Tag Archives: ms madness! a giggle more cry less story of multiple sclerosis

Holiday Heart Madness

A post Valentine MS post

I’m not against Valentine’s Day.  Truly, I’m not. Let the sappy saps in love or in intense-like-flirting have their sappy day.

Plus, Valentine’s Day ushers in one of my favorite holidays, half off lots of chocolate candy day, which I totally celebrate.  Where was I on 2/15?  In the clearance candy aisle of my grocery store of course!

But this year, Valentine’s Day led to my speculating about dating, Steve Harvey and multiple sclerosis.

No, no, no!  Don’t panic!  Steve Harvey has not been diagnosed with MS, at least not to my knowledge. I certainly don’t want to start any celebrity medical rumors.

But on one of my blah days you might find me watching his daytime show.

(Crucial Disclaimer- I’m talking about a regular blah day as opposed to a Super Blah day where my brain is not in any condition to watch anything.  For the official, technical, medical distinction, please check out one of my former posts titled Super Blah.)

When I watch Steve Harvey I get concerned about my stubbornly single status.  My buddy Steve is all about helping women find the perfect man and turning regular men into perfect men.  His well intentioned goal is to pair us all up.  But I don’t want to be paired up!  Right now, I’m not searching for the perfect man.

(In truth, I’m not so eager to find a not-so-perfect man either.)

I try to heed all the warnings about not allowing MS to turn me into a social outcast but being social can be exhausting!   Add in love and sex and emotions and it’s enough to make me want to hide in my blanket fort with a good book and an even better bottle of wine.

Is that wrong?

I have some awesome writing friends who have MS, met at an MS event, fell madly in love and are now happily married.  And I’m super happy for them.  I don’t think it would be appropriate to name them, Jennifer and Dan Digmann, but I think their love story is amazing.  Exhausting, but amazing.

Personally, I can’t even imagine dating with MS.

“Hi Yvonne, would you like to join me for dinner and a movie?” a potential suitor might ask.

“Uggghhhh…. Can we skip the movie?  My bladder makes me miss most of it anyway.  And can we do lunch instead?  I’m usually a cognitive mess by 6.”

And what’s the latest rule on Going Dutch?

Me- “If we’re Going Dutch can we go to McDonalds?  MS keeps me on a tight budget.”

Potential Suitor- “Well, if we’re keeping it low key, how bout pizza?”

Me- “Uggghhhh, ok.  But be warned, with my MS shakes and my regular clumsiness combined with my MS clumsiness I’ll probably wind up wearing a slice or two.”

(Ok, so my blogs are tongue in cheek which means I may exaggerate slightly.  It’s unlikely I would actually wind up wearing a slice or two.  But I would definitely get sauce on me somewhere.  And cheese.  I just don’t leave a pizza joint without cheese on me in several places, chin, shirt, sleeve…..)

Perhaps you may think I think too much and that I’m totally exaggerating- of course I am, I just told you that.

And you may be right.

And it’s not like I’ve always been this way.  I’ve had some super fabulous relationships. And I’ve had some super not so fabulous breakups.  I’m just not sure I have the energy to go through that again.

I find comfort in the words of the great Katherine Hepburn.

“Sometimes I wonder if men and women really suit each other. Perhaps they should just live next door and visit now and then.”  Katherine Hepburn

But then again, Katherine still had a busy social life.

I do try to keep social with my friends as much as I can.   And I in no way begrudge those with MS who are searching for fun and for a mate. I’m just not one of them right now and I’m stressing myself wondering if that’s ok.

I don’t think Steve Harvey thinks it is.

Maybe, just maybe, if it’s meant to be, a great date will just magically appear and I’ll have a magically better willingness to appreciate it.   But is it so bad to be so consumed with so not searching for that great date?

What do my single MS friends think about that?

Note 1- I actually did have a Valentine.  This little cutie is a Valentine baby who turned six this year and who is my lovey dove all year long!  Happy Birthday DJG2!

Note 2- To learn more about Dan and Jennifer Digmann and their very cool love story check out their website here Dan and Jennifer Digmann

Note 3- I believe the best thing for me right now is to watch Steve on Family Feud instead of his talk show.  Families and feuds I definitely appreciate!

PS  March is National MS Awareness Month! Want to get some awareness tied in with some giggles too?  Celebrate the month by giving the gift of MS Madness! Available on Amazon and BarnesandNoble.com  A portion of the proceeds from the sale of each book is donated to non-profit agencies helping those with multiple sclerosis and other chronic illnesses.

PPS- Happy Black History Month!

PPPS-Happy President’s Day!

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H2O a Go Go

Multiple Sclerosis advice

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Yes friends, this is a repeat. But my brain has been a little slow lately.  And since this is one of my personal favorites, here you go….

You may think today’s blog is another one that has me whining about my obnoxious bladder.

Well, it’s not.

Although, to paraphrase my sister Laurie, “my bladder issues do still piss me off!”

When you tell people you have a chronic illness you find yourself on the receiving end of a ton of unsolicited advice. Most of that advice comes from well meaning people.  Because they are well meaning, the polite you grins and bears it even when it’s useless, clueless and ridiculous.

