Tag Archives: dancing with the stars

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.

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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!!!

 

 

 

A Few of My Favorite Things

A little MS gratitude just in time for Thanksgiving

 

Hello friends-  this blog is a repeat as I am kind of out of town and thus, a little too out of my mind to come up with a new blog.  At least this repeat has some holiday relevancy.  Even if you don’t like reading repeats, please look to the bottom for a Dancing with the Stars update and a little reminder.

For some reason, I can’t get the above song out of my head even though I have usually found it slightly annoying. It is kind of a Christmas song, although not written as such. Since I love autumn so much that I cherish taking my cool weather holidays one at a time, I’m not sure why this song is hanging around my lesion filled brain.

Perhaps it is because next week is Thanksgiving and the above reminds everyone of what what’s her name from that movie is grateful for. Thus, why isn’t A Few of My Favorite Things thought of as a Thanksgiving song?

 

I have so many things for which to be grateful, that I couldn’t possible name them all or fit them into a song. And trust me, mittens and kittens are not at the top of the list.

Just thinking about Thanksgiving makes me grateful.

For example, if my small family winds up at my place on the holiday then I am super grateful that the local grocery store sells what I like to call ‘turkey in a box’; a complete holiday dinner you can just throw into the oven all prepared and no one is the wiser.

I am grateful for pumpkin pie- how could I have possibly left out pumpkin pie on my prior Pumpkins, Pumpkins Everywhere post?

I am thankful that Thanksgiving is a day where it is perfectly appropriate to eat too much and veg out. It is actually un-American not to do so.

And I am thankful that even the fruits and veggies cooperate on this day and aren’t too obnoxious- think mashed potatoes, stuffing with celery, cranberry sauce, candied yams, pumpkin pie. I know, again with the pumpkin overkill.

 

I am grateful for the knowledge that Black Friday is just a scam of hype and deals that aren’t really deals, thus allowing smug people like me the luxury to stay home, eat too many leftovers and veg out for one more day.

But this is a multiple sclerosis blog and so if I am going to list things that I am grateful for, or a few of my favorite things, I should focus on MS. What could one possibly find to be grateful for about MS?

Nothing really.  Absolutely nothing.

But in thinking about my last few years living with this illness, I did miraculously come up with some things associated with MS to be grateful for.

For example, while I am not thankful to have to give myself shots, I AM very thankful that they seem to be working. And I am thankful for the extra fat cushion I have to soften the shot just a bit. I still HATE doing them though.

 

I am thankful to have a knowledgeable, kind, patient, young, handsome neurologist on my side as I battle MS. I am NOT thankful that he happens to be married but I guess you can’t have everything.

I am grateful that my primary doctor diagnosed my diagnosis quickly without having to do a spinal tap as I have heard they are just horrific. She just had me electrocuted and shot through a tube a couple of times and we were good to go.

These bits of MS gratitude did not seem grateful enough. I started looking over my blog posts for more help and realized that I started this blog over two years ago and it has since grown from a whenever I felt like it post, to a once a month post, to twice a month post and then to a once a week post. (Thank you to multiple sclerosis for continuing to give me enough material to keep this wacky blog going- oh wait- maybe not….)

In my past blogs there were other examples of MS things I had to be thankful for. In the post Stormy, Sleepy Sandy, I talk about my bladder alarm clock screaming at me to get up. I am thankful that the alarm clock part of my bladder is still working. It has been quite a long while since I have had ‘an accident’ and I would like to keep it that way for as long as possible.

 

I am thankful that kale is considered an awesome veggie for MS’er’s as well as the world as a whole, and I can sneak its precious nutrients into my all time favorite comfort food, kale soup- see post Kale, the New Frontier.

I am thankful that due to cognitive difficulties that come from MS, when I do something stupid I have a disease I can totally blame it on (Stupid MS).

While fatigue and clumsiness are constant companions, and I am may not move so gracefully going about my day- No Moves Like Jagger but Smooth Like Montel and Chop Their Happy Little Heads Off posts- I am grateful that I am still moving. Being able to move about without any help is definitely something to be grateful for, even if you do move like a slug most days.

