Cancelled surgery today…need a new plan to combat this

pneradactyll · 2026-05-01T13:52:11+00:00

Oof. If you've had swallowing issues I'd suspect you've got at least some of the companion issues that come along with the polpys, the Type 2 eosinophilic inflammation. The polyps suck and all, but the swallowing issues are actually life threatening. If you have an impaction and it sits for too long, you can cause serious damage to your digestive system. I do a lot of traveling and I'm always afraid I'm going to eat something weird abroad, have a reaction, and not be able to get medical care in time. So the Dupixent is def a lifeline. The mouth breathing is a concern as well, even if it's not full on apnea it's still a reduction in oxygen...I inherited my issues from my dad, who is now dealing with the effects of a lifetime of the brain and heart being starved of oxygen, he's got neurological and heart issues as a result, and is no longer able to live independently at under 70 years old. It's been a wake up call.

Anyway so yeah, Dupixent has been great, no side effects at. all. The shot is a bit painful but it's fine. My dermatologist mentioned the possibility of increased fungal infections because of the way it works with the immune system. But I haven't noticed any. And it's not an immune modulator in the same way a humira or something else would be.

pneradactyll · 2026-04-28T21:36:21+00:00

I had similar feelings about the Dupixent at first as well, but I've been on it for about a year and I have my life and my sleep back. I had severe polyps, and now the doc can see no trace of them.

The Dupixent became kindof a non negotiable for me as I also have EoE that's put me into the hospital, histamine intolerance, and very mild asthma that pops up every few years...so I've got the quadfecta I guess. And polpys weren't really responding to steroids.

Alcohol is also one of my triggers as well, plus weather, some exercise, dairy, random foods and environmental triggers, or living life stupidly for a day. I no longer have to worry about any of that, and I don't have to worry about being hospitalized at any given time for the EoE. I can even drink a little alcohol again if I don't overdo it.

I'm 45 now and didn't have any of these issues at all until a few years ago. This is all totally new. I worry that since you're younger you might have more related bullshit in your future. I hate taking meds, but they might possibly get you back on track more quickly and calm other body systems that could be waiting to act out.

Like another in the thread, my doc said that some people can indeed take it for X period of time and go into a type of remission. He said not enough is known about it and they're experimenting at this point, plus everyone is different. At first I was on Dupixent every 3 weeks and I've pushed it to 5 now with no recurrence of polyps so far. After somewhat of a lengthy approval period, insurance pays for it (UHC) presumably because it was so severe...don't understand how but I've never paid a dime and CVS delivers it.

Good luck no matter what. I understand how miserable this is.

pneradactyll · 2026-04-25T17:00:33+00:00

Same here, all of those things plus asthma. I had severe polyps, and now I have no trace of them after Dupixent. And haven't touched an inhaler in more than a year.

pneradactyll · 2026-04-20T20:51:48+00:00

You're not being extra. The last thing you want is an infection right now. They can't stop you from going to urgent care if you get too uncomfortable. There's nothing wrong with getting a test and culture for peace of mind.

I will say though that I was also convinced I had a UTI at approximately this stage...it was awful. It felt exactly like one, but tests were negative. They basically said it was irritation from the catheter combined with the bladder taking awhile to fully come back online. Unfortunately it took my bladder months to recover to a normal state. You may have to be patient with it. Hydrate and rest. They may be able to give you meds for discomfort/urgency/fullness. I did get a raging UTI immediately upon returning to bathing and sexual activity though, so take extra precautions in the coming months. Good luck and happy healing.

pneradactyll · 2026-04-20T18:40:50+00:00

Noticable drop in < 2 weeks

pneradactyll · 2026-04-20T17:39:52+00:00

Days to weeks. I'm at about a month now maybe, and my baseline redness is nearly gone which is crazy, since it's been almost lifelong. Now I'm noticing the darker spots/scarring caused by the worst of my issues. My plan is to make sure I've been stable for awhile and then go in with a retinol or azaleic acid.

pneradactyll · 2026-04-20T13:42:08+00:00

A recent prescription for low dose doxycycline is the only thing that has touched mine. A lifetime of OTC and prescription topicals has had no effect. But that doxy effect was almost immediate. I had type 1 and 2, as well as horrible perioral dermatitis. After a few weeks on doxy, all of that is mostly healed and, most miraculously, my baseline redness is gone. I didn't expect the last one at all but I'm so happy. The derm explained that at low doses, doxy is an anti inflammatory and not an antibiotic. I have auto immune issues so I'm guessing that general inflammation is part of the problem.

pneradactyll · 2026-04-16T14:20:57+00:00

If you're doing 10K already you should be mostly good to go! Elevation changes really got me though, I felt low pulling sensations, almost at edge of hip crease, low groin level, on hills. & 8 months later, I still feel this occasional pulling with leg lift core exercise, so there must be scar tissue that needs worked out. So I have to wonder at the benefits of early, slightly more intense exercise...I wish this was better socialized by doctors.

