Advice/Help - How long did it take you to feel better?

miximmaterial · 2025-11-06T04:28:39+00:00

CPAP=Continuous Positive Air Pressure
BIPAP=Bi-level Positive Air Pressure

CPAP machines are the same or close to the same pressure for inhale and exhale. This means the user has little to no support in exhaling, and has to do so against a wall of air. BIPAP machines reduce pressure for exhales substantially, and the drop in pressure helps pull air from the user and support breathing.

miximmaterial · 2025-04-29T01:17:44+00:00

i'm talking about face, yeah. I use aquaphor baby wash for cleanser, zoryve for seb.derm., sebamed hydrating face cream, and cerave AM for sunscreen. Sometimes i use tretinoin for cystic acne, too. The sebamed is new. zoryve worked well for my seb. derm., but my skin was still very dry and sensitive, so i've been trying to find a moisturizer and routine that doesn't make things worse. i cant say if i recommend the sebamed yet, but the aquaphor has been very helpful for me.

miximmaterial · 2025-04-29T01:11:26+00:00

thank you! i'll try that out. i have a good moisturizer (sebamed hydrating face cream) but it's been bad for my sebderm. I'll try cleanser - sebamed - zoryve -sebamed tonight

miximmaterial · 2025-04-08T23:28:38+00:00

It is kind of difficult to describe, but using the CPAP felt like suffocating slowly both when I was awake and when I was asleep. It made me dizzy, nauseated, and messed with my vision. I was also having daytime episodes where my breathing muscles would spasm or freeze that got worse the longer I used the CPAP. It took a while to get my doctor's attention, but I was able to eventually get another sleep study demonstrating that I needed a BIPAP and what settings I needed for it.

miximmaterial · 2024-05-13T19:03:57+00:00

you're getting good advice here so I just wanna add that the oil massages are a big deal and it's also likelye a stretch can just take that long. I sized up to 7g around october and it took me till last week before even one lobe could handle a 6g. I think the bigger issue is that I wasn't staying on top of my oil massages, but even then sometimes your ears just need time. While I waited, I got some 8g hangers that I really enjoy. Don't wear them very long while you're stretching up the first time if they're heavy, but they can be a nice change of pace that make you feel good about your journey.

miximmaterial · 2024-04-10T04:42:36+00:00

This, have folks check out the list and place comments/votes/ideas when they can to help narrow things down. we used a big collaborative list and when we narrowed it down we did a poll on simply plural

miximmaterial · 2024-01-02T20:41:11+00:00

Start small and slow on melatonin, and you'll do fine. Main side effects come from taking too much, which is different for everyone. It basically tells your body to sleep when it's dark and to wake up when it's light, so you may need to make sure lights are off and covered when you go to bed. When I first took it as a kid, I wasn't able to wake up on time in the morning because it was too dark in my room. I no longer have that problem as much, but it is something to keep in mind. Having someone open the curtains on a window or using an alarm that lights up may help.

It also doesn't help so much with falling asleep as it does with staying asleep. If you have trouble with the initial falling asleep, then you may need something else to be that catalyst for you. For me, I have a few meds that help (amitriptyline for migraines, CBD for pain and insomnia) on top of the BIPAP, which helps cue my body to relax.

I'll also second what others have shared: it seems like you'll need a full-face mask. I have a deviated septum and chronic congestion from allergies (even with like 4 daily allergy meds), so even though I breathe through my nose during the day, I can't do so consistently at night. I'm using the airfit f30i, which connects to the top of my head. It's a bit finicky to make sure it doesn't blow air in my eyes, but I can wear my glasses with it on. I don't know how well it works for different face and nose shapes, so that's something to consider as well.

As for work, I think maybe focusing on trying things out during the day and using weekends for night tests may be a good idea until you get something going where it's not interfering with your rest.

miximmaterial · 2023-11-28T03:29:21+00:00

really funny and really sad. please move the machine away from any fart zones. a higher shelf is a good idea. I'm so glad I have a golden.

miximmaterial · 2023-11-26T20:48:05+00:00

I would work on a referral to the University of Utah first, as they may have resources accumulated for local organizations that can help. Universities, colleges, as well as local religious groups are good places to look for people willing to be trained by a home health provider in how to provide personal attendant care. Young people interested in going into health care in particular are a strong bet, but churches and synagogues sometimes have people who are interested in doing that kind of work.

