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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.

 

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?

 

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.

 

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.

 

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…

 

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….

 

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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Zen and the Art of Resting

Multiple sclerosis procrastinating, I mean, meditating

When I was in college, some three trillion, billion years ago, most of my dorm mates had to read a book called Zen and the Art of Motorcycle Maintenance.   I wasn’t in the class that assigned the book and so I didn’t have to.  Back then I cared very little about Zen which seemed to me to be sort of a hippy/dippy concept.  I cared even less about motorcycle maintenance.

But the title struck me and I have always thought that I should read it myself one day.  It is on my list of things to do; along with clean my house, order a new auto injector for my MS shots, meet Keith Richards and win the lottery.

I bring this up because I have been thinking about Zen a lot lately.

In my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis, I make the comment that “despite what every two-year- old on the planet will tell you, naps rock.”

But here is a secret just for you, my lovely blog readers, I actually don’t like naps.  I know many, many people with MS and without who think naps rock.  And I know several two-year-olds who greatly protest naps but will snooze away a whole afternoon if you let them.

For me, I find naps uncomfortably disorientating.  I always wake up not knowing where I am, what day it is, what time it is, freezing in the winter, hot and sweaty in the summer and in every case, desperately needing to pee.  While I try to readjust my brain and get to the bathroom quickly, I feel out of sorts.

Thus I have learned that even with the extreme fatigue MS delivers on a constant, daily, hourly, minute by minute basis, naps are not for me.  I’m still tired though and what I have discovered is that I will often fall into a state of consciousness for which there is no name.

Here’s how it used to happen-  I would start to read say, and before I knew it, my eyelids would get droopy. I would move, shift my position in some way so that I would not fall asleep.  And I wouldn’t sleep.  I would be aware of my surroundings and the state I was in, completely content but without thought or focus on anything except that I was resting.

It’s a beautiful thing.  It seems to be a state of peace and rest that must be sort of zen-like.   And so I looked up Zen to see if that was what the word meant, being in a rest so complete that it is actually more restful than sleeping.  I can make this ‘more restful than sleeping’ claim because I have a pretty active dream life.  In my dreams I’m always fighting a dragon, watching a movie or running from police.  What I am doing while I am sleeping does not seem to be resting at all.

Wikipedia describes zen as “the attainment of enlightenment” and says that the word Zen itself translates to “absorption or meditative state.”  (For the record, Wikipedia was not clear on where and when you capitalize the word zen-not to me anyway- and so I keep alternating it here in this blog post figuring at one point I will get it right.)

An “absorption or meditative state”- yes, that perfectly describes the zoning out I do while I am attempting to rest away some MS fatigue.

All of this would be well and good except that it is multiple sclerosis we are talking about and thus, there’s a problem.   Lately I’m noticing that I am falling into my own personal Zen when I wake up in the morning.  This is tricky as my morning is already pretty busy.

Usually I wake up and head directly to the bathroom.  Then I take my thyroid pill with a glass of water and have to wait 30 minutes to eat or drink anything else.  I try to use that 30 minutes as prayer time.

Then I get up and have a cup of tea while I check all of my emails and social media sites.   Then I have breakfast.  By this time it is often late in the morning, way too late to try to squeeze exercise into my routine.

Last week I woke up and somewhere between my prayer time and my cup of tea, I went to my zen place.  For over an hour I laid in bed not praying, not reading, not watching tv, not thinking, not sleeping.

It happened again twice this week.  What this means is that if I wake up around 9, by the time I do the above AND include fitting in my needed Zen, I am just having breakfast while the rest of the world is clearing their lunch dishes.

MS already robs me of much needed hours in the day by making it take longer for me to do EVERYTHING and needing more hours of sleep than most people.

And yes, I have tried to go to bed earlier but that just makes me sleep even more.  I’ve tried to set my alarm for a regular wake up time but in my dream/sleep state or even in my meditative state, my semi conscious self just shuts the alarm off, unconsciously.

Of course I worried about the severity of this particular problem.   Then I found a quote from Zen and the Art of Motorcycle Maintenance.

No I still have not read the book.  I found this quote on Goodreads thank you very much.

