All I want for Christmas...

Hope you enjoyed the video!  I absolutely love it!!  As I initially wrote this, I still didn't have insurance in place but I hoped that this video would represent the feelings I would soon be having if I could just get things finalized.

So here's the DL:

When I completed my application on Healthcare.gov, I was deemed eligible for Medicaid because of how I put in my estimated income for 2014 based on 2013 figures.  I have been going back and forth between Healthcare.gov and Medicaid ever since.  I knew that I didn't qualify for Medicaid because Utah did not accept the expansion of Medicaid benefits (neither did NC).  However there were two BIG issues I missed:

1. Because of the income amount I put in, I fell in this ridiculous gap that exists between federal and state coverage.  If you make $11, 500, then you qualify for lower premiums in the Healthcare.gov Marketplace.  If you make less than $11,500, you may qualify for Medicaid but only if your state accepted the expansion.  If you live in a state that did not accept the expanded coverage of Medicaid then you unfortunately have to select coverage from private insurance companies and pay the full premium rates (which only normally happens, for an individual, if you make more than $49,500 a year).  Does this seem as counter intuitive to anyone else as it does to me?

2.  Once you've been deemed eligible for Medicaid, the Healthcare.gov people will tell you that there's nothing they can do to change or remove your application until after you have been accepted or denied by the state agency.  RED FLAG:  The state of Utah has not received any information for ANYONE who has been deemed eligible for Medicaid by Healthcare.gov.  The two systems apparently do not communicate so the Utah Medicaid office only has record of my application with them from back in October, nothing from when my Healthcare.gov app was submitted.  And again, there's supposedly nothing that the Healthcare.gov side can do, no master reset button that will allow the consumer to withdraw their application that has been deemed eligible for Medicaid.  I know that I do not qualify for Medicaid, why you make ask?  Basically because I'm young, have no disability (even though Wilbur could potentially be considered a disability according to some documents you read), and am not pregnant nor do I have dependents.

So you may ask, where does that leave you Anita?
The answer:  Up the proverbial creek without a paddle.

On Dec. 23 (what was supposed to be the last day to enroll if you wanted coverage to start Jan. 1), I walked into the offices of the Utah Health Policy Project.  Even though this was an extremely busy day for them, they were able to fit me in.  At 10:30 a.m. or so I sat down with one of their certified application counselors, code name Maverick because he was my wingman throughout the day (though I guess that would make me Iceman...I may have to rethink this code name).  By this point I had already figured out Issue 1 and together Maverick and I figured out Issue 2.  I think we were both in agreement that it made absolutely no sense and was beyond ridiculous how this was set up.

Me with Maverick at UHPP

We tag teamed getting through to the Healthcare.gov people.  After an initial 40-minute or so wait (this was the second or possibly third time we had call them at this point with similar wait times each time), we got in touch with a lady who kept saying their system was down and there was nothing they could do.  I told her okay, but I was not hanging up and calling back and she just needed to put me through to a supervisor, I was willing to wait because I had no other option at this point.  I finally got to speak to the supervisor only to be told Issue 2 again and I was like that's not acceptable.  Then I tagged Maverick in.  After a 15-minute or so conversation, the supervisor was convinced to create a new application for me.  Yay team Maverick!!  It took forever to resubmit and I'm pretty sure the lady was mad at me and Maverick by the end because we were so insistent and persistent but whatever, I ended up with a new application ID.  I let the lady off the phone because I wanted to be able to check through the system and make sure that the plan I chose was one contracted with the University of Utah Healthcare system for 2014. She said it would take 30 minutes for my new application to show up in the computer system.  I used that time to figure out the plans that Utah accepted that I thought I should be able to get through Healthcare.gov.

Only the new app didn't show up and the insurance company couldn't sign me up for that plan on their side so I had to go back to the drawing board and call Healthcare.gov again.  After an hour on hold, my call was DROPPED!! I was mad as a wet hen!! And completely exhausted because by this point it was 4:30 p.m.  Maverick and I had been at this for 6 hours!! And while I'd been on hold he'd been helping other people sign up for insurance.  I told one of his coworkers that I didn't know how they did it.  It has to be so frustrating for them on a daily basis trying to navigate a new system that people (consumers and employees of Healthcare.gov) don't always understand.  I've got mad respect for the people who work at UHPP and other agencies who provide similar services, that takes a whole new level of patience on their parts to not be ready to pull their hair out on a daily basis.

