Tag Archives: rolling stones

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?

“I don’t know, what do you think we should do?”ID-100413542

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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Lazy Bones

An MS think tank

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My new favorite song is a perfect song by my favorite band recorded back in 1973.  Yet, I’d never paid much attention to it before.  How can that be?

The song is 100 Years Ago by, of course, the Rolling Stones.  It is basically a look at aging which is ironic because Mick and Keith were just babies when they wrote it.  But I can’t imagine it would be any better if they wrote it now.

It’s filled with perfect lyrics like “Don’t you think it’s wise sometimes not to grow up?”(Yes Mick, I do,) “Now if you see me drinking bad red wine,” (is that even possible?) and my favorite, “Call me lazy bones..”

It’s a fun song and even if you’re not a Stones fan, (is that also possible?) it’s worth a listen.  And since we all have to age, MS or no MS, it doesn’t have much to do with multiple sclerosis.

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But the lazy bones line has got me thinking.

For a long time I’ve pondered the difference between fatigue, (incredibly terribly miserable fatigue,) and laziness.

Now my MS friends are starting to freak out at the word laziness, and rightfully so.  When you live with an invisible illness you live with judgment.  People, and by people I mean colleagues, neighbors, acquaintances, family, friends, doctors, and strangers, tend to prefer to not believe what you say is going on with you.  It’s easier for them to dismiss your diagnosis and/or assume you’re just lazy.  And it sucks.

And have you ever noticed that even if you don’t talk about your symptoms, suddenly people like to tell you what’s going on with them health wise?  When did an MS diagnosis make me a toll free medical health line? These same people don’t want any input and certainly don’t want to hear what’s going on with me medically.  They just want to vent and write me and MS off even though I’m not the one venting!!!ID-100296977

So I’m not talking about those “people” who make the lazy assumption.  I’m talking about when I try to decide if I’m lazy.

This bothers me so much that I’ve started thinking about it.

Truly, I can spend hours lying on my sofa thinking about the difference between laziness and fatigue.  (Is that lazy?)

I used to be independent. I used to be able to go to my job, work ten plus hours, do errands afterwards, come home and eat a quick dinner and THEN maybe even do laundry or go to a meeting for a committee I was volunteering on.

I can’t even imagine that now.  Slowly all that energy disappeared and before I knew it some doctor I didn’t even know was telling me I had multiple sclerosis and I started injecting myself with crazy expensive drugs.

Who’d thunk it?

So those days of being active for over 16 hours a day are long gone. According to Mick and Keith, about 100 years ago gone.

But I don’t like being inactive and so I don’t like thinking I may be lazy.  But I often feel lazy and so I start thinking and then I get more confused and start thinking some more.

Here are some of my thoughts-

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If, when I wake in the morning my whole body aches and is screaming for rest and I don’t get up right away, or get up, pee and go right back to bed to rest a bit longer, is that lazy or is that MS fatigue?

If I’m moving so slowly that it takes me an hour to shower and get dressed when I used to HAVE to be able to do that in 20 minutes in the past, is that lazy or is that MS fatigue?

If even doing the simplest errand such as going to the pharmacy and picking up a prescription is so exhausting that it’s the biggest accomplishment of my day, is that lazy or is that MS fatigue?

If it’s easier for me to just grab a bowl of cereal for breakfast rather than taking the time to put together a healthy smoothie, is that lazy or is that MS fatigue?  (For the record, I have started drinking healthy smoothies and while I know they are good for me, they haven’t helped with energy.  Perhaps I need to drink more than just three in a month?)ID-100348548

If it’s a cold, rainy Sunday and all I want to do is curl up under a super soft blankie with a good movie, is that lazy or is that MS fatigue?

If I happen to go say a few days or a few weeks or a few months without exercising even though everyone says that exercise is good for me, is that lazy or is that MS fatigue?

If someone asks me what I want to do or what my preference is on something and my brain is just too tired to decide and so I leave it up to the other person to decide despite their frustration, is that lazy or is that MS fatigue?

If I suddenly have this intense desire to bebop around my apartment while listening to say, for example, a Rolling Stones song but have to sit before the first chorus, is that lazy or is that MS fatigue?  (Who am I kidding?  The Stones give me enough energy for a whole song.  How can it not when one thinks about the time Keith Richards passed out on stage but still finished his entire set from the floor?)

If I spend some quality time responding to important emails and then reward myself with 20 minutes of dog and baby videos on YouTube, is that lazy or is that MS fatigue?ID-100128348

Does any of this even matter?  It seems to me that is does.

Which is why I spend hours resting and employing my personal think tank on the matter.  Yet, I haven’t come up with an answer.

