More of the Same

Things have been rather slow since I got back from Arkansas. My RA has been at near peak performance for months and I've grown a bit weary of it. A good day here and there is never enough relief. The barrage of storms that continue to roll across S. Indiana are a constant source of pain and the pain keeps me exhausted.

They are once again going to adjust my Cpap machine to try and reduce my apnea events. Obviously, I'm having too many. Is this why I'm tired? Who knows. I'm in constant pain, usually moderately severe. I sleep in pain and I wake in pain. You don't rest like that. So, I don't know if the adjustment will help.

And no, the Humira has not helped. They said six months to see a change. I'm 3 months in. Very little improvement, if any, is noted. In fact, I see signs of things worsening. I'm gaining weight because I can barely walk most days and have less strength in my legs and arms. Jars present Olympic challenges. Any work performed robs me of days of energy.

Reading is difficult because concentration is bad. Writing is difficult for the same reason and my hands hurt. Sitting hurts my back after long periods but walking hurts my hips. I actually feel better mentally when I can get some exercise if joint pain doesn't make it impossible to bear.

This has been a year of hell. I'm not usually a quitter but I've stopped fighting. It isn't going to get better. I don't want to think about what it is going to become.

Death in a Bottle

I elected to not take the Methotrexate this weekend. It was a difficult decision and one for which I have no doubt I will suffer painful consequences. But I was already suffering consequences from the decision to take it. Within one month of starting it the pain in my joints was 100% better. The trade off was that the glands in my neck started to swell and I developed some kind of severe pain in the side of my neck below my ear that rapidly worsened to the point that turning my head in certain positions was agony. I developed numbness along the bottom of my jaw on that side and if I kept my head in that position long enough, the numbness crept up the side of my head and down to my shoulder. I had no explanation for it.

It was obvious to me that something wasn't right. When I returned to the doctor about two months later, I told her the problem and she completely ignored it. Made no reference to the neck pain at all. I mentioned I went to my Primary care physician and she thought it sounded like torticollis. She didn't seem interested and did not check the neck and gave the lymph glands a passing probe. "Yes, they're slightly swollen."

I became more and more depressed, to the point I was spending a lot of evening alone in my house crying. I also mentioned this to her but she didn't feel it was an issue, despite the flyer for the medicine saying this was a side effect of methotrexate, as are the swollen glands.

The swelling worsened. Those under my arms were a bit tender. I was using heat and cold packs on my neck day and night when I was at home. They helped a bit. The neck pain and stiffness got slightly better. It has not gone away. But as of the morning, after not taking the once a week dose yesterday, my glands have dramatically shrunk. I've felt exhausted for a while now, as I think I've mentioned on here. I'd  have to look back but I think ever since I've been on the Methotrexate I've been more tired. Yes, I did hurt less in my joints but my quality of life has not improved.

I've felt for years that my situation was the result of a virus. I watched a video that scared the heebee jeebees out of me a few night ago and kept me up most of the night with what I heard. It was horrible. I will not post the link here. If you want to watch it on YouTube look for Dr. R. E. Tent and a video about autoimmune disorders. I warn you it is insanely scary and sounds like a science fiction movie of epic portions. That was just the first hour.

The second hour, which I skimmed because I was in shock by then, he talked about his patients. He indicated Epstein Barr is connected to rheumatoid arthritis, headaches, and chronic fatigue. Last year, the first five months of the year, I was sick with what my Primary care doctor said was a "recurrence of the Epstein Barr virus". I couldn't believe that then because the symptoms I was having were not familiar to me when I was sick last year. That's mono and I had never in my life had that virus. Apparently, I did. You can have mild cases or just be a carrier.

In light of what I know now, it makes so many thing much clearer. And instead of throwing poison at it there has to be something else. No, I have no idea what. I just know that I believed for years that my condition was the result of a virus. I have no idea why I believed that, I just have always done so. It acts like a virus to me. And no, I'm not a doctor but I read and I pay attention to my body. I listen to it.

So, despite the devastating effects that are probably in store for me with the RA and the pain I am very familiar with,  I see no reason to take a medicine that has, in four months, made me as sick, if nor more so, as I am with RA. In the video, he called Methotrexate "Death in a Bottle".

If you pray, if you know someone who is able to pray for healing please bring my name to their attention. If you take Methotrexate or have in the past, I would like to hear your experiences on it. And if you know of reputable alternative treatments to any of these, I want to know.