Our hopes were that the surgery would reduce, if not eliminate, the amount of pain he was in. Instead, in the subsequent 2 years, his pain has increased. I've since learned that this isn't uncommon, but knowing that doesn't make it easier to live with.

Believe it or not, I still think we're among the fortunate ones. I work in a field that allows us to maintain our standard of living (which means, in our case, we've kept our house and our health insurance!). He receives disability insurance payments from his employer's policy. He has had some wonderful doctors during this time (and one stinker, which I'll describe below). Most importantly, there is still hope that something can be done to improve his condition - more on that later, too.

Our Lives
So there's the obligatory paragraph where I count my blessings; this is where I try to describe what our lives are like.

For Eddie, the most difficult thing is that he's no longer able to work. Indeed, after a year of impatiently waiting for him to come back, his company finally terminated him so at this point he doesn't have a job waiting for him in the event of recovery. Although we used to joke, early in our marriage, about me earning enough to support him, this wasn't the way we wanted to do it. Our hope was that I would work, and he would be a stay-at-home father when we had kids. Until then, he'd stay at home and fish on our lake, or play on the computer. We've put our child-bearing plans on hold; it's hard to be a stay-at-home father when you can't even lift an infant. His fishing days are few and far between. He can't sit for very long without discomfort, and the medications he's on make it very hard to concentrate, so the computer isn't an option either.

So he does what he can to avoid going mad from boredom - and gets frustrated because what he can do physically is just a fraction of what his mind dreams of. When sitting, standing and laying down for any length of time increase your pain, it's very hard to do much of anything. Although his daughter from his first marriage, and her boyfriend, live with us, he's usually home alone during the day since all of us work. By the time I get home from work, he's desperate for human contact. Unfortunately, we're the only ones in our family who live in this area; our closest immediate family member lives 250 miles south of us, and the rest of them are even farther away. Sometimes the isolation is the hardest thing to bear - for both of us. Although we both have friends, none of them live close by either. (In the Chicago suburbs, nothing is close by, unless it's across the street!) Besides, when one can't do a great deal, one's friends tend to drift away. They're great in a crisis, but long-haul recoveries are usually left to family members.

In other words, we're US Sprint's favorite customer! (Although I personally think they could give us just a few more bonuses and rewards; I'm starting to think that we single-handedly put more than one Sprint executive's child through college.)

It's this isolation, combined with what I perceive to be a total lack of comprehension on the part of the rest of the world, that has made this so hard. Eddie looks okay, people reason, and he can put up a good facade for a couple of hours at a time, so his inactivity, his limitations, are hard to understand. In conversation, while trying to explain to someone for the umpteenth time why we can't do something - why we can't even plan an activity in advance - I find myself eventually saying in frustration, "You just don't get it. If you haven't been there, you can't understand."

Acute Pain Vs. Chronic Pain
It's not that "pain" is an alien concept - everyone has experienced pain, in one form or another, during their lives. It's the "chronic" part that is so difficult to understand. Most people, when they experience pain, experience it in acute episodes; toothaches, appendicitis, childbirth to give a few examples. Perhaps they've strained a muscle that took a few weeks to heal, or broke a bone that required a cast for a month or so. It's still acute pain; there is a beginning and an end. There is recover and a resumption of normal activities. It goes away.

Chronic pain doesn't go away. There's a beginning, but no end, only a difference in pain level.

Since Eddie's surgery, he rates his good days as days when his pain is down around a 4 or 5 on a 10 point scale. ("1" being no pain at all, "10" being "Let's see if Dr. Kevorkian is available.) A 5 point day means he can go to the grocery store without me, as long as he doesn't stay too long or have to carry in too much. He can unload the dishwasher and reload it. He can start dinner. Or, to put it another way, he probably only has to take 3 or 4 pain pills the entire day. He's on Vicodin 10/500, a combination of Tylenol (500mgs) and a synthetic derivative of Codiene called Hydrocodone (10mgs), similar to Tylenol #3, but a stronger dosage per tablet. Again, to put this in perspective, when a person has their wisdom teeth removed, their dentist will usually prescribe Vicodin 2.5/250 - or even 5/500 - to be taken 3-4 times a day.

His bad days are usually around an 8.5, or sometimes a 9. Those are the days when he sleeps as much as possible, and maxes out on his pain pills - 6 tablets a day - or even exceeds the max - up to 8 tablets a day. If he needs to go anywhere, someone has to drive him. He needs help simply walking down the hall to the bedroom or bathroom. He doesn't feel like eating dinner, let alone starting it, and the dishwasher is just out of the question. Life itself is a blur, something that exists beyond a fog of pain and medication.

He's only had a few "10" days since the surgery, and most of those were the days immediately following the surgery. The ones since then meant trips to the emergency room or to his doctor to be injected with something stronger.

What This Really Means To Us (Or, Lisa's Whining Paragraph)
As I said, I find often find myself reduced to saying, or just thinking, "You don't get it. You just don't get it." Although the people who find it most difficult to understand are usually acquaintances, or total strangers, I find myself frustrated with our families as well sometimes.

