May 24, 2013 · 11:32 pm

The Head & the Heart

I laid in bed with his arm across me. The room was dark and the house was still.

I sobbed as silently as possible. At first it was just small tears. A thought crossed my mind and it disturbed me. But the more that I thought about it the harder I felt them come. A tear rolled down my cheek and hit my shoulder. And noticing this I started to cry even harder. As quietly as possible so not to wake him. My mind raced and all these words came flooding to my mind of what I wanted to say, and then…just as quickly they disappeared.

I tried to get up without waking him, I grabbed my glasses from the nightstand and made my way downstairs.

Here I sat.

Something had been bothering me for a while. And for some reason tonight it was making me feel worse than I had felt in years.
This sense of not accomplishing what I was here for. What I needed to do. What I always wanted to do.

Since I was a kid I wanted to be a writer. Always. And throughout the years after there were several other professions that I thought I might be good at: psychologist, dancer, actor(I haven’t been onstage since the early 90′s, I miss it so), and singer. Writing however had always been my main goal. My first love.

I never went to college. Well, I made it to Community College. I barely made it through high school. Not due to lack of intelligence. No. My emotions have always been my downfall. I’ve always felt more then and seen more than the average person. Senior year I had one teacher say that I was probably one of the most hypersensitive people she had ever met in her life. And it was meant as a compliment. She later explained that she noticed I had a strong but not developed properly sense of intuition. She was right. I can still walk into a room and pick up on the energy around me. I can figure out whether or not someone likes me, who is nervous, or who is hiding something. When you’ve been this way for most of your life it can make you feel uncomfortable in most every situation. There are few people I’m truly comfortable with, people I feel aren’t judging me in some way.

This “gift” unfortunately stagnated me over the years. I led with my heart rather than my head. I found myself in situations that weren’t ideal, and I often made choices that probably weren’t for the best. Thankfully I learned lessons from each one.

I never had the chance to become a psychologist or an actor. And only now am I trying to be a writer. Through here at least. Which I’m thankful for this opportunity. My words perhaps will be seen by some and hopefully understood.

Back to earlier. Back to the tears.

Lately the jealousy I feel for others who can accomplish and be who they are, get out in the world and make a difference has been overwhelming. The things they can do that I cannot: travel, live, create. This jealousy has been eating me up inside. I get angry that I didn’t use my youth when I had it to go out there and try to be something. Someone/something that I always planned on. Oh the dreams I did have when I was younger. I used to write them down in notebooks. Plan them out .

Yet those damn emotions and bad choices always stopped me from proceeding.

Now I feel more stuck than ever. It’s this illness. My brain for the most part works fine. Unless you count the fact that there are times I forget the meaning of words, how to spell them, and sometimes when I write I later realize I left out words in sentences. My eyes however are a different story. I no longer trust them to drive from any close distance. I can travel fine around my town and just a bit beyond but any further, especially into the city is terrifying. This limits pretty much every possibility that is set in front of me.
I can’t see friends. I can’t go to shows.

It’s breaking me down.

Listen, I’m strong. I really am. For someone who for some god unknown reason was dealt a rather unfortunate deck from birth on, I’ve survived. And for years anything that came my way I strengthened.
Yet there are nights like tonight where I cry myself to sleep.

Where I wonder when I’m going to get my chance.

It has to be my turn sometime, right?

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May 11, 2013 · 4:46 am

The Tide Turns

I need to step away.

Perhaps get off of my soapbox. But that would be absolutely, positively no fun.

Growing up I was the one who kept their opinions to their self. I had many, trust me I had many. However I just didn’t like to rock the boat. I reserved that for my siblings who had zero issue with rocking the proverbial boat at home. So I stayed quiet and out of their way.

Years later of course I found my voice, this coincided with becoming a parent, going through a divorce, dating again(not recommended) then remarrying(though I guess you have to date to do this part) and having a later in life kid. During this time I realized that I could not keep quiet about what I believed or thought(nor should I have). This of course resulted in me being labeled “nice with a side of bitchy”. Hmmm. I prefer to think of it as “no longer your flipping doormat”.

