Wrapped In Rules

I’m not the best at following all the rules.  There is a part of me that just has to see what it is that happens when you tell me not to,do something.  However with this burn to my right hand, I have yet to peek at the hand through my own doing.  I’ve seen it each day as the nurse has removed the mummy bandages.

I’ve seen it as the doctor looks at it and treats it and I watch it get recovered in all the wrapping again.  And through this all, I expect something to suddenly show it’s healing because I’m following all the rules.  I’ve kept my hand dry.  I’ve let Beloved help with my hair, makeup and anything else I need help with.

Alas it doesn’t show much healing.  The doctor assures me that good things are happening, but I don’t see it.  Of course my lupus has decided to respond to the burns as well.  Not only are they treating my burnt hand, but they are treating lupus too.  And sometimes those two things don’t work well together.

So when I causally mentioned I could still feel a burning sensation in my hand, he told me that may be lupus.  He wanted my specialist to come and look.  He insisted on running labs.  And all the while I wondered how this could be, since I was following the rules.

For the record the lupus specialist said things are turning a corner and to just continue what we are doing, but to increase one of my meds.  And all I can think of is if I hadn’t followed the rules, would things really be any worse?

Beloved has gotten rather good with hair and makeup.  He has figured out how,to,prepare meals that are wrong hand friendly.  We both had a good laugh at me trying to eat spaghetti with my left hand when I right-handed.  And I’ve gotten rather comfortable with my mummy style wrapped hand.


Lupus Complicates Again

Today, as they were unwrapping my hand to tend to it, I wondered how much longer I’d be making these daily trips.  The nurse unwrapped it, made a face and headed off to grab a doctor.  Nothing unusual other than the face making, but not completely unexpected either.  The blisters had not changed from ugly duckling to beautiful swan.

The doctor who came in did not bother with my chart, instead he asked me what had happened.  He gently looked at my hand, asked about my medications and lupus.  He told me the oozing blisters should have started to heal by now, in fact the skin was splitting further.

He had decided we would try different treatment, still daily visits on my part, and yes still the mummy wrapping on my hand.  He also insisted that we get in touch with my lupus specialist.  So while the nurse was cleaning and treating the mess of my hand, the doctor got on the phone.  I sat waiting and Beloved, who doesn’t do gross, paced in a hallway.  He would pace for close to an hour while my hand was treated, the doctor had a consulate tin with a lupus specialist and my ha d was rewrapped.

Beloved would pace while we sat in the doctor’s  office listening to what he had to say after his conversation with the specialist.  And he’d pace more once we were home.  If pacing fixed things, Beloved managed to fix a lot with his pacing today.  And I, well, I was reminded again that lupus complicates things, including third degree burns.

Making Up A Surprise

Beloved is a man of surprises.  Not only can he do my hair in lovely ways (yet again today he patiently did my hair, this from a man who eschews to own a comb), but if you want a nice, steady eyeliner applied, he’s your man.

To be fair he did have to be told how and when to apply it, but after listening and watching YouTube, he decided to try and help me with my makeup.  I suspect a wee disaster on the vanity may have resulted in this urgency as my makeup powder which went everywhere did not want to cleanup up easily.  He ended up cleaning it while he muttered under his breath.

When I came back from a fresh go around of mummy wrappings on my burned right hand, he settled me down with a book while he disappeared.  Evidently to watch YouTube.  So he could learn how to help apply my makeup.  Of course he has no clue what I wear or when I opt to wear it, but he had ideas.

He decided I needed an elegantly lined eye to go with a subtle smokey eye.  He struggled to get the blush just so given the effort involved in removing a lupus rash via makeup.  All in all it wasn’t bad, but he may need to revisit the art of lining lips as he got a bit weird with that.

Lending A Hand

I’m not a left-handed girl naturally.  It isn’t that I have something against my left hand, it is rather a case of being one of the many folks who happen to have a dominate right hand.  That’s just the way I am.

