Monthly Archives: August 2012

Censoring

That word. It’s a tricky one. It means so many different things to so many different people. What some people believe should be censored, others call free speech.

Personally I don’t believe much should be censored. I believe in the freedom to express one’s self verbally. Or through writing, art, music and film in the way they believe helps them explain what they feel and think. So much is open to interpetation in so many different ways.

Only in some extreme instances where it may cause harm to someone physically do I believe censorship should be involved.

This week there were two instances of censoring that I became involved in. One is rather silly, at least to me, because it involves saying words that some may be offended by but a good portion of the population will shrug off. It did not stop me from getting into a war online with some people who took offense to my very opinionated view on the matter.

The other was a bit more personal.

It took me a very long time to be able to show my writing to people. To trust my gut and my mind, to be able to show everyone what I might have to offer. It began here with this blog.

I had zero problem letting people in to things that may be deeply personal for me. But when it comes to issues or history that involves other people I’m a bit more hesitant than normal.

I wrote a piece last weekend. One I toyed with for a couple days. If you remember from a piece I wrote last week about insomnia I recognized that something was toying with my mind. A memory of some sort. The more I had been writing the more these memories I had been hiding away for a while started to push free and escape.

One day late last week I figured out what it was that was truly bothering me. And I wrote about it. Only I wrote about it in a roundabout way that caused some problems with other people in my life. I didn’t go into as many details as I would have liked, because one of my biggest faults is not telling people when they make me angry or hurt me. I generally take it in further and further until it eventually boils over and I explode a jumbled mess.

Some of these things I put in the past to stay in the past. And they have.

However, there were some issues that were somewhat related to this past that I have never quite forgiven myself for. Namely that I was not a good parent back in this time.

I was good enough. But I was alone with a child with what felt like little support around me. I was experiencing all sorts of new things for ME. Not just this child, but those which were all mine. Something I hadn’t had happen in years. They weren’t all rosy. And as some of these experiences began to sour I emotionally retreated. Which wasn’t fair to my child. I was “there”, but just not in the way that I should have been. And I think we both suffered a lot  because of this.

Instead of writing about these details I skirted around them and instead focused on what caused me to retreat emotionally. Let’s just say I wish I had been a much stronger person back then, something which I am today.

I posted this piece very late at night(or early morning) and a few hours later upon awakening I decided to pull it. So I deleted it. It was too much for some close to me, and it was too much for me.

I don’t think I’ll ever truly write about those days again. I still beat myself up mentally every so often, something I’m working really hard to stop doing.  I can no longer try to convince myself of what I could have or should have done. I only try to concentrate on what I’m doing now with my kid, which has us both in a much better place.

I also don’t want to ever censor myself again. Although I know that somewhere down the line I will ruffle feathers of friends and family with things I may write, I may hurt or offend someone without realizing it. I think at some point or another all writers have had that happen, it happens when you really start digging deep down inside.

Staying safe to please everyone all the time does no one any good.

However, there are still things I won’t go into here just because I do have too many friends & family on the opposite side of the fence as me. And those relate to religion and politics. I have enough issues this time of year trying to be in the same room as my dad and us not battling over our views. I think when those conversations begin my husband starts silently mouthing “stop” to me over and over. He knows the conversation is never going to end up going anywhere good.

I’m not even going to go into details over the other issue I previously mentioned . It’s not worth  my energy anymore. I did however come up with a future character for a story because of that discussion.

Now,

The Good News:

After the breakthrough I started sleeping again. Full nights. I have all week. Except two nights ago when I waited up for J to come home from the city where he had played a show. I can never sleep until he’s home. So that meant I had 4 hrs of sleep because kid had to wake up so early for school. But yay, sleep!

My kids are in love with school. If you knew me last year then you know how horrible that year was for both of them. I’m not exaggerating, it was horrendous. I should be sainted after the crap I dealt with from her teacher and the numerous problems he had. I think I cried tears of joy on their last days because of how happy I was to see it all end.

So this year I was biting my nails wondering what would happen. C loves HS and so far so good, he has a great team working with him and he said the kids seem really nice so far. There was a minor teasing incident on the bus last week but the school was on it right away and the kid who did it felt horrible and made peace with C. I just don’t want a repeat of the last couple years. I don’t think either C or I can go through any of that again.

The brilliant part of all this is that the Dean told me they encourage kids who witness this stuff to report it. Which is how the dean got word of it. A kid on the bus saw it happen, told their mom and the MOM called the school to report the teasing incident.

I love this school.

Small fry has adjusted to all day school with no problem. She keeps waking up an hour early each morning excited to go to school. She’s met a couple of new kids and plays with her best friends at recess since she doesn’t have them in class this year. She absolutely loves first grade. It’s amazing. Also she refers to backups in the lunch line and the school lines as “kid traffic”. It’s really funny when she says it. And she LOVES her teacher this year, which is amazing. Last year she was convinced her teacher hated her and she found her frightening.  5 yr olds should not hate kindergarten, yet her teacher made that possible for my kid to do last year.

So I feel like this year could make up for last year. One more reason why I think I’ve slept all week.

This weekend I get to see two of my favorite dancers perform at a Cabaret club. I’m ecstatic about it. Well that and the fact that our sitter was a bit MIA this summer so this is the first time we’ve been able to go anywhere since spring. Alone. Yeesh.

Hopefully I’ll be back with pictures from that show. If I’m lucky!

