I Don’t Speak Health Insurance

Documenting the pure insanity of #youcantmakethisshitup

It took 1.5 hrs and 13 phone calls this afternoon to learn that no one working in health insurance or health care communicates with anyone.

At 2:46 pm we received word from doctors (YNH) that Oo’s procedure will not be covered by our health insurance (HPHC). They quoted us a ridiculous fee-for-service price. (Half the value of my house kind of price.) 

Between the 2:55 and 4:46 I made 13 phone calls. 

Call #1:HPHC member services informed me a request for services was never made by YNH.

Call #2: YNH to reach out to original provider who informed us of denial. She explains that not only did HPHC deny coverage they denied additional means to receive coverage including extra letters of medical necessity and peer to peer (doctor to doctor) review. 

Call #3: HPHC claims. Can’t file appeal, because they say request for service was never made.

Call #4: YNH seeking women who made original request for service. (She is gone for the day.) 

Call #5: HPHC Member Services request supervisor who tells me same thing, but does suggest calling YNH med records department. 

Call #6: YNH Med Records get read detailed accounts of three phone calls made from YNH to HBHC including procedure codes (42382) and diognostic codes R10.8 and R108.4. YNH tried both to get HPHC to cover procedure. 

Call #7: Patient Advocate line at HBHC. Learn that 42382 will be denied. But other diagnostic codes might be able to be used for possible approval. 

Call #8: Call YNH back get receptionist. She explains I need to call provider services line at HBHC.

Call #9: HBHC provider service line refuses to speak with patients and transfers me to member services. Ask for supervisor. 

Supervisor is sending letter to YNH that will explain different diognistic codes to use for potential coverage. (The letter will take 3-5 business days.) Supervisor also says to call back provider line, and don’t tell them you are a patient (I’m not the tiny human is) and immediately ask to speak with supervisor.

Call #10: Back to HBHC provider services. Speak immediately to supervisor who informs me that 42382 is problematic, and that all phone calls between YNH and HBHC are recorded, but she can’t access them for me because I’m not a provider. I get direct contact line to give to YNH. HBHC says I can’t have anything in writing because the only documentation of exchange is in recorded phone calls, that I can’t have access too, because I’m not a provider. 

Call #11: YNH leave voicemail with direct contact information for HBHC provider services. 

Call #12: YNH med records to get this insanity documented in the notes for Oo.

Call #13: Leave long detailed message on doctors line explaining all of this, and asking for documentation of request for services. 

4:46pm: Everyone is gone for the day, and I just get to stay in this nightmare.

The irony is fucking profound. One of the reasons we have tortured Oo with gluten for the past 3 weeks is to get a positive diagnosis so continued care will be covered. The procedure we were told will be required by the health insurance company that won’t cover the procedure. 

Mindful Living – I’m Working on It 

I’m not great at slowing down, but when I do say ‘no’, I cherish the results. It’s not easy saying no. I am getting better at it, the ‘no’ part. We all are getting better at saying no. 

I’m a graduate student-professional-non profit board president-advocate-wife-mama-friend-wifey-sister-auntie. That’s a lot of things to be everyday. It’s who I am. A slow life never has fed my soul. Ironically, less is what we need now more than ever.

I said no to a sleepover last night. It was totally fine. I reminded O what her weekend plans were, and that a sleepover would interrupt those plans. She totally understood, and it wasn’t even an issue. On her weekend list is finishing the Harry Potter books, and journaling. #bestlife 

When I leave them alone they find their own enjoyment.

Today we said no to plans, and I gave up expensive dinner tickets. And for the first time in a long time that felt okay. It felt okay to say “I can’t wrap my head around that.” We spent an hour working on OT, went grocery shopping, did bead work, folded laundry, and went to the lake. I bathed all of the tiny humans and the dog. (Winning, he totally smelled.)  We ate egg sandwiches for dinner. Everyone went to bed with kind words and grace. 

Time is such a bizarre thing. We only get all of these minutes to live. I want to always do all of things. It’s challenging to realize how unstoppable I may seem, and also simultaneously feel the moments I need to stop. We love our quiet time. 

I’m entering a moment to redefine this season, and I get to decide what that looks like. I want more Saturdays without plans. I want more moments for bead work. I want to make lists with O in our bullet journals that define our weekend goals. 

The best most invaluable part of slowing down is realizing I live with my best friends. 

Tomorrow we have plans to watch “Anne with an E”, and write thank you notes to the teachers in our lives. These are things I would have previously told you I didn’t have time for. They are the most valuable moments of all of the minutes I get to live. 

Creating Space 

I’ve studied space. How we plan it, and the intentional decisions people make to exclude specific populations from specific spaces. 

