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SonyaLA
08-07-2007, 07:17 PM
Hey,

Anyone else taking Tramadol for pain? I had liver failure in January, and so I'm off most over the counter stuff. I can take Aleve, which doesn't really help much with the pain. Tramadol does help, but it keeps me up at night with a roving itch. Has anyone else had this effect?

SonyaLA

Nekhbet
08-07-2007, 11:53 PM
Sorry, no experience with that - I have had to take it though.

It is my favorite (stronger) oral painkiller so far. It was the only one that didn't make me vomit (at least not right away). After a few days codine, digesic (especially digesic), etc make me vomit- constantly. Expecially after food.
The tramadol only makes me vomit once or twice a day- and often 6 hours after food rather then within the hour. Gross, but much better :P

Oluwa
08-08-2007, 05:43 AM
Hi Sonya,

Yes, I do get the itch from Tramadol. What I do is take Chlor-Trimeton with it at night. It is a 12 hour allergy OTC.

Benadryl also worked, but left me feeling droggy and groggy the next day. Claritin didn't really resolve the itch issue.

Ask your doctor if it would be a choice for you.

Be well,
Oluwa

Oluwa
08-08-2007, 05:45 AM
Nekhbet,

There is a prescription drug that helps with the vomitng, but I forgot the name. Have you tried it? If not, ask your doctor and see what he/she thinks.

Be well,
Oluwa

Sweet*T
08-08-2007, 09:27 AM
I also take Tramdol and have had no side effects from taking this medication. I think the medication for nausea is promethazine--I take that once a week when I take my methotrexate.

Nekhbet
08-08-2007, 05:22 PM
I have tried metaclopramide (sp?) and erythromycin. Neither have helped at all. They do increase gastric emptying though so you get more nutrients from food through before you are sick..

SonyaLA
08-08-2007, 07:32 PM
Thanks for all of your answers. I can take benedryl, so I will try that tonight. I have allergies, and take Claritin D 24, but it does not seem to make much difference.

Thanks, Sonya

Oluwa
08-09-2007, 08:49 PM
You're welcome SonyaLA.

Did the Benadryl work?

Be well,
Oluwa

Nekhbet
08-10-2007, 03:26 AM
When I have had allergic reactions to medications that involved a hive type rash- I always had to take the maximal dosage of the strongest antihistamines I could get and it would still only take the edge off. Unfortionatly allergic skin stuff doesn't respond well to antihistimines. I'm not sure if it would work with *only* itching but I wish you luck and let us know how it goes..
:D

SonyaLA
08-10-2007, 03:46 PM
Well, the benedryl helped a little bit. I do think I slept better. My legs itched some, but it wasn't constant. I noticed the rash on my arms has eased a bit. I didn't mention the rash earlier, well because I always have one somewhere or other...

The heat here in Florida (well actually most everywhere) is hitting 100 degrees, and I need the sleep at night to beat this fatigue.

I'm going to keep up the benedryl for a few days.

Thanks Everyone,
Sonya

Oluwa
08-13-2007, 08:52 AM
Hi SonyaLA,

I am happy to know it has helped a bit. Maybe try an oatmeal rinse too before bed.

Oatmeal rinse is what I used when I broke out in the hives and rashes to tame the itch. I put oh, about a cup or two of oatmeal, uncooked into a pitcher fill it with water. Let it get milky looking.

After I take my usual showering I would rinse my body off with this milky oatmeal water, don't rinse off...pat, towel dry.

Save the oats and refill pitcher till next showering...

You can warm it bit, by putting it into a container with lid and while showering leave container on the tub floor and the shower water will warm it. Or make a new patch before each showering with warm water not hot. You don't want to cook it.

Do you bruise easily from itching? Goodness I do. Looks awful, especially from the chiggers bites we have in South Carolina. Mean bites and they itch for weeks intermittently. Nothing stops them from itching.

We live on the edge of a wetland and having a pool installed recently has stirred them up. I hope they go back into the woods soon.

Be well and keep the nails short,
Oluwa

SonyaLA
08-13-2007, 11:42 AM
Oluwa,

I'll try the oatmeal. I do use Aveeno on my arms and legs, it helps. The itch I get from the tramadol is sort of a roving itch though, that does not seem all that connected to the rashes I keep. It's like my skin is alive.

You mentioned bug bites. It reminded me of something I haven't seen anywhere else on this website. In the years since I have been diagnosed, (about 3 years) ... I've somehow become less than tasty to bugs. I grew up in Florida, so I was constantly tormented with mosquitos, fleas, biting flies, gnats.. anything. I'm not sure if it's because I'm so anemic, or if the drugs in my system do it, but I'm rarely bitten by anything now. I have cats and dogs, and even though we keep them treated, it's impossible to keep fleas gone completely. I've watched a flea jump on my arm, nuzzle in, and then just jump off. I'd be insulted if it wasn't such a cool side affect. Don't get many of those...

Sonya

Oluwa
08-13-2007, 11:59 AM
Hi Sonya...

In my mind I knew you were talking about the roving itch from Tramadol, but why I went on the oatmeal speel for rash and hives only Lupus knows.

I get the itchy feeling on my face, nose, chin too from Ultracet...no rash.

Do you get the roving itch, coming alive feeling when only dosing with Tramadol? Had you stopped and seen if it stopped? I have Restless Leg Syndrome (RLS) and that is a symptom, crawly, alive, tingling...though I do not have that particular symptom.

