Just a spouse....
Please excuse me if I use this space for a little therapy since I can't afford (and don't have time) for an actual therapist or support group other than my blog. *sigh*
Dear Doctor __________,
My husband and I have been on a long journey since he was injured in May of '08. What everyone thought was a 'simple' hernia has turned out to be everything BUT that. It has included a missed diagnosis, incorrect treatment and a litany of doctors, clinics and medical professionals. So we're used to this system by now. Meeting you yesterday was merely a blip in a long process that so far, isn't even close to over yet. I know that. My husband knows that. You even said you knew that as well.
That said, this bears saying even if it's only here in my little blog or somewhere on the internet. I am my husband's wife. As you referred to me yesterday, I am "just his spouse."
Do you know what that means? Just his spouse? I am his best friend. His comforter when he's sick. His care giver when he is unable to function. I live with him 24/7. I married him "in sickness and in health. In good times and bad." Let me assure you that visits to the military health facility fall firmly into those categories. Despite what you may think, the 'just a spouse' thing doesn't bother me. I am proud to be just his spouse.
So as his spouse, let me say that ignoring me or lifting your hand into my face and saying "You aren't the patient, your questions do not matter" is not only absolutely inappropriate, it's just not true. When I ask a question, it's a concern that both he and I share. You may not realize that he asks me to come to these appointments because sometimes I remember things that he doesn't. Often, I can answer questions or fill in the gaps that he can't. So my questions do matter.
You are (at most) 20-30 minutes of our lives about once every three months. Being military, it's highly possible that you may only be that 20-30 minutes this one time. We've learned through experience that when our next appointment rolls around, you could be in Germany, Iraq, Afghanistan or even *gasp* Montana. We might never see you again in the course of my husband's career. But the decisions made in that 20-30 minutes will affect (at the very least) the next two to three months of our lives. We also know that your decisions could have much longer impact on our lives than just that time. We've found that out the hard way too. You aren't our first doctor and you won't be our last.
It would be good if you read his chart and familiarized yourself with the nature of his injury and what our previous treatments have been before you come into the room. Getting 20 minutes into our appointment and having you very suddenly realize that his injury is not at all what you thought it was and that you have no clue even where he hurts isn't acceptable. This is especially true when you're going to suggest (warning for those who might be easily offended) that 'removing his testicles would be an aggressive but acceptable treatment option.' It's really much better if a) it's not your first time meeting someone that you suggest this course of action and b) that you read the chart so you know what you're talking about before you would make this recommendation. Particularly since that's not a treatment that would work in his case. Removal of testicles? Not a good way to get us comfortable with your suggestions for his continuing care.
Oh and those previous medicines that we've already tried? The ones that you insist will work 'this time' because you're the one writing the prescription? I don't see how having your name on the prescription slip will change the reaction that my husband had to these medications. This isn't just that we refuse to work with your treatment options. What you need to understand is that those meds aren't merely ticky boxes to click 'yay or nay' on his chart.
You see that first one on the list? That's not 'just' neurontin. That's a 911 call from his coworkers because they found him laying in the hallway completely unresponsive. When he did finally come around after the ambulance showed up? He didn't know his name. Couldn't tell them where he was. And then he blacked out again. Later? When he woke up? His heart rate remained unsteady and he couldn't remember anything about what happened. He still doesn't. The doctors in the ER told him never to take that medicine again. So no, we're not jazzed about your insistence that 'we give it another go' because so many people DO respond well to it.
The second drug? The other one you'd like us to try again? That one was four weeks of me helping him to sit up, stand, walk, get dressed and driving him 45 minutes (one way) to work every day because he was too dizzy to focus on anything. I stayed at work with him every day because the military can't afford to have someone help him walk from office to office, make sure that he stays on task, carry his paperwork back and forth, etc. I did that because he wanted so badly to work and without my assistance, he was considered 'not of value to the military system.' The 'pushing through the initial phase' didn't work for us like it was promised that it would.
The third line on the chart? That was Easter Sunday. Right after the Hallelujah chorus was performed by our choir at church, security carried my husband to the car because he couldn't even sit in the pew anymore. He didn't know where he was. That was a whole day of explaining to my kids why Daddy couldn't help them hunt for eggs. He doesn't remember any of this. He knows what happened because I told him and because we celebrated Easter a week later than the rest of the world.
