Once upon a time, on a night in October of 2007, a huge migraine headache hit while out with a friend for his birthday dinner. Throughout the night it became more and more like ice picks were jabbing me in the skull and eye balls, and I had to call it a night after handing out birthday kisses and hugs.
Upon arising the next morning, I found that half my tongue was numb, and the side of my mouth.
Over the next couple of days, that numbness creeped to include left side of face and neck to ear canal, down left arm, torso to top of butt cheek, with the blood in my arteries feeling like ice water.
As a person who is generally healthy pants, I thought, ooooh, is this a pinched nerve? What happened? A primary care doctor’s appointment with a side of referral to a neurologist, I ended up with a dessert that included a MRI and a Visual Evoked Potentials Test (This measures how your eyes respond to light).
A few days later, I had a diagnosis of multiple sclerosis.
On that day, I felt and heard the silence of the world around me, the spin of the rotation of the earth and the energy of everything around me. It was more than surreal, and to this day, I still have no words to describe that moment.
This was the beginning of my long term relationship with the MonSter.
I had no idea what MS was – I thought of Michael J. Fox and of a childhood friend who had Muscular Dystrophy – all these were wrong.
I did a lot of research in the following weeks and learned a lot from my neurologist and my primary care doctor, and stayed away from the spooky places that said “your life is over”.
I started on a path to reduce the stressors in my life (this initial flare came about due to the crazy hectic over the top chaos of my job I know for sure.) I learned to ‘deal’ with it and not ‘care’ as much about the little things. Health was now more important, and this diagnosis, while definitely a hiccup in my life, taught me to do my life day by day and focus on my passions and just do what I can when I can and not let others bum me out.
My disease modifying drug of choice was Rebif, and I started that in December of 2007. Injections were three times a week and were also a scary thing, but I got the hang of it. The side effects, however, became too much to handle, and by September of 2008, I dumped the drug like an abusive friend.
I started to treat MS only naturally with diet, yoga and acupuncture. I also got laid off from that chaos ridden job mentioned earlier, a blessing in disguise. I was able to focus on my passion full time and I embarked on my documentary about MS and my freelance business. I felt amazing.
Eventually though, unemployment ran dry and I could not keep asking parents for assistance. I am an adult woman.
I landed a fabulous job through a friend in March of 2013. It was in my domain of video, film, shooting and editing so I thought I was set. There was, however, a brand new system to learn within that system I already knew – and there was some toxic energy sources from people there, and the MonSter started to stir, stretch and yawn.
Fast forward to April. I walked to the washroom at work and felt that my feet had wadded up socks under them. Over the next few days – numbness crawled up my legs, torso all the way to my arm pits – reaching out to my hands. and to make it even more pleasant (sarcasm intended) I got with the numb, a crushing concrete hug of love.
The MonSter wanted to remind me after six years he was still around.
I was so angry, I needed my hands, I am an editor and a video shooter, and I couldn’t even recognize them as my own. A few times I knocked myself in the face while going through my backpack trying to grab onto something or zip up a compartment. I could not even hold a pen. This was so not cool.
After a few months (that then spanned into about another year and a couple more months), and much conflict with my anti-pharma self, it was time to choose a disease modifying drug again, even though I had become this hard core natural only person. This was not an option anymore – I needed to do a combination of both..
The MonSter was too strong to fight against the stressors of life. and I didn’t have the ability to treat naturally and organically while working 45 hours a week.
I also changed neurologists at this time.
After a heart to heart with the new doctor, whom I LOVE and respect immensely; because he treats me as a real person, not just a patient, I decided to take the plunge and do this drug that scared the crap out of me, Tysabri.
I was, as most of us are, very terrified of the PML risk. After the blood test came back JC Virus Negative (this indicates no risk for PML), my first infusion was April 30th, 2015
I walked into the office, got my identification bracelet, cautiousIy stepped into the infusion room and sat down. I got a little teary eyed – but – then it was ok. The nurses were amazing and as the drug started going in with absolutely no weird feeling – I relaxed.
Afterward, I had this crazy burst of energy I hadn’t felt since before my diagnosis. Energy around me also just ‘felt’ right.
I am one of those people that can kind of sense that something is wrong or right for me by the way my ‘gut’ feels – and i as walked to the train to head home I was filled with very good vibes.
This was the right decision.
July 25th will be my 5th infusion and I can officially say – I am so ok with pumping this drug into my body. After that infusion I will have another blood test to check JC Virus status.
I am confident and hopeful I will remain negative and even if I do go positive down the road I will definitely consider staying on this juice. It beats the side effects of the Rebif and the Tecfidera I tried for a week and a half – and you only have to sit down once a month and get it done.
Pinkies Up! Its a T-Party!
I highly recommend Tysabri to anyone who is wondering or feeling apprehensive. It kind of rules. We are monitored throughout the process and if anything becomes strange or wrong, and if it becomes danger zone – we are taken off the drug.
Today I still deal with the numb hands, mild hugging, and the fatigue stays with me every day. Tysabri does help a little as does the daily Ritalin.
Acupuncture with electro-stim I will keep doing, and maybe one day the hands will come back completely – if they don’t, well, we are the masters of adaptation.
We are warriors.
Enero is a digital media storyteller, living in Chicago where she works as a producer, shooter and editor. She was diagnosed in 2007 with Multiple Sclerosis and while it caused a detour in her path, she continues her focus, co-existing with the MonSter, and even allows it to have its voice now and again in her work. Her long term goals include a series based on living with the “creature”, and how we re-invent the roles in our lives and in many ways become stronger individuals with eyes and hearts that are much more open and wise.