Suddenly nothing felt right.
It was a cool morning in March 2012, and I had clearly woken before my alarm. It was still dark outside, the birds not yet chirping, the roads not yet full. In fact, I remember there being no sound at all. It felt chilling, like one of those B-grade horror movies, everyone sitting at the edge of their seat wondering what came next. My eyes were open, but I just lay there in bed for a moment feeling like something was wrong. I couldn’t explain it. Just suddenly, nothing felt right.
I sat up in bed. There it was.
My right arm was broken. How had that happened? I went to sleep feeling fine, so how had my arm broken in the night? I laid back down and felt my shoulder with my left hand. It wasn’t swollen, and the bones didn’t feel out of place. How had I done this? Had I rolled out of bed and hit my arm on my bedside table? Had the impact on the cold tile floor caused a break? Nothing made sense.
I lay there for what seemed like hours, but was likely only a few minutes. I was willing myself to wake from the nightmare, but to no avail. At 7:30 my alarm sounded, and I knew I was in real trouble. I reached over with my left hand to turn the alarm off on my phone and nearly screamed in agony at the pain that this small physical exercise had wrought. I didn’t know anything for sure but I knew I wasn’t moving anytime soon. My left arm felt like the bone had shattered.
I started to cry in frustration. A phone call needed to be made, and I really dreaded making it. I had a new job and I suspected that calling in to say I’d broken my arm in my sleep was going to be frowned upon. But I made it all the same. I didn’t have health insurance yet so a trip to urgent care seemed likely, though I hadn’t thought how I would pay, especially since I would need an X-ray. I thought about all these things as I lay motionless in bed, dozing on and off as needed.
Eventually I got myself up, clutching my right arm like I was willing the bones to stay together. I took a handful of ibuprofen and went back to bed hoping somehow it would feel better soon, wondering how it was possible to feel that much pain out of nowhere.
Several hours later, I woke up to the afternoon sun streaming through my window. Without thinking about it, I got up and went to use the bathroom. It wasn’t until I was washing my hands did it occur to me that I had been miraculously cured! I moved my right arm and it no longer felt like the bones were jostling together under my skin. There was a slight ache but not nearly as bad as the pain I’d experienced that morning. I was so relieved! I went back to work the next day with the only logical explanation I could think of, it had been a fluke.
In fact the whole experience slipped my mind until a few weeks later when I was at work, getting up from my desk to go to the fax machine. My right hand was hurting and I looked down to see the skin around my knuckles was shiny and an ugly shade of purple. I flexed my hand, moving my fingers, and the whole experience was very painful, and felt very familiar. It was then that I decided to go see a Rheumatologist. And the rest of that tale became my history.
Over the last two years I have experienced many types of pain. Not often, though, the type of pain I was first faced with when I learned of my disease. Usually it’s a dull ache throughout my body, or a searing hot pain around the flesh on my knuckles, and hands. Gone are the days of feeling “broken”.
Until two days ago that is.
My type of Chemotherapy is a drug called Remicade. This is the third infusion type drug we have tried. My Rheumatologist believes this is “the one”. While it has been working a bit, my flares lasting not as long, and are more spread out, it’s still not strong enough. This coming Wednesday, we are “upping the ante”, or in other words increasing my dose. It’s supposed to help. But “supposed” isn’t a word I have faith in. I want it to work. I don’t want to be in pain anymore.
I’ve been taking an awful steroid called Prednisone for two and a half years. It has caused me to gain 65 pounds, distorting my body and face to something I no longer recognize. I look in the mirror at this person who isn’t me, this body that isn’t mine. Moonfaced, puffy cheeks, double chin, with a paleness that no amount of sun will tan. My stomach has grown round, making it seem like I’m carrying a child, when in reality it’s mostly water weight from Prednisone bloating. Do you think I like looking like this? People look at me thinking I’m fat, that I have no restraint when eating, when in actuality, I barely eat anything at all. My appetite having dwindled to nothing now that my stomach has shrunk because of medications. I look disgusting. I keep buying flowy dresses that hide my size, because anything else feels hot and uncomfortable on this awful body.
Two days ago I woke in the middle of the night and all I could say was “No”. My right arm felt broken from elbow to shoulder. The pain was so quick, so excruciating. I struggled to sit up, crying out at every unwanted movement. It was hard. Because at that moment my body was also dealing with cold chills. My skin was slick with sweat from a hot flash only moments before, and now it worked against me as I shivered, attempting to pull the covers around me with my left hand, wincing at the pain surrounding my right.
And there was nothing I could take. Long ago I had become allergic to ibuprofen after using it too much. My Remicade infusion isn’t for another few days, and we’ve been tapering my prednisone. It’s so important to get me off it, while it’s likely the pain is the result of the tapering. My body is not happy at the lessening of its beloved steroid. And I’m already at the max of my pain medication.
So this time… When my body feels broken… Well too bad for me. There’s NOTHING I can do about it. Sure I can go back to homeopathic remedies. I can attempt a hot shower to loosen my joints (it would have to be a couple of hours under the hot water to work that particular miracle), I could take some herbal supplements, like Turmeric, I could do some breathing exercises (though likely it will be swearing under my breath because it’s hurts so God damned much).
I lay here wanting it to end. Not getting any sleep, because how do you sleep when every tiny muscle movement makes you cry. Everything feels broken. I hurt everywhere.
Everything is broken.
I feel broken.
I am broken.
To help my struggle with medical bills and housing please visit my donation campaign at GoFundMe. The link is on my home page.