Category Archives: MS Social Events

Holiday Heart Madness

A post Valentine MS post

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

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

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

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

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

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

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

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

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

Is that wrong?

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

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

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

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

And what’s the latest rule on Going Dutch?

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

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

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

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

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

And you may be right.

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

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

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

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

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

I don’t think Steve Harvey thinks it is.

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

What do my single MS friends think about that?

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

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

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

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

PPS- Happy Black History Month!

PPPS-Happy President’s Day!

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Rock in a Windy Place

A decisive multiple sclerosis night out

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Is MS the reason why I’m so freaking indecisive?

I’ve thought about it a lot and can’t decide.

Last Saturday I had plans to meet up with my equally indecisive friend, Lucy.  Not the young Lucy from an earlier post, Out of the Mouth of Lucy; this Lucy is an adult and we have been friends for years.

We couldn’t decide what we were going to do that Saturday night- we just knew we wanted to do something.

Someone from work had given Lucy free tickets to see a live band that we had never heard of.  The words “free” and “live band” should have definitely defined our options but we just weren’t sure.

Multiple sclerosis was certainly a factor in my indecision but not in the way you might think.  The loud noise and fatigue worries that usually come with me to social events actually slipped my mind this time.

My worry was the venue.  It was a tent about 25 miles away located next to an abandoned, creepy, air force base on a cliff overlooking the ocean.

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What’s wrong with that?

A tent means a tent which means no facilities which means the dreaded port-a-potty.

Complicating my horrific MS bladder is my greatly increasing germ-a-phobia and port-a-potties I just can’t do.  I don’t care about the tricks people have shared with me for using them. Just the idea of opening the door sent me cringing……

But still, live music for free, I was tempted.

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Lucy showed up at my house and we discussed our evening options.

“What do you want to do?”

“I don’t know, what do you want to do?

Back and forth we went until we couldn’t take it anymore and our night was flashing by.  We finally wrote our different options on folded pieces of paper.  I made Lucy pick-I couldn’t handle the pressure.

The tent won.  So I used the bathroom for what would likely be the last time in several hours and we started out.

Five miles into our journey the sky darkened.

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Ten miles in we heard thunder and saw streak lightening.

“Do you think we should turn back?”

“I don’t know, what do you think we should do?”

“I don’t know, what do you think we should do?”

The rains came just before we reached our destination.  But once in the parking lot it seemed to let up a bit.

It was then I made my only decisive decision of the evening.

“Lucy, I think it’s letting up- let’s make a run for it.”

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No sooner did we walk away from the car when the downpour hit, complete with heavy winds and, of all things, hail!

So much for decisions.

We rushed under the huge canvas arriving soaked, pelted, and bruised.   We still hadn’t totally committed to this concert but it would have been silly to leave at that point.

So we shook ourselves off, headed to the bar and then found seats on the edge of the venue, should we decide to bail early.  In minutes the wind grew fierce-so fierce it blew out the canvas sides of the tent leaving us wetter and even more beaten up.

It scared us too and we did the wise thing, running to seats deeper underneath the now shaking tent.

We watched the frames and speakers wobbly above us as we listened to the howling wind.

Should we leave?

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It didn’t help when I heard the fellow townie behind me say, “aye, there’s a squall a-comin. Hope this bitch is anchored down.”

Nor did it help when the band took the stage and the lead singer held up his beer, toasted the crowd and exclaimed “Well, if we go down at least we go down together.”

While amusing it was also concerning. I’m not usually so wimpy but being surrounded by 200 plus people when a huge, flapping, filthy canvas collapsed in a freak storm seemed to me to be the stuff of nightly news proportions.

I’m not afraid of the end; I just worry about how the end happens.  If this was to be the end it didn’t seem so great, being trampled by an audience at a concert I hadn’t committed to with a band I wasn’t sure I would even like.

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I almost would have preferred to be tossed from the tent into the Atlantic just a few yards beyond.  Perhaps entering a free standing port-a-potty wasn’t such a bad idea after all.

Yes, leaving would have been the smart thing to do.  But I had just shelled out $7 for a little plastic cup of cheap wine.  I figured we could reassess the situation after a few more gulps.

The end would seem smoother if I had a small buzz going on.

Thing is, about two songs in, and four sips down, we stopped worrying about the risky weather.  The “bitch” must have been anchored down or maybe the winds let up. Who knows?

I can’t tell you because the band was that good!

Not AEG

Not AEG

Before we knew it, the Adam Ezra Group had us clapping, then chair dancing and then actually dancing

Soon I forgot about port-a-potties and tents.  I forgot about the end and being indecisive. I even forgot about expensive cheap wine.

The whole night seemed to fit together perfectly when Adam Ezra introduced one song based on a humiliating experience of his.  At the end of his introduction he asked “isn’t laughing at our embarrassing moments healing in some way, especially when sharing those moments with others?”

I could relate.  Isn’t that exactly what I do?  Don’t I take the humiliating things multiple sclerosis makes me do, because of course, I’d never do stupid stuff on my own, and then share it with all of you so we can laugh at me, and at MS together?

And I realized that perhaps it’s the unexpected moments, the ones you really don’t decide, that make life fun.

And this band was definitely fun!

There’s one terrible, horrible side note however.

The last song the group performed was an acoustic cover and they asked the audience to come down to the stage and sing it with them. Everyone was pretty hyped and so we headed down, excited to participate.

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But then I heard the opening notes of all things, of all the songs in the world, “Let it Be”- a Beatles song!

As you likely know from millions of my prior posts, I’m a Stones fan.  And while there are many people who can be both a Rolling Stones fan and a Beatles fan, I’m not one of them.

I glared at Lucy and her smile told me to get over it.

And I did!

The Adam Ezra Group was that good!

