MyNameIsNicole Listener Profile

International Week Of The Deaf: Safeguarding Deaf People In Times Of Crisis

Disability Support / by MyNameIsNicole

September 28th, 2022

...See more Hello everyone, The discussion topic for today in celebration of international week of the deaf [https://www.7cups.com/forum/DisabilitySupport_47/Events_201/InternationalWeekOfTheDeaf2022Masterpost_286454/] according to World Federation of the Deaf is Safeguarding Deaf People In Times Of Crisis With the event of our most recent crisis, the covid 19 pandemic has really shown us the need for new ways to guarantee inclusivity when passing down information. Under the event of different crises, including infectious diseases, natural disasters and armed conflicts, deaf people all over the world experience language deprivation, audism and socioeconomic disadvantages. Audism is the belief that the ability to hear becauses on superior to those who can not hear. There was an interview conducted by IWDP, and something I gathered was the importance of inclusivity. Nigel Howard spoke about how interpreters needed to be shown during broadcasts about the pandemic on news channels. Not just occasionally, but everytime. It's important that deaf people can easily access this information, and know where to get support. And it's not just about news channels, but other programmes as well. ''In the back of my head, I'd think about the deaf children having that exposure seeing a deaf person using ASL on TV. Then they'll be able to speak for themselves when the educational/medical community denies their access to ASL and focuses on oralism. The children will be able to point out that that a deaf person is signing on TV and there is nothing wrong with that! It validates them, heightens their self-esteem and helps them know it's okay to be deaf". It's also important not just to have an interpreter on TV, but for deaf people to be involved in the decision making process. Especially about how to best provide support and access for their community. You can watch the interview, HERE [https://www.youtube.com/watch?v=goswP5VXcUk]. ------------------------- Questions Does your national government provide interpreters for television broadcasts? Is it only occasionally? What do you think your government can do to be more inclusive especially regarding communication of information to deaf people? How do you think individual owned businesses can promote inclusivity and make their services accessible to everyone including deaf people? Has there been a time when you did not feel included when trying to access support or service? e.g healthcare, education, etc. What do you think could have been done better? After watching the interview, what are your opinions? ------------------------- @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @blissfulTouch29 @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @crystallizedrequiem @DichotomousDetia @disneymoonlight @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelycoacoa @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @theboymoana @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WeedyGarden @wonderfulRainbow817 @xandia @Xisle @Zed786

International Week Of The Deaf 2022 Masterpost

Disability Support / by MyNameIsNicole

September 28th, 2022

...See more Hello❤️ This week celebrates the week which the World Federation of the Deaf (WFD) was established in 1951. The disability community has celebrated this even over the years, and I am glad to be a part of it this year. The theme for this week is 'Building Inclusive Communities For All'. For everyday this week, there is a discussion that sheds light on areas where there is need for inclusivity especially for the deaf community. You can the discussion for each day on the WFD website, by clicking HERE [http://wfdeaf.org/iwdeaf2022/]. On the 23rd of September is International Day of Sign Languages a day to celebrate the exact date World Federation of the Deaf (WFD) was established. The theme for that day is 'Sign Languages Unite Us!' The theme is set to recognize and promote the various national sign languages around the world, and advocate for support for sign languages as an essential human right for the deaf community. Please join the disability support to celebrate this event by participating in the following activities lined up for this week. They will be hyperlinked and updated once the posts are made❤️ Discussions Thursday 22nd September: Safeguarding Deaf People in times of crisis [https://www.7cups.com/forum/DisabilitiesSupportCommunity_47/Discussions_1046/InternationalWeekOfTheDeafSafeguardingDeafPeopleInTimesOfCrisis_286517/] Friday 23rd September: International Day of Sign Languages: Sign Languages Unite Us! Saturday 24th September: Intersectional Deaf Communities Sunday 25th September: Deaf Leadership for Tomorrow Ice-Breakers What is your national sign language? How did you learn sign language? Room Discussions to be posted soon. ------------------------- If you are interested in doing an interview for the inclusivity diaries to discuss your everyday experiences with people in society as a deaf person, please fill this interest form [https://forms.gle/W9MJEH7F9oSz5MpJ9] and indicate so. It'll be a mass interview, so the questions will be brief but comprehensive❤️ To be added to the following taglist, click HERE [https://www.7cups.com/forum/DisabilitySupport_47/DisabilityTeam_1148/NewTaglistDisabilitySupport_202464/1/]: @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @Azalea98 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @exuberantBlackberry9105 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MilaAvery @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @TheResilientDancer @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WarmLightXO @WeedyGarden @wonderfulRainbow817 @xandia @Zarram77 @Zed786 ------------------------- Ice-breaker: Tag someone in celebration of International Week of the Deaf!

