A Life of Pain
I’ve always been THAT kid. The kid who was allergic to everything, and couldn’t go to school without her inhaler. The kid who was always falling and breaking bones…not the coolest kid to be! I’ve had asthma since I was a baby. My mom remembers when she first realized it. I was sleeping in her lap in church, and she started to hear me wheezing. She put her ear to my little chest - it was rattling like crazy, and my breathing was shallow. She took me straight to the doctor and yep - asthma. I started getting breathing treatments and Prednisone (steroid) pills/injections frequently.
Fast forward. I started having serious back pain in middle school. I was overweight because I had basically stopped doing any physical activity that wasn’t required in school…which I could frequently get out of because of my asthma. I was diagnosed with joint hypermobility, spondylolisthesis in my lower back, and Rheumatoid arthritis (mostly in my hands at the time) when I was about 14. Spondylolisthesis is a spinal disorder in which a vertebra slips forward and grinds into the vertebrae below it. I started having spinal blocks done, and was put on tons of prescription medication for arthritis and inflammation, but nothing worked. I lived with excruciating back pain for years with no solutions.
In college, I developed a weird pain in my foot. I went to an orthopedic doctor. He couldn’t figure out what it was, so what did he do? The go-to solution for doctors - he injected my foot with steroids. He put me in a boot, and sent me on my way. I don’t know if it was the uneven gait caused by the boot that brought out the root of the problem, but when the boot came off, I started having intense pains in my hip. I couldn’t figure it out. Imagine feeling like your entire internal structure keeping you upright is failing you, and you have NO clue why…and neither do the doctors you’ve been going to for years. I felt insane. I remember one really intense night, when the pain was particularly unbearable, I tried to think of every disorder or injury I’ve ever had. This was before Dr. Google, y’all. I recalled this “trick” I could do when I was younger, where I would pop my hip out - the sound would cause those around me to scream and cringe. I thought it was hilarious, but as an adult I started to wonder if that was some sort of early sign of something I (and every doctor I’d been to) still couldn’t figure out.
Living in terrible pain continued through college and into me moving to Birmingham after graduation. I was drinking a LOT. I no longer had health insurance, and I had to take a job where I was standing on my feet all day, so I could get the rent paid. I couldn’t do anything to stop the pain, but taking Advil and drinking made it “easier” to get through they day. A couple of years later, I had the job and the insurance I needed to go to a doctor about my hip. I counted the days until my appointment. When I got there, he asked me about my past and did an X-ray. When he walked back in with the films, he looked very different than the smiling doctor I met half an hour before. He slammed the films up into the illuminator and I stared at them blankly. “What is that?”, I asked. He proceeded to point out the giant black clouds in my hip joints. “We’re not sure what this is yet…we’re going to need to schedule you for an MRI. This looks a lot like bone cancer.” I’M SORRY, WHAT? I’m in my early 20s and may have bone cancer?! The days waiting for the results were dark. I couldn’t keep food down…I couldn’t stop crying. I thought I was going to die. I finally got the call to come back to the office for my results. He told me I have Avascular Necrosis (AVN) - NOT cancer. AVN is the death of bone tissue due to lack of blood flow. Mine was caused by excessive steroid use for asthma - no one ever told my mom this was a possibility. He told me it was in both hips. One hip was dead and on the verge of collapse, while the other was getting there. I needed to have surgery as soon as possible. It was the weirdest feeling. I finally knew what was going on in my body - I wasn’t crazy - but now I had major surgery ahead of me. I also wasn’t about to let this man who made me think I had bone cancer for days operate on me. I found someone who was highly recommended and made an appointment. This guy was an ASSHOLE. Absolutely ZERO bedside manner. He LITERALLY poked me in the stomach as he said, “you’re too fat to have a hip replacement. I won’t perform that procedure on someone who is too heavy and doesn’t have the strength to heal from something this major. I’ll do a core decompression on the hip that’s less progressed, but you need to lose 20 pounds.” I left that appointment and sat in my car and sobbed. The next day, I joined a gym and pushed myself so hard - too hard - and with that, and barely eating, I lost the 20 pounds. I had the core decompression on the less severe hip. They drilled a hole into the femoral head of my hip (the ball), which is supposed to relieve pressure and hopefully jumpstart new vessel growth. The recovery was awful. I was in so much pain in both hips. Shortly after this procedure, I lost my job and went back to waiting tables and bartending.
