A week and a half ago my doctors made 3 major medicine changes. This week, I was coming out of my skin, crying, shaking, not sleeping, in more pain than I'd had in quite some time. So, more medication changes were made, and I hurt much less, and my body is rapidly settling down.
Thank goodness for great doctors. I know that they are learning more about rare diseases than they ever thought that they would. They didn't give up when it took over 2 years to get a diagnosis. One of my specialists, however, is eating humble pie after informing me that it was all in my head. I knew better, and so did the other specialists who kept pushing and ruling out disease after disease until the right tests were performed, and they figured out what was happening.
It's not easy having me for a patient. At this time, they don't have a cure, treatments are being experimented with. Along with the AutoImmune Retinopathy, toss in Cataracts and Arthritis, add some depression from dealing with it, and it tends to make me a pain to treat. Mainly one of the big problems is side effects from the drugs used to treat me. The side effects keep me from functioning well, and sometimes from functioning at all.
At times, I don't feel like a person. I'm a patient, a chart.
We probably won't see my youngest this weekend. He's been in Moore, Oklahoma since the tornado on Monday. Being a member of the National Guard, he left work, got to sleep for a couple of hours and then they called him out. He's had a break, went to sleep, worked a shift at his regular job, and then reported back to duty. He lost his car keys, and his car has been parked at the National Guard Armory in Norman all week. Try to find car keys in a path of damage a mile and a half wide and 17 miles long. Luckily, his roommate is also serving and can take him back and forth.
The tornados have been a nightmare. We live about 10 miles away from the path of the Moore tornado, and about 7 miles from the path of the tornado that came through on Sunday. Being blind, I'd be in the way, so I've stayed home. Not knowing what else to do, I went online to the Red Cross and donated money. Then, I paid my son's phone bill to give him one less thing to deal with while he's on duty.
It's so wonderful to see the way that Oklahoma comes together in the face of disasters. Help comes within minutes, and everyone gets helped. There are very few homeless here, even with thousands of homes destroyed. That's due to family, neighbors and even total strangers opening their homes to those in need. We take care of our own here.
One of my sister-in-laws is an RN in east Tulsa, but in her off time she's been in Carney, one of the towns hard hit in Sunday's tornado.
Enough for now
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