Saturday, July 16, 2011

Online Porphyria Support Group... Today's Post

Thank You Lynda & Eileen for sharing your Porphyria experiences!
Your validation has come just when I needed it the most! I have been struggling with my chronic AIP issues for some time now... amen to the fact that people and stress escalate the neurosensory overload! I am at a very difficult point at nursing career has been a huge part of my life... like sand through my fingers I am losing my career... beginning the disability process... it is extremely hard for many reasons... I try with every bit of energy that I have, but I just can't do it anymore... my AIP is triggered easier and easier these days... smells, lighting, motion, the volume, pitch and speed of other people's talking... my body feels as if it is made of lead... I have more and more trouble focusing... remembering details... making connections... the pain in my legs and the random "bee-like stings" is awful (as you know)... I am getting more and more anxious when I am planning to leave home... not because I have a phobia... I have always been social and fun-loving... but because I cannot control the environment and my symptoms will probably worsen no matter how careful I am. It is like living in a bad dream. I try every day to keep a positive mind-set... to look for the little things that make life special... some days are a terrific challenge. I have a husband and twin 8 year old sons... all with ADHD... I am extremely invested in eating right to optimize my health (Gluten Free, Soy Free, Bovine Dairy Free, Organic, Non-Goitergenic, AIP-friendly)... I sauna...I yoga... I use my elliptical exerciser daily when able... I read and research to optimize my wellness... I joined the AIP Clinical Study... I try to gently educate my health care providers when needed... I have had dextrose IV treatments... I have had Panhematin treatments... they usually help with the acute issues but have no lasting effect. To the world outside of my body I look about 20 pounds overweight, tired with dark under eye circles... but otherwise normal... normal... the same as everyone else... they don't understand... they can be condescending and both intentionally and unintentionally hurtful... I appreciate that I am "Preaching to the Choir"... It is so very comforting to know that there are other people who understand what I am talking about... other people who can relate... other people like me. Thank You so very much for being there, for sharing your experiences... and for listening.
Best Wishes~

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