Cheaters Never Prosper

Let’s face it. Elimination diets are hard. Really hard. So let me recount what has happened on the days I’ve slipped up….

Cheat #1: Sushi. I knew gluten was something to avoid, sure, but I didn’t altogether believe the whole “grain-free” need. Until I ate sushi one night. My joints ached for three days.

Cheat #2: Donuts. I was trying to be so good. I went to Revolution Doughnuts (who, by the way, have delicious low-grain/low-gluten donuts, if you don’t have a nut allergy). Unfortunately, they were out of the “dough-nuts,” so on a whim I got a few of my favorites. Cake-style Vanilla Bean, yeast-style Cinnamon Sugar, and a Cinnamon Apple Fritter. In just a few hours I was exhausted and achy. It lasted for days.

Cheat #3: Choco-Pie. Not having eaten all morning, I couldn’t resist this Moon Pie-like treat a friend had brought in for class. I went home immediately afterward and slept for three hours in the middle of the afternoon.

I saw the rheumatologist last week, My RA is at a moderate level, so we’re having to up my dosage of Remicade to the highest possible amount and consider new treatments. I spoke with my doctor about the AIP (autoimmune protocol) diet I was trying, and she said it was a great idea.

I know what I need to do. I know what foods I need to avoid.

It’s difficult.


Once More Into the Breach

eyesI’m sitting in a hotel room in Miami, mere hours from the next chapter in what has become a seven-year climb. I suppose I could think of my steady stream of surgeries as a mighty war against the scar tissue that continues to threaten my vision. Tomorrow’s surgery is but one battle of many in a long siege that the guerrillas seem to keep winning. Each time the surgeons believe we’ve beaten back the insurgents, and each time the inflamed warrior rises again to conquer!

I could see this as a mighty war, but no. Instead, I choose to see these trips as tricky crags on the mountain of my life. A mountain I have no intention of quitting, no matter how Sisyphean the task may seem. And Sisyphean the task may yet be…

In May 2014, my Atlanta doctor performed a surgery on my left eye (the one with full sight) to cut back the scar tissue which connected the eye to the eyelid. He stitched a donor cornea over the surgical site, hoping it would act as a barrier to keep the scar tissue from returning to envelop eye and eyelid again. By July, however, the attempt proved to have been in vain.

The tissue has returned in full force by now, and I am seeing Dr. Scheffer Tseng in Miami to try something old, but somewhat new. This time, it is a surgery of my own suggestion – one that I am proud to say Dr. Tseng agreed would do well to calm the tissue. He technically did a similar surgery for me in 2012. Despite medication and attempts to bring back sight in my right eye, the pain of it all was excruciating. Constantly inflamed, the scarring on my eyelids from 2008’s bout of Stevens-Johnson scratched mercilessly against my eye. It was far worse for the right one than the left.

Tseng believed the scratching may well be what caused the inflammation to ruin his remarkable surgery that renewed sight in my right eye for a few months. It had gone well at first! But as has been the case with the left eye, the scar tissue pressed forth – and in the right eye conquered all. So he used cheek tissue from my mouth to resurface the inner eyelid of my right eye, stopping the friction and easing the pain. And ever since my right eye has been blind, but calm.

Tomorrow, he will repeat the surgery on my left eyelid. It is my belief that the scar tissue continues to grow in an effort to protect my eyes from the constant scratching of the scarred eyelid. I hope that removing this friction will mean that the scar tissue no longer has a need to grow. Essentially, I’m negotiating with the terrorists of my body – not unlike the Remicade infusions which calm my RA.

And so, my friends, I go again. Once more into the breach. Once more up the rocky surface, with my fingers strong and my feet steady, hoping to make it past this next incline. Let’s hope for the best!

Try, Try Again

Do you ever wake up and just think, “Not today”?

For those of us with chronic illnesses (or even difficult habits), finding a way out can seem like an impossible task. After years of trying, the trying itself can become a monstrous chore. I know I have certainly had moments where giving up looked like the best viable option. Except, I would remember, giving up means getting worse.

There’s an anxiety that undergirds every new treatment. What if it doesn’t work? How much money am I wasting? How much time am I wasting? How much time do I have left, anyway?

Today I’m going into the eye doctor to be fitted for scleral lenses. Essentially, they’re large, hard lenses with a reservoir over the cornea to keep fluid on the eye. The hope is that this will ease inflammation and keep my eyes from growing scar tissue in an effort to protect the cornea. Sounds fantastic! Frankly, I’ve been hoping to get these for a few years now, but the expense wasn’t an option until just now.

Yet there’s still that voice in the back of my head – the one that reaches down and twists my stomach into knots. What if it doesn’t work? the voice asks. What if this was all for nothing, and you go blind anyway?

It’s a ridiculous notion, really. I’m in no danger of going blind anytime soon. We have several other options before that even becomes a worry. And yet, it remains my worry.

When my anxiety is high like this, I often turn to friends to vent. A simple text message at midnight to my sister will calm me, even if she doesn’t have the chance to respond until morning. For me, it’s about getting the words out of my head and sharing them with someone who cares. Other times, I might find it helpful to talk to a friend who makes me laugh or to watch something funny. I’m proud to say I own every episode of Monty Python’s Flying Circus, and it never fails to take the edge off.

