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Beth Steckler (she/her) Profile picture
@purplemamabear
May 24, 2023 • 8 tweets • 14 min read • Read on X
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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

Beth Steckler (she/her) Profile picture
Aug 2
Walking through the healthcare system the last 26 years with my family I’ve experienced a lot of gaslighting. I’ve watched my family experience a lot of gaslighting.

It infuriates me.

My friend’s life is at risk right now due to gaslighting.

She is terrified of physicians 1
She didn’t care insurance for years. About 4 years ago I finally encouraged her to get insurance and do regular check ups, mammograms and paps.

She has always struggled with her menstrual cycle. Extremely heavy bleeding and clots.

It impacts her life. She can go through a 2
pad an hour. If she sits down and stands up, clots. She also struggles with fatigue. I’ve expressed my concern multiple times and asked if she has spoken to her physician about this.

She indicated she had & in fact had a friend go with because her NP kept telling her it was 3
Read 8 tweets
Beth Steckler (she/her) Profile picture
Jan 18
Care for those in #pain often infuriates me because they get very little, none and often labeled. There may be pockets where actual quality care occurs but more often than not I hear stories of #trauma. #HereditaryPancreatitis is a very painful disease. I have watched all my 1
family members struggle with this. It’s gut wrenching. It’s hard for adults but watching a child in such pain is indescribable 💔. I regularly talk to parents or am contacted by parents who are struggling to access pain care for their child with pancreatitis. Just heard from 2
a parent whose child with #hereditarypancreatitis - who is a toddler - NOT joking - was labeled a #drugseeker. Those were the words the mom stated the physician used. A #drugseeker at three. We need access & better quality of care. This only layers trauma on child & family. 3
Read 9 tweets
Beth Steckler (she/her) Profile picture
Nov 1, 2023
I just want to let out my frustrations w the #healthcare system & how assembly healthcare does NOT work. I think back about programs my kids went to. One being a renowned #painprogram. My focus was to assist in developing tools they could utilize in life to deal w #chronicpain 1
& their #illnesses. I wanted a #balance, I wanted a plan that was based on their individual needs. Their #pediatrician at 1st stated she had concerns w #program & not an #option for them. The #clinic called #pediatrician back saying they’d modify it for my kids. There really 2
were not a lot of options. The program promised individual care so off we went.
Nope started #titrating all #painmeds to align w time of #program vs Ind need. Then denied my daughter right to go to walk in #clinic when she was having issues saying this is what youth did 3
Read 10 tweets
Beth Steckler (she/her) Profile picture
May 24, 2023
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
Beth Steckler (she/her) Profile picture
May 24, 2023
#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
Beth Steckler (she/her) Profile picture
May 24, 2023
#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

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