And while an eye exam discovered a new disgusting condition, Oily Tears and All, I am grateful it didn’t show any significant damage as yet to my optic nerve. I will be able to continue reading the numbers on my bedroom scale and the milligrams on my medications going up, up, up a while longer…

And on this sappy holiday of Thanksgiving, I must say I am thankful to God who is the real being responsible for the above. My health, my sense of humor or lack thereof depending on your opinion dear reader, my friends, my family and everything good comes from HIM. Fortunately for me, HE also enjoys a good joke or two. HE absolutely appreciates a rip roaring laugh. I think that may be why he created us in the first place!

 

DWTS Moment- It happened friends, it really happened!  Jack Osbourne made it into the finals of Dancing with the Stars!

It didn’t come easily as it was a difficult week for him.  In a very emotional letter on Facebook, and on the show, Jack discussed his tough week with MS relapses.  He described the many symptoms that attacked that week and how they affected not only him, but people who rely on him, like his dance partner Cheryl Burke.    Cheryl didn’t totally understand but she did her best to stand by her partner  and remind him that “it’s just a dance competition.”

I so admire Jack Osbourne and all that he has done on this reality dance show.  Not because he is famous.  And not because he has MS, but in spite of it.  Jack reminds us of the unexpected ugliness that can it rear it’s head on our fight to follow our dreams, and of the ways we can still succeed by adjusting.  He also reminds the rest of the world that while our world may look pretty, inside it ain’t always so.

And to top it all off, he is a kick butt dancer!  Way to go Jack!

 

I am not posting the voting methods today as I’m not sure if you can vote this week.  Yes, I have watched every season since the show started and so I should have this info down but hey, I have MS.

Friendly Reminder-Only one week left to enter my contest!  Please enter by sending me a message in the contact section of this website and/or by sending a private message to my Facebook page Yvonne desousa.com

 

Next week I will announce the winner/winners and include excerpts of the chapter from my soon to be released book, MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis the answer is based on. Please see my last blog on 11/15 for the contest rules.

Here is the question-

Chapter 19 (Hey MS, Hug This) is one of the more serious chapters of MS Madness and discusses one of the most frustrating aspects of living with multiple sclerosis.  What is that aspect?

Hint- it is not the MS Hug.

A Happy and Healthy Thanksgiving to all!

 

 

All Aboard!

Multiple Sclerosis crazy

 

                                                         Riding on a train

Come and ride with me

Let’s look out the window and see what we can see

 Friends, do you know this song?  I’m not even sure that it is an actual song, like with a copyright and royalties and stuff.  I just know it is the words and music that blasts from one of my nephew’s favorite toys.

This nephew, his brother and his parents live very far away and so I don’t get to play with the train often.  BUT, I will be seeing all of them (even the train toy,) next month so perhaps that is why the train song is on my mind, annoying though it may be.

 

But I doubt it.  I think the real reason this silly song is hanging around has to do with multiple sclerosis.

Since way before my diagnosis I have had weird things going on in my ears.  My first neurologist told me four years ago that this was not likely MS related.  But now I read that strange ear stuff is yet another of the many strange symptoms of MS.  Aches and unexplained noises are part of the MS/ear connection.

I wanted to research this a bit to make sure that my ear noises were normal and of course, they are not.  What I hear is a train when there is supposedly no train.

 

It started in my old neighborhood, the one I lived in for almost six years up until about six weeks ago.  For a while, once a morning, I would hear a train passing through the woods behind my house.  This was strange as there hadn’t been a train in these parts since 1938.

But things change of course.  A local business must have re-built the tracks in order to ship goods in and out of the area.  My town was pretty small and not at all commercial, but I had heard that there was a coffee retailer nearby that did all kinds of things with coffee beans.

 

Maybe in fear of the feds cutting postal service, they started a coffee train.  That was what I assumed anyway.

Just to make sure, I mentioned this to my neighbor who had lived in the area even longer than I had.

“So, what’s up with the train I hear every morning?”

“What train?”

“Don’t you hear it?  It goes by behind our houses constantly.  I hear it all the time.”

“Ah, the only thing behind our houses is ponds, lakes and trees.  There hasn’t been a train in these parts since 1938.”

 

I figured my poor neighbor must have lost it.  Or, she had bad hearing.

