Saturday, September 28, 2013

Mesheli's Story

Hello Everyone,
 I decided I would start by telling all of you what this last year has been like for me, since being diagnosed. I am going to give you as much details as I can. I have huge gaps in my memory. My oldest daughter has helped me with this as much as she could remember. After returning home from the hospital I had a lot of re learning to do. Like feeding myself to walking. By the end of May I was able to do all this. On June 1st I went with my son-in-law to shop for my grandsons first birthday. I had a grandma seizure in the store. I missed my grandsons birthday. My oldest daughter had to move in with me so I could come home. I remember celebrating 4th of July. Its kind of fuzzy. I am told I had another small seizure. I also remember celebrating my youngest daughters birthday, but my birthday is fuzzy. I remember going with my daughter and her little family to sign papers for the new place we were renting. I remember my son -in-law carrying me in. Then on August 8th I had another seizure that landed me in the hospital. From here is when I lost a lot of my memory. I had to have a brain biopsy on a mass they found in my head. What I remember is having a lot of issues with the left side of my body. I was released to a rehab facility and on the 22nd of August I went home. My daughter said I came home talking non sense and unable to feed or bath myself. In fact they had to start putting diapers on me. Under the advice of my nurse with Ryan White, I was taken to the hospital. My daughter was told if she waited any longer I would have died.  That was on September 8th.  On the 21st I had a temporary shunt put in my head due to the excessive amount of spinal fluid on my brain. Then on the 27th they had to put a permanent shunt in. I was told that was due to I make to much spinal fluid and the temporary shunt was outside my body which was leaving me vulnerable to more problems. W hat I remember is my mom was there and her birthday was in a few days. I wanted to go home. I wanted to spend time with my mom before she went back to Missouri. Finally after 2 blood transfusions, I got to go home. I wasn't home a day and back to the hospital because my family didn't know what the swollen looking vein in my neck was. We found out it was just the tube from the shunt and it will swell when its flowing with a lot of fluid. On October 23rd my daughter took me to a different hospital due to finding out that quite a few of my doctors were not licensed. I spent Halloween in the hospital. I had lots of tests done. They were trying to determine if the mass in my head was cancer. I got to go home November 13th. I got to celebrate Thanksgiving with my family. I was back in hospital November25th.This is when they gave me my three months to live or less. I had two treatments of chemotherapy and then I went to hospice house. They sent back to hospital due to infection and my pushy attitude. I remember a few things. I didn't want any more morphine and the coming off was scary stuff.   I also remember throwing a fit about I wasn't going to die I was going to live ! I signed my release papers and was admitted to the hospital. I spent Christmas in the hospital. I got to come home for New Years Eve. I was back at hospital on January 4th.  The night the hospital staff thought I was going to die, one of the nurses came with movies and snacks when she got off work. We stayed up until around 3 am. I woke before breakfast and was hungry.  The nurses were so surprised that one went to get me some food. I stayed at the hospital until Feb. 15th. From there I was transferred to a rehab. One month at rehab and I was throwing a fit to come home. I was only getting 3 days a week of physical therapy and no occupational therapy. I felt they no longer could help me. On March 15th I went home. On March 16th I found the person I was told died in 2007.  I moved back to Missouri on May 6th. May 7th moved in with Paul ( the person I was told was dead ). I am here in Missouri getting my care. I haven't been back in the hospital. My cd4 has been going up and my viral load going down. I have went from wheelchair to walker to cane in 4 months. They also had told me if I live I may never walk again.
Mesheli
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