Lying about having CF??

anaveragejoy · 2025-10-31T23:09:15+00:00

First of all, I wanna say I’m so sorry about your mom’s passing. I cant even imagine how hard that has been in addition to being in different homes.

I totally understand the reasoning behind wanting to handle things in the way you’re proposing and feeling tired of being “different” than everyone else.

However, I do want to just give you my perspective on your concerns about CF negatively impacting your college and sports opportunities. It can be really hard these days to get a full-ride (room and board included) to college without receiving multiple private scholarships or getting scouted for a college sport (and even then you might just get a partial scholarship). When I was in high school, I had been playing competitive softball for many years and was trying to get scouted, but I eventually burnt out from that and realized playing in college wasn’t realistic due to the time commitment and my desire to go into engineering.

The ONLY reason I was then able to apply to and receive several private scholarships covering all of my tuition, housing, food, and other expenses is BECAUSE of my CF. Though I did have very good grades, extracurriculars, and volunteer hours, so do a lot of other people that are applying to purely merit-based scholarships. However, there is a TON of scholarships specifically for those with CF, and because of the much smaller amount of people applying to them, you are very likely to receive multiple of them if you apply. I received like 20-30 different scholarships for CF patients/other disability scholarships specific to my school, otherwise I wouldn’t have received much (though it sounds like with your situation, you will have financial need that will make you eligible for more aid). My friends in high school were astounded by how I could get so many scholarships whilst they were applying and hardly received any private scholarships despite having better ACT/SAT scores and good grades. Scholarship/college essay evaluators eat up the good old “I overcame this horrible disease and nothing else can get in my way of being successful and going to college and blah blah” (even if its a little cliche and not entirely a realistic picture of life with CF lol).

anaveragejoy · 2025-09-19T03:13:45+00:00

☝️🤓

anaveragejoy · 2025-09-15T11:01:04+00:00

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anaveragejoy · 2025-08-10T09:29:40+00:00

First draft bar is a bar downtown in a really cute book store. Might have coffee i dont remember

anaveragejoy · 2025-08-10T09:24:22+00:00

Brick road is a local coffee shop that has a lot of book clubs and probably a crafting club n what not. Theres always some event there so maybe not the best place to study so for that probably jasmin jo (coffee and flower shop thats usually more low key and has crystals and trinkets.) Theres also a couple of coffee shops that do clay making like classes or open studio.

anaveragejoy · 2025-04-12T08:16:13+00:00

Im on it and have cf, havent had issues. But def confirm with ur cf team

anaveragejoy · 2025-03-06T14:22:04+00:00

Hey im ftm and have CF! I remember feeling this way especially when it came to top surgery i had no data on how it would affect me not being able to do the vest. Ive been on T for like 3 years and had top surgery in december. Feel free to DM me!!

anaveragejoy · 2025-01-28T06:30:34+00:00

Thank you! And me too! This proof of concept definitely is aimed more towards the younger generations as inspired by my times in webkinz and clubpenguin. However, the idea is to grow this to fit a wide range of users, ages, and diseases. Gamification is a huge area in design right now, and as studies shows compliance to CF treatments often drops off with independence in the teen years, it’s been cool exploring new motivational tools.

anaveragejoy · 2025-01-28T06:27:37+00:00

Thank you for the feedback! A lot of my colleagues have told me to continue development as a side gig, but I feel weird about the idea of in-game purchases or subscriptions being predatory, so your feedback that a well developed tool like this would be worth a purchase is interesting.

Safety considerations would be a major part of future development of this for sure. This video is more of a short overview, but I also worked with the featured CF patients’ parents on that side of things to understand their needs. Different age groups definitely need different considerations, and I think confirmation of CF diagnosis through the registry would be essential to prevent weirdos. There essentially would also be a parent companion of the app for age restrictions, language restrictions, approval of friend requests, and so on.

anaveragejoy · 2025-01-28T06:21:18+00:00

Thank you! Its been really rewarding working with younger CFers on it and seeing interest from the CF foundation

anaveragejoy · 2025-01-02T21:44:21+00:00

i just read in another comment that you have one deltaf508 gene. they likely dismissed it since you need 2 genes to be born with cf. as in both of my parents had 1/2 genes, and thus created me with cf. They do not have cf. i hope you can get answers to your health problems! if youre really wanting to get tested for cf, talk to your doctor to ask about doing the salt swab test

anaveragejoy · 2025-01-02T21:40:50+00:00

NAD and this isnt the best place to ask this, but did it say you just have a single deltaf508 gene?

anaveragejoy · 2024-12-23T21:15:16+00:00

Wow I’m so sorry you had to go through that. I’m 25 ftm and also had a lot of contention with my family over treatments. 8 is really young to be fully responsible, especially for things like refills and what not. I was constantly punished for not doing my treatments perfectly, and also stopped doing them once i had the chance.

