I wanna thank my buddy, Beans, over at Trauma Dad, for a recent post in which he talked about ugly-ness, and also linked to a pretty inspiring Ted talk by Lizzie Velasquez . Lizzie's parting words to the audience was getting them to question what defined them.

I know some people with RA, and other disabilities, really hate to be defined by their disease or disability, but I am not one of them. It certainly isn't ALL that I am, but it is a part of me. It's a part of me visually (in my strange movements, stiffness, limp, or crutches/wheelchair) and it's a part of me emotionally, mentally, intellectually, and every other -y.

It's in everything I do, helping me make decisions about whether I should get up, how I should get up, should I really get up? It's always in the back of my head (and my feet, neck, knees, wrists, shoulders, you get the idea). I have to factor it in to my plans - should I really go for a ski-doo ride on Saturday and Sunday? The answer is yes, by the way. Yes, go for those ski-doo rides, but be prepared to spend Monday, and probably Tuesday, and maybe even Wednesday, on the couch recovering (worth it).

Having this disease can really, really suck, and I often wish I didn't have it. Or, that it was less severe, with less pain, requiring less surgeries, etc. I can get pretty down about it. But, I don't have any problem in using it as defining part of who I am. I am a woman with a disability. The important part, for me, is recognizing that that definition does not make me "lesser than". It just is.

Memories of Summer Vacation

A little late to the game, but I wanted to share some pics of my summer vacation to Quebec and my first real time spent in the U.S.!!  We spent a weekend in Hampton Beach, NH, a place that Dom often went for family vacations as a child.

First up: Montgolfiere International Hot Air Balloon Festival, that actually takes place in Dom's hometown, St. Jean-sur-Richelieu, Quebec.  I've never seen hot air balloons before and we were sooooo close!  It was pretty exciting watching them race to fill the balloons to see who would be up first.  This festival lasts all week long.  We only went to the field one day, but got other evenings of watching the balloons lazily drift while we dined outside.

Hampton Beach!!  This was quite possibly the most touristy spot I have ever been, ever ever.  But, for a weekend, it was awesome!  There were people everywhere, and as you can see by the photo below, we were right in on the action.  Within spitting distance of the beach, and right below me is the main road with countless shops and fish places (and ice cream places!).  We got some great weather (and I got some ridiculous tan lines), but during some rain/the evenings our time was spent in the arcade, playing game after game and feeling like kids.  Not pictured are my honey badger and Hampton Beach mug that we chose with all our winnings. 

Much fun was had here

 Domino and I the first day there.  We didn't get sun until the next day, but it was still nice enough to hang out for a while and test the waters.  My testing stopped at around knee level (it's amazing how weak RA leaves you - those waves wanted to destroy me, even in the shallow water), but some family were brave enough to dive right in.  I'm being brave with this photo as I am posting a shot of myself in a swimsuit in which you can see my scar (right hip)!

Lone swimmer.  Dom's final adventure into the water.

At one of the highest peaks in Green Mountain National Forest.  The mountains were breath-taking (as were some of the curves on the road!).  We decided to take our time driving back to Quebec to explore Vermont a little more, and I am thankful we did.  This forest is amazing, and we also discovered cute little towns with adorable (and delicious) cafes.  I wanna go back and explore more!

And finally, home.  Labrador is beautiful, too!

Fifth Time's a Charm?

This afternoon I will be receiving my first infusion of Orencia.  I am nervous and excited.  What if I have a reaction?  What if it is the med that works for me?  So many questions and thoughts are racing through my head this morning, negative and positive.  I can't help but think that this is my fifth biologic I've tried in the course of my nearly 13 year history with RA.  This is getting tiresome, but I am still hopeful.

I've been able to get out walking again, which has been a miracle for my mental and physical health.  Both of my ankles are hit by RA and as you know, this makes walking a pain in the butt (and ankles).  I discovered that walking in Bogs, a rubber boot, somehow gives me the exact arch and ankle support I need to head out for a hike.  I never thought I would be choosing a rubber boot over my beloved hikers, but there you go.

So, T-Minus two hours til infusion time.  Dom is coming to keep me company, and the infusion room is pretty nice: comfy chair, windows and a kitchen.  I can do this.

