Whining Questions to Dump Before Bed

Why do all the other MS bloggers have awards except for me?

Why, if the neuro and the radiologist have confirmed that I have new but not active lesions, do I have to continue taking the Rebif and why the hell did I throw out my 10 or so remaining doses? On a related note, which body part should I stab tonight? Or rather, which section of my ample ass should I use for the injection this evening?

How and when am I going to shift my focus and energy back to my book proposal and finish compiling the first chapter? Should I finish my 4th step (as in the fourth of the 12 steps) first or is that just a delaying tactic?

What the hell am I going to wear on Saturday night to my first grown-up party in a while and should I have said "no" to the second brownie if I really want to look my best?

Why does my ex even think about taking a job that can't guarantee him every other weekend with the children?

Who am I most like: Carrie or Miranda and when the hell will I find MY sex in the city?

If and when the Universe decides I'm ready for another relationship, at what point do I tell the guy about the MS?

World MS Day

Enjoy it while it lasts, MS. If I have anything to say about it, this will be your final commemorative holiday and next year we'll be celebrating your extinction.

Welcome Newcomers

For my new visitors and followers, I'm thinking it must be really confusing to just JUMP into my journey with MS. I mean, this woman has MS but she's going on about dead dads, politics, whining about lesions....?WTF? Where is the context? Where is the humor? What's it all about and, in the words of Admiral Stockdale , "Why am I here?" (Remember him? Ross Perot's running mate? I absolutely loved the late, great Phil Hartman's impersonation of him running alongside the car with Ross Perot driving. Or was it the other way around...?)

But, I digress.

If you are newly diagnosed with Multiple Sclerosis or know someone who is, welcome! This is the best club you never, ever wanted to join. I wish you peace and strength as you navigate the world of this chronic, live-changing illness.

And, once you settle in and get comfortable, I'd also like to invite you to be open to the blessings of MS. To paraphrase Michael J. Fox from Always Looking Up: The Adventures of an Incurable Optimist: For everything that MS has taken from me, it has given me an even greater gift. Swear to God. If you are sick, scared, in pain, or all of the above, you are probably questioning my sanity and/or sobriety. You wouldn't be the first. I kid you not, though, that I thank theUniverse for giving me Multiple Sclerosis. That doesn't stop me from whining about it sometimes nor is it intended to discourage whining on your part. Whining is part of my journey, too, and it helps me get to the place of recognizing the up-side.

Don't get me wrong. I want to find a cure for MS. I want better treatment that does not involve horrendous side effects, self-injecting medication, and regular infusions. I want to support scientists who are using stem cells and other technology to reverse nerve damage and give people back full use of their bodies, minds, and spirits. I want our children and children's children to not get pulled into a private room and hear those frightening words, "You have MS."

But I do have MS and that cure is not here yet. Lemons are all around me and I can either pucker up or get some sugar and make me some lemonade. I've chosen the latter and that's what this blog is all about...most of the time, anyway.

Since I was diagnosed, a lot has changed in my life and it's not all bad. Although my vision has diminished to the point that I no longer drive, I now reach out for help and rides and rarely go to meetings alone anymore, which has improved my social life and decreased isolation considerably. I'm also taking public transportationever where which is much better for my pocketbook and the environment. I never figured out a way to read and drive at the same time but I'm getting lots of reading done on the T.

I have less energy than I used to, which means that I have to choose carefully before deciding to do something. I make a point not to waste energy on silly/unimportant things (most of the time). I prioritize in a way that I have never been able to do and I spend my energy on the things that are truly important and meaningful to me. I take better care of myself and don't burn the candle at both ends like I used to do. I now view rest and relaxation as completely valid and worthwhile activities.

Stress does terrible things to people with MS. Since stress does terrible but more invisible things to everyone else, I'm benefiting all over the place by doing conscious acts to reduce stress in my life (yoga, meditation, work/life balance, etc.). If I didn't have the visible MS stuff to remind me (fatigue, numbness, more vision issues, pain, etc.), I would probably have just as many excuses as everyone else about why I can't reduce stress in my life. Now, though, if I decide I'm immune to stress, it knocks me on my arse and reminds me who's boss.

