Thursday, December 31, 2009

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.

Thursday, December 24, 2009

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.

Tuesday, December 15, 2009

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?

Wednesday, December 02, 2009

A Newly Diagnosed Woman Afraid to Tell Her Children

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

Saturday, November 21, 2009

Video Envy

My paid blogging gig at 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.

Thursday, November 19, 2009

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. 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.

Friday, November 13, 2009

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

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 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.

Wednesday, November 04, 2009

Tuesday, November 03, 2009

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.
Dane Cook - Crappy Jobs
Dane Cook Kool Aid VideoMore Dane Cook VideosJoke 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 StewartMon - Thurs 11p / 10c
11/2/09 in :60 Seconds
Daily Show
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Political HumorHealth Care Crisis

Monday, November 02, 2009

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.


Tuesday, October 27, 2009

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

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
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

Monday, October 19, 2009

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.

Sunday, October 11, 2009

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?

Tuesday, October 06, 2009

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 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

Saturday, September 26, 2009 Political Action: Video: Will Ferrell stands up for the real health care victims

Health Care Reform now. A public insurance option now. I'm just sayin'.

Monday, September 14, 2009

The Eternal Question and Patrick Swayze

My knees are killing me today. Is it that my knees are 45 years old and they went dancing for a few hours two nights ago? Or is it MS?

I'm tired today. Is it that I need more than 8 hours of sleep or that I didn't drink enough coffee? Or is it MS?

I'm very hot today (and not in a good way) even with the AC on. Is it pre-menopause hot flashes or maybe the heat emanating from my laptop? Or is it MS?
Patrick Swayze died of pancreatic cancer at the age of 57 today. This news has absolutely nothing to do with the Eternal Question in this post, but he will be missed. Patrick Swayze made the pottery wheel scene in Ghost incredibly sexy and who doesn't love it when Baby runs into his arms in Dirty Dancing?

I read a poem on an MS Facebook group today about how difficult it is to have MS. It's true but I bet Patrick Swayze's family wishes that he was dealt a hand that included MS and not pancreatic cancer.

Sunday, September 13, 2009

Can you spare a spoon?

It's Sunday night and I'm spoonless. Well, apparently, I have at least a dessert spoon left since I'm still awake, writing, and watching the season finale of Design Star. My body though, feels like a piece of burnt toast that fell into a sink full of soapy water. My knees hurt and energy is just seeping out through my pores.

I had high hopes for the weekend and thought I was conserving energy appropriately by laying around during the day. Not so much. I went out dancing last night and it was too much. The company was great and the music was awesome but I am too old and too MS-y to start dancing at 10pm. Plus, I thought I was good to get a ride home to send my babysitter on her way at 12:30. Again, not so much. I ended up spending $40 on a cab ride home which was not part of my entertainment budget for the evening. Live and learn. I will save the dancing for non-steroid weeks when the kids are with their dad and the babysitting meter isn't running.

The dancing isn't the only spoon-robber in my life. I'm not sure whether or not this is MS-related but my old Ulcerative Colitis (UC) symptoms are back with a vengeance. This is not One Woman's Journey Through the GI Tract so I will spare the gory details. Suffice it to say that I am pretty weak and depleted as a result of my symptoms. I know I need to call the doctor, but which one? I'm thinking I need to call my GP to get a referral to a new GI doctor since I haven't been to see one in at least 4 years. I dread it because I know I will get yelled at for not keeping up with my colonoscopies or maintenance meds. I hate the whole "non-compliant patient lecture."

I haven't had GI issues since I was diagnosed with MS. This is somewhat notable since I was diagnosed with Ulcerative Colitis (UC) about 15 years ago and I've had symptoms on and off all that time. I actually used to think of UC as a horrible disease but MS certainly put it in it's place. I read a study somewhere along the way (that I'm too tired to search for right now) that said that an inordinate number of people with MS have either UC or Chrone's Disease. The findings indicate that there is some sort of link between the two disease groups that are both thought to have autoimmune components. I guess I assumed that was true for me and that either the MS disease-modifying drugs and/or the Solmedrol had "fixed" the UC. Apparently not since I'm still taking the Rebif and the steroids and now I have UC symptoms again.

