Guest Blog- Living with a Disability

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I have something to share with you, my friends.  (You may want to make sure you’re sitting down.)  Here it is- living with a chronic illness is EXHAUSTING!!

I know, you’re shocked.  Believe me, I was shocked too.  But it’s the truth.

Living with chronic illness is so exhausting that sometimes it’s hard to do even the simplest of things.  Even fun things.  Even things you usually enjoy.  Like, say, keeping up with a chronic illness humor blog.  

Even when MS gives you great material like putting your toothpaste on the wrong end of your toothbrush and then wondering why brushing your teeth feels different.

Or, trying to fight your exhaustion by playing twenty rounds of solitaire, losing each game and only THEN, discovering you aren’t playing with a full deck.

In the blogging world you might get offers for a fellow writer to guest blog. And since my exhaustion has made my blog awfully quiet these days I was thrilled when a guest blogger wrote to me.  I was even more thrilled when she said she wanted to write about HUMOR- one of my favorite topics!

So this week, please enjoy a guest blog from across the globe by Rebecca Moore, founder of the website Able Rise.

Living With A Disability: How To Face Life With Humor

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Living with a disability can sometimes make a person feel as though they cannot separate themselves–their attitude, personality, and love of life–from their physical or mental condition. This is due, in part, to the fact that so many people cannot see around the disability to the person who lives with it. This can be frustrating and can lead to a darkened view of the world, a cynicism that makes some want to never leave the comfort of their own home. “Netflix doesn’t judge me!” you might say to yourself. “I’m just going to stay here and binge-watch Breaking Bad.”

For others, the frustration comes in after an acquired disability, when they must learn to adjust to daily life with a wheelchair or crutches. The stares and curious questions pale in comparison to learning how to live with unwieldy equipment and home modifications, how to maneuver in public spaces, and how to carry a purse and a cup of coffee at the same time.

The first thing to do is throw off all the expectations that others have for you. Next, throw out all those expectations you put on yourself. Pretend you’re cleaning out the fridge. Those ideas about not being able to cook, clean, go to school, and work are like old milk: outdated and kind of stinky. The fears about living a full life are exactly like that well-intentioned bunch of kale in the vegetable crisper; you bought it a week ago because everyone keeps going on about how healthy it is, but now it’s brown around the edges because no one really likes eating kale. No one. Get it out of here! And while you’re at it, lose those fears, because there’s no reason you can’t live whatever life you envision for yourself. It’s just going to take some practice and a little humor.

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Open yourself up to new relationships

It’s scary to open up to new people, especially when you already feel marginalized. Making friends as an adult isn’t as easy as it was when you were five and your best friend was the boy in the He-Man t-shirt at the playground. Did you get his name? It doesn’t matter. He loved He-Man and that was enough. Now you have to involve feelings and talking about yourself and getting past the hump of polite but awkward conversation about your disability, and you know what? It’s totally worth it. Some people won’t be as invested as you are, and not every new person you meet will become a close friend. Some of them may even say ugly things or unintentionally bring you down; unfortunately, those people are everywhere. Don’t let them ruin your day. Just know that there are some pretty amazing people out there, and making connections with them can help you feel less alone, afraid, and frustrated.

Learn the difference between honesty and flattery

For those without a disability, it can be hard to find a point of common ground with a person who is living with one. They may not know that they can just speak to you like a normal person because they might be afraid of hurting your feelings or saying the wrong thing. Try to be patient and remember what it was like to train your dog not to jump on people: stay calm, be firm, and keep repeating to yourself that they just don’t know any better until you teach them. When you meet someone who feels they can just be themselves around you–and give you their honest opinion about anything rather than praising you every chance they get for being so brave–hold onto them. These people are the ones who will help you get through this crazy life.

Celebrate small victories

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Remember that life is what you make it. Facing it with a little humor and patience can go a long way toward keeping you happy and healthy, and so can allowing yourself to celebrate the little things. Were you able to walk around the mall for an hour with your shopaholic sister without feeling tired? Awesome! Reward yourself with a treat and keep up the good work.

Note 1-  I agree with everything Rebecca has shared in this guest blog except for one small, minor comment.  If you have kale lying around make Portuguese Kale Soup!  It is the comfort food of my childhood and trust me, it’s so good that it took me over thirty years to realize that kale was actually a vegetable!  Pair it with some good bread and wine (also from my childhood) and you’ll feel much better and much gigglier than you did before!

Note 2- Rebecca Moore runs Able Rise, which is dedicated to accessibility education.  Rebecca’s mission is to provide support to people with disabilities and to help educate their loved ones on accessibility.

Note 3-  The toothpaste thing and the Solitaire thing I mentioned at the beginning of this blog actually happened to other people I know but they were just too good and too MS like not to share!

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Note 4- Photo Credits

Sleepy Emoticon courtesy of farconville at FreeDigitalPhotos.net

Swimmer Photo via Pixabay by Skeeze

Peace Out Emoticon courtesy of farconville at FreeDigitalPhotos.net

Smiley Photo via Pixabay by Alexas_Fotos

Sun courtesy of digitalart at FreeDigitalPhotos.net

 

Bigly Annoyed

An MS nonpolitical political post

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Dear Mr. Trump,

I would like my word back please.  You know the word.  The one people are teasing you about and saying you made up.  I know that you say that the news media is against you but I actual saw several trying to help.  They slowed down your words because they thought you might be saying “big league” and if you were saying “big league” they wouldn’t need to mock you for saying “bigly.” I’m not mocking you however because “bigly” is a perfectly acceptable word.  I know, because my MS brain created it.

Sometimes our thoughts come so fast, we don’t know if the thing that we are describing is a noun, deserving an adjective, or a verb requiring an adverb.  So “bigly” combines “big” for nouns and “greatly” for verbs making it the perfect word for all occasions.  It’s sort of like the other word I created “partalee,” a word my brain came up with when I couldn’t decide if I wanted to say “partly” or “partially.”  Now I don’t have to choose; perfect MS reasoning.

