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Swimming with the Miller Fisher

So sorry I've been gone for so long. Here's my excuse.

I never thought it possible, but there is actually a medical condition stranger than you, dear MonSter: Miller Fisher Syndrome.
https://www.ninds.nih.gov/Disorders/All-Disorders/Miller-Fisher-Syndrome-Information-Page

On Wednesday, October 31, my son awoke with double vision, numb fingers and an overall sense of unbalance. He persevered, though, and headed out to the bus stop. I uttered a little prayer of positive energy his way and went about my morning chores.

Thirty minutes later, I was  happily tucked into some NaNoWriMo preparation for day one on November 1 and sipping a lovely cup of Yogi vanilla chai.

And the phone rang.

My first thought was that it was my Mom confirming our bowling date. But, when I looked at the phone screen, I saw that my son's friend was on the calling end. What!?

Why was Zach calling me? Did my son forget his phone?

I answered to hear my son reply. His vision was worse and he feared falling in the …

Letters o the Monster: disability woes

Certain that I am preaching to the choir, I am pissed that said choir is the very cause of my angst.


I am pretty certain that several of you have filed for and (hopefully)  received disability due to the MonSter. This is something that I never really thought of as a possibility for me. Up until three years ago I worked every day of the week, participated in community functions, attended exercise class and even did my share of volunteering. 

When I decided to take an early-type of retirement it was not an easy decision nor did I have adequate funds with which to retire in style. Frugality was and is most important. It never crossed my mind that retirement was a representation of  girl weekends in exotic locations, spur of the moment vacations,  fun expenditures "just cause", or lavish shopping excursions.  There would be no mid-life Maserati or time share in my later life future.  But I did hope to take it a little easy. 

Ha!

Multiple Sclerosis does not afford any sort of break.

M…

What are you doing for breast cancer awareness?

breast-cancer/beyond-awareness#1


It is so very easy to fall into the "me" rut of MS. We live with it every second of every day. It is our personal MonSter. As Warriors, we fight to bring awareness to this often unseen disease. We constantly remind the public that there is actually a person behind that brave smile. We fight the good fight. We religiously take our meds, vitamins, and supplements. We cry through painful physical therapy and cringe when the bill collectors pretend to be our pen-pals. I constantly urge Warriors to remember that you are not alone. 

Come March, I will devote countless hours to the cause of bringing serious attention to the MonSter. We represent the people behind the orange ribbon. 

But this isn't March. October is the month set aside to bring greater awareness to a more deadly condition that plagues far too many women.

                      October is Breast Cancer Awareness Month.

        Please take time to read this story behind the pink ribbon.�…

Letters to the MonSter: Gilenya Day 4

Four days in and no side effects or ill results of my new med  journey. On Tuesday, September 25, at 8:45 AM, I swallowed my first dose of Gilyena after undergoing an EKG. For the next six hours my new friend Eric  monitored  my heart rate every hour. with my kitting in my lap and my mother at my side, the time (though it did not fly) moved by fairly quickly.We talked, I wrote, she worked crossword puzzles, I knitted, and we both looked forward to our reward at Barnes and Noble that shined rightly in our future. (The only sunny spot of the day since we also entertained ourselves by watching the wet deluge that fell over our view of the parking lot...with no relief.)

Since Gilyena's biggest fault is the increase of heart activity, we were anxious at the end of each hour to hear a report on my own heart rate. If there was any sign of irregularity I would need to probably extend my stay to an over night visit. Of course that meant that Momma would get to drive my new car (Bonnie) home…

Letters to the MonSter

Dear MonSter,

I would like to blame this on you, but I can see your evil, little head just bursting with pride. THAT's not going to happen.
 No, this was a totally a random, weird, mysterious car malfunction. My son and I parked outside an area pizza establishment to pick up dinner. I went inside to get the pizza, came back to the car, laced the pizza on the back seat, positioned myself in the driver's seat, started the car (with my foot on the brake), and put the car in reverse. There was a horrible thunderous, grinding noise. Before my son could form a question, the car shot back wards into that pole you see in the background. I had no brakes. 

We ended up trying to climb the pole in reverse.

I finally jammed the transmission into Drive and the car took the hint and shot (and I mean SHOT) forward headed toward that wall in front of us. I managed to turn the wheel enough to the left to avoid a head on.

That's what happened to the side of the car that you see.

The air bags activ…

Gettng a new medical treatment

https://www.healthline.com/health/multiple-sclerosis/managing/transition-new-medication#1


Because I had no idea what happening to me nor did I even know what the letters MS represented, when it came time to begin medical treatment, my limited knowledge forced me to conform to whatever course of drugs put before me. Beta Seron, a self-injection, came into my life not long after my diagnosis. The only other two options mentioned were Copaxone and Avonex, both also injections.

I didn't know the difference. My foggy head was full and heavy with information overload.  Willing to do whatever I was told to do, I learned to stick a needle into myself, keep an injection site map, and only cry in private. Initially I had to manually inject myself, but eventually Biogen came out with an automatic needle injector, which truly made the process less difficult as long as I didn't jump at the noise the injector made upon activation. I even go excited when, after a couple of years, the rather d…

9/11 Where were you?

Other than in March do I post multiple times during the week, but during my morning perusal of other MS blogs, I came across this very timely blog post. It reminded me early in the morn the significance of this very day: 9/11.
Any major event of disaster prompts us to reflect on the basic question of "where were you?" There is no doubt that you know very well where you were when the planes hit the Towers.
 Standing behind my podium in room 310 at Miller Junior High School, I looked up from my testing manual to glare at the intruder who opened the classroom door. I was giving a test. My students didn't need any distractions.
That didn't stop the neighboring science teacher who came directly up to me and whispered in my ear "The Twin Towers have been attacked. Meet in Steve's office next period."
I struggled to keep an unbiased face and continue my teacherly responsibilities. Several of my students were related to first res-ponders, fire fighters, and Nationa…