View Full Version : I go something like this.....

Pages : 1 2 [3] 4 5

04-04-2008, 03:26 PM
Gentle hugsss Oluwa...

My last time I had with my mother...she wanted me to help her pick out some trees and shrubs and plant them in her yard. It was to be her last weekend on this earth.

She laughed so hard when my sister and I were trying to plant a snow ball tree. I was trying to break the ground with a shovel...it didn't go well...I became airborn and landed in a newly planted juniper bush. ouch.

But we laughed ourselfs to tears. I still have a deep fondness for snowball trees. I hope the one we planeted for her is growning big and strong.

My father sold the house, and he lived in his car for 2 yrs before we convinced him to come from the cold. He did not cope well with life after my mother passed. He never really found himself again.

I have a sister who I do not see as often I as I would like but we are in each other's hearts and two brothers. One who always looks past what is for something he thinks he wants. And the other who runs from the past and from those who love him. I have no older relatives to turn to for advice so I try to find council in how my mother delt with things.

To me she is the wisest person I have ever had the pleasure of knowing. She had a gentle heart and determined spirit.

04-04-2008, 06:05 PM
Oh my, oh my...I've missed so much! So many of you going through so much pain - I'm so sorry I've been away and not here to support you! I've had a bit of a rough patch myself, and then so did my computer. I'm using hubby's computer tonight as he is off playing basketball. I don't know when I'll have mine back, so I've been missing a lot.

Oluwa...reading your posts made me cry....I could actually feel your despair. What a dark and sad path you've had to follow lately. You were right to be angry - IT has no sense of fair play, and neither do any of IT's cousins (fibromyalgia included!) As the posts got more recent, I was so relieved to read that YOU found some relief. I know you have more mysteries to solve, but controlling the pain will make the journey a bit easier, eh? You have the love of your whole family here - but you know that, don't you?

Saysusie, I'm so glad you got a referral to the FM clinic...that's great news! I also have FM (...a familiar refrain, eh?) and have been struggling with increased pain and many, many sleepless nights. My doctor put me back on pain meds (I haven't been taking any in a long while) because the lack of sleep has been aggravating all of the other symptoms. I hope this clinic will have the right answers for you, Saysusie.

SITC, you've been having a hard time, too! Many hugs to you - how are you doing now?

Karen, how is Nadia? I've read all of the posts in this thread, but haven't gotten any further. Know that I keep your family in my prayers.

Cheryl, I'm glad they have your BP under control. High BP is very dangerous (I'm sure I don't need to tell you that!) and it can be so hard to keep in regulated. Both of my parents had problems with their blood pressure. I - knock on wood - don't. Hope you feel better with the new meds.

For those of you who've lost your Mum...I feel your pain. My mom died a year ago this past Valentine's Day. She died of Alzheimer's disease. She was slipping away from us for such a long time, but she loved us even so - right to the end. I miss her so much - I know just what you mean. I have to look back a few years to remember my Mom as she was before the Alzheimer's took over - but I can still hear her voice in my head; her sweet laugh and her gentle touch. We're always our mother's baby, aren't we?

04-04-2008, 08:00 PM

There you are...yes, my depair has dissipated. But you, how are you! Tell me about your rough patch...has it mended? Pain does drain the life out of you...it did me,I turned gray and blue..till I found relief in the new pills.

Have you found relief in your new prescription? I hope so. I feel so much better now that I am sleeping. I decided I am no longer going to try and buck up.

Sometimes I don't know what or how much I suppose to tolerate anymore? I know we choke down more than we should...I am glad you are back on your meds, to eliminate or ease up the pain...

Seems everyone seemed to take a nose dive at the same time...change of seasons perhaps.... we are all wounded... rolling on the floor. The teasing of Spring, the cold, some places snow maybe the cause. Up and down of temperature. I know in the UP they just had 5 inches...crazy.

I think Spring will continue here and our frosty nights are done with...by day, one day 80 the next 40..

You've missed alot, and I missed you.

04-05-2008, 01:03 AM
hugsssss Jody

Was getting worried about you! Bad, BAD computer. How are you feeling?

What I'm going through is quite average for me. No biggy. Especially compaired to the levels of pain and exhaustion I hear you all talking about.

And chance hubby will share his compter? :lol:

04-05-2008, 09:54 AM
Thanks SITC, for asking - I am doing better. In fact, rheumy said some of my symptoms are improved enough, I can start to taper down on prednisone again. I'm not on a big dose (just 10mg) but just dropped it down now to 7.5 mg. We'll see how that goes. Still on cellecept, colchicine, plaquenil, flexeril and now pain meds again. Looks like I have another neuropathy - or the old one has spread to my feet. Numbness, pain - back to neurologist I guess and probably back on neurontin. Sigh...just when I think I can put less in my pill sorter, I have to add something. Sheesh... BUT, in spite of all of that, I do feel better in many ways. I'm hopeful. Now, if my computer can just right itself....Yes, hubby is 'sharing' for now. We've promised ourselves a new laptop for Christmas next time, and then we'll both be happy.

Oluwa, I'm so pleased to hear that the despair has lessened. Change of seasons can be so rough on us, can't it? I don't know how much we're expected to tolerate - but the saying goes that God doesn't give us more than we can handle. Is that true, I wonder, sometimes. I read of the courage and heroic effort so many of you here put into just managing your disease - it humbles me and makes me appreciate how well I really am.

Glad to be back among my friends!


04-05-2008, 11:28 AM
I missed one day and missed a lot of conversation here. Sowwy :-(
Yesterday was a bad day for me so I just stayed in bed with ice packs and heating pads and drugs :? I quit trying to decide which pain was Lupus and which was FM...All I know is that it hurts constantly and the burning of my muscles is the most annoying part, and I can't move..uggh!! I hate to complain about my pain because I know that I am on the low-end of suffering. But, it does get to me sometimes.

JODY: so glad you are back and that you are feeling better - well enough to start tapering your Prednisone. I know you are happy about that! I, too, hope that the clinic will start to give me some favorable results. I am grateful for the relief that I've gotten so far!

Oluwa (sweet angel); I am so happy to hear that you are getting some sleep. OMG, I know what that feels like!! My new medications and therapy have not quite made a real difference EXCEPT in my ability to finally sleep ALL NIGHT! It's amazing how just being able to do that makes such a big difference.
Do make an effort to see "Over The Hedge", it will brighten you day, make you laugh and forget your ill for at least a couple of hours. It is a very sweet and funny movie.

The pressure points, for me, are hurting all of the time. We just are not able to differentiate the pain because everything is so painful!! It's just when the rheumy puts pressure on those very sensitive areas, it's like a pain that you wouldn't wish on your worst enemy!!! Owwwwwww!!!!

Love To All Of You
Peace and Blessings

04-05-2008, 12:04 PM
:( I figured you must be feeling crumby yesterday saysusie.

And pain is pain. Doesn't matter what end of the scale you're at. Can you all remember what a completely pain free day is like? I've been hurting straight for almost 2 yrs now. I've had days that were heart breakingly painful and other days that are just an annoyance.

But wow it would be great to have a pain free day (with no nasty boomerang you did too much days following it)

Gentle hugs and prayes for a pain free day

04-06-2008, 01:14 AM
Hi Oluwa,
I am glad to hear you are feeling better. I cried when I read your posts and was very worried about you. You had mentioned "I know I read about sleep disturbance caused by Fibro..brain waves and etc..anyone know of this? I am sure I have it bookmarked somewhere. " It was in Dr. Daniel Wallace's book Fibromyalgia for friends and family.

I hope you are planting flowers today and feeling much better. It is good to hear from you again. Oh my gosh, I missed one day, and missed so much. So, I take it you have Fibro? Interestingly enough, somewhere in that book it mentioned that many have had back surgeries when the problem is fibromyalgia. Could this have been the case with you? I think I had mentioned that before; though not sure.

Well, glad to hear you are doing better!!!!! I am sorry you have joined the Fibro fun!!! It acts up separately and all at once, if I am sick, I get the fibro and joint pains. I am telling you, if my husband had to deal with Lupus and Fibro . . . . . he would be grouchy (sp?) too. I think we are strong for a reason, God knows we can handle it. Okay, well my neck and back are telling me it's time to say nite nite.

Take care,


04-06-2008, 04:02 PM
I’m a bit miffed, okay a whole bunch. This is so insane or am I....

Briefly..Okay, Saturday my telly rings. It was the rheumatologist from the university. She says, I have no indication of an autoimmune disease, or connective tissue disease and that I am in perfect health. And she will inform my PP of this and recommend to discontinue treatment.

How can that be? I have been treated for SLE for two years, I said. Steroids, Plaquenil, NSAIDS, pain pills. I had two positive ANA test prior. She said, “it was irrelevant and her diagnose is I do not have an any type of autoimmune disease.”

Maybe it is remission? She said, “ there is no such thing and if so, I would have a positive ANA.” I said , that is not true from my reads.

I mention about the negative Lupus 5%..she thought she corrected me, “ it was only 1%.” I said, the test is only a tool, not to diagnose with. With my current symptoms I could still be classified as incomplete Lupus. I did the spiel about the diseases is accumulate and the symptoms I had yesterday may not be here today or I may have more or less. She reiterate, “ I am not going to label you and I will inform your PP to discontinue treatment.”

What….. ^&*%$##%^*(((**-))!!P))@$%&(!#@! I was flabbergasted, angry and I still am. I just picture and felt the merry-go-around, spinning. Deja Vue. No way. No medicine, with my joint pain and facial rash….no way.

I said.. that is crazy, not that I want Lupus. What about the years of nose ulcers, the rash on my cheeks and nose that I have. Her reply…“You need to see your dermatologist.” My arthritis? Joint pain? Depilating pain. Unable to hold a toothbrush or open a door. “I’ve seen more case with joint and muscle pain because of the lack of sleep.” I angrily uttered, Lack of sleep for years??? I know my body it has been with me for 46 years and I know I have something. Not that I want anything and I know I am not dreaming She said, “well you do not have Lupus nor any type of connective tissue disease.” Not even FMS, I ask? “Well, maybe,” she said. And you don't treat FMS? No.

She told me, “I’ve seen more cases like this that resolves after sorting out sleeping issues. “ Huh, because the lack of sleep is why I am sick? That is insane? She said, “ Come and do the sleep study as schedule.”

I said, Frankly, I think you lab is wrong and I think you should attend a class on having manners when talking with patients. She said, “that is your opinion and do you have any further questions?” So, you don’t think I need to be monitor. “No, why should you be.” I was so irritated at her …for being stone cold. For being ignorant. I just said, “you have more studying to do. Thank you. Bye.” and put the phone down.

When I told my husband of this conversation, he was more livid than I. He kept saying, there is something wrong with their lab. Don't worry. Reminding me, they lost your labs from your doctors, and how incompetent they are just by that and the way she spoke to me. That says a lot. He wants me to schedule an appointment with my PP, so he and I can discuss her lack of diagnose since his lab gave a positive ANA.

My worry is I am going to get stuck on the diagnose merry-go-round again?

Will my doctor look past her diagnose and continue with my prescription therapy? I am a bit scared. Ifs, ifs, ifs. What if I get sick again like I did last year, no medicine...

Am I in remission? If so, why do I ache? Why the malar rash? I can't even believe that a faint wave of doubt came to my thoughts..is it all in my mind, I asked of myself. I told my husband of that thought. I've seen you, I know you. It isn't all in your mind, he said. There is something wrong with them, he kept saying.

I am so upset. Every time I think about it. I cringe….and I can hear her saying, “You need to see your dermatologist.” Like the Christmas Story..You'll shoot your eye out... I don’t know why that sentence sticks in my head….g-r-r-r-r-r_r I am just sick about the whole thing.

Do I have something else? It would be wonderful if I don't have IT. Gosh a burden would be lifted off of my spirit, if it was so....I am lost. I am confused.

Now what's a girl to do?

04-06-2008, 04:09 PM
Hugssss Oluwa...

Sounds like a time for a second opinion...please refer your self to my post in the lounger area...where I sing the ever growing in popularity...50 ways to leave your rhuemy.

Gawd, they really do seem to get a perverse pleasure in catching us off guard from out in left field.

See your personal physician and ask for a second opinion from some one who actually TREATS lupus.

Hugssss dolly dont let this freak you out.

P.S. get a copy of your records from stinky face.

04-06-2008, 07:16 PM
You poor thing, some docs need a crash course (repeatedly) in bed side manners. I'm so sorry you got one of these cold and emotionless docs. Its so heart breaking and emotionally drainig. I also used to have one of these docs as a PP, who also didn't like women. I know how you feel. I agree with SITC, get a second opinion and try not to let it get to you. Some docs just thank they know everything, therefor they are more superior than us. I am so thrilled that your hubby is in agreement with you. Good support is what you need now that miss heartless has unnessasarily(sp?) upseted you. Plant your flowers, if your up to it. Talk to your PP, be honest on how she made you feel and state you want a second opinion. Lots of hugs and support sent your way. Smile, don't let her win by letting it get to you. :D

04-06-2008, 07:33 PM
I just want to hit something! What an incredibly cold and heartless excuse for a physician. I want to wish very bad things for her, but I won't...maybe I won't.

Oluwa, Dearest Girl, don't let her get to you - and don't let her have the last word. Do you have lupus? Do you not have lupus? Maybe that's not the most important thing here. You KNOW (and hubby knows) that you've been very sick -- for a very long time now. SOMETHING is wrong, and it's not just 'lack of sleep.' Oh, I hope hope hope your PP will listen to you and understand.

What's really sad is that this doctor is probably delivering the same low-level care to others - sheesh. There's just no cure for stupid, is there?

More hugs comin' your way, Oluwa. I pray tomorrow will be a better day...


sick n tired
04-06-2008, 11:09 PM

Thank you for remembering my pain on April 4. I did remember you having to do with your mother. I planned on telling you just that. I am afraid that I was really bummed that day and did not get online. It might be better this year if my daughter weren't ill with God-knows-what....grrrr....

As far as back burner of the brain with my health. I have been having some problems that I am not able to ignore. I have not choice. I plan on calling my rheumy tomorrow. Oh, no as it is 1 oclock am, I guess I will be calling him today.

At any rate, thankyou. No one else did (in my life here) It can be so lonely.

In Him,


sick n tired
04-06-2008, 11:23 PM
I have been off for a few days...That is soooooooooooooo awful. You need to get away from that lunatic Doctor. What an idiot. I would be really upset if that is what my rheumy said.

I am so sick and tired of idiot doctors. They make a diagnosis and then try to make it fit. That is like a policeman trying to convict someone based on a hunch and never looking elsewhere when the evidence isn't there to convict.

I will pray that you are not on that merry go round.


04-07-2008, 06:55 AM
Thank you everyone for your support, hugs, concern... I haven't been much of a supporter to you guys lately...sigh. In prayer I have. Again...thank you very much. Head hugs...

I went to see Stinky Face, as SITC says...laughing out loud. I went to her, not to seek a diagnose but to find a different Rheumatologist to monitor my disease. My former or will probably be my same now, Rheumatologist seemed a bit aloof. Listened, nodded, said yes, no...and did a few errors regarding my Protonix, times he gave me the glazed stare... that is why I was looking elsewhere. Perhaps I have to return back to him. Maybe he is as good as it gets here...

He, the former Rheumatologist never knew I left, I'd guess. I just stopped going 6 months ago...Prior to the appointment at the MUSC with Stink Face I did ask for a copy of my medical records. Nothing was asked why, nor did I volunteer any info. So, maybe I will make an appointment like nothing change with him again.

Can't you have a negative ANA if in remission? Not that I believe I am in one. Has any of you had experience with that? My face is rashed out, I always have some reminisce of it... my pain has greatly diminished with the new prescription my PP prescribed. My fingers and wrist and back still ache a bit. Maybe IT took a back seat and FMS, if I have it is acting up, out....

Who treats FMS..isn't it Rheumatologist? A PP? Who should I make an appointment with then? My head hurts thinking about this...

How did my previous post get edited 22 times....weird...Twilight Zone..

Oluwa :shock:

sick n tired
04-07-2008, 10:06 AM

My rheumy treats my fibro. I think that "stink face" is full of prunes if you ask me. As my grandmother would say, "she don't know whether she is scratching her watch or winding her A**)

Also, it is my understanding that the ana can be normal in remission. (maybe you are in remission, the problems you are having are firbomyalgia) I have heard that even in flares it fluctuates. Are there no other rheumy's in your area? Maybe you need to travel to another neighboring city.



BTW what about the kidney problems you were having? I thought that was a sure thing in diagnosing lupus.

04-07-2008, 12:30 PM
Karen, Thank you for thinking of me, my Mum Friday. Is that your new grandbaby? Oh, so cute....

I know that type of anger Jody, with mine I feel like chewing nails..g-r-r-r-r..

Cheryl...indeed manners she lack and just think she is just starting out I believe. She is a MD, but a fellowee at the University here. So to be so ill mannered and abrupt, gosh that's too early...

Susan...she was forwarding a copy onto my PP, so that takes me one step away from the snare. The doctor's stink eye. :shock:

I did start to watch Over the Hedge it was on HBO or one of those movie channel. It was cute, but I think I fell out after the first half hour. I remember bits and pieces. Maybe when I stirred I would catch a glimpse. I imagined that is what the animals here thought when our development was being built. I am on the edge of the wetlands...

I started to take a second look at my symptoms list over the years, months and it could be quite possible I have FMS too but I know I have IT regardless. It never occurred to me that I may have FMS...

I think I have a year of refills for Plaquenil prescription of file with my mail pharmacy so I think I will just hold tight till next month, or is that too crazy? All my prescription have like 3-5 refills except Loratab. Authorization for that one only...

I feel so indecisive with these new pills floating around in me. Airhead..who has a pin?

Ah what to do, what to do....I feel like I took 10 steps backwards...

Happy Mundane...

04-07-2008, 02:54 PM
OooOoo sick n tired

What a gorgous grand baby....you lucky grandma.

04-07-2008, 03:09 PM
"she don't know whether she is scratching her watch or winding her A**

I LIKE it! New saying...cant waite to try it out at work! :lol:

Head hugs Oluwa...poor kitten. Guess I'm not the only one with a stinky face in my life.

Sick N Tired, may I borrow your nic for a while? :(

I'm Flaring bad. My face has busted out...my legs are swollen my eyes are puffed right out. All my joints are screaming at me. My head is pounding. And oh my poor jaw is sooooooo sore. I feel like I have the mumps but I've already had them six ways to Sunday. Things are quiet at work so I think I'll take tomorrow off and hide in my bed.

And I'm worried about my brother...he's not doing well. He's been going to the doctors for close to a year now complaining of being in pain and the only thing the say to him is lose 40 to 50 pounds. My heart is breaking for him.

He's got no one where he lives. All of his family and friends are here. So he's alone with his thoughts. He's having tests done all this week. I think he is being poked and prodded in all areas...poor guy. I truely hope they find what ever it is that's causing him this pain. I know he's scared and feel like there's nothing I can do for him. I wish he'd come home. But he wont.

I was reading a little article on the different types of lupus and it made all sound so easy to diagnose :shock:

Yah RIGHT! Everything they talked about I could tick all the boxes and yet!!!!!!! here I am sitting next to Oluwa going "What the hey?"

I could use some really fowl language right now that would get me band from this site....but I am too much of a *%#$@! lady :lilangel:

04-07-2008, 05:59 PM
Oh #$@!&*! Lady,

Let me hug you. I am sorry you are hurting so. Swollen..hey, try to elevate your feet. Or fill the tub with cold water and walk back and forth in it. Tread in it

Or under the tub faucet, alternate between very warm and cold water...

Are you taking any NSAIDs..I am finding out they swell me up...edema.

So what are us girls goes to do..you and I..hummm. I think my PP and my original doctors will stand by their diagnoses. Maybe I am in remission and I do have FMS and that is what is ailing me now. But the malar rash still lingers...

I hope you get a good nights sleep and tomorrow you will have deflated..

Head hug, Susan.

04-07-2008, 06:39 PM
Oluwa, interestingly there are several people in my local support group who haven't had a positive ANA, and are being treated for lupus. So, you sure can have lupus without a positive ANA. Still just burns me :evil: :mad: when I think about that arrogant so-and-so. Grrrrrrrrrrrrr

sick n tired
04-07-2008, 08:55 PM
Sick N Tired, may I borrow your nic for a while? :(


I would let you borrow my nic but I don't know what one is. :lol:
sorry sitc.

Sorry to hear that you are in pain once again...I really don't know what the docs are doing...it seems like they don't want to diagnose because they don't want to lable someone. There have been others like you Oluwa who change Rheumy's only to be told that the first one was wrong.

That sort of happened to me but in reverse. I had one telling me that it was all in my head and the next one telling me that there was something and after the tests he believed that I did indeed have lupus and fibromyalgia. Oluwa, I'll bet if I left then the next one would have a totally different diagnosis....perhaps some of them don't know what they are doing.

Oh sitc...my grandmother had another saying that might apply here, also. It was about the person in this case it is a stinky faced doctor not being able to tell her a**( she used that word only in these two sayings)from a hole in the ground " .....ooops I think that I have messed up my ladylike image.

Oluwa, I sincerely hope that you are feeling better...doesn't the cyclobenzaprine make you feel loopy? It sure does me, but I am not able to live without it. It at least takes some of the pain away. Stick to your guns. If your regular doc stands by his diagnosis go from there...


Blessings to you,


Oh that is my grandbaby...Thanks sitc for helping me shrink it enough to place it as an avatar.

04-07-2008, 10:31 PM
Sometimes i think doctors need to be taken down a notch... and i guess i dont see a problem in doing it! :D Sorry its the Greek/Jewish in me!

04-08-2008, 01:46 AM
The NSAIDs family of medications used to be good friends of mine. They were helpful and handy to have around.

There was one in particular that I used to aliviate my period cramps that my doctor said should help with the leg swelling. Well I tried it and things got really weired. all the fluid from my legs slupped like a big ol bagel around my ankles :shock:

I had a sudden urge to find a kiddy wading pool and try out my new water wings :shock:

My doctor and I have a good relationship...so when I waddled over to her office and showed her what happened.... :lol: she lost it. Put her head down on the desk and laughed.

When she regained control......she said she wanted me to try another NSAID drug. No good nor the next one nor the next one.

I think the last one I tried was celebrex...nothin

I'm usually very reactionary to medications. But since this started it's like my body resists what ever drug they throw at me. That's why I'm sad. It seems the arthrotec is now failing me.

I have a doctor's appointment lined up with my family doc for tomorrow morning. She's going away for 6 weeks so I want to make sure I have enough perscriptions to last me while she's gone. But I have a funny feeling that when she sees how swollen my legs are she's going to take me off the arthrotec and move to something new. New is not always a good thing.:( Resistance is futile :(

Oluwa....when I was going to physical therapy they had me laying on my back for 10 minutes (they really seemed to like the 10 minute time frame) with my legs elevated high enough that my legs were almost at a 70 degree angle. I can't say as I found that very helpful. Best thing I can do is put my compression socks on befor I get out of bed.

I'm sorry to sound like a defeatest....but I've done everything they told me to do...but it seems that when the swelling starts it's like trying to stop the tide from coming in. Oh I'll still alternate the ice and the heat and I'll wear my socks and do my physio..mostly cause it gives me something to do other than sit her swearing at my poofy legs :lol:

04-08-2008, 01:58 PM

How's the water flow on your legs....subsiding since this morning.

Maybe you need to take a diuretic to redirect the flow to your bladder instead of your legs.

Head hug,

04-08-2008, 02:06 PM

A few...I think many pegs. They forget the learn from patients.


No I don't feel loopy..actually for the first time in a long spell my whole body feels just relax. I no longer feel my hand resting on my thigh. It is just there...


I know, her arrogance chapped my scabby hinder. I am still a bit miffed about the whole thing too.

I left a message with my PP to have him call me, or his nurse...seems they aren't or they will call me late as it is after five...

Tata...enjoy the evening,

04-08-2008, 02:29 PM
Oh, I just got the call...

My test with my PP was the double strand test Anti-DNA (DS) Ab Qn , result was 144. Toss in my pain, joint, nose ulcers, hair loss, malar rash..oh, shoot I forgot to ask her about my protein in my urine level...

They hadn't received anything from stink face...said it is going to be interesting to see what she writes...I want a copy.

Oh, and my Gastro appointment is on the 17th..


04-08-2008, 02:38 PM
Thats why its called a "practice" :lol:

04-08-2008, 03:05 PM

Thank you for your thoughtful words. I cried while living it..shame on that doctor. Jessey has it right..it is a "practice"..

Hey, I found a link for the association with sleep and FMS...


Is this what the book was saying..

Enjoy this night,

04-08-2008, 03:09 PM
Hey Oluwa,

I truly think professors are out of practice and have been reading books for too long. I was denied Provigil by my insurance, I appealed to that state health insur board. Guess who reviewed my file?

Yes, a professor who wanted to know why I was getting flu and gammaglobulin shots. He stated there was no need for the provigil as I did not have shift work disorder, sleep apnea, or MS. It was denied. mmm, why was I in bed tired all the time? sleeping?

They get paid big bucks and are so out of touch with modern technology. It's really a joke!! They don't realize they are hurting patients by their diagnosis and the cold lack of concern.

Having Lupus, GERD are not fun, but then to add Fibro and Sjogrens. It's tough!! I think the Fibro kicks my butt more on a continually daily basis. I would not doubt for a minute that you have Fibro. I hope you find another rhuemy and fast. I am so sorry.

Take care,


04-08-2008, 03:12 PM
Hey Sitsc,

I hope you get a diagnosis fast. I am sorry you are in such pain. Hugs.

Take care,


04-08-2008, 03:23 PM

I also asked my doctor about Provigil and he said there is no way your insurance would approve it for Lupus. I checked...the same clause as you had written about nightshift and etc.

Maybe asked your rheumatologist to submit the request for sleep apneoa. Just a few numbers rearranged on the form. I read some Rheumatologist do that.

Someone here, in the forum said they were dosing with it..humm..shoot I forgot who. I know I could sure use a boost of the Red Bull in prescription form. Seems since last fall I have lost all energy..and if I do have it, it is fleeting. I don't get those burst anymore...just lugging this carcass along.

Maybe do a sleep study..and snore the sheets right off the bed...


