And she was Different

 Still fighting same issues and more issues.

Strong but not so strong.

Survival mode.

Confusing.

 

   I'm just frankly confused about myself.

   I mean I used to have pretend cookouts for my dolls and Teddy's and it was a easy thing to do but it's not anymore.

I had to feel around to get everything together.

I had to guess if that pretend light was on or not.

Mostly I wanted to get a picture of my cookouts for a friend but.... I'm in the dark mostly.

Mostly........... but less so than one would think because I know more or less where I put everything last time and my Teddy lives in my bed and the doll, Sadie Grace she was with some doll friends in the corner where I put her last.

I'm having a more difficult time than people think.

They think I'm really adjusted but what's adjusted????

I don't like not being able to see. 

I manage okay.

There is one thing that no longer bothers me, I do indeed have a braille Bible and I can easily read it whenever I want.

I used to be confused as to why I couldn't see my Bible any more...I don't know why but I immediately thought perhaps God was mad at me.

Braille is different than reading you know, it's more beautiful it's colorful... it's literally like a drug. I haven't heard about anyone else experiencing such a thing..... sometimes I read it so much my fingers callus.

Is this bad?

Is this my way of trying to find more light?

I am desperately confused about myself.

Rather strange things to go through I suppose?

Shiva

 So I haven't been well,

More so than usual because I caught the flu or something.

It takes me quite awhile to get over that sort of thing and on top of it there's

the seizures........

And today part of me broke inside.

I was sent an email last night to sit Shiva for someone I never knew yet effected my life.

Times are strange and unfortunate, it was through Zoom.

How do you even sit Shiva through zoom?

My Mom said she found the idea completely disrespectful and had no idea how it was going to work.

Well I guess I didn't have to worry about it, I ended up in seizure land.

I'm not sure what to do about this.

My Mom said they will probably email in a week or so about where we can send a card or letter.

I hope I can do something.

Life is ever so complex.

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.

Feeling Lost

 

    

  So quite a bit of my life has been spent, lost in seizure land or perhaps Never Neverland... and I wake up and realize that everything has gone onwards, I go onwards in my own way but it is definitely not the same.

  People grew up and have children now and I begin to wonder if this is how Peter Pan felt looking into Wendy's window only to find she had a daughter of her own, that Wendy grew up.

  Some of my most recent adventures are stories in my own mind as I lay upon my bed, grand adventures of discovering a zydeco music in the middle of the forest with long lost cousins and rowboating to an island where you need not speak but simply look into the eyes of those who live there and if you are strong enough you will hear their stories.

 Lands of swirling sticky bright colors like a melted lolly that twinkle like a wind chime.

Lands where I must travel to alone....I meet strangers.

I am a time traveler and I can go forwards and it's very exhausting....but I don't very much know what to do about the lands my mind brought me to.... and when I come back, this world is so dark and blurry I am really quite honestly out of sorts.

Camp G.L.O.W. and a Glimpse Into Last Summer's Projects

  Last summer I was very thankful to attend camp G.L.O.W via the internet, it is a Catholic camp for people who have disabilities and it stands for God Loves Our World, I really wanted to make some friends but this is something of a challenge online but I consider them friends.

I wore the same wool environmentally friendly dress 100 days for a challenge in sustainable fashion, it was extremely easy as for many years of my life I didn't have a full closet, I received a red reward dress in the end. I wear children's size clothes so I was wondering if I could even do the challenge but they make my size from Wool&, if you want to see my reviews on the kids dresses I have they are posted.

I worked with the Love One Another Project creating stickers and I made really cool donation jars for Patch Adams, I was in some newspapers and spoke to a school class online.

My eyes are not working like they did, I have more issues breathing and a lot of seizures but hooray for my Mom who literally saves me from slipping into seizure land forever.

Say What Happened To That Compassionate Doctor?

  Well he helped me out with a lot of things that I needed including a VNS and IVIG but something bad happened, while I was there getting my IVIG....Men with guns, the DEA raided and he eventually had a different practice but it cannot work for me because I'm on government healthcare and it's not really covered in that state...not to mention I get nervous there, but I like him fine!

I have had other Neurologists but currently I don't, my previous one left and one in between was very knowledgeable and found out more about me but nothing he could treat, I think he was quite elderly....I don't know if he's working still.

When it comes down to it I take my meds via feeding tube and the VNS probably needs new batteries however last time I was in hospital it was a 25 pound weight gain before they would do surgery, they don't think I will wake up. I just don't know how that would happen. There is a reason I have a feeding tube.

