…And the worst collection of superpowers in the world
In the past couple months I’ve had a plot twist, and it’s brought with it the strange and surreal feeling that I am the character in an Aaron Spelling serial. Not like Donna Martin in her beloved rally to graduate — more of the principal player who gets a killer baby-doll dress and the limelight for one episode and becomes best friends with the whole gang before disappearing into sitcom ether forever more.
Lots of you know I have Crohn’s. I was diagnosed quite a few years ago and I’m lucky that I have a mild to moderate case. I’ve never had to have surgery. My symptoms are easily managed by a combination of steroids and 5-ASA medications. Well, most of my symptoms.
Some days I feel like I’ve been baked into a cement mold because my joints are so stiff. Others I wake up with what feels like metal rebar jamming through my shoulders, knees and hips. My ankles go numb sometimes and other times feel like they’ve been plugged in to a socket on the wrong voltage. Same with my wrists. My fingers have the ability to make Vienna Sausages feel jealous with their awesome swelling and colouration. Sometimes I bruise like crazy, and if sleep were an Olympic sport, I would set new records. Sometimes I feel like pulling up my pants is a feat of excellence. Sometimes getting ready takes so much out of me that I need to celebrate by going back to bed. Sometimes it all just hurts so badly that I cringe if my daughter looks like she needs me to move an inch; if my son needs a diaper change.
I’m lucky. It’s not all the time. But when it’s one of those days, I look up at a flight of stairs like it’s insurmountable. I glance around at the landing surrounded by everyone’s discarded shoes and get comfortable. I think “well this was nice, I guess I’ll just live down here forever.”
Sometimes I forget what it’s like not to have pain. I forget that this strange collection of superhuman sensitivities isn’t ‘normal’. I feel angry and sad that I can’t seem to find the energy or strength to move around in the nitro-fuelled bustle that used to be my life.
“Jesus, Kat. Just get over it. It’s probably all in your head. Maybe it’s depression. Or maybe you just like complaining and you have no pain tolerance whatsoever. Poor baby, with her little aches. GET OVER IT.” Ok. Maybe I haven’t been the kindest to myself, but after a few years you get cabin fever living in a body that stalls every few days.
About a year and a half ago I went to see a new rheumatologist who started testing me for Rheumatoid Arthritis and other associative diseases that come as the luxury Corinthian Leather add-on package to Crohn’s. They ran my blood and reported back that I was positive for both ANA and Anti-RNP – markers used for Lupus and Mixed Connective Tissue Disease, but that on their own those results were neither here nor there.
The ambiguity of the ‘all patients who have these diseases test positive for these markers, but not everyone who tests positive has these diseases’ logic of my doctors made it seem more like a paradox and less like anything I had to deal with. Then, a few months ago after the birth of my sweet Kid Vader my symptoms started coming on strong and my specialist told me she thought it was highly likely that something more ‘lupus-y’ was driving my Crohn’s flares and rheumatological issues. It made sense that I still experienced so much of a flare with joint issues during my pregnancy – a time when so many Crohnies experience a remission.
Then, finally about a month later, I saw it in black and white. It was so anticlimactic I almost missed it. I was having my joints looked at pretty routinely and then 2 minutes later I was being shot with a systemic injection of prednisone. I was handed a prescription for Imuran and a requisition for blood work 2 weeks into the drug’s administration. And I was told my symptoms were concurrent with Mixed Connective Tissue Disease.
There it was typed up on my Patient Care Sheet: Connective Tissue Disease.
“So is it Mixed Connective Tissue Disease or just ‘Connective’? Is there a difference?”
“Well, yes, you are positive for Mixed Connective Tissue Disease. But we don’t know all of the overlapping diseases so we can’t call it that yet…”
MCTD is usually a combination of Lupus (SLE), Scleroderma, and Polymyositis, but it can also include Rheumatoid Arthritis, and a few others that I have no idea about. It’s really hard to pin down, and can take years to diagnose properly —although I’m sure that House could do it in a sarcasm punctuated 44 minutes.
As my specialist talked, I glibly Googled ‘MCTD’ on my phone and saw a ribbon pop up. A ribbon. Light blue and purple. I have a ribbon disease? I mean, I have Crohn’s but still. Do I have another one? Do I have two ribbon diseases? Are you effing kidding me?
“Don’t worry Marley,” says Kelly (because my name now has to be Marley, or something else cute and spirited and laced with positivity) “I know this sorority car wash will show everyone you can still be the student council president!”
And now the twangy guitar has started and the surging 4/4 synth is marking the bouncy steps of David and Donna as they bring the throngs of eager volunteers in their blouson, coral fashions my way.
And sure I’m just sitting there in the doctor’s office and everything is an echo. They’re talking about how I need to call Motherisk about nursing and my GI about what to do with my other medications. I nod. I look responsible and studious. Like I am fine with this and it’s no big deal and I actually expected it or something. And actually this is good news, I tell myself. It’s progress, right? Even though I feel more confused than ever it means we’re closer to the right treatment and hopefully, no more pain. But my head is swimming with questions: what do I actually have? How am I going to do this? What does it mean? What is it going to change? Will it stay the same? Will it progress? Are my kids prone? Are they safe? What’s next?
The invisible vice grip chokes me and tears well up. And that’s not a symptom of anything —sometimes I just want to cry. In fact, sometimes I want to scream. Sometimes I just want to wake up and not have any of this. Sometimes I just want my life to be an episode that wraps with a solid answer and the ‘told you so’ promise of a new day and a knowing smile from my pals at the Peach Pit.
Sometimes though, I’m fine. I’m just fine. And I know I can deal with it one step at a time. One minute at a time. And that’s how today at least, will end. Cue the saxophone solo and the sonorous piano hook.
Next week’s episode might have the answers we need.