Recently though, I’ve had to learn to make dI with my left hand.  On account of my right hand met heat.  Searing, burning heat.  From the oven.  Enough of an issue to require medical intervention.  End result, oddles of medication and such applied to oozing blisters and my right hand now resembles a wrapped mummy hand.  Which hurts at the slightest movement or touch.

Evidently mummy hands aren’t meant to get wet.  Nope, it must remain dry.  Which has resulted in interesting gloves and wraps.  And a whole new way to adjust doing things.  In some cases it has meant not doing things, like elaborate hair or precise  eyeliner.

Thankfully, Beloved has two perfectly fine hands.  Hands that can wash dishes and slice fruit.  Hands that can make pastry and wring out damp clothes.  Even more lovely is how he just doesn’t mind either.  He just pops up to lend a helping hand with no questions asked.  I’m truly grateful for all of this, I really am.  But I’d rather he not feel the need to cut all my food for me right now.  I mean some food can be managed by a fork, even if it is being held with an unwieldy left hand.

Hairy Situations

Today I discovered that despite having short hair which only requires finger combing, Beloved can actually style hair.  I know because he had to do mine.  We had an event to attend.  A fancy dress event.  With my dominate hand all wrapped up like a mummy from a dreadful burn, I had to get creative with fastening up clothes and such.  Well that or ask for help!

When it was time to attempt to do something with my hair, a Beloved pointed to a chair.  He grabbed styling items and brushes.  He collected spray and combs.  And he got to work.  Carefully drying it, curling it, brushing it and setting it with spray.  He teased it here, gently tugged it there.  He frowned and fretted as he worked.  And when he was done he sprayed it lightly so it would hold.

Carefully he turned me to face the mirror.  I had visions of poodle curls and Heaven knows what else.  But when I looked, he had done a lovely job, better than I could do.  He should do my hair more often, although I wonder how and when he acqured his skills.  (For the record I asked, but he just smiled and fastened my necklace.)

Happy Samples

Beloved was up to his eyeballs in apples.  Well okay not really up to his eyeballs, it just seemed at way since he was cleaning and cutting them for baking and freezing.  Me, well let’s just say I was supervising.  And doing some minor quality control sampling.

A few days earlier he had been doing a host of baking with plums.  And when he walked in earlier today with two boxes of peaches I was tickled pink.  I may have a thing for peaches.  I also have lupus, which is flaring up something dreadful and therefore I’m sort of out action.   Other than sampling.  For quality of course!

If you were to listen to him, Beloved would have you believe that he was suffering something awful as he worked his way through the apples.  But the truth is, he loves it.  He loves to bake and cook.  And he enjoys sharing his end results, even if they turn out to be less than stellar.  Not that this happens all that often.

So up to his eyeballs in apples really isn’t the torture you might think he was experiencing.  As a matter of fact, he was in his place of happiness, and I knew it based on his singing opera as he worked.  And I was in my happy place watching him be happy.  And sampling of course!

Comfortable Spaces

The four-footed one has taken to sleeping in front of the oven these days.  It started out with her deciding that was the safe place to rest while I was working in the kitchen.  She also discovered that sometimes food can be found on the floor there.  And let’s face it, a comfy place to rest where food can be easily had isn’t a bad place at all.

So naturally she spent part of the day sleeping there while I was busy cooking.  And naturally she felt the need to cozy right up to the oven when it’s turned up rather high.    Which lead to me wondering how I could access the oven without having her come around out of interest.  I’d prefer her to be nowhere near the oven when it’s turned on because I can easily see her trying to get into the oven to catch a taste of things.

I don’t want to see her hurt and to be honest I do not want roast dog either.  And yes I know technically if she never found food there the likelihood of her being there all the time is minor.  But I’m not always the neatest of cooks, thus if she comes by while I’m putting something aside to cool, she is fast, especially when it comes to food.

Of Fluff And Stuff

The four-footed one has discovered a whole new world, or rather one she has always chosen to ignore in the past. She discovered the insane world of fluff. No, I’m not joking. She has discovered fluff from clothing, fluff from various plants dispersing their seeds and fluff I cannot identify.

