Maybe I'm Just Lazy: One Woman's Journey Through MS and Life

Tales of Woe on The Ride

noreply@blogger.com (Julie M. Baker) — Tue, 24 Jan 2012 00:25:00 +0000

I took The Ride home from work today. John was my driver. I know this because he said, "Hi! My name is John." But when I returned the favor and began to introduce myself, he interrupted me and said, "Yes, I know. It's on my clipboard."

Ok....

Before the introductions, though, there was the actual arrival of The Ride vehicle. I was thrilled when John pulled up in a sedan instead of the short bus. I despise the back-up (BEEP, BEEP, BEEP!) signal. Because I was outside waiting, I walked right up to the car and opened the passenger door. John scrambled to get out of the driver's seat and quickly came around to assist me into the vehicle as he yelled, "Wait right there!"

I assured him that I was fine, that I just had low vision, and that I didn't need any help buckling in, but still, John reached in and fought me for the seat belt. It probably will come as no surprise that I won.

While we were pulling out of my office park, John began to complain about how the GPS told him the wrong way to go to my office. I made commiserating noises ("Oh, I know, it's terrible...") and told him that's why I tell the dispatcher the correct way to go every time I call and that I was sorry that that information wasn't passed along to him.

"It was," John said sharply.

Ok....

"But now I have to find Aboretum Drive," he grumbled. "And they only gave me 5 minutes to get there and it's supposed to be my lunch break."

I made more sympathetic statements: "Oh. That's terrible. I hope you get a chance to eat soon...."

John then asked me if I was coming home from work. When I started to answer him, the dispatcher called on the radio. "Shh!!!!!" John said, as if I was talking out of the blue while he was on the phone with the President of the United States.

Ok....

When he finished his conversation with the dispatcher, he seemed to forget that he had asked me a question for which he had not yet received an answer. I decided it was best to let it pass. During the drive to pick up the second passenger, John told me many things that he did not like about his job including the demands of the reservationists and dispatchers; the rudeness of some of the passengers; poor road conditions; the camera that watched his every move; and the accidents. The last one scared me a little but I just listened and made what I hope were sympathetic noises ("Mmmmm. Really?").

We pulled up to the second passenger's house 13 minutes later. I know exactly how long it took since John announced it when we arrived: "That took 13 minutes and they wanted me to do it in 5!"

I told John that I would be happy to get in the backseat if the person was elderly or had difficulty getting in or out of the car. He cut me off with "No need" and went around to let her in the backseat on my side.

"Can you push the seat up?" he yelled, as if I was purposefully reclining while a 6-foot tall person with two canes was trying to get in behind me. Marilyn was probably 5' 5" and had no assistive devices of any kind.

Ok...

Thank goodness, my fellow passenger was much more successful at commiserating with John. Actually, John and Marilyn sort of one-upped each other during the trip to my house with all the terrible things about The Ride. I tried to chime in once with my story about Mr. Jones but they didn't seem interested so I shut right up. Apparently, my true Pollyanna nature shined through and I wasn't fooling anybody with my attempts at grumbling.

I made it home, safe and sound and grateful to be me. Just for today, the glass is half full.

ADA Violation of Just Bi%&#y Behavior?

noreply@blogger.com (Julie M. Baker) — Tue, 17 Jan 2012 04:44:00 +0000

My MS-related vision impairment is complex. I think it's because the problem lies with my optic nerves and their connection to my brain and not my eyes themselves. I can't see far away, I prefer reading large print, I see worse when I am in motion (e.g., while walking or in a moving car), my vision is worse in the dark, and I experience visual confusion when there is too much visual information coming at me (e.g., walking through a crowded mall). So, when I do something in a large group, I usually get there early to make sure I can be up close. Which is exactly what I did when my friend Julie invited me to her Zumba class at the YMCA.

It was only my second Zumba class ever and, according to Julie, the teacher for this particular class was very good and very popular. We got in line (yes, Candice is that popular) about 20 minutes before the class began. Julie estimates that we were about 15th in line. When the doors opened and I entered the dimly lit gym, I did not exactly run to the front of the room, but I didn't saunter either. I find a spot and stood a couple of feet back from the mirror in the center of the front row. The room quickly filled up with people.

"That's not going to work for me," said a voice that came from a fit, thirty-something woman dressed in expensive, work-out wear who suddenly appeared just over my left shoulder. She stretched out her arms to indicate that I would be in her way.

So, I stepped forward. Another voice, attached to another woman who could have been the sister of the first Zumba apostle, said "That's where the teacher has to be."

So, I stepped back and to the right. "That's my spot," said a third woman, who walked up and pointed to a water bottle that she had placed on the floor.

After the fourth woman informed me that I was not where I was supposed to be, I finally said, "I can't see very well, I need to be up close."

"Well, you can't be there," she responded.

Before retreating, I turned around smiled at all the voices and said, "Thanks so much for the warm welcome."

I heard my friend Julie arguing with one of the woman and yelling for me to come back, but I just said, "That's ok" before moving way over to the second or third row at the far right of the crowded room, nowhere near the teacher or the mirrors.

When the music came on (and I assume the teacher had entered the room), I felt some trepidation. I knew that, even from the front row, I would probably have trouble following the complicated Zumba moves. From my new vantage point, I was worried that I would smash into the stack of hand weights up against the right side wall and/or get in other people's way. I briefly considered leaving but I thought, "Nope. Don't let the Zumba meanie mommies scare you off."

And I didn't. I did what I do and I made the best of it. There was a woman in front of me who was pretty good at Zumba. So, she became my unpaid instructor. I followed her as best I could and I think got a pretty good workout. I was definitely sweating by the end of class. By the time the hour class was over, I was having a blast, doing my own thing and dancing along with the music when I couldn't follow the moves of the class.

I made my way over to Julie, who had not relinquished her spot in the front row. She immediately took my arm and brought me up to loudly introduce me to the instructor, Candice. I thought it was a little odd but I smiled and told Candice that I enjoyed her class...which I did.

On our way home, I found out what happened after I retreated from the front row and why Julie made a point of introducing me to the instructor at full volume. Apparently, Julie tried to explain to one of the Zumba bullies that I had low vision and needed to be up close. The woman argued back and ultimately threatened Julie when she did not immediately back down. "I will see to it that you will not be here next week," she promised.

