Archives for posts with tag: Medical Nightmare

I was sick for three months.

Ok, so maybe it was more like 2.75. But whatever. I’m a writer. Sometimes writers fudge and expand the details to enhance the story.

At any rate, at the exact time that I had FINALLY been given some time to do that THING that has most called to me for almost my entire life is the time when sickness fell and wiped me out. For, like, that last three months.

For years I’d been a busy, professional and rather successful career woman. I had the titles, the salary, the friends (but not the car… a part of me has always eschewed totally following the cliché). But last year, something snapped. A bit of frustration, plus a workaholic schedule, plus the growing realization that my life was perfectly poised to go DO this thing – for once – naturally made me want to shake it all up.
Full confession: I am approaching the official mid-life mark, and now that it’s nearly here and I’ve made the jump, I can no longer deny that perhaps the big 4-0 had more to do with this new life than I’d previously wanted to admit.

I am, admittedly in this telling, glossing over all the gory details: suffice it to say, on Dec. 1, I quit the job and headed out to follow my dream = to write that book I’ve wanted to do for years.

I’d developed an agreement with myself that I could have six gloriously free months to research and write the book. I’d do a two-week trip to Key West in December for all the research to be done. By January, I’d have it outlined. By February I’d be done with Chapter 2. By May my first draft would be done.

Given that planning it out in my professional career before had usually, mostly, WORKED, I had no reason to think this would go any differently.

Dude, Dudette. DogGod... whatever works for your "higher power"

Dude, Dudette. DogGod… whatever works for your “higher power”

But the dude (or dudette or DogGod or Pluto- whatever you need you believe. Just make sure you read What Questions a Dog would Ask God) upstairs has one heck of a sense of humor. As so often happens when things are set up PERFECTLY, the plan hit the bottom of the ravine all too quickly. My dream of spending day after day writing, editing, researching – thoroughly embedded in the work of my story — slowly slipped away as, week after week, I either caught an infection or had some new symptom develop that essentially wiped out my ability to do much of anything useful.

It started in the middle of Paradise on my maiden voyage, just two weeks into this grand new life. I was struck: a bacterial infection that sent my insides scrambling and left me with a prescription for two heavy-duty antibiotics. I avoided the hospital this time, but not without suffering through a few weeks of side effects. Then, at the tail end of that debacle came the flu. Happy New Year. Followed by a cold. Then another. Then a virus that refused to go away. Then another cold. Ad nauseam, for two months. As if that wasn’t enough, in January my hands pretty much stopped working, and I couldn’t actually perform the function of writing for any longer than 10 minutes.

I was a pirate in paradise when it all went down...

I was a pirate in paradise when it all went down…

For a newly-minted, newly-proclaimed writer, this loss of use of hands was the cruelest. It sent me howling into my journal (a new daily practice I mostly do, seeming only apropos that if I’m to be a writer I should write something each day, even if it’s only dribbling thoughts). I read back through those entries the other day and admit, here, fully – It was entirely whining. Like with a capital W. In retrospect, some WINE might have helped that situation- but I don’t do that anymore (another story).

It didn’t help that each time I’d have a day or two of feeling better, of being nearly normal, and then I’d feel some signal of the start of yet another virus. My Whining reached fevered pitch, along with my visits to various doctors and specialists. I may have even shook  my fists in the air at God- which at the least did make me, and the hubster, laugh.

 While I am back to pre-December production, energy level and doing-ness, it turns out there are in fact reasons this has all been happening – an immune dysfunction that doctors usually treat only when the patient is symptomatic and/or under duress. And I am fast hurtling towards a Fibromyalgia diagnosis, which is where they put you when you have all these THINGS, but no known underlying already-defined disease. Never mind that I don’t have either one of the main hallmark of the disorder (all-over pain). Truth is, this isn’t the first time: Like many in my situation, I started having bouts of this after a 3-month virus in 2008, and in the past few years it has gotten worse. Last year I spent most of my time going to work and when I wasn’t doing that, sleeping. The on-and-off elevated pulse, the fingers and toes losing circulation, the extreme fatigue, and tingling hands were, my doctor told me, all due to stress. Blood tests backed this up. OK, so great, simple solution: quit said stressful job. So when it got WORSE at the beginning of this year, rather than better…. well hopefully you can empathize with why I was so flummoxed. Beside myself. OK: Angry. I was very angry and pitiful.

