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2024 - Taglist Disability Support
by CaringBrit
Last post
May 15th
...See more This thread controls an auto-updating tag list. To see the current list, go to Disability Support [https://rarelycharlie.github.io/taglist?3ec913e645043cdcd31f94a3324ab37c]. To add yourself to this tag list, press the Post to Thread button above and write the exact words Please add me. To remove yourself from this tag list, press the Post to Thread button above and write the exact words, Please remove me. This Taglist will be used for the Daily Check-Ins could even be used for Events etc. What happens after you join the tag list? You will notice an icon for a little bell up in the right corner of your screen. there is a letter icon, then the bell, then a jar, and then the icon for your account. That bell will tell you about your notifications. When we tag you, it will show up as a number on the bell. Click on the bell and a drop-down menu will appear and it will show you the link to the post where we tagged you. Current taglist as at Ma y 15th 2024 127 @777Bre777 @adaptableOcean4193 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @AguaNector6700 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @AutiBoy @Averayne93 @azuladragon34 @BacktotheTrail @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @Bndonovan02 @bouncyBreeze44 @bouncyVoice4149 @Breezy2013 @cal1860 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Chloe1644 @cinnamoncocoa @CocoaCassie @Colorfulcatsofhope @considerateBunny7436 @Countrygirl095 @crystallizedrequiem @Daisy7cups @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DonaldK @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticOwl866 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @IndigoWhisper @InfiniteThoughts2k19 @Jamesjones10123 @Jewels012222 @jovialButterfly6752 @JoyfulUnicorn @JoyIntoDarkness @K87 @kenzixo @killaj0ule @Kittibear @KuhnDisabled101 @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MartianGirl347 @MeaningfulSilence @Meowsicle @MistyMagic @mnhtx3 @modestHickory2783 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @NotKhan2 @NovaIsNB @Ofenkartoffel @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @tearstruck @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786
Join The Disability Support Community Team!
by MistyMagic
Last post
May 6th
...See more 🌞⭐️WANTED! -WANTED! - WANTED!⭐️🌞 Join the:- Disability Support Community Team Hey everyone! You may have seen me around the community, posting, replying, and leading discussions.  @AffyAvo and I are looking to grow the Team more now and expand! The Disability Support Community is an inclusive community, a positive space of support for people with chronic pain, disabilities, chronic illnesses, and impairments. Even if you don't have a disability/struggle with any impairments, you are still welcome to learn and be educated about different medical conditions such as autism, POTS, hearing impairments, cerebral palsy, etc. 7 Cups is all about providing and giving support as a Listener and sharing and receiving support as a Member. Please respect these boundaries. We are looking for lots of new team members to help us to do this so if you are interested and have some time to spare then please have a read of the following opportunities. Any questions just let me know or answer here in this thread and I will do my best to answer them. You must be with the community for at least a month before joining any leadership roles. Forum Supporter Role- A forum supporter is a leader who focuses on 1 or 2 communities and maintains engagement in the forums by posting and replying to threads with compassion and support. This role requires zero behavior points. You will also need to have been actively posting in the community before applying. Requirements for members: 25+ forum upvotes 25+ forum posts Make 10+ forum posts per month Taken the Member Oath [https://www.7cups.com/forum/Welcome_27/7CupsofTeaMissionCoreValues_207/MemberOathAllEncouragedtoParticipate_7447/1/] Requirements for listeners: Verified Listener 25+ forum upvotes 25+ forum posts Make 10+ forum posts per month Taken the Listener Community Guide [https://www.7cups.com/listener-community-guide/] & Listener Oath [https://www.7cups.com/forum/ListenerLearningJourney_149/ChatResources_61/ListenerOath_117/1/] Click here [https://docs.google.com/forms/d/e/1FAIpQLSefNgW-Va7dyBx67M3d27INmkndnwm1C3Ywa7NJoFa2EscQkA/viewform] to apply! *NEW Multi-role Application form Here* [https://docs.google.com/forms/d/e/1FAIpQLSehAkk72S0RWV1oQ5zShECQ6s-_fDYaxPE974iHorzqNRo1Ag/viewform] ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Community Mentor (Teen Community Star) Role- You’re a good fit for the Community Mentor/Teen Star role if you’re passionate about growing and developing a certain community. You’ll be responsible for overseeing the activity and safety in your chosen area, moderating all of the posts, and you’ll work closely with Forum Supporters and Project Agents to bring supportive posts and events daily. Requirements: Age 15 or older Verified Listener Badge (Applicable to listeners only) one month as a Forum Supporter 50+ chats 50+ forum posts 50+ forum upvotes Provide links to 3 forum threads written by you Apply here! [https://docs.google.com/forms/d/e/1FAIpQLSdIzfOAjOMLf8-RSMooTXOAKp3tFGMrKoOtfUfctB6DlI_kNg/viewform] *NEW Multi-role Application form Here* [https://docs.google.com/forms/d/e/1FAIpQLSehAkk72S0RWV1oQ5zShECQ6s-_fDYaxPE974iHorzqNRo1Ag/viewform] ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Chatroom Moderator (Listeners Only) Role- As a moderator in the group support room, you will be creating and maintaining a supportive and positive community culture in the member chatrooms. Requirements: 25+ group chats 2000+ cheers 4 or higher overall star rating on Listener profile 3+ written reviews Have Verified Listener Badge [https://www.7cups.com/forum/ListenerProjectsampTeams_148/VerifiedListenersProjectVLProjectQualityProject_685/IWanttobeaVerifiedListener_46935/1/] and Graduate Badge [https://docs.google.com/forms/d/e/1FAIpQLSe-YdSN09jvrtUJVB-HExOKQ8DkEo9ZtvoWt98zSJpe3P9Mow/viewform] No behavior reports in the past 3 months Been a Listener for at least 6 weeks Been a Room Supporter for at least 2 weeks Click here [https://docs.google.com/forms/d/e/1FAIpQLScX7nNahJocq0tgDYBesRicWxTfExFCe5QMI-O-04K-qBjZrA/viewform] to apply! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Room Supporter (Members) Role- A member leader who creates the desired environment they feel comfortable in and make the room more welcoming for both members and listeners. Responsibilities: To take part in community building with members, listener room supporters and moderators of the room. To create a kind, compassionate and supportive environment in group support To support members in the room through active listening skills adjusted for a group support setting To communicate with the rest of the support team To offer feedback and suggestions to team leaders Requirements: Friendly Face Badge Been a member for at least 4 weeks Have completed the Compassion Course [https://docs.google.com/forms/d/e/1FAIpQLSdbuGsqFMbaKWtCoC1WHaCJfaKfwfI8YZ62CsqTI2BzqVNwDg/viewform] Click here [https://docs.google.com/forms/d/e/1FAIpQLSetyJ7jp7W52-EIpqvFYLhfmpsgTW4BbzUwmi9r22OQ9AdH8w/viewform] to apply! ------------------------------------------------- Room Supporter (Listeners) Role- A room supporter is a listener who has been trained to support members in a group support setting and is integrated into the support team. Responsibilities: To take part in community building with members, listener room supporters and moderators of the room. To create a kind, compassionate and supportive environment in group support To support members in the room through active listening skills adjusted for a group support setting To communicate with the rest of the support team To offer feedback and suggestions to team leaders Responsibilities: Listener in the community for one month 1 written review + star rating of at least 3 Be willing to send at least 50+ messages per month in your chosen group support room Click here [https://docs.google.com/forms/d/e/1FAIpQLSetyJ7jp7W52-EIpqvFYLhfmpsgTW4BbzUwmi9r22OQ9AdH8w/viewform] to apply! Don't forget to join the Disability Support Community tag list here in this thread [https://www.7cups.com/forum/disabilities/WeeklyCheckin_1053/NewTaglistDisabilitySupport_202464/]
Interview Series - Master List!
by AffyAvo
Last post
April 27th
...See more Our series 'Interview Diaries' allows the community to share their direct living experience with conditions and disabilities and for us to learn from each other. To learn more about Interview Diaries, share as an interviewer or interviewee, and to be notified of new interviews via the taglist please see Call of Applications [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/CallForApplicationsToBeInterviewed_276642/] List of Interview Diaries:- Non-Epileptic Seizures With Audienta! [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/NonEpilepticSeizuresWithAudienta_275839/] Turner Syndrome With @Animeweebu123 [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/TurnerSyndromeWithAnimeweebu123_276707/] Spending Time With A Surfer @theboymoana [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/SpendingTimeWithASurfertheboymoana_276777/] Learning About FND With @EmpatheticListener0309💜 [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/LearningAboutFNDWithEmpatheticListener0309_277278/] Interview about being Deaf with FrenchMarbles [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/InterviewaboutbeingDeafwithFrenchMarbles_277578/] The magical @MistyMagic Tells Her Experiences With Celiac Disease [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/TheWholesomeMistyMagicTellsHerExperiencesWithCeliacDisease_277824/] Dissociative Identity Disorder with @DichotomousDetia [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/DissociativeIdentityDisorderwithDichotomousDetia_277991/] An Interview With @AffyAvo on Hereditary Angioedema♥ [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/AnInterviewWithAffyAvoonHereditaryAngioedema_278243/] Endometriosis and Me: an interview with @Lilyfae00 [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/EndometriosisandMeaninterviewwithLilyfae00_278539/] PoTS and Me: An Interview with @wonderfulRainbow817 [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/PoTSandMeAnInterviewwithwonderfulRainbow817_278731/] Tendonitis and Misdiagnosis: Rachel's Experience With Chronic Pain [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/TendonitisandMisdiagnosisRachelsExperienceWithChronicPain_278839/] Pervasive Developmental Disorder: Interview with @Goalsforlife [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/PervasiveDevelopmentalDisorderInterviewwithGoalsforlife_280227/] WarmLightXO Sheds Some Light On PCOS [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/WarmLightXOShedsSomeLightOnPCOS_280813/] Learning With Lucy: Her Experience With Epilepsy [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/LearningWithLucyHerExperienceWithEpilepsy_284621/] Grab a Cuppa and Learn about Multiple Sclerosis [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/InterviewDiariesGrabaCuppaandLearnaboutMultipleSclerosis_325500/] Living with Cerebral Palsy [https://www.7cups.com/forum/disabilities/DisabilityDiary_2664/InterviewDiariesLivingwithCerebralPalsy_326155/] Living with Meniere's Disease [https://www.7cups.com/forum/disabilities/DisabilityDiary_2664/LivingWithMenieresDisease_327897/] Living with CFS/ME [https://www.7cups.com/forum/disabilities/DisabilityDiary_2664/InterviewLivingwithCFS_328938/] T [https://www.7cups.com/forum/disabilities/DisabilityDiary_2664/LivingWithMenieresDisease_327897/]his list is updated as we post more Interviews. May 2024
Grief over the things I'll never be able to do
by asthesunsets
Last post
3 hours ago
...See more Sometimes, when I listen to music, all I want to do is get up and dance. But, as I try to express the song with my body, my leg fails or I lose balance and then I'm seated again. I wanted to run, but that hurts my back and I trip over my own feet. I wanted to swim, but my feet won't move to push me forward. My arms easily get tired by working alone. I wanted to go on long walks on a nightmarket or on the beach. I wanted to play football, too. Not watch as everyone had fun without me. I feel like I'm grieving everyday over the things I can't do. Sometimes it gets really disheartening. Especially for dancing... I love dancing, I have talent for it, but my body won't listen to me and I can't move it the way I want and I don't have the balance needed for it. It makes me so sad, even more so when I see others dancing and enjoying themselves and I can't. It's hard to deal with.
