Hi – I’m Ellen and this is my story. You can say I was a “normal kid”, even though I’ll admit to being super clumsy. I always had a funny story to tell about times I had hurt myself including breaking my arm from a fall that happened while waiting in a checkout line. But, I never experienced anything like the pain that developed in August 2009 when I was 14 and still continues to this day.
I would love to say it started on a dark, stormy night in the middle of winter because that sounds like a cool beginning, but it started right out of the blue. I was on vacation with my family and we were visiting the Kennedy Space Center in Orlando, Florida. My older sister Gemma and I had just gone up and down 3 flights of stairs to see the space shuttle Discovery which was to be launched the next day. I was walking to a picnic bench to grab something to eat when all of a sudden I felt a twinge of pain in my right knee. At first I thought nothing of it since I had experienced some severe growing pains in the years prior. By the end of the day my knee was hurting pretty bad. The pain subsided the next day, so I thought I has just climbed too many stairs. When my family went on to see all of Disney World in a day (I don’t recommend it), I could hardly stand at the end of the day from being in so much pain.
I came home and within a couple days, I started at a new High School. In a typically clumsy moment, I slipped on a grape in the hall and landed straight on my knee. The pain started to get worse each day, but I just wanted to ignore it with all the worries of starting a brand new school without knowing anyone. By the end of September, I couldn’t handle the pain anymore so I went to my doctor. He told me I had a serious injury and put me in a full leg brace that went from my hip to my ankle and locked my leg so I could only move it from zero to fifteen degrees. What followed was that I was sent for lots of X-Ray’s, then bone scans, lots of blood tests, and eventually MRI’s and CT scans and ultrasounds. I went to specialist after specialist but all the tests and doctor visits came up with nothing. How could it be that there was nothing wrong with my knee? By this time it was the middle of November and I could no longer go to school or even get off the couch. My crutches had been replaced with a wheelchair.
My pain level at that point was so severe that I was severely depressed and I had contemplated suicide. I hadn’t had a good night sleep in two months due to the pain.
Finally, my situation became so desperate that my parents took me to the ER at Children’s Hospital and we waited 6 hours for someone specific to see us. An orthopedic surgeon resident finally came and made me bend my leg to 90 degrees for the first time in 2 months. My leg turned a near black colour, then purple, red, orange and finally back to a normal skin colour. My foot was so cold. The colour changes and the coldness were enough for him and his boss to give me a diagnosis of CRPS (Chronic Regional Pain Syndrome).
Since I know had an official diagnosis of CRPS, I was lucky enough to be seen within a week at the amazing Pain Clinic at Children’s. This place is a very rare gift to our Province and it is the place where the condition was fully explained to me. The explanation, in simple terms, was that the nerves in my knee were sending the wrong signals to my brain. These faulty signals caused the colour changes, the extreme sensitivity to touch (I couldn’t wear anything other than yoga pants for 5 months), the stabbing and constant burning in my knee and my inability to bear any weight.
However, at that appointment they found a lump in the back of my knee so I had to go through all the tests again and see an orthopedic surgeon. The test came back with just a buildup of fluid that wouldn’t do any harm, but by this time it had been another two months and it was late January. I was on extremely high doses of medications that caused crazy mood swings and made me completely unable to manage the limited amount of homework given to me by my teachers to just get me through the year. I had an amazing Hospital Home Bound Helper who was so kind and helpful.
As soon as I got the all clear about the lump, the hard work really began.
I had been in physiotherapy since October, but now with a diagnosis I had to start building up muscles that had nearly completely disappeared, along with the ability to even bend my knee. I went three times a week and gave my Physiotherapist thousands of death stares and shed many, many tears. In February, during the Vancouver 2010 Olympics, I started a series of Lydicane Infusions at Childrens’s to help my constant 10 (highest in pain scale) pain decrease so that I could recover more quickly. These were a life saver and I started seeing real progress.
April brought a month of success with me taking my first steps in 6 months and me starting to do some part time school instead of sitting at home watching Friends and The Ellen DeGeneres Show every day. I went down to one crutch for support and all seemed to be going well. However, I had some breathing problems due to all the medications I was on and was hospitalized for 3 days. The physiotherapy kept on going and going and I wasn’t going to give up.
In June I was on a cane and finally started to decrease all the medications which I fully came off in November. My cane disappeared in July and for the first time I could walk by myself with no support in nearly 10 months. I continued physiotherapy for another year until I had full functionality in my knee.
Even though I am now able to return to my normal activities and I am even able to go backpacking through mountains like Garibaldi and Juan de Fuca which was something I never thought I could do back in 2010, I have yet to have a pain free day in nearly 3 years. To some people it looks like I am huge complainer, and a wimp with no pain tolerance, but this is a CHRONIC PAIN CONDITION.
The fact that the Pain Clinic has such a huge waiting list of kids needing help is so sad because when you are in constant pain, you can’t explain what you feel every day to most people. It’s just too hard for them to comprehend.
Despite everything I have been through, my journey has not been all bad. It has given me lots of opportunities that I never would have had otherwise – including this one to reach all those kids that are still in pain. I want them to know and realize there is help and understanding out there. Please help us share the message of how important the Pain Clinic is today!! Without the help I received from them, I don’t know where I would be today. ☺