Friday, May 26, 2017

After The Flowers!? The Stunning Anza-Borrego Desert Is Actually Best Enjoyed After The Wildflowers Are Gone

Ah, the wildflowers of the Anza-Borrego Desert. They're the eye-popping, sweet-scented stuff of legend out here in Southeastern California. And this year's "super bloom" was the best show these flowers have given us in years, thanks to the near-biblical rains this winter.

Like just about everyone, we enjoy seeing the desert light up with these impossibly colorful flowers each spring. It's a natural and reliable phenomenon that annually and convincingly disproves the tired notion that there's no life in the hot desert.

But as beautiful as the desert flowers are, Borrego - and specifically Borrego Springs, the charming, underrated little town within these desert confines - is best enjoyed after the flowers have gone back into dormancy beneath the baked desert surface.

That may sound counter-intuitive. But it's not. Borrego really comes alive after the droves of well-meaning Lookie Lou's have caught their brief glimpse of the flowers and headed back home. it's a far more enjoyable, satisfying and relaxing trip. 

I'm not grumpy or anti-social. I like people. But I don't like the mind-numbing traffic jams that accompany the flower season. Coming out to Borrego when there are throngs of humans and long lines utterly defeats the purpose of coming out to Borrego.

The joys of breathing in the scent of the flowers are compromised, at best, when they're accompanied by the smell of 10,000 cars, trucks, motor homes and motorcycles.

So here's my obvious recommendation: Get out there now, before it gets oppressively hot. Right now, it's still in the high 90s, which, with the typically low humidity, is just fine. In May, there are no big crowds and there is no hurry, no worry. It's blissful. And fun. And, dare I say it, educational.

Warning: If you want until July to go, well, you'd better be a desert rat. It's hot.

Our favorite retreat in the world - La Casa del Zorro
If you do choose to spend more than a day in Borrego, the one and only place to spend the night(s), if you're not camping, is La Casa del Zorro, the desert diamond that I've been happily frequenting now for more than 30 years. It's my favorite getaway in the entire nation, hands down.

La Casa provides you with the perfect lodging experience. It's the closest thing to home, but better. The service is impeccable, the staff aims to please. It's a great way to come back to after a full day of hiking, exploring.

There is so much more to Borrego Springs than the wildflowers.

We come for the impossibly starry nights, the canyons, the hiking trails, the charming local shops (mall shop) and eateries (Carlee's), tennis, golf, critter watching (coyotes, bighorn sheep if you're lucky, road runners), the delightfully friendly and non-jaded locals, and, above all, the chance to exhale, relax, and be reminded why life is so worth living.

La Casa has has always represented a unique combination of rustic and classy. It is for all kinds of reasons among the finest hotels in America, without being pretentious.

We like to dig our hiking boots deep into the sand and climb every mountain, then come back to one of La Casa's legendary Casitas and hang out by our own private pool and review the day. Or we head over to the full-service spa, or the state-of-the-art tennis facility and hit some balls.

Other than staying at La Casa del Zorro, the other thing we highly recommend is checking out the Anza-Borrego Desert State Park Visitors Center. The knowledgable and pleasant staff will show you all the best hiking trails for those who want it easy, moderate or really challenging.

They'll answer any questions you have, and tell all the secrets of the desert. And if you get out there this Saturday, head to the Borrego Palm Canyon Canyon Campfire Center where a talk will be given on Anza-Borrego's miraculous star-gazing night skies, which are among the very best in the world.

You can explore constellations and planets in a way you perhaps never have before. Bring binocs, a flashlight (red lens is preferable). Ask for Sally Theriault, Park Interpreter.

Also be sure to ask the staff at the Visitors Center about how much life there really is in the seemingly lifeless California desert.

There is something so enthralling and inspiring about desert life, especially when you stop to consider just how hot it gets out here in the summer months.

