Something isn’t right.
Those were the last words I uttered to my parents before clutching my throat and collapsing into my dad’s arms.
It was lobster night on the Royal Caribbean cruise that my family and I had been vacationing on for nearly a week and I was ecstatic at the thought of all-you-can-eat lobster tails. I quickly ate two tails drenched in butter and was getting ready to order a third when the room started to spin, my vision blurred, and breathing felt nearly impossible.
My dad and aunt rushed me to the ship’s infirmary while my lips turned blue and my eyes fluttered shut, I was barely conscious. I remember being carried down what felt like hundreds of stairs and thinking “there isn’t time. We aren’t going to make it to the doctor, I am not going to make it.”
Well folks, I made it. I spent the next several hours receiving life-saving medical treatment and learned the hard way that anaphylactic allergies can develop and present themselves at any moment. My new allergy apparently didn’t care that I had put on a fancy red dress, high heels, AND styled my hair. COME ON! What poor timing for a girl who normally lives in sweat pants and pony tails.
My sister and I just an hour before my shellfish allergy surprise. Note the fancy red dress. I never wore it again.
Anaphylaxis is not something new to me. I’ve been anaphylactic to eggs and nuts since I was a baby, so the feeling of an allergic reaction is not completely foreign. Over the past ten years, I have discovered new allergies via anaphylaxis several times, more times than I am comfortable with. While I physically recovered from each anaphylactic reaction, my emotional and mental state deteriorated with each instance.
Food gave me trust issues. I used to be tight with food, we had a great relationship. I would stuff my face with my “safe foods” (thank God Oreos are on that list) and other than a cookie hangover, I would be just fine. But what do you do when you no longer know your “safe foods”? What do you do when you feel terrified to put anything in your mouth, unsure if it will cause you to go into anaphylactic shock?
You start having panic attacks, that’s what you do. Well, I’m not sure what YOU would do, but that’s what I did. I started to obsess over my allergies and wonder what seemingly innocent food would strike next. I would eat a bowl of Raisin Bran and think “what if I’m suddenly allergic to raisins, what if this cereal kills me?!” Therein lies the problem- the “what if” thoughts.
The funny thing about panic attacks and anaphylaxis is that they can share common symptoms in their early stages- foreboding feelings, dizziness, shaky hands, difficulty swallowing and breathing, chest tightness, blurred vision, and nausea. Eating caused me so much stress that I would start having these symptoms after ingesting anything. I was having minor panic attacks almost every single day and didn’t know how to stop them. Sometimes the minor panic attacks would spiral out of control and become major ones. There were times I sat in my room, EpiPen in hand, and had no idea if I was having an allergic reaction or a panic attack. Sounds fun, right?
As much as I enjoyed my perpetual game of “am I dying or am I anxious?”, I decided to see a therapist for help. On two separate occasions, medications (antibiotics) have sent me into anaphylactic shock so I knew I didn’t want to take any anti-anxiety medicine. I wanted to tackle my anxiety au naturel. Within minutes of meeting my new therapist, Ken, I exclaimed “I’m not going to take any pills, but I need my anxiety to stop. I know what is wrong with me and I can’t fix it on my own, so I need your help.” He smiled and said “lets do it!”
I didn’t think a therapist without food allergies could understand what I was going through, but I quickly learned that all anxiety is the same regardless of what is causing it. Ken helped me break my anxious thought patterns by asking simple questions like “so, if you are in fact having an anaphylactic reaction, your EpiPen will without a doubt stop the reaction and give you time to get to a hospital, right?” I suddenly felt embarrassed and nodded my head “yes.” Ken continued, “and you always, ALWAYS, carry your EpiPen with you wherever you go, right?” Again, I nodded my head “yes.”
Sometimes it just takes a person on the outside to point out the obvious, to make you realize your paralyzing fears and thoughts are maybe a little bit unwarranted. I finally got it through my head that yes, allergic reactions are scary, frustrating, and sometimes surprising, but they are not going to kill me if I am prepared to deal with them. Prepared means not leaving your EpiPen in your room that is a solid 10 minute walk from the dining room on a cruise ship.
Do I still get scared when trying new foods? Of course! Do I sometimes still get anxious when eating foods I’ve had hundreds of times before? Absolutely! But now I have ways to cope with that anxiety. If I eat something and start feeling funny, I give myself three minutes. Three minutes to “enjoy the panic”, as Ken would say. When those three minutes are up, I either need to give myself my EpiPen or choose to stop worrying about it because it is only anxiety. After all, three minutes is plenty of time for the body to start shutting down if it is a true anaphylactic reaction. Part of what fuels anxiety are the looping “what if” thoughts, so this is a method I have found to stop those. It forces me to say “okay Courtney, you think you’re having a reaction? Then stab yourself with a giant needle and make it stop or move on. Those are your only options.”
Another way I have learned to cope with my food anxiety is to stop eating out at restaurants altogether. With so many serious allergies, cross-contamination is too big of a risk to take. I am proud to say that this March 22nd, it will be three years since my last trip to the Emergency Room for an allergic reaction! Before I decided to stop eating out, I was averaging an ER trip about twice a year. Also, it’s been over two years since my last panic attack. I’d say things are moving in the right direction.
Hospitalized after tasting a margarita at Chili’s- there was raw egg whites in the sour mix. Who would have thought? Gross!
“I’m okay now, mom. Just puffy.”
