Category Archives: MS Attitudes

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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No Summer Lovin

An MS dirge

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                                                  Summer lovin, had me a blast

(NOT!  Unless it was a nice big blast of cool air from my A/C)

Summer lovin, happened so fast

(Don’t I wish!   These days are dragging already and July’s not even here yet)

….Tell me more, tell me more

Well, since you asked….

(Italicized words are lyrics from “Summer Nights” from the musical Grease.)

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Vitamin D sparkling directly from the sun is supposed to do wonders for people living with MS.

(There’s a reason orange is the official MS color.  Well, that reason and the fact that all the other cool colors were taken by other important causes.)

Despite this, summer and I are not friends.

The fact that I don’t like summer (and really, really don’t like spring because it’s a long drawn out time where the rest of the world is getting ready for summer,) is unpopular.  For most people, July and August are their favorite months of the year.

Please allow me to state my case on why I disagree.

First of all, summer is hot. Only in the insanity that is life with a chronic illness would something that is ultimately good for you, (ie natural vitamin D,) also make you feel miserable.  And heat does make me miserable my friends, trust me.

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If you don’t believe me, ask the cute UPS driver who remarked what a nice afternoon it was when he dropped off my monthly meds.  My vicious reply so frightened him he hasn’t been back in days!

Of course, he’s not due back until next week but still, I was pretty scary that 78 degree day when he stopped by.

Then there are the bugs.  I try to stay out of their way, “you stay out of my house and I’ll stay inside and let you wreak havoc on my yard.”

But they refuse to cooperate and it’s hideous.

Earlier this month I went to a graduation party where everything was covered by these furry, disgusting caterpillars. I guess this is a prevalent year for them and we only have to wait for a bit and then these horrifically gross creatures will turn into gypsy moths- oh the joy.

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Not long after that I went to remove the change in my pocket and I felt something squishy.  I pulled my hand out and saw that the fingernail of my middle finger had impaled a small green bug that had managed to squeeze his way into my pocket.  The head part of it’s body was on one side of my fingernail and the rest of him on the other.  I’m still cringing about that little foray into the blissful days of summer.

And then there are the mornings where we should delight in waking up to cool breezes from windows left open all night.  That MIGHT be lovely except that this is also the time of year that people get yard work done. But, they also want to enjoy the beach and so the yard work must be done super early.

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Hence it was that the lovely sunny morning turned into a headache and then a body ache of ultimate proportions.  It was 6:45AM when my neighbor’s landscaping crew arrived.  Right outside my window one guy started the mower and the other guy started the weed wacker.

(Weed wacker would be a funny name if it’s screeching noise wasn’t so dreadfully painful to my super sensitive ears.)

Both guys had headphones.  I did not and the motor sounds pierced directly to my brain.

When the landscapers woke me up it was the middle of the night still. Due to my bladder issues I had only gotten five of my needed 10-12 hours of sleep and the day was expected to be a busy one.   I closed the window and covered my head with a pillow.  Right away it got hot and added additional misery. ID-100224548

I thought of calling the police as there must be an ordinance against that type of work so early but I worried about being THAT neighbor.  You know the one-Mrs. Kravitz from Bewitched or Mr. Roper from Three’s Company.  Or even Millie from my own childhood neighborhood; the cranky lady who kept all of our balls and Frisbees if they landed in her yard.

Of course I keep ear plugs for times of travel as airplane noise is also painful.  And of course I was out of them.  I tried cotton balls but they didn’t work.

The best solution was a brilliant one.  Turn on my A/C and that steady sound will help drown out the horrific racket outside as well as cool me off.  But since my head had already been affected so badly, I didn’t think up that idea until twenty minutes after the landscapers had finally stopped, over an hour later.

And just like that, my summer day sucked and was complete with pain in the brain, no thinking skills to speak of and just over all extreme fatigue-riddled, summer induced grouchiness.ID-100174457

All of the above just reinforces my dislike of the season. And it bothers me as I remember how much I enjoyed summers past.  It used to be that I could function on only a few hours of sleep, hit the beach, work at night, go out drinking with my friends and repeat it all the next day.

I miss that.

I miss the days when I wouldn’t dream of missing fireworks- bright colors in the sky with explosive sounds, cool!  Now I could care less.   And that just doesn’t feel so good.