04-08-2008, 04:40 PM
hmmm thats odd cause i was perscribed Provigil for my Lupus by a neurologist.... i wonder what random diagnosis he gave me LOL

sick n tired
04-08-2008, 08:48 PM

I am sorry that your mood is black. I have been there and there are no colors in the world.

Listen...You know that you have lupus...this is only one idiot who probably bought her med licence, or found it in a box of cracker-jacks.

I am sure in your state that there is at least one rheumy who knows whether they are fish or fowl.

04-08-2008, 08:59 PM
First, was the result 144 or 1:44?? That kinda makes a difference. Anyway, positive ANA tests are more prevalent than connective tissue diseases, and most of the abnormal results are falsely positive. At any rate, it is entirely possible to negative ANA Lupus. But, what is happening to you sounds almost exactly like what happened to me. My lupus was downgraded, but I was diagnosed with FMS and it is hellacious!!
COMPLAINTS OF CHRONICALLY LOW ENERGY, arthralgias, and myalgias are becoming more and more common in primary care settings. Doctors often investigate with a battery of laboratory tests, and if the antinuclear antibody (ANA) test is positive, then the doctor will usualy refer you to a rheumatologist with a presumptive diagnosis of lupus. But what is happening lately is that many of us are being told that we do not have Lupus or any inflammatory disease, and many of us are being diagnosed
with fibromyalgia. This can be a great deal of confusion, since many of the symptoms of fibromyalgia resemble the symptoms of lupus, and the use of the rheumatology lab tests can lead us to believe that we do have an autoimmune disorder. Doctors who understand the concept of
fibromyalgia, who perform thorough histories and physicals, and who interpret laboratory tests with caution are more likely to avoid these
diagnostic errors.
The new thinking now is that:
• Patients with chronic fatigue and widespread pain are more likely to have
fibromyalgia than any other rheumatic disease.
• Be prepared to diagnose fibromyalgia, while excluding autoimmune diseases by history, physical examination, and limited laboratory testing.
• Autoantibody testing is best reserved for patients whose pretest odds of an autoimmune disease are high

It is now thought that Fibromyalgia is much more common than Lupus. Most doctors have been taught to screen for “connective tissue diseases” with serum testing for ANAs, and then to clarify the diagnosis with additional autoantibody testing. In practice, however, this approach does not work as well as in theory. The reason: a positive ANA test by
immunofluorescence, usually defined as detectable staining at a dilution of at least 1:40, is too sensitive and not sufficiently specific to be used as a screening test. False-positive ANA tests are particularly likely to occur in the elderly. Most false-positive ANAs are of low titer, but even a high-titer ANA is not proof of an underlying connective tissue disease. Therefore, not surprisingly, ANA testing is frequently positive in patients with
fibromyalgia. Consequently, the ANA alone is not a reliable tool for discriminating noninflammatory conditions from autoimmune diseases. Most patients with low-titer positive ANAs have no other detectable autoantibodies, and additional autoantibody testing adds to the expense but rarely clarifies the diagnosis.
Here are Symptoms of ANA-positive rheumatic diseases
Oral ulcers
Malar rash
Raynaud phenomenon
Pleuritic chest pain
Joint pain and stiffness
Unexplained fever
Unexplained weight loss
Unexplained lymphadenopathy

Sjögren syndrome
Dry eyes
Dry mouth
Vaginal dryness
Parotid swelling
Accelerated dental caries or gingivitis

Insidious proximal muscle weakness

Scleroderma/CREST syndrome
Hand stiffness
Raynaud phenomenon
Digital infarcts

So, you see, positive ANA is not sufficient to diagnose. Laboratory testing can be used to confirm the impression formed during the history and
physical. Laboratory abnormalities that raise the suspicion for lupus are: Complete blood count
Leukopenia: usually lymphopenia,
occasionally neutropenia
Anemia: chronic disease, hemolytic
Serum chemistry
Elevated creatinine
Low albumin
Polyclonal hyperglobulinemia
Elevated creatine kinase
Microscopic hematuria
Red blood cell or hyaline casts

Completely normal laboratory tests are consistent with a diagnosis of fibromyalgia. Most patients with isolated chronic fatigue, diffuse pain, and a positive ANA test are ultimately found to have fibromyalgia. This is not
surprising, given the prevalence of fibromyalgia and the frequency of positive ANA results in people without autoimmune disease. :?
Did I help you or confuse you more??? Let me know :(

Peace and Blessings

sick n tired
04-08-2008, 09:10 PM
So Saysusie, they told you that you do not have lupus?

Oh well....Fibromyalgia is awful....

04-09-2008, 06:36 AM

How are you this morning? Oh, no my mood isn't black just confused. Pen, paper and no words but scribbles...

Enjoy this day,

04-09-2008, 07:10 AM
Oluwa, love your avatar. I swear thats how I feel, how can you put that down for doc on paper :lol: . Maybe then they'll understand? Nah, to easy :P .

04-09-2008, 07:32 AM
Hi Saysusie,

Feeling better today, I hope...Thank you for the wealth of info. Nope, not confused. I told the Rheuma..that test is just a tool. I do have a history and present of other symptoms. She was flat..

On the test. I don't know what the difference between an ANA and an Anti-DNA (DS) Ab Qn is. The second is the one my PP and Rheumatologist used. Results are whole numbers...no ratio, no titers. Just the 144

This is from the lab's site. I would have hooked you to a link, but it was a general link, so I copied and pasted. It reads...

* Negative: 0-99 units/mL
* Equivocal: 100-120 units/mL
* Positive: >120 units/mL

Specific assay for confirming the diagnosis of systemic lupus erythematosus (SLE)
Low antibody levels may be found in other connective tissue diseases.
Multiplex bead flow cytometry
Additional Information
Antibodies to DNA, either single- or double-stranded, are found primarily in systemic lupus erythematosus, and are important, but not necessary or sufficient for diagnosing that condition. Such antibodies are present in 80% to 90% of SLE cases. They are also present in smaller fractions of patients with other rheumatic disorders, and in chronic active hepatitis, infectious mononucleosis, and biliary cirrhosis.

In the past, it was considered unnecessary to test for anti-DNA in patients with a negative test for antinuclear antibodies. A group of “ANA-negative lupus” patients has been described with anti-ssDNA and anti-SS-A/Ro and anti-SS-B/La. However, HEp-2 substrate is much more sensitive than frozen section substrates, and it is uncommon for anti-SS-A/Ro to be negative with these newer substrates.

This standard dsDNA detects both low- and high-affinity antibodies, providing a very sensitive test for diagnostic purposes; however, it is less predictive for severe nephritis, which is associated with the presence of high-affinity antibodies.

Following levels of anti-DNA antibody may be of use in evaluating response to therapy, but should be regarded as a guide rather than a rigid dictator of treatment. Antibody levels correlate particularly well with activity of lupus nephritis.

Procainamide and hydralazine may induce anti-DNA antibodies and antihistone antibodies.

My symptoms from my history and today are:

Malar rash. Pink to red scaley. Doesn't itch and has never left for the last 18 months.

Nose Ulcer for years.

Hair loss, all over, not gob patches. It thinned out a lot, but grew back.

Blue feet, whilst I sit or stand. Cold? I don't know because I get the sweaties.. But now, they are blue and they do feel cold compared to my other body parts.

Pleurisy, three times DX


Joint pain and stiffness...Always to some degree. Debilitating to mild.

Extreme dry mouth, always enjoying sugar free gum or cough drops. Drink a lot of H20. I used a lubricant mouth spray too.

Very dry eyes, gritty, red, burning. I use drops daily

Vagina dry.

Rash on my stomach and hinder comes and goes.

Dysphagia. GERD.

Muscle weakness.

From extreme fatigue to just an exhaustive feeling.

And whole bunch of miscellaneous symptoms...like dry skin, UTI's, headaches...anxiety attacks..

Many of my symptoms can fit into any disease, but the malar rash..I know it isn't a dermatitis or an allergic reaction...

Well, that is me in a nut shell. And there he kept her very well.

It is probably IT with FMS, and SS...

Oh what a scambled mess.

Thank you again Saysusie..hugs.

Be well,

04-09-2008, 03:57 PM
I printed your post so that I could research all of the information. It may take me a while. Just wanted you to know that the lack of an immediate response from me doesn't mean that I'm ignoring your question. I'll get back to you as soon as I can.

Peace and Blessings

04-09-2008, 03:59 PM

What I am being told now is that my Lupus remains "Mild" in spite of an elevated ANA. The ANA now is indicative of my FMS and not necessarily that my Lupus is flaring!!
It's all much to convoluted for me sometimes. So, I just throw my hands up in the air and say "Whatever...just treat it!" :lol:

Peace and Blessings

04-09-2008, 04:00 PM

Worry not about my post...How are you doing? I hope you are feeling well considering FMS and IT...

And no rush Saysusie....it can wait. I'm not going anywhere...hugs.. Thank you very much.


04-09-2008, 04:38 PM

I agree with you 100% Pain is pain, a flare is a flare...just treat it :lol:

Half the time I think doctor's hold little meetings to see how they can mess us up and then set back ang giggle.

I know that's not true but sometimes they make ya wonder.

I went in to my doctor's this morning just to get a simple perscription filled and "drama". Other times I go in expecting the worse and it's oh well no big deal :shock:

04-10-2008, 12:11 AM
Hey Oluwa,

I would love to do the sleep study, but once you have appealed and it's been denied, you are unable to appeal again. Unfortunately, I don't snore! Bummer, my hubby snores the sheets off. lol. Maybe I could hide him under the bed in the study.

It sounds like you have Lupus and FMS. I totally feel for you. I was told that it takes years to calm it down if it does calm down. Whenever a storm is brewing or the bariatric pressure changes, I am feeling it!!

The best thing I did was purchase a Novafoam mattress from Costco (it's a generic Temperpedic) and it has helped with sleeping at night. Best investment ever and only $600.00. I hope you are feeling better today.

Take care,

Faith 8)

04-10-2008, 10:13 AM
Hi Faith,

How goes life? Happy Thursday...

Can you reapply under different circumstances like sleep apnoea? People change..symptoms change, though we always hope for the better.

I am schedule for a sleep study, but I plan on canceling it at the university. They left a bitter taste in my mouth. They believing I am sick because I haven't had sleep...good heavens. If that was all that was wrong with me, I would not have a thing to complain about.
Well, except that my husband travels.

We have a Serta Tempur-Pedic mattress, and that thing is so huge, King and thick... I need a step bench to get in and my husband grabs my arm to pull me in the rest of the way. It is a quilted Tempur-Pedic... and you know for me, it causes mores aches. I think that is because I've had 3 spine surgeries and I need a bit firmer bed...

When he is home I sleep on it, but when it is just I do the guest room

I am doing alright regarding the joints and muscles, my normal. Just a twinge of pain. But it is my spine, the whole back that creates such havoc lately. Five more days till my Neurosurgeon appointment...I pray a scaryroid shot will do it or that it isn't FMS. I couldn't handle another surgery..not yet. Not ever..

My life would be so easy without all this pain...so easy. When I retired early eight years ago, my plans were not to keep a journal of pain and become a recluse...

It seems like when one ailments is attended to another when rears. It's been a hard 6 months for me. My summer was great, considering but since September I've been floundering about...like a fish left on the beach.

I keep praying for a little more wellness, especially since my brother is due in 2 weeks for a vacation. I hate to be all drugged out. I don't wear it well. Like an inanimate object..just there.

Enoy the day, Faith,

04-10-2008, 03:16 PM

Gentle head hugsss. We bout a new pillow top mattress a year ago. Thought we had bought a really nice one too. But it was misserable. I'm not one to throw things out, but I was very happy to get rid of it.

I have my memory foam mattress now, and it supporsts me wonderfully. I have a memory foam pillow too, but I hate that. I haven't found a pillow yet that I like. I wish you could test sleep a mattress for at least 2 weeks so you can tell if you would be happy with it.

Most of us are in such pain that the bed is not a friend to us, and it should be. Now I dont want to get out of bed in the morning...I'm soooo snuggly comfy.

Keep looking for something that works for you, and your hubby :)

04-10-2008, 03:33 PM

How goes life today? Thank you for the hugss..hugging back.

My husband and are like Goldielocks. This one is too soft, this one is too hard, this one is just right...but we are not on the same right bed. He likes, soft. Since he travels all the time, he wanted the bed just exactly like they have at the Hilton. So, I went about my mission to get this huge king mattress set.

I researched, called the Hilton, I didn't get to speak with Paris... then made a call to Serta and they directed me to the retail one that was identical but under a different name "Gentle Heaven". Beautiful to look at...

I like the guest set, since it was mine prior to be married. Sealy Ultra Plush Firm...now that is my "Gentle Heaven"...

Here in the states some places let you take it for a spin for up to 30 days, others 14 days..most are 7 days. Department stores no more that 14, American Mattress is 30 days I believe.

I don't know if I would want to buy from one who has a 30 day test run. I could end up with one of those tester...a little Lysol, a new wrapper...and back on the retail floor...ewwwe..what nots...dead skin..

Have a good night, Susan...

04-10-2008, 03:38 PM
:lol: Oluwa...

I hear ya...and ewwww you're right. But when you think of the amount of money one of those costs, it should at least be worth it.

I'm doing pretty good today. I was pleasantly busy at work today, but not run off my feet.

And tomorrow is FRIDAY woohoo.

sick n tired
04-10-2008, 08:55 PM

That is what I think my rheumy was saying to me....I still have a liver problem that needs to be "watched" but he thinks the most pain is from fibromyalgia...I thought that fibro hurts on both sides the same...my right side is worse than the left...at least my arm and elbow does. Prednisone does make me better in the energy line, though.


How goes it? I know that the flexerell helps me but I get kind of loopy in the morning. At least the pain is better, some. Oh, the temperpedic mattresses makes me hurt all over...I hate those...I have a friend with bulging disks who swear by them..

Take care,

04-11-2008, 07:33 AM
Computer fixed..I'm back...!! Lots to catch up on, I see.

Oluwa, sounds like you're still in a lot of pain...I'm sooo sorry! Any better today? What others are saying seems right to me: doctors should recognize the symptoms, treat the symptoms and not get so hung up on diagnosis. Unless someone has every classic symptom of lupus, it's pretty hard to pin down. I have a friend who has been suffering with a ton of symptoms for years now and the most she can get out of her rheumatologist is 'possible pre-lupus'. What the heck is that?!? Isn't the treatment for some symptoms the same no matter what connective tissue disease (or other disease for that matter) causes those symptoms? Personally, I think insurance companies dictate a whole lot of what a doctor is and is not willing to do.

SITC, how are you doing today? Any improvements?
I have a memory foam pillow and I love it. I had a car accident ages ago that left me with disk damage and now significant arthritis in my neck. This is the first pillow I've ever had that helped alleviate some of that pain at night. I still don't sleep well ( :roll: ) but at least it's not from that!

Saysusie, I've wondered many times if I really have lupus - that maybe what is really the biggest problem is FMS. My rheumatologist doesn't run ANA tests anymore. I had that done initially, and it was very high. But she has said that it isn't definitive and really wouldn't change how she was treating me anyway - negative or positive. I was positively diagnosed for Sjogren's, but it's secondary Sjogren's so it's less likely to be the culprit causing the other symptoms. I lwas told that primary Sjogren's (that's when you have Sjogren's without other autoimmune diseases present) can cause a lot of the same symptoms as SLE.

I learn so much from this forum....you are all such smarties!


04-11-2008, 09:52 AM

And there you are. Buried knee deep in snow still. Here it feels like Summer is on its way...

And how are you feeling these days. Mending or enjoying?

Me? Yep, the pain has been gnawing at me. The back has surpassed all other pain now. FMS or from my herniated disk..unknown at this time. I see the neurologist on the 15th..and for the gut on the 17th. Thank goodness for Loratab and the other pills. I sleep so much better.

When I wake up, I am still stiff. I suspect that is from not rolling over..I freeze in one place. I used to sleep like that when I was, was well. Woke up in the same position, curled in a ball. But now I wake up stretched out on my side like when I fell asleep..

Life was sailing along last year till fall came about. Since then it seems like it is always something, something that I don't want. Too much junk in my baggage now...

Pre-Lupus, Incomplete Lupus...yea, what the hells is that? I think my IT took a back seat why the negative. I have yet to see the results. My PP nurse said she would give me a jingle when they received them.

What baffles me is basically she said I have nothing, no connective tissue disease..zilch, zip, nadda. If I do have FMS, I still believe I have IT. I will pursue answers after my brothers vacation. The medicine I have now seems to help a lot...so I can hold off.

Shoot I just thought my GYN never called be back this week to prescribe a progesterone for my lining, since I put of that surgery till May...and they close at noon today. Hummm. Time to find a new GYN.

Hard when your new in a place to seek out all new doctors.

I feel like Humpty Dumpty..trying to put myself back together. But I think I might be missing a piece of my shell when I am done...


sick n tired
04-11-2008, 10:25 AM
Hey Oluwa,

My ana goes up and down...I am not sure why...I might have said to the doctor that it was such a relief to hear that I am well...I wish my body would hear, too.

Fms and herniated disk would be awful...the pain must be unreal :(

Is there a pain management place in your area? Perhaps they could help. I have not been to one because I'm not sure that my lousy insurance will pay. We are snowed under with bills from Nadia, so I am not able to even go to the doc :( ....sigh...

At least it is not a dull life :) There is a bright side...I did ask God for more boring in my life, not sure I like the drama...the granddaughter was a bright spot, though.

So did you get some of the same winds and gusts that we did or did it peter out when it got to you? It feels like summer here, today. The sky was bright blue after all the storms. Very pretty and cheerful :)

Well, I do hope that you are feeling better. Does your husband come home, today? That will be a bright spot, too.

"see" you later,


04-11-2008, 11:09 AM
Hey Karen,

How goes life today? And how is Nadia? Has the mass shrunk? Any diagnose? That must feel so surreal to be going through that with your daughter...sometimes life for me is surreal. When I feel that way, it causes anxiety within and I fear my illness. I don't know what to call IT anymore..

I haven't research a pain management in this area. I did attend one in Seattle for my failed lumbar surgery. It sufficed then but what is in my upper and mid back is spirit breaking. I think much more than what mental imaging, breathing exercise and stretching can do. I tried so hard to do what I learned and all I could do was bring it down to a cold burning pain, that I felt right trough to my front.....and it exhausted my mind.

Help is on it's way...five more days to see the spine guy. Shoot I said that the last time, and no help was given at the MUSC. Just left me baffled....but I am thankful for my PP though.

Some hospital have charity funds that may assisted you. I know in Seattle, and Michigan they do. You have to fill out an application..check into it. They may pay the balance or part of it. Have you thought of St. Jude Children's Hospital..here's the link... http://www.stjude.org/stjude/v/index.jsp?vgnextoid=f2bfab46cb118010VgnVCM1000000e 2015acRCRD

Yes, my husband will land tonight. He finally scheduled an early flight, so in the event that one was canceled he could get aboard another. Then after this weekend he will be gone for 10 days. Returning just in time to share my visit with his brother-in-law.

I so look forward to my brother coming...we enjoy each others company very much. He is 5 years older than I.

Type at ya later...enjoy the weekend..

sick n tired
04-11-2008, 11:42 AM
Hey Oluwa,

Glad to hear that your hubby is coming home today. I hope that he is not using American Airlines, though. :lol:

Nadia is recouperating from the surgery and in the spirit of an 18 year old is beginning to feel invincible again.....Yes is is surreal...but all of this IT stuff is surreal. Last year at this time I felt bad, but IT was not even a suspicion. I just thought that I was in menopause and/or had thyroid problems. No It has come.

Like I said before, your doc was full of prunes...you have others who have diagnosed this as Lupus...and since there is no cure you can't have it and then it went away....if that was the case then you need to tell us how you were miraculously healed. The only thing is you should be feeling much better if you were healed.

I wonder if I looked hard enough in the cracker jacks boxes if I could get a brain surgeons licence. or is it only Rheumotologist licence that comes in the boxes.:lol:

Have a great weekend with your hubby,


04-11-2008, 11:44 AM
Oluwa, I think you already said, but where does your brother live? Is he traveling from far away? I hope he arrives safely and you have a memorable, warm-fuzzy, wish-you'd-never-leave kind of visit. I know you could use the good feelings, and sometimes the memories of those special times are enough to see us through the crud that might come later. My little sister, her two daughters and their two daughters came for a visit a week or two ago - there were some fun moments, but that was just a bit much for me. I had a rough week after that - hmmmm - could've been the company. :roll:

I wish your back was better...disk problems AND all of the other...that's just not fair. I like Karen's suggestion - a pain clinic. We have a very good one here, but that's a bit of a commute for you. :wink: Ask your PP if there's one in your area. They use such an interesting combination of things to help people deal with all kinds of pain.

I'm sending warm thoughts (and maybe a little crisp, cool snow, too) Can you feel it?


04-11-2008, 12:14 PM
Karen..I missed the post of Nadia's operation. Sorry, hugs. It can be bitter sweet, to find out and to have the surgery to keep one healthy? Was it cancer?

Yes, that MD at MUSC is full of crappolla...True about here today, gone tomorrow, must be in remission. Thank the Lord, it comes in one at a time. Sometimes I would like it all at once to get it done and over with..

Today I had to take two Loratab at once just to bring it to a manageable level. If, not I wouldn't be sitting and typing..

No, he isn't coming on American..Delta. Crazy what American Airlines did to those 540 flights and all those people....


My brother is coming in from Seattle. Making a pit stop in Florida to see our Father, and renting a vehicle so they can sideswipe Disney World and drive on up to see us. He'll flight out of Charleston...

We always have a great time. And I even reflect on those times from years ago, or even our last weeks telephone call. We laugh alot.

The place I am going to on the 15ht has a pain department, but I hadn't look into it. It is the Southeastern Spine Institute I have my appointment with. Suppose to be the best here...

My neurosurgeon who performed the surgery on my neck here..did a great job, atleast it seems to. I am not going to him for this pain, because well, so many times he was running behind and left me waiting for 90 minutes in the waiting room. Good surgeon but full of himself..

I haven't had an x-ray to see if it fused with the donor bone properly. I am sure it has. It clicks and gets stuck at times, and so does my lumbar. I'll have the SE Spine address that.

You didn't mentioned how was the weaning of steroids going? Still weaning..

Wooo..I would love a bit, for a small duration of snow. I miss it. In Seattle I would just drive to the mountains....

Thank you for the warm thought..thinking of you too..

Hugs to you two..

04-11-2008, 02:33 PM
Oluwa - You sound like you have a great sibling relationship. I have a big brother that I'm crazy about. We don't see each other often (and he lives just a few miles from here!) but we talk on the phone frequently and always enjoy it. I hope you have a wonderful time with Dad and Brother.

Tapering prednisone going OK....a little complaining from my body, but manageable. I'm trying to sleep as much as my body needs - but sometimes that's not working so well. I'm exercising at least a little every day. My body says NOOOOOO but I make it get up and move anyway! :lol: I know I'll have days that just won't work out that way, but every day I exercise is a little victory, I guess.

Oluwa, I wish I could wish away your pain for a while - at least while your brother visits anyway. Maybe the pain department at the Spine Institute will have some good ideas for you.

I'm sprinkling some snow your way - just a little, though. You really don't want what we had here today...Sheesh, who would know it was April to look outside?!


04-11-2008, 02:45 PM
What a cute avatar..I love her...

We are a pretty close knit family, all eight of us. Some tighter with another...me, I call everyone. Some a couple times a week, others a couple times a month.

Without their chats, I would simply go mad here.

I wish I had the motivation to constantly move a joint like you...I was scared straight after I was in pain for days after my last 15 minutes on the treadmill.

Thank you for your well wishes...I hope too. I think I will be alright, even with just Loratab. SE Spine doesn't believe in pain medication as I read. Initially, but not long term. Loratab was from my PP.

And I wish, pray that your body would stop complaining..don't they become such nags. I hurt, I need to sit down, feed me, feed me know, clean me, I need to lay down...and then IT begging for stress so it can thrive. Only if we could cash it in for a new one...

Enjoy the weekend,

04-11-2008, 03:39 PM
Okay you two...where are you getting the cute avitars from? An they are animated ...

Oluwa you must be getting very excited about your brother's visit. That's great that you enjoy each other's company.

04-11-2008, 03:43 PM
It'll cost ya if I tell ya. Whaddya got, man?


04-11-2008, 03:47 PM
I have a nude pic of Johny Depp
but I dont think he'd fit into an avitar pic :lilangel:

04-11-2008, 03:48 PM
HUmmm..nope..what else ya got?

04-11-2008, 03:50 PM
MmmMmm I've got toe nail fungus :) :shocked!:

04-11-2008, 03:54 PM
Humm...sounds tempting...oh, let me think on it...

Okay nope..what else, man...and where is my steak and wine?


04-11-2008, 04:07 PM
How do you like your steak? There's also salad and mushrooms in garlic.

and cake with raspberry sauce yummmm

04-11-2008, 04:14 PM
Medium rare..ribeye only. I know it is the fattest cut, most high calorie slab..but being a no red meat eater before and turning into a meat eater. I need it soft and tender. Over cooked..won't eat it.

And Yummy-oh...Raspberries my favorite...and chocolate?..Toe curl.


04-11-2008, 04:22 PM
SITC, for some reason I couldn't get the cute avatars to 'stick' until I got my computer fixed. Have no idea why. I'm not sure if I can post an avatar website...is that OK, Saysusie? I have only been using the sites that don't require a download - I'm a bit paranoid I guess!

Oluwa - don't you just love the little cheerleader? I've been trying to get her to load into the forum for quite a while...goofy computer wouldn't let me until today!

SITC, I see you are now a 'rabid pit bull'....my favorite of the animal names Admin gives us as we move up the ladder! :wink:


04-11-2008, 04:30 PM
hey Jody:)

I think that suits my current pick :lol:

Oluwa was kind enought to send me the link in exchange for my toe nail fungas :)

04-11-2008, 04:35 PM
I think you got the better of THAT deal. :!: :?

04-11-2008, 04:40 PM
SITC..Gee your avatar is so small or I need my reading glasses..what is it?

Looks like a pig, but when I squint it looks like a dog, with a cat on its back..or a baby with a chick-a-dee on its head..


Jody..maybe your virus protector was blocking it or you PC was set at not to except certain cookies...


04-11-2008, 04:49 PM

Some times...size does matter :D

It's a cat giving another cat a massage. I'll see if I can resize it.

