Thursday, January 31, 2008

Lost is Found!

I feel like I just ate a bag of jelly beans, drank a shot of peppermint schnapps, smoked a Marlboro, or better yet, a joint, was in the front row at a Counting Crows concert, or had a really, really earth-shattering orgasm. Except for the last two, I don't do those things anymore. BUT, I did just watch the season premiere of Lost and it was like a legal high.
Jack, Kate, Sawyer, Hurley, and Sayid are back!!!!!!!!!!!!! Oh, how I've missed the island and all its weirdness. I used to fear the perception of silliness or a lack of intelligence by admitting to my love of particular television shows. No more! I am flying my I LOVE LOST flag high! I do, however, feel a little like I'm crossing a picket line if non-union writers are writing the show while the screenwriters are on strike. I think I'm gong to bury my head in the sand and think of Lost like chicken. As long as I don't see them break the bird's neck and pluck out its feathers, it sure tastes yummy.

I Got a C+ on Sleep Hygiene Last Night

I stopped writing in my blog before 9:00pm last night and thought all was well. Zane was asleep, Ruby was in bed, I went down to the laundry room to put my last loads in the dryer. When I came back upstairs all he** broke loose. Zane was awake and giggling uncontrollably. I mean, laying there, eyes open, laughing like he just heard the funniest joke ever. This, of course, got Ruby going and then they just kept setting each other off. Zane needed potty then water then more potty because of the water. Ruby caught on and started requesting potty and water, too.

I didn't yell...exactly...but I did snatch the water glass from Zane's hand and kept muttering through gritted teeth, "This is MY time." It didn't help that there was a Lost special on TV with clues, background, etc. leading up to the season premiere tonight. I DARE they.

So, Ruby had to be moved to my bed and was still in there with Zane awake in their room, when I was supposed to be in bed at 10pm. At 10:30, Zane was still awake but significantly calmer so I woke Ruby up and brought her into her own bed. At some point, he tired himself out. I turned the TV off at 11pm but was too aggravated to fall asleep until about 11:30.

I have absolutely no recollection of the alarm going off at 6:45 a.m. today. I got out of bed around 8:00 a.m. and woke the kids up. According to my schedule, I am supposed to be to work by 10:00 a.m. on Tuesdays and Thursdays, which requires me to leave the house by 8:30. It was more like 8:45 which means I got to work about 10:15...not a good thing after a bad review when, at this stage in my professional career, I am expected to account for my scheduled and actual hours on a weekly basis. I am, however, giving myself a hearty pat on the back for not screaming bloody murder at the kids this morning. That does not mean that I was not thinking mean mommy thoughts.

I'm trying to figure out what I can do differently tonight. Tomorrow is Friday and I work from home in the afternoon, so the whole getting ready thing is a lot easier. I do have an appointment to see and apartment right after Ruby's school begins, so we can't lounge around forever. The kids don't usually come home until 7:15-7:30 p.m. on Thursdays when John drops them off. I am going to leave him a message and ask him to drop them between 6:45 and 7:00 p.m. so we can get a start on our bedtime routine. Hopefully, he will not be a jerk about it and will not fill them up on sugar or crack or whatever gets them so riled up when they come home from his house.

Wednesday, January 30, 2008

I'm really not that bright.

I must be some kind of a**hole. I know, like I know my name, that when my "sleep hygiene" sucks, so does my mood and my MS. But then, I stay up until 12:30 a.m. (like I did last night) when I have an 8:30 a.m. appointment the next day and go to bed without picking out the kids' clothes or packing lunches. Then, I snooze for 90 minutes and finallly get up at 8am because my body doesn't care that I think I can get by on 6 hours. I end up rushing around like a headless chicken, wondering why my kids can't get dressed, eat breakfast, brush teeth, and get out of the house in 15 minutes. I was an ugly, mean mommy this morning. The ugliest and the meanest. I think I should get a prize or something. I was, of course, late for my (obviously) much-needed counseling appointment. And, now, at the end of a physically taxing day working from home on the couch, my legs and hips feel like I ran a marathon. And just when I was feeling so close to normal, too. FU&%.

So, I've decided that, although I find routine boring, the reality of my life, as a single mom with MS, is that I need one. Badly. I need to make a schedule and stick to it. So far so good tonight. I made lunches after dinner, had the kids pick out their own clothes, gave them baths, got Zane in bed, picked out my own clothes, and packed my own lunch. Now, I'm waiting for Ruby to finish her homework so I can read to her and send her to bed by 8pm. Then, I'm going to stay on the computer until 10pm and no later, get in my jammies, and go to bed to read and/or watch TV until 11pm and no later and set the alarm for 6:30 a.m.

Ruby's ready. .

I'm back. My pre-sleep routine is continuing. Ruby is in bed. Zane is asleep and I am relaxing on the couch with the mail and my laptop. I'm going to work on my article for a bit then put on my jammies. Who says routine is boring? You know what's boring? Blindness, electric shocks up my spine, pain, random tingling, headaches, mind-numbing fatigue, and IV steroid infusions. That is very, very boring and I need to do what is in my power to prevent the symptoms from returning in full force.

Tuesday, January 29, 2008

I'm Carrie Bradshaw with Payless Shoes!!!!!!!

If I could be any fictional character on television, it would be Carrie Bradshaw, professional relationship/sex columnist for a NYC newspaper and amateur fashionista on Sex and the City. I wouldn't necessarily want to look like Sarah Jessica Parker (physically, we could not be more different and still both be female humans) but I do want her wardrobe. She wears shoes (Manolo Blahniks) that cost enough to feed a small village, or at least my kids for a month. Seriously. I just looked up a pair of strappy sandals from their Spring Collection and they are $665.

Aside from the whole, hip, happening, New York City-style, I envy Carrie because she is a published, paid writer with a weekly gig. She smokes guilt-free (I quit 10 years ago) and her photo is on the side of a God Damn New York City Bus! She dates a man named Big who treats her like crap but eventually she gets the Paris of all places. She has no children which I would never ever want to give up. But, I do think I would trade places with her for a week...or two.

But I digress. On to my big news. Are you sitting down? Have you already emptied your bladder?!!!

I sent a link to my blog to the editor of Lola Boston, a new monthly magazine published and distributed by The Boston Globe. Yesterday, I received an email from the editor saying that she loved my humor and wants me to write an article about my MS diagnosis and me for the March issue!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She likes how funny and irreverent I write and wants it basically to be a long blog entry describing who I was before diagnosis, what the diagnosis was like, how it's changed me, etc. It's for the True Story section which features stories of women facing various challenges in life. It's definitely NOT Ladies Home Journal "inspirational, rising-above it all" sappy crap. (Not that I would say NO to Ladies home Journal if they asked me to write some sappy crap for them.)The editor said she wants something authentic and gritty. I'm authentic and gritty!

So pinch me I'm dreaming. I love to write about me, my experiences, my feelings, my opinions, my crazy thoughts, etc. and now someone is going to pay me to write about what I'm writing about anyway and it's going to be read by thousands of people.

I love, love, love my MS today. I once thought I had to wait until I could write really well to write actual stuff. That is so not true! I just had to get diagnosed with an incurable, progressive, unpredictable neurological disease that would compel me to write every day. Writers write. I am a writer.

Saturday, January 26, 2008


Ruby made me promise I wouldn't call anyone to tell them about her boyfriend. Technically, I did not break my promise. I WROTE about Richie but I didn't CALL anyone. So, in a court of law I would probably get off on a technicality. That having been said...I feel guilty. No one can tell Ruby that I spilled the beans. Mums the word. If she reads the book one day, hopefully she will think it's cute and forgive me. Or not.

A friend of mine read the Richie blog post and told me that her mom used to write about her in letters to the editor and it embarrassed her to no end. Uh-oh. Have I become her mother? Have I become MY mother?

When I was 15 years old my dad kicked me out and I went to live with my mother for the rest of high school. During those years, Mom was "finding herself" as a new divorcee and doing what I thought was a lot of pretty weird sh&%. Clog dancing, clowning, putting personal ads in the paper, etc. Her clown name was "Sunshine" and she wore a tutu and did cheerleading at sporting events at the elementary school where she taught. (I seriously could not make this sh&% up!)

