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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The Curious Case of Multiple Sclerosis Part I

MS and the aging process

Me and Mrs. B

Me and Mrs. B

Hi friends-  I’m repeating this particular blog solely because a long lost photo album was just discovered and in it were pictures of me and my best toddler friend.  What better way to show the bridges from childhood to old age and back again than me and my Mrs. Beasley? 

Plus, this particular post never gets old.

Even as I do!

Road trip

Road trip

How is it even possible that an illness can make you feel like a little old lady and a little girl at the same time?    It seems only multiple sclerosis has the insanity to do just that.

The old lady part isn’t surprising; I have felt older than my actual years for some time now.   It started even before my MS diagnosis with innocuous signs such as: this former party girl no longer interested in well, partying, my not being able to stay awake until the end of a movie, having trouble getting myself up when sitting on the floor, my aches, and, of course my pains.

My MS diagnosis coincided with additional signs such as; choosing to no longer sit on the floor, engrossing conversations regarding boring medical stuff, a super sized portable pill container filled with a wide assortment of needed medications, a written list of all my medications tucked securely in my purse in case I need it but never in a place where I would remember it, and my extreme forgetfulness.

Not my pills

Not my pills

What were we talking about?

Oh yes, “my dose of thyroid medication is much higher than your dose, dear.”

MS making me feel older than I want to feel comes with the MS territory.  But recently, this illness had me feeling like a little girl as well.

It was during a road trip my dad and I were taking to visit a sick relative.  Going back to the old lady thing for a bit, my dad and I have taken a lot of road trips lately as he has (thankfully as city driving is just too much for me,) appointed himself my designated driver to all my appointments.

Road trip Portugal

Road trip Portugal

We have turned Driving Miss Daisy into Driving Miss Yvonne.  But at least my dad and I have a common taste in rock music to listen to along the drive- take that Morgan Freeman!

Usually half way through the drive to the big city my dad stops for coffee and while he chats with the counter girl, I slip into the ladies room.   This time however, we drove right past our regular stopping place.  I didn’t panic.  I had to go but not too badly and I was a grownup, I could hold it.

Forty-five minutes later though the city traffic was at a stop and go crawl.  I had forgotten about city traffic, old lady again. I tried to hold it, I really did.  I wasn’t five years old, this was silly.  But as the next exit approached, I broke down.  I was a child again.

Not my dad's car

Not my dad’s car

I think I said, “sorry Dad, but can you take the next exit, I have to use the bathroom and don’t think I can wait til we get there.”

But it came out sounding like “Daddy, I have to go potty right NOW!  Really, really bad!”

I waited for the response my dad would give me back when I was five, “be a big girl and hold it Yvonne- we’re almost there.”

Or, “didn’t I tell you to go before we left?”

I worried that he would go back to being the dad he was at that time and just pull over expecting to me go on the side of the road.  Thankfully, the seventies were over and my dad decided maybe coffee wouldn’t be so bad after all and he took the exit.

Back on the road and listening to Elvis, the side trip to a bathroom made me think of my childhood.   Not for the first time I wondered if I had jinxed myself with an illness that made me feel older than my years.

Road Trip Beach Bar

Road Trip Beach Bar

As much as I love babies now, when I was a little girl my go to comfort doll was Mrs. Beasley (who in my family thought that giving me an old lady doll would be a good idea?)   You remember her, the grandmotherly looking doll Buffy on Family Affair dragged around.

My dad drank his coffee and started to sing to Elvis.  It again reminded me of being five when he would sing Elvis songs into a hairbrush for me as he got ready for work, making up lyrics when appropriate or when he forgot the real ones.

Not my dad's coffee

Not my dad’s coffee

So, maybe the movie of this time in my life isn’t Driving Miss DaisyMaybe it is actually The Curious Case of Benjamin Button.   Maybe MS has just screwed up the natural order of the aging process, accelerating to elderly stage and then going back to being a kid.  Hopefully, this time I will be cuter.

Would anyone like to play a quick game of Candyland?  No, not on the floor, let’s use the kitchen table like the grownups do.

And then it will be time for my nap….

Not my napping feet

Not my napping feet

Road trip image courtesy of digitalart at FreeDigitalPhotos.net

Pills image courtesy of koratmember at FreeDigitalPhotos.net

Bentley image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

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Lab Rat

Of rodents and multiple sclerosisID-100155157

A super crazy week in August equals a repeat of an old blog.  This happens to be one of my favorites!

