I got CRPS (also known as RSD) when I was 27 years old. The entire year prior to my CRPS, I spent recovering from surgery to my left foot. That surgery had gone great and six weeks later I was healed and back to work. I was a restaurant manager and spent 8-14 hours a day, 5 or 6 days a week, on my feet. So, 8 months later, I was still doing great until one morning in December, when the kitchen was out of avocados. So I ran across the street to the market to grab some and, on the way back, the unthinkable happened. Klutzy me, in all of my glory, tripped in a pothole, on my left foot, and fell. My left foot...the same foot that I had surgery on. Instantly, I could not move it. I could not turn it. I could not put weight on it. I thought I had torn my tendon. The swelling was instantaneous. I went inside, hoping for the best; crossing my fingers that I just tweaked it and that it would soon feel better. I finished that busy day and went home. The next day was worse, though. It took 3 days for my work to send me to the doctor. After the doctor, I was sent back to work on crutches. Using crutches on a slippery floor is incredibly dangerous and I was working in a kitchen with oily, greasy floors for two weeks. Everyday I fell, over and over and over again, until finally I had enough. I took 6 weeks of temporary disability off. The injury, no treatment, and repeatedly injuring my foot over and over again is what caused my CRPS. It took until May for my Workers Comp. to get me back into a doctor, and until July for her to diagnose me. I have bilateral CRPS type 1 stage 2 below my knees.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It is interesting how inter-related parts of the body are. I have CRPS in both of my legs. My CRPS, of course, affects the way I walk (or should I say shuffle?). Shuffling affects my hips and their alignment. Hips affect the back, which affects the neck. It is all one long, crazy process that leads to full body pain. Now it is hard to think back to life before pain. Before my first surgery, which was 8 months pre-CRPS, I was a firefighter. I had just gotten into paramedic school and moved my son and I to San Francisco for a new start after leaving his dad. I was an adult leader in the Boy Scouts and the Girl Scouts. I taught high adventure; including whitewater rafting, camping, backpacking, snow caving, and rope courses. I was a professional whitewater rafting guide on the Deschutes River. It was a lifestyle I loved and I could not get enough of it. Every weekend, I was doing something fun and exciting, or I was on shift at the fire station or at the ambulance company up in Portland. It was a great way to live. It is really hard looking back on it and knowing that I am never going to work an ambulance again or run into a burning building with a hose again. There are times when I get really depressed thinking back on it but, then again, I am so lucky for what I have.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
My support system is not big but it is great. My husband is not only the lead in my support system but also my caretaker. Since being told that I can no longer drive due to the medications I am on, he drives me and attends every appointment and is with me every step of the way. He works from home for now and he helps me with every aspect of my life…from making food, getting to the bathroom, and getting in and out of the bathtub; he helps me with it all. I don't know what I would do without him. My mother is another person who is always at my side. She is the only person that really understands my pain and the horrible side effects of medication. She was diagnosed this year with Psoriatic Arthritis in her hands and feet. On her bad days, she has almost as difficult a time walking as I do. When I have doctor appointments (which is several times a week), she and my sister help take care of my son. My sister is also a huge help. It is hard for me to play with my son like I used to. So when my boy, Keagan, has energy to burn, she takes him to the park or the nearest play place for hours on end to wear him out so we will both get sleep that night. I have friends that I talk to a lot online, which is my major source of contact with the outside world, but that is about it.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Religion is a hard topic for me. My brother is an extremist Christian and believes my pain syndrome is a demon that lives inside of me, trying to possess me, and that the only way I am going to be cured is through laying on of hands and an exorcism. Hearing that and believing in a Christian God is difficult. I try to keep my religion and my disease separate. I am Wiccan.
HOW HAVE YOU RE-INVENTED YOURSELF?
It is really interesting. Since being diagnosed with CRPS, I have thrown myself into trying to become an activist. Every chance I get to talk about my CRPS I take. I believe that the only way that we are going to find a cure and become more socially acceptable is if we talk about it and educate people about what is wrong with us. I started a blog that has really become an outlet for me on how I am feeling and being able to process what is happening to me. I have tried to take up different activities to fill the time that I now stay in bed. I have tried quilting and sewing. I have tried reading and drawing. But writing has been the only thing that has stuck. The more I write the better I feel and the better I get at it, which, in turn, makes me feel even better.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
Since the onset of my CRPS, I have married Steven, my partner and greatest asset in overcoming this disease. We both say that if our marriage can survive this then it can survive anything. I have become a better writer and have found a new avenue in which to channel my activism. Even though I have had my good days and my bad, I believe that I have become a better person through my experience. Luckily for me, the treatment of my CRPS has been covered by my Workers Comp. case. The hard part is that they know very little about the disease and have been dragging their feet on my treatments. My goal has been to educate them and to continue reworking their treatment of CRPS patients so that maybe, the next case they get, the patient will have an easier time than I am having.
WHAT THINGS DO YOU MISS THE MOST?
I miss so many things. I miss mountain climbing and whitewater rafting. I miss my horse and horseback riding. I miss running and hiking to the middle of nowhere. But what I miss more is being able to walk to the bathroom on my own. I miss being able to walk without a cane or a walker. I miss being able to play with my son and helping in his preschool classes. I miss being able to teach him how to swim. I miss taking my dog for a walk. I never got to dance with my husband at our wedding or take a honeymoon. I hate that I had to miss those experiences with him. I hate the fact that I cannot have a baby with him right now and that we may never be able to have one because of the medications that I am on. I miss feeling good. I miss nights where I could sleep through the whole night without waking up crying in pain or crying in my sleep. I miss dreams that were good instead of the nightmares I have now about things attacking my legs. I miss snuggling with my legs wrapped around my husband. I miss shaving my legs. I miss walking barefoot in the sand. I miss my legs being the same color as my hands. My life is so small now that I miss my life. I feel like the world is passing me by and here I am stuck in my bed because it is too painful to get out.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
Just because I look the same does not mean I feel the same. I look like the same Amanda but inside I am dying from the burning, tearing, cutting pain in my legs. I want them to know there are things that I can do and things that I can't, and let me be the one to decide which is which. Even though I hurt, I am still mentally the same person, so don't talk to me like I am slow. Just because there is no cure for my disease does not mean I am not going to strive everyday for remission. People with chronic pain are fighters. Just the fact that we are awake shows that is true. It would be so much easier to sleep the day away or give up, but we keep fighting. What we go through every minute of every day is more painful than a broken bone, more painful than having Cancer, and more painful than having a baby all natural (which I have done). This is the pain I face for the rest of my life. This is my future. But I am going to beat it. I am not a quitter. One day you will see me in high heels on vacation, finally getting that first dance with my husband. That is also in my future because I don't just have CRPS, I am going to live while having CRPS.
*THESE ARE GENERAL QUESTIONS, IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
Thank you, Mary Jane.
Amanda Siebe
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