Learning With Lucy: Her Experience With Epilepsy

Disability Support / by MyNameIsNicole

August 29th, 2022

...See more Hello everyone. Recently I had the pleasure of speaking to a very special someone who provided insights to her direct lived experience with epilepsy. Something this person made me realize is that something does not have to be good for you to get good out of it. I'd like to thank @Lucy2 for writing her story in the Inclusivity Diaries. ------------------------- Q: Hello Lucy, thank you for taking time out to speak with us today. What do you think about the inclusivity diaries and what motivated you to share your story? Hello Nicole , Thank you for giving me the opportunity to chat with you today. I think the inclusivity diaries give a very positive opportunity to share our own medical struggles, in the hope that they bring some comfort to others who may be going through this and also to dispel fears. Q: What is something about epilepsy that you feel is not accurately represented in the media: I hate the way the media uses the term 'epileptic' eg: ‘they are epileptic’ it really makes me upset, it’s derogatory and belittling, I’m not epileptic, I have epilepsy! Q: What signs or symptoms did you discover that made you go in search of medical advice? Well, just writing this brings back such horrible memories. I suddenly had an aura as I got out of the shower and I felt scared and knew I was about to pass out. I was taken to the hospital and later sent home, but this happened almost evening for 2weeks until they admitted me to the hospital, it was terrifying. Q: How was your experience during your journey of getting an accurate diagnosis, would you say the medical professionals listened to you and responded promptly? It was a very frightening time, it was several scary months before I was diagnosed correctly. Q: What are things you did not know about epilepsy that you now know? I didn’t know it was a lifetime sentence or that I would be dependent on medication for life, that upsets me. Q: What are things that you wished people knew about epilepsy, and common misconceptions they tend to have? I wish people would view epilepsy just as they do other medical issues, instead of being so shocked and afraid, that’s why there is this awful stigma around epilepsy. Be more compassionate and supportive, and understand that we have to work twice as hard as others to achieve anything in life. Q: What accommodations or ‘lifestyle’ changes have you made for the purpose of managing your epilepsy? I’ll be honest, epilepsy ruined my life! I had a wonderful job that I had to leave, I couldn’t drive anymore so I was then housebound and had to rely on others. It took many years to accept the loss of my life and to find other ways of living with any meaning. That’s why I have such an affinity with anyone grieving ,grief comes in many forms, many forget that! Q: What communities either online or in-person have you relied on for emotional support and a place to get information and resources? Unfortunately, I was too afraid to look online for support, I hated the very word epilepsy and still do, if I’d had a place like the 7cups community to support me, my life would have been so much better. Q: Are there any stories you’d like to share regarding the struggles you’ve had with living with epilepsy? I found it difficult to express myself, the illness and medication took its toll on my brain, so I had to fight to keep my brain working, so I studied, took courses, volunteered online, anything that made my brain work, and I achieved a BA hons degree and now I am in my final year of another degree for Psychology & Counselling, so I am very proud of myself. Ironically, I wouldn’t have achieved that if I hadn’t had epilepsy. So for anyone who feels their future is over, just go for your dreams, you can achieve whatever you want in life. Q: As a person who also has severe asthma, do you think it contributes or affects the conditions or symptoms that come with epilepsy? Interesting question Nicole, no I don't think it does, in fact I’ve had more admissions due to asthma than epilepsy, both late onset illnesses, which now you’ve raised the question. hmm… I may look into this Q: What advice do you have for people who are having a hard time getting a diagnosis for epilepsy, or people experiencing prejudice because of it? My heart goes out to them<3. Stay strong and push for appointments and tests, calm your fears and concerns by using distractions, write a journal, listen to calming music and unlike me find online support and join a community like ours, don’t give up! Q: As a community leader and an exceptional listener on 7 Cups, in what way do you think you have impacted the community and how has the community impacted you? I like to feel I have given my best to 7 Cups and after seven and a half years, I think I’ve made my mark, like so many other excellent Listeners here. 7 Cups has been a massive influence on my life and I’m eternally thankful to @GlenM @Heather225 @CheeryMango for trusting in my abilities. Would you like to share anything else? Thank you yes, There are now seizure alert dogs, who can sense a seizure coming on, giving sufferers time to get themselves into a safe position. This means that not only are you safer but you’ll have more confidence to have a life outside your home. Read more here: https://epilepsysociety.org.uk/living-epilepsy/wellbeing/safety-and-risk/seizure-alert-dogs#:~:text=Seizure%20alert%20dogs%20are%20specially,train%20your%20own%20pet%20dog Thank you so much Nicole <3 ------------------------- Epilepsy is a neurological disorder in which brain activity becomes abnormal (imbalanced) causing seizures or periods of unusual behaviour, sensations and sometimes loss of awareness. In order to be diagnosed with epilepsy one must have at least two seizures without a known trigger that happens at least 24 hours apart. To read more about epilepsy visit this [https://www.7cups.com/forum/DisabilitySupport_47/Events_201/EpilepsyAwarenessDayMasterpost26thMarch2022_274544/] post. ------------------------- To be added to the following tag list, click HERE [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/CallForApplicationsToBeInterviewed_276642/]. @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @Azalea98 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @exuberantBlackberry9105 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MilaAvery @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @TheResilientDancer @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WarmLightXO @WeedyGarden @wonderfulRainbow817 @xandia @Zarram77 @Zed786 ------------------------- If you're interested in interviewing/ being interviewed, please fill this interest form [https://forms.gle/W9MJEH7F9oSz5MpJ9]. Thank you!

