Category Archives: MS and Aging

Lazy Bones

An MS think tank

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My new favorite song is a perfect song by my favorite band recorded back in 1973.  Yet, I’d never paid much attention to it before.  How can that be?

The song is 100 Years Ago by, of course, the Rolling Stones.  It is basically a look at aging which is ironic because Mick and Keith were just babies when they wrote it.  But I can’t imagine it would be any better if they wrote it now.

It’s filled with perfect lyrics like “Don’t you think it’s wise sometimes not to grow up?”(Yes Mick, I do,) “Now if you see me drinking bad red wine,” (is that even possible?) and my favorite, “Call me lazy bones..”

It’s a fun song and even if you’re not a Stones fan, (is that also possible?) it’s worth a listen.  And since we all have to age, MS or no MS, it doesn’t have much to do with multiple sclerosis.

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But the lazy bones line has got me thinking.

For a long time I’ve pondered the difference between fatigue, (incredibly terribly miserable fatigue,) and laziness.

Now my MS friends are starting to freak out at the word laziness, and rightfully so.  When you live with an invisible illness you live with judgment.  People, and by people I mean colleagues, neighbors, acquaintances, family, friends, doctors, and strangers, tend to prefer to not believe what you say is going on with you.  It’s easier for them to dismiss your diagnosis and/or assume you’re just lazy.  And it sucks.

And have you ever noticed that even if you don’t talk about your symptoms, suddenly people like to tell you what’s going on with them health wise?  When did an MS diagnosis make me a toll free medical health line? These same people don’t want any input and certainly don’t want to hear what’s going on with me medically.  They just want to vent and write me and MS off even though I’m not the one venting!!!ID-100296977

So I’m not talking about those “people” who make the lazy assumption.  I’m talking about when I try to decide if I’m lazy.

This bothers me so much that I’ve started thinking about it.

Truly, I can spend hours lying on my sofa thinking about the difference between laziness and fatigue.  (Is that lazy?)

I used to be independent. I used to be able to go to my job, work ten plus hours, do errands afterwards, come home and eat a quick dinner and THEN maybe even do laundry or go to a meeting for a committee I was volunteering on.

I can’t even imagine that now.  Slowly all that energy disappeared and before I knew it some doctor I didn’t even know was telling me I had multiple sclerosis and I started injecting myself with crazy expensive drugs.

Who’d thunk it?

So those days of being active for over 16 hours a day are long gone. According to Mick and Keith, about 100 years ago gone.

But I don’t like being inactive and so I don’t like thinking I may be lazy.  But I often feel lazy and so I start thinking and then I get more confused and start thinking some more.

Here are some of my thoughts-

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If, when I wake in the morning my whole body aches and is screaming for rest and I don’t get up right away, or get up, pee and go right back to bed to rest a bit longer, is that lazy or is that MS fatigue?

If I’m moving so slowly that it takes me an hour to shower and get dressed when I used to HAVE to be able to do that in 20 minutes in the past, is that lazy or is that MS fatigue?

If even doing the simplest errand such as going to the pharmacy and picking up a prescription is so exhausting that it’s the biggest accomplishment of my day, is that lazy or is that MS fatigue?

If it’s easier for me to just grab a bowl of cereal for breakfast rather than taking the time to put together a healthy smoothie, is that lazy or is that MS fatigue?  (For the record, I have started drinking healthy smoothies and while I know they are good for me, they haven’t helped with energy.  Perhaps I need to drink more than just three in a month?)ID-100348548

If it’s a cold, rainy Sunday and all I want to do is curl up under a super soft blankie with a good movie, is that lazy or is that MS fatigue?

If I happen to go say a few days or a few weeks or a few months without exercising even though everyone says that exercise is good for me, is that lazy or is that MS fatigue?

If someone asks me what I want to do or what my preference is on something and my brain is just too tired to decide and so I leave it up to the other person to decide despite their frustration, is that lazy or is that MS fatigue?

If I suddenly have this intense desire to bebop around my apartment while listening to say, for example, a Rolling Stones song but have to sit before the first chorus, is that lazy or is that MS fatigue?  (Who am I kidding?  The Stones give me enough energy for a whole song.  How can it not when one thinks about the time Keith Richards passed out on stage but still finished his entire set from the floor?)

If I spend some quality time responding to important emails and then reward myself with 20 minutes of dog and baby videos on YouTube, is that lazy or is that MS fatigue?ID-100128348

Does any of this even matter?  It seems to me that is does.

Which is why I spend hours resting and employing my personal think tank on the matter.  Yet, I haven’t come up with an answer.

Shouldn’t the MS scientists and peeps be working on this?  Oh right, they’re actually busy trying to cure this beast.

And so it is up to us, the individual MS’er to try to figure it out for ourselves.  And to decide what we can live with and what we can’t in the realm between MS fatigue and being active.

It’s not that my MS fatigue or laziness hasn’t accomplished anything.  In the five plus years since my diagnosis I’ve moved, started this blog and published a book.  (Well, actually, my publisher published the book.  I just wrote the darn thing.)

I’ve probably done other things too; I’m just too tired to remember what they are.

I insist on not giving up and do my best to accomplish what I can, when I can. And I probably worry about this issue more than I should.

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But the fear of being lazy continues to haunt me as I struggle to figure all this out.

Thankfully, Mick and Keith say it’s ok for me to call myself lazy bones every now and then.

I like my lazy bones; my fatigued, doing the best they can, good old lazy bones…

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The Curious Case of Multiple Sclerosis Part I

MS and the aging process

Me and Mrs. B

Me and Mrs. B

Hi friends-  I’m repeating this particular blog solely because a long lost photo album was just discovered and in it were pictures of me and my best toddler friend.  What better way to show the bridges from childhood to old age and back again than me and my Mrs. Beasley? 

Plus, this particular post never gets old.

Even as I do!

Road trip

Road trip

How is it even possible that an illness can make you feel like a little old lady and a little girl at the same time?    It seems only multiple sclerosis has the insanity to do just that.

The old lady part isn’t surprising; I have felt older than my actual years for some time now.   It started even before my MS diagnosis with innocuous signs such as: this former party girl no longer interested in well, partying, my not being able to stay awake until the end of a movie, having trouble getting myself up when sitting on the floor, my aches, and, of course my pains.

