Oh, Ass Burgers!!

Ok, Ok, I know Ive been away for quite a while but I needed time for my nervous breakdown so give a girl a break!

Wanted to let you all know that the diagnosis: "Asperger's" has been retired and will no longer be considered a separate diagnosis.  Instead it will be under the umbrella of autism.  More to come on this.

I havent decided whether this is a good thing or a bad thing.  More to come on that too!

My New Collection

Another good thing that has happened is that during the tragedy of hurricane Sandy, we did not lose power and sustained very little damage to our home.  Everyone is safe.

I didn't expect that because I have been expecting the worse for a while now.  Maybe because that's all I've been getting.  But I've been thinking about it and I've decided I need to start a new collection of things:

GOOD things.

So I'm starting my new collection now.  The first good thing was seeing my niece's photos on facebook and the second good thing is that we survived hurricane Sandy relatively unscathed.

My heart goes out to all of those who were not as fortunate.  Wishing you Godspeed.

One Good Thing

I haven't been on facebook in a while but today I logged on and somehow clicked on the beautiful face of my niece.  For some reason I felt like I wanted to see more of her.  I guess she just makes me happy.  She is infectious anyway and no one can be sad around her. . . I think I may ask her to move in soon!  Teach me a thing or two about life.  Anyway, I started clicking on one picture, two, seven, fiftyfive . . .

There she is with long hair, with braids, with a shaved head, pouty, dressy, tired, showing off her tats and that booty!  There was graduation, endless parties, fun at the beach, fun with friends.  Endless friends.

It's hard to explain the simple joy I felt at clicking back through the phases of her life (not to mention her hairstyles) to see that she had one.  HAS one.  My niece had and continues to have a richness to her life that reminds me of a painting I once knew how to make.  A balance.  A fullness.  Her photos are a testament to a woman with confidence because she knows she will be ok.  That her mom is fine.  And her Dad.  She is free from that responsibility.  Free.

My sister somehow flipped it out.  She did it.  She turned things around, she succeeded as a mother, as an adult, as a woman.  I am so proud of her.  I used to have a similar vision for myself and my children.  I didn't know what it would be: photos of Coleman playing hockey, Coleman and his friends playing chess, Coleman laughing as a girl puts ice down his back, Coleman at the beach as confident and free and happy and bursting with life.  Free.  

Maybe that's why I like movies and books so much.  You can dwell there for moments in time and your own life is suspended and you can feel hope spring eternal for all of the things that won't ever really be in your own life.  But while I clicked through those pictures I felt my life suspended.  I felt my niece's joy.  I felt her vibrant, beautiful, pulsating life in my chest and I felt so proud and grateful that she exists as proof of all of the things I've stopped believing in.

I don't know what I would do without that.

Who Am I Now?

I wrote my sisters a seething, negative, angry email last week.  Have you ever been filled with so much ugliness and anger inside that you feel like you have to squeeze a little bit out on everyone you see just to get some relief from the pressure of it?  The email I wrote wasn't to say that I was angry at THEM.  It was to say how angry I am period.

I wanted to wipe it on someone else.  I wanted to spray it out; pour it onto their heads.  Here is what I'm feeling and its not fair!  So I want to share some of it with you!  Take that--and that--and that!!!!

In a way I am horrified at myself but I can't deny that it did offer some slight release inside me.  Oh, how I loathe those people who seem to have a dark cloud over them.  Every time you talk to them its always something.  This one died, that one lost their job, this one was just diagnosed with cancer, that one tried to kill himself.

Whooooweeee, I tried to dodge those people like crazy when I was younger.  I was almost afraid that some of it would rub off on me, stain my clothes, get me dirty.  And somehow I have become one of those people.  I mean What the Fuck?  I'd call it poetic justice if there was any basis for my deserving it so I'll just have to name it IRONIC AS HELL!

There are people in my life who mean a great deal to me.  Certainly my sisters, my aunts, my mother and father. . . but I can't reach them because I am straight jacketed right now.  My wiring is off and sparking.  I'm pissed and sad and suffer the chronic pain all pathetic, overly depressed, overly anxious people suffer with and I'm empty for the ones I love.

