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
In-person seating is limited with extensive COVID-19 precautions (including mandatory masking, self-testing negative, and a venue hosting MERV-13 filters), and the event will be livestreamed for global viewing (with ASL interpretation available).
Nice. I missed out on the time when mandatory testing was in place, and now mandatory masking is also very rare 🤕
People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
If you’re temporarily abled - you have a chance to save yourself from a similar fate. You can wear a mask, filter & ventilate the air, test and isolate and take precautions to avoid repeated COVID infections. You can protect your health at all costs.
I’ve lost track of the number of people who’ve become chronically ill and only THEN come to me for advice. It’s always some variation of “I had no idea it was THIS bad or THIS hard to get help.” They want me to help them be the exception they were so sure they would be.
The problem is - very few people ARE the exception. Unless you’ve got a huge support network who can take time off work to care for you OR incredible wealth…you will have to learn to go without many things. Showers, food, cleaning your home…. Things will get sacrificed.
Even if you are the exception and you have all the support in the world - there’s no replacing your health. It’s not fun to be completely dependent on others for your basic needs - and people can and do grow resentful of having to help you.
There are no do-overs. So stop telling us we are wrong. Wanting to believe something is a certain way doesn’t make it true. I’ve had enough of denial. People are so determined to bring back 2019 that they’re throwing away their health & the health of those around them
If you become disabled - it’ll be too late. If we continue to ignore the risks of Long Covid - our systems will crumble faster & everyone will suffer. Protect the most vulnerable - care about the air we share - and we ALL benefit.
Others are just blind believers in whatever conspiracy theories the right is pushing.
And some are even coming from the ultra left and have lost (or never had) the ability to weed through the data coming from the medical/scientific establishment to determine which is valid, vs the bs, like Fauci's claim early in the pandemic that mask wouldn't provide any protection.
My sons' music teacher contacted me to say that his return from his vacation was delayed by a Covid infection. He explained the timeline from first-symptom to first-negative-test, proactively affirmed that he'd be masking and running the air purifier I gave him, and gave the option to delay resumption of lessons.
I HELLA HEART THIS. Basic human decency. Common courtesy. Simple communication. It doesn't have to be difficult.
I’m highlighting this part since it may be easily missed:
“The White House has yet to sign off on the guidance that the agency is expected to release in April for public feedback, officials said. One agency official said the timing could “move around a bit” until the guidance is finalized.”
They need to hear a ton of pushback from as many of us as possible.