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Back to Me

As sung by the wonderful Kevin Whelan of the wrens, I’m back to me.

First I started this blog after sitting on years of ideas and thoughts, not to mention major anxiety from holding in so much. And today I finally did something that I’ve wanted to do for years but didn’t have the balls to do.

I signed up for burlesque dance lessons. At the school of the one & only Michelle L’Amour, who is one of the worlds biggest burlesque stars and who is from, and still lives in, Chicago.

I’m excited. But I also felt the overwhelming desire to throw up after I hit the button that paid for my class. I haven’t danced in years. Unless you count my family room.

I know so many people have zero idea what’s involved in burlesque and may equate it with the strippers you see wearing absolutely nothing and sliding down a pole. This is NOT the same thing.

Burlesque as an art goes way back, with origins reaching into the Victorian age. Once it became popular in America in the late 1800’s and early 1900’s it was more of a cabaret act and while in it the women in these acts are not always fully clothed, there’s more of an innocence to the dances that are performed. It’s all about the tease, the peek-a-boo. It’s not the, overtly sexual desperation you come across in “gentleman’s clubs”.

Modern burlesque shows are carefully orchestrated and thought out. The women are glamorous and come in all shapes and sizes, which is one of my favorite things about it, it showcases that all women are beautiful how they are.

Burlesque shows involve drama, comedy, song and of course the women. Some even incorporate magicians. They’re really a celebration of the arts and the fantastic.

I first became fascinated by the art as a teenager. I can’t pinpoint exactly what made me fall in love with the idea of it, it may have been the movies I had seen or the books I had read. However, I found it extremely intriguing that women could be this free with their bodies and it was beautiful.

When I was in my early 20’s I finally had the chance to go to New Orleans, the city I had been dreaming about visiting since I was a kid, and when I was there I had the opportunity to take in two burlesque shows. They were electric, and my love for it was truly born.

Years passed of course and it was something I was always interested in. Keep in mind that most of my life I have been involved in either theater, dance or music so none of this is a complete surprise.

Dita Von Teese really helped bring the modern burlesque revival into the mainstream over the last ten years. And of course Michelle L’Amour. I had been dreaming about getting into the business for a long time but it really didn’t fit my stay-at home-mom status in the suburbs. If you know me, you know I’m not the normal suburban woman. Which is ok, I salute all moms from all over.

Last year we started going to some of the Chicago shows. There are so many different companies that sprung up, Chicago has truly become a driving force in the revival. There were a few dancers that stood out to me in these shows, dancers that had that energy, that spark. And I wanted to be like them. But I’m out in the suburbs.

It was after we went to see the Chicago Starlets(Michelle’s company) in december that I was just on fire. We had the luck of having front row seats, where I practically sat underneath Michelle as she MC’d the first half of the show. All I knew was I so badly wanted to be on that stage. I told my husband that night on the way home “I HAVE to do this”. And he understood.

Sadly I broke my toes around the time the winter classes were beginning so that was out of the question. Then the other health issues popped up in spring, and well summer’s just plain been a bitch.

I was feeling sorry for myself that I’ve never truly been able to pursue anything for ME. Josh has his music, his band.

A couple of weeks ago I was checking the events on a local company’s page. The two dancers that really made me want to do this? They were performing the same night with this company. Talk about luck! I called the husband and told him I’m getting a sitter and tickets and we’re going. And so we are. That’s next week. And I’m super excited about it.

I was looking at the local burlesque site, Chicago Burlesque, today and I had put on some music and just started working out routines to the songs. I stopped in the middle of one and said “Fuck this”. I texted J and said I’m booking a class.

It was time for me to stop saying I’m going to do something and actually do it. Life is short and I’m tired of setting aside my interests and dreams.

So I found the class I wanted and paid for it. It starts next month.

When Josh told me  today how proud of me he was for finally doing this, it made me tear up. It’s true, I don’t ever do anything for me. It was time.

I tweeted something today about taking my first class with Michelle’s company  and how excited and nauseous I was about it. A few hours later I saw that she came across it and told me not to worry I’ll be great. That made me smile like nothing else.

My goal is to get through the first course and keep going into the next, and the next.

I want to be up on that stage within a year with a company.

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The Insomniac Rises

I used to use that as my tagline for a dating site I was on oh so long ago when I was first divorced. You’d be surprised how many men thought that was interesting enough to contact me.

It was more than just a tagline, it was my life. About 11 years ago I started having problems sleeping. It was probably due to a lot stress. It lasted for about three months and eventually went away.

Then about a year later it came back with a vengeance. This was during some of my prime of going to shows a lot with friends, and writing anything & everything I could. I pretty much stopped sleeping period. Maybe an hour or two a night. At least once a week I had about 5. This went on for well over 7 months. It was horrible. I was also going through a stressful time with a relationship I was in. And trying to raise a young child.

It seemed the more I was writing the more I stopped sleeping. Granted back then a bit of a love for Bacardi & cigarettes at night really did not help matters.

I stopped drinking the bacardi & diet cokes. The relationship ended. I stopped writing. Things calmed down and life picked up again.

