Thursday, February 4, 2016

Am I Enough?

Sometimes I feel down about myself.  In the past, a lot of it was related to being sick.  But as other things have happened in my life, there are other reasons why I feel down.

When you’re applying for jobs, which can be a demoralizing experience, it can really hurt your self-esteem, and the struggle has definitely hurt mine.  I try really hard to stay positive, but when it seems like a lot is going wrong in your life, it’s hard.

After spending two and a half years in New York, it sort of feels like a failure that I couldn’t make it work.  Even though I tried really hard.  Being back in Michigan is where I know I need to be.  For some people, New York is the center of the universe.  It’s the only place that some people can imagine being.  But it just wasn’t for me. 

It’s easy to listen to the negative comments and let those be the ones that keep coming up in our minds, even when there are positive ones, too.  I don’t know why it’s so easy to focus on the haters when it is often hard to listen to compliments and praise. 

This includes blogging.  I love getting positive comments about posts.  But sometimes the comments that stick out the most are the ones that tell me that I’m not doing something right. 

I’ve been struggling.  I’ve had a lot of change in my life over the last few months and years.  And while I am lucky enough to be surrounded by love and support, some of what resounds in my mind are the comments from those who aren’t coming from a place of love and support. 

And this hurts, even when I know that the comments have no merit and are completely untrue. 

And sometimes, when you rely on others to build you up, and they don’t, you’re only left with the negative.

But having gone through everything that I have, and being able to come out on the other side, I know that I am better and stronger than some people make me out to be. 

And I need to surround myself with the people that love and support me, and try and squelch the negative as much as I can. 

The thing that’s important to know about me is that I speak my truth and I own it, and I’m sorry if that truth is not acceptable to others.  But it’s mine, and I don’t shy away from it.  Sometimes the truth hurts.  And sometimes, the truth can set you free. 

So as I sit here grappling with my truth, I also grapple with the question of Am I Enough?

I’m beginning to realize that just because I wasn’t enough for one person, doesn’t mean I’m not enough for anyone. 

And if you’re grappling with whether or not you are enough because of the struggles you are coping with, you are.  You have to believe that.  You cannot let the negative win over the positive. 

I’m trying really hard to work on this myself. 

So the answer is:

Yes, I am enough.


Monday, January 25, 2016

On Building Playgrounds And Baking 1,000 Cupcakes

I recently saw an Orencia commercial (see end of post to watch commercial) that stopped me in my tracks because it is so different from other RA medication commercials. 

The commercial portrays a woman doing everyday things, like turning a doorknob and walking up stairs. 

And I have to wonder.  Is pharma starting to listen to us?

I can’t tell you how many times I’ve sat in meetings with pharma and the continual  trope from me and other patients is that the commercials don’t represent us and portray the disease in a way that makes the general public not understand the significance of the disease. 

One thing I don’t know is whether the people featured in the commercial actually have RA.  Many pharma companies say they cannot use real patients.  However, Gilenya, a drug that treats multiple sclerosis has done just that and features real patients who are on the medication, including my Stanford Medicine X friend Jamia.

This is definitely a step in the right direction.  This is the sea change that we need.  And it proves that if we raise our voices loud enough and we complain often enough, and we speak as a collective voice, we can get things done.  Change is possible. 

And maybe this seems like a really basic or obvious change.  But I think on the part of pharma, they don’t see it that way.  They have fundamentally changed how they talk about RA and what their medications are realistically able to do.

The commercials out there that show patients building playgrounds also create unrealistic expectations on the part of patients.  And this perpetuates the discourse that patients fail medications, when it reality, medications fail patients.  By showing situations that the majority of patients won’t be able to do on a good day not only makes patients expect that, that is how the medication will work for them, but that when they don’t experience it, that they have failed in some way because it should work for them the way the commercial shows.

I won’t call out here the specific medication whose commercials seemed to offend more than others, because you probably know which one I am talking about.  But I’ve always resented them.  I always wanted to throw my TV out the window when the commercials came on and someone was building a playground or baking 1,000 cupcakes, things that I probably wouldn’t have done pre-RA.  The commercials always left a bad taste in my mouth and felt like false advertising. 

