Still a Little Lazy

Too Lazy Even for Me Makes an MS Comeback

sofa dude

The plan was to post a brand spanking new (where does that weird expression come from anyway?) blog today.  It really was.  Especially since the last two blogs have been repeats.  

But then important things got in the way like visits with friends, a big Bruins win, Facebook, Christmas preparations, church, MS fatigue and the Season 1 True Detective DVD rental from the library.  

In the balancing act of multiple sclerosis that we MS’ers do all the time, well a brand new blog got pushed off the list.  I was just too tired.  And maybe a little lazy after all those delicious Christmas sweets.  

Which got me thinking about a blog I wrote in 2012 about just how lazy we, as a human race, can be.  

And so I decided to repost this blog from 2012.

td And I promise, no I SWEAR, that I will post a brand new blog NEXT week.  As long as I have finished drooling over Matthew McConaughey in this riveting new drama…

Too Lazy Even for Me

lazy1

So I know that I mention (complain, whine, lament) here a lot about the extreme fatigue that comes with MS.   But it is a fact and with this fact, comes the fact that many an MS’er has learned to take shortcuts to save energy.

Most of these shortcuts involve skipping unnecessary tasks.   Some MS’ers are pretty good at this.

Me, I’m still learning.

Even though I skip watching TV commercials as much as possible (especially in an election year- so glad THAT’S over), I was drawn to a particular commercial recently.  I think what caught my attention was that the commercial started by asking the question “how many buttons does your car have?”

I had never really thought about it.  My car is a paint chipped 2005 Toyota Corolla that has served me well since I bought it pre-owned in 2004 (don’t ask.)

With the exception of the incident where a tree fell on it during a freak winter storm (another don’t ask but now you have the root of the paint chip problem,) I have been very happy with it.

It has buttons but I have never counted how many.  I just push them and go.

2010-Cadillac-XTS-concept

The commercial was for a 2013 Cadillac XTS and the reason why the commercial was asking about buttons was because this new model of Cadillac has far less buttons than your average vehicle.

The car has sensors that tell the car’s control panel (essentially its dashboard) everything that is happening on the road around you.   It has a Cue which means it can give you infinite listening features as well as unlimited access to all your contacts.

It can connect up to ten different Bluetooth devices and it has Natural Voice Recognition so that you don’t even have to lightly touch the control panel, you can just tell the car what you want it to do.

You can buy this car and go from a few buttons that you have to manually push in your current car to this car where you don’t have to move at all!

Asleep-at-the-wheel

Maybe it’s me, and keeping in mind that I am all about conserving my energy, but I can’t help thinking that if I am too tired to push a button, then I am probably too tired to be behind the wheel.

Arms too achy to maneuver the steering wheel? Perhaps I don’t belong behind the steering wheel at that particular time.

Only a day after seeing that commercial, a friend sent me an email warning about a problem with newly issued credit cards.  All you shoppers out there, take note.  It seems without you even requesting it, credit card companies are issuing new cards that have a teeny tiny wireless symbol on the back of them.

credit card

What this means for you is that you no longer have to stress yourself out with the tedious task of swiping your card thru the credit card machine when you purchase something.   You can just pull your card out of your wallet and the WIFI signal will tell the credit card machine all your card info.

Thank goodness!  After a long day of hitting the stores, that little swipe at the register completely does me in.

Again, maybe it’s me, but I am thinking that if I am too tired to be swiping my card for a whole two seconds when I buy something, maybe I shouldn’t be shopping.

Let’s see- I’d really love the new Cadillac XTS but I am just too exhausted to swipe my card.  Oh, I can just hold my card while I walk by the machine.  Great- let’s do it, the Cadillac is all mine!

I received the email warning because, (surprise surprise,) thieves have learned how to use these new cards to steal from you.  They just hold up a flat screen as you happen by a credit card machine and they are good to go.

lazy2

On the days when my fatigue really sets in, if you don’t know me or my MS you could try to call me lazy.  (Try it all you want but I bet I will suddenly find some energy to belt you.)  But in my super long list of things that are exhausting, pushing a button and swiping a card don’t come up.

If they could make a gadget that automatically gives you a shower, puts on your clothes and make up, and styles your hair, I might be interested.

How about a gadget that cooks dinner AND washes the dishes?    Now you’re talking.

If I could recline on my sofa resting my very achy body and just tell a gadget to do the laundry, I might get excited.  I’m not too particular, I would even understand if I had to push a button to activate the thing.  As long as I didn’t have to push the button more than once or push it too hard, I’m all for it.

Salt n peppa push it remix

Hey Salt-N-Pepa, the eighties are over, we don’t have to push it anymore.

Unless we want too of course.

Have a fabulous New Year dear friends!!!

happy new year

 

12 Days of Christmas, MS Style

A multiple sclerosis Christmas carol

12 days

As you finish up all your last minute holiday preparations, please enjoy last year’s Christmas ditty.  And some fun giggle induced cartoons as well!

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.

'How come I never see you in church?'

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.

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 is seems like it should be something to be appreciated, even just slightly.

drummer boy

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.

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.

santa medicated

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…..

