The Curious Case of Multiple Sclerosis Part 5

Bored as a Board

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When I was growing up, my mom or my dad, my sister, my grandmother, someone in my life used to like to say, ”if you’re bored, you’re boring.”

This phrase has been ingrained on my brain since then. I want to do everything I can to not be boring, although I may be losing the odds on that one, and so I have a ton of things to do that keep me from being bored.

I have my regular “to do” lists.

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I have my writing “to do” lists.

I have my “want to read” lists.

I have my “want to watch on TV” lists.

I have “my various, fun ways to get exercise” list.

I live right near a beach for goodness sake!  Just watching the ocean waves change in shape and strength is pretty exciting on its own.

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And then there are the tasks my day is not complete without- catching the weather report, playing SongPop on Facebook, reading my Bible, checking in with my friends to see how they are and so on.

The point being, I have no reason to be bored, ever!  And not just because of things I should do or need to do, but because I have a ton of things that I want to do.  And considering how MS robs us MS’ers of precious hours in our day, I should be pretty busy during those hours.

Nonetheless, just the other day, I commented that I was bored.  How’s that even possible???

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I hesitated to tell anyone this, except for all you readers and those who may randomly come across this post in a basic internet search, for fear that what I would hear back is, “if you’re bored, you’re boring.”

It made no sense that I, a person who basically needs 10-20 hours of sleep a night, and who has a ton of things she WANTS to do, and who is always complaining about never having enough hours in the day, should ever find herself bored.

I was so bored in fact, that I looked up the word.  Two synonyms of the word are fatigued, tired, and inattentive. Ok, that’s actually three synonyms but my brain was too inattentive to do that math correctly.

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This in depth internet research was actually helpful.   Even though I probably would have blamed my boredom on MS anyway, as that’s what I always do when something annoys me, the online definition made it legitimate to blame multiple sclerosis.

If the words fatigued, tired and inattentive don’t prove that this state of being is the fault of multiple sclerosis, than what does?

I researched more even though I was exhausted and all I wanted to do was lie down flat and stay that way, which made me picture an actual board.  I was, officially, bored as a board and it was MS’s fault.

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Leave it to multiple sclerosis to have yet another frustratingly, contradictory aspect that I like to call “curious.”

MS greatly zaps time from an MS’ers day due to how much longer it takes us to do the most basic of things and how much extra rest we need.  Yet in the few hours you have left in your day MS can cause your brain to become so unhinged, so completely devoid of any activity, that you have no motivation to do anything you want to do.

(For the record, antonyms of the word bored include energized, exhilarated, refreshed- not MS words at all.)

So being bored when you’re not bored and have no time to be bored is another curious case of multiple sclerosis.

But what to do about it?

I searched more and found that BuzzFeed Life has a list of 17 Things to do when you are Bored Out of Your Mind written by Leonora Epstein.  What was on the list?  Make more lists!

How is that helpful??  I already have lots of lists.  Also among the ideas were do a puzzle or plant an herb garden.  Clearly this list was for people with just regular old boredom.  It was not designed for people with the mega boredom that comes with multiple sclerosis.

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I needed to know how to combat this useless, brutal time of nothingness that MS seems to insist I use to waste what little of my day that I am given.

I needed to know things I could do that didn’t require any real brain function at all.

So I started a new list, a list of 18 Things we who have MS can do when we are bored-

Sit Still

Lie Down

Jiggle your right leg up and down

Jiggle your left let up and down

Look at the ceiling

Breathe

Look at the picture on your wall

Look at your hands

Look at your feet

Pull up your socks

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Look up the word ‘boredom’ on your computer

Swivel in your swivel chair

Rock in your rocking chair

Open the curtains and look out the window

Close the curtains and sit back down

Wonder how the spider got in your bedroom

Count this list to see if there are really 18 things to do listed

Look for lint on your living room rug

(NOTE-don’t even try to collect the lint, that is a project for when you are not bored!)

Feel free to use my list whenever you want readers; I’m all about helping others.  I want to do my part to help make sure that MS or not, you are never bored.

Because supposedly, “if you’re bored you’re boring…”

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Image Credits

Ocean foam image courtesy of artur 84 at FreeDigitalPhotos.net

Question mark image courtesy of Master Isolated Images at FreeDigitalPhotos.net

Busy woman cartoon images courtesy of jesadaphorn at FreeDigitalPhotos.net

Wooden board image courtesy of nuchylee at FreeDigitalPhotos.net

All five other images courtesy of Stuart Miles at FreeDigitalPhotos.net

 

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???

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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.

