Category Archives: MS and temperature sensitivity

No Summer Lovin

An MS dirge

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                                                  Summer lovin, had me a blast

(NOT!  Unless it was a nice big blast of cool air from my A/C)

Summer lovin, happened so fast

(Don’t I wish!   These days are dragging already and July’s not even here yet)

….Tell me more, tell me more

Well, since you asked….

(Italicized words are lyrics from “Summer Nights” from the musical Grease.)

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Vitamin D sparkling directly from the sun is supposed to do wonders for people living with MS.

(There’s a reason orange is the official MS color.  Well, that reason and the fact that all the other cool colors were taken by other important causes.)

Despite this, summer and I are not friends.

The fact that I don’t like summer (and really, really don’t like spring because it’s a long drawn out time where the rest of the world is getting ready for summer,) is unpopular.  For most people, July and August are their favorite months of the year.

Please allow me to state my case on why I disagree.

First of all, summer is hot. Only in the insanity that is life with a chronic illness would something that is ultimately good for you, (ie natural vitamin D,) also make you feel miserable.  And heat does make me miserable my friends, trust me.

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If you don’t believe me, ask the cute UPS driver who remarked what a nice afternoon it was when he dropped off my monthly meds.  My vicious reply so frightened him he hasn’t been back in days!

Of course, he’s not due back until next week but still, I was pretty scary that 78 degree day when he stopped by.

Then there are the bugs.  I try to stay out of their way, “you stay out of my house and I’ll stay inside and let you wreak havoc on my yard.”

But they refuse to cooperate and it’s hideous.

Earlier this month I went to a graduation party where everything was covered by these furry, disgusting caterpillars. I guess this is a prevalent year for them and we only have to wait for a bit and then these horrifically gross creatures will turn into gypsy moths- oh the joy.

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Not long after that I went to remove the change in my pocket and I felt something squishy.  I pulled my hand out and saw that the fingernail of my middle finger had impaled a small green bug that had managed to squeeze his way into my pocket.  The head part of it’s body was on one side of my fingernail and the rest of him on the other.  I’m still cringing about that little foray into the blissful days of summer.

And then there are the mornings where we should delight in waking up to cool breezes from windows left open all night.  That MIGHT be lovely except that this is also the time of year that people get yard work done. But, they also want to enjoy the beach and so the yard work must be done super early.

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Hence it was that the lovely sunny morning turned into a headache and then a body ache of ultimate proportions.  It was 6:45AM when my neighbor’s landscaping crew arrived.  Right outside my window one guy started the mower and the other guy started the weed wacker.

(Weed wacker would be a funny name if it’s screeching noise wasn’t so dreadfully painful to my super sensitive ears.)

Both guys had headphones.  I did not and the motor sounds pierced directly to my brain.

When the landscapers woke me up it was the middle of the night still. Due to my bladder issues I had only gotten five of my needed 10-12 hours of sleep and the day was expected to be a busy one.   I closed the window and covered my head with a pillow.  Right away it got hot and added additional misery. ID-100224548

I thought of calling the police as there must be an ordinance against that type of work so early but I worried about being THAT neighbor.  You know the one-Mrs. Kravitz from Bewitched or Mr. Roper from Three’s Company.  Or even Millie from my own childhood neighborhood; the cranky lady who kept all of our balls and Frisbees if they landed in her yard.

Of course I keep ear plugs for times of travel as airplane noise is also painful.  And of course I was out of them.  I tried cotton balls but they didn’t work.

The best solution was a brilliant one.  Turn on my A/C and that steady sound will help drown out the horrific racket outside as well as cool me off.  But since my head had already been affected so badly, I didn’t think up that idea until twenty minutes after the landscapers had finally stopped, over an hour later.

And just like that, my summer day sucked and was complete with pain in the brain, no thinking skills to speak of and just over all extreme fatigue-riddled, summer induced grouchiness.ID-100174457

All of the above just reinforces my dislike of the season. And it bothers me as I remember how much I enjoyed summers past.  It used to be that I could function on only a few hours of sleep, hit the beach, work at night, go out drinking with my friends and repeat it all the next day.

I miss that.

I miss the days when I wouldn’t dream of missing fireworks- bright colors in the sky with explosive sounds, cool!  Now I could care less.   And that just doesn’t feel so good.

Yes my friends, only a condition like multiple sclerosis can turn a fun song from a popular, campy musical into a ditty of misery.

Sure I could lament how the bad things of summer have started to beat me up in recent years and that is true.   But what I’m really struggling with is the mourning of fabulous summers past.

Even while I want to skip the fun invites I don’t want to skip them.  I feel guilty for skipping them, and get mad at myself over and over again.

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It’s a vicious cycle.

And so, with all things multiple sclerosis, I try to balance.

Maybe I’ll skip some invites but take part in others.

Maybe I’ll get extra strength bug spray and venture out once in a while.

I do live near lots of beaches- maybe I’ll go to one and cool off by jumping into the ocean, even if it means that is all I do that day.

I’ll weather (get it, weather,) these months as best as I can even if I do enjoy changing the lyrics to songs about summer and get irritable every once in a while.

Seems like that’s what MS is for….

But I’m definitely getting noise reduction ear muffs!

Happy Independence Day my friends! 

May you have a bug free, fun filled holiday!

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The MS Money Suck

Multiple Sclerosis gets spending

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Everyone knows that MS sucks.  You don’t need a degree to be able to figure that one out.  But, if you’re one of those science type people who need an official hypotheses I can back up this statement.

Hypothesis-MS sucks

Examination-MS patients complaining about sucky MS symptoms

Research-observation of MS patients dealing with sucky MS symptoms

Proof-MS sucks

Still not convinced?

Then there’s this; immediately after my MS diagnosis my then neurologist told me that, MS sucks. She had all kinds of fancy titles, degrees and med school debt to back her up.ID-100249751

And we don’t have to be an Ivy League grad to realize that living with MS is expensive.

