Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?
“Maybe your legs are just getting fat.”
Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care
This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.
For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.
So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)
Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.
Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.
I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.
Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.
MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum
I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.
This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.
Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.
Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.
Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.
This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.
And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives
Why do we tolerate ableism & fatphobia in urbanism, cycling?
Do you not think you can discuss the dangers of large autos without endorsing fatphobia? Is fat-shaming such a positive thing for you that it's the first analogy you leapt to?
#fatphobia is fuckin wild man #people will come up to you like “hey. I think you are Ugly and Not attractive. just wanted to make sure you knew so you could get to fixing that maybe?” & when you’re like no wtf leave me alone they’re like “ok CLEARLY you don’t care about your #HEALTH and will die of FAT DISEASE by 25 🙄”
Read "YOU JUST NEED TO LOSE WEIGHT": AND 19 OTHER MYTHS ABOUT FAT PEOPLE by Aubrey Gordon if you love discussing complex topics with thoroughness & kindness, the podcast Maintenance Phase, the body positive movement, and dismantling anti-fat bias & other forms of oppression.
"Ozempic shows us why we cannot trust this corporate feminism: It is a feminism of aesthetics and individualism and commercial opportunism, not of political commitment. As soon as the cruel honesty of capitalism tells Mattel that it’s in their best interest to do so, they’ll leave feminist Barbie behind, the same way they abandoned the plus-size models and the body positive photoshoots."
#Fatphobia is deranged. Do y'all realize how fuckin bizarre it is to fixate on body size the way this culture does? To measure a person's worth by how small their ass is? Do you think you're a better person than me because my body is a different shape than yours? Cuz that's literally just bigotry, buddy. And y'all are brainwashed to think it's ok, even funny, to mock fat people and treat them as subhuman. Am I describing you? Get fucked, weirdo.
Out and about pretty early for me, for yet another morning medical thing. Now sitting in the parking lot before the appointment, absorbing some caffeine while I calm and center before taking my queer old fat ass and its medical PTSD anxieties into yet another unfamiliar medical environment. (Yes, venting about it online is part of my coping strategies.)
@StillIRise1963
Peer pressure + in-group formation 100%. Dissonance be damned.
Fear of being othered: for non-thin bodies, meet fear of being othered for anything from, for the progressive reluctant, nonnatural, for the libertarian reluctant, nonsmallbusiness, or for the rightwing reluctant, nonMAGA bodies
In a novel move, #Pinterest updates its content algorithm to surface diverse body types, powered by an #AI system trained on 5B+ images of bodies of all sizes.
I look at myself, at my body, in the hotel mirror, and I try not to judge myself any more harshly than I would if this body belonged to anyone else. If I were looking at the photo of another woman, would I still think "what a fat, lazy slob"? Would I look down on her for always falling so easily onto her fast metabolism that she barely needed to pay attention to calorie intake, and now that she is nearly forty and all of a sudden that fast metabolism has betrayed her, she's rapidly gaining all the pounds she once ignored? I like to think not. I like to think that it is very easy to feel #bodyPositivity towards another, after I have worked (and continue to work) to unindoctrinate myself from the #fatphobia that my childhood and society have instilled in me. But it is so, so, so much harder to apply that same kindness to myself.
Something that I really makes me feel good is listening to #podcasts
And in the spirit of sharing things that I enjoy, here’s a thread 🧵 with my current favourites, complete with notes on topics covered and why I like them.
The list is presented in no particular order (as I personally dislike rankings), but I must admit that my absolute favourite #podcaster is journalist, debunker and “Methodology Queen” Michael Hobbes, who appears to be on Mastodon as @rottenindenmark - anything he (co)hosts is a must listen for me!
So… let’s start with #MaintenancePhase, co-hosted by the above mentioned Michael Hobbes and “YourFatFriend” author and blogger Aubrey Gordon. The two take turns in presenting and debunking a famous diet or other wellness fad / book / influencer. It’s often tragic, but hilarious. Who would have thought that dismantling #FatPhobia could be this fun?
Hey Mastodon! I'm trying to help a friend and find a NON-FATPHOBIC doctor - GP - in the Greater Philly Area. I think they have decent insurance. Please boost. And if you know anyone, please share!
Short essay on the lack of positive, fat role models on TV. #Fatphobia exists! We need to be more inclusive of fat women in society, and it starts with portraying women's worth as something beyond being skinny.
In case anyone needs it: BMI requirements for gender-affirming care lack an empirical basis, do not predict outcomes, increase the likelihood of eating disorders among trans people, fail to result in trans patients losing and maintaining weightloss, and basically just serves as a way to deny trans people healthcare.
Okay, second most viral toot after queer joy about my chunky shork bois appears to be my post about BMI and gender-affirming care! In case anyone is curious why it keeps getting randomly reboosted, read above! ☝🏻
TLDR: BMI is not a predictor of gender affirming surgery results and its use as a criteria for eligibility just blocks trans people from getting care
Here's the thing about BMI - I lost nearly 2 inches of height on HRT. This means that to hit the same arbitrary BMI I have to lose an additional 10lbs of weight.
BMI is a lousy, arbitrary metric, and shouldn't be used to gatekeep care for ANYONE.