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 πŸ™‚

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. πŸ™‚πŸŸ

40 thoughts on “What Fresh Hell Is This?

  1. Thank you for being so open and honest about this, I can imagine its not easy being vulnerable like this on the internet.

    I didn’t even know your condition was a thing, I guess we don’t think about things that effect us personally. I can’t even begin to imagine the trauma you’ve been through & the daily struggles you have to go through now too.

    I commend your strength and bravery, not only for speaking about it but being so open and honest & living with this each day. You’re amazing 🀍

    Liked by 2 people

    1. Thank you Olivia πŸ˜ŠπŸ’• I have found a very supportive community of people and I am so grateful for that. They helped encourage me to start this blog and as a result I met another wonderful community of people-yourself included. πŸ™‚β€ It has become easier to be more vulnerable and open knowing that I have a lot of support. We all have our struggles to deal with. I just hope that by sharing my story it encorages others to help spread the same love and support that has been shown to me 😊

      Liked by 1 person

  2. Amy,
    Your story was so moving & I applaud you for sharing such a personal story with us. I helps me have the courage to share more personal stories from my life.

    I had no idea this was a condition in the first place. I’m so glad you talked about this so there is more awareness in this world. You are such a strong woman to be going through all that you have & to adapt so beautifully. This shows you have no idea other people’s struggles & shouldn’t compare to anyone because you have no idea what’s behind closed doors.

    You will continue to get through this. And know if you need someone to talk to, you can always message me. 😊

    – Brittany πŸ’•

    Liked by 1 person

  3. Oh gosh this sounds very difficult and unpleasant. Thanks for sharing your story, I really hope that one day there is a way to treat you so that something as simple as an Epipen is enough to allow you to live a normal life. Wishing you all the best πŸ’–

    Liked by 1 person

  4. Amy, Thank you for being so open and vulnerable here. You are so brave. I can’t even begin to imagine how it must be like for you to live with this in a daily basis.

    I didn’t even know about this condition until today (thank you for teaching me about this condition)

    Sending you lots of love and virtual hugs from me🧑 xx

    Liked by 1 person

  5. Wow Amy. I’m truthfully in tears. I’m heartbroken by your story and yet I found so much strength and courage in it. I applaud your way of uplifting us by sharing this touching story of yours. It really shows the difficulties, ups and downs, and the blazing sense of optimism to keep fighting and hope generously for the best.
    I feel educated reading about the condition, it details, and experience.
    My love and kindness reaching out to you. Stay blessed πŸ’šβ€πŸŒΈ

    Liked by 1 person

  6. So much respect for your openness and strength in dealing with this. It cannot be easy, but not only are you surviving it, you are also able to enjoy your days. Well done. Thank you for the inspiration.

    Liked by 1 person

  7. Dear Amy,

    I literally had tears in my eyes when I came to know about you health conditions in our conversation the other day.

    It’s such an inspiring post for all of us. I respect you for sharing a personal story of this sort. It takes a lot of courage to share such things on the internet. I really hope that God gives you abundant strength to fight this.

    And like I said earlier, you can always text me whenever you wanna talk with someone. 😊

    Sending lots of love your way ❀❀

    Shreya.

    Liked by 1 person

    1. Dear Shreya,

      You are such a beautiful person inside and out! Thank you so much for your words of encouragement. I am so blessed to have supportive people like you in my life. Knowing that I have friends including you to lean on and talk to truly helps make my journey easier to bear on the challenging days. I will continue to find the strength and hope to keep pushing forward. 😊

      Love and blessings to you πŸ™‚πŸ’•
      -Amy

      Liked by 1 person

  8. Thanks for sharing your story. It’s really not easy too express something like this on the internet with everyone. May god bless you and give you strength to fight this. And don’t worry everything would be fine. Take care and always stay happy. 😊πŸ₯°

    Liked by 1 person

  9. WOW I’m so proud of you for being so open and honest- that is bravery in a nutshell!! I know it’s not always easy but even just spreading the awareness I think is so lovely of you!! And truly your strength for the sacrifices you have to make because of what you have to deal with is so profound. Praying that you see improvements ❀ Bless your heart and soul ❀ ❀

    Liked by 1 person

  10. Oh my goodness I am so sorry that you are going through this, it sounds truly horrific. You are so strong and brave. So proud of you for having the strength to share your story. I hope you find a treatment that works soon xxx

    Liked by 1 person

  11. Thank you for sharing your story. You are one tough lady to endure so many scary reactions to your allergy. I applaud your decision to write so honestly about it.

    When I was diagnosed with Parkinson’s several years ago, I kept it quiet, even from my kids in CA. It took me two years to write about it. As you say, it makes me feel stronger doing so. I am blunt and honest about how I feel about it.

    Thank you, thank you for your story and Gid bless you.

    Larry Hoke
    Arlington, Texas

    Liked by 1 person

    1. Thank you so much for reading my post and for your encouraging words! It takes a lot of strength and courage to talk about our health. I didn’t want to feel like a burden to my loved ones. But I realized that they love me and support me unconditionally on this journey. I am happy you were able to open to others about your condition. It is very liberating to write and share our feelings so bluntly and honestly! Blessings to you!
      -Amy

      Like

  12. Wow! This is so scary! I can imagine how traumatic it was for you! I am so sorry you have to go through all of this! Allergies that cause anaphilaxes are awful! I am so scared of wasps and bees, I’ve never been stung but the main reason I don’t want to be stung is that I am afraid I’ll be allergic to the sting. Sending you a massive hug!

    Liked by 1 person

    1. Thank you for reading my story and your support! Getting stung in the behind by a wasp and having an anaphylactic reaction to it was no fun. It was a little embarrassing having to flash my rear end to the doctors at the hospital πŸ˜„

      Like

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