Wayne, Self Injecting Somatuline Autogel

Wayne put together this fantastic video showing how he self injects Somatuline Autogel! I really love that we get to see him "in person" in this video and he's so calm and straightforward about a potentially intimidating process!

"Social Study on Acromegalic Experience"

Has anyone else gotten an email about participating in a "Social Study on Acromegalic Experience," which involves having an ethnography done?

I just got one this morning and was wondering if anyone else has more details.

What Helps?

I was noticing all the little things I do to deal with my acromegaly symptoms, and I thought I'd share even though most of them are small actions. Do the rest of you have strategies on dealing with symptoms that you can share? Please comment on what helps you! Of course, this is on top of doing everything the doc says (meds, etc).

Swelling in legs and feet:

• Sleep with legs elevated on pillows
• Avoid salty/packaged foods
• Drink lots of water
• Loose a little weight
• Socks made for diabetic people
• Move around as much as possible, don't sit or stand in one place too long

Aching in joints:

• Heating pad
• Avoid dampness
• Massage (loosens the muscles around joints that are tight)
• Avoid stress

Headaches:

• Traction - basically I lay in bed with the back of my head hanging off the edge, so gravity lengthens my neck
• Don't sleep too much
• Exercise
• Massage
• Avoid stress

Digestive irregularity (due to medication)

• Diet of mostly fresh foods
• High fiber diet
• Drink lots of water

Acne:

• Avoid sugary foods
• Exfoliate

Tiredness:

• Eat as much fresh food as possible (avoiding "heavy" foods, sugary foods, processed foods, etc)
• Exercise (this one is hard, esp. when you're already tired, but it really helps!)
• Fun activities (helps you forget you're tired!)

I'd like to point out that low sodium and high fiber diets also help prevent two diseases that people with acromegaly need to be careful about: heart disease and colon cancer. I have found that the more I do for my health in general (exercise, eat right, rest, avoid stress) helps my acromegaly symptoms.

CLINICAL TRIAL!!!

I just got off the phone with my endo- he called to ask if I would be interested in participating in a study on a new delivery method of Sandostatin (well, it's basically the same stuff, but different name) that would last for 6 months! Instead of a shot, it would be small pellet that is implanted just under the skin on the arm (they apply novocain so supposedly it won't hurt). I vaguely remember reading about something like this a while back. Once every 6 months!? That sounds so great! I might almost feel like a normal human being free from the tangles of waiting rooms, chemo centers (that's where they administer my shot sometimes), exorbitant parking fees at the hospital, random nurses (some are wonderful, some don't follow the directions and stress me out), recurring copays, or when I have the shot at home, needles, prescription refills, pharmacies, and boxes requiring constant refrigeration!

I'm not 100% sure I'm going to go through with this, but I'm very interested- what do all of you think?

Anyway, I asked him if It was OK to share this information with all of you, and he was very open to the idea. If you are in the Northern California area and you are interested in finding out more, please email me and I'll be happy to pass along my endo's contact info! From what I've heard, they're only accepting people during the month of September, and you have to have your levels currently "controlled" (within 20% of normal) on a dose of Sandostatin that you've maintained for a minimum of 3 months.

Clear the Path, Life is Waiting...

I had a very interesting weekend dealing with friends and their psychological limitations. Now I am in no way a psychologist, or even a social worker. But as a fellow acromegalic and high school teacher, I feel I am somewhat of an expert in how people can be cruel to those who look “different.”

One friend was acromegalic, and one was completely healthy. My friend who was acromegalic was invited to a party where they had not seen people since before their diagnosis. My friend who is in perfect health was afraid to attend a gym because they may not be as strong as their contemporaries. While these people are on different life paths, the similarities in their reasoning were striking to me. Both friends were primarily worried about what other people would say if they chose to participate in their individual social activities. While I am sympathetic to their fears, my own experiences made me feel badly that they were voluntarily standing in their own way.

Before I was diagnosed with acromegaly, I was tremendously obese, I was 6’3” and weighing in at just under 350 pounds. My shoes were size 16, and my hands BARELY fit into XXXXXL gloves! As to the gym, when I did try to go to the gym, I was barely able to do anything without my chest hurting. In hindsight, it was probably the tumor, but at the time I heard the whispers when I couldn’t hack it at the gym(which may or may not have been limited to my own brain): how do I expect to get my heart healthy if I don’t exercise because its too tiring. What a loop! If I go to the gym, I feel lousy and fear people are ridiculing my workout ability. If I don’t go to the gym, I feel lousy and fear that people are ridiculing my weight.

After diagnosis and treatment, I lost a good deal of weight for about six months before it started creeping back up. I was at a crossroads. I didn’t want to gain the weight back, but how I feared what others were saying. So I started to just watch my diet. Eventually that weight loss plateaued and I needed to either accept where I was stuck, or risk ridicule. I finally decided to take the plunge, laughing be damned. While I felt like everybody was looking and laughing at me, eventually I noticed that most people were busy working out, with no regard to anyone else in the gym. Most people there were either they were in love with their own look, or were worried about the same thing I was: ridicule from fellow members. After that epiphany, I was able to go work out at my own pace without fear of ridicule. And yes, I did see people laughing at me from time to time, but by then I was far enough into my routine that I just didn’t care. Parenthetically, this morning I was at the gym and noticed a guy doing cardio who was tremendously overweight. My first thought was, good for him! He took the first step!