To the person, struggling to accept their disability
by Countrygirl095
Last post
3 hours ago
...See more An open letter to those struggling to accept their disability Dear person, I want you to know that I’m proud of you for doing the best you can although you’re worn out and you feel like you’ve had enough and you feel like the struggle doesn’t end. I’m here to tell you that you’re not alone, we’ve been through that struggle where we struggle to accept who we are because of the barrier society put in front of us. i’m here to tell you there’s nothing wrong with who you are and you are amazing just the way you are and you don’t have to change your thing the world could change your heart after all broken crayons could be used to make the world a colorful place just like we can with our abilities that could help others connect with diversity and inclusion. You are here for a reason keep writing your story keep shining your light the world needs it in the world that is often overlooked by darkness and sadness. Just know that you and I’m rooting for you sincerely, country girl, 95.
Weekly Check In May 29 - June 3
by AffyAvo
Last post
3 hours ago
...See more [A gif of a man dancing on arm crutches] On a day when you feel a bit more energetic than usual what is something you like to do? Is there anything you would like to share that you accomplished this month? How is this week going for you? Bonus question - who is this in the GIF? I think I found the right youtube channel but I can't see the gif well enough to be sure.
I have to sit because i am sick
by CheerySandi
Last post
4 hours ago
...See more I sit in my electric wheelchair. But i am not sick because i always sit, but i alwaysy sit and move around sitting, in my electric wheelchair, because i am sick. I have to sit and rest. Doctor prescribed me resting and electric wheelchair when i was still a child. For me it is better to sit and rest than to injure myself. I have to let my caregiver do the needed chores where physical strength is needed. I am very thankful for doctors, electric wheelchair, caregiver and everything else. I don't have strength and elasticity in muscles. I can type on computer, but i can't for example, transfer myself from bed to wheelchair as i can fall and get severe injuries. It is why i need caregiver to do help me with transferring from bed to wheelchair.
An Interview With @AffyAvo on Hereditary Angioedema♥
by FrenchMarbles
Last post
6 hours ago
...See more To commemorate HAE Awareness Day, I would like to ask you some questions regarding your experiences and to foster positive discussion in our community. For reader's clarification - HAE means Hereditary angioedema. *Trigger warning* For those who have emetophobia (the word is mentioned, no details) or needle phobias (no graphic details) Question (1): Since HAE is a genetic condition, did your parents also have HAE? Were you aware that you would have this condition from childhood? No, I have a de novo mutation which is a fancy way of saying new, which is true for about 25% of people with HAE. I had never heard of the condition until I was told my C1 inhibitor function was low. Question (2): Most times during early childhood or adolescence a person may not recognize the symptoms associated with HAE until later. Was this the same for you, how was your experience with HAE progressively? It has definitely gotten worse overtime for me, I think due to other health problems. In hindsight, I can recognize attacks I had as a child though. For example, I went to the emergency room as a young child from a bug bite as my entire face was swollen. A hairline fracture resulted in swelling way beyond what was normal for the injury. I also lived with abnormal things that were considered to be minor that I highly suspect were attacks, like a lot of frequent vomiting that I would get over quickly and sore throats. I do have asthma and allergies, so I think that made it easy for doctors to just handwave away my symptoms. Question (3): What kind of symptoms do you experience because of hereditary angioedema? The main thing is it causes severe swelling, that’s the defining feature of an attack. With that comes pain and general discomfort. Depending on where the swelling is it can cause things like gastrointestinal problems, voice changes and difficulty breathing or seeing. I have completely lost my voice before because of it. There are also both prodromes and postdrome symptoms that occur before and after. I tend to get pretty severe fatigue and malaise both before and after and sometimes mood changes or a sense of doom beforehand. Question (4): Was it difficult for your partner to learn how to best support you? He actually learned how to give me my medications extremely well quickly. I had a lot of fear when I first got diagnosed though and his favourite phrase at that time was don’t worry about it. He learned that wasn’t helping and after a while, we would laugh when we caught him saying that. He also did have a great deal of stress with getting my IVs started, as even though he was really good they didn’t always work on the first try or sometimes would stop part way through. So he had to learn to deal with that stress and we both did much better when a subcutaneous option was available. I think he used to brush off how bad it could be, a few years into my diagnosis we went to an educational session and the number of people with tracheostomies (a hole in the neck to the airway) or scars from previous ones was a wakeup call for him. Question (5): You’ve been on 7 Cups since 2014. How has the community of people diagnosed with HAE grown, and the disability support community in general? The HAE community on 7 Cups is mostly me, although I did come here based on someone with HAE who shared their referral link in an online group. Every now and then I meet someone else who has it or another type of angioedema. Off of Cups, it has grown a ton and the ‘rare’ status may be dropped as diagnosis rates improve. The disability community has grown so much! When I first showed up we had one forum that wasn’t divided into categories beyond ‘disability’ Shortly after that guided discussions were a thing and people like you stepped up to do some disability ones (yes! @FrenchMarbles was one of the early discussion hosts!) and we got our own 24/7 