Adam was being filmed as he walked among us singing and playing.  At one point he stood on a chair directly in front of me.  And so, you my friends and readers who happen to be Beatles fan should be pleasantly shocked to know that someone, somewhere has footage of me dancing and singing to a Beatles song!

What has the world come too???

If you get a chance to check out the Adam Ezra Group either in person or on line you won’t be disappointed! And no, I’m not being paid to promote them.  I just love their music and think you will too!

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If you’re in the Wrong Airport, you Might have MS

Chicago MS Summit Part II

Part 1 of this post appeared on my blog last week and is titled,

Meet Me in the Windy City

Novartis provided all the airfare, hotel, meals and travel costs for this summit.

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I surprisingly still had a lot of energy after the summit ended. Maybe I shouldn’t have been so surprised as I had taken one of my legal speed (ooops, I mean prescription stimulant) pills that morning.  I was glad I did.  The day was beautiful and I wanted to explore a little of the city.

I had heard that Navy Pier was only a mile or so away and while I didn’t know what Navy Pier was, it sounded fun. Problem was, I didn’t have directions and I only had two hours to explore.

I walk better than I stand and one mile is no big deal. But due to the time and no directions issue I chose to take a cab there and then walk back.  The first cab I spotted was driven by an Asian man who may not have spoken English well.  I asked if he would be willing to take me to Navy Pier, feeling bad that it wasn’t a huge fare for him.  He waved me in.

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We drove for a bit and I checked out the famous Chicago architecture.  Then we were stuck in traffic.   Up ahead I saw a huge building with the Navy Pier sign.  It was then that the cab driver said “traffic bad.  You walk. You get out!”

Some people may have been offended but I thought it was pretty funny; especially since he might have been trying to save me a bundle because as we sat in traffic the meter was running.  I had never been kicked out of a cab before and I crossed that off my bucket list.

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After exploring I did walk back to the hotel and met my fellow bloggers in the lobby for drinks, Chicago deep dish pizza and lots of fun conversation. One of the positive things about multiple sclerosis (yes, I said it.  I said positive and MS in the same sentence.  It’s rare but possible to do that,) is the new friends you can make on the MS journey. I’m grateful for all of them.

When fatigue finally crashed into me like a freight train, I faced a dilemma.  There were to be fireworks that night and some of my fellow bloggers were going.  They encouraged me to join them.  I wanted to go but MS concerns overwhelmed me.  Despite the throbbing in my legs I could probably walk to the fireworks well enough but didn’t think I could stand through them.  And I was tired.

One blogger had a wheelchair I could use to sit in during the display. (You know you’re at an MS summit when someone has an EXTRA wheelchair.)  I debated considerably.  I wanted to go.  But taking a wheelchair for me seemed too much. I can walk.  How does it look to see me walking and pushing a chair and then having to sit in it when I stop? Who cares how it looks?ID-100300822

When I said my fellow bloggers and I were at different levels of MS progression I didn’t just mean in terms of symptoms.  I also meant in terms of acceptance.

Ultimately I skipped the fireworks and told myself it was because of the early flight in the am and that it was ok because I had already had way more fun than I expected.  I went up to my room and proceeded to mentally berate myself all night to the point of absolutely no sleep at all.  Yes, I was beyond exhausted and the bed was super comfy.  But still, I tossed and turned and thought and cursed until the morning.

The good thing about not getting any sleep is that you are already awake when you need to be. I got ready and headed to the airport in plenty of time for my flight.  While in the restroom I heard rumors of a cancelled flight. I figured it must be another plane to Boston. But I was wrong.  My 10:05AM American Airlines flight had been cancelled-no reason given- “they just didn’t have a plane-too bad” and was rescheduled for 8:35 PM.

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Huge lines formed as passengers tried to figure out what to do.  A phone number was handed out for complaints and possible alternatives. When I called I was told to go to the next reservation desk for help.  The agent there spent 10 minutes telling me and other passengers why she was too busy to help us.  We were told to stay in line and maybe they could help in another hour or so.  There were no seats near her desk. My legs were hurting.  I needed to make more calls.

It was then that the germ-a-phobe in me collapsed unto the filthy terminal floor and used it as my personal office. I didn’t have the energy to spend ten hours hanging out in the airport and I had no faith that there actually would be a 8:35 flight. I had lost faith in American Airlines.  Actually, I had no faith in them before either but a free trip is a free trip no matter who you fly with.

I called my preferred airline Southwest and was thrilled to discover they had a flight at 4 PM and I had enough rewards points to cover it- yahoo!!! I booked it and set about to finding the Southwest terminal.

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I was struggling cognitively.  I saw a sign that said Millet with a picture of a bed.  What is a Millet bed?  Is that an area where the passengers can rest for a bit?  How could I find it?  I could sure use a Millet bed.  It was several signs later when I saw it again and this time the sign with the bed read Hilton.

The first security guard I asked about the Southwest terminal said “you can’t walk-that’s a whole different airport.”  He must have been a wise guy and so I ignored him and kept on trudging. I saw a sign for an airport shuttle service and asked them if I could take the shuttle to the Southwest terminal.  “No, they told me, that’s at Midway, a whole other airport.”

I still wasn’t getting it. I figured Midway must be another name for Southwest. I had enough of these bozos.  I went outside to the taxi stand and asked how much it would cost for a cab to take me to the Midway terminal. $60 I was told.  And while I stood with legs that felt on fire and breathing in the exhaust from the shuttles, he explained that Midway was actually another airport in Chicago.  Chicago had two airports and I was in the wrong one!

What could I do?

I did the only thing I could think of at that point.  I bummed an unhealthy stress cigarette from an airport employee on a break and told her of my sad plight.

