TV news crew visits house, Eli refuses to wear pants

Panic strikes as I remember my make-up is in my gym bag at work.

There is knock on the door.

It is a TV reporter and cameraman.

My son is eating cereal in his diaper.

The TV reporter and cameraman enter.

Eli sees them, throws himself on ground and refuses to wear pants.

So began our little dispatch on the petition I made to stoke public discussion on the high price of charity-funded drugs made to help my pants-less fellow with cystic fibrosis.

My lady reporter friend Rachel Calderon reads my blog (Hi Raaach!)

She’s always up on social media looking for interesting stuff. Last year, due to my blathering on about trying to figure out personal finance in the face of chronic disease, I served as her every-mom in a different report. Still trying to figure that one out, personal finance plus chronic disease.

Turns out it’s hard for people to go on camera and admit life’s a struggle, man, because Rachel had a real hard time finding a subject.

But, life’s a struggle, man.

That struggle is why I started my petition. That’s why Rachel came to my door again.

I found make-up in a corner somewhere. Eli put on overalls-with great difficulty. 

My protest is a pre-emptive strike on the struggles of future Eli.

Do I know that my insurance company will approve of future lifesaving drugs when current medications are being priced in the hundreds of thousands per year?

No.

Do I know if my son will be subjected to co-pays in the hundreds or even thousands of dollars and need multiple medications priced as such to stay alive?

No.

Do I know if he will have to choose between food and drugs, as the chronically ill do, or between bankruptcy or death?

No.

Those are the stories I’m hearing as thousands and thousands of people sign my petition and leave messages of support.

Stories like that. Bankruptcy or death.

It’s like the game we used to play when we were children:

“Would you rather – be eaten alive by a bear or drown in a sea of tapioca pudding?”

WTF? I was an odd child.

The stories – bankruptcy or death?- are the stuff of my nightmares for little Eli.

No, I can’t say how it’ll go for future Eli. But I can say that I don’t like the way things are going, with new drug combos from Vertex priced in the hundreds of thousands of dollars for one year’s worth of pills, those very drugs funded by millions in charity dollars funneled into science from CF patients, their friends and families.

Then there’s this story: A CF doc named Brian P. O’Sullivan with The Children’s Hospital at Dartmouth-Hitchcock in New Hampshire told me Orkambi – a drug priced at more that $200K/ year – is packaged in 28-pill packs, meaning patients have to buy 13, not 12, times per year.

There aren’t 13 months in the year.

So, what, are drug companies creating ghost months now?

An extra payment is a pretty big deal if you are an adult patient who pays a $500/month co-pay on a month’s supply of Orkambi, like one of Dr. O’Sullivan’s patients. BTW, that adult CF patient paying the $500 is one of a set of twins with the disease. The other twin Dr. O’Sullivan sees pays a reasonable $30/month!

I can say that I found out dying kids in poor and/or small countries aren’t getting cystic fibrosis drugs. In some places kids are still dying by 10 or 15, and I can say that that bothers me.

No one seems to care about dying sick kids from obscure countries we know only as vacation destinations or something we learned about in 7th grade geography.

I wrote a column about a 14-year-old Chilean schoolgirl with cystic fibrosis who begged on YouTube to die by euthanasia in February. Her father, who works in the lab of a chicken farm, relayed to me that he tried to move to the U.S. to help her in the mid-2000s but authorities told him “No.”

By the springtime Valentina Maureira strained to stay alive through quick, shallow pants.

“Help,” she said.“Help. Help.” Those were Valentina’s last words. She died May 14 of the same genetic illness my son carries.

Vertex began as a small biotech company. The company grew along with amazing discoveries that have helped extend the median age for people with CF from early childhood to 42 in the U.S.

In my petition, I highlighted windfall compensation packages Vertex executives have swung for themselves after brilliant minds working under them made a blockbuster drugs funded by patients and their families and friends. Kalydeco was approved in 2012, the same year Eli was born. It thins out the body’s mucus, literally correcting the genetic defect at the cellular level for a small number of patients with CF. Next came just-approved Orkambi, which stands to help those with a more common type of the disease, like my son, by bumping lung function by 3 percent. The price ranges for these charity-funded discoveries are $259,000 to $376,000 for a year of pills.