My legs ache as though they just went through a gazillion charlie horses. The weakness and tightness afterwards that I would have to flex my foot up and twist my legs together and rock myself to sleep. Being diagnosed as RLS, I was prescribed Requib. Viola, it works. No more pretzel twists with the legs.

Maybe try a Spanx bodysuit...

Be well,
Oluwa

SonyaLA
08-14-2007, 08:53 PM
Oluwa,

I've watched those commercials on RLS and thought that was me! I stopped the tramadol for several days, and it eased a bit, but my legs were still so restless. There are some nights I can't seem to settle at all, and my legs just drive me crazy. I've also started getting flutters in my back .... not painful, but like little strokes right above my kidneys...

I've noticed that when I take the Soma my legs ease a bit. I started back on the tramadol tonight since I've been walking around hunched over, my joints really screaming at me. I'm sitting here itching as I type. I'm about to go take the benedryl or I will never get any sleep.

I see my rhuemy in a couple of weeks for my labs review. I think I might bring up the legs.

Thanks, Sonya

Oluwa
08-17-2007, 09:19 AM
Hi Sonya..

Do bring up the legs to the doctor. I go to sleep much faster and sleep pretty sound. Though lately I have been waking up every two hours but not because of the legs. Don't know why.

Maybe because of all the medication I take can cause drowsiness so it is like a forced sleep, but not a really restful sleep. More like a passed out one. When I wake up every two hours I am still tired but I can't go right back to sleep.

All this waking up leaves me dragging the next day. No more bursts of energy lately.

Since dosing with Plaquenil many of my symptoms have subsided. I am so greatful, but...I wish the fatigue would disappear. Still working on that with the current advice from my Rheumatologist..supplementing with 200mg of CoQ10. I hope that works. I am wondering am I really fatigued, droggie from the meds or just tired from the interrupted sleep. Gosh I forget how to tell the difference as I have been walking in mud for years...

Rub don't itch...enjoy the weekend,
Oluwa

SonyaLA
08-18-2007, 12:02 PM
Hi Oluwa,

I'm not due back to the doc until 09/03. The legs are quiet at the moment... I'm sleeping through the night.

I've wondered about the fatigue myself. I am sleeping better lately with the Benedryl. I've found the generic doesn't work as well as the brand pills. Maybe because they are capsules instead of tablets? Anyway, I'm feeling less fatigued in the mornings. Of course I am also taking Soma and Tramadol at the same time. In the morning, I'm on plaquenil, but a lower dose, ( it was making my hair fall out) and only on 10 mg of prednisone right now. My doc wants me to lower that to 2.5... but it's hard.

I'm really hopeful that the heat eases, and I can start living somewhat normal for the next few months. I might be able to stop taking prednisone which would be great.

We are headed to Cocoa Beach on Sunday, so I'm getting out the beach umbrella, big hat and making sure I stay in the shade. It's our last little hurrah before school starts on Monday. My girls are very understanding of my limitations, but I try to let them live as normal as possible.


What is CoQ10 ? Is it prescribed, or over the counter? I haven't started much yet in supplements except for the multi-vitamin and extra calcium and vitamin D chews.

You have a good weekend as well!

Sonya

Oluwa
08-30-2007, 03:48 PM
Hi Sonya..

And how was Cocoa Beach. Sorry, this thread got lost in my head and thus resulting in a late reply.

CoQ10 is a supplement, OTC..it is supposed to help with my fatigue. Quite expensive for a few pills. I haven't felt a lift off yet. I will continue till my next visit. If nothing changes I will seek something new.

Last night and into the morning I itch everywhere. In the ear, behind the ear, even my nostrils how weird. Took one then two Chlor-Trimton before it surrender and finally went to sleep.

I notice when I am having a reaction to the Ultracet I get like a bag on the top of my cheekbone by my eye. Not suitcase size, or purse size..oh about the size of a flattened grape. I must sound like I look like a mess. I do.

Hope you are staying cool and finding shadows to enjoy your days,
Be well,
Oluwa

SonyaLA
09-04-2007, 10:44 AM
Hi Oluwa,

No problem..

Cocoa was good. My hubby took the girls out to the beach, and the pool had a nice big umbrella with shade, so I could come out with them part of the day. It was a nice break. School has started, and it's a struggle already with the homework, and afterschool stuff. I'm hanging in there.

We just got back from Illinois last night about 2:30am. We had a family reunion over the Labor Day weekend, and drove all day Monday to try to get home in time for the girls to make school today. We made it, but I couldn't get out of bed this morning, and my husband thought the girls should stay in bed as well. Oh well, more make up work.

I did pretty well over the weekend. Kept myself slathered in 50 spf, and wore my big goofy hat everywhere. I only had to take 1 nap that kept me away from the rest of the family.

I missed a pretty important meeting this morning at work. I was dreaming to think I could make a 8am meeting after the busy traveling weekend. I'm going to have to make a decision within the next few months about my job. It's hard to give up something that's been such a big part of who I am, but it might just be a new phase of my life.

I see my doc this afternoon. I'm hopeful the labs look good. I'm making a list of stuff to talk about, just to make sure I don't forget.

The itching still comes and goes. It's funny you mention behind the ears.. that's one of my most frequent spots at night along with behind my knees, and the top of my head. Since I was helping drive, I didn't take any meds last night. I was so tired by the time we dropped into bed, it didn't take long for me to pass out.

I'm going to visit a local shop to talk with a lady about organics. She teaches people how to eliminate things that cause health problems in their life. She also carries a large inventory of supplements and vitamins. It's worth a try.

