I love this time, earlier in the morning. Before the day really begins you can sip your coffee, read the paper and imagine that you have the day off and nothing at all to do. You have a load of laundry in already. Your blood pressure relaxes, the dogs cuddle up, and you can look out the window and see that the birds are nesting (even if it is still too cool to have it open and hear them sing). You look forward to a longer-than-usual morning walk with the dogs to enjoy the mild morning.
And then, without warning, your brain wakes up and the lists start creeping in.
There is no food in the house, so you need to make a list and run to Aldi.
And there is no more toilet paper, laundry detergent, hand soap: another list for Walmart.
The coffee is almost out: Tom's.
The car had an emergency repair yesterday: Stop at your bank and get money from savings to cover that.
Speaking of banks: Time to close Mom's account, so take the death certificate with you to HER bank.
Oh, and the downstairs toilet seat is broken: Stop at Home Depot.
Hey, don't forget to mow the lawn: Oh, nevermind, Babygirl learned how to do that chore!
I love my life, but it would be easier if working for a living didn't eat up so much of my free time. And I really don't have Sunday afternoon for any of this because we are going to Philly for Monday appointments. Ah, well. I can rest after I'm dead as they say.
DeeDee
Follow a mom and a child with nephronophthisis through the kidney failure and transplantation process.
Saturday, April 30, 2016
Thursday, April 28, 2016
Enjoying Time.....
In a year where the losses multiply and the family just keeps shrinking, finding a way to peace truly matters. Recognizing moments of humor and grace and enjoying them to the very fullest makes enduring grief so much less horrible. Our ability to walk mindfully in our world: To see the spring, to hear the wind, to feel the air; these are the gifts we are given daily, if we will receive them.
Letting ourselves belly-laugh about the absurdities of daily life is infinitely healing:
Dinner conversation:
Babygirl, answering her phone: "I have to go help Curlygirl bring in her groceries. She says she has condoms and stuff and needs help." W.T.....
Curlygirl, yelling through the phone: "It's KLONDIKE BARS!"
Yeah, I can see the confusion....
So this week I've concentrated on all of that: Being present in the moment.
DeeDee
Letting ourselves belly-laugh about the absurdities of daily life is infinitely healing:
Dinner conversation:
Babygirl, answering her phone: "I have to go help Curlygirl bring in her groceries. She says she has condoms and stuff and needs help." W.T.....
Curlygirl, yelling through the phone: "It's KLONDIKE BARS!"
Yeah, I can see the confusion....
So this week I've concentrated on all of that: Being present in the moment.
DeeDee
Friday, April 22, 2016
Another Loss Coming........
About a month ago I noticed that Maybelle, always a big drooler, had some blood mixed in with the drool. I assumed at first that she had cut herself on something she had picked up on one of our walks. (She's surprisingly sneaky. I once looked down and realized she had an ENTIRE dead squirrel in her mouth. I was pretty chill about it, I must admit: "Oh, good girl! Look what you found! Now please drop it..." <Shudder>)
After a week it hadn't stopped and she was refusing to eat her usual chewy treats, so we went to visit Dr Kathy. Maybelle is a big dog, and she has a disproportionately big head, so getting any kind of good view is a challenge, but there was no obvious problem, so she told me to buy a bag of Greenies and give her one a day for a month and let her know if that didn't clear it all up.
By the end of another three weeks she couldn't chew the Greenies, and the bleeding was noticeably worse after meals. I began making her softer food and scheduled another appointment. Meanwhile Hubby and I managed to pry her mouth open and I got a really good look.
It wasn't pretty. Something big and black and raised had taken over the back third of her tongue. This was not visible a month ago when she yawned.
By Monday, we got her to the vet to discover she'd lost nearly five pounds in less than a month. We managed to get her mouth open for Dr Kathy. In her opinion, it's a malignant melanoma, and she could see that it has spread up into her cheek as well.
"What do you want me to do?" she asked. "I love this dog," I whispered.
She scheduled us for surgery yesterday to get a biopsy to confirm, and to debulk the tumor to make it easier for Maybelle to swallow. The surgery was cancelled because the vet was ill, and I had a chance to speak with her today, under slightly less emotional circumstances. She is as sure as she can be that this thing is malignant. She is equally sure that debulking the tumor will buy us time, but not much time. The surgery will be painful to Maybelle, and probably not too helpful.
