So I’m currently off work struggling to breathe. Life is looking very short as a result. I’m facing my 45th birthday in a matter of weeks and I’ve spent my entire life dealing with different health issues.
Ironically, despite having some pretty rare conditions (which I’ll talk about another time) it looks like it’s going to be something as simple as an orange based cleaner that’s curtailing my adventures through life.
On May 11th 2016 I had a massive anaphylactic reaction. I’ve experienced anaphylaxis before but this was faster than any I’ve ever had before. So fast, that I couldn’t either get away from the trigger or self-inject my Epi Pens.
Thankfully, I was in my doctor’s waiting room at the time and my doctor was able to assist me. Medication, oxygen, an ambulance ride, several hours in ER and I’m sent home to recover. Bizarrely I’m safer at home than I am in the hospital.
My exposure was to an orange product. Somebody just didn’t think and sprayed a citrus based cleaner/air freshener right behind my head. This was in a scent free building; an office building dedicated to health care. Yet somehow, the fact that it was a “natural” product led this person to think that it would be OK.
I nearly died. Anaphylaxis can cause death in less than 15 minutes. A biphasic (secondary) reaction can happen several hours later and also cause death.
In one of the few places that I didn’t think that I needed to be hyper-vigilant I found out that I did. I’m used to watching for somebody starting to peel an orange or squeezing lemon or lime into a drink or onto their food. I can smell citrus at great distances. Usually, I can move away from the exposure and ask somebody else to remove it for me, if I can’t leave completely. This time it was in an aerosol. I had no chance.
My skin starts to get itchy, my service dog is acting up and starting to pull at me but my brain isn’t working quickly enough already to connect his behaviour with what’s happening. I’m coughing and gasping for air. People are looking – they’re asking if I need water – I think… I’m deaf… I can’t watch faces closely enough to ‘hear’ them… I need help. Now!
People are panicking. I’m still trying to get enough words out to explain while trying to get my Epi Pen out of it’s case. It’s been less than 2 minutes and I’m already shaking too much to self-inject. I’m going to die. The thought makes me laugh; which doesn’t help.
I’ve lived through multiple car accidents, severe trauma, lived with life threatening conditions my whole life and here I am, dying due to an orange!
My doctor hears the commotion and thankfully realizes the problem; pulling me through the doorway as I’m collapsing on the floor. My dog, my gorgeous Kai, is concerned and trying to help. He’s not.
I’m trying to get a hand free to signal him at the same time that my doctor finally gets that shot in my leg! Kai obeys. He sits and watches closely. He stops trying to put pressure on my chest. He’s trained to place his weight on the places where I have pain. He’d never been through this with me before so he was doing what he knew.
Staff are calling 911. Patients are concerned. I’m on oxygen now and a monitor for my heart and oxygen levels. My oxygen levels are low – vey low. My heart rate is high – very high. Finally manage to get the word “orange” out and my doctor starts asking people about oranges. Somebody brings over a can – it was an aerosol of some form. They can’t remove the exposure. It’s now in the air. No choice but the ER for me. More medication – full on asthma attack now.
Paramedics arrive. They can’t get their monitors to work. No breath to explain that it’s a common problem. They check my vitals again with my doctor’s equipment and get me up on the bed. Kai jumps up too and snuggles in for the ride. Somebody gathers my purse and the used Epi pens and inhalers and adds them to the bed… we’re on our way.
Downstairs and in the back of the ambulance now. They need to get me stabilized before leaving for the hospital. I should be doing better, now that I’m away from the exposure. I’m not. Can’t get the IV in the first hand. Let’s try the other. Oxygen mask slipping. More inhalers needed. Finally the IV goes in and the paramedic starts infusing liquid antihistamines. It’s cold as it threads up my arm. Leaning forwards. Can’t lie back as I can’t breathe then… Must use my back muscles to force air out of my lungs. I know how to do this. Breath in and out, as so through a straw. Coughing again. More inhalers. The ambulance moves off. No lights or sirens today.
On route; more inhalers needed. Getting dizzy and light headed now from the amount of medication now in my system. This is on top of the amount I take daily to just live in a world that is inherently unsafe for me.
