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.

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Nailed

I’m not the type of girl to cry over a broken nail normally.  Except today.  When my nail broke down deep while visiting with my favorite vampires, also known as a blood draw.  The poor woman getting set up to draw my blood bumped my hand and my nail broke down deep.  It started to bleed and hurt like heck.  So I cried out in pain and surprise.

To be honest the lady who bumped me with her cart resulting in the broken nail had more tears than I did.  She kept apologizing and saying it was the worst time of year to have this happen, so close to all the parties as such.  There aren’t really any fancy parties this year for me, not with my new medication routine and side effects.

The truth is, I’m breathing a small sigh of relief at not having to go to all the parties.  Of not having to be all made up, hair done and nails just so.  Let’s not even talk about the shoes and clothing that need donning.  And all the energy into getting ready and then faking that I feel cheerful and healthy.

So I did  cry out over a broken nail because of the pain and not because of the hardship it might bring.  And truly if a broken nail brings hardship, life cannot be that bad.

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.

All In The Hands

As he looked at my bluish fingers he shook his head and sighed. My specialist had called me in for a “meeting” after my last wee visit to the hospital. I am loath to go to the hospital and get a sinking feeling every time they tell me I get to “sleep over” because I’m just not that into hospitals. Except I am because I have a chronic illness that doesn’t want to behave.

After my last stay, a follow-up message was sent to my specialist indicating that I had some vascular issues in my hands. Lupus is one of those gifts that just keeps giving and one of the gifts it always provides me with is something known among my friends as corpse hands. To the medical community it is known as Raynaud’s. To me it’s just cold hands for the most part, occasionally brilliant red and sore fingers, but mostly purplish blue and cold fingers.

The doctor who wrote the follow-up message thought that perhaps if my specialist addressed my Raynaud’s (I guess we will move on to using formal words for proper addressing of said entities), I would not have been in the hospital as long while they tried to resolve my cold hands even though I told them that’s just the way things are.

When he looked up my specialist said, “sometimes you pick your battles and other times the battle picks you”. The cold hands aren’t in my head, there is a medical condition for this and there are things that can be done and are being done to try to keep it in check. However, not everything gets tidied up nice and neat at the end of the day. Lupus doesn’t play well with others and so we have to balance all things for the best outcome. Which for me may mean cold hands most of the time.

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.

Ugh

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.