I think every once in a while life has to kick you in the ass….something has to wake up you up from that comatose life you’ve been living and remind you that you are nowhere near in charge.
I had my ass kicking last Thursday night, and it didn’t quite seem fair at the time as if it ever does, but now that the antihistamines are slowly exiting my body and the Adivan seems further out of reach I think I can draft a picture.
I have never been in charge of my body…..not even for one day. I was born into a body that didn’t work right from birth. I’m the lemon no one wants to buy. I have a fantastic immune system. Bloody, fantastic. In fact, it is so good it tries to kill me. So, in turn I have a constant drug suppressed immune system. I do not run on essential oils, organic vitamins, clothes weaved from the cotton of Ireland sheep, no honey, I run on good old fashioned drugs.
I have always had to dumb down my life in some way or another when talking to people. Even when I go to hospitals I am the mystery girl with the disease no one knows about. I have become so immune to just saying in response to confused faces, “it’s like Lupus” (it’s not) or “I have muscle dystrophy” (which I do not have). I have Dermatomyositis, and it’s actually quite embarrassing for any medical professional in this day and age to not be able to break down 3 simple words. Derma(skin) Myo(muscle) Itis(Inflammation), but like I stated I live this life assuming most know nothing about the body, and it is my sole responsibility to protect myself anyways.
So, why do you care, and why am I writing this? Honestly, I am not sure. I am beginning to feel like myself again after a week of pure terror and writing is my answer to most things. I am beginning to be hungry again, and so with hunger comes ideas for recipes, which requires me to write in this blog. Oddly enough I feel rather inspired given everything that happened. I can start again, start slow, and appreciate the world a little more.
Thursday night I was taken by ambulance to the ER for an severe allergic reaction to shellfish or more specifically shrimp, and mind you this is what the doctors assume as I have yet to actually be tested for allergies. No big deal, right? Yea, my face swelled, I hyperventilated, scared Kyle half to death, had hives on EVERY surface of my body, but I lived. I rode in the ambulance as the paramedic asked me over and over again if I had ever had a reaction like this, and by the time I said “no” for the third time I wanted to scream “IF I HAVE HAD A REACTION LIKE THIS BEFORE WHY WOULD I KEEP EATING SHRIMP”. Idiot. I went on a Benadryl induced high and told him the story of how when I was a child all the adults in my family hated me because I was such a shrimp hoarder. Seriously, my grandpa used to have to make a bag of boiled shrimp just for me because I would sit there and eat all of them in one sitting. My aunt hated me, my uncles hated me, I was the shrimp thief with no shame. So, no fairly adequately looking paramedic I was not aware I was allergic to shrimp.
We arrived at the hospital where the admitting doctor took one look at me, diagnosed me with a shellfish allergy, prescribed my meds and left. No consult on if it could possibly be anything else, just as confident as sure as ever he stated my diagnosis and then he was never seen again. I was given Epinephrine in my arm, Solu-Medrol via IV and fluids. Now, if you know anything about allergies you probably know about Prednisone and Solu-Medrol (Prednisone’s big sister that kicks the ass out of anything breathing) or if you know anything about auto immune disease you should be well educated on both medications, since most likely they are what are keeping you alive. If I were ever to become addicted to drugs I can honestly say it would never be narcotics(I really enjoy being able to poop naturally), I already am addicted to caffeine and after this week I can see how a life on Ativan may not be so bad, but do you know what my real weakness is? What I would scavenge on the streets for outside the local Rite Aid? Solu-Medrol or Prednisone. Lord help me they make me weak in the knees, and by that phrase I mean the exact opposite because I am on cloud nine. NOTHING in or on my body hurts when you pump me full of steroids, I have the energy of a 5 year old. I am alive, again or what I imagine being alive in a fully functioning body feels like.
I went home with scripts for 10 days’ worth of high dose steroids, antihistamines every 6 hours, an epipen and rest. I slept the entire next day with Benadryl dreams and constantly having to pee because of the steroids. I stopped taking my anti-inflammatory as I read on the Internet(not a good idea, mind you) that you can develop sudden allergies to those as well. Now, I don’t really take Prednisone or any steroids any longer, my body has stayed at a respectable healthy level with just an NSAID to keep my inflammation under control, which I was quite proud of accomplishing since I used to have to take about 8 medications a day. Saturday came and went and I was living off protein shakes and rice, not because the fear had set in yet but antihistamines numb your insides, and so I truly just wasn’t hungry. Sunday morning the battle began.
I generally prep our weeks meals on Sunday and though I had no brain power to actually do it this particular weekend the reminder of food struck this sudden fear into my center. I had not eaten any real food since Thursday night’s dinner that ended up trying to kill me. The pan I cooked the shrimp in sat on my stove top shiny and clean, but I felt like I could never use it again. Who was I? It was an allergy Krystal, can you please calm the hell down? But, why did it happen so late after I consumed the food? I suddenly was so restless about the fact that I could eat something and not have a reaction for HOURS later. I had to go to work tomorrow…….I weigh 90lbs I am not the kind of person that can go without eating while working a 12 hour day. And, right there almost instantly I could not face the world. This is when my allergy ….. a little thing…. Something now that it has been a week and I feel like myself again I take lite, but then it was huge, and terrifying.
I had a flashback to my Panera manager days where I had to always help this woman that came to the store completely covered in plastic, seriously. Gloved hands, plastic bags on her arms, legs, and she wore a mask, because according to her she was allergic to everything. EVERYTHING. I obviously thought this to be odd, because if I had such severe allergies you would never catch me eating out again let alone being outside, but I was the only person ever willing to help her, and she tipped me. I had an image of her clear as day, and I thought oh Jesus that is going to be me.
