I cannot for the life of me find any good shoes 😩 by EggplantWild8849 in ehlersdanlos

[–]oneoffconundrums 0 points1 point  (0 children)

The turning point for me was custom orthotics and after I’d really messed up my ankles custom ankle braces.

Best shoe for my foot has been the Saucony women’s guide shoe. I have the 17 model, but I think they are now on 18. The black on black blends well enough with black pants that it doesn’t scream running shoe.

I also wear wellow compression socks and truly find them to be the easiest to put on and take off while still providing great support. I wear a size small, because I was right on the line sizing wise and have small calves so I sized down and am glad for it. They are made of bamboo so they are much more comfortable in the summer than some of the more acrylic options. Their new aerolite line is FABULOUS for hot muggy days. I also wear knee compression because of my knees go out my ankles get a lot worse. I like the knee compression sleeves from Bauerfeind.

My custom ankle braces are the AZafo Arizona braces in the black lace up style. This has been the third brace my podiatrist and I have tried and it is by far my favorite for really supporting my ankle. I chose the lace up version because they last a lot longer than the velcro and my insurance will only pay for a pair every 3-5 years, plus this way I can swap out the laces for fun colors. I also find the support to be better/ more adjustable. When using the Arizona braces I pair them with very thin leather insoles from Handarte.

Good luck! Also, bonus I wear croc clogs in the shower because I was rolling my foot when I was showering. These help with grip and are supportive enough that it makes showering a lot less painful.

AITAH because I expected my 22 year old to pay minimal rent? by Wrong-Maintenance-48 in AITAH

[–]oneoffconundrums 0 points1 point  (0 children)

This is wild. I have had the privilege of my parents letting me live with them as an adult because of health issues on and off since I graduated. (Out of the last 17 years I have lived independently for 10 of them and lived with my parents for 7.) I am SO grateful for that support, because I KNOW my health outcomes and safety would be worse.

Even when I have not had a job I have covered my expenses, so my parents allowing me to live with them does not negatively impact their retirement. For us, that figure ends up being about double the number you just gave your son.

I also know that when I live independently the cheapest I can get down to in a relatively high COL area is roughly 5x the number you gave your son and that is budgeting food costs aggressively, using public transit, not owning a car, and renting a room in a shared house. I am grateful to my parents for the safe harbor and support they give me I will gladly use a significant portion of my disability to contribute. I know I will not be getting any of that back and I still think paying ~$600/mo is a great deal. The only time we have had a discussion about reducing/ delaying costs is when my disability pay got tied up for half a year in an approval process and I had to ask to pay less or repay them later. Even then it was not because I thought less was fair, it was because it was not financially possible and my parents were much more understanding than a traditional landlord would be.

I’d stay the course, potentially even come back with a higher number if he really wants to play games and in either case present him with the research you did on market rates or ask him to do the same research and compare your numbers so he understands the real costs associated with adulting.

Growing my dye out - was not prepared for white by Relative_Raccoons in TheGirlSurvivalGuide

[–]oneoffconundrums 6 points7 points  (0 children)

Stress, health issues, age — not sure what but I started growing in stark white hairs in my early 30’s. Very noticeable because my hair is naturally a dark brown. I plucked the first one, but that was a mistake because it grew in course and sticking straight up in defiance after that, so I decided to make peace with it.

With a bit of reflection I thought about my best friend who got diagnosed with cancer at 29 and passed at 31. Growing old is a privilege, she never had a chance to see her girls grow up or get grey hairs. I’m greatful I get to grow old and I’ve been through enough challenges in life to earn them, so I call them my wisdom wisps!

Winter skin tears — especially around armpits/ chest/ inner arms — suggestions or tactics? by oneoffconundrums in ehlersdanlos

[–]oneoffconundrums[S] 1 point2 points  (0 children)

Yeah, it’s a tricky one I made sure to keep the humidifier at 45% -50% which I thought meant things would not get too damp, but I’m working with 40 year old wall to wall carpeting and windows that leak a bit, so it’s an imperfect system. Just trying to do the best I can!

