Skip to main content

I'm back just in time for my MS Walk

Hello, hello, hello!!!!!

I'm back!

It has been a very long week without my computer. Yes, I know, anti-techie me, I really said that. I never realized how much I depended on my pooter until I didn't have it any more.

I was unable to review books on Readers Favorite. 

I couldn't address emails properly.

I couldn't write this blog and I really, really missed that.

I couldn't play my Facebook games or look up ridiculous trivia for which I only care.

I DID knit a lot, though; which means I binge watched a lot of Netflix (Have you seen The Chilling Adventures of Sabrina?); which means I snacked a lot; which means my jeans no longer fit comfortably...

Oh, well, it is what it is...

Isn't it interesting how all the elements of our daily life often fall into these unplanned yet strategically organized patterns? :Some good. Some not so good.

Well, I find that is exactly how it is with multiple sclerosis. MS is NOT predictable even when we try to force it's awkward shape into our personal agenda.

 I am a planner. I thrive on order and struggle without an agenda. The words "free spirit" are within reach but ultimately send me into a downward spiral  in the absence of exact times and dates.  I need order I need purpose. The MonSter refuses to align itself with my needs.

So, when MS pops up with it's own plan, I kind of get the willies.

Today was the first MS Walk in West Virginia of the season. I was ready to attend, although my participation is not of the walking variety anymore. Instead I take a few copies of my award winning I Have MS. What's Your Super Power? in hopes of making a few dollars; but, I am also there for social connection with fellow MS Warriors. 

My plan was to leave home with everything organized in a manageable fashion so that my hands were not full and I could set up as easily has possible. One large back back holding a dozen books, a water bottle, my wallet, and my phone. Easy Peasy. Of course I had a small table and my rolling walker in the trunk just in case. 

So off I went on the thirty minutes trek to Tugboat Park in Morgantown, WV. No problem.

Until...

I got lost. 

How many times have I been to Morgantown? Too many to count. In fact, this was my second trip this week.

Unfortunately the written directions I had to this particular site, though, were horribly wrong. An hour and ten minutes later, I reached my destination. Although I was much later than I intended, I still managed to have enough time to settle in and help out while displaying my book. Now, I don't know what I was worried about. It was  no big deal to anyone else but me. Of course when a friend asked where I had been, I had to admit that I truly did not know.

Lesson learned? Don't sweat the little stuff. It all works out even when the design is not the one we prepared. So basically I told MS to take a  hike, which is what I watched so many brave folks do today, in the name of the very being that tried to high jack my day.

I met some really good people today and got to talk to many I already knew. Loved seeing Donna, Tiffaney, Sharon, Patrick, Amanda, Chris, Lumpy,  and Crystal, as well as the many others who gave their time to walk for Multiple Sclerosis. What a day...

Even with some negative  vibes earlier in the day, I managed to bring the Monster down.
Wow, that is a perfect description of living with ms. And that is why I write this blog. We all need positive thoughts in our lives. There is no way to describe what I saw today that was not positive. The daughter feeding her mother who could not hold her own fork. The little boy wheeling around a teenager who had no control of her legs. The wife who was walking for her absent husband and the sister who carried a picture of her older sibling who couldn't get out of bed to join the rest of us.  The young man who doesn't know anyone with MS but who just needed a reason to walk.

I say once again, what a day...

I still haven no idea where I was during my "lost" hour, but I want to thank the very helpful folks at that out-of-the-way convenience store (and I mean OUT -OF-THE-WAY) who offered better directions in getting me back on the right track.

So glad to be back here where I belong. Have a wonderful weekend,

Lisa, The Lady with the Cane

Comments

Popular posts from this blog

Alien feet?

Okay, so after my initial reunion with social media, I naively imagined today to be more productive. But, no...

For someone who doesn't spend much time perusing sites like Pinterest, my interest has suddenly piqued to the point that addiction be a possibility.

Hoping to find someone of like mind, I instead downloaded a slipper pattern I might knit for Christmas presents (oops, there goes the surprise). It looks fairly simple. Let me know if you give it a try.
https://www.pinterest.com/pin/538250592959842993/

And, then, I found this really neat yoga flow outlined for me.
Since yoga seems to be the go-to exercise for us Warriors, I decided to share. That way we do not have to invent our own personalized routine. You're welcome.




Then, I discovered an entire page of memes that put MS in perspective to the causal reader-reluctant  on-looker. And because  this figure is essentially in the child pose... well, you get the picture.

Of course, any information on foot drop always attracts my at…

MS and children

FDA Approves First Treatment for Pediatric MS On May 11, 2018, Novartis announced that Gilenya® (fingolimod) was approved by the United States Food and Drug Administration (FDA) for the treatment of children and adolescents, ages 10 through 17, with relapsing multiple sclerosis (MS). This is the first disease-modifying therapy (DMT) to be approved for this form of the disease in this age group. Known as “pediatric MS,” nearly all of those diagnosed have the relapsing form of the disease. Children also experience approximately two-to-three times as many relapses as an individual with adult-onset MS. A clinical trial comparing Gilenya to Avonex® (interferon beta-1a) in children and adolescents found that those treated with Gilenya saw an 82-percent reduction in their annualized relapse rate over a period of up to two years. Please see MSAA's online news article, "FDA Approves Gilenya® for Pediatric MS,"for more information. If links are disabled in this email, please copy a…

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…