2.5 mile walk, mowed lawn and worked in the garden for about 2 hours. Feeling better, less bloated.
Hands still a bit shaky from the prednisone. Not sleeping well.
Category Archives: Life
Can I even afford to go on Humira for Crohn’s?
First, I’ve created an aggregated feed of Crohn’s disease on social media. Check it out!
My last post I talked about the resurgence of my Crohn’s disease. After three years of remission it’s suddenly returned and I’ve been dealing with the symptoms a couple of months now. After the usual period in which I just hope that it will go away, I finally made an appointment with the doc. My usual GI guy wasn’t available so I saw a nurse practitioner. In forty-five years I don’t think I’ve ever had someone sit down and talk to me about my Crohn’s as long and thoroughly as she did. I recommend going to nurse practitioners, because they will take the time to listen to you. My GI doc is a really nice guy, but he always seems like he’s in a rush to get out of the room.
Last night I was calculating how much Humira would cost. I came up with $8000 a year. But that’s not right. The direction of this post has changed since I started writing it. I emailed James Romeo, the agent that handles my supplemental Medicare insurance. He got back to me within the hour and walked me through the coverage and the dreaded “donut hole” in Medicare prescription coverage. I’ll try to explain that in a future post. I already had a pretty good handle on that, but our conversation revealed that I’d made a mistake when I was calculating the cost in my head. Hell, it would only cost around $4000 a year. Whoopee! James says it’s the most expensive medication he’s run across. Do I get a prize?
I suppose you could make the argument that the folks at AbbVie spent a lot of money on R&D to develop Humira and they need to get that back and make a profit. I’m not too worried about them, Humira sales grossed $14 billion last year. That’s with a ‘b’.
We have saved for retirement and I thought we were going to be in great shape financially, but that number could mean we wouldn’t be able to do all the things we’ve been looking forward to.
One of the things the NP said was that continuing without more aggressive treatment might result in requiring surgery. When I think about it, from my standpoint surgery would be more cost effective than the drug. With the Medicare coverage that I have I could get to the deductible pretty fast. I could just roll the dice and hope that I didn’t have to have surgery too often. After all it hasn’t happened yet. Another argument was that I wouldn’t want to go on prednisone four or five times a year. Well I’ve needed prednisone only a handful of times in 45 years, maybe twice in the same year one time. Another temptation to just roll the dice.
Currently there is a class of drugs coming on the market called biosimilars which work like Humira and the other biologicals, but presumably would be less costly. But the bigger question is whether they work and what are the side effects.
Update on my condition
I reported in with an update for the doc, mentioning that I had pain and bloating, so now she want me to come in for a CT scan next week. Bah.
The straight poop
Some time ago I wrote about what I would and would not write about here. I stated that I my intention was to avoid politics and not talk about my health, specifically Crohn’s disease. I really don’t think anyone wants to read about me obsessing about my bowel movements. There’s that apocryphal story of Eskimos having a hundred words for snow. Well I could have the same diversity of vocabulary for my stools. No one wants to read about that.
But events have taken a turn lately and I’ve decided to change direction with them. My reason is that I’ve reached a crossroads where I need to make some decisions about how I treat this annoying companion I’ve had since I was 23. But first a little background.
As I said, I was first diagnosed when I was 23. I had just gotten back to Minneapolis from Northern Idaho, where I’d spent the summer working for the U.S. Forest Service. That fall I suddenly started having nasty diarrhea, that lasted longer than what could be explained by a bad taco. After about six months of tests and doctor bouncing, I finally got a diagnosis. I’ll talk more about that later. Crohn’s is an inflammatory disease of the intestinal tract. It’s an autoimmune condition; in other words you immune system attacks your own body. They don’t know what causes it and there’s no cure. It can manifest itself in various ugly ways, the most common is a really nasty case of the shits, accompanied by painful cramps in the gut. It can also cause inflammation in other parts of your body, including joints and other internal organs, as well as skin rashes. It can even do a symptomatic flip-flop and cause constipation when your inflamed poop chute contracts to the point of obstruction.
I’ve been lucky, I have a pretty mild case. I’ve gone all these years without being needing surgery, being hospitalized or worse. It can kill you. It comes and goes, a few months of remission, a few months of hell. It seems to really like to flare up in the fall. Stress seems to be a factor. Although there are some foods I’ve learned to avoid, diet doesn’t seem to be that much of a factor, but I intend to look into that aspect more thoroughly in the near future.