“Despite all my rage I am still just a rat in a cage..”

Bullet with Butterfly Wings, Smashing Pumpkins

According to the Chinese zodiac (and no, I didn’t just have Chinese food, that is one take out I can avoid as not being worth the calories, probably because of all the vegetables and bean sprouts,) I am a rooster.

This was surprising to me as I don’t feel like a rooster.  Unless I happen to be one of the colorful Portuguese roosters that are symbolic of justice and of, well, Portugal. ID-100278801

No, lately I have been feeling like a rat.  This rat like feeling started at the end of 2013 when I agreed to participate in an MS clinical research trial.

The company that called me said that all I would have to do was go to their office for a brief, non-invasive exam, answer a few online questions and then participate in a follow up survey.  I wouldn’t have to take any drugs or be stabbed or anything crazy.  And to thank me for my participation, I would receive a check for $115.

Of course, I signed up.  I needed to help drug companies discover ways to either cure MS or find ways to make living with multiple sclerosis easier.

I needed to help others.

I needed $115 dollars.

ID-100138845But as the day drew closer, and I was driving to the office, I started to worry.  What could they possibly want to study about me?

It had to be a scam or, at least more involved than they said.

Would they put me in a cage like a lab rat and watch me try to get out?

Would I have to run on one of those hamster wheels while they took notes?

Would they put me in a maze and offer me pellets to see if I could find my way out?

If the pellets were chocolate, I bet I could do it.  If they were broccoli pellets, forget it!

These worries lead to thoughts about how important rodents actually are in my life.

Growing up, I had a pet guinea pig that I loved.  Sometimes.  Until I got bored with him.scan0001

My parents wouldn’t go for a dog and we weren’t a cat family, so desktop pets were the only option; goldfish, a hamster my sister named Tickles, and the guinea pig.  I got to name him.

Being an imaginative and original child, I named him Guinea.

Ahh, poor Guinea.  He led a short, boring life in my basement-my mom being terrified he would get loose in the house if he lived in my room. And Tickles, little did I know how huge Tickles’ kind would be later in my life.

My current multiple sclerosis medication is made with Tickles’ Chinese friends ovary cells.  Except, I think Tickles was a boy.  Do boy hamsters have ovary cells?

It didn’t matter I realized, as this medication is a shot and I am done was done with shots!  At my next neurologist appointment, my doc and I would pick a new, non shot drug to help me fight my MS.

Until then, off to be a lab experiment I went.  And they weren’t kidding, this was easy money. I mean, an easy way to give back to other MS’ers like myself!

I didn’t have to take anything off for the exam or even get my arm squeezed to a pulp by the blood pressure cuff. And the survey was easy.  The only stressful part was all the paperwork I had to do.

They left me in an office alone while I filled it out.  And they gave me chocolates from the big candy bowl they had at the reception desk. ID-100197288

Hmmm, were they watching me while I filled out the paperwork and munched?  Was that the experiment?

The next week I completed the follow up survey, (which was about walking issues by the way,) and stopped feeling like a lab rat.

Until I got to my neuro appointment later that day.

“We could try oral med #1.  The main side effects reported with that are extreme GI discomfort (ie, diarrhea) and flushing (ie, hot flashes.)  Not everyone gets them though so we could try it and see how you do.”

“We could try oral med #2.  The main side effect reported with this one is alopecia, (ie, thinning hair.)  Not everyone gets that though so we could try it and see how you do.”ID-100128778

“We could try oral med #3.    Oh no, wait, you tried that with your last doctor and it turned out they discovered a weird untreatable heart condition that is not dangerous unless you take oral med #3.  Previous trials and data show that your heart could stop.  We definitely don’t want you to try that.”

Suddenly I felt like a lab rat again.  Trial after trial seems to be the way of multiple sclerosis.

It was at that moment that loving memories of Guinea and Tickles came back to me.

My current medication works, has side effects that I am used to and is helping me to be strong in the throes of multiple sclerosis.

Yes, I STILL hate shots.  But maybe a drug that is made from rodent cells is better than being tested like a rodent.

Apparently Chinese hamsters are made of good stuff that can help us humans fight disease.  I made the decision to stay with my current drug.  I felt confident that it was the right decision and would continue to save the day when it came to my MS progression. ID-10048159

That thought reminded me of another rodent.  One who was super strong and super brave and ready to fight the bad guy, even if the bad guy was a disease.