In 2014, CEO of Vertex Jeff Leiden took home nearly $46 million.

I can say I find that deplorable.

I can say that I hope the last words of the now dead schoolgirl ring in his ears:

“Help. Help. Help.”

I can say that they probably don’t.

Forty six million in a year? How’s about you dice that up and kick it on out to all the CFers for whom the discoveries have come too late, who are desperately campaigning for money for new lungs?

That’s another reason I did this. I’m just sick of it all.

I’m sick of the desperate pleas for help paying for overpriced medical treatments and procedures and drugs. To be clear, I’m not sick of the people making them, I’m sick to my that they have to campaign for cash to pay for what they deserve-life.

It boils down to greed on the backs of the sick and dying.

I know research and development is expensive. But show me the numbers that justify these prices. Show me the profit margin on a $900/day medication like Kalydeco.

Yeah, you can say “but kids in U.S. get the drugs!” via insurance companies, state aid or grants, or some combination – but do we know that this arrangement will last?

No.

Governments are strapped for cash. Tax payers are strapped for cash. The middle class is strapped for cash.

Our wages are stagnant and in cases like mine even going down as health premiums rise.

Why are premiums going up? Why are deductibles going up?

Maybe it’s because drug companies create drug prices that are works of fiction and nobody ever does anything about it.

It’s getting out of hand.

Why is the ratcheting up of drug prices boundless and ever-expanding like some dark, evil universe?

Why are we so willing to sit here and take it?

I’d love to be able to shut up and be all doe-eyed and agreeable, maybe pick up a pyramid scheme and make adorable cupcakes and pretend I’m all joyous and shit, like a regular “mom blogger.”

But I can’t. Just can’t.

My son’s body is already under attack by his disease, cystic fibrosis. But that’s not the only predator closing in on him. There is something else eyeing him from the shadows. A tiger is stalking him. That tiger is greed, and if we don’t do something now, it’s going to eat my son alive.

Thank you for your support. My petition has almost 9,000 signatures, and I’m blown away.

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Financial planning for parents with special needs children

On and off I’ve been hunting for resources that will help us to better prepare financially for Eli’s future.

I e-mailedf finance journalists (who ignored me) and searched online without any luck.

Looking back, though, it may have been more than a keyword problem.

I wasn’t using the search term “special needs” because I didn’t *actually* want to accept that Eli had any.

In the conversation where I officially learned Eli had CF, though my tears, I’d said that I didn’t want him to feel different. I didn’t want him to feel sick.

But he is different. And though he is fighting battles we can’t see, he still has to fight every day to keep his body healthy.

While keeping up with time-intensive care, managing medicines and doctor bills and, you know, everything else in life, it feels totally overwhelming to even contemplate what steps we might need to take or what help is already out there on the financial end.

Point is, reading random personal finance articles tonight I found a great organization that I plan to contact.

It is called the Special Needs Alliance. 

It’s just a start, but it’s better than what I had yesterday: nothin’.

Onward.

daily-life

When being bad is good: the tax refund trip that rescued us

It’s August 5, 2011.

I’m sitting in a cafe off of the highway south of San Francisco sipping coffee. The front page I hold — a free copy of the San Mateo County Examiner — carries news of yet another market crash.

My husband sits across from me and snaps a picture of me holding the newspaper so we remember the date. He is under-employed as he has been for last two years, try as he has to find a teaching job in Michigan, poster state for economic collapse, its rusting shells of manufacturing giants physical reminders of economic turmoil and despair and hardship.

Why were we there, in Michigan, and then, the California cafe?

There are three reasons.

First of all, my mom had become sick. Her diagnosis with terminal cancer prompted Mark to turn down a good job offer at a university in Chicago. Instead, I found lower-paying work in the southeast corner of the state where I grew up, Michigan. We moved so I could be with my mom.

Weeks after moving, we found out I was pregnant with our daughter. I treaded water, tired and trying not to drown, occasionally projectile vomiting on the way to an assignment. It was hard to make a living for two adults and one forthcoming person in small-town digital (read: no money in it) media. My daughter’s pending arrival became the best kind of diversion, a light in dark times. My mom came up with her name — Laila June. While pregnant, I waddled with my mom to chemo sessions and walked with her and her dimwitted-yet-loyal Chihuahua Isabelle in the park down the street. Later, after Laila was born, I consulted the wacky weed doc when my mom’s pain intensified to the point she could no longer move. Gayle passed on grass. The grass wasn’t going to do the trick. One of her last procedures killed the nerve endings around her spine so she could no longer feel the pain caused by the tumors that would not stop.

