My life has been a consistent series of one medical mystery after another. For those of you who don’t know my story, I’ll start off with a short recap.
Before birth, I had a hole at the base of my spine. If I had been born with the opening still there, the doctors informed my parents that I would have been born with Spina Bifida. By the grace of God, the opening closed up before I was born and I was delivered a healthy baby. Fast forward nine years and my school nurse discovered that my spine did not run down the center of my back. I was recommended to an Orthopedist who told me I had a severe case of Idiopathic Scoliosis. Upon further investigation, I also had a condition known as Syringomyelia. Needless to say, my life was filled with explaining how it’s spelled, how to pronounce it and what it is (even to some nurses)! My parents and I did countless hours of research to get a handle on what I was dealing with and I’d say we did a pretty fantastic job!
Throughout my middle school and high school days, I dealt with insecurities, bullying, and people who just didn’t understand what I was going through. But, I also found strength and beauty in what I was going through. I loved any and every opportunity I had to teach people about what I had and how my life was impacted by it. If they were lucky enough, they even got to see my scars and x-rays!
After all of my back surgeries, visits to the hospital, and bumps in the road, life felt the smoothest it had in a very long time. The only thing I really had to deal with was chronic pain, but those were only on the bad days. I went back to playing sports, traveling, and enjoying everything life had in store.
That was until the end of last year….
Like I said above, the only thing I’ve really had to deal with are the tough pain days. I live with chronic pain, but in comparison to what I’ve been through, I’ve learned to deal with the punches as they come. I just call them my “bad days”. I have good days and I have bad days. On good days, I am productive, I have energy, and my pain level doesn’t effect me. Bad days are, as you would expect, a whole different story. Bad days are when my pain is at a 6 or higher (on a scale of 1-10), when my brain feels like it’s in a fog, and when my energy levels are running on empty. Even after a good night’s sleep, a bad day zaps my energy just by getting out of bed. Some days I can’t even do that…
Towards the end of October, I noticed I was starting to have more bad days than normal. I had pain in new places, and that to me is always a mental red flag. As the weeks went on, the pain wasn’t going away, in fact it only magnified. I met with a series of new doctors that, over the next few months, would ask me lots of questions, run multiple blood tests, and try to get to the bottom of what was going on. Good days were starting to become few and far between and I was starting to worry just how bad things were going to get before we found out what was going on. Finally, a new rheumatologist found an answer. He discovered that I have a genetic form of arthritis called Spondyloarthritis. (yet another word that’s fun to spell….) It refers to an inflammatory form of rheumatic arthritis that effects my spine and my joints.
Ok… lets pause for a moment here. I apologize for throwing another big, complicated word at you. I promise that’s the last one… at least for now.
The news of this diagnosis brought with it answers and hope. Not only did we find the source of the pain I was experiencing, but this could also be a huge reason why I dealt with so many back issues growing up! Of course, that will take time to look into and connect all the dots, but this could be the big answer to all the little pieces of my medical history’s puzzle. For now I still have an uphill battle to face, but it won’t last much longer. Soon my good days will go back to outnumbering my bad days and this post will be but another memory to reflect back on.
My life has not been an easy one, but it has been a worthwhile one. My medical history has taken me on a journey that has made me into the person I am today and I love who that person is. I’ve fought to become this person. What I’ve gone through and currently face may not define me, but it definitely has impacted and shaped me. But through it all, God has been there by my side.
There have been countless moments in prayer, in tears, sometimes even in anger that I’ve asked God “Why me?”, “Why am I still going through this?”, “Why won’t you take this from me?”. Sometimes I get answers.. other times I don’t. But, no matter what, I keep pressing on. I won’t give up. I won’t stop fighting. Even on my worst days, I won’t throw in the towel because even when I feel like I have nothing left, my tank isn’t completely empty. Something in me says “C’mon… Just one more step… Don’t quit now”. It may feel like I’m holding on by the thinnest thread, but somehow it’s strong enough to hold me up. When it feels like my tank is empty and I’m running on fumes, there’s just one tiny drop left that keeps the engine going. So I pause, sometimes to rest, and then I pick myself up and keep going.
There will come a day when the pain will subside. There will come a day when my healing will come. But there’s a powerful story within the scars and pain that have been a huge part of my life. To deny my chronic illness would be like ripping out pages of a story; Without it, you wouldn’t fully understand me. I’ve never stopped praying, I’ve never given up, and I never will. Talking about my pain doesn’t define me. Talking about my pain gives others the strength to keep going when their bad days are overwhelming.
So to whoever you are,
You’re stronger than you know. When life beats you down, never stop getting up. Pain is real, but so is hope and healing. Rest when you need to, but never stop fighting. If the mountain in front of you seems to big for you to move, find other people who can help you move it with you. Not everyone will understand you, and that’s okay. Find the people that will unconditionally support you, love you, and pray for you and don’t let them go. Lastly, remember these words. C’mon… Just one more step… Don’t quit now.
Love and blessings ❤