Jamie’s Journey with CRPS/RSD
Donation protected
Hi! My name is Jamie and I am 21 years old, I'm a college student, volunteer, I love working (when I'm not sick and can find a company that can see my ABILITIES). I love people and animals. I have a very strong faith, I love to be active and I like to think of myself as a typical small-town Kansas girl. However, that's not nearly as true as it used to be when I was a cross country and track runner. I had ran 3 seasons of cross country, with 3 State appearances and 2 seasons of track, with 2 State appearances (and one medal). I had played sports from the time I could walk until the day in March of 2011 when my life changed forever.
No doctor can explain why my body turned against itself, but essentially that's what happened. One day I woke up to pain in my left foot. I thought I had just strained it, but as the days went on I began to realize that this wasn't just a strain. When x-rays didn't show anything I was sent for a bone scan. When the radiologist looked at my foot and lower leg she called in another person, then another because my leg was ice cold, purple/blue, mottled, and swollen. I was also hypersensitive to touch. They sent me over immediately for sonograms of my legs, where it was determined that my vascular system is abnormal, yet "normal for me". This was the first time a doctor told me that I wasn't totally healthy. Soon I saw more doctors, was admitted to the hospital in Topeka, had an angiogram and nitroglycerin injected into the vascular system of my left leg to restore blood flow, and eventually I went back home, without any answers. Because I was 17 (a pediatric) it was difficult to find doctors who would see me, so one morning my mom, dad, and I loaded up the car and drove up to Children's Mercy Hospital in Kansas City where I was diagnosed with CRPS/RSD (Complex Regional Pain Syndrome or as it was formerly known, Reflex Sympathetic Dystrophy). Since that day in March I have been fighting against the fire. A fiery pain that now has a name. CRPS. According to doctors CRPS "is the most painful form of chronic pain known to medicine." The McGill Pain index has CRPS at the top of the scale of pain. Rating it higher than cancer pain, unmedicated childbirth, and the amputation of a finger, toe, arm, or leg without anesthesia. The hardest part about living with CRPS is there is no medicine to treat the pain and no cure for the disease. It often progresses, as it has for me; starting in my left foot in 2011 and as of now, May 2015, four years later CRPS stretches from my toes, throughout my foot and up my leg, into my hip and to just below my chest on the left side of my body. I also have a more mild case of CRPS in my right foot, my "good foot". My left leg and torso is named "Smurfy" because it turns blue and it's a code name for it when I need a break when I'm with friends. In 2011 after heart and seizure medications failed to calm my nervous system I was transferred to North Kansas City Hospital where I have an amazing doctor and many amazing nurses! I had 6 nerve blocks in the fall of 2011, eventually those failed and I heard about a spinal cord stimulator (scs). I had a trial implant in November and then on December 21, 2011 I had my scs implanted. Things went great after that. I could walk without crutches, and I could concentrate at school and I was even able to walk across the stage and received my diploma when I graduated high school in 2012. However, shortly after graduation I started having more pain. We talked about more surgery to work on my stimulator but I decided to wait until December because I was starting college soon. My first semester of college was difficult with appointments, physical therapy, and scheduling my surgery for a scs revision on December 3, 2012. Because I wanted to come back for the spring semester on time I chose to finish my first semester 2 weeks early so I had to take all of my finals in one day! It was crazy....but I did it! The second surgery seemed to be a success but two months later I was having problems with my stimulator again. My doctor and my programmer (for my scs) decided that I needed to have a different type of surgery, one where instead of the wires for the scs being on top of my spine they would take out a piece of my spine and then feed the wire down between my spine and spinal cord. It was a big surgery, but on May 22, 2013 (my 1/2 Birthday) I had the surgery. Things seemed great after that! I could walk with less pain, and I even got the brand new scs system that had a different remote and allows me to have up to 14 programs, or different types of stimulation to try and trick my brain into not feeling as much pain. However, in January of 2014 CRPS took a turn for the worse. It started progressing and my pain was intensifying. My doctors started trying medications, which just made my brain foggy, I had 4 more nerve blocks in March/April of 2014 and since those didn't work I've been trying more medications since then to try and help my pain. In late January of 2014 I had to start using crutches again because I couldn't walk without my leg giving out, or get across campus anymore, even though I have handicapped parking. Since then I've tried lots of medications, pain creams, alternative therapies, and I recently had a 4 day inpatient ketamine infusion, which unfortunately didn't help my pain :'( . I take a menagerie of pills throughout the day that allow me to get out of bed, and move around on my crutches, but my disease continues to become more painful and also continues to spread as it now affects my right foot as well as my arms, hands and torso. On January 19, 2015 my medical issues became even more complex.( I know, hard to believe!) I now also fight daily to breathe and my heart beats irregularly, skipping beats, adding in extra beats, and going from about 30-40 bpm (beats per minute) to over 150 bpm in just a moment. I have been diagnosed with tachycardia which is an abnormally fast heartbeat, but they can't give me enough medications to fix my high heart-rate because it also bottoms out and goes way too slow as well. Since January I have been in the Hospital 3 different times for several nights each, in the Emergency Room 3 separate times, once by ambulance, and one time resulting in admission to the hospital. I've spent time in the Cardiac Intensive Care Unit, the Cardiac Care Decision Unit, as well as other floors of the hospital. I have two primary care doctors, two palliative care teams, a pain management doctor, a neurologist, and a cardiologist as well as a physical therapist. So, as you can imagine I spend a LOT of time at the hospital and in doctors offices. Because my disease is progressing and causing me a lot more pain my doctors are trying to get me scheduled to go to Mayo Clinic in Rochester, MN to see if there is anything that they can do for me. Currently my doctors are also testing for other autoimmune diseases that might be causing some of my heart and breathing problems as well as making my CRPS worse.
