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.

Dear new doctor…actually scratch that formal dear business

You can read an updated, more universal version of this piece over at The Mighty.

I read this article written from a doctor’s perspective earlier this week and while none of it was a surprise to read, it really resonated with me. Since having recently learned that my family doctor of 23 years is retiring at the end of this year (with no one to replace her…eek!), I’ve been thinking a lot about the whole dynamic between doctors and chronic illness patients. So, of course, I put those thoughts into words.

Dear new doctor,

…Actually scratch that formal “dear” business. I tend to use a more familiar greeting when writing letters to anyone who is privy to the inner workings of my intestines and my ovaries…because of course I write a lot of letters to people about those very topics and thus have determined that a more familiar greeting is appropriate…

You don’t know me yet, so let me just clarify that I’m kidding. I don’t actually write letters to people about such things.

So anyway!

Hi new family doctor!

I am sincerely pleased to meet you. Even though I’ve seen a lot of doctors before you, I’m excited by the possibility that you might have ideas and options for me that no one has ever mentioned.

I’ve got to say, though, I’m also rather apprehensive.

You’ve probably noticed by now that my chart is fairly…uh…lengthy…and you might be wondering what you are getting yourself into by accepting me as your patient. I’m not the kind of patient that can be easily fixed and I know that can be really disheartening and frustrating. I get disheartened and frustrated, too. Look at that! We have something in common!

Here’s what I want you to know about being my doctor.

I don’t expect you to already know much about my illnesses, and actually it’s very possible that right now I know more about them than you do. Please be okay with that. Consult the internet or talk to other doctors to learn more if you want, but when it comes to understanding how my illnesses affect my life, talk to me. And even if you are already familiar with managing these conditions, don’t forget that my body didn’t read the textbook chapter on “how to have gastroparesis, POTS and EDS” before it decided to get sick so it might not follow all the rules.

Keep in mind that the 10 minutes in which you see me is just a snapshot of my life. You might see me at my best or you might see me at my worst, but most of the time you’ll probably see me somewhere in between. Please don’t make assumptions about how I am doing based on whatever snapshot you happen to capture that day. Just as my frown does not imply the presence of depression or defeat, my smile does not imply the absence of worry or pain. I smile a lot. I laugh a lot. But I still understand my reality, and I need you to understand it, too.

You might be scared of me because I have a chronic illness, but you should know I’m scared of you for the same reason, because I have a chronic illness. I’m scared you won’t trust my instincts and will treat my concerns as overreactions. I’m scared you might confuse not being able to fix me with not being able to help me at all and then give up. I’m scared you will think I’m lazy or just not trying hard enough. You see, I can be as well-informed, empowered and proactive as I want, but I have no power. I can’t prescribe meds, order tests or make referrals. I need you for that. I have the day-to-day-living-in-this-body experience thing going for me, while you have the foundation and education, and you have the years of experience treating other patients. I know that you can see things I can’t because you are not living it day to day, and I respect that. I hope you will try to see things through my eyes, too.

I know that you are human and I promise not to hold that against you. I know you make mistakes and I’m okay with that. Sometimes I’ll catch your oversight, but that doesn’t mean you aren’t doing your job as my doctor, it just means that I’m doing my job as a well-informed patient. I know you won’t always have the answers and I’m okay with that, too. I don’t expect you to know everything, but please be honest with me about it instead of giving me a confusing and round-about answer. I also know that you won’t always be able to help me. Sometimes at the end of an appointment you will feel helpless. That’s okay. The next appointment will be better.

But I’m human, too, and sometimes I get defeated. Because I know that things could be worse, sometimes I forget that I’m allowed to wish things were better. And sometimes I stop fighting for them to be better. I lose hope. I need you to fight for me when that happens. Remind me what determination and perseverance look like.

Please know that I will always appreciate you giving your time to help me. I know it’s your job, but I’m grateful all the same. I see a lot of doctors, but I know that you are the one with the most comprehensive view. You are the one looking at the big picture and you are the one keeping me from falling through the cracks. I know there will be lots of trial and error, confusion, and paperwork…and I’m really sorry about the paperwork…but there will also be successes and milestones. And joy. No matter what is happening, no matter how sick or healthy I am, I promise you there will still be joy.

That doesn’t sound so bad, right?

Oh, and just in case it helps, I also come with a free supply of dishcloths, hats and scarves.

