Stayed home today

I stayed home today, only went out a little bit. I find when I stay home more I feel better. It is all the vestibular stimulation when I go out that makes the day harder. It doesn't mean that I won't continue to work and go places, it just my observation.

Had an appointment with Dr. Timothy Hain

I went to Northwestern Hospital to see Dr. Timothy Hain. He is a specialist in dizzyness/balance issues. He said that I have Internuclear opthalmoplegia. Very rare, it means that my eyes do not work together. It is a disorder of conjugate lateral gaze in which the affected eye shows impairment of adduction. When the partner eye is abducted, it diverges from the affected eye. This produces horizontal diplopia ( double vision). That is, if the right eye is affected the patient will "see double" when looking to the left and the images will be side by side. During extreme abduction, compensatory nystagmus can be seen in the partner eye. Convergence is generally preserved.

I asked him if this can be cured and he said not really. He would try to think of someone who could help me with therapy, maybe California.

For some reason, I basically knew this before. But , I really felt so depressed. Now I am a lifer, someone with a debilitating thing, that was for other people not for me. So, decided to have a few little pity parties for myself over the weekend. It's Monday morning, feeling better again, ready to charge forward once again.

Today I went to the physical therapist

Today I went to the physical therapist --we did some more vision testing and he determined I have nystagmus-my eyes are moving all the time. Also, that my eyes and ears don't work together in sync because my brain bleed happened in the pons or headquarters as I call it.

Tomorrow I am going downtown to Northwestern to see Dr. Timothy Hain, a dizzy doc specialist.

I hope to have a hearing test and take a spin in their rotational chair . Hopefully, they can fine ways to improve the quality of my life.

When I went to the physical therapist today I made him the following list of my issues and here they are:fusion problems, always refocusing my vision, reading week, tire easily, must rest everyday, get fuzzy, ear ringing, computer tough when switching constantly , I just feel like Mr. Mag00...

Thanks for listening...

Flying at the stoplight

In the first years of recovering from my brain bleed, I would have the most bizarre sensations. Sometimes when I came to a stop I would feel my first body come to a stop and then my second body would come to a completer stop. Sometimes, while waiting for the light to change, I would have an out of body experience, like I left my car and went up in the air and returned. I never drove when I felt it would be dangerous, often driving with my patch on so I could see clearly.

I would never want to jeopardize anybody's safety.

So, if you have these strange sensations, do not be surprised and be prepared.

Had a frustrating week

Not sleeping well, my eye fusion problem is scary today. So, I decided to think about what could help me . I have been reading a book call Eat, Love , Pray so I thought what has that book taught be about coping. So, I took my time this morning, did my eye exercises, listened to the book while I did breathing exercises and tried praying. This is something new for me. So, I just meditated by smiling, breathing, thinking good thoughts. Saying to myself , that I want to feel better. So, I am going to go about the day with this infusion of good thoughts and determination once again to carry on.

Watched a House episode called The Black Holeeeee

I watched an episode called The Black Hole and there was one scene that best described whenI had my bran bleed. The patient was having an MRI and all of a sudden she flew out of the machine and was flying down a black hole. She was hanging on for dear life. For all times I have tried to describe it, this was the best portrayal of what it was like for me.

I went to see a performance downtown

Went with some friends to see a comedian in downtown Chicago. This is something that I couldn't even attempt before.

Unfortunately, it was hard to look at the comedian and really enjoy it. The lights, the noise, I didn't quite know where to focus. I tried looking at the back of the chair for awhile, that didn't work, I tried breathing, patching my eye.

Overall, just plain old uncomfortable.

But, I was there.

And, I knew I could get through it and that was good enough for me.