Prologue. Immunologist ordered more allergy testing, because - not to throw shade at my last allergist, but ok kinda - they have to be done very precisely to yield valuable results and, she just prefers to do her own. Since I was perplexingly negative to a couple of things that seem very much to cause symptoms for me, I'm curious anyways. I am sick of people rolling their eyes that the imaginary cat and tree allergy. I have enough weird health issues that kind of get dismissed as "did you know stress can..." Yeah and did you know that multiple chronic conditions cause neurochemical changes that makes stress a direct symptom instead of a cause. But yeah, I might be suffering from hysteria so fetch me my um... you know.
Ahem. This test is way more extensive and will involve food. So this week is the week. In order to test everything, it will take two days. AND - here's the real kicker - I have to be off antihistamines for 5 days before testing. Meaning Saturday through Friday antihistamines - both the Allegra I take for hives and allergy symptoms and the pepcid I take for reflux - are off the table.
Now remember, while I do get regular allergy symptoms to a degree, mostly I don't get the sniffles. I get swelling and burning and crazy itchy rashy skin and maybe a little baptism of post nasal drip to add to my globus so I can't really breathe or swallow clearly (but I don't wheeze, it's weird). Which is to say, I'm not walking around with a mild head cold this week. I'm walking around turning burning red everytime somebody dares to touch me or look at me too hard.
As a consolation prize, my immunologist offered me prednisone. I hate prednisone, but for some magic reason you can take it and still do allergy testing.
I had a horrible experience with prednisone a few years ago. But this is a much lower dose (1/3 of my previous dose) and being too reactive could make the test impossible, so... worth a shot? (maybe just a pill)
And now... a log of the 5 days and 2 more of Antihistamine Hell with a side of 'roids.
First day: I forget to take my Allegra sometimes, so this is familiar territory. I am just generally already reactive. Not the worst. A bit like a day where I'm stressed and poorly slept, and Allan's wanted to spend a bunch of time by the pond... but with more random bright red spots that come and go. I'm in the fascinated phase. My armpits, of all things, are itchy AF. And I have a little angry dot on my ribcage. My hands and feet have been especially fussy. Socks, shoes are underwear are irritating. And in the evening my face got super flushed for a good forty five minutes. My eyes and mouth are miserably dry, which is unexpected. Antihistamines dry them out, so I thought going off would help. Andrew's off mountain biking. Allan and I amuse ourselves. Pretty normal day except sometimes I take photos of random parts of my body for the inevitable...
"Allergy Testing Countdown" album. (view at your own peril and curiosity!)
Second day: Wake up feeling pretty ok, but it adds up quickly after I move around a bit. Decide maybe to take the prednisone, but it has to be taken after a meal, so decide... later. I go back to bed. We get into our soccer routine...
Allan runs around the field deftly ignoring the ball and playing with her hair. Sometimes she runs to the goal and hides there muttering about bunnies. Some other slightly more on-the-ball (har har) kids managed to kick the ball into a goal (though usually their own) and block their teammates from scoring. Allan ultimately is less of a net drag on the kids' team than many others.
We drive home and have lunch and...
... I forgot the prednisone. I'm breaking out in various little specks in various places. Eventually my throat starts feeling pretty awful.
We reach the period of Allan's kindle time where I actually get to hang out with my husband and I'd like to be able to touch him, so I compromise on half of one pill. Not sure how much that helped, especially followed almost immediately by my gaviscon (heartburn medication that can reduce absorption of other meds taken at the same time).
Touching occured with only some strange burn marks, but I always get those. Later, made the mistake of crossing my legs and letting my ankles sit under my body. Found some bizarre sock patterns etch in angry red on my ankles shortly after. But it cleared up before bed anyways.
Third day: slept kind of restlessly. I always wake up feeling pretty good because if I stay in the allergen reduced zone and don't move, that seems to help. My future life: living inert in a bubble and typing all messages to the outside world with my brain. Today was no exception but the itching resumed fairly quickly upon moving. I remember from last go around off the h1s, I basically just had to stop wearing shoes except very very loosely strapped sandals.
I take the prednisone after some food around 7.
9 a.m. everything is still really really burning sensitive, but technically better I think. Then again, immediately contradict myself as a crazy line of hives breaks out along my right wrist for reasons I can't fathom. They fade in about an hour.
By noon time I feel like I'm simultaneously totally dissociated and about to have a panic attack. Without many alternatives, I carry on with child rearing with a lot of muscle memory. Not loving the prednisone even at the reduced amount. Weirdly my heart rate isn't elevated at all, but I can feel it especially loudly through my chest. My head feels off.