The desert is in fact teeming with life. And it's life of the hardiest, most robust kind. You gotta be tough to live in these parts, be you plant, animal or human. You gotta be a true survivor.

As a three-time survivor of cancer myself, I have an even stronger connection to the critters of the desert than I did before I was diagnosed. They can endure a whole lot. Snd I guess I can, too.

The desert in the hottest months is Darwinism on high. It requires a toughness that only the 3,000 or so year-round residents of Borrego Springs possess.

So take a day, or a week, and head out to Borrego now, or at least by late June before the heat becomes too much. Get the best of all worlds: stay at La Casa, but do some hiking, walk until you are winded. There is no greater feeling than to be exhausted amid the majesties and nuances of Mother Nature.

As for flowers, well.... We don't need no stinkin' flowers!


Thursday, May 4, 2017

BREAKING NEWS: President of World's Largest Hematologist Group Blasts House Members for Callous Health Care Vote

Dr. Kenneth Anderson, Dana-Farber Cancer Institute
Kenneth C. Anderson, the renowned physician and researcher at the Dana-Farber Cancer Institute and president of the American Society of Hematology (ASH), the world’s largest professional society of hematologists, had some harsh and sobering words today for members of the House of Representatives who voted in favor of the American Health Care Act (H.R. 1628), also known as "Trumpcare."

“Since the early days of health care reform, ASH has remained committed to supporting access to affordable, high-quality health care for all Americans," Anderson said in a statement just released. "We are deeply disappointed that the House today passed a bill that would price the oldest and sickest Americans out of affordable health insurance coverage by waiving requirements for community rating and age rating, scaling back funding for Medicaid — a vital lifeline for many with blood diseases like sickle cell disease and hemophilia — and permitting states to opt out of requiring coverage for essential health benefits."

As the Senate picks up this reform package, ASH, whose members are focused on promoting research, patient care, education, training, and advocacy for blood diseases  --including cancers such as lymphoma and leukemia -- called on lawmakers in the more civil and sane of the two Congressional houses to ensure that the following principles are reflected in the final bill:

* ASH opposes any measures that discriminate against individuals with pre-existing conditions or that impose lifetime benefit limits.

* ASH urges that protections be included to ensure that consumers understand their coverage options.

* ASH encourages efforts to combat high drug prices by supporting legislation that provides for insurance parity between patient-administered and intravenous chemotherapy, curtails out-of-pocket expenses, and limits the cost of drugs placed into specialty insurance tiers.

* ASH seeks thoughtful consideration in tackling the opioid epidemic while avoiding unintended consequences that unnecessarily punish patients with chronic diseases, such as sickle cell disease and cancer.

* ASH recognizes the importance of coverage for ambulatory, emergency, hospital, and laboratory services in properly and effectively diagnosing and treating patients with hematologic malignancies and chronic hematologic diseases throughout all stages of their care.

* ASH opposes any move that would waive individual states’ compliance with the above protections.”


Thursday, April 27, 2017

Were You There, Too? My Scrapbook of Favorite Live Music Moments

The epic 1987 Joshua Tree Tour
I've spent a good portion of my life flicking my Bic. That is, I've attended a whole bunch of music concerts in large, medium and small venues. It all started in August, 1972, when my parents took me to see The Guess Who at the Iowa State Fair. I was 12, but already a big music fan, a somewhat accomplished drummer and a soon-to-be guitarist who listened to music every day. And night. 

When The Guess Who's lead singer Burton Cummings screamed "American Woman," then whispered "These Eyes," then the entire crowd, us included, clapped along with him on "No Time" during the show's finale', I was hooked. I knew at that moment that live music and I were going to have a lifelong relationship. 


When my family moved to Las Vegas the following year, I got the opportunity to see all kinds of live music with my dad, who was a radio and TV personality who got to go to all the great Las Vegas shows of that town's Golden Age. I was fortunate to see Elvis, and Sinatra, and Sammy, and Dean, and the list goes on. 

