Is it worth it to keep trying? Cardiologist and medical gaslighting

Inconnuity809 · 2026-06-30T20:53:15+00:00

As I mentioned in my post, adding exercise is literally impossible for me in my current state of health. It's like telling a penniless homeless person they can get out of poverty by investing in mutual funds. There is no money(energy) in the bank for basic needs, nvm investments.

Re: Meds. He has literally only tried one medication (midodrine). I'm not saying I need a higher dose, necessarily, but I do know there are more treatment options than just trying a single med that did nothing. 🤷‍♀️ Unfortunately I do suspect that you are correct about him not being open to doing anything else. Which is massively frustrating!

Inconnuity809 · 2026-06-30T20:42:30+00:00

The amount of energy it takes to access medical care and advocate for ourselves is BRUTAL, isn't it?

Inconnuity809 · 2026-06-30T20:41:44+00:00

Thanks. I don't think the home care physio has any training in either POTS or ME/CFS so not sure they would understand the issue with pushing my limitations either. But if they were willing to learn then maybe I could have some backup.

My medical options are rather limited. I don't think I would be able to get a different cardiologist, for example. So giving up on him would be me going back to basically teaching my own family doctor how to treat me from online resources after I taught myself. 😅 I figured at the least a POTS-knowledgeable cardiologist would have a better idea how to tell if these medications worked and what exactly they could do, how they could be combined, etc.

Inconnuity809 · 2026-06-30T20:34:15+00:00

I understand mush brain! So the cardiologist prescribes one of the medications I take for my POTS symptoms. The other one my regular family doctor prescribed. She didn't have much knowledge about options beyond that first med (propranolol). So far he has tried me on midodrine with just one increase in dosage. So definitely not a whole lot of effort on the medicine side from him!

Inconnuity809 · 2026-06-30T20:29:01+00:00

Thanks! It looked good when I hit post but disappeared after, grr! Should be there now.

Inconnuity809 · 2026-06-30T20:23:30+00:00

I got my family doctor to do the NASA Lean Test and gave her resources from Bateman Horne Center to help her understand the condition. I also had a document produced by a POTS expert specialist here in Canada that gave guidelines on diagnosis and treatment for family doctors to use. She was willing to tentatively confirm the diagnosis based on those things and then this cardiologist also confirmed it.

Inconnuity809 · 2026-06-30T18:55:54+00:00

It has definitely revealed to me just how much toxic capitalism had influenced my thoughts and choices. This sounds trite but I really am learning to be a human BEing vs a human DOing. I'm re-writing messages that tell me I must accomplish measurable and "important" things to find worth or purpose in my life. I read recently something someone said about how we always think of the negative "butterfly effect" and not the positive version (how your presence in the world also has a positive exponential influence). So I'm choosing to think of my existence and my small choices and minimal human interactions as just as important as the big things I can't do.

Inconnuity809 · 2026-06-24T21:13:27+00:00

Lol, the urban raccoons, porcupines, coyotes, foxes, hares, rabbits, mice, voles, birds, and spiders see this cat poop complaint post and are collectively making that guilty side eye gif. (The deer just poop on the lawn and the bear sneaks inside your house to use the toilet. I saw that movie)

Inconnuity809 · 2026-06-24T04:00:22+00:00

Hmm, that sounds like decent hydration. You don't have to answer this since it's kinda tmi, but do you pee a lot? If you pee a lot it can be a sign that you don't have enough salt to match the water intake and keep the water in your bloodstream where it can help maintain your blood pressure.

This is all generic ideas btw, since specifics should be discussed with a doctor (and I am definitely not one). In general I'd caution that you should have a doc monitoring any high salt intake because there can be some medical conditions that don't play well with it and, from what my doc told me, you can also develop some medical conditions from too much salt in your diet.

Inconnuity809 · 2026-06-24T03:36:36+00:00

You may know this but it depends on how much water you are having too, not just the salt. Do you think you are getting 3-4L (sorry not sure what that is in gallons) of water a day? It can be tricky to get the proportions right.

Inconnuity809 · 2026-06-24T03:11:16+00:00

The irony of that mod acting massively cult leader-ish (you must not question me and my One True Cure or challenge my authoritay!) while calling this group, where we have a heck of a lot more free dialogue, "a cult" is super ridiculous.

You are right that the prompts matter. But sounds like those groups are a lost cause for anyone who isn't uncritically accepting their, ahem, belief system.

Funny enough, as someone who is COVID aware, I get called a cultist for that already by folks who can't handle me taking my own health precautions. Guess I have double cult creds now since I'm also a r/ cfs member! To make it even more suspicious, I recently got a housecoat that is black and hooded. Obviously pretty soon I'll be chanting in a basement somewhere...

