Category Archives: MS Attitudes

The Yucky State Grinch

A multiple sclerosis book review, sort of….

 

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.

 

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.

 

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.

 

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.

 

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

 

 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.

 

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?

 

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.

 

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

 

 

 

Feeling a Little Icky, All Over Again

An MS inspired parody

 

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.

duhhh0001

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)

 

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

 

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!

 

(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!

 

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.

cover-half

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!!!

 

 

An MS Doodle Dandy

Multiple Sclerosis patriotism

 

With the exception of my late teen/early 20’s years, I have never been much of a rebel.  I grew up with this intense need to please and so when someone tells me to do something, I do it.

I floss daily.

I get my car’s oil changed every 3500 miles.

I pay my taxes BEFORE April 15th.

I wait ten hours after eating before swimming.

About the only rebellious thing I do these days is consume raw cookie dough against the advice of both the raw dough packages and that of my older sister.   But I try to do that in the privacy of my own home so as not to offend anyone and I do feel bad about it, kind of.

This sense of doing the right thing carries over into being a good citizen, even when MS makes me feel wiped out and yucky.

I suppose if I was really a great citizen I would have skipped my brief rebel years and joined the military.  The only problem with that was the fact that I am total wimp and wouldn’t have lasted one day in boot camp.  So hats off and deep, deep gratitude to those brave folks who defend our country!

The least I can do to be a good citizen is to vote.  I understand how government works; I watched Schoolhouse Rock when I was kid.

 

(I’m still totally furious that Conjunction Junction beat out I’m Just a Bill for the number 1 spot in a recent special featuring all the episodes.  I demand to know who voted for that!)

So on primary day I put on my goody two shoes and headed off to the polls.  It didn’t matter that not many people bother to vote in the primaries.  I was going to because it’s a privilege and it’s my patriotic responsibility to honor that privilege.

I even did research on who to vote for.  And by research I mean I asked my very smart friends who have ideals similar to mine who they were voting for and then I voted for that person too.

 

(And I did watch a commercial or two- I try to take this voting thing seriously.)

Luckily, my town is small and since it was only a primary the polls weren’t too packed and I didn’t have to stand too long to cast my ballot. But my civic duty was not done for the week.  The next day I had jury duty.

Honestly, I wouldn’t mind serving on a jury. I actually think it would be interesting.  I just can’t imagine any lawyer would trust me on a jury with all of my cognitive issues and my extreme fatigue.   But being the good citizen that I am, I would let the court make that decision.  I was happy and honored to do what my government asked of me.

 

The problem was, this was a lousy week to have to serve.  I had a lot going on and precious few non exhausted hours to do them in.  Of course, I didn’t know this would be the case when I got my notice, the notice that gives you the option of postponing jury duty.  Being on the road by 7:15 the morning of, standing in long lines to be processed, and waiting long hours in a hot stuffy courthouse was just not conducive to my life and my MS that week.

But it was what it was and I would just have to do my best.  I took comfort in the fact that I had one of those ‘call the day before’ notices.  Every time in the past when I received one of those, I never had to actually go in.  I would call the automated line the day before and an automated voice would tell me I was excused.  That’s what would happen with this jury service, it just had to.

When people who don’t have MS say they don’t understand ‘brain fog’ or ‘cognitive difficulties’ you are usually too fogged to explain it to them.  So allow me to do it for you.  The following is what brain fog looks like:

At 4PM on the day before my service I called the courthouse.  The instructions were clear- do not call even one minute before 4.  To be on the safe side, I waited until 4:02.

The automated voice thanked me for being a good citizen and calling.  Then it informed me that all jurors with groups numbered 0- 58 had to report.  I had been assigned group number 0060.  I had to go.

I was distressed.  I absolutely could not believe it.  How on Earth would I get through this crazy week with jury duty smack dab in the middle of it?

 

I thought perhaps I made a mistake.  I called again.  And again, was thanked for my service and told that all jurors in group numbers 0-58 had to report.  I was resigned to my patriotic fate.  I would just have to suck it up.

I postponed that evening’s shot so I wouldn’t face the horribly achy side effects during jury duty.

I went to bed super early.

I set two alarms to get up on time.

I stopped on the way to get some much needed caffeine.