What??? I almost wish I had stayed in my original spot so she would have said it to me. I'd like to think I would have laughed in the woman's face and demanded to know exactly what she intended to do to ban me from future Zumba classes. Would she call in her henchmen to make fun of my Walmart work out wear until I shrunk away in shame? Would she report me to the Zumba meanie mommy mafia and throw me in the pool with barbells tied to my cross trainers? Would she lock me in the sauna and turn up the temperature until I was found shriveled up and too weak to ever Zumba again?

I love that Julie stood up for me. She is a good friend and it didn't stop with the class. I found out today that she also sent a letter to the Y, demanding that the organization apologize to me and do something to prevent this kind of bullying behavior in the future. I was so touched by her mama-bear defense of me that I posted something to my Facebook status about being in great company with someone else who sends angry letters to fight injustice.

Another Facebook/real-life friend volunteered to speak to someone he knows who serves on the board of this particular YMCA. He suggested that this is an issues of the Y condoning a violation of the Americans with Disabilities Act if the organization fails to respond.

Wow. I never thought of it that way. Naturally, because I still have trouble seeing myself as someone with a disability (remember that I am the person who waited two years before sending in my Ride application?), I thought, "What? That's crazy! These were just some over-entitled, over-zealous suburban Zumba aficionados who would step on anyone who got in their way. Should the Y have to respond to their rudeness?"

But maybe they should. The fact is, I have low vision which is considered a disability. Right?

I am not a shrinking violet. I retreated because I was new to the class and was unsure of the rules. I wouldn't do that again. I would hold my position, smile politely and powerfully, and explain that I got there earlier to get a spot up close so that I could see the instructor and, if they didn't like how close I was too them, perhaps they should move to a new spot.

But what about people with low vision who may not have so much chutzpa? What about people who regularly retreat when they are confronted with meanness and an unwillingness to provide reasonable accommodations? You could say, and I would probably agree with you, that these Zumba meanie mommies would have been just as rude to anyone, regardless of their ability to see. But, should a person with a disability use the ADA to smack down rude people?

What do you think? Talk amongst yourselves. But comment, too, because I really do want to know what you think.

The Power of Wishful Thinking

noreply@blogger.com (Julie M. Baker) — Fri, 13 Jan 2012 03:26:00 +0000

A few minutes before The Ride was due to pick me up at work today, I told a colleague that I wished the driver would text me when the vehicle pulled up outside. The words were barely out of my lips when I heard the ping of a text message from my boss in the parking lot. "Julie, your Ride just pulled up outside."

Wow.

Maybe I should start wishing out loud for some even better stuff. Well, not stuff exactly, but things to happen. I don't want to be ungrateful but...GEEZ! I definitely don't want to waste my power of wishful thinking on electronic communications from a bus driver!

So here goes. I am making these statements out loud as I write this. And just to take the pressure off, this is, by no means, an exhaustive list of my wishful thinking.

I wish that my children grow up to be happy, healthy, and loving adults who want to spend time with me. I wouldn't mind, either, if they nominated me for Mother-of-the-Year...but that's really not the most important part of this wish.

I wish that the man of my dreams shows up exactly when I'm ready for him and thinks that I am the most beautiful, funny, and smart woman he has ever met. I'll know that he thinks this because he will tell me often and I will, naturally, think and express the exact same sentiments about him.

I wish that President Obama gets elected for a second term and that he starts doing more of the important work I thought he would do. I wish that he will stop giving a crap about playing politics to avoid pissing off the moderates since he won't need to run for reelection again.

I wish that I continue, on most days, to see my MS as a gift that gives more than it takes...mostly in the form of life lessons and gratitude. I wish that I continue to feel great, but that I still cheer louder than anyone at the We Found a Cure for MS parade.

I wish that I have the opportunity to travel to many new places and meet many new people around the world.

I wish that the housekeeping elves visit me in the night and clean all those corners I never notice until I drop something on the floor...especially, the ones in the kitchen and the bathrooms. Actually, dusting would also be nice. Oh...and the refrigerator could use a good scrubbing, too. What the heck! I wish the elves would come and clean every single inch of my house.

I wish that I always want to be the first person on the dance floor and the last person to sit down.

I wish that I remember that I don't need to spend money I don't have on things I don't need to impress people I don't even like. (Thanks for that reminder, Kat!). And with all the money I save on not acting out on my fears of other peoples' opinions, I wish that I organize my finances once and for all.

I wish that I regularly find opportunities to stay out too late listening to loud, live music...and I wouldn't mind getting to meet the band either since I need to let the 12-year old groupie inside me come out to play every now and then.

I wish that I am surrounded by love and laughter and that I keep on learning and growing until the day I die...when I'm a very old woman wearing purple.

Oh, and I wish for peace on earth, an end to world hunger, and a home for everyone.

What do you wish for?

My MS, Your MS

noreply@blogger.com (Julie M. Baker) — Fri, 06 Jan 2012 04:54:00 +0000

I know I have MS. And most people who know me (and some that don't) know that I have MS. It's not a secret. I tell anyone who asks and/or who I think would benefit from that knowledge. I participate in MS fundraising events, I have this blog, and I have an online identity as Lazy Julie in the MS community.

But you know what? MS is different for every single one of us. If you were to gather 100 people in a room, we would probably have 100 different stories of diagnosis and symptoms. So, it stands to reason that we will have different ways to treat our MS and to respond to the fact that we have MS.

Since MS is my disease, I do it my way. Currently, I'm doing it without prescription medication. As I've described here, I am now taking vitamin D, probiotics, have a gluten-free and lactose free diet, pray and meditate daily, and try to exercise every day (and most days, I succeed).That's me.

You, on the other hand, may take injectable, disease modifying drugs. You may take oral MS medication. You may get regular infusions of Tsysabri or solumedrol. You may take LDN. You may have had the CCSVI "Liberation" procedure. You may do none of those things. Or many. Or have your very own regiment. But you know what? It's YOUR disease and that's your choice.

You can and should do exactly what works for you and, as long as you don't try to convince me to do it your way, we're good.

I go to a Unitarian Universalist church. I didn't go to church for years. I didn't want to and I didn't need to. I had kids and that changed for me. So now I go. But you know what? I don't tell YOU to go. I am totally ok with any god, goddess, or whatever that you worship or if you believe in absolutely nothing. That is your choice and I'm ok with that. I would NEVER, EVER try to convince you to share my spiritual beliefs (in part, because they are kind of fluid). If you ask me what I believe or how I practice my particular brand of spirituality, I would be happy to tell you. I would not, however, enter a spiritual debate with you. In my opinion, spiritual beliefs or lack thereof, are a personal decision and it's absolutely none of my business, as long as your beliefs don't infringe on my freedoms or beliefs.

