Friday, November 30, 2007

MS Ads

A Swiss advertising agency developed an interesting and creative campaign to describe MS:

The Balancing Act Continues

I talked to my counselor this morning about how I realized that I couldn't do absolutely anything I wanted to do physically anymore because I have a progressive disease.

Let's back up a bit. My counselor is very involved in the MS community. She was referred to me by my insurance company almost a year before MS diagnosis. Random? I don't think so. One of her fellow therapists in the practice has a husband with MS and she has a cousin or sister or some other close female relative with MS. She goes to Women Against MS (WAM) events and she participates with an MS Walk team to raise a ton of money for the MS Society each year. I'm going to join the team this April. Anyway, she knows a lot about MS, it's progression, common symptoms, the unpredictability of the disease, etc.

So, when I talk to her about information I've read about MS, chances are she's read it, too. So, I expected sympathy. I thought I'd tell her the whole progression realization and she'd say something like: "Yes, Julie. It's very sad that you have a progressive disease and won't be able to climb mountains when you're an old lady. Here's a tissue."

Nope. She explained that "progressive" is relative and that it can be used to describe slightly worsening symptoms, nerve damage where there has already been lesions, etc. Just because I MAY not be breaking any world records to get to the top of Everest when I'm in my 80s, doesn't mean I will be playing bingo in a scooter. She agreed with me that I should be informed about the disease but it's more productive to focus on the solutions/coping mechanisms than on the worst-possible scenerio. Anxiety is only going to make me sick. Literally.

After I did the AIDS Ride, I felt invincible. For the first time in my life, I thought, "I am strong. Physically, I can do anything!" I used to think there were people who could do athletic events and then there were those who could not. I believed that I was born into the latter group and there I would stay until I died, probably fat with black lungs. Not so! I realized that if I set a goal, identified the steps I needed to take to reach that goal, and accomplished those steps, I could do ANYTHING. I truly believed that. Alhough I didn't run, I thought I could probably even complete a marathon if I was willing to run a lot and put in the training. I don't really enjoy running so that never happened (and probably never would have even without the MS). I did do the Avon Breast Cancer Three-Day a few years ago which was 60 miles of walking in the rain, sleet, and snow. (Hoooo-ah!)

Anyway, so when I digested the whole progressive thing the other day, I thought it meant that the way I've viewed myself for the last 10 years is no longer true and maybe never was. Kind of a pretty big pile of crap on the doorstep of my psyche. Maybe, just most things, it's not black and white. I can set reasonable goals--3-day MS Challenge Walk, maybe? (Not Everest, but I never really wanted to climb Everest anyway.) I could set the goal, train for it slowly and sensibly, take good care of myself, not get too tired, and try not to go a million miles per hour--mentally or physically.

Anyone could end up blind or in a scooter. It is not necessarily my future any more than it's Ken's or my sister's or my next door neighbor's. I need to accept my limitations but not expect the worst.

MS is just a big, huge balancing act. Rock on.

Touching Story from Reiki/Doulah/Artist/Friend Laura

A nurse took the tired, anxious serviceman to the bedside. "Your son is here," she said to the old man. She had to repeat the words several times before the patient's eyes opened. Heavily sedated because of the pain of his heart attack, he dimly saw the young uniformed Marine standing outside the oxygen tent. He reached out his hand. The Marine wrapped his toughened fingers around the old man's limp ones, squeezing a message of love and encouragement. The nurse brought a chair so that the Marine could sit beside the bed.

All through the night the young Marine sat there in the poorly lighted ward, holding the old man's hand and offering him words of love and strength. Occasionally, the nurse suggested that the Marine move away and rest awhile. He refused. Whenever the nurse came into the ward, the Marine was oblivious of her and of the night noises of the hospital - the clanking of the oxygen tank, the laughter of the night staff members exchanging greetings, the cries and moans of the other patients.

Now and then she heard him say a few gentle words. The dying man said nothing, only held tightly to his son all through the night. Along towards dawn, the old man died. The Marine released the now lifeless hand he had been holding and went to tell the nurse. While she did what she had to do, he waited.

Finally, she returned. She started to offer words of sympathy, but the Marine interrupted her."Who was that man?" he asked.

The nurse was startled, "He was your father," she answered.

"No, he wasn't," the Marine replied. "I never saw him before in my life."

"Then why didn't you say something when I took you to him?"

"I knew right away there had been a mistake, but I also knew he needed his son, and his son just wasn't here. When I realized that he was too sick to tell whether or not I was his son, knowing how much he needed me, I stayed."

The next time someone needs you ... just be there. Stay.


Hmmm...deep thoughts by Lazy Julie. Well, deep thoughts by "anonymous," retold by Lazy Julie.

Late Night TV Thoughts

Headache gone. Yay! Hands are tingling,"banding" in armpits, and wobbly neck, though. I'm not tired but my body is and I need to go to bed. I'm watching some documentary about hypersexual behavior on Discovery Health. I am very grateful that I am not a sex addict. I am also grateful that Sandra (my car barter friend) is coming to clean my house tomorrow. One has absolutely nothing to do with the other, of course, but this is the way my mind works at 12:51 a.m.

Libby came over tonight and brought me beef stew. I got teary while we talked which was actually kind of nice. It tells me that she is a good fit for pastoral counseling. I usually put on a brave face. I did some of that, of course, telling my bad jokes about finding out if I could take a "welcome to blindness" class at Perkins School for the Blind, but I also talked about some of the darker thoughts and feelings.

Nighty night. Don't let the bed bugs bite.

Thursday, November 29, 2007

Headache Still Throbbing

It's day two and I still have a horrific headache. This sucks. I have taken every over-the-counter headache remedy known to man or woman every 4-6 hours, I ate healthy today, I worked from home so I could lay down and rest, and nothing has helped. I'm going to go meditate with a tape my friend Nancy gave me. I'm going to imagine it working. And, if it doesn't, I'm going to cry.

Libby, the ministerial intern from the UU church, is coming over to talk and bring me dinner. I used to bring people dinner who were sick when I went to the UU church in JP. I don't feel totally deserving of this kind of help. I don't have cancer. We made this date a couple weeks ago (just so you don't think I got a headache and called the church for help!). I want to feel better by the time she comes over. It hurts too much to smile right now and I really feel as if you should smile at a person who brings you food.