My MS diagnosis coincided with additional signs such as; choosing to no longer sit on the floor, engrossing conversations regarding boring medical stuff, a super sized portable pill container filled with a wide assortment of needed medications, a written list of all my medications tucked securely in my purse in case I need it but never in a place where I would remember it, and my extreme forgetfulness.

Not my pills

Not my pills

What were we talking about?

Oh yes, “my dose of thyroid medication is much higher than your dose, dear.”

MS making me feel older than I want to feel comes with the MS territory.  But recently, this illness had me feeling like a little girl as well.

It was during a road trip my dad and I were taking to visit a sick relative.  Going back to the old lady thing for a bit, my dad and I have taken a lot of road trips lately as he has (thankfully as city driving is just too much for me,) appointed himself my designated driver to all my appointments.

Road trip Portugal

Road trip Portugal

We have turned Driving Miss Daisy into Driving Miss Yvonne.  But at least my dad and I have a common taste in rock music to listen to along the drive- take that Morgan Freeman!

Usually half way through the drive to the big city my dad stops for coffee and while he chats with the counter girl, I slip into the ladies room.   This time however, we drove right past our regular stopping place.  I didn’t panic.  I had to go but not too badly and I was a grownup, I could hold it.

Forty-five minutes later though the city traffic was at a stop and go crawl.  I had forgotten about city traffic, old lady again. I tried to hold it, I really did.  I wasn’t five years old, this was silly.  But as the next exit approached, I broke down.  I was a child again.

Not my dad's car

Not my dad’s car

I think I said, “sorry Dad, but can you take the next exit, I have to use the bathroom and don’t think I can wait til we get there.”

But it came out sounding like “Daddy, I have to go potty right NOW!  Really, really bad!”

I waited for the response my dad would give me back when I was five, “be a big girl and hold it Yvonne- we’re almost there.”

Or, “didn’t I tell you to go before we left?”

I worried that he would go back to being the dad he was at that time and just pull over expecting to me go on the side of the road.  Thankfully, the seventies were over and my dad decided maybe coffee wouldn’t be so bad after all and he took the exit.

Back on the road and listening to Elvis, the side trip to a bathroom made me think of my childhood.   Not for the first time I wondered if I had jinxed myself with an illness that made me feel older than my years.

Road Trip Beach Bar

Road Trip Beach Bar

As much as I love babies now, when I was a little girl my go to comfort doll was Mrs. Beasley (who in my family thought that giving me an old lady doll would be a good idea?)   You remember her, the grandmotherly looking doll Buffy on Family Affair dragged around.

My dad drank his coffee and started to sing to Elvis.  It again reminded me of being five when he would sing Elvis songs into a hairbrush for me as he got ready for work, making up lyrics when appropriate or when he forgot the real ones.

Not my dad's coffee

Not my dad’s coffee

So, maybe the movie of this time in my life isn’t Driving Miss DaisyMaybe it is actually The Curious Case of Benjamin Button.   Maybe MS has just screwed up the natural order of the aging process, accelerating to elderly stage and then going back to being a kid.  Hopefully, this time I will be cuter.

Would anyone like to play a quick game of Candyland?  No, not on the floor, let’s use the kitchen table like the grownups do.

And then it will be time for my nap….

Not my napping feet

Not my napping feet

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The Not So Golden, Slightly Tarnished Girls

Multiple Sclerosis is no match for a birthdayID-100183604

The story starts like this.  Three besties gather at the home of a fourth to help her celebrate her birthday.  The friends are the serious Gidget, the shy Amber, and the wild child Traci.

******Note-names have been changed in this writing to protect the ages and the humiliation of the participants********

The birthday girl was thrilled because her little brother called to wish her a happy 26th birthday,

The girl thought she was actually much older but since her brother is smarter than her and doesn’t have her MS related cognitive difficulties, she decided he must be right.  So there she was with her friends, celebrating a birthday that happened to fall on a weekend.

Ok, this third person writing is confusing me and since it doesn’t take much to really confuse me, I will just tell you that I am the birthday girl I am talking about.  And yes, according to my brother, I turned 26.

I don’t usually make such a big deal out of my birthday but since it fell on a Saturday, I felt I needed to do something to celebrate.  Watching marathon reruns of the original Law and Order episodes didn’t seem to cut it.ID-100256550Luckily, some of my friends happened to be available.

If I’m only 26, how can it be that I got lightheaded after drinking one glass of wine? What’s wrong with me?  It took me an entire five minutes to sip that glass- I shouldn’t have been lightheaded that quickly!

Things went pleasantly downhill from there.

We spent the first part of the evening recalling the times when we were younger, cuter, smarter, dumber and way less tired.

Yes I do know that smarter and dumber mean opposite things and so putting them together in this previous sentence doesn’t make any sense.  Allow me to explain it this way-back in time my friends and I were smart enough to figure out how to do the dumb stuff we did and even smarter at knowing how to get away with it.ID-100315351

Sharing stories reminded me of Bruce Springsteen’s hit, Glory Days.  Especially the line that says, “I hope when I get older I don’t sit around thinking about them, but I probably will” and the other line that says, “she says when she feels like crying she starts laughing thinking about Glory Days.”

Personally, I think it is ok to reminisce in this way, especially for my friends and me.   With my multiple sclerosis brain, who knows how long I’m going to have these memories.  As for my friends, cognitively speaking they are fine.

BUT, they ARE old.  Who knows how much longer they will remember these stories themselves.  I could write them down but that just seems exhausting.

As we cherished how much we used to love to go out, we talked about how glad we were that we weren’t actually going out.  The crowds, the drunks, the foolishness, it was all just too much.  It was then that we decided to get drunk and foolish.

It started with the game Scattergories.ID-100143404

Problem 1 occurred when Traci and I couldn’t read the game sheets.  Amber and Gidget have always worn glasses and even though Gidget was fretting about her ophthalmologist’s suggestion that she get bifocals, she and Amber could see fine.

