Welcome to What I Hope Will Be One of the Last MS Awareness Weeks

  
It's MS Awareness Week. No need for cards or flowers. I'm not exactly celebrating either. Won't it be nice when there is a cure for MS and there is no need for a week of awareness for an illness with a vaccine, effective treatment, and a cure? I mean, you don't see polio or TB awareness week, do you? In the meantime, though. I thought I'd mark the week with daily posts to my blog.  Let's see if I can stick to it. If not, I can always blame the MS, right? If you can't blame the MS, well then, I want to trade it in for something I can blame. :-)

 So, day one of my MS Awareness Week posts is going to be pretty lame, I think. I came across a few MS-related news items that I thought I'd share:

• This BBC News article tells the story of a vascular surgeon who has discovered a link between MS and the vascular system. I wonder how and where I can have the blood flow in my jugular vein tested...? And does it hurt?
• A new study shows evidence that women with MS who are described as highly fit perform better on cognitive function tests. More of a reason not to skip the workouts.
• This Science Daily story reports of a link between Epstein-Barr virus and MS. I never had Epstein-Barr. Did you?
• Researchers at The Catholic University in Rome has found further evidence supporting the autoimmune hypothesis that supposes that a viral or bacterial pathogen similar to specific molecules of the central nervous system causes an inflammation which provokes a reaction of the immune system. This reaction ends up destroying the brain cells.
• Click here to download the MS Society's Research Now Spring 2010 issue to read about investigating ion channels for MS, high-tech research in MS, and hope on the horizon for people with progressive MS.

Fatherless for One Year

Exactly one year ago today, I told my dad that I loved him and kissed him goodbye for the last time. When I saw him a little while later, he was gone.

And he really was gone. When I left his hospice room to take a break from the death watch, he was unconscious but his energy was still there. When my sister came out to tell me he died a short time later, I went into his room and he was gone. There was still a body in the bed but it was just a body. 95 pounds of skin and bones and disease. He was really gone.

I believe he went to a better place where he didn't have to struggle for each breath.  It's a place where his damaged family members don't have to behave badly because they are sad to see him go. He went to a place where he doesn't feel pain, anger, shame, fear, or regret.

I'm grateful that I had the opportunity to re-establish a relationship with my dad, especially in the 10 years before he died. I will always be thankful that the kids and I spent February vacation with him the week before he went into the hospital. I know how lucky I am that I was able to tell him I loved him many times before he got very sick and I got to hear him say it back. I knew that he was proud of me and he knew that I had forgiven him. That is huge. While it was one of the hardest things I have ever done, I'm also grateful that I got to be with him in hospice and help him make the journey out of this life.

I miss you and love you, Dad.

Myelin and Monday

• This NPR piece about the middle aged brain was a little disconcerting for those of us who are already myelin challenged. I'm hoping that my addiction to Scrabble will keep further deterioration at bay.
• My new neurologist (#6) and I have decided it makes sense to try Copaxone as my next disease modifying drug. He was willing to give me Tysabri but since I am feeling so great, I decided to try another first round drug for six months before weighing the PML risks. By that time, they will probably have developed the JC virus test that identifies one of the common markers for PML.
• I submitted a short, short story to NPR's latest three-minute fiction contest about an hour before their midnight deadline yesterday. I'm rather proud of myself for just writing and submitting something although winning would be even better.
• I spoke to an old therapist today who didn't know that I had MS. I found myself doing the "lemons into lemonade" cheery default that I do when I'm afraid people will pity me.
• The anniversary of my dad's death is just around the corner and I'm definitely feeling it. I keep thinking, "A year ago yesterday, I was arriving back in Florida;" "A year ago today, we were talking to the doctors about shifting him to hospice;" etc., etc. The actual day is Saturday (3/6). I'm spending the evening with a friend with MS at The Accelerated Cure Project's annual event. 
• I'm going to revive Team Lazy and invite others to do the MS Challenge Walk over two days in September in support of the National MS Society.

Poetic Inspiration

Invictus

by William Ernest Henley

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

Where's MY Mommy?

I have a cold. It's not even that bad of a cold. No fever, no phlegm. Just a runny nose, a stuffed head, kind of run down feeling, and a little cough. But you know what? This annoys me more than having a chronic, incurable neurological disease.

I'm taking over-the-counter nasal decongestant, drinking tea with honey, making sure I'm getting enough fluids, etc. I have no doubt that I will live even without medical intervention. But in the meantime, I want to climb into bed and be taken care of. I don't remember that ever actually happening when I was a child so I don't think this is nostalgia.

