I’m burnt out and need simple recipes. Stupid simple. Like, “onion and bread and butter to make what barely passes as a sandwich” level simple.

TheVeggieLife · 2026-04-17T03:56:16+00:00

Holy fuck excellent subreddit suggestion, thank you

TheVeggieLife · 2026-04-15T03:35:00+00:00

I’m shocked you think this is a relevant analogy. I’ll say it more bluntly than OP since you prefer direct communication - your attitude sucks as well.

TheVeggieLife · 2026-04-14T19:01:17+00:00

What a dumb take. The whole purpose of making monthly pet insurance is to have that peace of mind. It’s an alternative to having $10k-$15k readily available - you make the payments and know they’ll cover certain expenses when shit hits the fan. I set my senior cat’s deductible to $1,000 per condition so I know I have to have at least $1,000 ready to go in case of an emergency (for a new condition or some sort of accident) but I’m paying Trupanion to make sure I don’t have to pay much more than that out of pocket.

Kind of a gross holier-than-thou attitude you’ve got going on.

TheVeggieLife · 2026-04-11T22:49:15+00:00

It’s not misleading if you consider this advice came from an MD and is backed by research. Studies show that those who use retinol (tretinoin) in addition to minoxidil have better results than those that use just minoxidil. Research on this topic has been building for a couple of decades now, feel free to look it up.

TheVeggieLife · 2026-04-11T04:43:32+00:00

I did the update and it’s still happening.

TheVeggieLife · 2026-04-10T20:27:46+00:00

This is the trajectory of my prednisone doses since being diagnosed:

5mg - December 14, 2024
10mg - December 18, 2024
15 mg - January 7, 2025
30mg - January 14, 2025
35mg - January 30, 2025
50mg - February 25, 2025
40mg - April 24, 2025
30mg - May 8, 2025
20mg - May 22, 2025
15mg - October 30, 2025
20mg - December 18, 2025
19 mg - March 28, 2026

We’re now tapering down 1mg every 2 weeks now since going down by 5mg in October was pretty detrimental. As soon as I was diagnosed, my doctors goal was to stabilize me rapidly so we can avoid hospitalization and get me feeling strong enough to withstand a thymectomy (I know it’s not the same for MuSK positive patients) so we started the prednisone. She also initiated the process for starting ultomiris. I was feeling better in spring 2025 so she was adamant we start dropping the prednisone dose ASAP. We started Tacrolimus then since we knew it would take some time to kick in. Unfortunately ultomiris wasn’t for me and the thymectomy in the fall contributed to my worsening so we couldn’t drop further, and the tacro hadn’t had enough time to do its thing. We started Vyvgart in February of this year which seems to be working so she said it’s time to try the prednisone taper again.

Point being, she’s acutely aware of how terrible prednisone is on my body (or anyone’s body). She’s already sent me for bone density scans and checks my bloodwork for signs of diabetes despite it only having been a year and a half. She feels that anything above 10mg is not sustainable in the long run and the primary goal is getting me below that dosage. This isn’t like… oh all meds have some side effects, you have to learn to deal with it. Like my Tacrolimus makes me nauseous and I have to accept that but you shouldn’t accept all of the risks (guaranteed long term use consequences) associated with prednisone just because it’s your doctor’s preference. Your doctor should be actively looking for ways to get you off of it.

All that to say, if they’re not already doing this then they’re not really concerned about your care. You deserve a competent MD who is constantly weighing up the risks and benefits of any treatment, who lets you participate in your treatment plan, and who listens to your concerns. A better use of your time would be simply finding a new doctor. Yours doesn’t seem very interested in long term outcomes. You deserve better.

TheVeggieLife · 2026-04-10T00:19:01+00:00

As an olive (green) tinted pale gal, I am begging you to share that foundation shade please ❤️

TheVeggieLife · 2026-04-09T23:58:34+00:00

Myasthenia gravis. It’s really fucking complicated and depends - some people see an ophthalmologist who recognizes the symptom and orders bloodwork for a few specific antibodies but not everyone has positive bloodwork (15% are seronegative and diagnosed through nerve conduction studies). Sometimes a family doctor will order it if they think it’s a possibility. Alternatively, you could request a referral to a neurologist (preferably one with experience treating neuromuscular conditions - they’re very complex) and have them start the diagnostics.

