In 2005, a few days after turning 26 years old, I had one of those seemingly cliched days that I had only heard about but not yet experienced (and honestly hoped not to since they sounded a little too dramatic for my taste). I had a day that changed my life forever.
It was early July and I was out in the backyard with my then 5-year old stepson Jaden and his 3-year old friend Cadence. I was Cadence’s nanny at the time but due to the fact that my car had been set on a fire in a random act of arson (among a string of others that summer) the day before I had no way to get to the family’s house for work and so he was dropped off at our house for the day. It was a warm summer day and the boys were playing. We were in the midst of continuing the renovation work on our house and a brand new front door was propped up against a table in the garage waiting as its first coat of fresh paint dried. The side door to the garage was open and one of our two cats wandered in and then a large crashing noise soon proceeded, followed by the cat bolting like the wind. Hoping the door’s windows weren’t broken I rushed into the garage with bare feet (which is never a good idea, at least in our garage). As I was hoisting the door up and attempting to situate it more sturdily I accidentally dislodged a piece of MDF that was hanging at about eye level. The heavy wooden board fell right onto my bare left foot.
I must’ve cried out in pain because both boys and my husband Mike came running in. I was collapsed on the concrete floor when they entered and my foot was already very swollen and changing colors. I couldn’t walk so Mike carried me into the house. Figuring it was probably broken we soon took a trip to the ER for x-rays. The pain was horrendous. The x-rays came up clean, no broken bones. The doctor said it was just severely crushed and they sent me home with a walking cast boot, since I couldn’t get a shoe on with all of the pain and swelling. If my memory serves right (which often it doesn’t) I think they gave me the usual advice to follow for strains and sprains – RICE: Rest, Ice, Compression, Elevation. Although I don’t think they suggested the compression component given how sensitive the foot was.
I returned home in a lot of pain with my foot swollen a good 2-3 times larger then normal. First my car had been burned to the ground (housing, I might add, a brand new stereo that Mike installed as a surprise for my birthday) and then a tragic accident in the garage rendered me immobile in terrible pain. It was a bad week!
In the days and weeks that followed one symptom, which arose almost immediately after the accident, struck me as very odd and unusual. My left foot was bone chillingly cold. There I was in the middle of summer with as much blanketed on my swollen foot as I could stand in order to warm it up. I tried over sized wool socks, blankets, and heating pads to little avail. The coldness was unbearable and often caused me to wake up multiple times throughout the night.
After 3 months or so of very slow healing and the bitter coldness continuing I went back to the ER to see the doctor that had taken my x-rays. He took another set and again found nothing broken. He then recommended that I see a podiatrist and said that my injury might be neurological. I made an appointment with a podiatrist in town who took yet another set of x-rays. Sometimes fractures can appear later on he said. Nothing new appeared on my films and he told me that some injuries simply need more time to heal. Another 3 or 4 months went by and my healing continued to be very slow. My pain, swelling, coldness, and limited mobility persisted. I went back to the same podiatrist who mentioned very briefly the possibility of my having developed RSD (reflex sympathetic dystrophy) as a result of my injury. (I’ll mention that RSD’s updated name is CRPS: Complex Regional Pain Syndrome but I find that RSD trips off the tongue easier so I still refer to the disease as RSD). He quickly discounted the notion however due to my being too young he said (a sign, I would later discover, that he knew very little about RSD). He sent me home saying once again that I simply needed more time to heal.
It was at this point that I first embarked upon the crucial journey of learning how to be my own doctor. I took to the internet and researched pain conditions, my symptoms, and RSD. The diagnosis he had tossed aside seemed accurate from my online findings so I went to another podiatrist for a second opinion. I was told that I most likely had RSD but that to be officially diagnosed I would need to see a neurologist. After weeks of waiting for an appointment I finally got in to see a neurologist for an exam that took maybe 5 minutes and ended up with the “official” diagnosis of RSD. It had been almost a year since my injury and thanks to my persistence and personal research I finally knew what I was dealing with.
As anyone having gone through any unknown lingering illness, disease, or pain condition know even though I was saddled with news of having a debilitating, progressive disease I was also thrilled to finally find out what the heck I had! It was a relief to simply know what I was dealing with. It’s extremely hard, if not impossible, to move forward and begin to heal if you have no idea what you’re afflicted with. You can only make so much progress treating symptoms and not the root cause.
So, I was almost 27 and I had RSD…now what?