Still Looking for Answers: July 2003
Currently, this is my basic list of symptoms (at least all of the major ones):
General body pains
Hypersensitivity to touch
Feeling hot and having the chills/goosebumps
Feeling cold and sweating
Can't sit up for very long
Can't hold my head up more than 10 minutes without excruciating pain.
Tingling in head
Tightness and pain in neck and shoulders
Tightness in chest and shortness of breath
I'm sure there's plenty more. That's all I can think of right now. But due to all of these symptoms, I never want to get out of bed. I'm managing to take one summer school class, but I usually can't stay for the whole class. I also have a lot of difficulty sitting up in class and holding my head up. I will sometimes wake up in the middle of the night with excruciating head pain.
Right now, we have a follow-up scheduled with Dr. Grubb's assistant for the second week in August. I have faith in him, but I'm not sure how much he can actually help.
We also have an appointment in NewYork, at the Chiari Institute, at the beginning of September. The doctors there are the best of the best. They specialize exclusively in chiari and related complications. When other doctors see nothing wrong, even really good doctors, these guys can figure out what's actually going on and make you better. I am praying every day that they will be able to help me. If anyone can help me, it would be them.
This is what I wrote in a recent journal entry:
I'll just add that I'm still so worried about New York, cause they pretty much are my last hope. I just need them to be able to help me. They have to figure out what's wrong with me, instead of trying to convince me that everything is fine. Sometimes, it starts to work. I'll actually listen and believe that I really am delusional or a hypochondriac or something. Why do I let them get to me? Why do I let them discredit me so much? I am the only one who knows how I feel. And very few people, mostly just my mom, know what I go through every single day. But someone has to listen to me, and someone has to be able to help me, right? I need help. I need someone to figure out what's wrong. I don't care what any of the doctors say really. I know that something is extremely wrong inside my head. And I can't accept the fact that these are just permanent neurological symptoms from having chiari for too long. I know I went a long time without getting that fixed. But that's cause no one took me seriously for so many years. They assume that a child who has a headache every day and who is nauseous all the time is just complaining, and just doesn't want to go to school. So they let me go years with this condition undetected. But I refuse to believe that I was really meant to live my life with this permanent neurological damage. Because if that's the case, why would I even bother...it's too painful. No one should have to suffer like this for their entire life. So for now, I'm gonna keep believing that the doctors are smart enough to fix whatever is wrong, and that I will one day get better...I know I'll never get completely better, but at least to the point that I could have a normal life back.