View Full Version : Saysusie....

05-09-2008, 10:22 AM
Sleeping in, 10:25 PST...oh, gee... I just remembered you have a doctors appointment. Hope all good comes from it. Not broken I hope. If broken they fix it.

Thank for the emails...It made my wait easier.


05-09-2008, 11:04 AM
I'm here! Doctor's appointments went well. However, I was scolded about "over doing", especially during a flare-up! So, medications were changed, I was given orders to "Ease Up" before I blow my trans axle (Rob will understand that one). But, I just had to come here first :lol:

Thank you for all of your kind words in our e-mails. As I've said, you are an angel :angel:

Peace and Blessings

05-09-2008, 11:26 AM
Ah, you're too sweet and thank you for the wonderful emails too. It would have been a long wait without them...

I am happy your appointment went well. Did he shake his finger at you...

Go take a five, rest from your morning outing...we will be here.


05-09-2008, 03:53 PM
Thanx :lol:
Yes, he did shake his finger at me, lectured me and shook his fingers yet again. My husband asked me how my appointment went and I had to take the 5th (I refuse to answer on the grounds that I may incriminate myself). That was all he needed to hear in order to ascertain that he had an ally in my doctor. So, I am ordered either to bed or to the couch - I chose the couch.
Will catch up with all of you in the morning.

Peace and Blessings

05-09-2008, 04:24 PM
hugsss saysusie...

Hope you're behaving yourself.

Being a complete :lilangel: my self...I never over do *cough

Rest up well

Pretti in Pink
05-09-2008, 05:22 PM
Ya see what happens when we leave her. When she was out of town, we partied and got loose, now when we were away, she goes and get herself in trouble. Saysusie- we are back and we are watching you. Take care of yourself, we need you :D

05-09-2008, 06:19 PM
Saysusie.... :wink: You are in such trouble, young lady :wink: Get thee to the couch...and don't show up here again until you are well rested and taking good care of yourself! We'll be watching! 8)

05-10-2008, 09:24 AM
I'm back......can't stay away for too long. But, I am not allowed to do anything today. That's cool, my sis-in-law is bringing over some old sci-fi movies and I've gathered up my favorites (alien, aliens, Blade Runner, etc) and we are going to have a "Veg Day"

I promise to behave..thanx for keeping me in line! :lol:

Peace and Blessings

05-10-2008, 09:37 AM
Sounds like fun....cant get into much trouble on the couch hahahaha.

05-10-2008, 02:56 PM
Ooooo....Sci Fi....I luv Sci Fi! I'm a wuss, though..the Alien movies had me jumping out of my skin. Did you see I Am Legend with Will Smith? Yikes....gave me nightmares (but I luv Will Smith in anything....and the dog should've won "best supporting actor" :lol:)

05-12-2008, 08:47 AM
Yes, I've seen it....I've purchased it and it was included in our veg-day of Sci-Fi. I actually prefer the alternate ending wherein Will Smith's character does not die. I realize that this is straying from the original short story and the other movies...but, c'mon......it's Will Smith!!! You Can't Kill Off Will Smith!!! :lol:
I cried when he had to strangle his daughter's dog :cry:

Peace and Blessings

05-12-2008, 03:44 PM
I didn't see the alternate ending.....I would've like that a LOT better. Just not right to kill off Will Smith...you are soooooo right. He's got another sci-fi (sort-of) movie coming out - but a bit on the lighter side ("Hancock").

05-13-2008, 04:49 PM
A bit on the late side b ut I wanted to chime in with words that sound like what I get here at home.

Thanks so much for the support and knowledge you hand out at every turn.

I really missed WHL boards when then were down. I would have loved to email people.

Take care and stay on your behind.

05-14-2008, 01:05 PM

The other day from your post I did Movie on Demand of I am a Legend...

It too made me sad seeing through Will Smith's face, acting...strangling the dog. I watched the tight lips, the pain and sadness in his brows and the heavy breathing through his nose.

Sometime when I watch a movie, I watch the acting, if you know what I mean and the extras, the details in the background...people passing, fake laughter in the background...

Hope your R&R has replenished your body. More PT this week?

Out in the corn,

05-14-2008, 01:21 PM
I played and replayed that particular scene for my friends and family who were at the house watching with me (my "veg-day" ended up being a little movie party, but I stayed on the couch, as I was told). I asked, "How many actors can show that kind of pain without saying one single word? Look at his face (as you pointed out), the tight lips, the hard breathing, especially THE PAIN IN HIS EYES!!") as he strangled his beloved dog". In fact, the first 30 minutes of this movie were filled with only Will Smith and his dog....now, only a very intuitive actor could have pulled that off and he did it, very well.
What about the scene when he saw the mannequin in the wrong place? Wasn't that heart wrenching also? You could see all of the emotions going on in his mind; fear, disbelief, wanting to understand, back to fear, back to total disbelief and then to anger!
Will Smith is so 'under rated' as an actor and he has depth that has not even been explored yet. He is, without a doubt, my favorite actor for many reasons (being a faithful husband and good father are on the top of my list of reasons).
I will be the first in line when his new movie comes out!
I am replenished, but I am still not allowed too much activity. I took a short walk yesterday and floated in the pool today [I am restricted to only 20 laps/day - I was doing 80], so I'm feeling a bit better. The best thing is that I actually slept all night last night. That hasn't happened in YEARS!! It's funny how, with these illnesses, those things that others take for granted are such milestones for us, huh?

It is so good to have you back!! We are now faster with more capabilities and more new things are coming!!

Peace and Blessings

05-14-2008, 06:51 PM

Eighty laps, oh, you so crazy...Gee, I am lucky if I can dog paddle two...after eating my DQ cake I need to do 80.

You know, after they stretch my feeding tube and two eeks have gone by my tummy feels normal. Before I always felt it was there, hanging like a pendulum, always queasy, always pain, rumbling. It sure had it's share of misfortunate. The H. Pylori was the worst. I am eating dairy, no nuts though. It just feels good to eat, be satisfied and not here a storm brewing in there, and food getting stuck in the chute...

It was a crazy 12 or so months with my hooper...

Oh, yes, on the sleep. I have been having some excellent nights that would be like heaven I imagine. Out like a light. Hard, deep sleep...wonderful dreams.

I think the Prometrium is helping with the sleep. The Flexeril, maybe, but I think that muscle relaxer has ran its course, and I don't think I should increase it.

Oh, yea, that scene with the mannequin, I could feel his doubt, a sense of is this real and I am not real. Can you imagine the real fear, the real love someone would have to have strangled their dog, the last living being they know.

Hope you had a wonderful day...mine started out just okay..this evening, its all good. Everything's alright...

Sweets Dreams, read you in the next light.

05-15-2008, 10:00 AM
First, I'm happy to hear that your evening was all right! I'm also happy to hear that you are getting restful sleep with pleasant dreams. Unfortunately, I still have a few night terrors, so when I get a night of sleep without the night terrors, I am ever so grateful!
Also, I know it must be wonderful to be able to eat without pain, reflux, nausea etc. I wish that I could eat dairy, but alas, it's not for me :lol:
I say, when you can eat, eat whatever you want to eat and eat as much of it as you can! Live in the moment
Swimming; I LOVE the water. I like to joke that, in my former life, I was a dolphin. Since I was a child, whenever I saw water, I wanted to get in it. That included water fountains (that my poor mother had to drag me away from or chase after me to put my shoes back on!), to lawn sprinklers, to breaking open fire hydrants, to spending 3-4 hours in the tub, to streams, rivers, the ocean and, most definitely, swimming pools! I was on the swim team in high school and, because of that, it was drilled into my head that I had to swim a minimum of 1 mile (80 laps) to stay in shape and to keep my endurance up. Now, mind you, that was in high school! I am 50+ now..so why does my dysfunctional brain tell me that, everytime I get into the pool, I have to swim a mile! Only to come home in pain, absolutely fatigued, laid up for three days...but bragging, "Hey, I swam a mile today" Yes, this is the same person who dishes out advice to everyone else about taking it slow, taking it easy, listening to your body, etc., and there I go...diving in the water and not stopping 'til I've swum a mile!
So, to say that I only swam 40 laps is really an accomplishment for me! It takes a lot of will power for me to get out of the water! (rofl) But, I'm working on it!!
I hope that you enjoy three great meals today and that you have continued beautiful dreams tonight!!

Peace and Blessings

05-21-2008, 08:58 AM
Hey Saysusie,

The pool water was the right temperature yesterday. I was just waiting for sun to hide behind the tree tops....excited, waiting...

A storm, rains and winds, with possible tornado shelved that idea...sigh. Maybe today....

June 1 - November 1 is hurricane season here....

Me, I use to say if I a had a wish, I wish I was a fish. I love water like you, rivers, ponds, lakes, ocean..showers. I miss the hot, sandy, sunny beaches..but getting ill from it has scared me away....a good thing.

I also sometimes don't take my own advice despite knowing the consequences. Some are just worth the consequences, eh...

FMS still tangling with you hard...?


05-21-2008, 10:27 AM
Same here (well, not exactly the same). But, high winds-dropping temperatures do not make for good swim days. I did try yesterday (in spite of the winds) and had to get out because it was sooo cold!

So, I'm taking nice, leisurely walks around the neighborhood instead (I even have to work hard to make myself walk slower). I have to do some form of exercise every day or I feel as if I'm going to turn into a blimp overnight (a carry over from my ED days, I guess).

FM is still not treating me kindly, but the extreme pain is now only a few hours per day (as opposed to all day, every day). The rest of the day is fraught with pain, but it is bearable. What is unbearable is having to take another new medication. I am trying so hard, to avoid that. I know this is a sentiment that we all share, but I am SO SICK OF TAKING PILLS!!! I am SO SICK OF SIDE EFFECTS! I have to take so many pills before bed that I actually consume an half gallon of water to get them all down!

Sorry.....I'm ranting. Let me get back to the subject. I hope that you are still able to eat without distress and that your nights are still restful with sweet dreams.
BTW...I sent you an email regarding your email. Please read it and get back to me ok?

Peace and Blessings

05-22-2008, 06:34 AM
Hi Saysusie...

Rant, rant...we all need to do it sometime.

To make pain bearable it wears on the mind and spirit eh? And to have extreme pain..makes it all worn out.

Pills...Half a gallon, good heavens you must be up and down all night. I am at a turning point with them, denial, belligerent, grimacing with each one I swallow. Feeling like a kid, with arms folded over my chest, muttering nope, nope..through my pursed lips. Feeling like that make the throat tighten up and becomes hard to swallow them down....

The regime from my PP helped with the sleep, but by day I feel, I feel, well,..like crapolla...Each day a bit worse.

Are you still attending PT?

My belly is doing pretty good, just slight pain and burns where the esophagus and the hopper meet. I think it is at the junction. I am still dosing with the Protonix. The esophagus..what a difference a stretch can make...I feel a slight catch, but not stuck at all. I am pleased...

I have an appointment with the Gastro and Rheumatologist (the old one) next week...today the Neurospine. I just dread doctors appointments. Here they are always late, up to 90 minutes. I know I don't have a life, as in a schedule..but it is my time I mutter in my head while I wait.

I am mulling the email over...I will write to it properly when I get back from my appointment today...

I hope those few hours of pain have disappeared...

I might just take a dip when I get back...tomorrow another storm is forecast...

Happy Thursday...hugs.

05-22-2008, 10:37 AM
Today.......RAIN!!! Unbelievable!

Yes, I am up and down all night due to the amount of water I drink to down all of my medications at night. It's not that there are many different meds, its that I have to take 2 of these...5 of those.....3 of the others....etc. I've never been good at taking pills, my throat has a tendency to tighten up. So, I have to get a lot of water in my mouth to get the pill down and then, even more water to ensure that it works it way all of the way down!
The morning pill routine is no different. Except for one prescription, I've purchased a small mortar and pestle and crush those bad boys. I put the powder in my mouth and swallow it with water. It tastes horrible, but it is better than having it get stuck in my throat (been there..done that..my husband had to use the heimlich maneuver to get it out!). Uggh, I just hate all of these pills.
The pain, today, is about a 6 (on a scale of 1-10, where most days have been around 8-10), so I am considering this a good day. It is probably helpful that it is cooler outside and raining. I seem to always do so much better on cold, cloudy, overcast days, I think I even wrote an article on our home page about how much I love rainy days. :P
I really hope that you finally get some total relief from your stomach problems. My daughter suffered with those problems also. She would sip very hot water before and after each bite of food. She said that it helped her. So, we always kept the tea kettle going for her. I'm glad that you are able to sleep at night, but believe me, I understand what you mean about feeling crappy during the day! It's all such a see-saw isn't it? I guess we take what we can get!
Whenever you are finished with and happy with your article, let me know and we will post it!
Thank you for ALWAYS caring and for ALWAYS being my Angel! :angel:

Peace and Blessings

05-22-2008, 04:40 PM

Oh, your brave. Pulverized pills...icky. A small arsenal pf pills. I feel silly for complaining about my little pile of six at night.

Humm, I should try the hot water. I wonder... will it give me a pain. Because before my esophagus was dilated, when I ate hot food, I could feel it slip by the place that hurts and double over till it passes or till I can get a cold drink in me. It was like a brain freeze but a hopper freeze (hot)...

I haven't tried anything hot since the tube stretch..maybe after my appointment.

I left my appointment after waiting a bit over an hour, 65 minutes. I went to bed knowing I would do that. I had an attitude about it and it carried into today. I got frustrated and impatient...So, I shop instead.

Heimlich maneuver..oh no, I know that was frightening. No air. Like someone was holding your breathe. I lodged in my throat a handful of pills with magnesium. I use to be able to swallow pills easily. But that time the magnesium melted and made a cement ball. I threw myself over the back of the chair and it popped out...wow...and I went about my day...to work.

I know we will probably never be pain free..so I hope you can get it under a five....two would be lovely, eh.

Enjoy your evening...


05-23-2008, 07:21 PM
I love the BBQ grill and the hamburger flipper! Oh, that the weather would just allow us to get back to our backyard BBQs :lol:

The hot water....I don't know why it helped Lauri, but for some reason it did! She said that she could feel the hot water going down and it did burn a bit, but it seemed to calm the reflux a bit. Since it worked, we didn't question it much.

Do you mean that you waited 65 minutes for your doctor and never got to see him??? That would strain the nerves of Ghandi. So, I totally understand your frustration lasting for two or more days. I suppose that is one of the good things about an HMO. At Kaiser, if you are not seen within 15 minutes of your appointment, you call member services and register a complaint and the doctor has to come out and explain himself to you! I've never done this, but I read it in our "Patient's Rights" manual! Also, our doctors have to return our phone calls within 24 hours and/or respond to our e-mails within 24 hours. Kaiser don't play!!!

The Heimlich Maneuver....that was one of the scariest things that has ever happened to me. I could not breath, could not get air in or out. I was gasping and clawing at the air. I knew I was dying :cry: When the pill finally came out..I broke down and cried. Perhaps that incident is why I have so much trouble swallowing pills now. I swear, my throat actually closes up. It is probably psychosomatic (like I don't have enough psychotic issues - lol).

No, we will never be pain free. So, we are so grateful and thankful for those days when our pain has subsided. I consider it a blessing when I can vacuum my floors!

I hope you have a restful evening with sweet dreams....and have a wonderful holiday weekend!

Peace and Blessings

06-02-2008, 06:49 AM
Hey Saysusie..

Ah, how did I miss your post a week ago, sorry. And here I was coming to see how you are where you been...putting an APB out on you..

Where are you..how are you...Did you swim yourself out? Wondering where you are or are you on the couch with Will Smith... on the screen.

Seen Iron Man yesterday with my husband, his birthday. Not sci-fi, more like a Marvel Hero. Always the robotic type machines give me the willies...especially when they make that compressing noise with each movement like Terminator...or the villian robot in Robo Cop.

I did wait 65 minutes and left my spine appointment. I felt silly and regretful because of my pain, I called, they apologized and I rescheduled for the 23rd. Crazy.

When I went to my Rheuam appointment, they to were very late. When I mentioned it to the nurse, receptionist. They acted like it was the norm. One girl said, we try to help as many people as we can. Martyr? Sheesh, they charge..I thought and replied. Do you think it is really helping when we have to wait two hours? She gave me the side grin and shrugged, I dunno...sorry.

All these gray tops or no tops (heads) elderly people just sitting patiently, because they accept it as the norm...sigh.

I hope it doesn't happen at my next appointment for July 6...

Other than that I am doing good, great...I am living in the moment, not just the day. Thank for churning my thoughts...


Thinking of you and missing you...

06-02-2008, 09:28 PM
I'm here. Sorry to say, I have not had an opportunity to get into the pool :( Life has been getting in the way and IT has been taking a piggy back ride......galloping along with stress and frustration. They make a pretty trio when I look in the mirror to see raccoon eyes, fallen face and swallow skin.
I know how frustrating it must be to have to deal with overbooked doctors and their uncaring nurses and receptionists. I think that most of the gray-heads have just given up and decided that it was a waste of their precious time to spend it getting angry! Old age will do that to you...you just sit and find something pleasant to occupy your mind :-)
But, hubby has been trying very hard to distract me from it all. So, we did go to see Iron Man and I actually loved it. While it was not Sci-Fi, it was far fetched enough to qualify as good entertainment for me.
tomorrow, he is taking me to Disneyland with my God-Daughter. I will be slathered up with sunscreen (she purchased sunscreen for me, with 75 SPF for UV and UVP), wearing my hat (that I'm sure Hatlady would appreciate), my three layers of shirts, good walking shoes and sunglasses. I am, most definitely, "RETOOGO"
I hope that today is a comforting, relatively pain-free day for you and thanx for always keeping tabs on me :lol:

Peace and Blessings

06-03-2008, 01:12 PM
There you are, Saysusie....I wondered...

So, IT is trying to catch a free ride...hummm. I feel bad, because I am feeling better. I wish we could all be in sync and be well. Hugs...

Not sleeping well either with the raccoon eyes? Anemia?

Yea, Iron Man was good entertainment for me too..usually I do the touch and go with my head. Bobbling like a bobble head from trying to stay awake..

