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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!

 

 

What’s in a Name?

A new multiple sclerosis/yvonnedesousa.com contest

ID-100160520This week’s post features something new and a request for help. So many readers have kindly suggested that one of these days I should put my crazy MS opinions and antics into a book.

The thing is, I actually have written a book; a book that lives in a link somewhere in the midst of the confusion that is my laptop’s brain. Please don’t think I don’t take the book writing process seriously. I also keep a copy of the book safely stored in a corner of my spare bedroom where it successfully gathers mounds of dust that I refer to as fantasy readers. They have enjoyed it immensely.

But now, and upon the recommendation of many of you, I have teamed with a small publishing company and hope to have a finished copy of the book available for living, breathing readers by the end of the year.

Or, as I like to call it, the “just in time to suggest how a book about a crazy girl with an even crazier illness would be the perfect Christmas gift for friend, sibling, coworker, cousin, neighbor, the Yankee Swap etc, season.”

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There is just one problem. For all my damaged MS nerves, I have not been able to come up with a good title. And since I am now tired and cranky about it, I thought I would ask for your ideas in the form of a new contest here on yvonnedesousa.com

(See my prior post, 50 Shades of Green/Doing It Veggie Style for proof that there was a first contest.)

Why would you want to offer me your clever titles for my upcoming book? Because it may help you cure multiple sclerosis!

Here’s how- you come up with an amazing title that will make people want to buy my book and then a portion of the proceeds from the sale of my book will go to various non-profit agencies that are helping those living with MS and researching how to cure MS. If enough people are attracted to your title, the more books they buy, the more donations the agencies get and with that money the more research they can do, and that research leads to a cure!

Ok, that is possibly quite the stretch, but you get the idea. The winning title and its creator will also get bragging rights, a free autographed copy of the book and a credit inside for all to see!

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Here are the official details-

1. The title must be original (at least as far as you and your MS brain can remember.) It must also be quirky and engaging enough to catch a reader’s attention, humorous enough to suggest that this is a lighthearted story, and use the term multiple sclerosis or MS so people know what it is I am whinnying (I mean writing) about.

2. You can submit up to 5 titles for consideration.

3. Please submit titles using the Contact link on this website to keep your suggestions private in case other MS writers are out there scouring the net for their own title ideas.

4. All titles must be submitted by 5/24/13 and include your contact info in case you win.

5. If your title is chosen, you will receive a free, autographed copy and your name or nickname in the book, however you want it to be listed. Additionally, a portion of the proceeds from the sale of each book will be donated to various charities that help those living with multiple sclerosis.

 

6. Also, to keep my publisher happy, if your title is chosen, you may have to sign a form granting us permission to use it whether or not the only copies I sell are to my parents and my high school English teacher or whether or not it becomes a bestseller bigger than Harry Potter.

One can dream can’t one?

7. Finally, to help you get the feel of the book I have enclosed a short, unedited passage below. The memoir is the story of the first year of my living with and adjusting to a diagnosis of multiple sclerosis, told with a sense of humor. Well, I think its funny… As my diagnosis came only a few days before Christmas, this part takes place on the morning of Christmas Eve as I was trying to sort out the news…

One last note, if you are really excited and would like even more information on how the book is written, check out three other unedited passages on the Excerpts link on this website…Those selections include a title but I don’t really like it which is why I need help from all of you…

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From a not officially titled manuscript by Yvonne deSousa

That morning I was excited. Christmas was here, I wasn’t in the hospital and I was practically ready. I had just a few more gifts to wrap, a few treats to take out of the pan and divvy up among plates for the visits I would make later, shower and go. Except the phone kept ringing with holiday well wishers and last minute plan makers. I showered and was in my warm, light blue, soft fuzzy bathrobe. It made me look like a huge blue bunny but it was comfy and good to wear while I did hair and makeup before getting dressed. UPS automated called to tell me they had a package for me but couldn’t find me. Was it a surprise Christmas gift? I was on hold for twenty minutes sorting out the address error and at the end of the call realized it was a package of information from the drug company. Information only, not even real drugs. How fun.