It's kind of the same thing with MS treatment. Tell me what you do, I will tell you what I do, but PLEASE let's respect our differences. We share a disease but not a personality.

Let's make a deal. Don't tell me that the doctors I trust are lying to me and I won't tell you the same. Don't tell me or anyone else that the drugs they are taking are poisoning them and I won't make negative comments about your treatment of choice. Don't call anyone a freak or a crazy person because they are taking part in controversial treatment and I won't either.

Do me a favor: talk about yourself and your own experience. Don't lecture or harass. And, while I'm ranting, please don't tell me how I should change my Facebook status to show my support for people with MS. I support MS causes in my own way and I update my Facebook status in my own way.You are not the boss of me or my MS.

As always, thanks for letting me share.

The Single Woman

noreply@blogger.com (Julie M. Baker) — Thu, 05 Jan 2012 03:00:00 +0000

This blogger has a wonderful description of the single woman...like me.

Nuf said...for now.

Happy New Year

noreply@blogger.com (Julie M. Baker) — Wed, 04 Jan 2012 00:24:00 +0000

Do you make New Year's resolutions? A new friend suggested coming up with a list of positive things to do in the new year instead of picking random bad stuff to give up. He's chosen the number 12 for 2012 so I'll go with that, too.

Here are 12 things that I intend to do in 2012, in no particular order since I am making them up as I go along.

Play with the kids more. Zane's new foosball table will help.
Pray, meditate, and do my spiritual/12 step writing every day, even if it's just a few minutes.
Blog more.
Dance more. I started out pretty well with this one since I went dancing New Year's Eve and New Year's Day. I LOVE to dance!
Keep finding new ways to move my body. Last week, it was Zumba and spin class. Who knows what this week will bring!
Surround myself with people who are kind and make space in their lives for me.
Let go of the mean/sad stuff.
Keep eating more healthy than not.
Help more.
Take more baths. Bonus if I use the expensive bath oil Christina bought me in England.
Walk outside all year long.
Do more yoga, even if it's just sun salutations in the morning.

Website Wisdom

noreply@blogger.com (Julie M. Baker) — Thu, 15 Dec 2011 02:00:00 +0000

I shamelessly stole the wisdom below from http://www.marcandangel.com/. I think I just found my resolution list for 2012.

30 Things to Stop Doing to Yourself

When you stop chasing the wrong things you give the right things a chance to catch you.

As Maria Robinson once said, “Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” Nothing could be closer to the truth. But before you can begin this process of transformation you have to stop doing the things that have been holding you back.
Here are some ideas to get you started:

Stop spending time with the wrong people. – Life is too short to spend time with people who suck the happiness out of you. If someone wants you in their life, they’ll make room for you. You shouldn’t have to fight for a spot. Never, ever insist yourself to someone who continuously overlooks your worth. And remember, it’s not the people that stand by your side when you’re at your best, but the ones who stand beside you when you’re at your worst that are your true friends.
Stop running from your problems. – Face them head on. No, it won’t be easy. There is no person in the world capable of flawlessly handling every punch thrown at them. We aren’t supposed to be able to instantly solve problems. That’s not how we’re made. In fact, we’re made to get upset, sad, hurt, stumble and fall. Because that’s the whole purpose of living – to face problems, learn, adapt, and solve them over the course of time. This is what ultimately molds us into the person we become.
Stop lying to yourself. – You can lie to anyone else in the world, but you can’t lie to yourself. Our lives improve only when we take chances, and the first and most difficult chance we can take is to be honest with ourselves. Read The Road Less Traveled.
Stop putting your own needs on the back burner. – The most painful thing is losing yourself in the process of loving someone too much, and forgetting that you are special too. Yes, help others; but help yourself too. If there was ever a moment to follow your passion and do something that matters to you, that moment is now.
Stop trying to be someone you’re not. – One of the greatest challenges in life is being yourself in a world that’s trying to make you like everyone else. Someone will always be prettier, someone will always be smarter, someone will always be younger, but they will never be you. Don’t change so people will like you. Be yourself and the right people will love the real you.
Stop trying to hold onto the past. – You can’t start the next chapter of your life if you keep re-reading your last one.
Stop being scared to make a mistake. – Doing something and getting it wrong is at least ten times more productive than doing nothing. Every success has a trail of failures behind it, and every failure is leading towards success. You end up regretting the things you did NOT do far more than the things you did.
Stop berating yourself for old mistakes. – We may love the wrong person and cry about the wrong things, but no matter how things go wrong, one thing is for sure, mistakes help us find the person and things that are right for us. We all make mistakes, have struggles, and even regret things in our past. But you are not your mistakes, you are not your struggles, and you are here NOW with the power to shape your day and your future. Every single thing that has ever happened in your life is preparing you for a moment that is yet to come.
Stop trying to buy happiness. – Many of the things we desire are expensive. But the truth is, the things that really satisfy us are totally free – love, laughter and working on our passions.
Stop exclusively looking to others for happiness. – If you’re not happy with who you are on the inside, you won’t be happy in a long-term relationship with anyone else either. You have to create stability in your own life first before you can share it with someone else. Read Stumbling on Happiness.
Stop being idle. – Don’t think too much or you’ll create a problem that wasn’t even there in the first place. Evaluate situations and take decisive action. You cannot change what you refuse to confront. Making progress involves risk. Period! You can’t make it to second base with your foot on first.
Stop thinking you’re not ready. – Nobody ever feels 100% ready when an opportunity arises. Because most great opportunities in life force us to grow beyond our comfort zones, which means we won’t feel totally comfortable at first.
Stop getting involved in relationships for the wrong reasons. – Relationships must be chosen wisely. It’s better to be alone than to be in bad company. There’s no need to rush. If something is meant to be, it will happen – in the right time, with the right person, and for the best reason. Fall in love when you’re ready, not when you’re lonely.
Stop rejecting new relationships just because old ones didn’t work. – In life you’ll realize that there is a purpose for everyone you meet. Some will test you, some will use you and some will teach you. But most importantly, some will bring out the best in you.
Stop trying to compete against everyone else. – Don’t worry about what others doing better than you. Concentrate on beating your own records every day. Success is a battle between YOU and YOURSELF only.
Stop being jealous of others. – Jealousy is the art of counting someone else’s blessings instead of your own. Ask yourself this: “What’s something I have that everyone wants?”
Stop complaining and feeling sorry for yourself. – Life’s curveballs are thrown for a reason – to shift your path in a direction that is meant for you. You may not see or understand everything the moment it happens, and it may be tough. But reflect back on those negative curveballs thrown at you in the past. You’ll often see that eventually they led you to a better place, person, state of mind, or situation. So smile! Let everyone know that today you are a lot stronger than you were yesterday, and you will be.
Stop holding grudges. – Don’t live your life with hate in your heart. You will end up hurting yourself more than the people you hate. Forgiveness is not saying, “What you did to me is okay.” It is saying, “I’m not going to let what you did to me ruin my happiness forever.” Forgiveness is the answer… let go, find peace, liberate yourself! And remember, forgiveness is not just for other people, it’s for you too. If you must, forgive yourself, move on and try to do better next time.
Stop letting others bring you down to their level. – Refuse to lower your standards to accommodate those who refuse to raise theirs.
Stop wasting time explaining yourself to others. – Your friends don’t need it and your enemies won’t believe it anyway. Just do what you know in your heart is right.
Stop doing the same things over and over without taking a break. – The time to take a deep breath is when you don’t have time for it. If you keep doing what you’re doing, you’ll keep getting what you’re getting. Sometimes you need to distance yourself to see things clearly.
Stop overlooking the beauty of small moments. – Enjoy the little things, because one day you may look back and discover they were the big things. The best portion of your life will be the small, nameless moments you spend smiling with someone who matters to you.
Stop trying to make things perfect. – The real world doesn’t reward perfectionists, it rewards people who get things done. Read Getting Things Done.
Stop following the path of least resistance. – Life is not easy, especially when you plan on achieving something worthwhile. Don’t take the easy way out. Do something extraordinary.
Stop acting like everything is fine if it isn’t. – It’s okay to fall apart for a little while. You don’t always have to pretend to be strong, and there is no need to constantly prove that everything is going well. You shouldn’t be concerned with what other people are thinking either – cry if you need to – it’s healthy to shed your tears. The sooner you do, the sooner you will be able to smile again.
Stop blaming others for your troubles. – The extent to which you can achieve your dreams depends on the extent to which you take responsibility for your life. When you blame others for what you’re going through, you deny responsibility – you give others power over that part of your life.
Stop trying to be everything to everyone. – Doing so is impossible, and trying will only burn you out. But making one person smile CAN change the world. Maybe not the whole world, but their world. So narrow your focus.
Stop worrying so much. – Worry will not strip tomorrow of its burdens, it will strip today of its joy. One way to check if something is worth mulling over is to ask yourself this question: “Will this matter in one year’s time? Three years? Five years?” If not, then it’s not worth worrying about.
Stop focusing on what you don’t want to happen. – Focus on what you do want to happen. Positive thinking is at the forefront of every great success story. If you awake every morning with the thought that something wonderful will happen in your life today, and you pay close attention, you’ll often find that you’re right.
Stop being ungrateful. – No matter how good or bad you have it, wake up each day thankful for your life. Someone somewhere else is desperately fighting for theirs. Instead of thinking about what you’re missing, try thinking about what you have that everyone else is missing.

