Category Archives: Uncategorized

MS Travels to Nevada

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Doing something a little different my friends. This blog today is a guest blog by a colleague who wanted to share what the state of Nevada has going on in the way of fighting the MS beast. To be honest, I’d never thought of Nevada as a game player in this particular battle. When I think of Nevada I think of wedding chapels, Elvis impersonators, slot machines and, well, games. Poker to be precise. Turns out, this gaming state has a lot more to offer!

Read further to learn more….

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Las Vegas Events for people with MS

The root cause of Multiple Sclerosis may not be known yet, but know that you’re not alone. As stated on the website’s bio page, over 400,000 people are living with this illness and 200 people are diagnosed every week.

If you or your loved ones are diagnosed with MS, there’s no need to hide from the rest of the world. People suffering from MS need to make the most of their situation and try to live life to the fullest, and most importantly with a smile. Engaging in enjoyable activities is just one of the ways thousands of MS suffers counter the rigors of the illness.

First, there’s the Nevada MS Walk event that encourages people with the disease, as well as their loved ones, to bond on a walk for a worthy cause. This walk changes the world one step at a time by unify everyone in mission to helping find a cure to MS. With every walk, with every dollar raised, we get closer to finding the root and cures for MS.

Additionally, there’s the “Lights, Camera, Take Action on MS” where Southern Nevada service providers attend the event in order to answer the questions of people and at the same time offer help. Last year, actress Madeleine Stowe attended the event, which was graced by over 12,000 Southern Nevadans who were diagnosed with MS, where she told her story about how she took care of her father during the latter stages of his illness. Often she spoke about the funny side of her father and how he made light, and the best of his situation, encouraging others to do the same.

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About 23 years ago, there was no medicine approved for MS suffers. However, now they are about 13 different types of medicine are already available to help patients treat this disorder that makes the immune system eat away the protective covering of the nerves. And it is at events like these where people can find the latest developments regarding medicine and converse with other people who have been affected by MS freely, while finding solace in the fact everyone is steadfast in finding an end to the disease.

While Nevada used to be best known for its noisy and flashy casinos in Las Vegas but thankfully, it is starting to become a place which hosts a more varied entertainment portfolio, including MS-related fundraisers and awareness initiatives. Perhaps it is Nevada’s way of driving more traffic into the city, since its revenues have been largely effected by online gaming providers that not only offer convenient gameplay to their players but also a variety of games that get updated regularly as well as bonus perks for people who buy their credits online. Whatever the reason is for Nevada hosting events that have the potential to change the world, the truth of the matter is that it is doing great work and having a greater benefit than just increasing revenues.

Thank you Nevada!

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FYI for 6/26/15 Post

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Hi friends- 

Due to computer issues I may not be posting a blog this week.   I will be back at blogging as soon as I get this issue resolved.

Enjoy the rest of June my friends…

Yvonne

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Sunny D is Not Just a Drink

A new multiple sclerosis sting

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I’ve been lucky so far on this MS journey, at least when it comes to pain.

There are many different types of pain, manifested in many different ways, to those of us living with multiple sclerosis. How can there not be since MS is basically something no one knows what, attacking our nerve ending which are responsible for all types of sensations?

For me, for the most part, the pain I feel, physical pain I mean, comes in the form of super duper achy aches.  Give me two Aleve and a prescription medication for heartburn since Aleve shreds the heck out of your guts and I’m usually good to go…ID-100326652

That was until just last week.

I wish I could say that everything that happened last weekend was a conscious decision on my part.

I wish I could tell you that I had the natural vitamin D vs. potentially cancerous sun rays discussion going on in my brain.

I wish I could say that when I looked up at the partially cloudy sky I made an educated decision.

I wish I could tell you that I actually thought about MS or pain or my skin or the sun.

But honestly, there was no room for these thoughts on this particular Saturday.

And why should there be?  It was barely spring.  And it was a yard sale.

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Some acquaintances had decided to hold a yard sale right in my own rented backyard.  Being the downsizing cheapskate I believe I am, I asked to join them.  That way I could make some money, get rid of some stuff, and wouldn’t have to even advertise- they already did!

I got up early and carried my boxes outside to join my new friends.  And it was actually fun.  I enjoyed their company and tried not to get too freaked out when their junk sold way better than my junk.

I kept hydrated and smiled and peddled my wares and enjoyed the early May breezes and was generally pleased with how it all went.

I thought $40 (mostly in quarters and crumpled singles) was all I got from the morning.

