Welcome to the story of my descent into the land of chronic, life threatening illness, this is how I wen from being a relatively normal eight year old child, that just had trouble standing for long periods of time; to being a bedridden 29 year old who can’t eat anything by mouth, is dependent on TPN (Intravenous feedings) for all nutrition, is on continuous ivs, can’t walk, can’t stand, can’t transfer independently, is on oxygen, GTube drain, suprapubic catheter and more.

This is my journey to try to keep up with my ever worsening health and try to catch it, grab it in my hands and make some sense of it. This is my blog trying to reach out to others and say, “hey you’re not alone! I’m going through this hell too let’s connect and vent together”.