Hell, living with any type of chronic illness is expensive.  Just thinking about words like insurance, pharmaceuticals, medical tests, therapy, copays, and sick time and even the cognitively slowest person (ie, dumb) starts to appreciate how costly it can all be.

Therefore we all know that MS and money clash in the poorest of poor ways.

I expected this upon my diagnosis and tried to start preparing and saving.  What did me in were the ways in which MS would leave me financially strapped that I couldn’t even anticipate.

For example, due to multiple sclerosis I am extremely temperature sensitive.  Extreme cold can be painful and extreme heat can make it hard for me to breathe.

If given a choice I prefer the extreme cold as rumor has it that breathing is pretty important.

My ideal living and sleeping temperature is 73 degrees.  And lucky for me, I live in New England and so there are several days in the year when my environment naturally drifts to 73 degrees.

Five of them, to be exact.

Yes, for 5 days a year I don’t have to worry about air conditioning or heat.

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Every other day I’m using some nasty utility company to heat things up or cool things down and as such, I’m watching good green cash blow out the a/c filled window or burn up in the fiery furnace.  Actually, to make the money suck even worse, I don’t have a furnace.  My heat is electric.  And yes, the electric company loves me, the stingy money grabbers.

Here are some other unexpected ways that multiple sclerosis is super expensive.

I have the most basic of basic cell phones- an actual flip phone.  Yes, they really do exist even if they are impossible to find.  They are officially the dinosaurs of technology and I have long been convinced that they are called flip phones because people like me are constantly flipping them somewhere.

I have accidentally flipped my phone across the room several times.

And dropped it on the ground.

And banged it against a wall, car or furniture.

One would think that replacing a boring, basic phone would be cheaper than replacing a fancy/schmancy updated one.

One would be wrong.

Very, very wrong..ID-10034354

Moving on-cognitive difficulties are also super expensive.

Here are two pricey examples.

Because I’m constantly flipping my flip phone I worry about replacing other pricey electronics as well. It’s not unlikely that I will drop my laptop and so I always get the insurance protection on it.

This past January I called my geeky friends at Geek Squad and wrote down all they told me about renewing this policy.  The first thing I had to do was respond to an email they would send me on a particular day.

On that day I received the email and looked at my notes to see what I needed to do at that point.  What I needed to do was renew the policy as my notes clearly stated.  What I did was delete the email, thinking it wasn’t important.  Later I realized that the policy was canceled and now my little old computer, also ancient at 6 years old, is alone in the world with no protection and clumsy me acting all dangerous around it. ID-10075806

We are just one unexpected trip away from complete financial, technical destruction.

While trying to build up a writing career I applied for a grant that would help me out financially while I wrote the next great American novel masterpiece, you know, like 50 Shades of Grey.  I read the rules for applying for the grant several times.  Then I read them several times again.  I updated my grant submission and just before hitting send, I checked the rules yet again.

And several days later I realized I had messed the whole thing up and my submission would likely not count as I hadn’t followed the rules.  And the deadline had passed.  That little bit of cognitive difficulty cost me $5000.

(Well, $5000 assuming I would have been awarded the grant as opposed to other ambitious writers but I choose to assume I would have won if not for that damn costly MS!)

Many people with MS also live with another serious illness.  Mine is germ-a-phobia.  Yet, MS makes me constantly exhausted so I need a lot of help with cleaning. Most of this help comes in the form of disinfecting wipes.  And these wipes don’t come cheap.

Luckily I can sometimes find coupons to use for purchasing these amazing energy saving, germ killing power house cloths.  And the coupons do help, if I remember to use them.  Which, of course, I never, ever do.

While talking about shopping let’s take our meager pennies to the grocery store, shall we? ID-10043818

I try and try to be a saver and the grocery store is no exception.  But disinfecting wipe coupons are not the only coupons I forget.  I forget all the coupons.  I could deal with that, really, how much do coupons really save?

The problem is that I have picked up this bad habit of buying the wrong thing.

Even as I’m looking at an item and putting it in my cart.

Even as I bring it home and put it away.

I will still see the item I needed.

Then I open said item only to discover that it is the wrong thing and thus, unusable. I would return it for the right thing but the product is now opened and the receipt was trashed a long, long time ago.

It’s enough to make a person crazy.ID-100178602

Or, it would be if we MS’ers didn’t already feel crazy.

Thankfully, there is a remedy.

It’s called wine.

I try to save there too.

I bought a bottle recently and saw a promotion where if I save my receipts and bought more bottles I could get a rebate- $3 off two bottles, $6 off four etc.

I was so pleased by this that the next time I was at the liquor store I bought that specific bottle.  I can fight the MS money suck after all.  Wine is crucial and why not get some money back when I drink it?

I was so pleased with myself and my savings effort that I was home and had the bottle open before I realized that I had forgotten the damn receipt!

Good thing the rebate called for big bottles of wine.  I’m going to need them……ID-10012629

Hi friends,

                I would love to hear of some of the unusual ways MS is robbing your piggy bank.  Feel free to share your thoughts in the comments section below.

                Also, my friends over at the Accelerated Cure Project asked me to remind my readers of the fabulous research they are doing with the I Conquer MS project.

                iConquerms.org is a patient centered, patient powered research initiative that needs the help of all of you!  And unlike most things MS related, it won’t cost you a penny!

Please check them out  iconquerms.org

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Why I’m Voting for Snow Miser

Multiple Sclerosis and the politics of temperatureID-10012725

Last winter was a snowy, icy, super cold one.  People complained all over Facebook and threatened to pummel anyone who complained about the heat in the summer.

I, for one, never once complained about the winter and insisted I had reserved my right to grumble about the July/August heat all I wanted.  But I’ve been good and stayed away from voicing my weather preferences.