And I stood with my burning legs in the long check in line, chatting with other potential jurors.

When it was my turn to hand in my summons, the court officer pointed out that I hadn’t needed to report at all.   WHAT??

Didn’t I call the automated number, he asked?

“I did.  It said all jurors with group numbers 0-58 had to report.  So at number 60 that means me, right?”

The frustrating thing about ‘cog fog’ is that once your brain makes a mistake, even a simple counting mistake, your brain then accepts that mistake as correct.  So even though I have known how to count since first grade and I called TWICE, I still screwed up.

I’m such a dedicated citizen that I showed up for jury duty when I didn’t even need to.

 

The court officer told me that my service was completed and kindly sent me on my way, probably noting my name and number for next time to tell the judge “this chick is way too dumb to serve, she can’t even count to 60.”

The good news was that I got back the badly needed day in the middle of the week.

The bad news was that I was so frustrated by my mistake that I wasted a lot of that day stressing over it.

Before I knew it the night passed, and when I turned on Facebook the next morning I was reminded of the date.

It was 9/11, a date no American will ever forget.

The date got me emotional.

It got me sad.

And then, it got me proud.  I started thinking about the amazing country I am lucky to live in.

 

I started humming Yankee Doodle Dandy.

Here’s another way brain fog works, your mind starts wandering down seemingly insignificant paths for seemingly no apparent reason.

I looked up Yankee Doodle Dandy.

Did you know that doodle was actually an insult?  The phrase Doodle Dandy was meant to insult the earliest American patriots, doodle meaning dumb.  But they chose to adopt the phrase instead.

And so it was with me-MS dumb or not, I’m happy to be an MS Doodle Dandy; an MS Doodle Dandy who’s ready for jury duty whether she’s wanted or not.

PS  If you are humming Yankee Doodle right now than you are a true patriot for sure!

 

 

Here Comes Gina Romani!

An MS Positive?   Possibly.

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

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

But what about something positive?

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

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

Really carded!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sigh………

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

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

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

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

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

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

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

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

Leave it to multiple sclerosis.

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

Or maybe the liquor store clerk just needs thicker glasses.

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

cover-half

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

Goodreads Giveaway

Beating Up the Bully, Anew

An MS blog redo, a Mad contest, and our boy Jack

Today’s blog-

Bullying is bad, very bad. Violence is bad too. Never, ever be violent. It is mean, the man upstairs doesn’t like it and legal fees are expensive.

I was never a bully when I was younger. Fortunately, I was never bullied either. I was simply a go with the flow type of kid. Funny then, how as an adult, I so enjoy beating up on a bully even though I am basically nonviolent.

 

In my twenties, I took my nephew to a zoo with an awesome play structure. He was five. The structure had a Tarzan-like swing where kids reached up to grab a bar and then could zip-line from one side to the other. I noticed that Drew had been at the head of the line for a while, with a bunch of little kids behind him. The line was not moving.

I went over to investigate and saw that while my nephew and the other kids waited patiently, a taller, older girl, probably at the cruel age of nine, was grabbing the bar first and swinging in a taunting manner. I watched her do this several times.

 

Finally, using my adult height to the utmost advantage, I leaned over her and grabbed the bar just as she went to reach it. It was all she could do to steady herself and keep from falling.

I glared the meanest bully look I could come up with and said, “it is HIS turn now,” and handed the bar to Drew.

She looked at me terrified and ran away. I let Drew take a few turns and then I passed the bar to the next short kid in line.

 

One might say that I shouldn’t be picking on someone younger than me and/or that I missed an excellent teaching opportunity to show the brat, oops, I mean sweet little girl, a wonderful, life altering lesson. But I must admit, I still get a sadistic moment of glee when I think about it.

Does that make me bad?

What does this have to do with multiple sclerosis? Well, I see MS as the ultimate bully.

The meanest playground stalking, slang calling, tear inducing, skinned knee causing bully around. And that sadistic moment of glee encompasses me again when I feel like I am beating up on it.

 

Since violence is wrong, (and really, who would I be violent towards?) my bully beating weapon of choice is a giggle stick.

Soon after my diagnosis I decided that whenever possible, I would laugh when MS was trying to make me cry. It isn’t always possible of course. Sometimes the meanest bully actually bites.

