Thursday, April 23, 2009


Why does Dr. Gregory House and his team of diagnosticians always need to rule out MS when someone shows up with bizarre symptoms?

Why do gay men generally make such wonderful friends to straight women but lesbians don't, as a rule, make great friends to straight men?

Why do hot dogs come 10 to a package but hot dog buns are sold in bags of 8?

Why does an emergency room have to treat a person who's dying of a heart attack even if they have no money or insurance but a pharmacy doesn't have to give away free drugs to prevent a heart attack?

Why do the channels on my cable box jump from 101 to 166 and then all the way to the 200s? What happened to 1, 2, 3, 4, etc.?

Why do we keep caged guinea pigs for pets but not caged squirrels or chipmunks?

When you have enough junk in your trunk to only inject medication into your ass and never repeat the same spot for at least a year, why does the MS nurse insist that you move your injection sites around to other body parts?

Why was a show about Nazi Germany turned into a popular sitcom?

Why do we procrastinate things that we like that will bring us rewards we like even more?

Why do people post their most intimate thoughts and feelings on blogs and social networking sites but lie and say they are "fine" when a friend or neighbor asks "How are you?"

Why is there a restaurant called "Hooters" featuring large-breasted women wearing tight T-shirts but not a restaurant called "Buns" with handsome waiters wearing tight shorts?

Why is a teacher's median annual salary about $40,000 but a dentist makes $135,000 when they both go to school for about the same amount of time and the teacher sees your children 200 days of the year and the dentist usually sees them a few days a year?
Why is pink associated with girls and blue with boys?
Why does MS have a name that is difficult to pronounce even if the person saying "Multiple Sclerosis" doesn't have any trouble with their speech and people with this disease sometimes have trouble with their speech?

Friday, April 17, 2009

These feet are made for sitting.

My feet are still numb. It's been about a week and a half. I've had my solumedrol drip. I'm playing a really slow game of phone tag with the neurologist. The only reason I'm even calling her back is because I'm "supposed to." There is no magic pill. There is no magic anything. I have MS. No news there.

I'm taking the Fung Fah Funk bus to New York tomorrow to hang with mysself in the city and then meet up with my buddy Eric for dinner and a play. I want to wear high heels and stride down the streets of Manhattan, looking hip, sexy, and young. Probably not going to happen. But, I can walk until I need a rest and sit in a park, a cafe, or a museum and watch the city strut past. I want to be a main character from Sex and the City but, instead, I will be an extra. I'm still in the show!

