Tag Archives: yvonnedesousa.com

MS Insanity Galore

A multiple sclerosis contest and some multiple sclerosis advice

*******Contest*******

I’m starting this holiday month and this week’s blog off with my latest contest friends!!! I promise as long as there are entries, there will be at least one winner!

The idea behind this contest is to get everyone excited for the February release of my book MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis.

The first place winner of this month’s contest will receive a $25 Amazon gift card as well as an autographed copy of MS Madness. The next five people who answer somewhat correctly will each receive a free ebook of MS Madness.

Please enter by sending me a private message either through the contact section of my website, or by liking my yvonnedesousa.com Facebook page and then sending me a private message there. The first accurate answers will win.

Please send in your answer no later than midnight on 12/26/13. The winner will be announced in my 12/27/13 blog.

******Question******

So here is the question for the December contest-

I open MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis with two different quotes about the importance of smiling and good humor from two very different sources. What are those sources?

******Hint******

One source is the Bible and the other is a song from my favorite band. The most accurate answer will include a book of the bible and a song title. If no one gets both, the first person to guess one or the other will win.

Good luck everyone! And now for today’s blog-

It is a repeat but as I hang out on MS social media sites, it seems like this issue is relevant for many and may be worth a second read.

******Blog******

2013 started in my world with two afternoons of MRI’s, my fifth set since my body started tingling all over, and not in a good way.

You would think that having previously undergone four MRI’s in a three year period, I would know what to expect. And since I am generally not claustrophobic, the process wouldn’t be that horrible. But each time I walk in, I have completely forgotten lessons learned in the past and it is like I am having this test for the first time.

This year, however, I got smart and thought to write down the things I learned so that I will be better prepared for the sixth MRI series. And since I will forget where I put this list, I am publishing it here so that maybe some of you can remind me of these lessons when I need them. Feel free to adopt any of these yourself if you are about to be shot down the tube.

The technologists will tell you that MRI is an abbreviation for Magnetic Resonance Imaging. They are lying.

MRI is actually short for “Major Radioactive Insanity.”

Major, because while there really isn’t any pain involved, while you are stuck in the tube it feels like a really big deal.

And do not let the technologists tell you any different, there is some sort of radioactivity involved.

If there wasn’t, why would you have to wait for the green sign to light up before you enter the room? The way the technologists freak out if you step just a little too closely to the door while the light is red, there has got to be some type of radio something or other going on.

Radioactivity, radio frequency, Sirrus satellite radio, whatever. It is radio something and it is serious.

And insanity? Yes, what goes through your mind while you are in there is nothing if not insane.

Ladies, you cannot wear a bra. Even if you know for sure that there is no metal anywhere in or on your bra, there is, somewhere. The little hooks or the synthetic material of a sports bra have microscopic bits of metal in them.

Even if you happen to be a 34A and wearing a light cotton/lace thingy with mesh hooks, you need to take it off; if only out of respect for those of us who must wear underwire over the shoulder boulder holders.

Go to the bathroom before starting the test. Once beginning the test, keep reminding yourself you do not need to pee again. You really don’t. It is just part of the insanity, this bladder mirage.

If you panic that maybe the technologists have forgotten you in the machine and left for the day, don’t push the panic button to check. It will only delay the time you are stuck there and really, really annoy them. And trust me; you don’t want the technologists annoyed with you until after the MRI is over.

If you get super bored, don’t push the panic button just for something to do. They don’t like that either.

If you think you might seriously panic about being stranded (this particular panic occurs to me during the brain MRI when they actually have to lock my head into the MRI vise), then take their car keys and lock them in your assigned locker.

You won’t be able to take the locker key into the tube with you (its metal), but you can hide it somewhere in the outer room and then kill the time in the tube trying to remember where you hid the key.

At least it will be hidden from the techs so that they can’t leave until they bring you out and you have all searched for the locker key you so carefully hid.

If, while your brain rambles during the test, you get a sudden desire to reach out to an ex-boyfriend, ex- boss, ex- party buddy, ex- friend, or ex- roommate, don’t do it as soon as you get your phone back. This is another MRI mirage.

If contacting your ex anything wasn’t a good idea before you went into the tube, it is DEFINITELY not a good idea once you get out.

If your doctor orders something called “contrast,” at some point the technologist will slide you out of the machine and inject ink into your body. This does not mean that later in the day you will spit, sweat, pee or cry pretty colors, which is a total bummer. I hoped to create my own MRI/MS Rorschach print.

Damn, you just can’t have any fun with MS.

Speaking of bodily fluids, you still don’t have to pee. Well, ok, by now you probably do. Try to ignore this fact. You won’t be able to ignore it but trying to will at least give you something else to do until the test is over.

The MRI takes five hours. It doesn’t really, but if you think that it does before you go in, the actual time it takes will be a little more bearable.

You will be able to keep your socks on. If you choose to do this, make sure your socks have non skid, gripper soles, they kind the put on little kids feet pajamas. If you don’t, when you are finally free to go you may likely be so excited to get out of there that your socks slip, causing you to slide across the floor, bang your head on the table you just go off of, and have to repeat the whole process all over again to see what damage you have just caused your brain in your excitement to get off the table.

At least the base line tests will already be done.

(So, no, I didn’t actually hit my head on the table when I slid across the floor. But I came close and MUST remember feetie socks next time.)

Finally, the biggest MRI lesson is that if the technologist gives you a disc to take to your doctor, never, ever look at it without your doctor present.

If you do, you will be convinced that you have the spine of a frog, and the brain of Frankenstein which will cause you to enter into a state of depression the whole week until your appt where your doctor will tell you that what you were actually looking at was an old Rorschach test you happened to have hanging around your disc drive.

Happy insanity, ooops, I mean imaging, everyone.

 

 

 

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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Illustration by Sebastian Frances-Burnell

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