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Just another Weird, Weird Day

“My MS is not your MS and your MS is weird.”

Brilliant, semi-famous quote written by me

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Your MS is weird.  And sometimes, I suppose, mine is too.  Life with MS is certainly weird.  And then there are weird people and weird circumstances.  Recently, all this weirdness converged on what should have been a relatively normal, unweird day.

I dropped my mom off for a doctor’s appointment and then left to run an errand.  When I returned to the office and she wasn’t ready I made myself comfortable with an engrossing book. As I sat my throat grew dry and I noticed a water cooler in the corner of the waiting room. I kept meaning to drink some but just couldn’t leave my compelling read.  After this sentence, no, after this paragraph, definitely after this chapter, I will get up and get some water.ID-10056064

But my mom poked her head into the room and nodded at me, which caused the nurse behind her to motion me to follow them.

This was concerning. My mom is very private and hates medical stuff.  If I was needed in her appointment it could be a bad sign.  Turns out, it was simple miscommunication.  Her wave was meant to tell me that she wasn’t quite done but the nurse took it as an invite and insisted I join them.

“Well, you’re here now so you might as well stay,” my mom said.

I sat in a chair opposite the doctor’s desk and my mom sat on the table.  The doctor entered and my mom introduced us. I was surprised by his strong Greek accent as my mother had never mentioned it before.  I could barely understand him but it didn’t matter- it wasn’t my appointment.

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Since I was stuck there I thought I would listen even if I only understood one out of twenty words he said.  I managed to grasp that he was talking about sodium; ie salt, ie the stuff that makes fast food taste good.  He wanted my mom to cut down on sodium.  He wanted this so much that he kept talking about it, a lot.

At least I think that’s what he was talking about.

But he seemed to address most of his talking to me.  So what if I happened to be munching on potato chips- again, it wasn’t my appointment.

(Kidding.  I wasn’t munching on anything but was completely regretting not grabbing that water when I had the chance.)

He told my mom he had something for us.  He left and came back holding a loaf of bread.  He manipulated the plastic bag the bread came in so that a slice was near the opening and he insisted I take it and split it with my mom.  It was an order and I guess the reasoning was to suggest we now eat this particular brand of low sodium bread.ID-100151613

I gave my mom half the slice but didn’t know what to do with my half.  I nibbled on it because that’s what the doctor seemed to want but it was like sawdust in my mouth.  I was trying not to choke.

There was a trash bin in his office but throwing my half away seemed rude.  Without salt it didn’t seem very crumbly. Should I scrunch it up and shove it into my pocketbook?

The whole thing seemed odd.  I’d never had a doctor, even one of my own, offer me a snack before.   I thought of how when I go to church and my priest offers me bread he’s polite enough to also offer some wine to accompany it.  Could I ask this doctor for wine?  What’s the sodium level in wine?

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He then said that we should only get 150 mg of sodium a day.  While he was stating this he was also pointing to a chart that recommended 1500 mg a day.  I was more confused than ever and was now super afraid of salt and hoped he knew the Heimlich as I tried desperately to finish my half slice of bread.   This seemed like major medical weirdness to me.

Outside his office, it was past lunchtime and despite the snack my mom and I were both hungry.  But I couldn’t think of a single place to go for lunch that wasn’t a salt trap designed to suck us in.  My mom suggested a place and I agreed to go there but was firm.

“Mom, we can go there but I’m going to tell the waitress that we don’t need menus as we will have water and plain lettuce for lunch, no dressing.”ID-100182547

“Good for you,” she said.  “I’m getting a menu.”

I stopped in front of the placard that said “Please wait to be seated” and read the specials board looking for anything that wasn’t filled with evil sodium.

My mom made her way into the restaurant and chose a table.  What was she doing?  We were supposed to wait to be seated as the sign clearly stated when I read it again.  I scolded her and she came back.  She also read the sign which in her reading said, “Please seat yourself.”

How did the sign change its wording in the seconds between my reading it twice and my mom reading it?    Since I’ve been able to read since 1st grade, I decided that the sign changing itself was a clear case of multiple sclerosis weirdness.

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After errands I dropped my mom off and headed home.  Thinking about health issues and my MS lack of reading skill issues had me wiped.  But I just had to go to the post office before I rested.  Who knows what was waiting for me in my mailbox- the Publisher’s Clearing House notice of my one million dollar winnings?

An invitation from Bradley Cooper to be his date at the premiere of his new movie?

Free tickets to the dream vacation of my choice?

Fatigue was not going to keep me from missing such important mail!

I collected my exciting mail- the water bill- and then got back into my car which refused to start.  Try as I might, I absolutely could not turn the key in the ignition.

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I struggled.

I forced.

I whined.

I took deep breaths and tried again.

And again.

There were many strong looking males in the parking lot, the type that looked like they might know a lot about cars, but I was too tired, too shy, too independent, too WIMPY to ask for help.  I preferred to sulk instead.

After about 20 minutes of this I called AAA.  I answered all the nice agent’s questions.

“Did you make sure the car is in park?”

Of course I did.

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“Did you jiggle the steering wheel?”

Of course I didn’t.

I jiggled and turned the key and the car started.  It was then that I remembered this same thing had happened to me twice before and jiggling the steering wheel was the mysterious answer.  But I had forgotten this trick.  Automotive weirdness.

Back at home I figured I had earned myself a snack, something crunchy.  I was proud that I had recently purchased something from Trader Joes that was sure to satisfy AND be healthy.  It was a bag called Crunchy Curls– a potato and lentil snack.ID-100132490

I checked the sodium, just to be sure.  And the nutrition label said that while this snack had no sugar, it had 380 mgs of sodium!  That’s more than regular potato chips.

But it’s made from potatoes and lentils?  How can this be?ID-100180475

And that, my friends, is unfortunately called life weirdness.

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What was the book that had me so involved I couldn’t even break to get some water?  It was the newly released Something on Our Minds, Volume 3– an anthology of writings by people living with multiple sclerosis.   The works are as varied as the writers and MS itself. Best of all, all proceeds from the sale of this edition will be given to the Accelerated Cure Project, an excellent non-profit determined to cure the MS beast.

Something on Our Minds, Volume 3 is available on Amazon and is totally worth checking out!

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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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