Episode 57: From Peak to Poverty, Thanks to Poor Health: This Story Could Be Yours

There is "no difference among men, in intelligence or race, so profound as between the sick and the well" (F. Scott Fitzgerald, The Great Gatsby).

I was born with far more advantages in life than so many others on the planet.  From parents who loved me and were committed to giving me the best possible childhood and who made enough money so that I never worried about having food in my mouth or a roof over my head, to the happy accident of being raised on the outskirts of Washington, DC, one of the most powerful cities in the world with a myriad of opportunities, I have been utterly blessed.

Good grades came easy to me, and as I've bragged numerous times, I scored in the 99th (the highest) percentile in abstract reasoning in the standardized Iowa tests given to schoolchildren in many states, meaning that my scores were better than 99 percent of the rest of those kids.

My father's successful career in electronic engineering--with a patented update to a radar altimeter that flew in all commercial aircraft of the 60's, if I correctly recall what he told me--gave us a comfortable home. My brother followed in my dad's enterprising footsteps, becoming a computer whiz on the ground floor of that industry, retiring at the age of fifty as the head of computer security at a big state university, itself known for its technological advances.

My mother was, and my sister and other brother are, certainly no slouches in the intelligence department. Mom's facility with language gave her a sharp (but friendly) wit--she could not let a pun pass her by--and a talent for writing silly but clever poems for friends retiring and for scrap books for my kids.

Fresh out of college after taking off a few years to travel as a young, idealistic member of the hippie generation, my sister landed a plum job in a big suburban county teaching English in a magnet school.  My brother, who won a golf tournament at the age of sixteen, went on to purchase and run a highly successful hardware store close to Dupont Circle in Washington, DC, and acquiring property in that high-priced area through the years.

And then there's me.

Like I said, I had all the promise in the world.  I did have a couple of deficits, though, which no one realized when I was young--not even me, though I certainly felt their effects. These, generalized anxiety (plus a healthy dose of social anxiety) along with attention deficit disorder (ADD), made navigating the difficult waters of growing up more difficult for me than for my siblings--though that ride isn't easy for anyone. It's just that my siblings landed in better spots than I did, despite my many years of trying.

After skipping my junior year of high school and graduating at the ripe old age of sixteen, I (stupidly) decided college wasn't for me and opted for secretarial school instead. I was tired of school (that ADD thing), and I wanted a life like Mary Tyler Moore's on her popular show of the day--independent professional woman with her own cute apartment.

But by the time I was nineteen, I was married to my high school sweetheart, and we consciously began a family. Having been temporarily seduced into joining the Mormon church, I couldn't wait to hold a baby in my arms like those in the arms of all the other women at church.  During those years, though I adored my babies, I regretted I hadn't gone to college and took a few classes when I could: Novel writing I and II, British Literature I and II, Intro to Philosophy.

And then--BOOM.  Blessed childhood, future full of promise--all came to a screeching halt.  The first clue that my life wouldn't be as perfect as I'd always expected it to be came when my first baby arrived two months early and suffered several severe health problems, including a skull malformation known as craniosyostosis that would affect his appearance and his psychic health forever (though the latter, I'm so happy to say, is very good at present, and I hope and pray it will continue to be so--and his appearance is absolutely beautiful, and I'm not just saying that because I'm his mom). In fact, I'm convinced to this day that my difficult pregnancies were the first real signs of the neuromuscular disease I'd later be diagnosed with.

My twenties were tough--but you can see how happy I am
holding my little preemie son (at two months)! He, and I,
unfortunately, had many health problems to come.

Then my dad dropped dead of a heart attack after a night out ballroom dancing with my mom, as they'd met some thirty-eight years before. And just four years later, my mom, who had battled breast cancer and then liver and pancreatic cancer in those four interim years, died in her bed in the home they'd bought in 1949.

My marriage, not surprisingly, given our young ages when we married and lack of much of anything in common, fell apart.

That about sums up my twenties.

Determined to make my thirties better, and to honor my dead parents and their shared belief in the value of education, I moved with my two little boys to a little mountain town in Appalachia with a state school.  My goal was to teach English.

I'd wanted to teach since I was a little girl, and I'd wanted to write since I was a little girl, too.  I used to dictate stories to my mom, who would type them up, leaving big blank pages for me to illustrate. Once I began English classes in junior high, I knew that's what I wanted to do. But after graduating from high school, my pathological shyness made me doubt I could stand up in front of a bunch of kids and command a classroom--and what was the point of going to college if I couldn't be what I wanted to be, I'd reasoned at the wise old age of sixteen.

I had so many wonderful teachers through the years who'd encouraged my writing, from Miss Rosenthal in fourth grade who'd assigned weekly compositions, to Mr. Bayz in eighth grade who'd declared my inscaping piece on the ocean "hauntingly beautiful," to Mrs. Righter who'd felt I was wasting my time in a regular core class and referred me to a gifted reading specialist who had me doing independent work while still in 8th grade, to Mr. Fowler and Mrs. Crowe who'd read my papers and stories out loud to my 9th and 10th grade classmates, to the even longer list of English professors who'd influenced me in so many ways as I worked through a BA, then MA in English, and on to about twelve credit hours into my PhD program in English.

I wanted to be one of them, and after my parents' deaths made me the beneficiary of enough money that I could choose a new life for myself, I decided it wasn't too late to pursue my dream job, even if I still was pathologically shy. I told myself I'd get over it, and eventually I did.

In the fourteen years between graduating from high school and enrolling full-time as a college freshman at age thirty, I'd worked as a legal secretary in a small firm in Silver Spring, and then in a large corporate firm in DC: Arent, Fox, Kintner, Plotkin and Kahn. I worked for one of the top international partners, and my skills were in high demand whenever I could manage to work overtime (which was difficult since I had my little boys at home).

I was promoted in the firm to the personnel coordinator, overseeing the leave requests and scheduling of 105 secretaries and assisting the Director in hiring and other personnel matters. I went on to become the assistant Attorney Recruitment Director.

Then I tired of the long commute and took a job as a senior secretary for a government engineering contractor at NASA's Goddard Space Flight Center.

But I was dissatisfied being "just" a secretary, and when my parents' estate settled, it seemed my career could do nothing but soar when I left Goddard to move to the mountains and pursue my dream of teaching English.

And my dreams continued to soar as I worked through my classes, earning A after A. I was where I was meant to be. When I graduated in 1994, I received Departmental Honors from the English Department, given to one student per graduating class.  I also took General Honors and graduated summa cum laude. 

