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.


Fit To Be Tied or Tied In A Fit

He pushed and prodded.  He strummed and rubbed.  And then he basically gave up.  It was, he declared, not wise to continue to try and loosen up the “knot” which he was positive was the result of my painful neck and headache.

I wanted to scream in frustration,  it my head hurt too much.  I wanted to cry in pain, but I needed to ask what he could do now to get me some relief.  I wanted to demand that he get back at this massage thing he is supposedly an expert in because I needed a break from the pain.  Instead I calmly asked questions.  Even thought I already knew the answers.  And at the root of each answer was the one word I am sick of hearing about, not to mention tired of accommodating.  I wanted him to massage lupus out of my body for good instead of telling me that he could do no more now because, well, lupus.

The old thing with lupus, at least for me, is that I need massage to ease some of the pain and get back some of the movement in my body.  But massage cannot happen if lupus is insanely active, which it is far too often.  And after a massage, lupus loves to act up which then means more pain .  Basically it’s the lupus dance, go forward just to have lupus gain the upper hand.  Get a bit of ground back and start to feel more like myself only to have lupus rear back up.

In this case lupus has me tied in knots.  Unfortunately for me, the person untying my knots is too tired to try and remove then anymore right now.  And I’m fit to be tied, so to speak!

One Of Those Some Days

It’s been one of those days.  It started off okay, but quickly became one that was full of too much.  Or maybe it isn’t so much that it was too much as it was a case of me not having enough energy for everything.  Not that it really matters in the end because the results are the same.

The results  can be explained as follows:  pain, frustration, exhaustion and a degree of anger.  And that’s just within myself.  If anyone has to deal with me during one of these days, well I pretty sure their list has my results plus others!

So how does a person with lupus end up with one of these days?  Sometimes this person may overestimate what s/he is capable of doing for that period of time.  Sometimes what s/he thought would go a certain way ends up going a different way.  And sometimes, well sometimes lupus just steps in and has a say in things.

So the person, this person, cannot always change that.  But this person can try and make the best of things where possible. One these days, this person tends to retreat to be on her own and uses the time to read and rest.  Or at least not have to infect other people with the miserable mood that settles upon her.

And some days, sometimes, despite it all, this person ends up with tears down her cheeks.  But tears can be an emotional release which helps too.

Invitation Seasons And Lupus

A friend told me she has several  wedding invitations already for late spring and summer.  Another friend shared that she has a few requests for cabin/lake time as well as beach time.  Beloved also has received invitations for various outings for spring and summer, and like most people he won’t be able to attend all of them so he will have to make choices.

There was a time in my life when I had all these invites as well, however having to miss so many things due to health issues and such the invitations slowly die out.  I don’t blame people for this, I mean at some point you get tired of a certain someone cancelling on you last-minute.  No matter how understanding you are, it gets tiresome.  I understand that.

The thing is, being the person who is always cancelling at the last-minute I also find these last-minute cancellations to be tiring.  I’m tired of not knowing until the very last moment if I will be able to attend a gathering.  Sometimes I lose the energy while I’m getting ready, such as doing my hair or getting dressed.  Other times I wake up and just know I can’t make it.

But as I said, cancelling gets tiring to, as does the whole sense of being isolated.  So often  times I will push myself to go out and deal with the aftermath as needed.  Unfortunately that has meant being short-tempered, snarky and such with friends and loved ones; pain never brings out the best of me.

On one hand it would be better to just stay away from anything that requires an invitation and such for both my sanity and those I care about.  On the other hand no one wants to be ignored.  Except when there are a million wedding and party invitations during the beautiful days of spring and summer!

To The Tips Of My Toe

Toes.  Those little digits on the ends of your feet.  Small little things that have a habit of getting in the way or striking objects. Toes are marvellous things when they are wiggling in the warm sand of a beach.  Toes are wonderful for squishing in mud or letting thick carpet fluff up between them.

Of course we use our toes for walking and balance, but that’s only when you look at them from a practical vantage point.  For some people another practical aspect of toes just happens to be this neat ability to pick items with them.  Kind of like our cousins the monkeys.  And yes some folks can use their toes for climbing trees or rocks.

