Not them

It was a wonderful Saturday with my mentor, Rita, as we sat down for another quiet yet passionate discussion about the blessings we receive or the issues we face.  Rita is special to me as she is the mother of a friend I grew up with at school since first grade, and she was my seventh grade science teacher.  We had not seen each other in years, and we were purposefully matched together in a mentoring program.  God had a hand in the match up as we have strikingly similar personalities, struggles, and challenges.  Rita has gone through many relationship and health obstacles and has fought through everything with grace and beauty.  She has much insight on suffering and living fully despite it, noticing God’s blessings each step of the way.

Rita

And so on this particular day, I mentioned to her how I’ve been in heightened realization of my physical weaknesses lately. I told her how I’ve felt opposition from a couple of individuals as they sometimes judge me independent of my pain and fatigue, my daily struggle to live as normal of a life as possible for a patient with fibromyalgia, chronic pain, and a past of 17 years of liver disease ending with a liver transplant and two subsequent surgeries. I bemoaned how I deeply wish they could see my point of view, how desperately hard I want them to realize what I deal with each day so they could tread more cautiously and deliberately.  Of course, I meant it figuratively as in wishing they could just imagine what kind of physical and emotional pain I deal with and how my various thresholds can be so challenged at times.

Pausing to choose her words and then in her gentlest voice, she said this to me.

At times, we so greatly wish for people to see where we walk, yet at the same time, we try harder to hide it from them and pray in the depths of our hearts that they will never truly know what we experience.

As frustrating as it is, I am realizing it’s a good thing these people cannot relate to me because to be able to fully do so, they would have had to not only journey beside me through the years as they have done so diligently, but rather physically suffer through exactly what I have over the years.

My mind stopped immediately at this realization.  I whispered intently, “I wouldn’t wish this on my worst enemy.”

“Yes,” she continued. “There are times I cannot even tell my daughter exactly what I’m going through. It would kill her to know.”

Oh how true. For example, I have been protecting my these loved ones, shielding them from the worst, ever since I was in elementary school. They don’t know this, and I don’t even want to tell them now. To hide things like this from people so close almost sounds like a punishable wrongdoing. Yet we continue on in order to protect our loved ones, and we hold our breath hoping and praying they will never go through what we have, no not possibly that. Not this. Not anyone, but especially not them.

And so I proceed, journey on, more tolerant of their judgments, tempers, and inability to understand as I strive to daily thank the Lord that they just can’t comprehend what I’ve endured.

It’s not easy; I will assure you of that.  But when you love people, it’s really the only option.

May we take pleasure in our sufferings as they draw us nearer to our Lord and Him to us. He has willingly been through anything we could ever face in life just so He can truly, 100% understand what it feels like and in the meantime, guide us triumphantly to the other side.

Here I am Lord, send me

After this long night, it will be the time for my now annual checkup to make sure my body is doing a good enough job housing my donor liver and that nothing has turned hostile.

Today is the day I get to remember what’s actually possible and how grateful I am that it hasn’t occurred. …yet…

Every 6 months, I need to get a CT scan and labs done to ensure my body is still cancer-free. We look at organs, tumor markers, you name it – just looking for anything we can find to be wrong.

No matter how much faith I have, how many people I have rooting for me, no matter how much strength I can muster to get through each day, every 6 months I am left in a place I’d rather not revisit.  After all, it wasn’t but a little over 2 years ago when on this visit, I found out a tumor plagued my liver and I’d be instantly put on the transplant list.  What a difference an afternoon makes.  Oh, how ignorance is truly bliss.

The what’s and when’s replay in my mind even when I shoot them down. The statistics of recurring tumors and cancer and even kidney failure as a result of my medications… So many complications wouldn’t be a surprise. I’ve given up on sleep tonight.  I usually handle this better – much better – but lately, I’m just sick of being the patient.

Yet I know even if the worst did happen, I’d get through it just like I got through the past 20 years of sick and surgery and struggle. I’d get through it with my God and the wonderful people He has put into my life.

Aren’t we promised we have nothing to fear? Then why am I curled up in fear pleading with God to knock me out or let the Ativan kick in

This is uncensored real life, everyone. Sometimes there’s just no point hiding behind the wall.  This is me, and when you, God forbid, get to a similar point in your life, you’ll understand.

Please pray for me today for…
1) the stamina to get through a grocery list of tests and appointments
2) kindness when it’s the hardest
3) God’s will be done
4) I maintain an open, accepting spirit. “Here I am, Lord, send me.”