The icing on the cake was receiving the Maryland Collegiate Honors Council Outstanding Honors Student of the Year award, also in 1994.

While working on my degree, I took care of my boys as a single mom and worked part-time at a local community college, where I eventually moved into planning and facilitating health courses for licensing and accreditation of health professionals. One of my coworkers, a woman nearing her sixties, told me during that time:

"The world is your oyster. Once you get this master's degree, you will be able to command your salary."

I was admitted to the West Virginia University Master's program in English and was granted a Graduate Teaching Assistantship with tuition waiver, as well as other scholarships. I took a job in a non-profit health education agency just after finishing my Master's Degree, and again I excelled.

When a co-worker became sick and was unable to write a big federal grant application to continue a program employing several of the persons at the agency became ill, and our associate director who normally would have taken up the slack was on vacation, I took on the job and, in one week, wrote a major grant application that was funded for close to a million dollars. From that point on, I wrote numerous federal, state, local, and private grants, garnering millions of dollars in the total of nine years I'd eventually work there.

Never happy letting an opportunity go by, when the non-profit agency's health librarian left the job to take a position as an executive director at another agency, I enrolled in a library science Master's program at the University of South Carolina and graduated with 3.98 grade point average a year and a half later while working full-time.

Ironically, the one "B" I received during that Master's program was in grant writing, something I'd done successfully professionally for some time by then. (I'd missed one of the minor requirements, as I recall.)  However, I turned the application I'd written for that class into a viable one, submitting it to the federal Institute of Museum and Library Services. And we won a National Leadership Grant with that application.

As much as I loved that job, though, eventually I landed my dream job:  teaching English in a two-year college in West Virginia which, after my first year, became part of the system of my alma mater, West Virginia University. As hard as that job came to be--teaching freshman English to 28 kids per class with a five-course load is enough to kill anyone--I had finally arrived exactly where I was meant to be.

I loved teaching. I didn't love grading, but I did it with every ounce of my soul, wanting nothing more than to help each individual student reach his or her writing potential. I still believe fervently that the ability to write is the key to success in academia and beyond. And I loved being the slightly wacky English professor who walked into her Poetry and Drama class wearing a Greek toga (over her "normal" clothes), a band of laurel leaves in her hair, demonstrating strophe and antistrophe while reading aloud from Oedipus Rex. 

When teaching Hamlet, I'd assign key scenes to groups, and the students would practice and bring in props and eventually act out their scenes on the stage in the building where I taught. I still have a plastic sword brought in by one class's Hamlet--he'd never come to my office to retrieve it, though it was his little boy's. Another Hamlet scored a skull from the Biology Department for his "Poor Yorick" scene.

One of my students as Hamlet, with a skull he'd scored
from the Biology Department, acting out the "Poor Yorick" scene

After a class in which students took different parts in Christina Rossetti's "The Goblin Market"--twittering as the eroticism of the dialogue came alive, several of the students left the room calling out in the hallways: "Come buy! Come buy!"

An Appalachian Lit class became a learning experience for me, as every student in the class had been born in West Virginia, while I was a Washington, DC, native! The final paper involved each student's telling his or her story about growing up in Appalachia, from the daughter of two hippies who'd spurned the city to homestead in the mountains to those who had grown up in the near-by town of Piedmont, immortalized in Henry Louis Gates' memoir, Colored People. 

Gates himself had attended the school where I taught, as I informed every amazed class I stood before, and he'd been inspired by his English professor, Tony "Duke" Whitmore, to pursue a degree in literature rather than medicine. The Duke had died three years prior to my starting at the college, and I wonder to this day whether I'd still have a job if he'd still been president when I became sick.

I wanted to be a Duke Whitmore inspiring students to love literature. I wanted to be a Mr. Keating in Dead Poets Society, a "Sir" in To Sir With Love, a "Teacher" in Catherine Marshall's Christy. I was thrilled to be working in a school whose students weren't born with silver spoons in their mouths. My "kids" came from the hollows of West Virginia and distant inner cities where the college recruited. I loved the "C" student in whom I could make a real difference; I knew the A's and B's would be fine. Of course, I enjoyed them, too, and I admired them, and I tried to help those struggling with D's and worse.

And I was well on my way to achieving what I thought would be my lifelong (if a bit late) teaching career, earning merit points based on my student, peer, and Review Committee evaluations. In my six years teaching, I was nominated "Outstanding Professor of the Year" twice--the awards went to professors who'd been there longer--and, in a school newspaper poll of fifty students in the cafeteria, I was runner-up for "Most Unforgettable," second only to the beloved cafeteria lady, the students' mom away from home! And I was told by the campus provost, just a few months before being given my pink slip, that I was a "shoo-in" for tenure.

I remember walking across the quad under the massive oaks and maples, realizing that yes, Mary, you finally did it!  You have found the place where you'll be the rest of your life, doing exactly what you've dreamed of doing your entire life.

I had a campus full of friends in the coworkers I enjoyed every single day, along with the fondness and appreciation of most of my students.  On the little board outside my office, where I hung my New Yorker cartoons as many other English profs had done before me, a student had written at the end of the semester:  "Ms. Spalding rocks!"

And then I was out on my ear.

Why?

Because I got sick.

Yes, this is the simple truth.  No other truth exists.

Beginning in the years I was going to WVU for my Master's classes and working at the community college and then the non-profit agency, my stamina became an issue.  Yes, I was doing a lot, but I began feeling like an 80-year-old woman.

Long story short, I came down with severe, intractable hypertension at the old age of 38, even though I wasn't overweight or stuffing myself on salt or anything else. My only risk factor was my father's legacy of hypertension.  That was enough.

Through the years, my health tanked.  After thirteen years of blood pressure regularly going as high as 208/135 (that was the worst, but it came close to that nearly daily in my last year of teaching), I was finally diagnosed with an adrenal adenoma, adrenal hyperplasia, and primary aldosteroism, also known as Conn's Syndrome.

Shortly after that diagnosis, I spent a summer in apparent heart failure and, determined to get to work in the fall, kept telling myself I'd feel better until one night I was certain I was going to die and went to an emergency department.

I was admitted, told I was indeed in heart failure and had probably had one or two heart attacks already.

There I was, forty-nine years old, on my deathbed.