Maybe there’s some bitterness that the medication didn’t work for me and my experience with it was pretty dismal.  But I wasn’t the only one.  And that has bothered me a lot, too.  When patients are traumatized by painful auto injectors, and patients have trouble accessing pre-filled syringes, which still burn, but not as bad as the auto injector, someone should be listening to that, and finding a way to change it.

So maybe this goes beyond commercials.  It speaks to patients having a voice when it comes to the medications that are on the market to treat us, and even medications before they even come to market.  It speaks to patient centricity, and what that means and doesn’t.  Patient centricity means involving patients from go.  It means bringing them into the conversation and keeping them around long enough to make it matter.  It doesn’t mean bringing just a few patients into the fold.  It means actually hiring patients to work for pharma. 

Just because you can’t build a playground or bake 1,000 cupcakes, doesn’t mean that you don’t have a voice.  Every patient matters, regardless of illness severity, and whether medications work for you or not.  Sometimes opening a jar or a door, of climbing a few stairs, is the best we can do.  If medications promise more than that, then that is what they should deliver.  We all have to be realistic.  Granted, climbing stairs and opening jars isn’t sexy, but that’s the reality for so many of us with RA.  

video

Tuesday, January 5, 2016

2015: Year In Review

I contemplated not doing a year in review post this year, considering the way the year ended.  I really don’t want to dwell on the past, and what has happened recently has been incredibly painful.  But I also want to see exactly where I’ve been in 2015, in the hope of figuring out where I want to go in 2016.

2015 was the first full year without my dad, and I really opened up around the details surrounding his death:





I had some highs and lows health-wise, including getting a cortisone shot in my hip that changed my life for the better, and struggling with medication and insurance woes:





My relationship took a positive turn (we got our first place together), and then a very negative one (we broke up):




I got to travel a lot, gave an Ignite Talk at Stanford Medicine X, and did a lot of advocacy work, which were some of my happiest and proudest moments this year:




And I struggled with starting my career and finding the way back to myself:





It’s crazy the difference a year makes.  At the beginning of 2015, my boyfriend and I got our first place together.  2015 came to an end with a breakup with my boyfriend of three and a half years, and a move back to Michigan to be closer to my support system, and hopefully start a new life. 

Of course, these aren’t all of my posts from 2015, but these are the ones I felt were worth highlighting.  You can review the year on my blog if you are interested in other posts that were not included in this review post.

And, as I always do, I am sharing with you a list of the books that I read in 2015:

1.       “The Life-Changing Magic Of Tidying Up” by Marie Kondo (NF)

2.      “Fabulupus” by Jodie Nimigon-Young and Jessica Kundapur (NF)*

3.      “Common Fire” by Laurent A. Parks Daloz, Cheryl H. Keen, James P. Keen, and Sharon Daloz Parks (NF)^

4.      “Tampa” by Alissa Nutting (F)

5.      “Selena’s Secret” by Maria Celeste Arraras (NF)

6.      “On A Farther Shore” by William Souder (NF)^

7.      “The Vanishers” by Heidi Julavitz (F)

8.     “Sick Idiot” by Ashley Boynes-Shuck (NF)*

9.      “The Writing on the Wall” by Regina Holliday (NF)*

10.  “To Selena, With Love” by Chris Perez (NF)

11.   “The Perfect Letter” by Chris Harrison (F)

12.  “300 Sandwiches” by Stephanie Smith (NF)

13.  “League of Mortals” by Duncan Cross (F)*

14.  “United Breaks Guitars” by Dave Carroll (NF)

15.   “Grey” by E.L. James (F)

16.  “Afraid of the Dark” by Tom Henderson (NF)

17.   “14th Deadly Sin” by James Patterson (F)

18.  “Suffering The Silence” by Allie Cashel (NF)*

19.  “Being Mortal” by Atul Gawande (NF)*

20.  “On grief and Grieving” by Elisabeth Kubler-Ross and David Kessler (NF)

21.  “The Day the World Came to Town” by Jim DeFede (NF)