“The place to improve the world is first in one’s own heart and head and hands, and then work outward from there.”

Robert M. Pirsig

That made me feel better.  I am not being lazy when I am in my zen and even if I don’t have the time for Zen, it’s crucial as I am improving the world by improving my heart and my head and my hands.

Yes, there was a time when I would get a lot more done in my mornings and be productive but that was zen, this is now.  Now, I must spend at least part of my day on improving the world.

Phew-what a relief.

If you are looking for me you can likely find me in my meditative state, perhaps under my little brother’s motorcycle….

Happy Father’s Day friends!  The picture below shows my oldest nephew in his Zen place with his two sons.   I have included it as a nod to zen and fathers and because I think it’s a freaking riot!

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Finally, speaking of Goodreads– ok, it was me who mentioned Goodreads a couple of paragraphs back to usher in this handy tie in- don’t forget the Goodreads giveaway for MS Madness!   A “Giggle More, Cry Less” Story of Multiple Sclerosis is only open until June 22!

The link is below if you know anyone who would like to try to win a free copy….

MS Madness Goodreads Giveaway

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100 MS Episodes

Multiple Sclerosis Comedy

Stop the presses!

Call Willard Scott!

Light the candles!

I’m turning 100 today!

And believe me; I have the aches, the pains, the pills and the posts to prove it!

Perhaps you’re confused. While MS often makes me feel 100, you are thinking to yourself, she can’t really be THAT old, can she? If so, the broad looks pretty good; she doesn’t look a day over 91.

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Ahh, thank you for the encouragement friends! Allow me to be more specific. Today marks my 100th blog post making my blog 100!!!

Who’d have thunk it-that this little blog I started over three years ago would live to be 100? For you fact checkers, history buffs, and my future Wikipedia biographer, (so hoping to get a Wikipedia biography someday-that’s how you know you’ve made it,) the first blog posting was on 11/27/11. The number 100 includes 15 blogs that I wrote for the website MSRelief. com between May of 2012 and May of 2013.

I was excited to reach 100, thinking that it was a big deal. I was reminded of TV commercials for popular sitcoms that announce “our 100th episode airs on Tuesday!” It seemed fitting. Perhaps my little blog is like a written MS sitcom.

Being competitive, I decided to compare my number of episodes with some of my favorite sitcoms. I was crushed to learn that Modern Family has reached 115. They started 2 years before me but still.

 

I thought I would go back in history to feel better. Laverne and Shirley had 178- even more depressing!

I researched further and discovered that Gilligan’s Island only had 98 episodes.

Phew, that makes me feel better. Instead of Gilligan, I have multiple sclerosis in this wacky comedy. According to Wikipedia-my go to website for factual research- comedy means work generally intended to be humorous or to amuse by inducing laughter.

Gotcha Gilligan!

 

Gunning for you Laverne!

When I started this MS humor blog foray, a dear friend and fellow writer said “you know you’ll run out of material after a while.” But oh, how she underestimated multiple sclerosis. Seems MS likes to give me A LOT to work with.

In the thirty months since I began the yvonnedesousa.com blog (I guess I really should give it a better name-too bad How I Met Your Mother is already taken,) I have whined- Feelin Hot, Hot, Hot, Call Me Oscar, pined-Taffy Summer, Too Many Steves and learned some silly songs- I Feel Icky, 12 Days of Christmas MS Style.

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Speaking of Christmas, this blog has celebrated the holidays-What Do MS and Christmas Have in Common, Resolve This, When MS and Lent Collide and given advice- 10 Things to Never Say to Someone with MS and Major Radioactive Insanity.

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You, dear readers, have watched me work out- Me and My Wii, Flipnastics, and MS Extreme Sports and helped me improve my diet-Kale the New Frontier, Once Bitten, and Floored by Broccoli, Tricked by a Kid.

You’ve watched me survive some vicious storms- Stormy Sleepy Sandy and Could Be Minutes, Could Be Days and helped me clean up- Tumble Bunnies, Mr. Clean is the Man for Me.

You were there for me when I was forced to say goodbye- Just Not Feeling It and A Shower Story and you read along while I shared my deepest, darkest neurosis-This MS Moment is Brought to you by the Letters ‘F’ and ‘U’ and the Number ‘2’ and It’s On My List.

