Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World
344
Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World
344Paperback
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Product Details
| ISBN-13: | 9781450295925 |
|---|---|
| Publisher: | iUniverse, Incorporated |
| Publication date: | 03/21/2011 |
| Pages: | 344 |
| Product dimensions: | 5.50(w) x 8.50(h) x 0.72(d) |
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ALONE IN MY UNIVERSE
Struggling with an Orphan Disease in an Unsympathetic WorldBy WAYNE BROWN
iUniverse, Inc.
Copyright © 2011 Wayne BrownAll right reserved.
ISBN: 978-1-4502-9592-5
Chapter One
Pre-diagnosis and FrustrationDanielle Roberts
We learn geology the morning after the earthquake. —Ralph Waldo Emerson, The Conduct of Life
I must confess that I am not tremendously familiar with the works of Ralph Waldo Emerson, but as I was looking for an appropriate opening for this chapter, I found the above quote and thought it be quite fitting of my journey with Acromegaly. Before Acromegaly, the word pituitary just sounded silly to me. It reminded me of what a cartoon character might say while spitting something out due to a foul taste. I had no idea what it was, where it was, or what it did, but I can certainly tell you a thing or two about it now. You tend to learn these things very quickly when a doctor in a crisp white coat says he needs to cut into your head to reach your pituitary.
My name is Danielle, and I'm thirty-two years old. I was diagnosed with Acromegaly in 2002. I still remember the day I received my diagnosis as clearly as if it were yesterday, and it's hard for me to believe that I've been aware of my disease for eight years now. Nearly every acromegalic I know travels a lengthy path toward diagnosis, though most of us only recognize it in hindsight. It is my hope to give the best picture possible of what my path was like, and I believe it's important to share a little bit about my background in order to do that.
When you have any kind of difficult medical condition, your support system is your lifeline, and everybody's support system is a little different. No matter what yours is, you definitely need to have one. At this point in my life, I'm a single adult with no children—though I do have a very spoiled Schnauzer. My lifeline through this journey has been my parents, grandparents, siblings, and close friends. Generally speaking, for one reason or another, I haven't spent too much time focusing on other relationships. I move quite a bit because I enjoy experiencing new places, and romantic relationships have come and gone but have never really gotten too serious for me. Occasionally, when I do start thinking about a romantic relationship with someone new, I always have to address certain questions. When should I tell him about the Acromegaly? Or, what if things get really serious and he wants kids down the road? Honestly, they're not really questions I always know how to deal with. For the most part, though, I try to live one day at a time and not to think about things I can't control in the present. I'm just grateful for the wonderful friends and family in my life who have been there for me in more ways than I can count.
Now that I've given a brief synopsis of my support structure, I should probably move on and tell you a little about how I handle more practical daily things. Everybody has to make a living, and I'm certainly no exception to that rule. Throughout my adventures as an adult, I have always supported myself in administrative roles while dabbling in college as I could afford the time and money to take classes. It's not the traditional way to go about things, but I've never been much of a traditionalist, so it works for me. Additionally, thanks to my Acromegaly, I have to make sure that I always have full-time work to ensure I can maintain health coverage. I hope that one day, healthcare in the United States will actually be affordable and accessible without having to depend on employers for it; but for now, I do the best I can working with the system we have.
I'd like to go back a little further now so I can share some of the frustrations I experienced on the long path toward diagnosis. If you've also been recently diagnosed, I'm sure you'll be spending quite a bit of time looking back on memories of certain situations and just knowing that something wasn't quite right in your body. There are so many signs and symptoms that you can look back and see in hindsight—but you never would have caught them "back then."
Acromegaly is a very slow and sneaky disease. It's hard enough to diagnose on its own disease, but if you are already dealing with other medical issues, it is common to blame the Acromegaly symptoms on the existing conditions. I have always had another life-long struggle which only helped to mask my Acromegaly symptoms—my weight. I was a big baby; I was a pudgy child; and I can't remember a time in my adolescence when I wasn't either trying to lose weight, or stuck in an "in between" period of diet programs. When I was in junior high school, I was probably only about twenty or thirty pounds overweight—this in spite of the fact that I was active in community athletics and school activities. Somewhere between my freshman and sophomore years of high school, though, I started gaining quite a bit of weight, and by the time I graduated high school in 1996, I was morbidly obese. There were so many days I remember being endlessly hungry, even if I had just eaten a feast. I just couldn't seem to control the situation, no matter how hard I tried. Don't get me wrong: I understand personal responsibility. What I couldn't understand was why I was experiencing endless hunger that nobody else seemed to experience. It wasn't just a desire to eat; I was physically hungry. There were so many days when I stopped eating just because I knew I had to—not because I was full. It was so frustrating to know that the feeling of fullness was supposed to be there. It was there for everybody else, but for me, it either wouldn't come or I'd be hungry again shortly after. As time passed, this problem got worse, and my weight seemed to snowball very quickly. How do you go from having twenty or thirty pounds of excess weight to being more than one hundred pounds overweight in just a few years even while remaining active? It was all chalked up to behavior and choice, and I blamed myself over and over again for a situation that I just couldn't figure out how to correct or control.
