Skip to main content

The P's and Q's of MS #WeAreStrongerThanMS



P is for politics. Yep. This is not my forte nor an active interest of mine, but when it comes to anything of importance there is always a political issue that must be  considered. Earlier this month in West Virginia, the legislature met to discuss relevant issues regarding multiple sclerosis. I had planned to go, but ended up sitting this one out. It was timely, though, with MS Awareness Month beginning. Although I no longer take any recommended MS drug, I do take two Ampyra tablets daily as a walking aid. I have a forty dollar monthly copay on a drug that would normally cost over two thousand dollars a month. Without our governmental support, prescription costs would make it impossible for us to afford the medical treatment we need. So, we need to be interested in how politics affect our MS, even if it is a nasty business.

I have been fortunate with my MS prescription costs due to a (pre-retirement) insurance plan, but I am terrified for those Warriors without the means to obtain necessary treatments; Mainly because it is not always the meds that do the best work toward fighting our symptoms and relieving the pain

Massage is an awesome alternative that is not covered 100% by insurance, but as with exercise classes and physical therapy, it is not considered important enough to be covered by my insurance. 'Tis a shame since these are things that REALLY help me get over the rough spots with MS. And, while congress is hashing over the elements of medical insurance, they need to be aware of these things. So, yeah, it is necessary to be politically aware.

I am not telling you to become a hair burning activist, but the more we reveal the realities of MS treatment, the more awareness will be publicized. I hope.

So...P is also for publicity, which is what MS Awareness Month is all about. I am grateful for this month designated to publicize our cause, but we should draw attention to MS all year long. MS is often a silent disease. Let's make some noise. 

Earlier this month that is exactly what I did with the help of our local news team at WBOY and our county self-help group. Hope we did you proud.

http://www.wvalways.com/story/34652377/multiple-scleroses-self-help-group-offering-support-in-fairmont


Since I did not see this on TV myself and my computer speakers are on vacation, I actually have not viewed this, so criticize all you want. 😉I will never know...

In May I will continue my crusade with a public reading at Morgantown Public Library in Morgantown , West Virginia. I wrote I Have MS. What's Your Super Power? fourteen years after my diagnosis. It took that long to wrap my brain around my situation and want to share my story with "my people". So, if you are in the area on May 17, I will see you at 6:30 and will read at 7:00. Sure, I am excited about maybe selling a few books to support my Ampyra habit, but the prospect of meeting other Warriors and discussing MS is even more thrilling to me. Mark it down on your social calendar. I will see you there!

Since we are on the all important letter P, let me share this silly little activity I found on Face Book. It is really kinda cool. You just click on the link and follow the directions to post an awesome portrait of yourself. So P is for post your picture. Celebrate yourself. When you do, share your work with the rest of us!








https://en.nametests.com/test/result/lisa/ps_6392085663/

For the letter P, also mind your Q's as well. Question, question, question. We will not receive answers until we pose the question. Although  I trust medical science, I have learned to trust my gut maybe a bit more. Our bodies talk to us if we listen.

Q is also for quiet time. For reflection, for knitting, for reading, for meditation, or for prayer: This is so important. We owe it to ourselves to spend some quiet time to just breathe. After you busy yourself making noise about the MonSter for the public, balance that with quiet  time for yourself.

Love and Light,
Lisa

LisaAnnetteMcCombs@yahoo.com
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…

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.…

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 …