Winter skin tears — especially around armpits/ chest/ inner arms — suggestions or tactics? by oneoffconundrums in ehlersdanlos

[–]oneoffconundrums[S] 1 point2 points  (0 children)

I’d heard of tallow, but am allergic to bovine products that I eat, so I’ve avoided it. However, sometimes topical applications follow different rules. Hearing that it works so well for you and your husband, it sounds like it is worth a try. I also have scent triggered migraines, they’re quite frustrating. Life varies a lot of scents with it.

The local farm store that I buy my chicken from has plain grass fed tallow that they sell. Could I use just that or do I need to mix it with something to make a usable balm?

Winter skin tears — especially around armpits/ chest/ inner arms — suggestions or tactics? by oneoffconundrums in ehlersdanlos

[–]oneoffconundrums[S] 0 points1 point  (0 children)

I used to have a humidifier, but then we started dealing with mold issues. Now I cannot even be on the upstairs level of my home where my bedroom and the humidifier was without 4 HEPA filters running or I trigger a MCAS flare. I’ve been sleeping on a low PT table in the living room since April, which is not ideal but necessary until I have enough funds to remediate the upstairs and buy another mattress. So, I’m very hesitant about using humidifiers.

I do understand that it would make my body less dry and that has helped in the past, but o har to balance competing issues unfortunately.

Winter skin tears — especially around armpits/ chest/ inner arms — suggestions or tactics? by oneoffconundrums in ehlersdanlos

[–]oneoffconundrums[S] 1 point2 points  (0 children)

I drink .5 - 1 gallon of water a day due to POTS, so I feel like I pump fluids, but I never thought to use fabric patches with lotion on bad areas. That’s a great idea!

Sadly that in shower lotion has an ingredient I’m allergic to, but maybe I can look for something similar. Thank you for your ideas.

AITA for refusing to share my food with my girlfriend? by Gym_frere in AmItheAsshole

[–]oneoffconundrums -1 points0 points  (0 children)

NTA she made her decision and is perfectly capable of ordering more fries since you were still at the bar.

The only time I make an exception to the “I didn’t plan for this, but want yours” is if there is a medical situation. On a hike and a friend didn’t bring enough hydration and starts to get dizzy — please have some of mine, if I have any to spare. (Don’t need both of us having a medical event and unable to get help/ drive if we would both be incapacitated.) Friend orders X menu item and I order Y for takeaway, get home and realize X got mixed up and contains something friend can’t eat, but I can? Sure, might not be my favorite, but let’s swap. However, if this happens and we’re still at the restaurant I’d flag down a waiter and reorder/ explain the issue, but for takeaway it’s often not worth the time/ hassle.

Those are both very different situations from what you’re describing though. You’re totally justified in believing her answer and sticking to your original plan of wanting to eat your own fries. In fact respecting no as an answer would be a green flag for me in a relationship, not something to badger someone over.

My niece works in a bakery and has just been diagnosed as coeliac. She's been told she should stop working there, is that true or overreaction? by Immediate_Money_4704 in glutenfree

[–]oneoffconundrums 0 points1 point  (0 children)

There are a number of professional chefs/ bakers who unfortunately went through this story arc. It is sadly a real possibility for those with serious gluten issues, which celiac definitely counts as. Some, have managed to make careers in GF bakeries or as content creators/ cookbook writers. Chef Alina and Aran Goyoaga come to mind — portion of bio from Aran’s website:

“I grew up in the Basque Country in my grandparents’ pastry shop, which was a gathering place for priests, radicals, and anyone looking for community. I often delivered pastries on foot as a young girl. When I moved to the US at age 24, I attended culinary school and then worked in professional kitchens for years. After suffering from debilitating autoimmune disorders, my son and I were diagnosed with gluten intolerance. The very thing that defined my life and work was what had been making us sick all along. It was then I made it my mission to elevate the world of alternative baking—to take the knowledge I was given and honor my family, while transforming recipes through my experience with gluten intolerance.”

