Category Archives: MS Symptoms

Lies, Lies, Lies, Yeah-Re-release

A now old, but new MS symptom


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

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

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

Thank you friends- you guys rock!


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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

“Oh yes please, I can’t wait.”

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

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


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

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

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

“I did!  It was a blast!”

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

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

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

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

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

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

Sometimes multiple sclerosis has a way of working itself out.

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

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

Happy Fourth of July dear friends!!!



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A new multiple sclerosis mode of being


And then there’s Crasher.

You KNOW Crasher.  I know you do.  Deny it if you want but I bet you’ve got the bruises to prove it.

Crasher is not Crasher as in “I’m so wiped out. I’m just going to go crash for the next five days,” although if it was, that would be a good Crasher.


And no, Crasher is not responsible for crashing the best parties or events, crashing them early, while the alcohol is still free.  Oh, how I wish that was the Crasher I’m talking about.

No, Crasher is yet another multiple sclerosis symptom that takes over your whole body and turns you into a whole other mode of being.

I’ve mentioned some of these before.

There is the child I have written about.

“Daddy- I need to go potty RIGHT NOW!”

This child intersects with the grandmotherly little old lady.  “Can you get me a sweater dear?  I’m just going to drink my tea and rest my legs for a bit.”  (The Curious Case of Multiple Sclerosis Part I)

There is Oscar- content to be mean, grouchy and if necessary, to hide away in our personal trash cans in order to protect those around us from our green, foul mood.  (Call Me Oscar)ID-100217470

There is the zombie mode- shuffling about and existing as one of the super undead.  (A Zombie Goes Down the MRI Tube)

Speaking of super, resembling but quite different from the zombie mode is Super Blah- a super hero of utmost strength of unthought and undetermination.  Capable of coming up with no thoughts of your own and if any thoughts do arise, they probably aren’t even made up of real words but fake ones like unthought and undetermination.  (Super Blah)

But now, I have finally accepted and proudly outed- Crasher!

Before this, the Crasher mode was just called clumsy, something I had been my whole life.

As a child, a real child not an adult in MS child mode, I was always covered in bruises, mostly from falling off of stuff I climbed to prove I wasn’t clumsy.ID-10061137

On a high school ski trip the instructor pointed to a tree way to the left of me on the beginner trail and said, “you’re not going to ski into that tree are you?”  I assured him I wouldn’t just seconds before I promptly did.

(Okay- that didn’t really happen to me.  It actually happened to a friend of mine but it certainly could have been me if I wasn’t already sliding down the bunny slope on my butt.  But it was too good an example not to share.)

At the best job I ever had my coworkers took to calling me “Grace” as I tripped around the office, dropping files left and right..ID-100207487

So it was not surprising that desperate for comfort upon learning of my multiple sclerosis diagnosis I asked the neurologist if MS was the reason I was so clumsy.  My friend giggled when the doctor replied “absolutely not.”

But that was five years ago and things that we know about MS have drastically changed.  And here is one thing I do know about MS– it completely, unequivocally, absolutely ramps up my clumsiness!

It ramps it up so much that my clumsiness becomes it’s own persona, way tougher than “Grace.”  “Grace” will no longer do.  Crasher is definitely more like it.

Clumsy is as clumsy does and in my world, what clumsy does is cover me with bruises sometimes just walking across my living room.

Crasher shows up when I am particularly fatigued physically but also incredibly stubborn mentally.

On these days, when I refuse to give into the tiredness and try to go about my world, that’s when I turn into Crasher, tripping, dropping things, throwing things, walking into things, etc.

When I’m perfectly calm and without provocation suddenly throw something I’m holding across the room, that’s Crasher.ID-10043444

When I stub my little toe on the coffee table leg three or four times in one day, that’s Crasher.

And when I walk into a wall just because it’s there?  You guessed it- it’s Crasher.

When I unexpectedly fall and crash into the ground? Let’s say it together-Crasher.

Before I totally blamed the Crasher persona on MS, I decided I needed to know the truth on this one. Was that early neurologist I saw five years ago correct?