What do you think? With December quickly coming to a close, are you thinking about resolutions for the new year yet?

Crazy or Lucky?

noreply@blogger.com (Julie M. Baker) — Wed, 14 Dec 2011 03:08:00 +0000

I have an incredibly low level of MS disability. I have low vision. That's it. Most people don't even know until I tell them. I don't walk around with a red-tipped cane and I do not have a seeing-eye dog or a miniature horse. But, I no longer drive, I prefer reading large-print books, and my brain makes up really cool stuff when I can't see something--my cousin LOVES telling people about the blue, square cow I saw in a bog on the Cape. Still, it's not that bad. But I know that many people with MS are not so lucky.

I went to the Partners MS Center yesterday which, as the name would imply, only treats people with MS. I get very good care there but I hate sitting in the waiting room. Are the chairs uncomfortable? Is the muzak horrid? Are the magazines old? Nope. It's because I see people with MS there. And many of them have visible disabilities. It's embarrassing, but true.

I wonder about them. How long have they had MS? Has the pretty woman with the purple scarf been in a wheelchair for a long time? Does the man in the denim leisure suit always need a cane? Is the young blond woman's hair thin because she is getting chemo for MS? Do these people have good days? When they look at me, do they remember walking in like me, unassisted and on their own steam? Are they pissed? Are they hopeful? Would they think I'm nuts if they knew that I was choosing not to take disease modifying drugs?

Even though they make me wonder, I STILL leave the Center believing, without a shadow of a doubt, that I am going to continue to be one of the lucky ones. Am I crazy?

No New Lesions...No New Meds!

noreply@blogger.com (Julie M. Baker) — Tue, 13 Dec 2011 01:05:00 +0000

Today has been an awesome day...although it didn't start out that way.

I discovered late last night that my overdue annual neurology appointment was scheduled for 9:30am today and not 9:30am tomorrow as I remembered. So, I called the MBTA and the reservationist snarkily informed me that "The Ride is not your personal taxi service, Ms. Baker" and that, because I did not provide 24 hours notice, I would be placed on standby.

I've been falling asleep at night listening to Sissy Spacek read To Kill A Mockingbird which means that I have to put my alarm on "buzzer" instead of NPR. This may seem like one of my typical digressions, but it's not. I love listening to the book at night but I hate what feels like a violent assault first thing in the morning. The high-pitched buzz, which is really more like a beep, seems to drill into my inner ear and come back out the other side. And this morning, it was even earlier that usual so I could find out if The Ride had scheduled my trip to the neurologist. No such luck.

I rolled with the punches, got myself and the kids ready for the day, and looked up the fastest route via public transportation on my smartphone. I usually avoid buses. This is slightly embarrassing to admit, but I think it's just that the train somehow seems cooler. I have no idea why...it just does. That having been said, I usually HATE taking the train to my neuro appointment because it takes an hour and a half and it involves the dreaded Green Line filled with overentitled 20-somethings who clump together in front of the doors and don't let anyone in or out of the train. I have actually come close to physically assaulting a woman when she gripped the handrail with her arm extended and wouldn't let anyone pass, although the conductor was screaming into the microphone that he couldn't leave the station until the doors were cleared. I politely said "excuse me" not one, but two times, and then decided to pry her fingers free of the pole. In retrospect, I probably crossed a line.

But I digress. Because Zane leaves for school at 8:30 and I had less than an hour to get to the neurology appointment, I decided to look for a faster route. And I found one! The trolley, the 31 bus, the 39 bus, and a short walk later, and I arrived at the neuro office with 5 minutes to spare and no assault charges waged against me.