I’m applying the latter to most everything in my life. The down side is that maybe at times I’ve become a bit too self-righteous for my own good. I often don’t like to back away from certain subjects when I know that my point needs to be taken more serious. Or when I think people aren’t being objective about something and are looking at it from a hard angle rather then from all angles.

The one subject that really has me worked up more and more over the last few years, and increasingly so the last few months is the MS meds life vs the No MS meds life.

There are so many patients out there who like to scare the hell out of other patients by stating that MS is a death sentence and if you don’t take the meds you’re killing yourself even more. Listening to this(or reading this) really can be frustrating. Not all people with MS are alike. Not all cases of MS are alike, and the reactions to meds are not alike.

Sure there are some medications that are nearly guaranteed to provide certain side effects. With Avonex there’s the flu-like feeling that hits the first 24 hours. For some it’s hardcore, with others it’s as if you have a really bad headache & mild body aches. It’s there, just not as bad as it is for other patients.

I won’t even pretend to know what the side effects are with the other medications. They run the gamut. I know that with Tysabri(the once a month IV infusion) you have to be tested for the JVC virus before you can start it due to the early cases of PML that people developed after taking it. Which is an often(not always) fatal brain disease. If you’re positive for it you won’t qualify for the medication.

I’ve always been a bit negative when it came to the medications. For years I would warn people away from them. Well not warn, just let them know that if this isn’t what they really wanted to do and if they were on the fence then they shouldn’t go on them. This has been an unpopular opinion.

However as the years have gone on and my years have gone on in participating with many MS groups and boards I’ve seen a growing contingent of patients who refuse to take the medications, and people like myself who have seen an odd connection with a deterioration that is faster on the meds then not being on them. One of which is that each medication causes side effects. And often those side effects cause another drug to be prescribed. This goes on and on until people wonder why they feel worse on these medications instead of better.

Before anyone jumps down my throat that I don’t know what I’m talking about, I do. It’s been 19 years officially diagnosed, but I had symptoms for several years. As early as my late teens, before the diagnosis. I even had doctors wonder and suspect the MS despite how mild it was. Until the official diagnosis when the lesions were seen was it made clear. So I’m going on 24 maybe 25 years now. Which to many seems illogical that I’ve made it this far without being on meds.

But I have.

I tried Avonex twice. Within a year. I lasted a couple of months each time before the horrible side effects frightened me off for good, nearly ten years ago. My only other experience with any medications has been with prednisone, which is a steroid. I’ve had to go on that at least three times, the last about three years ago. The first time I was put on it was shortly after thanksgiving of 2004. I was married just weeks prior. I had a really bad flare and saw my dr’s partner in his office thanksgiving weekend. He put me on a dosage I would later discover was twice the amount that would have normally been prescribed. Not only did I blow up like a giant moon within two days but I picked fights with everyone around me, in that process I also severed a friendship for several months because of my sharp words and judgement. The steroid is infamous for making people’s emotions escalate, and with my being on a much higher dose then normal, the damage it did to me mentally was off the charts.

From these experiences I decided that the drugs were not the best for me. So I went on without them. Now my MS was always fairly mild the first ten years of official diagnosis. But by the early 2000′s they took a sharp then even sharper nosedive. This is how I ended up on the Avonex. And off of it.

Over the following years I realized I did quite well off of the medications. Though I had flares even my then Doctor told me that I was doing remarkably well considering what my tests showed. And yes, here’s the odd part. Take a look at my MRI’s and I have all these lesions. But when he would have me in an exam room, despite my reporting that I had problems, he would tell me that I would pass the physicals. This often left me upset and angry. I knew what I was feeling but why was I passing these exams? The Doctor always found my case to be an enigma, and he was fascinated with my strange, conflicting exams.

It was then one day when he told me that it scared him. I had officially failed a physical exam. This was a year after my daughter was born in the late 200′s. He brought up the medications once more to me in a manner that conveyed “I’m not going to push you, but you’re not getting any younger or healthier”. I refused once more.

Now we come to several years passed, and why I’m writing this:

My condition has deteriorated to a point that I finally have agreed to go on the medications. Keep in mind this is way past the years of when most people are on meds. Nowadays they have patients on medications within weeks. I’ve lasted almost two decades.

Since I started writing this a few days ago some things have drastically changed.