 Kelly Clarkson: Up to the Mountian

Oh, this is what it feels like…

I love you all and pray this away from each and every one of you. ❤  Please pray I get through this, one day at a time.

Life, Interrupted: Medical Bills, Insurance and Uncertainty

I like to write my own pieces on this site, but sometimes I read things that resonate much too deeply to ignore.  Things that I want to shout from the rooftops and say, This is real life.  This is my life.  Why didn’t I think to write that first?

Suleika Jaouad writes a column for the New York Times called “Life, Interrupted,” about being a young twenty-something with cancer.  Sounds familiar, right?  Her article today struck a chord deep inside.  I hope you’ll read it and understand exactly what my family and I go through playing the patient-vs-insurance game every single day.  I hope you’ll pray for health care reform in this country and that it helps instead of hurts and doesn’t end up leaving we chronic illness patients just more sick and tired.

Here’s our story.

Like a lot of other young people, I never thought about health insurance until I got sick. I was 22, and my adult life was just beginning. But less than a year after walking across the stage at my college graduation, I received an unexpected diagnosis — acute myeloid leukemia — and with it came a flurry of consultations, tests and appointments. From early on, my doctors told me I would need chemotherapy and a bone marrow transplant.

But before the shock of the news could settle in — before I could consider where and how I would be treated — I did what most Americans must do when beset with a medical crisis: I called my insurance provider.

Before I made that first phone call, I confess I didn’t know exactly what the word “premium” meant. And “co-pay” sounded to me like what happens when friends split the bill at dinner. Certainly, the term “lifetime limit” had no meaning to me yet. The last time I could remember getting sick had been a two-day bout of food poisoning during my junior semester abroad in Egypt. Now, I was facing cancer — and I was beginning to get worried about coverage from an insurance plan I knew virtually nothing about.

If you have a chronic illness in America, there’s a good chance you also hold a degree in Health Insurance 101, whether you want to or not. The first thing I learned was how lucky I was to have health insurance at all. (An estimated 49 million Americans, and nearly one-third of Americans 18 to 24 years old, are uninsured.) I was on my parents’ insurance, a plan provided through my father’s employer. It’s a comprehensive plan that will cover me until age 26 — two years from now.

I’ve been fortunate to be treated by excellent doctors at world-class hospitals. In the last year alone, my insurance has covered over a million dollars in medical expenses, including a bone marrow transplant and 10 hospitalizations amounting to a combined five months of inpatient care. It all sounds straightforward when I explain it like that. But even if you have insurance, the cost of health care — in dollars as well as in time and stress — is incredibly high.

As health care was debated around the country leading up to the Supreme Court ruling on the Affordable Care Act in June, my bills kept coming in. Every time I see a doctor, get a CT scan, receive chemotherapy or pick up a prescription, insurance covers only part of the transaction — and there’s always a bill on top of it. For a cancer patient like me who visits the hospital on a weekly basis (and that’s when things are going well), every few days I owe another payment. Keeping track of how much I owe, and for what procedure, and why, can make my head spin. Just learning the ins and outs of my plan’s coverage takes sustained, persistent attention and energy, things that sick people have in short supply.

And no matter how closely I keep track of the bills, there are always surprises and unexpected charges. During a six-week hospitalization for intensive chemotherapy, teams of doctors trickled in and out of my hospital room every few hours: my primary oncologists, the palliative care unit, gastroenterologists, X-ray technicians, infectious disease specialists and on and on. Most of the time I was too tired, too nauseated or too looped on pain medicine to remember who was who or what they were doing in my room. But my insurance company kept track. Even though my hospitalization was covered, many of the doctors who visited me were not part of my health plan, which meant that for every time they set foot in my room I would receive a steep out-of-pocket bill. After all, what was I going to do: tell the doctor prescribing my anti-nausea medication to skip my room because he happened to be out of network?

Another cost of health insurance is time. Time is money, as the saying goes, but when it comes to cancer and health insurance, to save money takes up a whole lot of time. My mother graciously took on the task of disputing claims, keeping track of bills, requesting approval for a procedure or a drug, and spending countless hours on the phone with my provider. While it may be a labor of love for my mother, in practice, working out insurance questions is just a lot of labor. Between the long hours spent taking care of me and dealing with our insurance, my health care became my mother’s full-time job.

