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Monday, August 29, 2016

Yes, MS, it's Monday.


Yes, it is once again Monday. The air is crisp and cool. A low fog hangs over the streets of my little town and  I can just imagine the first bite into the tangy autumn apples that I will soon gather from our trees in Bemis.

September is nearly here and that means...
CHILLY CAMPFIRES (You know what I mean.)

I love autumn. I especially love the word autumnal.
Isn't that a great word?

With the change of seasons, especially here in our Appalachian mountains, allergies abound. My nose has been dripping all weekend and I feel the sinus pressure building behind my eyes.
Of course, this means that I need to add yet another chemical to my tortured immune system. The dreaded allergy pill. 

I do not take allergy meds years 'round, but concentrate on the spring and fall agitators. Since diagnosed with MS in 2001, I have experimented with and eliminated three MS drugs. I am now on the twelve hour time-released Ampyra. Ampyra is not necessarily an MS medication, but better known as a neurological aid. It is formerly labelled the "walking drug" and I can attest to its effectiveness. On Wednesday my neurologist will do his own evaluation of the effects of Ampyra on my condition. I hope he doesn't report some horrible findings on the use of this "miracle" pill. Ampyra has given much needed hope.

My issue is today, the inclusion of and additional "drugs" on my already weakened system. When is enough, enough?

I realize and appreciate medical science that continues to introduce the super fix for any human medical condition; but I worry about the number of prescription bottles that line my counter top. If I abide a healthy diet, address a comfortable exercise plan, drink my eight glasses a day, and get at least eight hours a night, why can my immune system not reward my body with that magical blue ribbon of excellence?

Instead, I ply my aging body with more and more chemical compounds that mysteriously interact with one another, eventually creating a new and perplexing physical condition to be treated with yet another "fix". Living in an already challenged body, this concerns me immensely.

Plus, there is the cost. What with the current Mylan fiasco, we know the ridiculous inflation creation cost vs. consumer price of prescription medicine. Why does the government and/or BIG pharm get to dictate the price of survival? It is absolute lunacy to be held hostage to individuals who have NO IDEA what it is like to live pill to pill, pay check to paycheck. How often do these individuals sacrifice their own health in order to assure their family that, yes, there are groceries in the cupboard?

With that said, I will use my allergy elixirs sparingly this so that my son can be protected against his own allergic inclinations. And that is basically the issue here. I do not have the time nor the money to line the pockets of such existing millionaire's as Mylan CEO Heather Bresch. It really pains me to think that a fellow Appalachian would make such harmful decisions. I guess that's what happens when one of our own leaves "the fold". Of course, in the case of MS. Bresch, she probably never had to sacrifice her own needs for the betterment of some one else.

But, I am speaking to the  choir, right?

And definitely off topic.

Which is...

Autumn! My favorite season. As long as the temps cooperate, Autumn is also my MS's best season. The MonSter tends to lay low during these moderately temped days and cool evenings. Unfortunately it is short-lived and often unpredictable...90 degrees one day, 75 the next. Thus, allergies thrive...

But, hey, it's autumn! That is what autumn does.

Enjoy this week!

Friday, August 26, 2016

MS will NOT ruin my life.

Now THAT is the kind of message I want to hear.

Recently an individual made the odd decision to tell me all about her marital woes. In detail. With specific vivid description.

My first (and really, only question) is WHY do I need to know all of this? I am truly sorry for her plight, but I do not elect to take sides nor do I need to clutter my already foggy brain with such information. From all indications, this individual pretty much got herself in this mess and she is old enough to figure it all out on her own. We were never really  close and her situation is really none of my business.

Of course, this relative indifference has made for me a rather lonely life at times. I do not share my inner calamities, having (finally) learned that words are often misconstrued creating even more drama for the grape vine. Not my scene.

I used to have a good many friends: work pals, drinking chums, professional  amigos, club conspirators...

With my diagnosis, that changed. BIG TIME.

I have learned who my true comrades are. I am casting blame, mainly because I, too, am at fault. MS has changed my course of interests. Retirement has opened my eyes to a different life perspective. 

And I like it. I do not miss the commotion of my former life, even if I do often entertain images of Lisa's body and mind from years past. But, that was then. This is now. And now I live with  MS. 

I make a supreme effort to take my time these days. I do not over think things and if the issue does not concern my son, I do not give a second thought. Sound cold? No. It's called survival.

I have dealt with insurance issues all week. Since I am ending my first official month on Ampyra, I have seen a distinct improvement in how my body works. Today is (was?) to begin month two. 

Except that insurance really screwed up my persecution delivery and I will now be 12 hours behind on my next dose. I suppose that isn't too bad. As long as the script is delivered today. This concerns me. This provides ample reason for worry. And this is probably too much information for the casual acquaintance. Except that this is what we talk about here.  And this totally impacts my son because if Momma cannot preform son is not happy.

