Friday, September 30, 2016

Chickenpox (part 1, the background)

I've shied away from writing about this, because I get feedback from certain quarters that I tend to come across as whiny when I broach it.  However, humble and common though it may be, the experience of chickenpox squashed me and then caused me to learn and grow-- in ways that continue to this day.

No, it wasn't death, or cancer, or war or a terrible automobile accident.  Many people have experienced much worse things than my bout with the chickenpox.  Yet, the experiences that affect us are significant, in their own way, because of the changes they precipitate.  Depending on circumstances, a seven-year-old could be more deeply wounded by having his friend abandon him on a school playground than by losing his uncle to death.  The universal gravity of a situation, or the lack thereof, does not define its effect on an individual.

To avoid abruptly delving into a description of this event that seems pointless and plaintive, I will preface the story with a list of things I learned through it.  This goes against my instincts as a writer; I don't like to tell the ending first.  Still, I can understand that it is important for you to realize that there is a happy ending, that I did not get stuck in the sloughs of despair forever and all eternity.

(1)  I learned that Jesus is enough, and that He wants me to know that He is enough, and sometimes He needs to take away a lot of things that I hold dear in order to prove to me that He is enough.

(2)  I learned that Jesus can hold me together when I am losing my sanity.  Miraculously.

(3)  I learned that what I think I need is not necessarily what I really need, and I must trust Jesus to make the judgment calls concerning my needs.

(4)  I learned that life goes in seasons, and some seasons are rough--now and then we have a really harsh winter, or a paralyzingly dry and famine-ridden summer (I am speaking metaphorically)--but seasons come and go.  No season lasts forever.  I learned that if I hang on through a difficult season, it will eventually end, and a new season will begin.  This is something I totally failed to grasp before the chickenpox, but it brought me great hope for the future when I realized this truth.  After I figured it out, I thought, "Why didn't anybody tell me this?"  And then I thought, "Who can I help by passing this on?"

That is why I'm taking a stab at this memoir today, because I believe that there are flashes of hope and sparks of victory buried in the tale, stuff that might help someone else who happens to read it.

Here we go:

It actually started in the late winter of early 1992.  David was a fussy baby, and Shannon was a curious, energetic toddler.  I was overwhelmed.  I'd hit that point after pregnancy where my joints lost their pre-delivery looseness and started to spasm into the old back and neck problems that had plagued me since our car accident in 1988.  It's difficult to care for two very young children when blinding pain hits every time you lean down to pick one up.  Shawn was traveling a lot, family support was as distant and elusive as ever, and the dark, gray Syracuse winter dragged on with no sign of spring.

Then the nausea hit.  After it failed to abate over the course of time, I took a pregnancy test and yes.  Another pregnancy.  I tearfully considered my situation--my overwhelmedness, my utter exhaustion, my isolation--and I wept.  I simply had no idea how I was going to handle it, how I could possibly take care of the little lives that depended on me when I felt like I was, myself, dying.

The pregnancy was difficult.  It's just hard to be pregnant and nauseated while trying to care for a one-year-old and a two-year-old, with no family support and no breaks, ever.  It's particularly hard when your husband is a frequent business traveler.  The Lord heard a lot of complaining from me in those days, and I say this to my shame, but it is true.  Here are two good thoughts:  The Lord had grace for me, even while I despaired and watched the waves that crashed over the sides of my sinking boat instead of turning my face in trust to Jesus--the Lord had grace for me anyway.  Also, the pregnancy hormones made my joints loosen up, so the back pain was assuaged; at least the pain in my neck, if not the pain in my lower back.

