My mom picked my name, Casey, because it meant “brave” and she wanted a daughter that was strong and fearless. She got a daughter who has skydived, bungee jumped, traveled the world, and cage-dived with Great White sharks –But has struggled to find her voice to share how chronic pain has affected her.
I have felt a desire or a calling for some time to share my story of battling chronic pain but I’ve been anxious to start because I had such a difficult time even getting my family to somewhat understand what I was going through. I am attempting to write my story now in the hopes that someone going through something similar finds comfort and hope in knowing that they are not alone – and that it will get better. I hope that no one else has to feel as isolated I did.
How it Started.
I was diagnosed with HLA-B27 positive ankylosing spondylitis arthritis in high school when injuries obtained playing sports didn’t heal and I was injured more going through physical therapy. I had a base level of pain from arthritis – and I knew it was a scary diagnosis for my age (ie: eventual spinal fusing) – but I was able to maintain a normal life.
That began to change during my junior year of college when my rib started giving me intense pain. Every single breath sent the sharpest pain through my body. Sitting became hard, laying down hurt my rib even more. I had no respite. I was always tired because it impaired my ability to sleep. The only time I wasn’t suffering was when I was able to go out with friends and drink enough that I couldn’t feel the pain anymore.
Senior year, the chronic pain from my rib moved to both sides of my rib cage. I also started experiencing a lot of pain in my neck. My ability to get a good night’s sleep and feel refreshed in the morning diminished even more. I struggled to have the energy to go to all the activities my friends were doing. I started staying in my room more, just trying to find some relief from the constant pain. The one thing that helped me get through senior year was talking to my Grandma almost every single day. She had experienced a bad fall and was also battling chronic pain as she tried to recover. She made me feel understood and not alone and the only comfort I had that year was that we were fighting the pain together. She would speak to the many ways that constant pain affects your personality and your outlook. I will never forget her saying, “when you’re in pain all the time, sometimes you just can’t be nice.” It hit so close to home because I was already seeing the way it was affecting how I interacted with others. Constant pain takes so much out of you that you can’t be your best self, it drains everything out of you and leaves you unable to be your finest in front of others.
I graduated in spring of 2015, moved to Atlanta, and started a job. My rib pain actually started getting better, but my neck got worse and I started getting severe pain directly on my spine. Along with this I started getting horrible pain around my shoulders, upper back, and neck from constant muscle spasms.
While I was seemingly doing well at work, going on dates, and having some sort of social life – Here’s what people didn’t see.
The pain. The endless amount of tests, injections, and issues with medicine. The isolation. The hopelessness.
My spine and my neck were constantly in searing, screaming, debilitating pain. It felt like my spine was shattered, ripped open, and stuck with multiple swords. The effort to move would take so much out of me.
I started struggling to get out of bed and to get through getting ready in the morning. Each action in the morning would take all of my energy. Raising my arms to do my hair was almost impossible yet I still had to get myself presentable each morning. I had been around doctors for long enough to know that when you stop caring about your appearance they start to get truly worried that you have given up and I wasn’t ready to give up yet.
I wrote this to my Mom in 2016 when I was trying with increasing desperation to get my parents to understand the pain I was living in constantly: “Found these while laying flat on my bed, which means my spine feels like someone is jabbing a sword into it without stop, which means my neck is in pain in multiple places. I need to go to the bathroom before I can sleep but the effort to do that seems insurmountable and I haven’t been able to work up to it now for 45 minutes, I won’t even make one step before my inflamed Achilles will yell and make me limp. I would like to turn over and read but moving my spine and figuring out how to rotate my ribs and neck will cause me severe pain and the effort to move will take a huge toll on me. My wrists are hurting from holding up my cell to type this. I took a Toradol shot only a few hours ago and my pain is at crippling levels – my spine feels like it is being cracked apart.”
There’s a downward spiral that begins as you go through chronic pain –
It doesn’t happen all at once. In the beginning you face the pain with bravery, you face it with all you’ve got. But it happens slowly after spending day after day with chronic, never-ending pain. Where every second is an agony you can’t escape. Where every morning you wake up to instant pain and feel like you never slept at all. It starts to happen where you start to lose every part of you that you’ve got to know over the course of your life.