But like all things, it eventually wound down, the sickness and the Whining.

Because in the midst this storm that was sleeping, eating, feeling awful, battling medicinal side effects, not being able to comprehend the words I was reading let alone make NEW thoughts out of them, I remembered one very important thing: I was a pirate once.

topsail schooner wolf

Schooner Wolf

Albeit, I was a nice pirate, the kind that you run into on sailboats in very nice touristy places—but still, even there the pirate spirit exists. You take the girl off the ship, but you can’t take the pirate out of the girl. You can’t take away the rebellion, you can’t remove the desire to freedom, and you can’t get away from the pirate’s indomitable spirit to PROSPER against even the mightiest of uncontrollable forces. In fact, it is those very howling forces of fate that call a pirate to most BE. It is this spirit, after all, that attracts so many people to the idea of pirates – this the reason the Pirates of the Caribbean franchise has done so well, that pirate festivals around the US have flourished (and been established even inland, like Kansas).

Yes, somewhere around about late January I got angry, full of fight. Somewhere around mid-February, I gave up. Perhaps not UP as much as IN: to the irrefutable truth that life so often seems to want to teach us: that despite the best-laid plans, you cannot control the actual outcome of the situation. My pirate self started, essentially, to howl into the wind. And now that the storm has abated (today marks one week entirely symptom free, two weeks since I could function normally again), I am beginning to do what so many REAL pirates before me have done when faced with a journey thwarted, a ship sunk: to begin again.

This marks the launch of a serial blog, one that will pull on bits and pieces from the book I am working on, will explore what makes a pirate, why we love pirates, and what it all has to do with business – and life. I know three people who will read it. And I’m happy with that. It’s practice, and it will remind me that I am a pirate at heart, as so many of us really, truly are. It all comes from my time aboard the Schooner Wolf, Key West’s official pirate flagship –often stories that don’t fit in the official book. The one time that knife-wielding customer boarded the evening sunset sail, for instance. Stories abound on a pirate ship. And I am just beginning to capture them.

Or, Why The New Healthcare Law is a BOON, Even if So Many Americans and Politicians Don’t Realize It

If this day – Oct. 1, 2013, when all Americans can now get health coverage regardless of age, income and pre-existing medical conditions — had happened a year ago, my entire last year would have been different. More importantly, my Mom’s last year of medical oddities and fights and hard choices would have happened differently, and her future would look different indeed. If you’re already insured and won’t be affected  by the new health care exchanges, it’s easy to think this new Healthcare law is affecting only the poor, or only a few:  Many politicians would tell you this new law means that it’s the many American’s funding easy solutions for the poor and undeserving. I am here to tell you there are millions of Americans out there who were facing hard choices and health crises, many families who until today had to deal each day with an unending cycle of stress and sub-par medical care for serious conditions.

This past year my family navigated a medical crisis with my Mom: Underinsured by no choice of her own, she couldn’t get affordable regular coverage thanks to pre-existing conditions. $1100 dollars a month with a $5,000 deductible making less than $30k a year is not affordable to middle-class Americans, and that was her only option to get regular coverage — and it would  have excluded the existing medical conditions she needed care for, anyway. Mom opted instead for major medical coverage: Get admitted to the hospital, it’s covered up to 80%. But all outpatient care was her responsibility. It’s a cross-your-fingers approach, but when my mother made the decision 10 years ago, it was either that or run out of financial resources very shortly. Of course, that meant my Mom was judicious with her health care: She did her yearly check-ups, dentist appointments and needed trips for illnesses that wouldn’t go away. She took care of her health, and paid for it out of pocket without complaining. But then that one health crisis hit that took it all out of her hands.