I never realized that other acromegalics experienced the same appetite frustrations until I joined the Acromegaly Community site just over a year ago. It's not listed as a symptom of Acromegaly in anything that I've ever read, and I have never heard a doctor discuss it as being linked with the condition, not even when I have asked. I have learned over time, though, that doctors are still learning a tremendous amount about Acromegaly. They know what they see and can study—but they can't possibly know what we feel that isn't observable to them. Is every acromegalic obese? No, and I understand that I had this issue long before I had Acromegaly, so I know that Acromegaly wasn't the cause—but I do believe that Acromegaly has significantly exacerbated the problem, beginning in my adolescence.
Speaking of my adolescence, I couldn't possibly discuss this part of my life or journey with Acromegaly without sharing that I was a passionate "band nerd" all through school. "One time at band camp" was a phrase that came out of my mouth long before the American Pie movies made it a popular and funny thing to say. I remember wanting to play the clarinet from the time I was six years old and saw a family friend play hers. It was instant love—that glorious black stick with all of those shiny keys making some of the most beautiful and unique sounds I had ever heard. It made some pretty unique sounds when I first started picking it up too, but there wasn't anything glorious about that.
In high school, you don't just play your instrument of choice. You have to wear the twenty-pound polyester band uniform in 100+ degree heat, learn the steps of a show routine on a football field, memorize several pieces of music, march in competitions and parades, and spend hours practicing all of it every day because my school did it to win competitions. I loved it, but it was very time consuming and very exhausting. I always felt like I had to work twice as hard to keep up with the other kids through all of the football games, competitions, and parades. There were some weekends when I slept all day—or both days—as long as we weren't competing. I remember coming home some days after school and just crashing and sleeping through to the next morning. Nobody thought anything of it. I was active. I was a teenager, and teenagers need to sleep a lot. I was also heavier, so my parents just assumed that I wore myself out a bit easier than other kids.
Aside from the sheer exhaustion I felt, there are two things from my "band nerd" days that I remember and, in retrospect, link to Acromegaly. The first is a private music lesson I had where a teacher kept insisting that I needed to make my chin flat and pull it back on the mouthpiece for a better sound instead of letting my chin jut out. No matter how hard I tried during the lesson, I couldn't make my chin flat. It just jutted out beyond what I could control. I didn't remember having that issue in the past, but I remember it being a frustrating issue in that particular lesson. My teacher continuously tried to show me how I needed to form my mouth, and as much as I tried to mimic the exercise, my chin just wouldn't cooperate. When my teacher realized that we were running out of time for the session, he let it go and just told me to be mindful of it and to keep working at it. I did the best I could, but there's only so much control you have over the flexibility of bones. My jaw was growing so much that I was starting to develop an underbite, and I didn't realize it.
The second red flag for Acromegaly that I remember from my "band nerd" days was a pair of shoes. Being a heavier girl, the standard shoes that the other kids ordered from the catalog where all of our band uniforms and accessories came from weren't going to work for me. The shoes didn't come wide enough, and I needed more support for my feet; especially since I was going to be marching so much in the Texas heat. Since the required shoes were a standard white leather, I was able to purchase a pair of shoes more fitting to my needs outside of the catalog. My mom took me to a local shoe company that makes truly wonderful shoes for walking and orthopedics. Admittedly, the store is geared to an older population, but we were able to fit me into a perfect white leather pair of walking shoes, size 81/2 WW, and they were like walking on a cloud! I could have cared less who the shoes were designed for. For marching season, they were designed for me, and I bought a new pair every school year. Though I did stay at that shoe size throughout my high school years, thanks to the Acromegaly symptoms, I was not done growing yet. This led to a slightly embarrassing situation for me down the road, which I'll revisit shortly.
After high school, I moved an hour up the road to Austin, Texas, with a group of friends. I went to college part time, supported myself with office work, and enjoyed the newfound freedom of being away from home and doing some fun and stupid things that young adults do. I also learned way too many recipes involving ramen noodles, which I believe is just a rite of passage for people that age. I spent four years in Austin, and just as in high school, I continued to experience days of sleeping and exhaustion for inexplicable reasons. I would occasionally have to call into work because I was just too fatigued to get up and get moving on a particular day. My body seemed almost bi-polar. Some days, I would feel fantastic and be bursting with energy; other days, I would be so sluggish and exhausted I could barely function. I remember the office manager of the company I worked for suggesting some different vitamins and herbs, and I tried just about everything she recommended. I never had much success with her suggestions, but I tried as hard as I could to control my fatigue. After all, who wants their boss pointing out tips on how not to be so exhausted at work? I was young, and I shouldn't have had to worry about this problem. No matter how hard I tried, though, there were just some days where I couldn't hide how exhausted I was: it was frustrating. I have always prided myself on doing well at work, and I didn't want anyone thinking poorly of me in a professional setting. Once again, I just assumed that my weight was to blame, and figured maybe I needed to be more active and to focus more on weight loss. I joined a gym and worked out daily, and I watched what I ate a bit more carefully. With the help and support of my friends and roommates, I did lose a little bit of weight. Unfortunately, even with these positive changes in my lifestyle, I continued to experience the days of exhaustion.