Yes my friends, only a condition like multiple sclerosis can turn a fun song from a popular, campy musical into a ditty of misery.

Sure I could lament how the bad things of summer have started to beat me up in recent years and that is true.   But what I’m really struggling with is the mourning of fabulous summers past.

Even while I want to skip the fun invites I don’t want to skip them.  I feel guilty for skipping them, and get mad at myself over and over again.

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It’s a vicious cycle.

And so, with all things multiple sclerosis, I try to balance.

Maybe I’ll skip some invites but take part in others.

Maybe I’ll get extra strength bug spray and venture out once in a while.

I do live near lots of beaches- maybe I’ll go to one and cool off by jumping into the ocean, even if it means that is all I do that day.

I’ll weather (get it, weather,) these months as best as I can even if I do enjoy changing the lyrics to songs about summer and get irritable every once in a while.

Seems like that’s what MS is for….

But I’m definitely getting noise reduction ear muffs!

Happy Independence Day my friends! 

May you have a bug free, fun filled holiday!

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You Can STILL Call Me Oscar!

A multiple sclerosis transformation

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I originally posted this blog on 9/6/13 but ironically, with the heat and humidity and all, it still applies today.  Except for the “it’s autumn” part.  I have to wait a couple of more weeks for that.

But trust me, I’m counting the days!

I slept really well last night, despite the two nights of lousy sleep before last night’s night of good sleep.

I blame the two previous lousy nights of sleep on the incredibly obnoxious bladder issue that the meds don’t always help.

That pisses me off.

(Get it- pisses me off??  I have used that one before and it’s not my own but it IS a classic.)

Anyway, last night was a good night’s sleep so why did I wake up so crabby?

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Well, first off, after my morning bathroom run I turned on my computer to discover that an email I expected and eagerly anticipated was not in my inbox.  On top of that, for some reason, I couldn’t open my other emails, even after logging on and off a few times.

Things went downhill from there…

I turned into the biggest crabapple ever!

AKA, a sourpuss.

AKA, Oscar the Grouch.

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Email is a completely silly thing to get that upset over, especially since overall, things are well.

I had a doctor’s appointment yesterday that ran on time, went smoothly, and all my results were good- miraculous.

After a miserable summer, autumn is here and the weather is fine.  (Don’t you dare nitpick- I am in no mood.  For Cape Cod folks like me, autumn begins the day after Labor Day!)

I was settled in my new place

I was making decent progress on a project I was enjoying.

So what was with the lousy mood???

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When I don’t know the answer to something, I blame MS.  And in this case, there is some merit to that blame as it was the morning after my MS shot.

In addition to my email annoyance, other things that could be MS related went wrong.

My lack of concentration caused me to have trouble saying my morning prayers.

I spilled tea all over myself.

My clumsy fingers had trouble opening my cereal box.

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My lack of coordination dropped some of my breakfast on the floor.

My MS meds hangover was starting to cause my head to ache.

So what was I to do?

It occurred to me that I wouldn’t be very productive until I cleared my head some and I needed to be productive today.  Since the weather was gorgeous, perhaps a walk on the beach would help.

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It was at that minute that the sky darkened and scary looking storm clouds passed over my new home.

Then it started to rain.  Not a light, pleasant, stomp in puddles rain.  But a heavy, raging, life sucks with a vengeance downpour.

Oscar the Grouch was alive and well and had moved into my body and I was helpless to stop him.

I figured since I was now officially Oscar the Grouch I should do some research on him.

What I found was terrifying!

Oscar is not actually a monster, but a Grouch.

He was born in 1969- just like me.

He is rarely seen outside of his can.  (Hmmm, when was the last time I left my can, I mean, my house?)ID-100154859

He complains, A LOT.

He likes to say things like “Scram” “Get Lost” “Go Away” and “Ding Dong- you’re wrong.”

And scariest of all, he used to be orange.  And as most of you know, orange is the color of MS!

Oscar is actually MS and MS has actually taken over my body and turned me into Oscar.

Need more proof?

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It has long been known that multiple sclerosis is associated with depression (what is more depressing than being told you have MS?) and also with major mood swings.

I looked into this further and learned that MS is also known to cause “frequent bouts of anger and irritability,” and “are likely to affect everyone in the family.”  (Unless they run and hide.)

