Thursday, June 30, 2016

The things I get up too

Shenanigans at Ikea last October. This is the stuff you do when you are missing a chunk of your tibia. I just got this picture from my mum and couldn't not share it with you. It's proof that no matter how icky the situation, there is always a reason to laugh and smile. The situation is whatever you make of it.
I will now continue pecking away like a drunken chicken, trying to catch up on everything I didn't post about over the last two months.

Wednesday, June 29, 2016

Art in the Garden

I went to a Painting in the Garden party with my mum this evening. It's exactly what it sounds like - a group of people getting together to paint outside. It was lovely. Other than a few little wooden crates and a mini letter box that I painted white a few years back, I haven't done any painting since high school. I forgot how much fun it could be. The nice thing about painting for the hell of it is that you don't have to worry about technique or meeting project guidelines. You can just do whatever your heart desires. It also doesn't matter how good the end result is. Half the fun is just letting loose, experimenting and enjoying the process (read: get paint everywhere!). I was quite weary of going at first, but I am so glad that I did. I never thought it would be so much fun XD

Me, working on my painting.
The finished project:
I thought that we would just be learning different brush stroked with a paint brush, but in the end the only part we used a brush for was to paint the edges of the canvas. First we covered the canvas in a layer of material that would give it a rough, uneven texture. Then we dropped blobs of paint over the canvas and used putty knives to spread the paint and mix the colours together, repeated several times over with different combinations of colours. Next we added the stems and leaves, followed by the centers of the flowers (I used my fingers for that part). After that I used a metal sponge to add the flower petals and then I used my fingers to dab on glitter glue. It was only then that I picked up a brush to paint the canvas's edges. And voila! It might not be as good as Van Gogh or Monet, but I loved doing it. And it sparkles. XD

This week is the first one in a long, long time that is jam packed full of fun, none health related stuff. Today was painting, tomorrow my best friend comes over, and Friday I celebrate living in Canada for twenty years (plus it will be Canada Day and that means there will be fireworks). Add to that a trip to the bookstore yesterday and a walk (albeit a short one) in the neighborhood, and I am one busy girl. A happy girl. I am knackered. I have very little endurance and walking is both physically and mentally exhausting, but it feels great to be doing "normal" things again.

As for my leg itself, I have lots to update about. My goal for tomorrow is to catch up on some stuff I missed blogging about before the external fixator came off; this weekend I will focus on typing up an update about last weeks appointments with infectious disease and my orthopedic surgeon (hint - I get really fantastic news for the first time in a very long time).

Edit: Painting outside it interesting - a leaf just fell out of my hoodie. Also, ants like to walk over the canvas. Your first instinct is to shoo them away, but it's all good. They just add to the texture! 

Tuesday, June 28, 2016

A normal kind of thing

I took a walk this evening. Not a long walk. Nothing special. Not to anywhere in particular or for any specific reason. Just a simple, short walk around the neighborhood. Not even the entire neighborhood, in fact. Just a tiny bit. We're talking a walk that used to take a couple of minutes. Five minutes, tops. I don't know how long it took me today, but it was a lot longer than five minutes. I considered timing myself before hand, but opted not too. I just needed to feel normal. Whatever normal might mean. I wanted to be able to get out of my house like any other person can and just move wherever my feet would go. And so I did. I'm not going to lie, it took a long time and it hurt pretty badly. A good part of my tried convincing me not to go at all, and when I did start it insisted that I turn back home. But I was adamant that I do something, move, in the evening sun. I just wanted it to be like last summer, before I got so sick with the bone infection. I also wanted to prove to myself that I could do it and to see how far I could go. So I did, and it felt good despite the pain in my leg. It was good pain, if that makes any kind of sense. It's hard to explain to people who have never had chronic medical problems, but those of you who have will understand. It is a pain that had a purpose (bone growing and hardening inside my leg) and that will lead to an ultimate goal - walking painfree, unaided and properly. One day it will happen.

For right now a short walk around the block is good enough. I just wanted to mark the occasion (as much of an un-occasion it actually is, after all it is just walking), because it was a big deal for me. My first purposeful walk outdoors without crutches in ten months. Just me, my feet, the sun and my cane. Glorious. I never want to forget how good re-discovering these little things feels.

Monday, June 20, 2016

Unimpressed

Bone pain making it hard to sleep tonight. I thought I would try curling up with a blanket in a rocking chair for a bit, see if I could nod off that way. No such luck. Unimpressed, new bone. I am unimpressed.

Sunday, June 19, 2016

Let me tell you...

I vacuumed my bedroom today. Yeah, that's right. I vacuumed. Not my mum, not a friend, not a maid hired to clean for me, not some mystical being in my dreams. No. Me. It was needed. It was worth it. It was a joyous occasion. The heavens parted and the sun shown down on the mighty machine of cleaning. Angels sang, trumpets were played, babies stopped crying, candy rained down on children the world round and all was good.

