Gina Blue is Disabled Too

A chronic illness companion

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My car and I go back a long way, 10 years to be exact.  She was a pretty, blue, 2005, used Toyota Corolla that I bought in 2004.

No, that is not a typo or a result of MS brain fog.  Weird as it seems, the 2005 cars came out early that year and someone bought her right away.  Then they decided that they didn’t like her and returned her to the car place!

Like me, too many times to count, my little Corolla faced rejection early in life.

But I loved her and scooped her up!    She was clean, smart, not too fancy and not too terrible looking; more cute than beautiful.  I didn’t want a flashy vehicle.  I didn’t need something gorgeous that would be too much trouble to keep up with.

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Sure, I could have invested in a Lamborghini or a Ferrari- not really, I could barely afford the Corolla- but I fell in love with blue simplicity.

Previously I owned a blue Dodge Neon that my friends said I should name. So I named the car after my fake id- calling it Gina Blue.  But it never really stuck.

I tried the name out on my Corolla too but it also didn’t fit. It makes for a fun blog post name though.

It seemed easier to just call her my car or my baby.

She was absolutely perfect!

For one month.

Then, just before Christmas that year I made the mistake of parking her under a big tree during a freak winter windstorm.  While I hummed carols and mailed off Christmas cards my auto baby became disabled when the tree collapsed on her.

Disabled- having a physical or mental condition that limits movements, senses or activities.  Google

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Her roof caved in and her frame was badly bent.  It was a frightening scene.   She needed major reconstructive and cosmetic surgery.

I took her to an auto body place so they would make her perfect again but she was never the same.  She had received a traumatic injury that would haunt the rest of her days.

I was shocked that she couldn’t be healed completely, especially since the auto body guy I took her too was incredibly handsome- how could he not fix her completely?

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Before you freak out, I didn’t pick his shop because he was gorgeous; it was just a nice plus when I dropped my baby off and came to visit it from time to time while he was working on her.

Several years later I had to take her back to the shop as her paint was peeling.  And a couple of years after that it started to peel again.

This time I decided to leave her be. I didn’t want her to think that I loved her any less now that she was covered in chipped paint.

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Here is the point of my sad tale- You know how they say people start to look like their dogs or their dogs start to look like their people?  Well, I’m convinced that my car is starting to look and act like me.

She received her big traumatic incident right before Christmas.  I received my big traumatic incident (my MS diagnosis) right before Christmas five years later.

The summer after my diagnosis, the heat and humidity made me very sick.  And my car got sick too!!!!

When I took her to a cute mechanic he said the heat just got to her.  He was wrong.  One month later the part that he replaced was the subject of a recall and Toyota sent me a big check.

This should be a lesson- no more good looking car guys touching my baby.

Engineer logo.

Five years have since passed and I’m still kicking.  I’m slower, have unpleasant symptoms, and am definitely showing my age.

But my car is too!!!! Her paint chipped spots have grown and some have turned to rust.  And now she has sprung a leak! Two leaks actually.

(Yes this reminds me of MS bladder problems. No, I have not yet developed leaks, thankfully.)

Chronic illness-  a condition that is persistent or otherwise long lasting in its effects.   Wikipedia

I took her to a new auto body place and a new auto doctor and was told that he can try to do a simple fix but if that doesn’t help her, she’ll need major, expensive work.

(Hmmm, kind of reminds me of what my neurologist told me about my fatigue and mood swings at my last visit.)

And like a busy specialist, this car doctor can’t treat her for two weeks.  And we have a rain soaked Nor’easter heading our way…

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My poor baby.  I have no way to protect her. The most I could do was try to help her through this exacerbation until she can get the help she needs.

I covered her seats with plastic garbage bags and then opened two umbrellas under her weak spots to catch the dripping water.  I know opening an umbrella in the house is bad luck- hopefully opening an umbrella in a car is good luck?

She looks very uncomfortable.

I worry how she will weather this latest storm.

I worry how she’ll feel after her next auto doctor visit.

I worry how I will pay for it.

I worry about the fact that this latest car doctor is older but still handsome- will she be in better hands with an older car doctor?

I do cringe when society focuses on looks and so I know better than to have that as a factor in deciding where she should be sent.  But this is my very own baby we are talking about and the previous cute doctors have been a bad omen.

There was nothing I could really do but wait and worry and hope she does ok.

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While I was waiting and worrying there was a knock on my door.  My friend Serena and one of her daughters had arrived with a surprise gift to cheer me up- a funny t-shirt.

