We all I think, at some point realize, we take our lives for granted. Frivolous arguments, expensive tastes and living on the internet have proven to be the American dream for many. For just a few moments time though, please allow yourself to peek out of your comfort zone and into the world of Multiple Sclerosis. An illness that affects about 2.5 million people in the world today. 400,000 of those living in North America. The majority of the gender of those affected are women. Women are affected twice as often as men by multiple sclerosis (MS); a phenomenon observed in nearly all autoimmune disease. Doctors, and experts can only agree on one thing, they still do not know why this is the case.
One must note that Multiple sclerosis (MS) is neither contagious nor fatal. The grade of progression may increase over time, but there are large differences between one patient and another. But these are just facts. Sometimes overwhelming and often intangible facts don’t really give us real understanding of what its like to have MS. That is why I took the time to interview Laurel Rose Purdy. A supremely courageous, kind and beautiful young soul diagnosed with the disease at 26. Laurel Rose Purdy is not a fact. She is a living breathing women, who has to face a different set of challenges than you or I on a daily basis. I recently asked her to share with us a bit of her life, her feelings and how things have changed since her diagnosis so that we may get a glimpse past the facts, and into the feelings of dealing with the disease.
When I was diagnosed with MS, I either thought I had a brain tumor or just needed glasses. My vision was out of focus and doubled, and my optometrist recommended an MRI. When I was told I had multiple sclerosis, I thought my life was over. I was 26, an am now 29, so it is still a pretty recent event. My first exposure to the disease was a very close friend of the family who struggled with Primary-Progressive MS, and we watched his health rapidly fade until MS took his life. Ten years before his death, I said I was going to cure MS.
I found that reaching out to other women in my age group with the disease made me feel grounded and a little bit more stable. My anxiety was out of control, every time I had to inject my medication was the true end of the world, and my poor fiancé (boyfriend at the time) just watched me unravel. Joining a support group of young women with the disease really helped me focus inward and be strong, as I could openly communicate any pain or frustrations I experienced.
My outlook about this can be best described by the words of a close girlfriend, who also has MS. When I was first diagnosed, she assured me that “multiple sclerosis is like a snowflake,” as it manifests differently in everyone. Nothing is truer. People tend to respond to the big reveal in terms of what they know about the disease. So, if it is a snowflake for those who have it, it is certainly a snowflake for those who have been exposed to it.
A change in treatment from young people and my friends is 50/50. A lot of people want to apologize to me when they find out. People have to realize that no one in this situation wants others to be sorry or feel bad for us. If we need help, hopefully most of us will ask. I’ve had some really tough times, which is when I reveal my vulnerability and my friends come over to help me walk my dogs. I am lucky to have a great support system, where each person involved knows how stubborn I can be. I haven’t told anyone at my job yet, because oftentimes people will see you through an MS filter despite their denial.
My fiancé, my rock, often reminds me to me remember that I am still myself. I was diagnosed not even a year into our relationship. He assured me that we would get through it. He proposed to me earlier this year and is committed to me no matter what this disease brings us. In fact, just two hours ago, he insisted on administering my medication for me when he is home.
Healing is the hardest thing to discuss when talking about a disease with no cure or consistency. I live with Relapsing-Remitting MS, which is a slow progressing form. But, I don’t know how I will feel on a day-to-day basis. I have been on three different injectable medications (most recently, Rebif), intervenous treatments like steroids and immunoglobulin, among others. I believe in the medications that are out there. The most trouble I have had with the process is facing the courage three times a week to inject myself. Seeing my skin change as a reaction to the medications has been one of the hardest things as well. If I don’t feel very different physically, it’s really hard to have a physical reminder.
Taking charge of my body in the form of supplements and diet helped my anxiety and attachment to the negativity I was feeling directly after my diagnosis. Going gluten-free and dairy-free was a hard adjustment to make, but becoming more aware of what I was consuming and truly focusing on my nutrients and alkaline/acid balance helped me feel in control. I religiously take D3, B12, Alpha Lipoic Acid, Acetyl L-Carnitine, Flaxseed Oil, Primrose Oil, Probiotic, Biotin, Turmeric, Ginger, and Cranberry tablets on a daily basis. I follow through with acupuncture every week.
People will want to ask if any of that is helping. My answer will always be, I don’t know. If I believe it is helping, it will do something. A big part of multiple sclerosis is your mindset and level of stress. The calmer your mind is, the more at ease your body is. The biggest piece of advice I can offer to those of you newly diagnosed is to listen to yourself before anyone else. Everyone is going to want to offer advice on your diet, your geographical location, your form of exercise, and your lifestyle. Do what seems right for you, after you’ve done your own research. No one knows your body like you know your body.
So now, how can one person help? Well I also recently interviewed Chad Graci, who is Co-Chair on the board of the Louisiana MS Society. This Friday, November 15th, the foundation will be having a fundraiser for those with MS. It will feature a dinner, music and an art auction, and promises to be a wonderful evening, in true Louisiana style. Chad has worked tirelessly on this event, coordinating with artists and many more, to ensure that this evening is a fun and positive experience for those attending, and a tremendously helpful experience for those they are fundraising for. I sat down with Chad and asked him about this event:
Tell us how about the foundation, and your/their goals: The Louisiana chapter of the Multiple Sclerosis Society’s goal is to raise money for people living with MS in the state of Louisiana. They do this through the bike, the walk and the annual Vintage Affair party. (avintageaffairms.org)
Tell us how you got involved with the foundation. A friend of mine has MS and asked me to help out
Tell us a bit about the auction and how it directly benefits those with MS: All proceeds go to those living with MS in Louisiana. Last year, the auction and ticket sales raised about $40,000.00
If you are in the Louisiana area please visit http://main.nationalmssociety.org/site/Calendar/1874366537?view=Detail&id=314244
If you are not check out this part of the website to see how you can get involved to help! YOUR CONTRIBUTION DOES MAKE A DIFFERENCE! http://www.nationalmssociety.org/get-involved/index.aspx