I panicked all day Sunday by practically overdosing on antihistamines because I thought every tingle or prick in my body was a reaction. My mouth was so dry from steroids as well as the antihistamines I thought my tongue was swelling, again. All, I could do was lie on my couch and try to breathe. Monday came, and I had to go to work.
I have always had anxiety. It just kind of comes with the territory of growing up in a wheelchair, watching your cousins, friends, and family do activities you can only dream of. Yet, I still think I have normal anxiety…..I am not completely irrational…..I stress about bills, and going whale watching because what if a whale tips the boat over? Normal things that normal people have anxiety over….I think. Monday, made me want to become a shut in. I have never experienced such stress or paranoia in my entire life, and I once almost died of pneumonia, and I had staph infection in a leg and asked a doctor to cut it off rather than deal with the pain. I have never been so irrational and terrified as I was this last week, and I suppose that is more what I wanted to write about because it is something I have never had to live through, and I don’t think a lot of people have. I truly lived this last week of my life in utter fear. It is so easy for everyone in the world now to self-diagnosis, yes, you have anxiety, depression, ocd, and bipolar, bravo and a round of applause. Mental illness along with illness in general is nothing to be grandstanding about.
I was not stressed, I was not anxious. I was truly terrified for my life. A little allergy had set me on this roller coaster on how something so mundane and something I love to do (eat) could potentially kill me. I went all day Monday without eating along with popping Benadryl like candy, I must have cried 3 times at my desk thinking my throat was swelling up. I called my husband 3 times so he could talk me down from thinking I was having an allergic reaction. My hands shook constantly, I had to pee all the time but always felt too light headed to move. I could not go home, because that just was not my style at work. I have major roles, things to do, projects to finish and even writing this now I have no idea how my daily tasks were accomplished. I spent my lunch breaks sitting on a planter outside gulping for air only to go back inside and think what if I am allergic to something outside? I was trying to keep my whole system together for 12 hours and it truly felt impossible. One moment my heart was going to fast, the next I felt so light headed I had to hug a wall for a moment, all while swishing my tongue against my mouth over and over again to make sure I somehow wasn’t suffocating. I was brain dead. My day was staring at a computer while my hands typed with a brain in hyper drive. I was having real panic attacks, the kind that physically alter your very being. I was a different person. This wasn’t being anxious about the day being over, this wasn’t stress over bills, and it wasn’t boredom at work. I was truly living 24 hours a day in fear and I had no idea how to stop myself.
I am not a person that cries or admits when little things become big deals. I practically ran to my car on Monday afternoon and cried the entire ride home. I dosed myself at home with Benadryl and pepcid and went to bed. I could not handle the day and I wasn’t much closer to being able to handle the next one. I am probably the only person in history that was put on high dose steroids and lost 8lbs.
Wednesday I was back in the hospital. I had worked myself into a self induced panic attack frenzy. I paced the hallways of the hospital begging my mother to take me home, I stood outside in 110 degree heat because it felt safer than being inside. My hands were bruised from IV’s and my arms were scratched from itching that was never really there. I had lost my cool sometime ago. This is what crazy feels like, this is what anxiety and fear mixed together to make the world’s most toxic cocktail tastes like. I was living in it.
Doctors become very soothing to you when they know you are off your rocker. I was always asked to do things, like “do you want to lay in the bed? would you like a sandwich? can you confirm you aren’t pregnant”? Not that I endorse going to hospitals but if you are a little off your rocker people do tend to be slightly nicer to you, probably because they aren’t sure if you are going to cry or if your chest plate is going to break and come flying at them from your tachycardia.
Krystal meets Ativan. World Slows.
I have been pumped full of enough pain medication for a zoo worth of elephants…..drugs are the always the answer in the autoimmune community because no one can actually cure you. I have an invisible disease that no one can really see much of, but doctors know we live everyday of our lives in agony. Every muscle hurts, but you go on and you move. I do not enjoy pain medication, and I had never had anti-anxiety meds because up until this day in my life I had never experienced terror or paranoia. Let me tell that if I had not been given Ativan I don’t think I would ever eat again. I am not an advocate for medication because I have been on so many meds since the age of 9, but I am not one to turn down things my body needs to survive. The soothing doctor kindly explained to me that I had worked myself into what is known as “the flight” zone. I had entered a realm where everything was deemed unsafe. I wasn’t going to eat, I wasn’t going to breathe the outside air, and I wasn’t going to be able to calm myself naturally before my heart exploded (her words), and so I took the tiny pill and somehow my world pulled back into focus.
I slept. I ate. Two things that are very important.
I am still taking steroids until next Friday…..which as you all know is fine with me, even though they make my eyesight awful, now that I can eat again I’m sure I’ll gain that 8lbs back real quick. I have not taken antihistamines in 3 days, and girl let me tell you that those fuck you up. I don’t take my new sister Ativan unless to sleep and I look forward to the day of being allergy/panic attack meds free.
I wrote this post mainly because it was a horrific week for me. Truly, I have never been scared, more insecure or alone in my entire life, and coming out on the other end of that experience puts a lot of things in perspective for me.
1. I have food allergies, I’ll need to learn the scope of that and deal, which is a challenge and motivation for me. I can make new recipes and get excited about cooking again. Also, I am sure my family will love me again now that I cannot be the shrimp hoarder.