Heat is not good for MS. Most people with this wonderful disease, including me, notice an increase in symptoms in the hot weather. I used to love to lay out on the beach for hours at a time. In recent years, I've worn sunscreen, but still, some of thoseUVA/UVB rays have, no doubt, gotten through. Now, I limit the amount of time I spend in the sun and often choose shady spots to hang out in order to reduce symptoms. Who knows--I may even be staving off skin cancer at the same time.

When you have a disease like MS that can affect literally any part of you that's connected to the central nervous system (in other words, ALL OF YOU), it's hard to know what's MS and what's just normal aging or clumsiness or whatever. Although I am the first to point out thesuckiness of that fact, I'm also aware that I am way more attuned to my body and mind than I ever was before.

Before MS, I always wanted to write beyond the copy I crafted for my job. I was a writer who wasn't writing. Now I write. MS has been my catalyst, my inspiration, my muse, if you will. Even after they find a cure and people view MS like we now see polio, I will be grateful that I had it. I will be grateful to MS for giving me these gifts. I'm not sure, but I don't think I could have received them any other way.

If you are new here, I hope you will come back. There are some helpful facts about MS in the right margin and sprinkled throughout my posts. You can also visit the National MS Society site. for information and resources about Multiple Sclerosis. This blog is filled with my opinions, my voice, my feelings. You are more than welcome to share yours here via the comments feature or even start your own blog if you have a lot to say. Or maybe you want to write a poem or paint a masterpiece, or do a photo essay. Whatever you do, find your voice and when MS tries to shut it up, tell it to screw.

Ow.

I was feeling great. I really was! And now both of my wrists hurt. Did I sleep wrong? Is it MS? Am I just old and tired? Is it psychosomatic since I know there are new and active lesions? Did I jinx myself by talking about feeling so good? Does it matter?

I'm in great spirits, though, and I'm looking forward to dinner out with friends tonight and going to a meeting and writing with my sponsor tomorrow.

Screw you, MS!

The lesions are active! The lesions are active!

The title of this post is meant to be read with the same enthusiasm as "The British are coming! The British are coming!" but, obviously, I don't have the ability to reach through the computer screen and force you to do that....or do I....? (mmmmwwwaaaaahhhhhahahahahaaaa!)

I had a big day at the Partners MS Center yesterday morning. First, an appointment with my neurologist, Dr. Lopez-Diego. Unlike all too many doctors, she is always on time, always dit, and always shakes my hand hello and goodbye. I like these qualities in a physician. She acts like she is an expert that I've hired to take care of something outside my skill set...which she kind of is. We are partners in treating my MS. Also, she's a woman and probably a little younger than I am. Dr. L-P definitely perpetuates the stereotypes that female doctors are more empathetic and humble and younger doctor's are more progressive and open minded.

Although I was anxious to see the MRI results, I first had the overall neurological clinical workup. I did the walking down the hall on my heels and my toes thing, the flipping my hand over and back, and all the other tests of my reflexes, strength and vision. These vision tests frustrate the hell out of me since I can't read any of the letters on the card with my nerve-damaged right eye, but I still have to cover my left eye and try anyway. Next time, I think I'm going to memorize the card and pretend I can read it or maybe I will read something that isn't there. I could say: "Why it's a miracle! I can read it! It says I A M B L I N D I N T H A T E Y E!"

After the neurological games, we sat down to look at the MRI results on Dr. L-P's computer screen. Although the neurologist and radiologist are not in complete agreement about the particulars, there are definitely more lesions on my spine and in my brain and the contrast shows activity (whatever that means) in at least one of the lesions.

The radiology team and the neurology team are going to have a pow-wow this week to compare the old MRIs and the new MRIs side by side so they can agree on a final report. I guess there's no such thing as a dissenting opinion when it comes to MRIs.

So, what do these results really mean? Dr. L-D believes that the thrice weekly Rebif injections and monthly solumedtrol infusions are not working as well as she had hoped. I get the impression this is supposed to be bad news but I'm not feeling bad about it. Perhaps it's denial. Perhaps it's just my fabulous, optimistic attitude. Either way, I'm focusing on the positive:

1. Once Dr. L-P changes my treatment, I will no longer have to give myself an injection of Rebif 3 times a week. Can I get a Whoot-Whoot?!
2. I will no longer have to go into the MS Center once a month for infusions of solumedtrol.
   
