Thursday, September 30, 2010

CFS is a Terrible Thing; My Stay at the Hospital

September 23 at 8:54pm

I've just been admitted into El Camino Hospital. CFS is a terrible thing.


September 24 at 4:00pm

physical therapy came in today to check my mobility. she wanted me to stand and i kept telling her i couldn't. she said i needed to try anyway. i got half way up and blacked out - crumpled to the floor. ridiculous.


September 24 at 6:09pm

Hospital update: they are unable to find a solution to my unmanageable pain so the next idea is to discharge me. Wha?!?!


September 24 at 10:56pm

Tonight my home nurse came to the hospital and gave me a bed bath and a massage. There are angels on this earth; of that I am certain. Good night everyone. Thank you for all your support.

 September 26, 2010 at 6:38pm 

They have put in a new system of gatekeepers called "hospitalists." These are the 'doctors'  that decide if you are sick enough to be there. Yesterday afternoon, I had been given an incredibly painful shot (for pain ironically), screamed out in a piercing cry that I've never heard come out of me before, broke out into convulsions and then fainted. Moments later, my hospitalist  said to my family and friends that my vitals were fine, and I was medically sound (over my quivering body). She also said that she knew a lot more about my health than they did (she had spent about 7 minutes talking to me total, all of which was explaining that I was not sick enough to be in the hospital). This is the state of medicine now. They pulled out my IV, tossed my limp body in to a wheelchair, and sent me to the psych unit.

 September 26, 2010 at 8:14pm

I fainted this morning in the psychiatric unit. The nurses panicked as they are not trained for that sort of thing on their floor. I was on a bedside commode (toilet) and hung over like a rag doll for quite a long time as no one knew how to move me. The nurses were telling me just what I had told the doc on the med floor. They were not trained nor equipped for such situations. They actually asked a friend of mine to put on a pair of gloves and help to pick me up (Can anyone say malpractice?) I was discharged from the hospital hours later.

And so, my back is wrecked as is the rest of my body. I am significantly sicker than when I went in along with the bitterness of such mistreatment from my last stop for help in dealing with my health problems. I'm at the end of the line for pain control, even my own doctor agrees with this. There is nothing else out there that I haven't tried. CFS treatments are still in prehistoric times and I am far too weak and beat down right now to endure any kind of experimental treatment.

So what can I do? Throw it in and kill myself? No, I've decided. Perhaps, this string of recent events is my opportunity to tell this horrifying story of medical neglect to a greater audience. That's where you guys come in. Lawyers, journalists, activists, connections to people who know people that will be heard, please let me know what your thoughts are on this.

If my entire adult life is to be spent like this, there is no way I'm going to let that be in vain or wasted. There is a story to be told here and change to take place. It's not my story but one of millions of people with CFS who are petrified of doctors and hospitals as they have been through all this as well.

I spoke to a CFS patient the other day. She has not left her home in nearly 30 years due to CFS. That's not ok with me and really, it shouldn't be ok with anyone.

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