I hate having to check myself before I do anything.  It feels oppressive, unfair and wrong.  And yet I do.   Check myself.  I check myself before I comment on how I feel or mention if I’m doing something “normal”, or potential energy consuming.  There is no law, at least not one on the books, that says I need to do this.  But I do.  Because I have lupus.

Trying to get people to understand lupus can feel oppressive or unfair.  Because it takes up precious energy and uses emotions which take up energy and I have lupus.  So it’s oppressive in some way.  But I talk about it, I try to help people understand.  And I feel the weight of responsibility, which can be oppressed.

Trying to balance hanging out with friends, having a vacation and living with lupus can feel oppressive.  But I’m not dead.  I have a job, a life, love and such.  And now and then I feel almost like who I used to be.  So I do things I used to do.  And then feel guilty about this because I have lupus.  And that guilt is very oppressive.  I’m not sure if this again is a self imposed law, but I can’t seem to shake it.  I have guilt because I can do things I know other lupus patients can’t.  I have guilt because just when people sort of understand my lupus, I do something so normal that it’s like I’m saying my lupus isn’t that bad.  I have guilt because friends and loved ones have to deal with the rapid change of lupus and our plans.  And it’s all so oppressive and unfair.

So I check myself.  I edit my actions and words.  I edit my dreams and my choices and I feel the oppression of all of this as well as the weight of being sick.  It’s unfair to those in my life,because I am never able to be completely free.  It’s wrong because I want to be transparent, but I don’t want to create more worry.  So I check myself.  And it feels oppressive and I hate myself for knowing what I’m doing and still doing it.  And yes, I just checked myself again before sending this off.

Shouldering On

Tthere is something to be said about shoulders.  When I was a young child I rode on my father’s shoulders!  One of my favourite places to be and not just for the view!  For some odd reason though, my father had a limit to carrying me this way, weight and height restrictions apparently.

I recall nestling my head, when tired and sick, on a comforting shoulder.  I’m not sure they were super comfortable as per say, but it worked at the time.

My bag went over my shoulders to make carrying my heavy schoolbooks too and fro with out too much issue when I was in school.  I once tried carrying my books in a different bag and everything seemed so much heavier that way.

I’ve unloaded m burdens on Beloved’s shoulders, both figuratively and literally.  I’ve taken refuge from the horrors of the world on Beloved’s shoulders.  I’ve held on to his shoulders when I needed something to grab as I was navigating my way across a strange stone covers landscape.

I’ve felt the weight of adulthood, mortality and fear rest on my shoulders without asking permission first.  I’ve felt pain from the weight and somehow made space and strength to allow Beloved to place his burdens or part of his burdens on my shoulders to.

And I’ve never once stopped to consider how amazing shoulders are, or how I’ve taken for granted how they just carrying on shouldering everything in life.


Tis the season for cookies, cake and chocolates galore.  Tis the season for visiting and outings and so much more.  More as in trying to fit more food into my body.  More as in one more bite, or just a taste of that.

But really more as in can this much more of me fit in these pants?  Because let’s face it, for a lot of us, Tis the season for calories galore.

Sure you promise you will limit your intake.  You will be sensible.  You have ONE piece.  Except you end up at more outings trying more one pieces and suddenly not even sensible works.  You make this discovery as you decide your pants are just not right.

So you decide to avoid th food, sip the drink, finish nothing.  Just a small taste.  Just a wee morsel over your lips.  And somehow, through the magic of this season, every little bit that slips over your lips decides to take up residence in your body, like on your hips.

No fear though, a new year is just around the corner so you can work on getting read of this seasonal stuffs, maybe for good if you are lucky.  Or at least until Tis another season of umm stuff.

Ready, Set, Nibble or What’s Your Favorite

This time of year there are all sorts of lovely breads being baked.  Buns are being made and marked with crosses.  Chocolate comes around in the shape of eggs and bunnies.  All sorts of lovely meals and feasts are planned for loved ones to join around the table.

And for some reason around this time of year I wonder why I always choose this time to try and lose weight.  Perhaps its spring cleaning of sorts, but around Easter I always feel I need to drop the weight.  The weight I gain from my medications.  The weight I have gained from all the time I haven’t been mobile enough to do the whole calorie deficit thing.

The problem is, while I feel a need to lose the weight I also find all sorts of delicious things to sample.  New food is brought forth that must be tried and frequently ends up being devoured rather than savoured.  Unless the food happens to be a chocolate Easter bunny.  Then everything is fine because for some reason I can’t eat them.  Not a nibble on the old ears or a sample of fun the tail.

As for chocolate eggs, I think those are better left for others to find because eating them isn’t my cup of tea either.  Some maybe I will give you all the bunnies and eggs for brad and buns and other delights!