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My only question is when did you hear me say “bigly?”  Were you behind me in Walmart when I told the nice cashier how I bigly appreciated their low prices?  Were you on the other side of the divider at H&R Block when I said I was bigly pleased that I didn’t make enough money to need to pay any taxes?

Well, wherever you heard me use “bigly” I guess I can let it go.  BUT, if Merriam-Webster decides to add “bigly” to their next dictionary I WILL sue.  Perhaps you can help me with that?

Sincerely,

Yvonne deSousa

The thing is, after I finished my letter I grew concerned.  What if Donald Trump didn’t overhear me say bigly?  What if he came up with it on his own?  What does that mean about his brain? Could he have cognitive deficiencies from multiple sclerosis too?

I decided to investigate and the results are not encouraging.  Like me, he forgets things.id-100265731

He forgets meeting people he has met.

He forgets things he says he has said.

He forgets his opinions on things.

He even forgets important dates!  I’ll see you at the polls on November 28th my scary haired friend.

But so what; lots of people forget things.   But he also repeats himself just like I do!!!  I’m constantly saying “MS sucks” or “I’m so sick and tired of being sick and tired” or “Keith Richards is the man!”   Donald constantly says “believe me” or “disaster” or “great again.”

Perhaps those words are important and so not surprising that he repeats them.  It’s important that I share Keith’s greatness with the world and so repeating things isn’t in itself a concern.id-100285623

But what about the lack of focus and the lack of “umph” (not a word my MS brain created) to get things done?  Whenever he’s asked a question his brain takes over and he’ll be talking about healthcare and the next thing you know he’s talking about emails.

I do this kind of thing ALL THE TIME!

And he keeps meaning to release his tax returns and he’s promised people he’ll release his tax returns but he just can’t seem to get it done.

I can so relate…

Still, I wasn’t completely convinced until I saw that he also has trouble explaining what he means.  He knows what he’s thinking and knows the wonderful plans he has but when he wants to share them with other people he just can’t get the words out.  That is such a classic example of MS that I’m now very worried.

Can a person with multiple sclerosis handle having control of the country?

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Perhaps.

I couldn’t do it.  I can’t even handle having control of my TV remote control.

But they do say that MS affects people differently so maybe if he is elected he’ll do alright.

But still, I’d feel better if we knew for sure.  So Mr. Trump, for your health and for the health of our nation, I think I few MRI’s are in order.  Perhaps a spinal tap as well.   And while you’re at it, maybe throw in some neuro-psych testing too, just to be safe….

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Happy Halloween my friends!   I was going to re-post a Halloween blog but I thought the 2016 Presidential election was scary enough!  Can we dare hope that this whole thing is just a Halloween trick and we’ll wake up on November 1st to discover that our treat is other candidates?  Well, one can dream.

Or, one can have some really, bigly nightmares!

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The Curious Case of Multiple Sclerosis Part 3

Can’t Stop Going

Last night happened to be one of the worst MS bad bladder nights I’ve had in a long time.  As such, I feel wicked crappy today. Or, I guess I should say, wicked pissy.  

This is getting old, very old.  I’m so frustrated that I thought I should write a blog about it.  Then I remembered I already did.  

So for those of you who can relate to MS really pissing you off, this old post is for you.

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One would think that a subtitle called “can’t stop going,” would refer to a good thing, something you would find on an inspirational poster, or in a pop song geared towards the tween set; an affirmation if you will. But when it comes to this week’s blog, you would be wrong.

Very wrong. So wrong that I may just want to get violent and punch something wrong. When something makes me want to become violent, what can I do but write about it? At least writing keeps me out of jail and protects my already tingly fingers from more aches.

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When I say “can’t stop going,” I am actually referring to one of my insidious MS symptoms, bladder issues. In my case, I have to use the bathroom constantly and for normal people, that is the end of the story. You go, you’re done; at least for a few hours.

Not for me. No, my bathroom going trips have become so constant they are hard to believe. Which is why they are part of my series on The Curious Case of Multiple Sclerosis, blog posts that explore the particularly cruel irony of some aspect of living with MS.

(If you are bored, see prior posts Part 1 that discusses aging and Part 2 that discusses the difficulty of maintaining a healthy diet.)

But back to my current problem. If this rant sounds familiar it is likely because I have ranted about it before, a lot. I have even used the line, “these bladder issues are really starting to piss me off.” (Pun totally intended.)

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The line is not mine but my sister Laurie’s and before I used it as I thought while accurate, it was also funny. That was when my bladder issues happened at night and while it made trying to sleep frustrating and difficult, it was manageable; as long as there was something good on TV at 3 AM.

But lately, the frequency of having to go relentlessly and of then not going completely when I do go, is happening throughout the day as well. My bathroom trips are turning into revolving doors. In the time it takes me to wash my hands and leave the bathroom I have to go again and repeat the process.

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Really, what is the point of going at all?

The irony of this is water. Lately, in fact just as this issue started acting up, all I hear is how good water is for you.

I know this. I have given up diet coke and am drinking a lot more water. I have also learned to drink it earlier in the day to avoid the night problem so I can sleep. Now I just need to spend the day in the bathroom.

The medication I take for this problem does help but only a little bit. And it causes wicked dry mouth which means more water. Seems everywhere I look I am reading articles on how dehydrated people are and how crucial water is to your diet. Most people can handle this added H2O intake.

Me, I can handle it great. As long as I don’t need a life outside of the bathroom.

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I should discuss this with my neurologist but as I have mentioned before, he is kind of cute. How can I possibly talk to him about this? And even if I did, I am afraid the next step in treating this issue will involve tools that I don’t even want to think about. (Private message me if you have questions about this.)

