Tag Archives: jack osbourne

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!!!

 

 

 

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!

 

 

Things That Go Ouch In The Night

MS weirdness, MS dancing, MS news and a favor

 

If you are like me, then you are used to unexplainable MS aches, pains, and strains. There are so many that I have stopped trying to count. And I have definitely stopped trying to figure out what causes them.

I just take one (or two,) Aleve tablets (my personal favorite of the over the counter meds,) and try to move on, perhaps whinnying or complaining if I also happen to be super grouchy that day. (Please see my prior post about mood swings titled, Call Me Oscar.)

And, so you don’t worry, I will tell you that I do know relying on Aleve is bad for your tummy; hence why I have prescription heartburn medicine that I take along with it. (Why isn’t it called tummyburn?)

 

That’s the way MS rolls; one drug takes care of one symptom but causes another, and so you take another drug to combat that symptom and so on and so on and so on…

But back to the aches, pains, and strains. I am more fortunate than some of my other MS friends in that the pain MS throws at me isn’t too terribly horrible. But because it is MS, it insists on being weird.

 

Just so my brain doesn’t get too complacent, multiple sclerosis decided to toss something new in the mix, just to shake things up. For the last several nights, when I wake up for one of my many, many middle of the night trips to the bathroom, I awake filled with all kinds of aches, pains, and strains. Stabbing sensations in my legs, throbbing feet, headache, sore throat, brutal ear aches- in both ears no less- or any combination thereof.

I tell myself that this is not MS. I must be coming down with something (virus, cold, fever, infection, malaise, etc.) and in the morning I will make an appointment to see my doctor. And, also luckily for me, MS fatigue overtakes MS weirdness and I fall back to sleep.

 

When I wake up in the morning, I (of course,) run to the bathroom again. I take my thyroid pill, (a whole separate diagnosis, a whole separate drug issue,) and since I can’t eat or drink for 30 minutes afterwards, I go back to bed. In that time the aches, pains, and strains seem to go away. I become convinced I dreamt the whole body of issues. Too often the headaches stick around and I will take my Aleve, but otherwise, the virus seems to be gone.

This has been going on for several days. I’m a pretty intense dreamer- am I dreaming the whole thing? Does the dream me have an ear infection or strep throat but the awake me is healthy?

Is it a mix- are some of the symptoms MS related and the others viral? But I am on an anti-viral medication (for fatigue-figure THAT one out,) so how does that work? Do my meds run out in the middle of the night and that is why everything comes at me then? If so, how come this just started recently when I have been on all of this same stuff for years?

 

Since it happens at night, and night is when the monsters come out, is this just a medical monster mash designed to help me get ready for Halloween?

You might suggest I visit a doctor to discuss this but how can I go see a doctor when by morning I don’t have any symptoms for him to look at? Am I going crazy? How else can I explain this latest weirdness?

Oh wait, that answer I’ve got. If it’s medical and it’s weird, it must be multiple sclerosis….

 

On to DWTS– what an incredibly beautiful and emotional night it was. I have been a fan long before Jack Osbourne joined the cast and I think this night of the stars recounting their most memorable years was the best ever. But Jack discussing his MS diagnosis only 2 and a half weeks after his daughter was born was beyond touching. His raw emotions as a father combined with his fears for his future health brought the ballroom to tears. He then danced a flawless waltz.

I was so moved I almost forgot to vote. Luckily, I came to my senses and managed to get my votes in!

 

Memorable MS quotes of the evening-

“If you don’t have bad, then you can’t appreciate the good,” Jack.

“Your hand sort of goes in a peculiar way,” Len.

“You even managed to get your bum under control,” Bruno.

Vote for Jack Osbourne 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.

Now for the big news, followed by a big favor! It’s official, the title for my upcoming book is-

MS Madness!

A Giggle More, Cry Less Story of Multiple Sclerosis

It is scheduled to be released in February 2014, just in time for National Multiple Sclerosis Awareness Month! I can’t wait to share with all of you the story of the several months before my diagnosis and the year that followed, a story told with honesty, frustration, inspiration and, of course, my own unusual sense of humor.

If you haven’t done so already, please consider liking my professional page on Facebook, Yvonne deSousa.com where I will regularly post status on the release date, preorder information, book signings and a contest!

Thank you all for your amazing support!