Today is the third day of a dull, all-over flare
about an hour ago.
I injected my latest Humira dose the day before yesterday. And I thought, “well, maybe I’m hurting a lot more today because I’m at the end of that last, two-week dose.” The thought was both hopeful and resigned. If I was feeling worse because the Humira was wearing off, that meant it was actually working (I felt better after taking it). That was the hopeful part. On the other hand, more pain might simply mean my rheuma-dragon was getting stronger—and the Humira was another useless weapon.
But it’s only been a couple of days. Hopeful Wren tells me to be patient, let the Humira kick in. Pessimistic Wren tells me to chuck the happy-crappy and face the truth. The stuff doesn’t work.
Then rational Wren chimes in. These drugs, she says, can take a long time to work. Usually, three to six months. It’s been almost three months, yes, but that doesn’t mean the Humira won’t ever work. And you know when you see the doc, he’s going to tell you to be patient and give it another three months. And you’ll nod and say OK because, really, what else are you going to do?
Sigh. Naturally, I hoped this fancy, new (to me) biologic DMARD would quickly turn the tables on my rheumatoid disease. I was looking forward to waking up in the morning without being as stiff as the tin man. I thought it would be so nice to put on my house robe with hands and fingers that didn’t gripe and yell with pain. I was looking forward to swinging my legs off the bed and standing up—and not even noticing my feet because, of course, there was no reason to notice them. No stiffness, no pain, no nothing.
And I was looking forward to going through my days without being constantly reminded—by suddenly aching joints, sudden twinges, constant low-level soreness, and a mild but insidious fatigue—that I have an incurable disease that may cripple or even kill me one day, whether I take medications for it or not.
Do you guys go through this too? This constant, involuntary inner dialogue about being sick? I get so tired of it. My mind’s constant grousing makes me feel like 1) a weak, sniveling wimp, 2) a complainer (even if I don’t say anything out loud to anyone), and 3) a histrionic hypochondriac.
Yeah, I know better. I’m really not any of those things.
My life up until age 31 was perfectly normal, with all of the normal illnesses and injuries: chicken pox, skinned knees, an occasional bout of flu, a sharp pneumonia and a couple of bad sprained ankles when I was a teen (platform shoes), and seasonal colds. I only thought about feeling bad when I felt bad, and that was relatively rare.
The same applies to those six years when my RD mysteriously went into medication-free remission. The only difference was that I can only recall a single cold during that period.
But when my rheumatoid disease is active, whether it’s mild or severe or somewhere in between, it forces my mind to dwell on it. And that makes me question my own feelings, and sometimes, my own reality.
On to more pleasant news: Mom and I dragged out the decorations and brought Christmas into our new home. This is a hard time of year for her; Christmas just hasn’t been the same for her since my Dad died, and the holiday brings with it 59 years of memories—with Dad as the central character.
But this year she was the one who brought up decorating the place. I’m so glad! She doesn’t miss him less, but maybe living in a place that’s not connected to memories of Dad is soothing her pain a little bit. I hope so. We had a good time putting up the tree, choosing and hanging the ornaments, talking about the memories each one brought to the surface, and setting out Santas and elves and pinecones and sparkly candles all over the place. It made us both laugh and smile, and you know what? There’s nothing better in the world than that.
Thanks for listening to me rant today. Felt good to put it in words—a catharsis, in a way. I hope this post finds you feeling good and enjoying the holiday season and the close of another year on this precious old planet we all call home.