Insurance Ugh!

I'm sorry, I have to post this. Is there anyone who knows ANYTHING at my insurance company?? It's like they've instructed their representatives not to give out any information about eligibility. I call in and always feel like I'm talking to myself!! These people know as much as I do. I try looking online but don't find the info I need. And every time I call in, they never know what laboratories are considered in-network, and they try to tell me that the closest in-network are 40 minutes out of town. I know that's not true because I've gone to laboratories in town and they've been covered. My doctor keeps giving me the lab slip for a lab that's not covered. Maybe they're out-of-network, but in town, but they still pay for it?? Frustrating!!

Tune in to TLC Sunday 8/7c

>> HELP! I'M TURNING INTO A GIANT - Sun at 8/7c <<
A heart-breaking look at individuals suffering with Acromegaly, a rare condition that causes the body to grow uncontrollably. These modern-day giants exhibit amazing bravery and determination to lead normal lives.

Tanya (31) - http://www.youtube.com/watch?v=HNQyHR1l-x4

Macular Degeneration

Years ago my eye doctor remarked on the fact that I had a second set of eyelashes, and he seemed surprised by that. I thought that seemed odd. Now I'm wondering if the second set of lashes is a normal thing, or if it may be another indicator of Acromegaly? The quicker someone can be diagnosed with this disease, the better.

My eye doctor also told me I had "buried drusen" a few years ago. He explained, but didn't seem to be worried about the condition. He just kept monitoring me every year. Now I'm beginning to think I'm in the early stages of Macular Degeneration. Symptoms I've had are drusen and high blood pressure (I'm actually back down to prehypertensive right now though). And in the last year or so it's become harder to read my computer monitor. I thought maybe my prescription changed, or my eyes were just getting tired quicker. It's as thought my eyes don't want to stay focused on the center of the page, but try to read around it. I've also noticed it's harder for me to tell certain colors apart, like orange and red. Those are two more signs of Macular Degeneration. I have my annual appointment in April, so I'll find out for sure then.

Meeting with Another Acromegalic

I met my first one in person today, Ellen!! I posted about it shortly on Acromegaly Bloggers, but I wanted to share on my blog a little more in depth. She and her husband were very sweet, open, and funny. Thank you Ellen for sharing so much of yourself with me. I truly appreciated it, even though I don't always show my emotions openly. I felt like we'd known each other for a long time already, since we've chatted online. I truly wouldn't have suspected she had Acromegaly if I'd met her on the street! I'm not sure if that's due to her treatment of Sandostatin? I had noticed that I thought she looked different since I'd first seen pictures of her online (prior to treatment). I wonder if the Acro monster is losing some of it's grip on me since I've been undergoing treatment too?

I remember years ago when I first started developing Acro (unbeknownst to me), and I literally felt like I was changing into a monster. Physically, and mentally I felt as if I were transforming. I would look at other people, and I recognized them as if they were a different species. I really identified with the link Ellen posted on the "Hulk" on Acromegaly Bloggers, although I didn't have the increased height of the Hulk. Anyway, I kind of expected to identify with Ellen when I saw her in that way. As if we were members of the same species :-) But I don't feel that happened. I'm not sure why, but I thought that was funny.

We talked about so many things, and it was nice to commiserate, and to share our similar experiences. I have to confess talking about Acromegaly still makes me feel like too much of a worrier, or a complainer. We do have legitimate health issues, that I can't ignore. I wish I'd had more to contribute, that I could've helped in some way besides basically affirming that we suffer from similar ailments. I know that can be helpful in its own way though, based on my own personal experience. We're not alone, and although I'm sorry she has Acromegaly too, it's also a positive thing that we share this disease. That we can identify with each other. That we're not crazy as I've thought so many times in the past :-) Seeing another person with Acromegaly who seems so "normal" on the outside was very gratifying. Living with the disease every day can be such a drag on our energy, and our outlook. But we can stay positive, and we can beat this disease to a certain extent.

I wish I could meet more of you in person. If only to hug you and say, things are going to be OK. Dealing with Acromegaly, especially in the first few months is such a shell shocking experience. But so many people I've talked to have gotten through surgery, and started treatment, and started to return to semi-normal lives. Yes, we still live with the disease, but so many of us have almost beaten it. I've never been to a therapy session for Acromegaly, or for people with tumors or cancer. In many ways this blog has been my own little therapy session. I hope everyone is doing well. In fact, it would be nice to have updates on how people are doing. I worry when I haven't heard from people for a while. Worrying is like my full time job :-)

A Bit of Good News!

