Managing A.S., Reflections

I’m a Thursday Girl, or … It’s Enbrel Day!

Thursday, August 24, 7:30am

I’m awake. I’m in pain. It takes a few minutes for my brain to get going, but when it does, I realize, today is the day. After two months of preparation, this afternoon I will have my first shot of Enbrel.

The last time I updated this blog, it was in the midst of preparation. Vaccines, x-rays, blood tests, TB tests… You name it. Soon after, on August 1st, I confirmed with my rheumatologist that all was in order, and we began the process of applying for Enbrel.

That very afternoon, as I sat at my desk at my office, my cell phone rang. It was my Enliven support manager, Alice, calling to introduce herself and to get the information she needed to apply to my insurance to have the medication covered. Together, we called my insurance and I added her as an authorized person to discuss my file, and confirmed that, indeed, once the pre-authorization was completed, Enbrel would be covered under my plan. Then, we reviewed the information my insurance company would need.

It was funny: as we went through my history, I remembered long-forgotten episodes where doctors had prescribed me painkillers or NSAIDs for my hip. A feeling of relief that perhaps we’d finally found a medication that will help began to wash over me.

Alice sent me the forms for me to sign, I scanned them back to her, and away to my insurance company they went. And thus, the wait began.

 

Thursday August 24, 10:30am

I have just taken the Enbrel SureClick injector out of the fridge and left it sitting on the counter to come to room temperature. It’s starting to feel real: today is the day. I feel the adrenaline begin to surge. There’s so much hinging on this. Will it work? Will I feel better? Actually, wait a minute — what does better even feel like?

I don’t have time to dwell on it though… I have to be downtown for a meeting in half an hour. So, out the door and into my waiting Uber I go.

 

Thursday August 24, 1:30pm

I’m standing and waiting at my front door for my Enliven support nurse, Linda, to arrive. It’s starting to feel impossible to distract myself from the anxiety I feel. As ready as I am, I’m scared. I do not question my decision to begin biologics, but there’s no denying that today is a turning point in dealing with living with ankylosing spondylitis.

Throughout the process of waiting for approval from my insurance company, I experienced varying levels of anxiety. Many nights I was awoken by dreams that were very clearly my subconscious acting out the things I was scared of. In one dream, the injection hurt so much that I sobbed, and wasn’t sure how I would ever give myself the needle again. In another, my insurance company turned down the pre-authorization request and demanded that I try yet another NSAID before they would approve biologics. In yet another, Enbrel didn’t work after three months so we tried Humira…. Then Humira didn’t work, so we tried Cimzia… and on and on and on until we ran out of drugs to try.

I think of the injector sitting waiting upstairs, and I try to bring my focus to my breath to stave off the impending anxiety attack. Just then, Linda arrives.

 

Thursday August 24, 3:00pm

Well, it’s done. My first dose of Enbrel.

Linda was an excellent coach. Together, we sat in my living room as she taught me how to safely and correctly administer the injection. From how the medication functions, to what side effects to expect… from how to prepare myself for the injection, both in terms of physical space and cleanliness, to how to hold the injector, Linda walked me through it all.

We practice together with a demo (needle-free) injector, and once Linda determines that my technique was fine, we proceed to the “real deal”.

Linda has me say the steps out loud as I complete them, and gently reminds me if I stumble. I pick up the injector and check the expiry date. It’s in 2019 — Linda tells me that means I have a fresh batch. I lift up the injector to the light to look at the mediation through the window. It is clear. The injection is good to go. I take a deep breath.

I choose my stomach for the first shot, and swab the area with an alcohol pad. I pull the skin taut and press the injector against it until I hear it click. It’s ready. But am I? There’s no going back now. I press the trigger and the injection begins. Linda and I count to 15. I feel the fluid under my skin. It’s really happening.

 

Thursday August 24, 6:00pm

I’m back at the office. I have been for a few hours now. My stomach is still stinging, but other than that, the memory of having jabbed myself with a needle has faded. My head is sore, and I feel kind of… off… but nothing too crazy has happened yet. I’m not sure what I was expecting, but so far I feel okay.

 

Thursday August 24, 8:00pm

Something has happened. The swelling in my fingers has gone down so quickly. Waiting for my Frappuccino at Starbucks, I notice that my ring that hasn’t fit onto my middle finger in two years slides on just fine. Is that even possible? Can the swelling be subsiding so quickly? I slide my ring up and down a few times to see if maybe I’m dreaming. I switch it to my other hand and back. It fits. No matter what I do, it still fits.

It feels miraculous. It’s such a tiny thing, but it feels so significant. Somehow it’s fitting that the symptom that was what led me to the doctor last summer is the first to ease off with the new medication. I look down at my toes, and they look almost back to “normal” also. Maybe it’s going to work?

 

I’m a “Thursday Girl”.

These were Linda’s parting words to me as she headed out my door. Thursday is now Enbrel day. I wonder what the future has to hold as this medication kicks in. Will I be the Energizer bunny that I used to be? Will I sleep through the night without back pain again? Will I be able to pop out of bed in the mornings, refreshed and ready to go?

I almost feel anxious about what feeling better might mean. It’s so easy to get used to feeling exhausted and in pain constantly — and indeed, you have to get used to it in order to cope. But what happens when there’s a chance that you might feel “back to normal”? I lean into this question, absorbing the fact that it actually scares me a little bit. Living with chronic illness is precarious. Feeling unwell feels intolerable, but at the same time, feeling well feels unsustainable. But this forces you to establish some sort of fine balance…

But what happens when that balance gets thrown? What pain is there for good, the result of faulty mechanics from fused joints, and what pain will subside as the medication reaches full effectiveness? What will my energy levels look like?

I don’t know any of the answers, but I am ready to find out!

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