group chat room shortly after that. Even with those things, many people on the site were confused about why someone with a physical illness would be here. I actually started the chronic pain and illness forums and eventually those were combined with disability and the subcommunity formed. Since then the disability subcommunity has grown and I look forward to seeing where it goes! I’m so thankful for people like @DonaldK (who started the disability forum) and the early disability session hosts, they gave me a place to be when I came here and likely wouldn’t have stuck around without a dedicated place. Question (6): What challenges did you face from when you were diagnosed with HAE till now? At first, there was just a huge learning curve and a lot of fear. At that time the only medication in Canada was an IV c1 inhibitor, so my very first treatment was combined with IV training. That did NOT go well, I was pretty much unconscious by the end of it. Besides the fear of self-starting and IV, there was also the fear that if I had a throat attack and didn’t get it done quickly I could die. Funnily enough, even when I stitched to subcutaneous injections which are WAY easier I was still freezing up at times, so I went off to more therapy to deal with that phobia which was well worth it. I wish I would have done more therapy earlier on. Learning triggers was also very difficult, I have a lot and I suspect I will learn more with time. Being active is one so just learning to really listen to my body and that threshold took a lot of trial and error. I also always figured I had an undiagnosed problem that made the HAE much worse, as it did worsen considerably leading up to my diagnosis. My symptoms and test results also backed that up, but everything was fairly generalized. It actually turns out I have tumours. It is a rare condition so I haven’t shared much about that on 7 Cups to keep some anonymity. When those were first found it was assumed by multiple doctors that I had very advanced cancer and no one really gave me a timeline but it wasn’t good. I was literally told to have no hope. Sidenote - I actually came to 7 Cups that day and told some people I was dying, so to anyone who was there and didn’t hear updated info, I wasn’t lying, just misinformed! The support and love I got during that time were invaluable! So at this point, it’s figuring out ‘normal’ again between that and issues that cascaded from that. Plus throw in COVID and connected problems like right now a healthcare system that is crumbling and processing trauma, figuring out how to interact with healthcare that has really let me down at times. Question (7): What valuable lessons/experiences have you had living with HAE? Advocacy! When I was first diagnosed I joined online groups about HAE. Most of them were American and I would hear horror stories of emergency room experiences, many of them in small towns. I figured here would be a different, different healthcare system, in a major city. NOPE! First emergency trip for an attack I experienced a lot of what others shared, they wanted to treat me with allergy medications. I denied multiple medications and tried a lot of doses of one that made things worse until eventually, they agreed to use my medication. I have learned since then, to speak like an expert - as I am one! (to be fair at that time things were so new I wasn’t). Delays still happen at times when they shouldn’t with treating attacks. I do not accept drastic treatment changes from the plan my specialist has set. That advocacy has helped me since, from asking to having certain tests done to ensuring things that should be done actually get done. I have also learned to incorporate mental resources into my overall healthcare. With the healthcare system, many of those are outside of the public system, especially if not involving psychiatric care, but there are some, there are also some other free resources provided by the government beyond the system and work/school benefits cover some of the others. I get to mentor med students! It’s a wonderful program that many medical schools do where people with chronic conditions teach the students how to be good doctors to people like us. Question (8): Regarding our theme for this mental wellness month: Speaking Up And Stigma, what instances have you faced stigmatisation from individuals and society at large? There has been a lot of issues with the assumption I am just anxious or stressed, both before and after diagnosis. There is also a lot of stigma associated with IV use. There was an internalized stigma, particularly when my symptoms weren’t severe, but the fatigue persisted. I sometimes would wonder if I was being lazy, especially when I had quit school and wasn’t working. Question (9): Define who you are using 5 adjectives. Stubborn, loyal, intelligent, caring : Question (10): What interests/goals do you have if you are comfortable sharing. I have always had an interest in science, especially medical science. : Shortly after being diagnosed I started gardening which I really enjoy. I would like to learn canning. Question (11): What would you say to people who may be experiencing difficulties dealing with genetic conditions such as HAE? * It’s a steep learning curve, but so worth it to put in the effort to learn. You will be the expert - with someone who really specializes in the condition you are the expert in how it’s affecting you. When dealing with other doctors, well, there’s a good chance you will be the expert in the details of the condition itself, even if it is something that’s more common or well-known. * Connect with other patients and organizations, they will really help with the above and other things! If it’s so rare that those groups don’t exist, seek out broader using key terms like rare, an organ or system, etc. Sometimes you find the specific people within the broader communities. * Take care of your mental health! Sometimes the medical is far too draining to throw in more things to manage, and that’s ok. Just take out a bit of time to destress and as things settle seek out some of the outside mental health resources. There’s typically stress, grief and sometimes trauma involved. * A normal will be found! It may look very different from what you had planned. Symptoms may or may not be reduced. Things will improve though as you learn what to expect and how to work around them and you will find