Wednesday, March 17, 2010
Finally an answer?
We've been hoping and praying for months now to find out what is wrong with my mom. And well...we may have finally found our answer, but it isn't an answer I wanted to hear. Isn't an answer any of us want to hear. In my heart I'm not even sure it is the right answer. My mom...may have advanced full body Reflex Sympathetic Dystrophy. You know that lovely disease that took away my balance, turned my legs purple, and causes me to be in excruciating pain every day of my life? Yeah...that condition. I've had treatments and I've gotten alot better, but my mom would be where I was at when I was diagnosed all those years ago...(wow ten years ago now). Where every little touch hurts, you feel burning, aching, fiery pain all throughout your body. No matter what you do, you can't feel better. There is no cure. It is an incurable disease. Although treatment has come a long way from when I was diagnosed at age nine. When I was diagnosed, there were only two websites on the whole internet, and most doctors didn't even know what it was. Heck, most people still haven't heard of it. It is a very lonely and painful existance. She's going to start on some really powerful pain meds, and she is also going to have the same nerve block I had done three times as a kid. They help, but God is it a painful operation. You try having a catheder in your spine without complaining. It leads to all these other health problems that I have: Fibromyalgia, gastroparesis, and carpal tunnel. The root of all these problems is in an overactive immune system. I guess it could explain how much pain my mom is in, and why her arms have been turning purple. But i don't understand how it could possibly explain the slurred words, or the head feeling heavy, or the blacking out, or the vision loss. I'm just not satisfied. And if this is RSD, and she is resistant to treatment like me, then she will never get better. And our family will never be the same, and my dad will never understand what we both go through on a daily basis. I'm tired of my life falling down around me and having absolutely nothing I can do about it. You think I want my family to fall apart? It sucks. It royally sucks and there is nothing, I repeat NOTHING I can do to stop the process now that it's started. All I can do is do my best to be there for my sisters, which isn't easy when you are in college and every moment of free time is being taken up by schoolwork. Even on this so called break I have so much to do that it really isn't even a break. And since NNU's break doesn't match with the rest of the school's breaks my friends are all still in school, my college friends aren't here, and my sisters are too busy to really spend time with me. Hence I am trapped in a prison feeling alone.
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im going to continue praying for you and your family.
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