Another M(ind) S(parkles) Consultant

"Lazy Julie's MS, meet the new Brain Doctor. New Brain Doctor, meet the lesions on Lazy Julie's brain and spine. Talk amongst yourselves. Topic: Multiple Sclerosis."


My new neurologist is Dr. Rocio Lopez-Diego with the Partners MS Center in Brookline. She is a she, which is very exciting for feminist me. Fair or unfair, I connect better to women doctors and, since I'm in it for the long haul, I think it's ok that I'm choosing someone in my comfort zone. She is also young, direct, honest, positive, hopeful, and says she's not afraid to treat MS aggressively. She prescribed yoga three times a week, in addition to my Rebif, lots of calcium and Vitamin D, and monthly solumedrol infusions. According to Dr. Lopez-Diego a person can't "use up" all the benefits of solumedrol if they get too many treatments as I had previously believed.


While I'm very excited about the new neuro, the MS Center where she works, and their teamwork approach to my treatment, I feel the need to be somewhat cautious with my enthusiasm. I remember writing about how much I loved His Majesty Dr. Misha Pless after our initial appointment. During our second visit, however, he told me that he might not be the right neuro for me if I wasn't willing to follow his every directive. I'm no longer a big fan.


When Dr. Lopez-Diego reviewed my records and MRIs, I had another episode of SOD (Sudden Onset of Denial). For about 45 seconds, I wondered if she was going to tell me I did not have MS after all and that it was all one really massive medical mistake. I pictured the ensuing court case, the insurance settlement, and the awkwardness of telling everyone, "Just kidding! No MS here...I really am just lazy!"


Nope. I still have MS.

MS Activism

Click on this link or the image above to read about the two-year wait before people can qualify for Medicare after they are deemed disabled.

My kidneys have MS, too

I heard a story about a 15-year old girl who needs to have a kidney transplant in order to live. Her mother put the word out via her blog, Twitter, and other social networks. I thought about how I was using social networking in a similar way to beg for Inauguration tickets and I felt humbled...so humbled, in fact, that I wrote to the nurse at the hospital that was managing the girl's possible kidney transplant to find out if a person with MS can be a kidney donor.

And that's when I found out that I not only have a defective brain, but substandard kidneys as well. Multiple Sclerosis is on the list of contraindications.

How about you? Do you have a spare kidney? Apparently, you only really need one. Visit the link above to see if you could become this family's hero.

Random Treasures and Trash from the Web

I've been surfing a lot lately and finding some cool stuff I felt like sharing.

• Hillary Clinton just accepted President-Elect Obama's offer to be Secretary of State in his administration. Thoughts?
  
• I saw this YouTube Video right after paying bills online. It's cute...or maybe it's just me...?
• Really Bad Parenting Advice has this article about children's birthday parties.
• The Office Max Elf Yourself is back in time for Christmas. I will, no doubt, be posting a Lazy Julie version at some point.
• I googled "forgiveness" recently and found this cool site.
• I joined a group on Facebook called Asking Michelle Obama to Wear Orange to Fight MS and I'm having fun searching for beautiful orange clothes and accessories for our elegant new First Lady to wear.
• I'm getting very excited about the Inauguration and I've decided to go to DC for the festivities. Liz lives in nearby Alexandria and Donna will be coming in from LA. Whether I will be standing on Pennsylvania Avenue freezing while I watch the motorcade go by or shaking President Obama's hand at an elegant ball while wearing the purple dress, I do not know but I'll be in good company, according to this article. I have already written to the two Massachusetts US Senators; my U.S. Congressional Representative; my Governor (who is a Facebook friend no matter what my friend Diane says about it just being his administration's account); the Obama transition team at Change.gov; everyone I know on LinkedIn, Twitter, and Facebook. I am sending the Universe a message loud and clear that I want to be at the Inauguration in whatever capacity I'm supposed to be there and trusting that social networking will not let me down!
  
• One of my favorite bloggers, Terrible Mother, wrote a post with an image that will forever be branded in my brain. Hmmmm. Maybe a new lesion will block the image. Yet another upside to MS!
  