04-11-2008, 04:54 PM
Stretch it with Windows Paint...change 100% to 200% both ways..Vertical and Horizonal..

Size does matter we just say it doesn't. I need to see it to enjoy it. So stretch it...girl


04-11-2008, 06:52 PM
Oh, it is two cats.. I had to squint to see the yellow towel on the cats head...laughing...


sick n tired
04-12-2008, 10:14 PM
Hey Oluwa,

I am sorry that I have not answered...I just got on...been a hard weekend and it is not over. :( Gerd is really bad...I think I may be bleeding, too.

As far as Nadia...she had a major surgery for the biopsy. The doc told her last Tuesday that it will take her at least 12 weeks to recoup. and that is because she is so young and otherwise healthy. Someone like me or hubby it could take upwards to 6 mo.
No they were not able to find lymphoma...the downside is that they do not know what it is and what has caused it. So we are forced to wait...*biting my nails* it is so hard...what we apparently are waiting is to see if it grows or shrinks. She is still painfully thin and not regaining her weight and has low grade fever...sigh... :roll:

I hope that the lortab helped when you took them and you were able to have a nice time with your hubby. I am glad that he is not flying American Airlines or you might not see him for a long while...you are right that was crazy what happened to all those passengers....I hope all that mess is over by the end of May for we are to take a trip and my hubby has already paid for the tickets with American.( he signed before all this mess started)

Have a great Sunday,


05-09-2008, 07:20 AM
Without you all it felt like....

It was like a thunderous day, the sky is clapping, the clouds are shedding rivers of rain... then the freakin' power goes out. Now what do I :shock: ..in the dark.

Missed you, and you and you too...

05-09-2008, 08:02 AM
I missed everyone so much. Never thought I could get so attached to people I never physically met. I was at a lost, now all is good again. :D

05-09-2008, 08:16 AM
My weeks went in brief like this...

I last left you with, my brother was on his way. He came and left.

He arrived with a gift, for me. Piglet from Winnie the Pooh, at Disney World. He went their for 2 days before pulling in at my home. I love Piglet. I even have his coloring book....

They ate, I nibbled...we grew, we drank.... we grew...dined in, dined out. From Shrimp and Grits, Fried Green Tomatoes BLT's, to Buttermilk Fried Chicken. At home we ate what I call clean. Grilled meats and salad with vinaigrettes and Red Eye Beers, Margaritas, Bloody Mary's....with Shrimp and Olives dangling from the glass.

Toured about.... the Charleston Aquarium, Drayton Hall Plantation...the state parks, swam in our pool...shopped and even found time to toil in the dirt. My brother has a great eye for filling garden beds. Planted Mondo grasses, Hostas, Vinca Majors and Minor..and Monkey grasses...and , and..oh I forgot.

IT was kinder to me. I petered out with early bed nights and one day I took a power nap. Four hours. My face flaired without eau de perfume once...I failed to cover my face with cream or shade it with a 36" brimmed hat. Broke out the putty and I was good to go. And a bit of extra help with Lortab.

My husband lands tonight, a two week stint again...he'll be home for a week. Then off to another city, onto a new project.

I made it to my appointment for the paunch. My brother was with me. Before I could utter a word before the procedure started, I was wakening up in the recovery room. They indeed stretch my esophagus out. No longer a pinhole in diameter...I can now swallow a bird whole now. Not. They did stretch it out though. It does feel better, so much better..not clogging up like a drain, He took three biopsies..and I wait for the results.

I also did the Nuclear Gastric Emptying test this past Wednesday. Indulged on scrambled eggs seasoned with a bit of radioactive material to see how my tummy operates. Scan, shopped for ninety minutes..came back and scanned the hopper again.....and I wait for those results too.

My follow-up appointment and the results with the Gastro is on the 28th, ...and one with my Rheumatologist that day too. Decided to give him a spin again. Spine is on the 22nd and I will get my bucks cleaned on the 14th. Month of May, my body tune-up month....

And so no one will feel bad if they miss my birthday it is May 13. I will be 47.

And how was your weeks...


05-09-2008, 08:27 AM
What a full agenda, Oluwa! Your time with your brother sounds lovely - so much good food, fellowship - and your body sounds like it cooperated for the most part. I'm so glad for you - I thought about you so often during this forced 'hiatus' we all had. I knew you were really looking foward to the visit and I was anxious to hear how it all went.

Wow - so many tests. You will know all there is to know about the old machine, huh? I have my fingers and toes crossed for good results - information that will help you manage things.

Me? Tummy troubles making me a little cranky - about 2 weeks worth of not-so-great stuff. I can't get into my PP until June 3rd - a person could get very hungry by then! It's hard to eat much. BUT, I'm now down to 5mg a day prednisone and hope to keep going down a bit every month or so. A bit more pain; a little more inflammation, but nothing I can't handle. I'm just glad to be reducing the nasty stuff. All in all, not doing too badly.

It's sooooo good to be back here! :D :D :D

05-09-2008, 08:57 AM
Jody, hey you..lovely to read you.

Hugs...What is going on with your tummy? Do you have what I got? The doctor gave me three pictures of the inside of my hopper and duodenum, small intestines on ream paper. It looks sore.

I went to a site that has images of the insides. It didn't look like the normal snaps. I tried to look for one like mine.... But there were so many to flip through....

Gastritis, with no hemmorrhaging, dilated my hole to 54F the paper said. Inflammation, eosinophilic espohagitis. Three biopsies taken. Resume Protonix and Wait for pathology report...is all I know I was in lalaland from the anesthesia and my brother must have got a dose of it, like second hand smoke, because he was unsure of what the doctor said. He would say, He said this..I think...

My food stays in my stomach too long...that is why I had the Gastric Nuke test. 8- 12 hours. While I slept last night, I woke up at about 3am and threw up my 6 o'clock half of olive oil and tomato sandwich. That happened a few nights back too.

It is easier just to drink high protein drinks. Have you tried those? I also picked up some Red Bull, for the B's...I kind of like it.

So, every time you wean a bit off the steroid, you get sicker, but then does it level off to your norm, then do they decrease the dose a bit more...again?

I pray and hop you will not be doing badly at all!


05-09-2008, 09:03 AM
Hey Cheryl...we don't have to be lost anymore...

Here is my email address and to anyone who wants to keep it...except those spammers! MarijoHelen@aol.com.

You, everyone has become apart of me too, my day...happy or sad. You and everyone has been there for me.

I can't wait till everyone piles in the forums...

I wrote this to Saysusie...

When you have conversation anytime, any day , any night through your finger tips...the ease of friendships, you enjoy that everyday...and when it is gone a hole is felt. Like something is just not right. I feel that something just isn't right.

Even though I don't hear each ones' voice, I created a voice, a personality, a face of each from their written expression, their avatar..and I hear and see that creation in my head as I read each post. A place in my mind now feels empty. I miss you, them, everyone.

I do, I did, I will...Love Oluwa

05-09-2008, 09:49 AM
I didn't have Saysusie's email in my contacts - I DO NOW!! And, I added you, too, Oluwa.

You said it so well...WHL is a lifeline; a connection; a community...even if we never meet or 'speak.' It's a new-world phenomenon, but that doesn't make it any less real. I had a great sense of loss...loneliness. I was afraid it was not coming back (until I found Conrad's blog and saw the explanation!) Now...it's like the sun is shining again!

Prednisone? Don't know if I'll be able to wean off entirely...it's a 'crap shoot' every time. I hope, I hope, I hope.....


05-09-2008, 10:12 AM
I just wrote a post and lost it after 45 min. to write it due to my new day-care kid who started today. :x . Here goes again.
Planted the flowers and wrote a dedication on the border for my sister and her family. Had a good cleansing cry and felt better.
Got a new rhuemy app. on july 14th, will get results sent to my doc 4-6 weeks after it.
Hubby did take us to the beach, we all had a blast. He promised to go every other weekend.
Got a new kid today who's 4, was warned he throws tempertantrums. NO KIDDING, WOW :shock: . He snuck into his candy I had hid and told him he'll get after lunch. Boldly came up eatting it and said he wanted it and he got it (how, I'm not sure?) Took it away and told him I said no, then waited for this fit. He started screaming so loud, so I ignored him and went about my usual cleaning. He kept comming to my ear when I bent down and started screaming even louder. So I went and turned the radio up and still ignored his, appperantly he does not like being idnored. He shoved my couch around the living room, threw my foot stool several times, threw pillows and toys. Broke down and called the parents. One talked on the phone and the other popped in, he's been better since. They pleaded to give him another try, I reluctantly agreed. I am so lucky that my 22 mth old wasn't even bothered by him. She looked at him like he was nuts and went back to dancing and playing. Really lucky me :o .
Oluwa, I'm glad to here the procedure helped. Wow, that is alot of tune ups. Glad your doing it though.
How's it been for everyone else?

05-09-2008, 12:13 PM
I'm glad that you posted part of the email that you wrote to me and I truly apologize for not responding to it. Had another computer malfunction and my son-in-law had to come all the way from Las Vegas to fix it :( Anyway, by then, WHL was up and running. So, please don't think that I was ignoring you, I would never do that. Just so frustrated with computer problems..arrrghh
So, happy birthday angel! You are just a tot compared to me (lol). My son will be 37 on May 15th and he wants to go to Disneyland...so we are going, just the two of us!
My mother had her esophagus stretched also, she says it was a Godsend! I hope that it works for you. She was told that she might have to have it re-stretched in a couple of years. Did they say the same to you?
You and I discussed the "slow emptying" syndrome that we both suffer from (or was that in the e-mail that I lost when my computer froze the first time?). Anyway......I do hope that you are able to find relief 'cuz I know how that feels!

Oh my, do we all suffer from tummy troubles? I'm glad that you are able to start reducing your Prednisone. I hope that the inflammation and pain do not cause you to have to increase the dosage again. But, even if you do, perhaps it will only be for a short time, until the symptoms are under control.

Guuurrrrll ..... you are my hero! I think me and the 4yr old would have had to have a very serious "come to mama" talk and understanding. The furniture moving and pillow throwing would have had some serious consequences from me. Perhaps that is why I am not in the Day-Care business.....I'd probably be in jail! I truly admire your patience, patience that your sweet daughter has obviously gotten from you :wink: I hope he behaves better for you from now on!!

Peace and Blessings

05-09-2008, 12:36 PM

No, I didn't feel ignored, nor did I think it...so worry not another moment about it.

From your snaps, you look like a teenager.

My brother did mention to me that the doctor said I may have to have it done yearly. I like the word I may, not that I have to.

I was trying to research what 54F means. I did find the ghastly tools they use to dilate it. Who knew.... From my reads I guess 60F is the maximum stretch they do.

Like a panty hose they don't want to stretch it too far, ya might get a hole or a run. Would they patch it with clear nail polish...

Yep we chatted up about it, burp..pardon me...

I've never been to Disneyland or World. Sea World, yes though.

Thank you for the birthday wish. Enjoy the day with your son..37, who knew you would have a child that old by your photos. Take a snap with Piglet....


05-09-2008, 05:57 PM
Hi Everyone,

Wow!!! I felt like WHL had been blown away; similar to Dorothy in Wizard of Oz. I checked and checked; worried about everyone. Wondering how everyone was doing? I am glad WHL is back online as is everyone else.

We really do become attached to those we not only support, but support us at the same time. I felt like there was a lifeline that was lost with everyone; swimming in the ocean waiting for the Coastguard to find us. lol.

Jody, I hope you can really taper off of the cortisone. I am praying for you girl. I have known one person who quit cold turkey; she was able to do it with Fetonal (sp) patches and will never go back to cortisone again due to the problems it caused long term.

Cheryl, you have more patience than a saint. My blood pressure would have gone sky high, and I would called the parents to come pick up their child. Whew!!

Oluwa, I am glad to hear you had your stretch and it is working for you. I am glad to hear you had a great time with your brother. I have been worried about you without knowing how you were doing. Not to scare anyone but, a friend's husband who had GERD, then developed Barrett's disease, and now has been diagnosed with esophageal cancer. He has given up; it's very sad. My friend was told by the Doc that with GERD, we should be scoped once every year since Barrett's disease develops from GERD which can lead to esophageal cancer if it is not controlled at the stage of Barrett's disease.

In researching my labs, I ironically came across the reason for tiny bubbles and immediately thought of you Oluwa. Like you really want to see another doctor; but call your primarly and ask for a Basic Matabolic Panel and also a kidney function test blood workup asap. Bubbles are associated with kidneys. I wish I had your email address or I would have emailed you. I now have it in my address book.

Missed you all.

Take care,

Faith 8)

sick n tired
05-09-2008, 07:54 PM
Hi Everyone,

Boy I sure missed you all. Oluwa I agree that it feels like the lights going out and not coming back on. (In our part of Texas that has been happening alot lately)

It is nice to hear from you all. I didn't have anyone but Susique's email. I found Saysusies, though.

Jody and Cheryl and Saysusie great to "hear" your voices....

I have been put on Dhea...I wonder if I will grow a beard now.

Well I am on a trip and just wanted to check in.

In Him,


05-09-2008, 08:07 PM
Karen...There you are...enjoy your trip. Road or plane? State?

We had a storm pass over this morning. I was sleeping like a baby, then my dog started to bark at the ceiling as the storm was overhead at about 6:30 - 7:00. Been have some pretty great z-z-z-z-z-z...

Power was out for and hour.

How's Nadia...?

Oh don't say a beard...electric or razor...


05-10-2008, 08:01 AM
Hi Karen,

Glad to hear from you. We missed you too.

I take DHEA; dont' have a beard as of yet. lol.

I hope your road trip is fun and you get to relax some. How is Nadia doing? Keeping you in my thoughts and prayers.

God Bless,


05-10-2008, 08:08 AM
Hugssssss Karen

Hope you have a great time on your trip!

05-10-2008, 12:26 PM
I'm happy to log on today to find that I'm not crazy. I'd been checking the site for the past few days from my laptop and kept getting some type of error messages. Then, I log on now onto my pc and the site pops up. I thought for a second maybe I was going crazy. Whew! It's good to find out the site was down. I felt a bit lost as well with it down. Good to see everyone and I hope everything is as well as can be expected for everyone.

05-10-2008, 02:33 PM
Hi WantItGone,

It's nice to see you online. I think we were all very worried about WHL. How are you doing? I hope you are getting some vacation from IT.

Take care,

Faith 8)

05-10-2008, 02:39 PM
Here I sit. I am a 26 year old mother of three. I just received the best and worst news of my life within 12 hours. I am pregnant! I will be greeting baby #4 in January. Now, on to the rheumatologist. LUPUS...what the heck is Lupus? All I know is the large words he used and the diagnosis didn't sound too optomistic.

What can I do? Where do I turn? No one I know or have I ever talked to has ever said anything about lupus or the symptoms I am experiencing.

I am scared I won't be able to raise my children. I am more scared I won't be able to have my baby. How do I do this? I would appreciate any advice or encouragement anyone can give.

I have a faith in God and since my diagnosis, I have questioned why me? What could God want me to do with this? I don't know how to cope or where to turn. The aches and struggles to do simple things are almost enough to send me packing. How do I explain my pain to small children? (My oldest is four and a half)

Please help!

05-10-2008, 03:18 PM
:B-fly: welcome GBabyMomma

Take a deep breath and let it out slow. You're goint to be alright. My sister found out when she was your age that she had lupus. She has had two beautiful baby boys and has raised them just fine.

Course the little stinker went in to remission as well but never mind that. Point is .... it's not all gloom and doom. Yes there are some very serious issues that go with this. But that's not to say you will face most of them.

This is a great site. It's warm and friendly and supportive. You can ask any question you want. Not all of us will have an answer for you but some one will :)

Lupus is an autoimmune disorder. There are several types of lupus. But basically your immune system turns on you. Works against you. There are ways of keeping your immune system quiet and for the most part under control. Proper rest, diet and exercise. Dealing with stress is very important as well.

Your rhuemy should be able to help you through the pregnancy. There are ways. It is quiet possible to have a happy healthy child. As proof look at the three you already have :)

Again, welcome to the board :) I'm glad you found us.

05-10-2008, 04:55 PM
Hi, GBabyMomma. I'm so glad you found us. This is the place to come for support, for empathy, and for some pretty good advice. There are people here who will have walked the same walk that you are now on. Everyone has a slightly different tale to tell, but someone will know just what you're talking about!

You've probably had this disease for a while...it usually goes undiagnosed for some time before some clever doctor notices a pattern. So, if you have 3 kids and the oldest is four and a half, you have probably already had children while your body was dealing with lupus. You will probably have this one just fine, too.

It's frightening, it's not easy, and sometimes it feels pretty lonely. But, lupus is not a fatal illness for most people....there are people on this forum that have had lupus for a very long time, and live very full lives.

You can learn a lot from the Lupus Foundation site www.lupus.org. Lots about the illness, diagnosis, living with lupus, resources.

Find a good rheumatologist or lupus specialist; get lots of rest (that's going to be tricky for you, with 3 little ones...hopefully, family can help); learn to manage your stress; eat healthy and stay out of the sun.

And, stop here whenever you need to reach out to others who really, really know what you're going through. Someone will ALWAYS answer you. Just the way it is around here!

Welcome to the 'family.'


05-10-2008, 07:01 PM
Hi WantItGone,

It's nice to see you online. I think we were all very worried about WHL. How are you doing? I hope you are getting some vacation from IT.

Take care,

Faith 8)

Hey Faith!!! (Waving),

I'm doing well. My darned body is inflammed. But, besides that & the usual aches, I'm cool. I am definitely counting m blessings. It's good to hear from you! I hope everything is cool your way.

05-10-2008, 07:11 PM
Thanks everyone for your great encouragement and advice. I am grateful for all the advice I have been given and all the encouragement that I can read and read again so that when I am feeling down I don't have to feel alone.

Where is the balance? I tend to be an extremist so it is proving difficult to find when to slow down and relax or when I need to push through the pain. Does anyone have any pointers for finding the balance with little kids?

Thanks so much again for all your encouragement and advice. I am so glad to know that even when I feel alone, I'm not alone!

05-10-2008, 08:26 PM
Welcome GBabyMomma, very glad you found this sight. I have FMS with a lot of the same problems as lupus. I made it through my last pregnancy, joint and muscle pain and all, fine. She did come a little early was the only thing. I have 3 kids too, so with 2 at the time it was a bit hard. Think of it this way: if they didn't give you a dx yet you would be going threw it just fine with no worries. You just got lucky to have a heads up to know to take better care of you and that baby, thats all. God never gives us more than he can handle, and that's so true. Apparently he sees you as a strong person, as I know you are to already have 3 young ones so close together. That takes patience and strength, so see: you have all it takes :D . Keep us posted on how its going.

05-10-2008, 10:56 PM
Welcome GBabyMomma,

Many rhuemys will start you out on Plaquenil; which requires an opthamologist to get a baseline prior to starting the meds. Hopefully, the plaquenil will get it under control. Every 3 months you will need to visit the rhuemy for blood work to check to see if it is under control. Plaquenil also builds up your defense to sun sensitivity.

Keep us updated and take care,


05-10-2008, 11:04 PM
Hey WantItGone (waving),

Inflammed with lupus or fibromyalgia? Burning or joint aches? I switched from Flexeril for the fibro to Clonazepam tab. .5 mg (generic) Klopinon and it seems to relax the muscles better at night. It is used for Fibro off-label; typically rx'd for anti-seizures. I have not had any side-effects whatsoever. Better sleep.

I am glad you are "cool" and I am hoping you feel better soon. It is good to hear from you again. I am counting my blessings also.

More forgetful and primary is considering CT or MRI to rule out Lupus in the brain. I really think it is mainly cognitive due to fibro/lupus fog. Taking it day by day.

Take care,


sick n tired
05-11-2008, 10:46 PM
Hey Oluwa,

I traveled through some of those storms, today. I drove 13 hours. I was supposed to go through Shreveport to my brothers house, but he didnt answer. It was mothers day and I think that he and my sister in law were out of town. Anyway I just decided to go through Arkansas and go home. My legs are very swollen and I feel light headed but I am glad to be home.
Oh I see you asked what state. Actually it is what states. I left Texas and drove to Shreveport,La to see my brother and mother. Then through Alabama(stay for a night) , through Georgia, Mississippi and to Tennessee.(stayed there for a few days in various cities) then to Virginia (my son's university and back. We did stop at Dollywood in Pigeon Forge Tennessee through Arkansas.
Nadia has a Ct Scan tomorrow at 11...we might be able to see if it is growing or not.

sick n tired
05-11-2008, 10:47 PM
Hey Faith,

It is good to hear from you, too. So no beard on Dhea...hmmm great.

Hope you are feeling fine.

sick n tired
05-11-2008, 10:52 PM
Hey GBabyMomma,

Congrats on the new blessing....I have 10 children and am here to say you can do it. Just need some rest and it would be great if you have someone to help. I didn't have anyone except hubby and he was away at work. I am not sure how I survived, but I did....You have to watch the stress factor. Like most of motherhood it is a juggle.

Oh by the way...HAPPY MOTHERS DAY

05-11-2008, 10:52 PM
Hi Karen,

How in the world did you drive that many hours by yourself? Wow!!! I couldn't have done it.

It's good to hear from you too. No beard on DHEA; though I haven't noticed a big difference really.

How are the legs? You need to take care of yourself. Nadia is in my thoughts and prayers.

God Bless,


sick n tired
05-11-2008, 11:17 PM
Hey Faith,

I was just asking myself that.... but the grace of God I guess...I just wanted to be here when Nadia had to go to the Doctor.

My legs are really swollen...I hope they are better tomorrow.

05-12-2008, 05:45 AM
You all just amaze me. I don't know how you stay so positive. I drag myself out of bed everyday and I feel guilty for not having the energy to play with my kiddos. My husband has not exactly been helpful and yet I think alot of that is because he has no idea what this disease is. He is normally the most compassionate man in the universe, but lately he is a pain.

Will my meds vary b/c I am pregnant? I hate being shifted from one med to the next in a 'trial and error' to try to figure out what is best. How often do meds normally have to be tweaked to keep things running smooth?

Do these symptoms get better? I can't live this way forever.

I feel like I am drowning in pain.

05-12-2008, 09:16 AM
I am sorry to hear that your husband is not as supportive as you would like. I often recommend that it is very important that our loved ones learn as much about our disease as we do. Only with that knowledge will he be able to become more understanding. You can print some of the posts on these forums and guide him to some websites on the internet. Also, you can purchase some books for him (I always recommend "The Lupus Book: A Guide for Patients and Their Families: Daniel J. Wallace).
Yes, your meds will probably vary due to your pregnancy. But, that would happen to a person who does not have Lupus. Not knowing which meds you are taking now prohibits me from giving you any idea about which ones might be changed.
Trial and error with our meds with Lupus is a common thing for almost all of us. Lupus affects each of us differently (no two persons have the same symptoms with Lupus) and all medications do not affect us the same. 5mg of Prednisone might work well for one Lupus patient while the other may need 10mgs/day. The person who is doing O.K. with 5 mgs may only need to take that dosage for a month while the person on 10 mgs may have to take it for their lifetime. It has to be a trial and error in order to find the correct combination with the correct dosage that works FOR YOU! How often the medication will have to be tweaked will depend entirely on how your body responds to them and what symptoms they are for and weather or not the medications are resolving the issues with those symptoms and the length of time you've been on a particular medication at a particular dosage. The process could take a week or two or (as was my case) more than a year. Even after that, my symptoms continued to change and, conversely, my medications were changed to fit the symptoms. Since Lupus is an ever changing disease, you can expect that your medications will also change as often as the disease (and symptoms) changes.

Peace and Blessings

05-12-2008, 10:04 AM
Thanks for all the great advice!

I am on 10mg of prednisone a day and it doesn't seem to be doing a thing. However, the rheumatologist I see is almost two hours away driving time and with three small children that is a nightmare.

I have a GP here in town, but have been thiking about switching to an internist that practices here in our town. What do you think?

This is awful. I wouldn't wish this on anyone!

One more question: When someone is diagnosed with lupus, is it common for them to be diagnosed with fibromyalgia also? I know so little and don't seem to be looking in the right places to find my answers.

Thanks so much!

05-12-2008, 10:24 AM
Welcome GB! And congradulations on the upcoming little one! I myself have 2 boys, ages 8 and 9.

My GP diagnosed me with Fibro and lupus even though I currently don't have any Fibro symptoms. I have read that lupus and fibro tend to go hand in hand. Fibro from what I understand (saysusie can correct me if I'm wrong) is fairly normal to have in any disease that causes chronic pain. Though you can have fibro and nothing else. The brain rewires it's self to deal with chronic pain or sometimes any trama that involves pain and fibro is sometimes the result. That's pretty much how my doc explained it to me. The only thing I take for it is flexeril every night.

I can totally understand the 2 hour thing. When it's my time to go to the specialists I too will have to travel far. I'll either go to Longview, TX to a diagnostic clinic or to Little Rock to a rhuemy. Both will be a 2 or more hour drive away. There is a local rhuemy here, but my doctor doesn't think much of her. I'd suggest if you trust your GP, to talk to him before you change to anyone local. If your GP isn't doing what you think they should then by all means seek help elsewhere.

05-12-2008, 10:46 AM
Hello GB, your hubby sounds like mine. I love him, but not much support when I need it. I learned my hubby just doesn't know how to handle things he can't control. With having fibro and who knows anything else, life's hard at times. You have strength, we all do. Its how we get up each day and do it all over again.

Many congrats on the new baby, thats what will make it all worth it as well as your other little ones :D .

05-13-2008, 12:40 PM

Any advice on how to clue him in without making him go on the defensive about how he is acting? I think a big part of him is just lost as to how to help b/c he realizes he cannot make this better. Do you know of any books I could recommend to him that would explain it without making him feel like he hasn't done what I want him to do? I don't want him to fix it b/c I know he can't. I want him to understand where I am coming from without any guilt or shame.

If there was any way I could change this I would, but God must know I can handle this b/c He chose for me to handle it.

Any advice would be good!

Oh, any advice for relocation and how to make it easier on me without taking my kiddos completely out of their element from now until we move?


05-14-2008, 08:48 AM
Hello GB, I'll do my best. My minds all mushy today, so forgive me if I answer and it doesn't fit the question well.