In the height of 'roid anxiety, I write my doctor saying I don't know if I can handle the 'roids, any tips? She's not in the office until Tuesday so I don't really expect to hear back and wish I'd waited to write in the first place. It calms down after a few more hours and I realize that I can reduce both the hives and the prednisone-craziness if I just hold mostly still and don't move too much. So the rest of the day is mega-mellow. Allan and I watch Nat Geo's Unlikely Animal Friends about unexpected animal BFFs. It's doing it for me. I still am getting hives. But I can see the argument that it's been an improvement in the downward cycle into ITCHY AF.
Fourth day: Wake up in the middle of the night with acid in my throat. I stopped taking my famotodine (pepcid) yesterday because those also interfere with allergy tests. So now I don't know if it's the prednisone or the acid rebound, but my whole gut is in revolt.
Get some more gaviscon, which helps, but then my stomach goes into protest mode. Sleep surprisingly better than expected all considered. Even snuggle with my husband without breaking into flames. Groggy wake up. Get up. Back to bed for a while. Feel itchy as itchy can be. Prednisone helps a little. Take a second dose after manufacturing enough food to constitute a meal.
Bathe myself in various sanitizing and cleaning chemicals while walking to the Neurologist's office (perfect, I expect I'll start getting my contact dermatits reactions on the day of allergy testing!).
This is a follow up to that fun time I discovered I might have B6 toxicity! It's also a follow up where I'm fairly determined to ask if something else might be going on, since my particular "IBS" is actually more like Irritible Body Syndrome and it's been amping up recently.
We talk. He decides I should see a rheumatologist before he treats the neuropathy. I agree, even though I've previously been blown off by two. Negative ANA and nobody wants to see ya!
According to the patient handout I read later on mychart, I'm being referred for "sero-negative arthritis" though in the doctor's notes (also now posted on mychart so you can immediately realize the doctor wasn't really paying attention most of the time after all) the "treatment plan" is sorting out small fiber neuropathy from fibromyalgia or pyroxidine toxicity. I don't think arthritis or fibromyalgia were ever actually uttered in the meeting, but sure? I was thinking seronegative sjogren's but we'll start with whatever we got.
Hear from the immunologist's office on the way home. They recommend that I take my prednisone with a full meal. So that was helpful. I'm reassured that even if I have hives, they can test around them. I'm skeptical, but continue on with the plan.
Come home and the family is outdoors (rolling in grass pollen! Wheeeee!).
Hit a midday panic attack feeling again after lunch. Hard to describe but it's miserable, and the reflux is really getting into it now. Get heart rate back to chill and then watch UnlikelyAnimal Friends with Allan. Doe and kitty cat! Human and cheetah! So many buddies!! AWWWWW.
And suddenly it's dinner time. I eat very little because nothing is agreeing with the prednisone but manage some eggs and a mouthful of zaffy taffy (where/s the joke? the joke is this is sugar-free taffy. HA)
Allan is adorable for the next five minutes and then a terror beast who is screaming at daddy because the cat he drew her has "evil eyes" or something too hard for her to color, and she saw me filling up her drink and I'm only supposed to fill her drink when she starts making this specific 'mmmmm mmmmm mmmmm" noise. Wait, scratch that. "mmmmmm mmmmmm" is when she wants to use the bathroom. When she wants a drink (which she must have before going to the bathroom) then it's more of a slurp slurp sound. How am I even allowed to parent without knowing that difference??
"The family" proceeds to start again trying to make a card for Uncle Zach ten minutes before tooth brushing time, ensuring we will be skipping parts of bedtime AND that the child will be having at least three more tantrums before making the "mmmmmm mmmmm mmmmm"/"slurp slurp" noise and taking several hours to drink all of her drink before... Andrew starts writing a message. Allan insists she has to wait for him to finish it. He may never actually do this. It's a heartfelt tome going on here. Allan is just watching him write mesmerized by the squiggly lines.
So far, it's about bedtime and Allan has not drawn on anything yet. The letter is currently written and sealed in the envelope and she is yelling that she wants it back out so she can put it in herself. Daddy looks weary and annoyed for a minute.
Mommy is no longer prednisoned up and now more itchy so she kind of shrugs and says "que sera sera" while Allan screams and sobs that the creature she drew on the envelope has a terrible looking eye. Now she's screaming "I'm not a beautiful girl. I"m not cute. I'm not pretty!!!" I'm a little curious what the connection is between messing up a drawing and not being beautiful. Life happens fast sometimes.