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“Just tell yourself, ‘I won’t get stressed, I won’t get stressed…’”

“Breathe…”

“You need to get more sleep.  Oh, you got nine and a half hours?  You must be sleeping too much…”

“You may not have MS, it could just be an allergy…”

The thing is, sometimes you may actually get something helpful out of the advice so it’s worth listening too.  (Yes, that advice could be construed as unsolicited advice directly from me.)

Imagine my shock when years after someone told me I should eat bee pollen, I discovered that bees are actually helpful and if we don’t take better care of them, they are going to go away and then the world could end.

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As someone who has written a book about multiple sclerosis that I am desperately trying to sell to the masses, (MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis in case you’ve missed it the 10, 000 times I have mentioned it before-more unsolicted advice-buy, buy, buy…) I am even more open to advice.  I travel my area talking about my book and people want to tell me things that they have heard might possibly be helpful.  And again, that is a great thing.  I appreciate it, I really do.

But every once in a while, not so much.

Please allow me to briefly digress. I swear there will be a point to this digression; I think.

I am very proud that after many people suggested that maybe I didn’t have MS but actually had aspartame poisoning, I looked into it and discovered that they were right.  Well, not really.

My excellent neurologist says I still have MS and I believe him.  But I looked up aspartame and discovered it really is bad for you and sure wasn’t helping things.  I switched from artificial sweetener to Truvia, an expensive alternate, and completely gave up my beloved fountain diet cokes in favor of water.

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I drink water all the time now.  Plain water; no enhanced sugary flavors.  I tried diet coke again once and didn’t even like it anymore.  I thought I was doing great.

At one speaking event I foolishly forgot to pick up some bottled water. A friend offered to get me some and came back with SmartWater which I hadn’t seen before but thought would be great as maybe it would help me be smart.

After the presentations by many authors, a woman to approached me.  She asked if she could tell me something and of course, I agreed, hoping she was going to tell me that my book looked amazing and she couldn’t wait to buy it.  Instead she informed me that the SmartWater I was drinking really wasn’t smart at all.  I was quick to appease.

“Oh really, I’ve never drunk it before.  My friend got it.  Is it filled with sugary additives or something?”

“Oh, I don’t know,” she said.

Hmmmm……

It was a chilly day in May and she was wearing socks with sandals.  I know it’s not right to stereotype but my first thought was the bottle; she must be Earthy Crunchy green and worried about the planet.

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“Oh, don’t worry, I recycle- I won’t throw away the bottle.”

That wasn’t a lie.  I really do recycle but turns out that isn’t enough anymore.  Don’t even get me started about the dangers of water bottles, that’s a whole other blog post.

“That’s not it either,” she replied.

Turns out, what she was referring too was the alkaline content in bottled water and how it does something really bad that could be making my MS worse or does something really good that could make my MS go away.  I couldn’t figure out which.  The only thing I know about alkaline has to do with batteries.

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Maybe I should ask the Energizer bunny what this woman was talking about.

Then she mentioned something about acid levels, which was really upsetting as I’ve never done acid in my life-not even in college.

Here I thought I was being so healthy!!!!   No diet coke for me!  No juice at this event-too much sugar.  No milk- now some say milk is bad.  No lemonade or even iced tea.  No beer or margaritas either.    No chemicals, poisons, GMO’s, alcohol or aspartame.  I was drinking what I thought I was supposed to be drinking, what everyone told me I was supposed to be drinking.ID-100207125

This woman then went on a 20 minute scientific diatribe while I stood there dumbly watching the custodian fold the chairs and empty the sods cups.    I couldn’t figure out science even before MS attacked my brain. I heard the word alkaline a lot and acidic.  And inflammation, that one was kind of familiar.  But I had absolutely no clue what she was talking about.

I’m all about good advice and being polite though so I stopped trying to figure her theory out and just figured when she was done, she would tell me what I should do stop the water epidemic.  She finally stopped talking and so I asked her what I should do? How do I solve this problem of bottled water that I didn’t know I had?

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I was eager for an answer and good advice that would circumvent me going back to school to take a science class.  I didn’t even know what kind of science this was.   Biology?  Chemistry?  Earth Science?  Yes, water lives on the earth so it must be an Earth Sciences class I should take to sort this out.

Her response to my question of what should I do now that I know bottled water can be bad, was straightforward.

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“Oh, I don’t know.”

What??  See friends, I swear this is all true; you can’t make this stuff up with or without an MS brain.

I pressed her a little and she told me that she had just moved to the area from California which had the best water in the world and where she knew which bottled water was safe to drink.  Now that she was in MA, she had no idea.

I pressed her more and she then told me her best advice was to buy litmus strips (what?) and then take them to all of the Whole Foods, Trader Joe’s and health food stores in my area where I should buy up all the bottled water they had and then bring it home to test each of them with the Litmus strips and then only drink the bottled water that tested well.

For one month.

Then, as companies can change their manufacturing processes and their water sources, I should repeat this test every month for infinity to make sure I was constantly getting the best water.ID-100307529

It was at this point that I began to peek around the corner of the empty room looking for the Candid Camera dude.  He never showed up.

