"Happiness is a Choice." quote taken from an interview of Drew Barrymore by Kevin Sessums

Wednesday, July 14, 2010

The Accident That Changed My Life - One Year Later

So how does one begin the “debut” entry of a blog? Is there a special protocol that must be followed to lay the proper groundwork or to pique the interest of your desired audience? I don’t know. I do think it requires the author to be straight-forward and not worry about who might understand your desire to turn your must intimate thoughts, feelings, and craziness into an online journal. I do hope, however, that for those of you who do have RSD (and/or another auto-immune disorder) and decide to read my blog on at least a semi-regular basis you will at least know that I understand what you are going through. For those who are my friends or family or know someone who suffers from an auto-immune disorder, perhaps this blog will give you a glimpse, a window into our world. I have always believed that life is messy, challenging and full of moments of great learning, insight, love and soul-searching. Living with an auto-immune disorder such as RSD makes life even more so. My goal is to blog daily and it will take a few days to take you on this journey from life as I once knew it to today. I ask those who know the story to bear with me as I educate others. There will be plenty of time to share, explore and discuss what is happening “at the moment” as time goes by.

So why today……why begin this blog on July 14, 2010? Well, this marks the one-year anniversary of an accident that eventually led me to this diagnosis. Little did I know that a freak home accident would change the rest of my life….forever.

So for those who have not been formally introduced to RSD, what is it? Well if I was being completely thorough in my terminology, I would call it RSDS (Reflex Sympathetic Dystrophy Syndrome). Some modern medical experts call it CRPS (Complex
Regional Pain Syndrome). It’s my own personal opinion that both terms inadequately describe the syndrome and I simply just refer to it (kindly) as RSD. Many years ago, RSD was simply described by doctors as “Causalgia” which means intense burning pain accompanied by skin changes. When the medical profession realized that this did not adequately describe the condition, the term changed to RSDS. Honestly, I really don’t care what doctors want to call it; I know it as a disabling neuropathic pain disorder that begins in one region of your body and then, if untreated, usually migrates to other areas of your body which then entirely affects all aspects of your life: medically, emotionally, financially and socially. Have you ever been at a function that is suddenly ruined by an unruly child? RSD is that unruly child and that function is your life.

So how did this unruly child enter my life? Honestly, that is still the big mystery. Most times RSD is undetected and misdiagnosed for a long time because it doesn’t start off as that unruly child; instead it is a sleeping baby that grows into that unruly child. There is some suggestion that this RSD “door” opened almost ten years old, but it was a year old that RSD decided to park its ass in the middle of my life and slam the door in my face.

It was spring of last year and my husband Michael told me that he needed a new suitcase for all his traveling for work. After searching off and on for a couple of weeks, he still hadn’t purchased a new one (this one is too big, this one is too small, this one is too expensive, this one will fall apart too quickly…..on and on). So in hopes to end the search, our sons and I decided to help him find a new suitcase. Lo and behold we finally succeeded. In June, my parents came out from CA and stayed a couple of weeks and, as they always do, they put their suitcases in our master bedroom along the left wall. Just before they went home, Michael had to leave town and came home about one week later. It is customary for me to “air out” his suitcase when he gets home because his closed-up suitcase with both clean and dirty clothing usually ends up with that distinctive odor of only dirty clothing. So after he unpacked it, I moved it to where my parents’ suitcase had been, opened it up and sprayed some deodorizing spray in it. Not thinking more about it, I was doing laundry two days later and after emptying our dryer and walking into our bedroom, I walked right into the suitcase. Okay, “walked” isn’t the right word…..I literally slammed my left foot right into the side of the suitcase. My pinky toe received the brunt of the slam and I did the normal song and dance one does when this type of thing occurs. But being the kind of woman I am, I brushed it off as a bad stubbing of my toe, folded the laundry and went on my day. I remember I went to our community pool later that afternoon and saw my good friend Teresa there and I told her about it as I realized that the nice warm water wasn’t feeling especially nice on my foot. That night, I took a shower, gingerly put some lotion on my feet, put on some socks and went to bed. All night, I was aware that this toe and the entire left side of my left foot were talking to me, but I did my best to ignore it and tried to sleep.

