Tag Archives: race to erase ms

Pink and Orange Creatures

Same MS symptom, new MS monster

When you were a kid, did you have a monster that lived under your bed?

Being a child growing up by the seashore I wasn’t capable of worrying about just any old monster under my bed. My monster had a twist. And he didn’t live under my bed. He swam deep, deep below it.

See, my monster was a huge, scary great white shark. And he lived under my house, not under my bed.

No, my house wasn’t built on a pier.

In my childhood nightmares the shark was so powerful that he would come up from the ocean in the earth’s core and break through my basement and my bedroom floor just to bite my arm off if it happened to hanging over the bed.

It didn’t occur to me that that was quite a journey for a shark to make just to get my tasty arm. Or that if the shark was strong enough to break through cement and wood, my mattress would probably not keep him from getting all of me.

Yes, I know, this was a ridiculous childhood concern. But cut me some slack; it was the 70’s and Jaws had just been released. AND, they filmed Jaws not too far from where we lived so it could happen.

It didn’t help that my sisters just loved to hum the Jaws theme as we drifted off to sleep.

Maybe that is why I am so tired all the time now- my childhood was spent scrunching into a tight, safe little ball all night to protect myself from sharks and thus, I didn’t get much sleep back then. It is certainly the reason why I still never hang anything over the side of my bed. You shouldn’t either- you just never know…

I started thinking about this recently as I realized we have a tendency in life to make things that might frighten us, cute. If something is cute and cuddly, it can’t be dangerous.

Like Sesame Street– what was that about? A huge yellow bird is freaking scary! I know because Big Bird came to my little sister’s birthday party once and he scared the “you know what” out of one of her guests. No need to be graphic. Let’s just say diapers were involved.

And then there was ET. Oh no, no one is afraid of ET. He’s so ugly he’s cute, so he can’t be that bad. Hmmmm, kind of how my sisters described me as a baby.

scan0001

But when you really think about, an alien is still a monster anyway you look at it.

My new favorite commercial on TV is for Myrbetriq. If you have not seen it is worth it to pull up YouTube and check it out.

It features this woman being lead around by a little pink monster. He grabs her hand and pulls her off a bus when he sees a bathroom sign. He does the same thing when she is in line for a movie. Turns out, this adorable little creature is supposed to be her bladder.

The audio refers to “your bladder is calling the shots.” But the image makes her bladder out to be just a little needy, like a child needing to go, go, go all the time. Later in the 60 second commercial the little bladder monster makes faces as if he feels guilty for being so difficult.

The woman who owns him takes him to the doctor and he seems to be listening intently as the doctor tells the woman there is medicine that can help him control himself better.

Then the woman and the little pink monster, (I looked it up- the little guy does look like an actual bladder except with two big eye balls. I really hope my bladder doesn’t have eyes,) go to a concert in the park and sit happily relaxed with no worries.

Ridiculous, I thought! I don’t care what kind of medication the woman is taking she is going to have to go at least once during the concert. And there are probably only porta pottys which is a whole other kind of terror.

I paid very close attention to this commercial since my bladder and I have issues. And for several weeks I tried to think of my bladder as just a cute little needy monster. I swear I really did. But it didn’t work.

My bladder issues are not cute. And they are scary. And more than that, they piss me off. And like my childhood shark terrors, my bladder keeps me up at night. Making it cute did not help at all!

It made me wonder why we as a society do this. Why turn something horrible and frightening into something funny to try to pretend it doesn’t bug us? What if someone did that with multiple sclerosis?

And then I remember that I actually did! On the cover of my book about living with MS I turned MS into a monster. A “so ugly he’s kind of cute monster!”
I even held a contest to give him a name- Myron, the myelin munching monster (thank you Kym.) And then I put him at the start of every chapter. What was I thinking?

