“Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. God is awake.”
Anyone who knows me knows that I’m not one to give up. I’m determined, resilient, and optimistic. I’m able to stay positive and I look for something good in every situation. Sometimes, though, unexpected flare-ups happen that force me a few steps back. I’m currently terrified, but I’m trying to surrender. I’ve accepted that I don’t have control over anything that’s happening in my body. I’m not giving up, I’m just letting go.
Here’s a timeline of events over the past three weeks:
April 26-29 – new jaw and elbow flare-ups + started a 3-day dose of prednisone
May 4 – spoke with my FOP specialist, Dr. Kaplan, after I noticed more pain in my jaw; he suggested I begin an additional 14-day dose of prednisone with a taper
May 5 – scheduled an appointment with my PCP and started the tapered prednisone
May 6-13 – elbow kept locking at a 90° angle and then unlocking randomly throughout this week (I contacted Dr. K who said it’s common to have symptoms like this with an elbow flare-up)
May 14 – noticeable loss of jaw mobility
May 17 – more loss of mobility (currently able to open 1 cm)
May 18 – last day of prednisone
There have thankfully been a few better days mixed in with all of the above, but the pain seems to be unrelenting. Most of my time has been spent on the couch with an ice pack comforting my jaw. I’ve lost significant mobility in just two weeks and am in the process of grieving this loss, something that fellow individuals with FOP know all too well.
I’m already learning how to adapt to the sudden progression of my jaw. I’m trying to avoid (or be cautious with) crunchy and chewy foods, and I’ll soon be adjusting my diet to include more smoothies and protein shakes. It takes me a lot longer to finish a meal now, but I’m appreciating being able to eat even more than I did before my jaw locked.
The scariest thing about dealing with an FOP flare-up is the not-knowing-when-it’ll-end part. Adapting to less mobility comes naturally to me, but staying patient for the flare-up to run its course is very exhausting and makes me anxious. I’m working on surrendering because I want to make every effort to continue living to the best of my ability in spite of my disease. I’m fully aware that I can’t do anything to change my current situation, so I’d rather give my pain and fears to God than waste my energy being angry.
If you’re unsure about what this type of surrendering means or want to understand the importance of it, I recommend reading this blog post from aBodyofHope.
“While my body may act as a prison, forcing the white flag of my systems, my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.”