Maybe it's about an unfulfilled desire or may needy is the sick default response. I want to be served chicken noodle soup and juice, and have someone take my temperature with their lips on my forehead like I do for my kids. I want to have extra blankets tucked in around me and be told that I can and should just rest. I want a mommy. Not my mommy. Just A mommy. 

Hump Day Ramblings

They updated videos and journal entries at HowIFightMS.com. I love getting to know my fellow vloggers through their contributions and I love laughing at whatever I said and however I wore my hair during my video (since they usually post them at least a couple months after they're shot). It's funny. My life feels like it moves rather slowly but I think it's actually parading along at a breakneck pace. I think I'm enjoying the journey most of the time.

I'm lonely. I'm saying and writing that out loud because I'm still having the whole love affair with myself and my higher power and I'm trying to trust that when the time is right, I will be in love again and it will be better than I've ever had or could even imagine. Rushing that readiness is impossible and, as I so delicately tell my friends:  How will you know when Prince Charming is at the front door if you are in the backyard blowing the garbage man? (And that is NOT a slur against sanitation workers especially since I have a really cute one picking up my trash every week.) I swear I'm not going to go on a casual sex rant...well, maybe a little...but my statement is not to suggest that casual, SAFE, mutually-respectful, honest sex is wrong or immoral or whatever. In my opinion (and that's the only one I am authorized to express), it is a wonderful thing...if it's what you want. I have done it and enjoyed it immensely. Nuf said about that. I just know that it is not what I'm looking for or want right now and why eat potato chips for dinner just because you're hungry when you can wait and have a gourmet meal. Geesh, I'm full of the dumb analogies this evening. :-)

I am struggling with the bills. I mean, I have a job and I live within my means...more or less. I am struggling with ORGANIZING the bills and paying them in any sort of organized, disciplined fashion. I would love to have a personal assistant to organize my bills and my medical appointments and the kids' school papers and my LIFE. Others have written of this, as have I, but I think I actually need a wife.   A 1950s, comfortable in her role as the support system that allows the family to function properly, wife. I need one. Hmmmm. Maybe I could kill two birds with one stone, here...

I jest.

I am seeing my new neurologist next week. I think this may be my 6th one. There was Kenny Chang, the neuro-opthalmologist who diagnosed me. Then there was Dr. Teeth, his boss, who scared me. Then there was the young cute one who got me started on meds. Then there was Dr. Pless who thought he was God and that I should worship him and his treatment plan, no matter what. And then there was Dr. Lopez-Diego who, apparently, thought she had to protect me from all that pesky information about Tysabri that I must be too stupid to understand. So, with this guy, my intention is to be on time (no small task), honest, assertive, respectful, prepared, and thoughtful. I will take notes to the meeting and at the meeting and I will call with any follow-up questions. Or have my wife do it.

Loving Myself

 

Happy Valentines Day...or whatever. 

I think Valentine's Day is a little silly. It's become this Hallmark holiday that somehow combines the celebration of a martyred saint with a flying baby in a diaper to guilt people into buying stuff to prove their love. But then again, I love getting flowers so I guess that makes me a bit of a hypocrite. 

I do think love is a wonderful thing to celebrate and I am warmed by stories of true love and commitment. I want to believe that once I figure out what I want, the Universe will bring me a great romantic love--better than any I've had before. Because I will be better than I was before. Even without a romantic love relationship in my life right now, I have embraced Valentine's Day this year. I've decided to rededicate myself to loving me. So far so good.

It's two days into my three-day weekend and I am on day 5 of no sugar, I've been to a meeting, I did work on my recovery writng, I went ice skating with Ruby and Zane, I went out to hear some great blues music and dance with a friend last night, I went to church this morning to be with my spiritual community, and I've had down time just hanging with the kids. Life is good. 

How about you? Are you  recognizing and enjoying all the love in your life today? Or at least enjoying all the candy?

"People are like stained-glass windows.  They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is light from within." ~Elisabeth Kübler-Ross

Hey, I heard you have MS!

A few weeks ago I went into the office for an on-site meeting with a project partner. I like the guy. He's an engineer who consults for biotech firms. He's kind of geeky but in a cute, social way. At the start of the meeting, before anyone else joined us, the guy said, "Hey, I heard you have MS."

When I stopped laughing, I managed to mutter, "Ya...um...ya." Then other people came into the room, the meeting started, and we moved on to work issues.

As you all know, I am all out there with the MS. So I wasn't mad or anything. It just struck me as really funny that he would a). know; b). care; and c). say something about it in such an offhand way at the start of a business meeting. I didn't mind exactly and I definitely preferred his tone to the whole pity response.