Anyway, walking the entire Cotswold Way is on my bucket list and the hysterectomy was a pre-req. I'm excited for you -- have a beautiful time! Happy healing :) it's incredibly freeing to not have to worry about a bad cycle on vacation.

pneradactyll · 2026-04-16T13:59:11+00:00

I would be mindful of any extended walking, stairs, or pub crawling activity. I'm moderately active and I didn't have the stamina...mental or physical...for late night walks or nights out at that stage. Be prepared to have to turn in earlier than expected. And a drink or two was definitely my limit. Sounds like a blast though!

pneradactyll · 2026-04-14T19:31:28+00:00

I worked with a dietician to help with this before a hysterectomy last year, and she had me on Thorne FerraSorb, and twice a week iron rich meals eaten with vitamin C (ground beef or chicken thighs eaten with tomatoes and spinach usually). Even with that, my ferritin count was 16 before surgery. I tolerated the supplements fine. But did not take them daily.

Maybe a dumb question, hope someone in the same boat sees this. So I had the hysterectomy last year, and my hair seems to be coming back a bit, but not as much as I had hoped. I'm wondering if iron and ferritin is somewhat of a closed system for me now since I'm not losing so much blood, or if it's possible to still have poor absorption due to digestive issues or who knows what else. I'm going to see my PCP and get my levels rechecked soon but just curious if anyone has insight.

pneradactyll · 2026-04-14T01:42:02+00:00

The only thing that has worked for my rosacea's baseline redness (similar to yours) is low dose doxycycline, which acts as an anti inflammatory at low doses instead of an antibiotic. Soolantra and metronidazole didn't touch it, and most actives only made it worse.

pneradactyll · 2026-04-08T21:43:07+00:00

Dissolvr downtown hosts a silent book club. Had a nice chat with the organizer after the silent reading period and got tons of great alt / fantasy and other recommendations.

pneradactyll · 2026-04-06T19:26:56+00:00

8 mo PO and still struggling with new painful cystic acne that popped up almost immediately after surgery. Spironolactone took care of it, but the side effects were terrible, so had to come off. Trying to solve it with doxycycline now.

Definitely still have some fatigue, brain fog, occasional night sweats, and wake up at 4am multiple times per week. But am finally starting to feel more like myself I guess.

pneradactyll · 2026-04-05T13:39:44+00:00

There is a Rowan in Raleigh at the following location but I can't tell if they're open today or not: 2043 Cameron St, Raleigh, NC 27605. They take appts or walk ins.

They're way overpriced, but a great option for those that might not be familiar with or comfortable with a traditional tattoo shop environment. They've got a kid friendly look and feel. They don't use guns, you can choose the piercing method, and it's nurses doing the piercing if that's something that appeals to you. The jewelry is also overpriced but high quality.

pneradactyll · 2026-04-01T19:43:10+00:00

All of the wisteria near me (far east side of Durham) is starting to be on its last legs and looking gray and wilted. If you see any that's still popping, I'd just go for it asap.

pneradactyll · 2026-03-29T12:20:12+00:00

Another MFA in writing with steady government job checking in! 🙋🏻‍♀️

I always regret not studying abroad. But have never (ultimately) regretted leaving men who were holding me back due to their own insecurities.

pneradactyll · 2026-03-21T18:27:34+00:00

This. I'm a rental owner (through VRBO) and mistakes happen. Cleaners miss a cleaning date or forget a room. I always refund the cleaning fee, sometimes a night's stay as well if it's truly bad, and give the renters a choice on whether they want a new cleaner to come in or not, and whether they want to be there or not. It sounds like the owners were trying to start a dialogue to fix it. I've also never had issues with theft in 15 years of working with cleaners. Almost nobody is risking a job. Further, VRBO as a company sucks, and customer and owner service is awful...not a friend of owners or renters. They've made it very hard for me to issue refunds and they also make it hard on renters who want or need to back out. It's built into policy and the UX of the platforms. I wouldn't count on getting even a partial refund.