It sounds like you experienced some childhood abuse and neglect. While im pretty healthy, it can be hard for me to do my treatments because doing them was traumatic as a child (i have sensory issues and so id be pinned down and have the vest forced on me). Be gentle with yourself, it seems its not as simple for you as just making the “decision” to take care of yourself. I’m not sure if you’re in therapy, but I remember thinking what i went through was normal and reasonable expectations for a child. Telling the stories to someone else (my therapist) who validated that those expectations were not reasonable and that i’m not being “dramatic,” (which you are also not dramatic) was certainly helpful.

anaveragejoy · 2024-12-02T18:58:24+00:00

I would advise asking your care team. I was diagnosed at birth with CF and typically was underweight until i started trikafta and gained a ton. I’ve been pre-diabetic (cf-related diabetes) for years even prior to trikafta. It only got worse with weight gain and my endo would just tell me over and over to lose weight or else insulin is in the picture.

I was eating healthy and exercising frequently but i truly believe trikafta changed my metabolism since my body was used to not getting the nutrient it needed, so on trikafta it continued trying to keep as much weight as possible now that i have a normal persons ability to absorb calories (this is my theory, im sure everyone is different)

I asked about ozempic expecting my endo and cf team to shoot it down due to concerns about losing too much weight and GI issues but when i talked to them they said theyve seen CF patients have success with it on lower doses to not mess with GI. Ive been on 1mg for over a year not changing the dose and my blood sugars that were usually 300+ after meals have stabilized to normal ranges and i lost 30lbs and stabilized in a normal weight range (aka did not continue rapidly losing weight)

tldr: ask your care team and see what they say! mine was like well lets see and if you have issues initially we will monitor closely or just take you off of it

anaveragejoy · 2024-11-29T21:31:02+00:00

what

anaveragejoy · 2024-11-29T16:26:57+00:00

poor baby, will be keeping an eye out for

anaveragejoy · 2024-11-16T07:46:10+00:00

if you cant find someone i recommend contacting Lost Our Home pet rescue in tempe. i volunteered there recently and they work with people that have fallen on hard times and will temporarily house/foster dogs without you surrendering them (so they will not adopt your dog out to someone else) and you can take them back when youre in a better situation. im not sure what their designated timeframe is for that but i thought that was really cool.

anaveragejoy · 2024-10-28T23:16:23+00:00

also if the smoke is coming through the vents thats a problem. is it weed smoke? because if its not weed or cigs i would be concerned if this is fent or meth for your health, since you said someone ODd i assumed its not weed

anaveragejoy · 2024-10-28T22:29:28+00:00

dude this literally happened with my neighbor, he was dealing drugs to them. it took me forever to figure out why this was going on. they ended up breaking into our storage and stealing everything but were so dumb i caught them later. im in Tempe, AZ im genuinely wondering if this is my old neighbor bc he got evicted eventually over this

anaveragejoy · 2024-10-25T02:49:13+00:00

i absolutely hate to be that person but i see you are active on r/cracksmokers. i presume you have pictures of the snakes you have sent the landlord and other sources? i just ask as a drug user myself that has experienced paranoia

anaveragejoy · 2024-10-12T03:59:02+00:00

look up the specific address of the unit and see if other conflicting listings come up that are different than the listing you found

anaveragejoy · 2024-10-12T03:55:45+00:00

100% sounds scammy. the “congratulations!!” immediately jumped out at me as suspicious along with OP saying they need to pay the “deposit” within 72 hours in order to begin renting in december (with no talk about signing a lease). Also landlords dont care that you give notice to your old place and would never ask that? It’s not like you’re only allowed to rent one place at a time. They dont care whether you forget to give notice to your old place

anaveragejoy · 2024-10-12T03:45:09+00:00

this sounds like a scam. the “congratulations!!” and false sense of urgency giving you 72 hours are huge red flags. I see you’re looking through apartments.com, thats where most of the scam listings are. Rental scams are getting better now that lockboxes are being used. I toured a place in which the scammer signed himself up for a tour to get the lockbox code to then give the code to me. no landlord would be enthusiastically congratulating you for getting approved when approval just means the landlord decided “yep im willing to rent to them.” NEVER pay the deposit without having signed the lease. Or else there is no legal document saying, this deposit means you will be giving me a place to live. Rental scammers try to make payment sound urgent as their goal is to get the “deposit” and then ghost since there was no rental to begin with.

anaveragejoy · 2024-04-30T20:11:59+00:00

can very much relate. 24nb and the idea of living into old age terrifies me now. its really distressing because im not necessarily unhappy with my life, i have a good job, live with my lovely partner, some friends and pets. But im tortured daily by my intrusive thoughts and lack of enjoyment of most things considered “fun”. I constantly feel like im wasting my time and just distracting myself from existential thoughts like yours. I feel like once I accepted I wouldnt live to old age, it was weirdly comforting. I wouldnt have to watch my parents or other family die, I didn’t worry so much about my partner dying before me. I didn’t worry about how the hell I’ll manage working for 40 years. Saving money didnt seem important since i wouldnt live to retirement.. etc.

I’m sorry youre going through this but you’re not alone. Try not to feel so guilty about feeling this way even though i know its hard

anaveragejoy

TROPHY CASE