Shouldn’t the MS scientists and peeps be working on this?  Oh right, they’re actually busy trying to cure this beast.

And so it is up to us, the individual MS’er to try to figure it out for ourselves.  And to decide what we can live with and what we can’t in the realm between MS fatigue and being active.

It’s not that my MS fatigue or laziness hasn’t accomplished anything.  In the five plus years since my diagnosis I’ve moved, started this blog and published a book.  (Well, actually, my publisher published the book.  I just wrote the darn thing.)

I’ve probably done other things too; I’m just too tired to remember what they are.

I insist on not giving up and do my best to accomplish what I can, when I can. And I probably worry about this issue more than I should.

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But the fear of being lazy continues to haunt me as I struggle to figure all this out.

Thankfully, Mick and Keith say it’s ok for me to call myself lazy bones every now and then.

I like my lazy bones; my fatigued, doing the best they can, good old lazy bones…

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Talking Turkey on Turkey Day

A multiple sclerosis Thanksgiving post

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“Over the meadow and through the woods to grandmother’s house we go…”  Lydia Maria Child

In my world the song goes something like this-

“Over the bridge and around the city to my cousin’s house we go…”

And by “we,” I mean multiple sclerosis and I.

Yes, I am traveling this turkey day and am looking forward to it.  I’m going to my cousin’s house where he and his lovely girlfriend host a bunch of us crazy deSousa’s.ID-100187955

Unfortunately, as our family grows, not every member will be able to join us.  And this past year we had to say goodbye to our patriarch and so the holiday will include some sadness and memories.

But still, we are a loud, fun, wild lot.

And we span every age decade from only a few months old to somewhere in the eighties.  I’m relieved to report that I fall in the middle age wise which is a good place to be.  I’m young at heart but old enough to get away with being crotchety and persnickety.

Of course, multiple sclerosis is coming with me.  This damn beast is way too clingy- it insists on coming with me everywhere!

Since it will be a long day, my MS meds are coming with me as well.   There are the achy body meds, the moody mood swing meds, the obnoxious bladder meds, the “I really need an energy boost” meds- also known as legal speed and the “I’m so freaking tired but can’t fall asleep” meds.   They will all be in attendance.

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But MS or not, meds are not enough to bring to a holiday party; unless they are good meds of course.

What to bring to a family holiday dinner gets a little tricky for me due to an innocent little incident that happened several Thanksgivings ago.  Flash back over 15 years when I made a gorgeous apple pie for this same holiday.

I had made it before and it was delicious.  And I really made it too- no heating up a Mrs. Smith’s for me.  I peeled, cored and sliced apples and made a yummy crumb topping.  I might have cheated on the crust but still, this was a good pie, baked with love.

Problem was, on the two hour drive on that super cold day I put my pie in the trunk of my car which allowed the topping to freeze and then harden to rock hard proportions.  The topping was so hard that my cousin refused to serve it, afraid that one of his guests might sue him if they broke their teeth on it.

Dental bills are expensive.

I said he was overreacting and he pointed out that he couldn’t even cut into my pie to serve it.  To prove his point, he even tried cutting it with a chain saw, to no avail.eddiechainsaw0002

Since that day, he has refused to allow me to cook anything, even boxed macaroni and cheese which I have mastered.  Apparently, that is not an appropriate Thanksgiving side dish although I will be sitting with a six year old at this dinner who would disagree.

So what does one super exhausted relative bring to a holiday celebration where they are not allowed to cook?  I am bringing a box of chocolates and a bottle of Portuguese wine.  (Who am I kidding?  The wine is for me.  Come to think of it, the chocolate is too.)

What would you bring my friends?

Here’s what I decided.  I am also bringing a Star Wars floor puzzle and a holiday version of the Memory game- hopefully, if I remember to pack it.

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I know these are not the normal Thanksgiving accompaniments but I thought it over and decided perhaps the best gift I can give my hosts is to stay out of their way in the kitchen.  My MS, glass of wine and I can find a quiet corner where I can keep busy by visiting all the relatives, holding the new baby in the family and hanging out with the young ones by completing a puzzle and playing some friendly yet serious Memory competitions- holiday style.

Maybe these gifts will help keep the young ones out of the kitchen and hence, I think I am bringing the best gift of all.  Not just my charm and sweetness but my ability to sit and stay out of the way.  MS and I have gotten very good at that.

As long as I have my meds!ID-100260170

As you know my friends my blogs are tongue in cheek.  And while the pie story is true and my cousin is serious about my not cooking due to the pie story, I am really excited to see him, his lovely girlfriend who is an amazing cook, and the rest of my family.  And in this holiday of celebrating being grateful I am grateful for them and for lots of other things too; God, all my family, all my friends, living where I do, the Rolling Stones, classic rock in general, the Boston Bruins and many, many other things. 