22.  “Girl In Glass” by Deana Fei (NF)*

23. “Wide Awake And Dreaming” by Julie Flygare (NF)*

24. “NYPD Red 3” by James Patterson and Marshall Karp (F)

25.  “Why I Wore Lipstick To My Mastectomy” by Geralyn Lucas (NF)*

26. “The Murder House” by James Patterson and (F)

27.  “The Magic Strings of Frankie Presto” by Mitch Albom (F)

28. “Still Alice” by Lisa Genova (F)*

29. “Inside the O’Briens” by Lisa Genova (F)*

(F) – Fiction
(NF) – Non-fiction

* Books specifically of interest to chronically ill readers
^ Academic books/books for school/my research


Tuesday, December 29, 2015

Someday, Someday It Will Be Okay

I don’t avoid talking about difficult things on this blog, but sometimes I need time to process and think through things before I talk about them.  So now’s the time to talk about the fact that my boyfriend of three and a half years and I broke up, and as of a few days ago, I’ve moved back to Michigan.

I’m sad.  More than sad.  But I also realize that maybe my ex-boyfriend would never be the partner I really needed him to be, and maybe I never would have been the partner he needed me to be for him.  That’s a hard realization after almost four years of dating someone.

I’ve also realized that I can feel bad about myself without anyone making me feel bad about myself, and I can handle my stuff alone, and I don’t need to be with someone who says it will be okay because I am the one who has to make it okay.

Part of me thinks that it’s really hard to judge a relationship on a time in our lives that was so difficult.  We moved from Michigan to New York, I started a new academic program, my boyfriend struggled to find work, my grandpa died, my dad died, after spending a year and a half living with my boyfriend’s dad, we moved into our own place, I got a job, that job ended, I got a job, and that job ended.  That’s a lot for anyone to experience in that amount of time.  You think that when you’ve made it through things like that, you can survive anything. 

Maybe things would have been different if we lived somewhere neutral, where neither of us was surrounded by our family and friends.

Maybe things would have been different if my dad hadn’t died.

Maybe, maybe, maybe.  Maybe not.

I’ve come to the conclusion, which I probably should have figured out a while ago, that I don’t think I would ever truly be happy in New York, even if I had the best job and the most loving and supportive significant other.  And I’ve been lying to myself for a long time, because when I have envisioned my future, I have envisioned it in the Midwest.  And I’ve wasted too much time listening to others put that choice down, even when my heart and my head both knew that, that was the best option for me.

I am filled with so much guilt and regret that I wasn’t there when my grandfather died and I wasn’t there when my dad died, and while maybe that guilt is misplaced, I don’t want to feel that way again.  And I don’t think I could take getting another call like I got when my grandfather died and when my dad died. 

I’ve never felt like New York was home.  I’ve been surrounded by millions of people all the time, and I’ve never felt so alone.  The pressure to be everything all at once is too much.  And the truth is, I wasn’t my best self.  I lost my best self in the constant wave of strangers that surrounded me.  While in Michigan I was a hustler, in New York, I wasn’t even average.

Somewhere along the way, I became totally couple focused.  It wasn’t just about me.  It was about us.  I put us first, instead of me first, which is stupid when the other person is focused on themselves first.  And when I started asserting my wants and needs, that just wasn’t okay. 

A relationship takes two people.  And if two people aren’t in it, it’s not going to work.  A lot was put on me, but chances are, this was inevitable, whether it happened now or later.  It’s just hard when you truly believe that, that person is the one, and then you find out that they’re not. 

It’s also hard because I was so na├»ve and so caught up in it all that I didn’t think this person was capable of hurting me.

When we laughed, we laughed hard.  And when we cried, we cried hard.  But lately, there’s been too much crying, and I’ve done most of it.

Right now, I’m not okay.  There are things I have to work on, mostly focusing on myself and putting my time and energy back into the things that used to make me really happy.

I’m not going to apologize for my illnesses, I’m not going to apologize for my dad dying, and I’m not going to apologize for being me.

Not only did I no longer recognize the person I was with, I no longer recognize myself.  We were two ships passing in the night.  Two strangers living parallel lives. 