When I filled out the usual check in forms, I realized that my plan was foiled to divulge my rebellion against the injectibles after Dr. S. gave me my most recent MRI results. Nevertheless, I completed the form honestly and wrote down the fact that I had stopped taking Copaxone in February. Yup. February.

When I was called in, Dr. S. reviewed my form and, perhaps not reading carefully inquired, "And you're on Copaxone...?"

Before he could check the box on his computer, I said, "No, actually....I stopped taking the Copaxone in February." And then I waited. For the roof to cave in, for the MS police to show up in riot gear and take me away, or, probably my worst fear, for Dr. S. to yell at me and not like me anymore.

But he didn't. He said, "Ok. Let's talk about that."

I think I love him...not just because he wears pastel shirts and would fit nicely under my chin, but because he listens. He is the neurologist I always wanted. He sees himself as a key player on MY MS team. I am the captain and he works for me. He makes recommendations but he ultimately leaves the treatment decision making up to me.

We talked at length about how I gave up gluten to help my Ulcertative Colitis and how I noticed MS symptoms (namely my vision and fatigue) improving. He was very interested in my experience and told me that he's writing a paper about the link between the gut and MS. He also suggested that, in addition to giving up gluten, I may want to add probiotics into my regiment since they had shown to help UC and MS.

We had the typical clinical neuro tests where I have to follow his finger, walk as fast as I can down the hall, stand on one foot, touch my finger to my nose, etc. We went over my MRIs, image by image, and I learned that I have no new lesions. There was one faint shadow at C4 but it didn't concern him in the least and he thought it might have been because I moved during the scan.

I was beside myself with joy. I vibrated in my chair, grinning from ear to ear. I was prepared to hear that the lesion making machine that is my immune system had gone a little nuts after I quit the Copaxone. I was prepared to be wrong about my decision to go off the meds So you can imagine how cool it was to have the medical professionals confirm, yet again, that I know my body and that I'm doing a good job listening to it.

Then we talked treatment. He told me about the current MS oral med, Gylena, and how the relapse reduction rate is almost double that of the injectibles. Did I say that right? People have less relapses on the drug. We talked about another oral med still waiting for FDA approval in the US that is currently approved for treating psoriasis in Germany and how it's been found to help people with MS. Dr. S. expects it to be approved in the next year.

Then, I identified three possible choices: 1. Start on another injectible, 2. take Gylena, or 3. continue to do no meds until the other oral med is approved. Dr. S. responded, "Well, choice #1 isn't really a choice, is it? You don't like the injectibles so they're off the table. They don't work for you if you won't take them."

I love him.

We decided....drum roll, please...

I am not going to take any MS meds (other than my Vitamin D and other OTC/vitamin nutritional supplements) for at least six months. At that time, I will have another MRI series and another appointment to check in on how I'm feeling. If all is still well, then I will continue as I'm going for at least another 6 months.

Barring him telling me that they discovered I no longer have MS, this is the best news ever. Nothing has really changed but now I am compliant, honest, healthy, AND med-free. As a gesture of gratitude, I donated 9 vials of my clean blood before I left the MS Center. It's rare to have people with MS who don't take meds and they can use it to research the causes of MS. One of the vials was for the CLIMB study that will follow me for 20 years. I told the 20-something office worker that if she still worked on the study in 20 years, she would be able to tell people: "Julie Baker is just as healthy and vibrant today as she was when I did the intake 20 years ago."

Out of Hybernation CCSVI Rant

noreply@blogger.com (Julie M. Baker) — Tue, 01 Nov 2011 22:36:00 +0000

I haven't done a lot of research about CCSVI but I have certainly been inundated with "testimonials" from believers in the MS community. I have to say that this is the first one that seems sane and balanced to me.

I'm glad that Montel Williams and others are getting relief from some of their symptoms with this procedure and I'm incredibly grateful that my symptoms are so minor that I would never consider surgery on my jugular vein...at least not yet. However, words like "miracle" and "liberation" scare the crap out of me and set off my bullshit meter.

For me, holistic is the way to go. Eastern medicine, western medicine, nutrition, meditation, yoga...whatever works. And if CCSVI works for you, that's fantastic but PLEASE don't tell everyone that it's the only answer and that they are fools for trying some of the other treatment options.

Let's keep supporting each other in our variety of approaches to living with MS and protecting each other from unscrupulous doctors who give false hope of "miracles" for the right price. Let's keep working/praying for a cure for MS.

World MS Day

noreply@blogger.com (Julie M. Baker) — Wed, 25 May 2011 22:49:00 +0000

Did you know that today is World MS Day? To me, this day is about sharing information and, hopefully, changing perceptions about the disease. If you have any questions about MS, drop me a line or write them in the comments section below. I may not know the answer but maybe another blog visitor will! If not, I'm happy to share my experience with you and try to point you to other resources to get more information.

A Potentially Offensive Brain Dump

noreply@blogger.com (Julie M. Baker) — Tue, 24 May 2011 22:14:00 +0000

What the hell. It's my blog and fear of offending people has never stopped me before. I'd like to think that my blog readers count on my brutal honesty. So here goes.

Sometimes I hate hearing about other people's MS symptoms. Sometimes I cringe when I learn that people I know with MS are struggling with walking, talking, and fatigue. Sometimes, I guiltily enjoy the fact that my MS is invisible. I never lie about my MS. My blog is public and I use my real name so I'm not denying it to myself, to you, or to the world, but still...

The reality is that people have their preconceived notions about MS and people with the diagnosis. They hear MS and automatically think of canes, walkers, and wheelchairs. To paraphrase Seinfeld: Not that there's anything wrong with that!

But there kind of is. It's like thinking that everyone who is gay speaks with a lisp or is a great decorator. Sometimes I think people are waiting for me to fall down, start slurring my words, or imagine that any day now I'm going to need an assistive device. Maybe they stay clear of me because they don't want to have to take care of me someday. I imagine that they think I'm just marking time until I get that purple polka dotted cane and go on disability.

I know, I know. What other people think of me is none of my business and I have not been gifted with mind-reading capabilities. But it bugs me.

Maybe I will end up with disabilities beyond my visual impairment but maybe I won't. After my diagnosis, I made huge changes in my life--reducing stress, changing my diet, meditating, writing, and more. I'd like to believe that those changes, combined with my positive attitude and the first-class medical treatment that I alternate taking advantage of and rebelling against, will prevent any progression and deterioration.