Disneyland...make sure you visit Piglet in the tree house, keep safe, keep protected, the usuals.... and most of all have oodles of fun and take many pictures...

I am doing pretty good these days...the last round of ugly days are so far behind me. It is like..who waz dat gurl. IT makes me feel like Sybil..today I am the real Sybil..Oluwa. I feel like me. Ahhh..it is a nice feeling. Must be the changing of the guards..drugs.

I hope you will be able to swim soon...I know how you love to swim. It is hard when we enjoy something so much and can't...

Head hug...squeeze..

06-05-2008, 02:21 PM
Sweet Angel Oluwa :angel:

Disneyland was wonderful. Hubby got us a room at the Disneyland Hotel so that I could catch the tram back to take a rest and then go back to the park. We've never done that before (we are only 1.5 hrs from Disneyland and usually just do a day trip) and it did make a world of difference for me. I popped back to the hotel room twice each day - each time, I showered, changed clothes, took a short nap, and met my God Daughter back at the park. Yesterday, I popped back to the Hotel and went to the pool where I just floated for about an hour! That was truly wonderful.
By doing it this way, I was actually able to stay with my God-Daughter until the park closed on both days (we did two days there). We did Disneyland and California Adventure - hopping between both parks each day, all day long!
I had no ill effects from our little trip, meaning - I had no NEW aches or pains or fatigue

I am so happy to hear that you are continuing to feel better and that Ms Sybil is taking a hiatus :D Here's hoping that she decides to stay in hiding!

Peace and Blessings

06-06-2008, 10:14 AM

Hey you...

Oh, that was such a good idea with the hotel. My husband's father, we are planning to send for him in Nigeria to come and visit us for three weeks in July August time frame. DisneyWorld is on our list of places to take him.

We plan to do the hotel suite too...Orlando is about 6 hours from my pad...

He has never been to the USA and I have never met him. He went to Nigeria after my husband's Mum and Dad divorced in the UK years ago. I am excited to meet my husband's father. His Mum was a joy when she was here last November..

One of his sisters and one brother may come during that time frame too. I hope IT decides to keep its woes and evils to himself while they are here.

I am so happy you had a great time and IT didn't plaque you with more stuff. It can turn a happy day into an ugly one. It is hard being at a party, an event and pretending to enjoy while IT is tapping you on the shoulder going, ahem, hey, ahem..hey you, I'm here...youuu--whoo...tap, tap...then a push, a shove...who are you ignoring. Finally it wears you down.

I've been swimming a bit lately and enjoying so. You too?

I do mainly the back stroke to protect my spine, but yesterday I was doing the belly float and put a strain on my thoracic..popped a Lortab today and I am fairing better.

It's Friday..have a great weekend...

06-09-2008, 11:22 AM
I, too, hope that IT allows you to truly enjoy your Father-in-Law's visit. This is his first trip to the U.S.; he must be just as excited as you are! Everyone wants to go to one of Disney's theme parks when they come to the U.S., so I'm sure that he will love Disney World! They are offering some great package deals now, some of them also include tickets to other theme parks.
Yes, I have finally been able to get back into the pool. We were in San Diego for the weekend and the hotel had a saline pool. That was my first experience in a saline pool...it was really nice. I didn't do much lap swimming as the pool was rather crowded. But, it was still enjoyable.
I alternate strokes when I am swimming for exercise. I do 10 laps free-style; 10 laps back stroke; 10 laps breast stroke. When I get very tired, I put my swim fins on and just paddle on my back, looking up at the sky and the clouds and the airplanes. It's really relaxing.
Try purchasing some swim fins (they are shorter than snorkeling fins) and lying on your back, let you feet and the fins do all of the work. It is relaxing while providing exercise at the same time and it will take the strain off of your back. I'm glad that you are feeling better and I hope that you can continue to enjoy the water with no more pain! Please take very good care of yourself :D
Hope your weekend was restful and relatively pain-free!

Peace and Blessings

Pretti in Pink
06-09-2008, 12:56 PM

I am glad you had a great trip, that sounds like the way to take it.


I'm sure you can plan it well enought to pull it off the same way. You seem to be remarkably resourceful.

06-09-2008, 03:25 PM
Thank You PIP :lol:


06-10-2008, 08:21 AM
Hi Saysusie..

Enjoying another day on the west coast? The east coast in fine, at my house..everything is just fine.

Thank you for the Disney tip. I'll point my husband in that direction. I've only been to SeaWorld..with Shamo.

I've been floating about in the pool, thank you for the push, a push to get my thoughts rethinking about what was. The was can be just not on a grander scale. Tiny, little.

My dips have turned into 20 minute swims. Water enveloping my body, every curve..it is so nice to float about.

We have a saline pool...it is nice, did you notice no red eyes. Easy to maintain. Push a computer button for more chlorine out put for the salt that was added, or another button to lessen it...

It is just a simple small cell, oh about the size of a small loaf of bread that convert the salt to chlorine. But our filter looks like a space capsule. So large I planted a Yew hedge around it, so my neighbors don't have to look at it.

I guess one can convert their chemical pool with ease to a saline one...maybe check it out, eh...

I will have to buy a pair of those fins, my shoulder joint are fizzling... I used my husbands and they are the regular ones and they feel so cumbersome. I think I will do that right now before I forget.

Thank you for everything Saysusie and keeping me on track about IT, my life...and the fin tip...off to amazon.com...toddles.


06-10-2008, 08:36 AM
Gosh.... so many styles...how does one chose? Maybe these Zoomers Z2 Swim Training Fins......

06-10-2008, 02:58 PM
Did you get the zoomers? Those are good swim fins. Mine are Auqua Spheres. Let me know how you like them.
While on your back, in order to give your shoulders a rest, try doing a figure eight with your arms under water to give you a bit of a push. In this way, you can still work your arms without putting too much stress on them and/or on your shoulders.
Don't forget to keep your sunglasses on while swimming on your back!!!! My best friend, who swims with me, suggested to me that I use snorkel gear (mask and tube) when I am tired and doing free style (free-style breathing can make you tired if you are not doing it properly and when I get to about 70 laps, I stop breathing properly 'cuz I'm tired!). This may also help you to do a few more laps without getting too tired!
So, we are keeping one another motivated to get in (and stay in) the water. My physical therapist told me to try to get into the water every day, if I could! So, between you and him, I may stay on track. So, Thank You Sweet Angel :angel: I hope you have a wonderful day, and a soothing evening with a peaceful night!

Peace and Blessings

06-11-2008, 05:59 AM

Yeppers, my husband order them from Amazon. Should arrive by the weekend...

I am ready to flip but not flop...

My shoulders..right in the dent of the muscle where the deltoid meets the bicep is painful. Inside shoulder joints, soles, palms of my hands and finger joints hurt something awful too. Especially my fingers joint. Feels like I smashed them in a car door. They're not swollen or red...And it hard to lift my arms up from my sides...pain in the dent...

So, these last few nights I have been swallowing Lortab and Flexeril and waking up with a cotton ball filled head....sluggish, mild pain, just tight. I can deal with that.

I'll try the figure 8's today...and try a different stretch...

I am having wonderful days...this pain is manageable., no hinder rash, pinked face but not red...

Doing small increments of fine tuning a daily routine to feel productive, to feel well and finding a balance between being selfless and selfish. Hard to put me first, but now I am taking the "biggest best slice of pizza first from the pizza pie" so to say...

Happy Wednesday..Hugs.

06-11-2008, 08:57 AM
Your avatars always give me a chuckle first thing in the morning! I love this one.
I'm sorry that your pain is such that you cannot lift your arms. I suffer from that same type of pain in my right shoulder off and on. Of course, I blamed it on the swimming :? and if I couldn't blame it on the swimming, I blamed it on the FM, and if I couldn't blame it on the FM, I blamed it on the Lupus.........anyway, you get my drift!
I know exactly what you mean by making a distinction between selfless and selfish. But, from what I know of you, you do not have it in you to be selfish. So, I think you only need to continue to work on being a bit less selfless and keep taking the biggest piece of pizza - after all, you are still leaving plenty of slices for everyone else.
I am scheduled to sing tonight at a banquet. So, today will be a day of rest so that I can have the stamina to sing for 3 hours. The repertoire is mostly head voice songs, so I should do fine!
Have a happy day with some much needed "Me Time!"

Peace and Blessings

06-13-2008, 09:25 AM
Hey you Saysusie...

How goes life today?

How was the banquet? Three hours, did your voice hold out? I listened to your CD, mine now the other day while resting...enjoyed it as much as the first time, second time...third...

I don't know what head voice songs mean. Singing from your memory?


06-13-2008, 05:48 PM
Pretti in Pink...

How goes life..I just zipped past your complimenting post, thank you, you are always so kind...

So what have you been doing? Feeling? Health? Do tell Monica..


06-15-2008, 10:03 AM
Oluwa :lilangel:

Head voice means, essentially, all of the songs were soft, quiet ballads. I did not have to belt out anything, reach for any high notes, or make any strong pronunciations.
The banquet was very nice, there were many more people than anticipated. I managed to get through all three hours. However, yesterday was a stay at home day in order to recuperate :lol:
How was your day? How is your day today? It is a perfect day for floating in the pool and I may do that later this afternoon. My hubby doesn't want to celebrate father's day with a lot of fan fare, so he and I are going to the movies and an early dinner. Afterwards, I am going to the pool.
Have a wonderful day!

Peace and Blessings

06-16-2008, 08:50 AM
How was the movie, Saysusie.....which one?

Thank you for teaching me about head voice. When you hear your voice recorded does it sound like you in your head. My recorded voice gives me the willies. I say that is not me...

The Zoomers arrived, but I still haven't taken them for a dip. They are one piece, formed rubber...they feel nice on.

I had still been achy so I hadn't swam for a few days...but today maybe the day to, after I return from taking my dog to the vet. She either developed a brain lesion or an inner infection...poor girl. Toppling over, staggering about. From my research possible Vestibular Disease...

By my description the vet assistant thought so too when I called for an appointment.

I hope it is the latter. It would be awful, well for me to see her like that..Flopping, with her head tilted to keep her world in balance. Her personality is the same..happy, trying to jump, tail wagging..full of love and spirit. I don't think it bothers her in the slightest, except when she get motion sickness and throws up. She is the same except lopsided...leaning...

From my reads, they can live with either..with the first gosh that would be awful if more lesions were to come. It would be very difficult for me, a decision. It pains me to even imagine it now...zip, out of mind...

We had an early dinner yesterday too, my husband had to sleep early he flew out to Boston this morning and will return back on Friday, early Friday night. Not bedtime, midnight late...

Happy Monday.

06-16-2008, 03:29 PM
Oluwa :lilangel:
We did not make it to the movies. He and I went to dinner, got lazy and decided to go home and chill. Didn't make it to the pool either. Yesterday was just a lazy day for us.
I am so accustomed to hearing my recorded voice singing that it doesn't bother me any more. What I hate to hear is my recorded speaking voice. Like you, I always deny that the voice is mine!
Not doing too well today; energy = 0 pain = 8
But, I am getting in the pool today, no matter what!!!
My best friend (& swim buddy) suggested that I trade in my swim fins for zoomers. Let me know how you like them and how they work for you and I may upgrade to zoomers.
I hope your dog gets better. Is their medication that she can take? Isn't it amazing how their personalities never change? Let me know how she is and what the vet said!
I also hope that your aches subside and that you manage to have a good day today! Get some rest and take care of yourself.

Peace and Blessings

06-17-2008, 09:16 AM
I'm lovin' 'em Saysusie...

I propelled about like a pro. Zip...flip... on the other side of the pool..well, it is only 33' I think, but I got there before one could push the stop clock it felt like. I torpedo from one side to the other with my hands on my side...wow...

Thank you, thank you so much for introducing me to the short fin. I tell you, it felt good to have my heart race, without that sick intense nagging pain. I let my thigh and calves to all the work instead of the full hip thrust and arm movements..I did the figure eights too..thank you.

Just one suggested item to purchase, just one change in a maneuver...ah I feel good. I'm really, really happy you gave me those suggestions...hugs.

I don't know how the Aqua Spheres maneuver...but if they are like these they make the duration in the water longer, a great cardio and really with ease...give them a flip...they may just be better than the spheres.

Energy more than a zero today...and pain less than an eight? Did you get to float at least.

I've been sleeping alot, but today I'm feeling rather good. I wish I could share my feel good with you.

Riley my Jack has what I thought, Vestibular Disease. I guess inner ear infection, brain lesion...either or, she is expected to recover with a possible residual of leaning a bit, losing balance or the head tilt..

She fell into the pool today...didn't doggy paddle too swell. I came to the rescue. I am hoping she won't fear the water now or will just stay away till she recovers. The vet said maybe 2 - 3 weeks. I see improvement already...

It was hard watching her eat. Head tilt, one eye on the bowl, yet missed it, so I had been hand feeding her. Today I pulled out two low edge, big round pasta serving bowls for her water and food...can't miss that.

If it is an ear infection we are dosing with antibiotics...basically it is treat the symptom as if. Regardless if we did an MRI, SCAN...it would just say hey that is what it is and there is no medication for a brain lesion.

Sending you feel good vibes...Hmmmmmmmmmmmm..Hmmmm.


06-17-2008, 10:38 AM
Oluwa :lilangel:
Yes, I did float in the pool yesterday and I intend to do the same today. No matter how bad I feel and how much pain I am in, getting in the water always makes me feel better. My friend and I just floated back and forth making out shapes and animals in the clouds. We laughed and floated; floated and laughed. She and the water are like happy pills for me :lol:
I'm so glad that the fins and the smaller hand movements helped you, especially since they caused much less pain and allowed for more time in the water. Getting outside, in the water and exercising are great medications for us, in so many ways.
I got my B-12 shot today, slept REALLY WELL last night (actually, kinda passed out around 7:30 pm :D ), so I have a bit more energy today and the pain has subsided a bit. I think that today is going to be a better day for me. So, I think some of your "feel good" did make it to Victorville! For that, I have to say "Thank You, Thank You, Thank You!"
I hope that Riley continues to improve, I can hear your love for her in your words. With your love and your 'tender loving care', I'm sure she will. :lol:
Have a WONDERFUL day and keep jetting in the pool!

Peace and Blessings

06-17-2008, 06:49 PM
Saysuie...welcome, welcome..

I am happy that you are having a little break at least from all IT's and FMS stuff...

Sleep, I use to take for granted. Plop, flop and I was out..didn't budge or stir. After wrestling with the sheets for these last years. I just love when I get a good night...puffy eyed, bed wrinkle dents in the cheeks...I love it all...who cares now, unless the puff is a symptom...

Before I use to wake and whine before I went to work...oh, look how awful, puffy eyes...break out the ice, slap the cheeks...now I marvel and admire the look cause I know I just had some goo-oood sleep and I have been having a few of those good nights myself lately. Hoping for another tonight...

I am hoping..one for you too tonight...

Sweet Dreams..almost my bedtime...EST...
Oluwa :sleeping:

06-19-2008, 08:45 AM
So, Sweet Angel;
I am hoping that you awoke this morning to puffy eyes and bed wrinkle dents in your face :lol:
I don't think that the puff is a symptom. I get them also. And, have you noticed, when you get a really, really good nights sleep...you also have sleep crud in the corners of your eyes? Like you, those things that I hated when I was working are all welcome signs of restful rest! :D
Have a Great Day today........hope the heat and humidity do not drain you of any of your "feel good" today!

Peace and Blessings

06-19-2008, 12:39 PM
Hey you...

My face wash mashed into the pillow...I think it is the exercise, workout from the swimming and with the new fins now..you think I am going into a remission? Something is changing... I feel so much better inside and out. Mind and spirit.

I know the goober corner eye crud...that is some hard sleeping.

I just feel great all over, my aches are minor when my spirit is flowing, the mind thinks effortlessly...

I just took fins for a spin again...such a beautiful day...breezy, cloudy and warm... Your push for me...One dip at a time. I'm doing it. Everything doesn't have to be huge to enjoy. A moment at a time...

Another day like tomorrow? My heaven on earth.

Enjoy your afternoon it is just beginning...


06-19-2008, 12:47 PM
Oh, and I just came from the pool..well after I showered. really I am very grateful for those short fins..who knew. I didn't.


06-19-2008, 11:43 PM
Sweet Oluwa;
OMG!! It is sooooo wonderful to hear so much "happy" in your posts and it is so good to know that you are feeling better (both emotionally and physically). I'm especially glad to hear that you are able to get out, get in the water, exercise and still feel good afterwards. What a motivation to continue, huh?
I, too, find that I sleep so much better when I have exercised. Doing so must release some type of melatonin....who knows? We won't question it, we will just be grateful and keep at it.
My swim day was quite nice also. I didn't cat nap at the pool because it was 104 degrees in Victorville today. So, I came home, showered, and took a cat nap on my couch :lol:
So, shall we do it again tomorrow?

Peace and Blessings

06-20-2008, 09:32 AM
Hi Saysusie...

Again..yes...a bit later for me though. Clouds are moving in, but too much sun on the pool still...

Isn't it great..I wish I could share a bit of my feel good...I have some to spare, share.

I am a bit sore, but I contribute it to workout pain and not IT pain. So, I feel an enjoyment in it, believing my weakened muscles from being so sedentary for months is strengthening them, my core, my string...my skeletal muscles. My joints are holding up...

Last year at this time I was so active...tackling projects, painting rooms, balancing on ladders, falling off a ladder...washing my SUV gas guzzler, twirling about, pretending I can leap like a ballerina....sliding on my hardwoods with my white anklet socks like Cruise. I hope it is going be that kind of summer season this year.

Maybe it is the winter and spring weather that activates IT here and then it taunts with me for six months...feeling it is the Grime Reaper then and not a disease..

My husband lands today, should be driving up NLT 6:30PM. No Cinderella pumpkin time tonight. I have marinating baby back ribs in a Jalapeno Honey Marinade. New recipe. It was finger lickin' good in the bowl, oooooh..I can't wait for it after the grilling on the ribs. I hope it is a keeper. If so, I'll share the measurements..

Riley Mildred is still staggering about. Wondering is it improvement I see or her just adapting.

Hope you found goobers in your eyes this morning...

Happy TGIF...