RoundTable Discussion: What Can Be Done To Make The Rooms More Inclusive?

Disability Support / by MyNameIsNicole

September 15th, 2022

...See more Hello everyone! From the last post in this series, I gathered that sometimes the rooms are not always inclusive, even if it's unintentional. A friend of mine has shared how he often feels confused on what's going on in the rooms- and sometimes it can feel as if he's being unsupportive. Personally, I find that the rooms can be moving really fast and it's hard to keep up sometimes. Luckily, I can always lurk until I feel ready to jump into the conversation. I'd like us to discuss this, have you ever felt excluded from the rooms before? If you have, what could have been done to make you feel included? Even if your solution might seem impractical, or difficult to implement- do not worry. I just want us to share our opinions! Disclaimer: If you have any issues in the rooms, or would like to report something; please see the report forms: Member-Member/Listener Report Form [https://docs.google.com/forms/d/e/1FAIpQLSffQk1RhknozmquuEYiE_fZDp2ynNz-VB4XXBbRrrKmV57V5w/viewform] Verified Listener Behaviour Report Form [https://docs.google.com/forms/d/e/1FAIpQLSfjcw7Q1XPgowjQLrOFvjcHGIwwc0vSzwXJt16qTlx80J6zVQ/viewform] Tagging: @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @agreeableTurtle1021 @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @DichotomousDetia @disneymoonlight @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 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @theboymoana @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WeedyGarden @wonderfulRainbow817 @xandia @Xisle @Zed786

