Today a nurse told me I should live in a bubble.  She came to this conclusion because of all my allergies when I asked her to remove all the latex from the exam room before I entered it.  She seemed only half kidding.  She went on to interrogate me how I manage to survive going into public places.  Ouch.

I do have some very severe and even life threatening allergies.  It took multiple trips to the ER and at least twice that in doses of epinephrine to figure out I am severely allergic to yellow dye.  That one is very difficult to deal with.  It’s in everything… foods, medications, cosmetics.  And no one has ever encountered my that allergy before… especially not on a life threatening level.  I must check every ingredient on everything.  I often speak to the managers in restaurants to ensure that the food won’t contain any yellow dye.  Often I get them to bring out the ingredients that go into the food if they come in packages so I can check them myself.

It took two reactions to the pain medication dilaudid before my doctors and I figured out that it was the medication that caused my throat and air passages to swell until I was gasping for air.  Fortunately, on those occasions, several doses of epinephrine, benadryl, and steroids were able to get that under control and I was able to go home from the ER the next day.

As frightening as all those are, it’s my allergy to latex that scares me the most.  Latex is everywhere… especially in medical settings.  And having spent so much time in the hospital, I’ve had plenty of opportunities to be exposed to latex and increase my allergy to the point that merely getting to close to it could cost me my life.

I discovered this about a year ago while I was in the hospital for a flare of my pancreatitis.  I hadn’t been able to eat for several weeks so I had a procedure to have a feeding tube inserted.  When I woke up in recovery after the procedure I felt like I was drowning.  I couldn’t breathe.  I could barely talk but I managed to let the nurse know that something was very wrong.  Since I was still coming out of anesthesia I passed out again.  When I woke up the next time I was surrounded by doctors who were asking me if it was ok to put a tube down my throat to help me breathe, poking me to get blood gasses, giving me tons of different medications none of which were helping.  As I lay there fighting harder and harder to breathe, running out of the energy to continue, I really thought that I might die.  Each time I woke up there seemed to be more doctors standing over me.  I had never been so scared in my life.  When I woke up again I was being whisked off to the ICU.  I was started on drip of epinephrine and put on a machine to help me breathe.  That finally seemed to turn the tide for me.  I spent that night in the ICU, and the next morning I found out that the whole ordeal had been caused by me breathing in spores of latex from gloves being used on the patient next to me.  I still have nightmares about it.

Living with life threatening allergies is all about preparing and checking.  You’ll all be happy to know that I’m going to be starting my new medication Rituxin on the 17th of this month (being provided to me for free by the drug company itself).  The scary part (aside from the potentially life threatening side effects of the medication), is that I’m going to be getting it in a room full of other infusion patients.  In other words, there will be latex EVERYWHERE.  However, I’m making special arrangements with the head nurse of infusions to make sure that I will be as safe from latex exposure as possible while there.

Which brings me back to today.  Now where ever I go I make sure latex leaves before I enter.  Gloves, balloons, rubber bands, you name it… it all has to go.  And if god forbid something goes wrong I always have my epipen which should buy me enough time to get to the hospital.   Because despite that nurse’s rude comment, I don’t plan to spend my life in a bubble.  Life is way too short for that.