So, that was it. Then, last week he gave me a call and asked me if I minded talking to him about my MS. I assured him it was fine. I did wonder, but didn't ask what prompted his interested. I just assumed that his wife or sister or someone had just been diagnosed.

It turns out that this guy is very involved with MS research and education. I'm not sure why he's aligned himself with this particular cause (I've made up a back story about a disabled mom who was diagnosed with  PPMS before any of the disease modifying drugs came along, but I have no confirmation).

He is on some MS board and knows the head of a world-renowned MS Center in Atlanta, GA. So, during our conversation, I found out some shocking, new information about how Tysabri has been proven to help people with optic neuritis and has even shown some reversal of optic nerve damage. And, apparently the risk of PML--a rare brain infection you can read about here--is greatly reduced with the help of a new blood assay that tests immune competency and a virus that is present in more than 60% of those who get PML. 

So, the thing is this. I am not a neurologist. I cannot and would not prescribe myself Tysabri or any other medication. But I asked my neurologist about Tysabri about a year and a half ago--before my vision deteriorated to the point that I stopped driving.

The first time I asked about Tysabri, it was after my first or second vision with my new neurologist when she told me that I had more lesions on my MRI and that she was thinking about prescribing me something other than the Rebif. I said, "I've been reading about Tysabri."

Her response: "We don't prescribe that here." Clear as day. I assumed the "we" and the "here" were the MS Center where she practiced.

A month or two later, however, I was in the MS Center's infusion center getting my monthly Solumedrol infusion, and I met a woman who was there getting a Tysabri infusion.  I was disturbed and a little angry but I decided to trust my neurologist and to see what the next MRI looked like.

So, I waited. And then, the next MRI was this fall and I went through a bad patient rebellious phase and didn't make it into the neurologist for the follow-up appointment until December.  Again, I heard that there were more lesions and that she wanted to make changes and treat my MS aggressively since I am relatively young and not at all disabled.  Again, I asked about Tysabri. This time she said, "No, I don't prescribe that."

So, I decided to put on my big girl shoes and confront the issue straight on. "Um, the last time I was here, " I began, forcing myself to look the neurologist straight in the eye, "You said 'we don't prescribe Tysabri' but, in fact, I know there are patients who are getting it right here in the Infusion Center."

"You must have misunderstood," she responded. "I never said that you couldn't get Tysabri here, I said that I would not prescribe it. The risks of PML are too great and I don't think it would be responsible."

I didn't misunderstand. I know I didn't. I also know--now--that the Rituxan she recommended as the alternative, more aggressive treatment is not even FDA approved for MS and there is a risk of heart issues and the drug would, kill all my B cells and basically kill my immune system.

So, I've decided that I need a new neurologist who treats me like a big girl who is smart enough to handle all the information and make my own, grown-up decisions about my own disease. I do not want a doctor who picks and chooses what to tell me and whose bag of MS treatment tricks is fully stocked with all the options.

I have an appointment later this month with another neurologist at the MS Center. According to the patient coordinator I spoke with, this guy prescribes Tysabri and all the other MS medications. In other words, he is in possession of the full bag of tricks.  I'm going to talk to him about the new information I've received and see if Tysabri is right for me. And then, if he recommends it, I'm going to take the blood test to assess my immune competency and the presence of this virus to see, if I'm in the high risk group for PML. And, if I end up taking Tysabri and my vision improves, I am going to write a letter to the director of the MS center and to the Central New England chapter of the MS Society, and complain about the other neurologist by name. How dare she treat me like a stupid child. It is MY disease.

Battling MS Enemy #1

In my expert opinion (and those of us with MS are the TRUE experts, don't you think?), lack of sleep is Mortal Enemy #1 to MS.

When I don't get enough sleep or my sleep is interrupted and therefore unsatisfying, I am a BEAR to the awakening offenders--animal, human, or electronic.I also don't feel as good ALL DAY LONG when I don't get adequate sleep and I have been known to take it out on everyone and everything that crosses my path.

This morning, the culprit who started it all was my cat Bella followed by my lovely daughter Ruby. Since Ruby came from my body and lives in my heart, I've decided it's in all our best interests to blame Bella.

When we rescued Bella via the Milton Animal League Shelter, we were warned that she would not do well in a house with other pets. They did not tell us, though, that "other animals" includ her own reflection or animals on television.

They also did not mention the fact that Bella is offended by closed doors and scratches at them incessantly until they are opened.  Nor did they remember to tell me about her obsessive attraction to toilet paper rolls and her propensity to shred them down to the roll while we sleep. I guess the fact that she views any jewelry lying about as her personal cat toys slipped their minds, as well.

