A How To (or not)... the Paperwork

The sweetest joy, the wildest woe is love. What the world really needs is more love and less paperwork. 

-Pearl Bailey

Cheers too that!

I have several reasons I write this blog.  It's therapy for me - a way to get out thoughts.  It's also a way for me to remember what happened in our lives & when things happened.  I'm not a scrapbooker but I do want to remember... so I plan on someday hooking this baby up to a printer & printing out what we did with our time... probably when I am in a nursing home someday & have some free time (& loads of paper - good grief I'm too verbose!!! ;)

I also found that it was a good way to keep our friends and family informed and aware of our prayer needs when we were in "crisis" times.  I didn't want to overload email inboxes or have to repeat myself about difficult circumstances on the phone over and over... so a blog made it easy for people who were interested to find out information... and those who weren't interested didn't have to become annoyed by a full inbox.

I also began writing with the hope that maybe other parents in similar circumstances might be encouraged by how very normal our life is.  I hope that new parents who are facing diagnoses and scary unknowns will see pictures and stories of my kids at the zoo, the beach, museums, swinging in our yard, playing with friends, swimming like fish, throwing fits, eating dinner, etc and see that there is so much "normal."  When I was pregnant and desperately researching whatever I could find to help me understand what life was going to look like for us, I would stay up hours into the night reading blogs... and what I often found was the blogs focused on the differences.  Sometimes (not always, of course) it seemed that many of the blogs I found detailed life centered around a diagnosis - rather than just detailing life that happens to include a diagnosis.  

Our life is not defined by differences.  They are a part of our life and our lives are enriched with their addition but they are just one aspect (albeit in some seasons demanding aspects ;)) of our lives.  I wanted to write a blog that just tells our story - the story of our life... and all of the aspects of that life - both the medical and the difficult conversations about our unique circumstances and the funny things our kids say and do and just life in general.

Also, I hoped to be able to educate others about differences and spread awareness with this blog.  I hope to encourage the few that may actually read this thing to initiate conversations with those they encounter with differences, to teach their kids how to be sensitive to others, and to open their perspectives to how those who are differently abled are still very abled.

So, with that in mind, it occurred to me that there are some "behind the scenes" parts of our life that I haven't blogged about.

(Don't worry - nothing private!)  

I thought I might share some of these over the coming weeks - mostly to help educate and share a part of life with differences that maybe isn't discussed very often.

(And also to hopefully get some new ideas myself!)

So - today's post..

all about the PAPERWORK!

(See - I told you it's not private.  In fact, it's super boring & I advise you to stop reading right now unless you have nothing better to do with the next few minutes.)

Within hours of receiving our initial diagnosis for Will during my pregnancy, I began to fear the paperwork.  I knew that insurance (which I had never given much thought to) was about to make a big appearance in my life.  I was overwhelmed and scared.

A friend of my mom's who had walked beside her teenage son through cancer shared some excellent advice with me about fear and handling insurance companies.  I still have her email she sent.

I naturally googled and searched online but I never encountered much about the paperwork in anyone's blogs.  I knew it must be a big part of life but no one was discussing it it seemed (likely because we hate it so much that who wants to spend more time writing about it.)

So, today, I thought I would share some of how I manage it (or ignore it as the case may be) in the hopes that perhaps if someone who is facing a new diagnosis out there and is also feeling overwhelmed might receive some encouragement or ideas.  Or, perhaps, will learn what not to do!

I am terrible with numbers.  Terrible.  (Today, Will was pretending to be my teacher and working on numbers with me.  Even my three year old has picked up on my inadequacies.  Sigh.) I do not enjoy paperwork.  I am not a terribly organized person.  I love walking through organizational stores and fantasizing about how organized I can be but it's just not my forte.  I would rather play with my kids, sleep, clean toilets, etc than maintain an organizational system.  I'm really good at starting an organizational project... it's the maintenance that gets me.  

Sometimes I think that if I could find someone to pay to organize it all for me and to maintain it and fight the insurance company or the doctor's office or the therapist's office - oh, that would be glorious!  (Are there such people out there?!?!)

My friend Christie mentioned on her blog recently that she wondered if God was teaching her to love paperwork because she has so much.  I had never considered that perspective to be honest.  I would prefer he teach me through suntan oil and the ocean and a good book... or maybe a trip through Europe... aren't there lessons I need to learn doing those things?


I digress.

So, that said... let it be known that we somehow manage and it does not control me.  Granted, there are days that I feel very overwhelmed by it as I fight some battle... but please know that if you are in a similar situation as we are, it doesn't have to take over your life.

(I needed to hear that when I was pregnant.)

When I was pregnant with Will, my mother in law helped me understand our insurance company (she is great with numbers) & I will never forget sitting at her study desk in a red dress (yes, it was a memorable day) while she had the insurance company on the speaker phone.  The agent actually said that "sometimes you just have to muddle your way through it."

It's unfathomable to me that even the agent couldn't answer all of our questions clearly.

I'm sure I cried that day.

Eventually though, with the precious baby in my arms and hormones a little more under control, I began to figure out some systems.

In our marriage, we handle paperwork very differently.  R prefers notebooks.  I prefer manilla file folders.  I used to stick to my methods but then I decided to follow his lead (though some of my notebooks do contain file folders inside them with loose papers - like receipts.)

I keep all my EOB's organized by year in a notebook.  I have to have an organizational system that doesn't control my life.  I spend about one naptime a week working on paperwork/insurance companies, scheduling doctors, etc  I need a system that is accessible and easy - I have no desire to spend any more time than I absolutely have to working on this stuff.