So I left UHPP, tired, hungry, slightly dejected, knowing I'd need to call Healthcare.gov one more time and praying that if I called them late enough by East Coast time that I would actually get through.  I admit I stopped at IHOP for cinnamon hot cocoa and pumpkin pancakes.  I just wanted a little holiday cheer which seemed in short supply.  Then I got home and there was a Christmas present from Aunt Gladys waiting on my doorstep.  Somehow she knew all I wanted to do was cuddle up and rest for a bit because there was a beautiful plush holiday blanket with poinsettias and cardinals on it!  So I got comfortable and after a little break, I called Healthcare.gov again.  I called them at 7:30 my time and two hours later I woke up (yes, I'd passed out in my chair) with a start to realize that someone had actually picked up.  What happened next is quite frankly my Christmas miracle!!

I managed to wake up before I was hung up on though who knows how long she'd been waiting for me.  Her name was Mary...how perfect is that two days before Christmas.  She was kind and competent (I mean like really seemed to know what was going on and how to navigate the system fully!).  I gave her my information to verify my identity and low and behold she could see the new application.  I told her I knew what I wanted.  I was after a Silver plan whose parent company was BCBS that had a full contract with UUMC.  We found a couple of other options first and then she found my plan.  She agreed with my assessment that the plan was a good one and GOT ME SIGNED UP!!!!!  I told her she was my Christmas Angel and broke into tears.  I think she started crying too and told me it made her Christmas to be able to help me.

I am BEYOND relieved!! I can't even express how happy it makes me to know that I have a plan in place that will begin January 1.  I still need to follow-up after Christmas and pay my premium with the insurance company directly but things are FINALLY in place.  I can get off the merry-go-round now and move forward!! HALLELUJAH!!!

Just wanted to share one more flash mob treat for everybody, this one with bagpipes and drums!!  I wish everyone a Happy Holiday season!! As the story goes...Merry Christmas to all and to all a Good Night!!!!

I'll take "Honest Answers vs. False Hope" for $2000, Alex.

DAILY DOUBLE!!
Alex Trebek:  All right, Anita, what is your wager?
Anita:  My continued sanity
Alex Trebek:  For your continued sanity, the answer is...

(There should be a chime in here somewhere as the answer is revealed.)

The value of a customer service representative providing a straight and honest answer instead of a carefully constructed placation.

Anita:  What is priceless?
Alex Trebek:  That is correct!

I'll go ahead and caveat this right now, this post is a product of my continued frustration in the seemingly never-ending search to get health insurance.

So October 1 was the day that the process of getting health insurance as we knew it was supposed to be revolutionized.  This was a day I had been looking forward to ever since I found out about Wilbur.  As part of the Affordable Care Act, I could no longer be denied insurance coverage because of a pre-existing condition.  Enter the stupid government shutdown...

Now I don't normally talk about my political views but frankly that entire situation infuriated me.  I do not care what your political affiliation is, the purpose of our government is to work for the people not get into pissing contests with the other party and force a government shutdown.  Correct me if I'm wrong, but aren't we taught as children how to share and play well with others??  Aren't we all forced to work WITH other people on a daily basis to resolve disagreements??  The asinine behavior put on display by the members of our House and Senate is embarrassing and frankly in ANY other company or organization in the world, every last one of them would probably be looking for other employment right about now.  But that's beside the point...

The government shutdown meant that the new healthcare.gov website went live with a skeleton crew available to work and trouble-shoot any issues that arose with the site.  It took me weeks to actually create an account and a few more weeks after that before I could log onto the website using said account.  Not to mention the fact that the information on potential plans was not available on the website.  So you were trying to apply for coverage without being able to compare the options beforehand.  (I think that issue was the fault of the insurance companies as well as the website managers.)

I would personally be interested in finding out how many people have successfully applied for and selected an insurance plan through the Marketplace (healthcare.gov) at this point.  I have lost track of the number of people I have talked to both online and over the phone over the last couple of months trying to get something sorted out and decided upon.

