Hey, Jude

I don't generally like to mix my personal blog with my day job life, as it's a good rule of thumb to keep the two separate. However, being somebody with a chronic illness that most folks get when they're kids, I have a soft spot for kids with chronic illnesses. I also have a blog that some people do, on occasion, read (especially when I'm ranting about Urban Fantasy, apparently).

My boss's son, Jude, has been suffering from an undiagnosed neurological condition that looks a lot like epilepsy - but all the tests have come back negative, and the drugs for epilepsy don't work. It sucks even more in this case because it's a kid, and it's tough for a kid to tell you what's wrong/what he's experiencing. They have spent many years, many doctors, and many, many dollars trying to figure out what's wrong with him and if there's anything they can do to help control his episodes. You all who've followed my frustrations over health insurance claims and benefits and dollars over the last four years may have some idea of what that's been like for them.

I know SF/F circles move in and out of health offices quite often, being the sorts of people prone to chronic conditions and terrible health (one of the reasons we turned to SF in the first place, come now).

Please take a look at Jude's story and pass it on if you're so inclined. Getting the latest cat picture to the top of Digg is all very well and good, but it's helping out people like this that is the real power of social media. Let's see if somebody knows somebody who knows somebody who can help.


You can contact David and/or learn more at his blog.

Half our cauliflowers appear to have been eaten by some kind of fungus, but these two turned out lovely, and we'll be turning them into a fine cauliflower mash tomorrow.

 And here's what our garden currently look like, after harvesting some peas, a tomato, two cauliflowers, and two broccoli (including harvest of broccoli florets after initial head harvest):

I've been growing more keenly aware of where my food comes from (and what it's actually made out of) the last couple of years. I grew up eating fast food. My parents both worked at a fast food company for 25 years. It was just... what you ate. It never occurred to me that you should eat any differently. I didn't spend much time in the produce aisle until I was 18 and interested in dropping some weight I'd put on while on the pill. Switching to fruits, vegetables, and protein meant dropping 60 lbs in about 6-8 months. It felt almost effortless.

I've read all the books - like Fast Food Nation, The Omnivore's Dilemma, In Defense of Food - and watched all the shows, like King Corn, Supersize Me, and Food, Inc.I know how we got here. And I know why.
These days, I work hard to eat well.

And, of course, that's just it - I have to work hard to eat well. Folks who haven't tried it really don't know just how tough it is. Fast food, prepared food, soda, crackers, canned soup, frozen meals... these are revolutionary, time saving victuals that make it possible to feed a tremendous number of people on a very small amount of land with 80% of the base made of up just one versatile commodity crop - corn.

And it's a blessing.

Yes, it's killing us prematurely, because we have no defense against a double bacon cheeseburger. It sets off all of our primitive pleasure centers. Why not eat them all day?

Because, of course, you'll die of malnutrition. But you'll keep doing it, and doing it, like a rat with a way to self-administer cocaine. Giving up carbs is really hard to do. Even before I was sick, I'd get the shakes, and intense cravings. Then there are the visual cues, which are constant. As somebody in marketing and advertising, I know just how helpless we can be in the face of $5.99 single-topping pizza specials, particularly when you're exhausted after work, haven't eaten in six hours, and are faced with the prospect of an hour's cooking time before food ingestion.

It's amazing that we can feed ourselves so cheaply and easily in this country. Try growing a garden. Try losing half your cauliflower crop to fungus, like we did. "It's a good thing we're not relying on any of this to feed ourselves," I told J. as I pulled out the cauliflower. Our little garden is just for fun. When we get a house with more land, we'll likely be able to feed more of ourselves with it, but even a "for fun" garden is disappointing when you discover half your land was wasted on crops that don't feed you.

As sympathetic as I am to the bullshit and poison that's ended up in our food, I'm also very much aware of how things were before cheap food. Farming is not a fun life. Food doesn't just roll out of the truck at the end of the day, full-formed. And after you grow it, you know... then you need to cook it. And that takes time. And planning.

On the one hand, the West is addicted to a diet that's killing us. On the other hand, we spend less than 20% of our income on food and spend less than, what, 10 hours a week? preparing food (on average). As somebody who's had to rebuild her entire conception of food from the ground up, I'm still sympathetic to the thinking behind where we are today.

There is another way to eat, I know, somewhere between industrialized, corn-fed fake food and fungus-ridden-today-we're-eating-dirt-grown-your-own-grass food. There are farmer's markets. Local agriculture. All that jazz. But that doesn't take into account how people are going to eat during the winter, or those precious spring months when you're growing what you'll gorge on come end of summer. You end up eating a lot of turnips and jam and drinking a lot of vodka.