Some of my friends thought the clowning was cool (ya--because it wasn't THEIR mother!). One day, my friend Lynn Czerwinski (who died of an OD a couple years ago) either told my mom she wanted to see the clown costume or my mother offered to show her--I can't remember which and it doesn't really matter. One night, during my junior or senior year of high school, Lynn and some boys were coming over to pick me up to go to the movies, I think. I'm not sure if it was a double date or just hanging out, but I know I cared about what the boys thought of me. I cared about what EVERYONE thought of me in high school.

This date or whatever was the same night that my mom was going out to do clown cheerleading. While I was getting ready for the evening, my mother was donning her striped tights, tutu, full clownface, rainbow-colored wig, and big funny clown shoes. Mom made the mistake of telling me that she couldn't wait to show Lynn her clown costume. I remember feeling sick and a little light-headed. I told her that if she came out in the costume, I would DIE. I was not being overly dramatic. I literally thought I would keel over and stop breathing from embarrassment. I suggested (probably not very nicely) that my mother NOT come out and shame me with her craziness and she said something like, "Why should YOU be embarrassed by what I do? We are two separate people!" I hope to GOD I never say that sentence or one like it to my children.

Fast forward to the horn beep outside when Lynn and the boys showed up. I raced my mother across the living room, shoved her out of the way, and slammed the door in her face, so I could run out to the car before they saw her. I almost made it. I was in the car and the driver was pulling away from the curb when my mother bounded out to the porch with her clown pom-poms and started doing a cheer. There was a lot of jumping and flailing limbs and yelling of "Ra, ra, sis boom ba!" The driver screeched to a halt when he saw her.

"Who the he## is THAT?!" he inquired while everyone else in the car stared at my mother on the porch. I sunk into the seat and prayed that Lynn was getting my telepathic message that she should NOT correctly identify the mom behind the clown makeup. Lynn got the message. Either that or she couldn't speak because she was almost choking with laughter.

"That's the crazy lady who lives upstairs," I mumbled. "Let's go."

If Ruby reads the Richie essay one day and gets pissed, I will just tell her, "Suck it up! I could have dressed up like a clown!"

I'm wearing my big girl shoes today.

I just finished shredding every duplicate of every bill, wrote a sob story letter to EVERY SINGLE creditor (and it's all true!), printed out two copies of each letter, filed the copies, put the signed originals in addressed and stamped envelopes, and plan to mail them on my way out the door to drop the kids at Ken's while I go look at an apartment that's available in May. Na-na-nana-na. I'm a grownup!

Friday, January 25, 2008

Shipping and Handling Not Included

I think I just found the answer to all of my problems--MS and otherwise. According to the commercial that runs on late-night BBC America, Kinochi foot pads are a miracle cure for almost anything. They draw out all the impurities in a person's body, eliminating the route causes of illness. Maybe, just maybe, I don't need to go to see neurologists and give myself injections three times a week. Maybe I just need to send $19.95 to some address in the Midwest to receive stick-on gauze pads that will collect poisons I didn't know I had via the bottoms of my feet. Or I could just turn off the sexy British sitcoms and go to bed. Hmmmm. Tough call.

Now I'm REALLY Old!

Ruby has a boyfriend.

According to my 8 going on 18 year old, Richie is round, has pimples on his face, and the other girls think he's gross. BUT, he jumped in front of a dodge ball to protect her, he's good at crafts, and he's tall like her. And, although they don't talk to each other during the school day and they haven't kissed, they have a "relationship together" at after-school care. This afternoon, he made her an interlocking paper heart that said, "To Ruby, From Richie" that she is now sleeping with.

Oh my God!

You know you're not cool when... go to the grocery store, hear a pop song by your favorite band on the Muzak as you go through the checkout and, while you're trying to keep from belting out the chorus, the teenage bag checker says to the cashier, "This is the dumbest song ever."

Thursday, January 24, 2008

A Remitting Relapse

The better I feel the more I realize how bad I WAS feeling. Most of the time, when I get enough sleep, don't get too stressed out, and don't get too hot (body temp-wise), I feel like myself...BMS (Before Multiple Sclerosis). Well...almost. I still have the really low vision in my right eye but the neurologist says I may never get that back. I still get the Uhtoff's Sign thing where I have trouble walking and seeing at the same time in stores but I think I just get hot and stressed when I'm shopping. Besides, I don't really have the money to be shopping for anything other than food anyway so that one is not such a huge deal.

I stayed up too late last night (and many nights before) which left me feeling ill today. I realized that I haven't felt bad like that in a while. AND, when I spent the morning sleeping, I felt better and was able to do some work from home this afternoon.

That wasn't always the case. The fatigue I felt in the fall was nothing I could sleep away. The shocks up and down my spine were just THERE, usually when I tried to do something really athletic like sit at my computer. The numbness and tingling was random and scary and I worried about not feeling my foot on the gas pedal or the heat of a hot pan on the stove. The muscle pains felt like I was always on day two of a weight lifting plan after years away from working out. The worst, though, was the constant questioning about my cognitive abilities. I'm still not sure what's MS and what's just me but I'm not so worried about the distinction anymore.

I'm pretty sure I am officially in the remitting phase of my disease. (I'm trying really hard to resist the urge to knock on wood.) It doesn't mean there is no MS, though. It means that I have a "new normal." I can take care of myself and feel good or, I can voluntarily slip back into the relapsing phase by ignoring my self care. Today I chose the latter. Hopefully, I will make a better choice tomorrow.

Tuesday, January 22, 2008

Last Weekend In Vegas

I spent a kidless weekend in Vegas...sort of.

A couple months ago, I was invited by a vendor to attend a product show in Vegas. I immediately emailed my ex-husband to find out if he could care for the kids. Because it was a work trip and he has an overdeveloped sense of commitment to anything to do with work, he agreed. My boyfriend Ken's daughter was home from college to watch his son which meant that he could come to Vegas with me.

I should note that I do not love Vegas. It's just not my cup-of-tea with all the tackiness, quickie weddings, smoke, and buffets. Nevertheless, I have been to Vegas two times for work conferences and managed to find some fun. It's still a free plane ride, a free hotel, and a weekend with no kids, so I was excited. Unfortunately, this trip was cancelled.

The things is, I kind of forgot to tell my ex that he didn't need to take the kids for a long weekend. Whoops!

So, Ken and I started to make plans for a local weekend away. We bandied about a number of destinations: Skiing up North somewhere, Nantucket, Newport, the Cape, etc. At first, Ken wanted to plan the weekend around an activity. I nipped that in the bud pretty quickly, insisting that I needed to take it easy and enjoy a weekend with lots of rest, lots of good food, and lots and LOTS of great sex. I didn't get any arguments. Ken and I never, ever get weekends like this. Usually, when my kids are away for the night with their dad (one night out of 14), I spend the night at Ken's house, with his kids home in their beds. And, when Ken's son is with his mom (rarely and always on a weeknight), he spends the night at my house where we have to lock the door, sleep in jammies, and get up for work/school in the morning.

So, back to my Vegas weekend. Ken and I brainstormed ideas and even searched hotels. But, then, the financial sh*& hit the fan (see Financial Awakening) and I realized that I needed to: a. deal with my finances like a grown-up; b. To that end, get my condo ready for sale; and c. not spend money unnecessarily on things like weekends away. At Ken's suggestion (I LOVE this guy!), we decided to spend a weekend away at my condo.

We had a fabulous time. Ken's kids thought he was in Newport, John and the kids thought I was in Vegas, and we had an empty condo from Thursday night through Sunday night to hide out and be together. We painted the living room and bathroom,; straightened up, weeded out furniture and clutter; ate lots of great food (we risked John seeing us and went to the South End for dinner one night); I had a credit counseling session on the phone where I set up an action plan; and we had a LOT of superb sex. I mean superb, get to sleep naked and not worry about waking up at a particular hour of the morning, who cares what time it is, sex. Sex that uses up all my spoons and I don't care 'cause I can sleep for another 3 hours sex. The weekend brought us even closer together and I got my condo ready for the MLS.

