Friday, August 5, 2016

Lupus and BCBS -- a deathly combination

Right now I feel like God does not love me anymore because I just was nasty to the nurse at Christie clinic.  She called to tell me that Dr. B will not change the code on the General Health Panel blood test to diagnostic, because it was not diagnostic.

When I call them, I pray before I call, and try to remember who I am in Christ and be filled with the peace of the Holy Spirit, because I know that these conversations are dangerous battlegrounds for my soul.  But when they call me, I don't have time for all that preparation.  I just have to pick up the phone and hope.

I had appealed for the change because the last time I spoke with BCBS they said that the GHP is not routinely covered with physicals and is not deemed medically necessary as a preventative test, and can only be covered if it is diagnostic.  This is the opposite of what Andrea at BCBS told me in June--she told me it would be covered under my preventative care if it were coded correctly--but whatever.  They change their story every time I talk to them.

My rheumatologist (KS, NP) wanted the same panel run, and I was (ironically) trying to save money by only running it once and sharing the results between the two doctors.  Dr. B told me that it would be covered as part of my preventative care (in full) so I thought it would be advantageous to have that particular test run through her and shared with KS, rather than the other way around.  I filled out a bunch of paperwork to be sure that KS would get the results, but I am not sure whether she ever did, and she had not received them by the time of my appointment with her, and she was annoyed about that, and although she maintained her composure and was polite, it was an uncomfortable experience for me.

Yes.  Apparently this was not the advantageous way to go.  At all.

...Even though I was assessed an extra charge for the actual  physical as well, because during the appointment we talked about lupus and reflux, according to the insurance company, who was looking at the diagnosis line on the paperwork.

So I asked Dr. B (submitted an appeal) to change the code on the GHP to diagnostic and connect it to the lupus so I could at least get it covered at 80%.  Heck.  I'm already paying $127 for uttering the word lupus in her stinking office.  Dr. B says that changing the code would be unethical, reports her nurse.  Dr. B says we only discussed reflux and not lupus.

I finally lost it and, practically in tears, told the nurse, "Look, I don't know what is covered and what is not covered, or how anything is coded, or what the codes are.  Somebody told me it was coded as diagnostic and needed to be changed to preventative, and somebody else told me it was coded as preventative and needs to be changed to diagnostic, and meanwhile I never see anything.  I'm helpless to do anything for myself.  I'm flying blind.  All I see is a bill for $305.00 that I was told would be covered, but now am being told is not, except it would have been covered at 80% if I had just had my rheumatologist run the lab instead of you.  You know what?  I have lupus.  And you know what else?  Lupus is triggered by stress.  You know what gives me stress?  Going to the doctor gives me stress.  And getting bills gives me stress.  Having the coverage of those bills denied by insurance, that gives me tons of stress.  So I guess I will just stop going to the doctor, and maybe I'll just die.  And then I won't have any stress any more."

She was silent for a moment and then she said, "I can see why you would be upset.  I wish I could do something to help you."  But she didn't say it compassionately.  She said it in that flat way that says, "It would be nice if I could do something to help you but I can't."  Perhaps she was reading off a card topped with the heading, "What to say if the patient brings up death."

So I replied to her, very brightly, "Yes, well apparently you can't help me.  So.  You have a good day now, but I probably won't.  Good-bye."  And then I hung up, because I was sick of her legalistic unhelpfulness.

And now I feel guilty.

I just hate this.  Hate this.  I cannot tell you how much I hate this.

Tuesday, April 5, 2016

Medical bills

With lupus, they want to test your blood and urine every 3-4 months.

I've had microscopic blood in my urine for the last four tests or so now, maybe five or six, well over a year.  They call it microscopic hematuria.  They said I had to get it checked out.  I put it off for months, but finally moved to have the tests done because of significant pain in my lower back.  I had to have a cystoscopy and a kidney CT scan with an IV dye.

There is still blood in my urine.  The tests turned up no results.  With my deductible and after insurance "negotiated down" the rate for the cystoscopy, I owed something like $800 for that.

But the CT scan.  Oh the CT scan.  The insurance denied the CT scan.  So I have a bill for $7550.15 staring me in the face.  That would be $7550.15 that insurance refuses even to apply to my deductible.  Just a pure, straight $7550.15 out of my pocket.

