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!

Yea!ID-10057662 (1)

 

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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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Meet Me in the Windy City

Chicago MS Summit  Part 1

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My blogs this week and next detail my unique version of the events that transpired during an MS Summit sponsored by Novartis Pharmaceuticals Corporation.

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

When I first started writing about the crazy and frustrating aspects of my life with multiple sclerosis it was to keep myself from actually going crazy.

After a lot of time and a lot of writing, I started thinking maybe I could use my writing to make a buck or two.ID-100200197

When neither of the above writing goals came to fruition but readers started commenting that I made them smile, I then discovered the real goal of writing- to help others.  Helping others is important, even if I am still crazy and poor, and thus why I keep on sharing my MS stuff with all of you.

What I didn’t realize was that every so often, a drug company does care and wants to hear what people with MS think.  To this end, Novartis recently invited 10 MS bloggers to a summit in Chicago.

How they picked their 10 I’m not sure but I was thrilled to be included.  I had never been to Chicago and couldn’t wait to see a new city and meet up with my fellow bloggers, many of whom I had met before, most of whom I followed.

Novartis asked us to come talk to them because they said we were in “the space.”

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I’m not totally sure what that means but I think it has to do with the fact that they couldn’t really invite all 2.5 million people living with multiple sclerosis to Chicago as the city isn’t THAT big.  But they could ask people who write about MS to come and then share what we are hearing from our readers and tell Novartis about it.

At first I thought, well that doesn’t seem fair.  How come I get to go and others don’t?  Then I thought, screw that, it’s a free trip to Chicago!

And I’m so glad I went.

Novartis chose MS bloggers with different experiences, different levels of progression and different writing styles and so reports from the summit can and will vary greatly.

Here’s mine-ID-100333045

I arrived in Chicago to a rainy, cold and yes, windy city.  No wonder it has that nickname.  There was to be a dinner that evening where we bloggers could visit and meet some of the Novartis staff who would be hosting the next day’s events.

I was to have two hours of sightseeing time before the dinner but the rain and heavy traffic it caused put an end to that.  I did do some sightseeing though.  From my hotel window I saw a Dunkin Donuts, which I promptly walked to get some hot tea.  Nothing says familiarity to a New Englander than a Dunkin Donuts logo.

Then I rested.

Then I had a great dinner with some great people complete with delicious pasta, free wine and crucial to top notch brain skills, chocolate.ID-100212435

The next morning started with a healthy breakfast and a roundtable by Chicago area MS specialists who wanted to talk about symptom management.  I wasn’t expecting much- hadn’t we all heard this info before?

But I was wrong.  The panel had lots of tips and so did my fellow bloggers.  We were able to learn from each other things we didn’t know, may have known but forgot, may have decided weren’t relevant, or maybe didn’t want to believe.

For example, Kegels, yoga, probiotics and water really ARE important even if you don’t want them to be.

Limiting beverage intake in the late afternoon doesn’t really help your OAB at all, especially if you are also dehydrated.

There really isn’t a treatment for cognition issues except for overall MS wellness techniques and yikes, aerobic exercises.

You can do aerobic exercises even if you are fatigued and have trouble standing which was depressing as there went both of my excuses.ID-100214898

We helped each other with different tips.  I sat next to a Novartis employee who had brought diet soda with her to drink during the summit.  My experience of breaking my diet coke addiction got to her and she switched to the free water instead.

What surprised me was how so much of the discussion focused on information from the urologist on the panel.  Ironically, as soon as she started to talk everyone suddenly had to pee.   One by one my fellow bloggers went to the bathroom.ID-100100959

I had to go too but didn’t want to miss anything.  So I tried to hold it and cursed myself for forgetting to do my Kegels.  It got hard to hold when the urologist actually said “new information about bladder control is constantly trickling down..”

I couldn’t help it.  I cracked up and elbowed my fellow blogger to my right. He got it of course.  We MS’ers know a good MS vocal faux paus when we hear it.

I was in even more trouble as the bladder talk turned to talk of cognitive issues and I certainly had to hear all of that.  Turns out my particular form of cognition trouble has to do with the executive functioning component of the brain which sounds really fancy but is troubling as there is not much you can do except to have someone close to you correct your mistakes.  Since most of the people close to me are pretty crazy themselves, I could be in big trouble.

