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Sun Dec 7, 2014, 04:21 PM

Arrrrggggg! So, I have an autoimmune disease, as do three of my daughters.

I have secondary mild fibromyalgia, and one daughter has more severe primary fibromyalgia. I can really understand that she has days where she really hurts, and that her energy is limited. I've seen this kid really work to overcome her obstacles, to get on a workable medical regimen and to build up her strength. Yet I still have to deal with family members, including one with medical training, who seem to believe that she is making all of this up and really needs to be given some tough love so she will stop being lazy.

I've been coming out of a flare the last week or so, and was feeling kind of punk and dragged out. I looked really pale, and considered for a minute whether I should use some blusher. Then it occurred to me; this is about the only time I've looked as washed out as I felt. I left the make-up off, letting my body signal to others that all is not well with me.

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Reply Arrrrggggg! So, I have an autoimmune disease, as do three of my daughters. (Original post)
hedgehog Dec 2014 OP
Warpy Dec 2014 #1
hedgehog Dec 2014 #2
ProfessorGAC Jan 2015 #4
hedgehog Jan 2015 #5
mopinko Dec 2014 #3
libdem4life Feb 2015 #6
lady lib Apr 2015 #7
pnwmom Jul 2015 #8

Response to hedgehog (Original post)

Sun Dec 7, 2014, 04:30 PM

1. Yeah, I do that, too.

My best friend said she could always tell when I was headed back to the hospital because I'd start looking healthy with nice pink cheeks and slightly feverish bright eyes and she was always right, she knew before I did.

Ghastly pallor has long been my friend, letting everybody know I wasn't strong and allowing me to beg off social occasions I'd rather root canal my teeth with a slow Dremel than attend.

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Response to Warpy (Reply #1)

Sun Dec 7, 2014, 04:33 PM

2. Many of us with autoimmune conditions are dealing with an invisible

disease - unless your joints are swollen, no one believes they hurt, they can't see the pain in your muscles, they can't see how hard it is to walk across the room sometimes. I think we do have to learn to let our bodies speak when they can instead of covering up.

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Response to hedgehog (Reply #2)

Mon Jan 5, 2015, 11:28 AM

4. Preach It

I have had MS for >20 years. Because it's not a debilitating case, the pain and spasming i get might as well not exist. "How bad can it be, you come to work every day? You play golf? You walk the dog?"

OK, nobody actually says that, but i can tell they're thinking it. Don't need to be a mindreader to pick up the vibe.

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Response to ProfessorGAC (Reply #4)

Mon Jan 5, 2015, 11:59 AM

5. Going in and out of flares is another problem -

sometimes I can do what I want to, sometimes I can't!

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Response to hedgehog (Original post)

Mon Dec 15, 2014, 10:26 AM

3. yeah, i may need a doc at my divorce hearing.

not really, but he always swore he understood, but i also knew that deep down, he didnt.

one good thing about being alone- no one to answer to, even subtly.

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Response to hedgehog (Original post)

Fri Feb 20, 2015, 04:12 PM

6. I highly recommend The Wheat Belly, by Michael Davis, MD...miracles are reported.

 

It's all about gluten, diabetes, autoimmune diseases...and it seems to work...and it doesn't cost anything. If it's a fad, it's a pretty darn good one, IMHO.

http://www.wheatbellyblog.com/

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Response to hedgehog (Original post)

Wed Apr 1, 2015, 05:29 PM

7. I was recently diagnosed with Hashimoto's Disease

and I've discovered that nobody wants me to talk about it. Not my doctor, who just referred me to an endocrinologist, not my adult daughters who likely inherited the potential to develop the same condition. I've tried talking to them about curbing their gluten and dairy consumption to hopefully head this off, but they won't listen (and they're very smart and well-educated). It really is an invisible disease and you really are on your own. Thank goodness for some very good books like Wheat Belly Total Health and Susan Blum's The Immune System Recovery Plan.

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Response to hedgehog (Original post)

Sun Jul 5, 2015, 06:45 PM

8. Mine mostly disappeared

after I had to go on a gluten-free diet because of gastro-intestinal symptoms. It was wonderful and unexpected bonus to stop aching, too.

Let me know if you'd like more information. Classic cellac isn't the only form of serious gluten-sensitivity.

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