I was more confused than ever.

About the only thing that seemed clear after the woman and I finally said goodbye was that there must have been something in her water.

There just had to be…ID-10036921

What is the craziest advice you have ever gotten?

 

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Shower Time

A new multiple sclerosis skill

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People not living with multiple sclerosis or another chronic illness can’t possibly understand the fatigue we talk about unless they have actually spent hours trying to find the energy to take a shower.

It doesn’t matter if my achy body slept in til 11 or I had to get up at 7 for Mass.  (What is up with 8:30 Mass?  My Christian friends might disagree with me but my reading of scriptures says that worship is not appropriate until the worshiper is wide awake, usually after 10:30.)

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The plan for this particular day included finishing (and actually starting too) a writing project I had known about and been thinking about for months.  It was due at midnight. Showering helps me think through ideas but getting into the shower has become a lot of work lately.

It shouldn’t be.  Especially on this day.  This was to be a quick shower. I wasn’t going anywhere besides my desk.  I didn’t need to wash, condition or style my hair.  I didn’t need makeup.  All I needed today was a quick rinse, soap, rinse again, and dry.  Easy.

I probably didn’t even need a shower except that for me, my secondary illness is germaphobia so going without is out of the question.

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I drank my tea.

I ate my breakfast.

I answered my emails.

I sorted through my daily meds.

I made my bed.

I posted a funny baby video to Facebook.

I watched a DIY video on how to make a cheap bed for my dog which was pretty silly since I don’t have a dog.

I thought about my writing project.

I thought about why taking a shower is so exhausting.

I started this blog.ID-100165569

What makes a shower so exhausting?  Is it the standing? The water temperature? The slip and fall concern?  Is it the multiple steps even if the multiple steps are so simple we should be able to do them without even thinking about them?

I really didn’t know but I had to figure it out.  I had things to do and they started after I finished my shower.

I thought that music might help through the getting clean process and so I turned on the Music Choice channel.  I normally go for classic rock but today the 80’s felt like better shower music.

The channel was playing Too Shy by Kajagoogoo.  The music notes said that the lead singer left the band to pursue a solo career in the 80’s.

“Well how did that work out for you Limahl?” I snickered.

Before I knew it, I was Googling Limahl.  Turns out his solo career went fine.  But he was definitely cuter in the 80’s.

me capturing the 80s

me capturing the 80’s

Then again, weren’t we all?

I  v— e—r— y  s—l—o—w—l—y headed to my bathroom.  It was shower time.  Since I had 80’s music on shower time turned into Hammer time which made me think of MC Hammer.  Thus, that was the song in my head when I finally got into the shower, over three hours after waking up initially.

Taking a shower should be automatic and NOT a big deal.  It is such a minor part of my day that I don’t even write it down on my “to do” list; and I write EVERYTHING down on my “to do” list.ID-10094176

Post a funny baby pic to Facebook– scratch that right off.  Done and done!

In the years before MS symptoms started rearing their ugly and obnoxious head, taking a shower was how I kick started my day, not something I had to work up too. But multiple sclerosis can change many things both huge and insignificant.

Still, I refuse to let MS completely beat me up. Whenever possible, I go for the positive.

Now dressed and back at my computer and finally starting my writing project a thought occurred to me.  Yes, it was ridiculous how long it took me to do such a routine task.  But look at all the things I accomplished in the meantime.

Those cute baby videos don’t post themselves you know!

Come to think of it, I was pretty impressed at the things I had done while I procrastinated the soap and water part of my day.ID-100127363Back in the old days I didn’t have such procrastination skills. Procrastinating meant zoning out in front of the tv while some sitcom I had seen hundreds of times broadcast canned laughter.  I would literally be a useless clump of procrastination nothingness.

Now look at me!  It takes quite the skill to be able to procrastinate at this level.  It is not for the weak or faint of heart.

Neither is MS.

I decided that this skill I’ve developed since my diagnosis is nothing to disregard.  I’ve entered into an elite society of professional procrastinators and I couldn’t be prouder.

I don’t want to pat myself on the back too much but MC Hammer’s words lingered in my brain.

Hey you regular, amateur procrastinators- “You Can’t Touch This!”ID-10056127

March is MS Awareness Month and we only have a couple of weeks left!  If you like your awareness brought to you with a giggle then please check out my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.  You will definitely giggle.  It says you in the title!

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Scary Brain, Scary Movie

Multiple Sclerosis meets HALLOWEEN

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I didn’t mean to break my promise a couple of weeks ago; the promise where I swore I would post a new blog soon.  Technically I haven’t broken anything.  My definition of soon can be very different from your definition of soon.  

But I am working on it and hope to have a new blog out, well, soon.  In the meantime, with Halloween right around the corner, I thought I would repost one of my oldest and most popular blogs.  

Get your dvds and some popcorn- we’re going to the movies!

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It is the afternoon and I am shuffling around my house, trying to focus.

I have my lists; all the MS helpful tip books suggest lists.

There is the to-do-this-week list.

