Lies, Lies, Lies, Yeah-Re-release

A now old, but new MS symptom

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

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

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

Thank you friends- you guys rock!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Oh yes please, I can’t wait.”

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

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

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

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

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

“I did!  It was a blast!”

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

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

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

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

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

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

Sometimes multiple sclerosis has a way of working itself out.

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

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

Happy Fourth of July dear friends!!!

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FYI for 6/26/15 Post

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Hi friends- 

Due to computer issues I may not be posting a blog this week.   I will be back at blogging as soon as I get this issue resolved.

Enjoy the rest of June my friends…

Yvonne

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Crasher

A new multiple sclerosis mode of being

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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.

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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 McFox.com) 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 HealthyWomen.org 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 MerckManuals.com 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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The Not So Golden, Slightly Tarnished Girls

Multiple Sclerosis is no match for a birthdayID-100183604

The story starts like this.  Three besties gather at the home of a fourth to help her celebrate her birthday.  The friends are the serious Gidget, the shy Amber, and the wild child Traci.

******Note-names have been changed in this writing to protect the ages and the humiliation of the participants********

The birthday girl was thrilled because her little brother called to wish her a happy 26th birthday,

The girl thought she was actually much older but since her brother is smarter than her and doesn’t have her MS related cognitive difficulties, she decided he must be right.  So there she was with her friends, celebrating a birthday that happened to fall on a weekend.

Ok, this third person writing is confusing me and since it doesn’t take much to really confuse me, I will just tell you that I am the birthday girl I am talking about.  And yes, according to my brother, I turned 26.

I don’t usually make such a big deal out of my birthday but since it fell on a Saturday, I felt I needed to do something to celebrate.  Watching marathon reruns of the original Law and Order episodes didn’t seem to cut it.ID-100256550Luckily, some of my friends happened to be available.

If I’m only 26, how can it be that I got lightheaded after drinking one glass of wine? What’s wrong with me?  It took me an entire five minutes to sip that glass- I shouldn’t have been lightheaded that quickly!

Things went pleasantly downhill from there.

We spent the first part of the evening recalling the times when we were younger, cuter, smarter, dumber and way less tired.

Yes I do know that smarter and dumber mean opposite things and so putting them together in this previous sentence doesn’t make any sense.  Allow me to explain it this way-back in time my friends and I were smart enough to figure out how to do the dumb stuff we did and even smarter at knowing how to get away with it.ID-100315351

Sharing stories reminded me of Bruce Springsteen’s hit, Glory Days.  Especially the line that says, “I hope when I get older I don’t sit around thinking about them, but I probably will” and the other line that says, “she says when she feels like crying she starts laughing thinking about Glory Days.”

Personally, I think it is ok to reminisce in this way, especially for my friends and me.   With my multiple sclerosis brain, who knows how long I’m going to have these memories.  As for my friends, cognitively speaking they are fine.

BUT, they ARE old.  Who knows how much longer they will remember these stories themselves.  I could write them down but that just seems exhausting.

As we cherished how much we used to love to go out, we talked about how glad we were that we weren’t actually going out.  The crowds, the drunks, the foolishness, it was all just too much.  It was then that we decided to get drunk and foolish.

It started with the game Scattergories.ID-100143404

Problem 1 occurred when Traci and I couldn’t read the game sheets.  Amber and Gidget have always worn glasses and even though Gidget was fretting about her ophthalmologist’s suggestion that she get bifocals, she and Amber could see fine.

But I had to pull out my cheaters and I was not happy about it.  Since poor Traci had refused to progress to cheaters, she could not see a thing either.  I found the lighted magnifying glass that I insisted was all I needed to read before I broke down and bought the cheaters and gave it to Traci.

With all of us ready with our assisted vision devices, we then encountered problem 2.  We tried to set the game timer only to discover that it was broken.  This was unacceptable on my birthday and so I did the practical thing and banged it several times against my kitchen table.ID-100166384

When that didn’t work, Gidget downloaded a timer on her phone and we began to play.  Thing was, we couldn’t remember how long we were supposed to set the timer for and so with each round we played, we gave ourselves more time.  By the end of the game I think we were giving ourselves 20 minutes for each round; not that all that extra time helped us any.