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The next day I noticed another gift.

It was a wicked sunburn on half of my body.

Not even the good half.

By half my body I mean one bright red arm and one arm still pale as ever.  Way paler than it should be considering the hearty Portuguese stock I come from.

At least my face was spared the half and half look. And by spared I mean that both sides of my nose as well as the tip were sporting the “Rudolph on one foggy Christmas Eve” look.

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But what was even worse than the reindeer games image was the pain.   It was the pain that caused me to notice the sunburn in the first place.

Waking up the morning after the yard sale my right side felt like it was on fire.  I’ve had sunburns before- I grew up on a beach.  But never had I hurt like this.

What was really horrible was that the sharp, spiky pain seemed to radiate from inside my body, likely from the nerve endings themselves.  How did the sun’s powerful rays penetrate through all my fat cells all the way down to the nerves?

My whole right arm felt completely useless and it hurt like a motha… well, let’s just say it hurt a lot.

I had never felt throbbing quite like this before and it wasn’t long before I had something to blame.

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It wasn’t, of course, my fault for not remembering to use sunscreen or for not noticing that what sunscreen I did have had expired five years prior.  No, this was the fault of multiple sclerosis.

Just like climate change, world hunger, communism, capitalism, consumerism and any other “ism” you can think of, my sunburn was now added to the list of things I blame on MS.

Only MS can mess up what was a fun day outside on a somewhat cloudy morning and turn it into a new level of pain and unattractiveness-trust me, the Rudolph look only looks cute on Rudolph.

But even in this unfortunate, new issue, I was fortunate.

While MS sucks and is horrible and does horrible things and causes even more horrible things, sometimes, just sometimes, it calms down for a while too.  Two days later and the hurt was mostly gone and the redness was a little less bright.

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And somehow I actually missed the whole disgusting skin peeling aspect that follows a sun burn.  And so, in this too, I try to be positive.  The worst of this new symptom had passed and lesson learned.

Perhaps I could go on to try to better appreciate the sun this summer.  Especially since now I had $40.

That should be enough to buy some decent sunscreen.

Maybe…

Hope all of you my friends are having a safe and healthy fun start to the summer season!  

To get you through do what I’m going to go- grab some sunscreen, ice water and the nearest AC!


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Keep Using Your “I” Words, Baby!

A Multiple Sclerosis VOCABULARY

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I had three ideas for a new blog this week.  Unfortunately, I also had a very dirty house.  Being a germ-a-phobe, the dirty house won.  

So I’m posting an oldie.  In honor of World MS Day next week, I wanted to post a favorite. (More on World MS Day at the end of this post.)  This blog is such a favorite of mine that I sent it to the editors of Something on our Minds Volume II where it was published.  

I hope you find it helpful my friends……

Some people say that good things come from bad.

Many others say that is crap.

I’m not about to earnestly debate this argument as my brain is just too fatigued to give it much thought.  But I will honestly say that one thing good that arose from my multiple sclerosis diagnosis was the increase of helpful vocabulary words beginning with the letter “I.”ID-10058081

Before MS, if someone were to ask me to quickly name a word that starts with the letter “I,” I would have to think for a few seconds.  Then I would say “Indian” which is no longer politically correct, and since Native American doesn’t start with the letter “I,” would be wrong anyway.

If I was given more time I might come up with igloo or iceberg, maybe iguana, but I would really have to think for a bit.  Pretty sad since I was an English major in college.ID-10049794But since MS, I know many words that begin with the letter “I” and some are actually helpful in my MS world.

I don’t mean “injection” which is technically helpful in a healthy way but is definitely not helpful in a real life way.

Nor do I mean “interferon” which I had never heard of before MS, and do not know what it means, but know that it is printed on my box of “injections” right over the words “Chinese hamster ovary cells.”

Nor do I mean “infusion” which I am sure I had heard of before MS but never really thought too much about.ID-10063511

The “I” words that have been added to my post diagnosis lexicon and which are truly accommodating are “ish” “ing” and “icth.”

Let’s start with my favorite-“ish.”

I love “ish.”

“Ish” rocks my world and absolves the normally precise me from all responsibility.

“I’ll be there around 9ish,” can actually mean, “no I won’t, but I’ll give it a good try.”ID-10019322

Or, “I have no idea what time I will get there and cannot even begin to try to rationalize how my morning will proceed and how fast I might be moving, but I will roughly aim for some time around 9 in our particular time zone.”