The thing is, since he’s not going anywhere he might as well be funny to look at. If I have to deal with him, I might as well try to be less terrified. And maybe if I give him an orange color since orange is the color of hope for people with MS, he’ll weaken just a little bit.

cover-half

And that right there is when I realized that if I make him, my crappy, miserable MS, into a monster, I give myself just a little bit of control over him. He’s still scary. And he definitely still pisses me off. But at least he’s a little bit less hideous to look at…

And speaking of Myron, the myelin munching monster, the MSstation Book Club website has named his story, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis as the May book of the month! Check it out here-

MS Station Book Club

And if you haven’t picked up a copy yet, why not buy it through my publisher’s website where 50% of the proceeds go to the Nancy Davis Foundation’s Race to Erase MS Orange campaign. Maybe your purchase will be the one that funds the research that leads the experts in the direction of a cure!

At the very least, you’ll get a chuckle or two!

Please excuse me now; my bladder and I are headed to the bathroom. We have some obnoxious issues to take care of…

 

Getting Dizzy With It

The spin in multiple sclerosis

 

When I was a teenager I worked at a card store. I still remember the best card I ever stocked. It was in the “Thinking of You” section and the front cover had a drawing of a person who was shaded in blue, sitting on a chair. The front read “Don’t think I am just sitting here holding my breath until I see you again.” When you opened the card the person had fallen off the chair and the card now read “Sometimes I get dizzy and fall over.”

I loved that card and have always remembered it even though I have never seen it again. To this day I wish I had bought the whole supply as there are a ton of guys in my past life I could have sent it too.

OK, maybe a ton is not the right wording but there were a few.

This guy below definitely would have gotten one.

pirate0001

Recently the card took on a new spin, spin being the operative word. Lately I have been getting dizzy spells. Just when I think I’ve got multiple sclerosis figured out, it adds a new symptom to my already symptoms filled life. Sigh……

Like everything else MS wise, for a while the dizzy spells came and went. Since MS also provides me with random memory issues, I would forget about them when they weren’t happening.

Just so I wouldn’t think they had gone away for good, they chose to come back with a vengeance and stick around permanently. And it was my own fault for it was my daring to try to have a g-rated good time that brought them back.

 

Around the time I was working for the card shop, a carnival would come yearly to my little town and I would spend my earnings on some of the rides. As far as I remember, I don’t think I would have sent the dizzy card to any of the carnies I met but how can one with MS really keep track?

The point is, while a carnival is small and usually doesn’t have room for a major roller coaster, I did alright with the tamer rides. My favorite was the Tilt-A-Whirl. My friends and I could go on that over and over, especially if the guy who was running it was cute.

I also had fun with the pendulum type rides. As an adult I managed to visit more involved amusement parks and upped my riding experience a bit. I didn’t do so well with crazy roller coasters but managed Space Mountain and Thunder Mountain ok. No boring Tea Cups for me, thank you. I even took on the Tower of Terror but once was enough.

 

Forgetting my dizzy spells recently I decided to take one of my nephews and his oldest son to a kid friendly mini- amusement park. The child was under three so I was sure I would be fine to take him on some of the kiddie rides if he got scared.

Apparently MS had other plans.

I took him on a child’s version of the Tilt-A-Whirl ready for some fun. He was apprehensive at first but I convinced him it would be a blast. I lifted him up onto the two foot high platform to pick out his car and then climbed up myself. We strapped ourselves in and waited with excitement for the ride to begin. Here’s a picture. Keep in mind that the camera adds 60 lbs.

12610014

Then the party started. Only seconds into the fun I realized I wasn’t having any fun at all. The ride was spinning as rides are supposed to do, but my head was now spinning in the opposite direction. I became nauseous and had this terrible vision of throwing up on the child which would traumatize him for life.

I must have started to turn blue/green because the 16 year old girl running the ride stopped it for me, much to the irritation of the other toddlers along for the ah, well ride. I tried to climb out of the little car but was as wobbly as a Weeble. Weebles wobble but they aren’t supposed to fall down. I wasn’t so sure.

 

I did my best to make it off the platform and onto the ground without any further humiliation. Since children under three weren’t allowed to ride alone, the teenage killer ride operator next handed me my great nephew who, being great, was eager to hit the next fun thing and didn’t complain too much. But it was all I could do to pass him off to his dad before I fell onto a bench to recoup.

