I have had a really crap couple of weeks with pain and the rest of it. I’ve been in and out of the hospital for a quick 24 hours of hell, spoken down to by doctors, and had lots of nasty tests.
Out of all of this, I have learned some lessons that are hard but are things I had learned before. Apparently I just needed to suffer more to get them down really well:
1. NEVER TELL ANYONE YOU ARE IN PAIN, ESPECIALLY A DOCTOR.
2. NEVER ASK QUESTIONS THAT MAKE THE DOCTOR LOOK LESS IN CHARGE.
3. NEVER CAUSE YOUR FAMILY MORE GRIEF THAN NECESSARY BY BEING A PAIN IN THE ASS PATIENT AND DOING THE ABOVE TWO ITEMS.
4. GET CLOSE UP AND CUDDLY WITH ANXIETY, PANIC, HELPLESSNESS AND SHAME.
5. YOU WON’T DIE JUST BECAUSE YOU FEEL LIKE IT.
6. IT TURNS OUT YOU CAN’T ACTUALLY DROWN IN YOUR OWN TEARS.
7. LIFE DOES NOT ‘OWE’ YOU A BREAK.
8. CHRONIC ILLNESS DOES NOT GET BETTER; IT GETS WORSE.
9. DO YOUR CRYING IN PRIVATE.
10. DON’T PUBLISH THIS KIND OF NEGATIVE SHIT IN A BLOG: WHOOPS.
The Mind Is Willing….
I think any and everyone with a chronic illness or even a fleeting illness is faced with this: We have things we want to go out and do and then all our best laid plans fall through.
It is by no fault of our own that these things happen but they do anyway.
For one reason or the other, our bodies betray us at critical moments.
For me, it seems to happen every damned weekend lately.
I wait all week to have time with my husband and my family and then I spend the time in bed or worse, in ER.
It wears me down and chips away at my soul.
My mind has all sorts of fun and fulfilling things for me to do but my flesh..
This flesh is WEAK.
I have been writing a lot lately about how to come to an equilibrium of loving myself even though I am a spirit housed in this faulty body.
Some days I am more at peace with that than others.
Today is not really a peaceful day. It is not the worst day, but also not peaceful.
I am sitting here and infusing my gammaglobulin, hoping it will give me a burst of energy.
Maybe, I will make it out to brunch with my husband.
I feel like the world’s worst partner most of the time.
It is hard not to.
I don’t mean to whine here. I just feel tired and tired of being sick and I cannot stop wishing for better times.
These last three months or so have been rough.
This is normal for what I have: lots of ups and downs and new symptoms no one understands or can quantify.
I get tired of enumerating them for doctors who shake their heads and look at me like I really do have two heads.
So today I say Mi Shebieberach (prayer for health and healing) for myself and for all of us out there that need it.
Let’s get our hearts and minds in the game. Maybe we can drag our unwilling bodies along for the ride.
As Seen From Here
I write today not from the top of mountain but not from the bottom of a valley either.
I think I am on the soft cleft of a hill. The kind that rolls between a landscape where things look pastoral and bucolic from the outside but if one is to examine them closely, they are teeming with all sorts of creepy crawlies.
Nothing is ever just a simple, sweet, rolling, green.
But, all of that being said, I think I will lie back for the day and try to enjoy it from this less than magnificent perch.
I am learning, albeit slowly, to find a place amongst the creepy crawlies.
After all, I am one of them!
Yesterday, as I had my throat swabbed for strep for the upteenth time this year, I had a sudden visual image of myself sitting there on the exam table with bug antennae sticking up through my hair.
My hair is generally pretty crazy these days anyway. I wonder if anyone would notice my antennae?
I let my mind wander further and could almost physically feel the hard shell of a beetle forming on my back. How useful it would be!
I could fend off my enemies and avoid being crushed by every little thing if I had a hard shell. If I could, I would choose a lilac colored shell with soft colored, orange spots.
My antennae would be pink with sparkles, of course.
Anyone (especially doctors) would know from looking at me that I am exotic.
I wouldn’t have to explain to them that I am different than the rest: that the tests don’t work or that my everything always hurts.
It would be so much easier.
When I am happy, I would give off a scent of lavender and produce bubbles from my antennae.
When in pain or unhappy, I would give off the scent of…. hmmmm…..
I don’t think I should finish that thought.
Anyway.
So today I am looking up at the world from my vantage point; the cleft in the hill.
I realize I am no more than a tiny, albeit exotic bug, but, I can still enjoy whatever is on offer today.
Will a giant called Life smash me with its equally giant and uncaring hiking boot as it strides across my spot?
I hope not.
I hate having to scrape myself back together.
I am running out of glue for my shell and you can really see the fracture lines where I have been put back together if you look closely.
But, Life and its giant hiking boot be damned.
I am going to lie here in all my glory: Fractured and patched, lilac and orange and with my sparkly pink antennae pointed towards the sounds of laughter.
Note from the author:
NO PSYCHOTROPIC MEDICATIONS WERE CONSUMED BEFORE WRITING THIS BLOG!