But maybe I'm full of shit. I have no control over most things, including my MS. Maybe it's not other people's prejudices that are pissing me off, but my own. Maybe I don't like to hear about MS symptoms because I'm still in denial (or vacationing there). Or maybe I'm just scared.

I'm Here, I'm Alive, I Still Have MS!

noreply@blogger.com (Julie M. Baker) — Sat, 07 May 2011 04:13:00 +0000

It's come to my attention that I haven't blogged in a while so I thought I'd check in briefly. Hi. My name is Julie and I still have MS. I'm still a single mom. I still work full time. I'm still editing my book. I'm still in recovery. I'm still meditating. I...

And, apparently, I've forgotten how to "save draft" rather than "publish" since I inadvertently and prematurely published that incomplete post. So, let's continue...

I still struggle with being a non-compliant patient. I still work hard (with varying degrees of success) to take care of myself. I am probably getting a solid C lately. If I'm going to the dentist, meditating daily, and getting enough sleep, chances are I'm eating too much sugar and/or not doing my recovery writing. If I'm being a rock star at work, I'm not getting enough sleep, or I'm completely abandoning my blog. The kids are probably the only area that I have any real consistency.

So I guess that means I'm still human.

More Tales from the Ride

noreply@blogger.com (Julie M. Baker) — Fri, 25 Feb 2011 02:40:00 +0000

There are things I like about The Ride. I like independently traveling to places that I can't reach via regular public transportation. OK. Apparently, there is just ONE thing I like about The Ride, but it's a pretty big thing.

I have a growing list of things that I do NOT like about The Ride. Here's a sampling:

The drivers insist on buckling me in even though I can do it all by myself. Hell. Zane can do it all by himself and he's only 7.
The drivers insist on walking me to the door, even though I qualify for The Ride because of a visual impairment and not a lack of motor function.
I do not know exactly when the driver will arrive and risk being categorized as a "no show" if I am not ready and waiting whenever he shows up. And I do mean "he" (see below).
All the drivers are men. What's up with that? Not all cabbies, train conductors, or bus drivers are men. Does The Ride hire women? If I was able to drive, I might even take that on as my personal mission the way I did at 15-years old when Consolidated Tobacco told me I couldn't be a picker because girls could only work in the sheds. The boy pickers made 20 more cents per hour than the girl sewers so I made a stink. By the end of the summer, this girl picked.
I am sometimes forced to ride in close proximity with angry people. Perhaps they need their own blog to vent what they don't like about The Ride. Case in point: Mr. Jones, the elderly blind man who scared the beejeezus out of my children on Saturday during their first outing on The Ride. There was a mix-up with the number of people traveling in his party, and when the driver asked him to wait inside the restaurant until it was straightened out, Mr. Jones repeatedly banged his folded up cane against the glass on the door and implied that I was a racist when I asked him to stop. I guess I found another good thing about The Ride since the entire experience solidified by desire to stay positive. I may be visually impaired but I refuse to be a bitter blind lady.

Book 'em, Danno

noreply@blogger.com (Julie M. Baker) — Thu, 13 Jan 2011 00:28:00 +0000

So I booked my first trip on The Ride. They were supposed to pick me up at my office after work tomorrow, take me to the mall, and then bring me home an hour later. But we had a pretty big snowstorm in the Boston area last night and school is canceled for a second day tomorrow which, of course, means I'm not going into the office.

I have to say, I'm kind of bummed. I haven't been to the mall on my own for more than 2 years now. I would have been racing around for an hour to find a dress for Ruby to wear to a Bat Mizvah party on Saturday, which is not exactly fun shopping, but still! She ended up borrowing a really pretty dress today so there is no pressing need for the mall trip. But it's booked. And I want to go.

Also, because I was getting picked up at work, I warned my boss about it since I didn't want him to get all pitying and ruin the way we joke about my visual impairment. He teased that he was charging the camcorder so he could videotape me climbing on board for the first time. I'm pretty sure it was an idle threat but I think it would be kind of cool to have visual documentation for the blog.

With or without video, I was really hoping to have a funny story or two to share after the big adventure on my chauffeur-driven short bus. Do I call and cancel or just rearrange and go to the mall after their dad picks them up for dinner?

My New Ride

noreply@blogger.com (Julie M. Baker) — Fri, 10 Dec 2010 03:20:00 +0000

I opened a big envelope earlier today and read that the MBTA said "yes" to my application for The Ride. According to their large-print handbook that accompanied the certification letter, "The Ride is [the MBTA's] paratransit program, which provides door-to-door public transportation to eligible people...who cannot use public transportation, all or some of the time, because of a physical, cognitive or mental disability."

I have optic nerve damage and vision loss as the result of my MS. I don't walk with a red-tipped cane, have a seeing-eye dog, or read Braille but I do have low vision and I no longer drive. I take regular public transportation almost everywhere that it goes but it doesn't go everywhere that I want to go. And, depending on my destination, I sometimes have to take a trolley, a bus, and a train for an hour and a half to get somewhere that's only a 30-minute drive away. I get a lot of rides from my wonderful friends and neighbors, but it's nice to go places by myself and on my own schedule sometimes.

In spite of all these no-brainer reasons for The Ride, I waited about a year after I stopped driving to ask my neurologist to sign the application, and then I waited another year to mail it in. I had a whole lot of excuses but only one real reason. Pride. I didn't want to be someone who needed The Ride.

And, I have to say, I still don't. And it's still all about pride. What will the other riders will think of me? ("Why the heck is this able-bodied woman scamming a seat on The Ride?") What about the neighbors? ("Oh! Julie must be going down the tubes with her MS. Poor thing!"). What happens if I flirt with a handsome man in Ikea and he walks me outside and is about to ask for my number when my short bus pulls up?

I'm thinking that, for my inaugural trip, I should pick a place to go all by myself that I couldn't get to on the train. It should be something fun and not something absolutely necessary like a doctor's appointment. Maybe I'll go to Ikea (to troll for cute men who don't have anything against visually-impaired people) or to the DeCordova Museum.

Or maybe, I'll stare at the certification letter for another year.

Fashion Plates 2010 Fashion Show

noreply@blogger.com (Julie M. Baker) — Mon, 06 Dec 2010 23:00:00 +0000

Partner as Caregiver?

noreply@blogger.com (Julie M. Baker) — Mon, 06 Dec 2010 04:02:00 +0000

I've been thinking about my last serious boyfriend lately. I think it's just because of the holidays approaching which make me think about people that are no longer with me. Because we broke up less than two weeks before my dad died, the grief of those two events is forever melded together in my mind. So, Christmas is coming, I'm missing my dad, and then I start missing him a little, too.