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

maxine christmas

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

houston

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…..

Let’s sing it together, shall we?

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!

frankincense

*******Note*******

I wrote this particular blog over the weekend of 12/13/13-12/15/13- I swear I did.  On 12/18/13 a friend and fellow MS’er posted on Facebook something similar that was attributed to the Must Stop MS Support Group.

I am very, very sure I didn’t copy them but it is possible that in years past I got this idea (the 12 Days of Christmas MS version) from somewhere else and just don’t remember it.

I would like to think instead, however, that great minds think alike!

If that doesn’t work, I will blame using an idea used before on MS.

Yea, that’s it.  If I subconsciously stole this idea it is all MS’s fault!

happy holidays

Two Years Later- Still December Dates

An MS’er looks at the calendar

december calendar

While this blog was written two years ago, since I just returned from the same trip, and dates do not change, I thought I would offer it to you again.  Mostly because I am way too wiped out to come up with anything new this week….

It’s the Monday morning after a month long stay in another state, visiting relatives.   My family and I had returned late on the previous Thursday evening.   The next day it was all I could do through my fatigue to go to the post office and pick up the collected mail.

(I had written about after travel stress and mail previously- check out the blog post from last year’s trip, Its On My List.)

Direct-Mail1

I spent the weekend alternating between resting and going through the mail, resting and sorting the mail, resting and paying late bills, and resting and responding to other mail.

Before I stepped into the shower this Monday morning I looked at my calendar and saw written for today, 12/17/12, “confirm insurance, get approval and schedule MRI.”

While I was gone, changes had been made to my insurance and I knew getting this straightened out was the day’s priority.  Yet in the shower, the date was bugging me.  There was something more to 12/17, but what?

It didn’t help that December dates are pretty busy for me and not just because of the huge holiday that everyone knows about and adjusts their month around.

(You know you do- even if you don’t celebrate Christmas you are making plans as all your favorite places are closed that day!)

It’s also a birthday galore month for me (besides the big guy’s of course.)

girls birthday

This particular December month is filled with the birthdays of one nephew, two cousins, an aunt, a niece-in-law who is also the mother of my two great nephews, a friend turning 40, another friend who turned 40 last year,  a third friend who I thought was turning 40 as my MS brain completely forgot we celebrated her 40th last year with the other friend who turned 40, and a fourth friend who is my same age but who I can never remember if she is younger than me thus hitting my age this month or is older and is hitting the next dreaded year first.

At one point I discovered that a cousin-in-law I have grown particularly close to this past year also had a birthday this month that I almost missed-thank goodness for social media birthday updates.

keith3

While watching the Rolling Stones 50th anniversary Pay per View concert at a friend’s house, I was reminded that Keith Richards birthday was coming up (12/18/43 for those who would like to note it on their own calendars.)

I have always been a Stones fan and think Keith is the coolest of the cool and one of the most talented undead humans on our planet.  But remembering his birthday is a bit extreme for my taxed brain.

Perhaps I remembered because I had listened to the audio CD of his autobiography Life this past summer. Still, retaining the actual date is random.

keith

(Speaking of MS as this is an MS blog, did you know that Keith had a beloved aunt who suffered from MS?  He has a real understanding and sympathy for what living with MS is like.  How much closer to perfection can this rocker get?)

And I don’t care what all these folks say, they must have gotten ripped off from the birthday fairy or Santa Claus when they were kids.

Anyway, what is up with 12/17? There is that whole end of the word thing but that is scheduled for 12/21.

birthday fairy

I finished the shower and made calls and miracle of all Christmas miracles, the calls went smoothly and I scheduled my next MRI.  It wasn’t until evening while I was writing on my calendar a reminder to stop taking Aleve 4 days before the MRI (and already bemoaning what an achy miserable blob I will be those days) that it FINALLY occurred to me what it was about 12/17 that was bugging me.  12/17/09 was the day I was diagnosed with multiple sclerosis.

Here is one of the many weird ways MS works. Every MS’er I know (me included) automatically remembers the day of their diagnosis. I can recall the date of diagnosis quicker than I can recall my social security number.

Yet, looking at the calendar on the exact day, and doing MS related errands involving this sucky anniversary, I couldn’t get my head around why this date was flashing like a black flag in my tired MS brain.

question mark

Oh, but the memory the understanding of the date brought.  Three years ago I was a hurting, exhausted, smoking, depressed, stressed mess working in a job I generally enjoyed but was the root of a lot of the stress.  And I was barely walking.  Yet I was trying to focus on the spirit of the Christmas holiday despite MRI’s and doctor appointments.

Today I am less hurting, not smoking, less stressed, not depressed, better walking, not at that job, less of a mess.

I’m still freaking exhausted ALL the time though and am about as sick of dealing with fatigue as folks are sick of hearing me whine about it!!!

I have discovered skills that I didn’t know about three years ago (writing and public speaking but I guess referring to them as skills is really up to readers and the few audience members I have encountered thus far.)

dory memory

And clearly, I am still as spacey as I was back then as evidenced by my spending the day trying to figure out why this day was standing out even as I repeated the same day to MRI people scheduling my three year MRI!