We had some classic game moments when we had to find answers beginning with the letter G. Traci came up with Things You Replace-Guys.

Imagine my shock when the normally reserved Gidget answered the part of the body question with a female part that rhymes with C-dot (she had to be channeling Traci to come up with that one,) and my horror when Amber (as big a Rolling Stones fan as I am) couldn’t come up with Gimmie Shelter on song titles, even as I hummed it.

Plus, I think it was playing on the stereo at the time!

What’s happened to us??

Wine, giggles and munchies ensued and as we got even tipsier we moved onto Traci’s favorite game, the hilarious, R/Xrated, adults only, not for the faint of heart Cards Against Humanity.

And it was fun; silly, pointless, crazy fun.ID-10054121

So what if we weren’t out on the town dancing in our highest heels?

(I don’t think I managed heels even in my best “no balance worries” days.)

And so what if Traci and Amber had kids they had to get up and feed first thing the next morning?

And so what if Gidget had to get ready for a crazy work week and her hangover wasn’t going to help her any?

And so what if this birthday fun lead to me falling into a two day attack of the zombie/super blah mode of multiple sclerosis, starting the very next morning?

Fun is fun.  And you’ve got to try to find it whenever you can, even if you need a weekend birthday as an excuse.ID-100207768

This thought leads me to another lyric of another song that I chose to adapt for the situation-

It’s my party and I’ll laugh if I want to,

Laugh if I want to

You should laugh too when the tears won’t do

Do, do, do, do, do!

My friends wouldn’t dare take a picture of me feasting on my birthday sweets but if you need an actual image, it looked something like this-

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Poor Gidget got stuck taking the pictures but here is one of some of our birthday fun.  Guess which one is the friend known as Traci..

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Want a helpful tip combined with some shameless self-promotion?

Here it goes-

If you need a birthday present for someone then give them the gift of humor, shared as only I can do it!

MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis is guaranteed to make all readers giggle through whatever ails them!

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Don’t believe me?

Then please check out some of the awesome reviews on Amazon!!

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Gag Me with an MS Spoon

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

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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.

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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.

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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.

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(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.)

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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.

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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

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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.

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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.

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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.

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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.

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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.

Maybe…

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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Keep Using Your “I” Words, Baby!

A Multiple Sclerosis VOCABULARY

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I had three ideas for a new blog this week.  Unfortunately, I also had a very dirty house.  Being a germ-a-phobe, the dirty house won.  

So I’m posting an oldie.  In honor of World MS Day next week, I wanted to post a favorite. (More on World MS Day at the end of this post.)  This blog is such a favorite of mine that I sent it to the editors of Something on our Minds Volume II where it was published.  

I hope you find it helpful my friends……

Some people say that good things come from bad.

Many others say that is crap.

I’m not about to earnestly debate this argument as my brain is just too fatigued to give it much thought.  But I will honestly say that one thing good that arose from my multiple sclerosis diagnosis was the increase of helpful vocabulary words beginning with the letter “I.”ID-10058081

Before MS, if someone were to ask me to quickly name a word that starts with the letter “I,” I would have to think for a few seconds.  Then I would say “Indian” which is no longer politically correct, and since Native American doesn’t start with the letter “I,” would be wrong anyway.

If I was given more time I might come up with igloo or iceberg, maybe iguana, but I would really have to think for a bit.  Pretty sad since I was an English major in college.ID-10049794But since MS, I know many words that begin with the letter “I” and some are actually helpful in my MS world.

I don’t mean “injection” which is technically helpful in a healthy way but is definitely not helpful in a real life way.

Nor do I mean “interferon” which I had never heard of before MS, and do not know what it means, but know that it is printed on my box of “injections” right over the words “Chinese hamster ovary cells.”

Nor do I mean “infusion” which I am sure I had heard of before MS but never really thought too much about.ID-10063511

The “I” words that have been added to my post diagnosis lexicon and which are truly accommodating are “ish” “ing” and “icth.”