It’s amazing I even made it to Chicago in the first place considering my executive brain non-functioning component.  Thankfully, Novartis was prepared and had smart people help me.

At this point, I really, really had to use the restroom.  But the next topic was sex and that was far too interesting to miss.  After sex came, naturally, pregnancy and since you have to have a sex life to get pregnant, I finally had a time to use the bathroom without missing too much.  I made it but barely.ID-100334880

The rest of the summit consisted of a healthy lunch, and a dialogue between us bloggers and Novartis about social media, patient interactions, what has worked for bloggers as far as reaching an audience, medical technology and various campaigns to help inspire the MS community while spreading MS awareness.

The day brought some great discussions, and not once were any particular drugs mentioned, including Novartis manufactured MS medications.   This fact made me feel as though Novartis really did want to hear from the MS community.

As the cost of disease modifying drugs continue to skyrocket and patients continue to be VERY concerned about the motivations of the drug companies, it was good to feel heard.  I hope me and my fellow MS bloggers provided some great information that came directly from what we are hearing in “the MS space.”

If we didn’t, well, we at least had a blast!

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Tune in next week for the rest of the weekend adventures including getting kicked out of a cab, a major MS realization and how MS and I survived twelve hours of airport frustration!

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Lies, Lies, Lies, Yeah-Re-release

A now old, but new MS symptom

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So my computer is back and I’m getting caught up.  And I’m finally rested and refreshed after a fun, paid weekend away in the windy city.  More on that later in the month as I can’t go to Chicago without coming up with at least one blog about it!  

But this week, as I try to get my act back together, I offer a previously published blog. But don’t worry- it’s one of my favorites and includes a picture of a baby so funny looking that she is actually cute.  And don’t fret, I’m not making fun of someone’s baby.  The baby is me.

By the way, I want to tell you about a slight change with my future posts.  The blog powers that be tell me that Thursdays are a better time to post.  And my writing group is back to meeting on Friday mornings. So, starting next week, my posts will be up by Thursdays at noon.

Thank you friends- you guys rock!

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Lies, Lies, Lies, Yeah-7/12/13

No friends, this is not a blog about lame 80’s music.  And I am sorry if that song is now stuck in your head.  Actually, that is a lie.  Misery loves company and since it is stuck in my head, it might as well be stuck in yours too.

This is a blog describing how multiple sclerosis has turned me into a liar.  Just when I thought MS symptoms couldn’t get any stranger, I started lying all over the place.

Often the more you talk, the more likely it is you might lie whether you mean to or not.  And unfortunately for me, I am an extreme talker.  This is not necessarily an MS symptom.  I was just born this way.

As a baby, my parents actually took me to a pediatrician as I NEVER cried and they thought that was weird.  When I would wake in the morning, instead of crying for attention, I would talk away.

baby pic0001“Bah blah, goo goo bah bah, mme bbee bee nah, fro bah bah bah, goo mim ma me nah nah bah.”

This basically translated to, “hello, big people, I’m up and starving.  Can I have fruit loops like my sisters instead of a boring bottle?  Oh, and you won’t believe what’s in this diaper!  Big people, hello?  Where are you?”

As I aged, the nonstop talking continued.  Even so, I tried to be an honest person.  There was an occasional little fib here and there to spare hurt feelings.  But usually I was smart enough to spare feelings in a way without lying.

“It’s not that that skirt looks bad exactly.  It’s just that I think you can find something far more flattering than a size 2 on your lovely and voluptuous size 12 frame.”

But the older I got, (and now I know as I aged MS was starting to creep around my brain), keeping an ‘honesty is the best policy’ mindset became harder to maintain.  Coincidence?  I think not.

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If someone told me something was a secret, you couldn’t waterboard it out of me no matter how hard you tried.  But if you didn’t specifically use the word “secret,” I was an open book.  My filter was gone and I lost the ability to think through what to say when, while I was talking nonstop.

This mostly involved covering up other people’s little fibs.

Person A “I told Person B such and such so as not to hurt her feelings.”

