Category Archives: disability

It’s NOT Catching

Yesterday was a hard day, mentally, for me. It was hard in a lot of way.

Yesterday, Bear and Squirrel (lol… sounds like the start of a children’s story) needed to get blood work done. Nothing scary… just that time of the year again… so… yeah. We found out that you, now, need an appointment to get lab work done (okay… maybe not need, but highly recommended). Turns out it was HIGHLY recommended… there were people there waiting when we got there that were still waiting when we left. Bear’s was fasting so we went early as I could get them there.

When I go for my infusions, they have the waiting room set up so that people are actually 6 feet apart. There are “couches” (longer two together chairs) for people who live together. There are socially distanced chairs.

The phlebotomist lab…. not so much.

There are chairs back to back. There are couches back to back. They took out every other chair. There actually is just enough room to push a wheelchair between the chairs in the middle of the room…. barely.

Back to back chairs… I guess that implies that you don’t ACTUALLY have to socially distance if someone is behind you? I guess that implies that six inches equals six feet?

Removing every other chair… I mean… they aren’t airplane sized seats, they are doctor’s office chair sized… but… taking out every other one… that is what… somewhere between 2 1/2 and 3 feet…? And the office was pretty well packed.

That was the start of the mentally not goodness.

But then… I’m pushing Bear in his wheelchair. He has on his mask. He’s not coughing. He’s just sitting with his oxygen strapped to the back of the chair and the canula up his nose. I pushed him as far away from people as I could (which was an adventure in itself). I found a chair that was empty with a spot beside it and a table next to that so… it was kind of as good as it was going to get.

There was a youngish woman sitting in a chair across the “isle” from us. I pushed him past her to get to his spot. We were probably 4 feet apart (best it was going to get there). She was sitting back to back against another woman in the chair she was in… so 6 inches MAYBE there.

I parked Bear and she kind of flipped shit. You could almost see the panic in her eyes. She got up and moved 6 feet (maybe) to sit back to back with some guy.

Because bear (73 years old and on hospice and on oxygen) was sitting (mask on, oxygen on) further away from her than she was with the woman behind her to begin with or the man she moved behind.

He is not contagious. Old is not contagious. IPF is not contagious. Wheelchair reliant is not contagious.

I’m so freaking irritated. No one was coughing. You have to have a mask on to get into the clinic. You have to have your temperature taken to get into the clinic. I mean… you can always lie about having been exposed, I guess… but…

It hurts my soul that people think handicapped people are overlooked… are not seen (or pretended they aren’t seen)… treated, in general, like shit.

If you’re one of the ones who thinks that a wheelchair and oxygen and 73 means they have cooties, I’m really glad you’re perfect. I’m glad that you don’t have anything wrong in your life. I sincerely hope that you stay perfect for your whole life… I hope you never have to deal with having an invisible disability (me and my RA). I hope you never have to deal with having a (or loving someone with) a visible disability. I hope your life stays as perfect as it obviously is.

I just don’t understand. And now with covid and the fact that people who recover are going to likely have residual either temporary or permanent disabilities. There are going to be how many more thousand people who are going to be treated like shit?

I’m really glad, right now, that I am already invisible. I got used to be invisible when I was obese. I am used to having an invisible disability… that I only have to cope internally with my crap and not something that people can stare at or stare through.

It hurts me that Bear is going through all of this… everything that has changed in his day/world. He keeps trying… I can’t imagine how much all of the changes are hurting him. Adding insult (almost literally and completely) to injury of having people OBVIOUSLY trying to run scream away from where he is hurts MY heart, I can only imagine what it does to his heart.

Add to that we hit an all time high in covid numbers in Ohio… and you get a really not so great kind of day.

But… today is a new day, I guess. The numbers will be down today because it is Saturday. I’m starting to feel more accomplished because I’m making progress cleaning the basement. I have to keep trying to shake the Debbie Downer-ness that is going on in my head.

99Walks is really helping. Making myself walk is helping. Spending time alone with myself is helping. The moral support I get from the 99Walks Facebook group (is it shallow that the positive feedback makes me feel good?) is helping. I hate taking the time away and leaving the house because I never know what might happen with Bear when I’m not here. I need to work at my training for The Goofy/Dopey for 2023 for myself… but… this whole year has really messed with my morale.

WW Zoom meeting is over… Time to kick it into gear for Saturday.

Love and Light
AprilJoy
7/18/2020

Doing Disney 2019

Five years ago

So… In just a short time, we will be heading out and doing Disney. No, not today, but frighteningly soon (Squirrel and I looked yesterday at the Run Disney page and saw how close the race weekend is). It’s hard to believe it’s here already. It’s hard to believe how much things have changed in such a short time.

Life is short

It’s prompted me to look back at the past year that I’ve been working on getting more healthy, getting more fit, improving my time. It’s been quite a year and I can’t believe that it’s already almost here.

This year, I’m making a concerted effort at capturing the entire trip (good, bad, indifferent, scary, ugly, whatever) because… well… because.

This year we will be doing Disney differently in a few ways.

  1. Bear is handicapped. He’s renting a scooter instead of trying to fly his scooter to Florida. I’m INCREDIBLY happy that he’s made this decision. It’s going to make the airports a little less elegant, but it’s going to be less stress making sure the scooter is safe. We ordered Oxygen to be delivered to the hotel. So he’s not going to have to carry his big blue monster with us. He will have his portable and with the scooter, that should be good. He never thought he would make it to Disney when we booked this trip 11 months ago. I am glad he was wrong.
  2. I’m doing this trip as Lifetime on Weight Watchers (WW). This is going to be most interesting. I sucked it up this morning and bought a travel scale. It fits in a backpack and weighs very little. I’m determined that, when I get back from vacation, I’m not going to have gained much if any weight. Given that my next infusion is my last infusion for at least two months, I really really can’t afford to gain much while we are away. I will gain enough from not having my infusion for that long. I really hope the surgery on my weird elbow lump is worth it.
  3. Three races in three days.

So, I’m planning on chronicling everything as we go. I’ve spent so much time digging and digging for information, I want to be able to pull together what I’ve discovered with what I learn so I have one place for it to be.

Spent yesterday (most of it) packing. I will spend a good chunk of today packing and repacking as well. I want to travel with the least amount of stuff as I can. We always take too much and I know that I already have too much packed. I’m so used to packing for any eventuality and there are so many unknowns and eventualities this time. I need to pare it all down so I know we are good… and still don’t have to pay a billion dollars on overweight bag fees.

I will probably repack ten times. sigh…

I’m up for this (kinda)

I know we can do this (sorta)

Love and Light
April
1/27/2019