The delivery was rough.  Laura was posterior with a facial presentation.  Afterwards, my midwife said, "That would have been a C-section if it had been anyone but tough old you."  I thought she was buttering me up, flattering me.  I did not think I was tough.  Granted, I almost bled to death, and yet I survived, so that demonstrates a certain toughness, I suppose.  I remember a geyser of black blood spurting up from between my legs on the delivery bed, and the midwife jamming her arm into me up to her elbow while screaming, "Methergine!  Somebody bring me methergine!"  Insanely, someone had swaddled Laura and tucked her into my arm at my side.  I was aware of a fear of dropping her but I couldn't move, couldn't speak.  There was the jamming pressure of a syringe of methergine being slammed into my thigh--I was so far beyond pain, nothing hurt anymore--and I thought, maybe they will listen to me now as I tried to speak, to tell them someone had to take my baby, keep my baby safe, don't let my baby fall.  Someone heard me and turned to Shawn who was huddled on a chair in the corner of the room with his head between his legs, unable to lend a hand.  I understood.  I thought, I need to sit down and put my head between my legs, too.  And then I realized that I was already lying flat on my back.  At that point I grayed out.

Later, I made a few scenes.  I was given a room to share with another new mom who had contracted an infection which kept her in the hospital for a few days.  Her mother was with her most of the time, but when her mother went home, around 11 p.m., she kept her TV on.  Around midnight, she still had it on.  I asked if she was planning to turn it off at some point.  "I will turn it down," she said.  But I could still hear it, and the screen flashed light into my eyes.  I'd been awake for over 40 hours at that point.  Frustrated, desperate, I left my bed and dragged myself to the nurses' station, limping and bedraggled, bloody, wrapped in the sheet from my bed.  I asked for a different room, tears running down my face.  "I have a one-year-old and a two-year-old at home," I told the nurse sitting behind the desk.  "I need to sleep now,  because once I go home I will never get to sleep again."  That nurse sneered at me, but her supervisor hissed, "Put this woman at the top of the list for a private room."  I went back to my room and tried to sleep, but the TV was relentless.  I ripped the sheets from my bed and carried them to a nurses' lounge I'd passed on my way to the nurses' station, earlier.  There, in the empty lounge, I nested myself among my wrinkled sheets on a cool vinyl sofa and turned out the light.  I fell into a blessed sleep in the quiet darkness.  A few hours later, a light woke me, and there was a stern-faced nurse with my tiny new baby, who needed feeding.  Dull fear surged in my stomach as I prepared to be reprimanded.  However, she was kind, a kindness that moved me to more tears.  Isn't it odd, how kindness sometimes makes you cry, when cruelty would not?

At home, I continued to hemorrhage, and the hemorrhaging was generally worst on Tuesdays.  So much blood.  I didn't know you could lose so much blood and keep going.

At the same time, Laura had thrush.  Neither Shannon nor David ever contracted thrush.  It was a new thing.  It required treatment for Laura, and treatment for me.  For me, after every time I fed the baby, I had to wash my nipples with soap and water, and then spread them with a gritty, caustic, anti-fungal paste.  Then, right before the next time I fed her, I had to wash off the gritty paste, do the feeding, wash again after the feeding, then apply anti-fungal paste again.  In our little cape-cod house, the upstairs bathroom sink faucet was broken and only delivered cold water.  During the days I could use warm water in the downstairs bathroom, but during the nights I gutted it out with the cold water upstairs-- these were chilly October nights-- multiple cold water washings ending with the application of the caustic paste, which was in a foil tube.  One night, in the dark, after I washed the second time, I grabbed the tube and applied the ointment.  It went on smooth, soothing, comforting.  For an instant it felt marvelous, until I realized that I'd mistakenly grabbed the cortisone cream they'd given me in case of hemorrhoids. So I had to go back, wash in cold water yet again, and apply the caustic anti-fungal paste instead.

For Laura, there was a medication.  Nystatin.  The directions on the bottle from the pharmacy said, "Give one teaspoon twice daily."  It made poor baby Laura convulse, folding violently forward--and projectile vomit, splattering volumes of curdled breast-milk across the floor, like a full glass of milk, spilled.  Alarmed, I read the pamphlet that came in the box with the medicine, and it said not ever to swallow the medicine, only to swish it in one's mouth and spit it out.  Well, obviously a newborn can't swish and spit, so I called the doctor's office and asked if I should just put some of the medicine onto a piece of gauze and swipe it around in her mouth.  The nurse told me, and I quote, "If the directions say to give one teaspoon, then you give one teaspoon."  I gave one more teaspoon.  I watched my child convulsively projectile vomit one more time.  I threw the medicine away and found some gentian violet at the drug store, with which I proceeded to treat the thrush on my own.  My faith in doctors was eroding.

