Pay, Pay, and Pay Some More

That is the motto of our new health insurance.

Late last month, we finally got all the benefit information for 2011 from our employer.

Oh. My. Goodness.

Does anyone else spend hours on insurance stuff this time of year?

Or is it just us?

My head hurts.

Now we have exactly 5 days to figure out which end is up.

Yesterday we spent about an hour doing some virtually guided benefits adviser thing.

Trying to figure out the best plan for when you have a tumor in your lung that is probably NOT cancer but it COULD be cancer and what if you need a lung removed next year?

We picked this new plan, the one our employer is heavily pushing, where we open a flexible spending account with an investment company. We contribute and then pay out of that account for about $6000 annually until the insurance kicks in.

The idea is, if you don't have any major health issues, you can sock away money year after year and build a medical investment account. Like I told the hubby, it's really a 401k for your health.

But it only really works if you don't use it.

Hahahahahaha. That's a great punchline, isn't it? Here's health insurance that is only affordable if you don't use it.

Oh man, I'm going to hurt myself snorting in derision over here.

So the thing was, the employer sent us a brochure with all these 'real life' case studies where every. single. family. was better off with the new 401k-like health plan. There was not one example where a family should pick another plan. The brochure also stated that the health plan was ideal for healthy people.

Anyone here think I am a healthy person?

More like health impaired if you ask me.

So I wrote to the benefits department and was kind of snide because I was pissed that the brochure was a heavy sell marketing campaign not a tool to actually help people make a decision.

I wrote: It's great to see so many case studies and how every single time the best option is The Health Plan You Want Us To Buy. Are there case studies that show when other options are a better choice?

To which they responded by directing us to the virtual benefits advisor.

We estimated our needs based on this past year, which is the worst medical year we've had in a while. 1 short hospital stay. 2 ER visits. 10 specialist appointments a year. About 5 primary care visits a year.

The virtual benefits advisor smarmily told us, based on all our information, The Health Plan They Want Us To Buy is the best choice for our situation.

So the big question is, am I in good health and just don't know it? Do healthy people commonly end up in the hospital and ER? Is that the definition of healthy? Please enlighten me.

Granted, this plan is likely the cheapest in terms of day-to-day costs. Most of my medications will be free, which saves about $1,000, but all doc visits and labs will be out-of-pocket. The big question mark is how that trade off works. Will I spend less or more on labs and doctor visits than medication? Can we actually save some of the money we contribute or will it all be spent on medical care?

We have not been given the information to calculate projected answers to these questions--just that heavy handed, rub our noses in it, marketing brochure. I have asked for price lists so I have some idea of how much the CT scans I'll need will cost. It seems unethical and almost criminal to burden people with such a large out-of-pocket deductible and not give them the price list.

I am sure the Benefits Dept. loooooooves me, but it galls me that I have to ask, even beg for this info. Makes ya really feel like a "valued employee" don't it?

The other thing that bothers me is that side by side financial comparisons do not tell the whole story. They also need to factor in when benefits kick in and how much. A lower deductible plan may have a higher total pay out, but barring a health disaster, it may provide more benefits for run-of-the-mill health stuff. This is the math that the employer is not doing or providing to its employees and I don't feel like I have enough information to run those numbers by myself.

I continue to be 'for' health care reform, but they need to work harder on not just access, but affordability. I do not have major health issues, just chronic ones, and it is killing us. How do people on dialysis or with diabetic complications or those in need of heart surgery survive?

There also ought to be a law on how large employers 'pitch' health care. Since,apparently, they aren't going to be ethical about it on their own.




*I say 'our employer' because I have my pension and what not there still even though I'm not currently employed there.

Marriage and Chronic Illness: Sucking

A few weeks ago, I was over on the lovely blog Queen of Optimism (see sidebar for link) talking about how to explain chronic illness to those who are in good health.

Frankly, I tire of trying to educate people so I can be a bit bitchy about it. Further, I have the good luck as well as ill fortune to be married to the healthiest man on earth.

A man so healthy, that when we all had a terrible stomach flu during the toddler's first year, he wondered if he was going to die.

From the stomach flu.

Ha!

HA!

I still laugh to this day thinking about it. Granted, it was a truly horrid stomach flu. Like a category five hurricane in our intestines. I threw up about 40-50 times in 8 hours and had black eyes from burst blood vessels, but having been through what I've been through medically, I knew the stomach flu was nothing other than a temporary annoyance.

My hubby was planning his funeral. I was still breastfeeding 24/7.

So, yeah, how do I explain chronic illness to someone like that?