And from my deathbed I talked to my chair in the English Division at my college, who covered my classes. But I didn't get better, and it was clear I'd need yet another semester off.  (I'd taken one off when the adrenal problem became known, and then I'd worked .6 FTE the following semester in the tutoring center while trying to regain my strength.)

And because I wasn't worth another 15 weeks of recovery time--I truly believed then that, once I was adequately treated for the newly found adrenal problem I would be able to go back to work without any problems--I was told I wasn't wanted back.  This, as I say, just a few months after the campus provost told me I was a "shoo-in" for tenure.  What had changed?  Nothing but my health. And if you think a person can't be canned for his or her bad health, think again.

You see, I'd inconvenienced the Dean of Curriculum and Instruction, a curmudgeon disliked by all the faculty. I'd pissed him off by going into heart failure just as the semester began, necessitating his replacing me for the semester. Somehow, I hadn't managed to dash off a request for a leave of absence before arriving in the ED in heart failure. How unprofessional of me.

Anyway, I got the official letter saying I'd failed to ask for that medical leave of absence in advance and was being asked for my resignation, or be terminated.  Of course, I didn't resign.  Why should I? One of my coworkers had suffered a massive stroke the same semester I was out for my adrenal problems, and he clearly would never teach again, but he remained on the roster until well after I was canned.

Oh, I tried to protest. I filed an appeal that failed, as nearly all first ones did, but I was eligible for two more appeals, and I was told by numerous persons, even one in the West Virginia Higher Education Council, that I would surely have my job reinstated. I overheard the WVU lawyers in the ladies' bathroom during a break in the hearing I did attend saying, "Wow, this really shows how bad the system is."

But guess what, sports fans?

I was sick.  Very sick.  Filing a bunch of paperwork and dealing with all the red tape of an appeals process was beyond my ability at the time.  I needed to heal, to recover.

All my life I'd been blessed by coworkers and others with whom I interacted on a daily basis who valued me.  When I left the DC law firm, one of my bosses pulled me aside and begged me to stay.  "You aren't like the rest," he told me.  "They're the worker bees. But you, you are someone special."

Not very special, apparently.

Losing my dream job happened seven years ago, and sometimes I still wake up and wonder how everything went to hell so fast and so completely beyond my control.

After a year of unemployment while I struggled with the hypersomnolence that has taken over my life today, I was rehired by the health education non-profit agency, where I again wrote millions of dollars of funded grant proposals.

But eventually my health problems interfered too much with the organization's structure--it got to the point when I could barely be awake during the day, only at night--and though I'd argue I can write better at 3 a.m. than most can any time of the business day--it's true I couldn't fully participate in the day-to-dayness of the job. Though I was working on several major projects at once and, I still believe, held my own, I could do that only by working on my own schedule, and that just wasn't cutting it anymore. I knew it was time to go, and my boss, who is a friend, thought so, too. I needed a long rest, actually.

And, fact is, I couldn't have kept teaching full time.  I couldn't keep working a full-time job.

My talents and abilities have been hijacked by my utter lack of energy, the result, I finally learned, of a neurodegenerative disease. I still don't know which neurodegenerative disease, but my neurologist said he'd diagnose me with MS except that I don't have lesions in my spinal column. I do, however, have lesions throughout my brain, along with many other symptoms of neurodegeneration that I've chronicled here. The latest is REM sleep behavior disorder, during which I act out uncharacteristically violent dreams, a common precursor to Parkinson's and other neuro diseases.

And so here I am, put out to pasture.

I try to stay busy.  I love to sew and embroider and read and write, and I do those things.  Once this god-awful winter is over, I will love being out in the yard and woods whenever I have the energy to do so.

I still believe I could teach one or two classes a semester. I just can't work full-time anymore. But I still have so much to give.

The reality of my situation, where I am today, hurts. I try not to dwell on it, but some days it's difficult to push away the nostalgia and the wonder about what might have been. I went from being at the peak of my professional life to unemployable in just a few years, and not because of anything I did to make that happen, other than get sick.

The psychic pain is the worst, but the practical side of it sucks as well. At long last, I enjoyed a comfortable salary for someone living in Appalachia for a couple of years, but in an even briefer period of time fell unceremoniously into poverty.

I now receive federal disability payments, thank god, but they are barely enough to keep the home where I still live with my adult disabled son. It's the only tangible thing I have to show for my struggle to attain professional success, which I did.

Even landing my dream job.  And losing it, through no fault of my own.

I tell this tale to let the world know that those of us in the 47 percent are not all here because we are lay-abouts and losers. In fact, I'd venture that few of us are.

In fact, you could find yourself right here where I am in the blink of an eye, no matter how successful you now consider yourself.

You know the old saying, "There, but for the grace of God ...."

Oh, I still live in the grace of God, if God exists. I have nothing, truly, to complain about. I've never worried, really, about being hungry or bombed out of my home. I still have all the blessings of my birth, even if the outward acknowledgement of those blessings is not so obvious. I am not bitter, and I am not done.

I write simply to remind us all of how easy losing what we have can be, and to keep gratitude at the forefront of our lives. And, yes, to tell my story. Because I can still do that.

I can still write.


Epilogue:  The very same night I posted this episode (tonight, in fact, or this morning, given that it's almost 2:45 a.m.), my former boss at the non-profit asked if I'd be willing to look over a project I could possibly do on contract.  So here's another reason for this episode, and it goes out to others who are suffering from chronic illnesses that nipped their promising careers in the bud:  Don't give up.  It's hard; it's very, very hard, but don't ever give up. We are sick, but we are not without talents and abilities that can find their places in this world. We are sick, but we aren't done.

Episode 52: Down the Rabbit Hole: Will I Finally Get a Diagnosis for My Breathing Difficulties?

Worshipping air again, tonight. Holy, sacred, life-bestowing air. Never take it for granted. Yes, I've written on this very topic with some of the very same evidence before, but lack of air tends to become an all-pervasive problem. Air, sports fans, is kind of important.

Photo by Lisa Sheirer
Used with permission

Today I had a horrendous deep, barking coughing fit after I laughed real hard at something Honey said, and I've been coughing and barking since.

I'm wondering now whether this might be the clue that finally makes my pulmonologist believe me when I say how quickly I run out of breath when merely taking a walk or walking up a flight of stairs.

As I've said again and again, this is the most frustrating part of being a patient. My pulmonologist doesn't believe me when I tell him about these symptoms.

Why do I think this?