On a stretch it can even mean, “We didn’t state a specific time, did we?”

The reason why “ish” is so good is because not only are you not committing yourself in any way, the ishness of “ish” can be broken down by several factors.

My view of “ish” is not your view of “ish” and 9ish can be anything from 7 to 11 and there is nothing anyone can do about it!

It doesn’t just work on time either.   When someone asks my age, “30ish” or “how often do you exercise, “often, I try to exercise once or twice a week, ish.”

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Do you see the beauty of “ish?”  I never appreciated it until my diagnosis but I am thrilled to have “ish” to help me out.

“Ing” is great to use when I try to describe symptoms that are totally indescribable.

My ears are making this “ringing,” “buzzing,” or “clopping” sound.

My fingers are “aching,” tingling,” and “vibrating” all the “freaking” time.

My foot is “dropping,” my legs are “weakening” my head is “pounding,” my brain is “fogging,” my eyes are “blurring,” my skin is “itching,” my stomach is “twisting” and my bladder won’t stop “going.”

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“Ing” doesn’t let me off the hook as much as “ish” but it sure makes it easier to explain what is going on in my body even when I have no clue what that is.

But if I’m really too tired to come up with an appropriate “ing” word or there are just too many too sort out, then the best word is “icth.”  “Icth” just sums it all up.

Some days, you are just not with it and MS is doing its best to do you in.   Well meaning people may say to you “well, tell me, specifically, how do you feel?”  Sometimes you just don’t have the specific words they need to understand.  So I just say I feel “icth.”

It’s important to let out a little breath when you say you feel “icth.”  If you are not sure about “icth,” then please allow me to tell you it is the next step up from “ick.”

Anybody can feel “ick.”  But when “ick” is not encompassing enough of your overall ickiness then you must use the word “icth.”  “Icth” is “ick” times twenty.

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Not only does “icth” describe your ickiness combined with all your other symptoms combined with your overall exhaustion, it also says “stop asking me how I feel because I don’t have energy to explain it to you!”

MS friends, far too many times, “icth” is my favorite word.

May you not have to say “icth” too often.

But if you do, then I’m glad “icth” is available for you too.

Friends, World MS Day is 5/27/15!  This is a day where MS’ers from all over the world come together to share our struggles, our symptoms, our strengths, and our stories.  It’s a day for all the way over 2 million of us.

Don’t know what you should do on this day?  Well check out the World MS Day link for ideas.

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Out of the Mouth of Lucy

Multiple Sclerosis investigated by a six year old

 

Lucy is my cousin and she is six.  Technically, she is my great, great cousin.  And, as she is a great, great kid, that would be great except that two greats simply means that I am aging, greatly.

(MS friends-if you were able to follow that great logic then today is an excellent day to redo your neurological-psych evaluation.)

Every summer Lucy, her mom, her big sister and her little brother come to visit me.  Is it because they think I am great?  Maybe a little but mostly I think it is because I live near a great beach.

We always have a blast during this visit but I think out of all of us, Lucy looks forward to it the most.

When her mom read aloud from Facebook last year that I was going to have to move, Lucy panicked about where I would move to and if there would still be enough room for them to visit.  She was thrilled to know that my new place had plenty of room.

As the summer gets closer, she starts talking about me and the visit more.

She is very smart and when my book came out she had two important questions-is the monster on the cover supposed to be MS and is the girl carrying the monster on a string supposed to be me?

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Yes, and yes my dear Lucy.   This knowledge caused her to happily proclaim to her teacher on the last day of school that she was going to the Cape to visit her cousin Yvonne who wrote a book about a monster.

I was so excited when my cousins arrived and we all promptly exchanged big hugs.  Lucy’s little brother is a runner and he immediately took off while his mom was unloading the car.  I tried to chase him but quickly gave up.  Luckily, Lucy’s older sister is an Olympic speed runner- she has to be to help her mom catch her brother.

Lucy noticed this and informed me that, “Yvonne, you have to be really, really fast to catch my brother.”

I replied, “But Lucy, I’m old.”

She made me feel better when she responded “and you have MS.  Maybe that makes you so slow.”

Later Miss Lucy wanted to know, “Yvonne do you take medicine for your MS?  Sometimes I have to take medicine for my allergies.”

I didn’t want to give her nightmares so I kept my shots hidden.  After all, they still really terrify me!

Lucy’s real name is Lucia which actually means light.  That is fitting as it completely floors me how bright Lucy is.