So what to do about it?  My doctor already has me on mood drugs as I snap at her as soon as I get to her office.

Like Oscar, I was tempted to hunker down in my can and pull pillows over my head.  But that seemed too unproductive even for the grouchy and unproductive me.

Plus, the remote control for my bedroom TV died.

So I wrote this blog instead.

Now, I will hide.

But not before first sticking my tongue out at the world and saying “Na, na, na na na!”

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Do to legal issues that I may or may not describe in a future blog I was not able to include an image of Oscar the Grouch in this blog.  Your imagination and emoticons will have to do!

Quotes on emotional changes with multiple sclerosis are from the National Multiple Sclerosis Society’s website.

Quotes from Oscar the Grouch are from Sesame Street and me.

Quote about being pissed off about bladder issues are from my sister Laurie.

“Na, na, na na na” quote is all mine.

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

Chicago MS Summit Part II

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

Meet Me in the Windy City

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What could I do?

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

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

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

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

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

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

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

Or a cane.

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

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

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

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

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The Not So Golden, Slightly Tarnished Girls

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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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Gag Me with an MS Spoon

Another very scary multiple sclerosis moment mixed with some 80’s fun

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You’ve probably heard of the Spoon Theory.  It’s an essay/story/explanation of how one woman uses spoons to describe chronic illness fatigue to her friend. It’s downright brilliant.

I did some research and I think and hope the author of the Spoon Theory is Christine Miserandino.  For fear of Google thinking I’m stealing her work, I hesitate to go into too much detail about it here.  But I encourage you to check it out on the Butyoudontlooksick website.

Actually though, the Spoon Theory has little to do with what today’s blog is about.

Unless you look at it in a random sort of way, which, of course, I always do.

My day began with a new MS scare.

But first, some background.

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When I was diagnosed with multiple sclerosis I was addicted to diet soda.   I soon learned that my second favorite drink in the whole wide world (wine holds the top spot,) was poison and I broke myself of the cola habit.  I’m proud to say that I don’t even like the taste anymore and now drink a lot of water.

At an MS talk I went to once a neurologist recommended that for those with bladder issues it’s better to drink the water rapidly, not by taking small sips like you’re supposed to do with wine.  She wasn’t suggesting gulping the water, but she felt lingering too long while you drank it increased your bladder problems.

As I took a regular sip this morning I began to gag.  Really gag.

Yes, we all have had times where something goes down our wind pipe the wrong way and we start to choke but then quickly recover.  This wasn’t like that.  It was way worse.

I couldn’t breathe and I began making these horrific sounds, maybe called wheezing but since I don’t think I’ve wheezed before, I can’t say exactly.

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It seemed like it went on for several minutes although it probably wasn’t quite that long.

I would have been frustrated if I wasn’t so frightened; I hadn’t chugged the water and it was water!  What did it get stuck on??

For the record, I have never gagged on diet soda or wine, not even when I was chugging them.

(Yes I have chugged wine but don’t panic; it was in my twenties and it was only the cheap stuff.)

Since I live alone and couldn’t breathe my panic during this choking fit increased.  It occurred to me that I may have to dial 911.  How to explain then, how I started frantically walking around my apartment, away from my cell phone, and waving my arms wildly as if that would help?

It was while I was moving around that something caught my eye.  It was my Footprints in the Sand throw.

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(For definition purposes a throw is a very small blanket that is sort of useless unless you throw it on something to cover up something else that doesn’t look very nice.  In this case, my throw was covering an ugly storage bin filled with sappy junk I don’t think I should throw away but don’t know what else to do with.  I use the box as an extra chair.  I like to make objects in my home do double duty.)

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Anyway, back to the near death experience. As I was panicking and not breathing, I happened to look down at the throw and caught the words “was only one set of footprints” and no lie, the wheezing began to let up.  Little by little I could feel my breath coming back and I began to panic less.

If you are not aware, Footprints in the Sand is a lovely story written by Mary Stevenson about how God is always with us.  I am convinced it was that line that helped me through my scare.

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Many of you may not believe this, but that’s ok.  I do.

And more importantly, this story illustrates what has become my MS coping method.  Multiple sclerosis does something terrifying and I look to my faith to help me through.  And then, to cheer me up I make fun of the scare.

