The Numbing Wall

I suppose I should start by saying that I won my battle with the insurance company! I apologize that it has been so long since I have written. I could blame it on being in grad school. Or on this increasingly frustrating bout of writer’s block. But excuses are futile. I haven’t written because I haven’t known what to say or how to help. I’ve been busy, yes, but mostly just out of motivation.

It happens sometimes – that brick wall that shows up right when you thought things were going so smoothly. And when the only option seems to be to keep bashing headfirst into that same wall, it’s sometimes easier to just ignore that the wall exists. And that the pain exists. Sometimes the easiest option is simply to shut down from it all for a while and be numb to the whole process.

To sum up the past few months…

  1. I won my battle with the insurance company, but only just after I was told I needed eye surgery immediately.
  2. The scar tissue in my one good eye (the left one) had begun to grow into my vision.
  3. The insurance company then sent me on another wild goose chase about paying for the surgery.
  4. I managed to win that battle, too!
  5. The surgery went incredibly well, and my doctor used a new technique that will hopefully keep the scar tissue out of my sight and away from attaching to my eyelid for good.

So that’s my health right now: I’m back on my Remicade treatments, my vision is back to my version of normal (plus my left eye is detached from the eyelid!), and I’ve even been able to start back doing yoga and reading for more than a half hour at a time. Life is going well, even in the statistically average sense.

I have yet to celebrate, though. There’s certainly been several heavy weights lifted from my shoulders, but I feel very calm. It’s not even that I’m waiting for it all to fall apart again, like I usually am when good things happen. No – I’m just moving forward. Step by step. No frustration, no overwhelming joy, and still no anger. To answer my question in the last post, “Where has all the anger gone?” I have to say that it’s been replaced by the numb feeling I described earlier – the one that involves running headfirst into a brick wall repeatedly.

I’ve not talked about this feeling before with others who have autoimmune or other disorders. It’s sort of difficult to describe, really. It’s not that I don’t feel the day-to-day moments of gladness or stress. It’s just that on a scale from 1 to The Story of Us* I really only hit about a 0.5 these days. And when it seems like a 1 or a 2 might be in the cards for a certain conversation, I’ll make a joke to tone it a notch.

I wonder sometimes if anyone else ever feels (or doesn’t) this way. Is it a coping mechanism, or just normal life? Maybe for those of us who know long stretches of intense emotion the day-to-day lack of drama starts to feel like a void when in fact it is just the art of being normal. Statistically average. Except that which may seem statistically average in America is not the same for the entire world. My worries about medication for my RA seem so small compared to the daily worry for much of the world’s population about being able to have food or clean drinking water. Maybe instead I should rejoice in my ability to relish spikes of great emotion, because I live a life where I can have moments of selfishness, where narcissism is a growing problem, and where “entitlement” is a pet peeve of those who drive cars and go to the movies.

I think that perhaps we are all caught up in a cycle of moves based in survival and emotions spent too quickly. On the one hand, we see emotion as a weakness, but is it not truly a privilege? Those who cannot afford to drown in emotion are those whose thoughts must always be on survival. And yet those who act only on emotion often commit the most selfish, self-serving deeds. What is this luxurious set of impulses that separates us from other animals? How do we communicate them to each other through complex words and sentences that are truly what separate us from each other? Why does running headfirst into the brick wall of a problem start to make me feel nothing at all?

I usually like to finish my posts with a positive message of motivation. But this time, I ask instead to hear about your motivations. Not because I need compliments (please refrain from them, actually). Not because I want a pep talk. No, what I want is to hear about what motivates you. What are your coping mechanisms when things are tough? What motivates you when things are normal? Where do you turn when life stagnates?

What is your numbing wall, and how do you get past it?


Where has all the anger gone?

With the vast popularity of shows like CSI or Law & Order, we’ve grown accustomed to hearing common criminal justice terms like “mandatory sentencing” or “contributory negligence.” One term has always struck me as odd: “victimless crime.” I have never been certain whether a crime could ever truly be victimless. Is the person committing the crime not harming himself? The term further begs the question: Can there be a perpetratorless crime?

There are several stages of grief that a person undergoes after losing someone dear. Likewise, there are stages a person undergoes after experiencing a trauma. Both can involve stages of anger, denial, numbness, fear, guilt… The list goes on. In my experience, I have only understood the stages after I’ve passed through them — sometimes years afterward — and their passing has never signified a decided end to the experience. Instead, the overlapping stages have become almost cyclical, and still usually only recognized after-the-fact.

Last week, I went in to see my doctor after experiencing acute eye pain, which turned out to be excessive scar tissue growth. In one month, the tissue went from being stable to threatening the vision in my one “good” eye. The disappointment was staggering, coupled with a dizzying nausea at the thought of yet another painful surgery. It will be somewhere around my 15th eye surgery since 2008, and I am none too pleased that it comes so soon after nearly a year of promising eye stability. No, this quick change for the worse has come not from my own negligence, but from insurance denial of my RA treatment’s medical necessity.

I know what most people’s first reaction would be to this: anger, denial, fear. Mostly anger, to be sure. After years of inching forward, it would only make sense that I be furious with this company for denying my much-needed treatment, thereby threatening my vision. Yet while I certainly feel some fear and anxiety, anger has long been a difficult emotion for me to conjure. Yes, a doctor prescribed the medication that started all of this; her intention was to help. Yes, this surgery is unplanned, unwanted, and greatly frustrating; I have walked this path before. Yes, the insurance company is a clear villain in this difficult scenario; the friendly representatives have not caused me personal harm.

