Category Archives: MS and Holidays

Holiday Heart Madness

A post Valentine MS post

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

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

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

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

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

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

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

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

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

Is that wrong?

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

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

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

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

And what’s the latest rule on Going Dutch?

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

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

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

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

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

And you may be right.

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

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

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

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

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

I don’t think Steve Harvey thinks it is.

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

What do my single MS friends think about that?

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

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

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

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

PPS- Happy Black History Month!

PPPS-Happy President’s Day!

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Another Christmas? Another 12 Days of Christmas, MS Style

 A multiple sclerosis Christmas carolID-100108779

I love Christmas.

I love Christmas songs.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let’s sing it together, shall we?ID-10028320

NOT!

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

And for my non- Christian friends, may you have a healthy and happy season of all things good and not MS related!ID-100277785

PS- the girls in the Christmas hats aren’t me although I do own one and it does look pretty cute on me if I do say so myself.

The singing sisters aren’t me either….

 

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Talking Turkey on Turkey Day

A multiple sclerosis Thanksgiving post

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“Over the meadow and through the woods to grandmother’s house we go…”  Lydia Maria Child

In my world the song goes something like this-

“Over the bridge and around the city to my cousin’s house we go…”

And by “we,” I mean multiple sclerosis and I.

Yes, I am traveling this turkey day and am looking forward to it.  I’m going to my cousin’s house where he and his lovely girlfriend host a bunch of us crazy deSousa’s.ID-100187955

Unfortunately, as our family grows, not every member will be able to join us.  And this past year we had to say goodbye to our patriarch and so the holiday will include some sadness and memories.

But still, we are a loud, fun, wild lot.

And we span every age decade from only a few months old to somewhere in the eighties.  I’m relieved to report that I fall in the middle age wise which is a good place to be.  I’m young at heart but old enough to get away with being crotchety and persnickety.

Of course, multiple sclerosis is coming with me.  This damn beast is way too clingy- it insists on coming with me everywhere!

Since it will be a long day, my MS meds are coming with me as well.   There are the achy body meds, the moody mood swing meds, the obnoxious bladder meds, the “I really need an energy boost” meds- also known as legal speed and the “I’m so freaking tired but can’t fall asleep” meds.   They will all be in attendance.

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But MS or not, meds are not enough to bring to a holiday party; unless they are good meds of course.

What to bring to a family holiday dinner gets a little tricky for me due to an innocent little incident that happened several Thanksgivings ago.  Flash back over 15 years when I made a gorgeous apple pie for this same holiday.

I had made it before and it was delicious.  And I really made it too- no heating up a Mrs. Smith’s for me.  I peeled, cored and sliced apples and made a yummy crumb topping.  I might have cheated on the crust but still, this was a good pie, baked with love.

Problem was, on the two hour drive on that super cold day I put my pie in the trunk of my car which allowed the topping to freeze and then harden to rock hard proportions.  The topping was so hard that my cousin refused to serve it, afraid that one of his guests might sue him if they broke their teeth on it.

Dental bills are expensive.

I said he was overreacting and he pointed out that he couldn’t even cut into my pie to serve it.  To prove his point, he even tried cutting it with a chain saw, to no avail.eddiechainsaw0002

Since that day, he has refused to allow me to cook anything, even boxed macaroni and cheese which I have mastered.  Apparently, that is not an appropriate Thanksgiving side dish although I will be sitting with a six year old at this dinner who would disagree.

So what does one super exhausted relative bring to a holiday celebration where they are not allowed to cook?  I am bringing a box of chocolates and a bottle of Portuguese wine.  (Who am I kidding?  The wine is for me.  Come to think of it, the chocolate is too.)

What would you bring my friends?

Here’s what I decided.  I am also bringing a Star Wars floor puzzle and a holiday version of the Memory game- hopefully, if I remember to pack it.

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I know these are not the normal Thanksgiving accompaniments but I thought it over and decided perhaps the best gift I can give my hosts is to stay out of their way in the kitchen.  My MS, glass of wine and I can find a quiet corner where I can keep busy by visiting all the relatives, holding the new baby in the family and hanging out with the young ones by completing a puzzle and playing some friendly yet serious Memory competitions- holiday style.

Maybe these gifts will help keep the young ones out of the kitchen and hence, I think I am bringing the best gift of all.  Not just my charm and sweetness but my ability to sit and stay out of the way.  MS and I have gotten very good at that.

As long as I have my meds!ID-100260170

As you know my friends my blogs are tongue in cheek.  And while the pie story is true and my cousin is serious about my not cooking due to the pie story, I am really excited to see him, his lovely girlfriend who is an amazing cook, and the rest of my family.  And in this holiday of celebrating being grateful I am grateful for them and for lots of other things too; God, all my family, all my friends, living where I do, the Rolling Stones, classic rock in general, the Boston Bruins and many, many other things. 

I am also super, super grateful to you my readers and wanted to give you a gift of thanks as well this holiday.  Since I can’t even begin to think about bringing each of you pies that may or may not break your teeth, I thought I would close with some bad holiday jokes for you to share with your family. 