Next week I was supposed to start the injectable Copaxone. It’s the one inejectable medication for MS that doesn’t have such horrific side effects. Though from what I’ve read online on my groups, this opinion varies. Some have said that while it doesn’t give you the flu-like symptoms that the interferons give, there are some side effects such as hair thinning/loss and weight gain associated with it.

I admit this was somewhat frightening and off-putting to me. I’m in my early 40′s and I still have a very vain side that has no desire to deal with the above. I would like to keep my hair, thank you.

I called my Neurologist two days ago to talk to her about an issue/question regarding a drug my dentist wanted to use for a procedure. Something I have an extreme reaction to.

While talking she asked me about the Copaxone and noticed I hadn’t started it. I informed her it was in my fridge and the nurse was set up to come out next week to start the dosage. She said to hold it. The new drug BG 12( Tecifedra) that had been out in Europe for several months, and approved in March here in the US, was available and she thought it would be the right time. When we initially discussed it over two months ago, it was yet to be approved by the FDA. She said at the time that she would hold off several months until it was on the market for a while.

Something happened though that made her feel it was the right choice and the right time. She told me she was pushing it through to insurance NOW. It’s an oral drug that’s taken twice a day vs the once a day shot via Copaxone. The side effects are reported to be minimal compared to most every other MS drug on the market. Plus reading some of the daily reports on the message boards I’m hearing some amazing progress. People are saying they have more energy, less spasms, vision problems practically repairing themselves.

This really has been heralded as this miracle drug for people like myself. Patients close to that edge or just going over that edge. My doctors never thought I’d get this close.

I never thought I’d get this close to really question my own mortality. The last few weeks have been frightening and have pushed me to a point I never hope to go to ever again. I’ve honestly looked at the fact that with my sight problems and cognitive issues, there just may be a time I may never see my kids. Or just not be able to drive them to activities and appointments. The little things that sometimes we all take for granted. I realized that I don’t know how much time I had left. I just watched two women(Annette Funicello & Chrissy Amphlett) I grew up admiring from afar die within weeks of each other due to complications of MS. This impacted me far more more then you could ever imagine.

I became depressed. I lashed out today and said enough is enough.

I jumped off that box I stood upon so proudly all these years. I decided that now is the time I try something new. So as soon as it’s approved by insurance I’m going to try this new miracle medication and hope it helps.

I’m still going to deal with the depression problems. Today was an eye opener for everyone in our family. I may go on meds for the first time ever. We’ll see. I do know it’s nothing to be ashamed of. It’s something I need to take my time on.

I just want to keep living. I don’t want to give up who I am and what I believe in. Yet, I don’t want to let this take me over for good.

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May 8, 2013 · 2:40 am

Come what May

April was a positively horrendous month, I think we can all agree on that one. It seemed as if the universe had been in crisis mode from beginning to end. Disasters, traumas, and a lot of wonderful people passed away. I don’t know about you but I’m glad it’s over and I was hoping May would be better.

So far it’s not bad. The weather has at least improved. We’re now seeing more sun and it’s in the 70′s. However the rain and snow of March & April destroyed the soffit on my house. Or rather a costly mistake made by the installers of our new gutters a year and a half ago destroyed them. The front of our house is falling apart & off. I’m not kidding. It’s an eyesore, and birds are building a nest in the hole. Why yes, we are working with someone to fix it. It’s been a whirlwind of construction suggestions( a new roof, when really the roof isn’t that big of a problem right now) and insurance investigating twice saying there was nothing they would do. So that was what I did most of April. And to say it exhausted me is putting it mildly.

Each morning after heavy rains I would go outside to find even more of our soffit ripped apart and sitting on our driveway or in our yard. The nights we would have these rains I would barely sleep because as it thundered hard enough to shake our house all I could imagine was that the whole thing would be on top of my husband’s car in the driveway the next day. Thankfully that never happened. However, it left me sleepless one too many nights.

We’re still waiting to get this fixed, the construction gentleman did our siding over a year ago and he’s promised us the gutter people will be paying to have all the repairs done to the soffit. I’m holding him to this. I just want this fixed before the rotting worsens and the whole front truly DOES fall down.

