Out of the Blue

I had my rheumatologist visit today. For those of you who follow my progress with RA, here's my latest news. I am off Methotrexate! WOOHOO! I can't say I'm sorry to see it go. I felt better for the first month or two of MTX, but the benefits faded over time. So it's out with the old and in with the new. In this case, the new is Enbrel. I am registering for Enbrel support this afternoon. I may qualify to receive my first six months for free, and afterward with only a $10 copay per month. That is perfectly reasonable. I am glad, because though I hope it doesn't happen, there is the possibility that my work could change in the near future and my health insurance might change right along with it. But more than the financial aspect, I am glad to be able to move away from the medications that aren't working and into something that just might really change my health for the better. The past month has been hard, but the past two weeks have gone beyond hard to insane...

Let me share with you the shape of a day since I developed this autoimmune disease: I wake up. The room is pitch black, partially because I have purged it of all electronics including my alarm clock with a digital display, partially because I have the blinds closed, and partially because it is four a.m. and the sky hasn't begun to lighten yet. The first thing I'm aware of is the pain in my right shoulder and the inability to close or fully open the fingers of my right hand. Next I feel pain in the small of my back - this has been with me since July fifteenth; I don't think it'll be leaving me any time soon. I try a cautious stretch, and hear the succession of pops and crunches as my joints stir for the first time today. I assess the damage. Will this be one of those days - still infrequent, thank God - when I just can't get out of bed? Will I be able to shake off the stiffness and stretch out the soreness and get to work on time? Or will it be the kind of day wh...

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...

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...

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 ...

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...

I had my first rheumatology appointment today. I started having symptoms in July 2013, and the first blood tests that showed up positive for Rheumatoid Arthritis were performed in August. As soon as those results came back, my doctor started calling specialists to get an appointment for me. There are two practicing groups with Rheumatologists in my area, and one in the next town. The first appointment they could get was more than three months in the future. I tried calling, too, but there were no sooner appointments available. So I waited - and my condition got worse. I went from having mostly good days with some stiffness and pain to having mostly bad days with brief - sometimes only hours-long - periods of normalcy. In the interim between the first blood tests and today's appointment, I saw my general practitioner three times. Each time, she prescribed different anti-inflammatory medications which were supposed to help my symptoms and the pain. They didn't help. One of them...

Hi. My name is Amy, and I am - well, I'm lots of things. And I'm not very fond of labels. Let me just say that I'm 42 years old. I have one failed marriage under my belt, a couple of bad relationships, and one really good one, which is ongoing. I like hiking, reading, writing, and playing the bongos. Until last year, I was in reasonably good health. Then, from out of nowhere, came near-constant pain, stiffness, and exhaustion. Lots of other things were going on at the same time - grief for my father, who was recently deceased, severe work-related stress, and kidney stones. But after the work-stress eased a little and the grief mellowed just a bit, after the kidney stones had passed, I still didn't feel good. My back was agony, my hips screamed, and my knees crunched with each step. My hands, wrists, elbows, and shoulders ached constantly. And I was tired - oh so tired - I could fall asleep within minutes, no matter where I was or what I was doing. It went on this way f...