She isn’t afraid to exert her intelligence either.  We were playing a writing game and she informed me that, “Yvonne, you don’t know how to write.”

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Either my e’s looked like g’s or Lucy has been talking to my editor…

When I asked her yet again what grade she was going into in the fall she told me first grade and then said, “Yvonne you keep asking me that and asking me that.  You asked me today and you asked me yesterday and you asked me the other day. How come you keep asking me?  Is it because of MS that you can’t remember?”

I said yes, that was why I kept asking her the same question over and over and maybe it was true but it was also because I couldn’t believe she was only going into first grade.  I don’t think I knew anything when I was going into first grade.   Did I even know my name?

On our visit we found a man dressed as a soldier, pretending to be a statue.  He made money as he stands so still that people think he really is a statue and then they are so surprised when he’s not, they give him a dollar or two.  Lucy and I decided that this would be an easy way to make extra cash and so we practiced.

 

Turns out, Lucy was very good at this and could probably pay off college by the third grade if her parents want to let her start her career path early.  She would pick a pose and then we would both have to keep it for as long as possible.

She always outlasted me.  But she is a considerate child, stating after one pose, “Let’s not do this one.  It’s not fair as I take ballet but it is too hard for you as you have MS.”

And Lucy was my ally.  When her brother refused to eat the dinner I prepared she told him that he should try it as it was delicious.  “You know, even if something looks disgusting it can still taste good.” Her brother wasn’t convinced and opted for waffles instead but I was pleased.

When after dinner her brother spilled his glass of water, Lucy asked me if I ever yelled.  I had to think about that one and realized that no, I don’t yell.  I sure curse a lot but never over spilled water.  Spilled water is easy.

Spilled milk though?  I wouldn’t cry about it but I just might utter a profanity or two.

 

Of course, I didn’t tell Lucy that…

I miss having kids around.   Their questions are so spot on.

How refreshing would it be if the rest of the world looked at those of us with chronic illness and just asked what they wanted to know, without judgment or prejudice or ulterior motives?

How awesome would it be if people just asked their questions without worrying if their questions were insulting or dumb?

Even better, what if those asking the questions listened to the answers, really listened, like Lucy did?

Yes, I appreciated Lucy’s questions and concern.  And I enjoyed putting her concerns to rest.

 

Like the great concern she expressed when they were getting ready to leave, “Yvonne, I am worried about leaving you alone because you have MS and you don’t have a husband.”

Where did that one come from?  Was it because we were talking about all of them going home to see their daddy who stayed behind to pet sit and do work around the house?

I assured her that I would miss her too and all of her help.  I reminded her that she met my mom who lived close by and that I have a lot of friends.

This seemed to make her feel better.

But me, I couldn’t help thinking maybe a husband would be helpful….

And, man, that Lucy is some smart.   What grade is she going into????

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The Noisy Bed, Rated G

A multiple sclerosis staycation

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Last week, EMD Serono/Pfizer invited me and nine other MS bloggers from around the country to a summit. They wanted to pick our collective MS brains about MS blogger things.

It was an honor to be included among this talented and eclectic group, a bunch of folks as different as our own personal MS symptoms. EMD Serono/Pfizer wanted our brains in the best possible MS blogger working order and so they put us up overnight. As the closest to the summit headquarters I was able to drive to the event. My other new blogger friends flew. In airplanes that is, MS has not yet given us the ability to fly although one never knows what the future may bring.

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This was a bit of a staycation for me. The fatigue of my MS, (as well as the cost of living with a chronic illness,) makes an actual vacation somewhat difficult. I am able to travel to visit family but the energy expended on those trips goes to chasing my little nephews, not to sightseeing.

Anyway, arriving at the summit I checked into the super nice, super clean hotel room reserved just for me. I was impressed. It’s not often I am treated to such a lovely extravagance. The bed was huge and looked super comfy, topped with a ton of soft pillows I would not have to worry about putting back in order in the morning as I was in a hotel, not my own home-sweet.

After putting down my bag I ventured to check out the place and sat in the lobby for a while. There I met a fellow blogger who also had recently arrived for the summit. How do MS bloggers recognize each other as fellow MS bloggers? Is there a magic sign? Canes help, as do the long lines to the lobby restroom.

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But I recognized her by her forearm crutch and she likely recognized me by the confused, brain fogged expression that seems to be on my face even when I am having a “with it” kind of day. Turns out we knew each other and had communicated online. We chatted and then we each went up to our separate rooms to get ready for the planned banquet.

