Friday, June 23, 2017

#SaveMedicaid Part I

Ok.  It’s time to get real.  I usually try to gloss over some of the healthcare, and advocacy stuff, but with things as scary as they are, that may be pretty much impossible.  I made a vow when I relaunched this blog, that it would encompass ALL parts of myself, and that’s a pretty big part, regardless of how well I may hide it.

Unless you live under a rock, you know that health care is in SERIOUS danger.  The proposed “health care” bill was unveiled yesterday with the new “administration,” and let me just say, I use the term care loosely.  Take a gander at the summary and make sure you have your barf bucket nearby, as it is basically a mass murder bill.

While it’s a dumpster fire all around, I want to discuss Medicaid.  Rachel Maddow spells it out perfectly, as really Medicaid is the country’s LARGEST insurance plan and covers 74.5 MILLION people- mostly women, children and people with disabilities. SEVENTY FIVE MILLION OF THE PEOPLE WHO GOT OFF THE TITANIC FIRST.  SEVENTY FIVE MILLION.  LET THAT SINK IN.

Medicaid is NOT welfare; it is one of the best insurance plans in the country that covers things that private insurance does not cover. Things that are essential for people with any “beyond average” health needs require to be alive… or be in their community instead of a hospital.  These can include wheelchairs, life sustaining IV nutrition, assistive devices or PEOPLE to help with eating, going to the bathroom, communicating, GETTING AROUND.  You know…. Those things most people do every day without batting an eye. 

So here’s where I get real.  This is the first time in my life I have NOT had Medicaid.  I have also had private insurance.  I have a rare genetic disorder, and I rely on IV nutrition to LIVE.  I get 7 bags of IV fluid delivered to my apartment every week.  My love, Owen Reese puts this in the fridge and helps me prepare it every night.  I keep a stock of medical supplies to administer said IV (these all cost money and are not available at Walgreen's).  The cost of my daily existence is roughly between $7,000-$10,000 every two weeks, and this is when I am at my very BEST health.

I could very easily end up in the hospital for an infection because of my disease.  I get frequent Iron infusions.  I get regular bloodwork that costs $1,500.  For now, my private insurance covers most of that (MOST).  Here’s the plot twist.  I work for our state Medicaid program right now.  I can’t get into that, BUT for the sake of irony, it’s important.  IF I lost my job due to Medicaid cuts, since this new bill wants to make blood thirsty $800 BILLION cuts to Medicaid, I would NEED MEDICAID.  If one of us ever had a medical crisis, we may need in home supports to STAY IN OUR HOME.   Here’s the thing I often don’t talk about.  On paper, I am "nursing home level of care," or “hospital back up.”  I would qualify for the program I work on. What that means, is, if all of a sudden, I didn’t have the support, or the ability to care for my own medical condition as well as I do I would need to be institutionalized. Yes, I said it.

When my sister and I were little, our parents wanted to take a vacation and because our needs were too high for “respite,” (which probably was not even a covered benefit under their plan, they suggested my parents “PUT US IN A NURSING HOME FOR THE WEEKEND.”

FOR. THE. WEEKEND.  Two, young, vibrant, independent girls who happen to have a few extra steps due to their medical diagnosis.  This story still grosses me out to this day, that was even suggested as a solution.  Needless to say, my parents did not go that route, and we were fortunate to have the natural supports that we found someone to stay with us so my parents could have some grown up time. 

But I digress.

The point of this is to say, the cuts to Medicaid would be life threatening to thousands of people.  This is not “lazy people living off the government.”  Once you are over the age of 18 this is NOT AN ENTITLEMENT PROGRAM.  You have to apply for it, you have to fight for it, and you have to justify your needs over, and over again.   It is not “free money,” it is not “disability.”  It is necessary healthcare coverage so people with disabilities, and other complex medical needs can maybe be CLOSER to achieving some sort of quality of life when our society is still riddled with obscene barriers every step of the way.