Have a nice week, hope the fatigue eases for you.


Sonya

Oluwa
09-04-2007, 02:34 PM
Hi Sonya,

Sounds like you had a full summer. Do tell, how did the appointment go. Results in 48 hrs?

I too have been eliminating alot of free radicals, toxins, preservatives and etc as I can. I just order a variety of natural books on Lupus, SjS and Crete Diet. Dosing with pills and moaning....gosh there just has to be something else. It just doesn't seem like a good thing to me...swallowing pills daily. It scares me what it is doing to me and also scares me, what if I stop? It is as though I fell into a ice crevice at the Artic and wonder which side to scale out. When I decide will I be on the north or south side once I surface. North would not be a good option....but I wouldn't know, daylight 24/7.

Sometimes I wonder with a new house, new carpeting, new central air, paint an etc do they contribute to my symptoms. I started to go down hill fast when we moved in. But then...it was an extremely stressful year and continues. Still going head to head with contractors. I have one left to tend to.

After I resolve that one, no more. It is like flushing money down the toilet here. Contractors here push the market, and see how far then can go with their asking price. Currently, it would appear there isn't a ceiling.

New phases in life, we adapt...sometimes reluctantly, only to find out...hummm not a bad change after all. I like it! I hope your phase will be like that.

Hope any and all changes leave you feeling better,
Oluwa

SonyaLA
09-05-2007, 12:33 PM
Wow, new house.

My hubby and I talk about what we would do if we built a house. We enjoy changing our current house.... slowly... I can't spend too much energy on that. Although it might be a good point about the smells, fresh paint, carpet, etc. Chemicals have always had an effect on me. I have to be careful when I clean. I have a maid service every other week now, and they do not use harsh chemicals, but they don't get the house clean enough to satisfy. I like to bleach my shower, and my kitchen floor does not get clean enough with the soft cleaners they use. New soaps or lotions are also suspect. Stupid me, I used the hotel soap and lotion without thought, and I have a new rash covering my arms and legs.

I'm home again today. Couldn't get up after the new drugs. My visit with the doc yesterday was a bit of an eye opener. I had to take my girls with me, and did not get to ask enough questions, but my doc believes I have fibromyalgia (sp?). I'm about to go internet diving and learn as much as I can about that.... my doc says the lupus is under control at the moment, and the pain and fatigue I have are a result of the fibro. The pains in my legs, back and neck.. the inablility to sleep, restless legs, and the total exhaustion I constantly feel are classic fibro. She prescribed a new drug to take at night, amitriptyline (generic for elavil). She said we might need to work on the dosage, but I started with 25 mg. I might cut a pill in half tonight... or take it earlier. I was too groggy to take my girls to school, hubby had to do it and was late for work. (lucky for me he's a saint).

Off to work tomorrow I hope. My boss wants me to consider a different job, one in which I will manage a process instead of a department of people. He thinks it will be easier for me, and the hours can be more flexible. It's something I'm very interested in, but I love managing people, so this will be a bit of a letting go thing. I need to give this a try before I finally make the call to retire.

My labs looked good with just a little bit of an elevation in my sed rate, and my vitamin D was too low again. She has me taking D3 800iu a day to get that back in control. I go back in a month to see how things are going.

Good luck with that last contractor... we've had a bit of a boom here as well. I have so many friends who went through that same thing... never getting everything quite done...

Hope you are feeling well today.

Sonya

Oluwa
09-07-2007, 07:45 PM
Hi Sonya,

How are you this day?

Housing...I would rather have a house to update than a new one now that I've had both. Updating is so much easier, you set the pace. A new built, you are always up against the clock, ensuring the products are repair during and after construction before the warranties expire, organizing money availability, temporary living. The worse is when you see needless damage or when they repair they make it worse. The debates, the haggling, the disagreements, negotiating. Two year process. 9 months to built and 15 months working out the major kinks. Still tweaking though...but the major components are done. Crossing our fingers.

It probably wouldn't have been so bad if my husband didn't travel and I being sick...magnified it ten-fold. Moving is stressful as it...and new construction..it is a jungle out there.

Did you take the new job? When do you start? Change is hard, eh...but like always, the change becomes the old and another change is taking place. Sometimes noticed but many go by unnoticed.

I had lab done the end of July. Must have been no significant changes as I didn't receive The Call. I see him again on September 25. I am impressed with myself, I remembered the date. It just flowed....

I was reading in my newly purchased books. The ear itch is a symptom of SLE or gee is it Sjogrens...I think it is SLE. Sheeesh, I guess I can't remember all the time. Darn. When I come across it again I will tell you which one.

I purchased 6 wonderful books. Three on Lupus and two on SjS and one on Crete Diet for Inflammation. Oodles of good info. Makes me feel a bit more in control of my steering wheel. So, many things my doctor didn't mention that I think he should have. Maybe I need to change doctors.

Your pain sounds like my recent ones. Humm..do I have Fibro too...good heavens. For my achy legs I was prescribed Requib. I guess I have Restless Leg Syndrome (RLS). I stopped taking the drug for a week now to see and actually they feel alright. Not like the months before.

Stop scratching and enjoy the weekend...
Oluwa

SonyaLA
09-08-2007, 06:58 PM
Hi Oluwa,

Feeling very tired today. Slept til noon, and I'm back to bed soon. Having a traveling husband must be rough when you have to deal with all those house details, and don't feel up to it.

