I wasn't driving my Chevy to the levy, but it was like a life altering moment.
The day my Doctor told me I had RSD, I didn't even know what it was. I had never heard of it, and yet that acronym would have such an impact on my life..one I'm still trying to figure out.
Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) the two are interchangeable, they are the same disease. RSD became CRPS, it's such a squirrelly disease, had to pin down. The effects I have can be totally different from another person suffering the disease, but we all, as I have some to realize have one thing in common, the constant chronic pain.
RSD can be caused from something as simple as a bump, a fall, it doesn't take much, but once you have it, it alters your existence. I started this journey with a dislocated knee, and a surgery to clean up scar tissue that had formed around my knee. My hopes were to get my knee back to 100%, return to work full time, and be able to run, hike, bike, play with my kids, get dressed with out the pain. The day I found out I had RSD that dream slowly began to fall apart.
First came the realization that my knee was as good as it was going to get. I would have to figure out how to do the things I wanted to do with it as it, that is if I could get past the pain I felt to do those things.
Secondly, my dream of returning to work crashed down when I was placed on long term disability and had to "mourn" the loss of my job
I wasn't just mourning the loss of my job, I was mourning the loss of my lovely normal life. I shouldn't miss it though, it had already been eight months since I had been "normal", but I was mourning the dream of returning to normalcy.
I was given medication, and no hope for a cure. A hope of remission if..and a hope for some sort of maybe a kind of normal, but nobody could tell me what that normal would be.
That's possibly the hardest thing about RSD, it's day by day, hour by hour, moment to moment. I may feel good enough to walk without my cane, but then I may need a wheel chair. I might try to walk the mall for a few hours, and the next day not be able to leave my bed. Sleep like the dead for a day and a half and not sleep at all for two... I never know, I can't make plans except to go to the Doctors and physical therapy. The constants in my life.
I rail at myself for being broken, and I feel broken physically, mentally, and emotionally, as I try to live with chronic pain...
Day number~ 61 days since diagnosed
Hi, Suzie,
ReplyDeleteLisa from Facebook here... :)
Thought I'd check out your new blog; I started one, too, as a way to work out my feelings and lo and behold, others found me and began to comment! I mean, I know that's how it works, but I didn't really expect to find such support from my little blog - my first effort, too!
I SO relate to everything you're saying here. It's so true and, I think, that because CRPS/RSD is such a specific disorder, that it's hard for people to understand... mind you, any chronic pain is hard to understand; I've learnt that in spades from others whom I've come to 'know' online.
A couple of my readers have CRPS, several others have disorders/conditions/syndromes ranging from Fibromyalgia to mulitiple-disorders which cause all sorts of messy situations.
And I treasure their comments because I KNOW they 'get it'.
So, I'm happy to find you here and add you to my Favourites list... and is it ok if I post a link to you on my own blog page, too, so others can check you out if they want?
Look forward to hearing more.
And remember, although it feels like the day the music died, it IS possible to find your music once again.
And in the meantime, I honour your feelings of loss, sadness, anger, confusion and hurt. You can make it; I believe in you.
Gentle hugs,
Lisa (Different last name on Facebook;) )
Thanks Lisa, I'm glad to connect with you in both places! Thanks for all the wonderful comments.
ReplyDeleteI so get what you are saying here Suzie as I too am on this CRPS journey in life. I too have lost my loved profession and I too have lost what a "normal" life might be. What I do know though is that there is hope and there can be life even though living and dealing with CRPS/RSD pains. Never give in to this beast but instead take baby steps forward in positive ways.
ReplyDeleteGod bless you in your journey,
Belle
"I have CRPS but IT doesn't have ME!"
Thanks Belle, I get it too, the baby steps but when you look at how things have changed it's hard to not feel the loss and the depression that goes with it.
ReplyDelete