Tag Archives: rant

I am just freaking tired

It is infusion day, so I am tired in general. But the tired that I am is way different than that kind of tired.

I’m tired of having to be the bigger person when I walk into Walmart wearing my mask (because even though I am FULLY vaccinated (as in I got my third dose already so yeah) and I get derogatory comments directed at me. I either get comments about it all being a hoax… or not nearly as bad as the flu… or get your damn shot… or that I am just plain stupid for wearing one… or if I’m fully vaccinated I don’t have to worry about anything so don’t pander to the man… whatever

I’m tired of seeing posts about “them” putting chips in vaccines so they can track you and knowing that at least half of those posts are made by people using their shiny smart phone that has legally been tracking people since the 9-11 attacks. OOOOO yeah… tell people how YOU aren’t going to be tracked and stick that tracker that automagically sends you “there is a sale at that tire store you just passed” adds… and coupons based on your past shopping…. that can hear you and pander adds to you… because yeah… the vaccine is what they will use to know things.

I’m tired of the rhetoric and the arguments

I’m tired of people being judgemental butts

I’m tired of “yeah yeah yeah, I know you have problems but what about MY more important problems”

I’m tired.

No, the vaccine isn’t the magic bullet. Yes if you get the vaccine you can still get covid but not as bad (I’ll get to that in a couple minutes). Yes, you have every right to your views and opinions but you know what, I have every right to mine and if I don’t happen to point out that you are stupid or being a sheep to a different flock (if I’m going what a whole bunch of people are doing I’m a sheep…. GUESS WHAT… if you are doing what a whole bunch of different people are doing you are just a sheep to a different flock but you are still a sheep… you can find a way to be your own lone wolf to eat the sheep I guess but if you are like a metric crap ton of other people you’re not the wolf).

Yes you can pick and choose your pieces and parts of your version of your religion to justify whatever you can do. Even Shakespeare knew that much a bazillion years ago…

“The devil can cite Scripture for his purpose.
An evil soul producing holy witness
Is like a villain with a smiling cheek,
A goodly apple rotten at the heart.
O, what a goodly outside falsehood hath!”
― William Shakespeare, The Merchant of Venice

But you know what… I just spent the weekend worried (surrounded by pieces and parts of my family at any given point in time) about my little sister.

My little sister was fully vaccinated (MONTHS ago because she has parents that she didn’t want to put at any more risk than had to be… and she has a daughter that has diabetes so is at added risk and didn’t want to be the cause of bad things happening even inadvertently).

My sister caught covid a few weeks ago. She was self swab tested and it came back negative but there can be false negatives. They treated her for covid and she was REALLY sick for several days and improved. End of last week her doctor cleared her to start back to work on a limited schedule.

Friday she was out an about doing the things that she generally does… towards afternoon she realized she wasn’t feeling right (her dr told her to be aware if not feeling right happened and get to the ER). She is a trained nurse so she knows what to watch for. She went to the local ER. They knew something was up but didn’t know what. They were going to admit her for observation. Then they realized something serious might be up and they decided they didn’t want to look bad if things went south so instead of putting her in THEIR ICU… they life flighted her to a semi local hospital. By the time they landed she was in the middle of a massive heart attack (two of the four blood vessels were blocked by clots). She died three times and had to be revived with the defibrillator… THREE TIMES. This, she/we were told was classic post COVID complication. No plaque in veins just huge clot that has now exploded and is hundreds of little clots… on blood thinners… having ecgs… moved (moving?) to a “regular” room on the heart unit. Will need a pace maker when she gets strong enough but in the mean time will be wearing a life vest for at least six months (those are the personal aed devices that monitor your heart rhythm and will shock you back to normal… alive… if you pass out).

They are keeping her a few more days to monitor her.

Her doctor told her that it was a blessing that she had been fully vaccinated because if she hadn’t been… she would not be alive right now. Her covid WITH the vaccine was sever enough that if she hadn’t been vaccinated she would have ended up intubated and would most likely not have made it.

I’ve heard my mom cry hysterically over the phone… not able to catch her breath… when she called and told me that sis was on her way to the hospital in life flight. I sat around the table talking to very sober family who rallied around each other waiting to get information from little sister via phone/messenger/facetime. I’ve heard the fear and the pain.