First, he ordered a six-minute walk test. As the two of us walked, I told the technician that my oxygen saturation would probably be just fine when we stopped at the end of six minutes, but if we waited a minute or two, it would drop. I knew this based on my own observations about the effect of exercise on my ability to breathe.

"That's not how the test works," the tech told me. She measured my saturation just after the six minutes, and it registered 100 percent, and that was the end of it.  After that I sat down and clipped on my own oximeter, and within a couple of minutes, my saturation had dropped to 82 percent. But no one cared about that.

That's not how the test works.

Well, guess what? That's how my lungs DON'T work, and that's why I'm in that office spending medical dollars so I might have some kind of a chance for a life if this thing can be treated.

Fast forward to next visit. I again tell the doc about these symptoms.  Sports fans, these are the very first symptoms that started my recent fall down the rabbit hole of today's health care system. They became debilitating during a trip to Europe during Christmas 2012-New Year's 2013.  I had absolutely zero stamina on that trip for stairs, for walking, for doing anything at all.

It's now a full two years later, and while I've been diagnosed with quite a few things since them--cardiomyopathy, sleep apnea, idiopathic hypersomnolence, kidney disease, and degenerative brain/muscular disease--I think that's it--no one has yet explained this lack of oxygen on the slightest exertion. This isn't just fatigue, which would be expected given all my diagnoses.  This is a very specific reaction to exercise or, to be more accurate, exertion, since even brushing my hair can wear me out.

The first time it happened was well over a decade ago, when my sister and I tackled Mt. Baldy, a mountain in California near our aunt's retirement home.  We took a ski lift up most of the way and were supposed to then take an easy trek across the ridge to the apex at 10,000 feet. We had started at sea level, since we were close to the Pacific Ocean at the base of the mountain, so that's a pretty fast elevation change.

My sister is seven years older than I, and she was trucking along, but my body stopped itself flat and told me, "You ain't taking another step, Girlfriend."  I had to stop numerous times, and starting up again was pure hell.  I finally made it to the apex, but I knew what I'd experienced made no sense, given my then-young age and seemingly good health.

The problem now is that it's happening without shooting up to 10,000 feet in an hour or two.  I also have a history that includes coughing up blood resulting in a bronchitis diagnosis, a bout of pneumonia, and a diagnosis of reactive airway disease a few years ago. And, as I've said a thousand times, there's that damned polycythemia that still shows up in all my lab tests, and the most basic cause for that is a lack of oxygen in the system.

So, back to my trusty medical librarian skills--maybe this severe cough after laughing,which has been happening to me for some time now, will indicate the cause of the problem.

And I think, perhaps, I've found it:  exercise-induced bronchoconstriction. In other words, after exerting oneself, a patient with this problem has trouble breathing because the bronchial tubes, the same culprits in bronchitis, narrow to a potentially dangerous degree. The problem is common in asthma sufferers, but it can also occur in people without any history of asthma.

And laughter, it turns out, affects those bronchii the same way--it is considered a trigger as strong as exercise.

For more on this condition, read about it in this 2011 article from American Family Physician.

I just pray that when I see Dr. P, as I'll call him, this coming Wednesday, this new observation will make him take me seriously.  But I think I may have already told him about this symptom, as I told you, Dear Viewer, in an earlier blog.  I had a major coughing fit while watching a silly scene in an Ace Ventura flick, and that ended with my coughing up about a cup of phlegm. Dr. P. didn't seem to care about that, either. 

During my last appointment, I told Dr. P what had happened with the six-minute test, so he told me to get up and follow him.  He then had me walk up a short flight of stairs in his office building and clipped an oximeter on my finger. His tech again took the measurement and, as I could have told them, of course--no decrease in oxygen saturation.

Well, no duh!  The office building was as cold as ice, and I"ve noticed that heat makes the problem much, much worse. Not only that, I'd just gone to the office after a night on my CPAP--the appointment was first thing in the morning. My symptoms aren't constant, but they are frequent.  And they get worse as the day goes on. The more I do, the worse they get.  It's a cumulative thing.

I tried to explain that to Dr. P, who told me, "If it doesn't happen here in the office, it doesn't happen at all."

I understand doctors need objective evidence. But if a patient consistently complains about a symptom, doing one or two tests that reveal nothing should not be the end of it.  In reading about this condition, I learned that recommended tests include spirometry with and without exertion.  I've had it without exertion twice, but never have I been given that lung test with or after exertion.

And, one of the characteristics of exercise-induced bronchoconstriction is that it happens during or after exertion. So why does the protocol for a six-minute walking test have the oxygen saturation taken ONLY immediately after the end of the six minutes?  What about those of us whose oxygen depletes shortly after that?

"Typical symptoms of EIB include wheezing, shortness of breath, dyspnea, cough, or chest tightness during or after exercise. These symptoms usually occur during strenuous exercise and peak about five to 10 minutes after exercise," state Krafczyk and Asplund in the aforementioned article.

So why would a six-minute walking test NOT check for lack of oxygen for several minutes after the walking ends?

Honestly, I don't frickin' understand what a person has to do to get adequate diagnosis and treatment in this Rabbit Hole known as the U.S. Health Care System.

The cardiologist overseeing my last cardiac stress test told me my heart had performed just fine, "but something is going on with your oxygen." By the end of the test, I was hanging on for dear life; my legs felt as if they were going to give out from under me.

Legs can't run without air.

But nothing about my oxygen, or lack thereof, appeared on the doctor's report of the stress test because, of course, the test was all about my heart function. Well, hello, the two are utterly connected, so why is this?

Even my new physician, whom I'd had high hopes for, told me when I expressed this problem--and that fact that my own oximeter, which my ENT had told me to get when my oxygen was low in his office, drops into the 80th percentile on mild exertion:  "Maybe your oximeter is broken."

I want to scream.  I want to fricking scream.

Maybe there's nothing the doctors can do for my breathing problem, but the frustration of their not taking me seriously and not investigating the problem properly so they and I can know why this is happening to me is driving me absolutely crazy.

I had almost made up my mind that I wouldn't even bother mentioning this problem again this time. It's so discouraging to be made to feel as if I'm making the shit up. But now with this horrendous coughing, I have something else to bring to him. And he'd better take it seriously this time, or I might have to do something desperate. Like write an article and send it to the local paper about the frustration of my quest and the lack of care I'm getting. Don't want to do that. Just want my doctor to do what he's supposed to do.

