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Showing posts from March, 2018

Give me a hug!

Am I plagiarizing again? You bet I am. This is good stuff. The MS hug is an enigma that was never explained nor mentioned to me. I discovered this ailment not long after my diagnosis, but blamed the sensation on child birth. My son was only six months old when I was diagnosed. I just figured this physicalsensation was a result of what my body had endured during thatprocess. 
As the "hug" continued for several years, I finally found mention of this MS symptom. So I researched it and, bang!, came to the logical conclusion that my disease was offering a weird kind of affection. (Yes, I'm a bit twisted when it comes to my MS. It's called survival.)
I have found that stretching and yoga  help relieve the vice-like sensation of "the hug" for me, but there is no known "cure". When the "hug" gets to be too much, fight back. Hug a friend. Turn this lemon into lemonade.
Don't forget to spread your hugs and kisses to other MS Warriors with the gift…

Sometimes You Can Blame MS

Just wanted to share this article. There is so much more than these two points, but  felt the need to highlight these thoughts in particular.
Sometimes You Can Blame MS
I certainly don’t blame all of my problems on Multiple Sclerosis, but, well, it did end my career and my marriage. It’s also responsible for me being in a lot of pain, and a host of other issues. There are some rather large and legitimate issues in my life that I can blame on MS. I’ve been positive, I’ve tried the diets, the different medications, believe me, I’ve done everything possible in the nearly two decades since I was diagnosed. 


It’s not because of our attitudes That is the problem when people make comments about not blaming MS or not being positive enoughor any of the other attempts at being motivational. For many people who have had a rough go of it, motivational type messages can feel like a real slap in the face. It’s not because of our attitudes, it’s because we’ve been through hell. 
https://multiplescleros…

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 …

Aubagio and multiple sclerosis

AUBAGIO...What do you know about it?

Am excited that my little county n West Virginia is actually hosting an educational event relative to my purpose this month. Although I have pretty much sworn off prescribed meds for the treatment of MS, I am still interested in continued education about the MS world. Guess that's the teacher coming out in me.

So, tomorrow evening (6:15) I will be attending an informational event hosted by Muriale's Restaurant in Fairmont, WV. Dr. Mark Hospodar will be speaking to the use and effects of Aubagio, an oral MS treatment now on the market.  I know nothing about Aubagio and am anxious to hear what this neurologist has to say. My hone and only experience with oral medication was a night mare, although I am familiar with the success of Tectfidera for many MS Warriors. Not here to  bash any treatment, but to learn more.

As I mentioned before, I am not entertaining a future treatment of chemically enhance pharmaceuticals, but feel I need to know as much…

MS and disablity

Applying for Disability in West Virginiahttp://www.ssdrc.com/state-west-virginia-wv-getting-started.html


Last week I received a  phone call inquiring as to my disability status. I read constantly on social media about denied requests. Upon retirement from the public school system several folks asked if I planned to apply for disability. The thought really never entered my mind.

Disability is for old people; severely injured military personnel; people who have no other option in order to survive.

Right?

In reality, I have paid into the system for nearly 40 years and actually qualify for early social security benefits without penalty for early withdrawal. News to me. But I never really considered the need for wither of these services. Yep, I'm just an ol' country girl living from day to day in my own little world of naivete. Or, just plain stupid, depending on your perspective.


The point is, there are services out there for us. I'm probably (definitely) preaching to the choir.

Th…

Ohio County Lunch with Books and MS

Lunch With Books at the Ohio County Public Library Like This Page · 19 hrs· 

Today's guest, Lisa McCombs, is being interviewed by Channel 7 News. Lisa has written a book, "I Have MS. What's your Superpower?" and is presenting a special Thursday Lunch With Books for Multiple Sclerosis Awareness Month. Program starts at noon in the Library Auditorium!
I have never enjoyed being in the lime light, but yesterday I learned an advantage to this position. the question and answer session following my public reading from I Have MS. What's Your super Power? was a revelation.

There are so many people out there hungry for information concerning the MonSter. While admitting to my audience that I have no medical background, I also surprised myself by stating that even without those higher education credentials, I AM an expert. 

Why?

Because I live with MS. 

Every day.

All day long.

For the rest of my life.

Thank you, Ohio county Library for inspiring a need in me to learn more. Today I …

SPECIAL THURSDAY NOON PROGRAM FOR MULTIPLE SCLEROSIS AWARENESS MONTH

SPECIAL THURSDAY NOON PROGRAM FOR MULTIPLE SCLEROSIS AWARENESS MONTH

Life-changing events bring out a superpower that each of us needs to survive. Many look to their faith, families, friends, and each of them--in their own way-- provide a strength that bonds into a shield of protection that allows surviving the unthinkable. This amazing story shows how absolutely tough those afflicted with Multiple Sclerosis have to be. Multiple Sclerosis is an insidious disease that affects 200,000 to 3 million people per year around the world. March is Multiple Sclerosis Awareness Month, and author Lisa McCombs be at the Ohio County Public Library, Thursday, March 22, to share her personal experience with "no holds barred" to help others and their families cope with MS.

Lisa McCombs retired after 33 years of teaching high school and middle school language arts. While a difficult decision, she has found solace in being an advocate for raising awareness for multiple sclerosis, with which she w…

Cannabis and MS

I realize that a lot of people are on the fence about cannabis as an effective treatment for MS. The moire I read and study, though, the more convinced I am that this is a viable route of treatment.

During my doctor visit on Monday, the BIG question was popped concerning participating in MS medication. Since my last disastrous experimentation with an injectable (my second), I am without any prescribed MS medication. I take Ampyra every twelve hours and it does assist with my walking; but as far as investing in Big Pharm, I do not partake.

Cannabis is an avenue I have not traveled but one that is more and more encouraged. In this respect, Cannabis no longer holds the stigma it once did when my high school and college friends were enjoying the often adverse effects of said drug. It never impressed me as a past time. My need to be in control was tested far too much to enjoy it.

Armed with a better munition of ingratiation, the idea is growing in appeal.

Whether you have taken the plunge or a…

The MS Gym

This guy is awesome. His passion and enthusiasm to "fix" the ill effects of multiples sclerosis is contagious. Every video I have viewed is do-able while encouraging a sense of physical power that the MonSter has robbed from us.

This morning I discovered 
Trevor Wicken's 52 week fitness challenge, but of  course lost the site link in my excitement. But, that is okay...he has so many videos that I am certain you can mix and mash to create your own work out. Every little movement helps.

While MS challenges us, let's commit to challenging MS!
https://www.youtube.com/watch?v=TBgxBBrsJ8E&list=PLRuP0hP-f1_Cn18bay6gskTi9SCHNliYg



The MS Gym: Walking Strong

Trevor Wicken SUBSCRIBED 2.3K