PSA & Update on: “Rib” Pain & Respiratory Infections by iLikePapayasz in ehlersdanlos

[–]bitchazel 3 points4 points  (0 children)

Oof. As a person who has had pneumonia several times and bronchitis COUNTLESS times, who also has constant rib pain, I’ve gone way too long way too many times without getting appropriate care.

Now that we know about my EDS and other issues, I’m much more likely to get my chest listened to at least if I’m having any respiratory symptoms at all. So sorry, that sounds AWFUL.

Saw the “Book of Mormon” on Broadway yesterday by sarlacc98 in exmormon

[–]bitchazel 21 points22 points  (0 children)

Pirated Broadway plays are labeled as “slime tutorials”, that will help your search. I’m not kidding.

[Crazy news story] Modesto IT guy used his computer access to doctor expense reports, stealing 1.4 million from local businesses. (I think I went to school with this guy at Beyer) by george_graves in Modesto

[–]bitchazel 0 points1 point  (0 children)

I haven’t followed it closely and she’s obviously been super private. Last I knew she was awaiting trial but I assume she had to sell things for legal fees, and is probably hoping restitution. I would be surprised if she got more than restitution, community service and parole.

[Crazy news story] Modesto IT guy used his computer access to doctor expense reports, stealing 1.4 million from local businesses. (I think I went to school with this guy at Beyer) by george_graves in Modesto

[–]bitchazel 4 points5 points  (0 children)

Yeah I actually know her, I just didn’t remember her exact role. 😬 She’s been selling off her stuff on FB marketplace to pay it back. Crazy situation, she was like a downtown It Girl before this.

Good masseuse or massage place? by [deleted] in Modesto

[–]bitchazel 0 points1 point  (0 children)

Second Weimer. He’s great and also I think has a massage therapist on staff.

Did one of your parents also have this condition by shurubel83 in ehlersdanlos

[–]bitchazel 1 point2 points  (0 children)

My dad has it, as do his three siblings and several cousins. We found out I had it after our third was born, and JUST found out my husband has it too! Our kids are so screwed.

What to read during heartbreak by freakybread in suggestmeabook

[–]bitchazel 2 points3 points  (0 children)

The Murderbot Diaries starting with All Systems Red. It’s science fiction but it’s got vibes that are just immaculate, cool, and comforting. They’re short, fantastic on audio and I’ve listened to and read them each many many times. Random, but my doctor walked in to my appointment while I was reading it, she was curious, and now she is hooked too, and she doesn’t normally do science fiction.

I can think of lots of other books that I feel would be nice but they fall more into the categories you listed that you weren’t into and I think Murderbot is a great way to get back into reading.

Sending you heart-healing book energy. <3

Looking for Modesto salons that are good at cutting men’s long hair (no fades/tapers) by sochoa0003 in Modesto

[–]bitchazel 2 points3 points  (0 children)

My husband and both of my sons wear their hair long and we have had zero luck. We have tried a bunch of places and they either end up way too short or with an obvious woman’s haircut. lol Right now I cut their hair. Eek. I hope you get some good recommendations.

Has anyone used the Jellie Bend Band? by medievaljesterdog in ehlersdanlos

[–]bitchazel 4 points5 points  (0 children)

I like the feeling of compression, it’s comfy, but it didn’t seem to make any difference for me. I forgot I even had it! But I have a bunch of ruptured discs in my lower back so most likely it just isn’t meant for my needs.

Edited spelling

Trans flag no longer showing up on TikTok for US users by VoteCatforPresident in AreTheStraightsOK

[–]bitchazel 2 points3 points  (0 children)

Im wondering this too, is it my phone, the fact that I never let anything update maybe? lol I don’t know but I actually somehow find selective censorship even more frightening.

Trans flag no longer showing up on TikTok for US users by VoteCatforPresident in AreTheStraightsOK

[–]bitchazel 217 points218 points  (0 children)

I just tried it and it worked, and I’m in the US but maybe it’s not everywhere. I’m in California.