In this case, the 80’s phrase “gag me with a spoon” popped into my mind which made me think of MS as a big old nasty spoon gagging me.  Then my mind begins to wander with random thoughts which lead me back to using spoons in a better way than gagging and made me think of the Spoon Theory.

As my brain easily went from faith to humor to mindless wanderings I slowly started to recover.ID-100248318

By this point, my mind was full of so many thoughts that the choking terror had diminished a bit.

Do I know for sure that the choking was due to MS?  I guess I don’t but I am blaming MS anyway since it was trying to get healthier due to MS that lead me from soda to water.

And, in the past, MS cognition issues have caused me to gag slightly as I have trouble swallowing.  It’s not that I can’t swallow.  My brain just forgets how to do it from time to time and a mild panic ensues.ID-10045271

I’ve also noticed that I sometimes start to gag when I brush my teeth, something that never happened until years after my diagnosis.

It would be one thing if I was gagging on chocolate, ice cream or bad carbs but water and toothpaste are pretty innocent.

Do I know for sure that it was God who physically saved me or if it was the story about God that brought me comfort?

Does it matter?

It does not.  Either way, this particular terror has passed for now and I won this round.

Take that MS!

Just as long as this win counts even if my cognitively limited brain is now swirling between the Spoon Theory, the Footprints in the Sand story and random 80’s quotes…ID-10016881

Since I hate to suffer alone, let me share some of these quotes with you.  If you remember where they came from, then you are having a good MS day!

“Gag me with a spoon!”

“I feel the need, the need for speed!’

“I’m not going to be ignored Dan.”

“I’ll be back.”

“They’re here….”

“All I need are some tasty waves, a cool buzz and I’m fine.”

“Can I borrow your underpants for ten minutes?”

“What’s happening hot stuff?”

“Bueller?  Bueller?”

“Hey, how come Andrew gets to get up?  If he gets up we’ll all get up.  It will be anarchy!”

“I’ll have what she’s having..”

And my personal favorite,

“Nobody puts Baby in a corner.”

 

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Not Just About the Cupcakes

A multiple sclerosis statement

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There’s a new hero in my MS world.

He gets me.

And he gets away with saying things I want to say.

I learned a long time ago that heroes don’t always come with a cape. And sometimes they may even be con artists.

Life is too short and so if you find a hero, treasure him.

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Or her.

Speaking of short, my new hero is very short.  His name is Mateo and he is three years old.  He’s the “‘Linda listen’ cupcake kid.”

If you don’t know what I’m talking about and have access to YouTube do yourself a favor and do a YouTube search with the words “Linda, listen.”   You will find an awesome video of Mateo pleading his innocence to a judge, his mom.

The Crime- Mateo is accused of conning his grandmother into letting him have cupcakes specifically after his mother told him he was not allowed to have cupcakes.

The Defense-Mateo is pleading not guilty as since the alleged crime took place in his grandmother’s house, his mother’s law does not have jurisdiction.

The Sentence- If convicted, Mateo will face a pow pow on his butt.

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Some of you are probably parents who will insist that children should not argue with their parents or that a pow pow on the butt is not a proper punishment.   I’m not a parent so I’m not going to weigh in on those issues.  I will point out however, that when one of my nephews misbehaves a “simple time” out usually works pretty well.

Oh who am I kidding? My nephews are perfect.  They never misbehave.

These issues aside, Mateo is probably one of the best lawyers I have ever met and I used to work with a ton of them.  Really, Harvard should give him a teaching job.

And while I have on several occasions been guilty of eating cupcakes I knew I wasn’t supposed to, that is not why Mateo is my hero. He is my hero because he says outright, loud and clear, over and over, “LISTEN TO ME!”

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Haven’t you ever wanted to say that to those around you?  For me, it’s happening more and more, the longer I live with MS in my life.  And I’m not talking about the naysayers in the world, those that judge you and it doesn’t really matter if they listen to you or not: their ears will never hear you no matter what you say.

No, I’m talking about the people closest to us, those who really want to help.

And I love them- I truly and deeply do.  Mateo clearly loves his mother.  You can tell as even though he is calling her ‘Linda,” he also calls her “honey.”  I believe he does this so she knows his frustration has no bearing on how much he loves her.

