Its a Darling Mess…

I am awake at 2:00 AM. I have an appointment in 6 hours, and I am terrified. Not for reasons one may think- I am terrified that my seemingly simple appointment will end in an ER trip in anaphylaxis.

Three weeks ago, I went to a new gynecologist for a second opinion on something that may require surgery. The receptionist had assured me, after speaking with the office staff, that there would be no latex balloons or gloves. I always confirm prior to scheduling because of how severe my latex allergy is.

I put “latex allergy” on my patient portal for pre-check in. I added all my symptoms, including anaphylaxis to the reaction portion. When I got to the office, I had to fill out more paperwork, and made sure to put “latex airborne anaphylaxis” on it.

The nurse called me back and had me walk past an open staff room with a pink balloon arch. This room was across the hall from my exam room. I immediately stopped walking and let the nurse know I would go into anaphylaxis and needed to leave. She shut the door and smiled awkwardly. I explained that it didn’t matter if she shut the door. I would be in anaphylaxis soon and needed to leave. I left through an exit and drove across the road to the ER. Within 20 minutes of exposure, I was using my epipen in the ER.

My inhaler doesn’t help at that point. In anaphylaxis, it feels like I’m breathing through a straw while something heavy sits on my chest, so that I cannot breathe in deeply. It is the most terrifying feeling to not be able to breathe.

It sounds scary too. Wheezing happens first. Stridor occurs as anaphylaxis progresses and my airway closes more.

As soon as the IV Benadryl his my lungs, it’s like the tissues immediately stop swelling. I can breathe a little more. Then when the Solumedrol hits my lungs, my lungs go back to almost normal, and I can take that long awaited deep breath. Sometimes it takes IV Pepcid and a breathing treatment like Duo-Neb to be able to get that deep breath. One time, I had to have oxygen as my fingers began turning blue.

I know when I can take that deep breath that I will be okay. Well, as okay as one can be with a life threatening allergy in a world where people do not take said allergy seriously.

I’ve been in anaphylaxis eight times. It never gets easier. In fact, each exposure to latex makes this allergy worse and the reactions happen faster.

To add insult to injury, that doctor never reached out to see if I was okay. I am a Registered Nurse. I was her patient a few years ago too. I have no faith in our healthcare system anymore.

My husband and I use dark humor to get through this. We have decided that if I die from latex anaphylaxis, my gravestone will say “Death by Balloon.” People in a hundred years will be very confused trying to figure out how I died.

The funeral guests will release balloons while the song “99 Red Balloons” plays in the background- that part is my husband’s idea. If I come back as a ghost, I will carry a single balloon to be even more terrifying. I’ll save my haunts for people who are mean to others and don’t care about disabilities like mine.

See? Dark humor is my kink.

But at 2:00 AM, lying in my bed while my family sleeps peacefully, that dark humor fails me. My anxiety is my companion now. None of this is fair.

My children are traumatized by past anaphylaxis episodes. We are having to homeschool this year to keep me safe. All the local schools use balloons for everything it seems. Even free community events for the youth have them.

My kids panic if they see a balloon at school and will try to avoid coming near me until they can shower and wash their clothes. I once went into anaphylaxis because of latex-contaminated clothing from my kid. Their school at that time banned balloons.

That’s not going to happen in small town U.S.A. where the good old boy system prevails and who you know is more important than actual success. Work accomodations are non-existant in this right to work state. Good luck proving discrimination too! If a local hospital can tell me as a patient “we cannot accomodate your allergy,” despite that being in violation of the Americans with Disabilities Act, there is no hope for justice.

This allergy has taken so much from me and my family. In addition to traumatizing my kids and husband, keeping me from attending my kids’ school events, and isolating my kids from social events, this allergy has stolen my career, my social life, my ability to go to church, friendships due to social isolation, and my peace. I never know when the next exposure will take place. I can never relax in public spaces.

I cannot simply go out anywhere anymore. I have to scan every single room I walk in. I prefer the stores that have glass windows so I can see in before I go in and potentially expose myself to latex.

Outdoor spaces can be traps too. Last year at my tribe’s Labor Day festival, I had to avoid the arts and crafts area, music concerts, and food vendors because of balloon animals. It seemed like everyone and their dog had a balloon animal. I stayed in the camper after an almost exposure while on one of the golf cart transports. It was very isolating. I don’t think I’m going this year- yet another thing I’m losing.

I cannot go try on clothing. I have to research online first to see if the clothing contains latex. Elastics, spandex, and lycra are on my avoid list. I assume it all contains latex unless it says otherwise. Blisters that turn into open sores aren’t worth it. Neither is the ER bill.

I have to ask if restaurants use latex gloves ahead of time. Eating food contaminated by latex proteins results in gastrointestinal issues. I haven’t had any latex contaminated food since I’ve been anaphylactic, so I don’t know how that would go.

I cannot take my kids to indoor play spaces, birthday parties, or even my daughter’s end of the year gymnastics event. My husband has to take them for me with a bunch of moms. Those dynamics impact their friendships too. Moms aren’t as likely to reach out to dads for playdates.

Once my medications were contaminated at the pharmacy from latex balloons. I kept having allergy issues all week (hives, flashing, wheezing) and finally went into anaphylaxis when my child came home with latex-coated clothing from using a balloon at school. I had been unknowingly microdosing myself twice daily with latex proteins and the clothing set me over the edge. My husband had to air out the car for 24 hours, vacuum all surfaces, wipe down everything with a wet cloth that potentially came into contact with my kids, and wash their backpacks, shoes, clothes, and lunch boxes.

My own home is safe. The world is not.

People are not safe either.

They lack empathy and understanding of this allergy. They assume my questions are from a hypochondriac or a Karen trying to create drama. I wish the worst problem I had in this life was being a dramatic Karen.

Anyway, I am going to try to sleep now, if I can.

I will more than likely dream the one where I am in a crowded room. Someone brings in balloons. I try to get away, but I can’t find the doors. People look at me and laugh when I can no longer speak. My hoarse voice is too quiet for the crowd to hear. The balloons get closer, and my throat swells tighter. I’m wheezing, and my Epipen is nowhere to be found. I slowly suffocate to death, and they laugh at me while I die. No one cares.

That’s not just a nightmare. That’s been my reality.

Literally, no one cares unless it directly impacts them. It still shocks me: the lack of empathy.

The world we live in where the political climate in the U.S. is so tumultuous. The hate everyone seems to openly display for people with disabilities, LGBTQ+, diversity/minority groups, religions outside of MAGA christianity… it shouldn’t surprise me that they don’t have empathy for my allergy either, but it does. Because I could never think that way.

“Their reaction says more about them than it does about you.” My mom told me that once. Sure, but I still have to live in this life and this body. I would prefer to live in a world where disabilities were actually accomodated, and people treated people the way they wanted to be treated.

Before I hit publish, I think one minor change is needed to a previous statement. My gravestone will instead read “Death by Balloon because (insert name of person or business at fault) exposed B to a balloon when she had a life threatening latex allergy.” Then, I will haunt them until they show remorse.

XOXO,

B.B.