Saturday, August 20, 2011

Scary Places Without Support

As a nurse and a caregiver I have experienced the effect of chronic disease consuming an individual's personality and social conversation... I do not wish to be that type of person. I want people to enjoy my presence not be irritated by it. I choose to stay in "controlled environments" whenever I can without saying a word. We recently rented a Lake House for 2 weeks on either side of my daughter's wedding. I spent most of my time inside the Lake House with a cool drink and a big comfortable chair while most everyone else sped around on water crafts, jumped off the dock and played in the water. My husband has brought up the point several times since that "he didn't think I had a good time"... "You hardly left the house". Oh, on the contrary my dear... I loved every minute of quiet, peaceful conversation, beautiful views of both nature and of my family having fun!Outside the humidity, temperature, biting insects, commotion and noise was out of control! Inside my environment (and new found Magnum Ice Cream Bars) was perfect for me!

I try not to verbalize my chronic state of AIP related aches, pains and psychological challenges on a regular basis... it sucks the life out of my companions and it negatively effects me. That said... sometimes... many times I feel so alone in the world... other people who don't have AIP don't understand the nuances of the illness. I have family members with AIP but one is young and only has limited insight into the type of support I seek. I want to talk about how it has effected my life and see if it has done the same to theirs... it sounds so very selfish... but it is not from that part of my heart... I just don't want to feel alone with AIP... it scares me... sometimes I feel like it takes me "down a road" that I may not be able to find my way back to normal... that scares me deeply.
But my siblings with the disease act as if it doesn't exist. I truly am glad that their AIP has remained latent enough to ignore.

The on-line support group I belonged to just closed. The leader's wife had AIP and died last year... he needed to move on to other things.

The "Virtual Group with Video Chat" that New York Mount Sinai is setting up is still in the works.

Some days I feel like an alien... no one around like me.

I was given the name and contact information of a woman with AIP who lives in my state... maybe I will call her...

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