Splitting Headache

My head has been pounding and throbbing for 24 hours. I never got headaches like this before MS. Or is it from the medicine? Ow. Ibuprofen, Exedrin, Tylenol, coffee, and sleep have had absolutely no effect. Can I remove my head, put it on a shelf, and take out a loaner until the pain is gone?

Wednesday, November 28, 2007


Ok. I just finished editing an article for work and I went onto one of my MS web sites to see if I got a message from a friend who I didn't know had MS who recently reconnected with me through the site. (Phew. That was a run-on sentence, huh?) Anyway, "Fernando" is back. You know, the "LDN is the answer to all life's problems" guy? He bugs me and, to keep from responding to him on the bulletin board, I'm going to bi%$# about him behind his back on my blog. Here goes.

I think I should suggest that "Fernando" (not his real name) contact the UN to suggest LDN as a resolution to conflicts in the Middle East? Maybe LDN can cure AIDS, too?! Maybe anyone too stupid or broke to take LDN deserves their MS complaints? Maybe Fernando should eat sh&%! Ok. I'm done now. And don't forget: I am a pacifist. Imaginary force feeding of feces isn't a violent act, is it?


I went to my first yoga class taught by my friend, Nancy, this morning. (Ruby already takes her children's yoga class.)

It was awesome! My body definitely felt weak and I had problems balancing but I think yoga is really going to help with both those things moving forward. I had to hold onto the wall doing tree pose and my legs were shaking when we were stretching them up in the air with the strap. I cried at the end of the class (I don't think anyone saw my tears since I had a little lavender pillow over my eyes at the time and so did everyone else.) I think the lavender face massage Nancy gave me (and everyone in the class) during shivacinay (sp?--when you are lying in corpse pose relaxing n the floor at the end) opened something up and freed those emotions. I'm not quite sure why I was crying. I think it was just another little visit to the grief stage on this crazy journey of acceptance.

I'm so busy writing about ME that I almost forgot the most exciting and scary part of the yoga experience today. An older woman and an even older man walked up the stairs to the studio as we were rolling out our mats before class. Nancy saw them and said they were probably looking for the insurance company downstairs. Nope. The woman opened the door, let the man come in and said, "Bye Dad! See you in an hour!" and left. Nancy introduced herself and asked him if he had been to yoga before. He said "yes" just not at this studio and then he filled out the registration form. Nancy later told us that he said he had absolutely no health problems. Not surprisingly for a man in his 80s, he had some trouble with certain positions. Nancy assisted him or made suggestions for accommodations. All of a sudden, about a third of the way through the class, he stood up and said, "I don't feel well." Turns out the man had high blood pressure, high cholesterol and hypertension and shouldn't have been doing some of the positions, particularly downward dog. A woman in the class who had some medical training took his pulse and made sure he was ok. He drank water, sat still for a while and was fine while the rest of us finished class. Nancy now plans to insist on emergency numbers for yoga participants since the man didn't have or know his daughter's number. I later found out he just lost his wife LAST WEEK. I know the daughter was grieving, too, but dropping him off without a conversation with the yoga teacher wasn't a choice I would have made. Who knows. I can't imagine Bob Baker doing Yoga. Heheh. I also found out that the classmate with the medical training who helped the man just lost HER father last week to a heart attack. Weird.

Ken came over last night and we had a long conversation into the wee hours about all kinds of things we needed to talk about. I dread those kinds of potentially emotional conversations but they ALWAYS make me feel better and more connected. During the MS portion of our conversation, I shared with him a realization I had yesterday. I posted an article about a project were researchers are collecting blood samples from people with MS in the hopes of finding a cure. I went to the web site and read about MS and the project. You should know that I probably own 25 books about MS and have been to every English-language Web Site with information about MS. So, I've read virtually all the basic info about what MS is, etc. Then, why was I shocked when I read that MS meds will slow the progression of MS but they will not halt the progression.

That means it's going to get worse. No matter what. I have a progressive, chronic illness. Not just a chronic, relapsing and remitting one. It's progressive. Hmmph. I told Ken and he said, "Ya. I read that on day one before your diagnosis was confirmed." That means I must have, too. But I DIDN'T read it. Or didn't understand. Or didn't want to understand. Denial is so fricken weird. How is it that people who care about me knew I was going to get worse, for sure, not probably, but I didn't know that. I thought that it was a possibility but that I should focus on the positive, etc, because it wasn't necessarily going to get worse. Hmmph. Well, that kind of blows, doesn't it?


Tuesday, November 27, 2007

Interesting MS Research Project

My librarian friend, Diane, sent me this article:

To learn more or get involved in the Accelerated Cure Project:
I think I may donate my MS blood to this project.

Monday, November 26, 2007

Sad news

I just visited one of my MS chat rooms and learned that a 28-year old man with MS who visited the site often killed himself. Apparently, he was depressed about his illness and a recent break-up. His sister found him.

Suicide is a very permanent solution to a temporary emotion. I am so grateful that my mind doesn't go there with MS (or anything) these days. My life is way, way too me, to my children, and to all the other people I love and who love me.

I didn't know this man who decided that his life was no longer worth living. I don't even know his name--just his screen name. Still, this is so very, very tragic. There's no do-over with suicide.

Warning: Rude Humor

Merry Christmas, Charlie Brown:

This one is even ruder...but funny:

And, now an old-fashioned, written dirty joke:

Three men died on Christmas Eve and were met by Saint Peter at the pearly gates.

"In honor of this holy season" Saint Peter said, "You must each possess something that symbolizes Christmas to get into heaven."

The first man fumbled through his pockets and pulled out a lighter. He flicked it on. "It represents a candle", he said. "You may pass through the pearly gates" Saint Peter said.

The second man reached into his pocket and pulled out a set of keys. He shook them and said, "They're bells." Saint Peter said "You may pass through the pearly gates."

The third man, Jack, started searching desperately through his pockets and finally pulled out a pair of women's panties. St. Peter looked at the man with a raised eyebrow and asked, "And just what do those symbolize?" The man replied, "These are Carol's."

And So The Christmas Season Begins......

