Talking Turkey on Turkey Day

A multiple sclerosis Thanksgiving post


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

In my world the song goes something like this-

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

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

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

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

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

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

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

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


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

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

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

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

Dental bills are expensive.

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

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

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

What would you bring my friends?

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


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

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

As long as I have my meds!ID-100260170

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

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

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

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

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

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

What kind of music did the pilgrims like?  Plymouth rock

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

What is a pumpkins favorite sport?  Squash

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

What smells best at Thanksgiving dinner?  Your nose

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

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

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


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

pilgrims sign

Happy Thanksgiving my friends!


Jokes courtesy of and

Provincetown photos by Provincetown settler Kristin Perry

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

Other images in order of appearance-

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MS Legs a Walking

Multiple Sclerosis checks out a nature trailID-100105023

Lest you think that this blog hiatus has been solely for resting and being a sofa bum, I offer the following experience.

(Yes I know most people use the term couch potato but due to my issues with veggies, I offer sofa bum instead; which is silly as potatoes are a veggie I actually like.  You can turn them into French fries and chips.)

Anyway, I truly did mean it when I said I was going to use this time to better balance my life and better take care of myself.

I’ve been better at drinking water and better at making myself a salad every day; a good salad with dark leafy greens including spinach, tomatoes, red kidney beans and olives. Olives are a veggie too right?  Of course I pair this salad with delicious, high carb pasta but I’m getting there.Picture 94

As fall has progressed the serving size of salad has grown and the serving size of pasta has shrunk.  Maybe by Christmas I will be ready to incorporate other vegetables?

Then there was the exercise issue, or should I say no exercise issue, which I knew I needed to change. I read an article about several lesser known nature walks within a half hour drive from me and I vowed to explore each one.  Some day.

One sunny, warm autumn afternoon I decided that was the day. I would start easy by walking the trail closest to me, one I had walked before but only partially and not for a very, very long time.  I had lunch, took my lunch meds with water and then tied my sneakers.

As I headed out, it got cloudy.  Spooky cloudy. It occurred to me that since it was the off season the trail might be deserted.  That could be creepy.  Halloween was coming up and thoughts of slasher films and true crime dramas filled my mind.Picture 93

But I wasn’t to be deterred.  I remembered the toy laser gun key chain I found outside my apartment.  I had let it lie on the sidewalk for days so the child who lost it could claim it.  When no child did I scooped it up intending to give it to one of my young friends.  But I hadn’t yet and it made a nice hideous sound. I decided to take it with me as an alarm to scare away any possible scary people I might meet.

The walk was beautiful.  Why didn’t I spend more time here?  From the bluff at the start of the trail you could see the marsh, the ocean, sand bars, sand dunes, birds and all kinds of cool nature like things.  Even without the sun the view was bright.

I needn’t have feared being alone; there were many other normal looking people walking the trail as well.  I followed the path trying to ignore the fact that water would have been a good thing to bring with me.  I still wouldn’t be deterred and kept walking.ID-100283659

But soon the water I had drunk before leaving started to catch up with me and I increasingly needed to pee.  This trail is so well kept that there was even a public restroom at one of the parking lots; a restroom that was closed in the off season.

I’m ashamed to admit this but I’ve never been a pee outside kind of girl.  Growing up attending constant beach parties I should have been.  But back then I just got good at holding it.  It was why I switched from beer to wine- wine isn’t as bladder obnoxious as beer.  I could go for long stretches of time with no problems.

Ahhh, but back then I was young and strong and so was my bladder.  We used to get along pretty well.

No worries, I thought. It looks like I’m almost to the end of the trail. That was good as my legs, much better at walking than standing even at this particular MS stage, were starting to ache.  I thought having a walking stick would make it easier for me but there were none to be found; I had been looking. Every branch was either too big, too small or too attached to a really old tree.ID-100146491

At one point I passed a woman also walking.  She had a bottle of water AND a cane.  She had prepared much better than I did but I bet she wasn’t carrying a toy laser gun key chain that makes a really loud noise.  Hey lady- how prepared are you??  Do you really think that large group you are walking with will protect you when Jason or Leatherface come running towards you?

I was just about at the parking lot where I could get in my car and get home to a real bathroom, more water and rest.   But then I saw a sign that said Red Maple Swamp. I was intrigued.  I had never heard of this before.  Maple made me think of maple syrup which made me think of pancakes which made me wonder if perhaps there was an IHOP hidden somewhere off this path.