I do not need to delve into the details. If you have MS or are  close with some one who does, you can fill in the blanks. And if you want to discuss this further, leave me a message. We'll talk.

But I really do not need to hear the crazy details of your failed relationship(s). Unless they directly relate to the MonSter, they are of no concern of mine. Some things just need to remain unsaid.

In fact, why do I need to know the intimate details?

Once again, it is none of my business. 

I have MS. That pretty much fills up my day.

Just sayin'...

Have a great weekend!

Wednesday, August 24, 2016

First Day of School

It is the first day of school and his sophomore year in high school.

I cannot believe that my baby is that tall, clever fellow walking out the door and down the street to embrace a new chapter in his life.

He probably cannot believe that his mother is trailing  the behind him. Oh goodness...What if one of his class mates sees this?

Since there is only one other NMHS student on our street, I doubt that's possible. She is usually running behind schedule...

Oops! There she is.

I pretend to be admiring our neighbor's clowder of kittens when she greets me by name and agrees that  they are the sweetest creatures on the face of the earth.

Although I really want to witness my son climbing the steps of the school bus on this monumental morning, I realize that I need to put my efforts into stealth mode. My inner ninja emerges as I casually hang back and take time to remove my mother's newspaper from her paper tube (She lives at the end of my street and conveniently adjacent to the bus stop.) as an apparent act of goodwill.

Not wanting to traipse through the dewy grass to reach her back porch, I instead walk around the yard. This puts me in obvious view of my son's bus mates, all of whom are former students and extremely aware of my relationship to one of their fellow travel passengers. Oh, the shame...

Of course my son pretends I am not there, eyes straight ahead. Or maybe, just maybe, Harry Potter's cloak of invisibility has come to the rescue. 

The bus arrives and I do my best to make myself small. Our young folks have enough to deal with these days. I do NOT want to  contribute to my son's disdain of the older generation. 

As I decided to incorporate my morning's activities into a much needed walk, I realized how easily my feet moved this morning. MS? What MS? This could possibly be a very effective morning routine, as long as I took another route - in the opposite direction of the bus stop route.

And then...the MonSter stole my adrenaline my right foot steered me toward home and not in the direction I really wanted to take.

I had had enough. My world returned to black and white, much like the transition between and Kansas and Oz. 

Even though we both awoke before the day was totally illuminated by the morning sun; even though the walk to the bus stop was not more than a tenth of a mile; even though my baby's youthful years are zooming past at an incredible speed...Even though this walk took longer than two minutes, I felt the weight of the pain of my parent's description of that same walk in their day.

It was all uphill, two miles to and from, in the pouring rain...

You know the story.

But the conditions did NOT worry my son as much as it did me. And today will stretch into eternity until he returns to the nest.

But I made the walk (though I stumbled home) and I will do it again and again.

School has begun. Stay safe.


Thursday, August 18, 2016

Unplanned MS Rambling

Because summer is nearing its end, I find it time to"autumn up" my blog. Hope you don't mind. 
In fact, I have worked for days in an attempt to update my entire platform. Ha! Guess I'll stay with writing, because my website design skills totally suck. I realized this morning that the e-mail address at the top of my home page is one that I really do not want to use any longer and, in fact, have repeatedly asked folks to discard and replace with Anyone have any advice on this matter?

I had my throwback Thursday post all planned in my mind until...

I realize that I should consider myself an expert on living with my MS, but this morning has me all turned around.

Never having experienced vertigo (I don't think), but understanding the mechanics of the condition I initially assigned that label to what my body is doing today. With one slight exception.

Every time I move my head, I feel electrical explosions running up and down my spine and blossoming in a location right above my left eye. I've felt these tiny little electrical (that is exactly what if feels like) sensations before, but not with quite the enthusiasm of today. I'm actually a bit sick to my if I have motion sickness. It's weird.

I have to wonder if this is a result of the forming of a new lesion. I mean, if I was as arrogant as a brain lesion, this is probably what I would do to announce my arrival. MS related lesions are all about themselves, right?

Unfortunately my research does not answer my inquiry, so I must depend upon fellow warriors to share their thoughts. I'll let you know when I hear from them.

In the meanwhile, my chore list is on the back burner. Not feeling super confident in performing a few simple household task and am not happy at the prospect of couching it today.

So, I'll make another attempt at my website/blog design renovation. 


Nope, that didn't work. The stress of not being as intelligent as my computer is too much. Don't tell me to drag and drop when what you really mean is cleaning the litter box is a better option. Unfortunately litter box cleaning requires bending over and I do NOT feel like landing face first in my kitties' muck today.

