Battling Chronic Illness

I have known that this day was coming for the past five months. Treatment started today. Last October I was diagnosed with Ankylosing Spondylitis and at that first appointment with the rheumatologist, she let me know the recommended treatment is biologics. I was not keen on this treatment as it meant that I’d have to inject myself weekly. I had attributed my pain to being rear-ended three times and had hopes of it going away. While the motor vehicle accidents contributed to the pain and flares, a diagnosis of an autoimmune disease meant this pain was here to stay.

As the months passed, I consulted each member of my health team and I gained more information about this type of medication. There were long conversations with my husband about the pros and cons of starting treatment. Knowing that I would only have to commit to three months of trying biologics helped us make the decision to move forward. If it works, I could be on it for life, but the goal is to “treat it aggressively” to quote my doctor, with hopes that I can achieve remission.

February marked 13 years of suffering with chronic back pain. It has been a long road to get here. The past five months have been an entirely separate journey. I have mourned. I have cried. I have fought, and you bet I have researched, and researched about this disease, treatments, and side effects of medications. Through prayer, I do feel a shift happening. I don’t feel the need to fight as much. Fighting is tiring. I’m fatigued enough as it is from AS and parenting little ones, I don’t need to fight a diagnosis. Finding trust is still difficult as I have felt betrayed by my body so many times.

Today was my first injection day, and it started with my average amount of sleep. It’s no fun spending a night awake longer than I was actually asleep. FitBit lies! I was awake for much longer than six minutes thanks to my little humans. Over the past two weeks I have noticed my five-year-old’s anxiety rising. She can sense that things are changing once again. I’ve told her about my diagnosis, my treatment, and what to possibly expect with side effects, that mommy may have to rest more.

social story
I made a quick social story this morning to share with M:
1) Mommy will be starting medicine today. The medicine is called Enbrel. M got to hold the syringe and we read the letters together.
2) The needle will have to go into Mommy’s abdomen or thigh.
3) It may make Mommy feel a little sick, so I may have to rest in bed more.
4) We may feel nervous, sad, or scared about this, but it’s OK to have these feelings.
5) I’ll have to do this every week, but these needles and this medicine will make me feel better.
6) This was a picture of us holding hands with smiles. The medicine will help Mommy’s back feel better so I can do more things with you, like play on the floor, or go for bike rides! She wanted to add to the story, which is always welcomed.

Brian took the day off to drive me to my appointments, which really helped my anxiety. I checked-in with my GP this morning letting her know that treatment would start today. Charts from doctor to doctor don’t always get where they need to be when I need them there, and I wanted to make sure my primary care doctor was updated. Brian and I snuck in a quick lunch date after the morning appointment and headed to my rheumatologist’s office.

The nurse trained both Brian and I on how to do the injection, and then it was time for the real thing!

subcutaneous injection
I chose my abdomen to be the victim today. Next week will be the thigh as I have to rotate sites. “Just push it in” the nurse encouraged, as I was quite hesitant to break through my skin. The needle poke wasn’t that painful, but I definitely felt the burn when the medication went in. Both my nurse and rheumatologist were surprised that I chose the pre-filled syringe over the auto-injector pen. Call me crazy, but I want to control the burn! This way I can go as fast or slow as I need. It took me 45-60 seconds to get all the medicine in, but I did it! First injection complete.

The list of side effects is long, which was what terrified me the most. I’m excited to report that besides my usual fatigue, no side effects here. My abdomen was sore for a few hours, but that’s pretty minor compared to what I’ve read. I will be immunosuppressed though. We purchased automatic hand soap dispensers and hand towels that will be only for me to use. A new bottle of hand sanitizer has found its home in my bag, and I also purchased masks for when I have to get labs done, or sit in waiting rooms. I can officially be called a germaphobe (who works with 2-5 year olds daily.)

While we were driving, I took a video of us travelling through the tunnel for my insta-story. It quickly became a metaphor to me. There is light at the end of the tunnel. Eventually I will get to the other side and walk in the light again. The last thee years have been the most trying on my body, my mood, and my marriage. There have been dark days, and even darker nights, but I have faith that I’m moving in the right direction. Battling chronic illness is no easy fight, but I am refining my weapons, gaining tools, and will continue to battle on for my family and for me. I choose to be a warrior, and maybe, just maybe, I’ll get to dance on my journey towards the light.

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