I was a wide eyed, self declared brat who in her 20′s thought she was invincible. I worked too hard, I definitely played too hard and up until the moment I realized my life had changed, I always thought I could fix anything. I was a people pleaser, control freak and a perfectionist. I curse myself now that I didn’t get a life insurance policy earlier when I was a super hero.
I was travelling through Europe the summer of 2008 with a close friend. I remember the day…the sun was shining, I had just bought a new purse, we were in Venice, Italy. Then my right forearm caught on fire. It felt like a bad sunburn but it wasn’t red, it had no rash. I was confused. We ran to the “farmacia” and I lathered an entire bottle of aloe vera on my arm. Nothing helped but I refused to miss gelato and our group so we trekked on. The next day the pain went away and I was once again invincible. An entire year went by and every time I felt stressed out or tired that burn would show up. It moved to a new place on my body each time but would disappear again by the next day so I never saw a doctor. Besides, what would I say? My body is on fire but I see nothing?
Finally in the summer of 2009 I went in for a routine check up. Turns out a lot of women saunter around with bladder infections so I was put on antibiotics. Unfortunately, I had a bad allergic reaction but with the standard inflammed ears, swollen throat and vomiting, the horrible burning returned except this time it was my entire body. Once the symptoms from the reaction went away the burning never left. Finally my GP flagged a serious concern. Now, I have to mention that at this point it was 30 degrees celsius outside so no one noticed that I wore very little clothing but the truth is, even the dog brushing his tail by me set me off in a scream similar to a bad slasher flick. Being in Canada and all, I had to cold call myself into a MRI (which I finally found a cancellation for at 3am) or wait 6-9 months for my appointment. Then I had to cold call myself into a neurologist or wait the same amount for one to read the MRI. My American friends always seem so envious of our universal health care system (thank you Michael Moore for painting such a beautiful picture) and up until this moment I was very proud of it too but since I’ve really had to rely on this system, I’d vote NO with conviction. Anyways, the first neurologist didn’t see lesions on my MRI so he flat out said I was crazy. The next neurologist thought it was leftovers from the allergic reaction so finally in a desperate state I found naturopathic solutions. I hate needles but I was that desperate I tried acupuncture and it worked…for the short term.
I love high heels. Yes, even the most expensive heels still hurt but geez, they look fantastic. I have a pair of Cole Haans, leopard print with Nike Air in them. I know, crazy they make those, right? It was September 22, 2009, the same day as my niece’s birthday and I always remember the shoes because they later become a goal. I got out of the subway system amongst the crowd and within the 2 blocks walk to my office I had this awful sensation go up both my legs at the same time. It felt identical to your foot falling asleep, except I was walking and I hadn’t been sitting before that. Maybe it was cold, maybe these shoes are really bad for me, maybe I shouldn’t have gone out to a film festival party for so late the night before. Just as quickly as the feeling happened it passed so I thought nothing of it and carried on to work. It wasn’t until mid afternoon that I realized I hadn’t moved from my desk all day. I hadn’t even felt the need to go pee. When I tried to get up it was as if I had lost control of the bottom half of my body. I should have gone straight to the hospital but I didn’t. Truth be told, I hate doctors or rather, I hate people touching me, so I taxied home, ordered a pizza and waited on the couch for my fiance. Another hour went by and I had to admit to him that I probably needed to go pee except I didn’t know for sure. He gave me this odd look or the TMI face and when I tried to get up I toppled over. The next 12 hours were a blur in the ER. I had several doctors perform neuro function tests, several MRIs, evoke potential test and even a spinal tap. I was checked into a room with a cranky roommate and they even took my blackberry. It took a week to get out of that hole. The nurses were nice but transverse myelitis sucks. I wanted to play with my dog, go to the movies with my fiance, finish the projects at work. It took almost 2 months of hard work to walk again. If I hadn’t been so high on the painkillers I probably would have been really scared. They sent my blood to the Mayo Clinic but it came back negative for NMO.
Months went by but then the spasms happened. I called off our destination wedding in Mexico. Spasms are 2 minutes of hell. I’ve even blacked out from the pain. I gained weight from the steroids but I never noticed because I was so confused. I even lost my job so I lived off of credit until I figured out what was happening.
It was now January 2010. My fiance was called to Haiti to cover the earthquake (he’s a journalist). I promised to hold the fort down but the day after he left I suddenly lost vision in my left eye. I wear contacts so I actually thought I damaged the eye because it didn’t hurt. Since I had a doctor’s appointment on Tuesday I thought to just wait the weekend. When I saw my specialist and told him the symptom he panicked. I didn’t know why everyone was making a big deal. No one laughed at my bad jokes. I was rushed to the ER. Our contractor called that he could start renovations on our bathroom earlier than scheduled (tomorrow!) and could he please start. I called our rental property to arrange the change in date. My sister went home to let the dog out since I was apparently spending time in the ER that day. I still didn’t get what the big deal was. My fiance called – wanted to know why I wasn’t at home. I know his job is stressful so I told him I was out with friends. All alone in a bed in the ER I talked to myself to keep it together. Then my (new) neurologist walked in. They aren’t known for their bedside manner by the way. In 2 sentences he diagnosed me with an optic neuritis attack and subsequently, Devic’s, put me on steroids and sent me home. I took a cab home and let myself in to the greeting of our dog. I was confused. What just happened here? So I googled naturally! It took me 2 minutes to realize this was definitely not a good thing but I had to pack and move us out before tomorrow morning. So blind in one eye, I did. It wasn’t until I (half) saw our photos on the wall that I suddenly burst into tears. How was I going to tell him that today I was labelled with a disease? How was I going to make this move happen, right now, without asking for help so no one clued in? Did my life just change? Trying to drown my tears I got into the shower, but the water beating down on me just made my skin burn more, so I cried harder. What just happened?! That’s when my sister found me. She had let herself in when the hospital told her I had already left.
I managed to make that move happen. Our new bathroom is my favourite room in the house. I found a way to tell my fiance (who is now my husband) the truth when he got home. I’m always surprised by my own strength and I think NMO has made me into a better person. I sent an email to everyone in full disclosure and I’ve always been surrounded by the most amazing support network – it just took NMO to realize that. With the right medication, my vision in my left eye came back, the spasms went away and my back pain and burning skin are manageable. But now I live with NMO. It’s not who I am but it is a part of me. I made the decision to move forward in life, challenge myself everyday and to find the positive. I sometimes worry that another attack is just around the corner but then I get distracted by all the things I want to accomplish. I remind myself to make my body #1, eliminate unnecessary stress and to still always have a good time. Oh, and I wear high heels again, especially my favourite leopard print heels.