What''s on offer now is so damn good that's it's been a struggle to break the pizza-burgers-prepared-food-cycle. Taking that next step - the parsley-at-all-meals-turnips-all-winter step - is something I just don't know that I can do if I want to continue to maintain a modern lifestyle.

There's a better way to eat. And I'm still struggling to find it.

What We Eat

I made the switch to eating like a real person back in Chicago (I lived well in Alaska, too, but fell on hard times in South Africa where I subsisted mainly on peri-peri rice, spinach pies, and Woolworth's prepared foods), but I'm still sometimes impressed at the amount of shrubbery that goes into the shopping cart each week.

The older (and creakier) I get, the more I pay attention to what I eat. Getting sick four years ago only made it easier to make the correlation between mood and what I was eating.

Fitnessery

The long winter was rough on my fitness level and my jeans size, as I've noted before. When I realized two months ago that I'd gone up a size over the winter, I realized it was time to get my crap together. The problem is, it's difficult to figure out the best way to get your crap together when you're already working out several times a week.

For me, it's about finding the right balance of intensity and endurance. For nearly a year, I've been up at 5:30 in the morning doing 30 minutes of pilates and free weights, but it was just so low intensity that about all it was good for was flexibility and casual activity maintenance. I was getting about 20 minutes on the elliptical a couple nights a week, too, but this was dramatically different to my workout back in November, when I had two solid 30-40 minute workouts through my day job fitness program every week (suspended in December), plus five days a week of pilates, plus biking to work five days a week, plus another 3-4 days on the elliptical. Good weather is good for fitness.

But if my fitness level drops, my mood and energy start going wonky, and it very quickly gets tougher to fit into my existing clothes - and we all know how much I hate shopping for clothes.

When I got on the scale a couple months ago, I discovered I'd gained a whopping 18 lbs over the winter. Seriously? I thought, in just four months? Besides the money-spend on clothes shopping (I've long given up hating myself over weight. It's not so much asthetic as practical anymore), the frustration, for me, was the I just didn't feel very good. I was having more trouble controlling my blood sugar, I was more down than usual, and I just didn't have any energy. Going to bed at 8:00 pm sounded like a fine idea some nights. Not because I did anything exhausting, but because I felt depressed.

So, even with a modicum of fitness in the mix (30 minutes in the morning and 2-3 days in the evening), I was not at my best.

By concentrating on cleaning up my diet (oh, I do love that low-carb coffee cake, but eating one a week was a little much), I easily dropped 6 lbs in a couple weeks, but without the fitness part, I was still tired all the time, with wonky sugar, and still stuck buying new jeans.

It was time to mix up my fitness routine. The new day job was great for switching up my fitness routine, so when I started there at the end of March, I started biking six miles roundtrip. With all the lights and switcheroos, it takes about 20-25 minutes to get there in the morning and again to get home at night.

But this still wasn't cutting it.

Pilates, relaxing as it was in the morning, wasn't the best use of my time either. The great thing about my morning routine was that - unlike my afternoon elliptical slacking - I did it every morning without fail. So I needed something in that timeslot that was going to make the best use of my time.

See, I always put off changing my workout routines as long as possible because, of course, there are a couple days of insulin adjustment involved, and highs and lows and math and needles are always annoying at 5:30 in the morning (for those interested, the magic formula was calculating 10 carbs for breakfast instead of 12 and then rounding down the number of insulin units my meter calculated for me, unless my blood sugar is below 90 during my morning test, at which point rounding up is actually better).

So I went ahead and pulled out my copy of Jillian's 30-Day Shred and said, "OK, it's time."(and if you think Jillian is like some Jane Fonda "squeeze your butt while wearing a leotard" thing, think again. Her videos are the closest thing to the tough-love circuit training I was getting at the POW gym back in Chicago, with the same immediate results).

This 25 minute cardio and strength routine regularly kicked my ass when I first got it, but I'd set it aside for awhile and moved on. So Monday morning I got up at 5:20 a.m. just to make sure I had enough time in case of sugar wackiness, changed my clothes, and got started. At the end of it, I realized that all that bike riding had indeed actually been paying off, because my endurance was much better than the last time I'd done the workout.

What I love about this routine is that the fitness, energy and endurance improvements are evident pretty much immediately. On day one I was bouncing around at 6:00 a.m. ready to start the day. By day two, I noticed a marked improvement in my bike riding and on day three the workout was already a lot easier. Last night, I noticed better definition in my arms, and this morning I stepped on the scale for the weekly weigh in and found that I'd dropped 2 lbs. Not bad for 25 minutes in the morning (and another 40-50 minutes a day of bike riding, of course, but the morning workout was the only thing I changed).

I also went ahead and took another look at my diet to make sure I'm making the best use of my calories. I made the switch from almond flour to soy flour, which has half the calories and only 4 more carbs per serving (and still less than half the carbs of regular flour). It's also cheaper, so: win!

