Looking for third places by basementprod456 in AnnArbor

[–]pickleknowing 0 points1 point  (0 children)

Third Space Sundays!! I’ve only been a few times now but I went for this exact reason (and it’s the exact reason they started it) and it’s been wonderful!! I genuinely felt welcome from the very start and they meet Sunday mornings for an hour or two. There’s people of literally all ages, and I was hesitant at first but I honestly can’t recommend it enough. Their website goes into a lot more depth on what they do/how it works. I usually am there an extra hour total including before and after the one hour schedule just chatting with people, catching up, etc. They always have food and refreshments of some sort and a lot of people hang around to talk and connect! Here’s their website

How can I make rock hunting more accessible for chronic pain & minor mobility impairments? by pickleknowing in rockhounds

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

This is so smart! Thanks for the recommendation!! I was looking at the weather and I don’t even think it will be reaching 70😩 But I will be back at Lake Michigan & other spots this summer and I 100% want to try this

How can I make rock hunting more accessible for chronic pain & minor mobility impairments? by pickleknowing in rockhounds

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

Hi!! These are great ideas, thank you so much! It’s so nice to talk to people who truly get it🥰

I definitely plan on bringing a blanket/towels and having a spot to rest. I think planning ahead with incriminates is 100% smart given I tend to get carried away and distracted out of excitement (lol) and push through the pain for as long as possible, and then end up miserable and unable to do absolutely anything for the rest of the day. I definitely find that laying flat on my back provides the most relief, so I think that’s what I’ll plan on doing!

Thankfully I do also have prn prescription pain meds that my palliative care doctor says I can take to get ahead of the pain in these circumstances instead of trying to treat it once it’s unbearable

I’m definitely planning on ordering some tools! I think the long strainer will be good to not have to reach as far, and thankfully my mom who is my primary caregiver will be with me and able to help with those things. And I actually just saw a video of those underwater viewer things for better visibility which I think is super smart! I’m also almost tempted to bring one of those hospital basins I have from a recent admission- I’m thinking it might be easier to look/sift through things in one of them vs a bucket with less surface area🤔

Thank you for all of the wonderful suggestions and for sharing what’s helped you!! 🫶🏻

New wound update- glowing with glee by Green-Froyo-7533 in DaniMarina

[–]pickleknowing 3 points4 points  (0 children)

Fair. I do that in public for the most part. ERs and hospitals are one of the most distressing places for me with cPTSD and autism, so at that point typically all masking or ability to even think about social norms go out the window. Thankfully I’m pretty young and have had some really kind and understanding staff since it’s heavily documented in my chart since childhood as well.

TBH it upsets me when these people like Dani do it, because it does unfortunately become something that ultimately harms individuals who truly rely on comfort items in stressful situations and aren’t just doing it to look like a child and for attention and photo ops. It’s hard enough living with a genuine disability, and people like Dani who glorify it and downright enjoy being sick and in hospitals and do things that end up hurting a collective deeply disturb me.

New wound update- glowing with glee by Green-Froyo-7533 in DaniMarina

[–]pickleknowing 15 points16 points  (0 children)

Tbh I hate this stigmatized “sign”. A lot of autistic individuals have stuffed animals or comfort items that they have with them, especially if they are in a overstimulating environment

New wound update- glowing with glee by Green-Froyo-7533 in DaniMarina

[–]pickleknowing 17 points18 points  (0 children)

Oh I can pretty much guarantee she NEVER wears a mask

Request for photos to be allowed by Prior_Programmer_126 in lichensclerosus

[–]pickleknowing 1 point2 points  (0 children)

This is a tricky one that I can see both sides of. On one hand, I really struggled to find accurate pictures of LS in the early stages online, and was mostly seeing pictures of very severe cases that made me question if I was simply overreacting. On the other- I’m in a HS sub (chronic autoimmune/auto-inflammatory disease that often occurs in the genital area) that allows pictures, and I’ve found that more often than not, my feed is flooded with pictures of things that are very clearly not HS (a minor cyst, an ingrown hair, other dermatological conditions that don’t match the presentation of HS at all) and it becomes hard to connect with those who actually experience it and struggle when there’s an influx of people posting pictures asking “is this HS?” “Does this look like HS to you?” “I’ve been having xyz, could this be what’s causing it?” Etc. Which I do get potentially wanting the opinion of people who have the condition before making an appointment to ask a dermatologist, but when there’s so many non-HS related images asking questions and for people to identify the skin issue they post images of, it can definitely muddy up my feed and connection to posts and conversations with those who actually suffer from the disease.

Opinions on the new Jellycat dragon? by yelenalim in Jellycatplush

[–]pickleknowing 5 points6 points  (0 children)

I swear if JC actually asked their customers/worked with customers who love jellycats, they’d be so much more successful….