When I visited my own doctor regarding my profuse bleeding that was not stopping, he gave me some little red pills and apologized, "You will have to take these every four hours," he said, "even during the night.  I'm sorry."  I wanted to laugh, except that it wasn't funny, but really, it was no problem.  Night was not very different from day.  I was up.  Two to three times with Laura, two to three more times with David.  No harm in being up for a pill.  No extra harm, anyway.

"You have to stay off your feet," the medical people kept telling me.  "You have to rest, so you can stop bleeding."  But how do you rest when you have a brand new baby, and a one-year-old, and (now, a few weeks later) a barely-just-three-year-old, and no help?  "I'm not vacuuming," I told them.  "Somebody has to change the diapers and make lunch."

So.  All of this, and I felt that nobody had ever had such a difficult lot in life as I.  Then one Sunday after church, Shannon, who was wearing a cute little sweater dress outfit, began to writhe and complain. "I don't like all these 'squito bites!" she cried.  Thinking it was the knit fabric of her outfit making her itch, I slipped it off her, and there she stood, in her little bare skin, all covered with spotty red chicken pox.

--to be continued--

Wednesday, September 21, 2016

Never give up

"One day Jesus told his disciples a story 
to show that they should always pray 
and never give up."
 ~Luke 18:1 (NLT) 

Sometimes I feel like giving up.  That's the honest truth.

Praying is hard work.  Praying when you don't seem to receive the answers you're hoping for, that's exhausting.  Praying for things that are far away, things you can't see, things that are mysteries to you, things you have no way of monitoring (let alone controlling) -- it can be excruciating.

Sometimes I drop to my knees, feeling the stiff numbness of lupus spreading into my slightly swollen toes and ankles, and my heart hurts.  "I can't do this anymore, Lord Jesus," I say.  Tears sting my eyes.  I've forgotten my reading glasses somewhere, and I can't see to read my Bible or the selected verses I've printed out for my prayer time.  How can the prayers of a messed up, discouraged, disorganized person like me have any effect?

But Jesus tells me to persevere.  Jesus tells me to keep praying.  Jesus tells me not to give up.  Furthermore, Jesus tells me that it is not about me or the power of my prayers.  It is about Him and His infinite power, His perfect wisdom, His incontestable dominion, His unfailing love.

I can rest in Him because it all rests on Him.

“Come to me, all of you who are weary and carry heavy burdens, and I will give you rest," Jesus says.  

"Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls," Jesus says.

"My yoke is easy, and my burden is light,” Jesus promises.  His yoke is easy because it rests on Him, so I can rest in Him, next to Him, but in Him.

Jesus walks with us through our dark times.  "I will never leave you nor forsake you," He says.  Immanuel.  God with us.  He is here.  He is near.  He is constant.

Jesus sits by the side of His Father's throne and intercedes for us.  The Holy Spirit also intercedes for us, with groanings too deep for words, the Bible says.  If God is for us, who can stand against us?

And the miracle: our prayers rise to God and become like the fragrance of incense in His holy nostrils.  Our fearful, fretful begging and pleading is miraculously turned into a fragrant offering as He listens and attends to our needs, our broken hearts.  How can He be so unfathomably good? 

I take no pleasure in the death of the wicked, says the Lord.

I do not willingly bring affliction or grief to anyone, He explains.

He will not coerce anyone to follow Him (oh how I sometimes wish he would), but He finds no joy in watching the rebellious reap what they sow.

For God so loved the world, He gave His one and only Son that whoever would believe could have eternal life.  He gave His own Son, His own life, to purchase our deliverance.  This mission has already been completed.  It is finished, Jesus said, and it was.  It is.

He is not willing that any should perish, and so He waits, patiently, graciously, extending opportunity after opportunity, orchestrating circumstances, shining the light of His Spirit into the corners of this darkened world.  To all who will receive Him, to those who believe on His name, He gives the right to become sons of God.