I am also super, super grateful to you my readers and wanted to give you a gift of thanks as well this holiday.  Since I can’t even begin to think about bringing each of you pies that may or may not break your teeth, I thought I would close with some bad holiday jokes for you to share with your family. 

Advice-they may work better if you share them after your family has entered into a turkey/potato/dessert coma-like state and are only half paying attention anyway.ID-100253345

Why did they let the turkey join the band?  Because he had drumsticks

Why can’t you take a turkey to church?  Because they use FOWL language

If the pilgrims were alive today, what would they be famous for?  Their age

What kind of music did the pilgrims like?  Plymouth rock

What do you get if you cross a turkey with an evil spirit?  A poultrygeist

What is a pumpkins favorite sport?  Squash

What happened when the turkey got into a fight?  He got the stuffing knocked out of him

What smells best at Thanksgiving dinner?  Your nose

Which side of the turkey has the most feathers?  The outside

What did the turkey say before it was roasted? Wow, I’m stuffed

And if these stuffy (stuffy-get it?) jokes don’t help you through the holiday then you can amaze your family with this factual but little known Pilgrim trivia that everyone should know but doesn’t.  The Pilgrims did not land in Plymouth first.  They stopped in Provincetown, MA and hung out there for a bit before venturing on to Plymouth which they could see across the bay.

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Don’t believe me?  What do you think the Pilgrim Monument in Provincetown is for???  Like modern day settlers, everyone likes to visit Provincetown but only hearty souls grow up there!kp beach

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Happy Thanksgiving my friends!

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Jokes courtesy of jokes4us.com and ibtimes.com

Provincetown photos by Provincetown settler Kristin Perry

Picture of my cousin with the chainsaw courtesy of the train wreck that is my old photo album

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MS Hips DO Lie

New multiple sclerosis symptoms go musicalID-10019101

I was sitting in a meeting a couple of weeks ago when my left hip started to vibrate and shake.  It felt like how it felt in the old days when we had pagers or antiquated cell phones attached to our belts.

Immediately I went looking for my phone.  Did I forget to turn it off?  Was it on silent mode in my pocket?  This was very possible as I have said over and over, my cognitive abilities stink and so who knows where anything is on my person?

But no, my phone was completely shut down and resting lazily in my purse which was slung over the right side of my chair.  My hip continued to hum.  Was this a new MS thing?

Ironically, I was at an MS meeting and was surrounded by fellow MS’ers.  I wanted to ask them what they thought but what if this wasn’t MS related. How do I explain this bizarre vibrating going on?

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What if they thought I was crazy?

What if they thought I was a perv?

This vibrating, shaking hip thing continued throughout the afternoon and made me think of a Rolling Stones song, (of course it did,) called “Shake Your Hips”; specifically the line that says, “do the hip shake thing.  Do the hip shake thing babe.”

So now, while I was trying to concentrate on the meeting, I was also dealing with a hip dancing on its own and had an awesome Stones verse stuck in my head.

Since that meeting other body vibrations have started to occur; the right hip, one foot but I can’t remember which, (next time it happens I will clarify), a leg, (ditto on which) and back to the left hip again.

It would be nice if these limbs were dancing in a sequence but alas, since this is probably multiple sclerosis, of course they choose not to cooperate.

It might be for the best. Most dance places don’t get exciting until after 10 PM and I’m always in my pjs by then.ID-10042722

Then recently, I got mad at something.

Really mad.

Really, really mad.

So mad my body started to shake.

I had never had that happen before although I have heard people talk about it.  My body was doing its own thing once again, vibrating in parts and shaking all over.

When I get in a bad MS way I turn to my faith.

If I’m so bad off that I’m being way too stubborn to appreciate God’s help, then I turn to humor.

And when I am so grouchy that anyone who tries to make laugh might get their head bit off, it’s then I turn to music.ID-100146496

And so, I couldn’t help thinking of Shakira’s song, “Hips Don’t Lie.”  Except, as far as I was concerned, my hips were lying.  Since they couldn’t be bothered to tell me what they were doing, they were lying!

At least the line in her song fit, “ahh baby when you talk like that, you make a woman go mad…”

And mad I was.  I was mad at MS, I was mad at the world, I was mad at my weird body parts.

I was mad that when my hips were shaking they didn’t look anything like Shakira’s hips.

It’s a cruel world we live in folks.

