Thursday, October 30, 2008

Last Minute Laughs and Emerging from Denial

I need to go to bed but I simply HAD to repeat the news teaser I just heard as I was turning off the TV. "Dying for an MRI?" said the announcer. "Coming up on 7 News, the hazards of this popular procedure."

POPULAR PROCEDURE? Do people with MS have a choice?????They made it sound like it was liposuction or botox??????!!!!!!!!

I am not someone who overreacts to sensational news stories and I am not afraid of getting an MRI, but I do think I will have to write a letter to this CRAPPY news station. Popular procedure, my a$!

On a somewhat related note...I may be in relapse. I have pretty bad leg pain that has been getting worse over the last several days. After meeting with my therapist (do you think I got this mentally healthy all on my own?), I realized that it can't hurt to call the neuro but it could hurt to NOT call. If I am in a relapse, there could be residual nerve damage if I don't address it. This sucks but ignoring it doesn't make it suck less.

So I called and left a message for my neurologist's office. Not the new one who I will see on December 3...this is the old one who is mad at me for not following up with the urologist. More to come, I'm sure. It seems that, although I closed my eyes and clicked my heels together three times, my MS has not disappeared.

Wednesday, October 29, 2008


I live my life by a few simple philosophies. I try to accept the things I cannot change (like everything except my own actions) and change the things I can. In the realm of politics, I've had a whole lot of practice with the former these last 8 years. No matter how much I wish otherwise, I have absolutely no control over George W. or his cronies or the results of their decisions (war, diminished reproductive and civil rights, crumbling economy, the whole world hating us, etc., etc., etc.)

I do, however, have a voice and, no matter what, I use it. For the last several months, I've been able to join my voice with others and direct my "courage to change the things I can" toward doing everything in my power to get Barack Obama elected.

I have hope. The person who I believe can and will be a great president has made it this far. I supported him in the primary. I supported him when I used up all my spoons to go up to New Hampshire to go door to door to talk to undecided voters on his behalf. I supported him when I invited people into my messy home to call volunteers in North Carolina in the hopes that they would get out the vote in that critical swing state. I supported him when I donated the small amounts of money I could to his campaign. I support him when I write and blog about my political beliefs and share what I read, hear, and see with others. I support him when I stay involved and aware. I support him with the bumper stickers on my car and the magnet on my bulletin board and screensaver on my computer at work. It isn't much but it's everything.

If Obama doesn't win next week, I don't think he will lose to McCain. I think he will lose to a much more sinister opponent: Apathy. Please vote on Tuesday. For me, for you, for our children, for the world.

Wednesday, October 22, 2008

Defective Brains

One day last week, when I picked Ruby and Zane up after school, they were both playing on the playground. When Ruby saw me, she ran toward me with a little girl in tow, very excited to introduce me to her new friend. They had just met because Miranda had just started her school year. She had a pretty good excuse for missing the first 6 weeks. She was having brain surgery.

Miranda is a beautiful little girl with big blue eyes and a bald spot on the top of her head. She was wearing a bandanna but I could see gauze poking out from underneath. When Ruby told me that Miranda was recovering from brain surgery, I started babbling nervously about how horrible MRIs could be, how it's cool to see a picture of your brain, and other stuff I don't remember. I think it was because I felt an instant kinship with Miranda and I was trying to explain that. I wanted to let her know that I had a defective brain, too.

Her very nice parents arrived to pick up Miranda. After some chit chat and more babbling, I finally asked why Miranda had brain surgery. Her parents told me that she had a potentially fatal defect on her brain that was only found when she volunteered for an MRI study. She was part of the healthy control group to compare with the MRIs of children with diagnosed depression. After the MRI, though, they learned about the defect and that the treatment involved brain surgery.

Miranda volunteered for an MRI and ended up with a venal defect in her brain and surgery on the horizon.

I went to the doctor with what I thought was pink eye and ended up with MS and a whole lot of uncertainty about my future with a progressive neurological disease.

We are both very, very lucky.

Tuesday, October 14, 2008

News Flash: I Still Have MS!

Be forewarned: This is a bitchy post that doesn't come around to my usual Pollyanna perspective at the end.

I recently read a post by another MS blogger that reminded me why I began Maybe I'm Just Lazy and what I still need to write about.