Let’s start with my favorite-“ish.”

I love “ish.”

“Ish” rocks my world and absolves the normally precise me from all responsibility.

“I’ll be there around 9ish,” can actually mean, “no I won’t, but I’ll give it a good try.”ID-10019322

Or, “I have no idea what time I will get there and cannot even begin to try to rationalize how my morning will proceed and how fast I might be moving, but I will roughly aim for some time around 9 in our particular time zone.”

On a stretch it can even mean, “We didn’t state a specific time, did we?”

The reason why “ish” is so good is because not only are you not committing yourself in any way, the ishness of “ish” can be broken down by several factors.

My view of “ish” is not your view of “ish” and 9ish can be anything from 7 to 11 and there is nothing anyone can do about it!

It doesn’t just work on time either.   When someone asks my age, “30ish” or “how often do you exercise, “often, I try to exercise once or twice a week, ish.”

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Do you see the beauty of “ish?”  I never appreciated it until my diagnosis but I am thrilled to have “ish” to help me out.

“Ing” is great to use when I try to describe symptoms that are totally indescribable.

My ears are making this “ringing,” “buzzing,” or “clopping” sound.

My fingers are “aching,” tingling,” and “vibrating” all the “freaking” time.

My foot is “dropping,” my legs are “weakening” my head is “pounding,” my brain is “fogging,” my eyes are “blurring,” my skin is “itching,” my stomach is “twisting” and my bladder won’t stop “going.”

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“Ing” doesn’t let me off the hook as much as “ish” but it sure makes it easier to explain what is going on in my body even when I have no clue what that is.

But if I’m really too tired to come up with an appropriate “ing” word or there are just too many too sort out, then the best word is “icth.”  “Icth” just sums it all up.

Some days, you are just not with it and MS is doing its best to do you in.   Well meaning people may say to you “well, tell me, specifically, how do you feel?”  Sometimes you just don’t have the specific words they need to understand.  So I just say I feel “icth.”

It’s important to let out a little breath when you say you feel “icth.”  If you are not sure about “icth,” then please allow me to tell you it is the next step up from “ick.”

Anybody can feel “ick.”  But when “ick” is not encompassing enough of your overall ickiness then you must use the word “icth.”  “Icth” is “ick” times twenty.

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Not only does “icth” describe your ickiness combined with all your other symptoms combined with your overall exhaustion, it also says “stop asking me how I feel because I don’t have energy to explain it to you!”

MS friends, far too many times, “icth” is my favorite word.

May you not have to say “icth” too often.

But if you do, then I’m glad “icth” is available for you too.

Friends, World MS Day is 5/27/15!  This is a day where MS’ers from all over the world come together to share our struggles, our symptoms, our strengths, and our stories.  It’s a day for all the way over 2 million of us.

Don’t know what you should do on this day?  Well check out the World MS Day link for ideas.

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Yeah, MS, Woo!

Multiple Sclerosis goes dancing

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The Rolling Stones were coming to town!!!!  Yes, THE Rolling Stones, right to my little corner of the world!

Ok, if you insist on being specific, it was not my town but the town right next door to my town.   The town that I could drive to in less than 10 minutes.  How much more exciting can things get?

Please allow me to digress slightly.

Previously I blogged about how I am not a fan of spring (Chop Their Happy Little Heads Off.)  True, I do not like the bugs, pollen, noises, crowds, heat and humidity that comes with spring and thus why I claim I do not like the season as a whole.

Recently however, I discovered (without even shelling out a dime for therapy) a secret, darker reason why I don’t like spring.  Turns out, it’s a sad, emotional reason.

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Here it goes- in my younger, exciting, party days, spring was the official start of the party season.  My friends and I would begin to venture out of our tiny, crappy apartments and gear up for beach parties, dive bar parties, wedding parties, patio parties, house parties and any other party we could come up with.

One friend lived on a farm and staged a three day “Welcome to Spring” party each year.  You could stumble home and come back during the three days or pass out in the hay next to the chickens- your choice.  But the party was on!

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Memorial Day was actually called “Memorial Day” as it was always an event just trying to remember how you spent it.  If you had a memory of the party that weekend, than you were memorable indeed.

