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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Chop their Happy Little Heads Off Again

Multiple Sclerosis gets ready for spring

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I tried friends- I swear I did.  I ventured outside one day earlier in the month when it was actually nice.  I noticed the lovely colors and the smell of mulch and thought maybe the coming weeks weren’t so bad.  

Then the Bruins lost their playoff bid ending their season and the sun was still high in sky at dinner time.  And so I went right back to longing for a freak April blizzard. When none came, I had to accept that winter was over and there was nothing I could do about it. But it doesn’t mean I’m happy about it!  To see why not, please check out this old blog….

It’s official- spring is here.   And I am probably the only person in the world who’s not happy about it.

The rest of you are lying to yourselves about how wonderful the arrival of spring is.   To me, what spring really means (think of this in the singsong voice of Dorothy from the Wizard of Oz), “heat, and pollen and bathing suits, oh my!”

None of which I am excited about.

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The heat and pollen completely do me in medically speaking and only serve to make me long for the cool days of fall and winter when it is perfectly acceptable to curl up under a blankie with a good book and a cup of tea.  Unfortunately, that cup of tea also includes a cookie or two which is why I must throw in the bathing suit part of my dread.

How do I know spring is here?  Is it the weather?  Of course not.  I live in New England and it was seventy degrees last week with a chance of snow for the following weekend.

Is it the ridiculous looking daffodils that shot up on the sides of roads and yards as soon as one March day’s temperature hit over 40 degrees?   Everyone sees the yellow and white blooms and begins to remark how lovely the flowers are, even as they sneeze and sniffle away.

“What a joyous reminder of the change of seasons we have,” say those jaded spring loving fools.

Many can look at the daffodils and see their sappy little faces just oozing smiles and grins.

“We have sprouted and we are so beautiful,” they seem to gloat.

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I just want to bring out my scissors and chop their happy little heads off.  Right before I run to the store to buy more tissues and allergy drugs.

Crucially important disclaimer.  While I honestly admit that I want to chop off the heads of the happy little buds whenever I see them, with one hand on the Bible as I type I SWEAR that I did not actually cut the daffodils in my friend’s yard.  I may enjoy fantasizing about early flower homicide but I would never actually commit such violence.  My deepest sympathies go out to my friend who is still mourning her flower loss and bad season vibes to the person who committed the vandalism.   May pollen forever coat your car you real flower killer.

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But again, how do we in Cape Cod know when spring finally arrives?  For some maybe it is the influx of traffic on our local roads complete with construction to tie up those roads.  Construction that begins right about the time everyone decides to leave their homes after winter hibernation and get out and enjoy the unlovely air.

Is it the sounds of businesses opening or the lack of complaints about the people who frequent those seasonal businesses? No.

For me what made it official that spring is here was this- today I found a dead carpenter ant on my kitchen floor.

That, like no other sign lets me know that I am in for it.

This dead ant is a warning of great trouble to come.   I don’t know how he died or why he chose to die in my kitchen but I can correctly assume that he has lots of friends that will come looking for him.

I am a Christian and believe that God created all things, even happy looking ridiculous daffodils that sprout too early and annoying bugs that invade my home.  But why do they have to invade my home?  You don’t see me going to their house and collapsing on their little ant hill floor.

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I know the Bible that I have just put down says that I am to care for all creatures and feed them when they are hungry.

Ok, I am good with that.  Hey ants, tell me what food you like best and I will deliver it.  Brownies?  Sure, I will surround a trail around your little ant hill.

Chips?  Absolutely. Barbecue, sour cream and onion or just plain?

Spilled drinks?  Name your favorite-lemonade, Kool-aid, oj, milk- whatever and I will pour it all over my yard.

Whatever you want just stay out of my home, at least until you help pay the rent.

The Bible also says you must shelter those who are homeless.

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Fine, I will build you little bug shelters around my yard, hey even around the daffodils that an old tenant planted, giving you a nice happy view.  I just don’t want to throw you a party in my living room.   I have enough trouble walking without tripping.  Worrying about stepping on you dead or alive is just too much trouble.   You gross me out and, like the flowers, remind me that my least favorite season is here.

After I try to get rid of you I will need to pull out my AC and fans, dust the pollen from everywhere daily, do errands first thing in the morning to avoid crowds and in complete terror try on my bathing suit in case I ever happen to get enough energy to actually hit the beach.

Ahhh, the beach.  The colors of the water are especially gorgeous right now.  And, since it isn’t that hot yet and the mosquitoes and green heads haven’t arrived, maybe I can actually enjoy hanging on the beach for a bit before the real humidity sets in.

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And hey, since my MS feet have gotten used to the “sand in my toes” tingly symptom, maybe I can actually walk on the beach and get some exercise.

Ok, so maybe there are one or two perks to this least favorite season of mine.

Dead bugs and overly zealous flowers are not among them however.  Quick, find me some bug spray and garden clippers and let’s get through it.

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Holy Multiple Sclerosis!