But I know that I should bring it up and I probably will at my next appointment. (Maybe by then it will have gone away?) Until then, how do I deal?

One MS professional told me to do Kegel exercises. In case you aren’t aware, Kegel’s are pelvic muscle exercises Cosmopolitan recommended in the 80’s for a more exciting benefit. In a Kegel irony of their own, they were developed by a scientist, which likely makes you unlikely to be interested in the exciting benefits.

(Again, private message me- I am trying to keep this blog at a PG rating.)

The thing about Kegel’s is that they are super easy to do and can be done anywhere. Even in the bathroom.

The MS irony here? I forget to do them! Even when I write myself a note, I forget to read the note! Easy exercise- rare and good. Forgetting the exercises-very, very bad.

I heard that this particular bladder problem can lead to UTI’s which are also very, very bad. One way to prevent that is by drinking more water. (No, I am not kidding. According to the internet, that is a legitimate way to deal with this problem.)

Another way is to eat cranberries. I am a New England girl and so cranberries are my world. I can even tell you how they are harvested. Oatmeal raisin cookies? No way. Oatmeal cranberry cookies- awesome.

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But I am on a health kick so I decided I would get my cranberries in an organic, non processed, no sugar way. Raw cranberries are a little bitter and so I poured a glass of super healthy juice. And then I immediately spit it out as it was disgusting.

Apparently, even for people born and bred in cran country, you still need a little sugar to appreciate them.

So what’s a girl to do? I added cranberry tablets to my daily meds list which meant more water to get them down and then headed to the busiest room in my house. If you are looking for me or my TV, we have permanently moved into the porcelain and tile room.

And if that pisses you off, well, you likely have a bathroom of your own…

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One Pill or Another; Not Gonna Getcha, Getcha, Getcha

A tale of multiple sclerosis

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I dropped a pill while I was driving.

My fault for multi-tasking.

So what if I was driving, texting, eating pizza, grabbing the pill AND trying to open my water bottle?  My neuro-psychological testing did show that my multi-tasking skills were pretty much shot.

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Before you panic, I’m exaggerating.  I wasn’t really texting and was only thinking about eating pizza- perhaps for lunch.  And I was stopped at a red light.  But there were people behind me when the light turned green and so I couldn’t locate and pick up the little pill within the 5 second rule that claims that no matter how disgusting my car mat was, I could still swallow the damn thing.

5 seconds was not enough time to even pull over, park and find the pill and so I decided to leave it be.   The problem was, that was the only pill of that prescription that I had with me.

I had put it in a little plastic case and now it was under my brakes, hanging out with old M&M’s and stale cracker crumbs.  (You know those commercials that say M&M’s don’t melt in your hand?  Well, let me tell you, they do melt on your car mats if the temperature hovers over 90 degrees and you’ve stepped on them a time or two.)id-10046558

If I had brought the pill bottle I could just grab another one but I hadn’t brought all of my prescriptions with me.  I couldn’t.  Where would I put them?  I drive a Camry, not a mini-van.

This little bit of clumsy means I would go without that pill for one day-no biggie.

But it was.

See, this particular pill is one I take because my MS disease modifying drugs give me wicked aches, which means I need to take Aleve to help combat them.  Aleve gives me wicked bad heartburn which, it turns out, is not only terribly uncomfortable but dangerous in constant measure.  The pill I dropped was a prescription super duper antacid because Larry the Cable Guy has no idea how difficult MS heartburn is compared to his regular old tailgating heartburn.

Who knew the guy was such a wimp?

I spent the day with the horrible heartburn which meant no pizza for lunch which meant nothing really for lunch as I couldn’t remember foods mild enough to eat that my stomach would tolerate.   I did try.  That chocolate shake seemed mild enough but no….

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It seemed silly to stop somewhere and buy over the counter antacids because for one, they are lame and for another, I’ve got about four open bottles at home and what a waste to buy another. In fact, the bottles I have I probably did buy on the road one day after messing up the prescription one.

By the time I got home I didn’t know if I should take the pill so late in the day. I mean a fresh one, not the one combined with beach sand and gravel.  It was supposed to be a shot night which meant no Aleve which meant screw doing my shot which meant there went my Mon/Wed/Friday schedule I tell my MS nurse I stick to.

I had plans the next night where I wouldn’t get home until late which meant if I did the shot then, Aleve or no Aleve, my next day would be ruined by post shot aches-the later I do my shot the worse the aches are.  And so it goes.  If I missed that then I would be really off schedule on the important drugs all because I dropped a slightly less important one.

id-100374013This is one of the ways MS likes to mess with me.  Dropping a pill shouldn’t be a big deal in the grand scheme of things.  But it does cause some altering and resetting and re-balancing and re-figuring for the next 48 hours or so.

It reminds me of the time I borrowed my friend’s GPS and accidentally took a wrong turn.  The device freaked out and started stating RECALCULATING in seriously important letters and tone.  It was kind of funny how upset it got; I started purposely taking wrong turns just to shake it up a bit.

This is what I needed to do with my drug taking schedule- RECALCULATING!  RECALCULATING!

And in this case it was just a pill due to a pill due to my MS shot!  I can’t even think about what would happen if I dropped one of my actual shots.

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(Well, probably nothing- they have a little cap on them that keeps them sanitized until you plunge them into your butt or arm or tummy or wherever….   You could drop one into a well, rappel down the side of the well, fish the shot out -all of which you would do because those things are ridiculously expensive- and still stab yourself with the injection.)

So what does this little tale have to do with MS?  I offer it to explain the unusual way MS insists on taxing our minds, keeping our brain cells working so to speak.  That constant RECALCULATING is exhausting!

And people wonder why my MS friends and I are so freaking tired all the freaking time!!!