I'm not beating up on myself. Politics and fun are both very important to me and the world. But MS AND MY LIFE is what I need to write about. It's what prompted me to dig down and find my writing voice again. McCain and Palin will continue to spread hate, dishonesty, and intolerance; Obama will be elected President; and I will still have MS.

On her blog, Empire No More, PunkRockFairy (I'm assuming that's not her real name) wrote an incredibly poignant and elegant piece about how MS has reeked havoc on her confidence. By the time I finished reading the post, tears were running down my face. As I told the author, I cried not because I felt sorry for her but because I knew exactly what she was talking about.

When people ask me how MS has affected my life, I usually try to describe how it's robbed me of my sense of invincibility. I used to think I could do anything. Now I'm not so sure. I used to be freakishly strong. I was the person who carried the heavy box alone and who could always open the really hard-to-open jars. I did not need help moving furniture around and I could install and remove an air conditioner all by myself. Not anymore.

While I've never been especially graceful, I didn't usually trip over my own feet. Sometimes I do now. Before MS, I usually managed to carry my iced coffee to the car and then into work without incident. That is no longer a given and I've dropped more iced coffees than I'd like to remember in the parking lot at work or next to my car at home.

Before MS, I'd like to think I had the ability to effectively communicate my ideas and thoughts and that I was pretty eloquent in expressing them. That is not always the case now. I sometimes have to search for the word that I am thinking. I know the word but I sometimes lose it temporarily or mix it up with another word and don't realize until the wrong word comes out of my mouth.

I used to have pretty good vision. I was 30 before I started wearing glasses and then only for driving at night. Today, I REALLY don't like driving at night and, if I have to, I have to either close my bad eye or wear a patch over it. I used to love shopping. I could spend HOURS in Building 19 or Ocean State Job Lot or other stores that had a plethora of bargains. Now, because of Uhthoff's Sign, I have trouble walking and seeing at the same time when there is a lot of visual stimulation. Unless I know the store by heart, I can't find a particular department even if the signage is pretty prominent.

I can no longer hold it. Yes, that's right. I'm talking about the thing no one with MS wants to talk about: the dreaded bladder dysfunction. When I feel like I have to pee, I better be close to a bathroom and it better be available. I have too much pride to describe this symptom in detail in this forum. Suffice it to say I laughed harder than the average person (and a little uncomfortably) when I saw David Sedaris' Stadium Pal reading on Youtube. While it sounds somewhat horrific, I'm not sure the Stadium Pal is any worse than the alternative. I'm a new fan of Mad Men and, when I had my own little On Demand marathon the other night, I didn't laugh when Freddie peed his pants while drinking at work. I know he was drunk and I know it's fictional (I haven't completely lost my grip on reality), but it was really, really sad to me. Come to think of it, I probably peed my pants in public when I was drinking, too. But I digress. Bladder dysfunction sucks under any circumstances and, when you are a 44-year old woman who would like to think she's still relatively youthful and, on a good day, kinda hot, it's very, very degrading. One minute, you're enjoying the appreciative glances from the 40-something hottie in a Saab in the next lane and the next minute, you are doing the pee-pee dance outside the single stall in the women's restroom at Dunkin Donuts, considering tackling the old man with the cane out of the way as he enters the men's room next door.

And then there's the whole spoons thing. I have a finite amount of energy and no matter how much I try to pretend it isn't true, I cannot stay up until all hours or do too much one day and not pay for it the next day and sometimes even the next two days.

Have I mentioned the hip and leg pain recently? Some days it hurts and it doesn't seem related to activity or inactivity. I go for a long walk, it hurts. I lay on the couch like a sloth and it hurts.

I see my new neurologist at the Partners Multiple Sclerosis Center next week and I will have to tell her that I rebelled against my last doctor and didn't get the 6-month series of MRIs. I sure showed him, huh?

Ok. I'm done whining now.

I have to start talking more about him and less about her.

Monday, October 06, 2008

Next up on the runway....LAZY JULIE!

Click here or on the picture on the right to order your tickets for the Women Against MS Fashion Plates luncheon and fashion show to benefit the Central New England Chapter of the National MS Society.

