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FAST's Candid Stories from Adults with Allergies
There's a
completely different set of rules for adults than there is for
children. Adults aren't supposed to be silly, or "awkward". And I know
well how people think they understand, but they just don't. I've been
on both sides of that issue. When I was growing up, I had (still have)
a great aunt who would come to visit us about once or twice a year. I
remember all the frustration my mom would have trying to cook for this
woman. Even though my father is allergic to corn, my parents felt that
my great aunt's allergies had to be all in her head, and couldn't
possibly be real. They, and everyone else in my extended family, blamed
her "sensitivities" on the fact that she was elderly and had never
married. Somehow they figured that this made her a little over picky
and difficult about foods for want of attention or something I suppose.
Although everyone loved her, it was very stressful to have her around
because she was so concerned about allergens, headaches, and meals. Her
visits were looked forward to with a certain amount of dread. And
people struggled to make meals that were egg, wheat, oat, corn, milk and
nut free.
When I was in my late teens and early 20s I began to react to all
fruits with a pit or core in them, and began to get violently ill every
May until one year when I was in college and was so sick and short of
breath that I couldn't walk the half block from the library to my
house. I ended up in the doctor's office and had steroid shots so that
I could finish out the final exams. I scheduled an allergy test
immediately after exams. I will never forget the doctor's reaction to
my skin tests. "WHOA!!! I've never seen anyone react that badly to ALL
of these things! You're allergic to the world!!" I will also never,
never forget walking out of that office completely devastated as I was
handed a list of things I couldn't do anymore, things I couldn't eat,
places I couldn't go. I had walked in a relatively healthy young woman
with a bright future ahead of me, and walked out completely broken and
terrified. All I could think was that I was going to be exactly like my
great aunt and no one could understand how frustrated and alone and
afraid I felt. Suddenly danger seemed to be lurking everywhere and I
didn't know how to combat it. I arrived at my Mom's office (which was
close to the allergist) in tears, unable to see, much less drive the
car. She drove me to the pharmacy where, in a complete daze, I was
introduced to epi-pens, inhalers, nasal inhalers, antihistamines . . . .
I knew life was never going to be the same again.
As a child, I was sick frequently, always had a cold or an upset stomach
and was accused of being a nervous child, and of faking my symptoms. I
know my parents were frustrated with me, and never seemed to understand
how sick I really felt. Being diagnosed with allergies helped in one
way, because suddenly I could tell myself that I hadn't been crazy, or
attention seeking or a hypochondriac as I was growing up, I really HAD
been sick. And for my own peace of mind, that was very comforting to
know. Unfortunately, that didn't help explain my sickness to family
members or friends. None of whom seem to understand just how tired, run
down, and ill an allergic person can feel when they encounter
allergens.
Its frustrating enough to know that YOU CAN'T (and everyone else can) do
certain things, eat certain foods, and be carefree about life, but when
you have all that social pressure from other people to "knock it off and
enjoy yourself" it becomes even more devestating.
I live in Ireland now, and while I've enjoyed my time here, its been
very frustrating to try to explain to Irish people that allergies are
for real, and that I'm not just making them up--I really do need to be
careful about what I eat, and to listen to my body when I start to have
problems breathing in smoky pubs, or feel very tired on a summer's day
drive. Unfortunately, in Ireland, you absolutely CAN'T get soup without
carrots, or rye bread. Since I don't eat beef here (Mad Cow Disease) my
diet consists mainly of chicken and ham. I have been told that my
allergies make me difficult to be around and frustrating to deal with.
Those things hurt a lot, because my childhood experiences with my great
aunt remind me of just how difficult it is for the rest of the world to
deal with an allergic person, but my personal experiences show me just
how frustrating it is to know you need to be so careful about what
you're exposed to and how severe the consequences can be.
The upside to all of this, is that at age 79, my great aunt finally got
married for the first time to a wonderful man who is diabetic, and
himself understands the need to monitor one's intake of food. I rang
them the other night and we had a good laugh about attempting to find a
food that we could all eat. We figured maybe we could sit around a
table together and dine on spoonfulls of nutrasweet! (Tanya)
My brother told one of my teachers at school why I wasn't there that
day. "She has emotional problems," he said. I missed approximately 30 or more days each
semester, and we were only allowed fifteen absences. So many times, teachers
were curious as to why I wasn't at school.
