One with the trees

Here we are in a new year and so it’s time for a new One Word!

Last year I started by just picking my one word for one month at a time. Everything about my life felt very up in the air last January so I wasn’t ready to think ahead further than that. As it turned out, though, a few months into the year the word advocate came forward as my focus. While the word advocate can be applied in many different settings, I meant it in a health-centered way. And it worked out well for me! I made a lot of really important health-centered steps forward last year. I got a POTS diagnosis. I finally got my EDS diagnosis. I got a new family doctor. Those were the big ones, but there were a lot of small successes throughout the year, too.

I will never stop needing to be an advocate for myself. That said, I don’t need it to be my only focus right now. This year, I am going to be one with trees. Yup, that’s right, I’m dying my hair green and wearing a tree shaped car air freshener around my neck.

Not quite. I am going to be one with trees though, because my one word for 2016 is Branch.

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And now I am going to make my high school English teachers proud (Hi Miss Triveri!) by walking you through an extended metaphor.

When I got sick I was uprooted. I had been on steady ground, I had been thriving, and then it was as if someone pulled me out of the life I knew and tossed me aside. It didn’t matter how hard I had worked, how many connections I had made or how many goals I had set for myself, all of a sudden I found myself on unfamiliar and unfriendly terrain. I couldn’t thrive there. I lost all of my leaves, on the outside but on the inside, too.

I spent the next couple of years desperately attempting to find my way back to where I had been. I didn’t spend much time trying to figure out this new ground beneath me because why bother putting down roots when I was determined not to be there very long? My eyes remained on my old turf. I enviously watched all those other trees continue to thrive while I, from a distance, continued to shrivel away.

But then something changed. I took a look around me and realized that maybe I could find a way to grow right where I was. In a lot of ways this new terrain was less welcoming, but in some ways it was more forgiving. It wasn’t strictly better or worse, it was just different. It took a lot of hard work, but I was able to establish some roots. That’s what I was doing all last year while advocating for myself, I was putting down roots.

And now? Now I’m ready to branch. Now I’m ready to see how see how far I can reach right from where I am. I don’t know exactly what this will look like yet but I do know that I will be able to weave it into a lot of different areas of my life.

In terms of my health, my diagnoses are my roots. Now that I know what I’m dealing and now that the big things are being treated and managed, my new doctor and I can start to take a look at the little things, the better quality of life things. Now that I have a better understanding of what my limitations are, I’m learning how to be mindful of them instead of doing more harm than good by ignoring them. I’m working with my physiotherapist to improve my strength and stamina in a way that protects my zebra joints.

I also have roots in this blog. I started putting my words out there a little more last year which gave me the chance to connect and form friendships with a lot of really awesome people. I hope to branch out even more in my writing this year.

And perhaps one of the hardest things for me will be to branch out when things are not going well and reach out to other people when I need help. I have roots in the form of incredible people in my life, family and friends who never stop letting me know I am loved, but I tend to hide away when things are tough and wait until I feel in control again before letting them in. I’m going to try to let them see me and support me even when I’m losing leaves.IMG_0971

I’m going to be one with the trees. I’m ready now to figure out how to thrive within this new terrain, not against it. There will still be times when I lose my leaves faster than I can grow new ones and there will still be times when I feel left behind by all the other trees, but I hope to surprise myself by how much I am able to grow.

I’m going to make like a tree and leave now. You’re probably groaning, I’m sorry, but what can I say I’m a sap when it comes to puns. Don’t worry though, I can’t think of any more. I guess I’m stumped.

Okay. NOW I’m done.

Everyday advocates

March was all about the word ‘advocate’ for me. I took matters into my own hands and got myself a cardiologist appointment…

Let me just interrupt that train of thought for a second. If you are curious about how that cardiologist appointment went click here or go to the top of this page and click on the ‘connect with me’ tab.

