Being alive

Today I realized that I'll never be able to SCUBA dive again. Its something I love doing and its something I trained for a long time to earn the highest certification for. While this saddens me, I feel better when I remind myself that I DID SCUBA dive. I dove and I loved it. I'm glad I took that chance.


When I was growing up, I had chronic pain. I would stop playing with the other kids, come in from recess to the nurse at school, and be up late crying with my mom because my arms and legs hurt. For years the doctors said it was just growing pains and that I'd grow out of it. They said I was "overly dramatic" and that I "exaggerated" the extent of my pain. It wasn't until I was 11 that things changed. I went to the eye doctor with that I thought was a case of pink eye, that I was taken seriously. The eye problem I had wasn't pink eye, it was acute iritis. To explain it simply, my iris (the colored part of your eye) was swelling, a problem linked to a group of genetic disorders on the gene HLA-B27. From there I went to a specialist for tests to see what caused the iritis and what was causing my pain. At the time, I was misdiagnosed with something called Ankylosing Spondylitis (AS). AS is a disease which causes pain, but causes calcification to form over the swelling (mostly in the spine). I was told that my spine would fuse together and I would likely be in a wheelchair. I was given medications and lifestyle changes to follow in order to prevent permanent damage from happening. Like anyone else in this situation, I was scared. 


At first, my reaction was a strange mix of anger and disbelief, I would take my frustrations out on others and didn't handle it well. Then I realized that I had a blessing in disguise. While I may be confined to a wheelchair in the future, I had the time in the meanwhile to take advantage of. It was this realization that led me to do many of the things I did growing up. I was in 7 choirs, countless plays and performances, and was an active member of many student organizations. When I was a senior in high school, I decided I wanted to learn how to SCUBA dive. At the same time, I realized that I had only been to one overnight camp in my life and wanted that experience as well. I found Odyssey Expeditions. Odyssey was a summer month long SCUBA camp in the Caribbean. I ended up going two years in a row and earning my Master SCUBA Diver Certification from PADI. Years later the diagnosis was corrected to be fibromyalgia, which is good, because there is no permanent damage involved with the pain I feel. 




In the years since that misdiagnosis, have experienced things in that I treasure very dearly. I studied in Sevilla, Spain for a month when I was a freshman in college. I went to Mardi Gras parades more times than I can count. I fished on a dock with my Grampa and caught a big one. I climbed the Great Wall, saw the Taj, visited the Pyramids of Giza, and walked through rush hour in Tokyo. I literally circumnavigated the globe on a ship. I've loved and been loved and had my heart broken. I've slept outside in a tent for a summer and cooked on a campfire. I've eaten foods without knowing what they are and things I never thought I would be able to stomach (and liked it!). I've seen a play on Broadway, a symphony in Spain, and a rock concert at the Magic Kingdom. I've been on 6 week long roadtrips with my family (and yes, we saw the landfill of the Great Dysmal Swamp). I've had a jobs I love for companies I believe in. I've helped raise over $250,000 for charity. I've done all of this because I never want to regret not doing something while I could. Like Mark Twain said, "twenty years from now you will be more disappointed by the things that you didn't do than the ones you do." I've lived by those words. So now, when my health is failing me yet again, I know I have no regrets that I didn't do the things I wanted to do. I did the things I wanted to, I lived, I experienced life to its fullest. So now, if I find that I don't ever get better from POTS, I know that I've still done so many wonderful things. 


I have many years left, I'm not done. Not even close. I fully intend on continuing to travel, while going 8 hours into the rural mountains of Vietnam may be off the table from now on, I can still travel to places that are new. I guess I'm just going to have to find my new adventures. New ways to get that "adrenaline high". But no matter what restrictions life throws at me, I'll never stop trying to find the loopholes and experiencing life. I plan on living, not just being alive. 

So what's wrong with you?

