A Few of My Favorite Things

A multiple sclerosis Thanksgiving post

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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.

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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.

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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…

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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!

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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!

fruit loops

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.)

Paper pusher

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.

Wasting money

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.

no criminal

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.

vote sticker

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.

bill

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…

scary veggies..

 

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.

Engineer logo.

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….

survive bumper sticker

 

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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Decisions, Decisions

Another up close, in depth, comprehensive look at “cog fog”

I tried to catch some Fog.  I mist.  Anonymous

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One of the gazillion frustrations of life with MS is trying to explain “cog fog,” also known as brain fog.

I once had a neurologist tell me that if I can’t explain it, then it must not exist.   Even in the brain fog moment that I happened to be in at the time, this comment didn’t seem to make sense.

Isn’t that the very point of brain fog?  It makes things hard to think.

It makes things hard to describe.

It also makes things hard to decide.

Brain Freeze

So even though today my brain is the foggiest it’s been in a while, I decided I would take a moment to try to describe “cog fog.”

See what I mean about decisions?

One cognitive difficulty for me is simple math. Math was never my deal, MS or not.

All I remember about my high school math classes is that one teacher was always covered in chalk dust and the other took points off if you turned in a page ripped from your notebook that still had the little squiggly pieces attached from where you ripped it.

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I talk about my ongoing math issues more in a former blog post MS Counts.

And I recently talked about how when MS takes over your brain sometimes even the most basic of decisions seem impossible to work out, To Shower or Not To Shower-That is the MS Question

MS can make me easily overwhelmed and every factor imaginable takes over when trying to decide something. Another frustration of “cog fog” is that it can often frustrate others, especially when I need to combine it with numbers and decisions.

Here are some things that my MS brain makes difficult in my life and that are hard to explain to those who find it weird.

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Making coffee-   This should not be a big deal as I don’t even drink coffee.  Put some hot water and a tea bag in a mug and I am good to go for the day.

The problem comes when I have to make coffee for someone else.  Many people have tried to show me how to do this and I can never remember the coffee scoops per water ratio.

Sure, I could write it down.  But where?  How will I remember where I have written this information down?

One might suggest that I just read the directions on the back of the coffee container.  But those directions offer variables- for stronger coffee do this, for a larger pot, do that.

How do I know what is a large pot and if my guests want their coffee stronger or weaker?  Why can’t they just drink tea like the rest of the world?

Clip Art Graphic of a Desktop Computer Cartoon Character

Multiple email addresses-   Whenever someone changes their email, or gives me a second or even third email address, I’m lost.  Not to mention the fact that my email server keeps changing the rules.

So what do I do? If I have to send an email I will send it to all the addresses I have for the person.  This causes them to get several emails and get annoyed with me.  I’ll ask which address to use and they will send a response like, “this one, this one’s the best.”

Well which one is that?  My computer just puts your name in the address bar so I still have no idea which is your preferences.

Or, to get back into the decision thing the person might say “I just use this one for work,” or “I just use this one for fun stuff.”  Now I have to decide if what I am emailing is fun or not and then go back to trying to figure out which email address is which.

cartoon-burglar

Keys- My dad recently picked up my key chain and wanted to know why I had so many keys and what were they all for. I had no idea.

I started to try to figure it out and just got overwhelmed. One clearheaded day I actually started locking and unlocking stuff to try to further investigate.  And then I got confused again.

I went to the hardware store and bought those little color tabs you can put on keys to signify where they go but of course, I can never remember which color is for which lock.  I can write that down but where- on my keys?  That certainly would make it easier for the burglars.

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Gratuity- The best example of how brain “cog fog” can mess with an MS’er is tipping.

Generally I’m a nice person who wants to be generous.  I waitressed one miserable summer and even though I was super klutzy and lousy at it, (I choose to blame that on MS even though it was 20 years before my diagnosis,) I appreciated a good tip.  And I’m not cheap.

But if I go to a restaurant with someone the words I dread are “I’ll get this, why don’t you just pick up the tip?”

Why is this tough?  First you have to remember the going tip rate- 18%, 20%, 25%.  Then you have to do math.

Then you may want to account for the variables associated with a range from lousy service to wonderful service.

