Wednesday, July 25, 2012

A New Chapter?

I'm sorry for the negativity I've been projecting lately. When I become very tired and stressed (it seems like even little things stress me out these days) I become very cranky. I've been trying to learn to recognize how I feel in advance to curb my negative behavior, but it's hard. I'm frustrated by my lack of options in treatment, the negative effects of medication, and the negative effects of having Acromegaly. It's a difficult disease to live with.

I think rather than continue my dissatisfaction with my treatment, and with UCSF right now, I will see if I can return to Stanford for a new opinion on my care (thankfully I have a PPO now, more options). And maybe I will find an herbal supplement to help with my stress issues? I wonder how everyone else with Acromegaly deals with the angry outbursts? I feel as if I can't control my actions sometimes, like a child having a temper tantrum. At first the Sandostatin seemed to help with that. Maybe 40mg every 3 weeks is too much for me? I've started gaining weight again, I've had GI issues, my hair is extremely dry and seems to have stopped growing as much and is turning completely gray at 35. It's so tiring trying to determine the proper care for myself. I feel like I can't trust any doctors because they truly don't know what I'm going through, and they don't have the experience with my disease to help me. All they can tell me is what the numbers should be on paper. They might look right, but something's not right.

Saturday, May 12, 2012

Wishing for a Miracle

Five and a half years after surgery and I'm so tired of dealing with Acromegaly and the medication. My diet sucks. I'm constantly trying to tweak things to find a normal, healthy diet. But I can't stick with it more than a couple weeks. My hunger overtakes my will. Same with exercise, only my fatigue overtakes me.

Julie was commenting on her blog (Acromegaly and Me) regarding working and Acromegaly. I think it definitely makes it more difficult, I just don't know to what extent. Last fall I joined 2 parent clubs, and I just recently started working as an office assistant 10 hours per week (in addition to the care and constant taxiing of my 3 children). My blood pressure went from 130/80 to 160/100. I was feeling the stress for sure. I became kind of alarmed and tried a diuretic under doctor supervision (I've tried I think 3 other BP meds before with negative side effects). My BP went to 120/80. Great! But I've been thinking it interferes with my Sandostatin. I'm tired all the time, brain fog is worse, I'm having headaches/neck aches again, sciatic issues are flaring. I had been doing great on the Sandostatin alone with less stress. *Sigh* I feel like I can't win, there is no solution. I've quit one parent club. Maybe I can quit the diuretic and up the Sandostatin so I can possibly function without BP med. I knew I still wasn't at "normal" even on the 40mg every 3 weeks, no matter what the doctors or numbers say. I know my body and it wasn't there yet. And there's the additional worry that at some point my insurance might somehow drop me, or try to delay my care because I'm too expensive. I don't want to be this expensive!

I'm encouraged to hear Julie is on 60mg LAR every 4 weeks and feeling fantastic. I think it's funny though, my doctors (fellows) at UCSF kept telling me I was maxed out at 40mg, and were pushing the idea of Cabergoline. I hate pills, side effect city so I resisted. What do they know anyway? Sure as hell not enough about my disease till they've lived it.