But it’s been hard, especially when people, probably the same ones who complained during the winter, try to compare their discomfort in the heat with mine.  Trust me folks, It’s not the same.

Your misery is extreme discomfort.  My misery is misery.

Here’s a common dialogue-

Person, “how’ve you been?

Me, “ok.  Had a difficult time during the heat wave last week but am better now.”

Person, “Everyone had a difficult time during the heat wave.”

Really?

Let’s compare shall we?ID-100136480We’ll start with a point of reference.

Multiple sclerosis makes all extreme temperatures a problem.  I wrote about my difficulty with the cold and losing power after a blizzard a few winters ago.  The post was titled Could Be Minutes, Could Be Days and in it, my biggest lament was not being able to have my treasured hot tea to help me through.  A fierce winter storm attacked and hot tea was the main thing I was whining about.

True, I can’t fall asleep if the temperature in my bedroom is below 73 degrees and if I don’t have hot water I go unclean until I do; cold water in a shower feels to me like being stabbed with hundreds of sharp needles.  I get enough of needles taking my meds thank you very much.

And perhaps I’m lucky that I work from home; if you can call these weekly scribbling and promoting my book, work.  (Subliminal message- MS Madness!  buy, buy, buy.)

If I happen to venture out after a storm I do have to watch my footing on icy sidewalks, sidewalks that I am lucky to have shoveled by other people.

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I’m Mister White Christmas

I’m Mister Snow

I’m Mister Icicle

I’m Mister 10 below

Friends call me Snow Miser

Whatever I touch

Turns to snow in my clutch

I’m too much

From Snow Miser, in “The Year Without a Santa Claus”

So to recap- with the cold I have trouble falling asleep, can’t shower with cold water, have to be careful outside and if I don’t have power, can’t have my daily hot treat.

Now let’s look at the problems with the heat.

When the heat ramps up, everything MS wise ramps up too.

The fatigue becomes beyond belief, beyond able to manage because if I’m overheated I’m not sleeping at all.

The cognitive issues become unbearable.  I can hardly think at all.

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My lack of balance issues and loss of coordination issues greatly increase.  Everywhere I move, inside, outside, up stairs, down stairs I’m likely to fall.

I have trouble breathing and often feel like I might pass out.

What usually feels like 5 lb weights added to each leg whenever I move suddenly becomes 25 lb weights.  Thus, what are usually mild aches become downright pain.

My bladder becomes even more obnoxious than usual whether or not I’m hydrating properly.  I tried extra hydration and less hydration during the last heat wave and neither helped the bladder issues.  In addition to having to go more than ever I also covered myself with bruises from walking into the walls in my rush to get where my bladder needed me to go.

So, with extreme cold comes trouble falling asleep, no showers, no tea, trouble walking outside.

With extreme heat come no sleep, trouble walking everywhere, no thinking, trouble breathing, pain, bruises, and lots more increased bladder ridiculousness.

Maybe it’s just me, but I kind of like breathing.  And thinking isn’t too bad either.

All of the above that comes from the heat occurs even in the A/C.  The A/C helps but doesn’t solve the heat problem.ID-100171914

Funny, but the A/C does helps with the cognitive trouble as while I’m miserable the one thing I’m clearly able to think about is my cash flying out the window towards the electric company with every troubled breath I take near the unit.

For people with chronic illness there are heat remedies.

There is a cooling vest I can use.  Problem is, it is wicked uncomfortable and heavy in the house and if I wear it outside I could get shot as I look like a suicide bomber.Picture 27

I had a cooling tie once but that just cooled my neck while the rest of me overheated and then I had no equilibrium whatsoever and was even more confused.

I do have a cooling cloth that may actual work.  The problem with that?  During the heat wave I didn’t remember that I had it!   I only remembered it just now as I’m typing.

(Don’t worry.  I took a break from writing, dug into my closet, found it and will hopefully know what it is when the next heat wave hits.)

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I’m Mister green Christmas

I’m Mister Sun

I’m Mister heat blister

I’m Mr. 101

…..

They call me Heat Miser

Whatever I touch

Starts to melt in my clutch

I’m too much

From Heat Miser in “The Year Without a Santa Claus”

Seriously, which would you prefer?

A white Christmas or a green one?

An icicle or a heat blister?

Something important melting and disappearing all together or turning into a ball of snow? A ball that you can maybe use to defend yourself if necessary or eat if you are hungry.  They don’t make delicious snow cones for nothing friends!

I live in a free country and I can prefer the cold of winter over the heat of summer if I want to.  I can even talk about the differences of each on Facebook if I want. Yet, too often people are inclined to minimize my input, challenge me or outright argue.ID-100206611If you ask and I tell you about my problems with the heat, please don’t tell me you can relate; not unless the heat makes you physically unhealthy.

And please don’t judge me if I prefer the negatives that come with Snow Miser over the negatives that come with Heat Miser.

Snow Miser just works best for me and that’s all there is too it, winter, summer, spring or fall.  But you can prefer Heat Miser if you’d like, even if I don’t quite get why you do.

Here’s the thing.  Nobody’s perfect and I don’t think for a second that Snow Miser has the answer to all my temperature troubles.   He alone, cannot save me from ongoing woes.  Heat Miser’s not without his own charms but me, I prefer the other guy.

Speaking of Snow Miser and Heat Miser, is it my overheated imagination or does Heat Miser’s crazy hair remind you of a certain Presidential candidate?

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This blog post is dedicated to all the people in the United States that are so hot all the time that they even appear red on a map!

Snow Miser lyrics are from FM Static

Snow Miser image from en.wikipedia.org-Snowmiser74shawn.jpg

Heat Miser lyrics are from Thousand Foot Krutch

Heat Miser image from watchmovies90s.com

Donald Trump image from politicalhumor.about.com

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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No Spring for You!

