The Day My Disease Caused A Moment Of Unease

One of Beloved’s co-workers stopped by the other day.  I had ever met this man before.  I happened to be at home when he stopped by to get few documents from Beloved.

Because I wasn’t going anywhere and we weren’t expecting anyone, I didn’t bother with covering up my stunning butterfly rash.  It was a sight to behold, in all of its glowing rashness.

Naturally, after being home for a few hours already and no one stopping by the house, I sort of forgot about my appearance.  I know, hard to believe, but I can actually forget what it looks like.  So naturally I was the one who was closest to the door when the bell rang.

Of course I answered the door in all my lupus glory. I mean I radiated all the stunning side effects of lupus.  Swollen joints, rash.  My hair looked so bad I almost thought had mange.  Oh and I was sporting some lovely deep purplish red bruises on my arms and neck.  He bruises are a side effect of my medication.

Now that I’ve painted this beautiful image for you, perhaps dear readers you will understand why this poor, unsuspecting individual recoiled led in horror as I greeted home with a “yes”.   Not his fault.  He wasn’t warned there was the making of a horror story behind that door.

After he struggled to regain his composure he asked for Beloved.  I invited him into the house while I went to find Beloved, but this man was smart.  He opted to wait outside least he should catch whatever fresh hell had infected me.

Beloved and this co-worker chatted, finally inside.  Documents were retrieved and shared and this man apologized for his reaction which he said he hoped did not cause that much discomfort to me.

The fact is when you have a disease such as this, or a terminal one, you create dis-ease or discomfort for healthy people.  We reminded that  bad things can happen in the blink of an eye.  That life is fleeting.  No one knows what to really do with us, or what to say.  And for some reason I feel guilty for causing this man distress.  When in fact it is just a fact of life and we should all be able to meet each in the middle.


It Was A Slice Of A Day

Some days you just have to give in and have that slice of pizza or two.  Or perhaps it’s a day that just calls for a slice of cake.  Some days, these are the only things to get us through.  We shouldn’t feel guilty about giving in to this once in a while.

Today was a pizza day for me.  Well okay, if I had thought it through more closely cake might have been the answer.  But pizza worked.  So yes even though it’s not ideal for me to consume it, I tossed caution into the wind and had pizza.

Friends, I was bold. I was fierce.  I ate two slices.  I know, shocking.  But I refuse to feel  guilty about this.  It was a rough day.  Pizza was a healing balm after a day with many hiccups and issues.

Beloved partook of the pizza as well and there is plenty left for him to munch on later on if he so wishes.  I have had my pizza fill for a good while now.  Now cake, well cake may be another issue.  Come to think of it chocolate may be used as well.  But not now. For now I am in a place of contentment.  And I refuse to feel guilty about reaching for one or two slices of pizza.  I also refuse to feel guilty for making the choice to have pizza based on the day I had.  Besides, I know it’s not ideal with lupus nor the medications I take.  But it’s not the end of the world either.

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.

Bagging It

the four-footed one has developed a thing for bags.  Handbags, messenger bags, backpacks and shopping bags.  None of these are safe from her curiosity.  Or her nose.  Or her paws.

I’m not sure when she first discovered her thing for bags, but I can attest to having her paws in my bag.  I caught her today with her nose, rooting around in one of my bags.  There is something there that she would find interesting, but still she does it.  It’s a little odd, but super embarrassing when she does it to a guest.

A little earlier today we had a dear friend of Beloved’s drop by for a visit.  The four-footed one wasn’t just interested in the person.  Oh no!  She  happily stuck her head in  the bag, and at some point she climbed right in and made herself at home.  Because who wouldn’t want a dog in their bag?

Thankfully this friend was understanding about our poorly behaved dog.  Which I guess is really a reflection on us.  Beloved also has a thing for bags.  It’s why he bought me a new backpack even though there is nothing wrong with my current one.  See?  The dog gets it from him.  Not that he sticks his nose, hands or body in visitors’ bags, but you get the idea.

