Skip to main content

#MSWarrior #DoNotGiveUp #WeAreStrongerThanMS

 Social Media has done so many wonderful things for us  humans in need of ways to communicate across the country and the world. Until only recently I would not (more accurately, could not) turn on a computer and now this is what I do every single day. There is so much information out there and it is literally right at your finger tips.

With information, there is knowledge. Knowledge is good. Unfortunately, with knowledge there is also danger. We must learn to sort through the good knowledge and the bad information.

With my son's recent diagnosis of mononucleosis, he has spent time investigating his condition in an attempt to recover as quickly as possible.  The more he reads, the further into a funk he sinks. His biggest concern is for the health of his spleen. Go ahead and laugh. We, too, have had  few good giggles over the issue. But, really, thinking back to my teen years, this truly would be a huge concern. The unknown. 

Although mono is pretty much a life-sentence, things could be worse. But, I do not wish to share my own fears, so I must downplay his illness and move on. I know MS is not hereditary. It is not contagious. There is no reason to think that my disease will become his; but, I will admit that if mono is all he has to deal with in the disease compartment, I am relieved.

Since he has lived with the existence of his mother's disease all his life, he really doesn't know any other lifestyle than what has been given me; so making a big deal out of mono doesn't seem to disturb him too awfully much. I am grateful for his attitude, but am all too aware of his need to return to school. While doing my own investigations, I have found so many conflicting views on the issue at hand. Some people report an extended leave from school or work...weeks, maybe months. The doctor told us to play it by ear and come back next week for a follow up exam. This does not alleviate our anxiety one tiny bit, but at least there is a light at the end of the tunnel. MS does not extend that free pass.

My son is extremely driven academically and really, really does not enjoy this mandatory stent of playing hooky. He is dealing with it fairly well, though.  I am not so superior as a parent to believe that this is a result of excellent mommy skills. 


I cannot ignore the reality that I have some how provided a positive example of tolerating what cannot be controlled.

This does not excuse the fact that we both want him to return to school, but the existence of his mature demeanor does soften the reality of the situation. So, I am proud of that.

I do not want him to worry about his spleen, though. And I do not want him to worry about developing multiple sclerosis. And I do not want him to worry about this mother. So, during this time-out, I will enthusiastically encourage video games rather than informational research. Sometimes we just do not need to know, right?

Since Boone was only six months old when I was diagnosed, there was really no need to explain a lot of things about MS. He became infatuated with my Beta Seron how-to videos and has always been quite impressed with his  mother's ability to stick a needle in a variety of body parts with out flinching. I think he was truly disappointed when I no longer self-injected. Now he just worries about me staying up right or how MS might affect the evening menu. And, for now, that is all he needs to worry about. 

Teen years go by so quickly. 

If you have children, how do you approach your disease? Is there open dialogue around the dinner table? Are your children comfortable discussing MS? 

I am really interested in knowing the answers to these questions. MS is not all about the person suffering with the MonSter. MS includes all members of a family.

As MS Awareness Month draws to a close, it is important to remember this. Offer to prepare a meal or invite children out for the special events. 

Love and Light,

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 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


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 …