The last big push will be to break my new daily popcorn habit at the day job. We have a popcorn machine here at work, and I regularly eat 2 cups of popcorn as a complement to my lunch. That's an extra 200 calories a day, which doesn't sound like much until you realize that's 4,000 calories a month.

It's the little things, you know? They add up.

At any rate, this week has been bursting with far more energy and alertness, much improved sugar numbers, and a noticeable toning of my legs and arms, which has gone a long way toward improving my strength on the bike, too.

I'm still looking at trying to fit in at least two more workouts per week, preferably at the boxing gym downtown. Downsizing freed up some cash for J. and I and it looks like we'll be able to start boxing classes next month. I figure that's another 2 hours of fitness a week, which should be about right to get me to the level I'm most comfortable at.

It's funny, you know, because there certainly is a genetic component to how *easily* one can lose weight. For those of us with the best of the survival genes, it's not that we *can't* be 150 lbs (or 185 lbs, in my case. I don't ever want to see the tail end of 170 ever again), it's that doing so requires a lot *more* effort than most people. In fact, I don't expect to see that wishy-washy 185 by making these changes. What I want out of this is to get me at the fitness level I'd prefer and get me back into November's jeans.

That's it.

And to do that will require about 1.5-2.5 hours of exercise 5-6 days a week. That's just how fun it is to be me. And probably another reason why I get so pissed off all the time when people assume that anybody clocking in at over 200 lbs must just be lazy and sit around eating donuts all the time. This is what it takes for me, personally, to clock in at around 200 lbs. More than that requires extreme self-deprevation of the 1400 calories per day and 2-3 hours exercise 6 days a week, and you know what? That's not the life I want to live. I love my body. I love being big and strong and scary. If I'm too hungry to throw a good right hook, what's the point?

I'm all about practicality, people.

Health Insurance Reform Passes

Freaking out? Here's a great party-neutral fact sheet of what you can expect the next couple of years.

For me, this means I don't have to spend my nights filled with terror about whether or not I'll be laid off or how we'll pay for J's cancer scans. It means I'm not chained to a day job for the rest of my life. It means that if I do start to make it as a freelance writer, I'll be able to afford to stay home and write books if I want to.

What a lot of people don't realize is that the biggest dream I lost four years ago when I got t1 was the dream of being a full time writer someday (that, and being a licensed scuba diver. Needless to say, the writer thing was far more tragic). It's going to be very interesting to see what kind of explosion in entrepreneurism we have now that we don't have to be employed in order to afford healthcare.

Is it a perfect bill? Of course not. It's going to be messy to implement, and people will freak out. It will be a rough ride. But when I explain the madness that was being uninsurable to my nieces and nephews in twenty years, they'll look at me like we were some kind of crazy barbarians living in a madhouse distopia.

And, to be honest, if you had an illness like mine, if you fought with insurance companies the way I did, if you had to scream and cry and beg for care you were actually entitled to (let alone try to afford uncovered care) - you were.

Things That Need Doing

Stepped on the scale today for the first time in, what, six months? When I was living at my old apt, I was very good at weighing myself once a month and making adjustments accordingly. It kept my weight steady and my clothes fitting and all was well. Now that my house is so damn cold, I'm less inclined to strip and step on a scale. So I've avoided it since at least October when the house started getting chilly.

I knew I'd put on 10lbs or so since J. and I moved in together. I actually managed to get that back down to +5 before the holidays. Then came the holidays, and winter, and tax season, and this really great website with low carb coffee cake recipes...

Despite getting up at 5:30 in the morning to do 30 minutes of exercise and another 20-25 minutes 3 times a week when I get home, it just hasn't been enough to make up for the coffee cake and cold house. They've also cut the workout program at work, which means no more twice-weekly strength training sessions and no more gym membership.

What happened is just what I suspected would happen when I ceased being vigilant - I've gained a retarded amount of weight since J. and I first met a year and a half ago - most of which I've put on in the last 4 months of coffee cakes and cold houses. Nobody believes me when I say this is what happens when I stop paying attention.

What actually moved me to get back on the scale was my crazy sugar numbers. My blood sugar has been a lot harder to control, and far more frustrating. I wanted to know if the weight gain was indeed substantial enough that it may be causing insulin resistance. And oh yes, dear reader - it is.

There are some quick and easy changes I'm making right away: no more low carb cookies and coffee cakes, for one (do you have any idea how many calories are in almond flour?), and sticking to the lunch I bring into work instead of adding snacks from the free salad bar at work. I did manage to eliminate my peanut butter/low carb English muffin fix way back, which is how I curbed the initial weight gain and got things back under control. But now there's that coffee cake thing...