Here is another thing that has not changed.   In 2009, the most important date was the one coming up the following week.   Even through the pain and the fear about what was wrong with me, 12/25 was the most important item on my calendar.

If it is all the same with you, I will continue to focus on the biggest date of the month.  So for the others (12/3, 12/3, 12/5, 12/15, 12/16, 12/17, 12/18. 12/19, 12/24, 12/27, 12/28, and 12/29,) your dates are ok on my calendar.

But the one that brings me the most joy is 12/25.

Merry Christmas Everyone and whether you celebrate Christmas itself or not, a healthy, blessed holiday season to all……

2014-Happy-Holiday

PS  Helpful holiday gift hint- MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis makes a fun gift for everyone!

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The Yucky State Grinch

A multiple sclerosis book review, sort of….

desert

Once again this New England girl is visiting a state in the southwest and I’m having trouble adjusting.

I do not like this state.

I won’t mention it by name here as I don’t want to offend any of my readers.  Perhaps they actually like this state.  But I do not. To me, it is without a doubt, a yucky state.

You might say that is not fair for me to say.  Many, many people love it here and even retire here, despite its yuckiness.

But before you judge me for unfairly judging a state, please allow me to state my case.

sw map

There are no seasons here.  The weather goes from nice to hot to super hot to hotter still.  Where is the snow?  Where are the changing colors of the autumn leaves?  Where are the cool breezes?

This state is surrounded by mountains, dessert and land.  Where is the ocean?  Where are the lighthouses?  Where is the whiff of low tide that only a true New Englander can appreciate?

Speaking of smells, the one thing I thought was cool when I first visited was that there are cotton fields all over and that, to me, was interesting.  Until allergies I never knew existed rolled to the front of my runny nose, itchy eyes, and sneezy sneezes.

cotton-fields-16734132

And then the smells followed.  Seems the best way to fertilize these fields is with manure and so everywhere I go and with everyone I see, I smell a messy diaper.  Which is super stressful as the whole reason I am in this state is to visit my two youngest nephews, one who is in diapers and one who is recently potty trained.

These poor children can’t get away from me fast enough as I’m always checking for accidents or a messy diaper.

(And truth be told, I’m visiting their parents too…)

Perhaps, if I’m being honest, the fact that I think this is a yucky state just might have a teeny tiny bit to do with the fact that I hate that these boys live so far away.  One may argue that it is not the state’s fault that these little cuties live here but I irrationally beg to differ.

Plus, to add to my frustration, these little ones are actually great nephews; which makes them great.  But it also reminds me that I am freaking old!

boys and blankies

When did their dad (my very first nephew) get old enough to have two little boys of his own?  I’m going to blame that on the yucky state as well.

Like I l have learned to do with multiple sclerosis, I tried to power on through the bad and tried to make the best out of visiting a yucky state.

(Of course I don’t make the best out of bad things until I have whined first about them over and over and over again.)

So, visiting in late November when the weather was anything but November like, I knew the best thing I could do was treasure my time with these awesome boys.  Since I wouldn’t be here during Christmas, I decided I would repeat the tradition I had started with their dad by reading them the best book in the world, How the Grinch Stole Christmas.

mean grinch

Dr. Seuss is the man!  I knew I could share his Christmas magic with my great greats. But the neighborhood library, which was huge, didn’t have it!!!!  How’s that possible?

They actually did have one copy but it was out. Shouldn’t there be like ten copies of such a classic?  My frustration was just another mark on the list of things that made this particular state a yucky state.

I fumed.

I seethed.

I reasoned I still needed a book for the children and so I grabbed some other Dr. Seuss tittles.  One was a Dr. Seuss book I had somehow missed in my literary exposure.  It was called I Am NOT Going to Get up Today.

Get_up

It was the perfect book, especially for someone grouchy and who has MS.  It’s like the anthem of MS’ers everywhere; a book about someone who has just had enough and refuses to get up for one day.  And it’s okay!!!

It’s like Dr. Seuss himself wanted to let people like me know that once in a while, it is ok to give in and give up and just rest for a day.  And since Dr. Seuss is a member of the esteemed medical profession, he knows what he’s talking about!

The book includes classic lines like,

In bed is where I’m going to stay.

And I don’t care what the neighbors say!

I never liked them anyway.

And,

I don’t choose to be up walking.

I don’t choose to be up talking,

The only thing I’m choosing

is to lie here woozy-snoozing.

So won’t you kindly go away.

I am NOT going to get up today!

Dr. Seuss

Dr.-Seuss-Logo

 These brilliant words by a brilliant man made me so happy and relieved.  It occurred to me that if not for this yucky state, I may not have discovered this MS masterpiece.

That thought led me to think of The Grinch himself.  His grouchiness wasn’t totally justified.  Though no one quite knew the reason, he hated the whole Christmas season.  And that was not fair to Christmas.

happy grinch

But when he learned that maybe his Grinchiness was missing the good of the holiday, he set out to make amends and find out what Christmas was all about.

Perhaps I need to do that with this yucky state.

Perhaps I should apologize to those who live here and truly appreciate it.