When I was little, growing up, with more medical needs than my family ever thought we could handle? I WAS ON MEDICAID.  When I was in college, trying to further my education so I could have a job, and a fulfilling life as an adult? I WAS ON MEDICAID.

When I was in grad school, working in public health and operating a small business?  GUESS WHAT? I WAS ON MEDICAID.  And guess what?  I pay taxes.  I pay a lot of taxes.  If my health care coverage is taken away so that I can no longer work?  Guess what…. Then I am “living off the government.”  And the government CHOSE THAT.

This is definitely just the beginning of how I feel about this entire debacle, but I needed to begin by setting the stage.  $800 billon cuts in Medicaid is just one terrifying piece of why the proposed bill is unacceptable.

And my story is just one of 75,000,000 that will tell you why. 

Saturday, April 01, 2017

Colorado Continued

Remember when I used to write a blog?  Ugh me too. 

I am the WORST.  Except not really. I don’t even have any good excuses except for life has been happening at an unbelievable pace, and there was this period of time after the presidential election when I forgot how to make words.  But I’m not here to talk about that (yet).

I’m mostly here to pour some words onto a page about the last almost year of my life because that’s what I do, and I am a selfish millennial who believes the world wants to hear about it.

Before I get to the good stuff, let’s back up to where we last were.  About a year ago, my temp position, my first job in Colorado was coming to an end.  I applied for a position within my section, sure that I would get it, because well… they wanted me to move here.  Well SURPRISE.  I didn’t get it.  I didn’t talk much about this when it happened, because it was a lot to process, and I still didn’t know where I fit into this department landscape, and I didn’t want to burn any bridges.  It was tough.  This was also during a time I did NOT have health insurance (another blog I will revisit).  My health was not at its best, and I was trying to “put my best foot forward” to land a permanent position (doing anything really at this point, I just needed a paycheck and to be able to get my prescriptions again).  When I didn’t get the job, it was like the rug got pulled out from under me again and the world started spinning. 

Had we made a mistake coming here? Would we be able to pay rent?  Whose family would we live with when I failed once again? Maybe not all of these thoughts were necessary, but they were real.  These are the rollercoaster emotions and thoughts of real transition folks. I cried in the parking lot as I watched my current “team” walk away from me and go to lunch together.

I let myself feel all of my feelings, and then I took a deep breath, put on my big girl pants (again… man these things get a lot of use, the rhinestones are starting to fall off) and I re-evaluated.  There was a barricade in front of the “easy road” I had hoped I could take, seamlessly falling into a job where I already was, with the work I had already been doing for 9 months.  But here I was. Once again, the universe had presented me with an opportunity.  An opportunity to decide what my Colorado path was going to be!  I revamped my résumé, and hit the ground running. I reached out to my networks and applied for so many jobs.  Now mind you, before spring of 2015, when I was getting close to graduating from BU I had NEVER applied for a job (I know, don’t hate me).  But I’ve always worked.  I was very fortunate in the way that every “job” I’ve ever had rolled into another one, and people just sought me out to be a part of things, so all of this was new to me.   I had to remember how to sell myself, and I had lots of people help with cover letters, since I didn’t speak the language of the system yet.

Fast forward to June, when my job is about to end, the Friday before my last day, and I have two offers on the table, one with my current employer, who had (at the last possible second) whipped together a “position” for me, and one, doing real, state level health policy at an office that would be two blocks from my apartment.  During that interview, I was nervous, but I had this buzz throughout my body as I spoke about my experience in policy, getting invited to the White House and my connections with the disability community that made me realize “You know… I think this means I’m excited about this!”(I was later told I had given a “mic drop interview”).
It turns out, my boss had been in Vegas when we were going back and forth about the job offer, but he had gotten the cell phone number of the director of HR to be able to give me a formal offer, since he knew I had another offer at the same time.  What a day that was! I was shown, if you really want someone, you can make it happen, and it was time to go where I was valued!

