Disability support chat room discussion idea

I have PoTS and hEDS. What makes me me is that I love helping others and gymnastics.

@SystemOfWolves, I also have POTS and hEDS and love helping others! I think sometimes that having a disability lets me see people in a different view and have compassion towards them.

@DonaldK,

I have POTS, hEDS, ASD, SFN(neuropathy), and HNPP(neuropathy)

I'm glad everybody is responding but I would rather do this in there disability support chat room. Is there a time that would fit with any of the mods. I would like to have a chat about this I mean it's good to have it in the form to but I would like to have a chat room discussion.❤️ I love everybody interacting though.😊

@DonaldK. I am interested in attending a disability chat or discussion.

@DonaldK

I have spinal stenosis of the cervical spine, a tibio-calcaneal fusion of the right ankle, compression fractures from T-11 to L-1, MTHFR, and osteoarthritis. The fact I can run circles around newbies 40 years younger than me is proof enough that I try my best not to let my disability interfere in my daily activities.

@xandia I am so glad to hear that even with all these difficulties you find that the ability overcome turnover come daily struggles. I am so proud of you!

@xandia Wow. I'm so sorry that you are experiencing all of that but it's awesome that you are still living life the best you can! We would love for you to join our group chat

Would you be able to hang out today? 2pm EST

There will be a pop-up chat room discussion tomorrow. This is not scheduled but if you need to know the time I'm planning on 6 PM I will let you know if it changes. @AffyAvo so I can get to know everybody do you have the ability to label the room if need be? Topic will be lighthearted discussion. Over the next six weeks I will be in the Academy under group support development wish me luck. I will have to run pop-up discussions I believe two times a week I have to re-look at the information but I don't believe it can be my community I think I have to do it for listeners but I wanna practice tomorrow. Treat this like a pop quiz for me if you would it will help me to brush up on my discussion skills as I haven't done it in so long. @wonderfulRainbow817 said I can do one tomorrow.

@777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @OneErased @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @sabeyesofblue3535 @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @SystemOfWolves @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @WeedyGarden @wonderfulRainbow817 @xandia @Xisle @Zed786

@DonaldK I do not have banner access. The community mods can help with that. It looks like Willow will be on at that time

@DonaldK

I will try to be there if I can :) I am awful with time conversations as I live in australia, so here's time is so different to cups time :)

@emotionalTalker2260 do you need a time converter?

@DonaldK

A time converter would be nice thank you 😊

@emotionalTalker2260. Hi I just saw one call worldtimeserver.com. There are other if you google time converter.

@adventurousBranch3786

Thank you so much for sharing this Branch 😊💖

@adventurousBranch3786. Another one is World time buddy

@emotionalTalker2260 We would love to see you there. 2pm EST

@DonaldK

I read it too late to join

@K87 that's OK there will definitely be others

How are you doing today?

@DonaldK

My pain is out of control, my neck got stuck in one position earlier, thankfully my husband was able to sort of squeeze/massage/manipulate it back into place (it's not uncommon so he's figured out how to do something which he can't even explain to help me regain more control. Last week I tripped and fell twice within a span of 2 hours, the first time I hit my head on a pole and the second time, I hit my head on a tree while I was on my way to my chiropractor. Thankfully, the second time a doctor from John's Hopkins (he had his scrubs on) was passing at the exact same time and helped me get up and basically examined me then and there. He told me he was a doctor which I kind of figured out already, and I told him that ironically a doctor at his hospital diagnosed hypermobility (ehler's Danlos) so he knew why I fell. He checked me for a concussion (I didn't mention the pole, it was embarrassing enough) and didn't believe I had one, although he admitted he prefers to make that decision somewhere other than a sidewalk lol, and helped me stand until I was stable enough to do so oh my own, and made sure I was feeling completely OK before leaving. I was and am truly grateful he happened to be there at the exact moment I needed him. Normally no one notices or ask if I'm ok in passing, I lie and say yes thanks for asking, but I'm not. Also, after the pole and tree, I was concerned about a concussion, thankfully I just got huge painful bumps where the impact was which are annoying because I can't really brush my hair because of the pain. Otherwise, I'm great! 🙃How are u?