I'm taking iron pills to make up for the loss of nutrients but I'm even thinking of starting to eat red meat again until I feel better. I'm still reading Julie and Julia and I just got through the part where's she's cooking organ meats. Julia Child's recipe for kidneys sounds absolutely delicious. I doubt I can get the kids to try it but maybe I could pawn it off as steak.

Now off to bed.

Saturday, September 12, 2009

Rainy Weekend Meetup

I slept 12 hours last night (to make up for the steroid-induced insomnia the night before) and I'm enjoying a lazy day today. It's raining outside so the kids are playing inside.I love laying around on rainy days watching HGTV, listening to the kids play (without too much bickering), and having soup for lunch. We even made homemade strawberry/pineapple sorbet for dessert.

I used to feel guilty when I laid around and was not "productive" but not anymore. MS has taught me that rest and relaxation are completely valid and acceptable pastimes. I think it also helps the kids see that our every moment does not need to be filled with scheduled activities. Contrary to what our culture tells us, we don't always have to be go, go, going.

I'm saving up spoons to go out dancing tonight with an MS Meetup friend and some of her friends. In case you're not familiar with the whole Meetup thang, here's a definition from their website:

"Meetup helps people find others who share their interest or cause, and form lasting, influential, local community groups that regularly meet face-to-face."

Click here to find about about joining or starting a Meetup group in your area. In addition to the MS Meetup group, I've also joined a group of local storytellers to learn more about how to get started in this performance art. There are Meetup groups focused on any imaginable topic. Maybe you want to meet other people with MS or maybe you want to find other people who are single moms, people who like to eat sushi, or toy train aficionados.

Friday, September 11, 2009

This Day

I only got about 3 hours sleep last night but I actually didn't feel awful this morning. I'm going to stay on track with exercising and eating healthy to quell the negative effects and capitalize on the benefits of the Solumedrol infusion. And next month, I will definitely take the Benedryl on infusion day.

Today is the 9th anniversary of 9/11. I would feel remiss if I did not write about that fateful day but I'm not sure this is the place for it. If you're interested, check it out on my other blog.

Thursday, September 10, 2009

Not Sleepy Yet

And the post-Solumedrol rant continues...

It's almost midnight and I'm flipping channels and not sleepy. I must turn off the TV and at least go upstairs and read and TRY to fall asleep. My fear is that I will finish Julie and Julia and still not feel sleepy. And, because I am so wired and racy, I won't even truly digest what I'm reading. Do people who take steroids for muscles get like this? My steroids are supposed to stop MS-related inflammations and fatigue so it's probably a different type and I get it via an IV (rather than in a Major League Baseball locker room).

I know someone who takes steroids for muscles. I know he regrets telling me, too, but neither one of us can undo the conversation. If I could fly around the world backwards and turn back time, there are many, many things that would come before that revelation on my "Do Over" list but still...

I'm not sure if he suffers from 'roid rage but I suspect it makes him a little squirrely. He has conversations like the ones I'm having in my head, via facebook and twitter, and in my blog today. I got a lot of work done today, which was nice. The steroid user does, too. And, he has some pretty ripped muscles, too. I do not have that but, then again, I do not spend hours a day (or even a week) in the gym either.

I've been thinking about joining a gym again. I've joined many in the past with different levels of commitment and success and setting up a regular workout routine. I think I have to join WITH someone. The time I was most successful is when X and I went to the gym together in the mornings before work (pre-kids obviously) and a bunch of women friends belonged and worked out in the mornings, too. I loved it. It was social and physical and my workout was done by 8am everyday.

Anyone in the Boston area want to join a gym with me and make a commitment to work out together 3 times a week? In the meantime, I think I want to formalize my current walking and yoga routine. But then again, if I do not and blog about it here, I will feel like a piece of shit...again...if/when I don't stick to it.