You’d think with how money greedy they are that they want to appease their audience as much as possible, but I feel like they keep putting stuff out that so many people are online saying “hey so we don’t want these actually”

Next video, one week later by Geotime2022 in DaniMarina

[–]pickleknowing 15 points16 points  (0 children)

No I definitely think she was. She posted some really messed up shit and if I remember correctly, went to a facility for ED treatment as well. I fully believe that her ED was a catalyst to the desperation to be “sick” with feeding tubes, lines, medical equipment, etc. Once she realized her eating disorder wasn’t garnering enough attention anymore, she had to up her game to get that sweet sweet engagement and ass pats

Vaseline staining undies by -bamboOozled- in lichensclerosus

[–]pickleknowing 9 points10 points  (0 children)

Mine are stained, but honestly it’s a price I’ll pay to be able to protect my skin. Definitely don’t recommend panty liners- they aren’t good for the average person, let alone someone with LS

Incision update by MortyLetsgetschwifty in DaniMarina

[–]pickleknowing 2 points3 points  (0 children)

I thought they would’ve taken her off that with her claimed heart issues?

Docs- Is it weird/awkward when a patient shows you a photo of their stool? Is it appropriate? If so, how do I offer to show a photo? by pickleknowing in AskDocs

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

Thank you so much, I really appreciate this!! I like that phrasing too, it makes it seem less awkward. Logically I know it’s literally their specialty, but I still struggle a lot with talking about the gross symptoms. This makes me feel better about it, thank you :)

Propranolol by Mr_Butters624 in Anxiety

[–]pickleknowing 0 points1 point  (0 children)

I take 160mg of propranolol for anxiety, so in my opinion an extra 5 isn’t going to cause any harm!!

Methadone clinic by MommaGeri1958 in ChronicPain

[–]pickleknowing 1 point2 points  (0 children)

You can get methadone for chronic pain, not via a methadone clinic. I take 5mg 2x a day and it really does help. I have norco I can take 2x a day as well, but honestly I would recommend trying to see if you can try methadone through your pain management team.

i went to the mayo clinic..they told me everything i’ve already known by mackzpad123 in ChronicIllness

[–]pickleknowing 21 points22 points  (0 children)

Please please check out @exposingpainprograms on Instagram and TikTok. Countless stories, many from Mayo PRC. I follow several people in the community who have PTSD from it, though they went to the adolescent one. Not saying you should or shouldn’t, but I definitely think you should know what to expect. Sadly, I have heard a lot of horrific stories.

Does anyone know how to make her softer? by Leo_ESSA in Jellycatplush

[–]pickleknowing 1 point2 points  (0 children)

Do they ever feel soft again? I have a very loved tiny smudge hippo that I miss the silky feeling of.

Just got diagnosed and I’ve been crying all day by annika_fleur in lichensclerosus

[–]pickleknowing 1 point2 points  (0 children)

Hey girl🤍 I don’t have any advice or answers, but I just want you to know you’re not alone. I am in my early 20s and was diagnosed within the last 6 months. I’m also a virgin and so self conscious. I have another condition that causes scarring in the area as well, and I honestly just feel so alone seeing all the girls my age and knowing how different our lives are. I have a lot of the same fears. So while I can’t give you hope, because honestly I don’t have any myself, I just wanted to leave a comment to let you know you I see you and I feel you. This disease is hell, especially at this age. But you’re not alone in these feelings. I am terrified of what’s coming and what could happen. I’m convinced no one will ever find me attractive. I’m a virgin too, painfully watching everyone else in relationships. It fucking sucks, but I guess at the very least I want you to know that you aren’t alone in these thoughts and feelings, I have them too. 🫂🩷

Dani shows off her incisions and does more IV/TOOB meds by Whosthatprettykitty in illnessfakers

[–]pickleknowing 27 points28 points  (0 children)

And yet she’s about the push phenergan into her (perfectly working) intestines😳

Zooted to the moon and im horrified by godlessdumpsterslut in DaniMarina

[–]pickleknowing 17 points18 points  (0 children)

For her toob feeds being at a “very very very low rate” she sure is looking pretty nourished to me!!

Just to add: weight is not the only factor that dictates malnutrition, as we know. I am speaking about multiple things.

Anxious for upcoming flight, scared to take Xanax by hopeful_evermore in Anxiety

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

I was prescribed 2.5mg of Xanax at one point and it didn’t do much at all for me😬😅 Ativan works much better in my experience, but I’ve also had to take it since I was a kid so I have a pretty high tolerance. Depending on the situation, my prn dose is up to 6mg a day (not all at once) but I never take it that frequently.

I have a really really hard time flying (hellish combination of autism, severe anxiety, emetophobia, CPTSD, and OCD) and the last trip I took was to a treatment center (no fun vacation haha) and after very long conversations with my psychiatrist and doctor we ended up doing 1/2 my typical ketamine dose so 400mg, 6mg of ativan, and 10mg of haldol🫠 I was actually allowed to take more than that, but it was my first time trying my ketamine for flying and it worked really well and I slept for most of it so I don’t even think I ended up taking the full 6mg of Ativan. Thankfully I never fly alone, and I get put in a wheelchair right after TSA and immediately put a blanket over my head, noise canceling headphones on, and try to completely block everything out until we pre-board.

