Tuesday, September 17, 2013

Exiting the Labyrinth

WOOT I can post again!!  I have had two very frustrating days of not being able to post in Blogger at all.  This is the first time I've managed to get in to the edit page without getting an error message.  It's a miracle!  But I digress..  I'll save my Blogger rant for another post.  I have more important things to write about today.

I'm catching glimpses of the exit of the Labyrinth of Records Collection.  I'm getting close.  I can smell it.

I got a call from my treating CFS doc's secretary and a letter is now in the mail to me.  I haven't received it yet so I have no idea of the content but it has been written.  I await its arrival with much anticipation.  I'm curious what he has to say.  I upset him greatly with my detailed symptom description.  He somehow didn't comprehend the extent of my daily living situation.  Even though I see him several times a year and he knows more about this illness than most of my providers he was still shocked at how disabled I really am and how little I can do.

I had a volley of emails with the world famous CFS doc's assistant and it turns out that due to the restrictions placed on his grant he has to follow the CDC's 2004 definition of CFS which includes the obesity exclusion even though it is dumb as shit (the exclusion/CDC not the doc or the grant).  So I don't get an edited version of his letter but I have to write a disclaimer to attach to his letter and I have to download an up to date version of the CDC's definition of CFS.  More work for me.  Yay.  NOT!

I received a bill from each of the two hospitals that haven't produced my records yet.  Yup, I have to pay for the copies before they will send them to me.  This is now five weeks past the initial contact.  I even looked up HIPAA regulations on this matter and the law states that they have to produce the records within a "reasonable" time period which is 2-3 weeks and no more than 30 days.  If the records are stored off site, then they can take up to 60 days but they have to notify you in writing that this is going to take a while.  With both hospitals, the bills were my first contact with them and those were well over the 30 day limit.  Now that I've paid them for the copies I still have no idea when my records will actually show up.

Like I said I can see the exit in the distance but I'm not quite there yet.  I'm collecting a fresh set of papers on my dining room table.  Just waiting for the stragglers before I can put together the final packet of info for the LTD Ins. Co.  Soon.  Really soon.


  1. welcome back!
    It may seem obvious, but did you try different browsers? I was trying to get my mom set up on Blogger a few weeks ago and it was giving us all kinds of issues. I wasn't sure if it was her computer or what, then I finally had a thought of trying a different browser. Evidently Blogger (google) doesn't like Microsoft. Go figure!

  2. Yay! The end is near! Hopefully the hospitals will send you your records soon!
    Gentle Hugs,