I am stubborn and so I decided to do some research. I am proud to report that what I discovered was that she was WRONG!!ID-10056127

Right away I found a website (The that described an early MS symptom as “uncharacteristic clumsiness.”  What does “uncharacteristic” mean to you?  To me, it means I’m blaming MS!

Just one website didn’t seem conclusive enough and so I researched further. (I was likely in one of my random “think I’ll goof off on the web modes”- a cross between the zombie persona and Super Blah.)

I found that talks about the MS symptom of balance and coordination problems although it would seem to me to be more of a lack of coordination problem but who I am to disagree with the web.

And refers to “clumsiness of leg or hand” as one of the many symptoms of multiple sclerosis.

So there you have it, Crasher is yet another multiple sclerosis personality that we MS’ers must accept.  MS’ers are starting to have more personalities than Sybil.

But don’t fret, I’m used to Crasher.  The awkwardness of my growing up years has prepared me well.ID-100200833

I’m used to being covered with so many bruises that I look like rotten fruit.

I’m used to tripping on air- I’ve almost perfected it actually.

And I’m used to crashing- both into things and crashing as in resting after I have crashed into things.

I’m tough. Crasher is no match for me!

But the greatest comfort I take from this knowledge? Ha first neurologist- I was right!

And I didn’t even go to medical school!

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Gag Me with an MS Spoon

Another very scary multiple sclerosis moment mixed with some 80’s fun


You’ve probably heard of the Spoon Theory.  It’s an essay/story/explanation of how one woman uses spoons to describe chronic illness fatigue to her friend. It’s downright brilliant.

I did some research and I think and hope the author of the Spoon Theory is Christine Miserandino.  For fear of Google thinking I’m stealing her work, I hesitate to go into too much detail about it here.  But I encourage you to check it out on the Butyoudontlooksick website.

Actually though, the Spoon Theory has little to do with what today’s blog is about.

Unless you look at it in a random sort of way, which, of course, I always do.

My day began with a new MS scare.

But first, some background.


When I was diagnosed with multiple sclerosis I was addicted to diet soda.   I soon learned that my second favorite drink in the whole wide world (wine holds the top spot,) was poison and I broke myself of the cola habit.  I’m proud to say that I don’t even like the taste anymore and now drink a lot of water.

At an MS talk I went to once a neurologist recommended that for those with bladder issues it’s better to drink the water rapidly, not by taking small sips like you’re supposed to do with wine.  She wasn’t suggesting gulping the water, but she felt lingering too long while you drank it increased your bladder problems.

As I took a regular sip this morning I began to gag.  Really gag.

Yes, we all have had times where something goes down our wind pipe the wrong way and we start to choke but then quickly recover.  This wasn’t like that.  It was way worse.

I couldn’t breathe and I began making these horrific sounds, maybe called wheezing but since I don’t think I’ve wheezed before, I can’t say exactly.


It seemed like it went on for several minutes although it probably wasn’t quite that long.

I would have been frustrated if I wasn’t so frightened; I hadn’t chugged the water and it was water!  What did it get stuck on??

For the record, I have never gagged on diet soda or wine, not even when I was chugging them.

(Yes I have chugged wine but don’t panic; it was in my twenties and it was only the cheap stuff.)

Since I live alone and couldn’t breathe my panic during this choking fit increased.  It occurred to me that I may have to dial 911.  How to explain then, how I started frantically walking around my apartment, away from my cell phone, and waving my arms wildly as if that would help?

It was while I was moving around that something caught my eye.  It was my Footprints in the Sand throw.

Picture 90

(For definition purposes a throw is a very small blanket that is sort of useless unless you throw it on something to cover up something else that doesn’t look very nice.  In this case, my throw was covering an ugly storage bin filled with sappy junk I don’t think I should throw away but don’t know what else to do with.  I use the box as an extra chair.  I like to make objects in my home do double duty.)

Picture 91

Anyway, back to the near death experience. As I was panicking and not breathing, I happened to look down at the throw and caught the words “was only one set of footprints” and no lie, the wheezing began to let up.  Little by little I could feel my breath coming back and I began to panic less.