Tuesday, April 14, 2009

Multiple Sclerosis News

Every now and then I do a little searching for news about MS. Here are my latest results:
  • A new US drug trial for secondary progressive MS. This link is to a drug company so, of course, they are biased and you have to take what they say with a grain of salt. It's always good to hear about drugs that target the progressive element of this disease so those of us with relaxing and remitting MS don't feel like we in a race and if we pass on to secondary or primary progressive, we are shit out of luck for treatment.
  • Can I just say again how grateful I am to President Barack Obama for reversing the ban on embryonic stem cell research? This study shows incredibly promising news for the use of embryonic stem cells and something called "oligodendrocytes" which is used to create myelen--an incredibly important substance that is hard to come by in people with MS. According to this second article, this same embryonic stem cell research could also lead to repairs of nerve damage in people with MS--something I am personally REALLY excited about.
  • Phil Keoghan, the host of the only my absolute favorite reality show, The Amazing Race, is biking across the United States to raise money for the National MS Society. Follow his progress, donate, and find out when he'll be near you at this site.
  • A man with MS from Sebastopol, Pontypool (say that three times fast, if you can even pronounce it), is being recognized for his amazing fundraising and advocacy on behalf of MS causes. Read all about Ian Williams in the South Wales Argus.
  • The drug news is good but the FDA bureaucratic bullshit is not. Regulatory delays result in shares dropping which results in drug companies moving on to drugs that can make them money faster. Judge for yourself.
  • Can you say "no more MS shots?" I can! Well, not yet, but soon, according to this news.
  • I love cats and I am truly enjoying my new kitty, Bella. I must admit, though, that I despise the smell of cat food. I am rethinking this intolerance after learning that cat food could lead to a cure for MS! I hope I don't have to eat it, but I wouldn't totally rule it out either.
  • I recently learned that a woman who goes to the UU church is an acupuncturist and has worked with people with MS. I've found a lot of relief in the past with other things through acupuncture so I am definitely going to give her a call. This article appears to concur with my decision.
  • This article discusses the possibility of worm research helping scientists figure out how to regenerate nerve cells in people with MS. And, no, we definitely will not have to eat worms.
  • This article discuss a Texas firefighter who discovered that his plant-based diet has been shown to improve symptoms in a number of diseases, including MS. I did feel very good during the week of my nutritionist-led Spring Cleanse where I ate only veggies (raw and steamed), potatoes, no dairy, no meat, no sugar, legumes, and natural grains like Kasha, quinoa, and brown rice.. Check out Jennifer Howe's website to learn more about signing up for the next Cleanse.
  • I found a few different articles about using Yoga to help with MS symptoms. This one is from the Yoga Journal.
  • And, finally, here's a video produced by the National MS Society that is one of many videos featuring a doctor at a prominent MS center. In this one he talks about research into treatment for advanced MS. The second article at references a research study showing that a small group of people with MS showed improvements with fatigue and other symptoms when they practices yoga regularly.

Whining my way to a grateful heart...

Instead of sharing how I worked my way through my process to get to a place of humor, perspective, and gratitude, I thought I would share the mucky part before that and see if it makes me feel any better.

I am at the MS Center getting my monthly solumedrol drip, except I had to wait a half hour after the start of my appointment since I missed my March appointment. I am being punished for my non-compliance even though I am here which means I am trying to be compliant. Too late. I'm in the slot and there I will stay.

My feet are still numb and cold and even though I left a message for the neurologist yesterday, I have yet to receive a call back. And even though I am actually present in her office, she has yet to come by to see me and respond to my message about the numb feet. More punishment? I'll show her. She misses the solumedrol and her feet get numb, let her suffer because she deserves it. She brought it on herself.

I am alone. Lots of people are here alone but there are also people who have loved ones with them. It's probably 75% alone and 25% with people. So why I comparing myself to the minority and feeling bad?

The woman who is getting an infusion in the next pot just went to the bathroom. Her husband lifted her from the recliner into her wheelchair and then took her into the bathroom. I'm assuming he had to pull down her pants, put her on the toilet and either empty her cath bag (is there such a thing) or wipe her after she went to the bathroom. Who, exactly, would do that for me? Not that I want to be in a position to be having ANYONE take me to the bathroom but, God forbid, who will take me?

I am feeling like I have no loved ones that love me THAT MUCH. I am filled with self-pity and devoid of all gratitude. I am missing my dad and started crying when the nurse asked me why I missed the March appointment. I am missing that he was a person related to me who gave a shit and who I could count on no matter what. He would never let me be homeless. But I am not homeless. I have a job and a home and a refrigerator full of food.

I am missing Ken, too, not just as my boyfriend but HIM in particular. I am missing his eyes and his voice and his kindness and his hands and his love and his body. I'm not sure why I am missing him here and now. He never came to solmedrol drip appointments with me at this place. He probably would have tried to come if I asked but he never, ever would have offered on his own. Maybe I'm missing who I wish he could have been for me. In our relationship, he gave me a lot but he could not or didn't want to give me his whole self and his whole heart as a life partner. I am missing what he NEVER could give me. But then again, I hate when people feel sorry for me and cling to my independence at all costs so why am I craving that kind of support?

