This picture takes my breath away, it reminds me of my kids. While they have disagreements, they have formed a unbreakable bond because of the disease they share. This picture sums up their relationship. Two memories distinctively come to mind. The first was when they 1/
were very young. About the age of the children in the picture. I had the flu, my husband was out of town for work and my son woke up in a flare. I tried to comfort him, to take care of him but I was so ill. My daughter hearing the commotion came up. She immediately 2/
took over. She retrieved a bowl from the kitchen & took her brother by the hand into the spare bedroom. For the next several hours she rubbed his back & stomach. She held the bowl while he emptied the content of his stomach into the bowl & there was nothing left. She did this 3/
until he fell asleep. She did this instinctively & with a maturity a child her age should not have 💔. The other memory is from after my husband had passed. They both needed ERCPs. We travelled to the speciality hospital. My son’s procedure was first. My daughter & I waited in 4/
the operating room lobby, waiting to be notified that his procedure was complete. A nurse came out & called my daughters name instead of mine name. 5/
I approached the nurse saying that my daughter had that name but I was the parent. The nurse looked at me and said that my son had repeatedly requested his sister, was insistent that SHE come back to the recovery room. Even though she was ‘too young’ to go back 6/
the nurse allowed her to come back to recovery. The gesture meant so much. As soon as her brother saw her, he reached out for her, grasping her hand. They stayed there, holding hands until it was time for her procedure. It was hard to pull them apart 7/
I hate that their lives have been made up with experiences like this instead of the ‘normal’ actities of childhood & adolescent yet I thank God they have each other. Their bond is impenetrable I hope for the day their is a cure for #hereditarypancreatitis 8/
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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?