A Living Coffin

I have been in a care facility for nearly 3 years…

I have a condition called "Psoriatic Arthritis with severe deformities" causing intractable pain. The first symptoms showed when I was 13 years old and the condition became full-blown when I was in a serious car accident in April 1981. There is no cure for the disease and it gets a little worse every day, hence it is sometimes referred to as a "sleeper disease." It was once explained to me by one of countless doctors that it is not unlike mending broken bones with a cast. Every one of my moving joints are fusing together permanently as if they are all broken bones in casts. Most of my moving parts are already fused together including my neck, left arm, legs, cervical spine and vertebrae, rib cage, and other joints that are supposed to move freely.

Currently, because of medical services being withheld by Health Net insurance and the facility I am at, I cannot sit up, stand, or walk. My right leg became contorted and lays against my left leg. The bed I am in is collapsed in the middle causing severe pain against my spine, and has protruding springs which are causing open wounds which is further reason I cannot attempt to move, albeit limited as my motion already is. I have filed three complaints with the California Department of Public Health, specifically about the bed (among other unrelated complaints). The first two times, after visiting, the CDPH concluded that there was nothing they could do about it. The third time, they communicated by letter that my complaint "has merit," but to date, no one has done anything about it.

Many months ago, the facility doctor promised to contact Health Net to have me permanently transferred to U.C.L.A. where I can get a proper bed, x-rays, treatments, physical therapy, etc., which has never happened. As it is, the doctor has only seen me a handful of times since I have been admitted 3 years ago, yesterday (1-29-20) being the most recent—for 40 seconds, and he didn't even open the curtain to look at me! Further, for 2 and a half years, Health Net withheld the medication Humira (over $5,000 a month), which in part is used to prevent my condition from progressing any further. It was only after I distributed a 7-page factual account that they approved the medication—the day immediately after the letter was published.

Before I ended up in this facility, my insurance became grossly problematic, refusing medications and doctors that they were already covering for years, resulting in my condition becoming so severe, I could no longer move enough to go to the doctor for visits and refills. Ultimately, they also refused hospital visits, including *any* exam at numerous ER hospitals which hot-potatoed me around landing me in the facility I am now at (initiated by my '40-second' doctor at the final ER).

I have monthly bills that I can no longer pay, urgent supplies are needed, and a temporary make-shift mattress is necessary for some relief until I can get the bed situation resolved, so any amount donated will be greatly appreciated.

Thank you in advance…


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Sydney Urshan 
Los Angeles, CA
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