PS   Does anyone want to help me clean my car?  There’s some free M&Ms in it for you…id-100135056

 

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Lessons from a Junkaholic

Tips for an unfun MS diet

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This early blog post of mine was recently featured on the website humorwriters.org, a website out of the University of Dayton inspired by one of their most famous students, Erma Bombeck.  To have my picture on the same web page as Ms. Bombeck was a huge honor and I can’t thank them enough!!!

First came the diagnosis; which was terrifying enough.   I had multiple sclerosis. That information was overwhelming.

Then I was told something that was meant to be encouraging but instead, added more horror to my world.  I could help control the severity of my fatigue and other MS symptoms, as well as my overall health, by committing to a healthy diet.  I am shaking right now just thinking about it.

You see, my name is Yvonne and I am a Junk-a-holic.  Sweets, meats, salty things, starchy things, and all things processed were my main food groups.

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Monday’s meal plan, drive-through.

Tuesday’s meal plan, dinner with my best buds, Ben and Jerry.

Wednesday, a healthy night- frozen dinner.

Thursday, processed pasta, the cheesier the better.

Friday, a social outing, dinner out with friends.

Saturday, takeout pizza of course.

Sunday, combo night, leftover takeout pizza and leftover takeout from Friday.

I was not completely hopeless. I knew that my five foods groups were not the food pyramid the experts recommended, but it worked for me.   But the people in the know, (everyone), insisted that I get serious about my diet.

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I am, but it has been a long and bumpy road, fraught with many nutritional errors and setbacks.  I thought maybe I should share some of the shocking things I learned along the way to help all of you on your path to a healthier diet.  If you are struggling with the same issue of incorporating a healthy diet into your world, please learn from the following mistakes I made.

  1. Reading Shape magazine is not enough.  You actually have to do what the articles tell you to do.
  2. Reeses Chocolate Peanut Butter Pumpkins are not actually made from pumpkins and thus, are not good for you.
  3. Similarly, a Mounds candy bar does not count as two servings of fruit. If you get the king size bar however, and eat the whole thing, it does count as half of one fruit serving.
  4. This one is really confusing. Just because you buy something at Trader Joe’s or Whole Foods Market, it does not mean it is 100% healthy.  Some of their items may actually be only 60% healthy.  I know right, what’s the point?
  5. Also frustrating, not everything in the yogurt section of the grocery store is good for you. For some reason, adding flavors, candy and cookies to various yogurts greatly diminishes their nutritional value.  Doesn’t seem fair but there it is.
  6. Some spices can add health benefits to your diet. Cinnamon is a classic example.  Cinnamon is good for you.  Yet, the experts don’t suggest sprinkling cinnamon on ice cream and puddings as the best way to reap the cinnamon benefits.
  7. You need protein in your diet and hamburger has protein. But big, fat juicy hamburgers are not that good for you.
  8. You need dairy in your diet and ice cream is full of dairy. Yet a big, fat ice cream sundae is not good for you.
  9. You need grains in your diet and bread is made from grains. But for some insane reason, fried bread dough is not good for you.
  10. Finally, it turns out, and this one broke my heart, raw cookie dough is bad for you and the calories do count. I thought the calories didn’t register until you actually baked the cookies.  It is a cruel, cruel world we live in friends.

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Try not to be too overwhelmed with these lessons. Basically, what I have had to train my Junkaholic brain to do is accept that if doesn’t look super delicious, it is likely good for you.

To offer some encouragement to my MS friends, allow me to end on a positive note.  Once you start eating the not so good looking things, you do start to feel a little better. 

And before you know it, they aren’t that bad…

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1st awesome image courtesy of humorwriters.org

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Rock in a Windy Place

A decisive multiple sclerosis night out

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Is MS the reason why I’m so freaking indecisive?

I’ve thought about it a lot and can’t decide.

Last Saturday I had plans to meet up with my equally indecisive friend, Lucy.  Not the young Lucy from an earlier post, Out of the Mouth of Lucy; this Lucy is an adult and we have been friends for years.

We couldn’t decide what we were going to do that Saturday night- we just knew we wanted to do something.

Someone from work had given Lucy free tickets to see a live band that we had never heard of.  The words “free” and “live band” should have definitely defined our options but we just weren’t sure.

Multiple sclerosis was certainly a factor in my indecision but not in the way you might think.  The loud noise and fatigue worries that usually come with me to social events actually slipped my mind this time.

My worry was the venue.  It was a tent about 25 miles away located next to an abandoned, creepy, air force base on a cliff overlooking the ocean.

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What’s wrong with that?

A tent means a tent which means no facilities which means the dreaded port-a-potty.

Complicating my horrific MS bladder is my greatly increasing germ-a-phobia and port-a-potties I just can’t do.  I don’t care about the tricks people have shared with me for using them. Just the idea of opening the door sent me cringing……

But still, live music for free, I was tempted.

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Lucy showed up at my house and we discussed our evening options.

“What do you want to do?”

“I don’t know, what do you want to do?

Back and forth we went until we couldn’t take it anymore and our night was flashing by.  We finally wrote our different options on folded pieces of paper.  I made Lucy pick-I couldn’t handle the pressure.

The tent won.  So I used the bathroom for what would likely be the last time in several hours and we started out.

Five miles into our journey the sky darkened.

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Ten miles in we heard thunder and saw streak lightening.

“Do you think we should turn back?”

“I don’t know, what do you think we should do?”

“I don’t know, what do you think we should do?”

The rains came just before we reached our destination.  But once in the parking lot it seemed to let up a bit.

It was then I made my only decisive decision of the evening.

“Lucy, I think it’s letting up- let’s make a run for it.”

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No sooner did we walk away from the car when the downpour hit, complete with heavy winds and, of all things, hail!

So much for decisions.

We rushed under the huge canvas arriving soaked, pelted, and bruised.   We still hadn’t totally committed to this concert but it would have been silly to leave at that point.