06-20-2008, 10:39 AM

I, too, hope that this summer is one that is filled with more and more "Feel Good" days for you! You certainly deserve it. Even if it does not meet the standard of last summer, I am sure that you will find a way to make it a memorable summer in its own right!
Your pain may be just that, sedentary muscles being worked again. If so, that soreness will eventually go away. I am seeing you having a pain-free summer, your body is becoming more and more fit, and you are wearing endless smiles!! :lol:
So let it be written........So let it be done!!

Peace and Blessings

06-20-2008, 01:15 PM
By golly, it will...

Clouds, and a clapping sky have arrive..

Enjoy your weekend, Saysusie...


06-21-2008, 08:08 AM
BTW...I love the little snorkeling avatar!!! Perfect with goggles and fins.

You have a wonderful weekend too!

Peace and Blessings

06-25-2008, 01:32 PM
Hi ya Saysusie...

I thought it was cute too...snorkel...

Did you have a great weekend too? Stormed here. The skies raise Cain and still is..on and off. My SUV read 102 degrees today after I took a spiel into Pier 1 and World Market. I love junk, color, art...my sister says I am an earth girl. But I do love my pink toenail polish, beach tropical colors too. And she is traditional Victorian.

Had an MRI done yesterday...maybe relief is on it's way for my back. He is thinking, not the middle back, but perhaps a secondary pain from my cervical surgery. Hopefully a little therapy, a tweak, a twist and a pinch I will be good to go.

My neck has always been tight, and pops, cracks since the surgery..what things we get use to and say it is the norm. I was waiting for the bobble head feeling like the ER doctor said when he had his. No difference he could moved it like before. For me, it never happened. Mine has been limited to a 135 degree left to right and can't drop back or look down to touch my chin on my chest. I wondered why...

You should see me when I look over my shoulder while driving...the whole body turns like I am going to crawl into the back sit. I have to be quick for that maneuver, and being stiff it isn't easy...

Dipped yesterday in between the dark clouds, rain and clear sky. I am really glad I have those fins...and here I was beating the hide out of the tops of my feet...

Riley Mildred is still weaving about. The cyst that developed Friday wasn't....just a bug bite. Was huge like a half of cherry.

My auntie who is 87 has been having "mini" seizure..strokes. Like someone shut her off for a moment. She is my Mum's only living relative left. One sister out of nine children left. She is so active and been so healthy...then this...she doesn't remember a thing.

It pains my heart...we have been talking almost everyday for the last three weeks. Before it was every Sunday and sometimes more. I may fly home in August, after the spine, after the gyn stuff...if it is just me, or with my husband we may drive and take the animals in tow. I dread boarding them..they have always flown or road with us...but they too are getting old.

IT hasn't been budding in lately...the neurosurgeon prescribed Darvocet. This milder drug is so much better on the mind than that other stuff I was dosing with. I don't feel mean or down in the dumpies..it takes a nice chunk out of the back pain..not all but enough to feel even better than I have been.

Plans for the 4th? That is just next week. My husband took that week off. We still haven't found our tradition, our thing here yet. Maybe light off a few snaps and bangs at home, take a dip..or I think a nearby park maybe fireworking this year. Cooler of eats and drinks. and a binkie...

It is Hump Day..Happy Wednesday. Hope the first of the week has been marvelous and the remainder will be more so...

Keeping well I hope.

06-25-2008, 10:52 PM
Sweet Oluwa;

The weekend here in the High Desert was HOT HOT HOT!!! Three digits for the entire weekend. I don't mind so much as it is dry heat, so no humidity at all. We did quite a bit of nothing :lol: My sister-in-law and I went to see "The Happening" and I'm still trying to figure out what it was all about. She hated it, but I think that he was trying to tell us something and I'm diligently contemplating what the @#!! that might have been.......global warming? over-use of our resources?...man's inhumanity to man? I just don't know :?

I truly hope that you will get some relief from you neck and back problems. I've never had problems in that area, so I cannot say that I understand what you are going through. I can only imagine how disabling it must be, given the fact that our backbone is the gird of our entire skeletal system. If it is not functioning properly, then everything else is out of whack. So, I am hoping and praying that your neck and back problems are resolved, that you find relief from your pain and that rehabilitation is forthcoming.

I've been in the water every day. Some days, I am doing serious laps..other days, I just float and enjoy the water. My physical therapist tole me to cut down the number of laps that I've been doing (can't do 80 any more :cry:). I have to admit, since I've followed his instructions, my Fibromyalgia has not been kicking my butt (well ,that and new medication and physical therapy!).

I hope you do make it to see your auntie. I know it must be hard witnessing or learning about her mini strokes. Are those known as TIA's?
I hope they do not lead to a massive stroke. I think that it is a small blessing that they do not remember the mini strokes. My husband's mother suffered from several of those and she, also, never rememberd.

We have a small tradition for the 4th of July. We live in a private community with a private lake. Each year, they do fireworks over the lake. We find a nice spot, BBQ, swim, eat and just have fun with our friends and family until dark. Then we all watch the fireworks. It is a splendid show and each year it gets better. I'm looking forward to it, mainly because our little gathering has grown over the years and there will be about 30 of us this year.

I appeared for jury duty today. I knew that I would be dismissed as it was in the same court house that I worked out of as a Probation Officer. I know all of the judges, Public Defenders, District Attorneys, and because my husband was a Capt. in the sheriff's department, I knew all of the bailiffs. The judge chuckled when I walked into the courtroom (his wife is one of my swim buddies) and I was immediately "Thanked and Dismissed"
Other than that, it has been an uneventful, but restful week. I am so happy not to have to have excruciating pain every day, all day! I am still in pain, but it is bearable and I can deal with that.

I hope the rest of your week goes smoothly, with diminishing pain and ever increasing joy!!!

Peace and Blessings

06-27-2008, 11:15 AM
Hi Saysusie....

The Happening? At the theatre..that is an idea to keep cool and still be out and about, out of the sun out of fluorescents lights.

Thank you for your prayers for me...they must be working, because I am feeling good. Even started to paint, pictures...getting the colors in my mind and my creativity flowing again.

Seems inflammation, a build up of fluid, swelling is happening around my spine. Comes and goes, so they say. Today it is coming. Tomorrow start the scareyoids taper pack. And schedule PT to get the ess curve back into my cervical area...

My Auntie...I don't know if they are called TIA's. My brother found her slumped in a chair at the dining table, with her little pink sun bonnet on, unresponsive. Like someone shut her off. He laid her on the bed and call 911. This was her second one that we are aware of.

When the ambulance arrived and started to prep her, is when she "woke up"..confused combative....so unlike her, she wouldn't hurt a bug, or raise her voice to anyone..not even to yell for her dog to come inside.

I love her so much, I keep thinking I should put my back issue, the PT..and etc on hold till I return. Inside I feel like one foot is nail to the floor. I don't know where to go..what to do. I just pivot about in my mind..

Thirty is a nice size...small enough to mingle about. Our community is on a golf course...though mingling about doesn't seem to be here, at least in this new section. Everyone seems to be locked up behind their doors..maybe because it is hot...maybe because most of us are transplants. Thinking they have to mind their own business...dunno.

I am so friendly but I am penned up because of IT...I do the waves as I drive in and out...

It has been a great week, enjoying some small things that use to be.

It's Friday...enjoy. I was telling Rob, with us not working, he and I..everyday can be a Friday..woohooo..

Happy Friday..hugs,

07-02-2008, 06:05 AM
Hey you, Saysusie...sweet teacher..

Still running on fumes or were you able to get a fill up?

Gosh with this steroid taper pack, my joints feel wonderful..normal. What was that...it had been awhile since I felt normal. For my back, the pain is still there so the Darvocet is taking the edge off it...

Was suppose to start therapy today, but they rescheduled for Monday..ugh.

Gosh I am almost tempted to ask for scaryroids daily. I forgot how well they made me fell, but so scared of the long term effects. Do you take them daily?

I'm still swimming, almost daily every time I put my fins on I think of you...the best, thank you. I can feel my muscles under my fat if I press deep enough. I am about 10 pounds over. Can you gain weight fast on steroids short term. I have gained 4lbs in 5 days? My husband says it is the muscles...

Despite recovering from my ED, I still think about fat, but in the healthy context..

It has been just a good, great wonderful few weeks despite the few bouts of insomnia... I wish I could share my feel good. I am up over 24 hours then slepp for 12..crazy. Must be the steroids...

Hump Day Wednesday. Happy Day...I hope you are able to enjoy it...


07-02-2008, 08:24 AM
OMG, how did I miss your earlier post? Must've been a serious brain fog day! I'm wracking my brain trying to figure out what I was doing (or not doing) to cause me to miss your post. Can't seem to come up with anything other than old age and brain fog :lol:
I truly understand your conflicted feeling about your aunt and your need to be with her. But, if you are not feeling well and you put off your own health needs, sweet Oluwa, you won't be much good to her at all. I know it is so very difficult to watch someone you love experience such debilitating health issues. Sometimes, in order to help us cope with this, we have to focus on the quality of life that person had, how many wonderful experiences they enjoyed, how much they touched your life and were responsible for so many wonderful moments in your life! When you look into her face, see those things that made her so dear to you and remember why you love her so much. She will feel that love and that caring and that will mean everything to her. Do not dwell on any sadness, fear, or sorrow....that will not help her.
I am so happy that the steroids are making you feel better. I know the side effects are scary and I don't blame you for being a bit hesitant about taking them daily. You are in that dilemma that so many of us are faced with....weighing the benefits of the drug against the side effects. After this taper pack, perhaps you can think about a very small daily dose of prednisone along with one of the other immunosuppressant/steroid sparing drugs. Now, you know, nothing is without side effects, so you will need to, again, wheigh the mitigating factors against the aggravating factors and decide how you want to proceed.
At any rate, I am all for anything that makes you feel better and I am so happy to hear that you do.
I am still recovering from sun toxicity over the weekend. I took ALL precautions and still ended up sick, sick, sick!! I had to take to bed for an entire day in order to be able to just walk and not throw-up and to not have a pounding headache and to get my temperature back down, and on and on and on.........
But, I'm better today!!!!
I am still swimming also and, everytime I float on my back, I think about you and I hope that you are doing exactly what I am doing :lol: And, what makes me happier is that you've said that, "it has been just a good, great, wonderful few weeks..." Now, that has MADE MY DAY!! You have, indeed, shared your 'feel good'
I am on my way to the movies again...this time to see "Hancock". I'll let you know how it was. So....try treating yourself to a nice entertaining movie in a nice cool theater after you nice swim. Especially now that you are feeling relatively ok. I go to the movies by myself all of the time, I run into a lot of other folks who do the afternoon matinees alone!
Whatever you decide to do, I am happy that you are doing it feeling happy and with less, and less pain! Have a wonderful day, sweet angel :lol:

Peace and Blessings

07-07-2008, 06:06 AM

Still ailing from the sun's wrath? Just amazing how the very thing, the gold ball gives life, sustains life can make us so sick...g-g-g-r-r-r..

Hope you were able to enjoy your 4th...how was the crowd? Eats? Mine was domestic...bangs at home, with BBQ baby back and oh, some heavenly velvet mashed Yukon spuds. A bit of heavy cream mashed in...almost like ice cream to me.

And how was Will in Hancock. We went to see Wanted...loud and boring..yawnie.

My Auntie, sounds wonderful each time I call her, sure, confident in her health, no hestiation in her words. After the mini-S's happen she seems a bit unsure, afraid, trying not to let it show...just by her tone and words she uses I can tell.

The tapered scaryroid pack is done..the joint pain is back, but it hasn't taken away my smiles. The back pain, never left really. It has been worse since I stopped the steroids...so they must have helped a bit. Last dosing, yesterday to rid myself of pain..was 3 Tylenol, then 3 Darvocet. My maximum dose of acetaminophen for the day..all in two hours. Today went straight for two Darvocets..and here I was trying to stay away from those thinking through mud pills...these make me irritable too when I take more than one...ugh.

I wonder which ones won't? I know Demerol doesn't, but I don't think they will prescribe that for IT pain, ya think?

I have PT today for my spine....I hope they can do wonders.

Happy Monday....hugs


07-08-2008, 10:39 AM
Uggh, your pain is back!! Pooh :( Did you discuss a daily low dose of steroids with your doctor? So many pain pills has to be daunting to you, not to mention the side effects. I know you hate the irritability.
Since I got so sick the weekend before the 4th, we were especially careful on the 4th. All of our friends did come and we BBQ'd - we just did everything later in the day (we did not start until aroun 5:30 PM). I was not allowed outside at all until the sun went down. I then joined everyone at the lake to watch the fireworks. But, horrible thing is.....I got sick again anyway!! I just don't understand it. I ended up hurling again, another fever, achy joints, pounding migraine and fatigue that felt like I had been hit by a truck! My hubby thinks that I never fully recovered from the previous flare! Who knows. At any rate, I am housebound for a week :P
I'm glad to hear that your Auntie sounds better. I know that makes you feel better. She will, most likely, continue to improve!
Hancock was GREAT!!! Some critics panned it because they expected Will Smith to be silly and funny throughout the movie and he wasn't. He had serious issues (alcoholism, loneliness, anger) that he had to deal with and so the movie had some serious moments. Also, there is a part of the movie that is serious in its own right. As such, the movie was both funny, and serious with great special effects. I would recommend it!
Oluwa, I hope that you have a restful week and that your pain subsides. Do not lose your "Feel Good" and do talk to your doctor about a daily low-dose of Prednisone (especially given the fact that it works so well for you!).

Peace and Blessings

07-08-2008, 04:56 PM
Hey Saysuie...

Hurling, pain..oh, no...I know what you mean by we do all things right and still get sick. Not fair at all. I think even if we were to become Bubble Gurls we still would get sick...

I hope by this evening you are fairing better..loaded up on DVD's?

Do steroids help with FMS pain and fatigue?

My RheumBA appointment is on the 6th of next month...

Last night my my calves and feet looks like two hot dogs linked...like a rubber band was around my ankle and my flesh grow up and around over it. Or imagine a long blown balloon then twisted in the middle, the twist was my ankle...IT is settling in, and fast..

Will any small dose of scaryroids cause weight gain. I am susceptible to the fat cell. I always find it if it is a side effect...Pain, fat, pain, fat..but then fat can cause mental pain..hummm...

My Riley Mildred decided to venture off...for four hours I searched for her. Hoofed it, biked it...drove around. I'd park the SUV walked till I felt weak, then go back in to cool off..and would drive and walk some more. Through the wetlands, covered in spiders and spider webs.., looking under peoples cars, peering through garage windows. Worried if she fell in the pond, so I looked for evidence or her floating..relieved..neither.

I was afraid she had another stroke like, since she didn't recover from the antibiotics. I was scared she was hurt somewhere when she didn't come to my callings or whistles. .

Gawd I wondered, when does one stop looking???? I cried for a bit, said a prayer, Please let me find her, dead or alive..without her to see visually if dead, I would have a huge hole in my heart, wondering. Please help me, God.

There she was, about 20 blocks away. I choke, and cried with joy as I opened the passenger door, come on Peanut.... I think something happen as she didn't seem to recognize me. I had to get out and walk to her as if she needed to smell me. I am so elated, happy. She has always stayed within a block of home. Crazy girl...

Since her "stroke" her personality has changed a bit, she is like a puppy again....clingy...and best of all she is not crotchy to the cat anymore...

I'll have to check out Hancock...have you seen Hulk?

Hope tomorrow is better for you Saysusie....
Head hug,

07-09-2008, 11:56 AM
Sweet Oluwa;
Unfortunately, weight gain during prednisone therapy is quite common. The weight gain is typically due to a combination of factors: fluid retention, increased calorie consumption, and decreased physical activity. However, if your daily dose is 10mg/day or under, weight gain is not so much of an issue. But, for most of us, such a small dosage is not often prescribed.
Prednisone causes the body to retain sodium (salt) and lose potassium. This combination can result in fluid retention, weight gain, and bloating. With Lauri, we put her on a reduced sodium diet and increased her potassium intake through potassium-rich foods (such as bananas, cantaloupe, grapefruit, and lima beans). She still got the moon face, but not a lot of weight gain (however, for her, weight gain was a good thing).
Prednisone can also cause the redistribution of fat, which makes even a small amount weight gain more intolerable. The weight tends to be located in the face, back of the neck, and the abdomen.
When you start to taper your dosage, the weight gain also begins to taper down. The fluid retention and increased appetite will also decrease. Sticking to your healthy eating and continuing your swimming for regular exercise will be be a great help in keeping and taking off the pounds.
I know exactly what you mean by the emotional stress caused by weight gain! It is not our egos that makes this such an important issue to us...we've dealt with ED and still struggle with our dysmorphic issues. So, I truly understand.
No, Prednisone is not prescribed for Fibromyalgia. But, you mentioned how much better you felt when you were taking Prednisone, so I hoped that a small daily dose might help you to maintain that feeling. I am assuming that the prednisone was prescribed due to issues with your kidneys?
The edema in your legs.....you have brought this to the attention of your doctors? Here's the problem...the edema could be a result of your kidney problems OR a side-effect of the prednisone. Both can cause edema, but the Prednisone can cause fluid retention and edema. How long have you been off of the Prednisone?

I am so happy that you found Riley Mildred and that she was OK. That brought back many memories of searches we had to mount for our Pomeranian, "Hooter". She needs more attention and love and with you, she's with the right person for both.

Just saw "Hulk" and it was much better than I had expected (with Edward Norton, you'd have to expect a better). It actually had a story that was interesting. The first "Hulk" was a waste of celluloid and I was dead set against seeing this one, until my son told me that it was well worth the effort. These summer "Super Hero" movies are all set up for sequels and this was intimated at the end of "Hulk" with a brief appearance by Robert Downey Jr. as his character in "Iron Man".

None of these movies are going to be nominated for any type of award, but they are all fun movies which are entertaining. Right now, that's all I want.....don't want to think hard, don't want to be educated...don't want any political revelations....don't want to see love gone bad....just want some absent minded fun!!!! :D

I hope your back does not trouble you too much. Not much that I can do to help you, but I truly wish that I could. Know that I am ALWAYS wishing you well. Have a wonderful day and a peaceful and restful evening and night!

