Day: August 11, 2009

  • surviving health care

    Does anyone else out there ever base their lives around whether they might die this year?
    I'm a natural doom and gloomer.  To me, the ultimate optimism is expecting the worst, and when it doesn't happen, your day is going pretty good, even if stuff is still going wrong.  It's kept me pretty sane, don't seem to need anti-depressants or anything.
    I have a conundrum this year.  Since I experienced a nasty viral infection that hit my liver about 1 1/2 years ago, I'm highly med-intolerant.  I'm not able to treat for lupus and fibro and use pharma pain management because of this.  I'm subject to infections because my immune system loves getting hyper on me, and my lungs are already scarred up from years of low grade fevers and inflammation in my tissues inside my chest wall.  My conundrum?  The swine flu is coming...
    I had to make a new plan when my liver got sick and changed everything.  I HAVE to eat healthy, get lots of rest, and stay as far away from extra germs and stress as possible.  I'm a good person and try really hard to stay as productive as possible, but necessarily have to recluse myself from society quite a bit.  I'm learning to live with that, being left behind while others have fun and enjoy traveling and holidays and stuff.  I'm learning to deal with the bad feelings of jealousy and self pity and turning them into new ways to do nice things for others.  I love to cook, and this summer I made a big load of peach jam to hand out.  I cook meals for older in-laws.  I send surprises in the mail to people.  Get lots of books from the library, keeping my mind busy.  Hang out with my 'girls' (chickens) and do my own little studies on their behaviors and egg production.  It's a fun hobby.  Sometimes I work on articles to share what I've learned.
    But in the back of my mind, every single day, is the thought that this might be my last year.  This might be the year that my kidneys crash, or my lungs fail during a combo of illness and lupus flare.  This might be the year that I go into some kind of unstoppable catastrophic failure that medications can't fix.
    How can a person live like this?  When I try to discuss this with people who don't live with illness, they get upset and tell me all kinds of things about 'hanging in there' and 'don't be so down' and 'think healthy'.  It won't matter how much pain I might be in or how much difficulty I might be having on any particular day, just bringing it up is very upsetting to others.
    I know other people who live like me.  Some people are born with cystic fibrosis and live like this their whole lives.  Some people live with lupus for decades.  Some people get much more devastating illnesses, some have no idea they are sick and find out they have 3 months to live.  And some people simply destroy themselves severely neglecting their health.
    There is a lot of debate going on about health care reform right now.  I've heard nightmare stories from every conceivable angle when it comes to people winding up in hospitals, and it had nothing to do with insurance or a lack thereof.  Just last week a young man (20) went to a local hospital with chest pain, had all the tests and was told he was fine and to go home, and two days later he was dead, and AFTER the death they concluded it was pneumonia.  He didn't have a health challenge, and it had nothing to do with the swine flu.  We have a local chest bug going on around here, and everyone is being tested for H1N1 with it, coming back negative, but still making people VERY sick.
    If universal health care goes through, I will be one of the people at the top of the list to 'weed out'.  Nature is already weeding me out, I can't even take advils (or anything related) any more without instant fever and kidney response.  I could live another ten or twenty years trying to be as useful as possible to the people around me, but not if getting health care becomes even ~more~ difficult than it is now.  I've heard pros and cons, I've lived through medicaid controlled health care in the past (I was so restricted back then that a doctor smuggled 5 months worth of drug samples to me that medicaid refused to cover, most likely saved my life because I was so very ill at the time), and I have 'awesome' *ahem* insurance now.  But the key is managing one's own health care.  It doesn't just magically happen.  You could get a great doctor who is stuck in a dinky little clinic with crappy staff and very little to offer in the way of radiology and lab.  You could be in the biggest clinic in town with all the latest toys and get a doctor who gives you five minutes of negligence.  I've * seen * it * all.  I've had to work very hard to not only keep doctors coordinated, but to keep test and blood work orders from being mangled up along the way.  I've been lost in the system, took 3 years to dig up records over 10 years old when insurance changed, so many FACTS are lost that I can no longer prove I broke my foot over ten years ago, for instance.