3. I will not have to get blood tests every couple of months to make sure the Rebif isn't damaging my liver

So, what's next? As soon as the MRI results are finalized, I'm going to stop taking the Rebif and start one of two possible low-dose chemo drugs: Rituxan or Cytoxan. I asked Dr. L-P about Tysabri but she doesn't feel comfortable with the 8 US cases of PML--a very rare, but deadly brain infection. I am leaning toward the Rituxan since you only have to get 1-2 infusions a year and hair loss isn't one of the possible side effects. I may have MS but I am still vain enough to want my hair.

The funny part about all of this is that I feel great. My vision sucks but I don't have fatigue, leg pain, headaches, or any numbness. Physically, I have absolutely no complaints. Seriously, until I open my eyes and have trouble seeing things in the morning, I can easily forget I have MS. Although this could just be the calm before the storm, I'm going to enjoy it while it lasts.

Shrinkage, Vision, and Drugs

On Wednesday, the neurologist will give me the results of my latest MRI series. Unlike men who step out of a swimming pool, I am hoping for shrinkage.



Since I have no penis and this blog is addressing MS issues, I probably don't need to specify that I'm hoping for shrinkage of the MS lesions in my brain and on my spine. I'm a stickler for accuracy, though, which is why I'm mentioning it anyway. I think, even a status quo lesion status wouldn't be terrible since it will show no progression of the disease. More or larger lesions are definitely not what I'm looking for.

I'm also going to talk to my neurologist about another neuro-opthalmology evaluation. I have suspected for some time now that my vision is getting worse, although the regular opthalmology exams show no further detioration. I think it's a constrast issue plus my vision is worse when I'm in motion and/or tired. This article seems to concur with my instincts.

I suspect we will also discuss my ongoing treatment and MS drugs. I don't trust the objectivity of studies that are funded and conducted by the drug companies that makes the drug being studied but I'm reading a lot of positive stuff about Tysabri lately and some of my fellow MS bloggers/online buddies are singing its praises in their own lives. Here's one.

It's been my understanding that Tysabri has potentially dangerous side affects (namely possible death) so it's sort of a last resort thing if other, safer drugs aren't working. Not so, according to this article.

Still, I'm a firm believer in, if it works, don't fix it. So if there is shrinkage or the size and number of my lesions is status quo, I will probably stick with the Rebif. I have no real side affects (besides bruising and pain at injection site which you kind of expect when sticking yourself with a needle three times per week).

According to this drug company study (again, possible objectivity issues should be considered), Rebif reduced the number of active lesions by 78% compared to the same group of MS patients getting a placebo. (That would suck, wouldn't it? You have to give yourself a shot three times a week and it is basically water that does jack shit to slow the progression of your MS?)

Denial is Fading

I have an appointment with my neurologist next week to discuss the results of my latest MRI series. I realized today that I am NOT secretly expecting she's going to tell me there was a really big mistake and I don't have MS.  

That's a first. Usually, with each appointment I am absolutely positive that I will leave there, head reeling, but MS-free, feeling kind of sheepish and stupid that I made a big deal out of nothing.

Nope. I still have MS. Feeling pretty good, though. I have sensation in all my extremities, have pretty good energy level (no mandatory napping when I suddenly start nodding over my computer), no MS hugs, or leg pain.

I am, however, very sad, but trying to keep all that non-MS emotional crapolla on my other blog. 

DJ Lazy in the MRI Tube

I spent two hours in the MRI tube tonight. 

That's not counting the hour it took to travel to Brigham and Women's Hospital, the 45 minutes my appointment was delayed, the 15 minutes it took me to fill out the forms and put on my johnnie, and the hour and a half it took to get back home. 

That's right. My bi-annual MRI (although I blew off the series I was supposed to have last summer so technically it's my only one this year), took 5 1/2 hours or, in babysitter talk, 55 smackaroos. The kids and I love our babysitter, Ash, but I would have rather had a spa day with a friend or gone to a concert with this me time.

But, it was not a total waste of time.  I have a new idea for a musical project. I am going to become a DJ.  I'm thinking my stage name will be DJ Lazy but I'm also considering Lazy I.M. 

Seriously, though,I want to work with a musical producer or sound engineer or one of the other very talented audio people I know to remix the really, really loud sounds that are blasted into one's ears during an MRI. I want to take those horrible but incredibly rhythmic sounds and create music.  I got the idea when I was trying to not move my eyeballs during the brain scan and trying not to swallow during the thoracic and cervical spine scans (with and without contrast). I tried to imagine dancing to each sound like it was a percussion instrument.