“Here I come to save the day! That means that Mighty Mouse is on the way!”  Philip Scheib/Marshall Barer

Does anyone happen to know if Mighty Mouse was Chinese?

Note- No rodents of any kind were harmed in the writing of this blog post.ID-10064796

 

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Why I’m Voting for Snow Miser

Multiple Sclerosis and the politics of temperatureID-10012725

Last winter was a snowy, icy, super cold one.  People complained all over Facebook and threatened to pummel anyone who complained about the heat in the summer.

I, for one, never once complained about the winter and insisted I had reserved my right to grumble about the July/August heat all I wanted.  But I’ve been good and stayed away from voicing my weather preferences.

But it’s been hard, especially when people, probably the same ones who complained during the winter, try to compare their discomfort in the heat with mine.  Trust me folks, It’s not the same.

Your misery is extreme discomfort.  My misery is misery.

Here’s a common dialogue-

Person, “how’ve you been?

Me, “ok.  Had a difficult time during the heat wave last week but am better now.”

Person, “Everyone had a difficult time during the heat wave.”

Really?

Let’s compare shall we?ID-100136480We’ll start with a point of reference.

Multiple sclerosis makes all extreme temperatures a problem.  I wrote about my difficulty with the cold and losing power after a blizzard a few winters ago.  The post was titled Could Be Minutes, Could Be Days and in it, my biggest lament was not being able to have my treasured hot tea to help me through.  A fierce winter storm attacked and hot tea was the main thing I was whining about.

True, I can’t fall asleep if the temperature in my bedroom is below 73 degrees and if I don’t have hot water I go unclean until I do; cold water in a shower feels to me like being stabbed with hundreds of sharp needles.  I get enough of needles taking my meds thank you very much.

And perhaps I’m lucky that I work from home; if you can call these weekly scribbling and promoting my book, work.  (Subliminal message- MS Madness!  buy, buy, buy.)

If I happen to venture out after a storm I do have to watch my footing on icy sidewalks, sidewalks that I am lucky to have shoveled by other people.

Snowmiser74shawn

I’m Mister White Christmas

I’m Mister Snow

I’m Mister Icicle

I’m Mister 10 below

Friends call me Snow Miser

Whatever I touch

Turns to snow in my clutch

I’m too much

From Snow Miser, in “The Year Without a Santa Claus”

So to recap- with the cold I have trouble falling asleep, can’t shower with cold water, have to be careful outside and if I don’t have power, can’t have my daily hot treat.

Now let’s look at the problems with the heat.

When the heat ramps up, everything MS wise ramps up too.

The fatigue becomes beyond belief, beyond able to manage because if I’m overheated I’m not sleeping at all.

The cognitive issues become unbearable.  I can hardly think at all.

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My lack of balance issues and loss of coordination issues greatly increase.  Everywhere I move, inside, outside, up stairs, down stairs I’m likely to fall.

I have trouble breathing and often feel like I might pass out.

What usually feels like 5 lb weights added to each leg whenever I move suddenly becomes 25 lb weights.  Thus, what are usually mild aches become downright pain.

My bladder becomes even more obnoxious than usual whether or not I’m hydrating properly.  I tried extra hydration and less hydration during the last heat wave and neither helped the bladder issues.  In addition to having to go more than ever I also covered myself with bruises from walking into the walls in my rush to get where my bladder needed me to go.

So, with extreme cold comes trouble falling asleep, no showers, no tea, trouble walking outside.

With extreme heat come no sleep, trouble walking everywhere, no thinking, trouble breathing, pain, bruises, and lots more increased bladder ridiculousness.

Maybe it’s just me, but I kind of like breathing.  And thinking isn’t too bad either.

All of the above that comes from the heat occurs even in the A/C.  The A/C helps but doesn’t solve the heat problem.ID-100171914

Funny, but the A/C does helps with the cognitive trouble as while I’m miserable the one thing I’m clearly able to think about is my cash flying out the window towards the electric company with every troubled breath I take near the unit.

For people with chronic illness there are heat remedies.

There is a cooling vest I can use.  Problem is, it is wicked uncomfortable and heavy in the house and if I wear it outside I could get shot as I look like a suicide bomber.Picture 27

I had a cooling tie once but that just cooled my neck while the rest of me overheated and then I had no equilibrium whatsoever and was even more confused.

I do have a cooling cloth that may actual work.  The problem with that?  During the heat wave I didn’t remember that I had it!   I only remembered it just now as I’m typing.

