The Thing You Think You Cannot Do

It seems like a lifetime has past since I last wrote a post.  I am overwhelmed by the whirlwind of events that have taken place in the past month.  Shortly after posting my Hospital Horrors post, I made another trip back to the hospital.  This was no coincidence,  as I was putting off going back for over a month.  I began experiencing a pain that I have never felt before; a piercing sharp pain that throbbed right below my chest.  This pain was intensified by standing or walking, which interfered with the progress I was making from my spinal compression fractures. 


I always delay my visits to the hospital as long as possibly bearable, but this time was different.  This time I was frozen with fear for the unknown.  Due to my spinal injury, I had not left my house for three months.  Honestly, I had not gone beyond the upstairs of my house for that duration.  Not only was this new pain constant and fierce, but the thought of venturing down the stairs and into a car petrified me beyond any fear I have ever experienced.  My mind kept rushing back to the painful memory of the continuous muscle spasms I encountered that greatly injured my spine in the first place.

I imagined making one false move or tripping over something small that would trigger and awaken that unimaginable pain once again.  I was hellbent on suffering in my bed because the fear of something bad happening disabled me more than my injury.  With some sound advice from someone I had recently reconnected with, I knew I could no longer procrastinate.  Although my raging fear had not subsided, with the help of my family I made my way down stair by stair.  My body was shaking from muscles that have been in hibernation for far too long.  I stepped outside for the first time in three months nothing short of relieved that I was still in one piece, and made my way to another glorious hospitalization.

After numerous scans and ultrasounds, it was only reconfirmed that the inflammation was intense and had not subsided.  This meant that Stelara, the current experimental drug I have been taking was unfortunately not working.  It was time to pull out the big guns and pull the trigger on a potent drug called Tysabri.  Tysabri may cause a rare viral brain infection called PML that usually results in death or severe disability. The odds of getting this are very small and only increased if you test positive for the JC Virus, which I tested negative for (twice.)  You are only a candidate for this drug when all other biologics have failed.  Biologics are genetically engineered therapies made from living organisms, and I have been on every one there currently is for Crohn's; including Remicade, Humira, and Cimzia.  I experienced anaphylaxis from Remicade, hives from Humira, and success with Cimzia paired with a cancer drug called Methotrexate.  Cimzia gave me almost two years of relief until my body became resistant to its positive effects.

As with the other biologics, receiving access to Tysabri is a vicious waiting game.  Due to its potency the wait is even longer, not to mention the time it takes to process through insurance and the lovely pre-determination stage.  Attaining a way to manage the pain was all that could be done for me in the meantime as the days passed by and I got to celebrate my birthday in the hospital!  A handful of nurses came in my room to bring me a card and sing happy birthday, (because I am no stranger to that hospital) with the addition of some benadryl which was the closest thing I was getting to alcohol.  After two weeks of tweaking pain medicine so I would be more comfortable, I was sent home where I am still waiting for my first infusion of Tysabri.

My birthday cake from the hospital

On a more positive note, I am happy to report that my spinal compression fractures are healing!  The first real proof of this was my successful trip down the stairs and into the car on my way to the hospital.  During my hospitalization I realized I was able to walk more freely with less stiffness.  I was informed by the orthopedist at the time of my injury that while I heal I could not bend, twist, lift anything above five pounds or do anything to compromise my back in any way.  This is why I was so fearful and confined myself to the upper level of my house for three months straight.  During this time I was also unable to stand in the shower while my spine healed, and had to sit on a shower chair with the assistance of my sisters.  During my stay in the hospital I was forced to do without the chair or my sisters, and challenged myself to shower standing for the first time in three months.  This may seem minuscule to many, but for me it was a powerful moment that proved I was healing and reassured that life would go back to normal again.

Each day that passes my back is getting stronger, and now I can venture down the stairs and out into the world without fear.  Climbing the stairs is difficult because I am still waiting for my Crohn's to calm down so I can finally proceed with double knee replacement surgery.  I am hoping that Tysabri will be the right key to unleash the beast that resides inside my intestines.  All I wish for is remission so I can accomplish my goals, eat to my heart's content, and gain all of my weight back (+15 extra lbs).  I will never give up fighting because one day this will be a distant memory, and I will never stop believing that everything in life happens for a reason.