Okay so my one word for March was advocate…

Sorry, another interruption. Just in case anyone is wondering what my one word for April is I’m not going to write a post about it because I have nothing interesting to say. My word is sleep simply because I haven’t been sleeping very well lately, mostly due to symptoms, and I’m trying to change that.

Okay. Once again, my one word for March was advocate! As such, I’ve been thinking a lot over the past month about what it means to be an advocate and I’ve come to the conclusion that being an advocate is a lot more relevant to everyday life than it may sound. It’s kind of a heavy word. On one end of the spectrum, when I picture an advocate I think of someone protesting at parliament or arguing on someone’s behalf with lots of yelling and threatening hand gestures.

Then on the other end of the spectrum I see all of us regular people going through our regular days and making regular decisions. A lot of times, though, those regular decisions have a positive impact on our life or someone else’s life and it’s then that we become advocates.

I worked hard to get myself in to see a cardiologist in March, but that’s not the only time that I advocated for myself. One day I decided that I would run my feeding tube every day for the next week. I can tell you that I felt miserable that week and that every day was a little bit worse than the one before.  I was counting down the minutes until I could take my next dose of anti-nausea medication and I was up until the wee hours of the morning with nausea that wouldn’t settle down even hours after I unhooked my feeds. But despite all of that, each day I would try again.

Why? Because I was advocating for myself. It sounds counterintuitive, I know. How does making myself feel miserable have a positive impact on my life? But it’s not just about the here and now. When I chose to try and run my tube feeds I was advocating for my future. In the long run, tube feeds are a much safer and healthier option than TPN, so I was trying to do what was best for me overall. Besides, if I never tried how would I know if things had gotten better?

After five or six days I gave up, and by giving up I was also advocating for myself. Instead of advocating for the possibility of a healthier future, I was advocating for a better quality of life in the present. I owed it to myself to try running my feeding tube, but I also owed it to myself to stop when the misery became too much to handle.

The thing about being an everyday advocate is that it’s not always straightforward and it’s not always consistent. Being an everyday advocate is about looking at the bigger picture and considering multiple factors, factors that change in importance over time. Sometimes ‘what’s best’ can change even moment to moment.

I am an advocate for myself when I choose to eat something and let myself enjoy the simple pleasures in life even though I know it will likely make me sick later, just as I am an advocate when I choose not to eat something knowing it will avoid triggering my symptoms. I am an advocate when I choose to socialize with my family and friends knowing that all the talking and laughter is going to make me happy but leave me with a pounding headache, nausea and dizziness, just as I am an advocate when I choose to miss out on the fun knowing that I will be in better shape to do what I need to do later. Fun now, pay later? Or discipline now, easier time later?

Like I said, it’s not straightforward. Neither decision is the ‘right’ one, as it depends on other circumstances at the time. And both options have their downside. Every decision we make has negative outcomes so it kind of seems like we can never win.

But here’s the cool part: every decision we make has positive outcomes, too. We have so much power to put so much good into the world. We have the ability to advocate for ourselves and for those around us every single day. We have the chance to make our own lives and the lives of those around us better. Every single day.

I know it sounds obvious…duh, of course our decisions affect our lives…but I guess I lost sight of how much control I actually have. For someone living with an illness where it feels like I have no control whatsoever, that’s a pretty powerful reminder. I can’t control my illness, but I can be an advocate for a quality of life despite it. Every day I get to be that advocate. And it’s not just me, it’s all of us. As hard as we may try, there are so many things in life that we cannot control, but every day we get to choose to try again, to start anew, to reach out and to carry on anyway. Each of those choices is a chance to be an advocate.

It’s a big responsibility, but it’s also a big opportunity, and I’ve also been a glass half full kind of girl.

Opportunity it is, then.

Pity parties, boxing gloves and being an advocate

Remember in January when I saw the geneticist and I was frustrated with more waiting but hopeful because I was finally getting somewhere? She was going to refer me to a cardiologist specializing in the autonomic nervous system to control my autonomic issues and order the tests she needed before making a decision about an Ehlers-Danlos diagnosis.

