Wednesday, October 27, 2010

Saturday with the Boys

My nephew Adler came to visit on Saturday. He, Sammy, and I decided to have to have some fun.

First, we collected pine cones and then went down to the creek to throw them in.


Then, with Grandma's help, they made ghosts for the halloween ghost tree.


Adler climbed the ghost tree



  
Before AND after lunch, we went 'splorin' through the woods.


 

Before dinner, the boys collected leaves, sticks, and pine cones for a little fire. When the fire started to die out, they'd go get more. Certain sections of the yard are now pristine!


I couldn't let the day pass without taking a picture of me with 2 of my 3 favorite boys. (Adler, on the left, will be five at the end of November. Sammy, on the right, will be 3-1/2 on Christmas.)





Sunday, October 24, 2010

6 Month MRI

Friday was that time of the year again. Time to have an MRI.

In July 2008, I switched MS drug therapies. I now take Tysabri, a once-a-month IV, and I'm very happy with it. But it does have it's draw backs. Tysabri is an immunosuppressant, an the largest risk of taking it is contracting PML, a potentially lethal brain infection. While the chance of getting PML is relatively small, it's higher than the general population. The only way to monitor it is through MRI's. So I have one every six months.

The Results: No change. I saw the pictures myself. A bit depressing because I was hoping my body would have at least started healing the existing lesions by now. BUT the good news is that there are no new lesions and there haven't been since I've been on the big T. I can't complain really, because I can still function. I don't have any pain. I don't get too exhausted. There are some limitations, but overall, I'm doing good.

Because I'm doing so well, my Neuro and I talked about increasing the time between Tysabri infusions from once a month to every other month. Tysabri is the most powerful MS medication currently available. Because it's so strong, they're trying to determine if reducing the the number of infusions in those who are doing well will still allow the meds to offer protection while reducing the risk of PML. This decision will, of course, take into consideration the newest recommendations based on the most recent research. So we'll see if there are any changes in protocols over the next six months.  We may also change the frequency of my MRI's from every 6 months to once year depending, again, on the potential to get PML based on the newest research.

I'm now "participating" in a study to see if there's a link between having been exposed to the JVC virus (which causes PML) and getting the disease. I say "participating" because it's only a blood draw once a year for three years. But I hope it helps.

I also talked to my Neuro about the new MS pill that was recently approved. I like to keep on top of what's going on with MS. As excited as I am about the advances that are being made, the side effects of this new med is a reason for me to hold off (even thought I have no desire to switch drugs). I mean, if the first time you take the pill, you have to do it in the doctor's office so they can monitor you for SIX hours, well, the risk vs. reward seems a bit skewed to one side.

We also talked about stem cell research, but I think I'll post that discussion in another post. This one has gone on long enough.

Thursday, October 21, 2010

Bedtime Stories

Tonight's bedtime stories were brought to you by:


We just barely made it through GREEN EGGS & HAM. It was a bit too long for a 3 year old with a short attention span. I'll keep trying, though. We've got to read the classics :)


THE MONSTER AT THE END OF THIS BOOK was a favorite tonight. I reread the whole book three times, and the first 3-5 pages I reread a kajillion times (yes, that's an actual number...because I say so.) 

   

When we got to pages 2-3, Sammy would put his finger to his lips and say "Shhhhhhhhhh", then I'd whisper Grover's part. He'd turn the page. I'd exaggerate Grover's reaction, and he'd cackle with laughter. After making "a terrible mess" on a few pages, Sammy'd lean in to Grover and say, "I'm sorry" very sincerely, but then he'd turn the page :)  My favorite words tonight: "Can we read that again."


Another favorite. When I first started reading WHERE THE WILD THINGS ARE to him, I'd act out "they roared their terrible roars and gnashed their terrible teeth and rolled their terrible eyes and showed their terrible claws." Now I have to do that whenever I read it, but Sammy joins in too. It's so funny to see him gnashing his teeth and rolling his eyes.


Yet another favorite. THE POLAR EXPRESS is almost always the first book I'm requested to read at night, and tonight it was also the last. Sammy was into the "polar choo choo" movie big time last Christmas. He know's it inside and out, and tonight he kept asking, "Where's the girl?" (who's in the movie but not the book). But he still loves the book.