I live in a tiny human friendly home. We own zero possessions that are priceless, and that’s really an excellent choice for our family. Juice and cheese sticks end up everywhere. We have over flowing book cases filled with early readers, graphic novels, and picture books. We have hooks that are low enough for tiny humans, and we have a tiny broom. We have a tiny kitchen in our big kitchen. We have pearl beads as our coffee table centerpiece. Our wall art was made by tiny hands.

Trapeze work requires a tongue out.

I love these spaces. We work specifically to provide the tiny humans their home. 

We have a small room off of our “formal” living room. We used it as a den. Then we got rid of a dining room, because our family needed a den that fit all of us. Now we have a big den, complete with a new and  fugly sectional couch, a small table in our formal living room, and now an empty small room next to our less than formal living room. (The plans of our house called this small room a library.) 

Jump your wiggles out, love.

This small room sat empty for a month. After almost a decade in higher ed I longed for an office. I’ve worked at kitchen counters, on couches, and in coffee shops. I carry files in my purse, and lose important paperwork all of the time.  The potential was there for me to finally have an office. I was so close, but then I just wasn’t that close anymore. 
The OT was delighted that we had a pull up bar with trapeze rings. She said Oo needs a trampoline…  Now we have what we are affectionatly calling a sensory room, for big movement. The tiny humans love it. 

“If you build it….” – Field of Dreams

Someday I’ll have an office, but now isn’t the time to exclude tiny humans from spaces in their home. 

The Road of The Worst Three Weeks

I think sometimes we fall so many times that getting back up becomes our daily work. I’m not handling any of this with grace. I’m crass, and I’m without empathy. It’s not a cloak I enjoy wearing. No one prepares you for this. 

We thank everything we believe in, whatever we pray for healthy babies. As parents we weather storms that make our hearts hurt and challenge our ethos. No one prepares  us for the most challenging choices we will make. These are epically poor choices, but we need the recognition of these poor choices. 

Seven days gluten free and we were starting to see small, but measurable progress. After adding all the great gluten again, we have a baby who can barely get dressed. It took her five dresses to find one that didn’t make her feel “crazy frustrated.” Her words, not ours. 

I feel like a crazy person, again. If this biopsy isn’t positive I will have zero idea of where to start, again. I feel like a crazy person for begging for a positive diagnosis. It is not because I need to feel grateful for answers, but because I need to scream from rooftops for a solution. 

I know we have a baby who is struggling. We are just lieing to her at this point. Telling her the snacks we give her are gluten free, but what if that isn’t the answer, and what if it is? 

Celiac doesn’t only  come with a gluten free lifestyle. It comes with bi-annual diabetes testing, and cancer screenings. It comes with teaching a girl to navigate a world… so even a positive diagnosis is complete shit. 

She’s anemic right now. Her body isn’t breaking down iron in foods, because she is sick. Anemia makes her tired, cranky, irritable. We have to make sure she stays this way for 21 more days. 

We need a solution. The solution sucks. 

When You Can’t Actually Make This Up…. 

We have been gluten free for one week. As soon as her labs came back the pediatrician informed me to make sure Oo has a gluten free diet immediately. I went grocery shopping within the next hour, and spent the weekend sterilizing our kitchen. 

I also have spent a week talking about a gluten free lifestyle with Oonagh. I’ve given her language to always tell grownups she has Celiac. I’ve researched, and communicated every new finding with my family. She looked at the Starbucks bakery display today, and said that’s gluten. 

My friends bought and purchased fancy gluten free bagels for our weekly play date. 

I’ve meet with a family nutrition counselor, and an Occupational Therapist. Give me a job, and I get it done. 

After a million phone calls, and hiring a patient care advocate (PCA) we were rushed into a pediatric gastroenterologist today. (Seven days after receiving labs that indicate Celiac. Prior to PCA intervention I was given an appointment 12 weeks out.)

We learn that Celiac can only be confirmed via endoscopy. We learn that a gluten filled diet must be present to get a positive biopsy. We learn that one week gluten free means we now need to reintroduce gluten for 25 days to get a positive diagnosis with endoscopy .

Puppies and Besties brightened our Friday.

We learn that without a diagnosis we can never ask for schooling accommodations. We learn that without a positive diagnosis we can never receive coverage for Celiac health care. (Everything from diabetes screening to counseling can and will be denied.) I quickly realize that without a diagnosis I can’t advocate for her. 

So the speacilist said “yes these lab results are very consistent with Celiac, and yes her symptoms also suggest Celiac, but I can’t diagnosis.” We also heard “all of the indicators of Celiac are present.” 

There is no choice to be made here. I asked my spouse three times on the ride home if we made the right decision to reintroduce gluten and proceed with testing. He confirmed that we made the only choice. 

I gave her gluten filled bagel tonight, and it made me sick. I have to poison this sweet girl for 25 days to be her advocate. You can’t actually make this shit up. 