Giving Thanks

It's Thanksgiving weekend up here in these parts.  I'm currently lounging around in a fluffy robe, after having got up the butt-crack of dawn to see off Dom.  No, he's not heading out of town, he was off to catch a bus that would take him to the starting line of his first marathon.  Sometimes I wonder how well matched we really are?  Dude is going to run for nearly four hours today and I can barely walk across the parking lot. 

But, I can walk across a parking lot, without crutches, without a wheelchair.  I can go stand at the finish line and cheer in my sweet love.  For this I am thankful.  I have to keep reminding myself that things could be worse.  Even at my bleakest, this-crap-sucks times, it could be worse.  I am thankful I have access to great, free health care; that surgeries and medicine exist that make my life better; that technology has advanced so much that I have a community of others at my fingertips who know exactly what I'm talking about, without ever having to get off my comfy couch; and especially for my family and friends (crackpots though they may be - running for HOURS - crazytown).

And, turkey. Oh, the turkey that will be consumed today.  And, pie.  Let us not forget pie.

Six Months

Six months ago yesterday my body changed yet again.  I lost some old, worn out pieces, and gained some new porcelain and metal ones.  As my body continues to become less and less human, these pieces of man-made material enable me to live a happier life.  Enable me to feel more human, more capable. 

Six months ago my life changed, I can honestly say that.

Now, if only the rest of my body would get the memo.

So...now what?

In what could go down as a stupid financial decision, but feeling like the right life and happiness decision, I have resigned from my job of 5 years (nearly 7 when you include the contract work I've done with them prior to being hired permanently).  Resigned with no back-up work, I should add.  So many factors had gone into this decision, the top reason being stress. There was dysfunction and imbalance (and sooooo many other things).  I think the place is headed in a good direction, but it will be without me.  Which is good for me, and probably good for the organization.  I've always believed in new people and new ideas as being beneficial.

I feel like I am at a crossroads.  This is an opportunity.  An opportunity to explore other career paths, maybe finally get my ass back to school like I've been talking about for years, generally deciding what I want to be when I grow up.  But, it's also, like, freaking scary.  This job was part of my identity.  Not all of me, but a part.  I don't want to jump into the first job that comes along, but I also don't want to wait so long that money is TIGHT (to say the least).

The unknown of my future is simultaneously terrifying and exciting me right now.

Where's My Ice Cream?

What is up with getting ready for vacation and needing a vacation from all that getting-readiness?  I feel like I haven't stopped (to any relaxing degree) in days.  Cleaning, packing, laundry, stressing over leaving the pup.  Someone is coming in to stay and look after the mutt and I feel like I need to clean extra, cause, you know.  Nobody needs to see my chaos.  Also?  It is really hot here.  I know I shouldn't be complaining, as some places actually have dangerous heat, but 32 degrees Celsius is hot enough.  Not to mention I am Inuit living in the North.  I'm only typing this post as I forced myself to sit for awhile, and cool down after doing the dishes and bringing laundry in off the line.

I may only be working part-time, but there is a part of me that's thinking it's kind of awesome to be so busy right before leaving, making me feel like I may actually deserve a vacation.  Scratch that.  I TOTALLY deserve a vacation.  I may have traveled a lot in the past year, but I could barely move and it hurt like hell.  This is my first trip in years (that may be an over-estimation) that does not involve work, or doctors, or bone saws.  Bring it vacay.  Montreal with all your glorious food, St. Jean-Sur-Richelieu with your hot air balloon festival, and Hampton Beach - you better have ice cream waiting for me.

Working Gal

I officially went back to work today!  Well, technically last night I went in for a few hours to help figure out where to put crap, and what to throw out.  Ahhh moving, how I hate you.  I'm planning on working three mornings this week and possible the same, or a little more, next week.  My hip is doing great, it's just the rest of my body needs to catch up.  Also, re-adjusting to working at an actual desk and chair, as opposed to sprawled on my couch with my feet on the coffee table, has already been a challenge.  I'm exhausted, to say the least.

It probably didn't help that I was woken at 4:30 by hordes of mosquitoes trying to kill Dom and I in our sleep.  Our bedroom walls/ceiling currently look like a crime scene from our revenge.

Going in to work today actually made me feel like a normal, contributing human being.  This past winter was so dependent, and so isolating.  As tiring as this is, it's pretty cool to be doing something again.