I took second string to everything and everyone around me.  And I don’t want someone who is going to put me first as a favor.  I want someone to put me first because they genuinely want to.

I also want someone who isn’t going to rush me through my grief over my dad’s death, especially someone who has been through a loss of a parent themselves.

This is not where I thought I’d be at 30.  Two Master’s degrees and a PhD, uncoupled, unemployed, and moved home to live with my mom.  But things can only go up from here, right? 

I kind of feel like Annie in “Bridesmaids”.  I’ve hit bottom.  But as I always do, I’ll get up, dust myself off, and move forward. 

I am going to leave you with the lyrics to a song that I just discovered, that really speaks to where I’m at right now:

“I know they say, you can’t go home again
Well, I just had to come back one last time […]
You leave home, you move on
And you do the best you can
I got lost in this whole world
And forgot who I am
I thought if I could touch this place or feel it
This brokenness inside me might start healing
Out here it's like I'm someone else
I thought that maybe I could find myself
If I could walk around, I swear I'll leave
Won't take nothing but a memory
From the house that built me”

“The House That Built Me”, Miranda Lambert 

Wednesday, December 23, 2015

My Life Through Someone Else’s Eyes

I’ve been feeling kind of down lately and there’s a lot I’ve been trying to deal with.  I’ve needed a pick me up. 

I’ve allowed other people to treat me badly, and what I’m realizing is that I don’t need those people in my life.  I can make myself feel bad about myself all on my own.  I don’t need other people to do it for me, especially when I don’t deserve it. 

Through all of my traveling this past fall, I had a lot of amazing experiences, and it was the only time that I’ve really been happy in the last several months.  Two have been particularly special.

The first is that, because I gave an ePatient Ignite talk at Stanford Medicine X this year, Stanford sent a documentarian to New York to videotape me, sort of chronicling a day in the life of living with chronic illness, for an introduction video that they played before I went on stage to speak. 

I have to be honest, I was really nervous about this.  The last time I had a video camera in my face, I was in sixth grade, working on a group video project, and every time the camera was turned on me, all I could do was laugh.

It’s also a bit stressful to let a stranger so intimately into your life without really knowing them ahead of time.

We were able to coordinate so that the documentarian came to my doctor’s appointment with me.  I had to get special permission from the hospital and my doctor, but I think it was great to see that aspect of my life. 

In the end, it was an amazing, adrenaline-filled day.  And I definitely made a new friend in the process.  Filming with the video person actually felt really natural, and we bonded and talked a lot in the moments that we weren’t filming.   

So I wanted to share that film with you.  I was trying to wait to share it along with my Ignite talk, but I’m not sure when that is going to go up. 


The other experience was becoming a member of Regina Holliday’s Walking Gallery of Healthcare.

I’ve been wanting to be a part of it for many years, and the day finally arrived. 

Coincidently, the blazer arrived right as I was leaving for my last conference of 2015, so I feverishly opened the box and took it with me.  I wore it, and will continue to wear it, with pride.

I had sent Regina some ideas about my story and what I thought that might look like through art, but I never could have imagined that my blazer would turn out the way it did.

The painting is of me, traversing a ladder.  Half of me is wearing a graduation gown and the other half of me is wearing a hospital gown.  The ladder evolves into two rungs, one that is made of diplomas and the other that is made of bones. 

It’s so profound.  And it tells my story so perfectly.  I’ve been saying for the last eight years that I’ve been living two lives and working two full time jobs, being a student and being chronically ill. 


It’s nice to hear that I’m an inspiration to others, even though that makes me a bit uncomfortable.  But it’s nice to be able to see myself through someone else’s eyes and genuinely like, and am proud of, what I see. 

It’s a pick-me-up I really needed, and I’m so glad that I can view these as often as I need to, to remind me of how I got here and why I do what I do.  

Wednesday, December 9, 2015

Finding My Way Back To Myself (And My Blog)

Over the last five months, I’ve been really struggling.  My time has been consumed by a job that I used to love, but had increasingly become toxic.  And then it was ripped out of from under me once again, almost as quickly and easily as it had fallen into my lap.

