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I want to see how this works…

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I saw this on Facebook. I want to take it a step further. The original post had 500+ responses…. I just wonder

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Sometimes too many coincidences aren’t coincidences

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October is my favorite month of the year. This year… October has colossally sucked. It has also been one of the hugest blessings that has ever come into my life. I will never be able to move from this house. … Continue reading

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When Everything is Said and Done…

When everything is said and done… and when the end has ended… the world still continues to turn but now it just seems so much emptier and so much quieter. So… today starts the third day that I’ve had to … Continue reading

Just What Exactly Does Normal Mean?

I guess it would come as no surprise that I come at things a little differently. I figure everyone looks at the world through little different lenses because no two people are the same, not even the ones who grew up identical twins. That being said, my kids both know that, when anyone talks about normal, the only think I know of that is normal is the setting on the dryer (the washer too, depending on your make and model). Even normal body temperature isn’t “normal” just average.

So now we are 6 months in to Covid 19. I live in the United States, so I guess that makes me part of the “me” country. Yes, I realize that we are who most of the rest of the world looks at and shakes their heads. I look at us and shake my head.

We fought the good fight for about two weeks when two weeks was what was set out as the game plan. But people got stir crazy. People wanted to go back to normal.

What normal are they wanting to go back to?

Unemployment benefits are being paid out at often well over what people were making while employed. There was a moratorium put on foreclosures and evictions. People who had never even thought of using a food bank before had to start to rely on food banks. People who never ate at home with their family around the table started to spend time with family around the supper table again.

Unemployment boost (the extra $300, $400, $600) will end. People who are unemployed will have to subsist on what “normal” unemployment is again. The moratorium on not losing your home because of back rent will end… and if you can’t make up all of what you owe, landlords and banks will be able to process the evictions.

What “normal” will that leave everyone with? What will “normal” now look like for those families?

People want normal schools.

People want normal lives.

People are demanding normal Halloween.

“These kids deserve normal” (Kids, from what I’ve seen, seem to adapt far better than their parents)

“I want my kids to grow up the way I did” (Take away the electronics then, go back to board games and four channels on the TV)

“If any sheep wearing masks come to my door trick-or-treating they will get nothing from me” (I kind of like the picture of mask wearing sheep… but that’s just because my mind works a little differently)

“People call this the new normal. There’s nothing normal about this!” Why? Shit changes. Shit changes every single day. You don’t like it? Okay that’s great. Start being part of the solution rather than being part of the thing that is getting the US laughed at.

Fifteen years ago, my normal changed. I went from being obese and trying to get in better shape running to having the rug ripped out from under me when I got the phone call that the lump on my finger wasn’t a cyst it was RA and oh by the way I had been having active RA, at that time, for about two years. I was moderate to advanced already. HA. So there.

Enter drugs that dumb down my immune system and enter singing happy birthday twice every time you wash your hands and oh yeah carry hand sanitizer everywhere and clorox wipes to clean off the tables in restaurants and finding creative ways to push buttons on the elevator and the soda machine. Enter being terrified to buy lemonade at lemonade stands because kids are kids (and kids ARE kids and they will always be kids). Enter looking at EVERYTHING just a little differently. Enter a new normal for me.

Was it a pain in the ass? Yep. Was I terrified? Yep, still am to a great extent.

Do you have any idea how happy I am that there are now “tools” that are being imagined and delivered that make MY life easier? I have a hook to pull open doors, to push open doors, to push elevator buttons, to not touch a lot of things that I used to look and try to puzzle through the best way to cope? Do you have any idea how awesome I find it that I have fashion choices I can make with masks that I’ve wanted to wear but the paper ones just didn’t work for my head size and the skin under my glasses? Do you? I took a mask I bought at Walmart to my mom’s with a couple technical shirts in hope that she can reverse engineer the mask and make me some sexy running masks so when races start again (and the bitching at Disney for cancelling the January and February races has been rampant since the announcement came out… and don’t get me started on “social distancing” in races and runners on the left and walkers on the right unless I’m a runner and there are too many runners and I can elbow you to the face because you’re walking a race and you’re IN MY WAY) I can wear something that I am comfortable in and that I think looks good.

