Zebra Sleepover

I promised to write about the Zebra/bendy sleepover that I had with the Ontario group of friends with Ehlers Danlos Syndrome. My friend, Nakki, already wrote a fantastic recap of the evening, so please, please, check it out.

It didn't matter that I haven't been diagnosed with EDS, or that I might never be diagnosed with EDS. For them, understanding, support, and a willingness to learn was enough.

It didn't matter that I only knew one person before I arrived at Tiffany's house for the sleepover. Hell, it didn't even matter that I had never spoken to Tiffany before showing up to her house to sleepover. I felt closer to these women than I do to most of my friends -- I felt like they were family. Tiffany and Michele, especially, felt like the big sisters that I never had (although Michele is tinier than I am. Heh.).

It didn't matter that we don't all have the same symptoms. There were women there with Classical EDS, Hypermobile EDS, and Vascular EDS, and it didn't matter that I don't know what type I might have, or even if I do have it.

It didn't matter that I preferred to sit on the floor rather than in a chair or on the sofa. It didn't matter that someone preferred to lie down. It didn't matter that someone had to stay hydrated via a feeding tube. It didn't matter that we had to shift positions every few minutes or have our joints crack and pop when we moved.

It didn't matter that we're not doctors or that we can't diagnose anything. We  could share our experiences about the medical system - we shared info on which doctors are great and which ones make our lives harder. We could also share our experiences of interacting with friends and family - we shared our fears, our disappointments, our triumphs, our anger, and most of all, our laughter.

Laughter really is the best medicine. We spent most of the evening and the next morning laughing, and the wee hours in between, too. I even cried - twice - as I was so touched by the energy in the room. It was an incredible experience, and it is one of the few things (along with the upcoming arrival of a niece or nephew) that makes me really consider not moving across the country.

Since the sleepover, three of my zebra friends have had hospital stays. One, that I felt particularly close to, kicked ass at recovering from a life-threatening condition. It was extremely scary there, for a little while. Well, it still is scary.

But we keep moving.

We stretch our overly stretchy ligaments, pop our crackly joints, we deal with the pain, and we keep moving.

Or we keep swimming, as Nakki says.

one step at a time

I've been missing you, blog. I have. In many ways, as the polysemy of the word missing could indicate.

I've not only been absent, which has become more usual than I'd like it to, but I've also been writing posts in my head. While dog walking, mostly, but it's tricky enough to calmly stay alert and in charge of a few canines while writing in my head, much less writing on a computer or a piece of paper.

So, I have posts, but I don't have them here. One step at a time, I suppose.

I've been taking many things one step at a time.

I'm getting stronger, one step at a time, by doing my physio exercises, being conscious of my posture, and listening to my body. I rest when I need to rest, but certainly not one second before. I have pain, sure, but it's nice to feel the pain from muscles as they develop and strengthen instead of just the pain from tendons and joints stretching farther than they should.

I'm setting up the apartment, one step at a time. I've acquired and painted a dresser for my partner to use. That'll give him the resources needed to unpack.. just in time for us to move again in August. Oh well. I've also acquired a great wingback armchar, hung a few pictures, and set up the record player. My partner has been setting up the study (also known as the second bedroom, minus a bed). It's mostly his domain, as he uses it as an office the mornings, working at the desk, while I sleep in. It also houses his collection of images of sacred spaces along with half of our large book collection. The apartment isn't ready for a housewarming party yet, but it's coming along.

And the moving thing.. I'm coming to terms with it. I researched family doctors and health cooperatives and found some that are accepting new patients. I still need to find a rheumatologist in the area, but I've found a geneticist. And I'm confident that we'll find an apartment and make do. Acquire more used furniture. Paint it. Put away our books. Walk the dog. Worry about the future. Life will continue.

I just wish I were a little steadier on my feet.

I got eggs today, as well as a job. Part II

Okay, well, I didn't get eggs this time, but I did use eggs to make bread. And I did get a job. Hurrah!

It's a summer posting at that lovely 114-year-old turreted building that I already know and love. I'll still be wardening, (cleaning, readying rooms for events, being a teeny tiny security guard) but I'll also be planning and implementing programs to get people to enjoy the space, especially the lawn. I have a few ideas that I'm pretty excited about. I'm absolutely thrilled that I'm able to spend all summer at a job that I am passionate about, and with coworkers who feel like family. Plus, I can continue to bring the pup to work, as long as she helps and isn't in the way. Silly dachshund. She's getting more confident, which is lovely, but it also means that I have to be sterner with her. Growing is fun.