So we shook ourselves off, headed to the bar and then found seats on the edge of the venue, should we decide to bail early.  In minutes the wind grew fierce-so fierce it blew out the canvas sides of the tent leaving us wetter and even more beaten up.

It scared us too and we did the wise thing, running to seats deeper underneath the now shaking tent.

We watched the frames and speakers wobbly above us as we listened to the howling wind.

Should we leave?

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It didn’t help when I heard the fellow townie behind me say, “aye, there’s a squall a-comin. Hope this bitch is anchored down.”

Nor did it help when the band took the stage and the lead singer held up his beer, toasted the crowd and exclaimed “Well, if we go down at least we go down together.”

While amusing it was also concerning. I’m not usually so wimpy but being surrounded by 200 plus people when a huge, flapping, filthy canvas collapsed in a freak storm seemed to me to be the stuff of nightly news proportions.

I’m not afraid of the end; I just worry about how the end happens.  If this was to be the end it didn’t seem so great, being trampled by an audience at a concert I hadn’t committed to with a band I wasn’t sure I would even like.

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I almost would have preferred to be tossed from the tent into the Atlantic just a few yards beyond.  Perhaps entering a free standing port-a-potty wasn’t such a bad idea after all.

Yes, leaving would have been the smart thing to do.  But I had just shelled out $7 for a little plastic cup of cheap wine.  I figured we could reassess the situation after a few more gulps.

The end would seem smoother if I had a small buzz going on.

Thing is, about two songs in, and four sips down, we stopped worrying about the risky weather.  The “bitch” must have been anchored down or maybe the winds let up. Who knows?

I can’t tell you because the band was that good!

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Not AEG

Before we knew it, the Adam Ezra Group had us clapping, then chair dancing and then actually dancing

Soon I forgot about port-a-potties and tents.  I forgot about the end and being indecisive. I even forgot about expensive cheap wine.

The whole night seemed to fit together perfectly when Adam Ezra introduced one song based on a humiliating experience of his.  At the end of his introduction he asked “isn’t laughing at our embarrassing moments healing in some way, especially when sharing those moments with others?”

I could relate.  Isn’t that exactly what I do?  Don’t I take the humiliating things multiple sclerosis makes me do, because of course, I’d never do stupid stuff on my own, and then share it with all of you so we can laugh at me, and at MS together?

And I realized that perhaps it’s the unexpected moments, the ones you really don’t decide, that make life fun.

And this band was definitely fun!

There’s one terrible, horrible side note however.

The last song the group performed was an acoustic cover and they asked the audience to come down to the stage and sing it with them. Everyone was pretty hyped and so we headed down, excited to participate.

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But then I heard the opening notes of all things, of all the songs in the world, “Let it Be”- a Beatles song!

As you likely know from millions of my prior posts, I’m a Stones fan.  And while there are many people who can be both a Rolling Stones fan and a Beatles fan, I’m not one of them.

I glared at Lucy and her smile told me to get over it.

And I did!

The Adam Ezra Group was that good!

Adam was being filmed as he walked among us singing and playing.  At one point he stood on a chair directly in front of me.  And so, you my friends and readers who happen to be Beatles fan should be pleasantly shocked to know that someone, somewhere has footage of me dancing and singing to a Beatles song!

What has the world come too???

If you get a chance to check out the Adam Ezra Group either in person or on line you won’t be disappointed! And no, I’m not being paid to promote them.  I just love their music and think you will too!

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If you have Trouble with too much Sleep, you might have MS

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This blog post is dedicated to my chronic illness friends who have trouble sleeping. I feel ya.  I have trouble with sleep too but my trouble is a little different….

I love sleep.

I love my bed as it is super comfy for sleep.

And after I pee 10-12 times I sleep pretty well.  It’s quite coincidental actually, as I usually get about 10-12 hours of sleep.  One hour for each time I was forced out of bed and into the bathroom “one last time…”

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This isn’t a new thing as sleep and I have always gotten along- too much really.  I’ve never been known to sleep walk. And the jury is out on if I snore, depending on whom you ask.

But I have a pretty active sleep life.  Despite the lack of sleep walking one time several years ago I woke up, brushed my teeth, and took a shower.  When I went into my bedroom to get dressed I realized it was only 3AM.

Another time, a fingernail on my left hand scratched the letter Y onto my right hand.  I noticed when I woke up.  I kid you not, the letter Y, first letter of my first name.  It was as if part of my sleeping body wanted to remind the other part of my identity.

And then there are the dreams.

They are super intense, almost like a movie.  In fact, one night I dreamed I was watching a movie and in the dream about watching a movie was an actual movie!  If I wasn’t so tired when I woke up I should have written out the movie’s screenplay. Maybe if I had, I would be too busy hanging with Bradley Cooper and Matthew McConaughey to have time to write this blog.

BUT, I digress.  (I have MS-it’s what I do.  My whole life has become a digession.)

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Anyway, enter multiple sclerosis into my active dream life.  I once asked my first neurologist if very intense dreams could be part of the reason for my very intense fatigue.  She said no, because if I’m dreaming, I’m in very restful REM sleep.

Really?  It doesn’t feel so restful when I’m scarring identity marks onto my body.

(Note- This was the same neurologist who told me if I was having trouble describing my cognitive issues I must not have any.)

After a pretty crazy and sometimes overwhelming month I recently gave myself several days of rest.  I took it easy and tried to catch my brain and body up on life.  I did use the time to restart an exercise routine I hope to (FINALLY) keep up with.ID-100361589

Four nights after this self-imposed relaxation exile, I woke up feeling pretty good.  Except for my upper left arm which felt like it had been punched, hard.

I was alone and there was no obvious evidence that someone had broken in and beaten me up.  Did my right arm do that?

There wasn’t any bruising but it hurt.  It would make total MS sense if I had done a shot in that area in the last couple of days.  I hadn’t. I had done butt shots but my butt felt fine.