I promised myself this time that I would concentrate on the fact that the job was only temporary.  And I wouldn’t get seduced into thinking that I could make a career out of it.

It doesn’t make sense.  I know my supervisor will retire in the next few years, and the person that they hired after my first stint, talks openly about the fact that he will retire in a few years as well, so I can’t figure out why they wouldn’t want someone young and fresh to groom to make a career there.  But I guess that’s not my choice to make.

It seems that the problems of the patients that I was dealing with consumed me.  When I first started working there, I was so pumped and energized, and felt like I was really helping people.  But then things started going awry, patient complaints got worse and came in much more frequently, and I was increasingly having to put out fires that I didn’t cause.  But that doesn’t mean that I was ready to throw in the towel, not by a long shot.

But in that time, everything else has fallen by the wayside.  My blog has suffered, my writing for the other blog sites I write for has suffered, and the only time that I’ve been truly happy is when I’ve been doing patient advocacy work, going to conferences, being around other patients, and speaking.

Sometimes life throws us opportunities.  And I am grateful for the opportunity that I was given in my previous position.  It has taught me about myself, and what I do and don’t want to do.  First and foremost, I want to help patients navigate their healthcare.  I want to be part of the solution and not part of the problem. 

When my first stint came to an end, I was devastated.  However, I looked at it in two ways.  One is that the offer came at a time, a few months after my dad died, that gave me the ability to get out of bed and have somewhere to go every day, when I easily could have disengaged completely.  It gave me a purpose.  And two, then I had time, just as school was getting crazy and coming to an end, so I was able to finish strong.

This time, I was also devastated, but not surprised.  I worried all along that something would happen that would leave me jobless.  And apparently, budget cuts are at the heart of this (at least that’s what I was told). 

I put so much time and effort into this position.  I gave it everything I had, and then some.  And again, I allowed everything to suffer, my relationships included. 

So now I’m working on getting back to what I know and love – blogging, writing, advocacy, and creating small jobs for myself that will hopefully lead to something bigger and better.

I know that wherever I end up, I have a lot to offer, it’s just a matter of finding that place.  I have so much energy and passion, which I put into my last job, and which I will exude wherever I end up next.

I’m not too proud to ask for help, so if anyone has any leads on jobs that might be a good fit for me, please send them my way.

In the end, this blog is called Getting Closer to Myself.  That’s what I’ve been trying to do from the start, is figure myself out, and helping improve the world along the way.

Wednesday, November 11, 2015

Advocacy Of A Different Sort: Justice For My Dad

Where have I been, for like, the last year, you’re wondering?

Other than sharing that my dad died, I didn’t really get into the specifics of what happened.  I wasn’t ready, and was trying to see how some things going on in the background played out.

In an effort to protect those involved, I tried to stay as silent as possible while trying to do as much as possible.  But it has become clear that such tactics will get me nowhere.  And now I am ready to share about this publicly in the hope that sharing this will move things forward in a positive and productive way.

As many of you do know, there was a severe storm in Michigan on August 11, 2014, that caused widespread flooding.  My dad was trying to make his way home from work.  Eventually, my mom could not reach my dad and had a vague description from him about where he was. 

My dad was never 15 minutes late, so my mom became extremely worried, given that and the dangerous nature of the storm, after more time went by and my dad was still not home.  She attempted to file a missing person’s report at all of the local police departments in the area, but they all refused because my dad had not been missing for 24- to 48-hours.

As it turns out, this waiting period is a fictitious rule that has been popularized on TV shows.  It’s encouraging to know that, that’s how some police departments come up with their policies – TV. 

Ultimately, while my dad was noted as missing, he wasn’t put in the state database, which would have prompted law enforcement to look for him.  With him simply being in the county database, nothing was done.

My dad was found almost 24 hours later, dead in his car.  He wasn’t found by the police, but by a man who had seen him (alive) the night before.

For my family and I, the question we will never stop asking is whether things might have turned out differently if the police had been out looking for him.  Of course, those in law enforcement make themselves feel better by saying it wouldn’t have mattered, but they don’t have to live with that question for the rest of their lives like we do.     