I even got a couple weeks of "Funemployment" before I started new position, which was much needed! 

Today actually marks my 10 months in my current position, and I think it is one of the best jobs I’ve ever had.  Granted it is HARD work, but while some may consider it thankless and unfulfilling, I can’t believe I am finally in the process of making tangible systems change.  We are not doing ambiguous logic models and learning objectives that never go anywhere.  We are writing policy and serving real people.  What could be more fulfilling?  I recently realized, I think I am the perfect balance of optimistic and jaded to be in this work.  I have seen both sides of this service and I know it’s not easy and it’s not fun, but it’s ESSENTIAL for so many individuals to live their best lives, so someone has to do.  I now have a paycheck, health insurance, a retirement plan, PAID TIME OFF AND SICK TIME, and an amazing group of colleagues, so I can’t complain.  It all works out. 

Trust the process, and trust yourself and those who truly care about you. I have zero regret coming to Denver, and what this last year taught me is just how many people we DO have in our corner and who really mean it when they say “Do you need anything?” or “How are you really doing?”  I still am in awe of our incredible community.

A couple of other huge milestones that happened recently, that I will put on my calendar to write more about, but for a teaser

WE ARE GETTING MARRIED!  After dating for 5 years, and living together for 4 -After braving blizzards, and bombings, and grad school Owen gave me a ring, with the Nana’s flawless diamond and said “Will you Marry me?”  And I was like OK!  Stay tuned for lots of wedding talk, and me being a cheesy girly girl that I once despised!

The other big news WE MOVED!  After 4 years of cozy studio living, we have a 850 sq ft ONE BEDROOM.  I need to wrap this up so we can go buy a couch.  It is so perfect for us, and we are on the first floor, which has already been life changing. 

So guess what guys?  It’s all happening.  All of those things I thought we’d never get to, here we are.  It is the craziest thing.  I am REALLY happy.  To those on the transition train, let me just tell you. It’s possible.  It’s not always easy, and it sure isn’t fun, but keep going.  I know it sounds silly, but really, you can create the life you want.  I never thought I would be here, but if you put it out to the universe, make a lot of Google docs spreadsheets, and aren’t afraid to take a leap of faith, you may surprise yourself with how things work out.

More on that later, but for now, I am going to wake up my FIANCÉ, and go buy some furniture for my big girl house!


Friday, May 20, 2016

Friday Favorites 5.20.16

When I relaunched this blog two years ago, I decided it was going to be a balance of all aspects of my life.   Well, I don’t know about you, but that last entry made my head hurt, so I think it’s time for something a little more fun.  How about some Friday Favorites?

Ok.  I thought so.  Here’s a list of random things I’m loving recently!

1.     This box of K-cups.

Seriously though.  I bought this random box of Kcups because I like getting to pick a new flavor every day instead of being limited to 24 of the same flavor I may or may not be in the mood for, and since my favorite local small business coffee dealer Big Cats Coffee (out of New England) is no longer able to customize boxes, I went to Amazon.   This box has so many brands and flavors I had never even heard of, including Friendly’s ice cream flavors like Vienna Mocha Chunk! It's just like going out with my family after a dance recital!  Every morning is a treat, and I actually have found myself spending less at Starbucks, because I can have an even better cup of coffee in the office!  Bam!

There is actually a funny story here, because I didn’t buy them.  I have not bought shoes in quite some time, and have recently found myself regretting some of the intense purging I did before the move.  Ugh.  I was at work the other day, and a colleague of mine stopped me in the hall and said, “Mallory, can I ask you a weird question?  What size do you wear… like where do you shop?”  Trust me, on the scale of weird questions I have received, that’s like a .5.   She went on to explain she had a daughter who had outgrown some of her shoes and clothes and they were really nice and she was wondering if I would like to try them on and see what I wanted before she tried to sell or get rid of the rest.  WELL YES, AND HAPPY BIRTHDAY TO ME.  She brought a bag of shoes a couple days later and I sat awkwardly in my cube with no shame, trying on various pink winter boots, flip flops and these babies.  The thing I love about them is they are so comfortable, AND they both zip up all the way.  I have a few other pairs of black zippy boots and while my Fryes are also super comfortable, I swear I have one calf that’s bigger than the other, and one won’t zip all the way.  So thanks Kenneth Cole, and my dear friend Gina for these beauties!  My awkward calves are so grateful!

