Roll call . . . . How's everyone doing????

Hey guys.  I'm getting in late on this topic.  It's been forever since i've been around.  I have had an uphill battle for a while.  I actually hemmorhaged 2 weeks ago (female style).  I really thought I would bleed to death.  I already struggle with anemia.  So, I took an extra procrit shot and borrowed some norethindrone from my aunt who recently hemmorhaged too. (runs in the family, I guess)  Since then, I have been so weak and my muscles are cramping like crazy!  My blood pressure keeps dropping drastically low, which is highly unusual for me!  Anyway, I had labs today and will see my neph tomorrow.  I know she's going to bless me out for not going to the er and for borrowing meds, but I really have an aversion to ER's these days.  It's usually a wasted trip for me!  I'm praying my kidneys have not gotten worse.  I was down 28 percent at last check!

In other news...I am staring an on line business!  I am so excited!  I really thought my 'productive' life was over when I lost my ablility to 'nurse', but God had a plan all along!  If I can only get the strength to do what I need to do in order to open! 

I really hope you are all doing well.  Don't ever, ever give up!  Keep your chin up!  I"ve got all three of mine up! :)  God Bless and Keep each one of you!  Judy 

Rosie thought this is a good thread to put back up: Well been going to all my docs. It seem's like that want to see me around the same time. Went to my Hepatoligst first still have a fatty liver need to lose weight haha.he also told me I need a sleep study done what a joke but I will have it done since all the other docs. seems to think it's a good idea. Went to Rheumy I still have low count on vit.d, which I had been off preds for sometime now still on 50,000unt vit.d, thyroid is to high. Went to Pulmonary need to use inhaler more since the humidity is just so bad most days.G.I docs. says all my stomach problems is due to gastroparesis. Eye doc. seen a cataract in left eye but not bad enough to do anything, and something to do with my peripheral vision he's sending report to pcp. Went to see pcp all lab works need to done again just keep draining my blood from me lol.eye doc. didn't send report over yet about my periperal vision. doc. will call me when the report comes in, see my derm in 2 weeks. This so much fun having lupus.... yea right lol. Debbie

Hello!! For anyone who hasn't updated us recently . . . go ahead and tell us how you are doing. Blessings!

Oh, Judy! I'm so sorry things are going so poorly with your kidneys just now. I know Cellcept is often used for kidney situations. I wasn't given Cellcept for kidneys, but instead for cognitive dysfunction -- but it worked miracles for my brain without any side effects anywhere else. Probably your doctors have already considered Cellcept, but if not you may want to ask them about it. I hope things start getting better soon, it sounds like you have a terrible lot on your plate, Cheers,

I hate my life, I hate this disease, I hate having an indeterminent future, I hate everything!!!!!

Other than that, life is grand.

Rosie- I researched my butt off when I first got sick. The nightshade group came up so much I thought I would give it a try. At first I just cut out tomatoes, since my reactions always came within 10 minutes of eating italian food. I was still sick though, but a little better.I then omitted ALL nightshades. It took me 3 weeks to figure out every night shade. So when I figured out that it also included soy, beans and peas/chickpeas and peanuts,I stopped eating --well everything-- BY then my symptoms were down a lot, but still there. I started realizing shortly after that every time I took a vicodin for the pain my chest would hurt, my throat would swell, my legs would lump up etc. I put it together and started testing how different pain meds affected me. One day I would take an aspirin-same thing would happen , next day IBprofen-same thing.

So although I was in pain, I stopped taking all pain meds that had tylenol, aspirin or IB. I switched to 5 mg oxycodone pure, not mixed with any other meds. And within 4 days almost all of my symptoms wheregone.

I was so happy that for a few weeks I didnt want to test my ideas. I lost tons of weight. Was out and about every minute of the day ( and night) I felt like my life was back. I havent "tested" my theory too much. I am so nervous. However I do know that I was slipped some potatoes in a meal about 2 weeks ago- i took only one bite- within 5 minutes I had a fat lip and knotted up tongue. Also I accidently licked my fingers while making spaghetti and AHHHH! my WHOLE face went *POOF*. I couple of other small incidents have occured. Where my hives come back with swelling.

I am 100 percent sure I cant touch the pain meds though. I have really bad toothaches and sometimes I give in and take a tylenol and I go into a mini flare. Like I am right now. 3 days of itchy skin and a little moon pie face. Not too bad though. Its nothing compared to what it used to be, and could be again.

ALSO!!!! I dont eat canned or boxed foods. I can have salt, if its to food I make from scratch but NO boxed/canned sodium or my water weight comes back. Also my body only lets me eat small amounts of almonds, shellfish and chicken.

I figured everything out from research and from giving up on eating. For weeks all I ate was carrots, greens, onions garlic bananas cucumbers and broccoli. I was so scared to eat. I very slowly introduced little pieces of meats, diary, coffee(YEA STARBUCKS AGAIN!) and other veggies and grains.

I watch everything I eat and remember I am eating to live, and living isnt laying in bed. So even though I would LOVE some peanut butter...or a burrito..or mmmm lasagna, I would rather look good , feel good and be happy.

Hi, im new to this site... i have lupus and Ra known about it for 4 years now have had several surgerys and now have to go to gainesville,fl to shands to try to slow them down. just need people with same problems that understand what im going through.

Shands is the University of Florida research center since i have 2 autoammune deseases and they cant get them under control my Dr. is sending me there... thank you very much for the reply.

HI Rosie.

I am here, hanging in there. Trying to enjoy the summer, when it isn't cold and raining. Certainly unusual weather for Ontario Canada. But the weather is weird all over the world I think.

I am scheduled to see the Rheumie next week and have lots of questions for him. I recently lost 17 pounds in 5 weeks and I am not sure if it is because of my thyroids, which I have thyroid disease, or if its because of another problem I am dealing with right now. I had 3 pap smears come back abnormal and what worries me is that during the first exam my doctor found 4 spots that she isn't sure what it is. I see the specialist on Wed. next week and he is removing one of the spots and sending it away to be tested.

So I am tired out and hurting, other then that I am doing ok. I am working on my flower beds, trying to keep up with the weeds and just keeping busy.

Hope everyone is well here too.

Connie

Been doing great. My lupus is under control, which is very fortunate. I am so glad that after 19 years of Prednisone, I can finally stop taking it. My rhumty in the UK is wonderful. No docs have been able to stop me from taking it due to flare up at the dosage under 2.5 mg, but this rhumty has been able to wean me off. I am now on Cellcept which works wonder on me. I hope it will stay this way.