Frustration aside, I felt like I was finally going to be able to take a break. My case was in her hands now; she was going to take over and things were going to happen!

Four weeks later I hadn’t heard anything and my family doctor still didn’t have a report from my genetics appointment. There is a very fine line between being that annoying, bothersome patient, and being the overly-patient patient who in reality is falling through the cracks. I like to stay on the overly patient side of that line because I don’t want to be a bother but I decided to send an email to the genetic counsellor to see if the referrals had at least been made.

They hadn’t. The doctor they had in mind had retired and now they didn’t know where to send me. There was a pediatric autonomic specialist, and an adult autonomic specialist out of province, but no one local. I was crushed. Devastated. After years of trying to get someone to recognize that my problems were not all nutrition related I finally felt like I was almost there so when it turned out that after four weeks of patiently waiting I wasn’t any closer to answers, I felt hopeless.

I had myself a pity party for the rest of the day. Pity mixed with anger. I put my boxing gloves on and I was ready to pick a fight. Why was it impossible for me to get anywhere? Why was I having to work so hard? I was tired of being in charge and I just wanted someone else to take over.

It was a really good pity party. There were party hats and goodie bags, and even pin the tail on the donkey! Of course what I really mean is that there was me lying on the kitchen floor with my giant stuffed moose feeling really sorry for myself while my family cautiously stepped over me. The party did however take a turn for the better when my brother came home and cheered me up by watching Valentine’s Day with me. And of course there was crocheting, because no party is complete without a little crochet.

The next day I bounced back. So what if I didn’t want to be in charge anymore? I was in charge. I am in charge. And I mean it’s my body and my health; I guess I should be in charge. I contacted some other local patients with the same illnesses as me and I got the name of a local doctor who could hopefully help. No, it wasn’t an autonomic specialist, but it was a start. And then I gave that name to the geneticist.

When a week later I hadn’t heard anything back I made an appointment with my family doctor for March 3. March – new month, new word.

Advocate.

In February it became clear to me that I will always be my best advocate. It goes hand in hand with trusting my gut; I know my body best and so I can advocate for myself best. No matter how tired of being in charge I may be, that will always be my responsibility, my job. And right now it’s my most important job.

So I went to that appointment on March 3 with my boxing gloves on and my mouth guard in because I was prepared to fight! While I don’t own boxing gloves or a mouth guard, I was ready to fight…I mean advocate. It was now March, after all. I brought trends in vitals, a list of symptoms and the name of the doctor I wanted to see. It turned out that my doctor knows the cardiologist I had heard about, thinks highly of him, and she happily referred me to see him.

I was expecting to wait weeks to hear about an appointment date and for that appointment to be scheduled sometime in the summer, maybe even the fall. You can imagine, then, how ecstatic I was when I got a call within a week and an appointment for March 31! I was so excited that I cried. I’m serious, there were tears of joy.

March 31! That’s next week!

How appropriate that my appointment falls in March when my focus is on being an advocate for myself. And you can bet that I’m prepared to advocate for myself at my appointment next week, too. In fact, I have charts. Yup, I’m that patient. Call me crazy, but knowing what is going on in my body makes me a better patient and allows me to figure out what I need and advocate for it. Plus I’m an over-achieving science geek and I love charts and figures.

Okay now what is the point of this very long story? For one, my ‘one word’ for March is advocate…the verb and the noun! My other point is that we can’t expect other people to make things happen for us. Every situation is different of course, and I’m not suggesting we be disrespectful and rude in order to make things happen, but we also owe it to ourselves not to become victims if there is something we can do to change the situation. It’s okay to ask for what we need. We might not get it, but at least we’ll know we tried and there is peace in that knowledge.

We are in charge of ourselves, and as frustrating or tiring as that is at times, it’s also empowering.

So boxing gloves down and chin up.

Advocate.

P.S. I really do have a giant stuffed moose. See?

P.P.S. I also have some crazy hair, I know.

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