Remember how excited I was when I was going to see the neuromuscular specialist at Hopkins, who I'd hoped would take my neuro symptoms seriously and give me a DNA test for myotonic dystrophy?  Remember how utterly disinterested and cold she was to me that day, and how disappointing that encounter ended up?

I fear that will happen again this Wednesday.  Going to the doctor shouldn't have to feel like you're about to enter into a battle, but that's exactly how it feels.

"Patients with atypical exertional complaints require careful clinical and physiologic evaluation," says American Journal of Respiratory and Critical Care Medicine authors McFadden and Zawadski.

So why haven't my complaints been carefully evaluated?

A couple of aspects of EID that don't exactly match my situation are that it normally occurs with strenuous exercise, and I haven't been able to do strenuous exercise for a long time. It also occurs tends to occur with "physically active" persons, notably athletes, and I haven't been physically active, much less an athlete, in quite a long time. I've had to give up hiking and bicycle riding. Hell, I've had to give up walking. I've had to give up evenings out with my friends. I've had to give up sex, on a far too frequent basis. I've given up showering and grooming most days. I've given up cooking for myself most days. Every frickin' thing I do exhausts me and leaves me out of breath.

Have I used the word "frickin'" enough times yet? Hey, I'm mad. I'm trying to keep it clean, though.

Certainly I was being physically active when climbing Mt. Baldy those 15 or so years ago. And I first noticed the severity of my symptoms while forced to be physically active during my trip to Europe in 2012, since I had to walk a lot and use stairs in buildings with no elevators. Now, my problems occur with the mildest of exertions, but perhaps that's because the condition has progressed (or regressed) to this debilitating state.

Another problem with the diagnosis is that cold air is known to induce an attack. I, on the other hand, find that hot weather brings on my breathing difficulties much more than cold weather does; however, I do not spend much time in cold weather and certainly don't exercise during cold weather, so I can't really say whether this would affect my breathing or not. The brief trip up the short flight of stairs in the air-conditioning at Dr. P's office wouldn't have induced anything because of the brevity of the test--it was a silly, non-test in my view.

Yes, I'd said that I get out of breath when climbing stairs, but I was talking about the steep, long flight of stairs in the Victorian-era building in which I'd worked at the time. The little flight of wide steps Dr. P tested me on was no comparison.

Krafczyk and Asplund also note that "Self-reported symptoms have been shown to be poor predictors of EIB because other conditions, such as vocal cord dysfunction, can cause similar symptoms. Therefore, symptoms alone should not be used to diagnose EIB."

Okay. I buy that. So give me the right damned test to figure out what the hell is going on--especially since the symptoms can be treated. I would dearly like to do a few things without having to give up in exhaustion because I can't breathe. I'm tired of waiting around for the doctors to believe me enough to give me the right tests.

Let's hope this time, this Wednesday's appointment, things go a little better, and answers are forthcoming. That's all I want. Frickin' answers. What else are my medical dollars paying for? It's like a bad student's being passed from grade to grade. I'm a patient being passed from appointment to appointment. Problem student, problem patient--What's the strategy? Give up on them! Teachers and doctors who do that don't deserve the salaries they draw, in my humble opinion.

I don't want to have to dread my doctor's appointment, but that's exactly what I feel. Dread. And yet I want those answers, so go I will, and do battle I will, if necessary. My quality of life, and my very life, depend on it.

Meanwhile, we just had a snowstorm, and it's bitter cold out. Maybe I'll do a little six-minute walk tomorrow and record the results with my oximeter, taking a photo of those results. Sounds like a good idea to me. But will Dr. P buy it, even then? Most likely he'll just think it's another example of my "obsession" with my health.

Damn straight, I'm obsessed. Anyone would be, if he or she could not breathe properly and could not do much of anything, anywhere, any time. It's miserable.

And I'm damned sick of it all--being sick and exhausted and out of breath and stuck in the U.S. health care system of today, the Rabbit Hole where nothing makes sense. The Rabbit Hole I find myself in today. The Rabbit Hole whose passageways are constricting, tightening, and burying me alive.

___________________

REFERENCES

Krafczyk, Michael A., and Chad A. Asplund. 2011. "Exercise-Induced Bronchoconstriction: Diagnosis and Management." American Family Physician 84(4):427-434.

Parsons, J.P., et al. 2012. "An Official American Thoracic Society Clinical Practice Guideline: Exercise-induced Bronchoconstriction." American Thoracic Society Documents: 1016-1027.

Episode 50: Down the Rabbit Hole and In the Third Stage of Grief?

Kubler-Ross's five stages of grief upon learning of one's imminent demise might also be relevant in acceptance of severe chronic disease.

I've gone through the first two, and will no doubt cycle back now and then:

1) Denial - That stage didn't last long for me. It was hard to argue with my symptoms, hard to deny that my body was failing me.

2) Anger - This, on the other hand, is still pretty fresh. I'm not so angry at the gods--I've been blessed in so many ways in my life, and why should I be immune to pain or "injustice," if that's what illness is, when others on this planet suffer so greatly?

I have often, however, been angry at the health care system and at individual health care providers for a variety of valid reasons, many of which have been described here on The Mary Dell Show.

And although I get upset when I start thinking about how a fragmented system has betrayed me, and how individual physicians and practices have made me feel marginalized, I'm moving beyond anger now.

Why get angry? That's just more energy to expend, when I have so little energy anymore at all.

And so I'm moving into that third stage, bargaining.

Episode 47: Hypersomnolence, OR Sleeping Too Damned Much, OR I Want My Life Back

I've mentioned hypersomnolence on the show many times, but what exactly does it mean?  How does hypersomnolence affect one's day-to-day life?

A typical day.

Of course, "hyper" means too much of something, and "somnolence" means sleepiness. And I have been dealing with this strange and debilitating condition for the past six-plus years. The official diagnosis is idiopathic hypersomnolence; "idiopathic" simply is medspeak for "We don't know why the hell it's happening." More frequently than not, it seems, idiopathies end up being caused by brain pathologies, and recent studies on this condition point toward the same.

Another term used is primary hypersomnolence; this means the problem is due to its own cute self and not something else going on in the body.

Another typical day.

