Have you ever seen The NeverEnding Story? I saw it at the theater as a child with my Grandma (who turns 79 today – love you Grandma, happy birthday!); it’s been one of my favorite kid movies ever since. It’s also a great place to start my blog today, since after yesterdays rheumy visit I feel like this whole thing is a never ending story.
Very often this chronic journey feels like a trip through the Swamp of Sorrows. Most days I’m Atreyu, fighting desperately to overcome the fear, discomfort, and gloom of the chronic pain swamps. Like him, I am determined, steadfast, and successful. Once in a while though I’m Artax; I have a brief relapse into the apparent futility of it all and just want to toss my hands up in the air and sink into the swamp. Yesterday, for a short while, it was an Artax day.
I went into my rheumy’s office for a six week follow up with a sense of trepidation. My recent cocktail of meds (weekly Humira shots, Methotrexate, and daily Prednisone doses w/ a Tramadol or two on top) did not seem to be working very well. My hands and feet have been the worst; I don’t even like looking at a pair of shoes, because it hurts to wear them – and my hands have been aching to the point it’s hard to do anything like cracking an ice tray or opening a jar or pill bottle. When the nurse took my pulse it hurt when she squeezed my wrist lightly. I was in fact in more pain over the last several weeks then I had been in some time, and I was afraid of what a new medical arsenal might entail. I’ve made my way through all the DMARDs, so I feared a switch on the biologics, or even a move to infusions over injections. The Humira has helped, and I don’t have any bad reaction to it – which is more than I could say for most of the DMARDs I was on. At any rate, I am certainly well past exhausted of the prescription merry-go-round, and working hard to not be completely discouraged.
My rheumy (now dubbed Dr. M) came in and sat down and began feeling the joints in my hands, asking me how I’d been. He mentioned Dr. L (my psychologist for pain management) had called him and told him I was less than honest about my pain levels. I knew she was going to call him, and appreciated it; I have a very hard time admitting to pain, and have a tendency to downplay it more often than not. I realize that’s counterproductive most of the time, but it’s the whole ‘whining’ issue I have going on, and not wanting to seem like that’s what I’m doing. I’m working on it.
Dr. M looked over my joints, and after examination he said, “Well, your numbers are actually looking really good. There’s also little to no swelling in your synovial lining. We don’t want you in pain, but I don’t think the pain you’re having now is related to the rheumatoid arthritis.”
I might as well have been slapped in the face, because it would have been less of a shock. What does he mean it’s not from the RA? It has to be from the RA, THAT’S WHAT IS WRONG WITH ME.
He said he wanted to check some other points, and squeezed my shoulders, shoulder blade area, and upper arms. Each squeeze felt like a vice and made me ache. He sat back down and said, “I think the pain you are having now is some type of myalgia.”
It was all I could do not to break down and cry right there. Oddly enough I was pretty focused on the fact it wasn’t my RA then the thought I had another issue. The idea that it wasn’t my RA for some reason just really rocked my world. I’ve been having all this pain, practically constantly, for almost 2 years now. But the pain had a name, and I had been working SO hard to do what I could to address the problem. I’d gone through medicine after medicine, some of which were pretty devastating in their own right. I’d attended classes, reached out to others, educated myself in what was happening and what to expect. I’d accepted some horrific possibilities inherent to my condition. After all that work, how could this pain not be my RA?
Dr. M said he was going to up my Methotrexate slightly. He also is sending me to some uber-rheumatologist for a second opinion. Fortunately for me one of the top rheumy’s in the country (so I’m told) actually lives and practices quite close to where I live. Dr. M said when he has patients who don’t seem to respond well pain-wise to treatment with all the traditional meds he sends them to uber-rheumy. He also added a new drug to the arsenal, Savella, which he said may help with the ‘myalgia’ pain. He never came out and said the F word, and maybe that’s not the case; but if the pain isn’t my RA, something else is very, very wrong.
After my appointment I sat in my car in the parking garage and cried. I thought of my blog, and my commitment to myself of staying positive, and all I could think was how I did not have the strength to find the positive at that moment. I texted my boyfriend and my best friend the news, and started to drive home.
The thing about lemonade is, sometimes, you need someone to squeeze the lemons for you.
Once I arrived home, I cleaned up around the house a little. I chatted on the phone with my best friend Nicole (who called me repeatedly through the day to prop me up, as well as to chastise me for not letting myself break down some and release my disappointment), busted out a bottle of deep burgundy red nail polish (All Nighter was the name of the shade, woo hoo!), and popped in Beetle Juice in a feeble attempt to keep from collapsing in despair. And then my Viking saved the day.
My Viking is my boyfriend, Alan. In my life full of lemons (dating back well before my RA), Alan is my lemonade. He’s half Danish, 6’3″, with long red hair, a beard and mustache, and all he needs is the little moose helmet and a pitchfork to complete the look. Back off ladies, he’s all mine. I’ll have to tell the story of how we met sometime, since it’s a great story – but another time.
So I’m sitting there painting my nails, watching some of Tim Burton’s best work, when my phone dings with a text. Alan was comforting me, giving me the hang in there talk, reminding me we will get through this, day by day. And there it was – the lemonade.
Don’t give up hope baby. I know it’s tough and it seems never ending, but take heart that the numbers look good and that would mean no disfiguration in the future.
How could I have missed that? Yes, I still have a lot of pain. No, the merry-go-round is not over. But I have very little swelling in my synovial lining. My RA is as close to under control as it ever has been, and that means less RA pain, and less chance of the devastating effects uncontrolled RA can have on my body, including the crippling of my joints. Despite the fact that I still hurt, that is a major victory of sorts; one that I couldn’t see through my shock and upset.
If you don’t have a Viking, I highly recommend picking one up.
Thank you God for Alan and lemonade.