So what if “swamp” made me think of the show Swamp Murders that produces a dead body at every swamp imaginable.  There was just something about this path that made me want to explore it further.

I walked on.  I heard a spooky, creaking noise.  I kept walking.  I thought I saw a bear.  I grabbed my laser gun.  That would protect me.

Then I remembered that there aren’t really bears in my area.  Coyotes sure, but coyotes aren’t big and super furry are they?

It was enough to make a normal person turn around. Yet, I didn’t.  What was the draw that the Red Maple Swamp had on me?ID-100120550

Was it just the fact that this particular trail had a boardwalk with bridges and benches and even a fallen tree that I had to crawl under?  A tree blocking a path should be another sign that “your walk is over.”  But weirdly, I kept on.

I thought of resting my now hurting legs by sitting on a bench but I knew my bladder would revolt.  Luckily, it didn’t know that I was unnecessarily extending our time away from the nearest toilet.  If it had its way it would have done its thing on the side of a tree.

The trail ended on the other side of the swamp and I didn’t see any bodies or breakfast diners anywhere.    I walked back as fast as I could and miraculously managed to make it home before any attacks or accidents could take place.


Here is what I learned from this exercise venture.  Water is good.  A cane is not bad.  A toy may not be necessary.  Plan well.  And perhaps, stay focused.  Just because a sign makes you think of breakfast and TV does not mean it will lead you to pancakes and your sofa.

Still- it was a beautiful walk and after taking two Aleve I felt good.  Perhaps I am getting somewhere with this exercise thing…..

PS  For my MS friends who require wheelchairs, walkers or scooters, I’ve discovered that several walking trails in my area are accessible.  While the Red Maple Swamp trail was not, many are.  This fact is not only good to know, but good to help keep me inspired to get outside and get moving.  Now if I can just keep it up!!!ID-10087362 (2)

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Kayak Yak Yak Yak

Multiple Sclerosis on the waterID-10098500

WOW!  Time really flies when you’re resting.

When I took a break from my blog I had no idea it would take me almost two months to find the umph to write something new!  Trust me, it was not for a lack of MS ideas.  When something weird in my life would combine with MS I would write the incident down on a sticky note, intending to write about it eventually.

Now, weeks later, the weather is beautiful, I’m feeling good but am sick of sticky notes.   They’re not going to go away by themselves and so sticky note 1 (a pink one) translates into my latest blog.ID-100236758 (1)

Sometime last fall my elderly landlords gave me a prize they won in a raffle. It was a free all day kayak rental from a nearby surf shop.

When winter ended I took the prize to the surf shop to get the scoop on how the rental worked.  My thought was that since I had no way to transport a kayak, I would probably pass this prize on to someone else.

The business was owned by a couple in their 30’s who looked like the ultimate beach bums.  I say this in a loving, appreciative way.  They were tan and athletic looking and were wearing cut offs and shell jewelry.  They might even have had dreadlocks too but I can’t say for sure.

They were also very nice and very excited for me and my free rental.  They told me that they actually deliver the kayak to your kayak location of choice!!  How cool is that?  It was then that I decided I would use this prize myself.


But then the heat, humidity, crowds, mosquitoes and greenheads of summer showed up and I put off using my prize.  But when fall arrived, my friend Carly and I decided it was paddle time.  We set the day and I headed to the surf shop to make the kayak drop off plans.  This time the nice couple was not so nice.  They were suspicious and even grouchy.

“You’ve already gotten your free kayak.”


“Back in July you came in and reserved a kayak for a busy Saturday and said you would pick it up and you never showed.  We lost a ton of money that day holding it for you.”ID-100207033

Ok, I know that multiple sclerosis causes some strange cognitive issues.  I whine about them pretty regularly here in my blog.  But would MS dare to go that far?  Would MS cause me to venture out of my air conditioned, darkened cave through the crowds and bugs and take myself to a surf shop to reserve a kayak I couldn’t transport?

I know that MS does some pretty bizarre things and nothing about life with MS surprises me anymore. But seriously?

Fact was, I had started to look forward to this prize and had recently stopped my blog, telling my readers I was going to get out more and get exercise.  I needed this kayak!

I proclaimed my innocence and swore that the person they met in July wasn’t me and I must have appeared honest enough because eventually they believed me.  They admitted it might have been another woman who looked like me.   To that woman I say, “Lady who looks like me, cease and desist! Stop looking like me and when you reserve a kayak pick up the kayak.  You are giving me a bad rap!”

Anyway, the couple grew nice again and we set a time and a meeting spot at a beautiful lake.

