Tuesday, September 22, 2009

Happiness and Acromegaly

This was a piece written by Ayaka, one of my friends in the Acromegaly Community family.

People around me often say, “You’re always smiling and looking really happy.” In fact, I always try to think about good things, so that must be why I smile all the time. Not only that, I also think it is wonderful for me to just being in this world alive and to live a normal life, so I feel quite happy. However, my smile is possibly a byproduct of my so-called “intractable disease” in Japanese medical system. My smile is my greatest strength. By smiling, I am also trying to repay the kindness of people who have supported me in so many ways, and if possible, I wish I can give people some hope through my smile.

My disease is a chronic illness, called “acromegaly.” Acromegaly is incurable. It is not associated with lifestyle, and the cause of this disease is unknown. Approximately 4-6 out of 1 million are diagnosed with this disease each year, so it is a very rare disease.

Acromegaly is a medical condition where you have too much growth hormone in your body. It is due to a growth hormone producing tumor on your pituitary, which is located under the hypothalamus. I had a tumor, measured about 7cm on my pituitary. I was twenty-four when I was diagnosed. This big tumor compressed my optic nerves, so I lost peripheral vision. The first surgery of my life was a neurosurgery.

At that point, I had not yet experienced any serious illness, so I did not know that the surgery was merely the beginning of the life with a medical condition. The surgery itself was a great success, but my life after the operation became pretty difficult.

At first, I absolutely hated needles, and I was scared of and hated the monthly blood tests and intramuscular injections. Particularly, the needle for the IM injection was 19 gauze and 1.5 inches long (about 3.81cm). I would felt, “I can’t stand the injections with such a big needle every single month for rest of my life. It’s impossible…” The side-effects of this medication include but not limited to the pain from the injection, fatigue, abdominal pain, diarrhea, anorexia (loss of appetite), depression, light-headedness, and headache. What is more, one dose of this medication costs ¥60,000-70,000 JPN (approximately $600-700 USD). I need to receive one dose each month. In other words, my monthly medical expense is at least ¥60,000-70,000. “I can’t believe the shot is painful, side-effects are bad, and it is so expensive! How can I seriously live with this disease?” I questioned the necessity of this medication because of all the downside of it, but I found that I would die by ten years earlier if I would not receive the medication. In addition, I was most likely to get complications, such as colon cancer, cardiomegaly, or partial blindness. To prevent these things, I need to get the expensive, painful, and harsh injections.

Complications of acromegaly are many. In my case, some of the complications are pre-diabetes, chronic headache, chronic fatigue, and goiter. As you can see, none of these medical conditions are visible. It’s hard to have just one of these conditions, but if you have all of them, it is even harder. I can still live normally with all these conditions, like my doctors say. However, few people know that being “normal” is more challenging than it seems, so I often feel that I am not understood.

Have you ever felt profoundly tired when you caught bad cold? Chronic fatigue is like you feel that way all the time. Have you ever had a bad hangover headache? My headache comes twice or three times a month usually, and I cannot even stay awake with the pain. Imagine living in such body every single day. For me, living “normally” itself can be hard. Even so, fortunately or unfortunately, I look completely normal, so not many people understand how I really feel. Just to note, however, that not all the people with acromegaly have exactly the same symptoms that I have. Some patients can enjoy intense sports while the other cannot walk easily with a lot of complications.

I have now talked about the challenge to live with acromegaly, but it is not only hardships that I have experienced while I live with multiple chronic illnesses. It is true that I need to deal with a lot of difficulties that I would not have to deal with if I were strong and healthy. Sometimes, I do feel very discouraged, but it does not mean that I feel unhappy. I have gained a lot of important things through my illnesses, and I even feel blessed quite often. First, I became someone who can feel others’ pain. Second, I met a lot of wonderful people through my medical conditions, I was touched by their kindness, and I made precious friends who are very supportive and understanding.

Third, I started being more aware of the limitation of our given time (=life) and how precious it is. In such a limited time, what really matters is how we can make our lives the most meaningful. I had known this in head, but I had not understood by heart until the diagnosis. Now, I started thinking about our happiness all the time. If we cannot feel happy in this limited time, how vain our lives are? When I question myself like this, I became more positive, and made up my mind: “I must become happy no matter what medical conditions I have. I’m the one who’s in charge of making myself happy and cheerful.”

Although I am trying to maintain positive attitude, I sometimes feel depressed. Now and then, I cursed my life, or I thought I would rather die. Each time I was in such a negative mood, however, I thought of all the people who have saved my life and supported me all the way, and I felt warm in my heart. I do not want to give up living so easily, but rather, I want to live as hard as possible with my doctors, family, friends, peers, and their love and support. I think I went to the lowest point, feeling hopeless, and because of that experience, I became much stronger. My smile is the symbol of my strength.

