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Tag: medical PTSD

Being a Professional Patient is Hard Work

When you have any sort of severe life-threatening chronic illness, there is a terrible feeling of being at the mercy of the medical system.  If your doctor is in a bad mood it could be the end of your life. That is not an exaggeration.

I suffer from a disease called Small Fiber Autonomic Polyneuropathy, which is a very rare condition that most doctors have never even heard of, because of that I often get denied the proper treatment even though I know what the right thing to do is. The doctors don’t like to admit they don’t know something so they just plow forward with their ideas and I’m the one that gets hurt or sicker or almost dies (not an exaggeration, I’ve lost count of how many times I’ve almost died due to doctors who don’t know about my illness deciding they know more than me and going … Find Out What Happens Next

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Getting Expelled from Home, A Meltdown, and an ER Visit

After having been at Hillcrest Commons Nursing home for three months and having a meeting about my progress I was feeling devastated. I had just found out that my parents were kicking me out of the house because I too was sick and that unless I found a way to get rid of my GJ feeding tube my port-a-cath, my oxygen (that I used overnight and occasionally during the day), to stop using catheters, and got out of my wheelchair than I would not be allowed home. According to the top specialist in the world on my condition, I was just going to continue getting sicker and I would never be able to eat by mouth again, would continue to lose mobility, would never be able to urinate on my own again, and would need oxygen more and more as my disease progressed. This meant I would never be allowed … Find Out What Happens Next

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