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Wednesday, July 3, 2013

The Canada Day that almost ended me: Aftermath of a Severe Anaphylaxis Attack.

This Canada Day was almost my last.

The day started out with a buzz of excitement...
It was Canada Day!
My husband was off, his 1st Canada Day off since starting with OCTranspo.
We had the new (to us) pool partly assembled and Greg's day off meant it could be DONE that day. Pool... Pool... POOL!
There were sparklers, glow sticks and  bracelets, Canada Day decorations and napkins, 7UP and Grenadine for red/white drinks, Massive Marshmallows and a gorgeous Canada Flag cake bought for later festivities and a fire that night.
While Greg was busy assembling pool bits the rest of us started in on yard work.
 I was having a fabulously rare almost pain-free day and wanted to make good use of it.
Mainly clearing the gorgeous natural stone patio (that used to host an outdoor Jacuzzi) that had been left to grow over the past 30+ years. Day lilies and baby maple trees had come up between the stones and years of growth and death and more growth and death had left a 2-3" layer of soil/grass over much of the stones. 
The clearing of the larger items was 2+ hours of dig and pull work by myself and all the boys in turns, filled 2 yard bags. We also relocated 30+ raspberry canes that had grown in through the stones to an empty spot in the yard. High hopes they will flourish and fruit in the years to come. They are but a tiny percentage of the plants growing beside the car port. We have already been heavily blessed with bounty from those that remain there. It was a good solid morning of work and we were almost done, just the layer of dirt and grass to clear and my Dad ready with the pressure washer to give it a good scrub.

Then as I started to go at the dirt and grasses layered over the stones a familiar itch started in my right eye...
Dropped the shovel and immediately ran inside to see if I wasn't too late... 
Maybe able to wash the irritant out...
I was too late.
My right eye was about 60% swollen shut and my right nostril was closed over by the time I went the 30-ish steps to our bathroom. I yelled for the allergy meds, while I still could and Arthur brought the emergency mini-bottle of liquid Benadryl  kept in my purse. Drank 1/2 the bottle (roughly a 2X normal dosage) as I was told to do my allergist years ago. Then Greg was found as well as the Epi Pen (also in my purse) there was some worry that the Epi Pen had expired Jan/13. We live only 3 minutes from the hospital so the quick decision was made to go to the hospital and not risk the expired pen. Ironically only a few days before my Mum and I had been chatting about how I had a Doctor's appointment coming up to go renew both my Lyrica and Epi-Pen prescriptions.

The hospital trip and subsequent details are very fuzzy for me, Greg had to tell me much of it later.
Both my eyes were swollen shut, I could see almost nothing... Greg had to walk me around by holding my waist and guiding me, I stumbled if just holding his hand. Both nostrils were sealed shut with visible swelled tissue coming out of my nostrils, my cheeks were swollen out and inward... at the height you could not see my cheekbones and my teeth could not close over the flesh invading my mouth cavity. My neck swelled outward but Thank the Gods my throat did not swell inward and my tongue did not swell either... if either had I would have been unable to continue breathing.

The entry point for the allergen was my eye and not my airway, small but crucial blessing. 

They did not want the Epi Pen administered but preferred to wait and let the liquid work. It was super-crazy busy... people lined up and down the halls, both inner waiting rooms full and no rooms to spare. I spent part of my stay in one of the waiting rooms with a kleenex held to my dripping nose. 
Thank the GODS I know proper mediation-al breathing. 
IT SAVED MY LIFE. 
Spent 2 hours with my face up, to achieve better throat air flow, and breathed in... and out, in and out... through my mouth only. In my head I kept repeating Greg, Arthur, Robert, William, Thomas, Mom and Dad... over and over, breath in, breathe out. I went 'away' into myself had to focus out the sounds that were so overwhelming... 
I could not see, taste, feel or smell anything... only breathe in and out...
My Family was my Mantra and I breathed in and out on each of their names. 
At the 2-ish hour mark there was another surge of swelling and the back of my tongue started to swell, but I was still getting good oxygen. Thank-You Meditation-al deep breathing. 
I was moved and observed in the hall until the very next room was ready. 
Saw a doctor quite soon after that, then moved to another waiting room and given Prednisone and Rantidine (Zantac) to help booster the Benadryl along.
After another hour my nose had cleared 2 big globules as well as several small ones from my throat and back on my mouth were hoarked up. 
We were released to head home soon after... Prescriptions for Fresh Epi Pens, more Prednisone (3 days) and Ranitidine (10 days) as well as instructions to take my choice of 24 hour non-drowsy allergy meds for the next 2 weeks. The swelling we were told would take 3-4 days to go down and I would likely not to feel 'normal' for a few weeks. 
This all started about 3 PM and I was on my way home by 9 PM.
Despite the fact that I was barely able to speak between the meds, post-panic and pain, my Jaw was still locked with swelling and I could barely move anything on my face. Blinking sent waved of nausea inducing pain through my being... I soldiered on through the rest of Canada Day.

