This one is personal … #LOVE in the context of #raredisease - specifically #AdrenalInsufficiency.
It’s been a tough month with RSV and a bad case of shingles without a rash - add #primaryimmunedeficiency, neuromuscular disease (#LEMS), profoundly flat burst in adrenal function, and it’s tough.
The final straw…kidney stones (no less than 10 all at once). The hospitalist insisted, though, that there was no reason for the excruciating pain.
Oh, did I mention the fractured ribs?
But through it all, LOVE was the constant river nourishing me even when I went through Christmas in isolation at the hospital due to a potential disseminated zoster infection.
I’m aligning myself with LOVE in 2025, and sharing the miraculous ways that GODasLOVE shows up in my life.
It’s not about taking away the struggle. Unfortunately many feel that they are doing something wrong when crying out to God for help and still the illness persists.
In my experience, I’ve come to believe that the illness isn’t God at work; however, God stands with me every step by pouring forth the courage to endure and transforming the pain into something ultimately beautiful. Theologian Paul Tillich called this #TheCouragetoBe - otherwise known as #Grace.
I’m grateful for the LOVE that I have in my life; the emergency solucortef injection that keeps me alive in Adrenal Crisis; and the exceptional healthcare providers that have given me the knowledge of how to care for my disease at home—because in the hospital, they’ve nearly killed me so many times.
On this last statement:
If you have any influence in a healthcare system, please check your care protocols for Adrenal Crisis patients and ensure that all ER and hospitalist staff are educated properly.
Know the signs, including cognitive impairment and difficulty speaking; patients are not intoxicated.
#EDIE reports from PointClickCare must be reviewed for proper coding so that Adrenal Crisis is listed, not “abdominal pain” or other low acuity/high utilization diagnoses that might flag a patient inappropriately and delay treatment.
If possible, put the patient’s care plan into EPIC under the Adrenal Insufficiency Diagnosis Tab.
When the objective care criteria is tested against real patients like me (I present atypically), the injection is withheld and I risk dying.
People still die of this disease. People like me are afraid to go to the hospital, lest we be treated like drug addicts, disbelieved, or denied the medicine that brings us back to life.
If there’s any question about what constitutes a crisis, please be in touch with one of the National organizations. This is something we can do to save lives today.
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