I have been wanting to write for many weeks, but this medication makes me so fatigued. It’s difficult to make it out of a dark room once I have put one of the girls to bed. The three month trial of Enbrel is officially complete. Last week I met with my rheumatologist. Accompanying me to each doctor’s appointment is a list of questions stored on my phone. This is a running list of questions compiled between each appointment. I have a separate running note for every doctor. My memory is worse than it used to be and I really try to maximize the time I have with each practitioner. Staying organized has helped me remain proactive with my own treatment.
The past thirteen weeks have been a rollercoaster. My mood has been up and down, which has affected my body. My health has been up and down, which has affected my mood. Besides the fatigue, I think one of the hardest things about living with an autoimmune disease is the constant up and down, not knowing what tomorrow will be like. Will I be able to do what I did today? If I do more because I feel good, will it flatten me for tomorrow? Will I have a side effect from this week’s injection?
Believe it or not, I have gotten used to the needle. As the nurse said during the first time I poked myself, “You’ll get used to it.” While I have gotten used to the needle, I have not gotten used to that BURN while the medicine goes in. I’m still happy with my choice of syringe over the auto-injector pen. I take my time to administer the medication and take a break if I need to. It usually takes me about two to three minutes. The pen would administer the medication in 10 seconds!
The drug I’m taking is aimed to slow disease progression so that spinal fusion would be delayed, and if I’m able to achieve remission, would halt fusion all together. It does not undo any previous damage though. Any damage done prior to starting this medication will remain permanent.
I continue to live in pain each day, but I would say the medication is helping me function 30% better overall. I can put on my own socks, roll over in bed, and brush my teeth! These things would make me cringe, yell, or cry before.
Even though things are better, the disease has progressed to affect my eyes. I had my first uveitis (iritis) flare, and this terrified me. If uveitis is in the back of the eye, it can lead to blindness. Thankfully mine was in the front of the eye and blurred vision was temporary. Imagine feeling like you were punched in the eye while in the light, and then enduring a constant ache while in the dark. That was me for three weeks. I was living in darkness behind shades, but the eye has finally healed. Unfortunately, iritis is likely to come back. I have now added an ophthalmologist to my care team.
We spent our 14th dating anniversary at the optometrist and optical centre waiting for my new prescription sunglasses. I kept saying the day was ruined. Brian said, “It couldn’t have worked out better” as my mom was already booked for childcare, and we had the time to run around without the girls. He continues to help me see the brighter side of things.
Overall, the girls have been understanding of what has been going on. Well, the little one is oblivious, but she is my comedic relief. Our five-year-old melts my heart and brings tears to my eyes. While I cleaned the kitchen after dinner one night, she kept herself busy pretending to phone her friend, but her conversation froze me and brought me to tears.
5yo: Hi Gina. Yup, yup. Ya. Can you help me with my mom’s ankylosing spondylitis? Mmm hmm. Oh great! (She turned to my husband then yelled) She can cook for Mommy every day!
Another time, she drew this picture and told me, “We’re all happy because Mommy’s ankylosing spondylitis is gone.” Don’t use play therapy strategies on your own child. It will wreck you! I couldn’t even speak after she told me that as tears were just flowing from me.
Brian has been amazing since my diagnosis. OK, he’s been pretty amazing the past 14 years, but even more so since my diagnosis. His level of compassion, patience, and understanding astounds me. I have been complaining, and whining, and crying about the diagnosis. He said he’s accepted it, that this will always be a part of our lives, and he’ll continue to support me through it. “In sickness and in health” he reminds me. And I can’t help but reply, “But I’ll always be sick.”
I’m not quite at his level of acceptance yet. Not sure I will ever be. Some days I feel like I can fight this disease and refuse to accept that I have it. On top of that, I’m still recovering from mechanical injuries from the last car accident, so there’s additional rehab that I’m focusing on.
My rheumatologist said that there’s still a chance the drug can continue to work and help with the more stubborn spots along the spine and ribs. The plan is to continue for another four months and check-in with her at that point and reassess.
Thank you to everyone who has continued to support us through this. Thank you for participating in the meal train, for calling, for texting, for emailing, and stopping me in person just to ask how I’m doing. Thanks to my parents who are here to help take care of the girls every day so I can go to all of my appointments and still make it to work. The support from each of you means more than you know. It has made me feel less isolated, especially on days where I’m battling extreme fatigue and dizziness, and am stuck in bed.
While my body may be weak, my spirit stands stronger. I can put on my own socks and brush my teeth now. Greater things are yet to come. I have committed to starting a crazy journey this fall. I’ll be going back to school to finish what I started over a decade ago! Thanks for being here and sharing in my journey. Lots more stories to come.