For those of you who have not had the pleasure of hanging out in an MRI tube, here's a little sample of what you're missing. 

Imagine a mix of the machine gun rat-a-tat-tat sound with the electronic water drip torture sounds with maybe the clunk, clunk transition sounds in between.  I'm telling you, I am really onto something. People will hear the MRI mix in clubs and beg their primary care doctors for an MRI referral. It will spawn expressions like "That's magnetic resonance, man!" and "I had an awesome weekend. I was in the tube!"

I found this video that was created for children to prepare them for MRIs. I have decided that my next MRI will be at a pediatric MRI center. I want movies!

Staying on Top of My MS Game

What's the difference between MS nerve damage and MS symptoms? I think it a question of permanence. Symptoms are temporary and nerve damage is...well, permanent...at least until they figure out how to reverse it. The visual impairment (aka, optic nerve damage) appears to be ongoing (aka, permanent). The numb feet symptom...ALL GONE! Can I get a WHOO-WHOO?!

WHOO-WHOO!

I think that this mini episode taught me that I have to stay on top of my MS game. You know...keep up with the self care and reduce the stress. I can't NOT have my boyfriend break up with me or NOT have my dad die (well, I guess that won't happen again, will it?), but I CAN keep up with the things that make me feel better: good sleep hygiene, Rebif three times per week, monthly steroid infusions, yoga, walking, meditating, etc.

I'm getting a full MRI series (brain, cervical spine, and thoracic spine with and without contrast) on Wednesday. I'm prepared for the boredom, claustrophobia, and inability to fall asleep this time (my eyeballs move when I sleep which makes it hard to get a good look at my optic nerves), so I'm bringing my iPod with a bunch of public radio podcasts. I know I'm such a geek, but it will keep my awake and oblivious of the fact that I'm stuffed in a tube for 3 hours.

I have an appointment to discuss the MRI results with the neurologist next week. The MRI is supposed to tell her and me how the MS is progressing. From what I gather, if there are many more lesions or if the lesions that were there are bigger or more active or whatever, she may consider changing my course of treatment. If, however (and this is the option I'm rooting for) the disease has not progressed significantly, then I will stay on the Rebif and monthly steroid infusions and hope for the best until some of these studies pan out and all the very talented scientists on the case find a cure, reverse the damage, or come up with effective oral meds.

This UK Telegraph article reports on a limited study that showed how adult stem cells reversed symptoms but not nerve damage.

This MedPageToday article has really great things to report about the efficacy of oral MS meds. And another, in Health News, singing the praises of a combination of two oral drugs.

This PeerView Media Bar story suggests adding a steroid injectable interferon beta drugs, slows down the progression. Based on my lay person's sensibilities, it seems like this goes along with the neurologists ideas of giving me Rebif AND the infusions of solumedrol (another steroid).

This EMax Health article summarizes research that was presented at the American Academy of Neurology about finding a thingamajig called glutamate that gives info about the progression of the disease and, therefore, may be a key to better treatment.

This Medical News Today piece describes the discovery of a protein that apparently eats both myelin and gray matter. I'm quite sure I am not getting that right since I'd rather not think about anything devouring my gray matter, but read it yourself. Perhaps you have enough gray matter left to understand it better than I did.

In the meantime, though, I'm going for the gold.

Why?

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?

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!

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 About.com 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.

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.

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.

THE SHAME! THE SHAME!

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.

Remembering Those Who Are Gone

I keep hearing songs that remind me of my dad. "Bad, Bad Leroy Brown" by Jim Croce was the first. I smiled when I heard it, remembering Dad in our house in California, dancing around the living room with a drink in one hand and a cigarette in the other. In those days, he had a curly Afro and a mustache kind of like Jim Croce.



I keep passing his name in my email and cell phone address/phone books and remembering that he is gone. I miss him but I know, without a shadow of a doubt, that he is in a better place. I watched him in the days and hours leading up to his death and it wasn't pretty. I know how much pain he was in. I know how much effort it took to breathe in and out at the end. I know he left this earth because his body gave out and he wouldn't want to be here anymore like he was at the end.

In some ways, the harder loss in my daily life is the breakup with Ken. We broke up a couple of weeks before my dad died because he didn't want to make a commitment. I got to a place, after 3 1/2 years, where I was ready to move forward. He decided that he was not in the same place and wasn't sure he would ever get there. I would like to be angry, but I'm mostly just sad.

