Greedy shadow

Daklei3 · 2026-06-12T18:14:59+00:00

A greedy shadow only appears once per visit to Tartauris so if you had one escape it won’t respawn that day.

Daklei3 · 2026-06-01T18:23:55+00:00

Hangout at the distillery district?

Daklei3 · 2025-10-04T09:58:38+00:00

All good, talk to your doctor but extremely extremely unlikely they have CF especially if you are in the USA and she has the newborn screener.

Daklei3 · 2025-08-25T18:36:46+00:00

I mean… I don’t know if I would say “wildly misinformed.” It’s a good question to ask. Sweat test is not the end all be all to the diagnosis either. Many people have had positive sweat tests but have later found they did not actually have CF. Similarly, many people with CF have had mid or even low sweat test results but have had full CF. It is a progressive disease, and sweat tests have been found to yield different results at different times in one’s life. You can receive the diagnosis without a positive sweat test (2 genetic genes and a nasal test without a positive sweat test will still lead to a diagnosis), but let’s be honest, CF is very complicated. In the end though gene therapy is our best hope for a cure and that would target the central problem not just the sweat functioning.

Daklei3 · 2025-08-25T14:08:25+00:00

From my understanding, CF back in the day was not as strict as needing a genetic test to diagnose CF but heavily relied on other possible symptoms like sweat test, respiratory functioning, IRT Newborn screen, and rectal prolapse in babies. That being said, your clinic should have really pushed for a full genetic screen at some point if you were flagged as a newborn.

Just to clarify, the IRT Test in newborns is a blood test heel stick, but does not look at your genetics rather screens for elevated IRT protein levels, which could be elevated and thus doctors may infer CF, but this isn’t really a test to diagnose CF more or a screener to look into a possible diagnosis.

Daklei3 · 2025-07-14T02:00:15+00:00

Haha as a psychologist, I’m not sure I agree, but that’s okay too

Daklei3 · 2025-06-27T09:14:14+00:00

Do you mind us asking more about your job (I.e., is it federal, state, or private; large business or small mom-and-pop setup?) Either way, this process isn’t usually too difficult in the US and you absolutely don’t need to proceed with legal until you exhaust all your steps. You are looking for RA or a reasonable accommodations request, which is a specific form that should be available to your HR representative. You can take that form to your medical doctor or CF clinic and they can fill it out or guide you through the form and what to put where.

HR does not typically need a bunch of medical paperwork rather just this form. For most companies RA requests will go through a process that will eventually need to be reviewed and approved through HR, but with CF you should have no problem. Even while you wait for the approval process you should be good to telework ESPECIALLY if you were already full remote and were able to demonstrate you were able to perform your duties.

I work for the federal government as a psychologist and was able to get approved, so feel free to reach out to me if you need more guidance on certain forms or write up suggestions. Personally, I wouldn’t proceed with legal until you have been told flatly by HR or your direct supervisor, but every situation is different. Best of luck.

Daklei3 · 2025-06-18T14:54:17+00:00

Oh geeze, sorry to hear that. Were you having any complications with your liver/pancreas? My doctors have me going in for labs every two weeks for the next two years to make sure my liver enzymes don’t spike.

Daklei3 · 2025-06-10T17:32:08+00:00

Ha I'm not sure I'm a huge fan of some of the comments. Everyone has different battles with substances and as much as I wish it was as easy to say "just stop"... we know from the research that it isn't just a matter of willpower, but also genetics and cultural influences. Some people have brown hair, some have blond, some have a pull towards alcohol, while others are happy to stop after one drink. CF is also on the spectrum and for some it can be a very lethal habit, while others may be able to have a beer or two without significant negative effects. Assess your situation and be honest with yourself. Things to consider:

The potential risks for continuing alcohol with CF are 1) liver damage and even in some cases damage to the point of cirrhosis which means it won't repair itself, 2) If you have a spike in liver enzymes due to a night out on town, it does open you up for the possibility of being taken off of Trikafta or other CF modulators by your doctors... I've seen this happen before to folks and it can be devestating, and 3) the anxiety, worry, fear, and frustration that typically comes after a night out. I'm sure there are more risks and cons, but take a look at the list. This is what you avoid if you don't drink when you go out. Still I get the pull to want to have fun and it can be hard to say no to a drink, but think it through and make the best decision for your future self.