Now on top of all this, that pesky little MS problem is still here. I keep trying to will it away and I was doing alright for a while. The only problem is that the flare is still going. It’s the longest flare I’ve ever experienced. Whenever I get remotely worked up or stressed out two things occur: 1) my hand and arm tremors something fierce 2) One or both of my eye muscles pull down and I can’t see properly.

When #2 happens it sends my body into panic mode. Add to the fact that this has happened while driving exacerbates the whole situation. My brain goes into overload sending my body onto a crash course of “I don’t want to work anymore”. Sadly it’s happening at least once a week now. Which is why I’m hesitant to drive just about anywhere that isn’t within a few blocks of my house.

I was having a problem nailing down a day to start the Copaxone. It seemed as if every weekend had something going on not to mention school winding down for the kids with many different end of school activities. I’ve been conflicted. I don’t know what the side effects will hold as they vary from person to person. I just remember my horrible experience with Avonex.

Yet after it happened again this week, and the increasing exhaustion & depression-a depression unlike anything I’ve felt before, it’s more my anger at all of this and feeling limited- I decided that I need to start them. Also my mother more or less hounds me on a regular basis that I’m hurting myself by not starting them.

I’m starting them in a week. I don’t know what else to do anymore. I don’t know if they’ll help, if they’ll slow down this constant feeling of my body & life being out of whack. It’s worth a try.

So I’m canceling May. I’m not committing to anything and I need to take a break from decisions. In fact if I could get someone to clean my house & sort through the kid’s toys then my life would be peachy.

In lighter news: I’m a redhead again. And I could not be happier. Though I wouldn’t mind being even more red.

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April 23, 2013 · 6:21 am

The Good Die Young.

I’ve tried writing this several times tonight and the words keep failing me.

There is no good way to explain away how you feel when someone you’ve admired and damn near worshipped dies.

There have been people, people who happen to create, that I’ve really admired who have passed throughout the years. Not one I would say who really went deep inside my heart and soul in one way or another.

Until today.

This morning I found out that one of my longtime idols-someone who I think about often, whose music I’ve listened to regularly for nearly 30 years, who has influenced the way I think, the way I express myself, and even my style- passed away yesterday from a many year struggle with MS & Breast Cancer. She was only 53.

To say that I felt like the world underneath me fell out for a moment sounds a bit dramatic, but to be honest it’s what it felt like this morning when I was informed by my husband who had read about it before me.

The woman who had mystified me and drew me in to her larger than life persona, glorified through her music & her videos in the early-mid 80′s, had just left this world.

I want to make this more of a tribute, I just don’t know how.

I’ve consumed enough wine tonight to dilute the tears that have been falling since this morning.

There is so much I could say, but so much that might not make sense. Sometimes loving one of your idols means that you cannot construct a proper goodbye. Or at least an understandable one.

Over the weekend I embarked on a project that was initially a blog post that I soon realized would end up being a 3-4 part post. This wonderful and astounding woman was to play a huge part of it.

In fact I was up until 2 am part writing, part drinking, part researching some facts. I found myself up late looking at some of her videos, and reading bits of what her life had been like the past few years. You hear so little since she had been ill. Which is understandable. When you have an illness(s) like she had you tend to either be a bit vocal about the brutality of it or you keep it to yourself.

For the most part it seemed she had done the latter.

From reports it appears she died that next day. Hours later. This devastates me in a way I can’t explain. She was in my head before I went to sleep. And many hours later she fell asleep for good.

I tried writing this earlier tonight with descriptions of everything she had done, giving you a play by play account of her career and some of what she opened up for me as a wide eyed 12 year old in the onset of the MTV years. This doesn’t seem right somehow. What I can do is give you why I loved her.

Christina(Chrissy) Amphlett of the Divinyls broke into our worlds, us children of those early 80′s, via our television sets with her (then) daring outfits and lyrics and attitude that showed how strong and tough a woman could be without losing her feminity. I was a wide eyed teen looking for someone to show me a different world, something that broke me out of the conformity of my middle-class suburb. Where I never quite felt like I belonged, where I knew there was more to believe in, more to get out of life. Her video persona I would learn years later was something so much different then who she really was. And a part of me was relieved. She had a shy side just like myself. But also a side that when needed knew to fight for what was believed in.