I keep a spray water bottle on my night table in anticipation of these nocturnal antics. Unfortunately, it's all become a game for Bella. If you spray her for batting about my jewelry, she just moves on to the toilet paper roll in my adjoining bathroom.  If I kick her out of the room and shut the door, she starts scratching until she is let in.. If I let her in and she jumps up on my dresser, she sometimes sees her own reflection and all hell breaks loose, with wailing and hissing at the mysterious white cat in the mirror.

I've had it. I love Bella but I need my sleep. Before I resort to locking her in the finished basement at night, and potentially waking up the entire neighborhood with her lonely cries, Ruby has volunteered her room as the banishment spot. So, I'm off to do my situps and then put  Bella's litterbox in Ruby's very large room and shut Bella in there for the night. 

I'm adding another thing to my "They shouldn't give MS to..." list. They shouldn't give MS to people with crazy cats that don't let them sleep.

Out and About

I am very fortunate to work full-time from home. I only go into the office about one day a month Since a lot of the staff travels, I don't see all my colleagues on the days I make an appearance in the office.

A couple times a year, though, we have work events after hours, usually something fun that gives us an opportunity to bond socially. Yesterday, we all went to a Boston Bruins hockey game with seats in one of the executive boxes that had a bar, cocktail tables, and comfy seats with an amazing view of the ice. Since I don't drink and I don't really understand or appreciate hockey, it was all a bit wasted on me. I wasn't really there for the cocktails or the hockey, though. I was making an appearance and schmoozing with my colleagues. Not that that requires a lot of work. I like them. Well, most of them.

Last night, I had the opportunity to talk to one particular salesman that I hadn't seen in several months. He's a nice enough guy. Truly, but he is a sad eyes kind of guy.

When I first met this man shortly after joining the company, I made the mistake of Facebook friending him. Or rather, I accepted his Facebook friend request because I didn't know how to say "no"without being rude. I got over that a couple months later when I decided to set up a work Facebook account and keep my regular Facebook account to personal friends that I know in real life and/or people I know through the online MS community. I have anorhwe special account for all my online cybersex buddies. I jest. Or do I....?

During the few months that I was connected via Facebook to this guy, he must have happened upon the fact that I have MS. As you know, it does not require CSI credentials to find this blog and I am kind of all out there and here and everywhere with my disease so I shouldn't be surprised when he started talking to me about the MS. The thing is, he doesn't exactly talk to me about the MS. He just gets the big eyes and hugs me (and I should point out that I don't work at a huggy place with huggy people). Then, he usually asks me how I'm FEELING. He says it exactly like that with the oral equivalent to capitalized italics in his tone. Well, last night he upped the pity ante. He said, and I quote, "How ARE you? It's so good to see you out and about."

Excuse me?

Out and about? OUT AND ABOUT? Am I bedridden or just housebound and pitiable?  I should mention that I think I looked pretty damn cute last night. I was a little tired but SERIOUSLY.....OUT AND ABOUT.

I did, of course, say none of this. Instead I smiled and moved on with my schmoozing, resting assured that I could say what I wanted to say here.  So...what did I want to say?

Maybe this:

"Seriously? You're pitying me? Really? Why, pray tell?  I have a wonderful job that I get to work at home. Yes, I have a disease but everyone has something and mine has a name. I live in one of the best parts of the country to have my disease treated. And by the way, I look damn good and not just for a woman with MS. So, please, do not pity me, do not give me sad eyes, and do not hug me unless you are just trying to press up against my fabulous body in which case, eat your heart out."

Farewell 2009!

It's been a year of love and loss. It's been a year of adjusting to change and of settling into what is. It's been a year of growth and of trying to pare things down to what's absolutely necessary. There has been laughter, tears, yelling...too much yelling...swearing, praying, reading, learning, writing, talking, listening, escaping, discovering, denying, accepting, bitching, moaning, giggling, sweating, sleeping...well, you get the picture. It's been a year of life and all that it has to offer.

No one could or would ever accuse me of living life in the safe spots. With each day that I live and breathe, I do it fully and completely, good and bad, as close to the edges as possible. It's a mental/spiritual/emotional thing and some days I live fully without ever taking my butt off the couch. And I can't even blame the MS. Some days I'm just lazy and choosing to live between my ears. :-)

A friend sent me a video today about self love. I think that's going to be my focus of 2010. I am going to do all that other stuff I've been doing--good and bad, I'm sure--but I'm also going to work on loving myself. Piece of cake, right?

Happy New Year! Blog on, babies.

The Creatures Are Still Stirring...