I am so sorry if you are a person who used to have respect for me, but this show has been my existence for like the last month and I am totally in a show hole.  I even began dreaming about these people like they were my friends and that Lisa Vanderpump was my boss. Let me be honest with you.  This is pure trash with people that I have zero respect for.  Except, I basically want their lives.  Nobody in the world could ever drink that much or speak to their boss the way they do and still have a job, let alone get to take a week off here and there to go to Vegas or Hawaii EVERY time a staff member has a birthday.  But they do.  And they’re models and have gorgeous apartments and it’s L/A and just… I CANNOT STOP WATCHING.  Lucky for me, there is talk of Season 5, and I have been filling the void with the podcast of our favorite beauty/villain, Straight up with Stassi.  So there’s that.  Also, my NY housewives are back, so it’s not a total show hole.  Sigh.

5.   My license picture

Let’s talk about this for a second.  Are you serious?  I got complimented on my old license and ID picture. Gone are those days! Nobody told me that when we moved here that Colorado was a “no smiling state.”  Bummer dude.  I especially love my new lazy eye that appears when I try to take a selfie, and my perma-cow lick that I cannot get rid of no matter what I do.  So, I guess it is just all things me.  There are plenty of other smiling pictures, and, if I ever do commit a crime (not in the cards….)  I can save them a step.

Happy Friday Y’all.

Monday, May 16, 2016

Life is a Highway Part II

Here is the full saga of my adventure trying to transfer my out of state license after the big move. I will warn you, it's a SAGA. My hope is that maybe it can save other people some of the nonsense I went through. Feel free to read on if you have time. Prepare to get frustrated...

Five years ago, I got my driver’s license.  As some of you may know, it took me about ten years.  

What I didn’t think about was that after that, I might be moving to another state (two different states actually) and what that would mean for said driver’s license.

LUCKY FOR YOU.  Once again, I am here, to provide transition “lessons learned” so that if any of you driven, ambitious young people want to get the hell out of your home state you will know the steps to go through to eventually transfer your out of state license, be a real citizen of that state, and MAYBE have to make less ridiculous trips to the DMV than I did.

Let me back up a little bit.  

We moved to Colorado in August of 2015.  My license expires May 28, 2016.  I got my Colorado license today… with 12 days to spare, before my Maine license would expire

I made my first trip to the DMV in October of 2015.  There were a couple of reasons I waited to start the process a little late in the game.  The first one, is similar to why I waited to  transfer my healthcare when I was living Boston.  Because I just wasn’t sure.  As I have mentioned before, I am most definitely my own worst enemy when it comes to believing in myself, and my life choices.  WHAT IF I FAIL!?!?!?  What if I lose all my money and my job, and everyone hates me and we lose our apartment, and I have to move back to Maine!?!?!!? I might as well keep my Maine license, juuuust in case.

The second reason- let’s just be clear about this.  I AM NOT ACTUALLY DRIVING IN COLORADO.  My car, Lily, is happily in Maine, hanging out with my sister, because logistics, and I take the bus, and it’s fine.  Otherwise, I would have had to renew my out of state license within 30 days of changing my residence to Colorado (this may vary per state, so be sure to check)

Anyway, so one day in October, I took the morning off from work, and took an Uber to the specific DMV that does driver’s license (cha ching- $20).  I had done my research on the website, and had my proof of residency, my passport, my current license, a blood sample, my first born, etc etc.  
It really didn’t take that long to get called and go through the process, so I figured I was good to go.  However, when they called me up to get my photo taken, they had me review my information to make sure it was correct.  And my apartment # was wrong.  UGH. So, I mentioned it (come to find out, I managed to grab the ONE piece of mail that actually had my address wrong…but somehow it got to me so go figure) When I mentioned it was incorrect, they had me sit back down.  So I did, and waited, and waited.  And I knew I was not leaving with a license.

