My CRPS Journey started when I was 10. I was active you girl with dreams bigger than my head and a group of best friends I’d had since I was 5. I was already playing the flute accelerating quickly in music. I was an athlete and loved every minute at softball practice. I can still smell that burgundy dirt as you slide into a base or the feeling of a ball as it slams perfectly into your hand, but there’s nothing like making contact with that bat and sending it out way past the field and being able run freely. My family has always said I run funny.
I first injured my foot by wrestling with my dad probably after a practice. After a kick to the shin and a questionable fracture to the growth plate I was sent home and told to rest it. Softball season was over for me and it was devastating.
I forgot to mention I have also suffered from debilitating migraines since I was 8 or 9. So after the initial trauma healed I was sent to PT but the same thing kept happening repeatedly. I would wake up in excruciating pain for no reason. We tried new doctors who didn’t know what was happening or why I was in so much pain. Often times I got the same answer of stay off of it for 6 weeks, cast, ice, no activity, and then pt and this cycle continued for years. Doctors questioned if it was real and many teachers did as well. I warned he nickname “gimp” by 6th grade and my BEST Friends had no idea how to react. Despite it all I somehow kept my grades up and actually accelled in middle school winning 2nd at the California State Science Fair (when I knew science would always be a part of my life).
At school some of biggest hurdles were convincing PE teachers that I was not faking and writing reports was not beneficial for me. I was then put in a special needs PE class where I met one life’s Angels. The kind of person who goes above and beyond their job description because they really care. I spent 2 years with this PE teacher and it was like having a mentor and private PT. I also knew that special needs advocacy would be a part of my life after meeting some really awesome individuals. it actually inspired me to volunteer as a swim coach for the special olympics at 16.
I got diagnosed by the end of middle school but really didn’t get treated until high school. My treatment at UCLA children’s was very multi faceted and basically was composed of pt and exercise, psycho therapy, bio feedback and relaxation therapy, medications and massage/acupuncture later on. The main goal always return to your normal routine.
I had, again the most awesome physical therapist that happened to also teach biofeedback and I attribute a lot of my Wearly success to her. She had and has never given up on me and I truly feel I could not have come this far without you. Thank you so much because I’m eternally grateful for all the work that this person has put in not just with me, but all people with this disease. Another Angel among us.
Part of keeping active was finding a new sport that was safe for me. I had been swimming for years in junior leagues so I thought I could swim and play water polo in high school. I trained all summer to make the team. And was set to be Captain of a team of girls who had been playing their entire lives. I loved the game it was so exhilarating and the water became my outlet; a safe space. We began competing in scrimmages and I was starting and couldn’t get enough of the sport.
No sooner than, I got sick before game season and it was Pneumonia and Whooping Cough. It was resistant to many treatments and I was hospitalized because I would go into bronchial spasms that are actually very similar to my spasms now. I developed activity induced Asthma and could barley swim down the pool without having these hysterical coughing fits. This was just another experience when friends teammates and coaches all thought I was faking through a really scary and painful time. i actually remember coughing and struggling to breathe layed out on the ground left alone in my suit waiting for my mom. It seemed I could never stay healthy after this.
I didn’t give up on my dream of swimming for along time but come the following Spring my coughing attacks weren’t improving so I tried out for our school softball team after being away from it for so long and knowing the risks. I completed the entire season and played short because I had a great arm, but mostly because I was always down in the dirt. I had a great season but after a few close calls I decided to focus more on school and let sports go for now.
I need to mention that throughout middle school and high school my migraines were out of control. They were thought to be made worse by tension headaches and TMJ pain. The doctors thought I would have a migraine that would go into a CRPS cycle so the pain was out of proportion and I would scream bang my head cry and I was hospitalized a quite a few times without help. My migraines felt as if they lasted months and I was always missing school.
By high school the friends I’d had my entire life had gone, I’d tried to create new friends but it was a constant struggle.
I thought college would be the release I needed from everything that was troubling me, so I worked like crazy to get there, and on an academic and flute scholarship no lessons a Rotary Scholarship for my community service. My migraines continued. But my foot pain was drastically reduced my last 3 years of highscool and college. I mean we thought I was in remission.