But that bummer news reminded me that I never called the drug company people back and if I didn’t do it now, I wouldn‘t be able to call them until the following week. I thought I had better get it over with, how long could it take?

I was on hold for twenty minutes until I finally got the actual nurse I needed to hold for. And, it turned out, she needed to ask me twenty questions before she could send me the actual drugs. I’ve come this far, I thought. She proceeded to ask me every medical question under the sun for me, my siblings, my parents, my grandparents, my friends, my neighbors, past boyfriends, future boyfriends, etc.

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I saw a car pull up. It was Serena with her ten year old twins stopping by to wish me a Merry Christmas. Serena didn’t know the MS news yet and I hardly ever got to see her girls. It was obvious I was home and I didn’t want the kids to think I was ignoring them. But I couldn’t lose this call after we had come this far so without thinking, I answered the door, forgetting I was in the fuzzy bathrobe. While the nurse on the line was asking me questions in one ear, I was facing extreme hoots of laughter from not only Serena, but her tough as nails boyfriend Bootsie, and was receiving hugs and kisses from her daughters. The whole time the nurse was asking, “do you lie out in the sun? Have you ever lied out in the sun? Does anyone you know lie out in the sun? Have you ever been to Africa? Has anyone you know ever been to Africa? Do you know where Africa is? Do you even like Africa?”

In the bathrobe that was no longer so comforting, I tried to get the nurse to pause for a breath, explain to the girls why I couldn’t invite them in and where I dropped off their presents, and shut up Serena and Bootsie without flipping them off as that wouldn’t be appropriate for the day or the kids.

And like that, it was Christmas. And time for visiting and the beautiful Mass and family and it was all I hoped it would be, complete with new holiday memories. Like how my mom who NEVER drinks, got tipsy on one glass of wine causing Drew and I to spring to the parking lot to quickly get the car and get her home, leaving her swaying drastically with only Laurie and her Canadian crutch to try to keep her from falling. Or, how, while chatting with them and making dinner on Christmas day I decided to spray my entire kitchen floor instead of the roasting pan with Pam making my kitchen a makeshift ice rink for us all. Drew and I had fun dangerously gliding around and serving while my mother watched nervously and waited for the plate crashing display that never actually came. Silly memories all, but memories to chuckle over for years….

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Just Not Feeling It

In memory of a young MS friend….

This morning I went to my weekly bible study and chatted with one of my study sisters who also has MS. She mentioned how affected she was by the death of Annette Funicello, both as a fan and as a person living with multiple sclerosis. I asked her to clarify.

While I knew the former Mousketeer and movie star had MS, I had heard that Annette died of a stroke. At age 70, that was certainly very sad, but a little distant from me. But my friend at study told me no, that Annette died from complications of her multiple sclerosis. That struck me deeper, but still, Ms Funicello was much, much older and likely had advanced progressive MS. I can often easily put out of my mind what I don’t want to think about.

At home, and working on this week’s blog, I saw on one of my MS Facebook communities that someone posted RIP Joanna Jordan. The name was in blue. Often I have wanted to address a message to someone and hit something too fast and that person’s whole name pops out. I assumed this was the case and asked the FB friend to correct herself, likely she meant RIP Annette Funicello as we had all been saying that for the past two days.

That had to be the case as the Joanna Jordan I knew was a beautiful, 39 year old mother of three with a vibrant smile who was also living with MS. She welcomed me into the social media communities’ right from the beginning and encouraged my writing. She was quick to offer positive comments and to laugh along with me at some of my crazy antics and add some of her own. Only days before, she had answered a question for me on the FB version of Who Wants to be a Millionaire, adding 10,000 dollars to my online account. Clearly the FB friend was having a bad MS day and hit the wrong button with her RIP comment.

But she did not. After researching I learned that the comment was not wrong. The wonderful Joanna Jordan who had become my friend in recent years, had died that morning, only two days after a more famous MS’er passed away. The reasons for Joanna’s passing are still unknown but with no obvious signs of distress, complications from multiple sclerosis are a possibility. The shock is still cutting.

I base my writing on learning to appreciate life and all it’s idiosyncrasies by keeping a sense of humor. I believe laughter is excellent medicine. I believe that sharing a smile with someone is an amazing gift. My friend Joanna believed this too.