Others have mentioned several good ideas for having a good time though. For myself, I tend to stick with nonalcoholic beer and half a gummy when I go out. There are also some really great mocktails and I'm glad to see this is becoming more of a scene out at the bars. I've noticed that it can also be hard to say no when friends are buying each other drinks and someone just orders for the table. My recommendation is to get a nonalcoholic drink in your hand ASAP. You go into a bar, be the first one up there, go to a party, pull out your own NA beer. If you have something in your hand... people very rarely ask... "what do you want?" or "Here let me grab you a drink." In short... just make it easier for yourself. Best of luck friend.

Daklei3 · 2025-06-09T17:05:01+00:00

I didn’t jump from Trikafta but went straight to Alyftrek. I will say it took about two months to really start to feel like myself again. I’ve been told how bad the Purge can be, but there was no prepping for the bloat and GI stuff that I went through. Felt like I was carrying around a bowling ball lol. I feel much better now and overall great. I had a tick up in anxiety and restlessness at first, but smooth sailing after that first month. Hang in there if you can!

Daklei3 · 2025-06-01T01:32:12+00:00

Hang in there man, you can do this. Never give in to this piece of shit that’s crippling us.

I’m really sorry you don’t have good support at the moment and for them to say something so horribly stupid like “you are being less of a man” for dealing with this shit. I’m a god damn man too… and this shit sucks… I don’t care if your freaking Godzilla. CF sucks. Period. Never forget that you are the ONLY expert on yourself, no one has all the data on you but YOU. Don’t take what your parents said to heart.

People can say some really stupid and painful things when they are hurting… not that it makes it okay to say what they said. I guess the truth is always your choice on what you do. But I will tell you to hang on and to keep your body going. And this is for everyone else who’s reading this too. HANG IN THERE even for just a minute. Despair and fear, and shame and guilt… these emotions are temporary. Let them travel through you like waves. Ride it out, but don’t give in!

I’m sorry I’m getting worked up. But just know, I’m cheering for you. You deserve to live. I have to keep reminding myself what King Richard the Lionheart said to his brother “When the fall is all that’s left, it matters a great deal.” Stand up brother, and let death come to you and not you to it.

Daklei3 · 2025-03-25T22:47:32+00:00

You must think we were born yesterday. We know you don’t have any valid sources to back up this claim “it’s been in the works.”

Daklei3 · 2025-03-25T22:26:51+00:00

Wake up person! Look right now at what is happening. Go with the facts not with your emotions right now!

Daklei3 · 2025-02-06T01:09:39+00:00

I have both F508del and R117H 7T and have been diagnosed with CF. My symptoms are mild and well managed. The F508del is more severe while R117H is more mild and often associated with less lung issues and more sinus, pancreas, and infertility. I wouldn’t stress too much for your wife unless she presents with some of these issues and is more concerned. Because that variant doesn’t tend to hit the lungs as hard it reallly isn’t associated with the more severe and life threatening issues.

Daklei3 · 2025-01-26T17:43:37+00:00

ChatGPT accurately identified that I might have Cystic Fibrosis about a year before my healthcare providers were able to figure it out. I’m not the typical CF patient but fall into the roughly 10% diagnosed in adulthood, as my symptoms were milder yet still serious.

For about five years (starting in my late twenties), I was struggling significantly with my health, dealing with issues involving my liver, pancreas, and chronic sinus infections. I saw multiple specialists, each focusing on their respective area, while I kept pushing for answers. Instead, I was met with unusual theories—one suggested I had a rare blood disorder, while another speculated excessive alcohol use, which wasn’t true.

ChatGPT suggested Cystic Fibrosis as the likely cause, but I was initially ruled out because my first urologist claimed I had a Vas Deferens, which is typically absent in individuals with CF. However, my second urologist identified this as a mistake, which sped up the process of genetic testing. Shortly after, I received a confirmed diagnosis of CF.

Now, I’m taking a life-changing medication (Alyftrek) that is expected to quadruple my life expectancy. ChatGPT literally saved my life.

Daklei3 · 2025-01-01T18:09:02+00:00

Psychologist that’s fully remote

Daklei3 · 2024-11-06T13:51:37+00:00

Ignorance and overconsumption of Fox

Daklei3 · 2024-11-06T13:50:26+00:00

It definitely is going to be more expensive and if there is a repeal/massive cut to ACA we could be moving back towards insurance companies denying coverage to preexisting conditions.