So far, the out-of-pocket costs associated with my cancer care — co-payments, out-of-network charges, the costs of moving to a new city for treatment, fertility treatments not covered by insurance — have reached tens of thousands of dollars. The financial burden of cancer has not yet meant that my parents will need to get second jobs, or that we will have to sell our house — though I know of fellow cancer patients with and without insurance who have had to consider such options. But my mother has had to take the last year off work, a financial and professional sacrifice that’s due in part to the time required to manage my health insurance. What do others do who don’t have full-time help from a caregiver? My mother would do anything for me, but I wish she would be able to spend less time with my bills and more time with me.

In two years, I’ll graduate from my parents’ insurance. What will I do about insurance then? Perhaps I’ll gain coverage through an employer — though holding a job seems like a tall task if I’m still in treatment. Isn’t it a contradiction that insurance is often tied to employment, but that the sick people who need it most are the ones who have the hardest time staying employed? If the Affordable Care Act remains in place, at least I won’t be denied coverage because of pre-existing conditions. That’s a huge victory, but what will the cost of that coverage be, and will I be able to afford it?

When I’m lying in bed at night, I often worry about how cancer may affect my future: my career, my relationships, my dreams. Sick people don’t plan on getting sick. We shouldn’t have the added worry that someday insurance coverage may not be there. Or that a medical crisis could become a financial one too.

It’s good to know I’m not the only one.  And special thanks to my parents who take their powers of attorney jobs seriously and know how to argue the sense out of bill collectors and insurance companies. 😉

Fear of flying / Refinement

Today, I’m sitting in my hospital bed thinking and wondering, dreaming and hoping.  I’ve come up with an idea, a proposition… Bear with me as I get there.

I suppose it’s like the fear of flying.

See, airports aren’t scary, but for some people they facilitate fear just because of their proximity to take offs, landings, and turbulence.

I’m not scared of nighttime, but it facilitates fear because I know bedtime is soon approaching.  It means that soon the people will go away and the quiet will set in.  It means I’ll soon be alone to fend for myself.  Plus, it’s all too clear to me that I don’t sleep well at night, and I have memories of some very traumatic nighttime attacks.

In the same manner, I can say I am not afraid of hospitals, IVs, tests, or doctors.  Even surgery, really.   They just facilitate my deepest fear that I know I’m in over my head with illnesses science can’t even control. Illnesses that prevent me from achieving my dreams, make each day a struggle, and put limits on my life in all sorts of ways. Illnesses that play with my mind, making me worry about where my insurance will come from once I leave my parents’ and what kind of guy would ever want to marry this kind of a disaster. Illnesses that produce hours of phone calls and sorting through bills, dealing with insurance, and filling out forms. Illnesses that easily fill a pillbox full of medications that have taken over my body. Illnesses that self-adjust differently each and every day, illnesses that threaten my ability to make plans.  And ultimately, illnesses that could one day kill me, taking me from the people and the life I so greatly love.  That’s the only thing I truly fear.

But for now, I think maybe my illnesses are like the 6th grade. You have to go – you may not want to but have no choice.  Reluctantly, you bring home new knowledge every day.  You can’t help it.  Fortunately, it makes you a better person as you learn about the world and gain social skills. 

Likewise, I don’t have a choice whether or not to be sick, but I can be grateful knowing at least it’s making me a better person. This lifetime has given me so much love, increased my patience, and given me an empathy most people can never obtain. It’s given me opportunities and experiences that are important to my life and career studying to be a nurse. And most precious to me, it has given me a choice to put my life in the Refiner’s fire as somehow He refines and uses this damaged life for His glory. 

And finally I say, if all of this has been for even one person to know Him, if all of this has been to keep one person afloat, then each and every painful part of it has been worth it.  All 19 years of it.

I can’t get the thought of “Refiner’s fire” out of my mind.  Malachi says,

For He will be like a refiner’s fire. He will sit as a refiner and purifier of silver; he will purify and refine them. 

John Piper states,

He is a refiner’s fire, and that makes all the difference. A refiner’s fire does not destroy indiscriminately like a forest fire. A refiner’s fire does not consume completely like the fire of an incinerator. A refiner’s fire refines. It purifies. It melts down the bar of silver or gold, separates out the impurities that ruin its value, burns them up, and leaves the silver and gold intact. He is like a refiner’s fire.  But it does say, he is like a REFINER’S fire. And therefore this is not merely a word of warning, but a tremendous word of hope. The furnace of affliction in the family of God is always for refinement, never for destruction.

May the crazy miracle of just getting through my days be to the glory of Him who holds my future.  Praise God for the hope of refinement, of our ability to choose to be bettered through the pain and turmoil of this life.