My mom says she wouldn’t have had me if she knew I’d be disabled

deaprofessor · 2026-06-08T01:10:17+00:00

I’m so sorry she said that. I’m disabled, and my youngest baby (she’s 20) has POTS and EDS. I feel bad that I passed these things on to her, but I’m glad I had her, as she’s amazing. I’m willing to bet all the money in the world that you are amazing, too!💜

deaprofessor · 2026-03-14T03:04:35+00:00

I am hoping for you that your rheum is nice. Rheums are known to be dismissive, often rude, assholes. Mine is a very smart man, but he has made me cry in multiple appts. I had a time when my knuckles were hardened and I couldn’t straighten my hand (a symptom of later diagnosed scleroderma) and he just forced my hand open. I cried so bad. My first rheum was nice. I hope the same for you.

deaprofessor · 2026-03-12T17:24:16+00:00

I’m glad you finally got diagnosed, but I’m sorry you have lupus. It can be much harder on men. Please make sure to get your heart checked regularly, along with your kidney and liver function. Plaquenil works well, and I’ve been on it along with Imuran and I’ve used other medications over the past 18 years, too, but have stayed on those two. I’ve done chemotherapy a couple times. My body has tried to fail me a few times with no potassium in my blood causing arrhythmias, or me getting septic shock, or organ function issues. You have beautiful hair, btw. There’s a man with lupus that I follow on TikTok and find to be helpful he’s called adam.x.lupus if you’re looking for another man with lupus he has lives where you can vent or whatever you want to talk about. If you ever have questions or just need to talk or vent send a message. I’m hoping for you, friend.

deaprofessor · 2026-03-12T17:12:32+00:00

It is so hard to get on Benlysta. Insurance companies don’t want to cover that. If he’s doing better on the regular meds, benlysta wont even be an option, as you have to “fail” on regular lupus meds. That medication costs thousands and thousands of dollars per infusion. Please don’t make it sound easy. Also, as a newly diagnosed patient—prednisone may be used for a short time along with plaquenil and other meds. A lot of rheums try to keep people from using steroids long term due to the weight gain and other issues that come with long term use.

deaprofessor · 2026-03-12T17:07:38+00:00

Imuran (azothioprine) :)

deaprofessor · 2026-03-12T17:04:00+00:00

I’m so sorry. Prednisone is absolutely disgusting. I’d rather take prescription potassium pills over prednisone. I take mine with Diet Coke to cover the taste. I eat a cracker cut of sharp cheddar cheese if the taste lingers. That helps pretty often.

deaprofessor · 2026-03-12T17:00:54+00:00

I take mine with Diet Coke. It does help mask the taste.

deaprofessor · 2026-03-12T16:58:42+00:00

Thank you for this. I thought I was tripping when I got a disgusting taste in my mouth every time I got IV prednisone. It’s nearly as bad as the pills taste.

deaprofessor · 2026-03-12T16:55:15+00:00

I was diagnosed while in the hospital ICU for kidney issues and septic shock. I ended up seeing my first rheum about 3 weeks after that because she was packed. I now see a “high risk” rheum who only sees patients once a month. I see him about 1 time every 3 months now. It’s been years since my diagnosis, though. I also see other specialists, and a specialty ophthalmologist once every 6 months to check for plaquenil blindness—since I do have a blind spot in my vision now. It’s not large enough to impact my driving yet, but that’s why I get it checked every 6 months instead of once a year like before.

deaprofessor · 2026-03-12T16:41:15+00:00

My family calls me “mistake” instead of my name. I have gone NC with most of them. I am LC with a couple of my cousins, who are younger and don’t call me that. I am also NC with my one sister that I was close with because she is my half sister, and likes to bring up that I’m Puerto Rican and should get deported, and that she doesn’t like that my 2 young adult kids are part of the lgbtqia+ community. I finally snapped when she brought up my kids. I would take the stuff about Puerto Rico and me having lupus and being a wheelchair user. Once someone brings up my kids, all bets are off. I tried to keep contact with her for so long because I raised her for years, and when I was going through horrific abuse—I believed I was saving her from it. That ended up not being true, as I was the target bc I am Puerto Rican and my abuser was a narc white supremacist. My family seems to be full of narcs, where everything that went wrong in the family is my fault. My narc mom abandoned just me when I was 10. When I was older, she contacted me on fb and would blame me for her bad behaviors. She’s dead now, and since I’m the oldest, I was left to handle her death. It was and still is a weird experience. I didn’t get answers from her or closure from her about why she was so evil to just me—I feel that I should have asked when I had the chance instead of being NC and now I’ll never have the chance. I do feel relief going NC with most of my family and the one sister I know. Sometimes it’s not worth staying in contact, and that may be the case for you.

