Jaime’s NMO Story – Finding My Happy Place

Posted by: The Sumaira Foundation in NMO, ON, Patient.e, Voices of NMO

I’ve been paralyzed from my waist down three times. I’ve lost my eyesight due to multiple bouts of optic neuritis attacks that have left me with permanent damage. 

I live with chronic pain, numbness, weakness, cognitive impairments, and constant fatigue. Everyday is different. I live with constant fear of losing my ability to walk and see. The heat bothers me but so does the cold. 

I didn’t know I would get this diagnosis. I did everything right. I graduated from high school, went to college, got good grades, served in the military, live on my own, learned how to be independent, got married, and when we were financially stable, we bought our first home and had a baby. Everything was planned and perfect.

We always went to church. We always volunteer and support charities. I worked in the medical field and was always as healthy as can be. Yet here I am, disabled. However, I have strength and gained courage. So here’s my story:

• In 2001, I woke up almost completely blind in my right eye. I was diagnosed with optic neuritis. After four months, my vision slowly returned.
• In 2004, two weeks after returning home from my honeymoon, I woke up with no feeling from my waist down. After almost six months, I was diagnosed with MS. It took months for the feeling in my legs to return.
• For the next 15 years, things were pretty calm. In fact, I got pregnant with my daughter Madeline so I felt on top of the world!
• Despite living with mild symptoms, I pushed the years getting MRIs every 8-12 months, making tons of visits to the neurologist, picking up prescriptions, getting injections, and of course, receiving steroids, steroids, and MORE steroids x15 years!
• In 2015, I once again woke up paralyzed from my waist down with optic neuritis in both eyes. I spent two weeks in the hospital receiving plasmapheresis and of course, steroids.
• After getting discharged, I spent one month at Heinz Rehab Hospital to learn how to walk again. I was in a wheelchair, wore diapers, and fell into a very deep depression.
• The testing resumed – MRIs, CT scans, spinal taps, bloodwork galore! Suddenly, my 15-year MS diagnosis changed to NMO. 
• 6 weeks later, I returned home to my family and continued physical therapy, occupational therapy, and home health until I recovered from the relapse. I was able to start living again though I was no longer able to work.

I have spent the last three years trying to adjust, adapt, and accept this horrendous disease. I live with constant pain, fatigue, numbness, migraines, muscle spasms, and restless leg syndrome (among other unpleasant symptoms). I receive Rituxan infusions every three months plus a variety of pills and IVIG treatments due to being immunocompromised and prone to pneumonia. 

I am 42 years old but some days, I feel 92. Some days, I feel great while on other days, I struggle just lifting my head off of my pillow, let alone get out of bed. But here I am – fighting, advocating, and determined to live my life as normally as I possibly can.

I am writing this from the beach – my happy place. I have no anxiety or pain. I’ve learned that I can be anything I want to be. My body is once again healthy, full of life, and mine! I’m no longer embarrassed of my weight gain due to steroids and other medications. I’m no longer ashamed because I can’t walk straight or as fast as I once did. I am just SO happy to be walking!

Today, I am beautiful, calm, at peace, and free! As I’m sitting here with my toes deep into the sand, my mind is wandering. I’m looking around, taking in the beauty of the sand, ocean, and palm trees. Oh how much I live for this place. I can taste the salt on my lips. This is where I belong. 

To my family – I think of you. To my husband – God, I am so in love with you. To my daughter – you amaze me every day and I thank God for blessing me with you! To my friends – I think of you. And even to my past – old friends, ex boyfriends, and even the one who got away – I think of all of you too!

I will not let NMO take anymore from me than it already has. I will fight until my last breath. God, the sun feels so good.