Here’s the second reason we sat at that cafe: In the spring of 2011, probably because of the austere existence brought on by the chain of events that led us to Michigan, we got a big tax refund.

We blew it all on a last-minute trip to see friends marry under the Redwoods in northern California’s Big Sur region.

Highway 1

That August, as I sat in the California cafe, my mom had been gone just 10 months.

As for the third reason we found ourselves sitting in a cafe off of the highway — I don’t think I understood it fully at the time. We needed to invest in each other. We needed to escape the drudgery and to reassure ourselves that we could be happy again, individually and together. As life-affirming as those last months with my mom were, the eventual gut-wrenching loss turned my world upside down.  My mom died when my daughter hit six months, and my own long and torturous grieving process began. And in my experience, no matter how lovely a little bundle of joy may be, an infant’s first year of life throws a relationship totally out of whack. That was true for Laila — a healthy little buddy and the queen of the the chill baby set — and it was true years later for Eli — a little guy who came with two emergency surgeries, a deadly diagnosis and an ironclad will to live. Add to the already toxic mix for a married couple Mark’s under-employment — he raised our daughter, worked as a substitute teacher and at a deli. He enrolled in a community college to re-train in a health field, acing his science courses, only to learn the wait list for his preferred new line of work stretched on for years.

I’m sure it raised eyebrows in our inner circle that a young family standing on such tenuous financial ground would stash a 1.5-year-old with relatives, blow a comforting tax refund and make it for the West Coast. If it was a bum move, we didn’t care. Even with life’s bright spots in Michigan — good times with pals and my daughter’s first everything — we were living with a type of misery that wasn’t worth explaining to anyone and that only we could understand.

If California was a mistake, it was the best we ever made. Even today, with a good four years of perspective under my belt, with my own ongoing July spending freeze and minimalist dreams and focus on frugal habits and my contemplation of the fact that stress is a trigger that tempts me to swipe plastic, even with all of that, — I’m so glad we did blow that cash.

We booked it. We stashed Laila. We left.

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We pulled off the highway in San Mateo County and got breakfast on our first day in California.

Later, I jumped off a boulder into a cold and clear mountain pool and it washed away my misery. We drank good beer under the Redwoods and it strained the stress from our souls. The winds off of the coast whipped my hair and stripped away my grief and sorrow.

We discovered we were not only still in love, but that we liked each other. We could laugh. Life could be good again. Our friends are the best, that never changed. The world is big, and interesting, and wonderful, and experiencing it together and especially with our friends remained then and remains now one of our greatest joys.

Was it financially smart to move from Chicago to Michigan, my new husband passing up a solid job offer in favor of a my meager salary and proximity to my dying mother?

No.

Then after she died, should we have rejuvenated our busted souls by taking walks in the park down the street rather than the Redwood forests?

Most likely.

Cash in the bank shouldn’t steer every decision. I don’t regret moves like these that salved hurting hearts- my mom’s, my own and Mark’s.

We were bad, and it was good. Was the trip a magic pill that solved all of our problems? No. But it sure helped.

Below, we drive down Lombard Street.

Have you ever taken a trip considered “a bad idea” given your financial circumstance at the time? What made you decide to go for it? Was it a mistake? Or, do you have no regrets? Why or why not? xo send me a note using the contact form at the bottom of this post or leave a comment below. xoxoxoxoxox

I like to write about cash money. I like to write at the intersection of money and emotion. Follow me top right via e-mail, on Twitter and Facebook as I figure it all out. In a world of Facebook braggarts and Insta perfection, I write about messing up.

xo


 

Eli, media mogul

you crazy moms
you crazy moms
My pal Rachel Calderon over at News9 featured Eli being adorable and cute, along with a story about stuff we’re doing to plan and save.

But srsly I look at the video and I just keep rewinding to him getting on his beloved truck.

Ooooh so cuuuuute.