This was confirmed when I moved across our little town, about five miles away.  Sure enough, there was the train.  To prove I knew what I was talking about, I decided to write down the time that I heard it and then I might be able to figure out its schedule and hence, its story.  Then I didn’t hear it for days and by the time I heard it again, I forgot to write down the time.

Recently, I was at my mom’s house, the next town over from my little town when I heard the train again.  I pointed it out to her.

“Train, what train?  There hasn’t been a train around here since at least 1937, maybe 1938.”

“But I just heard it.”

“I didn’t hear a train.  I heard a car horn several minutes ago, but no train.  I think you may have lost it,” my mom told me.

I wanted to prove I wasn’t crazy so I started researching the train online.  Nothing.

So then I did what I always do when something confuses me and makes me want to pull my hair out, I blamed MS.  Online again, several articles describe ear problems with MS.  But no train noises.

 

Filled with frustration, I did what I do best.  I pulled the covers over my head and sang the toy train song over and over.

I refuse to believe that I am crazy.  It must just be a crazy train

 

Mental wounds not healing

Life’s a bitter shame

I’m going off the rails on a crazy train…..

Crazy Train

by Osbourne, Rhoads and Daisley

So speaking of Ozzy, now is a good time for our Dancing with the Stars moment.  Jack Osbourne has made it to week four in season 17.  The Cha Cha was not his best dance.  As a long time fan of the show I can offer three reasons why that may be-

  1. The Cha Cha is just not for him
  2. He had an off night
  3. Partner Cheryl Burke may have done some bizarre choreography.

Whatever it was, off nights happen to all the stars at least once in the season.  I’m just thrilled he is still in and doing such a great job.

I do have a suggestion however.  Jack, please share with the world what the intense rehearsal schedule is like for you.

 

Yes, I know it is often a fine line between describing our MS symptoms and complaining about them, and you don’t want to be seen as any less of a competitor than your fellow stars.  And I am sure you don’t want to sound like you are asking for sympathy in any way.

But you being in the competition has become a springboard for a conversation about MS, and not always in a good way.  Please help your fellow MS’ers with the conversation by offering some realities on how you deal with life, a heavy dance card and MS.

Fun quotes of the night-

“I’m an insecure pimp, a scared pimp.” Jack Osbourne

“Your arm does all these strange amorphous things.”  Judge Carrie Ann Inaba

Please keep voting-

 

Vote for Jack and his partner Cheryl Burke by calling 1-800-868-3402 up to 60 minutes after the show on Monday nights or by logging onto ABC.com or Facebook.com/votedwts up to 24 hours after.

 

And finally, speaking of crazy, a book (my book- now that’s crazy!) is in the works.  I have been working away with an editor and a publisher and we are aiming for a release date of mid-February 2014.  And the big news, we are close to coming up with a title!

I will keep you posted and hope you will consider checking the book out….  If you like my blogs, you should love the book.  I have been working on it and savoring every word tediously for over three years now, so it’s got to be good, right?

 

 

Flipnastics, Again

Incidental MS sports

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Thank you to WEGO Health for making me one of the ten finalists for their Hilarious Health Activist Award! It is so fun and exciting to be nominated and I am in amazing company!

Yesterday a handsome FedEx guy delivered an unexpected package. The handsome FedEx guy should not be confused with the handsome UPS guy who delivers my drugs and who didn’t show up last night- hmmmm…..

Inside the box was another box with ribbons and a bow and inside that was fun party goodies to make a celebration out of the awards ceremony this week. Stay tuned! Win or not, I was thrilled to be nominated which came from readers (and the people I bullied into nominating me,) so thank you!

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If you are a regular reader and the following post seems familiar, your brain fog is not acting up. March has been a little insane so I thought I would re-post the very first blog I ever wrote. If your brain fog is acting up, you likely won’t remember reading this the first time. So conintue on to see how how multiple sclerosis has made this normally clumsy girl super agile….

Like with everything else related to multiple sclerosis, it makes no sense that this disease would turn me into an Olympic worthy gymnast. It makes no sense as my whole life, I have been an athletically challenged klutz.

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I still remember clinging for dear life to the neck of my 3rd grade gym teacher as she tried to get me to flip over the uneven bars. Those things were high! She might as well have been telling me to jump off a water tower. With my panicked cries and the limited breathing my clutching her neck was causing, she finally put me down and let me skip that exercise.