They said, "This is not covered under the preventative care covered by your plan."  They said, "It was coded in with a code that indicates that it is preventative care." 

Seriously.  Who would ever, ever go to a urologist and have a kidney CT scan with dye for purely preventative reasons?  How?  When?  Ever?  Why does such a code even exist in the world?

So I called the insurance company.  They said, "They put it in under the code Z0000.  That is a preventative code.  They have to change it, but when they do, it should be covered."

So I called the doctor's office.  I told them what the insurance company said.  The receptionist told me, "We got pre auth for you as a courtesy.  This is not our responsibility.  If their code doesn't work, it is not our problem.  We put in a good code.  You are still responsible for the bill."  I tried to explain that she needed to find a different code.  She ratcheted up her voice a notch and said, "You are responsible for your bill!"

I tried emailing the doctor.  A nurse called me back.  She said, "No.  We submitted the claim with the diagnosis of microscopic hematuria.  They denied the claim because the test returned a negative result."

My heart is pounding in my chest.  I hope you can see some of my dilemmas here, because I don't want to dwell on this frustrating situation to the point of pointing out every ridiculous thing that is happening.

The nurse told me she would try to change a code and resubmit the claim.

I waited.

Today I got another bill.  Still looking at $7550.15.

I called the insurance company again.  The man told me that the code Z0000 is wrong.  I replied, "Yes.  I have been told that.  Can you please tell me what the correct code would be?"  He said, "No.  I cannot tell you how to process a claim.  It is against our policy to tell you how to process a claim."  Of course it is.  Of course.  He was not unkind.  He was not rude.  But he was supremely unhelpful.  I told him that the nurse had told me that the claim was refused because the test came back negative.  He said, "I'm afraid she is giving you bad information.  That is not correct."

I called the medical billing customer service.  The lady there was nice and told me, "Oh yes.  We've been having a lot of trouble with those Z codes.  The insurance companies don't like them.  I'll put a note on your bill."

I have faith.  There is a God in heaven and He loves me.  This will eventually be worked out.  Somebody, some day, will find and enter the correct code.  The insurance company will negotiate down the charge, and we will pay most of the negotiated bill, but we may reach the end of our deductible, so the last $432 or so might be covered at 80%, which is what our plan covers after deductible.  I believe that this will happen and that it will eventually be mostly okay.


I am not going to have any more tests.  I am just going to wait until my body is rotting and decomposing and then I will ask for palliative care, pain killers.

I will not have any more tests, because I sincerely believe that the stress of the tests and the exceedingly great stress of trying to deal with insurance and billing after the tests, is certain to shorten my life on its own.  One of the keys to dealing with lupus is to reduce stress.  I can reduce my stress a lot if I have less medical tests, and especially less medical bills.

If only I didn't have to go to the doctor to get my hydroxychloroquine prescription.  Because every time I go, they order more tests.  I could lie and say I feel fine.  I did that once, in the past, before the lupus was diagnosed.  I just went in and lied, and it worked great--a wonderful respite from testing!--until I got too sick to function.  You see, if you lie and say you feel fine, they won't give you your medicine.

I'll go back to the hospital when it's time for morphine.

Wednesday, February 10, 2016

Trucking on with lupus

Finally I had the cystoscopy and the kidney CT scan done.  It's a relief to have them over with.

I don't like the IV injection of dye that goes with the CT scan.  It's a gross sensation, and my kidneys hurt for a couple of days afterwards.  I'd not had that pain before, and wasn't expecting it.  I was afraid it might mean that there was something wrong, but it didn't.  Everything was fine.  I guess having some pain like that helps you be extra grateful for a report of good results, and assuages the irritation of having  to pay for a test that probably could have been skipped.

I hate cystoscopies.  But this one was fast, over so quickly, I almost wondered if the doctor could have seen what he needed to see.  I am not complaining, as long as I don't have to go back.  He said it looked good.  He said that the kidneys are a filter, and as we age, filters have some backwash, and microscopic blood in my urine is no big deal.  This is not quite as comforting to me as it probably ought to be, but it is what it is.

So the next thing to work on will be my eyes, which are troubling me.  I put this off because I needed to get through the urology stuff, and also because I think I might have a routine ophthalmology appointment coming up, which would enable me not to have to worry about whether it is authorized by insurance.

