The Toes Have It

Who knew an elipitcal machine would equal toe pain?  Sore thighs?   Was read for that deep yet good ache of using muscles, such as those in my thighs.  Knees feeling creaky?  This is almost a given no matter what I do.  I mean you can hear me coming long before you can see me thanks to creaky knees and popping ankles.  Yep I’m my own musical band, of sorts! 😉

Toe pain however had not occurred to me as a side effect of using this machine.  And yet that’s exactly what I’m dealing with.  Sore toes, toes that ache and throb for no good reason at all.  Not toenail pain, just flat-out toe pain.  My medical team, aka the doctor, believes it is from having broken my toes many years ago.  Skiing.

My ever so helpful friends have decided it’s from shoes that are too small, or too big.  So apparently I failed the whole Goldilocks test on my shoes, at least according to these people.  But of course it can’t be the shoes because my toes don’t bother me except when I use the machine.

I’m beginning to think that physical activity and my toes are not meant to be.  Not together at any rate! 😉  Now I’m not about to remove my toes and I’m not yet ready to cease doing anything that uses my toes…aka everything, so perhaps I shall just give up the elipitcal.


How I Found My Super Power

Beloved decided he wanted to have “relaxing” day.  Well actually what he initially said was he wanted a day in bed or something similar.  To him this seems like a heavenly way to spend the day.

And this, my friends, is how I learned I do have a very special talent…I have developed the “evil eye” look.  Who knew I had such a super power?  Imagine all the things I can do with this talent, after all it it was apparentky this very look that made Beloved revise his statement to a relaxing day!

I don’t begrudge people relaxation and frankly if a day more or less in bed is your idea of heaven, well so be it.  Given the amount of time lupus has me in a resting state, I can tell you what time of day it is from the bed.  So to me, it’s no my ideal way to spend a day if I don’t have to.

Now spending the day relaxing with someone I enjoy spending time with?  Absolutely heavenly! 😉  Spending some of that time plotting how to use my new super power….awesome!


Toes.  Who knew they were so pivotal in life?  I didn’t, not until I lost mine.  Well okay I didn’t exactly lose them.  Here are still there, attached fur,y to the ends of my feet.  But at the time it seemed like I lost them.

You see in my youth I tried this thing called skiing with a group of people who had done this before.  I on the other hand had not.  Skiing was new to me, so was this awesome thing called a chairlift. Life needs more chairlifts, not because it’s easier to get up the incline, but because of their utter awesomeness!😊

Apparently these people happen to take the whole hill part rather seriously.  I mean it’s called down hill,  the emphasis being on hill.  How hill translates to mountain I’m not sure, but that’s where we ended up.  Which explains the whole chairlift thing.  Oh and the skis?  Rented.  So that takes us up to standing at the top of the world’s largest mountain, on the steepest slope.

Picture this, rented skis that came with poles, what on earth are these things even for? Knees shaking and useless poles abandoned because really other than stabbing implements completely useless to me. Oh and the ritual with wax has been completed and my skis are nice and shiny.  Because that’s what the wax is for isn’t it?

Thankfully I don’t recall the trip down the hill, just the ending which was a bit abrupt.  Which brings us back to the importance of toes.  You see the abrupt ending resulted in some broken toes.  Mine specifically.  And it was then I learned how much I love my toes.

So you’d think that after suffering the horror of toe damage in the past I’d be careful with these precious piggies of mine!  But nope not me.  Maybe it’s blocking out the horror of not being able to walk properly that allowed me to drop a heavy box on my large toe. Which apparently is cracked, not that they do anything for cracks or breaks when it comes to toes!  But it does mean I have some time of creating a new style of walking.

So don’t let the suffering of my toes go in vain friends!  Watch your tootsies!



Appreciating Lessons Via Lupus

A friend watched the movie Everest recently and said it was a “dumb” movie that as far as she can tell was all about poor planning.  She couldn’t fathom how someone could spend their entire bank account for a dream, a dream that basically was a glorified vacation with some serious physical activity.  Further to that she couldn’t understand how a person could spend all that money for a dream that involved risking one’s life.

now I haven’t seen the movie, but I can understand doing anything within your power to fulfill a dream.  For the dream isn’t just realized by climbing the mountain or attempting the climb.  The dream, at least for me, is what happens after you have reached the point.  I believe it is impossible to remain unchanged and that’s the beauty of trying or reaching out to touch a dream.  You simply cannot be exactly the same because to touch a dream, to attempt to touch it, is a bit of magic.

I will be the first to admit my point of view is a bit different.  It is surely altered to a degree by having a serious, chronic illness that is not totally managed at this stage.  You see friends lupus has taught me a few lessons that I may not have fully grasped otherwise. Lupus has taught me the beauty of a challenge, the beauty of being changed by the challenge.  Sure there are bumps and bruises, but it is a lesson learned through experiences that forges us stronger in some ways.  Perhaps a bit of the shiny outer layers is removed from us, but we are truly richer for the experience.

