When I started working to build the freedible site, I had a list of food intolerances as long as your arm but little did I know that almost exactly a year later I would find myself in the ER with a severe food allergy reaction. This is my thank you note to the freedible community for giving me the knowledge and the support I needed to get through it safely.
Yesterday was supposed to have been a tight, but straight-forward, day. Drive 2 1/2 hours straight up I-91, meet my Dad and stepmom for lunch and drive home again with my 8 year old son (who has spent the last 5 days on his 1st no-parents, grandparents-time adventure), swooping back into town just in time to pick up the 2 year old from his 3rd day of preschool before sauntering home to the whiff of a new shortribs experiment in the crockpot. Easy-peasy.
That was the plan, anyway.
We were meeting for lunch in Northampton, MA at what has become a favorite family pit-stop almost exactly half-way between my home in NY and my parents' home in VT. A great, independent restaurant serving amazing sandwiches on home-made breads (their sunflower bread is to die for - or it was before I discovered my gluten intolerance anyway), organic fresh veges and salads-galore. The kind of place that "gets", and is happy to accommodate, food restrictions.
The ordering process went smoothly - I shared my onerous list of food intolerances (gluten, dairy, egg, soy) and my growing list of food allergies (nuts, safflower oil, most raw fruits plus raw carrots and celery), and the variations on my list that work, and do not, for my son. The waitress dutifully wrote it all down, immediately ruled out anything cooked on the grill surface where they use a vege oil blend (my soy sensitivity extends to soybean oil, and safflower oil is a common component of vege oil blends, I'm discovering). We settled on a chop-chop salad - absent the cheese, the dressing and the carrots. Just lettuce, corn, avocado, cilantro, black beans, tomatoes - and she suggested that she throw on some sliced turkey since the chicken it was supposed to come with got nixed by that grill-surface problem.
I paused for a moment, calculating in my head: "deli turkey is high histamine [I have a histamine intolerance so I have to watch my overall histamine intake], and my son says his scalp tingles whenever he eats even a few bites of it - but I've never noticed any effects from it. And I have had sort of a nagging sense I need to watch out for cilantro but I can't put my finger on it so I'm sure that's fine." The order was approved and off she went to fetch our drinks.
I smiled wanly when the salad arrived, internally bummed that it was such a stripped-down version of what had sounded like a great salad but trying hard not to show it, and focused instead on enjoying my time with my folks and my reunion with my son. Seeing his bacon burger (without the cheese, bun, tomato or condiments - batting a 1000 here, aren't we?), I asked the waitress if she could slide me a few slices of bacon and happily crumbled them on top.
A few bites later, I was suddenly overwhelmed by a surge of lightheadedness so intense that I moved the salad bowl so I wouldn't land in my lettuce. My stepmom planted an anchoring hand on my arm (she's always the practical one) and we all waited for it to pass. Instead, my scalp began an unpleasant, rippling sensation. Kind of exactly like my son had described to me before when he eats turkey like the kind draped all over my salad. The lightheadedness didn't seem to be subsiding so we politely declined to wrap the rest of the salad up and headed for the door.
My Dad reached across and took my car keys from me. Yes, I needed to get home to my little one but no, I wasn't going barrelling down six-lane I-91 like that with his grandson. A detour was in order - to our other family favorite pit-stop: WEBS (an unbelievable yarn warehouse in the same town). If I couldn't regain my composure surrounded by that much hand-dyed, hand-spun yarn then I really was in trouble.
An hour later, I was sprawled out on the backseat of my step-mom's car in the WEBS parking lot. She was happily knitting an adorable little sweater for the 9 pound teacup pooch she just adopted from my sister. You should know that Hetty has a special super-power of making clear to everyone around her that it is time for all to be clear and calm, under penalty of going through her (she's a child psychologist and trust me, going through her is not a penalty you want to test). Dagger-shooting glares, knitting needles and string are common elements of her super power tool kit and sure enough, within minutes my son was happily settled on Grampa's lap, reading a story in the front seat while I attempted to figure out why I felt like I was falling while fully reclined in the back.