And it's never stopped. I still love live music, almost all kinds of live music. Be it in a bar, a back yard or a stadium. I don't have an official count, but I would estimate that I've seen at least 1,500 concerts in my lifetime. And only a small handful were not worth the time or the money. So, after reading some of my friends' posts on Facebook about their favorite concerts, I decided to follow suit -- but without the one lie, without the one concert that I did not attend. Yes, I attended all of these below.

Here's a short list of the concerts that have stuck most indelibly in my memory. The ones that come up first when I try to summon up my life of enjoying live music. I've also included links for you to setlists, photos, tickets, etc., for each and every concert, just for kicks.

These are not in chronological order, they're literally in the order in which I remembered them. And but for a few of these shows that I either reviewed or previewed as a journalist, for most of these shows, I went simply as a fan, not as a journalist or critic. Perhaps you saw some of these shows, too? If so, or if not, please chime in below. I'd love to hear from my fellow live music lovers on this.

What concerts entertained and inspired you the most?


MY FAVORITE CONCERTS:

Elvis Presley - Las Vegas Hilton, September 1973: Yes, this was the slightly older, less energetic Elvis, but he was not yet visibly ill or grossly overweight. He was still amazing. Elvis was a truly tragic rock and roll figure, and of course an immeasurable talent. He's immortal. And thankfully he's still everywhere.

Frank, Ella and Basie at Caesars
Frank Sinatra - Caesar’s Palace Las Vegas, January 1974: Frank ruled the world. He had lost a bit of his vocal chops and range, but he was still the master, the greatest singer ever to walk the earth. His legend looked very large in the Reno house, where I would regularly listen to Frank's swing records right alongside the Beatles. I couldn't believe I was actually seeing him in person.

Elton John - Las Vegas Convention Center, October 1975: At the height of Elton's deserved mega-fame. His genius for melody writing aside, there was no one in pop music history who had more raw and real energy and enthusiasm on stage. At the moment when I saw this concert, Elton was the center of the universe, the biggest thing in popular music since the Beatles. And worthy of it all. I remember when rock was young.

U2 San Diego Sports Arena, April 1987: In many ways, this was my favorite concert of them all. The poignance and majesty of this band's music has floored me from the start, and it has never been matched. And "Joshua Tree" was and remains their towering achievement. Sorry Beatles, sorry Stones, but this is the greatest band of all time, and easily the greatest live act on the planet, then and still. And the band's current 30-year "Joshua Tree" anniversary tour will be as relevant as if it had been released this year.

Stevie Wonder – Humphrey’s, San Diego, August 2007 : A rare opportunity to see Stevie in a very small venue. I interviewed him for this concert for Newsweek. One of my favorite interviews of my entire career. After about 90 minutes on the phone, he ended up kindly and shockingly insisting that I play him a couple of my songs. Are you kidding me, Mr. Wonder? Omigod, I'm not worthy!

Jackson Browne - Hilton Coliseum, April 1978: My senior year in high school, me and my three buddies, Mike Stauffer, Mark Davis and Blake Mishler, drove up to Iowa State University in Ames from West Des Moines to see Jackson's legendary "Running on Empty" tour.  It was the greatest album ever recorded about live music and touring, and the greatest song about same was Jackson's "The Load Out/Stay." Fantastic concert. As good if not better than the album.

Peter Frampton - Aladdin Theater for the Performing Arts, Las Vegas, July 1977: Do You Feel Like I do? Frampton was in his full rock star glory here. The most underrated rock guitarist of all time, Peter has been unfairly lumped in with disco and all the other kitschy 70s trends. He's a rock legend and deserves to be in the Rock and Roll Hall of Fame.

