Rheumatoid Arthritis: #RASucks

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I dropped the tiny screw for what must have been the fifteenth time. Instead of trying to fumble with my stiff, thick fingers to pick it back up and start the process all over again, I simply stared at it. For nearly twenty minutes I’d been trying to thread a tiny screw into the hole in the drawer rail and attach it to the side of the drawer. This would complete the assembly of the first of six drawers that would eventually go in my new dresser. Sweat was beading on my forehead and my hands had started to shake.

I knew I was fighting a losing battle…..I just didn’t want to admit it.

Putting together a dresser, even a dresser from Ikea, is not supposed to be a four and a half hour project. But there I was, exhausted, sitting on the floor with a nearly completed drawer in my lap, rubbing the fingers on my right hand. And there were still five more drawers left to assemble. After about ten minutes of massaging my fingers and trying to get them back to working order, I finally had to set my tools aside and quit for the day. It bothered me a lot to leave the dresser unfinished. I’ll be the first to admit that I am one of the world’s great procrastinators and it may take me weeks or months to begin a job if I’m not excited about getting it done. But once I start something, whatever that something is I will put everything I have into finishing it.

That dresser was the first thing I had to leave unfinished thanks to my rheumatoid arthritis, and it bothered me a lot more than I was expecting.

I was diagnosed with rheumatoid arthritis a little more than a week ago, and I think it has taken a while for that diagnosis to really sink in. On the one hand, the diagnosis is somewhat of a relief. For years I have been coping with joint pain that, at times, is so intense it’s difficult to talk or think beyond the waves of blinding, throbbing pain. I have been to multiple doctors over that near ten year period with little to no results. Some of the doctors I’ve seen were convinced that I had somehow injured myself without realizing it and without any X-ray evidence to back up their diagnosis. Their solution was to prescribe an anti-inflammatory and maybe a narcotic for the pain. Others didn’t even go that far.

One of the most disheartening and infuriating things I’ve ever experienced was the treatment I received at the hands of some of the doctors I’ve seen over the years. They were dismissive, callous, and at times, accusatory. I was told more than once that I was exhibiting drug seeking behaviors, basically calling me a liar and a narcotics addict. I was told that the pain I was feeling was emotional or psychosomatic, which also amounts to fabrication of the pain albeit due to some underlying psychological disorder. And my least favorite of all, the doctor who literally told me to my face that I was not feeling any pain at all because there was no sign of trauma on an x-ray or MRI. When you’re told something like that enough times, from people in a position of authority who are supposed to know more than you do, it gets tougher and tougher not to believe them. Over the past ten years I have come to doubt my stability, sanity, and even the pain itself thanks to the questioning and suspicion I’ve faced from doctors.

So, as daunting as a diagnosis of RA is, at least I know now that the pain I’m feeling is not only real, but it is the result of an actual diagnosable illness. Still, I’m left with the lingering question “what if?”  What if, at any point in the last ten years, one of the doctors I went to had been a little more compassionate and a little less dismissive? What if one of those doctors had decided to look beyond the superficial for a root cause of my pain? What if they had taken the time to draw a few vials of blood and run the necessary tests to check for things like Lupus, gout, or RA?  How many days and nights over the past ten years did I spend in unnecessary pain?

Those questions don’t really matter now, though. Even if I had answers to them, those answers wouldn’t make my toes less swollen, they wouldn’t make my fingers less stiff, and they wouldn’t help me find a path forward to treat my arthritis. And that’s where my focus has to be at this point…. Finding a path forward to treat this condition, manage the pain, and get back to living the active life that I have allowed to slip through my fingers for far too long. At 34, I’m too young to have arthritis standing in my way, and I refuse to allow RA to rule my life.

The reason I’m writing this today is to send a message to anyone out there in the same situation I was in two weeks ago who may come across this post. It’s for the people who are in real, definite, tangible pain, but can’t seem to find any relief or any cause for what they’re going through. I know how frightening and depressing it can be to go through pain that you can’t really define or describe, yet you know it’s there. I know what it’s like to have doctors, friends, or family look at you with questioning eyes and doubt written across their faces. I have been right there where you are now, and you are NOT alone. If you need to talk to someone who knows that it feels like to have that kind of pain, don’t hesitate to find me on Twitter or Facebook and send me a message, or you can drop a comment on this post.

Don’t give up and don’t stop pushing to try and find some reason, some explanation for why you’re hurting. And, if your doctor is dismissive of your symptoms or belittling of you as a person and a patient, then find a different doctor. Find one that will listen and will move heaven and earth to ferret out what is causing your pain. You deserve a doctor who will care enough to try and help even when the answer is not staring them in the face.

I’m going for my first appointment with a specialist today to start discussing long-term treatment plans and pain management strategies. While I’m not sure what all that will entail, I do feel like this is the first step forward toward a future where I’m not in constant agony in more than ten years. It feels good to finally see a light at the end of this tunnel.

And whatever happens, when I get home I’m going to finish putting together that dresser for my wife.

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2 thoughts on “Rheumatoid Arthritis: #RASucks

  1. That is crazy! 10 years before a diagnose. My girlfriend was very fortunate. She’s been suffering for 3 weeks, and the blood test immediately ID’d that she has RA. Waiting now to see what type of drug regiment she is going on.

    Liked by 1 person

    • I hate that your girlfriend is going through that, but I’m glad they were able to pinpoint the cause quickly. Hopefully they’ll be able to get her on a treatment plan that will work well.

      My problem is that all of the tests for genetic RA have come up negative. I have no family history either, so the doc’s are all puzzled as to just what is causing my RA to flare up and give me such problems.

      And I agree, 10 years is a LOOONNNGGG time to wait for a diagnosis. Part of the problem is this all started when I was so young that no one was really looking at any kind of arthritis as a cause.

      I’m just thankful that I finally have some answers and that hopefully things will get straightened out. My next appointment with a rheumatologist isn’t until February, so I’m just in pain management mode until then.

      Hope things get better for your girlfriend, and let her know she’s in my prayers.

      DWM

      Like

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