One song sung by a woman too beautiful to be believed was not enough to get me out of my crabby place.   More shaky songs came to mind, like the Cars “Shake it Up.”

I laughed at the line that says “do the move with the quirky jerk.”  Oh yes, that’s one move my body does know.  I was quirky jerking all over the place…

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As I was letting my body do this weird multiple sclerosis dance across my living room, I grew tired, spent even.

I felt all shook out.

I felt all shook up.

And then, then I thought of the music of my Elvis childhood.  One more song might get my body to relax and get the anger out of my nerves.  I looked up “All Shook Up.”

Did you know it’s an MS song?

Seriously, check out the lyrics if you don’t believe me.  MS gems abound like, “Well, my hands are shaky and my knees are weak, I can’t seem to stand on my own two feet.”

And “My tongue gets tied when I try to speak, my insides shake like a leaf on a tree.”ID-100289380

Supposedly Elvis recorded this song about falling in love but I don’t believe it.  I have been in love, lots of times, and it never felt like this.

Then again, I am single so maybe I wasn’t doing it right?

The point is, before I knew it, I went from being mad at the world, to dancing my strange MS body around my apartment to watching old Elvis videos on YouTube.

And I felt better.

So, are vibrating body parts and shaking limbs more symptoms of multiple sclerosis?

If so, then I guess that’s just how it goes.

I try to stay positive and so I came up with this-

If my body is moving around on its own, well that’s a lot less exercise I have to do!

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The Not So Golden, Slightly Tarnished Girls

Multiple Sclerosis is no match for a birthdayID-100183604

The story starts like this.  Three besties gather at the home of a fourth to help her celebrate her birthday.  The friends are the serious Gidget, the shy Amber, and the wild child Traci.

******Note-names have been changed in this writing to protect the ages and the humiliation of the participants********

The birthday girl was thrilled because her little brother called to wish her a happy 26th birthday,

The girl thought she was actually much older but since her brother is smarter than her and doesn’t have her MS related cognitive difficulties, she decided he must be right.  So there she was with her friends, celebrating a birthday that happened to fall on a weekend.

Ok, this third person writing is confusing me and since it doesn’t take much to really confuse me, I will just tell you that I am the birthday girl I am talking about.  And yes, according to my brother, I turned 26.

I don’t usually make such a big deal out of my birthday but since it fell on a Saturday, I felt I needed to do something to celebrate.  Watching marathon reruns of the original Law and Order episodes didn’t seem to cut it.ID-100256550Luckily, some of my friends happened to be available.

If I’m only 26, how can it be that I got lightheaded after drinking one glass of wine? What’s wrong with me?  It took me an entire five minutes to sip that glass- I shouldn’t have been lightheaded that quickly!

Things went pleasantly downhill from there.

We spent the first part of the evening recalling the times when we were younger, cuter, smarter, dumber and way less tired.

Yes I do know that smarter and dumber mean opposite things and so putting them together in this previous sentence doesn’t make any sense.  Allow me to explain it this way-back in time my friends and I were smart enough to figure out how to do the dumb stuff we did and even smarter at knowing how to get away with it.ID-100315351

Sharing stories reminded me of Bruce Springsteen’s hit, Glory Days.  Especially the line that says, “I hope when I get older I don’t sit around thinking about them, but I probably will” and the other line that says, “she says when she feels like crying she starts laughing thinking about Glory Days.”

Personally, I think it is ok to reminisce in this way, especially for my friends and me.   With my multiple sclerosis brain, who knows how long I’m going to have these memories.  As for my friends, cognitively speaking they are fine.

BUT, they ARE old.  Who knows how much longer they will remember these stories themselves.  I could write them down but that just seems exhausting.

As we cherished how much we used to love to go out, we talked about how glad we were that we weren’t actually going out.  The crowds, the drunks, the foolishness, it was all just too much.  It was then that we decided to get drunk and foolish.

It started with the game Scattergories.ID-100143404

Problem 1 occurred when Traci and I couldn’t read the game sheets.  Amber and Gidget have always worn glasses and even though Gidget was fretting about her ophthalmologist’s suggestion that she get bifocals, she and Amber could see fine.

But I had to pull out my cheaters and I was not happy about it.  Since poor Traci had refused to progress to cheaters, she could not see a thing either.  I found the lighted magnifying glass that I insisted was all I needed to read before I broke down and bought the cheaters and gave it to Traci.

With all of us ready with our assisted vision devices, we then encountered problem 2.  We tried to set the game timer only to discover that it was broken.  This was unacceptable on my birthday and so I did the practical thing and banged it several times against my kitchen table.ID-100166384

When that didn’t work, Gidget downloaded a timer on her phone and we began to play.  Thing was, we couldn’t remember how long we were supposed to set the timer for and so with each round we played, we gave ourselves more time.  By the end of the game I think we were giving ourselves 20 minutes for each round; not that all that extra time helped us any.

