TURNING ANGST AND ANGER INTO ADVOCACY

My mom is fine.

I am fine.

There are other things happening in my life that are not fine.  Indeed, they are what some might call a pretty big deal.  As much as I'd like to share, it's not my story to tell.  I can, in good conscious, only share that part of the story which is mine to tell.

I've been on advocate overload.  It had been building for several days and it crashed all around me with a thundering crescendo on Wednesday morning.  Since then, I've been in the medical maze.  Doctors, administrators, social workers, nurses, one hospital system and then another.

Today, a plan is in place. Everything should be resolved in a fashion that is both acceptable and beneficial to meet the needs of the person who is at the center of this, The Patient.  It may be easier said than done although as of 4PM yesterday, it seems the right people are now in the loop.  The operative word here is SHOULD.

You know how those plan things go.  We make plans and somehow life gets in the way..... or to repeat a quote I've heard many times over the course of the years, "We make plans and God laughs."  Whether you believe in God or not, I think we can all agree, when our plans are made, unless we are fully in control without requiring anyone else's participation, plans go awry.  Thus, God laughs or the stars mock us or karma takes over or, quite frankly, Shit Happens.  If things derail at any point, I will be back on my soapbox demanding action and holding every person accountable to carry out that which is within their control, that which I was assured would be handled.

Interestingly, my greatest ally and the most compassionate, most helpful person in trying to untangle a very complex mess has been the representative from the health insurance company.  Go. Figure.  Technically, since I am not on HIPAA forms, people can only listen.  They can not speak but I was seeking generic advice on how to proceed in this situation.

It is essential to give a shout out to United Healthcare/Oxford.  The woman who took my call never cut me off.  She listened.  JUST LISTENED.  She listened to the entire story without once interrupting me to ask a single question.  She asked her questions when I was finished.  My chemobrain is beyond thankful since I didn't lose my place and forget to mention what might have been an important point.

And then, she asked me if she could make some calls on my behalf.  Instant eye roll on my part except, she continued.... would I mind remaining on the line while she made those calls?  In other words, she was the first person who didn't give me the "I'll call you back."  She was the first person who was going to get me answers before concluding the call.  And she delivered.  

After a number of bald faced lies, half truths, misinformation, haughty "I'm in charge now" doctors, the latter of which pushed me RIGHT over the edge, I fully detached all emotion.  I leaped into full action mode when Dr. Haughty replied to my question about which hospital department handles issues regarding best interests of THE PATIENT with this statement, "No such department exists in this hospital."

Within FIVE minutes I was on the phone with a hospital advocate who was trying to prevent me from lodging a formal complaint.  I allowed the representative to placate me solely out of concern for the patient who was and presently is, still under their care.

What began at 9AM on Wednesday should be brought to an acceptable conclusion before the end of the day.  By 4PM yesterday, after many calls with me leading the line dance, everything is still being controlled by others.  However, if "others" don't do what is expected, "others" will find themselves in a very bad position.

I may only be a blogger.  I may write "Graffiti with punctuation."  But I know how to make sure my graffiti is accurate and is heard by a large number of people.  If my efforts over the past 48 hours are not  fruitful today, yes, I will be kicking ass and taking names.  WAIT.... I already have all the names.

Don't cross me.  I know my rights.  I know the rights of patients.  I understand the responsibility of those within the healthcare system to make certain they, and their representative doctors, administrators, social workers are conducting themselves in a manner that is consistent with those very rights.

To steal a quote penned by William Congreve, recently paraphrased by Katie Couric now further fine-tuned by me....

Hell hath no fury like just one type A woman pissed off at anyone who is deliberately and purposefully thwarting any and all attempts at effective advocacy.

There is a life at the center of this.  One Life.  One Patient.  But that's how we advocate.  One person at the time.  This one's personal.  From anger to advocacy.

The update:

As I was ready to publish, the call arrived.  Everything is resolved.  The next chapter will begin at 1PM.  This better go off without another hitch.  Period.

The lesson:

KNOW your rights and don't ever be afraid to open your mouth.  YOU know what's best, demand it.