The late Terry Kath (hat) and Chicago
Chicago - Iowa State Fair, Summer 1974: This was when Chicago, my favorite band since I was eight, was the most popular group in the world. I hitchhiked to this show across Des Moines with my best pal Donny Anderson. If our parents knew they woulda killed me. This remains one of the biggest concerts in Iowa State Fair history, with 24,700 people, and in my memory forever, especially because it was the last time I saw Chicago's legendary lead guitarist Terry Kath before his tragic and untimely death. 

Natalie Cole - Anthology, San Diego, September 2009: Rest in peace, Natalie, you were the greatest female singer of them all. Natalie sang jazz better than Ella, she sang soul better than Aretha, and she sang pop better than Whitney. And the sadly now-defunct Anthology, the classy old-school nightclub in Little Italy, San Diego, was the perfect venue for her to show off her inimitable talent and charisma. 

Pink Floyd - San Diego Jack Murphy Stadium, 1994: A mind-blowing night, even without Roger Waters, that left me "Comfortably Numb."

Guns N' Roses - Jack Murphy Stadium, 1992: Welcome to the Jungle. These guys were a real bright spot in the 90's, the worst musical decade by far for rock music. It's heartening to see this band (mostly) back together and touring again after so much vitriol over the years.

Rolling Stones - Jack Murphy Stadium, 1994: The legendary Stones, in peak form on this tour. But then when are they not?

Crosby, Stills, Nash and Young, Don Henley, Timothy Schmidt, Chris Hillman  - Santa Monica Civic, 1991 - Poetic and powerful night of acoustic music that I reviewed for the old San Diego Tribune (can't find a link).

The Clash, Men At Work, Oingo Boingo, Flock of Seagulls, English Beat, INXS, Stray Cats - US Festival, near Los Angeles, 1983: It was called "New Wave Day," I recall. Amazing lineup in the early 80's, my college years. But for me, Men at Work were the highlight. Eternally underrated band with a truly great singer-songwriter in Colin Hay.

Paul McCartney - The Pond in Anaheim, 2002: I've seen Sir Paul several times, but this somehow was the most memorable. When he sang "Fool on the Hill," well, it remains the most beautiful, transcendent musical moment for me of any concert I've attended. 

The Eagles - Hell Freezes Over Tour, San Diego Jack Murphy Stadium, June 1994: Had a front-row seat for the concert that I had dreamed about for years but never thought would happen. It did and it was even better than imagined.

Simon and Garfunkel - Dodger Stadium, August 1983: Musical perfection, even in an awkwardly shaped, clunky baseball stadium venue. 

The Who - Jack Murphy Stadium, August, 1989: Long Live Rock!

Brian Wilson - Del Mar Fair, Pet Sounds Tour, 2016: My preview of this concert above was pretty laudatory, but this show lived up to and exceeded my hype. It was Brian Wilson, happy, and with his full genius on display. An amazing survival story for a man who was down and out for so many years. It touches my heart every time I see him walk on stage, but especially at this show, with the ocean in view, and with Brian singing cuts form arguably the greatest rock album ever.

The Guess Who - Iowa State Fair, August 1972: My first concert, as I mentioned, was the Guess Who, the Canadian hitmakers whose lead singer Cummings is still the best rock singer of all time. I had just turned 12. And yes, I had a date... but my mom took us and picked us up. 

Yes - San Diego Sports Arena, The Union Tour, May 1991: Another of my very favorite bands, led by the angelic, ethereal, brilliant Jon Anderson, who finally got his overdue props at the Rock and Roll Hall Fame. This concert was fantastically weird, and weirdly fantastic, with members of each of the Yes incarnations jamming happily together. We can all get along! 

Dire Straits - Open Air Theatre, San Diego State University, the Brothers in Arms tour, September 1985: Catching another great band on the top if its wave of fame. Too bad Dire Straits founder, lead singer and lead guitarist Mark Knopfler now stubbornly, selfishly, preposterously refuses to play Dire Strait songs in his concerts. 

