Until recently, I wasn’t much of a napper. There was always too much life to live and too much to do. I didn’t want to waste any time sleeping during the day, even when my rheumatoid disease gave me a lot of pain.
I lived for my first 14 years with RD blaming my near constant, bone-deep fatigue on being in pain, on being busy, and on poor sleep. Fourteen years of feeling guilty if I took a nap. Imagine my surprise when I learned, after having RD for roughly 20 years, that one of its major symptoms is fatigue. That it hits no matter how well you’ve slept, and regardless of your pain level…
Hi, all. I’m a bit late in posting this (I’m blaming RD brain fog because it’s the only excuse I have) but figure better late than sorry. No early bird jokes, please. 😉
If you’re the Twittering type, check out this Joint Decisions/Creaky Joints Twitter Chat tomorrow. RA Guy and the folks from Arthritis Introspective will be there to discuss the real mental and emotional aspects of living with rheumatoid disease, so there’s sure to be a lot of good information fluttering around:
Stop in, learn, ask questions, and make yourself heard in real time with real people who care.
Oh, I’ve neglected poor RheumaBlog, and you, for so long! I wish I could say it was because I was out galavanting, exploring the world, and having adventures, but it’s nothing as exciting as that.
Instead, I’ve been right here at home. Which doesn’t mean I’ve spent all my time sitting around on my hiney–no, I’ve had Things To Do. I’ve also been coping almost daily with more RD pain than I’ve had in years.
As has been my old rheuma-dragon’s wont, the trouble has been mainly with my hands and wrists, though he’s been nipping and gnawing at my feet now and then, too. A couple of times, he’s tried out my knees, and one unhappy time he chomped
into my left shoulder (always his fave, for some reason).
The pain the dragon inflicts is truly unpleasant. Fortunately, the worst attacks have been short, lasting only for a day or so. But the Neverending Flare–the background pain that never stops–has slowly increased in intensity so that my hands, or feet, or both, are always in distress. As we all do, I try my best to ignore them, but it’s gotten a lot harder to do. I find myself taking more pain medication than I want to.
And, though I’ve jabbed myself once a week with my latest miracle drug, Enbrel, for almost four months now, the only change has been for the worse. I have an appointment with a new rheumatologist the first week in September (my old,
dearly-loved rheumy up and moved to the other end of the country), so we’ll see what he has to say. I corresponded by email with my old doc just before he left, and I asked about the possibility of trying a new biologic. He said to be patient: the VA requires a six-month trial before any new med will be approved. So, even though I’ll be seeing the new rheumy, I know nothing will change until at least the end of October.
This is frustrating. I know I’m singing to the choir, but waiting for meds to work has to be, after enduring sometimes awful pain, the worst part of this disease. We hear how wonderful these new biological drugs are, and about how many people like us have had their disease slowed drastically and their symptoms all but relieved by them. And yet, for some of us, nothing happens.
I started Humira a year ago October after deciding, with my rheumy, that my symptoms were steadily worsening in spite of the three-DMARD cocktail I’ve taken
for the last four years. So, in addition to them, I took Humira for six months. It didn’t have any effect. That trial finished, the VA approved Enbrel. And of course, it hasn’t worked so far, either. My rheumy said not to lose hope–it can take six months for these drugs to work. But I’m sorry, I’ve lost hope anyway. At the same
time I’ve taken these powerful but useless drugs, my RD symptoms have steadily worsened. Along with the constant pain, I’m now also dealing with frequent debilitating fatigue, a symptom I had little trouble with in the past.
But enough complaining. In spite of the dragon, I’ve been doing a great deal of writing for RheumatoidArthritis.net. Please go check it out. My posts are archived
there, of course, but there are a great crew of other talented writers to sample, as well. All of them have rheumatoid disease at various stages and intensities. I’ve never seen so much good, solid information wrapped up in excellent storytelling anywhere before. It’s well worth your time.
And yes, I’ve been playing with art. I love my new table, chair, and task lamp. I’m starting small and slowly relearning old skills, but I’m really enjoying it. And I’ve been exploring the art and creativity of other artists, many of them published professional illustrators, online. Illustration is the corner of the art world I’m most interested in and have the most natural affinity for. So the more I can learn, the better.
I’ve scattered some samples of what I’ve been doing around this post. I hope you’re enjoying looking at them as much as I did making them.
Finally, Mom has been up and down, heath-wise. Nothing serious, but it’s hard to say from day to day how she’ll feel, so I have to be prepared all the time to stop everything else to take care of her. And, the time is coming, soon, when she’ll have to quit driving. She’s become very impatient in traffic, and her memory is beginning to fail her. I worry about her when she drives, but I know how hard it will be for her to lose that last bit of independence. It’s heartbreaking.
Anyway, once she stops driving for good, I’ll be her full-time chauffeur. With my RD being so ugly these days, I worry about that. Another reason I wish these danged wonder drugs would just go ahead and be wonderful!
So. That’s what’s been keeping me busy and away from this blog. I hope you’ll all forgive me for being away for so long. I’ll try to do better in future.