The September day dawned gloriously- sunny, not at all hot, light breezes and perfect for a day on a lake.  Carly and I packed lunch, bug spray and bottled water and headed to the meeting spot.   I was keeping my ‘take better care of myself’ promise to my blog readers; I packed fruit.  And not just because chocolate and ice cream melt on warm days.ID-100345494

Carly and I waited for our boat.

And waited.

And waited some more.

Did I mess up the time?  Now THAT is something MS would totally do.

Was I at the wrong lake?  MS would totally do that too.

What if I messed up the time and the surf shop people thought I had kayak scammed them again???

What if they thought I was a twisted individual who enjoyed going from place to place requesting kayaks and then disappearing?  I don’t have a lot of excitement in my life but they can’t possibly think that’s how I get my kicks, could they?

I called the cell phone number they had given me.  No answer and so I left a message.  I called the store.   No answer and so I left a message.  I repeated this again, half an hour later.

Now even Carly was convinced I was the crazy lady who never had any intention of actually using a kayak; I just liked to reserve them.

An hour and half later Carly and I were about to give up when the surf folks called.  Of course they had dropped off the kayak- didn’t I see it?


They had decided to show up earlier than the meet time and just left it for me next to the rack with all the privately owned, padlocked kayaks.  My reserved kayak was there waiting for me.  It was orange.

I walked over and sure enough, there was one lone, unchained kayak with a paddle and a life jacket inside.  Didn’t I know that was for me?

Is it just me or is that not crazy? Did MS keep me from psychically knowing a kayak was there with my name on it?

Well, it didn’t have my name on it but it WAS orange, the official MS color.  Should that have been enough to let me know that kayak was waiting for me?ID-10031395

Carly thought it was weird too and assured me that on this particular issue, and only on this issue, the confusion was not due to MS but due to the quirkiness that comes from my little area of the world.  She said something like “of all the Cape Cod stories I have ever heard, this is the Cape Coddiest.”

By the way, at the end of the call the surf people told me that I would really enjoy my kayaking experience that day as it was so beautiful out.  They knew; they had been out kayaking all morning!

Anyway, once we straightened the details out, it was an awesome afternoon.  We took turns taking the boat out and even invited other friends to join us for their own paddle around the lake.

When they were done with their turns I offered them grapes- they needed to be healthy after all and Carly and I had finished the potato chips while we were waiting for the boat that was right next to us.ID-100231894

My arms have never been strong to begin with and so it was quite the site watching me hoist my butt in and out of the little boat.  But once on the quiet lake there was nothing like the soft sound the paddle made as it gently stroked the water.  I was at total peace, soaking up some natural Vitamin D and exercising!

I knew I would pay for it the next day; that my arms would be throbbing with pain from this exertion they weren’t used to.  But MS surprised me yet again.  The next morning my arms were fine.  My legs however, were on fire.

How does that work?  All my legs did was rest in the boat while my wimpy arms moved them around a beautiful lake.  Go figure.

So in the end, it was a great day.  And an MS story wouldn’t be an MS story without a little confusion to add some intrigue.

I wonder how MS will handle the next exercise adventure?????


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Scary Brain, Scary Movie

Multiple Sclerosis meets HALLOWEEN


I didn’t mean to break my promise a couple of weeks ago; the promise where I swore I would post a new blog soon.  Technically I haven’t broken anything.  My definition of soon can be very different from your definition of soon.  

But I am working on it and hope to have a new blog out, well, soon.  In the meantime, with Halloween right around the corner, I thought I would repost one of my oldest and most popular blogs.  

Get your dvds and some popcorn- we’re going to the movies!


It is the afternoon and I am shuffling around my house, trying to focus.

I have my lists; all the MS helpful tip books suggest lists.

There is the to-do-this-week list.

There is the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.

There is, of course, the things-I-should-try-not-to-forget list.

But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.ID-100236758

So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo. But then I see my computer and try to remember if I responded to that important email I received this morning.

Yes, I see now that I did but there are some more emails to read. I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead.

What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.ID-100237073

My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water.

I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again. And three plates and five minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom. How on earth am I supposed to drink eight more glasses today?

I might as well move into my bathroom.

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.ID-100362053Figures. Leave it to me to equate my multiple sclerosis to a horror movie.

But is The Fog the right horror movie? I am wandering around lost in my own little world and not feeling quite right- almost zombie like.

Yes, zombies.  Zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it’s not The Fog but Night of the Living Dead.

Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.ID-10096210

Or is it? Sometimes I just want to scream. Actually, I just want to scream a lot. Maybe my MS really is Scream? I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?

It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”

I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the disease. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.ID-100225595I remember the all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”

My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants.

Yes, Psycho is the movie. That is the one that most describes my MS. And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging.


Yes, Psycho feels right.

Bathroom again, but I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling? And that one, the sudden sharp, jab in my left arm? And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise? And here are those weird ear noises again- has my body been taken over by aliens?

That’s it! Invasion of the Body Snatchers!ID-100126087

That is definitely the horror movie that best describes my MS. It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun. Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your MS was a horror movie which horror movie would it be???????scarymoviecollage

Want to know something scary???  

MS Madness! A “Giggle More, Cry Less”Story of Multiple Sclerosis was named Indie Authors Library’s most popular book of September!  

Thank you to all my readers and Facebook friends who voted.  If you haven’t had a chance to check it out yet, give it a read.  

Giggles are guaranteed!

Happy Halloween from Myron, the myelin munching monster!

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On the Radio

Multiple Sclerosis hits the airwaves!


Hi friends-

Sorry I’ve been quieter than normal.  It’s not for a lack of ideas as MS keeps making me crazy!  It’s more because of the “not enough hours in the MS day” whine. But I promise a new blog in the near future.

In the meantime, I’m on the radio!  I bet you saw the title of this post and thought of Donna Summers 80’s hit.  But no, it’s me, on the radio.


Thank you to The Authors Show which has interviewed me and is posting the interview today only, 10/5 only, until midnight.  I chat with the host, Linda Thompson for about 15 mins and you can access it at any time by clicking this link-                                         The Authors Show

The interview talks about MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis, MS and how humor helps me.

My very best to all of you my friends!


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Convicted Caper

Multiple sclerosis goes on the run


As soon as I typed the above subtitle I started to laugh.  There are people living with MS who run, run well actually.  And often, they run races, half marathons and even full marathons, sometimes to raise money for MS research funding and awareness.

I’m not one of them.

I can’t remember the last time I ran.  That could be because it was a traumatic experience that I blocked or because MS has messed up my brain.  Anyway, if you’re a fellow MS’er who runs you have my support.

And my awe.

And my sympathy.

No, this blog is about a different type of running.

As in “on the lam.”

As in, away from the law.ID-100180737

Several months ago I wrote a blog (Lawbreaker) about how MS turned me into a criminal.  I thought that would be the end of the story.  I had repented of the unlawful sins I committed in that post and was now back to my law abiding, innocent self.  But apparently crime wasn’t done with me.

It started with my printer.

Yes, my printer.  I went to print something one day and my printer made this hideous, indefinable noise.  It sounded like- well, I can’t tell you because at the time it was indefinable.  But it was loud and scary and not very healthy sounding.

I took it to the computer store and the geek there-no I’m not being mean, I was at Geek Squad-defined the noise for me.

“It sounds like machine gun fire.”ID-100150936

And he was right. Me, who knows nothing about guns, had a printer that was set in the middle of a mob movie.

What was even more concerning about this was that it coincided with a car problem I was having.

I had to give up Gina Blue-my little blue Corolla.  She and her super leaky, unfixable roof were beyond due to go to that blessed parking lot in the sky.  I hope she is happy and at peace there.  I still miss her every day.


Anyway, my mom came to my rescue and obtained a car for me to drive.

For this, I am especially grateful.  It is a very pleasant and efficient 2008 Toyota Camry, with one quirk however.  Every time I turn on the air vents, whether for heat or a/c this mysterious white powder comes flying out of the vents.

I kid you not; you can’t make this stuff up.

I have no idea what the powder is.

People tell me I should get it tested.  I have no idea where to do that.

Yes, I’ve had the filters replaced-twice- and had the car inspected several times.  No one can figure it out.  Yet, nine months after I started driving it, my car is still filled with this mystery.

The only thing I could come up with was that the prior owners must have been drug runners and there is a big kilo of something expensive hidden in my car somewhere.  Combine that with my printer’s constant gun shots, it’s hard to know what’s what.  I feel like I’m this close to having Joe Pesci and Robert De Niro show up at my door, demanding the goods.ID-100266028

Of course, these crimes were the fault of my new car and of my old printer.  But since they are in my possession I’m probably good for some kind of accessory responsibility.  The theft charges were totally due to multiple sclerosis however.

When I started my MS blog I had an awesome web guru that set it up for me and taught me how to use it.  He told me it was important to include images in my blog (they better attract readers) and showed me where to find free images.  I started blogging.