You’re no longer the girl who everyone used to say was always smiling. You’re no longer the girl with the can-do attitude who has never met a challenge she didn’t instantly attempt to conquer. You’re no longer the girl who thrives on being around others. You’re no longer the person your family and friends came to love.
You become the girl who can’t fathom the effort that getting ready will take in the morning. The girl who doesn’t know how she’ll make it through an entire meeting masking the severe pain and discomfort that every second brings. The girl who tries so badly to keep being social but knows that each attempt will leave her bedridden. The girl that collapses to the floor after surviving a day of work and can’t bring herself to move to make dinner or even get ready for bed.
The pain kept getting more and more intense and never let up. I didn’t know how I could keep going. In one of the worst moments I came home from work, collapsed on the ground, and called my parents crying because the pain was so severe and all-consuming that I couldn’t move myself. My parents ended up taking me to the hospital that night and I was pumped full of heavy pain killers until I would throw up. I was on morphine, tramadol, and I had a fentanyl patch on – but received no relief. I could barely breathe through the pain – all the medicine just made me nauseous to try and distract from the pain but I still couldn’t move myself at all without my spine screaming in agony.
Eventually I discovered the spoon theory and connected instantly with the metaphor of living with chronic pain. It explains what I couldn’t. How one task, one activity, takes such a toll on someone experiencing chronic pain. How we physically don’t have enough in us to do all that is required during a regular day. We’re running at a constant deficit and each new attempt at a task robs us of so much. A person with chronic pain who runs out of spoons has no other option but to rest when they run out of spoons. Before this, I struggled to explain to my parents why I couldn’t make it to the grocery store after a day of work, why I wasn’t able to prepare a meal. I couldn’t explain why I had to sleep and cancel plans with friends, why I couldn’t pick them up when they were down the street.
When I turned 24, I realized that I had not had one day of relief since junior year of college.
The pictures below are graphic – but they are the closest visual representation of the level of pain I was experiencing every day.
The Medical Tests and Issues with Medicine.
I went to endless tests to see if there was something going on besides just arthritis. I endured the pain of each test, I became numb to getting injections in my neck and spine no matter how bad they hurt. I’ve had more injections than I could ever count or even guess – A normal trip to my rheumatologist would result in at least 18 trigger point injections. The medicine the doctors started prescribing became intense. Oxycodone, Butrans patch (opioid), Tramadol. The pain killers never dulled the pain, they just made me dizzy and nauseous. Even so, I tried them for months and went through life being high on medicine and not quite all the way there.
I ended up taking a sick leave at work to go through testing at the Mayo Clinic. Both my parents went with me and after two full days getting every kind of test and body scan imaginable, the doctor diagnosed me with having central sensitization syndrome (fibromyalgia) on top of my arthritis. It was my nerves constantly sending pain and muscle spasm signals that was causing the unbearable pain and taking away so much from my life.
I suffered from the strong drugs I was being prescribed and had some scary reactions. I had two drugs react with each other in a way that resulted in me struggling to wake up and losing my memory of an entire night. My family had tried to call me for hours and my brother was pounding on my door about to call the police when I apparently opened my door, but all of that is a memory I don’t have. Another time, I had a reaction to a patch I was using that had me throwing up every few minutes for 12 hours straight. I couldn’t move at all without instantly having to throw up. I was giving myself Toradol injections at home for the pain and gave myself one first thing in the morning one day. I blacked out after standing up after the injection and hit my head on the counter before feeling my head snap back and slam on the floor.
I felt separated from my family and my friends. I didn’t know how to make my family understand how the constant pain makes life unbearable. How I was unable to take care of myself the way I used to. How getting through a day feels like constantly putting yourself through torture and how completely destroyed and spent I am at the end of the day. And since I hadn’t been able to make my own family understand – I didn’t really try with my friends. I had to keep cancelling plans and not be able to attend things I really wanted to go to and I couldn’t figure out how to fully explain why. I had told some friends that I was having back and neck issues but it was hard to express just how much it was truly effecting me, and hard for them to understand when I still looked put together on the outside. The feeling of isolation and not being able to be understood beat me down even more.