new normalcy. Question (12): Is there anything else you would like to include? (resources, stories, etc) The HAEA [https://www.haea.org/] has some great information. If anyone has recurrent swelling episodes I would definitely encourage them to keep up with getting it investigated until diagnosed, as there is chronic histamine based swelling, MCAS, acquired angioedema (similar to HAE), etc. If people have more questions about HAE they can ask me :) Wow, thank you SO much for your knowledge on the Hereditary Angioedema, I feel you are a wonderful educator and the way you inform others is astonishing. I've seen your work here on 7Cups and I am forever astounded by what you do for this amazing community. You inspire me to reflect on my life and realise I have to be appreciative of what I have and remember the value of being kind because you never know if someone is going through pain. I also want to thank @MynameisNicole for her hard work, especially with the interview series, a wonderful person and I cannot wait to see how we evolve as a team and a community by spreading awareness throughout the website. ========================================================================================= If you are interested in participating in this series, please fill out this [https://forms.gle/W9MJEH7F9oSz5MpJ9] form. To be added/removed from the following taglist, click HERE [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/CallForApplicationsToBeInterviewed_276642/]: @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @Averayne93 @Azalea98 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @DichotomousDetia @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WeedyGarden @wonderfulRainbow817 @xandia @Zed786
Non-Epileptic Seizures With Audienta!
by MyNameIsNicole
Last post
7 hours ago
...See more Hello everyone, this is the second interview under the series dubbed "Inclusivity Diaries" by the Disability Support. Read the first interview post for the autism awareness day event Here [https://www.7cups.com/forum/SupportPlus_205/AutismSpectrumSupport_150/AutismSpectrumDisorderPersonalexperiencesbeyondstereotypesandassumptions_275079/] (text in blue is clickable). Special thanks to @audienta, who was so patient and kind in answering these questions. Audienta has always been a helpful resource, and greatly helped me when I needed help with the seizure first aid post [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/SeizureFirstAidWhatItMeansAndHowToAdminister_274823/]. Audienta also created an amazingly resourceful post on non-epileptic seizures, with everything you need to know. Click here [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/NESEverythingaboutnonepilepticseizures_275028/] to read! ------------------------- Question (1): Was it difficult to get a diagnosis with NES? What were the challenges? Answer: For me, the NES became stronger over the years. For a long time, I thought they were panic attacks, even though it often didn’t really make sense. When I had the first very obvious seizure, I got the diagnosis “dissociative seizures” quickly. It frustrated me a lot since they didn’t even take epilepsy or something else in account, just because I have other mental disorders. It needed a lot to get diagnosed properly and with that, get access to treatment options. Question (2): When dealing with seizures, what is one thing you wish people knew about them? Answer: I wish that they knew that there are a lot of different kinds of seizures which have to be handled differently and that they believed me, my medical ID and my emergency contact and followed our instructions. I have often had the experience with medical professionals that they either freak out when I get a seizure and call the ambulance even when I’ve tried to give them instructions beforehand. Or they realise that I don’t have epileptic seizures and therefore think that I simulate and treat me very poorly. I’ve even woken up in a psychiatric hospital multiple times because the emergency room staff didn’t know what else they should do with me. Question (3): What are struggles of having non-epileptic seizures? Answer: At the moment, I can’t really go anywhere without someone by my side. NES cause a lot of uncertainties for me as well as for my environment. I never know when to expect the next seizure, how long it’s going to take and how the people around me are going to react. Also, I feel the effects of a seizure for days. For example, it worsens the pain, the fatigue, the brain fog, etc. And this has the potential to stress me out which increases the risk of getting another seizure… Question (4): Do you think there is sufficient medical research and treatments to support those experiencing NES? Answer: No, definitely not. I mean, there’s even a lack in the research and treatment for epilepsy which is more common than NES. Like I’ve mentioned before, most of the medical professionals that I’ve dealt with before, didn’t really know what non-epileptic seizures are and how to handle them. Regarding treatments, psychotherapy is the recommended way to deal with it. For me, it hasn’t helped yet and I know that a lot of other people don’t find helpful treatment as well. The prognosis for people with NES currently isn’t good and I really hope that there will be more research on it soon. Question (5): How would you explain non-epileptic seizures to someone who has never heard of it? Answer: Non-epileptic seizures are very similar to epileptic seizures with the difference that you can’t see unusual activities in the brain in a normal EEG. Like epileptic seizures, NES can look very differently. Even one person can have different types of seizures at different times. You can learn more about it here: Non-epileptic seizures | 7 Cups [https://www.7cups.com/forum/DisabilitySupport_47/ArticlesResourcesConditionSpecificInformation_458/NESEverythingaboutnonepilepticseizures_275028/?post=2923265] Question (6): What do you think is the best way for people to support someone when having a seizure (both during and after) Answer: It depends who you are supporting and what kind of seizures they have. @MyNameIsNicole has written a great post about seizure first aid here: Seizure first aid | 7 Cups [https://www.7cups.com/forum/DisabilitiesSupportCommunity_47/ArticlesResourcesConditionSpecificInformation_458/SeizureFirstAidWhatItMeansAndHowToAdminister_274823/] For