I check the size again before stepping in. The words, "please, please, please" repeating in my head.
But I'm happy anyway.
It's called Malignant Multiple Sclerosis.
I didn't know anything about it until a fellow MS'er, and someone who I like to call a friend, told me that this is her diagnosis. Malignant. Multiple. Sclerosis.
I had no idea that this form of MS existed. And I had no idea that a person with MS could hear the word's "Actively Dying". Can you believe that! Kelly, my friend, was told that she has one year to live and that she is actively dying. Now let's be real here for a minute. Aren't we all actively dying? I mean, from the day we're born, we're one minute closer to death. That's just how it is.
When I read these words, I was sickened. Why didn't I know this? Why didn't I know that this was a possible form of my disease. Although rare, it is still out there. Still a small chance, percentage, possibility, that she, could be me. But right now, it's not. It's her, and plain and simple, it fuckin' sucks! She is 31. She has 4 children and a loving husband and she has been told to pretty much make the most of it. I know her from the wonderful world-wide-web, never met, never spoke, but I feel an attachment to her. Maybe it's just a bond that many of us share with those who are suffering through some of the same quirks life brings our way.
I asked her permission to speak about her situation and those words, "Actively Dying". I can't get them out of my head. I wanted to let all of you know, that this disease can be deadly. As blunt as that sounds, it's the truth. Did you know? I don't know the facts of Malignant Multiple Sclerosis and I'm not going to pretend like I do.
I talked to my husband about it the other night...
"I want to talk about it on my blog. I can't believe I didn't know about this, why didn't I know? Did you know? (Of course he didn't know.) I want people to know about this. I want them to know that it's not just that people with MS will most likely live a more difficult life, but lucky for them, they'll still live. Unlike other diseases, but that's not necessarily true. Does that make sense? Anyway, I'm upset at the lack of....media coverage there is for a cure for MS. Yes I am more concern now because I actually have it but can you blame me? I mean, how many people actually donate to a cause without knowing SOMEONE dealing with that particular cause. I can't name a person. That's neither here nor there but I want to post something just so people know. Hey! It's out there! Be aware! Am I making any sense?"
That's pretty much how the convo went, he didn't get a word in edge-wise. I have all my greatest thoughts at night. He was nodding off and I went on the rampage. Bitching about the lack of knowledge of what Multiple Sclerosis actually is and what it can actually turn out to be.
I HAVE IT - and I didn't even know. That speaks volumes.
Share what you know with others. Let's find a cure.
Malignant Multiple Sclerosis, also known as Marburg Variant Multiple Sclerosis, is a particularly aggressive form of the disease. Thankfully very rare, this highly aggressive form is defined by its swift and relentless decline to significant disability or even death, often within a few weeks or months after the onset of the initial attack.
In honor of MS Awareness week, I thought I would put together this collage of a few of the wonderful people I have met who are living with MS. A few facts about Multiple Sclerosis...
1. There is NO cure. That's why we must raise awareness to find the cure and save future men, woman, and children from hearing the devastating words, "You have MS".
2. Multiple sclerosis is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be an autoimmune disorder. This means the immune system incorrectly attacks the person's healthy tissue.
3. More than twice as many women as men have MS.
4. Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people.
5. In rare cases MS is so malignantly progressive it is terminal, but most people with MS have a normal or near-normal life expectancy. Severe MS can shorten life.
6. MS is not contagious and is not directly inherited. Studies do indicate that genetic factors may make certain individuals susceptible to the disease.
I decided to do the collage for two reasons. One was of course because it is MS Awareness week but the second reason is a little deeper than that. When I was first diagnosed with MS, the first thought in my mind was, "I'm too young for this shit!" And I know that many people who are diagnosed everyday feel that same way.
I wanted these photo's to show you that Multiple Sclerosis is not biased, this disease happens to everyone. Young, old, short, tall, all ethnicities, all walks of life, everyone. There are no children in this collage but believe me, there are many who are faced with an MS diagnosis at a very young age. The youngest I heard of was only 8 years old. My son is 8.
So for our sake, and the sake of others, do us a favor and make a small donation to a worthy cause. I happen to know someone who's working on raising funds (wink, wink), and you can make a donation directly to the National MS Society on her behalf right HERE.