Person B “did you know that Person A thinks I am fantastic?  What did he tell you about how fantastic I am?”

Or there was this example.  Person A would tell me something.  I would tell Person B.  Person A would flip out that Person B knew what I knew and would ask me did I tell Person B?

“Ahhh, I don’t think so, I’m not sure.”

Or Person A would tell me something and then Person B would ask me what Person A said.  I would get confused- should I sugarcoat Person A’s words?  How do I do that?ID-10093619It became really traumatic and so I would end up saying, “Person A- Oh no, they didn’t tell me anything.  Who is person A again?”

Allow me to state again that MS has destroyed any filter I may have.  Don’t tell me anything you don’t want me to repeat.  Trying to remember what not to say when just adds more stress to my already stressful day.  Cognitive difficulties lead to my needing to lie.  I don’t know anything.

The lying increased with the “how are you questions.”  If I answered truthfully, perfectly healthy people would respond, “I know what you mean, I get that all the time.”

Or, with something like, “I know you say you don’t feel well, but you look great,” which pretty much says to me that they think I am lying anyway and then I was even more confused.

I started just answering “I’m hanging in” which must be a total lie as I don’t even know what that means.

Then there are the other little lies I have noticed MS making.

The drug company, “are you ready for a refill of your injections?”

“Oh yes please, I can’t wait.”

Your friend, “that won’t be too much for you, will it?”

“Of course not.” Lies, lies, lies, yeah….

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Your doctor, “are you maintaining a healthy diet?”

“Absolutely.”  Not exactly a lie if you put a tomato on your double cheeseburger.

The cool, casual acquaintance, “you look beat- you must have had an exciting night.”

“I did!  It was a blast!”

And by exciting I mean I didn’t fall asleep until the very last commercial of the show I was watching.  To me, that is exciting.

Little by little I was telling more and more lies and I only recently discovered this fact.ID-100162874

It has been a hot, humid, crazy, stressful month and I didn’t have any ideas for a new blog.  I decided I would just post an old blog for this week.

And then I remembered that last week I had promised my readers a brand new blog.  Reposting something old meant that I was lying to my beloved readers.

The very idea caused me to stress.  I analyzed lying as a whole.  I became increasingly fatigued.  I couldn’t stop thinking about lying.

The lame Thompson Twins song (there were three of them by the way- twins was a total lie) came into my head.  I started writing to try to get it out.  And before I knew it, I had a new blog.  So there you go.

Sometimes multiple sclerosis has a way of working itself out.

Of course that is a total lie but what would this blog post be without one or two?

PS- Want to read a funny, inspiring book that will make you giggle and giggle over and over again?  If so, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis delivers!  That’s no lie- the reviews prove it!!

Happy Fourth of July dear friends!!!

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FYI for 6/26/15 Post

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Hi friends- 

Due to computer issues I may not be posting a blog this week.   I will be back at blogging as soon as I get this issue resolved.

Enjoy the rest of June my friends…

Yvonne

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Crasher

A new multiple sclerosis mode of being

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And then there’s Crasher.

You KNOW Crasher.  I know you do.  Deny it if you want but I bet you’ve got the bruises to prove it.

Crasher is not Crasher as in “I’m so wiped out. I’m just going to go crash for the next five days,” although if it was, that would be a good Crasher.

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And no, Crasher is not responsible for crashing the best parties or events, crashing them early, while the alcohol is still free.  Oh, how I wish that was the Crasher I’m talking about.

No, Crasher is yet another multiple sclerosis symptom that takes over your whole body and turns you into a whole other mode of being.

I’ve mentioned some of these before.

There is the child I have written about.

“Daddy- I need to go potty RIGHT NOW!”

This child intersects with the grandmotherly little old lady.  “Can you get me a sweater dear?  I’m just going to drink my tea and rest my legs for a bit.”  (The Curious Case of Multiple Sclerosis Part I)

There is Oscar- content to be mean, grouchy and if necessary, to hide away in our personal trash cans in order to protect those around us from our green, foul mood.  (Call Me Oscar)ID-100217470

There is the zombie mode- shuffling about and existing as one of the super undead.  (A Zombie Goes Down the MRI Tube)

Speaking of super, resembling but quite different from the zombie mode is Super Blah- a super hero of utmost strength of unthought and undetermination.  Capable of coming up with no thoughts of your own and if any thoughts do arise, they probably aren’t even made up of real words but fake ones like unthought and undetermination.  (Super Blah)

But now, I have finally accepted and proudly outed- Crasher!

