Sometimes you are minding your own business, very closely, and someone comes up and touches you on the shoulder. You jump a little because you hadn’t even realized someone was there; You were so intent on your own thoughts that you had blocked out the world around you. That just happened to me. Someone started following this blog and it startled me. I hadn’t even realized it was still up and running. I deleted the whole blog on blogger. If you type in the name for it it goes to some Indonesian thing for car parts or something. So, surprise!
Long story, short: The last year has been a roller coaster. Not the good fun kind. The icky ‘oh my goodness, why are we on this thing?’ kind. Hubby got really sick last December. I diagnosed him with rhabdomylosis and blamed it on the Lipitor he had been on. I took him to the doctor and they took blood work and said they thought he had cirrhosis. They did an ultrasound three months later and said it could be cirrhosis, it could be fatty liver. They did not seem to be alarmed by his weight loss and muscle wasting. “Why,” I demanded, “Does he have asymptomatic cirrhosis, mildly elevated liver enzymes, but he has stage four muscle wasting?” They did not have an answer. They wanted to run more tests. They scheduled those tests for three months further on.
Let’s just say that we didn’t wait. Let’s just say that we got up on a Monday morning and went up to the UVA Hospital in Charlottesville, Virginia and planted ourselves in the ER. We were not leaving without an answer. We didn’t have insurance and we didn’t care. We’ve been turned down by Medicaid three times for ridiculous reasons, turned down for an exemption from Obamacare so we could get catastrophic coverage even though we qualified three different ways for an exemption, and we just didn’t care anymore. Were we really supposed to just sit in our house and wait until he died? Because he was going to die before his Medicare kicked in November 1.
Within two hours of entering the ER they told us it was not his liver. Within four hours they told him they were admitting him and just waiting for a room. By the end of the day they were pretty sure that he had a devastating autoimmune muscle disease. They thought that anyone looking at him should have seen that he was in serious distress. Huh, so did I.
We go back up to UVA twice this week, seeing two specialists: Neurology and Rheumatology for the final diagnosis, but the preliminary is Polymyositis. It is not a disease you wish on someone. My husband is only 62 but he has the muscles of a 90 year old man. He can’t stand up without assistance (from a regular chair). He can’t get in or out of the shower without hand grips. He can’t walk up and down stairs without someone behind him sort of boosting him. We’ve modified our house in every way possible except a wheelchair ramp. Please, God, please don’t make us have to have a wheelchair ramp.
They put him on the standard treatment of high dose prednisone. With a high dose acid blocker. And something to help him sleep (which is not working, by the by.) I added in some Vitamin E and a Calcium + Vitamin D gummy. And I read everything on the interwebs about Polymyositis. I read about all the treatments available. I read about things people have tried that didn’t have statistically significant results. I read about the homeopathic, herbal, massage,alternative therapies ad naseum.
I’m not the kind of person that you tell “This is what you have and there is only one thing you can do for it and this is it.” I’m the kind of person that when they told me my son was mentally retarded with language disorders I said, “Okay, so what do we do about it?” and they said, “You can’t do anything about it! He’s retarded! He’s got an IQ of 50 and he can’t talk and he doesn’t understand what you say!” So I went out and I found stuff I could do and we did it and my son can read and write and talk your ear off. He talks to himself through out the day because it is not just enough to talk to other people. He asks himself questions and then answers them to himself. It’s a little weird, but you get used to it. Anyway, the point is that I don’t sit back and do nothing.
Sorry. Did I say this was a long story short? Apologize. It’s a long story long.
I swear this is absolutely the longer story short! I found out a high incidence of the people who have polymyositis also have celiac disease. The Mayo Clinic doesn’t think that a gluten-free diet made a significant difference but it was a small study. I was looking up some of the signs of gluten sensitivity and they are quite broad, really. But there were some interesting unique signs that my daughter displays. She is working on a gluten free diet because her husband had MS and she says when she cheats she gets really sick. So my working theory is that there is a family history of gluten sensitivity. There really is a family history of autoimmune disorders, both sides, and the advice is to try gluten-free to see if it makes a difference.
I don’t have a pithy summation. I’m sleep deprived and fresh out of pithy.
Come on, try!
Okay, Words to Live By: Never Give Up! Never Surrender!