My 20 minutes pilates/15 min free weights workout each morning is pretty solid. What I need to work on now is getting at least 30 minutes 5x a week of cardio instead of the current 20-25 3x a week. A lot of the problem with getting this in is wonky sugar numbers. Some days I turn my insulin off at 3:45 and I can workout for 50 minutes. Other days, I turn it off at the same time and I can only workout for 20 and then my sugar crashes and I start to tremble and all the energy goes out of me and I have that intense hunger spike and desire to burn the world to the ground. I need to get this timing right if I'm going to workout properly every day after work.

I'm also working toward doing at least 40 more minutes on Sat or Sun to get me to 6 days. 6 days a week of 30-50 min a day is pretty much the only thing that moves me. It's just a really tough routine to put into place during the best of times, and right now the house is cold and I've got a crazy day job and personal deadlines.

But. The alternative is very bad. This is a good reminder of what happens to me when I don't stay on top of maintaining my weight with monthly weigh-ins. I know some folks thought this was odd - if you're happy with your weight, why be so vigilant?

Here's why: because aside from that whole immune disorder thing, I have great genes. I'm very good at packing weight away, and when you have aforementioned immune disorder, this is a very bad habit to get into. I have been displeased with my numbers, and not feeling well to boot. Now I have a better idea of why. I'm still quite pleased with how I look (I spent a long time learning how to like myself, and reorienting how my self worth was measured in a society with weird ways of measuring worth, particularly in women), but my numbers are bad, so I don't feel as well, and I'm not throwing out my wardrobe because I'd rather eat coffee cake.

So, here's what we're going to do to get back to maintenance:

Monday/Weds/Friday

Workout: 20 min pilates. 15 min free weights
Breakfast: 2 eggs w/spinach
Workout: Bike to work (if not snowing, more than 20 degrees out)
Lunch: Leftovers. No more salad bar additionals.
Workout: Bike home (if not snowing, more than 20 degrees out)
Workout: 25-30 minutes elliptical
Dinner: Entree and side. No more tortillas/low carb bread
Dessert: Yogurt and berries

Tuesday/Thursday

Workout: 20 min pilates. 15 min free weights
Breakfast: 2 eggs w/spinach
Workout: Bike to work (if not snowing, more than 20 degrees out)
Lunch: Leftovers. No more salad bar additionals.
Workout: Bike home (if not snowing, more than 20 degrees out)
Workout: 25-30 minutes elliptical. 25 minutes circuit training.
Dinner: Entree and side. No more tortillas/low carb bread
Dessert: Yogurt and berries

Saturday

Breakfast: Low carb pancakes (no almond flour makes a big difference)
Workout: 40 min circuit training
Lunch: Soup/sandwich/leftovers. No more "it's a special occasion" carbs
Dinner: Entree and side. No more tortillas/low carb bread
Dessert: Yogurt and berries

Sunday

Breakfast: Low carb pancakes
Workout: 15-20 minutes elliptical
Lunch: Soup/sandwich/leftovers. Ditto above carb curb.
Dinner: Entree and side. No more tortillas/low carb bread
Dessert: Yogurt and berries

This eliminates the low carb bread/tortillas I've been snacking on and low carb/high calorie coffee cakes and cookies I've been making. I think this alone will make a big difference. I'm telling you, I could live on low carb coffee cake forever.

I'm not terribly happy with this, but I'm less happy with my sugar numbers right now. If I'm going to do some of the things I'd like to do this year, it's also very important that I get into some semblance of fighting shape. And all this happy-happy-joy-joy stuff has aided me in becoming a bit doughier than I'd like.

Thing is, you want to be a certain kind of person, you have to start living like that kind of person, no matter how frustrating it may be. And there's a certain type of person I'd like to be. And she works out a lot more than I've been able to the last few months. It's too bad she doesn't eat as much coffee cake as I'd like, either, but them's the breaks.

Back At It

Up at 5:30 this morning to add 20 min of pilates onto my 15 min morning free weights routine. *Damn* I am out of shape.

This thing with having a chronic illness is that you just notice more when you're lazy about taking care of yourself. During the last couple of weeks of sporadic workouts and weird food, I've been experiencing some mysterious aches and pains - especially in my core - and inflammation. There is likely also weight gain tied to this, as my clothes aren't feeling so hot on me, either. I just can't get away with letting things slide for a few weeks. I just feel it too much now.

Not that there's been complete fail, mind. I still bike to work 5 days a week, do my morning weight routine 5 days a week, and even during last week's laziness, I still worked out for 20 min on the elliptical twice that week. It's just that... well, it's not enough for somebody with a sendentary job and wonky immune system.

