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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 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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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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MS Extreme Sports

Multiple Sclerosis sporting events

Years ago, my 10 year old nephew spent the weekend with me and we went to the video store to rent some movies.

(For you young ones who need clarification, my nephew is 21 now so this was back in the scary days before Netflicks, On Demand and Amazon. There was no instant movie watching gratification. If you wanted to watch a movie you actually had to get in your car and drive a few minutes to a store to see if the movie you wanted to watch was even available and then you paid for it and brought it home. This is how we used to have to do it- horrors I know.)

He was into skateboarding and so the movie we rented was about extreme skateboarding. We unknowingly turned it in late and I had some explaining to do when my boyfriend and I rented a movie the next weekend and he wanted to know why he was paying a late fee for a movie titled XXX that I supposedly rented with my nephew.

“It was called XXX as in triple X sporting events-skateboarding, snowboarding, dirt biking.”

‘Uh huh.”

For some reason, remembering this story got me thinking about extreme sports for MS’er’s. I know many of my fellow MS’er’s keep themselves very active. Montel Williams went snowboarding in Chile this summer. Is there even snow in Chile, especially in the summer? I was too fatigued to Google this fact to get that question answered.

My aunt tells me her friend has MS and participates in triathlons. I don’t know what a triathlon is but just saying the word is making me tired.

And then there are a lot of people with MS who walk in the MS Walks to raise money and awareness about this insidious disease. I could do that. I bet I could walk the whole route; if someone let me borrow their motorized chair maybe.

I am proud of my fellow MS’ers and say good for them! But it is making me feel left out. How come there isn’t a sport for me to go the distance in? There are some things I am great at.

How about an extreme sleeping event? I would totally ace that one! One time I slept a total of 23 out of 27 hours! Can Montel do that?

What about an extreme bladder release event? How many times can you empty your bladder in one night? My record is 18 in a five hour time period. That is extreme for sure!

How about a driest mouth event? My meds cause the worst case of dry mouth and I swear that if I didn’t brush my teeth constantly, I could grow a forest on my tongue.

How about a pin cushion event? One time, I had three different shots in one day- my regular, a blood test and the flu shot. How many living pin cushions are there in this world?

I do, I feel left out. Perhaps I will make my own extreme video. Of course it might be a little boring for others to watch in the sleeping event.

And I am not sure how much visual detail in the bladder event I want to include, but I will figure this out. After I go to the bathroom and take my meds. Then perhaps I will rest for a bit……

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