Vegas is awesome.

Wednesday, January 16, 2008

Financial Awakening

I just finished opening every single envelope with a bill inside. Then, I identified the duplicates and shredded the older versions. With what was left, I made two piles--one for regular monthly expenses and one for just outstanding debts (mostly medical bills, credit cards I no longer use, and real estate taxes). I finished off my financial inventory extravaganza by creating an Excel spreadsheet (with the help of Angel Liz), itemizing my income and expenses.

In other words, I took a hard and deep look at what I make and what I owe. And, guess what? One number that is supposed to be smaller than the other is actually larger than the other. Much to my dismay, I have become a statistic. I, Julie, suma cum laude college graduate, am a victim of the sub-prime mortgage crisis. I bought my condo 2 1/2 years ago, 6 months after separating from my ex-husband when I was afraid that the kids and I would be homeless when we sold the "marital" home to split the proceeds. Except there were no proceeds. (We're lucky we sold it at all!)

So, there I was: A single mom of 2 kids of different genders, and the proud owner of a 2BR condo that is basically an apartment. I had two mortgages for more than the condo was worth, and no money to pay off the one that I thought was temporary. Oh! Did I mention that I somehow missed the fact that the largest loan had a variable interest rate and that neither mortgage included real estate taxes?

So, here I am: It's 2 1/2 years later, the interest rate is going up, up, up, the condo fees have increased, the tax bill is overdo, and my expenses have increased with all the medical bills that aren't covered by insurance.

But, you know what? I feel good. I wrote it all down and I have the two piles. It's out there. It is known. Things always look better in the light. I have identified the elephant in the middle of the room. I have taken the first step. AND, after celebrating with every platitude I could remember, I called a non-profit, FREE debt/mortgage assistance company I read about in a "Those Poor Victims of the Sub-Prime Mortgage Crisis" article in the Globe. I completed all the online forms (using my new spreadsheet as a reference tool), and made an appointment for a telephone counseling session on Friday.

I am letting it go. I am prepared to take whatever steps necessary (walking away from the condo or staying in the condo, consolidating debt, calling lenders, etc.) to finally be a grown-up with money. I am not asking anyone to bail me out and I am not playing the victim anymore.

I've been beating up on myself for 2 1/2 years for making the bad decision to purchase this condo. Well, you know what? I'm done! Regret is a total waste of time and it doesn't change anything. The only thing that changes anything is doing things differently. So, that's what I'm doing. (And, besides, if I could go without sugar for 16 days and counting, I can certainly do this!)

I don't know what the future is going to bring. None of us do. But, with MS, there's even more uncertainty--or at least the PERCEPTION of uncertainty. So, since I don't know what my health situation will be like in the future, I better get my money sh&% together in order to fund whatever fun comes down the pike.

Monday, January 14, 2008

Snow Day!

Do you remember when you were little, listening to the radio on winter mornings, and hoping and praying that you heard your town on the list of school closings?

Those days have changed. Now, the Superintendent of Schools wakes up your parents at 5:30 a.m. with an automated message telling you that your school is on the list.

So, here we are. We're watching Clifford, Ruby is coloring, and I'm checking email and making paper airplanes for Zane. When the snow stops, we'll put on our snowsuits, go outside, clean off the car, have a snowball fight, and sled down the driveway of the condo. I even have cocoa for when we come in. June Cleaver, Carol Brady, eat your heart out.

Sunday, January 13, 2008

A Father and His Son

On Friday afternoon, my father flew in from Florida for the weekend. My boyfriend Ken and I picked him up at the airport, which is always a challenge. My dad has emphysema and, although he had a lung bypass (he is the only surviving patient of this experimental surgery) and is no longer hacking up a lung every 5 minutes, he still gets very winded walking long distances. And, he vehemently refuses a wheelchair or scooter. He would rather stop every so often, lean against the wall, and wheeze. At Logan International Airport, it's impossible to avoid walking long distances. 9/11 fixed that.

Ken wanted to NOT park and just circle the airport while I went in and met my dad. I insisted we find a spot in Central Parking (and even got a little snotty about it). I think I wanted Ken to come with me because of how I always feel like I'm in trouble when I first see my dad. Thank God it passes after a while now. Also, I am having that Uthoff's Sign thing again and it's hard to walk and see at the same time. This makes it a bit difficult to navigate the airport and find people...the people you're looking for anyway. I end up having to look down at the floor while I walk which gives me the appearance of a person who has dropped something or is painfully shy. I've had a lot of trouble winding down and getting into bed at a decent hour the last several nights so I'm pretty sure this symptom resurfaced because of being overtired. With MS, there is no "get out of jail free" card when I abandon the self care.

While Ken took the very long walk back to the car, my dad and I just hung out in Baggage Claim, discussing symptoms and treatments for emphysema and MS--like two elderly neighbors comparing their long lists of ailments. Eventually, my dad, Ken, and I were in the car, headed back to my house to hang out for a while before I left to pick up the kids.

My dad is not staying with me--not because he doesn't like me or he's not welcome, but because he got a better offer. My older brother, John, invited and paid for my father to meet him in Boston and go to the Patriots' playoff game. I believe the Pats haven't lost a single game all season so people are really hyped up about it. Not me. Football is not my game. Actually, I don't really HAVE a game. I prefer HGTV to any sport on television. And, what happened to Monday Night Football anyway? It is now on Saturday, Sunday, and Monday! When did that happen and why??? One weekend night recently, I was looking to veg out on the couch in front of the TV and football was all all three major networks!

But I digress. My dad and Brother John (not to be confused with Ex-John) like football. So much so that Brother John bought heated box tickets to the game for God knows how much money, flew here from Lake Tahoe, flew my father here from Sarasota, got a hotel room at a very posh hotel on the Waterfront, and is booking a "car" to take them to the stadium 30 miles away.

I think Brother John is worthy of a bit more description. My brother is a self-made multi-millionaire who never went to college. He lives in Lake Tahoe right now but he's also lived in Key West, Hawaii, Australia, LA, Japan, and a luxury motor home last summer and fall. When people ask me what John does for a living, I don't totally know how to answer. He starts businesses, makes deals, buys property, sells business and properties, and makes money. As my dad likes to say, John loves the game of deal-making and the money is just the way he keeps score. It's very hard to believe we're related or that he came from the same family. We weren't exactly poor but we shopped at thrift stores, always used coupons, and my parents lived in a trailer when I was born. We did NOT grow up sitting in heated box seats at NFL playoff games.

John does not look like what I used to think successful businessmen looked like. He looks more like a rich white rapper or something. He is a very muscular, incredibly image-conscious man. He has a nipple piercing and many, many tattoos, including the Cat-in-the-Hat reclining on his lower back, a large flame around his navel, and a scene of some kind that looks like a female deity holding up his man boobs. He also has (or used to have--he's always editing his tattoos) various cartoon characters around his substantial biceps. John has sapphire blue eyes and a pearly white smile, both of which he flashes liberally whenever he's flirting with someone. And John is ALWAYS flirting with someone. He flirts with little girls, old ladies, gay men, women in the car next to him on the highway...he is ALWAYS flirting.

John dresses pretty casually but I'm sure his jeans cost more than my couch. He keeps his salt and pepper hair very close to his head and has a little goatee and mustache. (He's had many, many different looks over the years including very long, Milli-Vanilli kind of hair and a dyed-blond crew cut.) He wears knit caps a lot and has what I'm guessing are platinum and diamond earring plugs in his ears--the kind where they stretch the hole open and you can actually see through the earring to whatever is behind the person. (Ruby and Zane kept taking turns putting their pinkies inside the holes like it was some kind of magic trick.)