But whether from multiple sclerosis fatigue or the scary aging process, these days, I prefer the cocoon of cold weather in the winter and the anticipation and stocking up for the cocoon in autumn.  Spring comes and I have no excuse to hide.  And since my energy is zapped and I no longer have the party spirit, I feel like I’m missing out.

Somewhere around me is a cute 21 year old girl with a future, sitting by a bonfire and flirting with guys just a little wild.   That girl is not me.  If she were me, she would actually be holed up on her sofa with an iced tea and a good book, doing her best not to fall into a nap that will disrupt her sleep cycle for days.

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But she used to be me and when spring arrives I feel like I am missing something.  And when I can’t FIND what I’m missing then I start to REMEMBER what I’m missing and it just makes me feel old.

So, when my Rolling Stones fairy godmother sent me a text to tell me that the next day the Stones would be appearing in the little town next to ours, I couldn’t say no.  Suddenly, since it was late April, the air of excitement hit and I looked forward to getting out.  I was going to party and see the Stones and maybe this year I would be young and fun once again.

It didn’t matter that the Stones were appearing in a concert DVD, Shine a Light, at a local hall as a fundraiser for a radio station- it was the Stones in my very own neighborhood.

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It didn’t matter that my fairy godmother and I would each pay $10 to see this DVD at this hall when we each had the same DVD at home and had watched it several times before.

And it didn’t matter that we would pay $7 for a small glass of wine when we each had plenty of bottles of wine at home.  We were getting out!  We were being social!  It was the Rolling Stones!

We reasoned that as this town was the source of many of our parties, we would likely see some old party friends at this event.  And since I was getting so caught up in the spring air I even started to wonder if maybe I would meet some cute male Stones fan I never knew existed.  It was spring and the possibilities were endless!

We donned our concert t-shirts and rock buttons and headed out.  We arrived early and sat in my car for a bit, where we watched old people, like really old, like mid-sixties and stuff, venture into the hall.

Where were they going?  They couldn’t be going to the airing of the Stones DVD- they were too old.   My friend and I knew better.

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Like we knew how wrong the DJ was when he teased some of those old folks about how Mick Jagger himself might show up.  What an idiot.  Everyone knows that it’s Keith who actually shows up to these things. Maybe Ronnie if he happened to be in the neighborhood but definitely not Mick.

We got our overpriced cheap wine in the plastic cups and headed in.   And everyone WAS older than us!  Everyone except the venue manager who kept calling the concert film and others like it “vintage.”

What the hell does “vintage” mean?  I thought it referred to wine that actually tasted like it cost $7 which our wine did not.

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As for the male Stones fan I would fall madly in love with? He was there alright.  My age approximately, kind of handsome but standing in the back by himself and not at all friendly.  All of that would be ok if he stood in the back so he could dance.  BUT HE DIDN’T!!!

In fact, NOBODY DID!

It was killing my friend and I.    We clapped and yelled and chair danced through the whole first half and then Tumbling Dice came on and we couldn’t help ourselves.  We danced. As the saying goes, “we danced like no one was watching” which was not the case as since we were the only ones, everyone was watching.  We didn’t care.

I tried to ignore the fact that we had to sit down right after that song. What happened to the days when we just HAD to dance through the whole concert?

The real surprise came when the Stones played Brown Sugar.  It was then that I realized my friend and I were in an alternate universe.  Nobody moved.  You have to be in a coma to not dance to Brown Sugar.

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I was at a live show once and a guy was taken out on a stretcher after a brutal fight with the very drunk biker behind him.  Even as the blood was spurting from his multiple injuries, the guy was waving his arms along with the “I say yeah, yeah, yeah, woo” lyrics he was hearing.

At this hall near my hometown, I was dancing.

My friend was dancing.

But the young manager who called the film “vintage” was not.

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The kind of cute, rude guy was not.

The other members of the audience who may have technically been closer in age to Mick and Keith than I was, were not.

It didn’t matter that they politely clapped after each song.  How could they possibly be appreciating the music if it wasn’t giving them the energy to move?