We had some classic game moments when we had to find answers beginning with the letter G. Traci came up with Things You Replace-Guys.

Imagine my shock when the normally reserved Gidget answered the part of the body question with a female part that rhymes with C-dot (she had to be channeling Traci to come up with that one,) and my horror when Amber (as big a Rolling Stones fan as I am) couldn’t come up with Gimmie Shelter on song titles, even as I hummed it.

Plus, I think it was playing on the stereo at the time!

What’s happened to us??

Wine, giggles and munchies ensued and as we got even tipsier we moved onto Traci’s favorite game, the hilarious, R/Xrated, adults only, not for the faint of heart Cards Against Humanity.

And it was fun; silly, pointless, crazy fun.ID-10054121

So what if we weren’t out on the town dancing in our highest heels?

(I don’t think I managed heels even in my best “no balance worries” days.)

And so what if Traci and Amber had kids they had to get up and feed first thing the next morning?

And so what if Gidget had to get ready for a crazy work week and her hangover wasn’t going to help her any?

And so what if this birthday fun lead to me falling into a two day attack of the zombie/super blah mode of multiple sclerosis, starting the very next morning?

Fun is fun.  And you’ve got to try to find it whenever you can, even if you need a weekend birthday as an excuse.ID-100207768

This thought leads me to another lyric of another song that I chose to adapt for the situation-

It’s my party and I’ll laugh if I want to,

Laugh if I want to

You should laugh too when the tears won’t do

Do, do, do, do, do!

My friends wouldn’t dare take a picture of me feasting on my birthday sweets but if you need an actual image, it looked something like this-

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Poor Gidget got stuck taking the pictures but here is one of some of our birthday fun.  Guess which one is the friend known as Traci..

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Want a helpful tip combined with some shameless self-promotion?

Here it goes-

If you need a birthday present for someone then give them the gift of humor, shared as only I can do it!

MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis is guaranteed to make all readers giggle through whatever ails them!

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Don’t believe me?

Then please check out some of the awesome reviews on Amazon!!

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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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So Much for Life Lines

A multiple sclerosis epic fail

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That’s it MS– you’ve gone too far!!!  I know I’ve said this before but this time I mean it.  You have not only let me down but you have failed someone close to me who needed my help and I will never forgive you!

When you live with an invisible illness it is often hard to explain to people what is wrong with you, especially when you mention cognitive difficulties.  What is that?  How is that different from just being a space shot?  Isn’t it really all in your head?

Cognitive difficulties are hard to explain, especially since you are usually having cognitive difficulties right when you need to explain them.

Just this week I was asked to give a talk about my book, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis to a women’s professional organization.  The talk included a free dinner so of course I was excited.

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I had been given the date, time and location several months prior.  I put the info on my calendar. I put the info on my website. I confirmed the date, time and location several times with the member who invited me. The day of, I decided to confirm the time and location once again.  Cocktail hour was at 5:30; I definitely didn’t want to miss that.

So imagine my confusion when I pulled into the restaurant at 5:35 only to find one car in the parking lot and a big sign that said the restaurant was closed.

How could this be?  Where were the people who invited me?  I called a friend who quickly gave me the name of the place I was supposed to be at, the restaurant where the event had always been scheduled.  Yet each time I looked at the notice, I saw the name of a totally different restaurant.

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The bigger perplexity of all this is the actual restaurant was one I like better then where I thought the talk was going to be.  And the name of it?  The Bookstore restaurant!

You would think since I was talking about my book a restaurant named The Bookstore would have stood out.  Luckily it wasn’t too far away from where I thought I was supposed to be and so I arrived only a tad bit late.

It was a lot of fun.  And this MS cognitive mishap helped give me a humorous opener to my talk titled, Laughing through the Pain.  But the frustrating part was that I checked, rechecked, double checked, triple checked and checked again the location of the event.  Thank goodness my friend was home or I never would have made it.  Of course, I didn’t think to bring the contact info of the member who had asked me to speak. And in case you’re wondering, the dinner was yummy AND I ate the veggies that came with it.

The bottom line is that I’m used to my MS brain doing this kind of annoying thing and the only thing that surprises me is that it keeps surprising me.  But sometimes, this blackout of information is not funny at all.

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My mom needed my help and due to multiple sclerosis, I couldn’t provide it.  I like helping people and I believe it’s important to help others whenever you can.  I like to think of myself as responsible, the one you can turn to in your time of need, especially if your need happens to be in my particular area of expertise.