Hubby and I talked it over. Right now Maybelle is enjoying her special soft meals. Right now she is still up for walking two miles twice a day and being friendly with every dog she meets. Right now, she is feeling okay.
So. We basically have doggy hospice here. And when she isn't having any fun anymore, we'll make a final trip to the vet. Given how quickly she's gotten sick, I wouldn't be surprised if we are back there within the next two weeks.
We brought her home a year ago today.
DeeDee
After a week it hadn't stopped and she was refusing to eat her usual chewy treats, so we went to visit Dr Kathy. Maybelle is a big dog, and she has a disproportionately big head, so getting any kind of good view is a challenge, but there was no obvious problem, so she told me to buy a bag of Greenies and give her one a day for a month and let her know if that didn't clear it all up.
By the end of another three weeks she couldn't chew the Greenies, and the bleeding was noticeably worse after meals. I began making her softer food and scheduled another appointment. Meanwhile Hubby and I managed to pry her mouth open and I got a really good look.
It wasn't pretty. Something big and black and raised had taken over the back third of her tongue. This was not visible a month ago when she yawned.
By Monday, we got her to the vet to discover she'd lost nearly five pounds in less than a month. We managed to get her mouth open for Dr Kathy. In her opinion, it's a malignant melanoma, and she could see that it has spread up into her cheek as well.
"What do you want me to do?" she asked. "I love this dog," I whispered.
She scheduled us for surgery yesterday to get a biopsy to confirm, and to debulk the tumor to make it easier for Maybelle to swallow. The surgery was cancelled because the vet was ill, and I had a chance to speak with her today, under slightly less emotional circumstances. She is as sure as she can be that this thing is malignant. She is equally sure that debulking the tumor will buy us time, but not much time. The surgery will be painful to Maybelle, and probably not too helpful.
Hubby and I talked it over. Right now Maybelle is enjoying her special soft meals. Right now she is still up for walking two miles twice a day and being friendly with every dog she meets. Right now, she is feeling okay.
So. We basically have doggy hospice here. And when she isn't having any fun anymore, we'll make a final trip to the vet. Given how quickly she's gotten sick, I wouldn't be surprised if we are back there within the next two weeks.
We brought her home a year ago today.
DeeDee
Sunday, April 17, 2016
Year-to-Year Comparisons.....
I realized as I was doing the financial analysis that it was in a bit of a vacuum. Each time I do it, it feels like the numbers are big, but it's hard to tell how big, exactly.
Before Babygirl got sick I never paid attention to how much we spent on medical care, so I don't have the numbers on what it was costing us in the years before. Despite the fact that our family was much larger, my gut instinct is that unless we had a dental crisis, the overall costs were substantially lower for several reasons:
1) Hubby and I were healthier. We had fewer medications ourselves, and fewer doctor visits, and therefore fewer co-payments.
2) Our insurance was better. We had lower co-payments for doctor visits and medications, and I don't recall that we had much of a deductible.
3) Some of the kids had Medicaid as secondary insurance, so they had no medical costs at all to speak of.
4) My income was a LOT higher because I was able to work more hours at a better pay rate, so a surprise medical bill of a couple hundred dollars just didn't have any emotional impact.
That being said, Babygirl was diagnosed with kidney failure in 2011. We started seeing the financial enormity of the situation as the bills for her first surgery and her dialysis began rolling in at the end of that year, but most of the 2011 bills didn't actually get paid until 2012, which is when I started keeping track for tax purposes. I myself had become ill been starting at the end of 2010, was out of work completely for the first quarter of 2011, and part time for the next quarter of 2011, so we were already bucks-down by the beginning of 2012 because of THAT. Each year since, my income has continued to decline and the base pretax cost of health insurance (not calculated or included in the numbers below!) has risen.
So, with that background information, here is a tabulation:
Year Medical Miles Total Medical Monthly Medical Deductible
2012 14,701 $19,157 $1,596 Yes
2013 3,586 $12,216 $1,018 No
2014 2,545 $5,500 $458 No
2015 2,261 $8,305 $692 No
In 2012 we were quite literally saved from financial disaster by the love and generosity of our church family and many other friends who pitched in and gave us well over $6000 in contributions large and small.
You can guess from the mileage that we made fewer trip to see doctors with Babygirl (one less round trip to judge by the total) last year. And yet we paid a LOT more. Some of the bills from both 2014 AND 2015 are still in arbitration and I am not paying on those bills yet.
