Guest Post- MS Travels to Nevada

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Doing something a little different my friends. This blog today is a guest blog by a colleague, Tamara Carter. She wanted to share what the state of Nevada has going on in the way of fighting the MS beast. To be honest, I’d never thought of Nevada as a game player in this particular battle. When I think of Nevada I think of wedding chapels, Elvis impersonators, slot machines and, well, games. Poker to be precise. Turns out, this gaming state has a lot more to offer!

Read further to learn more….

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Las Vegas Events for people with MS

The root cause of Multiple Sclerosis may not be known yet, but know that you’re not alone. As stated on the website’s bio page, over 400,000 people are living with this illness and 200 people are diagnosed every week.

If you or your loved ones are diagnosed with MS, there’s no need to hide from the rest of the world. People suffering from MS need to make the most of their situation and try to live life to the fullest, and most importantly with a smile. Engaging in enjoyable activities is just one of the ways thousands of MS suffers counter the rigors of the illness.

First, there’s the Nevada MS Walk event that encourages people with the disease, as well as their loved ones, to bond on a walk for a worthy cause. This walk changes the world one step at a time by unify everyone in mission to helping find a cure to MS. With every walk, with every dollar raised, we get closer to finding the root and cures for MS.

Additionally, there’s the “Lights, Camera, Take Action on MS” where Southern Nevada service providers attend the event in order to answer the questions of people and at the same time offer help. Last year, actress Madeleine Stowe attended the event, which was graced by over 12,000 Southern Nevadans who were diagnosed with MS, where she told her story about how she took care of her father during the latter stages of his illness. Often she spoke about the funny side of her father and how he made light, and the best of his situation, encouraging others to do the same.

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About 23 years ago, there was no medicine approved for MS suffers. However, now they are about 13 different types of medicine are already available to help patients treat this disorder that makes the immune system eat away the protective covering of the nerves. And it is at events like these where people can find the latest developments regarding medicine and converse with other people who have been affected by MS freely, while finding solace in the fact everyone is steadfast in finding an end to the disease.

While Nevada used to be best known for its noisy and flashy casinos in Las Vegas but thankfully, it is starting to become a place which hosts a more varied entertainment portfolio, including MS-related fundraisers and awareness initiatives. Perhaps it is Nevada’s way of driving more traffic into the city, since its revenues have been largely effected by online gaming providers that not only offer convenient gameplay to their players but also a variety of games that get updated regularly as well as bonus perks for people who buy their credits online. Whatever the reason is for Nevada hosting events that have the potential to change the world, the truth of the matter is that it is doing great work and having a greater benefit than just increasing revenues.

Thank you Tamara and thank you Nevada!

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Lazy Bones

An MS think tank

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

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

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

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

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But the lazy bones line has got me thinking.

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

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

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

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

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

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

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

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

Who’d thunk it?

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

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

Here are some of my thoughts-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Just another Weird, Weird Day

“My MS is not your MS and your MS is weird.”

Brilliant, semi-famous quote written by me

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Your MS is weird.  And sometimes, I suppose, mine is too.  Life with MS is certainly weird.  And then there are weird people and weird circumstances.  Recently, all this weirdness converged on what should have been a relatively normal, unweird day.

I dropped my mom off for a doctor’s appointment and then left to run an errand.  When I returned to the office and she wasn’t ready I made myself comfortable with an engrossing book. As I sat my throat grew dry and I noticed a water cooler in the corner of the waiting room. I kept meaning to drink some but just couldn’t leave my compelling read.  After this sentence, no, after this paragraph, definitely after this chapter, I will get up and get some water.ID-10056064

But my mom poked her head into the room and nodded at me, which caused the nurse behind her to motion me to follow them.

This was concerning. My mom is very private and hates medical stuff.  If I was needed in her appointment it could be a bad sign.  Turns out, it was simple miscommunication.  Her wave was meant to tell me that she wasn’t quite done but the nurse took it as an invite and insisted I join them.

“Well, you’re here now so you might as well stay,” my mom said.