MS negotiates Holy Week

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Friends- my blog takes an aspect of my life living with multiple sclerosis and then pokes gentle fun of that aspect.  For me, religion is a big part of my life and thus, is where this particular blog post developed.  Please don’t let the religious topic alienate you as I think whether or not you attend Church, you will relate to some of the things I mention.

BUT, if you’re looking for some faith based fun and inspiration, all the better!

I grew up a casual Catholic, receiving the main kid/young adult sacraments while hardly ever going to church.  Then I unofficially stepped away from my faith for a bit- meaning, I got lazy and just didn’t think about it too much.

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Somewhere between 10-15 years ago God compelled me to walk back into the church of my childhood and I instantly realized all that I had missed.  The point being, I am now a practicing, pretty devout (although that word is hard to define,) Catholic.  And so I should be pretty familiar with how and when things go when it comes to Mass.

Leave it to multiple sclerosis to throw that off a bit!

You can probably guess some of the obvious ways that MS tries to mess with my faith, like when it comes to fatigue.  Since there is a shortage of priests (anyone thinking of becoming a priest- do it!  The church needs you and no worries, the vestments are way cooler than they used to be!) my parish priest is actually the priest of two parishes which means Mass on Sundays is at 8:30 AM.

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Who the hell, oops, I mean heck, is even up at that hour????  There’s no way MS is going to let me get out of bed at that time every Sunday.  Luckily, there is a vigil mass the night before.

Of course the cognitive difficulties don’t help, especially since just last year the powers that be revamped the wording of some crucial and common elements of Mass.

(Ok, they actual made these changes several years ago but it seems just like yesterday.)

When someone says “Peace be with you,” if you respond “And also with you,” you haven’t been to Mass in a really, really long time.

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Or you have MS.

(If you start thinking of Darth Vader that just means you’re a child of the 70’s.)

If you are Catholic and are constantly trying to figure out the best time during Mass to use the restroom without being too disrespectful, you may have MS.

And you would think the whole stand, sit, stand, kneel, stand, kneel, sit again thing would be tough but since it’s really the only exercise I’ve been getting lately, I’m ok with it.

But this Holy Week MS threw some different church related issues my way.

It started at the Palm Sunday vigil.  My friend and I had gone together and we both wanted to make Lenten confessions.  She went in first and was in there for a really, really long time!!

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What could she possibly be confessing too???  The whereabouts of Jimmy Hoffa?

Since our priest had to start Mass soon I was getting pretty anxious, so much so that as she opened the door to the confessional, I grabbed her and yanked her out!

(Ok, that’s not quite true.  There was actual a guy ahead of me.  It was him who I really yanked out.)

Back in our pews, we suddenly heard this booming voice from hidden speakers welcoming us to church.  Mass usually starts with a hymn.  I grasped the pew and began looking all around.  Was this it?  Was Jesus returning to Earth, right then in my little parish?

Ok, if it was, that would be a good thing but I must have looked a little panicked anyway as my friend giggled and reminded me that the voice was our Priest using a microphone from the vestibule behind us, blessing the palms before the opening hymn.

I’ve been to Palm Sunday masses several times.  I should have known this but I guess this little bout of confusion is a good reminder to be prepared, HE can return at any time.

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Then there was the issue of where to put my palms.  They are long and delicate and there is really no place to put them. My friend was on the inside of our pew and nobody was next to her so she had tons of room to lay her palms down.  I did not.  I certainly couldn’t put them on the floor- these were a symbol of Jesus’ triumphant entry into Jerusalem; the floor was no place for palms.  It didn’t seem right to put them behind me in case I crushed them or sat I them.  This became quite a frustrating problem. I finally to decided to put them in the little box where the church keeps the missals.

My palms promptly started to fall to the floor.  I saved them just in time and then did my best to carefully prop them in the spot so that they would safely stay there.  The problem was solved just as my priest arrived to bless them and I had to quickly disassemble and raise them, only to get them blessed and start the safely propping process all over again.

My friend just shook her head in disbelief.

MS and I managed Holy Thursday and Good Friday ok.  The next issue came at the Easter vigil.

Due to the two parish issue this service was being held at the OTHER church.  My priest needs to alternate this service yearly since it is a long Mass and this year was THEIR turn.

I don’t like it.  I like my church.  My church is perfect. My church does everything perfectly, including collection.

See, at my church we have ushers who have baskets with long handles and all you have to do is toss your money into it.  If your aim is bad, that’s ok because the ushers enjoy playing a fun game of catch the bills with their baskets and it always works out ok.

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But the OTHER church has a basket they pass around and I’m just not used to that. I was at the vigil with another friend and when the basket came to her, she went to hand it to me and my hand did one of those MS jumpy/leapy things, the same jumpy/leapy thing that causes me to accidentally flip my flip phone into the air.  (And my friends want me to upgrade to a smartphone- yea right, like that would be smart. Total MS random thought, if I am constantly, unintentionally flipping my flip phone would I actual learn to be smarter with a smart phone?)

Anyway, back to the collection basket. When my hand did the jumpy/leapy thing that could also be clumsiness but I’m blaming MS like I always do, my friend accidentally jolted the basket and some of the money fell out.  She grabbed it and put it back in but was totally mortified.  Personally, I thought it was kind of funny.

