I have a few questions please help

demurebutterfly
on 11/2/10 9:12 am - Lima, OH
I have been diagnosed with Sjogren syndrome and Lupus.  I have been stalled for 3 months now a I am getting very fustrated.   I am sleepy and exhausted all the time esp after working the day before.  I work on a medical surgical floor so very litle time to take it easy, or have an easy day.  Is this normal for me.  What do I have to look forward too?  i don't know what to think or how to adjust my life any ideas?  I also have Fibromyalgia, Vertigo and PCOS on top of kidney stones.

How does the RNY and Lupus effect each other?

Beverly
   

   
Scout2011
on 4/30/11 10:16 pm
Day-to-day life is not what it used to be for me.  I am a teacher.  Had RNY back in 2002.  Pain, back issues, joint issues, etc.  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 increasing last two years.  Saw new - in - town rheumatologist.  Extensive tests.  Lupus, arthritis, Raynaud's, still back problems, osteoporosis, etc.  New meds.  (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!)

Weight gain about 25-30 pounds last 2 years.  Due to pain my walking (main exercise) greatly diminished.  Now 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 the thing that toucned me.  I am sitting here crying about what you said about having to quit teaching.  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.  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.  
Guernica Loser
on 11/12/10 2:34 pm
First of all HUGS...

I was diagnosed with Wegener's Granulomatosis and it's also thought I have fibro.  I was a school teacher and I had to finally give it up as it was just too much.  You must be dead tired by the end of the day.  I remember working, coming home and sleeping until the morning and do it again.  I had no life and when I was awake I was just so tired.

I have to take chemo and prednisone for life.  Are you on either?  Of course higher doses of pred will really mess with your weight.  Meds like Lyrica for fibro pain is not great for weight loss either, but then again neither is the pain.  I have read that PCOS makes it more difficult to lose and I believe there is a PCOS forum on here?  AND THE KIDNEY STONES?  OUCH!!!  Had that and never want it again!

I feel for you and if you need to talk I'm here.  Is there any way you can take a family medical leave for a bit to help you build up some strength? I did that the first year I was diagnosed and it did help some, but in the end I had to throw in the towel.  I had been working and going through school for over 10 years with it (before being diagnosed) and my body just finally said NO MORE.
I've been on prednisone and chemo for over 7.5 years.  Gained over 160 pounds due to pred. Highest wt. 410. Surgery wt. 365. Current wt. 299
See ya,400s, 90s,80s,70s, 60s, 50s, 40s, 30s, 20s, 10s 300s!!!!  
                                    
             
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