Discipline and sticking to healthy habits is not one of my strong suits. Are their any former rebellious bleaders (see previous post for explanation or read Julie on Julia for a definition of that word) out there who are now poster children for staying committed to positive and healthy habits in their lives? I think I need to find a payoff---besides the obvious. I mean, maybe I need to set a goal. That worked when I did the Boston to New York AIDS Ride and the Avon Breast Cancer 3 Day. Maybe I need to figure out what to do next. I hate running and I don't think it would be good for my 45-year old, myelin-challenged body to start. I've been thinking of Pilates but I don't think they have charity Pilates events or competitions. I could go back to bike riding but I am limited by daylight hours and bike paths because of the whole visual impairment thing. Or maybe I need to fall in love with an active person who wants to ride a tandem with me on the back. we could talk and ride and solve all the world's problems while we stay fit and active. In the meantime, the kids and I are definitely going on a bike ride to Pope John Paul park via the bike path with Ruby on her bike and Zane on the tandem-style bike buddy behind me.

I need to find a way to go dancing more, too. I love to dance and it's a very good way to stay fit and feel sexy. I say that in Cambridge there's a dance center with all kinds of cool classes for the fall. Maybe I can start with that commitment. You know, an every Saturday something. I will just have to make sure I have lots of babysitters on deck for the weeks that the kids are not scheduled to go with X and/or he bags because his work comes first. Grrrr.

I could fill the entire screen with a steroid-induced rant about him. Grrrr. But I won't. We have control over so very few things so I am not going to give up control over my focus and energy that easily. I am going to focus on positive people who bring positive things into my life. I need to focus on the solution and not the problem. I need to accept the things I cannot change and change the things I can: namely ME, my attitudes and behaviors.

But right now...I need to go to bed. And, in an effort to not delay that any further, I am not even going to read over and edit this. Spell check is sufficient.

Drip, Drip, Drip

Today was my September Solumedrol drip. To mark the occasion of this month's infusion of my energy elixir, I am dedicating this song to all of you, my blog readers--or bleaders, as Julie Powell likes to call them. (Have you read Julie on Julia and or seen the movie, Julie and Julie?--I highly recommend them both. They have been incredibly inspiring to me as a writer and a blogger. Can you imagine starting a blog because you hated your job and liked to cook and a year later having a book published and a few years later having that book adapted into a movie written by Nora Ephron and starring Meryl Streep?!

Ok. I just read back over what I wrote and I think it's pretty obvious, even to me, that I am experiencing some racing thoughts as a result of my infusion...which may mean that I will be writing again this evening....possibly incoherently. I hope not. Not because I don't want you amuse you or myself but I am trying not to stay up all or most of the night since I have work and then parenting tomorrow. I am trying to take it easy and I'm limiting the caffeine. Not so much the sugar since I ate a sleeve of kosher tea biscuits and then justified that I had no choice to get the metallic taste out of my mouth--one of the side effects of the Solumedrol. Except I don't really recall tasting metal in my mouth. I do, however, fondly recall the simple, comforting sweetness of the tea biscuits that I bought on a whim while online grocery shopping because they were only 69 cents a pack. I managed to turn it around though when X picked up the children for a couple hours. I finished work and marinated a salmon fillet in ginger and soy sauce before putting it on my George Forman Grill--the best damn kitchen item I ever got off Craigslist Free Stuff. I also steamed squash from my neighbor's garden with salt-free seasoning. It was delicious and quite healthy, too.

But I digress...again. Enjoy the song and forgive me for any current or future steroid-induced rants.

Wednesday, September 09, 2009

Primetime Health Care Reform

President Obama's Health Care Speech to Congress was a great way to fight fatigue. If you didn't get a chance to see it, click on the link to watch the speech and/or read the transcript. If you have MS or love someone who does, this is pretty important stuff.

I'm thrilled that the President's plan includes a public health care option. It's also pretty fricken awesome that insurance companies will no longer be able to deny coverage for pre-existing conditions. And, the plan will FINALLY put a stop to recision (an evil and immoral practice) and people won't have to worry about insurers finding ways to stop covering them when they get sick.

Because I live in Massachusetts, I don't have to worry about MS (a pretty damning pre-existing condition) making it difficult for me to find insurance. But that is currently not the case for many people living in America. That may not be the case for you.

I cried when the President read Senator Ted Kennedy's final words about health care reform and the cameras showed his widow sitting next to Michelle Obama. Kennedy was absolutely right: "If this plan fails, it is a failure of the character of our country." No one, absolutely no one should die or be homeless because they can't afford to be sick.