I sat in a chair opposite the doctor’s desk and my mom sat on the table.  The doctor entered and my mom introduced us. I was surprised by his strong Greek accent as my mother had never mentioned it before.  I could barely understand him but it didn’t matter- it wasn’t my appointment.

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Since I was stuck there I thought I would listen even if I only understood one out of twenty words he said.  I managed to grasp that he was talking about sodium; ie salt, ie the stuff that makes fast food taste good.  He wanted my mom to cut down on sodium.  He wanted this so much that he kept talking about it, a lot.

At least I think that’s what he was talking about.

But he seemed to address most of his talking to me.  So what if I happened to be munching on potato chips- again, it wasn’t my appointment.

(Kidding.  I wasn’t munching on anything but was completely regretting not grabbing that water when I had the chance.)

He told my mom he had something for us.  He left and came back holding a loaf of bread.  He manipulated the plastic bag the bread came in so that a slice was near the opening and he insisted I take it and split it with my mom.  It was an order and I guess the reasoning was to suggest we now eat this particular brand of low sodium bread.ID-100151613

I gave my mom half the slice but didn’t know what to do with my half.  I nibbled on it because that’s what the doctor seemed to want but it was like sawdust in my mouth.  I was trying not to choke.

There was a trash bin in his office but throwing my half away seemed rude.  Without salt it didn’t seem very crumbly. Should I scrunch it up and shove it into my pocketbook?

The whole thing seemed odd.  I’d never had a doctor, even one of my own, offer me a snack before.   I thought of how when I go to church and my priest offers me bread he’s polite enough to also offer some wine to accompany it.  Could I ask this doctor for wine?  What’s the sodium level in wine?

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He then said that we should only get 150 mg of sodium a day.  While he was stating this he was also pointing to a chart that recommended 1500 mg a day.  I was more confused than ever and was now super afraid of salt and hoped he knew the Heimlich as I tried desperately to finish my half slice of bread.   This seemed like major medical weirdness to me.

Outside his office, it was past lunchtime and despite the snack my mom and I were both hungry.  But I couldn’t think of a single place to go for lunch that wasn’t a salt trap designed to suck us in.  My mom suggested a place and I agreed to go there but was firm.

“Mom, we can go there but I’m going to tell the waitress that we don’t need menus as we will have water and plain lettuce for lunch, no dressing.”ID-100182547

“Good for you,” she said.  “I’m getting a menu.”

I stopped in front of the placard that said “Please wait to be seated” and read the specials board looking for anything that wasn’t filled with evil sodium.

My mom made her way into the restaurant and chose a table.  What was she doing?  We were supposed to wait to be seated as the sign clearly stated when I read it again.  I scolded her and she came back.  She also read the sign which in her reading said, “Please seat yourself.”

How did the sign change its wording in the seconds between my reading it twice and my mom reading it?    Since I’ve been able to read since 1st grade, I decided that the sign changing itself was a clear case of multiple sclerosis weirdness.

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After errands I dropped my mom off and headed home.  Thinking about health issues and my MS lack of reading skill issues had me wiped.  But I just had to go to the post office before I rested.  Who knows what was waiting for me in my mailbox- the Publisher’s Clearing House notice of my one million dollar winnings?

An invitation from Bradley Cooper to be his date at the premiere of his new movie?

Free tickets to the dream vacation of my choice?

Fatigue was not going to keep me from missing such important mail!

I collected my exciting mail- the water bill- and then got back into my car which refused to start.  Try as I might, I absolutely could not turn the key in the ignition.

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I struggled.

I forced.

I whined.

I took deep breaths and tried again.

And again.

There were many strong looking males in the parking lot, the type that looked like they might know a lot about cars, but I was too tired, too shy, too independent, too WIMPY to ask for help.  I preferred to sulk instead.

After about 20 minutes of this I called AAA.  I answered all the nice agent’s questions.

“Did you make sure the car is in park?”

Of course I did.

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“Did you jiggle the steering wheel?”

Of course I didn’t.

I jiggled and turned the key and the car started.  It was then that I remembered this same thing had happened to me twice before and jiggling the steering wheel was the mysterious answer.  But I had forgotten this trick.  Automotive weirdness.