I don’t normally consider my toes, unless I’ve smacked them into a table leg or put a chair leg on top of one of my toes.  But these days I’m thinking a bit more about my toes because of the four-footed one.  You see she has taken to going for longer walks, specifically in the hillside areas.  My toes are paying the price for her love of adventures during the day.  The price is increased pain, probably from all the times I cracked or broke them in the past.  My toes are not made for hill walking it seems.

At first I thought my toes hurt because of my shoes.  I thought my feet were sliding around and banging into the ends of my shoes, but that doesn’t appear to be the case.  As best the professionals can tell I’m just continuing to make smaller jig saw puzzle pieces with my bones, specifically my toe bones.

When Wishes Worked…How I Wish Things Worked With Lupus

Remember when you could make a wish and somehow it happened to come true? I distinctly recall standing before a fountain with a shiny coin in my hand, the warm sunshine making the water sparkle as I thought about a wish I was going to make. The mere act of throwing the coin into the fountain was the same as a handshake to seal a deal. The fountain got the coin and somehow I’d get my wish. Of course at that age I was young enough to be wishing for cake for a snack or a trip to the zoo or something of that nature. Stuff my parents could handle.

When I was around 15 I made a different wish, much darker and thus no fountain or shiny coin was required. Just a soft whispered wish in the darkness of night with no actual expectation of the magic to work this time, rather a desperate hope that somehow what I wished for would just sort of happen. That wish, so much heavier, was not one my parents would have approved of or even wanted to hear. It was for me and me alone. And it didn’t’ happen because when you wish to make the pain stop in any way possible it lacks action. I remember during this trying time of odd aches and pains and doctors advising my parents that there really wasn’t anything wrong me that then surely there was no use in me saying anything. But did that mean that I was meant to suffer in silence; lost in some strange place of desperation to be believed, to be relived of the pain?

I also recall that somewhere along the journey that is life I asked for odd things for gifts, be it my birthday or Christmas. One year I asked for new knees. Another I asked for new hips. And then there was the period of time I asked to just not be in pain any more. Those gifts never happened. They were beyond the magic of a shiny coin, beyond the whispered desperate hopes that arise to your lips during the dark nights.

Wouldn’t it be nice to just toss a shiny coin back in a fountain and know that somehow, some way, your wish would come true, not matter how small (a slice of cake for example) or large (for lupus to cease to exist) the wish was? If only that option existed, I can think of a few things I’d wish into oblivion and a few more I’d wish to be more of a daily reality. But that place, that special magic, doesn’t exist just yet, so I guess I will just continue to work with my doctors and try to keep lupus mostly in check. Because Beloved doesn’t want to have to don a tutu and try-out for the wish fairy role, even if only to make me laugh.

Lupus My Internal War

“You should feel a nice gentle stretch right there…” she said in a calm and soothing voice. What she should have said is “this is going to hurt like nothing you’ve ever felt before” and followed that up with an evil laugh because that’s more what it was like. But I’m sure she’s a lovely person who got into physiotherapy solely to help other people. I’m sure she’s not into torturing humans; I mean she doesn’t look like the sort of person who would do that. Yes I know, you can’t go by looks.

As she carried on with her routine I wondered why healthy people, sane people for that matter would willingly part with good money to be tortured. It doesn’t’ make sense to me. Torture, by the way, at least according to my insurance company, is not a cheap form of therapy. Surprisingly, the insurance company will pay for the expense because it is more responsible than medical device options. Or perhaps it is because deep down they know it’s torture and so they will part with the money provided they aren’t’ the ones feeling the pain.

When I told a friend I was heading off for physio, basically light stretching and body manipulation she was envious. So envious in fact that she asked me what my doctor wrote in order to get this covered by insurance. I told her he wrote “diagnosis: lupus” and if she wanted that she would have to take all the rest of the things that came with it as well. She said that was a bit extreme for some pampering.

She calls it pampering and I call it pure hell followed by days of slowly recovering. So why go through it if it isn’t relaxing or reliving? Because like so many things with lupus you have to go through discomfort in order to get things into better shape or to protect things for further damage. It isn’t about pampering, a spa day or restorative treatments. It’s literally hell and I get it because in some way this is my body’s internal war and last time I checked, war is hell.  I’m just hoping for a truce soon.