Peace and Blessings

07-10-2008, 12:45 AM
Hey Saysusie..Our sweet Teacher...

When I was on a regular dosing of scaryroids it was for kidneys, protein spilling in ....but that was quite a spell ago in Seattle...this dose pack was for my spine.

I have high cheek bones, so when I dose with steroids I get huge apple cheeks, not half apples either, the whole round...

Do you think we get the moon face, because of the type of facial tissue...weird how it gravitates to the face.

I stopped the taper pack, I think it was Saturday...the swelling has resolved on it's own. Times that happens out of the blue. I don't do much salt intake...shake or hidden in foods. As a whole I eat mainly fresh..only canned tuna or salmon and frozen peas with a few granules added.

I will ask my RheumBA on the 6th what he thinks about the small dose because that would make a huge difference in my lifestyle, that the joint pain has become my norm but it is wearing.

I'm still swimming like a fish. I feel the muscles under my hard lard (fat)...I will have to cut my eats by a 1/4 to shed this extra 5 pounds I just tossed on. I blow up so easily...maybe it is menopause and I do not have Amenorrhea.

Hopefully on the 6th as I also have an appointment with a new GYN, maybe she can provide something. It feels odd down there, I know it is there...it is not like being just there like an organ, like a lung..I feel it...swollen, achy...crazy...

Knocking my ailments off one by one. My stomach feels like, well it doesn't. It pangs when hunger and tells me when full, normal..compare to a year ago...what an event that was. Oh, I meant to tell you the hot, warm sipping does create a soothing feeling down there. No pain. I still dose with Protonix, trying to go without on and off for the last several weeks. Tomorrow I will try again.

PT was fabulous...they have this TENS unit type of equipment. It is like a millions tiny hands massaging. I would love to have one of those in my home. I had a small TENS unit, but it just sent zaps in and out, in out..but this unit..it was so synchronized, with 4 large pads that it literally felt like a massage...then with heat..oh, it was heavenly.

I could see strapping that on my thigh, on my shoulders...on my calves. I wonder if they make home size...

Stomach done, soon to be my girlie, next my spine...with those three ailments gone, behind me, I should be able to arm wrestle IT without a struggle....

I really believe the almost daily swimming, my eats, rest is what is keeping IT at bay, from swallowing me whole and keeping my spirits way up there. My spine seems such small potatoes when my spirit is high...

Living in the moment, realizing each moment, being grateful for each one is key for me. Thank you for helping to realize that. Before I worried about the day, if I didn't wake feeling well, I felt the whole day was shot.

I hear you on the absent minded fun...sometimes I just want to turn the volume down on life. Times everything seems to be screaming at me, the TV, news, IT...newspapers, Internet...buy me, sell me, analyze this, no this way...he said, she said..spin....I feel like I am in an office chair, and I being pulled, pushed and spun at the same time....

Getting antsy being housebound? It'll do you body good...feeling much better?

Recording a new CD anytime soon?

Insomnia...I have, I attempt many times to return to bed and curl-up tonight maybe this time it will work...off to lalaland....z-z-z-zzzzzzzz. I hope.

Night..Morning, Saysusie...

07-11-2008, 11:57 AM
Hi Oluwa :lilangel:
I think that the moon face is due more to the redistribution of fat caused by Prednisone. I suppose that most of our face is made up of fatty tissue so, it stands to reason that the fat would redistribute itself there. Lauri also had the fat redistribution on the back of her neck, between her shoulder blades (the buffalo hump). But, it was almost unnoticeable (except to her, of course). The truncal obesity is something that we can't seem to get around :cry:
I hope that your doctor will consider a small dosage of Prednisone, just so that you can feel better. You might want to talk to him about a small dosage of Methotrexate (Rheumatrex) or azathioprine (Imuran) if you and he are not really comfortable with the Prednisone or in conjunction with the Prednisone so that you can keep the dosage small.
I remember you speaking about the issues that you had with your kidneys. I wasn't quite sure if you were still having kidney issues or not, but I know that you are having some serious issues with your spine and I really hope that you can find a medication (or a combination thereof) that will give you relief and help ease the pain.
Being housebound was causing me to "nut up" just a little. So, my hubby relented and let me go to the pool yesterday evening. Oh, was I so happy to be in the water. My best friend went with me and, after only 35 minutes, it started to rain!!! Unbelievable!!! But, at least I got out of the house and into the water
I agree with you, our daily swimming, eating right and getting rest does a lot to help us deal with and manage IT (& IT's first cousin..FM). Even tho it seems as if when one thing calms down, the other decides to rage! But, we just keep doing all that we can to stay on top of it and to get some enjoyment out of life. I think that if I could not get into the water, I'd just blow my brains out!!!! (ok..that was an over-statement - but you get my meaning!)
Today is Friday; a bit overcast and still hot! The weekend is upon us and I might be allowed to go to the farmer's market! That sounds exciting to me, after being cooped up all week :lol:

As you said, we are "living in the moment, realizing each moment, being grateful for each moment" That is how we must live our lives, to "Look For the GOOD and PRAISE IT!"

Have a beautiful weekend, sweet angel, keep floating and keep enjoying the moment....all weekend long!


07-13-2008, 03:34 PM
Hey you,

Water to us is like a libation, eh? We need the daily ritual...though lately I have this rash and have been avoiding the water for the last few days...

Cheek to cheek...rashed, dried, itchy...dunno know what to make of it. Had it since Wednesday morning. I tried all my tricks, nothing has worked...hummm.

We had seen The Hulk....it was pretty good with my Raisinettes and H20. I will give it three corns out of five. Hancock, next on the list....

Did you make it to the farmer's market. The market is small here. They usually take place in a parking lot on a certain day of the week. Maybe with the people growth they will actually create a waterfront market..that would be lovely. The market downtown Charleston is somewhat like a new merchandise flea market. Junk. Though they do make beautiful Sweet Grass baskets, urns, containers, wall mounts...other than those items, pretty much junk, t-shirts and etc. Tourist stuff.

Hope you had a lovely weekend. The weekend is over, but we have five whole days for the weekday to enjoy.


07-14-2008, 08:38 PM

How is your rash? Is it the Malar rash? You mentioned that it was cheek to cheek, raised, dried and itchy. This actually sounds more like a discoid rash than the usual malar rash. However, it has been found, lately, that persons with SLE can also have discoid rashes (this Lupus just keeps "mutating").
It has not responded to your usual tricks :cry: I completely understand you wanting to avoid the pool until you can deal with this rash.
I did make it to the Farmer's Market. My mother came with me and we had a very pleasant day (aside from my concern about her diabetes). We sat with our feet in the pond and listened to a band play oldies but goodies for almost an hour. I was so happy to be outdoors and in water (even if it was just up to my ankles) that I was dancing in the pond. My dancing garnered the attention of several other people who took off their shoes and came to dance with me. The Band even had to give us a "shout-out" and called us their "water dancers".
But, as has been my bane lately, I suffered all day Sunday for my frivolity on Saturday :? Oh well!! But, I've decided that I will just have to pay the piper 'cuz I cannot stay cooped up in this house, day in and day out! I will do all that I can to protect myself and take all precautions. But, I cannot let the nausea, fatigue, achy muscles, etc. that I suffer afterwards stop me from enjoying some simple things in life....like hanging out with my Mom at the Farmer's market!
I hope that you are able to get some rest tonight, that your Monday was peaceful and relatively pain free, and that you find a way to deal with your rash so that you can get back into the water!

Peace and Blessings every day

07-15-2008, 07:07 AM
Hey you...Saysusie...

The rash is from face cheek to butt cheek. Mainly allover my neck's front and back, like a turtle neck...upper back, jawline.... chest, breast and the front and back of my biceps. Patches on my forearms, stomach, below the belly button into..er.ah..into my other patch.

I clipped my nails right to the quick..the nails are too short now and burn and so does the rash. It is dry...It itches just around my neck and my pelvic area though the other areas are massed with red pinhead size bumps too. Gazillion..some bigger than a pinhead. I wonder if warmth from my hot flashes aggravates those two areas where it itches the most...hummm..

I 'll check out the discoid rash snaps online and see if it looks like that.

Rash or no rash, I am still in good spirits. I don't get depressed about IT anymore and what it does, but IT does make me upset, g-r-r-rr--rrr when it doesn't give us a moment of rest without inflicting some type of horror movie affect, a new surprise. Then I am over the anger...and live with IT.

Oh, that sounds fun, splashing in the ankle deep pond water...enjoying the day, your Mum and the music, like two little girls...wooohooo.

I am getting a bit shack whacky myself...that running around till I am raggedy sounds inviting. I've been scared straight lace from the flares so, I have been living like a mole. I do get bored...Caring for me is boring.

Another session of PT today...third one thus far. It seems to be working and at home I perform my instructed stretches. Hoping that herniation gets sucked back in...absorbs into me. It isn't impeding on any nerve..just a whole lot of inflammation in the spine. Doesn't seem to tire as easily and the burning is now to a warming, tepid.

Another beautiful day in Carolina...rained last night, hope the humidity isn't high today....

Have you recover from Saturday's fun....hope you have and are able to enjoy today. I am off to find something not so safe to do....tata.


07-15-2008, 09:12 AM
Sweet Oluwa;
No, I still have not completely recovered. Another movie day on the couch 'cuz I hurt all over and I feel like (as Rob described it) I am lying under a lead blanket......can't seem to move. Like you, I try not to be angry when a simple activity lays me low for days. Even my 78 yr old mother was able to go out on Sunday and work in her garden, drive to the mall and do some shopping and come home and clean her house. Me....no.....I had to stay in bed all day Sunday, Almost all day Monday and be house-ridden all day Tuesday. There just does not seem to be any fairness in that at all.
Did you find pictures of Lupus rashes to compare with yours? Have you called your doctor about the rash? Let me know if you'd like me to do some research for you. Your pool is saline right? So, we can't say that chlorine has aggravated your rash (just a thought, even tho I've never heard of that happening). I do hope that you are able to find out exactly what it is and find a way to relieve the itching.
So, just FYI, here are some descriptions of some Lupus rashes:
Discoid rashes occur in patches across the body. These patches tend to be well defined, thickened and scaly, they are slightly red in color and can itch. The appearance can vary between people and also on different areas of the body on the same person. As the patches heal, they tend to leave scars and on darker skins, the pigment in the skin can be lost leaving white areas.
The problem is that almost any type of rash can occur with Lupus, ranging from widespread mild rashes similar to those seen in German measles, to small distinct patches of rash on the elbows and knees resembling psoriasis. There are, however, three particular problems that can occur with Lupus and they are shingles, panniculitis and urticaria.
Shingles may occur anywhere on the trunk of the body. Initially, red patches of rash develop into blisters. Because the virus travels along the nerve to the skin, it can damage the nerve and cause it to become inflamed. Shingles usually affect persons who have had Chicken Pox. Many individuals who develop shingles do have an underlying malignancy or other immunosuppressive condition, such as Lupus. The first sign of shingles is often burning or tingling pain, or sometimes numbness or itch. After several days or a week, a rash of fluid-filled blisters, similar to chickenpox, appears. Shingles pain can be mild or intense. Some people have mostly itching; some feel pain from the gentlest touch or breeze.
Panniculilis is inflammation of the fat below the skin resulting in tender red lumps beneath the surface of the skin; these heal slowly over time and can leave dimpling of the skin when they do fully heal. In nearly all cases there are deep, erythematous plaques and nodules, and some ulcers, which usually involve the proximal extremities, trunk, breasts, buttocks, and face.
Lupus panniculitis is often treated with antimalarials, such as hydroxychloroquine (200 mg once or twice a day). Sometimes, a combination of antimalarials (for example, hydroxychloroquine 200 mg and quinacrine 100 mg daily) has to be used when monotherapy is ineffective.
Urticaria (aka: hives) is an itchy raised red rash similar to nettle rash that can occur with vasculitis or on its own; it heals without leaving scars. This rash is marked by the onset of hives associated with pruritus. The eruption is symptomatic and can be visually apparent over many different parts of the skin. Uticaria can last from a one-time event of several hours' duration up to 6 weeks. If urticaria is present continuously over a 6-week period, it is categorized as chronic urticaria.

Whatever you rash is, I hope that you get some relief very soon. I'm glad that physical therapy is helping you. It did wonders for me and, like you, I am very diligent about doing the exercises at home. How many PT sessions are you to have?

Hope your day is joyful and that you do find something "not-so-safe" to do that does not come back and bite you :P
Have a blessed day my friend!


07-15-2008, 03:19 PM
Dear Saysusie..

Ugh...sorry another day you feel like crapolla. You are right it isn't fair..sheesh how much does IT want from us, eh? All of me?

PT was nice again today. My prescription didn't say how many sessions. My insurance allows 75. I'll go till I say all better.

My event for the day to cure my shack whacky was seeing Hancock. It did mess with the emotions..a chuckle, a sigh of relieve, empathy. I must say Will's acting in the beginning to me, seemed like acting..if you know what I mean. He doesn't play a very good angry drunk. I enjoyed my mental visual of him doing you know what with a head...I roared...and all the 7 other people in the theater roared too. Only eight of us this afternoon at that movie...I think I will see Wall-E next....

I did a bit of research on my rash. I don't know what to make of it...A case of cutaneous lupus or just some crud I found somewhere. From the snaps I had seen it doesn't look like discoid lupus. I will give it till Thursday and do a walk in on that day. I believe my Primary is in till 8PM...

I just hope it is a reaction to something other than lupus related. The snaps I had seen made me cringe and feel for those people who had their eyes covered in the photos....sigh. Mine looks like some of them, but not as intense as in redness...

Our pool is saline, salt..maybe if it is a crud, it will dry it out...I am trying to take tender care of it so it doesn't mar me...

Did I ever mention I get like a huge hive right at my ear lobe where the indent is on the neck. I had one there last weekend...hummm. I took a snap of it. I will see if I can pop one off on my rash and email both to you...Have I ever sent a snap of me?

Rain clouds are in the making here, I can here the sky making them, thunder...gives me a reason to stay inside...

Well, I hope you were able to find yourself, energized after being under the lead blanket today...it gets old layin' about, eh?

I became an Auntie today...my sister in-law had a girl..They reside in Nigeria. The baby won't be named for 7 days...It is a ceremonial tradition in Nigeria.

That has been life today in SC...how about in CA...

Enjoy the night...be well, Saysusie...


07-16-2008, 10:23 AM
Sweet Oluwa;
Doing much better today! Still some aches and pain, but the lead blanket has been replaced with a spongy straight jacket. So, not perfect, but good enough to move about. I have been cleared to go to the pool this evening....yipeee :rainbowafro:
I'm glad that your rash is not as serious as some that you saw. I'm also glad that it doesn't look as if it is Lupus related (aside from the hive at your ear lobe! - that must be painful and annoying at the same time). I think that it is a good idea to see your doctor on Thursday if there has been no change. Perhaps it is an allergic reaction to something and can easily be treated.
I have to agree with you about Will's acting in the beginning of the movie. I felt something was missing, but I couldn't put my finger on it. But, I am such a Will Smith fan that I'm afraid that I am too biased to give accurate critiques of his work :P
We saw "Journey To the Center of the Earth 3d" yesterday. On a scale of 1-10 (10 being best), I give it a 5, due mostly to special effects! Next on our list is the "HellBoy" sequel (although the first one left a lot to be desired) and then "The Mummy" sequel.
I hope that you enjoy Wall-E. Please let me know what you think of it because I promised my God daughter that we would go see it this weekend if I was well enough.
Many congratulations on becoming an AUNTIE!!! Please share some pictures when you receive them! This seems to be the year for baby girls!
Have a wonderful day today in SC. It is a clear, hot sunny day here is SoCal's High Desert. Temperatures in the three digits again :cry: so we will pretty much hibernate until this evening.
Take care and don't forget to let me know how it goes with your doctor about your rash!

Peace and Blessings

07-16-2008, 12:20 PM
Dear Saysusie...

Maybe the pool will remove the straight jacket. I hope so. After I see the doctor tomorrow and hear what he has to say, I will swim again. I miss it.

I do have prescription steroid cream, but it says not to apply to a large area...maybe he can give me a pill...

I watched Hellboy on TV the other day so, I can go watch Hellboy II and know what it is about at the theatre...I need to watch Mummy I and II. The adverts for III seem liked a good flick.

I think with Will..it was how he puckered his mouth and made a snagged top lip up to display his anger and drunkenness. He looked like the expression of something stunk. Didn't look right. My husband kept poking me, saying it looks weird. Then when Will went straight, hero mode..he looked normal...

Keep cool...

07-17-2008, 10:05 AM
How are you feeling this Thursday? How was your doctor's visit? Any diagnosis on the rash? What type of treatment has he prescribed?
I did swim yesterday evening and it was just what I needed. My friend could not join me, so I was in the lap lane by myself. I do a lot of thinking when I'm swimming alone and I resolved some issues (in my mind) that had been causing me stress. One of which was, I had to let a long-time friend go. She was becoming a bit toxic for me and I've been trying very hard to understand her. But, I just have to let her go. Now that I've made the decision, I feel more at peace...funny how that works?
I hope that things went well with your doctor. Can't wait to hear from you!

Peace and Blessings

07-17-2008, 02:12 PM

I know what you mean by a toxic friend. The friend, best friend of almost 20 years, why we moved to SC, I had to choose to discontinue our friendship. A friendship based on untruths from her. Being so close to her daily while having our home built, I had seen her for the first time. It hurt..I felt betrayed. I didn't know what her truth was anymore...I don't think she did either.

The person who was my friend was a fable, a story book, a facade, the girl I knew never existed...who knew..and like you I feel so much better..I no longer tried to compute the reasons why. Once gone, I had no more reason to talk about her.

I too swam yesterday...oh, oh..I enjoyed so. I missed it.

I was diagnosed with Asteatotic eczema...aka as the French say...eczema cracquelée”. Well, I sure don't look like 90 year old womens shins. Maybe the early stages of it, I do. He prescribed Locoid Lipo 0.1% cream, steroid and to keep it lubed with emollients.