Yes, a shirt has nothing to do with a troubled car.  But it reminds me that when you are down and out, your good friends can help pull you through.

And my car has a good friend, a total bestie, me!

Together we will get through this latest symptom she is facing.

Together we can weather any storms: rain, fatigue, new symptoms, injections, MRI’s whatever they may be.

I just hope that a bumper sticker, rather than a t-shirt, will cheer her up….

survive bumper sticker

 

Guess What!  Guess What!  Guess What!!!  The Multiple Sclerosis Association of America has given MS Madness! a shout out in their latest edition of The Motivator!  Check it out here!  And please check out the rest of this awesome publication while you’re at it…..  The MSAA rocks!!

The Motivator

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Decisions, Decisions

Another up close, in depth, comprehensive look at “cog fog”

I tried to catch some Fog.  I mist.  Anonymous

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One of the gazillion frustrations of life with MS is trying to explain “cog fog,” also known as brain fog.

I once had a neurologist tell me that if I can’t explain it, then it must not exist.   Even in the brain fog moment that I happened to be in at the time, this comment didn’t seem to make sense.

Isn’t that the very point of brain fog?  It makes things hard to think.

It makes things hard to describe.

It also makes things hard to decide.

Brain Freeze

So even though today my brain is the foggiest it’s been in a while, I decided I would take a moment to try to describe “cog fog.”

See what I mean about decisions?

One cognitive difficulty for me is simple math. Math was never my deal, MS or not.

All I remember about my high school math classes is that one teacher was always covered in chalk dust and the other took points off if you turned in a page ripped from your notebook that still had the little squiggly pieces attached from where you ripped it.

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I talk about my ongoing math issues more in a former blog post MS Counts.

And I recently talked about how when MS takes over your brain sometimes even the most basic of decisions seem impossible to work out, To Shower or Not To Shower-That is the MS Question

MS can make me easily overwhelmed and every factor imaginable takes over when trying to decide something. Another frustration of “cog fog” is that it can often frustrate others, especially when I need to combine it with numbers and decisions.

Here are some things that my MS brain makes difficult in my life and that are hard to explain to those who find it weird.

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Making coffee-   This should not be a big deal as I don’t even drink coffee.  Put some hot water and a tea bag in a mug and I am good to go for the day.

The problem comes when I have to make coffee for someone else.  Many people have tried to show me how to do this and I can never remember the coffee scoops per water ratio.

Sure, I could write it down.  But where?  How will I remember where I have written this information down?

One might suggest that I just read the directions on the back of the coffee container.  But those directions offer variables- for stronger coffee do this, for a larger pot, do that.

How do I know what is a large pot and if my guests want their coffee stronger or weaker?  Why can’t they just drink tea like the rest of the world?

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Multiple email addresses-   Whenever someone changes their email, or gives me a second or even third email address, I’m lost.  Not to mention the fact that my email server keeps changing the rules.

So what do I do? If I have to send an email I will send it to all the addresses I have for the person.  This causes them to get several emails and get annoyed with me.  I’ll ask which address to use and they will send a response like, “this one, this one’s the best.”

Well which one is that?  My computer just puts your name in the address bar so I still have no idea which is your preferences.

Or, to get back into the decision thing the person might say “I just use this one for work,” or “I just use this one for fun stuff.”  Now I have to decide if what I am emailing is fun or not and then go back to trying to figure out which email address is which.

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Keys- My dad recently picked up my key chain and wanted to know why I had so many keys and what were they all for. I had no idea.

I started to try to figure it out and just got overwhelmed. One clearheaded day I actually started locking and unlocking stuff to try to further investigate.  And then I got confused again.

I went to the hardware store and bought those little color tabs you can put on keys to signify where they go but of course, I can never remember which color is for which lock.  I can write that down but where- on my keys?  That certainly would make it easier for the burglars.

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Gratuity- The best example of how brain “cog fog” can mess with an MS’er is tipping.

Generally I’m a nice person who wants to be generous.  I waitressed one miserable summer and even though I was super klutzy and lousy at it, (I choose to blame that on MS even though it was 20 years before my diagnosis,) I appreciated a good tip.  And I’m not cheap.

But if I go to a restaurant with someone the words I dread are “I’ll get this, why don’t you just pick up the tip?”

Why is this tough?  First you have to remember the going tip rate- 18%, 20%, 25%.  Then you have to do math.

Then you may want to account for the variables associated with a range from lousy service to wonderful service.

(I may be nice and I would never stiff a server but if you are rude you are getting the minimum tip: unless of course I screw up which is likely.)

