During my last allergy appointment, I learned that one of the study participants developed an extremely rare and serious auto-immune disorder as a result of participating in this research. There is no cure for this condition at this time. I dedicate this post to my stricken fellow allergy fighter. I am grateful for their sacrifice and their bravery in being part of this research. Participating in highly experimental research is extremely risky and unpredictable.
Why do I choose to keep enrolling in studies, risking my health and possibly my life? I can’t not do it. This disease sucks. There is so much of life I have to be extremely careful about. I saw my friend’s toddler yesterday. He was super cute, and I wanted to give him a hug, but I couldn’t. He’d been eating peanut butter and got it in his hair, and skin, and probably clothes. I had to change out of my clothes as soon as I got home, because I was sitting in the area he was playing in. If I touch peanuts, my eczema immediately reacts and my skin starts to bleed. There is severe pain and itchiness along with with the blood. I wanted to avoid that. Normal everyday activities I’m enjoying become suddenly hazardous. I hate it and want it to stop. I want it to stop for everybody. I don’t want this disease to kill any more people. This is why I fight.
The following blog post was originally written in September of 2016.
I wrote about being a volunteer research participant for a new experimental treatment for peanut allergies in my last blog post. I was really excited to be part of this. I was scared, mostly because being part of this study involved eating peanut protein, but I was thrilled to be part of the research to help find a treatment and cure. Yesterday I found out that I have been disqualified for three months. They may not still be enrolling new participants in three months. And today, I am really bummed out.
Most of the mental energy I spent was dealing with the terror and fear of intentionally doing something that might kill me (eating peanut protein), and then after that of course, trying not to die (anaphylactic shock). Mostly. But today, I am sad because there was this other part of my mental energy that I was mostly not aware of until now.
I was secretly hoping that the treatment would work and that my life would be more normal, and my peanut allergy would be less severe. Being less allergic to peanuts would mean that I’d be able to eat at Chinese, Vietnamese, and even Thai food restaurants! My good friend was planning to take me to a Thai place where she told me she really wanted me to try a few delicious non-peanut containing menu items. I guess I won’t be able to eat that yummy food.
it’s made on the same equipment as peanuts. A trace amount could set off a potentially fatal reaction. I guess I won’t get to eat that chocolate.
And most of all, I was excited for the possibility of being less allergic. I was thrilled about being more like other people, having more options for food available to me. Living in less caution, and vigilance. Eating is a relaxing and nourishing experience for people. I want eating to be more relaxing and nourishing for me, instead of a life or death game of Russian Roulette.
I just want to enjoy the normal, nice things people do, like when someone brings a dozen donuts and pastries for their coworkers. I have watched my coworkers and friends eating these treats, with pleased and happy looks on their faces. I cannot eat the donuts. I must not eat that food. Cross contamination. The donuts could kill me. To me, that box of donuts is like a box of venomous spiders and snakes. That table everyone buzzes around is not a safe place.
It would be nice to feel a little more safe.
After my monster allergic reaction for science, I went home and slept. I called out of work the next day. I was too sick and weak. My asthma flared up terribly. I took prednisone. My asthma got a little better. I went to work the next day. My asthma was still flaring up. I took prednisone, as directed by my former primary care doctor, but less. The next day, I still struggled to breathe. My lungs were pissed off that I ate peanuts. I took less prednisone then I had taken the day before. I took half a prednisone the day after. I couldn’t not breathe. I didn’t want to return to the hospital. I would have ended up with a bill for a nebulizer treatment and a prescription to take prednisone. I’ve been hospitalized dozens of times for my asthma. I know the drill. I know how these things go.
When I returned to the next peanut experiment appointment, I was honest. About my terrible asthma and about taking prednisone. The doctor said that this disqualified me from the study for three months. Which isn’t fair because I only had to take that awful prednisone because I ate peanuts for science. But the rules are the rules. And I still think that honesty is the best policy, and I am going to continue to be extremely honest always.
Would I have taken the prednisone if I had known it was going to prevent me from being in the study? I don’t know. Probably not? I’m not sure. Large red spots appeared on my body, and disturbing sensations of itchiness occurred several times in the days following the allergic reaction. I struggled to breathe and I wheezed through suffocating asthma. My immune system was still trying to kill me. The prednisone seemed like the only way of telling it ‘Hey, calm down, stop reacting, I don’t want to die.’
The medical and scientific team told me that my reaction was the worst they had dealt with so far in this study. They are going to make some adjustments to make the study safer for participants in the future. Medical science and I learned a lot from my severe allergic reaction. I may be on the sidelines for now, but I am still cheering for my awesome team!
Yesterday, I hiked up Skyline trail on Mt. Rainier. I laid on a frozen lake of snow and ice.
The view was incredible. My life is amazing, and I continue to live it as fully as possible. I hope that I’ll be able to participate in three months, but even if I’m not able, I will continue to advocate, to write, create, and be awesome. Thanks for reading everybody, and please subscribe to my blog, -it’s free!