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
furthermore inds present differently with T1 & T2. My nephew’s bs actually skyrocketed when playing basketball - a sport he loved and was good at. #Diabetes is hard to manage & costly. Furthermore there has been research highlighting harms of a restrictive diet particularly on 2/
children/youth. Articles such as this & statements such as this seems very flippant and NOT #patientcentric at ALL. We also have a greedy #pharmaceutical industry that needs to be held in check & they are NOT. There is no reason why the cost of #insulin has #skyrocketed. 3/
There have been no formulary changes or additional therapeutic uses developed. The industry has profited handsomely on chronic illnesses. I find these statements ignorant of what #patients & families have to endure. I know people who have died bc they restricted both 4/
#insulin and food in order to be able to afford #insulin. 5/

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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
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/
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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/
What I don’t condone, is #physicians & #antiopioid proponents utilizing work done such as @BethDarnall or other psychologist that work in the area of #pain to be dismissive of those with #acute or #chronicpain. Sadly, this occurs all too often and has caused a distrust by 2/
those with #acute or #chronic pain. I believe that we need a wide variety of options. I believe that care should be individualized. That this is often not occurring is NOT the fault of those working to provide options. Those in the field that dismiss patients by saying #pain 3/
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13 Sep
#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/
to those with #chronicpain & the belief by many physicians & professionals that psychological strategies will alleviate #chronicpain as a stand-alone strategy. I DO believe that psychological strategies CAN be of benefit addressing pain, but, how #pain is being #pathologized 3/
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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
of these guidelines continuing? Why are those who have benefitted from #opioid #pain medications being removed, shamed & stigmatized? Why is care not individualized? It’s very clear our #voices have not been heard. There is nothing that was said that eased my concern for 3/
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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/
cut all #patients off of #opioids at once due to what administration stated was because of ‘national standard’ (#CDC Guidelines). So many harmed. How are actions like this ok? Three weeks prior to my son being removed from #opioid #pain medications we had met with his 2/
#pain physician & had a long talk about #opioid #pain #medications being best option for him. Removing individuals w #chronicpain from #opioid pain medication was not a decision based on individual care of #patients BUT @SanfordHealth taking care of own needs. Multiple 3/
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