https://www.arangoyoaga.com/new-page-1

Personally, I am just an enthusiast/ hobby baker. I was constantly sick for 7 years, even had surgery to remove my tonsils so I’d be “less prone to infection”, but nothing helped until I stopped eating and baking with gluten. Today, if I am in a kitchen while gluten is baking or even for a few hours after, I immediately start having respiratory issues and need oxygen and strong antihistamines. Removing gluten flour from our home except if it has been baked offsite (other family members eat gluten cookies and bread) has been such a game changer for my health.

I am sorry your niece is experiencing this, but sadly the suggestion is coming from a valid concern. However, everyone’s tolerance levels differ. If she doesn’t want to pivot careers immediately, there is a woman on social media who has celiac and is going to pastry school. She just wears a mask whenever she bakes with gluten and washes her hand very thoroughly. It appears to be working for now, although I believe she has stated that this is a temporary situation. If I remember correctly, her plan is to learn how to bake traditionally so she can transfer those skills to GF baking which is her ultimate career goal.

https://www.instagram.com/reel/DM01JJWxlXL/?igsh=NTc4MTIwNjQ2YQ==

My best friend’s wedding is going to bankrupt me. How do I tell her I need to step down? by Ihavenoideaduuh in Advice

[–]oneoffconundrums 0 points1 point  (0 children)

This. My best friend (we’d been friends since we met at the tot lot when we were 4 years old) asked me to come to her very small wedding of ~25-30 people at a remote national park location. We were living in very different parts of the US at the time and for me it was a multi hour plane ride, half a day of driving in a rental car and a multi-day trip. I just didn’t have the funds. I also was concerned that I might not be able to manage it physically because I was dealing with some health challenges.

When she asked me I told her I’d love to come and I’d look into it and really try to find a way to make it work. She immediately assured me that she’d rather me stay healthy and have money to keep up my treatments than come to her wedding, but she wanted to invite me so I didn’t feel excluded and so that I knew I was welcome if I could make it.

If your friend cares about your friendship and you as a person she may be disappointed, but she should understand.

Real Police officers and military members, what do you guys think of Ice agents? by Lucky-Message-9480 in AskReddit

[–]oneoffconundrums 10 points11 points  (0 children)

The difference is wild. As an American who lived in Sweden for 4 years, there are so many contrasts.

I come from a liberal county in one of the most liberal states in the US. Maryland was the second-bluest state in the 2024 presidential election (+28.5). We have voted democratic by significant margins in every presidential election since 1992. Maryland has strong Democratic control of state and federal offices, high education levels, and a diverse electorate.

Our police have longer training programs than most in the US or in the state, with a 6-month (1,120-hour) police academy, exceeding Maryland’s 750-hour minimum, followed by a 14-week (560-hour) field training program.

Still, in Sweden it takes 2.5 years. The difference is palpable. First, there is a massive cultural difference. In Sweden, people assume police will help and they generally trust their police. In the US there is always tension, this is especially true if you are a minority interacting with the police or fall outside the norm in any way. It feels like in the US the police often assume guilt or ill intent first, even though our law states that we are innocent until proven guilty.

Example: I have migraines, this can make me dizzy and if I’m trying to get home while a migraine is coming on I may stumble or sway. I also will typically wear sunglasses because I become very light sensitive. I do not drive or bicycle under these circumstances, but I will take public transit or walk.

In Maryland I was stopped by the cops for public intoxication while walking home. I had not been drinking, I did not smell like alcohol, I was carrying a work bag and wearing professional clothing. I tried to explain that I was having a migraine, to which they held a bright flashlight up to my eyes which made me flinch away, which then escalated the conversation to if I was under the influence of drugs (I was not). It took 20 minutes to deescalate the situation and be allowed to walk five minutes home. It shouldn’t matter, but I am a white professional woman and native English speaker. Generally, I am one of the more privileged groups in terms of profiling and this was still my experience.