On bad days, I remember myself as the victim who was heartbroken after the relationship ended against my will. Awwww. Poor me. Except that's not true. The truth is that I started being honest with myself about what I wanted in a relationship and when I shared that with my ex, we realized that we weren't in the same place and didn't want the same things. I wanted to move forward and he was happy with things they way they were. So, it ended. I'm pretty sure that if I had been content, things would still be going along the same way two years later without any further commitment. Except that that wasn't what I wanted. And, you know what? It's STILL not what I want. Although I miss being in love, I don't miss settling for less. I don't miss silencing my inner voice just to avoid being alone.

I was talking about all this with a friend this weekend and she asked me if I thought MS had anything to do with our break-up. Although the issue was never raised, it's hard to say whether or not MS was a factor. Because I have MS, it's impossible to know if things would have been different without the MS. I've never managed to find a crystal ball that shows me the parallel universe where my life is not exactly as it is in this world. When I met my ex, I didn't have MS. We had been dating exclusively for almost two years at the point that I was diagnosed and then we dated for another year and half before we broke up. Who knows? Not me.

So, I told my friend honestly that I didn't know, but that it didn't really matter because I am who I am and part of who I am is someone with MS. Love me and accept the MS.. Her response was like a punch in the gut. She said, "Maybe he couldn't commit to being your partner because he worried about being your caregiver in the future."

I don't blame my friend for her brutal honesty. I had thought something similar myself but I never said or heard it outloud before. But there it is.

And because it's the time of year that I have to work extra hard at RSVPing "no" to every possible self-pity party, my mind started to race: "Oh my God! I'm going to be alone forever!;" "No one is going to want me;" etc, etc, etc.

SCRRRRRREEEEEEEECH. Thankfully, I put the breaks on that little trip to nowhere lickety, split. Here's the pep talk I gave myself to get back on track:

I don't need a caregiver today. I care for myself. Anyone that I'm with could be the one to end up needing a caregiver. My MS might bring that possibility to the forefront, but isn't that a possibility in any relationship? Isn't that part of the risk of spending your life with someone and growing old together? Most people don't age without issues. I have Multiple Sclerosis and Ulcerative Colitis, but I'm a pretty healthy 46-year old woman in every other respect. I don't drink, smoke, do drugs, I meditate, eat healthy, have loving relationships, and I stay relatively active.

Maybe I'm in denial but I don't think it makes sense to plan my life around potential disability. Am I crazy? I mean, yes, I have MS, but I've had it for three years and I feel great. My vision issues are real and have taken away my ability to drive, but even if it gets worse, there are plenty of completely blind people who don't need caretakers.

So, the pep talk worked. I've back on my track of gratitude, trusting that, with a higher power that lives inside me, I will never truly be alone and that I will be ok, no matter what.

Shattered Confidence

noreply@blogger.com (Julie M. Baker) — Sun, 21 Nov 2010 01:02:00 +0000

I just dropped a full jar of jelly on the kitchen floor. These are the things I thought about as I cleaned up the sticky purple goo-covered shards of glass:

Is it MS?
People without MS also drop things on the floor.
Now I have no jelly for my toast.
Am I extra clumsy because I had the fashion show yesterday and then stayed out dancing until after midnight last night with no nap in between?
Is it the effects of the sugar in the Halloween candy I stole from my children earlier today?
Is it MS?

Good Seats Still Available!

noreply@blogger.com (Julie M. Baker) — Fri, 12 Nov 2010 22:56:00 +0000

Fashion Plates
Real women , real stories…all for a good cause!

Please join us at

“Fashion Plates”
A Luncheon and Fashion Show
to benefit the Greater New England Chapter of the
National Multiple Sclerosis Society

Treat yourself to an enjoyable afternoon of food , fashion and fun!

Join us on
Friday , November 19 , 2010
11:30AM - 1:30PM

Sheraton Boston Hotel
Grand Ballroom
Boston , Massachusetts

Individual Seat: $ 100
Tables of 10 Seats: $1 , 000

To purchase tickets , tables , or raffle tickets , please view the event website.
For sponsorship opportunities , please contact Kara Kelley or call 781-693-5129.

Presented by:
Ports & Company
and
Sheraton Boston Hotel

National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue , Suite 6
Waltham , MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org

More Than Just Pretty Faces

noreply@blogger.com (Julie M. Baker) — Thu, 21 Oct 2010 05:02:00 +0000


2009 Fashion Plates Fashion Show

Next month, I'll be walking the runway for the MS Society's Fashion Plates fundraiser for the third consecutive year. In the past, I've gone for the clothes selection with the personal shopper and then showed up the day of the fashion show to have my hair and makeup done by a team of professionals. Not too shabby for a suburban mom who shops at T.J. Maxx and gets her makeup at the drug store.

This year, I decided to help with the event planning, too, and I volunteered to interview my fellow models for the program bios. What a treat!

Each woman I've interviewed has a different diagnosis story and their disease symptoms and treatments vary considerably. I've heard it said more than once that if you put 100 people with MS in a room, they would have 100 different tales to tell. That's certainly been the case for the four women I've talked to so far.

Some had symptoms for years before they were diagnosed and some have similar stories to mine where they went through a whirlwind of specialists and tests that ended with an MS diagnosis just days after presenting with a single issue. I know we get what we get and no one's able to choose how or when they are diagnosed, but I'm incredibly grateful that I'm in the latter group. If I had been visiting doctors for years wondering if I was imagining a list of unrelated symptoms, I might have ended up in a padded room. Or maybe that's just further evidence of my questionable mental state. That's OK. I'm the fun kind of crazy.

But I digress.

For all the differences, I found common themes in these women's stories, too. Maybe it's the kind of person attracted to this event. I guess you have to feel pretty good about yourself--and life, in general--to strut down a runway. Or at least not give a crap about what other people think.

Every woman I interviewed was incredibly positive. When I asked how MS had changed their lives, they each talked about the unexpected gifts they found inside the ugly wrapping paper of MS. I heard about how their priorities shifted after diagnosis and how they now appreciate what they have so much more. Although MS is not a fatal illness (don't get me started on that misconception!), it's made each of these women realize in a new way that the future is uncertain and how important it is to focus on the present.

Without exception, and regardless of their level of disability, everyone wanted me to know that they were not defined by their MS. Like me, they are multi-dimensional people who live fully now and are more active and involved in life than many people who don't have a chronic illness.

