Powerful Voice

So I'm going to have to tell a bit of a story to get to my point.  Please bear with me.  

I had to change all of my meds (which are all recurring) to mail order Express Scripts several months ago.  It, of course, was a painful experience.  

My annual exam was in September (don't get me started when it should be in July near my actual transplant date).  Everything was fantastic.  I've even increased my bone density- not an easy feat when the meds are trying to drain my bones of everything they've got.  

I saw the doc again in Nov and my spirometry had dipped 1%.  Okay.... First time since going into chronic rejection that my lung capacity is lower with no associated cause.  December's numbers were worse.  My therapist and I did the whole "what has changed" and it dawned on me that I changed a bunch of generic meds back in August when I started Express Scripts.  Most of my meds are tracked by blood, so the levels can be adjusted if the generics are off.  But I realized that my omeprazole had changed (not checked by blood levels).  I'd even called Express Scripts and complained about the taste because it was beyond horrible.  So sorry they said- they only contract with one manufacturer, so what I get is what I get.  Suck it up, buttercup.

I had to (literally) work a drug deal to get my original medication (Thank you Patty!!).  I didn't know that generics only have to be 80-120% of the name brand.  I assumed a tighter requirement.  HA!  Joke's on me.  I called my doc and we increased the dose and immediately scheduled me for a GI exam.  I don't have any room to screw around with dropping lung capacity.  Jeff is getting ready to deploy and I'm starting to stress out that I'm starting the downward spiral of needing oxygen again.  The thought is terrifying.  Not needing oxygen.... but what it means if I need oxygen (another transplant? If I'm lucky?).

We go to the appt, which is running an hour late.  Jeff and I decide to wait.  I need this appt, and I want Jeff to be there.  After 2 hours I am so frustrated and angry and I've already talked to the customer care person and I'm just getting crabbier.  I tell Jeff we need to leave.  I'm in no position to hear anything the doc would say anyway.  The receptionist tells me to leave my number and they'll call me with an appt.  Steam comes out of my ears, my head starts spinning around and I am trying not to cackle hysterically at the idea that they will actually call me.  I tell her there is no way I'm walking out without a scheduled appt and oh by the way, I want the first one of the day.  Grrr.  I don't remember if I actually said Grrr.  I may have!  

As I'm leaving (with my new 0845 appt) the staff asks me to report it because I'm not the only one.  Call in and complain.  They can't change the system if no one is upset.  

For some reason that absolutely fires me up.  Why am I the one who has to call?  What about all the previous people who did nothing and left me screwed with a doc who can't manage his time effectively?  (no- he wasn't called into emergency surgery- that always gets a pass)  Why am I the bitchy, screamy, yelly, pounding my fists and making noise patient?  Why do I have to fight harder and dirtier than everyone else?  

Natalie Cole passed away.  I'm not gonna lie.  I was pretty damn pissed that she, for whatever reasons, was mute on her PH.  Mute when her voice (in so many ways) could possibly have done good for so many people who fight this damn disease.  Mute when she had a platform from which to advocate for the rest of us and she did NOTHING.  Mute when her timing and my timing were close.  Perhaps a new drug could have delayed my need for transplant a few more years (although I'm happy to be where I am- don't get me wrong).  

I am not tactful.  I am awkward.  I am brash.  And not very nice at times.  I can be a mega bitch when I'm being given the run around.  There are other people whose voices would be so much prettier than mine.  So much more refined.  So much more tactful.  But I guess I'm one of the few who is actually using my voice, so it is what it is.  I'm learning to be okay with it.  

I complained about the stupid voice on the Express Scripts message who says "benefishery" instead of "beneficIARY."  And she says it like 10 times in this message I can't skip no matter what button I push.  The lady I told cracked UP.  She was laughing so hard!  She said, you aren't the only one!  How many does it take??????  But for real, though.  How many does it take?  

I get frustrated with fighting and speaking up.  I am constantly pushing sand up a hill.  But if I don't do it, who will?  Most are unwilling to have confrontation, most don't want to deal with conflict.  

I did another spirometry last Friday.  It was actually better than any of my previous tests.  43% lung capacity.  I laughed.  And I blew again to be sure.  

I had a Jewish sorority sister and we were roommates.  Chapter started or ended (who knows) with a prayer.  It always ended with "In Jesus' name we pray."  It bothered her but she was super sweet and not one to complain.  So I spoke up (cuz I ain't super sweet) and asked if we could say "In God's name we pray" instead (I am not religious, so I didn't care if we said "In Snoopy's name we pray" honestly).  And they would try, but habits die hard and it was damn near impossible to get them to stop saying Jesus.  So I gave up after a few attempts.  And we'd laugh a little every time they said Jesus.  And I didn't change anything at all, except that she knew I was willing to say something.  

A friend and blogger (eatingatme.com) posted a message from Elizabeth Gilbert on FB tonight about using your voice.  Please do not be silent.  My story is gritty and long and so ridiculous that no one believes me when I tell them.  My voice is hoarse from constantly speaking up.  I feel like it makes no difference. And maybe I'm not meant to quilt the greatest quilt ever or improve the sluggish bureaucracy of the healthcare system or eradicate depression.  But I'll keep using my voice because it might make a difference.  I have to be true to myself and I just have to believe it's better than doing nothing. 

Thought of the day: PLEASE USE YOUR VOICE.

Dear Ones -

Often when I am out in public doing events, I will get questions from women who want to write their story in the world, but who are still holding themselves back.

"Writing a story" doesn't just mean literally writing a book, by the way — although it often does. To me, "writing a story" means living your life intentionally, independently, brazenly, and out loud.

A lot of women I meet are still afraid to write the story of their lives. They speak of a fear of rejection, a fear of criticism, a fear of backlash, a fear of failure.

What I always say to these women is, "If you can't do it for yourself, please do it for your sisters. Please write your story in the world, for the benefit of other women."

For centuries, women's voices have been silenced. If you are lucky enough to have been born at a moment in history when you can actually speak in public — when you are allowed to actually EXIST in the world as an autonomous human being — please don't remain quiet and small. If the external bonds of oppression have been lifted from you, please don't oppress YOURSELF by staying quiet in the corner, just as your great-great-grandmothers did out of necessity.

If only out of regard and respect to all those generations of intelligent but powerless women before you who had no choice except to remain silent and invisible (and often illiterate) — please use your voice. You will have a bigger and richer life for it. Also, by using your voice in public, you will empower your sisters to feel more confident about using their voices.

Are there consequences for writing your story in the world — for having a public voice? Sure.

Might you be rejected? Yes.

Will you get criticized? Oh, hell yeah.

Is there sometimes a backlash? Yup.

Can you expect to fail? You bet.

Is it still better than being silent in the corner? ABSOLUTELY.

This proverb speaks beautifully about why people whose voices have not traditionally been heard in society (women and minorities and the dispossessed) must write their stories in the world. So please do whatever you can in order to live your life out loud. Please speak up. Please start businesses. Please run for public office. Please launch a non-profit. Please ask for that raise and fight for that promotion. Please acquire property and bank accounts that are in your own name. Please be an activist. Please make books and art and music. Please demand to be seen and heard and respected. Please make some noise in this world.

ONWARD LIONS,
LG