Shake the Disease

It’s been a while. I’m sorry.

No, I’m not. Life has been a whirlwind of emotion, illness, and not wanting to talk to people.

Since the last post one child has started Middle School, the other(the one with Aspergers)has finally had the chance to learn a skill and move forward in their job thanks to an amazing new boss, and I’ve dealt with a very close family member go through surgery due to cancer.

It’s been a hell of a month. We’ve had our good moments(took the kids to their first Comic Con-which incidentally was my first as well and oh my god I saw Alex Kingston and Jenna Coleman from a distance), My anime obsessed daughter got to meet and take a photo with one of her favorite anime voice actors(his assistant was just divine and I wish I could thank her for fixing what could have been a bad situation, with grace).

I’ve sat here on so many stories. I’ve sat here thinking about what life would be like if I could redo age 9 on up. Part of me has been paralyzed with fear. I’ve tried writing but the words get muddled. I blame the MS sometimes. But I know this is a horrible excuse.

One of the things I swore when I was first diagnosed over 23 years ago(symptoms started 4 before this and suspected by a doctor) was that I wasn’t going to let it interfere in my life. Yet, here we are.

I’m tired all the time. Except for the times I ingest caffeine. I quit caffeinated coffee 13 some years ago. Two months before my wedding. I had been having severe panic attacks and I didn’t know what they were. After several hours in the ER(where after not being seen for 4 I finally turned to J and said “Lets go home”-I’m surprised he still married me) the Doctor I saw two days later told me my intake was a contributor and go turkey. So of course this two pot a day for 16 years person suddenly gained 10 lbs before their wedding. A first according to the woman who was fitting my 30’s inspired wedding dress. She did not like me.

Let me go back, I have my moments. This disease. This illness. It’s not a disease. You can’t catch it.

I don’t like myself. I hate myself often. I hate myself for not following through on my dreams. I’ve wanted to be a published writer. Ever since I could hold a pencil and wrote my first stories in grade school. Yet, I let the emotional and health difficulties get in the way and take me down. I’ve let the issues with my children and my own self-esteem tear me apart. I’ve let this illness bring me down.

I see other friends talk about how much writing they’ve accomplished each day and I find myself incredulous and angry. Jealous. I hope for a couple hours every two weeks. It’s what I can deal with when my brain is coping in good months. In bad months, with the responsibilities and the anxiety/depression I already I deal with, I give myself no deadline. It’s what I can do when I can do it.





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Hello, It’s Me

This is just a brief hello. A hey, I've been away for three weeks and I'm sorry.

I was on vacation. With my husband's family. Out East. For ten days. It was interesting. It was a wonderful trip, don't get me wrong. It's just stressful to be with 9 other people in one house for a long period of time. Especially when you're introvert personified.

I have so much to say. So much to tell you. Both of my kids have had birthdays. One is a year shy of 21. One heading into Junior High in two weeks. I've had a lot of personal breakthroughs the last two or so weeks. Some of which I can't explain. They've just happened.

I saw and experienced things. Let myself try to be happy when I was out east. We were in Maine for a week and apparently Maine agrees with me. I'd never been there before until last week.

Last night I had the chance to finally, FINALLY, see one of my absolute favorite singer/artists ever. A long story short: Nearly 17 years of trying to get tickets to his shows has resulted with each and every one sold out within minutes. Some I couldn't attempt due to oh, maybe childbirth. But hey, this time I lucked out and it was one of those times my husband said "Get them, we'll figure out who takes the kid later" situations. And that day, I lucked out. Last night I saw him. He closed with my favorite song in the world. The one song that turns me into a weeping, freaking mess. The spouse turned to me when it started and said "You're so happy, aren't you?" I was. It made my freaking world last night.

