The only doctor that treats #POTS in western Canada has declined my referral, which was at the request of a cardiologist I waited to see for 5 months.
I can’t even with this country. I hate this medical system. I hate it. All of it. I’m so tired of having to be my own doctor/case manager. For f*cks sake.
I have a diagnosis, and I’m on a medication for treatment but was told to be followed by a specialist after I moved here 9 months ago.
The cardiologist told me POTS and #MECFS are too complex for him, so he refused to be part of my care team at all and told me to find an electrophysiology cardiologist - there is exactly one doctor in AB that could have helped and he also said no.
It’s been 8 months since my referral to the long covid clinic in AB and I’ve yet to hear anything about an appointment.
My last day at work has been scheduled. In just 3 shifts, my 25 year career in #proAudio comes to a screeching halt while I enter the terrifying world of #disabilityInsurance.
All this because I caught #covid19, once, at work, in June 2022, despite having 4 vaccines.
The first 12 weeks were bad. Then I got a little worse each week. My weight tanked. I am 6' 3 and was a little over 200lbs (my normal weight). A year and a half later, I presently weigh 145 and dropping.
I was diagnosed with #meCFS, #PEM, #POTS, and am still having tests (CT, gastroscopy, biopsy) done on my GI.
#LongCovid is very real, and has robbed me of the luxury of clear though, easy movement, and a "normal" life.
Don't get Covid. Don't get Covid again. #WearAMask, please.
Quick comment on that last boost (#GoOutsideForMe, where you can share simple videos (even no talking necessary) with people here who can't often go out due to disability or other factors) - if you are an outdoor person at all & this strikes you as interesting and something you can do - please read the comments for more ideas & information on how to do it & and how to boost.
I'm not going to lie: it's been challenging dealing with major fatigue, brain fog, pain, breathlessness, random flare-ups, and an ever growing assortment of medical and mobility aids.
I'm not saying this as a pity party, but rather to remind you that every time you get #Covid, it's another chance to join my Long COVID Cool Kidz Club, and you really don't want to be a member. The dues are too high, theres no easy way to cancel your subscription, and the service is terrible!
Thank you Mastodon and the Fediverse for the laughs, conversations, connectedness and the cat photos..... Sooo many cat photos. You really put the social in social media, you adorable weirdos. ❤️
Scraped up the energy to get a 34 minute walk in. At first I was only going to walk the driveway, then I convinced myself to go to the stop sign. At the stop sign there was a neighbor who left their house to walk also. She is lovely but chatty & nope. I want to get my freaking 7000 steps, not the news of the neighborhood. I kept walking, faster, thinking I'd go around the block. Then I remembered Husband telling me about this:
Anyways, I walked 34 minutes when I barely wanted to leave my house. 🤣 Yay, for having energy!!!
I'm home. I'm medicated. I'm going to empty the dishwasher then do my pilates.
Not 5 months ago I would have had to pick one of the things- walk, dishwasher or pilates & it would have worn my ass out. I wouldn't have been able to do the pilates. I could have done the walk but I would need 2 days to recover from it. #POTS
“We here develop the argument, with accompanying evidence, that fibrinaloid microclots, through their ability to block the flow of blood through microcapillaries and thus cause tissue hypoxia, are not simply correlated with but in fact, by preceding it, may be a chief intermediary cause of POTS, in which tachycardia is simply the body’s exaggerated ‘physiological’ response to hypoxia.”
While there's a lot of talk about fatigue going around, here's your regular reminder that you might as well do an active stand test to check for #POTS: it's absolutely possibly to have POTS and not be aware of your racing heartrate, not ever faint, and to have fatigue as your most obvious symptom.
Today the first article I wrote in bed was published. It responds to the recent recommendation of GET for PEM by prof Fedorowski et al. In our piece of correspondence, we explain why GET should not be recommended for pw PEM.
Back on my #rowing bullshit. It's been a while- now that I can get cardio walking outside (& I'm enjoying it) it's hard to do both. This morning I rowed 500 strokes in 28 mins. My right hip still clicks on the release. Annoying, not painful.
I need to eat, shower & get to the food bank. I still have energy & I wanna workout more but I know I'll need it for whatever my day throws at me. I can always do more when I come home.
Yesterday had a little energy so took care of some needed cleaning. Had a hard time stopping even when I felt my energy waning. If you, too, have #MECFS, you can probably guess where this is going.
Ate a few bites of dinner, suddenly had a wave of nausea and burst into tears. Made it to bed and instantly had a nonepileptic seizure.
This morning, took a shower, collapsed on the bed while getting dressed and had another nonepileptic seizure.
It depends on person, but for some folks with orthostatic intolerance (POTS, NMH) using an ORS (oral rehydration solution) is a more helpful than sugar free drinks.
But not Gatorade! I'm talking about Pedialyte or other ORS recipes. They have sugar (usually glucose, more easily absorbed) and that sugar helps the sodium get absorbed.
The attached image talks about a study comparing orthostatic tolerance in patients who used ORS vs. IV saline vs. nothing.
We are proud to announce our Scientific Advisory Board. This esteemed team of thought leaders & change makers from across the research ecosystem will help set our strategic research priorities.
"„Das Virus tötet weiter“: WHO-Chef warnt vor leichtfertigem Umgang mit Covid-19
#Die WHO hat dazu aufgerufen, sich weiterhin #impfen zu lassen, in vollen Räumen #Masken zu tragen und gut zu lüften. Im Dezember sei die Zahl der #Patienten auf der #Intensivstation um 62 Prozent gestiegen."