I've been selected to be one of the honorees at the MS Society’s Women against MS Fashion Plates Luncheon at the Boston Seaport Hotel on 11/14. I will be profiled in the event program (along with a few dozen other FABULOUS women with MS), there will be a table named after me, and I will be one of the models in the fashion show of Lord & Taylor & Jones New York clothing (they are even doing my hair and makeup!).

This fundraising event will also feature raffles of some pretty awesome prizes, including a trip to NYC, spa packages, and more. The tickets are rather pricey at $100 each but you will get a delicious lunch from the Seaport Hotel and help a cause that is near and dear to my heart—finding a cure for Multiple Sclerosis.

My very close and generous friend, Christina, has agreed to buy my daughter‘s ticket and accompany her to the event. I'm thrilled that Ruby will be able to see her mother celebrated for the authentic way I deal with my MS (mostly with humor and over sharing through my writing).

If you will be in the Boston area on November 14 and can afford the ticket, I would love to have you join Ruby and Christina at the Julie M. Baker table. If you will not be in the area, I would encourage you to visit the website anyway and make a donation in my name. If, like me, you tend not to have extra money to financially support even the causes that you really care about, then please send me your positive vibes/prayers/good wishes that I will be graceful on the catwalk.

If you buy tickets, please make a note somewhere that you’d like to sit at the Julie M. Baker table.

Thanks very much for your support—financial and moral.

Sunday, October 05, 2008

10 Nice Things to Say about Sarah Palin

Since I spent all day Saturday canvassing for Barack Obama in the swing state of New Hampshire, I'm feeling really energized and hopeful about the election next month.. When I'm feeling good about the direction of my candidate, it's easy to throw a bone to the other side. In that spirit, here you go. The Women's Media Center's 10 Nice Things to Say About Sarah Palin.

Friday, October 03, 2008

Here Comes The Ex...All Dressed in White.

When I pulled up in front of my house after grocery shopping last night, Mr. Ex was already parked outside to drop off the kids. Ruby came running up to my car window to tell me that she had something very exciting to tell me. I asked her what it was and she said she wasn't allowed to tell me until Daddy left. (I'm guessing the delay was his idea.)

The big news? He is engaged to be married. He proposed to his girlfriend on Wednesday night with a ring...I believe on bended knee. Yup. The man who used to be my husband is now going to be married to someone else. He is going to have a wife who, I would guess, will take his last name (something I never did).

Ruby went on to tell me that she is going to be a flower girl and that she and her soon-to-be stepmother will purchase and wear matching dresses. Zane will be the ring bearer and will dress the same as his Daddy.

I am very happy for Ruby that she gets to be a flower girl. That's one of my childhood dreams that was never fulfilled. (What's the age limit on flower girls, I wonder? If anyone is in the market for a 44-year old flower girl, please let me know.) I'm also happy for Zane because he really enjoys wearing ties.

So, how do I feel? I was surprised to hear about the engagement ring. I didn't get one when we decided to get married. Nor did I get a proposal, actually. I think someone just said, "If we're ready to have a kid soon, should we get married?"

They are getting married this summer in Maine...either on the beach or at the "zagebo" (Ruby's initial pronunciation of gazebo.) I did not have a wedding, but I did get married in a zagebo in front of the town hall that I pass every day on my way to work.

At the time we eloped, I didn't want a proposal, a ring, or a wedding, but now I think it was because I didn't believe I deserved those things. Also, I am a card-caring feminist and I didn't know how to have a wedding and cut out all the sexist crap I didn't want to include. I also didn't know how to not invite my mother. So, we eloped to the Milton Town Hall. The Town Clerk who married us suggested we use the gazebo out in front of the building right on a main street. A firetruck tooted its horn at us during the "ceremony." Our "attendants" were Wendy and Hicham, visiting friends who found out we were getting married when we showed them the license about 30 minutes before our appointment. I wore a pinkish/purple sundress and little white sneakers. Mr. Ex wore shorts and sandals.

We went out to breakfast afterward at Newcomb Farms and then went swimming at the Cunningham Pool. We also went to see my friend Alex Dolan and his band at the time. I think they were playing somewhere on Landsdowne Street. I remember I got to pull open the curtain. I also remember dancing a lot but not with my new husband. He threw out his back a few days before we eloped and was in too much pain to dance.