Before I get rebuked please know that I don’t smoke.  Not really.  I used to smoke but I quit because smoking is very, very bad.  I only smoke when I’m stressed.  Or when I am drinking with friends who smoke.  But if there was ever a time for a stress smoke it was then.  And since the air outside of an airport is so bad anyway, it didn’t seem like one cigarette could do that much damage.

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The employee was very nice and we chatted before I got into a cab and she went back to work. And yes, $65 dollars later and more sightseeing of Chicago highways I was delivered to my second airport of the day, coincidentally, much closer to the hotel I had been staying at.

Finally at Southwest I felt better.  Until I had to wait in another line at yet another desk.  I was told to step aside as my wait could be ten minutes or so.  And again, there were no available chairs.

At this point, the tears started. I couldn’t help it.  I do not like to cry in public. It’s humiliating.   But the fatigue, pain and frustration were just too much. It was through my tears that I asked for a wheelchair.

It had happened.  I accepted that sometimes on this MS journey, I’m going to need help.  And I’m just going to have to get over that.

If I want to have fun, if I want to get around, if I want to have a productive life, sometimes I’m going to need a chair.

Or a cane.

Or cheater eyeglasses.  (Those may be more necessary due to old age but you get the drift.)ID-100283174As it turned out, it was going to take them a few minutes to get a chair to that terminal and so they helped me right away so I wouldn’t have to keep standing.  And then they found me an empty seat right in the boarding area specifically meant for people with disabilities.  I didn’t look the part.  I didn’t care.  It was where I needed to be to rest my overwhelmed body.   It was there I waited for my flight home.

So while this MS Summit was for Novartis to learn from the MS community, it helped me to learn too. I learned that life is better with help, no matter how that help presents itself.  Be it a friend with an extra wheelchair or a helpful airline that just rocks or a lone woman on a smoke break.

The next time I fly I will take Southwest and will make sure I have the right airport.  And I will also ask for a wheelchair if I need it.

Maybe, just for fun, I’ll ask for two….

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Yeah, MS, Woo!

Multiple Sclerosis goes dancing

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

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

Please allow me to digress slightly.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In fact, NOBODY DID!

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

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

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

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

At this hall near my hometown, I was dancing.

My friend was dancing.

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

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The kind of cute, rude guy was not.

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

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

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

It was then that I realized something important.

This knowledge is crucial.

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

The lesson is this-

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

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

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Super Balls

Multiple Sclerosis investigates Deflate-Gate

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I went there.  I did.  I went to the topic that has been on the minds of Americans for the last twelve days or so; the topic that has everyone in the country sick of jokes about players and their balls.

The reason why I felt ballsy enough- yes, I did it again- to write about this topic is trifold.

  1. I’m from New England and so I have a very close and important perspective.
  2. I’ve tried and tried but just don’t get football. The game is completely confusing to me. I blame it on MS.  But then again, I blame everything on MS.

And,

3. I saw an interesting multiple sclerosis take on this whole scandal.

But then again, I see a multiple sclerosis take on just about everything.

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I didn’t pay much attention to the story at first.  But then when it was all over Facebook, I started to follow it.  In case you are as clueless as I usually am, the basics are as follows;

The New England Patriots won a football game that was so big, it meant that they could play in the Superbowl.  The team they beat was from Indiana, the bolts or colts or dolts or something.

After the game, there were rumors that the Patriots had rigged the game by under inflating the footballs they used.  Some say this was considered cheating and gave the Patriots an unfair advantage.  They were reported to the big sports people who are supposed to sort everything out when scandal breaks.

Everybody expressed an opinion while they waited for the guys in charge of all the balls to respond.

The coach said he had nothing to do with how inflated or not inflated the footballs were supposed to be.

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The quarterback just flashed his adorable smile and then showed a picture of his gorgeous wife and so all watching became enthralled with their beauty and stopped listening to what he was saying.

But for me, my concern was for the footballs themselves.  No one was talking about how they felt.  No one asked them, the the subject of the controversy, what had actually happened.

Oh sure, people talked to the experts, the ones who were responsible for taking care of and protecting the balls.  But no one seemed to have a clue about how the balls really felt or what it was like to live as a football.

I could relate.  It reminded me of how I feel sometimes with my multiple sclerosis.

Say there is something I am excited about, a party or a game or something like that.  I build myself up.  I prepare and inflate my mind and body to the best of possible circumstances within my control.  I do everything I can to take care of myself and rest and to look pretty and to be prepared for whatever the event will throw at me, throw pun intended.

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I get to the event pumped.  And then, as more and more people approach me, talking to me, tossing suggestions at me, asking things of me, against my best intention, I start to come down.  I want to stay my best, I truly do.  But sometimes multiple sclerosis has other ideas.

Little by little I get weaker and as my legs and back start to ache, I can get smaller too.  But the end of the event it is possible that I have deflated to a soft, wimpy, useless mess in the corner of the event, no longer what I was when I first arrived, no longer as capable as I had been and no longer as able to do what is expected of me.

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And it can upset people.  Especially since I still might basically look the same and they can’t tell that anything is wrong with me. That’s when the judging begins.

What’s wrong with her?

Why is she so tired?

Why wasn’t she at her best?

Why wasn’t she able to do what was expected of her?

Why can’t we count on her?

If she is so sick, why does she look the same?

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These folks might inquire.  They might ask the experts and the doctors what is wrong with me but usually they won’t accept the responses given.  It is easier to assume there is a scandal or cheating aspect involved.

She probably didn’t take her meds.

She probably took too many of her meds.

She is probably just being lazy.

Her doctors are probably useless.

Maybe her doctors are really doing nothing and scamming her insurance company.

And all the while, these folks aren’t asking me, the innocent, what is really going on.

Can you relate?

Can the footballs at the heart of this scandal relate?