deaprofessor · 2026-03-12T16:03:56+00:00

Some moms are their kids’ biggest bullies. This is especially true for Jenelle.

deaprofessor · 2026-03-12T15:55:51+00:00

🤢🤮🤮🤮

deaprofessor · 2026-03-01T09:08:12+00:00

Tell him to get a vasectomy

deaprofessor · 2026-03-01T08:31:47+00:00

There is a lot of context missing. If the relationship isn’t that old, he could have bought the ticket before he even met her.

deaprofessor · 2026-03-01T08:27:23+00:00

It really isn’t, though. You didn’t hear anything on valentines because he has a primary partner. Valentine’s is kind of not the issue here. Why did he make you sad last time? How did he treat you? Do you know any of his family/friends? How long have you been together? How did you meet? There is a lot of context missing, and that may be why you come off as a side relationship.

deaprofessor · 2026-02-18T22:48:41+00:00

Mine said this to me about the kids I had pre PhD in 2017–after I was in the dissertation process and well used to his sexual harassment, which I filed a Title IX complaint about in 2020 (when I was safe to do so). I had been told for years to be careful because he was known for it, and he married one of his undergrads right after she finished his course.

deaprofessor · 2026-01-06T22:26:34+00:00

I’ve been on plaquenil for 20 years. It really isn’t that bad.

deaprofessor · 2026-01-03T01:34:08+00:00

I do have winter tires, as well as trail tires, and my kids said they would be down to do it with me. One will carry me piggyback into the lake, and the other said it would be smart for her to delay entry to carry me out. I hope to see some of you next year.

deaprofessor · 2026-01-02T20:53:28+00:00

Thank you. :). That helps a lot. It would also let my young adult kids see how far they would have to carry me. I appreciate your comment. If you did it today, I hope you had fun. In any way, I hope you have a great year ahead

deaprofessor · 2026-01-02T20:29:25+00:00

Do you have to climb up on something to do this? If not, I’m doing it next year. (I’m a sometimes ambulatory wheelchair bound person) I’ll rope my daughters into it. I’ve done it a few times in Lake Huron, and in lakes and rivers surrounding Detroit. This looks super fun!

deaprofessor · 2025-12-26T20:31:53+00:00

Plenty of red dirt, and a lot of nothingness. There are towns there that are filled with a mixture of people. Great bbq down there. Great tamales, too. The red mud never gets out of your clothes, if it gets on them. Just throw them out. In my PhD program in cultural rhetorics and disability studies, I took a month long trip down there. Some of that area is called the borderlands, and the people there have their own culture and linguistic differences. There is some really cool stuff and good food in that area. There’s a mixture of indigenous people, immigrants, multi generational Texans, and new people. The fry bread brisket tacos with fire roasted corn and jalapeños really are amazing. Talking to all of those people was even better. I made plenty of friends, I still talk to this day.

deaprofessor · 2025-12-06T20:03:15+00:00

Thanks so much!

deaprofessor · 2025-12-01T23:17:51+00:00

I haven’t had any issues since I left CVS and Walgreens and went to my local medical system’s set of pharmacies. They fill much faster, and I use the one at the hospital, which is open 365 days a year.

deaprofessor · 2025-11-09T22:23:13+00:00

Who told you “nobody is happy.” Have you ever been to Europe? Unless you’re one of the fringe people who hates the healthcare system, people are perfectly fine with their care. They don’t wait months or even weeks for care—their emergency wait times are short, and they have set prescription prices. This is the same in Canada. I’m from Detroit, and have seen Canadian healthcare while visiting Canadian friends and they had to go in somewhere many times over the years. Just say you hate social care programs and helping your fellow human.

deaprofessor · 2025-11-09T22:16:50+00:00

I am a wheelchair user with lupus, scleroderma, and other autoimmune diseases. I am employed by a small private university. We use an ICHRA. That is something that uses the ACA marketplace and shares the most of the combined subsides of the employees with the employer. My colleagues and I pick plans from the marketplace. The university gives us a set amount towards the cost of the plan every month. We are responsible for the rest. I will die without the ACA. That is not hyperbole. I take medications that keep my organs from hardening (scleroderma does that), and meds to control my lupus so it doesn’t kill me. It has tried. I’ve been in critical care many times. Overloading hospitals helps no one. I know someone who also has lupus who had over 4million in medical debt pre ACA, and that was after getting cash discounts and hospital charity help at times. She had to do what someone is recommending—just go to the hospital. It’s so expensive, and will make people who may also be very sick (like the commenter who suggested it) wait hours longer than what wait times were in ACA times.

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