Perhaps I should finally take responsibility for teaching my cousin’s four year old son that this state is a yucky state.  We were doing a puzzle of the US and I shared my opinion with him.  How was I to know he would then announce to all he encountered that this was a yucky state?

us map

At the time, I was pretty impressed.   His parents, not so much.

Perhaps, like the Grinch, I have to learn to appreciate the good that comes with the bad and not blame a state if it happens to be where my great greats live and is too far away.

Once again, Dr. Seuss has both re-assured me and taught me.  So I will no longer feel guilty for the days when I am just NOT going to get up and I will try to be less Grinch-like when discussing this particular state.

stormy ocean

It sure would be a lot easier if they put a nice blue ocean in the middle of it though….

 

PS  Something tells me that this little rhyme is not really from Dr Seuss but I thought I would share it with you anyway…

seuss poem

Feeling a Little Icky, All Over Again

An MS inspired parody

mich bloated sac

Funny how things come around.

I wrote this blog two years ago and while the children I mention here are now older (both are official toddlers,) the words in this blog post still apply.  So while I rest up after one of our yearly visits with these little ones, a Thanksgiving Day visit to be exact, here is a repeat of a former spot on blog post. I hope everyone had an awesome turkey day!

What is with me and show tunes lately?   I don’t even really like show tunes yet I can’t seem to get them out of my head.

Just recently I posted a blog based on the song A Few of My Favorite Things and now the song I Feel Pretty from West Side Story is lingering around.  This is especially weird as

  1. I don’t even like that song and
  2. I really, really don’t feel pretty at all.

On this family trip my get fit plan has gone right out the window.  And, as during the packing for this journey my suitcase was too filled with toys for the little ones to add any of my nicer clothes, I am schlepping around in my least pretty wardrobe possible.

Luckily, kids don’t really notice what you are wearing. And while family may notice what you wear, they aren’t really supposed to care.

boys and blankies

So it doesn’t matter that I don’t feel so pretty.

So why is that stupidly annoying song hanging around my musical brain?  You would think the songs that would be lingering might be Rockin Robin or Riding on a Train, both songs that blast frequently from two of the kid’s toys.  But no, I Feel Pretty it is, over and over again…..

To help combat this frustrating ordeal, I thought if I actually sang the song, maybe it would go away.  But since I don’t feel so pretty, I may have to change the words to be in keeping with how I really feel.  So, on a day after one of my blasted shots, where the kids have a prior engagement and I am in a rented home with my mom who isn’t feeling well and my sister who insists on watching bad TV, here is my MS/vacation version of I Feel Pretty.

duhhh0001

I feel achy, oh so achy

I feel achy and shaky and uptight

And I pity the person who bugs me tonight

 

I feel icky, oh so icky

It is sickly how icky I feel

And so icky that I can hardly believe it’s real

 

(Since the state we are visiting is on the west coast and it is hotter than it should be in December)

hot flash

I feel sticky, oh so sticky

I feel sticky and sickly and tickly

It is a wonder if I will sleep tonight

 

(And since the state we are visiting is covered with cottons fields that we all seem to be allergic to)

 

I feel itchy, oh so itchy

It is witchy how itchy I am

A very itchy and bitchy ma’am

bitchy

See the grouchy girl in that mirror there,

Who can that crab apple be?

Such an achy body,

Such tired eyes,

Such a lazy gait

In another state I must be.

 

I feel sleepy, oh so sleepy

So sleepy and weepy, it’s not right

And it isn’t even close to night!

moving

(I actually did some research for my little song parody and it turns out, I don’t even have to change any words of Part 3 of the chorus for it to fit into my own little MS away from home song.)

 

It must be the heat,

Or some rare disease,

Or too much too eat,

Or maybe its fleas!

crazy woman

I feel icky, oh so icky

It is sickly how icky I feel

And so icky I can hardly believe it’s real!

 

Don’t worry friends, I just wrote this little ditty to do anything to get rid of this song.  If my version didn’t work, the effects of the shot are starting to let up, the MS MonSter (see my prior blog post MS/PMS MonSter Mash) is starting to head back into its cave, and the children have time on their dance card to hang tomorrow which will be a straight shot of adrenaline and joy.

I don’t know that after chasing and playing and hanging with them that I will be feeling pretty tomorrow either.  But I will definitely feel less icky.

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Dear friends,

Want to stay home and avoid Black Friday shopping?  

Want to give a gift that brings laughter to others this holiday season? 

Why not give MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis to family and friends? 

MS Madness! is a gift that will make them smile over and over!!!

stressed holiday2

 

A Few of My Favorite Things

A multiple sclerosis Thanksgiving post

sound of music

I actually wrote this past on a previous Thanksgiving.  Yet, I’m still super thankful for all the same things!  So I thought I would share it with you once again.  Have a wonderful holiday friends….

For some insane reason, I can’t get the above song out of my head even though I have usually found it slightly annoying.   It’s kind of a Christmas song, although not written as such.

As someone who loves autumn so much so that she enjoys taking her cool weather holidays one at a time, I’m not sure why this song is hanging around my lesion filled brain.