When did this happen? When did a minor little motion on a kiddie ride become too much for me? This was ridiculous. I used to ride the Tilt-A-Whirl ten times a night just to flirt with the guy running the thing!

What brought on this terrible motion sickness?

Ah yes, how could I forget? It was yet another result of the no fun, no spin, no joy, joy ride that is multiple sclerosis.

And since I dared to try a ride with a little more excitement, the unpleasant dizziness decided to stick around for a while. While I haven’t actually fainted yet, I do tend to fall over sometimes. I could really use that old greeting card now.

12610018

Lucky for me, my great nephew was resilient. He was happy to go back to the stationary car that he could drive himself that luckily was near a bench that I could sit on and watch him ride away.

Then we got ice cream.

And we were both happy.

The moral of this particular blog post? When MS hurls another bummer of a symptom at you, briefly lament the passing of another piece of the old you and then, like a child, find another way to have fun.

Then go get ice cream….

 

 

Have you had a chance to pick up MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis? The book that Kirkus Reviews calls-

“A warm, unique memoir about coping with disease.” ——Kirkus Reviews

And that Richard M. Cohen, NY Times best-selling author of Blindsided and Strong at the Broken Places says,

“combines defiance with humor, the secret weapon of the sick.”                             Richard M. Cohen

Find MS Madness! online or request it at your local bookstore.

Or, purchase in the month of April through the link below to donate 50% of the proceeds from the sale of the book to the Race to Erase MS campaign through the Nancy Davis Foundation.

MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis

cover-half

 

Press One for Dumb

MS Stupid is as MS Stupid Does

For the record, I’m not saying that people with brain fog or other cognitively limiting chronic illnesses like multiple sclerosis are dumb. That would be wrong.

And it would get people really, really mad at me just as I am trying to sell them a book or two-too dumb a move even for me!

What I AM saying is that too often, MS makes ME dumb, (ie, stupid, slow, dim-witted, ignorant, simple minded, etc).

True, I did many a dumb thing before the onset of MS. But since no one can really know when the onset of MS was, that is kind of a dumb statement.

duhhh0001

The point is, the dumb things I have done since then are immeasurable.

Just the other day I stressed myself out trying to jam my mug of tea into the toaster oven. It would not fit. I kept trying. It didn’t make sense. I re-heat my tea all the time; it had to fit.

I had brewed a whole other cup before it occurred to me that I usually re-heated my tea in the microwave. I tried to fit the mug into that and of course, it fit nicely.

The two machines aren’t even near each other.  Are they even machines?

Last summer a friend took me and her family out to dinner. She asked me to make the reservations. The party was made up of me, my friend Sam, Bunny, Jack and Lexi. I made the reservations for the 6 of us.

There was an extra chair and place setting at the table. I couldn’t figure out why- me, Sam, Bunny, Jack and Lexi-six.

Eventually the waitress removed the extra plates and silverware but I was still confused. Clearly the waitress didn’t know how to count. (If this sounds familiar to you it might be because I have whined about this incident before and so no, you are not dumb.)

My mom recently bought a Jitterbug phone, a phone specifically designed for older people who may not have owned a cell phone in the past- in other words, super easy. Guess who had a hard time setting it up for her?

Oh eventually we got through it. But it took both of us reading the instructions repeatedly and at least four calls to the company to do it. And while I sat on hold with them, all my brain could come up with is “jitterbug, boom, boom, jitterbug) the opening bars to a popular 80’s song of my youth.

Smart phone indeed!

The fact that MS makes me dumb is further complicated by all of the paperwork that comes from living with a chronic illness. Recently I had to go to three different offices two times each (one office three times,) just to change my address. Apparently I messed up the forms on the first go around.

As I sat in one particular office my frustration grew as large as the giant high tech TV screen in front of me. The screen announced all the different options for people who have trouble with paperwork.

One by one different segments would flash that said say if you are Spanish and need an interpreter to help you with the paperwork, press two when dialing the main number. If you are French and need an interpreter to help you with the paperwork, press three. If you are Vietnamese and need an interpreter to help you with the paperwork, press four. If you are German and need an interpreter to help you with the paperwork, press five.