The fourth med? That was my husband lying unconscious in the front yard when we got home from the book fair at school. That was the night of our daughter's performance in The Music Man when I had to send a friend to the hospital with my husband so I could record my daughter's performance on camera for him to see. That was the night I ran back and forth (literally) between the emergency room and my car to keep checking on my kids because only one person was allowed in the ER with him at a time. There was no place for the kids at the hospital and I had to wait for a friend to come and get them. During that time, I'd run back into the hospital after each of his text messages to check on him and then run back to the car.
The fifth line on the chart? That's anger and wrath. That medication caused a shift in his entire being that wasn't pleasant and no, it wasn't an acceptable side effect to have him constantly screaming at the kids and I. Even if it meant that his pain was less (not gone - just less) it nearly destroyed everyone in our house in the process and caused more pain than it alleviated.
Is it necessary that we go through all 16 medications again to explain to you why trying them again just won't work? If you have the time, I'm more than willing to share our stories. As I explained yesterday, none of the reactions were as simple as falling asleep with his head on his desk or dry mouth. Those are simple trade offs and we'd be jumping for joy if we could find a medication that took care of his pain with one of those as the simple side effect.
I promise you this isn't just my insistence that we aren't going to try your way. I know you think that's the case because you told us as much. The thing is we've been on this journey for nearly two years already. We HAVE tried them and they were NOT good fits for my husband. Taking them at a different time of day isn't going to change those reactions. Going back to 'try those meds again because you're confident that they'll work this time' isn't an option for us. It's not (as you said yesterday) that I am trying to subvert his care and tell you what we can and can't do. Really. I promise you it's not. I'm trying to HELP you with his care.
My questions and concerns (and in the instance of the testicle removal and 're-trying' drugs that landed my hubby in the ER) are also NOT just my attempts to make my husband an opioid drug addict as you suggested yesterday. The opioids are, at this point, the only thing that have worked to help give him a decent chance at a normal life. I'm just asking that you not take them away simply because they're opioids. He's only been on them since August and at the barest minimum dose. We aren't asking for more or bigger doses. We just don't want you to remove them quite yet. It's been the closest thing to a normal life we've had since May '08. Trust me, we know that they are band-aids. Neither one of us wants him to be on opioids for the rest of his life. That's not an option to us.
This is why we've asked about accupuncture, massage, laser... Heck, we've actually tried injections into trigger points deep into his groin and nerve blocks with lots of needles into very sensitive areas...we've done that. If any of those had worked we'd happily do it again. I assure you we're not 'demanding only opioids.' Please - tell us what else we can do. If you have any suggestions beyond testicle removal and retrying the same meds we've tried before, we're open to them.
You see, I am my husband's spouse. I'm his wife. And the military does have one thing very right about that. I AM his dependent. Proudly so. My kids and I? We do need him. We depend on him every day. So trust me when I tell you, that his care is my top priority as well.
Your absolute insistence that you 'could fix this' where none of the 20 or so other doctors previously could (and by using methods we've already tried) didn't give us confidence in your care. Looking me in the eye and saying "You're the spouse here. Not the patient. Your concerns don't matter" didn't give me confidence in your abilities either. The upside of that? I had absolutely no confidence whatsoever in your statement that we "have no hope and no other options than what I'm telling you right now."
You see, we DO have hope. You may be his assigned physician here in this military treatment facility for right now, but you're not the physician we're turning to for his care. You're not his cure. You won't be. You're not going to fix him. We know that. We rely on a greater plan and a far more trustworthy physician than you or anyone you've ever worked with or gone to school with. This physician is one that we can rely upon no matter what the injury is - physical or spiritual. And He cares for my husband and me and our children. He knit my husband together in the womb and He has held my husband in His hand for every step of his life. He's never gone TDY or deployed to another location. He's never forgotten to make note of my husband's condition and he's never misdiagnosed what's wrong. He's never left us or forsaken us. We're not numbers to Him or appointments in His day. We know that and we are so thankful every moment for that fact.
