Chrissy's interview
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How did all start?
Started noticing intense facial flushing, periods of sleeping for days, vomiting, hives/rashing, abnormal headache, “cloudy brain” symptoms.
Do you already have a diagnosis? How long did it take you to get it?
Yes, it took approximately a year of misdiagnosis till I was finally sent to a doctor that had limited knowledge but connected me with an educated Oncologist.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I’m currently being treated for MCAS. What has been most successful is the H-1 & H-2 Inhibitor regimen I was placed on along with anti-anxiety medication. This DRASTICALLY reduced my flares.
What has been the most useful thing for you so far?
Finding a Oncologist or “a doctor” that was willing to take the proper steps/tests, achieve an official diagnosis and willing to treat me. I was passed around a lot prior from doctor to doctor.
What have been your biggest difficulties?
Getting my family and friends to understand how quickly a flare can onset and shut my ability to function down.
How has your social and family environment reacted? Have your social or family relationships changed?
I am less social. My family and friends try to understand but it’s a difficult condition to explain and navigate.
What things have you stopped doing?
I was most restricted during the period of undiagnosed. Now, with my medicine regimen, I can do mostly everything as before I got sick. I cannot drink any form of wine and some flares I am unaware of what brings them on.
What do you think about the future?
I try to live in the moment, day to day; even minute to minute (some days).
So far, which years have been the best years in your life? What have you done during them?
Best years were definitely BEFORE I initially got sick in 2015. I had no fears.
What would you like to do if you didn’t have your condition?
Live free of carrying a pill bag full of anti-histamines.
If you had to describe your life in a sentence, what would it be?
Life is a beautiful tragedy, an ebb and flow.
Finally, what advice would you give to a person in a similar situation?
Seek a professional that is willing to LISTEN, UNDERSTAND, ABSORD and EDUCATE themselves on your specific type of condition.