I am not the type of person who asks for help, especially money but I am in need of additional medical equipment including a wheelchair for long distances (Specifically an ultra-light wheelchair that weighs less than 15 pounds because I do not weigh much more than 100 pounds myself). Due to leg tremors and instability in my right leg (my good leg) I am needing to add hand controls to my car so that I can continue to drive safely. There will continue to be travel expenses as most of my appointments are in Kansas City (2 hours from home) and the Mayo Clinic in Rochester is approximately 8 hours from home. I am also in the process of working with my Labrador Retriever Rusty to train him to be an assistance dog for me, so that I can be independent and have the peace of mind that Rusty is there to help me.
With my current state of health it has been impossible for me to work while attending college, and while this summer I may have the opportunity to work for a summer reading program I may have to give up that opportunity to go to the Mayo Clinic, which is very hard for me because I want to work, and I finally came across an organization that believes in me and is willing to look past my disability.
CRPS is a battle happening 24/7/365. It's a battle that gets me down sometimes but I continue to fight because I believe that "I can do all thing through Christ who strengthens me." Philippians 4:13. Although CRPS has continued to take more away from my body....from my ability to sleep (an average night is about 3 hours total for me), to my appetite and ability to eat (I've never been a big eater, but I eat by the clock--when it's lunch time I eat, same with dinner. My appetite and desire to eat basically doesn't exist; my ability to walk, to think and process information, to live an age appropriate life, there is one thing that I refuse to let CRPS take from me: my ability to go to college. I have always loved learning and when CRPS took my ability to run, and many of the other things that I loved I promised myself that CRPS would never take my ability to go to school and to succeed. I went to college straight out of high school, actually graduating high school with 15 credit hours, I went on to Washburn taking 12 hours (a full time load) every semester until the Spring of 2015 when I was forced, due to hospitalizations, to drop to only 6 hours, two classes. This has been one of my hardest semesters because I have had to be at home and in the hospital doing all of my work online and I miss the classroom so much. However, I am so excited to report that I will be finishing my two classes this spring on time. When I was forced to drop to part time for medical reasons I was stripped of my academic scholarship, and at this point I have not received that scholarship for the 2015-16 academic year, which is going to make attending college much more difficult. However, where there's a will, there's a way. :)
The purpose of this page is to raise money that will help my family and I with medical and travel expenses to and from appointments and hopefully the Mayo Clinic! Funds raised will also be used to cover the cost of any medical expenses not covered by insurance, such as hand controls for driving, any extra costs for wheelchairs or adaptations for that equipment, as well as the installation of safety bars in my shower and the addition of a shower chair or stool. Funds will also be used to hire a trainer to help speed up the training process for Rusty so that he and I can become a working team sooner, rather than later. Some funds may be used for college expense, but only if absolutely necessary. I (ok, a friend of mine set the goal because I was too embarrassed to ask for help) but we made a guess on the amount of money that would be necessary to cover expenses, completely guesstimating what it will cost for medical supplies, Rochester and any other medical travel necessary. I will adjust the goal either up or down, and any money that is not used will be saved for future medical expenses, as CRPS is a chronic and progressive disease, and a portion of remaining funds will be donated towards research for a CURE! Your donations will only be used for meeting the monetary needs of my battle with CRPS and the ongoing treatments that this battle requires.