Perhaps it’s because next week is Thanksgiving and the above reminds everyone what what’s her name from that movie is grateful for.   Thus, why isn’t My Favorite Things thought of as a Thanksgiving song?

I have so many things for which to be grateful, that I couldn’t possible name them all or fit them into a song.  And trust me, mittens and kittens are not at the top of the list.   Just thinking about Thanksgiving makes me grateful.

snoopy thanksgiving

For example, if my small family winds up at my place on the holiday then I am super grateful that the local grocery store sells what I like to call ‘turkey in a box; a complete holiday dinner you can just throw into the oven all prepared and no one is the wiser.

I am grateful for pumpkin pie- how could I have possibly left out pumpkin pie in my last post  Pumpkins, Pumpkins Everywhere?

I’m thankful that Thanksgiving is a day where it’s perfectly appropriate to eat too much and veg out.  It is actually un-American not to do so.

And I am thankful that even the fruits and veggies cooperate on this day and aren’t too obnoxious- think mashed potatoes, stuffing with celery, cranberry sauce, candied yams, pumpkin pie.  I know, again with the pumpkin overkill.

pumpkin pie

I am grateful for the knowledge that Black Friday is just a scam of hype and deals that aren’t really deals, thus allowing smug people like me the luxury to stay home, eat too many leftovers and veg out for one more day.

But this is a multiple sclerosis blog and so if I am going to list things that I am grateful for, or a few of my favorite things, I should focus on MS.

What could one possibly find to be grateful for about MS? I thought about my last few years living with this illness and did miraculously come up with things to be grateful for.

For example, while I am not thankful to have to give myself shots, I AM very thankful that they seem to be working.   And I am thankful for the extra fat cushion I have to soften the shot just a bit.

I still HATE doing them though.

'Only one side effect - colossal pain...'

I’m thankful to have a knowledgeable, kind, patient, young, handsome neurologist on my side as I battle MS.  I am NOT thankful that he happens to be married but I guess you can’t have everything.

I’m grateful that my primary doctor diagnosed my diagnosis quickly without having to do a spinal tap as I have heard they are just horrific.   She just had me electrocuted and shot through a tube a couple of times and we were good to go.

mri barbie

These bits of MS gratitude did not seem grateful enough.   I started looking over my blog posts for more help and realized that I started this blog over a year ago and it has since grown from a whenever I felt like it post, to a once a month post, to twice a month post and then to a once a week post.  (Thank you to multiple sclerosis for continuing to give me enough material to keep this wacky blog going- oh wait- maybe not….)

In my past blogs there were other examples of MS things I had to be thankful for.  In the post Stormy, Sleepy Sandy, I talk about my bladder alarm clock screaming at me to get up.  I am thankful that the alarm clock part of my bladder is still working.  It’s been quite a long while since I have had ‘an accident’ and I would like to keep it that way for as long as possible.

kalecartoon

I am thankful that kale is considered an awesome veggie for MS’er’s as well as the world as a whole, and I can sneak its precious nutrients into my all time favorite comfort food, kale soup- see post Kale, the New Frontier.

I am thankful that due to cognitive difficulties that come from MS, when I do something stupid I have a disease I can totally blame it on- Stupid MS.

While fatigue and clumsiness are constant companions, and I am may not move so gracefully going about my day- No Moves Like Jagger but Smooth Like Montel and Chop Their Happy Little Heads Off posts- I am grateful that I’m still moving.   Being able to move about without any help is definitely something to be grateful for, even if you do move like a slug most days.

And while an eye exam discovered a new disgusting condition, Oily Tears and All, I am grateful it didn’t show any significant damage as yet to my optic nerve.  I will be able to continue reading the numbers on my bedroom scale and the milligrams on my medications going up, up up a while longer…

montel

And speaking of weight and Montel Williams, I am grateful to all my friends, family  and readers who have helped me on this journey, whether they sent me cool tools and recipes to try to get fit- The Star Wars Way and 50 Shades of Green/Doing It Veggie Style posts, or whether they sent words of encouragement, or are just reading the blog after I have it to them a million times, even if it is just to shut me up about it, I am grateful.

And on this sappy holiday of Thanksgiving, I must say I am thankful to God who is the real being responsible for the above.  My health, my sense of humor or lack thereof depending on your opinion dear reader, my friends, my family and everything good comes from HIM.

Fortunately for me, HE also enjoys a good joke or two.   HE absolutely appreciates a rip roaring laugh.   I think that may be why he created us in the first place!

A Happy and Healthy Thanksgiving to all!

eat chicken

Loopy Fruit

Multiple Sclerosis and breakfast collide

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I grew up as a child of the late seventies/early eighties.  What that means is that my Saturday mornings were spent in front of the TV, with a bowl of the best sugary cereal possible, watching classic cartoons.

And by classic, I mean good cartoons; Scooby Doo, Schoolhouse Rock, Fat Albert, the Jetson’s and Bugs Bunny.

My favorite was The Flintstones but they were on in syndication.  Yabba Dabba Doo five days a week!

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I would spend these joyful mornings getting amped on processed sugar until my mom would start vacuuming, thus making the TV inaudible. The threat of having to help clean forced me outside.

