2. Mastocytosis and MCAS
3. Interviews

Deb Vickery's interview

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How did all start?

When I was 26, I moved into a new building and I had blisters on my body from sun exposure. The dermatologist didn't know what I had and gave me a body wash for scabies. Of course that didn't work. I had several more break outs when I'd be in the sun, but once I moved out of that new building, I have not had that rash since. I would not find out that it was MCAS until I was 61.

Do you already have a diagnosis? How long did it take you to get it?

Yes, I have a diagnosis. It took 17 years for a diagnosis, however, due to a clerical error, I didn't know the diagnosis for another 5 years, so it really took 22 years.

For what medical specialties have you been treated? What has been the most useful specialty for your?

Allergy testing has been the most useful since it shows what foods to avoid.

What has been the most useful thing for you so far?

Being disciplined, always having a back up or escape plan, and having a mindset that if I have to leave, then I'll leave and be OK.

What have been your biggest difficulties?

My biggest difficulties are with lack of freedom due to Multiple Chemical Sensitivity LMCS_ as well as having MCAS. I am not free to go where I want, when I want, and how I want due to fragrances everywhere.

How has your social and family environment reacted? Have your social or family relationships changed?

My husband has been very supportive. All my family cares, but some don't take it very seriously. Socially speaking, my options are limited to people who already know and love me and are willing to change their everyday product usage. it's hard asking people to do that, but the ones that care, do it lovingly. I need new friends, but they are hard to find since starting a friendship with "I think your cool, but in order for us to hang out, you'll have to go fragrance free". i

What things have you stopped doing?

I don't fly, go to concerts, movies, to friend's homes, nor do I invite people over. BUT, I have become a River Ranger with the Tonto National Forest, which is a volunteer position and is conducted outdoors. This has been a lifeline for me. I love nature and I can interact with people as, for the most part, they don't show up to the river with scents on.

What do you think about the future?

I think I can get myself to where I am not as sensitive and be able to have my freedom back. I am working with an allergist, primary doctor, and a Naturopath and have hope. Since I am so disciplined, I can do whatever I need to do to get there. I am hopeful about the future.

So far, which years have been the best years in your life? What have you done during them?

There have been good years throughout my life and struggles as well. Marrying my husband, we were just the two of us for 5 years, when our daughters arrived 2 years apart. Being their mother has been amazing. Now, I do not work, so I have time to continue to grow as a person, to be the best wife, mother, friend, advocate, and to focus on lowering the toxic load so that I have the freedom I desire. I am happy by nature, so life is good and when it's not, I remind myself that without sorrow, I could not know joy.

What would you like to do if you didn’t have your condition?

I'd get on an airplane and go visit my mother in Oregon and then take a flight to Denmark to meet relatives and understand more about my heritage. I'd go to concerts and movies, and accept the invitations that have stopped coming since I never accept any.

If you had to describe your life in a sentence, what would it be?

I am one tough lady who is disciplined, God loving, loves growing, and will never give up trying. I make lemonade out of lemons.

Finally, what advice would you give to a person in a similar situation?

Do what you CAN do. Be sure to get sunlight and fresh air everyday. Red light therapy can be done at home with a face mask. Just 15 minutes a day is good for your whole body, though you only have it on your face. Take a small, or big, walk every day, even if indoors. Nature is where you came from, and nature will set your mind at ease. Seek God there. Keep moving, keep hoping, keep smiling, keep questioning, keep exploring, keep loving yourself.

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