But despite that love, he wants, no he needs, to be heard!

Likely you know what I am talking about.

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From an MS standpoint, one example may look something like this; someone asks you how you are feeling and you tell them.   And then they ask why you feel that way.  When you can’t tell them why they come up with non-MS reasons likely, to try to make you feel better about having MS.

But it doesn’t help to hear, “you do too much, you don’t do enough, you sleep too much, you don’t sleep enough, you need to rest more, you need to get out more, you need to fight more, you need to give in some…..”

It doesn’t help because we already know all this!!!!  We are constantly, daily, hourly, minutely (I don’t care if that’s not a real word- it should be,) trying to balance all this out ourselves.  And we have told you this a million times before.

“Linda, honey, listen to me!”

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Then there are the times you describe your symptoms and someone replies, “oh, don’t feel bad.  I do that all the time. If that’s MS then I’ve got it too, haha.”  Not that helpful.  Especially since what you just described is nothing like what I’ve described and I’ve described doing it constantly-daily, hourly, minutely (I really like this word.)

Then there’s “please let me know what I can do to help” and you think “awesome, great, fabulous.”  And when you say what would be helpful, say for example, A. B, C, or D,  you likely get B squared or E, F, and G in return,  And it’s really a bummer if G requires you to do  H, I , J and K just to make G work out for you.

Again, I and all the MS folks I know are super duper grateful for offers to help.   We just honestly appreciate help that looks like A, B, C and D.   As Mateo says, “you’re not listening to me!!”

Finally there’s us wanting to help someone else.  Our life has changed drastically with MS and while the changes may not be what we hoped, we still have lots and lots to offer.  So please, please, please believe us when we say “I can help by doing A, B, or C.  Will that help?  If so, I would be happy to do it.”

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But too often the person who needs the help responds “oh no, A, B, and C are way too much for you.  I will ask someone else to do that.   If you could just do D, that would be great.  D will be much easier on you.”  Despite after you have already explained why D would actually be too much for you.

At no time do I ever want to seem ungrateful.  That is why Mateo is my hero.   He makes his case in his adorable way and his mom hears him and is not offended.

It probably helps that Mateo is super cute, though technically that should not be relevant.  I just can’t help myself from admiring Mateo’s outright plea. Knowing that I would never be seen as cute if I was to boldly state “Listen to me,” I can feel better channeling my inner Mateo when necessary.

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But this isn’t the only reason why Mateo is my hero.  He’s also my hero because his argument got him on Ellen!

I’ve been trying to get on Ellen for years now and Mateo raised an argument and got on Ellen.

Just like that!

All he had to do was smile and give her a hug.  I could do that.  I may not be as cute as Mateo but I could flash a big smile and give Ellen a hug.

And if all that weren’t enough, Ellen gave Mateo his own private super hero tower of cupcakes!

And so, I’ll say it again.

“Listen, listen Mateo, honey, you’re my hero!”

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Happy Mother’s Day to my own Mom and to all the Moms out there…..

I’m not sure where the original video of Mateo came from but when I searched for it I found it on YouTube on-  thebigtinonetwork

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This MS Moment is Brought to you by the Letters ‘F’ and ‘U’ and the Number ‘2’

Multiple Sclerosis looks to Sesame Street for support

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It’s been kind of a frustrating week.  So frustrating that I didn’t have the piece of mind to write a new blog.  And so the frustrated me offers up one of my favorites…….

It was Elmo that finally did me in.   Yes, Elmo, as in Tickle Me.  But maybe that is not fair.  While he was the catalyst, it was really his helpful, female puppet friend Betty Lou that was the root of my actual demise.

It didn’t help that I came late to the magic and wonders of Sesame Street.  Growing up in the early seventies, public television was a somewhat radical concept and the new children’s programming seemed to threaten subversive and counter-culture undertones in my mom’s mind.   The Brady Bunch and The Flintstones were much healthier- nice, safe family values.

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As I grew out of my toddler years her television concerns continued.   The Partridge Family was NOT ok.   The fact that Mrs. Partridge was traveling around the country in a bus and allowing her children to perform rock concerts in front of out of control teens was EXACTLY what was wrong with the country.  At least that’s what my mom always said.

