Daily Kos

Today I am a Healthcare Voter: a personal rant

Thu Aug 30, 2007 at 04:33:21 PM PDT

In case anyone is unaware, I want to state for the record that I worked for the Laesch for Congress campaign in ’06, I work for it now, I will work for it in future.  But this diary is a personal story, not vetted by the campaign, although also an explanation of why, in fact, I started working for the election of John Laesch as my congressperson in the first place, why I’m probably going to drop in an ActBlue link in the end anyway, as well as why I am, oh, pissed off at the world today.  Again.

Today Kate’s life is in danger.  Again.

Kate is my late-twenty-something youngest daughter.  She is herself the mother of two, my only grandchildren.  Kate is smart, witty, charming, creative, funny, willful, stubborn, disorganized, proud, courageous, kind, and a free-spirit if ever there was one.  I mention these things because, like most people with a chronic illness, she hates being defined by it so I don’t want it to be the only thing I say about her here, but Kate has Type I Diabetes.

The onset in her early twenties was sudden and complete.  She thirsted.  She became irrational.  She ended up in the emergency room, where her blood sugar was found to be dangerously over 900.  She was five feet tall, 100 lbs, physically fit, a disorganized free-spirit suddenly and genetically doomed to coping with a disease that requires enormous amounts of discipline to control, because let’s be really crystal clear about this: there is no cure.

Because there is no cure, Kate’s future almost certainly holds: gangrene, multiple amputations, blindness, kidney failure, heart disease, and early death.

Except, maybe...there is hope, there is embryonic stem cell research.

Coincidentally, right about the time Kate was sitting in the emergency room with a blood sugar over 900 being diagnosed with Type I Diabetes, Dennis Hastert, our Congressperson, was becoming Speaker of the House.  I remember this mainly because I was working in downtown Batavia, the site of Denny’s congressional office, and was pretty much working and living in a fog at the time due to the distraction of Kate’s health crisis, when it dawned on me to wonder why Peter Jennings was outside the local diner with a camera crew.

"Denny is Speaker of the House," I think someone told me.  

"Denny Hastert?" I think I responded.  "Are you sure?"

But incredible as it seemed, so it was.  Not long after that, I, having placed myself on the American Diabetes Association e-mail list was asked to contact my Congressperson and request their support for a bill freeing up funds for embryonic stem cell research that Bush had restricted.  "Promising hope for a cure," seemed way better than amputations, blindness, kidney failure and early death.

So, though I hadn’t voted for the guy and didn’t intend to, it seemed worth a shot.  Had I been more aware of what was going on at the time, I would have realized my particular congressperson was not only not one of the Republicans who had, surprisingly, broken with the pack to support this measure, but was in fact 100% in tune with Bush, voting with him 100% of the time, and would probably not have bothered to waste the time contacting him.

But then again, as it turned out, maybe it is better I did.  Not only did I receive a form letter in response stating Denny’s implacable opposition to embryonic stem cell research, it came complete with a little lecture as to Denny’s "ethical and moral" determination to do whatever lay in his power to oppose hope for my daughter, his constituent, by ensuring we continue to throw thousands of stem cells in the garbage every year.

I think my reaction could best be described as: WTF???

My longstanding need for a new Congressperson had just become urgent...and personal.

So I started to look into the Dem primary in IL-14, started following the candidates, started reading blogs, registered on DKos, ended up reading this diary, left this comment.

By that point I was so worked up about a variety of issues, not least of them Iraq, that I was a little surprised, and a teeny bit irked, a week or so later to hear John Laesch introduce me to someone as a "health care voter."  I cared about a lot of progressive issues and that seemed very narrow for where my head was at, at the time.

But it was certainly a top priority for me.  After years of the kind of financial drain that can only be caused by being uninsurable myself and having an adult single-mother child who is also uninsurable and chronically ill, I had little to give to the Laesch campaign but my time, along with what skills I had managed to acquire from years of community organizing and public relations work.  I gave it.

Seriously, I think we all gave it all we had, and am not displeased with what we accomplished.  We tied Denny down.  We forced him to spend here.  We shaved off his margin.  We kept him from helping other Republicans get elected.  We held our own piece of ground, and though we lost the battle, the war was won.  Or so it seemed.