Blind Shopping

Over the weekend, I was doing a little Christmas shopping in the giftware section of Marshalls. There are MANY breakable things in these aisles which is why I use time away from the kids to peruse the vases, cups, candles, etc. When I entered that area of the store, I noticed a woman, probably in her 60s, walking with a white cane with a red stripe on the end, indicating that she was legally blind. She wore glasses, though, and was holding merchandise up close to her face, so I assumed she had some eyesight. I remember thinking, "Boy. I'm glad I am not totally blind." Almost immediately after having that thought, I knocked over a teapot. I didn't see it. It must have been in my peripheral vision. I have no idea how it happened. I just know I felt my arm hit something, heard a crash, and then found myself standing over shards of glass. The blind woman walked up and said, "Blame me. I'm legally blind. I do stuff like that all the time." I said, "Ya, well, I'm blind in one eye." She said, "Seriously, blame me." I smiled and said, "Ya, cause you have a cane." She laughed and answered, "Ya, people expect it of me and don't get mad." We smiled and parted ways. When the store clerk came over with a broom, I apologized and she glared at me while sweeping up the chunks of china. Maybe I should have blamed the blind woman. I mean...the REALLY blind woman.

Sunday, November 25, 2007

The Amazing Race and Human Kindness

I'm watching The Amazing Race (which was delayed by fricken football) and checking email/MS Bulletin Boards before heading to bed. I found an incredible story I want to share:

I was on the phone with my friend last night she has Secondary Progressive MS. She read about a new Clinical Trial on using Rilutek (ALS Drug) by a Neuro in CO. She went to her Neuro here in Vegas and he said he would let her try it. She went to CVS Pharmacy and gave them her Medicare card the co-pay was $285.00 (her hubby was just laid off 5 weeks ago) She told the pharmacist to cancel it she did not have that much. The lady in line behind her said " I will pay" my friend said it's too much. The lady said we live in America no one should be without meds and paid for it. She then asked what her husband did for a living and my friend said he was laid off. The lady gave him a tel # for Limo company said her husband owned it and they were going to give him a job. Had to share. (Hugs) Mary Posted on 11/25/07, 02:11 pm

Sunday Night

One of my children who chooses to remain nameless wants me to write about what we are doing right now. We are sitting on the couch in our jammies (jam jams as my MS community friends from the UK call them) watching Dragon Tales on the PBS Kids Good Night Show. We ate a lovely and kid-friendly pasta dinner when the Ruby and Zane came home from a weekend with John and then baked sugar cookies. While we waited for them to cool, I gave the kids baths and then we got to work with the frosting and sprinkles. It's still early so I told them they could have a half hour of TV before we read and they go to bed.

I love Sunday nights when the kids come back from their dad's house. I get a "meekend" (my friend Nancy's phrase--you can also have a "mevening"), get some things done, go to lots of meetings, see Ken and friends, and then they come back just as I start to really miss them. So, every other Sunday night, all three of us are in this very good place--I'm psyched to have them home, they are happy to see me, we eat an early dinner, and have lots of time for snuggling, playing, reading, and whatever before bedtime.

It's hard to hang on to that feeling as the week progresses. I start feeling rushed to get work done for the next day, get lunches packed, clothes picked out, etc, etc, etc. I wonder how I can hang on to the every other Sunday night feeling?

Off to read to Ruby and Zane and put them to bed. More later.

We read Take a Mouse to the Movies, Ruby's Beauty Shop, and When I Get Bigger. Ruby reads one story to Zane now and it's so cute to see them laying in her bed, giggling together. Not so cute when it's an hour later and they are still giggling. I ended up putting Ruby in my bed after an hour of giggling, yelling, getting out of bed, etc.

Talked to my dad today. He asked about the MS and I started simultaneously looking forward to and worrying about Christmas. I know when I see my dad and my sister at Christmastime (the first time since diagnosis), they will be preparing themselves for me to look different. Everyone does. Or seems to, anyway. And, even though they search and search, they can't find anything visibly wrong with me so they assume I'm fine. "You look good!" they say, which under normal circumstances, is great to hear. Who doesn't want to look good? It's just that when people who haven't seen me since I was diagnosed say it, it's like they're saying, "You look good so you must be fine. Phew. No need to worry about you anymore. Thank goodness!" Then, when I bring up the Ms, or even worse, complain about it, it lands like a lead balloon. Splat. Thud. What??? "But you look fine!" their somewhat confused and annoyed expression seems to say. "What the heck are you talking about? Boy, way to milk the MS, Julie!" Or maybe that's just want the voice in my head is saying...?

I do look pretty good today (if I do say so myself, seconded by the dirty old man at my meeting this morning). I weigh more than I would like (which may beg the question of why I ate a triple serving of leftover Thanksgiving sweet potatoes for lunch), but worrying about that seems a bit silly these days. More importantly, I feel pretty good. Even on my worst day, I know how fortunate I am to have MS in 2007 in Boston instead of 10 years ago or living in someplace like Celebration, Florida where I had the pleasure of being treated (and mistreated) after an injury over the summer.

All of what I just wrote is very true and very real...and MS is scary and there are changes I'm still getting used to. I have limited vision that I pretty much accept but is still an adjustment (when someone walks into my lack of peripheral vision, for instance, I get startled when I turn my head and notice them); I have many new fears about the future (when I move into a single family home, should I make it a 1-story ranch, just in case?); various random aches, pains and weird body sensations that get worse if I'm tired, and then there's the whole limited energy thing--the finite number of "spoons" I get on a given day and trying (and failing) to continue my habit of going a trillion miles per hour until I crash.

At my meeting this morning, I heard a guy say (and he was kind of hot so I paid attention) that he believes everything happens in his life--good and bad--for a reason. I don't always know the reason (or if there even IS a reason all the time) but I know that I learn and grow from everything. And, in my case, the crappy stuff brings more growth than the good stuff. Maybe we're all built that way, I'm not sure. When I almost lost Zane, that was a horribly stressful time in my life but I got a lot closer to my higher power and I saw some truths in my relationship that I didn't want to see before. When my marriage ended, I learned that I was way more capable and responsible than I ever thought before and that I could (and am) caring for my children and myself on my own. When I hit bottom with my drinking and drugging more than two decades ago, I was given a whole new life that was so much better than I every imagined was possible. I know that I will thank the Universe for MS. I do already because of how it's inspired me to write this book. I do already because it is forcing me to care for myself. But I hate it, too. Ahhh. Acceptance is such a bi&%$ of a journey, huh? So many zigs, zags, deadends, and U-turns. Maybe there's a shortcut I just haven't found yet?