I am tired and want to fall asleep but I'm supposed to be working which I'm not doing anyway, so I should probably stop whining and either do some work or shut my eyes. I keep switching screens from this one to work email and feeling resentful about that.

I am, in short, not in a good place. I am sad, mad, scared, and, generally pathetic. I know that this too will pass. I know that because I am sharing my feelings, they will be halved I will get relief from the poison in my brain.

A woman just came in with a three-month old baby and I feel better looking at his peaceful face asleep in the stroller. Thanks God.

I am not asking for help and I should be. I just closed my eyes and asked but I was not hit by a bold of spiritual lightning.

Saturday, April 11, 2009

Numb Feet

My feet are asleep and, no matter what I do, they refuse to wake up. I'm guessing this is the MS which kind of pisses me off.
I inadvertently blew off my solumedrol drip for March (I was a bit busy with death and heartbreak). So, when I called the neurologist to report the numb feet a couple days ago, I rescheduled the solumedrol and kinda forget to mention the new symptom. I'm going in on Tuesday so I figured I would mention it then.
I feel like I'm going to get in trouble again for being a non-compliant patient. Maybe they'll decide that I'm too rebellious to have MS. Wouldn't that be something? If you only got the disease you were prepared to have. Hmmm. But then, I guess, no one would get the really bad ones.
Cancer would suck a lot and no matter how compliant you were, you could still die of it. AIDS: Also pretty sucky. People are living longer and longer with HIV these days but it seems that most people who are HIV positive have to be sticklers with the medication and usually end up dying of pneumonia in the end anyway. Diabetes wouldn't be that fun either. You have to watch what you eat really closely, give yourself shots, and, if you are non-compliant, you could end up going blind and/or having to have something amputated.
On second thought, maybe MS isn't so bad.
The numb feet has added a new fear to my list. I worry that I will step out of bed in the morning and my entire legs will be numb. I will fall to the floor and have to crawl to the phone. Not sure who I would call either. I mean, is that worthy of a 911 call? Do I call Mr. Ex to pick up the kids? Do I call my fabulous neighbors to take them when he says he says "that doesn't work for him?" Do I get back in bed and have my husband bring me bon-bons? Oh right! I don't have a husband....and I'm not even sure what a bon-bon is or if I like them.

Monday, April 06, 2009

Boston MS Walk 2009

The day dawned a bit gray and chilly for yesterday's Boston MS Walk. As we walked, the sun shined higher and warmer in the sky, burning off all the clouds and making it a beautiful, New England Spring day. Team Lazy participants for the day included Lazy Liz, Lazy Pete, Lazy Katie, Lazy Zack, Lazy Ruby, Lazy Ashley, Lazy Lynda, Lazy Deb, Lazy Christina, Lazy Nancy, Lazy Ellen, Lazy Cindy, Lazy Jill, and little old Lazy Me!

I never heard the officials numbers but, based on my unofficial observations, there were a PLETHORA of walkers on the trek from Harvard Athletic Complex to our 6-mile route around the Charles River. I am incredibly pleased to report that, with your help, I was the team's leading fundraiser with $1010--not bad in this crappy economy. Team Lazy as a group, was one of the event's leading fundraising teams, bringing in $4000+ (last minute plledge are still coming in.

I am grateful for your support and incredibly hopeful that the money will help free the world of MS.

Wednesday, April 01, 2009


I am the proud captain of Team Lazy, a group of 10 wonderful women participating in the Boston MS Walk on Sunday, April 5. The walk is only 4 days away and I am mortified that I am not the team's top fundraiser. I am very competitive and I am the captain after all. I'm not quite sure how I will maneuver the 6-mile walk with my head hanging low in embarrassment and my feet shuffling in shame. Please help me regain my typical proud posture and raise money for an incredibly worthy cause--finding a cure for MS, so no one else needs to be pulled into a private room to hear those life-changing words: "You have Multiple Sclerosis."

Click here to make a donation of any size. Any and all contributions are welcome and incredibly appreciated.