Money Matters

I am not what you would call financially mature. I'm trying to be, but I'm kind of a late starter.

I got my first checking account at 18 and never learned to balance it. As a result, I quickly learned how something paper that represents something paper can actually bounce and how, although that may sound fun, it's not. I got my first credit cards at the same age and watched each and every one of them get cut up at cash registers by the time I was 22. That was definitely not fun.

I moved in with my ex when I was only 24 and, since he was a lot better at managing money than me, I let him. Don't get me wrong, I still paid for half of everything even when I made less than half of what he made. That was our arrangement..until several months after our daughter was born when I refused to keep splitting the cost of diapers 50/50. And, no, I'm not exaggerating.

With the help of his bullying me to pay bills on time, I managed to reestablish my credit, which I then destroyed all over again when we parted.  After we split up seven plus years ago, I suddenly had to pay bills, establish and stick to a budget (or not and suffer the consequences), and balance a checkbook (or not, and suffer the consequences). I suffered a lot of consequences including late fees, bank charges, canceled policies, and the embarrassment of bounced checks and calls from creditors.

I can't blame my parents for not teaching me about money. I'm an adult now and my dad, who is the only parent I've had in my life for 20+ years, is now gone. I don't think it's part of a dead parent's duties to teach his 40-something kid about managing money from the beyond, do you? Nor can I blame my ex for enabling my immaturity with money matters and taking over finances. We're no longer married and my finances are my responsibility.

Nope. I will no longer play the blame game because I never win. Instead, I will put on my big girl shoes and be a financial grown-up...or fake it until I make it. To that end, I've created a budget with my rudimentary Excel knowledge and, for the most part, I'm sticking to it. I'm not perfect but it's not as bad as it used to be. I've occasionally run out of money between paychecks, but I realize it (usually before checks bounce) and immediately stop spending money I don't have. I have been known to cancel babysitters for nights out and take my last $50 to the grocery store and make my Lithuanian great-grandmother proud with my frugal food planning for a solid week until the next paycheck arrives. That may sound like no big deal, but trust me, it's huge for me. I don't expect pats on the back but I do give myself high-fives for finally doing what I should have been doing all along.

I also believe that it's my job, while they are young, to help my kids learn about how much things cost and how to make good choices with money. For starters, I give them allowance for doing certain chores and, they have to put a portion of that allowance into long-term savings, and donate a portion to charity. This doesn't always go over well ("Why can't the charity be ME?" and "But I want to spend the money NOW!"), but I stick to my guns. When they ask to buy something that is not a necessity and it's not Christmas or birthday-time, I let them know how much it costs and suggest they use their own money to buy it. I don't want them to believe that money grows on trees that they do not plant or water.

I know that I am very, very fortunate. I have health insurance, I earn a living wage, I have a roof over my head, and there is food in the cupboards. I sometimes worry about the future with money. What if I get sick and can't work? Will I ever be able to retire? I used to have a retirement account but I took most off it out to fend off creditors after my divorce and paid a fortune in tax penalties for the temporary bandaid.

But you know what? Just for today, I am doing what I'm supposed to be doing. Just for today, I'm healthy and can work full-time at a job that pays the bills. Just for today, I know that if I trust myself and the Universe, all will be well and I will have what I need when I need it.

How about you? Do you manage money well? Do you worry about future finances?

Spin Me Right Round, Baby, Right Round

The next time I smell BO on the bus or train, I will not assume that the person is homeless. Perhaps, like me, they were traveling home from a particularly strenuous spin class.

Just in case you've never heard of spin, here's my Cliff Notes' description.  It's a group class filled with people on stationary bikes. The teacher plays really loud music with a strong beat and has you climb hills (standing up with your butt out of the seat) and do sprints where you pedal really fast (like 30 miles per hour). I sweat...a lot.

Just in case that made no sense, here's a video from a gym that looks a little fancier than the Y where I take spin:



I've only been doing spin for a few weeks now and I absolutely love it...and not just when it's over. I actually enjoy it while it's happening and find myself smiling while I'm sweating like a pig and listening to my gluteus maximus and hamstring muscles scream.

On my own, I'm not very good at pushing myself to my maximum ability, but somehow it comes easily with spin. I want to keep going. I want to keep my butt out of my seat for the entire three-minute song. I try to go a couple times per week and I try to push myself with harder gears and higher RPMs each time. And every time I go, I work really hard which makes me feel incredible.

I feel like a superstar when the one-hour class is over, like I won the Tour de France...ok, maybe like I finished the Tour de France. Unfortunately, no one told the people at the YMCA reception desk that they should give me a ticker tape parade as I head out to catch the bus home and offend my fellow passengers with my sweaty odor. That's ok. I applaud myself.

