Today Senator Edward "Ted" Kennedy died after a long battle with cancer.
I was born shortly after his famous brother was elected to create Camelot, and I was John-John's (JFK Jr)age, 3, when JFK was shot and killed. It is one of my earliest memories, watching my parents cry and feeling angry at this president person who had brought them so low.
In later years I learned more about the Kennedy family, not just because my father was a lifelong Democrat who worshiped the likes of MLK and JFK, but because they seemed to have everything in terms of wealth and fame, yet they consistently had these things taken from them or rendered useless when family members were killed for no good reason.
When I was in graduate school in Massachusetts, I heard a lot about Teddy Kennedy, the fat younger brother who didn't get the glamorous lifestyle or good press that his brothers got, nor did he have the stunning, brilliant wife or the meteoric career---but he had something that a lot of us pudgy folks have, patience and the ability to work behind the scenes, without fuss or bright lights, to get things done. I actually met and talked to Thomas P "Tip" O'Neill when I lived in Mass, and he was also a chubby Irishman who had no time for those who lorded their wealth or fame over others, and who didn't actually get anything done but propagate their 'brand.' I met Ted Kennedys son, briefly, once as well, and found him charming. I was saddened when he died of cancer at a young age.
Yes, they were full of surprises and Irish blarney and tragedy and pathos, but you could never say the Kennedy clan were dull people who lived mousy lives and had no impact on America. Instead, they enriched us with their unstinting public service, giving their very lives for this country and its people.
So I raise my glass of iced tea and lemon to Tip and Ted, both passed but not forgotten. May they rest in peace at the right hand of God.
Speaking of round guys with big bellies, I happened across some marvelous Buddha statues at a garage sale in which some former missionaries were 'de-cluttering' their home of what they seemed to think were 'pagan' statuary and icons of various kinds, including some lovely carvings of Kuan Yin, goddess of compassion and the begging Buddha, walking Buddha and various Hindu figures like Ganesh and Shiva.
The missionary couple had traveled to China, Singapore, Thailand, Japan, Vietnam and Taiwan, so they had quite a collection and seemed anxious to get rid of their great stuff at pennies on the dollar.
I looked at the begging bowl Buddha, dark red, with his friendly rats running around him, his big smile and his chubby cheeks, and I got him for a dollar, and then I grabbed the traveling Buddha with his walking staff, great grin and shiny red tummy,and I couldn't resist bringing him home for a quarter. I realized, as I set them around me, that they don't just physically resemble me, with their upholstered bellies, but they also represent my outlook on life, that of a happy heart who loves being around other people, traveling to explore other countries, and loves to eat and enjoy the sensuality of life. If that couple had had any statues of Siddhartha with a pile of books by his side, I think I would have swooned with joy.
Oddly enough, my dear friend Janine, while on vacation, bought me a miniature prayer flag set that I hoisted above my traveling Buddha, and she also brought me a lovely raku wishing bowl, tiny and gloriously fired in rainbow glaze colors.
Perhaps these things were meant to be, and my path is now being heralded with heavenly help, or perhaps they are just here to make me smile, either way, I am grateful to have these new editions to my life.
In other belly news, I've gained 12 pounds since my surgery in June, probably because I haven't been able, due to monetary constraints, to afford the expensive food that I know I need to eat to lose weight. Simple carbs are cheap, and while we struggle to put food on the table, those are the foods we can most easily access. But I've been working out regularly, and hard, since June 15, 10 days after the operation, so I am still building muscle, if not taking off fat.
Friday of this week I go in for my follow up colonoscopy to see if my colon and small bowel have healed up completely, and if so, whether or not I go back to taking Imuran/Azithioprine to prevent further strictures and obstructions, or at least slow them down. But tomorrow, I must do the ultimate purge, which is the hardest part of the whole process, so say a prayer for me as I choke down the nasty PEG solution by the quart.
This summer has flown by, but I am looking forward to fall (my favorite season), and a renewed commitment to keeping my body healthy.
Extra note: The colonoscopy went well with my great friend Dr Fred Drennan, and he tells me that my surgery is almost completely healed, though he doesn't want me to go back on Imuran again, because he fears that it will fry my liver. So for now, I am just taking Pentasa and trying to keep my colon happy with soluable fiber.
Wednesday, August 26, 2009
Thursday, July 16, 2009
A Voluptuous Essay That Speaks Volumes
As a larger person, I've struggled with self acceptance my whole life, always fighting the demons of the main stream media and societies expectations of what girls and women are 'supposed' to look like, not to mention what the healthcare industry says we should be, with their strident shouts of an 'obesity epidemic' in America. Despite the fact that there is a multi-billion dollar weight loss industry in this country, Americans are fatter than ever before, due to the fast food industry, portion sizes that are out of control, genetics, ailments and a host of other reasons. Though I've been 'normal' sized in my life, for about 4 years in the late 1980s, I realized several things during that time that have stayed with me. One, that sexy is more a state of mind than of body mass, two that even thin I didn't really attract the kind of guys I wanted to become intimate with, for the most part (Jeff Wilson and Jim Flack being the notable exceptions) and three that living on about 900 calories a day and never eating anything with sugar, taste or fat in it wasn't a sustainable diet for the rest of my life. I also recognized that exercise was a key component to losing weight and keeping it off. So here I am, 20 years later, struggling to lose 50 pounds after working for two years to lose the first 50, and it is harder than ever to deal with food, exercise and my body.
My friend Janine Ferrell lead me to this marvelous essay by Kimberlee Della Luce, in which she talks about appreciating your curves, your thighs, your soft belly. She reminded me of some things I'd learned back in the 80s, about accepting that I am never going to be a size 6, that my body has natural curves, even at a 'normal' weight, and that it's okay, good in fact, to be voluptuous and beautiful. This essay is reprinted with the permission of the author. She has my gratitude for her inspiring words of wisdom.
My Lush Abundance
By Kymberlee della Luce
This is a paper I wrote in the spring for a class called "The Body in Context". I know a lot of us struggle with self-esteem and body issues so I thought I'd share a fractal of my experience/thoughts on the matter for anyone interested. Here is is:
My Lush Abundance
I am lush and abundant. Fecund and fleshy, curvy am I. This is how I see myself today but it has not always been this way. Learning to embrace the fat on my body has been a journey for me. I suppose I’m still on that journey but I have come much closer to self-acceptance than ever before.
As I consider the fleshy fat of my form, I think about all the people I know who seem to constantly be striving for something. I hear, “I’m de-toxing again,” or “I’ll feel so much better about my life when I lose these ten pounds.” I remember being indoctrinated with that mentality and feel sad when I even consider it. These kinds of statements make me think of the puritanical, colonizing ethics that have stained our country with madness—creating a sense that somehow just being a fertile land isn’t enough. Our country seems to have been founded on a notion of conquering something wild and lush and carving it up for consumption and I think it gets in our consciousness. This is how I treated my body for too long.
For too long, I felt like my body was worthless. I had asthma as a child and couldn’t run. I never figured out how to stand on my head or do a cartwheel either. What I wasn’t encouraged to see is how strong my body was, how I had nearly unending endurance, how I could swim and climb and dance. The focus by my family, especially my mother, most of my life was how much fat was on my body. It was some sort of obsession. No amount of cultivating other talents or strengths seemed to matter. I was smart, artistic and funny but not skinny. My mother once told me, “You know, you would be perfect if you were skinny.”
The goal of becoming perfect was ever present in my life until just a couple of years ago. I have always felt so much pressure to be everything—anything—people wanted me to be. I often had no sense of my individual identity because I was trying to achieve something beyond my reach. I wanted to look like Audrey Hepburn which is biologically impossible. No amount of dieting or plastic surgery was going to change my DNA but I didn’t realize that. I always felt if I could just get there—wherever “there” was—I would be acceptable and loved. These feelings of worthlessness have everything to do with my fat. It never went away entirely and I never felt good enough to be loved which has left me searching for love outside of myself in places where love wasn’t present.
In my psyche, I have somehow conflated the issues related to my fat with issues related to sexuality. Because I was curvier, I developed earlier than many girls and had grown men ogling men when I was twelve years-old. I lived with an odd sense that I was both repulsive (because of my fat) and highly desirable. I felt a sense of hunger from others—hunger for my abundant flesh. I confused that hunger with love and thought that I was loved because I was desired which led to a series of wrong turns which led to more guilt and self-loathing.