But sometimes you just need to cry, to sob, to pour out your heartbreak in wet tears all over your world.

Sometimes MS just isn’t funny at all…

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Out of respect for Joanna and her family, this will be my only blog posting this week. My deepest sympathies and condolences to the family of the lovely woman who I’m sure greatly influenced many, many lives.

 

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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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MS/PMS MonSter Mash

An MS transformation

I recently joined a Facebook group for people with multiple sclerosis. The group is awesome and if anyone is looking for an online community where you can ask questions, meet other people in circumstances similar to yours, or just joke and vent, I encourage you to look into it. It is called Friends against the MonSter.

When the friend who started it told me about it, I was a little confused about the title. To me, monster is an affectionate term. I think it comes from being a kid.

When I was maybe eight or nine, Monster Mash by Boris Pickett was fun and huge and my favorite book back then was called How to Take Care of Your Monster by Norman Bridwell. Somehow I lost that book and have never found it again. If anyone knows where I can locate it, please let me know.

Several years later, when my nephew Drew was a grouchy baby living with colic, I took to calling him Drewmonster or Monsterbaby– see, total affection. In my messed up brain, for some reason when I think monster I think cute and cuddly. Thus, the name of the FB group didn’t seem appropriate. It is a page for people living with multiple sclerosis and I have yet to find anything cute and cuddly about that.

Vampire, Zombie, Serial Killer, Alien, Ghost, the specific name of frightening creature is frightening, but the word monster just doesn’t scare me.

Now Drew is a grown man and he and his wife have two little boys of their own. Both kids are adorable, and yes, cute and cuddly. One is just a baby and as innocent as a baby can be. The oldest of the two is 21 months and is smart, funny, delightful, and for the most part, happy. Like his dad, he is also stubborn. Upon this discovery I began to rethink the monster term. Something wasn’t clicking and I think I figured it out.

For 99.9% of the time, the child looks like this.

But when he is exhausted and his stubbornness kicks in, he can suddenly and terrifyingly change. I swear, one time I needed to change his diaper and he didn’t want it to be changed. I am still shuddering from the Linda Blair like look he gave me and had nightmares all that evening. I could literally see the transformation from adorable, perfect little boy to a creature I did not recognize.

This transformation reminded me of something but I wasn’t sure what. Eventually I figured out that it reminded me of me! But me when PMS attacks. All you male readers who hate hearing about things like PMS, may want to skip ahead a bit.

Before my family and I left on the trip to visit these amazing kids, I was trying to get things crossed off my to-do-before-I-leave list. As everything I attempted to complete didn’t get completed and were doing me in in their own frustrating way, I suddenly underwent an insidious transformation.

I could feel this ugly scary black cloud envelope me and I began to stomp around my home growling these guttural growls and shooting daggers at anything in my path. My landlord needed to stop by and when I answered the door he must have been frightened by the creature I had become. He backed away from the door saying the thing in the house he needed to check could be checked later and ran to his car.

“Wow, that’s screwed up,” I barked to no one, “why the hell did he come over in the first place??”

Sure enough, six days earlier than expected, my cycle started that evening.

Ok, so PMS can turn me into something scary but who knows what that something is…..

After a plane ride with my mom and sister to the state where the youngest members of our family lived, the transformation happened again. Two days after the arrival, the exhaustion from the long day of flying and headaches from all the noise, overwhelmed me. Then, landscapers showed up to work on the property we were staying at, complete with their machines and loud motors.

Next, somebody ticked me off and (and there was definitely no PMS about it,) the black cloud showed up with a vengeneance. I turned mean and scary, and my family and residents of the neighborhood began to run screaming from me as I approached.

Insane mood swings can be considered a part of MS, so I have been told. What is this blackness born of frustration, aches, and pain? What does it turn us MS’ers into? Where does it come from?

Since it is MS, it is probably unlikely that it will get figured out. But as my young great nephew can turn from cute and cuddly into a monster child in two seconds flat, I realized so can I. Whether it is PMS or MS (put them both together and I can probably take on Godzilla), 99.9 of the time I am still cute and cuddly.

