Happy Anniversary to My MS

It's Labor Day Weekend. To most people, this is the unofficial end to summer or just another 3-day holiday weekend. To me, it's the one-year anniversary of when I was diagnosed with MS.

Yesterday, the kids and I went for a ride on the bike path near our house that runs from Milton to Dorchester. Well, they rode. I walked so I could be available to help Zane with his new training-wheeled big-boy bike. There was one spill and one tantrum but we had a lot of fun.

Last night, we went to Ken's house for dinner and to bid Alli farewell as she headed back to college. I brought her a shopping bag full of non-perishables to curb the hunger if/when she ran out of money for food. Alli is a very smart young woman and I am really glad the kids and I know her. Matt is going to miss her like crazy...not that he'd admit it. Brothers are so funny.

Today, we spent time at two beaches. There were two tantrums (one was mine), lots of sunshine, climbing on the rocks during high tide at Nantasket, and collecting weird-shaped stones at Wollaston Beach.

While we were out, I left homegrown tomatoes from my landlord cooking in the crock pot with broth and herbs. When we got home, the kids showered and I made a great dinner with ground turkey, broccoli, pasta, and my sauce (or gravy as Tim and other East Boston natives like to call it). After dinner, we watched Chitty Chitty Bang Bang which was a hoot and a half for me. I think I was Ruby's age the last time I saw the movie. Ruby couldn't get over how everyone rode in the car with no seat belts. Zane liked the singing, although he did think they said "farting friend" instead of "fendered friend" in the title theme song.

Then it was jammies and bedtime. I read Miss Bindergarten Gets Ready for Kindergarten to Zane and the last chapter of Harry Potter and The Sorcerer's Stone to Ruby. They're asleep now and I'm watching TV...and remembering.

I tell people all the time about what a gift MS has been in my life. Most of the time, I'm not lying. My writing has taken off, I know how to take care of myself like never before, I made some major changes in my life that are all positive (namely my work and living situation), and I mostly focus on just the one day I'm living right now.

But I also grieve. I miss my freakish strength. I grieve the loss of my perceived invincibility. I miss my seemingly boundless energy.

I miss pre-MS me.

But she's gone.

Now, I'm Julie with MS. Lazy Julie. Julie who would love to have time to take a nap every day. Julie who is going to finish my book proposal by the end of the year and then find an agent and then get my book published. Julie who has MS but also has dreams, goals, talents, and a sense of humor. Julie who is still going to rock the world.

It's been a year. It feels like yesterday. It feels like forever.

Superman can fly around the world backwards to turn back time!

Don't you wish you could unsend email? Especially when you send an email with a blog link to someone who you would rather not invite to read your blog. Yes, the blog is public. Yes, I am all out there and don't choose to control who can access the blog. But, then again, I don't personally invite EVERYONE to visit, either.

While we are wishing to change the past, don't you wish we had a "retract" function on words that we speak? Restraint of tongue, pen, and the send button. Hmmmm.

Kidless, Guilty, Jealous, and Lazy

Ruby and Zane go on vacation with their dad for one week a year. Sort of.

They left this morning and Zane will be back next Friday. Because Ruby starts school on Wednesday, she'll come home Tuesday so she can spend the night in her own bed and have me take her to her new school the first day. I still haven't heard back from Mr. X about whether or not he plans to pick her up from school the first day and take her to school the next day so I have no idea if her break from the Daddy-cation will be one day, two days, or more. Zane's first day of Kindergarten isn't until after Labor Day. I'm starting to feel a little teary about my former preemie starting school but that's another post.

The kids are thrilled to be going on Daddy-cation which will include visiting their Aunt and Uncle's house in Ogunquit, Maine and taking a day trip to Water Country.

I love that they are going to have such a fun time. I love that they get to do things like Water Country. I know that I am NOT competing with Mr. X, which is a very good thing. 'Cause I would probably lose. I do fun things with the kids (we built castles and tunnels at the beach just yesterday), but I don't have the budget for expensive theme parks. I am also the one who is responsible for day-to-day discipline and molding of appropriate behavior which means I don't always say "yes" to the ice cream or allow temper tantrums. In other words, I am ALMOST ALWAYS the bad cop.

I love Ruby and Zane very much and anyone who knows me can confirm that they are the most important people in my life. I would gladly block them from a bus or a bullet (if they were careening toward them, that is--I'm not suicidal).

I also know that Ruby and Zane love me. I'm Mommy. I'm always there, no matter what. But I am probably not the one who will take them to Disney for the first time (or at all) and I read price tags before I say "yes" to almost any purchase.

I yell more than I would like and more than I should but I always apologize, confess to a committee member, and try to come up with strategies to avoid the same reaction next time.

I try to be a good mom every day but some days I do better than others. Today, being a good mom meant packing them to leave for a week and kissing them goodbye. And now, I'm taking care of ME which apparently means saving spoons by watching HGTV and writing before I go to a meeting and to sleep over at Bald Hot Ken's Love Palace.

