Life, reality and fairy dust

I get a fair amount of emails and messages from people wondering what my secret is, where I buy my fairy dust. They want to know how I manage to be bright and cheery when things in my life are on the stormy side.

Ha!

You want to know how I always stay so positive?

I don’t.

You guys, there is a reason I haven’t written a new post in almost a month now, and it’s not because I’ve been off gallivanting. It’s because I’ve been in a bad mood for pretty much three weeks straight. It’s because I’ve had nothing to write beyond “I’m really bummed out and everything sucks” and I know I can keep it real here, but I like to think I’ve set a higher standard on this page than a seven word post.

I’ve just been frustrated lately. Discouraged. Defeated. And did I mention frustrated?

It started when I found out that I’m looking at a 12 to 16 month wait for a follow up appointment that was supposed to happen last fall, plus another referral that was supposed to be put through in December never actually went through. Next I learned my extended health won’t cover something because I have Ehlers-Danlos Syndrome and not arthritis. After that the government deducted from my disability payment for no clear reason. Then my car died beyond repair. There is also the issue of my most expensive medication no longer being covered and even after four hours on the phone and six retellings of the whole situation, it’s still up in the air.

Plus of course there are some new symptoms, some worsening of other symptoms and some more baffled looks from my doctors.

And I’m really struggling lately not to feel angry and let down by the healthcare system here. I hate when I feel like this because I really do believe in the idea of universal healthcare, but it’s hard when people in other countries, and actually even in other provinces across this country, don’t seem to have to fight as much and wait as long as you do. It’s even harder when they have access to services and treatments that are unavailable to you altogether.

Life has just been a little too much lately and I haven’t had the energy for anything extra so I’ve kind of been hiding out.

It’s called turtle time. At least it is now. Patent pending.

And there’s my negative story for you.

Here’s where it starts to turn around.

Before I continue, you should probably know that I have this random interest in random holidays. It’s not uncommon for me to text someone along the lines of, “Happy Day After New Year’s Day (observed – New Zealand)!” or, “FYI it’s Showa Day in Japan today.” I love learning what all these different days are about and how they came to be.

A while back I was texting with my bestie about upcoming Earth Day, except that Earth Day was auto-corrected to warty day. Kind of gross, sure, but we thought this was hilarious and so then of course we said we will have to recognize warty day, too. When Holly asked me when it should be I randomly yet officially picked May 5. I later realized this was already Cinco de Mayo (duh) and less obviously also Children’s Day in Japan, but official is official.

By the way guys, we know we’re really weird. Just go with it.

Yesterday morning, I texted Holly to wish her a Happy Warty Day, which of course is not a significant day at all except for the fact that it made us laugh. I asked her what her plans were and if we could celebrate. Thursday is often her only day off all week, and the only reason she never works on Thursday is because she volunteers overnight at the crisis line, so when she told me she also had an appointment yesterday afternoon but could pop over after, I almost said no.

All of my “don’t be a hassle on anyone” chronic illness instincts told me to just say never mind, but my “I’m having a tough time” human instincts told me that I really just needed my best friend to make things better. Remembering that my focus on the word branch this year includes reaching out even when I feel like hiding, I said yes.

IMG_4860So Holly drove over to my house, and since we both adore baby geese, we popped Julio (my wheelchair) into her 1998 minivan (just to give you an idea of how cool we really are), and we drove to a nearby park to see the goslings. The scenery, weather and company were perfect. Plus the goslings were fluffy, clumsy and adorable. It was the most wonderful Warty Day there ever was. It was also the only Warty Day there ever was, but still.

I don’t have a magic answer for how to stay positive, but this story is the closest thing I have to some fairy dust for you right now.

I am most certainly not full of sunshine all the time, not even close. Honestly, I don’t even think that’s healthy, let alone possible. It’s not real, and forcing it gets in the way of genuinely living it. I think you have to feel it all, the good and the bad, and I think that hope is found in spite of the bad, not by pretending it doesn’t exist.

IMG_4858The bad exists. I know because I live through it and so do you. Everyone does. We have no say in that. But I think maybe we’re able to live through it because of what we live for, and that we have some say in.

I live for random made up holidays that come into being because of texting typos, no matter how dermatologically unappealing their names are. I live for gushing over baby geese. I live for hanging out with Holly and Julio, and I live for delighting over the realization that even though I didn’t plan it, their names sound superb together.

I live for all sorts of tiny little things, and when I need to, I let these tiny little things become everything.

It’s not a perfect plan, but it’s all I’ve got for now. There is no perfect plan. There’s just life. Life and reality. And tiny little things that turn into bits of fairy dust.

It’s not perfect, but I’m hoping it’s enough anyway.

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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…

Lady in waiting

…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!

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.