Or when it is stressing our marriage?

See, sometimes the hubby perceives me to not be carrying my weight. True, I am not the brawn of our relationship, I am the brains. So the work I do of planning, organizing, putting together, taking apart, reorganizing etc... is kind of invisible. Existential sometimes as well.

Why, yes, I am the Godot everyone is waiting on.

The hubby knocks down a wall to make a bedroom or nails some cedar down to make a deck, both activities that create longstanding witness to his work. Then he looks around and thinks, 'huh, what the hell has Pissed Off Patient done lately?'

My work is constantly undone, a perpetual motion machine. I load the dishwasher only to still find dishes in the sink. I clean the bathroom only to find a certain small toddler's finger prints everywhere. In Crayola blue.

Do I take lots of breaks? Sure. I need them. But dinner is on the table, dammit.

Do I care if there are dirty dishes? No, not really. I've recognized I am not going to win that particular race. So I clean as I can and then I just don't worry about it. This is a philosophy that works well with chronic illness.

Sometimes I'd like to see how the Hubby would like it if his deck randomly disassembled without warning. Given his Type A personality, I bet it would give him a facial twitch.

So when he gets cranky about me doing or not doing xyz, I have a few different ways of describing the mountain I have to climb to do the simplest things.

1. Remember the last time you were so sick you couldn't get out of bed? Now, imagine if that's how you felt every day and you still got up, got dressed and did everything you were supposed to.

2.Someday you'll get sick. Disease comes for us all. Someday you'll be sick and you'll wonder how I ever did anything at all.

3. And last, but not least, a personal anecdote. First a set up: Apparently, having small children means vomiting mightily at least once a year. We have puked every year since the toddler was born. So this year, the hubby had the stomach flu and was coddled by yours truly.

Just as he got better, I got sick...on a weekday. On top of the stomach flu, my adrenal glands were not functioning well. So hubby went to work because why, I don't know. I was left puking and feeling like I was going to pass out (thanks to the adrenal glands) while parenting a small child who had broken the baby gate. This effectively meant no lounging on the couch for me because I had to compensate for the broken baby gate.

This anecdote makes the hubby stop, think, and readjust his attitude.

The thing is, I am quite strong and determined and I push through a hell of a lot that would flatten a lesser person. Chronic illness toughened me to where it was no big deal to have the stomach flu, which is kind of a saving grace considering how the hubby handles being sick.

One of us has to suck it up.

Illness Protocol

I have been wrestling with how much to say to anyone about the toddler. Obviously, here I've been pretty tight-lipped about things other than to say there is a problem.

But I can't do that indefinitely with family as much as I might like to.

Why am I keeping secrets?

First, I think the reluctance to say anything is a form of denial. As in, if I don't talk about it, it doesn't exist and if no one else knows, then I can pretend everything is okay. It makes it easier for me to compartmentalize in a way. If I spilled the beans, my worries would dominate the conversation which would be a real killjoy.

Second, some of my family members have not been so well behaved when dealing with my recent illness.

I spent some time this past weekend responding to questions like "What do you think I did to make you sick?"

To which I responded, "You've got nothing on prednisone."

Early on in my medical mess, people were calling me screaming "You're going to diiiiiiie and I'm going to kill your doctors if they let you." Invariably these loudmouth phone calls came in the middle of the toddler's nap time, which is just not a good time for screaming. I stopped answering calls from certain numbers for a while.

I shudder to think about the phone calls the toddler would elicit. I may have to change my number.

There's this whole emotional management facet to my family dynamics that I just don't want to deal with. I can't be everyone's babysitter, you know? It's hard enough navigating things myself let alone to take anyone else by the hand.

Given how some people have been behaving with me, I think it's understandable that I may not be rushing to say anything to anyone about the toddler.

I don't know what the protocol is here though. Am I doing my family a wrong by not saying anything now? Or is it better to wait until there's a diagnosis or a scary important test involving sedation*? (*Which parents who've gone before have told me the toddler is likely to have.)

Probably I should say something when the test is ordered. By the time a toddler needs anesthesia, it's probably best to let close relations know, yes?

However I am thinking I may try to control some of the extremism I've witnessed recently with some strong statements about what we need and don't need from everyone in terms of support.

Maybe that would work?

Medical Things I Don't Have Time For

I go to the doctor all the time. All. the. time. So you would think there would be no organ left unturned.

Well, you would be wrong. In reality, chronic illness leads to chronic neglect of things that are important but not pressing. Here, I made a list to prove the point.