But I had to pull out my cheaters and I was not happy about it.  Since poor Traci had refused to progress to cheaters, she could not see a thing either.  I found the lighted magnifying glass that I insisted was all I needed to read before I broke down and bought the cheaters and gave it to Traci.

With all of us ready with our assisted vision devices, we then encountered problem 2.  We tried to set the game timer only to discover that it was broken.  This was unacceptable on my birthday and so I did the practical thing and banged it several times against my kitchen table.ID-100166384

When that didn’t work, Gidget downloaded a timer on her phone and we began to play.  Thing was, we couldn’t remember how long we were supposed to set the timer for and so with each round we played, we gave ourselves more time.  By the end of the game I think we were giving ourselves 20 minutes for each round; not that all that extra time helped us any.

We had some classic game moments when we had to find answers beginning with the letter G. Traci came up with Things You Replace-Guys.

Imagine my shock when the normally reserved Gidget answered the part of the body question with a female part that rhymes with C-dot (she had to be channeling Traci to come up with that one,) and my horror when Amber (as big a Rolling Stones fan as I am) couldn’t come up with Gimmie Shelter on song titles, even as I hummed it.

Plus, I think it was playing on the stereo at the time!

What’s happened to us??

Wine, giggles and munchies ensued and as we got even tipsier we moved onto Traci’s favorite game, the hilarious, R/Xrated, adults only, not for the faint of heart Cards Against Humanity.

And it was fun; silly, pointless, crazy fun.ID-10054121

So what if we weren’t out on the town dancing in our highest heels?

(I don’t think I managed heels even in my best “no balance worries” days.)

And so what if Traci and Amber had kids they had to get up and feed first thing the next morning?

And so what if Gidget had to get ready for a crazy work week and her hangover wasn’t going to help her any?

And so what if this birthday fun lead to me falling into a two day attack of the zombie/super blah mode of multiple sclerosis, starting the very next morning?

Fun is fun.  And you’ve got to try to find it whenever you can, even if you need a weekend birthday as an excuse.ID-100207768

This thought leads me to another lyric of another song that I chose to adapt for the situation-

It’s my party and I’ll laugh if I want to,

Laugh if I want to

You should laugh too when the tears won’t do

Do, do, do, do, do!

My friends wouldn’t dare take a picture of me feasting on my birthday sweets but if you need an actual image, it looked something like this-

bday cake

Poor Gidget got stuck taking the pictures but here is one of some of our birthday fun.  Guess which one is the friend known as Traci..

birthday fun

Want a helpful tip combined with some shameless self-promotion?

Here it goes-

If you need a birthday present for someone then give them the gift of humor, shared as only I can do it!

MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis is guaranteed to make all readers giggle through whatever ails them!

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Don’t believe me?

Then please check out some of the awesome reviews on Amazon!!

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Yeah, MS, Woo!

Multiple Sclerosis goes dancing

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The Rolling Stones were coming to town!!!!  Yes, THE Rolling Stones, right to my little corner of the world!

Ok, if you insist on being specific, it was not my town but the town right next door to my town.   The town that I could drive to in less than 10 minutes.  How much more exciting can things get?

Please allow me to digress slightly.

Previously I blogged about how I am not a fan of spring (Chop Their Happy Little Heads Off.)  True, I do not like the bugs, pollen, noises, crowds, heat and humidity that comes with spring and thus why I claim I do not like the season as a whole.

Recently however, I discovered (without even shelling out a dime for therapy) a secret, darker reason why I don’t like spring.  Turns out, it’s a sad, emotional reason.

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Here it goes- in my younger, exciting, party days, spring was the official start of the party season.  My friends and I would begin to venture out of our tiny, crappy apartments and gear up for beach parties, dive bar parties, wedding parties, patio parties, house parties and any other party we could come up with.

One friend lived on a farm and staged a three day “Welcome to Spring” party each year.  You could stumble home and come back during the three days or pass out in the hay next to the chickens- your choice.  But the party was on!

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Memorial Day was actually called “Memorial Day” as it was always an event just trying to remember how you spent it.  If you had a memory of the party that weekend, than you were memorable indeed.

But whether from multiple sclerosis fatigue or the scary aging process, these days, I prefer the cocoon of cold weather in the winter and the anticipation and stocking up for the cocoon in autumn.  Spring comes and I have no excuse to hide.  And since my energy is zapped and I no longer have the party spirit, I feel like I’m missing out.

Somewhere around me is a cute 21 year old girl with a future, sitting by a bonfire and flirting with guys just a little wild.   That girl is not me.  If she were me, she would actually be holed up on her sofa with an iced tea and a good book, doing her best not to fall into a nap that will disrupt her sleep cycle for days.

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But she used to be me and when spring arrives I feel like I am missing something.  And when I can’t FIND what I’m missing then I start to REMEMBER what I’m missing and it just makes me feel old.

So, when my Rolling Stones fairy godmother sent me a text to tell me that the next day the Stones would be appearing in the little town next to ours, I couldn’t say no.  Suddenly, since it was late April, the air of excitement hit and I looked forward to getting out.  I was going to party and see the Stones and maybe this year I would be young and fun once again.

It didn’t matter that the Stones were appearing in a concert DVD, Shine a Light, at a local hall as a fundraiser for a radio station- it was the Stones in my very own neighborhood.

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It didn’t matter that my fairy godmother and I would each pay $10 to see this DVD at this hall when we each had the same DVD at home and had watched it several times before.

And it didn’t matter that we would pay $7 for a small glass of wine when we each had plenty of bottles of wine at home.  We were getting out!  We were being social!  It was the Rolling Stones!

We reasoned that as this town was the source of many of our parties, we would likely see some old party friends at this event.  And since I was getting so caught up in the spring air I even started to wonder if maybe I would meet some cute male Stones fan I never knew existed.  It was spring and the possibilities were endless!

We donned our concert t-shirts and rock buttons and headed out.  We arrived early and sat in my car for a bit, where we watched old people, like really old, like mid-sixties and stuff, venture into the hall.

Where were they going?  They couldn’t be going to the airing of the Stones DVD- they were too old.   My friend and I knew better.