Unlike the passing of my father, this loss was and still is complicated and I'm not totally at peace with it. This was Ken's choice. The rejection added to the loss is like salt poured onto a very deep cut. It would be nice to say I'm handling it with grace and dignity, but that wouldn't be completely true. I haven't drank, smoked, or taken a recreational drug, but I found some other fun ways to act out for a the weeks since my dad died. I'm writing a couple essays under a pseudonym right now about some of that behavior.

I decided yesterday that I had to "unfriend" Ken and his family on Facebook because I was not ready to be his friend in real life. I don't know how to see his face and read his updates and not have unreasonable expectations. No matter how much I want it to be true, Ken's not going to see a post on his daughter's profile page and think, "Wow, Julie is so awesome. What have I done? I love her madly and I must do whatever possible to be with her forever and ever!"

I didn't put the break up stuff on here before (which is why I put it on my other blog)--I think because it would make it too real. I'm ready to this grieving process going so here you go.

I had a dream last night that began in Ken's house. I was knocking on his son's door to give him a hug goodbye. In the dream, Matt was taller and bigger than the last time I saw him, like he had been through puberty and I had missed it. I thought I would be a mother figure in his life when that happened but now I won't be. Then I knocked on his daughter's door to say goodbye to her. I think I got teary as I gave Ally a hug. As I started to leave the house, Ken approached me with a box filled with my things. There were all kinds of stuff in there that he doesn't even have in real life, like clothes, books, and Zane's baby toys. As he handed me the box, I saw he was wearing a ring. It was on his wedding band finger and it was a turquoise heart ring. He had obviously committed to someone other than me.

The dream went on with buses and trains and other people, including one hysterical scene where Christina was on a train with me complaining about how filthy it was. I got off a stop too soon and had to run to catch the train at the next stop because I was afraid she would get lost.

According to dream analysis by the amateur team of my friend Nancy and me, the dream was about missing Ken and his children and the possibility of becoming a family together. I think the box was about the fact that I gave him everything, my whole heart, and he gave it back and said he didn't want it...or me. And then, when he was able to commit, it was not to me. It was very, very sad. I think the whole train stuff was about moving on, or trying to, and that was very sad. And I was moving on...or trying to and having trouble but I had friends there to help me.

So, suffice it to say that I am kind of in a shit storm these days but I have to believe that it means there is gorgeous weather on the other side. My friend Theresa shared a wonderful story with me:

One day the only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him. Every day he scanned the horizon for help, but none seemed forthcoming.

Exhausted, he eventually managed to build a little hut out of driftwood to protect him from the elements, and to store his possessions. One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger. He cried out,

"God! How could you do this to me?"

Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him! "How did you know I was here?" asked the weary man of his rescuers. We saw your smoke signal," they replied.

I am in the hut and it's burning but the rescue ship is on its way. I hope they have snacks.

MS and I are Alive and Well

I haven't written anything in a while about Multiple Sclerosis--humorous or otherwise. Here's a mini wrap up of how the disease is doing--in me and the world.

• MS is running scared now. President Obama reversed the insane ban on embryonic stem cell research and the war on science is over. Listen to this NPR Story for more info. Maybe I won't have to travel as far for a stem cell vacation. It seems that even people way closer to the center than I am who use words like "unborn" to describe fetal tissue, understand that millions of living, breathing human beings will benefit from this important research. Check it out.
  
• Montel Williams appeared on the Oprah Winfrey Show to talk about living with MS. While I thought it was very important to bring MS to such a public forum, I objected to the description of MS as a "life-threatening" neurological disease. I felt incredibly grateful when I heard about Montel's constant pain. I would NEVER trade my visual impairment for pain. Check it out for yourself.
• The BBC has been covering a story about a woman with Multiple Sclerosis. Apparently, she brought a case in the British courts that would enable her and her husband to travel to Switzerland to commit suicide. I'll let you hear it straight from the woman's mouth. Here's a link to the video. I do not live in this woman's body nor do I have the knowledge to comment medically on her case but, I resent MS being moved into the category of diseases that are so horrible that people would rather die than live with them. These kinds of stories are why, when I tell people I have MS, they say stupid stuff like "Oh no. What are you going to do? What about your kids?" or tell me about their aunt her "died" of MS 20 years ago.
• I've heard a lot of talk about MS meds that will not require an injection. When searching for updated news today, I found this story about buckeyball technology used to create new meds. Interesting although I strongly object to the characterization of MS as a disease that slowly paralyzes and then kills. I also found a company in Berkeley, California that has filed for a patent for oral MS meds. So...what's next? What comes between patent and production/sale? Big Pharma may not be angelic but they are the ones with the money to make a difference. Merck is funding new research, too. Hope their merger doesn't slow it down.
• There are also research going on to reverse nerve damage caused by MS. A drug used to fight Leukemia is showing promising results.
  
