#90 - Yes, I Still Have Lupus

I have not written much lately about my personal experiences with lupus.

I guess I just have not felt much like doing that of late.

The limited energy I have has been swirling around creative projects and coping with a family health crisis.

And the best of all is that this is probably been the first summer since Little Bear was two inwhich I have been able to tend to him pretty much full-time.

Of course, I am a drooling idiot by lunchtime, but Little Bear is a forgiving soul and we have new next door neighbors who are his age.

This has turned into a perfect arrangement. The kids take turns bouncing from the Cozy Cottage to the neighbor's house for a six hour stretch most days.

Bear is elated, I get to sit back and watch him being a kid, and the lovely mom of the other kids give me a huge two hour chunk of time mid-afternoon in which I can rest alone.

Regarding Ms. Lupus... she still hangs around here, even though I have told her everyway I know how to go away.

I have a neurologist appointment in about two weeks.

Mabel the migraine monster has taken on such a life of her own that she is here daily.

When she is not making pain, she makes my brain feel like it is being tightly squeezed. She makes vertigo and nausea. She makes it difficult for me to comprehend what is being said to me, and I have grown increasingly exacerbated by trying to carry on a conversation.

The movement disorder stuff has also worsened. I feel like one of those old stop action figures from the black and white films about dinosaurs and King Kong duking it out.

The hope is that I am having side effects from my medications. Although that is a very unpleasant specualtion, the alternatives feel worse to me.

My greatest concern is CNS lupus or "sticky blood" (vasculitis).

Getting hit in the brain with lupus really is a stinker.

It hits at the core of who you are as a person.

I am not my old self.

Oh well, I have grown so accustomed to this that I hardly fret any more.

You just build up this incredible tolerance level for various body things that fall apart when you have lupus.

So when one of us with lupus says, Ow! That hurts!" we are talking MAJOR hurt, not a stubbed toe.

Stubbed toe hurt is just the status quo for many of us.

This morning I actually missed having a good old sick day from work.

Can you belive that?

I have been so ill the past several days, that I definitely never would have gone into the office.

But, I would have gotten better, and returned to work, and had my workmates say, "How you doing? Feel better now?"

You don't get that with lupus.

You don't get to feel the joy of recuperation and a return to health.

Yesterday I toggled between, "Oh Lord, please don't let me throw up," to "Okay now, I can manage the next five minutes, let's see if I can cram some laundry into the washer."

You have to function.

You just can't lay in bed and take sick days.

Because Well days rarely if ever occur.

So you can't go waiting around for that.

Still once in awhile I long for a day of bed rest. Just to curl up under the blankets, watch bad t.v., eat my toast and ginger ale, get horribly pampered, and then pretend that tomorrow I will be all beter and life will go on healthy and happy.

Nope, not healthy here.

But, I am happy.

I met with an astrologer while at the Canyon Ranch Spa.

Please do not ask me "What were you thinking?"

Because I honestly couldn't tell you.

But, she had somethingto share from her personal life that flipped my eyes and mind open like a cork flying out of a bottle.

Her lover was in a car accident that has forced her into life in a wheelchair.

She and her partner went to see a very wise person who is a healer.

Her partner had asked "Why me?"

And this wise person told her, "I can not answer this for you, but here is what you need to do. Write a list of everything in this life that this accident has given you."

Wow.

A Zen moment if ever there was one.

Without lupus, I would never have met so many wonderfully delightful friends from all walks of life.

Without lupus, I would not have discovered that I am a writer.

Without lupus, I would not be spending my summer days, blissfully and crazy in love happy watching my little boy at home.

Without lupus, my family would not be as emotionally close as we have become now.

Without lupus, my heart would not have been broken and poured open as it has now.

Without lupus, I never would have truly begun to understand the depth of human suffering.

Without lupus, I would not have discovered that I can paint with a computer mouse.

Really, the list becomes endless.

Lupus has given me so much.

Most recently, lupus landed me a free trip to Canyon Ranch Spa... because someone read my stuff, liked what they saw and asked me to write some more.

Never in my wildest dreams could I have imagined that.

So, yes, I still have lupus.

I have to see a neurologist in two weeks.

And I will probably be miserable as they screw around with my medications or push me through miserable tests or tsk-tsk away my concerns leaving me feel invalidated and ridiculous.

But as I have said many times before:

"I have lupus... Ms. Lupus does not have me."


RESOURCES: Jess Kielman - Feng Shui, Tarot & Astology, Guided Imagery, Graphology

Basic Feng Shui, Canyon Ranch Feng Shui, Feng Shui Weekly Tips