The Stones had even played Start Me Up and again, nothing.

It was then that I realized something important.

This knowledge is crucial.

It may even reverse aging or even, maybe, just maybe, cure multiple sclerosis.

The lesson is this-

No matter how old you are or how tired you are or how weak you are, you can still rock life and have fun.

You just have to appreciate the Rolling Stones to do so…..

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Not Just About the Cupcakes

A multiple sclerosis statement

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There’s a new hero in my MS world.

He gets me.

And he gets away with saying things I want to say.

I learned a long time ago that heroes don’t always come with a cape. And sometimes they may even be con artists.

Life is too short and so if you find a hero, treasure him.

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Or her.

Speaking of short, my new hero is very short.  His name is Mateo and he is three years old.  He’s the “‘Linda listen’ cupcake kid.”

If you don’t know what I’m talking about and have access to YouTube do yourself a favor and do a YouTube search with the words “Linda, listen.”   You will find an awesome video of Mateo pleading his innocence to a judge, his mom.

The Crime- Mateo is accused of conning his grandmother into letting him have cupcakes specifically after his mother told him he was not allowed to have cupcakes.

The Defense-Mateo is pleading not guilty as since the alleged crime took place in his grandmother’s house, his mother’s law does not have jurisdiction.

The Sentence- If convicted, Mateo will face a pow pow on his butt.

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Some of you are probably parents who will insist that children should not argue with their parents or that a pow pow on the butt is not a proper punishment.   I’m not a parent so I’m not going to weigh in on those issues.  I will point out however, that when one of my nephews misbehaves a “simple time” out usually works pretty well.

Oh who am I kidding? My nephews are perfect.  They never misbehave.

These issues aside, Mateo is probably one of the best lawyers I have ever met and I used to work with a ton of them.  Really, Harvard should give him a teaching job.

And while I have on several occasions been guilty of eating cupcakes I knew I wasn’t supposed to, that is not why Mateo is my hero. He is my hero because he says outright, loud and clear, over and over, “LISTEN TO ME!”

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Haven’t you ever wanted to say that to those around you?  For me, it’s happening more and more, the longer I live with MS in my life.  And I’m not talking about the naysayers in the world, those that judge you and it doesn’t really matter if they listen to you or not: their ears will never hear you no matter what you say.

No, I’m talking about the people closest to us, those who really want to help.

And I love them- I truly and deeply do.  Mateo clearly loves his mother.  You can tell as even though he is calling her ‘Linda,” he also calls her “honey.”  I believe he does this so she knows his frustration has no bearing on how much he loves her.

But despite that love, he wants, no he needs, to be heard!

Likely you know what I am talking about.

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From an MS standpoint, one example may look something like this; someone asks you how you are feeling and you tell them.   And then they ask why you feel that way.  When you can’t tell them why they come up with non-MS reasons likely, to try to make you feel better about having MS.

But it doesn’t help to hear, “you do too much, you don’t do enough, you sleep too much, you don’t sleep enough, you need to rest more, you need to get out more, you need to fight more, you need to give in some…..”

It doesn’t help because we already know all this!!!!  We are constantly, daily, hourly, minutely (I don’t care if that’s not a real word- it should be,) trying to balance all this out ourselves.  And we have told you this a million times before.

“Linda, honey, listen to me!”

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Then there are the times you describe your symptoms and someone replies, “oh, don’t feel bad.  I do that all the time. If that’s MS then I’ve got it too, haha.”  Not that helpful.  Especially since what you just described is nothing like what I’ve described and I’ve described doing it constantly-daily, hourly, minutely (I really like this word.)

Then there’s “please let me know what I can do to help” and you think “awesome, great, fabulous.”  And when you say what would be helpful, say for example, A. B, C, or D,  you likely get B squared or E, F, and G in return,  And it’s really a bummer if G requires you to do  H, I , J and K just to make G work out for you.

Again, I and all the MS folks I know are super duper grateful for offers to help.   We just honestly appreciate help that looks like A, B, C and D.   As Mateo says, “you’re not listening to me!!”