So, the EOB's get hole punched & put in the notebook in chronological order.

Also, our HSA statements go in a notebook.

This is a notebook that has an entire medical textbook printed and placed in it for Ellie's diagnosis.  It's the only medical textbook I have read.

(There is none that I could find for Will's diagnosis.)

i've highlighted and underlined lots & I find it very helpful to take this sometimes to big doctor appointments (like our geneticist or to our ob's when we were pregnant.)  I probably annoyed some doctors as I would flip to a page with a question but I did have one doctor that borrowed the notebook to make copies.  

If I can take my research with me to appointments, I find it empowering.

I keep a few manilla file folders in the notebooks that I can toss receipts into for medical expenses.  We have a separate account set up that we can pull from for medical expenses.  I have to be able to document where every penny went so keeping all the receipts in a file folder makes that easy.

(confession - there are about 4 in my car right now from this week that I haven't brought in yet.)

See?  I told you this is not my thing.

Last year, during my pregnancy with Ellie, my sweet friends surprised me every week with little gifts on our porch  - a kind way to let me know they were thinking about us and praying for us.  Sometimes I got my favorite sparkling water for a little break or a cookie or a movie to watch with Ellie in the Belly...

once I got this notebook.

I love it - it's such a pretty spiral.

So, I take it with me to appointments (big ones - not little check ups with specialists) to take notes.

I like having something pretty to write things in and it makes me happy.

See?  Full of notes from an appointment (hematology I think.)

(doctor's direct lines & email addresses are covered up... I will say I am often so thankful for doctors who have shared their personal numbers or email address with us - it makes it easy when I need to share information with them.  I've only had to use a doctor's cell number a few times - and each time because he asked us to call him on it.  I have a few doctors who have surprised me with texts about things... I must admit that it sometimes makes communication easier when I can just directly talk to them (or email or text) instead of dealing with receptionists or office hours.)

I needed a way to keep the kids' records separately.  Guess which one belongs to who.

I toss records in these - shot records for instance along with doctor's reports.  I've also requested hospital reports for both kids from different places and these copies go in here as well.  Then, when I need information for a doctor, it's so handy to whip it out right there in the office and let them make a quick copy or review something.

Remember how I told you I really hate maintaining an organizational system?  This is the inside of one of those file boxes above...

I realize it looks like a mess but I can quickly grab what I need when I am with a doctor and I can quickly toss reports into them as needed... so it works with little work

Ellie's inside:

I've had this thing forever but never really used it until recently.  It's a portable file box and if you have to spend weeks or months away from home in a hospital situation, this is perfect for toting files - both medical and bills or other things you may need access to.  I used it while in Dallas for 12 weeks after Ellie's birth.  I also used it when we first moved to East TX and my filing cabinet was in storage.

These are available at office supply stores.

So there you have it... my paperwork system.  Any ideas to improve it (without much maintenance work) would be gladly appreciated.  

I have found that as much as I hate it, it is critical to keep track of medical records and EOB's and receipts.  I have found that oftentimes a parent of a child with differences quickly becomes an expert in that particular diagnosis (to some degree.)  In many ways, I feel like I can provide our doctors with important information or research or the latest article simply because I can focus on just a few narrow fields.  So, having a system to organize what I find is very important.  Plus, it makes me feel more confident and empowered.

I have also found that keeping up with my expenses and medical bills and EOB's helps me to catch mistakes and oftentimes get money back.  For instance, in the last month alone I have battled our therapy company twice about some expenses and won hundreds of dollars back.  (Actually, I didn't actually "win" the money - I just figured out that I had been grossly overcharged and was owed significant credit.)  The first time, I noticed something was off and I called the therapy company about it.  It took lots of phone calls and basically me repeatedly asking them to clarify and explain certain charges that weren't making sense to me according to my EOB's... (it wasn't hard for me to need lots of clarification - numbers are just not my strong suit...) and then finally the phone call that they realized they had in fact miscalculated and I was owed a lot of credit in therapy.  Just today after Ellie's therapy, I was told I owed $71 dollars.  I commented that it didn't sound right and the woman began explaining to me how she had arrived at that number.  I grabbed my calculator on my phone and double checked her math - it was $17 that I owed.

Needless to say, I have the insurance handler/billing woman at our therapy place's name and number on speed dial on my phone!

I have also battled a major expense that I did not authorize and lost.  That was extremely frustrating but I know that I tried (& have not gone back to that particular doctor since.)  I have learned that when I don't understand a bill to contact either the hospital or clinic or our insurance company and ask for clarification.  I don't mind admitting I am stupid if it helps me understand something better -especially before I write a big check!

But, I have to be able to provide documentation to prove my point sometimes - my files become critical when I need to fight something or prove that we spent a certain amount or whatever.

Ok - so that's a little bit on how I organize (or at least keep the paperwork beast at bay & maintain my sanity.)  I think when someone does get a diagnosis there is always an overwhelming sense of fear about the impending insurance battles and paperwork... I've found that not thinking long term but thinking just a week at at time and devoting about a few hours a week to dealing with it helps me manage it.

It isn't super organized.  It isn't pretty for sure.  (Well, my note taking spiral is pretty & my  blue and pink accordion file boxes are pretty but the rest of it... not so much.)

But, it's accessible and it's manageable and it doesn't control my life.

And those are my tips for quickly organizing and maintaining (sort of ) your sanity when it comes to the paperwork if you have a medical condition.
Any other tips out there?

Anyone want to volunteer to come completely rework my system & make it more efficient?