Out of the Blue

The latest lab results are in, and the news is good. Or bad. It depends on how you look at it. There is one level in particular my doctor has been watching, hoping to see downward movement with this latest increase of Methotrexate. I'm at the highest dose possible, but the C-Reactive Protein  inflammatory marker in my blood still managed a two point increase in the last month from 19 to 21.4. Normal levels are 4 or below. Neutrophils, leukocytes, and the white blood count are still elevated. That means the Methotrexate is not working. This is bad, but it is also good. Methotrexate is the kind of medication that can do more harm than good to those who use it regularly. It was also the last of the DMARDs my doctor wanted to try before moving into the newer classes of biologic medications. Those are extremely expensive, but they also work much better to treat RA, and with fewer side effects. Health insurance will pay for these meds, but only after every other avenue of treatment h...

Well, not really. Not everything. I love my dogs. I love my kids. I love being outside, especially in the woods or by free-moving water. I love learning something new that is also interesting. I love working with my hands - gardening, building, refinishing, crocheting, painting. I love hiking, I love using my body to do incredible things. I love going to the gym. I love mowing my yard. I love spending time with friends. I love movies. Music. Books. Poetry. Writing. What I really hate is my illness. I hate the way my body is attacking itself. I hate getting one joint through a crisis only to have another joint fail. Hands, knees, shoulders, back, hips...one after another, like a cascading systems failure, and I can't stay ahead of it. I hate being in pain all the time. I hate having to ask my daughters for help with simple things like walking my dog or cooking a meal. I hate taking multitudes of medication and not feeling any better. I hate washing my hair because that means losin...

It has been about a month since I started following an anti-inflammatory diet. I am very pleased with the results. Through trial and error, I have discovered that processed, white flour based foods are my primary trigger for inflammation. Pasta, bread, and desserts are the main culprits, though I've found that I can have dark chocolate or a small amount of sugar as long as I don't eat gluten or flour-based products at the same time. I've started putting together a short list of recipes that I hope to lengthen. There are a lot of good gluten-free products out there, and I've been trying some of them out. However, I don't intend to simply replace processed carbohydrates with processed carbohydrates. I'd like to continue to reduce the amount of processed foods that I eat. This weekend, I harvested tomatoes and squash from my raised bed garden. I also had flat-leaf Italian parsley and sweet basil. I diced the tomatoes and added the herbs, half a cup of diced zucch...

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...

One of the lovely gifts of RA is the accompaniment of chronic pain. People with RA suffer from stiffness, swollen joints, and extreme fatigue, too, but the pain is really something special. Sometimes - much of the time for me, thankfully - it is like background noise, that muzak you hear in K-Mart but don't really listen to unless the same song plays over and over, and it's a cover of something by Michael Bolton that you really hate. Most of the time, it's a down-beat version of some easy-listening song from the late seventies that is droning and annoying but possible to ignore. Yesterday, I had one of those screaming Michael Bolton days. Words aren't enough to describe the kind of pain I had yesterday, but I'm going to take a stab at it, because hey, why not? And also because a huge part of being honest about life and about my disease is not sugarcoating anything, especially to myself. It started with a low-grade fever, as it so often does. Around 10 am, my voc...

Yesterday started out clear and cold, but by late afternoon, clotted clouds covered the sky. I didn't have to look out the window to know that, because the waves of exhaustion and low-grade fever started rolling over me at around 11 am. As soon as that first burning sensation in my ears and eyelids hit, I knew that a low-pressure system was moving through. Most of the prevalent information that is available insists that people with rheumatoid arthritis have never been proved to suffer unduly during rainy or cold weather. The prevailing information is wrong. Yesterday's exhaustion was debilitating. I was at work when it hit, and found myself in danger of nodding off in the middle of some critical tasks. I consumed coffee and went for a walk through the building, hoping to wake myself up. It helped a bit, but when I came back to my office and settled in again, sleep washed over me until I felt as though I was drowning. I put aside the bank reconciliations I was doing and inst...