Guilt seems to be a big part of the conversation that I have had with my body much of my life. My experiences with organized religion made me feel as though just being female made me tainted and “sinful.” Being raised by a mother who examined every morsel I put in my mouth made me feel as though enjoying food was wrong. I realize in retrospect that I used to feel guilty anytime I experienced pleasure of any sort! I believe that collectively the disconnection from the body in search of “transcendence” by patriarchal religious institutions has led to a disconnection from the earth and an appreciation of spiritual immanence. I see a direct correlation between my desire to hack away at the flesh of my body or to deny myself the pleasure that comes from being in a body and the collective denial of the Feminine Principle.
Denial of pleasure and rejection of the body is something I am learning to no longer participate in. I have learned the wise woman ways of caring for the body that feel much more holistic to me. Rather than doing things that feel violent and unpleasant like colonics and de-toxing with harsh, bitter herbs, I have learned the value of eating cleansing, healthy foods, drinking water and getting fresh air and exercise. I’ve noticed that when I tune into my body, she tells me what she needs. I have heard a voice over and over that says so clearly, “Just love me. Please just love me.”
Because I do love myself (mostly), I tune out the external messages from my culture about what I should look like, what my percentage of body fat “should” be and how I should deny what brings me pleasure. I reject and challenge images of the fat woman in a cartoon as the buffoon or the evil witch. I am choosing to consciously rewrite and co-author the story that has been written on the flesh of my body. Along with the rest of us, this conversation going on inside of me continues as I learn to embrace the wholeness of myself, to find balance and to revel in the lush abundance of my body.
My friend Janine Ferrell lead me to this marvelous essay by Kimberlee Della Luce, in which she talks about appreciating your curves, your thighs, your soft belly. She reminded me of some things I'd learned back in the 80s, about accepting that I am never going to be a size 6, that my body has natural curves, even at a 'normal' weight, and that it's okay, good in fact, to be voluptuous and beautiful. This essay is reprinted with the permission of the author. She has my gratitude for her inspiring words of wisdom.
My Lush Abundance
By Kymberlee della Luce
This is a paper I wrote in the spring for a class called "The Body in Context". I know a lot of us struggle with self-esteem and body issues so I thought I'd share a fractal of my experience/thoughts on the matter for anyone interested. Here is is:
My Lush Abundance
I am lush and abundant. Fecund and fleshy, curvy am I. This is how I see myself today but it has not always been this way. Learning to embrace the fat on my body has been a journey for me. I suppose I’m still on that journey but I have come much closer to self-acceptance than ever before.
As I consider the fleshy fat of my form, I think about all the people I know who seem to constantly be striving for something. I hear, “I’m de-toxing again,” or “I’ll feel so much better about my life when I lose these ten pounds.” I remember being indoctrinated with that mentality and feel sad when I even consider it. These kinds of statements make me think of the puritanical, colonizing ethics that have stained our country with madness—creating a sense that somehow just being a fertile land isn’t enough. Our country seems to have been founded on a notion of conquering something wild and lush and carving it up for consumption and I think it gets in our consciousness. This is how I treated my body for too long.
For too long, I felt like my body was worthless. I had asthma as a child and couldn’t run. I never figured out how to stand on my head or do a cartwheel either. What I wasn’t encouraged to see is how strong my body was, how I had nearly unending endurance, how I could swim and climb and dance. The focus by my family, especially my mother, most of my life was how much fat was on my body. It was some sort of obsession. No amount of cultivating other talents or strengths seemed to matter. I was smart, artistic and funny but not skinny. My mother once told me, “You know, you would be perfect if you were skinny.”
The goal of becoming perfect was ever present in my life until just a couple of years ago. I have always felt so much pressure to be everything—anything—people wanted me to be. I often had no sense of my individual identity because I was trying to achieve something beyond my reach. I wanted to look like Audrey Hepburn which is biologically impossible. No amount of dieting or plastic surgery was going to change my DNA but I didn’t realize that. I always felt if I could just get there—wherever “there” was—I would be acceptable and loved. These feelings of worthlessness have everything to do with my fat. It never went away entirely and I never felt good enough to be loved which has left me searching for love outside of myself in places where love wasn’t present.
In my psyche, I have somehow conflated the issues related to my fat with issues related to sexuality. Because I was curvier, I developed earlier than many girls and had grown men ogling men when I was twelve years-old. I lived with an odd sense that I was both repulsive (because of my fat) and highly desirable. I felt a sense of hunger from others—hunger for my abundant flesh. I confused that hunger with love and thought that I was loved because I was desired which led to a series of wrong turns which led to more guilt and self-loathing.
Guilt seems to be a big part of the conversation that I have had with my body much of my life. My experiences with organized religion made me feel as though just being female made me tainted and “sinful.” Being raised by a mother who examined every morsel I put in my mouth made me feel as though enjoying food was wrong. I realize in retrospect that I used to feel guilty anytime I experienced pleasure of any sort! I believe that collectively the disconnection from the body in search of “transcendence” by patriarchal religious institutions has led to a disconnection from the earth and an appreciation of spiritual immanence. I see a direct correlation between my desire to hack away at the flesh of my body or to deny myself the pleasure that comes from being in a body and the collective denial of the Feminine Principle.
Denial of pleasure and rejection of the body is something I am learning to no longer participate in. I have learned the wise woman ways of caring for the body that feel much more holistic to me. Rather than doing things that feel violent and unpleasant like colonics and de-toxing with harsh, bitter herbs, I have learned the value of eating cleansing, healthy foods, drinking water and getting fresh air and exercise. I’ve noticed that when I tune into my body, she tells me what she needs. I have heard a voice over and over that says so clearly, “Just love me. Please just love me.”
Because I do love myself (mostly), I tune out the external messages from my culture about what I should look like, what my percentage of body fat “should” be and how I should deny what brings me pleasure. I reject and challenge images of the fat woman in a cartoon as the buffoon or the evil witch. I am choosing to consciously rewrite and co-author the story that has been written on the flesh of my body. Along with the rest of us, this conversation going on inside of me continues as I learn to embrace the wholeness of myself, to find balance and to revel in the lush abundance of my body.
Thursday, July 9, 2009
The Healthcare System in the US is INSANE
My friend Monica Jenkins put this link on her Facebook page today, and in reading this woman's harrowing story I was reminded of my own story of having no insurance (in April) and having an emergency bowel obstruction and being taken to a crappy local hospital that charges thousands of dollars for a one-night stay. Even when you do have insurance, as we do now, they still want thousands in a deductable before they will consider paying something to the doctors and the hospitals for your operation and recovery care. My husband and I are drowning in medical bills that we can't pay, currently, and I am told that I have a snowballs chance in Hades of getting disability.
Anyway, read this and weep, folks, because even if you are healthy now, you won't stay that way forever, and eventually, you, too, will have outrageous medical bills.
How I lost my health insurance at the hairstylist’s « The Progressive Fox
Source: www.progressivefox.com
by Downtowner, posted on Tuesday, July 7th, 2009 at 10:35 pm
So you’re chugging along doing all the things you do as a responsible citizen, you work, and pay your bills and your taxes, you are there for your children, and fighting for your marriage, you even volunteer. It’s spring, 1998, and gradually you just become so tired it’s a struggle merely to climb a flight of stairs.
Oh, well, you do have two daughters in college, another nearing the end of her senior year in high school, a son in middle school, a full-time job, a house to take care of, are back in college, and have two dogs, two cats, and oodles and oodles of marital strain.
Fatigue sort of goes with the territory, and like many working moms, you just push past it. You get up, you get the family off in various directions, you go to work, you go to class, you cook dinner, you help with homework, go to games and track meets, do housework, set boundaries for the two kids at home and field frequent counseling-like calls from the two who are not, you try to work through problems with your husband, and you collapse exhausted into bed, get up the next day, and do it all over again – it’s a routine you dare not interrupt with reflections on your fatigue – there is no time.
Then one day…
You show up two weeks later than you should have to the hairstylist (pretty common when you are constantly pressed for time) and instead of the usual lecture about the color of your roots, she turns you around in the chair and says:
“I look at people’s skin tones all day long and try to decide the best coloring for their hair, and I can tell you this: gray is not a normal human skin tone. Get out of here right now and go see your doctor.”
For some reason, though she is not the first person to note you don’t look your best lately, this is the one thing that manages to penetrate the fatigue-fog and you do as you are told.
