Tweet

How to get URL link on Twitter App

On the Twitter thread, click on or icon on the bottom
Click again on or Share Via icon
Click on Copy Link to Tweet
Paste it above and click "Unroll Thread"!
More info at Twitter Help

Beth Steckler (she/her)

@purplemamabear

May 24 • 8 tweets • 14 min read Twitter logo

Read on Twitter

Scrolly

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

• • •

Missing some Tweet in this thread? You can try to force a refresh

This Thread may be Removed Anytime!

Twitter may remove this content at anytime! Save it as PDF for later use!

More from @purplemamabear

Beth Steckler (she/her)

@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

@hhsndgov

#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

Beth Steckler (she/her)

@purplemamabear

May 24

@SanfordHealth

#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

Read 4 tweets

Beth Steckler (she/her)

@purplemamabear

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

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

Beth Steckler (she/her)

@purplemamabear

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

Beth Steckler (she/her)

@purplemamabear

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

Read 5 tweets

Beth Steckler (she/her)

@purplemamabear

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