Three years ago I went into a remission that lasted until a couple of months ago, when it came back with a vengeance. I took my usual “ignore it and it might go away” approach until a couple of weeks ago when I decided I needed to come in from the cold and see my gut doctor. We did the usual drill of making sure it wasn’t some kind of bug and I started a course of prednisone to knock down the inflammation. I’m just starting week three of treatment.
Here’s the kicker. The doc wants me to start taking a more aggressive kind of medication. A new form of treatment referred to as a biologic, specifically in my case Humira. It works by dumbing down the immune system, which somehow just doesn’t sound like such a great idea to me. It has some nasty side effects, not the least of which is poverty. That’s right, poverty; because of something called the donut hole in my Medicare Part D coverage, I figure it’s going to cost me $8000 a year to use the drug. I can put up with a lot of shit for that kind of money.
This is getting a little long so I’m going to continue later. In my next post, I’m going to explore the conundrum presented by the next stage of treatment and my changing views of western medicine, the cost of health care and how I think about my health.
What would Frank do?
Alert: minor spoilers ahead.
Our latest TV binge has been Shameless, the american version of the dark British comedy, starring William Macy as Frank Gallagher. The series is perfectly named because Frank, a serial substance abuser, is truly shameless. He shamelessly lies, cheats and connives to support his habits without lifting a finger to work. I guess if he’d been born in a better neighborhood, he would have made a great CEO.
Shameless behavior isn’t limited to Frank, Steve/Jimmy steals cars and lies to his family and his lover. Sons Ian and Lip steal, swindle and deal to bring cash to their strapped family, the list goes on. But Frank is the most blatant and narcissistic. He’s a perfect role model.
We love the show. The producers shamelessly break every taboo of TV. Sometimes it’s so gross I have to look away. And then there are times when I can’t stop watching. If you’re disturbed by the human anatomy, don’t watch. The acting is stellar. Macy; Emmy Rossum as the oldest daughter valiantly trying to hold the family together; Joan Cusack gives a comedic performance for the ages as Frank’s sometime girlfriend; Emma Kenney as prepubescent daughter Debbie, leaves you wondering how such a young actor can be that good. There are no weak links in the cast.
Lately I started to think about adopting the motto, “What would Frank do?” I’ve been kind of drifting in life and I feel like having a guiding principle like that would be just what I need to straighten myself out.
For example, I was on a conference call the other day with some of my college classmates, planning our 45th reunion. We were brainstorming of ways to get more people to show up. Our school is kind of the NCAA champ of reunion attendance and people really get in the spirit, so the pressure is on if you’re a committee member. Most of the committee consists of the kind of achievement oriented, serious folks that you would expect from a school like ours. And then there’s me. Kind of a slacker by comparison, then and now.
One of the ideas we were tossing around was how to attract class athletes that might not come because of the class itself, but to the feelings they had for their team and the experience they had playing sports.
The idea, doubtlessly inspired by Frank, came into my head to get a list of all the athletes and send them notifications that they would be inducted into the Class of ’71 Sports Hall of Fame. Never mind that you rode the bench your entire career, it was your inspirational contribution to practices. Who could resist?
But, you say, we’d have to put together an award ceremony and have trophies and gimcrack of some kind. Stop being so negative! Frank wouldn’t even consider that a problem. After you get them to sign up and they arrive on campus expecting their moment of glory, just tell them, “Oh, yeah… We had to cancel that. Lack of interest. Sorry.”
But, alas, I don’t have the steadfast dedication to shamelessness that Frank displays. Too many times I’ve experienced the icy silence that follows the blurting of a brilliant, if out of box, idea. I held my tongue.
I can only dream of achieving Frank’s level of shamelessness.
Be careful what you wish for
Last Tuesday I lamented the lack of snow here. Well we got almost 9 inches yesterday. I’m sitting here drinking coffee pondering the task of blowing out the driveway. It’s really not much effort because I have a big ass snowblower. I bought it from a guy who was moving to California. He’d gotten it the year before and never really had the chance to use it. It didn’t really snow much that year. So I got a virtually new snowblower for less than half price.
I used to think shoveling a big pile of snow from my driveway was good exercise. Screw that. If I need exercise, I’ll go to the gym. I wonder what the stats are for people having heart attacks while shoveling. At least if I keel over on the treadmill at the Y, they have defibrillators and presumably people who are trained in first aid. I heard a story about a guy who was delivering papers who, when pulling into a snow covered driveway felt a strange bump, as if he’d run over something. It turned out he’d gone over the snow covered body of the homeowner, who dropped dead shoveling. Not a good way to go.
So I’ve whimped out on shoveling, capitulated to the aging process. Or have I just wised up?
