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Wednesday, July 27, 2016

MS does not remit. Or does it?.

So, the big controversy in MS is whether or not RRMS is an accurate title for my brand of the MonSter. Technically, there is no appropriate title for any form of MS, but I kind of like the hope that relapsing-remitting brings to mind.

Acording to Dr. Payticia Coyle, Founder and Director of Stony Brook MS Comprehensive Care Center, "MS does not remit and the out dated term causes many people to delay taking medication,"

I understand the logic behind her explanation, offered in the the link below' but I fear that changing the name offers a less positive aspect to a horribly negative disease. Sometimes in life, we just have to color the truth a bit. It's a psych game, I know, but we do what we gotta do.

The proposition is to eliminate the word remitting from the title or RRMS. So, now I have relapsing MS. 

Nothing hopeful about that.

In a world of negativity and despair, we need all the positive we can find. No, I do not want to be lied to (our Presidential nominees do enough of that), but I would like hang on to the hope that MS is not my forever friend. Why can't we label the MonSter like our favorite wing sauce? If that is the case, I would order up Mild on a good day. 

I know it sound silly, but at least it creates images of culinary distraction.

Read the article and make your own decisions. Maybe I am over-reacting. Or maybe I am just sensitive to the possibility of yet another part of me being deleted. MS does that to me every day, Deletes something. RRMS has been a recognized part of my life since 2001 and I have finally come to terms with that part of my character development. To change that label would be like changing my eye color.…/ms-not-remit-call…/

One thing about research and discovery is that we continue to research and discover. And it's not all negative.

Check out this blog. When Ian's disabilty deemed him incapable of working, he found a place for his positive spirit. Now, if that is not remitting, I don't know the definition of the word.

Since we're on the topic of positive, remitting forces...Guess what today is?

Ampyra 8:14 is back!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I changed insurance companies (actually reclaimed my PEIA membership status) and I can now afford this wonderful drug again. 

So, we just experienced day one (again) together. 

Well, I must ready myself for the day. I might even buy myself a new knitting needle to celebrate!

Stay cool out there,

Monday, July 25, 2016

Remember Nick Irons?

I AM BACK!!!!!!!!!!!!!!!!!!!!!!!!

And it is obvious to me that any blogging skills I might have owned have totally been erased from memory. This post has taken me nearly three hours to publish, due to technical (computer and me) difficulties. 

I will apologize now for all of the lovely prose that you will not be reading today because it is floating around in cyberspace. Actually, I will congratulate you avoiding that train wreck of gibberish. Let's get to the matter at hand.

July has been a very busy month, but it is now time to take a breath and enjoy the silence. My latest manuscript is in the hands of my publisher, and now we just...wait.

In the mean time...

I received this e-mail yesterday. A few years ago I wrote a piece on Nick Irons, who challenged MS in an interesting way. I think about Nick Irons often, but had basically decided that I would never hear from or about him again. So, imagine my delight at finding this in my jam-packed inbox. 

So, let's revisit my blog post from 2013. I will not make 

you search the archives. Here it is:

Saturday, July 27, 2013

Swim Lessons: The Nick Irons Story

I am not a late night TV watcher, but sometimes I just find it difficult to crawl into a lonely bed when my husband is out of town. Granted, I am blessed with the presence of pre-teen son in the other room, but he's either engrossed in his virtual world of Mind Scape or soundly sleeping. Last evening, it was the former.

So...because the mom in me refuses to bed down before said son is at least pretending to sleep, I did some half-hearted channel surfing. And what a treasure I found.

Swim Lessons: The Nick Irons Story is a documentary chronicling his task of swimming the entire length of the Mississippi River to bring attention to Multiple Sclerosis. He did this for his father, who kept his MS private for many years.

What an inspiration!
Society tends to forget the family victims of such diseases as MS. Nick Irons does not have MS, nor do his brothers, yet this self-less act demonstrates the length(s) to which others will go in an attempt to create public awareness. It's a beautiful thing.

In my YA novel Abby, my main character is constantly plagued with concern for her young widowed mother who has been diagnosed with MS, forcing her to relocate her children to her previously estranged hometown. Abigail writes in her journal:
     When I got to school this morning I noticed signs posted all over the schoolo announcing a new club, Teens Against Drunk Driving (TADD). On my locker was a photograph of my mom taped to the  center with the words "or is it drunk walking" written on it. The picture was taken outside Pap's house and clearly showed my mother stumbling across the lawn.   
     I told you that Mom has something called a "dropped foot" and combined with the every day balance difficulties of MS, she isn't real steady on her feet. Whoever took the photo obviously didn't know this or didn't care. In fact, whoever was responsible for this was just down right MEAN. (page 125)

My own son is absolutely aware of my physical condition and limitations. (In fact, he was fascinated with the DVD instruction manual about self-injection when I began Beta Seron. He wanted to to watch that video in lieu of bed time stories when he was two years old. Have I mention how wonderfully weird he is?) My biggest fear is that I will be an embarrassing burden to him. This is even more important because of his age. I remember how humiliating parents can be to a teenager; and I recall this with an immense amount of shame. My goal is to not compound this portion of my son's normal teen years by advertising his mother's physical imperfections. Sure, I enjoy an adult beverage every now and then, but that is not the cause of my lumbering gait. I can perfectly capable of appearing inebriated on a steady diet of lemon-ed ice water.

My point is that our public needs the awareness that Nick Irons is offering in  support multiple sclerosis and it's affect on family.

Nick has his swim, I have my Abby. We all cope and learn in different ways. It's all good.

And his response to my comments:

Hi Lisa, This is Nick Irons from the Documentary you mentioned. I just wanted to say thank you for the kind words about our documentary, my journey and my family. I am not the type to typically give advice, but....As a son of someone with MS I would say, don't worry that your kids will be "embarrassed" by your MS. Until we find a cure, for better or worse, MS is a part of who you are. Your son will love you no matter what "stupid disease" you have. And if I could suggest one more thing for you...Please don't think of yourself as a victim (of MS or anything else). It seems that you are still leading a wonderful life, with a great kid and published book. You have made the most of your life and MS doesn't deserve to give you the title of victim. All the best -- Nick Irons

July has been very busy. I have practically been glued to the computer screen in order to make my new YA book
purr-fect. My couches are  covered in cat hair, my houseplants are begging for fresh air, and my e-mail inboxes are even infested. I had to literally wipe my way to my desk this morning.

But the month has been a good one (with the exception of a month long UTI (hello, MS).

Thank you, Heavenly Desserts, Clarksburg-Harrison Library, Blackshere Elementary, and East Park Elementary for allowing me to share my books with you this month. Festival season is upon us and I am anxious to visit several. 

Most of all, I am glad to be back with you.

See you REAL soon.
Pinky Swear,

Thursday, July 7, 2016

Frazzled Writer's Month

I apologize to my loyal readers and on-line friends. Final editing for my current novel has taken over my life. 
I will return in full-force after submitting my blood-stained, final manuscript.