And I don’t even have a talented, beautiful, super couple to defend me.

All I’m saying is let’s take a step back and look at the big picture- if the balls hadn’t lost air as they were exposed to the violence, the elements and the rumors, would anything have changed?

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At the very core of the footballs, if they happened to lose a little air along the way, would the players, families and friends who love them, love them any less?

Maybe it’s time to learn what matters and what doesn’t.  As the balls taught us, show up and do the best you can with what you are given.   And hopefully, friends and family, players and coaches, will make the best out of what you are able to offer them.

No scandal needed. No insults, rumors or drama.  Just have faith that when your balls tell you they are doing the best they can, or are or are not as big as they’re supposed to be, it’s how they’re are treated that really matters.

You may say I’m crazy.  And maybe I am.  But I no longer care.

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There’s a big, super game coming up and that’s where the real focus should be.

As a New Englander, I’m going to do my best to be as supportive of the balls as I can be.

Especially since I don’t really get their job. And since I may not be completely inflated myself, I’m just going to trust that they mean well and are doing their best.

If this whole situation has taught us anything, it’s that we need to protect our balls.

Truth is friends, I’m so clueless I will have no idea if they are doing their best or not.  And I may bore easily and change the channel.  But in my NE/MS heart, I am rooting for them and saying come on NE, do the best you can with the balls you are given!

Dear friends, please remember that my blog posts are tongue in cheek and I’m not afraid to get a little silly to try to make you giggle.  Whoever you are rooting for on Super Bowl Sunday, have a great game!

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To Shower or not to Shower-that is the MS Question

Another multiple sclerosis dilemma

 

Don’t be gross.  It was a wedding; of course I was going to shower.

And no, it wasn’t MY wedding.  Seems in order for me to have a wedding I would have to find a groom somewhere.  And that just sounds really, really exhausting.

But yes, for my friend’s wedding I would shower.

And put on makeup.

And attempt to do something with my hair.

The question became, when would I do all that?

For most people, this would be a question quickly answered, maybe not even questioned at all.

But for people whose brains don’t always work the way we expect them to, issues like this can be overwhelming.

Serena and Joel, aka Bootsie (if you have read my book, MS Madness! you may remember Serena’s boyfriend Bootsie,) were tying the nautical, marital knot.  (Had to throw nautical in as the groom is a fisherman.)

 

The wedding was being held at a very busy hall and thus, could only be decorated on the morning of the 2PM wedding.  My friend Lynn and I agreed to help the maid of honor and her friend get the hall ready.

We were due at the hall at 9:30 and the church was over a 30 minute drive away from where Lynn, the hall and I all lived.

(We East Coast people measure traveling distance by time, not miles.)

 

Since decorating a hall can be sweaty and messy, my plan was to help decorate for two hours and then go home to shower and attempt to make myself pretty.

The day before the wedding the bride asked if Lynn or I could load up our car with decorating stuff and guest favors.  Being an eager beaver, I agreed before Lynn had a chance to.

It was after the bride and groom had loaded my car that I remembered that my trunk leaks when it rains.  There was no rain predicted that night but with my luck there would be an unexpected deluge and wedding items would get soaked and float away.

I called Lynn and we loaded up her car which was a good thing as we had time to talk before the big day.  And as we talked, she reminded me of the huge festival taking place between where we lived and the church which would likely add at least an hour to our travel time due to heavy traffic.

 

“So I’m thinking I’ll just get ready before we decorate and then go home to quickly change and freshen up,” she said.  “That way there will be plenty of time to get to the church.”

That was not my plan.  I was going to decorate and then shower and then put on makeup and then style my hair.

But now I was worried about the time too.  If Lynn, who as a working mom has for the last several years gotten up early and quickly gotten herself and her daughters out the door every school morning before 7:30 didn’t think she had enough time to get ready after decorating, then how could I possibly have enough time?

 

MS makes me move much slower than I used to.  And since makeup is not a daily thing in my life, I need a lot of time put it on, with time to wash off the makeup mistakes I make in the process.    Maybe I should get ready before decorating?  But then it might be hard to get myself together again.  My makeup could wind up all melty and gross looking and my hair would likely be useless.

This became a big question.

I analyzed my options over and over.

I asked Lynn what to do. Maybe I should do what she was going to do?  She’s pretty smart and always looks nice so she must know what she’s talking about.

I asked my mom what to do.

I called other friends to ask them what to do.

I tried to look up what to do on the internet.  I couldn’t find anything.

All of this was silly of course.   It wasn’t my wedding so really, how much did it matter what I looked like?

 

It’s just that the brain fog that comes with multiple sclerosis can make even simple decisions hard to decide.

And combine that with a big event like a wedding and then throw in a troublesome event like a huge congested festival and it can be very hard to figure out.

So after tossing and turning I decided I would just get ready twice.  I would get ready before decorating and then if I couldn’t fix what fell apart then I would just get ready again.

And so, in the morning, I showered, put on cosmetics, and sprayed hairspray, lots of hairspray.

 

Which was actually a huge issue because as we waited for someone to unlock the doors to the hall, I was followed by a huge bee who really, really liked my hairspray.  My hair wasn’t even sprayed into a beehive but it didn’t matter, that bee was in love with my hair.

I survived.  And so did the bee.  I couldn’t kill him as I have heard bees are our friends and we need to protect them.  Plus, I am too wimpy to kill a bee.

We helped decorate and then Lynn and I each went home to get dressed.

And to re-do makeup.

And to redo hair.

 

And to add more and more hairspray.

And to worry about the ozone layer due to all the hairspray.

And somehow, I made it to the church on time.

When MS makes decisions hard to decide I sometimes find myself chilling out about the little things.

Less stress is good. In the end, I tend to get a little bit of an “aw, who cares? Life’s too short,” attitude.

