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TrillumHunter

By TrillumHunter
in Related Issues & Disorders

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TrillumHunter Enthusiast
TrillumHunter
Posted

I'm so aggravated this morning. I've been sick the last week with what I thought was a cold I couldn't shake. But the last three days my body temp, pulse and BP has been low. And, I'm feeling that deep awful fatigue again. I had been feeling much better after a series of iv iron. I was fine, just finishing up the second series and, WHAM!, all over again I'm sick. The dr thinks now my thyroid may be involved in the autoimmune process. She won't check that though because she's a hematologist. :angry: Really, I'm so over this. I get one thing fixed only to have something else crop up. What makes me incredibly angry is I was undiagnosed for so long! Surely, I wouldn't have all this trouble if my immune system hadn't been running amok for so long? But now, I get the joy of more testing, more researching and everything else that comes with it.

I've done well with the celiac diagnosis. Heck, I even have some plans to start a related business. But, I'm having trouble staying positive with all this other stuff piled on top of it. Am I never going to be well? I'd like to take a time machine back to when the first dr said it was, "probably nothing."

I'm a sad, discouraged celiac this am with more balls in the air than I think I can manage.

Where's the crying icon? :(

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missy'smom Collaborator
missy'smom
Posted

(((HUGS to you))))

I'm there on and off lately too. Too many balls in the air fits me as well. I try to let things go but all the balls are things that I can't let go-just necessary stuff for myself or kiddo. For me, I get this way especially when I am fatigued(right now just from the total sum of what I need to manage). I've been crashing and burning every weekend lately. It doesn't help that things(cold, flu) are going around too. I haven't been really sick but a little extra something just topples the balance lately. I try to just rest alot and tell myself it's just the fatigue and I'll be better when I get rested up. After so many years though, I have little patience with fatigue or naps. I have so much catching up to do! I have other issues to pursue too and delayed appointments that I should make with various healthcare providers but I'm a bit burn out on doctors and researching so have put it aside for a while. There is a time for everything and that time will come sometime. Sorry-not great advice but that's where I'm at right now. You're not alone and I'm glad I'm not either.

OK another ((((HUG)))).

nasalady Contributor
nasalady
Posted
The dr thinks now my thyroid may be involved in the autoimmune process. She won't check that though because she's a hematologist. :angry: Really, I'm so over this. I get one thing fixed only to have something else crop up. What makes me incredibly angry is I was undiagnosed for so long! Surely, I wouldn't have all this trouble if my immune system hadn't been running amok for so long? But now, I get the joy of more testing, more researching and everything else that comes with it.

I've done well with the celiac diagnosis. Heck, I even have some plans to start a related business. But, I'm having trouble staying positive with all this other stuff piled on top of it. Am I never going to be well? I'd like to take a time machine back to when the first dr said it was, "probably nothing."

I'm a sad, discouraged celiac this am with more balls in the air than I think I can manage.

Where's the crying icon? :(

I'm SO sorry that you're going through this....and boy, do I know where you're coming from!! All of the autoimmune diseases that I've developed over the years due to a lack of a diagnosis of celiac disease..... :(

Truthfully, I don't know if I'll ever be "well". I guess I've been just hoping to be significantly better. My Hashimoto's thyroiditis wasn't diagnosed until my thyroid was no longer functioning. It's basically dead. My autoimmune hepatitis wasn't diagnosed until Stage 2 liver damage (well, it could have been worse....Stage 4 is cirrhosis). I'm in a wheelchair because of rheumatoid arthritis and fibromyalgia.

However, the gluten free diet is supposed to help with the other autoimmune diseases. Some studies have shown that the anti-thyroid antibodies have significantly decreased on a gluten free diet, for example.

Also I'm starting to think I personally need to be on a stricter diet, such as the SCD so many are following on this site.

What has given me hope and motivation to stick with the diet, and even to consider a more restrictive regimen is the possibility of ALL of my conditions going into remission. Lots of people on this site have said that happened to them (gradually, over a year or two or even longer), and they were just as sick as I am now.

As Emily Dickinson once said,

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all......

Sorry I have nothing better to offer than this....I know it's sentimental! :)

(((hugs)))

JoAnn

jerseyangel Proficient
jerseyangel
Posted

((((((hugs)))))))

I loved nasalady's poem. I like to say--hope is the feeling that the feeling you have isn't permanant......don't know who said it first, but I hope it brings a little smile to your day.

Take your time, and take care :)

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