You call on the way, check in, sit down in the crowded waiting room resigned to waiting for a couple of hours, and a mere minute later the doctor, passing by the glassed in sliding windows on the other side of the wall catches sight of you, comes out, and demands to know: “How did you get so anemic?” You say, “I am?” He says, “Come with me right now” takes your hand and drags you back to an examining room.
Later that day, at the oncologist/hematologist office, this new strange doctor takes blood, orders up an outpatient transfusion, tells you that you no doubt have acute myelogenous leukemia, could keel over dead at any moment as long as you are untreated, and should now go home and call him the very minute the HMO calls you and tells you to check into some local hospital or the other – but should on no account whatsoever check into that local hospital.
You find this direction to avoid hospitalization confusing, in light of the “keel over dead untreated” stuff and say so. Whereupon oncologist/hematologist guy says HMO will try to check you into local or even regional hospital – because it’s cheaper – but in his opinion no local or regional hospital should be treating leukemia, since cure rates double in large teaching institutions. Risk of keeling over dead while he is arguing for your life with HMO is less than risk of dying in local hospital. Then he writes you a list of five hospitals in Chicago that you can allow yourself to be checked into, and says if it’s one of these ok, but it won’t be, so call me when they tell you to go to a local hospital.
Sure enough, he’s right; they do, the very next day. You call him. He works some magic you know naught of (though local rumor tells you later that he informed HMO that he will be sure to make himself available to testify at your spouse’s wrongful death suit later) and you get the referral to the large teaching institution later that day.
Telling your children…no, you won’t write the details here, beyond saying that especially for someone who lost a parent at the age of eleven, it’s the hardest thing you’ve ever done to try to be honest about the prognosis (which is grim) but reassuring about your love for them and intent to fight for your life.
Skip ahead then. On your first day in large teaching institution, you are visited by a social worker, who surprises you by demanding to know not the details of your home life, or about your state of mind on being diagnosed with a more-lethal-than-not form of cancer, but simply: “Who is carrying your insurance, you or your husband?”
You think this is rather cold for a social worker and inform her somewhat frostily that you are sure the bill will be taken care of – it’s pre-approved.
Social worker looks at you with what you interpret as pity and says it’s really, really important. So you say, spouse, as you work for small non-profit that offers no benefits, but also admit to her that you think marriage is for sure doomed now.
“Good, good!” she says.
And you wonder why, why, on top of extra-lethal form of cancer, must you also get unbalanced social worker?
She must be able to tell from your expression that you think she’s nuts, because she explains, like so:
If you worked for a company that offered insurance, if you carried your family’s insurance, next year your insurer would slap a million dollar surcharge on the company policy for carrying a leukemia patient. The company would get the bill and someone in accounting would question “what is this extra million dollars we are being billed?”
The insurance company would explain to them that the million is for you, and it is yearly, but is, ahem, “fixable.” They will say “as long as she is on your insurance (wink, wink) this charge will be there. So what you have to ask yourself (more wink, wink) is whether this employee is worth a million dollar a year salary on top of what you are already paying her.”
Social worker said she had seen small business owners go almost broke trying to cover this charge, and had even heard of one who defiantly did go broke, throwing all of the employees out of work. But more usually, she said, they just fire you.
“Wait, wait!” say you, “Isn’t it illegal to fire someone for their health history? Suppose I’m all well and working?”
She looks at you with more pity, says yes, so of course they will have to find “cause” to fire you, which any employer can always do.
“But I am a very, very good employee!” you protest.
“Yes,” she says, “but they can always find some cause.” The real problem she goes on to explain, is that you will find a new job, that company’s insurer will slap them with the surcharge, they will take their turn at firing you, until you’ve been through six or seven jobs in a year, fired “for cause” from all of them, which of course looks very, very bad to a prospective employer.
“So in a year or so of this, you will not just be uninsurable, you will also be unemployable.”
She asks who your husband works for, since they’d probably try to do this to him too. You say he is a cop working for a municipality, which pleases her. “They have all sorts of layers of officials, elected and otherwise, to work their way through to get to the decision, then once they do they have to get past his union, so it will take much longer to get him fired.” She also, though, offered sympathy for the fact that what with the police union and the municipality fighting out whatever “cause” they got him on in such a public profession, it was sure to end up in the local papers and disrupt all our lives – including the children’s – when they did get that far.
You remind her you seem headed for divorce, and she says, well, okay then, just carry the COBRA to the limit and keep on working for small not-for-profits that don’t offer insurance.
You ask her what you are supposed to do for health care and she says sooner or later the insurance companies would force you onto Medicaid – either by means of making you unemployable and broke, or by means of you being uninsured and going through any and all assets you have paying medical bills until you are broke and sick enough that you can’t work, and end up on Medicaid.
You are rather horrified, but have other things (like trying to stay alive and simultaneously on top of what your teenage children are up to from the hospital many miles away) on your mind, and besides, this all seems so uncivilized and melodramatic and “worst case scenario” and…unlikely, somehow, so you set this aside for now.
You live. In fact you are cured!
A year later you are divorced. You are struggling to get by as a single mother, and you are making the COBRA payments.
Your ex comes by to pick up your son and tells you that the municipality he works for’s administrator told him in absolute shock that the insurance company slapped a million dollar surcharge on the municipality’s insurance policy, and said it would go on yearly until you are off, but since you had exercised your right to COBRA it would “do no good” if your ex was gone. The administrator said he was so shocked and offended that he went to ALL the other carriers possible, and one by one they all gave him back a “no bid” with the proviso that they would welcome the opportunity to bid…just as soon as that leukemia patient’s COBRA rights expire. So barring leaving all the municipality’s employees naked of insurance they were absolutely trapped.
Social worker begins to seem less melodramatic to you.
Your COBRA rights expire.
You go on ICHIP, the program for uninsurable Illinoisans. It’s easy, because your disease is on the short-list of twelve or so that automatically render you “uninsurable for life.” You discuss the horrible policy benefits with your car insurance agent – who is also a trusted friend. She tells you she is also on ICHIP (though it was much harder for her to get on it - she had to get three denials from private insurers) and the entire benefit it provides is to “get you through the door of a hospital” since if you really do get ill you will get benefits so minimal that you will be forced to pay the vast majority of the bills until you are bankrupt and forced onto Medicaid.
Social worker begins to seem downright reasonable to you.
The day comes when you weigh the many, many hundreds of dollars you are paying on a monthly basis, through ICHIP, but to the very insurance company that once charged your ex’s employer a million dollars (coincidentally, the exact bill for your treatment over your year of leukemia fell just short of that million, by about ten dollars, so this company was out exactly nothing) of what is starting to smell like blood money, against your daughters continuing in college and your son eating on a regular basis.
You get a second job.
Your daughter gets sick with Type I Diabetes while uninsured and you weigh those hundreds of dollars to the insurer you now thoroughly detest and you drop that insurance and buy her insulin and syringes and test strips and trips to the doctor instead. You are now so broke that if you would just give up and quit your two jobs and collapse already you are certain you would qualify for Medicaid. But you are stubborn and you go to work.
Your mother – who though she has been a strict vegetarian since birth has very high cholesterol that will not respond to diet and who has been on high blood pressure medication for decades - survives her third heart attack and you consider the fact that your father died at 39 of a heart attack and you think that probably you are not far away from one yourself.
Your oldest sister says while visiting Mom at the hospital that she has been on high blood pressure and cholesterol medication for a decade too.
Your nearest-in-age sister, also a strict vegetarian, goes to get her cholesterol checked and sure enough is placed on high cholesterol and high blood pressure medication. She is also diagnosed as almost completely deaf in her left ear, as your father was at a very young age, and as you suspect you are too. She gets a miniscule hearing aid. You are careful to not put the phone to your bad ear.
Your little brother is diagnosed with cholesterol that doesn’t go down in response to a diet (you get hilarious stories about your sweet and gentle sister-in-law’s brutal enforcement of said diet) and high blood pressure. He goes on medication.
You go to the drug store and test your blood pressure when you wake up with the blood pounding in your ears one day and, sure enough, it’s crept up to high borderline. You try a myriad of things and finally hit on running every day and cutting all of the salt out of your diet to get it to the high end of “normal.” You check it once a week.
