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Monday, July 14, 2014

23 years ago this week

This week marks a turning point in my life.  It is not a birthday to be celebrated,  although one could argue it helped usher in the birth of the adult I was to become.  It is not an anniversary to be congratulated for.  This week is more like the remembrance of a loved one passed on.
Twenty three years ago this week I was diagnosed with Multiple Sclerosis.

I was twenty years old and living with my boyfriend, now husband, and completely overwhelmed with a diagnosis for a disease that I had no idea what it even was. One day I was having a great time partying with friends, swimming and boating on the lake and the next day I was completely blind in my right eye.  What the Hell?  After what felt like a million tests, MRIs, spinal tap, weird electrode thingy-ma-jobbies taped to my head, and blood tests, I sat  in my doctors office and he said "You have Multiple Sclerosis"  He might as well have said "you have yadayadayada" because that is what my twenty year old brain heard.

Needless to say twenty three years later, I now know all to well what Multiple Sclerosis is what it has meant to live with this diagnosis.  Live is just what I did and continue to do.  Sure I had some bumps in the road during this journey, but who hasn't. I have had to learn how to deal with doctors and other professionals to become my own best advocate and fight for the care I deserve. I became stronger than I could ever imagine. I had epic meltdowns. I remember one very specific hospital stay early in my diagnosis. Around 3a.m I was on the "steroid march of anger" (more like limp of the gimp to be honest) to the nurses station with my hospital gown all flapping in the wind because they were going to take "THIS FUCKING IV OUT OF MY ARM RIGHT NOW!!!!!!"  "I am NOT doing this push ever again". Of course I would find myself back in the hospital many times after that. I fired my first Neurologist because every time I walked into his office he acted like I was new patient and had no idea who I was after 8 years. On the day of his dismissal he left me sitting in his office and refused to see me, unable to walk, pee, or see out of my right eye because there was an insurance change that his office personnel did not know how to handle. I have gone through many types of medications and endured countless side effects.  I have been depressed, angry, hateful, and wildly jealous of "healthy" people.

 On the flip side I have been able to have some pretty great things happen in my life, like marrying my high school sweet heart and having two wonderful daughters. I run! Not fast or pretty or everyday, sometimes not even every week, but I can still do it and I am proud that I can. I may not have been able to finish my Horticulture degree due to M.S. years ago, but the knowledge I aquired is with me forever. I have a beautiful yard with gardens and loads of wildlife. It gets weedy sometimes because I don't have to energy to clean it up, but I planted everything myself and it flourishes.  I wish I had planned for the time that I had to stop working.  Being "retired" at only forty three years old has not been easy on my ego or pocket book. That part is a work in progress for sure.

 This journey has not been easy, and I am not going to sugar coat my life because it is still very hard sometimes,  but I found a way to make it my own and live my life the way I wanted.  My hope for anyone reading this is that you will see M.S. is a diagnosis that can change your life, but in the end you are still the one in charge. Please don't give into the despair you will inevitably feel some days.  It can get better.





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