This morning when I got on Facebook, it reminded me of my memories from this date over the years. I do love this about Facebook and often, it brings to mind those daily treasures that too often are forgotten. On this date in 2010 though, there was a pretty powerful memory that I felt needed to be shared. again. Especially in light of our current situation. Rather than hit the share button on Facebook, I decided to put it here on my blog.
So I beg your indulgence as I share a memory from November 19, 2010.
Please excuse 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 own blog and Facebook. *sigh*
Dear Doctor ________,
My husband and I have been on a journey since he was injured in May of 2009. 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 is only here on my little blog or somewhere on the internet. I am my husband’s wife or, 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 is sick. His caregiver when he is unable to function. I live with him 24/7. I married him ‘in sickness and health and 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 in my face and saying “You aren’t the patient, your questions don’t matter here” 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 when he can’t. So my questions do matter.
You are, at most, 20-30 minutes of our lives just once every 2-3 months. Being military, it’s highly possible that you may only be that 20-30 minutes just this one time. We’ve learned through experience that when our next appointment rolls around, you could be in Germany, Iraq, Afghanistan or even Montana. We might never see you again in the course of my husband’s career. But the decisions made in that short appointment will affect (at the very least) the next several months of our lives. We also know that your decisions could have much longer impact on our lives than just that one time. We’ve found that out the hard way too. You aren’t our first doctor and you will not be our last.
It would be good if you could read his chart and familiarize yourself with the nature of his injury (as well as what our previous treatments have been) before you come into the room. Getting 20 minutes into the 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 really 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 would know what you’re talking about before you would make this recommendation. Particularly since that is not a treatment that would actually help his problem. Removal of testicles? Really? Not a good way to get us comfortable with your suggestions for his continuing care.
Oh and those previous medicines that we have already tried? The ones you insist will work ‘this time’ because YOU are 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 suggested treatment options. What you need to understand is that those medications are not just merely ticky boxes to click ‘yay or nay’ on his chart.
You see that first one that’s listed?The top go-to drug for pain management? It’s not just a line on his chart. That is a 9-1-1 call from his coworkers because they found him lying 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. Even later when he woke up again, his heartbeat remained unsteady for hours and he couldn’t remember anything that happened after going to bed the night before. 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.
That second drug – the one you’d like for us to try again because the way you prescribe it is different – that was four weeks of me having to help him stand, sit, get dressed and walk. It also meant me driving him to work every day and staying with him because the military couldn’t afford to have someone help him walk from office to office, make sure he stayed on task, carry 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 when we agreed to try it. I just can’t see how a second go round would work.
The third drug you recommended we try again is, once again, more than just a name on a chart. That’s Easter Sunday. Right after the Hallelujah chorus was performed by our choir at church, security came and carried my husband to the car because he was so dizzy he couldn’t even sit up straight in the pew. The world was spinning and turning black and white – he could not focus on anything. Opening his eyes made him physically ill. That was a whole day of explaining to my kids why Daddy couldn’t help them hunt for eggs this year. He still doesn’t remember any of this. He knows what happened because I told him and because we celebrated Easter a week after the rest of the world.
The fourth medication on your list 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. I had to send a friend to the hospital with hubby so I could record her moments on stage for him to see. That was the night I ran back and forth (literally) between the ER and the parking lot after her performance to check on my kids because only one person was allowed in the ER at the 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 into the hospital to check on him then, run back to the car to be with the kids. It only lasted about 30 minutes or so, but it was hell during that time.
Is it necessary that we do this with all of the 16 medications again to explain why trying them again just won’t work? If you have the time, I’m more than willing to share my stories. As I explained in our appointment yesterday, none of the reactions were as simple as falling asleep with his head on his desk or dry mouth. Those are such small trade offs we would be jumping for joy if we could find a medication that took care of his pain with one of those as the worst side effect.
The names of medications are more than just lines on a chart. They are my life summed up in nice neat little packages that show none of the reality. Just a note that says ‘They didn’t like this one.’
I promise this is not just my insistence that we just refuse to do it 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 a lot longer than you have been. We HAVE tried those things and they were not good fits for my husband’s situation. Taking them at a different time of day won’t change the reactions that he had. Going back to ‘try again’ because you’re confident that they will work this time is just not an option for us. It is not, as you said to me yesterday, that I am trying to subvert his healthcare and tell you what we can and cannot do. Really. I’m not. I’m trying to HELP you with his care.
My questions and concerns are NOT just my attempts to make my husband an opioid drug addict as you told me yesterday. The opioids are, at this point, the only thing that have worked to give him some semblance of a normal life. I’m just asking that you not take them away simply because they are opioids and the press about them is bad. He’s 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 normal we have had since May of 2009. Trust me, we know that they are band-aids. Neither of us wants him to be on opioids for the rest of his life. That is not an option for either of us.
This is why we have asked about accupuncture, massage, laser…heck, we’ve even tried deep injections into trigger points in the center of his groin and nerve blocks administered directly into the most sensitive areas of his body. If any of those had worked, we’d happily do it again. I assure you, we are not ‘demanding only opioid treatment’ as you accused us yesterday. Please, tell us something we can use. Something that does not involve removing his testicles or re-trying medication that has hospitalized him previously. We’re open to other ideas – please?
You were right about one thing. I am my husband’s spouse. I am his wife. And the military does have one thing very right about that. I AM his dependent. Proudly so. My kids and I DO need him. We depend on him every single day. So trust me when I tell you that his care is also my top priority.
Your absolute insistence that you can fix this when none of the 20 or so other doctors we have seen has been able to (and using methods we’ve already tried) didn’t really give us confidence in your care. Looking me in the eye and stating “You’re the spouse here. Not the patient. Your concerns don’t matter.” didn’t give me much confidence in your abilities either. The upside of that? I had absolutely no confidence whatsoever in your statement that we ‘have no other option and no options other 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, but you’re not the physician that we are turning to for his care. You are 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. He even covers physical, emotional and spiritual needs. 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 when we needed him. 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 are not numbers on a chart or lines in a report for His day. We know that and we are thankful every moment for that fact.
Your absolute insistence that you are my husband’s only hope? You’re the only one who actually believes that.
Just a spouse.
*2016 note. We have seen this doctor many times throughout our journey. He’s never brought up this disastrous first meeting and he’s studiously avoided a lot of conversation with me. He is NOT still my husband’s doctor though. Hubby’s current doctor is AMAZING and has cared for and connected with our entire family. We are, and will be eternally grateful for the care he’s given throughout this trial. We’re hopeful and confident that his pain situation is coming to an end.
I continue to pray daily for all of those caregivers who are still in the trenches and dealing with anything along these lines. Your life isn’t easy. It’s really hard. But know that you can do this and you aren’t alone. There are a lot of us out there and a lot of places that can help. Get connected. Ask for help when you need it, and get a patient advocate if necessary. For whatever it’s worth, I’m praying for you and I’m here for you as well.