There are many things I have done already.  I share this so that if people have other ideas, they can let me know, but I won’t end up with tons of comments telling me to do what I’ve already done:

-         Wrote a letter to my parents’ local police department to express concern about the way the situation was handled, including botched death notification.
-         Had a terrible phone conversation with a lieutenant from the above department, who told me that my dad didn’t warrant departmental resources, which prompted me to write a letter to state officials. 
-         Obtained police report via Freedom of Information Act request, which caused me to question why my dad had not been entered into the statewide database.
-         Wrote letter to state officials.
-         Worked with several offices to see what could be done about this situation.
-         Contacted detective that was assigned to my dad’s case.
-         Obtained death certificate.  Cause of death is listed as “atherosclerotic heart disease.”  The problem with this is that according to this NPR article - http://www.npr.org/sections/health-shots/2015/05/20/408011861/map-reveals-the-distinctive-cause-of-death-in-each-state - atherosclerotic heart disease is the most common cause of death in the state of Michigan.  Do they just throw that on every person’s death certificates when they don’t know for sure?  I have maintained throughout this past 15 months that the cause of death was not natural because if it hadn’t been for the storm and the lack of law enforcement action, my dad would still be alive.  
-         Tried to get in contact with the person who my dad had spoken to on the street where he was found.  Unable to do so.
-         Spoke to someone high up in Michigan law enforcement administration that was referred to me by one of the representatives I was working with.  I was told that legislatively, nothing can be done.  I’ve been told that a law that goes back to 1968 says that people may be entered into the database immediately, but this is not a requirement.  There are two problems with this.  First, if missing persons are entered into the database at the discretion of local departments, this will continue to happen.  Second, there are protections for children and the elderly, but apparently, everyone aged 18-75 doesn’t matter.  I am told that if everyone “missing” is entered into the database, it will be a strain on resources, but this has not proven to be the case in states that have adopted similar legislation.    
-         Decided to no longer remain silent.  Started change.org petition. 

Something I have struggled with over the last year is grappling with this tragedy while also living with my chronic illnesses.  When I first got sick, I selfishly thought that getting sick was the worst thing that could ever happen to me.  Then, when my dad died, the worst thing that ever happened to me, happened to someone else.  That has rocked me. 

I have always been open and honest with my readers, and it has pained me not to share this experience with you.  I have been wanting to.  But I needed to do it at the right time.  Is there ever a right time?  Probably not.  But right now is the right time.

Here’s what I need from you:

I ask that you please sign and share the following change.org petition - https://www.change.org/p/michigan-state-house-michigan-state-senate-pass-neal-s-law

You don’t have to live in Michigan to sign!

I am so grateful to those that have already signed, shared, and posted comments of support. 

I’m working on a book about this experience, which I will hopefully have some time to work on more in the next few months.  I ask that you assist me with this when the time is right.

I have been told that nothing legislative can happen, but I don’t believe that, hence the petition.  What I have told those in the system is that I will no longer remain silent.  I will share this story far and wide until something gets done so that no other family in Michigan experiences what my family and I did.

Although my dad was missing for “just” 24 hours, I can’t describe to you the feeling when you don’t know where your loved one is.  It’s indescribable.  It was the longest 24 hours of my entire life.  So I can only imagine what those people go through whose loved ones are missing for longer or are never found at all.  No family should have to live with the question of whether their loved one would still be alive if law enforcement had acted expediently.

This is the mantra that I will live by in order to persevere although many in power stand in my way:

“Whoever destroys a soul, it is considered as if he destroyed an entire world.  And whoever saves a life, it is considered as if he saved an entire world.”

– Mishnah Sanhedrin 4:9; Yerushalmi Talmud, Tractate Sanhedrin 37a

Wednesday, October 28, 2015

Insurance Is Preemptive, Except When You Need It

For many people, insurance is preemptive, it’s for the what ifs in life.  What if I’m in an accident?  What if I’m diagnosed with cancer?  The list goes on. 

