The truth is I thought I had come to terms with being diagnosed with an incurable, progressively disfiguring disease a long time ago. I considered my RA and I off the Ferris Wheel of denial, anger, bargaining and sadness. I had moved on to acceptance!
In a wheelchair, out of a wheelchair.
With a cane, without a cane.
Working a job, and “disabled.”
I had learned to love myself and appreciate all the facets of ME with RA on the side. The good and the bad, my RA and me had a ying and yang. YAY!
Then I became a mother.
And a newfound hatred of this piece of crap disease began brewing inside me before I even had time to recognize it or nip it in the bud. Now, it’s bubbling to the surface in surprising tears I can’t hold back.
I was warned of the postpartum RA flare, told to prepare my support system, told to come up with a treatment plan with my doctor. And I did!
I did all of that, but the one thing I forgot to do was to prepare myself.
For the disconnection between my love and longing to hold my son and my stiff elbows and painful shoulders that won’t cooperate.
I forgot to forgive myself for not being a “perfect” mother and to ask my friends and family to remind me when I forget that there is no such thing…
I forgot to tell myself that people lie on Social Media.
That commercials that say “Moms don’t take sick days” are just Marketing to sell NyQuil, not truths.
And everyone has bad days, even moms without RA.
The truth is I’m still learning. I don’t have it all figured out. With every milestone I experience and every new obstacle I face, and every year that passes with this lifelong disease *eye roll..* I come closer to finding the reason I’ve been given this rather distasteful set of cards.
This was the beginning of a post Joe was writing for The Young Face of Arthritis, before his passing on August 30, 2019.
Joe was diagnosed at four years old with juvenile arthritis and though he wasn’t “young anymore” (as he put it), I felt Joe’s wisdom and raw, inspiring thoughts fully compassed what The Young Face of Arthritis means to me.
When I created this blog, I did so to talk about the emotional side effects to being young, disabled, and fabulous (as I call it..)! And Joe’s thoughts often inspired me to show more and explain more deeply how chronic pain not only affected my body, but my mind and soul as well.
You will be missed, my friend. Thank you for being so raw and open and sharing in my fears, hopes, questions, and desires for the future. And thank you for letting me share your legacy of finding purpose in a life with pain with our community.
It’s been 4 days and a part of me hasn’t fully accepted that my immune system doesn’t want to cooperate with any of the Biologic medications I’ve already tried.
Enbrel, Remicade, Actemra, Orencia, Cimzia, and now Olumiant.
Don’t get me wrong, I’m extremely grateful that I have these choices. That they’re even available to me. When I was diagnosed in 1996, deformities were rampant and Biologics didn’t exist. We had to make do on anti-inflammatories (NSAIDs). Now, when my immune system outsmarts a drug, I get to move on to the next one.
As grateful as I am, however, the truth is, there is still some small part of me that thinks, “but.. why??”
Why can’t they just work and let me be? What did I do wrong? What’s wrong with me?
I know in my head that it isn’t my fault, but it’s kinda hard not to take it personal when five drugs don’t want to work on me–or work for a while and then stop working all of a sudden.
It reminds me of when I started this journey in 2010 with my first Biologic medication and SO much hope. I thought I would be like the people you hear about that have been going strong on the same drug for 10 years.
Every time I would switch to a new medicine, I’d make all kinds of life plans banking on this being “The One.” Then, just like a young girl falling for all the wrong guys, I’d end up shocked and heartbroken.
And here I am again, except I’m shocked and heartbroken with myself. With my body, for betraying me.
It’s a lot to overcome. I love my body for the good things it’s given me: only 1 joint deformity requiring surgery in 23 years and my most precious gem, my son. But I’m also irritated at the lack of cooperation on my immune system’s part.
How do you know when your RA is out of control? Where do you draw the line between what is “normal” for someone with a chronic, progressive inflammatory (read: painful) disease and what requires intervention? Is it personal tolerance to the current existing pain? Is it the emotions towards current existing pain? Is it the number of flare-ups in a week? A month? Or is it the amount of pain pills required to manage current lifestyle?
At what point am I kidding myself trying to live like a person without RA? At what point do I get fed up and call my doctor?
How much pain is ACCEPTABLE?
A couple months ago I did a Vectra test.* If you’re unaware, a Vectra measures RA disease activity using 12 biomarkers that are linked with inflammation and scores it between 1 and 100.
