Enduring Chronic Pain and Finding Hope

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My Story

Hello world!

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.

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What Keeps Me Going

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This post is inspired by my Botox injections appointment for last Friday getting cancelled and pushed back for over a month.

So today’s reality – I am hurting, and my legs are bruised and swollen from giving myself Toradol injections to get a little relief.

With that, I’m writing about the things that helped and still help me get through the hardest days of chronic pain.

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  • Bear. I’ll admit – I’ve been waiting for an excuse to talk about my dog. My childhood dog passed away right as my symptoms from arthritis and fibromyalgia were starting to get really bad. Losing him was really hard – I always felt so connected to him, we had similar health issues and would even be on the same medications. We got Bear about a year after and he is absolutely amazing. He’s a very athletic, yellow lab, who loves to swim and chill on floats in the lake. On the really bad days, driving can be so tough – Driving an hour to the lake seemed impossible but every time I did, Bear made it all worth it by the exuberance of his greeting. There is nothing better than getting a Bear hug from him as he shows how excited he is to see me. When things were really tough and I was barely making it through another day of work my mom would sometimes bring him up to my apartment and he would bring so much joy to me at the end of a hard day.
  • Starting the week off in a positive way. For me this is through my bible study group. After work on Mondays, we meet to catch up on each other’s lives and to discuss our current study. No matter how hard it is for me to sit without showing how much pain I’m in, I always leave these meetings with a sense of happiness and peace.
  • Doing things I enjoy even if I can’t do them like I used to. Volleyball was my sport growing up and I still love to play. A couple of years ago my brother and some of his friends started getting really into beach volleyball and I would go play with them when I could. I knew playing would hurt me but it was worth it to be in the game again – no matter how long I would have to be on ice afterwards. Similarly, during the summer I really enjoy wakeboarding at the lake and I didn’t give it up. Going out and feeling the rush of going over the water helped me to still feel alive on the weeks where I barely made it out of bed from all the pain. I would go out for really short periods of time because my back would get triggered pretty quickly by wakeboarding but just being able to still do it was so good for me. Apologies to my dad if it’s annoying to take me out for such small runs.
  • Having things to look forward to. Whether it is events or trips – I held onto these so hard. Getting excited about something helps your overall outlook seem better even if you are having a really bad day. I would overly look forward to upcoming fun outings with friends and family trips. Even if a trip wasn’t completely planned yet, talking about the idea of it helps me to look forward to the future on days when I can’t escape the pain. This is something I still do and I am really excited/grateful that I do have a trip coming up to distract me from having to wait longer for my injections.
  • Talking with someone who understands. I mentioned in another post that talking with my Grandma really helped me. Every time I talked to her I felt like we were fighting our battles with chronic pain together and I didn’t feel as alone. People who haven’t experienced it can’t understand no matter how hard they try so having someone who does understand is so comforting.

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9 Things You Take For Granted Before Chronic Pain

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  1. The ability to fall asleep and wake up feeling rested. That’s one of the first things to go and the hardest to deal with. I used to love naps but I was always in too much pain to actually fall asleep.
  2. Being able to get ready. Doing my hair caused pain. Washing my face and putting on makeup caused pain. Trying on clothes hurt so much and zippers on dresses became impossible.
  3. Sitting on a backless chair. I got to the point where I couldn’t hold my upper body up because it was in so much pain.
  4. Being able to sit for any period of time without needing to fidget and move. 30 min meetings, doctor appointments, sitting at restaurants, sitting in church – all of these became endurance tests to see how long I could go before letting the pain show.
  5. Cramming too many people into a car. I used to do this without thought and would always end up on someone’s lap. Once the pain came, situations like this became unbearable and I would suffer in silence until we arrived at our destination.
  6. Cuddling on a couch. Being on a couch means constant moving to find a comfortable position and multiple ice packs. It’s hard to fit another human into that. Especially if that someone didn’t really understand how much pain I was in.
  7. Working out. I got to the point where I wasn’t able to work out – it hurt way too much to move and I never had enough energy to even get there.
  8. The ability to have enough energy to cook a meal after working all day. On the bad days, it was a success if I was able to microwave a meal.
  9. Travel. For several years if I had to get on a plane, I would take every medication available to me because I knew how much it would hurt and how much the flight would cause me to flare up. I started avoiding travel as much as possible. I also stopped doing long car rides because being in a car for any length of time was excruciating. An hour was the most I could do and I would have to rest and recover for hours after the trip.

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