The Day After

 I was going through some of my old writings and found this little gem buried in a personal journal. I had completely forgotten about this. Here is my writing the day after I was diagnosed with Systemic Lupus:


Day #1 – June 24, 2003

Yesterday my rheumatologist called.

I have systemic lupus. I start on an anti-malrial drug this morning called Plaquenil.

I think…
I should be freaking out…
I should be railing and screaming…
asking WHY ME?

But, I don’t do that.

I ask God…
what do You want me to do with this?

What is next?

What am I supposed to learn from this?

And that is where I will start with this Lupus.

The Plaquenil makes me nauseous. The abdominal cramping started an hour after taking the first dose. I sent Little Bear to day care. He doesn’t need to spend the day cooped up in the house with a sick woman hiding in the bathroom.

I call Hubby after he’s only been at work for 5 minutes. How desperate is that?

 I neglect to give him the respite he needs.
 Imagine that…
my husband needing a break from dealing with me…
but, that will have to be my gift to him. 
He’s shouldering more and more everyday.

I need to help lighten his load.

Tonight I’ll make dinner. Tonight, I’ll try hard to do the dishes. I’ll try to play a game with him, or listen or laugh at a video…
it’s so draining. It’s hard with a headache that has already taken on a life of its own.

The headache is the worst.

It rakes through my eyes and stiffens the back of my neck. It screams when I move. It hates the light.

But, it loves the cookies and soup that I fed it.

I spend an hour online writing to others living in the lupus wilderness. I give what I can. I have to stop after an hour…
not enough of me to go around.

I write a list of all those on the board asking for advice, a shoulder to cry on. I pray. And that is what I will continue to do. 
I have their suffering…
I am living it with them…
and I will pray.

And that is where I was at one year, three and a half months ago. 
I stopped writing for a few months. I got silent. I got sad. I had left behind a really promising career, and I was shedding all the layers of my public face... 
layers that had overnight become meaningless.
 I was raw...
wounded...
and so very frightened.
 I lost people in my life at that time who were afraid of my illness, or were just fed up with me because I was changing. I lost people who had no time or patience to walk through the pain with me.


For those of you who are newly diagnosed here is a bit of advice:


Those who greive well, live well.
Give yourself permission to grieve.


Receiving a confirmed diagnosis is like experiencing a death without a funeral.
You have to let go of your old self, and you have to let go of a future that you were certain was going to be yours.


But, that does not mean life is over.


I feel in so many ways, living with lupus has cracked a hard shell I was living in.
 And I feel that my life now is crisper, cleaner, more real than ever before.
I grieved hard, really hard... read my old entries and you can see that. I chose to share the pain in a public way. I felt the urge to find a new voice.


I am sitting here right now with a basket full of pill bottles, all the meds I have to take every morning. I really am in no mood to swallow those pills that keep my body functioning. I have a nasty headache, earache, and neck pain already...
I am really, really tired.


But, you know what?
I am happy.


Yes, I am truly happy.


I love this life.
 I love my family.
I love my friends.
 I love my little messy needing repairs Cozy Cottage.
 I love each day.
I learned this love by meeting so many, many others with lupus.


I think of beautiful friends with lupus and cancer who are hospitalized, who are bed ridden, desperately, life threatening ill... yet, these gentle, loving people  in spite of so much illness  still find the time and energy to drop me a line, send a greeting, offer their heart in friendship.


And I am so humbled.
There is just so much more to do.
I have yet, to even begin to scratch the surface of learning the lessons that lupus has to offer.
It is an exciting journey. A journey that twists and turns full of surprises.
Miracles happen everyday.
And angels walk the earth hiding behind the faces of people we may know.


This is what lupus is teaching me.

Kittens at My Feet

If only we could all be like kittens.

The beauty of their total unbridled energy.

The pure affection that overwhelms me everytime they hop into my lap ready for a round of loving affection...

never apologizing for their needs...

knowing you will love them right back.

The thrill of a fresh saucer of milk.

The awesome ability to fall asleep anywhere and at anytime.

To experience skittering across a kitchen floor, jumping high in the air at a moth, running through the house by hopping from one piece of furniture to the next without their paws ever touching the ground.

These are my lupus babies.


My loneliest moments are spent with them nestled at my feet or curled up beside me when I'm bed-ridden. Their purrs lull me into a relaxed state as my mind sifts through the brain fog and tries to figure out which details of the day were important and which weren't worth the stress.


They love, oh how they love. And they teach me so much about the joys of a wadded up piece of paper and a velour blanket fresh out of the dryer.


It's almost 3pm.

The hardest part of the day for this lupus.

I'm tired, feeling guilty about all the things I planned on doing today and never could do, and lonely missing my guys...

waiting for them to come home from school and work.


It's quiet here.

And I feel a catch in my throat at the realization that the quiet little mews and the sounds of trouncing in the front room are what keep me sane on days like this.

TODAY (July 2011): I am a few months shy of being 8 years removed from when I wrote this first entry. In the three short months between receiving the confirmed diagnosis of lupus and the writing of this blog entry, my life as I had known it was gone. I was too ill to continue working, I had to file for disability, debts were piling up, and the disease was severely impeding my cognitive abilities. I felt like a pill pin cushion as different drugs were tried out. I had emergency room runs, and became increasingly isolated as people around me either jumped ship or failed to realize how serious my situation was.

I was severely depressed when I wrote this... and completely unaware of how bad it was. 

The cats? 

They are nicely grown up and still my constant companions (along with my dog). And, yes, they certainly carried me through and out of the depression. I would hold them and whisper my pain to them as they purred.  I had to learn to enjoy the beauty of every day simplicity, something that I had completely ignored while buried in my career and well... busy-ness of a stress filled life.