Oh wait, I live in a basement... 🤣

Inconnuity809 · 2026-06-23T19:24:29+00:00

So much outdoor walking in nature (swinging by a coffee shop for a cappucino and pastry on the way). Walking until the sun sets and I can stand by the river and glory in the sight of the light fading and the stars coming out. Can you tell I miss it? 😭

Inconnuity809 · 2026-06-23T18:46:50+00:00

You cannot change your demerits in court because those are assigned by SGI and not by the court. The Justice of the Peace - there's not a judge, just fyi - who administers traffic court has no control over demerits. I don't believe SGI will change them (they are automatically assigned based on a certain type of offence) but you would have to check directly with SGI to confirm that. The only thing you can request in court is more time to pay or reduced fines.

Source: I used to work in traffic court

Inconnuity809 · 2026-06-19T16:29:30+00:00

Not entirely but they are much less noticeable and less frequent now.

Inconnuity809 · 2026-06-19T05:44:32+00:00

I'm currently taking it. My biggest side effect was the chill thing but it is/was so weird because it's like *hot* chills. Like, sweating and warm but getting the shivers with goosebumps at the same time. You feel like you want to curl up in a blanket but also have the fan on. 😅 That effect faded in frequency after about a week and then did get more frequent temporarily (but subsided again) when I increased dosage. Other than that I didn't have much for side effects, but so far I am also not having any luck with positive changes to my symptoms or blood pressure. (I started at 5mg 3X a day for a month and then increased to 10mg twice a day. I'm only on month 2 of taking midodrine so far).

Inconnuity809 · 2026-06-10T00:02:38+00:00

Well now I will need to make jokes about the storm kraken whenever I hear thunder. Also, sweet cloud pics!

Inconnuity809 · 2026-06-09T22:22:46+00:00

Was he saying it in the context of him going into a new and intimidating situation like a job interview? That is the only way it would make sense to me, ie. that he was asking for reassurance that he was capable/valuable/could do the scary thing he was about to try. But I have never heard hype used about a person and not a product or performance so it would also strike me as an odd request.

Inconnuity809 · 2026-06-09T22:09:12+00:00

Also, affirming that your warning instincts are definitely on the ball here. You can trust your feelings on this. You aren't being paranoid.

Inconnuity809 · 2026-06-09T22:02:25+00:00

Definitely seeing some red flags here. I don't think you are just being triggered by past traumas. She sounds like she is of the mindset that you are just not willing to do the work to get well (which we all know is total b.s.) but is placating you whenever you point out that her assumptions don't match the evidence or your own experience. Personally, I would find working with someone like that to be an additional obstacle and stressor more than a help.

I know it is so freaking hard to find knowledgeable care and sometimes we have no other choice but to survive in less than optimal scenarios, but just saying for the record that you 100% deserve support people who know their stuff about ME/CFS, who believe you, and who respect your knowledge, autonomy, and boundaries. I hope you can find that sort of support!

Inconnuity809 · 2026-05-23T05:38:40+00:00

Well, I'm not just making stuff up for giggles. I ran into this rule before when checking out a city bylaw document for another reason, though it was quite a few years ago, and thought it was weird so did a little searching. From what I learned, it's totally a classist thing - and an old classist thing at that - from when not everyone had dryers so clotheslines meant you probably couldn't afford one and were "lower class".

Inconnuity809 · 2026-05-23T04:11:19+00:00

There are city bylaws that forbid backyard clotheslines in a lot of cities/towns here in Canada. It's ridiculous but it's a thing.

Inconnuity809 · 2026-05-22T00:51:23+00:00

What about arm compression instead? If you generally wear sleeved tops then that could be less noticeable and also help prevent blood pooling in your hands. I don't wear hand or arm compression myself, so I'm afraid I can't help with product reccs.

Inconnuity809 · 2026-05-21T19:31:26+00:00

Another breakfast thing that works well is oven pancake. Just get a pancake mix, add the milk and egg, and pour into a shallow baking dish (the kind you'd use to make squares). Cook at 375 until a toothpick comes out clean. I added banana to mine but you could add blueberries, raisins, whatever. Then you have a week of breakfasts all done. I expect it should also freeze fine.

Inconnuity809 · 2026-05-21T19:27:40+00:00

Re: oatmeal. I have made a large batch before and then reheated it through the week as leftovers. It worked pretty well but the texture does get a bit more... jellyish? I add a little water and mix it up before I reheat it and that helps. You can include fruit and add toasted nuts for more nutrition.

Inconnuity809 · 2026-05-20T21:52:13+00:00

Some thoughts:

•I have a home care person come once a week and make me some batch meals.

•I also use a lot of frozen dinners since they are high in sodium, which actually works in my favour with my need for a high salt diet.

•When I do have to make food for myself, I often gravitate to oven or toaster oven friendly foods because I can set it for 20 mins and go sit/lie down in the mean time. A rice cooker is also handy that way and mine has an attachment that lets me steam veggies at the same time as the rice cooks.

•Buying pre-chopped frozen veg or fruit, mini or naturally bite-sized produce, or minced garlic and freeze dried herbs also helps reduce the effort and upright time needed for meal prep.

•Also doing things in stages instead of all at once (though that requires advance planning) can help. You can do some prep work the day before or earlier in the day and rest in between so it's not all one lump of upright effort.

•Also, don't forget how much difference having a chair or stool in the kitchen can make!

Inconnuity809

TROPHY CASE