#32 - Worn Down to a Nubbin

What is a nubbin?

A small piece of coal, an itty bitty remainder of a pencil.

I am worn out to a nubbin.

For the first time since diagnosis, I truly have been bed ridden for an extended period of time.

Yesterday, I could hardly leave the bed because of the leg weakness.

The worst of it is, that I have to work doubly hard to get what little stamina I had to return.

So I pushed myself today... trying to see if I can recharge the old batteries here.

This is not the portrait of the woman I once was.

My days were so full.

Counseling all day, stopping home for a bite to eat and then darting out for rehearsals for this or that show or music adventure.

Now I have to get psyched up to walk into the living room... spending hours contemplating if I can push that vacuum cleaner across the rug.

URGHHH!

A very healthy dose of humility.

I am disorganized and often discombobulated.

The price we pay for lupus.

And I wonder the cost to society... when there is probably a cure just around the corner... without the funding or interest to intervene.

The problem with lupus is that it is considered an "invisible illness":

Ten Resolutions™ - Articles - coping with an invisible illness

We try to put our best foot forward. We try not to complain, we try to the best of our ability to function, but the reality for someone like me is that the lupus is disabling.

I can't grocery shop... the effort is incapacitating. Don't drive... I am an accident waiting to happen. Can't carry on a conversation for more than a few moments. I forget what we were talking about.

We were supposed to be in Toronto two weeks ago, and all plans had to be cancelled because I could not be well enough to even ride in a car, let alone do anything except sleep in the hotel for the duration of the trip.

That really has knocked me down.

You can't see the "shakes" that develop from the grinding fatigue.. unless you are paying very close attention.

You don't see the hair loss, because I have put a lot of effort in covering it up.

The lupus sores may not always be apparent, I have become the master of disguise when in public... learning to hide the lupus sores with strategic make-up, hats and bangs. Long sleeves help too, and long flowing skirts.

We just don't make good "poster children" for a cause.

And thus, we go largely ignored.

We are way too sick to advocate for ourselves or kick up a fuss in Washington DC.

Those close to us are tuckered out too... form caregiving and taking on the extra burdens from things that we used to be able to do for our families and our homes.

Oh... don't get me started.

The pain is wearing me down to a tiny line on the paper.

Pain, pain, pain... no relief... just different levels.

After almost three years of this, I still say to myself, when I feel better I will...

But, the "feeling better" does not come, and it has gotten to the point where waiting for that is long past.

It's been a rough year.

But, exactly who doesn't have a rough year?

Hurricanes, tragedies large scale and personal.

One thing lupus has taught me is that no one is immune to suffering.

And if I am lucky... I guess, at least my personal suffering has a name.

Before diagnosis, I used to call this illness, Pocohontas.

I have absolutely no idea why.

Just goofy that way, I guess.

Life was almost easier with Pocohontas as compared to lupus.

With Pocohontas, there was a ton of hope that this would pass.

Not anymore.

I had signed on for a trial research for chemotherapy for lupus.

The reports are showing one big dose will put you in full remission for at least one year.

I got through the initial stages, did the paperwork, and the telephone interviews... and was abruptly turned down when the researchers learned I have ANA negative lupus. Less than 5% of us have this condition. Many physicians require a positive ANA for a confirmed diagnosis of systemic lupus.

Here's the clincher though... I have a skin biopsy that came back positive for lupus in spades. This is 98% accurate, more accurate than the ANA.

But, I didn't fit the clinical profile for the study.

I am bumming about this larely.

I think I would gladly give up my hair and do some bazooka barfing for a chance to go into full remission.

Just not meant to be.

Instead I slowly poison my body with low dose chemotherapy day after day after day...

And when I have been losing ground like I have been doing since this past summer... I now wonder if I could ever make gains back after all the damage the lupus is doing to me?

So the nubbin has spoken.

I don't know if you can call this ranting depression.

I don't feel sorry for myself.

I don't want to crawl in a corner and hide from the human race.

I fight, fight, fight every day.

Just tired today.

I pray a lot, but, you get soul weary at times.

You just do... it is only human.

So the nubbin has spoken... now back to our usual programming.