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.