I DO want to share some news on the "up" side. World Renown chef Trevis L Gleason has been entertaining the heck out of me this week. His book Chef Interrupted is a delightful story, not about food, but about his own journey with Multiple Sclerosis.

Diagnosed in 2001, the same year as my own dx, Trevis shares his heart wrenching transition from a successful career in culinary arts to part-time Irish resident. Only half-way into the book, I already want to adopt a dog, move to Ireland, drive on the wrong side of the road, and drink creamy pints in the neighborhood pub. Check it out if your tastes run toward MS realism. Good stuff.

I seem to be working with themes these days, because last evening I also watched a wonderful movie about a young Irish lass who came to America in search of work and a better life. Brooklyn is an awesome little tale for those of us fascinated with the Irish brogue.

My next MS-related read will be MS Madness by Yvonne deSousa. 

I'm hoping the book is as entertaining as the book cover. I really like Yvonne's blog:

Well, I've gone on far too long and I really do need to feel useful, even if just to myself.

Have a good one,

Tuesday, August 16, 2016

Back to School, Back to Work or Sitting on the Sidelines?

 I went grocery shopping yesterday. It wasn't a fly-by visit. It was an absolute necessity. Usually I can get in and get out in a timely fashion, but yesterday was very different. The students are back in town.

I live in a college town. I should have realized that this is the season. New room-mates are bonding and housemates are setting up "camp". I am truly excited for them and intensely nostalgic. Those were the good ol' years. Wish I knew then what I...

Not only are the college folks back, public school teachers are honing their lesson plans and preparing their classrooms. Several West Virginia counties have already started. My son is happy that Marion County doesn't open until next week, meaning that Marion County teachers are grasping at their last days of freedom.

As a retired teacher, I loved those days. By now I would have an entire corner of my bedroom pilled high with a collection of un-sharpened Ticonderoga's, discount composition books, a semester's worth of tissues, my new lesson plan book ('cause even in this computer age, I loved my hard copy), newly acquired YA novels, age-appropriate affirmation stickers, paper grading red ink pens, peppermint candy, and bottled water.

I really do miss those days.

I really loved my job.

But do not miss the humiliation of taking the MonSter to school with me every day. I had to face the fact that MS had no business in my work place. I had become for my students and co-workers. Mentally I had several more good years in me. Physically I needed to be put out to pasture.

Talk about an extremely difficult situation. I was NOT ready for retirement, but it was definitely time. If I could control my bladder, take charge of my legs, stop the inconvenient tremors, exorcise the cog-fog, and caste away the afternoon fatigue, I would still be there. But I'm not. I'm here. At my computer. Talking to you.

And sense it is not my nature to seek pity, I am actively looking for ways to fill the void that retirement has left me. These are supposed to be my golden years, right? It is difficult to explain to anyone not living with MS that early retirement is NOT the idyllic life that we work long and hard toward.

Stay busy, fellow MS friends. Find a hobby. Write a blog. Join a club, on-line if necessary. Read a book. Hell, write a book! Learn to knit. Learn yoga and practice it in your living room. Clean out your closet and every orifice in your home.  

Just move!

That pasture that MS dropped me in is many miles in the distance. Even though I do not pack up for work every morning, I try to keep myself on a schedule. I learned long ago that a life without purpose is meaningless.

Fortunately I have two major goals ahead of me. On September 1, 2016, Marion County will gain a new self-help group. On the first Thursday of every month, I hope to greet other folks with MS. You do not have to be from this county to come. This is not exclusive to the geographic location. This past spring I spent several weeks training to be a self-help group facilitator and it is actually happening.

Even though this group is not affiliated with religion, Life United Methodist Church (my church) has agreed to put us on their small group agenda. I get butterflies just  thinking about it. I'm a, a lot...nervous about this. Even with the official National Multiple Sclerosis Society training, I do not really feel prepared.

I think uncertainty is good, though. It keeps us alert.

My second goal is to publish a new book. The story is ready. The reviews are in place. An award has already been given and my groupies are anxious to get their hands on it. The problem right now is the book cover. My mind is totally blank. Two covers have been designed, but neither is it. Of course, me being me, I feel extremely guilty for taking the illustrator and my publisher's time to find that perfect cover. we need to get this thing rolling.

But, patience is supposedly a virtue, so I will be patient. 

People look at me oddly when I confess to being retired. Some get angry when they realize that retirement for me is not all chocolate and roses. I assure them that retirement was not forced on me by the "system". It wasn't. This was my decision even though I swear I could hear that huge sigh of relief when I announced my decision.

Am I a little paranoid? Probably, but that's okay.

Life is far too short to regret our decisions. It is what it is. That may sound, take charge and make sure the "it" is what you want it to be.

Have a great day.