My family had waited with our big Canada Day BBQ... 
Nobody felt like celebrating while waiting for the phone to ring. So we all sat outside in the beautifully flagged, banner-ed, streamer-ed yard and celebrated. 
There was something to really celebrate today.
I managed to get small bits of food in, torn up since I could not chew and washed down with lots and lots and lots of fluids. The cold creamy cake was the best-est thing I have ever tasted... it was pure ecstasy going smoothly down my ravaged throat, the heavy mouth breathing took it's tole. The rest of the day passed in a haze... 
The fire and marshmallows did not happen, everyone was very subdued. I was watched constantly since there is always a risk of resurgence within the first 24 hours post attack. They watched me... We watched the fireworks on TV. Though the original plan was to go see some live.  I stayed up long enough to take 2 doses of meds and have some 'Walter Time' watching Fringe on Netflix. Could not see 1/2 the screen but I could hear.

The Night was HELL. 
Sleep was disturbed every hour or so as the swelling settled into the side of my face that was down... the Jaw pain was the worst. I would wake and flip... only to wake again in an hour to flip. I held the Rose Quartz piece I keep by my bed... there were so many nightmares but I was too wiped to get up and walk about. I tossed and turned.

The next morning the swelling was worse than it had been when I left the hospital. The pain was so bad... and I could barely see again. Only straight ahead and my eyes were leaking a runny jelly-like substance constantly. Very sh-exy I tell ya. The pressure on my eyes made my glasses not work, they could not sit right on the swelled tissue and my eyeballs were bulging changing the alignment as well. I had a terrible headache for the entire day.
I could not handle people, talking, dishes rattling, doors closing, toilets flushing, traffic outside, TV, radio, dogs walking about on the hardwood... the looks... the concern or lack thereof... the dishwasher not getting loaded since I could only see straight ahead or the patio that started it getting cleared... tripping over shoes and dogs...
So I went and read for 4 hours in the park, hidden behind a hill because I looked hideous. Once a  little 3-ish year old girl wandered over, I looked up and tried to smile, she ran quickly back to her mother and hid in her skirts. 2 teenage girls went by whispering and pointing... I read on. More people passed, my kids came and left at intervals... I read on. I could see the book if I held it up and read with my glasses off. 
When it started to rain I finally went home. I did not want to: The Park felt safe, my favorite tree felt safe, Home did not feel Safe. 
I stumbled through the evening still unable to chew or move my jaw, took my meds and read.
I also cried a lot... thoughts ran rampant... 
I wasn't safe... I should have died... I was blessed to be alive... People would be better if I had died... My kids needed me... I ruined Canada Day for everyone... The kids didn't get their fire... The pool was not done... Thank Gods it was Greg's day off... I needed to finish the mural painting in the house they are to be my children and grandchildren, as is this house, when I'm gone... Dishes for 2 days were piled up... who was going to finish the Patio now???
...and I read. 

Today it is 2 days later.
I slept a little longer between flips...
I still held the Rose Quartz...
 I still had nightmares...
 My Jaw still can't move...
 and I hurt.
 I CAN see more today though.
Also, I stepped out into the backyard again... 
THAT was HUGE. It was 5 minutes... but even that drained me.
If I was not drug hazed the night I returned I don't think I could have sat out there as I did. 

I WILL be OK.
I. just.need.time.
~Please be patient~
Thank-You.

Day before, heading out to a BBQ and Fireworks Party
Taken June 30th:
 Taken June 30th:

 4+ hours in, post-meds about 30% swelling reduced, Redness gone
Taken July 1st around  7:30 PM :
 

Home after being released from the hospital
Taken July 1st  around 9:30 PM :

Day 1 after getting up
Taken July 2nd  around 11 AM:

Day 2
Taken July 3rd  around 8:30 AM:



THIS helped me a lot to read... 
There is very little written on the emotional roller coaster ride after the 'EVENT' most are centered around attacks causing PTSD. 
This is *perfectly* expressed. 
Though from a very catholic point -Read: Not my spiritual view- 
Still QUITE relevant. 
I went and talked to a tree and walked barefoot on the grass, dug my toes in the dirt and was visited by scores of squirrels, dragonflies, robins, chipmunks and butterflies in the park.

From cache at: The Durham Catholic District School Board


The Post-Reaction:
Dealing With the Aftermath of an Anaphylactic Reaction
Written By: K. Brady

Of all of the articles written to date by me this has been the hardest to write, because I have had so many reactions, it is hard to write about the emotional response to anaphylaxis. While anaphylactic reactions are difficult to experience and witness, it is the aftermath of these reactions that cause a strong emotional response.

