When You Find Something New

The four-footed one has discovered face cloths.  Wet face cloths to be exact.  I should back up a few steps and explain a bit.  It’s been very hot here.  Unusually hot.  Too hot for anyone wearing a fur coat.  Way too hot if the fur coat that is being worn is dark.  So naturally the four-footed one fits neatly into the category someone who is wearing a dark fur coat.

Naturally the four-footed also likes the sun more than the shade.  And refuses to have water out on her. Basically today the four-footed one would wander into the sun, flop down and sun bathe.  She’d get removed to the shade,yet she’d just move herself again.

She was provided oodles of places with water.  A mister was turned on and in a moment of desperation I made s face cloth good and damp with cold water and tossed it on her. Gently dear readers, I tossed it on her gently.  Now some animals like that.  They find it cooling.

The four-footed one though was having none of is.  She shook it off her back, went over to where if fell and proceeded to chew it.  Because she’s that kind of dog.  Unfortunately for me, she has discovered a like for these cloths.  She prefers they are wet, but will chew and roll happily on a dry one all the same.  How do I know you ask.  Because she managed to get ahold for freshly laundered ones and proceeded to have her own little party with them.  I guess when you discover a good thing it’s hard to pass it up.


Strangely Unclear

There is something strange going around here.  Not strange like aliens or Bigfoot.  Just what it is that’s so strange isn’t exactly evident or clear to me.  It’s just strange, as in slightly odd, not normal for here.

The four-footed one has started doing a grid search of sorts in the garden.  I noticed her doing vertical lines covering the whole garden.  When I turned back, I noticed she was doing the same search, this time going horizontally.  Clearly this is a bit strange.  Normally she just sort of goes wherever her nose takes her.

She has diligently carried out this grid search three times today so far.  In addition she is now doing full perimeter searches of the house.  No place has been left unsniffed.  No one has been near parts of the house today, I know this because I have been home all day.

The four-footed one has taken to crawling under blankets when she’s now in the hues.  Granted it’s rather chilly today, but not really crawl under  the blankets sort of chilly.

Sure so far everything I’ve said is about the four-footed one.  But this next piece isn’t.  The oven that has been so good to me suddenly started acting odd too.  So instead of the oven holding the set temperature, it now randomly shuts itself off or raises and lowers the temperature.  See strange things, not anything I can illy explain or place m finger on for why they are happening.  It just is.

Sandwiches, Medical Interventions, And Sun Protection Oh My!

Different things make people excited.  Just today I overheard a woman say she was super excited to be putting together all of the ingredients for her sandwiches.   Now I cannot say I have ever been in a place in my life where putting together a sandwich would make me super excited; eating a sandwich however might be a different story!

Of course how many people would be excited about having a port put in their body as I was when my doctor finally agreed it would make the most sense given the state of my veins.  Hey when you have lupus, you tend to find if you don’t have to walk around with deep bruises and such all the time when you are getting treatment, well, it’s exciting.

I’ve also been excited about injecting medications (yes I know, weird) and even sunscreen.

Had you asked me years ago if I could ever see myself excited about any of these things, I would have laughed at you. See a few years ago I was afraid of needles so the whole injecting meds and getting a port would be more of a horrible thing rather than exciting item.  As for sunscreen, well no I can’t say that I would have been excited about sunscreen either.

Today, after judging that lady who was excited about together her sandwiches I came home to discover that my special detergent, the one that adds sun protection to your clothing for 30 washes had arrived.  Now you want to talk about super exciting?  Yes this delivery is most certainly that!  People who need to avoid the sun for a variety of reasons will understand this.


Lupus makes for an odd partnership, and I’m not so sure that I would have volunteered to partner up with lupus on my own. And yet here we are, partners for life! Please don’t misunderstand, I don’t think anyone would partner with lupus on his/her own, or just because.

But since having lupus in my life I can say that I have learned many things that I might not have otherwise learned. I am stronger than I thought I ever would be, frankly than I ever thought I would have to be.