We also read THE GIANT JAM SANDWICH, a book I liked as a kid. I think he likes it because when I'm reading, my hand turns into a bee that flies around him. He grabs my hand and says, "I've got your bumble bee". He also points to different people on a page and asks, "What's they saying?" and I have to make up something in a funny voice.

WOW, that's a lot of reading in one night.

Tuesday, October 19, 2010

Always Together

Today Sammy asked me and Mom, "Can we be friends forever so we can always be together."

I just adore this kid.

A Halloween Card

Sammy received a card in the mail today for Halloween. He opened it up, looked at the picture, and said "Wow, it's for trick-or-treating!" When asked what it says on the inside, he said, "It says I'm supposed to go trick-or-treating tonight and put on my Iron Man costume." I think he's excited for Halloween.

Saturday, October 16, 2010

IF I STAY

If I Stay (If I Stay, #1)Book: IF I STAY by Gayle Forman

Format: Soft Cover (238 pages)
Series: #1 in a series
Genre: Young Adult

Language: Strong curse words used sparingly
Sex: One sex scene, mildly descriptive, not explicit
Violence: none
Themes: family, loss, death, making difficult decisions

Point of View: 1st Person, Mia
Summary: Mia and her family are driving when they're in an accident. Everyone except Mia is killed, who must make a choice between living and dying.

Told from the perspective of a disembodied Mia, I enjoyed how new characters were introduced and relationships developed through flash backs interwoven into her current timeline the hospital. The themese opens up a lot of questions, allowing for good discussion...Is there a heaven? (where did her family go?)...What would I decide if I had to chose between dying or living in these circumstances?...Would the possibility that I might have to cope with physical or mental handicaps because of the accident affect my decision?...Would I have guilt that I survived?...Could I recover from the emotional turmoil of losing those who are the most dear to me all at once?  There's also the non-existential question of would I chose to give up a dream for a boy I loved?

The author did a good job of making the characters real even though they were stereotypical. There's also a sex scene that's really cheesy.  These flaws aside, I fell in love with this family, and I could feel Mia's loss because I grew attached to them and could picture them in my mind. I didn't feel emotionally manipulated or hit over the head with "FEEL SAD HERE" experiences. It wasn't written with a heavy hand. It was very easy to read, a compliment to Ms. Foreman given the many directions this type of book could taken.

I recommend this book. It's worth reading at least once, and I will probably read it again 1-2 more times in the next few years. If I choose to buy it, it will be in paperback, but I'll most likely just check it out from the library when I want to read it again. I'd happily lend this book for others to read.

Originally Published: April 2009
Read: October 2010

You can find this and other reviews for If I Stay at goodreads.com

Friday, October 15, 2010

The Spoon Theory

There's a woman named Christine Miserandino. She has Lupus. She came up with The Spoon Theory to explain to people what's it's like to live with a disability or chronic illness. Her website is www.butyoudontlooksick.com.

The Spoon Theory explains what it's like to have to prioritize and choose which activities you do during the day and which ones you exclude because sometimes the simple things take up more than their fair share of energy when you have little energy to spare and more pain and immobility than others.

While I have to watch what I do, on a scale of 1-10, I'm a 2. I'm lucky. I don't have (yet) a lot of the issues that many of my friends with MS have. The Spoon Theory applies to everyone who has some sort of physical difficulty. Some of us just start off the day with more spoons than others.

Wednesday, October 13, 2010

The Lesser of Two Evils

We're trying to teach Sammy to clean up his toys. He's 3 years old. He's old enough to clean up after himself, but he's also at the age where he doesn't have the will power to do it by himself. So we offer to clean up with him. That works sometimes. And then there are times like tonight.

Sammy made a HUGE mess in his playroom today. After refusing to pick up his toys, he was given the option to clean up or go to bed early. He chose to go to bed early. When he realized he really was going to have to go to bed, he started crying. It's a tactic he uses to get out of doing something he doesn't want to do. It didn't work.

My brother (Sam) let's Sammy watch TV as he's going to sleep. After the crying ended, Sammy hopped into bed and asked to watch Avatar the Air Bender. BUT Sammy's punishment didn't end with going to bed 30 minutes early. Instead of putting on a cartoon, Sam turned on his "Adobe Photoshop Tutorial" video. Sammy was again given an option: help clean up his toys or watch the video while going to bed. He chose the lesser of two evils. He chose to watch the Adobe tutorial.