A couple of weeks of pilates and getting back on track with my after-work workouts on the elliptical should help. 5 days a week pilates, 4 days on the elliptical - in addition to weights and bike riding commute - should do the trick.

I've also been combating some hunger issues. I'd been getting wacky-hungry at work between 9-10am and vainly searching for food. Some of this is just stress eating, but it's stress eating triggered by mild hunger. I went ahead and added a little more protein to breakfast - two scrambled eggs w/spinach in the morning instead of just one egg - and that seems to have done the trick (an extra 70 calorie egg in the morning beats a 350 calorie english muffin with peanut butter at 10am).

As we head toward the holidays, I'm being more mindful of what I eat. One of the drawbacks to getting the pump is that it made me a lot less careful with what I ate - and my #s and my body are paying for that. It's time to stop. I'm a carb addict, which means it's incredibly hard to change my habits when I get used to indulging again. Too much "well, it's the holidays!" means shitty sugar numbers, shitty health, and shitty mood.

And you know, I'd like to stick around those extra 15 years.

What I'm Up To

Drowning in Day Jobbe work. This will be the state of things until the end of January or thereabouts. Hard push for the next 6 weeks.

I'm also working on cobbling back together a good workout routine. Regular workouts are great, buy my sugar numbers have suffered. Lots of lows this week as I work hard to recover my sugar from Thanksgiving excess. It's certainly "allowed" to relax my restraint for a day or two, but man, I pay for it later. I'm starting to think the occasional slice of apple pie and sedentary days just isn't worth the resulting 3-4 days of achiness, inflammation, depression, and rocky sugar numbers.

Yeah. I'll be skipping the excess at Christmas, I think.

Also, I'm reading a damn bloody book, which I'll be blogging about soon.

HealthCare Concerns

Is anyone else really concerned that the latest "health screening reversals" have targeted women? See mammograms, and pelvic exams. I have yet to see the "let's stop screening men for prostate cancer" and "forget the colonoscopies" announcement.

Insurance is Officially Back Up

And not a fucking moment too soon. I have $2500 worth of pods that should have been in the mail last week.

The delay means I'll be on shots from tonight until at least tomorrow when/if the shipment arrives. They've been holding it since Monday, likely waiting for the fucking payment to process. Not looking forward to a whole weekend of shots, so let's hope the shipment arrives tomorrow, shall we?

Light At the End of the Tunnel

There appears to be some light at the end of the health insurance tunnel, which is good cause today was the day I was going to drop $1154 on health care premiums through Sinclair.

I was able to place my pod order without a problem (!! really !!), and tho our account still shows up as "inactive," I'm told that doctors are taking and processing the claims, which will be back up to date by the time anything we do this week actually gets processed, so at least we don't have to pay out of pocket at the hospital or get turned away.

Still paying out of pocket for prescriptions, but that wasn't my urgent concern. The terror and sleepless nights were in trying to figure out how to come up with $1100 for my pump supplies and $3,000 for J's twice-yearly post-cancer scan (which he was due to have last week).

We are both a lot less hysterical now, and should hopefully be sleeping a lot better. Man, what a nightmare. It's not quite over, but it's a fuck of a lot less urgent. It's like the difference between wondering how you'll survive and just wondering how many nights a week you'll be eating ramen.

Oh, there was some other good news today, too.

As J said, "IT'S LIKE CHRISTMAS!"

Batten Down the Hatches

I've spent some time tightening up our budget this week, which is rough to say the least. Monday morning I'll be sending J. in to Sinclair community college with a credit card authorization giving UHC $1145 to cover the two of us through J's account since they're no longer honoring my work account.

As noted elsewhere, I can't go more than 60 days without coverage, and tho once this whole debacle is sorted out they'll retroactively cover me for the gap... well, let's just say I don't want any paperwork in exsitence anywhere that says I went more than 60 days without coverage. I have to live my whole life as a t1, and trust me - insurance companies will find every crazy way possible to shunt the most expensive folks from their ranks. And I'm one of them. And tho I could fight them when they pulled out that "no coverage since Sep 1st" letter... it would take 6 months to sort out, and I would be fighting it my whole life. Every time I changed insurance providers or J. or I had a big medical bill, they'd root through our account. We'd never escape it.

So Monday morning we're out $1154. It's an 80/20 plan, so we've started stuffing money toward paying for expenses. He's got an MRI every 6 months that runs $3,000. My drugs, if I drop my pump and get real lean, may "only" run $350 if I'm careful. Add that to regular endo appointments for me and port flushes for him (J.'s a cancer survivor. There's another year of follow-up before he's insurable again outside a major employer-sponsored group plan), and we're looking at about $11-12,000 a year in bare bones medical expenses. You figure we'll need to come up with, what, $2400-3000 of that out of pocket in addition to the $1145.

