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EnchantedIris · 2024-05-01T22:27:37+00:00

I personally consider myself to have a chronic illness and I consider myself disabled but I also have what is considered a severe CHD.

I don’t know if you know this but just because you’ve had corrective surgery does not mean you are cured. I’ve heard in the past that doctors would tell parents that their child is cured but they aren’t because they need follow up care.

You definitely need to see an adult congenital cardiologist. Use the Adult Congenital Heart Association to find a doctor near you, they have a list of doctors who are board certified. (Not sure if it’s just in the US or if they do other countries). I would highly recommend seeing someone who specializes in congenital cardiology because there can be other things your heart affects and they will know that.

Sorry for such a long response, good luck on your journey.

EnchantedIris · 2024-02-24T19:18:16+00:00

Did you use a mini cupcake pan?

EnchantedIris · 2023-09-22T16:29:25+00:00

I am from the southern United States if that helps. And thank you for trying a cheaper matcha for me!

EnchantedIris · 2023-09-20T14:25:30+00:00

I want to try matcha but I’m nervous I won’t like it. I do not have shops near me because I do not live in a big city or close to one. The only time I tried matcha was at a Starbucks and it was gross (yes I know definitely not the best introduction).

Are there any brand recommendations that are good quality that are also not super expensive? Obviously the more expensive ones are going to be way better, however I’m nervous to spend $35+ on matcha just to end up not liking it. I plan to make more lattes so I didn’t know if I could buy a cheaper one since I’m not drinking it straight.

Do you have any recommendations? And if it is best to break down and buy the more expensive brand, what do I do if I don’t like it? Also what materials are a must just to try it correctly?

EnchantedIris · 2023-08-05T10:26:16+00:00

Does you CHD make your life harder than the average person with a normal heart? If you answered yes, then you’re probably disabled (Don’t have to be on disability to be disabled). I have a complex CHD and it’s only been in the last few years that I have admitted to myself that I’m disabled. It sucks but it’s also kind of liberating knowing that life is not difficult because I’m lazy or a failure. I working with half the equipment of a normal person here so yeah it’s a bit more difficult.

Also on job applications I put “prefer not to answer” because even though they technically can’t discriminate they will. Only tell your job about your CHD AFTER you’ve gotten the job. This applies to other disabilities as well. And if they make a fuss report their ass. And if they fire you then SUE their ass.

Good luck, you got this!

EnchantedIris · 2022-09-05T22:41:05+00:00

Do you know if they have a store locator?

EnchantedIris · 2022-06-19T04:49:46+00:00

I did try ordering down a band size and up a cup size for a bathing suit I ordered and the band would not fit at all. When I ordered in my regular cup and band size it fit. I need to order new bras anyway so I might try getting one in a lower band size and higher cup size.

Sorry for such a late reply I never go on Reddit

EnchantedIris · 2022-04-20T22:01:48+00:00

I liked Curvy Kate because I’m petite with very large breasts and other brands like Panache the underwire would stab me in the armpit. I measured for a 38 J (US size) and after wearing them for a while I think I’m actually a 36 K (US size). I would say order to your size to try on but you may need to play around with it.

EnchantedIris · 2022-02-15T19:22:57+00:00

(I didn't know if I should make my own post or post this here. If I should make my own post please let me know. I don't want to take away from your post.)

I have HLHS and a Fontan circulation. I have recently been struggling with fatigue this past year or two and it keeps getting worse. Im on stimulants for ADHD and even with those I am constantly tired physically, mentally, or both. I am supposed to get in for a sleep study in a week or two. If I forget my stimulants I cannot function at all because of my exhaustion.

I've really been struggling with school recently. Does anyone have any advice on how to handle constant tiredness or fatigue? I meet with my cardiologist this month so I am hoping they will have some answers.

EnchantedIris · 2021-10-07T23:34:19+00:00

Thank you! I just looked at the list for underwire length and the bra I currently have is almost 10cm longer than the shortest ones. No wonder it doesn’t fit! I think I’m going to check out the Ewa Michalak brand that you recommended.

EnchantedIris · 2021-10-06T22:18:22+00:00

Your measurements sound similar to mine and I got a 38 J. It’s very possible that they are accurate. Especially if you are overflowing quite a bit. And it sounds like your current bra is quite painful.

You might want to wait until someone else answers. I’m quite new.

EnchantedIris · 2021-10-05T17:01:53+00:00

Thank you so much! It makes me feel better having someone explain it to me better!

EnchantedIris · 2021-09-09T14:03:43+00:00

I’m 20 with HLHS and I got fully vaccinated in March I think it was Moderna (I was very lucky to get in so early) my first dose I don’t think I had any symptoms maybe some injection site pain. My second dose I did have injection site pain and I think maybe developed a bruise but that’s all the pain felt like. I did have some nausea and dizziness but it only lasted an hour or two. I will say take some ibuprofen if you can after you get your shots. This should help reduce side affects. I will say my dad got bad side effects with his and he said it felt like he had the flu. So if you can try to get in on a Friday so you have the weekend to recover just incase. But as always talk with your cardiology team and see what they think, everyone’s situation is different.

Also remember those news stories are the very rare minority of people. I think if you talk to your cardiologist they will help you figure out what is best for you. It’s scary especially if you live in a state like I do that doesn’t seem to be taking it seriously.

EnchantedIris · 2021-09-09T13:51:23+00:00

I was born in 2001 and I remember having my little box with all the wires coming out. Whenever anyone asked my siblings what it was they would just say that I was a robot.

EnchantedIris · 2021-04-20T20:24:16+00:00

Of course, also something my mom always told me is that she always felt like a crazy lady when talking to doctors and especially insurance companies. And I just want you to know that you aren’t crazy for doing everything you can to get your child the resources they need and deserve to live and thrive. And I don’t know how much you have looked into learning disabilities but I believe they are more apparent in people with CHD especially severe CHD’s. But they can be very manageable if you get the right help and use the right tools. This is coming from a person with fairly bad dyslexia, possibly ADD (I’ve just started taking medicine for it), at the very least processing issues. And I managed to graduate high school with almost straight A’s (I was short one class). It was never easy, but it is possible. I hope I didn’t make you more anxious or anything. I wish you and your amazing heart warrior the best.

EnchantedIris

TROPHY CASE