me, if I have a grand-mal seizure, the first thing that I’d like you to do is to make sure that I’m safe and laying on my side. Next, you should make sure that I get enough oxygen, especially if it’s a long seizure. As soon as you know that I’m safe, you can relax, that helps me as well. Things you can do, while waiting until the seizure has passed, are applying something cold on my neck, talking to me calmly and maybe touching my arms so that I know that you are there. If the seizure takes longer than 30 minutes, I need someone to give me my rescue medication. And then, after the seizures, it’s really important that you make sure that I don’t drift away again and that you stay with me until I’m feeling okay. Question (7): Do you have any hobbies/passions? What activities do you enjoy doing? Answer: I like listening to and making music, drawing, painting, writing, and being outside. Having deep conversations with my friends or other people can be really valuable to me as well. And of course 7 Cups! I love to be here. Question (8): Are there any annoying questions people ask about non-epileptic seizures and seizures in general? Answer: No, I don't think that there are annoying questions. It’s the prejudices that are annoying. Question (9): In your opinion, is there a stigma around conditions that cause seizures such as NES, epilepsy, encephalitis, etc? Answer: I don’t think that I have personally experienced a stigma that’s regarding conditions that cause seizures in general. But I think that there is a stigma that all people who have seizures are cognitively disabled which definitely isn’t true. Question: Is there anything else you would like to say? NES are a symptom of a functional neurological disorder (FND). Besides seizures, for me, FND also causes symptoms like pain, paralysis, visual changes, and a lot more. Why I’m mentioning this: April 2022 is FND awareness month! You can learn more about it here: World FND Month - FND Hope International The [https://fndhope.org/fndaware/] tag for this month is #fndaware. ------------------------- With the wonderful help of Audienta, I hope you learned a few things about NES as well how you better support someone when having a seizure. The aim for this interview series is to acknowledge and spread awareness of the different conditions people live with by learning from people with direct experiences. If are interested in participating in this series, fill out this interest form [https://forms.gle/W9MJEH7F9oSz5MpJ9] and we'll get back to you shortly. What did you learn? Comment below❤️
Does anyone use electric wheelchair due to low muscle tone?
by CheerySandi
Last post
17 hours ago
...See more Does anyone use electric wheelchair due to low muscle tone? I use electric wheelchair and i have got personal assistance for tasks where a lot of physical strength is required. I am glad that i have so much support.
My little disability space [TW]
by AvyIsKing
Last post
2 days ago
...See more Hi! My name is Avy. I'm 15 years old. Basically I am going to use this space to rant about pain, the affects of my disability, and weird little things about it no one notices.  Let me explain my story a little bit: So in 2021 I was playing soccer and I got stepped on, and then stepped on again early 2022. I went to my doctor and she sent me to an orthopedic doctor. That was when the surgeon said he was surprised I hadn't been to see him sooner. Because of my injury I ended up with severe tendinitis and arthritis in my foot. I was sent to physical therapy. Through months of intense physical therapy 4 times a week and going to the surgeon every 3 weeks, he figured this out. I have naturally high arches, it runs in my family. But for some reason the tendons in my foot stopped growing when I was about 7. Which explains why my feet have always hurt. As I'm getting older and taller it's getting worse and one day the tendons in my feet will snap. I also have tri-pod foot (that's what he called it) from my heels being misaligned. Basically only 3 really small points on my feet ever touch the ground. Not even my toes 😨. I've gone through 2 pairs of inserts, I do physical therapy every dang day, and nothings working. Basically now my only option is surgery. Since I've been limping for 2 years my knee has been affected and so has my hips. This whole process has been really isolating and discouraging. I kind of just want it over.  Anyway lots of weird things happen so I'll share them here!
Hurt and hurt
by WomensLiveMatters2074
Last post
2 days ago
...See more Everyday due to my disability i don't know what to do it hurts me it breaks me i m fed up I m done I feel none likes me n ignore due to my disability 
Pervasive Developmental Disorder: Interview with @Goalsforlife
by wonderfulRainbow817
Last post
Friday
...See more Welcome to the inclusivity diaries where we interview people who have disabilities and conditions, raising awareness within the 7Cups community. In honor of Autism Pride Day (June 18th) that we missed, I had the pleasure of interviewing a listener named @Goalsforlife. Thank you Goals for taking the time and sharing about PPD with us! Q: Welcome Goals. You and I have gotten to interact with each other the last few weeks and your growth as a listener has been remarkable! To break the ice a bit, what has been your most favorite part of being a listener? Answer: I think helping people out and learning new skills. It gives me a place that I can do things without people telling me I can not do things. Q: Today we’re talking about your conditions you’d like to raise awareness, because obviously when we’re online, we can’t see what you go through on a regular basis so I would love to get to know you better. Why don’t you start with letting us know what disabilities or conditions you have? Answer: Pervasive Developmental Disorder, developmental delays, learning problems, social issues are too hard for me to interact with new people ,Heat and loud noises sensitive and me getting Overwhelmed and Overstimulated easily . sometimes it takes me longer to understand. I never sneezed in my life so that is special about me. Q: You mentioned you have PDD, in your own words for those who have never heard of it before, what is it? Answer: Pdd is now part of autism so I guess I can say high functioning autism. Q: How did you find out you had PDD, was it something you always had or did you find this out later