Hey but here I am alive.

What Makes Life Fair?

  Something that I often feel awkward about is being around people who think things are not fair and they are over the age of 10. 

It's really weird for me to hear a person who is a grandfather say something isn't fair, seriously I can remember saying that something wasn't fair one time in their presence as a child and they said life isn't fair and never let me hear those words come out of your mouth again or your gonna get it.

I don't get it. My own body rebels against me but everyone unless you die tragically pretty much faces their own body degrading and I honestly just try to adapt.

There is no reason I deserve it any less than you.

Here is what I think , we are not entitled to a good job or a body that works.

We are not entitled to own a house. We do our best and make do... whatever the circumstances are.

I personally don't have a job or own a house, have a husband or legs that work.

I do believe with all my heart that we are supposed to make the world a better place, handing out stickers, trying to help Patch Adams get money for his free clinic.

Writing to someone in an institution because I might be the only one who sends color in their world.

Learning Braille so I can keep reading.

Starting a petition for American Girl books to be available in Braille because only the original one's are and I want to read all of them!

Treating each other kindly and with respect doesn't always mean I will get respect and kindness but guess what?  You just have to be nice. 

Maybe that's not fair but you should be able to rise above.

But we all fall down we just need to get up.

.https://www.change.org/p/parents-disability-rights-activists-mattel-let-s-make-american-girl-books-have-a-braille-option?recruiter=765277459&recruited_by_id=ffa646a0-8775-11e7-80aa-3d1614ac0231&utm_source=share_petition&utm_medium=copylink&utm_campaign=petition_dashboard

 As I learn To Read Braille...

As I learn to read braille I think about all those colors my book mentioned, had I been born blind I would find those sentences really boring. I can see fuzzy colors, and I know colors but if I didn't ,well I think about all the ways a writer could describe colors using other senses, I think blue smells of a spring day...or perhaps it feels of a jump in a cold lake, the morning before the sunrise. Dark green could be like fresh spinach ( yes I remember what that tastes like), the smell of a fern or a mossy forest.

I figure you're probably lost with the time lapsed between blogs, well.... my parents are divorced, the mill closed, my brother is married, I have nephews. 

For environmental awareness and as a challenge I wore the same grey children's dress from Wool& for 100 days this summer.... It was easy because I am mostly a dress girl.

I attended Camp G.L.O.W. this summer via Zoom which is a Catholic camp for people with disabilities... I wanted to go in person but that wasn't an option. 

I got involved with The Love One Another Project and helped with sticker art, also spoke through the internet to a school class and ended up in the Newspaper... 2 different times actually.... 

Tried to get donations for Patch Adams, yes much has happened.

So I made a lot of friends through the dress challenge and the stickers...

You probably wonder about my health, well it's not the same...but everyday is a new one.

I never know what tomorrow brings but you don't either. So no matter what happens we gotta just keep on rolling onwards .

When I Am Silent

When I am silent this does not mean I have nothing to say, it just means that sometimes it is really difficult to say the words in me  or that sometimes with all my meds it feels like my head is full of sealing wax and  duct tape and a buch of brightly colored yarn and by the time all these things start to unravel from me it is time to be drugged again. What am I to say??? I say nothing for everything is stuck in this strange reality. and when I have come away from being a drugged I feel myself falling backwards into seizureland and I must admit this strange feeling that I shall not come back is rather annoying. I don't want to go away right now.

How Mommy Found Me A Compassionate Doctor Who Would Hear My Cry...

 Neruologists can be a very frightening bunch and even though some just said I was too much for them to take on, it was not helpful and things only got worse....but then it actually finally got to the point that some mean and rude doctors knew that I wasn't a fake...I have been called that before.
 I believe that they just didn't know how to treat a case as mine so they probably decided to just let things go even if taking no action was worse.
So where did my mother find this most compassionate person who works hard and cares for his patients?? The good old phone book.

This is not to say that I have not found great men who treated me kindly at hospital and a Muslim man granted me great kindness and mercy before, I cannot judge a man because of religion for we all are sinners and all have bad days... I just wanted the grown up world to be the way my mind thought it would be and it leaves me disturbed... But that's how sin is.
I still have much to learn and I am not saying that I thought Christians were better than anyone else is in their own human ways. I just guess I truly am stupid to of ever thought people were kinder to each other.