Appearances, Seriously

One of my doctors is away on vacation.  In his place is a substitute or locum to be al technical. I knew this was going to be the case, but still when the locum popped in to “see  how (I) can help”, it was a bit disturbing. Mostly because this doctor is hard to take seriously with his appearance.

He was wearing sparkly shoes, hounds tooth patterned pants in a shade of bright blue and shocking pink, this was then topped by a yellow shirt and finished with a red bow tie,  I mean it didn’t scream out profession, but hey I was only there for a prescription to be written out.

Most locums simply fill out the request and send me on my way.  But not this man.  He told me that I did not look my best.  I could stand a little in brightening up my skin.  He suggested a laser treatment.  And while we are at it, he suggested filling in that line I get by my eyebrows when I frown.  Which I was doing as he prattled on about how I “just don’t look (my) best” and “who doesn’t want to look her best”.

When he filled out the request he handed me a business card for is dermatological and cosmetic services, not that my lupus rash was not all that lovely to look at. Thanks for that, it’s not like I’m unaware of it.  It’s also not like I try to hide it under makeup and such.

Just before I left I asked the receptionist to make a note on my file, one that said if he was filling in for my regular doctor I wanted to see someone else because I have enough to deal with health wise and dont need to be reminded that I don’t look my best.  She nodded and told me I look fine.


What Do You See And Hear

When you hear hoof beats do you start looking for horses or zebras? My medical team seems to think in terms of zebras when it comes to my health, but honestly that isn’t their fault. I am not the easiest person to work with in general and with a messed up immune system to match a slightly sarcastic and cynical view-point it just gets harder. For all I know they may be better off looking for mythical or extinct creatures.

We are, to some degree, a sum of our experiences and dealing with my health issues lead me to believe that I’m a bit like a platypus. Sort of a mishmash of various pieces that don’t seem to go quiet right together and yet somehow it all works in some way. Of course, platypus do not make the sound of hoofbeats, but if you saw just the bill out of the water you’d think it was a large waterfowl, and if you saw their back in the water you might think it was a water mammal of sorts, such as a beaver.

To some degree we are all a zebra and a horse, it just depends upon the situation. Each one of us can be a beaver, a duck or a platypus to different people, we just can’t be a zebra and a platypus at the same time.

Kick Off Your Shoes

At a recent doctor’s appointment, I was invited to “kick off my shoes and stay awhile”.   Now I don’t mind this doctor or his staff, however I’m not really wanting to get comfy in the doctor’s office for what should be a wee visit.  I guess that’s a bit rude of me.

I didn’t kick off my shoes, but I knew I was going to be there awhile regardless of my shoe status.  So I settled in for a long wait and a long visit.  And true to form after a lengthy wait, the doc and I had a long visit.  A long visit with lots of medical terms and numbers.  Not exactly my idea of fun, but a requirement when you have a chronic illness like lupus.

And after my long visit, I went on a longish drive to empty my head.  Because sometimes  when you have a chronic illness like lupus, you need to just empty your head and simply enjoy your surroundings.  A long visit with a four-footed friend is also ideal.

And I promise things will go back into your routine after one of those visits, because it does for me too.  Until the next time I am invited in for a long visit without my shoes.  Which is all part of chronic illness and life.

It’s The Most Tiring Time Of The Year

I was going to stay in bed for a bit today.  I was going to take it easy, do some light work on the computer and rest basically.  I felt good about this plan and the four-footed one was on board.

Within an hour of getting up my plans were derailed. Because in all of my planning for a relaxed day I forgot that I had to go shopping.  Well not shopping so much as picking up an already made purchase.  For someone’s Christmas present.

So quick change of plans and off we were to the store to pick up the aforementioned purchase.  It shouldn’t have been the disaster that it was.  A quick trip and then back home to rest, just as planned and approved by my doctor.

Three hours after heading off to the store I had finally managed to obtain said item. It was an exhausting drive back home and instead of doing any work on the computer I did something I rarely do.  I napped.

I napped for a couple of hours, woke up feeling just as exhausted as I did before my nap and reminded myself, for e coming weeks this could be the norm for me.

Lupus and stress do not get along.  Christmas shopping, preparation and all of the rest of the stuff that goes with it are somewhat stressful for me.  Mostly because I try to find the ideal gifts for people.  Make the cookies and such that please everyone and so on.  The thing is, I just don’t have the energy for everything that I dream of doing.  And today was a reminder that I need to reconsider how I do things or the expectations I set up for myself to ensure everyone has a wonderful holiday.


I had to run some errands today.  Not a big deal, not for most people.  Except I have lupus.  And a cold.  At the same time.  A guarantee for an exhausting time indeed.  So I feel horrible, have achy joints and a sore throat all to go along with running errands.

Now you get a bit of an idea of how I felt and toss into the mix that this time of the year means most stores are busier than normal.  It’s basically a recipe for disaster.  Which is pretty much how I felt as I went around chasing my errands.  And no they weren’t the type of errands that I could do online or leave for another time.

So today wasn’t a super fun time and by the end of errands and such I just wanted to go home and collapse.  Into a heap of me that would not move until I had energy.  That energy level would probably take five years to obtain.  However the four-footed one did not understand any of this.

So I came home, looking to collapse only to find myself playing hide-and-seek with the dog.  Because she insisted.  Insisted with teeth.  Thankfully she got bored early into the game so now I am a happy, yet collapsed shadow of myself.

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.

I’d Rather Be Sleeping

Do you ever have one of those days where you wake up and wonder why you woke up?  Not in a bad or negative sense, but rather one where when you wake up there are a million things that must be dealt with right away and you woke up feeling tired.  That’s the kind of day I was having.

Although it was a few items of less than million items I said above.  Okay fine, since you asked nicely, it was 6 things that needed to be dealt with all at once.  But those 6 things might just as well have been a million things for the success outcome.  In other words I wasn’t feeling too confident about taking on everything that needed to be dealt with.  Not first thing in the morning.  Not before coffee, copious amounts of coffee by the way.

So I woke up tired, still having nagging pain that should have subsided already and a phone meeting with an insurance company.  Because apparently now the insurance company has received a medical degree, a specialist’s designation at that.  Oh and the insurance company knows for a fact that the two medications that are kind of working at slowing down the progression of lupus really aren’t ideal for me.  As in they will no longer cover the medication.  Because as they informs me in a lovely letter the “medication is not being used entirely as it is intended”.

Fine I get that my medication is in the chemotherapy family, and anti rejection family.  And true right now I do not have an organ transplant, and no I’m currently not fighting cancer.  But and here is the huge but, the meds are what’s keeping lupus at bay.  So in. Way, yes they cost a bit more, but if lupus gets out of control the costs go up.  And since they can’t just uninsured me, one would think they’d use some common sense.

The other stuff I had to deal with was also in line with things of that nature.  And so I would sooner have not had to get up and deal with everything because friends, there are days when the world doesn’t have enough coffee.