You're doing great!

Thank you 🙏😊

Thank you!

THANK YOU!!!! ❤

omg I thought Danny was a nickname or something lol I just accepted it

She must have felt so awful!

Isn't that only for opioids though? Because I'm pretty sure with anything else you can just take the whole package.

@@sophieweinrich6545 exactly!

Don't you have travellers insurance? Because as far as I know they have to pay for things such as this. Either way, 2500$ is probably a year's worth of meds here in Germany if you look at the prices for the health insurance company.

@@sophieweinrich6545 I do have travel insurance (HanseMerkur) but they funnily enough don’t cover meds. If u know u needed them and didn’t bring enough, they don’t cover that. If u loose them on vacation, they would either send u some from Germany (if they are FDA approved meds), or they find a comparable alternative in the US. But in either case, u have to wait…and for the medication, pay yourself in full. I literally only stay a month in the US and have to travel back every 30 days, to get more medication from Germany 😒, it’s a nightmare. I also have to get those meds certified at the ,,Gesundheitsamt“.

I’m not German, but I believe it may be any controlled substance that could have addictive properties. Here in the US, if you’re traveling for more than a month with a controlled substance, you usually need to submit proof to your doctor, your pharmacy, and your insurance that you’ll be oversees for long enough to justify carrying another bottle

I used to take ice cubes and wrap them in a paper towel then get the towel wet with cold water and just have that with me and press it against my head and wherever I needed it until it fully melted. (grew up in Missouri, also have EDS)

I do ice cubes in the hair too. I find a braid holds them in there best.

I also recommend having a water spray that you put in the fridge (or maybe put ice cubes in it) and then carry around so you can mist yourself with cold water. Or if you want to minimize being wet you can carry those frozen gel bags that people use for cooling injuries

I went to Houston on vacation during the summer ONCE. Never again 🫠

Taking medication is not any sort of flaw. I think people that think that way lack compassion or have not experienced pain or illness. ❤

​@@jennifers5560 ... or are in hard denial about their own aging and nearly inevitable illness/disability. (seeing as sudden de@th is the only way to avoid becoming at least somewhat disabled)

@@jennifers5560 I have chronic pain, hEDS, CFIDS/ME, adhd, and etc. and have had times where I was in a different US state and needed my 'controlled substance' refilled. Oh boy was it awful! One pharmacy refused to fill 'medication that strong for such a young person' so I had to physically go to other pharmacies until I found one who didn't judge. Zero compassion. They even called my doc to confirm, not the worst that has happened unfortunately. When I moved to a diff state, NO doctors would accept me as their primary (basic) care because I was taking a controlled subs.! It was horrible. I had to drive to my old dr every month, about 3 months later doc said this isn't going to work anymore...So now I'm off the only meds that actually enabled me to function ok and (there's more to it) but my quality of life is 20% maybe of what it used to be..and I feel like I won't be granted the meds that worked for me (for 11yrs) if I ask. I'm too weak to advocate for myself BUT recent scoliosis dx and pain increase are making me want to ask if I may try again. I'm afraid to ask! There's a stigma attached, as you probably know, and from 11yrs of attitude from pharmacists I have ptsd surrounding getting refills (same now with my adhd meds). We need advocates! SORRY FOR THE LONG REPLY! I agree with you that taking any medication that helps you is not a character flaw, and I assume @justmeonly986 feels the same. Much love & hope you're doing well

⁠​⁠​⁠​⁠​⁠@@jennifers5560 (/genuine) absolutely agree and I’ll add taking substances some governments have deemed illegal isn’t a flaw either

Yep. I don't have EDS, but I have obnoxious reactions to bug bites. They can get huge, turn maroon, or both. It was real fun as a kid because teachers would send me to the nurse to go home thinking I had some contagious disease because "I know what bug bites look like", and camp counselors and coaches would just make me sit on the side and not participate. Unfortunately my parents blamed me "for not just explaining it" and made me pay them back for whatever I missed out on. You'd think they'd have understand it wasn't my inability to explain it after my teacher tried to send me home every single day for three weeks, but no, apparently if I just told the adults they were mosquito bites the problem would be over.

I struggle with this, between my cane, and carry-on, and a drink. I can only travel comfortably if my husband travels with me. We checked a big bag we shared, and each had a "personal item". No carry-on luggage. Me: giant leather satchel that also contains my everyday purse, meds, etc. Foldable metal cane. Husband: backpack. My husband ends up carrying my satchel as well as his backpack because my shoulder gives out. With him with me I can also get a Starbucks Iced tea! Basically, make your more able-bodied partner carry your stuff when you can not, and pay the extra $35 to check a big bag. Lmao!😂 My poor husband. He's amazing.

i was always leaving half full or 1/3rd full water around & when that movie came out my best friend said to me “it makes sense now” lol

I feel so called out.