(Don’t worry.  I took a break from writing, dug into my closet, found it and will hopefully know what it is when the next heat wave hits.)

heat-miser

I’m Mister green Christmas

I’m Mister Sun

I’m Mister heat blister

I’m Mr. 101

…..

They call me Heat Miser

Whatever I touch

Starts to melt in my clutch

I’m too much

From Heat Miser in “The Year Without a Santa Claus”

Seriously, which would you prefer?

A white Christmas or a green one?

An icicle or a heat blister?

Something important melting and disappearing all together or turning into a ball of snow? A ball that you can maybe use to defend yourself if necessary or eat if you are hungry.  They don’t make delicious snow cones for nothing friends!

I live in a free country and I can prefer the cold of winter over the heat of summer if I want to.  I can even talk about the differences of each on Facebook if I want. Yet, too often people are inclined to minimize my input, challenge me or outright argue.ID-100206611If you ask and I tell you about my problems with the heat, please don’t tell me you can relate; not unless the heat makes you physically unhealthy.

And please don’t judge me if I prefer the negatives that come with Snow Miser over the negatives that come with Heat Miser.

Snow Miser just works best for me and that’s all there is too it, winter, summer, spring or fall.  But you can prefer Heat Miser if you’d like, even if I don’t quite get why you do.

Here’s the thing.  Nobody’s perfect and I don’t think for a second that Snow Miser has the answer to all my temperature troubles.   He alone, cannot save me from ongoing woes.  Heat Miser’s not without his own charms but me, I prefer the other guy.

Speaking of Snow Miser and Heat Miser, is it my overheated imagination or does Heat Miser’s crazy hair remind you of a certain Presidential candidate?

donald-trump-hair

This blog post is dedicated to all the people in the United States that are so hot all the time that they even appear red on a map!

Snow Miser lyrics are from FM Static

Snow Miser image from en.wikipedia.org-Snowmiser74shawn.jpg

Heat Miser lyrics are from Thousand Foot Krutch

Heat Miser image from watchmovies90s.com

Donald Trump image from politicalhumor.about.com

MS Child’s Play

Multiple Sclerosis no concentration

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I love games; always have and pretty sure I always will.  And no, I don’t mean people mind games, the stuff of drama and social network craziness.  I mean good old fashioned board games.

When I was 5 I was playing Candy Land with my grandmother.  Since she didn’t speak English I figured she would be clueless if I cheated.  Of course she would believe that when I picked a card with two blue squares it suddenly meant that you could jump six blue squares.  She caught me and I got a reprimand.  She spoiled me so it wasn’t too serious but I never cheated again and continued to play.

As an adult I bought my friend’s 9 year daughter the game, Barbie’s Dream Date. I would never buy a girl such a game now but I was poor and stupid then. Anyway, the idea behind the game was that Barbie had to get all these things before she could go to the prom- shoes, a dress, a limo, a date.  I was playing the game with the girl and her little brother and I was losing badly.  Halfway through the child shouted, “Yvonne, you still don’t have a boyfriend!!”

Potential boyfriend?

Potential boyfriend?

Story of my life kid, story of my life.

The point being, that I still think games are a fun way to spend some time.  But trust me; it doesn’t matter if you’re 5 or 50; if you are playing with me I’m going all in.

Turns out I’m pretty competitive and whether I’m having a wine filled game night with my friends or I’ve got a vicious game of Chutes and Ladders going with my nephews, expect no mercy.  I don’t care how cute you are.

My game closet

My game closet

This weekend however, my competitive gaming fell to a new level of embarrassment when multiple sclerosis got involved.

My cousin Kelly and her three kids came to visit.  There was Ashley, a teenager, Noah 6 and Lucy, 7 and three quarters as she proudly told me.  When Lucy came to visit last summer she offered some great MS perspectives that I wrote about in the blog, Out of the Mouth of Lucy.

On this visit we spent the first part of day one at the bay beach and after showers and some iced tea I promised to play a game with them.  The choices were Go Fish and Memory which used to be called Concentration when I was a kid.

Why do the powers that be insist on monkeying with perfection?

My preference was Memory.  I could have played the adult/host card to get my way but neither game actually had that card.

So I played the MS card which yes, believe it or not, works with kids.  I told them that my doctor wanted me to play games to help improve my memory and that argument got me the game of my choice.  Not before Lucy had a ton of questions about my doctor, my medicine, my treatment and other things but still, Memory was on!ID-100297281

This is the game where cards are turned over and you have to turn them two at a time to try to make a match.  Noah and I tied for the win with 9 pairs each.  Lucy didn’t do too badly with 8 pairs of her own but I won!