I admit it was her red hair and wide eyed pout that I imitated throughout the years. And even today, as recent as two weeks ago, when going back to red it was her picture I carried with me to my salon. 30 years later she’s still my icon of beauty and power that I look up to.

In the early 90′s the rest of the U.S. finally paid attention to what I had seen those years before. That’s when the band had their first breakout hit. Unfortunately the song wasn’t taken seriously and is considered to some to be a one hit wonder, which if you know the band well you know that isn’t the case. There is so much depth & strength to the songs they have written throughout the years.  I remember when the song came out(I Touch Myself, for those who don’t remember) I had the fortunate experience of friends pointing out I looked like Chrissy. I remember thinking that was the greatest compliment I could get.

Several years later the Divinyls disbanded. I was still a fan.

Then about ten years later I read that Chrissie was diagnosed with MS. Knowing someone who has MS, you feel as if you’re part of a special club. MS is an illness so mysterious in symptoms and progression that only those of us who have it understand it fully, coming across another person who has it immediately leaves you with the feeling that you know that person.

For me to find out that Chrissy had MS, something I had been diagnosed with since the early 90′s & probably had for years prior, felt somewhat terrifying and calming. Here was someone that I grew up loving and admiring. Who to me was the epitome of strength, who helped me during the early years of trying to figure out who I was, and trying to figure out how to be a young woman, she had this bitch of a disease that I had been dealing with for decades. We were alike. And if I had my way I would have reached out to her to help HER, because I knew what it was to deal with this damn thing for so long I no longer felt like a stranger to it.

But she was untouchable. Then I read she was diagnosed with breast cancer. Then 2 yrs ago I sat in my Neuro’s office and came across a copy of Neurology magazine and she was on the cover. I sat reading the article, contemplating stealing the issue to take home. My good side won out and I couldn’t do it. Right now? I’m wishing I had it on me. Because that day reading it I felt a bit more empowered to soldier on. I was feeling down on myself for having a setback, a flare. She gave me some hope.

———

So this morning my husband told me the news and I dropped what I was holding and could barely speak, I walked to the computer to look and saw the news.

All day I constructed sentences in my head of what I wanted to write. I knew I had to write something. But by the time I sat down here it all washed away.

All I know is that my heart hurts tonight because someone who had done so much, been through so much, and touched so many people is gone. Way too soon.

I’ve sat here tonight listening to her songs on repeat. There are too many songs of hers I could list as being my favorite, however the one that really cuts through my heart is the song “Human on The Inside”. To this day I have a dream of performing this song live. However no one will ever compare to Chrissy.

Goodnight Chrissy Amphlett. I’m glad you were in my life all these years. And even though you’ve left the earth, you’ve still managed to touch so many people, and through your words and your beautiful voice you’ll continue to do so.

Thank you.

Chrissie Amphlett

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April 13, 2013 · 6:30 am

It’s been a while.

It’s been a while.

I don’t think I’ve written in a few months. And for that I’m sorry.

Yet I’m not.

The last three or four months have just been impossible to explain.

There really is no good reason. Sure I had the stress of dealing with the cookie sales for Daisy’s/Girl Scouts( I know it seems silly, but honestly it’s a pain in the ass and took up way too much of my time) yet the stress of some of it seemed to combine with some other small things going on to create a perfect storm with my health.

Last I wrote was not long after Christmas. I’m not even sure now what was said or written.

I just know I lost my passion for writing. For feeling.

Around that time I seemed to be dealing with more and more symptoms relating to my MS. Symptoms that made me feel like I was aging quicker then I should be. Many of them took the form of emotional  which then transferred to physical, causing my body to want to shut down. I found myself wanting to do nothing but burrow under the covers and watch TV series on Netflix or On Demand while the kids were at school.

The effects of this were that I was continually fatigued and weak. I felt more ADD then I ever had before. I know I’ve always dealt with it since I was a kid, I was just never diagnosed. My mind goes from one thing to another in rapid speed. Sometimes I’m convinced it’s why I have such a curiosity about everything under the sun. And why I know a bit about everything but never more than that “bit”.