The 2016 news is not encouraging. Our insurance's annual 'out of pocket' cost (the new name for 'deductible' I guess) is $4400 for the family. That isn't so bad, except that that total applies to "Level 1" providers. It turns out that CHOP is a "Level 2" provider, and our 'out of pocket' costs for Level 2 providers is $8800/year. Thankfully, this is not in addition to the $4400: $8800 is the maximum. This, of course, does NOT include medication and doctor visit co-payments. It appears that they won't hit us for more than 10% of a hospital charge at once. Babygirl's blood work at CHOP in February was about $11,000 total and we have to pay $1,100 of it, but we had to pay the full $1000 for her Botox injection procedure and the $485 for the nephrologist consultation. The co-payment for the Botox itself was $300, so the total for one visit was nearly $3000, only about 2/3 of which actually applies to the 'out of pocket' deal. Add in Hubby's back surgery and, well, I'm writing a lot of checks.
We can save some money by having Babygirl's blood work done at our Level 1 hospital ($550 instead of $1100) instead of at CHOP, so that is the plan going forward since she will need that same blood work done three more times this year at least.
We've gotten used to this. It is our new 'normal.' Money that used to go for luxuries, vacations, savings, gifts, contributions....it's medical. We will retire here at home instead of somewhere warmer. And we are still among the very, very lucky ones. I have not once had to choose between any medical cost and any true necessity.
DeeDee
Before Babygirl got sick I never paid attention to how much we spent on medical care, so I don't have the numbers on what it was costing us in the years before. Despite the fact that our family was much larger, my gut instinct is that unless we had a dental crisis, the overall costs were substantially lower for several reasons:
1) Hubby and I were healthier. We had fewer medications ourselves, and fewer doctor visits, and therefore fewer co-payments.
2) Our insurance was better. We had lower co-payments for doctor visits and medications, and I don't recall that we had much of a deductible.
3) Some of the kids had Medicaid as secondary insurance, so they had no medical costs at all to speak of.
4) My income was a LOT higher because I was able to work more hours at a better pay rate, so a surprise medical bill of a couple hundred dollars just didn't have any emotional impact.
That being said, Babygirl was diagnosed with kidney failure in 2011. We started seeing the financial enormity of the situation as the bills for her first surgery and her dialysis began rolling in at the end of that year, but most of the 2011 bills didn't actually get paid until 2012, which is when I started keeping track for tax purposes. I myself had become ill been starting at the end of 2010, was out of work completely for the first quarter of 2011, and part time for the next quarter of 2011, so we were already bucks-down by the beginning of 2012 because of THAT. Each year since, my income has continued to decline and the base pretax cost of health insurance (not calculated or included in the numbers below!) has risen.
So, with that background information, here is a tabulation:
Year Medical Miles Total Medical Monthly Medical Deductible
2012 14,701 $19,157 $1,596 Yes
2013 3,586 $12,216 $1,018 No
2014 2,545 $5,500 $458 No
2015 2,261 $8,305 $692 No
In 2012 we were quite literally saved from financial disaster by the love and generosity of our church family and many other friends who pitched in and gave us well over $6000 in contributions large and small.
You can guess from the mileage that we made fewer trip to see doctors with Babygirl (one less round trip to judge by the total) last year. And yet we paid a LOT more. Some of the bills from both 2014 AND 2015 are still in arbitration and I am not paying on those bills yet.
The 2016 news is not encouraging. Our insurance's annual 'out of pocket' cost (the new name for 'deductible' I guess) is $4400 for the family. That isn't so bad, except that that total applies to "Level 1" providers. It turns out that CHOP is a "Level 2" provider, and our 'out of pocket' costs for Level 2 providers is $8800/year. Thankfully, this is not in addition to the $4400: $8800 is the maximum. This, of course, does NOT include medication and doctor visit co-payments. It appears that they won't hit us for more than 10% of a hospital charge at once. Babygirl's blood work at CHOP in February was about $11,000 total and we have to pay $1,100 of it, but we had to pay the full $1000 for her Botox injection procedure and the $485 for the nephrologist consultation. The co-payment for the Botox itself was $300, so the total for one visit was nearly $3000, only about 2/3 of which actually applies to the 'out of pocket' deal. Add in Hubby's back surgery and, well, I'm writing a lot of checks.