The story I've been working on for two years. The one I've come back to off and on, that upsets me, I based the main male character on a combination of a couple different artists I've admired. He's one of them. Last night made me realize I need to rewrite some things. Though this has been a suspicion for a while now. There are parts I'm no longer comfortable with. At times I want to scrap the whole damn thing and rewrite it. It frightens me because I have about 20K words written. Maybe more. Again, I've been trying to work on research for another project so I've forsaken this one. Though, personally, it means more to me. Which maybe, is why I don't give it more of my time.

It frightens me. It's too close to me.

I'm going to stop here. It's been a long couple weeks. Especially a long two days and I need sleep. I just didn't want to keep this page so quiet.

I'll explain the rest in the next few days.


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Some days, that’s what I feel like doing.

Just taking off to places unknown. Where no one knows me. Where perhaps I could start over my life. Taking the fewest belongings and running.


Every time I think of this, every time this desire to move or to run has come over me these days(especially these days, because earlier days I came really close to just running) I’ve come to the conclusion that whatever it is I’m trying to run away from is going to follow me.

I constantly want to move away from every town I’m in the last twenty years. I figure that if I keep going, if I find this so-called utopia that exists in the back of my mind all would be ok, my pain and my problems would all disappear.

Then I grew up. Or rather I figured it out. I’ve been trying to escape the pain for so long that I’ve thought that running would fix it. A change of place. New people. However, that doesn’t change that just maybe I’m still me. I have some friends. Some they come and go. I can’t seem to keep them for long. Or I keep them as if they were in the back of my pockets and only taken out when needed. Only it’s me that they don’t need.

I’m still the me with the same desires. The same fears. The same tragedies from the past holding me down mentally and often physically. I fall into bad patterns and can’t seem to crawl myself out from under them. For years I ignored them and figured it was just the pain seeping through and all I could do was push them aside, these patterns, try to find a way to muddle through. Be it through cigarettes and alcohol, or through one bad relationship after another.

Part of my reason for writing this is that I feel alone. Don’t we all. We all always feel alone. I have friends who have literally disappeared. Some I’ve grown apart from. Our ideals no longer match, and that’s hard to realize and accept. Others, they just decide they want nothing to do with you because you no longer fit what they need. You aren’t good enough perhaps. I don’t know. I try with others so often that I’ve come to the point of rejection that I’ve decided I won’t try anymore with anyone.

I had so many dreams growing up. The earliest of course being that I wanted to become a successful writer. After that, actress, forensic psychologist and salon owner fell into place one behind the other. The writing was part of me, it became ingrained in me from a young age when I taught myself how to read at a very young age out of determination and jealousy that my older siblings could go off to school and I couldn’t. From there, as my mother would recount, was when I fell in love with the written word. When even the smell of books would makes me happy. It still does to this day.

Books were my escape as a child and even now. When things become unbearable I know that I have different lives that aren’t mine to escape into. Both fiction and non-fiction.

To go back to where I started with this however, I’ve come to a point where I’ve realized that I can’t run away. I wish I could. I wish sometimes I could pack up my kids, my cats and dog, my husband and my many books, and just go. Anywhere.

I’ve yet to find a town that understands me. It could be turned around that I’ve given nowhere a chance.  I’ve given everywhere a chance. Everywhere just hasn’t given me a chance to be who I am.

I’m going to turn back to writing. I have a book I’ve been writing off and on for about two years. About a woman and her experiences with MS but, there’s a twist, a couple twists and it’s not what you’d expect. There have been few to no books or movies/shows that have dealt with MS and I think it’s time.

I need to refocus myself and finish this book. I’ve been afraid of it for so long because some of the tribulations the character goes through are what I have with MS. She’s me, but not me. There are parts of the book and characters that now looking upon them after all this time I think needs tweaking but for the most part, I like the direction the book has been going. I just need to get back to it.

I need to forget everyone who seems to have forgotten about me. That includes friends AND family.

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Easily Undone



This week has been a strange blur.

First, I’m dealing with the fact that I’m back here. Here. Writing. Trying to put myself out there. Even if it is just for me, or for the few who actually bother to read what I have to say. Still, I’m doing what I need to do.