Unfortunately, I only wind up thinking that after hours and hours of pondering.  One of these days I may just get the order right.

In the meantime, I just need to be glad for the big things.

Like, hey, my friend got married which is way, way more important than whether my eye liner was smudged or if I had lipstick on my teeth.

Especially since the one picture I took with the bride just happened to be under the handicapped sign.

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(So you’re not confused, the bride is the one in white.  I am the one unwittingly posing under the sign! Perhaps the sign says it all?)

                               Congratulations to Joel and Serena!

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The Motley Two Go to Motley Crue

Multiple Sclerosis meets heavy metal

 

Ahhhh, there’s nothing like a good old summer head banging concert to remind you that you have multiple sclerosis.  Or that you are getting old.  I can’t tell which.

Too often the things that make me feel old could either be signs of old age or signs of MS.  Like the horror that arose when the radio station outside the concert doors asked me a Rolling Stones question and I GOT IT WRONG!!!

There is something completely inappropriate about that.  Yes, my MS brain does face cognitive challenges and memory loss issues but not remembering the answer to an awesome Stones trivia question??  I think it’s time to redo my MRI to find out what’s going on there…

 

(In case you’re curious, the question was which Stones single was the first to hit #1 in the UK?  I said Come On and I was wrong.  If you are dying of curiosity and just can’t stand reading any further without knowing the correct answer then here you go- the first #1 in the UK was It’s All over Now.)

But I greatly digress-another symptom of both MS and old age.   The saying goes that “my MS is not your MS” and thus it would be wrong for me to say that heavy metal music is not conducive to those with multiple sclerosis.  Maybe some of my MS friends enjoy the extra amp power, screaming vocals and battling bass that make up this music genre.  Maybe you even find that the commotion that roars out of the intense drum kit comforts you.  If so, then you, my friend, are weird.

 

Yet, I found myself at an Alice Cooper/Motley Crue concert last week which is about the last place I pictured myself being on that Sunday evening.  I went because my dear friend from forever has loved Motley Crue since we were little kids playing air guitar on tennis rackets we didn’t know how to use.

Serena had never seen them live and since they claim this is their final tour, she bought two tickets.  With the craziness that comes from August, she couldn’t find any other metal heads available to go with her.

A concert is a concert and I AM a classic rock chick.   I decided to offer to go that way my friend would have company and could treat herself to a drink or two and I could be her designated driver.

Even though we’re close friends, Serena and I are very different.

She is wild and I tend to be calm.

She’s impulsive and I’m cautious.

She’s  shameless; I’m shy.

She’s spicy; I’m sweet.

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She’s crazy in a fun way; I’m crazy in an “annoying pain in the butt” way.

On paper we are as different as different can be.  Yet, we work.

We are a motley duo.

When we arrived at the venue, my first aging/MS frustration took place right in the parking lot.

I had more concert experience than Serena and in her excitement, and my ridiculous fastidiousness, we arrived super early.

Which would’ve been fine if I remembered tailgating.

How could I have completely forgotten that part of the rock concert experience?

I didn’t want to just sit in the car and so I ventured out to be social.  I talked to a family in the car next to us-their pre-teen daughter had grown up on 80’s hair bands.  The second frustration then occurred.

Without preparing for tailgating, I was standing outside of the car and standing for me is not very comfortable.  Plus, in front of our car was a pickup truck with 5 good looking guys hanging around it and they weren’t talking to me!

 

They weren’t rude and thanked me when I caught their fly away shopping bag, but that was it.  No flirtations.  No offer to sit on the bed of their truck.  No innocent conversation.

When had guys stopped wanting to talk to me?  It was depressing.

Some may say that perhaps I should have started talking to them and that by my being shy, they might not have known I was up for being social.  Serena could have fixed this issue in a heartbeat but still in the car, she was very busy.

She was worried about security not letting her make the most of her Motley Crue experience and was thus in the process of concealing important items in her bra.

To say that Serena is well endowed is like saying Motley Crue plays soft rock. (Serena’s favorite metal edged ballad Without You non withstanding.)  Endowed just doesn’t cut it.

 

She was working on a tip her daughter had given her,

“The good thing about having big boobs is that you can use them to hide stuff.”

By the time I gave up on visiting and got back in the car, Serena had managed to stuff 2 Vodka Citron nip bottles, a full pack of cigarettes and her camera all into her bra.

And you couldn’t tell!  Even me who has known her forever couldn’t see any evidence.

I panicked  when the female security officer said she was going to pat her down, but Serena didn’t even blink.  And then we were in.

There was a lot of standing,  Standing to get in.  Standing to get patted down.  Standing in the bathroom line which of course, was crucial!  Standing to get beverages…Standing to watch the bands.

 

At this particular arena when everyone stands, you can’t see a thing, not even on the close up screen which is so low to the stage it hardly seems to help.  It hurts to stand too long and so I had to periodically keep sitting.  I did my best but missed a lot. But I could guess what was going on by the rhythm of the butts seat dancing in front of me.

It wasn’t long before I had to down two Aleve tablets and pull out my bright pink ear plugs.  Why bright pink?  I was pleased to see other people with ear plugs but only mine were bright enough to light up the stadium on their own.

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At one point the band appeared on a smaller stage close to us and it was all I could do to stay upright as Serena jumped over me in her sprint to get to Vince Neil– think teen girls rushing the stage when the Beatles hit America.

How did this particular concert make my friend younger while it made me older?  Achy feet, achy legs, and achy ears.

At least I wasn’t whining about the temperature…..”I’m cold, can I borrow your sweater dear?”

But here’s the thing; though Motley Crue is not my kind of music, and not very MS friendly, in balancing things out, I did manage to have some fun.  I got to see flames shooting out Nikki Sixx’s guitar and Alice Cooper get his head chopped off in a guillotine, both of which were pretty cool.

