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Addison’s disease: Eight-weeks post diagnosis

By Robin Dearing

It’s been eight weeks exactly since I was diagnosed with Addison’s disease. I’m still very happy to have survived the whole ordeal — I doubt that will ever go away. I know I’m very lucky. On most days that is enough.

On others, not so much. Sometimes I’m completely overwhelmed.

I’m suffering side effects from the oral steroids. My GI tract is all messed up. Never having suffered chronic GI maladies, I feel stupid not knowing how to manage it. And there’s an issue with my insurance covering the meds. Blah, blah, blerg.

And then, there’s a giant rainbow zebra sitting on my chest.

See, I don’t just have Addison’s disease and thyroid disease. According to my endocrinologist, I have Autoimmune Polyendocrine Syndrome, either Type 1 or Type 2. Type 1 means it is hereditary and I could have passed it to Margaret (that is quite the weight to be carrying, let me tell you what). I’m waiting on the DNA mapping to find that out. Type 2 means that my autoimmune system is a jerk and is killing off my endocrine system for no good reason.

The med student at the hospital when I was diagnosed called mine a rainbow zebra disease. Zebras are the rare diseases a doctor looks for when all the routine ailments have been ruled out. My zebra is so rare (one website said there are 500 people worldwide with this syndrome), they call it a rainbow zebra.

Well, ain’t that just peas and carrots.

I can’t even pretend this first week back at the school routine hasn’t been rough. Not enough sleep, too much going on, my kitten keeps stealing my pen when I’m trying to write curriculum (OK, that part isn’t so bad, she’s pretty dang cute). I’m desperate for some decent rest, but my classes aren’t going to write themselves.

So onward I plow, trying to take stock in all that is good, remembering what could have been. Fetching my pen from the kitten once again. It could have ended up so much worse.
 

COMMENTS

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Hang in there. I hope you feel better soon.

Being diagnosed with a rare disease like this must be very hard, especially if it is hereditary. Since most diseases have various symptoms, you should browse around this site, it might will give you valuable clues on how to ameliorate some of them and make the treatment more effective.

Many people have been through such situations, especially those who were diagnosed with cancer or other chronic disease. For them everything has changed, but with these gifts for cancer patients, the family can help them fight off this disease and reclaim their lives back.




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