A New Pair of Pants

I have very much appreciated everyone in my life.  Words that constantly ring in my ears are "call if you need anything".  Those are such precious words to me.  The song Lean on Me plays over and over in my head some days.  I often hear it and become tearful.  Why?  I will tell you why... When you become chronically ill, isolation just happens, you become more vulnerable for abuse, and depression, and you grieve.  Leaning on friends during this time is so important. But, where are they?  They go on with their lives, that's where they go. Most do not understand what it's like to be chronically ill.  If you try to educate them, lets say post about it on facebook, then you often get called out for "trying to get attention".  If you post about how you are feeling, you get called out for "complaining".  It's a lost battle.  People expect you to be able to do the same things you once could do.  There are very few people who und...

There have been many times that I have been called a hypochondriac.  Due to my incessant need to know what was wrong with me.  During the time period from approximately 2010-2016.  I struggled knowing the names of the multiple diagnosis I would come to have and during those times I was injured and  diagnosed with even more.  One of the problems with these diagnosis are the rarity of them.  Arachnoiditis is  recognized by the National Organization of Rare Disorders.  The link is as follows:  NORD-Arachnoiditis  is on the list of rare diseases. It started in 2010 when I began having "back pain", I started having treatments from my sister who is a Chiropractor.  When she felt it was beyond her scope of practice she sent me to the Core Institute to be evaluated by an Orthopedic Surgeon.  I had an MRI and xrays and was told they did not see anything "abnormal".  By this time it was 2011, I had been on pain medication for over...

January of 2017 I started to receive Botox injections into the pelvic floor muscles.  These would be done as a surgical procedure at St Joe’s hospital under general Anesthesia by Dr Michael Hibner.  These injections are meant to relax the pelvic muscles that are in a spasm.  The first go around I as extremely nervous. I was becoming more and more allergic to tapes and adhesives and it seemed they were using them on me each time I went to the hospital, just being careless.  When I arrived I told them immediately of my allergy, although it did not seem to help, I still ended up with tape and adhesive on my body that time.  The Botox took place, I went home the same day, I remember going over and signing the long list of side effects that could happen, but I was hoping none of those happened to me. Once again, we are dealing with mature issues, if you can’t handle reading them, stop now. I have had to handle every single thing that has happened to me without givin...

Throughout the past few years I have been blessed with some very helpful, compassionate, understanding friends.  I have also had to bear the hurt, rejection, and sometimes betrayal of those once closest to me.  About a year into my ordeal, I would come to understand just how chronic illness would impact friendships and become peaceful a year or so later with learning to be alone.  I was always a social person, the first to create an extravagant event at my home, invite 60-80 guests and make "special treats" homemade.  This, I could no longer do.  I had a history of being "fun", "life of the party", I used to enjoy the occasional bottle or two of wine, and the crazy events that arose from them.  Lots of memories had been made over the years within my group of friends.  My health no longer allowed me to be this person, the pain put a stop to the fun, no doubt.  One thing I could still do was give.  When I was invited places, I still offered to...

I waited November 2016 to June 2017 for Dr Kaibara to make his decision to do the 3rd surgery to correct the Bertolotti's syndrome for the 3rd time.  I had to stop working the Fall of 2016 as I was physically unable to get around any longer.  The driving had flared up the Pudendal Nerve again causing the Pelvic Floor Myalgia (Spasms).  My pain was through the roof. The L5 Vertebra had grown through the Sacrum/Ileum on the right side for the 3rd time.  It had been explained to me it was due to the bone graft used by the Orthopedic Surgeon that had Reabsorbed (disintegrated) and allowed it to happen again.  My visit to the Mayo Neurosurgeon, was just for a second opinion in November of 2016, but the imaging had showed some things that now needed to be addressed.  The pelvic xray showed Chondrosarcoma, how did this come up again?  I thought this had been ruled out?  It was always on the back of my mind.  In the same xray, I now had severe degene...

To say I have struggled through some of this is an understatement.  I will share with you just a few of the memories that really stand out.  I have already shared "the night of terror" and how I was treated by a supervisor at work, nothing could compare to those.  As time went on, other situations I exposed myself too, started to make me aware that I was different.  After I was injured in the second surgery and had difficulty walking, I had been invited to a birthday party of some friends.  I always like to give special gifts so Phil and I went shopping all day to make sure the gifts were just that...special.  I made up a couple special baskets for my friends.  These were friends of many years.  This was one of the first experiences realizing shopping had become a great difficulty.  By the time I had got to the party, I was unable to walk, and my pain was at it's highest from shopping all day and using my legs. I was so excited to give my s...

Throughout my ordeal I have not only used medications to manage my pain, but many other non-pharmocological interventions as well starting from the very beginning. Working in Palliative Medicine, I had access to some great knowledge in regards to the tools used in pain management.  I knew medications like the back of my hand, but I also knew other tools to help distract the mind when it came to acute and chronic pain.  I have tried most of these "tools", and I often get slightly frustrated when someone says "have you tried"... or comes to me with their latest and greatest "cure".  First of all, their is no "cure", second of all I have spent hours upon hours tending to my pain, and researching options that were the best for me and my condition.  I have reasons I can and can not try certain things.  Physical Therapy has never been an option, as movement required of my legs or being on my legs only causes inflammation in the lumbar spine thus making...