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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

 

 

Girl Guitarist Image courtesy of stockimages at FreeDigitalPhotos.net

Insomnia Girl Image courtesy of debspoons at FreeDigitalPhotos.net

Happy Emoticon Image courtesy of farconville at FreeDigitalPhotos.net

Angry Emoticon Image courtesy of farconville at FreeDigitalPhotos.net

 

 

The World is coming to an End Part 1

Multiple Sclerosis is uncool

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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.

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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.

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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?

evel barbie

 

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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.

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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?”

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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!

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Guess I still have that skill after all….

Lessons from an MS Semi Pro

Things NOT to do when you have multiple sclerosis, things your neurologist might not mention

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A couple of weeks ago, I was preparing to do an injection of my DMD. For all you MS newbies out there, DMD actually stands for Disease Modifying Drugs.

I’m not being condescending defining that for you; I only recently discovered what it stood for myself.  Before that I thought it actually stood for the Don’t Make me Do them meds or those Damn MS Demon shots.

Despite all the oral medications that have been recently developed, I’m still doing shots.   Even though I don’t like them, they seem to be working.

In order for me to get through the self injecting process, I need to use the auto injector.  One push of an awful button and then I’m done.  But this time, when I pushed the button, nothing happened.

As far as I could tell, I had done everything right.  In investigating this issue, I held the tip of the injector up to my face and looked inside.  HUGE mistake.

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The injector fired suddenly and thankfully, miraculously, I was able to jerk my hand quick enough to keep the meds and the needle from my eyes.  Instead, the medication dispersed all over my thermal Bruins blanket which was just silly.  I have owned this blanket for 15 years and it is still one of the best Christmas gifts ever!  It is super warm, super strong and super healthy and it doesn’t need any drugs.

(Unlike the time I used one of my injections to fix a wobbly coffee table but you’ll have to read MS Madness! for THAT story.)

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Anyway, after the auto injector blunder I realized I had just learned a valuable lesson in an MS thing not to do.  Then it occurred to me that this incident happened on 12/17, the five year anniversary of my MS diagnosis and I didn’t even realize it at the time.

I never forget the date of my diagnosis but I also never remember it either.  (If that makes sense to you, you may have MS.)

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The coincidence of the trouble with this particular shot made me think back to the many other lessons I have learned on my MS journey.  I decided the right thing to do would be to share them with you.

So here you go- I hope they help.

Note- not all of them are MS related but they are all MS related.

(If that makes sense to you then, again, you may have multiple sclerosis.)

The first one we already covered- don’t look down the barrel of a loaded gun- oops I mean, loaded auto injector.  (But don’t look down the barrel of a loaded gun either- that’s not good.)

Secondly, if you are prepping your upper left arm to give yourself a shot, don’t inhale the alcohol swab. It’s not Jagermeister.  It won’t taste good or be any fun.

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You CAN inhale the alcohol swab if you want to go on your own weird cleanse as you won’t feel like eating or drinking anything for days.  Except pretzels.  You may want lots and lots of stale pretzels…

Third-don’t look back after a cute guy smiles at you.  You may just wind up tripping over the threshold of the door you are supposed to be coolly walking through, not awkwardly falling through.

The fourth lesson is similar to the first.  If you are deciding whether or not you like the scent of an air freshener, don’t spray it into your face to figure it out.  There are easier ways to get the information.

The next two lessons take us into the kitchen.  The fifth is that salad dressing is for salad, maple syrup is for waffles.  Perhaps it might help to remember if you don’t keep them side by side on a shelf in your refrigerator.

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Sixth, don’t spray your kitchen floor with cooking spray.  Believe it or not, that’s not what it’s for.

And it doesn’t matter how much you like hockey, the sprayed kitchen floor doesn’t cut it.  Nor does it mean your favorite hockey team (the Bruins) might show up just because your kitchen is now as slipperery as an ice rink.

Maybe if you have multiple sclerosis you just shouldn’t use spray things at all…

The seventh lesson is this-don’t sell drugs.  Not even if you have the purest of intentions.  Not even if you are offering such a discount that they wind up being free.  Not even if the drugs will go to waste if you don’t pass them on and people desperately need them.

(For the ugly details on how I learned that lesson check out my prior blog post Lawbreaker.)

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Since it was near Christmas time when I almost accidentally injected my eyeball, the next two lessons are related to the season.  The eighth lesson is don’t try to wrap presents with double sided tape.  It will not work, not even if you’re Martha Stewart.  Better yet, don’t buy double sided tape, even if it’s a good deal and looks just like regular tape except for the tiny words that say it’s double sided.

The ninth lesson is don’t buy Christmas cards with glitter on them.