For hubby, I' still trying to get him to understand. I take with me to docs, so he can ask or at least hear the info and what I'm suppose to do and not do. I tell him when he complains that I'm going at the best pace I can for the day.

For kids, when I'm really tired I sit and read to them while they play or sit with them through there tv shows and laugh and point or comment. Outside is harder. I use wadding pool and spriklers to keep them close. Although clean can be a hassle, but they're calmer and not so wired. Fo my hose work I clean in the morning or evening after kids asleep so to give me more time during the day.

Are you moving? Asking how to do the work while pregnant? Asking how to help kids cope with moving or the new place?

I hope I've helped some, ask more if you want. I'm glad to help.This is the only place anyone seems to understand and help me. I'll be hear if you need me. Ask away, I'm listening :D .

05-19-2008, 01:02 PM
I go something like this...


I am here.
Putzing along.
I've been better.
I've been worse.

Be well,

05-19-2008, 01:10 PM
Hugssssss Oluwa till her eyes pop out her ears :lol:

sick n tired
05-19-2008, 04:01 PM
Hey Oluwa

Wondered where you were. Im glad to "hear" from you. :D

05-19-2008, 04:13 PM
sick n tired

That grand daughter of yours is truly the cutest little thing I've ever seen! Such a little sweetie. I'd have her spoiled rotten.

05-19-2008, 06:52 PM
Hello dear Oluwa, was getting a little concerned. Glad to see you post at least something. Whats wrong? Whats got you down sweetie? Shall I smack IT for you? I do love reading the things you write, have been missing seeing you post. Gentle hugs, trying not to squeeze to hard. My ears are open to you always. :D .

05-19-2008, 07:13 PM
Hi Granny Karen..she is so cute.

SITC..gee thanks. I think. Am I seeing out of my ear, or am I hearing with my eyes?

Hi Cheryl..

Please do give it quick cuff upside ITs head...a smacking about the room

Wrong...Ah, a myriad of things, but my spirit is alright today. Body, spirit...it seems I always have to give up one to the new day. Not my choice. IT does it for me..

Just trying to get this pain under control without numbing my brain. I can stay off some with my thoughts, but not all.

It has been a bit since I've moved about the forum. I made my rounds today. Not everywhere, but some...

I have a Neuro-Spine appointment Thursday, maybe he can take away this back pain, like johnny on the spot...now. If it isn't that, maybe my Rheuma can on the 28th.

And how are you? Thank you for the hug...


05-19-2008, 07:53 PM
:grab: There, I grabbed IT and gave it a piece of my mind and a good sideway smack for you. Glad you're able to keep your spirits up, it does help. I do hope both appointments go well and one of them give you relief of some kind. I have pain too that I keep fighting to keep from controling me. My feet don't want to stop swelling on the top and hurting. I prop them to relieve, helps a little. Until I stand up, wow the pain. My neck stiffens and hurts off and on and nothing seems to relieve it. Did go to the beach again, I bought a season pass and some boggie boards for the kids to use. They were a hoot to watch. My daughter seems to have no fear, even when she broke away and the wave nocked her under for a second. I yanked her up and she smiled and took off again, she's going to be a handful :shock: . How are your days going, or is the pain just keeping you to a minimum of doing.

sick n tired
05-19-2008, 08:06 PM
I'm trying SITs....I am trying....

I totally agree with you...she is adorable...in that pix she was just starting to smile. She was smiling and cooing with me and my hubby was standing over me taking the pictures.

05-19-2008, 08:22 PM
Thank you Cheryl...Ah, that is great...the weekends have continued.

I used to body surf when I lived in Hawaii...it has been eons. I am waiting for the pool to warm up a bit more so I can don my fins. Swam already, but way too cold for me for a another dip...

Try some warm moist compresses for you neck, or a masseuse. Or Lean you head to the left shoulder. Gently rest your right hand on the side of your head and let the weight of you hand stretch your neck. Now try the other side....

Ouch, and we need our feet...have you tried the bath treading...walking in cold water. Or alternate by running cold then warm on them under the faucet for the swelling?

My pain..trying to visualize it and breathe it away. Too many opiates numbs my brain, I can't think on them.

Enjoy your sleep..my bed time has arrived and I haven't accomplished much. Hopefully tomorrow I will feel more productive...

Till the next light..hugs,

sick n tired
05-19-2008, 08:27 PM
Hey Oluwa,

Thanks for the complement about Lexie....Granny Karen :lol: Actually, I am going to stick with Grandma...I was thinking of Abuelita, (a hispanic term for grandmother) but have
decided to keep it simple.... :)

05-20-2008, 06:01 AM
Hi Oluwa, I wish I had learned to body surf, it always looked like so much fun. I always went to the beach to swim, loved swimming against the current. I can't do that anymore, barely able to swim with current and even that's hard. I look at the water with such longing, oh well.

I try to visualize my pain leaving, its relaxing at times. I don't like taking pills if not needed, so fighting pain naturally seems to be all I do (I don't like a fuzzy head either). New pain today, my face hurts a little. What can cause that, is that normal? Probably just a new one for the journal I suppose. Hope your day goes good and everyone lses too.

Just had to say too: Karen, she's gorgeous.

05-20-2008, 06:53 AM
Hi Cheryl..

I slept like a rock. Took two Lortabs, one Flexeril with my other pillets...and I was in lalaland. I tried to go without, but the pain was burning a hole in my dreams. I woke to the same nagging pain.

Pain in your face...spot pain or the whole face? Any sheet wrinkles embedded in your skin, or a finger print, teeth grinding, tooth root pain, swollen or Bells Palsy?

Body surfing...One time at Little McKenna Beach, nude beach, in a cove on Maui. The first time there I said, oh I can't go nude...okay, maybe just my top. Who knew, I would took it all off. I didn't feel naked, I didn't feel sexy, it just felt good to feel the sun, to relax without the worry of lines..

It wasn't sexual, or pick-ups, though I did see a few kick stands..it was just like a regular beach with tanned buns..

But anyway...I was body surfing nude and one of the local guys came up under me and I was on his back like a surfboard. At first I was startled..what the..and then I laughed all the way in as I rode the wave with him...

Before I've mentioned my Auntie who is now 87, she came to Hawaii when I lived on Oahu, we, sister, Auntie, Mum and me... island hopped to Maui, and she wasn't modest. Took it all off...she was 67.

I too long for the beach...cooler filled, listening to the waves crash...playing Mancala till the sunsets..pit stopping and get a mango, papaya, Macadamia nut frozen yogurt cup..ahhhhhhh. The sun used to be my cure now it is my sickness...ugh.

Daycare? More children?

Enjoy your morning...

05-20-2008, 09:05 AM
No more new kids. The newest wild child only comes 1-2 times a week to ease him into the rules and schedule. If he will not abide, then he has to go. Its been hard. Since its only $10 daily (they bring their own food), I've only been bringing in $50-$90 a week. Tough, but I keep hoping to get more buisness.

The face pain is a dull ache thats from below eyes down. Mainly the sides and my lower jaw. No impression in my skin, I don't think I clench my teeth. It started a couple hours after I woke up. Come to think of it, I'm all around just not feeling good. A mouth sore and queezy tummy thats making food hard to eat or even want. Eyes hurt, neck, feet hurt too. Some sharp pains spurratically throughout body. Really light headed, tired and just all around crappy. I started my period 10 days early yesterday, but it doesn't effect me like this. Just wierd feeling and tired. Temps around 96, so no fever. Felt pretty good this morning, now crappy. I think I'll just stick to my water and soy milk today and see how that goes.

Your day any better, I hope its going good. Sound like you loved being an island girl.

05-21-2008, 06:51 AM
Hey Cheryl,

Feeling better today?


05-21-2008, 01:02 PM
Hi, only a little. Lost 4lbs in 2 days though, oops. The soy milk is helping a little. Still really tired, chat more tonight. Are you doing ok? I hope so.

05-21-2008, 02:01 PM
I have been talking with Karen about a new drug that the doc put me on for GERD symptoms. I totally forgot about your struggle with it, until Raspberry made a comment on our thread "has Oluwa seen this?" It is under the Lupus Symptoms category, and the thread is GERD. It explains a lot about it. Don't know if that sort of thing would help you, but I would be happy to tell you more about it, if you are interested.
That goes for anyone else out there who struggles with slow stomach emptying and or GERD.
Hope you are doing well today. It has been extremely warm here (for the Northwest), and I am not responding well to the increased temps. Hubby had to put a big window unit into my bedroom, so that I would have a "cool haven" when the temps go up. Everyone else here is basking in the warm glow of the sunny days, but I am hiding in the shadows. Made the mistake of going out for just a few minutes Saturday to find the sprinkler and set it up for the kids. Literally was purplish red, sick to my stomach, headachy, and covered with hives by evening. Took a couple of days to recouperate (10 to 15 minutes - tops!). That is the worst thing, I think, about Lupus. I feel like a mole. Wish I could send our warm air your way, so you could enjoy your pool.
Be well.


05-21-2008, 03:42 PM

What can we do to make you feel better? Four pounds, two days not good. Dehydrated? Try something bland..oatmeal with a bit of butter?

Face in pain still?

I'm just lazin' moping about. I sleep hard but I have an extra dose of feeling run down lately, dizzy with a dabble of malaise. Actually I have been going down hill in fatigue for about 6 weeks.

I am going to consider stop dosing with my more recent prescriptions,....

I believe the malaise and dizziness if from the Prometruim and the tired feeling is from the Flexeril and Lortab...

My Rheumo appointment is next week..maybe he can give me a plan. I just don't like it when I lost the skip in my step..



Thank you, I did see the post of the drug. I did a quick search on it. I have an appointment with my Gastro on the 28th, follow up from my Upper Endo and see where my stomach and esophagus is at, I will ask him...

It is just amazing, sad how the sun can make us so ill. The very thing that makes life grow, thrive and we wilt in it....maybe that is why I feel a bit bleak, I miss how summers use to be for me....

I am glad you were able to recover without going into a horrific flare...

Our temperature outside is great. Hot...I believe it was 90 yesterday and the pool was at 80. I was ready for some dippin's, but a storm came and the closest I came to water was when I got drenched cranking the patio umbrella closed. Didn't want my umbrella to propel off, we had tornado warnings and a severe thunderstorm in my area yesterday.

You both enjoy the evening..


05-21-2008, 04:50 PM
Awww poor Oluwa...hope your rhuemy can get your meds straightened out so your not so dopey.

05-21-2008, 06:44 PM
Me too SITC...

05-21-2008, 09:08 PM
Hello Oluwa, thanks for asking about me. Took tylenol arthritis and that helped a little. Never took it before, not too bad. Face still hurts, but milder thank goodness. This fatigue is just relentless, guess its just one of the bad days. Did get some house work done and managed to take the kids for a walk. The fresh air was nice.

I hope all goes well for you at the rhuemys next week. I see my new one in july. I have to bring everything doc has, and have a conceltation(sp?) before doc visit. They do x-rays, blood and urine test. All that gets sent to my doc 4-6wks later, then they'll say if they except me.

Hows your tummy? Surprisingly animal crackers soothed mine a little. Took a bite to show lil miss it was good, and noticed it soothed the tummy some. Had me some for a snack and later was able to eat a piece of the pizza pie I made for dinner. Sorry to hear the meds got you wiped out. Well, I'll chat more tomorrow, 5:15 comes quick when its already past midnight. I never have slept much more than 5-7 hrs anyways. Good Night All :D .

05-22-2008, 04:19 PM
Hi Cheryl..

Maybe you should make an appointment to see why your face hurts? Could it me your sinus cavity? Irritate tooth root? Happy to know the Tylenol gave you some relief...

An animal cracker...so tiny. I could eat the whole zoo..

My appointment...wasn't. I waited for 65 minutes and left without a word. My tolerance level for patience is rather low lately. Three hours of my life I will never get back. One there, one waiting, one back..

It is an hour away...not far in distance, 33 miles but the traffic is always awful on the connector. I feel like sending him a bill.

I went to sleep with a bit of attitude about doctors being late...In the holding area, I just kept thinking, if I do get to a back room seating in an airy gown, then it would be at least another 15-20 minutes waiting to see the doctor in a 5x8 room. To be poked like cattle for another 30. The more I thought about it my back burned intensely. I broke out in a sweat and left. Popped a 1/2 Xanax...

I don't know if I am disappointed with them more or with me for running out of patience.

Thirty minutes later I found myself in the mall parking lot... Three shirts, jacket and a pair of cute shoes later...

Crossed the street to Best Buys to investigate their latest DVD's for my husbands birthday. DVD Convert to 1080i, Blu-Ray, TiVo, Dual TiVo..HDMI, tuner...$79.00 to $599.00. I left all spun#$@%! No clue....

And thank you for asking..my tummy is doing pretty good. I was telling Saysusie there is a bit of pain were the esophagus connects to the stomach. I am wondering if that is where one of the biopsies was taken or still irritated. I still dose with Protonix.

I am assuming since no one from the Gastro office called about my tests, there was nothing that requires immediate attention on my innards, but gastritis...I hope.

But other than the pinch of pain...all to me seems good in there. No more slushing and gurgling. Food not get held up in the tube. My food seems to be moving to my small intestines, but I think it depends on what I eat. Yesterday I had clams, six hours later I was burping (pardon me) the taste, not the food up...so, dunno. Same with a protein drink. Filled, literally... stuff from an 12 ounce drink I blend with crushed ice for five hours. No room for Jell-O...

Six more days till the Gastro and Rheuma..I won't walk out if they are late. My husband will be with me...

Is a storm brewing down there...I believe we are suppose to get one tomorrow.

Hope your body was nice to you today and the out of control boy was too or was it your day off from him?


05-22-2008, 04:36 PM
awwww Oluwa, sorry you got shafted by your doctor :shock:

Three hours of waisted time! Yikes.

05-22-2008, 05:23 PM

Humm..or did he get the shaft?


05-22-2008, 07:37 PM
Sorry about the doc app., I know how you feel. I waited a few months ago for 1hr 15min, then almost another hour with waiting and seeing doc in the room. I couldn't leave because I'd already paid for a sitter to run the day-care and got someone to drive me in my van. I don't blame you, I would have left if I could have. So glad your tummy's behaving, and no news is good news from docs office.

It stormed all around us, the trouble with living on high land. Storms tend to travel around the hills. 90% chance rain tomorrow, I hope so. So many plants to water, I got to quit buying them :D . They are my favorite gift to myself. The weather is probably why I'm feeeling this bad, much better today though. I feel storms days ahead of time, then get better when they get here. I was able to eat 1 stufffed-bellpepper for dinner, one of my favorite meals.

Wild child was not here today, only had him monday. Good thing it turned out that way. Haven't felt that bad before, barely able to mope around and get things done tuesday. Then each day got better than the one before.

Best Buy is my hubby's favorite store. Bought him a DVD player/recorder last year for him. He has TiVo, so he can record and save favorite shows and movies. Now he can record very favorites and watch when-ever and where-ever. Although I learned to get one that records dvd + or -, that way I can buy blank dvd's on sale no matter which kind.

Time for cleaning before bed, I've put it off as long as I could. Good night all, may we all sleep well tonight :D .

05-22-2008, 07:50 PM
Night, night..sweet dreams..Z-z-z-z-z-z-z-z

05-23-2008, 05:35 AM
I go something like this...

Ah, now I regret my decision to leave. I should have stuck it out. Now I am back to square one.. :?

Sigh...silly me...

05-23-2008, 05:39 AM
So sorry, rough day already?

05-23-2008, 09:07 AM
Hey..Nope, not a rough day, just evaluating my actions....so...

I called the Spine Institute..I asked, Hey, ahem did you notice I had left? They apologize, and asked would I give them another opportunity to make it right...I did.

They have an office closer to my home, 30 minutes, who knew...so I am on the schedule for the 23rd. I wish I had known that earlier...

Actually I am doing quite well, IT has been good to me. I'm at "my norm". Now, my back I can handle with pain pills, just my thinking becomes dry and muddled...don't I read monotoned and boring?

When the VHS to DVD recorder came out I purchased him one. We had VHS tapes we wanted to transfer to DVD. Still new in the box while we moved, while we waited for our house to be built. All excited to do the transfer..couldn't format the DVD..humm..a few telly calls later. You could only record on a certain "name brand" DVD the service department informed us. When I obtained them, couldn't format...and while watching movie DVD's it froze. Warranty expired before we opened it...our fault on that....so basically it is new, but useless in a box.

We have been using our old Sony DVD..

Plans for the weekend, Memorial Day? Beachin' it? Us..my husband likes Baby Back Ribs, so I bought two slabs, if not, a whole bird quarted...grilled burgers.. Probably just a traditional BBQ, spud salad...swimming and a cocktail.

My father, a snowbird has a place on the Gulf Coast side of Florida, just north of Tampa...are you inland? Atlantic side?

Face back to normal?

Enjoy the day....

05-23-2008, 09:51 AM
Hello, inland is where I'm at (central FL). Tampa is where my baby sis is moving to tomorrow. I'm glad your going back, turned out to be good you left. Now you have a closer one to go to.

Tomorrow we are going to Jax Zoo. They have there new stingray exhibit open. You can touch and feed friendly stingrays. Then home to cool of in the pool and a mix drink to unwind. Rest of the weekend unsure of what yet.

Face is a mild ache that seems to finally be fading. Not sure if want to call doc, just probably try yet another steroid. Not wanting to try again yet. Oh, the other forum where you posted a link about neuropathy symptoms. I checked it out and almost freaked :shock: (so to speak :lol: ). I have quite a few of those problems, not all of course (no one does). The dropping things like that, the feet pain, and what I would refer to as lead feet and legs. Those tingly sinsations and pains are things I would try to explain to doc, but couldn't get it worded right. I don't have the problem of bp dropping, mine rises. So much was so similar, I saved the page for hubby to read.

What are you doing for the weekend? Love to know. Hubby's pulling a double, so won't be home until after midnight. Got a somewhat quiet evening to relax a little.

05-23-2008, 01:13 PM
Hey Cheryl...

The zoo, that is fun. Going at feeding time? I love the Hippos, Orangutans, Chimps, Elephants...oh, I love it all. I hope the animals are happy enclosed, all for our pleasure...

I have symptoms from something. I have two toes that feel like I have a ring around them. Times just my leg from sitting. My right side while laying gets all tingly. Like a rush of goose bumps but none to found. And my left arm, does the sleep, tingling, numb thing. I get dead skin spots. Feel picky after a shower...like I am poked with pins..

For me I don't know if it is a side affect of IT. I assumed mine has to do with my neck and back surgeries, sciatica, laying wrong...or from sitting on the loo.

I drop things too. I assumed that was from having carpal tunnel surgery...or when my lumbar gives me a shock.. then I jerk from the surprise, the zap.. not pain.

I'll point it out to my Rheuma and see what he says.

Have you ever did a crock pot dinner...today is my first. It is just too much to begin preparing dinner at 9:00 - 10:00PM at night on Fridays anymore. I hope its yum-oh. I hear people rave about them....dump it all in the morning, cook all day...viola dinner when you get home. Not mushy? It could save a bit of wear and tear when actually I should be going to bed at that time....I hope, I hope..

I bought this pot in hopes my husband would try, learn to cook...but it has sat in the box for 4 years.

Oh my...The sky is screaming here, the dog is howling and barking at the sky....storm is coming, it's here. I am going to shut down the PC...I'll pop in when it passes...


05-23-2008, 01:53 PM
Hey Oluwa, my hubby calls me the crock pot queen. I've been cooking with one all my life, my mom taught me the basics and I bought a recipe book for slow cookers. For all day you put heat on low. For 4-6 hour cooking put it on high. If you have question, ask. Those things are how I get dinner on the table at night after kids and the day-care and house work. I love beans in them, the only way I cook beans.

The Jax Zoo is great, the animals are in more of a natural habitat. They call it "growing, not mowing". There's different regions like Africa, Florida, etc... Even the birds fly around you. In the bird area you walk through double doors to a huge neetted area where they walk around you, swim and fly. The regions have all the animals roaming around together (devided areas for the dangerous ones). They have huge ponds too. They put barbwire on the trees to keep ones that can climb from getting out. You walk on bridges that go over them, so not to disturb there ground area. Some are in cages, but very huge cages with trees and plants. I love it there, they're all for the animals. They have a water and play park for kids too. Only reptiles are kept indoors, do to there cool climate needs. Its one of our favorite places to go.

On the problem of your DVD, we had done the same thing and got so aggrivated we tossed it. Now we bought the one I mentioned from Best Buy for $200 (LG model). My hubby's good at electronics, he wired the vcr to the dvd to record the tapes to dvd. I like it, works good.

For your toes, that too I understand. My right foot, the toe in the middle and to the right of it have that feeling. Haven't really noticed when it happens, just feels as if I wrapped my hair ties around them. I do love your pics you choose. Where do you get them? Boy, I'm the chatter box today :D .

05-23-2008, 02:36 PM
Well, that was a teaser of a storm...wondering if the best is yet to come. There was one forecast for today...

Crock pot. I tossed in rutabagas for me, spuds for the man, baby carrots, button brown mushrooms, salt, a bit of H20...and topped it with a seared cut in two pork loin, and several caramalized shallots.. I didn't have a recipe..humm seems it came with one. Must be in the warranty box..in the attic. I searched at crockpot.com for a recipe, but it required canned or dried soups or broth. We don't do those....So, did I do good?

I don't smell it yet, it has been crocking for two hours...

Maybe I will be crowned crock pot princess...you being the Queen...

Those are the same toes as me...humm.

That sounds like the bird sanctuary on Oahu...It's like you're in this huge bird cage with the birds.. Jurassic Park like...

We are going to BBQ, the usual items this weekend. Everyday over the weekend would be lovely..less kitchen clean up.

Oh, before I forget...we love beans. I would love a recipe for the crockette, thanks. I use my Grandma's, my Dad's Mum's recipe for baked beans. It is an all day event in the oven. I was always asked to bring a pot full to family gatherings. Today, for my husband I do Bush's and Bush's Chili in the jar's. Sometimes, for us, I make bean soup...

Look for a PM..


05-23-2008, 02:45 PM
Hi, Cheryl.....sorry for the trouble you've been having with face pain. Is it better? Hope so... Hey, enjoy the zoo...I LOVE zoos. We have a tiny one here, but it's very pretty and our granddaughter loves it. We buy a 'grandparent' membership and take her all the time. They just got 3 lion cubs....sooooo cute.

Oluwa...how the heck are you!?! Wasting 3 hours in the doctors...grrrrr. I'm glad you rethought your decision and are going back, though. Sometimes I've been known to 'cut off my nose to spite my face' and I always regret it.

I'm part of 'crock pot royalty', too, Cheryl! My mother got me my first crock pot probably 30 years ago...yikes! :shock: I live in Minnesota and it's really wonderful to come home to something hot at the end of the day when it's 20 below zero! Any time of the year, though, it's great to let the crock pot do the work (well...except for the chopping and seasoning!) If you don't overcook (too long on high heat) things won't get mushy. Meat is often best cooked long and slow - it'll tenderize even the toughest cut of meats. Check out recipes online - I'll bet there are a zillion of them.

Hope you are ALL well this fine Memorial Day weekend.


05-23-2008, 03:20 PM
Jody, Jody is that you...lovely to read you...

So, how are you? I was looking for you... Making your rounds?

Cut off my nose to spite my face, is exactly how I felt when I woke up. I feel pretty good though. I don't know if its my spirit that topples first and magnifies the pain or the pain wreaks havoc on my spirit. Either which way, they both get huge and I mope about...Both have lifted a bit and I am done moping.

I think the pills affect my disposition a lot. Last night I went to bed cold turkey...just Plaquenil and Prometrium. I did alright. Popped a Lortab today though..

I think my Mum never did the crocking, because too many mouths to feed. Ten including my parents...She would have needed a Crock Vat.

I bet barbecued pulled pork would be great in it, eh? Recipe to pass down?

Wishing you a well, wonderful filled weekend too...


05-23-2008, 04:52 PM
Hi Jody, thanks for asking. Face is down to a dull ache finally. I would love to see those baby cubs, bet they are cute. You must be that crock pot queen from up north I heard about :lol: .

Hi Oluwa, what you did sounds good. I don't much care for canned soups and things like that either. I use mine like a little roasting oven at times. Put the meat in the middle, surround with veggies, sprinkle herbs and seasonings, and fill half to 3/4th way with water. Cover and cook low 8-10hrs or high 4-6hrs.

My beans: 1 bag of favorite beans (black-eye, pinto, great northern, etc..) rinsed and put in pot. 1 whole medium onion, peeled. 1 whole celery stalk with leaves (the leaves add really good flavor), break in half if needed. Sea salt and pepper to your liking. Fill 3/4th the way with water. Cook low 10hrs. Remove onion and celery and throw away.

My pulled BBQ pork: Place pork in pot, lay a peeled whole onion on top with 2 tsp minced garlic. Fill up with water a few inches from top. Cook high 6hrs. Drain meat and remove onion. shred pork and put back in pot, add BBQ sauce and little water until a little saucey. Cook low 2-4 hrs.

05-23-2008, 04:58 PM
Wanna know something cool. I keep forgetting to mention it...

When it starts getting hot outside, and the frogs are out and about I crack the garage lift door oh about 6 inches because times gecko and frogs hop in when we leave it up while in the yard. I have found a few who have died of dehydration...sad sight for me.

Lately when I came and gone through the garage side door or through the lift door I would hear rummaging. Oh, it just a lizard or a froggie..."Oh, hello there.." I would say.

Early last week, fluttering about was a bird...I opened the door all the way, out it went. Thinking oh, no it had been in there since the last night. I brought it back down to the 6 inch crack..

Days later, a bird again...humm..getting underneath the door...is it making a nest?

I looked up on the top of the cabinets, quickly sniffing about the shelves..nope.

Next day, there was Miss Birdy again...I searched for a nest again. Ah.....I found a little nest. I could just make it out from the twigs and ferns in one of my empty terra cotta clay pots on the shelf. I left it be...

So, she is the one tearing up my hanging ferns...

Well the other day, when she left. I tiptoed to the pot..used the step up, cocked my head and it is round hollow ball with a little peek hole....ohh, I see one two, three...six eggs. They look like pale colored Easter Peanut M&Ms. I think they are light blue and so tiny...

The Mumma bird is so small too, she could fit in my cupped hand...I wonder what type of bird. Brown, white...and tiny..and quick..