Thus, I now understand why the FB group is called Friends against the MonSter. The monster is our cute and cuddly selves under the influence of the insidious demon that is MS. Or, PMS. Or maybe like my nephew, our stubbornness at getting a diaper change when we are clearly not in the mood for a diaper change….

Post Scripts to this post

1. There are actually several great FB groups I belong to that can help people with MS have a forum to discuss living with chronic illness. The above mentioned is only one of them that I used for this blog because of the great name although it is also a great page. Please contact me if you would like more information about this group or others- [email protected]

 2. While all of the above is/was true, and this blog needed to be written, this was also a place where I could get away with showcasing pictures of some of my nephews. The first picture is Drew during one Halloween and the others are his firstborn.

 3. While I truly hope my blogs are helping others and that is my main and only goal, I still wouldn’t mind a WEGO award! Here is how to nominate me if you think I should be considered.

WEGO Health Activist Awards

 4. Thank you all!

Taffy Summer

This post is dedicated to all of my Cape Cod friends who are likely in the deep, deep throes of Augustitis. It’s ok my over worked, over heated, over tired, over questioned, over being run over friends- Labor Day will be here soon.

Candy

The stickiest job I ever held was at a candy store that made its own salt water taffy. (In case you are wondering, the salt water part is a myth- no we didn’t take beach pails across the street, collect the bay water and pour it in the taffy vat.)

This was my first real job at the legal age of 14 as opposed to the four not so real jobs I held before. Those jobs included selling shells (high end shells painted with nautical themes by my very artistic uncle), sweeping the sidewalk in front of one lovely storefront at the bottom of my street, and babysitting the three year old whose parents owned the store next door to the sweeping place. A job where I would watch the child in the backroom of the parents store or take her to the beach to build sandcastles as long as we didn’t go in the water past her knees.

The craziest job was during the summers when I was 12 and 13 and ran my family’s guesthouse. I would take strangers (often single men) up to their bedrooms in an empty home and give them the keys to the house. Luckily it was never a problem (oh, the bliss of the naivete in days of old.)

But I have been thinking of the candy store job a lot lately, and I am not sure why. Is it because no matter how clean the owners kept the place or how many inspections they passed, the floor of the backrooms were always covered in corn syrup?

That reminds me of how sticky I feel in this miserable humidity. In this damp sticky weather I am sticky as soon as I wake up. I am sticking to clothes, to chairs, and with my MS clumsiness, I am sticking to walls too.

The summers at the candy store I also stuck to everything. I easily ruined three pairs of shoes each season and those were the only times in my life where I actually followed my mom’s “take your shoes off as soon as you come in rule.” I would need to allow an extra five minutes to make it back to work from my lunch break as my shoes stuck to the sidewalk with each step and added precious extra seconds to my walk as I forcibly yanked my feet off the ground.

No wonder I turned out clumsy, MS or no MS.

This weather is making me stick everywhere and I am just a sticky, icky mess similar to the sticky mess I was at the candy store. Problem is, at least taffy is sweet. I am not feeling so sweet these days.

Maybe this job is on my mind as I am working so hard on my ‘get fit’ plan and those summers were the years when friendly tourists asked me how I stayed so skinny working in a candy store? It actually wasn’t that hard. Believe it or not you get sick of fudge easy when you smell it all day long and I never again want to even see taffy or corn syrup. Ah, but it is nice to remember that at one time people referred to me as “so skinny.”

Beachy Scene

Perhaps I am thinking of those busy summers as I suddenly realize that I used to love the season and the excitement the crowds, summer activities, and the hot weather brought. Not so much anymore. Now the crowds translate to noise which makes my ears hurt, much too long to get anywhere or do anything and dangerous road conditions. And the hot weather makes me want to move to the Artic.

Yes, that is it. That is why I am fondly pondering those years in the seventies. I am wondering how I survived and I don’t mean in the guesthouse business. No one in my world had ac in the eighties. We definitely didn’t have it at home and not only did the candy store not have it, the heat from the ovens and taffy machines jacked up the temperature. Yet I don’t remember suffering like this.

What is causing me to turn into an achy, sweaty, smelly mess as soon as the thermostat hits 82? Is it the extra lbs? Age? Global warming? MS?

