“There is no greater agony than bearing an untold story inside you.” ~Maya Angelo
One Month Before Our Nuptials
With his limp body in my arms and me imagining the worst but praying for the best, I screamed up to our neighbors or anyone who might be able to hear my cry for help to call 911. By the time the medics arrived, my husband Frank was in full anaphylaxis and barely responsive. They hooked him up to a heart monitor, jabbed an IV in his vein and pumped him full of epinephrine and Benadryl and rushed him off to the ER.
This would be the first of about 20 more anaphylactic reactions to come.
This will not be an easy story for me to write. It will require walking into the deep and the dark of a very painful and terrifying reality for our family–one that leaves its scars and has us picking ourselves up by the bootstraps each and every time, rising from the ashes of profound fear and trauma.
We are all given some sort of cross to carry in this life. Even the seemingly “perfectly happy people” have something they need to contend with. A pain-free life is promised to no one. This is our monster hiding under our bed.
Maya Angelo had it right in the quote above. It is a painful “birthing” of sorts to bear an untold story–an excavation of the deepest parts of ourselves that we keep private and process on our own terms and in our own time.
Living with Life-Threatening Food Allergies
This is our truth–part of it–and I choose to heal and be free from its haunting, damaging marks.
None of us know our time frame here on planet Earth. For all I know, today is my last day, or tomorrow, or the next, or not for 10,000 more. We are not guaranteed anything really, other than this very moment. Living with a daily, life-threatening condition that revolves around all things food is a sobering reminder of life’s precious and tenuous nature.
I am choosing to write about the terror and storm that erupts inside The O’Grady Home—the resulting PTSD (post-traumatic stress) and the process of recovery and healing. I believe in the power of “flipping your challenges” of your past (or present) and changing them into something positive. There is value in transforming our biggest vulnerabilities into our greatest victories. It is a mighty undertaking and a call to see what you are made of when you choose to stand strong and walk forward in the face of tough times.
Ultimately, I hope that in the candid sharing of this one part of our story, that I will help others out there that might be dealing with a similar situation.
My husband Frank has had at least 20 near-death allergic reactions since he first developed food allergies around the age of 35—I started to lose count after the 15th one. They have now also taken on an idiopathic nature to them, which means “no known cause”—a head-scratcher—although we are suspecting exercise-induced ones with the most recent 4 or 5. Big bummer for an active man and for a wife and children who don’t want to live in fear, nor lose their best friend and Daddy to food or exercise.
Anaphylaxis is a serious, life-threatening systemic allergic reaction that is rapid in onset and potentially fatal. It can cause a number of symptoms including narrowing of the airways, dangerously low blood pressure, unconsciousness, and death. Interestingly enough, the word is Greek in origin and means “against protection”.
In Frank’s case, his symptoms set in fast and furious and take on an agenda all their own within 15 to 30 minutes of coming into contact with one of his allergens. Whether it is food-based, idiopathic or exercise-induced, the reactions are violent and terrifying—like watching someone who has been poisoned and is in the throes of a stroke and a heart attack all at the same time.
His first signs of a reaction are an increase in body temperature, pounding anxiety, and the turning of a deep red—almost purple—from his torso up. His eyes swell and the sclera turns blood red. His face becomes practically unrecognizable. Then comes the vomiting, and profuse at that—his body’s way of trying to purge the offending allergen. His blood pressure drops, causing his heart to go into tachycardia—a dangerously accelerated heart rate that far exceeds the norm.
Once the epinephrine (which contains a preset dose of adrenaline) kicks in, he begins to shake violently, putting his heart into double overload with the dramatic changes in capillary dilation and blood volume. While his capillaries increase in diameter, his blood volume does not, and thus the rapid pulse—the heart’s way of trying to compensate for the decreased blood volume reaching it. As his heart rate shoots up, but his blood pressure drops…bad combination. The epinephrine forces his blood vessels to constrict and prevent a further dropping of his blood pressure. The severity of Frank’s reactions also requires intravenous Benadryl…not such an easy task when his body is violently shaking. It is always a waiting game hoping and praying that the meds kick in, do their job, and save his life.
During one of his reactions—on the side of the road as we were pushing our then year-and-a-half old twins in individual strollers to an early evening Christmas parade in San Diego—the medics were not able to detect a heart rate as his pulse was so weak. I for sure thought I was losing him, as I feel during each reaction. What did he react to? Irish breakfast tea. When I contacted the company the following day, they informed that they had just started to carry a mango tea a month before.