@K87 I am beyond sorry that you go through all that pain. Chronic pain arthritis etc. Are all things that are hard to get over with. I myself have taken steroids to help me. They're supposed to last anywhere from 4 to 6 months but we will see. I really appreciate the effort don't feel bad for not making it there will be many more to come. I couldn't get my voice thing to spell your condition but I will say this I am so sorry I'm not doing it in the form of sympathy I'm just saying that I can empathize with your pain.

@DonaldK

That's awful, I can't imagine. I have soo many health issues both mentally and physically that I can't keep track, and I'm on sooo many medications it's ridiculous

I have a list of the health issues, medication allergies, medication with dosage, surgeries, and my blood type in a gazillion places...every wallet I own because changing accessories like ur wallet or purse is already involved and stressful, my phone in like 6 different apps, my husband has 1 in his wallet and my mother-in-law has 1 in all of her wallets and her car just in case, every room in my apartment and in several different places in the rooms, probably more that I've forgotten about

It's hard to remember

my disability is quadriplegia🦽

but it took just that much to slow me down-I was speeding down the road to an early death

now I get to see my children grow up and develop into awesome individuals…

plus my shoes and pedicures last longer

and

I’ve gained more understanding of what being human truly means…

it just takes me a little longer

I’m disabled, not handicapped-

to me, disability describes my body

handicapped speaks of my mind, intentions, and aspirations…

@AttentiveEar you seem very awesome. I can't wait to get to know you more

@DonaldK

Dunno if I'll make it to the discussion, time zones and the third day of a migraine going and all. So I'll drop my disabilities here.

Muteness, anterograde amnesia, other major cognitive issues, some chronic problems like chronic pain and chronic migraines, combined with BPD and PTSD.

Contrary to popular belief, out of all that, muteness is the least of a problem for me.

I can't really say what makes me me. Knowing that has been one of my biggest struggles for a good while now.

@OneErased I understand if you can't make it I chose that time because I wasn't sure of the time zone for everybody I can do mornings from here on out I just have to plan for it❤️

For advertising the sessions, what do you want done? If the times are known in advance, those on the group chat team should have the current information for adding them to the calendar.

We could set up 1 adult tag list that people opt into just for discussions (tagging in the forums for the notifications). We could also have 2 such taglists (ie. disability and support plus) and use both for 1 thread if a relevant topic for both areas. Or we could just use the current lists and tag them when making a post. If any of our members on the current disability taglist have a preference feel free to chime in!

Any other ideas? Open to suggestions from all!

@Donaldk @beck1

@AffyAvo I've been doing one every day.. I thought we couldn't do that with tag list? I just been trying to figure out a way so let everybody know and get more people involved.. I want to look for anybody who wants to be involved I didn't think we could use other tag list in separate forms? I really want everyone involved including support plus. I hope I answered your question. If not @beck1 can you help explain about alerts and what not? I'm sorry that it's not a professional way to put it but I don't know how else to say it.

Donald

@DonaldK @beck1

Sorry, I was overthinking about this. We had a main group discussion post before, we can do that again. We can tag our disability list, feature it and we will also let support plus know. With the event later this month we can remind about it then too. Donald, I will give more details to you.

@AffyAvo that's fine I don't know if this was referring to this afternoon I'll look in a minute.

@AffyAvo @donaldk

I don't know enough about tags etc. I am just starting to learn about the forums. But I have a lot more I need to learn

@DonaldK

I deal with HEDS, POTS, Asthma, Psoriasis, Fibromyalgia, Eczema and being investigated for IBD. I do sometimes suffer with my mental health on occasion, experiencing depressive episodes and anxiety.

What makes me me is my love for cross stitching, enjoying good movies, Netflix series, video games and lie ins, and loving a good cup of tea at the end of a long day!