Oh yes, MS affects everything, especially things that happen between June and September. I can fondly ponder all the memories I want. As long as I ponder them in an ac cooled room with a big glass of ice water and some time to rest. And no taffy anywhere!!

 

Want to make you August better? Remember to enter my 50 Shades of Green/Doing It Veggie Style Contest where you can win a prize on September 14th! You have until August 31st to enter. See the details of what you can win and contest guidelines on my 50 Shades of Green Blog Post.

Vegetables

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net

50 Shades of Green

Doing it Veggie Style

No this post is not about my love life. If it was, I would bore my readers to tears and I am trying to increase my hits, not bore people away.

This post is about the amazing thing I learned while I have been on this ‘get fit’ journey. Turns out, there are lots of ways to prepare and consume vegetables and not all of them are totally disgusting. Of course, the level of disgustingness in the veggies can depend a lot on how you prepare them and/or if you happen to be in one of your brain fogs at the time.

For example, I have mentioned here how excited I was to learn that kale is a new super veggie. I even put a picture of kale up on FB to share this new knowledge with others. The problem is, I am really only familiar with kale in Portuguese soup.

A friend sent me a recipe that sounded pretty good. It involved sauteing kale with vinegar and white wine and topping with parmesan cheese. That sounded easy enough and so I headed to the store for the ingredients.

Did you know that you can actually buy kale in a super big bag? Not that peeling kale leaves from the stem is that hard but MS’er’s like me like some shortcuts. Onto vinegar. Did you know that there are several different kinds of vinegar? What is that about? Isn’t vinegar just vinegar?

Anyway, I was bringing the kale in the house when the fog started to set in. I forged ahead with my veggie plan. Brain fog or no brain fog, I was getting healthy!

I dribbled some vinegar in a pan and then put a bunch of kale in the pan too. The best part of this recipe was the white wine so I opened the box I had and poured some into a cup. I really, really like wine and so I poured some more. All the wine went into the pan and I kept stirring the kale.

The liquid didn’t seem to absorb that much, so I kept sautéing. And then I sauteed some more. I wasn’t sure what the kale was supposed to look like and I was getting hungry and bored so after about twenty minutes of sauteing, I put the kale on a plate and topped with some parmesan.

It wasn’t good. I trusted my friend but was she in a brain fog when she sent me this recipe? What I had made was a soup; a rubbery kale, cheap wine soup. I am not wasteful, and am trying to stomach even horrible veggies, and so I forced myself to eat it.

The next day I opened my fridge and saw the big bag of kale. What now? Perhaps I should try again and maybe not cook the kale so long. And maybe I should just use a splash of wine. I made the recipe again. It was better but still not great.

With a clearer head on the third day, I looked at my box of wine and noticed that it was even cheaper than cheap. The box looked like a purse complete with a strap and all. That is pretty cheap. Perhaps that was the problem?

That night I used olive oil instead of the wine and vinegar combo and it was better. By the fourth night I was starting to get sick of kale but still had a lot left. The weather was much cooler and the brain much less foggier which is likely why I got the brilliant idea that I did.

This time, I sauteed the kale with olive oil, garlic and cannellini beans as beans are good for us MS’er’s. And before I knew it, I had eaten almost a whole bag of kale! I will try my friend’s recipe again as I still think it was probably a good one. I will just wait until I have good wine, like maybe one not in a box.

Next up is Montel William’s Broccoli Soup, the one where the picture on the recipe looks like there isn’t any broccoli in it. Wonder how come I still have to buy broccoli? Does anyone know how to buy broccoli? I have never done it before.

 The Contest

I NEED YOUR HELP! I am getting better and still have some Montel recipes to make but I am not sure that will get me totally over my veggie aversion. I have been told that there are more than 50 ways to prepare them. I need to know those ways!

If you know how to make veggies less disgusting and almost edible, then please enter my 50 Shades of Green/Doing It Veggie Style Contest! You could win $5000!

Doing It Veggie Style

Well, you could win $5000 if you also happen to buy a winning lottery ticket that day. I don’t actually have $5000 but if I did, there are some utility companies, insurance companies and a landlord who want it.