On arrival at ER the paramedics get me registered. A nurse helps me change into a gown and they hook up the heart monitors. Once again they don’t work initially. Still can’t explain that this is usual for me.
The nurses are great with Kai. We’d not trained for this yet. My last Service Dog (SD) had been to the ER with me several times in non emergency situations; had been exposed to paramedics and all other emergency response people and been in and out of ambulances and fire trucks. I hadn’t had chance to do this with Kai yet.
Kai jumps off the bed and stays with a nurse while they get me changed. He’s watching closely. As soon as he’s given permission he’s back up on the bed with me. He’s not impressed with all the cables and needles now connected to me. Are they painful? He sniffs at them, sniffs at me, and somehow he knows… we’re going to be OK.
He turns round, snuggles down and relaxes completely hooking his front paws around my arm. His calmness helps me calm down. The panic response in me starts to calm down. My breathing starts to respond to the medications better. My heart is still not doing so well but it’s not getting worse either.
All those hours of teaching Kai to be calm are paying off. He’s calm. My world will be OK. Nurses come and go checking on me. They’re monitoring me closely in case of a secondary reaction. They’re having a horrendous day in the ER. I give permission for several nurses to pet Kai; it helps them and it helps me reinforce to him that the ER is a good space where people are helping me. I’m so proud of the fact that they all asked permission first. So many people assume that they can pet a service dog, without asking, which puts many handler’s life at risk.
Several hours later and the doctor comes to discuss next steps. I can stay and be monitored or, if I live close enough to the hospital, I can go home. We agree that I’m safer at home at this point. I’ve already seen a nurse with lemon in a diffuser water bottle. I can’t risk being exposed to citrus again today. I’m safer at home. I text a friend and she comes to take Kai and I home.
At first it doesn’t seem like such a big deal. It was an allergic reaction. I’ve had them before. But over the next few days I don’t recover properly. I have to miss teaching a class and get a colleague to cover for me. I re-plan my last few classes so that I’m talking less. I’m not doing so well. I’ve taken one course of high dose steroids. My doctor follows that with a tapered course. I’m still not doing so well. Classes are finished. Just marking to do. I can do that from home. I stay home as much as possible. Reduce as much risk as possible.
Still not doing so well. I’m struggling emotionally too. How do I deal with the fact that one minute I’m dying and a few hours later I’m going home from hospital as so everything is OK? – it’s not!
We try increasing my usual medications. Doesn’t help. Another course of steroids, another tapered course. Sleep, always an issue, has long gone.
June 16th 2016. Up at 4am to let the dogs out. (I have a pet dog too). As we come back in Kai is alerting to the fact that I need to sit down, now, and take my inhalers. I’m not responding quickly enough for him. He escalates his alerts, just as he’s trained to do. Unfortunately just as I finally sit down he jumps up to put his paws on my shoulders. We butt heads! I see stars! Literally – it’s true, not just a cartoon effect. I felt it go. My nose is broken. I have a long, long history of broken bones. I can’t put this one right myself.
Make up the Kongs, crate the dogs and head to the ER for the second time in a month. It’s 4:30am and they’re suspicious of my ‘story’ about my dog hitting me. Perhaps I should have brought him with me?
In the knowledge that I needed my nose reducing fast and that I might be needing surgery I left him home. I have the right to have him with me anywhere anybody can go in street clothes; as long as I can see to his needs myself. As a team though, I need to consider his needs as well as mine. The ER will be quiet at that time in the morning. If they need to operate on me he’ll need to be taken home. If I leave him home, my friend (and back-up handler for him) can go get him and bring him in later if needed. So I left him home.
I reassure the staff again that, on this occasion, I wasn’t the victim of abuse or domestic violence. (Where were those questions in my past?).
The doctor listens to me! He listens to my explanation of my medical conditions and why I’d prefer that he reduce it immediately if possible rather than surgically. He agrees that it would be best. A number of very painful injections later and we both cringe as he manipulates the pieces back into place with a definite sound. He looks at photos of me from my phone to see if we’re somewhere close to what it looked like before (Note to self – make sure to have a good straight on photo on my phone in the future). We discuss management and when to go back to hospital. I go home, let the dogs out again, email in my apologies to work once more and try to sleep.