I take the lmnt electrolyte powder everyday in a protein shake (even when it's not hot) and find it's decreased migraines and helped prevent dehydration I generally drink a lot of water but sometimes if I have a long nap it messes with how much I can manage to drink

I don't think Jessica could have Liquid IV because it has sugar in it. It does taste really good though.

I have simple electrolyte powder, it has nothing but the electrolytes (including salt). You can mix it with juice or whatever instead of plain water, if you want. I find it a lot better than just salt, as it has the potassium and magnesium as well.

@@waffles3629they have a few sugar free flavors.

I’m exactly the same way. Thrive in heat, turn into an absolute mess once it gets cold.

Oh this is really interesting! My fibromyalgia definitely does not love the heat. I personally really do love summer and the heat, especially cloudy and overcast or rainy summer days because the sun in particular tends to mess me up! But yeah, nothing compares to a good warm night for me. As long as I’ve got AC and a ceiling fan I can usually relax a little bit. I’m getting better at keeping cool, but I live in Australia so it’s never easy. 😅 I once didn’t have a proper aircon for two years and it was hell!

@@nimrodgrrrl I have met so many others with Fibromyalgia who moved down to warm weather states because it helps 🌧️ and cold suck my pain gets worse and I am often stuck in bed I am in the US so the heat is definitely different

Wipes are the best. I've never had children (hopefully one day) and I travel with them because they are so useful. I think I've shared more with other people than I've used while traveling. And the back of the toilet because sometimes tp is not up to the job.

I agree, we probably have 50 glasses plus who knows how many mugs. 6 wouldn’t last us one day.

Oh my gosh, I can sympathize!! The waiting during withdrawals is horrid! Every second drags on😵‍💫😰 I'm happy that you were able to get what you needed & hope you were able to have fun!

❤

My Mum has Crohn's & she also had Ulcerative Colitis( until they had her colon removed surgically. Can't have inflammation of something of a body you have after all, she still has Crohn's though.) you have my sympathies.

Here in Japan I use the air con mostly in winter to survive the cold. You don't need hot weather to need an air con...

​@@88happiness in most of the US (don't know about other countries) ACs and heaters are separate devices, so the ACs don't produce hot air.

Yep, sometimes AC can be required even when it's not generally required for the area. I have to have AC or my migraine goes through the roof after more than a few hours over mid 70s (about 23C). I can't really afford it, but I can't afford not to.

@ABLovescrafting Did he say it in a mocking tone or why do you think that? Because sun allergy is a real thing. It’s a widely accepted diagnosis, and severe cases can be very limiting (i.e. sufferers need to constantly control and limit their sun exposure, which is not easy to do depending on location, profession etc.).

@@ramonas6453 I was young and that was his "diagnosis". Looking back now and taking in some of his other behaviour, I'm pretty sure he was just humouring me. He Definitely did not take the care and attention that you speak of above.

I had something like that [1]back when I used to go to summer camp as a kid. I recently (last year maybe) had suggested that to my parents that look into get a few of those for us( I felt like they gave me this look ' I have no idea what you're talking about.' But thinking back on it pretty sure that was my anxiety talking.) , dad looked into it and said he couldn't find them. Would you mind telling me where you got yours from? [1] minus the spray bottle.

We got ours from a store near Disney that sells souvenirs and random stuff to tourists, but I googled “personal foam fan” and a few of them came up. I’m in the US if that matters.

@@eliontheinternet3298 Okay thanks I'll try looking up personal foam fans.

As an Arizonan: Set it to run more at night (like 71-72F) so it can cool the house more when it is cooler and electricity is off-peak and keep the thermostat constant during the day at say 73-74F whether or not you are home, it is more efficient this way. Make sure all drafts are sealed. Put reflective shade film on all your windows. If you have south-facing ones, try to block them completely, with cardboard, styrofoam, mylar bubble insulation, what have you, or use that winterizing plastic seal stuff they use in cold places in winter and put up blackout curtains. Doing this to the west is also good, but at least use dark curtains or thick blinds over a west-facing window in summer. The less light that gets in, the better. Next you need fans to keep the air circulating and not getting stagnant in any one room. If it is dry out, a small humidifier in front of a fan makes a little swamp cooler for a very small space - I have had this work in a house with broken A/C in summer. An area the size of a bathroom or walk-in closet can be curtained off using tension rods and bookcases or the like (with a heat escape at the top) to make a cooling area, just leave it about once an hour so your body heat doesn't warm it too much, just go get water and a cool snack or something. Make sure your bedsheets are 100% cotton or linen. I like flannel or jersey personally for sensory reasons. They make cooling blankets designed to absorb heat and then have a fan blow it away as well, which are usually cotton on the other side. Wear cotton, linen, or silk to bed. Use only LED lights, and if you can get smart lights you can control the brightness of, that will make it even cooler in the house when they are on. Unplug anything that doesn't need to be plugged in that might generate warmth. In summer use a phone or tablet, not a desktop or laptop computer whenever possible, and when a computer is necessary, have a fan blowing their heat out of the room. If you own your place, plant trees to shade the south and or west side. I hope this helps some!