It was the beginning of March when I finally forced myself to the Neurologist’s office for the first time in two years. Even throughout all of my flares I never went in. If it were one thing I learned over the 20 something years I’ve had this illness it’s that going into the Dr’s office for every odd feeling meant a 50 dollar payment and the possibility of being put on a medication. So for those reasons I chose to deal with the symptoms & issues as they came along. Despite the worsening of the flares, and their frequency.

However the reason I went into the Neuro’s office was due to the fact that for weeks I had this continuing issue with my eyes. It kept feeling like the muscles were pulling down my eyelids. This could occur at most any time of the day no matter where I was. Most often it was when I was in the car. So many times within a couple of weeks I came close to getting hit when I couldn’t see the car coming from the right or left because of the direction my eye was pulling down. It was my wake up call, I couldn’t put these issues off any longer.

My mother took me & my youngest that day and she had yet to see the full scope of what was bothering me.

Then when we were sitting in the Doctor’s office I could feel the change in my eyes and told her to look, it was then she exclaimed with her hands flying to her mouth ” Oh my god, one eye is pulling down and the other is looking the other direction”. Yes. This was unusual and frightening.

I went in and talked to the Dr and she admitted that my attempt at the MRI months prior at least showed that my lesions had increased. She said that there wasn’t more to say then well yes, your MS is probably getting worse.

Now let me back up here.  See, for years my symptoms and tests showed that it was there and it was perhaps progressing at a normal speed & perhaps I would never go much farther than it.  In fact 2 years ago I sat in my doctor’s office and she tried to sell me on the medications once more only to tell me that really it’s been nearly 20 years so at the rate I’m going she didn’t think I would get much worse.

So imagine me sitting here laughing at this right now.  This visit, this one I had March 1st, she sat there gravely after examining me, telling me that my physical state has shown a change(despite my flares & MRI’s my exams in the office were always shining). There was the distinct tremor in my left hand(it’s been there for a long time). My eyes weren’t focusing and following properly. My reflexes were “ok”. My walk was off. Ok. Words often escaped me. As a writer this a waking nightmare, but I’ve discovered that speaking is harder for me then actually writing. Though my ability to type has slowed down.

The words she spoke next were not surprising, and this time after all these years I knew she was right. I have to, no she said “you don’t understand, you HAVE to” go on the medications.  I didn’t even blink. I agreed to it. We talked about a couple of the different drugs that are offered to those of us with MS. For so many years there were only three, the ” ABC” drugs. Now there are several more including one that was just approved nearly two weeks ago that is being called the “wonder drug”.

I left the doctor’s office not sure what to think. I relayed as much as possible in the car to my mother, even though my 6 yr old was sitting in the back seat. I went home and told my husband . I made a few phone calls not sure if I could accept what was being laid down in front of me.

It’s funny but I followed my general protocol which is to ignore anything even remotely disturbing regarding my health and continue on as if nothing was wrong. However I also sat on my computer for a few hours and researched some of the medications that she had brought up to me trying to decipher if any of them would be right for me. Later that night I broke down crying on the phone to my mother. She told me she was waiting for this call, she said that earlier I was taking it all too well.

I was hesitant with the Copaxone at first due to the fact that it was a daily shot, however the more I did the research on the oral drug Aubagio some of the side effects weren’t things that I wanted to ever encounter. One of them being hair thinning and loss. While yes that is the most shallow of reasons not to take a drug, if I’m to be left with any dignity whatsoever in my remaining years I would like to retain my hair for as long as possible. I’m sorry for that vain moment, but it’s mine.

The more I did the research the more I learned that out of the injectables the Copaxone had the least amount of side effects. And that eventually in my quizzing of other members of the MS groups online that I belonged to there seemed to be an agreement in this area.  I called my doctor the following week and made a decision.

The copaxone is currently sitting in my refrigerator. I’m currently unable to schedule an appointment with the medical company to get them to send a nurse to come show me how to inject the medication and get this started.  I know this sounds misguided and wrong but what it is is that it is the end of the year for my kids and there are many events coming up that would interrupt any time I would need to take off.