What you can win is a copy of the October 16th Release of Chicken Soup for the Soul: Finding My Faith book that includes a story by yours truly! Plus, I will autograph it for the winner and they will likely have it before the book’s official release date!

Now isn’t that better than money?  And that also means you don’t have to pay taxes on your prize!

Winner

In the interest of full disclosure I should mention that the story I wrote for the book is not about MS and isn’t at all funny. But it does show me during a cringe worthy moment in my life and has an uplifting ending.

Here is how the contest works. From now until midnight at 8/31, I will be collecting recipes through my website made using green veggies. Any type of veggie will do as long as it is green. No need to worry about my favorites, I am up for the challenge.

On 9/1 I will go through all the recipes and pick out five that don’t sound that horrible. I will make those five (I promise not to make them during one of my brain fog days). I will post the top five recipes and on 9/14 will announce the one that was less disgusting than the rest! At that point, I will contact the winner and get their prize out to them right away.

 50 Shades of Green/Doing It Veggie Style Contest Guidelines-

All recipes need to be submitted through the contact page on the www.yvonnedesousa.com website.

Everyone from everywhere is eligible to enter as long as they submit their recipe through the website.

Please enter at least 1 but no more than 3 recipes.

The recipes can include several veggies but a green veggie must be a part of it.

The top five recipes will be posted and if you don’t want your real name used, that is ok. But please give me something else to use like a nickname, a first name, an alias or your initials to use if I post your recipe. By entering the contest you allow me to post your recipe and some sort of name.

When you send me your recipe please include an email address to I can contact you and let you know if you have won.

You do not have to submit an original recipe but you bear the responsibility if you win and the person who gave you the recipe comes banging down your door looking for their free Chicken Soup book.

You understand that just because the book is called Chicken Soup for the Soul it does not mean there are chicken soup recipes in it.

Tips to help you win– I am willing to be adventurous but simple is good too. If an ingredient is really weird and not in my grocery store than I probably won’t pick that recipe.

Also,, I am not known for my cooking skills even when I am not having a brain fog day so a really involved recipe will probably not be one I am inclined to pick either; unless it happens to be a way to eat green veggies in combination with ice cream, cake and cookies. That one I would definitely pick even if it was 100 hundred different steps!

I hope you will consider entering www.yvonnedesousa.com ‘s first ever contest.

Thank you for helping me get healthy!

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net

The Star Wars Way

A Healthmaster Elite/Multiple Sclerosis ‘Get Fit’ Plan

So the Banana Peanut Smoothie was actually pretty good. It wasn’t as incredibly super delicious as say, a Cookie Dough Nor’easter (the Cape Cod version of a DQ Blizzard), but it was ok. Strangely, the recipe said it made four servings when it actually made ten. Why is that?

I think people who put together recipes and serving sizes have no idea that they are doing. It’s like when you open a container of something really good and the label says the container contains eight servings when it barely contains three, maybe four. Somebody is doing something wrong.

So while I did like the Banana Peanut Smoothie, it was a little too banana-ie/peanut-ie for me and I moved on to the next recipe I was bravely going to check out. But first, I noticed something really cool.

Before I tell you what that was, allow me to say that I truly appreciate the Healthmaster Elite way more than the Ancient Warrior blender thingy I had tried before. The Healthmaster comes in cool colors, is easier to use and much easier to clean. There is no removing of the blades in the Healthmaster so it is likely I will keep all of my fingers while using it.

strawberries

As I gathered the ingredients for my next smoothie, the Strawberry Banana Peanut Smoothie (I chose this one as I still had some of the ingredients hanging around and those bananas were just crying out to be used again), I really looked at my Healthmaster.

I noticed how much it resembled a robot. Then I grabbed this cool tool that comes with the Healthmaster Elite (and was badly needed and DID NOT come with the Ancient Warrior) called the Tamper. I don’t know why it is called the Tamper as it is really a smoothie maker’s lightsaber, used to duel the indredients of a smoothie into an actual smoothie.