Advice-they may work better if you share them after your family has entered into a turkey/potato/dessert coma-like state and are only half paying attention anyway.ID-100253345

Why did they let the turkey join the band?  Because he had drumsticks

Why can’t you take a turkey to church?  Because they use FOWL language

If the pilgrims were alive today, what would they be famous for?  Their age

What kind of music did the pilgrims like?  Plymouth rock

What do you get if you cross a turkey with an evil spirit?  A poultrygeist

What is a pumpkins favorite sport?  Squash

What happened when the turkey got into a fight?  He got the stuffing knocked out of him

What smells best at Thanksgiving dinner?  Your nose

Which side of the turkey has the most feathers?  The outside

What did the turkey say before it was roasted? Wow, I’m stuffed

And if these stuffy (stuffy-get it?) jokes don’t help you through the holiday then you can amaze your family with this factual but little known Pilgrim trivia that everyone should know but doesn’t.  The Pilgrims did not land in Plymouth first.  They stopped in Provincetown, MA and hung out there for a bit before venturing on to Plymouth which they could see across the bay.

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Don’t believe me?  What do you think the Pilgrim Monument in Provincetown is for???  Like modern day settlers, everyone likes to visit Provincetown but only hearty souls grow up there!kp beach

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Happy Thanksgiving my friends!

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Jokes courtesy of jokes4us.com and ibtimes.com

Provincetown photos by Provincetown settler Kristin Perry

Picture of my cousin with the chainsaw courtesy of the train wreck that is my old photo album

Other images in order of appearance-

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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.

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.

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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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12 Days of Christmas, MS Style

A multiple sclerosis Christmas carol

 

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

I love Christmas.

I love Christmas songs.

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

 

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

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

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

 

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

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

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

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

 

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

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

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

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

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

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

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

 

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

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

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

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

 

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

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

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

Let’s sing it together, shall we?

NOT!

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

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

 

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

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

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

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

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

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

 

Two Years Later- Still December Dates

An MS’er looks at the calendar

 

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

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

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

 

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

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

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

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

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

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

 

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

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

 

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

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

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

 

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

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

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

 

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

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

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

 

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

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

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

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

 

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

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

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

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

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

 

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

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A Few of My Favorite Things

A multiple sclerosis Thanksgiving post

 

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

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

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

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

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

 

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

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

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

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

 

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

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

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

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

I still HATE doing them though.

 

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

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

 

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

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

 

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

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

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

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

 

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

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

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

A Happy and Healthy Thanksgiving to all!

 

Scary Brain, Scary Movie

A multiple sclerosis movie mash

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So for Halloween fun, I thought I would repost one of the first blogs I ever wrote; a blog that my readers call a classic. 

Happy Halloween friends!

 

It’s the afternoon and I’m shuffling around my house, trying to focus.

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

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

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

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

But the lists and lists were not helping me focus.

Oh, I know, the dishes need to be done. I will feel better when I have finished that.

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So I start with the dishes and realize I might have more motivation if I had music going.

I dry my hands and head to the stereo. But then I see my computer and try to remember if I responded to that important email I received this morning. Yes, I see now that I did but there are some more emails to read.

I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead.

 

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

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

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

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus.

I’m forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.

 

Figures. Leave it to me to equate my multiple sclerosis to a horror movie.

But is The Fog the right horror movie? I am wandering around lost in my own little world and not feeling quite right- almost zombie like. Yes, zombies, zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it is not The Fog but Night of the Living Dead.

 

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

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

 

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

I remember too all the hysterical mood swings and weird symptoms I experienced before I knew I had MS. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.

I remember all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

 

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

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

Yes, Psycho is the movie. That is the one that most describes my MS. And it’s appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time.

 

My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging. Yes, Psycho felt right.

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

That’s it, Invasion of the Body Snatchers. That is definitely the horror movie that best describes my MS.

 

It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

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

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun.

 

Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your multiple sclerosis was a horror movie which horror movie would it be???????

 

Bicentennial Babe Needs a Rest

Multiple sclerosis meets two forces of nature named Arthur

 

I was fortunate to grow up in a beautiful, quirky, fun town that managed to be a fishing port and a gay resort; an artist colony and a tourist destination.  I can’t imagine growing up anywhere more interesting than Provincetown in the 70’s.

Hanging out on the main street filled with shops, beaches, ice cream parlors, restaurants, bars, and the best people watching imaginable was its own celebration.   But we townies were not content to settle for the usual holidays; we had to create our own to kick off the summer season in a big way.

In honor of our fishing heritage, the last Sunday in June was the blessing of the fishing fleet by the local bishop.   Since most of the fishing families came from Portugal, linguica, wine, dancing and Portuguese flags filled the area.  The days leading up to the blessing consisted of party after party culminating with the main party on that Sunday.

 

This day also kicked off the swimming season.  It didn’t matter if May had been a record filled, month long heat wave or if the Blessing of the Fleet fell during a hurricane.  That Sunday was the first day your parents let you in the water- usually by pushing you off the bow of the fishing boat near where they were grilling sardines…

We would have barely settled ourselves when the Fourth of July rolled around.  As much as we loved Portugal, we loved America more and so even more parties ensued.   Parades, fireworks, barbecues and all things Americana were part of the second summer holiday.