When I went on crazy adventures, you were there to laugh at me- Scooter Stalker and Did You Hear the One about the One MSer who Drove the Other MSer to the Neurologist.

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We lamented the strangest of the strange when it comes to MS symptoms-All Aboard, MS Counts, MS Shuffle and Shake.

And together we enjoyed the music of the best band in the world- Like an MS Rolling Stone and MS Sucks.

Through it all, I’ve done my best to provide you, friends, with sage and hard earned wisdom- Stupid MS, Invisible Idiocy and MS is a Conundrum.

Wow, remembering all of this is making me super tired. Then again, I get super tired just taking off my shoes.

The point is, this 100th blog post calls for a celebration!

And I wanted to share this celebration with all of you to thank you for your awesome support.

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Now, please, no gifts required. Yes, I know how generous you are but it’s enough of a gift for me to know that there are people as wonderful as yourselves who read these little notes I post once a week.

But, if you happen to be one of those folks who are so generous that you bring a gift to the “No gifts please” events, far be it from me to rob you of that special joy. While I can always use alcohol swabs, that is not very exciting.

An exciting gift for me would be for you to read my new book MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis and if you enjoy it, tell all your friends and ask them to tell all of their friends!

That would be a super duper 100th Episode gift!

Thank you and I’ll be thinking of all of you when I blow out the candles Gilligan is lighting for my blog right now..

 

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MS Puzzle Pieces

Clearing up some multiple sclerosis crazy

Multiple sclerosis is nothing if not a frustrating learning curve. Wikipedia’s definition of a learning curve (and who knows where THAT comes from), states “the increase of information is sharpest after the initial attempts, and then gradually evens out, meaning that less and less new information is retained after each repetition.”

I’m not even sure what that means. The point is, since my diagnosis I have had to learn many things over and over again. I would learn them, forget them, re-learn them, discover that what I learned is no longer valid, unlearn it, and learn it again in a new way. Phew!

Add to that, a lot of what you learn does not make much sense and leaves you scratching your head trying to figure out how or if it is even helpful.. MS is like a huge jigsaw puzzle with MS’er’s trying to fit all the puzzling puzzle pieces into place.

If you are newly diagnosed, I want to spare you as much frustration as possible. Since multiple sclerosis is different for everyone, that means whatever I share with you may or may not apply, and may or may not be worth learning.

Still, I am willing to share, so, before I forget any of these puzzling bits of information, let me list some of them for you.

-If you have MS, you should drink a lot of water to help maintain your health- water is great for you.

-People with MS often have bladder issues that can cause frequent trips to the bathroom or accidents.

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-Drinking less water can help alleviate some of the above.

-Or, you can take medication to also help alleviate your bladder symptoms.

-The medication will cause you the worst dry mouth you have ever had.

-The only relief for the dry mouth is drinking more water which will cancel out the effects of the medication.

MS is an invisible illness- you often won’t look like you have MS.

-If you don’t look like you have MS, people will wonder why you are tired all the time.

-When you tell them it is because you have MS, they won’t believe you and will think you are just lazy.

-When you try to explain that is not the case, they will say you are in making excuses or are in denial.

 

MS CAN make you look like you are drunk.

-When you tell people you are not drunk, they will say you are in even more denial.

-Treating MS costs a lot of money.

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-In order to get money, you need to work.

-Working makes you so tired that you may screw up at work.

-This causes your boss to think that maybe you shouldn’t work as you are too tired.

 

-You can get energy from eating healthy foods and exercising.

-You need energy to prepare healthy foods and to exercise.

And finally,

Multiple Sclerosis is so complicated, there is a lot of information you need to remember.

Multiple Sclerosis can often cause difficulty with memory.

I hope you find this information helpful, friends. And I hope you remember it as I have already forgotten.

Someone please remind me, wasn’t I working on a puzzle?

 

Happy Day after the 4th of July friends!  Early summer has kicked my butt a bit.  If some of this sounds familiar it may be because this blog was previously posted on MSRelief.com   

I promise, really promise to post an original blog next week!

 

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