Unspoken rules of blogging

Incase no one has shared the unspoken rules of blogging


1. Don’t be an asshole on someone else’s blog

A. If you do not agree, say nothing

B. If you have a different belief, keep it to yourself

C. If you plan to cause upset, start conflict, cause distress…DON”T

D. If your intention is not to be completely supportive and understanding, go somewhere else. Really!

2. Understand that blogging is NOT Facebook. The comment section is not for debate or argument.

3. If you stumble across a blog about :

A. Eating disorder

B. Rape

C. Trauma

D. Loss

E. sexual abuse of any kind


G. Chronic illness


4. Don’t tell the blogger what they SHOULD be doing with flippant comments such as:

A. Everything happens for a reason

B. Maybe you are overthinking this

C. Why don’t you just let it go

D. Why don’t you just forgive the person

E. Choose to be happy

F. Choose to leave the past in the past


5. Don’t follow the blog that you don’t really care about just to have that person follow you back so you can get more followers.

6. Keep in mind that most of us are putting our heart and soul into the words we are sharing. We have had advice from many, we have seen doctors galore, we ALREADY have therapists, and what we really want to feel is heard and understood. HEAR AND UNDERSTAND OR LEAVE.

7. Lastly, and most importantly, AGAIN, DON”T BE AN ASSHOLE!!!! Don’t leave an upsetting comment because you are in a mood. Leave that mood at the door and only read a heart felt blog if you can share understanding words. Or maybe just give it a like of support if you can’t find the right words. But don’t push an already fragile struggling person over the edge who is vulnerable by being an asshole. Really. Just don’t be an asshole

#University of Florida campus

Today my husband drove me around for some car photography. We got caught in a huge storm so I did some great out the window photos. At the end I was able to get in my scooter for a few pictures of lake alice. For my friends “across the pond” I hope you enjoy!

Poetry/true story/Ebb Tide

I used to wonder

What is she thinking

As she stared out over the lake

Her eyes glazed.

It’s like another time…

She’d smile when she saw me

“Bethy, would you play me Ebb Tide?”

I would climb the step ladder to reach the keys

The electric organ was too high for me

I felt I never played it

Just right

To bring back the light in her eyes

I’d always give it another try

I was one with the notes

Reading the music

From very old brown sheets

I think that song became a part of me.

When I came back to her

She was always turned

Waiting for me with a smile

As I returned

No longer lost in her stare

She was fully present

With me sitting there.

Then immediately up making sandwiches

Picnics under the grape arbor

Swinging in the hammock

Filling my life with utter glee

Nana and her little Bethy

I used to ponder

What was she thinking




As she stared blankly

Yet deeply

What was she waiting

Or wishing


I look out my window


And I stare

I connect to her

See her

Sitting there

35 years later

I know what was missing in her soul

It’s absent in me as I grow old

Now I know

About the sorrow

About the hope

About the losses

In time

So tonight

I searched for that plastic bin

That had those precious memories within

I traced the words I’d never read

Following with my finger

The melody in my head

I finally heard

And understood


She asked me play for her,

Ebb Tide.

I had no idea Invisalign would trigger PTSD

I’ve had a very unpleasant week to put it lightly. I went to the dentist last week due to pain in my jaw to find out it was due to muscle spasms with my muscle disease. Also there was atrophy in my face causing my cheeks to get torn up. So, we proceeded with invisalign. This would straighten my teeth, make sure they don’t get damaged with seizures, and make room for the atrophy. All sounding perfect.

Then the orthodontist put these anchor type things on each tooth ( if you have MCS DON”T DO IT!). After that we put the trays in top and bottom. After leaving the office I realized a LOT too late. Normally, I got home take a shower, wash all smells off. Wash off the triggers of the day. Well guess what you can’t take off, invisalign trays!!!! Or the anchors on your teeth! They are there for the long haul. So my logical mind tell me that this is something I must do to protect my teeth and cheeks from the atrophy and the seizures. PTSD has no room for logic.

I came home and showered and had one of my biggest triggering days ever. There was unexpected things with the orthodontist and the invisalign I was not prepared for. The chemical smells from putting the anchors on and more. I have been on overload.