For real though: Rachel worked up a 30-day financial challenge series for her station and asked us to participate! She reads my blog (Hi!). She was having a hard time sourcing a family finance story, probably because the only time people want to talk about money is when they’re showing it off! PAHA!

Not us! Oooh let me take you to Goodwill in the ’97 Ranger we bought with cash. Maybe after we get back we can have some Ramen! Yes? No? Doesn’t work?

Thank God Rachel knows what she’s doing, or who knows how this story would have turned out.

My family’s part in all of this was to do some number crunching, share the numbers with a financial planner, take to heart any criticism, listen to tips and implement them.

It was great to have an expert cast her expert eyes onto my budget and an expert journalist cast her eyes on our story. And it was easy, oh so easy — maybe too easy — for me to blather on about our goals on camera.

Rachel did a great job telling our story and included in it context and additional facts about financial challenges faced by families with chronic disease.

Here’s a link to the piece.

I’ll let you read and watch Eli being adorable surrounded by some facts about money.

In the mean time, we’ve begun rolling out new financial plans as we roll on into 2015.

We’ve implemented a few, but not all of them.

A few of our savings/spending goals are:

-Space out auto-deductions into savings account throughout month; save more to account for occasional purchases like clothes, electronics, gifts and auto repairs. Use cash for those occasional, yet expected, costs.
-Save more for fun dreams, ie, we want to take my kids to the ocean in ’15
-Invest in fun for ma and pa; it’s OK. It’s really OK.
-We’ve knocked out our December and Christmas budget; creativity in gift-giving shall commence now.

First of all making a budget, and second of all sticking to it, is a challenge.

2015: Bring it.

I try to write about our effort to save, survive and thrive each Monday in the category Money Madness. Cold, hard green. Bookmark it bay-bay.

What are your savings and investment goals leading into 2015? Leave a comment below or send a note!

xo

C-ya, slummy, and 5 other matters of madness and cash

Oh hey yah, it’s been a while since I wrote about cash.

Let’s see…During the month of September we were like a germ bag circus.

The month of October, we had an opportunity to move away from slummy the slumlord, owner of giant dread tree in backyard he refuses to cut down.

And why clean the house when you can just transfer your stuff into a new one?

We got so busy, the laundry pile so huge, and this move has been so overwhelming, and I ate so much pizza, I kinda felt like this guy:

bleeeeeh
bleeeeeh

Bleeeeeeeh!

It’s been just over a year since I spearheaded the family effort to not be financial dum dums any more.

I just re-read my original post in which I was like: chronic disease. Top American dream killa, frack you. Here it is. That’ll get ya caught up.

A year on, are things easier? No.

However, we are making better choices and slowly, slowly (possibly too slowly) our lives are changing.

Below is a list of ways my family has changed for the better and what I feel we can do to improve.

Good thing bad thing, the list:

1. No more-ish boredom shopping
I (vastly) stopped shopping ‘because I’m bored.’ I gravitate toward shiny, pretty things so that was good.If I want to look around in a tantalizing store out of boredom or need for escape I will leave my cash n debit in the car. Mark…just…never buys anything for himself, so no worries there.

But can you (yes, you, Juliana) do better?: I go to Goodwill in search of treasure for kicks, I won’t deny it. By “treasure,” I mean, I bought a giant porcelain rubber duck for the kids’ bathroom. Also, I am obsessed with globes and found a pretty sweet one from Haiti. Who doesn’t need a giant duck and a Haitian globe? Don’t judge me. Aw crumbs it’s all money down the drain.

2. A pat on the back for saving
Saving while attempting to afford childcare for Eli and Laila is flippin hard. Even as we cut a check every week, the numbers staring back up at us are just…stunning. Because of my son’s chronic illness (cystic fibrosis) I have refused to put him in daycare. We have a nanny I love but she’s pricey to the tune around 2K/ month. That’s one big ass pile of cash for we little people of little consequence and modest means. My dad Big Al recently chipped in, because as opposed to last year when we had part-time help, we now have full-time help due to the demands of our work schedules. I feel like the biggest of all big huge losers for admitting this.