Daddy asks if she'd like to move to journaling and I remind the room that I've been nagging since 7 about how she needs to brush her teeth and she's been saying she needs to drink her drink and use the bathroom first... but not yet!!
Nobody really listens to me because Allan forgot to add feet to her envelope creation. Reflux took a nice break while I was eating, but it's coming back again. Everything feels better when I eat. I feel like I should just be constantly eating. Which was kind of the point of the crazy gum habit untill it started making my tongue burn and get white angry stuff all over it.
Child eventually goes to bed. We sit on the couch. I feel chest pains that I know are from reflux, but it remains disconcerting. Ask my husband what tomorrow looks like for him. Not sure he fully heard because - without looking up from his phone - he gently squeezes my foot. I smile, so the prednisone must be mostly chilled. I drink some bicarbonate in the hope that it will chill out the acid rebound and instead just start burping a ton and feeling less comfortable. Bedtime should be fun!
...bedtime: I am surprisingly comfortable and sleepy. The room doesn't feel that warm, but it's apparently 78 degrees in there, so I begrudingly turn on the AC on. I don't really know how ot describe my unease with the AC but it feels like everytime it's on, my skin, nose and eyes start stinging. So I prefer to avoid it until the weather is legitimately warm. Unfortunately I also tend to avoid opening windows in high pollen seasons. So I turn on the AC and pass out...
... only to be awoken by adorable little demon spawn child who needed to come in at 10:30 to tell me that she saw lights behind the trees and they were stars. She then proceeds to run around the house yelling for daddy's attention until he comes and negotiates a return to her room. She stays there a few minutes and then comes back in to ask me to help her tie her robe. I am, of course, never going to sleep again. The AC is making my sinuses and eyes burn. I'm itchy. Various parts of my body - after my telling the neuro this was happening less - are twitching like crazy. Just when I start to settle down, Andrew comes up for bed. We both toss and turn in our various corners for a while...
Fifth day: Unlike previous days, this day has no sleepy morning respite. I wake up early with a variety of little welts and hives already forming. Daren't speculate. Some go down once I've left the room and the itchy-burny is replaced with the fun stabbing sensation of reflux. I don't usually get this unless I'm recently off my meds or I've eaten a heavy trigger like pepper or onions.
It's novel. Usually it's all in my upper airways. The extra stabby feeling is... interesting. I'd take more bicarbonate, but last night I had convinced myself that's why all the twitching, so now i'm not sure.
Surprisingly less reactive rest of the morning despite the bad start to the day, and putting off taking any prednisone. My stomach is all off. That will probably take a few weeks or longer to recover, given usual patterns. But I'm on day five so that feels good.
For some reason - probably walking all around yesterday with loose sandals - my knee is killing me. So the plan of not wandering around too much remains in force. Which is fine because my feet aren't tolerating shoes that well. I have cute little welts where all my seams run and anywhere I've rested my arms/back/elbow. They come and go quickly if I leave them alone. Practicing my mindfulness.
By attrition of will, I do not take my prednisone, much to my gut's relief. Hives come in strange rushes and retreats that seem to be presaged by nothing discernible.
Today Andrew is doing a lunch and learn so lunch will be an hour later than usual. Most of the time, Allan could give a crap but today it's a nonstop whine fest. "Hey, I don't wanna have a snack. I really want to have lunch or I'll never ever have lunch again!!!!"
Kid then amends that she will have lunch with Gramma Pam tomorrow. That's a relief anyways. We are farming the kiddo out to my mom's again, because Allan would really rather just live there anyways and I'll be busy with the allergy testing for the next two days. Allan has been counting down since the day she got back from Pam's last time.
Andrew's now off to go mountain bike racing. It's a little different mealtime-wise around here today. I say a little prayer that he doesn't crash or hurt himself because I don't think I could take all the chemicals at the ER today. Also: that he has fun.
Allan is blessedly gentle on her poor mommy and only needs to be tackled a few times. Tooth brushing leaves a few marks and a ton of sparkle crest all over my sleeve and arm. Apparently I'm not hugely allergic to toothpaste anyways. Allan promises to come out demanding a refill on her drink after daddy's home. I say "kudos, but go straight down to find im and leave me out of it." (I'm told she actually fell asleep without coming to see daddy after all)
Several breakouts flare up after all the bedtime rituals but mellow out on the couch. Andrew's still showering when I go to bed, but we'll see each other plenty this evening with both of us twitching and restless (me cuz, duh, and him cuz racing). I wait on the couch for him to finish showering.
