This year I was privileged with the opportunity to attend the American College of Rheumatology Annual Meeting in DC with The International Foundation of Autoimmune Arthritis. For 3 days, we Facebook Live’d interviews with researchers and non-profits. It was pretty awesome (check out all 20+ videos here!)
We’re here in DC for the next few days interviewing researchers, foundations and non-profits with The International Foundation Of Autoimmune Arthritis. Make sure to follow @ifaarthritis’s Facebook page to see all the Live interviews AND comment with your questions!!
See this Instagram photo by @itsjustabaddaynotlife * 102 likes
Over those 3 days, I heard about great research occurring in the rheumatological space. But the biggest thing I walked away with was personal.
As I was there, I saw pharma booths with graphics of what autoimmune arthritis looks like.
I saw patients as living proof of what the disease looks like.
And I kept thinking about myself and how my disease manifests.
Yes, I realize this was selfish, as I was there to help disseminate knowledge to other patients. But, honestly, I couldn’t stop thinking about myself.
Up until this year, my hands haven’t been a huge problem for me. I had occasional wrist problems throughout the years, but I never considered having a problem with my hands. In fact, most people only believe I have a knee problem. And, to a certain extent, I guess I started believing the majority of my problems only resided with my knee as well.
But let me tell you. The last 8 months have drastically changed that.
Numb fingers and forearms, pain starting in my thumbs and shooting up to my shoulders, swollen finger joints. . . these have started to become the norm for me.
I don’t quite understand why either. Sure, I started back to work this year, BUT I’ve been blogging for the past 3 years. I was usually on my phone, ipad or computer the majority of the day before. What has the difference been?
As this year has progressed, I’ve had to pay more and more attention to my hands. Most recently, buying compression gloves to start to wear to help the pain.
In my mind, I keep telling myself this is temporary. This isn’t going to be for forever. I’m just learning how to manage and once I figure out the triggers, this pain, numbness and tingling will be gone.
But that ACR weekend made me ask the question I’ve been dreading . . .
Will it really ever go away?
Will I ever be able to manage it completely?
Will I be able to get back to writing in a journal without having my hands cramp up?
Sure, I can’t lie and say I have NEVER had that thought before. BUT, this weekend did bring up a topic regarding my hands that I HAD NOT thought of before.
During the ACR, I saw picture after pictures of what “arthritis hands” look like.
I heard what doctors were to look out for as symptoms of arthritis.
I spent time with patients who compared what arthritis had done to their hands.
Looking down at my own hands, I realized I was lucky.
I have no signs of problems with my hands. Sure, my middle finger is crooked, but it’s always been like that. That’s just the way my finger is.
They occasionally swell, and most recently my right middle finger will look a little funny. . . but other than that, most days they look like normal 31-year-old hands.
But . . . am I eventually going to end up with “arthritis hands”?
The “sausage digits” so commonly seen in psoriatic arthritis patients, the breakdown of finger joints, the ankylosing of finger bones. Is this going to happen to me?
Up til this point, I’ve only ever thought of my knee in terms of normalcy.
When I was in my teens, my doctors used to joke about how I’d probably need a knee replacement by the time I was 30. In the back of my mind, I’ve always been worried about my knee. I never really took time to think about what would happen with my hands.
Uncle Ben Hands
I had a great uncle who had arthritis. I’ve never been told his official diagnosis (I can only suspect it was RA or PsA). His knuckles were enormous and he always wore gloves. When I was little, my parents would tell my sister and I not to crack our knuckles or else we’d end up with Uncle Ben hands. The thought would terrify us both.
These few days at the ACR brought back images of Uncle Ben’s hands.
No offense to my late Uncle Ben, but I don’t want the hands he had when he was here on earth.
When you’re 31, you find yourself at many baby showers.
A few months ago, I went to my friend’s baby shower and wasn’t having the best day. (She’s since had a beautiful, healthy baby boy. He’s adorable. Seriously.)
As I sat there, watching her open up presents, I leaned over to my mom and teared up. Thinking about opening all those presents made me want to cry. Not because they were so cute, but because with the way my hands had been feeling that day, there was no way I could have physically opened up all the gifts.
In November, one of my best friends had a baby shower. That day, her Mom asked my friend and I to help with presents. I was more than happy to do so, but when she asked if we could write down the gifts, that’s where I froze. Yes, I wanted to help in any way I could, but I knew I couldn’t write down all the gifts that she would open. My poor journal has seen no love from me this year because I can’t write! After a few sentences, my hands cramp up and I just can’t do it.
I’m 31. I want to be able to write in my journal or type on my laptop or write down gifts for my friend at her baby shower – and not have to worry about over doing it.
I’m feeling very emotional about this right now because I usually feel like I have things in control. I’m a very cause and effect person. Something always causes something.
And I’ve been having an extremely hard time figuring out what’s causing my hands to bother me this past 8 months. Yes, carrots and apples seem to flare them up tremendously – hence, I avoid them. But other than that, the only thing I can boil it down to is stress and using my phone more than 10 minutes at a time.
So, long story short. I’m scared.
I’m doing everything that I can do right now to prevent it. . . but what if I end up with arthritis hands?
What if I end up having hands like Uncle Ben? (Something that I was afraid of when I was younger.)
What if everything I’m doing isn’t enough to prevent it?
At the end of the day, I’m scared because I don’t know what will happen.
But that could be said for everything in life. No one knows what will happen.
We could (and I’m sure a lot of us DO) drive ourselves NUTS worrying about what might happen.
All we can do is to try our best and have faith and hope.
I’ll continue my hand exercises, I’ll continue making modifications to help support a health body, and I’ll continue to make the most of every moment.
Only God knows what will end up happening to me and my hands.
And, truthfully, I need to work on accepting that.
Wishing You A Pain Free Day,