RSD LIFE – The First RSD Diagnosis
If you missed RSD Life Part 1 you can read it here. As my daughter’s condition quickly started deteriorating, I was becoming more and more concerned. We were both very new to the RSD diagnosis, I mean who is not when they first hear the words RSD/CRPS. I remember sitting in the orthopedic office, after our sixth or seventh visit (and numerous physical therapy visits) thinking to myself “what is going on with her ankle” “why is this not getting better”. Furthermore, I was becoming extremely concerned with the amount of pain she was in for “just a sprained ankle”. I remember watching people coming in and out of the waiting room. There was so many people. It was just like any other visit you sat there waiting and waiting and waiting, wishing the next name being called out of the Medical Assistant mouth was yours. My daughter and I would wait upwards for about an hour sometimes, just for a 10 to 15 minute visit with supposedly the best of the best doctor.
“McKenzie” the medical assistant said and in we went. Now, I expected this visit to be the same as all others. “Give it a few more weeks.” “Continue with the PT and let’s see how it goes”. After all, that is what we have been hearing for awhile now. However, this visit was different. VERY DIFFERENT. It took the orthopedic all about ten minutes to come in and give us the deathly three letter acronym RSD. “RS..what?” I said. What in the world is RS… whatever it is. “Reflexive Sympathetic Dystrophy” says the doc and “we are going to start with sympathetic nerve block shots”.. “We will do a series of three and take it from there…. Any questions?…Have a nice day..” And this was the ten minute diagnosis that we received for a disease that we are battling THREE years later. Let’s do the math 10 MINUTES (diagnosis) + 3 YEARS (ongoing progression)= We need a better health care system!
Now, after hearing my daughter had RSD for the first time, was I concerned? No, of course I wasn’t. Why would I be? After all, this was a ten minute office visit and I have never heard of RSD before in my life. So we will do the nerve block shots and she will finally get better and back to being McKenzie again. Errrr, wrong answer. If…IF just one time the Doctor would have taken an extra five minutes and said “this is very serious” the journey my daughter was about to go down could have been ten times less complicated. However, he made it feel like my daughter was a burden to him and he had better things to do in the course of his practice then to answer any question that his patients had.
The above mentioned doctor was doctor number one out of 12 doctors (if I remembered them all) in the course of three years. And I will add, the majority of the 12 doctors did not have a clue how or what to do when someone comes to you and says “I have RSD” even though.. they have great reviews on Google, Yelp or whatever internet search you are using. And just because someone graduates top of their class from Harvard Medical School does not mean they have a clue in how to provide RSD treatment. And they might know how to treat /manage RSD. Which is great, but if they lack time and compassion then what is the point. People with such a monster of a disease need compassion, time, information and knowledge from their healthcare providers. And people who have RSD, need to be told that this is not a death sentence. When my daughter and I first went down this road we came across the most uncompassionate doctors and the most compassionate ones as well. Your Doctor’s attitude makes a difference in your recovery. There have been times where I wanted to physically inflict pain on my daughter’s doctor where it took everything I had not to end up beating the living daylights out of them (which you will hear about in later writings) and then there have been times where I have sat and cried sometimes tears of joy and others just frustration and they would hug me/her and say “I’m not giving up”.
As our story continues on, I will write about all the doctors we have seen, including the dreaded ER doctors. This part of our story is just the very first Doctor that we seen. I could write a novel or more like a horror story with our experiences with the medical personnel we have seen. However, we never gave up hope. We simply moved on to another doctor if we felt they could not help us, or they were judgmental, or did not have the time. Some people called it doctor hopping. I call it making sure my daughter gets the best medical care that I can possibly find. There has been a lot of trial and error along the way, but one thing remained consistent the entire time. My daughter’s strength and will to fight everyday of her life.
WE WILL NOT GIVE UP.
McKenzie Getting Ready to Perform with her German Dance Group before RSD/CRPS
YOU WILL DANCE AGAIN MY BABY GIRL!
Continue reading part three RSD Life – A Parents Care
How many doctors did you see before you had an RSD diagnosis? Please comment in the section below.