Helen

 

 From wearing a dress , the same dress 100 days straight last summer I made a lot of online friends. This is Helen, she was a gift from one of those friends.

I named her Helen because I had a Aunt Helen that I never knew, she and my Mom were close. She had the dark hair like me that isn't common in my family, unless you are old......I mean the kids are blonde for the most part or a little red headed but not me....bald or brown but kinda red sometimes.

This has been a secret blog you know for the most part,

I mean if anyone tried very hard they could find it. I'm struggling with very serious and scary stuff but I don't think it's appropriate to tell my secret blog

I don't get many views however sometimes you can't talk about certain things....or your not supposed to.

I'm fighting really hard to hang in there.

But look, it's really nice I found friends when I didn't expect it.

I am a collector of dolls , and I don't plan on outgrowing it Either!

Hehehe...... even if it freaks out people. My dolls are simply dolls and I am very fond of them.

Yeah things are going to be okay, no matter what happens I know it's in God's hands.

I Feel Like I Am Stuck In Reverse....

 Welcome to the wild wicked world of seizures, you travel forwards but in a way it's reverse. Your friends grow up and move away, they have kids and husbands .......but you got stuck, all that traveling forward made you miss so much you didn't quite change the same way.

 I don't know what I think of it all.... but I do know that I have a headache the size of Alaska! Yeah, it's bigger than Texas.

I'll just be rolling onwards.

Oh I Am Mad.

 I had to purchase a new tablet if I wanted to continue with the digital world and.... My last one wasn't very old but I had to find one in the same format because I operate on my own memory instead of sight for the most part.

I have been not doing well, I can't seem to get over a stomach bug.

Oh but I am happy...... because grandpa is getting better!

I have read so much braille I literally have calluses on my fingers so I better get over this bug!

It's Been Difficult, I Continue Onwards

  Soooooo...... lots of seizures, epic ones, times of vomiting and just being out of sorts. I hate Gastroparisis or however it's spelled! I do hate seizures and just just just......I am really struggling with not being able to see honestly.

My hair after five years has finally grown enough that I feel properly covered to go without a wig or a hat , I am glad about it and a little surprised.

Not everything is bad I am...... humanly frustrated.

I am afraid because my grandpa broke his neck, but he is a strong man.

I read my Braille Bible and I pray.

I pet the dog and line up my dolls like I do.

I don't know what to do with myself as much, can't respond to letters so well anymore and I am amongst the tribe of the paper people and I love it truly however I cannot see what I write.

I love my grandpa.

I leave it to God.

She Smiled Away But She Wasn't Okay....But Smiled Away Because She Could

  Pain , seizures, a fall, Botox because of Dystonia and somehow there's a happy place?

 Smiling, laughing why???

I quite frankly don't know.

A car ride? No.

I like the doctor..... and he knows who Robert Liston was.

That's cooler than cool.

Yes, perhaps that's a lot of it.

My cousins did visit me before they left.

Plenty of reasons to smile really.

And when I finally came home gifts from friends were waiting in the mail.

Seriously there are things that lessen pain, and joy is something intoxicating.

Mere Dreams

 

  Oh how I miss the cabin in Virginia that is no longer mine.

It was a mere dream to live there.

No phone reception, no computer and no television.

Simple ,  and thoughts are not easily interrupted.

But it was just a dream, it was fleeting.

Like my parents marriage, my ability to walk and see....and so many other things, they drifted away.

And my life is drifting.

Seizures here, seizures there, and everything is mixed up good.

This I do not enjoy.

I will hopefully wake up someday and it will be over...no more drifting.

Until then I will be rolling onwards.

Going Green?

  So I was having some issues with my old wheelchair, it was moulded to my shape years past and I weighed about twice what I do now.

It took over a year to get it and I used it for years but my scoliosis is worse and it was hard to stand sitting in there very long....and it didn't fit in the car.

I took a risk, I found this tilt green padded chair for kids from China on Amazon...the chair is nearly perfect, my torso is a little short.

It's a 14" chair and just fine, it has breaks at the handles and breaks for me.

This is going to be hard for you to believe possibly but I went slightly crazy and popped a wheelie and dented the anti tip wheel place a bit.

This is my favorite wheelchair I ever had!

I was sad I couldn't get pink but hey, colors are not everything.

Also there's something people need to understand, if I am laying in bed and you visit me, sitting in my wheelchair is not appropriate. I had someone damage one of my chairs and they laughed about it, it's seriously my legs. Don't break them.

If you want to sit on my chair I can tell you the weight limit and you better not lie, this is no game.

Yup that's about it.