Sunday, November 22, 2009

My Mattress Grave

Forgive my bout of seriousness here, I have a ton of things buzzing around my brain right now and am not feeling like my usual asinine self. Fear not, she will be back. I am not a serious person by nature, but so many serious things are going on that I am not up to my usual antics.

I had to put my cat, Flea, down. He was 16 and going down hard. I kept putting it off, hoping nature would take its course and let him go gently into that good night, but it was taking too long and I hated watching him fall apart. I got that lovely ball of evilness when I was 19. 19! And even though he was one of Satan's most devoted minions, I still loved him. I was going to bury him in my older sister's Pet Semetary but wanted him closer to me and didn't want to run the risk of him coming back and setting off a chain of murder and mayhem -- he'd done enough of that in this life. I held him as he was put to sleep. I couldn't let him go without me there. It's very quick, if you have never seen it done, and I hope someday someone will be kind enough to do the same for me if things get that bad for me.

I have decided to go off Tysabri and go back on Copaxone. I have been on Tysabri the equivalent of 3.5 years and am not liking the risks of PML for those of us who have been on it that long. It really bothers me that in 3 years the risks go from 1 in 30,000 to 1 in 800 for developing PML. Where would that put me in another year? Too close for me. I'm not afraid of dying. I'm afraid of living if I was one of the unlucky ones to suffer major disability. I am having the pre going-off-Tysabri jitters and am trying to get everything done around here knowing that I may not be able to do as much for awhile. Most people who go off Tysabri have major "rebound" attacks and I need my house in order before that can happen. I really needed to do something different with my room, organize all my crap or something, so I pulled apart everything and am working on putting it back together a better way. I like my room to be my own personal haven, not a mess of crap all jumbled together -- my collection of Fisher Price Little People does not belong next to my antique book collection.

Lastly, I will leave you with this quotation from Heinrich Heine, widely believed to be one of the best poets, and case of "probable MS" due only to the fact that there was no definitive testing available in his day (1797-1856). He wrote about his mattress grave from having to spend the majority of his day in bed, something I can relate to, having to spend the majority of my day in repose also.

A Free Mind In A Rotten Body

...a sick man is always counting on better days. My mind is free, and clear, and even cheerful. My heart is sound, almost sound enough to be eager and greedy for life, my body is so paralyzed, so rotten. It is though I were buried alive. I see no one and talk to no one.

April 25, 1848

5 comments:

Travelogue for the Universe said...

Best wishes in your endeavors to balance treatment and side effects. Powerful post. Mary Gerdt

Denver Refashionista said...

Best of luck! I like the Copaxone, well as much as a person can (LOL).

Lisa said...

In 2006, Laura Lawes was diagnosed with Multiple Scelrosis and given a life expectancy of one year. Three years later, she was not only living strong, but she gave birth to her first son. It was called "a miracle birth". These miracles are possible today, because of the work organizations, such as yourself, have done. Here, at Disease.com (a website dedicated to disease preventions and treatments) we are inspired by stories such as this, and would like to join you in fighting this cause. If you could, please list us as a resource or host our social book mark button, it would be much appreciated. Lets create more of these miracles; together.If you want more information on that please email me back with the subject line as your URL.

sarah said...

I've been on Copaxone for about three months now. It's not perfect, but I've had great results. I hope the switch goes well for you. Had you been on it before?

And honestly, I'm not trying to be creepy by commenting on what seems like every third post! My last comment for the day, I promise.

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