And this morning it’s back to being Monday. I’ve driven 500 miles in two days (two trips there and two trips back… because work…. and dogs). I’m sitting here listening to the morning snorage that is all around my feet because they are dogs and they sleep A LOT but they also know and want me to be okay.

And I’m realizing how tired I am. I watched as some people pretended to support the family while wedging in their own agenda to the conversation. I’ve watched while people looked at me with hard side eye for wearing my mask in Sheetz to grab pop and coffee. I’m tired of arguments and rhetoric and bullshit and my tolerance for bullshit is so epically low that I currently refuse to deal with it. I’m unfollowing people (because lord knows I can’t block people).

Tomorrow should have been my anniversary.

In 19 days it will be the anniversary of bear dying.

Covid has been a thing and my doctor told me that covid will forever be a thing and the best thing I can do is avoid people at all costs and learn all of the right ways to protect myself and my family. Even with fully vaccinated for flu or covid or pneumonia I will only ever be 65% protected because of my amazingly expensive drugs that allow me to maintain a fairly normal life.

If you see me with my mask on, don’t get all sanctimonious on me. I don’t care what your opinion is. You have yours and I have mine and if you don’t want me to get bitchy in your face just leave me the hell alone. If you don’t like it, I DON’T CARE. And the next person who tells me that they were bullied into wearing masks for a year so now it’s my turn to be bullied because I am still wearing one… don’t be surprised if I tell you to go sleep with the sheep in your own damn herd.

I’m tired.

I’m tired and there is no end of bullshit in sight.

Love and Light
ajw

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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….

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Coloring Mandalas: A Rant

***** Warning… I’m on a rant **** I read a blog post this morning about adult coloring pages/books with mandalas being a tool of Satan.  Normally, I read things like this will a jaded eye and go on my merry … Continue reading

People are Just People

People are People So, I’ve pretty much had it with people dumping on people because there is something, just a little something, that they don’t like. Hair color, nationality, sexual orientation, gender, whatever… People rag on other people for lots of reasons. None of them are really good reasons.
I don’t know if I’m getting old, or I’m just flat out weird, or maybe a combination of a lot of things, but (as I’ve been watching out the window of the bus navigating the highways and byways of Ecuador) I realize that that People are People.
The people you pass on the street? They may not be JUST like you, but they really are just like you. They have their own problems. They have their own opportunities. They hurt, they get angry, they get happy, they love.
Life is so full of ire and anger and stress, why is it that people find it necessary to spend so much energy and effort on judging and hurting other people.
Cliche? yeah… I know.. but… seriously… why can’t we all just get along?
I watch the people… they are going to work, carrying their children, waitng in line at the bank, packed like sardines (more cliche? full of it today, aren’t I?) in city busses.
What is it about people that compels them to judge, to hate, to malign? Energy would be much better spent focussng on making yourself less stressed and more content rather than expending it on hate against others…

okay… soap box over.. you can go back to your regularly scheulded programming.

Methotrexate… a rant…

Okay, so I gave you fair warning.  This is a rant.  I try not to let it eat at me and fester, but there are just some things that are so irritating that I have to let lose.  THIS is one of them.

Methotrexate has always been kind of a sore spot with me (not to… you know… make bad jokes about stomach shots and stuff).  For a while I had a hard time finding a store that had sufficient available Methotrexate (liquid) to fill my prescription.  It isn’t a profitable drug.  Passe.  So the makers don’t always manufacture sufficient.  Or there is a mass recall (this has happened more than makes me comfortable).  Add to that, my DOCTORS have suggested that I would be better off using the “with preservative” kind and have written my scripts as such.

Most pharmacies don’t have a problem filling what is written.  Most… If they have it.  I’ve had trouble with one chain in more than one city… in more than one state… in more than one TIME zone… when it comes to this drug.

In Texas it was ‘suggested” (okay… they told me flat out) that they don’t carry my medication as it is written.  I need to go BACK to my doctor and MAKE her write my script either as pills (which make me really REALLY sick) or as the injectables that they DO carry because the company they happen to chose to use doesn’t carry the with preservative vials.  So… I said that they wouldn’t be my pharmacy, I trust my doctor and it is HER job to write what she wants me to take… not theirs to prescribe what they want to sell me.