I chalked this up to more MS weirdness and mostly just found it fascinating.

Until the next night when my dreams were out of control.

There was the first dream which is a regular one.  I’m at my old job and working part-time to help them get organized and before I know it I’m running the whole show, months have gone by and my old boss refuses to pay me.

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Typical dream stuff.

But the second dream involved my needing to go to my hometown 30 miles away and choosing to bike there as a means of transportation.  I make it about 20 miles and then start to cry.  Someone in my dream gives me a ride and then when I have to come back I decide to bike again.  But after ten miles I’m crying and luckily find a bus to give me a ride.

The reason why this was so weird is anyone who knows me knows that I’ve never been much of a bike rider.  If I had to get somewhere 30 miles away I would do better walking there than biking.

Not hiding tooth

Not hiding tooth

I think it comes from the trauma of a bike accident when I was ten that caused me to chip my newly developed bucked tooth, creating a super goofy smile that lasted well past my braces.  Any type of fix dentists did wouldn’t last and the image did nothing to help my general preteen nerdiness.

Hiding tooth

Hiding tooth

Or perhaps, my lack of bike skills come from my lack of balance issues which might be early traces of MS?  Except neuro #1 also said my clumsiness had nothing to do with MS even as I was accidentally walking into a wall during my balance test.

Anyway, the morning after my bike dream I woke up hurting all over as if I really had tried to bike 60 miles in one day!

How does THAT happen?

My thighs hurt.

My butt hurt.

My feet hurt.

My arms hurt.

Even my hands hurt.

Everything hurt as if I had gone on an extensive bike trip.

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I have memory issues too and couldn’t remember everything I had done the day before but I’m pretty sure pedaling away wasn’t part of it.

I don’t even have a bike.  There is a cute girl’s bike with a kid’s helmet in the community storage area of my building. Did I take that out for a spin and forget?  But I checked.  The flowery pink bike still had the same dust on it it’s had since I moved in.

So what’s going on?  Has my brain and my sleeping brain decided to conspire to make me crazy?

Has my imagination gone off the walls to make my body crazy?

Am I actually crazy?

Oh wait, I have multiple sclerosis.

Of course I’m crazy!!!

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No Summer Lovin

An MS dirge

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                                                  Summer lovin, had me a blast

(NOT!  Unless it was a nice big blast of cool air from my A/C)

Summer lovin, happened so fast

(Don’t I wish!   These days are dragging already and July’s not even here yet)

….Tell me more, tell me more

Well, since you asked….

(Italicized words are lyrics from “Summer Nights” from the musical Grease.)

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Vitamin D sparkling directly from the sun is supposed to do wonders for people living with MS.

(There’s a reason orange is the official MS color.  Well, that reason and the fact that all the other cool colors were taken by other important causes.)

Despite this, summer and I are not friends.

The fact that I don’t like summer (and really, really don’t like spring because it’s a long drawn out time where the rest of the world is getting ready for summer,) is unpopular.  For most people, July and August are their favorite months of the year.

Please allow me to state my case on why I disagree.

First of all, summer is hot. Only in the insanity that is life with a chronic illness would something that is ultimately good for you, (ie natural vitamin D,) also make you feel miserable.  And heat does make me miserable my friends, trust me.

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If you don’t believe me, ask the cute UPS driver who remarked what a nice afternoon it was when he dropped off my monthly meds.  My vicious reply so frightened him he hasn’t been back in days!

Of course, he’s not due back until next week but still, I was pretty scary that 78 degree day when he stopped by.

Then there are the bugs.  I try to stay out of their way, “you stay out of my house and I’ll stay inside and let you wreak havoc on my yard.”

But they refuse to cooperate and it’s hideous.

Earlier this month I went to a graduation party where everything was covered by these furry, disgusting caterpillars. I guess this is a prevalent year for them and we only have to wait for a bit and then these horrifically gross creatures will turn into gypsy moths- oh the joy.

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Not long after that I went to remove the change in my pocket and I felt something squishy.  I pulled my hand out and saw that the fingernail of my middle finger had impaled a small green bug that had managed to squeeze his way into my pocket.  The head part of it’s body was on one side of my fingernail and the rest of him on the other.  I’m still cringing about that little foray into the blissful days of summer.

And then there are the mornings where we should delight in waking up to cool breezes from windows left open all night.  That MIGHT be lovely except that this is also the time of year that people get yard work done. But, they also want to enjoy the beach and so the yard work must be done super early.

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Hence it was that the lovely sunny morning turned into a headache and then a body ache of ultimate proportions.  It was 6:45AM when my neighbor’s landscaping crew arrived.  Right outside my window one guy started the mower and the other guy started the weed wacker.

(Weed wacker would be a funny name if it’s screeching noise wasn’t so dreadfully painful to my super sensitive ears.)

Both guys had headphones.  I did not and the motor sounds pierced directly to my brain.

When the landscapers woke me up it was the middle of the night still. Due to my bladder issues I had only gotten five of my needed 10-12 hours of sleep and the day was expected to be a busy one.   I closed the window and covered my head with a pillow.  Right away it got hot and added additional misery. ID-100224548

I thought of calling the police as there must be an ordinance against that type of work so early but I worried about being THAT neighbor.  You know the one-Mrs. Kravitz from Bewitched or Mr. Roper from Three’s Company.  Or even Millie from my own childhood neighborhood; the cranky lady who kept all of our balls and Frisbees if they landed in her yard.

Of course I keep ear plugs for times of travel as airplane noise is also painful.  And of course I was out of them.  I tried cotton balls but they didn’t work.

The best solution was a brilliant one.  Turn on my A/C and that steady sound will help drown out the horrific racket outside as well as cool me off.  But since my head had already been affected so badly, I didn’t think up that idea until twenty minutes after the landscapers had finally stopped, over an hour later.