About a year later I was planning a wedding and the room in our new place, where we kept our computer, was a small, enclosed space. There were no windows. My writing became erratic and I became frustrated. Believe it or not the lacking of natural light was a big factor, I have this need to be able to look out a window when I’m writing. To watch the sky, the sun, the moon and whatever else is going on outside of there. A small, dark space just wasn’t working for me. I would try to work on projects that seemed to never take flight. Once again I was unable to sleep. Thankfully this lasted only a couple of months, and I was at least sleeping a few hours a night versus the one or two previously.

That was the last time I had this problem. It was 8 years ago.

However like the title suggests, the insomniac has risen.

It started a little less than a month ago when we were on vacation in new hampshire. We were up in the mountains, which was beyond beautiful as an experience This is that mountain. It was what I saw from the porch every day. It made me happy.

Now the problem began barely halfway through our week. I had no way to write up there. I don’t own a laptop, I hate typing on my cell phone to text so I sure as hell wasn’t going to try to post here through it. And I’ve become so accustomed to typing everything out, as my brain goes 100mph all the time so I have to, so when I would try to write things down by hand I’d forget half of it. So for a week I didn’t write.

And I stopped sleeping. I would toss and turn until about 3 am. Then I’d fall asleep. And then by 7 am my youngest and her two cousins took to running the halls of the house we were in , laughing and screaming their heads off. I was a bit of a crab that week.

When we got home I thought it would be better. But it wasn’t. I had a couple of days that I slept but not much. It didn’t help that we came home to the wretched heat and that made matters even worse because I felt like I was captive for most of the days with two kids who were bored silly.

I at least utilized those late hours to write. I admit I do love being able to stay up late when everyone else has gone to bed. It was just me, my headphones and the computer. And usually an insanely large glass of wine to the left of me. Which was often refilled once or twice.

I had several pieces going at once. I started posting them here on a rapid fire basis last week. But still, I wasn’t sleeping. Then there were two nights after I posted last week that I slept 9 freaking hours. And when I woke up in the morning I felt horrendous. Then I was back to 4 hours. The worst problem is that I’m a bit of a light sleeper so whenever J’s alarm went off each morning at 6 am I was up with him. I’m one of those people who cannot fall back asleep once they’re up. I would really like to stop being one of those people.

I would say that the writing again, this opening of the dam if you must, has been a blessing and a curse.

Over the weekend I stayed up to ungodly hours both nights. But at least I accomplished something each night. The following days however I was not fun to be around for my family. I have a tendency to withdraw when I’ve gone too long without sleep. I also have a tendency to talk too much. Which I know makes no sense, but trust me if you know me well it does.

Last night I decided I was giving my liver a break and my mind a break and decided no wine, and no writing. That did not help at all. After dealing with a mind-blowing migraine all day yesterday that had me on the couch for most of it, I felt better that night and decided to put myself to bed at a decent time with a book. After all I was actually tired.

It backfired. I tossed and turned until two. I did not however come down and write. I needed to give myself a break.

Today I came close to passing out while walking down the halls of my son’s high school, and again a short time later in the car. The world just started spinning. My lack of sleep means I’m trying to overcompensate with the kids once I am awake, and today like a couple of others this week I forgot to eat. So here it’s almost 1 and I’ve been up since 6 with about 4-5 hrs of horrible sleep under my belt and I forgot to feed myself. This was not good.

Luckily we made it home and once I ate I felt human again. It’s been raining here all day and that left all of us a bit under the weather. My daughter was content to draw all day and watch a movie. My son decided to come down with the worst cold ever two days before starting school. He sat on one end of the couch and I was on the other. He was watching tv. It was a bit after 3:30 when my daughter came in and woke me up. I fell asleep for a half hour on my end. I look over he’s asleep on his. The dog apparently decided at some point to join us in the middle.

I did feel a bit better once I slept but the headache is returning and after getting advice from a couple of friends I’m fairly certain my inability to sleep properly is just that my mind has opened up. Everything that I once repressed, all my thoughts and ideas, are now waiting in line to get out.

I’m guessing that if I take a night off of writing like I did last night, I’ll have worse nights sleeping then if I do actually write. So at least tonight, I wrote this.

Without wine and at a very reasonable hour. I’m exhausted. And my kids go back to school the day after tomorrow.

Wish me luck, I really need to get some sleep tonight in order to make it through this week. Because my late nights have to come to an end on the weekdays, which will be hard. My son has to be up at 5:30 am starting Wednesday, and I know this means I”m going to spend the first two weeks waking up when he does to get Mr.Crabby out the door on time.

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Summer is for Sadists.

At least that’s the way I see it.

I despise summer. I despise winter too for the most part, but winter brings Christmas, the first snowfall, the first blizzard(if you’re lucky, or not so lucky like those stranded by the one 18 months ago here in Chicago-Personally I was prepared and liked being stuck in the house for a couple of days), the first time ice skating with your kids(wait, I take that back. I don’t take my kids ice skating. I have the balance of a drunken frog). And in winter you can bundle up in layers and look good doing it. Oh, and you get to wear boots! I LOVE boots.

I used to wear boots in the summer when I was stupid and in my mid 20’s. Then someone I worked with pointed out to me that I’m going to end up with heat stroke, I laughed and called them silly, then I ended up drained one day and realized they may not have been that far off from the truth.

I didn’t always hate summer.

As a kid I was typical: Spent the summer at the pool, on my bike, at the park, and catching fireflies.  4th of July. I loved the 4th, I still do. When I was a kid my dad & brother would put on these amazing fireworks shows in our yard. Half the neighborhood would show up. The local police were so used to it they stopped fighting it and would show up to watch. Summer was fantastic. It was  a break from the monotony of being stuck inside of a school day in and day out with kids who hate you. It meant vacations with the family, lazy days sitting on my porch with a book(yeah I was that kid most of the time).

