A leg to stand on

Caveat: If you’re here because you Googled the term “erectile dysfunction,” you’re in the wrong place.

Caveat #2: Every statement in here is my opinion.  I have not done any research on statistics to support my statements, but if you have any numbers to either support or refute what I’m saying, I am more than happy to hear them.  Make sure you’re polite, or I’ll delete your comment without warning.  I won’t tolerate nonsense.

My son is an amputee.  He’s 18 years old.  His left leg was amputated 8 years ago because he had cancer.  Actually, he’s had cancer three times, and his leg was amputated the second time he had cancer.  The third time he had cancer, they removed the offending lymph node, radiated him and put him on drugs for 3.5 years.  These drugs hopefully did the trick — he’s now cancer-free, but he still doesn’t have his left leg back.

I just spent days drafting a letter to our insurance company explaining why their denial of coverage for a microprocessor knee was unreasonable.

Insurance companies have a strong history of providing prosthetics that return an amputee to what they call “minimal basic function.”  There is a large chasm between what an insurance company considers to be minimally basic and what an amputee considers to be minimally basic.

What would you consider to be basic and minimal for an 18-year-old?  I think it’s pretty basic to be able to walk across the floor with the expectation that you won’t fall down, and it’s pretty minimal to expect to be able to climb stairs in a normal fashion.  My son doesn’t enjoy either of these basic, minimal functions.

Would running away from danger be considered basic or minimal?  He can’t do that, either.

How about remaining upright should someone accidentally bump into you?  That’s pretty basic … fairly minimal, I would say.

Let’s say you’re standing on an L-train platform in Chicago.  It’s rush hour.  The train is coming and someone’s in a hurry to catch that train because they’re late for work.  Let’s just say you have one good leg to stand on and you’re bumped while you’re standing there with a backpack on your back.  Let’s just say it would be pretty darn basic to be able to catch yourself before you fall on the tracks.

The other requirement insurance companies like to wave around is “Medically Necessary.”  This term is open to so much interpretation, and I imagine it’s pretty easy to categorize a lot of procedures, drugs and durable medical equipment as “not medically necessary,” but when an insurance company categorizes erectile dysfunction drugs to be medically necessary but denies coverage for microprocessor knees, you have to wonder who is setting their priorities.  I do not minimize a woman’s devastation when a mastectomy is required, but I think any woman would agree that you can do pretty much anything without breasts, yet reconstructive surgery is covered by most insurance plans.

Why isn’t the new technology that has become available for amputees not considered as important as ED drugs,  breast reconstruction and even birth control?

With a microprocessor knee, an amputee can walk with a normal gait at a normal pace, and that removes strain on their hips, back and the joints in their other leg. They can move more freely and that will encourage them to be more active which will, in turn, allow them to build their stamina and strength.  All of these things work to prevent severe orthopedic problems, cardiac disease, Type II diabetes, depression, and — by George — I bet it helps to prevent erectile dysfunction or breast cancer, too!  Win-win!

I know I’m pretty biased about this issue, but I like to think that I’m looking at this in a balanced fashion.  I would want these things for any amputee even if he or she wasn’t my child.  I want these things for anyone who has gone through the trauma of sacrificing a limb to save their life or the lives of others.  That’s an enormous sacrifice, and when a company with a $9 billion revenue stream says they’re not willing to sacrifice a small percentage of their revenue to return these individuals to a level of function they’d surely demand for themselves, then I call foul.

We are still waiting to hear the decision on our appeal.  I might be jumping the gun here with my rant.  I just find it so frustrating that we have to play this game.

UPDATE 6 YEARS LATER:

The insurance company agreed with me, and my son has enjoyed the functionality of a Genium knee from the time he started college until now. It has made all the difference in his mobility. He’s a happy, healthy, self-supporting adult now. What more can a parent ask for?!