• I recently bought this MP3 album and I'm loving it! It's getting me very excited for Obama's inauguration on January 20 (60 days away!). It has a variety of music interspersed with clips from Obama and Martin Luther King, Jr.
  

Blondes Get MS Too!

Women Against MS Fashion Plates 2008

The Women Against MS Fashion Plates fundraiser was Friday and it was wonderful. The room was packed with people who purchased tickets for $100 a pop, with all the proceeds going to the Central New England Chapter of the National MS Society. Attendees also purchased hundreds of raffle tickets to win some fabulous prices donated by area vendors.

Christina, one of the sisters in my heart, bought a ticket for Ruby so she should attend the event. Diane and Karen Teacup were her chaperones. Ruby had a fabulous time and I don't think it was just because she had the day off from school and took home a Lord & Taylor gift bag. She was very proud of me and I was so happy and grateful that she could be there.

I heard that the food was delicious and I know the models were wearing some pretty incredible clothing loaned to us by Lord & Taylor. We also had a team of hairdressers and makeup artists backstage to make all the models look even better than our best. All the Lord & Taylor dressers and the Women Against MS committee members were lovely and very, very helpful. From what I saw on the video, Channel 5 Newscaster Liz Brunner did a fabulous job as an MC.

All the women honored at the event were interviewed for the Real Stories of Real Women with MS. Our photos and quotes from the interviews were on large screens and framed on tables around the room.

With a lot of help from a lot of friends, I quieted the mean voices in my head (You're fat, you didn't sell enough tix, etc.) and had a ball! I asked the Universe to allow me to suck every joyous moment out of the day and to be aware of all the blessings coming my way. It worked! I was fully and completely PRESENT and it was a gift.

This was my first outfit. When I stepped up onto the runway, I couldn't believe how many people were in the room.

The crowd cheered when I showed off the very cool sleeves on this jacket. Like a good ham, I took that as encouragement to strut my stuff.

While preparing for the fashion show, I met so many wonderful women with MS who, like me, try to be positive and enjoy life to the fullest. MS affects each of us differently and, although we can't control what it does to our bodies, we share a common goal of not letting the disease sap our spirits. I was humbled and inspired by their beauty, on and off the runway. I look forward to staying in touch with these women and joining the event committee for next year's Fashion Plates fundraiser.

All of my "fashion photographers" took only pictures of me and the supporters at my table. As soon as I get the video translated into digital form, I will post it and you can see all the gorgeous woman who shared the runway and the honor of the event with me.

Ruby was my personal fashion photographer standing at the edge of the runway. Ruby wanted me to give her the "Z-snap" which I did and then all the other models snapped at her, as well. She was thrilled.

This was the snap for Ruby. See the hand at the bottom? That's Ruby's.

Ken liked this tweed suit a lot but the binder clip holding my skirt up made it a little more booty-liscious than it was supposed to be.

You can see who's the real model in the family.

This black number was the final "look" of the show. It was a very Jackie O like black dress with a jacket that I took off half way up the runway to show off the results of my recent bra fitting. I was amazed by my own cleavage! All the other models joined me on stage for a final stroll in a big circle on the runway. Diane's camera has a delay, you get to see the booty shot.

I think this was taken before the show began. That's my bald, hot boyfriend, Ken, with Ruby and Karen Teacup.

Ruby was very excited to bring home the centerpiece. She gave it to her Dad's fiance as an engagement gift and...you know what? I smiled and said, "What a great idea, Ruby!"

If anyone has an extra ticket to one of Barack Obama's Inauguration parties in DC, I'm available and I think this Anne Klein raspberry sheathe cocktail dress would be perfect for the party. I will not, however, be bringing along the $500 Kate Spade bag.

It took several tries before Ken stopped goofing off with his tongue in my ear for this shot after the show in my much cheaper clothes.

Lazy Julie with some of my supporters, Ken, Ruby, Diane, and Teacup. Andrew and Tim were at a different table and many, many friends were there in spirit, supporting the question of the MS Society to find a cure for MS and holding my hand on the catwalk.

Ready for the Runway!

