Keep Going

I sat there on the hard plastic chair letting harsh medical smells invade my thoughts.  I’d given up waiting to hear the soft little noises letting me know the doctor was on his way, or at least the nurse, into the room.  There is something about waiting in a doctor’s office that makes time move in some strange way.  Time stretches to an incredible length and it remains that way.  Until.

Until the doctor or nurse is saying something serious.  And then  time zips by.  But I was just waiting.  Waiting for the doctor to tell me and go over lab results.  Waiting for the doctor to look at the newest round of swelling and maybe do something about it.  Waiting for the doctor to tell me he found a way to tame lupus.

The longer I waited the more I wondered what was going on.  And knowing me, knowing how my mind works, I opted to pull out a book to distract myself while I waited.  At least with a book I stop watching the clock, of course there is that wee issue of someone coming in when I’m not really ready to stop reading.

Finally the door opened, at a good place to stop riding, and my doctor came in.  Normally he has energy and a smile, but today that smile was forced and tired.  He made his way through my labs, looked at the swelling and told me that he didn’t know how anyone with a chronic illness keeps going.  Not after repeatedly bad labs.  The answer is that it’s tiring, but you keep going because there is always hope.  Always something just around the corner that may be the answer.


Goodness Me

His voice drifted lightly to where I was sitting. Melodic poetry swirled around me from the kitchen, where he was singing as he cooked.  Van Morrison, I suspected.  It was, after all, one of those days.  A day full of cooking and music while I sat uselessly in a chair trying to forget about harsh and ugly words.  Those which had flown so easily from my lips to lash at him.

And now he was in the kitchen, singing what I was certain was Van Morrison’s songs while he prepared what sounded like enough food to last at least a month.  Van, after all, was skilled at putting poetry to music and Beloved was nothing if not a lover of poetry and music. He also happens to not be a bad signer, having spent time with choirs in a previous life.  Me, I can’t carry a tune in a bucket and I have been offered money to not sing.

The four-footed one happens to be a lover of music, well at least fond of music.  She is a lover of food and will endure even my version of singing if it means a scrap of food might come her way.  She is also no fool, she could sense this mood that had drifted down upon me sometime while I slept and thus had given me a wide berth all day long.  She and Beloved are no fools, opting to provide me with my own space and ignoring my mood.

It is hard, these times, when I realize just how little I energy or strength to do anything.  It is hard to allow that lupus has found an upper hand again and now I must sit and rest, waiting until I had found the way through this latest downturn.  While Beloved had to manage the house, the dog, his needs and mine all on his own.  Not that he complains, not ever, which makes it even worse somehow. As though he is above this, saintly next to my dark sinned filled wretched soul.

The harsh, ugly words had been hurled his way after he told me to get some rest when he brought me a book to read, a knowing smile just about there on his lips. I had wanted to throw that book at him.  Truthfully I wanted him to have to sit in the chair, rest while the world went on all around him.  I’d not ask him to sit like that for long, just enough for him to see what it was like for me as fun went on where he was not.  (Not that my singing would entice even the most deaf of demons to come into where I was, but it  you get the idea.)

I knew, as the last lines of a song hung gently in the air, that soon he’d come to see if I wanted help heading up to bed. As if I were a small child who needed to be told to go to bed, or worse needed to be carried to bed .   Oh yes, this then is lupus at its worst. While not the disease, no the disease can be so much worse. Rather this is me at my worst, Beloved and the four-footed one being targets of my rage since I cannot throw a book or toss harsh words at lupus in any way that causes any damage.



The Wolf and The Resistence

In what seems like a world from another galaxy on some far-flung planet, I was once a healthy person who didn’t cringe about things like sunlight, alfalfa and bugs from sick people. I was once, relatively carefree and full of adventure. 

But like all good stories there must be some obstacle, some challenge or struggle which the main character must work through. In my case, not that I’m saying it’s a good story, that struggle is this thing called lupus. 

You may think of lupus, in this case, as being cast into the role of the evil villain.  Some of the best stories involve animals and in this case, you may think of lupus as a wolf, after all that is what it is Latin (if my memory is still somewhat correct on high school Latin).   Lupus stalks me as I make my way through my new life on this strange planet.  When I try to achieve my carefree life with adventure on this planet, Lupus creeps in finding my vulnerabilities and exploiting them to suit his needs. 

Currently there is no happily ever-after to this story, because there is no cure for lupus.  What there is instead a tolerance, a learning of patience and understanding what it is to not have everything so easily.  In some ways, while I fear the wolf, I smile when he is at a distance for I know I’m managing this balance required in my new life and I’m stretching and growing in other ways when it is possible, such as compassion and reflecting before I act.  Those are good things, things that on my former planet I might not have learned, but if I were to be asked if I’d prefer these lessons on my carefree, adventure-filled former life I know what my answer would be in a heartbeat.  Alas it isn’t an option to go back, so instead I work to make the best of life with lupus, and as long as the wolf is only spotted off in the distance to keep me in check I can manage. And when the wolf comes right into my house, well I work on managing in other ways, grateful for the help and support of others.

