Category Archives: Health

Hypochondriac Humor

If someone asked me to name the scene a movie that most resonated with me, this would be it. My name is Bob and I am a hypochondriac. My gravestone will read, “I told you I was sick.”

So of course the fact that I was suffering from pain and bloating over the weekend, and that the NP thought I needed a CT scan to check for an obstruction sent me on a wild spiral of anxiety.  Nevermind that I’ve had all the symptoms before and it proved to be nothing more than constipation, I convinced myself that I had a huge tumor lurking in my intestines and that I should stop buying green bananas.

At one time in my life hypochondria almost took over my life. Every little lump or sore was a death sentence that I would obsess over relentlessly. I obsessed over the possibility that I was insane because I was obsessing so much. Finally I went to a shrink and he put me on Celexa, an anti-anxiety and anti-depression medication. I got almost instant relief. I probably started dangerously ignoring symptoms. But alas the drug had some unpleasant side effects. Imagine that. So a few months ago I decided to wean myself off of it, which I did over a period of a couple of months. Until now the I’ve not been obsessing about my health. But Crohn’s and gut problems always get me worked up so I was spinning down the rabbit hole of paranoia for a few days.

The scan came back clean. You might have seen me skipping down 4th Avenue yesterday afternoon.

I’m not whining. Am I?

doubtIt dawns on me these recent posts on Crohn’s might come off as whining. Poor me, I have a chronic condition and it’s going to cost me a lot of money to treat it. If that’s the impression I’ve given, I apologize.

I don’t have anything to whine about really. My Crohn’s is about as mild a case as you can get. I’ve never had surgery or even been hospitalized for it. Sure I’ve crapped in my pants a few times and have gone through some miserable periods, but all you  need to do is follow the Crohn’s hashtag on Twitter and you will realize I’m lucky. You can die from this. Young people are hospitalized and having colostomies and finding themselves unable to work. Not eating for days because it causes too much pain. So really I don’t have much to complain about. I should be thankful.

I have a couple of reasons to write about my Crohn’s disease adventures. One is that I need something meaningful to write here, and although talking about one’s shit is pretty personal, it gives me the opportunity to talk about things beyond what I had for dinner and what TV I’m watching. The other is that I hope I can help others with Crohn’s by providing information and telling my story.

I won’t be writing exclusively about Crohn’s here. I’ll probably still write about TV and what I had for dinner, review a book or movie, post some artwork and keep you posted about my battle with the bunnies who use my garden as a smogasbord.

Stethoscope and money in soft light for Medical cost saving or in business marketing concept

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.

Meanwhile back at the ranch.

IMG_1466To say there’s been a lot going on in my life since my last post is like saying the Titanic sustained some minor damage from an iceberg hit. I got a new job. I broke my hip, my daughter got married, I learned to surf. Ok that last one is a lie.

In August I was contacted by on of my web clients, The Minnesota Spokesman-Recorder,  asking for me to recommend a print designer. The Spokesman-Recorder is a weekly newspaper for the African-American community, it’s the oldest Black owned business in Minnesota. Their designer had left for another job and they were looking for someone who could take over and help them with laying out the paper and handle collateral design projects.

I’ve been tossing around the possibility of getting a part-time job, a few hours a week to supplement my retirement income. But given the fact that I can’t really bend my knees or be on my feet for long periods of time, I’m kind of limited to what I can do. I already failed as a barista. But doing some design work in-house a few days a week would be perfect. So I recommended myself. I’ve been working there for a couple of months now and I really enjoy it, great people to work with, perfect hours and a regular paycheck. Between Social Security, my freelance income and this, I’m almost as much as I did when I retired.

Actually I didn’t break my hip. I broke my greater trochanter. Which is the little nub on the outside of the top of the femur where the glutes connect to your leg to articulate your hip. If you’re walking through a house that has a sunken dining room, looking back over your shoulder talking, it’s the part that hits the floor first when you miss the step. Yup, that’s what I did. In Chicago at the rental house we were staying at, two days before the wedding. I had the pleasure of escorting my daughter down the aisle on crutches.

