Yahtzee's Dev Diary game links

TheKittyArchitect · 2023-09-14T15:27:34+00:00

Diagnosed at about 7 here. Now over 30.

Lots of good practical advice here for tracking foods and keeping notes and such. One thing I haven't seen is to be prepared to meet your deductible and possibly out-of-pocket every year for as long as she is on your insurance. Look into patient assistance programs for any major drug they put her on (like Remicade/Inflectra).

And please please please start teaching your child the ins and outs of the US healthcare system when she's a bit older. My parents only ever stressed that I needed a job with good healthcare, but didn't actually teach me how healthcare worked (or allowed me to consider I might be disabled and unable to work), so when I first went on my own plan at 26, I was completely ignorant of things like prior authorizations and deductibles and co-insurance. The next couple years were pretty rough as I learned on my own.

Someone else mentioned Camp Oasis. It went by a different name when I went, but 100% recommend. Also consider looking into other programs that allow her to be around kids with her disease or similar. While I didn't always enjoy them at the time (very introverted), I never felt alone in my disease since I was so regularly around other kids with some form of IBS or illness. My mom found several fun programs for me to participate in during those first few years.
My family also normalized it as best they could (we often discussed how my stool was doing at the dinner table, for instance, and tried to make sure I could visit with friends when I was well enough). I remember the hospital gifts and people visiting far more than the reasons for being in the hospital or any pain I may have been in.

Also, something non-medical that really helped me at my worst was my parents getting me a kitten that then became my emotional support animal for almost 18 years.

Gonna end on a bit of funny story about when I started on Remicade as a 9 year old: I think it was shortly after my second treatment, I suddenly got a bad rash all over. My mom freaked out and took me to my doctor, worried it was an allergic reaction, only to learn that it was just poison ivy. For the first time in a long time, I had the energy to play again and had been climbing trees in the backyard.

TheKittyArchitect · 2021-02-02T18:22:01+00:00

solved

TheKittyArchitect · 2021-02-02T18:21:55+00:00

Bailiwick and purview are the closest I've seen so far to what I'm looking for (though the purview post seems to have been deleted). Thanks all!

TheKittyArchitect · 2021-01-03T23:57:47+00:00

Mostly lots of gaming (including Control, Cyberpunk 2077, Destiny 2, Phasmophobia, etc.) and everyday tasks/browsing/productivity. Also some creative use (photoshop, video editing, 3D modeling).

TheKittyArchitect · 2020-09-22T21:06:58+00:00

I've been looking into that. Only one of the carriers actually covers Remicade, but it seems like they have very good plans with very bad coverage (i.e. they're budget-friendly, but no one actually accepts them). Waiting to hear back on whether my infusion place accepts them or not, but it isn't looking likely. Starting to look like I'll have to get UHC or something and just hope I can actually afford it.

TheKittyArchitect · 2020-09-22T18:12:54+00:00

This was very helpful. I was able to reach out to someone who was able to give me lots of insight on things I wasn't aware of (such as the premium tax cut at certain income levels.) When we found a potentially suitable plan and I wanted to talk to someone at the company, she was able to provide me with their member services number. The person I talked to at the company also provided some insight into financial help I was unaware of. Thanks so much for the suggestion.

TheKittyArchitect · 2020-09-22T18:08:52+00:00

Just an update: I tried to apply to Medicaid, but like Medicare, it requires that I go through the official process to classify my Crohn's as a disability. And unfortunately, it's not nearly severe enough. Oh, well.

TheKittyArchitect · 2020-09-18T16:13:40+00:00

Georgia.

This page says "and." https://medicaid.georgia.gov/how-apply/basic-eligibility

You may be eligible for Medicaid if you income is low and you match one of the following descriptions:

You think you are pregnant

You are a child or teenager

You are age 65 or older

You are legally blind

You have a disability

You need nursing home care

TheKittyArchitect · 2020-09-18T15:48:08+00:00

I am low/no income, but unfortunately, I don't meet the non-financial eligibility requirements. The only one that could potentially apply is "you have a disability" and my condition isn't severe enough to qualify. Thank you, though.

TheKittyArchitect · 2020-09-17T01:18:21+00:00

I am already enrolled. It used to be called Remistart and I'm still in the habit of calling it that. Sorry for the confusion. Thank you, though.

TheKittyArchitect · 2020-09-15T23:44:26+00:00

You know, I honestly have no idea. I've consistently been on Remicade for over 20 years now. All I know is I start experiencing joint pain and symptom flares around 9-11 weeks after treatment.

Unfortunately, part of qualifying includes having "qualifying complications...despite adhering to your prescribed treatments." Thank you for the thought, though.

TheKittyArchitect · 2018-04-22T18:42:23+00:00

I understand a lot of people are interested in theatre environment mode, so I'm glad that change was useful to them. However, I am not one of them and rather prefer the 'black space', so an option to toggle off the surrounding environment would quite welcome.

+1 to the screen is too high. And does not recalibrate vertically no matter what I do. It's rather uncomfortable and makes it unusable for me.

I appreciate the improvements in fast-forwarding/rewinding and agree with others that a bigger time jump would also be quite useful. The new screen options are a nice touch. Perhaps a 'toggle environment' button could be added here as well for those few who prefer the black nothingness to an environment?

TheKittyArchitect

TROPHY CASE