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Yes, the glitter is pretty.

Yes the glitter is festive.

But is also a pain in your injection bruised behind.

It will get everywhere.

It will multiply like termites.

It will cover you and everything around you.

It will get in your hair.

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It will get on your teeth,

It will get on those Christmas cookies you are not supposed to be eating.

It will get on your double sided tape and the two will conspire to enfold you into an endless glitter filled world.

The tenth and last lesson is the most important.

Here it is-

Seriously, very seriously, don’t take yourself too seriously.

Here’s hoping for a healthy, happy, humor filled holiday for all of you!!

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Still a Little Lazy

Too Lazy Even for Me Makes an MS Comeback

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The plan was to post a brand spanking new (where does that weird expression come from anyway?) blog today.  It really was.  Especially since the last two blogs have been repeats.  

But then important things got in the way like visits with friends, a big Bruins win, Facebook, Christmas preparations, church, MS fatigue and the Season 1 True Detective DVD rental from the library.  

In the balancing act of multiple sclerosis that we MS’ers do all the time, well a brand new blog got pushed off the list.  I was just too tired.  And maybe a little lazy after all those delicious Christmas sweets.  

Which got me thinking about a blog I wrote in 2012 about just how lazy we, as a human race, can be.  

And so I decided to repost this blog from 2012.

td And I promise, no I SWEAR, that I will post a brand new blog NEXT week.  As long as I have finished drooling over Matthew McConaughey in this riveting new drama…

Too Lazy Even for Me

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So I know that I mention (complain, whine, lament) here a lot about the extreme fatigue that comes with MS.   But it is a fact and with this fact, comes the fact that many an MS’er has learned to take shortcuts to save energy.

Most of these shortcuts involve skipping unnecessary tasks.   Some MS’ers are pretty good at this.

Me, I’m still learning.

Even though I skip watching TV commercials as much as possible (especially in an election year- so glad THAT’S over), I was drawn to a particular commercial recently.  I think what caught my attention was that the commercial started by asking the question “how many buttons does your car have?”

I had never really thought about it.  My car is a paint chipped 2005 Toyota Corolla that has served me well since I bought it pre-owned in 2004 (don’t ask.)

With the exception of the incident where a tree fell on it during a freak winter storm (another don’t ask but now you have the root of the paint chip problem,) I have been very happy with it.

It has buttons but I have never counted how many.  I just push them and go.

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The commercial was for a 2013 Cadillac XTS and the reason why the commercial was asking about buttons was because this new model of Cadillac has far less buttons than your average vehicle.

The car has sensors that tell the car’s control panel (essentially its dashboard) everything that is happening on the road around you.   It has a Cue which means it can give you infinite listening features as well as unlimited access to all your contacts.

It can connect up to ten different Bluetooth devices and it has Natural Voice Recognition so that you don’t even have to lightly touch the control panel, you can just tell the car what you want it to do.

You can buy this car and go from a few buttons that you have to manually push in your current car to this car where you don’t have to move at all!

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Maybe it’s me, and keeping in mind that I am all about conserving my energy, but I can’t help thinking that if I am too tired to push a button, then I am probably too tired to be behind the wheel.

Arms too achy to maneuver the steering wheel? Perhaps I don’t belong behind the steering wheel at that particular time.

Only a day after seeing that commercial, a friend sent me an email warning about a problem with newly issued credit cards.  All you shoppers out there, take note.  It seems without you even requesting it, credit card companies are issuing new cards that have a teeny tiny wireless symbol on the back of them.

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What this means for you is that you no longer have to stress yourself out with the tedious task of swiping your card thru the credit card machine when you purchase something.   You can just pull your card out of your wallet and the WIFI signal will tell the credit card machine all your card info.

Thank goodness!  After a long day of hitting the stores, that little swipe at the register completely does me in.

Again, maybe it’s me, but I am thinking that if I am too tired to be swiping my card for a whole two seconds when I buy something, maybe I shouldn’t be shopping.

Let’s see- I’d really love the new Cadillac XTS but I am just too exhausted to swipe my card.  Oh, I can just hold my card while I walk by the machine.  Great- let’s do it, the Cadillac is all mine!

I received the email warning because, (surprise surprise,) thieves have learned how to use these new cards to steal from you.  They just hold up a flat screen as you happen by a credit card machine and they are good to go.

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On the days when my fatigue really sets in, if you don’t know me or my MS you could try to call me lazy.  (Try it all you want but I bet I will suddenly find some energy to belt you.)  But in my super long list of things that are exhausting, pushing a button and swiping a card don’t come up.

