(no subject)
It always inspires and amazes me when I go in to Children's Hospital. It humbles me. When I see the physical and mental obstacles that others have to deal with from the blossoming of their childhood, it makes my disease look like a parlor trick. Not only the children, but the parents. If ever you have wanted to see what true and unconditional love is, just observe the mother of a sickly child. For example, in one of the waiting areas today, I saw a mother cradling her infant child. The infant obviously had some kind of physical deformity, and was supported by a life support system; a briefcase size machine with tubing running to the infant's nose. I was imagining the difficulty of having a child with such discouraging difficulties, and wondering how I could have peace in a situation like that. How I could go day to day and not curse God for my child's misfortune, for my misfortune. What happened next touched me very deeply. The mother kissed the baby on the forehead, smiled to it, and gently began rocking it back and forth. I realized that it didn't matter that the baby was sick. Of course she cared for the infant a great deal, and the baby's health were of great concern to her, but it didn't really matter to her. She loved her child in that pure and unconditional way that only a parent could.
So, that was that. I discovered that I can stop the chemotherapy, which I am incredibly grateful for. It will take about six months for it to leave my system entirely. I can't wait. Hopefully, the conditioned response of intense and sudden nausea I have to the smell of rubbing alcohol will wear off. My medical odyssey has come to a close for the time being. Eight years of guessing, diagnosing and testing have come to a close. The spreading of the surface scarring has been stopped on my chest and on my back. I have so many crappy memories of this disease. So, in chronological order, here are the particularly unpleasant memories that I can finally put to rest. I can't remember the dates, but I know they all happened in this order...
- Discovering that I can't close my right hand into a complete fist. Also, trying to force my right hand into a fist at home. That hurt really, really bad. This happened roughly in the fourth grade.
-Physical therapy. Wrapping my hand in Ace bandages and dipping it into a big ol' thing of hot wax. Also very painful.
-Sleeping with my hand wrapped up like a mummy. That first breath of morning air when you open your bandage-constrained hand is easily one of the most unpleasant experiences anyone can hope to have. Basically, just stretching scar-tissue for a good eight hours and suddenly releasing the tension and going about your day. Needless to say, it hurt.
-Dermal probing. Imagine taking a sowing needle and putting the fat end into your skin as if it were a syringe. On top of that, tiny electrical shocks to determine if any nerve damage was occurring. Hellish.
-The Juvenile Rheumatoid Arthritis diagnosis. A little relieving, but that feeling quickly vanished upon learning about the knuckle-injections just moments away. I can still remember every moment of that agonizing treatment. I could move my hand a little more, but not all the way into a fist. Easily the most physically painful experience of my life.
-The Linear Scleroderma diagnosis. When symptoms persisted, a closer inspection revealed dark patches and depressions in my skin running up my right arm and onto my chest and back. This led to the biopsy. No painkillers or anesthesia, just a doctor, my back, a knife and the need for a 'piece of me' for the lab. It verified that I had Linear Scleroderma, a disease so rare it usually takes several years of testing to identify and diagnose. What didn't help is when I found out that it primarily occurs in middle-aged women, which is why it took eight years to figure out in my case. Also, I started chemotherapy. No liquor or my liver would shut down.
-Further testing. Not as interesting, but I did have to have a plethora of blood tests, a CAT scan, an MRI and finally whatever the crap it is when they stick you in a glass box and tell you to suck and blow on a plastic tube as hard as you possibly can for a good forty-five minutes.
That's my life-long adventure in having an extremely rare genetic disease. Or auto-immune disease. Doctor's really don't know at this point. This just goes to show how much medical science knows about my condition. If it hadn't have been stopped, it would have spread around my chest and started to wreak havoc on my more important internal organs. If it can weaken bone, cause inflamation, stunt growth, wear-out and destroy skin, and create scar tissue in muscles and tendons, one can imagine what it would do to my heart or lungs.
So, that was that. I discovered that I can stop the chemotherapy, which I am incredibly grateful for. It will take about six months for it to leave my system entirely. I can't wait. Hopefully, the conditioned response of intense and sudden nausea I have to the smell of rubbing alcohol will wear off. My medical odyssey has come to a close for the time being. Eight years of guessing, diagnosing and testing have come to a close. The spreading of the surface scarring has been stopped on my chest and on my back. I have so many crappy memories of this disease. So, in chronological order, here are the particularly unpleasant memories that I can finally put to rest. I can't remember the dates, but I know they all happened in this order...
- Discovering that I can't close my right hand into a complete fist. Also, trying to force my right hand into a fist at home. That hurt really, really bad. This happened roughly in the fourth grade.
-Physical therapy. Wrapping my hand in Ace bandages and dipping it into a big ol' thing of hot wax. Also very painful.
-Sleeping with my hand wrapped up like a mummy. That first breath of morning air when you open your bandage-constrained hand is easily one of the most unpleasant experiences anyone can hope to have. Basically, just stretching scar-tissue for a good eight hours and suddenly releasing the tension and going about your day. Needless to say, it hurt.
-Dermal probing. Imagine taking a sowing needle and putting the fat end into your skin as if it were a syringe. On top of that, tiny electrical shocks to determine if any nerve damage was occurring. Hellish.
-The Juvenile Rheumatoid Arthritis diagnosis. A little relieving, but that feeling quickly vanished upon learning about the knuckle-injections just moments away. I can still remember every moment of that agonizing treatment. I could move my hand a little more, but not all the way into a fist. Easily the most physically painful experience of my life.
-The Linear Scleroderma diagnosis. When symptoms persisted, a closer inspection revealed dark patches and depressions in my skin running up my right arm and onto my chest and back. This led to the biopsy. No painkillers or anesthesia, just a doctor, my back, a knife and the need for a 'piece of me' for the lab. It verified that I had Linear Scleroderma, a disease so rare it usually takes several years of testing to identify and diagnose. What didn't help is when I found out that it primarily occurs in middle-aged women, which is why it took eight years to figure out in my case. Also, I started chemotherapy. No liquor or my liver would shut down.
-Further testing. Not as interesting, but I did have to have a plethora of blood tests, a CAT scan, an MRI and finally whatever the crap it is when they stick you in a glass box and tell you to suck and blow on a plastic tube as hard as you possibly can for a good forty-five minutes.
That's my life-long adventure in having an extremely rare genetic disease. Or auto-immune disease. Doctor's really don't know at this point. This just goes to show how much medical science knows about my condition. If it hadn't have been stopped, it would have spread around my chest and started to wreak havoc on my more important internal organs. If it can weaken bone, cause inflamation, stunt growth, wear-out and destroy skin, and create scar tissue in muscles and tendons, one can imagine what it would do to my heart or lungs.