The Americans with Disabilities Act of 1990 is a powerful and progressive civil rights law that prohibits discrimination in employment, public transportation, public accommodations and public services operated by private entities and telecommunications. Many people remain active and continue to work despite the challenges of living day-to-day with MS. It is important to know that the ADA prohibits discrimination by covered employers on the basis of disability in all employment practices. This includes job application procedures, hiring, firing, promotion, compensation, training, and other terms, conditions and privileges of employment.
In the last few years, there have been many court cases focusing on whether a person has a "disability" as defined by the ADA. This is an important question, because the ADA's protections only apply to "qualified individuals with a disability."
An individual with a disability is a person who (1) has a physical or mental impairment that substantially limits one or more major life activities, (2) has a record of such impairment, or (3) is regarded as having such an impairment. What do the parts of this definition mean in the real world?
Although in most cases, it is agreed that MS is a disability under the ADA, you might be surprised to learn that MS does not automatically qualify as a disability.

Wednesday, August 10, 2016

Wednesday's Long Walk Home

Hiking, Nature, Walking Trails, Jeans, Walking Shoes

It happened again this morning. That long walk home that started my adventures with multiple sclerosis.

Fifteen years ago as I strolled my baby on the uneven sidewalk through town, I realized something was horribly wrong. My right foot refused to obey my brain's message to lift.   A black and white mother taking her baby for a walk in the stroller

This morning I was anxious to take in an early morning walk. Thanks to Ampyra, I have enjoyed this activity more and more, but this morning good ol' miracle drug was on vacation.

Only a few yard out of my front yard, I realized that I probably would not make it to my mother's flower garden for a planned "weeding". I needed to head home.

And, so I did that very thing.


And here I am. Complaining to you.

At least I can rest assured that the majority of you understand my frustration.

How can we explain to others when we ourselves do not understand this daily unpredictable crap associated with MS?

After doing some simple stretches to limber the ol' stiff muscles, I felt a little better, but still looked longingly from the living room window at the sunny morning. Guess I'll try again tomorrow.

For now I refuse to wallow in self-pity. This morning's walk attempt was nothing compared to that awful, awful morning fifteen years ago. I never would have imagine that story to become an award winning book. Here's a sneak peak at I Have MS. What's Your Super Power?, internationally recognized at the both the London and the Paris Book Festivals.

