Craving Solitude

July 15, 2017

I just wish I could cry. I’ve spent the week recovering from the crisis. I didn’t go to work, the camping gear still isn’t unpacked, we ate mostly salads for dinner, and the laundry is backed up. I made time to take my son to counselling, which he didn’t really end up needing after all. He talked to her alone for an hour and she gave me the all clear, saying that he was excited to go on other camping trips and wasn’t negatively affected at all. 

I’m trying to get back into my new routine; I did my regular weekly walk with a friend this morning, ran some errands, cleaned house, etc., but all with the threat of breaking down crying hanging over my head. It’s so hard to just have to get back on the horse again and again and again. When I didn’t have a chronic life-threatening illness an episode like the one last weekend would have been a big deal, one that was unexpected and worthy of time to work through. When it’s just a semi-normal part of your life it doesn’t feel right to dwell on it or give it any time. I don’t want to worry my friends and family any more than they already are, so I feel I have to minimise it, even though I’m having a really hard dealing with it myself. 

I wish I could cry about it all and get it over with, but the tears just won’t flow. There’s an emotional block in me that won’t let me be that vulnerable. Instead I’m tired and short tempered. I’m trying to avoid my husband and son as much as I can, since generally the people closest to you are the ones that annoy you the most when you feel like this. It doesn’t work. I swear they both get less independent the more I need them to be. 

I just want to be alone. 

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Death in the Valley

July 9, 2017

This weekend was my second camping trip of the summer. In Canada, for the 150th anniversary, all National Parks have free vehicle admission for the entire year, so back in March we made a reservation to go this weekend with our closest couple friends. We went to Grasslands National Park, which is a native prairie preserve known for its rolling hills, deep coulees, badland features and stunning vistas. With the new prednisone regime that’s been working out so well I was excited to bike and hike and get to see things I was once worried I’d never get to see again. 

I’ve always consider weather just a part of life, and you need to accept it, dress and plan for it and move on. It’s not something that should stop you from enjoying life outside. When you live in a place with seasonal changes of 70 degrees Celsius you learn to work around it. Unfortunately my theory didn’t pan out in that particular location in this particular weather. 

There was a heat warning. We planned our best for it, leaving for the backcountry bike ride earlier in the morning, using tons of sunscreen and reapplying often, choosing a trail that had a point halfway that we could turn around at if it got too strenuous, bringing full hydration packs plus extra water bottles on our bikes, high calorie snacks, appropriate clothing: everything our collective wilderness and survival training had dictated. The other couple, my husband and my sons’ bodies could handle the extra stress from the heat but my Addisonian body couldn’t. In addition to all the regular planning I had made sure to hydrate the night before and the morning of more than usual, and instead of up doseing my prednisone by the more typical 1mg had decided on an extra 5mg before the ride. I carried extra steroids, my injection kit and a bottle of Gatorade in my pack. 

It wasn’t enough. I started to feel weak so I took 1mg more of prednisone. Then my 5 year old son stepped on a cactus and started crying and complaining that he didn’t like the bike ride. I want him so deeply to love nature as much as my husband and I do, so I ignored myself and focused on him. Of course I first took the cactus spikes out of his sock and shoe, gave him some of my Gatorade, and told him I would push his bike up a hill so he could get some rest. My husband had been doing that for him, and for me at times, but at that particular point he and our male friend, J, had taken a side trail for the view. I told my son about how, during the Great Depression, the farmers would burn cow patties because there were no trees to burn to keep their houses warm. He’s five, so the poop history was a big hit as we walked along dried buffalo poop. 

And then the symptoms hit hard. I slowed to a halt and my legs wouldn’t listen. My heart rate jumped to 180 and I started slurring my words. I was confused. J and my husband caught up with us and J started biking towards the truck while my husband took our son and trudged along up the valley. My female friend, C, stayed with me. I asked her to get me my pills but couldn’t count or read the bottle to see the dose. I needed my emergency injection. I lay down on the dry prairie grass and C read the instructions and prepared my shot. It was terrifying. I’ve been in crisis before but this one was perilous. I knew how far the truck was and I knew I couldn’t make it there. For the approximately 5 minutes it took C to get the shot in me I lay down in the blistering heat and felt like I was drowning in hot air. I’ve been hypothermic which is I think a nice way to die. You feel very calm, relaxed and sleepy; as if after you close your eyes and take a nap everything will be perfect when you wake back up. Hyperthermia on the other hand is terrifying. As an atheist I don’t believe in Hell, but I can see why the church would use it to scare people into submission. You feel like you’re breathing through a straw into an oven, sweat is beading off your skin and your muscles are twitching on the inside. You want to keep your eyes open to help stay conscious, but the light from the sun is blinding. I did not want to die, but more particularly I did not want to die there. Dinosaurs died there and left their fossils and I felt immense pity for the massive beasts. I could picture my skin burning to a crisp on my corpse while my friends and family stood by helplessly. 

The shot started to work. Slowly I made my way, one foot in front of the other, out of the Valley. I didn’t know the truck was heading down there, but even if I did I had to get out of that place no matter what. I was not dying there while I still had a choice. Slowly, ever so slowly, we made it up the steep hill. I was feeling better, relatively anyway. I knew the shot wouldn’t last long and that I needed medical attention, but it seemed possible to make it to the truck and buy my malfunctioning body some time in the air conditioning. 
I burned through the medicine like the rope on a piece of dynamite as we half-walked, half-rode in the direction of the truck. After what seemed like hours but was probably 20min I saw the silver hood of the truck peaking up from a hill. A wave of relief washed over me and I immediately sat down to conserve the energy and medication I still had. 