Back at home I figured I had earned myself a snack, something crunchy.  I was proud that I had recently purchased something from Trader Joes that was sure to satisfy AND be healthy.  It was a bag called Crunchy Curls– a potato and lentil snack.ID-100132490

I checked the sodium, just to be sure.  And the nutrition label said that while this snack had no sugar, it had 380 mgs of sodium!  That’s more than regular potato chips.

But it’s made from potatoes and lentils?  How can this be?ID-100180475

And that, my friends, is unfortunately called life weirdness.

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What was the book that had me so involved I couldn’t even break to get some water?  It was the newly released Something on Our Minds, Volume 3– an anthology of writings by people living with multiple sclerosis.   The works are as varied as the writers and MS itself. Best of all, all proceeds from the sale of this edition will be given to the Accelerated Cure Project, an excellent non-profit determined to cure the MS beast.

Something on Our Minds, Volume 3 is available on Amazon and is totally worth checking out!

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Another Christmas? Another 12 Days of Christmas, MS Style

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I love Christmas.

I love Christmas songs.

But personally, I don’t love the 12 Days of Christmas carol.  I find it obnoxious.  Recently however, I learned that it was actually an important and secret song.

Folklore has it, that this carol was written in the late 1700’s in England as a code to help children study their catechism as Christianity was forbidden at the time.  A partridge in a pear tree represents Jesus Christ, two calling birds represent the apostles Peter and Paul, three French hens represent the Holy Trinity, etc.

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Weird, as my grandmothers always taught me that the Holy Trinity was Portuguese, but what can you do?

As a devout Catholic who totally gets the reason for the season, I feel bad calling the song obnoxious when it seems like it should be something to be appreciated, even just slightly.

Kind of like how there was a brief time when I actually appreciated multiple sclerosis.  And by brief I mean minutes, no, actually seconds.

This was when I received my diagnosis after I had diagnosed myself via the internet as having either early onset Alzheimer’s disease or acute and untreatable insanity.  MS was actually a relief at that moment.

Now it is just absolutely obnoxious and that is on one of its very rare good days.

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Since I am in the Christmas spirit all year long (but now that it IS Christmas, it is ok to be in the Christmas spirit) I thought I would combine the two.

So here friends, is a multiple sclerosis Christmas carol, obnoxiousness and all.

On the first day of Christmas MS brought to me: one ach-y bod-y

On the second day of Christmas MS brought to me: fingers all tingly

On the third day of Christmas MS brought to me:  three MS hugs

On the fourth day of Christmas MS brought to me: lots of blurry vision

On the fifth day of Christmas MS brought to me: brain completely spacey…..

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On the sixth day of Christmas MS brought to me: every day so sleepy

On the seventh day of Christmas MS brought to me: feeling kind of dizzy

On the eight day of Christmas MS brought to me: bladder very leaky

On the ninth day of Christmas MS brought to me: four shots so nasty

On the tenth day of Christmas MS brought to me: head feeling crappy

On the eleventh day of Christmas MS brought to me: legs acting lazy

On the twelfth day of Christmas MS brought to me: balance not so steady-

legs acting lazy, head feeling crappy, four shots so nasty, bladder very leaky, feeling kind of dizzy, every day so sleepy, brain completely spacey, lots of blurry vision, three MS hugs, fingers all tingly, and one, ach-y bod-y…..

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NOT!

Ahhh friends, a very healthy and Merry Christmas to you all.

And for my non- Christian friends, may you have a healthy and happy season of all things good and not MS related!ID-100277785

PS- the girls in the Christmas hats aren’t me although I do own one and it does look pretty cute on me if I do say so myself.

The singing sisters aren’t me either….

 

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Star Wars is Coming Back!

The return of an MS smoothie master

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When I first started bloggin,g one of Montel William’s peeps sent me a free Healthmaster Elite in the hopes that I would blog about using it.  I did and the result was this blog post from July of 2012.  I’m reposting now because I have vowed to get back to making healthy smoothies a regular part of my routine.   