Once I'd finally gotten my application submitted, I was told only that I may qualify for Medicaid and that the state agency would contact me.  One small problem...I'd already applied for Medicaid and been turned down.  Utah agreed with my assessment, I still don't qualify.  Then I was told that any reduced rate premiums were administered by the state agency.  Again, Utah said that was not the case.  And the vicious cycle of calling healthcare.gov then calling Utah's workforce services continued.  At one point, my call was "accelerated" to the "Advance Resolution Center" giving me hope that I might actually be able to talk to someone who knew what the heck was going on.  They were supposed to give me a call within 72 hours, let's just say that period of time has come and gone and I'm still waiting.

Today, I got to speak to Stacy.  I rehashed the whole ordeal and everything I'd been trying figure out.  She listened, even when I was crying hysterically and probably made no sense.  Then wonder of wonders happened, instead of making some lame excuse about how the computer system was having problems, or that she couldn't view or edit my application, or that I'd have to be redirected to the "Advanced Resolution Center" in order to get help, or making any multitude of other excuses to get me off the phone, Stacy flat out told me that if I tried to reapply I'd probably get the same options from their website and that I should try to apply directly with the insurance companies.  FINALLY, someone acknowledged that I wasn't going to get the help or the information I needed by always referring back to the Marketplace.  Stacy also was honest with me that by applying directly with the insurance companies, I would have to pay the normal premiums.  Well, Utah had already told me that they have nothing to do with reduced premiums for low-income citizens beyond enrollment in their Primary Care Network that doesn't cover any surgery in the first place.  I had come to terms with that.  I just needed someone to have the guts to tell me how I might actually get the information I needed instead of giving me the run-around and making me think that everything would get resolved if I just kept trying to work within the established system.

I got a list of insurance providers that my neurosurgeon (along with the University of Utah healthcare system) accepts and have narrowed things down.  I can finally make a much needed decision and get on with things.  I just needed to speak to someone willing to do the right thing and give me an honest answer even if it wasn't what I (or someone in a similar situation) wanted to hear.  This whole process has illustrated something to me that I need to remember for life after Wilbur, I do not want to be led on or given false hope in any situation, it only leads to further stress and frustration for me.  Give me brutal honesty anyday!!

Wilbur...your days are numbered!!

December 2, 2013 -- 2:00 pm Mountain Time -- My appt for my functional MRI

I was a little nervous walking into the appointment today, not because of the MRI itself but because this meant that things were finally moving forward and I know what's coming up next and am already anticipating how I'm going to feel or react to the surgery.  It's kind of like me with books, movies or shows; I want to know what's going to happen already!  Patience is not my strong suit.  For instance, I made plans with friends to go see the Doctor Who 50th Anniversary special in theaters the Monday after the worldwide simulcast on Saturday.  And my friends were shocked that I watched it on BBC America on Saturday when it premiered instead of just waiting to see it in 3D on the big screen.  Please!  I always read (or watch) ahead (so that I know what's coming and can prepare for it)!!

Well, shortly after arriving for the appointment, Mercedes and I went back to meet with the nice gentleman I'd spoken to when I made the appointment, we'll call him Dr. J.  Almost as soon as we sat down, I explained about "Wandering Wilbur" and asked if Wilbur and I could get our picture with him.

Dr. J, Wandering Wilbur, and me

Shortly thereafter, the doctor from neuropsychology joined us, we'll call him Dr. B, to talk about what would occur during the fMRI.  As I understand it, the basic premise behind the fMRI is that when you use part of your brain, more oxygen is needed and shows up as a cloud (if you will) around the area of the brain controlling that particular movement or thought process.  So the fMRI allows doctors to compare what your brain looks like at rest to what your brain looks like when you're moving a part of your body or thinking of words.  The "clouds" are colored so that doctors can map the specific controls.

Dr. J and Dr. B walked through everything I would be asked to do beforehand.  Mercedes and I agreed that some of the tasks would be harder for me than others simply because I tend to dwell on some things and overanalyze others, neither of which are helpful in this situation.  I had to tell myself, "don't think too hard," "go with the first thing that pops into your head," "don't overanalyze!" Interestingly, many of the tasks somehow seemed to relate to board games.  Mercedes brought up that one of the tasks was like Scattergories.  For each task there would be a 20 second rest and then the task, then a break and then the task.  Melody took me back to the scanner and got me adjusted before I went into the MRI.