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Like we knew how wrong the DJ was when he teased some of those old folks about how Mick Jagger himself might show up.  What an idiot.  Everyone knows that it’s Keith who actually shows up to these things. Maybe Ronnie if he happened to be in the neighborhood but definitely not Mick.

We got our overpriced cheap wine in the plastic cups and headed in.   And everyone WAS older than us!  Everyone except the venue manager who kept calling the concert film and others like it “vintage.”

What the hell does “vintage” mean?  I thought it referred to wine that actually tasted like it cost $7 which our wine did not.

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As for the male Stones fan I would fall madly in love with? He was there alright.  My age approximately, kind of handsome but standing in the back by himself and not at all friendly.  All of that would be ok if he stood in the back so he could dance.  BUT HE DIDN’T!!!

In fact, NOBODY DID!

It was killing my friend and I.    We clapped and yelled and chair danced through the whole first half and then Tumbling Dice came on and we couldn’t help ourselves.  We danced. As the saying goes, “we danced like no one was watching” which was not the case as since we were the only ones, everyone was watching.  We didn’t care.

I tried to ignore the fact that we had to sit down right after that song. What happened to the days when we just HAD to dance through the whole concert?

The real surprise came when the Stones played Brown Sugar.  It was then that I realized my friend and I were in an alternate universe.  Nobody moved.  You have to be in a coma to not dance to Brown Sugar.

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I was at a live show once and a guy was taken out on a stretcher after a brutal fight with the very drunk biker behind him.  Even as the blood was spurting from his multiple injuries, the guy was waving his arms along with the “I say yeah, yeah, yeah, woo” lyrics he was hearing.

At this hall near my hometown, I was dancing.

My friend was dancing.

But the young manager who called the film “vintage” was not.

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The kind of cute, rude guy was not.

The other members of the audience who may have technically been closer in age to Mick and Keith than I was, were not.

It didn’t matter that they politely clapped after each song.  How could they possibly be appreciating the music if it wasn’t giving them the energy to move?

The Stones had even played Start Me Up and again, nothing.

It was then that I realized something important.

This knowledge is crucial.

It may even reverse aging or even, maybe, just maybe, cure multiple sclerosis.

The lesson is this-

No matter how old you are or how tired you are or how weak you are, you can still rock life and have fun.

You just have to appreciate the Rolling Stones to do so…..

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The World is coming to an End Part 2

Multiple Sclerosis is even uncooler than originally thought

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If you read last week’s blog, part one of this crucial two part posting, you might have felt that I was exaggerating.   But consider even more evidence as multiple sclerosis and aging continue to drastically combine, making me and my world even uncooler than originally thought.

As someone smart who would have loved to have the talent to be in a rock band, I recognize that rock bands are cool; especially classic rock bands.   I recently discovered that my TV has on it something called Music Choice stations where I can pick a genre of music and just listen to it, 24/7 if I feel like it; or if MS is keeping me from sleeping, thinking or doing anything remotely productive.

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I didn’t know about this station previously as the stations I actually get on my television die after about channel 100.  Music Choice is in the 500 range and whoever goes all the way up there?

Anyway, they have a classic rock channel and of course, that would be the coolest one to watch.  And it’s even better than listening to a good radio station as no commercials interrupt the classically cool music.

As I was listening to this station I noticed that to give you something to look at while they play music they offer “Did You Know” questions about the artist whose song they happen to be playing at the time. I was super proud that I knew most of the answers to the questions.

Yes I knew that Mick Jagger went to the London School of Economics

Yes I knew that Jimi Hendrix lit his guitar on fire at the Monterey Pop Festival

Yes I knew that Led Zeppelin was inducted into the Rock and Roll Hall of Fame in 90’s.

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What a relief!   MS hasn’t robbed my brain of knowledge of important information!

But after the trivia questions, the channel shows advertising relevant to the person watching the channel.  And what did the Music Choice Classic Rock channel offer?  Advertisements for Medicare, knee replacement surgery, Life Alert bracelets and loan payments!

Seriously!  The channel could at least take me back to my party days by offering fun beer and wine advertisements.

I no sooner thought that when they showed another advertisement- for help with addiction!

Everything I ever understood about what I thought was cool and what wasn’t just got completely shifted around as I sat on my sofa, enjoying the music but paranoid about what ad would pop up next.

Speaking of paranoid, did I know that Black Sabbath’s song Paranoid was their only top 20 hit?

No, I didn’t know that one.  And like that, my worries about the world coming to an end were back.

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I couldn’t even take comfort in the fact that my favorite guitarist, Keith Richards, wasn’t helping me sort this all out.

Keith Richards, the hardest rock partier of the seventies and one of the coolest musicians ever, had just published a children’s book!!!

Who could have possibly seen that coming???

 

True, it is a book about a cool kid with a cool grandpa who both play cool guitars.

And true, it has really cool illustrations done by Keith’s own daughter.

But still, this classic of classic rock guitarists writing children’s books-how am I supposed to handle that?

Luckily I took comfort in the fact that if Keith was going to write a kid’s book at least he wrote a cool one. I pondered further and wondered if the answer is that maybe perceptions change as we age and/or as MS robs us of things that we treasure.

Yes, MS is still super uncool.  But maybe it’s not that simple.

So please allow me to take pride that, for the most part, I can still recognize cool even though cool might not be as obvious as it used to be.

MS= Very, very uncool

Worrying about what’s cool and what’s not=uncool

Living life with whatever you may need to rock it= Cool

Realizing that changes in life don’t mean that the world is coming to an end= cool

People with MS kicking MS butt= Super, super cool!  Probably, the coolest of the cool…

Next to Keith Richards of course.

 

A letter to my awesome readers-

Dear friends,

Did you know that you can help fight multiple sclerosis?   I believe that one way is by using your sense of humor to fight back!  Every time you smile, giggle or laugh out loud, you are fighting back!

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Another way you can fight MS is by purchasing my book/ebook, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis where a portion of the proceeds from each sale goes to nonprofit agencies helping people with, or who are fighting chronic illness.

But here’s a new way to fight back.  By checking out www.iConquerMS.org 

This website, sponsored by the Accelerated Cure Project for MS is described as a research initiative where MS patients can share their health histories and work together to find the best research to develop a cure.  With patients working together, who knows what we can do!