I think many of the symptoms I've been having in the years since my surgery are not actually related to the acromegaly. I've kept telling my doctor and my endocrinologist about my symptoms, and they've kept testing me for different things that I may be deficient in. I even thought maybe my pituitary wasn't functioning correctly, so maybe I was experiencing early menopause. But my lab results always came back in the normal range.

It's funny how things seem to happen by chance. Our insurance was requiring us to start getting our maintenance medications by mail order. So I was going to have to switch from the Diovan 80mg to a generic alternative. When I was researching that alternative I learned of all of the side effects of this medication, which were also side effects of Diovan. Apparently I never read through my instructions on Diovan thoroughly enough. When I'm experiencing so many different symptoms, over a gradual period of time, I guess it's hard for me to think they may be related.

The problems I've been having in the last few years: headaches, muscle and joint soreness, heart palpitations, fatigue, sore throat, dizziness, memory issues, blurred vision, etc. I also think I've had some hair loss, and may have had a small case of pruritus (a sensation of wanting to scratch an itch). Many of my symptoms seem to have been on the lighter side, which made me assume they were normal. I didn't even realize they could be side effects. But I'm hoping that they are side effects of the Diovan.

I always told my doctors I didn't want to take any medication unless I had to. Still, my primary doctor started me on a daily dose of 80mg Diovan. I can understand his concern for my health. But I wonder now why he never suggested I start at a lower dose. At the time my blood pressure was around 140/90. I recently told my doctor since my blood pressure had been controlled very well in the last few years, that I wanted to try to get off the medication gradually. He told me I couldn't get off the medication. Well, I decided without his approval to start weaning myself off the medication, even though I know that's not recommended. But besides the high blood pressure, and the fact that I have Acromegaly, I'm in good health.

Before Acromegaly, my blood pressure readings were always 120/80. I started taking the Diovan every other day for a week, then half a tab every other day for a week. I monitored my blood pressure in the morning, afternoon, and evening. At the 40mg every other day I'm feeling a lot better, and my blood pressure readings have been staying about the same or decreasing. On the 80mg it was around 120/80. I've gotten down to 116/73. I'd love to stop taking the medication altogether but I doubt that will be possible. I tried to go homeopathic with the apple cider vinegar a while back and couldn't stand it :-) But if all of my symptoms were actually side effects of the Diovan, I think I'd take anything over that. My health problems have had quite a negative effect on my quality of life the last few years. I've felt more like a 60 year old woman, than a 32 year old. I'm thankful that I may have finally found an answer to so many of the problems that have been bothering me :-) I'll keep you posted on my progress!

Pinched Nerve - Acro, Genetics, just getting older??

I always want to attribute every new weird medical problem I have to Acromegaly :-) I'm not sure that's what's causing it in this case. I've had a pinched nerve in my leg now for the last 5 weeks, possibly caused after I did some digging with a shovel. The pinch didn't happen immediately after, it was a couple days later. I wouldn't think a little digging would cause a problem like this for a 32 year old, but I could be wrong! I was told after x-ray that I have spine arthritis in the T4-T8 area, with some disc thinning. The Dr sent me to physical therapy and told me I can exercise, but should avoid lifting over 50 lbs, and back contortions (no yoga for me). The last few weeks resting, elevating the leg, and heat have really decreased the pain. Increased activity seems to make the pain worse. My family has a history of back problems so genetics may be playing into the equation.

I've also noticed that there seems to be some relation between repetitive actions and increased muscle aches for me. I'm an avid reader, but I've purposely avoided reading lately. The pain and tightness on the left side of my neck and shoulder (and headaches on the left side) seem to have gone away. I'm wondering if the pain was caused by too much reading, holding the book in my left hand for hours at a time, day after day. I've noticed at other times when I overdo things my muscles ache as well. But I don't think it would be overdoing it, these actions don't seem like they should be that detrimental to a person the same age without Acromegaly. Or maybe I'm just getting old! :-D I may be grasping at straws but it makes me wonder!

Good News!

Yay :-) Dr. Ku just called to tell me my labs were good. My GH was 1.5, and my IGF-1 was 377, with a normal range for my age of up to 368. So I'll be getting another check-up in 4 months.