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.

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.

Exercise

March 13, 2017

The basement was cold and dark, but I was determined. My morning had been hard but possible. My son and I made the bird feeder that he’d been asking to make for 3 weeks. We still had some deer fat from the fall so we melted it down, added seeds and stuffed it into a mesh bag. We made a big production out of going outside to choose the best spot to hang it, so the birds could find it and have easy access. We also wanted it to be somewhere we could see from inside of the house. 

Then there was all the cleanup, and since my 5 year old had been so involved in the stirring, there was deer fat and bird seed all over the kitchen. It was tiring, but I had promised. Each morning I try to do something fun with him, something that doesn’t involve screens or mass produced toys. If I was healthy I’d be taking him hiking, on nature walks, to the park, or at least somewhere out of the city. The way it is though I have to figure out activities that I can do, games that won’t make me feel like passing out. The bird feeder was a great craft for today, as tiring as it was. 

When I came back from dropping him off at school I watched a movie. It was about a woman who had been coerced by catholic nuns into giving up her son for adoption, and 50 years later she tries to find him. When it was over I gathered my resolve and went to the basement, put on my running shoes and got on the treadmill. 

I was determined to do 20min at a speed of 2mph. Winter is coming to a close and I want to feel safe walking my boy to school again. It was hard. My heart rate kept rising and my chest hurt. I tried to think of what it was like before, when I could just walk without thinking of it. In college I walked everywhere. I didn’t have a choice really, we didn’t have access to a car and the bus system was ridiculous. Walking was second nature and I never gave it a thought. When I moved to this city I walked to work everyday. It was a nice way to start my morning and I always got to work energized and in a good mood. Today on the treadmill, after 20min, I was weak and shaky. My heart rate was up to 145 and the pain was intense. As soon as I hit 20min I went upstairs, holding on to the railing in case I became too dizzy and fell down. I climbed into bed, congratulating myself for accomplishing what I set out to do, promising myself I’d do it the next day also, and slept until my husband got home.

The chest pain lasted the rest of the night. As soon as I finished cooking and eating dinner I went straight back to bed and lay down with my feet in the air, hoping for a bit of relief. 
Then I got this text. 

It hurt. I try so hard and no one understands. Every time I get out of bed I’m trying. By trial and error I’ve found out what I can and cannot do, what’s worth pushing myself for and what’s not. I’m the only one that has to live with the consequences of any exercise I do, and I’m the only one that knows how much it hurts. 

I know I’m weak. I know I’m fat. I know I’m deconditioned. I don’t need anyone else pointing it out to me. When you’re chronically ill people treat you like a child and feel entitled to tell you what to do, whether it be exercise, diet or medication. People stop framing ideas as suggestions or questions and instead give them to you as demands. Solutions that if you don’t try then you’re to blame for your situation. People can talk between themselves and make plans for you without consultation. It stems from a place of love and kindness, but overwhelming misunderstanding of what you really need, which is unconditional support and trust that you are doing what’s best. 

My Rock

March 6, 2017

I remember the first time Dr. P gave me a hug. I had been his patient for just over 2 years, and had seen him mainly to get refills for my thyroid medicine, for ongoing issues after childbirth, and a few sinus infections. That day through I was really, really sick. It was the start of the year that I would be continually ill, catching everything that went around, and then developing a sinus infection on top of it. My immune system was nonexistent that year, and it only started to get better once I was diagnosed with Addison’s disease. 

Dr P had finished examining me for my main complaints, throat and sinus, when I mentioned that I couldn’t hear out of one of my ears. A quick check and He informed me that I had a sinus infection, strep throat, and ear infections in both of my ears. The relief I feel was likely palpable. I was happy to have my suffering validated. I wasn’t a wimp, I couldn’t have pushed through it. I was truly, legitimately sick and exhausted. He wrote me a prescription for strong antibiotics with instructions to go back in three days if I wasn’t feeling better. 