About October 2009 I started to feel sick. It started with pain in my stomach around my belly button which just got worse no matter what I tried. I went to the doctor, had tests done, nothing. I went to a GI doctor, had dozens of more tests done, nothing. But I just kept getting worse. By the time spring came around, the GI doctor put me on a "low residue" diet, which is supposed to make it easier for you to digest food so it wouldn't bother whatever was causing the pain. I was on that diet for a whole summer: ensure, potatoes, anything clear and liquid, pasta, it was a strange mix of foods. Throughout the time I was on that diet I got weaker and weaker. I would have trouble walking, climbing the stairs, and standing for prolonged periods of time. At that time I also took a 3 month medical leave from work.

In August, with school approaching soon, I went back to my doctor. At this point, I was so weak that my Mom had to help me walk to the bathroom, to bathe, and to climb the stairs. I even occasionally had to use a wheelchair in public because I feared I would pass out. I cannot express enough how frustrating it was for me to be that reliant on others. The doctor recommended that I try gatorade because the diet I was on was likely not getting me enough electrolytes. Within a few days of starting gatorade, I was walking on my own again. While that was a huge step in the right direction, I still had the (now severe) abdominal pain. I had also developed some heart palpitations and severe fatigue. All of which I was told were likely no big deal since nothing serious had come of them yet and nothing showed abnormal on the tests.

At this point we had ruled out the possibility that the pain was GI related, so my doctor suggested a new approach. She said that while she now suspected that the symptoms were "psychological" we could try going to a cardiologist to see if the pain in my stomach was related to my aorta (since it was in that location). Since I knew that the pain wasn't "in my head" and was real, I made the soonest appointment with the cardiologist. This appointment with my cardiologist was the turning point. I explained to him the now growing list of symptoms I had: heart palpitations, fainting and near fainting, dizziness, nausea, weakness, chest pains, hot flashes and chills, fatigue, chronic pain (fibromyalgia), excessive thirst, sweating, and my toes turning white when cold (raynauds).  He told me from listening to my story and listening to my heart that he believed there was a physical problem but he wanted to run some more tests (yea, even more). He put me on a heart monitor for what was supposed to be two weeks, but after just a week, he had the data he needed because I was so symptomatic. I met with him again and he explained to me that he thought I have an Inappropriate Sinus Tachycardia and a Dysautonomia. Finally a name for this evil sickness. This explains everything. He started me on a beta blocker and suggested I push fluids and salt, don't have alcohol or caffeine, and take it easy. 

In September, I headed back to work and to school with new hope that it was over, but soon found I was wrong. One November day in class, I collapsed at my desk and was brought to the ER in an ambulance. Once they got me lying down I started to feel better, by the time we got to the ER they were treating me as if I had faked it. They put me in a chair and told me to wait there until someone could see me. I was left there for a few minutes and I passed out again. I'm not sure how long I was out that time, but when I came to, I was in a hospital gown, hooked up to an IV, with heart monitors on. They said my blood pressure went too low and they needed to watch me until it went back up. No one offered a reason why that happened, but they sent me home about 12 hours later with a flyer about low bp and instructions to drink more water. Gee thanks guys.  I had to leave school shortly after this, because I no longer felt it was safe to drive. 

We've since wiggled meds around, adjusted for my low bp, added meds for other symptoms, and more, but I'm still not "better". My average blood pressure at this point was 90/60, way too low to stand for a long time. I continued to work at this point, so I could get health insurance. My mom or sister would drive with me to work and wait until I was done every day I worked. This went on for a few months, but I had to stop going in January because I just couldn't handle the physical requirements anymore. Because I was out for 3 months this summer, I had no more medical leave days and so I had to resign (in early March) until I get better. Clearly what we were trying wasn't working. 

Frustrated because I am doing everything I'm supposed to and still getting worse, we decided to try going to a "super hospital" Jefferson for a second opinion on treatment. There I was told that I have a type of Dysautonomia called POTS Syndrome. We (yet again) changed up the meds, this time going off the beta blocker and adding Florinef and salt tablets. That was this month. So far my blood pressure has gone back up (110/70), my heart rate has gone down (60), but I  have severe weakness, fatigue, and other symptoms that make it hard to do daily things. At this point I'm frustrated but hopeful. I have a confirmed diagnosis. I have a nationally recognized cardiologist who is treating me, and he said that if he doesn't get me "functional" in a few months, he'll send me to Toledo, OH to see the world's best. I'll just take things day by day until then.