In the middle of this, I'm still trying to get this house sort of decorated, or at least undoing some of the decorating that was here and is not according to my style.

I need to call a contractor to discuss tiling some bathroom floors.

Our master bathroom has a very cheap vinyl plank flooring right now, that Shawn and I put in when we tore out the carpet, as a stop-gap until we could figure out what to do.  Confession: it isn't very pretty, but I like it.  It's comfortable.  I know how frigid tile is going to be, once it is installed.  I am totally conflicted about this.  Here we are in this pretty-nice house, with a totally campy bathroom floor, and because comfort always trumps aesthetics for me, I am at a total loss to make a decision.

I also have paint swatches all over the kitchen table.  The peachy beige in the main front hall is just not right.  Yet, I don't think I really care enough to change it.  I don't like it, but I don't really care.  It is so not important to me.  And yet, I think, if we have to sell this house, we will have to fix that color.  And then I think, if we are going to eventually need to invest in fixing it, it would be nice to fix it in time to enjoy it.  But then again, I don't care enough to make a decision and move forward.

And, of course, there is balancing medical bills with home improvement bills.  Medical bills always win, unless I can get out of the tests in the first place.

Sometimes I think I am going blind, and I wonder how I will feel about home decorating when I can't see anything at all.

It looks like we might get to go to the Redwood Forests this summer, sometime.  Shawn used to say he didn't want to take me because he feared that once I'd satisfied that heart's desire, I'd just up and die on him.  I'll try not to.

Monday, December 14, 2015

A bad day

Sometimes lupus gives you a bad day.

My bad day started sometime yesterday; I'm not sure when.  My ears started to hurt, and my glands swelled up.  I was trying to get some things done, but twenty minute tasks stretched into two hours or more.  I functioned patiently for a long time, just rolling with my mistakes without tensing up and getting angry, plugging along, doing things slowly, stupidly, in the wrong order, but plugging along.

Until it got to be 11 p.m.  At 11 p.m -- when I realized how late it was, and how little I had accomplished -- I fell apart.

Today should have been a good day.  I had fun things to do, friends to be with.

But I felt awful.  For one thing, I got hardly any sleep last night.  I fell into bed, exhausted, at 12:09, because that's just how long it takes me to get ready for bed when I don't realize it's late until 11 p.m.  I thought I would fall right to sleep, because of how tired I was, but I lay there struggling to turn my mind off until 1:44, at which point I got up to use the bathroom.  I got up two more times to use the bathroom, finally fell asleep, woke up what seemed like 15 minutes later, and realized it was daylight.  Sigh.  Fatigue settled in like a sort of noxious pain.  I felt awful.  And when I feel awful, I am cross.  Crabby.  Miserable.  I try to hold it in, but I feel it coming out.  A word.  A tone of voice.  A snap.  Then I feel ashamed and self-conscious and guilty.

It was a dark, rainy day.  A Syracuse sort of day.  We don't have that many days like this here in the midwest, but today our weather got me down, too.  Also, I always seem to feel worse when there are storm clouds in the sky and specks of water or snow in the air.

I soldiered through a bunch of Christmas shopping.  Drove home feeling the dreaded, "Ooooops.  Pushed too long and hard."  Tingling chills on my lower back suggest the onset of a low grade fever, never a good sign.

Shawn came home, and we ate (I'd already had to go ahead and eat some food before he got here, because of how weak I felt).  Then I looked through the mail and opened a medical bill for approximately $675.  And I wept.  It was $1114 before insurance "adjusted" it.  I should be thankful, right?  But I wasn't thankful.  I was distraught.

You know what I hate the most about lupus?  I hate the bills.  I'm always having to go to the doctor, and the doctor orders tests.  The doctor tells me I have to see more doctors, and have more tests.  Currently I am avoiding going to the urologist for a CT scan of my kidneys and a cystoscopy.  I am supposed to have these done because my regular lupus blood tests have shown blood in my urine (microscopic, invisible amounts) for nearly a year now, and it isn't going away.  Usually this doesn't bother me.  Usually I don't have pain.  I take cranberry tablets and drink a lot of fluids.  I don't want to go to the doctor for this.