 

And I did manage to seat dance all through Smoking in the Boys Room, even if it wasn’t quite as energetic as I seat danced at the last Stones concert.

And most importantly, my friend loved it.

I can tell by the hundreds of videos of the concert she’s posted on Facebook.

(Hide your camera in your bra friends-it’s the only way.)

Funny how a Motley Crue concert, like life and even life with MS, can play out when you balance, seat dance every once in a while, and rely on friends.  Relying on friends is key.

 

When I texted my Stones friend about the epic fail trivia question she pointed out that Come On was the first Stones single to chart in the UK even though it didn’t make #1.

Which helped me to feel better about being old and missing that important answer. At least I was close.

Yes, MS or no, friends help keep us young

Especially the wild ones….

 

 

A Zombie Goes Down the MRI Tube

Are you an MS zombie too?

Earlier this week, someone posted the above picture in one of my Facebook MS groups.

(Sorry, fellow MS’er and poster.  I didn’t want to steal your pic but I really liked it and was desperate for a blog post idea.)

I laughed out loud at the picture and immediately commented that I loved it.  Some of my fellow MS friends agreed.

Some did not.

They respectfully brought up the fact that images like this one can diminish MS, appear to make fun of MS or give people a false sense of what we go through.

I had never thought of it this way and since I respect all opinions, and have a tendency to ponder, I sat with the opposing opinions for a while.  I sat with them right into the next afternoon as I was about to get my 25th MRI.

 

(Kidding- I haven’t had that many MRIs although it often feels like it.  If it really was my 25th I would be expecting a big present from the technologists.  I think the 25th anniversary is silver which the technologists could NOT give me as no metal is allowed in the MRI room.  Damn, MS got me again!)

Anyway, I did get a little surprise at my MRI place-I have no idea what the official name is- as they have added music to the MRI experience.

People had told me over and over that they have been able to listen to music during their MRIs but I didn’t believe them.  I figured they were just trying to make me jealous.

 

But apparently it’s true as I was able to listen to music during both days this past week when I was stuck in the tube.

In the room where they have you change into scrubs- mine were a pretty blue, I would have taken them for a present but they wouldn’t let me-there’s a list of the artists you can listen to amid the knocking and whirring of the machine.  They had about 30 artists to choose from including Johnny Cash, Andrea Bocelli, Abba, Beyonce and John Cougar Mellancamp.

I do have one complaint amid the musical praise- there was no Rolling Stones!  How could that be? A selection of music not including the Stones is like leaving a huge gaping hole in the list, like a missing puzzle piece.  Like a puzzle of the United States with the Texas piece lost. It just isn’t complete!

 

Anyway, I chose Tom Petty.  The technologists got me all settled and scrunched into the machine and then started the music.  The first song was one I had completely forgotten about, Zombie Zoo.

How perfect since zombies were on my mind.

You can make a big impression or

Go through life unseen

You might wind up restricted and over seventeen

It’s so hard to be careful, so easy to be led

Somewhere beyond the pavement

You’ll find the living dead

Dancing at the zombie zoo

Painted in a corner and all you wanna do is dance down at the zombie zoo

Tom Petty

Perhaps you’re thinking that the above song has absolutely NOTHING to do with multiple sclerosis.  You would be right.  Unless you happen to be in an MRI tube already thinking about zombies.   Then it all makes perfect sense.

Maybe the zombie zoo is an MS mixer or fundraiser.

 

And we MS’ers really can make a big impression.

And it is so hard to be careful when you have MS.  Between fatigue, brain fog, diminished vision, and balance trouble it is very, very hard to be careful.   Sometimes you do want to be led.  Just sometimes.  Other times being led can annoy the crap out of you.

Zombie Zoo stayed in my head while other Tom Petty songs played.  Don’t even mention Free Fallin- that’s an MS song for sure.

Right about the time they rolled me out of the tube to add dye to my veins that would light up the MS activity in my body sharper than the Vegas strip- instead of flashing Penn and Teller, $9.99 buffet, Texas Hold’Em, these lights in your body scream- multiple sclerosis, t1 lesion, t2 lesion, and my favorite- MS was here….

 

To get my mind off zombies I asked them to change the music to Pink.  I forgot why I love Pink.  I love her because her music gives me energy and makes me want to dance like a crazy person- not a good idea when you are stuck in a tube and the technologists are yelling at you to stay still.

So what could I do? I went back to thinking about zombies and the Facebook zombie picture.

I decided that to each his own.  If some of my fellow MS’ers don’t like the picture, that’s ok.  But I do.  Here’s why.

Zombies are frightening but not real.  MS is frightening and it’s very real, frighteningly real.

If I want to compare the two by my shuffling gait, my extreme brain fog, or my incredible exhaustion, and if by comparing the two it makes me laugh, then so be it.  Life is too short and when we can grab a laugh, awesome.

 

I guess it’s like when I hear a joke about my Portuguese ancestry.   I will likely laugh out loud. Unless someone who’s not Portuguese is telling it.  Then I’ll probably get mad and pour a pot of Portuguese soup over their head.

(I would never actually do that.  It would be a waste of some good stuff.)

Back in my 20’s I went to a Halloween party dressed as a black magic woman.  The party was scary.  The house where it was thrown was scary.   This very scary guy came up to me and said “you really shouldn’t mess with things you don’t understand.”  Since he said it in a super creepy way, I grabbed my friends and we bolted to the nearest dive bar for safety.

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So I don’t mean to tempt fate by talking about zombies.  If the zombie apocalypse ever does happen I will be the first one hiding and screaming.

But sometimes, just sometimes, comparing my frightening illness to a make believe zombie is funny.