Crosses To Bear or How I Was Told I Had Lupus

A specialist once told me we all have crosses to bear in life. He proceeded to tell me that lupus was my cross to bear just as hair loss was his. Somehow this just didn’t seem fair back then. To be honest it still doesn’t seem fair.

I can appreciate that everyone has his/her own trials and tests in life. And no two people will experience things exactly the same way as perception is a funny thing. We are shaped by our experiences, understanding and interpretation of words, sounds and sights. So it is possible that to this doctor his hair loss was just as traumatic and terrifying to him as hearing I had lupus was to me.

There are days that lupus is a “minor annoyance” in my life. It’s there, but it doesn’t impact my daily life too much. I can manage doing what I want to do without too much concern. Those are the days I understand that my specialist’s comment best.

There are days where lupus is in full control of every outcome. Including will I be able to get out of bed, or what happens if after I’m out of bed I have no more energy? Those are the days I want to march back into the specialists office and show him that this cross is much heavier, much harder to bear than how I perceive his. Of course those are the days I haven’t the energy to actually do anything, but it’s the thought that counts right?

Some else once told me that if I had to choose between my cross to bear versus another person’s I would gladly pick my own up again. I understand part of that in being that we do tend to go back to that which we know. But I’m somewhat certain I could find a way to rock a scarf or custom wig better than how I manage to deal with the fact that some days I just can’t do things.

Does lack of hair make you feel inept? Inadequate? Worthless? I struggle with these words, words I say to myself on the days when I really should be showing the most compassion to myself. I know it’s unfair of me to have this type of self-talk going on, but I suppose I repeat what I have heard said from society in some way or another over all the time of living with lupus.

If I were in the same position as that specialist so long ago, I would hope I would respond with compassion. I hope I would be able to reach out and create an environment where the other person could feel s/he could lay down that cross, if only for a moment, or at least take a rest while we find a way to make things work better.

Granted I know that there are dangers to caring too much, to worrying too much and becoming to close to things. However, in that moment, all those years ago, what I needed to hear most was that yes lupus sucks, and yes we will find a way to work through this. Instead a felt alone, and also somehow responsible for soldiering on as best I could without giving into the exhaustion or pain. In other words, lupus was diminished and it was up to me to carry on trying to appear “normal” because after all we each must carry things that are heavy for us.

Forging Forward With Forgiveness

Forgiveness.  So much is packed behind that one word.  So much emotion, context, confrontation, and so on.  And yet people talk about it, about how freeing or liberating it is.  How it, above all else, allows you to move forward from the past.

We also hear how elusive forgiveness is, almost like a myth, and yet we know others have managed to claim t.  Some have claimed it for huge reasons and others for small reasons.

Some hurts and wrongs can be forgiven and others seem impossible to liberated by forgiveness.  Is it that we are too inclined to hold onto those hurts and wrongs that we are unable to find forgiveness?

Do we clutch our hurts and the wrongs and injustices (real or perceived) done to us so closely because at least then we have a form of armour.  Because we need proof of the wounds we have?  Or do we hold onto them because to let them go means that we accept and are okay with the hurts and injustices?

This journey I am on is forcing me to consider the immaturity of holding onto these things.  And that immaturity does not let me move forward. I also must confess to being tired of carrying all the extra weight around.  So I move forward by forgiving those who have brought injustice to my feet or hurt me in some way.  And I recognize that by moving forward I will be leaving some people behind, which is fine.  Sometimes we have to leave others behind in order to move forward with ourselves.

How is your journey going?

Weighty Subject

When you have an autoimmune illness a lot of times part of the added fun is weight issue.  If they prescribe steroids for you, you are going to put on weight because you end up in a case of hungry-hippo starvation feeling.  So you eat and eat and eat.  Or you and retain water, for the hungry-hippo of course! 😉

Sometimes you eat to get rid of th horrible taste your medication leaves in your mouth.  Or to prevent yourself drin feeling sick (yes I know weird, but true).

Sometimes your illness makes weight loss near impossible.  You work out, you watch what you eat and still you keep the weight on.

And sometimes being with the “normal” people, the ones who can lose weight is a bit much.  Especially the calorie counting ones because despite you counting calories and spending more calories than you eat, you still gain weight. 😐

All around you are skinny people, people who are working on getting skinny or fit and watching what they eat and you just know that the glass of water your drink will add to your weight.  What is a person to do in this situation?

Well you can’t hide from the skinny or fit people, nor can you hide from those people who are counting calories.  All you can do is your best and try not to let those overly happy, weight losing people, get you down.  Especially if your weight gain is from steroids, because at least when you cycle down, you will drop the weight again.