We can save some money by having Babygirl's blood work done at our Level 1 hospital ($550 instead of $1100) instead of at CHOP, so that is the plan going forward since she will need that same blood work done three more times this year at least.
We've gotten used to this. It is our new 'normal.' Money that used to go for luxuries, vacations, savings, gifts, contributions....it's medical. We will retire here at home instead of somewhere warmer. And we are still among the very, very lucky ones. I have not once had to choose between any medical cost and any true necessity.
DeeDee
Saturday, April 16, 2016
Money Time....
The 2015 annual financial report is finally in. Well, to be truthful, it's been if for a while. It's the giver of the report who's been a little 'out.'
We were fairly typically charitable, had the usual expenses for utilities and whatever.
The house was expensive: Redoing a kitchen, adding a deck and upgrading the final bathroom came at a price. No surprises there, although when I ran the final numbers I was impressed by how well we managed our budget overall.
But it's the medical stuff that is the true subject of the blog, so here it is:
Babygirl only qualified for Medicare for the first two months of the year, so her premiums were $314.
CHOP bills appear to be pretty cheap, only $876 for the year. This is enormously deceptive as we are still disputing nearly our $3000 portion of over $20,000 in bills from hospitalizations in March and April. Once that is settled, anything we pay will show up in the 2016 medical payments.
Prescription co-payments for the three of us came to $3874, averaging $323/month just for medications. I didn't break down how much of this is just Babygirl. Keeping that separated is just far to difficult. Keeping my Mom's medications out of it was challenging enough.
Other doctor and dental bills came to $2496.
Medical mileage was only 2,261 miles, worth $565 toward the deduction.
Tolls were $137 and parking another $40.
The grand total? $8305. This does not include our insurance premiums, which come out of my paycheck pre-tax.
$692 per month.
We did not qualify for the medical deductible. Out tax preparer said, "I don't know why you keep trying to do that - you'll never qualify!" She has a short memory. We got the deduction on our 2012 taxes for Babygirl (and before her time, in 2001 for Curlygirl).
I suspect we'll make it tomorrow.
We were fairly typically charitable, had the usual expenses for utilities and whatever.
The house was expensive: Redoing a kitchen, adding a deck and upgrading the final bathroom came at a price. No surprises there, although when I ran the final numbers I was impressed by how well we managed our budget overall.
But it's the medical stuff that is the true subject of the blog, so here it is:
Babygirl only qualified for Medicare for the first two months of the year, so her premiums were $314.
CHOP bills appear to be pretty cheap, only $876 for the year. This is enormously deceptive as we are still disputing nearly our $3000 portion of over $20,000 in bills from hospitalizations in March and April. Once that is settled, anything we pay will show up in the 2016 medical payments.
Prescription co-payments for the three of us came to $3874, averaging $323/month just for medications. I didn't break down how much of this is just Babygirl. Keeping that separated is just far to difficult. Keeping my Mom's medications out of it was challenging enough.
Other doctor and dental bills came to $2496.
Medical mileage was only 2,261 miles, worth $565 toward the deduction.
Tolls were $137 and parking another $40.
The grand total? $8305. This does not include our insurance premiums, which come out of my paycheck pre-tax.
$692 per month.
We did not qualify for the medical deductible. Out tax preparer said, "I don't know why you keep trying to do that - you'll never qualify!" She has a short memory. We got the deduction on our 2012 taxes for Babygirl (and before her time, in 2001 for Curlygirl).
I suspect we'll make it tomorrow.
Tuesday, April 12, 2016
I Can See It.....
Every person has it.
There is a picture, painted in intensely unforgettable blazing detail on the inside of the eyelids. This picture can appear at any time, an unannounced blessing (or curse!), triggered by some small sound, sight, smell or emotion....
This morning I was walking Maybelle with the rain taking turns with the snowfall. We were nearing home when we passed beneath the branches of a big pine, low enough to brush the top of my head. The scent of cold air, snow and pine, and....
It was 1986. A very kind church group that I had attended VERY intermittently as a medical student had asked, "What can we do to help the medical students?" "Understand that we have NOTHING to give you. We are have no money, no time, no energy; and much of the time, we have no hope. Love us anyway." And they did. So I found myself with a group of caring young adults (not one of whom I can picture or remember the name of, to my utter shame!) on a ski slope in New Jersey (who knew! Ski Jersey!) with a free pass.