The Mom, before her medical challenges sent her on a different path

The Mom, before her medical challenges sent her on a different path

It started with a tooth extraction in November, 2012: the open socket never healed. After four months and a few rounds of antibiotics, her dentist finally sent her to a maxillofacial surgeon to figure out what was really going on. Turns out my Mom’s prescription of Fosomax — intended to head off the dangers of osteoporosis — had led to a condition called bisphosonate-related osteonecrosis of the jaw (BONJ). Her jaw bone was dying, bit by bit, thanks to the side effects of how Fosomax works (the maker of the drug, by the way, has yet to admit this is a major issue for many of the mostly women taking the drug — that tooth extractions and dental surgery that impacts the bone can lead to the bone dying. Our family now recommends turning to supplements like Stronium to counter the effects of osteoporosis). The surgeon would remove bone pieces that had died and were slowly working their way out of the still-open sore in her mouth.

Sometime in April, she started having bouts of unexplained swelling on the opposite side of her jaw: I’ll sum up the ensuring odyssey as quickly as I can: Each time, she’d head to her general practitioner, who would usually prescribe MORE antibiotics. Sometimes these antibiotics worked, though often only for a time. She ended up in the ER a few times from uncontrolled pain, extremely high blood pressure (often the result of prescription medicines interacting or fluctuating). She visited the surgeon, her GP, and even an ENT specialist a few times, and an oral pathologist — all had different diagnosis, despite blood work and a disease pathology that pointed to an ongoing infection (and thus the swelling, and pain). At one point, thanks to a stronger antibiotic and its side effects, she ended up admitted to the hospital to treat the nausea, vomiting and low potassium and sodium levels caused by the side effects. We TRIED to get her put on IV antibiotics that week, something her GP knew was needed to treat what was clearly showing up as an infection, but to no avail: the ER doc wanted to “talk to an infectious disease specialist” first. Either he never did, or he just never followed up: we never heard from him after his weekend on duty and were unable to contact him through the hospital.

She was discharged. Her Maxillofacial Surgeon had been on vacation that week, and she returned to him when the swelling occurred again just a few weeks later. He did a 3-D bone scan, which showed ongoing bone structure changes along her entire bottom jaw, and he performed two biopsies seeking a diagnosis. My brother and I were now deeply imbedded in her care — we wanted to be, but we also needed to be: my Mom was on so many pain medications and a muscle relaxer and so worn  out from losing nearly 20 pounds in two months and fighting an infection that just couldn’t go away, that she needed help remembering and tracking everything. And so, after nearly THREE MONTHS of visiting countless specialists searching for an answer, and numerous tests, all paid for by my Mom out of pocket, he recommended the one thing we’d wanted from the get go: that she visit an infectious disease specialist for what was likely an ongoing bone infection in her lower right jaw.

Are you catching this? It is what her GP had suspected from the first time the swelling occurred in April: an infection on her left side, opposite the bone necrosis. It took countless doctors visits to get that one referral we’d needed from the get go. If she’d had insurance, if she hadn’t been self pay, would this have come sooner? I can’t help but think so, given my own experiences of the insured healthcare dance I have done in the past decade. It has never been hard for me, the insured, to get a referral.

And here’s the rub: My Mom qualifies for Medicare, finally, in November, her birthday month. The recommended course of treatment for the jaw infection is daily antibiotic IV infusions in a doctor’s office. This treatment for the uninsured costs upward of $20,000 by the time you pay for the antibiotics, pic line and nursing care. Treatment at home wasn’t even an option: we couldn’t find a home health care nursing provider that would provide a nurse for the treatment to a self-pay patient.

And so, even today, my Mom waits. The infection is, for now, held in check with a low-dose on long-term antibiotics. Of course, this opens the door to ensuring that whatever microbe is causing the infection will become quite resistant to that antibiotic, and possibly others. Ultimately when she DOES receive treatment, it will be with an entirely different class of drug, a much more powerful antibiotic. Until then, we wait with baited breath, hoping this course holds it all in check.

And meanwhile, the costs — not just the financial costs — are high.