I suspect the excitement of Christmas tomorrow will lose out over the need for sleep and my children will soon fall asleep and allow Santa to do his work.  In the meantime, Happy Holidays to you an yours and may 2010 bring you all a boatload of really great stuff like:

• The passage of a pretty crappy and diluted but necessary first step in achieving health care reform (you have to walk before you can run, right?)
• Oral meds to treat MS
• Some serious progress in stem cell research to find a cure for MS and other currently incurable diseases
• Peace on earth
• True love.
  
• The demise of all those quilted handbags with paisley prints that are bizarrely popular but very, very ugly and remind me of a grandmother's knitting bag.
  

Reducing Stress

According to my neurologist, I need therapy, weight training, aerobic activity, and yoga--all in order to strengthen my body and relieve my stress. Hmmmm.

Don't get me wrong. These are all wonderful ideas but I'm not sure where I'm supposed to find the time or the money. I suppose I could quit my job but then how would I pay for it all? I could do some freelance work for extra cash but then there would be no time left in my already busy day. It's a conundrum, for sure.

And then there are the logistics of actually getting to these additional appointments. I could hire a chauffeur transport me a direct route that would be quicker than public transportation but....that's right...we are back around to the issue of paying for it. Do you think there are chauffeurs that work for gingerbread cookies?

Perhaps, I should buy a single lottery ticket each week. Do they still make $1 lottery tickets because I'm pretty sure that's all I could swing with my current budget? I could hope to win big and then quit my job which would free me up for 40+ additional hours per week.

Nah. I would probably end up getting addicted to gambling and before I knew it, I would be taking buses to casinos in Connecticut and spending all my rent money at the blackjack tables. I'd be evicted and, because I had no place to work, I would end up jobless, as well. Now THAT would be stressful. And I'm pretty sure they don't have yoga, weight training, aerobics, and therapy in homeless shelters.

I think I will just continue with my walking, sun salutation yoga sequences at home, going to free twelve-step meetings, writing, and up the prayer and meditation.

How about you? What free stress relievers do you have in your life?

New stem cell lines approved for tax-paid research - Yahoo! News

New stem cell lines approved for tax-paid research - Yahoo! News

Posted using ShareThis

A Newly Diagnosed Woman Afraid to Tell Her Children

I can't imagine hiding my MS from my children. How about you?

Video Envy

My paid blogging gig at HowIFightMS.com finally updated the videos. I watched my own submission, of course, to remember what I said and see how I was edited. I also did my Monday morning quarterbacking where I critiqued my own performance. My eyes were too wide, I laughed at myself too much, I sounded weird, I sat too long before saying hello, etc, etc, ad infinitum.

Then, I watched the videos for my four fellow MS bloggers on the site. I love and hated watching them. I loved learning more about my fellow MS bloggers--Bill, Kimberly, Lisa, and Jen. I loved hearing their knowledge, experience, humor, and positive perspective. But I hated the feelings of envy that crept into my psyche as I watched their videos. Here's what that mean little voice told me: They had better lighting, better backgrounds, seemed more comfortable in front of the camera, were more helpful, and were better prepared than I was. They used the tripod more effectively than I did and the video seemed to be steady and shot at the right angle.

I hate when I do that. I feel good about myself but then I let insecurity and envy errode my confidence. I feel proud of other people and but then I start to worry that those feelings must mean that those people are better than me.

Why do I do that?

I know that I am not unique and that, most times, my emotions are of the universal variety so perhaps you've felt this, too. So...why do we do that?

I want to be supportive and enjoy seeing my fellow human beings flourish. Believe it or not, I really don't want it to be all about me. I want to demonstrate my belief--in attitude and behavior--that there is no limit to positivity. You can reach your goals without keeping me from reaching mine. And vice versa. There is enough to go around. Happiness and goodness are not limited resources. That part of me that worries to the contrary is lying to me. Your strengths do not diminish mine or increase my weaknesses.

So...go check out the blog and if you give the rest of them more kudos than me, I will cry.

Visually-Impaired Two-Year Olds Shouldn't Walk in the Dark

I thought about titling this essay "The Perils of Public Transportation" or "A Cautionary Tale About The Importance of Asking for Help" or maybe "My Big Honking Bruise."


Last Friday night, I had an attack of the "Do Myself" demons. I had a haircut appointment after work which is about a 15-minute walk from my house. Piece of cake. Usually I go to a Friday night meeting one town away. Well, since I wasn't going to be home at the usual time I leave for the meeting I decided that I would get there myself rather than calling a friend for a ride.

