Passing on More Than Genes

August 16, 2016

My 4 year old son broke his arm and fractured his wrist today at daycare. He was making some kind of leap frog motion and landed on his wrist, although he’s adamant that they were playing Star Wars, and told every nurse and doctor. I was glad he spoke up for himself and took control of the situation in his own way. He was brave and stoic in a way that was far beyond his 4 years on this earth. Nurses, doctors, the x-Ray technician, patients and their families took notice of it and remarked to my husband and I how brave he was, and some were visible shocked when learning that he had a broken arm and wrist. At first I was proud and pleased with his reaction to the pain and the situation in general, but as it dragged on for over 5 hours I started to get concerned. That was exactly how I was as a child. Once at a doctors appointment the doctor closed the door, pinching my finger in the hinged side. After a few minutes my mom noticed I was tearing up and they both realised what had happened. Another time I complained of a cold and it turned out I had a collapsed lung. I remember taking great pride in not reacting whenever I got a needle, just like my son does now. Is that sort of bravery part of what causes me to push my body until I collapse? Is that what I’m teaching my young boy to do?

I stopped encouraging his bravery and tried to start nurturing him instead. I stroked his hair, told him made up stories, itched his back, told him it was okay to cry. We were seen by an orthopaedic surgeon. First thing in the morning we’re going back to the hospital to get his arm bone set, which may or may not result in his wrist fully breaking, in which case a temporary pin will be inserted. When we got home we had a pizza supper served on the couch in front of the Television. We decided to give him a dose of Tylenol, not because he was complaining about the pain, but because we wanted to ensure he slept well. As my husband passed him the medication he moved his hand to itch his back and the small plastic cup fell onto the floor, spelling the contents everywhere. My son broke out in tears, the hot streaming kind that accompanies loud wails. After it became clear to me that my husband was more concerned with cleaning up the Tylenol, I got out of bed and scooped up my boy. I held him on my lap, rocking him back and forth telling him over and over that it’s okay to cry. Repeating I love you like his whole emotional maturity depended on knowing how much I loved him. I doubt he knows it, but he wasn’t crying about the dropped medication. He was crying all the tears from all the pain and sadness he hadn’t allowed himself to feel.

He’s sleeping soundly now tucked into his bed with his arm propped up on a network of pillows and blankets. He looks so beautiful and serene. While I often consider how much I hope he grows up healthy and gets his health from his fathers side, I’ve rarely thought about the non-physical legacy we pass to our children. This part we actually have some control over, and I’m still trying desperately to figure it out for myself. I wish I could protect him from the character traits that have both nearly killed me and kept me alive.

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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. 

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.  

Feeling Well?

April 13, 2017

I’ve been so well, uncharacteristically well, for almost 4 weeks! Every day I’ve gone for a walk, as well as kept up with the household chores and taking care of my son. I’ve done extra things like painting a dresser, de-owning more possessions, baking, meal prep, and social visits. I’ve done favours for friends and it’s made me feel so good to help loved ones. This is the best I’ve felt, continuously, in over 2 years. 
It must be the prednisone. 5 weeks ago I finally got around to testing it out instead of hydrocortisone. I’m on a fairly large dose for adrenal insufficiency, 12.5mg split into two daily doses, but it’s wonderful. I don’t feel like I’m constantly crashing. I wake up groggy and weak, but within an hour I feel ok, and it generally lasts for the rest of the day. My chest pain was almost non existent for a while, but as I feel better and increase my exercise, it creeps back in. Not nearly at the level it was before though. 

It’s definitely time to try working. The process is difficult though, and I feel like I can’t trust my manager because of his change in plans, and general unprofessional emails about it. I know I can do some office work, but am worried about what that looks like, and I don’t want to put myself in a position that will negatively affect my future. I’m most afraid of getting fired if I can’t do the job. If I go back with the proper supports and protocols in place that can’t happen, but if I forgoe those and do what my manager is suggesting, I’m afraid that’s a possibility. I believe his motives are pure and they just need me back because of increased workload, but I still have to protect myself. It’s unfortunate that it’s happening. It’s be nice if it was just easy and I could trust the system, but my priority is my and my families’ future. 

I see my endocrinologist in a week and a half. I plan to stay in the prednisone for at least the next 6 months to see how I feel. He may adjust it, but I’m okay with that. For now I’m just enjoying feeling this way. It’s been so long since my life wasn’t dominated by weakness and fatigue and in a way I feel reborn. 

When Life Gets Weird

June 18, 2017

I’ve been back at work for 2 weeks now, working 15 hours per week. It’s felt both natural and odd at the same time. It feels normal to be back in an office, in front of a computer like the majority of adults everywhere. I’m comfortable in the building and have no problems asking for the things I need (new chair, light bulbs changed, passwords for the printer, etc.) but at the same moment feel completely separate from the people around me. 

