If you follow me on Twitter, it’s likely become apparent that I’ve been hog-tied by Arthur and he is exacting a special kind of torture on me lately.
I don’t always like to write about the low points, because I feel some Herculean (or is it Predsonian?) need to hold the whole world up on my shoulders; but I was reminded by the wonderful women behind the For Grace – Women in Pain Conference recently that these moments are just as important to share. We don’t always talk about them, because vulnerability is scary. Yet if no one says anything, we start to believe we may be the only one hitting bottom on that given day.
Let’s back up. I started Actemra infusions last October, and held out hope that this would be the med to send me on a path to remission. Waiting for it to kick in, I got by on extended release morphine, without it… well let’s not go there. After a couple months I made the decision to wean off of morphine so I could judge how well the Actemra was working, because I was so utterly convinced it was.
What ensued were knees that are scarily swollen to the point of complete immobility by the end of the day, disks and sacral joints that took two trips to the OR to help alleviate pain, a back that refuses to lie flat at night, and now un upper body rash that through biopsy was just confirmed as a simultaneous staph and rare fungal infection. Don’t I sound fun?
For some reason, I was still convinced Actemra and I were on the same page: heading toward remission. Hope is a funny thing, and has left me in a state of shock since my sit down with my rheumatologist last week.
He entered the room and said, “I’m afraid to walk in here and see how you’re doing.” We both knew in our gut how this appointment would go. After learning of my dual skin infections and need for aggressive treatment (hey – at least its not med-induced acne this time!), I was still fixated on how this would delay my upcoming Actemra infusion.
“It’s not working.” His words passed through me without incidence. How did we go from extreme hope to this?
Discussing my dwindling medical options, the conversation hung in the air like an eerie fog. First, I get over the infections. Second, I hold on for dear life because Arthur is about to get “rough” while I have to halt rheum medications. Then, we’ll go from there.
I call my husband, my family, report the findings in a clinical manner, and label this patient as “fine and surprisingly not upset.” When truly, I was in shock.
To manage the growing pain on the freeway drive home, I cranked up the volume and began belting out La Roux, “This time baby, I’ll be bulletproof.” I burst into tears. I sing louder, realizing I feel far from bulletproof.
These are the low moments in our disease journeys. When we feel scared and alone not knowing where the hell we’re headed next. Even though I clammed up publicly, I reached out to my autoimmune medical friends, from fellow advocates to various healthcare professionals. We talked life and strength. I shed more tears.
After allowing myself to be sad for a day (cause that’s healthy from time to time), I woke up the next morning and brushed my shoulders off, Jay-Z style. I started being proactive, still in shock mind you. I saw my pain doc, we refilled the morphine so I can function over the coming weeks. I made goals, so I can feel in control over something. I’m being kind to myself – its not my fault.
Now several days out from the initial shock, I feel a renewed strength from our autoimmune community and I thank you all for that. I’ve been proudly wearing my CureArthritis.org band and using it as a continual reminder to ask myself, what can I do TODAY to help cure arthritis? Focusing on that allows me to keep all of this in perspective and remember that this too will pass. I’m not alone in all of this, and neither are you. That keeps me smiling.