A multiple sclerosis weather report

Harvey Leonard majorly annoyed me yesterday.

What, you don’t know who Harvey Leonard is? He is the Boston area’s head honcho in the meteorology world. He’s been at it for over thirty years, cutting his teeth as a somewhat newbie during the infamous Blizzard of 78.

What, you’ve never heard of the Blizzard of 78? It was the weather event of the millennium. You can’t call yourself a true New Englander unless you have a Blizzard of 78 story. I was nine. My story featured me panicking about a giant tidal wave wiping out my town. The snow was nothing, just an excuse to miss school for a bit.

 

Anyway, I was watching Harvey yesterday when he said something that really made me mad. I was so furious that I actually wrote it down. And then I accidentally threw the piece of paper away. But he said something kind of like this, “you’ll definitely need a coat today and no one is happy about that.”

How does he know? He doesn’t speak for me. Perhaps I AM happy about it Mr. Leonard, thank you very much.

 

You may know your weather, getting your reports accurate about 35% of the time as opposed to the 32% accuracy rating of your fellow weathermen,-statistics courtesy of yvonnedesousa.com which means they are totally made up- but I doubt you know what is in the mind of the entire population of Massachusetts. Most of the time I don’t even know what’s in my own mind, so how can you?

As many of you know from some of my past blogs, thinking especially of Chop Their Happy Little Heads Off, I do not like spring. Spring is the least favorite of my seasons.

And may I remind you that I have not once complained about what many seem to think was a treacherous winter.

 

I have not complained about the cold, the rain, the snow, or the wind.

I have not once complained about the several predicted storms we heard about whether or not they actually showed up.

Going back to last October, I did not complain about how dark it gets so early following Daylight Savings Time.

I DID complain about how confusing Daylight Savings Time is in my post Falling Backwards but that was a complaint about math, not the onslaught of winter or the cold or the dark.

 

I am an autumn/winter person and thus was happy when the Farmer’s Almanac talked about a long winter and was even happier when their predictions came true- take that Mr. Leonard!

By not complaining about any of that I respectfully reserve the right to complain about my least favorite season spring, and my second to least favorite season summer. Let’s begin now shall we? Except the irony of all of this is that we who live in the northeast part of the country don’t even have a spring!

No matter what the calendar claims on March 20th, spring does not exist in our world. Oh, we try to pretend it does. We bring out flip flops and line up for Ben and Jerry’s free cone day, snowflakes falling on our Phish Food like nature’s very own sprinkles.

We tell the world that we are turning the heat off for good only to creep out of our beds at 2AM trying to use our frozen fingers to crank the thermostat.

 

And some of the crazy among us take selfies by the annoying daffodils spreading through a blanket of snow. But let’s face it, we’re cold.

And we’re cold every year. And it rains, a lot. And we walk through these days covered in pollen and talking about how soon spring really will be here. And it never arrives. And we’re surprised.

Then one day we wake up and there are no more school buses blocking traffic and suddenly there is a heat wave and the Fourth of July is in three days. Yes, spring does not show up.

So how can someone like me, with weird temperature sensitivities likely due to multiple sclerosis dread spring when it never even appears in my area anyway?

Because the world around me insists on celebrating spring and acting like it is with us all the time.

The bugs still show up.

The allergies still kick in even on the chilliest of days.

You fall into the mindset of those around you and put on a light jacket and freeze as you do your errands, eagerly anticipating going home and burring yourself under your super warm thermal Bruins blankie.

 

(Slight shout out to the Bears of Boston- this time of year does bring the NHL playoffs on which the Bruins are splendidly skating their way through!)

And here is a complaint I only recently came up with- since everyone likes to pretend spring has sprung suddenly all you hears is super obnoxious home repair noises.

Yes my friends, in addition to my weird temperature sensitivities, MS also gives me weird ear noises that are greatly increased by the sounds of construction, street sweeping and landscaping.

Funny how I’m not troubled by snow plow sounds. But the hammering and motoring sounds of seasonal neighborhoods coming alive make me want to grab some ear plugs, build a blankie fort and live under it forever.

So yes, I admit it. I do not like spring, even when it doesn’t exist. I didn’t mind the ten inches of snow that arrived on March 26th. I don’t mind that my landlord keeps putting my snow shovel in the basement and twice I have had to go back down to grab it.

 

What I did mind was being afraid for my safety when people around me lamented about the horrible winter and expected me to agree. For fear of being attacked, I kept my anti-spring thoughts to myself, smiling as if I agreed while I tucked my hands deeper into my warm mittens.

I do mind that Harvey Leonard, who I used to think was pretty smart, thinks I mind needing to wear a coat today. I don’t.

And while those around me think I’m a fool in my heavy coat and insulated socks, my feet aren’t turning blue from the sandals you should not be wearing yet.

So, to Mr. Leonard and all those who think everyone agrees with them about being ready for spring, my MS challenged brain knows something that you don’t.

This is New England and that means, no spring for you!

Note- you also can’t call yourself a true New Englander if you don’t make complaining about the weather a habit, whatever the weather might be. This blog is all about finding humor to deal and thus I adopt a tongue in cheek style. However, please know that minor complaints about the weather are not meant to disparage in any way the people facing the devastating tornadoes in our country.

My deepest prayers and well wishes are being sent their way…

 

Gonna be a DOOZY…

An MS’er tackles a NOR’easter that could turn into a blizzard

I was going to start 2014 off healthy, I swear, I really was! But in the days leading up to the new year, the weather folks started talking about Hercules-a massive NOR’easter about to attack my area. And EVERYONE, even super healthy people, know that the only way you can weather a storm is with the three C’s- chocolate, chips and candy.

What is a healthy, fit, svelte MS’er, stuck in a not so fit, not so svelte, not so healthy body to do? You have to be storm ready.