The next morning, then, I was horrified to finally take off my socks and discover that my pinky toe and some of the left side of my foot was literally purple. I called my internist and explained what happened and we concluded that I must have broken my toe. Ice it, elevate it, take some ibuprofen, stay off it and call if I don’t feel better in a couple of days. I did just that, feeling completely foolish about the entire thing. Michael teased me for moving and airing out his suitcase, then decided it was a good idea to put it away in our walk-in closet. After all, you can’t have an idiot like me walking around in our bedroom with a suitcase on the floor; I might just do it again!

By that Friday, I was feeling even more foolish when I realized that instead of feeling better, my toe and foot felt much worse. I promptly phoned my internist again and she told me to come in for x-rays. Sure enough the damage was clear and it was possible that I even dislocated my toe. After a quick referral to an orthopedist that unfortunately couldn’t see me until Monday morning, I was sent home again to continue the ice/elevation/ibuprofen routine.

Monday morning couldn’t come soon enough and the x-rays were repeated. In his opinion, I didn’t dislocate my toe but I broke it in two places and he put me in a sandal-like soft boot. Yes, continue with the ice/elevation/ibuprofen routine. I continued to see him over the course of a few weeks and noticed that even though my toe was no longer purple, my ankle and foot were huge and I had intense burning coming from the pinky toe, the toe immediately next to it and the entire left side of my foot. As time went by, the burning and pain crossed to all my toes, to my ankle and was now shooting up my leg to my hip. It was like someone was lighting a firework from my toe to my hip and then it would go off. By now my breaks have healed, parts of my left foot were either numb or burning and the orthopedist is annoyed that I am having all this pain. Oh, I must not be doing the home exercises correctly or I’m not icing it enough (which was true because now my foot can’t stand the ice therapy anymore) or frankly am just bitching. Finally he gives me the name and phone number of a pain management specialist and tells me that if I don’t feel “better” after a month, to come back.

After realizing that this doctor wants me gone, gone, gone (and just maybe the door will hit my ass on the way out!), I agree with my mom (who’s an RN and an auto-immune sufferer herself) to see a neurologist. I call a girlfriend who is seeing a neurologist for her auto-immune disorder and make an appointment to get a second opinion. This lovely female neurologist is sympathetic, warm and frankly a bit horrified that not only was my foot not cast for the break, but that I hadn’t actually been directly referred to a neurologist when it was clear that not only did my nerve pain never go away, but only intensified as the weeks went by. She immediately puts me on some medication which makes me incredibly loopy and eventually conducts an EMG. After reviewing the results, she is hopeful that the foot surgeon next door can help me and sends the results of my EMG to her. My hope that a foot surgery will solve my problem, however, is dashed when she runs a nerve block test on my left leg and rather than feeling relief, my pain increases. She orders an MRI of my foot and tells me to bring the CD of the images to my next visit. After reviewing the images and discussing the case with her colleague, she tells me that she knows exactly what is wrong with me and surgery will not solve the problem. I am diagnosed with RSD. Stoically, I take the news and I am given the name and contact information of a pain management doctor who specializes in RSD. I am asked to give her the MRI CD and make an appointment immediately. I reach my car, shut the door and begin to sob. I phone Michael who is at work and he tells me that he will leave work and come home. I call my Mom and both of us cry. She stays on the line till I pull into my driveway and wait for Michael to get home. I feel like Hell has walked into my life and it wears a chain around my neck called RSD.


  1. Wow! Thanks for sharing and I feel quite certain that your story will help others as they join you on the yellow brick road. I will pray that the wizard is working hard on relief or better yet a cure for what ails you! Congrats on day one!

  2. What an honest and moving account. Thank you!

  3. I will forever remember the changing demeanor of the Ortho Dr...from gruff bedside manner to soft spoken & caring "I'm sorry" coming out of his mouth as he put his hand on my 10 year old daughter's shoulder. He told us he suspected RSD and had never seen it in a child...told us to call Arnold Palmer Childrens and look it up on the Internet...it was a Friday afternoon and the information online sent me into an emotional tailspin. It wasn't until over a week later that we had confirmation of the diagnosis from a Pediatric Dr. Here we are 7 months after her childhood fall still searching for answers on how to help our little girl. She has been unresponsive to meds, blocks and we've been doing PT since March...pain levels are a daily 9 and hypersensitivity is out of control. We are off to a new Dr tomoorrw about a possible hospital stay with an Epidural catheter and more intensive inpatient PT. School starts on the 9th of August and I'm worried beyond belief. RSD is a cruel Monster...we will knock him out one day...soon...I hope.