Check it out here to see if you would like to become involved..

www.iConquerMS.org

 

 

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The World is coming to an End Part 1

Multiple Sclerosis is uncool

 

The world is coming to an end!

Perhaps that statement is a little extreme.  But when I saw the commercial that was my first thought.

What commercial you ask?

The one where Henry Winkler tries to get people 62 and older to contact him about a reverse mortgage.

You remember Henry Winkler of course; he was the coolest of the cool.  He was the Fonz and no one was cooler.  By his own admission, Elvis was close but that was all,.

Fonzie wasn’t just cool for the 50’s, the time period when Happy Days took place, but for the seventies and eighties too.

Personally, I was never cool.  But I was somewhat smart and as a somewhat smart person, I knew how to recognize cool immediately, even in my own family.

 

When I was 10 I had an adorable male cousin who was 6, always in trouble and funny.  And I just knew he was cool.  So cool that when my aunt bought him an Evel Knievel doll for Christmas, he had no qualms about announcing that he was disappointed as he already had it.  And none of the adults thought that was rude.

 

I then horrified my family by stating that I would love to take it off his hands.  It was not cool for a 10 year old girl to want to play with an Evel Knievel doll.  But, being smart, I only wanted the doll so it could be my Barbie’s new boyfriend. And how much cooler could Barbie be than by dumping Ken and taking up with Evel Knievel as a new boyfriend?

 

Now I’m in my forties and being cool or uncool isn’t as important, or so I thought.  But Henry Winkler being a spokesman for something only available to people over 62????  That is very upsetting and very, very uncool.

Since I’m not in my sixties, not quite yet anyway, my reaction to this commercial was a little drastic.  But the most upsetting part was when Fonzie said those who called and requested the free reverse mortgage packet would also get a free magnifier with an LED light so they could better read the info.

Why was this upsetting? Because I had just bought one a few months ago!!

Yes, I already have a magnifier with an LED light and I actually paid for it.

 

Yes, I was offended that my over 62 friends could get one free when I had to pay for mine but the bigger issue is when and where did I start needing something like that?

The even bigger issue is when did Fonnzie lose his coolness and what does that mean for the rest of us who aren’t cool but need people like him to help us through this uncool world? I worry that when Fonzie is no longer cool the world as we know it has likely come to an end.

One of the many super sucky things multiple sclerosis has done in my life is to make me feel as if I am aging rapidly and in confusing and upsetting ways.

One minute I’m a child and “I need to go potty RIGHT NOW” and in another minute I’m an old lady who “is feeling a little unsteady sonny, can you help me cross the street?”

 

And this concern shouldn’t be a cosmetic one but let’s face it, it is.  Last spring I got carded buying a bottle of wine.  Only six months later I was walking my three year old great nephew down the street when a neighbor asked if he was my grandson.

I’m used to being uncool.  And I know that MS is a very uncool illness.  To help me better cope with it I need the cool reminders of my youth.

I need to know that MS hasn’t robbed me of all of my most important skills.

I need to know that I still know cool when I see it.

MS=Not Cool

Henry Winkler advertising products for the older crowd= Not Cool

Fonzie in his best Fonzie years- Cool

My family, friends and readers= Super Cool!

 

Guess I still have that skill after all….

Getting Older: A Good Thing?

A multiple sclerosis guest blog by Jennifer Digmann

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Ahhh friends, autumn is here and I couldn’t be more thrilled!   The weather has been just perfect and I am so happy that I have been outside a bit, picking up some natural vitamin D.

I have been enjoying this time of year so much that I didn’t leave much time this week to write a new blog.  I was just going to offer up an oldie when new friends, Dan and Jennifer Digmann came to the rescue.

 

I met Dan and Jennifer on Twitter recently, a social media site that I only moderately know how to use.  Luckily, Dan knows how to use it and he tweeted me about my blog and then I tweeted back and tweet by little tweet, I got to know him, his wife Jennifer and their awesome work.

 

Dan and Jennifer have been married for 9 years and both are living with multiple sclerosis.

And while that seems like a huge cosmic cruelty to have both a husband and wife struck with this sucky illness, it was actually MS that brought them together.  They met at an MS event titled “Finding Your Buried Treasure.”

 

How cool is that?  I bet neither expected their buried treasure to be a spouse.  I am officially making more of an effort to get to more of these events!

I have been to a few and have met many wonderful people but I have yet to find a husband at one- perhaps I am not looking hard enough?

Anyway, Dan and Jennifer totally rock!   They regularly write about their experiences on their blog on their own website       www.danandJenniferdigmann.com and on the website Healthline where they also blog.

Thank you so much Jennifer and Dan- so glad to have made your acquaintance.

For your reading pleasure, dear readers, please check out Jennifer’s thoughts on an upcoming birthday.

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 Getting older: A good thing?

by Jennifer Digmann

I turn the big 4-0 in less than forty days and there has been a doom-filled cloud following me for, oh let’s say, the last 320 days or so.

There is a daily countdown to the big day, November 6, on my refrigerator. This age has been hanging over my head because up until now, getting older always has been followed by a great life-altering event.

Think about it: you start driving when you turn 16; vote at 18; and drink (legally) at 21.

Even turning 30 was fantastic because that was the age when Dan and I got married, and it seemed my life really began.

 

But I am a little more than a month away from turning 40, and I can’t stop thinking that it’s just downhill from here. Forty is just plain O-L-D, and so am I.

I posted this #TBT picture of Dan and me on Facebook a few weeks ago, and my aging was noticed. Our friend Michelle commented, “Look at those fresh, young faces!”

Ouch!

Normally, I probably just would have smiled and forgot about it, but being close to turning 40, the comment stuck with me. I’m not ready to get old.

Recently as Dan and I drove to our Multiple Sclerosis (http://www.healthline.com/health-slideshow/multiple-sclerosis) support group meeting, we talked about that subject. I was lamenting about getting older when he asked about my 30s.

 

“Ah, such good times,” I waxed nostalgically. “We were married, moved into our house, I finished graduate school.”

“Yes, Jennifer, but what else?”

