Written by Julie Bennett for RSDSA blog.
How and when did you develop CRPS/RSD?
When I was 13 years old I was playing football for an extension out of University of Illinois. They would recruit teens to play for a select team, and then once they started college you would get a full ride scholarship for University of Illinois.
On June 21, 2013 we were playing a football game. I was tackled and landed wrong. The coaches said they heard my hip pop from the other end of the field. The male that tackled me broke two vertebrae in his neck. He now lives in a wheelchair.
My hip ball was fractured, my femur was fractured, the hip joint/pelvis was fractured, and I tore all the ligaments, tendons, and muscles from my left pelvis to my left knee. We were in another state at the time, and did not get home till June 24. By that time I could not sit or walk. I was dragging my leg behind me. My father took me to the ER and after lots of tests I was told everything I listed above. I was told I needed surgery.
However, I choose to not get surgery right away. I hoped to fix it with physical therapy. On Christmas Eve 2013 I went in for emergency surgery, after another fall that completely broke the ball of my hip. The surgery lasted 4.5 hours. I woke up alone in the hospital scared and in pain. I was told in six months I would be back to normal. However this is where things got worse.
Instead of getting better I became worse. The incisions would not heal, the pain way unparalleled. My left leg became cold as if not getting blood flow. I was tested for blood clots, had lots of imaging, and more, but nothing was found wrong. It took three-and-a-half years and seven different doctors, in three different states until I finally found a pain management doctor in Missouri who, after seeing and talking to me for two minutes, diagnosed me with CRPS type 2.
What has daily life been like since your diagnosis?
From 2013-2015 I spent most of my time in a wheelchair. My left leg was too week and using crutches made the pain worse. After my diagnosis, I went through spinal injection, steriod injections, six hip surgeries, nine spinal surgeries, including a spinal cord stimulator that malfunctioned and was replaced with a dorsal ganglion implant. I am on my second drg implant now.
I spent most of my teen years in hospitals undergoing treatments, tests, experimental treatments. Some of those included being in an induced coma and receiving ketemine, spinal injections, immune suppressant drugs, neurological medications, and more. In 2014, I was diagnosed with childhood endometrial cancer and went through chemotherapy. Since my diagnosis, I have been diagnosed with two blood disorders, Fibermyalgia, a liver disorder, EOG (a stomach disease), my eyesight has began to fail, I get sick easily, I have to walk with a crutch, I have complex sleep apnea, PCOS, endometriosis, and POTS. I spent years in physical therapy and aquatic therapy. I lost my dream of being a Marien, however I did work for the Department of Defense for two years. I’m now retired and on disability at 23.
I spend everyday in excruciating pain. I cannot stand to wear clothing for long periods, I’m sensitive to light, simple tasks are hard for me to achieve, and my short term memory is horrible. I’m in doctors offices or treatments at least three times a week. I have over $7000 in medical debt just for this year and I am on 13 medication and six herbal remedies. I can’t do a lot of activity or exercise. Somedays it’s hard to get out of bed. Life is full of pain, mental and physical.
What is one thing you wish those without CRPS/RSD could understand?
CRPS/RSD is considered an invisible disease, so it’s hard for others to understand how much is effected. CRPS is a neurological disorder that is slowly killing off your neurological system and it effects everything from mood, to ability to walk, to think. It is not something that we want. It’s not a dream or nice to have to be retired at 23 because my body is failing me.
What advice would you give to newly diagnosed Warriors?
Don’t give up. This journey is hard and does not end, BUT you need to enjoy the little things. Find something to be passionate about. Don’t neglect your mental health.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
When I was first diagnosed CRPS was not taught in medical schools. Most doctors did not know it exists. Now, it is taught in some medical schools, and it is being researched. There is always hope that help or a cure will be found.
What activities or treatments have helped you find temporary or long term relief?
Marijuana and my DRG implant. They are not perfect but it allows some relief. But most of all, allow your body to rest when it needs it. On good days, do what you can, but never over do it. If you do you are going to feel a lot worse.
Anything else you would like to add?
CRPS is a horrible disease. Most people, even with CRPS, don’t understand CRPS fully. Don’t allow someone else to minimize your journey because theirs is not as bad or the same as yours. Every warrior is a warrior.
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