Then one summer it all turned sour. I’m not going into too many details on this one because frankly, they’re hazy. I do know that it was 4th of July, I was 11 and going into 5th grade.  We had company and my mom was spooning baked beans and something else onto my plate and onto the plates of the other kids at my table. She said something to me to the effect of “don’t you miss your father?”. I asked ” Is he on another business trip?”. Apparently that was the wrong question.  They had separated a couple of weeks prior, he had moved out a couple of weeks before. Only I didn’t realize that.

Now before I continue and before my father(and other family who are reading this right now) get upset, I have a weird recollection of my childhood and I know my dad traveled a lot. And maybe it was just that my parents  were really good at keeping their problems hidden from us younger two, but I must have missed the memo, they left me out of this decision to go their separate ways.

Summers after that were hit or miss.

The good ones were when Dad took me, sister, younger brother and my best friend Tracy to Elkhart Lake, Wisconsin. There was a place up there we went to almost every summer. Siebkens. Usually his then best friend B and his daughter accompanied us. Those car rides introduced my 12 yr old self to Rickie Lee Jones, ZZ Top and Todd Rundgren. Two out of the three remain musical/personal heroes of mine.

I still remain so incredibly fond of those trips, I remember all the freedom we had to roam all over the grounds of the hotel and lake. Swimming in the lake and B teasing me senseless that he was going to get Tommy Shaw of Styx to call me(he was the business manager of JY Young at the time so he could have, but he didn’t).

Over the years as a teen things weren’t always so happy. I retreated to my books and ventured out only because Tracey made me.

My brothers took to calling me “vampiress” because I hated the sun. Now this early hatred has benefited me greatly due to the fact that people think I’m at least ten yrs younger than I am. However at the time I just didn’t care to bake myself into oblivion.

Later over the years I didn’t think about it one way or another, I was too busy working and then raising a family.

Then one day I discovered a major reason as to why I hated summer: Bugs. Yes, bugs.

Ants. Centipedes. Wasps. Bees. Earwigs. Need I say more? I’m sure some of you out there may be squeamish by now.

When Charlie’s dad and I moved to this little house in Midland, Michigan we sadly discovered that the town was overrun by earwigs in late spring and summer. We found out just how bad the hard way when he left us in Chicago for a visit, arrived back home and opened the refrigerator. I remember the phone call of him screaming because about a hundred of them came flying out of there. Needless to say we found the best ways to prevent them the next summer, but it still left an indelible mark on me. I will recoil when I see one.

My other bug enemy: Ants. I experienced a childhood trauma that involved getting covered with ants from the neck down that still haunts me to this day. When we moved into this current house we discovered they liked to visit in the summer. Orkin is now on my speed dial. I have been known to cry hysterically if invaded. And I am SO not kidding about this. Thankfully my orkin man was briefed on my previous terrorization by them so he is super kind and tries to head them off at the pass at the beginning of summer.

My newest enemy are those nasty bastards that go by the name Wasps. With that name you would think they would be serving you brie and champagne, not holding you hostage in your house for three months.

After one summer of them dive bombing us every time we went into our backyard, Josh cut down all the gardens, especially the vegetable garden. It improved slightly last summer but still something was wrong. So this  summer I told him to be merciless. I felt awful about it, granted we didn’t plant the flowers, the previous residents had planted them, we just watch them grow every summer. But my kids can’t even go out back without screaming in fear because a wasp(or four) is chasing them. So I gave the whacking orders. 90% percent of all things that grow out back needed to be taken down.

Needless to say this has left me with a feeling of dread every time this season comes about.

The heat had been unbearable for most of this season. By the time I’m finishing this story it’s a balmy 75 here in Chicago. Needless to say I’m a very happy human being.

My ant problem was nothing this summer thanks to the wonderful foresight of Orkin dude. I thank you. No, I salute you!

Granted the wasps still make their way in here once in a while but at least you have assured me that they are only getting in due to the fact that my kids keep leaving the door open.

Right now I just want to deal with very bored kids. Thankfully school resumes this week. Thank you bizarre school district!

Summer is ending and a part of me would like to part with it with a fabulous memory. I can’t say I will. There are good things that happened(the mountains, my kids growing, my writing) but I would love to move onward into the fall. I love everything about fall.

And that will be another post, for another day.

J

 

 

 

 

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Twenty Years

It started out with an odd feeling in my legs when I was 18, and then again when I was 20. Sometimes they felt cold, a bit off. Then there were times I didn’t feel myself. I couldn’t put my finger on it.

As a child I had psychomotor(not somatic) seizures. They started when I was one and lasted until I was in my early teens. When I was about 13 I pulled myself off the medications. I just didn’t want to be on them anymore. And strangely enough I had less seizures. Only on a handful of occasions since have I had them.

When I now later had these odd symptoms I knew it wasn’t the same thing. This wasn’t my brain this was my body feeling off. I brushed it off for the most part.
I became a bit more suspicious when the woman who my dad sent me to for the once in a while acupressure session told me she felt a coldness, something dead, within my left leg and left arm. That was what I sometimes felt.