I don’t have much in common with my coworkers anymore. My priorities have changed so much and my outlook on life is drastically different than it was before. My career is only a small part of me now, and I hope to keep it that way. I want to do a good job and have my work be something I can respect, but I do not want to bring it home, either physically or emotionally. I do not want to sacrifice my health for a job anymore. I want to remember that, if I need to recover from an illness or injury, I can take a couple weeks off to do so. I do not want to wake up in the morning feeling like death, or fear falling in the street on the way to my car. I don’t want to give all my energy into something that doesn’t matter at the end of the day, and isn’t appreciated or noticed by my superiors. 

I don’t have much to say during coffee and lunch breaks, when everyone seems to be bragging about their material possessions or planning a new purchase. I sound like a fool when I mention something I don’t have (and don’t want) to a group that equates success with excess. 

I like how low stress my life is and I want to keep it that way. 

What Now?

May 4, 2017

Another chapter is beginning. I have a conference call tomorrow morning with my manager, disability management advisor, and labour relations advisor to determine my next step. I’m going back to work. I will start in the office, and part time, and then will see what I can do. 

I saw my endocrinologist as well. I’m staying on the prednisone, up-dosing with it for activity, lowering my thyroid replacement, and increasing my Florinef. Hopefully all those changes will bring about a healthy me, or at least as healthy as I can get. I still have a hard time wrapping my head around this being Addison’s all along, a flare-up and insufficient steroid coverage leading to near crisis for over 2 years. Or maybe it was all steroid myopathy brought on my mistreatment in the hospital. Perhaps I’ll never know what really happened. Perhaps it will happen again.  

I guess I’m just supposed to trudge on as if it’s all over; live life like I’m normal, forget about my fears. I’ve made a start by unfollowing any Facebook support group that doesn’t apply to me. It’s hard to move on. It’s hard to attribute symptoms to my pre-existing conditions and then try to manage them. My life is hard because my body is complicated. 

Now though, even when it’s hard I have a window to a better way. I’ve been biking and walking. Spending time outside actively is so refreshingly normal and rejuvenating. I’d like to say I feel like myself again, but I’m no longer sure who that is. I don’t know what to strive for or who to try to be. I no longer know if I care. 

This experience has taught me to live in the moment, because the next isn’t promised. For now, I just want to simply be. 

Old Habits and a Weekend Away

April 16, 2017

For three of the past four Easters we’ve vacationed at a Provincial Park in the South west corner of the province. We go with two groups of friends and share a condo with one of them. There’s so many things to do here and so many adventures to be had: mountain biking, hiking, off-roading, catching minnows and insects in the creeks, walking around, etc. There are countless opportunities for active fun, and with my newfound energy I don’t want to miss out on any of them. 

But my body is fighting back. I’ve taken a bump of steroids before each excursion but I can’t really keep up. After my walk around the lake this morning in the freshly fallen snow I was panting and sweating profusely. I had taken an extra 10mg hydrocortisone before we started, about 10minutes into the walk I took another and I’m still not sure if it was enough. 

Everyone is telling me to rest but it’s driving me mad. Why do they feel like they can tell me what to do? And why, if they see that I’m struggling, do they not just ask what they can do to help? I don’t want to rest, I want to do! It makes me feel very isolated and misunderstood. What I could give up though, is doing the dishes, tidying up, or entertaining my son. Any of those chores could be done by others before I get to it, and then maybe I’d be okay. It’s partly my fault I know. I have a hard time relaxing in general, and it’s close to impossible for me to do it when there’s a mess around. 
I’m in another adjustment and acceptance period on the chronic illness timeline. If it was Addison’s all along, then I have to learn how to handle it all over again. I never really did try just pumping my body full of steroids so I could do whatever I wanted. I don’t know if it’s healthy or not, but I’m sick of missing out on things. That line of thinking is close to denial I know. 

Chronic illness is hard. Every stage of it is hard and you never get away. You can take a vacation from your job, family, city and responsibilities but you can never leave your defective body behind. 

Feeling Well?

April 13, 2017

I’ve been so well, uncharacteristically well, for almost 4 weeks! Every day I’ve gone for a walk, as well as kept up with the household chores and taking care of my son. I’ve done extra things like painting a dresser, de-owning more possessions, baking, meal prep, and social visits. I’ve done favours for friends and it’s made me feel so good to help loved ones. This is the best I’ve felt, continuously, in over 2 years. 

It must be the prednisone. 5 weeks ago I finally got around to testing it out instead of hydrocortisone. I’m on a fairly large dose for adrenal insufficiency, 12.5mg split into two daily doses, but it’s wonderful. I don’t feel like I’m constantly crashing. I wake up groggy and weak, but within an hour I feel ok, and it generally lasts for the rest of the day. My chest pain was almost non existent for a while, but as I feel better and increase my exercise, it creeps back in. Not nearly at the level it was before though. 

It’s definitely time to try working. The process is difficult though, and I feel like I can’t trust my manager because of his change in plans, and general unprofessional emails about it. I know I can do some office work, but am worried about what that looks like, and I don’t want to put myself in a position that will negatively affect my future. I’m most afraid of getting fired if I can’t do the job. If I go back with the proper supports and protocols in place that can’t happen, but if I forgoe those and do what my manager is suggesting, I’m afraid that’s a possibility. I believe his motives are pure and they just need me back because of increased workload, but I still have to protect myself. It’s unfortunate that it’s happening. It’s be nice if it was just easy and I could trust the system, but my priority is my and my families’ future. 
I see my endocrinologist in a week and a half. I plan to stay in the prednisone for at least the next 6 months to see how I feel. He may adjust it, but I’m okay with that. For now I’m just enjoying feeling this way. It’s been so long since my life wasn’t dominated by weakness and fatigue and in a way I feel reborn. 

April 4, 2017

I’ve felt good for almost three weeks now. I’ve felt normal, almost healthy even. I’ve been walking my son to school, I walked around the lake, I’ve done home projects and I’ve hardly napped. The house is clean, we’ve eaten well and the laundry is done. Some afternoons I’ve even been bored.

The Good Days

March 20, 2017

I often post about my bad days. It’s the way I let go of my negative feelings and come to terms with what I’m dealing with. It helps me work through my symptoms and decide what to concentrate on. When I write it down it lessens my need to talk about it, hopefully in turn diminishing the burden on my loved ones. When I write I can be honest and authentic about how tough things are. 

I also have good days, and I don’t record my feelings or musings on those days. I’m generally too busy. On my good days I make the most of them. I clean, cook (both for that day and for the days when I won’t be able to), I go outside and take in the fresh air, I play with my son, I meet friends for visits and mutual support, I shop for household goods, I make phone calls and pay bills. On my good days I’m a regular human being, functioning in society, even if I still need to lay down a few times throughout the day. 

Today was one such day. It’s the first day of Spring and the snow in the yard is beginning to melt and become one giant puddle. My 5 year old and I played in the water with his trucks, while also carving paths in the remaining snow for the water to drain. We met a friend of mine for breakfast and went grocery shopping. We filled the bird feeder. Once he was at school I tidied up the basement and primed the last teleport. With my extra energy I managed some self care and waxed my legs. 

It’s so wonderful when I get good days. My chest still hurts and my other symptoms don’t disappear completely, but they don’t rule my day. I can choose to ignore them. 
Every time I measured my heart rate today it was 80. On my bad days just doing the dishes or taking a shower raises it to 110-130. But I’ve been told I can’t have POTS because I have good days. When I asked about it the internalist said my symptoms would be bad everyday. It contradicts what I read from personal accounts online, but who am I to say? I don’t have a medical degree and personal anecdotes don’t carry any weight with doctors. 

On my good days I don’t think about these things though. The great thing about being busy is that there’s no time to dwell on the questions of what I have and what can be done about it. On my good days I simply live and be. I breathe and walk. I cook and eat. Good days are gifts that I open enthusiastically every time one is given to me. 

She’s Living My Life

March 18, 2017

Sometimes I feel morose and jealous when I see people around me living their lives the way I wanted to. I see their smiling faces on instagram and the breath taking places they’re exploring and the sense of loss overtakes me. I see their chubby babies, the children with their siblings, their business trips and nights out and I grieve for the life that was taken from me. 

My friends are living my life. In my despair I imagine a life that would be perfect if I was healthy, a lie I know, but one that’s so easy to grasp onto. Today that feeling is hard to shake. 

I had an absolutely abysmal day yesterday, that started the previous night. I had visited a good friend in the hospital who had just birthed an adorable and healthy baby girl, her third child in 4 years. She was glowing and an incredible energy to be around. I cuddled the sleeping infant and took in that delightful new baby smell. It was a wonderful visit and I was glad I could be there to take pictures of the happy family for their scrapbooks. 

It wore me out completely however. The walk to the ward seemed particularly long even with my cane. I had to rest for 20min before I trusted myself to hold the baby, even sitting down. The walk to and from my car left me panting and sweating. When I got home I made it to the couch and stayed there until it was time to cook supper, which I never did eat. I went to bed at 6pm, and consider myself unconscious until 10. I was aware of my husband touching my forehead, which started out feverish and ended up cold and clammy, but I was unable to open my eyes or change my position. Around 10 I got up, had a bowl of cereal and an Aleve and went back to bed. 

The next day was horrid. I didn’t even finish my coffee before I went back to bed. I was extremely weak, every time I stood up my chest pounded like it was trying to break free. My son didn’t have school so he was with me throughout the day as I drifted in and out of sleep, catering only to his most basic needs when I was able. I wanted to take him to daycare so he didn’t need to witness me in that state but it was impossible. I could hardly make it to the bathroom let alone outside. 

It wasn’t until late afternoon, after hours of fitful sleep, almost 2L of V8 juice (with added salt), Gatorade and water, that I started feeling human again. My son and I went outside, I sat on the sidewalk and he did experiments with the melting Spring snow and mud. When my husband asked him about his day he somehow only had good things to say about hanging out with Mom, watching TV and playing in bed. I’m so lucky to have that wonderful boy in my life.

Today’s a better day.