Crossing The Ts For Lupus

Beloved is the kind of man who will offer you tea if you’ve had a bad day.  Need to rant or rave?  He has a tea for that.  Need something to calm down or help you rest?  There is a tea for that too.  He has different teas for serious chat, funny chat or just curling up with a good book.  

He does not have a tea to hear or cure lupus.  Teas for inflammation?  Yes.  Teas to settle a queasy feelings?  Yep.  But nothing to cure this disease.

He has, however, a ton of patience and time to research.  So when a well-meaning, good-hearted friend told him of a tea that will cure me of my lupus, he had to check it out.  Not that he believed it would be a cure, but if it could help with a flare, why not give it a try?  So research he did.

What he discovered was the tea could only be purchased from a small group of people, because the tea is green in remote places, wth all the extras added to it being “special”.  This also means the tea is expensive.  And untested.  Only word of mouth as a validation that it works.  He decided it was more a placebo with mild anti-inflammatory ingredients and thus not worth it.  

So researched all the cures for lupus he could find.  From diet to lotions, from pills to a magical elixir.  Special diets, eating at certain times, eliminating items and such.  And of course it’s all word of mouth because if there was a cure, we’d know about it.  What do all these have that allows them to exist and for people to continue to promote them as a cure?  Hope.  They are all signs of hope.  Something to grab ahold of and anchor yourself to as you hope for a fix to a horrible, chronic illness.  But they are empty hope.  It’s like anchoring yourself with a floatations  device.  It just doesn’t work.  But you want to hope, you want something to reach for and grasp, so you do.  Because you need to cross all the to in your journey.  Just don’t fall for a healing tea.



May your future be bright someone once said to me.  And I thought what a lovely word it is, may.  It’s not a guarantee, it’s not a promise, but a sincere hope or wish.  And I’ve always been partial to the month of May with flowers in bloom, warm weather and such.

And then, many years ago the month of May as well as the word may, lost its shine for me.  After a period of time of feeling less than stellar, in the month of May I was diagnosed with lupus.  And with lupus the positive side of the word may changed.  I was told lupus may cause organ damage, it may cause neurological issues and so on.  

Now may is a bit of a balancing act, but accurate because I never know exactly how lupus will behave when I get up n the morning.  I may be stiff.  I may have lots of pain. Maybe a headache will appear or a lovely rash.  You just don’t know.

Here’s the thing though.  Although my relationship with the word may has changed, I’ve not given up on the hope and the promise.  I still believe in a bright future.  Yes it has lupus in it, unless we find a cure.  But it is not all bad.  It may have struggles and moments that aren’t fun, but it may have times filled with friends and fun.  It may have challenges, but it may also have triumphs.  So it’s a bit complicated, this May and I.

Red Flowers

There is a tiny red flower that always grows in the spot each year.  Regardless of the weather, the politics, the horrible things that happen, this red flower still grows.  

For as long as I have been there this flower grows.  And long after I leave here, this flower will carry on doing what it does.  It will disappear when winter comes and when spring comes it will reappear.  It’s like a bit of magic, nature’s way.

This red flower has been a sign of hope, strength, smiles and curiousity for me.  I’ve sat beside it on nice days when it seems the world is not what I remeber or want.  This flower has been why I’ve gotten up and gone outside some days.  And why I’ve yelled at the four-footed one who soemtimes lets her energy get in the way of seeing things like a delicate red flower growing through the cracks.

I’ve debated cutting it some years, to bring it in the house as soemthing to cherish on my own.  I’ve never done it, something always stops me and reminds me that it belongs where it is.  To cut it, to take it into the house would be to turn it captive to my whims.  It is meant to be where it is, free and wild and simply being what it is.

Today I saw the bud of the red flower, just getting ready to unfurl itself into its marvellous bit of magic.  In a day or two it will open up its magic, throwing itself out into the sunlight, the breeze and the curious nose of one small four-footed companion.  And in a few days I will read beside this red flower while the four-footed frolics in the fresh grass.  Because sometimes all we need is a red flower, growing in the cracks to be reminded that things continue, that magic exists.