Finally there’s us wanting to help someone else.  Our life has changed drastically with MS and while the changes may not be what we hoped, we still have lots and lots to offer.  So please, please, please believe us when we say “I can help by doing A, B, or C.  Will that help?  If so, I would be happy to do it.”

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But too often the person who needs the help responds “oh no, A, B, and C are way too much for you.  I will ask someone else to do that.   If you could just do D, that would be great.  D will be much easier on you.”  Despite after you have already explained why D would actually be too much for you.

At no time do I ever want to seem ungrateful.  That is why Mateo is my hero.   He makes his case in his adorable way and his mom hears him and is not offended.

It probably helps that Mateo is super cute, though technically that should not be relevant.  I just can’t help myself from admiring Mateo’s outright plea. Knowing that I would never be seen as cute if I was to boldly state “Listen to me,” I can feel better channeling my inner Mateo when necessary.

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But this isn’t the only reason why Mateo is my hero.  He’s also my hero because his argument got him on Ellen!

I’ve been trying to get on Ellen for years now and Mateo raised an argument and got on Ellen.

Just like that!

All he had to do was smile and give her a hug.  I could do that.  I may not be as cute as Mateo but I could flash a big smile and give Ellen a hug.

And if all that weren’t enough, Ellen gave Mateo his own private super hero tower of cupcakes!

And so, I’ll say it again.

“Listen, listen Mateo, honey, you’re my hero!”

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Happy Mother’s Day to my own Mom and to all the Moms out there…..

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No Curtains for You

A multiple sclerosis shopping escapade

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We were going on a road trip, my mom, our friend Annmarie and I.  The goal was curtains.  I didn’t need curtains.  I probably needed to wash the curtains I had, but I had curtains.  The ones in my kitchen and living room were left over from the previous tenant in my apartment and she was practically eighty.   The curtains are probably even older.  It’s okay; they dim the sun enough so you don’t really see all the dust.

But my mom needed curtains and had a specific type in mind-63 inches, rod pocket, valance attached, lined, no embroidery, no plain colors, no ruffles, one rod only, energy saving, light diffusing and vibrant without being too flashy.  How hard could that be?

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Our dear friend Annmarie is not only a shopping expert but actually likes curtains.  She’s one of those super sweet, super talented people who also have patience and believes that curtains are no big deal.  She Googled curtains and found some places for us to check out.

We headed away from our little town over a bridge and into a city where we would visit curtain experts.  No ordinary department stores on this venture.

The first place we checked out was a brand new building with no identifying signs of any kind.  It looked very modern but suspiciously so.   We couldn’t figure out what kind of place it was, yet it’s where Annmarie’s trusty GPS told us to go.   I went to check if they were open, although open for what I didn’t know.  They were.

On one side of the building was a fancy store where they sold bedding and bath items but no curtains.   The other side was a factory.  We were in a towel factory.  I didn’t even know towels came from a factory.  I just thought they sort of existed on their own.

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Before I reported this to my companions, I needed the restroom, of course, which turned out to be one of the cleanest and fanciest I have ever been in.  I kind of didn’t want to leave.  It was so classy that they didn’t have a hand dryer or a paper towel dispenser; you dried your hands with real towels.  I was so impressed I tried to get my mom to come in and use the restroom but she just had curtains on her mind and didn’t need any distractions.

Next, we ventured into the heart of the city.  We could tell it was the heart of the city due to the ton of construction details we had to detour through.  The GPS did not like this.  It kept stating “recalculating, recalculating,” and if you ask me, it had an attitude about it.

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But it did direct us to a very large, very old building that we circled several times before we saw the sign for the curtain store. Once inside there were no more signs; just a dark building and a creepy staircase.  At the top of the stairs we saw curtains so up we went.

There was a door marked showroom but it was locked.  There was another door marked office and so I opened it.  The door slammed behind me with a loud bang and I jumped.  Suddenly there appeared a young girl who offered to open the show room for us.  It seems we went from a brand new towel factory to an ancient curtain factory.  The city was an old mill city so this wasn’t surprising.  My mom and Annmarie picked out some curtains that might work but Annmarie was not the type of woman to settle for “might work.”