If they could make a gadget that automatically gives you a shower, puts on your clothes and make up, and styles your hair, I might be interested.

How about a gadget that cooks dinner AND washes the dishes?    Now you’re talking.

If I could recline on my sofa resting my very achy body and just tell a gadget to do the laundry, I might get excited.  I’m not too particular, I would even understand if I had to push a button to activate the thing.  As long as I didn’t have to push the button more than once or push it too hard, I’m all for it.

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Hey Salt-N-Pepa, the eighties are over, we don’t have to push it anymore.

Unless we want too of course.

Have a fabulous New Year dear friends!!!

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12 Days of Christmas, MS Style

A multiple sclerosis Christmas carol

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As you finish up all your last minute holiday preparations, please enjoy last year’s Christmas ditty.  And some fun giggle induced cartoons as well!

I love Christmas.

I love Christmas songs.

But personally, I don’t love the 12 Days of Christmas carol.  I find it obnoxious.  Recently however, I learned that it was actually an important and secret song.

'How come I never see you in church?'

Folklore has it, that this carol was written in the late 1700’s in England as a code to help children study their catechism as Christianity was forbidden at the time.  A partridge in a pear tree represents Jesus Christ, two calling birds represent the apostles Peter and Paul, three French hens represent the Holy Trinity, etc.

Weird, as my grandmothers always taught me that the Holy Trinity was Portuguese, but what can you do?

As a devout Catholic who totally gets the reason for the season, I feel bad calling the song obnoxious when is seems like it should be something to be appreciated, even just slightly.

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Kind of like how there was a brief time when I actually appreciated multiple sclerosis.  And by brief I mean minutes, no, actually seconds.

This was when I received my diagnosis after I had diagnosed myself via the internet as having either early onset Alzheimer’s disease or acute and untreatable insanity.  MS was actually a relief at that moment.

Now it is just absolutely obnoxious and that is on one of its very rare good days.

Since I am in the Christmas spirit all year long (but now that it IS Christmas, it is ok to be in the Christmas spirit) I thought I would combine the two.

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So here friends, is a multiple sclerosis Christmas carol, obnoxiousness and all.

On the first day of Christmas MS brought to me: one ach-y bod-y

On the second day of Christmas MS brought to me: fingers all tingly

On the third day of Christmas MS brought to me:  three MS hugs

On the fourth day of Christmas MS brought to me: lots of blurry vision

On the fifth day of Christmas MS brought to me: brain completely spacey…..

On the sixth day of Christmas MS brought to me: every day so sleepy

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On the seventh day of Christmas MS brought to me: feeling kind of dizzy

On the eight day of Christmas MS brought to me: bladder very leaky

On the ninth day of Christmas MS brought to me: four shots so nasty

On the tenth day of Christmas MS brought to me: head feeling crappy

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On the eleventh day of Christmas MS brought to me: legs acting lazy

On the twelfth day of Christmas MS brought to me: balance not so steady-

legs acting lazy, head feeling crappy, four shots so nasty, bladder very leaky, feeling kind of dizzy, every day so sleepy, brain completely spacey, lots of blurry vision, three MS hugs, fingers all tingly, and                   one, ach-y bod-y…..

Let’s sing it together, shall we?

NOT!

Ahhh friends, a very healthy and Merry Christmas to you all.

And for my non- Christian friends, may you have a healthy and happy season of all things good and not MS related!

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*******Note*******

I wrote this particular blog over the weekend of 12/13/13-12/15/13- I swear I did.  On 12/18/13 a friend and fellow MS’er posted on Facebook something similar that was attributed to the Must Stop MS Support Group.

I am very, very sure I didn’t copy them but it is possible that in years past I got this idea (the 12 Days of Christmas MS version) from somewhere else and just don’t remember it.

I would like to think instead, however, that great minds think alike!

If that doesn’t work, I will blame using an idea used before on MS.

Yea, that’s it.  If I subconsciously stole this idea it is all MS’s fault!

happy holidays

Two Years Later- Still December Dates

An MS’er looks at the calendar

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While this blog was written two years ago, since I just returned from the same trip, and dates do not change, I thought I would offer it to you again.  Mostly because I am way too wiped out to come up with anything new this week….

It’s the Monday morning after a month long stay in another state, visiting relatives.   My family and I had returned late on the previous Thursday evening.   The next day it was all I could do through my fatigue to go to the post office and pick up the collected mail.

(I had written about after travel stress and mail previously- check out the blog post from last year’s trip, Its On My List.)

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I spent the weekend alternating between resting and going through the mail, resting and sorting the mail, resting and paying late bills, and resting and responding to other mail.