Please don’t think that this blog is a comment on closing our borders, as it is definitely not. My own grandparents took a boat across the Atlantic to live on our great shores and more power to them for that.

Nor is it a commentary on illegal aliens as I am way too dumb to try to sort out that issue.

What I am asking is where was the screen that says if you are too dumb to handle all of this intense paperwork yourself, press one when dialing the main number. Or even better, where was the screen that says if you used to be smart and are now dumb but still look normal and smart, press one.

Thing is, this is another frustration of living with an invisible illness. I look normal. My work history and resume shows that I was normal at one time.

When I try to explain that I am now dumb, I am too dumb to explain it well. That is when people decide that I must be lazy. Why can’t they understand that cognitive difficulties from MS can make me dumb, not lazy?

Seems kind of stupid to me….

Recently I had even more paperwork to fill out and have since discovered a wonderful nonprofit organization that can help with some types of tricky paperwork for the slow folks like me. Those non-profits rock!

A wonderful woman filled out the forms and I was super grateful. But then I got a letter from the agency we were writing to and it said the paperwork was filled out wrong and since it was, I would now have to jump through even more horrible paperwork hoops to get a response from them.

But how could this be? A really smart person had filled it out for me. And she was not a person who just looked smart, she really was. Her brain functioned at total capacity.

I called her to inquire. She made some calls and it turned out that a bazillion years before, when I had stupidly tried to fill the paperwork out myself, I did it wrong. So even though the current forms were done exactly right, I now had to try to correct previous mistakes that no longer applied to anything, including the latest “done right” paperwork!

And this had to be done immediately with the nice wise lady walking me through it over the phone very slowly and repeating the directions several times. I can only imagine how that paperwork turns out.

I know there are some people in the world, who think that people with disabilities are scamming the system, making excuses or lying about their conditions. After all, these supposedly wise folks believe, if you look normal you must be normal and are just faking something.

Well, I would like to state that people like me are absolutely not doing this. Besides the major right and wrong aspect, we don’t have the capacity to pull off any of these scams.

We are way too……, well, you know.

cover-half

Want to fight your MS cognitive difficulties by doing a super smart thing?

Want to purchase my book, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis AND  donate to an awesome cause?

Purchase through this link below by the end of March and 50% of the proceeds from the sale will go directly to the Nancy Davis Foundation Race to Erase MS campaign!

Race to Erase MS!

 

Making it up as I Go

Multiple Sclerosis attempts to pretty up a bit

I am terrified of my foundation. Ahhh, dear sympathetic readers, I must be psychic as I can hear your concern across the internet.

“Yvonne must have fallen again and she is worried about her safety- that is what she means by foundation. She needs a more stable floor.”

So kind of you all but no, that is not the foundation I mean.

“Hmmm… Yvonne must be facing a moral dilemma, struggling with some principle between right and wrong. It must be serious if she’s actually terrified. I wonder what that foundation is.”

Sorry friends, that is wrong too. My actual fear is far shallower.

The foundation I am talking about is the new makeup I just bought. I have no idea what to do with it and the very tired me is overwhelmed with the thought of trying it out.

 

See, it’s been years since I’ve worn makeup with any regularity. Four to be exact, stopping a few months after MS came into my life. Basically, I was just too fatigued to care.

When your energy level is already at the bottom of the barrel, putting makeup on is just too exhausting. Taking it off again in the evening is near debilitating.

If you think I’m exaggerating then you either a. do not have MS, b. are a non cross dressing male, c. are a compulsive liar or d. are taking some really good meds.

Add to the fatigue my clumsiness and tingling fingers and cosmetics easily became one of the early casualties of my MS life. And folks wonder why I’m single.

Back in the day, I wouldn’t dream of stepping outside my front door without a little makeup on. But back then it also didn’t take much. A little blush, a little mascara and eye liner, maybe some lip gloss and out the door I would go.