Hopefully we'll only be out coverage for 3-6 months. So let's say $1500 out of pocket over the next 3 months in addition to the $1145.

That's an extra $500 a month we need to pull from thin air (not counting the $1145, which is going on the credit card I had nearly paid off).

Sorry this has become the "all shitty health insurance, all the time blog," the last couple of weeks, but these issues weigh pretty heavily on me, and getting all the facts and numbers down on paper actually helps me cope and process the whole thing.

I've shaved about $150 from the budget right now by tossing out netflix and severely cutting our "misc./fun" budget from $200 a month to $100 a month (we already live pretty lean. You don't go from having $17,000 in credit card debt to $2,800 in 3 years if you aren't already living lean). We'll be making up the rest by paying a little less toward that fucking credit card bill (did I mention I was just $2,800 and 5 months away from paying it off completely?), and relying on J's new part-time job. I'm also working on hunting down a few freelance gigs. One of the roughest things going on right now is that my student loans have come due this month. That was fine when the credit card was going to be paid off. Now I have to juggle those with the CC payments and medical costs.

We'll make it through this. But it doesn't make me any happier about it. The most frustrating part is that it's totally out of my hands. At least when UHC was only fucking *me* over, I had some control over it. I could spend hours and hours yelling at them and get the issue resolved. Now I'm totally powerless to do anything but pay for a second policy. That's incredibly, brutally frustrating. Because ya'll know me: I'm a fighter. I fight to the end. Being on the passive end of this whole fiasco drives me crazy.

So, I'm doing what I can. Cutting back, paying bills, eating a lot of soup and beanless chili... Recipes to come! Because when it looks like everything is crap, it's good to remember that you can still afford to eat. And with how rough it is out there right now, that's nothing to sniff at.

What Would...

Welcome Back to the Ranks of the Uninsured

Last Saturday, I was alerted that UHC had dropped my insurance coverage due to an "administrative" error. I had been completely uninsured since October 1st.

Now, I have dealt with a lot of “administrative” errors at United Healthcare. Every three months, I spend about 6 hours over three days on the phone screaming at customer service reps, their supervisors, rapid resolution managers, *their* supervisors, customer care coordinators, benefit coordinators, and (when you finally reach somebody with any weight in the hierarchy), the actual medical “advisors” who approve and deny my actual claims.

You learn the buzzwords. “Attorney general.” “Lawyer.” “Sue.” “Medical necessity.” “Death.” And, “Gross negligence.”

And in about three days, you get shipped the medical hardware they approved for you a year before.

Yes, I go through this every time I need my medical hardware. But it does get covered. You know, eventually.

Folks who have yet to experience a major medical issue are often ignorant of how insurance companies actually work. They are also largely ignorant of what happens when you get a major illness like any form of cancer, diabetes (including juvenile, the immune disorder that I’ve got),lupus, CFS, or any of the long list of over 30 “uninsurable” medical conditions that – as my shorthand name implies – means that you are completely uninsurable outside a major employer group plan… for life.

Let me say that again:

If you get a chronic illness and/or cancer, any form of cancer, you are TOTALLY UNINSURABLE for at least 24 months. And in the case of certain cancers like leukemia, you are uninsured FOR LIFE outside of an large employer-sponsored plan (so long as you go less than 60 days without coverage. More about that later).

If your employer drops you for any reason – because you’re laid off, because they don’t pay their bill, because of an “administrative” error – you have just 60 days to find major medical coverage through another company, or you will be totally uninsurable for 12-24 months EVEN UNDER AN EMPLOYER SPONSORED PLAN. That’s right: 60 days without coverage and I will have to wait 12-24 months to get insurance covered for the insulin that keeps me breathing. After 60 days, insulin becomes part of me “pre-existing condition” and will not be covered – EVEN UNDER A MAJOR EMPLOYER SPONSORED PLAN – for 12-24 months.

If I bare bones my medical costs, I’m out about $300-$500 a month. Right now, I’m out about $8,000 a year in medical costs with the pump. If I go back to shots and get a cheaper, crappy testing meter (testing strips alone run me $180-$250 a month), I can winnow that down to that $300-$500 range.

And that’s JUST TO STAY ALIVE.

That doesn’t include any preventative care. I’d have to drop my 4x yearly endocrinologist visits, gyno care, urgency care visits for antibiotics, etc. That $300-$500 covers the costs of keeping me breathing.

That’s why I include health insurance benefits in my salary negotiations. If I have a comprehensive plan, I can put up with being paid a little bit less.

But when you drop my insurance… you’ve effectively cut my monthly salary by over $500.

And when you drop my insurance… the clock starts ticking.

I have been uninsured for 17 days.