I asked him if it was the same as "eczema" he said no. I do have eczema but it is inactive. It came out while I lived in Hawaii..it was a patch the size of a teaplate on my calf. I left it be, would redden up in the sun, the usual. When I left Hawaii, it left too..or did I leave it there...hummm..

PT was great..complete relief is on the way. I noticed such a difference when I went swimming last night. I could lift my head up like a turtle while on my stomach.

So, that has been my Thursday..yours?


07-19-2008, 05:28 PM
Sweet Oluwa;
Well, I feel like an idiot!! My brother has Asteatotic eczema on his ankles and calf areas. He also has severe Atopic eczema with hay fever. Here I was trying to relate your rash to Lupus and never once thought about the rash that I've seen on my brother all of his life!
I'm glad that you got a diagnosis and a treatment. I hope that the rash clears up and that you start feeling better :lol:
My friend was always kind and considerate when she was single, but when she became engaged, it was like she no longer needed me and that I was a hindrance and/or a burden to be around. She would say little hurtful things and I was being left out of events that I had always participated in before. This treatment got worse right before the wedding (which I didn't know about, was not invited to and had to read about in the newspaper).
My hubby says that, when she was single, she needed me because I was always helping her out financially (she had four children and was living on only social security DIB {she is blind} and child support). When she got engaged, she resented me for some reason, and no longer needed my help or my friendship. He also feels that there was some jealousy issues going on. I find this happens too often and I have to say that I would not wish the events of my life on my worst enemy. How could anyone be jealous of me? Please do not judge me by my home, my car, my clothes....you have no idea how much heartache I have suffered and you would not want to suffer those same heartaches!!!
Anyway...I'm ranting...I apologize :cry:
Today is Saturday and, so far, the weekend is turning out nicely. My dearest and best friend threw her back out at work on Friday and is laid up. I've been with her most of the time doing her "running and fetching". But, we've been talking and laughing and watching the "Monk" marathon that she taped. So, I'm in a fairly good mood and on my way to the pool as soon as I put a period on this paragraph.

Peace and Blessings and have a very restful (itch-free) weekend!

07-21-2008, 08:21 AM
Dear Saysusie..you may feel like an idiot, but know you are a far cry from one...

I too was thinking Lupus...but you know I don't even think that was a correct diagnose. It cleared up after one days of smearing the Locoid. The more I think about it I think it has to do with swimming with a T-shirt on....naked is my next option. I was doing the T-shirt over my suit to ward off any sun rays...Today I will not don the cover.

I didn't make to see Wall.E..did you? We went to see Hellboy II. I dozed in and out during the flick. Wasn't because it was dull, though what I did catch was a bit cheesy..it was because I've been having increased fatigued. Extreme exhaustion is settling in..flaming? Maybe. I was so tired I could even eat our early dinner out. Doggy bagged it and came home and slept...

I am still exhausted and I have done nothing to warrant a flame...just because it decide it would be so.

I am sorry what your "friend" had did that to you, had made you feel bad. It hurts...age 7, 27, 47, 57...no matter the reason. People can be jealous of another, but it should only last as long as the nano second it took to pop into there heads.

Shame people continue with those feelings, jealousy instead of turning them into admiration. I can see why many would admire you...you are beautiful inside and out, giving, kind, caring....

Their insecurities, their self loathing, their envies doesn't allow them to admire anyone, but to cut down what they do not have. People like that are easy to come by, and when you find one who admires you, you admire them...it is a good find. A good friendship...

My husband departed this morning for Boston....returning in two Fridays. he is going to see he he can sneak away for the weekend and come home.

Maybe I will strum up a bit of energy to pull the spandex on and go for a dip now...

A new week....lets forget about past friends and enjoy the ones we have with us now..


07-21-2008, 08:49 AM
:angel: Oluwa;
Yes, I agree....let's forget about yesterday and concentrate on today. As my Mom says..."Live in the moment; you can't undo the past and you cannot predict the future, so make this moment - right here and right now- the best moment of your life! Give Love in this moment, spread joy in this moment, be grateful for this moment and give thanks for this moment!"
I am SOOOO happy to hear that the rash has started to clear up. I understand the need for the T-shirt, however. Seems to be a bit of a predicament; protection from the sun vs getting exercise - how does one find a happy balance?
I, too, have those days of extreme exhaustion without many of the other signs of a Lupus flare. I, personally, usually put it off to my FM :? I do hope that you are not heading for a flare-up. Since your hubby is gone, perhaps you can just take a day to rest and care for Oluwa, in order to avoid a flare and to, hopefully, be a bit healthier when he comes home.
We never made it to the movies either (nor did I make it to the pool all weekend). After I put a period on my last paragraph in the previous post, I stood up and went right back down again. So, I was housebound :roll: My sister-in-law brought over movies and he watched horror flicks all day Saturday and Sunday.
I hope that your week begins on a good note, I'm glad the rash is clearing up and I pray that you DO NOT slide into a flare-up.

Peace and Blessings

07-21-2008, 02:16 PM
Dear Saysusie..

From your Mum, to you ..to me..great outlook...

I did pull the spandex on and took a 45 minute swim...

With the T-shirt on, I think the problem was I didn't rinse it or change it for two days. Just hung to dry. Usually I change up...and also the night before it broke out I didn't shower...too pooped, so, I think that all contributed to the cause after thinking about it.

It was probably a crud that required steroid cream because the home remedies fell way short. I didn't use my other steroid cream because the box said do not apply over a large area. When I mentioned that to my doctor he laugh and said didn't I just get done taking oral steroids....well, ya.

I was thinking it would thin my skin or turn dark as to why not..not so much of just the absorption factor...next time, hopefully there won't be I will break out all creams..

The skies are moaning overhead...like an upset stomach. No rain, no lightning that I can see. We have had a heat warning though...Must be about 105 inland where I am at....

Hey, with FMS can the symptoms be accumulative like Lupus?

I hope you're still not housebound, are you?

Happy Monday....

07-22-2008, 11:15 AM
:lilangel: Oluwa;

Yes, unfortunately, FM symptoms can me accumulative :x . I've, actually, given up on trying to discern which pain is from which illness (uggh!). Especially since my Lupus has not affected any of my internal organs....so, it is anyone's guess as to what is causing what. But, they both can be accumulative, so my phrase is usually, "whatever!"
I'm glad that you did get into the pool. I learned about not bathing after the pool the hard way too! Sometimes, getting our exercise puts us at the bottom level of energy and we just collapse afterwards. I did not get a rash, but my skin itched like crazy on every inch of my body. It was maddening as I could not (at first) understand what was going on and I was scratching so much that I drew blood on my legs. My hubby finally suggested that I take a nice cool shower to see if that helped....and it did. I rubbed down with neosporin (primarily for the open scratches all over my body) and by the next day, I was better. I, then, realized that I had to shower after my swims no matter how tired I was.
Our days here is SoCal's High Desert have remained in the three digits, in spite of cloud cover! I will be going to the pool today for a little while.
I'm glad that the steroids are still helping with your rash :D So, I will be thinking about you today when I am in the pool; hoping that you are doing the same and enjoying it!
Have a wonderful day!

Peace and Blessings

07-24-2008, 07:20 PM
Hey you Dear Saysusie...

Sounds like you tore up your skin..when I get the uncontrollable itches, I clip and snip my nails to the quick...

Life this week..dull, dull.

Oh, I got a traffic violations. Failure to stop at a red light today. I made the wrong decision when I saw the light was yellow. They tailgate really bad here, so instead of stopping fearing a rear end accident, I, well, gave it gas and I heard the whirly bird...$155.00, 4 points if found guilty. And I wasn't even in a hurry either.

I just turned my head to the right, when I came back around to the front I had seen yellow and floored it...I am guilty to a certain degree... so that was my big event for the week...and yours?

Went to the GYN today. She said by the test I had with the Veterinarian, I swear she is, that my former GYN treats animals..but anyway the lab results read I am post menopausal. No babies ever of me...sigh. I always dreamed even being 47.

Instead of me trying to dose with Prometruim, believing I have amenorrhea because menses just stopped...no psycho symptoms, gone one day and never came back she should have said no more eggs in my basket.

I asked her about the D&C and she sees no reason for it, unless my lining has thickened more. I have an Ultrasound scheduled for the July 29....

Enjoy the day..tata.

07-26-2008, 12:59 PM
Sweet Oluwa;
Your traffic violation sounds exactly like mine! As I was speeding through the intersection, I saw the camera flash and knew that I was going to be in big trouble. However, I never received a ticket in the mail...so I guess I got lucky (actually, a car sped through behind me. Perhaps they received the ticket).
But, two days later, I misread divider lines in the road and thought that I was going into a left turn lane. It was not (double yellow lines on both sides should have been my clue), so I had to force my way back into the flow of traffic, causing other drivers to have to slam on their brakes to let me back in. Afterwards, I heard the "whoop whoop" behind me and saw the flashing lights on an unmarked car. I pulled over and I watched the plain-clothed officer exit his vehicle. I could see the anger all over his face. I was with my God-Daughter and I said to her that again, I was in big-time trouble.
I had the top down on my car and the officer came up to the passenger side, slammed his fists on my door, leaned in and looked at me. Now, here, I must tell you that we are patrolled by the County Sheriff's Department and my husband was the Captain up here for 24 years. So, most of the Sheriff's still know me and they all still refer to my husband as Captain.
The officer looked at me with intense anger, then his eyes widened and he stood up and said "SH@#!...Forget it Susie...go home and tell your husband I said hello!" I did admit to him that I realized that I was 100% wrong and I was very, very sorry. He just laughed and told me to drive carefully and that he hoped my husband and I were still coming to his BBQ that weekend (he turned out to be a good friend of ours)!
Sometimes it pays to have connections and to know people, although by the time that I got home, he had already called my husband and told on me :lol: I just got that "shame on you" shake of my husband's head (lol)
Needless to say, after two close calls, I am extremely careful and very mindful of the rules of the road.
I'm sorry to hear that you are entering menopause. My sister-in-law was told the same thing and had no menstruation for 4yrs, until about 3 months ago when she started menstruating again! She is not happy about that at all on one hand, but excited that pregnancy is now a possibility on the other hand. She, too, is in her 40's and hoping for her first pregnancy. So, perhaps all is not final for either of you! Hopefully the ultrasound will not confirm bad news :cry:
Today is Saturday and I sang last night, so I am resting today. I hope that you have a wonderful day that is not too boring or tedious. Find something that makes you smile and delve into it! You deserve it!


07-28-2008, 12:20 PM
Hi Dear Saysusie....

I love the whoop, whoop...

It is great to have connections like that, I wish I had them. I dislike explaining myself. I was going to just pay it, but after consulting with a few native Carolinians they say I need to state my case, to have it dropped or lessened. Twelve is the top points before they suspend your license, starting at three months and up. Four, a third of the way there...egads. I don't plan on getting anymore, but the driving here is crazy....

Just today I had seen five people run a red light. I think the yellow is too short...or the red light is too long and impatience seems to set in. Me, I am a defensive driver, especially here..I feel like my eyes look like the Terminators, darting side to side. I just made a bad decision...

Since the stop is fresh in my mind..I have my eyes glued on the signal lights now.

Did the PT this morning...feeling still good. Soon zero pain, I hope...

Where did you sing at this time? Are you planning on recording another CD?

No movies this weekend...the only thing I saw was the back of my eyelids...we slept the weekend pretty much away, except for a few feedings.

A new week...nothing planned. Hot..97 this morning. Makes for a lazy day...lounging inside with the a/c roaring. Now I know why this area is slow moving, slow talking, slow stride..the heat and humidity.

One never hears of activities being promoted outside. Parks are far and few...not into fitness here and it is a rarity to see anyone jogging or biking. Funny they have a fitness center called Anytime Fitness, but it is only opened from 7 -7....

Restaurants menus are very fat and high caloric content. I have yet to find a salad without fructose salad dressing. I'd love a big salad with spinach, walnuts, pecan, berries...nope.

For bread starters, some places serve a basket of cornbread...a ball of butter, drizzled with honey and sprinkle with cinnamon. Fried here isn't a verb it is an adjective to describe most food..fried and juicy. And some of the Buttermilk fried juicy chicken is oh, so outstanding...

No thin friendly eateries around here. I told my husband I will end up with corn fed arms in a few years...


07-28-2008, 04:23 PM
Sweet Oluwa;
I am happy to hear that you slept the weekend away. That is such a luxory for us nowadays! So, when I hear that someone was able to sleep away the weekend, I yell YIPPEE!!! :multi: Somebody is getting some good rest!!!
I am a defensive driver also, and having a sports car only makes me worse. My favorite saying, when I'm driving very aggressively, is "Hey, I'm in a sports car, I can out maneuver everyone on this road and I can go from 0-60 in 6 seconds.....so GET OUTTA MY WAY!!!" I really should be in jail for some of the stunts that I've pulled :oops:
I sang at a jazz club, newly opened and trying to get customers. I've agreed to sing every Friday evening, in the hopes that this will bring more people in. The owner is very understanding of my limitations and has said that, on any Friday that I feel as if I just can't do it, just call him and let him know and he will remove my poster from the window.
I am in the studio now (well not like right now :roll: ) trying to finish up my jazz CD. I go in and try to lay down at least three tracks per song, in that way, the engineer can pick the best parts of each track. However, doing it this way usually means that I can only do 1-2 songs each time I go and I can only get into the studio 1-2 times per month. The CD will have between 14-16 songs, so it's going to be a time consuming project. Especially given the fact that the musicians are pretty much doing the same thing. As soon as it is finished (we are thinking by the end of this year), it will be available on-line. My manager has hired someone to do a web-site for me since so many people have been asking how they can be kept in the loop about my performances. When that is completed, all of my CD's will be available on my web site (I will have a total of 4 CD's when I finish this one!).
I am so jazzed that your PT is working...that you are looking forward to zero pain and that you are getting some recuperative rest! That truly puts a smile on my face :D I hope that your week continues to find you in good spirits and in ever improving health! You deserve to have some good days!!

Peace and Blessings

07-30-2008, 09:22 AM
Dear Saysusie..

Oh, I didn't know you have 3 CD's out...all of them still available. I have just the one I'm Alright...

Indeed, I have been having good days, but a tad bored. I pace. Either we have been having torrential rains or just too hot and humid to move out and about outside...

Yesterday I felt like I was in a plasma ball as the lightning hit the ground all around me while driving from my appointments...frightening. My excitement for the week....

Hope yours was more...

07-30-2008, 10:36 AM
Sweet Oluwa;
Well, aside from the 5.6 earthquake that we had yesterday, all is well :scrambleup:
Fortunately, no one was hurt and no one in my family had any property damage. Immediately afterwards, we all called each other to make sure that we were all OK. I was very worried for my Mom as she lives in an older home that has not been retrofit! She said that her house jerked and shook...nothing fell or broke (other than her calm).
We are still feeling very, very small aftershocks...but nothing to be concerned about.
I would welcome some rain at this point. We remain in the 3 digits here in the High Desert. But, I could do without the lightning :P
Keep enjoying these good days that you are having! I can't tell you how happy I am to know that you are having so many of them!
Hope your week continues to be one that gives you less and less pain and more and more good days!

Peace and Blessings

oh...btw; My other CDs are not available online as they were part of a radio show that I did with a minister. There's the whole issue of rights. I can sell them personally, but I cannot promote them :cry:

08-04-2008, 12:08 PM
Oh, that is right they mention the earthquake, I thought of you and zip that is all she wrote...I am happy you and yours are alright. Earthquakes are frightful.

I was living in Fremont, East Bay...by San Fran when the one The Quake of '89 cracked the earth and crumbled bridges and building....

I was frightened to say the least...dishes crashed, potted plants on the floor..the windows sounded like they were going to blow. Yak, yak, yak. The dining room chandler swung, like a swing...then a calm...

The world seemed to have died the days that follow...

I was an AC at Moffet Field...our base was the only runway that didn't sustain any damages. So, we were busy with Air Force One and his entourage. Daddy Bush then and Quayle.

I was the Assistant Base Ops Officer then,..what a responsibility. I just remember being not stop. It takes quite an effort to bring the President in without appearing to be scrabbling about. I was amazed at how efficient in and out secret service is...they took over the whole place...and in a bat of an eye they were gone.

Life in SC still dull, still hot..I am drained. I've been hiding indoors, not even out to shop except for a few items from the Department Hardware stores...

Fatigue is settling in as though I had never slept for days...It seems to be calling my name towards him, but I am doing my prevention..

RheumBA appointment tomorrow...and hopefully again I get an A....

I wrote a few posts..I am petering out...

Hope you had a great weekend...and FMS hasn't tossed you about..

Time to get some Zzzzzzzzzzz's.


08-04-2008, 10:55 PM
Sleep well, sweet Oluwa, and make your days restful so that Mr. Fatigue does not dominate!
I'm not going to write much so that you do not feel compelled to respond :lol:
Just take care of yourself and you and I can chat when you feel better.

I do not often get to see or talk to my brother, so when I do, I always tell him that I don't have to see him or talk to him everyday to know that he loves me....the same is true for you!!!

Take Care ....Sweet Dreams...
Peace and Blessings

08-07-2008, 11:07 AM
Dear Saysusie..

And how are you, feeling good vibes or the mean vibes of IT and FMS?

I still feel the side affects of PT and swimming. Just not recovering like I use to ...wondering what I am doing different.

I did ask my RheumBA about a small dose of Prednisone. Nope. Only when I can't walk. Just not worth the risks for my symptoms. I feel like a noodle, limp, tired, weak and fatigue. My joint feel like they are being twisted out of the socket. I didn't go to PT today, I swam yesterday. When I swim, I feel alright, but when I showered and dry off...drained and my mouth is the shape of a church choir girl singing..O..but without the song, just a moan....wha' happened...humm. I feel like rust has set in..

I am quite the bore lately..no movies, no dinners..how about you. I think I will make an effort today and do a BBQ. This southern weather is not for me. I prefer the drizzle rains of the Pacific Northwest...speaking of the PNW I wonder how Browneyedgirl is doing. Hear from her since she last posted?

In such hot heat how do you stay cool..or does it drain you just to walk from the house to the car too? Tomorrow the temperature is suppose to decrease by five or so degrees. The pool is hot, 95 and to cool off a dip in a water filled bathtub is better...