I do not want to go to these appointments and have these tests.  There are only two possible outcomes from these tests, and neither is any good.

1.  We could find that I have a serious problem that needs expensive treatment.  Boooo.
2.  We could take the time, undergo the unpleasant procedures, and pay the thousands of dollars they charge for doing the procedures, and then find out that everything is fine and we could have just as well saved the time, money and unpleasantness.

I am going to try to wrap about five gifts, and then I am going to try to go to bed early.

I will not try to figure out what to do with this bill until tomorrow.

Thursday, October 8, 2015

Lupus losses

While I know there are people who suffer greatly with lupus, I am not at that point yet.

I suffer a little bit.  I ache, and I have very limited energy.  I can't do a lot of the things I wish I could do.  My eyes bother me, and I get headaches, sometimes even nausea when I try to read.  That's hard, because reading has always been one of my great joys in life.

Travel is difficult for me, and that's hard, because I live quite far from my loved ones.  It's always been hard to live far from family, but it seems even harder now, as I am still far from my parents and brother and sister, but now I am also far from my second family, my children who had come to be my precious family, my comfort and my joy.  Now they are distant, too.  And distance is formidable when you have lupus.  Even when you can suck it up and put yourself through the ordeal of travel, you are not yourself once you get there, and you can't enter into the moment as you wish you could.

Additionally, lupus is a very costly disease.  The expense is more overwhelming than the actual symptoms, most of the time.

Recently, my husband's company was acquired, and in the acquisition, we got different health insurance, and I can't find any confirmation anywhere that my rheumatologist is a participating provider with the new plan.  I've combed the computer data bases, and it looks like she is not.  I've called both her office and the insurance people numerous times, but the doctor's office insists that the insurance company is the one who needs to tell me whether the doctor participates with them, and the insurance company insists that it is the doctor who should know which plans she participates with.  It is all Blue Cross Blue Shield, but they have so many different plans that the doctors don't know which ones they are participating with, and apparently BCBS doesn't know itself.

So.  I have costly panels of lab tests run every 3-4 months, and costly specialist visits to follow up, and costly referrals to other specialists for more costly tests, but nothing makes me feel better.  Nothing fixes me.  At one appointment, the rheumatologist asked if I'd been having any new pains.  I'd been going through a time of waking up in the middle of the night from shooting, horrific pains in my big toes.  I told her about it.  She looked at me with big, woeful eyes, and--in all seriousness--told me, "If that continues to happen, you can take some ibuprofen."  I just sat there, stunned.  $240 for an office visit, and this "specialist" is going to tell me to take some ibuprofen for pain?

Not going to lie.  Lupus makes me depressed.  Between the symptoms and the cost of "treatment" (and I use the term treatment very lightly, because I don't think I am really being treated, only monitored), I can rarely travel to see my kids, and my kids are my joy in life.  So I feel that lupus is robbing me of joy.

Additionally, stress causes lupus to worsen.  This is scientific, not just in my head.  Lupus is an auto-immune disease.  That means that my immune system is impaired.  Rather than fighting off viruses and bacteria that cause disease, my immune system attacks my body and makes me hurt.  Heightened cortisol levels stimulate the immune system to act up and attack even more.  Stress causes heightened cortisol levels.  Therefore, stress is bad for lupus.  But I can't control stress.  Anguish over a wayward child, disappointment over not being able to see a distant child, fear of medical tests and medical bills, all these things come into my life and make my body hurt.  I can get very discouraged.

I take each day as it comes, because what else can you do?  Fighting it adds to the stress.  I can choose not to fight.  I can choose to take it to Jesus and cry a little, and then dry my tears and trust that He is with me now, and He has a better life in store for me in eternity.  I'm getting a new body!  Hallelujah!  I'll be able to run through fields of daisies for miles, breathing deep and moving my arms and legs.  I'll be able to leap and dance and sing and see beauty and bask in the presence of God with no more pain.  I have this to look forward to.

In the meantime, I pray a lot, as much as I can.  I try to eat well--even though food is often repugnant to me.  I eat as well as I can.  No gluten because it triggers inflammation.  Not too much sugar.  As much salad as I can stand.  I try to eat well.  I try to get exercise, gentle walks, every day.  I try to rest.