Sixth Day: Other than waking up at 11 p.m. to moan "the air conditioner burns my eyes!!!!!!" when Andrew attempted to turn it on, I slept surprisingly well. Andrew turned the a/c off and sweated through the discomfort: my hero. I did wake up with no hives so that doesn't really refute the a/c suspicion.
Hives are chill. Reflux is insane (I miss you, pepcid). Of course now I get the work I've been waiting for all week. I may make them wait. Turnabout is fair play.
Kid is taking her classes. Occasionally screaming "I can't do this. I never wanna draw again" and then imperiously telling the teacher that she was talking to her mother not the class. But mostly she's bright and sunny and drawing adorableness.
Allan crawls up into my lap as I try to get her to hold still enough to not squirm welts into my body with little child friction burns. She stares into my eye and says "your eye is less red today. I like it that way. You look prettier." Thanks, kid. I was waffling between getting myself some red eyeshadow, but I think I'll save myself the grief.
For reasons totally untold I am having almost no hives this morning. I imagine that will change as soon as I get in the car...
.. Actually more like around luncthime. I take half a prednisone. Not sure it's doing much but it didn't mess me up that much either so...
I've gotten pretty nervous by the time Allan goes spinning off with my mom for magic fun Gramma Pam time (she's been counting down for the visit since her last visit). Allan makes a point of hugging daddy goodbye, but pretty much just waves at me. She's so done with her mommy. And between the nerves and the prednisone (and some stress eating), Have gifted myself some pretty epic globus phlegmy reflux for the drive out.
Turns out I have suggestively strong reactions to: wheat (omg, after all these years I might have to go GLUTEN FREE even though it was never really the gluten), strawberry, lettuce, green pepper, onion, and oats.
On the one hand, hey, at least I already was avoiding strawberry, pepper, and onion because of the heartburn. And I was avoiding the oats and lettuce because they're high nickel.
On the other... I'm also possibly positive for: corn and rice.
So forget Gluten Free, I'm basically nipping at the doors of grain free paleo here...
Except I still have to avoid most nuts and seeds becaues of the nickel content. So... I"m going on a diet of eggs, milk, and various vegetables that aren't peppers or onion.
Vegetarian carnivore diet?
Anyways, allergy testing for food is tricky. Just because you have a reaction doesn't mean that it is a problem (unless the reaction is anaphylaxis, in which case you've earned a degree of certainty).
I get to follow up with an elimination diet in which I remove all the delicious grains (oh and clams and oysters, and some kind of fish called perch from my life, oh well) from my diet for three weeks and then chose one at a time to reintroduce over a period of a week (or more!). Then I eat a TON of what I've chosen for 4 days and see if the symptoms change. Then after that we can discuss oral immunotherapy or I can just continue to avoid eating anything from eggs and cucumbers (at this rate i will have to start eating meat again just so I don't starve).
Conclusion, the test was irritating but survivable and fairly efficient. I got sticked 80 times but it didn't hurt much by the time I left. Traffic was middling but not awful. I got home jabbering on about grains and vegetables while Andrew tried very much not to run away in terror at the jacked up excitement of NOT being jabbed with a needle in a cold room without a shirt.
One more round.
Andrew and I kept it chill this evening and watching Guaradians of the Galaxy 2 after ordering in. My kind of date night.
Bedtime... Driving does me in and I was a little warm tonight after days of being a little cold (at higher ambient temperatues, because life is a mystery). Fell asleep brainstorming wheat free snacks that don't have corn, oats, seed, or rice involved and aren't just a million sticks of celery because I already pretty much eat mostly vegetables, eggs, and cheese... Woke up at 3 a.m. to the twitching tornado next to me. I remember after race days and/or hard rides, Andrew would always celebrate the effort by nonstop nighttime fidgeting and twitches that turned our usual domestic blissbed into a bucking broncobed. This time, I noticed nothing on the night of his race. But last night, I guess DOMS (delayed onset muscle soreness, not actually "Destruction of my sleep" though basically similar things). I get up. Since I'm not sleeping anyways, we snuggle, which is nice, but still quite restless. Eventually I push him off and retreat to a corner of the bed.
Eventually drift off into dreams of my perfect separate bedroom: no blowing A/C, but cooling coils on the wall, big humidifier,heated tile floors, pollen-and-pollution-blocking screens on the window (they exist and I need them), a million air purifiers going and NOBODY ELSE ALLOWED. Except I like snuggling so... I don't know. Only allowed after going through a ritual cleansing and agreeing to take heavy duty muscle relaxants?