Other favorite shows include James Taylor, with the San Diego Symphony at Copley Symphony Hall, November 1995 (America's finest singer-songwriter with a fine symphony orchestra, what's not to love?); Steely Dan - L.A. Greek Theater, 1993; Jim Messina - Arlington Theater Santa Barbara, 1980; James Cotton Blues Band - Blind Melon's, San Diego, 1995; Randy Newman - Humphrey's, 1985; David Crosby - The Bacchanal San Diego, 1986; Peter Gabriel - L.A. Forum, 1987; Hall & Oates, Humphrey's, 1998: Everly Brothers - Humphreys, 2005; Kenny Rankin - Elario's La Jolla, 1993; Roger McGuinn - Bacchanal, 1988; Smokey Robinson - Sycuan Casino, 1998 (Smokey just kept singing, in a torrential rain); Dan Fogelberg - Humphrey's San Diego, 2000 (rest in peace to the guy who more than anyone else, sparked my interest in writing songs and playing acoustic guitar); Cheap Trick - Bacchanal, 1987 (nothing like seeing this band, finally Rock and Roll Hall of Famers, rockin' out in a cool, small venue like the Bacchanal. Does anyone remember the Bacchanal?

So, there you have it. There are about 1,000 more about which I could write. But I don't have time, I'm headed to a concert. See you in the aisles!

Monday, April 24, 2017

Concert Review: David Crosby Inspires, and Disappoints, at Humphrey's By the Bay

David Crosby  - Photo by Jamie Reno
Singer-songwriter David Crosby (left) performed for three hours last night at Humphrey's By the Bay in San Diego with his stellar band. It was a nice night of music. But it was also hugely disappointing.

Crosby, the legendary and legendarily cantankerous member of the Byrds, Crosby, Stills & Nash, and Crosby, Stills, Nash & Young, played only a few songs that most fans last night readily recognized ("Deja Vu," "Long Time Gone," "Delta"). 

The gracefully aging sailor instead chose to play a boatload of more obscure tracks from CPR, the jazz-tinged rock band he formed with his son, James Raymond, and acclaimed studio guitarist Jeff Pevar. 

CPR is a good band. Highly underrated, in fact. But is David or anyone else delusional enough to think the folks who filled Humphrey's last night came to hear CPR songs?

Crosby also played some tunes from the various Nash-Crosby collaborations. Good songs, all, and the band was tight. The harmonies were amazing. And Pevar all but stole the show with his fret mastery. 

But even Crosby acknowledged during the concert that most of the tunes on the setlist are probably not known by the audience. 

I felt slighted. Cheated. And a bit miffed. And clearly I wasn't alone. By the three-hour mark, nearly half the audience had bailed.

Granted, it was an older demographic, some of these boomers were probably just getting sleepy. But it was obvious that while this crowd loved David Crosby, they were none too pleased with his choice of songs.

The fact that this beloved artist, who, God love him, is 75 years old and looks healthy and happy, repeated the same rambling story/diatribe about politicians in the first half of the show and the second, verbatim, didn't help matters. 

But we could have forgiven him that minor sin had he tried a bit harder to please us. It's not that tough to please fans who love you as much as we do, David.

As a singer-songwriter, I respect the fact that an artist wants to play the new stuff and obscure stuff and some of the personal favorites, not just keep performing the same old hits over and over and over again. It's an age-old musician's dilemma. I get it. 

But I also believe artists have an obligation to play the songs that paid for their mansions, the songs for which they are famous, the songs we all know. The songs of our lives.

At the Crosby, Stills and Nash show reviewed here that took place two years ago in San Diego, they did it right. They played the hits, but each of the three particulars (Crosby, Stephen Stills, Graham Nash) also introduced several news songs. 

Most fans enjoy hearing the new stuff. At least a few songs. It's a delicate balance. But it bothers me when a veteran artist like Crosby, whose records haven't really sold in decades, forgets why his aging fans keep paying to see him. 

Last night's show was good, and at times great. I was into the music all night. But it was frustrating. 

