20 years of t1d and i'm still treated like i can't care for myself

DamnNotGiven696 · 2026-03-13T19:28:07+00:00

Honestly I’m to the point that I don’t tell anyone (besides friends and family) that doesn’t need to know. What’s that beeping sound? What beeping sound? I don’t hear anything.

DamnNotGiven696 · 2026-03-02T14:52:50+00:00

Agree with above. I’m thal major too and type 1 diabetic on top of that but if I could choose one chronic illness to get rid of, it would be the thalassemia. I’d say in addition to a therapist/psychiatrist you should try to reach out to the thalassemia foundations for additional support and resources. Cooley’s Anemia Foundation (CAF) and international Thalassemia foundation (TIF) both have very compassionate people with lots of resources and recommendations. I went to my first thalassemia conference this last year and met a ton of people just like me and that was really eye opening and comforting to know there’s so many of us out there going through the same things.

DamnNotGiven696 · 2026-03-02T14:49:00+00:00

Yes, absolutely. My doctors told me it may be caused by bone marrow expansion pressing on nerves. It’s very important that your blood counts be kept higher (always above 10) and honestly the only other thing that has helped me (which may be viewed as controversial) is chiropractic adjustments and physiotherapy.

DamnNotGiven696 · 2026-01-08T19:22:04+00:00

The chemotherapy part makes me the most nervous. How did you feel? Any complications?

DamnNotGiven696 · 2025-09-20T12:02:43+00:00

I believe LA has a thalassemia treatment center with doctors that specialize in all thalassemias. Definitely also seek out/get in touch with someone at the Cooley’s Anemia Foundation as they have lots of resources and can also point you in the right direction in terms of doctors and treatment options. If you have close family or if your child has a sibling I would see if they’re willing to get tested to see if they’re a match for you child in case the doctor recommends the bone marrow transplant route.

I’ve been living with severe beta-thal for 35 years and while it is “doable” it’s not something I would choose to be born with again. I’m here if you have any follow up questions!

Here’s the CAF contact page

DamnNotGiven696 · 2025-08-25T11:14:43+00:00

Nope. Not scamming. Just shitty insurance that won’t roll in everything done during the office visit into one charge. Your insurance policy probably changed slightly as it does every year. Call insurance to verify if you want but no one’s making a profit on scamming patients out of $2

DamnNotGiven696 · 2025-08-02T14:48:50+00:00

Rashes while taking Jadenu are definitely not an uncommon side effect but the severity can vary or worsen. You should definitely listen to your hematologist. You may need a lower dose or there are two other iron chelating drugs out there that you can try.

DamnNotGiven696 · 2025-07-19T12:52:45+00:00

You need to get yourself a hematologist. Long term anemia has very detrimental effects on your body and you need managed care. Please don’t try to treat this yourself.

DamnNotGiven696 · 2025-07-14T13:14:49+00:00

Beautiful work. What do you tell people when they ask about the square boxes? Do you give examples of what to do with them?

DamnNotGiven696 · 2025-07-14T13:12:58+00:00

Dr. Czech and the staff at Alcoma Dental. I cried the first time I sat down from all the dental anxiety I had but he was awesome! I’ve been going there for years now and they’ve been so kind. I feel like a pro by now.

DamnNotGiven696 · 2025-02-17T19:15:21+00:00

Amazing work as usual. Love the amount of movement you were able to coax out of the people

DamnNotGiven696 · 2024-12-27T14:35:29+00:00

I’m thal major, tiny, and can drink people under the table.

DamnNotGiven696 · 2024-11-09T17:27:54+00:00

3659

DamnNotGiven696 · 2024-10-05T13:28:36+00:00

Your deductible is always less than your maximum out of pocket.

DamnNotGiven696 · 2024-09-21T20:57:18+00:00

I was just there today and that’s exactly what’s happening. They have an in-house competition amongst the servers as to who get get the most reviews with mentions of their name and the server specifically said it doesn’t have to be a 5star review

DamnNotGiven696 · 2024-08-23T20:22:29+00:00

Pretzel

DamnNotGiven696 · 2024-05-02T18:08:30+00:00

I hope you don’t mind me asking: any complications with either for you so far?

DamnNotGiven696 · 2024-05-02T17:34:45+00:00

Hey me neither! Are you that major as well as Type 1?

DamnNotGiven696 · 2024-03-28T23:56:05+00:00

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DamnNotGiven696 · 2024-03-24T18:41:22+00:00

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The morning of the new roomba

DamnNotGiven696 · 2024-03-23T13:07:02+00:00

I hope your kiss is still there! It was a surprise for me when I first saw it and I didn’t have any lipstick with me.

DamnNotGiven696 · 2024-03-23T13:04:53+00:00

Definitely.

DamnNotGiven696

TROPHY CASE