in life? Answer: I was missing milestones and when I was 2 my dr kind of had tests done. I think that's how I got it. Q: Is there any treatment or therapy for PDD? Answer: My parents put in services starting when I was 2 but I do not remember them. I was put in a special preschool. When I started school I was in special ed with ot , sp and easier pe classes. When I started 6 And up I had an aide with less school work, not taking extra time on tests. I was all so in swim class , special olympics , best buddies, ebuddies and A place helps me get what I need as a grown up. Q: Is there anything else you would like others to learn about PDD? Answer: I learned that even if you have a disability you can overcome things . Also spreading the word about it is also important. I am like anyone else but I will let you know if I need help. If you are interested in participating in this series, please fill out this form. We’re all about wanting to raise awareness with the 7Cups community and if you feel happy educating us, we’d love to hear from you! You can also use the link above to apply to be an interviewer, we would appreciate you helping us out! [https://forms.gle/W9MJEH7F9oSz5MpJ9] Tagging: @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @Averayne93 @Azalea98 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WeedyGarden @wonderfulRainbow817 @xandia @Zed786 To be added/removed from the following taglist (for Interview Series), click HERE [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/CallForApplicationsToBeInterviewed_276642/]
Plastic straw ban is an accessibility issue
by Disneywoman
Last post
Friday
...See more I really don't get why able-bodied people  have fits about the disabled people needing to have plastic straws instead of being able to use the various other Straw alternatives that are around- paper, steel ,pasta. rice,  metal, etc.   Despite being disabled I'm lucky I can either drink from a reusable  stainless steel straw or just drink straight from the cup.   But not everyone has this luxury.   And sometimes Plastic straws are only accessible method of disabled people being able to safely drink something without choking or impaling themselves on a straw or the straw doesn't have the risk of melting in a hot drink or get mushy in a cold drink.   And something I have discovered is that apparently is that plastic straws were one of the earliest versions of the "curb-cut" effect that sometime created for ill or disabled people could be used by everyone  In either late 2019 or sometime in 2020 (but maybe as early as 2018)  Canada has created a ban on plastic straws.  So this post is going to be why other alternatives are not as good alternatives as people think they might be for disabled people. Let's start with the paper/rice/pasta straws all three of these straws have the same issue that in hot drinks (coffee or tea) they'll will melt pretty quickly.  I don't know about the last two but I know from experience,  that with paper straws in a cold drink like an Tim Horton's Ice Cap that a a paper straw will get mushy or soggy to the point that they kind of need to offer spoons along side the straws if you get what I mean.   The Rice and pasta straws also have the problem of being useless to people with CD or Gluten-intolerance can't use those types of straws or else they'll get an upset tummy or worse.    Stainless steel and metal straws can't be used in hot drinks and  not everyone has the ability to clean out the straw on their own.    And also the stainless steel and metal straws can cause an impalement hazard if a disabled person using it suddenly starts to fall forward and onto the straw. Also the metal/stainless straw because of the lack of the bendable part of the straw like with a plastic straw, it means that a disabled person would have to have some one lift the cup up to their mouth for them to even use the straw. And for all the straws,  there's two things money (a lot of these are too expensive for disabled people to buy) and there's also the fact that because disabled people are forced to bring their own reusable straws now, that if they forget their straws at home-they can't be as spontaneous as non-disabled friends if the friends suddenly want to go out to drink after a day on the town and yet the disabled person can't go because they don't have a straw and the business might not have the correct kind for them.  And here's a chat with straws that don't work and why plastic straws do: 
Other inaccessibility issues for disabled people
by Disneywoman
Last post
Friday
...See more This will be a post about a bunch of various inaccessibility issues caused by business or society in general. But most will be about businesses. Soda Fountain So something I found out while researching a topic I will get to later  is that the Coke-Freestyle Soda machine (touch screens) aren't good for people with visually impairments or are blind.  There's no audio way nor an app as far as I know, to help a blind person to use the the item.  That it means they have to have someone (like myself for a friend) or  bug an employee to help them get a drink because they can't do the touch-screen themselves.  And if there's an app-like I believe there is for Subway's similar soda fountains which have a touch-screen that it means that visually impaired or blind folks can't be as spontaneous as their non-blind counterparts.  Like what if they want to mix it up a little?   Or what if the person is bad with technology?  Another kind of soda fountain that resembles the old-school kind of Soda fountain but yet is different because the newer ones  don't have the levers and instead there's buttons (which on a totally enough subject aren't braille or enlarge) that you have to push to get your drink in the cup.   Most people would be able to with these new soda fountains to hold onto the cup when they press the button with the other hand.  But people with a limited mobility in one hand, and  0 mobility in the other hand can't use these kind of machines on their own so would need to ask for help from someone and that's something that disabled people don't like doing.. With the actual old style soda fountains somehow-were easier to use I'm going to assume that it was because of memorizing if it was at a place they been to before.   And these were also handy for people with limited mobility difference.  Next topic: Drive thrus 