And it makes me feel better too.

I hope it’s the same for you.

And if so, perhaps I’ll see you- dancing at the zombie zoo….

 

The Noisy Bed, Rated G

A multiple sclerosis staycation

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Last week, EMD Serono/Pfizer invited me and nine other MS bloggers from around the country to a summit. They wanted to pick our collective MS brains about MS blogger things.

It was an honor to be included among this talented and eclectic group, a bunch of folks as different as our own personal MS symptoms. EMD Serono/Pfizer wanted our brains in the best possible MS blogger working order and so they put us up overnight. As the closest to the summit headquarters I was able to drive to the event. My other new blogger friends flew. In airplanes that is, MS has not yet given us the ability to fly although one never knows what the future may bring.

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This was a bit of a staycation for me. The fatigue of my MS, (as well as the cost of living with a chronic illness,) makes an actual vacation somewhat difficult. I am able to travel to visit family but the energy expended on those trips goes to chasing my little nephews, not to sightseeing.

Anyway, arriving at the summit I checked into the super nice, super clean hotel room reserved just for me. I was impressed. It’s not often I am treated to such a lovely extravagance. The bed was huge and looked super comfy, topped with a ton of soft pillows I would not have to worry about putting back in order in the morning as I was in a hotel, not my own home-sweet.

After putting down my bag I ventured to check out the place and sat in the lobby for a while. There I met a fellow blogger who also had recently arrived for the summit. How do MS bloggers recognize each other as fellow MS bloggers? Is there a magic sign? Canes help, as do the long lines to the lobby restroom.

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But I recognized her by her forearm crutch and she likely recognized me by the confused, brain fogged expression that seems to be on my face even when I am having a “with it” kind of day. Turns out we knew each other and had communicated online. We chatted and then we each went up to our separate rooms to get ready for the planned banquet.

At dinner, which was delicious by the way, I sat among some of my fellow bloggers, some with companions, some not and we got to know each other. What do a group of MSers do for laughs over dinner? Tell bladder jokes, of course!

It started with the competitive me proudly announcing that I was the first to need the bathroom. I was hoping there would be a prize for this. Unfortunately one of my dinner companions announced he had already gone, twice, so I lost that game.

From there, bladder jokes followed. I’m proud to say we were the most raucous table in the room. But after dinner I began to fade.

Although I had only driven to the event and everyone else had dealt with airplanes and missed connections and long hours and taxicabs, I was the most beat. Many of the group wanted to head to the bar to chat some more but I wanted to go to bed, my nice, huge, soft bed. Even among MS lightweights I am a lightweight! I said goodnight and left the group. I think most of them called it a night too- we MSers often have great ideas but teeny tiny reserve.

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I checked some emails, changed into pj’s, pulled out what I would wear to the summit so I could get ready quickly in the morning, and climbed into bed.

There was a noise.

I ignored it.

It didn’t go away.

I buried my head under all those super soft pillows.

I could still hear it.

I figured I was so tired I would just sleep right through it.

I didn’t.

I figured putting the TV on would drown it out.

It didn’t.

I buried my head under the covers and under all the pillows to muffle the sound even more.

I could hear it still.

I told myself that if I stopped thinking about it, it would go away.

The more I stopped thinking about it the louder it became.

I got up to see if the sound had anything to do with the heating system, something I could control.

It didn’t and I couldn’t.

The sound was like a particularly obnoxious motor, motoring sounds being particularly difficult for me. I have complained about weird ear noises with my MS since before doctors knew MS caused weird ear noises. Was I imagining this horrible sound?

I was reluctant to call the front desk for fear of two things- what if they couldn’t hear it because it was all in my head and what if they moved me? I was in pj’s and my clothes were unpacked and all laid out. I didn’t want to move. I just wanted to sleep before the big day tomorrow.

The tossing and turning went on for three hours. At 1AM I called the front desk and they sent someone up. He didn’t hear anything. He offered to help move me. While I repacked he did admit there was a generator outside of my window and that could be the noise I heard.

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As we walked to a new room on the other side of the building he also told me he was hard of hearing! Oh, and he worked near the generator all the time so he had gotten used to the sound.

The new room was just as lovely and I again unpacked and crawled into the second super soft bed. It was quiet. NOW, I could sleep.

Except I was wired. I thought maybe TV playing softly in the background would lull me to sleep. I got up and grabbed the remote. Back in bed I realized the volume was too loud. I picked up the remote to turn it down. The batteries were dead. I got up and manually shut the TV off. And sometime after 2AM I drifted off to sleep.

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Here is a picture of all of us at the summit. It might be hard to recognize me so let me help you. In front, see the beautiful, fashionably dressed black woman on the scooter? I’m next to her, wearing purple and what I THOUGHT was a slimming outfit.

At the summit the next day we were asked to list what gives us strength. On auto pilot from the events of the middle of the night I listed my strengths as God, humor, family/friends, and the Rolling Stones.

 

As the day wore on and our collective and usual MS fatigue combined with the after the delicious lunch fatigue, all of us entered a slight brain fog state. Still, we did our best and I hope the company found useful information sprouting from our foggy brains.

The thing was, as tired as we all were, we didn’t want the day to end. As it did, we found ourselves lingering, chatting and exchanging info. As beyond exhausted as we were, we didn’t want to say goodbye.

So here is what I learned from the EMD Serono/Pfizer MS Summit. When I listed my strengths, my brain wasn’t just meandering through the autopilot zone. My strength that day came from my awesome new friends. This little group who became family through a weird genetic trait of happening to be MS bloggers, managed to hold each other up as we got to know each other. Zombie brains, scooters, crutches, canes, and all….

For you friends, here are the excellent websites/blogs represented by this incredible group. One is so spectacular it doesn’t even need mentioning- www.yvonnedesousa.com   haha!

