Bonnie's interview
Error
How did all start?
I was 3 years old and contracted Rubella. After becoming severely ill, I came down with pneumonia, bilateral pneumothorax, and developed severe esinophilic asthma with several food, drug, environmental allergies including urticaria when exposed to cold temperatures
Do you already have a diagnosis? How long did it take you to get it?
I did not get a diagnosis until adulthood when I basically told the doctor that I get hives from cold when they asked if I am allergic to anything when they updated my chart.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Esinophilic asthma is being treated by an immunologist. She also believes that the medication, Nucala, which destroys esinophilis, may reduce the amount of reactions I have to the cold temperatures.
What has been the most useful thing for you so far?
Dressing in layers and wearing a mask when temperatures are lower than 50°F
What have been your biggest difficulties?
Grocery shopping, believe it or not. I am not always dressed appropriately for the cold section of the store. I forget to wear a jacket or long pants if it is 90°F outside and 55°F in the freezer section. I will develop hives, rapid heart rate, confusion, dizziness, and ultimately anaphylaxis if I don't use rescue inhaler and EpiPen.
How has your social and family environment reacted? Have your social or family relationships changed?
There are people in my immediate family who sometimes make fun of me. Coworkers and friends have teased me as well. For example, I will be leaving work, it is 50°F and rainy outside and I am wearing my hat, gloves, mask, and raincoat and a coworker laughs at me and says, "What are you going to Antarctica? Hahahaaa!" I've learned to brush it off, but it still hurts my feelings.
What things have you stopped doing?
I've been avoiding grocery shopping as much as I can by using Walmart delivery, but unfortunately, that costs me about 15% more with delivery charges and tip.
What do you think about the future?
I think it will ultimately end up killing me one day. If I cannot be my own advocate due to illness or my mind going, I fear I will one day be admitted for dehydration, or other illness and they will have no idea about my condition and use too cold of IV solution. That will cause anaphylactic shock and I don't believe they would even know what caused it so they won't know how to reverse it.
So far, which years have been the best years in your life? What have you done during them?
My 20s were the best because with each pregnancy, I have way less reactions. I finally got to live a "normal" life!
What would you like to do if you didn’t have your condition?
I wouldn't take anything for granted. I would enjoy being out in the snow, a football game, a baseball game, grocery shopping, just hanging outside.
If you had to describe your life in a sentence, what would it be?
I am battling every single day to stay healthy.
Finally, what advice would you give to a person in a similar situation?
Find a support system. People who understand your condition, accept your condition, dont make fun of you ,belittle you, or tease you. Stay with those who accept who you are and dont have unrealistic expectations of what you can and cannot do.