My personal trials have also taught me the value of unmerited suffering. As my sufferings mounted I soon realized that there were two ways that I could respond to my situation: either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course. Recognizing the necessity for suffering I have tried to make of it virtue. If only to save myself from bitterness, I have attempted to see my personal ordeals as an opportunity to transform myself and heal the people involved in the tragic situation, which now obtains. I have lived these last few years with the conviction that unearned suffering is redemptive.
- Martin Luther King, Jr.

You never find yourself until you face the truth.

- Pearl Bailey

Knowing what you can not do is more important than
knowing what you can do. In fact, that's good taste.

- Lucille Ball

If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome.

- Charlotte Bronte

I like living. I have sometimes been wildly, despairingly,
acutely miserable, racked with sorrow, but through it all I still know quite
certainly that just to be alive is a grand thing.

- Agatha Christie

The secret of health for both mind and body is not to mourn
for the past, not to worry about the future, or not to anticipate troubles, but
to live in the present moment wisely and earnestly.

- Buddha

Saturday, November 24, 2007

Lazy Day Today Which Adds Up to Many Posts

Ok. On one of my MS community sites, there's a guy who shall remain nameless. Let's just call him Fernando because it's nothing like his actual name. Anyway, Fernando treats his MS with Low Does Something that begins with an N (LDN) that is also used to treat heroin addition. It is hard to get LDN in this country and there is limited research on its effectiveness. Fernando thinks LDN is the answer to fu%$#@! everything! Don't get me wrong--I'm happy it works for him. BUT....when someone posts something about an unsupportive partner, Fernando goes on and on about LDN improving his mood and sensitivity to insensitive people. Fernando hates mainstream medicine, the healthcare industry, the pharmaceutical companies, etc. Well, I get that they have MANY, MANY PROBLEMS and could even be considered somewhat EVIL at times BUT...what about Live and Let Live? What about using whatever possible--mainstream and alternative--to treat MS? What about letting each person choose their own path and their own treatment? What about understanding that MS varies from person to person and that the treatment that works for one, may not work for another? What about the fact that LDN is not available to everyone and, even those who can get it, don't have the money for it? I wrote a post with a link to that MS Society video I posted here earlier and mentioned how it made me cry and how it's easier sometime to cry for others than for myself. Fernando's response? LDN. What the F&%$?

Then, there's a woman, let's call her Penelope, just because that's a funny name to me right now. Penelope is a born again Christian who literally sees, talks to, and hears from Jesus on a regular basis. I'm not saying she doesn't have a relationship with Jesus or that there's anything wrong with that, but not all of us believe in Jesus, use Jesus as our Higher Power or even have a Higher Power. So, anyway....Penelope posts something every day or twice a day with stories about what Jesus asked of her today or what she asked of Jesus today and she includes scripture. Well, bully for you, Penelope! What about the Muslims, Jews, or atheists with MS? Are they doomed to a life of suffering if they haven't been born again? I go to a Unitarian Universalist church because I HATE being told that there is one way, one answer, etc. There are many ways, many answers....perhaps as many answers and ways as there are people.

So, I'm a little bit&$@ today. I'm tired. I'm having a lazy day and I'm pissed off that I have to have a lazy day in order to have enough energy to go to a meeting and hang out with Ken tonight. I also think I am slightly depressed. I love that I have this blog to say whatever the f$%# I want and that I am even encouraged to do so for my good mental, spiritual, and physical health.

Ok. I know I can't/shouldn't/don't want to stay this angry about the MS but the timer hasn't gone off yet. And, I'm not always angry. I go back and forth. I read about my coworker with breast cancer and feel blessed to have my hair, assurance that MS won't kill me, etc. I watch, listen, and read the news and see American teenagers that are people's children dying in Iraq and feel sad and grateful that my children are too young to enlist. Then I see Iraqis and Afghans being tortured by American soldiers and contractors and feel sad and ashamed but fortunate, too, that I'm pretty sure no one can legally come to my home and take me away for imprisonment without just cause. So, what I'm saying is, MS is not the end of the world. The world is filled with a lot more suffering than I have from this brain disease. I am not so self-absorbed as to think otherwise. I just want all that world stuff to go away and MS to go away. And neither one will and that sucks.

I'm done for now.

Get a Tissue...or Twenty

MS World

"MS is not me and I am not MS." This is the kind of incredibly simple and profound advice I find at a number of MS online communities I've joined. Like me, there are a lot of people with MS who find ways to cope through creativity. Look at this really cool art I found on MSWorld.

Confusion by Linda Wiseman

An Artist's Sketch of MS by Luis Daniel Gutierrez

MS by The Bird

Friday, November 23, 2007


I recently received an invitation to join Linked In, an online networking group. I accepted on a whim and it's been great. I've reconnected with people I haven't talked to or emailed in years, including a former VP at an old job that I mistakenly thought had nothing in common with me. In reality, we are, and probably always were, very much alike. I thought Ann was hyper ambitious above and before anything in her personal life until she adopted a son and I learned that she survived her own bout with serious illness. I also found another former colleague/lead singer in a band who asked me to operate the curtain on my 34th birthday, the day after John and I eloped almost a decade ago. The day after our "wedding" at the Milton Town Hall, it was my birthday and I insisted we go out. We went to see Alex's band play and I danced with strangers and friends because John threw his back out the day before we got married.(Foreshadowing...?) Alex is now married, living in NYC, working for a Foundation that works to stop hunger in Africa and India, and he's still writing and recording music. I reconnected with another guy who was a fellow unpaid intern at WBUR who inspired me to work way harder than I would have otherwise because I liked competing with him. I remember Tim and I showing up at the same State House press conference. We stood with dueling mikes on either side of Joe Kennedy and a crowd of reporters. The minute the press conference was over, I ran to the T and rushed back to the radio station so I could edit the tape and write the story before him. I don't remember whether or not I beat Tim to the station, but I do know he made it to a paid gig at BUR WAY before me. Grrrr.

I've told all these people I have MS. In fact, I put my blog address on my Linked In listing. (Perhaps that's what prompted them to reach back. It doesn't really matter; I'm glad they did.) I am OUT with MS. The way I figure it, if people know I have MS they might be in a position to help me or I might be in a position to help them or someone they know. Besides, MS is absolutely, positively nothing to be ashamed of. I remember attending a gay rights rally when I worked at BU a gazillion years ago (I'm straight but not narrow) and everyone was chanting, "I'm here, I'm queer, get used ot it." I feel like I need a chant. How's this: "MS. I have it. I won't die, so don't cry." Now I just need a rally to try repeating it really loud in a group.