I mentioned that our closest relatives, my brother and his wife, my father and step-mother, various cousins, live 250 miles away. I've lost count of the number of times someone has said to me, "Gee, I'm starting to take it personally that Eddie doesn't come down with you. Are you sure he's not just avoiding us?" I just grit my teeth and explain - again! - what car trips do to him in general, and what short visits do to him in particular. Basically, for every day driving, he needs a full day to recover. If he comes with me to Indianapolis, and we leave on a Friday, he loses Saturday trying to recover from Friday. (If I leave on Saturday, which I usually do to avoid Chicago traffic, he has no time to recover because we have to come back home on Sunday.) Before he became disabled, I used to joke with him that my family liked him more than they liked me; now it just doesn't seem as funny.

Longer trips - those trips where we stay for more than a couple days - are still hard on him, but he has time to recover from the drive and still enjoy the visit. Now we only go to Akron, where one of his brothers and sisters still lives, if we can do a 5 day weekend. We've gone to South Carolina twice (where my mom and another of his sisters live), for a week each, and Florida (where the rest of his family is) once, also for a week. We returned from Florida the first of December, and to blunt, Eddie still hasn't recovered. Even these long trips, though, are limited to once a year usually. (This year, we went to both Ohio, in May, and Florida.)

But oh, am I tempted at times to tell the Indianapolis relatives, "Yep, you're right! Eddie's really fine, he just can't stand any of you! When I left him, he was re-roofing the house, shouting to the heavens, 'Lucky me! I just avoided a visit with my in-laws!'" If I thought that a few of them wouldn't take it seriously, I'd do it.

And while I realize that a way to avoid the hassle would be to spend a week in Indianapolis, I have two reasons for not doing so. The first is that since we generally only take 1 long trip a year, I'd just as soon go see either my Mom or Eddie's family (and I hate making an either-or-choice like that!). The second, as odd as it sounds, is the knowledge that the relatives in Indy simply aren't prepared to host us for a week at a crack. We live so close, the idea of vacationing there is almost ludicrous. I can't imagine asking them to take a week off to visit with us, nor can I imagine them actually doing that. Which, I suppose, says volumes about my relationship with at least a few of those relatives!

The other obvious alternative, under these circumstances, would be for them to come up and see me, right? Except my father doesn't like to visit people, and my brother and sister-in-law are allergic to my cats.

Well-Meaning Advice and Other Irritants (or, Lisa Complains Some More
It's human nature, when one hears of someone who has a health problem like Eddie does, to offer advice. I'm guilty of it too; I'm pretty certain I recently gave one of my aunts a lot of unsolicited advice about her gall-bladder removal, despite the fact that my gall-bladder is still nestled snugly against my liver. It reduces our sense of helplessness when confronted with something we can't fix. It's a universal trait. And, when the 3,923rd person offers the same advice, it's incredibly irritating.

I've considered having a card made up that states the following: Yes, we've gone for second and third opinions. No, no one can find a cause, let alone a cure. Yes, there are still medical options to consider, but we have to do them one at a time. Yes, we've considered acupuncture/acupressure/massage therapy/hanging like a bat from the ceiling/voo-doo/and (put your own pet theory here). Yes, we know that Eddie is taking fairly powerful drugs for his pain. No, we're not particularly worried about addiction; the day he decides to sit down and have a party with his meds, we'll consider the possibility. No, we don't think it's necessary to schedule him into the Betty Ford Clinic yesterday. Yes, his doctors know what meds he's on, especially the one doctor who prescribes and tracks the meds. No, we do not believe that legally prescribed and monitored pain meds are the root of the US Drug Problem. Finally, and most importantly, we do not believe that it is better to be dead than on pain meds. We just find something inherently wrong with that belief.

Where We Go From Here
Eddie is currently going through a screening process in order to have a spinal cord stimulator implanted. This SCS consist of a couple of electronic leads which are connected to a power supply. When the power is turned on, an electric current will disrupt the pain signals being transmitted to the brain. The theory is that the pain will be replaced with a "tingling" sensation.

His pain doc says he's had an 85-90% success rate, meaning that 85-90% of his patients who have had the SCS implanted have experienced a decrease in their pain ranging from 50% to 80%. (The manufacturer, Medtronics, publishes a 50% success rate; when questioned, the pain doc says that he uses a more strict screening process and doesn't implant as many patients as another doctor might.)

Eddie will probably have this done in January. It's a two-step process; first the leads are implanted, and connected to an external power supply. He'll have the external power supply for a trial period of 7-14 days. If he experiences a significant decrease in his pain, then he'll have a permanent power supply implanted in his abdomen. According to the pain doc, Eddie can expect the internal power supply to last between 2-4 years, depending on how often he has to run it.

If the SCS is a success, Eddie should be able to work at a desk job for 6-8 hours a day, as well as resuming other normal activities. I'll be honest; we've curtailed our lives so much, neither of us can really contemplate what "normal" activities may be. Stay tuned, though, as we find out!

©1997 Lisa Stalnaker Hellwig

Chronic Pain: Stories and Opinions and Other Resources

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