There is a giant grin plastered on my face and a strong feeling of satisfaction deep within me. And I am excited to do it again XD It wouldn't surprise me if I was the only person in all known human history to get so excited about vacuum cleaning. But here we are, glorious.

All hail the might machine of clean!
 It also wouldn't surprise me if you all thought I had finally lost it. It wasn't the bone infection coming back. Nor was it the PICC line and all the accompanying allergic reactions. It wasn't loosing over six centimes of bone either or the giant metal pins that stuck out of my shin for six loooong months. And it definitely wasn't all the time spent on crutches, hobbling around, or endless hours sitting in my pajama pants while binge watching netflix. No. It was the vacuuming. My medical record will state "Patient lost her mind while vacuuming". =P

Just to clarify (you know, so you don't think that I have actually gone insane), I haven't been able to vacuum since before surgery number four, which was last August, a solid ten months ago. Heck, I haven't really been able to do any type of cleaning since then. And even before that I was kind of limited by the dreaded PICC line. So being able to clean my room by myself is a big, amazing feat. It means that I am getting better. Well, hopefully. We won't know for sure until I get more x-rays. But it is certainly a good sign. And aside from that, it feels good. I feel useful, like I am gaining some independence back, as if I can fend for myself. Words can not describe how good it feels to be able to do this thing alone.

Speaking of cleaning, I also dusted my room this afternoon. Sun shining inside, fresh air breezing through the open window, some good music playing in the background, a bucket of warm water and dust. Lots and lots of dust. Fat free dust (for laughter, click here). Oh, let me tell you - I cleaned the windowsill. The wash cloth turned black. Black as darkest night. It was so satisfying to see everything get cleaned.

On a related note, cleaning seems to be good physiotherapy. Shh, don't tell my mum. I'll never hear the end of it!

And on another note, laughter ensued when I told my mum how excited I was to clean. I said "I haven't been able to do this since before surgery". To which she retorted "Which one? The one in August, November, March or the extra trip to the OR in April?" We just stared at each other and burst out laughing. Only in the world of chronic medical problems can something like that be considered funny. It's actually not funny at all. The last year in particular was filled with so much pain, worry, fatigue, and... well, I could go on for a while. But that is how we cope. We get a morbid sense of humor and laugh at everything, no matter how bad. That's how we turn our lemons into lemonade.

Anyways, it was a good day. A fantastic day. It really is the little things that count =)

Thursday, June 16, 2016

An ode to bone pain

I get a lot of bone pain in my leg. This makes sense and at this point it's normal and to be expected - although technically filled in with new bone, the gap in my tibia is no where near finished growing yet. It will still be another six months or so before all that new bone turns into normal, healthy bone. Right now it is still squishy - it needs to harden more. And that means bone pain. It is frustrating beyond belief and, well,  like the name suggests painful. Nobody likes to be in pain, but bone pain is something different. It is deep and dull, achy. It becomes everything. When you have bone pain, it's hard to concentrate on anything else. It's also sly. As Gollum would say, it is tricksy. Sometimes it's not there, but it always sneaks up on you somehow. I have a lot of bone pain at night, which can make it hard to sleep sometimes. While tossing and turning last night, I came up with this poem.

Deep, dull, strong, achy
I feel it in my bones.
When I sitting.
As I'm standing.
While I'm laying down.
No matter what I'm doing.
It doesn't matter how I'm posing;
Bone pain can always come around.

Deep, dull, strong, achy
I feel it in my bones.
When I'm happy.
If I'm cranky.
Smiling, crying.
Laughing, signing.
Worry, hope and joy.
It doesn't matter how I'm feeling;
Bone pain is such a chore.

Deep, dull, strong, achy
I feel it in my bones.
With friends.
Doctor' visits.
Shopping in the mall.
Cooking, cleaning, reading, eating.
A night out on the town.
Or simply when I'm all alone.
It doesn't matter what I'm doing;
Bone pain likes to tag along.
 
Deep, dull, strong, achy
I feel it in my bones.
Sometimes absent.
Sometimes  missing.
Sometimes just not there.
But then it creeps right back again.
It's deep, dull, strong and achy
Takes me breathe away,
I'm taken by surprise.
And then I feel it deep down;
It is all the way inside my bones.

Saturday, June 04, 2016

My leg

So this is my leg now.
I'm not quite sure what I think of it yet. I've been calling it functional. It is a functional leg. Not fully functional, but I can hobble around the house and carry a cup of tea to my room, so for the time being I am content.

That's not entirely true. I wish I could walk and run and skip and jump. I wish I could leave the house in the morning and let my feet carry me wherever they might go. I wish that every step wasn't painful. I wish that every step didn't require my full concentration. I wish that my balance was better. I wish I could bound down the stairs in the morning to get the post out of the mail box. There's lots of things I wish I could do and not being able to do them is beyond frustrating. In my head I can walk perfectly; I see myself moving about with a spring in my step. But it doesn't translate into reality. My leg doesn't respond to what my mind is telling it to do.