David, if you ever happen to read this, before you get pissed off and throw your laptop at me, just please consider this:  Don't ignore your sacred canon. Don't take your fans for granted and slight us just to please yourself. 

Please consider putting in your set a few more tunes we all know and love. It won't kill you to make us happy. At least put in "Wooden Ships," "Almost Cut My Hair," and "Guinnevere," for crying out loud. 

We all love you, and no, you're not selling out just by adding a few tunes that made you famous. To play three hours and not include a few more songs that you know full well will lift and inspire your adoring fans is just selfish. 

But then, this isn't the first time you've been accused of that, is it? Truth is, you were having more fun on that stage last night than we were having in the audience.



Friday, April 21, 2017

Resolved: Founding Father and Constitutional Framer James Madison Was Not an Originalist, and Would Not Have Voted for Neil Gorsuch

Supreme Court Justice Neil Gorsuch and President Donald Trump 
Some of my best conservative friends are defending "originalism," the tired notion espoused by new Supreme Court Justice Neil Gorsuch and others that the United States Constitution is not a living, evolving document. This is of course nonsense. 

Harkening back to my college debate days, allow me to don my cob-webbed, dark-blue blazer and resort to some unfair tactics (appealing to your patriotism) to cement my point.

It was none other than James Madison, loving husband of Dolly and one of our country's cherished founding fathers, who said at our nation's Constitutional Convention that in framing a system which we wish to last for the ages, "we should not lose sight of the changes which ages will produce.”

You go, James! And no, he wasn't referring to the Constitutional amendment process, which is cumbersome and very, very difficult to do.

The great irony of the current originalism debate, or perhaps it isn't irony at all, is that many of our founding fathers were clearly not originalists, as far as we can tell. Madison outspokenly supported the idea of a living and flexible US Constitution, one that changes over time.

Why? Because it's what is right and decent, and because it is the only thing that makes sense. 

The US Constitution is the greatest framework for democracy in the history of the world. But viewing this document as inflexible, while interesting in theory, is silly in practice. 

It just doesn't work, and it's preposterous to suggest otherwise. Scalia and Gorsuch? Both dead wrong on this issue. It just can't be wisely or convincingly argued in their favor.

The document, which was written centuries ago exclusively by and for white, male property owners, many of whom owned slaves, has an obviously and inherently biased outlook. It is a good guide, the best, in fact, but it should not be taken verbatim all these hundreds of years later.

The proof of the inherent dangers of originalism is inadvertently but very obviously revealed by just who supports it. 

Who more than anyone else wanted Gorsuch to be the newest member of Team Robe, also known as SCOTUS? People who were literally praying for his nomination, that's who. 

Yes, folks who want to impose their religious values and beliefs and interpretation of God on the rest of us. 

I greatly respect everyone's beliefs, but forcing the on people is not what America stands for. In fact, many of the founding fathers were not Christians at all, they were Deists.

As legal and Constitutional scholar Andrew Shankman wrote recently, Madison’s framework demanded that the American people "maintain their right through time to be the final arbiters of constitutional meaning through popular politics and the thoughtful expression of public opinion."

Legal scholar David Strauss recently said, "Originalists simply do not have an answer to Thomas Jefferson's famous question: why should we allow people who lived long ago, in a different world, to decide fundamental questions about our government and society today? Originalists do not draw on the accumulated wisdom of previous generations in the way that the common law does."


Indeed. David nailed it. 

He added that originalism "forbids the judge from putting those views on the table and openly defending them. Instead, the judge's views have to be attributed to the framers, and the debate has to proceed in pretend-historical terms, instead of in terms of what is, more than likely, actually determining the outcome."

So, in closing, and in honor of my old college debate coach, I say, Resolved: Originalism in 2017 is simply a more palatable term for judicial activism! And/or, Resolved: A living, evolving interpretation of the US Constitution is a must in a free society!