I have just 43 days to get comprehensive coverage, or I become uninsurable EVEN UNDER AN EMPLOYER SPONSORED GROUP PLAN.

I have been here before. When I was diagnosed three years ago, I had very cheap health insurance with a very high deductible. But I was "insured." And I was about to find out just how incredibly "lucky" that was.

What “insurance” means is that I was out ONLY $6,500 out of pocket for my 3 days in the ICU instead of $30,000.

That’s what being “insured” means. It means you get forcibly fucked, but not gang raped.

Over the next few months (again, as an insured person), I was still spending $300 a month out of pocket for medical expenses. I had a $2500 deductible and 80/20 plan. I was shelling out a lot of hard earned cash to stay alive. But hey, we all need to pay to stay alive, right?

And I was INSURED.

Six months after being diagnosed, I was laid off.

COBRA was nearly $400 a month. Rent was $550. Utilities were $200. Unemployment was $328 a week.

You do the math.

I was forced to either cash out my 401(k) or become uninsured completely.

I cashed out my 401(k).

I started living on expired insulin and reused my needles. I saw my endo half as much as recommended. I did the bare minimum I had to to stay alive.

When money ran out, I moved in with friends in Dayton. I lived in their spare bedroom rent free. I continued to live on expired insulin. I had trouble paying for food. I went almost 30 days without insurance.

I signed up with my temp company’s health insurance plan. It was cheap, and nearly worthless. It covered NO pre-existing conditions for 12 months. It was completely useless to pay for any of my diabetes drugs or appointments or any hospital stays I may incur that had anything to do with my illness.

But by signing up for it, it insured I didn’t go more than 60 days without coverage and become totally uninsurable under a “real” insurance plan.

By the time I got employed at my current job, I had over $17,000 in credit card debt. Over half of that was related to medical expenses. The other half was composed primarily of moving, traveling, and grocery expenses.

At my new job, I got day one health insurance coverage. I paid $20 for insulin and nothing for syringes. Co-pays were minimal. Costs were suddenly manageable. I could start living on non-expired insulin again. I had fewer crazy lows and started seeing an endocrinologist again. Life improved remarkably.

When we switched plans to a no-deductible plan, my health insurance costs went down to basically nothing. I now pay just $50 a month for coverage for J. and I.
It sounds too good to be true…

And, of course, that’s because it sometimes... is.

I spent the first 6 months of the new plan arguing with UHC because my account had some kind of “administrative” error that required me to pay the $1,000 deductible out of pocket instead of through the company HRA. Six months this went on. Six months. After six months, they finally “reimbursed” me for the $1,000 out of pocket.

OK. Fine.

Then came the whole fiasco with trying to get my insulin pump approved. It took a year of Insulet fighting with my insurance company before they got approval. Then once they had approval, the paperwork was filed incorrectly. We fought for weeks over that to get Insulet paid. But every three months, UHC found some reason or another not to send my shipment. The shipment they'd APPROVED a year before.

They couldn’t find my paperwork. Or my paperwork was automatically denied because it wasn’t processed correctly. Or there was now an in-network provider for my pump… but no one had the actual phone number of the in-network provider (it took me three days and six hours of screaming and threats to get… a... phone number. I’m serious).

And now… now I’m 12 days from needing my next shipment, and here we go again.

UHC once again dropped coverage. Not just for me, but for everybody at the company. Just dropped it. “Oops.” Just like that.

And just like that, I’m completely uninsured.

I have $186 worth of testing strips that I need to come up with the cash for next week. I have $90 worth of insulin I need to get the week after that.

And I have 43 days to find insurance again. Or J. and I will be turning off our heat completely and living primarily on rice, hot dogs, and expired insulin.

Welcome to America. We have the best healthcare system in the world.

And this is how it works.

Support of Public Services Health Insurance

Apparently, John Boehner hasn't "met one American" who supports a public health insurance option (you know, like our public postal option, public library option, and public security [police] option). I think our current public services have improved the public good and kept private costs down for the same services, and I believe it will do the same for health insurance.

If you think so too, you can sign the petition here.

Excuse me, ma'am, I'm busy trying to figure out which way I'll choose to prevent you from receiving healthcare

In conversation with my mother:

"Well, with this Obamacare thing, we'll all get rationed healthcare."

"Mom, do you even know what `public option' means?"

"The government's taking over healthcare!"

"Mom, the government isn't running healthcare. All they want to do is expand Medicare to cover people who don't have insurance or are underinsured. That's it."

(long pause)

"Are you SURE?"

"Yes, mom. I have a chronic health condition. This is something I actually looked into."

"Well, what's to stop employers from just dropping our insurance then, if there's a public option?"