But I can carry a cup of tea. That's something I've been harping on about for months: if I can carry a cup of tea, everything will be alright. It doesn't fix things, but it makes them better.

Just for comparison, here are a couple of pictures of my leg when I relapsed, while I was waiting for surgery, and between all the surgeries I had in the last nine months.

Relapse.
 
Last summer, some time in June when I was starting to feel a lot worse.
Post-op appointment in September. My tibia was held together with bone cement.
Last November, right before surgery number five.
Right after surgery number five.
 A couple months later; all the incisions are healed up nicely.
Sometime in March, after surgery number six.
Just under two months ago, in April, after one of my fixator pins was removed. Conscious sedation is so nice compared to general anesthesia.
And that brings us back to now. For anyone who is curious, the really long scar is 26 centimeters long.
The last picture amuses me a bit. Different sections of the scar are different colours. This has to do with when the incisions were made. The part of the incision near my knee, for instance, was made in November whereas the middle section of the scar is was made in March. On top of that, the section closer to my knee had never been operated on before. That section of scar has healed as a nice, thing white line. The middle section, however, has been operated on six times. It is thick and ropey. Meanwhile, I also have the scars from the fixator pins the tracked through my skin. They are just ugly, super thick and a dark shade of pink/purple. I think the new version of my leg is going to take some time to get used to. I am really glad that I took pictures over the course of all these months. It's fascinating to see how my leg has changed.


Wet feet

Something big happened on Thursday. Something exciting. Something that even trumped getting the external fixator taken off. And that's really saying something because getting the fixator removed was huge. I didn't think anything could trump that. But I stand corrected.

On Thursday I was able to shower without a garbage bag taped over my leg. Say what?!?! Both my feet got wet! And it felt soooooooooo good XD I can't even describe how amazing it was. The water was so warm and comforting. And I was able to use my loofah. Do you know how bad skin looks when it hasn't been washed in that long? Sure, I was rinsing my leg with a wash clothes and soapy water, but it's not the same. The skin gets flaky and it looks like your shedding dandruff everywhere all the time. Just thinking about it makes me cringe. And don't even get me started on the amount of mushy dead skin that came off of my foot when I got it wet for the first time. Most disgusting thing ever. But now it's clean!

I feel like Gollum dancing around with the one ring when he finally wrestled it from Frodo. My leg is like my precious.
For those new to the blog, here's the gist of things. I had something called an external fixator holding my leg together for six months in order to regrow six and a half centimeters of missing bone. It wasn't allowed to get wet (infection risk and what not). It came off on May 20th, but I had to wait until the pin sites completely healed before I was allowed to get wet. I've been anxiously waiting for them to heal. On Tuesday things were still looking a bit iffy - there were a couple of small scabs left on my shin. But by Thursday I was set to go! So happy XD

Who needs shampoo and body wash when you have duct tape and garbage bags? This was my set up for the last six months. But no more!
Aside from being able to get my leg wet (the water feels like heaven trickling over my skin), I'm really excited to no longer need the duct tape. It was like a mini wax job after every shower...

I still have to sit down when I shower. By balance is horrible and I'm still pretty unsteady on my feet. And I would be absolutely lost without the removable shower head. But this is already a tremendous improvement. I don't want to forget how good it feels to rediscover these little things. Little things that everyone takes for granted but actually make up what makes life great.

Wednesday, June 01, 2016

My army of...

This is my army of minions gnomes. Behold! They stand in their stoney glory.
And now for that cringe worthy, internal groan producing pun that we've all probably heard before somewhere on the internet: To gnome me is to love me.

That gets me grinning from ear to ear every single time.

And now for something completely different. As many of you know, I've been stuck at home for the last gazillion months. Growing bone takes a very long time, after all. As a result, I've developed a hint of cabin fever. And when I say a hint, I mean a full blown case of it. One of the ways I try to combat this is by getting out of the house everyday (or every other day, depending on how I'm feeling), even if it's just a quick trip to Walmart or a drive through the city. It doesn't really matter what I do, as long as I get out, feel the sun and see some other human beings. But another way I try to keep sane is by redecorating my room. Well, as much as possible when on crutches, anyways. This is one to the things I came up with over the winter:
I got the little mushroom decorations from Ikea, on sale after Christmas (0.50$ per box of eight). I've always had a thing for post cards and stationary, so I had lots of pretty things lying about to put up on the wall. And then I got colouring post cards last fall!
The fun part is, it's really easy to change things up now because the pictures are held up with little clothe hangers. I can take stuff down, add more, etc., whenever I need a change of scenery.

Also - look at the shiny things! XD Cheap cork board from Ikea, a bit of ribbon, some thumbtacks and a nail and you're all set to go.
Edit - speaking about gnomes, I found this beauty at a garden tour last spring: