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...

Book Review

The Gerson Therapy: The Proven Nutritional Program for Cancer and Other Illnesses
by Charlotte Gerson and Morton Walker D.P.M.(Oct 1, 2001)
I read this book about 3 months ago...
Pondering the "Gerson Therapy"...
Dr. Max Gerson, long deceased, is said to have studied the impact of food/nutrition on human wellness. In the book Charlotte Gerson (Max's daughter) presents her father's research promoting the use of juiced organic fruits and vegetables in combination with coffee enemas to promote improved immune functioning and in effect improved health. She offers many individual success stories to validate the theory.

The book felt somewhat like a promotional advertisement for "The Amazing Gerson Therapy", but the actual theory itself is completely believable. We are very much a product of what we put into our bodies... garbage in...well...disease happens!

The one thing that I remain "hung up on" is the use of coffee enemas...
Not sure where I stand on this idea...
Although Charlotte gives a convincing argument for the healthful benefits of this intervention...it seems pretty far off the path of traditional medicine (not that that is always a bad thing).

I plan to investigate this thought a bit more.
I am not sure how an Acute Porphyria liver/GI system would respond???

Taking Action Steps

On December 20Th 2010 I changed gears and decided that I needed to help educate physicians about Acute Porphyria...

This is the letter I wrote and distributed to all 40 Emergency Room Doctors, Physician Assistants and Nurse Practitioners at my Regional Hospital...

Dear Fellow Health Care Provider,
Due to personal experience with Acute Porphyria, I feel a strong motivation to improve Porphyria awareness; therefore improving the quality of life for those touched by it. Please read the attached information and complete the online CEU (http://medscapecme.com/case/acuteporphyrias)(allow about 30 minutes).
I have also put together a more comprehensive information packet and will leave it with the Medical Secretary if you are interested in reading it.
Thank you in advance for your professional investment.
Best Wishes~
T. Suzanne Jaynes RN,BSN
Emergency Department Care Coordinator

Each Health Care Provider (HCP) received a cover letter and pre-printed education materials from the American Porphyria Foundation.

Unfortunately, I have not received any feedback to date.

My next intention is to create similar packets for other HCPs in the community.