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The Simple Story

The adventure has begun. It began ten days ago on a sunday evening.

The little blue and white pills sat in their little black case waiting for me. The deal was that I would take them & they would slow down some of the symptoms and flares that had been taking place for a while. A long while. Way too long.

I stared it down. It didn’t move. It mocked me. I did what all the lovely people on the support group page told me to do. Take the 1 aspirin, eat, wait a little while, then take it with a lot of water. Enough water to keep a camel happy for a year. And I did most of that. Except take the pill part. Instead I stood there putting it in my mouth, taking it out, putting it in, taking it out. I was nervous. Terrified. I knew how much life would change. Then my 6 1/2 yr old piped up and told me to just take it “Do it for your health”. Who can argue with that? So I took it. And waited. For anything & everything. I was nervous so I walked around a bit. Cleaned a little. Then I remembered The Tonys were on and that took some of the worry away from me. Damn, Neil Patrick Harris should host all awards shows from now on. I really hope Tim Minchin wins a boatload of awards for Matilda. These thoughts kept me preoccupied. Then slowly but surely I was getting warmer. I couldn’t figure out what was up. I kept looking at the air conditioning system and adjusting it. Hmm It was 72. Why am I so hot? Took off my t-shirt & threw on a tank top. Husband & I sat down to watch Mad Men.

A short time later I was burning. The skin on my arms and chest were bright red & blotchy. It hurt. It was absolutely horrible, this was a worse feeling then giving birth. Which sounds silly but it was. I kept jumping up and down making these pitiful whining noises. A red rash popped up all over my arms, chest & legs. It hurt to walk. The feeling of fabric against my legs was torture. My husband tried to calm me down but that seemed to make matters worse, as I was in a heightened state. I quickly grabbed a wet towel and applied it everywhere. That seemed to take some of the stinging feeling away. I guzzled 5 glasses of water & took to the boards to the support group for advice. Thankfully the advice was much of what I was doing. Drinking 8 glasses of water seemed to bring it all down. Within an hour the flushing had subsided, however my legs still felt prickly & would remain so through most of the night.

This was my first dose. The next day went fine. Morning & evening went off without a hitch. No side effects. However tuesday morning was a different story. I took the medication & within 2 hrs I could feel something. I was a little dizzy, felt a little tired. More then normal. I was getting ready to take the kids to the local mall. I had promised them, they were excited to go use some gift cards. But within a mile from home I sensed the change. I was dizzier, and my eyes felt like rocks. My body suddenly felt like a paperweight. I could barely stay awake or feel anything. I made it another quarter mile to the local McDonald’s and grabbed food. Pulled over and the kids ate. I started tremoring. My left arm. Always my left arm. I argued with my mother who told me that it would pass. But I was terrified. I took a deep breath and decided to turn around and go home. I made it home and immediately came in and climbed upon the couch. I was tired. Oh so tired. I drank a huge diet coke to try and get some caffeine in my system. It’s not the best choice but I knew it would help me stay awake. Thankfully C is old enough to watch over his sister so I could try and get back to me. I did eventually feel ok. I had a second wind late at night with the night dose.

Which made me wonder if there was something to the way I was taking them. The first dose was a night dose & I had some energy with it. Morning doses seemed to make me a little sleepy, rinse lather & repeat. This went on the next day. And the following day thursday was the worst. I could barely function. It started with an argument with my contractor who basically went back on most of his word regarding fixing a huge issue his former company caused & screamed at me on the phone(my husband is still planning on dealing with him soon for that one). I was shaking. Then a family issue that had been going on was giving me such stress that my mother finally forbid my sister to talk to me about it & said that she wouldn’t talk to me about it either until things settled. I was that much of a mess.

It was by early afternoon when she called to check on me again & I could barely lift my head to the phone, and my words were slurring as if I drank a bottle of whiskey my mom knew something was wrong. She came and picked up E. She had her stay with her until J could pick her up on his way home from work. She even sent my stepfather over with a pizza for me and C. During this time I took to the phone and called my neuro. I told the nurse what was happening and when the Doctor called me back a short time later she said to just take one pill a day at night from here on out. Even when the dosage goes up to the 240. I did as she said and the next day I felt myself. I even made it to the mall with the kids. They had the best day. I even overcame my fear of drinking with this med thanks to some encouragement my by new friends in the group who were experts on the matter, and felt just fine. In fact the pill seems to go down better when an hour later you follow it up with a glass of wine.

This week I’ve been fine with the medication. Which is a far cry from my days with Avonex. I officially apologize to my husband Josh & to my ex/friend Matt for everything I put them through when they had to administer that bitch of a drug to me, and the anger I exploded with days following due to the horrendous side effects. I wish this pill had been around back then. Thankfully Josh , unless the 240 does a number on me down the line, you’re a very lucky man. Thanks for sticking around through this all. I know I give you options sometimes, but you never take me up on them. I love you for that.

I know I always said I would never go on these drugs. Or at least never give them a chance again. I’ve had some pretty strong things to say about them. And while things are going well with this oral drug, I’m still having reservations. With the rate my eyes are having problems(and for a writer, losing the ability to see is up there with death), I know I had very little choice. It’s been 25 years for me. And I’ve come off lightly compared to so many I’ve come to know and care about. There are just times I don’t want to put my body through the push and pull of the medications. However, if this keeps going the way it has then I’ll keep going. I want to see my kids grow up, and being the tough broad I am, I’m not giving up now. I’m going to stick around for another 40 or so years. That’s my goal. And I don’t give up, or let go, easily.

Before I go, I must say thank you to my new friends from this group. They’ve really helped me through the last two weeks. If it weren’t for them I may have chickened out and not taken the damn pill. Plus I’ve realized it’s nice to know that there are others out there who feel the way I do, and I’m glad to have them as my friends, current and future.


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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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