Beth Steckler (she/her) Profile picture
May 24 8 tweets 14 min read Twitter logo Read on Twitter
Just doing some digging. #Pain is extremely nuanced. And the approach should also. W my kids #health & #pain there has been continued lack of knowledge, assumptions, & unwillingness to understand.
➡️#Anatomy of those that had #TPAIT & lack of understanding
by many docs 1
how this can impact #pain
➡️ Not identify or understanding impact of #MalabsorptionSyndrome
➡️Assumption that removal of #pancreas should immediately ‘solve’ issue of #ChronicPain
➡️ #GastricEmptying issues
➡️ Age of my kids (too young to have #pain)
➡️ Lack of 2
understanding & identification of #MedicalTrauma
➡️T3c #Diabetes
➡️ Impact of #NASH on #pain & options for #care

There are numerous factors that are critical in #Treating an #ChronicPain in #Individuals. They list of few listed above that are factors w my kids, have often 3
been not taken into account & thus care often has not been appropriate & many times it’s been extremely #harmful.

How do #carepartners & #patients #advocate? Our family had encountered issues for years & even though we attempt to point out following mostly dismissed. So many 4
factors involved when you have #RareDisease #ChronicPain #neisvoid #DisabilityTwitter a piecemeal approach actually is a incredible #Risk for us, YET minimal physicians (some studies are demonstrating) are not interested in caring for us. The #HealthcareInAmerica model is NOT 5
conducive to accessing the care we need & #Deserve.
We are #problematic
We are #timeconsuming
We are not a #moneymaker
We often have #medicaltrauma due to the exact system we are supposed to turn to for assistance
Are knowledge #dismissed & not #valued
6
we are viewed often as #criminals blamed for our #diseases

Our #diseases come w #grief & #pain

Yet it is the system that demoralizes & #shames us.

Our #voices so easily #silenced by #gaslighting by #medicalprofessionals, while others, turn away & remain #Silent.

7
#WeDoMatter AND we deserve a system that WILL meet our needs. We #Deserve out #voice and #Agency.

The #Irony of it all is IF our #Voices were #Valued, & system met our #needs; costs would lower & our outcomes would be better.

We deserve SO much better

#mosquito 8

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More from @purplemamabear

May 24
Reviewing some #NorthDakota information surrounding #prescribed #opioids.
#OpioidPrescriptions #declined 34% from 2006 to 2020

Statement in poster ➡️ ‘Since 2007 every state has been working to address the #opioid epidemic & best practices are now understood’

Are they? 1
In the #Conclusion
➡️ nothing that addresses the #harm of #patients that struggled with #chronicpain. #Nothing re #outcomes of those #abandoned by #physicians & removed from #prescribed #opioids. Nothing about the looming disaster of last #physicians that #prescribe in 2 Image
#NorthDakota leaving. #Patients having no recourse. #NorthDakota absolutely has growth in area of serving those w #SUD yet in their pursuit to do this, they have #harmed those w #chronicpain & continue to exclude them in discussions or acknowledge these #harms. @hhsndgov 3
Read 5 tweets
May 24
#Apologies can be steps towards assisting in #healing #medical #trauma. When my daughter was in @SanfordHealth for 2 months, virtually #secluded bc of accusations by #hospital administration that she causes her diabetic crisis a #hospitalist & #diabetic counselor accused 1
her of ‘stashing’ #Insulin in room. All visitors searched. No items in room unless searched - camera in room 24/7 YET she is accused of injecting #Insulin. My daughter again attempted to educate on post #TPAIT. After additional days, the #Diabetic #Counselor came back & 2
#apologized acknowledging how hard it was to control her #diabetes. It’s hard control when she is at #Baseline but if she is sick nightmare. That #apology meant the world 🌎 to my daughter. She continued to work w this #counselor throughout stay & after. YET #PatientRelations 3 Image
Read 4 tweets
May 24
#Pain is nuanced
The difficulty with articles such as below example, is nuances not recognized.
For example, I could identify as someone with #chronicPain I have a few conditions that are accompanied by #pain.
My #pain is NOT unrelenting, it’s there ‘hovering’ in the 1 Image
background. I do #yoga 🧘‍♂️ & #meditation & for ME, for the #pain I experience, it provides benefit.
However, take my kids; NASH, kidney disease, gastroperisis, T3, scar tissue neuropathy etc. #mindfullness #meditation is not going even touch it. Not in anyway
2 example of 2
#pain experiences.
It’s understandable that many in nation that are not in #medical profession struggle w the #nuances
What I struggle w & what I believe #harms those w #ChronicPain is the generalization of #pain by #medicalprofessionals & lack of individualizing care based 3
Read 4 tweets
May 24
#BuzzWords in #Healthcare that often mean nothing: #PatientEngagement, #PatientCenteredCare #SharedDecisionMaking
Studies have demonstrated for years that IF #patients are #authentically involved in #care outcomes are better, yet, too often the above words thrown out to 1
attract, yet no actions follow.
How often have you been asked your desired outcome of #Healthcare?
How often are you asked about barriers to healthcare or recommendations?
How often are plans focused only on med issue?
How often do you feel your #voice is truly #valued in 2
your own #careplanning?
How often do you feel there is collaboration between all doctors OR do you feel at times doc have competing or conflicting recommendations?

#Patients voice should be central. #LetMeHearYourVoice 3
Read 4 tweets
May 23
Please Advise #HelpNeeded excel-medical.com
I have been working with woman who has been struggling with a number of #physicians & getting mixed messages re #prescribed #medication. She was pulled off a combo of meds that worked for her a few years ago. Since then has 1
struggled with accessing meds that worked & #stabilization of health conditions. In desperation to improve QoL reached out to #Clinic above. They prescribed w no issues. It was difficult for #patient to access at #Pharmacy. She then attempted to contact #physician re questions 2
& was told could not talk to #physician & then received this message last night. I am furious & looking for advice on how she should disengage & get back w regular #physicians, yet she is afraid they will terminate care based on her actions & she is fearful she did something 3 Image
Read 5 tweets
May 23
I am sympathetic to #medical professionals as well as to #MentalHealth providers, however, IF you have uttered ☝🏼 of following statements or engaged in ☝🏼 of following behaviors you may want to reassess your #profession:

- ‘I am sorry you are to complex, complicated, we 1
can’t help you’
-‘You don’t want help bc you did not do x, y, or z’
-If you are unable to truly #Listen
-If you are unwilling to continually assess if you are negatively impacting situation
-If you use manipulation
-If you feel person & or family should not have #voice in 2
planning - it should be central.
-If you are unable to discuss difficult topics/concern w person & or family.
-If you make assumptions
-If you are unwilling to collaborate with others that support/provide care to person/family
-If you say ☝🏼 thing to person & or family & 3
Read 5 tweets

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