I have learned that pacing is important when it comes to using energy and strength wisely. Lupus continues to try to teach me on the importance of pacing. This is a long, drawn out lesson as when I feel like my old self, or at least close to my old self, I rush to make up for lost time. When I rush to make up for lost time, doing too much or not resting enough lupus comes up and smacks me upside the head.

I have discovered that life itself is an adventure, full of ups and downs and frankly sometimes both things happening at the same time. It reminds me of when I was a child at Disney riding on the spinning cups. Disorienting and somewhat exhilarating the same time. Yes I said lupus is exhilarating, never really sure where or how we will stop, just knowing that lupus doesn’t always lead this dance.

Most of all lupus has reminded me what unconditional love is. When you are made unreliable due to chronic illness people drop out of your life. Those who stay are the ones who love you unconditionally. They are the ones who will fist fight the raging wall of lupus with you. They have your back.

Down The Rabbit Hole I Go

Beloved slide the paper my way, a few areas circled to draw my attention to key pieces of information. The thing is, I didn’t want to read it, not the whole paper to be sure and I wasn’t feeling too keen to read the stuff he had circled either. Not because it wasn’t interesting; most of what he finds tends to catch my interest.

It was more a case of not wanting to read anything heavy or dark. Beloved, like myself, never reads the happy stuff in the paper. We wade through the stories of that make your stomach churn and we talk about the bigger picture with these stories. It’s easy to end up down the tunnel that started out as a small rabbit hole and somehow surface after realizing you’ve traveled many miles from where you have started. And I wasn’t in the mood for it.

So I pushed the paper aside pointing out I had a class to get to and tried to not give into the thoughts of what nightmare he had found to chase this time. If I pause for even a moment I knew that I would give in to the curiosity that always bubbles just below the surface and I too would be off chasing that nightmare instead of preparing for a discussion on fear. Well not so much preparing as setting up for class.

Fear itself would bring me to a different rabbit hole, it always does. One this a million different tunnels and places to explore. All of them exciting and all of them beckoning me with their own offers of something unknown. And so, despite ignoring the paper, I somehow ended up down a rabbit hole that eventually linked up to one of the ones Beloved had found so early in the morning. Because sometimes no matter how hard you try to avoid things, no matter how hard you work, fear and rabbit holes cannot be avoided.

When The Process To Get Help Hurts

I’m not the kind of  person to find joy in filling out forms and yet having a chronic illness like lupus sometimes results in the need to fill out forms.  Forms for exemptions from things.  Or forms for accommodations for things.  Sometimes the filling out of the forms for an accommodation due to health hardship is ironically enough a hardship in and of itself.

Not only is the filling out of the forms to be a challenge when your hands hurt and your head can’t seem to make the thoughts connect, but sometimes the questions themselves hurt.  Questions like “how different is your life now versus before” or my all time favorite one “how has your disability impacted your life/quality of life”.

I understand that these questions are important, but when they are asked, it’s as if you are confronted again with all you have lost or had to adjust to as a new normal.  Sure on a day-to-day basis I am still dealing with these changes, but I’m busy trying to get through as best I can so I don’t take a close look at the loss in my life.

Being asked these questions is the same as shining a spotlight on what feels like my failings.  I did not ask to have days where pouring a cup of coffee seems to be the same type of challenge as climbing Mount Everest.  I do not enjoy realizing that the long hikes I used to take are just that, things I used to do.  I am no longer able to do that.  And I certainly hate to remind myself that in my life, daily pain and medications are the norm now.  I hate being reminded that I carry out a ritual every week, one that is necessary to save my organs, but also means putting toxic substances into my body that most people will never take for the rest of their life if ever.

And that’s the rub with lupus and other chronic illnesses, you are in a state of struggling with your new normal which can change on a regular basis so you never fully mourn your losses. Instead you are harshly confronted with your losses now and then after you think you’ve done a decent job of filling in some of the void made by the changes.

Thankfully the form I had to fill out today, the one asking me what my life was like before my condition changed and how have those changes impacted my emotional, physical and spiritual health was one on the computer.  Otherwise it may have been sent in with a few watermarks of my own…tears that is.

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.