By the time she became a grandmother she relented somewhat and relaxed her television rules.   I would watch Sesame Street with my four year old nephew and we enjoyed it immensely.    I remember rolling around on the floor laughing and crying after a recent breakup with some guy or another while Patti Labelle sang “How I Miss my X” to a very sad looking X.   I thought the scene was adorable and was speaking directly to my heartbreaking soul.

“Drew-don’t you get it?   Her ex is the letter X!   Isn’t that a riot?  And look, X misses her too.  They’ll get back together- I just know they will.”

My nephew looked at me as though I was nuts and ran off to play with his toy fire engine.

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Anyway, back to modern day.   I was in the midst of a horrible month filled with paperwork, appointments, highs, lows, good news, bad news, good advice, bad advice and whatever else one can throw into a month.   After a frustrating breakdown during appointment number six, it was recommended that I see a therapist.   Thus it was that I was at appointment number seven in the lobby of the one therapist that took my insurance and answered the phone when I called.

Much to her dismay as it was her lunch hour, I was an hour and ten minutes early.   No, I hadn’t bothered to check what time I was due there.  My MS brain knew the time.

While she handed me more paperwork to fill out I asked about her practice.

“No,” she told me, “I don’t exclusively treat children.”   It was hard to believe based on the emotion charts, animal posters, blocks, and teddy bears that sat in her waiting room.

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I started the paperwork while I listened to her pack up the hundreds of Legos I noticed on the floor of her office when she opened the door to greet me.    My mind continued to swirl with all that had piled up that month and of all the things I had to do.  But it was my fault I was early (apparently my MS brain knew something that her planner and my calendar did not).  And so, with this round of paperwork done, I grabbed the thing closest to me to read.

It was a book from a Sesame Street series called Sesame Street Library.   In it, loveable Elmo ventures into the library looking for a little black puppy.   As he searches he gets distracted from his important task by story hour.

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I do that all the time.   Could Elmo have MS too?

He meets his buddy Betty Lou and, when asked, remembers his mission.  Betty Lou offers to help.   She gives him all library info he could possibly need and then produces a book called, you guessed it, Little Black Puppy.

Poor Elmo has been misunderstood.  I can relate to that too.  More evidence our furry red friend might be afflicted with a myelin damaging illness.

He explains his plight again.  He is looking for an actual puppy that is missing and happens to be black and little.  Again, the kind Betty Lou wants to help.  Back to the card catalog they go and then to the stacks where she produces a book called How to be a Detective.

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“There Elmo, you can read this book and then you will know how to find your puppy.”

It doesn’t end there.

Betty Lou is a dear friend after all and really, really wants to help so she proceeds to find several other detective books to help Elmo in his search.   Elmo excitedly thanks her.

That’s when I lost it.  In the lobby of a therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceed to yell at Betty Lou.

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“Betty Lou that is NOT helpful!!!!!  What kind of friend are you?  I know you mean well but if you really want to help, start looking for the damn dog!   How long do you think it will take Elmo to read all those books before the search begins?   After reading the books he will have get the detective kit and then start questioning people and calling insurance companies and hitting search engines and all kinds of crap that take time he doesn’t have.   Can’t you just help look in corners and yell ‘here Fido’ or something?  How bout you read the damn books and then get back to him?”

Poor Betty Lou.  Perhaps she didn’t deserve my wrath but she was not alone.  Elmo was next on my “need a good talking too” list.

“Elmo, don’t be a putz!  Tell Betty Lou what she can do with her freaking books and where to go.   Don’t stand there with that stupid smile expressing all kinds of false gratitude.   Throw the books at her and start looking for the dog.”

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I suppose the moral of the story was that you can find anything in a library.   But I have yet to find a dog there and in my current state, and not being a kid, the message was lost on me.

Perhaps my outburst caused the therapist concern.  She called me in and handed me ten more pages of paperwork to take home and fill out at my leisure.

She asked me what I was looking for, therapeutically speaking.  Then she told me where I could research the answers to what I was looking for.

She recommended some books.

I smiled and expressed all kinds of false gratitude, just like Elmo.

I am even more convinced than ever that multiple sclerosis has got him too.