If you are not aware, Footprints in the Sand is a lovely story written by Mary Stevenson about how God is always with us.  I am convinced it was that line that helped me through my scare.


Many of you may not believe this, but that’s ok.  I do.

And more importantly, this story illustrates what has become my MS coping method.  Multiple sclerosis does something terrifying and I look to my faith to help me through.  And then, to cheer me up I make fun of the scare.

In this case, the 80’s phrase “gag me with a spoon” popped into my mind which made me think of MS as a big old nasty spoon gagging me.  Then my mind begins to wander with random thoughts which lead me back to using spoons in a better way than gagging and made me think of the Spoon Theory.

As my brain easily went from faith to humor to mindless wanderings I slowly started to recover.ID-100248318

By this point, my mind was full of so many thoughts that the choking terror had diminished a bit.

Do I know for sure that the choking was due to MS?  I guess I don’t but I am blaming MS anyway since it was trying to get healthier due to MS that lead me from soda to water.

And, in the past, MS cognition issues have caused me to gag slightly as I have trouble swallowing.  It’s not that I can’t swallow.  My brain just forgets how to do it from time to time and a mild panic ensues.ID-10045271

I’ve also noticed that I sometimes start to gag when I brush my teeth, something that never happened until years after my diagnosis.

It would be one thing if I was gagging on chocolate, ice cream or bad carbs but water and toothpaste are pretty innocent.

Do I know for sure that it was God who physically saved me or if it was the story about God that brought me comfort?

Does it matter?

It does not.  Either way, this particular terror has passed for now and I won this round.

Take that MS!

Just as long as this win counts even if my cognitively limited brain is now swirling between the Spoon Theory, the Footprints in the Sand story and random 80’s quotes…ID-10016881

Since I hate to suffer alone, let me share some of these quotes with you.  If you remember where they came from, then you are having a good MS day!

“Gag me with a spoon!”

“I feel the need, the need for speed!’

“I’m not going to be ignored Dan.”

“I’ll be back.”

“They’re here….”

“All I need are some tasty waves, a cool buzz and I’m fine.”

“Can I borrow your underpants for ten minutes?”

“What’s happening hot stuff?”

“Bueller?  Bueller?”

“Hey, how come Andrew gets to get up?  If he gets up we’ll all get up.  It will be anarchy!”

“I’ll have what she’s having..”

And my personal favorite,

“Nobody puts Baby in a corner.”




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Sunny D is Not Just a Drink

A new multiple sclerosis sting


I’ve been lucky so far on this MS journey, at least when it comes to pain.

There are many different types of pain, manifested in many different ways, to those of us living with multiple sclerosis. How can there not be since MS is basically something no one knows what, attacking our nerve ending which are responsible for all types of sensations?

For me, for the most part, the pain I feel, physical pain I mean, comes in the form of super duper achy aches.  Give me two Aleve and a prescription medication for heartburn since Aleve shreds the heck out of your guts and I’m usually good to go…ID-100326652

That was until just last week.

I wish I could say that everything that happened last weekend was a conscious decision on my part.

I wish I could tell you that I had the natural vitamin D vs. potentially cancerous sun rays discussion going on in my brain.

I wish I could say that when I looked up at the partially cloudy sky I made an educated decision.

I wish I could tell you that I actually thought about MS or pain or my skin or the sun.

But honestly, there was no room for these thoughts on this particular Saturday.

And why should there be?  It was barely spring.  And it was a yard sale.


Some acquaintances had decided to hold a yard sale right in my own rented backyard.  Being the downsizing cheapskate I believe I am, I asked to join them.  That way I could make some money, get rid of some stuff, and wouldn’t have to even advertise- they already did!

I got up early and carried my boxes outside to join my new friends.  And it was actually fun.  I enjoyed their company and tried not to get too freaked out when their junk sold way better than my junk.

I kept hydrated and smiled and peddled my wares and enjoyed the early May breezes and was generally pleased with how it all went.

I thought $40 (mostly in quarters and crumpled singles) was all I got from the morning.

ID-100142636But I was wrong.

