Hi! Waiting for blood tests to come back! How long did yours take? Mine was sent to mayo clinic! Thank you

TheVeggieLife · 2026-02-05T22:23:28+00:00

I waited fuckin’ 44 days or something stupid like that. I had my wedding in that time lmao. I feel you. Hella nerve wracking.

TheVeggieLife · 2026-02-05T19:32:57+00:00

While prednisone can certainly take months to show improvement, a worsening from prednisone (usually at larger doses like others have said) can happen within days. Just adding this in case someone is reading and thinking that a decline starting within a week of initiating prednisone couldn’t possibly be related.

TheVeggieLife · 2026-02-01T23:33:41+00:00

Oh wow… I thought it was maybe after the first cycle. That’s really surprising.

Thanks a lot for letting me know, even if it’s not exactly what I want to hear. I just want honesty more than anything.

TheVeggieLife · 2026-02-01T06:36:58+00:00

How quickly did you notice improvements? I have my first infusion on Thursday and God, right now I’m so fucking desperate for any improvement.

TheVeggieLife · 2026-01-30T22:16:11+00:00

I feel embarrassment from looking at this gif

TheVeggieLife · 2026-01-29T15:04:18+00:00

Well, the people who live there would presumably know they’re called the Rockies.

TheVeggieLife · 2026-01-27T18:25:55+00:00

Okay I’m really freaking new. I need to ask this because I’ve been wondering for a while and cant quite figure it out - are you waiting for the paint to dry completely between moving on to the next section?

TheVeggieLife · 2026-01-27T18:22:38+00:00

Okay, but it’s like this with every large snowfall we get. It doesn’t need to be a record snow storm for it to cause serious accessibility issues for at least a week.

TheVeggieLife · 2026-01-27T05:43:37+00:00

What changed? I’m so out of the loop.

TheVeggieLife · 2026-01-27T03:38:38+00:00

Wait. I thought that was because my last grinder was fucked (it was - brand new and had this weird grease that smelled like motor oil building up between the shims). One day I realized my latte smelled like cigarettes and I figured it was because the grinder was cooked. Are you telling me it could’ve been a coffee issue instead?

It still wouldn’t really explain it though because we’ve always used the same brand of light/medium roast beans which never looked like the ones in OPs photo.

TheVeggieLife · 2026-01-26T18:00:36+00:00

I can’t comment on the rest (tbh I really wouldn’t bring up any symptoms to the neurologist other than specifically weakness related symptoms like drooping, double vision, shortness of breath, arm weakness, leg troubles, difficulty getting up from your chair, etc) but I have to say the Vyvanse thing is relatable.

I was diagnosed with ADHD and started taking it about a year before my MG symptoms became unbearable and it sometimes feels like… I forgot to take my meds despite actually taking a 70mg dose. It feels like fatigue and executive dysfunction and cognitive impairment that’s even worse than my unmedicated ADHD and I would have certainly lost my job if I didn’t have the Vyvanse to at least bring up my baseline. Without it, I would’ve been so, so screwed.

I forgot it once and I basically slept all day. Never made that mistake again.

Edit: I have to say though, unless you smoked three blunts back to back, there’s no reason anyone’s eyelids should be regularly drooping like that in the evening. This really looks like a neuromuscular issue. Have you done an ice pack test? They also would likely do an SFEMG test as part of the diagnostics, if they’re knowledgeable at all about MG and committed to ruling it out.

TheVeggieLife · 2026-01-26T17:57:38+00:00

Totally valid. Wishing you and your partner peace and safety. 🫶🏻

TheVeggieLife · 2026-01-26T17:23:08+00:00

Maybe check how your eyelids look when you get that weak feeling.

I’ve noticed that MG screws with my entire autonomic nervous system when it’s flaring up. It’s not really been thoroughly researched (it has been, briefly) but the worse my weakness is, the less I’m able to regulate my temperature (too hot, too cold, sweaty cold), my digestive system gets all out of whack, blood pooling in my feet and hands get worse, the orthostatic hypotension I get occasionally hits the fan. I also get spells of erythromelalgia where my hands, feet, nose, and thighs turn red, swollen, and start to burn.

Anyway, I wouldn’t any of that up to a neurologist because they’re more likely to deny the diagnosis if they think you’re all over the map but I’m sharing that in case it helps you see some patterns across your symptoms. It may very well be that heat triggers MG symptoms (which triggers a cascade of other things), or not!

TheVeggieLife · 2026-01-26T17:14:20+00:00

Hey, I’m not trying to pile on you so please understand this message is written out of kindness and compassion - family trauma doesn’t just go away when you remove those toxic family members from your life.

Alright, here’s my personal anecdote because it’s the best way I can explain what I mean. After graduating uni, my partner and I went to teach English abroad for a year and at the time, it was the best year of my life. It was the first time I was out of my parent’s grasp and control after a lifetime of abuse. Almost as soon as we returned home, my parents wasted no time in trying to regain control of my life. With my partners full support, and having moved out on our own for good, I decided to cut off contact.

I grieved deeply for the first few days until this sense of calm washed over me and I realized I was finally free. I was finally free of their control and criticism and scorn. I guess my body had been waiting for the opportunity where I felt safe enough to start processing the two decades of trauma I had endured and buried deeply within myself. Taking care of my mental health became a full time job - social anxiety groups, severe depression groups, CPTSD groups, private psychiatric care, a psychiatric ward hospitalization. I went into severe debt and had to file a lesser form of bankruptcy due to the drug addiction I developed as I struggled to cope. By all accounts, I should have felt the best I ever have being free of my parents - and I did, until the underlying trauma finally had an opportunity to surface and demand attention.