Because of this, I understand what “Silly Rabbit, Trix are for kids” means.

Trust me; I’ve actually been “CooCoo for Cocoa Puffs.”

I understand the difference between “they’re great” and “they’re GGGREAT!

I know that it’s not possible to say the words, “magically delicious!”  They must be sung.

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My favorite breakfast was Froot Loops promoted by the amazing Toucan Sam. Ahh, what could be better?

I’m an adult now and I’ve learned a thing or two.

  1. Good cartoons are now actually movies and they aren’t even accurate. I met Aladdin at Disney once and he was a total tool!!  Disney lied when they made him humble, sweet and brave in the movie.
  2. 2.Adults aren’t supposed to like good cereal. We’re supposed to appreciate the “good for you” stuff instead.

Multiple sclerosis has made my adulthood confusing and frugal.  For example, I’m not sure if milk is considered good for you anymore.  And if it is, which kind- whole, low fat, almond, goat, soy- I can’t keep track.

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And since life with MS is expensive and I’m on a tight budget, I can’t afford the good ‘good for you cereal.”  My favorite healthy cereal costs twice as much as the others and doesn’t even have fruit in it!

How healthy is that??

I’ve tried the cheaper healthy cereals but they taste like cardboard.  So let’s be honest, I can buy them and tell myself that I will eat them but the reality is that I will come up with some excuse why I shouldn’t-like that I’m bummed out that there are no good cartoons on so I need to comfort myself with sugar, etc.  At which point the healthy cereal will sit in a cabinet getting stale and will turn into stale processed cardboard and need to be thrown away.

How frugal is that?

Luckily, Cheerios seemed like a good compromise.  They’re affordable and made with whole grains and thus somewhat healthy. I’m still confused about the milk issue but hey, you need to take things one step at a time.

As I explored my breakfast options, I discovered that Cheerios come in different flavors now.  And, what do you know, they have a fruit version!   The box even looked like the beloved Froot Loops box of my childhood.

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I understood that since it was Cheerios, they couldn’t be as good as the real Froot Loops but maybe they were close and at least they had fruit in them-yea!

I brought some home and they were delicious!  They tasted just like the favorite cereal I remembered.  Oh joy to adulthood.

But then I began to think about this.  How could this be?  How could Cheerios steal Froot Loops and not get sued?

How could Cheerios make a healthy version of my cereal and yet still taste great?

As I munched away, the question refused to leave my addled brain. As an adult, we have the internet now and so I thought to solve the issue by comparing the ingredients.  And I was shocked!

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Brace yourself friends-it turns out the Fruity Cheerios are not that much different in ingredients and nutrients than Froot Loops!  And the real devastating shocker NEITHER is made with fruit!!!

Fruity Cheerios has a slightly better nutrition report than its predecessor and includes something called pear puree which makes no sense as I don’t think there are even pear loops in the box!

How was I supposed to process this? How could Cheerios and those heart healthy commercials deceive me this way?

I felt betrayed.

I felt that everything I knew about life was a total lie.

I felt totally amped on sugar.

It occurred to me that I should go run around my neighborhood and tease the boys next door.

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Plus, the real frustrating part was that I had two coupons for $1 off three boxes of Fruity (I feel corrupt just typing in the word fruity after my discovery,) Cheerios and thus I had six boxes I needed to consume before I went on to the plain, not so bad for you, regular Cheerios.

The whole thing seemed awfully loopy to me….

I suppose the next disappointing thing someone will tell me to ruin my childhood was that the Flintstones weren’t real either.

See how paranoid this cereal nutrition issue is making me?  Of course the Flintstones were real- they were even historical!

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Yes friends, this getting healthy thing is hard.  This getting older thing is hard. This getting poorer thing is hard.

What’s a confused, money conscious girl to do?

I couldn’t waste the boxes and so I did the only thing I could think of.

I pulled up old episodes of Superfriends on YouTube and ate my breakfast.

I felt comforted by the fact that at least I can get some nutrients from my new gummy vitamins.

And before you argue about vitamins that taste like candy being nutritious, I can prove that they are.  They say ADULT right on the label!

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PS  If you can’t find any good cartoons on TV but want some giggles to go with your breakfast, pick up a copy of MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis!

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Lawbreaker

Multiple Sclerosis goes criminal

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When I typed the title of this blog post I was saying to myself, laaaaaawwwww breaker, using a Matthew McConaughey legal thriller voice.   What does Matthew’s southern accent have to do with this blog?

Nothing, it’s just how my brain works.

So here’s a question, if multiple sclerosis is criminal, and I’m pretty sure it is, why do its victims have to serve the time?  We didn’t do the crime.

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I’m sure if we thought about it my MS friends and I could find some MS criminals worthy of doing the time; like say, the person who asks how you are and then proceeds to diminish your answer by telling you that they have your symptoms too.

Or maybe people who repeat the same thing over and over even as you tell them that thing doesn’t solve your issue.  (See a future blog post on that one- I have a couple of stories involving those types that I will be sharing in the future.)