The only appropriate thing seems to be to plan on re-starting my ‘get fit’ plan after the storm. Actually, Farmer’s Almanac says it is going to be a stormy winter. Best to start the plan in April. Or maybe May.

 

Seriously friends, holidays, storm planning, brain fog, fatigue and possible power outages have made it necessary for me to release today’s blog one day early. And while I don’t exactly know what Hercules will bring, it seems likely that it will look like the blizzard of 2013, which I have already written about.

So for this week, please allow me to re-post what was originally titled Could Be Minutes, Could Be Days.

For the record, a second blizzard is upon us and I STILL haven’t bought vinyl toilet seat covers!

 

Could Be Minutes, Could Be Days

An MS’er tackles a blizzard

In my world, cold is better than hot (as long as cold includes a nice cup of scalding hot tea,) and snow is better than humidity. Seems I remember in the past, losing hot water and having to take an ice cold shower before heading off to work. It wasn’t fun, but it wasn’t hell.

More recently and AMSEML (after MS entered my life,) I lost hot water again and attempted the cold shower. It was summer and so while I was not looking forward to it, I figured it wouldn’t be a big deal. It was.

The icy water was not refreshing. It felt more like sharp edged icicles stabbing me all over. It hurt so much that I wasn’t able to breathe. I kept telling myself to breathe, what was wrong with me that I wasn’t breathing? It was too much and I burst from my shower covered in soap.

 

Flash forward to storm prep for the blizzard of 2013- the storm that was to arrive only two weeks after a previously predicted snow storm never showed up. I love winter and had eagerly awaited this one, the winter the Farmers’ Almanac promised would be cold and snowy.

The reality is that what I love about the season is being toasty warm and drinking tea while watching the lovely snow fall from my window. I didn’t doubt the blizzard predictions and even enjoyed monitoring them on the nightly news. But no one, no matter how prepared you are, seriously appreciates what a lack of power means on a 20 degree day, at least for more than a few hours.

 

I bought the batteries and bottled water. I watched the weather reports. As the wind kicked up late in the afternoon before the blizzard, I plugged in my electric blanket to warm my bed up before the expected power outages. Just before nine it happened; the power was gone and so was the immediate future of further electrically generated heat. Since I had pre-warmed my bed, and was exhausted as always, I drifted off to sleep.

Morning and frigid air came quickly. When I awoke, I buried deep under my covers and rested there for another hour. I tried to flood my brain with positive self talk.

You knew power outages were likely.

It’s not like you are going to die from the cold, you’re still inside.

So it will suck for a bit, so what, that’s life.

There’s no way to know how long this will last. It could be minutes, it could be days.

Get up and get moving, you’ll have to at some point.

 

When I accepted that cold or no cold, I couldn’t justify lying in bed all day, I crawled from my cocoon and began to layer up. Me, the girl who has never, ever worn hats since rapidly removing the ones my mom insisted I wear on my walk to grade school, (removing the hat as soon as our house was out of sight-hopefully enough time has passed that I won’t be grounded for admitting this,) put on a hat.

It was a miracle I even found a hat in my house. (I think it must have come in the pretty scarf/glove/hat Christmas gift set several holidays before, the scarf and gloves I do use).

I layered on anything I could possibly think of; undershirt, turtleneck, sweater, sweatshirt, sweatpants, three pairs of socks. Where oh where did my leg warmers from the eighties go?

 

I layered up so much that I looked and walked like the Stay Puft Marshmallow Man from Ghostbusters.

Then I realized I had to pee.

My vow to all those reading these words is to never, ever again silently make fun of people who have those soft, vinyl padded toilet seat covers. I may even buy one, if only to use during cold weather power outages.

 

Once I recovered from that shock, I wobbled my padded self and my blankets to where I could be productive in spite of the circumstances, the sofa. Wrapped in my Boston Bruins thermal blankie (still one of the best Christmas gifts eva!), I tried to decide how to spend the arctic day. I was determined not to use the blizzard as an excuse to fall off my “get fit” plan.

I could exercise. But no, I needed to save the treasured batteries on the Wii Fit board and there was no tv anyway. How about outside to shovel? No point, the snow was still coming down and there would be no way to warm up when I was done. I could just move around my house but hauling all those blankets and layers seemed dangerous.

I insisted I would at least eat healthy and hydrate properly. I had even prepared for that- buying produce and rinsing it before the storm so that I could make myself a salad and eat fruit so as not to falter on my plan.

But that wasn’t happening. Everything was so frosty there was no way I was sinking my teeth into an ice cold apple or orange or even attempting to put together a salad. And the water was ice cold too. I did manage a banana for breakfast but that was the end of eating healthy.

 

After that I went to the snacks; easy to open, not cold to bite into. One may wonder why I had snacks in the house in the first place. Remember, there was a blizzard coming and my ‘get fit’ plan is taking the baby steps route.

Still trying to be somewhat productive, I thought I would use my laptop battery to get some writing done. But no, between MS and the freezing air, my fingers were not inclined to cooperate.

 

What I missed most was that scalding cup of tea I so treasure. So much so, that when due to a dangerously low amount of wax I needed to blow out one candle, I fell into a dangerously euphoric state. Picking up the glass covered candle, I realized how hot it was.

As I tightly grasped the bottle with both hands, I almost felt it was a mug of tea I was holding. I popped out of my reverie before I gulped the wax itself and made the best of the situation by cuddling the bottle against my face, neck, hands and arms until its warmth was gone.

 

Soon the MS aches ramped up and the cold went from being unpleasant to excruciating. At some point it turned dark again and I shuffled back to my cocoon of bedding, hat and all.

I was luckier than most. By the next morning, the power was back, 36 hours after it went out; much, much better than what some folks were dealing with.

Here is what the storm taught me. The best of intentions can often go awry if something bigger than you has other plans. Like say, God, or storm fronts, or multiple sclerosis.

