Fly Away Lupus Or An Awareness Post

When I was a young child, I thought the best superpowers to have would be one of flight and one of  invisibility.  Neither one of those superpowers came to fruition for me, at least not as I had wished for as a child. 

I did get some superpowers though, it just happens that I’m too heavy to fly on my own. Magic capes have not come into my ownership and using a broomstick is pretty much just a daily occurrence for me.  No friends, the superpowers I received are from lupus.  

 I gained invisibility, just through having an invisible illness. I had always thought being invisible would let me do fun things, perhaps grab a small slice of cake with no one knowing who’d nabbed it.  I also thought I could just randomly turn up in chairs and scare people when they went to sit on me.  And to think of all the things I’d learn while being invisible to everyone.  

The truth is having an invisible illness is not that much fun.  It is more of a fight really.  You see for a long time I had to fight to get doctors to believe there was something wrong with me.  Then I had to fight this weird idea people have of lupus. It isn’t contagious, it’s not like the television show House.  It does try to be in charge more then it should. You see the really super part of lupus is that it allows my body to attack itself.  Yep that’s right, my healthy body is bored or something so it’s own immune system destroys itself. Pretty cool huh?  Of course not, but that’s the invisible power of lupus.  

And because lupus is an invisible illness, most people do not understand or see how sick I am. Sometimes I wish I could fly away from lupus, but alas I cannot.  I can, however, share what life with lupus is like to help create awareness and understanding.  And hopefully all of this will help lead to a cure.  Now at, friends, would be an amazing super power.

Days Like Today It Is On The Wind

There is nothing like the tang of salt in the air from the ocean.  On windy days like today, the sea air is brought to us without having to hit the beach.  And on windy days like today, the sea birds don’t seem to be as talkative, perhaps it takes more concentration to just stay in flight during these days.  Since I don’t fly, at least not like the birds do, I’m not really sure if it’s harder to talk and fly in the wind or not.

The four-footed one doesn’t like the strong winds that kicked up today, although she seemed intrigued to smell the salty air without going to the beach.  It mingled with the scent of the juniper and cedar not to mention the flowers popping up everywhere.  She rolled around in the grass, her wee nose twitching so quickly I thought it would fall off.  Then she would suddenly pop up and go running around the garden again to follow a new smell, until she was distracted once more.

The sea air even fills the house on days like today when you open the windows.  It’s as if you are living on the beach without the sand getting everywhere!  Days like today remind me how special it is to live so close to the water without being right on it.  It is the  of everything because I can enjoy the salt air when it comes without taking it for granted because it’s  always there.

To The Tips Of My Toe

Toes.  Those little digits on the ends of your feet.  Small little things that have a habit of getting in the way or striking objects. Toes are marvellous things when they are wiggling in the warm sand of a beach.  Toes are wonderful for squishing in mud or letting thick carpet fluff up between them.

Of course we use our toes for walking and balance, but that’s only when you look at them from a practical vantage point.  For some people another practical aspect of toes just happens to be this neat ability to pick items with them.  Kind of like our cousins the monkeys.  And yes some folks can use their toes for climbing trees or rocks.

I don’t normally consider my toes, unless I’ve smacked them into a table leg or put a chair leg on top of one of my toes.  But these days I’m thinking a bit more about my toes because of the four-footed one.  You see she has taken to going for longer walks, specifically in the hillside areas.  My toes are paying the price for her love of adventures during the day.  The price is increased pain, probably from all the times I cracked or broke them in the past.  My toes are not made for hill walking it seems.

At first I thought my toes hurt because of my shoes.  I thought my feet were sliding around and banging into the ends of my shoes, but that doesn’t appear to be the case.  As best the professionals can tell I’m just continuing to make smaller jig saw puzzle pieces with my bones, specifically my toe bones.

Tanks, Paws And Me

The four-footed one is a bit like a tank in that no terrain is safe from her paws.  Grass?  She uses it as a pillow.  Dirt?  Bring in on.  Mud?  She is an expert in the stuff.  Rocks?  If there small she will walk in them, larger ones are meant for climbing on.  Sand?  She exfoliates her paws with the stuff.  She loves the feel of damp moss and isn’t fussed by the texture of twigs.  She washes her toes in puddles and glides on the snow and ice.

Her owner on the other hand is not a tank.  Her owner does not always enjoy the terrain we encounter on our walks.  Snow and ice aren’t so much a glide as a slide or slip!  I’d prefer not to have my toes squishing in the mud or damp moss.  Damp sand is acceptable if we are walking along the beach.  Rocks and twigs aren’t my thing; I don’t mind grass, just not with bare feet.

