Still struggling with the wording of this invitation. ‘#COVID-19 has exacerbated the raging #opioid crisis driven by the nation’s more than 50 million #pain suffers......’. I have contacted both @RepJudyChu & @RepWalorski office to express my concern & to 1/
attempt to understand why the blame for the #opioidepidemic seemed to be placed at the feet of those that have #chronicpain. In the past years the # of #opioid pain medication prescriptions have plummeted yet rates of overdose climbed. Many individuals with #chronicpain 2/
who benefitted from treatment from #opioids have been pulled off & abandoned; their #QoL decreasing & suffering increasing. My kids & my husband were/are part of the 50 million that experience/experienced #chronic pain due to #hereditarypancreatitis & #pancreascancer 3/
THEY did not cause this epidemic. THEY deserve/deserved treatment for their pain. @RepWalorski & @RepJudyChu I’d love the opportunity to speak to you are our journey & how such narrative, as expressed in this invitation as well as other actions such as #CDC guidelines 4/
and the misapplication of these guidelines by other governmental entities as well as private entities, clinics and hospitals have harmed those like my loved ones. I have never heard back from either of your offices 5/
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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
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
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
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
#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
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?