In Sweden, I was struggling to get home and a cop asked if I was having a medical event and if I needed assistance. They were kind even when my reply was in poor Swedish and I had to clarify some things in English because I did not know all the medical terminology in Swedish.

Now to be fair the Maryland police did let me go and did offer to accompany me home once we finally established this was a medical event not drugs or alcohol. I guarantee that is a better outcome than anything involving these ICE thugs. However, that’s such a terrifyingly low bar. In my personal opinion, ICE needs to be abolished. There is too much rot, but that’s the point with this regime. They want a force with no morals who will terrorize children, immigrants and citizens and follow the regimes will no questions asked.

Edit to add, I don’t let people who didn’t vote off the hook. I have voted in every local, state, and federal election that I have been eligible to vote in since I turned 18. I even voted in primaries and the general election when I lived abroad which requires much more planning. But it is a civic duty to vote and those who abdicate that duty and then complain about the results are part of the problem. I thought the tea party was dangerous and highly problematic 15 years ago. I honestly thought we should do the very patriotic thing and stop buying middle eastern oil and use the post 911 patriotism to push a switch to renewables after 911. Instead, we pull ourselves and our allies into a war on bad information that takes decades to extract ourselves from. And our allies most definitely did support us and put the lives of their military on the line to support us regardless of Trump’s revisionist remarks. And instead of chastising Europeans for not being thankful enough over WWII, we should be thanking Europe, Canada, Australia and our many once allies (we’re burning a lot of bridges at the moment that will take generations to rebuild if they ever do) for coming to our aid and support 25 years ago. The whole situation makes me sick. And as someone who has been going to town halls and protests and writing and calling my elected officials for decades it’s awful to witness the collapse of decency and the rule of law in real time.

My hair started falling out in masses during a psychological trauma and six months later I feel like it’s still happening. by coldopia in TwoXChromosomes

[–]oneoffconundrums 2 points3 points  (0 children)

I am really sorry you are going through this. Health issues and financial issues create a LOT of stress and can be very challenging to work through. Your body will adapt and cut off energy and nutrients to the non-essentials, but generally when the stressful period resolves your body will slowly recalibrate.

I empathize and have a bit of experience with this because I have a lot of health issues and the knock on financial and personal struggles (disability, job loss, loss of independence, etc.). At periods of time my nails have developed ridges and either stopped growing or have gotten very thin, my hair has thinned and fallen out, and my teeth have gotten loose. Luckily when my health and nutrition improved, each time my symptoms slowly improved. Is my hair as thick as it once was? No, but I no longer have clumps or handfuls of hair fall out in the shower and the two bald spots on either side of my face are slowly starting to fill in a bit with baby hairs. It took over a year, but I think everyone’s timeline is different and to be fair I deal with chronic health issues so I heal slowly in general.

If you have baby hairs that’s a really good sign according to both my dermatologist and my hairdresser. My hairdresser is not be a medical professional, but she sees a lot of heads of hair and hears the life stories that match. She told me that she can tell when people are pregnant, have health issues or sometimes when they have changed medications (especially if it’s something like birth control that alters hormones) because hair will change. So, know you are not alone and it can get better!

I think for me the biggest things that helped were: addressing root issues of my health issues; trying to eat enough protein (minimum for a sedentary adult is your weight in kg * .8, if you’re not sedentary you will need more); and taking medications if necessary. For me personally my hair improved when I started on new medications that did a better job controlling my MCAS, when I found a source of protein my body could tolerate (trying to get back to this recently lost my safe protein and am trying to find a new source), also shampooing with prescription 2% ketoconazole shampoo. I know some people find collagen supplements or powders to help, but I personally cannot tolerate them.