I didn’t think much of it, until the second collection when the usher wouldn’t give us the basket!  Clearly, he no longer trusted us. Wow.  Those parishioners at that OTHER parish are so uptight.

Or, perhaps, he was just saving us the embarrassment of another basket fail.  Maybe he was actually trying to make it easier for us- no worries for the clumsy ladies- he was on it.

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And even though the choir at the OTHER church wasn’t my church’s choir and the stained glass windows weren’t the stained glass windows at my church, they were both pretty cool.

And the people were pretty cool too.

And I suppose Jesus probably doesn’t love THEM more than he loves us.  So I guess the point is, we are all in our faith together and we are all brothers and sisters of Christ.

No actually, as this is an MS blog the point has to be about MS.

So, the real point is that, me, life, faith, and God, we can all handle whatever MS decides to throw at us!  And sometimes, we’ll even make a joke about it.  Or turn it into a blog..

Happy Spring Everyone- HE Is Risen!

(Well actually, he rose like four days ago but my blog comes out on Fridays so there you go…..)

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Tumble Bunnies for Easter

A retro MS post for spring

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So this week’s blog post happens to coincide with Holy Week which means that it also coincides with religious obligations, family obligations, friend obligations, MS obligations, life obligations and resting obligations.  What that means is no new blog for you!  Hahaha!

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But I thought this post from two years ago is perfect as it talks about bunnies which people often associate with Easter, (silly bunny, Easter is for Jesus,) and I am trying to psych myself up to tackle this cleaning project next week.  

I hope you find my cleaning dilemma amusing dear friends!  

And Happy Easter,  Happy Passover (no bunnies but lambs,) and Happy Spring!

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Those of us living with multiple sclerosis understand that our symptoms will change over time, go away, come back with a vengeance, and too frighteningly often, get worse.  This is the unfortunate reality of MS.

MS’er’s are so used to this, that it sometimes becomes tricky to tell what is a new MS symptom and what is just life.   It becomes convenient to blame MS for lots of things.  Sometimes it becomes convenient to blame MS for everything-works for me anyway.

I get really frustrated however when neurologists tell me what I am describing is not MS.  How do they know?   My personal, favorite examples are weird ear noises and always arriving 15 minutes late to wherever I am going.   My sister Laurie has these same symptoms and they started for both of us after we each received our diagnosis.

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Yet, the web, the books, and the docs all say that these are not actual MS symptoms.

So I don’t expect they will accept my latest symptom as MS related either.   They would be wrong.

In addition to the aches, the pains, the fatigue, the uncontrollable bladder, the cognitive difficulties, the ear noises, and always being late, MS has also given me a messy house.

This is particularly frustrating as I have always been a neat freak and a slight germaphobe, even before the word existed.  I like things clean, squeaky clean. A sparkling, germ-free home and lifestyle are just who I am and what I have always maintained.

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But in the years before my diagnosis, cleaning became harder to keep up with; and I wasn’t sure why.  Likely it was because I was working 40 hours and was so freaking tired all the freaking time. I became frustrated at the mess my house became and did my best to wash and mop when I wasn’t working or sleeping.

I even tried hiring people to clean for me.   The two women were from Brazil and their lovely accents reminded me of my Portuguese relatives.   As it was their first time at my house, their boss insisted I stay while they cleaned so that I could make sure they were doing a good job and that they were cleaning the way I liked.  It was hell.

They wouldn’t let me help them and wherever I moved to get out of their way, I wound up more in their way.  And it was beyond weird to sit on my butt while women I barely knew cleaned my own home.

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I told them I was just getting something from my car and drove off, feeling like a fugitive, coming back only when I was sure they were almost done so that I could pay them.  They did a great job, but I just couldn’t have them back.  It was way too decadent and odd.

Then I received my diagnosis and along with it, a prescription for legal speed.

My other issue in my clean compulsiveness is that I have to do my whole small house at once, so the dirty part won’t re-infect the clean part.   I managed this by popping one of those precious pills, blasting some good rock music and dancing around my house with a mop in one hand and a sponge in the other.  I developed some great cleaning/dance moves.  But the side effects of the legal speed weren’t great and when my insurance changed, so did the affordability of the legal speed.

The messiness grew.

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People talk about dust bunnies.  I wish I had dust bunnies.  Cute, little friendly specs of dust that you may occasionally spot in the corner of a room.  I have dust roaches.  They multiply like, well roaches and aren’t so cute.

Recently I couldn’t take it anymore and so I doubled up on caffeine and on my anti-viral meds that somehow help with the fatigue even though I have no idea how or why, and attacked my home.  I decided, like with other things MS related, I should just get over myself and accept my limitations.  I may not be able to do the whole house at once anymore.  So I focused on the most needed rooms, the two bedrooms and the bathroom, essentially half the house.

The small spare room was easy; three minutes of dusting, one minute of vacuuming and change the bed sheets.

My bedroom was a little more tiring but I got it done, capturing bunny after dusty bunny.

