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AffyAvo
23 739,880 M Meaningful Journey 13
PathStep 2,719 Compassion hearts37,769 Forum posts9,541 Forum upvotes15,839 Current upvotes15,839 Age GroupAdult Last activeMay, 2024 Member sinceDecember 5, 2014
Bio

Pronouns - She/Her

I prefer to be called Affy, and will also respond to AffyAvo and Avo (although it can be confusing in group chats). Please no other hypocorisms or terms of endearment without asking my permission.

I'm married, in my 30s and trying to live well with hereditary angioedema and multiple other chronic illnesses.
I'm a scientist and am a believer in science based medicine, while being open to plausible medical treatments that have minimal evidence as that's a big point of having science - to find out what is true! I do see pseudoscience for what it is, mostly scams.


I am an IV drug user. I am tired of the stigma that IV drug users are addicts. I do IVs on myself (although preferably at least have a helping hand!) so that I can be a bit healthier. Learning to do this was a big challenge for me so I don't need anyone to dump on this.

This is a series of images of someone (not me) with HAE facial swelling, to show the type of swelling that I fear and deal with, although mine tends to be internal:
https://www.haeimages.com/shop/index/17

HAE is what brought me to 7 Cups years ago, but since then I have discovered I have other rare illnesses as well. Getting to the point of diagnosing some of these involved trauma from the medical system.


If you are supporting me, please do not misdiagnose me or suggest my illnesses are not real. Getting proper diagnoses has been exhausting and at times painful. I have seen many medical health professionals, including those who primarily deal with mental health so I do not need your inexpert opinion that my throat attacks are not actually HAE but rather are panic attacks - they AREN'T! Yes, living with multiple serious illnesses leads to anxiety. Anxiety that I experience does not manifest as symptoms of my serious illnesses.

Please forgive typos, I have medical issues affecting my vision and it's not consistent. I am using my phone instead of computer a fair bit when the computer screen appears to blurry and I make a lot of mistakes tapping on my phone.