Speaking of growing, I'll be planting my seedlings in a friend's garden tomorrow. We started them a few weeks ago, and most of them are doing well. The beans and squash are begging to be given more room, and the tomatoes definitely need some more space. The spinach sprouted early but has been touch-and-go since then. I'm not too sure about it. The peppers and basil are surprisingly coming into their own, as well. Yay!

My partner has moved in, and my (ex-)roomie has moved out. Our place is still pretty messy, as we don't have nearly enough bookcases or dressers. It'll be a good excuse for me to go through all of my clothes and other items to see what I can sell or give away before packing to move to Vancougar for September. Also, it'll be an interesting social experiment, of sorts, as I've never lived with a partner before. I've done some chores around the house - laundry, cleaning, baking - and have unpacked what I'm able to, and even moved the bed into the master bedroom. I hope it's enough to show that I care about our shared space, but that I don't want to dominate it. I know it's difficult enough moving into a space that someone already inhabits, without having to navigate heartstrings and such as well. Eep. I shall have my fingers crossed.

I hope you all are doing well, readers. I still feel like the good things that happen to me aren't real. Do you ever feel like that, like things are too good to be true?

Things we encountered on our afternoon walk:

• Two adorable cats. One of them played with Elliepup. Purr!
• Two adorable doxies. One of them was a piebald puppy. Ellie loved them.
• A chicken bone, which Ellie sniffed out amidst some tulips. She wanted to take it home.
• A blues guitarist. I danced a little.
• A blonde squirrel. Weeeird.
• A balmy 18C. I'd love summer if it wouldn't get any hotter than this. Glorious! 

Some piebald & longhaired doxie eyecandy: 

 Source

Lotus Land

Well, internets, it's time to bid you adieu.

Just for a little while. Only for a little while.

I'm on vacation, you see. Hurrah! Vacation! And it's a true vacation - I'm going away! I haven't gone away on vacation in years - not for anything that wasn't centered around family events. So, I am quite excited. Even if I do feel that I haven't earned it. Oh well.

I'm heading to British Columbia for a week. I'll be leaving the pup with my brother and his gal in their new house. Oh, the nerves. I sent a much-too-long list of instructions to them, and I'm sure the pup will have more luggage than I will. She'll be fine, though, and I hope they have good weather for the dog park. Ellie and I even went on a dog date and went to an off-leash dog party this week. It was fantastic! I should've taken pictures. Next time, I promise.

We (my partner and I) will be visiting his parents on the Sunshine Coast for most of the trip, but we'll also be spending a day or so in Vancouver. We have to visit his family in Van, as well as hit up the aquarium, sea wall, the public library, and probably a tea shop and a typeset and stationery shop. Eep. Excitement.

I'll take far too many photos. I promise.

Which reminds me - I've gotta get packing!

Talk to you soon, folks. I hope you all have a lovely week.

I got eggs today, as well as a job.

Actually, I got the job first, and then I picked up eggs on the way home, as I told myself that I could afford such a frivolous purchase now that I am gainfully employed.

I have worked at the establishment before, but in a different capacity. I've been a library assistant in their library, and I also worked for three years as the library coordinator for a different organization under the same green roof.

I will get as many hours as I'm able to handle, (more, even, perhaps) until the end of April, thanks to a grant through the provincial government. They've gotta use the money or they lose it, and I fit the very specific criteria to fulfill the requirements for the funding. Hurrah!

I am going to be a house warden. I will do regular cleaning and set up rooms in the house for events, take money and give receipts for events that are booked, and make sure that nobody is setting anything on fire or scratching the hardwood floors. In my downtime, I can do homework or pet my dog because the pup is allowed to come to work with me! And she can walk to work with me because it's only a 15 minute walk from my house (or one stop on the bus route).
 
It is pretty much the best job ever. Yep.

I have a rather comfortable level of general unease about it. I am feeling as if the world has slowed down, and that I am walking in pace with it. Perhaps this odd feeling is peace, or contentment, or some twisted form of accomplishment. I am uncertain. I just know that it rocks, and that it is infinitely better than the panic I felt earlier -- I was sure that this was some elaborate scheme to make me look foolish and to prey on my sympathies.

