Jen Mc 🏳️‍🌈🇦🇺

I’ve had more interaction in about an hour on my toot about my recent experience regarding no masks in health care settings, and #longCovid, than I have from my friends in a week on two FB posts on my wall about long Covid.

I’ve been absent from mastodon for a while and I’d forgotten how good it feels to be validated (outside of a dedicated long Covid group on FB) and not dismissed for daring to say the C word.

As I type this my support worker is out picking up medical supplies for me as I’m crashing hard after going out for the first time in six months on xmas day somewhere that wasn’t a medical appointment or rental open house (we have to move).

I’m just as sick as I was when I actually had Covid. Congested, coughing, really sore throat, aching all over, weak, no appetite (I’ve tested negative three days straight). All because I spent a few incredibly chilled hours with 3 other people, none of whom were visibly or audibly sick at the time. This is my life now and my nearest and dearest can’t even be bothered to pretend they read a post or an article and hit the like button to show support. So thank you for reminding me that there are people out there who do still care about it and are taking it seriously.

Dec 29, 2023 at 2:55amWeb
Show threadAlex von KitchenDec 29, 2023
@JenMc long covid is fucking horrible
Show threadJosh the BlockadedDec 29, 2023
@JenMc @hannu_ikonen Please be well. Thanks for sharing. Welcome back. :)
Show threadKatriina (at Bluesky 🦋)Dec 29, 2023
@JenMc
There is terribly little talk about long covid still and seems that modt ppl don't think about it, they just now say "covid19 is milder"
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@76katriina the “it’s just a mild cold” crew are the the ones who concern me the most. Partly because they take no precautions and don’t care who they spread it to, and partly because they really have no idea how their lives could be completely devastated by that “mild cold”.
Show threadquackademicDec 29, 2023
@JenMc So sorry this is happening to you ❤️‍🩹
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@26pglt thank you. I did everything to avoid it but when it’s determined to get you it will.
Show threadJanet Logan (she/her) 🏳️‍⚧️Dec 29, 2023

@JenMc

I'm currently dealing with new cardiac issues. I strongly suspect Long Covid as the cause. My heart had been quite healthy.

Then I had Covid twice in 2021. I was fully vaccinated at the time or I would have probably been on a ventilator, and possibly among the excess dead count.

All that to say: I know LC is real. My cardiologist says it's a "diagnosis of exclusion" but didn't outright dismiss it. We're still in the exclusion process.

Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@janetlogan it is immensely frustrating going through the elimination process. If your new cardiac issues are by chance POTS or some other form of dysautonomia or orthostatic intolerance then it’s highly likely it’s long Covid, as they go hand in hand. I’ve recently added a POTS diagnosis to my long list, and I too had zero heart issues before Covid. It’s just the gift that keeps on giving.
Show threadJanet Logan (she/her) 🏳️‍⚧️Dec 29, 2023

@JenMc

POTS, AFib, atrial flutter, so basically dysautonomia / arrhythmia of various sorts. Also a distended (enlarged) aortic artery. All of which are amongst the laundry list of cardiac issues theorized to be caused by Covid.

I became sufficiently symptomatic this past summer that I sought treatment. Well, TBF, I got Medicare in July. Before that I couldn't seek treatment because of crap insurance from the ACA. Some of those companies? 😡

Show threadJanet Logan (she/her) 🏳️‍⚧️Dec 29, 2023

@JenMc

Also: https://mas.to/@janetlogan/111662113482294432

Janet Logan 🏳️‍⚧️ (@[email protected])

I have a CT with contrast of my entire torso in a few hours. It's part of the cardiac mess I've been dealing with since late July. And I can't get to sleep. I'm sure anxiety is a big part of that. We already know that my aortic artery is enlarged. This is to get a better idea of just how severe that enlargement is. At least that's my understanding. #spoonie #afib #CardiacHealth #AorticArtery @[email protected]

mas.to
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@janetlogan much as going through the public system here is infuriating at times o can’t imagine trying to navigate the American health system while this unwell. My heart goes out to you that you’ve had to deal with that as well. Hopefully you’ll get some decent answers and appropriate treatment that’s affordable soon.
Show threadJanet Logan (she/her) 🏳️‍⚧️Dec 29, 2023

@JenMc

Yeah. The "greatest nation in the world" is more than happy to let me die or go broke trying to stay alive.

I opted for a private provider of Medicare services. It's been pretty good so far. My various meds, with one glaring exception, are zero cost to me. One test wasn't covered, but it wasn't terribly expensive.

Medicare covers my premium. I know lots of people are hurting much worse financially.

Thanks for the good thoughts.

Show threadPixiePancakeDec 29, 2023
@JenMc I’m so sorry that you’re sick. Get well soon.
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@MissPixiePancake thank you. I’m trying!
Show threadUairDec 29, 2023

@JenMc

I hear your pain.

I just found mastodon and adore it.

Good luck with long covid.

Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@poloniousmonk out really is the most wonderful, supportive community. I’m glad you’ve found it.
Show threadHumble Fan of Atty. WooDec 29, 2023

@JenMc

so, were you masked up when you went out among your friends? Cuz I mask up here in TX and can be only one of maybe 6 or so in an entire grocery store who is masked up. Have not had Covid, but recently was devastated by a sinus infection, which I hadn't had in many yrs. It ravaged my throat and it took 10 days worth of Amoxicillin twice a day to knock it out, and since then I have a rather nagging little cough. Maybe had I had an add'l 2 or 3 days worth more of the antibiotic, I wouldn't have this cough. Anyway, I feel for ya. Stay strong and careful.

Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023

@BillMcGuire it was just the four of us in my friends’ home so I didn’t mask up while I was there. I do mask everywhere else I go though. It was my first time out of the house without a mask since we started wearing masks. Perhaps not the wisest decision but they were taking me in for Christmas Day and I didn’t want to offend.