I’m not sure why I didn’t post the entry above when I wrote it, but I didn’t. Having it here will hopefully help someone else who is getting ready to write an appeal to their insurance company.

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Posted in Amputees/Prosthetics, Family | Tagged , , | 1 Comment

Wow.

I have to be the world’s worst blogger. It’s been almost four years since I posted anything.

A lot has happened in the past four years. Most importantly, my husband retired earlier this year, and we’ve begun traveling the country in our brand spanking new 5th wheel RV. We started out by spending most of the winter in Arizona. That was fun, and we were still talking to each other when we got back home.

We spent a few months hanging out at home, and I watched my husband enjoy his newly-acquired free-time by getting caught up on on the long list of things he never had time for when he was working and traveling.

 

Big Hole Big Foot

Fig. 1 Dug in < 1 min. I have big feet.

Somewhere along the way, we lost our minds and got another puppy. He’s about 8 months old right now, and the puppy I first wrote about when I first started this blog is an “old lady” at 7-1/2 years old. She’s still the most awesome dog, but please don’t tell the other one. He’s still young and learning. I’m still not sure we made the right decision.This little guy is a 30-lb bundle of energy. (Fig. 1) I’m also pretty sure he’s smarter than we are.

Treasure IsleAs I write this, we’re sitting alongside Fish Creek at Treasure Isle RV Park near Rome, NY. This is a medium-size RV park set back in a clearing surrounded by the very twisty Fish Creek. There are a lot of seasonal lots here.

For the uninitiated, “seasonal” in RV-speak means that they’ve parked their rig here in a semi-permanent fashion, and this is where they come to spend the season — or, perhaps, the weekends of the season. There are about a dozen “overnight” spots. The one we’re in backs up to the creek and is shaded and very pleasant. The park is quiet and very family friendly. Just about everyone here has a dog or two, but there doesn’t seem to be a lot of barking going on.

The owners — Mark and Karina — couldn’t be nicer. They’ve been running the place for a couple of years now, and according to one of their newer seasonal folks, they’ve already made a number of improvements. I’m guessing more are on the way! I might suggest a dog park / run to them as we depart. It would have been awesome to let the doggos run off some steam while we visited.

Other things in the pipeline: a new website / endeavor with my genealogy friend. I don’t want to go into detail yet, but we’re pretty sure we have an awesome idea that could grow into something important. We both just have to get out of “great idea!” mode and into implementation mode. This is a hurdle for both of us. Wish us luck!

Oh, and thanks for stopping by! I’ll try not to make it another four years until my next post. No promises, though.

 

Posted in Family, RV, Travel | Leave a comment

Why I’m Here

When my children were young, I spent my time teaching them and finding out exactly how much I didn’t know. Now that they’re one step shy of being adults, I can no longer use them as an excuse to learn new things. So, I have to make learning opportunities for myself, and what fun is learning something new if you can’t share it with somebody?! So, welcome to my virtual “playground.” This is where I get to play with ideas and share them with you.

I always have podcasts on in the car and when I’m working around the house, and most of them deal with science — food science, psychology, medicine, why and how things came to be. Some people might say I have a tendency to over-analyze things. It’s not true. Don’t listen to them. I just like to look at things from every direction.

When I sit down and write about something, it helps me to connect the dots. While I’m at it, I might as well put it out here and share it. So, come on in. Grab a cup o’ joe or a spot of tea and let’s figure this stuff out together!

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The view from over here.

So, here’s the thing: September is Childhood Cancer Awareness month.

We are a cancer family. For the past 14 years, we’ve been a cancer family. We’re very aware. People around us are very aware. Our experience is a reminder that they are also vulnerable. Nobody likes to think about it, including me and everyone else in our family, especially our very own survivor.

We don’t like being defined by cancer and our experiences with it. On the other hand, we — perhaps, just I — feel that it’s important for the rest of the world to understand what it’s like to be a cancer family. Why? Because most people think that after a few years of survival, you stop worrying about it and stop talking about it so much, and everything is back to hunky-dory. Except that’s not true.

