Things I do to help me ...

I use a light machine which helps to retrain my eyes to work together. I have nystagmus which means my eyes don't turn together with explains why I get tired, have difficulty reading, etc.

I use the light machine everyday which is helping to retrain my brain to get my eyes to work together.

I go to tai chi class to work on my breathing to keep me calm.

I try to exercise to keep me active.

I have gone for therapy as needed to cope with my new life.

I use ear plugs if I am in a noisy place,

I use a visor to keep the sun out of my eyes.

I sometimes patch my eye if I really am losing it , feeling to dizzy.

I try different doctors and physical therapists and any out of the box therapy I can find or am recommened too.

I sing.

I listen to books on tape.

I don't even try to do things that I know can know longer work for me and thank G-d that I can do the things I can do and live the life that I live.

I have glasses with prisms in them to help the direction of the light hitting my eyes.

I write in my blog.

I stare at my thumb if I am really dizzy and breathe deeply.

I meditate.

I have started to pray.

I am going to try a shaman.

I thank G-d for the MRI machine which allows me to KNOW what I have. To think that people didn't know what they had years ago grieves me.

I rest every afternoon which sometimes I resent and other times I know this is ok.

Live your life not your weakness

Life your life not your weakness are words that my son James taught me to help guide me through my recovery. I try to remember this when I am feeling down and frustrated or sad. I also have tried to embrace my weakness by using humor, laughing at myself, laughing at it , saying G-d give me more and I will handle that too, having support from others, helping others, praying for others.

One afternoon the carousel started up again

One afternoon I was at home and the carousel started up again. I was doing pretty well, having less and less vertigo and then around 4PM the room started spinnng. I was worried about hitting my head into the coffee table, and losing my ability to cope so I asked my neighbors to come over and sit with me. Janie held my hand to comfort me and to hold me so I couldn't hurt myself. Bill sat by us too worrying about me, thinking to call 911. I told them that was not necessary, just to be there and stay with me until it passed. I knew I was freaking them out so I calmed their worries too.

After awhile it passed and then it takes me awhile to recover from the episode which usually leads to a little depression. Then, it's on with the day.

Went out to dinner with new friends last nigh

Last night my husband and I went out to dinner with some of his old friends from high school. I had never met them before and they asked me about what happened to me. Normally when people ask me about it they only want to listen for 2 minutes and then are ready to change the subject. But, these people actually listened and I felt like they were really feeling my story. It was a nice change. And, just sharing the story with them makes me feel better. It is amazing how that works but it is true.

Hair stylist rodeo ride

In the first year of my brain bleed, and sometimes now, going to the hair stylist was a challenge.

The bright lights, it was too hot to sit under the dryer and the real thrill was the rodeo ride on her chair. Little did she know that sometimes that chair was flipping me back or from side to side, a regular tilt a whirl. Sometimes we would have to stop for a bit until I could catch my breath. But , it is much better now.

Last night didn't feel good at all....

I felt pretty good most of the day, and then around 5PM I felt lousy and throughout the rest of the evening. Little dizzy and nauseous--

I have decided to go back for an MRI since it has been 5 1/2 years since the first one. I wonder if something has changed, another bleed, I doubt it. That darn mind sure likes to wander.

And, I keep going back to how can I live like this the rest of my life? How can I not?

I think for myself personally I am going to stick with the subconscious knowing the real truth, but on a day to day basis just give it my best shot!

Sigh....

Just saw the news about the beauty queen....

I turned on the morning news and heard about an 18 year old beauty queen from Hawaii who had a massive stroke and died. It makes me grateful to be alive . Maybe she could have lived if she had been on blood pressure medicine like I was. Maybe she could have lived if her parents had checked with a doc, but who thinks and 18 year old with a headache is going to die... I was lucky to have survived my brain bleed as a child. So, this leads me to acceptance of my condition, no longer here to fight with it, but to work with it. My job is to help educate others, help others going through it as I help myself.

This week I have been meditating, doing light therapy, taking c are of myself. Feeling more at peace with it. Laughing at it again.

I now live for that beauty queen too. May she rest easily.

That was scary!

It's spring and I just went to hit a bucket of balls for the first time. I have been golfing pretty much since I have had my brain bleed. But today, I had double vision and hit like a beginner. I wanted to cry, but the instructor told me she is teaching a blind kid how to golf and thought , how can I cry.

But why, now?

Nicki

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.