If I am able, I will try to take a picture...I have one of those cameras with the LCD screen that pivots and flips so I just maybe able to pop off a shot with out disturbing it. I don't want her to be afraid or abandon her eggs.

Oh, how she is getting in, it is the space at the top of the garage lift door...

She was there this morning...

It's nice,

05-23-2008, 06:12 PM
Hello, All,
I have been reading the last few days of this thread and getting hungrier by the minute! The recipes are great.
One of my favorites is to use the baby white northern beans (soaked over night the night before to plump them), onions and celery (lightly sauteed first), chopped carrots, and spices to your taste - I love things a little spicy, so I use more stuff, but salt, pepper, a little garlic, should suffice most tastes, and some big chunks of ham - oh, and of course some H20. I generally make this with the odd chunks that are left over from a big ham meal. Let this cook all day, then use about 1-2 tablespoons of corn starch to thicken the broth, let that simmer a short while - and you have a lovely bean and ham soup. Being a life-long, until recently, Southerner, I serve with corn bread muffins, but any nice bread and a salad finishes out this meal for us.
We shall have the typical barbe-que this weekend, but with the addition of hand-cranked home-made ice cream. A must have for Memorial weekend in my family.
Enjoy the weekend all,

05-23-2008, 06:18 PM
Sounds like you have a firn. They are small and so cute, I love seeing them. I have some red and blue birds and occassionally a humming bird. I have a whipperwil (sp?) in the woods across the street that drives me nuts sometimes. They sure do live up to their name. It sounds as if they are holloring the word. I think its a good thing for you to leave the door cracked for the little things to have a cool place to go. I leave my garage door open for the dogs, cat, frogs, lizzards. I have to be careful, occassionally a scorpion gets in and those wood spiders :shock: . We used yo have one frog that would not leave the carport and garage area, so we named him Fred :lol: . He finally left last year.

05-23-2008, 06:26 PM
Hey Susan, your recipe sounds yummy. Cornstarch? Have to try that, I always took some beans out and smashed them and put in the pot to thicken sometimes. I don't eat meat often, so I forgot ham or bacon is good in it. I like to make spegetti sauces and other meat sauces in crock pot. That way I only have noodles, rice or potatoes to make to pour sauce over. I make home-maid ice cream sometimes, I'll have to make some this weekend. Thanks for the idea :D .

05-29-2008, 08:15 AM
I go something like this...

I haven't been much of a sister to anyone lately. I don't feel I have anything to talk about anymore. I feel I am IT.

My world has gotten so small, so small about the size of one hand cupped. Trying to convince a part of myself that life is good. One half knows but the other half I am still trying to persuade...to think, to feel otherwise. I will find my way. I always do.

I've been evaluating myself, wondering where it grows from. Hummm...a small part of my conclusion as it is complex. IT and IT's cronies leaves life even more complex to live, eh?

The small part...as I press my face against the window looking outward from my cold A/C house I see summer, I want to be a apart of it. Like it was before I got in this tangle with IT. In mourning again? Probably. I don't want to settle for something other than what I want.

Longing, remembering how my relationship with the sun use to be. Though it warmed me from the outside, it felt like it pulled the warmth from within me. Warming me from the inside out as I basked in what gives me life. My down light hair would rise and wave as the warmth came to the surface, the warmth was my spirit enjoying the life, the food that the sun gave me. I miss those long sultry sandy days where every once in awhile your peach fuzz hair will catch a passing breeze...

Floating in the water,the buoyancy... feeling the ripples as the small waves splashes ever so small over my cheekbones. Sky so blue...eyes squinting past the sun rays, to see the ball through it's shine. It almost looks like a silver black ball past all the gold. As I hide behind my sunglasses, even hiding from man made light I miss those days, the weightless days in the ocean. Wishing I was that island again..

My appointment yesterday went like this...

Gastro...My stomach isn't like an SUV tank of gas. Gulp, gulp, gulp...then on E. My fuel is staying in my tank too long and my gage after going about my day still reads almost full. Prescribed a daily meal tablet, Reglan to move my food out of my stomach faster and for my path of absorption, 17 grams of Miralax Powder mix with my favorite morning drink. On the move is our goal.

After a stomach dilation the sphincter between the esophagus and stomach may not seat properly. The hole is too big for the cap till it heals..mine is apparently not seated.

I'm to wait for four weeks with my new tablet regime added to my Protonix. If, no change I will be scheduled for a Esophageal Manometry to see why I am not healing. Possible Scerloderma of the esophagus he mentioned. Scerloderma of an organ is part of IT's rampage too...ugh.

The biopsies...no infection, no bacteria no cancer, no H.Pylori anymore. I am grateful for that.

Rheuma...He reiterated what we know. With or without a positive ANA, AntiDNA I have IT. I have/had at least seven of the eleven while under his care he said as he defended his diagnose against the Rheuma's at the MUSC...

FMS symptoms. Lyrica prescribed after a two and half hour stint in his office alone. Doesn't include my travel. I waited and waited some more. I wish I could find a Rheuma...someone who is like my Gastro...his last name is Goodear. How appropriate I thought. We talked of scaryroids...I said no. Rheuma again prescribed CoQ10 for fatigue...this time I will use it longer. No opiates, slows the digestion down and will defeat the purpose of my Gastro's regime. I hope the Lyrica works. I hope everything works. I will pray more than hope.

Three to five minutes on the treadmill was suggested. I will get pass the fear of laying in bed for three days after the brief machine walk. Start small I will remind myself..and I thought 10 -15 minutes was small. I use to think..Ha, what will five minutes do...now I am reframing my mind to think what damage will the lack of five minutes of exercise do. Only good can come from those three to five minutes. I will adapt and pray this will ignite energy and not rob anymore, because really I have none to spare anymore...

I asked last year with my very first post, is this a life worth living? Yes, it is. I will be patient and wait for another good day. Praying one will be here tomorrow.

I just want to shed my pills like clothes and run in the sun...

05-29-2008, 08:54 AM
I will be praying with you and we will vision that good day - just around the corner. In our mind's eye, we will see that good day. From the first morning stretch when you realize, "Oh..that did no cause me pain!". To the second when you feet touch the floor and you turn to look out of your window to see another beautiful day. You sit on the edge of your bed and take slow, deep, cleansing breathes, breathing in the knowledge that this is, indeed, going to be a good day.
From the soft warm water of your shower as it runs down your body, each ringlet of water bringing you renewed strength. After your shower, you lather yourself with emollients laden with sunscreen, of course, and cloth yourself in your favorite comfortable clothing. You are now prepared to take all that this wonderful day is going to offer you.
Shall you take a walk? Why not? It is a beautiful day and you are a part of it. Perhaps you will take a brief moment to be that island again, slip into the water for a short time...slip in, then slip out armed with the, "I DID IT" attitude. Go back to your place of safety and comfort and enjoy the peacefulness. Take a moment to give thanks for this beautiful day that you are a part of and that you were able to participate in!
Now, make your plans for the rest of your day and remember, it is a good day!

I see you in this good day and I know it is there, waiting for you. I see it and so it is!

Peace and Blessings

05-29-2008, 09:52 AM
I cried, I did..when I read your words, Saysusie.

Instead of wanting it all, waddling in my self pity I should create a smaller vision, a smaller scale like you suggested and slip into the water for a moment.

Thank you for bringing me back to the point...to focus on what is real. Today is real and not dwell on what was, whether it was yesterday's sun basking, traveling, eating...bring life to a smaller scale that I can manage without causing damage.

I am still learning. I still stumble. Sometimes I forget to live in the moment, each second before the next change take place.

I always say, if I have a good day, ask for another. If I don't have one today ask for one tomorrow. I think I need to ask for a moment, and remember that wonderful moment till the next one happens.

Dwelling on what was too long, I am probably missing many moments I could be enjoying...

Thank you for getting my thoughts churning again. Sometimes it just takes one seed, one word to get the flowers blooming, the mind to open the spirit up...

Deep breath, into my moments I go....

Hugs full of love,

05-29-2008, 10:10 AM
Hi Oluwa,
I too see you in your good day, the one you so desrve. One day at a time, one step forward at a time. You are strong enough and determined enough to do as needed to help yourself.

I too feel as if I haven't been here enough this past week either. I've been in a little slump myself. I'm so glad the biopsy was good. Also glad to see a game plan on to help your tummy. Your gastro doc sounds like a keeper. I too have longed so hard for the person I used to be, lots have I'm sure. What's inside is all that matters, you have the sunniest and warmest inside of anyone I've ever met. It warms me to see your replies and post. To see you hanging in there with your strength keeps mine going. Vent, scream, we're listening :D .

Just wanted to add that I sent wild child (the 4yr old boy) home today with his chart and said to never bring him back. He actually hit me and tried to scratch me for popping his hand, and said "stay still, I'm trying to scratch you". I had enough of him shoving my furniture around and throwing the toys. Didn't pick up anything or fix the furniture. I let his father see for himself. I was proud for standing my ground, but upset that there are kids like that the school is going to have to handle next year.

05-29-2008, 08:55 PM
Hi Cheryl...

I know, I noticed as I read a bit you have been away too. Coming up the slump or going down? I hope up and out. Need a boost?

Thank you for nice things you said about me..I think you are such a sweet compassionate, tender person...I hope you know that.

How could a parent even want to leave an uncontrollable child with anyone...maybe in hopes someone will straighten him out a bit. But what is one to do. He seems so incorrigble. Shame on the parents...he deserves better guidance from them..

Tomorrow is a new day, the opening of the weekend and I plan to start it just like Saysusie wrote. Try it too...see yourself in that good day too...

I'm making another attempt to sleep...sweet dreams..

Head hugs,

05-30-2008, 08:37 AM
Poor, sweet Oluwa. Gentle *hugs* to you. I hope today has found you in better spirits. I'm glad too that your tests came back at least a little better this time for the tummy. Hopefully the new meds will work and help. My oldest had the same problem with the "flap" that connects the tummy to the esophagus. His reflux was severe and even caused his oxygen level to drop. My youngest takes Miralax everday as well. It's not too bad he says.

I also hope the Lyrica is the miracle drug for you that my doctor said it is for some patients.

Sending good thoughts your way in hopes to chase away the blues.

05-30-2008, 09:34 AM
Hey DebbieE...

Thank you for the wishes and hugs...

How are your sons' digestion fairing now? What caused the oxygen level in his blood stream to lower...shallow breathing from the inflammation of acid?

Yep, it isn't bad..the Miralax has no taste, but for me it is filling. I wonder what causes the foaminess when mixing...maybe it is the sparkling water I use. Kind of like when adding Splenda to liquids.

Something I currently take, new or combined with the old dosing changed something within me. I feel like a rush running within me...humm. Or maybe it is because I stopped all the sedating, opiate drugs..

I think these drugs...Flexeril, Elavil, Lortab..Xanax... types are what sends me into a mental spiral downward. I hope Lyrica will be my wonder drug too..and can replace all those other mind doping, energy robbing tablets. I think I am very sensitive in the psychological/behavior side effects of them.

I am running about the house chasing the blues away. Clipped a few Magnolia branches and vased them, replace my tables linens and place mats with the summer yellow flower embroidered ones. Painted my toe nails with Hawaiian Orchid Pink...adding color to my day..

When we are unable to see the moment, we have to create one...I am.

Thank you again Saysusie, Cheryl, DebbieE..hugs.

05-30-2008, 11:49 AM
It may be the Reglan. It has "speed" like effect on many people. I, too, had that feeling when I took it. I am now on that drug that I get from Canada, and it does not make me "rush." I tended to have a little bit of shakiness, too. Definitely "woke me up." If you don't like the side effects of it, mention Domperidone to your GI guy - works the same as Reglan, but without the side effects. They don't prescribe it more often, because you have to get it in Canada (yes, I know that is one area YOU luck up, Sits - it is readily available to you, if you needed it).
Glad you are doing a little better. You are so strong to stay away from the scaryoids. I am terribly hooked. Can't avoid terrible flares when trying to wean.
We will be here, watching to see how you are doing. We will listen to the tears, grumps, or laugh with your humor. Whatever you give, we will gladly receive!!


05-30-2008, 12:17 PM

My Gastro only mentioned about tremors or shaking from the drugs...if, it occurs I am to see him immediately. It says swelling as a potential side effect, less urination..but actually I feel less swollen. Not puffy-eyed in the morning these last two AMs.

Maybe from the Miralax...still tapping my fingers waiting for a little water loo action..

I've had worse flairs without open toed heels, so I wonder is this a flair without garter straps...or FMS. Because my tendons and joints ache with stiffness, but I am still able to walk about.

I struggle mostly with my fingers, wrist, ankles, heels and soles...and when rising from sitting and my attempt to walk a few steps..I feel like my pelvis is thrusts forward, my knees slightly bent to carry the trunk weight till my hips are able to catch up and rotate. Like I have crappy pants.

I just have so many issues, in the same locale..it makes it hard to decipher what is what. Is it my Gerdie or is it IT in my chest. Is it DDD in my back or FMS. Is it GYN bloat and pain or GI bloat aches. Is the throat woes, lost voice from Gerdie or SS...

I could handle the woes better if my back would quit letting me know I have one daily. I still feel silly I left my spine appointment in haste, without patience. Maybe they could have fixed me...now it is the 23rd...sigh.

It seemed to take me forever how to spell quit above..I typed cwight. Humm, nope. Kwit, nope...cwit...cwight, nope. Crazy, what happens to our memory files. Finally it popped...quite! Oops not quite quite...it's quit. Silly me...

Enjoy..it is Friday...

05-30-2008, 04:11 PM

Hoping you crawled out of your slump and started the weekend early.

I'm doing alright....feeling pretty good, I must say. Hope you are too..


05-30-2008, 10:11 PM
Hello All. Hi Oluwa, trying to stay a step ahead of the slump. My laptop died after the 1 yr warranty expired and just got done paying off 2 mths ago. Was looked at and told internal problem, cheaper to get new one than pay to repair the problem. Hubby ordered a new one and got it running now.

My feet still hurt consantly and swell when sitting. Then crack when standing, but swelling goes down again after a few minutes of moving around. It causes a slight limp after sitting, but I can walk it off after a few minutes or so. It hurts to sit, and it hurts to stand or walk. Its one of the things that have caused my slump. Walking with my kids in the evening is one of my favorite past times, we do it 4-6 days a week. Went once this week :( .

I agree with you about the little boy with his anger problem. I'm not mad at him, I'm mad at the parents for lack of guidance for him. Yes, people actually expect me to fix their kids for them. They think my 2yr degree is for guidance of kids. I tell them its not, its a degree in "childcare management". It means I can run the buisness of taking care of kids, not counseling them. Oh well.

Have you been able to sleep? Tummy behaving for you? Can you notice anything with the Lyrica yet, or to soon? I know how you feel on the forgetting to spell, I do it every post at least once. I cheat and go to the google bar, start typing and words will pop up starting the way I spell and I scroll down and pick the word. It works most the time, as long as I start it right :) . I'll try to chat more laer, I hope to be able too :D .

05-31-2008, 01:14 AM
Hi cheryl

I've been where you are with your feet. 4 yrs ago I hopped out of bed and yikes :shock:

I felt like the bones in my feet where going to break with every step I took. My doctor had my feet Xrayed and turned out I have arthritis in my feet. So she sent me off to a foot specialist and had orthotics made for my shoes.

They took a bit of getting used to and I have to find shoes that weren't too ugly for words that I could put my orthotics in.

My feet no long hurt. I still get some swelling and there are times it's really bad, but that's from one of the medications I started to take about 2yrs ago for the arthritis in the rest of my body.

Are we having fun yet? Let me know when the fun starts cause I dont want to miss it :)

Any way if you dont already wear orthotics you may want to have a word with your doctor.

If you do wear them perhaps it's time for a new pair.

Hope this helps :)

05-31-2008, 06:11 AM
Morning to you Cheryl,

Crack of the feet. I refer to it as the potato crunch. Yea, mine does that too..wonder why. Do we need Glucosamine?

No PC, no walks for a week, that can put a tail spin on your spirit. Happy to know one of them is resolved.

Have you evaluated your eats for sodium? Are you taking any pills, like Mobic, Naproxen...prescription NSAIDs make me swell..hands and face too. Drinking enough fluids?

When I was at my Rheuma appointment Wednesday, they couldn't tap any veins in my arm...asking if my intake of fluids was low. I was because I waited over two hours and my bladder was full and no room for more. She attached a hose to to the top of my hand. Slowly it filled. My hand veins are bulbous, but it was slow like molasses that day.

I slept so hard, with wonderful dreams again...must be the Lyrica. Pain..maybe a little less...

Tummy...feels weird. Bloated from the Miralax. The Protonix doesn't seem to last the maximum like it use to, 12 hours..now it is like 7 hours. Hummm, do I want it to burn in the AM or PM meal? Maybe I need to make a call on Monday and see if I have to take another in the evening like I did before my endoscopy...

The Reglan...boy, there is a lot of action in my hopper now...on the move. It causes the stomach to contract and get rid of the food faster. I am hungry more often. Watch me grow. H.Pylori used to make me hungry too, but it gurgle and sloshed. Then some days it would make me satiety after a morsel...Glad that infection is gone...

Any plans for your weekend? How was the zoo..?

Tomorrow is my husband's birthday. On the agenda...I wrapped up a DVD player, found one and a MP3 player already downloaded with Jazz. Movie tickets certificate...Grilling Outdoors recipe book...brunch reservations...

If I can't get him to cook in the kitchen maybe outdoors...

Today, maybe help in the yard, the garage...sit under the umbrella with my feet in the pool.

I did 3 minutes on the tread. I feel fine. I wish my body felt like it did something instead of feeling like I have something, which we do.

Last year this time I felt so much better.. Each year IT seems to chip a bit more off of me...ugh.

For your feet, I just though they have a pedicure line and one of the products is a sooting lotion..has mint, eucalyptus..check it out, it is supposed to be refreshing and stimulating. Slather on the calves too. I just may get some today too.

I just did a quick Google..Dr. Scholl's has a product, OPI does...check it out..

I hope you enjoy your weekend...maybe an A/C chilled theater for a matinee? Ice cream cones from Sonic or DQ?

Happy day..hugs,

05-31-2008, 10:37 AM
Oh my.....such a struggle, Oluwa! I've been in and out again - missing you all and missing these important posts. Oluwa, you are endlessly brave and such a source of inspiration. So gentle and kind...not fair that you should be dealt with so unkindly! IT thinks it has you down for the count, and then you find the strength to get back up and take another step forward. I hope....pray....that each step forward feels like it's own little celebration. I love to hear all of the small thiings you do to make your world just a bit better....lovely ideas! Sounds like you and your docs have made progess on some fronts, but the puzzle continues to unfold. I hope the new meds make a real difference for you.

Saysusie your words seemed just right. Like so many posts here, they are meant for one, but have meaning for so many of us. Thank you for that.

Cheryl, I'm GLAD you gave the little monster the 'heave-ho'....too much....much-too-much! Just a shame someone in his home isn't taking charge of those problems. But you must be relieved that you don't have to be one to fight that battle.


05-31-2008, 11:30 PM
Hi Oluwa,

Ouch, I am sorry about the tummy. I have the Reglan on an emergency supply only when the Prilosec (one in the am and one in the pm) doesn't work.

I hate taking Reglan; I had shaky hands and tremors. Felt weird and kind of an out of the body feeling. Looked everything up and duh, it states some patients have the same effects with Reglen as Parkinsons. It explained the shaky hands and constant tremors. I try to avoid Reglan as much as possible; I don't feel good on it.

Is there any other med they could put you on? Could they increase the Protinix? That is what the doc did with the Prilosec. Grrrrr, my fingers aren't working with my brain tonight. Sorrry.

I hope you feel better soon.

Take care,


06-01-2008, 06:36 AM
Hey Jody,

Good morning...

I keep telling myself it is a path I was meant to walk...and I am trying to find a lesson that I need to learn, to take with me each day or how I am apart of the chain effect of life. How I, with this, fits into the links.

Maybe a silly belief...but I do believe it all fits...we all fit.

You have pretty hard go of it too. In and out because of IT, work? How are you fairing? Your hands, fingers? Voice recognition software yet. My monitor doesn't have a built in microphone...maybe because it the new type, HDMI TV monitor. I will have to buy one, or I may just have one in the electronic box in the attic...

Hey Faith,

Morning...how are you, this morning...still lost the mind to finger connection. I know what you mean. Is that from FMS? Do you have FMS too?

The shakes, the Gastro told me to stop and call him if that happens. I don't get the shakes, but I get a rush like euphoric.

But it is scary just thinking about what this drug can do and I am taking it...hummm. Scary stuff.

At first he did mention the second dose of Protonix during the follow-up, then changed his mind. Maybe Reglan and the second dose counter, cancel one another out. I didn't ask.

Thank you you two for thinking of me....today is my husbands birthday, so I am off to fill his day with celebration. He is connecting his DVD player now...

Happy Sunday....

06-01-2008, 07:01 AM
Thanks Sits, I figured arthritis was getting worse in my feet. Just didn't think arthritis could cause that much pain. To top it off, I caught my left pinky toe on the corner of the concrete slab and ripped it half way, ouch!! I get x-rays in july with new rhuemy, I guess I'll know exactly what then. I have insert support for my tennis shoes, I'll look at the ortho's too. I see you are looking for that fun train that zooms by now and then, gotta find me a ticket. Have you figured how to sneak aboard :lol: .

Hi Oluwa, wow you've been a busy girl. Happy birthday to your dear hubby. Sounds like today will be a good one for you. I would see if you take an evening pil, sounds as if you may need too. Feel wierd actually feeling hungry? I'm so glad you got some sleep, yeah!! We didn't go to zoo on Memorial weekend, the storms the night before caused maintenance problems at hubby's work. He's maintenance suprivisor of an old building, on call 24-7. We did go yesterday, took a friend too. It was fun. Walking wasn't to bad, everyone goes slow which helped. Took the wagon for lil miss, had a top and table to make the ride more enjoyable for her. Splurged and went to Cici's after. My feet behaved somewhat. I do drink more fluids now, and I've always ate a low salt diet do to bp problems that run in my family. I'll google that for my feet and check it out, thanks. Oh yeah, read somwhere somone said that God gives lupus to the strong ones because the weak just can't handle it. Guess He see's you as a strong one. I'm a firm believer that things happen for a reason. I do wish you didn't have IT, but if you didn't we've would have never met. You wouldn't be here for all of us who need you and so glad to know you. Like the saying I read but have no idea of the author: "to the world you may be one person, but to one person you may be the world". Hello my world, and how are you today?

Hi Jody, it is nice not dreading when he's coming. People need to learn to put their foot down and not be intimidated with their own kids or how they may react. He was causing more stress than I thought. I realized friday that I didn't wake with a tight chest, and was in a good mood.

Hi Faith, I'm so sorry those meds do that to you. No wonder you save them for emergencies. I took some meds that did that for 3wks for premature labor years ago, I know how you feel. Couldn't sign my name to anything, hard to eat and drink. So glad when they said to stop.

Thanks all for the replies. You sure know how to make a girl smile in a slump. All you guys are why my slumps never last long :D .

06-01-2008, 07:07 AM
Forgot, where do you buy compression socks? Do they help with the foot pain?

06-01-2008, 07:53 AM
Thanks for asking, Oluwa. Hands still hurting - some days worse than others. Hips and legs are a problem sometimes, too - keeps me awake at night if I don't take something to help me sleep. My tummy troubles come and go - but plagues me enough that I know something isn't right there. I see my internal med doc on Tuesday and maybe I'll get some answers - most likely just another referral, though. More "hurry up and wait." I'm getting sloppy about exercise again and that doesn't help at all. Got to get moving again - I know I feel better when I do - not so weak. At least I can walk outside a bit now - weather has turned and it's lovely!

06-01-2008, 08:29 AM
Hi Jody, sorry about your hands. I see you have a problem with hips and legs too. Does your hips pop? What do you do for relief?

06-01-2008, 06:24 PM
Hello, Cheryl....no, hips don't pop....just hurt like mad. I think bursitis, maybe? It's not the hip joint - my rheumy keeps checking that.

Overdid today - took a long walk with my hubby and forgot my hat (and sunscreen) Duh. :roll: Developed a migraine....super-sweats....heart pounding....face was on fire...nauseated. So stupid...why do we do these things to ourselves...

A bit better, but heading off to early bed. (big dummy......kicking myself....) :( :(

Hope you're doing well today, Cheryl!


06-01-2008, 07:25 PM
So sorry Jody that your good day gave you a bad evening. I think we just forget for the moment what may happen, and act like we are normal people. I get migrains from the sun light, and forgot to wear them today when outside in the pool with the kids. I went for a walk today too, me and the kids and the bad feet. It was great and worth it. Don't kick yourself, smile knowing you had a lovely walk with your hubby. Hope you feel better tomorrow, good night :D .

06-02-2008, 06:13 AM
Hi Cheryl,

And how are you?

You are so sweet. My world, I got a big ear to ear smile with a tightness in my throat...thank you. When I read you, I see and feel you that are so soft, kind hearted and filled with lots of love to give and you share all that with us..thank you...hugs..

We did toil in the yard, but not until 7PM. Sun was behind the trees, hat donned on my pinhead..and guess what I even mowed...woohoo. It felt good. It just seems weird to me at times, having a house, yard, cars and not upkeeping them like I use to.

It makes me feel like a guest in my home sometimes, well, a lot of the times.

Something is making me feel grand. Having rid myself of the other sedating, drowsy mood altering drugs and having Lyrica maybe a good change. And to add to it...I am finding a calmness probably because my husband isn't traveling this month., alleviating the lonesomeness.

They canceled his flights and he will be working at home..I think for this whole month. Woohoo...when he wakes up, had a few too many Margaritas last night we plan to go to the nursery.A nice gray thick cloudy day for that.

His birthday we enjoyed. Had seen Iron Man. I rather enjoyed the flick myself with my box of mini-Butterfingers. Gosh, small drinks are huge. Large must be a gallon!

I was still full two hours later from my mini bars..for the Reglan, while at dinner I just ate my salad, my husband woofed down the bread round, lobster and crab bake appetizer but we had room for two margaritas too. So, I too was glowing. We are light weights, inebriated easily. Our dinners were boxed. Looks like shrimp, lobster and beef filets for our lunch today. I do enjoy a cold baked spud..