Since I was really impressed with this tool, I couldn’t help noticing that the Healthmaster Elite kind of looked like one of R2-D2’s cousins. I don’t know why everything in that day’s smoothie making experiment was making me think of Star Wars. Perhaps it was because the last time I didn’t have to worry about my weight was when I saw the original Star Wars in 1977. Oh Obi-Wan, I could use your wisdom on my ‘get fit’ plan. Yes, I am fortunate to have Montel’s recipes but Obi-Wan could send in the Force.

Lightsaber

The Lightsaber/Tamper

The lightsaber fascination lead to actual exercise as I dashed around my living room fighting off imaginary Stormtroopers. Then it lead to even more exercise as I moved around the room again cleaning Strawberry Banana Peanut Smoothie off the walls. Perhaps next time I will play pretend Star Wars BEFORE actually using the lightsaber to make the smoothie.

Admit it- you want to do this!  You are making the lightsaber sound right now.

 

The point is, as silly as it might have been, I had fun and enjoyed my Star Wars smoothie maker more than ever. As for the Strawberry Banana Peanut Smoothie, it was really good. I know because the recipe said it made eight servings and I only came up with five and a half, the half being on my walls.

So my ‘get fit’ friends, take it from me. If it works for you as you are trying to get healthy, do it. If childhood memories cause you to fly around your house like an idiot, at least you are moving. If you, like me, have a plan I can only say to you, “may the force be with you!’

Image: FreeDigitalPhotos.net

 

Feelin Hot, Hot, Hot

Multiple Sclerosis and the Heat Wave

Sadistic SunAlert– this a Multiple Sclerosis Weather Advisory. We interrupt this ‘get fit’ plan blog post for a heat wave. It is highly recommended that all people with multiple sclerosis be advised, hide and take cover.

Based on the above, there was no work done on my new ‘get fit’ plan this past week. I didn’t fall back into my old ways, I just didn’t do anything but melt. And, in a world where life is cruel, melting does not translate into losing, at least not into losing inches, weight or fat. It just translates into being a sweaty, stinky, useless mess. The ‘get fit’ plan blog will resume next week. For any of you who may have been holding your breaths in anticipation, the Banana Peanut Smoothie was good.

I don’t mean to minimize the seriousness of the heat wave and drought that are affecting most of the country, but with the horrible weather I was a hurting, fatigued, miserable, useless mess. Call it a flare, a mini-flare, or an exacerbation (I can never tell those three apart) the bottom line is, I felt like crap.

But it got me thinking. Do you know how they say people with pets, often resemble their pets? A short, muscled tattooed guy with a shaved head and a leather jacket will have a pit bull named Spike. A sophisticated aloof elderly lady might have a snooty Siamese cat named Princess. A crazy lady might have a mangy, crazy cat named Hattie. Or, a rambunctious seven year old little boy might have an overly energetic beagle named Buddy?

Well, I don’t have pets but what was interesting, during the heat and humidity when I was so miserable, so were the two most needed machines in my life. It was like they felt that by being miserable in the heat like I was, we were bonding and growing even closer.

Let’s start with my laptop. When I was barely moving, my computer became very s-l-o-w- as well. When I would try to pull up a website it would take forever, as if it just couldn’t muster the energy. I would eventually get into a site and then it would just freeze. I could almost see it telling me, “Yvonne it is so hot and I am so tired, let’s just rest….”

The computer brain slowed down as well and all of a sudden it forgot logins and passwords it had known forever. I could totally relate. In the heat I couldn’t remember anything either, my poor computer.

The real surprise however was how my AC started acting like me as well. On an unusually hot day in early June I went to turn on my little portable ac and it flashed numbers at me instead of cold air. After digging out the instruction manual and trying to understand the Greek it was written in, well, not really Greek, it seemed like Greek, I had to call the company.

They told me that my ac had a small bladder (oops, I mean basin) and on hot days had to be emptied regularly. With sweat pouring off of me, the company walked me through the annoying process of draining the unit.

Then the heat wave hit. In the middle of the night I got up to start one of my twenty evening trips to the restroom. My ac had shut off. It seemed that it needed to relieve itself of extra water as well. I went to the bathroom and when I felt better, I emptied the ac.

Middle of the night

One hour and 15 mins later, up to the restroom again. As I came back into the bedroom, the ac stopped. Again I emptied the basin. First thing in the am, both the ac and I could barely make it before we burst.