Whether intentional or not, I began seeing what Dan was getting at and began looking at my 30s through less rose-colored glasses.

“Well,” I thought, “39 hasn’t been all that great, especially with Trigeminal Neuralgia and my Gamma-Knife surgery not working as well as I hoped. And I haven’t driven or walked in this decade.”

With all the good stuff, this decade also kind of sucked.

 

And maybe that’s what Dan was getting at: in life you always have to take the good with the bad.

Perhaps it was just his sage wisdom that comes with age. After all, he just turned 42!

This conversation got me thinking about the promise of the new decade and the opportunities it has in store for me. But these opportunities won’t happen on their own. I need to take control of what I can. (link to http://www.healthline.com/video/managing-multiple-sclerosis).

I’m realizing I’m finishing my 30s to position myself for greatness in these once-feared 40s. I have started aggressive physical therapy that is focused on building my core strength and increasing my range of motion. I also took the necessary steps to begin Rituxin, a more-advanced treatment to control my MS.

All of this is very empowering and fills me with hope.

Maybe turning 40 will be better than I thought.

 Happy pre-Birthday Jennifer!!!

80s kids

 

 

 

The Motley Two Go to Motley Crue

Multiple Sclerosis meets heavy metal

 

Ahhhh, there’s nothing like a good old summer head banging concert to remind you that you have multiple sclerosis.  Or that you are getting old.  I can’t tell which.

Too often the things that make me feel old could either be signs of old age or signs of MS.  Like the horror that arose when the radio station outside the concert doors asked me a Rolling Stones question and I GOT IT WRONG!!!

There is something completely inappropriate about that.  Yes, my MS brain does face cognitive challenges and memory loss issues but not remembering the answer to an awesome Stones trivia question??  I think it’s time to redo my MRI to find out what’s going on there…

 

(In case you’re curious, the question was which Stones single was the first to hit #1 in the UK?  I said Come On and I was wrong.  If you are dying of curiosity and just can’t stand reading any further without knowing the correct answer then here you go- the first #1 in the UK was It’s All over Now.)

But I greatly digress-another symptom of both MS and old age.   The saying goes that “my MS is not your MS” and thus it would be wrong for me to say that heavy metal music is not conducive to those with multiple sclerosis.  Maybe some of my MS friends enjoy the extra amp power, screaming vocals and battling bass that make up this music genre.  Maybe you even find that the commotion that roars out of the intense drum kit comforts you.  If so, then you, my friend, are weird.

 

Yet, I found myself at an Alice Cooper/Motley Crue concert last week which is about the last place I pictured myself being on that Sunday evening.  I went because my dear friend from forever has loved Motley Crue since we were little kids playing air guitar on tennis rackets we didn’t know how to use.

Serena had never seen them live and since they claim this is their final tour, she bought two tickets.  With the craziness that comes from August, she couldn’t find any other metal heads available to go with her.

A concert is a concert and I AM a classic rock chick.   I decided to offer to go that way my friend would have company and could treat herself to a drink or two and I could be her designated driver.

Even though we’re close friends, Serena and I are very different.

She is wild and I tend to be calm.

She’s impulsive and I’m cautious.

She’s  shameless; I’m shy.

She’s spicy; I’m sweet.

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She’s crazy in a fun way; I’m crazy in an “annoying pain in the butt” way.

On paper we are as different as different can be.  Yet, we work.

We are a motley duo.

When we arrived at the venue, my first aging/MS frustration took place right in the parking lot.

I had more concert experience than Serena and in her excitement, and my ridiculous fastidiousness, we arrived super early.

Which would’ve been fine if I remembered tailgating.

How could I have completely forgotten that part of the rock concert experience?

I didn’t want to just sit in the car and so I ventured out to be social.  I talked to a family in the car next to us-their pre-teen daughter had grown up on 80’s hair bands.  The second frustration then occurred.

Without preparing for tailgating, I was standing outside of the car and standing for me is not very comfortable.  Plus, in front of our car was a pickup truck with 5 good looking guys hanging around it and they weren’t talking to me!

 

They weren’t rude and thanked me when I caught their fly away shopping bag, but that was it.  No flirtations.  No offer to sit on the bed of their truck.  No innocent conversation.

When had guys stopped wanting to talk to me?  It was depressing.

Some may say that perhaps I should have started talking to them and that by my being shy, they might not have known I was up for being social.  Serena could have fixed this issue in a heartbeat but still in the car, she was very busy.

She was worried about security not letting her make the most of her Motley Crue experience and was thus in the process of concealing important items in her bra.

To say that Serena is well endowed is like saying Motley Crue plays soft rock. (Serena’s favorite metal edged ballad Without You non withstanding.)  Endowed just doesn’t cut it.

 

She was working on a tip her daughter had given her,

“The good thing about having big boobs is that you can use them to hide stuff.”

By the time I gave up on visiting and got back in the car, Serena had managed to stuff 2 Vodka Citron nip bottles, a full pack of cigarettes and her camera all into her bra.

And you couldn’t tell!  Even me who has known her forever couldn’t see any evidence.

I panicked  when the female security officer said she was going to pat her down, but Serena didn’t even blink.  And then we were in.

There was a lot of standing,  Standing to get in.  Standing to get patted down.  Standing in the bathroom line which of course, was crucial!  Standing to get beverages…Standing to watch the bands.

 

At this particular arena when everyone stands, you can’t see a thing, not even on the close up screen which is so low to the stage it hardly seems to help.  It hurts to stand too long and so I had to periodically keep sitting.  I did my best but missed a lot. But I could guess what was going on by the rhythm of the butts seat dancing in front of me.

It wasn’t long before I had to down two Aleve tablets and pull out my bright pink ear plugs.  Why bright pink?  I was pleased to see other people with ear plugs but only mine were bright enough to light up the stadium on their own.

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At one point the band appeared on a smaller stage close to us and it was all I could do to stay upright as Serena jumped over me in her sprint to get to Vince Neil– think teen girls rushing the stage when the Beatles hit America.

How did this particular concert make my friend younger while it made me older?  Achy feet, achy legs, and achy ears.

At least I wasn’t whining about the temperature…..”I’m cold, can I borrow your sweater dear?”