You see I’m not expert on fluff. I can figure some of it out, like when the dandelions are ready to set their seeds free in that lovely puff that was so fun to blow on when I was little. Of course, that same fluffy head of seeds was the bane of my father’s green grass while I was growing up. It didn’t help that I felt it was my job to help the seeds travel as far as possible into the green lawn.

And fluff from various colored clothing is relatively easy to understand and identify. And let’s face it, everyone has had the joys of sock fluff here and there.

But some of the fluff the four-footed one has now discovered is stuff I just don’t know. I suspect that if I were to look at more closely I might gather an idea as to where it came from. The trick is to spot it before the four-footed one does. And then not only does one have to spot if first, one must also then collect it before she does. With her tongue. You see she likes to investigate based on the theory that everything can be identified and categorized rather simply: it’s either food or it is not food. And because she is food motivated, it’s a bit more of a challenge than it sounds like it should be!


How do you get through each day when it takes all you have to drag yourself out of bed, sorted out for work and off to work? How do you get through each day when it takes everything you have to work and get back home again? What keeps you going?

These are questions I struggle with because when you have lupus, you tend to have an energy issue. You also have pain issues, possibly rash issues, physical limitations and a whole host of other fun things. But you have a fatigue that you cannot even begin to build up enough reserves to power through. Not without paying a huge cost.

Smart people, people who have learned the art of give and take with their illness set time aside each day to rest. These smart people check throughout the day to see how they are feeling and if they need to slow down, reschedule things etc. These people have figured out that since you can’t force more energy upon yourself, you must find another way to manage. These people are not me.

No matter how long I have been paired up with lupus, I still try to push myself into a new level of energy. Theoretically I know this won’t end well. History tells me that the only thing that will result from me pushing so hard is that I will be in worse shape and whatever lupus was doing will somehow turn out much worse. I know all of this. I have lived it multiple times. And still, each time I feel my energy dropping, my go to response is to dig in and fight it until I collapse. Did I mention before I’m not a smart person?

When Beloved or a few close friends are nearby, they will attempt to intervene and insist I rest. Okay Beloved probably has the most pull in this, but still everyone tries. Of course, as Beloved put it last time when we were headed down this path “even a stubborn mule will eventually realize that there is another way to get what it wants. One would think you could have figured this out already.” It isn’t that he is a cruel man. It isn’t that he is giving up. It’s that he knows that he can’t win this. Not when I’m that far down. All he can do is be there when all the pieces fall, and I collapse on the floor. And then, well then, he picks me up ever so carefully. And as he carefully tucks me away he tells me to rest. And much later, when I’ve had some rest, he asks me if the floor and I are having a special relationship that he needs to know about given how many times I fall for the floor.

It doesn’t mean he is right, or that he is somehow smarter than I am. It just means he isn’t going to fight a losing battle. He will let things go the course they will go and then he will deal with the fallout. I’m pretty sure that’s exhausting for him too. At some point he may get tired of the routine and be too exhausted by it all to even bother picking me up anymore. And then, well then maybe he will see the appeal of the floor

Parroting Things

Young children, it would appear, are basically like parrots. Only they can’t fly. They squawk a lot and flap around. Sometimes they make a mess with their food and they aren’t afraid to confront you with what they want. And, well sometimes, they are great mimics.

I forgot all these things until small children seemed to randomly appear in my life again. Having never had one of my own, I have never really had to focus too much on the whole toddler versus parrot routine. And okay so the small children aren’t randomly appearing, they are visiting my neighbor. But still.

I’m struggling with this whole needing to censor myself because little ears and all that. It isn’t that I swear like a drunken sailor who just left port. Although that may explain the whole parrot thing. However, having to be extra careful that small ears are typically attached to small head and body and the small head has a typically loud mouth associated with it. Yeah. I don’t think the whole block needed to hear how I like my coffee dark and bitter, a bit like myself. Now imagine that being parroted back in a sing-song small child voice. Yeah you get the picture.

Next time I think I will settle for squawking and flapping.