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Old 11-27-2012, 11:15 PM   #11 (permalink)
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Meh, not so great right now, having a bit of a relapse. Thanks for asking Thanks also for the location, somehow I missed that.
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Old 11-27-2012, 11:20 PM   #12 (permalink)
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Poop. I am sorry. What kinds of things happen?
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Old 11-28-2012, 03:39 AM   #13 (permalink)
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Quote:
Originally Posted by LoveEcho View Post
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?
I don't have lupus but I do have a different autoimmune illness that I've lived with for over 20 years.

There are a lot of good support groups on the Internet and and it really helps to talk with people who are going through the same issues you have.

Here is a really good article that talks about the emotional aspects of Chronic Illness. http://f1.grp.yahoofs.com/v1/cLa1UPF...ECTS%20OF%20CU
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Old 11-28-2012, 03:48 AM   #14 (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.

I think only those of us that live with chronic illness really get the spoon article, but it does help to know that others out there do understand.
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Old 11-28-2012, 10:24 AM   #15 (permalink)
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Poop. I am sorry. What kinds of things happen?

Don't want to hijack the thread. Sending you a pm.
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Old 11-28-2012, 02:21 PM   #16 (permalink)
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We do research here on SLE and a bunch of other autoimmune disorders, though most of the patients are children. If you are interested in looking into the current research on SLE, I'd recommend going to http://www.ncbi.nlm.nih.gov/pubmed and searching for SLE and lupus. The papers are going to be highly technical, and some you have to pay to read, but they may be of some use to you in learning the current understanding of the immunology/biology of this disease and deciding on treatments. Unless your doctor is an SLE specialist, you will likely end up knowing more about the disease than he/she does and I don't think that is a bad thing at all.
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Old 11-28-2012, 02:24 PM   #17 (permalink)
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I'm sorry to hear about this ... for all of you that have autoimmune problems.

My very first boss's wife (over 20 years ago) had lupus. I ran into her this summer and she was doing quite well ... she would be in her late 60s, early 70s.

Not an answer for you LovesEcho ... but hope that you can get it under control and live a long life!!!

Hugs to all of you out there!
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Old 11-28-2012, 02:54 PM   #18 (permalink)
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Sorry for your troubles...but at least with a diagnosis, you can now be cared for in a manner that seems like care is part of the equation, whereas without one, a patient can languish for too long a time because they don't know how to proceed.

May your journey ease as a treatment is reached!
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