Still hopped up on Portuguese sweet bread, I got myself ready for apple pie.   And I wonder now where my sweet tooth comes from.

 

Our town was so quirky that my middle class family lived next door to a world famous nightclub performer known as Arthur Blake.  I guess some would call him a drag queen but he preferred the term impressionist and people came from all over to see his show.  I just knew him as the guy next door with the two little dogs.

 

This was how fun my life was when 1976 arrived and my town was to celebrate the Bicentennial.  Mr. Blake had trunk loads of accessories for his shows and so he gifted my sisters and I with hats, pins, and boas all red, white and blue.

As one of the floats with a rock band on it passed by, the super cute lead singer looked at my dressed up self and said, “Now there’s a real bicentennial babe!”

Yes, that was me, a bicentennial babe ready for fun and celebrating and loudness and energy and whatever else it took to properly celebrate something as big as the country where my family came from and the country of my birth.

 

The only problem with all of this was my grandmother, who lived next to us.  Her house and yard were even closer to the beach and the main street where all the action was, yet she had no interest in all of this excitement.   She could watch all the festivities from a lawn chair inside her own gate yet we had to push her to do so.

Why wouldn’t she want to take part? After all, she had me, her adorably sweet, perfect granddaughter to help her celebrate.  She also had my sisters and my cousins too I suppose, but they weren’t as cute.  Yet, for some reason, she would complain about the heat or the noise or the crowds or the lateness of the hour of the fireworks.  I couldn’t figure out what was wrong with her!!

 

Fast forward many, many years, like almost 40.  My poor grandmother is gone, as is my neighbor with the cool stuff, Arthur Blake.   The Blessing of the Fleet celebration has turned into a four day extravaganza called the Portuguese festival with even more food, more music, more people and more flags.

And I am no longer an adorable kid excited for the events that kick off an awesome summer.  I am a woman with MS who is suddenly very, very tired and is having a hard time deciding between standing directly under the hot sun on the comparatively quiet sidewalk verses sitting in the shade under the super noisy tent.

I don’t know what to do, which would be easier for me.  I decide to have a glass of Portuguese wine to try to figure it out but with the very first sip I start to sweat profusely.  I consider a walk on the beach to cool off but suddenly the beach seems very far away.

 

Plus, if I get myself covered in salt water I will need to shower when I get home and I absolutely cannot figure out where I will get the energy for a second shower today.

The normally pleasant music is gnawing on my brain and seeing friends means standing in one place to talk to them which is making my legs ache beyond belief.   And now just watching the dancers is making my feet start to hurt too.  The parade is still hours away.

 

When did this stop being fun?  Oh I know, a nasty life change having something to do with multiple sclerosis might be part of the problem.

But I did all the MS things I am supposed to do before exerting myself.

I balanced and balanced and balanced some more.

I kept hydrated and wore cool clothing.

I actually used my handicapped parking placard and not just to save money this time but to actually be closer to the event.  (Our town offers the disabled cheaper parking rates.)

Yet I don’t remember being this tired and this miserable during this very same weekend of my childhood.

 

True, I’m sure depression over Portugal being booted out of the soccer world cup tournament didn’t help but still…..

I manage best as I can but take it easy on the day of the actual blessing.

And I try not to berate myself too much when thinking about the very next weekend when I will be celebrating America.   Strange that taking a pass on that parade does not seem like such a bad idea.   Even if I am able to drag a beach chair to the parade route and sit down while watching, the heat and humidity that will surround me don’t seem worth it.

And the fireworks, well, suddenly my pj’s and a repeat Shark Tank seem like fun too.

I realized I had become my grandmother.  And I didn’t even have a cute little version of me to try to help me find some energy for the 4th.   I worried that if I didn’t participate in the activities I would be a bad American, especially since I had done my best to grin and bear it through the Portuguese celebration.

As I stressed about this a couple of enlightening things happened.  First, the USA was also booted out of the World Cup.  My two favorite countries both out and hockey season still months away?  No wonder I felt deflated.

 

Then the news people started to talk about Tropical Storm Arthur.  Not my old neighbor Arthur Blake who was his own force to be reckoned with when he was on stage, but a real storm named Arthur.

With the communities monitoring storm Arthur, holiday plans shifted and changed and I couldn’t keep up.  I didn’t wish for Arthur, the storm, but I took his presence to mean that if I miss the festivities, it doesn’t mean I don’t love America.  It only means I love America enough to have the freedom to do what I want on this 4th of July.

 

Maybe my grandmother was right all along.  Maybe she just loved her country enough to know she didn’t have to be pressured into having fun, even if that pressure came from her overly dressed up granddaughter.

And if it’s pressure, maybe it’s not so much fun.

And if you are free, then you are free to be boring, although I don’t recommend it on a regular basis.

So, however you choose to celebrate America, with Arthur or without, Happy Independence Day friends!!!

 

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

Don’t forget to pick up a copy of MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis for some laughter filled summer reading.     While I might still be resting up from one holiday and not quite recovered in time for a second, I will always have time for a good giggle or two…