u/Fun_sized123

I don’t feel comfortable being out and about for more than an hour without my backpack, which has all my medical supplies/supports. I was turned away from a bar because of my bag last weekend and just now lost my bag because I was trying to carry it under my wheelchair to hide it/make it not look like a backpack at an event where the security guards at bag check yelled “if your bag has 2 straps like a backpack, you have to throw it away or leave!” I don’t know how I’m supposed to exist and take care of myself in an environment like that. I can try to tell security that it’s a medical supply bag, but sometimes when I’ve explained that I needed my water bottle for medical reasons (which I do! And I carry a doctor’s note to prove this to anyone willing to listen to me in a scenario like this) security or bouncers or whoever did not care and did not let me in with it. Maaaybe it would be different without the water bottle, but I might still have to get to the front of the line to find out, and then it’s up to the individual security guard and whether they’re in a good mood or will even let me talk to them to say “It’s my medical supplies.” Also not all my stuff looks clearly medical.

One of the important things I carry in my bag is my as-needed and evening medications in a prescription bottle, so security probably would understand that. But I also have:

*ice packs, a hand-held fan, a large water bottle, and electrolyte packets for my POTS with heat intolerance (I get that the water bottle can be a sticking point, but I’m willing to dump it out. That is not the issue here.)
*snacks because I have food sensitivities and often cannot eat the food for sale at events
*face masks, hand sanitizer, and wipes (an infection could make my chronic conditions worse, and tbh I also have contamination anxiety)
*earplugs
*pads, which I need to carry every day because I experience very unpredictable uterine bleeding due to medical issues
*sometimes a battery-powered wearable heating pad if I’m having pain that day
*tissues because my nose is always dripping
*sometimes a collapsible stool if I’m not using my wheelchair that day and anticipate that there won’t be places to sit

I don’t feel comfortable going to festivals etc. without these items, and I would need some of them still at a club or a bar. Some places have coat check, but others don’t and will straight up just send you home if you have a bag (especially a backpack, I guess maybe I could get a zippered tote bag if it would really make a difference? But I’m not confident it would).

What do I do??

Has anyone had success buying a bag that’s explicitly, visibly a medical supply bag for stuff like this or for their diabetes or pain relief supplies or whatever? Anyone have any other ideas?

Ice packs are a huge help for me, especially wearable ones and especially on strategic parts of the body for lowering core body temp, such as on my back, on the back of the neck, between the thighs, or even armpits if you don’t mind the ice packs getting a little stinky (preferably separated from the skin by fabric unless it’s a skin-safe cold pack).

My favorite for day-to-day are “neck cooling tubes”/“chill gel neck wraps” that are like horseshoe-shaped gel ice packs. They can be mostly hidden under the collar of my Hawaiian shirts.

It doesn’t have to be a product specifically designed for body cooling in hot weather, though, pain relief cooling products and ones designed for food storage also work. If you need something ASAP and don’t have time to wait for shipping, I found an item at a local CVS called “CryoMax Cold Pack“ (advertised for back pain)—it’s a big soft gel ice pack with a fabric pouch and waist strap so you can wear it around your waist to keep it against your lower back under your shirt. You can also take a regular gel cold pack and tuck it into the back waistband of your pants/shorts.

Stay safe out there ❤️

Currently need to replace my computer and I’m trying to decide between a regular non-touchscreen laptop

OR a 2-in-1 tablet laptop like the Lenovo Yoga or Microsoft Surface. The choice depends on whether I switch from paper notes and traditional art to digital notes and digital art.

I am currently a devoted on-paper-by-hand note taker, but I‘ve compiled like a trunk worth of filled paper notebooks throughout undergrad and it’s getting a little difficult to tote them around the country, so I’m considering going digital while still being able to write by hand and annotate and draw in my notes. With the right app, this also could allow me to CNTRL+F keyword search my notes, which I’d like. But I also like time away from screen, so I’m not sure I want to make the switch. I also am basically finished with my BA, except I’m going to go take a technical certificate class and may or may not go to grad school in the next 5 years, and if the device I buy survives that long, I would like it to serve me well in memorization-heavy classes.

What’s y’all’s experience with switching from paper handwriting to digital handwriting?

As someone who masks with a KN95 whenever in public indoor spaces (or crowded outdoor ones) and is considering going into healthcare or public health programming as a career, I’m wondering if I would face hostility or patronizing “oh honey, you don’t need that anymore“ from bosses and coworkers.

Also, I just don’t understand why people working in urgent and emergency care settings especially (where patients with colds, flu, pneumonia, and potentially COVID or TB are coming in every day) would choose NOT to mask *unless* there are social repercussions for wearing one or unless it impacts patient care (I can think of a couple very limited scenarios in which it might, e.g. in pediatrics or speech therapy or with a deaf patient). Like, I was just watching the Pitt (which I know of course is not real life) scene where it is revealed that one of the patients is showing signs of TB, and the student doctor seems shocked and terrified. Of course I feel bad for anyone experiencing workplace exposures, but it’s not like that’s not to be expected. Although of course the ideal solution would be for hospitals to provide adequate respirators for free to all their employees and patients and create pro-masking policies (which wouldn’t transfer well to TV, so I think it’s totally understandable for actors to be unmasked, but I’ve also seen urgent and emergency care providers IRL not wearing masks. Why?)