Flo

Then, because it’s not cool to leave change, you round the tip off-more math.  And more decisions- should I round up or down?

To help combat this particular frustration I got myself one of those tip cards.  So if I’m in the tip paying position I will pull out my little card.  And it helps, if I can read it in the dim light of the particular establishment I happen to be at.

But often, my companions object to the card.

“You don’t need that to figure out the tip- just round off the bill, take 20% and then lower it slightly.  Oh wait, he was really nice, raise it a bit.  Do you have enough singles?  It’s not cool to leave change, even quarters. Oh wow, that’s a really generous tip, did you mean to leave 40%?”

It’s enough to make someone never want to go out to eat.

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But the confusion doesn’t end there.  It pops up again with hairdressers, taxi drivers, delivery people, the kid who pumps your gas, and on and on….. I swear I gave my hairdresser a 60% tip last week.  No wonder she loves me; it has nothing to do with my wavy hair and sparkling personality.

In the grand scheme of life, none of these cognitive difficulties are that big.  And when you put them in the context of the grand scheme of multiple sclerosis, they’re even smaller.

But still, when you need a way to describe what can’t be described, here you have it.

At least, I think this is descriptive…

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Portuguese Soup with an MS Twist

A multiple sclerosis culinary event

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It was a privilege growing up Portuguese, especially when it came to Portuguese food.  Portuguese delicacies are awesome.

What?  You don’t believe me?

Trust me.  I have way too many extra pounds on my 5’3 frame to prove it.

We Portuguese folks have our own veggie soup and even I, the self proclaimed arch enemy of vegetables, love it.

Of course, my ancestors taught us right; we load our veggie soup up with sausage so it doesn’t taste like a veggie soup.

But it totally is!  It has carrots, potatoes, onions and kale, the super food of my people.

For more information on this please see my prior post titled, Kale, the New Frontier.  

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Some people put tomatoes in their soup to make it even healthier and the soup also has lots of beans which offer protein and fiber.  I’m telling you, this soup is good stuff!

And depending on how involved you want to be, there are many different ways to make it.  Some people go all out, growing their own veggies, raising, slaughtering and smoking the sausage themselves and soaking the beans for days.

Before MS, I actually learned to make this soup and I must say, it came out pretty good.  (I personally didn’t slaughter anything though..)

But no matter what the experts say, cooking with multiple sclerosis is hard and shortcuts are often needed.

So I was thrilled to discover a recipe that made the soup process much easier.  Instead of using salt pork for flavor, (I have bought salt pork before but don’t know what it is and am not sure I want to know,) it uses bean and bacon soup.  Soup for your soup?  How incredibly convenient!

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Many Portuguese people I know would disown me for using this version but we just won’t tell them.

The problem was, I needed even more shortcuts.  Chopping and peeling are particularly hard for me and so I dared to wander down the canned veggies aisle of the supermarket and was thrilled to discover that potatoes and carrots come in cans!  I scooped them up.

That meant I would only need to wash the kale-take it from a Portuguese person, you really have to wash the kale well.  It’s so good that bugs just can’t resist it.  Now if you are cooking broccoli for some strange reason you probably don’t need to wash that at all.  It’s so gross even dumb bugs stay away from it- chop the linguica (mine is a linguica family, I think the chorizo people are from the islands,) and chop the onions.

Well, one onion.

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Chopping onions was really hard for me and so I only use one in my version.  I knew I was saving myself a ton of work.

Mid-afternoon I started washing the kale.  Washing kale should not be that tiring but when you have MS, everything is tiring.   Since I needed to stand at the sink, my legs started to ache during the washing process. I set the kale aside to dry and then rested for a bit.

Next, I opened my cans of veggies.  But with weak, achy fingers, that was an exhausting task too.  And so I rested some more.

Next I started to slice the linguica which wasn’t hard at all.  And since by then I was pretty hungry, it was a fun chore. Slice, snack, slice, snack-oh this slice is uneven, better just munch on it now.

I hadn’t even started cooking the soup yet and it felt like I had been working on this recipe for days instead of an afternoon.

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I saved the worse task for last- the onion.  I pulled out the sharpest knife I could find, which is incredibly dangerous even in the best of circumstances.  Not the wisest move when being used by somebody whose hands have a tendency to randomly drop stuff and throw things across the room.

I sat at my kitchen table and carefully started to chop.  I have never been good at chopping onions the right way and have even watched cooking shows for tips.  Nothing has ever worked.

