Care and feeding of your new cripple
i hope this isn't too long and wordy, but here goes!
i had been a legal wordprocessor in san francisco since 1987. about 1997 i started to feel tingling in my right hand. fearing it was carpal tunnel, i saw a specialist who did all the electronic nerve tests and i passed with flying colors. then my feet started to go numb. i worked evenings sitting at a computer and all day at my computer at home. i also lived in san francisco without a car so i walked everywhere. i also had 2 dogs which we spent 2 hours in the dog park every day for 2 hours and two more walks each day. i thought my feet were going numb because i sat at my computers too much and it was my own fault; i was too embarrassed to go to the doctor.
in 2007 i was at the point where i could not get my legs to work properly; i could not seem to remember how to run or even how to walk. i started to fall and lose control control of my bowels and bladder. so i went to the doc and had an MRI. they stopped counting after they found 19 lesions on my brain and spine. i was dx'ed with MS primary progressive and sent home with a folder from the MS society. i had walked into that meeting with the neurologist and i walked out of it. i was told NOTHING about my disorder. no one told me i could apply for medicaid or i could get a social worker. i had been on disability since 2004 for bipolar disorder and i was not informed then that i could apply for medicaid.
i went home and started my long downhill spiral. i kept moving as much as i could; i had parrots and a dog to walk. i lived in a flat that was two stories and the stairs were spiral; i ended up having to go up and down them on my butt. i got extremely sick in april or may of 2008. my fever was high enough that i had to crawl to the bathroom using my arms; the bathroom was literally 3 feet away and it took me two hours to crawl in there, pee all over myself, get off my wet clothes and crawl back to bed. no one really believed that i was as sick as i was; neither did i. my friends were too busy to come and help me with food or walking the dog, etc. i managed to get one of those horrible tv scootable chairs which was totally inappropriate for san francisco. the battery would run out of charge on the way home; thank god for nice people who saw me and would haul out an extension cord to let me recharge.
i finally got to where i could walk again, but it was harder and harder for me to get food and to get up and down those spiral stairs to the kitchen; food started to taste weird, too.
finally my best friend called my little sister to come rescue me, as she was afraid i was starving to death. in 1 year i went from 170 to 125.
i grew up in boulder, colorado. i moved to san francisco when i was 21 and returned one month before my 44th bday. when i asked if i could come home to my parents (they live in boulder with a 3 bedroom, ranch house) they said no. my sister and her very catholic husband said come to greeley (i am a lesbian who is very out; he said i was family and that's all there was too it. i do not know if i would have done the same).
so me, my two parrots, and my dog moved from the san francisco bay area to greeley colorado, a red-neck, conservative town of 100,000. greeley is the big city for about 5 small towns around it. i went from a city that was 7 miles x 7 miles and 700,00 people, to a town that seems to be famous for its smell. greeley is one of the main cattle stockyards and slaughterhouses in northern colorado. when i was growing up in boulder, all we knew about greeley was that it was that when snow was coming from the north, we could smell the cows. and now, after 21 years in the gay ghetto, meeting people of all nationalities and professions, i found myself in a town that is the same as it was, except it has doubled in size.
one of the joys of MS has been the loss of so many things. one is my inability to type. as a wordprocessor i could type 106 wpm. i could type as fast as i could think. now i am down to typing with one finger. it takes so long. i am training dragonspeak but i just started, so i have to use 1 finger. i am exhausted; it has taken me over two hours to type this.
i am going to post this and, hopefully, i can add part II tomorrow!
thanks for reading and part two is most of the horrible experiences i have gone through and am still experiencing. thank goodness for my bipolar meds because if my mood crashes, well, we all know about robin williams.
TO BE CONTINUED!
Does listening to music help lower the severity of your stress or MS symptoms?