My last resource, as a left-brained “Virgo”, is to plan. I plan what I would do if I did lose my sight or my ability to move freely again. I am instantly grateful for my vivid imagination and my dreams, for regardless of my physical condition, those have remained untouched. I have always loved writing and storytelling, and that has been my solace.

When I was first rebuilding my life in 2008-09, I happened upon a film that changed my life. The Diving Bell and the Butterfly is based on the memoir of a man who has a stroke and loses everything but his ability to blink his left eye. Through months of calculated blinks, he shared a story that gave me strength in that first year.

I actually haven’t thought about his story for a long time until now. Perhaps, if the appointment this afternoon does not go well, I will come home and read his book again. I can find hope in the powerful story and gratitude for my ability to read. Then tomorrow, I can research something new to try.

Putting the Pieces Together

prednisoneWe don’t talk enough about the added effects of chronic health problems. We’ll talk about what medications help. We might mention their physical side effects. But how often do we talk about how these things affect our daily lives? It’s almost as if being alive is enough. But in some ways it really isn’t.

Being alive and living are not mutually inclusive. Doctors and even society can sometimes fail to see the difference. Even worse, they can misunderstand how certain treatments that help us be more comfortable in one way might affect our ability to function well in another way. For example, a person on chemotherapy might be able to move more easily, but they potentially do so at the cost of constantly feeling sick. Different patients need different care, something that our entire healthcare system – insurance, legislators, and even doctors – seems to have forgotten.

I was reminded today about the importance of finding the right care, and especially of finding the right doctors. I was also reminded of how hard it can be sometimes to see the bigger picture of health when we’re focused on the daily minutiae. It can be difficult to piece together the real problem when we don’t think about our bodies as a whole puzzle.

Walking into my rheumatologist‘s office this morning, I went through the list in my head of things I needed to tell Anna, his PA. Headaches. Stiff hips in yoga class. Some trouble sleeping. Nothing much seemed out of the ordinary as far as my arthritis went. I followed the nurse back to a patient room and answered the usual questions. No new symptoms. No illnesses since I was last in. No changes in my medication.

Wait, I remembered as she listed the prescriptions on file. I’m still on prednisone from my surgery in May. But the moment was lost. She’d already moved on to the next question. That’s okay, I told myself. It’s not that big a deal, and I’ll be tapering off from it next week.

The nurse left the room, and I quietly scrolled through my Twitter feed as I waited. Once Anna stepped in, we jumped quickly through the niceties as she asked about school and how my eye was doing since the surgery.

I’ve recently been lucky with doctors. I hear complaints all the time from friends about poor bedside manner and the awkward moments of patient-physician interaction. The two physicians I see most, though, are some of my favorite people. And their staff are also fantastic. The first thing my rheumatologist ever said to me was, “Girl, you’ve been through some crazy shit.” I felt comfortable there. And after three years, talking with Anna was easy. Her probing questions about my physical and emotional health felt more like a concerned friend than a discerning doctor. I spouted off the list I’d made in the waiting room. But that’s the thing about good doctors: they know what to ask and when to listen.

“Is there anything else?” She tilted her head toward me, waiting.

I hesitated. My other issues seemed unrelated, and probably just caused by stress. But I decided to tell her anyway.

In the past, I’ve had problems with obsessive-compulsive disorder. I have been treated at various points in my life, and I’ve learned to manage it on my own. Most of the time I have no trouble with it at all. But over the past month I had been noticing OCD symptoms. Anxiety, obsessive thoughts over simple conversations, negative listless thoughts throughout the day, trouble shutting down my brain to go to sleep at night. I figured it was related to stress from overworking myself at school.

But as I spoke, I started to pick up the pieces I’d laid before her and put them together. It wasn’t just that my mind whirred as I tried to sleep. There was also a listless energy that made lying still uncomfortable to the point of being almost unbearable at times.

“Prednisone,” I told her. “I’ve been on prednisone since the surgery. I didn’t think about it until just now. Those are all the same symptoms I had the last time I was on it.”

She nodded and explained those those were all symptoms she’d heard before. Even the anxious thoughts. It was funny to hear her say that, considering my previous doctors had told me trouble sleeping was the only side effect that could be connected to the medication. three years ago, I’d spent over a year begging my doctors to let me stop using prednisone. They couldn’t believe a corticosteroid would have such a strong emotional reaction in a young woman. And even if it did, they argued, the benefits outweighed the costs. I had quite disagreed.

Her words brought a smile to my face. It was like a tiny cloud lifted from around my head. For a month I’d been having headaches and feeling downright crummy. But it had a reason now – one that didn’t involve me having to reassess my lifestyle or think about adding yet another prescription to my list. She told me that a few weeks to a month after stopping the prednisone I should feel normal again.

So often we get lost among the piles of puzzle pieces that we fail to see how they fit together. Writing down your symptoms or saying them out loud to another person – even when they seem unrelated – may be exactly what’s needed to figure out what’s wrong. Or what’s missing. As I’ve said several times in this blog, I am a strong advocate for keeping a journal to catalog both your physical and emotional experiences and of trying on several doctors until you find the one that best fits your needs.

Know your self. Trust your body. Advocate for your best life.

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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