Out of the Blue

On Wednesday, July 31st, I saw my new rheumatologist. The visit went very well. Though the wait to see her was longer, the doctor spent almost an hour with me, took my medical history herself, and asked a lot of questions. She was concerned with the amount of time that had passed since my first blood tests and did not understand my other rheumatologist's reluctance to treat my pain seriously. She declined to prescribe a narcotic, which was fine with me - I have no desire to live in a drug-induced haze. It's bad enough to deal with fatigue-induced brain-fog. The exhaustion makes it very hard to concentrate. She prescribed neurontin, to be taken nightly, and tramadol, to be taken as needed. So far, I've only needed it once. The neurontin has helped my back a lot, and it has the nice side effect of reducing anxiety. Unfortunately, it also has the not so nice side effect of causing nausea and vomiting. However, the vomiting only lasted a couple of days and the nausea seems to...

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...

One summer, when I was about six years old, I was wading barefoot in the spring below the house when I stepped on a shard of glass. It pierced my foot about two inches below my fourth and fifth toes on the right. Because the water was so cold, I didn't notice right away - it felt like I'd stepped on a sharp stone. I kept wading, kept playing, until the ache became persistent. Sitting on the stone steps that led down to the spring, I saw a small cut which had been washed clean by the water. It hurt when I pressed on it, but there was very little blood. I put my shoes back on and went on with my day. I didn't tell anyone. I knew only too well what happened when you told people about things like that. They wanted to probe around in the wound and make sure nothing was left in there. In my short life, I'd already had countless splinters dug out of various appendages, and I was not eager to experience that again. Besides, it was just a little cut. I kept quiet, but the pain...

It has been exactly three weeks now since I've had a call returned from my Rheumatologist or his practice staff. At this point I can't even get test results from these people. These results were promised to be ready on March 7th. I could fully describe my frustration, but I've always believed that profanity is the lowest form of communication, so I'll pass. Suffice it to say I am thoroughly disgusted. So - moving on. I've made a new appointment with a different provider who comes highly recommended. Her practice is about twenty miles away but it will be worth the drive if she will just listen and work with me to devise a treatment plan. In the meantime, I will continue to take Plaquenil and manage my pain as best I can. It is certain that my current doctor isn't interested in helping to treat it. Friday morning, I woke up with the "knuckles" of my big toes on each foot swollen and throbbing. My feet and ankles were puffy and creaky. My knees and ...

I've been struggling with how to write this post for over a week now. I've written and deleted, written and deleted, and finally I decided just to say what's on my mind. I am angry at my rheumatologist. There. I said it. It took months to get in with this doctor and now neither he nor his nurse will return calls. I had another panel of blood-work done two weeks ago and they still haven't answered my request for results, even though they said the results would be available on the seventh of March. I had a steroid shot on March fifth, which was supposed to be repeated every two weeks, but my rheumatologist has decided that since it took a bit longer for the steroid shot to work - seventy-two hours rather than forty eight - my pain must not be related to my medical condition. And that's just stupid, folks. It makes me want to scream and kick something, except I can't stand to kick anything, because my toes and feet hurt too much. The last thing I wanted to ...

I had my third rheumatology visit this week, and this visit was all about pain. In addition to getting a baseline on my joints and mobility, my doctor ordered another full set of bloodwork in order to gauge the effectiveness of the Plaquenil. But all that was sideline stuff to me. I was interested in talking about pain. How do I manage it? How do you treat it? I am not happy with the answer I received. I presented my doctor with a month's worth of journal pages detailing daily pain levels. I told him how many times I'd had to go into work late or leave early due to pain. I described the really difficult days I've been having and asked about options for pain treatment. His answer was to take me off the anti-inflammatory I'd been taking and give me a steroid shot. I asked him what my other options were. He didn't offer any. So I took the steroid shot. The nurse asked me to call her in two days and tell them if my condition had improved. I said I would. I was - and...