  • The time she lost in productivity from countless doctors visits, spending months in ill health, and not being able to plan for her future — financially or mentally. My Mom doesn’t work anymore for an employer, but she provides care and help to my brother and his family who live nearby, and she creates and sells stained glass for the local community. She also bolsters her relationships with friends and other family, the all-important community building that we rely on as humans. This all fell by the wayside.
  • Time her family lost in productivity from worry, research and doctor’s visits. Thank goodness I have a wonderful employer who let me use sick leave to head back home and take care of her for the week when she was on heavy drugs and ended up in the hospital. And thank goodness my brother is a firefighter who has two days off for every one he works, and could arrange her appointments so he could take her. He and I both spent many hours calling the various doctors and exploring various options for her treatment. My mom and her swollen jaw was my vocation for an entire week, and I was exhausted at the end of it. Imagine how she must have felt. Imagine what others with ongoing serious conditions, like cancer, must face.
  • Time wasted with all the various ENTs, and pathologists, surgeon and GP visits we made, when the entire time, all she needed was one referral to an infectious disease specialist. In case you are thinking, “Well, why not just call and  make an appointment at one?” : You can’t. Infectious disease specialists require a referral, one her GP could not give her. It had to come from her surgeon, who first had to prove to himself that what she had was NOT cancer. Would this have come sooner if she was insured? I have to think so – it’s never been hard for me, the insured, to get a referral.
  • A total change in our family’s financial future. The very real dollar costs of this past nearly a year has drained my mother’s savings, run up her credit cards and totally changed how long she has to go on her retirement. My stepfather died 8 years ago, and their retirement account meant she could live a comfortable middle-class existence for at least the majority of her retirement age. No longer. My Mom has now had to consider that sometime in the near future she will have to sell the house that she loves, potentially, and end up — where? Renting? Not exactly creating the solid financial future that she and my stepfather worked for during their entire working lives, shoving away all those extra pennies into their retirement account. And, as her children, it’s not like we’ll just let her land where she may, in some sub-par retirement home, especially when she is perfectly capable and functional. So, my brother and I are coming to terms with entering the “sandwich generation” at least a decade (if not more) sooner than we expected, taking care of both children and parent. I, myself, am only just starting my family- My fiancé and I will be taking care of young children at the same time we help safeguard my Mom’s wellbeing. I know many families face this all the time for even greater health crises: Consider the greater social toll this creates for ALL Americans, when extra family resources go towards parent care. We want an economic recovery in the US? Not under this model.

I know that  my Mom and our family is not the only one to face all these costs — and more I  have not even detailed here–  while we waited for the American health system to right itself, as it finally did today, Oct. 1, 2013.

Everyone fighting this change — and it’s hard to tell anymore if it’s Americans or just politicians and their rhetoric — just haven’t realized how many people and families were truly facing these hard decisions in the past decade. My Mom is not the only one – Indeed, her story is minor compared to millions of other Americans who didn’t even have the financial resources to visit doctors under a self-pay model. Free health clinics can only provide so much: And you can only stay in the hospital (whose bills, ultimately, you can pay under a payment plan) so long before they kick you out. How many families have lost a loved one prematurely, simply because they did not have the financial means for treatment? How many families went from middle class to poor because they consistently chose health? Talk about creating a great disparity between rich and poor: Nothing in our system has the potential to create a stratified “Have” and “Have Not” society than the way our medical system had increasingly made it hard for those without insurance to receive care and still retain the ability to provide shelter and food. Nothing was as potentially destabilizing in these times of economic turmoil than a system which supported a widening gap between two sectors of our society.

Maybe the current structure of our new healthcare system isn’t quite “it” — but neither was the old one. Republicans can fight all they want against “Obamacare” (which I refuse to call our new healthcare system — that’s a political term that the media picked up from politicians… lemmings, we all are, to continue using that term), but change was needed. If this current system isn’t it – FINE. Then create one that DOES work. But stop hijacking the American public to get re-elected. Fix what we have, rather than fight against what has already happened.

If we were a true democratic republic, that’s what our Congress would turn its attention to.

Now, if you’ll excuse me, this pirate has some very real health insurance research to help her Mother with. Life, after all, sails on.