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And then there are the useless, unfriendly folks at the insurance companies- they should definitely do some time.

This summer I was at a public event and was talking to a nice retired couple.  When the subject of my MS came up the wife sympathized and then told me that her son-in-law had recently been diagnosed as well.

I expressed concern for him and how he was doing. It was then that she asked me if MS had ever turned me into a criminal!!

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Seems in addition to his diagnosis, this relative had started absconding funds from his company, committed tax evasion and had become abusive to his family.

How best to answer this question?

I told her that MS can affect a person’s judgment and it’s a very expensive illness that might possibly leave someone desperate.

I told her that with MS comes vicious mood swings and I hoped that their family was getting the help they needed.

I also told her that everyone is affected differently and there is so much about multiple sclerosis that we don’t know that it is hard to speak for someone else.

“But has MS ever made you commit a crime?”  She persisted.

“Well no,” I admitted.  Like I would have said yes if it had- I’m not that brain fogged!

“I knew it!” She exclaimed.

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Turns out that she wasn’t very fond of her son-in-law and the criminal behavior wasn’t new. What was new was that he was now trying to blame it on MS.  That’s playing the MS card in a whole new way!

But then, a few months later, MS DID cause me to commit a crime; drug dealing to be exact.

Here’s how it went down.  An online friend with MS had somehow accumulated several months of Copaxone, a very expensive MS drug.  It was the wrong dose for her and because drug companies get easily confused and red tape moves very slowly, they kept sending it to her even though she couldn’t take it.

As time went by she wound up with several unusable doses of this stuff worth approximately $35,000.  When the drug company FINALLY got her prescription right, she asked what she should do with the medication she couldn’t use.  The company told her they couldn’t take it back and she should just throw it away.

That seemed very wrong to her and so she called her neurologist for advice.  He told her the same thing; by law all she can do is dispose of it.

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Imagine throwing away $35,000 of cold hard cash in the dumpster?  If I knew that someone had done this, germ-a-phobe or not, I’m going dumpster diving for sure!

My friend had insurance but knew that many people don’t and that even for those who do, copays for drugs like Copaxone are outrageous. She asked if in my travels online I could inquire if anyone could give these meds a proper home in their fatty tissue.

I certainly would have taken them off her hands if only it was my MS drug.  But it was not.

Being the helpful person I try to be and agreeing with my friend that throwing this stuff away was just asinine; I posted on two Facebook groups about the availability of these meds.

We weren’t even trying to sell them.  We were trying to save the planet and a fellow MS’er by not wasting what should definitely not be wasted.

But as soon as I posted this super relevant, super helpful announcement, the administrator of one of the FB groups told me that she had been flooded with comments pointing out that sharing medication was illegal and I was posting illegal activity on Facebook- a definite social media no-no unless you hide it in weird code that only you and fellow criminals understand.

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I greatly thanked the administrator; I’m way too much of girly girl to handle prison well.

I took the posts down and hid in my closet while I waited for the feds to show up. Thankfully, they never did.

My near collision with the law just happened to take place the week before Election Day.  I went to vote.

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At the polling station I pondered the ballot questions.

And I felt disgraced.

Not at the fact that I almost broke a law/broke a law but that the law was just incredibly ridiculous in the first place.

Yes I can fathom the reasoning behind it; you don’t know if the medication was tampered with, someone could decide to change their dose based on what was available, people could stop taking their meds in order to sell them, people might be inclined to unload expired meds which could be dangerous, etc.

But still, $35,000 worth of needed meds going to the trash is just wrong.

I wondered if there was a way to make a new law, one that would set up a safe resource center for medication.  Perhaps there could be a database where people could register their prescriptions and the center could examine them to make sure they were still good before sending them on.

I thought about making a new law and writing it in on my ballot.

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Then I remembered that’s not how it works.  I watched Schoolhouse Rock as a kid, I know how a bill becomes a law.

It all seemed possible.

And then the fatigue set in and it all seemed overwhelming.

So while I did vote, that was all I was capable of that day.

But I can still think and who knows, maybe one day, I can come up with a plan and then a law to prevent such wastefulness.

Until then, I guess I’m just glad I wasn’t arrested…

But if I was, maybe I could use MS as a defense???

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Scary Brain, Scary Movie

A multiple sclerosis movie mash

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So for Halloween fun, I thought I would repost one of the first blogs I ever wrote; a blog that my readers call a classic. 

Happy Halloween friends!

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It’s the afternoon and I’m 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.

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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.

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

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’m forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.

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Figures. 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 is not The Fog but Night of the Living Dead.

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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.

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?

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It likely depends on what my MS is doing on any given day. Often, it makes me think I’m 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 too all the hysterical mood swings and weird symptoms I experienced before I knew I had MS. 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.

I remember 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.

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“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’s 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.

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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 felt 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. That is definitely the horror movie that best describes my MS.

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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.

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Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your multiple sclerosis was a horror movie which horror movie would it be???????

Friends, if you have read my book (MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis)  or regularly follow my blog, you know of my great dread of vegetables.  So you’ll understand why the picture below is one of the most frightening image I have ever seen…

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Gina Blue is Disabled Too

A chronic illness companion

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My car and I go back a long way, 10 years to be exact.  She was a pretty, blue, 2005, used Toyota Corolla that I bought in 2004.