Y’all know Bush vetoed stem cell research again right?  And the votes weren’t there to over-ride.  Iraq is important, FISA is important, but damn it, this is too.  And so is universal single-payer healthcare.

Couple of weeks ago Kate got a head cold – one of those summer cold things we all find annoying, only she’s a diabetic and so immune-compromised.  Soon she had a deep cough.  She should have seen the doctor, but didn’t – she’s uninsured and we are both buried in medical (and related) debt because of it.  Her doctor won’t see her unless she pays up, which she can’t.  She called the local by-appointment-only free clinic and they said they won’t see her at all – for any reason – because her diabetes means she needs more consistent and intensive care than they can provide.  She needs constant care by a specialist in that field who can be always conversant with her current medical condition, so that specialist can, for instance, immediately call in a scrip for an antibiotic in such a case.  

No kidding?  Really?  This was not exactly news to Kate.  Or to me.

But since she can’t get that, or even seen by a free-clinic, she came to my place instead, kids in tow, and went to sleep in my bed.  I fed her chicken soup and sugar-free cough medicine and when her blood sugar went haywire I took her to the ER.  She spent most of a week in intensive care, with bronchitis and diabetic ketoacidosis, missing work and falling further behind in the process.  I missed some work too, because I had the kids on my hands, falling further behind myself, but hey we’re used to that.  We do this drill several times a year.  She didn’t die.  That’s what’s important.  I’ve seen an estimate that uninsured people are more than twice as likely to die of the same illness as the insured.  I am sorry to say I have more than enough experience with this to believe it.

Three days ago Kate got a bump on her eyelid that itched and tingled and she thought it was a mosquito bite.  The next day it was very red and very swollen.  Yesterday when she woke up it looked like she had a black eye.  She called the free clinic again and they again said they wouldn’t see her.  When I saw her after work last night and it looked like she had a black eye and had been punched in the jaw, I talked her into going to the ER.

She has MRSA, a "Superbug" they told her, on her eyelid, in her eye socket and it has spread to her lymph glands.  Possibly she picked it up from her stay in the hospital (though possibly somewhere else, they’ve escaped you know, a public health consequence of people taking half of their antibiotics and hoarding the rest, because they hope to be able to treat two illnesses for the price of one) which hospital stay was in turn occasioned by the fact that she can’t get medical care when she needs it because she is chronically ill and uninsured, until it is so bad she can check in through the ER.  

They would normally treat the MRSA with sulfa drugs, but Kate is allergic to sulfa drugs.  So they put her on two other drugs and are hoping that knocks it out.  I hope to hell it does too since the prognosis otherwise is, I understand, "probably fatal."

This is how people die from lack of insurance.  

And I have to admit John Laesch has a point on that "health care voter" thing.  I do care about Iraq and FISA.  But as any of you parents out there who have ever felt that sick crawling sensation in the pit of your stomach at the words "probably fatal" can guess, my priorities, today, are somewhat skewed toward "Health Care Voter."

47 million uninsured

John Laesch’s self-professed Blue Dog opponent in this primary is squarely with George Bush in believing that the solution is to keep better medical records.

In an echo of my reaction to finding myself on the receiving end of a moral lecture from Denny Hastert I can only to say to that: WTF???

As nyceve requested it would be nice to have a little more info about where he stands.

While we’re waiting for that answer, if you’d send some love to John Laesch, a true Progressive who understands the importance of universal single-payer, and embryonic stem cell research, you will have my undying personal gratitude.

And if you, like me, are being leached down to your last dollar by our pathetic excuse for a "healthcare system," please do find a few hours to volunteer for the progressive nearest you who supports real health care for all Americans.  

47 million uninsured Americans – and their Moms - will thank you.

Tags: IL-14, John Laesch, Dennis Hastert, health care, embryonic stem cell research, uninsured, 2008 elections, House, rant (all tags) :: Previous Tag Versions

Permalink | 40 comments

  •  Don't really need tips... (28+ / 0-)

    nearly as much as I need more and better Dems. Please support your local progressive - or mine - today.

  •  The second sad part to this, your poor daughter's (7+ / 0-)

    condition being the first, is that there are only a couple of Democarts[and no RepubliKKKans, natch] who favor universal access to publicly funded health care.Universal access to health insurance doesn't cut it.

