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!

Tis better to have laughed to the point of nausea

If you’ve read my most recent posts I don’t think you will be surprised to hear me say that life has been pretty tough lately. The endless state of wait and see mixed with a loss of independence is really getting to me. And I know it’s vague, but I just haven’t been feeling well. Then there was also the whole acupuncture debacle that resulted in a flare up of all of my symptoms for several days. I also received the disappointing news last week that the specialist I’ve been waiting to see has retired and now no one knows where to send me (a post for another day).

So it’s been tough.

And then yesterday happened.

Yesterday, on a rare day off from working two jobs, my best friend came over. We’ve been friends for approximately 92% of our lives and we were so young when we met that I don’t have any memories of life before I met her. This is the girl who shows up the morning of my birthday just as a fun surprise to say hi, even though she’s coming back later that day for dinner. This is the girl who brings me scratch and win tickets and scented hand sanitizer when she visits me in the hospital just because it’s fun. This is the girl who fulfilled one of my life long dreams (a dream I didn’t even know I had until it happened) and bought me Ellen underwear for Christmas. And it doesn’t matter that I got sick and my life derailed a bit, and she went on to live the normal university, early 20’s, working life, she is a true blue friend.

She came over yesterday and we laughed. We laughed a lot. We laughed so much that it made me nauseous but I didn’t want to stop so I popped a zofran and kept on laughing. Honestly, I don’t even know what we were laughing about. We watched silly YouTube videos and took silly pictures and recalled silly memories. I laughed until I was lightheaded and out of breath.

After she left I was exhausted. And really nauseous. Plus I felt like I might faint so I spent some time lying on the floor. Last night I felt as if I had run a marathon while my legs literally shook with exhaustion as I walked up the stairs. 24 hours later and I’m still tired. I was going to shower today but every time I stand up my body reminds me that it has no extra energy for such activities.

But I don’t even care because yesterday I laughed more than I’ve laughed in a long time and it was wonderful. Sorry to use a cliche (let’s be honest I’m not sorry – I love a good cliche!) but laughter is the best medicine (exceptions to this rule include, but are not limited to, recovering from abdominal surgery and having a feeding tube balloon lodged in your abdominal wall).

I think every chronic illness patient, and actually every person, has at one time or another weighed the option of doing something they knew they would pay for later, or just passing and saving their energy. I do it all the time. Sometimes it’s not even a choice I have to make because I just don’t feel well enough to begin with. Other times the payout, or what I often refer to as the aftermath, ends up not being worth it, and the memory of this payout makes me more likely to pass in the future.

Well, I feel terrible today, but you know what? It was worth it. And I’m so happy to be reminded that sometimes the fun is worth the payout. Sometimes the mental health benefits are worth the physical consequences. Sometimes two hours with your best friend is worth two days of recovery.

Tis better to have laughed to the point of nausea than never to have laughed at all.

And just in case I forget those words, I luckily have an embarrassingly large number of embarrassing pictures to remind me! Key word being embarrassing (read: ugly) so you can look at this much cuter picture instead.

We were much cuter then!