Then I started exploring.

And talking.

And questioning.

I met many bloggers who told me they get their images from the internet, all the time. If I were to broaden my scope I could come up with super funny images that would really make my readers crack up.

Yes, my web guru said this was dangerous.  But, I figured, he wasn’t a blogger and I had a bazillion bloggers telling me this was ok, especially if I wasn’t using the images to sell anything.

(Well maybe not a bazillion but close to it.)ID-10010474

And so I started scanning the worldwide web for free images.  And then I promptly got accused of stealing an artist’s conceptual property and copywright infringement and licensing violations and all kinds of scary other things.  Two different companies wanted me to cough up the bucks to make it up to them for the two images I used without permission, ie, stole.

I pleaded ignorance.

No dice.

I pleaded “other people are doing it too.”

As you can imagine, that didn’t jive.  They came back with “if everyone you know was robbing a bank would it be ok for you to rob one too?”

The irony of that is I need to rob a bank in order to pay these folks.ID-100317005

So my defense is simple poverty which is no defense at all.  Now I’m just hiding in hopes they get sick of looking for me.  Maybe if they truly come for me and expect me to cough up money I don’t have they might just settle for my car?

If they pull it apart they might find interesting property hidden inside worth way more than unlawful use of two internet pictures.

For the record, I no longer own the printer.  I had that destroyed.  The drug running car is still in my possession however and it is still covered in an unknown, possibly illegal substance.

I’d offer to pass it along to someone but I may need it in exchange for bail money….ID-100265697

FYI- When I started this blog a wise friend told me that eventually, MS was going to run out of topics to offer up.  Well, 150 blog posts later, it finally has.  Yes, it’s true-this particular post numbers 150!

I would like to say MS is done with all the weirdness that I can exploit in my blogs but I highly doubt that.

Here’s the thing- this hot summer I have sweated, bled, cried, slept, tried to balance, laughed, griped, whined and wrote.  After doing all of this I have come to the unfortunate realization that I need to step back from blogging weekly and focus on taking better care of myself.

(Learning to run would be a good start, never know when the law will come a’ calling.)ID-100153663

I will still blog as I believe it helps me to process all of the crazy. But I won’t be on a blog schedule.  This means that a new post will be posted the next time MS does something super crazy, or I get so frustrated with MS that I have to beat something and a blog makes me feel like it’s MS I’m beating.

I hope you will still choose to follow my random posts.  The best way to do that would be to either sign up for my Feedblitz Subscriber Service or by following my Twitter account @yvonnedesousa or by following my website Facebook page, Yvonne

I will miss your awesome comments and your weekly stats.  But I hope we will still be in touch regularly.

In the meantime, please keep smiling my friends…ID-100286821 (1)


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The MS Money Suck

Multiple Sclerosis gets spending


Everyone knows that MS sucks.  You don’t need a degree to be able to figure that one out.  But, if you’re one of those science type people who need an official hypotheses I can back up this statement.

Hypothesis-MS sucks

Examination-MS patients complaining about sucky MS symptoms

Research-observation of MS patients dealing with sucky MS symptoms

Proof-MS sucks

Still not convinced?

Then there’s this; immediately after my MS diagnosis my then neurologist told me that, MS sucks. She had all kinds of fancy titles, degrees and med school debt to back her up.ID-100249751

And we don’t have to be an Ivy League grad to realize that living with MS is expensive.

Hell, living with any type of chronic illness is expensive.  Just thinking about words like insurance, pharmaceuticals, medical tests, therapy, copays, and sick time and even the cognitively slowest person (ie, dumb) starts to appreciate how costly it can all be.

Therefore we all know that MS and money clash in the poorest of poor ways.

I expected this upon my diagnosis and tried to start preparing and saving.  What did me in were the ways in which MS would leave me financially strapped that I couldn’t even anticipate.

For example, due to multiple sclerosis I am extremely temperature sensitive.  Extreme cold can be painful and extreme heat can make it hard for me to breathe.

If given a choice I prefer the extreme cold as rumor has it that breathing is pretty important.

My ideal living and sleeping temperature is 73 degrees.  And lucky for me, I live in New England and so there are several days in the year when my environment naturally drifts to 73 degrees.

Five of them, to be exact.

Yes, for 5 days a year I don’t have to worry about air conditioning or heat.