This afternoon, I went to my fitting at Lord & Taylor for Friday's Fashion Plates show. It was amazing! For the first time in my 44 years of life, I did not look at price tags before bringing clothes into the dressing room! (I did, however, glance at a few tags after trying on some items and WOWZA! I could have paid my rent with the outfits we rejected. )

Another first: I didn't pick out any of the clothes that I tried on. I was accompanied on my "shopping" expedition by a representative from the Jones New York and Anne Klein collections. The lovely woman named Lisa had a sister with MS and was donating her time to the event.

I get to wear four different outfits in Friday's fashion show and I am going to look AWESOME if I do say so myself. One dress is so gorgeous that I've decided I will buy it and wear it if and when I am invited to one of Barack Obama's Inauguration parties. So, if you want to see me in the dress and you will not be attending the fashion who, you need to bring me as your guest if you score tickets to one of the January 20 Obama events in DC.

I really enjoyed meeting several of my fellow real women with MS models. It's so not true what people say: We models are not coniving bit%&es!

So, stay tuned for photos and maybe even a video of my walks down the runway. Shoulders back, chin parallel with the floor, one foot in front of the other, swing my arms, and strut it like I mean it!

Happy Veteran's Day!

I am a pacifict so I always feel a little conflicted on days that celebrate the military. But I now realize that Veteran's Day doesn't do that. It celebrates the people who serve in the military. I love them, I love my country, but I hate war. Here are some suggestions/observations for my fellow peacenicks on Veteran's Day:

Great article about Veteran's Day.

Anti-War Veteran's Day Events

We have a War Office; why not an Office of Peace?

And a big shout out to Diane's son Dave who is serving in Iraq right now. Be safe.

I'm taking a refresher course in the healing power of gratitude. Care to join in?

Thanks President-Elect Barack Obama!

President-Elect Barack Obama has a new website to tap into all the engaged voters who participated in the process and helped make November 4, 2008 one of my favorite days ever.

I took the opportunity to contribute to the Tell Us Your Story section. (Like I have EVER missed an opportunity to tell my story!). I thought I would copy it here, too:

I am a single mother with Multiple Sclerosis.

For almost my entire 44 years, I have always been an accidental activist. When I was 8-years old, my older brother went on vacation for the summer and I took over his paper route. One day, my long hair fell out of my baseball cap while I was collecting for the paper and a customer outed me as a girl to the powers that be at the Hartford Courant. They fired me because girls were not allowed to have paper routes in 1972. I fought back and was allowed to continue until my brother returned.

Due to my father’s work and his untreated alcoholism, we moved around a lot when I was growing up, (I’m grateful to report that he and I have both been clean and sober for many years now—one day at a time.) When I was 10, we moved to the Midwest to what my parents didn't realize was a very racist community. It was one of those welcome-wagon kind of towns where the last new neighbor brought a pie over to the home of the newcomer. So, when a new family moved in next door, my mother baked her requisite pie and brought it over. I was excited because the family had children around my age. I wasn't quite sure what was going on when the other kids in the neighborhood started calling me a "Ni&&er Lover." My parents tried as best they could to explain this kind of hatred and bigotry but basically they left it to me to deal with the other kids. I walked to school with my new neighbors every day until we moved again. My only other memories of that particular town include a corn eating contest and a cross burning at the side of the road.

When I was 15, I worked as a farm laborer in the summer for a cigar tobacco company. The boys made 25 cents more per hour for picking in the fields. I was bored in the sheds (the girls' domain) and asked to go in the fields. I was told that girls could not pick tobacco. By the time I finished quoting the Constitution and threatening to contact the National Organization for Women, my female friend and I were picking alongside the men and making the higher hourly wage. I wouldn’t want to give anyone the impression that I was particularly strong or equipped to do the work of strong men, but that doesn’t mean that SOME WOMEN weren’t able to do it. I didn’t let my poor health habits or physical weakness stand in the way of fighting for my feminist principles.

So, when I was diagnosed with MS in September 2007, it was not out of character for me to take action. I started writing and researching and felt a lot of hope when I learned about embryonic stem cell research and the hope it held for people with MS and other neurological diseases, diabetes, and spinal cord injuries. I felt extremely fortunate to have been diagnosed at this time and place in history. It was a new century! Science had advanced in leaps and bounds. A cure was on the way! Imagine my surprise when I learned that the Bush Administration and McCain/Palin radically opposed using embryonic stem cells for medical research because it would “endanger human life.” What about my life? What about the life of a child with diabetes? What about the life of a person with a spinal cord injury?