But when I can taunt MS by making fun of it, it is sadism of the righteous kind.

 

Unfortunately, MS has given me way too much material to work with. I have a lot of giggle stick beating to do. So much so, that I wrote a soon to be released book just to beat up on MS some more.

It is called MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis.

 

Today’s contest-

To help all of you get as excited as I am about the book-ok, that may be a stretch as I am really, really excited- I will be featuring a contest each month until the MS Madness February release date.

Here are November’s contest details-

 

1. The contest will run from today, 11/15/13 to midnight on 11/28/13.

2. The winner will be announced in the 11/29/13 blog which will also include excerpts from Chapter 19 of MS Madness which is titled Hey MS, Hug This!

3. The first correct answer to the contest question will win a free autographed copy of the book along with a $10 Amazon gift card to use to buy more copies of my book. (Ok kidding. The winner will still get the Amazon gift card but I don’t think that I can legally insist that you use it to buy more copies of my book. I can only strongly suggest what an excellent use of the gift card that would be!)

4. If more than one person gets the answer to the contest question, the next five correct answers will get a free ebook.

5. You MUST enter by either private messaging me here in the contact section of http://yvonnedesousa.com/contact/or by sending a private message to my website Facebook page Yvonne desousa.com If you chose to enter using my Facebook page, please like it if you have not done so already.

 

6. Your answer must be specific.

7. Only one guess per person allowed.

8. Regular followers of my blog have a slight edge as the contest is based on book trivia that you may or may not be able to figure out from things I have posted about previously.

9. Friends and family are eligible to enter as long as they don’t actually know the answer. That leaves my writing group out. Ok, they can enter the contest but they just can’t win!

10. If you don’t win, don’t fret. There will be additional contests in December and January.

 

Ok- are you ready for the contest question?? Here it is-

Chapter 19 (Hey MS, Hug This!) is one of the more serious chapters of MS Madness and details one of the most frustrating aspects of living with multiple sclerosis. What is that aspect?

Hint- it is not the MS Hug.

Thank you for entering and good luck! Please don’t forget to submit your entry via private message.

And now, for-

Today’s DWTS moment-

 

This is a brief moment as there is nothing much to be said except-

Holy Dancing Jack! Semi-finals, here he comes!!!!!

I see a possible Mirror Ball Trophy in Jack Osbourne’s future but he can’t do it alone.

 

Vote for Jack Osbourne and his partner Cheryl Burke by calling 1-800-868-3402 up to 60 minutes after the show on Monday nights or by logging onto ABC.com or Facebook.com/votedwts up to 24 hours after.

 

Note- this actual blog post was originally published in May 2013 on MSRelief.com

 

 

 

 

 

 

 

 

This MS Moment is Brought to You by the Letters ‘F’ and ‘U’ and the Number ‘2’

Multiple sclerosis meets therapy meets Sesame Street

ID-100148062

Dear Friends,

This week’s blog is an oldie but goodie and one of my favorites.  I chose to re-post this one as I am feeling a little overwhelmed this week.  However, it is important to note, I have not yet returned to therapy.

It was Elmo that finally did me in. Yes, Elmo, as in Tickle Me. But maybe that is not fair. While he was the catalyst, it was really his helpful, female puppet friend Betty Lou that was the root of my actual demise.

It didn’t help that I came late to the magic and wonders of Sesame Street. Growing up in the early seventies, public television was a somewhat radical concept and the new children’s programming seemed to threaten subversive and counter-culture undertones in my mom’s mind. The Brady Bunch and The Flintstones were much healthier- nice, safe family values.

 

As I grew out of my toddler years her television concerns continued. The Partridge Family was NOT ok. The fact that Mrs. Partridge was traveling around the country in a bus and allowing her children to perform rock concerts in front of out of control teens was EXACTLY what was wrong with the country. At least that’s what my mom always said.

By the time she became a grandmother she relented somewhat and relaxed her television rules. I would watch Sesame Street with my four year old nephew and we enjoyed it immensely. I remember rolling around on the floor laughing and crying after a recent breakup with some guy or another while Patti Labelle sang How I Miss my X to a very sad looking X. I thought the scene was adorable and was speaking directly to my heartbreaking soul.

