Student Of Lupus

I was  a bit of a lazy student through school. Well until my Phd.  But for the majority of my education, I never really applied myself to lesson.  I attended classes, half-listened to teachers and had no problem with the readings and assignments or tests.  I was fortunate.

And then I got lupus.  And suddenly I couldn’t be a lazy student any more.  Required reading?  Not all that easy.  Assignments and tests?  Yeah it is called living and managing lupus as best I can.  No extra credit here.  

And the lessons are all day long, every day.   No breaks.   Not exactly what Im used to.  But then you don’t always get to choose.

Apparently having a chronic illness like luous means you are required to be engaged, actively participating in the lessons.  Don’t  worry, they aren’t afraid to repeat the lesson until you get it.  And even then, sometimes after you have mastered the matieral, they just make you do the lesson again.  Of course like any good teacher, lupus  never presents the lessons the same way each time.  Things get switched up and such. 

None of this is what I wanted, but it has taught me to be a better student, to be more appreciative of things.  And it’s kept me humble in more ways than I needed.  So I guess there is that lesson to.


A Little Fun

Now and then I get this urge to create things. Now and then I get this urge to do something about different.

Advocacy can be fun, it can be different, but it can also be exhausting and time consuming. There are a ton of amazing lupus advocates out there in the world. People who organize walks, fund raisers, charity auctions and meeting with the government.

I do not do any of those things. Not because I don’t want to, I just don’t have the energy or the capacity in some cases. In other cases it’s because it’s not within my area of expertise. Let’s face it, my skills are very narrow and not lending too much to advocacy.

So this is my attempt at creating a little something that promotes lupus awareness in a fun and easy way. Take a look, let me know what you think!

Smarty No Pants

The four-footed one is probably smarter than I am. Well there is no probably about it, she is. She’s figured out how to get what she wants without using words, or even politics. She did not flash money at me nor did she attempt to woo me in any way. Oh no, this little bundle of fur, captured in paws and a wiggly tail did not do anything of the sort. And yet she has managed to get everything she wants with just a simple look or turn to her head. And even worse, she has trained me to anticipate what she wants. How is it that this wee creature has figured me out so quickly when I still am figuring me out as I go? How did she manage to make it all so easily fit together and twist it for what she needs? Is this a skill she was born with or is it that she has been a silent observer, watching me, learning and waiting for the right moment? It isn’t likely that she will ever spill her secret either. So I guess I will just have to see it as it is, she is smarter than I am at figuring out the people in her life and how to set things up to benefit herself. Oh well, pretty sure Beloved and I are tied for who’s next in line!  Well I’m sure  I’m just a bit ahead in this case, but don’t tell him.

So Little Time, So Much To Explore

Some people like to explore ideas, concepts or the world through touching, watching and doing.  Some people like to explore the world through the written word and others still by listening to others.  Most people tend to lean towards a combination of ways to explore and understand things.

And then, well then there is the four-footed one’s approach to exploring the world.  She is a watcher and a doer, but mostly she explores through the sense of touch.  And by touch I mean using her tongue.  I’m pretty certain the  world, to her, is divided into two camps:  food and not food.

The way to know if something is food or not is to touch it. With at least your tongue.  But it’s even better if you can get the whole thing in your mouth, give it a feel and a small chew.  All in the name of exploration of course.  And so leaves, paper, thread and dirt have all been explored this way. As has grass, bark and rocks.

Now she’s moved onto other items:  dozing wasps and bees, beetles and slugs.  And now spiders.  So far only spiders are clearly in the food category.  A delicacy even based on her desire to continue to eat them and actively search them out.  I might even go far enough as to say they are the most desirous thing in her diet right now and it’s not for lack of me providing her food.

Now if I could only teach her that the whole world doesn’t need to be explored so vigorously.

Lessons From Books

It can be hard to accept help, even though you need it.  I know I struggle with asking for help.  Even worse for me is actually accepting help from someone.  Even if I’ve asked for it first.

it really shouldn’t seem to be such a huge challenge for me.  But exhausted as I was today, as much as I knew I would need help carrying all my stuff home, I refused to let Beloved carry it all.  I carried my backpack which had my tablet and purse in it.  Beloved carried the bag off books I purchased.  He also carried my water bottle.

Part of this for me is trying to prove that despite lupus, I can still do things.  Part of this is probably ego and pride because for me I struggle with recognizing that lupus has limited some of what I can do.

A strong person, a wise person, would recognize the need to be a bit kinder to herself when she isn’t feeling well. After all asking for help is a sign of strength and wisdom.  The same with accepting the help.

Pits not just okay to ask for help, it’s an empowering thing to do.  And I reminded myself of this today as Beloved happily stepped in to help out.  So I’m going to work on being more empowered by this.  And in turn, Beloved told me, him being able to help out makes him feel like he is supporting me with my struggles.

Making Up A Surprise

Beloved is a man of surprises.  Not only can he do my hair in lovely ways (yet again today he patiently did my hair, this from a man who eschews to own a comb), but if you want a nice, steady eyeliner applied, he’s your man.

To be fair he did have to be told how and when to apply it, but after listening and watching YouTube, he decided to try and help me with my makeup.  I suspect a wee disaster on the vanity may have resulted in this urgency as my makeup powder which went everywhere did not want to cleanup up easily.  He ended up cleaning it while he muttered under his breath.

When I came back from a fresh go around of mummy wrappings on my burned right hand, he settled me down with a book while he disappeared.  Evidently to watch YouTube.  So he could learn how to help apply my makeup.  Of course he has no clue what I wear or when I opt to wear it, but he had ideas.

He decided I needed an elegantly lined eye to go with a subtle smokey eye.  He struggled to get the blush just so given the effort involved in removing a lupus rash via makeup.  All in all it wasn’t bad, but he may need to revisit the art of lining lips as he got a bit weird with that.

Nothing In Here To See or Doors And Dogs

The four-footed one has mastered opening and closing a certain door in the house.  No, not the door to go in or out of the house.  Instead this is the door to her food and treats.  Yes I stash them behind a door, well actually they are in a store-room.  The room has a regular door handle.

The four-footed one has figured out if she jumps and pushes the handle a certain way, she can get the door to spring open.  After that it’s child’s play (or is that puppy’s play) to pop the latch to the bin her food is n.  And then she just needs to nudge the bin over, and viola instant access.  Want a treat instead?  Even easier, you just jump twice to get the height and grab your stuff off the shelf.

The kick to all this is when she’s done, she can’t get the bin back up or its latch closed, but she has learned to hook the door with her paw and give it a tug quickly once she’s on e outside.  Doing this will let the door close and no one so the wiser to her tricks.  Thst is until a person goes into that room and discovers the knocked over bin or kibble on the floor.