I have a friend who conceived her beloved son through invetro-fertilization. Last year, her husband, who is considerably older than her, had a heart attack and they decided they didn't want to have future children that he probably wouldn’t see grow up. The fertility clinic still has frozen embryos in storage. Under the Bush administration, my friend can let them languish in the freezer until the clinic kicks them out; they could throw them in the garbage; or possibly donate them to be implanted in a stranger. My friend would not have been able to say, "There are millions of children already in the world who need homes. Those potential donation recipients should adopt those children. Rather than have my DNA implanted in someone else and grow into a child that could take the place of one of these abandoned children, I'd rather donate those cells to help cure my friend from MS."

I support almost all of Barack Obama’s policies (I’m kind of disappointed about his stance on gay marriage but I’m convinced that he will listen, learn, and be willing to change his mind on that one). I admire Barack Obama’s ability to build bridges and to listen. I believe that what our country needs and craves and voted for is a leader who can bring together people with different views and help them find common ground. I believe these skills will improve our abysmal reputation in the world. For the first time in a very long time, I am proud to be an American.

Embryonic stem cell research, though, is the single issue that drove me to New Hampshire to campaign on behalf of Barack Obama. It’s what convinced me to knock on strangers’ doors and listen when they expressed concern about his readiness for the Oval Office. It’s what clamped my lips shut when someone expressed opinions different from my own (not an easy thing for me). I followed his example and tried to listen and rationally present other ideas. I really felt like I made a difference when a young mother took a voter registration card and a man who said that he was voting for McCain at the start of our conversation changed his mind by the end and said, “Well, thanks you guys. I think I need to look at Obama a little harder. I didn’t know that about his economic plan.”

It was the issue of stem cell research that drove me to host a party to call people in swing states on behalf of Barack Obama. It also brought me to others’ Obama calling parties; convinced me to donate money (that I’m not exactly rolling in); to put bumper stickers on my car and on my desk; to raise money; to write; to blog; and to social network in support of Barack Obama. In other words, like many people across the nation, I joined the movement. I do not have control over the world, but I do have one voice, and one vote. We all do and I tried to spread that message. I got all of my younger friends and my friends’ children to register and to vote…some for the first time. I walked the walk instead of just talking the talk.

I am thrilled that my candidate, Barack Obama, has been elected President of the United States. I supported him before the primary so this isn’t a case of feeling like the lesser of two evils won. Some of my friends were surprised that I was not supporting Hillary Clinton because she was a woman. I would love to support a woman but she was not the right person for the job. My vote for Barack Obama was not because he is an African American. It’s because he is the best person for the job. I am grateful and proud that MLK’s dream has come true and that a Black child can grow up and be president but that is not what I am most proud of. I am proud that we all kept hope alive. I am proud of Barack Obama but I am also proud of US. I can’t but WE can. He is a great man but, more importantly, he inspires others to find their greatness. He built a network and there are scores of people who now feel engaged in the political process. In my humble opinion, Barack Obama is already one of the best presidents for accomplishing that goal.

My Gratitude Fix O the Day

Steroids and GObama!

Sunday, November 2: MRIs--three hours with lumbar, cervical spine, and thoracic spine scans.

Monday, November 3: Started IV Solumedrol treatment. Came home and crashed afterward.

Tuesday, November 4: Day #2 of Solumedrol treatment. Voted with kids. Barack Obama elected President of the United States. For the first time in a long time, I felt proud to be an American.

Wednesday, November 5: Third and final day of my Solumedrol infusion. Really enjoyed walking in after President-Elect Barack Obama beat McCain. The Infusion Clinic full of Republican nurses told me they wanted to call in sick knowing that I would come in grinning. I held back the "Na-na-nana-na" but I did say "YES WE DID!"

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.

YES WE CAN!!!!

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 MoveOn.org 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.

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.

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.

Another Single Mom with MS-worth repeating

Not about MS. Not about Politics. But Funny all the Same.

How will John McCain fix the economy if he's one of the people who broke it?