There is the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.

There is, of course, the things-I-should-try-not-to-forget list.

But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.ID-100236758

So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo. But then I see my computer and try to remember if I responded to that important email I received this morning.

Yes, I see now that I did but there are some more emails to read. I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead.

What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.ID-100237073

My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water.

I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again. And three plates and five minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom. How on earth am I supposed to drink eight more glasses today?

I might as well move into my bathroom.

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.ID-100362053Figures. Leave it to me to equate my multiple sclerosis to a horror movie.

But is The Fog the right horror movie? I am wandering around lost in my own little world and not feeling quite right- almost zombie like.

Yes, zombies.  Zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it’s not The Fog but Night of the Living Dead.

Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.ID-10096210

Or is it? Sometimes I just want to scream. Actually, I just want to scream a lot. Maybe my MS really is Scream? I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?

It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”

I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the disease. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.ID-100225595I remember the all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”

My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants.

Yes, Psycho is the movie. That is the one that most describes my MS. And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging.

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Yes, Psycho feels right.

Bathroom again, but I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling? And that one, the sudden sharp, jab in my left arm? And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise? And here are those weird ear noises again- has my body been taken over by aliens?

That’s it! Invasion of the Body Snatchers!ID-100126087

That is definitely the horror movie that best describes my MS. It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun. Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your MS was a horror movie which horror movie would it be???????scarymoviecollage

Want to know something scary???  

MS Madness! A “Giggle More, Cry Less”Story of Multiple Sclerosis was named Indie Authors Library’s most popular book of September!  

Thank you to all my readers and Facebook friends who voted.  If you haven’t had a chance to check it out yet, give it a read.  

Giggles are guaranteed!

Happy Halloween from Myron, the myelin munching monster!
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On the Radio

Multiple Sclerosis hits the airwaves!

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Hi friends-

Sorry I’ve been quieter than normal.  It’s not for a lack of ideas as MS keeps making me crazy!  It’s more because of the “not enough hours in the MS day” whine. But I promise a new blog in the near future.

In the meantime, I’m on the radio!  I bet you saw the title of this post and thought of Donna Summers 80’s hit.  But no, it’s me, on the radio.

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Thank you to The Authors Show which has interviewed me and is posting the interview today only, 10/5 only, until midnight.  I chat with the host, Linda Thompson for about 15 mins and you can access it at any time by clicking this link-                                         The Authors Show

The interview talks about MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis, MS and how humor helps me.

My very best to all of you my friends!

Yvonne

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Why I’m Voting for Snow Miser

Multiple Sclerosis and the politics of temperatureID-10012725

Last winter was a snowy, icy, super cold one.  People complained all over Facebook and threatened to pummel anyone who complained about the heat in the summer.

I, for one, never once complained about the winter and insisted I had reserved my right to grumble about the July/August heat all I wanted.  But I’ve been good and stayed away from voicing my weather preferences.

But it’s been hard, especially when people, probably the same ones who complained during the winter, try to compare their discomfort in the heat with mine.  Trust me folks, It’s not the same.

Your misery is extreme discomfort.  My misery is misery.

Here’s a common dialogue-

Person, “how’ve you been?

Me, “ok.  Had a difficult time during the heat wave last week but am better now.”

Person, “Everyone had a difficult time during the heat wave.”

Really?

Let’s compare shall we?ID-100136480We’ll start with a point of reference.

Multiple sclerosis makes all extreme temperatures a problem.  I wrote about my difficulty with the cold and losing power after a blizzard a few winters ago.  The post was titled Could Be Minutes, Could Be Days and in it, my biggest lament was not being able to have my treasured hot tea to help me through.  A fierce winter storm attacked and hot tea was the main thing I was whining about.

True, I can’t fall asleep if the temperature in my bedroom is below 73 degrees and if I don’t have hot water I go unclean until I do; cold water in a shower feels to me like being stabbed with hundreds of sharp needles.  I get enough of needles taking my meds thank you very much.

And perhaps I’m lucky that I work from home; if you can call these weekly scribbling and promoting my book, work.  (Subliminal message- MS Madness!  buy, buy, buy.)

If I happen to venture out after a storm I do have to watch my footing on icy sidewalks, sidewalks that I am lucky to have shoveled by other people.

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I’m Mister White Christmas

I’m Mister Snow

I’m Mister Icicle

I’m Mister 10 below

Friends call me Snow Miser

Whatever I touch

Turns to snow in my clutch

I’m too much

From Snow Miser, in “The Year Without a Santa Claus”

So to recap- with the cold I have trouble falling asleep, can’t shower with cold water, have to be careful outside and if I don’t have power, can’t have my daily hot treat.

Now let’s look at the problems with the heat.

When the heat ramps up, everything MS wise ramps up too.

The fatigue becomes beyond belief, beyond able to manage because if I’m overheated I’m not sleeping at all.

The cognitive issues become unbearable.  I can hardly think at all.

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My lack of balance issues and loss of coordination issues greatly increase.  Everywhere I move, inside, outside, up stairs, down stairs I’m likely to fall.

I have trouble breathing and often feel like I might pass out.

