Skip to main content

My new Monday mantra.




Good Monday morning!

Yesterday I got thrown with a very awkward question. It was awkward because of its specific content. The person who asked is not known for having a refined social persona, but she is highly educated. Book smarts versus mature common sense? Probably.

The question: How are you doing with your MS?

Not How are you doing? How are you feeling? What's up with you?

How are you dong with your MS?

While I attempted to filter that question, she continued; either oblivious to my confusion or in an attempt to cover up what she really did recognize as weird on her part.

Her: I ask that because Aunt So-and-so asked me if you were still walking. She has't seen you for a while. I told her that you walk with a cane but you get around okay.

At this point I am still processing and silent.

Her: When I mentioned the walking stick she about freaked, though. I told her that you have had that cane for years. She thought you were probably in a wheel chair by now.

Okay, this is when the bomb exploded in my head. What gave people the right to assume my decline just because I have an incurable disease? 

I didn't respond to the inquisition at hand, but just smiled at the insensitive nature of conversation. Some people just don't get it. No, MOST people just don't get it.

Research and medical science have come a long way, even since my 2001 diagnosis. To think that right before I was born , individuals with multiple sclerosis were undergoing shock treatments in response to their weird symptoms. As of 2001 there were only three acceptable pharmaceutical treatment prescribed to people with MS. Now there is a shopping list from which to choose. Even medical advice has changed from living a sedentary life to being more physically active. 

MS and its treatment change daily...and quickly. MS is no longer a disease that deems its recipients helpless, cicada shells. Yes, I have MS, but I am a Warrior. 

I have had dealings with Aunt So-and-so before and her vibe is decidedly negative. Her attitude is also one of someone totally ignorant to the MonSter. She remembers my dear friend who died a few years ago following a relatively brief stint with MS. Jamie suffered  PRMS. She fell quickly. But MS did not kill her. The complications of her MS contributed to her illness. I don't know if she could have done anything differently to prevent this sad end just as I do not know where my MS will take me. Right now I am relapsing-remitting and doing fairly well. The doesn't mean that tomorrow will be the same.

Unfortunately, folks with little to no knowledge of MS have only the image of that one particular individual  upon which to base their opinions. And Jamie was good fodder for the wagging tongue of small town gossip. Jamie was an athlete. The mother of two sons. A beautiful girl of an affluent family. Bad things do not happen to the beautiful people, right?

And if Jamie's life was snuffed out at such an early age, then surely I must be next.

I really hate harboring such negative thoughts, but just because I am a Warrior does not make me immune to hurtful words. Aunt So-and-so is not a bad person. She probably means well. She just doesn't know and to the ears of her messenger, Aunt So-and-so is concerned. I get that. And I forgive that.

So, walking with a cane or in a wheelchair, bedridden or hospitalized, I am a Warrior. And I will continue to be for as long as I am on this earth. As far as I am concerned, that will be for a long time.

Have a wonderful Monday! The sun is shining in Monongah, West Virginia! 
Lisa

P.S. How is the reading going? I am really enjoying Ann Romney's book.






Post a Comment

Popular posts from this blog

A Sea of Orange Hope

With a forecast for rain and cool temperatures, many felt the 2018 Walk for MS might be a sloppy mess; but when I arrives in Morgantown, West Virginia, I found an optimistic, celebratory atmosphere that no storm could dampen. Clouds dispersed and skies cleared, knowing that the heavens  could not compete with the storm happening on the ground at the  Waterfront.







The true champions had arrived and their name was Warrior.



Tents were erected, tables arranged, team shirt distributed, books stacked, (I got to share I Have MS. What's Your super Power? !!!!)






acknowledgements made, participants in place, and the walk began,






















with Team Tiffany in the lead. My new MS friend, Tiffany Albright, is an inspiration. she single-handedly recruited an amazing team of walkers that outnumbered any other congregation in attendance. Her numbers were amazing in monetary contributions and the enthusiasm of her teammates was more than inspiring. 

Event though I did not personally join the walkers, my day was fu…

Aubagio Followup

WOW!

Last evening I attended an area meeting to learn more about Aubagio, one of the three oral MS medications on the market. General MS physician Mark Hospodar provided the informational portion of the session, complete with a slide presentation full of facts about multiple sclerosis. It was very basic and mostly repetitive for those pro-active MS sponges. Not mind-blowing stuff, but pretty heavy on the importance of medicating upon diagnosis.
Enough to convince me to take a closer look at my own choice to remain MS drug free.

It was an intimate group of approximately a dozen women plus the doctor. Very relaxed, informal, and free of judgement. We were all there for the same reason with the same goal in mind: to discover the "wonder" drug, or at least something closer to a promised remedy. (In addition to the fantastic Italian cuisine at Muriale's Restaurant. Yum!:)

We heard from Aubagio veteran, Renee, who told her journey with her initial diagnosis s well as her life with …

MS and Exercise

I don't know about you, but sometimes (most of the time) the motivation to exercise is just not there. And that is just plain crazy.

I am more than aware of the positive effects of daily exercise. I always feels better, both physically and mentally, after taking time to stretch, bend, and force my body to meet the challenge of movement. My biggest issue is the accountability. Exercising alone means no one can attest to your commitment. Unfortunately group gym, spa, or class situations are not financially nor logically an option for many of us.

And sometimes, like this morning, it is even an effort to fire up the DVD player in order to access one of my many yoga videos. Even though that cute little blond instructor coos encouraging words my way, her interest in me is purely superficial. We know nothing about one another. 

According to healthcare.com the following chart shows the seven best exercises for living with MS. They are easy, doable and require no equipment or additional cost.…