Seventh Day: Debate whether to wake up at my usual time. Debate whether to get dressed. DO all of the above. Clean a little. The place is a pigstye because I am not really up for lots of moving around and irritating my skin or stirring up dust. I figure "that'll show everyone how much work I do every day" but (1) probably only I really notice and (2) I keep giving in and giving myself welts running the egregiously messy bits into submission. But it's still less tame than usual. And i have work this morning.
So... um... I eat eggs and cheese for breakfast anyways, but usually I sop up my eggs with some kind of bread. Or eat my cheese with pretzels. I usually have apple but it's borderline for reflux. So... cucumbers and mozarrella and egg I guess. Now what the heck am I eating for munchies? Apparently all the carrots in the household.
My eye is super dry and puffy. This is not uncommon especially with all the driving. But of course I wonder if there's allergy related nonsense going on. My immunologist already encouraged me to go back and get my opthamologist to test me for tear production. Which is silly because I only make tears when I'm bawling to Pixar/Disney movies that jump me emotionally without warning while I'm hanging with my kiddo!
Fill up my amazon cart with gluten free junk that also somehow lacks corn and rice (not an easy task). Delete a lot of it for being expensive and not actually that appealling. No luck on bread, unless I want cassava flat bread. I wonder if it's a good idea to reintroduce some nickel foods to expand the wheat free eating, but decide that could skew the elimination diet aspect by adding confounding factors. So three weeks of cutting more out and then maybe try adding back in the almond and coconut and/or flax.
Head out to the test through shockingly bad traffic. I left early and barely make it in time. But that's nothing compared to the drive home (foreshadowing), so not complaining.
This one makes my little food allergy nonsense look piddly. I knew I was really damned allergic to grass from my last test (and the last year of living in a neighborhood of endless grass variety), but not significantly more than the control prick of pure histamine. She said when it's really severe, they lose shape and just get blobby and that definitely happened to almost all the grass ones.
Also, I'm still allergic to dust mites and weeds. Trees! Not all of them, but cottonwood, trees, willow, oak, and a few other less commonly tested ones that are still plenty common here.
And... vindication: I am indeed allergic to the darned cat.
Andrew's one comment on that entire exigesis (other than a slightly cursory "oh" and "uhuh") was that it was too bad I was allergic to Froggy.
(Subtext, because I'd hate to have to rehome you, dear wife of mine!)
I feel at least less crazy for feeling that reaction everytime i was near her. I mean yeah she's a gross dusty thing, but still the degree to which I started feeling worse after we got her really outpaces a giant stuffed animal.
So... yeah. All that drama and here we all. Kind of what I already knew, except more so. The degree of my grass allergy before you even get into the other stuff that's filling up the bucket makes all the hives and symptoms make some sense. No wonder I've been having such a rough time this last month or two!
I took a giant bag of pills with me: Allegra (h1 blocker), pepcid (h2 blocker/heartburn med), Quercetin (mast cell stabilizing herb), and vitamin c (mast cell stabilizer that also gives me reflux, but worth it at this point). Took them as soon as the last jab was recorded.
Felt pretty ick for a while, but that's largely a function of readjusting to meds, adjusting to not being on prednisone, not having slept well for a while, two days of having been pricked up and down my back while s hivering in a paper crop top, and that friggin' traffic.
On the drive home, my google maps stopped working just when I was supposed to decide which of the three horrible paths home would be least bad. Having no idea how to get out of Bellevue, I drove around in a panic for a while before stopping at an address and looking up the directions on my phone's browser. The traffic was ... not good. Took about three times as long to get home as yesterday. I was spent by the time I got home but not enough to avoid telling Andrew transparently more than he ever cared to know about how to prevent my allergies and the various ways our house could be improved.
He was shockingly blase when I showed him the magical pollen blocking screens you can put in windows that let allergic people OPEN THE WINDOWS without those trade offs becoming physically transparent. I told him it was like to him allergies just made him sneeze a little. He agreed. (Though I'd counter they actually make him snore fairly loudly for roughly 4 months out of the year and toss around a lot more in bed, but this seems to impact my sleep more than his?
And there we are. I'm back on antihistamines and still pretty itchy, but this is a different kind of more ezcemaceous itchy. With badly dry eyes and a still upset stomach. I may eventually recover from all this fun and consider allergy shots. Somebody pass the topical steroids!
But first: more driving and time to retrieve the child!
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