You struggle – much – with your weight and the overwhelming need for naps and your ridiculously dry skin and your thinning hair. Your late-twenties daughter, who has just been diagnosed with a completely non-functioning thyroid gland, goes on thyroid medication and lectures you that these are all exactly her symptoms, so you should get your thyroid checked. You know it, and are aware (as your daughter is not) that your mother and sisters have all also been on thyroid medication for years, but you can’t afford it – or the regular doctor visits and monitoring that go with it.
You go to coffee with your friends. They have not had an easy time of it lately with their own and their husbands’ health. In fact, it’s been a horrible couple of years. Your heart bleeds for them and you can think of no words sufficient to describe their courage and grace. And yet sometimes you feel jealous that they have access to medical care, and then you just feel guilty and small-minded, because they need this care, and they are wonderful, wonderful people who have worked hard for the lives they’ve built and who give much back to their communities.
But still…you hear about one friend’s breast cancer, and you remember that your oncologist/hematologist warned you that all leukemia patients who survive eventually die of some form of cancer – because the chemo drugs are “the strongest carcinogens, in the strongest doses, known to man.” And you remember that your maternal grandmother died of ovarian cancer, and your nearest-in-age sister was successfully treated for ovarian cancer at the age of 24. But you know you can’t afford a tenth of the screenings you should be having on an annual basis – not even once.
Or you hear about a husband’s heart surgery and you think you might well need that one too – your mother, her sister, and one of your own have all had that particular surgery. But since you can’t afford the surgery, you don’t bother to try to have the tests you can’t afford either.
You don’t go get your hair done any more. You can’t afford it. So you do it yourself.
But you mostly fret about that because you will love forever the hairstylist who probably saved your life – even if you did end up uninsurable for the duration of that life in the process.
diarist’s note: Yeah, ok, this is my story. If you are annoyed by my writing it entirely in the second person, please be advised that I did it deliberately, because, quite frankly, this could be you.
Anyone can be uninsurable in America.
In about as much time as it takes to get your hair done.
I’m not looking for sympathy here – I’m alive and not everyone manages to survive the insurance fiasco that masquerades as “care” in our country. Besides, I’m so stubborn I’m planning on living until I’m old enough for Medicare. So I’d like to direct your sympathy to those who are still alive, but may not make it through another decade of having their “care” rationed by the insurance company accountants.
I know I’m not exactly breaking news here, so please, do not tip, do not rec, go directly to your friends and neighbors and explain to them that their medical care is a disaster waiting to happen, give them their congressperson and senator’s contact info and get them to call or e-mail.
Anyway, read this and weep, folks, because even if you are healthy now, you won't stay that way forever, and eventually, you, too, will have outrageous medical bills.
How I lost my health insurance at the hairstylist’s « The Progressive Fox
Source: www.progressivefox.com
by Downtowner, posted on Tuesday, July 7th, 2009 at 10:35 pm
So you’re chugging along doing all the things you do as a responsible citizen, you work, and pay your bills and your taxes, you are there for your children, and fighting for your marriage, you even volunteer. It’s spring, 1998, and gradually you just become so tired it’s a struggle merely to climb a flight of stairs.
Oh, well, you do have two daughters in college, another nearing the end of her senior year in high school, a son in middle school, a full-time job, a house to take care of, are back in college, and have two dogs, two cats, and oodles and oodles of marital strain.
Fatigue sort of goes with the territory, and like many working moms, you just push past it. You get up, you get the family off in various directions, you go to work, you go to class, you cook dinner, you help with homework, go to games and track meets, do housework, set boundaries for the two kids at home and field frequent counseling-like calls from the two who are not, you try to work through problems with your husband, and you collapse exhausted into bed, get up the next day, and do it all over again – it’s a routine you dare not interrupt with reflections on your fatigue – there is no time.
Then one day…
You show up two weeks later than you should have to the hairstylist (pretty common when you are constantly pressed for time) and instead of the usual lecture about the color of your roots, she turns you around in the chair and says:
“I look at people’s skin tones all day long and try to decide the best coloring for their hair, and I can tell you this: gray is not a normal human skin tone. Get out of here right now and go see your doctor.”
For some reason, though she is not the first person to note you don’t look your best lately, this is the one thing that manages to penetrate the fatigue-fog and you do as you are told.
You call on the way, check in, sit down in the crowded waiting room resigned to waiting for a couple of hours, and a mere minute later the doctor, passing by the glassed in sliding windows on the other side of the wall catches sight of you, comes out, and demands to know: “How did you get so anemic?” You say, “I am?” He says, “Come with me right now” takes your hand and drags you back to an examining room.
Later that day, at the oncologist/hematologist office, this new strange doctor takes blood, orders up an outpatient transfusion, tells you that you no doubt have acute myelogenous leukemia, could keel over dead at any moment as long as you are untreated, and should now go home and call him the very minute the HMO calls you and tells you to check into some local hospital or the other – but should on no account whatsoever check into that local hospital.
You find this direction to avoid hospitalization confusing, in light of the “keel over dead untreated” stuff and say so. Whereupon oncologist/hematologist guy says HMO will try to check you into local or even regional hospital – because it’s cheaper – but in his opinion no local or regional hospital should be treating leukemia, since cure rates double in large teaching institutions. Risk of keeling over dead while he is arguing for your life with HMO is less than risk of dying in local hospital. Then he writes you a list of five hospitals in Chicago that you can allow yourself to be checked into, and says if it’s one of these ok, but it won’t be, so call me when they tell you to go to a local hospital.
Sure enough, he’s right; they do, the very next day. You call him. He works some magic you know naught of (though local rumor tells you later that he informed HMO that he will be sure to make himself available to testify at your spouse’s wrongful death suit later) and you get the referral to the large teaching institution later that day.
Telling your children…no, you won’t write the details here, beyond saying that especially for someone who lost a parent at the age of eleven, it’s the hardest thing you’ve ever done to try to be honest about the prognosis (which is grim) but reassuring about your love for them and intent to fight for your life.
Skip ahead then. On your first day in large teaching institution, you are visited by a social worker, who surprises you by demanding to know not the details of your home life, or about your state of mind on being diagnosed with a more-lethal-than-not form of cancer, but simply: “Who is carrying your insurance, you or your husband?”
You think this is rather cold for a social worker and inform her somewhat frostily that you are sure the bill will be taken care of – it’s pre-approved.
Social worker looks at you with what you interpret as pity and says it’s really, really important. So you say, spouse, as you work for small non-profit that offers no benefits, but also admit to her that you think marriage is for sure doomed now.
“Good, good!” she says.
And you wonder why, why, on top of extra-lethal form of cancer, must you also get unbalanced social worker?
She must be able to tell from your expression that you think she’s nuts, because she explains, like so:
If you worked for a company that offered insurance, if you carried your family’s insurance, next year your insurer would slap a million dollar surcharge on the company policy for carrying a leukemia patient. The company would get the bill and someone in accounting would question “what is this extra million dollars we are being billed?”
The insurance company would explain to them that the million is for you, and it is yearly, but is, ahem, “fixable.” They will say “as long as she is on your insurance (wink, wink) this charge will be there. So what you have to ask yourself (more wink, wink) is whether this employee is worth a million dollar a year salary on top of what you are already paying her.”
Social worker said she had seen small business owners go almost broke trying to cover this charge, and had even heard of one who defiantly did go broke, throwing all of the employees out of work. But more usually, she said, they just fire you.
“Wait, wait!” say you, “Isn’t it illegal to fire someone for their health history? Suppose I’m all well and working?”
She looks at you with more pity, says yes, so of course they will have to find “cause” to fire you, which any employer can always do.
“But I am a very, very good employee!” you protest.
“Yes,” she says, “but they can always find some cause.” The real problem she goes on to explain, is that you will find a new job, that company’s insurer will slap them with the surcharge, they will take their turn at firing you, until you’ve been through six or seven jobs in a year, fired “for cause” from all of them, which of course looks very, very bad to a prospective employer.
“So in a year or so of this, you will not just be uninsurable, you will also be unemployable.”
She asks who your husband works for, since they’d probably try to do this to him too. You say he is a cop working for a municipality, which pleases her. “They have all sorts of layers of officials, elected and otherwise, to work their way through to get to the decision, then once they do they have to get past his union, so it will take much longer to get him fired.” She also, though, offered sympathy for the fact that what with the police union and the municipality fighting out whatever “cause” they got him on in such a public profession, it was sure to end up in the local papers and disrupt all our lives – including the children’s – when they did get that far.
You remind her you seem headed for divorce, and she says, well, okay then, just carry the COBRA to the limit and keep on working for small not-for-profits that don’t offer insurance.
