Thursday, March 31, 2016

What RA Pain Does To Me: A Practical Story About Just Yesterday

So it been a crazy month with as you all know, worsening back & hip pain. 
It's so crazy, that just yesterday I was in pure agony. 

It's almost remarkable how pure the pain was. So intense was I panicking, whimpering. 
I wanted to cry, but I couldn't. The tears wouldn't come so I just dry sobbed, my face contorting in ugly ways. I just wanted my husband so badly, by my side. He always makes everything better. Knowing exactly when to laugh and when to cry as well. 
Right now I could use his gentle pat and reassurance that I would make it through, I would survive this, and the pain wouldn't actually kill me.

But he wasn't here, he was at work and it was up to me to make myself feel better. 
So I did everything I knew to do. I got up and painfully shuffled over to the pantry where my trusty cane was hidden -the perfect spot in the center of our tiny place, right next to my swiffer. 
Two perfect representatives of my disability. A cane to help me walk and a mop that I don't have to ring out, scrub with, bend over, or carry a bucket. I can just spritz, push, and then throw away the dirt. 
<I could write an entire post on just my swiffer mop and the proud independence it's given me.> 
But anyways, back to the story. 

So, looking into the closet, I grab it and two ice packs out of the freezer, tucking them into my hip and back and I let the cold do its job. Freeze the pain. Even with the cover and blanket, my skin still turns bright red with the pressure with which I beg for them to work. And it did, for as long as it was cold. But our Miami warmth doesn't let anything stay cold for too long and the ice packs melt away way too soon. 
Heat now, right? Yes, I was remembering. My first aid lessons for any trauma or inflammation. RICE. Was that right? Cold, then heat? Should work. Will it? I don't know if this trick applies to people with a faulty immune system. Whatever... 
I try it anyway and add in a 20mg tablet of prednisone for good measure - remembering my dear husband's advice from the night before. When the pain first reared its ugly head. 
   "Here, boo. Take this. Did you forget your infusion is next week?"
   "Oh yeah... That's right. Great!" I rolled my eyes, "perfect timing for me to be working on this speech." 
The flashback is so clear in my head. It's funny how I remember his words of wisdom whenever I'm alone and don't know what to do. It's even funnier that he remembers all the advice I forget to give myself! I'm the one who's had RA for 20 years, he's only even known about RA for 7. 
I guess he's really is becoming my new "cane" or "crutch" or whatever you want to call it. 

Eh who cares, I think to myself with a smug smile, I can't do it all--be in pain and remember what to do about it!
Then, more solemnly, I think, I need him. No one should do this on their own.
And I jot the thought down. Adding it to the running list of ideas I have to help my RA community. 
"Ways to strategically and manipulatively encourage patients to find someone, anyone -doesn't have to be a spouse, could be a distant family member, a cousin, a friend, a colleague- anyone to confide in." RA is so isolating -I know that personally. It's so hard to make friends when I'm constantly struggling to keep up with people even 3x my age. Not to mention, the worry that any outing means they can't relax and enjoy because they're having to recalibrate their speed down to my level. 
But anyways, back to the story.

So I pop in my prednisone, silently praying for it to work and I turn on Netflix to one of my favorite shows, The Vampire Diaries. 
Utilizing one of my other techniques in managing pain and flares. Healthy distraction. 
Plus, this show always puts a smile on my face. I'm not taking about RA, I'm not thinking about RA, I'm enjoying escaping into the world of vampirism where regular human beings can be transformed into the supernatural. They can run fast, they can heal instantly, they can live forever, and they don't have to consider the future. 
"How awesome would that be," I think to myself with not so many words, "I wish vampires were real. I would want to be one, just so I could be cured of my RA." 