  •  It is all I can do (10+ / 0-)

    to not use every single one of my sailor-ish swearwords as I read this story.

    I ache for you and your family.  And what I don't understand is that there are some so-called-Christians who don't think your daughter deserves the same medical care as their own daughters....

    @$%(@$^@)(*%@!#)(*%@

    And not that you need any more pissing off--but $#%@)(^& Dr. No (aka Coburn, R-OK) is keeping your grandkids from being protected from the insurance companies.

    This has got to stop.

  •  And here I am a diabetic (9+ / 0-)

    having gone through disability screening only yesterday for that and problems with my leg.  While the VA takes it's lumps for really, really bad management, following the screening [which was interupted by 2 hospital-wide power breakdowns] I went to my next appointment.  

    There I met with a VA pharmacist who wanted to check on all of my meds. She thought she wanted to change dosage.  This morning she called back and spiked the proposed change - there is another test they want to do.

    Now, compare the treatment I'm getting with what Kate is getting.  For almost 20 years now I couldn't buy health insurance due to suspected pre-exisiting conditions.  Why Kate shouldn't get the minimal level of care that I am is a damn crime.

    And that's why we need John Leasch and about 19 more Congressmen elected as Democrats this time - and I mean as real Democrats. John Leasch has a clue - the rest are lost in the ozone of wealthy comfort.

    My best to Kate.

    Possum for Congress Make Peace Possible. Jerry Northington.

    by llbear on Thu Aug 30, 2007 at 04:53:00 PM PDT

  •  best of luck to you and your daughter (8+ / 0-)

    I hope, for your sakes (and all our sakes) that we can get some serious healthcare reform in this country soon.

  •  More than tips, you need a break, some rest, hugs (5+ / 0-)

    Recommended by:
    itsmitch, hoolia, llbear, AntKat, Owllwoman

    a good cry, a babysitter, and maybe a glass of wine!

    This is just the damn saddest situation, or rather one of the 47 million damn sad situations, I know of.  

    We have got to make this THE issue for the 2008 elections.  Even above the war or, at least, equally as important.  

    Since I am not there to provide to you and you daughter any of the above mentioned items I will, in lieu of those things, go give monetary support to John Laesch.  

    My family is rife with Type II Diabetes, and high blood pressure due to a genetic predisposition. My son had a stroke this February at age 38, and was just able to get his soon to expire COBRA insurance to pay for a portion of his medical bills, after being layed off work in December.

    This is no way for Americans-or any human beings-to live!  

    "Liberals feel unworthy of their possessions. Conservatives feel they deserve everything they've stolen." Mort Sahl

    by maggiemae on Thu Aug 30, 2007 at 04:59:32 PM PDT

    •  Sounds like (3+ / 0-)

      Recommended by:
      maggiemae, hoolia, llbear

      you could use a hug and a glass of wine too.  I hope your son is doing well.  Isn't this just an insane thing to even have to address in the "richest country in the world?"  And we are just beginning to talk about real solutions.

      Thank you for the support for John - I know he will pursue this issue relentlessly in Congress.

      And, hey, the saddest part really is that it's one of 47 million damn sad situations, isn't it?

  •  wonderful diary (8+ / 0-)

    I myself went just under 3 years without health ins. from mid '03 until early '06. I have a rare genetic disease that leaves me vulnerable to infection. I've had 15 surgical procedures from the neck up including both ear drum's replaced. I live with chronic pain and frequent infection. I have no hope of ever being out of debt and am likely to be bankrupt at some point. Multiple hospitalizations over the past few years have put me in an impossible situation. At 46 I'm among the oldest people living with my condition and I try my best to remember how lucky I am. My anger and frustration at living in the only developed democracy that does not guarantee health care as a right of citizenship overwhelms me. I'm a good person who has a good humor and treats people well. Over the past few years I have found myself unable to maintain friendships with people who are voting against me. What I'm trying to say is thanks for writing this diary and reminding me I'm not alone. Hang in there my friend. My best to your daughter.

    Ohio's single payer action group is www.spanohio.org

    •  You hang in there too (4+ / 0-)

      Recommended by:
      raisin, itsmitch, hoolia, llbear

      Honestly?  I would feel better to think we were just some freakishly unlucky isolated incident out there, than to realize we are just living the average ordinary American healthcare nightmare.  What drives me around the bend is that this is what normal health care amounts to these days.