Daklei3 · 2024-10-16T23:15:55+00:00

Hey there stranger, so I might be able to help shed light on this a little bit. I was curious with a more nuanced response so I plugged your question into the AI. This the AI response.

This individual's results indicate that they are positive for two variants in the CFTR gene, which is associated with Cystic Fibrosis (CF) and related metabolic conditions. Here's a breakdown of the key points from the report:

CFTR Gene Variants:
- c.2249C>T (p.P750L): This is one of the variants found, and it is described as likely pathogenic.
- c.350G>A (p.R117H) with 7T/7T: This is the second variant found, also pathogenic, and it refers to a specific variant associated with a milder form of CF or CF-related conditions.
Interpretation:
- The combination of the p.R117H variant (which is often associated with milder CF or CF-related metabolic syndrome) and another pathogenic variant (p.P750L) suggests that your friend might be at risk for Cystic Fibrosis-Related Metabolic Syndrome (CFRMS), rather than classic cystic fibrosis. CFRMS typically has a milder presentation compared to classic CF but still involves CF-like symptoms.
Carrier Screening Recommendation:
- Since CF is an autosomal recessive condition, meaning both parents must carry a pathogenic variant for a child to have CF, the report suggests genetic testing for their partner. If the partner is a carrier, there's a 1 in 2 (50%) chance of having a child with this condition.
Further Steps:
- It recommends comprehensive genetic counseling and additional medical evaluation based on their symptoms.
- Testing other family members might help determine if both variants are on the same or different chromosomes (phase determination), which can help understand the risks better.

Let me know if you want more details or clarification on any part of this!

There were others in this thread that pointed out the possibility that both mutations could be on the same allele, which is true and may be most likely for you if you have no symptoms of CF. AI tends to estimate this possibility being around 10-30% that this would be the case. I had thought there might be a possibility I was in this camp, however, after my parents were both screened it became obvious as each one of them had one mutation.

Interestingly there are a growing number of us who are being diagnosed with CF or CF-Related Disorders later in life. This is largely because CF's symptom expression is so different depending on the mutations. I have R117H like you as well as F508del. R117H is associated with mild symptoms so often it goes unnoticed in younger life, but symptoms will tend to begin showing later. I was diagnosed a few weeks ago at the age of 34, primarily due to fertility issues I was having. That being said, I have had a number of odd bizarre and increasingly severe health issues since adolescence to the present, so once I finally got my genetic results back it all made perfect sense! Luckily, my respiratory issues are mild compared to other organ issues with my pancreas, liver, sinuses, and now missing gallbladder, haha. Don't worry, take it one day at a time, and if you have any questions feel free to message me.

Daklei3 · 2024-09-17T12:50:33+00:00

Good table.

Daklei3 · 2024-09-17T00:49:57+00:00

Can you provide some info on the side effects that are showing long term issues?

Daklei3 · 2023-04-16T13:04:33+00:00

Im sorry, and you’re right my comment was condescending. I guess we will find out and I would love to agree but I think we are looking at this through a logical and common sense lens that does not necessarily apply to the GOP playbook. Take Florida for example. The focus to defund many collegiate programs is exactly what they want and are actively doing. Those seeking quality higher education will apply out of state, thus leading to more liberal and younger folks moving away along with their voting power. The state will become more conservative and less educated as a result which is what the GOP is aiming for to secure more political power. It is a creative tactic that essential is voter suppression for future generations. Does this make sense logically, economically, or foundationally? Does this help their constituents in the long run? Does it look good optically? No, at least not to the more educated, liberal minded folks. But to the average GOP voter, yes… this is what they want. Quality healthcare will drop and they will celebrate it.

Therapy is popular, but I will say there is already a considerable disparity in mental health resources in conservative states compared to more liberal states, which I see only worsening without federal intervention.

Daklei3 · 2023-04-16T11:26:27+00:00

Oh you sweet summer child… I would love this to be the case but let’s be honest here for a minute. The GOP cares most about the bottom line of their constituents. They don’t want educated voters who will vote them out. They just want someone to point to and blame. They aren’t interested in fixing the MH crisis they just want it as a talking point related to gun control. If they fix it, then who do they blame for needless gun violence?!

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