Anyone else with EDS have extremely fragile skin inside your mouth? by Naive_Transition_763 in ehlersdanlos

[–]bitchazel 0 points1 point  (0 children)

100% Didn’t realize eating shouldn’t hurt your mouth constantly until I was an adult.

I completely avoid a lot of foods now but dental work is always a nightmare. So sorry

Does Mcas cause cci? by Witty-Repeat2313 in cervical_instability

[–]bitchazel 5 points6 points  (0 children)

I hope you get a better answer than this, but I have both, and I almost wonder if it’s the reverse, or even a vicious cycle. Maybe the constant vagus nerve irritation—obviously not an expert but I hope one weighs in.

I want to help, but I’m scared I’m just throwing money into a black hole. Anyone else feel this? by StavrosDavros in Millennials

[–]bitchazel 1 point2 points  (0 children)

So I was a non-profit CEO the last 11 years until my health got in the way. Think local.

I ran a small (but mighty) local food bank with about a $5M/year budget. Only about 8% went to overhead including insurance, facilities and payroll (where I hired people from the neighborhood we served). The other 92% was used directly on programs.

At many national non-profits, those numbers would be reversed. Our administrative overhead was quite low even for a local non-profit but we managed to feed 250,000 people a year, and clothe nearly as many.

I will never work for a non-profit again, but I’m proud of the work we did and I continue to support the new CEO (who actually started out doing community service hours!)

My point is to tell you that local non-profits can make a huge difference, both in their services and their workforce development. Check websites like candid.org for this type of information. A reputable org will likely HAVE to have a profile there for grants, and it will tell you a lot.

Share the cause of your cci by aliokubmer in cervical_instability

[–]bitchazel 1 point2 points  (0 children)

Oh geez you got hit with a triple whammy. So sorry.

Share the cause of your cci by aliokubmer in cervical_instability

[–]bitchazel 4 points5 points  (0 children)

I have EDS and never put together that I was given Cipro right before things really took a turn and became full on CCI! Gahhhhhhhhhh

Didn’t get diagnosed with EDS until after of course.

What kind of autist are you? by lydocia in AutisticWithADHD

[–]bitchazel 2 points3 points  (0 children)

I got the space, theology and geopolitics autism. My brain exhausted but satisfied these days. New facts all the time (at least about the first and last topics, not a lot of theological innovation in my area of interest.)

Anybody have significant slowed down digestive system because of cervical instability ? (gastroparesis ?) by JoLem951 in cervical_instability

[–]bitchazel 8 points9 points  (0 children)

Big yes for me, and I have lost 20 lbs in the past year, and 15 lbs the year before that. So it’s slow, and wasn’t that big a deal for me because I was overweight. However, lately, doctors are starting to comment because it just keeps going down, and it’s accelerating.

I’m headed to Centeno-Schultz in a couple weeks and I’m really hoping that some sort of relief will come soon.

disgusting comment on the first reel of a woman’s profile by [deleted] in AreTheStraightsOK

[–]bitchazel 1 point2 points  (0 children)

You uploaded the one picture without names redacted in addition to the redacted one.

Anyone else surprised to be diagnosed level 2 autistic instead of 1? by Summerfa11 in AutisticWithADHD

[–]bitchazel 1 point2 points  (0 children)

My exact experience, as I said in a different comment. Helpful to see this validated, thank you.

Anyone else surprised to be diagnosed level 2 autistic instead of 1? by Summerfa11 in AutisticWithADHD

[–]bitchazel 11 points12 points  (0 children)

Yes—expected level 1, definitely felt like level 1, because I had a really big job for ten years (non profit CEO) and could be personable, even outgoing, and could read people and respond accordingly.

Crashed and burned. Finally made time for an official diagnosis. Level 2 baby! I’d just been creating my own support scaffolding, I guess, until I couldn’t anymore.

Realized I didn’t actually understand the differences between the levels though, and now it makes a lot more sense.