Thanks to everyone who participated in any way in the enchilada dinner fundraiser in Pagosa Springs, Colorado. It was a HUGE success! We are estimating that between the ticket sales, the silent auction purchases, and the donations, we raised close to $8,000. It's what made it possible for Makayla to go ahead and schedule her appointment for the Ketamine treatment. We can't express our gratitude enough!
As I lay here sobbing in bed I thought I might as well write about what I am thinking. I am still awake because I am in so much pain. I'm exhausted, both mentally and physically. I just realized that yesterday was my one year anniversary since I started having symptoms.
I want to first mention what my life was like a year ago. Roland and I were both working full time. I was working for a trucking company doing sales in the oilfield. It was a 24 hour job, going out in the field during the day, and getting calls all through the night. We both went to school full time, and worked hard to have a 4.0. We were taking Chinese classes and loved it. And we had two precious little girls. R. was almost 4 and M. was 18 months. Any time we weren't working or at school we were busy with the girls.
We were painting the kitchen that night and my foot started to swell. I noticed my toes were a little stiff, figured it was from a long day and went to bed. I woke up the next morning with it so big I couldn't get my boot on for work. I went to my primary doctor and she sent me for x-rays, told me to ice it and elevate it. By that evening it was tingling, like it had fallen asleep. I touched it with the ice pack and could not stand the pain. Within a day or two we went to the ER and they found nothing wrong with it, told me to use crutches and gave me a shot for the pain. At the end of the week the pain was unbearable. We went to the podiatrist because all tests were coming back normal and he thought it could be CRPS, but we had no idea what we were in for.
That weekend we decided to o to Lubbock to get an MRI instead of having to wait to get one here. Just sliding the pant leg over my foot made me burst into tears. The ER doctor was a pain management specialist, and after a short evaluation also thought it was CRPS. We started physical therapy and I would go daily to the podiatrist and get lidocaine shots around my ankle to tolerate physical therapy.
We went to Albuquerque and got a spinal block with hopes that it would take away the pain for a couple weeks, but 36 hours later, the pain came back all the way up to my knee. A couple weeks later we went back to Albuquerque for a nerve conduction test which was the worst pain I have ever had. My husband had to hold me on the table and I screamed so loud the receptionist heard me. I begged the doctor to stop, but he completed the test. That night in the hotel room the pain spread to my entire right leg. I was making invitations for R.'s birthday party and my hand was tingling, going numb and getting weaker by the minute. Within a day my entire right arm was also in pain.
After talking with my primary doctor and physical therapist we decided to head back to Albuquerque and go to University medical Center ER, where my brother met us and we spent all night (10 hours) before getting evaluated. During that long, horrible night the pain spread across my shoulders, neck, left arm and hand, and right side of my face. I ended up spending a week getting every test they could possibly do, and my faithful loving husband was by my side the whole time. They finally did a triple phase bone scan and it showed there was excessive blood flow to my left foot (that's the only part they tested) and very little return. That is the best way to diagnose CRPS. We have made monthly (sometimes twice a month) trips to Albuquerque since then.
My whole body is now consumed by the fire except for the back of my head. I have a cocktail of medicine I take to ease the symptoms, but of course they come with a lot of side effects. There is little known about CRPS, so it is trial and error to find relief. There is no cure, just a slight chance for remission. I can no longer drive, I have vision problems, sometimes my ears get fuzzy and I have a hard time hearing. My jaw hurts to chew food. Despite seven months of physical therapy my arms are still very weak, I can barely hold a gallon of milk. My hands swell. My legs and feet swell. They get discolored, turning bright red, to purple, dark blue, mottling. I walk like a penguin because I have lost range of motion in my feet. I hold my arms up because the blood rushes to my hands when they are down and it is very painful. It hurts to digest food. It is extremely painful when I get cold. My skin is cold to touch. Shaving feels like a sander scraping off my skin, but having hair touch clothing is even more painful. Wearing clothes is painful. I went all summer with no socks or shoes, then with winter it was more painful to have them cold than in a shoe. Stepping on a crumb feels like a knife stabbing me. I have panic attacks and anxiety that is out of control. I have very deep depression. I cannot tolerate water hitting me in a shower so I have a shower chair and detachable shower head that I put up against my skin on low pressure. I can't sleep because of the pain. I had a week of struggling to breathe, followed by two days of unconsciousness. I can't take care of my girls by myself. It is heart breaking that M. doesn't even remember a time when I was pain free. Not a single day has gone by that I haven't cried.
This is no way to live a life. I have given 110% into this fight every single day. It has drained me and my husband. He is my hero taking such good care of me. My family has been so supportive. Members of my church have come on the days Roland works to take care of me and my girls. We have a greater appreciation for the little things like sitting on the back patio and watching the girls play. We have put up a strong fight, but I really wish I could have a break. One day of strength and no pain. I want to lift my little girls and push them on the swings. Clean my house, walk the dogs, cook a meal. That's all I am asking for.