(I may be nice and I would never stiff a server but if you are rude you are getting the minimum tip: unless of course I screw up which is likely.)

Flo

Then, because it’s not cool to leave change, you round the tip off-more math.  And more decisions- should I round up or down?

To help combat this particular frustration I got myself one of those tip cards.  So if I’m in the tip paying position I will pull out my little card.  And it helps, if I can read it in the dim light of the particular establishment I happen to be at.

But often, my companions object to the card.

“You don’t need that to figure out the tip- just round off the bill, take 20% and then lower it slightly.  Oh wait, he was really nice, raise it a bit.  Do you have enough singles?  It’s not cool to leave change, even quarters. Oh wow, that’s a really generous tip, did you mean to leave 40%?”

It’s enough to make someone never want to go out to eat.

hairdresser

But the confusion doesn’t end there.  It pops up again with hairdressers, taxi drivers, delivery people, the kid who pumps your gas, and on and on….. I swear I gave my hairdresser a 60% tip last week.  No wonder she loves me; it has nothing to do with my wavy hair and sparkling personality.

In the grand scheme of life, none of these cognitive difficulties are that big.  And when you put them in the context of the grand scheme of multiple sclerosis, they’re even smaller.

But still, when you need a way to describe what can’t be described, here you have it.

At least, I think this is descriptive…

happybrain

Portuguese Soup with an MS Twist

A multiple sclerosis culinary event

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It was a privilege growing up Portuguese, especially when it came to Portuguese food.  Portuguese delicacies are awesome.

What?  You don’t believe me?

Trust me.  I have way too many extra pounds on my 5’3 frame to prove it.

We Portuguese folks have our own veggie soup and even I, the self proclaimed arch enemy of vegetables, love it.

Of course, my ancestors taught us right; we load our veggie soup up with sausage so it doesn’t taste like a veggie soup.

But it totally is!  It has carrots, potatoes, onions and kale, the super food of my people.

For more information on this please see my prior post titled, Kale, the New Frontier.  

kalecartoon

Some people put tomatoes in their soup to make it even healthier and the soup also has lots of beans which offer protein and fiber.  I’m telling you, this soup is good stuff!

And depending on how involved you want to be, there are many different ways to make it.  Some people go all out, growing their own veggies, raising, slaughtering and smoking the sausage themselves and soaking the beans for days.

Before MS, I actually learned to make this soup and I must say, it came out pretty good.  (I personally didn’t slaughter anything though..)

But no matter what the experts say, cooking with multiple sclerosis is hard and shortcuts are often needed.

So I was thrilled to discover a recipe that made the soup process much easier.  Instead of using salt pork for flavor, (I have bought salt pork before but don’t know what it is and am not sure I want to know,) it uses bean and bacon soup.  Soup for your soup?  How incredibly convenient!

avosoup

Many Portuguese people I know would disown me for using this version but we just won’t tell them.

The problem was, I needed even more shortcuts.  Chopping and peeling are particularly hard for me and so I dared to wander down the canned veggies aisle of the supermarket and was thrilled to discover that potatoes and carrots come in cans!  I scooped them up.

That meant I would only need to wash the kale-take it from a Portuguese person, you really have to wash the kale well.  It’s so good that bugs just can’t resist it.  Now if you are cooking broccoli for some strange reason you probably don’t need to wash that at all.  It’s so gross even dumb bugs stay away from it- chop the linguica (mine is a linguica family, I think the chorizo people are from the islands,) and chop the onions.

Well, one onion.

good meal

Chopping onions was really hard for me and so I only use one in my version.  I knew I was saving myself a ton of work.

Mid-afternoon I started washing the kale.  Washing kale should not be that tiring but when you have MS, everything is tiring.   Since I needed to stand at the sink, my legs started to ache during the washing process. I set the kale aside to dry and then rested for a bit.

Next, I opened my cans of veggies.  But with weak, achy fingers, that was an exhausting task too.  And so I rested some more.

Next I started to slice the linguica which wasn’t hard at all.  And since by then I was pretty hungry, it was a fun chore. Slice, snack, slice, snack-oh this slice is uneven, better just munch on it now.