We may head to UP for Halloween and fall leaves as my Nigerian Dad may not be able to come till next year. He can't get an appointment with the US Embassy until next year, but my husband is looking into it as they have a relative who works there..but if not it is carved pumpkins and bit size candy bars, and it is my sister and her twin boys birthday. All three were born on the same day.

We've invited our Mum-in-law who is now in Toronto visiting with her two grandchildren and daughter for two months to visit us for the first week in September, our treat. She sounded so bored when I spoke to her as they go to work and the girls go to the nursery...so she says she watches movies. I said we need to do something...so we are for the first week in September for a week.

I have much posts to catch up on, see all the new people...dozens. Maybe later this day, I will welcome them too...

Enjoy this day..hugs,

09-24-2008, 06:41 AM
Dear Saysusie..Helllo-o-o---oooo out there.

Wondering how you are. Wondering if you received, opened my email from last week...

Hope life, lupus, fibro hasn't been giving you a whooping....how are you?

Summer is ending, cool temps are flowing through our sheer drapes as the A/C is off and the windows are open.

Ah, such wonderful noises fill the room of nature now...the sweet smell of mowed grass and not the forced air of a cooling machine....

Though swimming is now past, fins in a box...I look forward to greasing up the chains on our bikes and inflating the tires for those evening rides ahead...

What is on your agenda for fall/winter activity...

Head hug..hope all is well, well..at least some things...are they?


09-24-2008, 11:29 AM
Oluwa, sweet angel;
We were out of town and I got your e-mail Monday. I just responded to it this morning and here you are!
Unfortunately, Life - Lupus - FM have not been particularly kind to me. But I keep plugging along.
Summer is still in full force here in the High Desert, but because of my health, I've not been in the pool for 2 weeks now :cry: I truly miss it! I still have 2-3 weeks left of swim weather, so I am going to be diligent about making the best use of the time remaining
My husband mentioned bike riding once the weather cools down. We have a tandem and I really enjoy riding (although I make him do most of the work). Especially when we pack the bike up, drive to the beach and ride. Those are always very special days for me. Otherwise, winter means nice brisk walks in the morning or me & Gilad in my den.
We do not travel as much in the winter, so I'm looking forward to a little quiet time at home. Otherwise, no real winter plans.
How have you been feeling? How is the numbness and tingling after the injection? And, is the Protonix helping with your digestion?
Like you, I am counting down to vacation time :lol: After being so sick during the last one, I am hoping and praying that I can enjoy this one.
Thank you for missing me, for looking for me, and for asking about me!
You are, always, my angel!

Peace and Blessings

09-26-2008, 09:07 AM
Dear Saysusie...how could I not miss you.

A tandem, how fun....Lupus, Fibro how not so fun.

I am still scratching. With each itch it spreads, now it is climbing up my lower back. Seems the Plaquenil is not working for my rashes. I thought perhaps stress but the stress factor is gone...hummm.

Protonix is bringing me much relief with two pills a day. I wonder how much nutrients it stops from being absorbed....maybe an appointment with the Gastro is due...egads.

I still have numbness in my two fingers, left pinkie and ring but it has subsided in my forearm and bicep.

After the injections, it went okay for two days, then worse, then the worst. Stopped PT. As of late I've been strapping an ice bottle with an ace bandage to my upper back. Before going to sleep last night, my husband massage my whole back, I popped a Lortab and it feels sooooooooooo much better.

I think the shots did more harm than good. Initially felt like help was on the way, but it created such secondary pain. It is really hard to know what causes what when you change up more than one thing at a time.

Now my back is back to the pain it was before the five shots...erg. Weird, but it is better the way it was...is.

Yesterday, the 25th I listened to my phone messages. The neurosurgeon office recorded.... they would like to remind me of my appointment September 25, at 11:15. Huh? I missed it. I forgot..well, actually I still don't remember having made that appointment in the first place. Twilight Zone...hearing it made me feel creepy.

Some days it is so hard for me to remember. It is like my memory is impenetrable. Literally I feel like a steel wall is in place, in my head as my thoughts try to look for a crack, try to wedge through it....push it to the side, climb over it...but I can't. SLE or pain meds?

Still plugging along? Feeling better for you weekend getaway? I do, hope so...enjoy it and we'll chat up when you get back...


09-26-2008, 11:26 AM
Oh, how the memory issues sound so familiar to me. I have to write things down on my calendar, input them into the calendar on my phone, write them down on the white board in the kitchen, and finally put stickys on my computer. Even after doing all of that, there are still many things that I forget and/or overlook :(
I've gotten to the point where I don't want to try to remember everything, it is much to daunting a task to do so. My head feels like there are millions of bees swarming around inside of there whenever I try to recall anything. I just want to go lie down and forget everything...just turn the lights off, close the door, draw the shades and let me just lie there! I just realized that my feelings sound a lot like depression. Perhaps I am a bit depressed...it's been a difficult month!
Have you told your doctor that the injections are causing much more pain that the symptoms they were prescribed for? That doesn't make much sense to me, that they'd prescribe a regimen that aggravates the condition. I'm with you about discontinuing it. If the massages and the Lortabs work, stick with that regimen.
I've also been sleeping with ice packs. My husband bought me two packs that slip inside of a re-usable self-adhesive wrap. I can place it anywhere on my body and oh, does it feel good. Especially when inflammation is causing so much pain!
Right now, I am sooooooooo fatigued, my body feels as if (as Rob described it) I'm weighted down by a lead blanket. I can't seem to move my arms or my legs and I've been having horrible headaches every day - all day long! My bones hurt, my muscles hurt, I'm throwing up - can't figure that one out - and have lost my appetite completely! No fun.
BUT, my best friend and I did get to the pool yesterday. Did more floating than swimming (I was just too weak), but that was fine...I was in the water. We curled up under our towels and lay on the chaises talking for almost 2 hours before we headed home. I felt so much better (emotionally).
We are leaving tonight for our second try at a little vacation get-a-way. I've packed all of my medications - even my just-in-case stuff - and am anxious to go. I will be back on October 4th. Until then, I know that Rob will take care of our family and you (a moderator by proxy) will also be there for those who are in need. Just having that bit of peace of mind will help me to make it through the week will less stressors.
Take Care, sweet angel....CYA later

10-07-2008, 07:12 AM
Hi you..

I see you are back from your vacation...Welcome home....I missed you. How was it? Better than the last one? Less stress, rested....alleviated your depression. Depression hurts the body too...

Times I find just being somewhere new feeds the mind and makes me feel happy....

I do hope IT and IT's cronies gave you reprieve and the bees have left the hive.

Have you pulled out your tandem bike yet...we did a few spins for a couple of night. Not bad on my joints.

I am now dosing with Lunesta..ever try that drug. My eyes still open, wake up..but I can fall back to sleep immediately. My body feels rested with less pain now, but boy do I ever yawn...

You mentioned you've been through cancer. Am I being too personal if I ask where..its okay if you say it is...

Wow, this last biopsy was a doosie. I survived. I wrote about the event on my very first thread when I met you. I go something like this.

I am glad you have a best friend to chat up with, makes living with our disease so much better. Do you ever talk about Lupus, FMS together or all has been said. I only talk here...

When I mention an ailment, I feel like no one in my family really wants to hear of it..so I no longer say anything. They seem uncomfortable with words of illness. I speak with my husband..with him I can tell he just wants to fix it but feels frustrated because he doesn't know how.

My brother, who was here this past Spring, we are best friends...we chat up about anything and everything except IT..if we do it is mentioned in passing. We send each other surprises. State quarters we collect. I just sent him three bottles of Texas Pete Hotter Sauce...couldn't find it in Seattle. I turned him onto it, two years ago.

I hope the real estate market picks up here as I do, so much want to move. I think the weather here brings out the worse in me, in Lupus. Just like theplants here, the right condition of humidity and heat, our yard has a brown fungus. Like me with my skin. I feel dirty, with a fungi.

I thought the rash was shrinking, but I was inspected by my husband this morning. He said, nope. Just not red and the scabs healed, but it is still covering my trunk and elbows...a gazillion skin toned bumps...g-r-r-rr. Sucks for lack of a proper words... I've been having so much control over the itching. Itching made it itchier.

Hope since you've been back, life has been stress-free...enjoy the day. I am. Happy Tuesday..

Hugs full of love,

10-07-2008, 12:24 PM
Oluwa :angel:

Yes, the week away did wonders for me emotionally. I think that I was getting rather depressed and being in constant pain with that all-over sick feeling was not helping much. The pain has subsided a bit (or could it be that I am feeling better emotionally?). Whatever the case, I am grateful for the reprieve.
We have not pulled out our tandem yet. But, hubby promises that we will. Just being out in the air makes me feel better.
By best friend is a Director of Nurses and so I can talk to her about my Lupus, Fibromyalgia, and all of my other various illnesses. She is a wealth of information, but even better, she is a very good listener and she always gives me comfort and support. I also can talk to my husband about everything. While he often tries to "fix it", most times he does just let me know that he understands. I am sorry that you do not have that, but as you said, you can always come here and talk to me and/or everyone else here. You know that we understand, we care about you and we really want to help!
I'm glad that you are getting some relief from your rash. I wish, like you, that it was gone. But, I guess that we have to have a bit more patience as it sounds as if it is healing slowly.
I had thyroid cancer. I discovered it myself (the lump) and so it was caught very early. I did have surgery to have it removed and then had to do three years of iodine treatment. I take thyroid medication daily and have bi-yearly follow-up appointments with my endocrinologist (sp?). It was quite a scare for us at the time and now, every time that I find a lump or bump on my body, I freak out. I just had a MRI on a lump on my upper right thigh that my doctor said was probably benign. But, I insisted that we find out exactly what it was before I would be able to relax about it :mad: So, we'll see in approximately 10 days!
I think that I'll ask my doctor about Lunesta. I had to stop taking the sleep medication that she prescribed because it was aggravating my migraines. I won't mind the yawning if I can get some rest with less pain.
I hope that your day goes well and that you have another restful night!
Talk to you tomorrow..................

Peace and Blessings

10-08-2008, 08:30 AM
Hi you...

Lumps bumps, with Lupus.... so many things to cause fears in us..especially since you have been through cancer. I am so thankful you found it early and treatment was a success.

A disease that causes so much fear...we need reassurance, medical evidence that future lumps and bumps are benign. Prayers go out from me for you... It will be benign. Head hug...

I am happy to know you are finding an emotional better. Young, old, experience of many years or a few months with the disease is hard on all of us. I think the difference as we live with it longer, age...we just become more experience, more articulate in knowing, describing our pain. Knowing the cause..but I think the mental hurt, the hurt spirit is the same. And with more experience we learn to find ways out of the stupid hole. I fall in, I teeter at the edge..but most of the time I am just a foot away.

Do you think you are feeling blue as Lauri's Birthday approaches Friday....hugs. I wish I could say something to soften the sadness. I hope you are able to celebrate her life, her day and not feel a sad mourning. I am here, tell me of her wonderful smile, how she giggle...what was her craziest birthday....

Yes, do give the Lunesta a whirl. It says it is a non-narcotic sleeping pill and has a low dependency. They suggest not to flat out stop it when taking long term. Unlike Ambien's take it as needed....with Lunestra I was told it is taken nightly, which I was prescribed tooo. Stopping cold, turkey, if you will, doesn't create insomnia like the others would...so I was told... Also you get refills, unlike Ambien I was only prescribed the one... without refills.

Today I didn't wake with the yawnies..but my body does feel so much better. My attitude doesn't feel so grim...I see there is a big connection of finding the sleep, sleeping to heal the blues, the pains and aches.

The rash..I am trying to have complete restraint. As long as I don't itch it it it doesn't worsen. Heals but the bumps are still there. I just haven't scratch them off. When I have skin to skin contact it burns. I may go in for that biopsy with my PCP or I'm debating it with... see a dermatologist and wait the usual wait...5 -6 weeks...g-g-g-r-rr-.

I just solved the debate..I just called my PCP..tomorrow at 12:10.

I keep thinking what if it is an infection of sorts. I have it on my left eyelid too...it isn't psoriasis, not scales or plaques. Like sand paper. Hard little bumps, like blisters...when I scratch them they leave a hole. So, I have this pinhead size hole in masses...but they have scabbed over and now are healing...crazy...

Do you live by leaf bearing trees that turn in the winter...or with no frost is the change of color just dormant yellow, to brown to dead? Here, last year they changed, even had some reds, but two prior falls, then went just to dead yellow. Falls are ugly here...

I realized yesterday why I feel so like a cat in a cage, despite driving, going to the parks. It is because my eyes can only see short distance because of the landscape.. there is nothing. Flat, filled with trees. I miss seeing past the block, seeing the mountains above, seeing the water, The Puget Sound below..so much for the eye to see...besides the rear lights of the car in front of you or the next block of trees that block the sky view, what is in the horizon?

You don't see the sun setting or rising off in the distance, unless up on the highway bridges. It sets behind your backyards trees... I miss open, rolling hills filled with homes, the Cascades framing the city, the burbs, the city's skyline...water, lakes....Ones' eyes can see so far without an interruption of trees..anywhere, just like a postcard...

Driving through Seattle, to the East side...north..west...it is like a photo album, turning a page, a breathtaking view with each mile...and never the same. The view seem infinite, her in SC it just ends abruptly. Being such a visual aroused person...it suffocates my spirit. Soon, soon as soon as the market goes up.

I think to go visit, but I feel it will be such a tease and it would be harder to return to SC. My husband is talking about a skiing trip there...he loves Snoqualmie Pass. If I did need a dose of home, I would really like to go in May. I suggested Denver for a January holiday...or he set up a weekend trip to Denver with his colleagues as I don't ski...

The UP reminds me of a small version of Seattle....and I am so excited to be vacationing in 14 days...ooolala...Hats, scarves, boots...now that is reason to stay covered...the texture, the colors the warmth and not to hide...

Cheers to a feel good day..Happy Hump Day...Wednesday....I care about you too...hugs.


10-10-2008, 07:11 AM
Saysusie for your Lauri..Happy Birthday Lauri...

For you Saysusie..head hugs full of love...

Celebrate this day, her day...

Love you,

10-10-2008, 07:39 AM
Sweet, Sweet Oluwa;
I cried when I read your posts because I think you are soooooooo right and the realization hit me like a rock. Each year, I go through this. I think that it starts as soon as September and/or October approaches. Cognitively, I am not able to put two and two together until some caring, perceptive person (like you) draws it to my attention. I keep thinking that I will get through these months better, but it never fails; every single year...I get sick, go into a flare, and fall into a depression....it's like clockwork. Even when I don't realize what I am doing to myself, I still end up here!
Previously, once I've come to the realization, I know that I will not be fully functional until the year has ended (the Holidays are just not easy at all)!
Thank you so much for your birthday wish for Lauri. She would have been 33 yrs old today. I try to imagine how she would look at age 33...but I can only see her at age 24 or younger. Oluwa, I miss her sooooooo much and it just does not get any easier.

I had to chuckle at your process regarding the biopsy :) I am glad that you made the appointment. Please let me know what they decide to do and I hope they come up with something that will speed this healing along.

I have written to my doctor and asked her about the Lunesta. So far, she has been very cooperative with me once she realized, as she said, that I was an intelligent person who understood my disease! I won't tell you how long it took her to come to that realization...that's another story for another day (lol).

We live in the High Desert, one of the few places in California that actually has seasons. So, yes, I do get to see the leaves on the trees change and I do get to witness the beauty of each season. The problem is that, with constant growth up here, the seasons are getting shorter and shorter. I swear, it felt as if this year went from winter straight into summer and that we are going from summer straight into winter. That is not fun at all.
We are surrounded by the San Bernardino mountains and I can see them from my front door, back door, upstairs windows etc. I can see the snow on the tallest mountains like little white night caps on snuggling bears. When our mountains catch on fire (as they do every year), it reminds me of an old man lying down smoking a pipe. I need only drive South East for about 20 minutes and I am on my way up to the mountains. That is such a beautiful drive and I love to do it several times during the summer (as Victorville is always in triple digits in the summer) to cool off and be "somewhere that's green" (from Little Shop Of Horrors).
I'm sorry that you no longer enjoy the beautiful sights and sounds of nature as you once did. I can truly understand your urgent need to move somewhere that is good for your soul. That is so important and can have a much more significant affect on our health than we realize. I hope that your vacation does for you what mine did for me! Fourteen days sounds wonderful!!!
Have a wonderful weekend! I always put a birthday greeting in the newspaper for Lauri, so I am running out now to purchase the paper.
Thank you for being so sweet, so understanding, and so comforting...especially at times like this when I truly need it!


10-12-2008, 05:30 AM
God bless you, Saysusie, as you pass through this tough time of the year. You honor your daughter in the most special way - with this incredible forum; with your music. She must be smiling and nodding, so proud of you and feeling so loved. Thank you for sharing her with us. Hugs...prayers...good thoughts....all coming your way.


10-12-2008, 06:09 AM
Hi Saysusie,

I'm sorry that there are so many things causing you such pain both physically, and emotionally. I can't imagine how difficult Lauri's birthday is for you. And the holidays are never the same after you've lost a loved one, especially when that loved one is so young, with so many wonderful things ahead of them. It's an emptiness that can never be filled. I think alot about very close friend of mine who left us far too early, and I wonder what he would look like now too. I try to imagine it, but he'll always be 26 years old in my mind.

Lauri would be so proud of you, and all the good you have done for so many people in honor of her. Despite all the sadness, all the good that Lauri has inspired will alway be something you can smile about and look back upon with pride. And nobody, or nothing can ever take that away.


10-12-2008, 01:09 PM
Hi you Dear Saysusie...

I do remember your blues last year at this time. I wish I could say something to make it easier for you. I tried to find ways for me with my Momma. I get the big aching sigh. Head hugs...

I was just saying to my husband yesterday...oh, my Momma eats that (ice cream sundaes with Spanish nuts)..then realize I say a lot. Daily he says. My Momma, my Momma did this, my Momma did that...she use, she did, my Momma taught me this, she said this...and I never say it often about my Dad, sisters or brothers. I think we do it..to keep them alive...a way for them, my husband to met them, my Momma, know them like we do.