No, you probably don’t unless you are one of the people for whom this is… WAIT FOR IT… normal now.

Normal for my siblings growing up was having polio.

Normal for my siblings growing up was barn work and putting in hay in the summer and making trips to the store maybe once a week maybe once every two weeks. Normal for most of us was a land line that had a rotary dial not a computer you toss carelessly around like a $2 notebook.

Normal?

You want normal?

And what happens when YOUR normal changes?

I’m tired of rhetoric. I’m tired of being taken for granted. I’m tired of knowing that a lot of the people I live around figure that I’m expendable because they want to go back to what they had a year ago. I’m tired of knowing that (despite the fact that I have a job and I contribute to society) I’m one of the people who should just suck it up and die quicker so the rest of the people can get on with their lives and maybe be able to rely on herd immunity.

I’m tired. Mostly I’m tired of seeing just how little regard an awful lot of people have for each other. I’m tired of the new normal making it okay to name call and bully but hey, that’s a great part of the new normal that no one seems to want to get rid of because THAT is just wicked freaking awesome to be able to completely turn off what filter you had and let your bully flag fly. I’m tired of it being okay to call people sheep because you’re too self absorbed to know that there are people like me living right beside you. Maybe I should COMPLETELY turn off my filter (what little filter I have, any way) and tell people what I think of them and THEIR wicked awesome new normal… but oh wait… it’s bad if I say something to you but it’s okay for you to say something to or about me… I forgot… YOUR normal is good, but only yours.

I don’t know what “normal” will evolve in to but it will continue to evolve. At some people even the United States will be able to claim that we have managed to beat Covid into submission (albeit long after the rest of the world minimized confirmed cases and deaths). At that point, normal will be a NEW NORMAL again. Maybe at that point people won’t be angry at that new normal.

As for me… my new normal is… This morning I noticed I’m starting to go gray. I’m wearing one of my masks around my neck. I’m a little concerned I woke up with a headache but a couple of napproxen and an extra 90 minutes sleep beat it back. For now, normal is waking up on the futon mattress on the living room floor with four dogs for company and checking on Bear to make sure he is still breathing. This morning, normal was putting on a hoody to ‘go to work’ in my office 60 feet from the living room. Halloween will mean bagging up candy and putting several baggys on a table to be picked up by trick or treaters. I won’t make fun of them regardless of whether or not they wear masks. I will wear my mask and keep my distance because I know that there are people out there who are asymptomatic and if I catch it from them I probably won’t be.

And… I’m late for work, but I needed this diatribe. Will anyone care? Those who already care will care. Those who don’t, won’t. And if I get any snark… I just might snark back…

Love and light
AprilJoy
9/23/2020
Happy Fall….

Denied…

I am… lost… scared…livid… frustrated…

Probably not this month… Should be tomorrow but probably not this month…

I have been on Orencia INFUSIONS (that’s when they run an IV into your arm and deliver the meds in the infusion center) for eight years (a little more than 8). EIGHT YEARS… eight years… Six and a half of those years has been with the same insurance carrier… before they got acquired by a drugstore chain… one I’ve had issues with before because my stupid doctors refuse to write my prescriptions in the way the drug store chooses to be able to fill them… and yes, it is THEIR CHOICE to not be able to fill them the way the doctor writes the scripts.

Yesterday I got a letter in the mail telling me that my infusion (the one that was supposed to be tomorrow) was denied. The decision was made in August (woman on the phone let that little gem slip), the letter was written September 8 and postmarked September 9 in Arizona. It took six days to get to Ohio from Arizona.