From that point on the danger kept decreasing. We loaded me and my son, who we had shielded remarkably well from the severity of the situation, into the cool truck and started heading towards the trailhead. We had to stop to reconnect an electric fence J had disconnected and I took the alone time with my son to see how he was doing and tell him the plan. Although I was slurring my words I was able to explain to him that I needed medicine that I could only get from a doctor and that I was going to have to go get it. The next hill we went over our luck increased even more. There, in this remote corner of the park was the park warden parked on the road. No doubt he saw an unauthorized vehicle on the trail and stopped to issue a fine, but I knew he would have radio or Satellite phone access to 911, since cell coverage was spotty to non existent. 

We quickly established the severity of the situation and what my medical needs were. At this point I was safer than I had been at the bottom of the valley, but my low cortisol symptoms were strong and still increasing. I wondered if we would have to administer my back-up shot as well. I got in his truck, he started driving towards the main roads and radioed for dispatch to call an ambulance. I told him it was an Addisonian Crisis and I needed both IV Saline and Solu-Cortef. Because of the remote nature of the area, a first responder team started heading towards us from one direction while a proper ambulance started heading towards us from another. The plan was to transfer me to the first responders, who had some tools, equipment and training, but were not as qualified as the Emergency Medical Technicians (EMT’s) in the ambulance. The first responders were able to make me comfortable, administer oxygen and gather information to relay to the EMT’s and hospital. They could not administer an IV. 

When the meet up with the ambulance happened the EMT grabbed his bag and joined us in the first responder van. He hooked me up to a bolus IV, we started on the way to the hospital and very quickly my condition improved. I still badly needed IV steroids, but I knew I would get the treatment I needed in time. We were still 85km from the hospital, having already traveled 80km. Throughout the ride I tried to stay conscious but it was very difficult. I was very weak and wanted to sleep. My heart was still racing and the EMT relayed that the monitor showed Sinus Tachycardia. I was confused and had a hard time answering questions, but I had all the information they needed in my emergency kit, the medical screen on my phone as well as my medic alert bracelet. My pupils were sluggish and I was extremely nauseous. My skin was cold but I was feverish. Breathing, even with the oxygen, was laborious and I took fewer breaths because of it. Plus, I had to pee so badly I feared I wouldn’t make it without voiding on the stretcher. That prolapsed bladder really adds insult to injury at times. 
We made it to the hospital, I made it to the bathroom, and I almost immediately saw a doctor and was hooked up to IV steroids, fluids and anti-nausea medication. My condition improved more and more over the next hour. Unfortunately it didn’t last and I started to feel weaker and more nauseous. I told the nurse, she got the doctor and, after she consulted with the internist, I was admitted overnight in order to receive more of the same IV medications. I was disappointed of course, after all I was camping, one of my favourite things to do, but I didn’t have much fight in me. 

The rest is all minor details. My husband went back to the campground to join J, C and our son, I was admitted and received the medications, slept poorly and continued to get better, although not really as better as I had thought I would get. I spoke with a wonderful internist, who commended our initial plan, our evacuation process and even the fact that I’m still continuing to do adventures and live my life, although he recommended skipping days with heat warnings. I strongly agreed. He did say that I may have worsened my outcome by drinking too much water and flushing out my electrolytes. Staying hydrated was definitely the right thing to do, but I should have supplemented with more Gatorade and less water. We spoke about Addison’s disease, he praised my knowledge of it and together we decided I could go home and treat myself as it was the best choice for my family on a Sunday night, but with strict instructions to go to ER if my symptoms started flaring up. He ordered me one more IV of steroids and in a few hours I was on my way home with my brave husband and loving son. 

We’ve been home for a few hours now and I’m ready for bed. My son is emotional and had a hard time calming down and getting in bed. I promised I’d bring him to my bed when I go to sleep. I’ve already emailed work and cancelled for tomorrow (and possibly Tuesday) and plan to spend the morning watching TV and cuddling with my boy before I take him to daycare. The afternoon I’ll rest in bed. I spoke to him about what a counselor is and I’ll be calling to get him an appointment. We all did the best we could for him as far as explaining what was going on without giving too much details, but it was a major event that I’m not sure we can handle on our own. 
While laying with him to calm him down he asked if he would get Addison’s Disease since he got Celiac disease too. It’s proof he has thoughts deeper than I know how to access and go through with him, and my husband and I need help to learn how to guide him through, or just to give him an alternate place to share those feelings. 

I’m very emotional now and I know I will be for a few days. My husband and best friends saved my life yesterday. I’ve had other crises but they were in the city, and handled by medical professionals whom I couldn’t put a name or face to now. These were people who love me, care for me, and had to work together in a remote emergency situation. The ironic part is that of all of them I have the most formal training in those situations. They did an absolutely incredible job and me being here is the result of their combined efforts. I can never repay them for what they did for me on that trail but I know it’s not necessary. They did it out of love for me and to know people care for you that much is a feeling words can’t possible explain.