Girl with frustration and fear

I don’t know about you, but (sometimes) when bad things happen to me my first instinct is to think, “Who’s fault is this?  Who is to blame?  Who did this to me?  Why?  Why did this happen?”  These aren’t pleasant thoughts (obviously), but I am human and imperfect and I have a lot on my plate to deal with.  And, these are the thoughts I struggled with all day yesterday.  So, when I see that my thoughts are going a bit wonky I know that is the best time for me to sit and write.

Yesterday I found out some less-than-good news.  I don’t have Medicaid.

The transition from the local medical coverage I had to Medicaid was supposed to be seamless.  This previous coverage carried me through 2 brain surgeries and countless ultrasounds and even a colonoscopy, for this I am very thankful.  I knew that with Obamacare starting (or whatever you choose to call it) there would be problems for me.  Many problems.  That is why I chose to have the hysterectomy last month, under the previous coverage.  Because I was freaking out about what January 2014 was going to be like.

Cut to January 2014.  Here I am.  I am living it.

Around October of last year I received some paperwork that said I was denied Medicaid coverage.  When I called about it the case worker told me it was just a formality.  Of course I was denied because I had the other coverage.  “Don’t worry Heather.  All is OK.  It will be fine.” I was assured.  Silly me.  I believed them.

As I looked at my planner for January (there are 5 appointments with my “team” this month) it dawned on me that I had not received the new insurance card yet.  I knew that I needed this card before the appointments and procedure (and before I see the surgeon again to release me back to work), so I called Medicaid Customer Service yesterday.  After waiting on hold for 1 hour and 48 minutes, I talked to a guy who told me the stellar news:

I did not have any medical coverage.

You know that paperwork I received in October?  Yeah.

Do you realize the weight of that statement?  Do you realize how scary this is for me?  I have a freaking brain tumor and genetic condition.  2 rare diseases.  There’s nothing for me as of today.  Am I now a statistic? One of those people who will lose everything (not that I have anything to lose besides my DVD’s and a few of my Dooney & Bourke bags), but COME ON!  This is serious!  This isn’t funny and this is not a joke. This is real life. This is my life.  What am I supposed to do with this?!


Pic from the Global Genes Patient Summit 2013

As I talked with the Customer Service guy (and choked back tears) he created a live application for me (I didn’t quite understand it all. He just mentioned yesterday’s date a lot and that things would be retroactive to the first of the month if I get approved.)  Did you catch that though?  IF I get approved.  IF.  There’s a lot behind the word “IF”.


conjunction \ˈif, əf\

—used to talk about the result or effect of something that may happen or be true

So.  Affordable Care Act?  Thought you couldn’t risk being denied?  I do not understand it all.  And yesterday, my mind was spinning.  I felt sick.  My neurosurgeon appointment; oncologist appointment; surgeon appointment; endocrinology appointment; and I had a thyroid ultrasound scheduled for Friday but I did end up rescheduling that to February.  On top of all that, I was due for my breast MRI in December but had to delay that due to the hysterectomy.

Whew.  My heart is starting to beat faster even as I type this today.  😦  I don’t do uncomfortable well and right now I am very uncomfortable with all these unknowns.

As this was all happening yesterday and I did all I could to keep my thoughts calm and positive, I kept thinking to myself, “OK, self.  You need to do all you can right now.  Exhaust all your possible resources in your favor.”  I called my surgeon and my primary doctor and left messages for them.  I will ask them if they will write a letter on my behalf that I will send with the further application that will come by mail in a few days.  I don’t know if it will make any difference but who knows.  Maybe it will.  I can hope.  Sometimes, my hope falters though.  Evidently here is an object lesson for me to put hope into practice.

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