They forget…

Forgotten, you’d think I’d be used to this feeling; the aloneness, the out of sight out of mind, feeling of being forgotten.

I think I did get used to the version of forgot that my life had became when I was housebound. But I’m not housebound now.

Now I am able to go to the store, the pharmacy, book club. Now I am able to do light house work and keep it fairly clean. Now I am able to do the things I love doing.

BUT…

But I am still a chronic-hot-mess. I still have days (like today) when I cannot get out of bed, cannot lift my own head, cannot speak in complete sentences. I still have down days.

They forget.

They only see tiny glimpses of a post or a text, maybe even a 3 minute phone call, they may see a bit of me in person before the drift off to sleep, but in their own world they don’t really see me.

So they forget.

They forget my pain won’t go away. They forget my fatigue won’t go away. They forget I’m still sensitive to stress. They forget I can’t handle heat or cold. They forget I have triggers like loud places and lots of people. They forget I am not well. They forget I am Chronic. They forget every day is a battle. They forget that because I am out of bed it doe not mean I am cured.

They forget.

They forget.

They forget.

I stayed in that bed for years, forgotten and alone most of the time. I wasn’t expecting to find a new version of FORGOTTEN.

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A video about AI

No I didn’t create the video, but I am thankful to whoever did!

It’s a good watch for friends and family!

It’s a good share in case you or someone you know could be one of the undiagnosed.

Testing for AI is simple! I will never understand why it isn’t more common. Especially when there are existing conditions that could be the cause.

Here is the video.

Awareness is part of the battle.

Paramedic Introduction #1

So last night I got pretty riled up about a controversial subject! I am going to talk about it here, now, but I want to make one thing very clear… I do NOT value one life over another! Don’t make this into that! We all have our histories and reasons for being one way or the other on this. So again I DO NOT VALUE ONE OVER ANOTHER!!!

With that said. It has recently been announced that our local law enforcement/ paramedics are now able to carry and administer the life saving drug that neutralizes a drug overdose (for free to the patient!)

But did you know that most ambulances across the US (world maybe) cannot administer or carry SoluCortef, the life saving drug that I would need in an adrenal crisis and it most certainly would not be free?

Did you know that paramedics in some places (here for sure) cannot administer a life saving epi pen injection to a 4 year old having a reaction to peanuts.

I don’t know the diabetic rules but I am getting the impression it’s the same.

And this pisses me off in the worst way!!!

They cannot even administer my own injection to save my life.

I did not ask for this disease! I suffer daily! I pack around this Emergency kit to save my life! I wear the medical alert bracelet! I limit my activities! I am doing all I can to NOT die! And I cannot be helped in an emergency.

What kind of world is this? Seriously!!!

Emotional rationality is going to get me nowhere, so I’ve been asking questions and did find out about an organization Danny’s Dose that I plan to do something to help.

I also went to the local fire station today! Long story short; 6 curious paramedics asked a lot of questions but in the end didn’t know if or what they could or couldn’t do. So they sent me to the Main Station to talk with “the man with the answers,” who was also curious and took notes but again didn’t know the answers I need. But. A meeting is happening Mid month and this topic is now on that agenda.

In addition, my address has now been flagged as a priority with instructions. So that’s good.

I am not letting this sleep. I am learning of so many rare conditions and people who could have been helped had the paramedics been allowed to assist them, I am going to do something to help.

So today was Paramedic Introduction #1.

Oh. And we talked about ID bracelets, yes they notice and read them. But the ones on the fit bit just look like part of a watch and they would never have looked twice. Good thing I wear both! I also have a tag on the outside of my purse directing them to the pocket where my injection is, they like that.

I’ve been lucky to not need the use of the paramedics due to an adrenal crisis, but if I ever do I hope they are allowed to do what is needed to be done to save me. A simple injection! That I provide. That is far from FREE! Prescribed by my doctor.