Friday, December 30, 2011

Resolutions and Irrational Self-expectations

This blog was written as part of the Chronic Babe blog carnival on new years resolutions.

As I think I've said before, I'm not really one for new years resolutions. I tend to save my personal resolutions for my birthday, and my professional/academic resolutions for the beginning of the school year. For me, those times feel more natural for goal-setting and making changes. Plus, January and February have always been the most depressing months of the year for me—the holiday decorations are down, it's dark, cold, and wet, the second semester is dragging along—not exactly the best time to start lecturing myself about all my perceived problems and failings.

Saturday, December 17, 2011

On Pain, Language, and Perception

Physical pain does not simply resist language, but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.
          —Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (4).
In many ways I've had a good week—I received great feedback on my research and teaching, spent quality time with friends, prepared for the holidays, reconnected with loved ones who live far away, attended an engagement party for a dear friend, and welcomed a new baby into my extended family. But I've also had one of the most painful weeks on record since last May (= the vasculitis debacle). And everything fades into a sort of dull background when my mind and body are so exhausted by managing the pain.

Sunday, December 11, 2011

A Note from the Trenches

So after grappling with my injection-related anxiety for 4 days, the MTX injection was a total non-event.

First, I found this handout from the Canadian Rheumatological Association, which demystified several aspects of the process (how far should the needle go in? what happens if there's air in the syringe? do I need a "real" sharps container? etc): Learning to Self Inject Methotrexate at Home (link to PDF download).

Then, on Friday evening I was talking with a friend and joked that despite 10+ hours of tattoos and several visits to an accupuncturist, I was still afraid of self-injection. He reminded me that his ex-wife was diabetic and shared his secret for pain-free injections. Which I will share here, in the hope that I can relieve a few other people's injection worries: rather than puncturing the skin forcibly, like the syringe is a dart, "pinch an inch" of skin in such a way that when you release the skin it falls toward the needle. The needle will slide in almost painlessly and then you just push the plunger and you're done.

Granted, I'm using very small insulin needles to do my injections, so your mileage may vary with larger needles. But it was swift, easy, and less painful that plenty of the accupuncture I've had, and WAY less painful than the Imitrex pens I've been administered for migraines (always by nurses-- never had to do one myself).

Now on to learning to pace myself when it comes to holiday events...

Wednesday, December 7, 2011

Self-injection, Pity Parties, and Speckled Cells

I like my new rheumatologist. So far she seems insightful, focused, and kind. She wants me to give the MTX another month at a higher dose, but she's going to have me switch to the injectable form. They'll do the first injection in the office this Friday afternoon, but from there I'm on my own. Gulp. Time to ask my Type 1 diabetic friends for pointers. In the meantime, I discovered that my ANA appears in the speckled and nucleolar staining patterns. I find the details and vocabulary of the immune system really fascinating.

I ended up spending my whole day at the hospital— between the doctor visit, labs, and xrays—with no lunch. I had to cancel a couple of meetings with my students in the late afternoon which made me really frustrated with myself. I realize of course that I couldn't know that it would take that long, but by the time I was done (hungry, sore, exhausted, freaked out about self-injection) I just burst into tears in my car. Once that little pity party was over, I drove home and took a nap, which I suppose was the upside to having my schedule totally turned inside out. Instead of feeling pressured to go to campus and cram a bunch of meetings in, I just cancelled everything and went to bed for a few hours. I woke up feeling significantly better than I have in a long time, syringes and wine-free holidays be damned.

In a shining example of why it's so nice to have a network of fellow spoonie bloggers and twitter denziens, Leslie at Getting Closer to Myself just posted on Sunday about MTX and "The Art of Self-Injection" and talked about a tool that helps the needle-averse do injections. I think I need one. When I went to the pharmacy to fill the prescription, the pharmacist asked: "Do you have enough syringes at home?" Umm... no? My injecting experience pretty much stops at basting turkeys and irrigating my gums.

Tuesday, December 6, 2011

Why I Write.

This post was written for the current PFAM blog carnival, hosted this round by Sharon at Bed, Body, and Beyond.

I have been avoiding writing this post. No, scratch that, I have been avoiding writing. Period. I could say this is because it's the end of the semester, that I'm busy with teaching and editing and advising. I could say that I've been busy preparing for the holidays, that I haven't been home much. But none of that would be entirely true.

I have a Flannery O'Connor quote in my profile that reads "I write to discover what I know." And right now? I'm avoiding writing because I'm afraid to face what I already know. I never wanted this blog to be only a place for me to whine and complain, and I feel like lately that's all I've been thinking about. I've been moping about all the things that illness has taken from me. Because the truth is that despite a few good days, the past month has been immeasurably difficult. And part of the difficulty comes from the fact that I persist in the charade that I am still as able-bodied as I ever was. When I'm not.

Friday, December 2, 2011