I hadn’t even started cooking the soup yet and it felt like I had been working on this recipe for days instead of an afternoon.

knife boy

I saved the worse task for last- the onion.  I pulled out the sharpest knife I could find, which is incredibly dangerous even in the best of circumstances.  Not the wisest move when being used by somebody whose hands have a tendency to randomly drop stuff and throw things across the room.

I sat at my kitchen table and carefully started to chop.  I have never been good at chopping onions the right way and have even watched cooking shows for tips.  Nothing has ever worked.

Soon my eyes stung and wouldn’t stop tearing and drastically uneven pieces of onion were scattered all over my table.  There had to be an easier way.

chef1

This soup was good for me, mostly- the sodium and the sausage not so much- and I was making the easiest of the easiest of versions and yet I was still struggling.

Why does everything with MS have to be so damn hard???  Even a recipe I have been making for years and watched my mother make for years before that.

As I whined about the miserably chopped onion and felt sorry for myself, my phone rang.  It was my dear, supportive friend Heather who asked what was going on.  I told her my frustrating plight.  She had good advice,

“Yvonne, there’s no reason for you to chop onions if they give you such a hard time.  You can buy them frozen, already chopped.”

Her advice was spot on.  So spot on that I remembered hearing it before.  My mom had told me that many times.  So many times that it occurred to me that I might just have bought……

Sure enough, with Heather on the phone I opened my freezer to find a bag of frozen chopped onions, lying on top of a bag of frozen, prewashed kale; bags I had bought when the cooler weather had first started me craving my favorite soup.  Now my MS frustration was no longer about how I am not even able to chop an onion and get exhausted just rinsing fresh kale, but how it’s hard to even remember the shortcuts you have already designed for yourself.

kale soup

But, ahhh the soup was good, even with the canned veggies.

And the next time I make it it will be even better with canned and frozen veggies.

That time for sure, it won’t take too much out of me.  And, well, if it does, luckily kale soup goes great with Portuguese wine.

Even luckier, my dear, supportive friend Shannon bought me an electric wine opener!

portwine

Friends, as a special gift to you I have included a link to Yankee Magazine where a Portuguese woman named Ruth O’Donnell published her version of the easy way to make kale soup,  Don’t let the Irish name fool you, she was of Portuguese descent. I swear that I put carrots and extra beans in my version- you can too.

And don’t be fooled by the part that says prep time is 20 minutes; it took me almost 20 hours!

grandmasoup

Getting Older: A Good Thing?

A multiple sclerosis guest blog by Jennifer Digmann

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Ahhh friends, autumn is here and I couldn’t be more thrilled!   The weather has been just perfect and I am so happy that I have been outside a bit, picking up some natural vitamin D.

I have been enjoying this time of year so much that I didn’t leave much time this week to write a new blog.  I was just going to offer up an oldie when new friends, Dan and Jennifer Digmann came to the rescue.

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I met Dan and Jennifer on Twitter recently, a social media site that I only moderately know how to use.  Luckily, Dan knows how to use it and he tweeted me about my blog and then I tweeted back and tweet by little tweet, I got to know him, his wife Jennifer and their awesome work.

tweet

Dan and Jennifer have been married for 9 years and both are living with multiple sclerosis.

And while that seems like a huge cosmic cruelty to have both a husband and wife struck with this sucky illness, it was actually MS that brought them together.  They met at an MS event titled “Finding Your Buried Treasure.”

buried-treasure

How cool is that?  I bet neither expected their buried treasure to be a spouse.  I am officially making more of an effort to get to more of these events!

I have been to a few and have met many wonderful people but I have yet to find a husband at one- perhaps I am not looking hard enough?

Anyway, Dan and Jennifer totally rock!   They regularly write about their experiences on their blog on their own website       www.danandJenniferdigmann.com and on the website Healthline where they also blog.

Thank you so much Jennifer and Dan- so glad to have made your acquaintance.

For your reading pleasure, dear readers, please check out Jennifer’s thoughts on an upcoming birthday.

Yum-cake!

Yum-cake!

 Getting older: A good thing?

by Jennifer Digmann

I turn the big 4-0 in less than forty days and there has been a doom-filled cloud following me for, oh let’s say, the last 320 days or so.

There is a daily countdown to the big day, November 6, on my refrigerator. This age has been hanging over my head because up until now, getting older always has been followed by a great life-altering event.