John's wife is Mardene, rhymes with Sardine. When John was newly sober, he met Mardene (who is also in recovery) at a meeting in Key West. At the time, Mardene was a professional juggler who also rode a unicycle and ate fire during performances. At one time, she was married to her performing partner and, apparently, they were quite famous around the world. Mardene doesn't juggle professionally anymore--apparently it's quite hard on your body and Mardene is over 40. Now, she does some acting, helps John manage his various stuff, and travels with my brother.

I knew Mardene for a few years before I ever saw her in a shirt that did not bare her midriff. Mardene is probably a size 0 or something and has BIG dark brown, curly hair. As of a few years ago, she also has BIG breasts. I didn't know about Mardene's boob job until a couple summers ago when they came to P-town for vacation and the kids and I drove down for a visit. We pulled up in my painted minivan (after getting in what was probably my 3rd rear-end collision on the way to P-town which I now think was my diminishing vision). Mardene very excitedly ran out to say hi (we hadn't seen each other in about 2 years since they were living in Hawaii at the time). She was several yards from the van when I saw her new, MUCH BIGGER rack.

Before my self-editor kicked in, I yelled out the window, "Where did you get the boobs?!" I'm a real class act. Very, very subtle. Ruby was horrified at my crass remark so I quickly tried to explain the reason behind my question. Mardene who was and is, incredibly proud of her new boobs, just laughed and told me she always wanted them bigger so she finally did it. Later, when we were alone in her room, she lifted her shirt to show them off. I have seen many breasts in locker rooms, etc., and I have to say, as breasts go, these were quite impressive. They were very, very "perfect" though and almost too round. I also noticed, throughout our visit, that they didn't move much. I guess mine don't move much either but that's because there isn't quite so MUCH of them.

Mardene is not John's first wife. When he was 19 years old, he married a woman named Lisa who was in the Air force. Their marriage took them to Japan until John got Hodgkin's Disease (cancer of the Lymph nodes) when he was 20 and had to go to Hawaii for treatment. The marriage ended, the cancer went into remission (and has stayed there for 25 years), and John began a live of travel, physical fitness, dysfunctional relationships, and, for a time, some heavy-duty drinking and drugging.

Between Lisa and Mardene, John has been engaged like 4 or 5 times. (There was a joke in our family for years: How do you know when John is going to break up with someone? He proposes.) I don't even remember all of his fiances. The ones I do recall are Tiffany, Barb, and Mardene. Only once did he go so far as to plan a wedding and send out invitations. It was with Mardene. Surprise, surprise, they called it off about a month before the wedding after everyone bought non-refundable plane tickets to Hawaii. THEN, several months later, they reunited and eloped to Vegas where they were married by a chapel minister dressed as Elvis. I think Mardene and John were made for each other.

So, back to my dad. After the airport, Ken dropped us off at my condo where my dad had never been before. Usually I see him at my sister's house in Connecticut when he comes North. We had some coffee and just sat and talked for about an hour...all alone...and I ENJOYED it! This is the same man I once hid from when he came into the Marshall's where I was working in high school. This is the same man who didn't come to my college graduation because I didn't send him a printed invitation. We have come such a long way and I'm very grateful.

When we picked up the kids at school they were very excited that Grampy was in the car and coming to our house! After the kids showed Grampy every single one of their toys and watched 2 episodes of Curious George, we met my boyfriend Ken at Jimmy's Diner. Zane is not the most well-behaved 4 1/2 year old in a restaurant and, for each minute after 6pm, it gets worse. We got there at 6:15. Uggh.

I do NOT love parenting in front of my dad. He always reacts to my discipline as if I'm being a hard-a##. I want to say, "Are you fricken kidding me?!! If I crawled under the table in a restaurant, you would have dragged me to the car by my neck and that would have only been the start of my punishment!" But I didn't. I just tried to breathe and remember that my dad has changed and I don't have to be especially tough or especially easy on Ruby and Zane in reaction to how he raised me.

After dinner, Ken drove my dad to the hotel. Can you imagine? Giving up a chance to stay on the pull-out couch I got from Craigslist Free Stuff to stay in a multi-star hotel with an elevated soaking tub and separate shower in the incredibly large bathroom? To each his own, I guess.

On Saturday, the kids and I took the subway into Boston to meet my dad and Brother John. What a fiasco! We got off the train at Downtown Crossing and, per my brother's instructions, we walked down Washington Street toward Borders where they were being dropped off by a cab. We played on benches outside the store until Brother John called to say they were a few blocks up the street and were taking a cab back to the hotel so my dad could get his inhaler. I suggested we let them go and then they could come back to meet us at a restaurant. (At this point, I was thinking Wendy's or maybe a food court.)

Brother John had something else in mind. It was almost nap time (he takes a siesta every afternoon, wherever he is, no matter what), so he wanted us to eat in the hotel so he could then go up to his room and get to napping as soon as possible. I expressed concern that the hotel restaurant was probably a little too "fancy" for my children especially when they were too tired or hungry (they were tired AND hungry since it was now 2pm). John disagreed and his vast experience as the father of 0 children knew best. He was buying and I didn't need to stay at the hotel after Ruby and Zane left their mark on the dining room, so I acquiesced.

The hotel restaurant was decorated in a French Provincial style with blue toile seat cushions on painted yellow chairs with big wrought iron chandeliers hanging from the ceilings. Naturally, there was no kid's menu. The children each ordered an Angus burger with cheddar cheese at $18 a pop. (Did I mention my brother was buying?) I made the mistake of ordering soup as a starter which I should have realized would delay the children's food even further since they were a one-course at a time kind of restaurant.

While we waited for the food the kids ate bread and crackers and were pretty loud even though they were trying to be quiet. Ruby kept making comments like, "Are these cups real glass?," "This is a fancy place. The menu isn't folded!" "This must cost a lot of money. I want to stay here!" Thank God I had my back to the rest of the dining room which was only half full since it was between lunch and dinner.

Zane kept kneeling on the floor and putting his head on the chair, saying he was sleepy. When he wasn't doing that, he kept picking up the knife and banging it on the water glass, repeating my brother's "Cheers!" in what was definitely NOT an inside voice.

I held the prospect of dessert over the children's heads in an effort to get them to be on their best behavior, hoping there would be something they would actually like on the dessert menu. After lunch, I ordered them each a dish of chocolate ice cream which arrived with a long, skinny beige cookie poking out of it and garnished with a sprig of fresh mint. Zane didn't want the cookie or the mint. I was afraid I might eat the cookie (I haven't had sugar since New Year's Day) so I offered it to Ruby who was skarfing down her $10 bowl of ice cream across the table.

She said, "How come I didn't get a cookie in mine?"

"You did!," I corrected her. "It was that long skinny thing sticky out of the top of the ice cream that you just ate."

"Oh," she answered, "I thought it was a french fry."

I doubt we will return to the restaurant in the Intercontinental Boston before the kids graduate from high school, but it was fun. We laughed a lot and it was time limited which is always good with Brother John and me. For most of our adult lives, there has been tension and misunderstanding when we get together. I think we just always assume the worst about each other which is really quite sad. I am going to examine the conversations we had a little deeper to see if I owe him amends. I think I probably do for my overreactions. Don't get me wrong. There weren't fireworks and we didn't swear or come to blows. It just didn't feel like I could talk to him without being angry and petulant.

When we finished lunch, the kids and I hugged and kissed my dad and brother goodbye, and wished them a fun evening at the football game. Then, we walked the three blocks to South Station which took about an hour and involved much whining and hand squeezing. Most of the time, it was Zane whining and me squeezing his hand (too hard, I have to admit), whenever he tried to break away from me on the busy sidewalk.

The subway ride home was long and tiring but it brought us back to our real lives with turkey hot dogs for dinner, baths, and an on-demand kids movie. I like my real life. I would, however, not be adverse to a long, solitary soak in that hotel room bathtub.

Thursday, January 10, 2008

A More Positive Perspective

Although the stress of my day has continued, my attitude has shifted...thank God. I really have a hard time hanging out with pessimistic, whiny people even if one of them is me.