As someone who masks whenever in public indoor spaces (or crowded outdoor ones) and is considering going into healthcare as a career, I’m wondering if I would face hostility or patronizing “oh honey, you don’t need that anymore“ from bosses and coworkers.

Also, I just don’t understand why people working in urgent and emergency care settings especially (where patients with colds, flu, pneumonia, and potentially COVID or TB are coming in every day) would choose NOT to mask *unless* there are social repercussions for wearing one or unless it impacts patient care (I can think of a couple very limited scenarios in which it might, e.g. in pediatrics or speech therapy or with a deaf patient). Like, I was just watching the Pitt (which I know of course is not real life) scene where it is revealed that one of the patients is showing signs of TB, and the student doctor seems shocked and terrified. Of course I feel bad for anyone experiencing workplace exposures, but it’s not like that’s not to be expected. Although of course the ideal solution would be for hospitals to provide adequate respirators for free to all their employees and patients and create pro-masking policies (which wouldn’t transfer well to TV, so I think it’s understandable for actors to be unmasked, but I’ve also seen urgent and emergency care providers IRL not wearing masks. Why?)

As someone who masks whenever in public indoor spaces (or crowded outdoor ones) and is considering going into healthcare as a career, I’m wondering if I would face hostility or patronizing “oh honey, you don’t need that anymore“ from bosses and coworkers.

Also, I just don’t understand why people working in urgent and emergency care settings especially (where patients with colds, flu, pneumonia, and potentially COVID or TB are coming in every day) would choose NOT to mask *unless* there are social repercussions for wearing one or unless it impacts patient care (I can think of a couple very limited scenarios in which it might, e.g. in pediatrics or speech therapy or with a deaf patient). Like, I was just watching the Pitt (which I know of course is not real life) scene where it is revealed that one of the patients is showing signs of TB, and the student doctor seems shocked and terrified. Of course I feel bad for anyone experiencing workplace exposures, but it’s not like that’s not to be expected. Although of course the ideal solution would be for hospitals to provide adequate respirators for free to all their employees and patients and create pro-masking policies (which wouldn’t transfer well to TV, so I think it’s totally understandable for actors to be unmasked, but I’ve also seen urgent and emergency care providers IRL not wearing masks. Why?)

Has anyone had success with pro-kinetic meds for chronic constipation? I‘m wondering if I should start bugging my doctor about trying them.

Context: I’m not diagnosed with gastroparesis, but my doctors and I suspect slow lower GI motility. I’ve had chronic constipation since I was a toddler (now in my 20s) interspersed with occasional episodes of diarrhea (sometimes at the same time as constipation, probably from backing up behind it, dx’ed IBS-M) and also have POTS dysautinomia, mild EDS, and a hypertonic pelvic floor. I tried pelvic floor PT, but it is uncomfy, expensive, time-consuming, and I’m not confident it was working/will work.

I currently take 400mg magnesium oxide plus a fiber supplement, and while it helps a ton (especially the magnesium), I still have on-and-off constipation, deep rectal pain, and trapped gas.

HOWEVER, I also sometimes experience painful smooth muscle contractions in both my uterus and intestines, and antispasmodics reduce my pain (except the rectal pain), so I’m wary of anything that increases that. I’d rather be constipated than cramping. And also ducolax was painful, and I need a solution I can use long-term, which I know is not good to do with many stimulant laxatives.

Soooo basically, has anyone else been in a similar situation and tried a motility-increasing medication? How’d it go?

ETA: I should also mention that I had an upper GI stomach motility test with barium and it was totally normal. I know I should prob get lower GI motility testing, but idk if it’s worth fighting for and traveling to a special clinic for if it won’t change my treatment. I also take Adderall for excessive daytime sleepiness and an SSRI, which may mean I can’t take certain stimulant meds if the combo would give me too much dopamine or serotonin

I have POTS & co. but feel like ppl like me are over-represented on disability social media & want to hear more from other people. I listen to Andrew Gurza’s podcast, which is interesting for me because he has CP and makes disability justice connections across different condition (Also I’m an Instagram hater lol and prefer long-form content, that’s why I specify platform)

My dermatographia is usually fairly mild compared to some people here. It’s the strongest on my neck, upper chest, and top/helix of my ears, and affects a body part more the closer I get to there. Usually my skin just turns red, not burns or itches, but whenever I wear my garmin watch long-term, I get an itchy contact dermatitis rash where the band rubs against my wrist. The band is just silicone, so I don’t think I’m allergic to the specific material. My doctors and I want to try using the watch for tracking my sleep cycle.

What material (breathable woven or knit fabric/silicone/medical grade silicone/metal/etc.) has irritated your skin the least?

*Has anyone else with dermatographia managed to wear an activity tracker watch the majority of a week without itchiness?*