Young, In Love and in Chronic Pain—My Story Part 1
Sometimes you have to take a trip down memory lane and recall the pain so that you can get to the gain. I recently re-discovered an album that I listened to a lot back in 2016. I Like it when you sleep for you are so beautiful yet so unaware of it is a contemplative and somewhat dark work by The 1975.
Re-listening to this album, for good or for bad, brought me back to the start of my journey with Chronic Pain. This was an album I had on repeat during the first few months of 2016 when I suddenly developed the worst pain that I have ever experienced…a pain syndrome that I could not get to the bottom of no matter what I tried.
Much like the album, I would describe this time period of my life as complicated and dark. Remembering where I started from is important as it reminds me why I keep moving on the path to health even when it seems difficult. Anything difficult that has come with my new health journey is nothing compared to where I’ve been. I prayed for an answer for what seemed like forever and promised that I would share it with others once I found it. I always hoped my story would help someone so that maybe they wouldn’t have to suffer.
Health problems have been a theme in my life for as long as I can remember. I watched my “Gram” go from a kind hearted jokester to someone who said “Dear God Above, Take me home” on a very regular basis. The Chemotherapy that was meant to help her cancer took a permanent toll on her mental health. She passed away when I was 13.
I sat with you beside your bed and cried for things I wish I’d said. You still had your nails red. And if I live past 72, I hope I’m half as cool as you…I think you can tell. I haven’t been doing too well. (Nana—The 1975)
At the same time Gram was going through cancer, I had my hip fall out of its socket for reasons unknown at age 11 and was also diagnosed with scoliosis at the same time. I had emergency surgery on my hip at 11 and later ended up having my upper spine fused at 16.
In addition to my own health issues, I watched my Mom slowly get sicker and sicker with unexplainable chronic problems throughout most of my life. She experienced chronic hives, eyelid eczema, IBS, severe dust and pollen allergies and many other symptoms. She seemed to have new symptoms popping up all the time all while working a high stress job and also being the primary care provider in our family. Around the time I left for college she was diagnosed with Fibromyalgia and this was the most debilitating of all to watch. She experienced insomnia, chronic full body pain and loss of energy which took a toll on her mental health. As a result of this, I became paranoid that I too would develop Fibromyalgia due to genetics. I thought it would just show up one day and that there was not anything I could do about it.
Despite all of this, I went through college relatively unscathed. My spine was fused and I had completed two rounds of Accutane for acne during my late teens but generally considered myself happy and healthy.
During my Senior year of college (December 2015 ). I started a treatment program via a Chiropractic office called Mercier Therapy. This was a treatment I began with the hope of improving my menstrual cramps. The cramps had gotten really bad that Fall semester and my Mom had found me a chiropractor in the city that a friend of hers raved about for help with chronic issues.
Mercier Therapy is essentially an external abdominal massage where therapists move the position of your Uterus over several sessions. The theory behind it is that if the uterus is tilted or crunched (as can be common) a patient is more likely to experience debilitating cramps. It was theorized by the Chiropractor that my uterus was tilted due to my scoliosis and that straightening my Uterus should lessen the cramps significantly. I began the treatments in Chicago over winter break and was to finish the remaining treatments back at school in Iowa.
The treatments helped my cramps significantly and I no longer was on the verge of throwing up from cramps once a month. After two treatments and the day before New Year’s Eve 2015, I took an Epsom salt bath due to some seemingly random back pain. I generally had very little back pain despite having a fused spine so I thought it was odd for me to be in this much pain. Nonetheless, I shrugged it off and spent my New Year’s Eve at 22 as most young people do….having a blast at a bar dancing and drinking among friends and strangers alike. I was hopeful for a fantastic year. Little did I know, 2016 would be the beginning of a journey that I never wanted to take, a journey with debilitating and chronic pain.
I went back to school a few weeks after the New Year. My back pain had worsened significantly and I began to experience daily pain attacks and muscle spasms up and down the muscles that ran along the length of my scapula. I also began to experience trouble with my pelvis: severe tailbone pain and piriformis syndrome (inflammation of a muscle group in the glute area).
Strangely, as all of this went on I also developed a vigorous infection in my left eye. It took a visit to several eye doctors and finally to a specialist 45 minutes away from my college to determine that I had a tear duct infection. Luckily the eye infection did go away after a round of antibiotics. However, the back pain and spasms continued.