But here’s the thing; though Motley Crue is not my kind of music, and not very MS friendly, in balancing things out, I did manage to have some fun.  I got to see flames shooting out Nikki Sixx’s guitar and Alice Cooper get his head chopped off in a guillotine, both of which were pretty cool.

 

And I did manage to seat dance all through Smoking in the Boys Room, even if it wasn’t quite as energetic as I seat danced at the last Stones concert.

And most importantly, my friend loved it.

I can tell by the hundreds of videos of the concert she’s posted on Facebook.

(Hide your camera in your bra friends-it’s the only way.)

Funny how a Motley Crue concert, like life and even life with MS, can play out when you balance, seat dance every once in a while, and rely on friends.  Relying on friends is key.

 

When I texted my Stones friend about the epic fail trivia question she pointed out that Come On was the first Stones single to chart in the UK even though it didn’t make #1.

Which helped me to feel better about being old and missing that important answer. At least I was close.

Yes, MS or no, friends help keep us young

Especially the wild ones….

 

 

Plumber Crack

From young to old, courtesy of multiple sclerosis

Last week I minimally and tentatively gave multiple sclerosis credit for something good-my being mistaken for someone not old enough to legally purchase alcohol.

Well I was wrong!   MS reared its ugly, aging head once more just so I didn’t go too crazy with sentimental gratitude.  For the record, I may never buy alcohol again for fear of breaking the being carded spell.

Allow me to set this latest scene for you.  This time last year I lived in a little house on the edge of the woods.  My then landlord lived in another town and if there was a problem, he would come fix it.  Simple as that.

Otherwise I never saw him.   Since he didn’t live near me, he didn’t care what the yard looked like and left the simple maintenance up to me.  Suffice to say after several years I was actually living in a jungle. Since I can barely keep up with basic maintenance on myself, let alone the inside of my living quarters, the outside was left to its own devices.

Now I live in a bigger, shared building with very kind, very dedicated landlords who also live on the property.  They are so dedicated that they are on top of everything!

 

Driving by my rental you will likely notice how pristine everything is and should you choose to walk across the lawn, you might actually emerge from your walk not covered in blood sucking ticks hiding in the overgrown foliage.

One would think this set up would be a good thing, that having landlords who address issues before they arise and take care of their property at no extra expense to the tenants would make said tenants happy.  One would be wrong, at least if one of those tenants happens to have multiple sclerosis.

To quote my friend the Grinch, “oh the noise, the noise noise noise! The one thing I HATE, all the noise, noise, noise, noise!”

 

Strange how I did great at the Rolling Stones concert but show me a hammer or a skill saw and I panic.  It must be something to do with classic, beautiful, somewhat organized sounds verses crap.

First, the carpet upstairs needed to be replaced.

Then the roof needed to be re-shingled.

I left my house during the first re-shingling day but even that was tricky due to MS.  The contractors had placed a huge blue tarp over the front door and I could see ladders on the other side of the tarp but no opening.  What if in searching for an opening I knocked one of the cute contractors off his ladder?

I had a back entrance but was afraid to use it as since I never did, I could not remember which key I needed to lock and unlock that door.   I was stuck for a bit until I saw the very edge of the tarp to my far right.

This is how I handled my dilemma.  I leapt off the front steps towards the direction of the tarp opening and into the bushes.   Then I got up, dusted myself off and ran away.

After the roof was fixed, several windows needed to be replaced.  Then said windows needed to be painted.  Nobody told me about the painting and so it was that I woke up one morning with the sound of someone singing while they tried to come through my bedroom window.  And that was just the painting on the outside.

 

The worst of the property upkeep is that of the landscapers.   My landlords are so nice that they tell the landscapers they can come whenever they want.   Which is why it is not unheard of for the landscapers to show up after midnight with their weed wackers, lawn mowers and leaf blowers.

Ok, my particular version of midnight due to my MS sleep issues, which probably translates to 10AM for the rest of the world.

I swear I am grateful for the care my landlords show the rental, I really am.

But I would be even more grateful if MS didn’t make enduring all that care so downright painful.  Once a hideous obnoxious noise (hammering, motoring, bad singing) gets into my MS head, I am down for days with the most killer headache one can imagine.

So the above was what was going on in my apartment for the last several weeks.  But that was not all.  I was also having plumbing issues. On any random, given day it was 50/50 whether my toilet would flush properly or not.

Plunging would not fix the problem.  I went online to research how to be my own plumber.  All the tricks I read about did not work.

On three different occasions I had to knock on my landlord’s door to report the plumbing issue. And on three different occasions he couldn’t fix it either.  And so, on three different occasions a plumber was called.   The plumber reported he had no idea why I was having such trouble.

 

I broke down.  I told my landlord that I couldn’t take it anymore and was leaving for the day to escape all this property trouble. I thanked him and his wife for their offer to use their bathroom whenever I needed it but said all I really wanted was my own toilet that worked.  I could take everything else, just please, please resolve this one issue before I went crazy.

A new plumber was called.  And it turned out, that I did, indeed, have a faulty toilet.  There had been lots of reports with the particular model as pipes in them crack easily and cause all kinds of problems.   I needed a new one.

My landlord called to tell me the problem and told me that he felt bad about all that had been going on and that he wanted to make it up to me.  Thus, he had ordered me a special ADA compliant toilet.

 

I told him I didn’t need an ADA compliant toilet.  I just needed a toilet that worked and he shouldn’t spend the extra money on something I didn’t need.  He said not to worry about the money.  He wanted to do this for me and “who knows what the future might bring with that disease of yours.”

My new toilet doesn’t have support bars around it but will easily accommodate them should I need to add them.  Just like my grandmother did with her ADA compliant toilet that she bought in her eighties.

Thus it was that exactly one week after I was mistaken for being 20 years younger than I am, I was using my new toilet for the first time, a toilet specifically designed for the disabled and the elderly.   And exactly one week after that, I had an actual birthday.  I swear you can’t make this stuff up!

 

Things have quieted down at my rental now.  And I am used to my new bathroom fixture and so far, it seems to work.  I’m only used to it at home however.  Since it is higher than others, I have to try to remember this when using a public facility.

