HOW ACROMEGALY COMMUNITY HAS HELPED ME

The following is an editorial written by an acromegaly patient.  The opinions, beliefs and viewpoints expressed in this article are those of the writer’s.  Their beliefs and viewpoints are strictly their own, and do not necessarily reflect the viewpoints of Acromegaly Community, Inc, or any of its agents.

Raymond Carawan
Member
AcromegalyCommunity.com

Acromegaly is a very difficult disease to live with, both for the patients and for their loved ones. I was diagnosed with Acromegaly just days before my 21st birthday. I felt its effects long before I was diagnosed, however. Shortly after I was diagnosed, and as time was leading up to my surgery, things just got tougher and tougher as my blood levels climbed higher and the doctors found more and more Acromegaly-associated problems. I felt alone and scared just as I had for many years beforehand; but this time was different. Before I was scared because I had no idea what was happening to me. Now I was scared and alone because I knew what was causing years of problems and heartache. Now I finally had to figure out how to face the specific demon that had been haunting me for such a long time. See, there are many aspects to the effects of Acromegaly, including the physical, mental, and emotional issues. Beyond that, the emotions before diagnosis are just as tiring, but far different than those after diagnosis. The severity of impact from these physical and emotional aspects vary from one acromegaly patient to another but we all face a degree of each of these aspects.

For me acromegaly came in and out of my life for a while. I have never considered myself to be a "normal" individual, having overcome a lot of trauma in my life in the first place. These traumas are part of the reason why it is difficult to pinpoint exactly when I started to feel that something just was not right. That said, since I have been diagnosed and now know what acromegaly is, I can piece some things together.

I was about 12 years old when I first started to feel bad. It was not too terrible but enough for me to notice.  My symptoms included painful knees, dizziness, and fatigue. These symptoms were nothing to really raise an eyebrow at, but for a 12-year old it did offer unusual difficulties.  The doctor explained it away by saying it was just my growing, or that perhaps bones were growing faster than cartilage could. Then, at 16 years old, things got worse. I tore my rotator cuff and labrum (shoulder).  What has even harder was when I started to have what was, at the time, considered to be non-epileptic pseudoseizures caused by post-traumatic stress disorder, mixed with current day stressors. In other words there was no medical reason for me to have these seizures except for the way my brain dealt with stress at the time. It was all for psychological reasons. The scary thing is that several of these psychological seizures almost killed me.

When we finally went to see some specialists, they knew more about what these seizures were from; and told my parents that they were NOT faked however due to the rare nature of these kinds of seizures, many hospitals did not know what they were or how to treat them, so I would just be told to stop faking it.

At the end of one school year, I went home as the shortest, skinniest kid in the whole school, and then the following fall, I came back to school as the tallest and still lightest kid in school. The doctors still said that all of this was normal growing. Keep in mind now that when I was young, doctors said that I had a failure to thrive, and was malnourished.  Then, just a few years later, I turned 17 and seemingly all of a sudden I gained a whopping 80 pounds in less than 3 months, this was attributed to my anti-seizure medication.  When I did complain that I did not feel well, I was told by many healthcare professionals to stop being such a hypochondriac.

Unfortunately, my problems progressed for the worse, both inside and outside the doctor’s office. It felt like no one would listen to me, or they were simply unable or unwilling to hear what I was saying. As living situations became more difficult, I found it hard to even maintain good relationships with friends and family.  Before I knew it, I was unable to live with anyone long-term, due to a lack of understanding and support, and found myself homeless.  That said, I could not even maintain life in the homeless shelters.  I was kicked from homeless shelters because I could not keep up with the chores and they did not understand me. They told me before they kicked me out that they were tired of hearing my complaints and excuses. They said they did not know why I kept seeking help when I was a healthy young male. I was so frustrated because I KNEW something was very wrong with me and yet at the same time, people’s comments made a lasting impression.

Even though, at the bottom of my heart, I knew something was terribly wrong, my friends, family, and especially my doctors had succeeded in planting that seed of doubt. What if they were right?  Maybe there is something wrong with me mentally that is making me think I have all of these problems? I was down and out on my luck. I stopped going to the doctor, I stopped complaining, and simply tried to live as best I could. My suffering only went downhill and I was no longer suffering only physically, but emotionally and mentally too. I began to wonder what kind of person am I?? Do I belong in this world?? Do I matter? Do I make a difference? Is there any hope? Is there anyone out there like me? Sadly, when I answered those questions to myself, my answers were usually NO. During high school, I had to sit through embarrassing parent-teacher conferences and principals office meetings where I had to listen to complaints about my odor, even though I bathed everyday and used deodorant several times a day. I could not help it, and did not know why that was happening. I had few friends because of this.

As I grew older, I started noticing changes to my appearance. I first noticed it when I started noticing the funny looks from people, and those turned into comments about my appearance and scaring little children just by looking at them. I am a gentle giant after all, so this was hard for me. Even after meeting both of my biological parents after years, neither would help me with my living situation, forcing me to move in and out of homeless shelters because they thought I was lazy. By this point it was difficult for me to try to explain how I felt and what my symptoms were, because I knew I would not receive pity.  More likely, in the best case, I would only receive a doubting expression in return. I know how I feel and what hurts and aches, but to try to put something so complex into words for people not living it, well I didn’t fully understand myself, so explaining my issues to others was next to impossible. The only way for them to understand how I felt was if they could actually feel it themselves; which obviously they couldn’t.

The bottom line is that, long before I was even aware of it, acromegaly had destroyed my life. It tore down my self-esteem and self-worth. It made me feel alone before and after diagnosis. It destroyed my relationships with what I once thought was my family. It wore down my mentally. Acromegaly stole my youth right out from under my feet. It destroyed different joints and organs and such in my body. Acromegaly negatively impacted every single solitary aspect of my life before I even knew it was happening. I felt alone, worthless, beaten, betrayed, crazy, sad, old, and like dirt.

Shortly after being diagnosed just days before my 21st birthday, I found out about the Acromegaly Community. I found this non-profit organization through facebook. At first I was a little wary of the site as I had never been one where I would divulge personal information to people that I didn’t know, since in the past, the kinds of reactions I got when I did try were too much to handle.

I began to find that these people were in a very similar situation to me and they could relate to what I was going through. Through the help of Dean Morgan, I was able to get in contact with the creator of the site Wayne Brown. Since talking to Wayne over the phone and on the community I have made countless friends going through the same ordeal. Directly and indirectly, the Acromegaly Community has made a tremendously positive impact on my life.

The members have given me hope, guidance, direction, and information. I have learned what it is like to feel like I matter. I have learned what it is like to feel comforted by the same people that need comforting for the same issues. Most importantly I have learned what it is like to truly be part of a community that shows nothing but pure heart. The heart of this community is the biggest heart I have ever seen in today's society. The way the members support and guide one another is truly amazing. It goes beyond friendship. All of the members love one another and love their Acromegaly Community.

We all have similar stories to tell and we are the ONLY ones that truly understand one another and what we are going through. They helped me understand why I am the way I am, and to be happy with it. When everyone in the outside world has turned their backs or showed that they can't understand and will always see you differently, the Acromegaly Community is just a computer click away. Acromegaly Community has also taught me how to be able to help others and be an inspiration even if I am still going through a rough time myself. Acromegaly Community is the definition of humanity and community at its best. Further, I can honestly say that had I not received a diagnosis of acromegaly and found the Acromegaly Community I don't know where I would be at today, but I do know that my world without the Acromegaly Community is not a world that I would have enjoyed or benefitted from. Thank you Acromegaly Community and its members for helping me survive this terrible world and for making it a little more enjoyable.