Glad your feet let you do the walking to enjoy the zoo. I don't think there is a zoo here...maybe a serpent, reptile only somewhere...

I read CoQ10 lowers BP...an idea...

I will call my Gastro Wednesday, a week of dosing and see about adding that extra Protonix...and I am sure the salt lick margarita wasn't much help. But my tummy feels better than it was..a plus for me.

It feels sooooo good to have the normal hungry and full feeling. It is wonderful having my gage back when I remember to take my Reglan....

What a difference a day can make....


Morning...Hip, legs, hands...what are you doing without any workable limbs. Ouch...

My hips hurt, or did hurt too. In the butt cheek and at the FMS pressure points. I said did because something change since changing my pills. Can they work that fast? I am not doing the crappy pants walk this morning...

My legs inside ached a little last night, but I fell right to sleep. Probably from an insufficient amount of liquids yesterday and the dehydrating Margaritas..no spasms though.

Maybe do the 5 minute walk like I am doing. Not the loooong walks. I'm not aching from it thus far. I know what you mean, why do we do these things to ourselves?#@! Feeling swell and rested today I hope. Hats, sunscreen our outdoor equipment..I forget too.

My thoughts churned from Saysusie's post..small, frame it small. Overdoing, not doing cause more damage than good. Wondering where she is as of late..humm..

Tummy aches are awful, eh? That really does affect one mentally. I know. It is just as bad as chronic pain. The constant gnawing, and nagging. Have you been tested for H. Pylori? I believe my doctor said about 30% of Americans have it and maybe the only cause of ulcers. It is diagnose through a blood test and also a breath test. I did the breath.

Have you had an upper GI yet?

When we have so many things going wrong at once it is hard to begin to fix them. Me, I am doing one at a time. Gut, spine then endrometruim lining. Oh, I decided to start dosing with the Prometrium again and will seek out another GYN at the end of this month...one at a time to weed out the villains.

Work day for you two? Ugh..I feel bad, because I can just lay around whenever. I am thankful I can, but I feel empathy because I know everyone hurts and are not as fortunate as me today...

Hope this day, your bodies will not make themselves known...and you can enjoy all of it or some...be kind to yourselves too.

Let's be conscientious of our day and take in what you can..I am...one moment at a time...

Hugs filled with love,

06-02-2008, 07:23 AM
Morning Oluwa, how's your day? Glad I made you smile and feel good, I ment every word :D .

I only have one day-care kid again, and he's at school. So it's quiet for the day, this is the last week of school before summer break. Hard to believe my oldest will be going to high school :shock: . I hope he has a better experience than I did. I'm trying to talk him into the track team, he's always been the fastest runner in his class for years. His father was the same way, but never went on a team. Trying to explain how that can pay for college, but he's 14. Not interested in even thinking that far, but I still try without pushing.

I'm so glad the meds are helping. Your day sounds as if it went well, yeah!! Glad you were able to mow, thats my favorite chore. My mp3 and off I go, this year I've only been able to cut once. I was cutting once last year, and the vibration caused two joints to slip slightly out of socket. Lots of pain to staighten and slip back in. Kind of quit cutting so much since. It takes longer to get things done around here too it seems. I'm glad that you have your hubby home with you for awhile. All smiles for that I'm sure.

By the way, what's CoQ10? I would love to know, thanks. The walk and zoo was fun. Feet are at an easier pain to deal with and the face pain is at a very low dull feel.

Hi Jody, feel better today? The walk didn't over do it? Hope your pain is at ease today. Also, may your tummy give you a break and not cause you pain either.

06-02-2008, 07:45 AM
Hey you, Cheryl...

Morning, I know you meant it and I did too..hugs.

Coenzyme Q10..aka...CoQ10. Another name is ubiquinone. It is produced by our body and is necessary for the basic functioning of cells. An energizer...some prescriptions and diseases decrease the production of CoQ10 in our bodies.

My Rheuma prescribed it for fatigue. You can buy it over the counter, but for tax purchase ask for a prescription. CVS has buy one get one free sale. $29.00 for a 100 of 25mg. I take 200mg. So for 50 days $29.00.

Here is an informative website I just googled, speaks of BP


I was just powder my face in my activity room, I call it..where my PC is. I get ready in there. My space..where I spend my days. TV, big huge round swivel chair. I feel like a teenage sometimes. Holed up in my room.

Sometimes when my husband yells up..I say back..I'm busy..I'm busy.

But where was I. I was here and just popped in..will chat up later...

SEe how I go off on a tangent..can you imagine how I talk in person...here there..

Enjoy your day..I'm off to get more plants...

I can't believe I feel this good...thank you Dear God, thank you.


06-02-2008, 11:12 AM
I'm so happy you are feeling so good. Thanks for the link, I'll check it out. I wonder off in words and walk. Hubby says I drive him crazy sometimes. I get easily side tracked in talking and walking. I told him that I was doing my wifely duties of driving your hubbies nuts :lol: . He just rolls his eyes at me :roll: .

Chat more later. Love for plants too? My hubby calls it my one true obssession :) .

06-02-2008, 03:56 PM
Oluwa, it was such a pick-me-up to hear you say you're feeling 'grand'! Yippee! No one deserves it more than you, Sweet Lady! I wonder what it is? I hope it lasts and lasts. I think you're very smart to tackle the problems one at a time. It can be so overwhelming to think about them all at once, can't it?

The birthday celebration sounds like fun...I'm so anxious to see Iron Man - I love those kind of movies! You must be very glad to have your husband home that long. My husband didn't travel much in his job, but he worked wickedly long hours and then would come home and often worked in the evening until long after I was in bed; weekends, too. Still, he was here most evenings. I like some alone time, but I know it would be hard for me to be alone a lot. You are a brave and tolerant wife to cope with that.

I had a rough night last night - took a Lortab and a Flexeril, but still couldn't sleep - pain, restlessness, general 'yuckiness.' This morning I had the migraine headache hangover (and the dull-headedness I always get from Lortab.) Husband took me into work and picked me up - nice to not drive when I feel like that. I should've stayed home, but big grants are due end of the week...just had to go in. Pain is better tonight. I have to keep it in perspective - reading posts here; going to my local support group - both have taught me how much worse things could be. I'm thankful for that, and my heart goes out to those who deal with so much more.

I see my internal med doc tomorrow - we'll talk about tummy issues, mostly, I'm sure.

Cheryl, your world will never be the same....one in high school!! Wow! I thought high school just flew by for our boys. I hope your son will go out for track. Our boys participated in lots of sports, and it was so much fun to watch them. I was like you, though - high school was NOT my best experience. I did fine in school, but I was so painfully shy I just didn't enjoy it very much. I've never been to a class reunion - not a memory I want to relive! :(


06-02-2008, 06:28 PM
I am glad I can be a pick me up. You guys do it for me all the time...


You are welcome for the link, find anything interesting there? Next time your husband rolls his eyes, say..Let me poke them out since you are not using them properly. When I first met my husband, he used to do that often. More out of habit and not an insult look.

I asked him not too, took many attempts, but he stopped years ago...

I find it a bit disrespectful. His culture..I really don't know what they thought of it.

When he says obsession, say compassion and with nothing more...

Today we went to Middleton Plantation again and pick up a Coral Rose Camelia, and a reddish pink pedals with white tippped Camelia too.

More Jasmine from a corner market nursery that was having 50% off to make room for the fruits and vegetable.. We will use it to cover the aluminum fencing, black wrought iron look alike. And a Jubice, Rubice, Aubice...??? Something ubice..I think? Good heavens. Anyways it is variegated and the leaves could almost be waxy...


A rough night...I am so sorry. Those hurt mentally too. Do you have Restless Leg Syndrome. I do, but I haven't had to take the pills for it for months. I think I may have once.

Those Lortab and Flexeril I gave up. Toys too much with my mind. Dull, irritable, sad. I get the psychological/behavior side effects. Did my body good, but not my mind. I am very happy for you, your husband is there. I don't mean his presence, but to be there for you..with support, with love.

I hope tonight is a better, much better night for you.

My husband is finding life is good when we always help one another. We don't have much experience at being married, we are working on our sixth year, I think...and I am learning too.

Not wanting to brave, nor am I really that tolerant. I bucked, but it is something I can not change. It is defeating, deflating for him and me to talk about it. It is what it is..till we relocate. And for now, I need to stay put and get my health under control.

Next time..a resale home.

Many people attend your local support group? What is it like? Socializing and/or engaging in the disease lingo? Like about shortcuts, regime and etc?

Oh, I the tummy issue, since I lot of the times I don't remember what I write. I write like I talk, so times I reread. Error...my H. Pylori test was a blood test and was confirmed it was gone when I had my Upper GI. To confirm it is gone, it is done either through a breath test or stoolie sample. My husband did the stoolie...

I hope and pray your Internist has good things to say, a wellness plan. Aches in the gut can cause ruts in the mind.

Sleep well you two...

06-02-2008, 07:37 PM
Hi Oluwa, the flowers sound lovely. Hubby calls it obssession and laughs because I get at least 1 plant a week, mainly little ones, telling myself "no, I don't need too" :D . We have yellow jasmines on a section of fence, was there when moved in almost 12 years ago and they smell good. Hubby likes to be a smarty-pats, he rolls his eyes in attemp to irratate me. I just stick my tongue out and walk off, he chuckles. We've been married for 15 years now. We planted an azelea today, one with miny blooms. Got a patio tomato plant last week. I love growing plants and veggies too, we have 6 pepper plants. Hubby has his own homemade hot sauce we sell, everyone loves it. I actually got my tomato plants last year to grow between 7-9 ft tall. Fish and clay dirt are family tricks I was taught.

Hi Jody, good luck with your doc app. tomorrow. I hope everything goes well. Sorry your meds were rough on you. I'm afraid of pain pills because of that feeling in the head. I was shy in school too. Picked on alot, poor and shabby clothes. I'm in the middle of 10 kids, by the time some of the clothes got to me they were in rough shape. I was a bit taller than my 2 older sisters, so the clothes were always to short. High school can be a nightmare for some. Thankfully my son has a good attitude, doesn't really care. He used to get tempers, but pulled one of dad's old tricks and cured it somewhat. When he gets his attitude, I put him to work with yard tools or a mop or dishes. Works good for him like it did for me :lol: . I'm glad you have a support group, I'm to shy to go to one :oops: .

Good night all, over worked the feet. Time to prop up and take some aspirin.

06-03-2008, 08:48 AM
Hey Cheryl..

The flowers will be lovely indeed from the description the lady gave me...

Tomatoes...I tried, wasn't very good at growing the only one. Got many tomatoes for us..but this year we past. I do have a lemon tree, a blueberry bush. No berries yet, maybe not will come...

My brother makes tomato juice, snappy and spicy. His trick he said was water, water and water...juicy and not hollow and dry like some of the tomatoes you purchase...

Someone told me about fish fertilizer while in Seattle. I remember purchasing it and using it, but on what..hummm..Dead head..

I love homemade tomato hot sauce....I bet it is extra special with your own vegetables...yummy..I am hungry, again. I think I am fattening up. I felt quite large yesterday. I felt like a little pig balancing on my hooves (heels).

Have you made an appointment for your license? Just wondering...I hope you can get over your anxiety...

What do you do when school is out...do you close your day care, or have drop offs?

So, how ya feeling inside and out....sunny, hazy, light blue or blue...pain, painful, painless, or deadening pain?

Did the prop and aspirin work?


06-03-2008, 03:52 PM
Hi! Doctor's appointment today (internal med doc). Did blood tests today; tummy ultrasound and some kind of pelvic exam tomorrow. Just got to rule out what it's NOT I guess. I won't have results for a day or two.

Slept last night - took yet another Ambien...wish I didn't have to do that.

Hubby gone for a couple of days, so I'll probably be a total couch potatoe tonight, eat comfort food (what little I feel like eating lately) and watch the tube.

Hope you are all well!

Cheryl, how are the feet? I admire anyone who grows things! I'm just not very good at that. We have some things growing, and my husband has become very good at taking care of the (better than me, that's for sure.) The homemade hot sauce sounds wonderful!

Oluwa, how's life treating you this fine day? I would love to see your flowers. I love flowers - my mother was a wonderful gardener. My brother is the only one who inherited her green thumb. He has wonderful flowers and loves to plan gardens. How's the pain? Your back? Tummy? Hope all is well for you.


06-03-2008, 10:13 PM
This is what my Mrs. Birdy is....


06-04-2008, 08:15 AM
Hi Oluwa and Jody.

A wren, love the little things. They are so cute. I use sugar water for my tomatoes when they start turning yellow. Makes them juicy and sweet. I've bought the fish fertilizer before, its ok. I use fresh or frozen fish (live near lakes), you put it in near base over roots. Keeps the plants fed and cool. Our peppers are given little water to stress the heat, then given lots of water when they are almost ready to get juicy. Its a trick I learned so not to need lots of peppers to make the sauce. We grew up with gardens and animals, a mini-farm as I used to call it. I got a bell pepper plant to now, my first time trying one.

My feet are still causing daily problems. Able to do my morning exercises at least. My left won't ease up. A little worried may have hurt it good. I was soaking my feet in the tub while my daughter played in her bath a month ago. She stood up, told her to sit. She slipped and her knee landed on top of my foot causing a small bruise. She laughed, so how could I be mad. For almost 2, she's 34lbs and 34 1/2 inches tall. So it was a bit of weight to handle.

I do keep the day-care going all year round except weekends and holidays. My kids like the company since I don't let them leave much. I tend to be over-pertective at times, but try to let them go 1-2 times a week to a friend who's close by. I haven't had a chance to do the driving test yet. Still scared though, trying not to think to hard about it.

I feel so bad you two have such tummy trouble. I love to cook and eat, wouldn't know how to handle myself. I hope you two are feeling good today.

06-04-2008, 02:52 PM
Hi, all. Had pelvic ultrasound today. I would most definitely NOT recommend this... :cry: :evil: Guess he's trying to determine if I have any abnormalities that might cause the pain. Technician was pretty clear that there was nothing unusual (which is good) but that still leaves me in the dark (which is bad.) No info on the blood tests yet. So, wait and see........

Hands hurt like the devil today - it's 44 degrees and very damp, and I had to do a lot of computer work to finish a grant today - worked 7 hours. That's a loonnggg day for me. :(

Home now, feet up, trying to get warm. What month is this? March? October? Can't POSSIBLY be June. :mad:

Cheryl, sorry your foot is still sore. Sometimes those kind of injuries bruise way down deep and take a long time to heal. (Can't get mad at the little one, though!) Hope it's nothing serious.


06-04-2008, 06:27 PM
Never could get mad, especially when they smile :D . Pelvic ultra-sound, yikes :shock: . Glad it was good, but sorry no answers. Hopefully your blood work will be good too, but maybe help shine some light. Frustrating, glad news is good-but upset it gives no answers. Sorry about your hands, the pain is just unreal at times. Amazing at what we deal with, wether we want to or not. I think we are all a lot stronger than we give ourselves credit for. About the foot, thats what I was wondering. Just could not gather the right words in my mind. I figured if I described how, someone may fill the words back in my head for me. I've bruised a bone before and this is kind of what it felt like. Thanks for putting my words togther for me, it was driving me nuts :lol: .

Wow, 44 degrees. 94 degrees here in FL, we let the kids cool down in the pool. Looked so inviting, so we joined them :D .

06-04-2008, 06:57 PM
Cheryl, the warm temps sound sooooo nice. I don't know what to hope for - I get so chilled-to-the-bone in this damp, cool air (and winter is even worse - dry cold...go figure.) But, too much heat makes me kind of sick too. Sheesh! Hawaii was really perfect for me - not too hot, not too humid...just too expensive!!! :shock:

I broke my foot nearly two years ago now. The top of my foot is STILL bruised from that same fall, and still tender. Ortho doc said bruised bone can last for a very, very long time. Hope your foot pain doesn't last that long!


06-05-2008, 05:34 AM
Good morning all. Thanks for the concern Jody, your so sweet. About 6-7yrs ago I was in a car accident, not to bad thankfully, and bruised both shin bones. It took 2-3mths to heal, hoping too it doesn't take too long. Your weather sounds nice to me, although the cold and damp can be painful. The weather here is mostly humid, so it always feels hotter than it is. Like yesterday, 94 but real-feel was 101 I think. Always feels like a heating blanket when you go out. Thats's why I wish I could afford to live on the beach coast, always feels good. We stay in during 10am-2pm, the hottest and worse part of the day.

Let us know when you get your blood work back. I do hope its good, but at the same time I hope it gives an answer. Does that make since? I don't want anything wrong with you, but I know there has to be something in order to get an answer. Have a good day, said a little prayer for your hands to give you a break. Chat more later with all :) .

06-05-2008, 06:06 AM
Hey you guys...

Forty four degrees.. :shock: I know, what is up with the north being so cold in June. My family in Seattle and Da Up say the same. They are getting frustrated...and I, like you Cheryl is basking in 94 degrees.

Swam yesterday, cleaned the tile grout in the pool with a baseball cap and .a T-shirt to protect my shoulders. My hands are looking like golden brown gloves from working outside this past week.

Someone mentioned Aveda Sun Source in a post, a self tanner. Wish I remembered so I could thank them..gee I could do a search..later.

Arrived yesterday, I slathered some on my milk white calves. I noticed a color up..they don't look like two carrots either. Another thin layer this AM.....waiting the results...

Yesterday I was so chilled, no temp though 98.2 or since mine has been low..humm must be my high. I shut the upstairs A/C off and my husband came up saying it is like a sauna up here. I was in my PJ's with a Hoodie on...hood up.

Ouch broken foot, bruised shins..My top of my foot is something too. I banged it on something? Probably the rock of the rocker or perhaps something in the garage, about two three weeks ago and it still hurts. And of course now I bang it on the rockers everyday. It feel like I cracked the bone...must be severely bruised. It was bruised at first..now it is just a rotten spot. Looks like there is a water puddle under my skin in that spot. Whaddaya think? Ice?

Pelvic Ultrasound....the gadget is even scary to see. I went, all that?*#@!? :shock: That tool is what diagnose my thick lining, fibroids and cyst. Still working on ridding myself of them through Prometrium.

Gosh, I've been up only an hour and I need a nap already. I slept 9 hours, can you believe 9 hours. I woke once at 7 when the phone rang...and fell off for another hour....

I'm off to lalaland...over n out...


06-05-2008, 10:03 AM
For self tanners I use Jergens Natural Glow, slowly tans. They have one for your face too. Takes a week for full color effect. When in a hurry for an occassion I use their excelerator, works over-night with coloring and full effect in 3 days. They have one for light skin tones and one for medium skin tones. I get lots of compliments on my "pretty" tan, I love it :D .

06-05-2008, 10:09 AM

Never tried Jergens..does it have dimethicone. My body, not me doesn't like dimethicone..

So how has you day been.? Still sweltering in the mid 90's. Here too. I'll take a dip in a couple of hours...

Didn't take my nap..moving kind of slow...


06-05-2008, 07:31 PM
Cheryl: Thank you for the prayers....so nice to know! No results from any tests yet - I don't think my doc will contact me until he has all the results, which could be next week? I wish they would have an answer - but don't want anything to be wrong...what you said makes perfect sense!

As cold as it has been here, I'm not sure I'd want 94 degrees and high humidity...my Northern body would probably melt!

Oluwa: So you've had the pelvic ultrasound experience? Not good, not good....but it IS good that they found what needed to be taken care of, huh? I don't think mine revealed anything of importance. We'll see what the blood tests show...

Not so cold here today, but raining and windy. Warmer tomorrow; warmer still by Saturday - but rain expected until next week. Can't have it all, I guess.

I heard on television just yesterday that Good Housekeeping tested self tanners and the one that did the best job (of the gradual tanners) was Nivea Sun Kissed. I don't recall which of the instant tanners was the best, but I'll bet you could find it on Good Housekeeping's website.
I used something before I went to Hawaii, but it was a little orange-y I thought. I may try the Nivea stuff (assuming it ever warms up enough to expose my legs!)

Hands just awful - both of them tonight - can't quite straighten out my fingers and the knuckles are red and swollen. Grrrrrr If it's not one annoying thing, it's another. :roll:

Tomorrow will be a better day.....

Sleep well, all!


06-06-2008, 07:19 AM
Hi Oluwa, sorry to say that it included that ingredient. There are other brands like Nutragena and Nivea. Maybe one of those won't have it. I'll look this weekend when I run to the store. I hope you got some sleep. Feeling better today? I hope so.

Hi Jody, your welcome. I have painful hands too, so I understand all to well. I'll be waiting with you for the blood results. Let us know please :) .

06-06-2008, 08:02 AM
Hey Cheryl,

Thank you for checking on the ingredient. The Aveda seems good thus far though.

Yea, I don't know why I was so chilled for a few days..this morning it seems to have passed. Maybe swimming had something to do with my internal thermostat. Woke up this morning with fish eyes..swollen.

Back...not so good. Instead of swimming on my back, doing the back stroke, I was on my belly floating and kicking on my husbands float and we chatted about...I suppose from stretching my head up like turtle pulled my thoracic vertebrates. I may just have to take an narco pill even if they make my digestion slow down. The several Tylenol did nadda...

Mentally I feel good...and you?

Whats on you agenda this weekend? Us, seeing if the plant nurseries have anything new to offer...

Mrs. Birdie's eggs still haven't cracked. It reads 12 -16 days. I believe today is 16th day. Then they fledge for about two weeks. Did you know the female Carolina Wren doesn't sing..only the male...


Yes, I was probed with the wand. I have to mentally tune the procedure out with idle chatter. The technician mentioned what she found but not in detail...that came with a phone call after the doctor read the probe results...

Aren't those little things, but big hurts like a nag. Always traveling about our bodies cause a pain here, then there. It helps if I fold my hands and squeeze tight...

Hope the pain it way somewhere outside of the body and today is a better day....

Maybe your summer will stretch into the fall when it decides to start...


06-06-2008, 09:22 AM
Hi Oluwa, doing just that on the float (or floor) will do it. I forget once in a while and do that on the floor with the kids. With the amount of pain it can cause, you'd think I would remember. I have a small curve in lower and upper back. Scoliosis runs in the family, I only have a mild form. Lucky me, most the females in my family have moderate to severe. If you need something, then take it. No need to suffer if you can help it.

For the wren, doesn't it seem the males in most species are the ones with the beautiful voices and feathers? Animals and plants always fascinate me. Always reading about them. Mallard ducks were always my favorite birds, I've owned a few in childhood. Love how loyal they are to their mates.

As for the weekend, suppose to go to the beach. I can't believe hubby's still wanting to do things. My "mr. couch potatoe" is being active :shock: . I thought that was only for work :lol: . Also today is last day of school for 2 1/2 months, yikes :lol: .

Mentally I've been a basket case, everything is making me mad again. I want to scream for the littlest thing. Who is this person, can't be me. I was the one with all the patience, maybe that part of me is still in there. Got me a shovel and flash light to go digging for the patient part of me. Gotta a stun gun for the meany part of me, ssshhhhh-don't let her know :lol: . Now I think I do sound like a basket case :D , well this time I'm fighting for my patience. Don't want to be a depressed meany, thats not a fun person to be around. On the up side, the lady who had to quit bringing her kids due to the car accident and losing her job stopped by yesterday. She starts a new job next month, and her 3 girls want to come back. Made me feel good, she said her and her girls didn't want anyone else. They said they all missed me :D . That has put me in a real good mood. I treat everyone's kids as if they are mine. Hugs and kisses for all, guess it pays off. Chat more later.

06-06-2008, 09:23 AM
Sorry I haven't been posting. Busy, busy busy. Got a new kitten and you know how they can be. She's running on my couch right now trying to attack her tail.

Thank you for asking about my son. He's doing much better now. The pediactric GI said they didn't know exactly why severe reflux will cause a sudden drop in the oxygen level, just that it does. Every once in awhile he still gets it, but it usually only happens when he gets stressed now or over eats on his favorite mashed potatoes and white gravy.

I had an amnio with him because I got a postive Downs test on my prenatal bloodwork. While he did not have Downs he has what is called balanced translocation of cells. His 6 and 12 chromosones (sp) split in half and switched places. While no information was lost, it was jumbled. They told me he would probably have some health issues as a result, but they couldn't say what as they didn't know what parts of his body was affected.

Now he is having problems with his knees. They are swelling and having lots of knee pain. He missed 3 days of school this year because he couldn't walk. Ortho at first said it was just really bad growing pains. That he's growing so fast his tendons aren't stretching quickly enough and that's what it causing it. On the recheck though he said his knee cap is actually slipping in and out of place and mentioned possible juvi RA, but is treating him for now that his muscles are just too weak to hold his knee cap in place. I find that hard to believe though since he rides his bike almost constantly. Unfortuantly he's got a double whammie as I have IT, my grandfather had RA, and my mother-in-law is pre-lupus with RA. Only time will tell.

I hope everyone's weekend is pain free and joyous!

06-06-2008, 11:02 AM
Wow, that does sound like a double-whammie. I do hope he has no problems and is able to have a good summer. It's so much harder for a child than an adult it seems. We understand why we can't do things, they don't always do. My boys live on their bikes, sounds as if yours does too.

06-06-2008, 12:35 PM
Hi Debbie...

I was thinking maybe with the burning in our chest we breathe shallow and not enough oxygen oxygenates the blood...maybe I am reaching.

When my joints first started to flair without a lace hankerchief it was in my toes, then my knees. I went to the Othro and I was diagnosed with arthritis, but there was no visible inflammation in the joint. It just hurt. From my understanding as I read more about IT, it is called arthralgia..

When IT is active the synovium, a thin membrane that line joint spaces grows and thickens as part of the inflammation response. It is common with RA but less frequent and less severe with IT...maybe this?

Have you read The Lupus Book By Daniel Wallace Third Edition...he has a chapter on why the aches. Should be available at the library...and later purchase it if it fits into your needs. I refer to mine often...

At a time last year I was seeing a PT after my surgery. I mentioned my knees hurting from IT..she felt..she said my knee caps weren't in the tracks. Your knee cap is shaped like, ah..a flat spinning top. The point fits between the bones. Mine wasn't..it was off track...she taped, literally my caps in place and it did make a difference too.

My knees have always cracked and ripped but without pain, probably from the misalignment until IT started wreaking havoc on me and filled me up with pain. My body reads F..full. I've reached my quota...