All By Myself

In a few days I will be traveling on a plane totally by myself since the operation (or well before).  I'm a little nervous, but don't think there is actually much to be worried about.  I'm at nearly 10 weeks post-op and the hip is getting stronger everyday.  I'm mostly concerned about the stairs getting on the plane, they're kind of steep and spaced far apart. 

I'm heading out for meetings, but going early to spend time with my godbabies!!  I can't wait!  I haven't seen these kids (and their parents, love them too), in months.  And, the last time I saw them was just before the replacement and the day after Dom's hand surgery.  EG., not the best time to have an enjoyable visit.

So, I haven't been back to work yet.  Which is a pretty long time.  It's been a combo of me taking my time and now my building is not open (new office building, yay!!).  I haven't worked since September and feel pretty nervous about getting back into that groove.  I'm worried that I'll be really uncomfortable in my two day long meetings coming up.

In other news, summer is coming!  We're getting the garden ready, and the greenhouse is getting full.  Can't wait to eat some fresh veggies from my backyard (well, fingers crossed we are successful).

Two Weeks

I can't say the above post title without thinking of Arnie in Total Recall, which makes me either really lame or really awesome, I can't decide which.

Anyhoo, this is to say I am two weeks with my new hip!!  Life has been better than ever and I continue to surprise myself with what these shiny pieces of metal/plastic/ceramic are allowing me to do.  Some highlights:

1.  I am now fully able to get in and out of bed by myself at all times.  Something I have been unable to do since December!

2. After a doctor's appointment to look at my incision (which is looking great, by the way.  Well, as great as an 8ish inch long incision on my butt can look), I totally jumped in on his walking group that meets at the hospital.  It took me 25 minutes, but I walked around the whole damn thing (outside!) and got a lot of praise from my doctor along the way.  My hip was fine, but my poor atrophied muscles have felt it for sure.  Love it!

3. The snow is finally melting away enough from the road that Domino and I were able to walk outside for a bit yesterday.  Sun and exercise!  Pretty soon I will resemble a human being!  Good-bye pasty, puffy body!

4. Oh, and I have been home in Labrador for about 5 days now!  I thought that I would have to live in my basement for a while to avoid the stairs (sunken living room and no bathroom on the main floor), but it turns out navigating the stairs before the replacement was actually more difficult than now.  I can scoot around all over the place.

5. I can actually walk around with just one crutch for the most part, but stick to two with the stairs.  Not ready to try that just yet.

There were a few bumps in the road, mind you.  I was looking to get a spinal as opposed to general anaesthetic, which my anaesthetist agreed with due to "instability" in my neck.  However, after nearly an hour of trying, two docs, and about 16 jabs to my spine (which, yuck), it was a no-go. I was told I probably have arthro-spinal-degeneration, or some such thing.  Apparently it also took two docs and two tries to intubate me as well.  Now, my anaesthetist wants me to wear a medic-alert bracelet stating "cervical instability" and "difficult to intubate".  I ended up with a chip in my femur during the surgery, which seemed to turn up okay. On day three, the IV narcotics majorly caught up with me and I had a very scary low-blood pressure event that was one of the yuckiest feelings ever.  Once I got off the IV, I was fine and up doing laps, exercises and stairs.  No more passing out :)  My hemoglobin dropped down, and there was a threat of transfusion, but it raised up on its own by the next day, thank goodness.

Despite these little hiccups, I have felt so thankful to have this done.  If my life is already so drastically improved, what will it be like in a few months?  I can't wait to see!

Hipsters R Us

Well, I am about five days out of THR surgery and I have to say I feel pretty darn good.  Gone is the stabbing, grinding pain that inhibited nearly every movement pre-surgery.  I do have some dull aching (and butt swelling!), which increases when I do my exercises, but I'll take it.  Every day gets better and better, already there are movements I can do that I couldn't before the surgery, it's truly changed my life already!  I won't write a long post, I'm still feeling a bit of an energy drain.  Just stopping in to thank everyone for their well wishes!

One Week

In exactly one week from now I should be (barring any delays) either in a recovery room or in my actual room at the hospital.  I am simultaneously freaked out and wicked excited.  It is high-time for this dysfunctional hip to go, high-time I tell ya.  It's causing me to live I life I do no wish to live: house-bound, inactive, and in far too much pain.