What usually feels like 5 lb weights added to each leg whenever I move suddenly becomes 25 lb weights.  Thus, what are usually mild aches become downright pain.

My bladder becomes even more obnoxious than usual whether or not I’m hydrating properly.  I tried extra hydration and less hydration during the last heat wave and neither helped the bladder issues.  In addition to having to go more than ever I also covered myself with bruises from walking into the walls in my rush to get where my bladder needed me to go.

So, with extreme cold comes trouble falling asleep, no showers, no tea, trouble walking outside.

With extreme heat come no sleep, trouble walking everywhere, no thinking, trouble breathing, pain, bruises, and lots more increased bladder ridiculousness.

Maybe it’s just me, but I kind of like breathing.  And thinking isn’t too bad either.

All of the above that comes from the heat occurs even in the A/C.  The A/C helps but doesn’t solve the heat problem.ID-100171914

Funny, but the A/C does helps with the cognitive trouble as while I’m miserable the one thing I’m clearly able to think about is my cash flying out the window towards the electric company with every troubled breath I take near the unit.

For people with chronic illness there are heat remedies.

There is a cooling vest I can use.  Problem is, it is wicked uncomfortable and heavy in the house and if I wear it outside I could get shot as I look like a suicide bomber.Picture 27

I had a cooling tie once but that just cooled my neck while the rest of me overheated and then I had no equilibrium whatsoever and was even more confused.

I do have a cooling cloth that may actual work.  The problem with that?  During the heat wave I didn’t remember that I had it!   I only remembered it just now as I’m typing.

(Don’t worry.  I took a break from writing, dug into my closet, found it and will hopefully know what it is when the next heat wave hits.)

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I’m Mister green Christmas

I’m Mister Sun

I’m Mister heat blister

I’m Mr. 101

…..

They call me Heat Miser

Whatever I touch

Starts to melt in my clutch

I’m too much

From Heat Miser in “The Year Without a Santa Claus”

Seriously, which would you prefer?

A white Christmas or a green one?

An icicle or a heat blister?

Something important melting and disappearing all together or turning into a ball of snow? A ball that you can maybe use to defend yourself if necessary or eat if you are hungry.  They don’t make delicious snow cones for nothing friends!

I live in a free country and I can prefer the cold of winter over the heat of summer if I want to.  I can even talk about the differences of each on Facebook if I want. Yet, too often people are inclined to minimize my input, challenge me or outright argue.ID-100206611If you ask and I tell you about my problems with the heat, please don’t tell me you can relate; not unless the heat makes you physically unhealthy.

And please don’t judge me if I prefer the negatives that come with Snow Miser over the negatives that come with Heat Miser.

Snow Miser just works best for me and that’s all there is too it, winter, summer, spring or fall.  But you can prefer Heat Miser if you’d like, even if I don’t quite get why you do.

Here’s the thing.  Nobody’s perfect and I don’t think for a second that Snow Miser has the answer to all my temperature troubles.   He alone, cannot save me from ongoing woes.  Heat Miser’s not without his own charms but me, I prefer the other guy.

Speaking of Snow Miser and Heat Miser, is it my overheated imagination or does Heat Miser’s crazy hair remind you of a certain Presidential candidate?

donald-trump-hair

This blog post is dedicated to all the people in the United States that are so hot all the time that they even appear red on a map!

Snow Miser lyrics are from FM Static

Snow Miser image from en.wikipedia.org-Snowmiser74shawn.jpg

Heat Miser lyrics are from Thousand Foot Krutch

Heat Miser image from watchmovies90s.com

Donald Trump image from politicalhumor.about.com

MS Child’s Play

Multiple Sclerosis no concentration

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I love games; always have and pretty sure I always will.  And no, I don’t mean people mind games, the stuff of drama and social network craziness.  I mean good old fashioned board games.

When I was 5 I was playing Candy Land with my grandmother.  Since she didn’t speak English I figured she would be clueless if I cheated.  Of course she would believe that when I picked a card with two blue squares it suddenly meant that you could jump six blue squares.  She caught me and I got a reprimand.  She spoiled me so it wasn’t too serious but I never cheated again and continued to play.

As an adult I bought my friend’s 9 year daughter the game, Barbie’s Dream Date. I would never buy a girl such a game now but I was poor and stupid then. Anyway, the idea behind the game was that Barbie had to get all these things before she could go to the prom- shoes, a dress, a limo, a date.  I was playing the game with the girl and her little brother and I was losing badly.  Halfway through the child shouted, “Yvonne, you still don’t have a boyfriend!!”

Potential boyfriend?

Potential boyfriend?

Story of my life kid, story of my life.

The point being, that I still think games are a fun way to spend some time.  But trust me; it doesn’t matter if you’re 5 or 50; if you are playing with me I’m going all in.

Turns out I’m pretty competitive and whether I’m having a wine filled game night with my friends or I’ve got a vicious game of Chutes and Ladders going with my nephews, expect no mercy.  I don’t care how cute you are.

My game closet

My game closet

This weekend however, my competitive gaming fell to a new level of embarrassment when multiple sclerosis got involved.