I am proud to be in their company. I hope people living in the Boston area (or people who want to visit the Boston area) will consider attending this inspiring event on Friday, November 19.

Taken by Mouth

noreply@blogger.com (Julie M. Baker) — Fri, 24 Sep 2010 02:37:00 +0000

The FDA has, at last, approved a new, oral drug to treat MS. This is thrilling news for those of us who do not particularly enjoy daily or even weekly self-injections. I know this medication might not be right for you or for me--I plan to discuss it with my neurologist at my next appointment. Either way, I think this is the first of many oral options that will be available to us so it's worth celebrating.

The NY Times article is here.
Or, check out the Wall Street Journal's Health Blog.

I Pity the Fool Who Pities Me!

noreply@blogger.com (Julie M. Baker) — Wed, 15 Sep 2010 02:21:00 +0000

I just found out about a Make A Wish type program for people with MS. Did I miss something? Did the four neurologists I've seen since I was diagnosed with Multiple Sclerosis forget to tell me that I'm dying? Did I somehow, in my three years of research about my disease, miss the part about it being fatal?

So, why in the world would the fact that I have MS qualify me for a free vacation? I am many things but I am not pitiable. If you want to send me on a vacation because I'm clever or otherwise worthy...awesome...but because I have MS???!!!! . I think it's cool that they are also offering power wheelchairs but the vacation piece baffles and offends me.

Maybe I'm missing the boat--literally as well, as figuratively. Maybe I should jump on any opportunity to capitalize on my status as a person with a diagnosed, incurable (so far), chronic illness. Naaaaaaa. Call me crazy, but I think it's more important to change perceptions. It's programs like this one that inspire others to give me the head tilt, arm squeeze, and puppy dog, teary-eyed reaction I love so much when they find out I have MS. I'd rather save my own money or have a stay-cation than perpetuate the belief that an MS diagnosis is as sad or tragic as a child with leukemia. That is tragic. That is sad. MS is not. It simply is what it is. It sucks sometimes, and some of us are or will be disabled by the disease, but we are not dying. But wait...let me speak for myself. I am not dying. I am not dying of MS and, actually, I don't even plan to die with MS.

I consider myself fortunate. I was not diagnosed with stage four ovarian cancer. I would guess that if I was, I would be thrilled to learn that all I had to do to stay alive would be to give myself a shot every day and pay attention to things like nutrition, stress, sleep, etc. that are things everyone should pay attention to anyway.

No one wants MS. But you know what? If we all put our problems into the center of the room and were magically allowed to really see what it was like to live with everybody's various stuff before taking something back out, I bet we'd all end up taking our own crap home with us.

MS has changed me and my whole life, but it's not all bad. In fact, most of it is really, really good. Yes, you heard me say it...again. I get grief from others with MS every time I say that but it doesn't make it any less true for me. Some people tell me that I'm just one of the rare, lucky ones and that I do not know what their pain is like. That may be true. AND...I do know what it's like to lose the vision in one eye due to MS-related vision issues and the resulting optic nerve damage. I know what it's like to have my vision deteriorate to the point when I can no longer drive and sometimes have trouble picking out my own children in a crowd. I know what it's like to experience fatigue. I know how scary it can be to experience a new, temporary symptom like numb feet and not know whether it's the start of something permanent. I know how scary it can be to go into the neurologist's office to get the results of my latest MRI series, not knowing whether or not the shots I hate giving myself so much every single day are working and stopping the progression of the disease. In other words, I have just as much right to my feelings as anyone. I qualify. I've paid my dues. I have MS. And for me, it's a blessing wrapped in a crap-encrusted curse.

I've learned how to take care of myself in a way that I never did or would have otherwise. I've learned how to prioritize. I've accepted that rest is a perfectly valid activity. I realize that there are only 24 hours in a day and it is no longer my goal to stay busy for as many of those hours as humanly possible. I've finally, finally, finally learned how to ask for help and accept it when it's offered. I've started to learn the importance of balance. Most days, I live in the present. Most days, I listen to the voice in my heart and tell myself the truth. I've learned to stick up for myself even when it's scary and people don't like it. I've learned how to bitch and whine and vent and then let it go and focus on all the wonderful things that the Universe brings me every single day. MS has made all of that possible for me.

I don't need a wish and I don't need a free, pity vacation. And just for today, I don't need a power wheelchair either but I hope that someone who does need one, gets a really snazzy one with a horn that plays I Will Survive.

Wise Words by Others

noreply@blogger.com (Julie M. Baker) — Mon, 13 Sep 2010 02:30:00 +0000

Random quotes about illness:

"The..patient should be made to understand that he or she must take charge of his own life. Don't take your body to the doctor as if he were a repair shop." ~Quentin Regestein

"Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." ~Susan Sontag, Illness as Metaphor, 1977

"If I had my way I'd make health catching instead of disease." ~Robert Ingersoll

"Physical ills are the taxes laid upon this wretched life; some are taxed higher, and some lower, but all pay something." ~Lord Chesterfield

"To feel keenly the poetry of a morning's roses, one has to have just escaped from the claws of this vulture which we call sickness." ~Henri Frederic Amiel

"The I in illness is isolation, and the crucial letters in wellness are we." ~Author unknown, as quoted in Mimi Guarneri, The Heart Speaks: A Cardiologist Reveals the Secret Language of Healing

"Illness is the most heeded of doctors: to goodness and wisdom we only make promises; pain we obey." ~Marcel Proust

"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948

"Diseases of the soul are more dangerous and more numerous than those of the body." ~Cicero

"An imaginary ailment is worse than a disease." ~Yiddish Proverb

"Every man's disease is his personal property." ~Alonzo Clark

"When an illness knocks you on your ass, you should stay and relax for a while before trying to get back up." ~Terri Guillemets

"The most important thing in illness is never to lose heart." ~Nikolai Lenin

Fashion Show Interview

noreply@blogger.com (Julie M. Baker) — Wed, 08 Sep 2010 01:28:00 +0000

I'm about to be interviewed for the program blurb they will include about me as one of models for the MS Society Fashion Plates Fashion Show. Should I think of myself as a beauty pageant contestant and ramble on about wanting world peace? Or maybe I can pull a Sarah Palin and use it as an opportunity to gather printed evidence of my lack of geographic knowledge? Actually, I'm just hoping I can stay awake. I'm a bit wiped out. It's not MS fatigue or anything but the day after a late to bed night and Day Two of the diminished prednisone dose. So, I'm going to just try not to yawn and hope that I form complete sentences.