 

Since I was young (or at least much, much younger) and a friend had told me I had beautiful skin, I never bothered with foundation. It seemed a waste to me and too often I would see people wearing it with crazy smudges all over their face and clothes and looking like their faces had melted.

No, foundation was not for me.

Part of being a writer is going off to various places to sell your books. It became apparent that maybe I should give makeup a try again. Not for the beauty aspect per se, as my book is about a super tired MSer so why not look like a super tired MSer when I talk about it?

The concern was the pictures that get taken. Those pictures can stick around forever! Bad enough that the camera already adds forty pounds!

And so I decided I should put on makeup the way I used to four years ago. Problem is, I guess I’ve aged a lot in those four years. Even with makeup, I still look like a zombie. And not just any old zombie, but a washed out fatigued zombie at that.

 

This realization combined with my “I can’t sleep because of my bladder so I will watch late night miracle beauty infomercials” status and combined with my “CVS messing up my online $3 rewards and giving me $5 rewards and a 20% off coupon to apologize-I love CVS” status.

So now I had pharmacy money to burn, makeup on my mind and late night commercials telling me how important a base coat was. I went to the store and stood forever in the cosmetics aisle.

So much to choose from just in foundation alone! Powder or cream? What skin tone? My skin tone is MS fatigued winter pale but they didn’t have that one. They had ivory and classic ivory. I like ivory soap but I wasn’t sure if that had anything to do with the choices.

Add coupons, sale prices and other customers trying to get around me to the mix and I panicked. I grabbed something and got out of the store. I’m not even sure if what I got is foundation.

 

It has color and is supposed to go on my face, I think, but it has two names-Age Rewind and The Lifter. What does it lift? Is it meant to lift the floor, as in that type of foundation? But then what was it doing in the makeup aisle?

I brought it home and now I don’t know what to do with it. I know most people would say I should try it out, practice a bit before I actually wear it in public. I tried that. I put some on the back of my hand and suddenly my hand looked perfect-blemish free.

Which was totally depressing as I didn’t realize that my hand had blemishes in the first place…

And now I am stuck. Testing my hand and then washing all that base coat off of the back of my hand has worn me out. I can’t imagine practicing with my whole face.

What about my neck? Do I use the stuff to hide the blemishes on my neck? What about my hands again? Won’t it look weird to have a flawless face and neck and then wrinkly blemish filled hands?

 

Oh how I wish I still had my Barbie head doll. You know the one where there was no body, just a huge Barbie head that you could put make up on and style her hair. I was remembering this toy of my childhood and stressing over my new purchase when somewhere through the MS brain fog came a reminder.

My friend is having a Mary Kay party this weekend! Mary Kay is the makeup company where they tell you all the amazing things you can do with their cosmetics and make you all gorgeous so you’ll spend a ton of money.

I don’t have a ton of money to spend and already have makeup. But if I bring lots and lots of notepaper I can get some good foundation pointers.

And maybe some hand cream….

 

cover-half

Not too late to purchase your copy of MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis and donate to an awesome cause! Purchase through this link below and 50% of the proceeds of the sale go to Race to Erase MS!

Race to Erase MS Online Store

 

Lots and Lots of March Stuff

Happy first week of March everyone!

MS-Badge
Healthline

So much to share with you friends!

First up, and in no particular order, other than the order that I finally learned how to post this badge on my blog and am afraid to move it around for fear of losing it, order-  my blog was nominated a top MS Blog by Healthline!!!

I didn’t even know I was nominated!

Thank you to whoever nominated and voted for my blog!

And to be honest, I didn’t know much about this website either.  So now I’ve checked it out, love it, and have added it to my website.   Talk about MS awareness!

 

Speaking of which, Happy National MS Awareness Month!

Next up, have you gotten a chance to order my book, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis yet?  If you would like too and would also like to help out an amazing organization, let me tell of an exciting opportunity.

cover-half

My book is listed in the Race to Erase MS online store and if you purchase through their store during the month of March,  50% of the proceeds go to the Race to Erase MS campaign.

I’m so excited to be working with this amazing organization!   Here is the link if you would like to take a look-

Race to Erase MS Online Store/MS Madness!