At dinner, which was delicious by the way, I sat among some of my fellow bloggers, some with companions, some not and we got to know each other. What do a group of MSers do for laughs over dinner? Tell bladder jokes, of course!

It started with the competitive me proudly announcing that I was the first to need the bathroom. I was hoping there would be a prize for this. Unfortunately one of my dinner companions announced he had already gone, twice, so I lost that game.

From there, bladder jokes followed. I’m proud to say we were the most raucous table in the room. But after dinner I began to fade.

Although I had only driven to the event and everyone else had dealt with airplanes and missed connections and long hours and taxicabs, I was the most beat. Many of the group wanted to head to the bar to chat some more but I wanted to go to bed, my nice, huge, soft bed. Even among MS lightweights I am a lightweight! I said goodnight and left the group. I think most of them called it a night too- we MSers often have great ideas but teeny tiny reserve.

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I checked some emails, changed into pj’s, pulled out what I would wear to the summit so I could get ready quickly in the morning, and climbed into bed.

There was a noise.

I ignored it.

It didn’t go away.

I buried my head under all those super soft pillows.

I could still hear it.

I figured I was so tired I would just sleep right through it.

I didn’t.

I figured putting the TV on would drown it out.

It didn’t.

I buried my head under the covers and under all the pillows to muffle the sound even more.

I could hear it still.

I told myself that if I stopped thinking about it, it would go away.

The more I stopped thinking about it the louder it became.

I got up to see if the sound had anything to do with the heating system, something I could control.

It didn’t and I couldn’t.

The sound was like a particularly obnoxious motor, motoring sounds being particularly difficult for me. I have complained about weird ear noises with my MS since before doctors knew MS caused weird ear noises. Was I imagining this horrible sound?

I was reluctant to call the front desk for fear of two things- what if they couldn’t hear it because it was all in my head and what if they moved me? I was in pj’s and my clothes were unpacked and all laid out. I didn’t want to move. I just wanted to sleep before the big day tomorrow.

The tossing and turning went on for three hours. At 1AM I called the front desk and they sent someone up. He didn’t hear anything. He offered to help move me. While I repacked he did admit there was a generator outside of my window and that could be the noise I heard.

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As we walked to a new room on the other side of the building he also told me he was hard of hearing! Oh, and he worked near the generator all the time so he had gotten used to the sound.

The new room was just as lovely and I again unpacked and crawled into the second super soft bed. It was quiet. NOW, I could sleep.

Except I was wired. I thought maybe TV playing softly in the background would lull me to sleep. I got up and grabbed the remote. Back in bed I realized the volume was too loud. I picked up the remote to turn it down. The batteries were dead. I got up and manually shut the TV off. And sometime after 2AM I drifted off to sleep.

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Here is a picture of all of us at the summit. It might be hard to recognize me so let me help you. In front, see the beautiful, fashionably dressed black woman on the scooter? I’m next to her, wearing purple and what I THOUGHT was a slimming outfit.

At the summit the next day we were asked to list what gives us strength. On auto pilot from the events of the middle of the night I listed my strengths as God, humor, family/friends, and the Rolling Stones.

 

As the day wore on and our collective and usual MS fatigue combined with the after the delicious lunch fatigue, all of us entered a slight brain fog state. Still, we did our best and I hope the company found useful information sprouting from our foggy brains.

The thing was, as tired as we all were, we didn’t want the day to end. As it did, we found ourselves lingering, chatting and exchanging info. As beyond exhausted as we were, we didn’t want to say goodbye.

So here is what I learned from the EMD Serono/Pfizer MS Summit. When I listed my strengths, my brain wasn’t just meandering through the autopilot zone. My strength that day came from my awesome new friends. This little group who became family through a weird genetic trait of happening to be MS bloggers, managed to hold each other up as we got to know each other. Zombie brains, scooters, crutches, canes, and all….

For you friends, here are the excellent websites/blogs represented by this incredible group. One is so spectacular it doesn’t even need mentioning- www.yvonnedesousa.com   haha!

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Here are the nine others- in no particular order except the order in which we sat during the summit. Please check them out!

My New Normals

Inside My Story

Brass and Ivory: Life  with MS and RA

MS Views and News

Managing MS

JonChandonnet.com

Ms Lisa Says

MS Fitness Challenge

Active MSers

 

 

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MS Madness is released!!

Hi friends!

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So it’s finally official-

 MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis is available in the print version!

(E-book readers, your version will be out very soon!)

