marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸

7.2K posts

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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸

marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸

@marissabruner

27, socialist, 👩🏼‍🔬 molecular biologist 🧬, hEDS cursee, CCI/AAI fusee, OTC excisee!!

Katılım Ağustos 2015
590 Takip Edilen388 Takipçiler
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸
@kmaclean5 @JoshuamusicME sorry for the 3rd message, but to summarize the things that seemed to clear up were: neurogenic bladder, fecal loading, dyspareunia, some leg pain, coordination in legs got better, MCAS, POTS, neck/headaches, nystagmus, facial twitching, blurred vission, i’m probably forgetting
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸 retweetledi
PZ *ME Lobbyist*
PZ *ME Lobbyist*@pzneedsrest·
Doctors bitching about "over diagnosis" and "self diagnosis" of neglected conditions that primarily affect women is just misogyny. 🤷‍♀️
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🇱🇧@lebanesesami·
Today i apologized to my manager for having to take numerous phone calls from Lebanon because of the bombings and she said “omg who’s bombing them?” This is the reality of living in the US. This is the ignorance of the American people
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸 retweetledi
Hillcrest Card Company 🔥🍉🇨🇺🏳️‍⚧️🇻🇪🔥
There is a certain genre of white person who has created an artificial quota in their head for the number of disabled people who are allowed to exist and they will not allow reality to intrude on this.
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸 retweetledi
Todd Davenport
Todd Davenport@sunsopeningband·
Notice how it’s always “mind-body” but it’s never “body-mind.” 💁🏻‍♂️
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸 retweetledi
Erin C. Sanders, MSN, WHNP (She/Her)
Over-confidence / misogyny / self-importance of healthcare professionals is a real problem, and it would appear that there is little appetite by medical professionals to discuss this issue publicly.
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Bryan Shapiro MD, MPH
Bryan Shapiro MD, MPH@BShapiroMD·
@awgaffney Underlying cause of unexplained symptoms captured as "EDS/MCAS/POTS/chronic lyme": Developmental trauma, excessive stress, overstimulation. Based on my experience.
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸
wrong and dumb, hEDS is incredibly underdiagnosed. I had two neurosurgeries in my twenties for my hEDS. at 26 I had a filum excision from tethered cord secondary to hEDS and at 23 I had a spinal fusion because of a syrinx I developed from living with tethered cord my whole life.
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸
to do with the hEDS. I give them a uncertain look and ask them to look in my chart again, and invariably they read “spina fusion 2ndry to hEDS, filum excision secondary to hEDS” and then they just say “oh” and move on like it never happened. it’s too hard for their ego.
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸
Just a similar thought Im having: Whenever I met a new doctor and I got through medical history and we get to the two neurosurgeries they are VERY uncomfortable with the idea that the neurosurgeries are for hEDS. They will try to explain to me how the neurosurgeries had nothing
Salvatore Mattera@SalvMattera

This is exactly what I'm worried about. I understand why you'd do it: you need treatment, and the label is getting in the way. But every time one of us drops Long COVID for something more palatable, we erase evidence that this pandemic is still destroying lives. The term is proof that a specific virus did this, that it's still doing it, and that people need to be held accountable.

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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸
4 neurosurgeons in the midwest told me me I did not have tethered cord after specifically asking them about OCCULT tethered cord. 5 years later I bit the bullet and travelled to Rhode Island where I had surgery which revealed I did indeed have OTC. Sometimes the doctor you need..
Nele@NeleHelena

There is no way of excluding all physical causes before you diagnose someone with a psychosomatic illness. We don't know all possible physical causes. We don't even fully understand the healthy body yet, let alone everything that can go wrong in it.

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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸 retweetledi
Nele
Nele@NeleHelena·
When I worked at victim support we always made sure to tell people that their emotions are a very normal response to something abnormal that happened.  I've never heard this in healthcare as a patient. While it's pretty normal to feel things about the symptoms you experience. 3/
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Adam Johnson
Adam Johnson@adamjohnsonCHI·
Only 30% of republicans supporting ground troops is bad bad for Trump. Remember, a 2015 PPP poll found 30% of republicans said they support bombing Agrabah, the fictional country from Aladdin. That’s the baseline level of lizard brain racism we’re dealing with and yet
Gregg Carlstrom@glcarlstrom

In our latest @TheEconomist/@YouGovAmerica poll, signs that even Republicans are starting to sour on the Iran war. Compared to two weeks ago: - support for the war has fallen from 73% of Republicans to 62%; - approval of how Trump is handling the war has dropped from 81% of Republicans to 68%; - just 30% of Republicans favor sending ground troops to Iran

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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸
@useless_priest of the 6-8 meds I tried for dysautonomia ivabradine worked the best for me, i’d say it reduced my symptoms by like 10%, compared to the spinal fusion for CCI/AAI which reduced it by more like 95-99% depending on if i’m sick, drank more than one glass of wine, dehydrated etc
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marissa🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸
@PutAimovigOnNHS mine was never so formal, luckily, just a lot of “are you in therapy?” when I would go to docs about pain, fainting, bladder, or stomach issues. I also got banned from the nurses office in elementary school. these things stick with you 🫂 you’re right, it’s nice to not be alone
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Provide Aimovig for migraine on the NHS
@marissabruner @jabberwock951 Same 🫂 It really was, and it took some time to unpack. But it was also the first time I realised I wasn’t alone in being treated how I had been (the course was just the post-diagnosis version of ‘nothing wrong’) - seeing 10 other people, all women btw - with the same experience.
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Provide Aimovig for migraine on the NHS
When I attended my pain management course on the NHS, I was explicitly told that though cutting your hand (acute pain) results in physical damage, appropriate nociception and thereby pain perception, chronic pain occurs when there’s ‘nothing wrong, nothing to fix, no harm’.
Jonathan@jabberwock951

@dysclinic This feels like deliberate misunderstanding. If I cut my hand, my thoughts did not cause the pain. But swearing, distracting myself and jumping up and down will lessen my experience of it. We can prove that. How? Because ALL pain has an intrinsic psychological component. 1/2

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Provide Aimovig for migraine on the NHS
@marissabruner @jabberwock951 That same EDS pain management course had an answer for all of us who had imaging showing damage. They had a handout titled VOMIT: Victim of Medical Imaging Technology which claimed even if imaging showed correlating objective damage, symptoms are still likely due to beliefs!
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