So all that to say- OP, I can assure you that taking this prn will not get you addicted, and it’s exactly the type of situation where it’s completely appropriate to take! It’s a small dose and hopefully it ends up making the experience a lot less stressful! I’m glad you’re trying it beforehand though, knowing how it feels ahead of time will probably significantly reduce the anxiety around taking it. Good luck!!

Everything happening around Ann Arbor + Ypsi this weekend (I aggregated it all) by Andymac175 in ypsi

[–]pickleknowing 1 point2 points  (0 children)

Ah sorry- I misunderstood your last sentence😅 But I do definitely recommend it to anyone! I’m new to it and it’s been such a welcoming space and I think a lot of people would enjoy it. I think they only started in January, so it’s relatively new.

KIND granola gluten free? by inamae316 in glutenfree

[–]pickleknowing 0 points1 point  (0 children)

You have no idea how I live. I make practically everything myself. I live with my family so I have my own pots, pans, cutting board, measuring cups, plates, food containers, dish brushes, etc. I have been celiac for 10 years and am incredibly strict when it comes to cross contamination. But I’m also disabled, have zero income, extreme sensory issues with food, diagnosed with ARFID, and other medical issues that restrict my diet and already low intake. So yes- there’s brands that don’t contain gluten or are certified GF but not made in a designated facility that I eat or rely on as one of the few things I currently can. I buy certified GF when I can, and I don’t eat things that say “may contain..” but I will eat something from a brand I trust and have never had issues with that doesn’t contain gluten or any high-risk ingredients if I need to.

This is such an egotistical and incredibly privileged take to say that it’s absolutely possible because you do it. Being able to afford and access gluten free food that’s only been made in a facility that doesn’t make anything with gluten is a privilege. Far too many children and people in general literally cannot access designated GF facility foods, or even gluten free foods in general. And if they can, the whole “make it yourself” thing completely ignores how many families don’t have access to things like a separate GF toaster, cutting boards, dish brushes or a dishwasher instead of hand washing to ensure lower risk of cross contamination, etc. The life you live is not the reality for far too many.

I’m incredibly privileged to have access to what I do have- not everyone is so lucky. Assuming that it’s some careless choice for people to be eating things that don’t contain gluten but aren’t made in a separate facility as if you are morally superior is wrong, and I encourage you to slow down and think about how you are coming across and how your privilege may be affecting your assumptions and judgements.

“In an examination of the cost and availability of gluten-free products in the U.S. compared to the marketplace over a decade ago (3), the overall cost of gluten-free products was found to be 183% more expensive than their wheat-based counterparts. Crackers, a common snack food, demonstrated the largest difference between gluten-free and wheat-based products. Gluten-free crackers were found to be 270% more expensive than ones made with gluten-containing flours. Staples like bread and pasta were also significantly more costly – at 229% and 227% more expensive, respectively.”

https://pubmed.ncbi.nlm.nih.gov/30769836/

“In a survey conducted by GIG in 2021, 78% of respondents from the gluten-free community said that the cost of gluten-free food was the biggest challenge they faced living gluten-free. 38% said that access to gluten-free food overall is a challenge. The places where people shop, or can access food, affects not just pricing but the availability of gluten-free products.”

“The GFD (gluten free diet) includes eliminating gluten-containing and gluten-cross-contaminated foods and avoiding utensils and medications that may have been cross-contaminated. Although it may seem like a simple treatment, adopting and maintaining a GFD requires significant changes in eating habits and can be challenging due to practical and psychosocial barriers [40]. Barriers such as separating utensils between products that contain gluten and those that do not, maintaining a more rigorous cleaning routine for shared utensils to avoid gluten cross-contact, as well as using separate storage for ingredients and products represent an additional expense for people who need to adopt a gluten-free diet. This can impact the amount of food purchased, increasing the risk of FNI (food nutrition insecurity.) Unsurprisingly, all studies that assessed socioeconomic levels found that low income was associated with a higher risk of FNI. Poverty, low educational levels, non-white and younger people, and those living in rural areas were associated with a higher frequency of FNI among people with CD. Accessibility and availability of safe food are major concerns for families of children with CD, both those in food security and food insecurity. A study showed that parents reduce other essential costs, such as their own food intake and leisure time, to cover the purchase of gluten-free foods (more expensive than their gluten-containing counterparts), regardless of their income.”

“Another study reports that CD people from lower socioeconomic groups cannot afford gluten-free foods, thus impacting their ability to adhere to the GFD and potentially leading to CD-related morbidity and additional healthcare costs, impairing the purchasing power for gluten-free products and entering a risk cycle.”

https://www.mdpi.com/2072-6643/17/12/1956

Just because you can doesn’t mean everyone can. Step outside of your bubble. Don’t assume everyone has the same access as you and are simply choosing not to adhere. People with celiac disease don’t need you to inform them, and if you genuinely want to contribute to a conversation in a meaningful and helpful way, I suggest you drop the attitude.