I enjoyed watching the miserable Republicans squirm when the President called them out on all the blatant and mean-spirited lies they've told about death panels and senior citizens losing their Medicare coverage. They should be ashamed. I fear, though, especially after hearing the Representative from South Carolina disrespectfully call the President of the United States a "liar," that they will just twist the speech to continue their campaign of obstruction and fear.

I know I am not the least bit objective, but I really don't get the opposition to this health care reform plan. Even if it isn't exactly what they want, don't they recognize that we have to do something? What is their ultimate goal in obstructing change with no real alternative? Is it simply about saving their own asses by appeasing big corporations? Are they trying to keep some money in the coffers to pay for the next war, pay raise, or bailout? How do they look at themselves in the mirror at the end of the day? Perhaps, they work really hard to shield themselves from the truth and ignore the millions of Americans who are literally dying for real health care reform.

My body is tired but my spirit is fired up to support President Obama's health care reform bill. I hope you will join the cause with me.

A Fatigue Haiku

Waves of exhaustion
Crest, break, threaten to crush me
Hang on. Stay upright.

Fatigue is insidious. I don't know it's there until my eyes are closing with my laptop still powered up and open on my lap. It's like a flash flood that comes out of nowhere. Thank God my rescue boat is only a day away. I have my monthly solumedrol infusion tomorrow and that will help. After tomorrow, I'll be back to normal...more or less, if I let the medicine do its work and not fall into the trap of the steroid high and stay up doing stuff that feels really important at 3am but not so much the next morning. I need to get up early, do some work, get the kids off to school, go to the MS Center, get my infusion, come right home, eat a good lunch, do some more work, eat a good dinner, limit caffeine and sugar, and do relaxing things before my usual bedtime like legs up the wall (yoga) and reading. Let's see if writing that out loud helps me do what I need to do.

Monday, September 07, 2009

Happy Labor Day Birthday to MS!

When I remember Labor Day Weekend 2007, I think of only one thing: MS diagnosis. Rather than picnics and beach days, I had partial blindness, a plethora of eye examinations, multiple specialists, an emergency MRI, and, ultimately, the shocking news that I had an incurable, neurological disease I knew nothing about. The rest is kind of a blur.

It's now two years later and Labor Day Weekend is still all about MS, but in a much different way.

This year, an ad agency's creative team came to my house to shoot the B roll for my section of a new MS blog that's launching next month. I've been selected to be one of five video bloggers featured on the site. Once it's up and running, I will provide a link here for anyone who's interested. The book and this blog soldier on and will, hopefully, be inspired by this separate but complementary project.

Here are the highlights of my incredible video shoot that I like to call the Labor Day Weekend MS Birthday Caught on Camera:

Picture this. A large, black Suburban with tinted windows pulls up in front of my house. The door opens and two men and three women step out, each one more beautiful than the one before. If you were to look up New York hipster in a visual dictionary, any of these five people could have been pictured.

Hipster #1 was Hoover, who was, and still is I imagine, a slender Asian man. I can't be sure but he may have been an older looking 20-something or a younger looking 30-something. It was hard to tell. He wore a ponytail, skinny jeans, and a cotton scarf that came on and off throughout the day. In case you are wondering (and I was), Hoover was named after the dam, not the vacuum cleaner. I'm pretty sure he was the creative director for the entire project but I'm not positive. During our time together, he showed me the design storyboard for the blog, went through my closet to pick outfits (thank God it was clean!), and took still photographs of me in the yard.

Hipster #2 was Valerie, an absolutely gorgeous woman in her mid 20s. (Big sigh. Can you tell I have a bit of a girl crush? Or is it just that I want to be her--a creative, cool 20-something living in NYC?) The day of the shoot, she was dressed in black from head to toe. Her dark blond/light brown hair had, at one time, been shaved on the lower third or so. I know this because she wore her hair up to show off the different levels. I don't know her job title (Director, maybe?), but while she was at my house, Valerie operated the camera, approved my clothing, and told me what to do next (e.g., chop veggies, type on the computer, do yoga in the yard). She also made me feel like I was absolutely fabulous for which I will be eternally grateful. Without that kind of ego stroking, it can be a bit disconcerting to have a camera pointed at you for several hours.