    Cancer treatment in the United States is phenomenal, if you are willing to make the sacrifices to get to special treatment CENTERS.  We have some pretty dang impressive cardiology clinics.  Been in one, had heart surgery.  But these things don't magically happen just because you 1) walk into a doctor's office 2) with private insurance.  In short, I know plenty of people who have died already ~because~ they don't know the ropes in the health care system.
    THAT IS THE KEY.  Knowing the ropes.  It takes a lot of time to learn the ropes.  Long term patient care can be a nightmare in this country, depending on how well you monitor and manage the health care you are offered, how much you insist on more when it doesn't seem like you're being responded to sufficiently, how much you neglected your own health in the first place...
    Some of us wake up and face our deaths every day.  It's not all about the elderly being denied hip replacements and pace makers.  It's also about millions of people who live with chronic illness and need continual monitoring and maintenance to stay out of the hospital.
    I'm going to ask a question.  If the FDA and universal health care suddenly took all your OTC cold medications off the shelves and told you that you just had to live with your colds (which are self-limiting and you get over anyway), would you be upset?  Everyone knows how miserable a cold can be.  Imagine being told you can't take something to relieve your congestion and sinus headache, your sore throat and raspy cough.
    Now imagine that sometime in your life you will inevitably, sooner or later, be much more ill than simply having a cold.  Imagine that you have to argue your way into an appointment after a trip to urgent care because a specialist requires a referral, and you can't get an appointment with your regular doctor for at least 3 weeks, and no one is returning your calls.  In the meantime, you are having incredible pain breathing because the lining around your lungs is inflamed (but your lungs are clear), and all it takes is one week on a corticosteroid to keep you out of a hospital, which would cost you at least several hundred dollars (or even a thousand) AFTER insurance pays on your ER visit.  One $15 prescription, and it takes 3 doctors, 2 x-rays, and 3 clinics (and $90 in copays) to get it...  And that's before universal health care even gets here.
    That is NORMAL.  There are already people in the United States who spend weeks and even months pushing to get diagnosed and treated.  It took a year and a half and 3 doctors before I was FINALLY tested for lupus, and it came back positive.  I lost 75 pounds over 9 months, carried a low grade fever the entire time, but because I was on medicaid at the time (divorced parent in college), I was DENIED health care.  Until a doctor smuggled me in and then smuggled drugs to me.  I can't imagine government-run universal health care making that nightmare any better.  Isn't that what medicaid already is?
    I've already been through this.  I'm not afraid of universal health care.  I've been expecting to die for 2 decades.  What I AM afraid of is getting the swine flu because people are stupid and show up to work or go shopping when they have high fevers.  Yes, they do, you know they do.  I ~know~ people who live carefree happy lives and run out of everything in their cupboards, then when they get sick they panic and have to go shopping for pepto or advil or even just basic food to get them through a couple of days of hanging close to the bathroom.  These same people are not avid hand washers and don't carry hand sanitizers with them.  These same people wipe their noses on their hands, and then touch stuff on shelves and set them back.  They don't care that some germs can live up to 7 days in a dormant state on surfaces, easily picked up by others.
    When you reach a point where you are sick ~all the time~ and never get better, you get really tired of this.  If every time you go to a holiday dinner or go to the mall you wind up sick for a week, you start paying attention.  You get to the point where you don't think it's cute or funny when your friends show up at your door whining about being sick and wanting to hang out and get sympathy for it.  You reach a point where you barricade your life and stock up your entire house for two months of quarantine in the event some kind of nasty bug sweeps the schools and churches and work places and you don't dare go out, because you know you could wind up in a hospital.  Like that 20-year-old guy.  Actually, he was sent home.  He died.