Every other day I’m using some nasty utility company to heat things up or cool things down and as such, I’m watching good green cash blow out the a/c filled window or burn up in the fiery furnace.  Actually, to make the money suck even worse, I don’t have a furnace.  My heat is electric.  And yes, the electric company loves me, the stingy money grabbers.

Here are some other unexpected ways that multiple sclerosis is super expensive.

I have the most basic of basic cell phones- an actual flip phone.  Yes, they really do exist even if they are impossible to find.  They are officially the dinosaurs of technology and I have long been convinced that they are called flip phones because people like me are constantly flipping them somewhere.

I have accidentally flipped my phone across the room several times.

And dropped it on the ground.

And banged it against a wall, car or furniture.

One would think that replacing a boring, basic phone would be cheaper than replacing a fancy/schmancy updated one.

One would be wrong.

Very, very wrong..ID-10034354

Moving on-cognitive difficulties are also super expensive.

Here are two pricey examples.

Because I’m constantly flipping my flip phone I worry about replacing other pricey electronics as well. It’s not unlikely that I will drop my laptop and so I always get the insurance protection on it.

This past January I called my geeky friends at Geek Squad and wrote down all they told me about renewing this policy.  The first thing I had to do was respond to an email they would send me on a particular day.

On that day I received the email and looked at my notes to see what I needed to do at that point.  What I needed to do was renew the policy as my notes clearly stated.  What I did was delete the email, thinking it wasn’t important.  Later I realized that the policy was canceled and now my little old computer, also ancient at 6 years old, is alone in the world with no protection and clumsy me acting all dangerous around it. ID-10075806

We are just one unexpected trip away from complete financial, technical destruction.

While trying to build up a writing career I applied for a grant that would help me out financially while I wrote the next great American novel masterpiece, you know, like 50 Shades of Grey.  I read the rules for applying for the grant several times.  Then I read them several times again.  I updated my grant submission and just before hitting send, I checked the rules yet again.

And several days later I realized I had messed the whole thing up and my submission would likely not count as I hadn’t followed the rules.  And the deadline had passed.  That little bit of cognitive difficulty cost me $5000.

(Well, $5000 assuming I would have been awarded the grant as opposed to other ambitious writers but I choose to assume I would have won if not for that damn costly MS!)

Many people with MS also live with another serious illness.  Mine is germ-a-phobia.  Yet, MS makes me constantly exhausted so I need a lot of help with cleaning. Most of this help comes in the form of disinfecting wipes.  And these wipes don’t come cheap.

Luckily I can sometimes find coupons to use for purchasing these amazing energy saving, germ killing power house cloths.  And the coupons do help, if I remember to use them.  Which, of course, I never, ever do.

While talking about shopping let’s take our meager pennies to the grocery store, shall we? ID-10043818

I try and try to be a saver and the grocery store is no exception.  But disinfecting wipe coupons are not the only coupons I forget.  I forget all the coupons.  I could deal with that, really, how much do coupons really save?

The problem is that I have picked up this bad habit of buying the wrong thing.

Even as I’m looking at an item and putting it in my cart.

Even as I bring it home and put it away.

I will still see the item I needed.

Then I open said item only to discover that it is the wrong thing and thus, unusable. I would return it for the right thing but the product is now opened and the receipt was trashed a long, long time ago.

It’s enough to make a person crazy.ID-100178602

Or, it would be if we MS’ers didn’t already feel crazy.

Thankfully, there is a remedy.

It’s called wine.

I try to save there too.

I bought a bottle recently and saw a promotion where if I save my receipts and bought more bottles I could get a rebate- $3 off two bottles, $6 off four etc.

I was so pleased by this that the next time I was at the liquor store I bought that specific bottle.  I can fight the MS money suck after all.  Wine is crucial and why not get some money back when I drink it?

I was so pleased with myself and my savings effort that I was home and had the bottle open before I realized that I had forgotten the damn receipt!

Good thing the rebate called for big bottles of wine.  I’m going to need them……ID-10012629

Hi friends,

                I would love to hear of some of the unusual ways MS is robbing your piggy bank.  Feel free to share your thoughts in the comments section below.

                Also, my friends over at the Accelerated Cure Project asked me to remind my readers of the fabulous research they are doing with the I Conquer MS project.

       is a patient centered, patient powered research initiative that needs the help of all of you!  And unlike most things MS related, it won’t cost you a penny!

Please check them out

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You Can STILL Call Me Oscar!

A multiple sclerosis transformation

ID-10057689 (3)

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?


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.


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???


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.


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.


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?


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!”

ID-10056127 (1)

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

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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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