So the first week of March was filled with bad news, one fall-stupid bath tub, Ash Wednesday, my first book signing, good news, lots more good news-see above and many, many hours of  pondering all of the above.  Thus, I unfortunately do not have a new blog for you today.

 

BUT, as Ash Wednesday marks the start of Lent, I thought I would repeat last year’s Lenten blog.    I promise a new post next Friday.

Have a great week friends!

 

When Multiple Sclerosis and Lent Collide

Adding God to the MS balance beam

Due to Lent, this blog has a spiritual tint to it. I hope though, that even my non-believing friends will enjoy it from the aspect of how it incorporates another one of the elements of living with multiple sclerosis.

And really, how can you not believe in a higher power? I mean, God is freaking awesome! The sun, the moon, the Earth, the oceans and on the eighth day he created the Rolling Stones! How can you not love the creator of all that!!

For me, Jesus is my God. Only someone that cool would be capable of creating Keith Richards and keeping him around past his over ten lives thus far. But no matter what you believe dear readers, I wish you great health and many, many laughs always….

 

I think I messed up the Lent thing. As a Christian, I was excited about the approach of this time of year. We use this time to grow closer to God with prayer, almsgiving (does trying to make people laugh count as almsgiving?) and fasting.

My goal was to take advantage of this opportunity. I saved change to put into the little cardboard box that was our church’s mission project to support a local mission. I even put in quarters. When it was time to turn the box in and it seemed a little light, I even took some change out of another jar where I had been saving for my Lions Club.

Speaking of my Lion’s Club, I also fed the crew of a local Habitat for Humanity project in our club’s name. I didn’t have time to get fellow Lion’s to help me but that was ok as it was supposed to be a small crew.

The numbers increased however and thus it was that my fatigued MS self was slapping together ham and cheese on a windy morning for hungry construction workers. And, unfortunately, as far as I could tell, not a one of them was single! Not that that had anything to do with why I was there, it was about almsgiving of course.

 

When two fellow Lions asked my tired self to help them clean the God given beach, I did put a stop to that. Really, how much almsgiving can you do???

For the prayer portion of Lent, I obtained many books about Jesus and set to grow in my relationship with Him. It worked; I have enjoyed a lot of what I read.

But here is where MS screwed me up. My brain takes much longer to process information. So, while I was reading all of these great spiritual works, I was taking up a ton of time in my already pretty crowded with exhaustion, day. That left no time for the things I should be doing for my general health.

Suffice to say, what I wound up unintentionally giving up for Lent, was working out with my Wii Fit. Officially, I gave up casual reading for Lent in favor of more involved spiritual material and was planning on curbing my sweet tooth. But before I realized it, I was fasting on getting exercise and I am not sure that counts.

 

With MS there is so much you should do and so little energy to do it in. With Lent, there was so much I wanted to do and only forty days to do it in. Ok, technically, you don’t have to stop the prayer, almsgiving, fasting routine just because Easter arrives, but having a time table sure helps to keep you focused.

That is when I figured out where I went wrong. Focus is the key word.

There are always going to be more things I want to do and more things I have to do and I will always have to walk this MS balance beam of energy supply. Some days I may do it well, other days not so much.

But if I put God first, maybe I won’t have to balance Him with other things. Not even with MS.

 

Maybe Jesus IS the balance beam of energy. With Him first in my world, everything else will fall into place, even my Wii Fit, after it gets over being mad at me. Perhaps I will bring it an Easter basket….

Here is the other thing I learned, as it says in scripture, “it’s never to late to start all over again.”

 

Wait, maybe that isn’t scripture, maybe that’s Steppenwolf. I will have to check my notes. I have also really been into 70’s music lately.

The point is, everyday you just have to give life your best shot. Wait, shot is not the right word. Jesus is all about peace and love, not violence-no shooting…

Ok, let me try a third way. We are humans and as humans we are total screw ups. But screwing up isn’t always bad if we can learn from our mistakes and keep our focus on what is right and what is good for us.

And, no matter how hard you try, you can’t use Lent as an excuse for not exercising!