Burdens, Beasts, and Me

Baby donkeys are fuzzy!  They have lovely, large expressive eyes and soft, long ears.  They come with tails that wag, sort of.  As only  donkeys can wag their tails.  In short order, baby donkeys are just among the cutest things you see.  😃

Baby donkeys, according to Beloved, end up growing into their eyes, expressive or others.  Same with their ears.  He swears nine of them wag their tails, just swish them.  Above all else, he claims they grow up to be full-sized donkeys and stop being fuzzy.😔

Baby  donkeys do not belong in the house according to Beloved and he doesn’t wat to hear about miniature donkeys, baby or otherwise.  He also refuses to believe that baby carrots exist for baby donkeys and other baby animals.😮

They are, he claims, beasts of burden and live to carry and haul things for humans.  Evidently they wouldn’t be happy living with us.  Because what could we offer them for burdens other than carrying books, laundry and groceries?

I’m not sure donkeys live to do the heavy work of humans.  I suspect humans simply used them for this kind of work.  Beloved tells me I just dont understand donkeys or such.

I understand burdens.  After all one cannot live life without experiencing burdens.  Burdens of bills, obligations and society.

If one ends up in a partnership then one understands being a beast of burden to some degree.  For there are times Beloved carries my load, and other times I carry his.  It can’t be avoided, Andy to append rather naturally.  Love, after all, requires that we help each other, that we muddle through together.  Love doesn’t see the burden as a chore so much as it is a way on help the person we care about.

I have no need of a donkey to carry my burdens, they are mostly of my own making and doing.  The lifting they involve cannot be done by hooves.  I’d feel guilty about getting the donkey to carry my weight, just as I feel guilty when Beloved carries my burden for me.

I guess what im saying is that humans are beasts of burdens as well.  Yet you never hear anyone say that a human is only happy when s/he is carrying a burden.  Instead you hear how horrible it is for this person to have to carry a burden, or that person having to help with another person’s  burden.  You hear of people being unable to bear a burden life has given them.  Are we really that different from the other beasts on earth?


Bad Days, Coping Our Way

It’s a bad day when you wake up with a headache, discover there is not a single ground of coffee to be found in the house and the weather is less than wonderful.  I hate stumbling out of bed to these beginnings.

Today was one of those days with the added bonus of screaming joint pain.  Between the pain and headache I was feeling nauseous and coffee, which seemed to be the cure was nowhere to be found.  Even worse, I had errands to run, things that I couldn’t leave for another time.

Now normally I’m not a fan of letting Beloved drive on account of the way he drives.  Or maybe it’s a control thing on my part.  At any rate I was feeling bad enough to hand the keys to Beloved and let him drive.  I figured it wouldn’t be too bad if I kept my eyes closed, but when you don’t trust his driving, even closed eyes don’t help.

Somehow I made it through then reminds, he stopped to get a coffee before going to buy stuff for the house and when we got home, he got me settled and headed out with the dog.  But I couldn’t rest, not really.  The pain and throbbing headache were just too much.

I even tried visualizing the pain floating away from my body.  I imagined I had tied it to a balloon and the balloon was now rising and taking the pain away with it.  Sadly all I could visualize was the pain weighing down the balloon  until it landed with a huge thump back into my body.

I’ve worked with people who teach this technique to patients with a variety of pain and for whatever reason I e it been able to get it to work for me.  What does works, strangely enough, is when Beloved reads to me.  Granted it doesn’t take all the pain away, but it works enough to make things livable.  So when he came back with the dog, he put a quilt on the bed, put the dog on that and then settled down beside me to read while the dog pushed his lovely warm weight against my aching knees.  Heaven?  Maybe not, but it sure felt good compared to where I had been earlier.  I guess it’s how we cope with bad days.


This is Heavy Stuff

What is it about travelling that makes your suitcase feel as though  it is full of stones?  Not small stones either, boulders.  Boulders that get heavier by the second.  Not that I have ever packed stones or boulders in my suitcase.  I have packed a few seashells from time to time, but no stones, no rocks and certainly no boulders!

I’m pretty sure there is some sort of magical force at work with the suitcases.  The longer you have to haul the suitcase around, the more times you have to carry the darn thing, the heavier the stones in the suitcase will be.  The trick is that when you go to open the case, there isn’t anything you haven’t packed, not even a small stone.  Nope it is exactly as you packed it and even more strange is that the case suddenly drops back to its normal weight!

You warn others as they carry your case, you want them to know that it will suddenly get heavy and drag on the body.  You know that soon enough the case will do its mysterious thing and then no one will want to help you carry it any more because of the weirdness

Of course there is that wee hung of me cramming as much as I can into the case is perhaps it rebels from being overstuffed.

Surely im not alone with this tricky suitcase!