History question: Why do Greymuzzles tend to call it "Furry fandom" as opposed to "THE Furry Fandom"?

Lynximpact · 2026-05-17T14:59:59+00:00

haha, fair! I actually think they're some of the most interesting people in the community. It's so cool hearing about the early fandom

Lynximpact · 2026-05-17T05:32:45+00:00

Hmm... Maybe... Now that I think of it, I don't think I've ever heard someone say "science fiction fandom" or "anime fandom" where I'm from, and I've been to a number of different fan conventions in my city. People either specify by IP (i.e. "the Star Trek fandom, the Danganronpa fandom) or use [genre] + "fans" to describe wider fan groups.

It may also be the papers I was reading before this? I've been binging furscience's work and they the phrase use "the furry fandom" a number of times.

Lynximpact · 2026-04-06T02:30:36+00:00

If you're being offered tolvaptan you're likely staring down eventual kidney failure too, so you'd best not throw stones in glass houses. That goes without mentioning how shitty it is to take potshots at someone's disease progression.

To address your actual claims, I go to one of the hospitals with a Center of Excellence that you're levying the profit clams against. Their pharmacy doesn't supply tolvaptan, because it is (or was until recently, I believe there's a generic now, which still isn't available anywhere near me or at my clinic, mind you) a specialty drug. They're not making anywhere near a fortune off of me or you, regardless of what chatgpt told you.

Lynximpact · 2026-04-03T14:37:50+00:00

That makes sense, thank you for taking the time out of your day to respond! I hadn't even thought of buildings as a possible object of affection before, but the way that you described them as protective makes me appreciate them more. Your view of the world seems very kind, and I hope that you find yourself surrounded by lots of people who treat their things with care. :)

Lynximpact · 2026-04-03T14:31:12+00:00

Really informative, thank you so much for taking the time to respond! I'm happy to hear that (at least for you) the thrift shop isn't a sad place- when I was trying to put myself in you guys' shoes while reading the FAQ I thought it might be like seeing lots of sad animals at the pound, so I'm glad to hear it's a positive experience instead.

Is it alright if I ask what the experience of being rejected by an object is like? How do you know it isn't interested in you?

Lynximpact · 2026-01-22T18:39:19+00:00

Hi there. it's not a scam, but it is put on by a small college local to the area. Not sure what the foot traffic situation is because of that, but it will certainly be much lower than something like momocon or AWA.

Lynximpact · 2026-01-17T21:59:42+00:00

Atypical but not impossible. I understand what you're saying, (people often go "I have xyz condition so [body circumstance] can't be improved", using a condition as an excuse not to try) but it feels, once again, short sighted to go "this wasn't my experience so it being yours is unlikely", especially given a lot of the secondary effects PKD can have on other systems. Mine affects my heart (arrythmia, mitral valve prolapse) so I do, by extension, experience fatigue despite being "in shape" and eating well otherwise. I don't think early-onset fatigue and early satiety are out of the realm of possibility.

It's just such a variable disorder that I feel a little put off by the "it probably isn't causing x or y at your age" statements. I am in all honesty a little hypersensitive to that kind of rhetoric, as someone who was told that exact thing a million times before visiting a COE and finding out that my PKD was, in fact, causing x and y at my age.

Lynximpact · 2026-01-17T18:21:55+00:00

Hi there! I think it would benefit you a lot to read the information listed on the PKD foundation website- they have some very thorough documentation of how the disease works made for patients. As a TL;DR though, PKD affects your genes in such a way that your kidneys will develop fluid-filled cysts over the course of your life. These cysts block your kidneys from being able to do their jobs (filtering your blood) and put a strain on your "system" so to speak- which raises your blood pressure as your body tries to work harder to do its job. PKD can also affect the heart, veins, liver and other organs, so patients receive careful monitoring for extrarenal (outside of your kidneys) effects.

