Thursday, March 13, 2014

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.

Monday, December 3, 2012

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!

Monday, November 5, 2012

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.

Sunday, October 7, 2012

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.

Monday, October 1, 2012

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.

Tuesday, September 18, 2012 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.

Thursday, August 2, 2012

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.