But we can do better?
With my pop’s recent big-hearted move, I hope to squeeze more into a savings account. Other changes we made to afford our childcare tab include enrolling Laila in a public school, canceling cable (boo hoo first world problem), paying off Eli’s medical bills from two surgeries with a sense of urgency and sticking to a budget at the grocery store each week. We also took on extra work, which brings me to…

3. Extra work…yaaaaay…kind of, because who actually wants to work more? NO ONE.
A good thing about sharing what’s going on in life is that people step up. Around Christmas last year I started waiting tables to kick down Eli’s medical bills. So holding two jobs plus being a parent 24/7 felt, well, exhausting and stressful, which I wrote about. My excellent friend Lee (Hey Lee!) kicked me a good contact for freelance work and I quit job 2. I’ve only had the chance to write a few articles but it helped kick-start a savings initiative. Then my pal Erika offered my husband Mark, a teacher, a copy editing gig for a curriculum company he does at night. Why are we working like this? For one thing, we have not received meaningful raises in years, which has had an increasingly negative impact on us as our expenses continue to rise. I’ve not received a raise since I moved to Oklahoma three years ago in January. My husband’s raises (OKC Public School) are like a bad joke. HAHAHAHA except no one’s laughing.

But can we do better?
Right now, like, as I’m typing, in this moment in time, no. Because we like to sleep. Wait, then why are we still tired? Because we are trying. It is statistically more likely that opportunity will present itself and your life will improve when you try. So we’ll just keep trying.

4. Budgets
We’ve had them! Like, half the time!

Do better: Have a monthly budget. It really does work to keep one in line financially.

5. Housing
We moved to a new house.

Can we do better?
I don’t really know. We are renting. Maybe that’s stupid. But I believe in having enough cash for a big down payment at least and a stockpile for fixes and the unexpected, and we just don’t have that now. I think we are doing better, because we are living in a bigger, nicer, safter and more energy-efficient place and it’s just a little bit more per month. Plus OKC is one of the lowest cost-of-living metros in the country.

And I don’t have a slumlord any more.

Victory is mine.

I try to write about our effort to save, survive and thrive each Monday in the category Money Madness. Bookmark it bay-bay. Thanks for reading!

What kind of financial improvements are you trying to make in your lives? What have your successes or failures been and how long have you been givin’ it the ‘ol college try? Leave a comment or send a note. xoxoxoxoxox

family

Monday money madness: Batten down the hatches, it’s childcare season!

We had our fun in July.

My family got out and explored the world, ie, the Southern plains. Ma & Pa drank the good beer and even pulled off a few nice nights out.

Fun’s over, kids! It’s childcare season. Mark, a teacher and stay-at-home summer parent, had his first day of school today.

Continue reading Monday money madness: Batten down the hatches, it’s childcare season!

Total budget…breakdown

Welp, I just can’t lie. Our effort at running a tight ship on the money front went up in smoke this month.

Do you have any idea what kind of lattes they have in the D.C. area? I had a Mayan Coca and cayenne latte, people. I was there to learn about how to be a good soldier in the cause to cure cystic fibrosis, and eat all the baked goods, and drink all the lattes, at every little indie cafe I saw. NOMS.

noms noms noms noms
noms noms noms noms

Continue reading Total budget…breakdown

The ledger

One day at a time

Making a budget was the last thing on earth I felt like doing tonight.

A few days ago, Mark sent me a text. And by a few days ago, I mean, roughly 10 days ago, he sent this text:

Continue reading The ledger

Big pimpin’ on a budget

Budget, fools.
Budget, fools.

A few weeks back, Mark and I finally sat down and made a monthly budget.

To think, it only took us 5 years!

We made an appointment. Then we both forgot about it. Then, we sat down, a week late, and knocked it out.

My news workplace offered a Dave Ramsey (the ‘We’re debt free!’ guy) course to for free, so I signed up. One of the first thing Ramsey recommends is to get on the same financial page as your spouse.

Then he tells you to save a thousand bucks in an emergency fund and make sure you agree as to what constitutes an emergency.

He warned his viewing audience that that would mean a money fights.

At our first budget meeting, Mark and I didn’t really fight. OK, maybe we had a disagreement, sure, but fight’s too strong a word.

We knocked out a budget. Then we “discussed” the concept of “fun” money. We agreed we could each have $100 a month to put toward fun of our choosing.

“My fun’s almost been spent,” I confessed. “I bought two winter tops for work.”

