Is there life under this cloud? Newly told of lupus and more...

Background.  Day-to-day life is not what it used to be for me.  I am an educator who had  RNY back in 2002.  I lost 96 pounds in less than a year.  A bit over two years out (around 2005), back issues, joint issues, aand pain developed in my sides and back. In spite of this, I usually walked 2-5 miles a day for five or six years until the pain got so bad that I would writhe on the floor begging God for help.  Saw docs on and off for 6-7 yrs.  (Was a member here years ago, but lost my old password and changed emails...)  Put on some pain meds, told of degenerative disk disease, some epidurals, some PT, etc.  Finally, suggestion of fibro two years ago.  Pain increased over the last two years.  This January, I saw new - in - town rheumatologist whom my reg doc recommended since I was still saying the pain meds didn't help, and I can't even attempt to take them while teaching.  Extensive tests.  Lupus, arthritis, Raynaud's were diagnosed. My back problems were said to be a combination of osteoporosis, arthritis, the disk disease, and the lupus.   New meds (pred, gabapentin, plavix, plaquenil, and vitamins).  Oh, and BTW, "when did you have the stroke on your left lobe?"    (And here's the kicker, after getting to know her and feel confident that she had me on a path that would help, her husband was abruptly transferred, and she followed with only a few days notice!) Oh, I do have an appt with a new rheuma in two weeks; it only takes 5-6 weeks to get an appt....

Weight gain about 25-30 pounds last 2 years.  Due to pain my walking (main exercise) greatly diminished.  Now with pred. with more weight puffiness-gain.  I have started the  17 Day Diet to see if I have a carb sensitivity, which I've suspected, and I am attempting to give it a go.

That's background, and probably too much.  Here's my heart being opened to strangers--- I am sitting here crying about what I need to do.  How do I handle each day when I can't predict what it'll be like when I put my foot on the floor that morning?  I am a teacher.   That's who I am.  BUT, I am so exhausted by noon that I feel as if I am paddling in murky and painful jello in the afternoon, and I still push myself beyond to give all my kids everything I can.  I truly just collapse when I get home.  Grading papers on Friday had my hands and back in such pain that I am still in spasms and can't even move comfortably this morning despite doing my traction and PT.

How do I cope with the pain and now, possibly, having to give up who I am?  Ideas?  Advice?  Words of comfort or inspiration?

I'm sorry no one has responded by now and I hope you keep checking this forum. I too have lupus but haven't had my WLS yet. I'm scheduled for 8/4. I am hoping that by now you are getting some relife from the prednisone and plaquenil. The prednisone is usually instant but the plaquenil can take up to 4 weeks. I am on both but am now tapering off the prednisone. The plaquenil has been a life saver for me and I hope it is for you. I suffered for 5yrs with doctors telling me it was fibromyalgia and them giving me meds that didn't work. I think after a while they thought it was all in my head. It also took 3 rhematologists to finally diagnose me correctly. Trust me there is light at the end of the tunnel. Please don't give up. You have to have a positive attitude and fight this.

I'm sorry you are in so much pain. I was diagnosed with SLE i***** and spent about a year on the couch. The kids were less than a year and 2.5 years at the time. The steroids definitely mess with your appetite and your moods, not to mention your metabolism. Try to take it one-day-at-a-time and it will get better. It took about 16 months until I was in remission and then I could start to see the light at the end of the tunnel. Hopefully your new rheumatologist will be great & you'll be in remission soon. I know it is hard to see the weight gain, but you'll be able to get it back off once the lupus is under control. I'm praying for you! Lis

Interesting to hear you symtoms as my surgery date was 12/9/02, starting having weird symtoms during pregnancy 2/04 so about 15 mths out but they attributed to the pregnancy because reg. bloodwork was normal such as cbc, no REAL test for anything, but began begin sick with one thing after another starting with a simple cold in 1/05 POST BABY, until i was basically bed ridden and diagnosed with leukopenia in 5/05 and recurrence of mono. Things spiraled out of control feeling I couldnt figure out why I was sick sooo much not thinking or remembering I was a sickly kid. Wasnt diagnosed with or even tested for anything until my hair started falling out badly in end of 2009 and started having a lot of scalp sores, then I received a dx of MCTD, LUPUS, and Fibro in feb 2010.  But because I had dabbled with a street during the time of getting no answers family/doctors were convinced that since I only have 2/3 markers that it wasnt really lupus. So I quit the drug use and started looking for answers on my own, I am shocked at home common lupus is post op, I am almost sure I probably was predisposed to have it, and the few yrs of torture my body went through for my surgery,birth, another surgery, drug use for the 1st time, just sped things up for me. I have since learned that my particular surgeon actually bypassed more of my intestine that was allowed (he no longer practices and has no ins) so i have to triple or quadruple my intake of EVERYTHING in order to maintain any health, which as a gastric bypass patient you know thats difficult to get the minimum let alone multiply.  And getting anyone to believe your sick when you look normal(minus being bald) is hard enough!! I am grateful for the new yogurt that has protein because its close to liquid form which allows more protein in because meat of any kind is next to impossible for me at all. I know just being here and getting affirmation that Im not nuts and these are real problems that happen to real people gives me comfort, and i am hoping any info anyone can share will give me insight on how to move forward and not give up completely. I noticed other have had to be put on iv nutrition, didnt even know that was an option.
Also along with these problem have you have any problems relieving your bladder, such as urgency then nothing comes out??

Just FYI -

My surgeon is no longer practicing as well. He actually did more high risk patients (super morbidly obese) and probably bypassed more than they would ever do today. His focus was on a patient never having weight regain - I have to eat like you do as well. You are not alone

If you are having problems with weight loss - there are digestive enzymes that your doctor can prescribe for you that help with absorption. I would try that before IV nutrition.

Also, I find that no-one understands my walk. I had a girlfriend who happened to have surgery and then was diagnosed with a number of auto-immune diseases. She apologized to me for not understanding- her attitude towards me prior to her diagnoses was to "suck it up" girl and get it together. Now she also suffers from pain and debilitating fatigue. She says now she understands. I now don't expect anyone to "get" it and do the best I can.

Good luck with your walk

Fellow lupie

B

 

Hey Scout.... feeling for you!

I too, have lupus, fibro, raynauds, Sjorens, - you know it... the list gets longer

My advice to you - follow the medical advice and find something you can do well in bed. During one bad spell I crotched each of my friends an afghan. That way the time is productive and I had something to show for it. 

Dont hold yourself accountable to standards that apply to healthy people. Your job now is to heal - your number one priority

Congratulations on hanging in there - this too shall pass

B