I would like to personally thank you for your kindness, care and support. It was with the persuasion of many friends that I have set this page up so that I will have the opportunity to seek the medical attention and equipment that I need. Again, thank you from the bottom of my heart for your generosity! God Bless and Thank you.
Sincerely,
Jamie Singleton
No doctor can explain why my body turned against itself, but essentially that's what happened. One day I woke up to pain in my left foot. I thought I had just strained it, but as the days went on I began to realize that this wasn't just a strain. When x-rays didn't show anything I was sent for a bone scan. When the radiologist looked at my foot and lower leg she called in another person, then another because my leg was ice cold, purple/blue, mottled, and swollen. I was also hypersensitive to touch. They sent me over immediately for sonograms of my legs, where it was determined that my vascular system is abnormal, yet "normal for me". This was the first time a doctor told me that I wasn't totally healthy. Soon I saw more doctors, was admitted to the hospital in Topeka, had an angiogram and nitroglycerin injected into the vascular system of my left leg to restore blood flow, and eventually I went back home, without any answers. Because I was 17 (a pediatric) it was difficult to find doctors who would see me, so one morning my mom, dad, and I loaded up the car and drove up to Children's Mercy Hospital in Kansas City where I was diagnosed with CRPS/RSD (Complex Regional Pain Syndrome or as it was formerly known, Reflex Sympathetic Dystrophy). Since that day in March I have been fighting against the fire. A fiery pain that now has a name. CRPS. According to doctors CRPS "is the most painful form of chronic pain known to medicine." The McGill Pain index has CRPS at the top of the scale of pain. Rating it higher than cancer pain, unmedicated childbirth, and the amputation of a finger, toe, arm, or leg without anesthesia. The hardest part about living with CRPS is there is no medicine to treat the pain and no cure for the disease. It often progresses, as it has for me; starting in my left foot in 2011 and as of now, May 2015, four years later CRPS stretches from my toes, throughout my foot and up my leg, into my hip and to just below my chest on the left side of my body. I also have a more mild case of CRPS in my right foot, my "good foot". My left leg and torso is named "Smurfy" because it turns blue and it's a code name for it when I need a break when I'm with friends. In 2011 after heart and seizure medications failed to calm my nervous system I was transferred to North Kansas City Hospital where I have an amazing doctor and many amazing nurses! I had 6 nerve blocks in the fall of 2011, eventually those failed and I heard about a spinal cord stimulator (scs). I had a trial implant in November and then on December 21, 2011 I had my scs implanted. Things went great after that. I could walk without crutches, and I could concentrate at school and I was even able to walk across the stage and received my diploma when I graduated high school in 2012. However, shortly after graduation I started having more pain. We talked about more surgery to work on my stimulator but I decided to wait until December because I was starting college soon. My first semester of college was difficult with appointments, physical therapy, and scheduling my surgery for a scs revision on December 3, 2012. Because I wanted to come back for the spring semester on time I chose to finish my first semester 2 weeks early so I had to take all of my finals in one day! It was crazy....but I did it! The second surgery seemed to be a success but two months later I was having problems with my stimulator again. My doctor and my programmer (for my scs) decided that I needed to have a different type of surgery, one where instead of the wires for the scs being on top of my spine they would take out a piece of my spine and then feed the wire down between my spine and spinal cord. It was a big surgery, but on May 22, 2013 (my 1/2 Birthday) I had the surgery. Things seemed great after that! I could walk with less pain, and I even got the brand new scs system that had a different remote and allows me to have up to 14 programs, or different types of stimulation to try and trick my brain into not feeling as much pain. However, in January of 2014 CRPS took a turn for the worse. It started progressing and my pain was intensifying. My doctors started trying medications, which just made my brain foggy, I had 4 more nerve blocks in March/April of 2014 and since those didn't work I've been trying more medications since then to try and help my pain. In late January of 2014 I had to start using crutches again because I couldn't walk without my leg giving out, or get across campus anymore, even though I have handicapped parking. Since then I've tried lots of medications, pain creams, alternative therapies, and I recently had a 4 day inpatient ketamine infusion, which unfortunately didn't help my pain :'( . I take a menagerie of pills throughout the day that allow me to get out of bed, and move around on my crutches, but my disease continues to become more painful and also continues to spread as it now affects my right foot as well as my arms, hands and torso. On January 19, 2015 my medical issues became even more complex.( I know, hard to believe!) I now also fight daily to breathe and my heart beats irregularly, skipping beats, adding in extra beats, and going from about 30-40 bpm (beats per minute) to over 150 bpm in just a moment. I have been diagnosed with tachycardia which is an abnormally fast heartbeat, but they can't give me enough medications to fix my high heart-rate because it also bottoms out and goes way too slow as well. Since January I have been in the Hospital 3 different times for several nights each, in the Emergency Room 3 separate times, once by ambulance, and one time resulting in admission to the hospital. I've spent time in the Cardiac Intensive Care Unit, the Cardiac Care Decision Unit, as well as other floors of the hospital. I have two primary care doctors, two palliative care teams, a pain management doctor, a neurologist, and a cardiologist as well as a physical therapist. So, as you can imagine I spend a LOT of time at the hospital and in doctors offices. Because my disease is progressing and causing me a lot more pain my doctors are trying to get me scheduled to go to Mayo Clinic in Rochester, MN to see if there is anything that they can do for me. Currently my doctors are also testing for other autoimmune diseases that might be causing some of my heart and breathing problems as well as making my CRPS worse.
