my entire life changed at the beginning of 2018… among a handful of things not to be mentioned in this blog post – my health drastically changed…. up until january 2018 – i was the girl eating fried corn every night or baked spaghetti… sleeves of oreos for dessert.. you name it…. i was a foodie and i’d try most anything once… except pickles.
looking back over the years – i can definitely pinpoints specific times in my life where i ‘reacted’ — one specific time i ended up at the ER for full body swelling — and i mean my entire face looked like a swollen lobster, difficulty breathing, the works… for as long as i can remember, i’ve always had a terrible immune system and awful stomach issues… if someone had a cold around me, it seemed like i’d catch the cold but then it would transform into viral meningitis and the flu at the same time (which is a true story by the way) but NOTHING like what happened to me starting in 2018.
i was VERY… very sick.
i ended up losing 42# total — over 30# of that was lost in a matter of weeks after becoming extremely sick.
there were only a few people who really knew the extent to my illness — not even most of my family knew about it.
i went weeks — barely able to stand — severe vertigo 24/7… falling over… i’d cough up blood every day — blood in the toilet — blood coming out of my nose… i’d lose my hearing and have severe ringing in the ears… uncontrollable bowels… migraines upon migraines upon headaches… trouble swallowing and the feeling like there was a lump in my throat… i definitely couldn’t breathe out of my nose at all… and my heart?!?!?! i constantly felt like i was either having a heart attack or i was in afib — with the chest pain i experienced and the arthymia i was having… like i mentioned before — there were a couple of nights i literally thought i was going to lose my life… i was terrified it was the end of my life.
my mouth would burn most of the time — i’d break out in random hives and have very weird skin reactions.
and i just knew something wasn’t right.
no medications were helping, in fact — they were all making my symptoms worst.
it wouldn’t be long before i would find out that i had a handful of food allergies……
and the most difficult ‘food’ allergy is actually my internal yeast allergy — because carbs, sugars and starches all increase the yeast levels in my body – thus making me allergic to… well myself. my doctor actually told me that i was allergic to myself.
we’re not even going to discuss all of my environmental allergens (just know that out of the approximate 50 allergens they tested me for, i was only NOT allergic to four of them) — and we’re not even going to discuss how corn is in literally EVERYTHING — candles/ cleaning supplies/ air fresheners/etc (you name it, it’s got corn in it)….
needless to say the last couple of years have been extremely hard for me…. i’ve gone through a bunch of testing to figure out what the heck is actually going on — my doctors have made note of MCAS and POTS syndrome… at one point this summer i even got admitted to the hospital because i went into anaphylaxis due to a histamine release (mast cell release)… i’ve had abnormal blood work ever since the beginning of 2018 – and honestly it’s all just extremely frustrating.
but you want to know what can be even more frustrating than having your entire life change… not being able to eat out at restaurants anymore — having to eat the same foods EVERY. SINGLE. DAY…. you want to know what’s worst than that?!?!?
having people around you that don’t understand — or minimize what you’re going through…. having people not support you. it’s easy to question something you don’t really ‘see’ — and in fact, this was one of the MAIN reasons i started photographing my skin reactions…. i actually broke down in tears when the doctor told me that my photos were of hives – because they were presenting a little differently on me – i had no idea that half of my skin reactions were actually hives. (side note: if you’re experiencing skin reactions – ALWAYS document them, even if you aren’t sure what it is – i have a ‘health’ album on my phone)
i started documenting what i thought were ‘hives’ on my eyes — come to find out they’re ‘fatty’ deposits… i was diagnosed with familial hypercholesterolemia this year (a genetic disorder in which my cholesterol is dangerously high) and those ‘fatty’ deposits are one of the markers for the disorder… praise the lord i was taking photos of them!!!! BUT – the worst part is, i cannot take the meds i need to be on…. the manufacturers of the medicine won’t release the bulk powder for me to get the medicine compounded.
so what started in an effort to ‘prove’ to those around me that i wasn’t making all of this up… as if the 42# weight loss wasn’t enough evidence — or my inability to exercise anymore ( i was a tri-athlete – avid softball player – and an absolute gym rat) — i began gathering ‘proof’ of what i was experiencing…
it helped…. sadly enough it did.
here are some things i wish those around me knew… or thought about…
>> when asking questions, i wished they’d ask in an effort to learn — vs — coming across as doubting me… for instance… instead of – “well, i’ve never heard of that…” i wish people would say – “wow, so tell me more about that, what do you experience…”
>> when i share that i’m scared to trial a new medicine given to me for MCAS – i wish people would respect that instead of questioning why in a defensive manner… i literally had moments in my life where i felt SO bad that i thought i was having a heart attack and dying — and medicine use to make me feel TERRIBLE… so i’m scared of trying anything new at this point.
>> speaking of — i wish people would respect my desire not to trial new foods all of the time… i directly asked my allergist if we could schedule food trials and she said absolutely not… adult onset allergies are not the same as childhood allergies where kids can sometimes grow out of them.
>> i wish those around me would send helpful information that they’ve found or connect me with others who may be experiencing the same thing…. instead of doubting the things my doctors have told me.
>> i wish people wouldn’t pretend to ‘hate’ the food they’re eating… and i wish people wouldn’t skip meals simply because i can’t eat… this is the worst — how terrible is it to watch someone eating a pizza and pretend to hate it.. NO, i want those i love to be grateful they can still eat all of the amazing food available to them and enjoy every second of it… and to skip meals just to ‘make me feel less alone’ actually makes me feel like complete crap.
>> not offer to cook me food — omgosh.. truly, this is SO sweet — but i really feel AWFUL having to tell people no… it just makes me feel bad — chase is the only person i trust to cook me food.. even well-intention people don’t fully understand the depths of my allergies.
>> stop spraying perfumes – chemicals – smells around me…. these past few months, i have actually been able to tolerate smells more… but that could change at any moment…. people with allergies have what we call an ‘allergy bucket’ — some people’s buckets are bigger than others.. and some people have more allergens that fill the bucket quicker… so when your allergy bucket is ’empty’ you have space to ‘tolerate’ more things… until you can’t that is.. and until the bucket is full — and with each new exposure to an allergen – your body can ‘tolerate’ it until it doesn’t…. so one reaction may be mild while the next can be anaphylactic.. (aka one reaction may be a small addition to the bucket while the next time exposure to the same thing can be a BIG addition to the bucket). i believe that because i’ve done REALLY well getting my food allergens handled, i’m able to tolerate more smells — i still react, but no where near as bad as i used to… and with MCAS – triggers can change and reactions change.
>> continue to ask me to hang out — i used to eat out at restaurants 2-3 times a week…. i loved creating memories over a meal — and it’s hard seeing everyone else go out to dinner or go hang out while i’m sitting at home… i’ve learned there are so many other things you can do with friends than just sitting at a restaurant. (also this is not an open invitation, please remember i’m an introvert LOL)
>> stop commenting on my appearance… yes i know that i’m ‘skinny’ now — and that i’ve lost weight… no need to point out how tiny i am now…. or tell me to go eat a burger… which i probably can’t anyway.
friends, i could go on and on — i know a bunch of you have reached out over the past couple of years and shared your own stories and i’m so grateful for that… i’m so grateful that my own story has helped so many of you as well!!! if y’all have certain questions or things you’d like me to write about or share — just let me know!!! until then, i hope this was helpful and/or at least insightful <3 <3
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[…] As someone who only has a handful of safe foods, my fear of not having access to food is VERY REAL right now… probably the heaviest it’s ever felt in fact… you can read more about my story here…. and here… […]