Then the worst happened. My other hip completely collapsed. The ball literally crushed in on itself. I had neither the insurance nor the time off work I would need to have a total hip replacement, which was my only option. I walked on a collapsed hip for 4 years, with no prescription pain medication. I was taking up to 20 Advil a day. My right leg was 2” shorter than my left. I had what I lovingly referred to as a “pimp walk”. People stared at me everywhere I went. Kids would pull on their parent’s shirt and whisper and point at me. My heart broke more every day. The pain and the judgement of strangers was too much. Anyone who lives with excruciating pain every day, will tell you that it can make you lose your mind. To have it also be physically evident (and judged) just adds to the mental stress. I thought about killing myself more times than I’d like to admit.
Finally, I found the perfect job to stick with long enough to get a new hip. At 28, it happened. I had an anterior total hip replacement. They told me that I would actually be in LESS pain after the surgery, because I’d been walking on a shattered hip for 4 years. Not. The. Case. When I woke up, I was in the most blinding, mind numbing pain I’ve ever experienced. I had to use a bed pan the night after surgery - they have to know you can pee. I couldn’t do it. I was in too much pain. Two nurses had to pick me up and hold me over one of those stand alone “toilets” with the bucket under it in the middle of my hospital room, while I screamed and cried like a baby, telling them I couldn’t do it. I had to get up the next day and walk. OH MY GOD. I was screaming and sweating, but I took a couple of steps and they put me back in the bed. The entire recovery process was...indescribable. The physical therapy - woof. BUT I had a new leg that was the same length as the other one, and I knew I had WAY less pain to look forward to.
The first day I was able to drive again after surgery, I got into my car in a weird position and herniated 2 discs in my spine. Now we can add back surgery to the list! I had to have a double microdiscectomy 6 months after getting a new hip. I was also then diagnosed with degenerative joint disease.
Fast forward to today. I’m still in pain on a daily basis (not the same as with the broken hip), and I take no medications for it. I do everything I can to keep my body strong…especially knowing that having the other hip replaced isn’t too far in the future. There are supplements I take, stretches I do at home, mind + body connection practices, and I found a workout that I can actually do. I found True40. My biggest fear was, “can I do these exercises when I have a leg that doesn’t move in certain directions, and a back that goes out if I shave my legs in the wrong position?!” The answer is, “yes”. There are modifications for every single movement I make. It teaches you to listen to your body, respond accordingly and to thank it for what it is. It’s the most challenging (and rewarding) type of exercise I’ve ever done. It’s honestly the only thing I’ve ever continued to do for more than a couple of months! Before True40, I couldn’t clench either butt cheek. Every muscle in that area, on both sides, was atrophied - dead. Now, I can make them dance!! I’m building the muscles I need to support my hips and back, as well as every other part of my body. I’m discovering strength I never knew or believed I could achieve. I’m so damn proud of myself for showing up for ME every day. It’s not easy, and it certainly won’t get easier as I get older, but I won’t let my body, or myself down.
Chronic pain affects more people than cardiovascular disease, cancer, and diabetes COMBINED. Unlike acute pain that stops, chronic pain persists, and can lead to biochemical changes in the nervous system. If you’ve never experienced life with chronic pain, it can be hard to understand what it’s really like. Unfortunately, this sometimes leads to a lack of support - and even a lack of empathy - for people going through it. I’ve felt these things for SO long in my life. You need to understand that even if you can’t see it like a bruise, IT IS REAL. It’s harder to “fake” being okay than you could ever imagine. People like me still get up and go to work every day despite the horrific pain, not because we want to, but because we have to. We don’t want your pity. We just want to be treated with the respect you’d give any other human being you come across. Pain is hell. Be kind.