What is Sjogrens again? Isn't it the hands and feet thing? Memory fails as usual. The itching thing is driving me crazy the last few days, but then again, I'm covered in a new rash. It must not have just been the hotel soap, since I still have it.

The new job won't happen until my boss can replace me. He hopes for Oct 1st, but then again, I'm not sure. I also found out someone was recommending me for another job, not sure what will happen with that. It's nice to be wanted, even with my awful attendance issues.

I didn't make it to the health store, but I did order some things from ProHealth for Fibro health... some vitamins for energy, and something to help wtih sleep. I would really like to get to the point I could start some small amounts of exercise. I hate how my body feels, and the weight I've gained while taking prenisone really bothers me.

I should order some books as well. I get most of my info from the internet. I read a lot, but only for pleasure. It's a good stress relief.

Don't forget to talk with your doc about the pains. The info I've gotten on fibro was interesting... most have RLS, as well as pain in the back, and neck. Also Irritable Bowel Syndrome.. something I struggle with, and try to battle with diet.

You have a good weekend as well.


Sonya

Oluwa
09-10-2007, 02:56 PM
Hi Sonya..

Sjorgren's is where you basically dry up from the inside out. Starting with the eyes and mouth..and vagina. Affects organs, aches and pains...like SLE but not. The difference between all these autoimmune diseases is mind boggling because it isn't a lot. No wonder we go from specialist to specialist.

I do like all my new books...It seems like I wrote some of the words in the way I deal with my Lupus or suggest others to do. Maybe that is why I like them. I always feel we give raving critiques about a book because they coincide with our beliefs, our thinking. But I am open to new ideas and can be objective. So, I hope my opinion isn't bias.


1. The Omega Diet: The Lifesaving Nutritional Program Based on the Diet of the Island of Crete..basically a diet to control inflammation.

2. Living with Lupus: The Complete Guide, Second Edition..this one I like the stories.

3. The Lupus Book: A Guide for Patients and Their Families Third Edition. I like the medical aspect, terms and reference sections and guides.

4. The New Sjogren's Syndrome Handbook (Sjogren's Syndrome Foundation)

5. New Hope for People with Lupus: Your Friendly, Authoritive Guide to the Latest in Traditional and Complementary Solutions. This echos The Lupus Book without being so medical term.

6. The Sjogren's Syndrome Survival Guide

Check them out. I would say The Lupus Book is thee book to get if you want to just start with one. Author David Wallace, MD. I think you will like it. It has it all.

My mind is about the size of a pea today and it feels like I can't really pull a thought. Typing is taking forever as I look at the words and they don't look right. Edit..edit...edit. Seems like my first time ever typing.

I didn't want your post to go unreplied another day as I have been rolling in the bed too for a couple of days, the exhaustion hasn't been managable. I'll write again.

Enjoy your dreams....I am off to find some myself.
Toodles,
Oluwa

SonyaLA
09-10-2007, 04:25 PM
Oluwa,

Sorry to hear you are having such a tough time these past few days. I'm feeling a bit better today, although I did sneak in a 30 minute nap before picking up the girls for gymnastics. I worked a half day, and had to visit sylvan to get my youngest signed up. Three days a week, yikes... but she is really having trouble reading.

I've just flipped over to amazon.com and ordered "Living with Lupus". I'll start with that one. The only book I've ever read was "The first Year with Lupus" which was good for when I was first diagnosed.

Hope you got some good sleep. A few more weeks, and the heat should ease for us all....


Sonya

Oluwa
09-11-2007, 01:10 PM
Sonya...

The life of Lupus is like night and day. Hot and cold. Wet and dry. Up and down.

Today I am on the upside. I feel quite wonderful today. The usual aches, but mentally I feel so intact. I have all my marbles, shining and clear.

I give out so much credit to those of us (Lupies) who have children. Sigh..I don't have any, I don't how I would manage it if I did. I guess when you do, you find a way. I applaud all the mothers, it is a huge role in life. They say you don't miss what you never had but maybe it is by nature, a natural feeling, wanting to nest, for me, I miss not having children.

I always envisioned me with eight. Married later in life, so I didn't plan that one very well.

Enjoy the day with your girls...and yes, fall is almost here.
Oluwa

SonyaLA
09-11-2007, 04:45 PM
Happy Patriot's Day Oluwa!

Congratulations on a good day... I always celebrate those.

Today is a reminder to me of all the things I am truly greatful for. My kids are truly a blessing, and a miracle of sorts. Long before Lupus was in my vocab, I suffered infertility for 4 years. That was truly a difficult time for us. Painful surgery for the hubby, drugs and procedures for me... One of your other postings reminded me of a realisation I had back then. I was so focused on what my life was supposed to be (having kids right when I wanted them) that I was not really living the life I had right then... the NOW you mention. My husband needed a wife, not just a baby receptacle. We had a great support group, and that helped me get back a focus. Thank you for the reminder in your eloquent reply.

Ironically, the pregnancies jump started Lupus, although looking back, I believe I've had it since my early twenties. I would still have my girls, even if I knew in advance what would happen. I save most of my energy for them each day. When my job keeps me from that, I will know it's time to retire. It makes me sad to see how many Lupies want children but cannot have them. I actually thought I would have 3 or 4 kids, but I feel more than fortunate to have the two I got. Now of course, my doc stresses the importance of no more pregnancies, and I really couldn't handle more anyway. I still feel such a strong urge to be pregnant, the hubby insists on two forms of birth control... not that I would deliberately do it, but I'm so forgetful, he doesn't trust the low dose BC I'm on.