Before I stepped into the shower this Monday morning I looked at my calendar and saw written for today, 12/17/12, “confirm insurance, get approval and schedule MRI.”

While I was gone, changes had been made to my insurance and I knew getting this straightened out was the day’s priority.  Yet in the shower, the date was bugging me.  There was something more to 12/17, but what?

It didn’t help that December dates are pretty busy for me and not just because of the huge holiday that everyone knows about and adjusts their month around.

(You know you do- even if you don’t celebrate Christmas you are making plans as all your favorite places are closed that day!)

It’s also a birthday galore month for me (besides the big guy’s of course.)

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This particular December month is filled with the birthdays of one nephew, two cousins, an aunt, a niece-in-law who is also the mother of my two great nephews, a friend turning 40, another friend who turned 40 last year,  a third friend who I thought was turning 40 as my MS brain completely forgot we celebrated her 40th last year with the other friend who turned 40, and a fourth friend who is my same age but who I can never remember if she is younger than me thus hitting my age this month or is older and is hitting the next dreaded year first.

At one point I discovered that a cousin-in-law I have grown particularly close to this past year also had a birthday this month that I almost missed-thank goodness for social media birthday updates.

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While watching the Rolling Stones 50th anniversary Pay per View concert at a friend’s house, I was reminded that Keith Richards birthday was coming up (12/18/43 for those who would like to note it on their own calendars.)

I have always been a Stones fan and think Keith is the coolest of the cool and one of the most talented undead humans on our planet.  But remembering his birthday is a bit extreme for my taxed brain.

Perhaps I remembered because I had listened to the audio CD of his autobiography Life this past summer. Still, retaining the actual date is random.

keith

(Speaking of MS as this is an MS blog, did you know that Keith had a beloved aunt who suffered from MS?  He has a real understanding and sympathy for what living with MS is like.  How much closer to perfection can this rocker get?)

And I don’t care what all these folks say, they must have gotten ripped off from the birthday fairy or Santa Claus when they were kids.

Anyway, what is up with 12/17? There is that whole end of the word thing but that is scheduled for 12/21.

birthday fairy

I finished the shower and made calls and miracle of all Christmas miracles, the calls went smoothly and I scheduled my next MRI.  It wasn’t until evening while I was writing on my calendar a reminder to stop taking Aleve 4 days before the MRI (and already bemoaning what an achy miserable blob I will be those days) that it FINALLY occurred to me what it was about 12/17 that was bugging me.  12/17/09 was the day I was diagnosed with multiple sclerosis.

Here is one of the many weird ways MS works. Every MS’er I know (me included) automatically remembers the day of their diagnosis. I can recall the date of diagnosis quicker than I can recall my social security number.

Yet, looking at the calendar on the exact day, and doing MS related errands involving this sucky anniversary, I couldn’t get my head around why this date was flashing like a black flag in my tired MS brain.

question mark

Oh, but the memory the understanding of the date brought.  Three years ago I was a hurting, exhausted, smoking, depressed, stressed mess working in a job I generally enjoyed but was the root of a lot of the stress.  And I was barely walking.  Yet I was trying to focus on the spirit of the Christmas holiday despite MRI’s and doctor appointments.

Today I am less hurting, not smoking, less stressed, not depressed, better walking, not at that job, less of a mess.

I’m still freaking exhausted ALL the time though and am about as sick of dealing with fatigue as folks are sick of hearing me whine about it!!!

I have discovered skills that I didn’t know about three years ago (writing and public speaking but I guess referring to them as skills is really up to readers and the few audience members I have encountered thus far.)

dory memory

And clearly, I am still as spacey as I was back then as evidenced by my spending the day trying to figure out why this day was standing out even as I repeated the same day to MRI people scheduling my three year MRI!

Here is another thing that has not changed.   In 2009, the most important date was the one coming up the following week.   Even through the pain and the fear about what was wrong with me, 12/25 was the most important item on my calendar.

If it is all the same with you, I will continue to focus on the biggest date of the month.  So for the others (12/3, 12/3, 12/5, 12/15, 12/16, 12/17, 12/18. 12/19, 12/24, 12/27, 12/28, and 12/29,) your dates are ok on my calendar.

But the one that brings me the most joy is 12/25.

Merry Christmas Everyone and whether you celebrate Christmas itself or not, a healthy, blessed holiday season to all……

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PS  Helpful holiday gift hint- MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis makes a fun gift for everyone!

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The Yucky State Grinch

A multiple sclerosis book review, sort of….

desert

Once again this New England girl is visiting a state in the southwest and I’m having trouble adjusting.

I do not like this state.

