About Me

  • Gender Female
  • Age N/A
  • Relationship Married

My Story 0 Appreciate this

Newbie in the grand scheme of things. Diagnosed in December of 2017. My neurologist said I was lucky to be diagnosed so late in life (53) but, based on past medical issues, (Bells Palsy, Vertigo, seizure, and other little oddities that alone did not send up any MS red flags) he thinks I probably had it since the 90's. I had hip surgery in 2015 and things started going downhill from there (coincidence? I think not). I had an MRI in 2016 that said & see neurologist to rule out MS. Well, life had turned the proverbial fan up a notch and I didn't go. In 2017 the $#it hit the proverbial fan and here I am. Hi! So the MS (which I have fondly renamed WTF) has caused drop foot and & drop hand on my right side. Of course Im right handed. I started Tysabri infusions in January 2018 which have stopped the progression but done nothing for any other WTF issues. Ive continued trying to work full time at a Public Defenders office because Im too young to retire (so its not quite THAT late in life), like having my own money (as well as my hubbys) and love my job. I should be at work today but spent my night trying to avoid electrical zingers running down my entire right side (thats a relatively newer, sporadic WTF side effect). After a year of complaining, dealing with FDA regulations and Insurance regulations, Im finally on a medication that helps with the chronic fatigue (unless you dont get sleep). I also have an AFO for my drop foot which isnt very sexy but I can walk - better. Still havent found a magic anything to help with the occasional all over body pain or the weather in Illinois (taxes & barometric pressure, who knew?!). On the bright side, marijuana becomes legal in January. Ive been recently diagnosed with the JC virus so come October (MRI and blood work time) I will probably have to try something other than the Tysabri. Never a dull moment... Im no Pollyanna but I get through each day with self amusing sarcasm and laughter. I try to find a purpose behind every WTF challenge (guys, try hooking or, if you prefer, unhooking a bra with an uncooperative hand). Sometimes I cry, sometimes I get angry, I stress (really bad idea) and I have poor me moments. But laughter really makes me forget for awhile that I have this invisible disease thats trying to change who I am. Maybe I am lucky I was diagnosed this late in life... Its definitely too late to change my attitude!

Interests

Hobbies and other interestsEvent decor details, making event centerpieces, photography, motorcycle rides

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