My life is an endless cycle of detoxing, retoxing and hoping for the best.
Before I left work for my latest five day epidural infusion, I sent my coworkers the following gifs to explain my upcoming absence:
Translation: Going to get my wiring fixed up by my doctor with the help of some magic potions so I can get back to dancing (and working).”
(They’re nerds, they get the Doctor Who and Harry Potter references (or at least they pretend they do).)
When I talk to friends about what happens during these treatments, I talk about it like a 5-day nap with bad pillows and terrible cable channels. I keep it light because I don’t want pity. I keep it light because they don’t really want to know.
But this time, there were complications. I couldn’t pop out of the hospital on Sunday and be at my desk ready to work on Monday morning. And I want people to understand just what happens while I’m gone.
It’s not a trip to a low budget spa for a nap. (Despite what I might lead you to believe.)
The reality is that treatments are incredibly stressful. I watch my parents fill with worry as the first day starts. Armed with one too many articles about the risks and years of false hope that this next treatment will be the one that changes my life back.
I answer the same questions about my condition for every new nurse and fellow on my case that day. I laugh with them at the ridiculousness that this pain condition started not after a car accident that I was lucky to survive, but rather a running injury a year and a half later. What I want to do is scream about just how unfair that was.
After the laughing come the platitudes. We’ll get it right this time. We’ll get you back on your feet in no time. We have this new idea for a drug combination. Oh, Dr. So and So is the best in this year’s fellows, you’ll be great. Hold tight kiddo, this will be over soon.
I spend the first two days sleeping on and off. Asking my family to bring me anything other than hospital food. Every few hours I have to get a nurse to help me out of bed so I can go to the bathroom. I beg them to bring me bags of ice to numb my back from the intense itching caused by skin breaking down under the tegaderm holding the epirdual catheter to my skin from the base of my spine to my shoulder.
I’ll bring a couple of books and some knitting but I’ll know that I really won’t be getting more than a row or two knit a day and that I might not even crack open the books. But I bring them anyway because I am certain every time that I’ll handle it better.
I go to PT at least once a day, but everything I know about moving my body through space is off because of the (intentional) numbness in my hips and left leg. I practice taking steps and moving my leg in ways that cause excruciating pain in real life. I do exercises in my bed every few hours to get as much movement in as possible while undergoing treatment. When I get released, I insist on a post-hospital milkshake.
This last time, there was a spinal headache and severe muscle spasms thrown into the mix. There’s nothing like leaving the hospital after a pain treatment and being in more pain by the time you get home than you were in when you got to the hospital. Or calling the pain clinic because after a hospital stay with fellows whose bedside manner was worse than sandpaper because your pain is so intense and so widespread throughout your body that you cannot move and you cannot stay still. You’ll even tearfully admit to your mom that she was right and you really did need her to come over to make it better.
But it’s not just the physical
Throughout the whole process, I am counting down the days until I can dance again. Which is really 2 countdowns – the first one is to the end of the 48-hour waiting period to resuming exercise and the second one is to the realistic day of my next class. A day that is never the one I think it will be. Then I worry about how to deal with the fact that I will have lost strength, flexibility and spatial awareness and how I can explain that to a dance teacher in a class of 25 ballerina wannabes in 30 seconds before class.
I am also worried about my client projects and my day job. Did I really upload all the right files to the shared drives? Are they going to have questions that my coworkers can’t answer? Should I try to work even though I am drowsy and still in pain? Will my clients find out I am the “sick” one? Will my coworkers judge me for missing work again? Will they be annoyed that I still won’t be 100% when I come back?
Time to detox and recover from treatment
And then it is over. My CRPS will be battled back to a 3 or a 4 on the pain scale. I’ll be able to shave my legs and wear real pants for the next few months. I’ll get back to my 6-7 dance classes a week after about 2 weeks off. I’ll go back to green smoothies, mostly clean food and all the vitamins I can find to support my body and the limit effects of the CRPS. I’ll detox from the intense drugs and junk food. I’ll work hard to ensure that this treatment lasts longer than the last one.
And I’ll keep hoping that one day they’ll find a cure.