Before this, the Crasher mode was just called clumsy, something I had been my whole life.

As a child, a real child not an adult in MS child mode, I was always covered in bruises, mostly from falling off of stuff I climbed to prove I wasn’t clumsy.ID-10061137

On a high school ski trip the instructor pointed to a tree way to the left of me on the beginner trail and said, “you’re not going to ski into that tree are you?”  I assured him I wouldn’t just seconds before I promptly did.

(Okay- that didn’t really happen to me.  It actually happened to a friend of mine but it certainly could have been me if I wasn’t already sliding down the bunny slope on my butt.  But it was too good an example not to share.)

At the best job I ever had my coworkers took to calling me “Grace” as I tripped around the office, dropping files left and right..ID-100207487

So it was not surprising that desperate for comfort upon learning of my multiple sclerosis diagnosis I asked the neurologist if MS was the reason I was so clumsy.  My friend giggled when the doctor replied “absolutely not.”

But that was five years ago and things that we know about MS have drastically changed.  And here is one thing I do know about MS– it completely, unequivocally, absolutely ramps up my clumsiness!

It ramps it up so much that my clumsiness becomes it’s own persona, way tougher than “Grace.”  “Grace” will no longer do.  Crasher is definitely more like it.

Clumsy is as clumsy does and in my world, what clumsy does is cover me with bruises sometimes just walking across my living room.

Crasher shows up when I am particularly fatigued physically but also incredibly stubborn mentally.

On these days, when I refuse to give into the tiredness and try to go about my world, that’s when I turn into Crasher, tripping, dropping things, throwing things, walking into things, etc.

When I’m perfectly calm and without provocation suddenly throw something I’m holding across the room, that’s Crasher.ID-10043444

When I stub my little toe on the coffee table leg three or four times in one day, that’s Crasher.

And when I walk into a wall just because it’s there?  You guessed it- it’s Crasher.

When I unexpectedly fall and crash into the ground? Let’s say it together-Crasher.

Before I totally blamed the Crasher persona on MS, I decided I needed to know the truth on this one. Was that early neurologist I saw five years ago correct?

I am stubborn and so I decided to do some research. I am proud to report that what I discovered was that she was WRONG!!ID-10056127

Right away I found a website (The McFox.com) that described an early MS symptom as “uncharacteristic clumsiness.”  What does “uncharacteristic” mean to you?  To me, it means I’m blaming MS!

Just one website didn’t seem conclusive enough and so I researched further. (I was likely in one of my random “think I’ll goof off on the web modes”- a cross between the zombie persona and Super Blah.)

I found that HealthyWomen.org talks about the MS symptom of balance and coordination problems although it would seem to me to be more of a lack of coordination problem but who I am to disagree with the web.

And MerckManuals.com refers to “clumsiness of leg or hand” as one of the many symptoms of multiple sclerosis.

So there you have it, Crasher is yet another multiple sclerosis personality that we MS’ers must accept.  MS’ers are starting to have more personalities than Sybil.

But don’t fret, I’m used to Crasher.  The awkwardness of my growing up years has prepared me well.ID-100200833

I’m used to being covered with so many bruises that I look like rotten fruit.

I’m used to tripping on air- I’ve almost perfected it actually.

And I’m used to crashing- both into things and crashing as in resting after I have crashed into things.

I’m tough. Crasher is no match for me!

But the greatest comfort I take from this knowledge? Ha first neurologist- I was right!

And I didn’t even go to medical school!

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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-

bday cake

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..

birthday fun

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.

Picture 90

(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.)

Picture 91

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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Sunny D is Not Just a Drink

A new multiple sclerosis sting

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I’ve been lucky so far on this MS journey, at least when it comes to pain.

