What Fresh Hell Is This?

Something I used to struggle with is being transparent about my health. I thought that it’s a topic that makes people feel uncomfortable. But I have learned that by sharing your story, it helps yourself heal and others around you to understand and support you 🙂

It occurred to me that while I have divulged bits and pieces of my medical experiences throughout my blog posts, there hasn’t been one cohesive post where I dump my purse all over the welcome mat. So here is my story. The series of medical events that led me to start this blog. This is the brutal side of Delicate and Brutal.

In July 2018 my life flipped upside down when I had my first anaphylactic reaction after touching adhesive labels at work. Yes you read that correctly-adhesive labels. Something that is benign to so many people. But not me. Because my body is an asshole. Eleven years earlier I was diagnosed with an allergy to a chemical called mercaptobenzothiazole after developing a blistering rash from using nitrile gloves at work. This chemical is found in many common items like rubber products, adhesives, earphones, medical tubing, latex, and gloves. For years, whenever I would come in contact with items containing mercaptobenzothiazole, I would get the same blistering rash. As a result of repeated exposures my allergy has progressed to life threatening anaphylaxis. This chemical is extremely difficult to avoid because it’s EVERYWHERE and it’s not listed as an ingredient on most items. Things like garden hoses, tires, rubber bands, stamps, tape, labels, and elastic bands are all examples of items that I cannot touch because of this chemical allergy. You can’t look at a box of gloves and know if it contains mercaptobenzothiazole because ingredients aren’t listed on glove boxes. Something as insignificant as a rubber band has caused an anaphylactic reaction in me. I have to wear gloves that are known to lack mercaptobenzothiazole everywhere I go just in case I accidentally come in contact with any rubber or adhesive products containing mercaptobenzothiazole.

Over the next year I had 5 more anaphylactic reactions requiring hospitalization, and one requiring intubation. Some reactions were due to exposure to mercaptobenzothiazole, one was due to a wasp sting on my butt (no more booty shorts for me 😁), and the other two were from allergy shots. Because I was now having such severe allergic reactions to multiple things, I was diagnosed with a mast cell disorder. To learn more about what mast cells are and mast cell diseases, click here.

Last fall I became really sick. As sick as I have ever been. I was intubated and on the ventilator in ICU three different times within 3 weeks of each other. In October 2019 I had an anaphylactic reaction after receiving MRI contrast dye. The ICU doctor insisted that I needed to be intubated to protect my airway due to swelling. I was petrified because my first intubation in April 2019 was very traumatic. I was paralyzed but completely aware of the breathing tube, feeding tube, and foley catheter going in. I couldn’t communicate to anyone. I was restrained to the bed. I didn’t want to relive that experience. The doctor assured me that I would be sedated enough so that I wouldn’t know anything going on. I reluctantly agreed to be intubated because I knew if I didn’t, my throat would continue swelling shut and I could die. This time around I was bucking and gagging on the tube in my throat for hours. It took four different medications to keep me properly sedated. All I remember was pointing to my crotch feeling like I was peeing.

Bucking and gagging on the tube down my throat

Just a few weeks later I was readmitted to the ICU for a severe asthma flare and throat swelling. Thankfully the same doctor intubated me again so I felt less nervous about the process. After 3 days in the ICU I was released to go home, but my breathing continued worsening. I ended up back in the ICU on the ventilator again just a few days later. I was in the ICU for a week this time and they did a bone marrow biopsy to confirm my mast cell disorder. That bone marrow biopsy was a literal pain in my ass for a week! I felt like I was repeatedly being stabbed with an ice pick in my butt cheek.

Back on the ventilator again due to my severe asthma and throat swelling

Since 2020 began, I have been hospitalized three more times, two of which required me to be intubated and on a ventilator for throat swelling. I was diagnosed with a rare condition called Hereditary Angioedema (HAE). This condition causes swelling that is not allergy related in various parts of the body. My swelling happens to occur mostly in my face, tongue, and throat. I battle swells once a week on average. Thankfully I now have an IV treatment that I have learned to self administer at home so this has reduced my need to go to the hospital as often. To learn more about HAE, click here.

My supplies every time I have to treat an HAE flare

Self administering my treatment for HAE

A typical HAE tongue swell for me

The last two years have certainly been a roller coaster! My life went from working a full time job, traveling for vacation, visiting family, and having a social life to not being able to work or travel, spending several hours a day doing breathing treatments, and self administering IV treatments. At any given moment my condition can change enough to send me to the hospital. In many ways, I feel a lot busier now that I don’t work because of how much time I spend on my medical care.

I have failed several treatments over the past two years, but I still have some hope for improvement in my health. Although there is no way to cure or eliminate my allergy to mercaptobenzothiazole, the best I can do is avoid it as much as possible, wear my gloves, and carry my EpiPens in case I am exposed to it. I have recently started a new biologic treatment for my severe asthma and I may be eligible for new treatments for my Hereditary Angioedema in the near future. Keeping my fingers crossed.🤞 I am all for trying anything that may reduce my frequency of hospitalizations!

I share my story with the hope that a little more love and support grows from everyone who reads this instead of being afraid and intimidated by uncomfortable topics. As long as my story is still being written, I will just keep on swimming. 🙂🐟