Anaphylaxis is a life changing condition, a powerful force in one’s life that is invisible to others.
You will find my allergen in a high percentage of food available in the grocery stores, could be anywhere in restaurants, but medicines are the real terror as they are not required to list non-medicinal ingredients and usually don’t. I’ve held up operating rooms while they searched for complete ingredient lists for anaesthetics because they failed to prepare for my medical care. I always provide complete information when I am interacting with doctors, nurses and hospital staff, so they know ahead of time about the allergy and can prepare. Dentists have been particularly indifferent to the allergy, which has been very dangerous because most freezing injections have sulfites in them; not all, but most. I’ve faced my own death a few times in the dentist’s chair. I’ve also come out of anaesthetic after surgery and been denied painkillers because no one prepared for my medical care… really resented that one a lot and felt it deeply, as did Attila who stayed by my side and watched me suffer. When I go into hospital I write allergen warnings on my body with permanent markers and wear a self-administered allergen warning label on my forehead because I might not be conscious to protect myself from negligence. I’ve had a few close calls.
Hospital emergency care will not allow an advocate to accompany me while I receive health care. I tried to find a way to permit an advocate to accompany me when I receive care in hospital, contacted all kinds of health care associations etc., but have come away without any answers. After running around in circles for a few years trying to put something in place so that I needn’t feel terror about medical care, I gave up trying. I am but one person and my dilemma is of no interest to anyone but me and a few others who are seriously affected by this allergen. What I really need is legal right to have an advocate with me at all times when receiving medical care, so that if I am not functioning at 100% someone else is looking out for me and protecting my life. As it is, I fear for my life every time I enter a hospital as a patient.
Socially isolating and very tiring.