Soon my eyes stung and wouldn’t stop tearing and drastically uneven pieces of onion were scattered all over my table.  There had to be an easier way.

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This soup was good for me, mostly- the sodium and the sausage not so much- and I was making the easiest of the easiest of versions and yet I was still struggling.

Why does everything with MS have to be so damn hard???  Even a recipe I have been making for years and watched my mother make for years before that.

As I whined about the miserably chopped onion and felt sorry for myself, my phone rang.  It was my dear, supportive friend Heather who asked what was going on.  I told her my frustrating plight.  She had good advice,

“Yvonne, there’s no reason for you to chop onions if they give you such a hard time.  You can buy them frozen, already chopped.”

Her advice was spot on.  So spot on that I remembered hearing it before.  My mom had told me that many times.  So many times that it occurred to me that I might just have bought……

Sure enough, with Heather on the phone I opened my freezer to find a bag of frozen chopped onions, lying on top of a bag of frozen, prewashed kale; bags I had bought when the cooler weather had first started me craving my favorite soup.  Now my MS frustration was no longer about how I am not even able to chop an onion and get exhausted just rinsing fresh kale, but how it’s hard to even remember the shortcuts you have already designed for yourself.

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But, ahhh the soup was good, even with the canned veggies.

And the next time I make it it will be even better with canned and frozen veggies.

That time for sure, it won’t take too much out of me.  And, well, if it does, luckily kale soup goes great with Portuguese wine.

Even luckier, my dear, supportive friend Shannon bought me an electric wine opener!

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Friends, as a special gift to you I have included a link to Yankee Magazine where a Portuguese woman named Ruth O’Donnell published her version of the easy way to make kale soup,  Don’t let the Irish name fool you, she was of Portuguese descent. I swear that I put carrots and extra beans in my version- you can too.

And don’t be fooled by the part that says prep time is 20 minutes; it took me almost 20 hours!

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Getting Older: A Good Thing?

A multiple sclerosis guest blog by Jennifer Digmann

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Ahhh friends, autumn is here and I couldn’t be more thrilled!   The weather has been just perfect and I am so happy that I have been outside a bit, picking up some natural vitamin D.

I have been enjoying this time of year so much that I didn’t leave much time this week to write a new blog.  I was just going to offer up an oldie when new friends, Dan and Jennifer Digmann came to the rescue.

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I met Dan and Jennifer on Twitter recently, a social media site that I only moderately know how to use.  Luckily, Dan knows how to use it and he tweeted me about my blog and then I tweeted back and tweet by little tweet, I got to know him, his wife Jennifer and their awesome work.

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Dan and Jennifer have been married for 9 years and both are living with multiple sclerosis.

And while that seems like a huge cosmic cruelty to have both a husband and wife struck with this sucky illness, it was actually MS that brought them together.  They met at an MS event titled “Finding Your Buried Treasure.”

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How cool is that?  I bet neither expected their buried treasure to be a spouse.  I am officially making more of an effort to get to more of these events!

I have been to a few and have met many wonderful people but I have yet to find a husband at one- perhaps I am not looking hard enough?

Anyway, Dan and Jennifer totally rock!   They regularly write about their experiences on their blog on their own website       www.danandJenniferdigmann.com and on the website Healthline where they also blog.

Thank you so much Jennifer and Dan- so glad to have made your acquaintance.

For your reading pleasure, dear readers, please check out Jennifer’s thoughts on an upcoming birthday.

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Yum-cake!

 Getting older: A good thing?

by Jennifer Digmann

I turn the big 4-0 in less than forty days and there has been a doom-filled cloud following me for, oh let’s say, the last 320 days or so.

There is a daily countdown to the big day, November 6, on my refrigerator. This age has been hanging over my head because up until now, getting older always has been followed by a great life-altering event.

Think about it: you start driving when you turn 16; vote at 18; and drink (legally) at 21.

Even turning 30 was fantastic because that was the age when Dan and I got married, and it seemed my life really began.

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But I am a little more than a month away from turning 40, and I can’t stop thinking that it’s just downhill from here. Forty is just plain O-L-D, and so am I.

I posted this #TBT picture of Dan and me on Facebook a few weeks ago, and my aging was noticed. Our friend Michelle commented, “Look at those fresh, young faces!”

Ouch!

Normally, I probably just would have smiled and forgot about it, but being close to turning 40, the comment stuck with me. I’m not ready to get old.

Recently as Dan and I drove to our Multiple Sclerosis (http://www.healthline.com/health-slideshow/multiple-sclerosis) support group meeting, we talked about that subject. I was lamenting about getting older when he asked about my 30s.

