I was diagnosed with mast cell disease in January, 2012. At the time I was diagnosed, I was sleeping through entire days, so brain fogged that I frequently forgot basic facts, and spent most of the time I wasn’t asleep in the bathroom. I was a hot mess. My mast cell specialist ordered the relevant tests but was sure this was some kind of mast cell disease, so he put me on medication immediately.
About two weeks after starting medication, I woke up one morning and felt better. Not 100% better, but better than I had felt in months. A few weeks after that, I went back to work. I was trying to learn the boundaries of my disease but in those first few months, I honestly thought that I might get my life back. I still needed a lot of rest but I felt stronger, happier and much more functional. I call this my “honeymoon period.”
During this time, one of my dear friends came home from Seattle to have a wedding shower with her Boston family and friends. While making duct tape flowers, I decided I was going to go to Seattle for the wedding. I had been feeling pretty good for a few months and figured there was no reason not to. Several of our friends were going so I figured if I got into trouble, there would be people to help me.
So I bought airfare to Seattle and arranged to fly out and share a hotel room with one of my friends. I requested the time off from work and didn’t really think very much about it.
The flight out there was fine. We got picked up from the airport and found a bar that served us grilled cheese sandwiches and tomato soup on a very wet night. We went back to the hotel and crashed. So far so good.
In the morning, we wanted a big breakfast. We walked around Seattle and eventually ended up at an awesome place called Glo’s. I had Eggs Benedict and a lot of coffee. I then discovered that I could no longer go to the bathroom.
I didn’t know exactly what was happening but I knew that it was different than anything I had experienced before. I have had GI problems my whole life. Something was wrong. We went back to the hotel and things got worse into the next day. I called my doctor and he agreed that if I felt it was safe, that avoiding going to a hospital in Seattle was the best idea. I employed some extraordinary measures, put my friends to work and pushed through the pain to make it to the wedding. I’m glad I did, but it was not the trip I wanted to have. It proved definitively that I was sick, that I was always going to be sick, and if I didn’t remember that, I was going to end up in a lot of trouble.
That trip to Seattle is the very first time I gambled that I was healthy enough to do something and lost. It was also the point at which I realized my mast cell disease was seriously damaging my body. The dehydration caused by the flight had turned an annoying but manageable situation into a nightmare. It would have happened eventually, I’m sure, but the fact that I wasn’t near my doctors and home when it happened made it worse. In the few months after I got back, I had scopes and tests and met with a surgeon. My systemic symptoms were being triggered by the pain and poor lower GI function. Less than a year later, I had surgery to place a colostomy.
Next week, I’m going back to Seattle. It feels a lot like I have a score to settle. There’s going to be a 40’s lounge night and a trip to Portland and cute dresses and maybe a death tour. There’s also going to be low histamine food and some flushing and probably vomiting and possibly some anaphylaxis. And maybe I’m going back with a central line, a colostomy, lots of IV meds, several bags of Lactated Ringer’s, ten Epipens, a backpack full of oral meds, healthcare proxy paperwork, sterile dressing change supplies and a best friend who can push my meds if I get into trouble, but I’m going back. Stand up and fight.
I’m coming for you, Seattle! This is going to kick ass.