I just realized this morning that it's coming up on a year that I have been writing this blog. I never expected my Cushing's saga to go on this long and certainly never expected to still be writing about it. And yet the winding road of my particular medical malady continues to stretch out in front of me with no end in sight. It's frustrating, confusing, ridiculous and ultimately boring as hell. I get so tired of being the sick one. Especially since I was the healthiest person I knew up to a couple of years ago. I look forward to the day when I can shut this blog down after proclaiming the end in whatever form and function, of my Cushing's. It looks like I'll be looking forward to that for a while longer.
The news this week came in the form of the results of my blood and 24 hour urine (pee in a jug) tests last Friday. It seems that my cortisol level went from very high (Cushing's) to very low (adrenal insufficiency) in the span of a week. You might now be saying to yourself "wow, that Metty really did it's job", but even Metty isn't that good. We had increased the dose based on a slight decrease in my cortisol level the week before last, but not nearly enough to send my cortisol level through the basement floor. So what happened? Here's where the story just keeps getting better. We think my tumor has just decided to go rogue.
When I went off Muffy, it was because my cortisol level had dropped very low sending me into adrenal insufficiency. At the time back in May, we chalked it up to a reaction to Muffy. My cortisol level bounced around for a while and eventually roared back to it's off the charts level. Now the same thing is happening again. Without Muffy to blame, and Metty not being in place long enough to have this effect, we are falling back on an explanation that was bantered around back in May - maybe the tumor that we can't find that is causing all this havoc in my system is just doing it's own thing. Maybe it's alternating it's messaging to my adrenals between "go go go produce produce produce!" and "stop stop stop don't do anything!". While I do appreciate the irony and flat out ridiculousness of that possibility, I must say it's not really what I want to have happen in my body.
How do you medicate something that is not being consistent and shows no signs of cooperating with the laws of consistency? Good question, we're working on that. Bottom line is that we're holding until we get the results from tomorrow's blood and urine tests to see what the little rat bastard tumor decided to do this week. If my cortisol keeps ping ponging around, we may have to block it completely through medication and dose it back in with another medication. GAH!
So, sadly it looks like this blog will be here for a while longer. The only thing I can guarantee is that it won't be dull!
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