We might be able to put it all away most of the time, but sometimes something will come up in conversation, or you start trying to remember when this, that or the other thing happened, and you find yourself telling time by cancer or saying things like, “So, you know about my son, right?” when you have something to say, but it won’t make sense if they don’t know. When they don’t know, then you need to explain that he is a cancer survivor and yadda yadda yadda. Blah blah blah. The conversation is now side-tracked. I get sick of hearing myself say it. Sometimes I just keep my mouth shut, and then I can pretend we’re just like everybody else.

If you know a cancer family, what you might not realize is that they are still living with this disease all of the time, even though it’s “gone.” It leaves an indelible mark, and you’re never absolutely sure that it’s really gone. You keep a watchful eye on every member of your family, watching to make sure it’s not hiding somewhere, lurking in the dark. Cancer and paranoia are best friends.

The fear creeps around the back hallways of our minds, and about every six months or so, the doctors take us by the hand and force us to actually go in there and look around. I’m grateful to say that not much goes on there these days — just some dusty memories that gaze back at us, remembering when we lived there. Sometimes, something will come up that doesn’t look quite right, and then we have to venture a little further down those hallways and spend some time checking for cracks and making sure that the weak spots are not any weaker. You can’t go in there without waking up the demons that sleep there. They come alive and taunt you into imagining the worst. They dance in front of you, grab at you, try to pull you in. I’ve gotten very good at walking away, but the door won’t close. You can still see the light and hear the noise. You just have to turn around and leave as quickly as you can and forget about it until the next time you’re forced to walk down there again.

So, yeah. It’s Childhood Cancer Awareness month. That one month out of the year when all of us over here impossibly try to tell all of you over there what it’s like and implore you to help us. If you know someone who has had a child with cancer, just remember that while they seem okay — and they mostly are — they don’t have the luxury of just forgetting about it 11 months of the year. Just because their child looks and acts healthy doesn’t mean that they don’t think about it every day in some way. Make a point to know when their child is going for a checkup, and stay open to listening when they need to talk about it. Everybody — no matter what they’re going through — needs to know they aren’t alone.

Posted in Childhood Cancer, CureSearch, Family | Tagged , | 7 Comments

On Being Christian …

I’d just like to clarify a few things. More and more often, I feel like Christians and Christianity are being disparaged by people who only know Christians by what they hear on the news. Generally speaking, Christians have become poorly represented in the media, and the Internet is full of haters who are only interested in one side of the story.

First of all, I’d like to say that you are free to believe whatever it is you want to believe — whether or not you’re right. And so am I. You don’t have to agree with me, but you do have the obligation as a fellow human being to respect me and my beliefs.  Just as I do you and yours. I know that nothing I say is going to change your mind. Likewise, nothing you say is going to change my mind, either. I know you find this frustrating, but stop calling me names. I’m not stupid, bigoted, ignorant or narrow-minded. I’m just as interested in scientific advancements and racial/gender equality as you are. I’m also not opposed to changing my mind on issues when it becomes obvious that I’m wrong. I don’t hate you because your skin is a different color, and I don’t care who you love as long as you’re not abusing or subjugating anyone.  I love science, and I try really hard to understand both sides of an issue before I make up my mind about which side I want to stand on.

What bothers me the most is that I cannot explain to you the peace and joy I’ve experienced because of my faith. I cannot effectively convey my experiences to you. I’ve tried, and you just smile politely and go away thinking about how quaint I am, and I go away thinking about how sad it is that you can’t feel what I have felt.