I came this far, but until I made my way up here, there were a lot of hardships, and I am still in this battle. Although I continue facing challenges after challenges, I decided not to lose hopes. I am supported by many people, including my primary physician, Prof. Hizuka at Tokyo Women’s Medical University Hospital / Endocrinology Center. I want to repay all the kindness that they gave me when I needed the most, but it is just too tremendous. I finally came to the conclusion that what I can do to repay is my smile/happiness, and to pass on their good deeds to others. I may not be able to smile like I am now if I did not have to live with chronic medical conditions, so I am convinced that my whole experience with acromegaly is a blessing. I want to give some hopes to as many people as possible through my smile. This is my greatest wish for now, and I do believe it is one of the most important works I can do.

Monday, September 21, 2009

Clinical Trial and Ethnography

I had a meeting with the main research nurse who is running the clinical trial. I'm going to do it (assuming I qualify, I need to have some blood draws performed). Also, I scheduled a meeting with the ethnography people- they're coming over to talk October 6!

If anyone else is interested in doing either (the clinical trial is going on across the country), let me know and I can pass along the info.

Tuesday, September 8, 2009

Letter to congress about healthcare

I wrote the following but the New York Times passed. If you like the message, I encourage my US friends to send it to their legislators (www.senate.gov/general/contact_information/senators_cfm.cfm or http://www.house.gov/). Remember, our president is trying to really steer the future of healthcare in the USA.

Studying healthcare politics from the outside looking in has been absolutely surreal. As a 30-something Acromegaly patient and advocate, I am lucky to have a job with good insurance. Without insurance, I would spend more than $50,000 per year just on my medication alone, so it is fair to say that I have an active interest in the results of this fight. What I can’t decide is which side to root for. It seems like the political thinkers have divided into two camps with a huge chasm in between. The real issue for me is that I don’t think either side is totally trustworthy.

On one side of healthcare you have the national government. Let’s be realistic. Every method of federal healthcare currently available has is flirting with financial disaster. Moreover, federal insurance programs have left physicians floating in a sea of bureaucracy, paperwork, rules, and regulations. Politicians use federal healthcare to buy votes from the old and infirmed, using it as both a carrot and a stick.

On the other side you have private health care. Here you have bureaucracies that are equally overwhelming to the doctors, but the financial reality is far darker than ruin; it is greed. Insurance companies are looking for any reason to not cover medical expenses submitted by the very patients they actively recruit. Patients pay hefty premiums for years, never using their insurance for anything more than the occasional flu shot or random Emergency Room visit. But they keep paying just in case, hoping it will be there if they need it. Sadly, that is when insurance companies find a way to jack up their insurance rates or simply drop the patient from their coverage. And if they are lucky enough to keep their insurance, too many patients find that the company is seemingly more willing to spend money deflecting their claim than paying the bill. Moreover, healthcare companies happily pay disgusting sums of money to law firms-worth of lawyers, executives receiving 8-figure salaries, and lobbyists throwing influence all over Washington, DC. Why? All of this is in hopes of protecting themselves from having to set a precedent by paying an extra dollar for grandma’s aspirin in the nursing home.

So what’s our legislators to do? Force everybody onto national healthcare? Keep the status quo? I think there needs to be a third option? A more real option that will hopefully help everybody. The House and Senate need to create an advisory panel made up of legislators from BOTH sides of the aisle, medical leaders within insurance industries from both the government and private healthcare, medical practitioners, and especially patients familiar with healthcare issues. They need to meet seriously and come up with real strategies and options that provides quality healthcare to the weakest of our society without punishing private industry or the wealthy. This can be done if our leadership is willing to do it.

Wayne Brown
Founder AcromegalyCommunity.com

Friday, September 4, 2009

Muscle Aches and Repetitive Actions?

I've been wondering if these things are linked with Acromegaly. I never used to have muscle aches before and it seems that my muscles are very sensitive to repetitive actions now. I don't read as often as I used to because I think it was causing my muscles in my shoulder and neck to tense up, resulting in headaches. I realized my headaches were always on the left side, and I always read by holding the book with my left hand. I'm a very avid reader so I could read for hours at a time, day after day. Since I've stopped reading as much I notice my muscles don't hurt as much, and I have headaches less often. Maybe I'm grasping at straws again. Just wondering if anyone else can attribute their muscle aches/headaches to repetitive actions, that wouldn't cause problems in someone without Acromegaly.