And just like that, my summer day sucked and was complete with pain in the brain, no thinking skills to speak of and just over all extreme fatigue-riddled, summer induced grouchiness.ID-100174457

All of the above just reinforces my dislike of the season. And it bothers me as I remember how much I enjoyed summers past.  It used to be that I could function on only a few hours of sleep, hit the beach, work at night, go out drinking with my friends and repeat it all the next day.

I miss that.

I miss the days when I wouldn’t dream of missing fireworks- bright colors in the sky with explosive sounds, cool!  Now I could care less.   And that just doesn’t feel so good.

Yes my friends, only a condition like multiple sclerosis can turn a fun song from a popular, campy musical into a ditty of misery.

Sure I could lament how the bad things of summer have started to beat me up in recent years and that is true.   But what I’m really struggling with is the mourning of fabulous summers past.

Even while I want to skip the fun invites I don’t want to skip them.  I feel guilty for skipping them, and get mad at myself over and over again.

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It’s a vicious cycle.

And so, with all things multiple sclerosis, I try to balance.

Maybe I’ll skip some invites but take part in others.

Maybe I’ll get extra strength bug spray and venture out once in a while.

I do live near lots of beaches- maybe I’ll go to one and cool off by jumping into the ocean, even if it means that is all I do that day.

I’ll weather (get it, weather,) these months as best as I can even if I do enjoy changing the lyrics to songs about summer and get irritable every once in a while.

Seems like that’s what MS is for….

But I’m definitely getting noise reduction ear muffs!

Happy Independence Day my friends! 

May you have a bug free, fun filled holiday!

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H2O a Go Go

Multiple Sclerosis advice

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Yes friends, this is a repeat. But my brain has been a little slow lately.  And since this is one of my personal favorites, here you go….

You may think today’s blog is another one that has me whining about my obnoxious bladder.

Well, it’s not.

Although, to paraphrase my sister Laurie, “my bladder issues do still piss me off!”

When you tell people you have a chronic illness you find yourself on the receiving end of a ton of unsolicited advice. Most of that advice comes from well meaning people.  Because they are well meaning, the polite you grins and bears it even when it’s useless, clueless and ridiculous.

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“Just tell yourself, ‘I won’t get stressed, I won’t get stressed…’”

“Breathe…”

“You need to get more sleep.  Oh, you got nine and a half hours?  You must be sleeping too much…”

“You may not have MS, it could just be an allergy…”

The thing is, sometimes you may actually get something helpful out of the advice so it’s worth listening too.  (Yes, that advice could be construed as unsolicited advice directly from me.)

Imagine my shock when years after someone told me I should eat bee pollen, I discovered that bees are actually helpful and if we don’t take better care of them, they are going to go away and then the world could end.

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As someone who has written a book about multiple sclerosis that I am desperately trying to sell to the masses, (MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis in case you’ve missed it the 10, 000 times I have mentioned it before-more unsolicted advice-buy, buy, buy…) I am even more open to advice.  I travel my area talking about my book and people want to tell me things that they have heard might possibly be helpful.  And again, that is a great thing.  I appreciate it, I really do.

But every once in a while, not so much.

Please allow me to briefly digress. I swear there will be a point to this digression; I think.

I am very proud that after many people suggested that maybe I didn’t have MS but actually had aspartame poisoning, I looked into it and discovered that they were right.  Well, not really.

My excellent neurologist says I still have MS and I believe him.  But I looked up aspartame and discovered it really is bad for you and sure wasn’t helping things.  I switched from artificial sweetener to Truvia, an expensive alternate, and completely gave up my beloved fountain diet cokes in favor of water.

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I drink water all the time now.  Plain water; no enhanced sugary flavors.  I tried diet coke again once and didn’t even like it anymore.  I thought I was doing great.

At one speaking event I foolishly forgot to pick up some bottled water. A friend offered to get me some and came back with SmartWater which I hadn’t seen before but thought would be great as maybe it would help me be smart.

After the presentations by many authors, a woman to approached me.  She asked if she could tell me something and of course, I agreed, hoping she was going to tell me that my book looked amazing and she couldn’t wait to buy it.  Instead she informed me that the SmartWater I was drinking really wasn’t smart at all.  I was quick to appease.

“Oh really, I’ve never drunk it before.  My friend got it.  Is it filled with sugary additives or something?”

“Oh, I don’t know,” she said.

Hmmmm……

It was a chilly day in May and she was wearing socks with sandals.  I know it’s not right to stereotype but my first thought was the bottle; she must be Earthy Crunchy green and worried about the planet.

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“Oh, don’t worry, I recycle- I won’t throw away the bottle.”

That wasn’t a lie.  I really do recycle but turns out that isn’t enough anymore.  Don’t even get me started about the dangers of water bottles, that’s a whole other blog post.

“That’s not it either,” she replied.

Turns out, what she was referring too was the alkaline content in bottled water and how it does something really bad that could be making my MS worse or does something really good that could make my MS go away.  I couldn’t figure out which.  The only thing I know about alkaline has to do with batteries.

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Maybe I should ask the Energizer bunny what this woman was talking about.

Then she mentioned something about acid levels, which was really upsetting as I’ve never done acid in my life-not even in college.

Here I thought I was being so healthy!!!!   No diet coke for me!  No juice at this event-too much sugar.  No milk- now some say milk is bad.  No lemonade or even iced tea.  No beer or margaritas either.    No chemicals, poisons, GMO’s, alcohol or aspartame.  I was drinking what I thought I was supposed to be drinking, what everyone told me I was supposed to be drinking.ID-100207125

This woman then went on a 20 minute scientific diatribe while I stood there dumbly watching the custodian fold the chairs and empty the sods cups.    I couldn’t figure out science even before MS attacked my brain. I heard the word alkaline a lot and acidic.  And inflammation, that one was kind of familiar.  But I had absolutely no clue what she was talking about.