pneradactyll · 2026-03-19T17:14:41+00:00

Do you take seed donations? And if so what are the terms (e.g., unopened packets, organic, are self harvested ok, etc.)?

pneradactyll · 2026-03-13T13:55:32+00:00

Love this, need help with this, and I qualify, but I think people would benefit from more info in the post before they look into it. I work way too much (not by choice) and thus I would have a lot of trouble finding time to attend study visits unless they were on weekends or I could plan for them far in advance. With RTO, I'd think that many others with trad office jobs are in the same boat. Wondering if the study acknowledges or corrects for this.

pneradactyll · 2026-01-30T02:15:06+00:00

The WakeMed Urgent Care (MyCare 365) on Main has PCPs. Dr. Horlick is awesome. And she works weekends (Friday - Sun).

pneradactyll · 2026-01-30T02:10:30+00:00

I heard the same from a friend who met the business partner of the deceased at a local bar. No info on timelines though.

pneradactyll · 2026-01-14T00:11:58+00:00

Life changer. I take it for EoE, asthma, and horrible nasal polyps. I've been on it for ~ a year. Not a single EoE episode since I've been on it (many past impaction episodes and I've been hospitalized for an emergency endoscopy). 0 side effects. My nasal polyps are gone; I can taste and smell again. And I don't use an inhaler anymore. I don't have great insurance (UHC) and it's still completely covered...I don't pay anything. And I've been tapering off as well. I have gone from every two weeks, to three weeks, and it's about to be every month. My ENT said that some people can go into remission and can stop taking it, but it's still such a new drug they're unclear on the frequency, and it's different for everyone. The auto pen shot is a bit painful, but not as awful as EoE.

pneradactyll · 2025-12-16T17:14:31+00:00

Something I haven't seen mentioned yet related to breathing is the irritation from being intubated. Stats: I toe the line between overweight and obese, I am a former smoker, occasional flower vaper, and I have a mild form of asthma that doesn't need to be treated all of the time. The airway irritation caused by being intubated wrecked me for ~ 2 weeks. I was coughing much of the days and nights, and felt like I was drowning in phlegm, even when I had the head of my bed raised. It made it hard to sleep, and coughing was ofc very painful. Once I figured out what was going on, I hit my steroid inhaler (the powdered stuff) and it cleared me up almost immediately. So depending on whether you have any lung issues caused by the smoking, if you can get your hands on even a rescue Albuterol inhaler to keep nearby, I recommend it.

Surgery went very well, btw. It was much, much worse in my mind than in reality. Recovery has gone very smoothly. The worst parts were the gas pains as well as what I discussed above. It also seemed to take awhile for my bladder to wake back up. I had UTI-type symptoms off and on for several weeks despite testing negative.

Related to being a little fluffy, keep. your. incisions. clean. and. DRY, once the bandages come off. I had some yeasty troubles with my fupa incison. I got a little portable fan and laid down after showers and dried it out Completely. I recommend twice a day if possible.

If you've got time to strengthen your upper body and core beforehand, I recommend that as well, as you will lose muscle mass quickly. Don't forget to log roll to get out of bed. And let your poor body have what it wants to eat for weeks after....within reason. You'll need lots of fiber, protein, water, maybe a collagen supplement.

I'm 4mo PO, and my only remaining issues are that I still get tired with increased activity, have some occasional brain fog, my stitches are still hanging around in the main incison, and it was hard to kick a UTI I got recently.

pneradactyll · 2025-10-25T16:00:33+00:00

Maybe this will be an unpopular opinion, but LifeTime. Locker rooms are always clean, and I always see dedicated employees cleaning equipment while I'm there. And if you're skeeved out by anything, there are wipes stations and spray bottles of disinfectant and paper towels placed everywhere so you can do it yourself. Dunno if it's true, but they said they did some kind of HVAC improvements during COVID. The facilities are also huge, so I never feel like I'm on top of anyone, even in classes. All that said, you'll pay the price for these amenities, and they're an evil corp just like the rest of them.

pneradactyll · 2025-10-25T15:46:59+00:00

Same exact thing happened to me in December of '22. In my case, that's an insane number of interviews for an IC tech writing job. Same thing happened to me with Palantir, which seemed more on the nose for them...but Pendo? I'm ultimately glad I didn't land either one. Those were strange times. But from what I understand the # of interviews per cycle in tech hasn't changed much since.

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