Think about it: you start driving when you turn 16; vote at 18; and drink (legally) at 21.

Even turning 30 was fantastic because that was the age when Dan and I got married, and it seemed my life really began.

older

But I am a little more than a month away from turning 40, and I can’t stop thinking that it’s just downhill from here. Forty is just plain O-L-D, and so am I.

I posted this #TBT picture of Dan and me on Facebook a few weeks ago, and my aging was noticed. Our friend Michelle commented, “Look at those fresh, young faces!”

Ouch!

Normally, I probably just would have smiled and forgot about it, but being close to turning 40, the comment stuck with me. I’m not ready to get old.

Recently as Dan and I drove to our Multiple Sclerosis (http://www.healthline.com/health-slideshow/multiple-sclerosis) support group meeting, we talked about that subject. I was lamenting about getting older when he asked about my 30s.

birthday forget

“Ah, such good times,” I waxed nostalgically. “We were married, moved into our house, I finished graduate school.”

“Yes, Jennifer, but what else?”

Whether intentional or not, I began seeing what Dan was getting at and began looking at my 30s through less rose-colored glasses.

“Well,” I thought, “39 hasn’t been all that great, especially with Trigeminal Neuralgia and my Gamma-Knife surgery not working as well as I hoped. And I haven’t driven or walked in this decade.”

With all the good stuff, this decade also kind of sucked.

getting better

And maybe that’s what Dan was getting at: in life you always have to take the good with the bad.

Perhaps it was just his sage wisdom that comes with age. After all, he just turned 42!

This conversation got me thinking about the promise of the new decade and the opportunities it has in store for me. But these opportunities won’t happen on their own. I need to take control of what I can. (link to http://www.healthline.com/video/managing-multiple-sclerosis).

I’m realizing I’m finishing my 30s to position myself for greatness in these once-feared 40s. I have started aggressive physical therapy that is focused on building my core strength and increasing my range of motion. I also took the necessary steps to begin Rituxin, a more-advanced treatment to control my MS.

All of this is very empowering and fills me with hope.

Maybe turning 40 will be better than I thought.

 Happy pre-Birthday Jennifer!!!

80s kids

 

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To Shower or not to Shower-that is the MS Question

Another multiple sclerosis dilemma

shower-cartoon

Don’t be gross.  It was a wedding; of course I was going to shower.

And no, it wasn’t MY wedding.  Seems in order for me to have a wedding I would have to find a groom somewhere.  And that just sounds really, really exhausting.

But yes, for my friend’s wedding I would shower.

And put on makeup.

And attempt to do something with my hair.

The question became, when would I do all that?

For most people, this would be a question quickly answered, maybe not even questioned at all.

But for people whose brains don’t always work the way we expect them to, issues like this can be overwhelming.

Serena and Joel, aka Bootsie (if you have read my book, MS Madness! you may remember Serena’s boyfriend Bootsie,) were tying the nautical, marital knot.  (Had to throw nautical in as the groom is a fisherman.)

wedding topper

The wedding was being held at a very busy hall and thus, could only be decorated on the morning of the 2PM wedding.  My friend Lynn and I agreed to help the maid of honor and her friend get the hall ready.

We were due at the hall at 9:30 and the church was over a 30 minute drive away from where Lynn, the hall and I all lived.

(We East Coast people measure traveling distance by time, not miles.)

wedding couple

Since decorating a hall can be sweaty and messy, my plan was to help decorate for two hours and then go home to shower and attempt to make myself pretty.

The day before the wedding the bride asked if Lynn or I could load up our car with decorating stuff and guest favors.  Being an eager beaver, I agreed before Lynn had a chance to.

It was after the bride and groom had loaded my car that I remembered that my trunk leaks when it rains.  There was no rain predicted that night but with my luck there would be an unexpected deluge and wedding items would get soaked and float away.

I called Lynn and we loaded up her car which was a good thing as we had time to talk before the big day.  And as we talked, she reminded me of the huge festival taking place between where we lived and the church which would likely add at least an hour to our travel time due to heavy traffic.

girly makeup

“So I’m thinking I’ll just get ready before we decorate and then go home to quickly change and freshen up,” she said.  “That way there will be plenty of time to get to the church.”

That was not my plan.  I was going to decorate and then shower and then put on makeup and then style my hair.

