Real-Time Life w/AIP

As initially proposed, "the blog plan" is to go "real" starting tomorrow... September 17, 2010, the 2 year anniversary of my official AIP diagnosis. As life would have it (and as the nature of the disease process goes) I found myself hospitalized the night before last due to an acute attack.
As previously shared, I spend my every day life as a Nurse Care Manager and Health Educator. I manage my own disease and direct my educational goals with my, "professional" eye.
However...
As I lay awake to the high pitched squeeeeak of my IV infusion pump my thoughts slowly and gratefully cleared.
I began to evaluate the situation from the patient perspective...

- How scary it is that my health care providers know so little about my disease process...
- How my heart would race then flip/flop like a fish out of water...
- How terrified I felt earlier that day when I could not understand ordinary words, how to use my cell phone to find a number, or remember how a commode flushes...
- How I went without food/ disease essential carb-loading from 10am til 8pm... (because dietary staff do not understand the connection between AIP and carbohydrates)
- My Health care providers were very kind, and provided excellent care within their current knowledge base...
- I have no desire to offend or alienate my caregivers in my time of need... their collaboration is vital to my recovery!

Now the day after discharge I am at home, the house is quiet and I am reflecting on my recent experiences. I try to learn from every life experience. How can I improve things for the next time? My next time or any one's next time...
My intervention was to outline and post "AIP Nursing/ Healthcare Provider Essentials". I will offer a print copy to each of my doctors and to the nurses on the unit I stay on in the hospital. To improve my future treatment even further, I will carry a printed copy with me in my shoulder bag and keep a copy in my automobile with the rest of my "Emergency AIP Information".

My Goal:
By providing direct information in an easy to follow format health care professionals are empowered to gain comprehensive insight into understanding AIP assessment and treatment creating optimal patient outcomes.