Author’s Note- please remember that my blogs are tongue in cheek and this post is not meant to criticize therapy as a whole.  The point of the blog is to make fun of this particular appointment in a way that makes me (and hopefully you too) giggle about how frustrating it was….

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Growl, Growl and Howl

Multiple Sclerosis is ticking me off!

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While my blog and my book both strongly suggest that laughter is a valid coping mechanism, I never meant for my fellow MS’ers to think that humor is all there is.  Lots of other emotions are necessary on this crummy, sucky journey of life with a chronic illness.

For the first few years following my diagnosis, people were surprised that I wasn’t angry.  More than anger, the prevalent bummer emotion I was feeling was frustration.

How come I couldn’t figure out this or that? 

Why is everything so difficult? 

What’s wrong with me? 

What am I not doing right that makes my illness so confusing to others?

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Since surpassing my five year MS anniversary I have learned a thing or two and I find myself less frustrated.  Now I’m mad!

Really, really mad!

Furiously mad!

I no longer blame myself for anything.  Everything is MS’s fault.

In case you’re wondering, here are just some of the things that are making me mad-

People who think that the handicapped parking space is actually a rest stop for their no longer needed grocery carts. Dude, where on the little blue sign is a picture of your empty grocery cart?

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The fact that as much as I have to pee, it doesn’t seem to matter if I actually do pee because I’m only going to need to pee again, minutes later.  This really pisses me off!  (I can’t take credit for that pun. It is a quote from my sister who also has MS.)

I am beyond angry that I can’t remember if I’ve taken my medications.  It’s not that I forget that I need to take them.  It’s that I can’t remember if I took them already or not.   Since we were talking about my bladder, let’s use my bladder drug as an example.  I need to take it in the evening between 6 and 6:30 and it is supposed to help calm my bladder down so I can sleep. I never forget to take this crucial medication.  I just can’t remember if I took it already or not.  I dare say that 60% of the time I take it twice.   30% of the time I don’t take it at all.  And maybe 10% of the time I actually take it the way I am supposed to. (I’m not mad about completing that math- I’m actually impressed as math skills were the first thing to disappear from my MS brain.)

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And I’m also mad that many people who read the above and who don’t have the same issue are going to come up with little tricks to help me fix this problem.  And I’m madder still that the tricks won’t work.  Believe me, I’ve tried them all.

While on the bladder subject, I’m mad that because of the above problem, my bladder doesn’t let me fall asleep until at least 11 or 12 at night.  Since I need 10-12 hours of sleep daily just to function, I’m mad that I am usually starting my breakfast when the rest of the world is washing their lunch dishes.

I’m mad that since MS requires me to eat healthy, I’m munching on what are supposed to be green seedless grapes.  Yet I’m still pulling something seed-like out of them.

I’m mad that I spent a ton of time last week organizing, refilling and picking up my prescriptions only to get home and realize the ones I needed the most, I didn’t refill.  And if that wasn’t enough to tick me off, I’m angry that the next day when I set out to do a bunch of errands I forgot to do the main errand which was to pick up the previously forgotten prescriptions.  I had forgotten them again.  It wound up taking  me three days to get the pills I needed and I’m not even sure I have them all!

I’m angry that my hair is super greasy.  What does that have to do with multiple sclerosis you ask?   All the stylists say you shouldn’t wash your hair everyday but every day I forget if I washed it the day before and thus wind up washing it again, every day.

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In the world of chronic illness you need to save and copy all of your important paperwork. I know this. I’m super organized and used to be a master multi-tasker.  Yet in the last month alone I have lost three different important pieces of paper and forgot to copy another important set of paperwork. So yes, that makes me furious,

And it makes me furious that people look at me and say “you look fine to me” and when I describe how I’ve lost such important things they smile and say I’m just spacey.  No, I’m not. I used to be spacey.  I know spacey.  This is not being spacey.  This is the result of a super crummy, sucky illness called multiple sclerosis and that ticks me off!

Phew…I feel better sharing my fury with all of you.   These are only some of the things that make me mad and I and my fellow MS’ers can easily come up with more.  And most are way more serious than seedless grapes that aren’t really seedless.

The question becomes what to do about this anger?

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We could get violent but a criminal record won’t really help us much.