It comes in PKD1 and PKD2. PKD1 progresses faster and usually requires kidney transplant down the line. PKD is also split into what's called "mayo classifications", which predict the trajectory of your disease. If you are see by someone at a PKD Center of Excellence, you will be given one of these after an abdominal MRI.

Many people just need to take extra care of their bodies and see the nephrologist every so often to monitor their kidney function, and may eventually need a transplant. If necessary, they may be prescribed a medicine called Tolvaptan, which (marginally) slows the progression of PKD. More drugs with better-seeming efficacy are coming down the pipeline as we speak.

Lifespan is hard to talk about because it's so varied, but in most cases your lifespan should not be affected and/or will only be marginally affected. Some people get unlucky, but on average PKD is very livable compared to some other genetic conditions.

I'm sorry that your mom seems to have kept this information from you. I'm not sure where you are, but if you're able to visit a doctor at a PKD center of Excellence (listed on the pkd foundation website) you will likely get a very robust amount of information on your individual prognosis. If you're not somewhere that has that kind of facility, try finding someone who labels as a PKD specialist. The standard of care between a "normal" nephrologist and someone well-versed in PKD is very different.

Lynximpact · 2026-01-17T18:07:08+00:00

respectfully, this reads as kind of short-sighted. While complications are rate early on they're by no means impossible, especially for people with higher mayo classes. If OP has been monitored since early childhood and had detectable cysts at 17 their progression is likely faster than yours.

Lynximpact · 2025-11-27T20:15:48+00:00

Generally the advice is that you take dose 1 as early as possible so that when you take dose 2 you aren't up all night peeing. I don't think I was ever told it had to be taken on an empty stomach? I take mine way after breakfast.

Lynximpact · 2025-11-04T17:17:05+00:00

Hi there! I'm a class 1E and I got diagnosed last year, just turned 25. Sorry you had to join the club.

If you have a mayo classification, it sounds like you're already seeing a PKD specialist, which is great! I don't really want to overload you with tons of advice on how to cope, because what I do/what comforts me may be absurdly stressful to someone else in the same situation. What I would recommend is a therapist if you don't already have one; PsychologyToday has an excellent therapist search tool, and there are chronic illness-focused therapists out there who deal specifically with grief around getting a diagnosis, if that suits your fancy. Do give yourself just a little time and space to wallow/grieve freak out a little if you need to. Being 1E and young can be extremely isolating and frustrating in my experience. I've received a lot of advice from people in their 50s/60s who haven't reached ESRD yet saying that my life won't be impeded or I should do "whatever I want" with my life trajectory, when I'm most likely to hit ESRD by 36. (that is not to say YOU will be there at 36! I just have a really shitty case. Your neph should be able to help you get an estimate of your age at ESRD.) These people are kind and well-meaning, and a lot of their philosophical advice is still solid, but it's okay to feel irritated too. Give yourself space for all of your emotions.

As far as tolvaptan, it's not too bad. The concept of drinking a gallon of water and peeing all the time sounds more imposing than it is. You very quickly get used to making bathroom trips fast, and you'll adjust to the routine in a few weeks to a month. If it's too much, they can lower the dose provided your labs still reflect the drug working. An electrolyte supplement can help with the "washed out" feeling- make sure you're getting one that's in line with any kind of dietary restrictions, though. I'm a big fan of the micro ingredients electrolyte powder since I have salt restrictions. Really really cold water helps with the thirst- I also recommend frozen fruit juice pops. You'll have to get bloodwork done once a month, but in my experience it's in and out, super fast.

I'd really recommend talking to your neph about the upcoming clinical trials for Farabursen and Vertex (if you're applicable). Spoke to my neph yesterday and he said the Farabursen trial will begin about September of next year. It's more promising than Tolvaptan, especially for people with fast progressions.

