The goal of creating this blog is to provide insight for those who have not experienced AIP (medical practitioners,co-workers, friends and family); and to empower those who have. I am a Nurse Care Manager/Health Educator by profession. I have AIP. It is my hope that this AIP blog can act as an information portal that inspires connection making... ending in large scale wellness outcome improvements.
Saturday, January 29, 2011
Colicky-Cranky Porphyria
Although my official diagnosis is established as Acute Intermittent Porphyria, I propose that my condition is better known by me as...
"Chronic Colicky-Cranky Porphyria"
My "Acute" times are truly "Intermittent"...but long episodes of dis-ease, generalized ill-feeling, mental/emotional fragility, poorly defined but ever present pain, GI dysfunction, nausea, headaches....and such can last days...weeks...even months.
It is as if my internal environment just feels very "Colicky & Cranky".
*Quiet, low stimuli environments really help but in REAL Life with kids, careers and spouses this intervention is hard to arrange.
*Ativan, Naproxen, Phenergan and Ginger help a lot...but can cause significant drowsiness...caution is needed when health care career and child rearing responsibilities are to be considered.
*Prayer and Spirituality are comforting
*Calls to loved ones helps
*Writing/ Creative Expression helps vent some of the "yuckie feeling"
*Exercise as tolerated definitely helps...but too much and everything gets MUCH worse...balance custom to the situation is key.
*Strict adherence to my nutritional plan helps keep extra health stressors at bay so my body can focus on calming it's current challenges
*Extra Sleep!!! Is one of the best treatments I know.
*Being kind to myself...hot cups of tea...pretty flowers...warm fuzzy blankets...
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1 comment:
Please do be kind to yourself; and also remind your family to be kind to you when necessary! (After all they are males, and we know that they NEED reminding!)
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