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“Ah, such good times,” I waxed nostalgically. “We were married, moved into our house, I finished graduate school.”

“Yes, Jennifer, but what else?”

Whether intentional or not, I began seeing what Dan was getting at and began looking at my 30s through less rose-colored glasses.

“Well,” I thought, “39 hasn’t been all that great, especially with Trigeminal Neuralgia and my Gamma-Knife surgery not working as well as I hoped. And I haven’t driven or walked in this decade.”

With all the good stuff, this decade also kind of sucked.

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And maybe that’s what Dan was getting at: in life you always have to take the good with the bad.

Perhaps it was just his sage wisdom that comes with age. After all, he just turned 42!

This conversation got me thinking about the promise of the new decade and the opportunities it has in store for me. But these opportunities won’t happen on their own. I need to take control of what I can. (link to http://www.healthline.com/video/managing-multiple-sclerosis).

I’m realizing I’m finishing my 30s to position myself for greatness in these once-feared 40s. I have started aggressive physical therapy that is focused on building my core strength and increasing my range of motion. I also took the necessary steps to begin Rituxin, a more-advanced treatment to control my MS.

All of this is very empowering and fills me with hope.

Maybe turning 40 will be better than I thought.

 Happy pre-Birthday Jennifer!!!

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

Another multiple sclerosis dilemma

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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.)

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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.)

wedding couple

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.

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“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?

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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?

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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.

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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.

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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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An MS Doodle Dandy

Multiple Sclerosis patriotism

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With the exception of my late teen/early 20’s years, I have never been much of a rebel.  I grew up with this intense need to please and so when someone tells me to do something, I do it.

I floss daily.

I get my car’s oil changed every 3500 miles.

I pay my taxes BEFORE April 15th.

I wait ten hours after eating before swimming.

About the only rebellious thing I do these days is consume raw cookie dough against the advice of both the raw dough packages and that of my older sister.   But I try to do that in the privacy of my own home so as not to offend anyone and I do feel bad about it, kind of.

This sense of doing the right thing carries over into being a good citizen, even when MS makes me feel wiped out and yucky.

I suppose if I was really a great citizen I would have skipped my brief rebel years and joined the military.  The only problem with that was the fact that I am total wimp and wouldn’t have lasted one day in boot camp.  So hats off and deep, deep gratitude to those brave folks who defend our country!

The least I can do to be a good citizen is to vote.  I understand how government works; I watched Schoolhouse Rock when I was kid.

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(I’m still totally furious that Conjunction Junction beat out I’m Just a Bill for the number 1 spot in a recent special featuring all the episodes.  I demand to know who voted for that!)

So on primary day I put on my goody two shoes and headed off to the polls.  It didn’t matter that not many people bother to vote in the primaries.  I was going to because it’s a privilege and it’s my patriotic responsibility to honor that privilege.

I even did research on who to vote for.  And by research I mean I asked my very smart friends who have ideals similar to mine who they were voting for and then I voted for that person too.

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(And I did watch a commercial or two- I try to take this voting thing seriously.)

Luckily, my town is small and since it was only a primary the polls weren’t too packed and I didn’t have to stand too long to cast my ballot. But my civic duty was not done for the week.  The next day I had jury duty.

Honestly, I wouldn’t mind serving on a jury. I actually think it would be interesting.  I just can’t imagine any lawyer would trust me on a jury with all of my cognitive issues and my extreme fatigue.   But being the good citizen that I am, I would let the court make that decision.  I was happy and honored to do what my government asked of me.

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The problem was, this was a lousy week to have to serve.  I had a lot going on and precious few non exhausted hours to do them in.  Of course, I didn’t know this would be the case when I got my notice, the notice that gives you the option of postponing jury duty.  Being on the road by 7:15 the morning of, standing in long lines to be processed, and waiting long hours in a hot stuffy courthouse was just not conducive to my life and my MS that week.

But it was what it was and I would just have to do my best.  I took comfort in the fact that I had one of those ‘call the day before’ notices.  Every time in the past when I received one of those, I never had to actually go in.  I would call the automated line the day before and an automated voice would tell me I was excused.  That’s what would happen with this jury service, it just had to.

When people who don’t have MS say they don’t understand ‘brain fog’ or ‘cognitive difficulties’ you are usually too fogged to explain it to them.  So allow me to do it for you.  The following is what brain fog looks like:

At 4PM on the day before my service I called the courthouse.  The instructions were clear- do not call even one minute before 4.  To be on the safe side, I waited until 4:02.