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The bathroom was the hard part- scrubbing tiles, toilet, tub and sink, and washing the shower curtain, bathroom rugs, and the floor.

When I was done I was super tired, super hurting, super whiny and super frustrated, but half the house was clean.  I vowed I would rest a couple of days and then do the other half.

Then MS and life kicked in and before I knew it, it was weeks later and half the house was messier than ever.

The major bummer of this new MS symptom is that it doesn’t matter if you take care of it, it will come back.  So now, the unclean half of my house is disgusting and the clean part is no longer clean and I am back to where I started.

The dust bunnies in the bedroom have joined with the dust bunnies in the living room to become these huge dust monsters.

Frankly, I’m afraid of them.

They remind me of tumbleweeds in the desert, especially as they blow around my floor as I pass by them.

Do I clean the really unclean part first and then clean the already cleaned part?

Do I give up and go hide out in a cave, hopefully a clean cave?

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Like many things MS, just trying to sort this out is exhausting.  I can easily keep up with the basics like washing the dishes every few months, and changing the bed sheets every few years.

But it is the major stuff that gets me.

As I type, the tumble bunnies are multiplying and growing.

The inside of my bathtub has turned blue from the lack of scrubbing and who knows what in the well water that runs through my faucet.

It is hard to know if my eyesight has worsened or if it is the layers of dust on my TV and computer screens that are blurring the images they are projecting.

I will just do what MS’ers like me do and learn to adjust.

At least the blue on the inside of my tub is a pretty blue, I will think of it in a decorative sense.

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Maybe the dust covering the TV is there so I don’t actually have to see Nicki Minaj and Mariah duke it out.

And maybe stepping around the tumble bunnies is great practice for keeping my balance steady.

This is how we MS’ers role; finding ways to work within the bounds of the symptoms of the illness.

So whatever you do, don’t tell me that my messy house is NOT a symptom of MS

And if I am supposed to meet you somewhere and am more than 15 minutes late, look for me under the tumble bunnies- they may have finally attacked.

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MS Moments Not So Magical

What a multiple sclerosis moment REALLY looks like

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This magic moment,

So different and so new

These are the opening lines of a sappy sweet song by the Drifters that is actually about a couple falling in love.  Yet the song is stuck in my head as I am analyzing and over analyzing other “moments” in my life.  The opening lines fit with the undesirable moments I am talking about; moments that have nothing to do with the rest of the song which is really about, well, desire.

I think the MS community might have stolen the term “MS Moment” from another community, namely, the elderly.  It seems to me that before MS ever really entered my consciousness in any serious way, I heard a lot about “senior moments.”

Actually, just before I was diagnosed myself, I was having a ton of “senior moments” which was scary as I was only in my thirties.  And I wasn’t drinking anywhere near as much as I used to.

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Turns out my senior moments were actually bouts of cognitive deficiencies that as I talked to other people with MS, became MS moments.  As I go about my life looking to be cheered up by a giggle or two, I can actually find some of these moments amusing.

There was the time that I tried to reheat my large mug of tea in the microwave only to have the mug not fit.  I struggled and struggled and grew confused as this was something I did all the time.  There was no reason for the mug not to fit.

Minutes of drinking lukewarm tea later, I realized that the problem was that the “microwave” I was trying to put the mug into was actually the toaster oven.  How does this happen?  They aren’t even near each other on the counter.

Or there was time I got all dolled up and was so pleased that my hair was cooperating that I sprayed it with hairspray to keep it that way.  But as I suddenly started to gag my hair moved and I realized the problem was that my “hairspray” was actually body mist.

And no, it doesn’t hold your hair in place and what they say is true- too much of a good thing is actually quite smelly.

And sure, I’ve forgotten to take the cap off my water bottle before refilling it and I’ve put pepper on my yogurt when I really wanted cinnamon. But these are things that in retrospect I actually find funny.

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But then there are the MS moments that can be expensive.  Too often I buy something I don’t need while forgetting the thing I do need, or buy something and then forget I have it even as I am looking at it and then have to throw it away when it gets way past its expiration date.

I’m pretty frugal and so I make a habit out of looking for coupons, cutting coupons, bringing coupons to the grocery store and even taking the coupons out of my purse.  Only to forget to give the coupons to the cashier, realizing this as I put said groceries away back at home.  Being on a budget makes these MS moments costly but since I’m not dealing with super pricey items, I can often laugh them off too.

It gets harder to giggle though when the moments become frustrating.  I like ice hockey and recently read a great article about a Boston Bruins icon, the player who has his own statue outside of the Boston Garden featuring him flying through the air to make a goal.  Only a couple of days after reading the article I had forgotten this famous player’s name.

Everyone knows this guy’s name.  You can’t say you are from New England if you don’t know this name and I had just read his name over and over.  I had to admit my cluelessness and ask a friend who gently reminded me that the name I was looking for was Booby Orr.

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But I’m sure I didn’t have to tell you hockey fans that.