Any one of these events would have been more than enough, never ever needed to be experienced again. No lesson to be learned in any one of them, other than how to try and cope with an overwhelmingly traumatic, stressful situation that repeats itself over and over. We have had plenty of opportunities to exercise our survival skills, fortitude, and determination to push through, move on, and get to the other side of fear and uncertainty.
Our family shares a gusto for life, a big love of adventure and of having FUN, of living in the here and now, in large part because we know firsthand the painful reality of life being pulled out from under your feet in the blink of an eye….”almost”, on repeat.
“Almost”, “close enough” to drop you to your knees, and amidst the fear-driven tears and full body trembling, thank your Lucky Stars, Fairy Godparents and the Almighty God above that you will see another day as a family and that you won’t have to navigate the pain and larger-than-life emotions of consoling your children’s hearts from the premature loss of their father.
I have always tried my best to protect Mairead and Liam from seeing their father in this alarming state, but there have been several times in which I have not been able to spare them the horror. I pray that these memories, in time, fade enough to where their spirits and sense of safety will not be impacted in any adverse way. Mine too.
Frank’s allergic reactions turned into full-blown anaphylaxis several months before our 2001 wedding. Prior to that, he would experience unidentifiable malaise after eating certain foods, but the determination of the source(s) occurred only over the trying evolution and increased severity of the reactions. He soon made the connection between mangoes and these life-threatening events. We began to avoid them, not fully understanding initially the extreme level of necessary caution.
Allergy testing and lots of “field research” of our own suggested that as a result of Frank’s long-term exposure to and inhalation of poison oak on wildland fires as a career firefighter, and its proven cross-reactivity to mango, pistachio and cashew—all of Frank’s now known allergens—that somehow his immune system went into exposure overload and said “enough”, “no more”, and if you do, I will reject it and expel it from your body in the most violent and virulent of ways. The recent development in the last few years of the idiopathic and exercise-induced reactions are an added challenge, to say the least.
We wore our wedding rings one month before our wedding day. They were so beautiful, sparkly and symbolic of our commitment to each other that we didn’t want them just sitting in a box. We didn’t know if we would together have the chance to wear them again. Several people questioned the prematurity of their placement on our fingers and didn’t get it. We did, and that’s all that mattered.
Living and dining in Mexico, it is not the cultural norm for people to say ‘no’ to requests, and/or perhaps they don’t want to lose the potential business. When we review a menu at a restaurant, we pose the question in such a way that it comes across that we are hoping or looking for or wanting a dish with mango and/or nuts. We have found out the hard way—that this is the best way to get an accurate, honest, and safe answer.
If we open with, “My husband has a life-threatening allergy to mango and nuts, do you have any in the facilities/on the menu/in the kitchen/behind the bar?”, we are often responded with an “Oh, no, no, none at all”, only to come to find out either by seeing it brought out to another table or by Frank going into anaphylaxis, that in fact, they do have it. So instead, we ask, “Do you have any dishes with mango or nuts?” with a hopeful tone and demeanor that we are anticipating that they will respond with a “yes”…this has allowed us to dodge a bullet many times.
Frank is so extremely allergic that he has reacted to drinking a cup of Irish Breakfast tea, sipping out of a family water bottle, consuming salsa, eating a piece of toast—all items that in some shape or form had contact with mango or nuts—even the most minute amount. We don’t keep nut or mango products in the home. If the kids or I consume them ourselves when out and about without Frank, we fully “sanitize” ourselves upon our return home–brush our teeth, wash our hands, mouth, and face, and even change our clothes. We have learned the hard way that this is the level of care we need to take to keep him safe. And we do.
We have been down this “Is Daddy going to die?” road one too many times, and in my private pain, I have wondered if I was going to lose my husband, my partner, the father of my children sooner than I ever thought. I have stood trembling and praying out loud over Frank’s body, running back and forth from the bathroom where he lay fighting for his life to our children’s bedroom where they seek refuge from the storm of symptoms that hits their father like a fierce hurricane…and with my best efforts to keep it all together, assure them that no matter what happens, that we will be okay.
I check and triple check food labels, call companies, email quality control departments, avoid cross-contamination at all costs, ask the hostess of the party to save all original packaging of prepared foods (which many times means my digging through the trash to retrieve them), pre-feed my family prior to social engagements, don’t go to social gatherings based on food/allergy risks alone, call ahead to restaurants, eat primarily at home, juggle different recipes and different pans, sterilize in between courses, ask the hard, uncomfortable, ‘odd’ questions when eating outside of the home….”Were you eating any mango or nut products when you prepared this food?” “Do you have any mangoes or nuts on the premises?” “Do you wash your hands and sterilize your cutting boards in between dishes if you do?” Our policy now is that if there are mangoes or nuts on the premises, we do not eat—period.