Media outlets have to give equal time to all candidates in all parties so I guess this blog should follow suit. I will now give equal time to my Pollyanna-like willingness to find the silver lining in the dark cloud, make lemonade from lemons, and turn poop into compost.

Here's Lazy Julie's List of Good Stuff in My Day:

  • I have a disease that lets me know when I need to take care of myself. Although I'm 43, I've never really figured out how to do the whole self care thing. Now, I have lots of incentive to learn. When I take care of myself, I feel good. When, I don't take care of myself, I feel bad. Kind of a no brainer.
  • I met a fellow creative non-fiction author today! I'm working with a new agency on the creative and copy for a direct mail project at work. In an email from my account exec, she mentioned that the copywriter on my project had written a book called Shut Up About Your Perfect Kid! I responded via email that I loved the title and that I was writing a book, too. The account exec then told me that the copywriter/author wanted to talk with me about our book projects. So, Author Gina (not to be confused with Nurse Gina) and I started emailing which did wonders for my stress and negativity. I'm learning so much about the process of publishing, promoting, and selling a book which is inspiring me. Author Gina's book is (I believe, since I only read an excerpt online) is also creative nonfiction, taking a humorous but truthful perspective on parenting children with special needs. Author Gina wrote the book with her sister. To learn more, visit the Shut Up About Your Perfect Kid Website.

And now, because I'm learning self care and its after 11pm, I am signing off. The list would have been long, I promise. More positivity tomorrow.

Stressed to the Max

Just thought I'd open up my head and release some of the stress that is starting to come out my ears. Be prepared: This will not be one of my more inspirational or positive posts. If that's what you're looking for, try or read something from a different day.
I have decided to wallow for the next few minutes and it's my blog so I can do whatever I want. I don't think this will make it to the book. Or maybe it will. I mean, part of what I'm trying to do here is to show that life is challenging and not always pretty. Life doesn't HAVE to be full of sunshine, butterflies, and acceptance all the time. I'm relatively sure that no one, absolutely no one, feels like dancing across the mountains like Julie Andrews in The Sound of Music. (It was Julie Andrews in The Sound of Music, right?) And, wasn't she running from the Nazis anyway? What in the he%% did she have to sing about??!! Okay, maybe that example doesn't help my case since the Nazis are way worse than MS and she was still singing.
But I digress. Back to the matter at hand. Here, for you blogging pleasure, is Lazy Julie's Stress List for Today. (Thank GOD I only have to live one day at a time! If I knew I would feel this yucky tomorrow, I might not get out of bed.)
  • I have a disease that acts up and slows me down when I experience stress or do not get enough rest.
  • I have a job that is very stressful and doesn't get done if I slow down.
  • I have a very small, two-bedroom condo that I'm stuck in because I paid too much for it just before a downturn in the real estate market and it's not worth what I owe.
  • I have two children who would go to bed a lot easier and get along a lot better if they did not share a room, even though it is the larger of the two bedrooms in my condo.
  • When my children struggle to get to sleep at night, it delays my work in the evening which then delays my bedtime which then leaves me exhausted which is not good for my MS.
  • I am overwhelmed with financial unmanageability which has resulted in a pile of medical bills that I need to discuss with the insurance company, an adjusted mortgage I can no longer afford but can't get out of, and numerous other bills that are overdue which causes me a lot of stress.
  • Although I have isolated the pile of unpaid bills and have a plan to get help to attack the ARM/sub-prime mortgage issue, I haven't found time to DO anything about it last night or today because I've been doing work and trying to get the children to bed.
  • I got a bad review at this job so if I want to keep it, I have to work way beyond my 32-hour work week to make sure NOTHING on my very full plate falls through the cracks. (Sorry for the mixed metaphor.)
  • I have a disease that acts up and slows me down when I experience stress right eye aches like someone is twisting my optic nerve and squeezing my eyeball from inside my brain. My hips and legs keep "falling asleep" when I sit down so I keep adjusting my office chair and driver's seat to try to get comfortable. I am BONE tired like, if I sit down long enough without anything to write or anyone to talk to, I could completely fall asleep. My stomach is very unsettled and I've had to use the bathroom many times more than usual today, which probably means my Ulcerative Colitis is acting up which saps my energy even more.
  • I am on day 10 with no processed sugar and I just watched my colleagues eat chocolate fudge brownies. 11 days ago I would have eaten AT LEAST1 1/2 and then crashed a few hours later. (Perhaps this item should go on the "Aren't I Amazing" List. It would be a short list today.)
  • And finally, and perhaps most annoying of all, I really need to color my hair and I don't have money to have it done professionally or time to use the "do-it-yourself" box sitting on my bathroom counter. So here I sit, roots showing, hips and thighs tingling, stomach gurgling, eye throbbing, and very, very stressed out.
  • This is REALLY the last one. I have a PILE of work on my desk to complete before I am scheduled to leave for the day in 2 hours. It looks like another late night. Stress venting break is over.

Tuesday, January 08, 2008

A Peculiar Pide Piper*

I ran out of gas in my parking lot this morning.

The children and I, in our usual frantic rush to get to school, child care, and work on time. did not have a moment to spare. We put on our coats (totally unnecessary on this Globing Warming January Day with 60 degree temps outside), dumped the garbage, and headed to the parking lot. I loaded all the various bags into the car, buckled the kids in, and proceeded to turn the key in the ignition. It revved and then immediately shut off. I tried again and again, even though I was pretty sure I had already identified the problem.

I had run out of gas. Yesterday, when I was almost all the way to work (rushing again), the "need gas" light came on. I noted the appearance of the light but continued on my way to work, thinking I would stop at the gas station after work. So, after work comes, I get in the car and start driving home. About half way there, I notice that my gas gauge reads "full." I called my boyfriend Ken to ask if he thought my gas gauge was broken or if there was a slight chance that gas fairies came and filled my tank for free while I was parked in the garage at work. Guess which option he picked?

Ken suggested I get gas on the way home which I promptly ignored since I was rushing (again!) and I knew the kids would want to go right home and eat dinner as soon as I picked them up. So, home I went and then continued on my merry way, doing my at home activities with the kids (dinner, baths, reading, homework, etc.) sure that I would remember to stop at the gas station at the base of my complex driveway first thing in the morning. It never, ever, ever occurred to me that I wouldn't be able to MAKE it to the gas station.

So, there we were. Sitting in the car at 9:12 this morning, 3 minutes before Ruby's starting school bell was scheduled to ring, with not enough gas to even start the car. I had the children get out of the car, hold hands (Ruby with me and Zane with Ruby, per their request) and proceed up the driveway to the gas station. On the way, I remembered that my checking account shall I put it?...rather CHALLENGED today so I better not use my ATM card. In the cash section of my wallet, I found an absolutely GORGEOUS $10 bill. Thanks be to GOD!

So, our little parade arrived at the gas station where I assumed I would see our friend Hussein who pretends to have a dog in his coat when the kids and I stop to get gas. (It sounds creepy but it's really quite cute and harmless.) No Hussein. Not even Muhammad who saved me when my new Volvo wheel almost fell off during my state inspection. Some other short gentleman, probably of Middle Eastern descent (I mention this for a reason that will become clear later) is in the office.

"Hi!" I said, smiling at the man as he eyed our crew warily. "I ran out of gas and need to buy $10 worth, put it in a gas can , and carry it down to my car so I can start it." The man, let's call him Melvin (because he looked nothing like a Melvin so I'm pretty sure that's NOT his name), just stared.

So, there the kids and I were, on foot at a gas station, all holding hands. I think Zane may have been singing something about frogs on a log at the time. With a very suspicious tone, Melvin finally answered,"I don't know if I have a gas can, let me look." Inside the office, I saw a line of brand new gas cans, presumably for sale. Unfortunately, I only had the $10 which I needed for gas.

Just as he walked away, Ruby said very loudly, "Everyone who works here is from a different country!" I resisted the urge to display my white liberal guilt by yelling after him that we think diversity is just grand and that Ruby didn't mean anything bad by her comment.

Instead, I yelled, "I know Hussein!" as Melvin went into the garage looking for a less pristine gas can that he could possibly loan me.

