Um absolutely adore this thread! I must read for #NEISvoid #CPP #RareDisease. My kids experienced much of what is mentioned in thread. 1st they have a rare disease, 2nd had a rare medical procedure to try to address symptoms, it caused complications. My kids now have T3 1/
the ‘care’ they receive has often been #traumatic as they don’t fit nicely into a box 📦. It’s because of their experiences (& my husbands) that I advocate. As young adults they still have to interact w the #healthcare industry but they are distrustful ( & rightly so). So many 2/
Physicians do not understand #medicaltrauma & their roles in it. I know it’s hard to be a #physician today, I know it’s hard to be in #healthcare but to dismiss, shame & blame a #patient is harmful not only psychologically but physically. 3/
‘A’ must read 🤦🏻‍♀️

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More from @purplemamabear

24 Oct
Dear @OptumRx & @SanfordHealth you are NOT his #physician. You know nothing of his #health hx. Two years ago #Sanford #Bismarck #pain clinic pulled all #patients off #opioid #pain medications. This was not #patientcentered care, but care deemed appropriate BY administrators 1 ImageImageImage
Now @OptumRx & @SanfordHealth #insurance sending out letters re #opioid #pain #medications. My son had to move from a #Sanford clinic to another clinic due to #abandonment. Yep, abandonment. Plain & simple what you did was harmful & not based on #patients needs. You need 2
to look at research, that shows the harms of what u r doing. @SanfordHealth administration in Bismarck informed me 2 years ago when all #patients pulled off #opioids that it was the ‘national standard’ of care established by @CDCInjury @CDCDirector. The guidelines are NOT 3/
Read 9 tweets
22 Oct
I know that there are #patient advocates that take issue with @BethDarnall work but I find it critical. I know many individuals in my community that have wanted to decrease their opioids or get off all together for various reasons. Listening to their stories are frightening. 1/
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21 Oct
Warning ⚠️ ⚠️ I AM snarky. I get that we have an individual responsibility for our health. I get that but articles & comments as below definitely get my snark up. My kids have T3 #diabetes which is unbelievably difficult to control & truly cannot be controlled with #diet. 1/ ImageImage
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#PathologizingPain
#ChronicPain is the most prevalent health issue for Americans, yet, there is a lack of acknowledgment of the impact of pain on individuals QoL as well as access to quality options available. The last several years we have seen a proliferation of 1/
psychological strategies be touted as solutions for both #chronicpain & #acutepain. This has been fostered by the #CDC guidelines as well as various independent groups. As an individual who works in the area of mental health I am alarmed at the amount of #gaslighting that 2/
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17 Jul
I am perplexed how #RogerChou can not only sit on the #CDCOWG but is a lead author. He recused himself at the #CDC meeting due to #COIs bc of his work as ‘expert witness’ in Purdue litigation but is lead author 🤷🏻‍♀️ @CDCDirector @CDCInjury could you explain how this is ethical? 1/
Listening to the #CDCOWG from perspective of #caregiver & advocate was disheartening. For me @CDCDirector assurances that #patients voices were heard was meaningless. She may say that we’ve been heard but then how are so many feeling as we haven’t been? Why are the #legislation 2
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16 Jul
I want to again express my concern to my senators @SenJohnHoeven and @kevincramer about the lack of transparency by the @CDCDirector @CDCInjury in the revising of the #OpioidGuidelines. Great harm has been done to those w #chronicpain in our state. @SanfordHealth 1/
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