My cousin Kelly and her three kids came to visit.  There was Ashley, a teenager, Noah 6 and Lucy, 7 and three quarters as she proudly told me.  When Lucy came to visit last summer she offered some great MS perspectives that I wrote about in the blog, Out of the Mouth of Lucy.

On this visit we spent the first part of day one at the bay beach and after showers and some iced tea I promised to play a game with them.  The choices were Go Fish and Memory which used to be called Concentration when I was a kid.

Why do the powers that be insist on monkeying with perfection?

My preference was Memory.  I could have played the adult/host card to get my way but neither game actually had that card.

So I played the MS card which yes, believe it or not, works with kids.  I told them that my doctor wanted me to play games to help improve my memory and that argument got me the game of my choice.  Not before Lucy had a ton of questions about my doctor, my medicine, my treatment and other things but still, Memory was on!ID-100297281

This is the game where cards are turned over and you have to turn them two at a time to try to make a match.  Noah and I tied for the win with 9 pairs each.  Lucy didn’t do too badly with 8 pairs of her own but I won!

Even if I had to share that win with the adorable Noah.

The first beach and the game must have taken away some of my brain skills as later we drove to an ocean beach where they were desperate to see seals and I was desperate to show them some.  Standing on the ocean bluff I saw a grouping of birds.

They asked if the birds were seals.

“No,” I told them, “those are birds.  I’m a Cape Cod girl and I see seals all the time so I would know.”

Since everyone around us was pointing and smiling at the group Kelly wasn’t so sure.  She took the kids down to the beach where they saw, and from my perch I finally recognized, what was actually a large pod of seals.

The dots are seals

The dots are seals

What was wrong with my brain??  How fried could it get from one day at the beach?  So fried that I can no longer tell the difference between birds and seals?

This was an incredibly embarrassing faux pas that I eagerly blamed on MS.

Day two of their visit involved walking, whale watching and visiting other family and not only was I wiped out, but my company was too.  Back at my house after the long day, I emerged from the bathroom after brushing my teeth to find everyone was fast asleep.  Even Ashley, the teenager who usually stayed up until all kinds of crazy hours was completely passed out on the sofa.

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That means that either they were beyond spent or I take a really, really long time in the bathroom.

My cousins left the next morning but not before we had to play Memory one more time.  And that game was an epic fail.

I couldn’t remember where anything was at all, even the cards closest to me.

fox

If that wasn’t bad enough, everything looked the same- the fox looked like the cat, the duck looked like the dog, the lion looked like the rhinoceros.

And it wasn’t just the animal pairs that were messing me up.  The apple looked like a heart and the kite looked like the leaf.

I couldn’t even remember the card that I kept accidentally turning over as it kept sticking to my knee.leafkite

I was such a sorry competitor that the kids felt bad for me.  They kept trying to give me their pairs but I refused!

I didn’t need their cute sympathy.  I was going to make a comeback.  MS or no MS my brain was going to pull through. I would rally and sweep this game!

In the end, Lucy won with Noah a close second.  I had one pair, coincidentally the birthday cake pair, a favorite of mine.

And I think I only had that as the kids might have purposely isolated them so I would turn them over.  Either because they felt bad about my pathetic showing or to see if I really would eat the birthday cake pair as I promised if it was one of the pairs I got.

(I did nibble on it to test its sweetness but I was too overwhelmed with shame to feel like I deserved a cake, even if it was just a cake on a card.)

cake

The only thing that made me feel better was the fact that this too must be the fault of multiple sclerosis.  The more tired I got from a weekend of hanging out with awesome family and doing fun things, the more the cognitive parts of my brain were going to make me pay for it.

In my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis, I talk about how instead of the involved neuropsychological tests doctors make MS patients take to determine their cognitive abilities, they should just make patients play FreeCell instead.  I argue that would be an easier way to determine how a patient’s brain is doing.

I would like to amend that now.  Instead of FreeCell, the best way to see how a patient’s brain is doing is by getting them to play Memory with some kids.  Memory is definitely the way to go.

And while I’m furious that MS ruined my Memory playing skills that morning, it was still fun. It would have been more fun if I won but what can you do?

MS is no fun.

Losing at the Memory game is no fun.

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Having a fun time with fun people is fun.

Just make sure you get lots of rest as soon as possible.

The next time Noah and Lucy come to visit I will be well rested and it will be Memory war.

And, unlike MS, I take no prisoners!!

My blogs are always tongue in cheek my friends and I had a blast with all four of my cousins.  I may not be able to always keep up with the energy of young Noah but I’m sure going to enjoy trying!

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2 Images courtesy of my cousin Kelly

The other images are courtesy of my game closet

Lies, Lies, Lies, Yeah-Re-release

A now old, but new MS symptom

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So my computer is back and I’m getting caught up.  And I’m finally rested and refreshed after a fun, paid weekend away in the windy city.  More on that later in the month as I can’t go to Chicago without coming up with at least one blog about it!  