    You don't see people like me out and about very much.  I worked for years with people who think that violently throwing up every week is 'normal'.  They think snotty noses and hacking coughs and gut wrenching trips to the bathroom are inevitable, and don't give a second thought to how many people they infect in passing.  And for many people this probably isn't a problem, unless you get disgusted with constantly having to deal with bodily fluids spewing from all angles and all the misery it causes.
    Sorry, that was gross.  But you get the picture.
    Anyway, just wondering if other people out there are thinking about the fact that this could be it.  This could be the year that a lot of people just die.  Maybe people we know.  Maybe us.  I see people drive around with support ribbons on their cars.  I see ads on tv about breast cancer and mesothelioma and motorized chairs that you don't have to pay a penny out of pocket for, and I wonder if this is the year it's going to hit much closer to home than that.  Like, maybe all it's going to take is a new virus to sweep through weeding ALL  of us out.  Before universal health care even gets here.
    I think we all need to slow down a bit and take stock of who we are, why we are, and what the debate is all about.  I have no idea, given that our country has millions of people and we have so much science and technology, whether one plan will work better than another.  But I do know that, as individuals, we've ALL got to be smart, and not just wait for other people to make the decisions for us.  If you WANT good health, you will do what it takes to HAVE good health.
    Confession-- before I got sick with lupus, I was a smoker and enjoyed a fair amount of alcohol.  I engaged in extreme dieting.  I loved Coca-Cola and rarely ate vegetables.  I ran my body into the ground between work and college and being a mom.  I was Super Woman.  And I nearly died when the lupus hit me.  It was very painful, and took months of drugs to stabilize me, took years to bring the SED rates down.  If I had been in better health to BEGIN WITH, I might not have gotten so sick or taken so long to recover and heal.  I have a lot of damage in my body that will never get better.
    My advice?  Live like this could be your last year if you don't change things.  Every day when you get up, think that this is the year you could die from something as simple and stupid as a virus.  It happens to other people, it can happen to you, too.  Take an inventory of all the things you do that make it harder for your body to function well.  Ask yourself if you really want to rack up tens of thousands of dollars in unforeseen emergency health care costs.
    Because it's YOUR choice, no matter what kind of health care policies are coming down the road.  Be proactive NOW, and take a good look at what the debate is all about.
    A final word on private insurance.  I love it, but ONLY because it saved me from government health care.  Private insurance doesn't fix everything.  You have to be smart about that, too.  For all the illness I've been through, I've taken the biggest financial hit because I was willing to pay cash when insurance wouldn't approve tests and treatment.  I sometimes feel like my insurance is a scam because we pour so much money into it, and it seems like I see diminishing returns when they only pay out $1000 for alt preventative care like chiropractor, but are willing to pay tens of thousands on spinal surgeries and resulting months of physical therapy.  But that's the wrong way to look at insurance.  Insurance is a safety net, that's all.  They make no big promises.  In the end, you've still gotta make the decision over whether you're willing to pay out the cash for the health care you want instead of shopping at the mall or upgrading your car.
    And for those who don't have the cash, I've been there, yes, it sux.  I was so very lucky to find a doctor who cared enough to get around the system and save my life.  I may not like everything about big pharmacy, but those hundreds of dollars' worth of free samples saved my life.  There IS a way around the system.  I know a woman who was smuggled into chemo through a back door after hours by a doctor who didn't want her death on his conscience.  I know we don't all get that lucky, but at least there are still good people out there fighting for the right to heal people.
    Please don't let the government kill that spirit.  The health care part is easy.  The having to explain everything on piles of paperwork is what's hard.  All those rules and regs.  Find ways around them.  Keep searching for ways around them.  But don't think for one second that someone making up more rules and regs can fix the mess.  The freedom to practice medicine is what is being eradicated in our country, eroding slowly over time through big pharma, big insurance, big govt.
    Be smart.  This could be your last year.

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