 

Sometimes you just have to give in and wait out what is holding you back, even if it could be minutes or could be days.

Controlled cold is better than uncontrolled heat. Controlled heat is better than uncontrolled cold. And, in spite of this frigid, miserable Saturday, I stand by uncontrolled cold being better than uncontrolled heat. This way, I can still whine in August.

And lastly, what I learned most, I need to start looking for vinyl toilet seat covers…..

 

 

A Batter World

A new and improved food group for MS’ers

 

Warning-today’s blog is not for the gullible, children, or the faint of heart.

My sister Laurie insisted that I list this cautionary note here as she believes this blog could be imparting dangerous information. She also insisted that I note that I am not a doctor or a nutritionist. While we are at it, I should also mention that I am not a scientist nor, for that matter, much of a cook.

Hey, batter batter, SWING, batter batter….

And by batter batter I don’t mean baseball, which is just not my thing.

 

Bring on hockey with all the excitement and fast moving action! And, in hockey, if any of the players decide to spit, it will likely be blood and teeth instead of tobacco- less disgusting…

This summer was a long, tough one to be sure. But while I was suffering through it, I made a new discovery. I found an awesome new step on the food pyramid. The saying for the batter I am talking about goes Hey, batter batter, STIR, batter batter….

 

You guessed it; cookie dough is the new super food and as such, rightfully deserves its own spot on the recommended daily allowance list.

Before you scoff, hear me out.

It is made from wholesome things-eggs, sugar, flour, vanilla, butter, salt, chocolate chips…All natural ingredients- no chemicals. Some people add raisins to the batter to make it healthier although I don’t recommend that. Being a Cape Cod girl, I won’t object to cranberries. And I guess oats are ok…

Cookie dough is versatile. In the summer, you can add it to ice cream which has even more natural ingredients and makes it even more cooling and refreshing than your cooling vest.

 

In the warmer months you can bake it which warms you up and makes your home smell lovely, yet an additional mood enhancer.

You can eat it raw or once cooked, you can eat it hot or cold.

You can consume it whether you are a baker or not.

You can buy it already made for you or make your own.

Here is where Laurie’s objection comes in. It says on the packaged cookie dough tubes that you should not eat it raw. I believe this is a major corporate lie. Perhaps the cookie manufacturers are in cahoots with the stove manufacturers and the gas and electric companies.

The reason they claim you should not do this, is because it is dangerous to eat uncooked eggs and if the batter isn’t cooked, then the eggs aren’t either. But I used to have a gym teacher who claimed he started his day by cracking six eggs in a big glass and then drinking it down in one gulp. And he is alive and well.

At least, I think so….

 

Also, I have a super smart cousin who just got a Doctorate degree in something so smart I can’t even remember what it is. She eats raw cookie dough. One time she got super sick after eating a lot of it but after consulting with me and doing her own research, we discovered that it was actually the stress of writing her dissertation that made her sick. The raw batter was completely innocent…

If raw fish is a delicacy, then raw batter is a necessity.

My major, problematic MS symptoms lately have been temperature sensitivities, fatigue and killer mood swings. This long, tough summer showed me the benefits of this latest super food in coping with these symptoms.

You are supposed to eat healthy to feel good. Well, I’m sorry but right or wrong, cookie dough makes you feel good instantaneously. There is no long drawn out waiting process as the nutrients get absorbed into your blood stream and start doing the things that they are supposed to do.

Take that acacia berry, pomegranate and kale!

 

Plus, cookies go great with milk giving you even more nutrients! They go so well with milk that Ben & Jerry’s even made a new flavor giving you the milk and cookie benefits all in one easy ice cold pint.

When after eating too much dough you start to feel a little sluggish all you have to do is ingest more- simple.

There are multiple examples of this- I know, I have been looking.

On the sitcom The Middle, when Frankie Hect has to break some bad news to her daughter Sue, she brings some cookie dough with her to start the talk off on a good note.

 

Throughout the beginning of time, moms would let their kids lick batter off the beaters to give the children a little lift. If the mom’s were super cautious, they would turn the beaters off first.

Cookie Monster is absolutely a gentle giant when he gets cookies into him. Hello, where do you think cookies come from?

 

If all of this evidence isn’t enough for you then take my ultimate argument- the Pillsbury Doughboy the child who lives, functions, and exists, entirely on dough.

You never see him eating his vegetables or making sure his grains are whole.

His weight stays steady.

 

And he always bounces back from violence. He has been assaulted on a daily basis and he never bruises, falls down or complains. Usually, he just giggles.

How can you possibly negate this positive role of dough in a daily diet when you witness the durability of the Pillsbury Doughboy?

You may think me ridiculous but allow me to remind you; the people in the know used to think that red wine was for drunks and pot was for druggies. Now doctors recommend them for medical reasons! So why not cookie dough?

I am not necessarily wise enough or brave enough to say batter is all you need in your diet. Maybe those other food recommendations (although I would point out that eggs have protein,) are important too. I am just saying that the feel good benefits of cookie dough have their place.

Like, right by me when I am bummed out- in ice cream if the weather is hot and humid, or fresh from the oven if it is cold outside….

 

 

 

Taffy Summer Revisted

An MS’er revisits a candy store

 

Friends, due to a crazy week and a prediction of no internet for a few days, I am posting this week’s blog early.  And also due to the above, it is a repeat from this time last summer.   Luckily the humidity hasn’t been as bad this August but I think we can all still relate……… 

This post is dedicated to all of my Cape Cod friends who are likely in the deep, deep throes of Augustitis. It’s ok my over worked, over heated, over tired, over questioned, over being run over friends- Labor Day will be here soon.

 

The stickiest job I ever held was at a candy store that made its own salt water taffy. (In case you are wondering, the salt water part is a myth- no we didn’t take beach pails across the street, collect the bay water and pour it in the taffy vat.)