Oh great, here I am thinking about RA again. But next thing I know, the episode is over and the ending reminds me to not leave the cold on for too long and put my ice packs back in the freezer for later. How responsible I'm being! I'm so proud of myself. 
So I decide to go back to my secret project and work some more. 
Standing this time, trying to move around. That's supposed to help right? Nevertheless, a few minutes later the pain peaks, but I push through anyway, reminding myself I'm supposed to move around. Laying down watching The Vampire Diaries won't help forever. So I continue my work, focusing on my "rheumy" friends I care so much about. 
Over an hour goes by and I feel like I'm going to collapse. My knees now are hugely swollen and I struggle just to crawl into bed. 
"I just need a little break. No more moving."  
So I lay down and put my favorite cutting board on my lap, using it like a desk to hold my papers. Not long after though, the pain intensifies and I start really getting scared. 
So I took a half of a pain pill and waited. 
The pain got worse.
I have to pee but -oh God, no- I can't get up. It hurts too much. 
Bargaining with my subconscious, I decide to go restroom and grab my ice packs from the freezer on the way back to bed. 
I knew I would need them later, I thought to myself, figuratively patting myself on the back for thinking so far ahead. 

I apply my ice packs with their covers and press them deep into my hips, forcing them to work. 
I sigh and wait, but nothing happens. Nothing except more pain. 
Oh my goodness this cannot be happening. What if I this doesn't go away? What if I can never get up? What if I have to pee again? I felt myself starting to panic. 
So I pop in my mouth another 20mg of prednisone. I'm at 60mg now in less than 24 hours. 
This has to start working soon, doesn't it? Does this drug even work like that? I don't know if I'm doing this right. I add another a half of a Percocet, just because I felt myself getting really scared of the pain. 
It hurts so much not even my "healthy distraction" is working. God, it hurts. I find myself literally crying from the deep hurt and I remember why I need pain in my life. It's so humbling. Never could I ever get big-headed about all my ideas. The pain reminds me that I'm really nothing more than the product of the mercy of a redeeming God and caring friends and family. 
The pain reminds me that without them, I would be nothing more than a heaping mess. 

Its at that time I decide I should see another episode of The Vampire Diaries and put on my hot pack. The pain peaks higher and higher and I start getting even more terrified. 
How is this happening to me? Shouldn't my pills and my packs stop it? Lessen it? It feels like fire and a sharp knife sawing away my legs, right at the hip. It's a sharp, deep pain and so overwhelming. I couldn't sigh or relax muscles, even if I wanted to. I'm so tense with hurt, fear, and anxiety that my breath comes and goes in shallow and quick bursts. Pain. It feels like my body is literally trying to push it off of me. Like a thick heavy blanket. But I feel it deep in my bones. And then I remember that it is deep and in my bones. I remember how severe bone pain is rated on the pain scale and it comforts me, knowing I'm fighting one of the worst pains the human body can physically go though, on a daily basis. 
It reminds me how tough I am. 

But nevertheless, I pop in another half of a pain pill, because the truth is I'm starving and the only way I can make myself a PB&J is if I get up, which I don't think I can. 
This time I struggle harder to pull myself out of bed and I wince loudly with each micro movement. 
I instantly wish I had my walker. It was so much easier to deal with hip pain then, having the ability to take my body's weight off of my hips and onto my arms when my hips couldn't take anymore. I struggle to walk the 12 paces to my kitchen when I get halfway there I suddenly and seriously consider turning back to bed instead. This is too hard. It hurts to much. I need to sit, lay down, anything. I don't want to be away from my ice pack or my hot pack. 
But I get there and toast my bread -the seconds seemingly ticking away hours- and grab the peanut butter and jelly, hoping this small prep will get me back to bed faster. It's gotten so much worse in the last couple hours and I wonder why the prednisone isn't helping. 

It's then I remember Dr. Weitz' words from just the day before. 
"If prednisone helps, it's inflammation causing the pain. If it doesn't, it's joint damage." 
And I practically drop my peanut butter filled knife onto the floor. 
Now I'm really scared. 

Something I think most of us fail to mention is how scary pain can be.
The fear that the pain is causing joint destruction--
that soon you'll be immobile, permanently disabled.... is petrifying.  
My intention with this post is to raise more awareness about the fear of pain and disability
in the hopes of combating that fear, together.
Fear of the unknown is something we all face, but I know sticking together 
will make the journey that much easier. ;)