I prefer to take a lesson from my youngest nephew.  He’s 2 and is learning to talk.  Sometimes he doesn’t have the words he needs to express all of his emotions.  So when he gets mad he’s taken to letting out a scary growl.

He’s pretty good at it actually.  If you weren’t used to it, you might think a big scary bear just entered your living room.

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The problem is that he’s too damn cute.  I know the growl is supposed to let me know that he is angry but instead it just makes me smile.  So I started putting my forehead against his little forehead and growling back.

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Seeing his crazy aunt growl too makes him laugh which makes me laugh and before you know it, we are both making silly noises and silly faces and howling with laughter.  Like that, this adorable little guy has gone from mad to silly to funny.

Ahhh, to have the spirit of a two year old.    The thing is, it works.  That quickly, his mood can immediately go from fury to happy (or at least happier,) when somebody makes him laugh.

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It works for him and I’ve learned it can work for us too.

Keep laughing friends.

Get ticked off, get fearful, get sad but when you can, get laughing too.

I promise you’ll feel just a little bit better….

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If you need help finding things to laugh about, check out MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis for some humorous inspiration….

 

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Images of my cute nephew courtesy of his mom…

 

 

The World is coming to an End Part 1

Multiple Sclerosis is uncool

 

The world is coming to an end!

Perhaps that statement is a little extreme.  But when I saw the commercial that was my first thought.

What commercial you ask?

The one where Henry Winkler tries to get people 62 and older to contact him about a reverse mortgage.

You remember Henry Winkler of course; he was the coolest of the cool.  He was the Fonz and no one was cooler.  By his own admission, Elvis was close but that was all,.

Fonzie wasn’t just cool for the 50’s, the time period when Happy Days took place, but for the seventies and eighties too.

Personally, I was never cool.  But I was somewhat smart and as a somewhat smart person, I knew how to recognize cool immediately, even in my own family.

 

When I was 10 I had an adorable male cousin who was 6, always in trouble and funny.  And I just knew he was cool.  So cool that when my aunt bought him an Evel Knievel doll for Christmas, he had no qualms about announcing that he was disappointed as he already had it.  And none of the adults thought that was rude.

 

I then horrified my family by stating that I would love to take it off his hands.  It was not cool for a 10 year old girl to want to play with an Evel Knievel doll.  But, being smart, I only wanted the doll so it could be my Barbie’s new boyfriend. And how much cooler could Barbie be than by dumping Ken and taking up with Evel Knievel as a new boyfriend?

 

Now I’m in my forties and being cool or uncool isn’t as important, or so I thought.  But Henry Winkler being a spokesman for something only available to people over 62????  That is very upsetting and very, very uncool.

Since I’m not in my sixties, not quite yet anyway, my reaction to this commercial was a little drastic.  But the most upsetting part was when Fonzie said those who called and requested the free reverse mortgage packet would also get a free magnifier with an LED light so they could better read the info.

Why was this upsetting? Because I had just bought one a few months ago!!

Yes, I already have a magnifier with an LED light and I actually paid for it.

 

Yes, I was offended that my over 62 friends could get one free when I had to pay for mine but the bigger issue is when and where did I start needing something like that?

The even bigger issue is when did Fonnzie lose his coolness and what does that mean for the rest of us who aren’t cool but need people like him to help us through this uncool world? I worry that when Fonzie is no longer cool the world as we know it has likely come to an end.

One of the many super sucky things multiple sclerosis has done in my life is to make me feel as if I am aging rapidly and in confusing and upsetting ways.

One minute I’m a child and “I need to go potty RIGHT NOW” and in another minute I’m an old lady who “is feeling a little unsteady sonny, can you help me cross the street?”

 

And this concern shouldn’t be a cosmetic one but let’s face it, it is.  Last spring I got carded buying a bottle of wine.  Only six months later I was walking my three year old great nephew down the street when a neighbor asked if he was my grandson.

I’m used to being uncool.  And I know that MS is a very uncool illness.  To help me better cope with it I need the cool reminders of my youth.

I need to know that MS hasn’t robbed me of all of my most important skills.

I need to know that I still know cool when I see it.

MS=Not Cool

Henry Winkler advertising products for the older crowd= Not Cool

Fonzie in his best Fonzie years- Cool

My family, friends and readers= Super Cool!

 

Guess I still have that skill after all….