My RA started textbook style – hands and feet aching, mostly in the morning but soon all the time. Lifting things got harder and harder. Stiffness went to bed by my side and woke up grinning devilishly next to me. Exhaustion slipped its long, smooth fingers around my neck and began to squeeze. Sleep slowly slipped away like a lonely canoe on a misty lake that seems like an apparition in the distance as it moves further and further out of reach.
My breaking point – the point when I realized I had to go to the doctor – was when I had the weekend off from work and spent the entire time scooting across the floor on my butt because I couldn’t stand on my swollen and inflamed feet. All weekend I waited until the very last minute to go to the bathroom because getting up and down off the toilet suddenly seemed like skydiving when I am afraid of heights – a foolish and ridiculous notion and something that can’t be done.
I spent the first two years after my diagnosis of rheumatoid arthritis in a flare. Yes, I flared for two years NON STOP. It was never an issue of “if” I was in a flare but rather how much I was flaring and what was swollen the most. There was no mercy. My body just went…..ape shit.
I had a panic attack a month after I was diagnosed out of fear and……panic, because of what was happening to me. I couldn’t help it and I couldn’t stop it. I did yoga and I ran on a daily basis before my disease. That is how I de-stressed. At the time I was so bad that for long stretches of time my doctor told me not to exercise at all because the inflammation was so intense it would do irreparable damage to my body. So, now I had no stress relief. My body felt like it was not my own.
Let’s fast forward to the present moment. Thankfully, I am doing better and have found a cocktail of meds in combination with diet changes and supplements that have given me some relief. But…..my body has already rapidly overcome some pretty serious medications. I can’t go back to those – ever. And, although I am doing much better on my current RA meds, my fibro is kicking and biting and screaming at me on a regular basis. My injection last month was delayed by five days due to insurance rigmarole. I felt every second of it. That delay had a ripple effect for these last 30 days.
That tiny delay in meds led me to where I am right now – sitting on the couch with my feet up and ice on the tops of my feet. I woke up this morning with my feet so swollen they looked like sausages. It has been like this all day. I have been fighting the fluid and the pain in my feet. When I try to step down the inflammation multiplies and my feet expand rapidly so that I slosh when I walk – like water in a hot water bottle. The ache is shattered by stabbing pain that appears and then disappears in different places on the tops of my feet. I took a shower and afterwards I discovered pockets of inflammation nestled in between the tendons on the tops of my feet. They looked like bubbles or little domes and they squished and were excruciating when I touched them.
This flare set off my fibro so that my skin has been untouchable for hours. By this I mean no one can touch me without me crying or smacking them. And, I am not just hurting around my feet. The pain is getting bigger and spreading all over my body. I have taken three Norco so far for the pain and they just took the edge off for a short period of time. I am up late and not sure I will be able to walk in the morning. I have barely been able to hobble all day. I attempted to work but had to go home early because it was getting so bad I wasn’t sure I would be able to drive myself home if it got any worse. My hips have also been starting to stick. The ache is deep in my hips – so deep it is like a buried treasure long forgotten by pirates. And, when I say stick I mean they only move so far and then just stop, like they are against a wall with nowhere to go. I can’t move them any further and I can’t do anything about it until this damn flare is over……whenever the hell that will be!
So, I am doing better but this damn flare is claiming me in this moment – unmercifully and with a vengeance. The only weapon I have is the care and love of my family and friends. It reaches me when nothing else helps or makes it better. They help me to be patient, despite the wall of fear that I am backed up against. They help to remind me that this moment is impermanent and I am strong enough to get through this one more time. I wrote the following poem in honor of them….
sausage toes and fingers,
pockets of fluid invade my body like demon soldiers conquering a new land
normal functions become hills and mountains,
daily tasks are questionable,
who would believe that my body is monsooned with pain and inflammation?
Russian body part roulette,
digits crooked, deformed, and bent,
my cheetah pimp cane is now an extra appendage to be used as needed like a kick stand,
my smile is a guide,
but also a mask that conceals truth so sanity can prevail,
telling can only reveal so much strength and so much pain for others to weakly grasp,
sleeplessness shrouds me often and strongly,
it stretches over me like melted cheese,
wrapping me in sticky, long tendrils that hold fast and leave gunky residue when I try to clean it off,
staring at the ceiling in fear and pain,
my body is limited and trapped like a mummy in the shroud of restriction,
eyes and heart searching hungrily for relief and a path back to my normalcy,
the world around is tossed in the eye of my tornado,
routine is stripped and torn from the ground like a metal trailer,
everyone adapts and picks up the pieces hoping to put my shanty back together when I feel better,
my love and my babies reach for me,
though the screaming wind and torrent of disease wails in protest and icy anger,
a part of me calms when they touch me – when they surmount the invisible beast,
the beast recedes into the shadows,
simmering beneath my surface and cooking inside my skin,
waiting till the next hole to come raging through the cave door rolling over me again