But this week, as I try to get my act back together, I offer a previously published blog. But don’t worry- it’s one of my favorites and includes a picture of a baby so funny looking that she is actually cute.  And don’t fret, I’m not making fun of someone’s baby.  The baby is me.

By the way, I want to tell you about a slight change with my future posts.  The blog powers that be tell me that Thursdays are a better time to post.  And my writing group is back to meeting on Friday mornings. So, starting next week, my posts will be up by Thursdays at noon.

Thank you friends- you guys rock!

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Lies, Lies, Lies, Yeah-7/12/13

No friends, this is not a blog about lame 80’s music.  And I am sorry if that song is now stuck in your head.  Actually, that is a lie.  Misery loves company and since it is stuck in my head, it might as well be stuck in yours too.

This is a blog describing how multiple sclerosis has turned me into a liar.  Just when I thought MS symptoms couldn’t get any stranger, I started lying all over the place.

Often the more you talk, the more likely it is you might lie whether you mean to or not.  And unfortunately for me, I am an extreme talker.  This is not necessarily an MS symptom.  I was just born this way.

As a baby, my parents actually took me to a pediatrician as I NEVER cried and they thought that was weird.  When I would wake in the morning, instead of crying for attention, I would talk away.

baby pic0001“Bah blah, goo goo bah bah, mme bbee bee nah, fro bah bah bah, goo mim ma me nah nah bah.”

This basically translated to, “hello, big people, I’m up and starving.  Can I have fruit loops like my sisters instead of a boring bottle?  Oh, and you won’t believe what’s in this diaper!  Big people, hello?  Where are you?”

As I aged, the nonstop talking continued.  Even so, I tried to be an honest person.  There was an occasional little fib here and there to spare hurt feelings.  But usually I was smart enough to spare feelings in a way without lying.

“It’s not that that skirt looks bad exactly.  It’s just that I think you can find something far more flattering than a size 2 on your lovely and voluptuous size 12 frame.”

But the older I got, (and now I know as I aged MS was starting to creep around my brain), keeping an ‘honesty is the best policy’ mindset became harder to maintain.  Coincidence?  I think not.

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If someone told me something was a secret, you couldn’t waterboard it out of me no matter how hard you tried.  But if you didn’t specifically use the word “secret,” I was an open book.  My filter was gone and I lost the ability to think through what to say when, while I was talking nonstop.

This mostly involved covering up other people’s little fibs.

Person A “I told Person B such and such so as not to hurt her feelings.”

Person B “did you know that Person A thinks I am fantastic?  What did he tell you about how fantastic I am?”

Or there was this example.  Person A would tell me something.  I would tell Person B.  Person A would flip out that Person B knew what I knew and would ask me did I tell Person B?

“Ahhh, I don’t think so, I’m not sure.”

Or Person A would tell me something and then Person B would ask me what Person A said.  I would get confused- should I sugarcoat Person A’s words?  How do I do that?ID-10093619It became really traumatic and so I would end up saying, “Person A- Oh no, they didn’t tell me anything.  Who is person A again?”

Allow me to state again that MS has destroyed any filter I may have.  Don’t tell me anything you don’t want me to repeat.  Trying to remember what not to say when just adds more stress to my already stressful day.  Cognitive difficulties lead to my needing to lie.  I don’t know anything.

The lying increased with the “how are you questions.”  If I answered truthfully, perfectly healthy people would respond, “I know what you mean, I get that all the time.”

Or, with something like, “I know you say you don’t feel well, but you look great,” which pretty much says to me that they think I am lying anyway and then I was even more confused.

I started just answering “I’m hanging in” which must be a total lie as I don’t even know what that means.

Then there are the other little lies I have noticed MS making.

The drug company, “are you ready for a refill of your injections?”

“Oh yes please, I can’t wait.”

Your friend, “that won’t be too much for you, will it?”

“Of course not.” Lies, lies, lies, yeah….

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Your doctor, “are you maintaining a healthy diet?”

“Absolutely.”  Not exactly a lie if you put a tomato on your double cheeseburger.

The cool, casual acquaintance, “you look beat- you must have had an exciting night.”

“I did!  It was a blast!”

And by exciting I mean I didn’t fall asleep until the very last commercial of the show I was watching.  To me, that is exciting.

Little by little I was telling more and more lies and I only recently discovered this fact.ID-100162874

It has been a hot, humid, crazy, stressful month and I didn’t have any ideas for a new blog.  I decided I would just post an old blog for this week.

And then I remembered that last week I had promised my readers a brand new blog.  Reposting something old meant that I was lying to my beloved readers.

The very idea caused me to stress.  I analyzed lying as a whole.  I became increasingly fatigued.  I couldn’t stop thinking about lying.

The lame Thompson Twins song (there were three of them by the way- twins was a total lie) came into my head.  I started writing to try to get it out.  And before I knew it, I had a new blog.  So there you go.

Sometimes multiple sclerosis has a way of working itself out.

Of course that is a total lie but what would this blog post be without one or two?

PS- Want to read a funny, inspiring book that will make you giggle and giggle over and over again?  If so, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis delivers!  That’s no lie- the reviews prove it!!

Happy Fourth of July dear friends!!!

