Inside Of Us

Somewhere in the library sits a picture of Beloved from when he was a young boy, around 8 or so. A smattering of freckles adorns his cheeks and hope radiates out of his clear eyes. There is barely a hint of the man he would become in that picture.

After a bright, sunshine filled day when he has failed to apply sunscreen those freckles are faintly visible. Just there if you know where to look from them before they fade away after a day or two. The hope that is visible in his eyes these days is different. It still radiates from them, but it’s a different hoe. One that is more confident, a bit more weary and just a tad less bright.

Now and then there is just a faint hint of the boy from that picture. As things change it gets a little harder to see that boy in the man he has become, but somewhere deep down that child still resides within him. That child who has hope and a quick smile because he is secure in a much smaller world occasionally peers at me from a veil of age and jaded cynicism.

I suspect the same can be said for me, the shy little girl peers back now and then, careful to not be seen if she can help. The thing is if you were to ask us, we still feel like those young children we once were now and then. I hope we never fully lose touch with those youngster as we continue to be jaded, cynical and such from all that life gives and takes from us.


Is It Real

Do we all have the ability to bend things, to make them be what we want them to be in order to make sense based on our experiences, desires, wants and such?  I’m going to say yes.  I base this on the fact that there is enough evidence around the art of positive thinking and how it influences what and how we perceive things in our lives.

We have the ability reframe our thoughts from negative to positive if we so choose and the theory is that by doing so it will influence and change how we see the experiences and events in our lives.  The reality hasn’t changed.  You’d still be stuck in traffic, but if you think in a positive way, when your car is sitting next to someone else and you catch that person’s eyes…well see if you weren’t stuck in traffic you might never have met the person.

If we reframe things into a negative way, getting stuck in traffic would consume more gas and waste our time and we’d miss out on something truly amazing and we’d never get that chance back in our lives.

The reality of being stuck in traffic does not change.  How we see it, how we see the results of it, well that’s what changes. And when we can change how we perceive that reality we can alter our responses.  Altering our responses will of course change our experiences down the road.  This could, in theory, allow us to be closer to our dreams, wants, desires.  So that’s the secret to manifesting or reaching what we want. We can bend things to our will in a way that makes it seem that the universe is working with us, in some way.

Does this mean we all actually are in control of reality?  Nope.  Just how we perceive it and what we make of it. Reality is just that, reality.

To Do Or Not To Do That Is The Question At Hand

I’m not a huge list person.  I have an informal list of things I’m working on or doing, but it’s a loose list.  It isn’t written down, just what’s in my head, but if it were to be written down it would be in pencil with almost no pressure put on it.  And the paper it would be written on would be a tiny scrap of something, you know the kind that’s just perfect for a piece of chewed gum to fit into.

This morning I woke up and decided I had maybe three things I would consider doing.  I got on with my morning routine and then suddenly I was all out of energy.  And I felt, well, very unwell.  So I got ride of my list and opted to get done what absolutely needed doing. accepting that the rest could wait.  For another day.  Or later on if for some reason lupus decided to cooperate.  (Wishful thinking for the most part.)

Now in the past, I would have considered this all to be a failure.  Failure to get the few things accomplished I had planned on getting accomplished.  Settling to get done the one thing I absolutely had to get done would, in the past be a sign of giving in, almost a weakness.  But that was the past.

I’ve learned that if I don’t heed these warnings there will be many more days where things just won’t be gotten to for a long time.  Some things will have to be forgotten at this rate.  And at that point the failures are bigger.  Big enough to result in barely getting out of bed or managing to take care of myself.  Big enough to result in unwanted, but exceedingly necessary trips to the hospital.  So yeah that kind of failure.

So today when that sudden exhaustion and other feelings hit me, I just did what needed doing and curled up with the four-footed one.  We watched mindless shows and napped.   We did not worry about what we failed to get done.  Instead we celebrated the success of holding lupus to a specific line.  That line is minimal interruption in my life.  One day is minimal versus a week or so in the hospital.  And this, my friends, is why I don’t worry too much about my t0-do lists.

Not After You

There was no fate worse than being the person last picked on a team when I was in elementary school.  Death, in fact, would be better than being the last person picked.  If you happened to be competitive in any way, but not very good at the activity being set up, you would want to ensure not only that you weren’t the last person picked, but that so-and-so was picked after you.  Ideally there would be a few people who’d be picked after you.