Not that snow blowing is effortless. Sometimes when the snow is deep and heavy and the plow has passed, leaving a compacted berm of dirty snow and ice at the end of the driveway, the wheels of the machine just spin, unable to push through. You really have to lean into it. And there’s also some discomfort. Sometimes you just can’t avoid shooting the snow into to wind. If it’s fine and powdery, it blows back a mist of ice crystals that finds it’s way into the smallest chink in your winter armor, making it’s way to your skin. It also freezes on your face, which makes for some great Old Man Winter looks.
Not to mention the possibility of injury. Think about pairing an accident prone person like me with a set of spinning blades attached to a self propelled platform. I know there’s a deadman’s switch, but if anyone can figure out how to take advantage of a formula for disaster, it’s me.
Wish me luck.
Super Bowl, bah humbug.
It’s Super Bowl Week. I don’t give a shit. My sports fan quotient has dropped like a rock over the last few years. I think it started when Gary Anderson missed the field goal against the Falcons in ’98. Damn, was it that long ago? That was the kind of crushing disappointment that only the Vikes can dish up. We haven’t had cable TV for awhile now and around here you just can’t watch sports without cable. The Vikings are on broadcast, but football has become an interminable slog for me.
I have a real hard time getting into watching a game if I have no dog in the fight, I’m not a fan of either team. And local teams just haven’t inspired much enthusiasm of late. Being a Minnesota sports fan these days is enough to get you reaching for the SSRI’s. Damn the Gopher Men’s Hockey team is the fifth best college hockey team in the state! Men’s basketball at the U is redefining the word pathetic. The Gopher Women are doing ok, the hockey team is a dynasty, volleyball went to the final four and the basketball team has two of the most dynamic high scoring players they’ve seen.
The Gopher WBB team is the best sports entertainment bargain in town. I get two season tickets for $400 and get to watch sixteen competitive games at Williams Arena. I love the atmosphere at Williams Arena.
Going to a baseball game at Target Field is fun, but expensive.
But football? Watching steroid crazed behemoths stand around for three hours, interspersed with a hundred commercials, is perhaps the very essence of boredom. Oh, there is eleven minutes of actual action going on in that three hours. I guess if you’re a sadist you might get some enjoyment out of the fact that you’re watching young men doom themselves a downward spiral of dementia by repeatedly smashing their heads together it might be entertaining. And of course there are probably some who enjoy the grunting. But I guess I just don’t get it.
So while almost 200 million folks are watching the Super Bowl on Sunday, we will probably be at Costco avoiding the crowd.
The end of an era
My wife has been working for the same company for longer than we’ve been married. And we’ve been married a long time. That is until last Wednesday when they laid her off. Thirty-nine years at the same company. Thirty-nine years at the same ad agency, no less, where people don’t usually stay for four years, no less forty.
It wasn’t unexpected and it’s not really a bad thing. We’re more than OK financially, although health insurance will suddenly get a lot more expensive. Becky has worked full-time since high school, this will be a nice opportunity for her to kick back and think about what she wants to do with the rest of her life. I should note that I learned a long time ago to never assume to speak for what she’s feeling or thinking. Maybe in a future post I should interview her. But one thing I know for sure, it’s going to be different around here.
I’m out of the house for the better part of four days a week, I work three days at the newspaper and go to Coco to hang out with my WordPress buds on Wednesdays. But this does mean we’ll be spending considerably more time together. This could be a good thing, or a bad thing. I know I can be a pretty irritating person to be around for long periods of time. That’s all I’m going to say about that.
I get a headache every time I start to think about what we’re going to do about health insurance and how I’m going to figure out the Medicare alphabet puzzle. A B C D it looks kind of impenetrable at first glance. I promise that I won’t write any advice posts about the process, there’s enough confusion out there already, I don’t need to add to it.
Unless of course I come up with some very specific nugget of knowledge that every old duffer should know.
The dreaded Wintry Mix
Variable precipitation consisting of rain, freezing rain, sleet, or snow.
I can take a nice fluffy snowfall. It’s light and pristine, easy to shovel and get off the roads. It’s not usually hard to drive on.
What I hate is this. First it rains for an hour and then the rain starts to freeze, and then it turns to sleet, whatever that is, and then heavy, clumpy snow than seems to come down in pellets rather than flakes. If you are driving through this you find that you are getting more miles to the gallon of gas than you are of windshield washing fluid.
And then it turns cold. The layer of sodden slush freezes as hard as a rock. The roads become skating rinks and the commute becomes a destruction derby. If you are unfortunate enough to have left your car outside, it’s covered with heavy snow that, once removed, reveals a layer of ice encasing the entire vehicle. You can’t scrape it, it has to be chipped off. And then if you’re really lucky, your locks are frozen shut, which is a good thing, because now you don’t have to drive in it.