Twice I have almost fallen on a filthy floor because I wasn’t expecting the seat to be where it was.  So I guess the new toilet is also helping me practice my balance issues?

It is certainly not helping with my exercise routine.  With my horrible bladder most of the exercise I got was from continually lowering myself onto my old normal potty.   Ah well, like we all need to do when we have MS, I will re-calculate and re-balance and be grateful to have a landlord worried enough about my future to make sure the most basic of human functions will be manageable no matter what MS decides to bring next.

In the meantime, I will just try to celebrate another birthday by not thinking about old age, young age, or MS.

But you can make sure that I am getting one of my older looking friends to buy the wine!

 

Even though it is my birthday, I want to give you a gift!   Five of you anyway.   Five readers who have signed up on Goodreads will receive a free autographed copy of MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.   Check out the link below to sign up before it’s too late!

Goodreads MS Madness Giveaway

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Here Comes Gina Romani!

An MS Positive?   Possibly.

Myself, and fellow MS’ers like me, have a tendency to blame multiple sclerosis for everything bad.  Not just everything medically bad in our bodies, but everything bad.  War, death, violence, hatred, Justin Bieber,….…you name it.  If it’s bad, it is MS’s fault.

And why shouldn’t it be?  MS is a super sucky, very serious, no cause, no cure, scary, debilitating disease.  And yes, I said the dreaded “D” word-disease: a super sucky, very serious, ugly word.  Sometimes MS deserves to be referred to as a disease and not the less ugly version of the word disease-illness. So whether it’s right to do so or not, I choose to blame everything negative on MS and you can’t stop me!

But what about something positive?

No way!  There could be absolutely nothing positive about MS, ever!   It’s impossible.

I started thinking about this recently after an “incident.”  A kind of cool incident, actually.   I was on my way to visit a friend and before I got to her house, I stopped at a liquor store to get us some wine.   And then, miracle of all miracles, I got carded!!!!

Really carded!

I had to actually pull out my license and the sales clerk working the cash register stared at it for several seconds before handing it back!

I was beyond thrilled.  I’m way, way past my under 21 years.  I don’t want to tell you by how much but let’s just say I was diagnosed when I was 40 and that was a few years ago.  You do the math.

(If it’s a brain fog day then you may want to ask a grade schooler to help you.)

True, the lady who carded me was wearing super thick glasses.

And true, I had a ton of makeup on as I had just come from a local cable TV station where I was interviewed and I needed lots of makeup to look decent.  (And that was just a local cable show- how much makeup will I need if I ever get on my mom’s personal favorite- the Steve Harvey show?  Is there enough makeup in the universe?)

Still, I was ecstatic!  If anyone wants a natural high, get carded.  It will give you more energy and pep than all your meds combined.

As I was carrying the wine and skipping to my friend’s house, a worry did enter my happy thoughts.  What if I didn’t have my id?  Then what would I have done?

If I ever lost my license I would be so stressed that I would definitely need wine and wouldn’t be able to buy it!!

Then what would I do?  Resort to being the lame teenager hanging outside of the liquor store and sucking up to old people to get them to buy for me?  No, I couldn’t have that.  That is beyond humiliating now.  It wasn’t that humiliating when I WAS a lame teenager, but now? No, I just can’t do it.

I made a mental note to dig out my fake id from college.  The id featured a horrible picture of me with the name and stats of some girl from New Jersey named Gina Romani.

Dear Gina, wherever you are, you got me through a lot of parties- thank you!

As fake ids go, mine was pretty bad.  But it worked in about 30% of the liquor stores I tried so it was a crucial part of my life.

And it was somewhat famous, too.  My friend’s mom thought it was so pathetic that she took to calling me Gina Romani all the time.   To this day, we will be some place in our small town, church or a restaurant say, filled with people who know us, and she’ll yell- “Hey Gina, how ya doing?”

And people will look at her like she’s crazy.

“Has she lost it?” they will ask.  “That’s her daughter’s friend Yvonne.  Why does she think her name is Gina?”

And so, to spare any trouble in the future should I lose my real id, I vowed to find my fake one as soon as I got home.

My joy turned to grief when I pulled my house apart and could not find it anywhere!  How could I have lost my fake id?  I may need it now that I’ve been carded and yet my MS brain has misplaced it- never to be found again!

And there’s the problem.  It’s MS’s fault that my fantastic mood turned sour and uplifting feelings turned to worry.  If I lose my license what will I do all the times I may get carded in the future???!!!

Sigh………

I decided to focus on the good, the fact that I got carded in the first place.   This was a good thing and it had absolutely nothing, and I mean nothing, to do with MS at all.

Except that I was all doled up and wearing makeup to talk about my MS book.

Still, no.  I won’t give MS any credit for the good thing that happened, my being mistaken for a teenager.

But with the fatigue that comes from MS I do need a lot more sleep; usually somewhere between 10-12 hours a night depending on how effective my bladder meds decide they want to be.

And some people call that much shut eye beauty sleep.  I tend to doubt my sleep has anything to do with beauty but maybe that much sleep from MS fatigue is actually resting and smoothing some of my wrinkles?

I was still reluctant to give MS any positive credit for the “incident.”   But then I remembered that since my diagnosis I have been eating better and drinking more water (when I’m not drinking wine of course,) and supposedly, those two things are good for you and can perhaps make you look younger?

And stress about MS helped me to mostly kick the smoking habit and smoking supposedly ages you.

And, I have made many new friends since my diagnosis and good friends cheer you up which makes you less stressed which may make you seem younger?

Leave it to multiple sclerosis.

As my body feels like it’s aging at the rapid rate of two years every day, MS could quite possibly be helping me to look younger.  Maybe I have to give MS some, teeny tiny bit of credit for something good?

Or maybe the liquor store clerk just needs thicker glasses.

Either way, I’d sure feel better if Gina Romani was still hanging around….

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I would like to remind all of my awesome blog readers who may be on Goodreads that you can still enter my MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis giveaway!  You have until June 22 to possibly win one of five autographed copies.  And if you’re not already on Goodreads, it is easy to sign up and become a part of this awesome social network for book lovers!

Goodreads Giveaway