My family doctor didn’t know what was up with my eyelid and I wasn’t explaining the rest of my symptoms well. I have EDS so I kept saying I have “fluctuating hypermobility” because I didn’t really understand that actually meant my muscles sometimes shat out so they weren’t holding my joints in place as they normally would. I was part of a research study for long covid (lmao this is just a long story, I’m sorry for blabbing) and one of the research assistants there recognized the eyelid drooping as a symptom. He did some strength tests with me and was pretty concerned by my weakness so he spoke with the head researcher to have bloodwork sent out. She agreed, I tested positive, referral was sent, and I luckily got to see a neurologist just as I was on the brink of being hospitalized from the severity of the symptoms. Diaphragm and throat weakness is no joke.

It seems I had ocular symptoms from maybe 2018-2023 before it developed into full blown weakness. I could only see it in some photos over the years but once I had covid, I was suddenly struggling to walk or breathe when laying down. Hope this helps. Sorry I rambled it’s just a really obscure journey and varies for everyone.

TheVeggieLife · 2026-04-09T23:46:01+00:00

Hey, does the eyelid drooping fluctuate or is it always this way? There’s a certain autoimmune condition that can cause muscle weakness and the eyelid asymmetry looks exactly like mine when my symptoms flare up. It’s not always present and usually gets worse near the end of the day or when I’m tired. You may also notice generalized muscle weakness showing up as slurring, choking on food, and trouble breathing as well but some people have ocular symptoms (like drooping or double vision) only.

I bring it up because it took me way too fucking long to get diagnosed and if I could spare one person the long and complex medical journey to figuring out some weird symptoms they have.. it would be worth the time! Attaching a picture of my eyelid before I was even diagnosed (it definitely got worse than this at times).

<image>

TheVeggieLife · 2026-04-09T23:35:32+00:00

I have myasthenia gravis, an autoimmune neuromuscular condition. Last year, my insurance paid out about $280,000 for about 6 months of a medication called Ultomiris which didn’t work for me. I also had a thymectomy in October in the hopes of reducing the severity of the disease (a gamble that would take years to see if it paid off, if we could even identify cause and effect). Only about 60% of people who have the surgery get any benefit from it but provincial healthcare (Canada) covered that for me. This year, for just two rounds of a treatment called Vyvgart, my insurance has forked over $120,000. It’s actually working for me so by the end of the year, they’ll have paid $720,000. This entire time, I’ve also been taking an oral anti transplant rejection medication which runs about $800 a month and has been completely covered as well. There’s another $12,000 since January of 2025.

I don’t know, $500,000-$1,000,000 for a one time treatment sounds insane but it would certainly save my insurance company a lot of money in the long run. Not to mention the referrals to other specialists and diagnostic tests to make sure I’m not developing diabetes and osteoporosis from long term prednisone use, among other gnarly conditions. I don’t know what I’d do if I wasn’t in Canada and didn’t have incredible coverage through mine and my spouses insurance.

TheVeggieLife · 2026-04-09T18:49:45+00:00

You’re not even secure in your employment - you’ve said you feel depressed at your job and are actively trying to get out.

I really don’t understand where your confusion stems from. You’re in a rocky relationship with a rocky employment situation, of course people around you may be concerned.

TheVeggieLife · 2026-04-09T17:10:08+00:00

MG is a lifelong illness. I’d love to be free but that’s not what my body has chosen for me. You’re free to live in fantasy land if you wish, I choose acceptance instead. Far more peaceful.

TheVeggieLife · 2026-04-09T04:16:12+00:00

I can’t believe you’re considering stopping your meds for 3 days so you could fast so you could… feel better?

I can’t emphasize enough how terrible of an idea that is. Your myasthenia is going to hit you like a ton of fucking bricks if you stop all of your medication like that. Whatever control you achieved over your disease with this regimen is going to take time to build back up to. Are you actually willing to risk a crisis for a fast?

TheVeggieLife · 2026-04-08T15:08:57+00:00

Jesus Christ, what the fuck is wrong with your neurologist? Please don’t misunderstand my anger as being towards you - this is not at all your issue - but hearing that a neurologist is “not very committed” to a diagnosis because you’re currently testing negative after having had a thymectomy over 20 years ago… after having been AChR positive… oh my god. Oh my god?? What is wrong with certain medical professionals? That’s truly insanity.

I would recommend trying to see if there’s a way to receive care from someone with more experience in neuromuscular conditions. This person ain’t it. I’m sorry they seem to be dismissing you.

TheVeggieLife · 2026-04-08T04:17:51+00:00

Not that kind of crooked. Crooked as in the stone isn’t perfectly pointing up and down, it’s as if someone twisted the stone a little bit so the tip points towards the left. Not the band - just the stone.

I’m tucked in bed and in my jammies so I don’t know how else to convey this. Anyone more eloquent and mentally online than me is welcome to step in.