Here's to another good day tomorrow!

Sonya

Oluwa
09-17-2007, 11:39 AM
Hi Sonya..

How are things with you...rash disappearing yet. Mine seems to be drying. Still trying to catch that roving itch?

I had been in a zone. A bit of a stupor induced by Lupus but I am now coming alive...feeling quite good since this morning.

Took a dip this morning. Soon it will be too cold. The water that is. Today the pool temperature was 78. Cold enough to shorten my breath. The breeze, the sun...listening to the leaves find space on the branches as the wind displaced their settle place. Ah, a lovely morning it was and the afternoon is just as nice. Must be 80 out there. Evenings have been between 60-65. My kind of weather. Weather, where no one will say aren't you hot with those long sleeves...

I am still reading all six books. Leaving me lots of questions that I need answered at my next appointment. Did your book arrive?

My husband and I made two attempts through INVITRO...failed? Cancelled? To us, the same. Lots of injections, lots of cysts....and boy a lot of mood swings from the drugs. While I was crying, I knew it was so silly...no reason at all only because of the drugs. Through the tears I would laugh loudly at myself. Unable to control either. I must have looked like an animated cartoon. Sob, sob, giggle, giggle.

When maturing...I always wanted eight, but I never thought about it as in making it happen. Nor did I think about being married or not. It all happened or didn't when it did.

Thank you on the Happy Patriot's Day wishes. Reminds of words I once read...about Peace. Probably not verbatim and who said them..gee I forgot. But this is what I remember. Patriotism is not enough. I must have no hatred or bitterness towards anyone. Humm..I think it was a woman called Cavelle?

I served time is the US Navy mostly as an Air Traffic Controller. Though a veteran I never had an assignment in any conflict, war. Being a female AC at the time the only ship a woman was able to serve on as a controller was the USS Lexington, which they called the Lady Lex. Billets, openings are far and few for a an AC at the time on her. Otherwise ground war operations AC in Navy are, well, not. In my time it was a Marine Controller who would set up an emergency runway where needed on land. During war Navy AC's, would control the aircrafts off a ship. Amost 20 years later...I am sure many things have changed. Maybe everything is co-ed.

Well, let me see what I can turn out this afternoon. Loads of ideas but I have to match... energy with the idea. How much of it do I have to spare?

Hope your day was filled with everything feel good...
Be well,
Oluwa

SonyaLA
09-20-2007, 03:59 PM
Greetings Oluwa,

Feeling great today! I'm actually dragging out the treadmill and going to exercise a bit. (just a bit, I'm not stupid) I've had a pretty decent week, and my rash is gone. I'm actually out of Tramadol at the moment, and haven't made it to the pharmacy, so no roving itch. Funny though, the legs are really bothering me at night. That RLS has re-appeared. With the help of Benedryl, I'm finally getting to sleep. I'm still groggy in the morning from that new FM medicine, but I've been in to work every day this week. That's an accomplishment for me lately.

I do wish we had a swimming pool, I think that is good exercise for Lupies. The weather where you are sounds great! Florida has two seasons, hot as all get out, and tolerable. We have almost hit some tolerable days. We've been getting a lot of rain the last few days. As I drove into work in the rain, I felt so good I wondered if I need to move to Seattle!

I just got a notice that my book will not ship until late October! I would have to pick a book that took a while. I'm not sure that I could read 6 books all at once. That takes some talent.

Way back in my high school days I wanted to join the air force. I had these illusions of being a pilot. I test really well (well back then I did) and had good grades in school, so the military was after me for an appointment to the academy. Visits to the parents, offers of summer camp in Colorodo Springs etc.. I found out that at 5 foot 1 inch I had no chance of the pilot program I wanted... crushed... I changed my entire focus for my life after high school. No regrets though... I do wish I had developed more of a discipline, military would have helped that.

Good luck with that energy disbursement

Sonya

Oluwa
09-22-2007, 04:27 PM
Hi Sonya,

How are you?

I had an overdraft on my energy. And the penalty fee was outrageous. Pain and depression flooded my body. Paid my debt and now I am back. I get it now. Life with Lupus. You don't wait for an intermission, you treat yourself with care and caution always as if in a flare. I have so much restructuring to do with my thoughts..I think I am on my way to being whole as a person can be with Lupus.

I also learned that my muscles have wasted away despite doing pilates and swimming. When I did things like scrub the tile in the pool with a long handle brush or sweep the porch I think I was damaging my muscle. Wow. I am learning a big lesson.

Oh, I am not in Seattle any longer, just north of you South Carolina. Here the summers are hot, but the winters are colder than Seattle. I miss home.

October, good heavens on the book. Must;ve not been in stock, eh? With the six books I do not read from cover to cover I leaf to a chapter that peaks my interest. Read that area in all, then browse to another section. They refer to David Wallace's writings alot but their dialogue, personable or medical seems to be the difference. I like them all in their own way.

Yea, my RLS seems to have disappeared. Your's still acting up? I dose with Requib for a month I think. Last month...sheesh alll months seem to be the same this year. The only change..perspiration. Since taking Plaquenil I now experience the dew. Sweat.

What does FM feel like?

Enjoying your weekend after your week of work? How you all do it, work and Lupus, FM and etc. I don't think I could manage. I think you are probably at a better, higher place in your spirit and mind with your illness than me. I am just getting the jest of it. Thought I had it figure, but turn the kaleidoscope and a whole new perspective shows itself. I am learning.