A surrounding knee muscle exercise...
Sit, feet on floor and lift leg slowly and slowly lower. If having the feet on the floor is to hard, a strain, place heel on a shoe box, something of that height , leg straight out and have him lift..see if that will build the muscle. Bike riding feel like it lifts and strengthens other muscle groups....buttocks, thighs and calves. The knee gets a free ride as it is being held up by the pedal it seems...

Another, while sitting, leg bent... still bent raise the leg up using the thigh from the seat of the chair.

IT is hard on adults, I can only imagine what a child feels..and too being a parent and seeing your child in so much pain. Feeling helpless...

Overeating, something we love is hard to learn , hey too much causes pain. Even as an adult the pain doesn't scare me away from my favorites all the time...

A new kitten...cuuute. Ah I remember when my was a little ball of fur, fit in my hand..now she is a big ball of fur, huge and fills my lap. 17 pounder..all belly not legs or head..

Enjoy, it's the weekend...Hope you two can...

Be well I wish...

06-06-2008, 12:47 PM

Oh, no...is it the pain pills making you feel mad. Mine does that. I did pop one and my body thanked me. My husband didn't because I have already displayed a bout of irritabilty, so I am hiding upstairs.

Weird skipping along, then ...g-r-r-r-rr--r.

Maybe Daddy can take everyone to the beach and you stay home..or just curl up on your own spot on the beach and take a nap with Little Missy...

Sometimes we just need to ask people to be patient with us for a day when we are out of them. I try to say I am not feeling my best today..I just need a bit of space to be. I even say that to my animals because it is like I am their world..room to room. I move they move, I sit, they lay. Always at my heels. Endearing most of the days, but every once in a while. I feel like pulling my hair out...

Just run out in your back yard and scream. Afterwards rub your hands together like you're dusting off dirt..gain your composer, take a deep breath...now how do you feel?

Hope you enjoy your weekend....and I can read/see why they would want to be at Cheryl..you're a great Mommy...big heart filled with love...


06-06-2008, 04:46 PM

I feel for you and I'm sorry that you are suffering so from this awful scourge called Lupus.

06-07-2008, 01:49 PM

Thank you for you caring words.... I feel I am fairing pretty good considering what IT can be capable of doing. My woes to me seem small...

It affects my emotions and spirit the most that is what is big for me. I then have a pity party and/or crack up and I am good to go for a few weeks stretch.

I have to that that now and then..crack you. Weep to Him... I can't endure it, He hears my cries and my prayers are answered and tomorrow is indeed a better day. Through self help, my IT family or modern medicine....my prayers had been answered.

I've never asked to take the disease away, or ask... why me... I just ask for endurance or a break...

I feel it was a path I was meant to follow. Maybe He is waiting for me to ask for complete recovery..hummmm.

In the good to go phase...wheeheeee...

06-07-2008, 02:58 PM
Hi Oluwa, how are you? Good I hope. Pain pills don't cause my mood swings. I only had 2 that was given, don't have anymore. Didn't care for them too much. They eased the pain, but made my head fuzzy. Stressed out again and just not handling it well.

We didn't go to the beach, hubby was to tired and wanted to veg this weekend. He doesn't take the kids anywhere wihout me, says he can't handle them alone. They are always with me at all times, ecept when I let my boys visit there friends down the road. My daughter is always with me. My mum-in-law only takes the boys once in a while. She won't watch them until they're 5, says young ones are to stressful. Most of the time she's to busy with patients or friends. My mom's alway at one of my sister's for one crises or another, or too busy with some of the other grandkids. Says she'll try, when she has more time. Been saying that since my 14yr old was 2.

To add to the misery, my front tooth is hurting from an exposed nerve :cry: , I don't know how much more I can take. I have no dental ins. and can't find a place that'll let me make payments. The other front tooth is broken, so hate to talk or smile. My tummy's all upset, and with the tooth I can't eat. I'm hungry, but don'want to eat. Having to drink everything with a straw. Just want to curl up today and hide and cry. Of course hubby decided today he wanted to get some supplies he needed from home depot. The cards in my name so I had to go. Now he wants to do the outdoor project tomorrow. Thought he wanted to veg? Aggrivated :x . Oh well. Chat some more tonight.

06-07-2008, 08:30 PM
Hi cheryl. Try Capitalone.com. Go to the health section. They make dental arrangements. That's how I paid to get my teeth fixed.

06-08-2008, 01:08 PM
Oh DebbieE, Thank You. I applied and got excepted!!! Gave me a list of dentists in my area that excepted it and I chose the one I wanted. I had no idea it was that easy. The pain is getting to much to handle. My front tooth broke 6 months ago, kind of won't go anywhere because of it. Now all I have to do is find someone to run the daycare on app. days. Thanks for helping me, I'll be able to smile again :D . My nephew is getting married next month, hopefully get it done in time.

06-08-2008, 04:44 PM
Hey Cheryl...

I'm a day late...still need a bit of cheer up? Tummy still hurt?

I am so glad Debbie was able to help you with your dental. Not feeling healthy, then throw a front broken tooth into the mixed...sigh. And to not to smile...hugs...

Have you tried rubbing pure clove oil on the gum surrounding the tooth...

If I could I would come run your daycare for you....If I could I would swing by and take you out and about.

Sorry your weekend plans petered out.

I know we all have different relationship with our families...some tight, some estrange, some so-so. Can you tell your Mum how it makes you feel not being there for you, her grandchildren? Would she tolerate that well?

Are you the oldest?

Can you tell your husband how you feel when he breaks plans with the family and is able to work on another project?

Did he work on it today or did he veg?

I think if you appy for your license you won't feel so bad...this way if he changes up, you can go without him...

Was today a good day? I hope so...


Pretti in Pink
06-08-2008, 05:45 PM

I hope you're doing better today and I am so glad you looked into Debbie's recommendation and were approved. It seemed like with just the knowing that you were accepted made you feel a little better. Also, I too hope you can have some progress made before the wedding because I understand being self conscious, especially when it comes to teeth.

06-08-2008, 08:52 PM
Thank you pretti in pink, sweet of you to ask and say. I really hope they can in time.

Hi Oluwa, hubby did end up doing the outdoor project. Took him 6 hours start to finish to build a roof cover thing over the pool. He loves making things. Once he plants a seed in his head, he wants to do it right a way. So sore and tired from holding boards up all day and I didn't even help but off and on. Boy, I'm sure not the person I used to be. The pool water does feel nice and cool at the end of the day, I like that. Both my boys passed, yeah!! My 8yr old passed with A-B honor roll average, we are so poud. My 14yr old did really well, so proud. He hates school, so glad he applied himself and tried. Well, time to rest. Mouth acting up again too and body complaining.

06-09-2008, 07:27 AM
Hi Cheryl...

When is your next appointment with the RheumBA?

That is great you boys did well, I hope they are proud of themselves too as there mother is...

Last night I had a rough sleep, but when I did doze off it was good sleep. After 2 1/2 Flexerils and 4 Lortabs. Not all at once. My joints were flaming, my soles of my feet were burning. Probably from swimming and workin gin the yard...

Funny it didn't hurt so intensely till I crawled into bed...woke up feeling fine. A bit fuzzy from the remnants of the capsules and tablets in me. Feels like it is going to be an airhead of a day for me..d'oh.

Mrs. Birdies eggs hatch. I had seen three newborns thus far. They looked like raw breakfast sausages. Then yesterday they started to get a bit of fuzz....my excitement.

Another hot day in the Carolinas...over the weekend at our house 102.


06-09-2008, 07:55 AM
Hi Oluwa, I bet they're so cute!! We had about same temps. So sore, jaws hurt, feet hurt a lot and upset tummy. My app. is July 14. Waiting for dentist office to call to arrange first app. and discuss payment options. There web page stated that a card doesn't have to be used, if qualify I can do payments thru them for no interest. I hope I qualify, if not the card will be here from the place Debbie recommeneded (once again, thank you). My boys are happy, my daughter has her toy mic pretending to sing right now. Wish you could see, so cute. Shaking her hips and mumbling, hard to believe she'll be 2 next month.
Well, back to cleaning. Mondays are always the worse, so much to catch up from weekend. Ta-Ta for now.

06-09-2008, 10:09 AM
Cheryl....Oh they are so cute...today I made a little video of them. Both Mum and Daddy birdie must care for them because two birds were in there. Scared me..not knowing this.

I had seen the first one take flight..tiptoed to the nest. Stood on the step ladder, peeked in and I seen huge movement. Scared me, before my brain registered it is just a bird. I wish my brain registered it was a bird before I fell, before my camera landed on the cement floor, before my husband ran his rib cage into the garage refrigerator handle trying to catch me. Bet we look like Oliver and Stan...

We all survive the spill, camera too. A small dent in it's case. No black and blue marks yet...

Did you try clove oil on your tooth..or the OTC stuff, anbesol? Try giving your feet a massage..with some nice creamy lotion to get the blood flowing. When I squeeze mine it helps....like squeeze with the palm and not the fingers...

She sounds adorable...I bet she is...

That is great you are able to finance your dental care. I try to find and post information for those who aren't able to afford health care when they speak of little or no income. There is always something, some program, financial aid somewhere. We can't be to proud to ask for help. Happy to know help is on it's way...

I feel like a snail from all those tablets..still in a slight fog from the residue. Pinhead...

Enjoy the aft..

06-09-2008, 07:13 PM
Hey Oluwa, glad you and hubby (and camera) came out ok. So cute I'm sure.
Forgot about the oil, I'll write it down. Long day, didn't think it would end. Lil miss is still awake though, fell asleep late and now still going. Relaxed in the pool, water nice and cool. I even managed to mow the grass, yeah. Tired now, but feel good that I did my favorite chore. Love to take my mp3 with me as well, makes it more enjoyable. I didn't shake the finger joints loose either, so glad for that. How did your day go? Got birdies on your mind all day? Sleep well tonight, that I've prayed for you to have. I said a prayer for everyone to sleep well :) , rest and sleep all. Everyone deserves a good night sleep.

06-10-2008, 08:00 AM
Hi ya Cheryl...

I've been enjoying the wrinkled water logged skin lately too. Floating about, kicking my feet, looking at the day turning into night. Listening to lawn mowers, children laughing....as I smell the grills, imagining their menu... ribs, chicken...smoked fish, grilled corm. It has been good days..days that mentally block the pain for me too..

The night's sleep turned me out once, rolled over to swallow a Lortab. Funny you mentioned the birdies, not by day but they were in my dreams. The dream was they were all wardrobeless and the next day they were in fur coats looking more like a cat with a beak...weird...

It is great you are out of your slump..it does feel great doing the things we enjoyed. Especially when we don't have to pay for it with pain...

It's going to be another lovely day in the south. Hope you are having fun in it..


06-10-2008, 07:50 PM
Hi Oluwa, its been a long day. The storms we had were harsh and full of lightening. We had to power down (cut off a/c, lights, and tv's and such). The lightening was striking all around us and only 50+ feet away. Powering down is a trick I learned to keep lightening from striking the house, it has hit power boxes and I've lost some electronics. Lightening is so attracted to water and power supplies, I always shut the a/c off first. My hole yard was flooded, the pool was overflowing like a mini water fall. Visibility was 10 ft at times. The kids handled it so well. Played foose ball and legos. Had my mp3 plyer on the mini speakers turned all the way up. It lasted an hour, but no one noticed when it was over. Spent the evening gathering kiddie toys and talking to the pets to make them feel better. They love the garage, pure concrete.

How did your day go? Oh yeah, dentist office called. I go in thursday for x-rays. So fast! The 2 screenings and an x-ray, then chat with dentist will be $296. Glad for the new card. I have the print-out of conf. # they said to bring. Even told me how to print out info sheet from their web site, so I can fill and save 30 minutes. Nagged my mother to watch the kids. She played a guilt trip, but $20 and telling her I'll call my mum-in-law and I'm sure she'd do it for free helped. She doesn't know that she has to work that day, it won't hurt her. She does it for free with my other siblings, so she'll get over it :) . I hope your day went well :D .

06-11-2008, 04:05 PM
Hey Cheryl V.

How goes it? No storm this way, and it seems none are brewing..hot, mid nineties..

Me...just being a domestic technician...

My days...swimming, digging holes, dropping a plant in. Latest additions...Day Lilies, Dahlia, variety of grasses, more ground cover...moss between our pavers...Coneflower. Mainly perinnuals.

I was out and about at 6AM...tossing grass seed, tied up my vines....while the house snoozed.

Then piled in the car and hit Lowe's and Home Depot... more plants, more junk...wheel barrow hanger, shelving goodies for the garage....

Stuff has been sitting for a year, waiting on me. I am handy but not manly. My husband is manly, but not handy. I wear the tool hip belt and he still is looking for the buckle. He is a quick learner, but grumbles. I would rather it be the other way around....

We have hired contractors before but the workmanship has been workmanshit. Can I say that?

We had hire a landscaper, mower man...on the 4th week, two weeks ago he never showed up, not a call ..zip..it is just as well he wasn't very good...and my husband was traveling, so I didn't fuss. Fussing complaining requires too much of me, too much of my time...I know to expect that kind of work down here, half heartedly..a lick and a promise. Learned from having a house built, never again...

I think that is what cause the biggest flair without a purple dyed mink coat about 18 months ago. I haven't recovered from that one. But as of late, seems like I am on my way...

Despite the arms, shoulder, finger and feet pain...that is small potatoes compared to what it has or could be... So, really no complaints. I have to modify my swim workout. Saysusie gave me a great tip. I implemented it today..no aggravation there.

My husband order fins, short ones, Saysusie recommended... Goodness, it will feel good to get a work out, without hurting. Get the heart pumping, the blood flowing, a happy rush ...endorphins are healing...yes...Calgon take me away...

Since I had an early start this AM..I think I will have an early bed this PM...

Night, night...sweet dreams...
Chat in the next light.

06-11-2008, 04:35 PM
CHERYL: So good to hear that you are able to get your dental work done. What a great piece of advice that was! Dental pain is like foot pain.....when your teeth hurt, everything hurts. I wish I could see you smile after the work is done!! :)

Congrats on both boys doing well in school! I know that must feel great!

Sounds like a awful storm....lightening is so scary. My parents lived in an area in Southern Wisconsin that had spectacular summer thunderstroms with crazy lightening. I really didn't like being there when those storms blew in.

Storms here, too, Cheryl - but not lightening....just SO much rain. Another 2-4 inches coming. Fields are flooded; creeks are overflowing their banks; there have been streets washed away. And we haven't seen anything like the flooding they have south of here.

How are you feeling today, Cheryl?

OLUWA: Hi! Wow...so glad you didn't hurt yourself falling (and hubby didn't get hurt trying to catch you!) I'll bet the little birdies were so special to see. We had some nests under our deck, but we never saw birds there. I have some plant stands on my deck with those cocoa liners - the chickadees have been pulling at the liner for nesting material. It's such fun to watch them!

How is life treating you these days? Still blazing hot there? I've watched the temperatures out there and thought of you and your swimming pool. Hope you've been able to enjoy it.

How's the tummy? The back? Aches and pains staying away?

Cold and rainy here - that's hard on my hands and my leg. My knuckles were swollen and red today; my fingers were bruised. I keep plugging away at work but sometimes I just wish I could stay home. Not sure what I'd do with myself, though.

Tummy still a mess - just makes me cranky and tired. (That's why I haven't posted much.) No results from my doctor yet. I guess I'm going to have to call him. It's been a week now - just want some direction...where do I go from here? I've lost a fair amount of weight - not a bad thing, but not exactly the recommended way to lose it, I guess!

Hope all are doing well!


06-11-2008, 04:46 PM
Hugs Jody,

Sorry you're feeling so carpy

Hugs to ya. Glad you posted, let us know how you're making out.

Has you doctor said what they think may be causing the tummy troubles?

06-11-2008, 05:17 PM
Hey, SITC. Nothing from my doc yet - thanks for asking. I promised myself I'd call him on Friday if I haven't heard anything yet. Maybe I'll call tomorrow, then he'll have a chance to call me back. I feel like a cranky old person! :x


06-12-2008, 05:28 PM
Hi Oluwa and Jody. My new laptop was cutting off on me and the curser flying wild. Had to exchange after only a few weeks. Hubby had to start setup all over again, likes to put so much on it that it takes half a day. Oh well, had to be done.
Went to dentist and found out how much it'll cost, somewhere around $5,800.00. :shock: The monthly payments will be $100.00 a month, and aproval rate for me was $4,500.00. So we'll have to figure the rest out later, I wanted to cry :( . To top it off, I have to wait 2wks to get relief for tooth pain. Hubby can't get off 2 days in a row, and had no sitter. I set up the next few months app., praying I can find a sitter. My mom cost me $20 (I didn't really have to give) and a big box of food. Normally I wouldn't complain, but she doesn't charge my other siblings for baby-sitting :x . To top it off, she was lowsey, took kids out once (good), then watched her soaps. Put my daugher (almost 2) in her room with the gate and a sippy cup that didn't work. The boys and my day-care kid played video games with door shut, so they didn't notice. Then all she did was tell me how bad she was, took money and food and left. To top it off, she brought my sis and her 2 kids (21 and 7). Let the 21yr old on my desktop all day and let the 7yr old do what he wanted, why my sis slept all day. Sorry to go on like that, upset my own mother would do that to my kids.
How was it today for everyone, hope it went good.

06-13-2008, 07:23 AM

Hey you..Jody..cranky young girl..

Stomach problems does wear on a person. It affects your whole physical being...I know how you feel. I hope it has eased up a bit...

Have the results come in? Did you call?

When my hopper was at its worse..I sipped first warm 7-Up then someone mentioned Coke...both worked for me with a few low sodium no fat soda crackers.. Plain rice with a bit of butter...

What's next...Maybe suggest an Upper GI..

My tummy... is much, much better...I would describe it as being just tired. It doesn't burn and the pain is barely there now, only when food passes it by....

My back.... I've been protecting it. No hunching over the kitchen sink, sleeping on my back, swimming on my back...neutral spin when on my knees in the dirt. I purchased one of those knee outdoor pads. So, it has been behaving with its usual aches, but not screaming...Ten days till my appointment...


For the nerve pain...try the clove oil or pop a pain pill, anbesol?

Gee, I don't know what to say about your Mum. Unfair. I would be upset too. Have you asked her why the disparity?

I am happy that soon you will have your smile back.

Mrs Birdie flew the coop and took her Chiclets with her or something ate them. Three days old gone. I wondered did I contaminate the nest with my humanly scent..but from research it says that is a myth.

Wondering who and what ate them. I don't believe they could have relocated them..too heavy. Surely they couldn't fly the coop because their wings look like our grocer wings....featherless...hummm.

I slept for almost two days...the mattress became my PJ's...left only once for a feeding and a few trips to the loo, but from that night, the early night on the 11th...I woke up...36 hours later.

I have this rash, allover my hands, half way up my fingers... The rash is hard little bumps. Oh about 40 can fill up a space about the size of a dime...humm. I was so weak, still am.... was exhausted...lethargic for those 36 hours. Even my scalp burns and if I may borrow from who said so cute like, my girly hair...burns too. Still. No irritation noted, no red, just burns and itches. Hummm...I feel cruddy.

It is already 87 outside. I think I will tend to my indoor chores today..maybe dip this evening...feels like it is going to be a slow moving train today.. .

Off to scratch...Toodles..

06-13-2008, 09:14 AM
Hi Oluwa, poor birdies. Maybe by luck she moved them out for more light and air? Wow, 36 hours. Must be why your body feels so inflamed. Tummy ok after long time of no food?

Hi Jody, still no results? Call, ease your mind. Poor you with your tummy. I use milk and crackers, helps at times.

06-13-2008, 09:30 AM

There was no evidence of a massacre in the nest or on the floor. I don't think a bird relocates their blind young from my research. I feel just awful...I did make a video of them. I just can't imagine what would have eaten them...

Belly feels fine..I grazed once. Actually I don't feel so inflamed. I think the rest did my body good. I knew I was fizzling...the day before, aches, chills. Now, I just itch..

Are you feeling good...things okay?


06-13-2008, 11:19 AM
Hi Oluwa. Sorry about birdies. It sounds like you slept whatever it was out of you. Sometimes you can work it out, others sleep it out.

Today so-so. Mood better. One of the guys(20 next month, they grow so fast!) I used to baby-sit said he do it for me. He has from time to time. Sweet kid, said I can pay when I can and to give dates and he'll take the day off from work. He only lives 3 blocks away too. Wow, how did I get lucky. Body sore and tooth bad. Don't know what is causing the pain this time. Hubby working over-time, so I'm going to curl up and read that book I'm trying to squeeze in when I can.

Hey Jody, any word yet on blood work?

06-13-2008, 12:21 PM
Hi Cheryl...

I am glad that worry is off your back of finding someone to care for your children, and not having to rely on Mum.

I am sorry things are like that for you...if I was nearer I would be there. Sometimes we just need a break, even from our children. Not that I have any experience, I know from when my sister's twins were babies...even now when they are in their teens. When I vacationed in the UP I would take them to the hotel or cottage I rented for the night or weekend...

Maybe the stress of it all is aggravating the pain, mental woes magnifies the pain. Maybe the rest and the read will tame the beast a bit I hope...

Keep tight, find a comfy spot and enjoy the rest of the day..

06-13-2008, 12:48 PM
Thanks, stressed over money, pain and a good sitter can wear you down. I love all these kids, but nerve racking they can be. Plus feet STILL hurt. Hard to keep up with them lately. Didn't even do tredmil yesterday or today. You sound like a good auntie. Kids need time away from parents (non-school related) as well as parents from the kids. I know you'd help if you could, you have one of the biggest hearts I know. Wish I could help you too at times. May your evening go well too :D .

06-13-2008, 03:57 PM
Hi ladies,
I hope Im not butting in on a conversation, but I wanted to maybe suggest something, Cheryl. First off, hats off to you for taking care of such young kids while you are sick. I bet youre a great mom. You know, have you tried calling down to the local middle or high school and posting an ad on the bulliten board? Or at the local YMCA or something. I bet there are alot of girls who would love to come and watch your kids. You could have her come over a couple of times while you are there, and see if she is a good fit. Then you could try leaving her alone for an hour or so to start, and gradually move upward. My friends and I have done that many times, and oftentimes, they start at like 13, and remain your sitter all through school. Obviously, you could talk to her parents first, etc. I know our local YMCA has babysitting courses for young girls, and they take it very seriously.
Im sorry that you cant really depend on your Mom, thats a bummer, but more common than you think. I have alot of friends who dont even bother asking their moms. They get the "Ive already raised my kids" -type response. I am fortunate - my parents live next door and they adore their grandkids. As a matter of fact, its Friday night, so my son and his Nani and Papa always spend the night together. They do McDonalds or pizza and watch a movie, etc. Like I said, though, I am very lucky. You really should be able to take a break from your kids once in a while. I would hve gone crazy had I not worked nights when they were small. I looked at it as time to myself!!
Anyway - I have been posting like a maniac today. I started to feel lousy again, so Im just chilling out on the computer. You guys probably think Im obnoxious!! I hope everyone has a wonderful evening - Im so jealous of all of you with the built-in pools!! Although, I live about 100 ft. from the Atlantic Ocean - so I shouldnt really complain, right?
Love and prayers to all -

06-13-2008, 04:22 PM
Hi Lauri, don't mind if you join in. Everyone's welcome to butt in. Sitters are hard to find. All mine grew up. I know the routine on breaking one in, done it a few times. Do it myself for new small kids for my day-care I run at home. The kids and parents have to hang here for at least an hour. It does help. You are lucky. My mom watches other grandkids, not mine. Just not enough drama here I guess like my siblings homes. Trouble also is, putting a flyer up looks funny with my day-care signs. People get confused.

Love to chat, the others here in this post are great. Glad you joined in the conversation :D .

06-13-2008, 04:27 PM
Oh yeah, I have a regular pool from wal-mart. 4' high and 15' wide, $300. In august they go on sale for $159. They are plenty enough :D .

06-14-2008, 06:47 PM
Hi, Cheryl....I'm sorry the tooth repair is going to take so much cash and that you have to wait a while to start. And the whole thing with your mom....oh, wow, that would've made me feel so badly. You absolutely, DO need a regular sitter you can rely on. Everyone needs a break.

We had our granddaughter and a friend on a little outing overnight and had a good time. We watch her a lot - but we only have the one granddaughter, so I suppose that's simpler. Still....seems so unfair that your mom 'plays favorites.' But, we all know that life is anything but fair....otherwise, why would be all be sick, right? Hugs to you, Sweetie...

Oluwa, I'm sorry you've had a bad time - the rash, the tiredness, the general 'yuckies'.... and I'm sorry the birdies 'flew the coop.' Many things could've eaten them I guess...I don't know much about 'bird relocation' - but it could happen. How are you feeling today...better I hope.

I DID have some news from my doctor. Blood tests all within normal range. He wanted me to stay off Prilosec for 2 weeks to see if that helped. I made it a bit over a week and had to go back on it. I was in such misery from the pressure and pain - maybe I have GERDIE??? Next he wants me to stop my colchicine, but I just don't want to do that until I talk to my rheumatologist. That's the drug that finally helped with the constant cycle of pericarditis. Maybe it's fine to stop it now, but I'm just a little nervous about it.

My PCP thinks I may have a simple case of IBS. It's so common - although it usually shows up in younger women than me. (But, hey, so does lupus and I wasn't diagnosed with IT until 2 years ago!)

He wants me to check in with him in a month with a progress report. In the meantime, I'm just going to pursue the IBS thing and try to figure out what foods may be triggering it. It's also triggered by stress....gee...THAT'S a surprise!! What isn't!?!? :roll:

So, I'm hangin. in there. Thanks for asking about me!

Hope all are doing well out there!!!!


06-14-2008, 10:47 PM
HI Oluwa & Cheryl,

I have been MIA for a while and checking in.

Oluwa: Reglan is very scarry. I was told I can't take Prilosec in the am and then take Reglan at night if it is really bad (Gerd). I asked for the 2nd dosage of Prilosec in the evening and it seems to help. I save the Reglan for emergencies only; I have IT.

Thank you for your kind thoughts and sympathy. I couldn't imagine being pregnant and feeling that icky and sick! I feel for you!!! I hope your feet are doing much better.