My friend would counter that no one needs or sees the beauty in an experience that results on death.  But death is just an end that we all face at some point.  And there is a romantic strength in dying doing what you love, or reaching for the stars.  Lupus has made me comfortable with mortality.  And by being comfortable with my own mortality I have come to see the beauty and joy in the everyday simple things.  The songs of the birds early in the morning are ever so sweet to my ears.  I love to watch the clouds dance across the sky on a windy day.  The smell of freshly baked bread is a bit like heaven I suspect.  And the list goes on.

To me, as much as lupus can make life a little harder, it also makes the rewards in life sweeter because you know just how precious it all is.  So lupus taught me that well I may face my time with Everest, I will certain be enjoying every minute of it that I can.

Life With Lupus, It Doesn’t Have To Be a Sentence

Life without the possibility of parole.  A sentence that will out live you.  I cannot fathom living imprisoned for the rest of my life.  Nor can I fathom society giving up on me, writing me off as a waste.

I’ve never committed a crime, never been convicted or locked up. And yet I remember when my life felt as though I had been locked up with the key to release me lost forever.  It’s not uncommon to feel abandoned or lost when you receive a medical diagnosis.  When you are young and you receive the news that you have a chronic illness it can be devastating.  It came see as though you are placed in solitary confinement with no hope of getting out.

I was received a sentence of life without lupus.  What I didn’t realize back then is that a sentence of lupus is not a sentence of hopelessness.  It isn’t an end to life.  It may seem that way at first when the doctor provides you with the news.  And it’s okay to feel a little list at first.

But life with lupus isn’t all gloom.  It’s a chance to really consider what’s most important in your life.  It’s a chance to become part of an amazing community of people who are heroes.  You see having a chronic illness like lupus means that doing ordinary things may take extraordinary means or creative ways of making things work.  Sure you may be challenged, and sure there are times when it isn’t all roses, but you still have a life and it can still be full and good.

I try to think of my life with lupus as having a companion all the time.  A companion that requires compromise, insists I consider what’s really important in my life and which dreams I can’t to chase.  This companion of mine reminds me that every day people have to come up with creative ways, new ways, of doing ordinary things.  And is companion offers me a roller coaster ride of emotions, but not without providing me a great community of support.

No one goes through a chronic illness completely alone and if you can remember that, if you can just reach out to those who’ve navigated the winding path of living with lupus already, it’s easier.   Everything is easier when you aren’t in solitary, while you aren’t facing it alone.  And you aren’t alone!  I promise.  Reach out.

Living Lupus Style With Causal Chaos

As a child I had a bit of a chaos theory in the works when it came to cleaning up my room.  I understood, at some level, the need for neat and tidy.  But on another level I just never understood why I had to spend my time tidying up.  I knew where everything was in my piles and I saw beauty in those piles.  My mama would say that the beauty was when the piles were excavated and clean floor was visible!  😉

Somehow ive never lost the inner beauty of the chaos methods.  I seem to thrive on chaos and mess at times.  But controlled chaos and controlled messes.  Perhaps that’s why for me life with lupus is a bit of giving and taking.  It’s a bit chaotic and messy, but I think living life in general is a bit chaotic and messy.  Lupus just adds another dimension to it all! 😉

And so you see friends, when I have piles of books on the table or laundry to be put away it honestly isn’t my fault.  It’s a case of being caught up in the beauty of the moment and rolling with the chaotic waves of lupus!  At least that’s my logic to the situation.

Someone recentky wrote to me asking how I figure leaving things until I have energy to be smart.  The logic this individual presented was if I out away the books or laundry when it was only a small amount it would be less tasking. I don’t argue with this logic.  It works for a lot of people.  It just doesn’t work for me when lupus has siphoned off my energy.

When lupus robs me of my energy, it’s easier to let the piles be and wait until I have energy.  During those times it’s better to marvel at how easy it is and how freeing it is to let go of control and allow moderate chaos to run about.  Moderate chaos isn’t anything I cannot handle.

of course if you’d like to come here and sort out my chaotic life you are welcome to try!

Something Fishy

Fish. Fish, what’s for dinner.  Well some days it is.  I don’t fish now and then, a little if it has a strong fishy flavor or more if it doesn’t.  Oh and it can’t be hatters and deep fired.  I know.  Weird.

So I’m on a quest to find recipes for fish that taste like not fish.  Some recipes a have worked better than others.  Some have been frankly disasters and one was an absolute nightmare.

Land given my luck, it was the utter nightmare that I assured Beloved would be a mostly wonderful meal.  A meal we would enjoy.  Which of course never happened.  And to be honest I should have known better when I went out to gather the ingredients and struggled to find some of them and made multiple trips just to gather everything.  It didn’t help I had to deal with a dead fish looking at me.  Yes friends the fish was bought with its head on.  Who can eat something with its eyes still in the head?  Who can eat with dead eyes staring at them? 😐

So tonight I tried a recipe that used salmon, mango, walnuts, onion, chili peppers, oranges and arugula.  The picture looked so promising.  The meal was so not what the picture promised and tasted not so good.  I’m not saying it’s the recipes fault, I may very well have screwed it up.  But we won’t be trying it again any time soon.

The dogs will be sorely disappointed as they love fish and know when I get fish for humans, the dogs get their own fish.  So for their sake I must find a really good recipe so there is more fish in the house!