I’m all about good advice and being polite though so I stopped trying to figure her theory out and just figured when she was done, she would tell me what I should do stop the water epidemic.  She finally stopped talking and so I asked her what I should do? How do I solve this problem of bottled water that I didn’t know I had?

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I was eager for an answer and good advice that would circumvent me going back to school to take a science class.  I didn’t even know what kind of science this was.   Biology?  Chemistry?  Earth Science?  Yes, water lives on the earth so it must be an Earth Sciences class I should take to sort this out.

Her response to my question of what should I do now that I know bottled water can be bad, was straightforward.

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“Oh, I don’t know.”

What??  See friends, I swear this is all true; you can’t make this stuff up with or without an MS brain.

I pressed her a little and she told me that she had just moved to the area from California which had the best water in the world and where she knew which bottled water was safe to drink.  Now that she was in MA, she had no idea.

I pressed her more and she then told me her best advice was to buy litmus strips (what?) and then take them to all of the Whole Foods, Trader Joe’s and health food stores in my area where I should buy up all the bottled water they had and then bring it home to test each of them with the Litmus strips and then only drink the bottled water that tested well.

For one month.

Then, as companies can change their manufacturing processes and their water sources, I should repeat this test every month for infinity to make sure I was constantly getting the best water.ID-100307529

It was at this point that I began to peek around the corner of the empty room looking for the Candid Camera dude.  He never showed up.

I was more confused than ever.

About the only thing that seemed clear after the woman and I finally said goodbye was that there must have been something in her water.

There just had to be…ID-10036921

What is the craziest advice you have ever gotten?

 

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Shower Time

A new multiple sclerosis skill

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People not living with multiple sclerosis or another chronic illness can’t possibly understand the fatigue we talk about unless they have actually spent hours trying to find the energy to take a shower.

It doesn’t matter if my achy body slept in til 11 or I had to get up at 7 for Mass.  (What is up with 8:30 Mass?  My Christian friends might disagree with me but my reading of scriptures says that worship is not appropriate until the worshiper is wide awake, usually after 10:30.)

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The plan for this particular day included finishing (and actually starting too) a writing project I had known about and been thinking about for months.  It was due at midnight. Showering helps me think through ideas but getting into the shower has become a lot of work lately.

It shouldn’t be.  Especially on this day.  This was to be a quick shower. I wasn’t going anywhere besides my desk.  I didn’t need to wash, condition or style my hair.  I didn’t need makeup.  All I needed today was a quick rinse, soap, rinse again, and dry.  Easy.

I probably didn’t even need a shower except that for me, my secondary illness is germaphobia so going without is out of the question.

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I drank my tea.

I ate my breakfast.

I answered my emails.

I sorted through my daily meds.

I made my bed.

I posted a funny baby video to Facebook.

I watched a DIY video on how to make a cheap bed for my dog which was pretty silly since I don’t have a dog.

I thought about my writing project.

I thought about why taking a shower is so exhausting.

I started this blog.ID-100165569

What makes a shower so exhausting?  Is it the standing? The water temperature? The slip and fall concern?  Is it the multiple steps even if the multiple steps are so simple we should be able to do them without even thinking about them?

I really didn’t know but I had to figure it out.  I had things to do and they started after I finished my shower.

I thought that music might help through the getting clean process and so I turned on the Music Choice channel.  I normally go for classic rock but today the 80’s felt like better shower music.

The channel was playing Too Shy by Kajagoogoo.  The music notes said that the lead singer left the band to pursue a solo career in the 80’s.

“Well how did that work out for you Limahl?” I snickered.

Before I knew it, I was Googling Limahl.  Turns out his solo career went fine.  But he was definitely cuter in the 80’s.

me capturing the 80s

me capturing the 80’s

Then again, weren’t we all?

I  v— e—r— y  s—l—o—w—l—y headed to my bathroom.  It was shower time.  Since I had 80’s music on shower time turned into Hammer time which made me think of MC Hammer.  Thus, that was the song in my head when I finally got into the shower, over three hours after waking up initially.

Taking a shower should be automatic and NOT a big deal.  It is such a minor part of my day that I don’t even write it down on my “to do” list; and I write EVERYTHING down on my “to do” list.ID-10094176

Post a funny baby pic to Facebook– scratch that right off.  Done and done!

In the years before MS symptoms started rearing their ugly and obnoxious head, taking a shower was how I kick started my day, not something I had to work up too. But multiple sclerosis can change many things both huge and insignificant.

Still, I refuse to let MS completely beat me up. Whenever possible, I go for the positive.

Now dressed and back at my computer and finally starting my writing project a thought occurred to me.  Yes, it was ridiculous how long it took me to do such a routine task.  But look at all the things I accomplished in the meantime.

Those cute baby videos don’t post themselves you know!

Come to think of it, I was pretty impressed at the things I had done while I procrastinated the soap and water part of my day.ID-100127363Back in the old days I didn’t have such procrastination skills. Procrastinating meant zoning out in front of the tv while some sitcom I had seen hundreds of times broadcast canned laughter.  I would literally be a useless clump of procrastination nothingness.

Now look at me!  It takes quite the skill to be able to procrastinate at this level.  It is not for the weak or faint of heart.

Neither is MS.

I decided that this skill I’ve developed since my diagnosis is nothing to disregard.  I’ve entered into an elite society of professional procrastinators and I couldn’t be prouder.

I don’t want to pat myself on the back too much but MC Hammer’s words lingered in my brain.

Hey you regular, amateur procrastinators- “You Can’t Touch This!”ID-10056127

March is MS Awareness Month and we only have a couple of weeks left!  If you like your awareness brought to you with a giggle then please check out my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.  You will definitely giggle.  It says you in the title!

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