I have always been a positive person, full of strength and optimism and resiliency.  But who am I now?

The One Year Plan

So I've been thinking.  The past 3 or 4 years have been a really shitty time for me and for my family.  Here are the areas that have made it so:

1. Issues with meds etc. for oldest son with Asperger's, ADD, Depression, Mood Disorder
2. Mother-in-Law with Dementia who lives in the basement 
3. Finances
4. Consistent weight gain with no end in sight for me
5. ITP, body aches from Isotetrinoin, Peri-menopause (also me)
6. Depression, Unemployment (husband)

We can't go this way.  As the saying goes, "Something has got to give!"  So I've decided we need a one year plan.  We can only tolerate one more year of this and it will take a year to truly be able to make significant changes in certain areas of our lives in order to make it more live able, doable, enjoyable.

1. Serenity prayer for our older son plus everything in the world we can do for him
2. Nursing home for Mother-in-Law. . .it is time
3. Apply for SSI for both children with disabilities to help with the mounting cost of meds, therapy, co-pays, life coaches etc.
4. Continued work on weight and introduce walking in hopes of some kind of improvement (plus Serenity prayer)
5. Deal with ITP, I will be off Isotetrin by December, try herbal remedies for night sweats etc.
6. Stick with plans for 1-5 to help alleviate pressure (depression) and keep looking for work--ANY work 

In a year's time I expect for some things to have improved for us.  Cole will be a year older and hopefully additional services for him will help with development (e.g.: online schooling, job, social skills training, new neurologist to replace current psychiatrist).  A nursing home will also take a great deal of pressure off of our family.  The kids will not feel as ill at ease with their grandmother roaming around looking confused and coming upstairs half dressed and my husband will no longer have the responsibilities of counting out meds, dealing with Access-A-Ride, driving his mom to dialysis whenever she gets the days mixed up, feeding her etc.

Hopefully with some of the pressure gone it will be easier for my husband to look for work full time and who knows, maybe the economy gets better?  Once I am off the Isotetrin, my body will feel better, my lips will stop peeling and I can feel like a human being again.  As always I will keep trying with my weight--its been a struggle my whole life and always will be.

And maybe this time next year I will be able to updated the blog from today with a list of things that have gotten better for us.  (INSERT another Serenity prayer here) :)

The Renassaince

Ever feel the need to start everything in your life all over again?  To just scrub it all away and make it clean and new?  Is it possible for a person to die of SAMENESS?

My life has been like that for a long time it seems.  I'm trying to remember back when it all began but it almost seems like forever.  Same struggles, same small victories, same fight in your heart, same depression filling in the blanks around it.  My life feels like stagnant sitting water with mosquitoes zipping across it and I want it to change.

I have no idea how I am going to do this.  Every plan is a version of the plan before it and every failure another version of itself.  But if I really look hard and think back I can remember a time when my life was like fresh running water.  Back then I didn't bleed for 2 hours if I stubbed my toe (no ITP).  I carried whatever weight I had alot more gracefully than I am able to now; no squeaks and pops and stiffness after sitting for too long; no huffing and puffing from the simplest physical tasks.

I had stamina.  I used to.  I was happier and had a positive attitude.  I wasn't hot and uncomfortable all the time.  My mind was razor sharp and something I could always count on.  I used to be proud of myself and there was an element of invincibility--THIS WILL LAST FOREVER!  But it hasn't lasted forever.  The only thing that feels like forever is this crazy loop I'm in where all things lead back to the beginning.

So here we are.  Right back to the brackish, stagnant, standing water swatting at mosquitoes. . . only now some of them carry West Nile virus.

Perfect.

WAIT! I Think She's Getting Up Folks. . .

How long have I been out?

I look around to see where I am.  I notice that I am fine.

I make two fists and press them into the ground to push myself up to a standing position.

My body feel stiff and a little sore.

I look at my butt and dust it off.

I breathe. . . .

Looks like I'm gonna make it after all.