You ask her what you are supposed to do for health care and she says sooner or later the insurance companies would force you onto Medicaid – either by means of making you unemployable and broke, or by means of you being uninsured and going through any and all assets you have paying medical bills until you are broke and sick enough that you can’t work, and end up on Medicaid.
You are rather horrified, but have other things (like trying to stay alive and simultaneously on top of what your teenage children are up to from the hospital many miles away) on your mind, and besides, this all seems so uncivilized and melodramatic and “worst case scenario” and…unlikely, somehow, so you set this aside for now.
You live. In fact you are cured!
A year later you are divorced. You are struggling to get by as a single mother, and you are making the COBRA payments.
Your ex comes by to pick up your son and tells you that the municipality he works for’s administrator told him in absolute shock that the insurance company slapped a million dollar surcharge on the municipality’s insurance policy, and said it would go on yearly until you are off, but since you had exercised your right to COBRA it would “do no good” if your ex was gone. The administrator said he was so shocked and offended that he went to ALL the other carriers possible, and one by one they all gave him back a “no bid” with the proviso that they would welcome the opportunity to bid…just as soon as that leukemia patient’s COBRA rights expire. So barring leaving all the municipality’s employees naked of insurance they were absolutely trapped.
Social worker begins to seem less melodramatic to you.
Your COBRA rights expire.
You go on ICHIP, the program for uninsurable Illinoisans. It’s easy, because your disease is on the short-list of twelve or so that automatically render you “uninsurable for life.” You discuss the horrible policy benefits with your car insurance agent – who is also a trusted friend. She tells you she is also on ICHIP (though it was much harder for her to get on it - she had to get three denials from private insurers) and the entire benefit it provides is to “get you through the door of a hospital” since if you really do get ill you will get benefits so minimal that you will be forced to pay the vast majority of the bills until you are bankrupt and forced onto Medicaid.
Social worker begins to seem downright reasonable to you.
The day comes when you weigh the many, many hundreds of dollars you are paying on a monthly basis, through ICHIP, but to the very insurance company that once charged your ex’s employer a million dollars (coincidentally, the exact bill for your treatment over your year of leukemia fell just short of that million, by about ten dollars, so this company was out exactly nothing) of what is starting to smell like blood money, against your daughters continuing in college and your son eating on a regular basis.
You get a second job.
Your daughter gets sick with Type I Diabetes while uninsured and you weigh those hundreds of dollars to the insurer you now thoroughly detest and you drop that insurance and buy her insulin and syringes and test strips and trips to the doctor instead. You are now so broke that if you would just give up and quit your two jobs and collapse already you are certain you would qualify for Medicaid. But you are stubborn and you go to work.
Your mother – who though she has been a strict vegetarian since birth has very high cholesterol that will not respond to diet and who has been on high blood pressure medication for decades - survives her third heart attack and you consider the fact that your father died at 39 of a heart attack and you think that probably you are not far away from one yourself.
Your oldest sister says while visiting Mom at the hospital that she has been on high blood pressure and cholesterol medication for a decade too.
Your nearest-in-age sister, also a strict vegetarian, goes to get her cholesterol checked and sure enough is placed on high cholesterol and high blood pressure medication. She is also diagnosed as almost completely deaf in her left ear, as your father was at a very young age, and as you suspect you are too. She gets a miniscule hearing aid. You are careful to not put the phone to your bad ear.
Your little brother is diagnosed with cholesterol that doesn’t go down in response to a diet (you get hilarious stories about your sweet and gentle sister-in-law’s brutal enforcement of said diet) and high blood pressure. He goes on medication.
You go to the drug store and test your blood pressure when you wake up with the blood pounding in your ears one day and, sure enough, it’s crept up to high borderline. You try a myriad of things and finally hit on running every day and cutting all of the salt out of your diet to get it to the high end of “normal.” You check it once a week.
You struggle – much – with your weight and the overwhelming need for naps and your ridiculously dry skin and your thinning hair. Your late-twenties daughter, who has just been diagnosed with a completely non-functioning thyroid gland, goes on thyroid medication and lectures you that these are all exactly her symptoms, so you should get your thyroid checked. You know it, and are aware (as your daughter is not) that your mother and sisters have all also been on thyroid medication for years, but you can’t afford it – or the regular doctor visits and monitoring that go with it.
You go to coffee with your friends. They have not had an easy time of it lately with their own and their husbands’ health. In fact, it’s been a horrible couple of years. Your heart bleeds for them and you can think of no words sufficient to describe their courage and grace. And yet sometimes you feel jealous that they have access to medical care, and then you just feel guilty and small-minded, because they need this care, and they are wonderful, wonderful people who have worked hard for the lives they’ve built and who give much back to their communities.
But still…you hear about one friend’s breast cancer, and you remember that your oncologist/hematologist warned you that all leukemia patients who survive eventually die of some form of cancer – because the chemo drugs are “the strongest carcinogens, in the strongest doses, known to man.” And you remember that your maternal grandmother died of ovarian cancer, and your nearest-in-age sister was successfully treated for ovarian cancer at the age of 24. But you know you can’t afford a tenth of the screenings you should be having on an annual basis – not even once.
Or you hear about a husband’s heart surgery and you think you might well need that one too – your mother, her sister, and one of your own have all had that particular surgery. But since you can’t afford the surgery, you don’t bother to try to have the tests you can’t afford either.
You don’t go get your hair done any more. You can’t afford it. So you do it yourself.
But you mostly fret about that because you will love forever the hairstylist who probably saved your life – even if you did end up uninsurable for the duration of that life in the process.
diarist’s note: Yeah, ok, this is my story. If you are annoyed by my writing it entirely in the second person, please be advised that I did it deliberately, because, quite frankly, this could be you.
Anyone can be uninsurable in America.
In about as much time as it takes to get your hair done.
I’m not looking for sympathy here – I’m alive and not everyone manages to survive the insurance fiasco that masquerades as “care” in our country. Besides, I’m so stubborn I’m planning on living until I’m old enough for Medicare. So I’d like to direct your sympathy to those who are still alive, but may not make it through another decade of having their “care” rationed by the insurance company accountants.
I know I’m not exactly breaking news here, so please, do not tip, do not rec, go directly to your friends and neighbors and explain to them that their medical care is a disaster waiting to happen, give them their congressperson and senator’s contact info and get them to call or e-mail.
Wednesday, July 1, 2009
Back in Action at WIO
Well, I am back to working out after getting the green light from both my surgeon and gastroenterologist after two weeks of recovery, now three.
My belly has healed faster than any of the doctors thought it would, so I've been attempting to walk at least 2 miles once a week and going to at least 3 classes at Work It Out, though I've been admonished to be very careful about any bouncing, jumping, bending over or abdominal exercises that could pull open my internal or external stitches.
I'm also not allowed to lift more than 5 pounds, which has been tough, as I was up to 10 pounds previously, and I used the 8 pound weights for the small muscle exercises.
Now that the new schedule is in place at WIO, there are more classes in the evening involving weights, like the much-missed balls and weights class, so I should be gaining back some lost muscle mass from my surgical 'vacation' from exercise. I do miss NIA (non-impact aerobics) class and the lovely Mary Jo, whose mantra that we should all love our bodies just as they are provided a welcome respite from my inner body Nazi, the one who fumes in disgust at the fact that I actually gained weight while not eating anything in the hospital. Once I was at home and subsisting only on clear liquids, I assumed then that I would lose a few pounds, but no, my body clung to its fat cells like a Titanic passenger to a lifeboat. Hence, I am no better off, pound wise, than I was when I entered the hospital on June 5. Dang it!
My dear gastro doc has decided not to put me back on my Crohn's meds, mainly because Imuran would slow my healing process to a crawl, and he wants me to be completely healed and healthy, without any serious inflammation or flares, before we start back on medications to keep further strictures and lesions from developing on my guts. He's planning on doing a colonoscopy and endoscopy in late August or early September to see how clean and clear my intestines really are, and ten taking the drug question from there. Meanwhile, though, I have to take fiber supplements and take percoset for pain when I have it from my incision or from a 'flare' when I eat something, like a hamburger, that blasts through me like a hot knife through butter, or rather a porcupine through a greased tube, which is how it feels. I really dislike taking pain meds, because they make me groggy and sleepy, and because they're supposedly addictive and constipating, neither something I like contemplating.