WarmLightXO Sheds Some Light On PCOS

Disability Support / by MyNameIsNicole

July 6th, 2022

...See more Hi everyone, it has been sometime but we're back with another interview with a spectacular person who is always helpful and kind to everyone they meet. @WarmLightXO is an excellent leader, a great friend and a beautiful soul. He leads the Living With Leaders [https://www.7cups.com/forum/CommunityProjectsEvents_184/LivingwithLeaders_2290/] interview series and has been going such a great job. I hope you enjoy reading as much as I did❤️ ------------------------- Polycystic ovary syndrome (PCOS) is a hormonal disorder that affects over 10 million people in the world. It is marked especially is usually initiated by an elevated level of luteinizing hormone, androgen, or estrogen which results in an abnormal cycle of gonadotropin release by the pituitary gland. (Source:https://www.pcosaa.org/) ------------------------- Q: Hello Elliot, it’s so great to speak with you today. You’ve been a reader of the inclusivity diaries for quite some time now, what strikes you most about the series and the people interviewed? Hi hi, thanks for having me! Yes, I remember when this series started and it’s one of my absolute favorite interview series. Every time a new interview comes out I learn something new about my peers and different disabilities, impairments, and chronic conditions. Education and inclusivity are d definitely values of mine so I majorly appreciate this series and the lovely people involved 💚 Q: What are things you thought you knew about PCOS but were debunked after you got your diagnosis? Ooooh a lot of things hehe. First, and this is a big one, I thought you had to have ovarian cysts to have PCOS. That is indeed one of the symptoms, but it isn’t a requirement for diagnosis. I also thought only females could have PCOS! As some of my close friends know, I’m intersex, so it was definitely a shocker for me to learn that it was possible for non-females to have PCOS. Q: What symptoms or signs did you notice that made you go in search of medical advice? The biggest thing for me was my lack of a menstrual period over the last six years. I’ve also experienced intense cramping, and about two years ago I started gaining lots of weight for no apparent reason, and that was when I really started searching for an explanation. Q: How long did it take you to get an accurate analysis of your symptoms? About six years, which may seem like a long time, but the average diagnosis time for PCOS is five years. I went to dozens of doctors who all told me there was nothing to be worried about and suggested I take birth control to regulate my hormones. Several months ago I visited a new doctor who diagnosed me almost immediately and started a treatment plan. I’m beyond grateful for her💚 Q: What are your opinions on the processes of getting a diagnosis or receiving treatment based on how long it took you? I should specify first that I’m American, and the healthcare system here is not designed to benefit the patient. It was a very difficult, exhausting process as I kept telling doctors that I was uncomfortable with my symptoms and they kept brushing it off. It’s extremely disappointing when you entrust a medical professional with such personal concerns and they act like you don’t know what you’re talking about. With that said, my current doctor is wonderful and I’m very glad I kept trying. Q: What advice would you give people who are struggling with getting proper medical testing and are being turned away from healthcare professionals? Trust yourself. Keep trying. Fight for yourself and your health. You know yourself and your body, and as discouraging as the process can be, you are worth the time and effort. It can take time to find the right professional for you, and you are worth this process. And if you ask for a test to be run and they say no, tell them you want their refusal noted in your chart. This usually changes their minds. Q: When it comes to PCOS, what do most people not understand about it? (misconceptions, generalizations and stereotypes) The biggest one that comes to mind- when people get diagnosed with PCOS, people tell them to lose weight. Not only does this disorder make it incredibly difficult to do so, there is absolutely zero evidence that it will help with the disorder. Another one, people with PCOS are not necessarily infertile. Plenty of people with PCOS are