Inside and Outside The View Is Perfect

I don’t, as a rule, edit Beloved’s work, just as he doesn’t typically edit mine either.  However today was not a typical day and thus rules were meant to be broken.  As in, today, I found myself reading his work.  Two hundred pages to be exact, to be read and changes suggested if required.  Which meant that while he was out and about, I was home reading his work.

He leans towards a case of florid verbal copy with a more verbose vocabulary.  In other words there are times when I need to grab the thesaurus and dictionary on top on of the reference books I need to ensure he has it all set out correctly.  So today, while he went shopping for food stuff, I curled up with his words and the appropriate supporting materials.

Time passed by without me even noticing it passage.  When he left to go shopping, I got myself set up.  When he came home, I barely registered his arrival.  I was in the midst of reading a rather large passage of filled with interesting points.  To be honest, I really only acknowledged the passage of time he insisted that I stop for something to eat.  Right after that break, I went back to finish the work I had started.

The next thing I knew he was standing beside me, the four-footed one under his arm and a cup of coffee from one of my favorite coffee places.  A quick glance at the clock let me know that a solid three hours had passed and I hadn’t even gotten up from the chair once.  I had a few pages left, so I took the coffee and watched him walk over to the window seat with the dog.  The two of them curled up to watch the city before them.  And I, well, I finished reading and noting things.

When I was finished, I stood up and stretched.  Then I stretched a bit more before walking over to the two on the window seat.  Apparently the city was boring as the two of them were fast asleep so I carefully sat down near them to finish my coffee and not get bored by the view, both inside and outside.


He finished cleaning up the small shards of glass while I sat down trying to figure out what I was going to do.  We were down to three glasses, five plates and three bowls.  Yeah I had a day of dropping stuff.  He never said anything as he cleaned up after me, he never said a word.

I was sitting there staring at the hands that betrayed me, thinking that if he had stocks in crockery we’d be good to go.  But he doesn’t.  Of course I was also wondering what else I would drop, break or destroy.  I was beginning to think I could change my name to the Queen of Carnage.  And at this rate, Beloved might just want to stay on his hands and his knees.

The fact is, there are days I can’t win for losing.  And breaking. And just basically lurching from one disaster to another. I’m not sure that he signed up for this.  Heaven knows I didn’t.  It’s not like I stood in a line up and asked for lupus, or all the fun things that come along with it.

Every time I think I have a handle on things, I drop it.  And every time, regardless of my anger, rage, frustration and disgust, he calmly comes in and cleans it up.  He is a kind man, this man who seems to spend a large part of his time cleaning up after me.  He will say things like, “I never liked that glass anyway”, or “it is getting time for new dishes, I was getting bored with these”.

Life with lupus, heck living with someone who has lupus, is a bit like a broken plate at times.  You can see how the pieces should go together.  You can even fit them back in place, but they are still damaged and unable to carry the weight they once did.  A small part of me wonders if at some point he won’t throw me out and keep the dishes! 🙂

Different Dance With The Same Steps

Beloved works odd hours.  Mostly because he works more than one job.  These odd hours leads to some interesting obstacles when it comes to meal planning, not to mention other logistics.

We try to do mass cooking when he’s around.  And by we I mean him.  He tries to sort out several meals that can keep for a few days.  He also tries to “repurpose” meat etc. so he can make multiple meals after.  As for me, I tend to pass judgment on what he is planning.  (In fairness, he is the better cook out of the two of us and he’s not a fan of my creations for the most part.)

The problem with this approach is finding storage room for everything.  And once we get past that hurdle, the next big hurdle he faces is actually eating the food days later.  Because what sounded delicious on Sunday is totally not what he wants on Tuesday.  So he kind of hastily eats it on Tuesday and then lists after something more tasteful that day.

Enter a quick stop for more than coffee, such as a package of nuts or cake if the mood strikes.  And sometimes, if the disappointment was large enough, it becomes a package of nuts and cake.  Or maybe two pieces of cake. At which point he arrives home between occupations and bemoans his food choice.

And around and around we go with this.  I’m not much better in that I tend to not be a fan of leftovers.  So this means he is stuck with his food that seemed brilliant only days before.  But each week we do this same dance.  And each week he swears it will be different.