The automated voice thanked me for being a good citizen and calling.  Then it informed me that all jurors with groups numbered 0- 58 had to report.  I had been assigned group number 0060.  I had to go.

I was distressed.  I absolutely could not believe it.  How on Earth would I get through this crazy week with jury duty smack dab in the middle of it?

jurors-lounge

I thought perhaps I made a mistake.  I called again.  And again, was thanked for my service and told that all jurors in group numbers 0-58 had to report.  I was resigned to my patriotic fate.  I would just have to suck it up.

I postponed that evening’s shot so I wouldn’t face the horribly achy side effects during jury duty.

I went to bed super early.

I set two alarms to get up on time.

I stopped on the way to get some much needed caffeine.

And I stood with my burning legs in the long check in line, chatting with other potential jurors.

When it was my turn to hand in my summons, the court officer pointed out that I hadn’t needed to report at all.   WHAT??

Didn’t I call the automated number, he asked?

“I did.  It said all jurors with group numbers 0-58 had to report.  So at number 60 that means me, right?”

The frustrating thing about ‘cog fog’ is that once your brain makes a mistake, even a simple counting mistake, your brain then accepts that mistake as correct.  So even though I have known how to count since first grade and I called TWICE, I still screwed up.

I’m such a dedicated citizen that I showed up for jury duty when I didn’t even need to.

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The court officer told me that my service was completed and kindly sent me on my way, probably noting my name and number for next time to tell the judge “this chick is way too dumb to serve, she can’t even count to 60.”

The good news was that I got back the badly needed day in the middle of the week.

The bad news was that I was so frustrated by my mistake that I wasted a lot of that day stressing over it.

Before I knew it the night passed, and when I turned on Facebook the next morning I was reminded of the date.

It was 9/11, a date no American will ever forget.

The date got me emotional.

It got me sad.

And then, it got me proud.  I started thinking about the amazing country I am lucky to live in.

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I started humming Yankee Doodle Dandy.

Here’s another way brain fog works, your mind starts wandering down seemingly insignificant paths for seemingly no apparent reason.

I looked up Yankee Doodle Dandy.

Did you know that doodle was actually an insult?  The phrase Doodle Dandy was meant to insult the earliest American patriots, doodle meaning dumb.  But they chose to adopt the phrase instead.

And so it was with me-MS dumb or not, I’m happy to be an MS Doodle Dandy; an MS Doodle Dandy who’s ready for jury duty whether she’s wanted or not.

PS  If you are humming Yankee Doodle right now than you are a true patriot for sure!

yankee doodle dandy

 

Seal of Approval

Multiple Sclerosis inspiration of the aquatic kind

approval seal

In last week’s blog, I talked about whales.  Today’s blog is about seals.  Well, a seal, one seal in particular.  Who knows, maybe next week I will blog about sharks.

Or dolphins.

Or maybe crabs.

Let’s hope that if I ever feel the need to blog about crabs is will be of the marine kind, not the cooties kind.

gray seal

But before I blog about a seal, (a gray harbor seal to be exact like the guy above and not a singer like the guy below,) I must first digress just a bit.

singer seal

I wouldn’t be much of an MS blogger if I didn’t enjoy MS blogs.  In the links section of my website I list some of the ones I regularly follow.  I highly recommend you check them out as long as you promise not to like any of them more than you like mine!

LOL!

(Not really LOL but I didn’t want to come off as too possessive so I hope the LOL tames that envious side.)

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On a couple of occasions I have had the chance to meet Rick Conti, a fellow blogger who blogs about MS, his faith and Haiti.  Rick really loves to write about Haiti.

His blog is called Limping into the Light.

It was his blog of last week however, that lead me to flop on my bed and hide my head under the pillows in deep shame.  His blog and the fact that I was really, really tired.

He blogged about the importance of exercise.  Read his post here-Step across the Line.

While I rested his blog stayed in my head, maybe because he was right.

Technically, I know about the importance of exercise.

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I know that supposedly it will help me have more energy, (maybe if I exercised more often I could confirm that.)  When I started my own blog I talked a lot about my own ‘get fit’ plan that involved veggies, more water and exercise.

I have made more progress on the first two tasks than the last.

The thing is, there are exercises I enjoy, specifically beach walks and using my Wii Fit.

But in addition to the ‘being tired’ excuse there is the old and tired excuse of no time.

Which is exacerbated by MS robbing MS’er’s of precious time in the day.

See what I did there-using the word exacerbated?