This multiple sclerosis moment was frustrating in a recreational way.  But it can get more serious when I do things such as search over and over on important paperwork for a crucial deadline only to not see the deadline and turn the paperwork in late.   Or, when I check and recheck the paperwork only to submit it and find out I did half of it wrong even though I checked it, rested, checked it again and checked before turning it in.

Then there was the time I forgot how to spell my own name.

It probably doesn’t help that my last name is a little unusual with the first two letters of it being lower case and then a capital letter three letters in.   What makes it even more baffling is that my cousins don’t spell it this way.  They capitalize the first letter and then the third.

(Thanks dad and Ellis Island for making even our last name confusing.)

Two years after it had been up I was looking at my website and realized that my name was spelled wrong.  How could my web guru have made such a mistake?

I fumed.  I furied.  I frustrated and decided I needed to rest.   I came back to the website and grew even more angry when I saw the misspelling once again.  Yvonne deSousa.

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It was later in the day, just as I was about to send off an email requesting an immediate correction when I realized that my guru had spelled my name on my website exactly as I spell it.  He hadn’t messed it up at all, I had just forgotten how to spell my own name!

(Slight plug for my web guy as he really is awesome and I’m embarrassed about the above issue still.  If you are looking for web help, you can find more about his expertise here-Kemp Resources.)

Many people will say “we’re all spacey” or “I do that all the time..”

But with MS moments the problem is that we aren’t able to check our mistakes because even when we check and re-check them we don’t see the mistake.  It’s like our brain doesn’t accept the mistake as a mistake once we make it.

I don’t know if this also happens with senior moments as what I always thought  were senior moments were actually ms moments and so now I don’t know what to think.

Then there are MS moments that are just not funny at all.

Recently I was taking a shower and being the good conservationist I at least attempt to be, I shut the water off while I soaped up.  When it was time to rinse the soap off, I could not, for the life of me, remember how to turn the water back on.

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This wasn’t a quick lapse of memory.  It took me a while to figure out what to do and how to get the water back.

Who can measure shower time? This didn’t last hours or even minutes but it sure felt like it.  It did last long enough for me to begin to panic. After a while, I remembered how to use my faucet and resumed my shower.

This incident was very scary.  Downright terrifying even.

When people ask why MS fatigue is so bad I tell them it is because it makes these issues worse and these issues can be frightening when you think about them in the long haul.  And that is the crux of MS.

As we close MS Awareness Month it is important to remind others what some of the scary moments of multiple sclerosis looks like.  Because at its core it is a terrifying illness that needs research, awareness and a cure.  Like right away.  Like now!

True, I spend my days open to the amusing moments because that is how I survive, no thrive, in the face of the horrible symptoms and unknown future.  I believe life is too short and when you can find a smile, treasure it.

But it’s never lost on me that those smiles don’t take away from the debilitating nature of MS.

Sometimes though, they just might help you power through them….

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Friends, do you want to do your part to help find a cure for multiple sclerosis?  If so, check out iConquerMS and consider joining with others for are working together for a cure!  Signing up is free and easy, even for someone like me!

Post blog note-  

  Friends,  I unintentionally proved my point within this post. A reader commented that I spelled the hockey great’s name as Booby-yikes!!! I didn’t mean to do that and edited and checked and rechecked this blog several times before posting. See what I mean about MS and the cognitive issues? For the record, his name is Bobby Orr! And yes, I do find this MS moment amusing. I don’t know if Mr. Orr would however…

Focus image courtesy of Master Isolated images at FreeDigitalPhotos.net

Drunk woman image courtesy of Saphatthachat at FreeDigitalPhotos.net

Piggy bank image courtesy of bplanet at FreeDigitalPhotos.net

Don’t forget image courtesy of Stuart Miles at FreeDigitalPhotos.net

Shower image courtesy of winnond at FreeDigitalPhotos,net

Smiley image courtesy of Stuart Miles at FreeDigitalPhotos.net

 

Rock and an MS Hard Place

Multiple Sclerosis goes classic

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I am a child of classic rock.

Well, actually, that’s not really true.

It would be true if I was Jade Jagger, Kelly Osbourne, or Liv Tyler.

I’m really the daughter of a Portuguese dad who wanted to be Elvis, and a mom who liked music from foreign men whose lyrics she didn’t even understand- think Julio Iglesias, Placido Domingo and Luciano Pavarotti.

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My dad wanted to be Elvis so much that he named me after Elvis’ famous daughter, Lisa Marie Presley.  It didn’t really make sense to me since the only way that could be true was based on my middle name Marie being the same as Lisa’s, but which also happened to be the same middle name of about 98% of females of Portuguese descent.

Anyway, I majorly digress.  Where I’m going with this is that despite my musical upbringing, for good or bad, when multiple sclerosis gets really horrible, classic rock music comforts me.

Hey, you have your thing, I have mine..

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It comforts me so much, that it’s way up there on the list of things that I find comforting.  The list goes something like this- God, humor, classic rock and the Boston Bruins.

Oh yes, family, friends and drugs are on the list too but all of them are getting annoyed with me writing about them.