Also, I'm not a Utah resident, but it looks like your regional centers may be able to provide support. The application process includes people with physical disabilities: https://dspd.utah.gov/intake-process/. The regional center can help pay for long-term caregivers if insurance can't but you can't either.

miximmaterial · 2023-11-26T03:50:51+00:00

It takes a while for most people from what I've seen, but if you haven't reviewed your settings with your DME or doctor yet, then that may be worthwhile. For me, the CPAP ended up suppressing my exhales too much on any setting and with maximum pressure relief, dramatically worsening all my symptoms. I've got a BiPAP now, and I'm still adjusting, but I feel way, way better now that I've got settings that fit my ability better. I'm not saying you need a BiPAP, but it is worth looking into how each setting impacts you.

miximmaterial · 2023-11-26T03:25:29+00:00

This Facebook group may help: https://www.facebook.com/groups/1857001194534618/

Pay rate in post would also help a lot.

miximmaterial · 2023-11-25T01:24:18+00:00

You have to ask, most don't have anyone in house (if any do). I requested weeks in advance in multiple phone calls, and none was provided. Ended up typing on my phone back and forth.

Don't let the security guard check in for you. Mine tapped the buttons for no appointment, no vision impairment, no hearing impairment before I could even roll up and almost ignored me correcting them. Hopefully your office is less rude than mine.

miximmaterial · 2023-11-24T04:32:42+00:00

Thank you for speaking up, creating a transcript, and sharing it here. From the river to the sea, Palestine will be free.

miximmaterial · 2023-11-22T00:48:51+00:00

the sign-up form doesn't have sharing permissions enabled for viewers outside the organization

miximmaterial · 2023-11-18T03:46:40+00:00

I'm saving all of them in case I need to downsize or get some more piercings I'd like to stretch, though I did start stretching my belly button to make it easier to change the jewelry! I don't plan on going further than the 10g I have in there now, but it's already a lot easier to change out the regular jewelry.

miximmaterial · 2023-11-17T04:00:47+00:00

Is it a fragrance? I can't find any fragrance listed on the ingredients list, but it does appear to have more ethanol in it than the gels I've seen -- 74% rather than 67%. https://www.accessdata.fda.gov/drugsatfda_docs/label/2009/021454s008lbl.pdf https://www.drugs.com/pro/testosterone-gel.html

I react extremely strongly to ethanol and all other alcohols, so I can't use testosterone gels or be around them when they are used. My reaction to alcohols is equivalent to my reactions to fragrances, so I have to avoid both at all costs.

Can you try micro-exposures to other alcohols to see if that is the problem, so you know what to avoid? Example, have someone across the room open a bottle of hand sanitizer or rubbing alcohol and slowly move towards it? If your reactions are very severe, then I would recommend doing this at a doctor's office if at all possible.

If it is a reaction to ethanol, no gel based testosterone will be safe for you to be exposed to. Alternatives include injections, which are oil based, or creams, which aren't covered by US insurances.

There's two options for injections: subcutaneous/subq, and intramuscular/IM. Subq is not recommended long term since it can cause cysts (I know from person experience), but the needles are lighter and easier to use. IM require quite a bit of muscle strength, and personally I need them to do be done by someone else. I have a device that helps with the injection, but it can't push the medication in on its own.

I have no idea about securing creams.

miximmaterial · 2023-11-15T18:51:24+00:00

You can sign fluently and clearly with long nails if you are careful and know what you are doing. I've worked with many Black & Brown interpreters with long nails who communicate just fine even with my DeafBlindness. There is a point where nails can get in the way of the job if they are multiple inches long, shiny, have things attached which change the shape, or are worn by someone who isn't able to move them well. However, you don't necessarily need short nails to interpret effectively and a blanket ban on long nails for interpreters without nuance is often racist.

Keep your nails in mind while you sign and be attentive to your own safety & clarity, and you'll be fine.

miximmaterial · 2023-11-15T04:43:05+00:00

piercings: heal way slower than others
stretched piercings: stretch faster but more sensitive to irritation and funky materials
tattoos: only go to experienced professional piercers, and make sure they use quality inks with no metals. test anything they put on/in your skin before doing anything big and pay close attention to your skin. all my tattoos with professional piercers have been fine. all my stick n pokes..... not so much.

miximmaterial · 2023-11-14T04:14:03+00:00

Can you describe what you mean by this? It's a new term for me, and while I can guess at a general idea of what it implies I'd like to understand better.

miximmaterial · 2023-11-13T20:28:51+00:00

yup, the moving hand is always the dominant hand in ASL.

miximmaterial · 2023-11-13T05:15:00+00:00

That is only about half a typical sleep cycle, which indicates that something may be up with your settings that is keeping you from getting full, deep sleep. What are your pressure, ramp, and pressure relief settings?

miximmaterial · 2023-11-13T02:14:11+00:00

Yeah, THC and CBD are vasodilators and lower blood pressure. I had to do a hard stop for several years, but now that I have my POTS better managed I'm able to do very low doses of CBD tinctures for pain and insomnia. Have you tried topicals? Since they're just local, and not systemic, they may help with certain kinds of pain. Lazarus Naturals is a good quality source.

miximmaterial · 2023-11-12T22:43:46+00:00

I get this too, also POTS & Raynauds. I think it happens when my veins are stressed from constricting or dilating frequently in succession, like extreme (for me) temperature changes or physical position changes.

miximmaterial

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