I could argue for both, until the cows come home.

Wednesday, March 15, 2017

A Beloved Old Friend Stares Death In The Face

The cold, cruel world paid a visit this week when a lifelong close friend of mine sent me this devastating note below telling me that she has been diagnosed with a rare and fatal disease. She was diagnosed two years ago, but kept it from many of her friends. But she summoned up the courage to disclose it to me. I'm shocked, and heartbroken. Her terrible news just stopped me in my tracks. But I'm proud of my friend's courage, and inspired by her will to live. And I'm sharing her letter with you. Because she wants me to. And because it's important. She asked that I please use an alias for her. She prefers not to use her real name. Because if she is able to get off disability, she fears she will not be able to find work, as she is well known in her community. That's of course the very least I can do for my beloved old friend.
                                                                             --- Jamie Reno


Dear Jamie,

I’ve always said that life can change in a blink of an eye. Mine did, in January 2015, when I was diagnosed with idiopathic pulmonary arterial hypertension (PAH).

A very rare disease, PAH affects 1 in 150,000, or 7 to 8 people in 1 million. Putting it in perspective, that would mean that in New York City, approximately 56 to 64 people are afflicted with PAH.  

It's a chronic disease in which the arteries in your lungs become narrowed, making it harder for blood to flow from your lungs and thus raising the pressure in those arteries.  

This causes the right chamber in your heart to work harder to pump the blood, eventually causing the right side of your heart to weaken and fail.

My disease is fatal. I know how I will die: from a massive heart attack. As I write this, the right side of my heart is three times its normal size. If I don’t die of a heart attack, I will slowly suffocate, gasping for every breath.

Before I found out that I was sick, I decided to leave my corporate job and establish my own company. I had a full medical physical while I still had health insurance with my company. 

I saw a heart doctor, lung doctor, ob/gyn, eye doctor, and my primary care doctor. I did have some shortness of breath, but all the doctors assured me that if I lost a few pounds, I would feel better. 

Great! I had the green light to start my own company. I felt like I had the knowledge in my field to be successful, and grow a company from the ground up. I quit my corporate job of over 25 years, opened my own business, and hired an employee. 

Still, I was short of breath. I had COBRA insurance, and started seeing heart and lung specialists. When I didn’t feel I had gotten a good answer or report, I saw another specialist. And then another.   

I just knew something was off.  Why could I not walk a few feet without getting short of breath? Each specialist thought that I should either lose some weight and/or that I had asthma.  

I started using inhalers, but they did not seem to help. And the shortness of breath was getting worse.

My work is very physical, and can require me to be on my feet sometimes as much as 12 hours a day.  How could I keep my company going, if I can’t walk more than a few feet without having to stop to catch my breath? 

In December of 2014, I noticed that my feet were very swollen. I mean so swollen that I could barely put shoes on. I called a heart doctor, and when he saw my feet, I could see in his face that he was alarmed. He said we need to do a right heart catheterization. Now. 

I prepared for the procedure, and afterwards, he came into my room and said, “Katie, I think you have pulmonary hypertension." I thought, "So, okay, fix it."  He said, “Katie, this is bad. Really bad. I need you to see a specialist.”

He set up an appointment for me with a specialist at a local university hospital. I didn’t know it at the time, but I was assigned one of the finest pulmonary hypertension doctors in the country. I found out that day, that I had this disease, and I began to process exactly how serious it is. There is no cure.  

Because mine is idiopathic, the doctors are not sure how I developed this disease. Since it took so long to diagnose, which is not unusual, my case is Class III, severe.  

Meaning that my heart is in severely bad shape, and that my ability to breathe has become labored with doing normal activities such as bathing, dressing, fixing my hair, laundry, grocery shopping, household chores.  

When you've moved into Class IV, you have trouble breathing while just lying in bed. This disease is often misdiagnosed as asthma. Only a pulmonary specialist can diagnose it, and only after having a right heart catheterization.