So, how do I feel? Weird! The consensus among all but one of my committee members is that my feelings are very normal, whatever they are, and that I'm supposed to feel weird. Apparently, it is universally weird when an ex-spouse remarries. So, what is underneath the weird, I wonder?

Am I jealous? Not of his girlfriend, for sure. I do not wish to be with Mr. Ex. I was married to him, I asked for a separation, we got a divorce, and I'm very glad we are not together anymore. Been there. Done that. I do think, however, that I might be envious of the fairy tale. I don't want the ring/proposal/wedding right now but I think I may want it all someday. Or maybe I wish I had it? Or maybe I want to want it someday....?

I know there is no competition. So, why do I feel like he won? I truly want him to be happy if for no other reason than his happiness will improve his dealings with me and prevent angry stuff with the kids. I truly believe our relationship ran its course, we outgrew each other, did everything possible to make it work before giving up, and are way both better off with other people. So, why the envy? Is it because he is remarrying first? Do I want to remarry? Ever?

I love Ken and, although I do not know what the future will bring (particularly if Obama doesn't win the election!), I feel loved, heard, and respected in my relationship. That is real.

It is also real, however, that we are not ready to live together much less remarry. And sometimes, when issues of politics and parenting come up (the double P dilemma), I wonder if we ever will. Don't worry. This will not be new information for Ken when he reads the blog. I am nothing if not a good sharer of my emotions.

I know that comparing my relationship with Ken with Mr. Ex's relationship with his fiance is comparing my insides to the outsides of someone else and that never works. It's not a valid comparison if you don't have equal amounts of information about the two things you're comparing.

Hey! I just realized that, after he remarries, I will become a First doing absolutely nothing. No application, no interview. That sounds very important doesn't it? There was a movie, too. First Wives Club. Do I get to join that club even if I don't want to break up his relationship? Are there club dues? Where are the meetings? Is there a secret handshake?

How Do You Pass the Rescue Bill? Add Money!!

I just read this NPR article regarding the bailout package that just passed the House. The results? The stock markets dipped dramaticallyl....again.

Mooooo McCain

mav·er·ick (mvr-k, mvrk)
1. An unbranded range animal, especially a calf that has become separated from its mother, traditionally considered the property of the first person who brands it.
2. One that refuses to abide by the dictates of or resists adherence to a group; a dissenter.
Being independent in thought and action or exhibiting such independence: maverick politicians; a maverick decision.

[Possibly after Samuel Augustus Maverick (1803-1870), American cattleman who left the calves in his herd unbranded .]

The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2003. Published by Houghton Mifflin Company. All rights reserved.

She Knows How to Follow Instructions!

Thursday, October 02, 2008

Post VP Debate Concern

Hi, My name is Sarah Palin and I am adorable. When I'm afraid you start to forget that fact, I will smile, tip my head and, even wink. I am going to control the conversation by bringing it back to the jobs, jobs, jobs, energy, energy, energy, because those are the topics that I rehearsed the most. I will be folksy and cute and talk right to middle America via the camera. I will talk really fast so hopefully people won't notice when I called my opponent O'Biden and said that there was toxic waste on Main Street that filtered down to Wall Street (instead of toxic waste on Wall Street, filtering down to Main Street.) .

I will continually mispronounce NUCLEAR so it sounds like a dessert. I will wear a black suit and neutral-colored lipstick so you think I'm smart and serious. I will breathe a sigh of relief when the moderator does not ask me about abortion rights or embryonic stem cell research. I will present myself as being from a diverse family because I have a 3rd cousin who's a redhead.

I think she won by not spinning COMPLETELY out of control. I think he won by showing his passion, intelligence, humanity, and knowledge. Most of the pundits are saying he won. But what about middle America? Will they recognize how well-rehearsed she was? I think she scares the crap out of me. Imagining her as McCain's VP seems absurd. He has had melanoma 4 times and would probably die within a year or two. The idea of her being Prez is ridiculous. She isn't running for that office but she may inherit it while in waiting.

In the meantime, I plan to join MoveOn.og, on a trip this Saturday. I will canvas on Obama's behalf in the nearby swing state of New Hampshire.

Wednesday, October 01, 2008


I'm not sure what's going on with my videos lately but I'm aware that there's no sound. Grrr. Try this one.

Do you know the deadline for voter registration in your state? If not visit: here.