Sunday, August 06, 2017

The Scooter That Love Bought

Last month I presented at a youth leadership conference.  It has been a long time since I have presented to young people, who have hope, ambition and dreams for the future.
I sort of had to sand the edges of my recent presentations since I have mostly been presenting to providers, or older students who are pretty aware of how broken our system is, in all the ways.

In this presentation, I spoke about the importance of asking for help, and identifying the supports you need to be successful.  It was also around this time, I remembered one thing I am really bad at:  asking for help.   Over the years, and through my own transitions, going to college, living in Boston, moving to Denver,  it seems I have waited until the last minute to speak up and say I can’t do it on my own.  Or it is when my body simply shuts down to say “Yea, this is too much, you need to bring in some back up."

When I returned from this conference full of energized youth, it was becoming clear that my Scooter (who we all know fondly as Barbie) was not doing well.  She could not go a block without her battery dipping frighteningly low, and she was making sounds that I just knew were not good.  I had bought a new charger, hoping that would buy me some time, but I knew she was at the end of her scooter life.

I had a technician come out and evaluate the situation.  Her prognosis was not good.  They don’t sell just a motor, and for what it would have cost me to have her repaired, would be more than a new scooter.  Barbie had taken her last scooter breath.  All in all, she served me well.  For the amount that I use her, it really was amazing that she lasted as long as she did.  The model of scooter I typically get, for portability and for my size, is really not meant for daily commuting and city adventures in all seasons.  I always tell people, “She was meant for malls and airports.”

So here I was, without a scooter.  While I like to tell myself that having a scooter makes my life easier, the reality is, I need it.  The weeks without one were a strong reminder of this.  After a few days of just walking within our one block radius, my whole body was in pain. 

It was also a reminder that there are times where you simply NEED to ask for help. 

My colleagues at work were absolutely amazing, and I did not have to Uber the two blocks to work the entire time I was scooterless.

When I found out I needed a new scooter, my heart sank.  I knew that was probably going to be the case, but it wasn’t something I was prepared for.  We are trying to save for our wedding, and I am just beginning to make a dent in some of my ever lingering medical and student debt.  This was not good news.   Not knowing how long it would take me to save for a new scooter, and needing to get back to my regular work schedule, I decided to take another leap of faith and ask for help.

When I was much younger, I witnessed the magic that can happen when a community comes together to help someone in a time of need.  While times have changed, and the form in which community fundraisers occur has changed, I figured I would put it out to the universe.

I created a Go Fund Me page, and explained the importance of getting a new scooter.  How she helps me get safely to work every day, and gives me the independence I need to be active in the amazing city we live in.  Without a scooter, I am limited in both my social, and professional life.

Let it be known, I felt a little weird doing this.  I felt like I should be able to buy a new scooter.  That if I made the choice to pay out of pocket, I should always be able to do so.  I should simply forego our plans of having a wedding, and address our immediate needs, that we unfortunately have to deal with, when others our age may not have to.  But I did it.

And there are NOT words, for what I felt when in just over 24 hours I had raised enough for a NEW SCOOTER!  Friends, family, people I didn’t even know, donated all amounts so that I could get my independence back.  People donated in honor of people they had lost, people left notes of encouragement that they wanted to see me back in action.

I fought back tears at work, as I got notified of donations of $100, $300…. People who had needs and families of their own.  I still can’t believe it.

Today I took the new scooter on her maiden voyage to spend time with my best friend!  Having the freedom to be able to come, and go, and just get a cup of coffee brought me so much joy after two weeks of feeling stuck within the small area my little legs could take me!

Thanks to the gratitude of everyone who pitched in, I was even able to get a new model that might last me a little longer and be a little safer than the model that Barbie was! 

I am so excited for new adventures, and I promise I will name her soon, but in the meantime, please accept this as a HUGE universal thank you.  As the state of our country feels bleak, and hopeless, I have been reminded there IS good in the world, and LOVE CAN WIN.


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!