The next day I noticed another gift.

It was a wicked sunburn on half of my body.

Not even the good half.

By half my body I mean one bright red arm and one arm still pale as ever.  Way paler than it should be considering the hearty Portuguese stock I come from.

At least my face was spared the half and half look. And by spared I mean that both sides of my nose as well as the tip were sporting the “Rudolph on one foggy Christmas Eve” look.


But what was even worse than the reindeer games image was the pain.   It was the pain that caused me to notice the sunburn in the first place.

Waking up the morning after the yard sale my right side felt like it was on fire.  I’ve had sunburns before- I grew up on a beach.  But never had I hurt like this.

What was really horrible was that the sharp, spiky pain seemed to radiate from inside my body, likely from the nerve endings themselves.  How did the sun’s powerful rays penetrate through all my fat cells all the way down to the nerves?

My whole right arm felt completely useless and it hurt like a motha… well, let’s just say it hurt a lot.

I had never felt throbbing quite like this before and it wasn’t long before I had something to blame.


It wasn’t, of course, my fault for not remembering to use sunscreen or for not noticing that what sunscreen I did have had expired five years prior.  No, this was the fault of multiple sclerosis.

Just like climate change, world hunger, communism, capitalism, consumerism and any other “ism” you can think of, my sunburn was now added to the list of things I blame on MS.

Only MS can mess up what was a fun day outside on a somewhat cloudy morning and turn it into a new level of pain and unattractiveness-trust me, the Rudolph look only looks cute on Rudolph.

But even in this unfortunate, new issue, I was fortunate.

While MS sucks and is horrible and does horrible things and causes even more horrible things, sometimes, just sometimes, it calms down for a while too.  Two days later and the hurt was mostly gone and the redness was a little less bright.


And somehow I actually missed the whole disgusting skin peeling aspect that follows a sun burn.  And so, in this too, I try to be positive.  The worst of this new symptom had passed and lesson learned.

Perhaps I could go on to try to better appreciate the sun this summer.  Especially since now I had $40.

That should be enough to buy some decent sunscreen.


Hope all of you my friends are having a safe and healthy fun start to the summer season!  

To get you through do what I’m going to go- grab some sunscreen, ice water and the nearest AC!


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Holy Multiple Sclerosis!

MS negotiates Holy Week


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.


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.


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.


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!!


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.


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.


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.


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


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!


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!


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.


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.


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.

ID-100182605I escaped.

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.


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.


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?


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.


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


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.


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.


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.

bobby orr

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.


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.


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….


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…

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Drunk woman image courtesy of Saphatthachat at

Piggy bank image courtesy of bplanet at

Don’t forget image courtesy of Stuart Miles at

Shower image courtesy of winnond at FreeDigitalPhotos,net

Smiley image courtesy of Stuart Miles at


Super Blah!

A multiple sclerosis alter ego

super boys2

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

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.


(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.


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.


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!


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

Good/Evil sign image courtesy of Stuart Miles at

Sun super hero image courtesy of iospere at


A Little MS TMI

An embarrassing multiple sclerosis symptom


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.


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.


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.


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


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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Sign image courtesy of Stuart Miles at

Toilet image courtesy of Mister GC at


Super Balls

Multiple Sclerosis investigates Deflate-Gate

ID-10032183 (1)

I went there.  I did.  I went to the topic that has been on the minds of Americans for the last twelve days or so; the topic that has everyone in the country sick of jokes about players and their balls.

The reason why I felt ballsy enough- yes, I did it again- to write about this topic is trifold.

  1. I’m from New England and so I have a very close and important perspective.
  2. I’ve tried and tried but just don’t get football. The game is completely confusing to me. I blame it on MS.  But then again, I blame everything on MS.


3. I saw an interesting multiple sclerosis take on this whole scandal.

But then again, I see a multiple sclerosis take on just about everything.


I didn’t pay much attention to the story at first.  But then when it was all over Facebook, I started to follow it.  In case you are as clueless as I usually am, the basics are as follows;

The New England Patriots won a football game that was so big, it meant that they could play in the Superbowl.  The team they beat was from Indiana, the bolts or colts or dolts or something.