 

This was my first real job at the legal age of 14 as opposed to the four not so real jobs I held before.

Those jobs included selling shells (high end shells painted with nautical themes by my very artistic uncle), sweeping the sidewalk in front of one lovely storefront at the bottom of my street, and babysitting the three year old whose parents owned the store next door to the sweeping place. A job where I would watch the child in the backroom of the parents store or take her to the beach to build sandcastles as long as we didn’t go in the water past her knees.

The craziest job was during the summers when I was 12 and 13 and ran my family’s guesthouse. I would take strangers (often single men) up to their bedrooms in an empty home and give them the keys to the house.

Luckily it was never a problem (oh, the bliss of the naiveté in days of old.)

But I have been thinking of the candy store job a lot lately, and I am not sure why.

Is it because no matter how clean the owners kept the place or how many inspections they passed, the floor of the backrooms were always covered in corn syrup? That reminds me of how sticky I feel in this miserable humidity.

 

In this damp sticky weather I am sticky as soon as I wake up. I am sticking to clothes, to chairs, and with my MS clumsiness, I am sticking to walls too.

The summers at the candy store I also stuck to everything. I easily ruined three pairs of shoes each season and those were the only times in my life where I actually followed my mom’s “take your shoes off as soon as you come in rule.”

I would need to allow an extra five minutes to make it back to work from my lunch break as my shoes stuck to the sidewalk with each step and added precious extra seconds to my walk as I forcibly yanked my feet off the ground.

No wonder I turned out clumsy, MS or no MS.

This weather is making me stick everywhere and I am just a sticky, icky mess similar to the sticky mess I was at the candy store. Problem is, at least taffy is sweet. I am not feeling so sweet these days.

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Maybe this job is on my mind as I am working so hard on my ‘get fit’ plan and those summers were the years when friendly tourists asked me how I stayed so skinny working in a candy store.

It actually wasn’t that hard. Believe it or not you get sick of fudge easy when you smell it all day long and I never again want to even see taffy or corn syrup. Ah, but it is nice to remember that at one time people referred to me as “so skinny.”

Perhaps I am thinking of those busy summers as I suddenly realize that I used to love the season and the excitement the crowds, summer activities, and the hot weather brought.

Not so much anymore.

 

Now the crowds translate to noise which makes my ears hurt, much too long to get anywhere or do anything and dangerous road conditions. And the hot weather makes me want to move to the Artic.

Yes, that is it. That is why I am fondly pondering those years in the seventies. I am wondering how I survived and I don’t mean in the guesthouse business.

No one in my world had ac in the eighties. We definitely didn’t have it at home and not only did the candy store not have it, the heat from the ovens and taffy machines jacked up the temperature. Yet I don’t remember suffering like this.

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What is causing me to turn into an achy, sweaty, smelly mess as soon as the thermostat hits 82? Is it the extra lbs? Age? Global warming? MS?

Oh yes, MS affects everything, especially things that happen between June and September.

I can fondly ponder all the memories I want. As long as I ponder them in an ac cooled room with a big glass of ice water and some time to rest.

And no taffy anywhere!!

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Little Bodies, a Vest and Maybe a Blue Tit

The MS plagues of July

The calendar was pretty full from early June to mid-July. Both with fun things and not so fun things. Stressful things and relaxing things. Things that I added to the calendar and things that were added to my calendar for me.

In the MS balance beam of energy, the time was not allotted as well as it should have been. But we MS’ers try to roll with the punches.

I was surviving and resting as much as possible. And then July rolled in and decided to throw some extra punches of its own, just for fun.

 

The first bummer was that my landlord announced he was selling the small house/large cottage I have been happily living in for almost six years. This is the worst time of year to be looking for a place to live in my area as the tourists gobble up what living quarters they can, at the most ridiculous prices imaginable.

Simultaneously with this announcement, came a heat wave of extreme portions with the worst humidity we have seen in a long time.

My little rental has pre-fab storm windows that make a window air conditioner nearly impossible to put in. I survive with a little portable unit that needs to be emptied constantly, usually at a rate of every two hours. This year, the humidity has been so bad, that the draining ramped up to every hour or more.

 

Needless to say, I was a miserable mess. Unable to think, and barely able to move. And when I did move, my balance and coordination were completely shot and I became klutzier than I ever have been. My body is covered in bruises from walking into things, mostly into my portable ac, every time I had to drain it.

At some point my head cleared enough to remember that the Multiple Sclerosis Association of America had sent me a free cooling vest and maybe I should try it. When it arrived, I had luckily thought to put the ice packs in the freezer and so they were ready to go. I pulled them out, dropped them as they were slippery and I was clumsy, but managed to stuff them into the vest.

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Daddy was a lawman. I know what you are thinking, where did that come from? Her MS brain has really gone off the charts. I don’t know where that line came from either, especially since Southern Belle I am not. But it popped into my head as I tried on the vest.

My father was a police officer but I was more likely to tell people that by saying “my dad’s a cop,” rather than “daddy was a lawman.” The fact of my dad’s life’s in law enforcement is the only explanation I can offer of why I picked the dark blue color for my vest.

I put it on and immediately looked like I was wearing a bullet proof vest. Either that or I looked the opposite of fashion protection in a suicide bomber look. Regardless, it didn’t seem safe to leave my house with that thing on- don’t want to freak out the neighbors just before I move away. I could wind up on a watch list of some crazy kind. But I must say, struggling through the misery of the heat and humidity, the vest did help when trying to exist in my sauna of a home.

Picture 27

One of the days on the calendar consisted of a long drive in an air-conditioned car and so I was happy. I came home refreshed and expected the muggy air of my house. What I didn’t expect was to be swarmed.