Picture time before getting ready to go in.

I'd told Melody and Dr. J that Wilbur was based off the image I'd seen of the blobfish, so that was the first image waiting for me once I got situated.  But since the picture made me laugh to see it, Melody ended up taking it down because she didn't want me laughing during the scan.  So the first part involved an initial scan, no tasks and I was allowed to pick my music to listen to over the sound of the machine.  I was feeling some Beethoven and if you're ever in need of something relaxing to listen to in an MRI, I highly recommend it!  I was once again thankful that I'm not afraid of small spaces, no anxiety medication needed.  Just a warm blanket because I got cold.  So after Fur Elise and Moonlight Sonata (and one other song I know but can't remember the name of), it was time to start the tasks and put my brain to work!

See that image on the far end of the machine, that's a picture of Wilbur that Melody had waiting for me!

There were a couple of different types of tasks.  The physical tasks involved moving my right thumb back and forth and tongue tapping (not clicking).  There was also a multi-level test where I had to silently make an association and then click a button.  For instance, I was asked to identify which objects I saw on the projection were living; those images I clicked the button for.  The multi-level test also switched between having me identify objects and having me identify similar patterns.  This was one of the ones where it was really hard for me not to overanalyze.  Had to go with my gut, as Gibbs would say!

You know I've never really spent a lot of time pondering how my brain does what it does.  Or thinking about how things are connected or distinguished up there.  Like I had never thought about the fact that just hearing something doesn't mean that you comprehend it as language or understand its meaning.  In the day to day, any sound you hear you can automatically make sense of and when someone is speaking, even if not to you, you understand what they are saying.  Or if they are speaking in another language, you can probably still identify the emotional tone behind their words.  So to have your auditory signals distinguished from your auditory comprehension was a little disconcerting.  So for this one task, my rest break involved me hearing scrambled speech and the task was repeat what I heard back to myself once I could comprehend complete sentences.  I had my eyes closed during that task so I could just concentrate on when the sounds began to make sense again.  Most of the tasks focused on my speech and language control centers of my brain.  I would read the sentence on the screen and fill in the blank with the first word that popped into my head or see a letter and come up with as many words as I could that started with that letter or have a sentence read to me and then repeat it back in my head silently.

Overall, Dr. J said I did great and that he expects all the images will turn out clear because I was able to keep so still.  Afterwards, I ended up going through some similar type tests with Dr. B, only this time I had to say my answers out loud.  I think those are going to work in conjunction with the tasks from the fMRI to give Dr. B and Dr. S a better understanding of how my brain works.  I also found out that Dr. B and Dr. S have been working together on brain tumor surgeries for more than a decade.  Dr. B is going to be the one I talk to and focus on during my time in the OR.  I am definitely going to be wide-awake during most of the surgery and fully aware of my surroundings.  I left feeling like I have a more clear picture of what this is going to be like during the surgery.

Maybe that's why I always read ahead or watch ahead with books, movies or shows.  If you know what's coming, you can prepare for it.  I don't like being scared or remaining in suspense, I don't think I ever have.  I mean I am the child who woke my parents up at 2 or 3 a.m. EVERY Christmas of my childhood to open presents!! Mom has almost no pictures of me opening presents as a child because I always drug her or Dad out of the bed to watch me open presents before either one was awake enough to think of taking pictures.  So by understanding what exactly is going to happen, before it happens, I can try to prepare myself so that I don't worry about ALL the unknowns.  If I can get rid of some of my fears and uncertainties now, then when the surgery happens, I'll still be scared but not quite as scared as I would have been otherwise.  What's that saying, "Forewarned is forearmed!"  Well, consider me forearmed!

The MRI images will be processed by the end of this week.  Dr. B will consult with Dr. S in the next week or so.  Dr. S will schedule another appointment shortly thereafter.  I'll be able to delay surgery long enough to make sure insurance goes into effect.  In all likelihood, I will probably be having surgery sometime in January.  What a crazy way to welcome 2014!