Take care,

Faith 8)

06-14-2008, 11:26 PM

I am sorry to hear about your teeth; that is a fear that I ahve also since I have Sjogrens. I get the responsefrom my parents "I raised my kids and we are enjoying retirement." Not much help there! When I do ask them, I feel guilty and imposing.

I haven't been checking in; too much stress lately along with IT, Sjogrens, Diabtes, high blood pressure, Gerd, and fun FIbro. Economy is slow and my hubby's company is laying off employees every week. He has been given a 55 day notice. I am frantically trying to get all my meds refilled, etc, in between constantly seeing doctors.

More labs and a week later, and I am now Antiphospholipid (spell?) positive. The day prior to the dr's appnt, had head rush and thought I was going to pass out. Rhuemy wants me to see a neurologist so I better get it scheduled prior to huby being let go. He has been with the company for almost 20 years; it's heartbreaking.

Our insurance is through his employment, etc. We both know that he will not get another job with the same pay rate that he is currently at due to length of service. It's frustrating with 2 children and I only work limited part time due to IT.

I am sorry if I sound like I am complaining; don't mean to sound like it. I am very frustrated, worried, etc. Negativity is not helpful. I continue to pray, and pray. God is good and will always provide for us. Fibro is kicking in; took Vicodin and then Soma to break the pain. Put me in la la land since I took it together; though feeling beter.

I hope everyone is doing well. Things could be much worse.

Take care,


06-15-2008, 05:30 AM
Hi Faith...

Come let it out...don't stay away, don't despair. Sometimes just writing about it, we can find the answers within ourselves, we can find a calm....

Head hug.... you have so much happening and more too soon to come. If there is a solution to the problem, it can be fixed..if you see none..let it go..and breathe.

The Lord will provide, sometimes we have to look a bit to find it, in ourselves, in others..in other places...the answer is there..

In my prayers you are...Hugs.

06-15-2008, 09:00 AM
HI Oluwa,

Thank you for your prayers and kind words. I think we need a lot of prayers. There is nepitisim in my hubby's area at work; adult child works for manager. I think manager has been told to let people go. Do you think he is going to let his son go with a new child?

I am trying to find a calm; just don't know where to look besides praying. Thank you for the head hugs. I am praying the solution can be fixed as someone doesn't get 19 years of positive reviews and then one awful on their 20th. It doesn't make any sense.

I keep telling myself the Lord will provide; though I am still scared of losing everything. We have really struggled the last 2 years due to my down-sized hours and high amount of meds and expenses. This has added stress to my hubby.

I am continuing to look . . . . I believe in God . . . He doesn't give us more than we can handle right??? I must be a very strong person. God only knows the path; and we are not to question it.

Thank you for all your prayers . . . . we need each and every one of them. Head hugs to you Oluwa. I needed that. I am off to church to get renewed and for more prayer. I hope everone is doing well and may your day be filled with many blessings.

God Bless,


06-15-2008, 10:15 AM
Dear Faith,
I am somewhat new here, my name is Lauri. I can completely empathize with your situation. I also have had to stop work due to this illness, and my husband has been the only income we have. He was laid off for almost a year a couple years back, and his unemployment ran out as well. We became so behind that we have yet to truly catch up. This past year, he was laid off a couple months, and I tried to do the right thing and call the mortgage company right away. Well they literally took 9 months to determine a repayment plan for us, thus we were then 10 months behind on mortgage (they will not let you send any payments wihile they are determining a repayment plan). I had to leave my job AGAIN during that time, and we are now in preforeclosure.
Financial stress, Ihave to say, tops most any type of stress. Wondering how your going to make it week by week is almost unbearable. I so feel for you right now. What I have discovered, though, is that GOD does come through. Once, when we were about in foreclosure before (my last bad flare), I got a phone call out of the blue from my Dad, who offered us a $15,000 loan. I didnt ask him for it, he just knew and offered it to us. We pay the loan every month for him, and were able to keep our house. THere have been many other instances where I had simply lost hope, and out-of-the-blue - something happeded that saved us. I work hard on a daily basis to keep the "everything will be OK" attitude - because it always works out. Having faith is so difficult at times, I know. Hang in there - God will see you through this. My prayers are with you also.

06-15-2008, 07:54 PM
Hello all. How was everyones weekend? Good I hope. To Lauri, thanks for the prayers and sharing your experience for Faith. I have said a prayer for you too. I hope it gets better for you as well Faith, I've said a prayer for your hardship to go away. I do hope it gets better for you.

Dear Oluwa, how are you? You have been on my mind this weekend. You are always so kind to me with comforting words, even when not feeling well yourself. I have felt so crappy lately, I hadn't asked or said much comforting words your way. Now all weekend, I've thought of you and wanted to repay your kindness. So how are you doing my dear? Forgive me please for my selfish pity.

06-15-2008, 07:54 PM
Faith, I'm so sorry you're facing such a load of stress....new physical problems; financial problems....all so much stress. I pray that your faith will shore you up - give you hope - lead you to answers. Please keep us posted on what happens.

Lauri, I hated to hear you may lose your house. The agency I work for is one of the leading foreclosure prevention counseling providers in our state (we've been doing it for 14 years.) With the housing crisis, and the federal funding that's now followed, foreclosure prevention counseling is available all over the country. Did I read correctly - you live in Massachusetts? Here is a resource you might want to check out: http://www.massresources.org/pages.cfm?contentID=7&pageID=2&subpages=yes&dynamicID=843 I hope you can find some relief, Lauri.


06-15-2008, 08:52 PM
Hi Lauri & welcome,

Thank you for your kind thoughts and words. This disease robs us all of almost everything we have. I can hear your empathy and compassion and I know you understand.

I hate this disease and all the auto-immunes that come along with it. I remind myself everyday that I am stronger for all of this as I am sure you along with everyone on this board are stronger for it too.

Two plus years ago my husband took over the lawns, pool, and we lately cancelled the pest control service. All the little things we take for granted, I admit I took it for granted prior to this illness. Instead of hitting the grocery store or Samsclub 2x per month, it's once a month for necessities only. Meds increased; I tried to pay for some and put many on a credit card. Even though I am on mostly generics, half of my hubby's check every month goes towards insurance, monthly copays, labs, and meds. It is really depressing; and I am sure I am not the only one experiencing this!! God is good, and you are right, good things do happen. I am patiently waiting and praying.

It's hard to keep the "everything will be ok" attitude; I am really trying. I am glad that your Dad was able to loan you the money to keep your house. God provided!! Were you able to keep it? I am very concerned since you said you were in preforeclosure. I sincerely hope you have your home; it is very scarry to think of not having your own home. This Fall will be 11 years in our home; and my heart breaks for what you have gone through. I can only imagine; and it scares me too much. You are very brave!! Many times the price of this illness is too high to pay. It is not fair to us, our spouses or loved ones.

Thank you for your prayers, kind words and compassion!!

God Bless,


06-15-2008, 08:56 PM
Hi Cheryl & Jody,

Thank you both for the kind words, compassion and prayers. I truly believe in faith and prayer.

How are you both doing? Jody, thank you for sharing about the foreclosure prevention counseling with Lauri. I truly hope she still has her home.

God Bless,


06-16-2008, 06:10 AM
Good morning all. How is everyone? Thanks Jody for your info for Lauri as well. I wrote that down as well for some friends and family, forclosure prevention sounds like what they need. They go these new big mobile homes put on their lands, after everything tact on the payments are higher than they can afford. They're fighting to stay afloat and getting behind. Hope this helps everyone. I googled and got listings for our area. Glad you mentioned it.

06-16-2008, 07:13 AM
Oh Cheryl..

Thank you for thinking of me...

Don't say that...You are not selfish at all. I have pity parties too...me, me, me...and it is okay...

Has crappy been replaced with happy, yet?

I am doing fine...my fine. Nothing screaming at me in my body demanding I care for it now. Just the usual moan and groans. Achy fingers, wrists, shoulders, back...tossed with the yawnies. Feeling like a slug.

Rashed hands and fingers..weird. The are about the size of a pinhead with a clear dot in the middle. Oh, about 40 in a space the size of a dime. Doesn't itch...

Today I woke to spasms in my right leg. My sciatica from my surgery...I drank plenty of liquids, maybe I slept wrong. It didn't require much attention. Just a Oh, no... Ow, ow, ow and I rolled over and fell back asleep...

My dog, isn't well.. She is a bit lopsided. Vestibular Disease maybe from my research. I have an appointment a 4PM this day for her. She staggers, topples...falls, does sommersaults. Imbalance either in here inner ear or a brain lesion. It makes me sad, but she isn't in any pain. She is just her happy jovial self..still tailing me, from room to room..trying to.

My husband flew to Boston this AM, will return on Friday. This time by dinnertime instead of the usual Cinderella turning into a pumpkin time.

And that is my woe list...

My yippee list.

Tummy is on the mend. Digestive system is working.... That is a big wooohooo.

I figured out why my body hair is thinning. I wear clothes all the time, head to toe. Friction, rubbing. No summertime sleeveless or shorts..Like how men have that bald spot on their calves...the pant leg rubbing. Okay, maybe I am reaching...

And today while I am out I am going to get a Wendy's Swirly Strawberry Shake...

How's that for a great Mundane (Monday)...

How has your morning been thus far...did you get yourself some Anbesol?

The family?

Enjoying the pool on our cool nights?


06-16-2008, 07:55 AM

You're welcome...

I wish I had the answers for you, why people are not fair. I suppose they find a reason in their conscious to justify there actions..laying your husband off and not the one, the son with less seniority.

Sometimes it is just that way, it isn't what you know, but who you know...

Is it a unionized company? Your husband should talk to someone, who wrote the review, saying how it will affect his future jobs. Shame on people for taking the cowards way out and creating a scenario that doesn't exist to keep a company afloat..g-r-r-rr-

I know there are many financial state and government programs out there that can help. Would you like me to research them for you. California surely has plenty of them. Never be too proud to ask for help...even Jesus asked for water on the cross. I thirst. John 19:28

I don't know your finances but there are so many ways to downsize...till this passes...maybe you are already downsized out....take a look again. Cable, cell phones, lunches out, off brands...ATM fees. E-bill with your bank instead of stamps.. Sounds bleak, awful..like not living, but just to get you over this hump till a new day comes...

You can ask God why? You can ask God anything? You can ask him for a different path...sometimes the path is to show humility, to find greatness...to show you are resilient, you can endure. Never meant to break a spirit, but to stand, feel him when weak.. when you feel there is nothing left. Sometimes when we reach that point, our faith, the spirit is felt through and through. An overwhelming vulnerable joy.

He will guide through..., through your heart, through answers within yourself, to be resourceful, guide you to a person, to a program, to give you the sense of well being to regain control to make you feel whole again is my belief.... It always works out...maybe not the exact way I would like, but it does.

Calmness through prayer is wonderful...through the congregation, through meditation...just taking in our world, through sight, sound and touch..just to be in the moment...and breathe, breathe deep...and give yourself a day just not worry about the finances. Shelf it for a moment...go for a walk, make cookies...turn up the radio...sing...

You will, your family will find your way...

Another Oluwa head hug for you...squeeze.
Love, Oluwa

06-16-2008, 08:16 AM
Jody, Jody...

I am getting lost in the posts...playing Ketchup.

Well, that is good all in normal range, but IBS..not. Humm. When you say your tummy is icky, is it burning, belching up acid, hiccups? Loosy or constipation?

Could it be coffee?
Could it be too much fiber?
Could it be an ulcer from the NSAIDS and etc?
Have you had an upper endoscopy yet and a lower?

Have you read this about colchicine...
Vomiting, diarrhea, and nausea may occur with colchicine therapy, especially when maximal doses are necessary for a therapeutic effect. To avoid more serious toxicity, the drug should be discontinued when these symptoms appear, regardless of whether or not joint pain has been relieved.


Colchicine should not be used by a person with a known hypersensitivity to the drug, or by a patient with serious gastrointestinal, renal, hepatic, or cardiac disorders...

* upset stomach
* vomiting
* diarrhea
* fever
* severe rash
* difficulty breathing
* seizures
* unusual bleeding or bruising
* blood in the urine or stool

But... then I found this.....
The Australian biotechnology company Giaconda has developed a combination therapy to treat constipation-predominant irritable bowel syndrome which combines colchicine with the anti-inflammatory drug olsalazine.

My time isn't bad at all..just a little skin crud...feeling like a slug, but that is my usual life. I can put a grin on it or a frown..today I am wearing a smile..

Happy Monday...

06-16-2008, 09:07 AM
Hi Oluwa, glad your doing good. Maybe the rash is from the moth balls you mentioned? Some people I know can't get anywhere near them, or a rash. Don't know if it itches them, never mentioned it.

My Monday is the usual, plus kids home. Dishes and laundry piling over. Every room needing a good cleaning. Plus had company saturday night and let them and their kids in pool. Being the kind hostess, I cleaned all their messes for them as usual. Now tired and paying for it.

Like you just the usual aches in the joints. Tired though, daughter woke at 10pm and stayed up until 1:30am. Then had to get up at 5:10 to let day care kid in and back up at 7:30am for my kids. They all woke lil miss up at 8am. Woke so tired and ready to puke. Been drinking my soy milk all morning, it helps. Had myself a quick mental break down, yelled and then cried. Felt horrible for acting that way, spoiled all the kids with cookies and cool-aid. Good kids, they forgive so easily. Wish I had something good to say, but maybe that'll be later.

Keeping my head up and thinking how lucky I am. Some of you have stress far worse than me, and I can't help but feel guilty for dwelling on myself at times. Praying for you all, and smiling for the sake of you all as well. You are all in my heart and prayers :D .

06-16-2008, 09:36 AM

From what I know in my heart from Saysusie..this site was created to heal the heart, heal the mind, heal the spirit..to feel safe, to be understood..

Not just a site about IT, but a day in the life with IT. Our day..and today is a crappy day for you and too for some others and you know what..that is okay..

Not every day is a holiday. Shoot the government only gives us 12 or is it 13 legal holidays. Sometimes we have to make our own holiday or cry in our day. Both are just fine, in the end they both make us feel good, I believe...

Being tired magnifies our woes...soon the work day will be over, leave the dishes or have the older children pitch in and do them. Sort the clothes, set the water and soap and have the children fold and hang them. School vacation doesn't mean a vacation from life in the home..which includes chores...

Sometimes we just have to tell them you can't do it today and Mommy needs help. And asking for help doesn't make you a bad Mommy it is a Mommy that shows her children, to help out of love, to not run yourself in the ground, to share in the life of living life and how to be independent....

You know it maybe the mothballs, because I did touch a few of them, tossed them behind the back of their fence..hummm...thanks for the thought...

You forgot to mention someone special and very important in your prayers..you. You are in mine. This rough patch will pass, Cheryl...

Tummy causes a lot of mental anguish, a sour tummy shows on our face, in our skin tone..in our gestures. I know from experience..maybe you need to see the doctor. Call...okay.

Head hugs,

06-16-2008, 11:00 AM
Thanks Oluwa for your kind words. I know some days are worse than others, just can't stand being moody and dare say depressed feeling again. I love my oldest son dearly, but soon to be 15 and fights everthing I say. Give a chore, stomps and screams all I do is make him work. Get on to him for his mouth or something he's done and I'm ruining everything (blah, blah,blah :roll: ). Everyone for years have sent there teens here for me to straighten out for them because they can't. Now that I have my own, I think I'm just tapped out thats all. I wasn't ill or in constant pain with he other kids, and the energy needed is not there as much.

I do think Saysusie and Conrad in my prayers for this site. I would be a basket case by now I'm sure. They and everyone here has helped in feelings and knowledge so much. I m a bit stronger in spirit than I use to be. I keep my mental flash light and shovel near by at all times. Gotta be able to dig myself out from these moods :lol: .

Break downs have never really been my thing, so new to handling it. I've always prided being the strong one, mentally and physically. I've been ill and/or in pain for 5yrs now, thought I'd be use to it by now. Guess you never do. I took to reading my novel every chance I get. Always was my favorite pass time, it helps a lot. Its helping a little today. Also have no meds for pain, just my bp meds. Fixing teeth may clash with some of the meds. Have to talk to new rhuemy with the sheet from dentist on what meds will be used. That way not to take something that'll clash. Might call primary doc since dentist is 2wks away. Hubby says its probably the dealing with constant pain and lack of sleep getting to me. I'm sure thats all it is, does make since. Right now, no steroids while dental work is going on and they have me booked for 2mths of work :shock: . One day every week, yikes :lol: .

See, moods better now that I've vented some. Thanks for the ears :D .

06-17-2008, 05:38 AM
Hey Cheryl....

Sun shining in Florida..I sent you a PM...

Depression causes increased pain too, I am hoping your spirit has lifted a bit today. It hard making our own sunshine. Sometimes we have to be determined to make some.

Pain, lack of sleep depression...which came first as it is a vicious circle when one starts...Maybe talking more about your feeling will help the merry-go-around stop so you can get off.

Also maybe change up something in your daily routine...take a 20 minute quiet time to stretch. When we can't find twenty minutes through the help of a family member sometimes we just have to take it.

Sometimes we think the world, our home will stop, fall apart if we just step out for a moment. It will be there when you return. You just need some time to clear your head too. To renew you..

If you had your license you could just take Lil Miss and go to the park...the beach... the dishes, the clothes..dinner will wait. You maybe surprised and see they rest can fend for themselves...and the dishes maybe done..

And think not about the duration of the dental appointment, but mark off each week, noting how much closer you are to a smile that you will feel great with. Ear to ear grins...

I have two ears..I won't lean one...I will look forward and listen with them both for you..so vent...it does a body good.

Head hug.

06-17-2008, 08:18 AM
Hi Oluwa, hows it going. I have no problem with dentist apps. I'm actually looking forward to them. Its the conflict with meds. Dentist is unsure what he's going to need to actually do until he gets in there. I don't react normally to meds, so not sure if to let me have anything from regular doc. Been on some kind of meds for years, body has nothing right now and its hard to deal with. Plus female thing started 10 days early again. 3rd time this year :x , sure that doesn't help.
I don't know what started first. Lil miss never sleeps thru the night yet. Plus the rain and pressure change. Lots of things. Having this place and you guys help a lot. Just some days are more over-whelming than others. Kids are being good today and that helps a lot. Lil miss only got up once and that helps a lot too. I'm a neat freak, so leaving things undone drives me crazy. I do try to let it go and take kids walking or something. Thanks again for support. Hands achey, so chat more later :D .

06-17-2008, 08:51 AM
OM Gosh ladies -
I dont know how I missed your posts yesterday! Thank you all for your kind words and support and, Jody, thank you for the website. I am currently in forebearance in my mortgage, but, they really made things MUCH worse. Like I said, I called them to "keep them appraised" of why my payments were overdue (This is the firtst thing they tell you to do in mortgage counseling). Well, I would have been better off just keeping my mouth shut, because, they said they would try and approve us for a repayment plan (we had to do this a couple of years ago, and, basically had to give a down payment, and resume monthly payments. The overdue amount was rolled into my loan). Well, this sounded great at the time, but, it started to take a long time. In the meantime, my husband went back to work steady, and I got a fulltime job. I wanted to just start making payments again. They would not allow me to do this while they were deterining a repayment plan (that is normal). I called weekly for MONTHS, trying to talk to the actual loan MITIGATOR, and not just a cust service rep, with no success. This process started in November, and I didnt get to talk to this woman until , I believe, April. When we spoke, I explained everything to her: how we could easily afford the mortgage, how I had a downpayment ready to go, etc. She said that we qualified for a repayment program that would let us KEEP or down payment (in case we got into trouble again) and jsut resum payments. YEAH!
Well, I waited and waited...Then the sherriffs dept came with the notice to appear before a judge about a foreclosure. I FREAKED!!! (Now Im in the flare up of my life at this time as well, and trying to work...)
I called her, and told her like, we need to get this done NOW. So she calls me two days later, and says, "OK, you got the repayment plan, you have to come up with $4000 up front and then DOUBLE mortgage payments for the next 9 months !!!!
Again - FLIPPED - called up the next guy..told him whats going on....
Right now it stands as this: I have since left my job, thus, my savings started to dwindle - however, I sent the $4000. I have already told the NEW guy - listen, NO GO on the double mortgage payments. If I could have afforded that - we wouldnt be talking in the FIRST place. I have yet to hear back from him. So, technically, Im still in forebearance, but I have to now REAPPLY for a new loan mitigation.
They really screwed me over by: 1) Taking so long to make a determination which left us MANY more months behing than we should have been 2) Didnt correctly determine my income, thus, giving me that ridiculous repayment plan.
Anyhow, for sure, it is a CONSTANT source of stress. My illness has had a direct effect on the income here. My hubby makes a great living, but, thats just not enough these days. Most need two incomes. Its sad, I jus tnever pictured my life like this. And then, after an almost symptom-free summer, I took a chance and got a new job. I was sooo happy. Then...the dreaded flare. I tried sooo hard to work through it, but I was on NO meds at the time to help with any symptoms, and it just got too much. So is life. I have to think that God has something much better in store for me down the line...
You guys have been great, supportive - it can really make such a difference in my day.
Love Lauri

06-17-2008, 08:55 AM

Wow, I can tell you about perfection in the home and the transition in letting it wait. I've learned to say when enough is enough since being married and being with IT... I am meticulous, my husband is not. He compromises and I have compromised a lot since it bothers more...then I crack up and say that I can't take it anymore..

I am insane about the outside too but I leave it...I like my edging squared up or circles, not oblongs...so I don't look hard...

My Mum use to say you can have a messy house but the corners, they have to be clean. I have/had to have both. Everything balances to the eyes, well, my eye...I am not perfect, only perfect for myself.

If I can let it pile up, maybe my pile is smaller or larger...but I think if I can, anyone can.

I say it is only dishes, it is only dust on the baseboards...it is only a mint ball in the sink.

I even wash my perfume bottle, my disinfectant bottles, I wipe it all down with bleach water...not a fanatic like I was, now I do it maybe twice a month...

I weighed..clean house or feel good inside, to leave it for a day? Wasn't a tough choice for me.

But, always a but, a shiny squared away house, does my spirit good too. ..but hard on the body in daily upkeep since being with IT, shedding animals and a husband who leaves his shoes in the middle of the floor. I can only imagine if I had children. I am sure I would adapt...love will do that to you...

My Riley Mildred has what I thought Vestibular Disease...the vet said regardless inner ear of brain lesion she will adapt. She will recover but with some possible leaning, tilting residuals..

I see her balancing upright a bit more today. I've been working with here to focus on being balanced, though the vet felt it wouldn't be beneficial but it wouldn't hurt. Oluwa's therapy...

She fell in the pool while I swam. Panicked she did. I rescued her and balanced her as she swam. I don't want her to fear the water, but that one spill in and being off balance either gave her sense to stay away till she recovers or scared. I hope it isn't the latter...ugh..

For the dentist, what are they doing? Crowns? Caps? A little anxiety pill so you are not stressed out about the pain? Laughing gas? A Lortab? Those should be fine, you think with dental and IT?

Can you take birth control, low dose to control your event?

I've been enjoying my day...keeping life small. I fell out last night at 9PM and woke for the day at 7AM. I have been sleeping a lot lately.

I stopped all medicines except Plaquenil and occasional pain reliever. Testing the waters without Protonix...seems alright as long as I mind eats closely thus far. I did order another 3 month prescription just in case. Lyrica, I think it was causing me to swell like a sponge. Off the Prometrium again. I decided after the 4th of July..bang, bang, bang
I am finding a new GYN and scheduling a D&C. Taking control, does my mind good...

All the Flexeril and etc..stopped last month I think it was...

This morning took a shower, dressed and grocery shopped. Vased up 4 vases of flowers.. Took my new fins for a test flip..loving them. I propelled all over the pool like a pro. Had a bowl of fruit for lunch...now debating to go to Lowe's and get a bag or soil to plant a few I forgot about later this evening. I placed them in the beds where I wanted them, and there they sit...

Well, this has been my morning in South Carolina...now for the afternoon to unfold...


06-17-2008, 10:37 AM

I don't think my PM is working, did you send me one? I got an email saying I received one..but nothing there...did you receive mine?


06-17-2008, 10:54 AM
Hi Oluwa, sounds like a busy morning. Love to do anything that deals with plants myself. Sorry the lyrica isn't helping, and causing the swelling. Sounded as if that one might have been a keeper. Has it been better without all the meds? Also glad to see you take contol and get that done.

For the dentist as of the moment: deep probe cleaning, broken into 4 sections w/ seperate app. 2 root canals, 1 crown. Thats until he gets in deeper and says what else :? . More worried over cost than anything. Only got approved for 3/4th the estimate. I'll have to try to pay extra if, I can, to keep it under approval rate. For meds, my body just doesn't react normal. Makes docs leary of combining meds.

For you dog, he'll adjust. Had one that leaned from the day I got him (not sure what caused it). He adjusted quite well, looked cute when he ran or sat. Couldn't help but laugh and smile. Always had the tongue flopped on the same side :lol: . I got your pm, and sent you one too. I'll type it again if needed.

06-17-2008, 01:13 PM
Nope, no PM CV...

The Lyrica..I think it was the combo that was giving me the rush..but I still feel good despite that other days with joint pain and moving at a snail pace...with yawns OOOOooo.. Nothing that a bit of rest and extra sleep couldn't resolve...

Since my tummy is doing great, I feel pretty good. Once I get the back in shape, so I don't have to coddle it..even better....I can't wait.

I was thinking of renaming my dog Eileen.

ooh..the quad cleaning...ouch. My husband had that done when he came to the USA from,..ahemm England... :wink: You know what they say about those Brit's smile. Hasn't had a problem since and that was 9 years ago. He did have a year of maintenancefollowing the deep cleaning... ..every three months. He also had it done in halves and not quads to get it over with...ask your Ortho if he can accommodate if you would like that.

I am wondering if he is thinking bone loss maybe found..has he done his intitial exam...you know pick and number each depth? You want to be ones and twos...fives..ah..too deep. But hey can heal at seven and eights. My husband had a few of those pockets...

With going deep cleaning you might need antibiotics?

Floss after every meal and rinse with salt...

I've been pretty lucky with my bucks since I have SS. I use plackers...a one hand flosser after everything I eat. I have a lot of crowns...a meal can get lodged. Crest, I swear by Crest...

Living in Florida you get to plant all the tropical plants eh....I love those...or are you sub tropical so far up north in Florida...

Hope your afternoon has been great..achy hands still?