And I’ve learned that it’s not just the hard hitting drumming, the amazing guitar solos and booming bass that bring comfort and help to induce some much needed energy.  (Insert scary image here of me trying to dance around my apartment while a good radio station plays in the background.)

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But, I have begun to realize that even in unobvious ways, the lyrics are a huge help too.

As Keith Richards always says, a man with three daughters by the way, the meanings behind many of his lyrics are hard to understand but the emotions they invoke are not. But me, I think I have discovered the meanings of some classic rock classics and can explain their multiple sclerosis connection.

Don’t believe me?  Well, I can prove it. Here are some of my favorites-

I’ve been bit and I’ve been tossed around

By every she-rat in this town

Monkey Man by the Rolling Stones.

This one has a double meaning for me as “she-rat” refers to MS drugs made from Chinese hamster ovary cells (which definitely bite) and by the fact that I was such an ugly baby my sisters told me I was adopted from a monkey family.

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The Stones are actually very concerned about people with MS.   “I’ve been soaking up drink like a sponge,” is a line from their song, Dear Doctor.  I’m sure the drink they are talking about is H20.  What else could it be?  In the title alone, it is a medical song.  Who can say that the doctor they are talking about is not a neurologist?

For more on Rolling Stones songs with MS themes, check out my prior post Like an MS Rolling Stone.

Ain’t it funny how a crowd gathers around anyone living life without a net       Dogs on the Run by Tom Petty

This song refers to people noticing those of us with balance issues trying to survive an icy sidewalk.

I’m going off the rails on a crazy train- Crazy Train by Ozzy Osbourne

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Does this one really need further explanation?

Hot legs, wearing me out.

Hot legs, you can scream and shout 

Hot Legs by Rod Stewart

What could Rod possibly be talking about other than painful and temperature sensitive extremities?  I know he wasn’t meaning this in a sexual way as this was one of my first nephew’s favorite songs when he was only five.

Rod Stewart - Hot Legs.

Still not convinced?  Later in the song Rod talks about needing a shot of vitamin E which is used to strengthen weak cells.

Ha! Try defeating THAT argument!

Lay lady lay, lay across my big brass bed   Lay Lady Lay by Bob Dylan

Thank you Bob. I am so freaking tired and a rest would be awesome

Though nothing will drive them away

We can beat them, just for one day  

Heroes by David Bowie

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It seems to me that Mr. Bowie is referring to some of our worst MS symptoms.  They aren’t going anywhere any time soon.  But as long as we are not in an exacerbation, we may be able to beat them. At least, just for one day.  And calling us Heroes?  Thank you!  I think we MS’ers are heroes too!

And for those of you who think real classic rock only belongs to men, allow me to add I’ll Stand By You by the Pretenders, lead singer Chrissie Hynde.  To that song I say, “You’ll stand by me?  Thank goodness. Someone needs to. I could fall over at any time…”

One way or another, I’m gonna find ya

I’m gonna getcha, getcha, getcha, getcha

I’m gonna win ya…  

One Way or Another by Blondie

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I do not think it a stretch to assume that what Deborah Harry was looking for was a cure.

I could go on and on with more from both male and female rockers but that would involve pulling out all of my old albums and cassettes and spending hours and days in a joyful celebration of great music.  (If you don’t know what an album is than this blog is DEFINITELY not for you!)

While I would enjoy doing that, I think I have clearly made my point.  And now it is time to rest.  Oh yeah, I forget, rest also goes on the list of what comforts me when MS hits.

Speaking of hits, hey MS, Hit me with Your Best Shot, Pat Benetar style.

You tough cookie you…

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Image of guitar boy courtesy of AKARAKINGDOMS at FreeDigitalPhotos.net

Image of Elvis dude courtesy of iosphere at FreeDigitalPhotos.net

Image of headphone girl courtesy of iosphere at FreeDigitalPhotos,net

Radio image courtesy of Stuart Miles at FreeDigitalphotos.net

Images of the classic rocks stars I used in the blog I totally stole from internet profiles.  I’m hoping that because I love them so they won’t sue me….

 

 

 

Super Blah!

A multiple sclerosis alter ego

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Spiderman had the Green Goblin.  Batman had the Joker.   Is it possible to have a super hero without also having a super villain?

This thought occurred to me recently when I was reading an awesome MS blog by an awesome MS blogger, Melissa Cook.  She blogs about life with MS on MSsymptoms.me

In the particular post I was reading she explained a multiple sclerosis phenomenon that I could totally relate to.  Her post is titled Super Powers to the Rescue and it describes how in times of crisis or intense stress, we seem to discover amazing energy sources and strength we never knew we had.  Activities that would normally do us MS’ers in, we seem to ace just when we should be feeling our worst

Personal case in point, just last week I left town for a few days to say goodbye to a beloved uncle, my family’s patriarch.

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(Speaking of super powers, this loving man never missed one day of work in his entire life and was married for 60 years- that is some super strength right there.)

Amid the funeral arrangements, grief, worry and drama that can happen during a difficult time, I did ok.  Miraculously ok since I had forgotten to pack my energy inducing pharmaceuticals.  Suddenly I was able to stand for longer periods than I normally would be able to.  I was operating on far less rest than I usually would get.  I remembered things I would normally forget and understood things I normally wouldn’t understand.

