"Losing ground"

I am feeling a bit blue after seeing my rheumatologist yesterday.

It wasn't a positive appointment - not because she wasn't awesome, as usual (she was) - but because it brought home how much different things are than they were even a year ago. I'm "losing ground", she said, as she went gently tapping and squeezing from joint to joint, pointing out heat and inflammation I hadn't even noticed. My RA has moved into joints it has never even mildly effected: both feet, right elbow, right shoulder.

She also caught me out in a recent rebellion:

Dr. P, innocently: Hmmm. I wonder if you're not getting enough methotrexate?

Me: Uh, well, I did actually cut my dose in half without telling you...

Dr. P: I KNOW you did.

Oops. In my defense, my hair was coming out in clumps. We have agreed (both of us a bit grudgingly) to raise my dose back up to three quarters of what it was. But I'm also going to start Plaquenil, and a ten-day course of Prednisone, too. If that doesn't work, it will be time to move on from Enbrel.

I really hate the idea of being so drugged up. Celebrex, methotrexate, plaquenil, prednisone, Enbrel, plus my heart meds. I especially hate methotrexate, even though the hair loss is my only real side effect. I just hate it on principal, and hate that I've been taking it for seventeen years.

I'm also nervous about trying a new biologic, if that is where this road takes us. My rheumatologist believes patients see diminishing returns after switching off of their first one. I've been taking Enbrel for ten years now, and at the beginning, it was truly amazing. I will always be thankful for those years of almost complete remission in my early twenties. Now I'm scared I won't feel like that again.

I try to remind myself that I can handle whatever this disease throws at me, because I am already handling it. And maybe, as family have suggested, and as Cathy suggested after my previous post, stress has something to do with it. I've been absolutely wiped out by this semester, as much as I enjoyed what I was taking. I worked a research job, wrote eight papers, and just finished a really intensely difficult exam in which I wrote 3,000 words in 2.5 hours, plus I'm co-chairing the Walk to Fight Arthritis and doing maid of honour duties for my best friend. I love being busy, but a lot of this recent busy-ness has been mixed with anxiety, and I haven't been sleeping much.

I will start my new meds this weekend, and see how things go. I'll try to get more sleep and stress a bit less (school is finished for the year, which should help). And I'll see my rheumatologist again in eight weeks or so. And just keep going.

Oh hello, shoulder

As my hips have gotten worse, sleeping has become problematic. Well - it's become more problematic. I've never been a great sleeper, and many nights I'll head off to bed at midnight and still be lying there wide awake at 3 a.m. Now, though, I'm not just lying there, but doing so very uncomfortably.

Sleeping on my side puts too much weight and pressure on my hips. Sleeping on my back hurts too, because my right hip likes to loll to one side or the other. Until recently, sleeping on my stomach felt lovely - my hip was straight, well-supported and not bearing any weight.

Last week, though, I was lying on my stomach waiting to fall asleep when I became aware of an odd ache. It's funny how a new joint flare can confuse at first. I mentally filed through all of my affected joints, trying to figure out what was hurting. Feet? No. Knees? No. Hips? No. Elbows? No. And then I realized it was my shoulder, which was extended up under my pillow. Dammit.

I've never had shoulder problems, but since last week my range of motion has decreased and the ache has continued. It feels as though I'm back where I was as a ten-year-old, when arthritis played an expert game of hide-and-seek, hopping from joint to joint and leaving many of our efforts at treatment in its dust. I never know where it's going to turn up next.

I was in full remission from the age of about nineteen until I was twenty-seven. Then in the last year and a half, bang, bang, bang, this sneaky disease has attacked hips, feet and now, apparently, my shoulder.

I see my rheumatologist in two weeks, so I know at least we will play catch-up together.