Tuesday, March 1, 2016
Day 1: Multiple Sclerosis Awareness Month 2016
MULTIPLE SCLEROSIS AWARENESS MONTH 2016!!!
I am already prepared to be targeted for my ridiculous show of celebration in honor of such a horrible disease. Hear me now: I am not celebrating the disease. I am celebrating the existence of one entire month dedicated to finding a cure, researching the possible extinction of MS, and recognizing the Warriors who struggle with the MonSter on a daily basis.
Those of us with MS celebrate another day on this earth EVERY DAY. This is our month to publicize that fact.
Yesterday I visited my neurologist to discuss Ampyra, the "walking drug". https://ampyra.com/what-is-ampyra?
I did a little walking test to measure my gait and time on my feet without the assistance of my cane. I didn't win any marathons, but I didn't fall down. Dr. Brick peered at me over the top of his glasses and said (in his sweetest southern drawl), "Sure. We can give it a try."
So now I wait to hear from the drug company and my insurance. Life is always an adventure with multiple sclerosis. And that's not necessarily a bad thing. MS requires patience and a positive attitude. Fortunately I do not have any long walks lurking in my immediate future, so I will be pleasantly surprised when my first dose of Ampyra arrives at my pharmacy.
In the mean time, I plan to continue my personal MS Awareness Month 2016 Campaign. From now until the the end of March, I am donating a portion of the sale of two of my books to the National MS Society.
I Have MS. What's Your super Power? is only 80 pages. It is an easy read and offers common sense advice/suggestions for living with multiple sclerosis.
I showed my book to Dr. Brick yesterday at the conclusion of my appointment. I had planned to pitch a sale, but I quickly realized that I needed to gift him instead. His eyes lit up and he promised to read it as soon as he got home. I have another appointment in six months and am anxious to receive his review.
He also volunteered to plug sales from the hospital gift store when I told him that WVU Healthcare Friends Gift Store manager Patricia Antion had only moments prior added my book to her inventory.
Thank you, Pat!!!!!!!!!!!!!!!!!!! There might even be a book signing in offing...
Writing has always come easy for me. My shelves are lined with my collection of personal journals and diaries. I have recorded trips, holiday lists, stepping stones in my son's life, rants of disappointment and anger...and the list goes on. When I published I Have MS. What's Your super Power? I felt like I had finally put my writing to good use and hopefully offered something worthwhile to my fellow MSers.
And I was fortunate enough to have some help.
I do not attend support group and my social life is rather bland, but through the wanders of the internet I have discovered a world of anonymous pals who understand and relate to my journey with multiple sclerosis. Leslie Hillburn, administrator of the Facebook page We're Not Drunk We Have MS, even allowed me to incorporate her essay "My Name is Multiple Sclerosis" as the introduction to my book. The final paragraph in Leslie's piece states:
"In closing, ... the ONLY place you will get any support and understanding in dealing with me (MS) is with Other People With MS."
Leslie is an advocate of community support in dealing with multiple sclerosis and I had admire the fierce protective fortress with which she guards her Facebook family.
My biggest obstacle with sharing my MS in community-type arenas is that my disease is personal. My life is personal. I have been burned in relationships over the years, but since diagnosed in 2001 I have faced the fact that there are very few loyal friends out there. You know what I mean. the phone seldom rings and the doorbell remains silent. I'm kinda relieved to weed out the trusted and true, though. I've never been a fan of clutter.
I tried the support group atmosphere upon my initial diagnosis and I often feel guilty that I ran with tail between my legs from those kind folks.
The members of my particular Blue Ridge Mountain group were (and I hope still are) an extremely kind group. They welcomed me with open arms and shared their words, knowledge, and yummy snacks with me and my mother (she didn't let me out her sight once informed of her daughter's condition). But there was sadness and harsh reality within the room and I just wasn't' ready to witness the ugliness of my new disease.
"Probably the most frightening member of this group was one who appeared the most normal. "Jen" was the young mother of two. She literally bounced around the room, pony tail flying, doing her best to greet every one and monopolize individual conversations. Her excitement over the arrival of someone new to the program and possibly closer to her own age was a visible cloud that followed her movements.
Beneath all that excitement to be there, beneath the wall of her cheerful words, and sincerely interested questions, hidden behind those bright eyes... I saw FEAR." (page 49, I Have MS. What's Your Super Power)
In essence, that group scared the daylights out of me. I think my mother then realized that it was too soon. Too soon for me to face reality in that raw form. I needed to wallow in denial for a while longer until I dealt with my new existence in my own way.
I have learned to deal with the hand I've been dealt. (Chuckle, chuckle, hardy har-har on the weak pun)
And dealing with MS, for me, is to keep that darn enemy as close to me as possible. That doesn't mean I give the MonSter control of the reigns. I just let it think it has some control over my life.
Upon discovering Leslie and her Facebook group, I realized that there were others out there. Multiple Sclerosis Unplugged is another network on Facebook that offers wonderful support and room to vent when necessary.
There is even a phone app that locates other warriors geographically with whom I can connect if so inclined. I am kinda liking the anonymity that technology allows me in developing my "friendships". Mainly because I have discovered that I am not fond of social contact. (I think I have a trust issue.)
Regardless of how and where you find your friends, even as a loner I know that relationships and interaction are necessary.
And WE ARE EVERY WHERE!
For the month of March, I have dedicated my mornings to this blog. 31 days of March: 31 blog posts.
My goal is to offer some encouragement to my fellow Warriors as well as contribute monetarily to the national society that hasn't given up on us.
I Have MS. What's Your Super Power? is available on Amazon, Barnes and Nobel, and Headline Books; and I am not discouraging the purchase of my books on any of these great sites.
For the month of March, though, I encourage any purchases to be made directly from me. One dollar of each sale will be donated to NMSS. I know it sounds like a pittance in the big picture of donations, but every little bit helps.
Please contact me if you are interested in contributing to the cause through the purchase of I Have MS. What's Your Super Power? ($12.00) or my young adult title Abby, ($15.00).
If you want both the adult version of MS and the young adult perspective, we can bundle! Both books for $25.00, two dollars of which will be donated to National MS Society.
I will pay the postage or deliver straight to your door (if you live fairly close to me in West Virginia).
Have a great day!