I won’t mention it by name here as I don’t want to offend any of my readers.  Perhaps they actually like this state.  But I do not. To me, it is without a doubt, a yucky state.

You might say that is not fair for me to say.  Many, many people love it here and even retire here, despite its yuckiness.

But before you judge me for unfairly judging a state, please allow me to state my case.

sw map

There are no seasons here.  The weather goes from nice to hot to super hot to hotter still.  Where is the snow?  Where are the changing colors of the autumn leaves?  Where are the cool breezes?

This state is surrounded by mountains, dessert and land.  Where is the ocean?  Where are the lighthouses?  Where is the whiff of low tide that only a true New Englander can appreciate?

Speaking of smells, the one thing I thought was cool when I first visited was that there are cotton fields all over and that, to me, was interesting.  Until allergies I never knew existed rolled to the front of my runny nose, itchy eyes, and sneezy sneezes.

cotton-fields-16734132

And then the smells followed.  Seems the best way to fertilize these fields is with manure and so everywhere I go and with everyone I see, I smell a messy diaper.  Which is super stressful as the whole reason I am in this state is to visit my two youngest nephews, one who is in diapers and one who is recently potty trained.

These poor children can’t get away from me fast enough as I’m always checking for accidents or a messy diaper.

(And truth be told, I’m visiting their parents too…)

Perhaps, if I’m being honest, the fact that I think this is a yucky state just might have a teeny tiny bit to do with the fact that I hate that these boys live so far away.  One may argue that it is not the state’s fault that these little cuties live here but I irrationally beg to differ.

Plus, to add to my frustration, these little ones are actually great nephews; which makes them great.  But it also reminds me that I am freaking old!

boys and blankies

When did their dad (my very first nephew) get old enough to have two little boys of his own?  I’m going to blame that on the yucky state as well.

Like I l have learned to do with multiple sclerosis, I tried to power on through the bad and tried to make the best out of visiting a yucky state.

(Of course I don’t make the best out of bad things until I have whined first about them over and over and over again.)

So, visiting in late November when the weather was anything but November like, I knew the best thing I could do was treasure my time with these awesome boys.  Since I wouldn’t be here during Christmas, I decided I would repeat the tradition I had started with their dad by reading them the best book in the world, How the Grinch Stole Christmas.

mean grinch

Dr. Seuss is the man!  I knew I could share his Christmas magic with my great greats. But the neighborhood library, which was huge, didn’t have it!!!!  How’s that possible?

They actually did have one copy but it was out. Shouldn’t there be like ten copies of such a classic?  My frustration was just another mark on the list of things that made this particular state a yucky state.

I fumed.

I seethed.

I reasoned I still needed a book for the children and so I grabbed some other Dr. Seuss tittles.  One was a Dr. Seuss book I had somehow missed in my literary exposure.  It was called I Am NOT Going to Get up Today.

Get_up

It was the perfect book, especially for someone grouchy and who has MS.  It’s like the anthem of MS’ers everywhere; a book about someone who has just had enough and refuses to get up for one day.  And it’s okay!!!

It’s like Dr. Seuss himself wanted to let people like me know that once in a while, it is ok to give in and give up and just rest for a day.  And since Dr. Seuss is a member of the esteemed medical profession, he knows what he’s talking about!

The book includes classic lines like,

In bed is where I’m going to stay.

And I don’t care what the neighbors say!

I never liked them anyway.

And,

I don’t choose to be up walking.

I don’t choose to be up talking,

The only thing I’m choosing

is to lie here woozy-snoozing.

So won’t you kindly go away.

I am NOT going to get up today!

Dr. Seuss

Dr.-Seuss-Logo

 These brilliant words by a brilliant man made me so happy and relieved.  It occurred to me that if not for this yucky state, I may not have discovered this MS masterpiece.

That thought led me to think of The Grinch himself.  His grouchiness wasn’t totally justified.  Though no one quite knew the reason, he hated the whole Christmas season.  And that was not fair to Christmas.

happy grinch

But when he learned that maybe his Grinchiness was missing the good of the holiday, he set out to make amends and find out what Christmas was all about.

Perhaps I need to do that with this yucky state.

Perhaps I should apologize to those who live here and truly appreciate it.

Perhaps I should finally take responsibility for teaching my cousin’s four year old son that this state is a yucky state.  We were doing a puzzle of the US and I shared my opinion with him.  How was I to know he would then announce to all he encountered that this was a yucky state?

us map

At the time, I was pretty impressed.   His parents, not so much.

Perhaps, like the Grinch, I have to learn to appreciate the good that comes with the bad and not blame a state if it happens to be where my great greats live and is too far away.