What does one do, exactly, when there is no clear perpetrator to an egregious crime? Who deserves my fury? Where might I lodge insults and create calamity? When is it appropriate to unleash my grief?

Grief requires anger. Emotional trauma deserves reparation. And yet, no single person seems guilty. And no fury fires in my gut.

I have read quite a bit on the stages of grief and of trauma, and I find so little to be said of those who push past and move forward. Not all who move forward have also moved on. There’s so little to be said for those with no clear demon. Not all who fight have a well-defined foe. And so little has been said of those who fight inside the lines. Surely not every battle must be bloody and public.

For now, I turn to the cogs and file a complaint with the appropriate department (the insurance commissioner’s office). For now, I wait within the delineated rules and continue moving forward. For now, I ignore the dragonless void that leaves me swordless, and I hope the democratic system I love will not fail me.

Dealing With (Insurance) Denial

Every year seems to start up a new game with my health insurance company. If they do not send out a new statement of benefits, I have to track it down on their website or call in to request a copy. Depending upon the new government regulations, new treatments (finally) considered scientifically viable, and the general shifts of the medical industry, premiums will go up and coverage will change.

This year, I seem to have hit nearly every snag possible with my health insurance. Increased premiums, claim denials based on semantics, lack of interdepartmental communication freezing appeals, misfiled paperwork, and even dropped coverage without notice during a hospital stay,,, I feel as though I have seen it all! And I’m not the only one.

So many friends have complained about the state of healthcare in the United States, and often the complaints center around the functionality (or lack thereof) of the health insurance industry. While I have not extensively studied healthcare solutions, I do understand the need for reform. More importantly, I understand the need for more personal assistance.

From the perspective of the individual, health insurance and the companies who provide it can be daunting. Speaking to a customer service representative does not guarantee they can explain what is on your account. Nor does speaking with your doctor’s billing department guarantee they know what is on your insurance account. Just today, I spent quite a bit of time relaying information between my doctor’s office and my insurance company, only to discover that neither side had a clear idea of what the insurance filers were looking for on my claim and appeal. Yet that’s a step farther from my previous insurance company who refused to speak with me because my policy was through an employer!

The institutional and bureaucratic failings of health insurance companies appear vast. While the fight in Congress continues, the larger reforms are not currently helping the individual make sense of it all. They are not helping me understand my company, nor are they helping me submit claims. More importantly, they are not offering me peace of mind each night as I go to sleep with a five-digit number gnawing at the back of my brain because my mainstream rheumatoid arthritis treatment was not deemed “medically necessary.” So that got me thinking…

What can I do next?

To a big insurance company, I am just another drain of money. To my doctors, I am a patient who cannot pay, and sympathy does not make up for thousands of dollars owed. To my family, I am a loved one they wish they could help. And to myself, I am one big, jumbled mess!

In order to keep from curling up in a ball and wasting away, I have found that even the biggest messes are manageable with a plan. So I have set out a few potential ways to get help when your current insurance company is just not following through.

Plan B (Or C, or D…): What options do you have when your current insurance falls through?

  1. Go up the ladder: Customer service representatives can only see and understand so much about your account. Ask to speak with a supervisor, and be polite! I cannot tell you how much more smoothly these conversations go when you are calm and cordial. Remember, they are there to help, and usually they will try to help as much as they can.
  2. Talk with your doctor/pharmaceutical company: Your doctor’s staff will often know a few ways to get financial assistance. For example, several medications have financing programs to help people in need. The RA treatment I receive, Remicade, has a patient rebate program called RemiStart that helps lower the cost of treatments for those who have insurance willing to pay a portion of the cost. Speak up, ask questions, and figure out if there is a financial assistance program you can use.
  3. Shop around: Maybe the plan you have isn’t the best one for you. Go online or speak with customer service to request a copy of your benefits package. Talk to your friends about their coverage, discuss plans with your HR department, and even talk to the billing department at your doctor’s office to see if they have any suggestions. Health insurance policies are not one-size-fits-all. Talking about your personal predicament with someone else who better understands the plans can be a great help.
  4. Consider getting secondary insurance: Even when you have a primary provider who will pay some of your medical bills, the out-of-pocket expenses can still be painful. The trade-off is another monthly insurance fee, but the benefits of secondary insurance may outweigh that. Search online or ask friends about their plans to see if secondary insurance at another company might be a better option.
  5. Raise funds through crowdsourcingThis is a newer option I have seen popping up on social media sites and email chains. Companies like Give Forward allow you to create a page where friends, family, and strangers can donate to your cause or offer words of encouragement. These sites do take a processing fee from each donation, but might be an option to help collect from your friends and family who want to give.
  6. Reach out to loved ones for emotional support: This one just might be the most important. We often get so bogged down in the cost of care that we forget to appreciate the care we have. Family and friends can help us carry those burdens and remind us that the rough patches make for stronger relationships and greater life fulfillment.

At the end of the day, dealing with insurance companies is frustrating, and it gets worse each time they deny a claim. So take a step back, look at your options, and make a plan.

Please feel free to leave insurance tips in the comments section!

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