10 Years Living with RA

It’s funny. The only thing I remember about the moment my doctor told me I had rheumatoid arthritis was the baffled look on her face when I had no reaction to the terrible news.

“Oh, okay,” I said nonchalantly. Then I got lost in my own thoughts. My grandma on my dad’s side had rheumatoid arthritis and her feet were a mangled mess. When I was a kid, she always wore thin slippers so she could slide around on the wood floors in her kitchen. She always made burnt popcorn. I thought because she also had diabetes you were supposed to burn popcorn for health reasons but, yeah, no. I found out later she just liked burnt popcorn. Now that was baffling…

“You’re going to have to see a specialist,” my doc said, snapping me back to reality.

“Oh, okay.”

I don’t remember anything else. I didn’t ask anything and I went on my way totally oblivious that I had a chronic, possibly life-threatening disease.

Ten years later, now when I’m at a doctor’s appointment, I pay close attention. I take notes. I interrogate my rheumatologist, or any of the other random specialists I have to see, and don’t stop until I get detailed answers.

Being more present during a doc appointment, not being scared to ask questions, those are just one of many things I’ve learned as an RA patient over the last decade. Ten years with RA is an inauspicious anniversary, not supposed to be celebrated with cake (but don’t mind if I do) or alcohol (maybe just a wee). Perhaps it is cause for some celebration? Back in the day, when I Googled my new disease, the first thing I read was that one-third of RA patients die within the first ten years of diagnosis. Then I broke down and cried.

It took me awhile to learn how to weed out what was legit medical research on the Internet and understand how to decipher research and studies. Turns out, flash forward, I’m not dead yet, I’m actually doing fine, knock on wood. Yes I have flares of pain that would bring Hercules to his knees, and weird aches and pains and herniated discs that seem to come outta nowhere. It’s true that my right foot barely works and my right hand is useless and I get so itchy I want to peel my skin off like a potato. And some days I’m so puffy and bloated from pills that I look like Mr. Potato Head.

It’s been a tough pill to swallow to admit that RA has ruined a lot of things in my life. My stunning good looks, at least one romantic relationship, my metabolism, my controlling personality, vacations or hikes that require more than exactly one hour and 15 minutes of walking per day. Concerts. Festivals. Parties. I’m not even 50, but if I have to stand for a long time I’m not going. And being on methotrexate, I can’t really get hammered anymore. My liver can’t handle it. With the state of the world these days, the escape of getting blackout drunk would be so lovely! But that’s not an option anymore. Hence, the cake.

The Silver Lining of RA

Even though I would consider a deal with the devil not to have RA, and wouldn’t wish it on my worst enemy, my diagnosis has changed me in some crucial, very positive ways. I’m taking better care of myself — physically and emotionally — having learned the hard way what might have caused it (perhaps my pack-a-day cigarette habit for 20 years?) and my current flares (perhaps sugar and gluten?). I’m in better relationships, both romantically and platonically. My current girlfriend doesn’t get mad when I’m in pain and can’t do fun things. Without asking, she rubs my aching feet.

I’ve made a lot of new friends, many of them online or much older. You know why? Because they let me talk about my aching joints 24/7 ad nauseum. They live for this shit! I can sit and talk about my herniated disc with my new best pal Mary, who is 72, for hours and she can tell me all about her GERD. Then she makes me lunch and we go swimming in her pool. It’s a beautiful friendship.

I’ve learned that most people my age really don’t want to hear about my RA or talk about illnesses in general. I don’t blame them, I guess. If they’re doing well health-wise, it’s like they don’t want to jinx themselves or something. I get it. Don’t deal with this garbage until you absolutely have to. Until my dad got cancer and passed away eight agonizing months later, I honestly don’t think I was very empathetic. Now I’m like “FUCK CANCER!” any chance I get.

I’ve learned so many logistical things after dealing with RA for 10 years. Like:

  • Making sure I pick a rheumatologist with a friendly, competent front office, no matter how far I have to travel.
  • Paying a premium for the best insurance (if I can afford it) because it’s totally worth it.
  • That CBD oil works for me for like 10 minutes on me then nada.
  • That my hair isn’t going to fall out from MTX.
  • To tell my rheumy about every problem I’m having, whether I think it’s relevant or not.
  • That flares can come from stress, fatigue, infection, food, or for no damn reason at all.
  • No matter how bad the pain gets, I will avoid taking an opioid for as long as humanly possible.
  • Not to forget my phone charger when I go to my three-hour Remicade infusion.
  • Not to take medical advice from strangers who are not doctors and to not punch them in the face when they tell me to take turmeric for my arthritis. Let it roll off my shoulders, ohhhmmmmmm.
  • Oh and that I can only wear Adidas and will only wear Adidas, even to your wedding. Sorry-not-sorry!

The Most Important Lesson About RA

But the most important thing I’ve learned after living with RA for 10 years is that a healthy body is a gift. I may not die tomorrow from RA but I could be crippled sooner than later. It’s a crapshoot. I don’t know when that is going to happen, if ever. I can quit smoking and eat great and move as much as possible and take all my medicine in the proper way. But the truth is, some of this is out of my control.

Knowing that, I try to truly appreciate the good days and push myself to live my best life. I do what I can, and when I can’t, I adapt and adjust. The most important thing I’ve learned is that I have to be open to my life changing on a dime. One day I can hike Joshua Tree, the next day I can’t. So what can I do now instead? Then I do it.

I don’t hold back because I don’t know if I can. I assume I can until I can’t. I make plans, I book trips, I go to the gym, I live as normal of a life as possible. And surround myself with people who are willing to change quickly with me.

Every time something bad happens with my RA and there’s yet another thing I can’t do anymore, I picture Ross from Friends screaming “PIVOT! PIVOT!” It’s a classic TV moment and kind of a great mantra to have if you’re living with a chronic illness.

Having RA stinks but your life with RA doesn’t have to. Keep on keepin’ on and cheers to at least another 10 years! Let’s break out the Nosecco and burnt popcorn!

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