 There are many ways you can get your copy of my new book.  It is available on both Amazon.com and BarnesandNoble.com

 It is also available through my publisher, SDP Publishing.

 MS Madness! retails for $14.99 but all of the above websites are offering it for a reduced price for a short period of time.

 Or you can request MS Madness! from your local bookstore or ask your local library to order it for you.

 Friends in the Cape Cod area, you can also pick up your autographed copy at one of my local readings!  Please check out the appearances tab on this website.

Thank you for your patience- I hope my book brings you lots and lots of giggles!

 Yvonne

Mr. Clean is the Man for Me

Multiple sclerosis tries to clean up

It’s not a secret that I have slight germ-a-phobe tendencies. I’m not quite ready to lock myself in a plastic bubble (scrubbing bubbles to be precise) just yet, but it is troublesome. On a yearly family trip with my mom and sister, I have to run and hide when they watch reruns of Monk. It’s not that the violence is too much for me, but because it frightens me how much I can relate to his mysophobia– the official name of the condition also known as germ psycho.

But here’s another secret about me that you likely don’t know. While a germ-a-phobe, I am a lousy cleaner! Come to my house and it looks neat and tidy and organized and everything is in its place. But upon further inspection, you will see layers of dust that are freaking me out but that I don’t have the energy to get rid of. I just dusted five weeks ago- how can there be so much dust again?

While this particular personal conundrum has nothing to do with MS, my MS does not help the situation. Frankly, it is wearing me down.

Earlier this week I desperately needed to clean my bathroom. And I mean a whole floor to ceiling scrub down. I had it on my list of things to do for weeks, spot cleaning here and there to combat my mysophobia.

Thank goodness for Lysol wipes, the super expensive solution to every poor, fatigued germ-a-phobe’s worst nightmares.

 

Eventually I scheduled a day to attack the bathroom. Scheduling a day meant I had to find a day where I could rest up for a couple of days before and then be able to rest a couple of days afterwards. Fellow MSers can relate.

That morning I blasted loud rock music to help me accomplish this task. My MS aches combined with my lack of cleaning abilities combined with my MS lack of balance, made the whole 5 hour job treacherous.

Good thing I had been working on my balance issues with the Wii. The scary and weird contortions I had to twist into to get to the high places in my shower stall were worst than walking a tightrope between two skyscrapers (the balance game I am using on my Wii– imaginary skyscrapers but still dangerous.)

Many times I would have to grab the shower curtain rod to steady myself, like that was really going to protect me should I start to slip.

On my hands and knees scrubbing away at the soap scum in the tub while Pink blasted through my apartment (so what, I’m still a rock star, I got my rock moves, and I don’t need you…) I whined to myself about the difficulty that cleaning had become. Everything ached and I wasn’t even close to be being done.

 

Then something truly horrible happened- I glanced at the can I sprayed all over my tub only to see in big letters on the front- KABOOM, Foam-Tastic Toilet Cleaner. I was cleaning my tub with toilet bowl cleaner!

How could this be? I know MS made me dumb at times but I had bought this stuff because of the commercial where the lady sprays her tub with this blue stuff and then everything turns white and sparkly. But it was toilet bowl cleaner! Talk about false advertising. And now I was super grossed out.

I did my best to get off the floor, which took another 5 hours-actually 5 minutes but it felt like 5 hours- and read the tiny fine print on the back. Seems KABOOM toilet bowl cleaner can also be used on fiberglass and glazed ceramic tiles.

 

Was my bathroom made of fiberglass or glazed ceramic tiles? I had no idea. Should I go to the computer to research this? I would but was too fearful of mixing my bathroom germs with my keyboard germs.

I collapsed into a corner of the bathroom and returned to scrubbing and thinking, there had to be a better way. When the folks in the know finished making things to make cooking with MS easier, can’t they start making things to make cleaning with MS easier?

 

My brain fog actually discovered the answer-his name is Mr. Clean! Pink’s music became replaced with this jingle-

Mr. Clean, Mr. Clean gets rid of dirt and grime and grease

in just under a minute.

Mr. Clean will clean your whole house

and everything that’s in it!”

Everything? Me too? Will he clean me as well? Sometimes I am just too tired to even take a shower. Maybe Mr. Clean will help! Not on the first date of course, but maybe after a dinner or two. Before I knew it I was actually fantasizing about Mr. Clean, the man who “was born to clean.”