No, that is not a typo or a result of MS brain fog.  Weird as it seems, the 2005 cars came out early that year and someone bought her right away.  Then they decided that they didn’t like her and returned her to the car place!

Like me, too many times to count, my little Corolla faced rejection early in life.

But I loved her and scooped her up!    She was clean, smart, not too fancy and not too terrible looking; more cute than beautiful.  I didn’t want a flashy vehicle.  I didn’t need something gorgeous that would be too much trouble to keep up with.

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Sure, I could have invested in a Lamborghini or a Ferrari- not really, I could barely afford the Corolla- but I fell in love with blue simplicity.

Previously I owned a blue Dodge Neon that my friends said I should name. So I named the car after my fake id- calling it Gina Blue.  But it never really stuck.

I tried the name out on my Corolla too but it also didn’t fit. It makes for a fun blog post name though.

It seemed easier to just call her my car or my baby.

She was absolutely perfect!

For one month.

Then, just before Christmas that year I made the mistake of parking her under a big tree during a freak winter windstorm.  While I hummed carols and mailed off Christmas cards my auto baby became disabled when the tree collapsed on her.

Disabled- having a physical or mental condition that limits movements, senses or activities.  Google

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Her roof caved in and her frame was badly bent.  It was a frightening scene.   She needed major reconstructive and cosmetic surgery.

I took her to an auto body place so they would make her perfect again but she was never the same.  She had received a traumatic injury that would haunt the rest of her days.

I was shocked that she couldn’t be healed completely, especially since the auto body guy I took her too was incredibly handsome- how could he not fix her completely?

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Before you freak out, I didn’t pick his shop because he was gorgeous; it was just a nice plus when I dropped my baby off and came to visit it from time to time while he was working on her.

Several years later I had to take her back to the shop as her paint was peeling.  And a couple of years after that it started to peel again.

This time I decided to leave her be. I didn’t want her to think that I loved her any less now that she was covered in chipped paint.

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Here is the point of my sad tale- You know how they say people start to look like their dogs or their dogs start to look like their people?  Well, I’m convinced that my car is starting to look and act like me.

She received her big traumatic incident right before Christmas.  I received my big traumatic incident (my MS diagnosis) right before Christmas five years later.

The summer after my diagnosis, the heat and humidity made me very sick.  And my car got sick too!!!!

When I took her to a cute mechanic he said the heat just got to her.  He was wrong.  One month later the part that he replaced was the subject of a recall and Toyota sent me a big check.

This should be a lesson- no more good looking car guys touching my baby.

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Five years have since passed and I’m still kicking.  I’m slower, have unpleasant symptoms, and am definitely showing my age.

But my car is too!!!! Her paint chipped spots have grown and some have turned to rust.  And now she has sprung a leak! Two leaks actually.

(Yes this reminds me of MS bladder problems. No, I have not yet developed leaks, thankfully.)

Chronic illness-  a condition that is persistent or otherwise long lasting in its effects.   Wikipedia

I took her to a new auto body place and a new auto doctor and was told that he can try to do a simple fix but if that doesn’t help her, she’ll need major, expensive work.

(Hmmm, kind of reminds me of what my neurologist told me about my fatigue and mood swings at my last visit.)

And like a busy specialist, this car doctor can’t treat her for two weeks.  And we have a rain soaked Nor’easter heading our way…

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My poor baby.  I have no way to protect her. The most I could do was try to help her through this exacerbation until she can get the help she needs.

I covered her seats with plastic garbage bags and then opened two umbrellas under her weak spots to catch the dripping water.  I know opening an umbrella in the house is bad luck- hopefully opening an umbrella in a car is good luck?

She looks very uncomfortable.

I worry how she will weather this latest storm.

I worry how she’ll feel after her next auto doctor visit.

I worry how I will pay for it.

I worry about the fact that this latest car doctor is older but still handsome- will she be in better hands with an older car doctor?

I do cringe when society focuses on looks and so I know better than to have that as a factor in deciding where she should be sent.  But this is my very own baby we are talking about and the previous cute doctors have been a bad omen.

There was nothing I could really do but wait and worry and hope she does ok.

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While I was waiting and worrying there was a knock on my door.  My friend Serena and one of her daughters had arrived with a surprise gift to cheer me up- a funny t-shirt.

Yes, a shirt has nothing to do with a troubled car.  But it reminds me that when you are down and out, your good friends can help pull you through.

And my car has a good friend, a total bestie, me!

Together we will get through this latest symptom she is facing.

Together we can weather any storms: rain, fatigue, new symptoms, injections, MRI’s whatever they may be.

I just hope that a bumper sticker, rather than a t-shirt, will cheer her up….

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Guess What!  Guess What!  Guess What!!!  The Multiple Sclerosis Association of America has given MS Madness! a shout out in their latest edition of The Motivator!  Check it out here!  And please check out the rest of this awesome publication while you’re at it…..  The MSAA rocks!!

The Motivator

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