The day was perfect for skiing: Not too cold, perfectly sunny, endless blue sky, fresh powder. But for some reason, every time I got moving, I got nauseous. Some ugly combination of lack of sleep, poor nutrition and generalized deconditioning, no doubt - but it really slowed me down - and I'm a poor skier on the best of days (I am living proof that you can do something you enjoy for 30 years and still suck at it. Kind of like golf for most people, I imagine).
At one point, I gave up a little. I fell down in quiet place a little off the beaten path halfway down the hill ("Mountain" seems too big a word for a Jersey ski slope) and lay down on my back in the snow for a while to let my stomach settle.
I don't know how long I was there, but it was long enough to burn one of those pictures into my heart and soul. Surrounded by the caring of strangers who had brought me to this place of peace: Above me, intense blue sky, dark green hemlock branches heavy with tiny brown pine cones layered in fresh snow. I had nothing but time. Nowhere to go, and no hurry to get there. I stayed until the chill came through my clothes, and probably then a while, and to the best of my memory had no more difficulty for the rest of the day.
It was March 16, 1989, one of the longest days of my life. I'd already labored through all of March 15th, and was well on my way to exhausted. C-section was being discussed. Citygirl was being stubborn about making her way out. My Mom was my labor coach, since Citygirl's dad was out of the country, and she had stepped out to rest.
A very good friend from medical school happened to be working at the hospital where I was laboring. She turned up unexpectedly, just when I needed someone. "Picture your happy place!" she told me. "Breathe, and be in that place."
And there it was: Intense blue sky, pine cones, snow, and dark green all against the inside of my eyes. Surrounded by the caring of strangers: Peace.
Sometimes we forget that we have walked through hard times to places of peace already, and that those places are painted on our hearts and souls forever.
Take a moment. See it.
DeeDee
There is a picture, painted in intensely unforgettable blazing detail on the inside of the eyelids. This picture can appear at any time, an unannounced blessing (or curse!), triggered by some small sound, sight, smell or emotion....
This morning I was walking Maybelle with the rain taking turns with the snowfall. We were nearing home when we passed beneath the branches of a big pine, low enough to brush the top of my head. The scent of cold air, snow and pine, and....
It was 1986. A very kind church group that I had attended VERY intermittently as a medical student had asked, "What can we do to help the medical students?" "Understand that we have NOTHING to give you. We are have no money, no time, no energy; and much of the time, we have no hope. Love us anyway." And they did. So I found myself with a group of caring young adults (not one of whom I can picture or remember the name of, to my utter shame!) on a ski slope in New Jersey (who knew! Ski Jersey!) with a free pass.
The day was perfect for skiing: Not too cold, perfectly sunny, endless blue sky, fresh powder. But for some reason, every time I got moving, I got nauseous. Some ugly combination of lack of sleep, poor nutrition and generalized deconditioning, no doubt - but it really slowed me down - and I'm a poor skier on the best of days (I am living proof that you can do something you enjoy for 30 years and still suck at it. Kind of like golf for most people, I imagine).
At one point, I gave up a little. I fell down in quiet place a little off the beaten path halfway down the hill ("Mountain" seems too big a word for a Jersey ski slope) and lay down on my back in the snow for a while to let my stomach settle.
I don't know how long I was there, but it was long enough to burn one of those pictures into my heart and soul. Surrounded by the caring of strangers who had brought me to this place of peace: Above me, intense blue sky, dark green hemlock branches heavy with tiny brown pine cones layered in fresh snow. I had nothing but time. Nowhere to go, and no hurry to get there. I stayed until the chill came through my clothes, and probably then a while, and to the best of my memory had no more difficulty for the rest of the day.
It was March 16, 1989, one of the longest days of my life. I'd already labored through all of March 15th, and was well on my way to exhausted. C-section was being discussed. Citygirl was being stubborn about making her way out. My Mom was my labor coach, since Citygirl's dad was out of the country, and she had stepped out to rest.
A very good friend from medical school happened to be working at the hospital where I was laboring. She turned up unexpectedly, just when I needed someone. "Picture your happy place!" she told me. "Breathe, and be in that place."
And there it was: Intense blue sky, pine cones, snow, and dark green all against the inside of my eyes. Surrounded by the caring of strangers: Peace.
Sometimes we forget that we have walked through hard times to places of peace already, and that those places are painted on our hearts and souls forever.
Take a moment. See it.
DeeDee
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