A True Ride Adventure

The Ride supplied a plethora of blog fodder yesterday.

I had a meeting with an outside vendor so it was an office day. As usual, I rode in with a colleague/neighbor and ordered The Ride for the way home. Except I wasn't going home. A gluten-free friend was recently hospitalized on pregnancy bed rest and I decided to bring her some treats from All Can Eat, my favorite gluten-free bakery. (I was hospitalized for more than a month waiting for Zane to be born, so I have a soft spot in my heart for any woman in the same situation.)

The day before, I ordered The Ride to pick me up at work at 5pm and take me to the hospital in Boston. Then, I ordered The Ride to pick me up at the hospital at 7pm and take me home to meet the kids who would be dropped off by their dad at 7:30. I mention the specific times for a reason. I would have gladly scheduled The Ride to pick me up at the hospital at 6:30pm so I could have a cushion of time before the kids got home, but I wasn't allowed to. You see, The Ride makes you wait at least two hours from the time of the first Ride until the time of the second. "The Ride is not your personal taxi service, Ms. Baker" is what I hear every time I try to get an earlier pick-up.

When the automated message I received yesterday morning told me that my Ride times were 5:06 and 7:28, I thought, "Oh shit" and immediately called my ex. I left a voicemail message, letting him know that, due to the timing of The Ride, I wouldn't be home until closer to 8pm. I apologized and told him that he should drop off the kids at 8pm instead of 7:30. I knew it wouldn't go over well, but I didn't have a choice.

So, at 5pm, I packed up my bag at work and went outside to wait for The Ride, hoping against hope that it wouldn't be the short bus. It was. All the seats were folded up for wheechairs except one bench seat near the back. I was the only one on the bus. As per usual, the driver did a 12-point turn in the parking lot, making sure that every co-worker heard the back-up signal. BEEP-BEEP-BEEP!

And then the real fun began. My driver, who never introduced himself, was apparently a frustrated race car driver. Or maybe a clown in search of a small vehicle filled with his friends. While blaring hits from the 80s on the radio, he alternated revving the engine and then slamming on the brakes. He swerved and suddenly switched lanes on the highway with no warning based on the horn beeps I heard from other drivers. My backpack fell off the seat next to me and I thought I was going to throw up.

It was pitch black outside and I was traveling a route I had never taken while I was driving, so I had absolutely no idea where I was. Every time I thought I had my bearings, I was wrong. I started texting a friend just to distract me from my nausea. She called me and stayed on the phone with me, making me laugh for the rest of the wild ride. 

I could have gotten the driver's name and filed a complaint...but I didn't. I could have yelled "slow the fu&% down!"...but I didn't. Instead, when we pulled up in front of the hospital, I hurried out of the bus and breathed deeply, grateful that I didn't have to watch my vomit roll up and down the floor of the short bus.

I hate The Ride.

I visited my friend and came outside at 7pm, just in case The Ride came early. At about 7:25, I called the automated "Where's My Ride?" system and the recording told me that my Ride was 13-18 minutes away. Again, I thought, "Oh shit" and called my ex. Again, I got his voicemail. Again, I apologized. I also texted him and my daughter, letting them know that The Ride was running late and that I might not be home until after 8pm.

I was right. The delay, especially the second one, did not go over well. My daughter texted me back words that her father had obviously told her to write, including the fact that I was inconsiderate and he had to wake up at 3:30am. I called him again to explain and to ask that he not have my daughter text me his words. He proceeded to interrupt me and talk over me, until I was holding the phone away from my ear to avoid the pain of his yelling. I told him several times that if he continued to yell at me I would hang up the phone. He continued and I hung up.

When The Ride showed up about 7:50pm, I got in the backseat and listened to a fellow Ride passenger and my driver speak in Spanish. I know un poquito Espanol (but not well enough to find the correct symbol for typing). It calmed me down. When the driver, Alton, dropped off Margarita, I wished her "buenos noche" and got into the front seat.

Alton reminded me that he had driven me and the kids before. We started talking about children and I told him that I was going home to meet mine. I mentioned that my ex was pretty pissed off about me being late and ended up telling Alton the whole story of my afternoon and evening. He was a great listener. When we got close to my house, Alton said that he would walk me to the door so my ex wouldn't give me any grief. I wasn't afraid of him physically confronting me, but I knew that he wouldn't be rude or mean in front of someone else. My ex hates having anyone else think he's not a nice guy.