Black Friday--Although I don't plan to do any shopping, if I can help it!

The kids are watching Dragon Tales and I'm checking email and trying to figure out what we're going to do this afternoon. It's sunny but cold outside so I'm thinking the park. Hopefully, the library next door is open in case of potty breaks. (Very important for all of us!)

Ruby has her second kid's yoga class with my friend Nancy tonight. I'm so jealous. I haven't figured out a way to get there myself. I was thinking about checking out the Comcast On-Demand yoga classes after the kids go to bed. We'll see. So far, it's just been a thought.

Thanksgiving was awesome at Ken's yesterday. This may come as a shock to people who've known me for a long time, but I found I really enjoyed finding recipes, planning a menu, and COOKING! What the.....???!!!! What happened to Domestically Disabled Julie???!!!!! Hmmmph. Maybe she lives in a cave somewhere with Smoking, Drinking, and Drugging Julie. She just hung around a bit longer.

Ken came over last night which is why we've laid around all morning. Replenishing spoons. :-)

Wednesday, November 21, 2007

Funny Video from Online MS Group Buddy,com_mamblog/Itemid,47/task,show/action,user/id,15989/

If you can watch this video (with your volume turned way up) and not tap a toe or two, you must be dead! (Which, by the way, is way worse than MS.)

Thanksgiving Eve Day

It's Wednesday so I'm working at home. I'm taking a break waiting for sign off on something so I thought I would do a little blog writing.
Ken and I are making Thanksgiving dinner together tomorrow for Ruby, Zane, Matt, and Allie. I'm excited! He's going to start the turkey and I'm going to show up with the sweet potatoes and the pies. Peapod is delivering groceries tonight and I will start the sweet potatoes in the crock pot. Tomorrow morning, the kids and I will make an apple pie and a graham cracker crust frozen chocolate pudding banana cool whip pie that my grandmother always made for us when we were little. When we get to Ken's, he and I will make the garlic mashed potatoes, the squash, the stuffing, the green beans with almonds and the corn. Mmmmm. I'm getting hungry already and I'm really looking forward to hanging out with Ken, Matt, Allie, Ruby, and Zane all day.

My back is really hurting today. I think yesterday was too long of a day with work, my meeting, and then going to the mall to pick up my new glasses. Oh. I do not like my new glasses. I am bummed. I must have tried on at least 100 pairs (no exaggeration) before picking this pair of green Prada frames. And now I don't like them! It could be that my root touch up ended up making all my hair darker so I don't look the same as when I tried them on. I'm going to wear them for a week and see what I think then.

So, I drop the kids off at school and call Ken. I miss him. We haven't seen each other since dinner on Saturday night. I told him my back hurts. He asks, "Did you sleep wrong or is it the MS?" He cares, he loves me, but....I DON'T KNOW!!!!!!!!!!!!!!!!!! I'm guessing all the pain is MS related since I never had it before.

I had a VERY WEIRD DREAM last night. My car was parked somewhere and I couldn't drive it so I needed to take the train. The Alewife station on the red line was really weird with a platform going through a very elegant, large, empty house. There were not of stairs and escalators that didn't work and I had to keep climbing and climbing and climbing. I saw Pierre Vallette (old WGBH/ARTHUR colleague) searing a poncho on the platform but then after he said "hi" he walked away or ran to catch a train or something. Then, I saw a woman brutally assault her son on a skywalk (she smashed his head against a wall) and one of her girlfriends said, "Watch it! They're going to take him away from you!" I yelled up, "They should take him away from you!" and then the woman and her friends started chasing me. I heard them say, "Let's get her on the platform!" I thought they were going to push me onto the train tracks or kill me or something but instead, they threw ice cubes at me. It was very frightening! Then, I took the train to work and realized I didn't have my laptop and that it was in my car which I didn't remember where I parked. I tried to log onto Webmail from a different computer and it didn't work and my coworkers were giving me a hard time about it. WHAT THE H%##!

Tuesday, November 20, 2007


Ok. Get this. Although I am having a pretty good day today (still crappy vision in the right eye but no bad headache, neck and back pain today), I have just learned that I am DISABLED. Or at least my MS meets the requirements of disability protection under the Family and Medical Leave Act. I'm not sure this is a club I want to belong to. And who knew I NEEDED protection? Hmmmm. My boss and I meet with HR to discuss my FMLA status and accommodations after the new year. Hmmm. Was full disclosure at work a wise choice? Or maybe this is a good thing?

Monday, November 19, 2007

Do they make Depends thongs?

Dr. Pless told me I have to see a urologist. Don't ask. Well, I guess from my subject heading you don't NEED to ask. Although it is NOT the picture that Christina imagined (and told me until I laughed and then cried) with me making a puddle under my chair at work and people saying, "Oh, it's just Julie pissing herself again...she has MS, you know." I DO NOT LEAVE PUDDLES ANYWHERE....and let's hope I never do.

Why am I sharing this? Because this blog is the rough draft of my book and I want the book to tell the truth...the sometimes ugly but always real truth.

I am in a very negative place today. I'm tired of feeling this negative. But here I am so I am going to vent it. It's got to be better for me to get it out than to keep it in, right? And,'s my blog and I'll cry if I want to.

I avoid the woman at church who has MS because she's in a wheelchair and I don't want to imagine getting that bad.

When I went to the MS Society meeting on Friday night I wondered if the disorganization of the meeting is because of MS-related cognitive issues or just lack of structure.

When I told the MS Neurologist and the MS Nurse Practitioner who were supposed to be guest speakers but were never introduced that I had lesions on my thoracic spine, cervical spine, and brain, they both said, "ohhhhhh" like I needed pity. So, basically, I'm f&^%$# but lucky to be so f&^%$# in this place in the world and this time in history since there are so many disease modifying drugs.

I got an email from a friend today who is living in cohabitational, blended family bliss and I'm feeling alone and sorry for myself. I'm happy for her. And jealous.

I got another email from an old colleague who used to be a rocker and now travels to Africa and India to fight poverty and hunger. But he's still making music, too. I'm happy for him. And jealous.

Christina says that I can't Hallmark Card my way out of this one. The way is through, not around, and this is a diagnosis of MS, not a flat tire. Ya, ya. But what happens when I'M sick of my own complaining?