But my mom, who has been my rock on this journey, called out to me in a crucial time and I was beyond useless to her. My guilt, shame, heartbreak and fury remains.

What did she need that multiple sclerosis refused to provide?

A ride to an appointment I couldn’t give her due to fatigue?

No.

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Help hanging new curtains that my balance would not allow?

No.

Help running errands when I haven’t run in years- MS or no MS?

No.

What my mom needed when she called in desperation was the prize winning answer to a Rolling Stones trivia question just asked on the radio. AND I DIDN’T KNOW IT!

How could that be???  You’re probably thinking, “oh, that’s all.  That’s no big deal.  Yvonne is exaggerating again.  Unless the prize was a thousand dollars.”

But you are wrong!  This was huge!  I don’t even know what the prize was, likely a t-shirt or something.

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The problem is that my mom should have no question that I am her go to person when it comes to the Rolling Stones.

(Frankly, I was pleasantly surprised when she told me she was listening to a radio station that would ask a Stones trivia question until she told me that it was an oldies station!  When did the Stones become oldies?!!!)

I have always prided myself on my classic rock knowledge, especially when it comes to my favorite group.  Back when Who Wants to be a Millionaire had phone lifelines I made sure all my friends and family had memorized my number specifically so I could be their classic rock life line should they happen to find themselves on the show.

Just this week I was watching Millionaire and there was a Neil Young question that, of course, I got right.

What was even more upsetting was the fact that the question my mom asked was very similar to a question a radio station asked me at a concert this summer.  And the answer was the same!  Shouldn’t that have stayed in my memory bank?

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My mom’s trivia question was what was the Rolling Stones first hit?

I tried to cheer myself up with the knowledge that it was a vague question.  What constitutes a hit- top 20?  Top 10? #1?  And does the word “hit” mean in the UK or the US or both?

I could make all the excuses I wanted but the answer was It’s All Over Now and I should have known it.

The scary fact is that if I can’t be helpful to my family and friends when they need me, then what?

If I can’t remember crucial information like Rolling Stones trivia then what will I forget next?

Driving to the wrong restaurant is easy.

I can certainly deal with forgetting how to spell my own name- it’s kind of a tricky one.

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And I’ve long moved on from the time I forgot how to take a shower while I was taking a shower.  Cleanliness is overrated.

But forgetting Rolling Stones trivia? That’s just unforgiveable MS!

But what can I do?   I can only rest, take my meds, play brain games and spend hours with my Stones cds in an attempt to keep this trauma from occurring again.

And I guess I better go buy my mom a t-shirt…

Thank you to the Business and Professional Women’s Association of Lower Cape Cod.  I had a great time!

Once I found you….

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Two Years Later- Still December Dates

An MS’er looks at the calendar

 

While this blog was written two years ago, since I just returned from the same trip, and dates do not change, I thought I would offer it to you again.  Mostly because I am way too wiped out to come up with anything new this week….

It’s the Monday morning after a month long stay in another state, visiting relatives.   My family and I had returned late on the previous Thursday evening.   The next day it was all I could do through my fatigue to go to the post office and pick up the collected mail.

(I had written about after travel stress and mail previously- check out the blog post from last year’s trip, Its On My List.)

 

I spent the weekend alternating between resting and going through the mail, resting and sorting the mail, resting and paying late bills, and resting and responding to other mail.

Before I stepped into the shower this Monday morning I looked at my calendar and saw written for today, 12/17/12, “confirm insurance, get approval and schedule MRI.”

While I was gone, changes had been made to my insurance and I knew getting this straightened out was the day’s priority.  Yet in the shower, the date was bugging me.  There was something more to 12/17, but what?

It didn’t help that December dates are pretty busy for me and not just because of the huge holiday that everyone knows about and adjusts their month around.

(You know you do- even if you don’t celebrate Christmas you are making plans as all your favorite places are closed that day!)

It’s also a birthday galore month for me (besides the big guy’s of course.)

 

This particular December month is filled with the birthdays of one nephew, two cousins, an aunt, a niece-in-law who is also the mother of my two great nephews, a friend turning 40, another friend who turned 40 last year,  a third friend who I thought was turning 40 as my MS brain completely forgot we celebrated her 40th last year with the other friend who turned 40, and a fourth friend who is my same age but who I can never remember if she is younger than me thus hitting my age this month or is older and is hitting the next dreaded year first.

At one point I discovered that a cousin-in-law I have grown particularly close to this past year also had a birthday this month that I almost missed-thank goodness for social media birthday updates.