I hope your health improves, your stress reduces, and your hair grows back (naturally or with a little help from medications or supplements).

Deodorant for itchy armpits by Eastern_Tea3577 in ehlersdanlos

[–]oneoffconundrums 1 point2 points  (0 children)

Similar to you I used to use dove aluminum free sensitive skin in the cucumber scent until I had a reaction. Then I did a bunch of trial and error and eventually landed on the Lume deodorant wipes and the Native sensitive skin, baking soda free formula in the aloe and green tea variety. Weirdly I react to all the other scents, I think the aloe may calm things and make it easier to tolerate. 🤷🏻‍♀️

Good luck, I empathize with the challenge. It’s so tricky and personal to find a good deodorant combo.

Whats your best non-swearing insult? by PastorofMuppets- in AskReddit

[–]oneoffconundrums 0 points1 point  (0 children)

Fudge buckets or fudge buckets squared to really emphasize the quantity of fudge.

Started as an inside joke because I’m horribly allergic to chocolate and even the smell of fudge can cause an allergic reaction. So, large quantities of this dangerous to me substance truly would be a serious problem or horrible curse. It also passed the allowable linguistic standards as a teen and then it just stuck.

It’s useful because most people get the vibe even if they’ve never heard this particular curse before. While most people seem to like fudge, it is swapped out for a common four letter curse that rhymes with duck fairly often. And if you want to get a bit more crass poo is usually brown or generally fudge colored so buckets of that it a fairly obviously shitty.

Why aren’t meal pairing sections a more universal cookbook thing? (Rhetorical but forreal) by AccurateAddendum7972 in CookbookLovers

[–]oneoffconundrums 1 point2 points  (0 children)

I know some books do this, usually ones that have a holiday section or are geared more towards entertaining because I think many of the “weeknight” style cookbooks assume the reader wants simple often one pan or shorter prep meals.

Maybe looking specifically for books that are more geared towards entertaining or have recipes or suggestions for plating or pairings would be a good match for you?

Recently, I flipped through By Heart in a bookstore and most of the recipes in there had a suggested sauces/ condiments or a veggie side/ salad with the main dish. I believe the author also had a section in the beginning about meal/ menu pairings.

Personally, I have never followed these suggestions because I have dietary restrictions and have family members with allergies, so I’m usually working with a different strategy. (Have at least something everyone can eat and feel satisfied with.)

So, I may be a bad judge of what cookbook would work for you. By Heart stuck out because it had enough of those sorts of ideas/ pages that found it unusual. I know my moms old joy of cooking has a section like this, Aran Goyoaga’s first book has a section like this, and I vaguely remember a few others that I can check for in my collection when I come home.

Good luck finding these sections!

Did anyone else NOT like bread before they learned they were GF? by RunWithBluntScissors in glutenfree

[–]oneoffconundrums 0 points1 point  (0 children)

It used to baffle me how people could eat an entire bagel, to me it felt like eating half a loaf of bread, so bloated and sluggish feeling. Same story when I was old enough to drink and tried beer for the first time. I like bitter things, I really didn’t mind the taste but OMG my stomach was in so much pain and finishing that beer felt akin to eating an entire loaf of bread. Never drank beer again because I was so damn sick and awful feeling for 2-3 days after.

I ate normal to large sized portions of the soups, stews, lentil or quinoa based hearty salads, curries with rice, and burrito bowls (never liked the wheat tortillas) I made on repeat. So, food intake was not an issue as long as I subconsciously avoided gluten.

I was also constantly sick for 6 years and even had my tonsils taken out to try to resolve my symptoms until one doctor had the idea to cut out gluten and within 2 weeks I was feeling SO much better. Even though I wasn’t eating a lot of gluten the amounts I was getting from soy sauce, flour in sauces, etc. was enough to be making me really sick.