I saw many friends and relatives I don’t see often and they remarked on how well I seemed to be holding up.  But what they didn’t see was the debilitating crash that came after, the days I spent in a major fatigue induced emotional hangover.  In the aftermath everything that could possibly ache ached and everything that I could possibly forget was forgotten.

Thankfully I had read Melissa’s blog and so somewhere in the cognitively limited resources of my brain, I had an inkling of what was going on with me.

Ah, MS, it taketh away.

It taketh away a lot.

But sometimes, when you need it most, it giveth too. Sometimes it can giveth the super powers you are desperately needing when you might desperately need them.

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This understanding made me think of super heroes which made me think of villains.  I decided we needed a name for the villain that shows up in the aftermath of these super powers.  The evil arch-nemesis that does everything it can to rob us of our personal super powers.

Hence, I created Super Blah!

This is the alter ego we unwittingly transform into when MS decides to decimate the super powers it recently bestowed.

Super Blah!’s chief crime is theft- theft of energy, theft of thought, theft of concentration, theft of all the things one needs to function in the aftermath of a super power moment.  In addition to theft, Super Blah! is also responsible for pain, and an increase of all of your worst MS symptoms-for me that meant that my balance and bladder became as obnoxious as ever.

You can’t hide from Super Blah!-  though you can anticipate its arrival.  You will likely see Super Blah! right after you have surprised yourself by feeling good.

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I think the best example of how Super Blah! shows up lies in comparing him to the Incredible Hulk.  One minute Dr. Banner was just doing his own thing and then he would get mad and suddenly he turned into the Hulk.  The difference is that the Hulk was good.  His enemy was Mr. McGee.

“Mr. McGee, don’t make me angry.  You wouldn’t like me when I’m angry.”

Understanding the role of Super Blah! in my life is quite disturbing.  How do I stop this wicked villain in its tracks? I’m not Wonder Woman.  When my super powers are at their best I’m barely Mighty Mouse.

I often do extensive research for both my health and my blog and so I began to investigate what might actually destroy Super Blahs!’s evil powers.  I discovered that I may need super tools. Wonder Woman uses her lasso.  Maybe I could use my drugs?

I learned that my MS medications are somewhat helpful but to combat Super Blah! I needed something bigger, something greater than multiple sclerosis itself, the source of Super Blah!’s power.

Then my research led me to discover something I had never heard before. It turns out that Superman recharges his power with solar energy.  When he’s feeling run down, in need of a super boost, Superman turns to the sun.  With a high dose of the sun’s powerful, Vitamin D filled rays, Superman is back on track!

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Wouldn’t you know it, one of my drugs is super strong Vitamin D!

So I’m going to take a lesson from some of my favorite super heroes and get my strength back.  I will defeat Super Blah!

Maybe not today, maybe not this week.  But I will get him eventually.

Turns out I’m really not Wonder Woman or Mighty Mouse.

I am Superman…

PS If this particular blog post seems super blah it is because Super Blah! was hanging around when I was writing it- blame him! Or her. Or whatever Super Blah! is…

In honor of National MS Awareness Month let’s share some Super Blah! info readers.

What does Super Blah! look like in your MS world??

super boys

Images of Batman and Spiderman in their younger years courtesy of their mom, Kady Green

Image of my uncle’s hardworking hands courtesy of Kristine Soares Photography

Flying super hero image courtesy of vectorolie at FreeDigitalPhotos.net

Good/Evil sign image courtesy of Stuart Miles at FreeDigitalPhotos.net

Sun super hero image courtesy of iospere at FreeDigitalPhotos.net

 

We ARE New Englanders

An MS blog that has nothing to do with MS

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Hi friends

I had a ton of ideas for a new MS humor blog this week.  Then things, namely life, got away from me and I had no time to write one.

I didn’t want to leave you empty handed however and so I offer this piece of writing as a substitute.  I hope it makes you smile anyway.

My plan is to be back at you on Friday the thirteenth, (yikes!) with something new.  Til then, may you all have a health and humor filled week.

Yvonne

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We ARE New Englanders!

We don’t just run on Dunkins, we INVENTED Dunkins!

Every year we expect a white Christmas.  Every year we don’t get a white Christmas. Yet, every year, we expect a white Christmas.

8-10 inches of snow is nothing for us.  But we are going to complain about it anyway,

No storm prep is complete without a visit to the packie.

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To the average home owner an air conditioner and a lawn mower are luxuries, a generator is a necessity.

We can’t wait for summer!  But as soon as we celebrate the fourth, we start counting down the days to Labor Day.

No matter how many times we see a New Yorker get confused in a rotary, we are still surprised that New Yorkers don’t know how to drive in a rotary.

Most of the country never thought much about the word “wicked” until we started pointing out how wicked awesome the word “wicked” really is…

We waited years for the Big Dig to be completed but lose our minds when there is a tie up at the bridge.

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And when we say the bridge we know what bridge that is

We are fiercely, deathly loyal to all of our local sports team, no matter how they are playing.

