Acromegaly Conference and New Blogger!

Hello Dearest Acro friends!

This past weekend was an amazing experience - it was the Acromegaly Community conference! I have only attended one of these before (in 2011) and this year's conference was every bit as transformational as the first one. There were over 50 acromegaly patients from across the country and globe! Some notable locations I recall: Alaska, Australia, England, and Canada! In addition to the patients, many loved ones and supporters were there, and they even had their own Acromegaly Loved Ones breakout group led by Karen S. (mother of Tanya Angus) and Tina V. (godmother of Tanya Angus). I am definitely bringing my spouse to the next conference!

I cannot emphasize enough the benefit of attending an in-person conference like this! I left the conference feeling invigorated, informed, and even more committed to maintaining my health and advocating for better awareness and treatment of acromegaly.

As I sat in the presentation by Garni Barkhoudarian, MD-Neurosurgery, I remember wondering how my life might have been different had I had access to all the information and knowledge he was sharing before my own surgery. Later during the conference, I had the pleasure of meeting Bella, a newly diagnosed acro patient who is awaiting her scheduled surgery. Well, lucky for Bella, she was not only getting comprehensive information about pituitary surgery before her operation, she is going into surgery knowing that she is not alone and there is a whole family of acromegaly patients supporting her! I'm so happy that I had a chance to sit and talk with Bella during and after the conference. She has an amazing upbeat attitude, and I just learned via the Acromegaly Facebook Group that she is blogging her acromegaly journey! Check it out! She already has several posts up even though she just started it this month!

http://bellasbeanstalk.blogspot.com/

Reading her journey reminds me of my own experience with diagnosis and surgery, now over 10 years ago! I remember how writing on a blog not only helped my loved ones understand what I was going through, but it also helped me sort out my inner thoughts and feelings. Make sure to go over to Bella's blog, read her story, and leave her supportive comments! 

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.

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

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!