Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Have been on the Somatuline now for almost 3 years.....before that it was the Sandostatine (12 years). Though the levels are fine (actually the best they've been), it seems the effectiveness of the shot on quality of life is on a continuous downward trend....or maybe it's just the effects of the Beast are taking their toll more and more. Either way it sucks. At first I would have a couple of bad days after the shot (mostly gastro effects) and towards the end of the last week in the 28 day window, the pain in my joints and muscles would start increasing limiting my mobility somewhat......now it's more like a week after my shot that my system is whacked out and by the end of the 3rd week, every joint and muscle in my body is wracked with pain and fatigue and my mental clarity is pretty much one dense fog bank....it sucks.
Unfortunately, at the end of this month my high school is celebrating its 50th anniversary and all the previous 49 graduating classes have been invited back for a special "homecoming" weekend. Lots of events planned and classmates that I haven't seen since high school are planning on attending. The cold hard truth is that the thought of driving 14 hours to make the trip is in reality a fantasy now. Such a trip would lay me up for days and I'm not really confident that my mental clarity is up to making that drive even if the physical toll wasn't an issue.....this Beast robs us of so much.
Flying is out of the question. The change in atmospheric pressure is excruciatingly painful since the craniotomy last year and besides that, my nephew works for the FAA and even he won't fly today. As he puts it, every flight is a crap shoot and most of the time, the odds are the dice have 4 sets of craps numbers imprinted on them....and he deals with it every day. Like he says, if flying were a medical procedure, the Government would have shut it down 2 decades ago.
I guess the thought of not seeing friends I grew up with is troubling me because a number of them have already passed away and more are sure to come is one thing.....but the realization that this Beast has so effected me now that many normal things, like driving 14 hours, are no longer in the picture, and that's really depressing.
Unfortunately, at the end of this month my high school is celebrating its 50th anniversary and all the previous 49 graduating classes have been invited back for a special "homecoming" weekend. Lots of events planned and classmates that I haven't seen since high school are planning on attending. The cold hard truth is that the thought of driving 14 hours to make the trip is in reality a fantasy now. Such a trip would lay me up for days and I'm not really confident that my mental clarity is up to making that drive even if the physical toll wasn't an issue.....this Beast robs us of so much.
Flying is out of the question. The change in atmospheric pressure is excruciatingly painful since the craniotomy last year and besides that, my nephew works for the FAA and even he won't fly today. As he puts it, every flight is a crap shoot and most of the time, the odds are the dice have 4 sets of craps numbers imprinted on them....and he deals with it every day. Like he says, if flying were a medical procedure, the Government would have shut it down 2 decades ago.
I guess the thought of not seeing friends I grew up with is troubling me because a number of them have already passed away and more are sure to come is one thing.....but the realization that this Beast has so effected me now that many normal things, like driving 14 hours, are no longer in the picture, and that's really depressing.
I'm okay now....the other day was just a really pissy one. I may still be able to make it to the reunion with a former classmate. She lives in central TN and we may be able to ride down together so it still might happen.....if not, I'll have a long weekend to paint some more...........we adapt.
http://frozengamesplay.net
Did come home to some good news, Ortho has scheduled my next hip replacement for Dec. 7....that will be a relief as it locked up 3 times today and that's getting old.