So loyal that when a scandal breaks out about one of them, local celebrities willingly take credit for it.

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Don’t you dare mess with one of our teams- we will fight to the death to protect their name and reputation.

But we (and only we) have the best curse words to yell at them when they are not playing well.

When Mother Nature hands us lemons, we will find a way to make a buck out of it!  Suddenly everyone has a plow and people start selling snow to crazy people outside of New England.

We know that we don’t talk funny- the rest of the country does.

We have a gorgeous ocean, beautiful bays, and lovely lakes.  But we really love our Dirty Water!

Proud to be a New Englander!

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Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of Victor Habback at FreeDigitalPhotos.net

Image courtesy of Mister GC at FreeDigitalPhotos.net

Image courtesy of think4photop at FreeDigitalPhotos.net

Image courtesy of vectorolie at FreeDigitalPhotos.net

Image courtesy of Evgeni Diney at FreeDigitalPhotos.net

 

A Little MS TMI

An embarrassing multiple sclerosis symptom

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There are not enough words in the English language to describe something that is weird; I know, I’ve checked.

Recently I was told about this neat trick in my Microsoft program where I can type in a word and then right click on it for a list of synonyms.   So, of course I typed “weird” and all that came up was: strange, odd, bizarre, peculiar, uncanny, eerie and creepy.   These adjectives are no match for multiple sclerosis.

Since MS is a worldwide disease, maybe other countries have better words.   But since English is the only language I know, I’m not sure what those words are.

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I used to know some Portuguese but all my MS brain can remember is some swear words that may work but not exactly….

So how then do I explain to you a recent and very personal but weird, (odd, uncanny, peculiar, etc.) symptom?

Since I have started writing about my MS, I have given up on being easily embarrassed.  This symptom however, may fall under the realm of TMI (too much information.)  But it is so, well weird, I have to share it with you.  Forgive me for the graphic nature of this description.

Lately, whenever I have to use the bathroom (which is ALWAYS since one of my most minor but annoying symptoms is increased frequency and urgency of urination-yuck) when I sit on the toilet seat, my right butt cheek feels as though I have sat on something wet.

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There, I have said it.  Gross huh?

And yes, I am sure that is not the actual case. When this happens, I am not sitting in something wet.  Trust me, I have checked that too.

As I am a slight germaphobe (not quite at the Howie Mandel or Monk stage but I can see it fast approaching), I am always pretty careful about what’s going on where I am sitting.

In the cases where I have to use a public restroom (which is becoming harder and harder to avoid,) I am pretty anal (forgive the bad pun) about what I will be sitting on.  Plus, this unique situation (hey I just came up with an adjective that Microsoft didn’t include and yet I still did lousy on all those cognitive tests!), happens everywhere- at home, at my mom’s, at friend’s houses, etc.

What is this and why did it just start and why does it only occur on one side of my butt?

How can this latest symptom (indication, sign, warning sign, indicator,) make sense?

Oh right, it’s MS.

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About the only thing about multiple sclerosis that makes sense is that it doesn’t make any sense at all!

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If this seems familiar to you it may be because I have posted this one before.  And if you’re wondering, this particular symptom isn’t as prevalent as it used to be which is also weird.

And while we’re repeating things, in honor of National MS Awareness Month, I am again giving away three free copies of MS Madness!  A”Giggle More, Cry Less” Story of Multiple Sclerosis.

Sign up through Goodreads for your chance to win!  This giveaway is open to readers in the US, UK and Canada

MS Madness! Goodreads Giveaway

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Emoticon images courtesy of farconville at FreeDigitalPhotos.net

Sign image courtesy of Stuart Miles at FreeDigitalPhotos.net

Toilet image courtesy of Mister GC at FreeDigitalPhotos.net

 

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

Multiple Sclerosis looks to Sesame Street for support

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It’s been kind of a frustrating week.  So frustrating that I didn’t have the piece of mind to write a new blog.  And so the frustrated me offers up one of my favorites…….

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.

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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.

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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.   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.

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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.

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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.  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.

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“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 a therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceed to yell at Betty Lou.

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“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?”

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.”

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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 multiple sclerosis has got him too.

Author’s Note- please remember that my blogs are tongue in cheek and this post is not meant to criticize therapy as a whole.  The point of the blog is to make fun of this particular appointment in a way that makes me (and hopefully you too) giggle about how frustrating it was….

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Image courtesy of  farconville at FreeDigitalPhotos.net

Image courtesy of Ambro at FreeDigitalPhotos.net

Image courtesy of Danilo Rizzuti at FreeDigitalPhotos.net

Image courtesy of nenovbrothers at FreeDigitalPhotos.net

Image courtesy of posterize at FreeDigitalPhotos.net

Image courtesy of  AKARAKINGDOMS  at FreeDigitalPhotos.net

Image courtesy of  iosphere  at FreeDigitalPhotos.net

Image courtesy of  Stuart Miles  at FreeDigitalPhotos.net

Image courtesy of farconville at FreeDigitalPhotos.net