But now I was worried about the time too.  If Lynn, who as a working mom has for the last several years gotten up early and quickly gotten herself and her daughters out the door every school morning before 7:30 didn’t think she had enough time to get ready after decorating, then how could I possibly have enough time?

basic shower

MS makes me move much slower than I used to.  And since makeup is not a daily thing in my life, I need a lot of time put it on, with time to wash off the makeup mistakes I make in the process.    Maybe I should get ready before decorating?  But then it might be hard to get myself together again.  My makeup could wind up all melty and gross looking and my hair would likely be useless.

This became a big question.

I analyzed my options over and over.

I asked Lynn what to do. Maybe I should do what she was going to do?  She’s pretty smart and always looks nice so she must know what she’s talking about.

I asked my mom what to do.

I called other friends to ask them what to do.

I tried to look up what to do on the internet.  I couldn’t find anything.

All of this was silly of course.   It wasn’t my wedding so really, how much did it matter what I looked like?

facial cream

It’s just that the brain fog that comes with multiple sclerosis can make even simple decisions hard to decide.

And combine that with a big event like a wedding and then throw in a troublesome event like a huge congested festival and it can be very hard to figure out.

So after tossing and turning I decided I would just get ready twice.  I would get ready before decorating and then if I couldn’t fix what fell apart then I would just get ready again.

And so, in the morning, I showered, put on cosmetics, and sprayed hairspray, lots of hairspray.

marge

Which was actually a huge issue because as we waited for someone to unlock the doors to the hall, I was followed by a huge bee who really, really liked my hairspray.  My hair wasn’t even sprayed into a beehive but it didn’t matter, that bee was in love with my hair.

I survived.  And so did the bee.  I couldn’t kill him as I have heard bees are our friends and we need to protect them.  Plus, I am too wimpy to kill a bee.

We helped decorate and then Lynn and I each went home to get dressed.

And to re-do makeup.

And to redo hair.

girl makeup

And to add more and more hairspray.

And to worry about the ozone layer due to all the hairspray.

And somehow, I made it to the church on time.

When MS makes decisions hard to decide I sometimes find myself chilling out about the little things.

Less stress is good. In the end, I tend to get a little bit of an “aw, who cares? Life’s too short,” attitude.

Unfortunately, I only wind up thinking that after hours and hours of pondering.  One of these days I may just get the order right.

In the meantime, I just need to be glad for the big things.

Like, hey, my friend got married which is way, way more important than whether my eye liner was smudged or if I had lipstick on my teeth.

Especially since the one picture I took with the bride just happened to be under the handicapped sign.

serena wedding1

(So you’re not confused, the bride is the one in white.  I am the one unwittingly posing under the sign! Perhaps the sign says it all?)

                               Congratulations to Joel and Serena!

serena wedding3

An MS Doodle Dandy

Multiple Sclerosis patriotism

patriot girl

With the exception of my late teen/early 20’s years, I have never been much of a rebel.  I grew up with this intense need to please and so when someone tells me to do something, I do it.

I floss daily.

I get my car’s oil changed every 3500 miles.

I pay my taxes BEFORE April 15th.

I wait ten hours after eating before swimming.

About the only rebellious thing I do these days is consume raw cookie dough against the advice of both the raw dough packages and that of my older sister.   But I try to do that in the privacy of my own home so as not to offend anyone and I do feel bad about it, kind of.

This sense of doing the right thing carries over into being a good citizen, even when MS makes me feel wiped out and yucky.

I suppose if I was really a great citizen I would have skipped my brief rebel years and joined the military.  The only problem with that was the fact that I am total wimp and wouldn’t have lasted one day in boot camp.  So hats off and deep, deep gratitude to those brave folks who defend our country!

The least I can do to be a good citizen is to vote.  I understand how government works; I watched Schoolhouse Rock when I was kid.

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(I’m still totally furious that Conjunction Junction beat out I’m Just a Bill for the number 1 spot in a recent special featuring all the episodes.  I demand to know who voted for that!)

So on primary day I put on my goody two shoes and headed off to the polls.  It didn’t matter that not many people bother to vote in the primaries.  I was going to because it’s a privilege and it’s my patriotic responsibility to honor that privilege.