I don’t know how the side effects are going to hit me. I remember how they hit me when I was on the Avonex years ago, and that was enough to scare me off for years. In fact I swore that the medications did more harm than good. And to some regard I still stand by that, I think some cause side effects that end up being treated by other drugs which lead to complications.

I will start the medication probably the end of May. By that point my kids will be out of school and my mother has offered to help me out with them should there be an adjustment period.

So it comes down to this. Something I had hoped would never happen.

However I’m no longer scared. At least not like before. I’m no longer who I thought I was, I’m weakening. Something I prayed wouldn’t happen for years. But it’s happening now. There are days and weeks where getting up and functioning seem like something in the distant future.

Just this week the excessive rain brought me to a standstill. I went further into this depression I slip into when I don’ t feel myself. I’m angry and hurt. My life isn’t want I planned it to be. But I will tell everyone NOW, there is no internet link you can send me that will make me think that I can prevent this or heal myself. Thank you, but no your information is incorrect and unwanted.  I will get past this it just takes time.

I’m going to try to write again. I’m going to try and keep this place up to what it should be. Well I should, I just paid for it to be renewed for a year.

Music has always been my love but I neglected it. Right now it’s saving me. Going back to what has always made me sing and dance, made me laugh and cry is driving me to go forward.

So soon, I’ll see you again, or talk to you again.

 

 

 

 

 

 

 

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January 13, 2013 · 7:38 am

The Learning Curve

The holidays are over(thank god). The new year is upon us(may it be better for all of us). And the world is still spinning.

In the last few weeks I’ve stayed silent. And busy. I had Christmas to contend with, travel to my in-laws(where I probably had the chance to see the only snow I’ll see all winter-apparently snow does NOT like Chicago) and I’ve been in a very reflective and positive mood.

I’ve also had a big mouth. Apparently I’ve decided to be something of an expert at everything lately. And I think I’ve pissed a few people off that are close to me. Sorry. Just feeling a bit more annoying than normal.

Break is over and the kids are back in school. I’m furiously trying to avoid the plague that is roaming the country even if it means I avoid all people and things for the next two months.

I’ve also decided that this place needs to lighten the hell up. J keeps trying to convince me that I really need to write critiques on tv shows and movies. I’ve had many career interests over the many years I’ve been on this earth that include: forensic psychologist, dancer, actress, writer(duh), salon owner, entrepreneur, and also tv critic. Yeah, no joke to the last one. I think I’d be rather good at it. And now that television is no longer the wasteland it used to be, with amazing and intelligent shows being showcased I would love to have the chance to write about them.

Now, before you start reading this and thinking I’m a snob. I’m not. Oh hell no I’m not. I have very little snobbishness in my body. I’m open-minded to just about everything out there. I can love Buffy the Vampire Slayer and Doctor Who. Though about 12 years ago to say such a thing would be a travesty(at this point of course we’re citing the older Doctor Who’s in this). I can find the touching and hilarious in a How I met your Mother episode, yet call out a small part of my (favorite) show Sherlock for something I thought unrealistic.  Keep in mind, I’m in love with Sherlock(the show not the character, I’m a bit more in crush on John then Sherlock) and completely distressed that it won’t be back for another year. This is an absolute disgrace if you ask me. How could they do this to me? To umm.. us?

So along with the every once in a while really depressing and introspective pieces I think I’m going expound a bit more on what my interests really are. And I’m going to write some reviews on the shows I love.

 

 

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December 20, 2012 · 3:53 am

So many words, but also so few

The world has gone mad.

I’ve been in a funk and haven’t written a thing in a month. A THING. In a MONTH. Not here. Nowhere. I barely post to fb or twitter anymore, and tumblr just basically irritates the crap out of me sometimes. Especially lately.

I mean what can I say? I’ve been feeling numb inside. As if everything I could write about is verboten. Which honestly, much of it has been. Much of it has been painful situations loved ones have been going through. Not me. Them. And in some way yes what they’ve been going through affects me, mainly in the way that it hurts me to watch them go through hell, it’s not MY hell. But it’s left me helpless, and numb.

I keep feeling like I have all these words inside a balloon that’s growing bigger and bigger and the balloon is inside of me and it’s making me feel like I’m going to pop any day. Only I’ve been so afraid to put them down.