His desire is that all men would come to a saving knowledge of the truth.  The Bible tells us this in 1 Timothy 2:3-4.  I remember that now, because the numbers go 1-2-3-4.  As simple and straightforward as counting, God yearns to save humanity from sin and destruction.

This is my hope.  He is the saving God, the God who has always planned and executed everything for the salvation of His people.  He saves, rescues, delivers, heals, restores.  This is His character, His nature.  He is kind and gentle, and He longs to take us into His arms, feed us real food, clothe us in clean linen and wipe away all our tears.

Because of who He is, because the steadfast love of the Lord never ceases and His mercies never come to an end, because of His unfailing love, His almighty power and His lovingkindness, I must not give up as long as there is life.

Even if death comes, there is still hope, because even at the last moment, a heart can turn, as the heart of the thief on the cross turned (Luke 23:40-43).  The owner of the vineyard (Matthew 20) paid the same rate to those who came at the last hour as he paid to the ones who had worked all the day long.  There is hope to the very end, no matter how bleak things appear.

I must always hope, always pray and never give up. 


Wednesday, September 7, 2016

Economics . . . and my healthcare plan

Today on Facebook, I saw something that said, "I think a man with a helmet defending our country should make more money than a man with a helmet defending a football."

Well yes, of course.


"Should" is a tricky sort of word.  There is the way things should be, and then there is the way things simply are.

Obviously we ought to have more respect and honor for a man who puts his life at risk to defend our country than for a man who plays a game.  But "should make more money" is a pipedream.

Football players make more money than soldiers for a reason: because people like to watch sports and are willing to pay money to do so.  Additionally, when sports are televised, advertisers are willing to pay lots of money for commercial slots to sell their products to the large audience tuning in for the game.  Football raises a great deal of revenue; therefore, football players make a lot of money.  National defense does not raise a lot of revenue; therefore, there is not a pile of money accumulating for the soldiers to split.  Whether or not this is "as it should be," is rather immaterial.  What are you going to do?  Force people to watch the news about military skirmishes around the world, and prevent them from watching football, in order to generate higher prices for ad space during the news, and then somehow send the extra revenue to the soldiers' families?  Even if that would work (and it would not), it would violate all kinds of freedoms and rights of the public.

There are no money trees.  The government does not generate money.  The government only takes money--through taxes--wastes a bunch of it, and then redistributes what is left.  All the money that exists is only around because someone worked to earn it somehow, originally through providing some sort of real goods.  Money can then be traded for services, or even stolen--or taken by the government in the form of taxes--but at the beginning, it has to be derived from some real resource.

This is why I think health insurance is unethical and should be phased out.

Health insurance is a business.  It exists to earn a profit.  In other words, the people who run health insurance companies run them so that they can make a profit off them.

Insurance is like a gamble, a lottery; except to win, you must get very unlucky.  In other kinds of insurance, we understand this.  We pay for car insurance hoping that we never have an accident.  Many, many people drive and have no accidents or only very minor ones.  They pay far more into their car insurance than what they ever get back out of it, but they have it so that in the event that they are very unfortunate and have a catastrophic accident, there is financial coverage for the damages.  Because there are relatively few catastrophic accidents, car insurance companies can sell their product at a profit and still keep enough in the coffers to pay out in a bad year of accidents.

The same holds true for homeowners' insurance.  Most of our homes do not burn down, but we pay into the system just in case.  For those whose homes do burn down, there is enough there to cover their damages, and the insurance companies still operate at a profit because of all the payees who did not have a tragedy.

Health insurance should, similarly, exist to cover catastrophies when an illness or injury would otherwise wipe out a family's finances.  It used to be more like this, and it used to be called, "Hospitalization."  But somehow, health insurance broke somewhere along the line.  Somehow, health insurance started paying for people's basic health care rather than traumatic health catastrophies.  And then, when that proved not to be viable, the rates skyrocketed out of the stratosphere. Think about it: how could health insurance possibly work?  Car insurance and homeowners' insurance work because not everybody suffers calamities in these areas; in fact, a relatively low percentage of people do.  That's why the insurance model works--lots of people pay in, so that there is coverage for the unlucky few.  But almost everybody gets sick at some point.  How can you possibly insure against that?