Your insistence that you are my husband's only hope? Trust me when I say that you are the only one who believes that.
Dear Doctor __________,
My husband and I have been on a long journey since he was injured in May of '08. What everyone thought was a 'simple' hernia has turned out to be everything BUT that. It has included a missed diagnosis, incorrect treatment and a litany of doctors, clinics and medical professionals. So we're used to this system by now. Meeting you yesterday was merely a blip in a long process that so far, isn't even close to over yet. I know that. My husband knows that. You even said you knew that as well.
That said, this bears saying even if it's only here in my little blog or somewhere on the internet. I am my husband's wife. As you referred to me yesterday, I am "just his spouse."
Do you know what that means? Just his spouse? I am his best friend. His comforter when he's sick. His care giver when he is unable to function. I live with him 24/7. I married him "in sickness and in health. In good times and bad." Let me assure you that visits to the military health facility fall firmly into those categories. Despite what you may think, the 'just a spouse' thing doesn't bother me. I am proud to be just his spouse.
So as his spouse, let me say that ignoring me or lifting your hand into my face and saying "You aren't the patient, your questions do not matter" is not only absolutely inappropriate, it's just not true. When I ask a question, it's a concern that both he and I share. You may not realize that he asks me to come to these appointments because sometimes I remember things that he doesn't. Often, I can answer questions or fill in the gaps that he can't. So my questions do matter.
You are (at most) 20-30 minutes of our lives about once every three months. Being military, it's highly possible that you may only be that 20-30 minutes this one time. We've learned through experience that when our next appointment rolls around, you could be in Germany, Iraq, Afghanistan or even *gasp* Montana. We might never see you again in the course of my husband's career. But the decisions made in that 20-30 minutes will affect (at the very least) the next two to three months of our lives. We also know that your decisions could have much longer impact on our lives than just that time. We've found that out the hard way too. You aren't our first doctor and you won't be our last.
It would be good if you read his chart and familiarized yourself with the nature of his injury and what our previous treatments have been before you come into the room. Getting 20 minutes into our appointment and having you very suddenly realize that his injury is not at all what you thought it was and that you have no clue even where he hurts isn't acceptable. This is especially true when you're going to suggest (warning for those who might be easily offended) that 'removing his testicles would be an aggressive but acceptable treatment option.' It's really much better if a) it's not your first time meeting someone that you suggest this course of action and b) that you read the chart so you know what you're talking about before you would make this recommendation. Particularly since that's not a treatment that would work in his case. Removal of testicles? Not a good way to get us comfortable with your suggestions for his continuing care.
Oh and those previous medicines that we've already tried? The ones that you insist will work 'this time' because you're the one writing the prescription? I don't see how having your name on the prescription slip will change the reaction that my husband had to these medications. This isn't just that we refuse to work with your treatment options. What you need to understand is that those meds aren't merely ticky boxes to click 'yay or nay' on his chart.
You see that first one on the list? That's not 'just' neurontin. That's a 911 call from his coworkers because they found him laying in the hallway completely unresponsive. When he did finally come around after the ambulance showed up? He didn't know his name. Couldn't tell them where he was. And then he blacked out again. Later? When he woke up? His heart rate remained unsteady and he couldn't remember anything about what happened. He still doesn't. The doctors in the ER told him never to take that medicine again. So no, we're not jazzed about your insistence that 'we give it another go' because so many people DO respond well to it.
The second drug? The other one you'd like us to try again? That one was four weeks of me helping him to sit up, stand, walk, get dressed and driving him 45 minutes (one way) to work every day because he was too dizzy to focus on anything. I stayed at work with him every day because the military can't afford to have someone help him walk from office to office, make sure that he stays on task, carry his paperwork back and forth, etc. I did that because he wanted so badly to work and without my assistance, he was considered 'not of value to the military system.' The 'pushing through the initial phase' didn't work for us like it was promised that it would.
The third line on the chart? That was Easter Sunday. Right after the Hallelujah chorus was performed by our choir at church, security carried my husband to the car because he couldn't even sit in the pew anymore. He didn't know where he was. That was a whole day of explaining to my kids why Daddy couldn't help them hunt for eggs. He doesn't remember any of this. He knows what happened because I told him and because we celebrated Easter a week later than the rest of the world.