When I took Vectra, I knew I wasn’t doing well, but I didn’t actually expect my Vectra score to be that high. My pain had been increasingly unbearable with Tylenol, my ability to fall asleep and stay asleep had become hit-or-miss, and getting out of bed in the morning due to the morning stiffness was becoming slow again and very painful.
But even that wasn’t enough to shake me into calling my doctor and requesting some of the more serious drugs like methotrexate or prednisone. These symptoms joint pain, stiffness, swollen “frozen” joints,fatigue, etc. are ones I’d come to accept given my RA diagnosis. I know I have to live with some level of pain given I’ve had RA for 22 years now. Surprisingly, my ability to tolerate pain has increased over the years, even as my emotions towards my pain has waxed and waned. All these things, I don’t count on to tell me whether my RA is under control or not. And it wasn’t until yesterday, while answering interview questions, that I realized it’s a lot simpler to me than that.
“How do you know when your RA is not under control?”
When my pain affects my ability to take care of me. I’m not shooting for the stars here. Call me stubborn, but pain isn’t enough for me to say my RA is out of control. I know that having RA means bad days and I know it means giving up road trips and hours walking at the zoo. That’s what annual passes are for, so I can enjoy the zoo in short bursts and not get down on myself for not being able to do it all in one day. It is also why I choose not to trust my emotions and why I won’t change treatments just because I feel angry or frustrated at my pain.
I know my RA is out of control when I’m choosing leggings over pants with a button and a zipper. When I’m sitting down to brush my teeth because my knees hurt too much to stand in front of the sink for two minutes and when I haven’t brushed my hair in days because my fingers are too swollen to wrap around a brush handle.
Even then, my knee-jerk reaction is to assume I can deal with the symptoms, out of sheer willpower. It isn’t easy to switch biologics and every time it’s an emotional blow because I want the meds to work so badly, even when my body is clearly telling me, “NO.” It’s times like these I’m grateful to have a Vectra score not only to back me up, but to also kick me in the butt when I’m in denial about my fifth biologic.
As easy as it is to get frustrated with this disease and feel desperate for relief, the motivation to continue fighting against progression or stagnation is somehow equally difficult. I don’t have all the answers. I do believe the decision to change meds has to be a personal one, but I am grateful to have tools like Vectra to help me make that decision.
As for me, I’m pressing on for now, even with my high disease activity and even as I slowly deteriorate for the comfort of knowing I gave my fifth biologic a fighting chance against my immune system.
*Post contains affiliate links. Views are my own and not a reflection of Crescendo Bioscience, Inc. or it’s parent company, Myriad Genetics. This post is not an advertisement and reflects my personal journey and the benefit I’ve had from taking a Vectra test.
People ask why at 27 I don’t drive long distances, the truth is that positions that keep me still for long periods (hands on a steering wheel, knees bent, foot extended) hurt me very much. I NEED to shift, move, turn, get up, etc. And that’s a daily thing. When I don’t do these things (or can’t because I’m behind the wheel) the pain of not doing them makes me desperate, and since I can’t take anything for pain—it also makes me reckless. Virtually every accident I’ve been in has been caused either because I was in too much pain and desperate to get home or too fatigued and falling asleep behind the wheel. I’ve had to pull over to take a nap more times than I can count. And that’s just from local traffic.
Today I remembered why driving long distances isn’t just risky, but impossible for me… at the present moment.
I was halfway packed ready to go to Orlando when I woke up barely able to pick up my son because my elbows were so stiff. Luckily, his crib is right next to my bed so I tossed him into my bed and laid down next to him. I rested with him for a long time. My RA keeping me in bed and my stubbornness mentally planning what outfits to pack for the weekend. In my mind, I’m thinking, “if the pain and stiffness in one elbow eases up a bit, I can still make the trip with one hand on the wheel.”
I don’t know where I’d be if I didn’t have people to tell me I’m insane. Probably dead in a ditch somewhere by now, because by tonight I couldn’t even carry my laptop and every sip of water I was thinking, “is this crucial to my survival..?” I even skipped dinner so I wouldn’t have to bring food up to my mouth.
Years ago, when my day job moved 40 miles away (1 hour+ in South Florida) I made the difficult decision to take the severance package out of fear I’d end up stranded somewhere and not able to drive myself home. If this had happened at the end of the weekend instead of the beginning, I’d be stuck until the flare up passed.
So if I cancel last minute, ask for a ride, refuse to RSVP, please forgive me. It’s not me driving, it’s my RA behind the wheel.