Now I find myself insured with a company and the pharmacy that I HAVE to use for maintenance drugs (which, despite the fact that I take MTX every week and have for three or four years now, apparently this isn’t… ) is… yep yep yep… the one that doesn’t like my MTX script.

Skip forward to yesterday.

Dr called in my refill.  One month supply, 4 shiny little vials (except the doctor thinks she’s calling in two moth supply… blood test to blood test) came from the pharmacy.  Bear and I got into a lengthy text message conversation about the meds.  He said the bottles didn’t look like what I’ve been taking.  They didn’t.  They say preservative free on the vials, so I got a one month supply, half of which I would be throwing out, and the vials are bigger and a different shape than what I use.  OH… and they are twice the dose I use.  The ones I take are 25mg/ml the ones they filled are 50mg/ml.

Now, I’m not a pharmacist or anything, but I’m good enough at math (it was one of the dual minors on my undergrad degree) to know that 50 is kind of a bigger number than 25.

I called the pharmacy.  They don’t carry my script and TECHNICALLY the doctor didn’t say it HAD to be with preservative.  They GUESS (they guess???) they can TRY to get what I take to fill my script NEXT month, MAYBE, but only if the doctor SPECIFICALLY says they HAVE to.  Otherwise they will give me what they like to sell not what I take.

What do I do with the drugs I won’t take?

Toss them they guess, they can’t do anything with them.  WE left the store.

The guy on the phone laughed at me.  He thought it was hilarious that I was calling him about this.

I called the insurance company.  The part of the company that handles the prescriptions.  The part of the INSURANCE company DIRECTLY AFFILIATED with the pharmacy (which is why I HAVE to use them for maintenance drugs) because I was concerned with being laughed at and being told that there is NOTHING they can do until they get a different prescription.

And I had questions about why (maybe the doctor changed what dose she wants me to take even though I’ve been mostly controlled and even though when I was there she verified my dosage) it was 50mg rather than 25mg.

The insurance company showed that 25mg had been billed in Feb and (GHASP) yeseterday.  25… 25… yeah… the right dose.

I was also informed that MTX is apparently not considered a maintenance drug, so I can get THAT filled anywhere I like.  So I’m going back to where I can get what I take without argument or stress.

I don’t understand why they think it is okay to mess up my meds.  And I know it isn’t personal.  They mess up meds for lots of people or it wouldn’t be such a joke.

My MTX… taking twice the strength might make me feel crappier than usual for a day, but it probably wouldn’t do any real lasting damage.  But other people take other meds.  They RELY on pharmacies filling the scripts RIGHT.  They might not realize the dose is doubled.  What then?  Not everyone has a George Bailey looking out for them.  Not everyone triple checks the labels every time (okay, MOST times).  What happens with them.

he he he… ooopsy?

shake my head… you are dealing with LIVES… it’s really not that funny.

On Bedside Manner

I’ve been struggling with the bedside manner of doctors and their assistants for the last few days.  I’m not sure if that class isn’t required in medical school (you know the class, your patients are humans, they have feelings and you might want to remove your foot from your mouth BEFORE you speak and make everything worse) but I know there are a whole bunch of people who obviously flunked it.

I have a shiny new ENT.  I needed the ENT because without his approval that I don’t have Staph any longer and that it wasn’t MRSA and I’m good before I could get the Orencia infusion I was scheduled for last Tuesday.  I went.  I listened.  I answered all the questions honestly (I think that was my first mistake).  Dr looked me over and promptly told me that my face is deformed and that makes it defective.

Really?

They taught you that in medical school.  Tell your patients that they are deformed?  My new theme song is Hunchback’s Outcast.  Actually… it pretty much was before that… I’ve come to embrace my freakdom and realize that sometimes being an outcast is a really good thing.  It means I UNDERSTAND… but I digress (go figure).

So… one doctor told me I was deformed and defective.  Fail

Called my Rheumy office THREE TIMES to make sure they got the ENT’s report so I could get in to get my infusion just one week late (Like the Rheumy promised when I left without it LAST week).  The PA finally actually CHECKED the fax machine… Friday… oh wow, it’s here.  Sorry… grrrrr… well, you won’t be worked in this coming Tuesday, we are already double booked, and next week doesn’t look too promising either and we already cancelled your next two appointments because you didn’t get your last infusion on time. Sorry.  I will talk to the doctor and find out when we will be able to get around to working you back into the rotation.