But, as my life is all about compromise, negotiating and patience these days, I'm dealing with it all as best I can, and trying not to stress about my lack of career, lack of money and lack of options.
I've come to realize that I am adequate at most things, only after a steep learning curve, and that I really only excel at reading and befriending people. I don't think there are a lot of jobs left out there for someone who likes people and likes books, other than a bookstore owner, which is something I'd love to do if I won the lottery anytime soon. Baring a sudden influx of money, its nothing but a dream.
Meanwhile, being a writer is becoming more and more like being a starving artist. I'm a real dinosaur, as a print journalist, because no one is paying print journalists to write articles anymore...you're supposed to write for free on some web site supposedly for the love of news. Unfortunately, the love of news or reaching your community with stories about local business is a noble goal that doesn't pay the thousands I owe in medical bills alone. There's no place left for average reporters like myself who can churn out some good stories and occasionally a great one or three.
So that leaves me as a stay at home mom for the summer, one with a new scar and a still-upholstered belly that stubbornly refuses to deflate. But if there's one other thing I am good at, it's being persistent, dogged even, in pursuit of a goal. And I have an optimistic streak of faith and hope that refuse to leave me, even in my darkest hours. If I might, I'd like to ask anyone reading this for prayers. Any good and hopeful prayer for my family's health, wealth or wisdom would be most appreciated, and it's guarenteed to get you brownie points in the good karma derby that is life.
Thank you.
My belly has healed faster than any of the doctors thought it would, so I've been attempting to walk at least 2 miles once a week and going to at least 3 classes at Work It Out, though I've been admonished to be very careful about any bouncing, jumping, bending over or abdominal exercises that could pull open my internal or external stitches.
I'm also not allowed to lift more than 5 pounds, which has been tough, as I was up to 10 pounds previously, and I used the 8 pound weights for the small muscle exercises.
Now that the new schedule is in place at WIO, there are more classes in the evening involving weights, like the much-missed balls and weights class, so I should be gaining back some lost muscle mass from my surgical 'vacation' from exercise. I do miss NIA (non-impact aerobics) class and the lovely Mary Jo, whose mantra that we should all love our bodies just as they are provided a welcome respite from my inner body Nazi, the one who fumes in disgust at the fact that I actually gained weight while not eating anything in the hospital. Once I was at home and subsisting only on clear liquids, I assumed then that I would lose a few pounds, but no, my body clung to its fat cells like a Titanic passenger to a lifeboat. Hence, I am no better off, pound wise, than I was when I entered the hospital on June 5. Dang it!
My dear gastro doc has decided not to put me back on my Crohn's meds, mainly because Imuran would slow my healing process to a crawl, and he wants me to be completely healed and healthy, without any serious inflammation or flares, before we start back on medications to keep further strictures and lesions from developing on my guts. He's planning on doing a colonoscopy and endoscopy in late August or early September to see how clean and clear my intestines really are, and ten taking the drug question from there. Meanwhile, though, I have to take fiber supplements and take percoset for pain when I have it from my incision or from a 'flare' when I eat something, like a hamburger, that blasts through me like a hot knife through butter, or rather a porcupine through a greased tube, which is how it feels. I really dislike taking pain meds, because they make me groggy and sleepy, and because they're supposedly addictive and constipating, neither something I like contemplating.
But, as my life is all about compromise, negotiating and patience these days, I'm dealing with it all as best I can, and trying not to stress about my lack of career, lack of money and lack of options.
I've come to realize that I am adequate at most things, only after a steep learning curve, and that I really only excel at reading and befriending people. I don't think there are a lot of jobs left out there for someone who likes people and likes books, other than a bookstore owner, which is something I'd love to do if I won the lottery anytime soon. Baring a sudden influx of money, its nothing but a dream.
Meanwhile, being a writer is becoming more and more like being a starving artist. I'm a real dinosaur, as a print journalist, because no one is paying print journalists to write articles anymore...you're supposed to write for free on some web site supposedly for the love of news. Unfortunately, the love of news or reaching your community with stories about local business is a noble goal that doesn't pay the thousands I owe in medical bills alone. There's no place left for average reporters like myself who can churn out some good stories and occasionally a great one or three.
So that leaves me as a stay at home mom for the summer, one with a new scar and a still-upholstered belly that stubbornly refuses to deflate. But if there's one other thing I am good at, it's being persistent, dogged even, in pursuit of a goal. And I have an optimistic streak of faith and hope that refuse to leave me, even in my darkest hours. If I might, I'd like to ask anyone reading this for prayers. Any good and hopeful prayer for my family's health, wealth or wisdom would be most appreciated, and it's guarenteed to get you brownie points in the good karma derby that is life.
Thank you.
Thursday, June 11, 2009
Restless Recovery
Well, mine upholstered belly has been reupholstered and is now purple/green bruised and battered looking, with a wicked scar on the right hand side, but slowly healing up just fine.
There were numerous heparin shots every 8 hours that left tiny dots of violet across the adipose expanse that look like weird freckles, and there are two big bruises, one on either side, I assume from bumping into things while dragging my IV pole full of antibiotics and morphine around during those first couple of days after surgery.
Virginia Mason Hospital's 15th floor, where I landed because they had no beds elsewhere, is an oncology (cancer) unit, yet it was the most positive, warm and comforting hospital room I've ever stayed in, and my roomate Eileen, who was actually a cancer patient, would, I think, agree with me. Eileen had also had her abdomen slashed open, to remove 3 tumors in different spots, and bless her, she took the pain, Foley catheter and bloating of the bowel all in calm, even tempered stride, never raising her lovely voice and always being gracious, courteous and generous to all she encountered. For example, I am sure that I snore, though not loudly, when I sleep on my back, as I had to do once I was brought up from recovery. Eileen never once growled at me about my nocturnal grring, nor did she complain about my Miralax induced crawls to the toilet in the middle of the night.
The nurses and the medical technicians (or techs as they now call nurses aids) were wonderful, professional yet compassionate, concerned and consistently ready to help if you were in pain, needed a bath, wanted a fresh robe or were just in need of a kind face after a benadryl-induced nightmare. Monica and Jenny and the whole staff encouraged me to continue my attempts at meandering down the hall, though I was groggy and dizzy from the pain meds and aching in my newly-unstable core. They never laughed at my feeble attempts at bending over to pick up something I'd dropped, or at my cumbersome way of getting into and out of bed.
When my IV port infiltrated and started to burn like someone had dropped a burning coal on my forarm, a day shift nurse and a resident were quick to remove the old port and put in a new one without any pain suffered at all.
Dr T's residents both were helpful, but one in particular was kind enough to get me off the morphine drip and out of the Foley catheter nightmare, which was a godsend and made me feel light and unencumbered for the first time in 3 days. He got me on to ibuprofen and percoset ASAP, so I could head home and free up a much-needed bed for other surgery patients who were beginning to stack up in the hallways on gurneys.
Dr T explained to me that my surgery had taken a mere 90 minutes, and that I had the 'longest appendix' he'd ever seen, which had wrapped around some of my other organs and which he happily removed like a bad weed from my body. He allowed me a full liquid diet the day after I came out of the OR, and I was able to have juice and popcicles and even soymilk while I was at VM, something I'd not expected.
Now that I am home and almost a week out of my surgery, I am still on a mostly liquid and all soft foods diet, with a dollop of Miralax every morning to make sure things go through. I am hoping to quit taking the laxative this weekend and get back to regular bathroom times now that I feel my intestines are healing up. I did attend a book group meeting Tuesday night, and yes, I had to have help getting up and down out of the car and into the chair, but I felt it was well worth it to see all my book peeps. Plus I spent Wednesday in bed, being very careful not to strain or pull my stitches, just for good measure.
Today I had my son lug the vacuum upstairs so I could vacuum the upper half of the house, which was a filthy mess when I got home (this is a whole 'nother topic, but why can't men clean? Why can't they see the dirt and germs right in front of them? Can't they smell a bathroom in need of a good scrubbing? Why not?). Now I am hoping to take a walk this afternoon and have my dear neighbor and friend Janine over for a chin wag of some sort before Nick gets home.
I don't think that I lost much weight while only drinking fluids, because I wasn't getting any exercise to go along with the sugar calories I was consuming, though there wasn't much of them. Still, with any luck I will be walking Witte Road and back next week, or at least walking Lake Wilderness Trail and trying to get back on my feet with my weight loss program, though I don't think I will be able to eat protein until the last week of June at least.