There are many different types of pain, manifested in many different ways, to those of us living with multiple sclerosis. How can there not be since MS is basically something no one knows what, attacking our nerve ending which are responsible for all types of sensations?

For me, for the most part, the pain I feel, physical pain I mean, comes in the form of super duper achy aches.  Give me two Aleve and a prescription medication for heartburn since Aleve shreds the heck out of your guts and I’m usually good to go…ID-100326652

That was until just last week.

I wish I could say that everything that happened last weekend was a conscious decision on my part.

I wish I could tell you that I had the natural vitamin D vs. potentially cancerous sun rays discussion going on in my brain.

I wish I could say that when I looked up at the partially cloudy sky I made an educated decision.

I wish I could tell you that I actually thought about MS or pain or my skin or the sun.

But honestly, there was no room for these thoughts on this particular Saturday.

And why should there be?  It was barely spring.  And it was a yard sale.

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Some acquaintances had decided to hold a yard sale right in my own rented backyard.  Being the downsizing cheapskate I believe I am, I asked to join them.  That way I could make some money, get rid of some stuff, and wouldn’t have to even advertise- they already did!

I got up early and carried my boxes outside to join my new friends.  And it was actually fun.  I enjoyed their company and tried not to get too freaked out when their junk sold way better than my junk.

I kept hydrated and smiled and peddled my wares and enjoyed the early May breezes and was generally pleased with how it all went.

I thought $40 (mostly in quarters and crumpled singles) was all I got from the morning.

ID-100142636But I was wrong.

The next day I noticed another gift.

It was a wicked sunburn on half of my body.

Not even the good half.

By half my body I mean one bright red arm and one arm still pale as ever.  Way paler than it should be considering the hearty Portuguese stock I come from.

At least my face was spared the half and half look. And by spared I mean that both sides of my nose as well as the tip were sporting the “Rudolph on one foggy Christmas Eve” look.

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But what was even worse than the reindeer games image was the pain.   It was the pain that caused me to notice the sunburn in the first place.

Waking up the morning after the yard sale my right side felt like it was on fire.  I’ve had sunburns before- I grew up on a beach.  But never had I hurt like this.

What was really horrible was that the sharp, spiky pain seemed to radiate from inside my body, likely from the nerve endings themselves.  How did the sun’s powerful rays penetrate through all my fat cells all the way down to the nerves?

My whole right arm felt completely useless and it hurt like a motha… well, let’s just say it hurt a lot.

I had never felt throbbing quite like this before and it wasn’t long before I had something to blame.

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It wasn’t, of course, my fault for not remembering to use sunscreen or for not noticing that what sunscreen I did have had expired five years prior.  No, this was the fault of multiple sclerosis.

Just like climate change, world hunger, communism, capitalism, consumerism and any other “ism” you can think of, my sunburn was now added to the list of things I blame on MS.

Only MS can mess up what was a fun day outside on a somewhat cloudy morning and turn it into a new level of pain and unattractiveness-trust me, the Rudolph look only looks cute on Rudolph.

But even in this unfortunate, new issue, I was fortunate.

While MS sucks and is horrible and does horrible things and causes even more horrible things, sometimes, just sometimes, it calms down for a while too.  Two days later and the hurt was mostly gone and the redness was a little less bright.

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And somehow I actually missed the whole disgusting skin peeling aspect that follows a sun burn.  And so, in this too, I try to be positive.  The worst of this new symptom had passed and lesson learned.

Perhaps I could go on to try to better appreciate the sun this summer.  Especially since now I had $40.

That should be enough to buy some decent sunscreen.

Maybe…

Hope all of you my friends are having a safe and healthy fun start to the summer season!  

To get you through do what I’m going to go- grab some sunscreen, ice water and the nearest AC!


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Keep Using Your “I” Words, Baby!

A Multiple Sclerosis VOCABULARY

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I had three ideas for a new blog this week.  Unfortunately, I also had a very dirty house.  Being a germ-a-phobe, the dirty house won.  

So I’m posting an oldie.  In honor of World MS Day next week, I wanted to post a favorite. (More on World MS Day at the end of this post.)  This blog is such a favorite of mine that I sent it to the editors of Something on our Minds Volume II where it was published.  