Hypersomnolence can also occur due to other health conditions, such as cancer, in which case it's known as secondary hypersomnolence. Whatever is happening to me is slow-moving, and most cancers aren't, so I'm not overly concerned about that. As any faithful viewers know, I suspect I may have myotonic dystrophy and am waiting for my DNA results as we speak. This is a genetic neuromuscular condition, and one of its hallmarks is--you guessed it, sports fans, hypersomnolence. But whether or not I have myotonic dystrophy, there's no doubt (and I have scientific evidence, as described below) that I have, indeed, been blessed with hypersomnolence.  Lucky me.

And, yes, yet another typical day.

I've always tended toward sleepiness, particularly having trouble waking and getting out of bed in the mornings and, in recent years, the afternoons and even some evenings. Yet I managed to get going all through school and most of my work years, kicking and screaming all the way. I used to sleep in until 1 or 2 on the weekends and would feel a little guilty for it--but that was nothing compared to what I've experienced since 2006 or 7.

Episode 46: With Accolades and Self-Flaggelating Gratitude for the Most Eminent Human Doctor A, OR Thanks, Good Doctor, for the DNA Test

The title just about says it all. But, for the long version, read on:

This past Wednesday I saw Dr. A for my routine neurology checkup--this one, of course, the first after having met my nemesis in a bizarrely unhelpful neurologist at Johns Hopkins Neuromuscular Clinic, which actually made this local appointment slightly less than routine.

Yet I felt defeated before going in. What would be the point of trying to convince Dr. A that Dr. Red Queen (RQ) of Hopkins had not properly examined me or considered my medical history when she'd come up with her unequivocal veto of any possibility that I might actually have myotonic dystrophy?

If the woman had spoken to me with the slightest curiosity or compassion, I might have more easily accepted her assessment. Unfortunately, I maintain to this day that she subjected me to quite the opposite.

But this is not meant to rehash a story already told in a previous episode.

The issue at hand today had everything and nothing to do with Dr. RQ.

Trying to convince one doctor that another has treated you badly is akin to having to convince someone of your sanity.  Try it sometime.

However, I've have learned through long, hard experience that doctors are not infallible, beginning when I, at twenty years of age, disagreed with my eldest son's pediatrician who told me my firstborn, then about five months old and about whom fellow church members had expressed concern he might have hydrocephalus, was merely a "right-handed baby with a funny-looking head." That's exactly what he said--I realize now in a possibly unfortunate attempt to sound lighthearted and relieve my worry.

But I had reason to worry back then.  My insistence that my baby be seen at Children's Hospital National Medical Center revealed his skull was closing up prematurely and, if it weren't opened by a surgeon, would result in terrible brain damage--a condition called craniosynostosis. Oh, and he wasn't just "right handed"--he'd held his chubby little fist to his chest because his premature birth had resulted in a cerebral hemorrhage. His entire left side was partially paralyzed. And the reasons for all of the problems, I might add, are consistent with pregnancies in women with myotonic dystrophy.)

My point is this:

I don't always agree with a physician tells me, though if one were to mount a study on the many encounters I've had with doctors of many types and specialties one would conclude I've been a respectful and mostly cooperative patient. I'm just not willing to give up my right to think for myself.

Episode 44: How Can a 54-Year-Old Woman This Damned Sick Look This Damned Good?

Okay, I'm taking all of us on a little Mary Dell ego trip today.

Actually, I started this episode a year ago, when Honey also took the photo I'd planned to accompany it. I'm a year older but don't look much worse than I did then. I've moved the photo to the second page of this episode to save virgin eyes from seeing it if they don't want to. Hey, it's not pornographic--just a bit suggestive.

Yes, come with me .... hop on my magic carpet ride to a land where the marvelous science of photography (without any tricks such as PhotoShop) suggests that I may not be so darned hideous after all--certainly not too bad for a gal of my advanced (50+) years. You see, my entire life, I've always felt unattractive--or, at least, the core of me did. I could fake being attractive and convince men I was attractive, but I never felt it deep inside.

And now, ironically--how many ironies does chronic disease rack up? (pun intended)--Answer: A LOT--the attractiveness that others see is doing me a disservice (though I'm happy to have it regardless).

The fact that I don't look like a middle-aged, chronically ill woman means that many health professionals I see once or twice think I'm malingering or trying to get attention or some other stupid shit, and they don't take me seriously. For the latest egregious example of this phenomenon, see Episode 41 and my nightmare consultation with a neurologist at Johns Hopkins Medical Center.

The fact that I don't look like a middle-aged, chronically ill woman means that co-workers, friends, even my sister and one of my sons, neither of whom sees me nearly enough, have hinted at finding my complaints hypochondriac in nature. With my son, I'm thinking it's sort of denial--no one wants a sick mom. With my sister, I think it's just that I'm the youngest and can't possibly know what I'm talking about, ha.

But I love them both dearly, of course, no matter what. None of this is easy to take in, even as I experience it day by day.

Hopefully, given the latest neuromuscular diagnosis, signs, and symptoms, those who know me well no longer doubt me. One thing my mom pounded into my head during the 29 years I was blessed to have her in my life was honesty. And the last thing I want to do is waste medical dollars when so many others need care.

And this pic is TAME compared to all the sexting going on, so no big deal there, Mom!

No, I don't look sick.

In fact, I look damned good.

So how can a woman who looks this damned good really be this damned sick?

Episode 41: Down the Rabbit Hole and There are Nazis Down Here!

Readers of fiction will recognize the allusion to Watership Down in this episode's title. Watership Down, a popular book when I was in high school, is based on a completely absurd construct: A warren of bunny rabbits must fight to save its society from nasty Nazi rabbits. Believe it or not, it's a terrific read. It works. Which is more than I can say for the rabbit hole I currently find myself in.

In fact, this rabbit hole suffices as a metaphor for the utter irrationality in today's health care system. I've actually encountered Alice's Red Queen; I don't want to call her a Nazi, exactly. Or mix my allegories. Just couldn't resist the literary tie-in.

Okay, okay, enough with the figurative language.  Here's what happened, Dear Viewers, when I finally underwent the long-awaited neuromuscular examination for possible myotonic dystrophy at Johns Hopkins Medical Center. Now, to date, I've been more than pleased with my care at Hopkins, but this experience has likely destroyed my loyalty to said institution.

They'll be happy to be well rid of me anyway. Who am I but one patient, powerless against the juggernaut of Big Medicine, Inc.? One patient jacking up their costs (and their profits) with her smorgasbord of chronic disease. And now that I have Medicaid instead of Blue Cross Blue Shield, I'm doubly unimportant to the system created (but not maintained) to help me and you.