To start with… it took six days to get me the information that the infusion that I start to really need by four or five days before the 4 weeks are up would be denied… it was supposed to be 9/16. It’s not yet cancelled but it probably will be today because… yeah…

The USPS couldn’t get it to me in less than 6 days. Good thing they are being way more efficient now that we have that shiny new head of the postal service… sigh…

I called… I called the clinic to see what they could tell me… they are working on it. THEY sent the follow up paperwork a week ago when they got the notification that after 8 years the insurance company thinks maybe I should just do things differently now.

I called the insurance company.

I got a very nice man that commiserated with me, but who had to put me through to the mega drugstore chain who owns them and who decided that suddenly they need more information.

At that point I became a very stupid four year old who needed to be patronized. The woman on the phone explained four times that they need more information. More papers need to be provided before they can decide again whether or not my meds are justified. After I got pissed and told her that I’m not a stupid idiot and that I READ on my letter that the doctor needs to provide more information and that, no, indeed, I did not need her to read me the letter again telling me that they just need more information and that I can file an appeal.

I snarked at her. I snarked hard.

She finally coughed up the information that the denial is typically because the doctor hasn’t prescribed the maintenance meds in such a way to ensure a 90 day supply… of IV infusion meds… that get administered in the clinic every 4 weeks… and have been for 8 years.

I can file an appeal.

That will take 15 days for the first level… then they will send a letter… which will make it 22 days if past history is anything to go by… letting me know if it is approved or again denied… at which point I can again file an appeal… and another three weeks later (that makes my 4 week infusion at worst 10 weeks out unless it is completely denied then suck farts old woman).

And all of this came two days after I watched someone dear to me drink a Pepsi… She has RA. She is finally (after several years… after MTX and plaquinil and enbryl and weaning herself off of 7 years of prednisone) pretty much controlled. Her hands aren’t working “right” any more and she has to pick up her Pepsi bottle with two hands to drink it because she can’t physically pick it up with one hand any more.

All of this while I sit and examine the nodules on my fingers that so far aren’t getting any bigger.

All of this while my fingers and toes are feeling like someone has poured hot ground glass into the finger joints and the joints where my toes connect to the big part of my feet.

All of this while hospice.

All of this while trying to hold it together

All of this… all of this… all of this…

And you know, <sarcasm> stress certainly doesn’t make any of this worse and it certainly doesn’t trigger a flare and it certainly doesn’t make me fall apart</sarcasm>.

I have to take walks with bear. It means too much to be able to push his chair all over the neighborhood and spend evenings out and about together. No matter what it takes, I have to push him on our walks. No matter what it takes. Time is so short and so precious… I have to… we have to… no matter what. What if the last walk was the last walk? What if… what if…

AprilJoy
9/15/2020

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Why…

Sitting in the late afternoon shade. The sun is well below the tree line. The grass is cut. Dogs are snoring softly all over the floor. It’s a good afternoon. I’ve been thinking quite a bit the last few days … Continue reading

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The Little Things

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There are just times when something small and seemingly insignificant makes you stop and realize that you are doing something you are meant to do. Coincidences? Signs from the universe? God Winks? Building my little free library has been an … Continue reading

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On Doing Good

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My darling son Monkey Butt has always pointed out that there is a difference between doing well and doing good… Superman does good, people are doing well. Because words have always been a thing with me (thank you to Miss … Continue reading

Gratitude…

Okay, okay, so it’s pretty hokey. I know that, in November, people do the whole… thirty days of thankfulness… gratitude… whatever… I know that ‘science shows’ that if you focus on the positive you end up being more positive.

Once upon a time, I TOTALLY didn’t need any more Mary Sunshine smoke blown up my… posterior. Then my whole world changed. And I lost myself (to a great extent). I’m trying to find that part again that has gone missing.

I started out, in March (I want to vent… I REALLY want to vent. I’ve had it up to right about here with bullshit the last couple days) determinedly writing down three good thing every day. Some days it’s been that I have dogs and coffee. Some days it’s hard to even come up with those. But I keep trying.

June, I started to step up my game. I started to try to come up with 5 good things. Not even, necessarily, gratitude… just five good things. Some days coffee and dogs are still on the list. But I realized something today that I have got to put at the top of my list.