Emerging from Invisibility

I'm had a very, very busy couple of weeks with work, kids, staying up way too late playing scrabble (er....Wordsmith now that Hasbro won the legal pissing contest on Facebook) , and I'm not quite sure what else that's kept me away from writing. I'm also setting up a blog at work so that may have taken up all my blog mojo.

So, here I am with so many things to say that I don't know what to say first. Maybe I'll follow the example of my old co-worker Jason who writes blog posts about what he wants to write about just to get the ideas down for future reference.

• I want to write about a guy named Randy Pausch, a computer science professor at Carnegie Mellon University, who decided to help as many people as possible, fulfill their childhood dreams before he died of terminal pancreatic cancer. He had a great line in his Last Lecture about choosing to be a Tigger or an Eeyore. I am most definitely a Tigger.
  
• I want to write about how scared I feel whenever I see an older woman walking with a cane or a walker and how I have to fight the urge to go up and ask her if she has MS.
• I want to write about how all my New Year's resolutions have gone to shit and how I'm eating sugar on a regular basis, occasionally putting Splenda in my iced coffee, eating red meat and pork every now and then, not doing yoga or any exercise (except if you count athletic sex), "forgetting" to take my shots, and staying up way too late on a regular basis. What's that about and how the heck to I get on the beam? I'm thinking I can get a jump start this week when the kids will be vacationing with their dad. Well, part of the week anyway but I'm not wasting a bullet on him.
• I want to write about how I wish I could be a full-time freelance writer who can work outside on a laptop, take Wordscrapter breaks, and take a nap in the middle of the afternoon.
  
• I want to write about why some people stay sober and others don't and why I have been the former even when I do almost everything wrong.
• I want to write about anger and how I seem to express it a lot in a less-than-mature way to my 9 going on 19-year old who is DEFINITELY on the brink of puberty. I'm a pacifist and I do NOT hit my kids but I yell way too much and lately I'm swearing while yelling sometimes. I really, really don't want to repeat the pattern I had with my own mother. She and I are...well, let's just say, if I was famous, the National Enquirer would do a spread on Lazy Julie's own personal Mommy Dearest. I know Ruby and I do NOT have that relationship and I am NOT my mother. As I write this, Ruby is hugging my arm while we watch the Cheetah Girl movie on Disney. It's actually pretty good, too, since it was filmed in India, which is a place I really, really want to visit. Zane is with us on the couch in our new family room, picking his nose whenever I look away. I am a good mom but I am not perfect...for sure.
  

Speaking of the movie. It's intermission and time for me to make microwave popcorn for my hugger and nose-picker now. Peace out. For those who miss me when I'm MIA, thanks. It's nice to know people notice when I'm not around.

A Real Estate Limerick

I once bought a condo, expensive and small
With a 70s lobby and green rugs in the hall
Retired old couples lounged by the pool.
My kids and I struggled with all the rules.
No floats in the water, don't walk on the grass.
We tried to keep quiet but I felt like an ass.
They were just kids who wanted to play.
I hated the laundry so far away.
But I owned my space with the adjust rate loans
The rooms stayed small but the payments all rose.
I hit rock bottom and sought professional advice.
The pro examined my budget and said "no dice."
I paid too much for housing and had to get out.
I wrote to my lenders and felt like a lout.
The market had tanked but Ken listed it for sale
I owed more than it was worth but needed to bail.
We lowered the price and the offers came in.
But the lender threatened foreclosure and refused to give in.
Negotiations fell through and then came back to life.
Lawyers got greedy and caused so much strife
But I let it all go and the closing went through
I breathe easier now and feel grateful, too.
I'm a happy renter learning how to make the right choice.
Spend and sign wisely and listen to my inner voice.
Housing crisis stories are in the news every day.
I hope that the unscrupulous brokers will all go away.
I take responsibility for my role in this mess.
But are the root industry issues really being addressed?

Invisibility

It appears that invisibility is in sight. Pun intended. Check it out.

So, what would you do if you could be invisible?

I think I would go to wherever the ballots are counted in November to make sure that Barack is the winner. Don't get me wrong. I think he will win fair and square but JUST IN CASE we are screwed by that whole electoral college crap again, I would want to be prepared.

I would go backstage at every Counting Crows concert.

I would go places naked where I wouldn't be allowed to be naked if people could see me.

I would visit people I do not like and screw with their heads--moving stuff around, talking to them, etc.

I would sneak into armories or wherever the heck guns and military weaponry is stored and melt it all down to make art.

I would steal a plane, food, and medicine from rich companies, and air drop it in impoverished areas like Darfur.

I would "deliver" flowers to people who are alone or depressed with a note that says "You are loved."

Hmmm. Now I'm on a roll.

Monday Yucks

My day started with me sleepy and in a mean mood. I'm trying to remember that I can start my day over at any time. Like now.