Recent forum posts
Weekly Check In May 7 - 13
Disability Support / by AffyAvo
Last post
 5 hours ago
...See more [A gif of a dog running circles down a stream of water within a rut] Sometimes we can feel like we're stuck in a rut and while this dog seems to be having fun, being stuck can bring up a lot of negative emotions. Have you felt like you were stuck recently? What emotions do you tend to feel when you're stuck? What do you do when you feel like you're stuck in a rut? How are you doing this week?
World Asthma Day
Disability Support / by AffyAvo
Last post
 1 day ago
...See more May 7, 2024 is World Asthma Day Asthma is a chronic disease of the airways,  and causes increased mucus, inflamed and narrowed airways. This results in shortness of breath, coughing, chest tightness, difficulty breathing, wheezing and fatigue. Asthma, especially if poorly controlled may result in damage such as scarring to the airways. There are a number of know asthma triggers including dust, smoke, volatile chemicals, strong emotions, infections, exercise, humidity extremes, cold air, and allergens such as dander, pollen and foods. There are various asthma treatments. Someone may be prescribed one or more medications that helps control asthma long term and a medication that helps quickly with attacks, or to use before exposure to a trigger. Asthma awareness often focuses on proper diagnosis, having airway healthy environments and appropriate treatment including action plans for managing the condition. Those with asthma should be supported with recognizing when their symptoms are too frequent, severe or a fast acting medication is being used too often so they can discuss adjusting treatment with their physician. Asthma can take an emotional toll. An attack can be scary and may result in anxious about when one may occur. Someone may have to make changes to their home to reduce triggers. There may be grief related to a decrease in health, forgoing certain activities or limiting exposure to triggers. Asthma can also result in someone feeling isolated if they are not able to be where friends and family are or participating in the same activities. References: https://ginasthma.org/world-asthma-day-2024/ [https://ginasthma.org/world-asthma-day-2024/] https://asthma.ca/ [https://asthma.ca/] https://ablung.ca/lung-health/asthma/ [https://ablung.ca/lung-health/asthma/] https://www.lung.org/lung-health-diseases/lung-disease-lookup/asthma 1. How has asthma impacted you or someone you know? 2. How could you support someone struggling with asthma? 3. What is something you could do (or are already doing!) to help with a  healthy air environment?
Weekly Check In April 30 - May 6
Disability Support / by AffyAvo
Last post
 10 hours ago
...See more [A young Justin Timberlake 'sings' (no sound) it's gonna be may] Mother Nature has decided to set up a blank slate for the start of a new month with a blanket of fresh snow here. How is the start of the month going for you? What are your plans or goals for the month? Is there anything you are struggling with or would like to share here? It's been a while since I have posted this reminder - you are welcome to answer as many or as few of these questions as you want!
Weekly Check In April 23 - 29
Disability Support / by AffyAvo
Last post
 May 1st
...See more [A grey cartoon figure walks a tightrope] Source [https://pixabay.com/illustrations/sports-work-out-active-fitness-1013999/] Balance - It can be difficult for anyone to find the right balance in their life! Disabilities can make that even more complex. Is there an area in your life you would like to be more balanced? Do you have any tips to share with others on balancing factors in life? How are you doing this week?
Weekly Check In April 16 - 21
Disability Support / by AffyAvo
Last post
 May 1st
...See more [The arms of someone wearing a lab coat are seen and the person is holding up a plastic representation of DNA bases] Image Source [https://www.pexels.com/photo/crop-chemist-holding-in-hands-molecule-model-3825527/] There are so many different disability related awareness campaigns - whether it's about accessibility, inclusion or information about a specific condition. Disability Support will have a post for HAE Day soon! Do you feel connected to any awareness campaigns? If not, is there one you would like to see? How are you doing this week? Is there something you would like some support with?
Weekly Check In April 2 - April 6
Disability Support / by AffyAvo
Last post
 April 7th
...See more [A rainbow infinity symbol with #positiveAutism written underneath] April 2nd is World Autism Awareness Day. The UN started this day in 2007, and what started as a day to bring awareness and education about autism, it has since evolved to promoting acceptance. "From Surviving to Thriving" - https://www.un.org/en/observances/autism-day [https://www.un.org/en/observances/autism-day] Here at 7 Cups we have an Autism Support Community [https://www.7cups.com/forum/autism/], and neurodiverse people are welcome in Disability Support as well. We all have socializing preferences and sometimes autism or disabilities may be a factor with those preferences too. If you were to have an awesome day with your friends or family, what would you plan to do? What are your goals or plans for April? How are you doing today?
Interview Diaries: Living with Cerebral Palsy
Disability Support / by AffyAvo
Last post
 March 31st
...See more Hello everyone, this is an interview about ‘Living with Cerebral Palsy’ as part of the Cerebral Palsy Awareness Month of March. Our interviewee has requested to remain anonymous during this interview and because of the importance of this discussion about CP we are happy to accept. Thank you for taking the time to answer our questions so we may better learn and understand what it is like to live with Cerebral Palsy (CP) every day. It is our pleasure to find out more. * Can you tell us about how and when you were diagnosed with CP? I was diagnosed with Cerebral Palsy at the age of 3, after my mother noticed delays in my motor development. This diagnosis was attributed to a lack of oxygen to the brain at birth, which occurred when I was born prematurely at 6 months and weighed only 3 lbs. 2 oz., and had to be resuscitated. * How has CP affected your life since then? CP has affected my life since then by limiting my mobility on my left side. However, it has not taken away my ability to enjoy my life. CP has its perks, such as getting in line for a roller coaster and experiencing the unique perspective of CP through concerts and VIP passes. I view it as a gift, as it allows me to see the world from a different perspective. And it has given more stories to write as a writer.  * What are the worst parts of having CP? The worst part of having CP is the lack of understanding from medical professionals, which can make seeking treatment challenging. Additionally, having CP can sometimes lead to days where symptoms flare up and cause immense discomfort, making it seem like CP is having a party in your head. * How can we help to support someone with CP? Supporting someone with CP involves acknowledging their challenges and providing the necessary accommodations. It is important to avoid making assumptions regarding their feelings and coping strategies, as everyone's journey is unique. It is crucial to avoid falling into the trap of inspirational porn and internalized ableism, which can perpetuate unrealistic expectations and judgments. * What else would you like to share with us about your life with CP? When you read that you are in English class and you have read "Pride and Prejudice" by Jane Austen, you might initially expect it to be boring. However, as you delve deeper into the story, you realize that it seamlessly integrates with your own life, captivating your attention and making it almost impossible to put down. That's what living with CP is like; a book with many lessons to be taught  Thank you for answering our questions, it has been really interesting and a pleasure to find out more about living with Cerebral Palsy. For anyone interested in being a part of this, there is a form https://forms.gle/MZ1df1FWtJYHQvuy9 [https://forms.gle/MZ1df1FWtJYHQvuy9]  to express your interest in being interviewed as well as volunteering to interview someone else. Catch up with other Interviews Here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/InterviewSeriesMasterList_292976/] in our Master List! Want to join the Disability Support Community Team? Find out more Here [https://www.7cups.com/forum/disabilities/CommunitySpace_227/JoinTheDisabilitySupportCommunityTeam_325009/] Add or Remove yourself from the taglist here @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 @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 @OneErased @PerfectHarmony10 @philosophicalAcai7803 @pinkbunnywabbit @Pixiechu @placidMoth @Plantsaremybestfriends @Poppia @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @reservedCat9143 @RiggsMortis @sabeyesofblue3535 @Seachele @SmolBurrahobbit12 @SparklyCat @specialPurple1582 @StarsOrchidsOwls @stuffiessytem @sunshinegiraffe123 @theboymoana @TimidBear @TomatoEmi @turquoiseHemlock900 @u2canwin @wahmbrenda @Walker7957 @WeedyGarden @wishfulWillow6962 @WishUponAStar968 @wonderfulRainbow817 @xandia @Xisle @Zed786
Weekly Check In March 19-25
Disability Support / by AffyAvo
Last post
 March 23rd
...See more March 21st is World Down Syndrome Day, chosen because Down Syndrome is due to trisomy (3 for March) of the 21st chromosome. Assume That I Can is a campaign for this year Content Warning for video - alcohol and sex Do you relate to the Assume I can Message? Are you challenging yourself with any goals or tasks this week? How are you doing this week? We are also currently celebrating Cerebral Palsy Awareness Month! You can check out this information post here [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/ComeandLearnAboutCerebralPalsy_325813/] and keep an eye out for new threads.
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