• March is Multiple Sclerosis Awareness Month. There are many different activities going on, including education, events, and activities. If you are looking for a way to raise awareness and money, I would be happy to provide you with an opportunity to do so. I have formed a team -- Team Lazy -- to participate in the Boston MS Walk on April 5. Join the team or make a donation.

Happy 1st day of Spring!

Rest in Peace, Dad

My father died at 3:45pm on Friday, March 6.

I'm so grateful that I said everything I needed to say to him when he was alive and conscious during the years before his death. I repeated all the stuff I thought was really important when he was no longer conscious and dying at the Sarasota Hospice House.

It was a horrible death. He suffered for each breath during his final week. He was less than 100 lbs. and not able to do anything, even open his eyes at the end. It was painful and even the high doses of morphine couldn't totally relieve his pain until he finally took his last breath and slipped out of his body.

But he is no longer in the ravaged body of a man with emphysema. I want to imagine him breathing big deep breaths and smiling in heaven with Goober, Luke I, and all his other dog friends that died over the years. He is sailing and hunting and fishing and being outside. He is telling stories and smiling at those he loves. He has a head full of curly black hair again and he is showing off with push-ups with a clap in the middle like he used to do in the driveway when I was a little kid. He has started a Craigslist in heaven so he can keep making deals and getting bargains. He is at peace.

I think I am, too...with his passing, that is. I miss him but I know that he is in a better place. That does not mean, however, that I am not a little nuts right now.

I am bruised and wounded by my family's craziness while he was dying. I'm horrified by my ability to pull the dead dad card whenever I want to say or do something inappropriate. I am sad that, for all intents and purposes, I am now an orphan. I am guilty and a little mad that everyone won't agree because my mother is still breathing. I am determined to work through all these feelings and try not to get sick. I want to be kind and gentle with myself and not abuse my body, mind, and spirit with old patterns and escapes. I want to be with my feelings without being filled with self pity.

I'll let you know how it goes.

My Dad is Dying

I'm in Florida...again, sitting by my dad's bedside in a hospice house, waiting for him to die.

On February 14, I arrived to visit my dad and have fun in the sun with the kids during their February vacation. It was a good visit. I was surprised by how skinny Dad was and how much his wife drank, but it was a good visit. We talked a lot and "Grampy Baker" chauffered the kids and me to the beach every day. When I returned to Boston on 2/20, my dad had a cold but was still very much awake and alive. We discussed Obama's stimulus package and the sour grape Republicans who semed to be obstructing change just because they didn't win in November.

A couple days later, I got a call from my sister saying that my dad's cold got worse and he had been hospitalized with double pneumonia. Apparently, he was conscious then and reluctantly told his primary care doctor that he would be willing to be intubated if need be. And, of course, that's the way it went. The oxygen mask wasn't doing it, he kept trying to rip it off and, when Linda went to the bathroom, she came back and he had been intubated.

I was shocked to learn that, although he had been diagnosed with emphysema/COPD several years earlier, he did not have an advanced directive, a living will, or had not even dicussed his wishes with Linda, his wife.

Much to everyone's surprise, the ICU was able to excubate Dad and put him back on just the oxygen tubes in his nose. But he never fully regained consciousness. They don't know if he had brain damage as the result of lack of oxygen to the brain or if he suffered a stroke. Either way, his eyes were open on and off and he was moaning but he was no longer able to focus on anyone, communicate, or even respond.

We switched him to hospice status on Wednesday but we chose to do it at the still in the hospital. Discovered today that the nurses weren't automatically giving his morphine. He's being moved to a Hospice House outside the hospital now. May he rest in peace soon. I told him he didn't start out that way but he is a very good dad and I love him very much. I've told him everything. Now we wait...