I asked my doctor, “How long do I have?”  

He wouldn't answer, but did tell me, “If you don’t take any medication, you will die within 6 months.” 

Six months. I was that sick. I am that sick.

"Great, so now I’m sick," I said to myself. "I’ve only just started a new company a little over a year ago. And I took all my money out of my 401K to put into my company. Oh, and my COBRA is about to run out in 4 months. What the hell am I going to do?"

My doctor started me on two drugs to help slow the progression of the disease, and to help open the arteries of my lungs. There is no cure – there is no possibility of getting better. But they can hope to slow the progression of the disease.  

One drug is called Adcirca and costs $3,418 per month, the other is Opsumit and costs $7,839 per month. That’s $11,257 each month, or $135,084 per year. 

My doctor puts me in touch with a foundation in Virginia which helps people with the top 20 rare diseases in the world. Thank God for these people, as they helped me to navigate the choppy waters of insurance and social security disability.  

After many long conversations with this foundation, I decided that I would need to sell my company and go on disability and Obamacare. That would be the only way I would be able to afford my medication.  

It’s simply too expensive to pay for it with private insurance.  Even with private insurance, my deductible was over $10,000, and each month my medication would have cost me a minimum of $800, out of pocket.   

Meeting those types of numbers each month was out of my reach. I don’t think I could have even done it when I was making a high corporate salary. Being sick is very expensive.

Had it not been for Obamacare when my COBRA ran out, I would already be dead. I had a pre-existing condition.  

I would have had to declare to any insurance company that I had PAH. And my medications were very expensive. Not one company would have insured me. 

Although I was “maintaining” my numbers with my disease, I was not improving with my six-minute walk tests. So in June of 2016, my doctor started me on another medication, hoping that perhaps I would be able to walk further without so much shortness of breath.  

This drug, which was just recently approved by the FDA, is called Uptravi. It costs $22,324 per month, or $267,888 per year. Now for just three medications, my costs are more than $400,000 per year. 

I take 41 pills a day to stay alive. Pills for depression, allergies, water weight gain, potassium… the list goes on and on. My medications all together cost nearly half a million dollars per year. If I won the lottery, it would be gone very quickly, just for paying for mediation. Half a million per year to stay alive.

I'm a single, white, college educated, well-read woman in her mid-fifties who made a nice corporate salary that allowed me to purchase my own home and travel whenever I desired. I wanted for nothing.  

I ate out in nice restaurants nearly every day, and enjoyed a nice lifestyle with my friends and family. I thought I would be just as successful opening my own business. I had, after all, more than 30 years of experience in my field, and was well known in my community.  

I had all the components needed to be successful. Except my health. Little did I know, I had been sick for many years. 

I’m also a women who's worked since she was 14 years old.  I worked every weekend during high school, and during the summer I worked over 40 hours per week. 

During my first three years of college I had a part-time job, and took a full-time job my senior year. Now, in my mid-fifties, I’m on disability.  

To look at me, you would have no idea that I take 41 pills a day and am forced to live on disability because I can’t afford the premiums and the deductibles with my illness. 

However, I do not feel guilty for being on disability. I put into the system for 43 years of my life. I paid 25% of my salary for taxes. I paid my dues.

But I thank God for Obamacare. It allowed me to get insurance, when I first discovered I was very, very ill. No insurance company could refuse me, no matter the cost of the drugs. No matter my diagnosis. 

I’m scared to bits thinking of what Trump and the Republicans will do with healthcare. I will be eligible for Medicare in the summer of 2017. 

What will happen to me? 

I would say to everyone who thinks Obamacare didn’t do much – think of me. 

I would say to everyone who asks, “Why is it the responsibility of the government to make sure every American has health care?” I hope they think of my story. 

Because without help from the government, I will die. With no access to drugs, I will die within 6 months.

Thanks for listening, Jamie. 

Your friend always,

Katie