I can't help but get caught up in the minute details of it all: how am I supposed to get in and out of a car/bed when my arms are destroyed by RA?  How am I going to deal with all the damn stairs in my house?  What if my ass falls off? (I am not actually scared of this, it's in reference to my new favourite - though now inactive - blog by Arley McNeney, fellow Canadian and youngster hip recipient.  Part of her ass was literally unattached after surgery.  Seriously).

But, I have been promising myself the past couple of days to really focus on the positive.  I even have my own mantra, which I say aloud when my hip painfully grinds and pops its way into place:

"Smooth metal ball, shiny new socket.  Smooth metal ball, shiny new socket.  Smooth metal ball, shiny new socket".  Oh yes, smooth metal ball and shiny new socket, you will soon be mine!

March Updates

1. Tentative surgery date of march 30th.  Come on already!!  I need me a new hip, like, five months ago.

2.  Still not too bored, which is impressive as I have been off work since September.  I've learned just how much t.v. I can watch (a lot).  Fortunately I've recently challenged myself on a new website I've joined to read 30 books this year.  Which simultaneously sounds like a lot and not very much.

3.  Speaking of joining new websites, I've joined Pinterest (OMG, so addictive!!), twitter (less addictive), and Goodreads (take over my life why don't you?).  Social media much??

4.  I shaved my damn legs for the first time in MONTHS.  I don't really care, but it was pissing me off because I couldn't.  I got a wicked shower seat for my birthday that makes me a happier, and cleaner, person.

5.  Oh yeah, Dom broke his RIGHT hand a month ago, so we only have three good legs and three good arms between us.  And, I'm labelling my arms as "good" as I can technically use them: unlike my right leg and Dom's right hand.  It's been a real fun month.  We are a pathetic couple right now.  He had to travel by plane for surgery and everything.  With me as an escort. Yeah.

6.  We've had the best winter in a few years up here in Labrador.  And a good winter is here is lots of fluffy snow and blinding sun.  Except I rarely leave the house, never mind snowshoeing or ski-dooing.  And, with Dom's hand, the relentless snow has really made us rely on family and friends to constantly shovel us out.

What's new with you folks?  I'm a little out of the loop!

New Year's Resolution

As I posted on my facebook recently, my new year's resolution is to lose as few body parts as possible.  It's good solid advice.  I mean, we all need as many body parts as we can keep, am I right??  Alas, I said that I wanted to lose as few as possible, not lose no body parts.  For you see, I learned on December 28th, that I am in pretty desperate need of a hip replacement.  Not that I didn't know some kind of intervention was coming, the crutches and wheelchair were clues.  I just kind of thought that they might need to go in and "clean" things up a little.  I don't know if I was being naive or something, but when the doctor told me, I was shocked.  It seems silly to think back to my feelings, obviously there is some serious crap going on in there.  I can't walk or get in and out of bed by myself.  I can't really remember the last time I put on my own socks (I need some new gadgets). 

So, I probably will lose the top of my femoral head, but it's all for a greater good, right??  I know that down the road I will feel soooo much better than I do right now.  But, where I am right now is wishing I didn't have to be in need of this in the first place.  Thinking about those first couple of incredibly painful days, basically re-learning how to walk and months of rehabilitation, still not being able to put my socks on for a period of time (what I wouldn't do for some independence!!), the threat of infection (got first hand experience), and the not being able to go back.  Go back to all of my own body parts, to not having yet again some foreign object in my body.  There's a level of distrust in my own body.

Sorry this post is a little bit of a downer!  I am a bit excited, really.  I can't wait to be able to get around without aids, to go outside for a walk with my fella and pup, and to put on my own darn socks!  I know the outcome will be good, I just know that the road to get there will be tough.

Accomplishments

Today's shining glory: only breaking out into massive, sobbing hysterics once (yet - the evening is still young) while trying to get to the bathroom.  I'm proud of myself!!  I think it only took me 20-25 minutes, too, which is amazing!  Okay, okay, Dom basically carried me most of the way up there, but I made it down myself!!

I know I've been MIA lately, and that sucks.  This is an RA blog after all, and I've got some RA crap on the go.  Despite the fact that most of my time is spent on my couch watching television ALL day long, I do have pretty big things going on in my life, most of which are not fun.

More of a long-winded post, full of depressing crap* soon, I promise!!

* Okay, so my life is not total crap :)  I feel with all this stuff, my relationship is getting stronger, I can appreciate those tiny little victories so much, and Christmas is a season I love very much.  While, I'm not getting as much accomplished as I'd like (fun shopping, baking, hanging out, etc.), it's still a beautiful time of the year up here in Labrador!

Week 2

Some thoughts after my first full week of sick leave:

1. Bra-less-ness.  Ahhhhhhhhhhhh :)

2. Netflix, how I love thee.  Thank you for indulging me in all the movies that Dom hates.  Time to catch up on my horrors/thrillers!

3.  I just realized, despite not working, I do have my own uniform.  It goes like this:  sweatpants, t-shirt, slippers, bra optional.

4.  Man, I love my couch!

5.  Wow, I can kill time like nobody's business.  I can't believe I thought I'd be bored!!

When Life Hands You a Float, You Ride It

So, I work at a feminist organization, and one of the events we hold each year is Take Back the Night.  It's an opportunity for women to march down the street, chanting, singing, holding signs and protesting violence against women.  Supportive men wait for us at a local park, bbq-ing and preparing for our arrival.  Then it's fun family time with singing, poetry and other open-mic type entertainment.

This is one of my favourite events we hold.  It's utterly empowering, thrilling and totally fun.  Over 100 women and children, a float and a lot of noise.

                                                      Getting ready for last year's march

However, this is going to be the first year that I may not be able to walk.  I've been in a major flare impacting my right hip and right knee (with some major neck muscle pain to boot) for about two weeks.  I can barely make it around my house most days, never mind a 30 minute walk.

As I mentioned above, we do have a float, and I will be taking full advantage.  So, this year, instead of walking at the front and chanting until my throat is raw, I will be riding in the back and chanting until my throat is raw.  I'm still participating, but I'm a little sad that it's not how I want to be participating.

This is all a lead in to the fact that the march, this Friday night, will be my last day of work for a month.  I'm taking off a month paid sick leave to try and get my health back on track, then re-entering work on a part-time basis for a period of time.  My workplace is beyond supportive, for which I am unbearably grateful.  I know not everyone has this option.

RA got the best of me, y'all.  But I'm not going down without a massive fight, and I plan on rising from this crap by taking care of myself and RESTING.  What a novel idea :)

Belly Braggin'

Guess what I've been eating, huh?  Strawberries from my garden.  That's right, I have my own patch of tasty little morsels in my very own yard.  And, yes, I know people have been eating strawberries for a little while now this summer.  BUT, I live in Labrador people, and it's pretty amazing to eat something out of my yard when it's not even August yet (which is in a couple of days, but whatever).  It's not exactly the tropics around here.

I think I could be at least documenting some of my garden on camera so I could physically show off to people...I'll get on that.  In the meantime, here is a picture of a patch of strawberries not in my garden (and my patch doesn't have that many red yet.  It's still Labrador.  While it's 28 degrees Celsius this week, it was 7 degrees Celsius last week.  I've only eaten maybe 6 strawbs thus far):

                                                            You are the sunshine of my life

Tastes of Home

How can eating fish make me so happy??  I don't think I need anything else in my life at this very moment other than this freshly caught salmon with spinach, red pepper and avocado salad.  Salmon caught by my uncle.  I guess it would be better if Dom were here, but I know he is probably right now eating his exact replica of a lunch, so we're good.

This should be us, in a few weeks:

                                    Dom and I summer 2009, cleaning the salmon we caught.

                                               I wish I could still squat down like that! 

Living the good life, I tell ya!  Summer in Labrador ain't nothin' to be sneered at.  I'll soon be in my small, ocean-side hometown, fishing, attending a salmon festival (a whole festival dedicated to my one true love - after Domino), whale-gazing, eating great food, and loving my family.  Can't wait!

* edited to add:  I don't know what in the crap is up with Blogger, but I currently can't comment on any blogs - mine or otherwise.  I wanted to comment in the post down below and thank everyone for their support in this wacky/anxious/exciting journey I am on.  So, thank you! 
Much love and peace, Pony.

Good Things...

1.  Summer, though the temperatures are a little on the low side.  On the upswing, though!

2.  Sunflower seed butter.  Melty on my oatmeal.  Who knew??

3.  The tulips in the strawberry patch.

4.  The strawberry patch, for that matter.

5.  A three day work week coming up.  Monday and Friday off.  Sa-weet!!

5.  Having clear fallopian tubes.  Truly under-rated, and pretty key in this baby-makin' business :)