This week has been strange. Emotional. Physical.

The holiday being in the middle of the week threw me, and my family, off. Nothing has been normal. Add the full moon tonight, a power which I strongly believe in, and my energy and my output and emotions have been thrown all over the place.

Let me start with this: With the longtime MS I’ve had physical limitations. And over the last two years they’ve been more intense than usual, partially due to my mental/emotional issues/responses to the MS. My anxiety and depression being so deadening I found myself spending a good part of the year curled into a ball in bed or on the couch when the youngest was at school. I lost a good portion of who I was. This year was my worst. It was late spring when I slowly, but surely started to climb out of this. I’m still climbing. And this summer, knowing that summer is usually my roughest time of year, I’m actually doing fairly well, considering.

Anyways, with these issues, I gained weight. My legs became weaker. My legs have always been a huge issue with my MS. They were one of the first indications I had MS. Years before I was officially diagnosed. Sometimes they feel like dead weights. But late spring I forced myself to get up and start walking. I would push myself till I could start walking to meet the kid at school a few blocks away. While to most of you out there, you’re thinking “I can do this any day”. For those of us with decades of a neurological illness that affects every aspect of your daily being, your daily movement, to fall into this type of trap and eventual ability to crawl out of it, is monumental.

As I said in my initial “I’m Back”, there is a lot I could go into regarding the hell I’ve been through with the MS the last couple of years, but I’m not going to drop it all here and now.

The weight gain isn’t huge, but for me it is. I’m not who I remember, yet at the same time I’ve come to love myself a lot more now, in my nearly late 40’s, than I ever did in my 20’s or 30’s. I’ve come to understand that my body has its moments, its limitations, and it’s still worth being here. I have a spouse who loves me. Who doesn’t mind that I’m not perfect. I’m not a waif. I was, back in my 20’s and early 30’s when I was post divorce and smoked my brains out.

When I was a size 2/4/6 I pushed myself hard. I was a smoker. I smoked because it was for the most part, what I was taught was the way to keep my weight down. It’s been 12 years now. Since I quit. I don’t talk about this often. I’ve had my few moments where I’ve had one in serious times of stress. Every couple of years. There was the time 11 got her head stuck in the railing(age 4) and the fire department had to pry her out. The time my AC died and we were fairly broke at the time and it cost and arm and a leg. And I had to take the kids to my mother’s. My brother was there and he handed me one on the porch and I didn’t blink. I knew better and felt worse the next day.

May I add that I took myself to the immediate care this week to rule out a blood clot in my leg due to serious pain? I knew I was being dramatic. That the pain was me and the new workout routine aggravating a former muscle tear. After two hours and an ultrasound, I was right. But it was worth the peace of mind. Also, never Google leg pain. Ever.

Also, late night fights with glasses are rough. The winner is usually undetermined. Especially when the amount of wine drunk is a catalyst.


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What I meant to Say

(This is what I tried to post last night but unbeknownst to me I accidentally created another version of this blog and posted it there. The moonlight does some strange things to my brain)

When I was younger, when I was just past 12. My parents had just officially, truly separated.

My father had taken us on this yearly trip to Elkhart lake in Wisconsin. Just a couple hours or so north of where we lived in these suburbs of Chicago.

This was before he met my stepmother, whom he’s been married to for about oh maybe 3o some years.

It was me, my sister, often our younger brother and mostly my sister’s and my best friends.

I lost T’s earrings at this resort one year. T was my longtime best friend through childhood. Most of it. She went everywhere with my family post this time. . This resort was something I loved and lived for every summer. It was my nearly 12th year when I was introduced to Rickie Lee Jones via my dad’s cassette tapes. I was too young to supposedly understand but yet, no, no I wasn’t. Subtlety wasn’t a strong suit for me.