I ended up going to Physical therapist at school. The therapist helped relieve a percentage of the piriformis pain over time so that I could sit again. For more than 3 months, I had not been able to sit more than 10 minutes without excruciating pain. I had to go back to my apartment nearly every day in the middle of the day to lie down on my stomach on the ground. Sitting in class was excruciating and so was working on assignments. I began a habit of frequently entering my apartment after class, playing old records on the record player I had gotten for Christmas and sobbing uncontrollably while lying face flat on the floor. I was exhausted and pretty depressed too.
She said, I’ve been romanticizing Heroin. But how I’d love to go to Paris again… (Paris—The 1975)
It didn’t help that I wasn’t kind to myself about the situation either. I told myself the pain was my fault, a result of years of being a straight A student that wasn’t into going to the gym due to lack of time. I sat studying frequently and lugged around a heavy back pack that was double my girth. I really felt that these “bad habits” had hurt my fused spine. What never made sense to me though in the back of my mind was that the symptoms had arisen very suddenly. I figured back pain would have had some sort of gradual onset, something I could have seen coming.
The semester went agonizingly slow. By day I was in unimaginable pain and by night I was usually out as much as possible, often drinking or doing anything possible to distract from the pain. Pain killers and muscle rubs barely touched the pain but one cocktail and I could be the young and free person I was supposed to be. 22 was supposed to be a vibrant and fun age. If you look through my photos from that era you’ll see plenty of nights out with friends and strange characters. Most of my close friends don’t even know what really went on with me during the day because I acted like the life of the party every weekend.
And if I believe you, would that make it stop? If I told you I need you, is that what you want? And I’m broken and bleeding, and beggin’ for help. And I’m asking you Jesus, show yourself…(If I believe you—The 1975)
In April of that semester, I remember the night before my Senior formal I was up all night with some of the worst pain I had had up to that point. I was really considering not going but, I ended up taking the max dose I could of prescription Tylenol with coating right before the formal just to make it through. You’d never know from the photos. I was really good at hiding it. Sometimes I even think I look happier during that era of my life in photos than I do now.
After the semester ended, I moved back home to the Chicago for the Summer of 2016 and several things happened:
1. I began an awesome internship at a meat company over an hour from my house.
2. I began seeing an acupuncturist who helped me to lessen the intensity of the muscle spasms by 10% or so with visits 2 times per week.
3. I was getting microderm abrasion every other week on my skin to help with the acne that was still around (even after 2 rounds of Accutane)
4. I finally got in to see the Orthopedist that had done my spine surgery and was almost disappointed by the fact that he found nothing visibly wrong with my spine other than a possible minor inflammation in my lower spine. He gave me another PT script, a flexible back brace and a prescription for some more serious pain killers.
Using the PT script, I began to physical therapy at Athletico twice a week where I had a young and attractive male PT manager routinely dig his elbow into my butt cheeks to relax my inflamed piriformis. This was very awkward to say the least but it did help lessen the pain slightly for a few days following each session.
Oh yea and throughout the summer I was on Tinder purely for comedic escape from my exhausting reality. At the very end of June 2016 I matched with a kind and attractive young man from Indiana who lived 45 minutes north of my parents’ house. My internship, by comparison, was an hour south of my parents’ house. We started dating and completely hit it off often having conversations until the wee hours of the morning on many a week night. Did I mention I had to leave at 5:30 am to be at my internship by 7?
During many of those conversations I apologized to my boyfriend for having so many muscle rubs and a back brace and for needing to stretch and strengthen constantly throughout the time we spent together. I apologized that he was not getting to see the real me, the me that I was before 2016. To my surprise, he never saw any of the rituals I had to perform to survive each day as a problem and despite having just met me a few weeks ago cared about me as if he had known me my entire life. He made me feel like the beautiful 22 year old I was and not the unfixable old woman I felt like on the inside.
By the end of Summer 2016 I hadn’t seen much improvement in the muscle spasms and pain. Overall things were about 10% better than they were when I first began experiencing the symptoms. But regardless I was trying my best to live my early 20s like they do on Friends. That’s what you are supposed to do right?
I was baffled that this pain was still around after 8 months. What I did however settle into that summer were some ways to deal with it: self-deprecation, drinks, a non-stop schedule which prevented being alone to think, a brace to drive distances in and a man from Indiana to stay up late and dream with.
Escapism was my best friend. Deep down however, I longed for a real answer. It would take many more years before I found my answer but, each experience was a key pit stop on the winding road toward cure.
To be continued…
NYE 2015…the calm before the unexpected storm