Health insurance companies, because they are companies, operate at a profit.  So, if they are taking money from you and paying out for your healthcare, in order to produce that profit, they are going to charge you more than what the healthcare costs in the first place.  It's not a good deal for the consumer.  That's how they make a profit.  They take in more than they pay out.  It's very simple. This is also simple and obvious: we would be better off without them, because we would rather not be forced to pay for our healthcare plus a surcharge so the health insurance company can make a profit, rather than paying for the healthcare alone.  This shows up in crystal-clear obviousness if you have ever been without dental benefits and have considered the financial efficacy of purchasing a dental insurance plan on your own, as opposed to paying out of pocket.  It is much less expensive to pay out of pocket.

Case in point:  we bought one of the original Obamacare Marketplace Health Plans.  It cost us $1000 per month in premiums, and there was a $12,000 family deductible that had to be paid out of pocket before any coverage even began.  This means that between your monthly premiums and your deductible, you are guaranteed to spend a minimum of $24,000 in a year before you receive any benefits.  If you don't spend out your entire deductible, you might spend less than $24,000, but the insurance company will not pay out any benefits at all in that case.  Except, a free yearly physical was supposed to be included in that, but the physical would be qualified as "not covered" if you actually discussed any new or pre-existing health issues with your provider.  Basically, you could have a free blood pressure check and cholesterol screening, along with a professional weighing and height measurement and perhaps a bit of nutrition and exercise counseling.  Period.  Seriously.  This is not a good deal.  It is not a cost effective way to structure health care.  Even if I paid out of pocket for my yearly physical along with the rest of my medical expenses, is it doubtful that even I--with the expenses incurred by lupus--would exceed $24,000 in doctor bills in a given year (in doctor bills alone, if I didn't have insurance premiums to pay).  This is what I am saying: insurance companies take in more than they pay out, so they can be profitable.

If someone were to contract cancer, that would be no longer be the case, and by getting unlucky in life, he would get lucky in the health insurance lottery, but nobody really wants that.  The crazy thing is (I noticed this when shopping the exchange for health insurance plans): Plans don't always cover cancer or major injuries anymore.  You often have to add special riders to get that type of coverage.  I do not know how many consumers are reading the fine print to realize this.

Recently, my insurance company denied a standard blood lab run with a general physical.  Over the course of trying to figure out what was going on, I was told many different stories:  It is covered, but coded incorrectly.  It is coded as preventative but needs to be coded as diagnostic.  It is coded as diagnostic, but needs to be coded as preventative.  I should be covered.  Oh, nevermind.  It's not covered.

I submitted a formal written appeal and received back a letter with the word DENIED, all in caps, just like that. Somebody enjoyed writing DENIED, I am quite certain.  In the fine print, the letter stated that under the Affordable Care Act, "the frequency and eligibility of services is subject to change."  Well now.  As you might imagine, this statement did not increase my feelings of happiness, security, affection for President Obama or respect for insurance companies.

At the end of the day, this is what we need:

1.  We need to phase out insurance and go back to a fair fee-for-service medical system.

2.  We need billing reform.  Doctors are currently forced to inflate their bills to protect themselves from insurance companies adjusting allowable charges down to where the doctors could not remain solvent.  This should be easy to fix if we phase out the insurance altogether, but doctors and labs will need to reduce their rates.

3.  We need tort reform.  People should not be able to sue doctors the way they do.  Incompetent doctors should be barred from practicing, but good doctors should be protected from frivolous lawsuits.  Life is messy and people get sick and die.  Doctors cannot prevent this from happening in every situation.  Indeed, every person who has ever been born either already has or will at some point die.  Doctors can't stop this.  Doctors are not God (and even God has His sights on the next life, not this one).  Doctors usually do the best they can; doctors usually honestly want to help people.  If they wanted to be rich, they would be insurance company executives, not doctors.  If we stop suing doctors for every uncontrollable negative outcome, they will be able to stop purchasing expensive insurance against lawsuits, and that will also allow them to reduce their rates.

