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May 05-11

This Week

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I am still working hard to find the right professionals, I had a little hiccup with my brain. On 21 of February. I was talking to my husband and then said I don't feel well. After that he said my eyes rolled upwards and I wasn't speaking. He walked me to a chair and said he had no idea what was going on. He called 911 and I was taken to the ER for possible stroke.  Eventually, I was put in the ICU for monitoring, I wasn't speaking or eating.  I became coherent, but  unable to speak for a few days.  I have not liked when providers do near exams, it always triggers my eye movement and hurts my head. This was done each day, even when I tried to ask for them not to.  My left side weakness came back and I was using a rollator to move about.  After a few days I was transferred to the regular floor, I was just starting to speak that day. Until, the staff decided to do multiple neurological exams. My brain does not like the lights. I can hear them talking to me but I can only stare at them.  The called a stroke code, as my pupils were not responding, my blood pressure shot up.  After this, they stopped with the pen lights.  I was transferred to acute rehab on Seraphines birthday. (now both of my girls have had me in the hospital for their birthdays due to my injury)  I spent a few days regaining strength, showing that I can safely shower on my own. I was trapped in a bed or a wheelchair. Do not get up as the alarms are loud! Move too much weight to the side of the bed, off the alarm goes.  I was happy to have solid food, the food at the hospital was like wet cat and dog food.   

I was sent back to the ER by my PCM as she did a Neuro exam without a penlight, but my brain hadn't had enough rest to recuperate and sent my eye into a spasm and I wasn't able to speak. 

While at Landstul I had a similar experience minus the no speaking part for longer duration, they ruled it as sensory overload. Once my brain had too much it would just shut down.  I am guessing this is what is still happening. 

They talked about admitting me into the hospital again, but, I wrote down that Id rather go home. I wasn't going to get an answer as to why my brain still is doing this.  I also had a neurology appointment the next morning. 

At this appointment they skipped the neuro exam all together, yay!  and wanted me to comeback for EEG to test for seizures. They felt I was either having a seizure or a non epileptic seizure. I agreed to the testing and would schedule it. I was told I could return to work, but not drive. I am still confused by this one. As they didn't ask where I worked or anything. 

Monday 13 March I go for testing that afternoon, the lady hooked up a lot of wires to my head, one to the heart and cheeks.  This was different than I remembered as I was in the room by myself, but she stayed in with me. She had me do the panting and tapping my fingers, this is exhausting for some reason, then wanted me to sleep.  I rested peacefully, until I head a loud bang, and it startled me. She decided to move on and do the lights, the last thing I remembered was red and white lights my brain was thinking ambulance. I am unsure of how much times passed, but my husband said my eyes opened up and the lights were only a few inches above my head.  He said I just laid there and didn't move or anything. The tech called for someone to come help.  My  husband was upset and wanted them to stop, he said 20 minutes passed before any one came, they didn't do anything. Said I wasn't responding to them at all.  They had no answers according to my husband, said it wasn't neurologically related and couldn't do anything. Eventually, they must have done a sternum rub as my chest is very sore and slightly bruised.  I started to hear voices, but wasn't able to open my eyes when they asked, I tried, so they pulled them open. I was ready to leave, but unable to speak.  I am happy to report my head did not hurt, but I was exhausted. Some how my husband was able to wheel me out of there.  

I waited two days and decided to call the neurology department, to find out what the plan was. They offered to schedule me for 25 of April.  I still have not figured out why getting treatment is so complicated, and I feel like I will walk in and walk out with the same information. NO answer. 

I am working on getting a second opinion, as it is extremely difficult to be overloaded with the everyday noises, sights and some smells.  I have two smaller children that want me to take them places. It is really hard to live life in a quiet environment. 

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