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Here are the nine others- in no particular order except the order in which we sat during the summit. Please check them out!

My New Normals

Inside My Story

Brass and Ivory: Life  with MS and RA

MS Views and News

Managing MS

JonChandonnet.com

Ms Lisa Says

MS Fitness Challenge

Active MSers

 

 

Image courtesy of foto76/FreeDigitalPhotos.net

Image courtesy of Gualberto107/FreeDigitalPhotos.net

Image courtesy of Suat Eman/FreeDigitalPhotos.net

Image courtesy of Stuart Miles/FreeDigitalPhotos.net

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Image courtesy ofsurachai/FreeDigitalPhotos.net

Too Many Steves

Multiple Sclerosis in the dating world

 

*****The names of the males in this blog post have been changed in order to protect my reputation****

I was talking to friends about the need to change some names while editing my book. I told them that one of the names I had to change was that of my most recent boyfriend, who was also one of the two loves of my life.

(Is it ok to have two loves of your life, maybe three? Especially if one was your very first love way back in high school and into your early twenties. There is that love of my life and the most recent guy and “one who got away” guy. That’s all. Just those three with some problem guys, no way guys, and “what on Earth was I thinking” guys in between.)

 

Anyway, let’s call this guy, the recent one, John. Since I haven’t talked to John in a while and so could not get his permission to use his real name in my book, I had to change it. I changed it to Steve, thinking Steve was a good name. I told my friends that I came up with the name Steve as I had always had a little crush on a guy named Steve Smith.

“But isn’t it weird to give John the same name of a guy you dated?” Serena asked.

“I didn’t date Steve Smith,” I replied. “I just had a crush on him.”

“No, not Steve Smith. But you dated Steve Jones. Remember Steve Jones???”

Serena was right. Not only had I dated Steve Jones but I had actually lived with him for a bit. My MS brain completely forgot about a total relationship. It wasn’t a terrible relationship either. It was actually a fun time in my life. How could I have forgotten all about Steve Jones?

 

This was very concerning. Memory loss with multiple sclerosis is very common. But forgetting an entire relationship was on a whole other level. MS has contributed to making my dating life pretty much non-existent. If it starts erasing memories of the social life I used to have, then what will I do???

Being single is one thing, but having always been single, especially if you weren’t? That is just way too much.

People ask why MS has affected my dating life. The simple answer is the fatigue. No matter what people say, dating takes work and work is exhausting. And since I am already pretty fatigued all the time, I feel like a zombie.

 

I’m not picky but I am not sure that it would be good idea to date someone who wants to date a zombie.

Who do zombies date anyway? Not vampires. Zombies don’t have much blood and what little blood they do have is filled with interferon and other meds. Not a good match for a vampire.

A werewolf? Do zombies date werewolves? That seems pretty hairy to me.

 

On and on the thinking goes and just like that, I am even more exhausted just thinking about dating.

But in case you think I am bailing on this dating thing too early, let me give you an example. I was invited to a social gathering, a party if you will. With my first glass of wine in hand I started talking to a guy as it turned out we had something in common. We talked about what we had in common. Then I realized we were talking!

I didn’t know this guy’s story. He was about my age but was he single? Nice?

I started to think too much. My legs started to hurt from standing there talking to the guy. I started to panic and with only two sips of wine, the panic was not subsiding. Should I continue to stand there and gulp down wine while I attempted to continue this conversation?

 

It seemed too much. Getting ready for the party had been tiring enough. What I really wanted was a nap. I couldn’t take the stress. And since stress is not good for MS, I ran away from the guy into the lawn chair in the middle of my safety net- ie, the people who had invited me to this shindig in the first place.

Fortunately, the chair happened to be right near the table holding all the wine.

Then I proceeded to beat myself up for running away and hence, just gawked at the guy during the whole rest of the event. That, of course, made him think I was a weirdo. I prefer the term zombie.

Fast forward several weeks and I get invited to another shindig. I find a table with friends and high chairs. I am mostly through my glass of wine when I realize that a guy I recognize from my party days happens to be standing directly behind me.

This was a somewhat fancy event and I was dressed up a bit and had actually put on some make up. Girly girl make up, not zombie cover up.

 

I was sitting, felt giddy with the wine and decided I would not repeat my mistake from the last social event. I re-introduced myself and the guy and I chatted for quite a while. He was there alone and I wasn’t panicking. I could do this chatting/flirting thing.

Someone called to him and he moved away. Eventually I moved away from the area as well and then it was time for my friends and me to leave. I didn’t talk to him again but felt confident that I had taken a step forward, moved out of my “destined to be single forever” shell.

Then I caught a glimpse of my reflection in the car rearview mirror and realized I had a bit of pesto from one of the appetizers stuck in my teeth. That made me re-analyze the whole pesto added conversation and I got tired all over again. I’m sure the wine didn’t help. I went home and, you guessed it, took a nap.

So you see, dating is very fatigue inducing and stressful to me and my MS. I don’t really mind being single as I have had a pretty fun and interesting social life in the past. Which is why I need to remember it and why forgetting Steve was very traumatic!

Luckily, I had Serena to remind me. That’s what friends are for.

At least until I find me a zombie.

I will name him Steve.

***I take this blog writing gig very seriously and always try to research what I am writing about. Turns out, there is a dating site for zombies! Who knew? If you know a single zombie looking for love please direct them to ZombieHarmony. Their tagline is “because the apocalypse doesn’t have to be lonely…”

 

***Further research shows that the site is no longer active. Guess all the zombies have been matched.  Damn.

***For observant readers interested in my future book, you read right. I am editing away. The goal is for the published (still unnamed) work to be released just after the New Year. If the apocalypse doesn’t get me first…