If you weren’t into competition and/or really did not care, well then being picked last was completely okay.  It simply did not mater to you.

These days it isn’t so much being picked last that can be a fate worse than death.  At least not in my world.  Nope, that special honor now goes to how long I’m stuck waiting on doctors or other medical professionals.  There is nothing worse to be stuck in a waiting room well past your scheduled appointment only to be taken into another room to have to wait even longer.  I understand that doctors and medical professionals are busy.  I know there are other people who need help as well.  But please don’t make me be the person who is waiting the longest.  (Okay so I am a bit competitive!)

What I do when I arrive for my appointment is see how many people are in the waiting room.  I look the group over and make a silly decision about how I need to be taken in before some of these people and get back out before they are released.  It isn’t like I have any control over these things.  Yet still, I cannot be the last person.

Of course I am relived when I get called before some of the other folks. But this is temporary because then it becomes a question of how long do I spend waiting to see the person I have the appointment with.  And the longer I wait, the more it becomes the same as being that last person picked when I was a child.

There have been times I’ve wondered if they have forgotten about me, and just when I’m getting ready to leave the room, in walks the person I have my appointment with.  Of course there are apologies and explanations and somehow I can’t help but wonder why don’t I get that attention.  Which is silly because I do get the same attention and if I need extra time I am able to get that as well.

Even though I know all of this, please, don’t leave me in the room too long.  And please don’t put all those other people before me!

Working Lupus

I was recently asked what made me go to work every day. There are a lot of simple answers to this question. According to Maslow’s hierarchy of needs, a steady pay is definitely one of the reasons. I’m not independently wealthy so I need a means to pay the bills. But of course I could go elsewhere and get some type of pay so clearly that isn’t the only answer to the question.

Another simple answer is that I love what I do. I know that sounds a bit hokey and fluffy, but it’s true. Now I can’t say that I love it enough that there aren’t moments where it doesn’t feel like work, but on the whole I love what I do. The fact I get paid to do what I love is a bonus. A huge bonus.

However when I look at this question more deeply, the fact is there is far more to it than just a simple answer. Dr. Maneesha Pednekar said it best when she was talking about ensuring a company takes care of it’s employees the same way it does it’s customers. She said:

“Employee experience is as important as Customer experience. Crafting memorable moments for Employees to remember for a life time. Somethings will never go out of fashion. The human connection, trust, empathy, hope, optimism and the opportunity to inspire and be inspired!”

My current work, place of work and people I work with/for manage to fill this and so much more.  This is to some extent what helps keeps lupus at bay.


Deadlines.  We all have them.  How we deal with them is up to each of us.  Some of us hide from them, pretending they don’t exist, however they just loom over our heads until they are right above us, pressing down with incredible weight.  Some of us get with right on whatever it is so we more than meet the deadline.  We end up well ahead of the game. In those cases the deadline seems to have little weight on us.

Now life might be interesting without deadlines, but what would we really get done if we didn’t have to get it done by a specific time?   How many things would just pile up and never get looked at or dealt with?  So yes we need them, perhaps not too many of them  and maybe, just maybe we need to figure out how to manage them a little better as far as assigning them or doing the work to get them met.

Speaking of deadlines, I’m pretty sure I have something that needs to be done, but I can’t remember what it is was because I just pushed into the later pile.  And today my later pile is rather large!

Too Tight

Apparently I have tight feet.  Extra tight.  They need to be rolled out, or at least that’s what my therapist said.  That was right before he got me a hard small ball and put it under my toes.

Then my therapist said I should stand on both m,y find basically roll my foot over the ball for a bit starting at my toes and slowly working the ball thru my arch and then in to the back of the foot.

Once I finished ha little bit of paradise he suggested I do the exact same thing to my other foot.  Because apparently he thinks I don’t feel pain.  Or I have a very short memory.  Or my feet are extra tight.  Anyway he calls this therapy and I, I call it toe-ture.  (Get it? Toe ture instead of torture?)

After I finished this little bit of exercise my therapist massaged my feet.  And it should have felt love, but it didn’t. Because of course I had basically bruised the heck out of my feet with that ball.  And no my feet did not feel any looser.  Although my heartstrings  did When he said we had to do the same thing every day for the next few days.  You see my heart sunk down to my feet, loosening the strings that held it in place.

Maybe, just maybe I will keep my tight feet and painful steps.  Because I’m not so sure torture is what the doctor ordered.