Worst of all, my parents knew I enjoyed school, so they thought that I was
not going to school because of emotional problems (now you know where my
brother got that from). They were convinced that I needed to go through
counseling. I spent days home from school crying, feeling sick
and feeling that no one believed me. I was
constantly diagnosed by the doctor with "the flu" or a "cold,"
bronchitis and ear infections. I was also tested for multiple diseases
(and misdiagnosed many times), all negative.
We finally went to the allergist, thinking I had inhalant allergies, and
that maybe my pets were making me sick. The
allergist, however, had a different idea. "This sounds much more like
food allergies." He still went ahead with the test for inhalent
allergies...all negative (except an insignificant one, to something like mold). The food allergy test took two weeks
to get back. During that time, my parents told me, "this is our last
hope." In other words...if it didn't come back positive, then it really was
in my head.
Imagine how much I thanked God when that test came back not only
positive, but that the allergist diagnosed me as having severe food
allergies! No longer was it "in my head."
It's so painful to get this sort of treatment from your family. I have
really forgiven my parents. They have looked back
in the past and can now admit that they saw signs as early as when I was a newborn
that the doctors ignored. (Melissa)
As an infant, I had frequent colds, earaches and sore throats. By age 3, I
was having monthly bouts with hives. I am now 50. About 4 years ago, I
started having angioedema episodes. Not knowing what they were, I did
nothing until I ended up in the Emergency Room one night almost dead
because anaphylactic shock developed! About a month after that I saw an
allergist for the first time. Allergy testing revealed that I was allergic
to almost everything. The allergist recommended that I move to the desert
which I have done. I have to be very careful of what I eat. I can truly
say that for the first time in my life, I feel good - something that I've
never experienced before. Such a blessing!!
The allergist also determined that I was allergic to Benadryl - something
that I'd been taking since age 3!! So what was supposed to be helping was
actually making things worse.
I'd developed arthritis symptoms and was being treated with NSAIDS.
Testing revealed that I am allergic to them too. The arthritis symptoms
are totally gone with treatment for the allergies. It is hard to remember
that I was having difficulty walking because of the pain. The hardest
thing that I deal with is the allergy to red and yellow food dyes since
they are in so many foods - even corn flakes!!
When I moved here, I went to see an allergist who spent half of the office
visit on the phone making personal plans and the other half of the visit
making negative comments about my previous allergist (who he doesn't know).
I walked out and have been letting my general practitioner handle the
allergies. Probably not a good thing to do but as long as I am not having
a problem, I probably will continue.
I am glad that medicine has progressed to the point where today's children
can be diagnosed and treated early instead of being sick for most of their
life like I was.
I suspect that my sister (3 years younger than me) has allergies too. I've
recommended that she get tested but so far she is refusing to do so. She
is experiencing frequent migraine headaches. I used to have them too but I
now know that this was a symptom of my allergies because I've not had one
since treatment for the allergies started.
Life is good. :)
(Name withheld)
I was born three months premature in 1964. From birth I experienced respiratory difficulties, including lifelong asthma. While my asthma was a continuing problem it wasn't until I was six years old that they began doing allergy testing and found out I was allergic to everything on their allergen testing list, though at that time I was never started on allergy shots and only continued on oral medications for my asthma and/or allergic reactions with multiple trips to the emergency room.
When I was 15 years old we had a crab feast. I had my first possible allergic reaction in which I had increased asthma symptoms and went to ER. They gave me a treatment and said I was probably allergic to crab. Within that same year I also had the same reaction from eating avocado, and was told not to eat it again. I had even attempted to cut up avocado for my family's dinner, but found my hands and face swelled up from mere contact. After avoiding crab and avocado for many years and moving to a different area, my asthma symptoms became very stable for approximately 20 years.
When my daughter was born in 1988 I developed my first anaphylactic reaction, while in recovery, to a prescription drug. Then again in 1990 I had my next anaphylactic reaction to a drug via IV during a Cat Scan. Both of these developed and were treated in a hospital under a controlled environment. I was then told to avoid crab and those two drugs.
For many, many years, avoiding these didn't prove to be too much of a problem, with few exceptions.
I took a prescription allergy drug immediately, and only experienced hives.