Sinus infections can be the absolute pits. I’m so sorry you had to deal with that.

Show threadHumble Fan of Atty. WooDec 29, 2023

@JenMc

the problem with not masking, and I mean whoever is NOT masked up, is that you can't tell who has Covid and who doesn't. So, i'm limiting my exposure. I hate masking cuz I wear glasses and they fog up too easily, but ya do what you have to do to keep going. We've kept up with our vaccines and have found out after the fact that some people we visited, one lady who was 93, was found to have Covid the evening we were there. Heck, I kissed her on the side of her head. Here in TX, it is considered to be sort of wussified to wear a mask, but at 72 yrs old each, we do wear them. Good luck going forward.

Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@BillMcGuire I’ve done three RATs on consecutive days so I’m reasonably confident it’s just PEM with a little lurgy of some sort thrown in for good measure.
Show threadHumble Fan of Atty. WooDec 29, 2023

@JenMc

I saw that; I'll help you hope.

Show threadDragon-sided DDec 29, 2023

@JenMc
> FB posts

Relevant: Bob Newhart in his prime middle age was an absolute comedic genius. Give him these six minutes and twelve seconds. Highly therapeutic!

https://yewtu.be/watch?v=jvujypVVBAY

Show threadJohan DiederikDec 29, 2023
@JenMc I feel very sorry for you and wish you all the best and good health. Good of you to warn people about Covid and LC! Too many lack the knowledge and understanding on the virus and its consequences after infection. 🍀🍀🍀
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@JohanDiederik it scares me how ignorant of long Covid people are, and how invincible they think they are and that it’ll never happen to them.
Show threadJohan DiederikDec 29, 2023
@JenMc Yes it does to me too. Even some of our children think it’s “ just like a flu”.
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@JohanDiederik there are some incredibly unwell children with long Covid too. Childhood interrupted for way too long.
Show threadVereeshDec 29, 2023

@JenMc
Best wishes from a much older cousin. I've had me/cfs for going on twenty years, and have endured many bouts of PEM. Our community saw your cohort coming right at the very beginning, and watched with horror as it all played out exactly as we knew it would, medical neglect, social disregard, and all. So sorry.

We're all so different, so what works for me might not help you, but my goto PEM remedy is a homemade tincture of calendula petals. I'll say more if you wish.

Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@temporal_spider I’m so sorry to hear you’ve been dealing with this for so long. Always happy to hear any suggestions.
Show threadVereeshDec 29, 2023

@JenMc
I stumbled on this by accident and quickly realized it helps me. I put organic calendula petals (available from Amazon, or herbal supplier) in a strong liquor. I use barrel strength rum, but most use vodka or everclear.) You can steep for several weeks, or carefully warm it in a sous vide or water bath (don't let it catch on fire, lol.) if you want it faster.

I put about three droppers in a little water to drink two or more times a day, when I remember. If you're unable to tolerate...

Show threadVereeshDec 29, 2023
@JenMc
... alcohol, try just tea. I don't know how to make a glycerine tincture, but it's probably not too difficult.
Show threadFREE🇵🇸PALESTINE, Says @SineDec 29, 2023
@JenMc I can see long covid as the true health Apocalypse! Covid19 was just the opening act, long covid will bring countries to their knees, and then some. No country is taking it seriously, its ignored & not even considered!
To you & others suffering w it, I wish you well & a good, lasting recovery ❤️🙏 👍 🙂
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@Sine_Nomine they won’t take it seriously until it’s too late. That I’m sure of. In the interim we’re just an inconvenient reminder that Covid hasn’t gone anywhere, no matter how hard they try to make the stats impossible to find, and they’d rather hide us away to protect their precious economies. NSW Health, a couple of months ago, deleted a comment thread on one of their FB posts that mentioned long Covid. I went back to look and it was the only comment thread they’d deleted. So I commented again about how it was a bit suss that the only comments they’d deleted that day were the ones that referred to long Covid. No response, of course, and I’m sure they later deleted that comment too.
Show threadFREE🇵🇸PALESTINE, Says @SineDec 29, 2023
@JenMc we need a trending #LongCovid to stay up on all socials, in the news, asked every time a politician takes questions, at every opportunity, raise, raise, raise. Then share responses on socials again! Then only time politicians do anything is when they think they won't get reelected! We recently had a town Hall meeting & I questioned our local MP on his response to #GazaCeasefireNow #LongCovid many in audience supported this & asked further questions in this vein. Luckily he supports both
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023

@Sine_Nomine

I agree wholeheartedly. Sadly, it’s often falling to those with the least #spoons to spare to be doing all the work. It’s starting to get more exposure in the media here, not a huge amount but enough that I’ve noticed the increase in articles being shared in the Australian Long Covid Community group on FB. The ABC, especially, has been doing some really good reporting lately. Mind you, it’s considered way too left for the right wingers who are the biggest deniers and really need to hear it, and some leftys are now complaining it’s swinging a little too far to the right but at least they’re less likely to be deniers.

Show threadDDRDec 29, 2023
My god, you got it bad @JenMc. 😭
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 29, 2023
@ddr not as bad as some, but bad enough to have days where I wish I weren’t here any more.
Show threadPaul ChernoffDec 29, 2023
@JenMc @StorieswithaWill The only medical office I use that requires masking is my cat's vet.
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 30, 2023
@paulc @StorieswithaWill it’s insane really.
Show threadSoitwentDec 29, 2023
@JenMc sorry you’re going through this, you’re definitely not alone.
Show threadJen Mc 🏳️‍🌈🇦🇺Dec 30, 2023
@Soitwent thank you