Chapter One: The Long Walk Home              
          Finally! The beginning of summer vacation. The day that every public school student and their teachers have looked forward to since mid-August. For me, this summer held an even more special ingredient. In two weeks my newborn would celebrate six months on this earth and we had the entire summer to play, learn, and laugh; starting with this morning's mile long walk to the public library. He would enjoy the stroller ride and I could begin to document his academic beginnings.
          I stocked the stroller with bagged apple slices, yummy kiddie cookies and bottled water, my library card, sun screen and a spare diaper. My walking routine had been traded in for feeding schedules and mommy duties lately, so I looked forward to this hike for more than one reason. My legs were getting lazy and my Reeboks were looking too clean.
          I spread a thin layer of extra strength sun block on baby's face, secured his new Old Navy ball cap, and lowered the stroller visor to ensure that harmful rays were filtered. My own sun hat was in place and sunglasses secured.
          We set out with the sun to our backs and I made certain to comment on the sights of downtown Fairmont as we crossed traffic and entered the more historic portion of our small city. The morning was clear and traffic was light, so our journey was the perfect way to begin what promised to be the perfect summer sojourn from academia.
          An hour later with a stroller full of colorful children's books for baby and two crime novels for me, I carefully tucked my now sleeping son back into his chariot and began the return walk home. The sun was a little higher and its rays practicably warmer, but it felt good. I was on top of the world.
          Life couldn't get much better than this, I remember thinking and wished for the umpteenth time that I knew how to whistle. This just seemed like the perfect moment to let out a light-heart-ed whistle. I had the perfect child. This was a perfect morning, very near a perfect library, the perfect distance away for the perfect morning stroll.
          And then, as with all perfect plans, the bottom fell out and all hell broke loose. Four city blocks from home, my vision suddenly blurred and my right arm began to tingle in a strange, limb-falling-asleep manner. For some reason I could no longer fully lift my right foot and my mouth felt like it was actually pull down in what I imagined was a comic book grimace.
          The sun was really beating down on us by then and there were no shady places to rest for a moment and try to collect myself. This was really, really weird. If it was just me, I could crawl home. I would fit right in with the street folks who vacated the empty shop door wells on the upper end of town. But it wasn't just me. I looked down at my little miracle and attempted to adjust the stroller visor, but my arms were becoming strangely useless and I decided to conserve my strength for crossing the highway
          I'll have a drink. That's the ticket. I remember focusing on that water bottle with such an intensity that I had hoped to will it to rise up to me and rinse me in its refreshing contents. But it didn't. Remember? My perfect morning, my perfect plan was no longer perfect; so any magical, lifesaving actions were safely resting in the stacks back in the fantasy section of the library.
          I remember staring out at the four lane (thankfully not polluted with traffic, yet) and praying to God that I could safely push my son’s stroller to the other side. My legs were so weak and my right foot had to be practically dragged.
At least the wheels on the stroller would help pull me in the right direction.
I stepped off that curb and plunged my son and myself into the middle of the highway, steeling myself to ignore the angry car horns that surprisingly did not sound. Or maybe there were none. I really do not know. This portion of my return walk home has gone to the selective portion of my brain, for which I am grateful. I really do not want to know how we crossed that highway. It's more important that we did.
          To this day I do not know exactly how I managed to cross that street to complete my journey over the uneven sidewalk to my own front porch. One concrete step up to the front walk and two porch steps to reach the front door elude me. I do remember sitting on the front step beside my sleeping baby, wondering how on earth I was going to move that stroller to the front door. I was terrified at the prospect of lifting my child in my numb arms and actually carrying him the distance to the door. By now I couldn't feel the fingers on my left hand and my right arm hung uselessly at my side.
          Someone was watching over me that day. Of that there is no question. I think I might have dozed there in the shade of my front yard pine tree because the next memory I have is that of my son making small, conversational noises from his stroller seat. Without even thinking I reached for him and rose from my perch to carry him inside, away from the heat.
          It was as if my horrible walk home had never happened. I had to stretch my imagination to recall the frightening events of the afternoon, but I would not be convinced otherwise. And, of course, as paranormal fate would have it, the lack-of-sensations returned as soon as I changed and fed my son.
          It wasn't as bad, but it was there, what it was. I knew that medical attention was absolutely essential. The only physician I knew to contact was my OBGYN, who blessedly granted me an emergency visit. His advice: Go to the ER, straight to the ER, do not pass GO, do not collect $200.00. This was no post-natal evident, but I could tell he had his suspicions.
          I got some flak from my then spouse, but I had a new reason to take care of myself. I hadn't planned to be a mother at the age of 40. Nor had I any plans to contract some lethal disease.
          Upon registration into the hospital, I was poked, prodded, x-rayed, cat-scanned, and MRI'd. Extensive tests ruled out a stroke and there was no conclusive evidence of any other sensible condition. The entire time I spent in the hospital my biggest concern was the welfare of my child. My mother was out of town and I didn't want to worry my father. Being of an advanced age for a young mother, I didn't have any friends around who were free to help me out.
I finally called a relatively close girl friend whose work allowed her a little more freedom than others and she agreed to hook up with my husband and lend a hand. (They ended up married a few short years later.) Until recently I thought that my son was in her care exclusively until my brother and sister-in-law informed me that their baby nephew had spent quality time in their hands.
          Eleven days later I returned home to continue my summer vacation.
          I relearned how to walk, feed myself, and enunciate words. I couldn't hold my child without fear of dropping him. On July 1, 2001, I had a spinal tap and was officially diagnosed with relapsing-remitting multiple sclerosis. I was prescribed Beta Seron. I learned how to self-inject and I dealt with it.  My son's favorite movie became my VHS instructional video on how to inject Beta Seron. To this day we laugh about this and I fear that I will be forced to convert that old VHS to a DVD for his eighteenth birthday! If he chooses a career in medicine, I can blame it on that video!
          My real MS adventure began that summer. My first lesson was to find out what MS was and how long I had to live.
          Well, that was nearly fifteen years ago and I am still kicking; but the true definition of MS remains a mystery to me and will probably remain so until my final breath.

Thanks for taking time to read about the day I was introduced to the MonSter.

When did you shake it's hand?


Tuesday, August 9, 2016

It's not about me, but it should be.

Recently I was accused (Is that the correct word? Makes me sound like a criminal.) of making other people feel as if they were on the back burner and of putting myself first in everything. 

This makes me sad. Very sad. And I have devoted far too many hours rolling this around in my brain.

I was told that I have an agenda and everyone else in my life is controlled by what Lisa wants. 

Once again, I am very, very saddened by this revelation.

I am the person who no one remembers, the person who has very few friends and is rather reclusive. I do not understand how everything is about me when I spend my days alone. 

I go our of my way to be invisible, moving behind the scenes and being the onlooker. If I have accused MS for my actions, I apologize, and I will not mention it again. If the words multiple sclerosis never had to pass my lips again, I would be happy. I cannot apologize for something out of my control.

Which brings me to a very important detail: We have the ability to control what makes us happy with a little ambition and determination. Right now my life is very, very different than what it once was. I used to love going to football games and hanging with friends, being part of Mountaineer Nation. Through trial and error, though, I have discovered that this autumn event is just not possible any least without dire consequences. 

The heat+The walk+The inconvenient distance between me and the bathroom+The anxiety of all of the above=DISASTER.