I'm a shareholder liability, that's all I am. "Let them die then, and decrease the surplus population!" Okay, okay, not yet another literary character entering this story, but I often quote Ebeneezer Scrooge at moments like this.

"Off with your head!" says Dr. Red Queen, in so many words. "And no DNA test for you--you've overstepped yourself so I don't care to relieve your mind with an easy yes-or-no answer to an at least somewhat possible reason for your years of suffering and confusion at the ways your health has failed you! So there!"

That's her reflex hammer in her hand, and she refuses to admit the medical sign it renders in her patient, lest her patient be right about something she has no business knowing about! Off with her head, and no DNA test for her . . . NEXT! I have a paycheck to collect and a lifestyle to protect and a reputation that trumps yours, so nyiehaya!

Despite this latest horrific experience (and there have been plenty more than this and the one with my son, believe it or not, in my tumble Down the Rabbit Hole), the Hopkins visit was not a complete waste.

The electromyography (EMG)--a rather uncomfortable test in which a doctor sticks needles into your muscles and records the electrical reactions--indeed revealed some myotonic abnormalities. Thus, although Dr. RQ, as I'll call her, refuses to consider my experience as valid, the machine doesn't lie. This is not over yet.

My true purpose in telling my story is that I want you, Dear Viewer, to understand how the medical system is against YOU, the patient, and how LITTLE YOU MATTER in any quest to learn what is wrong with you or a loved one. Obviously, this needs to change. 

The medical system exists to serve US--YOU and ME, the patients. We, the People. But as this diagnostic nightmare continues to demonstrate, we count very, very little in the stories of our own lives, if we believe what our doctors and other health professionals, insurers, and governments (federal, state, local) tell us. 

But we don't have to believe them. We know our bodies; we can read; we can think; we have friends and family who want to know what is wrong; we have only this one life to live, and we deserve to know what is wrong when there is something wrong. That's what the system is for, but the system too frequently fails us.

Episode 31 - On Trickle-Down Economics--Have you noticed the word "trick" starts the whole concept?

Before I get started, I want to thank my Uncle Freeman (marvelous name, isn't it?  So Scottish).  He was on duty in Hawaii on the day Pearl Harbor was struck.  Today is the anniversary of that day in infamy.  I am so grateful that Freeman lived, so grateful he was my uncle and his wife my aunt--beautiful, beautiful Ruth--so grateful he lived so he could father all three of the sons who would become my tall, handsome cousins when I entered the family.  Thank you, Freeman, and may you be round dancing and meeting all those ancestors you traced back to the 9th Century in heaven!

Now, back to the business of the day.

One of Reagan's two initiatives that have altered our world so drastically, leaving us in the midst of turmoil and fear and need (the other being the Reagan Doctrine--another episode):  Trickle-Down Economics. Have you noticed that the word "trick" starts the whole concept?

The idea was spoon fed to the American public by claiming that the method would grow jobs and make our economy stronger.

How?  It's simple!  Before TRICKle Down, everyone in the U.S. paid approximately the same rate in taxes--that is, other than the very poor who were given a break--something the gimmes resent so horribly even though that "break" doesn't even compare to the mega-rich's robbery legally sanctioned by this policy.

So, let's take the richest among us and give them a TAX BREAK!  If we do that, they will invest all that extra money into new ventures, new jobs, and new wealth for everyone!  Right?!

How dumb do you have to be to believe that?

Let's make the money earned on investments an exception from regular old income taxes for wages EARNED.  Let's tax investments at a mere 15 percent, rather than the 30-something they used to have to cough up like the working schmucks still do.  How hard is it to do that math?  Take away money from the public coffers, and not just any money, BIG MONEY, and it will miraculously re-appear when the masses have good-paying jobs.  Um.   I think the other half of that math equation has been zeroed out.  So where will the money come from?  That's right, sports fans, you and me, the working stiffs whose checks get smaller every year theirs get fatter.  Damned obese, actually.

Let's let the rich get richer on their investments--no work required to do that, just money, and they've got plenty of that, so let's just make it easier for them to make MORE money and cut their tax rates by more than half. There's a sucker born every minute, and a whole lot of them buy into this malarkey.

Because we ALL know that the rich have the best in mind for the rest of us.  They are always willing to share their wealth. (Ooooooooooooooooooh, that sounds Socialist; gives me the chills; god knows it's a far scarier thing for everyone to be entitled to a reasonable living than for all the money to be hoarded at the tippy top while the rest of us suffer.)

But wait?  With all that extra money we've given them, why are the Mega Rich sending all the jobs overseas? That's not what Ronnie promised!  Why are they closing factories and plants here in the U.S., the  place their money was supposed to trickle down to?  Why are they buying up small corporations that are barely making it, bankrupting them, and declaring bankruptcy so they don't have to pay anything back, and leaving the tab with the taxpayers?  And WHY THE HELL do half the citizens they are shoving this to keep believing their lies and buying into their crap?  Oh, wait, they can't buy into it--they don't have enough money left.  They just give their brains, hearts, and souls over to it and watch their assets dwindle.

TRICKLE DOWN?

The only things that have trickled down in this country since the Reagan era are the number of jobs in this nation,
drip
drip
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the amount of money in our bank accounts,
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the amount of money in our retirement funds, and, most of all,
drip
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our quality of life,
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our hopes for the future, our hopes for our children's future . . .

Episode 30: What's My Name? Mary Dell, MD (Medical Detective)

Here’s a call out to the then-Snoop Dogg (now "Lion," or was last I heard) for the use of his title—gotta love that tune! http://www.youtube.com/watch?v=wHKEJqMSiDg[Contains “obscene” language.  And while we’re discussing that, here’s a link to George Carlin’s “SevenDirty Words” to loosen you up.]

Okay, if your ears can't handle a little profane reality--here's what I'm really talking about today:  MYSTERY SOLVED, or at least a huge chunk of it, no thanks to the doctor/patient relationship I'm now negotiating with my much-loved primary care physician who, I fear, is burning out on me and on her practice in general.  And who can blame her?  Our health care system is so messed up today with everyone's running a patient's care OTHER than her own doctor--that's backasswards.  If I were a caring physician today, I'd be as burned out as she is.  I could just as easily have included this in my Down the Rabbit Hole series on the madness of today’s health care system as the story starts with more of that madness.  First, I will lay out the facts:

Episode 24: Down the Rabbit Hole aka the U.S. Health Care System

Should you find yourself on the cusp of death in these United States, be afraid.  Be very afraid.