Welcome to the Disability Support Community!

This is an inclusive community where people can seek and provide support and post about topics related to learning disabilities, chronic pain, chronic illnesses and conditions, physical disabilities and developmental disabilities. You are welcome to join in even if you don't used disabled as a label for yourself.

There are a number of ways to get involved and be supported. We have a pop up teen chatroom and a 24/7 adult chatroom.

There are guides for Chronic Pain and T2 Diabetes
There are Q&A sections for Disabilities and Chronic Pain

Members may connect with a listener who has disabilities, chronic pain, cancer, diabetes, adhd or autism listed as a topic and there are listeners with disabilities supporting people with disabilities

We encourage people to post new threads and respond to others in the forums! Some good ways to get started are to introduce yourself and to join our tag list to be notified of weekly check ins and events. We also have an Interview Series: if you would be open to sharing more about yourself and want to be interviewed.

Looking to be even more activity in the Disability Community? Join as a leader!

*Note we are inclusive of all disabilities but ADHD and Autism each of their own communities which may be of interest to some of you.

Community Guidelines

🌟 Please be respectful of everybody's thoughts and opinions.

🌟 Don't think you are alone, so please share

🌟 Please be patient if you feel like your concern hasn't been addressed yet; we are working hard to add more leaders and supporters.

🌟 If you have any concerns, reach out to a leader or make a post.

🌟 For Listeners only - please remember that you are here to give support, if you are seeking support then please switch to your Member account.

🌟 Most of all - don't forget to be awesome! You are loved and accepted here, no matter what!

Guidelines For Using AI 


We all want the Disability Support Community to be a safe place where people are able to be their authentic selves and receive support. We understand that AI tools can be helpful in reducing barriers, allowing people to better express themselves, and allowing those with some disabilities to be able to read, write, and post, but excessive, or complete use of AI can feel robotic and reduce supportive person-to-person interactions. It can also lead to false impressions of the poster. We want to try and avoid this and help our Community to be as inclusive and as welcoming as possible to all users.


What is AI?

AI is short for ‘artificial intelligence’ which is software, a program or algorithm that works to sort, order, and combine data to give a response or answer to a question or input. Artificial intelligence is the ability of a computer, software, or computer-controlled robot to perform tasks that are commonly associated with the intellectual processes characteristic of humans, such as the ability to reason. As yet no AI’s match full human flexibility over wider domains or in tasks.

Some of the most common examples of AI in use today include: 

  • ChatGPT: Uses large language models (LLMs) to generate text in response to questions or comments posed to it. 

  • Google Translate: Uses deep learning algorithms to translate text from one language to another. 

  • Netflix: Uses machine learning algorithms to create personalized recommendation engines for users based on their previous viewing history. 

  • Tesla: Uses computer vision to power self-driving features on their cars.



If using AI tools please adhere to the following:


  • Include some of your own personal expression. This could come from a detailed, personal prompt to the AI tool or include some of your own words with a post.

  • Cite which AI tool(s) you used, which applies both to AI-generated and AI-edited text as well as images too. For instance, if you use Dragon to voice type then say so and if the text is AI-edited include that fact too.

  • Avoid posting misinformation. AI sometimes creates personalized anecdotes, facts, or references. If you are sharing an experience, don’t post an AI-fabricated one. If posting information check that it is correct and aligns with trustworthy sources.

  • Cite the source of your information. It can be important to know and understand the source of information posted, AI-generated content may draw information from their database so try and use factual sites that can be checked and that aren’t misleading.

  • Don’t make threads in excess. AI can make it fairly quick to create a lot of content. We want to give everyone’s posts a chance to be seen. Please don’t post a large amount of threads in a short period of time, this is called ‘flooding’ and can prevent other posts from being seen.

  • If you do feel like there’s a lot you want to state on one topic, consider making multiple posts within the same single thread. Or create your own ‘Disability Diary’ thread and post there, this will increase your visibility, and those who reply will be notified when you add another post.

  • Follow the guidelines. You are responsible for what is posted from your account, even if AI was used in the creation of the post, so please double-check what you write and post!


For more information please read this post by @Heather225 - 7 Cups Community Director.


Do’s ✅  and  ❌ Don’t List:


Do - Humanize your post with your own expression and words

Do - Cite the AI tool(s) you use

Do - Make ONE thread and post to it if there are several posts you want to make

Do- Read things over and ensure the guidelines are being followed

Don’t post something that is entirely AI-generated with little input from yourself

Don’t post misinformation

Don’t flood the forums with AI threads, or multiple threads


If in doubt please ask @MistyMagic  (Adults and Teens) or @AffyAvo (Adults) or consider joining the Disability Community Support Team. More information Here







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