Focused on improving healthcare for patients & caregivers & medical professionals. Patient advocate, patient engagement. Believes kindness CAN change the world.
Nov 1 • 10 tweets • 2 min read
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
May 24 • 8 tweets • 14 min read
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
#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
Please Advise #HelpNeededexcel-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
May 23 • 5 tweets • 6 min read
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
Mar 26 • 18 tweets • 17 min read
Warning ⚠️ ⛔️ : Uncomfortable Thread 🪡
My tweets lately have focused on my daughter’s #healthcare at @SanfordHealth & our struggle to access appropriate & compassion care where her agency is not taken away. I know the threads my be uncomfortable for some particularly if you 1
are a #medical professional. I am aware that many are thinking 💭‘what’s the back story’, ‘something they did caused this no #medical facility or #medical#professional would partake in this’. I get that. There IS a back story. A child at 2 wks having her 1st #hereditary 2
Mar 24 • 5 tweets • 3 min read
So @SanfordHealth has continually accused my daughter of injecting herself w #insulin to create crises. Well she has security guard monitoring 24/7, all bags searched. Her #bloodsugars have dropped & skyrocketed with no rhyme or reason. We have told them this happens. There is 1
a note 📝 in chart from specialists that outlines (ignored) only thing looked at behavioral plan that highlights her insulin injecting 😡. #DiabetesEducator comes in & asks if she has #insulin on her as her #BloodSugar ‘doesn’t make sense’ 🤦🏻♀️. This is abusive. I have been told 2
Oct 19, 2022 • 8 tweets • 7 min read
#FamilyCentric#PatientCentric#ConsumerCentric planning/care thread 🧵
Even prior to my career I was interested in care that was #centric to the person, re of scenario (#homelessness, #mentalhealth, #health, #disabled etc). In every position I’ve held I’ve always centered on 1/
Before anything listening to person and or family, planning being centric, based on strengths & needs of Ind and or family. People (those working in system) found it radical but it worked it was effective. It pushed systems, thus in many places the process retreated back to 2/
Oct 19, 2022 • 19 tweets • 20 min read
Almost 25 years ago I entered the world 🌍 of #raredisease when 1st my husband was dx w #PRSS1 & then our children.
What I’ve learned is #HealthcareInAmerica is brutal & often #harms those most in need.
The system is broken.
There is no disguising it.
I believe that our 1
#Healthcare system truly only benefits a small populous; individuals that are mainly #healthy & don’t belong to a marginalized group.
There are monumental system issues that need to be addressed that impact #medicalprofessionals ability to provide necessary 2
While I do not dismiss this may be a factor, I am very frustrated at the lack of introspection by many #physicians where #medicaltrauma due to care that 1/
was dismissive, shaming, manipulative and lacked transparency does a great deal of harm leading to PTSD & I would postulate the worsening of #pain & or #disease. It’s as if the model, is backwards. Don’t get me wrong I absolutely believe #trauma can have long lasting impacts 2/
Also, why get upset with #patient when lack of coordination between #medicalprofessionals, assumption of #patient 1/
goals as well as often your own biases result in care that is subpar & harmful & leads to said hospitalizations 🤦🏻♀️. I understand you all are in a difficult position yourselves but you definitely have much more #power than #patient. 2
May 20, 2022 • 25 tweets • 13 min read
After years of my daughter receiving care at our local #hospital that is often based on #bias & is often subpar I have begun to reach out to different state agencies. The experiences that my daughter has had to experience over the last several years has been surreal 1/
I’ve attempted many times to engage with #patientservices w various staff in attempts to implement a plan which is based on her needs, recognizes the #medicaltrauma she has experienced & how it impacts her. I’ve attempted to explain how her diabetes works (to the extent I even 2
I never know when she has a medical crisis and needs the hospital IF she will need to interact w a personnel or professional whose #biases interfere with care. These incidences can be shaming, demeaning or they can put her life at risk. My daughter has had hypoglycemic crises 2/
Apr 30, 2022 • 45 tweets • 24 min read
Thread 🧵: Reflections of a Parent/Caregiver After Six Years Implementation of CDC Guidelines (warning long but I am very interested in feedback)
Since babies, my kids, have intimately known #pain. At one time their #pain was intermittent & #acute. Sadly, they now struggle 1/#chronicpain & are young adults. Our kids 1st 13/16 years of life, our family had a #safetynet, their #pediatrician. He was highly intelligent, compassionate, he challenged the system & in the most authentic sense #partnered with families. #Pain was not a major concern when 2/
Feb 10, 2022 • 6 tweets • 5 min read
@ibdgirl76 What I really struggle w & it’s not just re the lack of care for those in pain & stigma they face, overall the system & many (not all) inds wi not set up to address issuers #patients & #caregivers have re care. There is literally no place to go. Yes, there are 1/@ibdgirl76#patient representatives but they are there essentially to watch out for health facility. File a concern & most times you are not part of the process, nor do you know the outcome. There literally is a lack of protection for #patients. Maybe some clinics or healthcare 2/
On FB I read ‘pearl clutching’ comments that this had occurred two times already. We are in a surreal time, most of us trying to get by. I wonder 💭 how many of those making judgmental comments have struggled to access necessary resources and been placed in a situation where 2/
Feb 6, 2022 • 9 tweets • 6 min read
One thing I have seen weaponized against those who are marginalized and have experienced harm at those in positions of ‘leadership’ is the anger expressed. So very easy for #physicians, #researchers, #therapists, #counselors to point to the anger & exclaim ‘see how unbalanced 1/
this person is?’, ‘see how ill they are?’. When people are in positions where they have been harmed, where they have watched loved ones be harmed & it continues re of their voices, of their pleas for help, when those that are ‘suppose’ to help ignore the harms & gaslight 2/
Feb 4, 2022 • 5 tweets • 6 min read
#Physicians in #NorthDakota who speak 🗣 out on need for necessary precautions have been ostracized and dismissed. #NorthDakota lost 3 state health directors in 1st months of the #pandemic. Public health officials have had hands tied. Those who continue to speak out have 1/
received threats from public and discouraged by state officials. Our state has 54% vaccination rate and #masks are optional with very few wearing. The only time our state imposed a #MaskingMandate is when our #hospitals were beyond capacity & Governor & other officials wanted 2/