But I have been told I'm not to take any of my Crohns medications until I see my gastro doc and get the okay from my surgeon, who tells me that the rest of my intestines looked clean and healthy, from what he could see. Maybe I won't have to take expensive Crohns meds anymore...wouldn't that be a treat?!
Wish me luck and sending healing waves to me whenever you're ready!
There were numerous heparin shots every 8 hours that left tiny dots of violet across the adipose expanse that look like weird freckles, and there are two big bruises, one on either side, I assume from bumping into things while dragging my IV pole full of antibiotics and morphine around during those first couple of days after surgery.
Virginia Mason Hospital's 15th floor, where I landed because they had no beds elsewhere, is an oncology (cancer) unit, yet it was the most positive, warm and comforting hospital room I've ever stayed in, and my roomate Eileen, who was actually a cancer patient, would, I think, agree with me. Eileen had also had her abdomen slashed open, to remove 3 tumors in different spots, and bless her, she took the pain, Foley catheter and bloating of the bowel all in calm, even tempered stride, never raising her lovely voice and always being gracious, courteous and generous to all she encountered. For example, I am sure that I snore, though not loudly, when I sleep on my back, as I had to do once I was brought up from recovery. Eileen never once growled at me about my nocturnal grring, nor did she complain about my Miralax induced crawls to the toilet in the middle of the night.
The nurses and the medical technicians (or techs as they now call nurses aids) were wonderful, professional yet compassionate, concerned and consistently ready to help if you were in pain, needed a bath, wanted a fresh robe or were just in need of a kind face after a benadryl-induced nightmare. Monica and Jenny and the whole staff encouraged me to continue my attempts at meandering down the hall, though I was groggy and dizzy from the pain meds and aching in my newly-unstable core. They never laughed at my feeble attempts at bending over to pick up something I'd dropped, or at my cumbersome way of getting into and out of bed.
When my IV port infiltrated and started to burn like someone had dropped a burning coal on my forarm, a day shift nurse and a resident were quick to remove the old port and put in a new one without any pain suffered at all.
Dr T's residents both were helpful, but one in particular was kind enough to get me off the morphine drip and out of the Foley catheter nightmare, which was a godsend and made me feel light and unencumbered for the first time in 3 days. He got me on to ibuprofen and percoset ASAP, so I could head home and free up a much-needed bed for other surgery patients who were beginning to stack up in the hallways on gurneys.
Dr T explained to me that my surgery had taken a mere 90 minutes, and that I had the 'longest appendix' he'd ever seen, which had wrapped around some of my other organs and which he happily removed like a bad weed from my body. He allowed me a full liquid diet the day after I came out of the OR, and I was able to have juice and popcicles and even soymilk while I was at VM, something I'd not expected.
Now that I am home and almost a week out of my surgery, I am still on a mostly liquid and all soft foods diet, with a dollop of Miralax every morning to make sure things go through. I am hoping to quit taking the laxative this weekend and get back to regular bathroom times now that I feel my intestines are healing up. I did attend a book group meeting Tuesday night, and yes, I had to have help getting up and down out of the car and into the chair, but I felt it was well worth it to see all my book peeps. Plus I spent Wednesday in bed, being very careful not to strain or pull my stitches, just for good measure.
Today I had my son lug the vacuum upstairs so I could vacuum the upper half of the house, which was a filthy mess when I got home (this is a whole 'nother topic, but why can't men clean? Why can't they see the dirt and germs right in front of them? Can't they smell a bathroom in need of a good scrubbing? Why not?). Now I am hoping to take a walk this afternoon and have my dear neighbor and friend Janine over for a chin wag of some sort before Nick gets home.
I don't think that I lost much weight while only drinking fluids, because I wasn't getting any exercise to go along with the sugar calories I was consuming, though there wasn't much of them. Still, with any luck I will be walking Witte Road and back next week, or at least walking Lake Wilderness Trail and trying to get back on my feet with my weight loss program, though I don't think I will be able to eat protein until the last week of June at least.
But I have been told I'm not to take any of my Crohns medications until I see my gastro doc and get the okay from my surgeon, who tells me that the rest of my intestines looked clean and healthy, from what he could see. Maybe I won't have to take expensive Crohns meds anymore...wouldn't that be a treat?!
Wish me luck and sending healing waves to me whenever you're ready!
Friday, May 22, 2009
Surgery is Scheduled
Well, it looks like the upholstered belly is going to undergo some rennovation soon, as I'm on for illeocecectomy (they remove the stricture between my colon and small intestine and sew/staple the ends together) on June 5 at Virginia Mason Hospital.
I tried to run the idea of having the surgeon, Dr T, do a little liposuctin while he was in there, just about 15 pounds or so off the omentum, but no, he said 'nice try' and left it at that. Sigh.
Dr T is taking out my appendix at the same time, though, and said that I should plan on being in the hospital for 3-4 days, so I am not going to be shuffled home too quickly, and I will probably have at least 4 weeks of recovery, not something I'm looking forward to, as I had 6 weeks of recovery after my c-section and I was ready to go back to work after 4 weeks.
But I do know that I've got 2 years of exercise, weight training and two boot camps behind me, so I won't have to start over when I finally do go back to classes at WIO.
Because I won't be eating anything for two weeks after surgery (just drinking clear liquids after the first week of IV only) I imagine the 6 pounds I gained due to cortisone, required to reduce inflammation after my obstruction, will come back off posthaste. I am planning on losing at least 15 pounds, if not more while I recover, so there is one advantage to having your guts torn out.
I also have a lovely stack of 16 books that I can read through while I wait for my belly to heal. I'm looking forward to the eyestrain.
I must say that since I've been off the carb rotation diet I've been happy to eat soft, bland foods, but not thrilled to have to pass by any raw fruits or vegetables, beef, pork and no hot dogs. I love hot dogs, and I miss them. I look forward to having one on the 4th of July this year, when hopefully my gut will be healed enough to allow me to eat protein in a tube again. I also plan to down quantities of watermelon and perhaps even a hamburger with extra pickles, if I am feeling daring.
Wish me luck.
I tried to run the idea of having the surgeon, Dr T, do a little liposuctin while he was in there, just about 15 pounds or so off the omentum, but no, he said 'nice try' and left it at that. Sigh.
Dr T is taking out my appendix at the same time, though, and said that I should plan on being in the hospital for 3-4 days, so I am not going to be shuffled home too quickly, and I will probably have at least 4 weeks of recovery, not something I'm looking forward to, as I had 6 weeks of recovery after my c-section and I was ready to go back to work after 4 weeks.
But I do know that I've got 2 years of exercise, weight training and two boot camps behind me, so I won't have to start over when I finally do go back to classes at WIO.
Because I won't be eating anything for two weeks after surgery (just drinking clear liquids after the first week of IV only) I imagine the 6 pounds I gained due to cortisone, required to reduce inflammation after my obstruction, will come back off posthaste. I am planning on losing at least 15 pounds, if not more while I recover, so there is one advantage to having your guts torn out.
I also have a lovely stack of 16 books that I can read through while I wait for my belly to heal. I'm looking forward to the eyestrain.
I must say that since I've been off the carb rotation diet I've been happy to eat soft, bland foods, but not thrilled to have to pass by any raw fruits or vegetables, beef, pork and no hot dogs. I love hot dogs, and I miss them. I look forward to having one on the 4th of July this year, when hopefully my gut will be healed enough to allow me to eat protein in a tube again. I also plan to down quantities of watermelon and perhaps even a hamburger with extra pickles, if I am feeling daring.
Wish me luck.
Tuesday, April 21, 2009
The Near Belly Blow Out, Or How I Survived My First Obstruction
Oh, it is excellent to have a giant's strength; but it is tyrannous to use it like a giant. -William Shakespeare, playwright and poet (1564-1616)
I just love that quote, so I decided to put it here just because it's true, and it's Willie.
The other housekeeping I need to get out of the way is to post this URL for a marvelous article from the NYT on the intrinsic value of friendship. I sincerely believe that if I didn't have the great circle of friends I currently maintain, I'd have been a dead old badger last week when my colon nearly blew up.
http://www.nytimes.com/2009/04/21/health/21well.html
Now, to the task at hand--the tale of my terrible intestines.
For the last two weeks I've been feeling bloated and constipated, and yet somehow fiber didn't seem to be having it's usual laxative effect on me. So I tempted fate and decided to try eating things like oatmeal, raisins, dates, figs, red pepper hummus, broccoli and caffeinated teas, things I usually avoid because they tether me to the toilet.