I proudly used my new Google phone app which allows the GPS to determine my location and how to get where I want to go via public transportation. Much to my dismay, I discovered that I would have to take two buses to get there and that the first bus wasn't scheduled to arrive for about 30 minutes. There I was standing at a clearly marked, well-lit bus stop on a well-traveled sidewalk and for some reason that now seems absurd I decided to walk to the bus connection.

So off I went, thinking it would be about a 1 mile walk. I walked on the right side of the ride so I would see the bus stop. As I walked it got darker and darker. Then the sidewalk disappeared. Then the street lights disappeared. Then, I tripped over a rock buried in the leaves and fell on the ground, smashing the front of my hip on the rock as I hit the ground.

I wanted to cry. Well, I kind of did just for a second. Then I realized I was lying in the leaves at the side of the road and that I was not so much hurt as humiliated and really, really pissed off.

The anger helped me get up, brush myself off and keep on trudging. Plus, I had been walking for more than a mile and I figured I was closer to the bus stop than to home. I decided that when the first bus came by I would flag it down, take it to the transfer point, and then catch the second bus to my meeting where I would whine and complain about poor me and my bruised hip.

So, I kept on trudging, continually looking over my left should for the bus. I finally saw it and started waving. The only problem was that it was dark, there were no street lights, and I was wearing a black coat. Yup...it zoomed on by.

After another couple of miles walking carefully in the dark so I wouldn't trip over another rock, I reached the bus stop. I called a friend who lived in New York to cry and whine. I did not, though, call anyone who could pick me up and give me a ride either home or to the meeting.

Eventually, another bus came along but it I figured out that the meeting would be over before I ever got there. Instead, I took it to a TJ Maxx , spent an hour in retail therapy and then took a cab home.

The moral of the story: When I act like a two-year old, stamp my foot and insist on doing something all by myself, it does not make me independent. It makes me stubborn. Sometimes being able to ask for help is the only way I can achieve independence and freedom.

No Planes on This Runway

I had a blast being one of the models at the MS Society's Fashion Plates event last Friday. While walking the runway is not exactly old hat, it was wonderful to participate again and to see so many of the same wonderful women from last year.

Ruby was my photographer for the day. She had some help from Debbie Bettie who was a terrific chaperon for Ruby while I was in hair and makeup and strutting my stuff on the catwalk...baby.

Ruby definitely has an artistic eye and demonstrated her creativity while she and Debbie Bettie walked around Boston with Deb's digital camera before the show began.

<--Ruby and Christina watched all the fun from the Julie M. Baker (A.K.A. Lazy Julie) table.

MaryAnn is a great women I met during last year's event. I hope to stay in touch with her and a bunch of the other women who do not let MS stop them from living full and happy lives.

Miss New Hampshire, before and after hair, makeup, and wardrobe. She participated in the fashion show last year, too. I think MS has touched her life and it has become the cause of her "reign" as Miss New Hampshire. She is a wonderful woman and not at all what I expected of a beauty queen, although I found her crown a little intimidating when she wore it during the finale.

Tami, at least I think this is a photo of Tami, is escorted by a dapper volunteer. Tami is a long distance biker and has the legs to prove it. She participates in a two-day MS bike ride every year and I want to BE her when I grow up and/or get off the couch.

Our beautiful hair was coiffed by the generous and talented team at Salon Red. Our makeup was compliments of the lovely ladies at Lord and Taylor's Clinique counter. They all had great hair and makeup skills, naturally, but they also made us all feel like we were the most beautiful women they had ever seen--an awesome feeling to have as you walk out onto a runway in front of a couple hundred people.

This was the "other Julie" who was one of the newbie models. She was diagnosed about the same time as me but had one of those jerky primary care physicians who ignored her early symptoms. I'm very grateful that was not my experience.

Meet Claire, who is a terrific power of example and, unfortunately, she shares the disease of MS with her daughter who also participated in the fashion show last year. I don't think it's very common for there to be mothers and daughters (or fathers and sons) who both have MS. In my case, there is no one on either side of my family with MS, so the genetic link is out.

The names of these other beautiful MS models have escaped me but they were all visions as the showed off the finery and a joy to hang out with backstage, as well. Ruby tells me that all the models were quite sassy on the runway.

And now....drum roll please....here photographic evidence of my second foray into high fashion modeling.

I would have never picked out this gray and grown outfit and/or tied the big bow around the neck with this brown wool scarf, but I felt very hip strutting my stuff in this avante-garde outfit.

The stage manager of the event took this photo backstage. I loved the way I felt in this amethyst dress so much that I bought it (the dress, not the feeling.) I'm thinking of it as my Field of Dreams dress since I do not yet have an event to wear it. If I buy it, the invitations will come.