 

He’s strong, handsome, and he is the man for me! I don’t even mind that he’s bald. Some guys rocky baldness in a sexy way, like Howie Mandel, another person with a mysophobia problem.  Come to think of it, so does my MS hero, Montel Williams.

Maybe I could talk Mr. Clean into doing something about those bushy eyebrows but if not, I’m flexible.

That’s it. I’m throwing all my thoughts of being too tired to date out the dirty window. Mr. Clean is the man for me!

 

New life plan- I have to meet him.

And quick, my recently cleaned bathroom won’t stay germ free for long!

 

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

Thank you for your patience friends! I expect a release date within the next ten days!

Feeling a Little Icky?

Multiple sclerosis ickiness returns…

Been a little crazy in my world lately friends so posting another repeat.  Since MS ickiness is a pretty regular things, I’m hoping you won’t mind!

But before we get to the blog, please remember my ongoing contest!  While I have had some great entries, the grand prize of a $25 Amazon gift card and an autographed copy of my book MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis.

For contest details, please see my last post MS Insanity Galore.  Contest is open until 12/26/13.

 

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

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

1. I don’t even like that song and

2. I really, really don’t feel pretty at all.

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

Luckily, kids don’t really notice what you are wearing (except for the 21 month old who enjoys undoing and redoing the snaps on one of my sweaters, luckily a sweater I wear with a light shirt underneath.) And while family may notice what you wear, they aren’t really supposed to care.

dudes

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

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

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

 

I feel achy, oh so achy

I feel achy and shaky and uptight

And I pity the person who bugs me tonight

I feel icky, oh so icky

It is sickly how icky I feel

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

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

I feel sticky, oh so sticky

I feel sticky and sickly and tickly

It is a wonder if I will sleep tonight

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

I feel itchy, oh so itchy

It is witchy how itchy I am

A very itchy and bitchy ma’am

See the grouchy girl in that mirror there,

Who can that crab apple be?

 

Such an achy body,

Such tired eyes,

Such a lazy gait

In another state I must be.

I feel sleepy, oh so sleepy

So sleepy and weepy, it’s not right

And it isn’t even close to night!

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

It must be the heat,

Or some rare disease,

Or too much too eat,

Or maybe its fleas!

I feel icky, oh so icky

It is sickly how icky I feel

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

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

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

But I will definitely feel less icky.

 

 

 

 

Hey MS, Hug This!

Some results, dancing, and a little bit of a book

 

Hope everyone is stuffed in a good way this day after Thanksgiving!

First up on today’s blog, I must apologize for misstating the chapter of MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis. I have been talking about the Hey MS, Hug This as chapter 19 in my upcoming book. It is actually chapter 20. Forgive me for this lie. It wasn’t intentional. It was MS’s fault.

As promised, I had planned to name the winner of my first contest. Unfortunately, there were no winners, and for that, I apologize as well. I thought it would be easy. The questions was, Hey MS, Hug This, is one of the more serious chapters in my book and it details one of the most frustrating aspects of multiple sclerosis. What is that aspect? Hint- it is not the MS Hug.

The most common answers were fatigue and bladder issues, and it is true, those are incredibly frustrating. But the answer I was going for was FRUSTRATION itself. To me, frustration just sums it all up.

A painful symptom is called a hug.

 

The so you don’t pee all night meds give you wicked dry mouth which makes you need to drink water constantly which makes you pee even more.

You can fight fatigue by taking better care of yourself but taking better care of yourself requires energy you don’t have because you are too fatigued.

And on and on the frustration goes with multiple sclerosis…

I’m sorry that there were not any winners but I thank you all for entering. I will announce my next contest on Friday, 12/6 and I promise that the prizes will be greater and I will offer more flexibility in the answer to guarantee a winner!

But also as promised, if you are still too stuffed to move and want a little reading, here is a preview of MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis.

 

From Chapter 20 Hey MS, Hug This!

…..What do things like boyfriends, memories, and balancing partying with being responsible have to do with MS? All of them were aging me much faster than I wanted to be aged. And that was completely frustrating! Maybe only a little frustrating as I was already a cognitive mess. But in these months following the diagnosis, all these things started to swirl together in my jumbled brain. It all made relieving, frustrating sense…….

……By my late thirties, I was so convinced I was turning into an old lady far too early that I began to state this fact to people. I had noticed Zack around town before we actually met and even though he claimed he caught me making googly eyes at him, I always denied it.

“I was NOT making googly eyes at you,” I would insist. “I just wanted to know who you were and what you were doing in my town, that’s all.”