I understood so much due to what I had read. I read books and subjects that would curl the toes of most parents nowadays. Which often makes me laugh considering that we’re parenting the same age group, and that we’re restricting our children from knowing about things that we know even before they did. Why are we so scared? There’s no good reason. Just fear.

Back to Rickie. She became my everything that summer. And for years beyond. There were times when I would find myself upon a stool inside my dad’s house, with rum & coke in one hand and cigarette in the other, alone I’d sing along to her songs trying to rectify the pain I’d dealt with the last several years. This was my coping mechanism.

Years later, especially realizing the pain that Rickie had dealt with in regard to her own issues, I had to try not to idealize her pain and romanticize it.

She was my biggest influence growing up, I didn’t want to use her music as an excuse to hurt myself. I don’t think that’s something she would want. Instead as I grew up I found the ways to listen to it as I should have all along, as an admirer of the craft. The creation itself, not the artist’s own pain behind the scenes.

She was the first of a small handful of artists that over the years would come to mean the world to me. Whose music I could put on and find myself climbing out of the depths of pain surrounding me, or who could bring to me a sense of solace that everything in this great big world finally makes sense.

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Where Is my Mind

I’m here, I’m there. I’m everywhere.

Influences far and abroad have brought me to who I am. I try to come to some sort of rectification as to who and what I am.

There are artists who have brought me to these points there are also situations that I have tried to explain away and though that in this world I grew up within there is no out. There is no explanation. You just exist as they taught you to.

Only, I refused to do such that.

I found my solace in artists like Rickie Lee Jones. Whom my father inadvertently introduced me to when I was 12. I was TWELVE. However between Rickie and Todd Rundgren , and the artist such as Queen and so many others I grew up within the 70’s/ 80’s  I found a way to survive.

There’s so much I could elaborate on, but I’m tired. I’m angry. I was asked tonight why I don’t talk to a certain sibling and I couldn’t explain this without shrugging. Shrugging with little conviction.

I want to love them. I of course do, but they’ve hurt me, they’ve hurt themselves. And here, I quit.

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The Simple Story

I’m back. For now.

The last three years has been eventful and at times, not so much.

It’s been equal parts exploration and misery.

The MS hit a point that it’s never hit before and it caused me to stop driving. Period. Nothing. Nada. Nope. 18 months ago.

I’m still on the precipice of starting over. Only in the last two months have I tried. It’s been…ok.

Much of this was caused by a severe uptick in anxiety. Most of it due to my MS. My vision issues bite.  Primarily social anxiety.

I’ve always dealt with not always fitting in with others, though usually I would find those who stood on the outside, just on the very outside, just like me, that I could be friends with. This town however, it broke me. It broke someone like me. It’s good at breaking people because of who you have to be on a regular basis, but I could never and will nor want to, fit in. Therefore, I’ve been a prime target by other parents.

There it is. Parenting is a bitch when you aren’t custom made, custom ordered. When you don’t try to be everything for everyone else. And you god forbid, have tattoos and fight against the normal. Listen to music that can’t be found in the top 50, and understand the ways of others that think outside the box, who might deal with feelings in ways unorthodox to you.  In a town so dead set on being normal that if your daughter doesn’t wear the right brand of underwear she’s an outcast.

I won’t abide by this. I never thought I would. I grew up in a town similar to this. It’s where I lost myself. Where I realized I would never be what my family wanted me to be. Despite the traumas I experienced that I never asked for. Not that anyone ever asks for any traumas.  This I’ll go into as time goes on.

I’ve chosen to keep this off social media this time around. I’m not looking for the hits. I just need the output, the ability to write my feelings out. I had to start seeing a therapist on a regular basis this past year and she’s finally sussed out that my problems with feeling dead inside sometimes has to do with my family and especially what I dealt with growing up in the town I did. The abuse I experienced emotionally and mentally from family and friends. From expectations. Why the past year I’ve kept a serious distance from most of my family.

I know this is the most depressing “Hello” you might read, however this is what it is. I promise, it won’t always be this dark, but for me, some days it will be.



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