Invitation Seasons And Lupus

A friend told me she has several  wedding invitations already for late spring and summer.  Another friend shared that she has a few requests for cabin/lake time as well as beach time.  Beloved also has received invitations for various outings for spring and summer, and like most people he won’t be able to attend all of them so he will have to make choices.

There was a time in my life when I had all these invites as well, however having to miss so many things due to health issues and such the invitations slowly die out.  I don’t blame people for this, I mean at some point you get tired of a certain someone cancelling on you last-minute.  No matter how understanding you are, it gets tiresome.  I understand that.

The thing is, being the person who is always cancelling at the last-minute I also find these last-minute cancellations to be tiring.  I’m tired of not knowing until the very last moment if I will be able to attend a gathering.  Sometimes I lose the energy while I’m getting ready, such as doing my hair or getting dressed.  Other times I wake up and just know I can’t make it.

But as I said, cancelling gets tiring to, as does the whole sense of being isolated.  So often  times I will push myself to go out and deal with the aftermath as needed.  Unfortunately that has meant being short-tempered, snarky and such with friends and loved ones; pain never brings out the best of me.

On one hand it would be better to just stay away from anything that requires an invitation and such for both my sanity and those I care about.  On the other hand no one wants to be ignored.  Except when there are a million wedding and party invitations during the beautiful days of spring and summer!

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.

When Wishes Worked…How I Wish Things Worked With Lupus

Remember when you could make a wish and somehow it happened to come true? I distinctly recall standing before a fountain with a shiny coin in my hand, the warm sunshine making the water sparkle as I thought about a wish I was going to make. The mere act of throwing the coin into the fountain was the same as a handshake to seal a deal. The fountain got the coin and somehow I’d get my wish. Of course at that age I was young enough to be wishing for cake for a snack or a trip to the zoo or something of that nature. Stuff my parents could handle.

When I was around 15 I made a different wish, much darker and thus no fountain or shiny coin was required. Just a soft whispered wish in the darkness of night with no actual expectation of the magic to work this time, rather a desperate hope that somehow what I wished for would just sort of happen. That wish, so much heavier, was not one my parents would have approved of or even wanted to hear. It was for me and me alone. And it didn’t’ happen because when you wish to make the pain stop in any way possible it lacks action. I remember during this trying time of odd aches and pains and doctors advising my parents that there really wasn’t anything wrong me that then surely there was no use in me saying anything. But did that mean that I was meant to suffer in silence; lost in some strange place of desperation to be believed, to be relived of the pain?

I also recall that somewhere along the journey that is life I asked for odd things for gifts, be it my birthday or Christmas. One year I asked for new knees. Another I asked for new hips. And then there was the period of time I asked to just not be in pain any more. Those gifts never happened. They were beyond the magic of a shiny coin, beyond the whispered desperate hopes that arise to your lips during the dark nights.

Wouldn’t it be nice to just toss a shiny coin back in a fountain and know that somehow, some way, your wish would come true, not matter how small (a slice of cake for example) or large (for lupus to cease to exist) the wish was? If only that option existed, I can think of a few things I’d wish into oblivion and a few more I’d wish to be more of a daily reality. But that place, that special magic, doesn’t exist just yet, so I guess I will just continue to work with my doctors and try to keep lupus mostly in check. Because Beloved doesn’t want to have to don a tutu and try-out for the wish fairy role, even if only to make me laugh.

Lupus My Internal War

“You should feel a nice gentle stretch right there…” she said in a calm and soothing voice. What she should have said is “this is going to hurt like nothing you’ve ever felt before” and followed that up with an evil laugh because that’s more what it was like. But I’m sure she’s a lovely person who got into physiotherapy solely to help other people. I’m sure she’s not into torturing humans; I mean she doesn’t look like the sort of person who would do that. Yes I know, you can’t go by looks.

As she carried on with her routine I wondered why healthy people, sane people for that matter would willingly part with good money to be tortured. It doesn’t’ make sense to me. Torture, by the way, at least according to my insurance company, is not a cheap form of therapy. Surprisingly, the insurance company will pay for the expense because it is more responsible than medical device options. Or perhaps it is because deep down they know it’s torture and so they will part with the money provided they aren’t’ the ones feeling the pain.

When I told a friend I was heading off for physio, basically light stretching and body manipulation she was envious. So envious in fact that she asked me what my doctor wrote in order to get this covered by insurance. I told her he wrote “diagnosis: lupus” and if she wanted that she would have to take all the rest of the things that came with it as well. She said that was a bit extreme for some pampering.

She calls it pampering and I call it pure hell followed by days of slowly recovering. So why go through it if it isn’t relaxing or reliving? Because like so many things with lupus you have to go through discomfort in order to get things into better shape or to protect things for further damage. It isn’t about pampering, a spa day or restorative treatments. It’s literally hell and I get it because in some way this is my body’s internal war and last time I checked, war is hell.  I’m just hoping for a truce soon.

Little Things That Are Bigger Than They Should Be

The experts tell us it is the little things in life. As in take pleasure in the little things in life. Don’t sweat the little stuff (stuff is a thing right?) and they follow that up with how everything is ultimately just the little stuff. So I guess that means we are supposed to enjoy and not stress too much when it comes to everything.

But then there are the other little things. You know like how one person never puts his/her dirty dishes in the dish washer. Or how a person is always five minutes late. Those are all the little things people do on a daily basis that other people have a dislike life. A lot of times the person with the dislike for the behavior or attitude won’t say anything because, well in the end, it’s just a little thing right? But little things all add up and soon you can have a huge mountain of little things that have lead to a giant mess of can’t handle/take it any longer stuff.