But for me, and most other chronically ill people, having insurance is vitally important.  It’s not for the what ifs but for the right now.  I didn’t ask to get sick, so it’s frustrating that there are so many hoops to jump through, not only to prove that you deserve help, but also that you aren’t playing the system. If you know someone who is hard up enough to fake having lupus or RA, will you please hit them in the head for me?

When I first got sick, I had amazing health insurance.  Because I was a graduate student and teaching, I had faculty level insurance.  I had no premium, and very small co-pays.  And truth be told, a small reason as to why I stuck out my PhD program was that I had insurance that allowed me to walk into any of my doctors’ offices, have any tests and procedures they required, and I never had to worry about what it was going to cost me (and my parents didn’t have health insurance at the time).  I think the biggest amount I ever owed at one time with that insurance was $75.   

I realize now how blissfully lucky I was, and also how blissfully unaware I was of the troubles that plague people who don’t have good insurance or who don’t have insurance at all.  But now, I’m right there with the masses of people who are trying to get adequate health coverage. 

My student health insurance wasn’t the greatest.  I needed referrals for everything.  I paid a $3,600 a year premium, which seems kind of high now that I think about  it, and had co-pays, plus I paid 20% co-insurance.  It was a big headache, especially compared to the plan I had in my first stint in graduate school, but it was insurance and it was guaranteed.  The school couldn’t strip me of my coverage for any reason.   

Because my current employer is not offering me health insurance, I was without insurance for the month of September since my student health insurance through school only lasted until the end of August because I graduated in May.  And because the Exchange required a letter from my employer verifying my on and off employment with them, I missed the deadline to get insurance starting in September (that’s a whole other issue).

I lived through September on pins and needles.  I was able to afford, just barely, my medications out-of-pocket, and received financial assistance for the one that I couldn’t.  And I hoped and prayed that I wouldn’t need to see a doctor, which I didn’t. 

I found a plan that I can marginally afford through the Exchange, meaning that I am getting a great deal on an otherwise expensive plan, but it still means having to really save to cover it every month.  But that’s okay.  I struggled to find a plan that I liked, and more importantly, that my current rheumatologist accepts.  Then, another snag.  My insurance company will be closing as of January 1st, meaning I’m back to the drawing board to find a new plan, and it’s proving a lot harder than I imagined because there are no plans available that are even comparable to mine.  Now why they even let me enroll in a plan for October when they knew full well that they would be folding is a whole other story, and a whole other frustration! 

I’m looking at plans where the lowest deductible is $2,000.  While I would quickly hit this, it means that I have to have that money up front in order to pay for it, which I don’t  Most of the plans I’ve seen also have very high co-pays for hospitalizations, for example, $1,500 after deductible.  That’s just not affordable for someone who has a part-time, temporary job, and could become unemployed at any time.  For me, the hospital coverage is for the what ifs.  In the last eight years, I’ve had two hospitalizations.  But as far as my doctors’ appointments and medications are concerned, those are non-negotiable.  I need those if I’m going to live some semblance of a life.    

I don’t want to get political here, but there is something fatally wrong with the system. Until now, over the past eight years, I’ve had a variety of coverage, but none of them have put me in danger of not being able to afford my rent.  Sure, my health comes first and in the last eight years of being chronically ill, I’ve had to make some sacrifices, but those were more personal than out of necessity.

I don’t want to sound whiny or like a bleeding heart, but this is a serious issue, and I realize now that I am lucky that this is the first time since I got sick that I am facing it.

Right now I am paying $151 a month premium, my deductible is $250, and my co-pays are reasonable.  So some might say that this is the exact reason for why the company is going out of business.

I wish I could go back to being blissfully unaware, but I can’t.  And I can’t keep quiet because the struggle is real, and it’s real for a lot of people, and not just me. 

The other issue at work here is that a lot of employers are keeping employees just below full-time so that they don’t have to pay for insurance.  In my mind, if someone is working 15 hours a week, I get that.  But if someone is working 27, 28, or 29 hours a week, they should be eligible to receive at least something.  In my mind, this shouldn’t be allowed. 

I wanted to write this post long before now, but worried that if I posted it in September and put it out to the universe that I didn’t have insurance, something catastrophic might happen.