Opening my front door I was confronted with a ton of house flies. And when I say a ton, I mean a ton, not just an annoying one or two. It looked like something out of the Exorcist and was very upsetting. I immediately left and drove to the hardware store for help.

I bought some disgusting but guaranteed to work fly strips. With the sweat and tears dripping off my face, I tried to hang them and managed only to cover myself and my home in the sticky mess; the sticky, very hard to clean mess.

 

They caught one fly. One poor dumb fly who was then a message to the others “stay away from this stuff-it’s a killer.” I had to resort to the old fashioned method of killing each with spray which then clogged my lungs and made me gag.

I killed over thirty that day, counting their little bodies in disbelief at how many there were. I didn’t want to kill anything and tried to get them to leave via an open door but that only invited more in. For several days I was constantly spraying and swatting flies.

It’s a mystery why they choose my home. I didn’t have any food out and I have yet to find a hole in any of my screens. It seemed a bizarre phenomenon until I mentioned it to others who told me they had it happen to them, one woman in the middle of winter. I would have called Ghost Busters for sure on that one…

 

Just as mid July came around and the scheduled chaos was about to end, I came home from looking at a possible rental to find a dead blue bird at my front door. Squeamish and stressed, I freaked.

I should maybe have said a prayer for the poor thing but my brain was too fried and fatigued to think that through. I thought I should do something proper like bury him, but the only shovel I had was a snow shovel.

I am not proud of this but I did the only thing that seemed to make sense to my MS body and brain. I collapsed on my bed in front of the ac and when draining it, swatted a fly or two.

Nature and bigger creatures, take their course and when I came outside the next morning to pay my respects to the dead bird, his body was gone. In its place were several blue feathers.

 

I worried that the demise was the final straw in what seemed to be a summer of plagues and was sending me the ultimate message of doom. I went to the internet to find out what his death on my doorstep meant.

First, I tried to identify him. He was clearly not a blue jay. Looking at birds I decided he was either a simple blue bird, well he was a blue bird but that is actually a name of a bird species, or, he was a bird called a blue tit. I’m not kidding. That is a bird name.

 

It probably wasn’t my bird corpse as they don’t seem common in my area, but I couldn’t help thinking of him as a blue tit anyway. Who named the poor guy- the porn industry?

Researching further I learned that what his death on my door meant was less death, but change.

The next day the heat broke and a new rental came through. So as much as I have loved living here, the plagues of July seem to be telling me it is time to move on. A change is coming, and although I couldn’t see it when the thermostat hit 98, it’s a good thing.

My new rental comes with a normal ac and right there is the start of something better. So while I will be crazed with sorting, packing, cleaning, and moving six years of my life, and trying to fit in some natural Vitamin D without too much natural Vitamin D, I do live near the beach after all, this tricky time too shall pass.

And here is the MS lesson in all this. When you are planning your balance beam of energy, plan on planning for what you haven’t planned. What is that plan? You can’t know, just plan on it anyway.

That, my friends, is the nature of multiple sclerosis….

Note- Kidding aside, I am very grateful to the Multiple Sclerosis Association of America for the vest, which does greatly help. Just don’t wear it to an airport. Unless you want to catch the attention of a cute TSA agent!

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Petless

A multiple sclerosis companion

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I didn’t have any real pets when I was a kid. At various times I had a hamster, a guinea pig and a fish named Elvis but I am not counting those as “real”. By real, I mean a pet that you can cuddle with and who is able to roam safely and freely around your house.

My mom was ailurophobic, which is just a fancy way of saying that she believed she was a mouse in another life, and cats were out of the question. She did like dogs, but did not like the money, mess or work involved with letting your kids have one.

 

I tried getting around that by kidnapping dogs from time to time and saying they followed me home. The first one REALLY did follow me home, and when it looked like the dog officer wouldn’t be able to find his owner, we almost got to keep him.

Since I got close, my nine year old brain figured it was only a matter of time before an owner would not be found and started grabbing dogs by the collar and dragging them home with me. What I didn’t figure out is that their collars had their owners name on them and thus, never got to keep them.

 

Too bad too, as a pet could really come in handy now. My rental does not allow pets and so I am still petless. But all the smart people on the web say that pets can help promote healing. Luckily for me, my portable air conditioner must have read those same websites.

During a miserable heat wave in my area, when I really needed healing, my ac came through. It wasn’t only that it helped me cool down, it took to staying by my side as if it felt the need to cuddle.

 

I don’t think the fact that I was staying glued to its cold little body had anything to do with it. My ac seemed to want to bond too.

With my MS comes the annoying symptom of having to pee constantly. The heat and humidity didn’t help as I needed to drink more water, which meant I needed to pee even more.

Here is where the real  bonding came in. Suddenly, my little ac had a small bladder. The hotter it got, the more it had to pee as well.

Technically, the ac actually had a small basin that collected water droplets and needed to be emptied frequently, especially in the humidity. But how else do you explain it when I got up in the middle of the night and my ac had shut down, looking pathetic and in major need.

 

I emptied myself, and emptied my ac. It really had to go and actually had an accident on my bedroom floor. But water free, we both settled down to try to rest.

Two hours later, I was up again. Getting out of bed, I saw my ac looking agitated and miserable. It was almost as though it was saying “Yvonne, wait for me! I have to go too, really, really bad!” This continued throughout the heat wave; relieve myself, relieve the ac, rest briefly, repeat.

During that horrible week my ac and I grew closer than I ever thought possible with any of the dogs I tried to drag home. And with the comfort it offered when I was an achy, miserable mess, I realized the experts are right. Pets do help promote healing!

 

This particular blog may seem familiar to some of you.  It resembles one I had previously posted here, Feelin Hot, Hot Hot and was a blog I wrote for another website, MSRelief.com    

I haven’t run out of new ideas- MS seems to offer a lot of them!  But have been a little overwhelmed  lately.  I promise an original blog again soon.