Keep handling yourself with care,
Oluwa

SonyaLA
09-23-2007, 05:21 PM
Oluwa,

Sorry to hear about the energy overdraft. I've certainly done that a lot myself in the past. Usually happens because I've already spent energy somewhere else, and my kids need me. Or some family event like fourth of July has us hopping between events, and I crash before I get a chance to see the fireworks. That website mentioned somewhere on this board, youdontlooksick.com I think, has an article about spoons. We get alloted only so many each day, and we have to be careful how we spend them.... that's something I've been keeping in mind a lot and it does help.

I'm pretty happy about my week, although I was very tired Friday. I left a little bit early so I could grab a nap before soccer practice. Afterwards, the girls begged for their babysitter, so me and the hubby went out for dinner. Saturday was an all day soccer bonanza as it was the first games of the season. Luckily it was cloudy, and slightly rainy. I was able to make it with just my big floppy hat.

Sunday was a sleep in day.

FM is hard for me to describe, since I've pretty much assumed the symptoms were Lupus until recently. Mostly heavy fatigue, and sore spots and pain in my muscles. My legs especially, but also on my back and neck. I have IBS, diagnosed years ago, and I've learned that is typical FM as well. I try to deal with that with diet, and am mostly successful.

I do have days when I wonder how I will get through the week. Retiring from my job is something my family is discussing a lot lately. At the moment, I'm doing okay. Much better than most people with lupus. I'm fortunate that I have an aggressive doctor that tests me regularly, and as soon as something looks off, adjusts my treatment. I've never had to be hospitalized, because my doc catches it before it becomes that bad.

I have a very understanding boss. I've missed a lot of work, because when I feel I need to spend the day in bed, I do. That is one trick I have learned this year. If you think you need rest.... take it. The price is less than if you keep going and crash.

I'm still not quite used to the new meds, and the legs are really bothering me at night. Benedryl is helping me get to sleep. The meds keep me asleep all night.

I'm considering acupuncture for the FM. I'm a bit afraid, but willing if it helps with the pain.

I'm backing off the little bit of exercise. I'm just walking a bit here and there. I really want to lose weight. I don't like the way my body feels.

Why do you think your muscles were damaged? Pain? Bruises?

I have shied away from exercise myself for so long.... I really want to get back into it... but I don't want to damage anything.


Best Wishes.... hope you had a good weekend...

Sonya

Oluwa
09-23-2007, 07:08 PM
Hi Sonya,

Your days are full...

Acupuncture is wonderful. I used after my lumbar surgeries. The setting was clean, cozy, with an Asian flare. She would even light with flame the needle ends. I laughed asking do I look like a birthday cake back there. And times I'd flip and she did my front, chest...between my toes. She even applied cupping. Creates suction with a glass and drags it across the skin/muscles. Bruises, suction marks but felt wonderful.

Here I go wishing again...I had that done in Seattle, wish I was there. I haven't ventured into seeing what Charleston has for alternative medicine. Charleston is such a small city. Very rural. The pace of life seems to have slowed down here and very little growth for about the last 20 years, but houses are going up left and right. Crazy. So, who knows what will roll into town now.

When you don't use certain muscles for a while, atrophy settles in, muscle starts wasting from laying around. Then you do something vigorous you can rip them. Kind of like body builders do to create mass. More weights. Rip, repair, more weight...rip, repair. It feels extremely painful and sore, not like a fatigued muscle workout or burn. I mean it hurts just to feel someone breathing on your muscle hurt.

I need to more upper body workout...start out with light weights if you do. Two to five pounds hand weights or cans of corn. I remember when I had carpal tunnel surgery I was doing wrist curls with one pounders and the guy next to me was doing his with 20 pounds. Was that ever comical...

Now I just have to get motivated. I am over weight too. I don't like the way mine looks and feels. I've been playing yo-yo with five pounds lately. Here this week, gone next and back the following. I want to lose a total 25. I am shooting before Thanksgiving. With a sedentary lifestyle, gee can a girl live on a half of apple and a slice of turkey? My metabolism...well it isn't. I can't imagine I have a high metabolic rate. Supposedly I burn like 2000 calories just breathing, but I know I don't eat 2000. Somedays 1000 but I hardly break 1500.

With summer almost done, and swimming season is over...I have to get a real daily regime going.

A great site to keep track of calories, goal weights and activities caloric burn is at www.fitday.com You log in your exercise, duration, eats and etc and it does the math...

When my legs bothered me, before Requib when I flexed my foot up, toes towards the knee it helped. Kept my legs tight till I fell asleep. Maybe try sitting on the edge of the tub and alternating between very warm water and cold. Maybe the circulation is poor and need more blood and oxygen. Having these diseases it can be hard figuring out homepathic remedies. I keep trying.

I see my doctor on Tuesday. I have many question for him, especially the "fog". Last week was awful while I wasn't well. My mind just could not compute anything. Severe eye, chest pain, head and neck aches.

My Sunday was extremely slow. I ate. Before I knew it the day is now ending. I spent alot of time on the phone, long distance with family. I am from a large family. Eight of us children. Probably clocked in 6 hours with AT&T with 4 of them. Easily.

And now I am ready to call it a night. Hope you sleep well tonight..

Night Sonya,
Oluwa

Oluwa
09-27-2007, 02:56 PM
Hi Sonya,

Just checking in on you? Having another pretty good week like the last?

