Pain and writing don’t go together

First when my hubby was preparing for death, and I was denying it and fighting for his life, he told me that between Social Security and DFAS I would have enough for rent and utilities. I would have to come up with a way to get food and the other things I needed by writing.

Well, I am still in the process of Social Security. DFAS decided to rule against me. I am sure my hubby is spinning in his urn. They will probably be getting scrooged about now. The only group that came through and it is still not enough for my living expenses is Nevada State. May they have a glorious and restful Christmas.

The pain of losing him as my friend and support system has been overwhelming. You see, I have a lowered immune system because I take chemo to keep my disease, Wegener’s Granulomatosis, under control. It is a sneaky disease because it affects the medium to small blood vessels. In my case it affected the blood vessels to my kidneys causing them to fail. I have been living on Stage IV kidney disease for eleven years now. I have done everything right– stayed away from sick people or even normal people who get sick during flu season, keep washing my hands with purell and antibiotic soap, and taking my pills and vitamins. Still I am not in the hospital or hospice with staff cleaning my butt and driving me around. So why am I not working? I have a lowered immune system which means that even a healthy looking person can make me sick.

So this stressful situation with the loss of my mate has made it hard for me to write much on my novels. Yes, I have three in production, but I am stopping about halfway through. There are times when my brain just won’t do anything. It refuses– emotional pain turns into physical pain. I do have a lot of physical pain as well.

Before I got the memo that working was bad for my health, I tried to work two years after my diagnosis. I worked six months as a loan officer in a small office. My clients were over the phone. It took only that long before I started to show kidney failure– confusion, cramping in my legs and arms, vomiting, and overwhelming fatigue. My late-hubby got a job in Carson City, which saved my life. The rheumatologist put me immediately on cytoxan again because I was failing rapidly. He told me that if I worked that I would cut my life short. My grief tells me that I should have done it. But, my hubby was glad that I stayed home. He worried about me.

I am back in the situation with new doctors and having to justify why I can’t work in an office and talk to people on the phone. Besides the emotional pain, my joints hurt, my head hurts, my throat hurts, my ankle hurts and that is only because I have been around too many new people in the last three months.

It interferes with my writing. Interferes big time. Pain stops the creative process. Pain is now my companion.

6 thoughts on “Pain and writing don’t go together

  1. Cyn, I empathize with what you are facing right now between the medical system, the other agencies who are not doing their jobs and the overarching grief. I think, right now, you need to do what you need to do to maintain a modicum of health. I am sad that you had to switch medical practitioners and that the new ones will not do a detailed analysis of your history. If they did it would be obvious what your limitations are. Here in Canada we have elected representatives that will, on occasion, go to bat with the system for you. I don’t know if that’s the case where you live. If so, it might be worth a try to plead your case to your rep. You need support. Period. And without it your situation will not improve. And if it does not settle down you will, understandably, have difficulty writing. It’s a vicious circle. I know many people in similar situations. Personally I think it’s criminal that governments allow such things to happen.

    • Sadly, many people who are dealing with what I am dealing with are Veterans. I was talking to a friend of my husband who has been dealing with an auto-immune disease and has had trouble working for years. Still can’t get a VA pension or Social Security. And these are people who would rather work if they could and not leeches. A crime imho.

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