It is not worth it to me when watching at home is far more comfortable. Of course the social element is missing, but, hey, I'm just one less Mountaineer Maniac that needs to be looked after.

I don't exercise much any more for much the same reasons that my spectator football activity has ceased.

To fill these voids I refuse to just sit on my behind and (literally AND figuratively) allow MS/lifestyle changes rule my life. I guess this is where it become all about me. I write books. I travel to different venues when invited to share those books. I am realizing a life long dream while trying to keep these activities isolated to my personal time and space. I rarely talk about writing with anyone other than other writers. I do not gloat on successes nor pout about disappointments. This is my personal and private bubble. 

And I will NOT apologize for achieving this dream.

Not that I have been asked to do so. (Just venting a little...maybe a 

I am not asking for pity. I don't feel sorry for myself. I just have to learn how to play the hand dealt me.

So, on a more positive  note...

Last evening I attended a meeting at my church where I will be facilitating a self-help group for MS. This is not about me, even though I confess to being a bit excited about the opportunity. This part of West Virginia no longer has such a group and it is very much needed. This was reaffirmed when one of the other group facilitators mentioned a girl she knew from their sons playing ball together in school. This girl's MS had progressed to wheelchair stages and she often expressed a need to discuss her disease with other folks in the same boat.

This girl happened to be my dear, dear friend Jamie. My book I Have MS. What's Your Super Power? is dedicated to Jamie. I miss her every day of my life and regret not being there more for her while she was still an angel on earth. 

She is looking down on me right this minute and there is no doubt that what I am doing is important. Not just to me. To the thousands of individuals out there who need to talk, to share, to cry, to remember...

I'm not gong to waste my time apologizing for what I do with my time. I plan to rejoice in this new chapter of my life.

So, if my agenda appears a little Lisa-Heavy, so be it.

Bring some joy into another person's life this week,

Thursday, August 4, 2016

Throw-Back Thursday: Is it Adult ADHD or a serious desire to ignore the past?

This has to be one of the most difficult lessons offered in this life. I am firmly reminded it of it daily.

...and I always plan to alter things, but I never seem to get around to it.

A few years ago I considered myself to be a "hard body". For years I taught aerobics. When I wasn't leading the class, I participated as a student. I didn't do it with any particular goal in mind other than to maintain my weight and physically feel good about myself. I really enjoyed exercising!

While dressing yesterday, I realized that my once firm "bottom" was rather (no...extremely) soft. My first thought was to get busy and do something about that. Sounds logical, right? Well, when every day walking presents a challenge for my MS body, my resolve to "do something about" the situation is enough to discourage that intent.

"What a sissy," I think. How much time does it take to perform a few squats every day? 

So, I take my morning coffee to the television stand, turn on the morning news show, and position myself in front of the screen. 

"Here we go, Al Rocker," I say aloud and I begin bending my knees. After a few warm up movements, I break to take a sip of coffee. I love my new white chocolate raspberry dairy creamer. It's nonfat, so it must be okay, right? 

As I enjoy the almost dessert taste of my morning brew, I think about what to have for breakfast. Since it is summer and my son is home from school, we have been eating our morning meal together and I look forward to this summer morning ritual.

Because Al breaks for a commercial, I take that time to go to the kitchen in search of something interesting for our morning meal. 

From the other room I hear today's musical entertainment on the Plaza and rush back to the TV to maybe dance a little to the tunes. Dancing is great exercise, right? I'll shake my bootee for a minute or two and get the heart rate up and my muscles singing.

Oops, my phone is ringing and this early in the day means that it is probably something important.

So glad I took that call. It was the senior minister from my church telling me that he dropped in on my mother-in-law yesterday at her new home at a local nursing home. My husband and I made the horribly painstaking decision to move her in on Monday. It's been a grueling week and we decided to give her some time without us before visiting; in hope that she can acclimate to her new surroundings. I am so grateful that Pastor Clyde let me know of his visit.

Now, back to breakfast preparation.

NO...first a few stretches. Or was I finished with my squats?

Before I can make that decision my cat engages in a tangent of argumentative cat-talk. Guess I had better check her food bowl before she alerts the neighborhood that her human is a negligent pet owner.

Well, shoot, my coffee is cold. Better take care of that right away. 
did I mention my new coffee creamer? It's divine.

Oh, did I hear a  text message ping from my cell phone? I bet that's my BFF checking on my latest knitting project. I realized last night that I had majorly screwed up and would probably be starting from scratch this morning. We commiserated for quite some time; she reassuring me that these little mistakes add charm to the hand made gift. I totally respect her words, but really feel it in my best interest to regroup and start again. It's not that much of a big deal and I am really enjoying this new project. Practice makes perfect, right?