The real fun happens when the temperature drops fast and deep, into single digits or less, before the plows can get all of the muck removed. The surface of the roads are like a skating rink on the surface of the moon. Deep ruts and sharp ridges cause you wheels to spin and your car to bounce like a bizarre carnival ride.
If you’re really lucky, the temperature stays below freezing for a couple of months, just to extend the fun. If you happen to get a dusting of snow on top of that ice, it becomes almost impossible to move. Any Minnesotan is familiar with the scream of spinning wheels as frustrated drivers race their engines while going nowhere.
We haven’t had a really good wintry mix disaster yet this year, but cheer up, there’s lots of winter left.
Snow time like the present
The East Coast got nailed by a huge snow storm this week and the internet is saturated with pictures and stories of white disaster. It’s snowing here, just a few flakes, nothing special. It’s been snowing lightly since late yesterday. I can sympathize with the easterners, nobody likes to be completely buried in it, and they aren’t as prepared as we are to deal with it. It sucks to be snowed in. I just would like to see some balance. Minnesota in the winter without snow is no fun, send some our way.
We have snow, but not much. And it’s come in tiny doses. I’ve only had to use my snow blower once. In the morning I go out and look at the driveway and it’s covered with snow, but only thin coating, less than an inch. I just can’t justify firing up the beast for that. It would be a declaration of weakness that even I couldn’t tolerate. But it takes longer to shovel a dusting that it does to clear off six inches. (I originally wrote “blow six inches,” but I that would make Rache just a little too gleeful.) There are also hazards involved in shovelling, besides the classics like slipped disks and heart attacks, I’ve had fluke accidents with unpleasant consequences.
There are cracks in my driveway that can be invisible after a light snowfall. When the snow is fluffy I use a wide shovel with a long handle that’s designed to push the snow and not really scoop it up and throw it. I get kind of nonchalant when I’m in that shoveling mode, holding the handle low and moving fast. More than once I’ve hit a crack in the concrete, bringing the shovel to a sudden stop while my body keeps going. There have been times when the position of the handle results in it being driven into that most sensitive area of a man’s anatomy.
So really, if it’s going to snow, at least give me enough to fire up the beast.
Fable has it that the Eskimos (that’s probably not the PC term anymore) have fifty, or however many, words for snow. We have “wintery mix.” Tomorrow I’m going to talk about that kind of snowstorm and why it’s the worst.
Dinner and a movie, not in that order.
Yesterday afternoon we went to see The Revenant. I don’t want to spoil anything for you, but I doubt if you would be surprised to hear that this two and a half hour film builds to a pretty dramatic, tense climax. That’s a lot of footage of Leonardo DiCaprio having a really bad hair day. We went to the newly remodelled Plymouth Theater, which has reclining seats that are like Barcaloungers on steroids. Movies had better be entertaining or the audience will certainly be napping.
Leo’s interminable slog through the wilderness managed to keep me just above the snore zone. I was told by someone that the director claimed that there has never been a movie made like this one. I’m not sure what aspect of it he was referring to, but if that’s true, why did we pretty much know what the outcome was going to be. I’m not necessarily complaining, I enjoy a good survival and revenge flick as much as the next person. And the locations were spectacular.
About a hundred and thirtyfive minutes in, just as the final, final climax was starting, Beck leaned over to whisper in my ear. I know it’s rude, but we try to be fairly quiet. I thought to make some comment about action on the screen.
I leaned toward her and heard, “Weren’t we supposed to be at Becker’s tonight?”
Oh crap. I knew this was somehow my fault, I’m the organizationally challenged one who has a very long record of space outs.
We’d been invited to dinner hosted by the world’s greatest entertainers, along with two other couples that whose company we enjoy. One does not refuse an invitation to the Becker’s.
Although I had put it on the online calendar, I hadn’t put it on the paper calendar taped to the refrigerator.
“When?”
“Now! Should we just duck out now?”
Hell no! I’m not investing this much time in a movie and not see the end!”
We were in weekend at home mode, looking pretty rough. Not as bad as Leo, but for suburbanites, pretty rough. We would need to go home and change. We usually are underdressed by comparison, but this would be taking slovenliness to the extreme.
We bolted from the theater as soon as the credits started to roll, jumped in the car, called our hosts to beg forgiveness and let them know we’d be late. Rushed home, changed clothes and rushed back out the door, we made it to their house, only about a half hour late.
The movie end of the movie was exciting, dramatic and tense. But the real adrenalin shot came from our dash to dinner.