Entering into the middle grades I thought I might play basketball. My grandfather had loved that sport and really, how hard could it be?

My two memories of participating were of confusing the referees and saving a crucial game in an embarrassing way.

In the former, I was on the bench where I spent most of the games when the ball came right at me. I caught it and was quite proud. It was a good catch and I thought everyone in the stands would cheer. But apparently, as I learned, catching the ball when you are not on the court is not the way to play. Fans jeered and the refs got into a debate on how to fairly resume the game.

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The latter incident consisted of an exciting match-up against our arch rivals and I was actually on the court, defending an opponent. I managed to keep the high scorer from getting the ball when a throw bounced directly off my head. I was dizzy and mortified as everyone laughed, but we won. I will take credit for that win, thank you very much.

I’m not sure how far back you can go in blaming MS for your clumsiness but as I have learned to do with many things MS, I will blame MS for everything. Weird then, that through the illness I have picked up some incredible gymnastic feats. For example, I have become an excellent flipper, the 3rd grade trauma non-withstanding.

Two years before my diagnosis, my then boyfriend was visiting and wanted some ice cream. As he only wanted a little, I got a mug down from the cupboard. Everyone knows that even if you fill it to the brim, and go back for seconds and thirds, ice cream served in a mug instead of a bowl has far less calories.

The quart of cookie dough was frozen solid and I didn’t want my new love to have to wait. And I hadn’t yet learned the trick of running the metal scooper under hot water. Nor did I believe the trick about microwaving the whole quart for a few seconds.

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I struggled and struggled with the scoop until I formed a perfect ball of creamy sweetness. But I couldn’t get it out of the container. I pulled and pulled and the scoop of ice scream suddenly flew out of the quart, rose several feet in the air, did three flips, and landed dead center in the waiting mug. Amazing!

That was a 9.987 for difficulty and a 9.998 for execution. Hey Dorothy Hamil, take that and the silly haircut my mom made me wear in the 70’s-ha!

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(2013- added note. I have shared this post with many, many people and no one caught that Dorothy Hamil was actually an ice skater not a gymnast/flipper. Go figure! Maybe no one caught it as it was all MS people with brain fog I was sharing this post with. I only figured it out now as she is on this season’s Dancing with the Stars. And now, back to blog.)

 

But no one saw it. All my date witnessed was me laughing hysterically and trying to explain the reason for the giggles while also trying to breath.

Recently, I was putting on mascara. Quite a brave feat for some MS’ers as my sister Laurie has stabbed herself in the eye with the wand on many occasions. I was feeling brave though so I confidently applied my make-up.

Suddenly, the wand shot out of my hand, rose three feet in the air, did three flips and then wrote out my name on my back and on my floor. 9.854 for difficulty, 9.8675 for execution.

Ok, so maybe it is a stretch to say the wand spelled out my name. But as I looked at my left shoulder in the mirror, the splashes of brownish/black took the rough form of a “y” and a “v”. Where the wand landed on the floor was a circle blotch “o”. Perhaps I have to keep working on that move to get the spelling of my whole name.

So maybe we are onto something as MS has made me good at several sports, not just flipping. There is the sport of Falling Down Gracefully Without Getting Hurt and the Dancing Rhythmically Down the Bottom Portion of a Staircase if you Miss a Step or Two, sport.

The staircase event is a little dangerous and I, for one, need some work to compete in that arena. And maybe protective gear.

But I have also almost perfected the Elegantly Gliding Around Your Floor When You Spill Something Slippery On It competition (2013- ahhh,  now we actually get to Dorothy Hamil).

Many MS’ers do okay in the balance beam events as long as spectators realize that the balance beam is actually the ground.

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How come these feats of wonder aren’t worthy of a medal?

How come we are only able to compete in them when we aren’t trying to?

How come we aren’t being filmed at the time or witnessed in any way when we obtain the perfect aerial feat?

It really sucks when you have this talent but no one is around to view it or believes you when you describe it.

Oh yeah, I forgot, it’s MS, of course it sucks.

To see all the WEGO Health Activist Award check out their Facebook page.  To learn more about them, check out their website,  www.wegohealth.com

 

 

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