High Call Volume: The Exhaustion of Advocacy 

My actual adulting job is to advocate for a population of “high-needs” or “at-risk” students. In reality, I have a group of students that is woefully underprepared for higher education, and they all need help navigating a system that has been unkind to them, and higher ed institutions are a piece of a system they do not own the vocabulary to navigate, or the cultural capital to figure out on their own. Insert me, and these students now simply have a teammate by their side to help them figure it all out. It’s an awesome gig. I care deeply about teaching and learning, and advocating for students who desperately need to have quality learning experiences is extremely rewarding. 

Advocacy is also extremely exhausting. 

Oo needs appointments with several speacilists. These appointments are all over the state, and navigating availability, coverage, and need is an extremely time consuming responsibility, and super emotional. A friend put it perfectly “when you have someone you love who needs immediate care, and you are responsible for doing all of that health care coordination work, you simply do not have any moment to do the emotional processing work that you need to do.” Spot on, friend. 

Every appointment needed requires a minimum of three phone calls. The first one you tell your story, and then you are transferred; you now tell your story again. The second one is a confirmation of services needed, and the collection of pre-appointment paperwork. The third phone call is to insurance. You are transferred a minimum of three times. That’s if it all goes well. Then you get authorization numbers, and call the provider back. After, you fill out all the paperwork, and the call the provider back to ensure they have received the paperwork. The above process is if everything is actually going in your favor. 

It never does. 

Finding providers accepting under 5 patients in-network is a special freaking challenge. Finding providers who do not have 6 month waitlists adds to the terror of this work. I have wanted to scream “she’s sick now, we need a plan before November.” I’ve completely given up on finding people close to home, and I no longer even suggest times that would work well. 

Gluten free cupcake after OT today.

I am certain rouge bills will start to show up for services that I received a pre-authorization number for. I will obviously have to call again. 

This week, I will drive over 200 miles to appointments. I will spend a small fortune, and be really grateful that all of my work is getting the care she needs, but here is the irony I actually had to enlist help. (I needed a Finn in the medical field.) There are professional patient care advocates. People who you can give dollars to, and they basically find you providers. (This system though….) 

After terrible frustration with not finding a pediatric gastroenterologist in-network, accepting patients, and with reasonable wait times, I enlisted help. We have an appointment tomorrow, in the office that originally told me a minimum of 12 weeks to wait. Let’s not unpack that insanity right now. 

Dozens of phone calls later we go tomorrow to the appointment we need the most, and the one that terrifies me. 

I Don’t Know How to Create Her Best Life, and Maybe I’m a Little Scared too. 

These crazy Post Bedtime feels are now frequently finding me in this space. It’s my space, so I suppose that’s okay.

We had the best most amazing day. I do birthday’s big. I’ll never apologize for that. I’m celebrating the lives of the humans I care the most about. I’m celebrating our growth together. I get maybe 14 of these days where I am still invited. (In future years I know I will beg her to come home for her birthday.) Right now, these days belong to us. I do birthday’s big. If I’m not celebrating their growth, their awesomeness, and our love, what is left to celebrate? (I hate questions as a rhetorical strategy, but I’m a hot mess so give me a minute, okay?)
 

We ate in the most fun restaurant today, and everything was about chocolate and waffles. Fancy everything was ordered. I was completely overwhelmed with tiny human joy, and thought this is creating magic, this is living our best lives. This is super amazing, and so much fun.

Chocolate fondue and your best girlfriends. #livingourbestlife

And then…

I thought I won’t ever bring Oo here. They all ordered chicken fingers with waffle fries, which was our running joke that we would drive to Boston for chicken fingers; Oo can’t safely enjoy this space. And if it wasn’t for tiny human delight I would have sat too long in those feels. 

After Annie (the musical at the Wang Theater) we headed to Quincy Market. So much fun and deliciousness. I wandered Fanuiel Hall and realized Oo would never be able to enjoy this splendor. Her sissy selected a hot dog, and asked “can I have a bun because Oo isn’t here?” Because she knows our lives are changing. 

When I arrived home the full lab paperwork was in my mail. I now have numbers, and I’m good at data. Listen, this data is crap. There are four indicators in the blood for Celiac, and Oo’s numbers are stupid high for all four. Even the check for a false -positive is present. What’s the most sad, according to Dr. Google is that the antibody that is produced during intestinal damage is really high. My sweet love is really sick. 

I lived our best lives today. Oo was taken care of by my dad, and they spent two hours at Whole Foods selecting safe food, and he only empowered her safe choices. My sick baby was in the best of care, because I needed to go celebrate her sissy. The juxtaposition is a confusing and disjointed running monologue in my head of competing forces.