absolutely capable of having biological children. It’s not a rare disorder. Somewhere between 6%-26% of people worldwide have PCOS, which is between half a million to two people. It’s the most common endocrine disorder. Q: What has been your support system during the period of you trying to get a diagnosis up until now? My mom has been a lifesaver. When trying to find a doctor, she was the one who kept advocating for me and reminding me to keep trying. My doctor is phenomenal, she listens to me and my experiences, and my opinions matter to her. My therapist is one of my favorite people on the planet, she has written so many letters to doctors and encouraged me to stick up for myself. And my cousin who was diagnosed with PCOS just a few months before me has been a major source of education and comfort. Q: What are the things you struggle with in your daily living because of PCOS? My hormone levels are constantly changing and never quite right, which means I struggle with acne, excessive body hair and random irritability. I have to take huge pills twice daily to keep my cysts from bursting. My cholesterol and insulin are constant struggling, and I'm at high risk for diabetes and heart disease. I’ve also had multiple miscarriages, and my weight can fluculate 40 pounds either direction in a month. Although I don’t have a menstrual period, I have cramps about two weeks each month which I have to plan my schedule around because they can become crippling. Q: What adjustments or accommodations have you made to your lifestyle because of PCOS? I try to remember to take my medication, eat more fiber, and do strength training a few times a week. My biggest adjustment and suggestion is to reduce stress as much as possible. For people who have ovarian cysts, stress can make them inflame and possibly burst, which is obviously not something we want. In general, I would say I’m especially gentle with myself, especially when I experience bad cramping or increased depression. I think it’s really important to remember that you know your body better than anyone else, and the accommodations you’ll make for yourself are not the same as anyone else’s. Q: In your opinion, does the media portray the symptoms and manifestations of PCOS accurately? Although it is a very common disorder, I don’t remember ever seeing it in the media. Q: Has it been difficult managing the conditions that come with PCOS and in what ways? At times it’s been difficult. Like I mentioned, PCOS brings high risk for other problems such as extreme weight gain, diabetes from insulin resistance, heart disease from high cholesterol, constant brain fog, skin and hair problems, depression and anxiety, insomnia, headaches and infertility. I’ve come to peace with these struggles and do my best to take care of myself, so I’d say the most difficult thing has been weight stigma when people don’t understand why my weight fluctuates so much and give unsolicited, inapplicable advice. Q: How has 7 Cups been a sense of community and support to you? When I very first got diagnosed, I needed to not think about it, so my 7 Cups responsibilities were a welcome distraction. After taking some time to process, I was ready to learn more from others, and was able to chat with people experiencing similar things. Q: Would you like to add anything else? Being diagnosed with PCOS is daunting. It’s a big diagnosis and can feel shattering. It is going to be okay. You are going to be okay. 💚 Thank you for sharing Elliot. It is important to have conversations such as these, and to present an accurate representation of PCOS without stereotypical assumptions (as it can be different for everyone). Your contributions are greatly respected and valued. ------------------------- To get involved in this series, see this POST. [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/CallForApplicationsToBeInterviewed_276642/] It also contains the current tag list which you can visit to be added/removed. Tagging: @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @Azalea98 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @exuberantBlackberry9105 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MilaAvery @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @TheResilientDancer @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WarmLightXO @WeedyGarden @wonderfulRainbow817 @xandia @Zarram77 @Zed786 ------------------------- Thank you for reading💛

