We welcomed HealthEd into our home yesterday to shoot 'a day in the life of a woman with Multiple Sclerosis'. That was the glamorous concept. My life is chaos. So, I have to laugh.
But I was excited to share any awareness that I could. There are huge gaps between the patients and healthcare professionals, and then somewhere in the divide, or perhaps beyond, is the pharmaceutical company.I will speak out and loudly if I can help bridge those gaps.
The first PA showed up at 7:50 a.m. and from there it was non-stop filming and lights and an uber awesome service table til around 3 p.m. It was exhausting, but so worth it. The crew felt like family. We laughed a lot. I fell asleep on the couch somewhere around 4 p.m. and woke up today.
I have to admit, the interview did stir something in me that hasn't been stirred in a while-my PML fears. HealthEd kept drilling home during the interview that I was at the two-year mark of Tysabri infusions. And that my friends, is when shit gets tricky.
Typically, the patients who devloped PML (deadly brain infection) started two years into treatment. I am, precisely, at that mark. The HealthEd interview forced me to remember that I was at crossroads. I am standing in the unknown, and it could take a right and lead me to a garden of healing where I tiptoe through the tulips, or it could turn left (wrong) and lead where no human wants to go. I essentially get mowed down by a MAC truck at that intersection.
The interview with HealthEd ended with a question about my fears, am I afraid going forward, from here. Also, they asked the kicker of all questions-my advice to someone with MS who is considering Tysabri. I always hate advice questions because what is good for me may not be good for you. Think of all of us MS'ers as little snowflakes. We're all so different, we responded differently to different treatments, but we're all beautiful, yes?
I stumbled on the question. I don't know that I answered it to the best of my ability; so, here's my second attempt.
If you have MS, and you have no idea where to start, start with a doctor that gives you options. My first doctor was a bozo who told me take Avonex and that was the end of it. I'm not fully convinced he even knew there were other options out there. Furthermore, he didn't take an MRI my spine. The scariest of my lesions, as far as prognosis goes, are in my spine.
I knew that Tysabri wasn't where I wanted to start. Why? Because it has the greatest risk-PML and dying scraed me. However, after doing daily injections for a year, I knew it wasn't enough to stop the progression of my disease. During that year my doctor kept me abreast of all the recent studies, trying to lift the layers and figure out what patients contracted PML and why.
In that year, I never dreamt I would end up on Tysabri, but I listened anyway. Two things were notworthy about the patients who contracted PML: 1. They had chemotherapy at some point during their lives, and 2. They were positive for the JC Virus.
At the one year mark of doctor-this-shit-is-not-working-help, it was time to reconsider another path, Copaxone, for me, was not working. I didn't feel I was a good candidate for Rebif or Avonex. And so, I was left with Tysabri. My doctor drew blood to see if I was positive for the JC Virus. It came back negative.
I went forward with the Tysabri course of treatment because I've never had chemo, and I did not have the JC Virus. However, I did know that even if I had the virus, I had a good two years until PML might begin. I started the Tysabri the next day.
For me, I knew I was a least likely candidate for PML. I also knew I didn't have many options and I was quickly, losing my mobility. All of a sudden Tysabri wasn't so scary, but rather, it made the most sense. Tysabri changed from a this scary monster of an option, to my last to hope.
Now that I am at the two yeark mark, I am a little more 'aware' of PML again. The fear I once felt when pondering those three letters had dwindled, but the two years flew by. My two year reprieve is up. So now, it is a consideration, but I focus on the unlikeliness.
I try to focus on the hope. The risk of you developing PML is so incredibly low. You are more likely to die from falling out of bed in the middle of the night than developing PML. I keep that thought in my head when I start to feel scared. Secondly, if you are monitored closely by your doctor, you will be fine. Your doctor can tell the signs of PML if he or she monitors you closely.
I am loved. I am well-monitored. I have access to a treatment that is working. Many of my dear friends in South Africa do not have the access. And, I am living a life that I wouldn't be living otherwise, without the Tysabri. I am awake and full and a participant in this life.
If you are considering Tysabri, I hope this helps you with the sordid, wonky, scary, details. Have you tried the lesser invasive treatments first? Have you had chemo before? Do you have the JC Virus? Also, I am infused with people who have the JC Virus. There's that two year safety net, but from there, those patients are monitored very closely. I watch them live and thrive.
I can't live in fear. I learned after my diagnosis that THAT would be my biggest goal, to let go of the fear of possibilities. It was hard. I could lay up all night wondering if I would be in a wheel chair, would I be paraplegic, would I be able to take care of myself? My friend Rainy would always tell me that worrying doesn't fix anything. You can't worry yourself out of a predicament. But, you can accelerate the progression of your disease by the stress and the fear. That is a fact. So, instead, I gradually learned to let it go and to replace it with what I could control. My diet. My lifestyle. My stress levels. My faith.
So, if I can sum it all up to HealthEd and reanswer that question as concisely as possible (Mike, I know you like concise)-No, I am not worried.
I'm reading a fascinating read called, The Woman He loved; The Dutchess and Duke of Windsor and read the most perfetc line, it has been haunting me ever since-Joy is the shadow of sorry.
I live in the shadows of my MS, inundated with joy.
*That's the HealthEd crew minus Bayer :)
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