I hope all is good with you.
Oluwa

SonyaLA
09-30-2007, 10:30 AM
Hi Oluwa!

Augh, my computer is acting up. I had just typed up a few paragraphs, and it went haywire. I've been pretty busy, working every day again. Thta's two weeks in a row. It's been a while since that happened. Good timing, because my boss decided to move me on to the new position by the end of October. I had hoped to wait until the end of the year, but it's okay. My team leads are upset, and I hate to leave them, but it's going to okay. I'm excited about trying something new.

How was your appointment with the doc on Tuesday? Did you get some answers to your fog. Are you feeling better?

I've always wanted to visit Seattle, one day.... I'm sure I'll be in Florida for at least the next few years.

I'm hoping to start the exercise soon. I think will be able to. My Dad has started back with Weight Watchers. He lost 50 pounds last year, and he wants to lose another 30. I joined with him last year, but got sick. I didn't realize it for a few months, but my liver was failing because of the years of pain meds. I was barely eating, as everything upset my stomach, but didn't lose any weight. I later learned it's hard to lose weight if your liver isn't functioning. Once I stopped the meds, the liver recovered. That's how I ended up with tramadol. It's easy on the liver.

Saturday was a usual hot Florida day. Even with my umbrella and hat, I was so red faced by the time we left. I went home and took a 4 hour nap. Now, I'm spending a lazy Sunday...

Hope you are feeling better!

Sonya

Oluwa
10-01-2007, 10:02 AM
Hi Sonya..

He said I had pleurisy. I'm wondering what is really going on in there. I restarted Protonix for my GERD. Took a lot of the pain in my chest and back away. But the pain deep in my chest and back is still there when I take deep breaths and lay of my left side.

Afraid to go back to my rheumatologist because I lost faith in him...just with somethings that contradict what he said and what I read about Lupus and read in this forum too.
So, I am debating..wait it out and see if the pain resolves. He said if it hadn't to come back today and he will prescribe steriods. I am just apprehensive because I think it is something else. Herniated disk..heart or just out of shape.

Having herniated a cervical disk, with surgery and having GERD leaves me so unsure of what I feel..yet unsure who to see. I went to the ER thinking I was having a heart attack. Early age heart disease runs in my family. Nope, diagnosed with severe GERD. Food was getting stuck in my esophagus. Numb fingers, pain in the chest, bicep, shoulder and etc...left side it was a herniated C5-C6 disk. Today I feel it all. Numb finger, tingly hand and all the same spots of pain. Now with the diagnose of Lupus..I am even more confused as to what it is what and what isn't. I feel my current rheumatologist doesn't either. Maybe I will make an appointment with my primary doctor and see what he thinks..ask for an xray and a MRI.

The fog..he looked at me with a puzzled stare.."Don't know."

With exercise I would start small...just do things like arm circles, leg lifts and stretches to get the blood flowing and take it from there. Add maybe a bit of walking, pilates..add 2 pound weights. Listen to your body. I try to that. Though I am not so mindful. I am trying to do the balancing act myself. Learning, when I feel a surge not to run with it. Routine is key for me.

It is great you are feeling fulfilled in the work force...new endeavors. Good feelings are like medicine for the body and not just the soul.

I am going to stretch and rest today. I had bigger plans but I think it is best I see what evolves or doesn't with this pain.

Enjoy the this day...
Oluwa

SonyaLA
10-17-2007, 04:34 PM
Oluwa,

How are you doing? I've been away from the computer for a few weeks. Things are doing okay. In fact, better than I have been in some time. The new meds are really helping with the sleep at night (part of the reason I've been away from the computer,.. no late nights).

How is the pleurisy? The GERD?

It's funny how many doctors do not acknowledge the brain fog, but we all know it's real. There are too many of us who experience the same exact thing....

New thing I'm about to start is Mona-Vie. The fruit extract "wonder" supplement. Someone gave me a free bottle, and I'm willing to give it a whirl.

Hope you are finding some relief in the fall weather.

Sonya

Oluwa
10-17-2007, 05:04 PM
Hi Sonya..

There you are. I had put out an APB out on you in another thread. Happy to know you are doing alright. Me, I'm doing good, good. Thank you for asking.

Do tell me if you notice anything different from the wonder supplement. I am game to try anything that will help me to feel new and improved.

The GERD..the flame was put out with Protonix. Wow, and was it a relief. Some of the chest, arm pain was injected away with a cortisone shot in the shoulder from my primary. But the nagging, stabbing left chest side and shoulder pain, and direct spine still lingers. And I still have a smile on my face.

I did end up going to my primary. I don't think I am going back to the Rheumatologist. His blank stares frightened me away.

I had 2 X-rays of my chest today. My primary wants to hold off on the MRI. He suggested if it indeed it is another herniated disk, since I know I would not have surgery this year. So wait on the MRI till then too. Too much in one year for my body...and the holidays is soon near. But in the interim, he will leave no stone uncovered. I have great faith in my primary doctor. He is one of the good ones and a good one is a hard find. And if nothing comes back, with the test. Just for my own sanity I will request the MRI before years end.

I've been doing pretty good with the lost in space fog. I haven't been in one lately. Not stumbling about looking for lighthouse beacon to bring me in. I am in. And feeling pretty great at that.

Sleeping throughout the night?...feels good. I know I've had a few nights of cozy, comfy, covers tucked under my chin sleep. And it feels sooooo good doesn't it.