Lunesta...I was mentioning on another thread. I feel like my body slept, but you don't wake with that wow, oh, I feel so wonderful oh, this bed feels so great, I want to stay under the covers for another hours. It is like drinking water it quenches your thirst, but a Lemonade..or Champagne...wow.

Lunesta is like water. You sleep, get up. And because you sleep, wake without the lug..it makes it a great day. I do feel less pain...well, especially since I am starting to dose with 60mg of scaroids. But know I notice a quantum improvement before the Prednisone...

Finally was prescribed prednisone for my rash...it is stopping it in its scabby tracks. Elated!

Your home, location sounds beautiful...mountains..they call my name. It is a wonderful feeling when you can fill your eyes with snow tops.

Happy Sunday...

10-14-2008, 06:14 AM
Thank you so much for your sweet words & kind wishes. I often feel, in my heart, that she is happy with me. I do believe that I am not nearly as blue as last year, or the year before that, or the year before that. It's just that it catches me off guard each year because I think that I am going to be fine, and I'm not quite there yet. Being here, with all of you, is a big help to me and I think that it is a large part of what keeps me sane during these times. So, I have to say "Thank You" to all of you :lol:

I remember you sharing about your friend and I know how such a loss can leave an emptiness that can never be filled. Fortunately, I begin to dream of her often during these months and that truly, truly helps. It's almost as if she knows that I need her, so she comes to me in my dreams; sometimes at age 24, sometimes at age 6, sometimes at age 19, etc. I wake up feeling so much more calm on those nights when I dream about her. Do you often dream about your friend? I truly hope that you do.
Thank you, Rob.....for ALL that you do!

Sweet Oluwa;
Like you, I spend a lot of time saying, "Lauri once did this", or "Lauri loved this show", or "Lauri and I always did this or that.." I think that you are absolutely correct, it is our way of keeping our loved-one alive.
I went through years of therapy after we lost Lauri and one of the things that my therapist drilled into me is that; Yes, I should talk about her as often as I want and whenever I needed to. If there is anyone who does not want to hear me talk about her or who thinks that there is something wrong with the fact that I continue to talk about her, then I need to drop-kick that person from my life because THEY are the ones with the problem....not me. So, I say to you.......keep talking about what your Mother did, what your Mother liked, what made your Mother happy, etc. Keep talking about your memories of her. Don't be put off by anyone who does not want to hear what you are saying. Keep saying it, even if you are only saying it yourself...just don't let anyone or anything make you stop speaking your Mother's name! The bond between mother and daughter is a unique one that is so blessed. It is not the same as the bond between siblings or other familial connections. Your mother is in your heart. For you, that is where she lives. Since she is always in your heart, she is always in your thoughts - since she is always in your thoughts, she will always pass through your lips in the sweetest, memorable words. That is a tribute to her and a comfort for you. Don't stop.

Thank You All.....

10-16-2008, 07:56 AM
Hi you, Saysusie...

Just checking in....

Counting the days till..here I come UP. Flannel jackets, Alpaca hat all packed. Counting today, 7 days hitting I-26....

I need a vacation with family, faces, conversations from the sickly leisure woe is me life with IT. And I am making sure IT stays home...and if It decides to find its way into my baggage I'll snuff him out with a red eye beers and grilled brats.

Today, it is going to be a great day....I will make it that way.

Hey, hey..hey Happy Day...Hugs.

10-16-2008, 02:41 PM
Saysusie, I am sorry about your daughter, Lauri. Imnot sure if I remembered about her from last year. Not sure if I was even here last year. Come to think of it I wasnt. I didnt join til Nov.

My daughter would have turned 14 on October 4th. She has been gone 9 years now. The lastb irthday I got to throw her was her fourth birthday.
This time of year is always so hard and I like you dont feel any less pain until after the holidays. They are so hard.

Praying for peace and comfort for you and for me and grace to get thru the next couple of months.

Happy Birthday Lauri and Hayley!! These Mamas are missing you.

Hugs, Kasey

10-16-2008, 07:38 PM
I am praying that you, also, find some peaceful moments where Hayley's memories bring you some comfort. Come January or February, we will check on each other to see how we are doing after the holidays.

Sweet Oluwa;
I am looking forward to your vacation almost as much as you are :lol:
You deserve it so much and I know that you will enjoy the warm fires, bundled up clothing, and clean-fresh air!
16 days & counting

Peace and Blessings

10-19-2008, 09:41 AM
Hi Saysusie...

How's the day in Victorville...Summerville, Sunday, the air is crisp, the yard is full of tired worn out leaves. Here they don't change colors they just wear out and fall....

Hey did you get your prescription Lunesta...if so, isn't the after taste, in the morning awful. Makes water taste like wet pennies to me. I have licked Lincoln's head and tried dirt when I was a kid.

Rash is long gone....tapering down on the Prednisone. Five more days, but my malar is getting a deep red..wonder why?

Biking for two, yet? I haven't took mine for a spin as much as I had planned or as far.

Have the results from you MRI of your thigh come in yet? Praying all is well...mmm-m---m..good vibes and that your all over feeling is better than your norm. Say NO to inflammation!

We are leaving on the 22 and be back on the 3rd. I did absentee ballot just in case I was too worn to stand in line the next day.

:shock: Driving round trip for four days, I must be crazy. All for the animals...silly me, silly love?

Happy Sunday....enjoy each moment...
Hea dhugs,

10-21-2008, 02:40 PM
Hey you..Dear Saysusie...wondering how you are..thinking of you. Missing you. Emailed you too...

Tomorrow I'm off for my big adventure..UP....returning on the 3rd. See you when I get back...

Keep well...be well, Saysusie

Toodles..Love you.

10-21-2008, 09:51 PM
Sweet Oluwa;
I hope you read this before your trip. If not, I know that you've come home rested and peaceful. I am so wishing that you truly, truly enjoy your trip and that it fulfills you emotionally, spiritually, and physically.

Kaiser does not prescribe Lunesta, so my rheumy gave me Ambien. Tonight will be my first night trying it. I'll let you know how it goes.

The MRI showed fatty cells only (Thank Goodness). It has shrunk 1/2 cm, which is good news. We will do another ultrasound in 3 months, just to keep an eye on it.

Today (10/21) is my birthday (Lauri & I would always celebrate our birthdays together) and I actually had a good day. I had the sweetest dream about Lauri last night. When that happens, my days are always hopeful :lol: It helps, also, when all of my loved-ones call me and sing to me or tell me that they love me etc. So, this birthday was a good one (it was a long time coming)

Took the tandem out yesterday.....needs a lot of work (flat tire, broken brake line, etc.). We took it to the shop to get the repairs done. In the meantime, hubby and I are taking nice walks in the evening after dinner. Just as enjoyable as a tandem ride, for now.

I got your e-mail and it was so inspiring that I printed it up to re-read. Especially when you spoke about missing your Mom. So, a reply is forthcoming :roll:

I was surprised to learn that I had lost 15 pounds :cry: I have no idea why or how? My rheumy was not, in the least bit, pleased! You know with a history of ED, doctor's tend to ride you mercilessly about your weight! I know I was sick for a while, depressed for a bit, but I thought that I was eating. My hubby says, "no, you were picking and leaving 90% of your food on the plate, claiming that you were full". I really thought that I was full....but that all goes back to previous ED, I'm sure. I should have known when I put on a pair of jeans that once fit nicely and they nearly fell off of my hips (lol). Anyway, I am being watched like a hawk now and have to re-gain the weight. Ugh!!!

I'm glad that you enjoy my CD. It is very eclectic because Lauri's taste in music was eclectic. A little new wave, a little jazz, a little country, a little R&B......
I am finishing up my jazz CD & will start on my Christmas CD. Once they are done, I will put them online and let everyone know how to purchase them.

Do, please, have a wonderful, wonderful vacation. Come back to us rested, happy, and content! We'll miss you while hoping for the absolute best for you!


11-05-2008, 04:10 PM
Ahhh...I missed your birthday? Happy Birthday to you, Saysusie...Hugs, tight ones...g-r-r-r..squeeze. I am glad it was a great day. When my sister twins where toddlers, they would wake up each morning and say Happy Birthday Mommie...sweet, eh?

How is the Ambien working...I wish you could have tried the Lunesta...a whole different lights out drug. Out and then up...no residue.

You lost 15, I gained 8...You pecked like a chicken and I ate like a pig. I will give you my eight or did you find your 15?

And I got your email and popped one off to you today...

Enjoy the night, Saysusie..I hope you are smiling...

11-05-2008, 05:08 PM
Hey You;
Glad to see you back and in good spirits! No, I have not found all of my 15 pounds, but I did find 6. That's a start huh?
Hubby bought me ice cream (well, actually soycream 'cuz I'm lactose intolerant), pound cake, and chocolate brownies and has given me an ultimatum regarding weight gain. He sez my face is shrunken and I have deep black rings around my eyes. I hadn't noticed them until he mentioned it and yes, I look rather haggard. My face is not only shruken, but it looks as if it has fallen :lol:
I would gladly take your 8 pounds if I could. But, at least my appetite has returned to normal!
The Ambien is working satisfactorily. I am getting to sleep and seem to be getting restful sleep. That is more that I had been doing, so I'm satisfied for now.
I haven't been into my e-mail yet, so I'm asking you here if your vacation was as wonderful as you hoped it would be? Are you rested in body and soul?
We've missed you here and it is so good to have you back!

Peace and Blessings

11-10-2008, 10:08 AM
Hi you dear Saysusie...

Enjoyed Disneyland? Gaining the other pounds with food on a stick while there? Have you had any lab work done to find why the weight loss?

I felt rested and swollen when I came home, but since weaning off the steroids I am worse than my norm...

The Lasix did wonders for the water retention, just popped another as my eyes are getting puffy again, I feel the layer accumulating.

My weekend was dull, and well, so was I...I was dormant, hibernating, hiding from the world. If I didn't have lab work today I would hide another day.

Here's to healthy, well, better days...


11-10-2008, 12:45 PM
Feeling any better Saysusie? Holidays are hard when love ones we miss are not around anymore to share them with. I do understand. I almost called my niece to see if she was coming with me or her mum's for thanksgiving. Then I remembered of course, my first holidays without my miss bubbly :cry: . Just last year I had to learn to go thru this time of year without my sis and 2 nephews, it was so hard. Now without my dear girl, I don't know what to do. She would always come with me to my mum-in-law's when she could, we sneak bites behind her back :lol: . I was so excited to tell her this was my first year at my own home, I'm sure she's smiling though because she knows. I do miss her, more than words can say. God bless us all thru the holidays.

For your weight, how about creamy pasta? Any you can have or make that's lactose free? I know cream or cheese sauce noodles goes straight to my waste and scale. Maybe more bread products at each meal? Hope you feel better soon and gain a few pounds. Have mine, please :lol: .

11-10-2008, 11:32 PM
Finally answered you e-mail..sorry it took me so long. Disneyland was wonderful. However, three old ladies just can't do what their mind keeps telling them that they can do!!! We had to all laugh at our complaints about our backs, our feet, our hips, and..."oh no, I am not standing in another line!" Took the train ride around the park 4 times, just so that we could sit down :lol:
But, we stayed until fireworks both nights. Went back to the hotel to drink our fruity drinks with umbrellas and whatnots :lol: . Stumbled to our room to talk, gossip, laugh, and pass out from sheer fatigue.
I ate, and ate, and ate....gained....................ZERO!!!!! I feel like I've lost a little of what I gained, too scared to get on the scale. What a bummer. I have an appointment with my endocrinologist next Wednesday. I am thinking that my thyroid has gone bonkers again! Hopefully, I will have answers and solutions then.
I like the fact that you spent the weekend just "chillin", I hope it was not because you were not feeling well. Even if it was, I'm glad that you took the weekend to just hybernate! I think that we all should do this, at least two times per month!
How was your lab work? Every time that you wean your Prednisone, your start to feel bad. I really wish that you could find a dosage that keeps you stable and doesn't beat you up with side effects.
Hope your night is a peaceful one and that you wake up feeling less pain and more lifted spirits!


11-10-2008, 11:40 PM
I can understand what you mean about missing your sweet girl, especially this time of year! My friends are so sweet and they do so much to try to keep my spirits up when the Holiday season starts creeping in on me.
I miss the daily phone calls we had making plans and planning shopping excursions. Well, I just miss everything about not having her here.
My husband and I are still not able to "do" Christmas. We go away every year. My family has to understand that we just are not able to "do" Christmas the way we had when she was here! It holds no joy for us any longer.
I hope that you are able to find some moments of quiet joy knowing that she is always with you. I hope that you are able to find some joy in these holidays and not be like me! You are always in my thoughts and thank you for keeping me in yours.

Peace and Blessings

11-11-2008, 08:58 AM
Dear Saysusie...

Oh, I am so glad you had such a wonderful time with the girls. Much needed, eh? I've never been to Disneyland or World. Just Sea World in Orlando...Shamo.

Ate and ate, zero gained....only a good thing when nothing wrong is involved. Do you have to take medication for hyperthyroidism? I was borderline low...when tested but wasn't "diagnose" with hypothyroidism. I consume 1000 or less calories a day. Average about 800..anything more I grow and rapidly too.

I can't imagine your beautiful face looking haggard.When we feel we look haggard sometimes a new product can brighten, lift our skin. I found colorescience...from my sister has a great line for face care, correctors. Check 'em out.. http://www.colorescience.com/1280x1024/flash/index.html I use the pep-up, eye and lip serums, liquid foundation and compressed makeup..I notice a big difference in my face...

I fell out yesterday, just for a minute and clocked several hours sleeping away after my shower, so no lab yesterday. I will combine my lab work with my dermatologist appointment on the same day, this Wednesday. Hope they can save my day...this rash is causing my skin to feel like wet, swollen grains of wood where the board was cut.

My home remedies are not working. Just lathered with T/Gel shampoo, coal tar all over my body in hopes it would provide relief. Nope, least not yet. Next Evening Primrose Oil...

There just has to be something. I feel like peeling my skin as if I was a potato.

Probably just allergic, to something aggravating the eczema..I am consuming...

I've been more exhausted than my usual. Yearning for my down comforter and quilted blankets and fulfilling that hunger with hours in the dark. And my bland thoughts have kept me hibernating.

Where are you going for Christmas this year? Us, probably to Florida and spend it with my Dad. That is only a six hour trip...but I still feel leary about another after how I felt when I got home from the UP and stopped the steroids. If it wasn't for the Prednisone, dosing while there I think my time would have been a disaster. Cheers to a pill...

Enjoy this day...I plan to too...

Love and hugs,

11-11-2008, 02:04 PM
Hi Saysusie, thanks for your reply. I can understand you taking trips, wish I could. My kids keep me going, make me "do" the holidays. Since she was actually my sister's girl, I'm forgotten of my pain. Completely understandable, no complaining here. I look at my kids and just can't imagine what it must feel like. She still felt like mine though, specially the last few years. Her growing up, she came here a lot. She said I was the only relative who spoke to her as an adult, not a child. Had to remind her that it was hard for others, specially her mum and grandmum, to see her as anything else just yet. Still can't eat the chocolate icecream syrup without her. Good for the waste line though at least :lol: . Glad you had fun with your friends at Disneyland. I live 2hrs away from Disney World and still have never went. I want to make an effert and try some year soon.

Hi Oh, coming into my state at christmas I see. Where at? I live in central FL, temps not too bad around christmas most years. Cold, but not too cold. Further south where a few relatives are say its real comfy there that time of year.

11-17-2008, 09:16 AM
Hi you, Saysusie...

How was your weekend...enjoyed or healing? I hope it was a wonderful weekend.

Finding the pounds you lost...I am missing nine now. Woohoo, as mine was unwanted. Four to go. Hopefully your appointment Wednesday will reveal something, so you will know how to treat it. Unanswered, undiagnosed to me is worse...you too?

I broke through my dark cloud and I am not only feel the sunshine on the outside, but I am beginning to feel it bursting inside. Thank you for your encouragement, your kindness on the other thread and everywhere.

Have a wonderful day..hope you feel good.


11-17-2008, 09:26 PM
Saysusie, I'm so glad you had a good time in Disneyland! Wish you had returned with the missing weight, though. Still, sounds like the trip was a success in the relaxation department.

My heart aches for you, Saysusie, when I read about missing your Laurie at Christmas. And for you, too, Cheryl - missing your sis and family, and your dear niece. Hugs and prayers to you both.


11-18-2008, 12:10 PM
Sweet Oluwa;
Bad news on the weight...another 3 pounds gone, and I had just gained six! Poof! Just gone :( It's like I go to bed with the weight and during the night, someone has stolen it from me. So, I am getting a bit concerned and have not mentioned it to my husband. I purchased a gallon of Soy Ice Cream and have been eating it every night! I will see my endocrinologist Wednesday. I'm not sure I want to know what is going on, but at the same time...I want to know what is going on!!
However, I am happy to hear that you are losing your unwanted pounds. Do you think that you could package them up and send them to me? I'll take whatever you can give :-)
Yes, I am taking medication to control my thyroid. I'm hoping that I will just need a dosage modification. My weekend was quite nice...we went to see the new James Bond movie on Friday (I am a Bond fanatic) and it was a thrill ride from beginning to end. Also, I went to my book club meeting in L.A. on Saturday, but due to the fires, the freeways were shut down on the drive home. So, what should have been a two hour drive home turned into 3 1/2 hours. Needless to say...I had to take all day Sunday to recuperate.
Oluwa; there has to be SOMETHING that can be done to relieve you from your skin rash! I know you've tried everything to no avail. But, I just cannot believe that your dermatologist and you rheumy cannot put their heads together to find a way to help you. You've suffered with this for so long and you've been so patient! I can't understand why they've not been able to come up with an adequate treatment.
I can understand your total exhaustion and your need to just hibernate! Just as I can understand your frustration, your anger, and your feeling as if you just want to scream!! I am screaming for you.... "TAKE THIS AWAY!! I'VE HAD ENOUGH, JUST TAKE IT AWAY!!!" You are right, there just has to be something! Please let me know how your appointment with your dermatologist goes on Wednesday. I hope you insist that he or she do something, give you something, recommend something, refer you to someone that ACTUALLY HELPS.
You are in my heart.......