I am not the type of person who asks for help, especially money but I am in need of additional medical equipment including a wheelchair for long distances (Specifically an ultra-light wheelchair that weighs less than 15 pounds because I do not weigh much more than 100 pounds myself). Due to leg tremors and instability in my right leg (my good leg) I am needing to add hand controls to my car so that I can continue to drive safely. There will continue to be travel expenses as most of my appointments are in Kansas City (2 hours from home) and the Mayo Clinic in Rochester is approximately 8 hours from home. I am also in the process of working with my Labrador Retriever Rusty to train him to be an assistance dog for me, so that I can be independent and have the peace of mind that Rusty is there to help me.
With my current state of health it has been impossible for me to work while attending college, and while this summer I may have the opportunity to work for a summer reading program I may have to give up that opportunity to go to the Mayo Clinic, which is very hard for me because I want to work, and I finally came across an organization that believes in me and is willing to look past my disability.
CRPS is a battle happening 24/7/365. It's a battle that gets me down sometimes but I continue to fight because I believe that "I can do all thing through Christ who strengthens me." Philippians 4:13. Although CRPS has continued to take more away from my body....from my ability to sleep (an average night is about 3 hours total for me), to my appetite and ability to eat (I've never been a big eater, but I eat by the clock--when it's lunch time I eat, same with dinner. My appetite and desire to eat basically doesn't exist; my ability to walk, to think and process information, to live an age appropriate life, there is one thing that I refuse to let CRPS take from me: my ability to go to college. I have always loved learning and when CRPS took my ability to run, and many of the other things that I loved I promised myself that CRPS would never take my ability to go to school and to succeed. I went to college straight out of high school, actually graduating high school with 15 credit hours, I went on to Washburn taking 12 hours (a full time load) every semester until the Spring of 2015 when I was forced, due to hospitalizations, to drop to only 6 hours, two classes. This has been one of my hardest semesters because I have had to be at home and in the hospital doing all of my work online and I miss the classroom so much. However, I am so excited to report that I will be finishing my two classes this spring on time. When I was forced to drop to part time for medical reasons I was stripped of my academic scholarship, and at this point I have not received that scholarship for the 2015-16 academic year, which is going to make attending college much more difficult. However, where there's a will, there's a way. :)
The purpose of this page is to raise money that will help my family and I with medical and travel expenses to and from appointments and hopefully the Mayo Clinic! Funds raised will also be used to cover the cost of any medical expenses not covered by insurance, such as hand controls for driving, any extra costs for wheelchairs or adaptations for that equipment, as well as the installation of safety bars in my shower and the addition of a shower chair or stool. Funds will also be used to hire a trainer to help speed up the training process for Rusty so that he and I can become a working team sooner, rather than later. Some funds may be used for college expense, but only if absolutely necessary. I (ok, a friend of mine set the goal because I was too embarrassed to ask for help) but we made a guess on the amount of money that would be necessary to cover expenses, completely guesstimating what it will cost for medical supplies, Rochester and any other medical travel necessary. I will adjust the goal either up or down, and any money that is not used will be saved for future medical expenses, as CRPS is a chronic and progressive disease, and a portion of remaining funds will be donated towards research for a CURE! Your donations will only be used for meeting the monetary needs of my battle with CRPS and the ongoing treatments that this battle requires.
I would like to personally thank you for your kindness, care and support. It was with the persuasion of many friends that I have set this page up so that I will have the opportunity to seek the medical attention and equipment that I need. Again, thank you from the bottom of my heart for your generosity! God Bless and Thank you.
Sincerely,
Jamie Singleton
Organizer
Jamie Singleton
Organizer
Harveyville, KS