And because I’m not above using the current Star Wars craze to promote my own writing. ID-10079450

So the Banana Peanut Smoothie was actually pretty good.   It wasn’t as incredibly super delicious as say, a Cookie Dough Nor’easter (the Cape Cod version of a DQ Blizzard), but it wasn’t bad.   Strangely, the recipe said it made four servings when it actually made ten.  Why is that?

I think people who put together recipes and serving sizes have no idea that they are doing.  It’s like when you open a container of something really good and the label says the container contains eight servings when it barely contains three, maybe four.   Somebody is doing something wrong.

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So while I did like the Banana Peanut Smoothie, it was a little too banana-ie/peanut-ie for me and I moved on to the next recipe I was bravely going to check out.  But first, I noticed something really cool.

Before I tell you what that was, allow me to say that I truly appreciate the Healthmaster Elite way more than the Ancient Warrior blender thingy I had tried before.  The Healthmaster comes in cool colors, is easier to use and much easier to clean.  There is no removing of the blades in the Healthmaster so it is likely I will keep all of my fingers while using it.

As I gathered the ingredients for my next smoothie, the Strawberry Banana Peanut Smoothie (I chose this one as I still had some of the ingredients hanging around and those bananas were just crying out to be used again), I really looked at my Healthmaster.r2dr2

I noticed how much it resembled a robot.  Then I grabbed this cool tool that comes with the Healthmaster Elite (and was badly needed and DID NOT come with the Ancient Warrior) called the tamper.   I don’t know why it’s called the tamper as it’s really a smoothie maker’s lightsaber, used to duel the ingredients of healthy stuff into an actual smoothie.Picture 10

Since I was really impressed with this tool, I couldn’t help noticing that the Healthmaster Elite kind of looked like one of R2-D2’s cousins.  I don’t know why everything in that day’s smoothie making experiment was making me think of Star Wars.  Perhaps it was because the last time I didn’t have to worry about my weight was when I saw the original Star Wars in 1977.

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Oh Obi-Wan, I could use your wisdom on my ‘get fit’ plan.  Yes, I am fortunate to have Montel’s recipes but Obi-Wan could send in the force.

The lightsaber fascination lead to actual exercise as I dashed around my living room fighting off imaginary Stormtroopers.  Then it lead to even more exercise as I moved around the room again, this time cleaning Strawberry Banana Peanut Smoothie off the walls.

Perhaps next time I should play pretend Star Wars BEFORE actually using the lightsaber to make the smoothie.

Admit it- you want to do this-you’re making the lightsaber sound right now.

The point is, as silly as it might have been, I had fun and enjoyed my Star Wars smoothie maker more than ever.  As for the Strawberry Banana Peanut Smoothie, it was really good.   I know because the recipe said it made eight servings and I only came up with five and a half, the half being on my walls.

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So my ‘get fit’ friends, take it from me.  If it works for you as you’re trying to get healthy, do it.  If childhood memories cause you to fly around your house like an idiot, at least you’re moving.

If you, like me, have a plan I can only say to you, “may the force be with you!”

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Friends- are you so excited about the upcoming release of the latest Star Wars movie that you want even more Star Wars humor?  If so, I suggest checking out My Odd Sock’s (another funny MS blog-can never have too many of those) latest post.  My Odd Sock and I will have you Star Wars ready in no time!

My Odd Sock

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Talking Turkey on Turkey Day

A multiple sclerosis Thanksgiving post

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

In my world the song goes something like this-

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

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

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

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

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

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

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

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

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

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

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

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

Dental bills are expensive.

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

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

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

What would you bring my friends?

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

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

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

As long as I have my meds!ID-100260170

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

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

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

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

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

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

What kind of music did the pilgrims like?  Plymouth rock

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

What is a pumpkins favorite sport?  Squash

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

What smells best at Thanksgiving dinner?  Your nose

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

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

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

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

pilgrims sign

Happy Thanksgiving my friends!

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Jokes courtesy of jokes4us.com and ibtimes.com

Provincetown photos by Provincetown settler Kristin Perry

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

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.

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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.

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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.

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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.”

“What?”

“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?

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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

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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!

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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.

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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!

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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.

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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!

Yvonne

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