      They used to say most Americans were one paycheck away from being homeless, now I just feel like we are one treatable illness and an insurance denial away from being dead.

      Hope to see you around here for a long, long time to come.

  •  Thanks for posting this! Not that those of us (5+ / 0-)

    Recommended by:
    itsmitch, hoolia, llbear, Downtowner, Owllwoman

    here need reminding about the deplorable state of "Murder by Spreadsheet" or the crime of not providing health care to all.

    How anyone reading this can oppose national heath care is simply unimaginable to me.

    I tipped and rec'd, and I think you should send this to your local paper and media, and as many national media outlets as possible.

    My thoughts are with you and your daughter and my meager checkbook and activism are with you too!

    "Even if you're on the right track, you'll get run over if you just sit there." Will Rogers

    by AntKat on Thu Aug 30, 2007 at 05:01:49 PM PDT

    •  Thanks AntKat (4+ / 0-)

      Recommended by:
      LIsoundview, hoolia, llbear, AntKat

      I didn't think of sending this to local papers, but perhaps I should.  The more we can all spread the word about how terrible our healthcare system is the better.  And you are right that we hear and see stories like this all the time, but it is time we hear and see more of them in local media outlets.

  •  Has your daughter checked into medicaid (3+ / 0-)

    Recommended by:
    hoolia, llbear, Downtowner

    or state run med. programs? In Mi. we have a program for adults who are uninsured. They always run out of money but it might help some. Your daughter needs to be under the care of an Internist, and you probably know that. This is just tragic that she has to suffer and worry like this. Wish I could help. We need Health care Now.

    "Though the Mills of the Gods grind slowly,Yet they grind exceeding small."

    by Owllwoman on Thu Aug 30, 2007 at 05:02:11 PM PDT

    •  She's not eligible (6+ / 0-)

      She makes barely enough to support herself and the kids, but its too much for her to be eligible for assistance.  

      In fact, the deadbeat father of her children has eluded so many child support payments and health insurance payments for the kids over the past two  years (I think Kate has seen about $500 in support payments in the past two years), that the last time the court failed to catch up with him (he works temp jobs and moves around a lot to avoid the court finding him) the judge apologized to Kate, but ordered her to take over the kids health insurance payments to ensure they are continuously covered.

      She gets a discount on that from Illinois All Kids, but the premiums on top of her own expenses in supporting herself and the kids, are an additional financial burden.  I pay for most of her insulin and testing supplies and have paid a lot of her medical bills.  She hates it, because she feels like she should be able to take care of herself.

      •  Fuck. (2+ / 0-)

        Recommended by:
        llbear, Downtowner

        I'm still swearing from reading your diary.

        She hates it, because she feels like she should be able to take care of herself.

        You know, I came to dKos for Katrina, and I stayed for health care.  I'm Canadian, I have never known the anguish that you feel for myself or anyone in my family.  It simply isn't an issue.

        But this is about more than health care, and failings in the US system vs some other country's.  It's about society, and why we have government.  We are social creatures, because we learned millions of years ago that if we hang together, we all have a better chance of survival.  Over the years, we have gone from governments whose sole purpose was to protect the rich from the rest of us rabble, to creating democracies where government has no higher calling than to help it's citizens cope with whatever exceeds an individual's ability to do.  

        Government has no higher calling than to help people like those unfortunates from the Gulf Coast who lost everything and needed rescue, and to help people with such issues as catastrophic personal misfortune.  This includes serious illness like your daughter's.  I understand that what I am saying is directly contrary to GOP and Libertarian propaganda that is so prevalent in the US, so much so that college graduates are mouthing Randian nonsense like 'self-reliance' is some sort of religion.

        As a political activist, I have to say that Americans will get universal health care when they are prepared to vote for it.  I mean cut through the bullshit and the propaganda and vote for, and only for, people who promise and have a working plan for universal health care.  Why is this so fucking difficult !?!?! Every other country on the fucking planet is doing it!!!!!  If you came to Ottawa and spouted off some nonsense about replacing our health care system with a for-profit killing machine, you would be ridden out of town on a rail!  Why don't Americans act?  Do people really think that your daughter deserves to die from an infection so that they can have slightly faster access to a doctor if they happen to be rich?  Do people want to pay three times the price for essential drugs because they think they're more than making up the difference with their stock portfolio?  