I was living the definition of “Instagram vs. reality” – from the outside it probably looked like my life was great, but I was faking being well every single day.
I went on dates and tried to give some a real chance, but I didn’t have enough of myself left to give and those relationships never stood a chance. Full disclaimer – I’m very confident none of these guys were the one but I would have put more of an effort in if I was able to. The girl that went on those dates was a stranger to myself, a shell of the real me.
I kept trying to get through to my parents that I needed more help to maintain somewhat of a life but just trying to say what you’re going through never fully got through to them. I think I scared them as I kept trying more earnestly to explain how desperate my situation was becoming.
The truth is no one can get how such intense chronic pain drains your ability to deal or to cope, without also living that way. And living that way nonstop, for years.
You get so desperate for any kind of relief. You would do anything for even a minute without pain. You don’t know if you’ll ever know what it’s like to live without total agony again.
You get to a point where you lose your hope. I didn’t look forward to my future at all. At the peak of my suffering I stopped praying for a week and learned what complete and utter hopelessness was. (I have always prayed before bed for as long as I can remember). On the worst days, while driving, I would think that if an accident were to happen, it wouldn’t be the worst thing – it could even bring relief. I was at a point where every second of my life was a painful struggle that I was losing to. Where I didn’t know how I could possibly make it through one more day of pain.
The pain took away my ability to survive, my tolerance. My drive and motivation. My hope.
The Answered Prayer.
When I was at my weakest. When I was at the point where I knew I needed to quit my job. Where I knew I needed to move back in with my parents because I wasn’t able to keep up maintaining a life on my own. When I knew I wasn’t able to keep pushing through one more day. That’s when my prayers (and the prayers of many I love) were finally answered.
That’s when my doctor at the Shepherd Center decided to try one more thing.
I went to my appointment on January 17, 2017, and received Botox injections throughout my spine and neck. My doctor used a machine that would make a certain noise, as he was fishing around in my back with a needle, when he hit a spot that was spasming – and that’s where he put in the injections.
That day I didn’t feel anything different. The next couple of days I had more pain as the injections caused my back and neck to spasm more.
Three days in, I was showering in the morning and stopped still as I realized that I could reach my hands up overhead without causing severe pain and fighting to keep going. I was without the chronic, debilitating pain for the first time in 3 years. I broke down in tears in the shower, happy tears that I had given up hope I would ever get again. I had to hold onto the wall of the shower to keep from collapsing.
The Botox didn’t take all the pain away but it took enough away that I was able to learn how to start to live again. How to let myself get excited about plans again. How to be me again. (This is not an advertisement for Botox but hey Botox if you ever need a spokesperson, I’m your girl)
I wrote this back when I first realized the relief, “I feel like I have been born again. I can’t explain the joy – the relief – the amazement of realizing I can do things now and not have to endure the suffering I lived constantly.”
God gave me a new chance at my life, he answered my prayers in His perfect timing. The year and few months since my first round of treatments has given me so many new, happy memories that I never could have imagined in the midst of my suffering.
I’m not living 100% pain-free, I still have days that the pain gets so strong that I rush to give myself a Toradol injection as soon as I make it home. I still take muscle relaxers every night. But now I can give myself that injection and still have the energy to head back out the door to see friends or do a workout class.
I know now that there are so many other people going through similar things. We don’t have to feel isolated and we can lift each other up. We can help others get through their invisible battles – we can help each other to be brave. And we can rest assured that God is listening and that He does answer prayers.
I plan on continuing to dive deeper into my journey on this blog by going into how I got through the day-to-day, the moments that kept me going, all the tests and medications, working on my faith, and more (in much shorter posts!). Feel free to leave comments about your own journey with chronic pain and what’s inspired you to keep hopeful.