I have started to totally not be able to handle stores. Between people being incredibly rude and people deciding that social distancing and the mask ‘order’ are totally not going to stop them from doing as they please for whatever contrived reason they seem to be able to find I just can’t mentally do it. And now with Ohio’s numbers over double what they were a month ago I can’t do it physically any more either. It’s too much of a risk.

Today, I have decided that cubside pickup, now that I can get a date and time for groceries that isn’t over a week out, is incredibly high on my gratitude list.

Sometimes I have to get creative to get all of the $35 worth of food you have to buy in order to do curbside… but thankfully it is also watermelon season and tomato season and fat free cottage cheese is 0 points and I have tomatoes starting to be on my vines. Today, it would have been nice to have gotten to pick up the order this evening… but it’s all good. We can wait until tomorrow morning for the order. No contact shopping is a God send. That and produce delivery (Misfits Market and Perfectly Imperfect on alternating weeks)… I can cope this way for as long as I have to.

I will still go walking in the early morning when no one is around and at lunch time during my daily touch point conference call (and yes, I will even bleat like the little sheep I am and wear a mask when I walk because I don’t want to take any changes. I don’t want to take changes with Bear’s health. I don’t want to take chances with Squirrels, or Monkey Butt’s or my own health. I’m getting used to 90 degrees and humid while I wear a mask and a buff. I’m kind of over people in general right now and… if people don’t want to accept my choices because they don’t mesh with their choices… then I guess that is something else to be grateful for… knowing who is excepting enough to stay in my circle.

Love and Light
AprilJoy
7/18/2020
OH… and… my keep Squirrel’s head from exploding walk this afternoon means I made my July goal. I am officially a Joyful Wanderer!

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

Taking responsibility for my own safety.

Ohio has started to see a drastic rise in Covid cases.

My county is the second highest county on the “oh crap” scale of cases.

Masks are not mandatory in all public places (I’m still not straight on whether or not the sidewalk in hour housing area is considered public places or not but I’m erring on the side of caution).

Found out yesterday that there are 79 positive cases in my town.

I managed to make it to the bank this morning with Squirrel. I’m probably not going anywhere else any time soon. We have tickets to the Asian Lantern Festival at the zoo for Saturday night. I’m not sure whether we will just suck it up and lose the money or not. Maybe. Bear doesn’t want to live in fear or locked up for the rest of whatever time he has left. If I push him… I can control how close or far away we are from other people. I would like to make these memories with him. I guess the next few days will tell a lot.

Monkey Butt went for a walk last night. The bar’s parking lot had not one empty parking spot. Red Lobster, very busy. Outback Steakhouse… nearly full parking lot.

I’ve come to the point where I can’t expect other people to care enough about humanity (at least not in the United States… ) to take pretty much any precautions as they relate to people who are not themselves.

I won’t give up on trying to help, as much as I can, the common good. But I think (no, I know) I’m going to have to step up my game on taking care of myself.

I bought antibacterial bowls and glasses and straws from silipint. I really like the pint, the 22oz and the bowls. I don’t like the 12 oz cup as much because the lid that goes with it doesn’t fit nearly as well on it as the bigger lids fit the bigger glasses. I can carry them with me and I can put them through the dishwasher (or oven). They are heavier than any other silicon food/drink containers. Whether it is a good thing or bad thing, it is heavier and harder to push/slide across a table.

I bought sets of silverware. I can toss them in my purse/backpack and carry them with us. I can know that it is clean and not been touched by anyone else.

It sounds a lot like I’m a germaphobe. I’m really not. I have no problem with picking a penny up off the ground (ACTUALLY happened today). I can pick up fruit or cans or bottles and not completely melt down. I don’t touch my face until I’ve washed… but I don’t lose it.

I’m starting to actually feel a little more ‘in control’ of whatever right now. Between that, and 99 Walks, I’m starting to be able to center myself and find the joy.

Love and Light
AprilJoy
7/9/2020