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Friday, September 6, 2013

Fairmont's First Friday...the last of the season.

Tonight at 5:00, Annette (Bonasso) Rose and I will be signing our books at the Marion County Public Library table. At 7:00 Jenna Won't Sing takes the stage and I can't imagine anything sweeter than listening to my favorite band while sharing Abby with folks stop by to visit. Come out and see us! Good food, great music, fun times!

It's pricey but it's a great idea!


I'm s sucker for anything West Virginian and anything that donates funds to my very own disease and this is cute.

www.thehomet.com

Thursday, September 5, 2013

How about an e-book version of Raspberry Beret for give-away next month? Of course it would be nice if you check out Abby first so that you have a little background; but it is not necessary. Even though my books are actually a trilogy, they are pretty much stand-alone reads.
Don't forget to come to Fairmont's First Friday tomorrow night and get your own collection. Good food, great music, fun time starting at 5:00. Monongah's own Jenna Won't Sing performs at 7:00. Can't wait!

Wednesday, September 4, 2013

     When I was diagnosed with multiple sclerosis, my name was on the  lips of everyone associated with my family, my job, my friends. Tragic news always makes headlines. Sympathy runs rampant and solicitation becomes an expected reaction. As soon as the novelty of knowing someone with MS wears thin, infirmities are often forgotten. I don't really mind. In fact, if my MS is not part of the conversation, I am relieved to not feel the need to make excuses.
     I do not rely upon my disease and am even kind of embarrassed (for me as well as for the interrogator) when I have to explain my cane, my limp, my slurred speech, or my lack of energy. It gets tiresome; but, I remind myself daily to be grateful for being blessed with tehh ability to continue working and to function in a relatively "normal" manner.
     The first advice I was given upon diagnosis was to join a support group. I did. I was mortified. I spent many, many hours planning the end of my life rather than being inspired by the brave stories shared at these meetings. Support group is a wonderful thing for a lot of folks. It just felt like defeat to me.
     The second piece of advice I received was to file for disability. This action would possibly remove me from the work place, maybe affect my insurance so that medication would not be as expensive, and identify me as a certified handicapped individual.
     "Take your medicine!" was another cautionary comment that repeated itself at any given time. The problem with the "medicine" is that as far as I know there is no MS injection or medical activity that can stop MS. At the time of my diagnosis, all meds were injections and still in the experimental stage(s). Conflicting stories of when treatment can cease because it is no longer working circulated in my cubicle of MS acquaintances. A friend fifteen years my senior stopped taking weekly Avonex injections at the age of 55. A much young friend simply stopped injecting Beta Seron when it became too exspensive for her lifestyle and she wasn't impressed with the beta blocking it was supposed to provide. I actually ran out of my own Beta Seron in February 2011 when the snow covered roads did not allow me to travel to the pharmacy. Within thirty-six hours med-free, I had more energy and cognitive prowess than I had had since beginning injections in 2001. My injection site bruises healed and I began sleeping through the night again.
     I am not saying that medication does not help the lapse of time between MS exacerbations; I just know that while still injecting I suffered two exacerbations and with the added sided effects of Beta Seron. Since February 2011, I have no worse without Beta Seron; but I AM more alert.
    This is not a personal attack on MS medications. When I was instructed on my own treatment, I anxiously obeyed the protocol and travelled religiously with my needles and vials. I took my medication regime seriously and felt relieved to have medical science on my side. And maybe the ten years I devoted to MS drugs benefitted me. I will never know. The mystery of MS may never be solved, but I am hopeful.
    Since 2001, I have learned that MS is not a fatal condition. It is the effects of MS that create situations conducive to death. So, in a nutshell, my MS could be compared to the probability of dying in a car crash. There is no cure and fate doesn't allow it to be avoided. My mother has actually wondered if she could have done something early in my life to alter the existence of MS. It's not her fault that my nerve endings are funky. We don't know what causes it any more than I know why my dear friend is in a wheel chair and I am not, or why a former colleague requires 24 hour assistance and I do not.
     It is what it is and I will make the bet of it s long as I am able.
    Thanks for letting me rant.
     Jump in any time you like.

Tuesday, September 3, 2013

Know when enough is enough.


On Saturday I attended the opening WVU football game, as is my resonsibility as a season ticket holder. The day was clear and comfortable; I didn't have to drive (for the first time in a long, long while); I had kettle korn money in my pocket; and I was ready to "bring on the Mountaineers. With that said, I still had to convince myself to get going. My face felt a little drawn (similar to the day I was dianosed with MS) and my dropped foot was demanding notice. I started worrying about walking the distance from the car to my assigned seat (roughly 3/4 of a mile). My anxiety grew when I realized how warm the temperature had become, forcing me to hold firmly to the arm of my husband and lean heavily on my cane.
Because our seats are in the south end-zone directly under the score board, I rarely leave my seat during the game since I am usually only good for one "climb". So, I had that to look forward to. Two hours with no bathroom break, which really wasn't such a big deal with the rising sweat-inducing temps.
By the time the end of the third quarter arrived, I was totally miserable, thirsty, and disgusted with the field performance.  I vowed to leave with six minutes left  on the clock, just so I could stumble my way back to the car and not make the others wait for me. It was rather discouraging to find them all lounging around any way. By this time, my mouth definitely feels palsy, the feeling has left my right hand, my drop-foot is no longer dropped, but dragging, and my dehydrated brain is foggy.
I just wasn't worth it. I don't care that season tickets are ridiculously expensive or that these Saturdays are quality time spent with my wonderful husband. I didn't pay for the tickets and the time and anxiety I spend before, during and after the game is anything but quality.
I enjoy football season and I am a devoted WVU alumni, but my new favorite game is an away game. This Saturday I plan to trek the distance to the garage to park in front of our big screen and enjoy the Mountaineers from my own comfy chair, near my own bathroom, beside my fridge full of cold beverages, and my own kitchen nearby for the occasional snack.
Yes, it will be a good day.
And I don't have to feel guilty about staying home on Game Day.
In fact, that guilt is a thing of the past. I attended Opening Day and, from the looks of things, this is going to be a LONG season for my beloved team. Thank goodness my husband, Mr. Die-Hard, understands and has released me from any commitment I have imposed upon myself. He has give me unspoken permission to be a couch-fan for the rest of the season. Thanks, Babe!
Let's go, Mountaineers!