The fracture wasn’t displaced and didn’t require surgery. They didn’t see the crack on the X-rays in Chicago, they diagnosed it as a bone bruise. It wasn’t until the pain wasn’t getting any better and I went to a local bone doc who discovered the break. I didn’t have much pain in resting position, but there were certain movements that gave me a breathtaking shot of pain. I was told to use crutches until the pain went away and start physical therapy. It’s been about five weeks now and the pain has pretty much gone away, it seems to be getting better by the day. I’m down to one crutch now, and sometimes I find myself walking around without it. I’m hoping to be crutchless next week for the Gopher Women’s Basketball opener.

Yes, Lucia and David got married. I’m going to save this story for another post.

Pills

skeleton

I have Crohn’s disease. I take pills. Twelve a day. Really expensive pills. Thank God for insurance. Specifically, I take Asacol, which is Mesalamine wrapped up in a plastic tablet that’s designed to keep it from releasing the good stuff before it gets to the target area in my poop pipe. It works, kind of. I have long periods of remission punctuated by some very long periods of, let’s just say, discomfort. When that happens I get to take a course of Prednisone , which is similar to making a pact with the devil. Fortunately I’ve been in a fairly long period of remission (knock wood) I think partially due to some diet changes and some supplements that my doctor probably would view as the product of witchcraft, but that’s another story.

Continue reading Pills

Overheard at the Nursing Home

Yesterday I visited my friend and neighbor who is recuperating from surgery at a nearby rehab center. It’s the same place that I spent a week in after I broke my hip. If you have to be in a place like that, it’s a pretty good place to be. The people were really great and my therapist Kari set me on the road to an amazing recovery. I not only had a broken hip, but at the time I was minus a knee. They had to remove my first artificial one for about six weeks because of an infection. I fell while on crutches and broke my hip. At that point I wasn’t sure if I would ever walk straight again.

Visiting my neighbor was sobering, he’s in pretty bad shape. That’s another blog. I was feeling pretty down as I left him, but between his room and the front door of the center, I had an encounter that left me laughing to myself the rest of the day.

In order to get from the rehab area of the building to the exit, you have to pass through the common area of the nursing home section. As I entered two women in wheelchairs were meeting in the hallway, one was being pushed by an attendant ant the other was in a motorized chair. They looked to be well into their eighties at least. As they passed I couldn’t help overhearing their conversation. For the sake of the story I’ll call them Mabel and Alice.

Mabel, in a teasing tone, “What’s this I hear about you….”  I didn’t catch the end of the sentence.

Alice replies, loudly, “Oh that’s bullshit!”

I proceed to the elevator and press the down button, not realizing that it had a security code so the inmates couldn’t escape. Fortunately one of the nurses came along and let me out, I was beginning to think they were going to keep me. But the delay was a good thing because it resulted in my standing there long enough to hear another exchange with Alice. She had been motoring along right behind me and stopped at the nurse’s desk, where an elderly gent we’ll call George was standing, conversing with the pretty young aid who was holding down the fort. Speaking to George she cracked, “Are you paying her by the hour to sit there and listen to you talk?

“What?”

“Are you paying this poor girl by the hour to listen to your dumb stories?”

“Who put a nickel in you?”

“You did.”

George must have been at a loss for a good comeback, because as I entered the elevator, he was grumbling away in German.

Dementia Check

Yesterday I went to the club this morning and put in 45 minutes on the treadmill, at a pretty good pace for me. Between 3 and 4 miles per hour most of the way. That’s a huge improvement over where I was two years ago, or even three months ago. But the workout left me questioning my sanity a bit. I was working out to Rock’n’Roll on the iPod and when Los Lobos live version of Marie Marie came on I pumped the speed up to 4 mph, which is a pretty good walking clip. When it was over a slow Bonnie Raitt song came on and I slowed down to it’s tempo. I was getting into Bonnie’s slide work and kind of closed my eyes. When I opened the up again, the treadmill’s control panel was running away from me. I had obviously slowed down too much and didn’t realize it. I was about to go off the back end, not able to reach the shutoff and too little time to catch up, and a concrete wall right behind me. I surprised myself by thinking fast enough to kick my legs out from under me, get my feet on the floor behind me and stop my fall with hands on either side of the moving pathway, on the edges of the treadmill. Thank God I’ve been working out, I never thought I’d attain that level of agility again after the year of the knee.

So I get plus marks for the physical realm for the 45 minutes of walking that endless highway and having the agility to to fall down without injury. I’ll even give myself a point in the mental column for realizing, in that split second before I went flying into the concrete block wall behind me, what I had to do in order to make a safe landing. But I’m a little concerned with the mental process that put me in that situation in the first place.