Nope, still stucks.

One more time.

OK. It's a little better. Erykah Badu on Pandora is helping.

MS Haikus

Sleep evades me now.
Insomnia is my foe
MS gets so tired.

My upper arms ache.
Result of ex-stress no doubt.
My power. My choice.

Bad TV. Scrabble.
Escape routes for boring moms.
Only numbs the pain.

No meeting weekend.
Big surprise I feel like crap.
Serenity now!

Mind Sparkles. MS.
Lesions abound. Brain and spine.
Can't wish them away.

All meaning changes.
MS. It used to spell Ms.
I want that back now.

Angry Haiku

I liked the six-word stories so much and I'm heavy some heavy-duty emotions right now. I am loathe to share details of my ex-husband's latest shenanigans because it will no doubt bite me on the ass, so I've decided to use this ancient Japanese poetry genre to express my current feelings for the lovely man who fathered my children:

Poison burns my throat.
Hatred and fear soil my soul
Forgiveness? Soon, please.

Care to share your haiku? Remember, haikus are 3 lines with the first line 5 syllables long; the second line 7 syllables long; and the third line 5 syllables long. Think of these peeps as syllables.



Show me what you got.

I had a dream...

...but not the Martin Luther King Jr. kind. I stayed in bed pretty much all day. Whenever I sleep during the daytime, I have bizarre dreams. Some good, some bad.

First the bad. Not because I'm a pessimist, but because I like to end on a high note. I dreamed that John came back after picking the kids up--maybe an hour after they drove away. He came back to drop them off, saying that having them this weekend "just didn't work for him." I kept thinking: Now I won't get to have dirty porn sex with Ken tonight. Bummer.

The good dream was cool. I won some big award for this blog and I was going to go to some Emmy-type award ceremony and get some bling-bling icon to go on the site. I kept saying to myself: A year ago, I had only visited one blog and I couldn't have really told you what blogging was all about. Wow! I must be pretty great.

Off to my meeting now.

6-Word Story

My friend, Diane, told me about this very cool, collaborative writing project called six-word stories at webook.com. Brevity is not really my thing, so I though I'd give it a try.

One.
Two.
Three.
Four.
Five.
Six.

Just kidding. How about this one: Noxema on sandy skin. Sunburn tingles.

Grammer Help

I love this grammar girl website. The author gives tips and advice in plain language. Thanks to Grammer Girl, I finally understand, once and for all, the correct usage of Who/Whom. I may ignore the rule now but I do know it!

Trapped in the Body of a Volvo-Driving Suburban Mom

I'd like to think that I'm slightly cooler than the average suburban mom. I do NOT wear embroidered kitty shirts (no offense if you do--it's just not my style) or "mom jeans" and my friends have my permission to perform a fashion intervention if I ever do. Nor do I wear too- tight low-riders or belly-baring tank tops from the junior department like some pathetic, middle-aged former stripper. I believe that I have maintained some sense of contemporary style. I am definitely NOT stuck in the 80s or 90s. (Some would argue that my musical taste is a little stale, but they would be WRONG.) I may be kidding myself or believing blatant flattery, but usually people are pretty surprised that I'm 44. I'm actually pretty surprised, too. It seems like just yesterday that I was a teenager who couldn't imagine growing old and had never heard of Multiple Sclerosis.

Going to see live concerts, particularly of my favorite band, Counting Crows, acts as a time machine. I become a 16-year old girl. Not the one that I actually was at 16. This girl is very, very happy, present, and comfortable in her own skin. She is definitely NOT worried about being cool. She dances to the beat of her own drum, she sings at the top of her lungs even though she can't sing, and she is VERY, VERY impressed by musical talent. (Maybe because she has none...?) She would gladly trade her most prized possessions for the chance to be the girl pulled on stage to be seated on a stool and serenaded by the lead singer. (Think Courtney Cox in the 80s Bruce Springsteen video on MTV.) Last Saturday night was MY night. Counting Crows played the Tweeter/Comcast Center outside Boston with Sara Bareilles and Maroon 5. I rested up all morning so I would have enough energy to really enjoy myself.

I went to the concert with Bald Hot Ken's 19-year-old daughter Alli. She was the perfect chaperon for me. She drove, had an awesome digital camera, wasn't afraid of PortaPotties, liked being down front, and completely understood when I told her that both lead singers (Adam Duritz and Adam Levine) were on my list of famous people I was allowed to sleep with if I ever got the chance. (Although I could have done without her passing that nugget along to Ken.)

We had a blast. We paid way too much money for what were, in effect, 3rd row seats (although I made friends with the woman sitting in front of me so I could move to her 2nd row seat during the Counting Crows); I talked back to a security guard who wouldn't let me stand in front of the stage; I bought my 29th, overpriced Counting Crows T-shirt; and spent an hour, waiting in line to drive out of the parking lot, talking about people in other cars and sharing dirt about all kinds of stuff.