I know it’s been a while since I’ve posted, and I apologize for being so negligent; things have been crazy in this girl’s life. There’s been an engagement (Congrats bro and to be sis!!!), friend drama, and one of the scariest reactions I’ve ever had; not to mention that the normal reactions have been getting worse and worse. It’s been so much, and I’ve been sleeping, hiding, and doing a lot of crying to be honest.
So, my brother is the best brother in the world. He may be a pain in the ass, but he’s my pain in the ass!!! For real though, he’s taking care of me. When he proposed, I have to admit that I was stressing over his wedding. I have so many new triggers, and I don’t want to ruin his day. He and his fiance are planning their wedding AROUND my triggers. It’s so comforting to know that there are people out there with empathy. They want to have an outdoor wedding; the issue with this is I’m allergic to the sun, and I can’t be in heat for very long. Granted I’m IN the wedding, but he even said, “I want my family there. I want her to be safe” Which, of course, gave me tears. The place that they’ve fallen in love with is FABULOUS! They have both indoor and outdoor spaces for the lovebirds to get married in; if it’s nice out, we go outside. If it’s hot and gross outside, we stay in. It’s pretty awesome. He even told them about a few other triggers that can be avoided. The best part, is he’s agreed to have absolutely no artificial scents at this wedding. This includes perfume, cologne, smelly aftershave, smelly hand lotion…etc. There will even be people at the door smelling everyone to make sure nobody sneaks in with a scent that could hurt me. If someone happens to show up wearing a scent, they’ll be told to turn around, change, shower, and then they can come back. This is just so sweet and amazing. It’s definitely lifted some of my own stress off my back, to know that I’ll be safe at this event.
People don’t know how to be friends anymore. I’m going to say it. They’re so focused on not missing anything on social media, that they forget that they’re with people in the first place. It’s gotten so bad with some of the people I know that I’ve texted them to get off their phone when they’re sitting right next to me. (You folks know who you are!!!) The one thing about social media that I hate is the fact that everything that you would normally talk about, is blasted in your face and there’s no interaction. I’ve had people abandon me because of how they interpret something that I’ve posted to Facebook, or because they read something and immediately assume something that had nothing to do with them in the first place. The rudeness of people is simply amazing, and I’ve had to cut ties with some people because of how rude they are. I’ve tried to ignore it, but I can’t do it anymore. I’m done with the rude!
So, this reaction was absolutely terrifying. I had been having hives for a few days before this happened, but I thought they were pretty controlled with the Benadryl. How wrong I was. I had been exposed to a number of things that are triggers leading up to the reaction–smoke, perfume, toxic foods, and then the mystery triggers–and I think that what happened was my toxicity level just reached it’s point and my mast cells went to town. I went from fine to absolutely no voice and not being able to swallow or breathe right. I immediately Epi’d myself and we went off to the hospital. The emergency department that I love is about 20 minutes away from my house. Which is fine; usually when I use my Epi, there’s more than enough time to get to the hospital. This night, not so much. We were a couple miles away from the hospital when I started to lose my voice again, and by the time I checked in, I couldn’t breathe right either. I told the lady checking me in that I was in the middle of anaphylaxis, used my epi, and it was wearing off and she went to town. She immediately grabbed a nurse, and the nurse put me in this trauma room. I had a few nurses working on me. One was hooking me up to machines, while the 2nd was grabbing a 2nd Epi to use on me. It was really scary. I was getting light headed, it was harder and harder to breathe, but I knew I was in good hands. Once the 2nd Epi kicked in, I was able to breathe and swallow again. My voice came back also, which was so good. The Epi is pure adrenaline, and I seriously thought my heart was going to beat out of my chest. It normally pounds after the epi, making me jittery, but this was a whole new ballpark. Nevertheless they were able to relax a little, but if they hadn’t of given me the right meds immediately, the 2nd shot would have worn off and we would have been right back to square one. Thankfully, my nurse didn’t need doctor approval to get my meds from the cart, and I got my IV meds that stop the reaction. All of this happened within 5 minutes of walking in the door. It was amazing how much of a well oiled machine they are. Once I was stable, I was able to look around the room. This room was CRAZY! There was so much equipment with us, and I wanted to play with it all. (I’m a healthcare nut…don’t judge me!!!) My eyes landed on a cart of supplies and it caught my attention; on the bottom of this cart it had 2 drawers I’ve never seen before–one had “postmortem” on it, and the 2nd of the drawers was a locked drawer with the words “evidence collection kits.” Seeing that really hit me. It became very real…shows like Grey’s Anatomy and Law & Order: SVU are REAL. It was a crazy thought and I couldn’t help but think that I’ve never thought about what happens after someone dies or is brought to the hospital…that things like that don’t happen in MY neighborhood. It was eye opening. ANYWAYS, I was able to move out of the high tech room and into a regular room soon after and only had to stay a total of 4 hours, which is a pretty quick visit compared to some of them. I felt like I had been hit by a truck for the next few days (totally normal…) but I’m ok.
This reaction really proved to me just how sick my body really is. In the span of 1 1/2 years, I’ve gone from loving my smelly lotion and perfume, to being so allergic to it that the tiniest of exposures results in anaphylaxis. It’s CRAZY how insane my life has become. It’s gotten to the point where it’s hard for me to even leave the house without fearing a reaction. My anxiety has gotten worse, and having so called “friends” come and go without a look back has been very hard. It’s been proven that stress is the #1 mast cell trigger, and with the amount of stress in the past few months has been so ridiculously high; it’s no wonder why my body is in a constant state of attack. Now that we’ve found the place for the wedding, I’m more relaxed because I know I’ll be safe.
Boy this is a long one; it’s almost a novel! I see my MCAS guru next week, and I cannot wait for this trip. I simply can’t wait to learn more about my body, and get going on more treatment options.
I love you all. Thank you so much for your support!
All my love,