“Drew-don’t you get it? Her ex is the letter X! Isn’t that a riot? And look, X misses her too. They’ll get back together- I just know they will.”

My nephew looked at me as though I was nuts and ran off to play with his toy fire engine.

Anyway, back to modern day. I was in the midst of a horrible month filled with paperwork, appointments, highs, lows, good news, bad news, good advice, bad advice and whatever else one can throw into a month. After a frustrating breakdown during appointment number six, it was recommended that I see a therapist.

ID-10029570

Thus it was that I was at appointment number seven in the lobby of the one therapist that took my insurance and answered the phone when I called. Much to her dismay as it was her lunch hour, I was an hour and ten minutes early. No, I hadn’t bothered to check what time I was due there. My MS brain knew the time.

While she handed me more paperwork to fill out I asked about her practice.

“No,” she told me, “I don’t exclusively treat children.” It was hard to believe based on the emotion charts, animal posters, blocks, and teddy bears that sat in her waiting room.

I started the paperwork while I listened to her pack up the hundreds of Legos I noticed on the floor of her office when she opened the door to greet me. My mind continued to swirl with all that had piled up that month and of all the things I had to do. But it was my fault I was early (apparently my MS brain knew something that her planner and my calendar did not). And so, with this round of paperwork done, I grabbed the thing closest to me to read.

 

It was a book from a Sesame Street series called Sesame Street Library. In it, loveable Elmo ventures into the library looking for a Little Black Puppy. As he searches he gets distracted from his important task by story hour. I do that all the time. Could Elmo have MS too?

He meets his buddy Betty Lou and, when asked, remembers his mission. Betty Lou offers to help. She gives him all library info he could possibly need and then produces a book called, you guessed it, Little Black Puppy.

Poor Elmo has been misunderstood. I can relate to that too. More evidence our furry red friend might be afflicted with a myelin damaging illness. He explains his plight again. He is looking for an actual puppy that is missing and happens to be black and little.

ID-10024270

Again, the kind Betty Lou wants to help. Back to the card catalog they go and then to the stacks where she produces a book called How to be a Detective.

“There Elmo, you can read this book and then you will know how to find your puppy.”

It doesn’t end there. Betty Lou is a dear friend after all and really, really wants to help so she proceeds to find several other detective books to help Elmo in his search. Elmo excitedly thanks her.

That’s when I lost it. In the lobby of the therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceeded to yell at Betty Lou.

 

Betty Lou that is NOT helpful!!!!! What kind of friend are you? I know you mean well but if you really want to help, start looking for the damn dog! How long do you think it will take Elmo to read all those books before the search begins?

After reading the books he will have get the detective kit and then start questioning people and calling insurance companies and hitting search engines and all kinds of crap that take time he doesn’t have. Can’t you just help look in corners and yell ‘here Fido’ or something? How bout you read the damn books and then get back to him?”

ID-10083617

Poor Betty Lou. Perhaps she didn’t deserve my wrath but she was not alone. Elmo was next on my “need a good talking too” list.

Elmo, don’t be a putz! Tell Betty Lou what she can do with her freaking books and where to go. Don’t stand there with that stupid smile expressing all kinds of false gratitude. Throw the books at her and start looking for the dog.”

I suppose the moral of the story was that you can find anything in a library. But I have yet to find a dog there and in my current state, and not being a kid, the message was lost on me.

Perhaps my outburst caused the therapist concern. She called me in and handed me ten more pages of paperwork to take home and fill out at my leisure. She asked me what I was looking for, therapeutically speaking. Then she told me where I could research the answers to what I was looking for. She recommended some books. I smiled and expressed all kinds of false gratitude, just like Elmo.

I am even more convinced than ever that MS has got him too.

 

Image courtesy of [David Castillo Dominici] / FreeDigitalPhotos.net

Image courtesy of [Ambro] / FreeDigitalPhotos.net

Image courtesy of [posterize] / FreeDigitalPhotos.net

Image courtesy of [Phaitoon] / FreeDigitalPhotos.net

Invisible Idiocy

Multiple Sclerosis Assumptions

ms pin0001

Warning- this latest blog is less funny and possibly the most likely to get me sued, so far anyway.