After we actually met, he was more the pursuer. He was two years younger than me and I already felt like an old lady, so I balked at dating a younger man. When he asked how old I was I told him that I was eighty-seven. Luckily, he ignored my feeble joke and we started dating anyway.

 

My elderly weirdness increased. My bladder became more obnoxious and soon I stopped drinking beer. One beer and I would have to hang out near a bathroom for hours, at least.

The extreme fatigue came next. Zack and I could never watch an entire movie together. I was always asleep halfway through and would have to finish it the next morning with a cup of my grandma’s tea, sweetened just so. By that time, Zack’s normal brain had moved on to other things so rarely did we ever enjoy or discuss the movie together.

We kept trying though and even went with friends to see the second installment of the Pirates of the Caribbean franchise at a surround sound theater. Amid the bar fights, explosions, and general loud pirate activity, I was asleep.

(For the record, I did not fall asleep during the third and fourth versions as the anticipation of seeing Keith Richards on the big screen was enough to keep me alert.) ……..

 

….Later, of course, I realized all of those issues were not hypochondria but the early symptoms of my strange disease. The peeing constantly was from bladder issues associated with MS.

The fatigue stemmed from my body trying to fight its own immune system that was causing the illness.

The aches were from spasticity, which means that my muscles were going spastic.

The mood swings probably weren’t about MS, but let’s blame MS anyway.

The weird stomach ache was a symptom called an MS hug. A hug? That’s what my bizarre, painful, twisting, almost hospital-going, practically ruining the Portuguese Festival illness event was, a hug sent to me with care directly from the huge MS PAC-Man-looking antibodies in my body.

I thought my appendix was bursting, my friend thought I was pregnant, my cousin thought I needed to go to my grandmother’s and take one of her laxatives, his girlfriend thought I should consume weeds. But no, it was one of many hugs. Hey MS, hug this!…..

…..Even dear friends began to think nothing was wrong with me. Well, that was just fine, until one of the symptoms did come up. Then I was making excuses. If I felt unable to do something, they thought I wasn’t trying hard enough. When I tried to explain why it was tricky, then I was using MS as an excuse.

“You can’t blame MS for everything,” I was often told in regard to my exhaustion, clumsiness due to lack of balance, and my inability to focus on something. I laughed it off when it took me longer to get a joke, or when I had a hard time trying to figure out what was being said when words were spelled out instead of simply stated.

If one of my friends asked me in front of her young child, “Have you seen a-s-s-h-o-l-e lately?” I never got what she was saying on the first try. I had to piece it together in my MS brain.

 

We would be onto a whole different conversation before I figured out what a-s-s-h-o-l-e spelled and which a-s-s-h-o-l-e that friend was referring too. The irony of being an honors college graduate with a major in English who suddenly couldn’t spell a-s-s-h-o-l-e was not lost on me…..

…..Dr. M and I eventually decided I should go to a Vocational Rehabilitation Specialist. At the orientation they told me to think up my dream job and let them know when I met with the counselor what it was and they would help me find it. So I did.

I was writing a lot and thought maybe they knew of a paper where I could freelance and/or a company that needed somebody part time to write their newsletter. I could do that. The counselor told me starving writers were a dime a dozen, so I obviously needed to forget about them helping with that type of work.

What else did I want to do?

“Ummm, how about working in reception? I’m pretty friendly.”

She told me I didn’t need her help to get that job. Probably true, but I didn’t know how much I could make with my state insurance and needed her input on what people with relapsing- remitting MS do for work, when they have symptoms that come and go. In orientation, they had said they worked with people with MS all the time-they must know how people like me managed.

“Oh, you’ll have to figure those things out on your own.”

She was very nice but I was very confused and frustrated and not sure any more what I was doing there. After many calls and different answers and more hold time and confusion I did learn that if I got federal assistance and a part time job, I could not make more than forty dollars a month or I would lose my health insurance. But I wasn’t angry. Just frustrated.

*******************************************************

 

And now for our goodbye to season 17 of Dancing with the StarsJack Osbourne won! OK, officially, he didn’t take home the Mirror Ball Trophy, Amber Riley and Derek Hough did. And well deserved it was- they were fantastic!

But Jack went all the way, coming in third and dancing like he never thought he could! Who would have thought that without any experience at all, he would take his spirit and determination this far! And he happily brought all of us along the journey with him.

Way to go Jack! May you spend some time resting your achy feet and on to the next adventure!!!