I hope you find it helpful my friends……

Some people say that good things come from bad.

Many others say that is crap.

I’m not about to earnestly debate this argument as my brain is just too fatigued to give it much thought.  But I will honestly say that one thing good that arose from my multiple sclerosis diagnosis was the increase of helpful vocabulary words beginning with the letter “I.”ID-10058081

Before MS, if someone were to ask me to quickly name a word that starts with the letter “I,” I would have to think for a few seconds.  Then I would say “Indian” which is no longer politically correct, and since Native American doesn’t start with the letter “I,” would be wrong anyway.

If I was given more time I might come up with igloo or iceberg, maybe iguana, but I would really have to think for a bit.  Pretty sad since I was an English major in college.ID-10049794But since MS, I know many words that begin with the letter “I” and some are actually helpful in my MS world.

I don’t mean “injection” which is technically helpful in a healthy way but is definitely not helpful in a real life way.

Nor do I mean “interferon” which I had never heard of before MS, and do not know what it means, but know that it is printed on my box of “injections” right over the words “Chinese hamster ovary cells.”

Nor do I mean “infusion” which I am sure I had heard of before MS but never really thought too much about.ID-10063511

The “I” words that have been added to my post diagnosis lexicon and which are truly accommodating are “ish” “ing” and “icth.”

Let’s start with my favorite-“ish.”

I love “ish.”

“Ish” rocks my world and absolves the normally precise me from all responsibility.

“I’ll be there around 9ish,” can actually mean, “no I won’t, but I’ll give it a good try.”ID-10019322

Or, “I have no idea what time I will get there and cannot even begin to try to rationalize how my morning will proceed and how fast I might be moving, but I will roughly aim for some time around 9 in our particular time zone.”

On a stretch it can even mean, “We didn’t state a specific time, did we?”

The reason why “ish” is so good is because not only are you not committing yourself in any way, the ishness of “ish” can be broken down by several factors.

My view of “ish” is not your view of “ish” and 9ish can be anything from 7 to 11 and there is nothing anyone can do about it!

It doesn’t just work on time either.   When someone asks my age, “30ish” or “how often do you exercise, “often, I try to exercise once or twice a week, ish.”

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Do you see the beauty of “ish?”  I never appreciated it until my diagnosis but I am thrilled to have “ish” to help me out.

“Ing” is great to use when I try to describe symptoms that are totally indescribable.

My ears are making this “ringing,” “buzzing,” or “clopping” sound.

My fingers are “aching,” tingling,” and “vibrating” all the “freaking” time.

My foot is “dropping,” my legs are “weakening” my head is “pounding,” my brain is “fogging,” my eyes are “blurring,” my skin is “itching,” my stomach is “twisting” and my bladder won’t stop “going.”

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“Ing” doesn’t let me off the hook as much as “ish” but it sure makes it easier to explain what is going on in my body even when I have no clue what that is.

But if I’m really too tired to come up with an appropriate “ing” word or there are just too many too sort out, then the best word is “icth.”  “Icth” just sums it all up.

Some days, you are just not with it and MS is doing its best to do you in.   Well meaning people may say to you “well, tell me, specifically, how do you feel?”  Sometimes you just don’t have the specific words they need to understand.  So I just say I feel “icth.”

It’s important to let out a little breath when you say you feel “icth.”  If you are not sure about “icth,” then please allow me to tell you it is the next step up from “ick.”

Anybody can feel “ick.”  But when “ick” is not encompassing enough of your overall ickiness then you must use the word “icth.”  “Icth” is “ick” times twenty.

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Not only does “icth” describe your ickiness combined with all your other symptoms combined with your overall exhaustion, it also says “stop asking me how I feel because I don’t have energy to explain it to you!”

MS friends, far too many times, “icth” is my favorite word.

May you not have to say “icth” too often.

But if you do, then I’m glad “icth” is available for you too.

Friends, World MS Day is 5/27/15!  This is a day where MS’ers from all over the world come together to share our struggles, our symptoms, our strengths, and our stories.  It’s a day for all the way over 2 million of us.

Don’t know what you should do on this day?  Well check out the World MS Day link for ideas.

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