Even if I had to share that win with the adorable Noah.

The first beach and the game must have taken away some of my brain skills as later we drove to an ocean beach where they were desperate to see seals and I was desperate to show them some.  Standing on the ocean bluff I saw a grouping of birds.

They asked if the birds were seals.

“No,” I told them, “those are birds.  I’m a Cape Cod girl and I see seals all the time so I would know.”

Since everyone around us was pointing and smiling at the group Kelly wasn’t so sure.  She took the kids down to the beach where they saw, and from my perch I finally recognized, what was actually a large pod of seals.

The dots are seals

The dots are seals

What was wrong with my brain??  How fried could it get from one day at the beach?  So fried that I can no longer tell the difference between birds and seals?

This was an incredibly embarrassing faux pas that I eagerly blamed on MS.

Day two of their visit involved walking, whale watching and visiting other family and not only was I wiped out, but my company was too.  Back at my house after the long day, I emerged from the bathroom after brushing my teeth to find everyone was fast asleep.  Even Ashley, the teenager who usually stayed up until all kinds of crazy hours was completely passed out on the sofa.

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That means that either they were beyond spent or I take a really, really long time in the bathroom.

My cousins left the next morning but not before we had to play Memory one more time.  And that game was an epic fail.

I couldn’t remember where anything was at all, even the cards closest to me.

fox

If that wasn’t bad enough, everything looked the same- the fox looked like the cat, the duck looked like the dog, the lion looked like the rhinoceros.

And it wasn’t just the animal pairs that were messing me up.  The apple looked like a heart and the kite looked like the leaf.

I couldn’t even remember the card that I kept accidentally turning over as it kept sticking to my knee.leafkite

I was such a sorry competitor that the kids felt bad for me.  They kept trying to give me their pairs but I refused!

I didn’t need their cute sympathy.  I was going to make a comeback.  MS or no MS my brain was going to pull through. I would rally and sweep this game!

In the end, Lucy won with Noah a close second.  I had one pair, coincidentally the birthday cake pair, a favorite of mine.

And I think I only had that as the kids might have purposely isolated them so I would turn them over.  Either because they felt bad about my pathetic showing or to see if I really would eat the birthday cake pair as I promised if it was one of the pairs I got.

(I did nibble on it to test its sweetness but I was too overwhelmed with shame to feel like I deserved a cake, even if it was just a cake on a card.)

cake

The only thing that made me feel better was the fact that this too must be the fault of multiple sclerosis.  The more tired I got from a weekend of hanging out with awesome family and doing fun things, the more the cognitive parts of my brain were going to make me pay for it.

In my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis, I talk about how instead of the involved neuropsychological tests doctors make MS patients take to determine their cognitive abilities, they should just make patients play FreeCell instead.  I argue that would be an easier way to determine how a patient’s brain is doing.

I would like to amend that now.  Instead of FreeCell, the best way to see how a patient’s brain is doing is by getting them to play Memory with some kids.  Memory is definitely the way to go.

And while I’m furious that MS ruined my Memory playing skills that morning, it was still fun. It would have been more fun if I won but what can you do?

MS is no fun.

Losing at the Memory game is no fun.

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Having a fun time with fun people is fun.

Just make sure you get lots of rest as soon as possible.

The next time Noah and Lucy come to visit I will be well rested and it will be Memory war.

And, unlike MS, I take no prisoners!!

My blogs are always tongue in cheek my friends and I had a blast with all four of my cousins.  I may not be able to always keep up with the energy of young Noah but I’m sure going to enjoy trying!

shellshop

 

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Image courtesy of Stuart Miles at FreeDigitalPhotos.net

2 Images courtesy of my cousin Kelly

The other images are courtesy of my game closet

MS Hips DO Lie

New multiple sclerosis symptoms go musicalID-10019101

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

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

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

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

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What if they thought I was crazy?

What if they thought I was a perv?

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

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

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

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

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

Then recently, I got mad at something.

Really mad.

Really, really mad.

So mad my body started to shake.

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

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

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

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

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

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

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

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

It’s a cruel world we live in folks.

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

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

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

I felt all shook out.

I felt all shook up.

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

Did you know it’s an MS song?

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

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

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

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

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

And I felt better.

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

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

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

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

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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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