It would maybe have come off better if she had SOUNDED like she gave two shits about me getting back in or the fact that the antibiotics the ENT gave me kicked me into the mother of all flairs.

The “gee, sucks to be you” tone sent me into a good thirty minutes of crying in the car (sitting in the parking lot of the boob squisher’s where I made the call to the Rheumy.  I know they have to double book the lady who does infusions.  I knew I was taking my chances of getting in anyway.  But the “I really don’t give a shit” tone just sent me over the edge.  It wasn’t MY fault I didn’t get my infusion. I was there, I was healed from the Staph, I was more than willing to get my infusion.  YOU people sent me away.  I did what I was told.  I’m DOING what I was told. Curb the bitchy attitude and learn that you are the PA not the principle at a Catholic School reprimanding me for being a bad person.

Okay, I understand that I frequently take things badly and that I react to the way things are said.  BUT I know that I’m not the only one.  AND I know that you CAN learn how your words sound.  I know that these people have a LOT of education.  I just wish that people skills were a little higher on the list of must have classes even if your dossier does say that you can part the red sea and turn water into whine (yeah… whine, not wine… bite me… it’s my homonym!).

Reflections on Jury Duty

So… yesterday I reported to jury duty.  Actually… TECHNICALLY, it wasn’t to jury duty, it was to see if I was to be called to possibly sit a jury panel.  Turned out I wasn’t one of the people who got to be called to sit a jury, but it was definitely a day of education, regardless.

They call probably 600 people to report every Monday to possibly be on a jury. The first couple dozen leave because they have kids 12 or under who would not have adequate supervision if they had to sit a jury.  The next couple hand fulls leave because they have other qualifying situations (over 70, something else) that allows them to exempt being a juror. The next small herd left because they were disqualified by their status (they were convicted of a misdemeanor theft).  The last chunk to leave had a qualifying (given they were listening to their conscience) hardship that meant they didn’t have to stay, too.

People all around me murmured and muttered about how they could suddenly find a way to  get out of potentially sitting a jury.
Oh man and mine is even lower than yours.  Damn.

I got a low number on my summons.  My boyfriend said that low numbers always get picked.

I can’t afford to be on a jury.

I don’t want to take all of this time out of my normal life.

The three panels were picked.  26 for each of the two county trials, 56 for the district trial.  Most of the people were crestfallen as their names were called to go to a trial.  People, as they lined up to leave mostly seemed to be doing the “woohoo I got out of it” dance.

Then when I got home and started to look through the way other people apparently feel about jury duty, I was even more enlightened… People will do almost anything to get out of jury duty.

I wasn’t jumping up and down having a party when I got my summons.  Especially when it just so happened that I might end up having to serve on a jury on the day of my doctor appointment that I scheduled 8 weeks ago.  But after the initial “oh man” I just figured I should probably go into it thinking that it wasn’t meant to be an inconvenience in MY life (even though it appears that many people seem to think that it is personal and the world seems to be just out to get them).

If I were accused of something that I knew I didn’t do, I would want a jury to hear my case.  I would want at least a few of those people to take it seriously not just be there bitching and whining the whole time because they couldn’t get out of it.

On your way into the Jury inpanelment room (where the huge herd of potential jurors hang out to find out if they are going to be on a panel) you pass the statue of a soldier who died guaranteeing our freedom.  You walk RIGHT past his statue.  We take so much for granted.  All we (in this case) are being asked to do is sit our butts in a chair in a room for anywhere from 3 hours to a week depending on whether or not we sit a jury.  A week.  Sitting on our butts.

Yes, there are people for whom this will cause issues and I totally get that.  But for most of the people in question it is an inconvenience.  that’s all.

Would it have been an inconvenience?  Yeah.  I would have had to reschedule some doctor appointments.  I would have had to make sure people knew not to panic if they couldn’t get hold of me for a few days.  I would have had to worry about making sure how I would need to schedule my meds and I would have had to make sure I had some naproxin in case things got really ouchy.

But geeze.

What is really the bid deal in doing this?