I am not and never will be a good apologist for Christianity, but here are a few things — in no particular order — that I think about that you might find interesting and contrary to how you view the Christian faith:

  • Jesus hung around with the people on the fringe — thieves, prostitutes, beggars, lepers, etc. These were the people who needed him the most. He wanted to make their lives better. He didn’t hold their sins against them. He encouraged them, healed them and simply asked them to love one another as they loved themselves and to stop doing the things that were hurting them and those around them. He held in disdain the aristocracy of his time, and they made him the most angry. That’s where the word “hypocrites” came from — they would go to Temple and act one way, but as soon as they walked out the door, they were back to wielding their power against their enemies, the poor and otherwise less fortunate. This still happens, and it wrongfully happens in the name of God. The human race can be so stupid.
  • I believe that God is our creator, which means that he created and loves each and every one of us. Again, it doesn’t matter what color your skin is or whether you’re gay or straight. It’s human beings who have created the biases present in our cultures. Again, we’re supposed to love one another as we love ourselves. We’re not very good at that.
  • When I say that God is our creator, I don’t believe that he sculpted us out of clay and then breathed life in. I believe that somewhere along the way, He set events into motion that allowed the human race to evolve into where we are now. In the process, he gave us free will to make our own choices. He wants us to love him as much as He loves us, but again, we’re not very good at that. That’s why we often abuse our free will and make stupid decisions that hurt people and actually turn people away from Him. Still, He lets us keep our free will because if we don’t come to Him because we want to, what good is it?
  • I don’t believe that The Bible should be taken literally. I believe that the Old Testament was written to explain the universe to us in a way we could understand at the time it was written. Just as we write and read stories to our children to explain the world to them, God gave us only as much as we could understand at the time. God sent Jesus to us to correct the misunderstandings that had become a way of life, and he did away with the ritualistic laws that were instituted by man. Again, he did this by relating to us in a way we could understand at the time — i.e., He spilled His own blood as a final sacrifice so we could feel clean. Before He died, He gave us sacraments that would allow us to renew ourselves in ways that didn’t involve slaughtering animals or our first borns. Jesus was one cool dude. I’m sure you would have liked him. He loves you.
  • I also believe in evolution. Are you surprised by that? I also believe in the Big Bang. Crazy, isn’t it? Believing in either one of these things does not make God impossible. If you understand how evolution works, then you will know that somewhere along the way, a mutation occurred and BAM: humans. Same thing goes for the Big Bang. Forces in the universe came together and what ensued is just too miraculous for me to believe it was a happy accident. It’s OK if you don’t believe this. One of us is wrong and one of us is right — or neither. We’ll probably never know which one of us is right, so let’s just agree to disagree. That way we can enjoy each other’s company without arguing about something that neither one of us can prove.
  • Our universe and everything in it is constructed in such an orderly fashion that I just can’t believe it’s a matter of coincidence. Isn’t it odd that the makeup of a galaxy is so similar to that of an atom? For example, the Golden Ratio can be seen in the measurements of a DNA molecule all the way up to the arrangement of the arms of a spiral galaxy like the Milky Way.
  • Every anti-Christian, agnostic and atheist I know was turned off to faith and religion by a misguided fellow human being who was acting in the name of a faith they didn’t understand. That doesn’t make faith wrong. That makes the human being wrong and far more damaging than someone who has no faith at all.

A final word: If you’re right, and there is no God then, as a Christian, I have lived my life well. Hopefully, I’ve made someone’s life better along the way, and I can die happy knowing that I have tried to live a good life in service to others. However, if I’m right, and God is real, I hope something happens to change your mind. Otherwise, I’m really going to miss you.

 

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The Chronicles of Insomnia

I’m awake. Maybe it’s the ringing in my ears or the wind outside or any of a dozen notions that are rolling around in my head. Whatever it is, instead of fighting it, I just got up. Fighting insomnia is a losing battle. I try not to look at the clock, but I can’t help myself. Then, I’m counting the hours until my alarm goes off, and the math keeps me awake. Damn you, math.

