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Old 11-27-2012, 06:22 PM   #1 (permalink)
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Does anyone else here have lupus? I'm not sure of some of you remember my wonky health problems....someone finally connected the dots and I was diagnosed with SLE. Aside from feeling quite miserable, I've been reading some pretty scary statistics (especially in the wake of the death of the daughter of the Houston Rockets coach)... especially because I chronically have heart and kidney problems. Anyways, I don't really get a lot of support at home (my husband is nicknamed Dr Mengele) and it's a little overwhelming/scary so I was just curious if anyone else lives with this disease as well?
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Old 11-27-2012, 07:27 PM   #2 (permalink)
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here's a forum that may help....

WeHaveLupus.com

There are several others but, this may be a start.

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Old 11-27-2012, 07:30 PM   #3 (permalink)
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I have an autoimmune illness but the doctor dx'ed me with "mixed connective tissue" because I didn't have enough of any of the symptoms to decide which was what. I have soreness/achiness, swollen joints, autoimmune thyroid and tiredness, all of which get worse under extreme stress.
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Old 11-27-2012, 08:45 PM   #4 (permalink)
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Here is an old thread with a lot of people in it:
Autoimmune disorders... ( 1 2 3 4 5 ... Last Page)

Not sure who is still around but you might find a couple.

I am sorry about your diagnosis. I hope you are able to find some good information. T

There are sometimes local support groups if you check with the national org.
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Old 11-27-2012, 09:00 PM   #5 (permalink)
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Thanks for that thread, Jean! The spoon article was definitely interesting. My husband just doesn't get how sometimes, getting out of bed is too hard. Or showering. Or driving to work. I work on the computer, and typing can be excruciating. I've been very lucky that my last couple of flareups were joint/muscle pain/swelling/weakness only and a fever.... I'll take that over the nephritis and pericarditis.
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Old 11-27-2012, 09:06 PM   #6 (permalink)
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The spoon thing definitely is interesting and helpful for people who may not be able to understand things people try to say. I don't think most still get - that if "I choose to do this, I am done for the day, or can't do another thing later" concept, but basically that's it. I think there may be some good hints in there (bath benches, robes as towels, etc) that might help.

Another thing - if he has ever had any illness that you can help to compare it to - mono I think is a good one...and can possibly imagine it never going away...

Yes - there are things to be grateful for still! I hope that continues for you.
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Old 11-27-2012, 09:13 PM   #7 (permalink)
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Quote:
Originally Posted by JeanKBBMMMAAN View Post
The spoon thing definitely is interesting and helpful for people who may not be able to understand things people try to say. I don't think most still get - that if "I choose to do this, I am done for the day, or can't do another thing later" concept, but basically that's it. I think there may be some good hints in there (bath benches, robes as towels, etc) that might help.

Another thing - if he has ever had any illness that you can help to compare it to - mono I think is a good one...and can possibly imagine it never going away...

Yes - there are things to be grateful for still! I hope that continues for you.

He has pretty severe arthritis in his hands, I told him to imagine that pain all over his body. I think the fatigue is harder for him to grasp, though... "just take a nap" doesn't work. I try to keep from complaining, so then when I can't do something he says, "you seem fine" I've been searching through that thread for tips for sleeping and morning pain/stiffness... that's been the worst part about this flare-up, I wake up constantly with burning back pain and in the morning really can't even move. We have a tempurpedic mattress that is brand new and prior to this was absolutely fantastic. Do you know if body pillows or anything like that help??

I think the organ issues is what I fear the most. The chronic infections and chronic pleurisy, pericarditis and kidney problems suddenly seem a lot more sinister now that I know they're all related and there's no end in sight. I'm still trying to gather information, but it's scary to think about :-\

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Old 11-27-2012, 09:58 PM   #8 (permalink)
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I like to sleep on a couch now (uck) - but I would give a body pillow a shot!

For the fatigue I tell people you know how you take a nap and you wake up and you have more energy/feel refreshed? Well, for me a nap doesn't add any energy but it stops me from getting more tired.

With lupus do the immunosuppressives help to stop that or do they just keep going or what? When were you diagnosed?
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Old 11-27-2012, 10:06 PM   #9 (permalink)
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Just read through all 50-something pages of the autoimmune disorders thread, thanks Jean. The search function said it would contain a reference to polymyalgia rheumatica but I never did find it. I have had PMR for the last 14 months and am on prednisone. Does anyone recall mention of PMR in that thread?
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Old 11-27-2012, 10:12 PM   #10 (permalink)
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Not a lot on it: Autoimmune disorders...

I hope you are doing okay with it.
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