#69 - Anniversary

Wednesday, May 28, 2003, was my last official day of work at the mental health clinic.

Two days later I received a call from a nurse stating that my skin biopsy tested positive for lupus. I received the call the morning of my farewell luncheon at work.

I never showed up to the party... I couldn't stop sobbing.

I was too embarrassed to have my colleagues see me so upset.

It took another two weeks for my rheumatologist to read the report and verify that I have systemic lupus.

I found out via the telephone.

I left behind a career that I had a passion for. That is a rare gift, to be able to wake up in the morning and look forward to going in to the office.
My job was very stressful, but never dull.

I woke up this morning dreading the day ahead of me.

I have to clean out the frig.

I have to fold laundry.

Instead, I have been sitting on the couch with a cup of lukewarm coffee, as I tried to swallow all of the medications that are supposed to keep the lupus at bay, and cried while watching ER reruns.

It is noon and I am already exhausted. The migraine is nibbling around the edges, and I know that any attempts at cleaning today will make the pain and fatigue worse.

New symptoms this morning, some facial spasms... yippee... one more thing.

I miss my job.

I miss the people who came to see me for help.

I miss the frustrations, the stacks of paperwork, the phone calls, the failures and the successes, the hard earned smiles from people who thought life was hopeless, and the tears shed as the healing journeys began day after day, week after week, year after year... I miss it all.

I miss being witness to other people's triumphs.

I miss the sticky fingered hugs from the little guys, the kids who practically bounced off of the walls from hyperactivity, the silent rages of the angry kids who were really just fronting a big hurt inside.

I miss the sad parents, the angry parents, the tired parents, the missing parents and all of the other adults who came in who for all intents and purposes were parents... even when there was no blood connection.

I miss the boring meetings... okay!!

I don't miss meetings.

Phew... I thought I was going to lose it for a moment.

This month is my three year anniversary.


In three years, I have:

* watched my son start school
* watched my husband become more wonderful than he already was
* taken in two cats
* written at least 10 blogs (I lost count)
* read commentaries on the radio
* lost friends because they could not cope with me being ill
* gained friends because they like me even though I am ill
* watched my best friend die
* gone on antimalarials, oral chemotherapy, steroids, antidepressants, muscle relaxants used for MS, NSAIDs, and painkillers
* watched my hair thin out and my eye lashes falling out
* lose 12 lbs., gain 10 lbs.
* forget the names of people I know, and details they have shared
* embarrassed myself a kerjillion times when I have tried to act like the "old me"
* slid into middle age
* cried a river
* and laughed at myself countless times

As I have said before, I am not the poster child for bearing up bravely while under duress.

I have been living with lupus and kicking and screaming about it practically the whole way.

Oh well.

I have written so much about this lupus mess that I have enough material for a book...

or two...

or more.

That's because I never shut up!

The lupus keeps me from talking very well now... but, somewhere in Divine mercy, I have been allowed to write.

I didn't ask for this.

No way.

This is not fun.

I wake up and I just want to go back to sleep. I want to hide under the covers until this lupus thing just passes.

I am a coward.

But, this thing is not passing me by. And I can not spend the rest of my life waiting for that time when I may be able to go back to my career.

I believe that after three years, I am pretty sure my career is gone.

Right down the tubes with the tens of thousands and thousands of dollars it cost us to get the training to become a social worker.

Bye-bye.

But, here's the secret to happiness for my time being...

I am still a social worker.

Lupus took away my stamina, my short term memory, and my ability to multi-task,

but the knowledge and the experience are still there.

So in three years I have been learning to shift gears.

You have no choice.

You have to adapt or you will fall into despair.

I've been to despair.

It's a really awful crummy place to be.

Take my word on this, don't go there.

Having lupus does not mean your life is over.

I know people with lupus who are in absolutely horrible physical condition, but their hearts are so big... it is overwhelming.

Such small gestures as a little card, or home made gift.

A quick e-mail.

A phone call.

Costs nothing and gives so much.

Life does not end with lupus.

Life changes because of lupus.

That's all.

My life has changed.

Some parts are extremely painful and difficult to visit too often.

But, you want to know something?

There are many ways that my life is BETTER since I was diagnosed with lupus.

Yes...

Better.

I could write a long list of how things are better, but I will spare you all of that.

Here's a suggestion, though.

Every night before you go to sleep.

Count your blessings.

Life is short and terribly unpredictable.

Best grab what lessons lupus has to offer and make an acquaintance with her.

She is a stern teacher.

But, the lessons she has to offer will do you well in this life.

You may never be the same again.

And you will grieve... a lot.

But, now you are a wounded healer. When you see someone who is suffering, you know... you know deep down in your soul just how bad suffering can be.

And with a word, a look, a gentle touch of your hand... you have been graced with the power to help someone else on the journey.

Happy Anniversary, Ms. Lupus...

My enemy.

My teacher.

So tell me, what's next?