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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

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

Choosing Joy… 99 Walks… Joyful Wanderer… July 4th edition

It’s the 4th of July 2020. I am so over politics. I am so over Covid 19 and its evolving cousins. I’m over the Murder Hornets and the Meth Gators and being scared all the time.

January is the traditional time of “reset”. And in January I decided that my word for 2020 was going to be JOY. And then February happened… then March happened… then April and May and June. I have been fighting so hard to just maintain any vague semblance of sanity and not falling into a pit of depression.

Don’t get me wrong. I’m on year three of my anti-depressants. And there are days when I really want to message my Dr to see if we can’t adjust the dose. It’s not like I have much to be depressed about. Bear on hospice, knowing that the flu probably put him there. Races being cancelled. Fairs and Disney. Movies at the theater being a thing of the past. The world as we know it changing to one where hate and derisiveness are rampant. Realizing just how polarized things really can get. It’s made this Mary Sunshine pretty much a Debbie Downer for a lot of days.

Then I found 99 Walks.

I’m not even sure how I found it on Facebook, to be perfectly honest. It might have been an ad on my feed. I don’t know. I know whatever it was, I saw the shiny thin bracelet that is your reward for making your walking goal every month and I was hooked on the bling. Ask anyone… I have a crap ton of medals hanging in the window of my office at home. Bling is an awesome motivator. And I needed some heavy duty motivation. Three good things every day for months on end wasn’t doing it. Something had to.

So I went and investigated. There is an app for that (go figure). There is a book. There is a central Facebook group. There are spawned off other Facebook groups. Everyone is so incredibly supportive and friendly. It is my respite from the world. It’s not a magic bullet. I still find myself in a pit with nothing to look at but mud walls and worms kind of frequently. But it is helping.

This month the theme is Joyful Wanderer (did I say that yesterday?). I’m taking this month very much to heart. I’m very mindfully walking. I’m stepping up my game. I’m very determined to get my Joyful Wanderer bracelet.

I’m struggling to get back to Choose Joy.

I’m manufacturing ways to try to trick my brain back into some semblance of who I am because I really really miss being me.

Does that make any sense?

So tonight I’m sitting here waiting on French Fries to be finished cooking, nursing a shoulder that has been flairing for about four days now (it usually doesn’t last this long and I’m really not enjoying it). I’m putting my left hand where I need it to be with my right hand so I don’t move the muscles so much in my left shoulder. I’ve been putting Boo Boo Salve on it pretty regularly (it’s awesome stuff… all natural… a friend of my mom’s makes it… https://www.rainbowskytrading.com/) and adding in the Napproxen at night.

Today we went to the zoo again. It’s coming up close to the Asian Lantern Festival and we wanted to see them in the daylight. That, and the Dinosaur experience is open so… yeah.

It was particularly scary to be out and about today. The state isn’t as bad as Florida or Arizona or California right now… but we are double what we were a month ago and it isn’t looking better any time soon. Our county is the second highest number of Covid cases in the state. The mayor of Cleveland made an executive order that everyone has to wear a mask when they are in a public place.

It was good to see, though, that people were actually wearing masks this week at the zoo.

I worked hard today at mindfully spending time with Bear and Squirrel. It was, altogether, a good day. Pictures to treasure. Memories made.

Should we have gone given everything? Probably not. But we were as careful as we could be. Handsitizer. Clorox wipes. Masks and 6 feet apart (even when it pissed people off that I deliberately would not push Bear’s wheelchair past them when it was too close. Bear says he will die sooner if he can never leave the house. I can’t take everything away.

Starting now I will be starting to use curbside pick up.

Am I scared?

Hell yes

But I can do this. I can’t say this is any kind of new normal… but it my current reality and I have to find myself again.

Today was one walk of 2.6 miles pushing the wheelchair and one walk of 1.2 miles. both were mindful and peaceful.

Love and Light

AprilJoy

7/4/2020

Joyful Wanderer… 99 Walks July

It’s been rough. Mentally, it has been really rough the last few months. And now Ohio is at 1301 new Covid cases in a day. That is the third single biggest day yet. Our last three days have been 743, 1076 and 1301. I’m worried that today will bring us up over 1500 and that will be the biggest day ever. They have implemented a county by county color coding system for the state.

Trumbull Ranks Red in New COVID-19 Rating - Business Journal Daily

7 counties are red. We are one of them.
1 county is very close to being purple. I fear for Columbus area. I fear for Cleveland area nearly as much.

And that, my friends, is the lead in to my today.

Right now, I am sharing my space with my bulldog. My buddy. He’s guarding me… keeping me company… being my boy.

Yesterday I kind of melted down. Between the notice that the day before yesterday came out with the news that there were 3 confirmed cases of Covid in the building where I should be working but thank the stars that I’m not and one presumed positive (a tenant of our building, not someone from our company) and the notification that we are one of the biggest hot spots in our state… it was not a great day.

But it was a day that I needed to step up and shake myself off and knock some proverbial sense into myself. I can let this shit beat me down. I can let it define me. I can let it take away everything that I have always been. Or I can ‘man up’ (so to speak… but I guess that isn’t politically correct any more either) and get my own shit together.

I’ve paid for three months of 99 walks. I’m really liking the app and the Facebook group. It is an incredibly positive bunch of people. The theme of July is Joyful Wanderer. June (I made my goal so I get the bracelet) was share your sunshine (or share the sunshine or something like that) and it was a good theme and all… and I really really like the May bracelet that was Inhale Exhale (because yeah… ) but July… July I am really taking to heart. My word for the year in Joy. And I have been struggling mightily with it. But now it’s time to focus on it.

Posted in the 99 walks some of the mental and emotional struggles I’m having. But this morning I really decided it was time to put my shoes where my mind needs to be. So Squirrel and I went for a walk. We went to our park. She wasn’t ready, mentally, to go back to the lake and I’m not really sure I am either. But our park… yeah, I can do that.

What I didn’t realize at the time was that they have been doing so incredibly much work in our park, I know that change happens and change is okay. This change was kind of depressing. They ripped out the dam that made such a pretty waterfall. Right now everything is really dug up a lot and you have to sneak across the BRIGHT ORANGE fence (where someone else had already stepped it down to the ground) to see what has been going on. It was hard to see what they had ripped out, but it is good, too, because they are making it in such a way that you will be able to go down to the edge of the creek instead of taking your life into your own hands if you decide to do that. I viewed it with mixed feelings.

We then went to the wildlife sanctuary part of the park. Squirrel sat in the truck (too humid for her to be comfortable) and I went for a walk. I walked to the pond and watched the fog blowing across the surface of the water. I went to the little pond. I went along the creek. I went and sat for a few minutes at my favorite oak tree. I rescued (not sure if that was something I could get into trouble for or not so… no no, I didn’t do anything) a few of her seedlings and brought them home. They are now planted around my yard.

After I planted the saplings, I came in the house and started a decent sized batch of sauerkraut to (hopefully) fermenting and in about 4 weeks I will be able to can it up.

I’m not completely back yet. But I’ve made the conscious decision that I need to be back and I need to get my proverbial shit together and stop letting what other people do and what other people don’t do impact my day.

I need to center myself and get back to working on my word for the year. It’s the middle of the year and I’ve lost at least a quarter year being lost and afraid. Covid isn’t going anywhere and I need to find a way to live with whatever this reality is.

Stay safe

Love and Light
AprilJoy
7/3/2020