If a computer screen could transmit textures, it would pick up the teardrops falling from my eyes as I write all this, for in the writing, I am reliving.
And this story wouldn’t be complete if I didn’t share the psychological and physiological effects it has had on me. My constitution is very sensitive to stimulus, to the witnessing of other’s pain–human, environmental and animal suffering alike. I have been a softie since I was a wee one—intuitive, perceptive, and yes…at times, emotion-full…all underneath the kickboxing, kick-ass exterior. Give me my pair of pink gloves and you would want me on your team! I really bought into the “no pain, no gain” motto during my undergraduate years of rowing crew and I love the thrill of a physical and mental challenge, but anaphylaxis stuck on repeat is way beyond my desire for a good test of my character. It has taken its toll on me. PTSD is a tough one to work through, but I do so daily out of honor and respect for myself and my family—I am always seeking a better today, a brighter tomorrow, and am diligently working through and beyond the fear. It is no small walk in the park, but my constitution is as equally strong as it is sensitive.
I am not an MD, but I do believe that I have had enough experience to offer a few suggestions. If you or a loved one suspects or are dealing with a known food (or idiopathic) allergy, you might want to consider the following:
1. Keep a Food Journal
Pay close attention to any symptoms after consuming any suspicious foods. If you are able to narrow it down to a few possibilities, isolate them and eat them one at a time to better identify the allergen(s). If your reactions are severe, do not do this without medical guidance and supervision. Some allergists will do an in-office food challenge where they can monitor your response to suspected foods and administer medications immediately if need be.
2. Make an Appointment with an Allergist ASAP
Request skin testing and blood work. Even if neither shows a positive response to your suspected allergens, the proof is in the pudding and go with your experience and intuition, not the test. Seek a second opinion if need be and be retested.
3. Always Carry Benadryl
For mild allergic reactions, sometimes Benadryl is enough to reverse/stop the reaction. For serious reactions, it is likely needed in conjunction with epinephrine, and always emergency medical care. Don’t delay in calling 911 or whatever emergency medical service is available in your country of residence.
4. Request an EpiPen Prescription from Your Doctor and EpiPen Training
Keep up with your knowledge of the use and administration of epinephrine. In the throes of a reaction is not when you want to be reading the small-font instructions. Here in Mexico, preloaded EpiPens are not yet available and so one must buy the medication and the syringes separately…not so convenient nor practical, but in a medical emergency, better than nothing.
5. Avoid Suspected or Known Allergens
Pay careful attention of the potential of cross-contamination. Speak up for yourself in public settings where you might consume food—it is worth it. This is your or your loved one’s life.
6. Let Friends and Family Know of Your Allergy(s)
They need to be aware of your food considerations/restrictions and know how to administer medications if necessary.
7. Always Carry Your Medications on You
If the severity of your allergy is such that you require an EpiPen, never ever leave home without it/them (in case you need more than one or if the administration of one were to fail for some reason). If you have a child with severe allergies, always make sure their caretakers, school administration, and teachers have an emergency medical kit that has been prepared specifically for your child’s needs, with clear, detailed, written instructions. Do an in-servicing with the staff at the beginning of each school year and perhaps a refresher at the mid-way point to go over the steps to be taken in the event of an allergic reaction. Leave a medical kit in the main office and one in your child’s classroom. When your child is old enough, train him/her how to self-administer any needed medications and make sure they always take them with them in an appropriate carrying case—always.
Keep your medications in a safe, weather-proof carrying case.
8. Eat as Clean and as Pure as Possible
Purchase organics and avoid GMO’s as much as possible, educate yourself, read food labels, call the quality control department of the company if in doubt. If it is difficult to pronounce, it is likely chemically-based and therefore toxic to your body and therefore prone to weaken your immune system.
Spend time outdoors, engage in activities that bring you joy.
10. Honor and Listen to Yourself
Live well, be grateful for the here and now.
When I first sat down to my keyboard, I didn’t know if I could write about this. I didn’t know if I could find the words to fill even one sentence. I see now that I am finding my own way of working through the “agony of bearing an untold story inside me”. It has taken me years to do so.
This is my way of transforming the pain into forward motion, of flipping my fears into empowerment of self and hopefully others, of acknowledging my and my family’s strength, perseverance, and bright-eyed vision that there is always a rainbow waiting to emerge from the darkness; of being grateful for this here, for this now, for truly living and being present in the moment.
I am not grateful for anaphylaxis, but I am grateful for our family’s willingness and ability to see through and beyond it; to enjoy our days to the fullest, to suck the marrow out of life, to live in joy and gratitude.
There is no other way.
In Peace & Health to You All,
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