Okay, so we’re all afraid on the cusp of death, so how about this:  Should you find yourself sick for any reason in these United States, be afraid.  Be very afraid.

I live close to the finest medical institutions on this planet, and I have arguably the best insurance company covering my care, so my care should be top-notch and should not end up bankrupting me, right?

Well, it was a different insurance company covering me when I did have to go bankrupt due to losing my job because I was ill—yes, I know that’s illegal, but you just try to fight it and see how useful that in—in my case, I gave up after one of three appeals because I was so darned sick, so exhausted, and my mind and abilities to do paperwork were not up to the task, and so I let it go.

Let it go.

Let everything go.

Because when you’re sick in the United States today, that’s likely what you’ll have to do.

The issues abound, and I intend to take each one on in future episodes, but for today I’ll focus on what I believe to be the underlying problem, the fundamental issue escalating costs and reducing coverage.

Episode 20: Down the Rabbit Hole OR On Being a Patient in Today's Health Care System

If you've ever read Alice's Adventures in Wonderland, you know that "Wonderland" is not a happy place to be.  Nothing makes sense there, and when Alice tries to get out of the underground warren she falls into, she is thwarted at every turn by absurdity.  Nothing is as expected; everything is illogical; nothing makes sense; frankly, the place is terrifying.

Just like today's health care system in these United States of America.

Now, I've had some good doctors, and I'm not here to doctor-bash.  Nearly all of the absurdities I've been subjected to have been thanks to the insurance companies--you know, the ones that are supposed to pay for services to make us healthier but, in fact, are money-making entities far more interested in lining the pockets of their CEOs and shareholders than in taking care of the sick who rely on them and who pay for their coverage. We are their customers, and if they didn't have a monopoly on the whole thing, they couldn't get away with what they do.  If we had a choice about how to pay the astronomical costs of taking care of ourselves--those skyrocketing costs ALSO thanks to those same filthy rich CEOs and soul-less company owners--we'd never shop at their "stores," ever.

But we can't vote with our feet.  We can't take our business down the street to get a better deal.  They've got us in their gnarly fingers and are pushing pins into our inert bodies while pocketing all the money in their bank accounts overseas--not even keeping our dollars right here in the good ol' USA.

Oh, well, hey.  That's what Obamacare is all about--breaking that monopoly.

Episode 12: Blood Sludge for Turkey Day

I’m still getting the hang of this polycythemia thing.

You see, my blood is too thick. Too many red blood cells. That makes my blood turn to sludge, and sludgy blood is not good. Not only does it put me at higher risk of heart attack, stroke, and pulmonary embolism, it makes me feel as if I’m full of sludgy blood, which means every cell in my body feels heavy and slow and, well, sludgy.

You’d think that feeling would be easy to recognize. The thing is, it’s insidious. I start feeling bad and, because I’ve had fatigue problems for the past few years, I just accept it, even as it gets worse than usual. And then I finally realize, “Oh, yeah, I’ve got that thick blood thing, too … maybe it’s time to get drained.”

Episode 11: Discouragement

Discouragement: the scourge of chronic disease.

I do my best not to wallow in it; I try to push it away when it comes crawling in, like a fog under the door. Even when I’m immersed in it, I hate it. I’m afraid of it. I worry that it’s right, and I’m wrong, and one day I’m just going to have to give in to its seduction.

Yet I’d be lying if I pretended it didn’t happen.

It’s not something I like to talk about. As bestselling author Laura Hillenbrand says about chronic disease, “I didn’t want to talk about it very much because I had the experience of being dismissed and ridiculed.” No one wants to hear a sob story, and persons with chronic disease can look perfectly healthy most of the time, so the inability to apply the stamina of most persons our age to our lives becomes suspect in others' eyes.  Better to only imagine people think you're faking, not to see it in their eyes.

Episode 7: Hypochondria and Bear's Head Teeth

After texting my twenty-eight-year-old son about my latest health issues, he texted back, “You’re a hypochondriac.”

I texted back, “I wish.”

Laura Hillenbrand, author of Seabiscuit and the more recent Unbroken, describes her battle with chronic fatigue syndrome in the New Yorker at http://www.cfids-cab.org/MESA/Hillenbrand.html.

I am eminently grateful that my health issues are not as debilitating as hers.

But there’s no question that I have morphed from a healthy, active person for more than half of her life to someone who is no longer at her best physically and, I’m afraid, quite often mentally as well.  I haven’t quite given up on the possibility of recuperating to the point of being as physically robust as others my age, and so far I’ve done a decent job adjusting to the need to write things down to remember them.  It’s the fatigue that is relentless.  I do still have good days, and I relish those.  I recognize them as they are happening … “Hey, I feel damned good right now.  I have some energy!  I can do some of the things I want to do!”

Unfortunately, in my ADHD fashion, I go in about seven different directions when I’m feeling well, so the overall gain is less than it should be.  Something that frustrates me even as it happens.

I’m not interested in hashing out the details of the latest diagnosis in my endless permutations of chronic disease, but just to give this episode some context, I’ll just say that the doc says I have “reactive airway disorder” or some such medspeak.  I’ve had a bad chest cough for the past five or six weeks.  It won’t go away, and it exhausts me.  Over this time, I’ve popped two “Z-Paks,” prepackaged week-long dosages of Azithromycin, a heavy-duty antibiotic, to no long-term avail, so my doctor just prescribed an inhaler, some Prednisone (a steroid that reduces inflammation and, by the way, made my mother psychotic when she took large doses to increase her white blood cells so she could take radiation treatments for her cancer), and another hardcore antibiotic. 

Episode 3: Polycythemia and Me

One of the original titles I thought of for my blog was "Anxiety and Me."  And while I still have plenty to say on that subject, polycythemia is my current obsession.

But ... before I start talking about what I've learned since being diagnosed with too many red blood cells, also known as high hematocrit and high hemoglobin, primary or secondary erythremia, primary or secondary polycythemia or polycythaemia, absolute or relative polycthemia, polycythemia vera or vera rubra, or myeloproliferative disease, or Gaisböck's syndrome, or just plain old plethora (actually, these aren't all interchangeable, and I'm not sure yet which one is my particular lottery ticket)--I feel compelled to consider a more philosophical question.

Is it wrong for a person who has been diagnosed with a malignant condition to talk about said condition?