Well, cat fed; son with cereal bowl in hand (He declined the mother/son breakfast ritual in exchange for an early morning Pokemon run.) It's time to do a little exercise.

Get this middle age body in shape!

Maybe I will try a little walk around the neighborhood.

As I bend into my closet for my favorite walking shoes, my eyes fall upon a picture on my desk. Even though my husband is NOT the most sensitive individual on the planet, he does have a way with sentimental cards. They are always so perfectly expressive and I make it a habit to display them around the house so that he knows how much I appreciate his thoughtfulness. This one I loved so much that I framed it and placed it on my desk.

I won't bore  you with the mushiness of it all, but I must share the overall theme. Basically he loves me for who I am and not how I look. He will love me flabby back side or not. If I am happy, he is ecstatic. 



Maybe I will take this quiet time while my son roams the neighborhood to unravel that knitting project and get started on a re-do. My derriere isn't going any where. It follows me every where I go and right now I am headed for the couch to play with yarn.

Have a good Thursday!

Wednesday, August 3, 2016

WARNING: I might wear purple today.

Inspiration Line Online Magazine - Warning, When I'm an Old Woman, I Shall Wear Purple

When I am an old woman, I shall wear purple
With a red hat which doesn't go, and doesn't suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we've no money for butter.
I shall sit down on the pavement when I'm tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick the flowers in other peoples' gardens
And learn to spit.
You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickles for a week
And hoard pens and pencils and beermats and things in boxes.
But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.
But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.



Most of my life I have not been a fan of this particular color, especially that loud jewel-tone shade.

When I began my teaching career, the department head introduced me to this poem. It suited her. She wasn't old, but her conviction was strong. She believed that it was her "right" to behave outrageously in public when she met her elderly self. Thank you, Fern, for driving this point home.

Ironically, Fern somehow knows my Aunt Katie...who loves the color purple. Aunt Katie also is not old, but purple suits her as well. Her purple is soft and gentle, as soothing as her demeanor.

In the last few years I have found myself incorporating purplish hues into my home decor. Remember that I do NOT like the bold purples. When I redecorated my kitchen, I surprised myself  (and my husband) my paint choice. The theme of the the kitchen is now very French Wine Country with lots of lavender and sage accents.

I am even entertaining the idea of chock painting the shelves in the main bathroom in a soft lavender.

What is going on? I do not wear purple. In fact, purple looks awful on me.

But I have grown very fond of the color palette: burgundy, lavender, eggplant, lilac...

This poem is not necessarily about the color. 

Both Fern and Aunt Katie are retired school teachers. Strong women who had  a powerful impact on the lives of thousands of young people over the years. It is their legacy to wear purple. It is their right to warn the public that their legacy is timeless.

Although this poem has nothing really to do with the color purple nor with Multiple Sclerosis, it is representative of all that we do as women to earn our "stripes" in life. We are strong. We will survive. We are independent individuals who have made a mark on society and deserve to bask in our purple  existence.

Just as my MS does not define me, neither do my choices in life. I have made many mistakes, and I am probably not finished. I often think that I am lucky to have lived this long with some of the decisions I have made in life. In my middle-age years, I realize that my life  has been full of defining moments that have molded the me I am today. So what if I have MS. It's just another  chapter in my life.

Just like this "purple" chapter, I have endured; and I will continue to do so.

I hope my husband doesn't mind the new paint in the bathroom. He might not even notice since he's a male:) But I plan to enjoy it. THAT'S  a female privilege.

Today, celebrate the person you are.


Monday, August 1, 2016

Is MS pain real?

I was so relieved to find this article. Mainly because I have doubted that I truly have MS. Folks talk about MS pain and I over hear conversations concerning medication to ease assorted pains, yet until recently I didn't really understand the situation.

Since giving birth to my now teenage son, I have experienced a strange "strangling" sensation in the rib cage area. For nearly fifteen years I have spent a majority of my summer months and a large amount of money trying to rectify the situation. I really believed it had something to do with the birthing process. I have undergone the weekly chiropractic visits. My insurance has been taxed with muscle simulators. One medical professional even told me that I have a floating rib (Doesn't everyone?) and that my best course of treatment was to avoid certain stretching exercises. (This explanation actually convinced me for a while, especially since this all started shortly after having my son. All that pushing and internal stretching surely was to blamed for this new ailment.)

I am now convinced it was none of the above.

Guess what it was (is)?

The MS hug.

Now, why-oh-why, wasn't this mentioned to me when I voiced my concerns to an assortment of neurologists, pediatricians, general practitioners, OT therapists, even my dentist?


Because they had never heard of it. And those who had were not shocked by my discovery, They simply scoffed at my inquiry into this legendary myth of MS lore, patted my hand, and told me to go home and rest.

The MS hug. It is real. And while not painful to the extent of ER assistance, it is absolutely and totally uncomfortable. 

