Thursday update

Today was an interesting day. I didn't sleep well last night. No particular reason that I could pinpoint. Just restless. Woke up at 4:40 to use the restroom and got something to eat then went back to sleep. When my alarm went off at 6:45, I still felt exhausted. I noticed my face felt more numb than usual and my lips were tingling. Jason said something to me and I suddenly noticed that I couldn't speak. I was completely lucid. I understood everything he was saying and my mind could formulate a clear response, but I could not get my mouth to speak the words. After a few minutes, my words kicked back in, and then a few minutes later, I once again couldn't speak. The next time my speech came back, I quickly told Jason what sign I was using for yes and no, and explained to him that I was completely lucid, just couldn't get my mouth to move. Then my body went into convulsions. Again, I was fully lucid, and it didn't scare me as much as it had in the past because I had experienced these types of convulsions before, but I did decide to take a xanax. Starting the day off with a xanax before I'd even left my bed wasn't exactly how I had hoped to start the day and at first, it didn't pay off immediately. Because not only did I continue to have spasms, but my clear brain went foggy because of the xanax. Within a half hour or so, though, it did kick in fully, my speech returned and I was able to get up and take a shower and get ready for the day.
The kids ended up being over an hour late for school because Jason didn't feel comfortable leaving me until Sonja got to our house at nine. After Sonja got to the house and Jason left for work, Sonja and I went to the storage to sort clothes. I was hoping I would be able to help, but my legs weren't working well and my balance was off, so I stayed in the back of the car while Sonja, Gary, Audry and Ronnie sorted. I had three full body convulsions during those two hours, but one of the nice things about whatever this affliction is is that I get an "aura" before most of the convulsions, so I was able to set my coffee, phone and glasses to the side when I felt it coming on and curl up into a safe position so I wouldn't get hurt.
After storage, we grabbed some Taco Bell for lunch, then headed to my psychiatrist's office to sign a release form so they could fax my records to the neurologist. While there, I discovered that I am not authorized to have a copy of my own records. They can only fax them directly to the doctor. When I asked her why, she said "because it's our policy". Alrighty, then. We then went to get a copy of our house key made so that Sonja now has one in case she needs to get into our house for any reason. Then we went by the school office and I added Sonja as an emergency contact so that she can pick up the kids without us having to authorize it every time. By the time we picked up the kids, both Sonja and I were exhausted, and I wanted nothing more than to lay down and sleep, but I needed to help the kids with their homework, so after resting for about half an hour, I got up, helped the kids with their homework and made dinner. I have been spasm free since about 1:30 today. Woohoo!! While I definitely don't feel "normal", it feels really good to have the use of my arms and legs for several hours straight without interruption.
The kids seem to be doing ok. Gabby was disappointed that I couldn't go to the talent show at the school today. She said it was going to be really hard for her to watch since she really wanted to be in it, but didn't make the cut, and I told her I was really sorry, but then told her I didn't think people would appreciate it if I started convulsing in the middle of the show. I did a little demonstration for her. She thought it was funny and that was the end of that. James, on the other hand, seems a bit more concerned. This morning, he said he didn't want to go to school because he wanted to be right next to me to make sure nothing happened to me. After school, I was relaxing on the floor and he started rubbing my feet and asking me if that made me feel better. Then he got onto the computer and tried to find information on tremors and massage to see if he could find out what pressure points in my feet would make my tremors stop. And he's been asking questions. Tonight he asked what would happen if they couldn't fix my spasms. We've been trying to answer his questions as simply and as honestly as possible, although we don't really have many answers to our own questions at this point.
Jason called the neurologist this morning and explained to them what was going on to see if I could be seen earlier than next Friday. They said they would try to squeeze me in tomorrow and that they would call back to confirm. They never called back and when Jason tried calling them repeatedly toward the end of the day, it rang busy. We will try calling them again first thing in the morning, but I'm not holding my breath. If things continue to deteriorate as quickly as they have this week, however, I plan to head to the ER if the neurologist won't see me. Right now I feel good though (other than some numbness in my face and tingling in my lips) so I'm hoping that perhaps whatever this is will leave me alone for a few days until the doc can see me and I can hopefully get some answers and some relief.