When we pulled up in front of the house, Alton walked me to the door and engaged my ex in conversation, apologizing profusely for being late. He kept saying, "Oh man! It's all my fault! So sorry for keeping you guys waiting!" He kept on saying it over and over. As I closed the front door, I saw Alton shake the ex's hand and the ex smiled.

It was awesome. I LOVE The Ride.

Erasing the Evils of Envy

Do you every experience envy? I'd like to say I'm immune but that would be a lie. Sometimes, I don't feel quite as sweet on the inside as I act on the outside. Sometimes, I compare my insides to other people's outsides and come up short.

Envy is not a nice feeling. It actually feels like crap. I did a search for quotes about "envy" and that was the consensus.

The envious die not once, but as oft as the envied win applause. 

~Baltasar Gracian

If malice or envy were tangible and had a shape, it would be the shape of a boomerang.  ~Charley Reese 

Love looks through a telescope; envy, through a microscope. 

~Josh Billings 

Envy is thin because it bites but never eats. 

~Spanish Proverb

Our envy always lasts longer than the happiness of those we envy. 

~François Duc de La Rochefoucauld

Envy is ignorance.  ~Ralph Waldo Emerson

Pity is for the living, envy is for the dead.  ~Mark Twain

Envy is a symptom of lack of appreciation of our own uniqueness and self worth.  Each of us has something to give that no one else has. 

~Elizabeth O'Connor

My antidote for envy is simple: Thank the Universe for all that I have an all that I am. My gratitude list is long but sometimes I have to force myself to make it. Here's my ABC gratitude list for today:


A. AA for changing my life and continuing to help me grow toward being my best self.
B. My boss, who is a reasonable and respectful human being.
C. Clothes on my back...and then some
D. My doctors--the GP who took my presenting MS symptom more seriously than I did and my neurologist who treats me like the captain of my own treatment team.
E. My employer that lets me work from home most of the time.
F. My fabulous friends who have been my family.
G. The knowledge that I am sensitive to gluten and that I feel much, much better living gluten-free.
H. My home.
I. My imagination that keeps my life interesting.
J. Julie. My name. I've always loved it and I've never wanted to change it.
K. The Kindle Fire I bought myself for Christmas. It's wonderful to have a large print option for any book at all.
L. Love....and a laundry room
M. My MS diagnosis and all the gifts that it's given me, including a commitment to my mental, physical, and spiritual health.
N. No drama.
O. My One Day at a Time philosophy.
P. A regular paycheck that pays all my bills.
Q. The quilts on our beds and the fact that my children and I sleep in warm beds every night.
R. Ruby and my growing appreciation of what an amazing person she is.
S. Spin class which I'm starting to really love.
T. The Ride.
U. My UU church community. They are my village.
V. The old Volvo that I gave up driving and donated to charity. I'm grateful that I loved it when I bought it for $1500 and then accepted I needed to give it up because I don't see well enough to drive anymore.
W. Writing,
X. X-rays. Ok. MRIs aren't exactly X-rays but they are close...kinda. I'm grateful that I have health insurance to pay for this important diagnostic tool.
Y. The YMCA and, of course, you, because you read what I write.
Z. Zane and how he giggles in his sleep and offers me a hug when he senses that I'm having a hard time.


How do you fend off envy?

Tales of Woe on The Ride

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?

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

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

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

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

Nuf said...for now.

Happy New Year

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.

1. Play with the kids more. Zane's new foosball table will help.
2. Pray, meditate, and do my spiritual/12 step writing every day, even if it's just a few minutes.
3. Blog more.
4. 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!
5. Keep finding new ways to move my body. Last week, it was Zumba and spin class. Who knows what this week will bring!
6. Surround myself with people who are kind and make space in their lives for me.
7. Let go of the mean/sad stuff.
8. Keep eating more healthy than not.
9. Help more.
10. Take more baths. Bonus if I use the expensive bath oil Christina bought me in England.
11. Walk outside all year long.
12. Do more yoga, even if it's just sun salutations in the morning.

Website Wisdom

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:

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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.
11. 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.
12. 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.
13. 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.
14. 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.
15. 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.
16. 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?”
17. 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.
18. 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.
19. Stop letting others bring you down to their level. – Refuse to lower your standards to accommodate those who refuse to raise theirs.
20. 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.
21. 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.
22. 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.
23. Stop trying to make things perfect. – The real world doesn’t reward perfectionists, it rewards people who get things done.  Read Getting Things Done.
24. 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.
25. 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.
26. 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.
27. 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.
28. 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.
29. 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.
30. 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?

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!

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

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

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.