Disabled Living, independent living

Epi-Pen Refill Day

Why the heck did the pharmacy technician give me a bitch face when I asked her to dispose of my expired EpiPen when I picked up my refill for this next year? I mean, is it not a GOOD THING that I went a whole year without needing to go to the hospital? Is it not a GOOD THING that I didn’t have to resort to being stabbed with emergency epinephrine so I didn’t die?

Personally, I consider every year I have to throw out an expired EpiPen that hasn’t been used a victory! So I don’t know what the heck is wrong with her… 😒

I understand there’s a shortage right now. I understand that there are people who need them much more than I do. I haven’t needed to go to the hospital for Shellfish for a few years now, but that doesn’t mean the allergy has gone away.

It means I strictly limit where I go, what I eat, where I eat, and how close I get to anything or any place that could be a trigger. It means I wear a respirator mask when I pick up produce and deli cheese at Superstore so the fresh fish section and lobster and crab tanks don’t kill me when I need pizza mozzarella or salad lettuce. It means I don’t eat out. It means I try to stay away from food courts and I haven’t ever gone to a Joey’s Only, and you will never catch me within 50 feet of a Red Lobster.

I didn’t need to use my Epi-Pen last year because I am careful as Eff.

That should be celebrated shouldn’t it?!

But I understand about the shortage. Which is why I let them put me near the bottom of the list, and it took almost two weeks for me to get to the top of it.

And yes I had a few close calls in that time.

But I understand there are people out there with allergies worse than mine and they needed their life saving emergency Epi-Pens faster than I did.

So why the bitch face?

Especially when she had just finished telling me to bring it back to them to have them dispose of it. *eye roll*

Personally, I think that was uncalled for.

Child Abuse & Trauma, Disabled Living, Invisible Disablity, Personal

Appointment #1 with the Neurologist (Imposter Syndrome)

About 6 weeks ago I went to see my Doctor and I told her that I was concerned with my balance. I have always had bad balance. I can’t walk a straight line to save my life, and never have been able to. I was always being scolded as a kid for being clumsy. I’ve always been bad for walking into walls and doors and tables. Heck, I was almost 8 when I finally learned to ride a two-wheeler bike (and it took a LOT of work and two ruined pairs of jeans and gravel embedded in my knees and palms for weeks afterwards).

But recently it’s been getting worse.

I’ve always hugged walls, but I have caught myself muttering, “Don’t fall” to myself way more often lately than normal. My balance has always been crap, but it’s gotten worse lately. I’ve been more tired lately, and getting tired more easily. My stamina is crap. My hand-eye coordination has never been good (mostly because I’m monocular) but it’s gotten a lot worse. I’ve noticed I don’t walk with the same purpose I used to. I’ve started to lumber and shuffle and I’ve been tripping over my feet more. And then there’s the vertigo and the seeing double (most of which was fixed with a new set of lenses in my glasses, but having to replace your lenses after only a YEAR isn’t a good sign in general).

All of these things together are signs of Dyspraxia.
Among other things.

So I brought this up to Dr T and she agreed with me that I should see someone. Dr T being amazing, within the week I had a call from a Neurologist to book an appointment. That was for two weeks ago, but I had to call and reschedule on the day because we were under a heavy air quality advisory because of the smoke from the forest fires out west. They were lovely about it though and rescheduled me for today.

And that’s where the anxiety is coming from today.

Because, see, I know that this is something that should happen. Things that I’ve always had to struggle through have suddenly become noticeable symptoms and they’re getting worse. I know that ASD and Dyspraxia can overlap a lot. I know that I have shown these symptoms my entire life but was never listened to and never taken to the Doctor to have them looked at.

But I’ve been having these runaway nightmare thoughts. I go to the Neurologist and he gets me into a FMRI and then says, “Your brain shows nothing wrong. In fact you don’t show any Autism-related brain architecture. You’re a LIAR. You’re a CHARLATAN. You’re just pretending. You’re playing the pity card and playing a part you psychopath! You don’t deserve your Disability Status. I’m passing my findings on to EIA-D.”

And then I lose Disability. And then I lose everything. And then I die on the streets.

Yeah I know. That escalated quickly.

But that’s where my brain has been going as we get closer and closer to today, and I’ve honestly started thinking maybe I can just live with it. Things have gotten worse before and I just adapted. I can do that again, can’t I?

The logical part of my brain knows that’s ridiculous. The logical part of my brain knows that Imposter Syndrome is something that comes from a lifetime of gaslighting. I was silenced and discredited so many times by my parents with Doctors and Teachers and Councillors that I have come to realize that I don’t even trust my own sense of reality. Decades of my parents saying, “Sascha has a story-telling problem. Sascha has a truth problem. We’re so sorry. She tells these stories…” when confronted by people when I would finally crack and tell people what was happening at home and ask for help. A lifetimes of that from other people and I’ve started actually doing it to myself it seems. I don’t need them there to gaslight and discredit me. I know the script so well — it’s so well ingrained in me — that I do it myself.

So I head out on the bus in a couple of hours and I’m trying to calm myself down and remind myself that I am not a liar and a cheat and a fraud and evil (and down the spiral goes). That this isn’t about the Autism (which has been diagnosed TWICE and confirmed by no fewer than FOUR other Psychologists or Doctors so, as Dr P puts it to me, “No one is that good of an actor, Saffron”) it’s about the other symptoms I listed above. Things that have always been there, that I’ve never had looked at or treated, and they’re getting worse. That’s what this is about. The Neurologist is there to help me find answers, not discredit and destroy.

And I know that.
I know that.
The logical part of my brain knows that.

But there’s that niggly little whisper in the back of my head…….