Fast forward about 4 years. I had been an assistant manager at a Pier One. I just turned 24, I had a fantastic boyfriend and I had great friends both at work and outside of. Life was great. Then while climbing a ladder at work to reach a table I fell backwards and hurt my back. I was sent to the ER and under Workman’s comp they ran several tests. My mom looked at me in the hospital and said “maybe it’s time to get that MRI”. So they ran one for safety precautions.

They found something odd. I was told to consult with a neurologist. We found one that had a good reputation and we went in. It was there that I was told that I had MS. I was floored. I’ve never been the person not to be in tune with their body and being the obsessive reader that I am, I research, research, research. I looked up my symptoms on that newfangled internet thing and that’s what I was coming up with. My being floored had less to do with being surprised I had the illness, it was more that I was right in diagnosing myself.

We had issues with this doctor and started going for second and third opinions. The first was at Northwestern with the same Neurologists that worked with me as a child. They gave me the second diagnosis. Yup, still the same. A few months later we decided to go see the famed Dr. Tony Reder at UIC and he performed a few tests including the dreaded bladder test and he agreed with that initial diagnosis.

Now at this time they said it was still very mild. I may never progress very far. The most problems I would endure would be some weakness and fatigue. And they were right. For about 8 years.

It for the most part had followed the part of relapsing remitting. The mildest form of MS.

I was 32. I had been divorced two years and the primary parent to my 5 yr old son for a couple years. And it wasn’t easy. I also worked for my family’s company, a successful building and development corporation. They gave me a condo in one of their developments that was across the street from their main office where I worked for a few years as the front desk secretary/administrative slave(dad, I’m kidding). It was June of 2003(It’s 11:30 at night and my husband informs me I wrote 93 earlier. Which would have made him 14 and our eventual relationship months later terribly wrong), and I had messed up badly at work. I mean super bad. Some personal issues I was dealing with managed to come between me and the job. I was fired. For a week. It was horrible. Having your family fire you is up there on the crappiest thing you can experience scale.

I groveled and they let me come back.

My first day back I was ok but I must have been holding on to a lot of stress and trying to put forth a brave face for most of the day. Which I do often. And it backfires. This day it backfired hard. I went home for lunch.

However as I exited the elevator to my floor it all went terribly wrong. Suddenly everything in front of me started to blur until it went black. I could not see a thing. I managed to get myself to the left wall in the hallway and make it to my place. Thankfully it was a short hallway with few units. I had my phone in hand and managed to find the keys in the darkness to call my dad. I made it inside and sat down crying, explaining to him what had happened. As I sat there in shock he made it over to me and sat with me until things slowly came back into focus. Once I stopped hysterically crying I called my Dr. I really liked this man and he was upfront and sarcastic. Something I like in a person. We also hit it off and he always to this day thought of me as an enigma.

I went to see him a couple of days later and he ordered an MRI. The night before the MRI I was with my then boyfriend M at a Wire concert at Abbey Pub. I think I lost most of my hearing that night. I remember that the next day the technicians asked me if I’d be ok with the noise, and I laughed and said after seeing Wire in concert the noises would be about the same. They really were. And to this day when I get an MRI I just equate the noise to that show, it helps me through it.

A few short days after the MRI Dr. McCoyd called to give me the results. He said yes there were two more small, very small lesions on my brain. But the thing that gave him pause was that it showed that my brain was shrinking. I was in the parking lot of my building and I sort of just sunk to the ground when he said this. Now he went on to explain that this wasn’t uncommon with MS and not to worry too much. Easier said than done. You don’t tell someone their brain is shrinking and then expect them to move along.

I’m a writer. A thinker. A lover of words, books, art and film. Music. I need something that moves me in front of me at all times. There were so many things I wanted to do. My lifelong dream was to write a book, have it sell and be famous. Today I’d settle for 20 people reading this post and commenting on it. I have low expectations these days.

Dr. M put me on Avonex. Now this is where this piece will get tricky, and I may piss off a few people. People who have MS or people who have loved ones with MS.

I don’t like the MS medications. I went on the Avonex for a few months. I made M give me the injections. We had the nurse come and show us how. Now I know he’s reading this and won’t object to the following- we didn’t have the most stable relationship and I’m fairly certain my forcing him to give me the avonex for a while did not help matters. For the record we made better friends then anything and we still are all these years later.

The Avonex felt like death. The next two days I felt like I had the worst flu of my life. The two days after that while I physically felt better I noticed I felt a bit unhinged mentally. And this kept going for a while. I fought with M endlessly.

I would start skipping a week here and there to give myself a rest. It was taking a major toll on me. Within weeks M and I split up. That was inevitable. Like I said, we were better off as friends.

Within that time I met my now husband. I kept going a few weeks more with the Avonex but just could not take it anymore and I stopped.

I felt better. Then Charlie had his first breakdown. He was six. I stayed strong while he was in the hospital but within 36 hrs of him being out I started suffering severe anxiety attacks. Something I’d never had. My body gave up on me once again. I barely made it through.

Less than a month after that Josh decided he wanted to deal with me, my son and our problems and become part of our family. So 4 1/2 months after dating we got engaged. Ten months later we were married. However within that time I was back on the avonex for a short while. Once again I lasted as long as I could and quit. The side effects to me were worse than the MS.