<-- You can tell I was sucking in while --> on the runway when you see me let it out in these two pictures as I came off the stage. :-) All I can say is, thank GOD for whoever invented spanx.

Ruby came backstage after the event and I took this picture of her with Miss Massachusetts.

I would be remiss if I did not thank others who supported this event, as well, including: Liz and Pete who donated to the cause by purchasing a ticket for a deserving woman with MS who couldn't afford to attend. Carrie and her PCA who also sat at the Lazy Julie table but who I never got to see; Jennifer who donated a Mary Kay gift certificate for the raffle baskets; Nancy, who donated a Real Life Yoga gift certificate, and Lisa Mullins who graciously offered to donate a host-led tour of The World studios at WGBH. (I'm joining the planning committee next year, Lisa, so I can make sure they take you up on this terrific raffle prize.) And to all my other friends, virtual and otherwise, who give me moral support and encouragement.

Get Involved : National MS Society

Get Involved : National MS Society

Random Funnies that Have Nothing to Do With MS

Why Women Can't Sleep -- This viral joke is unapologetically sexist and very, very funny.

Can people BECOME agoraphobic or just hermit-like if they stay in their houses too long and/or often? Since working at home, I've found myself shrieking when the mail carrier drops the mail in the slot each afternoon.

Why would someone do this and, more importantly, why would any self-respecting cat not scratch the person's eyes out for trying to shame him/her in such a way?

This story goes under the heading of Dumber than Dirt.

In Zane's lunch today, I put in apple slices and caramel. After school I asked him if he liked his snack and he told me that he couldn't bring that particular snack to school anymore. Why? Because his friend, Stephen, is afraid of caramel. I love 6-year olds.

I have a million funny stories about Ruby but she would kill me dead for sharing almost any of them. I will reach back in the way back machine, just to be safe. I will never forget some of the words that Ruby mispronounced when she was a toddler. Some of my favorites were "hoppycopper" (helicopter); "momocycle" (motorcycle); and the way she mixed up the name of a certain female body part with the name of her Auntie Regina.

I love The Onion and I actually enjoy the vegetable of the same name although I enjoy them cooked much more than raw.

This little piggy went to market. This little piggy stayed at home. This little piggy had roast beef. This little piggy had none. And this little piggy went “cough, sneeze” and the whole world’s media went mad over the imminent destruction of the human race, and every journalist found ut that they didn’t have to do too much work if they just did “Find ‘bird’, replace with ’swine’” on all their saved articles from a year ago, er, all the way home.

This one goes under the heading of: Really?????!!!!!!!!!!!! For a baseball game???????????? I wonder if she had acts associated with the price of the seats? A happy ending hand job for a single bleacher seat and a full night of S&M sexual slavery for a pair of seats behind home plate?

Dane Cook is a funny guy (and even cuter than he is now in this video from his younger days.) This got me thinking about my first job at McDonald's in South Lake Tahoe, Nevada the summer I turned 16. I know Suzie Ormand says when you do amazing work at an average job, your dreams will come true (or something like that) but I can honestly say I did NOT do amazing work at this job and I apologize profusely for anyone who ate one of the quarter pounders I made during the summer of 1980.

Jokes.com
Dane Cook - Crappy Jobs
comedians.comedycentral.com
Dane Cook Kool Aid Video More Dane Cook Videos Joke of the Day

And, finally, I love Jon Stewart and I'm thinking of reviving the insult of calling someone a douche bag except that I think it's outdated and sexist. Men don't douche, after all, and gynaecologists now discourage women from the practice anyway. But then again, maybe that's why it's a good insult...? I'm wondering what the male equivalent would be...? A jock strap? A colonic? A scrotum something or other?

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
11/2/09 in :60 Seconds
www.thedailyshow.com
Daily Show Full Episodes Political Humor Health Care Crisis

No Fair! (Stamp Foot)

OK. So this is a minor bi%&# session that I need to get out of my system.

I have Multiple Sclerosis, a chronic, incurable (so far), and potentially progressive neurological disease. It sucks, right? And I've gone out of my way to be positive and even share my good humor about it all with the world, right? Yeah me. I'm a fricken hero.

So, don't you think that means that I should be cut some slack with other physical issues? Shouldn't I be exempt from other illnesses?

But no, that is not the case. As I may or may have not mentioned here previously, I have Ulcerative Colitis (an inflammatory bowel disease that has some pretty terrible and embarrassing symptoms I will not be describing here or anywhere). My UC hasn't really been much of an issue since being diagnosed with MS. For the most part, it's been in remission. I even wondered, if it might have been related to the MS since it's an inflammatory illness and perhaps helped by the MS treatment.