I've been falling asleep listening to a meditation tape every night. Although I have more patience with the kids and I feel more focused on work, my self talk sucks. Maybe after I fall asleep the voice says, "You suck!" and it's not just my negative attitude. I could be being brainwashed in my sleep!

Friday, November 16, 2007

Floppy Head and Random Thoughts

I slept 11 hours last night. I woke up at 9:09 a.m.--6 minutes before Ruby was due at school. Zane was still sleeping and both kids were in their jammies. Not a good start to the day, but I am moving on.

Did you ever make a person out of playdough and make the neck too skinny so the head flops over? That's what MS makes my neck and head feel like sometimes...particularly when I'm tired.

It's a good thing I was not the crazy live music fanatic I am (was?) sober when I was drinking and drugging. I would have been a messy, slutty groupy for sure. Hmmmm. Maybe that wouldn't have been such a bad thing.

That's all. Just some random thoughts for a Friday morning. Have a nice day.

Thursday, November 15, 2007

A Pamela Redmond Satran Poem Jen Sent Me

(In an earlier posting I erroneously attributed this poem to Maya Angelou.
Thanks for the correction, Liz.)

enough money within her control to move out and rent a place of her own, even if she never wants to or needs to...

something perfect to wear if the employer, or date of her dreams wants to see her in an hour...

a youth she's content to leave behind....

a past juicy enough that she's looking forward to retelling it in her old age....

a set of screwdrivers, a cordless drill, and a black lace bra...

one friend who always makes her laugh... and one who lets her cry...

a good piece of furniture not previously owned by anyone else in her family...

eight matching plates, wine glasses with stems, and a recipe for a meal,
that will make her guests feel honored...

a feeling of control over her destiny.

how to fall in love without losing herself.

how to quit a job, break up with a lover, and confront a friend without; ruining the friendship..

when to try harder... and WHEN TO WALK AWAY...

that she can't change the length of her calves, the width of her hips,
or the nature of her parents...

that her childhood may not have been perfect...but its over...

what she would and wouldn't do for love or more...

how to live alone... even if she doesn't like it...

whom she can trust, whom she can't, and why she shouldn't take it personally...

where to go... be it to her best friend's kitchen table...
or a charming inn in the woods...
when her soul needs soothing...

Wednesday, November 14, 2007

Misha Pless

Misha Pless may sound like a supermodel or a cocktail, but in fact, HE is my new MS specialist neurologist. And, hey, guess what? I have MS.

During my long-awaited meeting with Dr. Pless this afternoon, I found out that the third MR found additional old and new lesions on my cervical and thoracic spine and the lumbar puncture found the three bands of protein that confirm the MS diagnosis. Additionally, Dr. Pless told me that the other blood tests and spinal fluid tests Dr. Cho gave me ruled out the three diseases that mimic MS--syphilis, Lupus, and Lyme Disease.

Well...that's a relief! I'd hate to have to join three more support groups and Ken might have issues with the whole syphilis thing. Actually, I might have some issues of my own with that one.
So, Dr. Pless told me a whole lot...some good, some not so good. First the good:

  • I started the Rebif a month after diagnosis. Aggressive, early treatment is a very good thing and has been proven to reduce relapses, severity of relapses, and stop the formation of new lesions.
  • I'm not having skin reactions or bad side effects from the Rebif which means I can tolerate it well.

  • I am otherwise healthy, have been active (and even athletic) and, since I have no problems with mobility, there is no reason I can't exercise and stay strong as long as I don't get over-fatigued or over-heated.

  • I don't drink or smoke (which I already knew but is apparently good for MS.)

  • I am open to reading, learning, trying new things, etc. In other words, I am not laying down and viewing MS as debilitating. Attitude is very important.

Now the bad:

  • I have many, many lesions on my brain, thoracic spine, and cervical spine. (The back pain is not in my head. Well, actually, it is in my brain, that is. Hehehehe.)

  • My vision may never fully return to my right eye because there has been a lot of damage to my optic nerve. 5% of people with MS do not get their vision back after optic neuritis and, based on the what he saw on my right optic nerve, he thinks I'm in that group.

  • I have to get my blood taken once a month to make sure that the Rebif isn't destroying my liver.
  • I have to get an MRI every six months to see if the Rebif is working to slow the disease.

Ok. So all in all, it was a good visit. My wall of denial has another chip in it (how many doctors have to say I have MS before I totally and completely believe it, I wonder?) and I like Dr. Pless. He's smart, obviously valued at MGH (big office with adjoining exam room), not arrogant, left tons of time for my questions, liked me (very important!), specializes in MS, and seems to have a very positive, aggressive approach to treating this monster of a disease. He told me that he has a patient who has had MS for 10 years and she runs marathons and is training to climb Mt. Everest. I want to be her. Well, not her exactly (I kind of like being me!), but I want to be that kind of active. I told Dr. Pless that my friend Christina believes I am going to end up lobbying Congress for stem cell research and he thought that was a very good idea. I told guy.

Oh! I almost forgot the absolute best part of having my appointment today. While I was taking the train to MGH, Boomers was installing my car stereo (that was a MUCH APPRECIATED hand-me-down from Karen Teacup). I have tunes at last!

To summarize: I have MS, I don't have syphilis, and I can now sing at the top of my lungs with actual musical accompaniment in the KGB car.

Tuesday, November 13, 2007

Made Me Laugh

I just read this list on an MS support site:

Deep Thoughts for Those Who Take Life Way Too Seriously
1. Save the whales. Collect the whole set.
2. A day without sunshine is like.... Night.
3. On the other hand, you have different fingers.
4. Remember, half the people you know are below average.
5. He who laughs last thinks slowest.
6. Depression is merely anger without enthusiasm.
7. Support bacteria. They're the only culture some people have.
8. A clear conscience is usually the sign of a bad memory.
9. How many of you believe in psycho kinesis?... Raise my hand.
10. what's the speed of dark?
11. When everything is coming your way, you're in the wrong lane.
12. Everyone has a photographic memory. Some just don't have film.
13. How much deeper would the ocean be without sponges.
14. What happens if you get scared half to death twice? 15. I couldn't repair your brakes, so I made your horn louder.
16. Why do psychics have to ask you for your name?
17. Inside every older person is a younger person wondering what happened.
18. Just remember--if the world didn't suck, we would all fall off.
19. Light travels faster than sound. That is why some people appear bright until you hear them speak.
20. Life isn't like a box of chocolates.... it's more like a jar of jalapeno's; what you do today, might burn your ass tomorrow.