So what does all this have to do with Acromegaly? Acro’s are typically very self-conscious of how we look. “Chris” chose not to go to the party because of a fear of ridicule. This is a shame because Chris is a very kind and generous person and I am sure that the party was poorer for Chris’ absence. Moreover, I am confident everyone else going to the party was afraid of something embarrassing including (choose any or all): weight loss/gain, job/career status, clothing label, paycheck, kids, house, life goal, addictions, fears, etc. We don’t need to apologize for our own inadequacies because most people are too busy focusing on their own shortcomings to notice what we fear most about ourselves.

My friends, I am both happy and sad to announce that no one ever really leaves behind the pettiness of high school. It is sadly unavoidable that people will always judge other people; and I am sure that at one time or another we are all guilty of it. The trick is to not let other people’s value of you paralyze your life. When we choose to not be social because of fears over that which we cannot control, we stay home and trap ourselves inside our own brains with our own endless chants of inadequacy, ensuring those negatively skewed self-evaluations will set in mental concrete. We have an obligation to those we love, and those who love us, to battle those insecurities and live every moment to the best of our abilities.

I admit that some days are better than others and when the acro is running your body, it can be tough to face the world. On sick days you may need to take it easy, and that is fine. But on those other days when we are healthy but may be feeling a little crummy about ourselves, I feel that those are the days we need to work extra hard to face the world. Worst-case scenario, we go out and have just as bad a time as we feared we would. But in all likelihood, if you are social, something good will happen while you are out. Even just faking it can change your mood for the better… you will have far more fun than locking yourself in the house. Who knows, maybe you go out and have a wonderful time and make new wonderful memories.

We only have one shot at this life. We need to make sure that we do waste a single day because of a fear that someone you don’t know may disapprove of you. Go have a great life, and if someone tries to stand in your way, walk around them and keep going!

Are you alone? No!

So you have been diagnosed with Acromegaly. If you are anything like I was, a small amount of congratulations is deserved. I know that I was complaining for almost ten years about how lousy I felt, and finally being diagnosed offered a certain modicum of relief. However, if you were more like me your next question was, what the hell is that?!

Welcome to one of the largest tiny groups in the world. There are no stickers, no fundraiser cut outs of scrap paper sold at fast food restaurants, no ribbons, and most critically no personal support groups to help you after diagnosis. Most acromegalics could go their entire lives without ever bumping into another soul who can empathize with what you are feeling. That was the worst part for me. One night I was sitting alone in the darkness, trapped with my thoughts. Am I really alone with this? Are the medication side effects normal? Why do I still have days when I’m tired? How do I explain to a date that I have a tumor in my head? And of course, the ultimate… am I going to die? When I was diagnosed, I had a number of family members dealing with ‘high profile’ diseases, so I felt guilty if I ever complained that I felt horribly. So what is a person to do? Well I decided to look for support. I started by going to a support group for people with brain tumors. While everyone was very nice, it was very clear that this was not a good fit since everyone else had cancer. When I looked for groups that helped people with just ‘average’ tumors, I found none. So I decided to do the next-best thing and lift the metaphorical window to scream out at the rest of the world. “Hey, is there anybody out there?” While it took a while for anyone to answer back, it did happen. And now I am proud to have friends around the world.

And where can you scream that the whole world can hear you? Well the internet of course! While acromegaly is an ‘orphan’ disease, there are still a number of us orphans all over the world. While my quest started slowly with the creation of a group in MySpace, that eventually evolved to a group on Facebook. A few years later as I became more actively involved in the Acromegaly community, I eventually made the full commitment of patient advocacy and created a free-standing website called AcromegalyCommunity.com. When I created this website, it was my dream that this website should offer support for all people touched by the disease regardless of education level or experience with the disease. There is something for everyone.

Acromegaly can be a very lonely illness. I know this beyond a shadow of a doubt. But the thing about loneliness is that you can minimize that feeling if you can introduce yourself to people who are experiencing similar issues. While it would be nice to feel the warm embrace of another acromegalic, you may be the only one in your town. Then again, you might not. But the odds of actually meeting someone else is probably small.

The bottom line is that you are not alone if you choose not to be. I love our gang. I know for certain that our friends span at least three different continents, and dozens of different countries. But what really makes everyone so great is that we all come from our own backgrounds and experiences, but we all have that one same horrible thing in common.

So I would like to welcome you to our community. Everyone is welcome. I would love to hear your feedback. What do you like? What would you like to know?

Join us at AcromegalyCommunity.com and be with people like you.

Exciting breakthrough

So, I was reading, drinking a morning cup of coffee and ran across this article and just had to share this here. I am very excited about this discovery.

New Fluorescent Silicon Nanoparticles Discovered

Read article here: http://www.laboratoryequipment.com/news-fluorescent-silicon-nanoparticles-070109.aspx

I see this as an exciting promise for the future of all acromegaly patients. The implications of this technology is immense (in my opinion). Can you imagine where upon diagnoses of having a pituitary tumor nanoparticles mapping out that patients endocrine system and identifying exactly all glandular functions. WOW!!!!! There is hope..... Answers/help await just around the corner.
as always just my opinion,
moge