I was diagnosed at age 12, was told I'd 'grow out of it' and to date, have had 6 surgeries (with possible 7th looming). I've never given up on myself, on research for my condition or on the potential outcomes that have come from each new problem which might have cropped up along my journey. My hope is that with true stories, real feelings (both happy and sad) as well as an injection of humor here and there that I can help someone else going thru similar circumstances.
About Me
- JerseyOT
- In 2012, I had 2 operations back-to-back. It was an excruciating and grueling recovery. I was doing well until about 8wks post-op when I broke my back (T12 transverse process) in therapy. I spent another 10 days in the hospital and a month in an acute rehab facility. I was in a clamshell brace for over 8 months with no improvement. I underwent surgery #5 on 11/20/12 and required a 6th surgery on 11/24 due to serious complications. After spending another month in the hospital, I finally came home on 12/21/12. Recovery has been difficult and challenges seem to pop up whenever they get the chance. My most pronounced challenge are these terrible positional headaches that started in early 2013. I had a prior CSF leak in Nov 2012 however both the neurosurgeon and ortho surgeon believe it's occurring all over again as my brain MRI shows "clear & obvious indications of a CSF leak." I had at least 1/2 dozen consults with various specialists to determine what would be the best course of treatment and since bed rest hasn't worked, surgery is the only option left. Surgery #7 is full of unknowns regarding length of surgery, stay and recovery.
Saturday, January 11, 2014
5 Months Post-Op of Surgery #7
And doing AMAZINGLY well. I am now working 3-4 days a week as LEAD PEDIATRIC OCCUPATIONAL THERAPIST in a long-term care facility for medically fragile infant, young children and teens, the large majority of whom are trach and ventilator-dependent or who have traumatic or acquired brain injury. I see such tragedy, truly of lives cut short, waaaay too short and it makes me stop and appreciate, REALLY appreciate my life, who I am, where I've been, the journey and paths I've traveled and how it has changed who I am - it has made me a better, stronger person for having lived through hell and worse only to come out, by the grace of God, on the other side. I am so blessed, my children and husband and I are so blessed to have one another and I am truly a miracle walking...I thank GOD every day for my life and I wouldn't change a thing in my life as it pertains to my scoliosis journey. It's not over yet. It never will be. I have terrible knee and kip pain and my lower back although fixed (as in, my back won't go "out" anymore) I still struggle every day to be 'normal' and to do 'normal' things. My children (ages 4 and 6) help ground me and they know all too well what the face of pain, REAL pain looks like because last year, they saw me at my worst. I truly believe that the worse is behind me and that from her on out, I can handle whatever is throw my way - because somehow, and only with God, I made it through 2012 alive and not paralyzed. We are stronger than we think, more resilient than we even know and more courageous than we believe. BELIEVE IN MIRACLES.
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