Out of the Blue

I had the final visit with my current rheumatologist today. If you haven't been keeping up, let me recap: I started seeing this particular doctor in January. I have been unhappy with his level of involvement from almost the first visit. I decided to change doctors when my current rheumatologist took over a month to give me results of an important blood test despite my having called and left several messages. Then when I saw him again, he wanted to make important decisions about my treatment based on results that were six weeks old from a blood test that had been done only a month into the treatment plan. In March, I made an appointment with a different doctor, but because the waiting lists for specialists in this area is so long, the first appointment I could get was at the end of July. About a month ago, I injured my right knee while walking. I heard a pop and then there was bruising and swelling. It was somewhat better in a few days, but every time I am more active - for active...

In my last post, I talked about alternative treatments for RA. For the last week I have experimented with diet as a way to help control my inflammation. I was feeling pretty good by Friday, and on Saturday, I decided to eat "normally" in order to see if the change was real or only a placebo effect. Yesterday's menu included eggs and grits for breakfast, a sandwich for lunch, and spaghetti bolognese for dinner. I had oatmeal-chocolate chip cookies for dessert. I didn't eat too much of anything, but by this morning I had gained four pounds of fluid and I felt awful. My voice was rough, my sinuses inflamed, and my body ached, especially my left shoulder, both hips, and my right knee. I got up around seven this morning and I felt so bad that I thought about just sitting on the couch under a blanket and abandoning my original plan of heading out for an early morning hike. After some thought, I decided to go ahead and hike. Yes, I felt bad, but I would probably feel jus...

After my recent bad experience with Prednisone ( Touch and Go ), I have been giving a lot of consideration to alternative treatments and therapies for RA. Medications are wonderful when they work as they are meant to, but the lists of side effects with approved RA drugs are long and frightening. Probably the best of these treatments are the biologic medications - they work in two-thirds of patients, and slow or halt the progression of the disease. The problem is their cost. A year's worth of treatment with Enbrel or Humira could cost as much as $40,000. Health insurance may pay a portion of this cost, but because the expense is so great, most insurance companies require that all other treatment options be exhausted before approving biologics. Plaquenil isn't working well for me - I've been taking it since January and haven't experienced much beneficial change. I am reluctant to try Methotrexate because of it's side effects, which include hepatotoxicity, chronic he...

On the sixth of May, my Rhematologist prescribed low-dose Prednisone to help with my progressing RA. I'd been taking Plaquenil since the end of January and hadn't seen much change in my condition. So he suggested stopping the NSAID Relafen and starting with a daily steroid. I did not want to take steroids for several reasons. Weight gain was my primary concern, but it turned out to be groundless; I actually lost weight while taking it. The common side effects for Prednisone are insomnia, infection - I'm already at higher risk for that because of the Plaquenil - excess stomach acid production, excess appetite, and nervousness. However, I also wanted to feel better physically - the pain was difficult to manage, and the fatigue was almost impossible, so I said yes to Prednisone. Initially, I did feel better. I was more physically able to keep up with my days. I had less stiffness, and the tendonitis in my right elbow went away entirely. Overall, I felt closer to normal phy...

Below is a post from my other blog, Today's Wilderness Journey . I wrote it in September of 2012. I happened across it today after spending time with some very dear people. We talked about some deep subjects - pain, emotional distress, and suffering - which sent me backward through my memories and turned up this bit of writing. Because I have been struggling lately with my health, my life, and my love, this spoke powerfully to me. I admit it - I hate change. After my father died, I reverted to my native mode of being, which is co-dependency, clinging, and hoarding. Not hoarding in the usual sense. Hoarding time with people I love. Hoarding life. Hoarding myself, refusing to give of who I am. It has taken losing what I held most dear to make me remember that only in releasing what we love can we actually have it. Khalil Gibran said it eloquently: Love one another, but make not a bond of love: let it rather be a moving sea between the shores of your souls. Fill each other's cup,...

Yesterday was beautiful. Blue sky. Warm sunshine. It was humid but not unbearable. My bones, joints, and muscles felt okay, so I got up and went hiking in the Cherokee National Forest, which is practically just out my front door. My love of the woods is something I got from my dad, and that's why I chose to go hiking yesterday to mark the day of his death. Also, I needed to be somewhere else, doing anything I could to keep from thinking about the loss. When I was around fifteen, my dad and I would go walking in the woods around our farm. He would tell me stories about where the brandy distillery used to be, relatives who used to farm the land, or take me to see old abandoned houses that were hidden in the forest. He knew everyone who had lived around there and could tell tales about all of them. One of the most difficult things about having RA is that it limits the amount of hiking I can do. There's nowhere I feel closer to my dad than when I'm in the woods. Since I...