        This is insane!  Why can't health care be the #1 issue in 2008?  Who among Dem candidates is even comfortable talking about it?

        /rant

        Mark Twain -Let me make the superstitions of a nation and I care not who makes its laws or its songs either.

        by Kingsmeg on Thu Aug 30, 2007 at 07:32:02 PM PDT

        [ Parent ]

  •  heartrending (6+ / 0-)

    what's happening to America?

    I know the answers, but it's all I can find to say.

  •  Your diary will get a lot of attention. (6+ / 0-)

    Recommends and tips from another parent.

    My son is not insurable. Epilepsy. He's 36 years old. Every day is a worry, a concern, that he has meds and that they're working.

    He's not employed so the fact that he's medicated at all is a miracle.

    Single payer--universal health care--that's my number one issue.

    Thank you for your diary. I'm almost inarticulate on this issue, I'm so frightened. May your daughter, and you, find health and peace.

    You're a great parent. It's so hard to write about this stuff, after you've spent the day dealing with it.

    Tears, hugs, and support.

    J.

    •  Thank you (2+ / 0-)

      Recommended by:
      hoolia, llbear

      My niece, of about the same age as your son, has epilepsy, but thankfully is insured, and yes she needs her meds every day.  I'm glad your son is getting the meds he needs and hope he is able to continue to.

      Hard to be articulate when you are knotted up in fear, isn't it?

      All the best to you and your son.

  •  "a death sentence" (4+ / 0-)

    Recommended by:
    mickT, hoolia, llbear, Downtowner

    My mom's been in tears because of insurance issues lately (including today).  Nothing lifethreatening, but it cost nearly $1,500 just for a doctor's visit and blood tests. No joke. And this is WITH insurance.  The insurance company is picking up about $300.  I'm taking care of the rest.  There are 47 million uninsured,but the plight of the underinsured is sometimes just as tragic.

    •  Absolutely as bad (2+ / 0-)

      Recommended by:
      hoolia, llbear

      and a lot of the problem of the uninsured is you never know when they will find cause, or a clause, sufficient to pull the rug out from under you and leave you completely uninsured.

      Not that it does a lot of good anyway, as your mother's example shows.  Hope she is well and stays well.

  •  My daughter's fiance went through (4+ / 0-)

    Recommended by:
    mickT, el dorado gal, llbear, Downtowner

    what your daughter is going through.  I'm convinced that he's suffering the consequences of his period without insurance.  For as long as possible, this young man worked.  Due to the chronic nature of his condition and the worsening of its consequences, he finally ended up holding onto part time jobs that offered no insurance.  His health suffered...he had to scramble to be able to afford just his insulin.  His parents helped, but he was young and proud and wanted to prove that he could make it on his own and rarely asked for help...even when it meant going without.  Finally, the consequences seemed to catch up all at once...a few years ago he spent about 200 days in the hospital out of a calendar year.  At that point, he did qualify for medicaid...but the damage had been done.  He quickly progressed to near kidney failure and required a transplant.  At this point, he finally got his disability approved.  The consequences are still on-going, however.

  •  I'm wondering what mechanisms of (0+ / 0-)

    universal single-payer health care make you so certain of positive long-term medical outcomes for your daughter.

    •  There is no thing (1+ / 0-)

      Recommended by:
      valion

      short of a cure, that will provide postive long-term medical outcomes for my daughter.

      For that, I, like sufferers and loved ones of sufferers from host of currently incurable diseases, place great hope in the possibility of a cure through embryonic stem cell research.  In the years since she my daughter has been diagnosed, federal funding for that research has been blocked, and blocked repeatedly, during which time she has sustained irreversable damage to organs.  Every year it is further blocked, the hope of millions is trickling slowly away as organs are damaged and nerve endings die and people die too.

      Diabetes, though not curable, is controllable.  Good control of diabetes requires, in addition to the patient's own dedication to the discipline required and as the health clinic that refused to see my daughter noted, consistent monitoring by a competent specialist, who can act swiftly to intervene in the case of, for instance, the kind of infection my daughter had when she first developed bronchitis.  