The fourth med? That was my husband lying unconscious in the front yard when we got home from the book fair at school. That was the night of our daughter's performance in The Music Man when I had to send a friend to the hospital with my husband so I could record my daughter's performance on camera for him to see. That was the night I ran back and forth (literally) between the emergency room and my car to keep checking on my kids because only one person was allowed in the ER with him at a time. There was no place for the kids at the hospital and I had to wait for a friend to come and get them. During that time, I'd run back into the hospital after each of his text messages to check on him and then run back to the car.
The fifth line on the chart? That's anger and wrath. That medication caused a shift in his entire being that wasn't pleasant and no, it wasn't an acceptable side effect to have him constantly screaming at the kids and I. Even if it meant that his pain was less (not gone - just less) it nearly destroyed everyone in our house in the process and caused more pain than it alleviated.
Is it necessary that we go through all 16 medications again to explain to you why trying them again just won't work? If you have the time, I'm more than willing to share our stories. As I explained yesterday, none of the reactions were as simple as falling asleep with his head on his desk or dry mouth. Those are simple trade offs and we'd be jumping for joy if we could find a medication that took care of his pain with one of those as the simple side effect.
I promise you this isn't just my insistence that we aren't going to try your way. I know you think that's the case because you told us as much. The thing is we've been on this journey for nearly two years already. We HAVE tried them and they were NOT good fits for my husband. Taking them at a different time of day isn't going to change those reactions. Going back to 'try those meds again because you're confident that they'll work this time' isn't an option for us. It's not (as you said yesterday) that I am trying to subvert his care and tell you what we can and can't do. Really. I promise you it's not. I'm trying to HELP you with his care.
My questions and concerns (and in the instance of the testicle removal and 're-trying' drugs that landed my hubby in the ER) are also NOT just my attempts to make my husband an opioid drug addict as you suggested yesterday. The opioids are, at this point, the only thing that have worked to help give him a decent chance at a normal life. I'm just asking that you not take them away simply because they're opioids. He's only been on them since August and at the barest minimum dose. We aren't asking for more or bigger doses. We just don't want you to remove them quite yet. It's been the closest thing to a normal life we've had since May '08. Trust me, we know that they are band-aids. Neither one of us wants him to be on opioids for the rest of his life. That's not an option to us.
This is why we've asked about accupuncture, massage, laser... Heck, we've actually tried injections into trigger points deep into his groin and nerve blocks with lots of needles into very sensitive areas...we've done that. If any of those had worked we'd happily do it again. I assure you we're not 'demanding only opioids.' Please - tell us what else we can do. If you have any suggestions beyond testicle removal and retrying the same meds we've tried before, we're open to them.
You see, I am my husband's spouse. I'm his wife. And the military does have one thing very right about that. I AM his dependent. Proudly so. My kids and I? We do need him. We depend on him every day. So trust me when I tell you, that his care is my top priority as well.
Your absolute insistence that you 'could fix this' where none of the 20 or so other doctors previously could (and by using methods we've already tried) didn't give us confidence in your care. Looking me in the eye and saying "You're the spouse here. Not the patient. Your concerns don't matter" didn't give me confidence in your abilities either. The upside of that? I had absolutely no confidence whatsoever in your statement that we "have no hope and no other options than what I'm telling you right now."
You see, we DO have hope. You may be his assigned physician here in this military treatment facility for right now, but you're not the physician we're turning to for his care. You're not his cure. You won't be. You're not going to fix him. We know that. We rely on a greater plan and a far more trustworthy physician than you or anyone you've ever worked with or gone to school with. This physician is one that we can rely upon no matter what the injury is - physical or spiritual. And He cares for my husband and me and our children. He knit my husband together in the womb and He has held my husband in His hand for every step of his life. He's never gone TDY or deployed to another location. He's never forgotten to make note of my husband's condition and he's never misdiagnosed what's wrong. He's never left us or forsaken us. We're not numbers to Him or appointments in His day. We know that and we are so thankful every moment for that fact.
Your insistence that you are my husband's only hope? Trust me when I say that you are the only one who believes that.