Sure enough, they called me back up, and having looked at my file, explained to me that I needed to have a form filled out by my doctor, because it said on my license that I needed accommodations in my vehicle THAT IS NOT EVEN IN THE STATE OF COLORADO.  I will say the staff was super nice, and even checked with the manager if this was the case, but it was.  Then they sent me on my way, with the form.

It’s kind of funny because I try not to be a big nerd who is like “Everything has to do with health care,” but you guys, everything has to do with health care.   

At this time, I was also transitioning to my second PCP because my first one just did not have follow through that I needed (that’s another blog).  I ended up switching to an Internal Medicine group, that is a lot better, so when I got my first appointment, I brought in the form, to this poor doctor who has never even met me.  She was nice, and didn’t ask many questions, and filled out the form.  

Then the holidays, work, and life happened, and I didn’t have the opportunity to take ANOTHER morning off to go to the DMV and do this again.  But, since the clock was ticking, I found a day.  I made sure all my mail had the correct address, paper-clipped all my crap together, took another Uber (cha-ching) and went back to east middle of Nowhere to the Driver’s License office.

This guy was also super nice, but as he examined the form, he told me that it didn’t include the specific information it needed explaining my particular accommodations that I need IN MY VEHICLE THAT IS NOT IN COLORADO.

I asked him (still being my super nice, Advocate self)  “Ok, well does it say to include that information on the form?”

DMV Dude: “Well, no.  But the doctor is just supposed to know.”

Clearly, they teach mind reading in med school.  I wish they had taught that in Public Health school, then maybe I would have known what I needed before I went to the DMV twice

I know he was just trying to help, but clearly not understanding how healthcare works, this kind young man said “Well if you can go back today and have them fill it out, and come back, I can help you right away.”

My doctor’s office is a half an hour in the OPPOSITE direction from my house, so about an hour from the DMV, which is in the middle of nowhere in the other direction.  Also,  you don’t just stroll into Internal Medicine and say “Hey, I need someone who can just jot some words on this form.  AGAIN.”

This was also the day of the Super Bowl parade, so getting anywhere in the city would take twice as long.  I ALSO need to mention, that in my current job, I do not have paid time off.  Not only am I paying to Uber each time, but I’m missing valuable work time that I am not getting compensated for.  My choice, but still, another factor that makes each DMV trip even more painful.

After they sent me away the second time, I had a very long moral dilemma.  I had a form with my doctor’s signature, and we had discussed my accommodations and everything I needed, technically I could just write in the notes section, whatever they needed and save myself a trip BACK to my doctor’s office.  I also didn’t have health insurance during this time, so I was not about to be billed for a dr filling out a form they ALREADY FILLED OUT.

Finally, I decided I was just going to fill in the information, and make another trip to the DMV.  Well, apparently the universe didn’t think that was a good idea because the form was blank.  After my second trip, the guy at the DMV had TAKEN THE FORM THAT WAS SIGNED and given me a blank one, without even telling me.  I was literally back at square one.  Are you kidding me?

At this point, I had lost much of my motivation to even make this happen.  The other reason that I was in such a panic to get my CO license in the first place was because I was going to be applying for jobs with the state, and having a CO license is a requirement.  At this point though, I had gone through the process and checked with HR, and since I already worked at the state, and could prove residency, as long as I was working on it, they told me it wasn’t as urgent.  That helped me relax a little bit, but I still just wanted to get it done.  The clock was still ticking, and as I mentioned, after spending 10 years trying to get my license, I will be damned if I was going to sacrifice it because the system is completely inefficient.

