Raw Food Diet

I've been trying to change my diet for my health the last few years since I've had Acromegaly and as a result, high blood pressure. I grew up on a high dairy diet (I loved milk, cheese, ice cream and eggs), then as an adult I transitioned to a higher protein, higher fat diet (thank you fast food) which also included high dairy. It seems a 100% raw food diet may be much more beneficial than I first thought. When I tried to go raw before I didn't stick with it, in part due to habit and societal reasons. What I didn't realize at the time, was that I was also probably in a detox phase that was uncomfortable. If I can find the motivation I'm going raw/organic. It's sobering to think my own diet may have caused my Acromegaly. I wish there was a way to cure or reverse the condition without medications. I've already transitioned to a very low salt diet (way under 1500mg/day) and have lowered my blood pressure to a normal level so that I don't need blood pressure medication anymore. My skin also looks better, it's no longer super dry to the point of flaking, and I have less acne.

Why Raw Food?

Acromegaly Connections Chicago Event 5/21

Again, for any interested. Click the link below, when the image comes up in a new page you can click again to enlarge the details.

Mini Update

I've been lifting weights a few times a week, and jog/walking a few times a week. I've done a lot of online research. I got a lot of useful information from Bodybuilding.com on proper lifting techniques, they have some great videos.

The good news is I've been feeling so much more energy. I haven't been as depressed. I still have some issues with long distance driving causing me fatigue. And I still get extremely irritable, usually the week before my Sandostatin shots, as if the medication is wearing off. I hate everyone that week :-) I've told my children, you know the drill - ignore Mommy this week, I'll probably say a lot of horrible things that I really don't mean. I can't seem to control my outbursts even when I consciously try.

I've also noticed sometimes I still get the neck pain and headache on the left side. What's worked for me is a muscle relaxant. Once I've literally knocked myself out with that so I can relax and rest for a few hours, I feel wonderful afterward. I wish I didn't need my drugs, but they can be helpful when used carefully.

Acromegaly Connections Event 4/30

I received an email about an event in California that some may find interesting, details below.

Fantastic News!

I had lab work done in January, about 6 months since I changed from Sandostatin 40mg every 4 weeks to every 3 weeks. My GH went from 1.8 to 0.94. IGF-1 went from 379 to 356. I've been on Sandostatin around 4 years now and my numbers have never been so low, my GH had never been under 1.0 with the OGTT. My endo also stated based on my new MRI it's possible that the residual tissue may be shrinking a little. I see my endo again in June and may add Cabergoline to the treatment then.

Meeting in SF

[Karen, Ellen, Tanya, Jenny]

Ellen (way to go again Ellen!) helped organize our meeting with Tanya Angus, and her mother Karen in SF. It was great to meet them, and welcome them to our California Acromegaly family :) They were very gracious, even about meeting us right after their arrival in SF. They're amazing people, and I'm really grateful that they're both putting their lives in the spotlight to bring more attention to Acromegaly.

My own personal choice was to expose my life with Acromegaly online, and that's a much easier avenue to take. I still have fears and other issues with bringing the subject up, even among people I consider close friends. I have a fear of public speaking that I've never overcome, so having people like Tanya who can be a spokesperson for herself, and everyone else with Acromegaly, is very appreciated.

I really hope Tanya finds a cure with her unique case (unresponsive to treatment as she keeps growing - at 6'11" now), or at least more effective treatment. Acromegaly is such a horrible disease, and it saddens and angers me that her case wasn't caught quicker. There's not only the physical aspects of the condition to deal with, but the mental aspect that contributes to our delayed diagnosis. Personally, when I started gaining weight and my hands/feet became larger, I became depressed, and figured I had just "let myself go." It's almost like I was in denial without realizing it. I thought  I was a freak, or just weird with certain symptoms - like my continuing lactation years after having my last child - that I even feared telling my doctor my symptoms! And along with depression I had feelings of being disassociated from myself, and to a certain extent I still do now, as though I don't know myself or my feelings anymore. I believe these feelings are due to Acromegaly, as well the depression.

The symptoms of Acromegaly can be so insidious, that we fool ourselves into thinking there isn't anything wrong. Thanks so much to all who have come forward to share their stories.

Follow Tanya's story:

Tanya Angus - Official Site

ABC 13 News - Woman with gigantism is back from San Francisco with new doctor's orders

UCSF Update

I drove into UCSF yesterday to meet my new endocrinologist, since my old one transferred elsewhere. My day started off well with a free drink coupon from Starbucks because they were closed due to lack of hot water! But I ended the day kind of frustrated and disappointed.

I've had very minimal improvement on 40mg Sandostatin every 3 weeks. I've been looking into other options. Based on my MRI she stated that it doesn't look like I'm a candidate for re-operation. I'd really hoped I could avoid the expensive monthly Sandostatin shots, call me optimistic. I do stress about insurance continuing to pay that costly bill every month for me, although I have no basis for worry.

She also reminded me that Gamma Knife Radiation is an option. Maybe I'll try it, when they can guarantee I'll turn into a superhero. Forget Acromegaly, I want to be She-Hulk! :-D

The other option my prior endo and this one are pushing on me is trying the lowest dose of Dostinex/Cabergoline. I remember having some side-effects when I was on it before. I always seem to have side-effects with any drug, so I try to avoid them. Maybe I'll stop being so stubborn, resisting their advice. I'm a bad patient.