As long as I baby myself, I do pretty well.  It is an awful limitation, an embarrassment to be so weak.  I envy people who can entertain and go on trips and decorate their homes and dig in their gardens and handle all manner of projects.  I'm doing well if I can figure out how to get to the grocery store along with going to work 12 hours in a week.  I'm thankful when I fold the laundry or wash the dishes.  A tidy kitchen and clean sheets, that's a blessing.  "House beautiful" is another dream I've had to die to.

Dreams I've lost include a tight and loving extended family and a beautiful, full-of-laughter, organized, welcoming home.  That's really all I ever wanted, and I do have pieces of them, just not the picture I always dreamed of and longed for.  I figure Jesus wants me to die to this, and it is such a bitter pill to swallow. 

I know that I should be happy and content with Jesus alone.  Jesus should be all I need.  Jesus is more than enough.  Jesus died for me, gave His blood to pay the price for my sin.  Yet, I continue to sin by being discontented and longing for idols of my heart, resenting the things that keep me from them.

Why can't I be grateful for the great salvation that is mine in Christ Jesus?  What is wrong with me?

Friday, May 1, 2015

Happy May Day!

I'd like to get some seeds into the ground, but I am exhausted right now.  Guess what I did?  I got up and did a few morning routine things, showered, emptied the dishwasher, folded some clothes.  Then I went out for an early lunch with a friend.  After lunch, I drove to town and took my son to the grocery store, took him back to his place, and then came home and put my groceries away.  And then I walked the dog.

Now I am bushed.  Lupus makes me feel so stupid.  I mean seriously, who could be bushed from that?

I guess this is my complain-y blog.  I try to keep the whining off my other blog these days.

It is beautiful, warm sunshiney day, probably 75 degrees.  I want to be out enjoying it!  The colors outside my windows are vibrant.  I want to plant my flowers.  I want to relish the first of May!

My neck went out sometime earlier this week.  I'm not sure when or why.  A cold breeze?  Sleeping in a different position because Shawn is out of town?  Last night I plastered myself up with a host of Salonpas patches.  They are surprisingly helpful.  Today I took ibuprofen; that helps too.  But the key word is: helps.  There are things that help, but there doesn't seem to be anything that cures.

After the grocery store, my grocery bags spilled all over in the back of the van.  This made me irrationally angry, I suppose because I had to climb into the back of the van and crawl around, reaching for all the things that had rolled hither and yon, and when you have lupus and your neck is out, this is quite painful.  Pain makes me very edgy, and in this instance it made me mad.

I was mad because the back seats in the van were folded down and the two bucket seats were installed in the van, and I did not know why.  Folding down the back seats creates a wide, flat area in which things slide and roll profusely.  Usually we keep one of the bucket seats out of the van, so the dog crate has a spot to sit in.  And then we put the back seats up so there is a low space behind them, a couple of hole-like spaces, into which one can place grocery bags without fear that they will later ricochet around the interior of the vehicle.  This is how I like the van, and for whatever reason, this is not how the van was today, and being in pain and suffering the consequences of the different arrangement, I got mad.

Nobody configured the van this way in order to hurt me.  I can't remember what we did last weekend; it's quite possible that we needed to move something that required this configuration.  Just because I had a little pain, it doesn't mean that anybody is out to get me.  I know this is true, but sometimes it helps to codify it, to remind myself, because there is something visceral about pain that makes the subconscious human psyche feel persecuted.

Getting mad also makes you tired, drains your energy.  I have learned at least this much: I should avoid getting angry as much as possible, because being angry makes me tired, increases my pain, and generally wears me out right along with whatever it was that was wearing me out in the first place and inciting me to anger.  It's a wicked vicious cycle.  Historically, I have been very bad about identifying my pain and using strategies to cope with it.  Historically, I have denied my pain until I turned into an angry, screaming lunatic or a desperate, weeping fool.  This needs to change, and I am learning to change it.

So I am using this blog to vent a little, to analyze my feelings and to comfort myself.  I will calmly and rationally explain my situation with the van to my husband when he gets home from LA.  I will ask him if he would please help me get the configuration of the van back to the way it was.  He is a kind and reasonable man, and I have no cause to think that he will treat my request with disrespect, as long as I don't do something stupid, like blame and accuse him for something that is not his fault. 