11-18-2008, 12:30 PM
I had to smile when you mentioned that you could not eat chocolate ice cream syrup without your niece because I feel the same way about banana splits. Lauri and I had our own special banana splits: 3 scoops of chocolate ice cream, covered with chocolate syrup, sprinkled with chocolate sprinkles, a dusting of crumbled Oreo cookies, and topped with a sliced chocolate brownie. We called it our "Chocolate Overload". Every time we ordered it and ate it, everyone in the establishment would look at us as if we were insane! We'd laugh our hearts out as we ate the entire thing. I haven't had one since 1999.
We only had two children and Lauri was the baby. Her older brother has been on his own since he was 19. So, Christmas was always about Lauri and how she loved to celebrate it. Our son would come home to spend Christmas with us, but the planning, decorating, shopping, and celebrating was all about Lauri. Our son, her brother, truly understands our inability to "do" Christmas so he spends most of the Holiday with his girlfriend and her family. He tells us not to worry or feel badly, he is just fine and he could not celebrate as we used to either.
Even if your family forgets that you suffer from your niece's loss, please know that I hold you in my thoughts during those times (like the holiday season) when you miss her.
My husband and I are contemplating either going to Palm Springs or Las Vegas for Christmas (Lauri's husband is in Las Vegas & we often go there to celebrate with him & his family). We've not made a final decision yet. It comes down to deciding if we want to be completely alone or do we want to be around others.
I'm happy that your children are able to help you have a joyful holiday season, even in the midst of missing her. :lol: Thank you for your understanding words.

Peace and Blessings

11-18-2008, 12:34 PM
Thank you for your post :lol: The years do not make it easier for those of us who are missing loved ones. It just helps us to deal with the loss differently.

My friends are always my strength and I actually thank God for them every day. I include my friends whom I've become attached to here at WHL in those thanks :lol: This family is such an important part of my life now.

Peace and Blessings

11-18-2008, 12:43 PM
It has been so long since I've had a chance to catch up! I'm jumping into this on page 8, and have missed all the story up until now.

Saysusie - how frightening to keep losing weight. I know so many say "dang, wish I could do that!" but really - when you don't know why..... just keep eating that ice cream! However.......I find if I eat a lot of soy (and I LOVE edamame!) that I have some issues. Seems to set whatever hormones this 56 year old body makes into a tizzy. Might want to try some rice milk ice cream or almond milk ice cream and see if it has a different effect? Maybe the natural estrogens in the soy are having some effect and helping that weight melt away?

Hugs, dear Oluwa - I thought that skin issue had been clearing up! Or maybe you don't want hugs. A good scratching might be more to your liking? Wish I could offer something to help...

Christmas will be weird for me as well this year - my mother is now in a nursing home, skilled care, as her Alzheimers has just started running away with her. It is so sad. Over the summer we were talking and laughing. Now the last time I talked to her on the phone she wasn't sure where to talk into, much less who was on the phone. She has no idea what day or week it is, so if we do go visit (3 hours drive away) over the Christmas holidays it will be whenever weather permits. My sister is going to a relative's house in Florida for the holiday. So it will be odd. And a bit sad.

We may or may not go down over Thanksgiving, depends again on weather. We'll have my SO's sister and son over, so just the 4 of us. Thanksgiving in my family used to mean renting a hall - there would be 60 to 70 of us, all aunts, uncles, cousins..... lots of food, lots of laughter. So different this year! Being a "grown up" ain't all its cracked up to be some years.

Hugs to all of you, so good to hear what's going on. I'll try to check in again every day, but work has been....BUSY! Benefits time of year and lots of projects on top of it.

11-18-2008, 02:25 PM
Hi you Dear Saysusie..

Wouldn't that be lovely if we could just package our fat off and share.

I do hope that it is just a tweak of your prescription. Tomorrow you will find out, eh?

My dermatologist appointment was last Wednesday. I was prescribed Clobex, a super potent steroid cream, along with Cerave a heavy duty moisturizer...which is working. Prescribed for 4 weeks...Humm seems like I wrote this to you somewhere...maybe in our emails? Okay who is having the brain fart?

I hope when the bottles are empty the rash will not reappear. He thinks maybe Plaquenil or Protonix is the culprit..allergic reaction.

You did have a wonderful weekend. Joy, joy!

Hugs with love,

11-18-2008, 02:28 PM
Hi Hatlady...

Thank you for the hug..no scratch needed, yet..anymore. Yep..you are right, the prescribed regime from last weeks appointment is working...

I am so grateful for that bottle....

I was going to put out an APB on your tonight or tomorrow..and here you are...hugs.


11-19-2008, 10:54 AM
:oops: sorry I've been bad!

You are so sweet to worry about me, Oluwa, I appreciate that! I'll try to check in at least once a day if I can.....

Hugs to all - -

11-19-2008, 09:27 PM
Hi Saysusie, thanks for thinking of me with your pain and emotions. Touched my heart :D . When my niece lived with me, she busted me with the jar of chocolate. Every saturday nights my hubby watches rented movies in the living room, and I'd take a novel to our room to read. It was our personal retriet night. To relax and do our own thing. Well I sometmes get a strong urge for chocolate, really bad cravings. One night the icecream topping chocolate was all I could find and became part of my saturday night retriet. Never did tell hubby. Was sitting in my room reading a book one saturday night and she snuck in to scare me (takes after her aunt and uncle, we love to do it to the kids :lol: ). Well she seen what I had and melted into her cute little smile, telling me how I was her "favorite aunt". Well how could I resist :D , of course I let her. She had a novel too it turned out, she thought I was watching tv in my room. Didn't know I was reading too. Turned out we loved the same authors and it became "our" saturday night thing. We would carry 2 spoons and a new jar with books in hand, hubby joked he felt kicked out by double-trouble. Her mum joked you think she was my daughter, not hers. Loved outdoors, music and books like me. Nothing like her own mum. She may have moved out years ago, but we would still do our saturday thing in our own homes and call and catch up on the novels we chose for that night. Saturdays have not been the same in months. I just can't open that jar and now I read in the living room with mp3 and headphones. Even though she hasn't been here on a saturday night for years, those nights now are just not the same. Those memories came back so strong that first weekend after, and still are.

Thanks for letting me say that, it felt so good. I actually smiled with only a few tears this time remembering. Better than the usual crying that happens when I remember. I wanted to remember, but it was hard to make it thru the memory. Thank you, some how you gave that back to me tonight. I do love the banana split thing you two had, thanks for sharing it with me. May we all make it thru the holidays, for whatever reasons we need help in. God Bless us all :D .

11-19-2008, 10:02 PM
I'm glad that you were able to tell the chocolate story with a smile and less tears. Everyone keeps telling me (and I'm sure, you also) that I should remember the "good times". I do, and it is those memories that break my heart the most.
But look, you and I were both able to tell our stories about one of our most memorable times with our girls; and we managed to do it with smiles.
Like I said....we will support one another through this Holiday Season and, see, everyone else is here supporting us too!
We may never eat chocolate syrup or banana splits, but we can try to smile every time that we think about them :lol:

Peace and Blessings

11-19-2008, 10:05 PM
Oluwa :lilangel:
Yes, you did tell me about the new cream and the moisturizer in one of our e-mails. For some reason, I jumped to the conclusion that they were not working. So, I got on the defensive, in your behalf, and was sooooo ready to throttle your doctors!!!
But, I'm glad to hear that they are working! So, hopefully when the bottles are empty.....the rash will be gone. Then we can say "Good Riddance!" :P
Hope you have a peaceful night!

Peace and Blessings

BTW. My doctor sez for me not to worry too much about the weight loss. I have not gone below the minimum weight for my height. Since I am so tall, she does not see the weight loss as a problem right now. If I lose 5 more pounds, I will be below the minimum and then we will look at adjusting my medication. If the weight loss becomes totally uncontrollable, we will take steps at that time (not sure how much more uncontrollable it can get...but OK!)

11-19-2008, 10:09 PM

WZUP!!!!!!! I am always happy to see your posts. I know the job has been keeping you busy, but it is good to hear from you!!
I hope that you've been well. I am sorry to hear about your Mother and I know that this Holiday Season will be different and a bit sad. Please know that you are always in our hearts.

Thank you so much for your kind words. I am going to take your advice about trying the rice cream. I did not know that the Soy was probably not giving me the results that I wanted. Thanx!

Hope to see/read you soon!

Peace and Blessings

11-20-2008, 06:41 AM
Hi Saysusie. Yes its true, the good memories are the most painful. I did realize last night that I rather remember and cry than trying not to remember due to the pain in my heart. One step at a time as they say, apparently so true. Thanks again for sharing, I think that's what got me remembering. Its a good day, I feel her smile on me right now. I have no idea why, just do.

Hope eveyone's having a good day!! I feel great today, going to enjoy it while it last. A friend is visiting, one of the kids from long ago I watched when he was young. Was my niece's friend, ironic. Good to see him here, were going to spend the day listening to music and eating and catching up.

11-21-2008, 12:37 AM
Hi you, Dear Saysusie..

Happy Friday..I have insomnia. Slept the day away with Zrytec. My body decided to bust out in hives. Red, hot and eraser size..covering my arms, legs and neck..Whas up with dat? Well, least the trunk rash has left the carcass.

No hives where the Clobex was spread...

By morning you could be five pounds under. I am at a stand still and my regular size pants are tight. Not a good feeling. It could cause a starvation mode...ED.

It has been so cold here..low 30's The lawn in the morning was glazed white. Many mornings lately. Many of my plants fell to winter's cold air. Elephant ears, Ginger...Hibiscus, Hostas...they will return next year. I'll cut them back tomorrow...

My husband lands today, Friday midnight. Wasn't a very productive week for me...and how was yours?

Enjoy the weekend...hugs...

11-21-2008, 05:26 AM
Hi all;

Productive week for me, but too dang busy and a bit frustrating. Some individuals need to be told WHY 17 times, and even when you say "the law says" they STILL ask WHY?!?! So I try to say it again, differently, and not act frustrated. :twisted:

Today will be more fun, the work "gang" is going out for lunch, so we'll share some laughter and get away from the hassles for a little while.

Oluwa, you poor thing, first rash, now hives. Saysusie, I hope the rice-cream tastes wonderful and helps you feel better!

It is frosty cold here too - in the 30's today (fahrenheit, for our international friends). I like the cold, easier to stay out of the sun when you're bundled!

We're going into a week of frenzy for some of us, memories for all of us, and changes to traditions for others. Let's take a moment to hold hands around our world here - and give thanks for each other, for this board, for our lives and hopes and dreams.

I'll try to find something today for the Faith and Fellowship board - and I thank you all here as well!

11-25-2008, 06:02 AM
Cheryl and Saysusie, you are both in my thoughts this morning - and prayers. Holidays are so filled with memories and family is what they are all about. I know you miss your girls deeply when special days are near. It was so touching to read your special recollections of your times together. Tender hugs to both of you - and may your memories all be warm and happy.

Oluwa, how's the itching this day? Hives fading, I hope. Turkey day soon, and I know you're doing a big meal. Will hubby be home for a while again? It's cold here, and frosty, but warmer than last week (no single digits.) Freezing rain this weekend, but now a dusting of snow. Doesn't look like Thanksgiving, though. Usually, we have a little snow to kick around in - this year, just a touch.

Hatlady, it's good to see your posts. I've been absent myself - not up to par, and not feeling a lot like communicating. Just had to jump back in and reconnect. Hope Thanksgiving gives you a nice chance to wind down.


11-25-2008, 07:22 AM
Jody - good to see you too!

What a wild time of year. We all have so many memories that threaten to crowd out what happiness there is for THIS year. It is hard sometimes to focus on the present - and the joys it can bring.

For me, this year is bitter with the sweet. No pressure to go to my Mother's for a family gathering - she is lost in Alzheimers, so I'll go down sometime over the weekend and visit for a bit. See my sister, maybe a cousin or two. That's all. I miss my mother - it went so fast. Often with Alzheimers there are good and bad days for a long long time. She was good this summer, only occassionally missing a beat. Now she sometimes doesn't recognize her own daughter - my sister, the one who is there almost daily.

We'll spend the holiday here with my SO's sister and nephew - different, after many years of as many as 65 at a rented hall, or 20 at our dearest friend's house, it is odd to be just 4 around the table. Don't know how to cook that "small!" So there will be leftovers. The sweet part - it will be time to share with just the 4 of us. A chance to visit more than usual, which will be sweet.

Saysusie, my dear friends are now out your way - they moved to San Diego, where their work took them.

I've been busy with work, it is benefits time which means literally hundreds of people filtering through the office asking questions, turning in forms.... so very tired each night. So I've been a bit achy, headachy,but nothing that is unmanageable, thank heaven.

Hugs to all, warmth and fellowship. Be well, and I'll check in again over tho holiday.

11-25-2008, 09:05 AM
Saysusie and Cheryl I am there right with you. My emotions are all over the place. My sweet Hayley was only four when she went home to Jesus. My heart aches so for her. We have tons of videos and pictures. I have not been able to watch the videos or look at the pictures. Its been nine years. She was such a spunky little girl. Not a frilly little girl. She was more of a jeans and t-shirt little girl with her pink baseball cap on backwards and a chunk of hair peeking thru the hole.

When I would take my older daughter to Co-op and clarinet lessons Hayley and I would go to the pet store. We would look at all the animals and talk about them. One day she spied with her little eye a little fishy in a bowl. She says to me oh Mama there is my fishy. Well being the Mama of that precious little girl I bought her that fishy. She named him Pouncer.
I really miss those days.

This time of year is so hard for me. I always get so sad and depressed. I do just enuf for my living children that they are not short changed but my heart is really not in it. Im just waiting for it all to be over.

Oh Hatlady, are you here? Gotta story to tell you. I discovered a while back that Wal-Marts flourescent lights are very bothersome to me. So I decided to wear my hat. I had bought a wide brimmed hat last spring.
Well HubbyMan and I were at Wal-Mart last night and I had my hat on. I wore it all thru the store riding on the scooter. Yea people looked, people stared at me and yea I was a bit self conscious but just carried on with what I was doing. I actually participated with the grocery shopping. Usually if I go I just follow him in the scooter if I even go, which has been a very rare event.
Anyway on with my story. HubbyMan called me the hatlady.
I thought of you immediately and told him about you and that it was because of knowing you and your hats that I got mine.

So did your ears burn last night? :P


11-25-2008, 11:09 AM
:D Oh Casey how funny! Wondered what that warm feeling was around my earlobes last night... :wink: When they give you a weird look, just smile, hold your chin high and scoot right past them.

Hugs to you for your sweet memories of Hayley, every time you walk past a pet store - I'm sure you smile a little and think of that day.

Cheryl, Saysusie, Casey, and all my friends here... Memories are a blessing - finally. Some days they feel like a curse, but the edges finally soften and the warm glow returns. May all your memories bless you this year.

11-25-2008, 05:43 PM
Hi All;
Back from my brief vacation and so glad to be home. :lol:

I'm with you. Having good days feels so wonderfully productive and we take advantage of those good days as best as we can! I'm happy to hear that you are finding more and more good days!

Sweet Oluwa;
Your rash has become my nemesis! It's like a bad penny that just keeps showing up. I'm glad your hubby is home for a bit, that always seems to brighten your spirits! I'm glad that the rash on the trunk is at least, gone and that there are no hives where your medication was spread. Small incremental successes huh?
I am enjoying the cold weather and trying to stay bundled up as much as I can. We were in Palm Springs over the weekend and it was 82 degrees there! I was glad to get back to cold Victorville :P
Hope your week is going well so far. Try not to go into the starvation mode...I've been there, done that.....causes more harm than good. Hang in there sweetie and know that I am here for you.

Thank you, always, for your kind words, your thoughts and your prayers. I truly appreciate the tender hugs :D

I know exactly how you feel when you say you just want the Holidays to be over with. It does not matter how many years we've had with our much loved ones, the hole in our lives is just as big if it were three years or twenty-four years. We thoroughly and relentlessly miss them!
So, it is quite normal for our emotions to be all over the place right now. Just know that we understand and that we hold each other up in our hearts, in our thoughts and in our prayers. I hope that your memories continue to make you smile.

Peace and Blessings Everyone

11-25-2008, 09:47 PM
Thanks Jody and Casey and Saysusie. Sorry for your pain as well Casey, such a young age. Memories are painful and wonderful at the same time. We will get thru this, quickly I hope.

Hoping everyone is having a good thanksgiving week. May we all have good memories this week and make it thru fine. Thinking of all of you guys and wishing you well :D .

12-10-2008, 05:29 PM
Dear, dear Saysusie...

Thinking of you today, December 10...I hope you are able to celebrate your sweet Laurie's life, fond memories...and her life up above and not her passing today.

There is no way to lessen the sorrow of losing a sweet daughter, but know..... others care very much and wish you strength and comfort not just today but always..always.

I wish I had some wonderful words for you today, my friend...Head hugs...squeeze!

Love you bunches,

12-10-2008, 07:26 PM
Hi Saysusie,

I don't know the story of your loss, but I am truly sorry that you have had to experience something that is feared by all parents. My angels go to you today, my dear. thank you for all of the incredible knowledge that you share with this group.

You touch the lives of many,

12-10-2008, 08:39 PM
Had to pop in to wish you well. God Bless you on this day, understand the pain to well. Thanking of you.

12-10-2008, 09:22 PM
I am new and thinking of you today and thankful for you and all you do for us. I hope you find some sense of peace tonight.

12-11-2008, 03:45 AM
You are always in perfect timing when I am feeling the loss of my angel. Today was an up and down day, actually. I had many moments of sweet memories which were sprinkled with the aching loss. But, all in all, today was a day of fond memories and so much gratefulness; grateful to have had her in my life for 24 years and knowing what a remarkable person she was. I am unable to sleep because she keeps sweeping across my mind in the most warming ways.
Thank you so much for your loving words :lol:


12-11-2008, 03:49 AM
Donicao1, Cheryl_v, and Mountaindreamer;
Thank you so much for remembering and for your kindness. All of you are such giving people and I am honored that you share yourselves here.