Within four weeks of marriage I had another major flare. It was thanksgiving weekend and I ended up in my dr’s partner’s office. It was a Saturday. The guy prescribed prednisone for me. Only he gave me about three times the amount and within days I not only looked like a giant moon but I was a bitch on wheels. I was horrible. I fought with everyone near and dear to me and caused a friendship I held dear to implode for several months. It felt awful.

I was fine for a long time after that. About a year later we found out Esme was coming. Everything was progressing smoothly. It was a few months after she was born that I started having little problems here and there. I couldn’t walk one day. I got up and my leg went out. Thank god she wasn’t in my arms. My hands would tremor.

I kept going because there was nothing more I could do. But there were noticeable differences.

We moved from our high rise in the city to a two flat in OP Where to get from car to door I had to walk up three flights of stairs each day with infant/toddler in tow. Within a year it hurt me. My legs while feeling stronger in some ways felt weaker in others. They were slower.

One day while walking down from our attic bedroom with Esme in my arms my leg fell out from beneath me and I slid down fifteen stairs. My left leg twisted under me and I sprained my leg and ankle. Three months later I stood up and passed out for 30 seconds. Josh rushed home and I was admitted to the hospital for the night. The doctor expressed his concern that things were maybe getting a bit worse.

However I fought him saying I would never go back on the medications. Too many stories of people who had taken them ending up with worse symptoms, people who then would get prescribed drug upon drug for symptoms that were causing more symptoms of something else. It was a vicious cycle to me.

After this I would say things blur a little for me. Life went on. Too much going on with Charlie and raising a toddler. We eventually bought a house in another suburb and settled in.

After we moved little things kept happening. I would lose feeling in my arm. Then a leg. My eye would blur. I felt like my brain moved slower.

Eventually I found a new doctor, I really like her. She said yes the lesions are there, one more then my last MRI with Dr. M. She understood why I didn’t want to take the meds and said while my flares are occurring more than they used to, I hopefully would never progress much more considering how many years have gone by. Usually people were much worse off by 20 yrs or they would stay as they were. I was never sure whether or not to be comforted by those words.

I haven’t seen her in over a year. Not because I don’t want to but because I have a tendency to try and push aside the illness. I’ve never been one to use it for pity. I’ve never had a fatalist attitude about it. It’s there. There’s nothing I can do about it as far as I’m concerned. I don’t look at it like a death sentence.

Then this year happened. Last November C was in the hospital again. Outpatient for two weeks. But it was rough. And once again it happened before a holiday. He was done three days before Thanksgiving. Once again I decided to be as strong as I could be. Then I went to my in-laws for the holiday. Thanksgiving morning I went to get up and couldn’t. My legs were gone. I whimpered and shook Josh awake. I knew what was happening. I couldn’t move them. They were dead. He’s always been good in dealing with me when this happens. He knew that they would take their time and let me stay in bed. A couple hours later I could at least move. But for the rest of the weekend I moved slowly. I felt like a truck ran over me. I could barely go up and down the stairs of his parents house. And the downstairs is where everyone spent most of their time. If I went down, I wasn’t coming up for a few hours. By Saturday I was ok. I drank a little too much wine that night. And for a few days after we were back I was fine.

It was Friday and I was driving our dog to day camp. Yes doggy day camp. I hadn’t had a lot to eat and just ate a banana and drank some water before we left. It was around 9 am and the kids were in school. I was on the road when my normally car loving dog started crying in the backseat, I tried to calm her when I felt it. My insides constricted it felt like someone was trying to tear my ribs out, everything in front of me was starting to go black and fuzzy, I couldn’t breathe. My arms & hands were tremoring. I thought I was going to die and I hunched over the steering wheel trying as hard as I could to find the closest parking lot. I found the McDonalds parking lot and pulled in. Things relaxed a bit but I thought I would pass out, my left arm was shaking like nothing else. I couldn’t see straight. I called my dr’s office and they suggested I go to the ER. I talked to the nurse for a while and she agreed it could be my MS not a heart attack. I called Josh. He took off from work immediately. The Dr called back and said to just call an ambulance from where I was, I actually laughed and said I couldn’t because I had my giant dog in the car with me. I told her I would try and drive my dog home. And I did. I was ok. But I got home and felt like I was run over. My legs felt like dead weight.

That weekend I could barely walk. Every time I got up and moved around everything felt like it would spin out around me. I spent most of the weekend on the couch. Our dog and cats took turns curling up next to me.

A few days later I felt better and I was ok. But after that everything felt slower again. I was experiencing brain fog worse than ever before. Words I knew before would trip on my tongue. I swear I forgot how to spell. I started dropping things a lot. I broke a couple glasses. I used to be able to type 90wpm. Now my hands trip up and falter on the keyboards. This part kills me more then you could ever imagine.

Then in January I tripped and broke two toes. One worse than the other. The littlest healed immediately. The other one took nearly three months to heal and kept worsening and I was stuck in a boot for eternity. This did not help my mobility issues.

Once I was out we celebrated by taking the kids to the Dells for a day and night. It was spring break. However you were in and out of hot & cold situations nonstop. The walk from our room to the water parks and the restaurants/game rooms was the equivalent of over a mile. I felt horrible that night and barely slept. The next day, even worse. On the way home things were fine. Then halfway home it hit again. The same thing as November. It was the MS hug, it attacked my ribcage, I couldn’t breathe, feel or see. I freaked out, Josh was annoyed and somewhere in Wisconsin we had to pull off the highway.

