Ageless and Evergreen

Ah, the holiday letter;  I have been averse to writing, even here.  So many thoughts, so much emotion, packed into a couple of stupid weeks.  No matter how well I think I have prepared myself, it always comes up and bites me in the hiney.

This year is no different.  And yet, I like to think that I have made some forward progress.  I have learned many things from being chronically ill:

1. I have to do the things I really want/can do; no more.

2. I have to sleep.

3. Saying, “No” is a good and healthy thing.

4. Family drama helps no one and is to be avoided at all costs.  However, it will happen anyway.

5. Make good memories whenever and wherever you can.  Life will give you plenty of the other kind anyway.

6. You cannot please everyone, all the time.

7. Listen to what my body is trying to tell me, even if it is inconvenient.

Numbers 4 and 7 are particularly hard for me.  I would think that with the little bit of family I have left, number 4 would be a shoe in but, nah! Families have a way of becoming complicated and not just because people are  weird, but also due to the fact that having a member who is chronically ill is a burden on the whole family.  And, this is where number 7 comes in.  I have to listen to my body’s signals, which I am far better at doing now than a few years ago, even when they are horribly inconvenient.  By doing this, I have so far managed to stay out of the ER and hospital for a few months.

But, I have been told, quite clearly ,by my family, that my illness is the family dysfunction.  I think I knew that.  But, it is very, very hard to hear.  So, when there is drama, it is often created by me ignoring rule number 7.

That makes it kind of complicated.  Because, sometimes I literally cannot hear what my body is saying to me or it sneaks up on me.

Or, more commonly, I will get a rash all over and not even know it that is a symptom of fatigue: or, is it? It could be a new drug allergy or a flare or part of a virus or an infection of some sort.

I don’t always get simple 1+1=2  signals.  Things pile up on me.  I feel like a blade of grass that is fine with some rain and some cold and a light frost but when the temperature dives one too many times and I keep getting trammeled by the dogs and god-knows-what bugs are living in my roots; I start to fail.

That does not mean I can’t be brought back around with the right weed killer and some sunshine and water:  I can.

I am hearty after all. I am unbelievably resilient for a girl who was told all of her life that she was a weakling, that she was a just too big a whiner.


The crap I have been through and go through continually (and those of you who share these lovely things will agree) is most definitely not for whiners.

Because if you chose the path of self pity, you will die and yet continue to live.

It is better to try and learn the rules that govern this new world you find yourself in; even during the damned expectation- filled holidays.

You let go of stuff you don’t need.

You rest a lot.

You try to not get stressed by anything or anyone.

You let go of more stuff.

You rest more.

And then, things still go awry.

That is hard, hard, hard reality to accept.  But, we have no choice.  We have to choose to live ahead and not behind. And this is a reality for everyone, not just the chronically ill: The holidays are never made up of perfect vignettes designed by Hallmark.   (Besides, those are scary looking:)

I chose to live like the St. Augustine grass in my central Texas yard: I suck down water and pesticide and all kinds of nasty things to stay alive, but I always, always come back:

Ageless and Evergreen.

Just like the song….




Powerless to Overcome

If any of you have experience with the 12 steps, and I do, you will recognize the three words in that title.

If not, good for you.  For me, it has been echoing through my addled little brain for the last 24 hours.   (I will self reveal and tell you I was a member of OA , Overeater’s Anonymous, for many years and that it is an amazing group.)

What does the word, “powerless” actually mean?  It means I have no way to act on my own behalf.

I don’t even think G–d can help me on this one.  Not unless he can make the bureaucracy that runs health insurance and the murky depths of Cobra and Human Resources and who-knows-what- run faster.  Somehow I think the Divine would get put on hold too.

But, I would like to see that.

Anyway, let me explain.  We are currently ‘between’ insurance policies in the sense that Stan’s former company does not pay our premium so we had to pay it ourselves, which by law, is our right.  As of January 1, 2015, his new company will add us on to their insurance.

So, we were allowed to write two checks, totalling around 2k, to a third party that pays our insurance to our current carrier so there is no lapse in care.  This is a big deal if you are me.

My weekly infusions cost thousands of dollars.

So, all of our medical stuff has been proceeding a pace.  I have been to the doctor, the kids have been, and we have picked up prescriptions.  Everything is all good.

But, when I called to re-order my home infusion supplies, they suddenly had no record of our checks, nor were they ‘allowed’ to send us my medicine.

I thought that was kinda ironic and pointed that out to as many people I could get on the line at the insurance company.

Guess what? They didn’t care!

So down the rabbit hole I went.  Four hours later I emerged with the number, e-mail and fax number of a federal government advocate that runs interference on this kind of thing.  This nice person informed me that Stan’s former employer had not done their job in sending on some sort of paper work.  She would start there and then untangle my mess.

I faxed all the pertinent information I could find and she (my rep) called Human Resources at the old company.  As of Friday, they had not responded.

The next step is that they get a letter from the feds.  She promised me they will respond, because they have to.  It just may take a while.

In the meantime, with each day I have no medication, I run a fever and my fatigue and pain level ratchet up.  But, I cannot really explain that to my family.  No one who doesn’t have this stupid disease can quite get it.

I understand that, I really do.

So, I march forward and do the best I can.

But I feel more powerless than ever.

What will happen?  When will I get my meds?  Will I get really sick?  Why am I running a fever all the time?

Why do I feel like a boa constrictor is squeezing the life out of me?  Is that all about the infusion meds or something deeper?

Possibly something deeper that I won’t share here.  But again, I feel powerless to overcome.

I am trying desperately to remember what it is you are supposed to do in the 12 steps to overcome powerlessness.

Ah, I know: turn it over to a power greater than yourself. Admit you cannot control these things and let go of them by asking a higher power for help.

Okay then, I keep thinking the higher power is not happy with me these days either.  I guess that is sort of stupid.  It doesn’t even jive with my own theology.

I believe in G–d.  I pray.  I just have had trouble believing lately that my personal troubles and doings are of any interest to Him/Her.

I am powerless to overcome.  Powerless to overcome so many things in my life.  This struggle over my most basic of needs, my infusion meds, is symbolic.

Life is full of struggles, of powerlessness, for all of us.  How we deal with it is what makes us who we are.  I believe that.

Certainly, Judaism, is a story of powerlessness and a struggle for understanding how G–d can chose a people and then let them suffer so much. Yet, I know we are not abandoned.

I know this in my head.  We are here to learn.

I just can’t accept it in my heart most days.

Today I will practice acceptance, but not hopelessness in the face of being powerless.

No.  I am here to learn.

I have not been abandoned.  But I am alive in this imperfect and messed up world.  I have to take whatever it throws my way.