Once again, Dr. Seuss has both re-assured me and taught me.  So I will no longer feel guilty for the days when I am just NOT going to get up and I will try to be less Grinch-like when discussing this particular state.

stormy ocean

It sure would be a lot easier if they put a nice blue ocean in the middle of it though….

 

PS  Something tells me that this little rhyme is not really from Dr Seuss but I thought I would share it with you anyway…

seuss poem

Feeling a Little Icky, All Over Again

An MS inspired parody

mich bloated sac

Funny how things come around.

I wrote this blog two years ago and while the children I mention here are now older (both are official toddlers,) the words in this blog post still apply.  So while I rest up after one of our yearly visits with these little ones, a Thanksgiving Day visit to be exact, here is a repeat of a former spot on blog post. I hope everyone had an awesome turkey day!

What is with me and show tunes lately?   I don’t even really like show tunes yet I can’t seem to get them out of my head.

Just recently I posted a blog based on the song A Few of My Favorite Things and now the song I Feel Pretty from West Side Story is lingering around.  This is especially weird as

  1. I don’t even like that song and
  2. I really, really don’t feel pretty at all.

On this family trip my get fit plan has gone right out the window.  And, as during the packing for this journey my suitcase was too filled with toys for the little ones to add any of my nicer clothes, I am schlepping around in my least pretty wardrobe possible.

Luckily, kids don’t really notice what you are wearing. And while family may notice what you wear, they aren’t really supposed to care.

boys and blankies

So it doesn’t matter that I don’t feel so pretty.

So why is that stupidly annoying song hanging around my musical brain?  You would think the songs that would be lingering might be Rockin Robin or Riding on a Train, both songs that blast frequently from two of the kid’s toys.  But no, I Feel Pretty it is, over and over again…..

To help combat this frustrating ordeal, I thought if I actually sang the song, maybe it would go away.  But since I don’t feel so pretty, I may have to change the words to be in keeping with how I really feel.  So, on a day after one of my blasted shots, where the kids have a prior engagement and I am in a rented home with my mom who isn’t feeling well and my sister who insists on watching bad TV, here is my MS/vacation version of I Feel Pretty.

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I feel achy, oh so achy

I feel achy and shaky and uptight

And I pity the person who bugs me tonight

 

I feel icky, oh so icky

It is sickly how icky I feel

And so icky that I can hardly believe it’s real

 

(Since the state we are visiting is on the west coast and it is hotter than it should be in December)

hot flash

I feel sticky, oh so sticky

I feel sticky and sickly and tickly

It is a wonder if I will sleep tonight

 

(And since the state we are visiting is covered with cottons fields that we all seem to be allergic to)

 

I feel itchy, oh so itchy

It is witchy how itchy I am

A very itchy and bitchy ma’am

bitchy

See the grouchy girl in that mirror there,

Who can that crab apple be?

Such an achy body,

Such tired eyes,

Such a lazy gait

In another state I must be.

 

I feel sleepy, oh so sleepy

So sleepy and weepy, it’s not right

And it isn’t even close to night!

moving

(I actually did some research for my little song parody and it turns out, I don’t even have to change any words of Part 3 of the chorus for it to fit into my own little MS away from home song.)

 

It must be the heat,

Or some rare disease,

Or too much too eat,

Or maybe its fleas!

crazy woman

I feel icky, oh so icky

It is sickly how icky I feel

And so icky I can hardly believe it’s real!

 

Don’t worry friends, I just wrote this little ditty to do anything to get rid of this song.  If my version didn’t work, the effects of the shot are starting to let up, the MS MonSter (see my prior blog post MS/PMS MonSter Mash) is starting to head back into its cave, and the children have time on their dance card to hang tomorrow which will be a straight shot of adrenaline and joy.

I don’t know that after chasing and playing and hanging with them that I will be feeling pretty tomorrow either.  But I will definitely feel less icky.

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Dear friends,

Want to stay home and avoid Black Friday shopping?  

Want to give a gift that brings laughter to others this holiday season? 

Why not give MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis to family and friends? 

MS Madness! is a gift that will make them smile over and over!!!

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A Few of My Favorite Things

A multiple sclerosis Thanksgiving post

sound of music

I actually wrote this past on a previous Thanksgiving.  Yet, I’m still super thankful for all the same things!  So I thought I would share it with you once again.  Have a wonderful holiday friends….

For some insane reason, I can’t get the above song out of my head even though I have usually found it slightly annoying.   It’s kind of a Christmas song, although not written as such.

As someone who loves autumn so much so that she enjoys taking her cool weather holidays one at a time, I’m not sure why this song is hanging around my lesion filled brain.