While I was probably one of the biggest kids in my high school, after spending some time as an adult in Austin, I had met several others who struggled with obesity as I had, and I realized there was a major difference between my life and most other obese people I knew. My friends didn't seem to be nearly as fatigued as I was; not even the people I had met who lived a more sedentary lifestyle. Nobody I knew spent an entire day sleeping unless they were sick or went on some kind of party bender. From what I could tell just by spending time with them, they were able to easily keep up with our other peers who were of normal size. A more pro-active and responsible adult probably would have started asking questions about this; but I just wanted to be normal, and I was afraid to get into in depth conversations about some of the things I was experiencing. Maybe they were just built differently than I was, and if only I could lose more weight, I would be able to have that kind of energy too.
Around this time, I also began having menstrual cycles that were very heavy and irregular compared to what I was used to. I had experienced this in high school as well, but in my Austin years (1996–2000), they began to get much worse. I had health insurance through my office job at the time, so I decided to see an OB/GYN to get the issue checked out. This was the first time I had heard of Polycystic Ovarian Syndrome (PCOS). The doctor diagnosed me with this condition in 1998, and it seemed to explain quite a few things. Finally – an answer! The OB/GYN explained that Polycystic Ovarian Syndrome is mainly caused by insulin resistance and is a precursor to diabetes. For the time being, my body was creating enough insulin to keep my blood sugar in check, but my cells weren't responding enough to the insulin to convert the blood sugar properly, so my body continued to produce more insulin. The symptoms for females with this condition include obesity; acne; irregular, heavy or absent menstrual cycles; excess hair (body or facial); male pattern hair loss; infertility; and fatigue. As with most medical conditions, one needn't have all of the symptoms associated to have a confirmed diagnosis. I had most of these symptoms, and I didn't question that I had the condition. I was just relieved to have an answer after all those years.
The relief of the diagnosis didn't last too long though. While it was nice to finally have an answer as to what was causing so many different issues, it wasn't so nice to learn that the treatments for Polycystic Ovarian Syndrome are diet, exercise, possibly Metformin/ Glucophage (drugs for diabetes that help with insulin resistance), and birth control. Unfortunately for me, I was only good at the exercise - the rest of the list would be an adjustment for me. I always made an effort to stay active, regardless of my size. Diet was, and still is, a never-ending struggle for me, and since birth control pills are linked with weight gain, I didn't really want to go on them and add to my already intense struggle with weight. I tried the Metformin, but experienced side effects of nausea, headache, and indigestion, so I stopped complying with that part of the treatment. Basically, I had the diagnosis and did very little about the treatment. I went on with life as usual and dealt with the symptoms as best I could.
By spring 2000, I had moved from Austin to Nashua, New Hampshire. One of my closest friends had moved there the previous year, and convinced me to move up after the company I was working for in Austin started to suffer huge financial problems. I was 21, the lease on my apartment was coming up anyway, and I was going to be looking for a new place to live and a new job, so why not throw in a little adventure? I had nothing to lose. I spent a few months doing temporary work in New Hampshire and spending my free time having a blast going for drives in the White Mountains, visiting different beaches in New Hampshire and Maine, and exploring Boston. Then, unexpectedly, my friend who convinced me to go to New Hampshire got an opportunity through his job to go to the New York market, and he decided to take it. I had only been in Nashua a few months, and I wasn't going to stay up there alone, but I didn't want to return to Texas either. I decided to join my friend and make the move to New York with him. I stayed and worked in the city for a few months before my friend and I both ended up in Eastern Long Island with new friends that we had recently met. I realize that sane people don't do these things at random—but who's sane at 21? We had no idea what a bad economy was; you could walk out the door and get a new job any time you wanted. We had both done it again and again. We could have cared less about health insurance; it was just a luxury item we didn't need anyway. We had no idea why Hillary Clinton went around causing all that ruckus a few years back or why she suddenly stopped. We just lived and worked and had as much fun as we could ... and I slept when I needed to.
(Continues...)
Excerpted from ALONE IN MY UNIVERSE by WAYNE BROWN Copyright © 2011 by Wayne Brown. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Contents
Foreword Laurence Katznelson, MD....................ixPreface Wayne Brown....................xvii
Pre-diagnosis and Frustration Danielle Roberts....................1
Fear and the Disease: Acrophobia Michael Cookman....................34
Life around Surgery Michael Carroll....................49
Transsphenoidal Surgery, CSF Leak Ayaka Nangumo....................81
Radiotherapy Tyson Koerper....................101
Dealing with the Disease: Friends and Family Haley Zelenka....................120
Dealing with Negativity in Your Life Wayne Brown....................134
Looking through the Window: Acromegaly as Seen by a Friend Ray Graf....................172
Women's Issues Trena Mathis....................190
Talking with Your Children....................218
Managing Disease Symptoms....................228
Coping with Good Days and Bad Days....................261
Three Steps to Empowerment to Move Your Health Control to ForwardFast....................295
Psychological Aspects of Acromegaly Valerie Golden, PhD, LP....................306
Epilogue....................317