I’d had another flare. They were getting closer together. This hadn’t happened before.

After that I decided to slow down. I stopped volunteering so much for my kids schools. I said no. I wanted to take it easy.

But the depression and anxiety were taking hold. I was angry all the time. I could feel it building like a volcano. I would cry over everything. This wasn’t supposed to be happening yet.

I already had horrible seeing problems. My peripheral is a mess. I can’t drive at night and forget driving on expressways. Which means my social life has been impossible the last few years.

I was finally angry as all hell at this maddening illness.

However one thing I will never waver on is taking the medications. From my experiences and those from an ever growing crowd of longtime MS patients that I’ve come across on the web, the meds can be more damaging long-term then they are helpful. Then just recently the findings came out against some of the beta interferons and how they aren’t treating people properly. That they aren’t as effective as first thought.

I’m not the same person I was a year ago. I take things in stride. I’ve made really good friends who make me laugh and who make each day go by easier, I’ve learned to let a lot of the old problems go. I’ve learned to relax and try not to be perfect.

This summer has been rough for me. The heat has knocked me down something fierce. Which isn’t surprising considering that Chicago had been in the high 90’s-100’s for nearly two months straight with few if any days of relief.

I feel for my kids as I couldn’t be the mother they would have liked to have this summer. I couldn’t take them to the beach or the pool. I couldn’t take my daughter to the park. Going outside in anything more than 85 is painful for me. And 98 every day? I was lucky to walk those days. Some nights I didn’t sleep. My legs were in pain from the heat and humidity. If I had to run errands that day it meant that I would cry all night while my legs ached restlessly.

It really pulled me down. Twice I lost/walked away from my purse in stores in one week. Nothing was stolen but it showed how bad the brain fog had affected me. My hands didn’t function. Sometimes I felt like things in front of me were hard to attain. This was honestly a hard summer.

The heat has abated. Today it was 75 and windy. I wore jeans. Tomorrow it’s 74. Next week low 80’s. I’m ok.

In all of this I learned a few things about myself: I have faults. And I need to start living again. To stop being so safe like I have the last few years.

It’s been twenty years since this disease really started to take a hold of me. 18 since the initial diagnosis. I’ll be 42 next month and I have yet to really live out my lifelong dream of writing professionally.

I lost so much confidence in my ability over the years due to this.

I started again because my friend Erin and Josh sat me down one night and told me I had to or I’d regret it. So I started this blog. And the more I wrote the more I realized I had so much inside of me aching to get out.

So I’m going to keep writing. My heart and mind are open now.

And I might try and take those burlesque classes I keep threatening to take. I used to dance, I’m still pretty good. I want to put these legs to the best use I can before one day I can’t. You only live once.

I may one day go on the medications, but only if things become unmanageable. Who knows. I know that after this summer I’m going back to see my Dr this fall. It’s time.

However I’ll never stop living my life. And I’ll never let the MS get the best of me. I may some days never be the same physically, but on the inside I promise not to change.

Jen

P.S. This is dedicated to so many people who have been with me through this all these years. Old and new friends/family. If it weren’t for all of you I wouldn’t have made it this far. Thanks. I love you .

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Teenage Boys are weird

I love my kid. He’s a massive pain in the ass sometimes and has destroyed many parts of my house(walls I’m looking at you), has run up our wireless bill, and our water bill. But I love him.

For all purposes he’s a normal kid. He has mild aspergers and ADHD/Anxiety issues. I call it the Triple A. I know, that’s extremely unoriginal.

I will say the kid has grown to be a good-looking kid, and I’m not just saying this as his mother. Many people tell me this. And the fact that when he’s out with me and girls who don’t know him from school turn to watch him go by, that reaffirms it. Of course, he’s oblivious. Which I suppose in some ways is great. It means I have less of a chance of becoming a grandmother before I turn 45.

However there are times I think the kid’s brains are located where he sits.

Prime example:

Today I take him for HS registration(I’m not even going to DISCUSS the schedule mess up, that’s still a flaming mess) and after I finally manage to find us parking after going around the confusing circle in front of his school four times, we head up towards the door. He takes off and does his best impersonation of Queen Elizabeth II. Meaning I’m Prince Phillip and walking 15 feet behind him.

As I’m curtly saying goodbye on the phone to his former Vice Principal-still trying to straighten out the mess- I see a cute blonde in a skimpy tank top and short, white shorts scream ” CHARLIE!!!!”

This little girl suddenly runs and hurls herself onto my son, who looks as if he’s been presented with an exploding volcano rather than a cute, teenage girl. He reluctantly hugs her and THEN I see the smile. Ah HA!!

I hang back and wait til this awkward exchange is done and she saunters off to see her friends. We walk  through the door, grab his info packet and move forward down the halls of his mammoth high school.

I turn to him and ask ” Soo who was the girl who just hugged you??”

His response” I really don’t know. She went to school with me but I don’t know who she was”.

(Now imagine the sound of me smacking my head against a wall. I didn’t but I wanted to).

We proceed as normal for a while. Every so often his head swirls when some young girl with short shorts walks past him(this trend has to die. I grew up in the 70’s & 80’s and I didn’t wear them THIS short).

About a half hour later he turns to me and says “Jessica. I think that’s her name”

Ladies and gentlemen, no one said teenage boys were the most intelligent people on the planet.

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It Must be Tuesday

Bah.

