This is the second in 5 posts of my health & school history.
The previous post is at https://steemit.com/health/@swinterasu/the-beginning-the-first-of-5-posts-that-contain-one-long-story-of-my-health-school-work-and-a-bit-of-my-love-life-because-i
The third post will be next week.
I had weird ways of coping with the pain. I remember crumpling paper over and over until it was as soft as fabric, trying to take out my frustration on something. I remember biting down on my thumb so hard that you could see clear teeth impressions for far longer than seemed healthy. Around this time, I don’t remember exactly when, but I started dealing with the overwhelming feeling that I was so sick because I deserved the pain for some reason (something i did as a kid, something i did in a past life, I didn’t know what but it was the only thing that made sense for a while). I also started dealing with the urge to cut myself when i felt like I had done something wrong or deserved punishment for some reason. I was lucky, I started dealing with my issues before it got bad enough that I have deep scars, but it is not something that is easily shaken.
I used to cut where I could hide it. Under my watch, under my bra line, places my mom wouldn’t see because I knew that it would hurt her so much. Finally I broke down and told Doc. She helped me without making me feel bad. I showed her my scars and what I was doing to my body. To this day, when I mess up, sometimes I have the feeling like I should cut myself, but thankfully Doc, and now Pickle (who comes later in the story) & a lot of self-talk have helped me overcome the action. I haven’t taken a sharp object to my body intentionally for years and the desire is far less compelling than it used to be, but if I am honest with myself, I still have the feeling sometimes that I should.
I don’t remember a lot of the details of my physical health over the next few years. It was a blur of doctors and treatments. My mom spent hours researching new treatments but with no clear diagnosis other than “Chronic Pain,” it was next to impossible to find a specific treatment (little did I know that when I did get a diagnosis at 19, it was going to be just as hard to find treatments because the condition was barely understood at the time). I tried physical therapy, acupuncture, acupressure, Chinese massage, biofeedback, meditation, therapy, pain management classes, chronic pain support groups, workbooks, so many pills I can’t even count, herbs, vitamins, massages, water therapy, wore special shoes to reduce the dislocating, and so many other things that I can’t even think of. Thank god my mom was a teacher and had amazing insurance, even though the unconventional stuff we had to pay for, a vast majority of things were covered. If I had to estimate, I must have spent over a million dollars with all of my various hospital stays, treatments, test, equipment and appointments, maybe 2 million. I had hundreds of thousands of dollars of bloodwork done, MRIs, X-Rays, braces, saw what must have been over 100 different doctors before the time I was 26 and lost my insurance through her.
Along with the chronic pain all over my body came insomnia, skin sensitivity, migraines, depression, stomach problems, heartburn, mental fog (which was one of the worst problems) and a string of various side effects from medications, some with very long term effects like weight gain.
Around 15, I finally went to the mental health clinic to address the sadness and anger I had towards being sick. I was diagnosed with Major Depressive disorder and tried so many meds that I lost track. I remember a few years into my pursuit to make myself feel better mentally, I went through a list of all the antidepressants that they had available and we compared it to my ‘meds taken’ list. I had literally tried everything. The Lexapro worked a little tiny bit, so I guess something was better than nothing, but eventually it stopped helping. I tried therapy, but had a really hard time opening up (still do to this day, but that is for a later post). I started feeling worthless, or worse, like I was a burden to those I cared about. I was suicidal for a while, which now that I look back was one of the most selfish things I could have done, but in the moment, it made a lot of sense. Thankfully again I opened up to Doc. She secretly made plans with my & her parents so that I would rarely be alone. I still credit her with saving me in so many ways. Eventually I just learned to live with feeling shitty and being depressed and eventually no longer wanted to end things.
High school was rough for me, but not for the typical reasons that people say. I wasn’t bullied, I didn’t struggle with the work (I did miss a TON of days of school, but did the work at home and taught myself most of the time with resources of the internet & books they gave me or I found and the nurse made it ok for me to miss that much school, especially because I was keeping up with my grades. The fog made everything take longer, but I was able to figure it out. Despite everything, I ended up with a 3.4), I had lots of friends who were by my side through thick and thin, but my health was rough and I hurt every second of every day. I did get to go to all the typical events, like football games and dances and pep rallies, but i hurt all throughout it.
I went to a support group for kids who had crazy things going on in their lives that the nurse at my school did 6th period every Thursday or something like that. It was helpful, but I was the only one with Chronic Pain so no one really understood a lot of what I was going through. And the Chronic Pain support groups were filled with older people who couldn’t relate to me and what I was going through at such a young age. Even the groups I found online had people at the youngest in their 30s, which was just so alienating to a teenager. I had friends, I had family, but I felt so alone. So unlike everyone I cared about. No one I knew had anything like what I did. I had 3 boyfriends over the course of my 4 years in high school, the last one & I lasted for almost 7 years. They were a great source of comfort to me, but I still felt very misunderstood. My last high school boyfriend was probably the biggest support. Along with my folks, he saw me through the three other surgeries I had from 17 to 19 to try to fix my knees.
I don’t remember how they figured it out but they determined that my patellar tendon, which is supposed to go from the bottom of your kneecap to the middle of your tibia about 3 inches down, actually connected to the side about 2 inches, so it was like a string being pulled tight that was trying to go straight, so it would pull my kneecap off to the side.
So they did a surgery on each leg that took off the part of the bone that connects to my tibia and moved it to where it was supposed to be. They also did a Lateral Release on the right knee that hadn’t been done yet at the same time as the Tibial Tubercle Transfer.
(this is how my knees look after the transfer, this is how the are supposed to be)
(the star shows where my Tibial tuberose was before the surgery)
The third surgery was a while after once the bone had settled to remove the screws because they were starting to cause problems. The surgeries worked for the most part, but they still dislocated from time to time.