On Tuesday I had an all out panic attack because I could not get the trays out of my mouth and my jaw was locked shut. I worked as hard as I could to get them out but I don’t have the strength in my fingers and when you first get these they are very tight until your teeth shift.

My sweet daughter finally wakes up and I toss her a pair of gloves to put on and say GET THIS OUT OF MY MOUTH. God love this child who put the gloves on and took these bastards out of my mouth after I massaged my jaw enough to even open it. I completely flipped. She calmly told me that even if I did not have PTSD that I would feel trapped by these trays being in my mouth and that many people feel this way. All of this was very calming and kind. But I knew I had to put them back in.

They hurt like a bitch. Mean truly. My lips and cheeks are full of sores and my teeth feel like they are being yanked and smashed.

NOT GOOD FOR PTSD. Just not good!!

Today I had to go back to be reassured by the orthodontist that everything is as it should be and she assured me that it was. She gave me some options for dragging this out in a doable way like wearing them only at night for a few weeks. I cannot prolong this though.

The orthodontist asked me if I’d had braces before. And the words just flowed right out. “I had them at a time I was sexually assaulted and I’ve blocked out a lot of those years out so I don’t remember having them.” I can’t stand up for myself, freeze, can’t speak when triggered, but if I go in prepared then I can just speak my truth right in the moment and I love that I can do that.

I have no recollection of braces but I am told I did have them.

This week has been difficult. I’ve barely eaten or had anything to drink. My husband bought me a lot of mush food, because he is thoughtful and loving, but just taking these trays out has been too much, knowing I had to put them back in. So I have boycotted eating. Which you’d think with a past history of anorexia, I’d be thinking ok great, lets fall back into old ways. But I don’t WANT to fall back into old ways and I’m increasingly distressed over the muscle atrophy and weight loss. I’ve been feeling frail and HUNGRY. So great. I’m hungry, wanting to eat, and yet cannot.

I’m sharing my week with invisalign and PTSD because this is all a learning process for me. I want to share my learning with others. I’m not sure if someone else with trauma would feel the same as I did with the feeling trapped and confined and in pain with these trays being triggering. But I want someone with PTSD to be able to make an informed decision on putting something on their body that will be stuck on them.

I’m just praying I can overcome. It’s day 5 now and I still want to cry and scream. I feel violated by TRAYS!! I mean seriously. Who would have thought! But I do.

Hence my red flag days this week.

I went to an appointment with my daughter that was a four hour appointment and the entire time I kept thinking, “ I can go home and shower and get in bed and rest my muscle pain but I still have to have these stupid trays in my mouth.” I kept trying to turn it around to positive self talk but the triggers are too strong and the pain is overcoming my ability. Had we not paid the 5500 dollars (which I kept reminding myself of) day two I would have taken a hammer to them. Knowing that I need to fix my bite to protect my teeth from seizure and atrophy damaging is my only positive keeping me from bashing these things.

In the mean time I tore off all of my cuticles down my fingers. My husband asked me if it was like cutting and before even thinking of the answer I said yes. So I guess yes is the answer. Yes. Yes is the answer. I tore off all of my nails and my cuticles and my hands are a stabbed bloody mess. So as not to continue this I have decided to write on my blog. It’s prime self harm time at midnight. I’m not going there though. Meds are not helping, distraction not helping, so I am tossing this out to my blogging tribe in hopes of some love and understanding.

Fake followers

It’s so frustrating to see that I have all of these new followers just to discover that they don’t actually have a webpage, they are selling viagra, they are real estate agents, they are selling weight loss products, they are selling work out equipment, the are selling lawn mowers. This is a blog where I put my heart and soul and life out there for a dating site to then follow me? What do they think I will follow them back?

I take all my followers seriously. I pick a blog every day and read and read and read just like it’s a novel. I catch up on all I have missed and even go back further on their blog to see old posts that may have been forgotten about but actually really mean something to the writer. I taking blogging very seriously and those who follow me I give my utmost respect.

What a disservice and disappointment it is to spend my time looking into new followers only to find they are fake! Waste of precious time.

For all those that are real out there in the blogging world, I appreciate your support and I appreciate your willingness to put yourself out there with some of the hard topics we talk about. I do truly appreciate my REAL followers as I consider you friends.