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 cups of tea...pretty flowers...warm fuzzy blankets...

1 comment:

G-Mas said...

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!)