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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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So Much for Life Lines

A multiple sclerosis epic fail

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That’s it MS– you’ve gone too far!!!  I know I’ve said this before but this time I mean it.  You have not only let me down but you have failed someone close to me who needed my help and I will never forgive you!

When you live with an invisible illness it is often hard to explain to people what is wrong with you, especially when you mention cognitive difficulties.  What is that?  How is that different from just being a space shot?  Isn’t it really all in your head?

Cognitive difficulties are hard to explain, especially since you are usually having cognitive difficulties right when you need to explain them.

Just this week I was asked to give a talk about my book, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis to a women’s professional organization.  The talk included a free dinner so of course I was excited.

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I had been given the date, time and location several months prior.  I put the info on my calendar. I put the info on my website. I confirmed the date, time and location several times with the member who invited me. The day of, I decided to confirm the time and location once again.  Cocktail hour was at 5:30; I definitely didn’t want to miss that.

So imagine my confusion when I pulled into the restaurant at 5:35 only to find one car in the parking lot and a big sign that said the restaurant was closed.

How could this be?  Where were the people who invited me?  I called a friend who quickly gave me the name of the place I was supposed to be at, the restaurant where the event had always been scheduled.  Yet each time I looked at the notice, I saw the name of a totally different restaurant.

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The bigger perplexity of all this is the actual restaurant was one I like better then where I thought the talk was going to be.  And the name of it?  The Bookstore restaurant!

You would think since I was talking about my book a restaurant named The Bookstore would have stood out.  Luckily it wasn’t too far away from where I thought I was supposed to be and so I arrived only a tad bit late.

It was a lot of fun.  And this MS cognitive mishap helped give me a humorous opener to my talk titled, Laughing through the Pain.  But the frustrating part was that I checked, rechecked, double checked, triple checked and checked again the location of the event.  Thank goodness my friend was home or I never would have made it.  Of course, I didn’t think to bring the contact info of the member who had asked me to speak. And in case you’re wondering, the dinner was yummy AND I ate the veggies that came with it.

The bottom line is that I’m used to my MS brain doing this kind of annoying thing and the only thing that surprises me is that it keeps surprising me.  But sometimes, this blackout of information is not funny at all.

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My mom needed my help and due to multiple sclerosis, I couldn’t provide it.  I like helping people and I believe it’s important to help others whenever you can.  I like to think of myself as responsible, the one you can turn to in your time of need, especially if your need happens to be in my particular area of expertise.

But my mom, who has been my rock on this journey, called out to me in a crucial time and I was beyond useless to her. My guilt, shame, heartbreak and fury remains.

What did she need that multiple sclerosis refused to provide?

A ride to an appointment I couldn’t give her due to fatigue?

No.

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Help hanging new curtains that my balance would not allow?

No.

Help running errands when I haven’t run in years- MS or no MS?

No.

What my mom needed when she called in desperation was the prize winning answer to a Rolling Stones trivia question just asked on the radio. AND I DIDN’T KNOW IT!

How could that be???  You’re probably thinking, “oh, that’s all.  That’s no big deal.  Yvonne is exaggerating again.  Unless the prize was a thousand dollars.”

But you are wrong!  This was huge!  I don’t even know what the prize was, likely a t-shirt or something.

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The problem is that my mom should have no question that I am her go to person when it comes to the Rolling Stones.

(Frankly, I was pleasantly surprised when she told me she was listening to a radio station that would ask a Stones trivia question until she told me that it was an oldies station!  When did the Stones become oldies?!!!)

I have always prided myself on my classic rock knowledge, especially when it comes to my favorite group.  Back when Who Wants to be a Millionaire had phone lifelines I made sure all my friends and family had memorized my number specifically so I could be their classic rock life line should they happen to find themselves on the show.

Just this week I was watching Millionaire and there was a Neil Young question that, of course, I got right.

What was even more upsetting was the fact that the question my mom asked was very similar to a question a radio station asked me at a concert this summer.  And the answer was the same!  Shouldn’t that have stayed in my memory bank?

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My mom’s trivia question was what was the Rolling Stones first hit?

I tried to cheer myself up with the knowledge that it was a vague question.  What constitutes a hit- top 20?  Top 10? #1?  And does the word “hit” mean in the UK or the US or both?

I could make all the excuses I wanted but the answer was It’s All Over Now and I should have known it.

The scary fact is that if I can’t be helpful to my family and friends when they need me, then what?

If I can’t remember crucial information like Rolling Stones trivia then what will I forget next?

Driving to the wrong restaurant is easy.

I can certainly deal with forgetting how to spell my own name- it’s kind of a tricky one.

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And I’ve long moved on from the time I forgot how to take a shower while I was taking a shower.  Cleanliness is overrated.

But forgetting Rolling Stones trivia? That’s just unforgiveable MS!

But what can I do?   I can only rest, take my meds, play brain games and spend hours with my Stones cds in an attempt to keep this trauma from occurring again.

And I guess I better go buy my mom a t-shirt…

Thank you to the Business and Professional Women’s Association of Lower Cape Cod.  I had a great time!

Once I found you….

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