We set off again.  But already, my MS bladder was calling and not to be outdone, so was my stomach. All of our stomachs decided to join in the rumbling too.  We stopped at a lovely Portuguese restaurant and had a delicious lunch.  Fortified, we found store number three which looked quite pleasant, with several styles of curtains to choose from.  But I chose instead to go visit the bridal store across the street.

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No, I’m not finally getting married, at least not that I’m aware of.  I was just sick of looking at curtains.  Until I entered the store and realized that looking at bridesmaid dresses wasn’t much different from looking at curtains.  I left and met my party- store #3 didn’t carry what my mom was looking for.

Next the GPS sent us to what looked like a deserted industrial park.  The tall buildings were dreary with busted windows and were spooky to say the least.  After circling another several times we found a teeny, tiny sign with the word “curtain” in it.  I couldn’t help it- I had to ask.

“Mom, doesn’t Sears carry curtains?”

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Annmarie and I ventured in first.  This building was dustier and spookier than the previous old building we visited.  There seemed to be no signs of businesses or of life of any kind.  There was a dramatic, ancient looking stairway with the date of 1890 carved into the steps. It looked exhausting and with little hope of finding what we were looking for, I was ready to split.  Annmarie said “I’m just going to see what’s upstairs.”  I heard her say “oh, no, this isn’t right.  What’s a beautiful sofa doing amid all this junk in this creepy place?”

I was convinced we might be in a Stephen King movie.  I worried that if we were in a Stephen King movie and something horrible happened to Annmarie I would look like a jerk if I didn’t get chopped up with her.  Despite my aching legs, I ventured up.  And she was right- there was a lovely sofa outside a huge room filled with junk and a bizarre ghostly old man on a cell phone who told Annmarie that he didn’t know anything about curtains.

You know how in all those slasher films the obnoxious kids keep walking deeper into the scary woods even though they know there is a serial killer in the scary woods?  That was us.  Intrigued, and stupid, we climbed a second set of stairs.  At the top we found more long abandoned filthy rooms but still, we kept walking deeper into the woods.  I mean building.

Amid all the emptiness we eventually came upon a potter’s studio.  Suddenly, a woman wearing a paint specked apron materialized behind us.

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“Oh, you must be the potter,” Annmarie said cheerfully.

“I’m not the potter,” the woman responded. “I’m the girl who needs to pee.”

As we backed away Annmarie cautiously asked about curtains.  The woman/zombie/ghost said “next floor.”  So exhausted, with MS legs of lead but now hell bent on destruction and at least pretending to back up Annmarie, I followed her up the third flight of sinister looking stairs.

At the top- we finally saw them.  Curtains, beautiful curtains displayed artfully in a large, bright room.  Curtains perfect for my mom if we ever got out of this building and got her in.  Annmarie called out for help and another pale ghostly figure appeared.  Annmarie asked about prices and the woman mysteriously stated “we don’t sell curtains.”

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At that, it was all we could do to run down three flights to the safety of the car.  And of course Annmarie was faster.  In my horror movie scenario I would be the slow kid who trips, falls and gets cut up first.  Luckily though, I made it out.

We guessed that when Annmarie “Googled “curtains” she had stumbled upon the curtain factory showrooms of old- most of which were abandoned now as everyone buys things online.  And items bought online don’t come from a factory. They come from Amazon.  But the ghostly building we were now happily leaving, we had no idea what that one was.

Annmarie’s search had one last suggestion.  We followed the GPS voice as it lead us to an actual department store with a whole section on curtains, drapes, panels, valances, tie backs, rods, sashes and even towels.  My mom picked out curtains that “would work” as oppose to the “might work” ones and we left, mission finally accomplished.

On the ride home, my mom remarked that the next time we went shopping she needed to find a present for her three year old grandson and she knew just what to get him.  Annmarie said she would type the word “toys” into Goggle for the perfect present.

I just sighed….

Kidding aside, it was actually a fun adventure, even with a bad MS bladder and achy MS legs. Still, I’m insisting on Toys R Us for my nephew’s birthday!

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