Yep, he's going to be a tough nut to crack. Wish us luck.

Nine Years Ago

Nine years ago this evening, I said "I do" with a man I thought I'd still be married to today. Before 10/13/01, we were together for five years. We've been separated for three years now. For no good reason, I haven't filed for divorce yet. I keep giving excuses. The most prevalent excuse is "I don't have the time to see my lawyer. I'll do it later." There's that word again. Later. I'm beginning to dislike that word very much.

I don't want to be tied to him any more. I don't love him any more. I don't talk to him any more. So why am I hesitating moving forward? I have no reason. All I know is that I need to give myself a good, swift kick in the rear and call my lawyer. I just need to take the first step. There's nothing to be scared of, right?

Tuesday, October 12, 2010

Later

In my effort to simplify, I'm s l o w l y going through the stuff in my house, giving away what can be reused as is, recycling what can be reused in a different form, and throwing away crap that should never be used again. I've found that I hold on to things so I can read them later or to remind me to do something later or to repair it later or to take it to Goodwill later or to organize it later. Later later later. I'm not liking this "later" pattern that's emerging. I knew I was a procrastinator, but it's worse than I thought. I have A LOT of stuff to go through.

I do this on twitter too. I favorite tweets to read later. I currently have 798 favorites. Seriously. I need to stop focusing on later. I need to follow up on my favorites and my to-do lists and my piles of papers to go through. I need to focus on now and, more importantly, the future.

I'm making my New Year's Resolution right now. It's early, but every day is a new day after all. It's never too early to make a change for the better. My new mantra is "I will take care of it now and I will follow through."

Saturday, October 9, 2010

The Universe is Awesome

This site is absolutely amazing:  UDF SkyWalker

The Ultra Deep Field obtained by the Hubble Space Telescope is the deepest view into the sky by humankind to date. The 10,000 galaxies that are visible have distances out to times where the universe was just 800 million years old, one seventeenth of its current age.

If you move the green circle to a dark area of the sky, it's astounding how many unseen galaxies appear. Or if you put it on one of the brightest "stars," the detail of some of the galaxies is breath taking.



If you're bored

Draw lines to change the course of th dropping balls: http://balldroppings.com/js/

Tuesday, October 5, 2010

My Reading List for October

BOUND BOOKS (I read these at home)
The Sweetness at the Bottom of the Pie by Alan Bradley
Room by Emma Donaghue
Up From Slavery by Booker T. Washington
I Am the Messenger by Markus Zusak
The Westing Game by Ellen Raskin
Sex Dungeon for Sale by Patrick Wensink

AUDIO BOOKS (I listen to these at work or in the car)
All the Presidents Men by Carl Bernstein and Bob Woodward
A Visit from the Goon Squad by Jennifer Eagan
One Day by David Nicholls

eBOOKS (I read these at lunch or when I'm waiting at the doctor's office)
Mercury Falls by Robert Kroese


Top Ten Tuesday

My Top 10 Movies
(in no particular order)

1. Star Trek (2009)
2. Guess Who's Coming to Dinner
3. Singing in the Rain
4. Casablanca
5. Princess Bride
6. Now Voyager
7. Overboard (guilty pleasure)
8. Harry Potter (all of them)
9. Gigi
10. Star Wars (the originals)

Honorable Mentions
* High Society
* White Christmas
* Sliding Doors

I reserve the right to modify this list as I think of new movies :)

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Monday, October 4, 2010

The First 45 Days

For my 36th birthday, I started taking a picture a day. I actually started about two weeks before my birthday to get into the habit, but the project actually started on Sept. 4.

Here is a video of the first 45 pics (14 pre-pics, 31 project pics). You get to see me with make-up and without make-up, fixed hair and flat hair, tired and awake, late at night and early in the morning. You get to see me.

video

Sunday, October 3, 2010

Two Sammies

While we were driving around on Saturday, Sammy (3) said: "If Daddy was my age, I could carry him on my back. Then there'd be two Sammies, and we could grow up together."