Sunday, January 17, 2010

After the Neurologist

i have had the week to sort of soak in what happened at the neurologist's on Monday. Sure the MIT's thing on Thursday messed up part of it, but i have absorbed enough to feel......on hold.

i didn't walk in to the appointment with any expectations but to have an assessment, and a game plan. i walked out with exactly that. i am to have a brain MRI and a spinal MRI, blood work (already done) and an EVP test followed by another appointment with him. i don't know when the MRI's are yet, but am going to be calling them to be put on the cancellation list. The sooner the better. The EVP test is on the 23rd of March (yes i said March), followed by seeing Dr. M again. So, i feel like i am on hold. Dr. M did say it could be an inflammation of the spinal column, but no for sure.

So, i am stuck. i can't drive, i can't feel my left side. my thinking is slow. my fingers don't work right. i have so many cant's, and don'ts i can't see the cans and dos. my Independence is gone. i have to count on others to drive me around for simple things like getting pop or any type of groceries. Appointments have to work around other people's schedules. i just can't get in my van and go for a drive to escape the city. i can't even go camping in my back yard, because i am unable to chop wood.

The worst part of it all, is how tired i get. i get the MIT ready for school, and do some dishes, and i need a sleep. Not a nap. A 4-5 hour sleep. i think the max i have been awake at a time has been Thursday, and that took sleeping for 16 hours of sleep as a recovery time. i don't know if it is the emotional tole to not being able to do what i need or the physical tole of doing what i need that is knocking me for a loop. i just know i am tired. Physically tired all the time.

i want an answer. i want a course of action. i want to know what to expect (oh yeah, and the doctor saying he doesn't think there will be much permanent damage didn't help). i want my damn life back.

Tuesday, January 05, 2010

What is going on

i know i haven't written here in a long time. i have been away from the computer. i have been ignoring it. i haven't had the energy or need to be here. i have had a lot of things going on.

The MIT is doing good, but not. His balance is way off. He had 6 days in a row of lost muscle tone and cluster seizures. He is better now. It all happened after Christmas, but before and during New Years. He is scheduled for a day video EEG on Thursday. Hopefully the EEG will show what kind of seizures He is having, if He is having any that day. At least the last 2 days He has walked off the bus. That is progress.

He is also maturing. He had an issue with a teacher on Monday, and He came home telling me to call His resource teacher. He knew something wasn't right about the situation, and He was correct. His resource teacher is wonderful and helped Him out the next day with active solutions to what He could do next time.

Monday is the anniversary of D's death. i don't know how i actually feel about that. i am going through the same sort of memories i hold about Mike's death. Remembering what happened this day last year. What i wish i could change about last year. The guilt of not going to see her on the 9th last year. i know for E it is more difficult. i know she is trying to not set herself up for feeling anything, and maybe ignoring the whole thing, but i also know how unrealistic that is. i will be there for her. If she needs me, she will call. i will call her this weekend and check in with her. Monday, i may be no use to her. i am going to be a little busy.
Now me. Around the 5th of Dec, part of my leg went numb. Shortly after that, part of my arm went numb. Later i stubbed my toe to the point of bleeding, and i didn't feel it. Now, most of my leg and vulva are numb. At Christmas i lost some hearing . Then i lost some sight. All on my left side. i have bouts of incontinence, and not just the liquid kind. All of this adds up to me getting to see a neurologist on Monday. i haven't looked up all this stuff on the internet. i have pushed it away during the "holidays". Now, it is full in my face. There are other things. Stuff i haven't told anyone until now.

Typing is hard. i can't feel the keys with all my fingers. Spelling is hard. Not just typos. Words i know how to spell, being spelled wrong, and nothing i can do about it, but go back and retype and spell it wrong again. It usually takes me 3-4 times to type the word write. Plus it happens when i am just plain writing on paper. It is hard for me to sometimes make the words look right.

Speaking is frustrating. i can hear myself pronounce words wrong, and using the wrong word. In my brain, it isn't wrong. i only really know it is wrong when i see the look on some one's face, or they ask me what i mean. Even the MIT is correcting me.

i can't drive. i have no peripheral vision on my right side. i am scared to drive. What if something else happens. (case in point, i cut my finger on my right hand and didn't feel it when it happened) i walk into walls when i turn a corner because i didn't see where i was in relationship to the wall.

i am scared. Very very scared. Monday i will have to explain everything that is going on with my body. Monday i will have to face a neurologist about me. Monday i am worried i will be told it is nothing. Monday i am worried i will be told it is something serious. Right now, there is no "in between" for me. i can only see the answers from the doctor being all or nothing.

i am just plain scared.