RoundTable Discussion: Group Chats vs Forums

Disability Support / by MyNameIsNicole

July 30th, 2022

...See more Good day everyone. I have been on a break for sometime, but I am back. I wanted to introduce a way our community can come together and communicate, apart from during events in the rooms. So this initiative will be called 'RoundTable Discussions' and it is inspired by @ASilentObserver. It is a way we can discuss several topics and share our opinions on matters. Today's discussion is, Which do you prefer, Group Chats or The Forums? I have a friend with an intellectual disability and he sometimes struggles with the fast pace of group chats. Of course sometimes the group chats may not be very inclusive and sometimes people may not be willing to explain things to him. For this reason, I think the forums are a place where he can share his feelings without feeling rushed. I relate with this too as sometimes I get overstimulated by how fast conversations are and even by the clicking of my keyboard when I type. So the forums are always a safe place to rewind and I have time to write my thoughts without feeling rushed. I'd like to ask, do you prefer the group chats to the forums or the forums to the group chats or even both? I'd also like to hear your reasons. Tagging members of the disability community, @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 @Xisle @Zed786

Tendonitis and Misdiagnosis: Rachel's Experience With Chronic Pain

Disability Support / by MyNameIsNicole

June 12th, 2022

...See more With another beautiful Wednesday comes another interview with an extremely beautiful person. As the ambassador for the verifier listener community, you may have seen her around 7 Cups a few (thousand) times. Thank you to @rachsxo for this wonderful opportunity to spend time with you and to all reading, please enjoy❤️ ------------------------- Q: Hello Rachel. Thank you for taking time out to talk to us today. Why did you choose to share your experience with chronic pain via the inclusivity diaries? A: Hello, thank you so much for allowing me to share my experience! Chronic pain is often an invisible disability that can affect people of all ages and activity levels. I share my story hoping to encourage others experiencing a similar situation to keep looking for answers and keep fighting until a solution is reached. Q: May you give us a brief summary of the condition you had that caused you chronic pain? A: I suffered from extensor carpi ulnaris tendonitis due to overuse that led to chronic tendon degeneration. Essentially, one of the tendons in my dominant wrist became inflamed because I had been using it too much – at the time of my first flare up, I was studying American Sign Language, playing piano, competing in dance competitions, and taking two lecture style classes taking notes entirely by hand. Each treatment that my doctors tried only seemed to be a temporary fix which led my tendon to slowly fall apart over the course of three years. Q: What were the challenges you faced suffering from tendonitis before you were able to get a correct diagnosis? A: Throughout this time in my life, I was unable to do many things that I love. I couldn’t go full out in my dance practices, couldn’t play piano at all, and was the only student in my high school using a computer for notes and assignments which led other students to make up rumours about why I was seemingly getting special treatment. After dealing with a relatively simple injury for so long, I frequently wondered how many more diagnoses and treatments I’d go through before finding an answer. There was a point when my pain was at its worst that I started falling behind in school because I was unable to type notes for my classes, and I became very depressed and withdrawn because I let my pain consume me. Q: How long did it take to get an accurate diagnosis, and how did it happen? A: Technically the tendonitis diagnosis only took one month, however, the treatments that my doctors attempted were only temporary. Because of this, I was misdiagnosed to the point where it felt like my doctors were only guessing and hoping they’d get lucky. It was not until three years later that I was finally diagnosed properly. Q: During this period, you were also a student in the university. How did you manage coping with school, and what adjustments did you have to make? A: Both my high school and my university were very accommodating to me. As I had briefly mentioned earlier, I was the only student allowed to use a computer when other students were required to write notes, assignments, and exams by hand. When I got to university, I registered with disability services and had access to notes from a student note taker. I was also able to use a computer for long exams and was given extra time as needed. The height of my pain occurred in my third year during which my professors would send me their notes and would routinely check in with me to make sure that I had not missed anything. I also had a great relationship with the department head of my program, and she was willing to move heaven and earth to make sure I was doing okay academically, physically, and mentally. Q: Were there any treatments available to cure or alleviate the condition, and did you have access to them? A: I endured many treatments for my condition – occupational therapy, cortisone injections, numbing injections, ultrasound therapy, and many more until I finally received a surgery called tendon debridement & tubularization, meaning that the damaged