It’s now been three years since I started to have spasticity. I didn’t quite understand it in the beginning albeit as time went on and stiffness started to spread, it became clear to me that it is a effect of paralysis. The muscle on the side of my thoracic vertebrae is now permanently stiff, reason why I cannot sit up. I always have a view of the ceiling when I'm at home or the sky when riding in a car. There has been more degeneration that followed. My stomach muscles became more flaccid. I now suffer from autonomic dysfunction. Walking has become even more of a pain than it used to be. What could be the next?
I always dreaded going to the emergency room, that’s why I waited for my right stomach quadrant pain that mimics a gallbladder problem to subside. Since I already had gallbladder surgery three years ago, I was worried it could be my liver, so this time, I was forced to go to the emergency room. Here we go again, carried a pillow and a blanket and wore comfortable clothes ready for the long haul. It wasn’t too bad being called in after an hour and a half wait, they ordered a CT, urine test and last was a chest X ray. Wondering why a chest X ray, the nurse said it’s to rule out pneumonia. All tests came out negative, except for a cyst in my liver which doesn’t usually cause pain according to the physician. But, there’s a possibility as with having Syringomyelia that it could be my diaphragm and they cannot help me at the ER. The doctor recommends a follow up with my primary care.
Am I going to see my GP for it? No, I don’t think so. I don’t even want to go to UCDavis anymore! In my opinion, I haven’t been taken cared of there as I should have been with
other hospitals. I plan to move back to Mercy Hospital where they have more caring doctors and real doctors at that. It mabe frustrating seeing doctors that don’t know a thing about
Syringomyelia, but my only consolation is that I’m able to
consult with my Neurosurgeon at the Chiari Institute online and he always has an answer and knows what I go through in most cases. I’ll wait until the weekend when he has time to e-mail his patients.
I always pray for more patience and energy to deal with this agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I always pray for more patience and energy to deal with this agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I always pray for more patience and energy to deal with this
agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I know it’s not a good way to look at it but there are times when I think that maybe when I’m paralyzed, it maybe easier to know that you can’t move than to force yourself to use a part of your body because you still have a functioning brain e.g. a limb which causes you so much pain in order to function. I have been walking with a spastic gait for so many years. It could get uber frustrating but, I have to remain strong and positive as it’s the right thing to do. Life could be tough. But do I have a choice?
me to do things I wish to do but in order to be happy, I had to contend but in the end, bow your head down and be content because you realize that you can’t win the battle. Yes, I may sound dramatic but this is my life now. It may not be as much fun but I’m thankful of the small things I can do here and there. Thankful for my laptop that I can prop it sideways where it doesn’t need to be held and I can read from it. Thankful for my voice recognition software even though it could be a pain using it sometimes. I’m thankful for the people that are in my life especially my Mom, son, sis Alicia, Dora, my caregiver, all of my friends and last but not least, for Kevin Molloy for being there for me and thankful of his love. I feel blessed because I know that God loves us and He never leaves us alone.