I know there are teams of people who do this. My friend Caite dropped off a fresh GF pizza from her restaurant last night. There’s a promise to GF donuts. My inbox is full of support. I know we will do this… we will actually kick ass at this. That’s how we do. 

I’m just not at the ass kicking phase. I’m terrified of her next appointment, and I know we are looking at anthesisia for biopsies. And while I sing “Happy Birthday”, I’m hiring a babysitter because I don’t know how to navigate a pasta dinner, yet. 

So, I do birthday’s big. I celebrate their lives, because I love them more than I even know how to define. Today, I realized her birthday’s will look different, and I haven’t figured out how to kick ass at that yet. 

Challenging AF – Or maybe we just need to speak her love language. 

I took an anthropology course in college. The first assignment was to define your family culture. I realized after examining our daily interactions as a family we are a very lovey family. We say a lot of “I love yous.” We also always kiss and hug hellos and goodbyes. We depend on that physical touch to ground us home.

I am thinking about my tiniest who is struggling a lot right now. She randomly looks up at me several times a day and says “I love you.” It’s not prompted. She just tells us. We love you too, sweet Oo. 

I’m suppose to be super grateful right now. But I’m not. Someone actually said “well it’s not cancer.” Ummm shut the F up. This sweet baby who randomly tells her people she loves them has to change her world. Or really, I do. All of this work is going to be mine. And I kinda want to call bullshit to that. 

My biggest worry is how to raise a strong girl who (to survive) has to have a tricky-rule-following relationship with food. Our society fucks up girls body positivity, food relationships, and general confidence. I have to combat all that regular shit, and still raise her to be completely badass with a tricky relationship with food she needs to have.

I have to teach her to advocate for her body. I have to teach her this in the face of naysayers. I’ve already heard “gluten free is a fad.” I’ve already heard “we don’t accommodate that.” I’ve already heard “it’s not that big of a deal.” I’ve already heard “it’s probably not real.” Well, friends… this is as real as it gets. 

I decided from second one this wouldn’t be a secrect from her. I told her she can’t have a hot dog bun because it is filled with gluten. She can’t have “blue cereal” (Crispix) anymore because it’s full of gluten. Twenty-four hours in, and this sweet loving baby already knows she can’t have chocolate donuts. At three years old that’s a devestating loss. I told her sissy we couldn’t go to Moe’s with Oo. She already knows that her lunchbox is gluten free. She already knows she needs to bring her lunch box with her. 

I learned today she likely sleeps late because iron deficiency causes exhaustion.

We had a lovely family dinner last night. Her dad kept pasta salad to the side. She told me today “daddy had spiral noodles with gluten.” So we will change that, obvs. 

It’s like all of her great love is figuring out how to still love in a world that isn’t going to be kind to her needs. And the biggest work is going to be to keep reminiding her that we love her, and that she is sheer perfection, in spite of Celiac. The biggest work is going to be keeping her great love alive. 

I guess my first plee to the whole damn world is to be kind. Because ahead of me are birthday parties, pasta dinners, play dates, and school that I have to navigate with the most loving tiny human who is deadly allergic to half of our food. Ahead of me is every kid with gold fish, and every person who doesn’t think this is real. 

I would be negligent in this rant to not mention the greatest group of women I know, who prepared a GF play date on day one. Who only listened to my woes. Who only understood when I said I was a “hot mess.” These women accepted that answer. And who before I am able to, simply took this news in stride. And I think all of the great love sweet Oo gives out, gave back. 

Our culture is love. I suspect in this new journey we will need extra love. We will need kindness, and forgiveness, and acceptance as we navigate and build our new normal. 

Suspect #1: Gluten

I threw away an ear of corn today instead of the husk I had just pulled off of it. That is kind of how I’m operating these days. A little disjointed, a lot of half listening, and reminding myself to “fake it until you make it.” I wasn’t really prepared that searching for answers would also make me feel absolutely insane. 

She had a battery of labs done and the results are in. She has “mature” celiac dieseas, and super low iron, which is a symptom of celiac. It’s fine. I know it’s fine. It’s a problem with a solution. I started to read the risks of celiac, and I decided that wasn’t helpful right now. 


I’m struggling. I know it will be fine. It’s fine. The pediatrician “thinks” this might be the cause of some of the scary and challenging behavior, but we can’t know for certain until about 6 months gluten free, with zero cross-contamination. The pediatrician insisted we still seek OT and psych evaluations, so we are still looking for things….. searching is exhausting. 

I know I should be feeling grateful, and I know I will get there, but I’m just worried for her right now… and I haven’t processed all my feels. I immediately went to wondering how do I teach her to take care of her body, even when she is not with me? How are bagles her favorite food? How do we go specific places and do specific things knowing that our whole world loves all the great gluten? 

We will figure it out, we have to. I’m just in the long sigh moment, after receiving some news that will change our lives.