After the game, there were rumors that the Patriots had rigged the game by under inflating the footballs they used.  Some say this was considered cheating and gave the Patriots an unfair advantage.  They were reported to the big sports people who are supposed to sort everything out when scandal breaks.

Everybody expressed an opinion while they waited for the guys in charge of all the balls to respond.

The coach said he had nothing to do with how inflated or not inflated the footballs were supposed to be.


The quarterback just flashed his adorable smile and then showed a picture of his gorgeous wife and so all watching became enthralled with their beauty and stopped listening to what he was saying.

But for me, my concern was for the footballs themselves.  No one was talking about how they felt.  No one asked them, the the subject of the controversy, what had actually happened.

Oh sure, people talked to the experts, the ones who were responsible for taking care of and protecting the balls.  But no one seemed to have a clue about how the balls really felt or what it was like to live as a football.

I could relate.  It reminded me of how I feel sometimes with my multiple sclerosis.

Say there is something I am excited about, a party or a game or something like that.  I build myself up.  I prepare and inflate my mind and body to the best of possible circumstances within my control.  I do everything I can to take care of myself and rest and to look pretty and to be prepared for whatever the event will throw at me, throw pun intended.


I get to the event pumped.  And then, as more and more people approach me, talking to me, tossing suggestions at me, asking things of me, against my best intention, I start to come down.  I want to stay my best, I truly do.  But sometimes multiple sclerosis has other ideas.

Little by little I get weaker and as my legs and back start to ache, I can get smaller too.  But the end of the event it is possible that I have deflated to a soft, wimpy, useless mess in the corner of the event, no longer what I was when I first arrived, no longer as capable as I had been and no longer as able to do what is expected of me.


And it can upset people.  Especially since I still might basically look the same and they can’t tell that anything is wrong with me. That’s when the judging begins.

What’s wrong with her?

Why is she so tired?

Why wasn’t she at her best?

Why wasn’t she able to do what was expected of her?

Why can’t we count on her?

If she is so sick, why does she look the same?


These folks might inquire.  They might ask the experts and the doctors what is wrong with me but usually they won’t accept the responses given.  It is easier to assume there is a scandal or cheating aspect involved.

She probably didn’t take her meds.

She probably took too many of her meds.

She is probably just being lazy.

Her doctors are probably useless.

Maybe her doctors are really doing nothing and scamming her insurance company.

And all the while, these folks aren’t asking me, the innocent, what is really going on.

Can you relate?

Can the footballs at the heart of this scandal relate?

And I don’t even have a talented, beautiful, super couple to defend me.

All I’m saying is let’s take a step back and look at the big picture- if the balls hadn’t lost air as they were exposed to the violence, the elements and the rumors, would anything have changed?


At the very core of the footballs, if they happened to lose a little air along the way, would the players, families and friends who love them, love them any less?

Maybe it’s time to learn what matters and what doesn’t.  As the balls taught us, show up and do the best you can with what you are given.   And hopefully, friends and family, players and coaches, will make the best out of what you are able to offer them.

No scandal needed. No insults, rumors or drama.  Just have faith that when your balls tell you they are doing the best they can, or are or are not as big as they’re supposed to be, it’s how they’re are treated that really matters.

You may say I’m crazy.  And maybe I am.  But I no longer care.


There’s a big, super game coming up and that’s where the real focus should be.

As a New Englander, I’m going to do my best to be as supportive of the balls as I can be.

Especially since I don’t really get their job. And since I may not be completely inflated myself, I’m just going to trust that they mean well and are doing their best.

If this whole situation has taught us anything, it’s that we need to protect our balls.

Truth is friends, I’m so clueless I will have no idea if they are doing their best or not.  And I may bore easily and change the channel.  But in my NE/MS heart, I am rooting for them and saying come on NE, do the best you can with the balls you are given!

Dear friends, please remember that my blog posts are tongue in cheek and I’m not afraid to get a little silly to try to make you giggle.  Whoever you are rooting for on Super Bowl Sunday, have a great game!



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