My mom always taught her daughters that when you ASSUME something, you make an ASS out of U and ME. This is a lesson I have heard hundreds of times and should know well.

Yet, when I recently read a blog titled Understanding the Invisible Symptoms of MS, I ASSUMED this would be directed towards the people of the world who ASSUME there is nothing wrong with you when your chronic illness isn’t visible.

But instead, the blog talked about depression as an MS symptom and was directed towards helping caregivers and patients cope with and help those struggling with it. A well intentioned and important post it was of course. But I was disappointed that my assumption was wrong.

I thought, hoped actually, they would be taking about what I have taken to calling invisible idiocy and that it would be directed towards the general public. With more than two million people diagnosed with multiple sclerosis in the world, and an additional 200 people diagnosed weekly in the US alone, (according to the National MS Society’s website and verified by many other sites- they really should update these statistics; they haven’t changed since I was diagnosed three years ago), it seems to me that it is time for folks to get a clue.

And not just about MS, but also about the many invisible illnesses in this world: fibromyalgia, lupus, cancer, chronic fatigue, depression and several others. Shouldn’t there be a blog that shows regular people how to get off their high horse and learn a thing or two? How about starting with teaching them that they don’t know everything?

 

duhhh0001

Duhhhhh!

The problem is, that a person who happens to be one of the people who thinks they know everything, would “know” that I must be describing someone else. Bill Cosby once said “a word to the wise ain’t necessary, it’s the stupid ones that need the advice.”

The first piece of advice they need is that they just might be the stupid ones. These are the individuals who love to flash their “you must be faking, you look fine to me faces.”

MS’er’s you know who I mean.

The people who tell you that you are fine, nothing is easy, everybody has their troubles and then proceed to whine to you about the hangnail that is just driving them crazy or how long in line they had to stand at the pharmacy for their flu shot. Try standing in line when your legs are on fire for medication that is supposed to put the fire out, if you can afford it.

I prefer this group as at least they have some guts behind their assumptions and the courage (or nerve) to voice them out loud. Then, maybe, you might engage in a conversation that MIGHT help set them straight. Or not.

The group that is the worst is the smirkers. I could give you examples but this blog would turn into a book and I haven’t yet published my first book. But likely you know who I mean.

I would like to be brave and call out one of these smirkers for smirking but with my luck it will be the one time someone is smirking at me for something else- say wearing white after Labor Day. (Unlikely as I never wear white before Labor Day or after, white shows too many food stains).

“If you were just more careful or chewed your food more slowly, you wouldn’t have food stains.”

Yes, that’s it. I enjoy walking around with food stains on my clothes and hence why I keep repeatedly dropping food on me, even as I am the last one to finish lunch and those around me are chomping at the bit to get up.

Here is an interesting fact for people in the know. Just because I look fine doesn’t mean I feel great and am just faking. Frankly, if I was that good an actress I would be in LA.

It can go both ways. Just because you look lousy to me and your continued whining is driving me crazy, doesn’t mean you are basically healthy.

The point is, we can’t possibly know what is going on inside of others so what is with the judging and assumptions?

For example, it would be wrong of me to assume you are a creep. Again, I should not assume anything. But in order to deal I will just hope instead of you being a jerk you are just an idiot instead, an invisible idiot.

It is better to keep your mouth shut and appear stupid than to open it and remove all doubt,” said Mark Twain.

 

This will be how I deal, so that I don’t resort to Dr. Seuss for survival.

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I’ve bought a big bat. I’m all ready you see. Now my troubles are going to have trouble with me.”

Mostly because a bat is a little too heavy for my healthy looking weak arms…..

ID-10056127

 

**The blog post, Understanding Invisible Symptoms can be found on the website, http://www.disabilityinfo.org/blog/?p=3085

***For actual statistics, go to http://www.nationalmssociety.org/index.aspx

****The quotes from the funny people above, can be found in the Laugh Lines section of this site. For more humorous looks at life from other great minds, check it out, http://yvonnedesousa.com/laugh-lines/

 

Image Credits-

Zazzle Inc.

My HS yearbook-yikes!

Image courtesy of [farconville] / FreeDigitalPhotos.net