From “Confessions of an RA Superbitch”

This just popped up on my Google Reader, and it was too good not to share. It’s nice to know that other people see what we’re going through, eh?

Hubby: Honey, you are doing so well. You manage to get up every day despite debhilitating pain and stiffness and still remain the most positive person I know.

Me through tears: You don’t get it. The ONLY reason I do get up every day is for you and our son.

Hubby: But that’s ok because you get up.

Me through worse tears: You don’t get it. That’s the point. I don’t want to.

Hubby: No! The point is that you DO…because if I were you, I don’t know if I would.

Via Confessions of an RA Superbitch

D(r) day

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Today was my long-awaited trip to see my rheumatologist to find out if we could come up with some kind of plan to get me back on track. The Professor was with me, and he was very good at making sure I didn’t leave anything out—and if I did, he piped up. I definitely felt as though she heard me and understood how unlike myself I’ve been feeling.

The NP seemed shocked by how poorly I was doing when we ran down the list of symptoms: lots of pain, joint pain in new places (like my jaw, which pops all the dang time now), sleeping poorly, muscle pain, fatigue, brain fog, the weird (and likely) pleuritic chest pain…. It felt like the list went on and on. Both she and the student physician’s assistant with her gave me a full exam.

She decided to pull me off the sulfasalazine, but keep me on the methotrexate, the hydroxychloroquine (Plaquenil) and the NSAID. (She was flatly against the idea of Celebrex, which I suspected she would be. We’ll see how Dad takes it, though.) I’m back on the Enbrel, and she gave me a few samples to take home until I can get things straightened out with my insurance and the co-pay assistance program. Since Darvocet was taken off the market (and I wasn’t a huge fan, anyway), I’m going to give Percocet a try. If that doesn’t work, I’ll be on the Tylenol with Codeine, since I’m super sensitive to pain killers. She also suggested a steroid injection before I go up to Canada for the holidays, since it should help me get through the stress of driving up and driving back.

I’m hopeful this will work. I was certainly doing better while on Enbrel, and maybe in conjunction with the Yellow Dart and the Plaquenil, I’ll start feeling like myself again. Maybe I’ll even be able to pull my heels out of the closet again. That seems so far from where I am right now. But after that appointment, one phrase is back in my vocabulary: I hope.

another recall

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Right on the heels of the methotrexate recall from a few weeks ago, here’s another: The FDA pulled Darvon and Darvocet from the market. It is the most recent painkiller to be prescribed to me, but as it’s not one I took very often, it’s not the blow the MTX recall was. Still, it’s just one fewer weapon in my arsenal to fight the psoriatic arthritis.

It’s kind of scary that, after decades on the market, a drug that was thought to be safe could be pulled off, just like that.

It makes me wonder what we’ll learn about the drugs we’re on now 10, 20 or 30 or more years down the road. I guess it’s a balancing act for patients: On one side of the scale, we’ve got to trust our physicians, pharmacists, the FDA, everyone involved in allowing us some semblance of health; on the other, we’ve got to do the research ourselves and trust our guts if we feel as though something isn’t right for us. I guess it all really just underlines one thing for me: the need for a cure. For all of us, regardless of our autoimmune disease. One day—maybe even within my lifetime—I would love to be able to take some treatment, pill, whatever and be done with it all. Until then, though, I’ll keep slugging alone, taking whatever drug straddles the line between helping and harming.

it’s looking like a limb torn off or altogether taken apart

It’s been a rough … well, I’m not exactly sure how long, but it’s been awhile.

I’m in the kind of slow decline into a flare where each day is just ever-so-slightly worse than the one preceding it. But since the increments are so small that I don’t realise it until I’m thinking back to last week or last month and it hits me that I felt so much better, then.

It hit me this morning when my mum called while I was getting for work. After just saying, “Hi, mum. … I’m doing alright, and you?” she asked if I was sure I was doing OK because I sounded “sad.” Well, dang, Mum, I guess I am a bit sad.

I know I have no real cause for complaint; despite my illnesses, I have a pretty awesome life. I feel like a jerk for adding a “but”—but there is one, after all. I guess it’s just a piling on of little things: a long and exhausting flare, a job I don’t love, medications that don’t work and a host of other insignificant details that, taken together, just feel like too much right now.

I know everyone feels this way at some point and that those of us with chronic illness are perhaps more likely than the average Joe to feel like it never ends, but that doesn’t make it easier to deal with. I know the steps I should be taking to try to make things better. I just need to buck up and get to it.

Today, it feels like that’s easier said than done.

just one more before i go (to bed)

Well, I just got home from work, and the heady mix of an unexpected 15-hour day and sad songs on the drive home has made me kind of melancholy. So, to try to break the mood, I’m going to do a happy list that turns bad or sad things into positive ones. We’ll see how well I do.

  1. Working so much I never see The Hubs. On the plus side, I value the time I spend with him even more.
  2. Working crazy long days at the paper. It gives me time to make sure my work can be the best I can make it.
  3. Stagnation. It makes me want to strive to do something better.
  4. Instability. As scary as it is, it’s also kind of exhilarating; still, it makes me enjoy the small pockets of stability I do have even more.
  5. PSA. Maybe I’ll just come back to that one.
  6. Being so exhausted I can’t think of anymore. That means I get to go to bed! G’night, everyone.