      Had she been still been under the care of her usual specialist at that time, her specialist would have gotten a phone call from Kate, and would have undoubtedly prescribed antibiotics, and quite possibly antivirals immediately - something doctors rarely do over the phone for anyone any more.  

      But since Kate is brittle, and reacts in a strongly negative way infection, and her specialist was aware of that and had a host of Kate's prior lab tests to refer to, the drugs would have been ordered pronto. She would have also ordered more frequent blood-sugar testing and increased insulin does.  Kate did that herself when she got sick, but it simply turned out to not be enough.

      I have seen Kate get sick and seen this happen both ways: Kate's specialist orders the drugs, infection is killed fast, Kate is in no trouble, but also, Kate has infection, Kate has no insurance, Kate tries to delay or seek help from an emergency room or clinic unfamiliar with her history - DKA.

      Here is some information on DKA from medline: http://www.nlm.nih.gov/...  It is not a place a diabetic wants to be, as it can come on swiftly and be very swiftly fatal if not treated or treated too late.  Kate is "brittle" - she can quite rapidly fall into DKA with a very slight illness.

      Since Kate has not seen her specialist since shortly after she lost her insurance a couple of years ago, and remember, the clinic would not see her at all because they felt they were at risk of screwing up in the absence of data about her underlying condition and history (and are neither equipped nor staffed to start collecting that and monitoring her on an ongoing basis) her treatment was delayed until she was in full blown DKA and sick enough to be admitted to ICU trough the ER - i.e. on death's doorstep from the DKA alone.  

      Not to mention the progression of the cold to bronchitis.  It took them three days just to get the DKA under control.  As is not uncommon for Kate, and as her specialist knew, but the ICU doc assigned to her refused to believe, Kate has a disconcerting habit of not showing an elevated white count or running a fever even when quite sick - she showed this trait even as a child before the diabetes.  Type I Diabetes is an auto-immune disorder, and both of her parents have auto-immune disorders (her father Type I diabetes, me leukemia) so it is not alltogether surprising that Kate's immune system shows other abnormalities.

      I argued with the ICU doc about this for three days to no avail and he refused to put her on antibiotics, though she was coughing persistently and deeply, until her white count eventually did go up on his lab tests.  At which point the DKA started to come under control as well.

      Quick intervention here would have prevented the life-threatening DKA and/or the hospitalization.  Quick intervention for a diabetic is critical, but requires the kind of consistent health-care that the uninsured in America have no access to.

      The SMRA "superbug" Kate has today she probably picked up during that (quite possibly unecessary if she'd been under a doctors care) hospitalization, since it first appeared in hospitals.  But, then again, as noted in the diary, she could have picked it up elsewhere.  

      Some bacteria have become very resistent because patients take half of their antibiotics, then stop them when they feel better.  This has become more common as people, lots of uninsured among them, try to hoard some against their next illness.  Bad idea from a public health standpoint, as this means they are walking around with strengthened, but unkilled, versions of those bugs in their bodies to spread to the rest of the populace.

      Diabetics are more susceptible to infection in general, and much more prone to skin infections, since they have impaired circulation (thus, gangrene and amputations), so any sign of a skin infection should also be reported to a specialist immediately.  As Kate would have done, if she had one.  Heh, this infection got bad very fast.  Very, very fast.  But still, she had been trying to seek care for a day or two before it got so bad it looked like she'd been in a bar fight and she went to the ER.

      So the "mechanism" I envision single-payer health care providing my daughter is routine access to a health care provider conversant with her condition and her history who can, armed with that information, react as rapidly as such specialist knows they must for their diabetic patients.  

      I'm not kidding myself that such care as checkups and tests every three months - considered  routine for diabetics - will achieve a positive long-term medical outcome.  For a diabetic, access to such routine care means the difference between immediate life or death on a day to day basis. At the moment, I would settle for that short-term positive outcome.

  •  Sorry I'm Late (2+ / 0-)

    Recommended by:
    llbear, Downtowner

    but we had a meeting at Laesh's office this eve.
     What can I say?  There are no words that can help.  I hope you understand that.  All we can do is to try to change this unjust system one Congressman/Senator at a time....Joe

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