I promised so many wonderful things and this is all you get. If I had a proper laptop with me while in the mountains I would have published the three things I was writing, but by mid last week I decided they outlived their relevancy so I scrapped them. This left me with nothing.

Last week I was also dealing with the come down from traveling and getting my life & house back in order. I made my kids run a million errands. The heat was unbearable again so I damn near held them hostage in the house all week. My husband worked long hours and I was pissy.

To be honest I don’t remember a lot of last week. Most of our plans fell through. And I started watching the calendar with a crazy amount of glee.

The kids go back to school in a week. Yes, a week. We’re crazy here in the suburbs of Chicago. That’s ok with me, I’m done with summer and my kids are bored with me and each other. Today I considered selling them on Ebay quite a few times. The teenager was such a thrill to be around and the 6 yr old found it her duty to scream like a C horror movie actress at every and any chance she could get today. It was just plain awesome. And I even took the little monsters to the local beach(man-made pool that probably every local kid has peed in at some point this summer).

I’m supposed to be up in bed right now but that isn’t happening. I was sidetracked by “this”. I have my son’s HS registration tomorrow. Where I’m going to go in fuming because I dropped the ball and didn’t read his schedule properly when it was sent to me two months ago. Yes, so I’m going to be the asshole tomorrow. See, how was I to know(unless I dig out the long ago stuffed in a drawer course book) that they stuck my kid with ADHD & Aspergers, but who is fully functioning, in all special ed classes despite my calls and our meetings with them arranging he only be in two. Hmmm. So of COURSE I figure this out tonight and have to arrange to have the 6 yr old to hang with her friends tomorrow so I don’t drag her easily irritated self with me while I calmly(snort) discuss(steam) over this with the people at the school tomorrow. Deep breaths, Deep breaths. This is partially my fault, but honestly unless you have the course book nearby(mine was stuffed in a drawer under a million pieces of paper for three months)you could be signing off on anything.

So here we are. Tomorrow will be fun. My kid already thinks I’m a badass. Seriously, he does. He not only thinks I’m the funniest person alive(well I do have a flair for the sarcasm) but also that I’m pretty tough when I need to be. Sounds pretty good to me.

Oh, and I stopped drinking on sunday! Figured I’d give up wine for a few days. Then I started getting awful headaches the last three and decided just maybe the lack of wine was the reason. Is that not sad or what? So I gave in tonight. So yeah, it must be Tuesday. And a cat just walked in front of my monitor because he still thinks it’s ok to climb on the desk while I’m writing. He’s lucky I love him because many of these words almost turned out wrong. Nah, who am I kidding. I can type in the dark if need be.

Other notable things that happened in the last week:

  • Took my kid and her friend to the movies saturday. Brave. Kid has seen it before, didn’t flinch. A half hour until the end I had my kid in my lap screaming and her friend clinging to me for dear life. I had to laugh. During this time I check the radar on my phone because I knew a storm was coming in. I look and it was almost on top of us. We had 30 minutes left to the end, if that. I can’t drive in storms. Rain yes, storms no fucking way. So I’m texting my friend Jess to ask her if it’s coming in, and notice her texting at the same time(cue Twilight zone music). She tells me it’s getting scary out before I can ask if it is. She tells me if it starts to come down she’ll come get us(her kid is part of that us). I kind of ask if her husband can come so my car doesn’t spend the night in the parking lot of the cheap theater. Of course she says. 15 minutes later we walk out to a pitch black sky and rain/wind arriving in a fashion that calls to mind a hurricane. If you heard of the storms in Chicago saturday, yeah this was that storm. Jess and her husband showed up 10 minutes later and she drove my car & us and he drove theirs. By the time we were three blocks from home it ended. All I have to say about this is that I love having good friends out here and one who can damn near read my mind. Took me a while to meet some people who I really clicked with, and once I did I was grateful. You know who you are.
  • I won’t be a snob and say I never watch tv. Hell one of my dream jobs is to be a Tv Critic. I hate however when I pass over a new show and then one day get the dvd and discover it was one of the best shows I’ve seen in a while. The past 24 hrs I just plowed through the first season of Scandal. Soo damn good. So damn good. I honestly can’t wait until season 2 next month. And I love seeing Joshua Malina on my screen. I had a crush on him when he was on Sports Night, The American President, West Wing, and anything else Sorkin has made probably. I know Sorkin didn’t make this, but still. I have a weakness for the kind of geeky type, I have ever since high school. And Josh Malina fits that description.
  • I love Burlesque. Yes I do. And no it’s not the same as stripping so shush. I love the glamour, the comedy and how dedicated the dancers are. Most of the ladies are artists/writers/comediennes/designers. There’s no dancing around a pole. The performances are very thought out, drawn out and the art goes way back folks. And it’s made a huge comeback in the last 10 years or so. I’ve been appreciative of it since I was a teen. Lately, just plain obsessed. We haven’t been to a show since Christmas time. And we’re going to one in late August because two local artists/dancers who I’ve come to admire, who’ve inspired me to want to learn the art, are performing the same night. Can I say the minute my babysitter said yes to working that night I did a happy dance? I did. I cannot wait. And who knows. Maybe this winter I’ll take my lame ass and sign up for that class with Michelle L’Amour’s studio like I keep threatening to do.

;

Ok, my cat won’t stay away from my screen. He’s waiting for me to go to bed. And I think I should.

Goodnight.

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