Rick’s post continued to haunt me and began to destroy my excuses.

sealcartoon1

It was my favorite time of year.

It was a beautiful day.

I live only minutes away from one of the ten best beaches in the country.

(I’m not making that up- I’ve read it in travel magazines and on Dr. Beach’s website.)

It was time to get my butt and legs moving again and get back on the exercise bandwagon.

I headed to the beach, parked and used the stairway to walk down the sandy cliff.  That was a ton of exercise right there and I wasn’t even on the beach yet!

As I got down to the shore a seal popped up in front of me, very close-maybe only in water waist deep.

The surf was rocky and there are sharks in them waters so I wasn’t going in to splash around with the little guy. But I started walking to the left along the shore and the seal swam alongside me.

8-9-14_Harbor seal 2

He was doing most of his swimming beneath the surface but at least 5 different times he popped his head up, looked directly at me and then dived again.  Was it my imagination or was he following me?

It was definitely the same seal as he had distinct markings on his back. Maybe he was checking me out because he thought I was following him?  But since I’m drastically out of shape I was not keeping a steady pace and was stopping to rest a time or two (or three or four.)

Yet each time he popped up, he was right beside me.

Since I was enjoying this I walked pretty far.  (I always forget about the walk back.)   When I realized my seal friend wasn’t about to give me a ride to my car I knew I had to turn back.  But I didn’t want to lose him either.

As I was trying to decide what to do, my friend popped up again, looked right at me again and turned around himself. We started heading back together.

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After a couple of feet, he reversed direction and I didn’t follow.  I just figured our visit was over and kept on my way.

As I walked I realized we had gotten pretty far from any other beach goers.  It was then that I saw a guy heading in the opposite direction, walking towards the isolated part of the beach. Was my seal friend trying to warn me to not be alone in that area with this strange guy or have I just watched too many crime shows?

Luckily, I may never know.

I got to the end of my walk, the area where there were lots of people and the stairs back to the parking lot.  Right before I turned to walk off the beach. my seal popped up again!!!! He looked at me, seemed to nod his approval and then started swimming off into deeper water, as if saying he would be on his way now.

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It was an awesome experience.  So much so that I came home, sat my butt down and wrote about it on Facebook.  Many people commented, calling my friend things like a guardian seal, a gift from the universe, an angel, a muse, a visit from beyond and lots of other cool things.

Perhaps my seal was none of those things.  Perhaps he was all of them.  Perhaps he was just a cool fluke-not the flounder fluke, I think my seal friend would eat that fluke, but fluke as in a chance occurrence.

I guess I can’t really be sure what the seal’s true intent was in keeping me company in my attempt to exercise and ‘get fit.’

But I know I enjoyed him.

And, if I’m being honest, no matter what, I need to look at his visit as something even bigger than me.  Something, or someone, besides Rick, saying “Get some damn exercise girl!”

And, unfortunately for my tired, busy self, there probably aren’t many excuses to get around that…

You are not alone

 

Thar She Goes…..

Multiple Sclerosis goes whale watching

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Forgive me please if this blog post gets a little off the multiple sclerosis topic.  There will be a connection, I promise.

Aren’t we with MS always connected to MS in some way?  The harder we try to disconnect to it the more connected we seem to be.

The above is a picture of a whale. No matter how fogged your brain fog may be today you probably didn’t need me to tell you that.  You probably opened my blog and “said what does a badly drawn picture of a whale have to do with multiple sclerosis?”

This image is the only thing I have ever been able to draw my whole life and thus was the consistent subject of all of my art projects in school.  Make something out of clay? Here’s a whale.  Carve something out of a bar of soap?  Here’s a whale.  Paint a picture on a plate to give your mom for mother’s day? Here’s a whale.

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What is ironic is that I was blessed to grow up in a beautiful place right by the sea and have seen many a whale or two.  Sometimes we were able to see them right off the beach.

So you would think that I would know that the above picture looks nothing like a whale.  Not even a little bit.  Unless there’s a yet unidentified whale species, whales do not look like this.

Yet everyone recognizes my picture.

Just like MS, it makes no sense.

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Last week my mom, sis and I decided to go whale watching, an activity we try to do every few years.  I was excited to go but also very nervous.  I didn’t share my concern with them as it was too humiliating and horrible to speak out loud.

See, the last time I was on a boat, I got a tiny bit sea-sick and I’ve been traumatized ever since.