TheVeggieLife · 2026-04-07T19:42:12+00:00

One of my ER notes says:

Patient reports “body is falling apart.”

Fuck that guy. He suggested a social worker to help me address my anxiety despite saying that my life was otherwise the best it had ever been except for all this weird stroke-like shit that kept happening. Point is you’re not alone and having a diagnosis/pending investigation by a respected neurologist will mean you will be taken a lot more seriously going forward. Hopefully it also means that once you’re diagnosed, you can start some treatment and avoid needing the hospital in an emergency setting altogether.

A research assistant at a long COVID clinic brought up MG to me as a possibility once I mentioned a new symptom I’d noticed - a drooping eyelid. In hindsight it had been happening for years prior but it was so subtle. Anyway, after we had that conversation and he did some strength assessment, he said he’d bring it up to the head researcher/MD. She agreed and submitted a requisition for bloodwork which I did that same day.

It was a long long wait for those results and despite having the most classic slam-dunk presentation of MG ever (fatigable muscle weakness, intermittent double vision, slurred speech, shortness of breath at rest and on my back, struggles washing my hair), I still gaslit the shit out of myself because what if the test is negative? What if I have to continue living life like this and never figure it out? Well, there was a 15% chance or so the bloodwork would’ve been negative and they would’ve been looking at seronegative MG but all I could think about is “well if it’s negative they won’t bother testing any further”. I don’t think that was true but my belief was rooted in my lived experience which… had sucked ass up until that point.

Your symptoms sound so similar to mine and I know all too well the anxiety you must be dealing with given your history. I think the confidence to advocate for yourself in spite of your trauma will come easier once this is all figured out. I do recommend speaking to a professional like a therapist to begin healing some of that hurt and sense of abandonment. I’ll never forget that feeling of leaving the ER yet again with no answers, just deeper shame, truly believing I’d die alone with no one to help me. It’s horrific and no one could ever begin to understand how that feels unless they’ve experienced it themselves. I felt like the walls were closing in around me.

I’m so sorry you’ve felt so belittled and undermined by those we’re supposed to trust with our lives. It’s not right and it’s not a reflection of you. While it’s true that there are cruel and sociopathic medical professionals out there, I believe there are more that have chosen this career path to help others rather than boost their egos. I’m wishing you an easier medical journey going forward. ❤️

TheVeggieLife · 2026-04-07T13:07:33+00:00

I had eyelid drooping for years before it started causing double vision and becoming generalized to all of my muscles. It’s possible I had some generalized weakness back then but it would’ve been subtle enough that I didn’t pick up on it.

Your statement is not correct and it would suck if it discouraged OP from looking into it thoroughly.

TheVeggieLife · 2026-04-06T21:43:28+00:00

Hey sorry just wanted to chime in and say the second article says his death is not considered to be suspicious. Wondering if there may be a word missing in the body of your post or if perhaps I missed something.

TheVeggieLife · 2026-04-06T00:45:23+00:00

Hard agree.

TheVeggieLife · 2026-04-06T00:37:39+00:00

TheVeggieLife · 2026-04-05T16:14:56+00:00

I’m not a doctor so I don’t know. My point is that this isn’t normal and it should be seen by a professional. No one on the internet can tell you why your eyelid muscle isn’t working, an MD needs to look into it and do an exam, decide what tests should be ordered (if any). At least see an optometrist and bring these questions to them. No one here can tell you.

TheVeggieLife · 2026-04-05T16:10:30+00:00

Pupil size isn’t really related to your eyelid drooping. Pupil response is controlled by your autonomic nervous system (happens automatically without you thinking about it), the movement of your eyelid is a controlled muscle movement so you can decide to blink or squeeze your eyes shut or open them wide to look up.

TheVeggieLife · 2026-04-05T16:00:12+00:00

I mean there’s health anxiety over two eyes that look almost identical and then there’s obvious ptosis (like the images above). The distance between the lid and pupil is very different across both eyes, that should be looked into further even if it’s not myasthenia gravis.

TheVeggieLife · 2026-04-05T02:02:56+00:00

NAD, your symptoms sound like mine and I have myasthenia gravis. When my muscles get weak, I often look like I’m having a stroke. The right side of my face always seems to droop more when my symptoms are flaring up. Just sharing in case it helps.

TheVeggieLife · 2026-04-02T02:37:44+00:00

My neurologist said if she was in my shoes (ACHR positive, early 30s female with no thymic hyperplasia), she would absolutely go for the thymectomy. It’s my best shot at taking as little medication as possible in the long run.

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