1. The dentist. Partly because I don't like my dentist because they keep pressuring me to have my wisdom teeth out. They probably do need to come out, but anesthesia is kind of not something I want to deal with right now. Hold the lectures please and just clean my teeth. If you can't hack it, then I'm not coming in. Sorry.

I should really find a new dentist.

2.Pap smear--although the breast lump meant I got one, otherwise I would've skipped it.

3. GERD. Every three months, my father goes for an endoscopy to be sure he doesn't have esophageal cancer yet. You would think I would make more of an effort, but you know what? I can only go to the doctor so much, both mentally and physically. Between infertility, pregnancy and the current health hell hole, I haven't had an endoscopy in over 6 to 8 years. Which is probably not good.

The one follow-up appointment I had after having a baby, the doctor didn't show--they were out of town and due to some admin snafu, I was never informed about the need to reschedule.

I do take my GERD meds though and low carbing helps the heart burn.

4.Asthma education --I've rescheduled once and am about to push it out further. I don't have the physical stamina for it right now. Driving there, toddler wrangling etc.. is just too much right now. Thankfully, it's not urgent.

5.Weight loss clinic--I've given up on it for now. No time to dither with even more doctors. Especially one who already thinks I'm nuts. Can you imagine what s/he would think of me showing up and saying 'hey, I have adrenal suppression?' I don't have the emotional energy to deal with someone who thinks I need therapy instead of asthma medications.

Also, they weren't helping me very much (not their fault, just the limitations of science when it comes to weight loss). We also had some significant philosophical differences. They believed in calories in = calories out, but I know from experience that it ain't that simple. Further there is some decent science (in my humble opinion) debunking calories in= calories out.

More importantly, they weren't running the lab work to check potassium and magnesium levels which is what I really needed. So, like whatever, dude.

Besides, I can't even follow a 'diet' right now. I'm either not eating because I'm not hungry, or eating sugar because my blood sugar is dropping like a stone. There's no room for strict adherence to anything food-wise right now. Maybe when things stabilize, I'll try again.

Pain, Pain Go Away

Man I'm dragging over here. Now I really don't feel well.

Cold, shaking and lightheaded the other night, which probably was a bit more urgent than I wanted to believe? Not a problem. Totally fiiiine.

General all around feeling like road kill stuck on a Hummer wheel, which is not an urgent medical problem? I want to huddle in a fetal position today and commune with a very large quantity of Advil alternated with Tylenol.

I feel like I have a blood loss hangover. Is that possible? Also, the pain, is well, painful. I don't usually have pain like this so I'm a baby about it I guess. (Do I redeem myself if I say I labored 8 hours with Pitocin before asking for an epidural?).

Dear Body:

Just leave me alone will you? I exercise you. I feed you decent food. I take your sorry ass to the doctor to be sure I haven't missed something. Can you just sit down and shut up? I have a life. I don't have time for this. Grow up already.

Up Yours,
Self

Now, where are my big girl panties? It's going to take my biggest pair to slog through today.

Secrets of the Chronically Ill

I haven't really posted on Facebook in over a month.

What do I say?

I'm not calling family or friends. I ignore their calls, letting them go to voice mail.

What do I say?

I haven't figured out how to pretend that my life hasn't been consumed by a medical Chinese fire drill. I'm too upset to hide it well.

Everyone knows the basics,what started this mess. The Facebook crowd knows about the asthma ER visit. I can't say anything more. Some of my Facebook relationships are more superficial, more professional, and I can't taint the network with too much information, you know?

My family knows about the lung nodule and the thyroid stuff, but I've stopped talking about anything else. The look on my Father's face earlier this week; pity, anguish, fear for his child, stops me cold whenever I go to open my mouth.

So I'm silent. Avoiding his calls. Thankful my Mother is in another country with horrid phone lines.

I don't want pity. Some empathy would be nice, but I don't want pity. I don't want to think my parents are afraid of what will happen to me. My own fear is enough, thank you.

I am not good at secrets. So instead I disappear.

Going through infertility, I lost one very good friend due to collapsing into myself. A loss I regret to this day. I apologized, but she wasn't interested any more. That's okay, I don't necessarily deserve to be forgiven, but I hope she knows it wasn't her, it was me. I hope she knows I still love her. I just didn't know how to nurture our friendship and keep myself together at the same time.

Now the struggle is to not repeat that experience. To find the 'zone' in my head where I'm just 'me' and not the Pissed Off Patient.

Only you, lurking internet readers who rarely comment, only you know everything.

You're the only ones it's safe to tell.