I’ve seen a family member go through illness and now thankfully recover. Again, not mine to go into detail about.

My son’s paternal grandfather is going through a heavy battle with cancer. One that right now is in a very bad place. I’m still friends with my ex, we chose to be for our son, and also because we never disliked each other in the first place. Just grew apart. I’ve always stayed friends with his parents. His father is one of those men that others would refer to as “the salt of the earth”. He’s a great guy. And he is insanely close with my son, his oldest grandchild. His oldest grandson. Who is named after his father.

When son’s dad told me the news that things were worsening I cried for a couple of hours. Terrified of what would happen if he never recovered. If this was his last Christmas. We’ve chosen not to tell our son most of this. We need to keep him anxiety free as much as possible for now. Son has had his own hard time lately and I can’t, we can’t, compound it.

Last week there was a school meeting that was determining where we would go for services and academics with son, it was an insightful meeting, and afterwards while standing outside ex spoke of his dad. He looked like he was going to crumble to the ground and I just reached out and hugged him. He let me, he thanked me. He needed that from everyone right now.

I left that day feeling happy. I ran my errands. The day was good for the most part.

It was 1pm by the time I arrived home and had a chance to go online for the day.

And then I saw what I had been unaware of for hours. 20 children. Six adults. Dead. Newtown.

I saw my facebook feed and then turned on the news. I sat down and cried. And cried and cried. I didn’t know them or anyone else there. But it tore me to pieces inside. Once I saw the ages it crushed even more. 6. 7. Kindergarten and first grade. That’s what they reported at first.

I have a child that age. I couldn’t, no, I can’t, imagine. I don’t want to.

My first instinct was that I wanted to be with my kids. The school was three blocks from us, I could go get her. But I looked at the clock and saw it was an hour until school was out. And I didn’t want to panic. It wasn’t her. I couldn’t, no shouldn’t, go. I stayed put.

I don’t want to keep going on here. This isn’t my story to tell. And in some ways maybe we all need to stop talking about it unless we experienced it. So many articles have been thrown around, so many posts from everyone offering their feelings and opinions. Which is ok to some extent but some are starting to be positively ridiculous.

I hurt for these babies, for these families and this community as much as everyone else. This reached deep into my core unlike anything else that’s happened in this country the last few years. I don’t think any parent especially will feel safe for a while. We’ll always be looking over our shoulders for something to happen. We’ll be on our toes, trying to keep our kids even closer and safer than they’ve ever been before.

Then one day we’ll loosen up and let our worlds get back to normal. But normal will never happen for those families. I wish I could go there and hug each and every one of them. I really do.

I have other words to write regarding the young man who committed this atrocity, but now is not the time or space.

The only words on that subject I have to write is regarding the earlier reports about him having Aspergers and being reported as “odd”. I felt it was unfair. For a person with Aspergers is not a violent person. I know this as truth. I can’t sit here and speculate what was wrong with that boy, there could have been many different things. Or he was just a cold-blooded killer.

However, when the media started rolling with this as a supposed reason why, my blood boiled. I even took ABC news to task via twitter. Others saw what I wrote and retweeted me a bit. It was simple: This could very well put those with Aspergers in a very bad light. They were doing a very big disservice to children and adults with Aspergers. I have a son who has it, and he’s not a violent person. Granted he has some anxiety/depression issues and there have been some extreme outbursts on an infrequent basis over the years. But they occurred only at times when he was feeling picked upon too much and he felt angry and hopeless. He was always remorseful and he never hurt us. My walls generally took the brunt of it.

I took him into my arms that day when he got home and hugged him so hard he yelped. He knew why. They had heard at school and he looked at me and said that he would/could never hurt anyone. I knew this, he has the biggest heart. He smiles and laughs a lot. While his peers sometimes don’t get him, adults positively love him. He’s a sweetheart who just wants to be loved.

This is what Aspergers is like. I’ve met other kids with Aspergers and most of them are just like my kid.

So it definitely is time that we stop putting a label on people and trying to use that label as a reason why people do things like this.

Instead maybe it’s better if we open our hearts and minds a bit more and maybe reach out to someone we misunderstand. I’m sure they’re just waiting for someone to be there for them.

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