Have wheels will travel

Sometimes I use a wheelchair. See?

Have wheels will travel

I’m just kidding. Well, I’m just kidding about the motorcycle. Sometimes I really do use a wheelchair. And sometimes I make my mom haul that wheelchair on to the back deck for a photo opportunity. See?

Have wheels will travel...for real

I have dysautonomia and because of this, oftentimes I cannot stand up or walk around for very long without an inappropriately fast heart rate, an abnormal blood pressure and a whole host of very unpleasant symptoms.

If you’re confused or curious and want to know a little bit more about dysautonomia then I wrote this appendix/addendum/supplement/whatever for you. And if you’re satisfied with that brief description, great. Carry on reading.

One of the challenges of dysautonomia is that I never know when this barrage of unpleasant symptoms is going to hit me. I might think I’m okay but then a few minutes later find myself in quite the pickle…like the time I was trying to buy yarn and ended up having to leave the store empty-handed because I couldn’t stand in line and then I had to hang out in my car with my feet up on the dashboard for a while until I felt steady enough to drive home…or the time I had to crouch down to the floor of the library and pretended to be really enthralled by the books on the bottom shelf so that people wouldn’t think I was awkwardly waiting to start a game of leap frog.

As you can probably imagine, this can make going out in the real world and doing normal things like standing and walking very difficult.

So, sometimes I use a wheelchair.

After I was discharged from the hospital in November, except for going to appointments I really didn’t leave the house. I couldn’t leave the house. By March it was clear that things weren’t going to magically get better right away so I asked my family doctor to write me a referral to borrow a wheelchair from the Red Cross.

Honestly, I think this whole wheelchair thing has been harder for other people in my life to accept than it has been for me. Thinking about me in a wheelchair has made some people feel really sad and sorry for me. Other people, understandably so, have been caught very off guard when they’ve run into me using it.

But the thing is, I don’t feel sad about it and I don’t feel sorry for myself. It was actually an easier transition to make than you might think. I read an article once on the subject of how do you know when it’s time for a mobility aid? It stated that if you’re even considering using one there’s a good chance it’s already time and that seemed very logical and practical to me. As well, one of my closest friends is in a very similar health situation and she has been using a wheelchair for a while now. It’s allowed her to go out with her family and friends and to even travel a little. She really led the way for me. I saw what it did for her and I saw how gracefully she accepted it and used it to push past limitations instead of letting it become a limitation.

I wanted that. I wanted to be the one in control. I wanted to have some freedom despite my symptoms, not be limited because of them.

So I decided to give it a go. I haven’t used the wheelchair that much yet because it’s an old clunker that weighs about a thousand pounds and I’m not able to lift it in and out of the car by myself. Plus even if I could lift it, I still wouldn’t want to go anywhere on my own because the brakes don’t really work, the wheels have next to no grip and it’s not the right size for me so it’s a bit awkward to maneuver myself. But still, borrowing it was such a great decision! Ironic as it may sound, using a wheelchair has given me some freedom. Now that I know what a positive change it can make in my life, I am starting to jump through all the hoops required in order to get my own (SO many hoops…a story for another day) so that when I have to return this one in a few months I will still have that freedom. Hopefully I will have some independence, too.

I realize it might look like a step backwards, but I don’t see it that way. In the bigger picture it’s a step forward, an opportunity. It’s a good thing. So please, don’t feel sorry for me. There is no need for that. Celebrate with me instead! Be happy that I am finding ways to make this life work for me. There are a lot of things I didn’t think I could do anymore when really I just couldn’t do them on foot. As it turns out, though, there is more than one way to get around.

So to anyone else who is feeling stuck, maybe it’s time to try a different mode of transportation. Find some wheels and come roll with me. If you’re feeling trapped by circumstances beyond your control, if you’re feeling like you just can’t keep up with the world around you, or if you feel like you’re straight up headed in the wrong direction, come roll with me. Grab your wheelchair, bicycle, IV pole or rollerblades. Skateboards, wagons and golf carts are welcome as well. And if you’re really cool maybe you can find one of those soap box derby cars. Any metaphorical wheels will do!

Maybe we can’t take the path we planned on, but we will find another route. And wherever we need to end up, we will get there.

What’s that saying? Have wheels will travel?

Alright then. Let’s roll.