Monday, November 12, 2007

Angry Day


I'm done...for now. Thanks for letting me share.

Friday, November 09, 2007

Emailing Mardene (rhymes with sardine)

Mardine is my sister-in-law. My older brother John, after NUMEROUS failed engagements, married this lovely and vivacious woman who is a flame eating, unicycle riding, juggler with big boobs and a tiny waist last year (or was it the year before?). Anyway, after living in Hawaii for a few years, John and Mardene bought a house in Lake Tahoe but then decided to travel the country in an RV. We saw them when they came East in the summer BMSD (Before MS Diagnosis).

Mardene and I share our status as clean and sober women and we email each other. Here's our exchange about my MS...naturally, it's in the annoying reverse chronological order.

Julie,Hi there. I am sooo soryy for not getting back to you any sooner. I have not checked my messages in a couple of weeks. It seems to take sooo long with the lap top in the RV. We are almost home, back to CA, hopefully by next Wednesday. I am over being in the RV. We have done soooo well together. I am actually quite surprised. I suppose it's cause we really do love and even really and trly like each other.As for you, my dear Julie. I am soooo sorry that you are going through all of this. You really did explain things to me perfectly so now I understand better. Thank you for that. I wish I could help. I believe that prayers are always good. That will continue, from my heart to yours. I will let John know what is going on with you. After I get home I will keep in touch better. I am glad you are staying positive. Dancing is always good for the soul. I will keep you in my daily prayers. Stay in touch. Be good to you. Say prayers for safe travels.MAY GOD BLESS AND KEEP YOU,Mardene!!!>

Mardene,> Thanks for the prayers.> Hmmm. MS is very hard to describe. I don't totally get it myself. >It's all new to me. I was disagnosed after losing the vision in my right >eye and then starting to lose some in my left.> It is a disease of my brain and central nervous system so it can affect >literally anything (sight, mood, motor function, memory, reasoning, speech, >hearing, etc.) So far, I have lost probably 50% of the vision in my right >eye, more when I'm tired); I have electric shock feelings up and down my >spine and in my wrists, shins and ankles (also worse when I'm tired) and, >as of a few days ago, I have numbness and cramping from my right hip down >to my toes. The fatigue and the body temperature on on and off too. I am >VERY affected by heat and have what I imagine hot flashes feel like. I can >also feel like I need a nap shortly after I wake up in the morning.> I have to talk to my neurologist this week about the new symptoms to see >if I have to go back into the hospital for steroid infusions (outpatient, >thank God). I take a subcutaneous injection of a disease modifying drug 3X >a week, try to get extra rest, try to ask for more help, etc. so I guess >the answer is YES, it definitely affects my everday life. I used to keep a >lot of stuff in my head and I find that things slip through the cracks when >I do that now. Especially at work. I am having to learn new ways to >organize, etc. to make up for what could be MS or what could be just >getting old and/or stress.> I try to stay positive but I don't feel totally like myself. I went to >an AA anniversary dance last night and it was awesome. I danced and danced >and felt like me. Until I got overheated and had to sit down. But the >positive is that I danced and it felt good and I have to find more things >that feel good. Sex is always a good one and when we don't have child care >dilemmas, Ken is always happy to oblige.) I am trying to get power walking >again, but it's hard when the energy level is so low after work.> Long answer. :-) But you did ask.> Keep> Hugs to my brother.> Julie>>

Mardene Baker wrote:>>Good Morning Julie,>>We have left Tony's. It was nice to stay there. He lives right on the>Canal in Cocoa Beach. He likes to smoke pot a lot though. I can only take>so much of that. He is a lawyer and he was gone most of everyday. I>enjoyed the house when he was at work. We went to a couple of meetings>while we were there. Now we are at Ft. Myers Beach. It is lovely here. I>have never been here. Just until tomorrow. We wanted to be at the Beach>with our RV.>>So, your friend wants to rock out in a RV? It certainly is a way of life.>The first one, the one we rented, those people had three kids and traveled>and lived in there 36 foot RV. WOW!!! That takes a lot of patience.>Please, do give her my address. Please tell her to put the topic of RV so I>open it.>>How are you feeling? I must ask Julie and I hope you don't mind. Do you>feel bad on a daily basis? I have never know anyone, personally, who has>MS. I would like to know what you feel. Has it affected your body and will>it and what is this process? I only read your blog once in a while, that is>why I am asking you to write to ME and explain so that I understand what >you>are going through. You are my Sister In Law. I pray for You... everyday.>You are the J in my A to Z in my morning prayers. Let me know how you are.>I don't get on line everyday. But, Just For Today.... I could. Have a>great Sunday. Be good to you.>>PEACE, LOVE AND BLESSINGS,>Mardene!!!>> >

From: JM Baker> >To: Mardene Baker> >I love Paella! I actually ate it in Madrid, Spain once.> >> > I have a friend who is thinking about taking her husband and two kids on> >the road for a year in a big RV like yours. Can I give her your email> >address? Her name is Liz and she is also a friend of Bill W's.> >> >> >

Mardene Baker wrote:> >> >Hi Julie,> >> >I am glad to hear back from you. We are in Cocoa Beach, FL. We staying> >with John's friend, Tony Hernandez. He said he never did meet you. He is> >cooking dinner tonight. It's called Paellea. It's a Spanish dish. We are> >getting the RV worked on. It should be ready by Friday and then we will> >head out west, back to where we actually live. We are doing well. I hope> >we can keep on chatting like this. Be good to you.> >> >PEACE, LOVE AND BLESSINGS,> >Mardene!!!> >> > >

From: JM Baker> > >To: Mardene Baker> > Thanks, Mardene. Where are you guys?> > >> > >
Mardene Baker wrote:> > >HI Julie,> > >I finally could get on line and check out your Blog. I love the Volvo. >It> > >looks like you are doing well. I am soooo glad that you got the car you> > >wanted. I h ope your body is strong and not bothering you. You keep up> >the> > >good positive blogging. Be good to you.> > >PEACE, LOVE AND BLESSINGS,> > >Mardene!!!