Well, not lately. It is raging. So much so that even me, the bad patient, called my primary and received a referral to a gastroenterologist who I'm supposed to see this coming week, I think. This is, yet another, doctor's appointment for which I have no sick time to pay for the time off of work. (I spent the last of my "time off" watching my father die in hospice last spring, thank you very much, and have been living on borrowed time since.)

So, now I'm going to get yelled at by YET another doctor for not taking care of myself since I haven't been to see a gastroenterologist for the last--oh, I don't know--7 years or so, although I was diagnosed with UC in 1994 and I'm supposed to know better. And then, after the lecture, I'm going to have to make an appointment for a colonoscopy, which is basically drinking poison to clean out my GI tract and then letting a doctor stick a tube somewhere that I use as an exit only to take pictures of my empty colon to make sure I only have UC and not colon cancer.

SO NOT FAIR.

Seats Still Available!

Fashion Plates

Real women, real stories…all for a good cause!

Please join us at

Fashion Plates
A Luncheon and Fashion Show
to benefit the Central New England Chapter of the
National Multiple Sclerosis Society

Treat yourself to an enjoyable afternoon of food, fashion and fun!

Join us on
Friday, November 6, 2009
11:30AM-1:30PM

Sheraton Boston Hotel
Grand Ballroom
Boston , Massachusetts

Individual Seat: $100
Tables of 10 Seats: $1,000

For more information on Tickets, please view the event website

Presented by:

Lord & Taylor
and
Sheraton Boston Hotel

National Multiple Sclerosis Society
Central New England Chapter
101A First Avenue , Suite 6
Waltham , MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
msnewengland.org

The Vlog is Live!

I'm thrilled to give you the link to the How I Fight MS blog which is live today. This is why the NY hipsters came to my house.

I have to admit, I'm feeling a little shy. When they filmed me, I thought I was being incredibly profound and that I was the sexiest 45 year old with MS that I knew (in my house anyway). Now that I see myself in the video, I realize that I am just my usual kinda cute and kinda goofy me. I do feel like this IS me, though, which is kind of the point, right? Be my authentic self, share my experience, strength, and hope about what it's like to live with MS and hopefully help someone else in the process.

I hope you will subscribe to the entire blog or just my section (although you will miss out on the awesome stories of my fellow vloggers on the site). To see future videos, you have to opt in to receive mail from the drug company, but you do have the option to opt out later. Also, please let me know if there is something in particular you would like me to blog about in future videos and journal posts. Blog on, babies.

The Bad Patient

I think chronic illnesses should be given to people who are good patients. I am not a good patient. I have trouble keeping up with my various prescriptions, communicating with my insurance company, remembering my doctor's and testing appointments, getting referras before the actual appointment and all the rest of it. I am way too disorganized to have MS.

But I guess it's not just the medical stuff. Would I say I shouldn't be able to spend any money because I don't manage it well? Should I not be a mom because I'm flaky with the school papers? The fact is, I suck with all matters that require disclipline. It's not unheard of for me to pay my bills late, lose school papers, and space an infusion appointment until the day of. It's a situation of my own making. I am not a trust fund baby and I'm supporting my two children and myself on my income alone (unless you count the paltry sum of child support that X pays each month), but there are people with less who get it done and pay all their bills on time.

Is it possible for a leopard to change its spots and become a disciplined person? Or am I doomed to a life of last-minute lunch making, expired prescriptions, and telephone calls from creditors?

I'm Walking the Runway Again!

I'm thrilled to report that I will, once again, be an MS model in the Fashion Plates luncheon fashion show to benefit the Central New England Chapter of the MS Society. It's on Friday, November 6 at the Boston Sheraton Hotel. If you live in the Boston area, I hope you will consider supporting and attending this event. Click here or on the image above to learn more and/or purchase tickets. It's a really fun time with good food, nice clothes, and it's to support a great cause. I would, of course love to see you and be seen since I rarely look this put together! :-)


Click here to see the photo slide show from last year's Fashion Plates event, once again proving that women with MS can be damn sexy.

If you don't live in the Boston area or you can't come to the event, you can still provide support. The organizers are looking for donated products, services, or gift certificates for products or services to go into the raffle baskets. If you are interested in making a donation of some kind, please let me know via the comments section or email me at LazyJulie@gmail.com and I will connect you with the proper people. Or, if you don't want to go through me, please send donated items (by October 30) to:

National Multiple Sclerosis Society
Central New England Chapter
101A First Avenue , Suite 6
Waltham MA 02451

ATTENTION: Kara Kelley