Not that I’m complaining about any of that because I’m not. Nope, the little things that I guess I should enjoy but really don’t is how my desk isn’t’ exactly even with the credenza. I know, first world, privileged, problems. Shut your mouth and move to the end of the line. I get that. And really I wouldn’t complain or dislike it so much other than that I keep smacking my elbow on the edge that sticks out.

I know some people will assure me that the pain I feel from smacking a funny bone (which is only ever funny when it happens to someone else) is not that big of deal. Not when you consider there are people missing elbows so they can’t hit them, or do many other things that require the use of the arm and the elbow. There are other people who can’t move their arms and would like to move them, even if it meant the occasional smack of the elbow. And then there are people who can move their arms, have an elbow, but just have no feeling. I’m sure they’d like to have the pain sensation to alert them to the fact there may be an injury or at the least a bruise.

This last smack of the elbow was a bit more than just a smack, I chipped away more bone. So I have a very sore, purple and swollen elbow. And yes I know it’s still just a little thing. But it wasn’t’ expected, and it has created inconvenience and since most things in my life aren’t super bad (lupus does have a lot special moments however) I can fixate on this and make it a big thing or spend the same energy trying to find a way to avoid doing this in the future. Which I will move onto in a few moments. Like once the pain has settled enough and the movement is back more. Then I will work on the other part. Until that time, this little thing is a huge thing and it’s not funny. Only because it happened to me.

Speed Bumps and Marathons

I was run over by a truck today.  A massive gravel truck with an extra full load.  I believe it ran over me and then backed over me for good measure.  After that I lost count of how many vehicles used me as an annoying speed bump, barely slowing down as the ran over me too

I always thought, or rather Bugs Bunny cartoons taught me to expect, that when you get run over you’d simply become flat like a pancake. And of course through the luck of animation you’d be a bit like an accordion, all folded up.  But basically you’d come out okay in the end.  At least that’s how Wylie E Coyote was impacted.

But my friends that’s not at all what this is like.  This is unending pain, unyielding exhaustion and loss of energy. Before you become outraged and demand to know the trucking company who left me a boneless, mangled mess, settle down.  You see the trucking company was hired by lupus.

Lupus paid the driver to take an extra heavy load and hit me at high speed.  Probably paid out a bonus for he backing the truck back up over me before taking off.  The added cars that used me as a speed bump were just an added, unpaid bonus.

I think I may have used up my allotment of energy with this post to be honest.  But this is temporary, this pain and exhaustion.  I may not be like an accordion, but I’m like a runner who finds her second wind when it seems she can’t run another step.  You see lupus and I are running a marathon.  And while I may not always be ahead, it is a long race and I will come out winning this one.

Ruffled and Riled to the Point of Ripples

For the first time in a long time I willingly shut off the news. It wasn’t a case of being in some remote location where you can’t get television or the internet or anything like that. I wasn’t on a retreat or trying to disconnect from things.

I just shut off the news. All of it because I could not find one good thing mentioned in the news. Instead it was full of hate and violence. Doom and despair. And I have had my fill of that thank you all the same.

Is the world a darker place? A more violent place these days? Some people would certainly argue that it is. Or at least it is in a very angry stage. What is probably different this time compared to other times in history when people were angry or upset about something is that now it truly can be played out on a global scale.

No longer can a place hide the fact that educating women is frowned upon. No longer can people who are different from the locals be made to hide behind a curtain and pretend they simply don’t exist. Because they do and they are visible. They demand to have their voices heard, their injustices righted and their rights provided. The girls demand to go to school as they know other females around the world go to school. They see how it can be and long for the same.

And those in a position of help or privilege can no longer pretend to not see what is happening “over there”, because “over there” can be easily found on the internet, or the news. And that may be why things seem so different, so angry. It may just be that now things play out on a much larger scale with various groups vying for a voice and a space based on their own agendas.

And it’s so much easier to get caught up in something when there is a mass ground swell. It’s become a thing to do, some say as they hold signs witnessing that certain lives matter. But all lives matter don’t they? When we start to point to certain groups, we can create a powder keg we weren’t’ expecting.

When we start to demand rights for a specific group, but not another, what are we really saying? Do we not all deserve the right to be educated? Do we not all deserve the right to seek out education without fear of being beaten or killed? Are we not all made equal? Allowed to love whom we wish? Can we stand by and tell certain groups yes we have infrastructure for so many people in your country, just not you because you don’t meet the standard?

Where does it end? Who’s measuring stick do we use? Who has the right answers anyway? And in the end does it matter nearly as much as knowing that people aren’t dying for things that some take for granted? At the same time, in the end does not all life matter? Do we not all have the potential for doing something amazing? Leaving the world a little better than how we found it? Can we not all create a ripple in the small ponds of our lives until those ripples move out and touch other ripples? Is that asking too much?

Does the global response only work for things where there is hate, angry, hurt and abuse? We can’t we use the same methods to bring about good, peace, acceptable and calm?

So I turned off the news today because more people had been killed, more people were denied justice and rights. And the fact is, the news reporting it isn’t making things any better. The better must come from each of us, deciding that it is all we can do to make things better. That sitting and watching the news, commenting on how sad it is no longer can be enough. We’ve done it for years and nothing has happened. To think the results will suddenly change on their own is foolish. So I shut off the news, and started to plan my ripples.

Will you be planning your ripple?  If so I’d love to hear about it and see our ripples grow together and be the agents of change we all can be.