When he came back out, Melvin seemed really nervous about parting with his gas can. I tried to reassure him. "I live right down there," I said, indicating the driveway to my complex. "I come in here all the time and Hussein is our friend," I added, indicating the children and myself. I thought about telling him about the dog in the coat but I wasn't sure if he would think I was a gas-can stealing lunatic and lock himself in the office, leaving me stranded with no gas.

"My gas gauge is broken or something," I quickly added. "Otherwise, I would have gotten gas last night." Now I was babbling. "I would have gotten it last night but it said full but I knew it wasn't really full and I thought I could make it up the driveway and stop in the morning. I didn't know I didn't even have enough gas left to start the car."

Melvin must have realized that we were harmless and I probably wouldn't make up a story where I came across like such an idiot just to get my hands on his greasy gas can. He took my ten dollars and filled up the can, then asked me when I would be back with the empty can.

"As long as it takes for me to walk down the driveway with the can and the kids, put the gas in my car, and then drive back up here with the can," I answered, trying not to sound snotty or let him know that I thought that was a mistrustful and incredibly stupid question.

Just as Ruby, Zane, and I linked hands and began what I now think of as our Peculiar Pide Piper line, complete with a very full gas can, back down the driveway, Muhammed drove up. Melvin nervously ran up to Muhammed's car, gestured toward our little group, and asked hopefully "You know them?"

Muhammed nodded and smiled and asked yet another stupid question: "Did you run out of gas?" I babbled out my gas gauge story and promised to bring the can back toot sweet. Hopefully, I didn't actually say "toot sweet" because that's a Grammy phrase and probably wouldn't help my case for sanity.

I had to carry the heavy gas can in one hand and hold on to Ruby's hand with the other. When my wrist started to ache half way down the driveway, I switched hands which meant the children had to circle around me. They were having a ball! Singing, dancing, talking about the gas can, asking if they could walk all the way to school, etc. I don't think I snapped at them at that point (I hope!) because I was just grateful I had the gas and that we would soon be on our way.

We got to the car, I buckled the kids in again, and opened the gas cover thingy on the car (can you tell I know a lot about automobiles?). I inserted the nozzle of the gas can into the opening, and started pouring. Gas started spilling on the ground. Precious gas. After a few seconds, I figured out that I had to push the can nozzle through this little metal circle thingy to make sure it actually went into the tank. I filled it up, started the car, returned the gas can to Melvin and Muhammed, dropped the kids off, and continued on my way, reeking of gasoline, and feeling like a LOSER.

On my long commute to work, I decided that instead of focusing on how I was late to work, I was an idiot for running out of gas, etc., I needed to focus on the positive. It was a good story, there was nothing I could do to change it, and Ruby and Zane are lucky to have a mother who doesn't always have it all together. I mean, how boring must life have been for Wally and the Beav? They always knew that June would be home, wearing a well-ironed dress, not a hair out of place, with fresh baked cookies on the table. Did June Cleaver even have a driver's license or did Ward always drive? Of course she never ran out of gas!

And what about Carol Brady? Did she have a job outside of giving lame advice to her 3 daughters and 3 stepsons and drinking coffee with Alice? And, she had a full-time maid to do cooking, housework, and to get discounts on chops from her boyfriend, Sam the Butcher. AND, she was married to an architect (not a bad salary, I'm sure). She had cushions galore!

I am not a TV mom. I am not even a radio or magazine mom. I am me. I am imperfect, messy, late, broke, and disorganized sometimes. And, I still smell like gas.

* This essay was original entitled "Ghetto Pide Piper." I changed the title when it was pointed out to me that I may have sounded racist or classist. I am very sorry if I offended anyone. I truly didn't mean to imply that I am any better than anyone else. I am fortunate to have a roof over my head in a safe neighborhood, etc., but I am one paycheck and a patchwork quilt of people away from poverty. I am certainly not in any kind of a position to be a snob.

Monday, January 07, 2008

Restorative Yoga

I fed Ken and Matt dinner last night (a repeat of our make-your-own burrito menu from Karen Teacup's house on Friday night). In return, they stayed with Ruby and Zane while I went to a restorative yoga class at Nancy's studio.

It was awesome. We "rested" in very gentle stretching yoga poses supported by pillows and blankets for about 10 minutes in each pose. While we were in the pose, a Reiki practitioner and a massage therapist circled the room and gave us Reiki and/or massage. I didn't fall asleep, which was good, and I was probably successful about 50% of the time---ok, maybe 40% of the time--at focusing on my breath and keeping my mind in the room. The massage was incredible (head, neck, shoulder, and arms). Not too hard and not too soft.

Reiki was really powerful, too. Afterward, Nancy said that she felt my body literally pushing her away with it's energy when she touched my eyes. Her hands felt very hot on my skin and she said she felt something similar to electricity go up her arms. She thought that meant that I could really benefit from regular Reiki and promised to give me a few minutes at the end of yoga class if I couldn't come for sessions.

I'm not sure how or why Reiki works but I believe it can be very healing. I'm not delusional, though. Reiki is NOT going to cure MS but I do think it can help with symptoms.

My eyes feel like the epicenter of my MS since that's where my symptoms started, where the nerve damage has occurred, and I'm still not totally convinced I won't go blind. (Have I already written about my "Welcome to Blindness" weekend seminar idea for the Perkins School for the Blind?) When Nancy touched my eyes, in addition to feeling heat, some pretty intense emotions came up--fear, sadness, anger. More layers in the acceptance process, I guess.

At the end of the class, Nancy read something I don't totally remember except for one line. "Do what you love," it said.

"I love to write," I heard myself say inside my head (at least I HOPE it was inside my head because otherwise my classmates probably questioned my sanity and/or wished I would respect the silence rule for restorative yoga).

And I do! I absolute LOVE writing. It nourishes me and makes my spirit come alive. That's what I want to do...write. Specifically, I love writing creative non-fiction as my Writing as Women teacher in college called what I always thought of as my quirky column style. I AM doing what I want to do, what I love to do. I AM writing creative non-fiction with this blog/book. Am I lucky or what?!

Shopping for a Trading Bra

Ruby and I bought her first training bra. (She initially asked for a "trading" bra and I very insensitively burst out laughing and asked if she was going to trade bras with her friends. She thought it was funny, too, so I was forgiven.) Although Ruby is only 8 1/2 years old, she is definitely starting down the road to puberty. She would be mortified if she knew I laid out specific evidence of her prepubescent status, so we'll just say she needs a shower every day and even if she had short hair and wore boy clothes, you'd probably be able to tell she's a girl.

Ruby recently learned that a friend of hers got a "trading" bra and decided she was ready, too. Since I DISTINCTLY remember my mother telling me I needed to stay in an undershirt when I told her that all the other girls were wearing bras in 7th grade and I was embarrassed when we changed for gym, I decided to say ok. And, she was already wearing undershirts to make sure she wasn't revealing anything she shouldn't in t-shirts and thin blouses.

So off to Walmart we went. I was appalled at the selection. Although we visited the GIRLS department (NOT women's lingerie), there were padded, underwire bras. Teeny, tiny, padded, demi-cup, underwire bras that would presumably accentuate prepubescent breasts in a t-shirts. EWWW. Who makes these? Who lets there girls who are size 4-12 in the GIRLS department wear these bras?

Since one of these padded bras had Hello Kitty or some other anime character featured prominently on both quadruple A cups, Ruby, of course zeroed in on that one. I said, "no" and gave her a choice between several different sports bra type options--some solid color and some with a print. She whined a bit and kept picking various padded bra versions. I held firm and then she asked "why not?" I told her what I always tell her when she wants to wear something that I deem too grown up. I said, "Because it's too grow- up looking and you are a little girl. There are bad people in the world who like little girls to look like grown-up women. If you wear these grown-up clothes, these bad people will like you and may want to hurt you. I want you to wear girl clothes until you are a woman."

"No sir!," Ruby whined. "You just don't want me to have what I want!" We were now attracting stares from other moms and daughters. I wasn't sure if they were feeling sympathy for Ruby or for me.

"Why wouldn't I want you to have it?" I asked Ruby. "Why would I lie?" She didn't have an answer but continued to whine anyway. And then, I pulled out the mean mommy threats, tainting what was supposed to be this special mother-daughter shopping trip.

"You have a choice," I said, through gritted teach. "Pick one of the ones I showed you or we will walk out of this store with no bra!" Ruby snatched a set of three much more age-appropriate sports bras in red, black, and white and flung it into the carriage. Mean mommy returned when Ruby asked to buy chips on the way out and I snapped, "We came for a bra, not junk food!"

The next day, however, when she donned the bra under her t-shirt, she kept staring at herself in the mirror and rubbing her hands over her nearly flat but not-quite chest. She was grinning ear to ear, obviously recovered from the trauma of her mean mommy not letting her buy her undergarments of choice. "Feel it!" she invited excitedly.

"No thanks, Ruby," I answered and then made her swear that she would not ask anyone else to feel her bra and that she would, under no circumstances, lift up her shirt to show anyone either.

"Why would I ever do that??" Ruby asked incredulously, looking at me as if I had just suggested she wear her pajamas to the prom or poop in public.

Friday, January 04, 2008

Cushion or Patchwork Quilt?

All the MS literature has sections for caregivers. Some of the books have stories of particular caregivers who, although incredibly generous, supportive, and loving, struggle with feelings of helplessness, being overwhelmed by responsibility, anger, acceptance, and fear. They are parents, spouses, and even siblings who seem to automatically become a caregiver or cushion for their family members with MS. What the books don't say is how I can get me one of those caregivers.

As a single mother born into a dysfunctional family that is now scattered around the country, I don't have a caregiver. I am cushionless. When I'm feeling particularly sorry for myself and frightened about the future (only about every other day at this point), I consider some pretty radical steps to get one.

Radical Scenario #1: I consider breaking up with my wonderful boyfriend and going on a serious, finding-a-husband-to-take-care-of-me mission. That might not sound like a big deal for some women, but for me, it's absolutely horrific.

I grew up believing that I would never ever as long as I live get married. My parents' relationship wasn't exactly healthy. To me, marriage meant giving up your name, your identity, your safety, your dreams, your power--marriage meant giving up yourself. I was not interested. I always wanted to have children but once I learned about the birds and the bees, I also figured out that you didn't need a marriage license to make babies.

Meeting my ex-husband did not immediately change my mind. We lived together for 9 years before we got hitched at the town hall one Friday morning, keeping it a secret from almost everyone until the deed was done. The ONLY reason I succumbed at that point was that I wanted to have a baby and it was more important to him that we BE married to have a baby than it was to me to NOT be married. I couldn't do a wedding because I didn't want to think too hard about getting married plus I didn't know how to have an actual wedding with none of the sexist traditional crap.

But married I was, and since he's my ex, you can guess how that worked out. We had two fabulous children, though, so it wasn't a total waste of time.

So, why would I consider marriage to a "provider" as a cure-all for my MS-related anxiety? Maybe it's because of all those fairy tales where princes come and rescue the poor, vulnerable female in need of saving. My hair isn't as long as Rapunzel's, I didn't eat a poison apple like Snow White, or have a wicked stepmother like Cinderella. I guess I'm not really the damsel in distress type so my prince probably has other plans.

Radical Scenario #2: Ruby, Zane, and I move in with my father and his wife in their Sarasota, Florida condo. (There are versions of this one that involve moving in with various friends, maybe even another single mom like Kate & Allie.) In my fantasy, my dad would ask us to come and of course, I wouldn't be required to pay rent or anything so I would no longer have any financial worries. I could write full time and when I get paid for a project, I could travel the world with the kids but have my dad's house as a home base to return to.

This particular fantasy is even more absurd than waiting for my prince to come. Although my father does not drink today, he is still a dry well in many ways when I need support. I mean, I love my dad and I know he loves me but he bought me a Buick when I was diagnosed with MS. Not your typical demonstration of compassion.

The other problem with this plan is that Ruby and Zane have a father who lives in Massachusetts. He has his faults but my ex loves his children and would probably object to me moving them to Florida.

And then there's the fact that Florida is one of the hottest and most humid climates in the U.S. I didn't have an MS diagnosis last summer or any severe symptoms, but I now know that heat exacerbates my illness. I've recently discovered that when I take hot showers, I have more trouble with fatigue, muscle pain, and my eyesight. It was after I went Christmas shopping in my winter coat that I started having Uthoff's Sign symptoms of not being able to focus my eyes while walking. So, there I'd be: lying on the beach and writing and then having to be helped to the car because I wanted to get a tan.

Radical Scenario #3: I move in with my boyfriend, Ken...even though it's been suggested that I NOT make any major changes for the first year after diagnosis. Every time I try to flesh out this particular fantasy, it falls flat since the obstacles to success are everywhere right now. (Although this is a little different than the prince scenario, it has a similar rescue theme which has initial appeal but many drawbacks upon further investigation.)

There's the practical reasons it wouldn't work right now. I can't sell my condo, probably for the next couple of years, because I wouldn't get what I owe. His house is just big enough for his current family and neither one of us has resources to buy a bigger place.

Have I mentioned that Ken isn't ready to move in together? This is probably a good thing right now, too, because of the way it would affect our families. He has a 12-year old son who is, among other things, going through adolescence. Ruby has a bit of a crush on Matt and ALL of his friends, which would probably be a big pain up close and personal. Zane is a big fan of all of Matt's toys which would also get annoying if his visits to Matt's room became a daily instead of weekly occurrence.

Like me, Ken is a single custodial parent but his ex is way less involved and consistent than Ruby and Zane's dad. So, although I would have a partner to share responsibilities, I would also have MORE responsibilities and I'd have to negotiate issues of different parenting styles, different expectations and rules for children, financial issues, etc.

After rejecting these scenarios, I'm left with the reality of my situation. I have MS and am a single mother of two young children and the grown-up daughter of a dysfunctional family now scattered across the country. It is true that I do not have a single caretaker or cushion.

But as my counselor reminded me today, I am not just crashing to the ground, cold and all alone. I have created a patchwork quilt of people to help cushion my fall and keep me warm. If and when I falter, I don't necessarily know who will be able to be there for me in a given situation. But someone always is. I reach out to friends, some family, church, neighbors, and a very kind and loving boyfriend, and I get the support I need. I have been and will continue to be cared for when I need it. I've also learned to be my own caretaker, looking within to find the strength and confidence to get through tough situations.

Who needs a cushion? I have a beautiful, well worn patchwork quilt. Each contributor brings something special and unique to this creation. If you'd like to add a square, let me know.

Looking Back on Deli Hell

I've decided that I will not be intimidated at the deli in 2008. (I made this resolution late on New Year's Eve after describing to my boyfriend the trouble I had with getting the prepared salad portion of our dinner.)

Yes, that's right. My name is Julie and I have a fear of grocery store deli counters. This is the deal. I feel like there are deli counter rules but I don't know them. Then, I learn the rules and they change! I always, always screw up, break the rules, and incur the wrath of the deli counter staff. I feel like you are supposed to know exactly what you want immediately when you approach the deli, even if you haven't had an opportunity to review the offerings. Perhaps, some people make a list and know ahead of time that they prefer Boar's Head turkey breast over the store brand, but not me. I don't even know I want turkey breast until I get there and see it.

So, I no longer buy my sandwich meat or sliced cheese at the deli counter. I buy inferior, over-processed cheese and meats in the prepackaged section where there are no rules and no angry deli counter personnel. Once, in a while, though, I want potato or three-bean salad and I don't want to make it myself. I have to really want it bad, though, and the circumstances need to be perfect for me to risk a visit to the deli counter. There has to be no line since the whole "take a number' thing gives me an anxiety attack since years ago I picked a number and waited only to have the deli counter guy yell at me that they weren't doing numbers that day. There can't be too many other customers around to witness my ineptitude, and I absolutely, positively, can't have the kids or anyone else with me.

So, here I was. It was 6:30 p.m. and I was on my way over to my boyfriend's for dinner and a movie on New Year's Eve. He was in charge of picking a romantic comedy at the video store and I was responsible for dinner. Since I waited until the last minute, restaurant take-out food was not an option. So, I went to the grocery store to get sushi, sorbet and some other grownup food to pick on while we watched the movie.

When I passed the deli counter the first time, I decided that there simply had to be other options. I picked up the sushi, some good bread, the sorbet, and then realized I needed something tasty and special to put on the bread as well as a side dish--preferably healthy, low-fat, and meat and sugar free so I could start the year off right. So, I put on my mental big-girl shoes and returned to the deli counter. I perused the prepared salad section, vowing to not let the clerk rush me into a decision. I saw some bruschetta that looked lovely for on top of the bread--$5.99 per pound, according to the little plastic sign sticking out of the bowl. I had no idea just how much a pound of bruschetta would be so I guessed.
"May I please have a half a pound of bruschetta," I asked the 20-something, pony-tailed clerk behind the deli counter, trying to smile and expect the best. He grunted in reply and started scooping bruschetta into a little plastic container. I knew I was going to get a second item but I also knew that, in the past, when I tried to list my entire order to the clerk, I was chastised for breaking another unwritten rule, I guess.

I dutifully waited until the clerk weighed the bruschetta, put the little label on the lid, and handed me my first item. "May I please have some of the healthy salad, too?" I asked, pointing at something that looked like coleslaw without the mayo and with a whole bunch of different veggies in it. The clerk looked up at me, like I had just asked him to give me his last pint of blood, exhaled audibly, and started to scoop regular, mayo-filled coleslaw into the second little plastic container.

"No," I said quickly, pointing at the item I wanted which was one bowl over from the one the was scooping from. He looked up at me again, sighed loudly again, dumped out the regular coleslaw, and leaned over to try to access the healthy salad that was in the bowl directly in front of where the slicer and scale were pressed up against his side of the glass case. He literally had to strain to reach the bowl for the healthy salad. Another deli clerk walked by, saw the first clerk reaching, and shook his head, like he felt sorry for the guy because I was such a pain in the butt on New Year's Eve.

I giggled nervously, caught the second clerk's eye and said, "Well they really shouldn't leave that slicer and scale in the way right there, should they?" He just looked at me, looked away and walked on, with absolutely no smile, nod, or anything.

So, I tried a second version of my inane comment, complete with a second burst of nervous giggling to the guy who was waiting on me. "Boy, that's a bad place to leave that stuff, huh?"

He looked up at me and just stared for a beat. Then he said, "We're closing early tonight and the slicer and the scale get put away here at night." He added, "It never fails, you take the spoons out, start putting stuff away, and someone wants something. It never fails."

I felt my face flush but said nothing. What could I say? "Sorry I broke the fricken deli rules again! You guys should issue a GD manual. Why can't a person just order what they fricken want and you give it to them with no attitude and no judgment!"

But I didn't say that. I didn't say anything. Instead, when the deli clerk handed me my weighed and labeled container of healthy salad, and muttered, "Happy New Year" I just muttered back, "You, too" and slinked away, as if I had done something terribly shameful.

So I ended 2007 in Deli Hell. Never again. I will no longer hide from the deli. I will no longer allow myself to be intimidated by meat-slicer-wielding young men on a power trip. I will stand in front of the deli counter, shoulders back, and say, loudly, clearly, and without apology, "One moment please. I'm still deciding."

I am woman, hear me order my sandwich meat.

Thursday, January 03, 2008

MS Bloggers Unite!

I love that I am not the only one writing about my journey with MS. By posting my blog address to various MS online support groups, I've connected with several other women who are coping/venting/healing/seeking acceptance via writing. It's funny. We share this common disease, but we are incredibly different. And, there is room for all of us!

On one blog (I'm not sure if it's public so I'm not listing the address here), I found this poem. It really spoke to me on this icy cold January day so I thought I would share it here.

Clear Eyes

To see the world with clear eyes,
To sense the night with all thoughts, all heart, wide open,
To be in one moment aware of all that surrounds.

As you walk the day draws to night.
A soft golden red glow fills the sky,burns the earth of all impurity.
Night draws you, breathless, into open arms and you willingly fall to its lure.
The path stretches ever on.

No turns to draw you away.
No cover to resist your sky hungry eyes.
Path need not be flat and borders need not be sure,
your feet carry you restlessly on.

The trees pull gracefully back revealing leaf strewn grass.
Lights burn bright and steady in the distance.
Released into the wild your heart soars and your mind is free to wander.
Feet carry you on.

This never ending road.
This journey.This eternal path.

Lydia Rodbourne
December 2007

Also worth mentioning, I am on day 3 with no sugar, I went to yoga class last night, and I feel great. I am successfully "changing the things I can" today. "Accepting the things I cannot change" isn't quite there yet, but the day isn't over.

Tuesday, January 01, 2008

First Day of a Brand New Year

Ken, Ruby, Zane, and I started 2008 with the First Day Hike at the Blue Hills. I've done this hike almost every year since Ruby was a baby in a pouch on my chest. Last year, it was really yucky weather so we didn't go.

When Ken and I went to pick up Ruby and Zane at John's house this morning, the snow was just starting to fall. The kids were bleary eyed and whiny after staying up until 1am. (I don't think I stayed up to ring in the new year until I was at least 12. Apparently that age has decreased to 4 and 8 at John's house. Grrr.) I think no one but me would have been disappointed if we bagged the First Day Hike this year, but I've become a bit superstitious. Last year, we didn't go on the hike and I was diagnosed with MS. Coincidence? Perhaps...perhaps not. I'm not taking any chances. I may have a chronic and progressive brain disease, but it could be worse. I could be struck down with female pattern baldness or a really nasty case of athlete's foot. Could you imagine? I'd have to start a blog about what it's like to accept having no hair and itchy feet and trying to focus on the positive. No thanks!

Back to today. So, we got to the Blue Hills, donned our snow pants, ski gloves, hats, etc. and hung out at with the free chicken noodle soup and the campfire until the hike started. We saw Yoga Teacher Nancy, old classmates from Ruby's first child care center, friends and neighbors, a barn owl, and petted a gazillion dogs.

The Houghton's Pond First Day Hike is actually 3 hikes of different levels of ability. All the hikes are led by rangers and volunteers. We do the family hike around Houghton's Pond. One of our rangers was a woman named Barb with a beard. Not like, "Boy she needs a waxing" beard. Ranger Barb had a little, groomed, grayish beard under her lip. I think this kind of goatee without the mustache beard is called a Van Dyke but I'm not sure. (Swear to God I am not kidding and/or making some homophobic slur!) I'm guessing Barb was transgender but I didn't ask. She was very friendly and seemed to enjoy watching Zane drag his stick until we took our 4th break in the first 1/4 mile and she walked on ahead.

The family hike is only about a mile long. I think it took us about an hour and a half to finish. There was snow, woods, beautiful views of the pond, games of I Spy, much whining, a piggy back ride, several angels in the snow, a bit of crabby snapping on my part (yelling-lite so I didn't COMPLETELY break my resolution on Day 1 of the new year), singing, a half-finished A to Z gratitude list, snowballs, and really, really fast descents down the snow-covered slide on the playground.

After our post-hike chicken noodle soup at the picnic tables, we went back to Ken's house to warm up. (Ken was the only one who didn't have snow pants and a waterproof hat for the hike and he was very cold and very wet.) When we got to Ken's, we put all the clothes in the dryer, turned on PBS Kids, and had a smorgasbord of snacks. Cookies, sorbet and sushi (the grownups' leftover New Year's Eve dinner), salami, juice, cheese, apples, chocolate--you name it, my kids ate it. Matt and his cousin Jimmy were there, too, although they spent most of the time we were there in Matt's room (although they were nice enough to let Zane come in when he repeatedly knocked on the door looking for Matt's light-up Spiderman mask).

All and all it was a fab New Years Day.