Another time I ate at a restaurant and ordered a salad, again requesting that no avocado be included due to my allergy. This time I immediately noticed avocado and stressed to the waitress that I couldn't eat it. She took my plate back to the cook and soon returned with the same salad with the avocado scraped off. I had to readdress her and explain my predicament, while getting strange looks from other diners, as well as our waitress. This was truly the first time I had to experience the attitudes others have about "allergic reactions." So many times, others either choose to or decide to be ignorant to our distress.
Despite my allergies and reactions, I never received the advice that I should carry an epinephrine injector or other allergy medications in the case of emergencies.
In February 2004, I came face to face with my own mortality. My sister and I decided to dine out. We went to a Japanese restaurant and I conferred with our waitress and the cook to discover the ingredients in their fried wontons. I asked if the wontons contained crab or any type of crab products, and stressed that I had allergy to them both. They both assured me that the food did not contain crab, and assured me that eating the dish would be safe. I proceeded to cut open and look at the cream cheese wontons. I ate one and a half wontons, but when eating the second wonton I noticed a red speck in the cream cheese.
I began to feel my throat itching. "I might be having an allergic reaction to something," I told my sister.
When hailed, our waitress checked with another cook and stated, "Oh, you're okay. It was just imitation crab."
"Imitation crab has real crab in it," I told her.
"Well, you shouldn't have eaten it!"
We asked where the nearest pharmacy was so that I could take some over-the-counter medication. After I took some, my sister told my face was turning red. I felt my throat getting tight. She drove me to the nearest emergency room. By the time we arrived, I could scarcely breathe, was nauseated, and began having diarrhea. I was immediately treated with multiple medications for approx six to eight hours, then sent home (on medications) because they felt I was stable. I received my very first epinephrine injector, too.
Less than 24 hours later, I experienced firsthand how the recurrence of reactions can be delayed and/or reappear. While home alone, I became extremely short of breath and began getting hives all over. I called an emergency number and gave myself my first epinephrine injection. By the time the paramedics arrived, I was close to needing to be intubated. They have me another injection of epinephrine, and raced me to the emergency room, where I was then treated and emergency intubated with what is called a very traumatic intubation, because my throat had swollen shut; they almost had to do a tracheotomy. I stayed in the intensive care unit for a week, where I had to be intubated three separate times before I finally made it home.
Within a month and a half I returned to work. One day, a few days later, while on my way to work there was a large grass fire along the highway, which immediately put me into respiratory distress. I was then hospitalized for an additional two weeks, and during that time I was intubated two more times.
It was during this time and even up to this date that I found out how much this has literally changed not only my life but also the lives of my family members. Prior to this episode the only diagnosis I had was asthma, and the only known allergies were to a few drugs, crab, and avocado.
I now discovered that due to the reaction and treatments, I have permanent damage to my vocal cords and stomach, which have led to a condition called "Vocal Cord Dysfunction" in which my vocal cords continuously vibrate and close from any irritation, as simple as talking too much, coughing, postnasal drip, odors, allergies, colds, GERD & vomiting. Since this has all happened I have suffered multiple periods in which I have stopped breathing because my vocal cords have completely closed off. I also now have gastric esophageal reflux disease and gastroparesis (a condition I had never heard of before). It leads to daily vomiting episodes, decreased weight, decreased appetite, and the need to stay on a low fiber diet with many more food I can no longer eat. I am currently still in the process of finding ways to cope and learn of ways to live with this condition.
I was referred to a specialist and given multiple tests to discover that I am now allergic to so much more. I am now very allergic to: other drugs, latex, all fish, seafood (not just shellfish), nuts, bananas, avocados, cantaloupes, peas, watermelon, wheat, corn, string beans, barley, soy, egg, carrot, tomatoes, and onions.
I never realized or was educated on the severity of allergies, nor have I ever seen anyone affected by allergies like this. This has definitely made me a more effective nurse to my patients. I also try to spread the word and educate as many people as possible about the reality of allergic reactions, especially those related to foods. Too many people are uneducated about this condition.
My hope is that we are able to get the word out to all those we can possibly educate with the information needed on the importance of food allergies. I can give testimony to the fact that though I am still suffering the consequences of a small bite of food, I am alive here today to acknowledge that fact, while others have suffered a far worse fate. (Pseudonym: "Sawn logs")
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