So, I was listening to a podcast about the placebo effect yesterday. Ironically — or maybe to the point — the topic was perceived quality of sleep. Test subjects were told they would be given an EMG that would be able to tell whether or not they had a good night’s sleep. It all looked technically accurate, but the EMG was really a sham. The researchers really just wanted to test whether or not the suggestion of a good or poor night’s sleep was enough to influence an individual’s performance on cognitive testing.

When the study participants arrived, they were asked whether or not they’d had a good night’s sleep the night before. What surprised the researchers was that it didn’t matter whether or not the individuals thought they had a good night’s sleep. What mattered was what the researcher reported to the participants about the outcome of their EMG. If the researcher said that the EMG indicated the participant was well-rested, the participant did better on the test even if they had reported a poor night’s sleep. Ultimately, the study showed that as long as an authority figure presented the suggestion, participants would believe it. In other words, self-perception didn’t have an effect. Plenty of subjects reported they’d had a great night’s sleep, but if they were in the group who were told by the researcher that their EMG indicated a poor night’s sleep, they didn’t do as well on the test.

So, this whole notion that we are so susceptible to the power of suggestion has my mind churning. And that’s perhaps why I’m not sleeping. Ironic. Yeah, I guess it is.

I have so many questions. Does awareness of the placebo effect cause a person to be so cynical that it can no longer help them? Can you still benefit from a placebo if you know you might have gotten a placebo? What about all the rubbish on the Internet? There are all sorts of claims made about all sorts of things, and while most of it is rubbish, what does that matter if the suggestion that something works actually helps someone, as long as it doesn’t kill them, that is?

So after hearing this podcast on the placebo effect, I had an idea. What if this susceptibility to the power of suggestion not only allows us to benefit from placebos, but what if it also causes ailments? According to the research, we have actual physiologic reactions to suggestions. For example, if an individual is given a low-calorie milkshake, but they’re told it’s a high-calorie milkshake, the physiologic changes in their body are the same as if they ate an actual high-calorie milkshake.

In Radiolab’s Placebo episode, one of the doctors was telling about how we have receptors in our brains for morphine and other opioids, and when we’re given a placebo, the opioid receptors in our brains are activated. Did you get that? You are given a sugar pill, told that it’s a pain killer, and your brain says, “Hey, morphine!!!” Put another way: We have within ourselves the power to fix ourselves.

Well, what if the opposite is true? What I mean is, what if we make ourselves sick by the same power of suggestion that allows us to benefit from the placebo effect? I’m not talking about your run-of-the-mill hypochondriac. We all have that Aunt Marge in our lives who thinks that every sniffle is typhoid (and please, God, don’t let me be her). I’m talking about the suggestions we hear every day from whatever mode of media we’re allowing into our heads — news reports on the latest culprit in the obesity epidemic, web articles on chemicals in our food that are sure to kill us all, GMOs, corn, soybeans, wheat, fossil fuels, McDonald’s french fries. We are bombarded with tiny little snippets of information, and we don’t always have the time to get the whole story. We develop our own perception of what we’ve heard, and that perception develops into a suggestion to our brains. Well, what if those notions are enough to trigger changes in our brains and bodies because we believe, on some level, what we’ve heard?

Somebody who is smarter than me is going to have to take up the gauntlet and figure this stuff out, and when they do, I’m sure I’ll wake up in the middle of the night and read about it.

I hear my family waking up to get the day started. Time to go fill my coffee cup and join them. I predict a nap coming on later. I wish that researcher was here to tell me that I had a good night’s sleep.

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Visions of Sugar Plums

I’m sure traditional sugarplums are quite delicious (thank you, Alton Brown), but these are prettier, much better for you, so tasty, and they inspired me to get the camera out again.

It was just about this time last year that I started getting more serious about photography.  I haven’t been spending much time with the camera for the past few months, but the lights and colors of the season are getting me fired up again.  That holiday bokeh always sucks me in.  So, I’m going to ride this wave of inspiration and get the rest of the Christmas decorating done today.

Posted in 'tis the Season, Food, Photography | 2 Comments