Hipster #3, Natasha, is also in her mid 20s. She wore low-rise jeans rolled up into capris and a short-sleeved green t-shirt that revealed a colorful graphic tattoo on her upper arm. I don't know if it was large enough to constitute a "sleeve" tattoo but it was very visible. She had beautiful, bronzed skin and incredibly white teeth. Natasha seemed to do whatever Valerie and Hoover told her to do. She also helped me set up my flip camera and tripod for the video shoots I'll do on my own. It was her first trip to Boston and, although she had to fly back the same day, she planned to return in a few days on her way to the Vineyard with a guy she was dating.

Hipster #4 was Stefan. He wore jeans and a plaid shirt that, believe it or not, was cool. (I'm not usually a big fan of plaid and often make fun of people who wear it.) It may have been a vintage item. He also wore a funky hat that may have been vintage, too. It looked like one that Fred MacMurray might remove when he came in the door on My Three Sons. I'm pretty sure Stefan is the content producer/writer and he was probably the oldest of the visiting hipsters He may have been my age but I'm not positive. When I was asked to say to the camera, "Hi! I'm Julie," he was the only one who laughed in recognition when I referenced Bernadette on the original ZOOM cast, complete with her signature hand motion. He was very kind an encouraging during a conference call prior to the shoot and I definitely felt like he had my back the entire day.

Hipster #4 was Penny. Although she was only about 30, Penny seemed like the grown-up in the group.An attractive Asian woman, she wore typical black, gray, and white NYC business attire. She was the account rep/client liaison so she was sort of made sure everyone, including me, had everything they needed. I think she is a bit of a workaholic since she mentioned checking email from a recent vacation to Greece. She presented the credit card to pay for lunch.

I am not a shy person and I don't usually tire of the spotlight. This day, however, was even a bit much for me. It was all about me all day. One piece of really nice, dark chocolate can be great but a whole box leaves you feeling more than a little sick if you eat it all at once. (I'm the really nice piece of dark chocolate, in case you're wondering.) By the time the hipsters piled into their Suburban to drive to the airport and catch the shuttle back to the Big Apple, I couldn't wait for the kids to come home since I was pretty sure they wouldn't even think of asking about my day.

Happy Birthday, MS. I bet I outlive you.

Wednesday, August 26, 2009

Health Care and RIP Ted

It's the morning after publishing this post and I just learned of the passing of Senator Ted Kennedy. Because of his commitment to health care for all, I think it's more important than ever that we pass the best health insurance reform we can.

This one goes under the heading of WTF.

Because of the rising costs of premiums, my employer has decided to switch health insurance carriers. Because I live in Massachusetts where insurance companies aren't allowed to discriminate based on pre-existing conditions, I wasn't worried about my MS treatment being covered.

But this is insurance we're talking about.

To help us with the transition, we had an information session with HR and representatives from the new insurance company. Just before the meeting, I learned that my boss was a little pissed off that he would still have to pay a $150 co-pay for an MRI. "Still?" I inquired since I've had several MRIs since I began working there and I haven't paid anything for a co-pay. We both assumed it was because his MRI was ordered after an injury and mine were used to determine my course of treatment for MS.

During the question and answer period of the information session, I raised my hand and asked the insurance rep if they waived the MRO co-pay for people with a diagnosed neurological condition...say...Multiple Sclerosis?

The rep told me she would check and let the HR department know the answer.

Well, today I got the answer and here it is, directly cut and pasted from an email from the insurance company:

Q - Would we exclude the MRI HTI copayment for members with a multiple sclerosis diagnosis?
The only exception listed is for members with a current cancer diagnosis. Each and every claim must be billed with the cancer diagnosis in order for the HTI copay to be waived. The copayment would apply in all other circumstances.

The good news is that my boss is taking this to a higher level--more evidence that I work for a compassionate organization and not an evil insurance company.

This recent event made the following video and the ongoing health insurance reform debate even more relevant to me as a person with MS. I sincerely hope that Congress has the good sense to keep the public health insurance option.