 

While watching the Rolling Stones 50th anniversary Pay per View concert at a friend’s house, I was reminded that Keith Richards birthday was coming up (12/18/43 for those who would like to note it on their own calendars.)

I have always been a Stones fan and think Keith is the coolest of the cool and one of the most talented undead humans on our planet.  But remembering his birthday is a bit extreme for my taxed brain.

Perhaps I remembered because I had listened to the audio CD of his autobiography Life this past summer. Still, retaining the actual date is random.

 

(Speaking of MS as this is an MS blog, did you know that Keith had a beloved aunt who suffered from MS?  He has a real understanding and sympathy for what living with MS is like.  How much closer to perfection can this rocker get?)

And I don’t care what all these folks say, they must have gotten ripped off from the birthday fairy or Santa Claus when they were kids.

Anyway, what is up with 12/17? There is that whole end of the word thing but that is scheduled for 12/21.

 

I finished the shower and made calls and miracle of all Christmas miracles, the calls went smoothly and I scheduled my next MRI.  It wasn’t until evening while I was writing on my calendar a reminder to stop taking Aleve 4 days before the MRI (and already bemoaning what an achy miserable blob I will be those days) that it FINALLY occurred to me what it was about 12/17 that was bugging me.  12/17/09 was the day I was diagnosed with multiple sclerosis.

Here is one of the many weird ways MS works. Every MS’er I know (me included) automatically remembers the day of their diagnosis. I can recall the date of diagnosis quicker than I can recall my social security number.

Yet, looking at the calendar on the exact day, and doing MS related errands involving this sucky anniversary, I couldn’t get my head around why this date was flashing like a black flag in my tired MS brain.

 

Oh, but the memory the understanding of the date brought.  Three years ago I was a hurting, exhausted, smoking, depressed, stressed mess working in a job I generally enjoyed but was the root of a lot of the stress.  And I was barely walking.  Yet I was trying to focus on the spirit of the Christmas holiday despite MRI’s and doctor appointments.

Today I am less hurting, not smoking, less stressed, not depressed, better walking, not at that job, less of a mess.

I’m still freaking exhausted ALL the time though and am about as sick of dealing with fatigue as folks are sick of hearing me whine about it!!!

I have discovered skills that I didn’t know about three years ago (writing and public speaking but I guess referring to them as skills is really up to readers and the few audience members I have encountered thus far.)

 

And clearly, I am still as spacey as I was back then as evidenced by my spending the day trying to figure out why this day was standing out even as I repeated the same day to MRI people scheduling my three year MRI!

Here is another thing that has not changed.   In 2009, the most important date was the one coming up the following week.   Even through the pain and the fear about what was wrong with me, 12/25 was the most important item on my calendar.

If it is all the same with you, I will continue to focus on the biggest date of the month.  So for the others (12/3, 12/3, 12/5, 12/15, 12/16, 12/17, 12/18. 12/19, 12/24, 12/27, 12/28, and 12/29,) your dates are ok on my calendar.

But the one that brings me the most joy is 12/25.

Merry Christmas Everyone and whether you celebrate Christmas itself or not, a healthy, blessed holiday season to all……

 

PS  Helpful holiday gift hint- MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis makes a fun gift for everyone!

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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….

 

 

Plumber Crack

From young to old, courtesy of multiple sclerosis

Last week I minimally and tentatively gave multiple sclerosis credit for something good-my being mistaken for someone not old enough to legally purchase alcohol.

Well I was wrong!   MS reared its ugly, aging head once more just so I didn’t go too crazy with sentimental gratitude.  For the record, I may never buy alcohol again for fear of breaking the being carded spell.

Allow me to set this latest scene for you.  This time last year I lived in a little house on the edge of the woods.  My then landlord lived in another town and if there was a problem, he would come fix it.  Simple as that.

Otherwise I never saw him.   Since he didn’t live near me, he didn’t care what the yard looked like and left the simple maintenance up to me.  Suffice to say after several years I was actually living in a jungle. Since I can barely keep up with basic maintenance on myself, let alone the inside of my living quarters, the outside was left to its own devices.

Now I live in a bigger, shared building with very kind, very dedicated landlords who also live on the property.  They are so dedicated that they are on top of everything!

 

Driving by my rental you will likely notice how pristine everything is and should you choose to walk across the lawn, you might actually emerge from your walk not covered in blood sucking ticks hiding in the overgrown foliage.

One would think this set up would be a good thing, that having landlords who address issues before they arise and take care of their property at no extra expense to the tenants would make said tenants happy.  One would be wrong, at least if one of those tenants happens to have multiple sclerosis.

