Introductions

first published early 2010

I have a chronic syndrome called Reflex Sympathetic Dystrophy, although at one of its more recent conferences to discuss this disease its name was changed to Complex Regional Pain Syndrome. My "version" of this disease started with a bump to my right wrist and spread to my hand and up to my elbow. Of course, my right arm is the dominant arm, which means the symptoms of this very strange syndrome - primarily pain and also excessive sweating, skin spotting, changes in nail/skin tone, muscle atrophy, loss of fine motor skills, and a propensity to spread all over the body on from the original site - affect a fairly important part of my body. This disease has been researched as early as the Civil War, but very little concrete information can be verified. The name RSD rests on the presumption that the syndrome caused by a basic malfunction of the sympathetic nervous system. However, research has shown that some people with this syndrome experience all of the identifying symptoms with none of the sympathetic nervous system issues. So, in the medical community, we vacillate back and forth between RSD(S) and CRPS... that is, those of the medical community which are aware of RSD/CRPS and do not consider it to be psychosomatic or hypochondria.

There are many things I hope this blog will be and several things I hope it will not. It will explain what it is like for a currently 23 year old young girl (who is semi attractive and only somewhat crazy) to be single with a chronic pain disease. It will discuss my journey from the world of unemployment to the world of employment (I hope). I will explore my "feelings" and the "feelings" of those around me who have been affected by RSD. I will also discuss parts of my life that I do not consider connected to my RSD, despite the fact that it is likely my life is irrevocably changed to a point where everything I experience is connected to RSD. I have not, however, started this blog for a safe place in which to express ways in which my life's experiences are not fair. I will not compare my life to other peoples' lives in search of some sort of judgment. I may compare my experiences to others, but simply in the name of personal expression and research. I will not feel sorry for myself.

In order for you to understand what my experience of RSD is like, I will briefly explain what my pain and other symptoms are like. In order to keep the crazies away, I will not be giving details about my medication regimen, though I can assure you it is somewhat extensive (but could absolutely be worse). Extend your right arm and pretend it is mine, palm down. That bump on the outside of your arm is the part of my wrist I broke over 7 years ago and which healed. In mid-October of 2009, I knocked that bump into a table. I was in my second-to-last semester of graduate school in a competitive program. Over the next two months, I began an aggressive medication regimen. The pain, muscle atrophy, and loss of motor skills continued to compound and spread - first to my fingers, primarily my pinky and my ring finger, and then on down to my thumb, and next up to my elbow. In December of 2009 I scheduled a series of six nerve blocks, which were extremely uncomfortable and gave me a nice bruise. They also stopped the RSD from spreading. So, look back at your hand and pretend it is mine. My fingers are swollen and hurt constantly. Spots on them burn; other areas feel as though a letter opener is being pushed and pulled at random intervals throughout my fingers and knuckles. Breezes and breaths (yes, exhales) hurt my skin. I must avoid getting my arm cold because it cannot warm itself; neither can it cool itself down without assistance (heating pads, pools, gloves, etc.). Now pick up something small, like a tube of mascara. If you were me, you would very likely drop it without ever realizing you didn't have a good grasp of it. This morning while putting in my contacts, I knocked over my contact container and spilled all of the neutralized cleaner out without realizing my hand was even near the case. I have been told by my Occupational Therapist this is because another symptom of the syndrome is that the sensors in my hand, wrist, and arm that send signals to my brain about my arm's place in space no longer operate accurately.

So here it is: my introduction of my disease to you. I'll go into further depth in the coming posts. However, I haven't told you very much about myself that is unrelated to my disease. Let me try now. I like to read, especially before falling asleep, but it is difficult to hold my book and use my hand muscles in this manner for longer than 10 minutes. I recently purchased the Office seasons 1-5 and am enjoying my foray into this world of humor. I like to kick it with friends but I get tired quickly and crabbily easily without seeing either "swing" coming, usually due to pain. My friends and I enjoy going out, but when I get bumped at bars it sends my arm/wrist/hand into a tailspin. I have a cat. He is orange and very social and playful. I live at home because I recently graduated with my master's degree and am over-educated and under(work)qualified for my field. I am applying for jobs with vigor (despite the fact that I have to carefully read the descriptions to watch out for "requirements" such as being able to carry 50 lbs. [ha! as if]). I love summer, though the humidity in my home state makes my hand and knuckles swell up like crazy. Winter lasts way too long up here, but I love dressing in cozy clothes such as sweatpants/sweatshirts and hiding under blankets. I like to write, although technically I "type" and am very proud that through extreme motivation and dedication to Occupational Therapy, which I have attended rather religiously for the past eight months, I can now type using my hands rather than voice recognition software (really great technology... but also really annoying). I can physically write but it causes pain every time.

I've now introduced myself and my disease. For tonight, I'm signing off. My cat is ready to play, and I'm having a fairly good pain day, so I'm going to see where that takes us.