Ketamine infusions are my last stop before any kind of SCS or cortical stimulator. They work well for me, but because I have bilateral cochlear implants and an ankle tightrope, if I were to get an infection that caused rejection of the SCS, then all of my internal hardware would be threatened. Most importantly, my cochlear implants because they provide me with my ability to hear. Without them, I am completely and totally deaf. So it's very risky for me, because there is a chance that I could lose a whole sense.
Over time we are at risk for a deterioration of heart and kidneys from being on years of meds. Sometimes, I feel like the techniques or methods that gives us RSDers to have the best quality of life are often at the expense of other body parts. I guess the way I look at it at this point, is I want to have the best life possible today. If I'm taking years of my life, at least I know that I am living as much as I can in the moment. Honestly, this moment is all that we are guaranteed. Even if my life is shortened, I want to know that I lived the best possible life. Make since? Just my two cents.
PT is a pain to start and do, but once you get into a routine with gradual progress, I personally found that it got easier. That's not to say that I didn't have days where I bawled at PT because I definitely did. Initially, I think I only tolerated the first half hour "well" and the second 30 minutes was tortuous. Eventually, I worked my way up to 2 hours of intense, non-stop physical activity. Since then, I haven't looked back. When you start at "rock bottom" and have to fight your way upward like that, you vow to yourself to never let it happen again. I still go to PT periodically, but I spend far more time in the gym, at taekwondo, in the pool, and skiing. Alone, doing what I want at my pace. I started at rock bottom in a wheelchair 24/7, I swear I will never stop moving to avoid going back.
Your pain tolerance is out of this world, and yet that's not enough most of the time.
You choke down a wave of intense pain, that would send most people running to the ER for relief, down with a quiet whimper.
If all else fails to bring pain relief, you know you'll pass out from pain at your breaking point.
Crying is not an option. It simply increases pain.
Everything feels like a horrible tube of Icy/Hot on steroids times 1000000
Everything feels like an eternal visit to the gas station and someone lit a match.
Blankets and even clothes are just unbelievably excruciating.
You are a teen or adult crawling to the bathroom. (Basically anyone other than a toddler)
Having long hair hurts your face and back.
"What's sleep?" You ask. "When did I last have some great quality sleep?" You can't remember.
Shaving, driving, grocery shopping and listening to loud music are different kinds of torture techniques for those with allodynia.
You can't decide if your crutches or wheelchair is helping or hurting you.
You can't decide if you are feeling better or just getting used to the pain.
You are asking yourself, "Is that a new CRPS symptom, or a side effect of my medication?".
You know you have RSD when your legs could be mistaken for a forest because you haven't been able to shave for months because of terrible allodynia.
You know you have RSD when you have 5 colors in the summer. Pale, sunburnt, tanned, "normal", and CRPS which for me includes every color of the rainbow and then some.
At the end of the day, you know what it truly means to fight anything a force that threatens to pull you down.
After all, you are always praying for the pain free days, when you have completely forgotten what pain free feels like.
"When you come out of the storm, you won't be the same person that walked in. That's what the storm is all about."
June 26th, 2012 is a day that changed my life as I knew it forever. I was on a mission trip in Farmington, Michigan with my Youth Group. It was about 12:30pm when I was scraping paint and rust off of a metal chair in preparation to repaint it. The scraper slipped and crushed my right pinkie against the armrest. It hurt, but I brushed it off quickly and continued working. Later that day, I jammed that same finger when I deflected a ball coming at my head. At that point, I nearly passed out from the pain. Strange for someone with such a high pain tolerance. My dad told me I was fine and to keep ice on it. Days passed and I didn't sleep. I was not okay. Far from it actually. Little did I know a monster would soon engulf my body...
A few nights ago, I was promoted to 1st Grade Red Belt Decided. It was challenging being in and out of the hospital and working 40 hours a week, but I managed to get all my training in and get my new belt. A special thanks to my mom for coming out and supporting me at this testing. It's pretty incredible to see my evolution as a martial artist and I think it is most evident in my sparring. Tonight's sparring rounds were definitely 2 of my better rounds. As always I couldn't do it without my awesome instructors to push me to improve. So I guess this means 6 months to black belt! :)
It must be nice to have a body that cooperates and doesn't fall apart every 2 seconds...
I'm sorry to complain when I know I should be thankful for what I have, but I am so over being limited in every aspect of my life by the CRPS. Even though I do everything in my power to live life without regard for the CRPS (trust me this backfires sometimes!), it's keeping me from my dreams.
My college education is horribly affected by my CRPS. I need inpatient infusions every 2-3 months and I have to miss a ton of classes. I want to go to school in Colorado for a highly specialized wilderness emergency medicine, but guess what? I can't leave PA...
My body. Ugh. Between CRPS, dystonia, dysautonomia, joint hypermobility syndrome, and everything else, nothing works properly for more than 2 seconds if ever. I have so many physical endeavors I'd like to take on, but the reality is that some of them just aren't safe to even attempt.
I'm an 18 year old trapped in the body of an 88 year old. I should have a wonderful higher education experience and then hopefully a career. Along the way, find the man of my dreams, get married, and have a kid or two. Raise the kids and then enjoy retirement. Why do I get the vibe that my life is not going to look this way? It's frustrating to know that realistically, I can try as hard as I want and for certain aspects of life, it's not going to matter...
Let's just say I came to a crossroads today. I really wasn't feeling well, completely exhausted, and wracked with pain from head to toe. I knew that I had three taekwondo classes this evening and I seriously considered backing out for the day. No one would blame me for doing so under the circumstances anyway.
But then I sat there and thought, "Missing classes doesn't make State Champions." "How much do you actually want to earn your black belt?" "Tonight's your swat night and you know that the kids and parents know when you're not there." "Missing SWAT classes never made good Level 1 instructors."
"But everything hurts. I'm tired. I'm don't feel well." So on and so forth.
I'd seen this picture a couple of hours before class and I was thinking about it as I dragged myself to taekwondo. "This is isn't going to be pretty", I thought to myself. The first class was great, no complaints there. Within the first 5 minutes of my second class, everything hit me at once and it was tough. The first time I did my form it was a mess. I couldn't keep my balance on the kicks to save myself. Eventually, that got better as the class went on and I thought I was out of the woods. I couldn't have been more wrong. I did my weapons form and it turned out okay; definitely not up to Meghan Bayer standards, but it was okay.
The third class, my leadership class. I'm thinking to myself, "I can do it, I'll get through this." Then I heard four words I usually don't mind, but tonight I was not feeling it. "Get your gear on." Let's just say it is not possible for me to internally groan any louder than I did then. As I stood facing my first opponent for sparring, I was just praying to survive the match. Well, I survived that match, and the next one, and the next one, until I had beaten all the boys in my class.
This was the turning point. I showed myself the hard way that I can do anything even I'm almost certain it may do me in. Sparring is not my thing. I am much better at forms and weapons than sparring, which I think was part of why I was a bit shocked. I walked away with bruises, a swollen knee, and subluxed joints to show for it which is very typical for me.
I hope that the road I decided to take tonight will pay off when I'm a black belt and hopefully someday a state champion.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!