Not so, though, for the last 10 days, so I grew bold and didn't worry when I wasn't going to the bathroom at all...and my belly bloated out like I was 7 months pregnant.
I did have some pain Monday and Tuesday, and noticed that I had lots of acid reflux at night, but I figured that some OTC Pepcid would take care of that.
Wednesday I felt awful all day...pain, bloating, burping and nausea dogged me. By nightfall, I felt horrible, with stomach cramps, a burning throat, lots of gas that wasn't going anywhere and nausea that had me dry heaving into the night, and even after taking a percoset, the pain just continued to get worse. I started throwing up in earnest in the wee hours of the morning, and by 7 a.m. the pain was intolerable. I went in to wake up the huz and tell him I needed to get to a hospital.
I was hoping that he'd just let me ride in the car to the ER, but instead he called the EMTs who insisted on taking me to the nearest hospital (one that my gastroenterologist has no privileges at, unfortunately) in Auburn, while I was sobbing and screaming in pain by the time I arrived. They gave me tons of pain meds and then admitted me, stuck an NG (naso-gastric) tube down my nose to my stomach, and started pumping out all the food and liquid that had backed up from my intestines all week.
It seems that the stricture that I have in my terminal illeum, right where my colon, or large intestine, meets my small intestine, had gotten fed up with all the fiber and irritation and it swelled shut, along with the inflamed intestinal tissue around it, causing a partial obstruction that wouldn't allow waste material to pass through to my colon. I was in so much pain, I felt as if my intestines would rupture. There were waves of excruciation that begger the imagination to properly describe.
There is a special level of purgatory for having your guts sump-pumped over a 30 hour period. The tubes are clear so you get to watch all this grotesque green and brown stuff empty into a container on the wall, and the pump itself sounds like Darth Vader's respirator. The tube was pressed against a nerve in my nose that made my sinuses and teeth ache, and my 92-year-old room mate snored like a buzz saw most of the night, so I got little sleep.
Still, after pumping me full of solumedrol (cortisone that is put through an IV) to get the swelling down enough so I could defecate, even a little, they allowed me to go home after three days with a promise of taking another weeks worth of steroids and eating only baby food, clear liquids and no meat. Unfortunately, in my weakened state, I didn't ask the admitting doc if I could have delicate fish, like Dover sole, or very tender bits of chicken breast meat.
So I've been living on chicken broth and soda crackers, applesauce and rice cereal with soymilk and today I decided to live dangerously and have elbow pasta with babyfood turkey and squash over it, to make it look like mac and cheese when there wasn't any dairy anywhere near it. Yesterday I pushed the envelope by consuming a mini-baguette with dairy-free margerine and jam with a cup of herbal tea. I think it was too much, though, because during the fabulous new NIA class at WIO, I started to have gut pain again, and had to take half a percoset when I got home.
I hate taking steroids, as they always make me hyper and ravenous, and I have all the unwanted side effects that come with this 'miracle' anti-inflammatory. I need to get all the swelling down in my guts, though, because the surgeon at Auburn said they won't do any stricture-removal until the inflammation is all gone, and my gut is calm, not in flare mode. Sigh. Hopefully I won't gain more than 4-5 pounds from this, so I won't have to spend months trying to get it back off again once my body is back to normal, or normal for me, anyway.
I have learned something through all this, though. About myself and my appetites, about my wonderful and supportive circle of friends, and my best beloved family, Jim and Nick, Mom, Dad, Lloyd and, amazingly enough, my brother Kevin.
You all ROCK. And I could not have made it through this health crisis without you.
I know, from the CCFA Patient Education Conference and my own research, that 75 percent of Crohns patients have surgery in the first 10-12 years after diagnosis. So I guess I was due. I just wasn't ready for the debilitaing pain, and the aftermath of my favorite deadly sin, gluttony.
I just love that quote, so I decided to put it here just because it's true, and it's Willie.
The other housekeeping I need to get out of the way is to post this URL for a marvelous article from the NYT on the intrinsic value of friendship. I sincerely believe that if I didn't have the great circle of friends I currently maintain, I'd have been a dead old badger last week when my colon nearly blew up.
http://www.nytimes.com/2009/04/21/health/21well.html
Now, to the task at hand--the tale of my terrible intestines.
For the last two weeks I've been feeling bloated and constipated, and yet somehow fiber didn't seem to be having it's usual laxative effect on me. So I tempted fate and decided to try eating things like oatmeal, raisins, dates, figs, red pepper hummus, broccoli and caffeinated teas, things I usually avoid because they tether me to the toilet.
Not so, though, for the last 10 days, so I grew bold and didn't worry when I wasn't going to the bathroom at all...and my belly bloated out like I was 7 months pregnant.
I did have some pain Monday and Tuesday, and noticed that I had lots of acid reflux at night, but I figured that some OTC Pepcid would take care of that.
Wednesday I felt awful all day...pain, bloating, burping and nausea dogged me. By nightfall, I felt horrible, with stomach cramps, a burning throat, lots of gas that wasn't going anywhere and nausea that had me dry heaving into the night, and even after taking a percoset, the pain just continued to get worse. I started throwing up in earnest in the wee hours of the morning, and by 7 a.m. the pain was intolerable. I went in to wake up the huz and tell him I needed to get to a hospital.
I was hoping that he'd just let me ride in the car to the ER, but instead he called the EMTs who insisted on taking me to the nearest hospital (one that my gastroenterologist has no privileges at, unfortunately) in Auburn, while I was sobbing and screaming in pain by the time I arrived. They gave me tons of pain meds and then admitted me, stuck an NG (naso-gastric) tube down my nose to my stomach, and started pumping out all the food and liquid that had backed up from my intestines all week.
It seems that the stricture that I have in my terminal illeum, right where my colon, or large intestine, meets my small intestine, had gotten fed up with all the fiber and irritation and it swelled shut, along with the inflamed intestinal tissue around it, causing a partial obstruction that wouldn't allow waste material to pass through to my colon. I was in so much pain, I felt as if my intestines would rupture. There were waves of excruciation that begger the imagination to properly describe.
There is a special level of purgatory for having your guts sump-pumped over a 30 hour period. The tubes are clear so you get to watch all this grotesque green and brown stuff empty into a container on the wall, and the pump itself sounds like Darth Vader's respirator. The tube was pressed against a nerve in my nose that made my sinuses and teeth ache, and my 92-year-old room mate snored like a buzz saw most of the night, so I got little sleep.
Still, after pumping me full of solumedrol (cortisone that is put through an IV) to get the swelling down enough so I could defecate, even a little, they allowed me to go home after three days with a promise of taking another weeks worth of steroids and eating only baby food, clear liquids and no meat. Unfortunately, in my weakened state, I didn't ask the admitting doc if I could have delicate fish, like Dover sole, or very tender bits of chicken breast meat.
So I've been living on chicken broth and soda crackers, applesauce and rice cereal with soymilk and today I decided to live dangerously and have elbow pasta with babyfood turkey and squash over it, to make it look like mac and cheese when there wasn't any dairy anywhere near it. Yesterday I pushed the envelope by consuming a mini-baguette with dairy-free margerine and jam with a cup of herbal tea. I think it was too much, though, because during the fabulous new NIA class at WIO, I started to have gut pain again, and had to take half a percoset when I got home.
I hate taking steroids, as they always make me hyper and ravenous, and I have all the unwanted side effects that come with this 'miracle' anti-inflammatory. I need to get all the swelling down in my guts, though, because the surgeon at Auburn said they won't do any stricture-removal until the inflammation is all gone, and my gut is calm, not in flare mode. Sigh. Hopefully I won't gain more than 4-5 pounds from this, so I won't have to spend months trying to get it back off again once my body is back to normal, or normal for me, anyway.
I have learned something through all this, though. About myself and my appetites, about my wonderful and supportive circle of friends, and my best beloved family, Jim and Nick, Mom, Dad, Lloyd and, amazingly enough, my brother Kevin.
You all ROCK. And I could not have made it through this health crisis without you.
I know, from the CCFA Patient Education Conference and my own research, that 75 percent of Crohns patients have surgery in the first 10-12 years after diagnosis. So I guess I was due. I just wasn't ready for the debilitaing pain, and the aftermath of my favorite deadly sin, gluttony.
Subscribe to:
Posts (Atom)