"Because Medicare SUCKS, mom. Doctors treat you like crap. You still pay copays for insurance. It's a shitty insurance program for poor and desperate people. Nobody fucking wants to be on Medicare. But for poor people, or people with chronic conditions, or other folks who can't afford health insurance - it's *something.*"

"But --"

"Ok, mom. Think of it this way. It's like the post office. You can go to the post office and have a letter sent for cheap, and it takes 5-7 days to get there, right? And you wait in a long line and the employees are surly. Or you can go to UPS or Fedex and get it shipped overnight and walk right up to the counter and everyone treats you great. You still get your letter sent. It's just that the service and speed you get from the post office sucks compared to UPS and Fedex. But! It's affordable. The postal service makes it possible for everyone to send a letter, not just rich people. All they want to do is create an insurance version of the U.S. postal service. And the post office certainly hasn't put DHL, Fedex, or UPS out of business."

"Are you SURE?"

"Yes, mom."

"But... then why do they make it sound like a government takeover of healthcare?"

"Speaking as somebody in marketing and communications, I can tell you exactly what I'd say as a communications manager at a big insurance company... and `government takeover of healthcare' is it. These are the same talking points the insurance companies dragged out back in 1993, the last time we tried to get healthcare reform going. Because the other stuff in this bill - which the insurance companies aren't keen on advertising - is that there's going to be a lot more regulation for the insurance companies. Dropping bank regulations on the banking industry in the 90s helped create the greedy meltdown last year, and having an unregulated insurance industry is what's turning health care into a greedy meltdown. The bill will eliminate lifetime caps on coverage and force them to cover people with pre-existing conditions (among other things). These companies make billions of dollars a year. This is their marketing strategy. Tell people the government's taking over healthcare, and people freak out. I do a lot of marketing stuff. I provide people with a lot of talking points. Now think of somebody who's making about 8 times what I make sending press releases to every talk show host and major news outlet in America about what's become a totally political issue and spending millions in money lobbying your representatives. Scary talking points make much better news than `expanding Medicare.' People who are afraid are really easy to manipulate."

"Well, I just don't know how it'll all turn out."

"I don't either. But it'll be really interesting to find out."

(for those interested, here is the actual latest version of the bill. Wiki-like forum where you can actually comment on diff't sections of the bill. Very cool.)

Real News

"After months of committee meetings and hundreds of hours of heated debate, the United States Congress remained deadlocked this week over the best possible way to deny Americans health care."

I love The Onion.

Change has Always Been Bloody, Yo

History suggests that major social policy unfolds on a continuum. The Social Security Act of 1935 disappointed liberal New Dealers because what was called "old-age insurance" covered only about half the adult population. It excluded farmhands, domestics, employees of small businesses, and most blacks. That was because FDR needed the votes of Southern Democrats, the Blue Dogs of their day. (The bill cleared the House Ways and Means Committee with only one Republican vote.) Similarly, the Civil Rights Act of 1957, immortalized in Robert Caro's Master of the Senate, was weak tea. It had to be strengthened by the Civil Rights Act of 1964 and the Voting Rights Act of 1965. In the later bills, Lyndon Johnson betrayed Southerners he had made deals with in 1957. If Nancy Pelosi can't break Rahm Emanuel's promise to Big Pharma's Billy Tauzin this year, she can try to break it in the future. And Tauzin will lobby for more favors as the all-important new regulations are issued. Nothing in Washington is ever set in stone.

Urgency Care Tomorrow

What I love about reading Diabetes Mine (she's another Omnipod Pump user) is that pretty much anything that's happened to her while using the pump also, eventually, happens to me. She's got an incredible resource of t1 diabetes information that has really helped me get a handle on my illness and the most up to date info. There's nothing like reading the musings of another t1 who strives for optimum health.

I've been debating about whether to visit Urgency Care for my pump site infection, which, sadly, has not gotten better despite cleaning and dressing twice a day for the last two days (discovered it Thursday night when I pulled off my old pump to change it out).

Finally, I did some googling today and found this post about Amy's own pump site infection, which pretty much looks exactly like mine (only mine is on my thigh, and is redder than hers, as I was silly enough not to jump over to the doc immediately, as she did).

As I cleaned and drained the wound again tonight, I realized that if J. had something that looked this bad, I'd make him go to Urgency Care.

Yeah. Urgency Care tomorrow for me. Bah. I fucking hate doctors.

Facts About Healthcare Reform

I'm all for healthy debate, but please, folks, read the facts before you go debating. Otherwise it's not debate, it's "OMG MY DEEP SEATED FEARS VOMITED IN PUBLIC AND CRAZY KNEE JERK REACTIONS TO DEEP SEATED PERSONAL ANXIETIES AND OMG DEATH PANELS" and that's just... not helpful.

Facts about healthcare reform here.