Marie Kreil / is on Nostr

FOSS | Privacy | Infosec | Journalism | Co-Director Prototype Fund (npub1y8k…05lv) /Open Knowledge Foundation Deutschland | CCC Sticker Operation Center (npub1f8z…p9re)
- chronically offline -

Website: https://maryshi.ro
Prototype Fund: https://prototypefund.de
Sticker Operation Center: https://stickeroperation.center

Last Notes

2024-07-08 19:55:12

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But that doesn't make the loss of our data ok. Having private health information leaked feels terrible, and it is one more thing that makes me so angry and tired.
Every other step of navigating endometriosis is like fighting a structure that should be there to help people, but can't because there is no funding, because research in this area hasn't been a priority for hundreds of years, because fighting diseases that primarily affect women doesn't really matter.

2024-07-08 19:54:09

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How do I know that number? We were all in CC. All our email addresses disclosed to each other - and the fact that we have endometriosis. Some people like to keep that kind of information private.
I don't mind being public about it. I don't think we should hide a condition that affects so many of us.
The @npub16gp…7pmq team is probably overwhelmed with work. I assume that working under such conditions is not a good environment to learn additional skills like how to handle data.

2024-07-08 19:53:31

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My hope is that I am on a waiting list to get help from a specialized research center. I have been on this list since August 2023, when I was first told I would have to wait 3-5 months. After 7 months, I contacted the center and got a very dry copy-paste reply asking me to be patient.
Today the research center sent me and about 500 other patients an email that basically said, "Sorry you've been waiting, you'll have to wait longer, but you can come to a general information session."

2024-07-08 19:53:17

I have endometriosis.
Over the past few years, I have been through surgeries, countless doctor's appointments, hours of research, and tons of self-medication. For several months, I had daily cramps so bad that I often had to quickly find a place to sit down. I go through phases where my body can't tolerate food and others where my left leg mysteriously hurts. I've stopped counting the days I work from my bed because I feel like I can't call in sick anymore.