I know for most people that’s not a big deal, but for me it was disturbing.  I come from a long line of Portuguese fishermen.  My grandfathers, my great grandfathers, their grandfathers and great grandfathers before that even, were all fishermen.  My father and uncle greatly disrupted the family legacy when they decided to become police officers instead.

grampa

By the time I was old enough to pick a career the fishing industry had started to decline locally.  Plus, I wasn’t sure I wanted to be around smelly fish all day and so, I too, took a different path.

But sea water runs through my veins, mixed with Portuguese red wine to get the blood pumping.

Thus, there was absolutely no excuse for getting a little sea sick.  When it happened, I could see my ancestors looking down on me with shame and I couldn’t take it.  What if I got sea sick again?

beachedwhalescartoon

And to make matters worse, this stupid MS has caused me to start having bouts of vertigo.  Physically, I would survive if I got sick on this trip but emotionally, I just couldn’t imagine.  And to add to the stressful mix, it was a choppy day with one hurricane or another somewhere off in the Atlantic churning up some extreme wave action.

I couldn’t speak my concerns for if I did, they would be real.  Yes, I survive multiple sclerosis but to not survive the motion of choppy waves on a big boat, it was too horrible to think about.

On deck the crew was warning people about the severity of the waves and was offering motion sickness pills.

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I had a decision to make.  If I took a pill and was fine I wouldn’t know if it was the sea faring me who didn’t get sick or the result of the pill.  If I didn’t take one and got sick I would be forced to crawl under an embarrassing but steady rock.

I decided to take the freaking pill, mostly because I was impressed that the crew was offering them to people for free.  Nothing is ever free in the tourist industry but these little motion sickness pills were, probably because the crew didn’t want to have to clean up after the people who didn’t buy them.

After digesting the pill I sat on the bow- the front of the boat for you landlubbers and the place that takes the waves the hardest- and just enjoyed the sun.  And choppy was right.  The boat sped over the waves with a very rocky gait.

And I was fine!!!  I was so pleased by this that I decided to stand up.  The crew kept telling the passengers to hang on as the boat sped along and so I did.  Standing at the bow, with refreshing salty spray blasting at me-circa Leonardo and the ‘King of the World’ bit in Titanic, I hung on for dear life and enjoyed the ride.

titanic

Behind me, also clinging on for dear life was a little boy about five, who kept shouting “this is awesome!” with every crest we jumped.  And it was awesome.

Pill or no, there was something freeing about this wild ride.  I had to brace both of my legs and my arms held the rail in a death grip to keep from falling but it was fun.

I knew that MS would cause me to be in great pain the next day; that the nerves in my arms and legs would pay me back for this fun but those aches were tomorrow’s problem.

whalecalf

We did get in some great whale watching hanging out with a mom and her calf who, like a human child, was enjoying showing off and playing.  They even treated us to a double breach.

I only got to see the mom breach though. By the time I found out where I was supposed to look the calf’s breach was done but I did get to see momma humpback do her thing.

whale breach

That night, still on a high from my wild Atlantic ride, I took two Aleve before I went to bed, anticipating a very bad morning.

But when I woke up, I was fine again!!!

I think people who don’t have our chronic symptoms take feeling good for granted and I don’t blame them.  I used to do that too.

MS is constantly surprising me.  Just when I think there couldn’t possibly be any MS surprises left, it surprises me again.

In his own way, Todd does his part to save the whales.

But what an incredible experience to have MS surprise me in a good way with no pain where there should have been lots of pain.

I guess it just goes to show another reason why we can’t let MS hold us back.  With its unpredictable nature, we just might get some good surprises mixed in with the bad.

And did I avoid the seasickness because of the free motion sickness pill and avoid the pain because of two Aleve tablets?

Maybe, maybe not.

But I’m happily considering myself cured- at least of any possible traits that could disappoint my ancestors…

Maybe next week, I’ll go fishing…

ssyvonne

*******Fishing drawing by Nicole*******

********If you enjoyed today’s blog you may also enjoy my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.

Richard M. Cohen, NY Times bestselling author of Blindsided and Strong at the Broken Places, said that MS Madness! “combines defiance with humor, the secret weapon of the sick.”         Please check it out if you haven’t yet gotten the chance**********

cover-half

 

The Motley Two Go to Motley Crue

Multiple Sclerosis meets heavy metal

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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…

londonlips

(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.

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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!

guys on truck

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.

jugs

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.

motley2

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.

concert

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.

alice

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.

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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….

friendstalking

 

A Zombie Goes Down the MRI Tube

Are you an MS zombie too?

ms zombie

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.

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(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.

music

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!

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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.

zombie sign

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….

zombie girl

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.

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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….

zombie zoo