Perhaps it’s because next week is Thanksgiving and the above reminds everyone what what’s her name from that movie is grateful for.   Thus, why isn’t My Favorite Things thought of as a Thanksgiving song?

I have so many things for which to be grateful, that I couldn’t possible name them all or fit them into a song.  And trust me, mittens and kittens are not at the top of the list.   Just thinking about Thanksgiving makes me grateful.

snoopy thanksgiving

For example, if my small family winds up at my place on the holiday then I am super grateful that the local grocery store sells what I like to call ‘turkey in a box; a complete holiday dinner you can just throw into the oven all prepared and no one is the wiser.

I am grateful for pumpkin pie- how could I have possibly left out pumpkin pie in my last post  Pumpkins, Pumpkins Everywhere?

I’m thankful that Thanksgiving is a day where it’s perfectly appropriate to eat too much and veg out.  It is actually un-American not to do so.

And I am thankful that even the fruits and veggies cooperate on this day and aren’t too obnoxious- think mashed potatoes, stuffing with celery, cranberry sauce, candied yams, pumpkin pie.  I know, again with the pumpkin overkill.

pumpkin pie

I am grateful for the knowledge that Black Friday is just a scam of hype and deals that aren’t really deals, thus allowing smug people like me the luxury to stay home, eat too many leftovers and veg out for one more day.

But this is a multiple sclerosis blog and so if I am going to list things that I am grateful for, or a few of my favorite things, I should focus on MS.

What could one possibly find to be grateful for about MS? I thought about my last few years living with this illness and did miraculously come up with things to be grateful for.

For example, while I am not thankful to have to give myself shots, I AM very thankful that they seem to be working.   And I am thankful for the extra fat cushion I have to soften the shot just a bit.

I still HATE doing them though.

'Only one side effect - colossal pain...'

I’m thankful to have a knowledgeable, kind, patient, young, handsome neurologist on my side as I battle MS.  I am NOT thankful that he happens to be married but I guess you can’t have everything.

I’m grateful that my primary doctor diagnosed my diagnosis quickly without having to do a spinal tap as I have heard they are just horrific.   She just had me electrocuted and shot through a tube a couple of times and we were good to go.

mri barbie

These bits of MS gratitude did not seem grateful enough.   I started looking over my blog posts for more help and realized that I started this blog over a year ago and it has since grown from a whenever I felt like it post, to a once a month post, to twice a month post and then to a once a week post.  (Thank you to multiple sclerosis for continuing to give me enough material to keep this wacky blog going- oh wait- maybe not….)

In my past blogs there were other examples of MS things I had to be thankful for.  In the post Stormy, Sleepy Sandy, I talk about my bladder alarm clock screaming at me to get up.  I am thankful that the alarm clock part of my bladder is still working.  It’s been quite a long while since I have had ‘an accident’ and I would like to keep it that way for as long as possible.

kalecartoon

I am thankful that kale is considered an awesome veggie for MS’er’s as well as the world as a whole, and I can sneak its precious nutrients into my all time favorite comfort food, kale soup- see post Kale, the New Frontier.

I am thankful that due to cognitive difficulties that come from MS, when I do something stupid I have a disease I can totally blame it on- Stupid MS.

While fatigue and clumsiness are constant companions, and I am may not move so gracefully going about my day- No Moves Like Jagger but Smooth Like Montel and Chop Their Happy Little Heads Off posts- I am grateful that I’m still moving.   Being able to move about without any help is definitely something to be grateful for, even if you do move like a slug most days.

And while an eye exam discovered a new disgusting condition, Oily Tears and All, I am grateful it didn’t show any significant damage as yet to my optic nerve.  I will be able to continue reading the numbers on my bedroom scale and the milligrams on my medications going up, up up a while longer…

montel

And speaking of weight and Montel Williams, I am grateful to all my friends, family  and readers who have helped me on this journey, whether they sent me cool tools and recipes to try to get fit- The Star Wars Way and 50 Shades of Green/Doing It Veggie Style posts, or whether they sent words of encouragement, or are just reading the blog after I have it to them a million times, even if it is just to shut me up about it, I am grateful.

And on this sappy holiday of Thanksgiving, I must say I am thankful to God who is the real being responsible for the above.  My health, my sense of humor or lack thereof depending on your opinion dear reader, my friends, my family and everything good comes from HIM.

Fortunately for me, HE also enjoys a good joke or two.   HE absolutely appreciates a rip roaring laugh.   I think that may be why he created us in the first place!

A Happy and Healthy Thanksgiving to all!

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