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The Learning Curve: Life is a Roller Coaster

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This is very long… I’m writing it for myself, mostly, a record, a way of purging the thoughts in my head, but also, I know there are others out there like me who are struggling with a diagnosis, struggling with doctors who don’t understand, struggling with family and friends who mean well but don’t ‘get it’… and if you are like me, you scour the blogosphere, the health boards, the forums and look for anyone who might possibly ‘get it’, or who might have some insight into why things are the way they are.

If any of these conditions exist for you, maybe someone will benefit from my story… if not, don’t feel obligated to read. This is just more about me, for me, put out there for whomever it might help.

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It’s been about a couple of weeks now since I got a more detailed information about what is really wrong with my health. I’ve been on 60mg of Prednisone daily since then. Well, correction: I’ve been given up to 60mg I can take per day, but I’m not necessarily supposed to take that much if I don’t need that much. So I take 20mg in the morning, then dose in 5-10mg increments throughout the day as I need them. How I know I need them right now is tough: I wait until I have symptoms. That is, if I get shaky, feel pain, the nausea comes back, etc, then I know I need a dose. I take the smallest dose possible, then every 20 minutes I increase it by 2.5-5mg until the symptoms go away.

Unlike a diabetic who doesn’t make enough insulin and can measure blood sugar to see how much to dose, people who have adrenal insufficiency–not just adrenal fatigue or exhaustion but rather actual insufficiency (It’s called Addison’s Disease, but it’s part of a bigger issue called PGA-II – more on that later)–there is is no test I can do to see what my cortisol levels are immediately and adjust. So the only way I can dose is to see how I feel and know and trust that the medication does make the symptoms go away once I get it to the right dosage.

This means that I have to let myself feel bad sometimes in order to feel better.

LIFE IS LIKE THAT THOUGH (more…)

I found me! Update & Stuff

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Okay, so for those who have been following my health saga, you probably know what’s going on with me. For those who haven’t, I’ll briefly update. I got a couple of diagnoses from different doctors, and none of them agreed with the other ones. It’s very frustrating when doctors can’t agree. How is a patient supposed to know what to do? One says to take steroids because I have Addison’s Disease, and he bases this decision on blood work and lab tests that clearly show my natural steroid level is low, and prescribes me steroids, then tests me again in a month and my natural steroids (cortisol) is still low, so he ups them again. Another looks at a middle aged overweight woman and without even looking at any blood work or lab tests, says there is absolutely no way I can have Addison’s Disease and to tells me to stop taking the steroids, immediately.

So I did. Not because I really wanted to, but because he ordered a second $500 ACTH stimulation test to try to prove to me that I don’t have Addison’s Disease. I stopped taking the pills the other doctor had given me to prove to him I do, because I know the ACTH stimulation test will be the same again if I take it. I knew it was right. Why in God’s name I didn’t stand up for myself and tell him that in the office I will never know. I think I was just defeated. (more…)

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