It is over now, and it will be okay in the end.

Resting while writing has calmed me.  It was a profitable endeavor.

Perhaps I will even plant some seeds now.  I was also hoping to do some baking with rhubarb, but that might just have to wait, and that's okay, too.

I am going to have a happy May Day.  It is May first, and it is glorious.

Lupus can knock me around a little, but I am learning how to prevent it from getting the better of me.

Friday, February 20, 2015

Lupus and the flu vaccine

Lupus is a problem of the immune system.

Vaccines, sometimes also called immunizations, are formulated to stimulate the immune system to produce antibodies to fight a specific disease.

They discovered immunizations because back when everybody was dying of smallpox, the milk maids were not getting sick and dying along with the rest of the population.  The milk maids commonly caught cowpox from their cows, and somebody finally noticed that people who had gone through cowpox did not get smallpox.  When the body fought through cowpox (a relatively mild disease), something happened to its internal chemistry that made it able to fend off smallpox afterwards.

Extrapolating, scientists developed vaccines (immunizations) for many diseases.  Using very small amounts of toxins and introducing them to the bloodstream through shots, they could stimulate the body to build up defenses against dangerous viruses.

So you see: vaccines, which I think are actually a very good thing and a very good idea, generally, are a way of working on the body's immune system, stimulating it to go to work and build up defenses against diseases.

However, since lupus is a condition that stems from a broken and malfunctioning immune system, it is my theory that immunizations for people with lupus may be a bad idea.

In lupus, the immune system has gone wild.  Rather than attacking the things that are actually harmful to the body, the immune system of a person with lupus attacks various parts of the body itself.  You do not know what it is going to attack.  It may attack the joints, the blood, the heart, the kidneys, the eyes, the skin . . . the list goes on.  It is a rogue band of warriors, armed and dangerous and out to destroy whatever is unfortunate enough to cross their path.

In my experience, the best way to keep my lupus quiet is to avoid stimulating the immune system.  Therefore, I think it would make sense not to get immunizations, especially the flu shot, for fear of waking up the immune system and causing a lupus flare. 

Before I was diagnosed with lupus, I had the flu shot twice in my life.  Both times, I had a mild reaction following the shot (low fever and slight achiness).  Both of those years, I also contracted the flu.  I did not contract the flu immediately following the shot.  Although I do not remember exactly, I know I had the shot in the fall, probably October, and I know for certain that once I was sick with the flu over Valentine's Day, and I think the other time I had it in March.  So I am not saying that the flu shot gave me the flu, I am just saying that I got the flu both years when I got the flu shot.  The flu shot did not protect me from getting the flu.  Of course, they say that it only protects against a few varieties of the flu, and defend it by telling you that you were just unlucky enough to contract one of the strains that it doesn't guard against, however . . .

Outside of those two years when I got the flu shot and also contracted the flu, I have only had the flu one other time in my life.  Now that I am 49, statistically speaking I can say this:  I contracted the flu in 100% of the years when I was immunized for the flu, while I contracted the flu in 2.1% of the years when I was not immunized for the flu.  That's the math.

Since having the flu--or another virus--is a major trigger for lupus flares, it is my goal to have the flu absolutely as infrequently as possible.  For me, that means declining the flu shot.  I think that even the low-level reaction that I got after each flu shot would be likely to plunge me into a lupus flare at this point in my life.

As an alternative to the flu shot, I take 4000 IU of vitamin D3, daily.  Since I have been taking D3, my resistance to viruses has been little short of miraculous.  I contract respiratory viruses very infrequently, and when I do get them, I am able to fight them off in 2-3 days, even when they come on suddenly and with severe symptoms.

My key for stemming the tide of lupus is to tiptoe around my immune system and do everything I can to avoid waking it up.  "Let sleeping dogs lie," as the saying goes, or, since we're talking about lupus, "Let sleeping wolves lie."

I am not a medical professional of any kind.  I only write about my own experience, what seems to work for me, and what seems to make sense to me.  I do not have a doctor I can trust to take care of my lupus (my PCP is better than any rheumatologist I've found, but she won't prescribe hydroxychloroquine), but if you are blessed with a trustworthy doctor, be sure to speak with him/her before you make any changes to your routine.