So does this mean I’m part of the resistance, the resistance fighting against the incurable illness?  You bet I am.

A Real Struggle

I struggle to understand some things. Some of it may seem like common sense to others, but to me I just do not understand it. Such as abuse, physical, mental or spiritual. I know it exists and I understand it, but I fail to understand how someone can be bent in the direction of carrying out such abuse.

There are myriad of theories to be sure, but at the end of it, I just can’t see myself in a position of deriving joy or pleasure from abusing someone. I also struggle to understand why a certain group of people’s needs supersedes others. And this is a personal point for me. We all want to be first, we all want to matter and so on. But I fail to understand why one group’s need to be protected from certain substances takes greater priority than my need to have my pain managed. And no, I am by no means an addict nor am I seeking narcotics. However, when I show up in an emergency room in so much pain that I am physically sick and no longer able to speak without tears I would appreciate being afforded respect and dignity.

Not being labeled as drug seeking simply because there is a huge influx of people who seem addicted to pain meds and have learned to claim to have certain symptoms in order to get their fix. And because of these people, when others with chronic pain or such come in to emergency rooms in dire need of help, they are now looked at as being drug seeking. I do not understand how one group can be allowed to determine the health care questions and assumptions for everyone who walks through the door.

Of course I also fail to understand how we can have such a great understanding about addiction and such a little understanding of the many different ways lupus can affect a person’s quality of life and pain levels.

I struggle to understand why my needs and concerns are not taken as seriously by the government as the needs of addicts. And why I must be painted with the same brush as they are when my needs and situation are rather different from theirs. Perhaps the idea is, it is okay to waste my time and a nurse’s time going through a rather long and ridiculous questionnaire just to have a doctor review it before taking my lupus issues seriously.

Sickness Galore

I’m not good at being sick, which is funny considering I am chronically ill and have sickness issues on a fairly regular basis. Still, no matter how much practice I get at being sick, I am still no good at it. To be honest I’d be fine without ever getting any more practice at this. And I am totally okay with not being sick either.

I suspect that this comes as a surprise to some people and to others it’s just a case of my stubbornness. If I could find the person who said I need more sickness in my life, I would probably have words with that person. But alas I cannot find one single person. And it’s that time of year when there are hordes of sick people to found anywhere and everywhere. Heck they will find you even if you don’t want to be fine. Trust me, I’ve tried to hide from them.

Beloved half laughs when I demand a sealed bunker, but when you have a crazy immune system and take chemotherapy to try and control it, well those sniffles suddenly become rather threatening. Your wee sore throat gives me the heejeebeejees. Your minor cold makes me shudder in fear. I’m terrified of getting sick enough to have to head to the hospital. Hospitals are full of sick people and we know how I feel about them!

So please, if you see me avoiding you like the plague, or holding a can of Lysol to spritz you down with prior to getting near you, do not take offense. I just don’t do sick well.

Altered Dreams And New Found Passions

Do what you love, they said.  Follow your passion they said.  It would all come together they assured me.  And I suspect they told many people the same thing.

Thing that I love to do:  reading, research and history.  My passion:  oh dear me that’s not easy to narrow down, but let’s say studying history and events.  And turn that all into a career?  Yeah not exactly the simplest of things.

So instead I work it out as best I can in fitting in as much as I can and feeding my assigns in various outlets as I can.  These are things that most, if not all, people juggle.  But some of us also juggle things like lupus.  A life altering, at times, chronic illness.

And lupus says that it has a say in my passions and how I feed them.  Lupus also has a say in my career.  Not that I don’t have one, but it altered the course I was on once upon a time.

This isn’t all bad though.  Lupus sent my life on a different trajectory, one I never would have considered prior being showing this path.  And to one I’m still exploring and finding my way.  Now I could be angry about my plans being changed, except I can’t be, not when it’s offers me other opportunities.  Not easy one, but interesting ones all the same.


It’s easy to lose sight of things.  It’s easy to be caught up in details and apply that tunnel vision to everything.  There times this is a good thing, and then there are times that we miss out on so much because we simply didn’t allow ourselves to look further afield, check out what’s happening on the sidelines or take in the whole horizon.

If we only glance up occasionally, if we only shift our focus for the briefest of moments, it is easy to not see everything.  At times what we miss might just be an entertaining moments, or every day things.  Nothing major.

But now and then, every once and awhile we will encounter an experience where perhaps if we just paid a little more attention to things, we may have been there for something big.  The problem is no one knows when those moments happen.

Now I am not saying I would have made a difference to the outcome, but perhaps if I had spent a little less time with my head buried in my own work I may have noticed when a colleague changed.  I’m not talking hairstyles either.  A group of my coworkers and I all wondered this very thing.  If each one of us had taken a little more time out of our own worlds perhaps the one coworker could have felt as if he could reach out.  Instead, for whatever reason, he felt the easiest way to cope was to end his own life.

If each of us shifted our focus a little, if we all stopped getting stuck in those small details we might be able to be there for someone when one of those moments comes up in their lives.  And maybe, just maybe we’d be a little more connected and aware.