So why am I telling you this?  Because dear friends today’s walk started with cement which gave way to dirt and grass.  The dirt and grass gave way to rocks and sticks on hard packed dirt.  And all of that stuff led me to realize that my companion, the one I thought was a dog, is in fact a tank of sorts.  While I was struggling with the terrain she was having a ball.  While my feet were less than thrilled her paws were in paw heaven.  Somehow this doesn’t seem fair.  And I wonder how I got to where I am.  So it a case of too many hours in shoes or is this why early humans perhaps were more nomadic, to get away from things which were unpleasant underfoot?  Did I mention I’m in awe of this sweet dog of mine?  That is when my feet aren’t suffering from the path she chooses for us!

Destroying or Why My Nose Isn’t On The Ground

One of the most fascinating things I’ve rediscovered with the four-footed one is that no two days are the same.  Of course this also goes for no two walks are the same.  Not even if you take the route within the same day.  There is always something a little different that must be investigated with a focus on detail and diligence.

I suppose there is something magical about really getting caught up in the moments and just embracing them as they come along. A person, well at least this person, would be wise to let things be more magical and less spent focused on a million things happening in her head.  But of course the minute I try to be more in the moment something pops into head and I end up seeing the walk as the same one we just did.

I should point out to you that part of my problem may come from the fact that I don’t use my nose to capture the scents on a walk.  Well let me correct this, I notice some smells, but I’m not like the dog in that when I’m walking I’m not doing it with my nose down on the ground.  Granted it’s impossible for me to walk with my nose on the ground, but you get what I mean.

Perhaps this is part of why I can’t live in the moment and instead in my head…I just can’t focus on something as it is.  Perhaps deep down inside I’m just someone who has to destruct things first.

Learning To Appreciate The Slow Dance

A friend was venting her frustration at having to slow down as she is getting older because things change. She missed being up all night and still being fresh and on her game for an early morning meeting. She was quick to point out that she could still pull off the early morning meetings after being up all night, but she would be doing so at a cost of being more drained later on in the day.

I completely understand, for I too have had to come to adjustments and realizations that how I used to do things can no longer be replicated exactly. However unlike my friend, I had to come to those realizations much earlier in life thanks to lupus providing me with a huge reality check. Sometimes you just have to find another way to get things done. And if you can’t find that other way, you find out the cost benefit of doing certain things and weigh out your options more closely.

My father once described me as a human version of the Tasmanian Devil because I was always into something on going somewhere, typically with my hair on fire as I raced towards whatever held my attention. My mother referred to me as a butterfly, flitting one place to the next, resting for short periods of time before throwing myself into activity once again.

Lupus made itself known, although not by name, through a series of events which resulted in my forced slowing down. Or rather I slowed down because I wasn’t sure what was wrong with me, but once we knew what it was the doctors would surely cure it and get me back to my usual self. Only once we knew we were dealing with lupus I was sure we’d be on the path to fixing it.

Except lupus, like other chronic illnesses cannot be fixed. It can be managed, the symptoms can be masked and controlled, but once you have it, you will always have it. It’s like the side-kick or constant companion you didn’t ask for or necessarily want, but you have now. And lupus, like other chronic illnesses, does not sit in the shadows or the corners just because the symptoms are being controlled. Lupus must flex muscle now and then and remind you that your life is now a life lived with a constant companion.

Being a bit stubborn, I was pretty confident in my early days of getting to know lupus, that I would be able to carry on as normal, keep up my pace of things and lupus would just sort of fit in with everything else. Lupus laughed at me; the kind of laugh that makes your abs hurt from how hard you are laughing as you wipe tears from your eyes. Lupus taught me that I’m far more creative than I thought I would be; I can budget like a pro. Lupus also taught me that you can’t always get ahead of change, you won’t always like the changes you must deal with, but if you can and will find a way to get done what is most important. You will just do things differently at times, and that is perfectly acceptable.

A Hole In One, Shoe That Is

There isn’t a hole in my bucket, so I suppose I could use it to fetch water.  Except there is a hole…in my shoe, and it lets water in.  I didn’t know this hole existed until today because today there was a downpour which resulted in puddles that simply could not be avoided.  The act of steeping in unavoidable puddles allowed me to discover the hole.  The discovery resulted in one very cold, wet foot.  This discovery also resulted in a much shorter walk for my four-footed friend.

A friend pointed out that since my foot was already soaked and my four-footed friend didn’t seem to mind her wet paws it was a bit selfish on my part to cut the trip short.  True, but why be miserable with a soggy, squishy shoe if you don’t have to be?  Yes I understand the reality is that at some point you simply cannot get anymore wet so why bother heading for dry space especially if the dog is enjoying herself.  I guess that makes me selfish.  I’m okay with that in this case because hello…a hole in my shoe and a wet foot.

Have no fear, the four-footed one will be compensated for her walk being cut short.  And I shall say goodbye to my old shoes.