Then he smiled at me, a beautiful sympathetic smile with no hint of condescension. He put his arms around me and hugged gently, just long enough for me to feel his warmth and kindness. I felt supported and somehow stronger and better. This is how I feel every time I leave his office. 

Today I went in to ask for changes to the referral he made for me to a rheumatologist, now that the gynaecologist said I have a connective tissue disorder, possibly ehlros Danlos syndrome (EDS). I had made some phone calls and learned that the wait for the rheumatologist in my city was 2-3 years, but one 2 1/2 hours away was 1-3 months. I finished explaining what I wanted and he pulled out his cell phone, called the local rheumatologists office and made my case for me. He called me a “lovely girl”, with multiple health issues. 

My 2-3 year wait is now reduced to 3 months. 

I hugged him before I left and told him what I’ve told him many times before: he’s my rock, and he’ll never know what he does for me. I can never thank him enough. 

Not Okay

March 1, 2017

I thought I was alright with the pelvic organ prolapse but I’m not. I’m upset. I’m grieving the baby girl I’ll never have. I’m afraid for my sons health. I can’t stop thinking about the fact that he had a pneumothorax at birth, or his two broken bones. I’m tired of fighting for health. 

I’m tired in general. 

My chest hurts today. I did too much yesterday. I walked too much, wandering around a store with no intentions of buying anything. I did another round of purging my possessions, getting more ruthless still. I want nothing. I want nothing to tie me down. I want cleaning to be simple, and to have minimal daily decisions. 

I want simplicity. I want an easy life. 

I feel alone and depressed. 

In And Out

February 27, 2017

So there we have it: my bladder and uterus have prolapsed. I saw the gynaecologist this morning and it was a wonderfully easy appointment. I said what I suspected was wrong, he did an exam and confirmed it, then fitted me with a pessary to be used until I decide to have a hysterectomy. Done. Problem identified, addressed and fixed in one appointment, that doesn’t happen to me often.

I gained other information too. Taking into account my age, the number of children I’ve birthed (1) and his birthweight (7lbs 10oz), I shouldn’t have a prolapse. Dr. M believes I have a connective tissue disorder and we discussed Ehlors Danlos Syndrome, which I’ve wondered about in the past. Dr M stated that he doesn’t diagnose that condition, but recommended I see a rheumatologist. I’ve already been referred to one and am, as seems to be the theme of my life, waiting for the appointment. It feels great to have concrete proof of something going on. There can be no doubt that the prolapse is “in my head”. My organs are literally in my vagina. How’s that for evidence?

This appointment was refreshingly lighthearted, and I was in a good mood. Other than the actual exam, which no woman likes to have, it was fine. I even made the receptionist tear up with laughter. When I went to pay for the pessary, which had already been fitted and installed, I pulled out my credit card only to be told they only accept cash or cheque. I looked her in the eye, smiled and said “Do ya want it back?”

Blast From the (Medical) Past

February 14, 2017

I bought a new coat today. My weight is steady, but still much higher than I’m comfortable with. The only warm coat that fits is a colour that doesn’t look good on me and clashes with all my hats and mitts. The North Face store is having a big sale and, sick of feeling unconfident when I walk out of the house, I decided to take advantage of it. I found a great 2 in one jacket, in a colour I like and that flatters me, for 50% off. Unfortunately I brought my purse but neglected to bring my wallet, so I had to go twice. 

The second time I went back I recognised a fellow shopper as a doctor, but couldn’t place him in my past. He was tall, had a dark brown complexion and a mop of greyish black straight hair. He was shopping with his wife and two children a couple years older than my son. His height struck me as his defining feature, but I couldn’t recall if I knew it in relation to myself standing, walking, laying down, or in a wheelchair. 

It took a few minutes, but in the end I remembered him: Dr M, the internalist that diagnosed me with Addison’s Disease 4 years ago. I went up to him, reached out my hand and introduced myself as such. I didn’t know what I intended to say to him, but it all came naturally. I told him that I’ve had other health problems and nothing has been diagnosed as quickly as he diagnosed me. I said I appreciated how well he listened to me and, from the stories I’ve heard from other Addisonians, I was very fortunate to get such a quick diagnosis. He smiled and, from his remark about sending me to ER, I knew he remembered me. 

He asked how I’ve been, twice, and I said that I’ve had other health issues that aren’t being figured out nearly as easily, but I didn’t really go into it. It wouldn’t have been appropriate and I doubt it would have done me any good anyway. He shook my hand again and we parted. His wife’s face beamed with pride and I felt good for having given credit where credit was due. 

Hospital Times Two

February 6, 2017

I didn’t even get a chance to write about one ER visit before I was back for another. I took myself in today. For 4 days I had diahrea and was feeling worse and worse. It was at the point where I didn’t know if gastrointestinal symptoms were causing Addison’s symptoms, or if Addison’s was causing gastrointestinal symptoms. The days leading up to this I felt so alone and not understood. Each extra pill I took I felt like my husband was condemning me for it, even though I knew I needed it. As I got more sick and confused it hurt emotionally more and more. He’s supposed to be my advocate yet won’t learn anything. I’m afraid he won’t be there to save me when I need it. 


So this morning, when I woke up and voided every bit of fluid and the little food I ate the night before, I knew I had to be the one in control. I had to make the decision to go in before I lost my resolve, became confused, and just went back to bed. It was the first time I’ve gone alone to the hospital. Part of me didn’t like it, but another part of me didn’t care. This illness is my lot in life, and why shouldn’t I carry it alone sometimes? We as a family still had stuff to do that day: getting the basement ready for my cousins visit, my son had a birthday party to go to, general housekeeping and chores. Why should none of that happen just because my body is defective?

So I took myself, and I spoke for myself, and I managed by myself. Going was the right thing to do. I was so dehydrated that they couldn’t get a vein, and didn’t even bother trying the regular spots. For the bloodwork she even went in the top of my hand. Each spot they tried is now replaced with a purple bruise. One is even a centimetre away from the one still healing from my fall down the stairs after my experience at the dentist, which I never did write about and now probably won’t. 

The abridged version is that while trying to yell to my dad in the basement I fell down the stairs and dislocated my shoulder. I’m not sure if I fell because I got weak and my legs or ankles buckled or if I passed out for a second. It was more painful than anything else I’ve ever experienced. I had pain medication while in the hospital but passed down the prescription for home for fear of being labeled a pill seeker.


It’s been a rough few weeks. 

I’m so worried about what my son is absorbing throughout all of this. Two days ago he was sick too, with a sore throat, and I couldn’t be the mother I wanted to be. I wanted to tuck him into a freshly made up bed on the couch, and bring him tea sweetened with honey. I wanted to read him books and stroke his hair. I wanted to massage his body and bring him popsicles. But I could only do any of that in 5 or 10 minute spurts. The rest of the time I lay in bed sleeping. During one long nap he wrote me a beautiful note and made me a present. He wrapped it up and hid it, then made me a treasure map so I could find it. I was so touched. He always finds something to do when Mom is sleeping. 

I’m crying now. Illness keeps robbing me of myself. 

When a Cavity Can Be Lethal

January 19, 2017

Yesterday I had a cavity filled. I was nervous about it, since it was my very first cavity in my 34 years on his planet. I read up on filling cavities and Addison’s disease considerations. I decided to take an extra 5mg of hydrocortisone, and told my husband my plan. I thought I had things under control. 

The dentist froze me and left to let the freezing set. I stared to feel strange: confused, dizzy, nauseous. My heart started beating quickly and I stared trembling. I was going to have a seizure, I could feel it. I concentrated on breathing slowly. In and out, just stay calm and wait for someone to get to me. Breathe, don’t give in to what your muscles want to do. Breath. In and out. Plan. What will you do when they come in. Ambulance? Breathe. Slowly. Don’t give in. Don’t get scared. In and out. In and out. 

The hygienist and dentist came back. I tried to explain. “Something’s wrong” I said. That’s what I always say when I need help. I can’t articulate what the problem is exactly, but something is wrong. “I need my pills”. I tapped my Fitbit and showed them my heart rate – 140bpm. Something’s wrong. They got my pills and I took one, they gave me oxygen. My heart rate went down and my muscles started listening. “Call my husband”. Down to 120bpm. I took another pill. At that point it seemed better than going to the hospital and getting 100mg solu-cortef in an iv. Heart rate down more, getting coherent. Kept the oxygen on, to be honest, I absolutely love getting oxygen. It makes everything seem so much easier. Each breath feels like the equivalent of 10 regular breaths. I’ll take oxygen anytime it’s offered. 


By the time my husband got there I was okay. His reaction really disappointed me though. He didn’t say much, but I felt like he blamed my nerves. I felt like what happened was my fault. I felt like he failed me as an advocate. I said I wanted to take another pill and he said I shouldn’t. I felt like a wimp. 

Since I was stabilized and was already frozen and had already used up so much time, I asked them to carry on with the filling. He drove me home afterwards and I felt like a failure. 

Later that morning I learned that epinephrine in dental freezing can lead to Addison’s Crisis. I had once again come dangerously close to crisis and came out on top.

That afternoon I became suddenly weak and fell down the entire flight of stairs to my basement, dislocating my shoulder in the process. But that story, and that crisis averted, is for another day. 

Putting It Off

´┐╝January 9, 2017

It’s been happening for over 2 years now. The feeling that my insides were falling out. I told one doctor in ER, back in February 2015, when I lost consciousness. Since then, and because of all I’ve been through with doctors and specialists, I’ve been too scared to bring it up in any appointment. I’ve prioritised my symptoms based on what limits my life the most, and just a bad “feeling” didn’t rate in the slightest. It got worse and worse though, as time marched on. It became harder and harder to use my menstrual cup, and having to shift things around up there made me almost throw up. 

A few weeks ago I finally got the courage to hold up a mirror and have a good look. I don’t have much experience looking at vaginas, but I was 90% sure that what I was looking at wasn’t what it used to look like. For all the naked women on the internet, there is precious little information or pictures of what a woman’s private area is supposed to look like, so I had to let someone in on my secret. 

My best friend got a text one day that read “I need you to do me a favour, and it involves your vagina and a mirror.” All women deserve to have a friend they can open up to completely. She (and her sister) confirmed what I had suspected: I likely have a prolapsed uterus and need to get it checked out. 


I had the appointment this morning with Dr. P. He didn’t do an exam, just took me on my word when I said that I believed I had a prolapsed uterus and sent in a referral to a gynaecologist. I left saying “what a pain in the ass” to which he agreed. Dr. P has always been a bit uncomfortable with women specific issues and it certainly was no different today. The perfect word to describe how I felt about the appointment was dread. I’ve had so many appointments and seen so many doctors, but I was dreading this one the most. I pictured Dr. P giving me crap for not getting it checked sooner. I didn’t want to start the process of dealing with it. I don’t know how it will affect my fertility. I didn’t want Dr. P to do the exam, at this point he’s such a big part of my life it would be like having my boss inspect my vagina. 

As much as I was dreading it, I do wish he had done an exam. It’s hard to explain, but even though I can see an internal organ when I look in my vagina I still wanted his validation. I can’t prove any of my other symptoms and I want nothing more than to be able to. This is another side effect of being undiagnosed: you learn to stop trusting yourself. 

So there we have it, another medical issue to be addressed. I’m not sure when the referral will go through but Dr. P told me I can start calling the office after 2 weeks. I do plan on picking the gynaecologists brain and asking about conditions that can cause a prolapsed uterus, since I’m relatively young and have only had one child. It’s possible it’s all connected and perhaps this will be just another piece of the puzzle that is my life.