We started to bicker about whether clothes should be a budgeted necessity or considered “fun.”

Then we realized something. We had already made a budget. We had forgotten to add any “fun” at all to the budget. So, we were fighting about dollars that didn’t actually exist.

I remembered I had $50 from my new waitressing job stashed in my wallet. I impulsively got a second job because Dave Ramsey told me to do it.

I mean, it’s not like I “needed” winter shirts. I wasn’t going to freeze without two brand spanking new stylish shirts.

“I guess this is yours,” I told Mark.

We plugged it into the Ramsey budget as “Fun-Mark.”

We next realized Mark had become my pimp. I turned over my cash earnings to him.

All in a day’s work. While I’m out slinging Spaten Dunkels and Bitburgers after my 9 to 5, he’s feeding and putting to bed two adorable-yet-high-maintenance under 4’s. Ya know who pays him? No one. Unless you count as currency Eli’s poo poos and Laila’s schemes to stay up later. Then we’re rich.

The good news is that we agree on core financial things, though Mark is more of a cheapscape minimalist than I am.

What constitutes an emergency? We agreed on three main things: car break down, appliance breakdown, and a medical emergency. And, ya know, natural disasters, but that’s a given.

Ramsey said it’s fine to keep saving once you’ve got a K in the pocket if you want something like furniture, etc. etc.

We want a vacation. I don’t care that we haven’t paid down our college loans and buddy’s medical bills. We need something to look forward to. Perhaps New Mexico. Or the ocean!

I asked Mark what was on his “savings wish list.” I found out one of his dreams was to fix our van door. Yes, we dream big. We have a trashy-looking door I wrecked while I raced to the ATM to get cash for our very first nanny, imposter Mary Poppins. Imposter Mary Poppins faked a lice scare on my daughter’s birthday to get me home early so she could quit. I wanted to pay her extra because I didn’t realize she was a psycho Mary Poppins imposter from hell. Thus, I raced to the ATM. Bolts in the ATM lane scraped the hell out of the van door. It has remained that way since. Classy.

We’d also like a new/used car – a little mini SUV. Something safer than the tin can that is our second car.

Budgeting was a good exercise for us. The course I’m taking makes it easy, with an online budget tool that forces you to give each of your dollars a destination.

It also forced us to review our spending for the first week of the month. We need to stretch a little a lot better, ’cause we blew half of our food and supply budget in a week.

There is room for improvement, but it’s a start!


Having a kid with a chronic disease shook us alive in a lot of ways. One of those ways has been the way Mark and I think about money. Instead of thinking things like “Oh, s***, we’re outta money!”we are making plans and stashing dollars. Along those lines, I attempt to write about money each Monday for a series called Monday morning money madness, which is usually in place by midnight. Check back in! Has the Ramsey way worked for you? Do you have any issues with the program? Any tips for dumpin’ debt and saving more? Let me know!

Reader mailbag: 4 more tips to boost monthly savings

I’m dippin’ into the reader mailbag for today’s post. I have one of those? Why yes. Yes I do. In this day-late (but not a dollar short) post on savings and money, I wanted to share a few tips readers sent me after last week’s post on 5 things that have helped us save about 10 percent of our take-home income.

I got distracted yesterday and strayed from Monday morning money madness — with errands and Dancing with the Stars…Amber Riley for the win…

Mark and I are continuing to save. We’re also targeting waste in food and supplies. It’s hard. We feel like we’re already living minimally, down to the nitty gritty. But are we…really? I slipped up and threw down almost $5 on a pumpkin spice latte the other day. Busted! Savings fail. That’s the kind of stuff we’ve been trying to cut out. Things are stretched. We’ve got two young children, all the fees and extras that come with two young children, plus a pile of medical bills relate to Eli’s cystic fibrosis and two hospital stays and surgeries. So stuff like lunches out and coffees, which were no-brainer “I deserve it” purchases before we started taking a little time each week to think money, have *mostly* gone by the wayside in favor of more savings, with the occasional slip-up. I totally busted Mark for Taco Bell. HAHAHA. After September, I want to see if we *actually* improved our habits or if I’ve just been blowin’ smoke.

“What else might we try to save cash,?” I asked readers. Here are some of their responses:

Continue reading Reader mailbag: 4 more tips to boost monthly savings