Silly, I know.

So, lesson learned. I should do stuff even if it scares me, because it may enable me to purchase eggs.

Oh - and I didn't know that convenience stores in Ontario regularly carry eggs. Where have I been for the last decade? I have been in a hole where one does not purchase eggs from a convenience store, it would seem. Eggs are purchased, and they are neither cracked nor rotten. Good work, convenience store! Good work, Cara. Good work all around.

A perfect Saturday.

I had an absolutely perfect day.

Well, sure, that isn't accurate. If pressed, I could find a few things to change or maybe even furrow my brow at. But, you see, there were hardly many of these things to change, and usually my days feel so cluttered with them that it's difficult to tell where one awful thing ends and another begins. Even the good things feel painful, usually.

But.. not today.

It was standard Sunday stuff with the partner, except we moved our Sunday to Saturday. Our Sundays will once again be filled with broadcasts in various types of sanctuaries, so we moved our one day free of obligations to Saturday. Hurrah!

I will not bore you with too many details, internetland, as, well, you will be bored. And, really, we all know how the dialogue will progress.

Oh, he let you sleep in and then made you breakfast in bed, eh? How nice. you might say.

Well.. not in bed, because that would be messy, but.. yes. I might reply.

And I suppose you talked rosily of the future.

Uh.. kinda. We joked about how little money I shell out for the lovely two-bedroom all-inclusive (with laundry!) apartment in a lovely century home in our current town, and how that amount would get us a one-bedroom without utilities in the shiftiest parts of Vancouver or Toronto..

You worked together on chores and the time went by quickly.


Yeah, but we also watched a fantastic movie about George III, read novels, worked on a crossword, dined out, and were in bed by 10 pm.


BORING.


So we won't do that at all. Instead, I will plug my radio show. It's on from 6pm-7pm EST in Canada. You can listen online and send me messages at the station, which is Trent Radio 92.7 CFFF in Peterborough, Ontario, Canada.

I'll be playing only original songs by independent Canadian songwriters and musicians. This week the theme will be transportation, so tune in and hear all about planes, trains, and automo.. biles? That doesn't sound right. I'll research that before Sunday's show. I promise.

So, sleep well, readers, spammers, and trollers. I hope you had as lovely a day as I did. It was absolutely splendid.

Fantastic Feeling

Internetland, I am feeling oddly. By that, I mean I have an odd feeling, not that my sense of touch is off. An odd tingling in my earlobes, and in the tip of my nose, and in my littlest fingers and in all of my toes.

I am uncertain, friends, for I rarely feel this way. But. I think. It just might be.

Glee. Stemming from a sense of belonging. And.. oh, maybe it's just happiness. I am unsure.

I'm incredibly terrified about what this last term at university will bring, but I'm looking forward to it. I feel like I now have a support system in place: an attentive partner, a few professor mentors to look up to and who are helping me as much as they can, a family that is giving and taking while letting me grow, and some really amazing friends - through my knitting group, and Twitter, and at the radio station.

I will not be cliche and say that things are falling into place. Because they are not. It is not gravity or nature or fate or luck. It is hard fucking work. I am working to help myself get healthier, and to keep people in my life who make me feel worthy of this odd gleeful feeling.

Helping myself and choosing to be social are both very difficult, sometimes even painful, challenges that I must work at. There have been times.. years, even.. when I was either unable to do that or I was just too afraid that I'd be unable to do that, so I didn't try. And sure, I've chosen to stay in various kinds of relationships that didn't help me. I told myself that I was being selfless in those situations, that I was making other people happy while my own happiness was not a factor. I didn't believe I was martyr - quite the opposite - for although I wasn't really present in these relationships, I wasn't sacrificing my own happiness since I didn't believe that I could be happy, or that I deserved to be happy. I've learned that I can do more, and that I am worth more, than existing solely to fill other people's needs. Also, that people are remarkable: they can adapt and grow too. They don't need me to be sick. Well.. most of them don't need me to be sick. And the ones that do.. I'm still learning to face that.

I still have a lot of work to do.

I will always have work to do on this. On me. But.. I'm beginning to think that I just might be worth it.

And for those thousands of times each day when I doubt that and I doubt myself, I have you, e-friends, to remind me that people are remarkable. Sometimes they offer you a letterpress case because people are surprising and generous and worth getting to know. But.. that's another blog post.