Hi! My name is Michelle Bradsher, and I was diagnosed with Multiple Sclerosis on October 1, 2009. I am a former television news producer and current PR / Social Media learner. I say learner, because this awesome world of social media is constantly changing. For anyone to call themselves an expert would be ridiculous, at least I believe…but I digress.
I am starting this blog to help others diagnosed with MS find answers and talk to fellow patients on their own terms. If you are reading this, you are either one of my amazingly supportive friends or someone who is either diagnosed with or cares deeply for someone who has MS. I’ll be honest, being diagnosed with a lifelong autoimmune disorder stinks. The uncertainty the future holds is absolutely unfair. But it’s better than some of the other diagnoses out there. And isn’t everyone’s life uncertain? (Hey, it’s a positive day! I live on a roller coaster, too.)
Through this blog, I hope to pool together as many resources for you as possible. I hope to provide a sounding board for you – whether you have questions, want to compare symptoms and treatment methods or just when you want to let it all out. Why am I dedicating my time to this?
Full disclosure: I am starting this as a Master’s Project in my course of study in Interactive / Social Media at Quinnipiac University. I am also passionate about MS information. Why? Quite simply – because when I was diagnosed, I could not find the answers I was looking for. I still don’t have all the answers. I read every day about new treatments, debunked myths, gluten free diets, holistic treatments, brain angioplasty, shots, oral medications, symptoms, heat-related factors, stress triggers – the list is endless. And overwhelming.
Speaking of overwhelming…when I was diagnosed, I felt I had no where to go. I was not ready to make the drive to the nearest support group. I was scared to death of what I would find when I got there. People in wheelchairs, on crutches, gazing off into the distance with loss of cognitive abilities. It took me MONTHS to get up the courage to go to a support group, and I’m a pretty quick adapter. I overcome easily. Not this time. Not with this diagnosis.
I wish when I received the diagnosis, I had been better prepared for what lied ahead. Instead, my neurologist came into the room, said, “You have MS.”, lightly touched my leg as a gesture of support as I cried, and left the room. I went online, bought books, searched for chat rooms. What I found was that nearly everything written about MS was authored by neurologists, psychologists and the like. I’m a smart person, well-educated and well-read. Still, I didn’t know what the heck was going on with my brain. Everything I tried to read seemed to speak above me – in neurological terms. I did not go to med school. I was a journalism major. I was confused by every resource I picked up.
Even the chat rooms were sponsored by pharmaceutical companies and monitored by specific drug users, like Copaxone. The journalist in me knew that, while these chat rooms were filled with people just like me, all diagnosed with MS, the message was being monitored by specific drug makers. That didn’t seem all encompassing to me. Not to mention, I couldn’t see the person I was chatting with. I found myself envisioning each person in the chat room as being in a chair, lying in bed unable to get out or with some inability to speak verbally. Please, no offense to those of you who are affected by MS in those ways. I am sure you understand, more than anyone, the fears a person goes through when diagnosed.
I hope to use what I learned (or did not learn) through my initial diagnosis to provide you with a variety of resource options. Maybe a chat room is your preference. That’s great! I’ll provide links to various chat rooms for MS patients, caregivers and family members. Maybe you’re like me and you want to see the people you’re talking to – but you’re not quite ready to be in a room with those people, unable to easily escape when you are uncomfortable. I’ll set up skype sessions with other MS patients – so you can see for yourself that most of us live normal, happy lives without the use of physical assistance.
As MS Social grows, I hope to offer you a place to go to find answers; to seek comfort; to figure out that you’re not alone.
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Welcome to MS Social! We understand. We get it. We are here to help.