This is the start of my health, school, work and love life story that I have been writing for a few weeks now. It has gotten so long that I am going to post it over the course of 5 weeks, every Friday. At the end, I may post the whole thing in one post if people would like it all in one place. This is my fight with Fibromyalgia. Thank you for reading my story.
My health issues started when I was 8. I was standing in Boswell's in Lafayette with my dad and all of a sudden I was on the floor crying and my knee hurt and I didn’t understand. When my dad went to look at it, my kneecap was on the side of my leg and my lower leg was jetting out to the side at a 70 degree angle from my upper leg. Craziest this I had ever seen but it didn’t process until later because it hurt so badly. I have no idea to this day how my dad knew what to do, but he magically knew and smacked my kneecap back into place. I don’t remember if he took me to the hospital that day (I’m guessing so, they probably wanted to make sure I didn’t tear anything because all of this was new at the time), after a while all the dislocations and hospital visits tend to blur together when I was young. I’d have to be Sheldon from The Big Bang Theory to remember all of the times I went to the doctor or the hospital for my knees, but there are major ones and themes that I remember to this day. The doctors eventually diagnose me with Sublexing Patellas, a fancy phrase for dislocating kneecaps.
The reason? I had Ehlers Danlos (a connective tissue disorder that in my case caused all my ligaments and skin to be stretchy) that I got from my mom & kneecaps that sit off to the side from my dad. The combination of the two made it so my knees dislocated a lot. And, after enough dislocations wore away the bump on your bone that is supposed to keep it in place, it got even worse. I also don’t remember how quickly it escalated, but by the time I was 11, my knees were alternating dislocating a couple times a week. I pretty much lived on crutches for a good portion of 6th grade, occasionally in braces.
One would go out and then the other one would get overwhelmed from compensating and go out, and the cycle would repeat endlessly. It got so bad that my parents & I decided that I should try a Lateral Release, a procedure that cut the tissue on the outside of my knee to try to get the kneecap to settle in the right place.
We started on the left because it was worse than the right by a little bit, so why not? I had my first surgery when I was 12.
It seemed like a fairly normal procedure but before it healed enough to walk on it fully, my knee just started aching and it wouldn’t go away. My knee would get hot and red and sometimes shiny, so the doctors diagnose me with Reflex Sympathetic Dystrophy. I tried a few treatments but nothing helped. And then the rest of my leg started hurting. And then my other leg started hurting. It hurt so badly and I was so young, I was afraid to walk on it. So they doctors gave me a wheelchair. I was in that for a few months, pushing myself around as I could but mostly needing help. At this point, I was barely going to school and most of my friends didn’t really know how to handle the new me, so they kinda fell away, except for two, but I didn’t get to see them much. It was a very lonely time. I would spend most of my days at home, by myself if my parents were working. My mom would wake me up, take me to the restroom, take me to the couch, bring me breakfast and I would hang out there until she came back at lunch from her work that was about 15 minutes away. We would watch half an hour of Perry Mason and she would bring me lunch & take me to the restroom again if I needed.
Then she would head back and if she had a meeting, she was home pretty late, otherwise she would come home right after school. My dad had to commute so he was gone for long hours. I don’t know if it was harder on me or on her & my dad to see me go through this. After a while, I wanted to get out but wasn’t up for full school yet. It just so happened my mom worked at my middle school and so she talked to the other teachers and would bring my work home & I would do it as I could & turn it in and when I was at school, I would help out in the tutoring lab & hang out in my mom’s room if I needed to. One day, I was trying to make my way to the tutoring lab because I was meeting a new girl that I was going to be helping with math (the very beginnings of my process I’m working on to be a math teacher) and the kids in the hall were messing with me as I was pushing myself, putting their feet in front of my wheels, things like that, and this random girl stood up for me and stopped them and helped me. When she asked where I was going, I said the tutoring lab and she said that was funny & that that was where she was headed. So when we arrived, Mrs. G said “Oh! I see you two have met! This is going to be who you are tutoring.” That was the beginning of one of the most important friendships of my entire life. Doc has been there for me for some of the roughest times and has always been an amazing friend. A little while after meeting Doc, I was in physical therapy to keep my upper body strong and suddenly my shoulder started hurting. Then within the month, it had spread to the rest of my arm & my other arm as well. I spent about 6 months in the wheelchair before a doctor at UCSF told my parents that if I didn’t get out of the wheelchair soon, I would probably be in it for the rest of my life.
So my parents signed me up to go to a stroke rehab facility in Vallejo to learn to walk again. It was some of the hardest three weeks of my life.
Though I made I through with the inspiration of my brother, who had been paralyzed in a tragic DUI in 1989 and went through 6 months of rehab never mind countless surgeries and health problems due to various complications of effects of the accident. At the facility, I was one of 3 people under the age of 65. One woman was in her 30s and had a disease that I can’t remember, but it caused problems with walking and the other was a little girl with Cystic Fibrosis. Over the course of the 3 weeks, I did various types of physical and occupational (where you learn motor and life skills) therapy and slowly learned how to push through the pain. I remember taking a trip to the mall, but the trick was that I had to push the wheelchair and walk while I shopped, otherwise I couldn’t move around. I could take breaks as needed, but to shop, I had to walk.
While at the facility, they held events occasionally like Bingo. I went for something to do and have had an affinity for Bingo ever since. I was playing and noticed the gentleman next to me was getting numbers but not putting them on his board. So I started telling him when he had numbers called & stamping for him. He was an older Chinese gentleman who had had a stroke, but still wanted to be out with other people. I don’t remember if he ever said one word to me but I was grateful for a friend. I refer to him as my bingo buddy. My parents stayed with me some nights but worked at the time so there were some nights I spent alone. My Gramma gave me a CD & CD player with headphones for while I couldn’t sleep (I’ve had sleep issues that long). It was the Backstreet Boys.
I did like their music but I developed a deep love of them because they reminded me of my Gramma’s love for me, a woman who helped raise me and with whom I was very, very close to. If she wasn’t in her 70s, I’m sure she would have slept in the chairs like my parents did when they didn’t have a cot for them. Since I started in December, they were kind enough to let me go home for Christmas and I actually went home for good and walked through my front door for the first time in months on the last day of 1997.
More to come next Friday, August 4th, 2017.