tissue was removed and the remnants of my tendon were sewn back together. Q: What support did you receive or would have liked to receive from people during the period of seeking treatment? A: I found a great support system in many of my university friends. All I asked was that people would not dismiss my pain and would hear me when I would say I was suffering, and they did all of that and more. My friends were just as excited as I was when I told them I had finally gotten a correct diagnosis and celebrated with me when I was officially cleared by my doctors. Q: Would you say you have a better understanding of chronic pain, and the people who live with them? Why? A: My experience is unique in that my injury has been almost completely surgically repaired with only some range of motion problems and residual nerve damage that will go away slowly over time. Millions of people suffer from chronic pain with no permanent solution and can only rely on temporary relief to some degree. It takes such a strong person to keep pushing forward despite their body betraying them. I don’t know if I could ever have the strength to be one of those people, but I deeply admire them for their perseverance. Q: What would you like to say about the healthcare system in your country, in respect of how long it took to get adequate treatment? A: In regards to the time I waited to get adequate treatment, I did lose a little bit of trust in my country’s healthcare system. With each incorrect diagnosis, I felt as if I was being dismissed in the hopes that I’d stop coming back. I couldn’t help but think that this was happening to me because I am a woman, or because I am young and was looking for attention. When I finally received my diagnosis, one of the first things my doctor said to my mother was “she’s not making it up!” I have never shared how much hearing my doctor say that affected me, but I find myself thinking about it often. Q: What would you have wished they had done better? (the healthcare system, medical practitioners and other medical staff you encountered) A: Many of the procedures I endured were in response to a diagnosis that my doctors knew was incorrect. I received a cortisone injection for what my doctors initially thought was a triangular fibrocartilage complex tear even though an MRI had not shown anything of the sort. While I appreciate them for trying, I wish I had not endured a painful procedure for a condition that the doctors were well aware I did not have. Q: Thank you for sharing your experiences. We would also like to know more about you (you’re pretty cool) and about your role on 7 Cups. How has the cups community helped you? A: I have interacted with countless people through being involved with 7 Cups who have all impacted my life to a great extent. I would love to give a special shoutout to my fellow Verifiers’ Team leaders & team members – they all do incredible work and have a huge impact on the quality of our listeners. I appreciate every single one of you! Q: How have you impacted the 7 Cups community in your own way? (doesn’t have to be anything big, you being here is more than enough) A: As the Verified Listener Ambassador I have made multiple changes to the Verifiers’ Team by streamlining the verification process and allowing more accessible methods of verification for people across all sorts of timezones. I have also brought multiple old projects back, such as the Wall of Appreciation and Verifier Discussions. Q: Has the disability support community been impactful to you in any way? A: Words cannot express how grateful I am for the Disability Support Community. About a year and a half ago I was heavily involved as a community centered moderator. Each person I came across, whether a listener or a member, was able to empathize with me and helped me keep pushing until I received a diagnosis. The leaders of the community at the time were a joy to work with and became mentors and great friends of mine. Neither of them are active anymore, but I wish them both the very best. Q: What’s your music taste like? Give us five song recommendations :) A: Excellent question! My favorite song of all time would have to be Hawaii by Evan Roman, but some of my current favorites are Birds By the Sea by Banks, The House of the Rising Sun by The Animals, Gulf by Emawk, and Rapp Snitch Knishes by MF Doom. ------------------------- If you are interested in being a part of this series, either as an interviewer or to be interviewed, kindly fill this interest form [https://forms.gle/W9MJEH7F9oSz5MpJ9]. To join our taglist and be updated on new interviews, click HERE [https://www.7cups.com/forum/DisabilitySupport_47/InterviewSeriesInclusivityDiaries_2386/CallForApplicationsToBeInterviewed_276642/]. @777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @amusingTalker1267 @Aqua1494 @Arsalanahmed @Ashleylovescats @AttentiveEar @audienta @Averayne93 @Azalea98 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @exuberantBlackberry9105 @fairmindedWater1140 @Fireskye13 @FrenchMarbles @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MilaAvery @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @pinkbunnywabbit @Pixiechu @placidMoth @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @TheResilientDancer @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WarmLightXO @WeedyGarden @wonderfulRainbow817 @xandia @Zed786 ------------------------- What did you think of this interview? Please share your thoughts💛

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