Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: cancer

Mar 24 2013

Grief

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As I write this my beloved Auntie Paula is dying of lung cancer. Stupid, freaking, destructive cancer. I hate it. I hate that I’m not with her more. It’s not my place to be with her. My uncle is there. My cousins, her daughters, are there. And her grand-daughters are there. My Grammy Lou Who (I only call her that here on the blog, I don‘t know why.) is there with my partner in crime, my Auntie Sharon. My Auntie Paula doesn‘t need me there. Yet, I feel as if I should be there.

I feel like I’m moving through molasses. Every breath is too thick and it hurts. My brain feels fuzzy and hazy, like I’m drunk and stoned. Only I’m stone cold sober. Moving just feels… awkward. I can’t really explain it but my body doesn‘t feel like it’s entirely mine. Everything hurts – every joint, every muscle, every everything – which isn‘t new or unusual yet it is. This isn‘t my usual pain. This isn‘t my usual achy don‘t touch me, my skin feels like it’s on fire pain. Although my skin does feel like it’s on fire. It just doesn‘t feel…right.

I’m hungry one minute. I feel like I’m starving and I haven’t eaten in days (I have I assure you). Then 10 minutes later the mere idea of food turns my stomach and I can’t stand to look at it.

What the hell is happening to me?

Does any of this make sense?

If you have any thoughts or ideas or well wishes or whatever please leave them as a comment on my post on my blog so that I can enjoy them.

Thank you for your love and support!

Permanent link to this article: http://lostandtired.com/2013/03/24/grief/

Jul 02 2012

#Autism and Insurance: Screw the bottom line

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It was the beginning of May when I won the appeal and insurance agreed to cover speech,  OT and PT for Emmett once again. However,  here we are in July and he still hasn’t been able to return.

I spoke with the therapists office again this morning and they are still waiting for paperwork from the insurance company.

I also spoke with the insurance company and they didn’t seem to have a clue what was going on. I was told that the therapist has to call medical management,  which I’m sure has been done already as they want Emmett back as much as we do.

They are still refusing to cover Elliott’s OT and PT.  That just baffles me because Elliott’s muscle tone is worse than both Emmett and Gavin.

I hate insurance companies.  It’s nothing but a business and they decide people lives.  The reason for them dropping Emmett was because they said that he hasn’t progressed enough in 180 and they don’t believe he ever will.

We need more oversight and more people to speak up.  I realize that they can’t help every person every time. Having said that,  when it comes to a child,  whether it be cancer,  autism or something else,  they should receive the help and care they need.  Screw the bottom line,  on of the kids they refuse to help may have grown up to cure cancer,  AIDS or even revolutionized Autism research.

Screw the bottom line.  It should be about the people and not the stockholders.

 

Permanent link to this article: http://lostandtired.com/2012/07/02/autism-and-insurance-screw-the-bottom-line/

Oct 14 2011

Heartbreaking

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Tonight has been very sobering thus far.  I was contacted today by a fellow special needs father and good friend of mine Josh.  I haven’t known him very long but I have grown to respect him tremendously.  He lost his beautiful little boy last night.  Kade was 3 years old and passed away in his sleep from what they believe was a seizure.  I don’t even know what to say.  This is absolutely heartbreaking for me as a father.  To lose a child is the worst thing imaginable.  My heart just breaks for them right now.

About 20 minutes ago I got a message from an old friend from my fire fighting days.  He informed me that a fellow firefighter friend of ours passed away today after battle with cancer. I didn’t even know he was sick.  I have lost touch with so many people over the years.  I don’t know how many people are alive today because of him. I know that he changed mine. 

Please hug your children tonight.  Never take them for granted.  Call an old friend you haven’t spoken to in awhile and say hello.

Emmett and Kade were the same age.  I found out about Kade after Emmett had left for Lizze’s parents to spend the night. Every single part of me wants to go pick him up and bring him home.  I just want him close.

Everyone is sleeping and I’m alone with my thoughts…  To much time to think….

Say a prayer tonight for the lives that were lost tonight.  Keep these families in your thoughts as they go through this very difficult time….

– Lost and Tired

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Permanent link to this article: http://lostandtired.com/2011/10/14/heartbreaking/

Jul 06 2011

Explaining Cancer to my Autistic sons

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My wife wrote this today and I think the title sums it up. This is something VERY personal to her and it’s something that unfortunately touches even the special needs families. How do you explain something like cancer to any child let alone an Autistic one?

Explaining Cancer to my Autistic Sons.

By Elizabeth Gorski

Permanent link to this article: http://lostandtired.com/2011/07/06/explaining-cancer-to-my-autistic-sons/

May 27 2011

Progress and tragedy

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Yesterday was a day of mixed blessings. There were some positives and also great tragedy.

I’ll start with the good news. Lizze left here final treatment MIGRAINE FREE. After almost a 2 month long migraine she finally has met with relief. Thank you everyone for your support, thoughts and prayers during this process.
Emmett is really taken to using the phone to learn. He is learning new words and building self confidence at the same time. It does at least, appear to be helping him settle down a little bit. He actively seeks these learning apps out and has learned to navigate the device himself. So that’s also good news.

We also received some really bad news as well. A friend of my family, someone I grew up with lost their 8 month old daughter last week to a yet unknown illness.. We don’t have all the details but PLEASE say a prayer for them. This is an is an unimaginable time of grief.

Lizze found out yesterday that a member of her family (someone very special to her) had a resurgance of cancer and is in the hospital. PLEASE pray for them. I’ll post more when I get permission. For now we just need your prayers.

On a much less tragic note the van broke down again yesterday afternoon. We were stuck in traffic and on the way home from picking Lizze up from her last treatment and Emmett and Gavin up from school when the van died again. We were passed by one car before an old beat up pick up truck stopped and offered to push us out of the busy intersection. We ended up walking home but it was only a few blocks.
So thank you, whoever you were. I appreciate your kindness. My family appreciates your kindness. The van is once again in the shop after once again being towed there.

Please keep these people in your prayers.

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Permanent link to this article: http://lostandtired.com/2011/05/27/progress-and-tragedy/

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