Mind's Seat

picture of Addie smiling

3935153a-f049-42bb-9d83-4ee8ce21d807_galleryThumbI look into the eyes of two year-old Addie suffering yet smiling through her pain after over 20 episodes of anaphylaxis. Addie has to stay home because anything in her environment can cause her to have a life-threatening reaction. It is hard for people to believe that one could have so many times of nearing death, but this is the sad and bitter reality of many people with mastocytosis. I know this because I have mastocytosis. You and your caregiver get worn down telling the story, explaining the condition over and over again, the ER visits where you often have to break through walls of ignorance either wilful or simply because they too do not know. I have had nurses and doctors minimize the seriousness of my condition. I have had my oxygen taken off by a nurse because she made an arbitrary decision that I did not need it…

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