- Mastocytosis and MCAS
- Interviews
Smiles's interview
How did all start?
It's hard to pin an exact start but I believe in 2001, when I tried Depro-prevera was the beginning of my spiral downward. I had some strange things happen around 2005 and then in 2011 I had a baby and I started having nerve issues and body numbing. Lots of strange pain around my liver. I was in so much pain but the Drs all said nothing was wrong with me and were only throwing antidepressants at me and a couple of vitamins. Constant migraine and some other random things. We moved and that helped a lot with stress and other things. In 2018/2019 I started having facial pain and sinus issues got a lot worse. Near the end of 2019 I start losing quite a few foods and was starting to flush after church or any activity with friends. I was sent to an allergist and we tried immunotherapy and I reacted quickly. After only 2 doses I lost most of my foods and started to be more sensitive to the outdoors. My allergist said he suspected MCAS. Over the next year I would stop being able to handle outdoors except for in the winter months. I was reactive to my family coming home from activities with other people. Even many foods just in the house like bananas, strawberries, etc cause me hives and other reactions. (Anaphylactic reactions) Our whole lives were turned upside down.
Do you already have a diagnosis? How long did it take you to get it?
Yes. I was diagnosed in 2020. It was just under 10 years from when I first started trying to be diagnosed.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I work with an Allergist. He sent me to many specialist to eliminate other possibilities.
What has been the most useful thing for you so far?
Being listened to and believed.
What have been your biggest difficulties?
Getting meds approved by insurance.
How has your social and family environment reacted? Have your social or family relationships changed?
I don't have a social life. My kids and husband have been amazing support for me, and I know how rare that is. They do their best to support and help me, even though it is not easy, convenient, or perfectly executed.
What things have you stopped doing?
Woodworking, hiking, backpacking, hanging out with friends, vacationing, flying, going to family events, cooking fun meals for my family, sitting outside.
What do you think about the future?
I try not to look beyond today but when I do, it is usually tearful. Will I be able to go to my children's weddings? Will I be able to hold my grandbabies? All because of scented products used by others, it's dangerous for me.
So far, which years have been the best years in your life? What have you done during them?
My young life to 20. I was so active, I did a ton of service, loved working with children, I was always outside, hanging out by bonfires, laughing, rollerblading, dancing, building cool things, building our own home. I even started a charity group during some of the painful years, it was hard but rewarding.
What would you like to do if you didn’t have your condition?
I would be able to see my extended family, participate in activities that people just think are normal life. I would be building shelves for our home, helping with yardwork, gardening, travelling, going to my kids activities like karate belt advancements, church, volunteering with the many opportunities in our small town. Spending time with my husband outside of our home.
If you had to describe your life in a sentence, what would it be?
The bare minimum to survive.
Finally, what advice would you give to a person in a similar situation?
Hang in there. Find joy is the small things, do what keeps you safe despite what others think of you. You know your body better than anyone else. Learn to be good with being with yourself.