Maybe, I was. But I want to make it clear that my migraines never stopped and I
I worked in applied behavior analysis with an ultimate goal of special needs advocacy or education advocacy and after 3+ years in ABA and 5 years total working in education and with special needs I was climbing the ladder and working 70 hour workweeks.
On April 23 2015 Is when I broke my other foot and sprained my ankle. I was put in a walking boot because of my history in hopes I could begin to bear weight sooner than later. I was already in a lot of pain so I started mirror therapy and set an apt with my PT the next day. I was in so much pain just a week later and had so much swelling I booked another apt with my doctor. He assured me It was just a bad break and hopefully NOT a non healing juncture. Another few days went by and my foot kept swelling and the pain was out of proportion and I still couldn’t walk or go back to work. After a few days and following the doctors orders of a few extra days of rest I attempted to start bearing weight in my walking boot, after all Inhad been given the okay. After a few mere steps I fell and worried I had injured it further. Back at the doctor, he assured me I was fine and that nothing was wrong. Then I started to see my skin change color. I had already noticed my skin getting scaly but thought it was maybe from being in the boot for too long. After the color change got more severe over a few days and would get drastically worse when my legs were down I knew….IT was back. Was it ever really gone? My worst fears had been confirmed.
We called my pediatric doctor and she wanted to see me right away and it was like a race to the finish line to get me some treatment. None of it seemed to work. We bounced from doctor to doctor trying different things.
We have tried meds, ketamine, tms, iv hydration, pt, relaxation therapy psychotherapy, bio feedback, vecttor, nerve blocks, quantum reflex neurology, mind fit, microcurrent hypnosis, and lots and lots of tests. The reality is there is no one size fits all treatment and there is no cure. The treatments that are available are not usually covered and if they are, we have already tried them.
At this point I have full body CRPS with coverage from toes to my scalp though my stomach and left chest are the least sensitive areas. I also have internal spreading in many organs such as my heart bladder stomach intestines and likely a lot more. I also have a port in my chest to receive fluids for two reasons: Because I have spreading in my stomach/intestines I’ve developed gastroperesis so I have a really difficult time in taking food and and especially fluids. The second reason is more of a bonus reason but since J have spreading in my heart it creates syncope iv hydration can sometimes help to treat this especially when low blood volume is part of the recurrent problem. I also have tremors/ spasms/ dystonia/ siezures And these can involve my entire body or not and also my organs.
My wonderful girlfriend has never left my side. She was there the day we found out My foot was broken, she was there when the CRPS was back and she was there when we made the decision that I need more care and help and left all our favorite things behind and moved in with my parents. She has taken me to different states to seek treatment and has never wavered when standing by my side during this brutal disease.
My family has also been an immense support. They have provided both me and my girlfriend housing they have completely uprooted everything to deal with this mess. My mom works from home to help out more and my sister stays close by and brings me groceries just by chance I’ll be able to eat. My other sister keeps in contact constantly to make sure I’m stable. My grandma is so sweet and calls to tell me every time she gets her chills, a sign of good to come in our family, she’s been such a positive spirit in my life. Then there are my grandparents I really just can’t say enough about their love and support over the years through college and especially now. Their unwavering support has been tremendously meaningful to me as well. And then there is all the people I have met by sharing my story like my best friend in Arkansas or right here in California. I have met so many of you and you all keep me going. I truly value All your friendships so much. I also feel like somehow I need to recognize my Aunt who was battling cancer during the same time. She got me through some of my hardest days and I think she was the most positive lady on earth. I love you dearly and forever.
I don’t wish CRPS upon anyone. It is horrendous and the kind of pain I’d cry for someone else. But, I have learned a great deal about myself and all that I can handle. I have stated he’ll straight in the face and walked on by. I know I’m capable of anything with or without CRPS. A lot of good has come out of my life but I can’t attribute that to the bad just think I’ve awakened to it and I see it and appreciate it so deeply. That is a true gift.
I don’t know what’s next on my journey and how long crps will hang around or if it will ever leave. We will keep trying every treatment we can but I will also keep living my life to the fullest because I was only given one and I’m not waiting.