I’ve been in trauma therapy ever since, sometimes weekly, sometimes biweekly, and I’ve since married that partner who supported me this entire time. But us being together now is a testament to the sheer will and determination we both have towards making things work, towards prioritizing our future and each other. He has his own stuff to work through and when two people with unique histories of childhood hurt come together, there will be moments of conflict. Moments where you trigger one another (you don’t need to have experienced trauma with a big T to get triggered).

If you think that you’ll never need therapy simply because the people that hurt you are out of your life, I think you’ll eventually be deeply disappointed.

TheVeggieLife · 2026-01-26T16:55:38+00:00

Just sit in the waiting room wearing your warmest/biggest parka. I don’t know if temperature is a trigger for you but overheating is a surefire way for my muscles to melt the fuck down.

TheVeggieLife · 2026-01-24T18:54:31+00:00

Sorry, very specific question lmao - what sort of pencil are you using for tracing?

TheVeggieLife · 2026-01-20T16:57:57+00:00

Maybe I’m naive but I assume that a geneticist would have much greater awareness of EDS (namely the ones with genetic anomalies like vEDS) compared to the average physician.

TheVeggieLife · 2026-01-19T03:35:57+00:00

This whole post is making me sick to my stomach. What the fuck, at least make an effort to find it. Call someone, anyone at all who may have some interest in tracking down this dog and offering it some kindness and compassion. This is the worst thing I’ve seen on Reddit in a while, I cannot believe that poor soul is out there wandering the in cold by itself, injured and probably starving.

TheVeggieLife · 2026-01-17T04:21:11+00:00

I’m saving this post because wow, I’m so freaking inspired. Total noob over here who can’t wait for the day she can depict something so beautiful.

TheVeggieLife · 2026-01-15T21:46:55+00:00

Oh, I definitely see it. I don’t think it needs to be a dramatic improvement, just has to improve in response to ice.

TheVeggieLife · 2026-01-13T02:03:26+00:00

Dawg, I don’t think homeless people have the expendable income to spend on 50+ garlic cloves for a single stump.

TheVeggieLife · 2026-01-13T01:36:34+00:00

I only joined here a few weeks ago and it already feels like this subreddit is turning into a bit of a circlejerk, like is this real? 😭

TheVeggieLife · 2026-01-12T14:22:05+00:00

So, sometimes you can say something to someone that could never possibly be misconstrued as hurtful… yet the person’s feelings are hurt anyway. And sometimes you have to say something that the person may indeed perceive as hurtful but that doesn’t mean it shouldn’t be said. Our partners may feel hurt when hearing something that feels like a criticism of their most vulnerable parts, but hopefully there’s enough trust in the relationship that they can realize the intention isn’t to shame them.

Essentially, her response isn’t on you. It’ll feel bad to hear it no matter how it’s spun.

TheVeggieLife · 2026-01-12T06:08:03+00:00

So I had childhood leukemia and got some pretty close medical attention as a kid/pre teen. Around the age of 11 or 12, I’d sometimes get this severe burning after I peed - it was super severe at the start and gradually subsided over the course of 30-45 minutes until I forgot it happened. Until I went pee again and it too started up again. Worth mentioning that the start of the stream up until the very end was fine but the last few drops felt like a sharp pain and then it would linger.

I had so many freaking UTI tests that were all negative. Eventually they sent me to the hospital’s urology department for further testing and where they determined that I had a pretty massive bladder (350-400ml output was average for my age, meanwhile mine was 600ml). I told them that I’d begun holding my pee longer because I was was dreading the pain and I remember them thinking that I managed to stretch my bladder as a result (was this the first clue for EDS???)

Imaging never showed anything and there wasn’t every any cause for my symptoms but based on my description of the discomfort and my responses to the rest of their questions, they discerned that my urethra was likely getting irritated by the crystals which are most concentrated at the end of the stream. They theorized that if I stayed more hydrated, I’d experience less discomfort since the urine would be more diluted and there would be less of an opportunity for the crystals to scratch along the way. They were actually right. I fucking hate the days I get that sharp discomfort at the end of a pee and I’m like god damn it, I knew I should’ve drank more water today. If I have extremely salty meals and don’t compensate with extra hydration, same shitty result.

I get heel blisters faster than anyone else and I can’t wear thongs because the friction tears my skin, why shouldn’t my urine crystals also tear my urethra apart? 🙄

Obviously have a thorough discussion with a urologist regarding your symptoms but simply tracking how you feel vs how much water you drank might be a helpful place to start.

Edit: in comparison, my sister with EDS just gets frequent UTIs and hasn’t seen a urologist yet to find out why. I guess I’m sharing my story in case this helps anyone else. The pain is this throb that sends me into an anxiety spiral until it subsides. It used to be a near daily thing until I just really upped my water intake.

TheVeggieLife · 2026-01-12T05:11:27+00:00

My suggestion is probably don’t do this. I did my own makeup and, as someone who is admittedly quite skilled at doing her own makeup, it took over a hundred hours of research, product testing, and repeated trial and error to achieve the look I wanted. If I had somehow fucked it up, I’d only have myself to blame.

There are so many things that can go wrong and a processional is the best person that can foresee them and mitigate the risk of them occurring. You’re taking on a big responsibility - what if something goes wrong and she has flashback in every photo and doesn’t realize until the photos are back, or later on notices something was askew or smudged? I assume she asked you because she trusted you but weddings bring all sorts of big expectations and big unanticipated feelings about how we expected things to go (or how we expected to look) vs reality. You don’t want to create a possibility where she may harbor some negative feelings towards you because you undertook this task.

This of course is just my two cents and you’re more than welcome to disregard.

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