I even did research on who to vote for.  And by research I mean I asked my very smart friends who have ideals similar to mine who they were voting for and then I voted for that person too.

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(And I did watch a commercial or two- I try to take this voting thing seriously.)

Luckily, my town is small and since it was only a primary the polls weren’t too packed and I didn’t have to stand too long to cast my ballot. But my civic duty was not done for the week.  The next day I had jury duty.

Honestly, I wouldn’t mind serving on a jury. I actually think it would be interesting.  I just can’t imagine any lawyer would trust me on a jury with all of my cognitive issues and my extreme fatigue.   But being the good citizen that I am, I would let the court make that decision.  I was happy and honored to do what my government asked of me.

summons

The problem was, this was a lousy week to have to serve.  I had a lot going on and precious few non exhausted hours to do them in.  Of course, I didn’t know this would be the case when I got my notice, the notice that gives you the option of postponing jury duty.  Being on the road by 7:15 the morning of, standing in long lines to be processed, and waiting long hours in a hot stuffy courthouse was just not conducive to my life and my MS that week.

But it was what it was and I would just have to do my best.  I took comfort in the fact that I had one of those ‘call the day before’ notices.  Every time in the past when I received one of those, I never had to actually go in.  I would call the automated line the day before and an automated voice would tell me I was excused.  That’s what would happen with this jury service, it just had to.

When people who don’t have MS say they don’t understand ‘brain fog’ or ‘cognitive difficulties’ you are usually too fogged to explain it to them.  So allow me to do it for you.  The following is what brain fog looks like:

At 4PM on the day before my service I called the courthouse.  The instructions were clear- do not call even one minute before 4.  To be on the safe side, I waited until 4:02.

The automated voice thanked me for being a good citizen and calling.  Then it informed me that all jurors with groups numbered 0- 58 had to report.  I had been assigned group number 0060.  I had to go.

I was distressed.  I absolutely could not believe it.  How on Earth would I get through this crazy week with jury duty smack dab in the middle of it?

jurors-lounge

I thought perhaps I made a mistake.  I called again.  And again, was thanked for my service and told that all jurors in group numbers 0-58 had to report.  I was resigned to my patriotic fate.  I would just have to suck it up.

I postponed that evening’s shot so I wouldn’t face the horribly achy side effects during jury duty.

I went to bed super early.

I set two alarms to get up on time.

I stopped on the way to get some much needed caffeine.

And I stood with my burning legs in the long check in line, chatting with other potential jurors.

When it was my turn to hand in my summons, the court officer pointed out that I hadn’t needed to report at all.   WHAT??

Didn’t I call the automated number, he asked?

“I did.  It said all jurors with group numbers 0-58 had to report.  So at number 60 that means me, right?”

The frustrating thing about ‘cog fog’ is that once your brain makes a mistake, even a simple counting mistake, your brain then accepts that mistake as correct.  So even though I have known how to count since first grade and I called TWICE, I still screwed up.

I’m such a dedicated citizen that I showed up for jury duty when I didn’t even need to.

hot dogs

The court officer told me that my service was completed and kindly sent me on my way, probably noting my name and number for next time to tell the judge “this chick is way too dumb to serve, she can’t even count to 60.”

The good news was that I got back the badly needed day in the middle of the week.

The bad news was that I was so frustrated by my mistake that I wasted a lot of that day stressing over it.

Before I knew it the night passed, and when I turned on Facebook the next morning I was reminded of the date.

It was 9/11, a date no American will ever forget.

The date got me emotional.

It got me sad.

And then, it got me proud.  I started thinking about the amazing country I am lucky to live in.

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I started humming Yankee Doodle Dandy.

Here’s another way brain fog works, your mind starts wandering down seemingly insignificant paths for seemingly no apparent reason.

I looked up Yankee Doodle Dandy.

Did you know that doodle was actually an insult?  The phrase Doodle Dandy was meant to insult the earliest American patriots, doodle meaning dumb.  But they chose to adopt the phrase instead.

And so it was with me-MS dumb or not, I’m happy to be an MS Doodle Dandy; an MS Doodle Dandy who’s ready for jury duty whether she’s wanted or not.

PS  If you are humming Yankee Doodle right now than you are a true patriot for sure!

yankee doodle dandy