Thursday, November 08, 2007


My shins hurt. I feel like I have shin splints. But I haven't been running so I would guess it's the MS. In fact, my legs feel heavy all the way down. Like I'm wearing weights on my ankles, knees, and thighs. Nope. I just looked. No weights. It's probably the MS.

Kissing Ken this morning was nice. The commute to work was not. It was cold and very, very long. The good news is that I got a ride home from my co-worker and fellow Weymouthian...or is it Weymouthite? Yay. Unfortunately, I have to replace the heater core on my car and it won't be ready until tomorrow. Oh well. At least when I pick up the kids tomorrow, we will not be able to see our breath in the car.

Wednesday, November 07, 2007

Commuting Publicly

If we accept that life is always trying to teach us exactly
what we need to learn, we can view everything that happens to us as a gift. Even experiences that are uncomfortable or painful contain within them an important key to our healing, wholeness, and prosperity. We may have difficulty understanding what the mirror of life is trying to show us, but if we sincerely ask for the learning and the gift in every experience, it will be revealed to us one way or another.

- Shakti Gawain

I love public transportation. I'm weird like that. Maybe it's because I took the T every day when I first moved to Boston. These days (and for about the last decade), I've been in the suburbs and I spend way too much time sitting in traffic on the highway every day.

MS has given me the opportunity to revisit public transportation...A LOT. First of all, I had the pretty severe and sudden optic neuritis (twice) and couldn't drive for many days (the RMV frowns on blind people operating a car). So people (mostly Ken) gave me rides to drop off the kids and get to the T. Then I took the train to Harvard Square and took the shuttle to work. And then there were all the doctors' appointments at Mass Eye and Ear and Mass General Hospital. Much easier to get there by T and not have to worry about parking.

So, today, when I had a 2pm appointment that I waited two months to get with an MS specialist neurologist at MGH AND I had to take my car into the shop, I wasn't worried. I'll just take the T, I thought. Yay! An opportunity to listen to music and read my novel.

Cut to the chase. I drop the kids off at school, drop the car at the garage next door to my complex, walk home, do some work for a few hours and have Ken come get me to take me to the train. I JUST miss the inbound train and, because it's lunchtime, I have to wait almost 20 minutes for the next one. I take the train to Charles MGH, walk TOO FAR down Cambridge Street to the wrong entrance to MGH with sore legs and hips (new symptom or post-coitus muscle aches?). I back track to the correct entrance and get to the Neurology office at 2:05pm. My appointment was at 2:00. I checked in nervously, thinking of the reminder note in my bag that told me to arrive 15 minutes early since this was my first visit with this particular doctor. (Why IS that, by the way. Why don't they make the appointment for 1:45 if that's when they want you there???!!!) Anyway, I was prepared for a scolding but not what I heard: "Your appointment has been canceled." Say WHAT???!!!!

After talking to three other secretaries and repeatedly brandishing my blue hospital card, I learned that, although I didn't cancel it, my other neurologist and his secretary didn't cancel it, and the new neurologist and his secretary didn't cancel it, the appointment was nonetheless cancelled. Once again, I am a medical mystery.

I did not yell. I did not cry. Instead, I very calmly explained to Dr. Pless' secretary that I took the afternoon off of work and took a train to be there and that I needed to see Dr. Pless because Dr. Cho SAID I should and I was recently diagnosed with MS. Because I did not yell or cry or make a scene like I may have done on a different day, she squeezed me in for next Wednesday at the same time. I will, of course, call on Tuesday to confirm that I do have an appointment.

So, then, it was back to the train and, because Ken was busy with a home inspection, I took a BUS from the train station home. I make fun of Ken for not taking public transportation but I have to admit: I haven't been on a bus in about 10 years.. I felt like such a dork, not knowing how to put my Charlie card (kind of like a T pass for you non-public transportation people) into what used to be the money thing at the front of the bus. The driver was very nice. The high school kids waiting behind me in line weren't. The very long bus ride was pretty uneventful and I watched other people push the "next stop" bell so I would know how to do it when the time came.

I picked up my car (which the garage could NOT fix, by the way) and went home to do more work before making dinner and picking up the kids. I made an appointment for my car at a different garage for tomorrow, which means I'm taking the T to work. FUN! The good news is that I will get a morning kiss from Ken who is dropping me off at the T. There is ALWAYS a gift in each experience.

Friday, November 02, 2007

The good stuff today in no particular order:

  • Watching a hysterical sock puppet music video Sonja had on her blog.
  • Listening to Ruby and Zane giggling in the backseat on the way to the meeting tonight.
  • The meeting tonight.
  • Getting a totally unexpected present in the mail today from my friend Laura who bought me a handmade necklace in Brussels.
  • Talking to my cousin Karen on the phone and looking forward to seeing her, her family, and her new paintings when we go down to the Cape tomorrow.
  • Getting my hair cut and feeling like a million bucks when I walked out of the salon.
  • Making an appointment to get my car stereo installed on Wednesday (not another week with no music on my commute!)
  • Having the inspiration to put a battery-powered "boombox" on the passenger seat in my car tonight so I wouldn't have to be music-free until Wednesday.
  • Having time to rest and talk to my Higher Power/Inner Spirit during the MRI today.
  • I will probably get to finish Eat, Pray, Love tonight. Ooooh. Maybe that's a BAD thing because it will be over. :-(
  • Reading Ruby's Wish to my Ruby and her little brother before bed tonight.
  • Feeding my neighbor's very fat cats and realizing that her condo is NOT a million times better than mine.

The not-so-good stuff today:

  • Driving all the way to Chelsea (remote MGH facility) for YET another trip through the incredible spacious (NOT!) MRI tube.
  • Going to the gym to cancel my monthly-draft gym membership and having the not-so-hot bald guy ask me why I was cancelling and then berate me for "not being able to afford" a healthy lifestyle.
  • Letting the aforementioned gym guy get to me because I was already feeling guilty about not working out and then getting bitchy back with him so now I feel like I can't join QAC again in the future.
  • Realizing at 2pm that I hadn't eaten anything today.
  • Learning at the end of the day that even though I stayed up until 1am working on it last night (or maybe BECAUSE I stayed up until 1am working on it), I either made or did not catch YET ANOTHER MAILING LIST ERROR on a project I am managing at work. Uggh.
  • Getting a nasty email from John about Veteran's Day "coverage" for the kids.
  • Realizing at midnight that I never called Diane back today.