To quote my friend the Grinch, “oh the noise, the noise noise noise! The one thing I HATE, all the noise, noise, noise, noise!”

 

Strange how I did great at the Rolling Stones concert but show me a hammer or a skill saw and I panic.  It must be something to do with classic, beautiful, somewhat organized sounds verses crap.

First, the carpet upstairs needed to be replaced.

Then the roof needed to be re-shingled.

I left my house during the first re-shingling day but even that was tricky due to MS.  The contractors had placed a huge blue tarp over the front door and I could see ladders on the other side of the tarp but no opening.  What if in searching for an opening I knocked one of the cute contractors off his ladder?

I had a back entrance but was afraid to use it as since I never did, I could not remember which key I needed to lock and unlock that door.   I was stuck for a bit until I saw the very edge of the tarp to my far right.

This is how I handled my dilemma.  I leapt off the front steps towards the direction of the tarp opening and into the bushes.   Then I got up, dusted myself off and ran away.

After the roof was fixed, several windows needed to be replaced.  Then said windows needed to be painted.  Nobody told me about the painting and so it was that I woke up one morning with the sound of someone singing while they tried to come through my bedroom window.  And that was just the painting on the outside.

 

The worst of the property upkeep is that of the landscapers.   My landlords are so nice that they tell the landscapers they can come whenever they want.   Which is why it is not unheard of for the landscapers to show up after midnight with their weed wackers, lawn mowers and leaf blowers.

Ok, my particular version of midnight due to my MS sleep issues, which probably translates to 10AM for the rest of the world.

I swear I am grateful for the care my landlords show the rental, I really am.

But I would be even more grateful if MS didn’t make enduring all that care so downright painful.  Once a hideous obnoxious noise (hammering, motoring, bad singing) gets into my MS head, I am down for days with the most killer headache one can imagine.

So the above was what was going on in my apartment for the last several weeks.  But that was not all.  I was also having plumbing issues. On any random, given day it was 50/50 whether my toilet would flush properly or not.

Plunging would not fix the problem.  I went online to research how to be my own plumber.  All the tricks I read about did not work.

On three different occasions I had to knock on my landlord’s door to report the plumbing issue. And on three different occasions he couldn’t fix it either.  And so, on three different occasions a plumber was called.   The plumber reported he had no idea why I was having such trouble.

 

I broke down.  I told my landlord that I couldn’t take it anymore and was leaving for the day to escape all this property trouble. I thanked him and his wife for their offer to use their bathroom whenever I needed it but said all I really wanted was my own toilet that worked.  I could take everything else, just please, please resolve this one issue before I went crazy.

A new plumber was called.  And it turned out, that I did, indeed, have a faulty toilet.  There had been lots of reports with the particular model as pipes in them crack easily and cause all kinds of problems.   I needed a new one.

My landlord called to tell me the problem and told me that he felt bad about all that had been going on and that he wanted to make it up to me.  Thus, he had ordered me a special ADA compliant toilet.

 

I told him I didn’t need an ADA compliant toilet.  I just needed a toilet that worked and he shouldn’t spend the extra money on something I didn’t need.  He said not to worry about the money.  He wanted to do this for me and “who knows what the future might bring with that disease of yours.”

My new toilet doesn’t have support bars around it but will easily accommodate them should I need to add them.  Just like my grandmother did with her ADA compliant toilet that she bought in her eighties.

Thus it was that exactly one week after I was mistaken for being 20 years younger than I am, I was using my new toilet for the first time, a toilet specifically designed for the disabled and the elderly.   And exactly one week after that, I had an actual birthday.  I swear you can’t make this stuff up!

 

Things have quieted down at my rental now.  And I am used to my new bathroom fixture and so far, it seems to work.  I’m only used to it at home however.  Since it is higher than others, I have to try to remember this when using a public facility.

Twice I have almost fallen on a filthy floor because I wasn’t expecting the seat to be where it was.  So I guess the new toilet is also helping me practice my balance issues?

It is certainly not helping with my exercise routine.  With my horrible bladder most of the exercise I got was from continually lowering myself onto my old normal potty.   Ah well, like we all need to do when we have MS, I will re-calculate and re-balance and be grateful to have a landlord worried enough about my future to make sure the most basic of human functions will be manageable no matter what MS decides to bring next.

In the meantime, I will just try to celebrate another birthday by not thinking about old age, young age, or MS.

But you can make sure that I am getting one of my older looking friends to buy the wine!

 

Even though it is my birthday, I want to give you a gift!   Five of you anyway.   Five readers who have signed up on Goodreads will receive a free autographed copy of MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.   Check out the link below to sign up before it’s too late!

Goodreads MS Madness Giveaway

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