So, yeah, MS pain is real.

It is painful in weird ways. 

Three years ago my son and I stopped at a local sandwich shop for a late lunch. I ordered my usual vegetable sub on flat bread with hot pepper cheese and fat free mayo. (I really do try to eat healthy)
Two bites into my  meal, I started choking. There was a bulldozer tearing through my esophagus looking for an exit. Tears streaming down my face, I soon (but not soon enough) freed the offensive matter; but not before ruining the mood of this mother/son moment.

I did my best to assure him that I was fine, but quickly agreed with him that we should pack up the rest of our meal and head home.

For the next two hours I silently fought the insane panic of not being able to comfortably swallow. Finally I called my mother and asked if she had time to drive me to the ER for a little check-over.

While there for the mandatory emergency room marathon, I became late evening entertainment. Everyone had a theory. Nurses and physician assistants prodded, examined, offered advice, and did their best to soothe my worries until the ER doctor showed up.

And when he did, things started happening. I drank a solution that could possibly make me nauseous, but would assuredly remove my physical pain.

When I explained what had happened, he smiled his kind Indian smile, and blamed the green pepper in my sandwich. The he advised me to spend more time chewing and to concentrate on smaller bites in the future.

Sound advice. Sincerely offered. Sincerely received.

After that I really paid attention to my swallowing mechanisms. Even smaller bites given enthusiastic mandible action often refused to stay on course. MS  had found a new way to plague my daily life. Even now, three years later, my throat doesn't feel normal.

So, yea, I will gladly play the blame game and give this to the MonSter.

Then there comes the muscle issue. I got really concerned when I realized that I could not curl the toes on my right foot.  I also could not point those toes. My right leg would not extend fully during my daily yoga practice. The last few times I went to the swimming pool, I was terrified of drowning because my right leg refused to to flutter in its expected manner. (This from a fifteen year lifeguard was totally NOT acceptable.)

What was going on?

I had never heard the term spasticity. 

For a relatively educated individual (4 undergrad degrees, MA plus 90), I didn't like not understanding this word. Furthermore, to experience it first hand was not high on my "wanna know more" list.

According to the National MS Society, there are several accepted treatment for spasticity.
  • Baclofen, the most commonly used medication, is a muscle relaxant that works on nerves in the spinal cord. Common side effects are drowsiness and a feeling of muscle weakness. It can be administered orally or by an implanted pump (intrathecal baclofen). Intrathecal baclofen is used for severe spasticity that cannot be managed with oral medication.
  • Tizanidine (Zanaflex®) works quickly to calm spasms and relax tightened muscles. Although it doesn't produce muscle weakness, it often causes sedation and a dry mouth. In some patients, it may lower blood pressure.
Other, less commonly-used medications, include:
  • Diazepam (Valium®) is not a "first choice" drug for spasticity because it is sedating and has a potential to create dependence. However, its effects last longer with each dose than baclofen, and physicians may prescribe small doses of at bedtime to relieve spasms that interfere with sleep.
  • Dantrolene (Dantrium®) generally used only if other drugs have not been effective. It can produce serious side effects including liver damage and blood abnormalities.
  • Phenol — a nerve block agent
  • Botulinum toxin (Botox®) injections have been shown to be effective in relieving spasticity in individual muscles for up to three months.
  • Clonidine — still considered experimental

This information is both reassuring as well as not enough for me.

I needed to be able to curl my toes and stretch my legs, but none of these drugs spoke to me.

So I continue to force my muscles into uncomfortable and nearly impossible positions. It is almost a full-time job, but in order to fight the MonSter, we cannot get lazy.

The more I move, the less I hurt. and I really do hurt sometimes. So, yes, MS pain is real.

Being the scholar that my degrees profess I am, I find that having MS has given me a new lease on the quest for knowledge. The more I learn about my disease, the more pi**ed I get. My questions compound daily, making me aware of the frustrations the medical world must feel. 

All of our pain is not physical or apparent to the world. When I cannot stop the tremors while preparing dinner, my mental anguish is over whelming. When I told my husband to sell my season tickets to our university football games, my guilt at not joining him in an activity that we truly enjoy together, tore me apart. For the last fourteen years I have been busy redefining my life. I am finally fairly comfortable with the adaptations forced upon me. And I usually see these changes as a new adventure rather than an injustice thrown at me. 

Things that have eased my "pain":

* Learning how to knit
* Retiring from a job I loved, but realizing it was "time."
* Writing this blog
* Pursuing my dream of publishing my writing
* Ampyra!
* My son
* Seeing my situation as better than others

Keeping a positive  mindset works wonders, but I do allow those times for a good cry to cleanse my clogged soul.

So, keep your chin up and embrace the opportunity to combat the challenges of MS.

Have a great week!