I can't believe it. I just realized in 3 days it'll be one year since I had surgery. I guess I should do an update :-) I'm doing really well now (knock on wood). A lot has improved since surgery, and even more so since starting the monthly Sandostatin LAR shot back in April. I feel almost normal again. I have an appointment the 18th with my endo in S.F. to check my levels again.
After surgery my depression seems to have completely gone away, where before it was chronic (YAY!). I'm still fatigued daily, and I notice that I tire easily doing simple things like getting on the computer, socializing, and driving long distances. I get headaches and neckaches often. Tylenol and Advil are my friends. My BP is under control with meds (Micardis at the moment, switching to Diovan end of month). My GH and IGF-1 are controlled. Most of my soft-tissue swelling has gone down now. My nose is back to normal size. I've gone down about 2 ring sizes to a size 7 I believe, and I can fit in my 8 1/2 shoe again!! (Down from size 10). My weight is good at 135, but I still get extremely hungry at times. My hair still seems to curl too much but I've discovered the straightening iron. I have to stretch before any exercise now or I'm extremely sore afterward (I may just be getting old in this case, I did hit the 3-0!). And I notice I still have the beginnings of TMJ. Luckily I'm not in pain but opening my mouth is awkward at times, and I deal with the awful clicking sounds/feelings.
My biggest complaint is probably wishing I knew more how to control my illness, wishing my doctors could provide me with more information. Some days the headaches, neckaches, and fatigue are unbearable (I know my limitations better now, and when I need to rest - I rest!) I get juggled around between endo's in S.F., and I never seem to have the same doctor. All they seem to do is tell me my GH and IGF-1 and not much else. At the same time I realize I could be much worse off and I do realize how lucky I am.
I've received a lot of contact lately from other acromegaly sufferers (a pleasant surprise!). It's great to hear from you and swap stories. I hope things are going well for all.
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2 comments:
"...I've discovered the straightening iron"
It's funny I saw you mention the hair thing before. My hair turned to straw and got frizzy with the tumor, too (I think) and it sort went back to the way it was but not entirely. I just started using the straightening iron, too!! What a difference.
I have received some contact, too. Mostly women, too which is nice because I thought I was alone in this when I was diagnosed years ago. It's "rare" so I didn't expect to meet so many people that I could read stories about. Y'all have been a tremendous help to me...(sanity check, ya know?)
Glad to hear that things are going so well at your one year anniversary mark and I hope it continues to improve for you. You look great, BTW! Hope you're able to find an endo that will stick with you. It's always nice to have the doctor know you as a person and not just another patient wanting to know what her numbers are.
Isn't it astounding how much of a difference hormone levels can make on so may aspects of your life? As in emotional AND psychical.
We are lucky that we were diagnosed so that the issue could be dealt with!
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