Anaphylactic Reaction:

Whether you are witnessing a person going through an anaphylactic reaction or you are the one having a reaction, the response is usually the same: FEAR! If you witness the attack you become fearful that the person having the reaction may not make it through or that perhaps you feel you may not have followed the treatment properly (gave the Epi-Pen correctly or fast enough) These are very normal responses. But if you are the person having the reaction your response is much more intense.

You may still have the same fears as the witnesses but you will feel other things as well. PANIC and FEAR dominate the thoughts of the person having the reaction (victim). You are also feeling the affects of the medication used to control the reaction and the bodily response to the allergen itself. All of these things combined play an important role in the victims thought processes after a reaction.

The Post-Reaction:

There are many thoughts going through the victim’s mind as he or she heals from an anaphylactic reaction. Because we can’t control our environment 24 hours a day 7 days a week, reactions do sometimes occur. The first problem is helping the victim feel safe again. When you have a reaction as severe as anaphylaxis there is a very real possibility of death occurring. Children suffering with anaphylaxis know this very well (especially if you have had a reaction before and remember it). The feeling of safety and a safe environment are therefore compromised.

The first thing we must do as parents, guardians and educators is help that child feel safe again so that they can focus on developing properly, in both academics and emotionally. Also victims may feel embarrassed, ashamed or guilty about their reaction. They may feel embarrassed because other people may have witnessed their anaphylactic reaction (which may include uncontrollable crying), getting into the ambulance (because no one likes to receive that kind of attention), or sometimes victims of anaphylaxis vomit or have accidents from uncontrollable diarrhoea

They may feel shame by thinking that they should have controlled it. Even I, as an adult who knows that I cannot control it, feel shame every time it happens because I feel that I should have been able too.

We also may feel guilt for what we missed that day, for calling our parents/guardians away from what they were doing that day. It is not the type of attention that makes us feel good about ourselves. Victims may feel constant fear and anxiety. They may not want to go outside their home or have become distant and push others away. They may have nightmares or have trouble sleeping. These are all normal thought processes for victims of an anaphylactic attack.

How Can We Help The Victims of Anaphylaxis?

1. The very first thing we can do to help victims of anaphylaxis is realize that you can’t fix it. Unless you can take that allergy away, then you can’t fix the problem. Victims of anaphylaxis always have to live with the knowledge that a reaction can occur at any time, and you always have to be prepared and proactive.
2. Be a good listener: listen to the victim talk about their feelings. Do not feel that you have to provide an answer, because you don’t. Sometimes the victim just needs to feel that someone is listening and talk through their emotions. You can also give your child a notebook and tell them that it is their feelings journal. They can use it to write down how they feel about what happened. Even pre-writers can draw pictures about their feelings. It is another way to express their emotions.
3. Go over with the school, daycare, victim and family members the plan of action for anaphylactic reactions and have practice drills (much like the fire drills at school). This will help the victim feel safer again. But wait at least a week before practicing the drills. Doing this too soon after an anaphylactic reaction can have the opposite affect then the desired one. It can cause anxiety and nightmares.
4. One of the most important things that I will suggest is speak to your priest. Our faith is one of the most comforting things that we have as Catholics and Christians. He is an excellent person to provide counsel to both the victim and their family. Sometimes the priest may perform the Sacrament of the Sick or Dying. This Sacrament provides peace and brings God closer to the victim.
I want to take this opportunity to share a little story about #4 on our list. When I was a student teacher (in teacher’s college) I was working at a school in Pickering for my placement when I had a very scary anaphylactic reaction. It was Ash Wednesday and the whole school was in the gym to receive ashes from Father. After the Mass we were going back to class when I smelt a very rubbery smell. There were some men cleaning graffiti off the school when the smell of the latex travelled through the vents and spread throughout the school. I instantly felt my chest tighten, my eyes swell and my throat begin to close. I went to the office for my Epi-Pens. My reaction was very severe.
I do not remember the ambulance or parts of being in the hospital, but I do remember that the priest followed the ambulance and when he came into my room to see me I was having difficulty breathing. He performed the Sacrament of the Sick or Dying and I instantly felt better, more peaceful. The doctor was going put a tube down my throat and into my lungs to keep the airway open, but he no longer needed to. I remember that feeling and I try to hold onto it whenever I have a reaction. I do not remember the priest’s name or his face but I will never forget what he did for me that day.
Anaphylaxis is on the rise and people can be diagnosed at any age. I know this all too well as I was 20 when I was finally diagnosed with an anaphylactic latex allergy. I had a few reactions before we realized what I was reacting to. People with anaphylaxis can lead normal, productive lives. All it takes is some public education, faith and a little understanding.

Yours in Christ,
Mrs. K. Brady

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