The doctor did a great job with my nose. The bruising is minimal; the swelling isn’t bad and ice is helping. The pain is bearable… but then again that’s relative when you live with pain everyday anyway. I work from home and postpone what I have to. I’m still struggling to breath.
Back at the doctors and we continue the steroids again. Add in new referrals to the asthma clinic, the local specialist as well as the one that just comes to our community every few weeks. I’m signed off work.
The heat isn’t helping. Late 20’s and it’s hot and humid, especially for northern Ontario, Canada. I get a call from the asthma clinic; can I come in straight away as they’ve had a cancellation. Trying to make out what they’re saying on the amplified phone is like hearing under water at the best of times. I can’t hear much past my own struggle to breath. Somehow we manage to agree that I’ll head straight in.
I leave Kai home again. I don”t have the energy to explain that I have the right to have him with me and, God knows, I don’t want to expose anybody else to their allergens. However, he is a standard poodle so he’s a very low allergen risk. He will go with me another time. The staff aren’t usually the problem – it’s other patients. I don’t have the energy.
I get to the clinic and just driving 2 minutes has triggered a full asthma attack again. The receptionist works out who I am! I take my inhalers and recover as much as possible.
The asthma educator comes and gets me. Between coughs and wheezes I explain the situation. We review my medications. I’m maxed out. I try and provide a spirometer reading but can’t exhale long enough. She suggests that a COPD medication might help and will fax my doctor’s office for a prescription. We agree that I’ll return to the high dose steroids rather than continue tapering. The asthma/allergy specialist offices calls while I’m with her and she kindly takes the call for me. An appointment is set for Tuesday.
We agree the protocol for when I need to go to the hospital. She insists that I use 911 and not take myself! Thankfully I now have text 911 set up. I make my way home and it takes me the rest of the day to recover.
2 days later and I’m still struggling to breath. I can’t walk more than a few feet without having to stop. I can’t talk without coughing. I can’t lie flat without coughing. Sleep comes and goes. 8-9am seems to be the only time I actually sleep at all. Why then? I don’t know. Usually mornings are my good time.
I’ve now been pretty sedentary for several weeks. Almost totally so for the last week. My iPhone steps is recording less than 175 steps a day, instead of the 8-10,000 that I usually try and maintain. My joints are seizing up with the lack of movement. I try and exercise gently but that triggers coughing again. Breathing has to come first just now. Pain levels are ridiculous.
My home is set up for an old lady. I have night lights everywhere. Nothing on the floor for me to trip over. I need handrails to even use the toilet. My shower is a walk-in with a seat. All this has been helpful before; now it’s essential. I’m so tired.
Tuesday. It’s now Sunday night. I have to get to Tuesday before I see the specialist and hopefully he’ll be able to help me. I can see my world getting smaller in front of me. My mum checks in by email. There’s nothing she can do. A friend kindly drops off some gluten free bread from the farmers market for me. She delivers it to my garage as I can’t risk spending time with her. I can’t talk anyway but neither can I risk exposure to any scents/perfumes/smoke she carries with her. Another friend drops off a treat – coke 🙂 I’m gaining weight – I’m doing nothing but sitting, watching Netflix, reading Facebook and eating.
Something needs to change. Another friend texts me from Alberta where she’s recovering from knee replacement surgery. She sends me links to writing fiction and suggests a number of funny story lines based on the farce that is my life. She knows me well.
A friend on Facebook, a published fiction author, posts a link that was first posted in a Facebook group for writers. I join it. Somebody posts a challenge: Using 6 words only, make someone’s day.
I post “Oh my God, I can breathe!”
I pray to God that soon that phrase is something I can say, without coughing and wheezing, and that it will make my day.
I watch as others post their responses. Other challenges are posted. It makes me think. What’s stopping me from writing?
Hopefully we’ll get to the bottom of what’s causing my breathing difficulties and I’ll be back at work soon where I’ll continue to publish academically. I’ll also continue to write for the general public about my work in ways that are understandable and I love it. I’ll teach my students to write in different styles and voices.
Despite all this though, there’s still a voice inside of me that’s crying out to be heard.
For years I’ve thought… when I’m on sabbatical I’ll start writing then… when I’m on holiday… once this, once that…. always some time in the future…
Then it hits me. To be a writer, one just has to write.