Here's to many more quiet uneventful nights.
Thought of you often and in my words with Him.
Night Sonya,
Oluwa

SonyaLA
10-17-2007, 06:20 PM
Oluwa,

So sorry for being AWOL for so long. I usually logged on after I had put the girls to bed, the hubby had flipped over and immediately went to sleep and I was stuck alone, staring at the TV wishing I could sleep, wishing I didn't hurt so much.

Soccer has started up with a vengeance, practice twice a week with the 9 year old, once a week with the 7 year old... (added to the gymnastics and sylvan). With the new meds, I'm ready for zzzz's by the time I get all of the mommy stuff done.

Glad to hear you are feeling so well! I've said a few prayers for you to! It's nice to hear when someone does that. One of my team members told me just yesterday that she could tell I was feeling better and wanted me to know she prayed for me every day. I gave her big hug... here's a big one sent to you as well...

Good to hear about the GERD. I'm glad you have a good primary. I've got the opposite situation, with a lousy GP, and a wonderful rhuemy. Sounds like he has a good plan in place. MRI's are scary to me. I know some places have the newer models that aren't so bad, but my clinic had the old style, and while I am usually pretty calm about most things, sort of a grit my teeth if I need to, those tests really freak me out. I have to meditate, and really concentrate on it. My last one, to check my bone density, engulfed my entire body for 25 minutes and I almost lost it.

Good news on the fog too.... I often do not realize I am in the fog until I come out of it..... and that is such a good feeling... to feel fully THERE.

Hope you have many more cozy nights of sleep.

Good Night...

Sonya

Oluwa
10-18-2007, 08:28 AM
Hi Sonya,

Thank you for the prayers and the big hug. I feel cyber hugs. The mind is a powerful thing, envision, it is felt. Thank you.

When I call my family, they can hear the spring in my step too. My voice tells all. Even though I try to be up sounding when I am not they always find me out. I guess I don't sound so full of life and wonderment, with laughter and excitement but more mechanic like. Monotoned with a few giggles.

I've been enjoying my morning. Up and doing a bit of aerobic dancing at 6AM. How freeing with non choreographed moves. Do you like to dance..try free form..find a beat and move what feels good. I did light chores. I attempted to hang my blinds. Attempted. Hard on the arms in the upright over head position. So, hear I am taking five. Only 24 more holes to drill and screw. Hard on the fingers and wrists. I guess I need to exercise those too.

Glad you are out of the mist...and enjoying your children. Mommy...I love that word. It's a word that says, full of love to give and for little people to love, and feel safe. Maybe one day we will adopt..someday.

Hope you had awaken to another good day,
Oluwa

SonyaLA
10-18-2007, 06:17 PM
Oluwa,

Wow, up at 6am, dancing, house chores and home improvement! You are feeling good. That's GREAT.

I love to dance. I used to go dancing all the time, in fact that was how I met my husband. We both loved to dance. It's been ages... Freeform is all I can do. I'm not one of those people who can dance a routine, or even line dance. I get confused between my left and right, and if there is a mirror anywhere.. (like at aerobics) forget it. But put a good dance song on, and I used to just go to town, in my own little word.

Being a mommy is my most important job. The thing that surprises me most of all, is how hard it can be. It's not just about nurturing and giving them love... which unfortunately many kids do not get that at all, but the hard part is putting my foot down, and telling them no.

I hope you have that opportunity. Have you looked into adoption? I'm can tell you would make a wonderful mommy..

I'm heading off to bed. My department had a big afternoon "outing". It was to celebrate how well the company has done... It was held in an old hangar.. They brought in barbeque, and had pingpong, pool tables, lots of games. The only thing was, it was NOT airconditioned and 95 outside. Within an hour I was totally red faced, and sweating up a storm. I'm going to have to make up for it with extra sleep.

Good luck with the drilling.

Have a good weekend, off to lala land.

Sonya

Oluwa
10-19-2007, 07:22 AM
Sonya,

Used to, used to..you can break out a shake still. Try it. Even if the movement is small. Great exercise. Dance with your girls..it makes me feel great inside. Do you get FitTV channel?

Did you get that extra needed sleep? I haven't been to a barbeque in a spell. I can whip up some mean ribs myself. I do the wet ones, not the dry rub. Humm, maybe I'll have to get a few babybacks for this weekend. My husband loves them. But I put them on the menu rarely. Brown sugar and pork not a good combo with GERD or Lupus (sugar). But oh boy, my lips do love them too.

I think of adopting, my husband isn't ready for that thought.

Let me see what the day brings...and enjoy yours and the weekend too.
Oluwa

SonyaLA
10-26-2007, 05:13 PM
Hi Oluwa,

How was your week?

I've been thinking about those mean ribs! I got my extra sleep in over the weekend, and had another good week at work. I saw my doc on Thursday, and she is real happy with my progress. My knees are still swollen, but she agreed to a little exercise. I have to do stretches with warm wet towels first, but heh,..... I'm excited. Of course it was the first time I braved the scale in months, and horrors.... It really hurts to watch the nurse write down that number.

There's something going round lately, and both girls have been sick. My 9 year was finally getting better, and my 7 year old picked it up. Some fever, and a barking cough. My 9 year has a tendency toward asthma so we had to get the nebulizer out.

They fight all the time. When they are not feeling good, ... it's non-stop. I have to keep them separated. I'm getting tired of Hannah Montana and the rest of the disney channel.

Did the cooking spell get ahold of you? Hubby was experimenting with seafood and a white wine sauce..... good week.


Hope you are feeling well


Sonya