A New Pair of Pants

Now that you have the medical terminology and definitions behind my conditions, it may be easier to understand some of what I go through.   I know that people only understand and perceive what they want too at times, which has made some relationships very difficult for me, even with medical personnel.  I think we all perceive pain and suffering differently.  I have been living with chronic pain now for over 8 years (when this all began).  My tolerance for pain may be a lot higher than someone who is acutely injured.  I live with pain on a day to day basis.  I have used pharmaceuticals very cautiously and non-pharmocological interventions in my desperate journey to defeat this horrible illness.  When I decided to write this blog, I had to think about my intent/purpose.  Well, I have a couple... the biggest one is to educate people on my rare conditions which are becoming more prevalent. As a Social Worker, and Master level Therapist, I am also qualified to discuss substance abuse iss

As time goes on, I am learning to adjust physically and emotionally to my conditions.  With one of those adjustments has come learning how to talk about it.  I have had to think deeply about how best to write this blog.  It seems as though going back chronologically through the series of events might be the most helpful to others reading it.  You have to understand, it has now been over 4 years, so some it has slipped my mind (either poor memory or as a protective instinct). Lets go back to happened...  The orthopedic surgeon damaged the nerves in the Cauda Equina.  I had an MRI a couple days prior to surgery to read "nerve roots free flowing in the thecal sac".  After surgery the MRI read "nerve roots clumped in the thecal sac representative of Arachnoiditis".   I had a Myelogram this year that clearly showed I had Cauda Equina Syndrome.  If that would have been noticed immediately (it is a medical emergency) the damage could have been reversed within the first 2

Surgery is meant to heal, to fix you, you expect to wake up and be better than you were before. Waking up for me was a nightmare, it was absolutely traumatic. As I woke, my legs were extremely painful, I could not move them. I was unable to urinate by myself. I was not thinking clearly, I was confused. My pain was so much worse than it was before, it was indescribable. I was unable to verbalize much of this at the time. The Dr's did evaluate me for a stroke, if I could go back and slap each and everyone of them I would. They were clearly looking in the wrong place. Every single bit of my symptoms pointed to a spinal cord injury, and if, and only if they would have noticed immediately could something have been done. Am I angry? Yes, I was, I have had to go through an emotional/mental healing process. An ongoing one for over 3 years and one that will last a lifetime. I suffered severe trauma physically. I tried so hard to let someone know but nobody listened, that kills

2013... This all lays vividly in my mind.  Phil is having back problems, we take him to my Orthopedic Surgeon.  He is planned to have surgery, the date is tentative at the moment.  I have a family emergency in Michigan and travel to see my Uncle in his last days on Hospice with a 48 hour turn-around trip.  When I return home I have a day to prepare for my husbands 40th birthday party at our home with 40 guests expected.  I am at my best those days, the food is mostly homemade, baking and decorating is one of my forte's. A day later,  I feel my spine swelling, bone pain re-occuring, maybe I did too much or sympathy pains for Phil?  As a couple weeks go on, the pain is becoming more severe, I start with my PCP asking if there is any way that crazy bone can grow back?  His response is "sure, bone is like hair or nails, it can re-grow".  He suggests for me to also schedule an appointment with OUR Orthopedic Surgeon.  Phil and I schedule on the same day, Phil is scheduling s

How it all began... Roughly 2010 I began experiencing lower back pain, concentrated on the right side.  I saw Chiropractors and sought care at the Core Institute which included an MRI. Not much came of these images so my PCP treated the pain with the typical pain medications.  The pain continued as I dieted and lost 60 pounds, took care of my ailing mother who soon passed away, and married my current husband.  I just so happened to pick a name off Google for a close by Orthopedic Surgeon, who's name I will keep anonymous due to legality.  The day I saw this Physician I thought he was an absolute Godsend, this was the summer of 2011, it had been over a year of constant bone pain, becoming difficult to walk, and wearing me down physically and emotionally.  He immediately did an MRI and xray.  The radiologist at Simon Med read the MRI, the Orthopedic Dr did not agree with the findings based on the image and called him immediately to re-read the results.  The Dr explained what the im