Thursday, September 27, 2007


I am wondering about everyone's diet. I believe it is the tumor that turns us into carb addicts because the tumor feeds and grows on serotonin, which is why doctors prescribe dopamine in an effort to bring balance back to the brain. How much do you think about dopamine/serotonin/acetylcholine? If you've had the surgery, do you still eat as you did before? Have the doctors told any of you about the carb thing at all or about the need to change your eating habits or have they allowed you to eat whatever you please? For the record, I have not had any surgery in my treatment, just dopamine agonists and a change in my diet.

Tuesday, September 25, 2007

Yao Defen

I just watched the TLC special on the world's tallest woman. I'd heard about her previously on the Internet but wanted to see her story. It airs again on Oct. 7th and 8th. I really feel for her tragic situation.

Yao Defen Appeal

TLC -World's Tallest Woman

Ken's Cool Video

Ken just updated his blog with a bunch of good news, and also posted this cool video that he made from his MRI's! Check it out!

Saturday, September 15, 2007

Hello everybody!!

Hy! My name is Almu, and I am from Spain. I am 27 years old and was diagnosed on June 20th, 2006. This is my first post at this blog (sorry for this) I hope I can publish more often posts from now on.
Currently I am waiting for results from my second surgery, so I am having no medication at all, just Cortisone in case they damaged my healthy pituitary during operation.
I will post again soon!!

Wednesday, September 12, 2007

Update: Sando test canceled

Because the my health insurance company said they would not cover the test! What is up with that?!?? More hours on the phone talking to customer service agents, I'm sure...... I feel sorry for people that have to do that job... it must be hard defending coverage policies to sick people. Health care reform, take me away!

Kevyn Aucoin

So I was a the bookstore the other day and I saw this book about noted acromegaly patient, makeup artist Kevyn Aucoin. I remember growing up and reading fashion magazines and totally admiring him, hoping that one day I would be famous enough for him to do my makeup and make me look amazing as all the people in his photos.

Anyway, so according to this book, he was diagnosed with acromegaly on September 11, 2001. That's the same day as the WTC attacks! He was in L.A., but as a "New Yorker," this must have been an incredible DOUBLE trauma for him. It's never really clear but I have suspicions that he didn't actually die from acromegaly directly.... I think he couldn't handle the stress of dealing with acromegaly, so he got in to drugs, and I think THAT's what killed him. The EMOTIONAL part! (Well, it's hard to say if they are really separate, since hormones and emotions are so closely tied). Anyway, he was definitely in rehab after he was diagnosed. It makes me sad because I can totally identify with freaking out about having a tumor and all that, and feeling alone even if you have supportive friends and family.

Anyway, I wonder how things would have been different if he had some kind of acromegaly support network, like if he had people like us to help him feel understood and less of a "freak." I know that corresponding with all of you has definitely helped me less isolated. Maybe if Kevyn had the support that we have, he would have been able to get through the rough spot.

Anyway, if you are interested, I would leaf through this book the next time you are at a bookstore. It was kind of amazing to see discussion of acromegaly in print, because almost everything I've seen so far has been on-line.

PS this book only talks about acromegaly on a few pages, and the rest is all comments from celebrities about how much they loved him, stories from his childhood, and his makeup tips. Actually, it was kind of sweet, a lot of the celebrities mentioned how big his hands were! They would know, because his hands were always touching, working on, and in front of their faces. They would say how large but gentle and skilled his hands were.

Friday, September 7, 2007

Sando test next week!!

So I scheduled it! I'll have my sub-cutaneous sandostatin test next Thursday. They'll inject small amonts of sandostatin to see if there is any reaction, if all goes well, we'll do the intra-muscular injections once a month.

I hope it goes well. I'm not really expecting to have a reaction, I generally don't get side effects, although I'm starting to wonder what kinds of things I should be blaming my cabergoline on (my headaches? the "benign positional vertigo?" dry eyes?)

I'm going through a bit of an upheaval with my health insurance though.... I think I might switch to a managed health provider (HMO) like Kaiser. That's kind of scary to me because I've heard so many ....stories. But I've already had my surgery, and that's probably the #1 thing I would be most picky about choosing a doctor for. I'm switching over because I can't afford the co-pay on sando- it's SO expensive that even if I have coverage, I'll be paying a lot for each shot. That stuff adds up!

So I'm going to try to work with my new doctor as much as possible, and then once things get stable and normal (hopefully), I'll switch to the HMO. Like I said, I'm not doing this out of preference, it's as financial thing. :(