It’s been a while. It’s a New Year.
I disappeared. I had to.
Life has been life the last few months. My mind has been ridiculous. It goes from one thing to another and won’t settle. Sometimes it does settle and doesn’t return for a few weeks. So maybe the previous sentence is an exaggeration.
Last I wrote I talked of some health issues.
They’ve remained the same. The MS has been a bit aggressive. In ways I wish it weren’t. Some days I wonder if I should just turn this blog around into one about the MS because in reality I’ve had this for over 2 decades and I’ve been through so much that maybe I may inspire someone or maybe I may piss someone off. Either one would be fine with me at this point. I can’t hope to be everything to everyone. No one can. That would be impossible. So that is the conundrum, should I or shouldn’t I? I’m leaning toward the latter which leads me to-
I want this to be the initial “Hello” after so many months of not writing. Of not being able to write. I was honestly paralyzed with fear about writing here. So I’m going to break this down a bit.
– 16 had a lot of problems with depression his first semester. It wasn’t pretty. And he basically came close to failing half his classes. But pulled most of them up last minute. Still. He was miserable & it was a horrible experience to deal with. He’s ok now. Second semester he loves his classes & he’s doing “ok”. He’s such a sweet kid & after talks with friends I’m working out ways to get him more socially involved, through methods not really explored before.
– His school come December at our annual IEP meeting had no record of him having Aspergers. His father and I sat there with jaws dropped going “what the fuck?” as they discussed the points of his IEP and what his issues were. He had been diagnosed for a few years. None of the records matched what we came to the school with. Hell, I signed papers for them to contact his doctors about his diagnoses at the beginning of freshman year. Apparently they never contacted his Psychiatrist. This is what she told me. She showed me all of the records of contact from the schools over the last few years, and not one contact came from the High School. I was furious. A year wasted. Interaction wasted. I just can’t even talk about it anymore without wanting to scream at someone at his school. It’s honestly something I can’t speak of without becoming dramatic.
-My anxiety & eye issues are related. This was made clear by my Neurologist in December. Oh, December. There were two weeks full of school meetings and numerous Dr. appointments. One of them was the visit to the Opthamologist. Where they ran numerous fun tests on my eyes to check the state of my sight. And they eventually settled on the following: I’ve lost 95% of my peripheral vision(tell me something I didn’t know), I suffer from bouts of Optic Neuritis(again, tell me something I don’t know), and that the issues I’ve been dealing with since last february off and on MAY be Myasthenia Gravis. If you don’t know what it is google it, even I can’t explain it well.
Ok. So that was all settled. Good to know. I wasn’t losing my mind. However the anxiety about losing my sight has become a bit overwhelming. I don’t think I’ve communicated that to anyone. I know I’m not necessarily going blind, but with all these problems there are times it feels like I am.
Back to the Myasthenia Gravis. I saw my Neurologist a week after seeing the eye doctor. She had me take a blood test right then and there to find out if I had the antibodies for the MG. They came out negative, so she relayed to me that the symptoms I have where when stressed or tired my eye muscles just shut down my eyes which mimic the MG are just really unusual symptoms of the MS. Oh yay. Not surprised, since after all if there’s an extreme reaction to a medication I’ll be that 8 % that has that reaction. So why wouldn’t I have the weird symptoms of MS no one else has? Or at least rarely has.
I’ve had so many flares or something similar to them over the last two years, while I’ve been driving that driving has become something I approach with trepidation. I don’t drive at night, and the idea of going out near twilight hours actually will throw me off. Which is why I’m no longer allowed to.
After the accident in our own driveway in May where I hit J’s car there’s no way I’m allowed to drive when my eyes aren’t doing well. When I’m tired. Or when it’s close to being dark. Even on clear days and his car is parked on his side of the driveway he moves his car when I need to pull out. It’s that bad.
-A few weeks ago during a bad ice/rain storm that came about just after a wicked snowstorm I found myself experiencing my first frightening car accident. I hit a huge black ice patch, my brakes wouldn’t work no matter how hard I pumped them, and I had a choice of either going head on into a busy intersection or pulling hard left into a tree. The tree won. With my 7 yr old in back I pulled the car as hard left as I could and though I was maybe going 5-10 mph I managed to fly up the curb into the tree. We bounced off the tree and my car was stuck there. There was a lot of screaming & crying from both of us. We went back to my friend’s house. Her husband pulled my car out, and my mother & her husband came to retrieve us and take us home.
Since then, the weather has remained a bit undetermined. The cold & snow has left the roads unpredictable. I hit a small ice patch the other day. All was ok but I noticed from the backseat she gripped the arms of her car seat. She’s still scared. Her dad did similar the other night and I saw her do the same. She’s still frightened by what happened. And I honestly don’t blame her.
– I’m dealing with other things that range from the bitch of dealing with disability filing to other family issues that I honestly don’t know how to think straight and write here. I’m going to work on it.
Lately music has really come into play again in my life as it has been such a big part of who I’ve been for the last…well, since I could walk, talk and sing. There were songs that I could credit in getting me to write here again but I’m not going to bring them up.
Another day…Another Time.
For now I have to say…I’m working on it. This thing called life. I’m trying to figure out how to keep going when it all seems as if it’s falling apart.