Friday, October 8, 2004

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...
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.


klconard1 said...

Loretta dear, my-- what a long way you've come since we first met!  It's a pleasure being your friend and your sister of the heart.
loving you

thebaabee said...

How happy I am that you are my friend......Love you bunches Lu

starstuff45 said...

Honestly, I don't remember how I came across your journal.  I guess it was meant to be.  I'm in the process of the docs trying to decide if I have lupus, RA or if my HepC is active.  They're going more towards the HepC and the RA.  Either way I'm kind of screwed as they can't give me the meds for the lupus or RA as it will exaserbate (sp?) the HepC.  They are all horrific, no matter how you look at it.  I'm past feeling sorry for myself or asking "why me" and now into "how do I make this my new normal", if that makes sense.  anyhoo, whichever it turns out to be I'll be checking in with your journal from time to time.  i hope you get thru this OK... i'll remember you in my personal devotions.  drop a line if you need a shoulder, I'm always around :)


Jennifer said...

this is so beautiful.
thank you so much for sharing, it's just what I needed today.
I've been diagnosed for 6 months. And every day is a battle.
I've grieved, denied, cried and demanded "why me????" and kicked and screamed at giving up my old life.

And one day...I started to accept. And it's working. I feel lighter and more open to the joy that this can bring. Getting back to who I used to be before life got in the way---and actually live again.

But then...sometimes days like today come along and I'm so sad and scared all over again. I'm not even 33 years old yet. Is this going to me forever? will I always struggle to make ends meet? ....scary.

But this calmed me and reminded me of all the good.
Thank you so much

Loretta said...

(((((Jennifer))))) Thank you for responding. I am praying for you.

Coping is a grieving process. We go through all the suffering like the death of a loved one. We mourn our "old Life".

And like grief it is very intense. But, there is no funeral... so it goes unrecognized. That's why getting an online support network and person to person support is imperative for us.

Just like grief, it does get easier... but, it never completely goes away. You will have times when the going is smooth, where everything is good. But, there may be times when the grief is triggered. When it happens it may still feel intense and painful, but it will never last as long as the first grieving.

Just stay in the present moment as much as you can.

That is one gift that lupus teaches us.