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AffyAvo
9 754,407 M Meaningful Journey 13
PathStep 2,719 Compassion hearts39,263 Forum posts9,903 Forum upvotes16,542 Current upvotes16,542 Age GroupAdult Last activeDecember, 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
December Check in with Us!
Disability Support / by AffyAvo
Last post
 7 hours ago
...See more It's the most wonderful time of the year 🎵 ... Or is it? [Snow falls, bright warm lights can be seen through the windows of a few houses] I think most of us who are disabled, have an illness or live with someone who is disabled find December challenging for one reason or another. There's a number of holidays, the end of the year, shorter/colder days in the north and longer hotter days in the south, etc. and these can all affect us. How do you feel about December and what's 1 challenge you think you're likely to experience/are experiencing this month? Share a tip you have to help manage that challenge? - If you don't have a tip please let us know if you are open to others offering suggestions. How are you doing today? A reminder - you are welcome to check in multiple times for the month and you can answer as many or as few questions as you like!
Listeners with a Disability - Supporting those with Disabilities (2024)
Disability Support / by AffyAvo
Last post
 7 hours ago
...See more We had one of these before, but many of the listeners are no longer using 7cups. So here's an updated one. Are you a listener with a disability willing to support others with a disability? Please share here! Also note what your disability is or give as much detail as you're comfortable wtih so that members can find someone with similar issues.
November Check In with Us!
Disability Support / by AffyAvo
Last post
 November 11th
...See more [A sheep pulls a carrot from a garden] With the end of October and the beginning of November, harvest season comes to mind. Canadian Thanksgiving has passed, American Thanksgiving is to come, Diwali celebrations are occuring and pumpkins are still floating around! I know other cultures have celebrations related to harvest too. What types of harvest celebrations do you celebrate? Do you face any challenges at this time of year? How are you doing today? You are welcome to pop in to this thread multiple times throughout the month and share the tough things and the good things this month.
Inclusive Trick or Treating
Disability Support / by AffyAvo
Last post
 November 4th
...See more More people are becoming aware about how to be inclusive to all Trick or Treaters this Halloween! [A gif where the lighting makes a pumpkin teal] Teal Pumpkin Project  When people put out Teal Pumpkins it means they have non-edible treats available. This started off as being a way to be allergy friendly, and this is also good for trick or treaters who have other dietary restrictions. For some good ideas and some more fanciful ones, check our the on-going A-Z game here  [https://www.7cups.com/forum/disabilities/CommunitySpace_227/AZtreathandoutsfortheTealPumpkinProject_262266/] Treat Accessibility Treat Accessibility offers tips to remove barriers to trick or treaters. Some cities have locations where you can pick up a sign [https://www.treataccessibly.com/free-lawn-sign-2024-version], plus you can print your own [https://www.treataccessibly.com/free-lawn-sign-2024-version] and set it outside before Halloween so people know ahead of time your house will be accessible/ Treat Accessibility also hosts  Halloween Villages - inclusive events for Trick or Treaters where all participating households are accessible. Blue Pumpkins Some families choose to use a blue pumpkin to indicate that their trick or treater is autistic. This may help create some extra patience for children who may have trouble communicating, aren't comfortable wearing a costume or may have additional sensory needs. Some households also put out blue pumpkins to indicate they are friendly households for these children. Questions If you're handing out treats or trick or treating, are you participating in any of these? Is there a Halloween Village near you? Share an accessibility tip for any household or trick or treater (hint check out treat accessibility [https://www.treataccessibly.com/how-to] if you're stuck) Bonus question - share a recipe we can use after carving those pumpkins!
Temperature Range
Around the World / by AffyAvo
Last post
 November 7th
...See more What temperature range do you experience where you live? Post in Celius or at least refer to F if using that. Here, in a given year a range of 66 is almost always reached and in the 17 years I have lived in this location I have experienced a range of 84. So 84. 66 is expected minimum in a year.
September Check In
Disability Support / by AffyAvo
Last post
 September 11th
...See more [Peanuts characters look off a dock, at the sunset while leaves swirl around them text states GOODBYE AUGUST Hello September] September can be a shift, some schools are full of people settling into new routines, the weather changes into a new season and pumpkins seem to pop up everywhere. Some of us are also cheering on the Paralympians (check out this post [https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/ParalympicsParis2024_335558/])! Are you experiencing and changes or stating something this month? What's a fun activity you are doing this month? How are you doing? Would you like support with anything?
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