But you don't look sick (1st blog post June 26, 2019)

Please as you read this blog understand I do not want your sympathy, just your reading comprehension skills and your open mind as I tell you the journey I’m on....

“But you don’t look sick,” my most favorite sentence.  “I am sick,” my least favorite sentence.  I have NeuroMyelitisOptica (NMO), I’m sure you all have heard about it, right?  Just in case you haven’t I’ll go ahead and explain it with non-medical skills (although I do faithfully watch Grey's Anatomy and Chicago Med).  I usually says it is Multiple Sclerosis (MS) evil cousin.  It actually mimics MS so much it causes many patients to be misdiagnosed in the beginning.  It actually happened to me but I’ll save that story for a later date. 

I’m sure at this point if you are still with me you are thinking, “I’ve never heard of NMO, and may even be considering checking with “the Google” on this disease.  NMO is an auto-immune disease that causes lesions/inflammation on the optic nerve (Optic Neuritis), and spinal cord (Myelitis).  Mine started with my eye, my left eye, it was not fun.

Four years ago my oldest daughter and I were grocery shopping and I thought the grocery store looked foggy/smokey.  When I asked her if she thought it did, she gave me one of those looks like I’d lost my mind.  By the next day my eye was much worse and it really hurt.  Like I said, I am not medical but I have never missed “Grey’s” or “ER” back in the day so I figured my TV medical education could help me to diagnose this as a side effect of Zyrtec.  I know this is hard to believe after reading my medical qualifications but I WAS WRONG.  This was just the beginning of a very long list of tests, doctors appointments and diagnosis, but I’ll save some of that for later.  However, I will give you a little spoiler and tell you I have an awesome team of doctors and an amazing support system.  My neurologist is wonderful and is constantly researching not to mention he answers every text I send (I’m surprised he hasn’t changed his number).  Also, thanks to NMO my kid have become more creative by developing new games such as, “what does that sign say, mom?” or “what color do you think that is, mom?”

Unfortunately, NMO is a disease that tries to crack you.  It takes your eyes, it takes your legs, it takes your bladder, it keeps you in constant pain, it wears you out, it makes you depressed and most of all it tries to make you a different person.  I refuse to let NMO beat me.  No wheelchairs for me, no please pity me thoughts, no I can’t do this anymore and no forgetting it could always be worse.  I know I am blessed and this is just my bump in the road, my story to tell. 

I will say the hardest part for me lately has been depression.  Now I know I seem like a bright ray of sunshine but inside I’m not.  My disease is progressing and the latest progression has bothered me the most, but more so for my family than for me.  I’m still awaiting some test results but in the meantime I’ll write.  My husband (who happens to be very supportive) suggested this blog thinking it would help with my depression and maybe help people understand what NMO looks like for me.  I’m sure by now I’ve made it as clear as mud. 

Tune in to future writings to find out things like, “why a seagull made me duck under the dashboard,” or “why I hate interstate construction walls,” or, most importantly, “why a dollar store mirror has become my best friend”.  I would also love to tell you about my treatments, my fun side effects and what may be any new hope on the horizon. 

I would like to end my first stab at telling my story by saying, “Thank you” for reading and being an avenue for me to fight this evil monster, NMO.