4.  If we are concerned about access to healthcare for people in poverty, we should develop community clinics, free and open to the public, that would provide a basic level of healthcare to all citizens.  This would include physicals for children, services for injuries such as stitches and bone-setting, education on nutrition and hygiene, maternity care and delivery services, and medications for common illnesses and infections.  These clinics would be funded by the government and staffed by government employees, similarly to the way public schools function.  The buildings could even be annexed to public schools.  Each clinic would have one or two doctors for oversight, but they would be predominantly staffed by NPs, PAs and nurses.  They should be open 24/7 and take the burden of the uninsured off hospital emergency rooms.

5.  Health insurance--if it survived at all--would function more like other insurances: people who could afford it (or whose companies chose to offer it) would have health insurance in place to cover health emergencies and catastrophic illnesses.

6.  People with the money to do so would be able to purchase whatever health services they desired, outside of a health insurance system, and costs would be lower because health insurance would not be around giving doctors cause to increase fees.  In fact, doctors' fees would decrease, because in a more organic fee for service system, doctors would experience the need to compete for patients. Insurance companies would no longer dictate which doctor you could see!  Besides driving costs down, the competition would motivate doctors to provide the best services possible, weeding out incompetent doctors.

7.  We should encourage medical professionals themselves to design concierge service clinics, where patients could pay a monthly rate to receive whatever services they need over the course of a year.  In essence, instead of paying $1000-$1400/month to an insurance company for possibly no benefits, you would pay $1000-1400/month to a medical group that contracts to provide services for you as needed (no high deductible).  Let me tell you, you'd get a ton more for your money, and you wouldn't have to worry about pre-authorization or surprise claim denials.  Large companies could contract with these concierge clinics, or even design their own for their employees.  The clinics could contract with hospitals.  This is a fabulous healthcare option, but it is rendered impossible by President Obama's current healthcare laws, which were written by the very insurance industry that profits most from them (and from blocking creation of a system that would allow people to circumvent insurance).

8.  We should encourage and incentivise medical research to develop less expensive treatments for conditions like diabetes, so that they could be available to the poverty stricken.

9.  We should use a system of vouchers for healthcare, whereby everyone would receive vouchers to be used at government healthcare facilities.  Over the course of treatment, people would either receive more vouchers--as they complied with their treatment plan, or have vouchers revoked, if they refused to take responsibility for self-care.  People who lost all their vouchers due to non-compliance would then have a choice between giving up their free healthcare opportunities, or giving up their personal freedom and being institutionalized in a state-run infirmary where compliance would be enforced.  People who purchase private healthcare on their own would have freedom to chose and follow whatever treatment plans they wish.

10.  We should set up a special non-partisan task force of highly experienced doctors, medical researchers, medical ethics specialists, hospital administrators and economists to study what exactly could be reasonably covered by the government in public community health clinics.  We should shelter this group from lobbies and other outside influences. We should strive for compassion while being realistic about what medicine and the government can and cannot achieve.

The fact that we currently have laws that force citizens to purchase health insurance from companies run by the same people who wrote the laws, who are rich and getting richer, whose only purpose is to run a company that makes a big profit . . .

This is ludicrous.

This is unconstitutional.

This is not freedom.

This is an egregious abuse.

This must come to an end.

Economics are economics.  Money doesn't grow on trees.  The government can only do what it can do; it is not omnipotent.  People get sick and die sometimes, and this cannot always be slowed or prevented.  All babies are not born perfect.  We need to be both realistic and compassionate as we figure out how to live within the limits and constraints of life in a very imperfect world.

* * * * * * * * * * * * * * *

This would be a viable solution to the healthcare crisis we are experiencing.  The trickiest part is figuring out how to phase out the health insurance industry without throwing our economy into a crisis.  Nearly 500,000 people make their living working in the health insurance industry in the USA.