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.

How I found my new career, take two

I used to be a really good hula hooper. Seriously, I would win hula hoop contests. Still, I never envisioned making a career out of it. Instead, when I was in grade one I wanted to be a teacher.

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When I was in grade two I wanted to be an author, and then I honestly don’t know ‘what I wanted to be when I grew up’ for the rest of elementary school, but eventually I made up my mind. I wanted to go into occupational therapy (OT).

It turns out, though, that I’m a bit of a career chameleon because as you know last fall I decided my true calling in life was to be a lady in waiting. And as great as I look as a lady in waiting…

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…I’m now adding another new career to the list. Since my lady in waiting dress was very expensive (don’t even get me started on how much that tiara set me back!), I’m still going to do that gig part time, but I’m also adding in another part time job as a…drumroll please….

Hoop jumper! Professional hoop jumper that is, because amateur status just does not pay enough, and as I mentioned, that tiara really set me back. Plus professional status comes with health benefits.

So anyway, earlier this year I was doing the whole #oneword thing except that I was picking a new word each month instead of picking one for the whole year. After picking the word advocate for March, I decided it should be my main focus for the rest of the year. And in case you don’t know what it means to be an advocate I will save you from looking up the definition by telling you that an advocate is synonymous with a hoop jumper.

Alright, now in my post Have Wheels Will Travel I mentioned that I was jumping through a lot of hoops in trying to get my own wheelchair, but that it was a story for another day. Well, ladies and gentleman, that ‘another day’ has arrived. It’s really not a very exciting story, though, so here is a (very) simplified version.

The story starts with me waiting on hold for an hour (speaker phone and Tetris for the win), and then learning that in order to have a wheelchair covered under my health benefits I would be mailed special forms that needed to be filled out by my doctor and an OT. That conversation happened on May 27.

The story ends with me having an incredibly lovely and positive visit from an OT. That happened on July 20.

And what happened during those two months in between? Well, I made a lot of phone calls, weaved my way through a lot of automated phone menus and was sent on many wild goose telephone chases. I was told “I don’t know, try calling this number” at least a half dozen times, and whenever I finally thought I was getting somewhere, I would then be forgotten about for a week (or three). Basically, I have spent the last two months working very hard in both my job as a lady in waiting and my job as a hoop jumper. In fact, it’s during the last two months that I’ve moved up in the world of hoop jumping from an amateur to a professional.

The important thing is that earlier this week I had a really great appointment with an OT and a mobility and seating consultant who I will refer to as ‘my wheelchair guy’ from here on out. Unlike many of the people I encountered on my wild goose telephone chases, they both knew exactly what needed to be done and how to do it. The assessment is done, the paperwork is done, and as far as they know my wheelchair will be covered (I told you professional hoop jumping came with health benefits!). Now all I have to do is…you guessed it…wait. Best guess is about a three month wait.

Good thing my lady in waiting skills are top notch.

And after this whole process, my hoop jumping skills are pretty top notch as well. Hoop jumping is harder than it looks. It can be very confusing at times…

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…but it’s really rewarding when you find your way through!

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There is really fine line, especially when navigating a public healthcare system, between being an advocate for yourself and being an annoying and impatient patient. I’m still working on finding that balance and I almost always end up being overly patient, but I’m learning. I’m learning that it’s okay to ask for what I need. I’m learning that if I don’t follow-up then I may fall through the cracks. I’m learning that if I’m not persistent I’m the one that loses out and so I owe it to myself to keep at it. Health care workers have hundreds and thousands of patients’ health to worry about as part of their jobs but my job is just to worry about my own health. I’m learning that I don’t need to feel guilty that part of doing my own job is needing other people to do theirs.

Not all hoops are worth jumping through. You have to decide if whatever jumping through hoops will cost you, whether it be actual money or just time and energy, is worth the savings it will bring. I have to tell you, though, that if it comes down to wondering whether or not you yourself are worth jumping through hoops for, you are.

Trust me. After all, I am a pro.

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Oh and one more pro tip for you – if you have a feeding tube, hula hoop at your own risk!

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.