The most important thing I’ve learned about anaphylactic allergies? They can be scary, overwhelming, and frustrating, but they are not defining. I am not my allergies. As much as I dislike the cliche “challenges build character”, it’s true. I get to be a unique individual with little to no effort. Isn’t that what so many people strive for in life, to be different? I’m that girl who brings a Chipotle Burrito Bowl into a fine dining restaurant and dumps it on my plate so I can eat with everyone else at the table. I’m the girl whose work holds all-company meetings about EpiPen use and safety in case they find Courtney all non-breathy and throat-closey on the floor one day. Silly Courtney.
I get to appreciate and enjoy every single day of my life because I have been so close to having it ripped away from me.
The fact that Courtney doesn’t let her severe food allergies define her is evident by reading her blog. She writes about her observations and experiences in life and has a great sense of humor. When she does write about her allergies, she always manages to keep a positive attitude. Reading about some of her most challenging experiences with food allergies or eczema is humbling, because even on her darkest days she manages to find light and positivity.
What a great post, thanks for sharing this.
-Dana
Thanks for reading!
This is a great article— & very very much how many of us with severe MCS feel every time we leave our MCS safe home—as we don’t know how our bodies are going to react to the CHEMICALS –WE KNOW WE WILL BE EXPOSED TO WHEN WE LEAVE OUR MCS SAFE HOME!! ONLY THERE IS NO QUICK FIX—& WE NEVER KNOW WHAT CHEMICALS SOMEONE ELSE WILL HAVE USED!!
How will my body react—what might I be exposed to???? Will this be my LAST OUTING—MY LAST EXPOSURE TO CHEMICALS???
IF YOU HAVE EVER HAD MCS SOOOOO BAD—THAT IT EFFECTED EVERY ORGAN IN YOUR BODY—& YOUR NERVOUS SYSTEM—& YOU COULD NOT EAT—OR KEEP ANYTHING BUT WATER IN YOUR SYSTEM—& YOUR THROAT SWELLS ALL BUT SHUT— & YOU KEEP DRINKING WATER TO KEEP YOUR THROAT OPEN & IT SETS OFF PANIC ATTACKS TO THE POINT OF NOT KNOWING IF YOU COULD LIVE THROUGH THEM & THE PANIC ATTACKS COME IN WAVES FOR DAYA & WEEKS & —YOU CAN NOT STAND TO HAVE ANYTHING TOUCH YOUR SKIN— NOT CLOTHES—OR ANYTHING–YOU CAN NOT SIT—STAND—OR LAY DOWN—WITH OUT IT FEELING LIKE A BILLION NEEDLES ARE STICKING IN YOU—& THIS GOES ON FOR WEEKS & MONTHS-I HAVE BEEN THERE & DONE THAT & BOUGHT THE T-SHIRT—& YES—I HAVE BEEN AFRAID THAT EXPOSURE TO CHEMICALS COULD TAKE ME THERE AGAIN—I HAD NO CONTROL THAT THE CHEMICALS TOOK ME THERE ONCE—I DON’T EVER WANT TO GO THERE AGAIN—I HAVE HAD A TASTE OF THAT REACTION AGAIN—JUST NOT THE DEEP DARK BLACK HOLE— OF THE EFFECTING MY TOTAL NERVOUS SYSTEM—TO THAT DEGREE AGAIN—& NOT KNOWING HOW OTHER PEOPLE’S USE OF TOXIC KILLING CHEMICALS ARE GOING TO EFFECT ME—& WHAT FOOD I MIGHT EAT—OR WHAT SUPPLEMENT I MIGHT TAKE WILL BE TOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO MUCH OF A GOOD THING & START ME INTO A DETOX—THAT EFFECTS MY WHOLE BODY & EFFECTS MY NERVOUS SYSTEM!! JUST ANOTHER JOY OF LIVING WITH MCS!!!!!!!!!!!!
Oh man, that sounds really challenging. I hope you are able to find the good in it, even if it seems all dark. I’m not too familiar with MCS but I’m intrigued now to learn more about it. Stay healthy!!
I know all to well anaphylaxis. For me it was sulfites on the lobster.
This may be a silly question- but does that mean you can still have lobster, as long as its sulfite free? Is that even possible?
Really enjoyed reading this post, great job Courtney. My mum is anaphylactic, I know after her first attack she had a lot of anxiety about eating food. Thankfully she has it under control & has not had a reaction for a long time.
Thanks, I appreciate it! I’m glad your mom has been reaction-free for a long time, it definitely eases the mind. I know it’s scary for those around an allergic person too, so I bet you’re glad she hasn’t had to use the ‘ol EpiPen
Wow, scary! Hope you enjoyed the rest of your time. It does stink. I am Maryland raised myself and when you become allergic to shellfish at the age of 11, life is the pits…especially in the home of the softcrab
The rest of the time I was feeling a little under the weather due to all the drugs and couldn’t do the excursions I had planned, but I was SO happy to be alive. My mom and I laid in bed for the next two days, just so happy to be together. Nothing like a little near-death experience to give you some perspective!
OoOOoh Maryland raised and allergic to shellfish? Ouch. I grew up just outside DC, so not too far from you! I’ve never experienced the soft crab (obviously) but form hearing people talk about it, I gather we are missing A LOT! Oh well. Living and breathing are good things to do, so I guess we sacrifice
I can relate to this post quite a bit. When I eat gluten or soy I end up with heart palpitations and skipped heart beats. While it’s not necessarily the emergency that anaphylactic shock is, it is still unnerving and very scary. It absolutely does make me scared to eat sometimes and I am spiraled into panic attacks when eating foods I don’t have 100% control over. It’s hard to let go of that control and just try to live and eat and enjoy!