Oct 26, 2011

The Missing Puzzle Piece?

When I first fell ill with mysterious symptoms over four years ago, I had never even heard the terms "tachycardia," "POTS" or "Ehlers-Danlos Syndrome." It would have all sounded like a foreign language to me. Soon after my POTS diagnosis I learned that many of my fellow POTS friends also suffered from another mysterious illness called EDS. It sounded awful to me but I wasn't the slightest bit worried that I may have it since no doctor had ever mentioned it to me before. Many of my EDS friends have also been sick their entire lives and mine hit all of a sudden at 22. Prior to that year I had been perfectly healthy all through childhood, adolescence and even those first few blissful years of early adulthood. Never a broken bone, never a hospital visit, never even contracted chickenpox or pinkeye while they were going around my ballet classes.

Looking back on my childhood, I had a few ear infections, a few bouts of strep throat, and pneumonia when I was about 5 (probably the sickest I had ever been as a kid). None of those common childhood illnesses brought me down for long. My mom would take me to the pediatrician who would prescribe antibiotics and I would always bounce back and be as good as new in a week or two. When I was about 5, I also had a large baker's or popliteal cyst on the back of my knee. The doctor wasn't too concerned and said it would disappear on it's own. It must have popped after I was buried in the sand one afternoon. When I emerged from the sand the large cyst was gone and I hardly remembered having it at all until my mom mentioned it the other day. Turns out baker's cysts are actually a sign of EDS. My pediatrician was not the slightest bit concerned about it at the time.

Fast forward to just after my 22nd birthday and I developed an infection around one of four impacted wisdom teeth, and also, another benign cyst on my jawbone. I had intense pain right around my lower left tooth and jaw and swollen gums. The doctor was certain it was an infection that required antibiotics and that I would need to have my wisdom teeth removed when the infection cleared because there was simply no room for all my large teeth inside my small mouth. For some reason, I had a bad feeling about getting my wisdom teeth pulled and had successfully avoided the procedure during my first year of college because I had come down with a cold during winter break and the oral surgeon said to cancel. Sure I was nervous about the surgery, and secretly glad that I didn't have to have it freshman year, but I had no idea that getting my wisdom teeth pulled for real during senior year would change my life forever--and for the worse.

I would be lying if I said I was okay with being sick, that I have come to completely accept it, or that everything happens for a reason. The fact is, I was angry about it. I am still angry about it. In the whole Stages of Grief thing, I have barely moved past the denial phase but now pretty sure I'm stagnating in a perpetual state of alternating between anger and sadness. The only thing that gives me any solace is knowing that I've met so many wonderful people who understand exactly what I'm going through. However, it also pisses me off greatly to know that all of my amazing POTS/EDS friends are suffering, and many are worse off than I am. They are some of the nicest, smartest, most talented people on the face of the earth and they are sick also. I am not sure why God/the universe/[insert god or goddess of your choice here] would allow so much senseless suffering to happen to such wonderful people. Why do the criminals and convicts who have committed heinous and violent crimes often go on to have perfect physical health? It seems like some sort of cosmic joke to me sometimes. What also bothers me is my healthy peers who abuse their bodies on a daily basis. The ones who smoke a pack a day, drink to get drunk and try all sorts of crazy drugs simply for the "high." If they had to walk around feeling drunk every day of their lives without the chance to ever feel sober would they still drink? I feel like a drunk who can never sober up. That's what being chronically lightheaded, dizzy and nauseous feels like to me. Being drunk. And to be quite honest I'm not even sure I have ever even been that drunk. But the closest I have come to being drunk was after three drinks on a full stomach at 21 years old. I felt so crappy the next day that I vowed to never consume more than one drink in the same day ever again. Drinking has never really fascinated me but especially not now. I have never smoked a single cigarette or tried an illegal drug in my life yet I am still sick nonetheless.

Yesterday I was feeling pretty sorry for myself. I had an appointment with an orthopedist who was very knowledgeable and thorough, and for once, a doctor who was also a very nice and genuine person. He examined nearly every joint in my body and tugged on my skin. He referred to my joints as "loosey goosey" and said that I definitely have hypermobility or joint laxity and that that is probably the reason my joints are popping so much. As he examined my knees my hips popped. He felt my shoulders and elbows pop. Needless to say hearing that I 'definitely' have hypermobile joints was not good news to me. I am not a ballerina anymore and although my hypermobility probably served me well in the past, it is certainly not doing me any good now and probably won't in the future either. I realize that there is a distinct possibility that I do have EDS and will have to learn to live and cope with that in addition to POTS. On the bright side, he did say that my hypermobility is not severe, and prescribed me a few sessions of physical therapy to work on joint stabilization exercises.

Ironically, while I was in the orthopedist's office, the geneticist's office called to inform me that they had had a cancellation for Thursday (tomorrow) and wanted to know if I could come in early (my original appointment was not scheduled until April of 2012!) I knew I had no choice but to jump on the appointment, but at the same time it hit me that maybe I am not quite ready to know if I have EDS yet...I haven't really wrapped my head around the whole thing yet and sometimes ignorance is bliss.

Although having EDS would explain my persistent case of TMJ, my dysautonomia and now my noisy joints, I wish I didn't know the reality that EDS is incurable and often debilitating. However I suppose the responsible thing would be to find out once and for all whether I have it or not and either complete my medical puzzle with the missing piece or (hopefully) rule it out altogether. After getting the orthopedist's take on things, I am trying to mentally prepare myself for a positive diagnosis. Getting a positive diagnosis will also undoubtedly make me question whether or not I want to have biological children. Whether or not it would be fair or ethical to knowingly pass my potentially painful genes onto another human life.

If I do have it, or even if I don't, I need to do whatever I can to try to preserve and stabilize these noisy joints of mine so I at least won't have to worry as much about getting injured. At least the orthopedist said my knees are pretty sturdy. My elbows are another story. My ultimate fear about having EDS is that it could mean my dysautonomia may never go away. That no matter how much I exercise, how well I eat or how much I will myself to get better, I may never be cured and may never experience life as I once knew it ever again. So if I can just move through and beyond these darn stages of grief I will have to adopt a new worldview, a new approach to life perhaps. If there is a possibility that any of my conditions will be progressive or degenerative, I had better quit waiting around to get better and start living while I still can.

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