Thursday, November 19, 2009

To say something or not?

I've always wondered if I should say something to strangers I see that exhibit signs of acromegaly. I have never actually said anything because I worry it might come across as rude, or it might be unnecessarily alarming, but this article is giving me second thoughts about holding my tongue:

I'm curious, have any of you ever been approached by a stranger about your acromegaly, or have you ever approached a stranger (or friend or loved one, even) that you've suspected to have acromegaly? If so, how does one go about bringing it up?

Friday, November 6, 2009

What Helps? (Part 2)

Remember the post a few months ago about little tips to help deal with acromegaly? I want to highlight a few tips that have come up since the original post.

1) One thing that seems to help ALL the symptoms is to AVOID STRESS. Everyone agrees that we should avoid stress, but how? Everyone has their own way to deal with it, and some are more constructive than others. Prayer, meditation, exercise, stretching, massage, proper sleep, therapy, change of environment, whatever works for you- just don't let stress build up! Stress has a real effect on your body, just like toxins from the environment do. I'm convinced there is a link between stress and acromegaly.

2) Become an advocate. Sometimes when I'm feeling down and a little sorry for myself, I find the best thing I can do to pull myself out the rut is to think of a way to help others (for example, I hope this blog helps others). You can share your experience, educate those around you, raise awareness, and provide support for others that are in need. I feel so much better if I can help just one person avoid unnecessary suffering. I firmly believe that discoveries about acromegaly are going to come from within our community, as a direct result of our own activities. Because our disease is so rare, we can't rely on the rest of the world to fix things for us. We have to work to make things better ourselves!

3) FIND FRIENDS. I don't know where I'd be right now without the support and insight of my fellow acromegaly bloggers. I still remember the first time I "met" someone with acromegaly (it was Jason, via email), and what a thrill it was to stop feeling alone, and to have my experience validated. I recently got to know someone locally with a chronic rare disease, and while his disease is not the same as acromegaly, we were able to share our experiences and give each other tips and encouragement (actually, talking to him is what inspired this post). Having someone who truly understands (not just imagines what it must be like) makes such a difference. If you haven't yet checked out some of the support groups (see the sidebar to the right), you should!

Monday, November 2, 2009

Clinical Trial Reject

I just got of the phone with my endocrinologist- my bloodwork from last week came in and my IGF-1 and Growth Hormone levels are too high for me to qualify for the clinical trial. I have to admit, I'm pretty disappointed. I was really excited about trying out the new treatment, because I really thought it would make my life so much better - I would almost be like a normal person, because I wouldn't have to think about my disease so often. Both the endo and I knew that the current treatment (30 mg Sandostatin /4 weeks) wasn't quite cutting it, but I was hopeful that the experimental thing would work better. Now I don't even have the opportunity to try it out.

The morning I went to go in for my blood draw, I was running late, I had just finished working over a really stressful weekend, and I went to the wrong room in the hospital and couldn't find the nurse I was supposed to meet. I wonder if all of that stress elevated my IGF-1 and Growth Hormone levels.