I'm not dead....
4:16 p.m. | 2004-03-05
I�m not dead.
Although, it does feel like postmortem is setting in�
The last week and a half has been hell.
I�m so weak I can�t even sit up on my own.
My arms are bruised, swollen, and sore from my wrists to my elbows from all the IV�s and needles�
I look like a junkie.
Turns out I have a disease which is called Transverse Myelitis. It is a rare neurological disorder that is part of a spectrum of neuroimmunologic diseases of the central nervous system. After reading up on it a bit on the net I learned that even though it�s uncommon, it�s not rare. In some cases, there are not full recovers, in others, in may come and go.
When I woke up two Saturday�s ago, I was unable to feel any part of my body from my chest down. I had lost all mobility in my right leg with the only exception of being able to stand up straight if I were holding on to something sturdy. I learned to walk by dragging my right leg behind me, then reaching down with my arms and adjusting it whenever I needed to sit, move, tie my shoe or climb ever so slowly in and out of the bath tub.
I laid in bed one evening, crying just trying with all my concentration and strength to move the toes on my right foot.
It was hopeless.
After the third day of being like this, I had to stop going to school and work because standing up for two long gave me unbearable back pain. I�d be so out of breath just walking from the parking lot to my critical thinking class that all I could do was sit in the hall until someone came by and opened the door for me.
People stared.
And when I stumbled or fell, no one seemed to notice.
When I finally got an appointment with my general doctor the Tuesday after the symptoms had set in, she didn�t seemed a bit concerned about anything that was happening to me.
�It should go away,� she said. �But lets take some X-rays.�
That�s when we found the broken neck.
Now, although this might sound strange, my broken neck has absolutely nothing to do with my disease. It�s just a bonus.
The doctor said that the breaks aren�t recent. And it was my mistake to not go to the doctor last year after my car accident and get checked out like I should have. I�m sure that�s when the breaks occurred.
The referred me to a neurologist. The same one my sister goes to (she has Multiple Sclerosis), but the bastard wasn�t going to be in until late march.
I was getting worse, so after a few phone calls, another neurologist about an hour away from my house said he would see me as soon as I could get there.
I was at his office from around 4:30pm until 11:45 at night.
He examined me. Poked me. Asked me questions, and then sent me to another building to have a MRI done.
For three hours I laid tied and bound inside a tiny tube not much different from this one.
They took four different MRI scans. One with dye injected in me, and three without.
I�m deathly afraid of needles and blood. They didn�t tell me they were giving me an injection until they had me all tied down in the machine with this plastic vise thing over my head. I screamed and I started to hyperventilate. I felt trapped and suffocated but they wouldn�t let me go.
Three hours.
Tyler never left my side. Lord knows I wouldn�t have made it without him. He sat in the waiting room the whole time chatting with my father and trying his best to not fall asleep after his long day at work.
The next morning I had to be back at the neurologist office for the results. That is when they diagnosed me with Transverse Myelitis.
They said that there really isn�t much of a cure for it, so starting that coming Monday I was to have steroid injections through IV for five days straight in the hospital.
The first and second day was the worst. They had to put me on Valium to calm me. I was having massive anxiety attacks, and just glancing at the bag filled with liquid hanging over me would send me into a state of hysteria. The doctor was having a hard time finding my veins. It took him four times the second day to get the needle in me. I just laid there and cried until the tacky wall paper faded together into a blur. My mother, grandmother, and Tyler sat in the room with me to keep me talking. As soon as they stopped talking to me, I�d start to hyperventilate again. I needed to keep my mind of the needle as much as possible so for five days we talked about anything and everything you could imagine.
Puppies, weddings, school, work, food, family, friends�
Tyler had switched back to the graveyard shift at work. He�d go into work at 11pm, get off at around 7am and be at the hospital with me for the rest of the afternoon, sleep at my house after my daily treatment, the be back to work at 11pm again�
I feel like I owe him so much.
Gradually, the feeling has come back in my body, but not completely. They said it might not come back completely at all.
Today was the last day of the IV treatment.
He wants to see me back in two weeks to do some follow up testing.
On a lighter note, I haven�t shit in five days. Apparently that is also one of the side effects to this disease. If you can�t feel, you can�t crap.
I�m the size of a house, my sides hurt, and I�m so full of shit my eyes are turning brown.
On the other hand I�ve come up with a theory.
If you can�t feel it, you don�t have to shave it.
Besides, the stubble keeps my socks up.
Tyler is still getting used to this idea.
Hehe�
I just feel so ugly.
My mother took me to the spa yesterday to get a manicure and pedicure after my treatment, and tomorrow I�m getting my hair done.
I just need something to make me feel a little better about myself.
My insecurities have gotten the best of me these last few weeks. In the midst of tears today while I was waiting for the bag to drain into me, I apologized to Tyler for looking the way I have been lately.
No makeup.
Hair up combed.
Hairy.
Pale, and weak�
I�m just so scared that one day he would wake up and not think I was pretty anymore and leave me.
I know that sounds absurd, but I�ve been feeling like such a burden on everyone lately.
Especially him.
He�s done nothing but work and be with me at the hospital all week.
I love him so much�
I don�t really have much else to say. Thank you for the notes and guestbook signings a few of you left me.
Hopefully I�ll update soon with something a little less depressing.