Fast forward to May, after four months of not having health insurance (another blog), and I make an appointment to see my new PCP, and figure i’ll have her fill out the form ONCE AGAIN.  Please note- this was AFTER I had been messaging with my team (who are all residents so I never see the same person twice) and they said I could mail the form, and they would fill it out and send it back.  Then they told me I needed to make an appointment EVEN THOUGH THEY ALREADY FILLED IT OUT ONCE.  But whatever, at this point I had other issues I wanted to discuss anyway so I actually just took a whole freaking day off in the name of wellness and took the bus to the doctor.  Because Eff Uber when the sun is out and I have nothing but time.  

I go to the doctor, and wait… wait… because healthcare is inefficient.  Then I get in with the doctor, and she says, “So you’re here for some paperwork?”  

“Yes, and you have the paperwork.  It was in an envelope with a note that included very specific instructions on what to write and it had a note that said, DO NOT LOSE THIS FORM.”

“I’ll be right back.”

I’m sure you know where this is going.  They couldn’t find the form.  I decided before I even went, I was not leaving without this form so I told them to find it.   They were super gracious, and they did find it.  Let me re-emphasize. I WROTE DOWN what I wanted them to write on the form.  This was another person who had never met me, so I basically did all the work and they got to bill my insurance.  CHA- CHING.  I left with the form.

Today, 2 weeks after that appointment, I decided to just take the plunge.  I gathered all my documentation UH-GAIN.  Left the house at 7 a.m. in the rain and Ubered to the DMV.  Luckily, I had the same girl I had the first time, who raised both eyebrows when I said “Maybe third time’s the charm?”

In less than 20 minutes, I was waiting to get my picture taken.  I was a little worried when she disappeared for a little too long, that there was some other reason I wouldn’t be leaving with a license, but I made a vow to myself I was not leaving until it was complete.  I was done playing games.  

So now 6 months later, I left with my Colorado license and and a goofy picture because apparently in Colorado you can’t show your teeth when you smile, BUT I DON’T CARE!!  Now that this is behind me, next time I can just renew this baby online!  The Maine chapter of my identity is officially off the books… there you have it!

Best of luck to all of you as you move into your new lives, and new identities.

For those of you who want the TL:DR version, here are my top five lessons learned from the Driver’s License Saga Part II:
  1. Don’t trust the internet.  If you have an adapted vehicle or any sort of your driving experience was a little different, call ahead of time to see if there is any additional documentation you need (I went back and looked, and that part of the website was down. Of course)
  2. Make copies of everything and stay organized!!!!! I wish I would’ve asked for a copy of the form before they took it away (But I thought I was getting the same one back) JUST SCAN OR MAKE COPIES.  After my first trip, I just kept the documents I knew had the correct information so if I did have time to go back, I could just grab my “DMV packet!”  It saved everyone time once  got there.
  3. Keep your cool.  Whether TSA or the DMV, if there are added steps for you, even if you are annoyed, take a deep breath and be clear on what you need to do.  It’s ok to mention there are gaps in the process or how it can be improved, but leave with a smile or at least a “Thank you.” and  you’re more likely to get what you need eventually.
  4. DIY. Always.  If  you want something done right the first (or second time) DO IT YOURSELF. Clearly my PCP who I was meeting for the first time is not going to know about my car in Maine.  Write the exact language you want them to put on the form, this goes for any sort of eligibility requests, or Medical Necessity as well.  Any guidance you can provide, saves them a lot of time and will get you your form back a lot quicker.  If you don’t know the language to use, find an advocate or someone who can help you make sure you’re “playing the game” correctly.  Hit me up, I minored in this!
  5. DON’T GIVE UP.  Seriously.  Cheesy as it sounds.  Figure out what you need, and the people who can help you get it, and keep at it.  The system is broken, but we can’t let it win.  I will definitely be writing a letter, since if that form had been on the website, it would have made my life a lot easier, but ultimately I got what I came here for, and I can now take a deep breath and enjoy my new Colorado life.  

All in a day’s work!