I know there are adult diapers but that is too gross. I would not be opposed to ac diapers though- how come they don’t exist? The manual did say you could use the little hose thing that came with the unit to continuously drain it but when I tried, my ac had an accident that lead to it’s emptying itself all over my bedroom floor.

Restroom

For days this went on. With the heat, I needed to drink extra water which meant I needed to be in the bathroom even more frequently than I thought possible. Feeling left out, my ac began to whine that it needed to be emptied as well. The flashing code seemed to be saying “wait Yvonne, I need to pee too!” So I would change it and we would rest. Forty five minutes would pass, repeat.

I have threatened this before, but with the horrible heat I was about to grab a book and a pillow and push and pull myself and my ac into the bathroom permanently. Luckily, the heat finally passed. Since that day, we are all happy and feeling much better, in or out of the bathroom.

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net

Image: FreeDigitalPhotos.net

 

Newborn Steps

Taking Control of a Long Neglected MS Body

Tiny Baby Feet

Yes, I know that newborns don’t step anywhere and that the actual expression is ‘baby steps’. But I recently spent some time with 13 month old twins and those babies could move! I worried that even baby steps would be too much for me to start my new ‘get fit’ routine.

It began with Montel William’s HealthMaster Elite arriving in a big box and landing at my front door. Step 1- I brought the box inside. Company was due to arrive soon, so I did the sensible thing and moved the box into a corner in the spare room.

Please don’t think I was ungrateful. I was very excited about my HealthMaster. But whether it is MS, or me being me, everything, even gifts can sometimes be overwhelming. As I have learned to do with many things that do not put me in the best light, I am going to blame MS.

Garden Fresh Collection

Days after the company left, I proceeded onto Step 2. I opened the box, and, because I was feeling encouraged that day, I pulled out the Living Well Garden Recipe Collection Binder and actually looked at the recipes (steps 3 and 4). Some of them looked really good. There was even a recipe for broccoli soup that looked like it didn’t even have any broccoli in it-how great would that be?!

Then I started to wimp out. It is summer, the time of ice cream, frozen alcoholic beverages and fried foods, how can I start a ‘get fit’ plan in the summer? Plus, I do like soup and the soup recipes look delish so why not wait until September and focus on the plan by just eating soup?

I’m not a total health waste case. I had quit smoking before my diagnosis over two years ago and now just bummed the occasional cigarette. When my sister Audrey visited for two weeks in June, I only bummed one off of her and that was after a mini family crisis. See, I can be healthy.

Plus, when I turned on my WiiFit with the idea of starting to workout regularly, I didn’t argue with it when it told me it had been 23 days since I last used it. I debate its count but have decided that the best relationships aren’t built on arguing, so I let it go.

After only two exercises the Wii told me that it was ok to give my body a little rest if I started to feel tired. I always feel tired, that was the point of doing the Wii. I didn’t give in to its permission and continued to work out.

So back to analyzing whether I really needed to start this plan now, at the beginning of one of the hottest July’s I can remember. But then I started thinking about how tired I was blowing bubbles with Lexi during her visit. Or, about the televison interview I had given recently (shameless self promotion-check it out-   http://www.provincetowntv.org/category/weekly-shows/bridging-the-gap/   )    that featured a dynamic young woman with a lot of positive things to say but who carried an extra sixty lbs. Who was that lady? It couldn’t be me! Yes, I know the camera adds 50 lbs but where did the extra ten come from?

I would start now! Step 5- pick a recipe and buy the ingredients. I picked the Banana Peanut Smoothie as I didn’t want to start with anything too hardcore and it reminded me of Elvis, who loved banana peanut butter sandwiches and who’s eating and fitness routine I have always admired. No wait, it was his singing I admired, that’s right. I always confuse those two.

Elvis Snack

Step 6-watch the HealthMaster video as I wanted to do everything right and wanted to prolong the actual work as much as possible. Step 7- clean the unit before its first use. Step 8- make the smoothie.

Step 9-Enjoy!

 

Follow my progress with my next post on 7/20/12.

Image: FreeDigitalPhotos.net