Friday, August 14, 2009


Several of my fellow MS bloggers have already noted this important news about Canadian researchers finding a treatment called GIFT 15 that has successfully reversed MS in mice. Thanks, everyone who I've already forgotten about because I'm on my first day post Solumedrol infusion and I'm a little sleep deprived. You know who you are and you rock as news breakers. With this one, I'm going to play like Fox News. I am taking the news item, plagiarizing your work, twisting it with sensational graphics so I can not feel so bad about being scooped. :-)

Here are all the links I could find to articles about this research. I won't try to restate what has been reported by professionals who, hopefully, do all the fact checking I have no time or concentration abilities to do right now:

Thursday, August 13, 2009

Health Care Reform and MS

If you have MS or love someone who does, I urge you to pay attention to what's going on with National Health Insurance Reform. This issue affects all Americans, but for those those of us who live with chronic, potentially progressive diseases, it could mean the difference between getting and keeping health insurance so we can receive the proper treatment and having to choose between paying for the meds that keep us well and silly little things like rent, food, and utilities.

Regular readers know that I make no secret of my support of President Barack Obama--before and after the election. On this topic, though, I have to tell you that I wish he, his advisers, and Congress could do more.The name alone, Health Insurance Reform, is quite quite a step down from Health CARE Reform. Health CARE includes more than just insurance. Health CARE should include alternative medicine, palliative care, health education, pharmaceutical funding and drug pricing, embryonic and adult stem cell and other research funding, and much much more.

But I digress.

I'm not 100% thrilled with the plan or happy about what it's left out, but I'm afraid if we hold out for something perfect, we will--once again--miss out on the opportunity to make real change in people's lives. Sometimes change has to happen incrementally. I believe the current plan is a good start and, rather than reinvent the wheel, I will use the words from and email I received from David Axelrod, Senior Adviser to the President. I know some people in pretty high places, huh? Me and the other 500,000 people on the distribution list.

8 ways reform provides security and stability to those with or without coverage
  1. Ends Discrimination for Pre-Existing Conditions: Insurance companies will be prohibited from refusing you coverage because of your medical history.
  2. Ends Exorbitant Out-of-Pocket Expenses, Deductibles or Co-Pays: Insurance companies will have to abide by yearly caps on how much they can charge for out-of-pocket expenses.
  3. Ends Cost-Sharing for Preventive Care: Insurance companies must fully cover, without charge, regular checkups and tests that help you prevent illness, such as mammograms or eye and foot exams for diabetics.
  4. Ends Dropping of Coverage for Seriously Ill: Insurance companies will be prohibited from dropping or watering down insurance coverage for those who become seriously ill.
  5. Ends Gender Discrimination: Insurance companies will be prohibited from charging you more because of your gender.
  6. Ends Annual or Lifetime Caps on Coverage: Insurance companies will be prevented from placing annual or lifetime caps on the coverage you receive.
  7. Extends Coverage for Young Adults: Children would continue to be eligible for family coverage through the age of 26.
  8. Guarantees Insurance Renewal: Insurance companies will be required to renew any policy as long as the policyholder pays their premium in full. Insurance companies won't be allowed to refuse renewal because someone became sick.
Learn more and get details:

8 common myths about health insurance reform
  1. Reform will stop "rationing" - not increase it: It's a myth that reform will mean a "government takeover" of health care or lead to "rationing." To the contrary, reform will forbid many forms of rationing that are currently being used by insurance companies.
  2. We can't afford reform: It's the status quo we can't afford. It's a myth that reform will bust the budget. To the contrary, the President has identified ways to pay for the vast majority of the up-front costs by cutting waste, fraud, and abuse within existing government health programs; ending big subsidies to insurance companies; and increasing efficiency with such steps as coordinating care and streamlining paperwork. In the long term, reform can help bring down costs that will otherwise lead to a fiscal crisis.
  3. Reform would encourage "euthanasia": It does not. It's a malicious myth that reform would encourage or even require euthanasia for seniors. For seniors who want to consult with their family and physicians about end-of life decisions, reform will help to cover these voluntary, private consultations for those who want help with these personal and difficult family decisions.
  4. Vets' health care is safe and sound: It's a myth that health insurance reform will affect veterans' access to the care they get now. To the contrary, the President's budget significantly expands coverage under the VA, extending care to 500,000 more veterans who were previously excluded. The VA Healthcare system will continue to be available for all eligible veterans.
  5. Reform will benefit small business - not burden it: It's a myth that health insurance reform will hurt small businesses. To the contrary, reform will ease the burdens on small businesses, provide tax credits to help them pay for employee coverage and help level the playing field with big firms who pay much less to cover their employees on average.
  6. Your Medicare is safe, and stronger with reform: It's myth that Health Insurance Reform would be financed by cutting Medicare benefits. To the contrary, reform will improve the long-term financial health of Medicare, ensure better coordination, eliminate waste and unnecessary subsidies to insurance companies, and help to close the Medicare "doughnut" hole to make prescription drugs more affordable for seniors.
  7. You can keep your own insurance: It's myth that reform will force you out of your current insurance plan or force you to change doctors. To the contrary, reform will expand your choices, not eliminate them.
  8. No, government will not do anything with your bank account: It is an absurd myth that government will be in charge of your bank accounts. Health insurance reform will simplify administration, making it easier and more convenient for you to pay bills in a method that you choose. Just like paying a phone bill or a utility bill, you can pay by traditional check, or by a direct electronic payment. And forms will be standardized so they will be easier to understand. The choice is up to you - and the same rules of privacy will apply as they do for all other electronic payments that people make.
Learn more and get details:

8 Reasons We Need Health Insurance Reform Now
  1. Coverage Denied to Millions: A recent national survey estimated that 12.6 million non-elderly adults - 36 percent of those who tried to purchase health insurance directly from an insurance company in the individual insurance market - were in fact discriminated against because of a pre-existing condition in the previous three years or dropped from coverage when they became seriously ill. Learn more:
  2. Less Care for More Costs: With each passing year, Americans are paying more for health care coverage. Employer-sponsored health insurance premiums have nearly doubled since 2000, a rate three times faster than wages. In 2008, the average premium for a family plan purchased through an employer was $12,680, nearly the annual earnings of a full-time minimum wage job. Americans pay more than ever for health insurance, but get less coverage. Learn more:
  3. Roadblocks to Care for Women: Women's reproductive health requires more regular contact with health care providers, including yearly pap smears, mammograms, and obstetric care. Women are also more likely to report fair or poor health than men (9.5% versus 9.0%). While rates of chronic conditions such as diabetes and high blood pressure are similar to men, women are twice as likely to suffer from headaches and are more likely to experience joint, back or neck pain. These chronic conditions often require regular and frequent treatment and follow-up care. Learn more:
  4. Hard Times in the Heartland: Throughout rural America, there are nearly 50 million people who face challenges in accessing health care. The past several decades have consistently shown higher rates of poverty, mortality, uninsurance, and limited access to a primary health care provider in rural areas. With the recent economic downturn, there is potential for an increase in many of the health disparities and access concerns that are already elevated in rural communities. Learn more:
  5. Small Businesses Struggle to Provide Health Coverage: Nearly one-third of the uninsured - 13 million people - are employees of firms with less than 100 workers. From 2000 to 2007, the proportion of non-elderly Americans covered by employer-based health insurance fell from 66% to 61%. Much of this decline stems from small business. The percentage of small businesses offering coverage dropped from 68% to 59%, while large firms held stable at 99%. About a third of such workers in firms with fewer than 50 employees obtain insurance through a spouse. Learn more:
  6. The Tragedies are Personal: Half of all personal bankruptcies are at least partly the result of medical expenses. The typical elderly couple may have to save nearly $300,000 to pay for health costs not covered by Medicare alone. Learn more:
  7. Diminishing Access to Care: From 2000 to 2007, the proportion of non-elderly Americans covered by employer-based health insurance fell from 66% to 61%. An estimated 87 million people - one in every three Americans under the age of 65 - were uninsured at some point in 2007 and 2008. More than 80% of the uninsured are in working families. Learn more:
  8. The Trends are Troubling: Without reform, health care costs will continue to skyrocket unabated, putting unbearable strain on families, businesses, and state and federal government budgets. Perhaps the most visible sign of the need for health care reform is the 46 million Americans currently without health insurance - projections suggest that this number will rise to about 72 million in 2040 in the absence of reform. Learn more:
Visit to see video responses to the incredibly vicious and insidious attacks on this important legislation. And, if you don't know how to reach your elected officials, click here and let them know how very important it is to pass Health Insurance Reform now. It really is that important.