I'd experienced this kind of light-headedness a few times before but I could never put my finger on the trigger and it always passed within an hour, tops. I wondered if I'd gotten cross-exposure to that safflower oil - the most severe of my triggers as it causes sudden asthma attacks - and tried my puffer. No relief. Grampa rifled through my son's suitcase and emerged with child-strength Benadryl. I sucked some of that down too - still no relief. To the contrary, I felt a sharp pain emerging in the top of my chest, and my throat started to feel like the walls were thickening.
We were now a solid hour after my last bite of salad and I was starting to run through all I'd learned from the other members of this site. About how allergic attacks can be quick and immediate but they can also have longer arcs, and resurgent waves after the initial attack passes. And about how that poor girl in California was tragically lost this summer because her symptoms took 20 minutes to emerge - and then hit with a whollop more powerful than 3 epi-pens could manage.
A quick call to my allergist's office later, we were back in our cars, my stepmom driving me to the ER with my Dad following behind in my car, my son safely tucked in his car seat. I noticed that her super-powers did not seem to work on other drivers, and that even her tension level was rising as lights refused to turn green despite my throat continuing to thicken.
An hour or so later, my family sat on folding chairs arranged around my ER guerney like I was an actress on some kind of stage. Happily, I hadn't progressed to anaphylaxis and my lungs were clear - but the lightheadedness was still so pronounced that even lying down I felt convinced I was going to fall to the floor, and the nurse wasn't real keen on the look of my throat when she and a flashlight peered inside.
And so we sat. And my folks played math games with my son. And the IV dripped a who's who of H1- and H2-blockers, saline and steroids into my arm. And then finally, when all 50 mg of Benadryl were safely installed inside, it was like a lightbulb switched on and my head suddenly felt enough more-normal that it was painfully clear how foolish I would have been to try to ignore this one. Realities were checked - and I called my husband (who had by now dropped everything and made it to the preschool in time to scoop up our little one). 10 minutes later, the address for a motel near the hospital chirped through by text message.
By the time I was finally discharged and wearily trudging across the parking lot, it was 8:30 at night. "No", my still-in-super-powers-mode step-mom declared, "you may not drive home and no way am I taking you to a restaurant. We're going to Whole Foods and getting you dinner and then we're driving you to the motel. IF you feel normal in the morning then you may drive home." Trust me, when she's got her cape out the only answer is "yes, ma'am."
But you see, the answer to all of these questions - should I drive home straight off the ER, stay near the Whole Foods to spare my folks the back-and-forth late at night or stay in the motel by the clinic, treat this like a real food allergy attack that could get dangerous even though it wasn't following classic patterns - all these answers were frankly pretty easy. They were easy because even just in our first few months as a live site, here on freedible I've been privy to so many conversations and posts musing, pondering, story-telling, sharing medical information and simply relating experiences that I walked into that hospital totally new to severe food allergy reactions but at the same time knowing an awful lot more than someone in that posture normally would about where they might go.
Waking up in the motel this morning, wearing yesterday's contact lenses and the biggest shirt I could find in my son's suitcase (I slimmed down to my naturally small frame when I discovered my food intolerances a few years ago - but that's another story you can find here), I had a lot of new questions I have to figure out. First and foremost, what on that table cause my reaction. There were a lot of elements I've had reason to suspect in the past and at this point I just don't get to know which of my long list of foods-to-avoid I now need to shift into the "total quarantine" column. Worse, I don't know whether I've just lost a new food altogether. I'll start figuring that out with my allergist next week.
But through all the questions, the sinking dread of a still-harder food regime and even more constrained eating-out lifestyle, I also woke this morning with an odd sense of peace. You see, when I started working to create this thing called freedible, I did it because I just plain felt so much better when I avoided a list of foods long enough to be a logistical nightmare whether in a grocery store or trying to find info on google. I didn't know what they had in common, I'd never heard of this thing called histamine intolerance and other than mild reactions to a handful of fresh fruits I didn't have any food allergies.
In the year that I've worked on it, I've grown into my family's fresh fruit allergy, acquired a nut allergy -- and now apparently stumbled into a food allergy that can cause severe enough reactions to land me in the hospital. Doesn't sound much like progress - and yet I know that I'm going to have the support and the answers I need to figure it out and then figure out how to get through this because of what all of us are building together here on freedible.
So thank you, Custom Eaters and Bloggers alike, for being, and sharing, here on freedible. I can tell you for a concrete fact that you've already gotten at least one newbie through.