From Where I’m Sitting

I love to sit here, when the sun is just breaking through the darkness of the night. It’s so peaceful and silent outside of the window an it seems as if the whole world is just standing still. During these moments it is as if I can hold time still and not worry about appointments, things going wrong or anything.  It’s pure magic.

And then the house begins to stir and it’s I see it’s a bit of a mistake that I’ve made in thinking that it’s magic. It’s just the stillness and the sense of being alone.  Not that I mind once the household begins to stir. After all the four-footed one is always eager and ready to tackle a new day. She wakes up with energy and happiness and it’s hard not to catch her vibe, even if just for a bit.

And the way Beloved never fully wakes up before he makes his way here, searching for a cup of coffee to jolt him into the here and now.  It’s impossible to not take that in and feel as if maybe there is magic in the moments where we aren’t fully awake and aware of whatever it is the day will bring us.  Once he’s managed a few sips of coffee, it’s all good and he’s alert and ready to go.

When we are both up at this time it’s different. Because he’s up for other reasons. A haunting nightmare perhaps, something from work lingering in the air or something that is too grey for his liking that must be sorted out sooner rather than later so he can rest.

But if he’s asleep at this time and I haven’t wandered over to my seat, I will sometimes just watch him, watch him sleeping with the slumber of a man who is certain of his place in this world.  Mostly though, I take to my favorite place and instead watch day start to lighten the sky and the world gets ready for the fortunes of the day.  No worries about tomorrow, or bad dreams, just the hope for the fortunes of the day.

What I Saw

Over the years I have had my palms read, my aura read and my tea leaves read. Today I had my coffee grounds read.  Yeah who knew this even existed, certainly not me.

The idea is you make a pot of coffee with grounds thrown into the bottom and of course when your pour it out, grounds end up in the bottom of your cup.  After you’ve consumed your drink the grounds stay there and a trained reader can educate you about your future.

I can tell you that this reading was much like all the other ones I’ve had, a lot of vague references about the future which can be interpreted in several different ways.  That way the reading is surely accurate, you see events unfold in a manner that is self-serving.  Or at least in keeping with the reading.

Regardless the idea that anything can offer us a glint of hope for the future or maybe just a small slice of what the future may hold is always fascinating.  Not because it will show the future, rather because it touched deep within our subconscious and laying bare our hopes, dreams, fears and such.  In other words it says more about us than the skill of the reader.  And in my case the vague statements revealed to me my anxiety, excitement and  concern about what the future may hold for career, health and general life.  I didn’t need a reading to know that, but it was intriguing all the same.


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.

The Problem With…….Me

The problem with the beach is that in order to get to the water’s edge, I have to carefully make my way across the sharp stones, course sand and debris before I reach the soft, wet sand and feel the water gently caress my feet.

The problem with the beach is that in order to enjoy myself, I need to wear protection:  beach shoes to make my way down to the water’s edge, sun screen (enough to cover a large house, applied a million times over), a large hat, sleeves and an umbrella.  It’s a lot to carry or wear for a few hours of water and sand.

The problem with the beach is that Beloved adores it.  He needs to feel the water on his feet, he needs to walk the wet sand and let the gentle breeze that is always present blow his worries away.

The problem with the forest is that there are roots and branches on the ground, threatening to trip me up.  I have to watch where I place my feet which means I cannot enjoy the majestic beauty of the forest.

The problem with the forest is that I have to jump small pieces of shrubbery and try to avoid landing on sharp stones while my balance is less than stellar to go with my shorter legs.

The problem with the forest is that Beloved adores walking through it.  He feels as if he is apart of something magical when he strides across the secretive landscape, finding treasures along the way.

The problem with time is that it keeps slipping through my hands, far too fast for my liking, at least when Beloved is around. Before I know it, it is time for him to leave again.

The problem with time is each moment seems to take an eternity to pass when Beloved isn’t here.  A lifetime seems to pass from one breath to the next while I wait for his arrival.

The problem with love is that while it is a sweet thing, it is also a bitter thing.

The problem with love is that it is fickle and fragile.  It twists and it turns with no logic, leaving me behind and struggling to find my footing.  The problem with love is that I don’t understand it, not really.  It just sort of happens and you hang on for the ride, hoping the low parts zip by faster than the good parts.