My life has been very different since my most recent "Acute" Porphyria episode began... my body's response to in-hospital treatment did not follow the expected "bell curve" and the way in which I interface with the world is now significantly changed. Just a short time ago I was dreaming up ideas of furthering my nursing career. I considered a Doctoral bridge program that when completed would allow me to practice as a Psychiatric Nurse Practitioner and Behavioral Health Clinical Specialist. I thought I would be able to help people better manage their chronic health situations... providing them the support, expert guidance and professional collaboration that I wish I had available to me right now.
Today my reality is quite different than it was the day I wrote about becoming that person... my AIP has contributed to an internal state of constant "dis" "ease"... This past 12 months of writing in a "nut shell"... when my AIP is quiet... I want to do it all! I enjoy living life passionately in forward motion... going...doing...seeing...smelling...touching...experiencing it all! I feel as if I have been let out of a cage... I crave "real" living... being the "real" me!
Then I do too much or some life event triggers another round of increased illness.
It is extremely difficult to ride this cyclical, whirling dervish, called, "life with AIP" and not want to give up hope. Depression, anxiety and suicide statistics are higher for us with AIP... I have no idea what the biochemical contribution is... but heck just read and listen wouldn't anyone have issue with this un-chosen lifestyle???
I went to see my Primary Doctor a few weeks ago because I continued to have a lot of neurosensory, cognitive/psychiatric/emotional, insomnia, and pain. We talked about my medical situation as she evaluated me for over an hour! One thing she said to me... well it was more of a question... "how is your spiritual life??". How is my spiritual life... hmmm... actually my spiritual life is the only part of me that feels Well! Without the belief that God is with me in my heart... I would have succumbed... succumbed to it all, a very long time ago. I used to feel as if I were being punished... and that is why I would be made to feel so miserable... that feeling is not a useful one and only serves to make matters worse... instead I now try to tell myself that God has a purpose for my "life's journey" and it is not always about me! I wish I never came to know the awful nuances, the pain, the disruption and the hopeless loneliness of societal ignorance related to active Acute Intermittent Porphyria (AIP)... but I have become intimately aware of all that is AIP... and I am forever grateful that my "Spiritual Life" is healthy!
My Primary Care Physician (PCP) is like none other I have ever known... each visit is at minimum one hour... evaluating and collaborating... investing in trying to help my mind, my body and my soul. The time has come for me to make some big changes in accepting and taking care of my mind, body and soul. She assisted in setting up a Medical Leave of Absence from my job. I agreed to begin taking medication on a regular and consistent basis. We agreed that these steps are necessary at this point in time. I began taking Neurontin 300mg 2x daily, and Xanax XR 1mg 2x daily. Taking daily medication is a big step for me... but without some help I felt as if I were headed back to the hospital... either 2 South for Hematin... or 3 South for psychiatric stabilization.
No comments:
Post a Comment