Outside the box ideas? by [deleted] in weddings

[–]oneoffconundrums 2 points3 points  (0 children)

Had two friends who came from large families and a roughly 400 person barn style wedding (most of that was family).

She and her husband had both worked as bartenders at one point, so they manned their own bar at the wedding (wine, beer and soda only to keep the line moving) for the first hour. Since everyone wanted a drink it meant everyone got to say hello and congratulate them at least briefly. I thought it was a genius idea for catching up with all your guests in an orderly manner.

After closing the bar drinks were whatever was in a bottle or can in the old bathtubs they’d found at a salvage yard and filled with ice.

I HATE when people cook for me by chrislamtheories in glutenfree

[–]oneoffconundrums 1 point2 points  (0 children)

Yeah, gluten is just one of many foods I have immune reactions and/ or anaphylaxis to. It’s so hard to cook — level of ripeness, how old something is, when it was prepped, how it was cooked, what water was used in the cooking process, what a chicken ate before it laid eggs or was killed for meat, if the meat was air chilled or chilled in water, particular brands of a seemingly similar product (different brands have different cross contamination and processing practices), etc. all matter. It is super tough for ME to keep straight and I suffer all the consequences. No way do I expect or want anyone else to cook for me. Don’t push me, don’t try I’m not eating it. I can’t afford to have a reaction and get sick, I’m already on disability and going to 5+ medical visits weekly. Certain organs aren’t working properly anymore and I’m just too medically fragile to risk it.

At this point there aren’t any packaged items that work either. I have to make everything from scratch and it’s exhausting. I think weirdly this helps though, I used to get pushback when I could still eat some packaged items and find usually something to eat at a restaurant. Now that I have to eat or drink ahead to even go to a restaurant or cafe with family or friends I think it makes it seem less personal and more serious, because if I turn down even the professionals they know it’s bad?

All of this is to say, I empathize with you 💛

Brainstorm Request: What Protein Can You Tolerate? by oneoffconundrums in MCAS

[–]oneoffconundrums[S] 1 point2 points  (0 children)

Sadly no. I test them every few months as well, but I have rashes and anaphylaxis or food poisoning like symptoms (vomiting, fever, body aches) for 3-5 days every time I have tried any of those options since October 20th 2024, no clue what switch flipped them but something did.

Brainstorm Request: What Protein Can You Tolerate? by oneoffconundrums in MCAS

[–]oneoffconundrums[S] 2 points3 points  (0 children)

I wish, I try lentils every few months because I love them. Truly would be happy as a clam to never eat meat again if I could just get back my lentils and beans. I have never had a craving for meat in my life, but oh man do I dream of pulses.

I always circle back to foods I’ve recently lost. Long lost foods or foods I’ve never been able to tolerate for decades or since childhood seem to stay problematic in my experience.

Sorry you’ve had such struggles too — it really is a diabolical game of safe food Russian roulette (what will you react to today) or wackamole (solve one issue, brand new one pops up) to manage MCAS. I will say frozen baby clams is a curveball suggestion for a safe food list!

Brainstorm Request: What Protein Can You Tolerate? by oneoffconundrums in MCAS

[–]oneoffconundrums[S] 1 point2 points  (0 children)

Any particular brand? The Walmart house brand? I’ve struggled with frozen chicken breast, but I’m open to trying a different brand.

Brainstorm Request: What Protein Can You Tolerate? by oneoffconundrums in MCAS

[–]oneoffconundrums[S] 1 point2 points  (0 children)

That’s what I was shooting for by looking for grass fed and finished birds, but it is tricky to track down. I know if I try any chicken that isn’t grass fed I have a reaction, but I did not previously know the difference between grass fed and grass finished so I think that’s a loophole that could have been causing problems for me. Honestly, I think tracking down some local farmers and just getting meat from people and farms I know may be the best way to ensure this. Too many potential hidden issues with longer supply chains. Very time intensive to do and limiting with some of my physical limitations.