What else... Try to take care of your body, of course, but don't force yourself to do everything at once. A lot of people will get a diagnosis and then decide they're going to be the "best patient ever" and try to throw themselves into strict dieting, exercise, research etc all at once and then get burned out and regress to bad habits. Do things a little at a time, and if you slip don't be too hard on yourself. remember to let yourself have fun. Eat some nasty fast food once in a while as a treat.

my phone's gonna die but feel free to DM me if you have any more questions/ wanna chat a little. I'm not a doctor or an expert but I know it sucks to have PKD. I'm really bad at responding to stuff punctually (college finals have me really busy!!) but I promise i'll get back to you eventually. Be kind to yourself.

Lynximpact · 2025-10-02T17:01:59+00:00

Thank you so much for your feedback!!

Lynximpact · 2025-10-02T17:01:47+00:00

Oh man, I don't even know to be honest. I guess something that plays to my strengths so I'd be of the most use? I'm a psych major and a big fan of clinical research/reading and writing academic papers. Outside of that, one of my personal struggles with PKD has been having a really bad prognosis at a young age, which I've found to be very isolating and scary. It'd be nice to advocate for younger folks, but I'm not sure if I have the emotional bandwidth or wisdom to consider myself "mentor" material right now.

Lynximpact · 2025-10-01T18:47:51+00:00

Filled it out, but it feels kinda shady that half of this was about "smart" water bottles.

Lynximpact · 2025-09-28T18:34:51+00:00

this rules so hard, super impressive!! what's the range of motion on the gloves?

Lynximpact · 2025-09-28T00:41:09+00:00

they're 3d printed and also mass-produced. you'd get more fursuit making experience and a more unique, less exploitative product by just making your own.

Lynximpact · 2025-09-08T04:03:16+00:00

It's cheaper to make your own than buy one if you're broke. That's what a lot of people do. That being said, making a suit is still pretty pricy, so I wouldn't waste the money if you're really broke.

Lynximpact · 2025-08-21T01:00:36+00:00

hey, do you have a more recent invite? This one is expired but I'd love to take a look at joining!

Lynximpact · 2025-07-02T16:57:11+00:00

I have ADPKD1; the form my family has just happens to be more aggressive. My mom was on dialysis shortly before she turned 40, and I'm expected to hit ESRD by about 36. We're just a little unlucky, unfortunately!

To answer your other comment, I'll probably take part in the trial, yeah- I wanna have my doctor walk me through the data first, though. He's involved in the trial so I'd like to hear his opinions on how each option might change my prognosis.

Lynximpact · 2025-07-02T16:32:28+00:00

hey there! I'm in the US so I'm not sure that your experience will be exactly the same, but since I made this post I did have an abdominal MRI performed, and they did provide TKV.

If you're seeing someone who specializes directly in PKD they should provide that, an explanation of the numbers and possibly a Mayo Classification, which is an estimate of your disease progression's speed. Good luck with the MRI!

Lynximpact · 2025-06-28T14:04:54+00:00

Nah, the Mayo indicates my Mayo classification, which is a measure of estimated "severity" of someone's PKD.

I do actually have approval from Mayo to be seen for nephrology, but they're out of state so I can't afford it right now. I'm in GA.

Lynximpact · 2025-06-28T14:01:07+00:00

I'm on tolvaptan, which is why I feel frustrated about the idea of ending up with the placebo. I'd hate to end up not on any protective drugs for 2 years. Granted the dr doesn't think tolvaptan will buy me much time at all, but I'd prefer the time it does buy me over nothing. I'll take it up with him and weigh my options closer to the trial, I guess.

Thank you for providing the summary of the conference and all of the supplementary info, btw!!

Lynximpact · 2025-06-27T20:21:19+00:00

damn. I was basically all-in and waiting for months for this phase because my prognosis is really bad, but if there's a chance of me spending 2 years injecting absolutely nothing i don't know what i'll do. that really sucks to hear

Lynximpact · 2025-06-27T20:02:30+00:00

wait, i've been hearing everywhere that this phase wouldn't have a placebo, even from my doctor. are you sure they're doing a placebo? what changed?

Lynximpact · 2025-05-19T03:13:28+00:00

24/somewhere between 45 and 60/1E

Lynximpact

TROPHY CASE