"If we lose our hope, that's our real disaster.” ~ The Dalai Lama

The more I think about it, the more my recent hospital stay bothers me:  in the ER, all they wanted to do was give me pain medications an...

The more I think about it, the more my recent hospital stay bothers me:  in the ER, all they wanted to do was give me pain medications and send me on my way.  But more on that later.
 
After triage, they sent me to the ER bays where my first point-of-contact was a nice nurse who took my vitals and got me the world's crappiest ice pack (but points to her for asking if there was anything she could do to alleviate the pain).  After that, it was a physician's assistant who told me that she wanted to do a steroid injection as well as some Percocet.  I told her that at my most recent appointment with my doctor, he said he didn't want me on steroids (such as the epidurals that I've had in the past for both my neck and my lower back) and that I would like an ortho consult.  She gives me Percocet (even after I told her that Percocet/Vicodin don't help me) and then brings in the ER attending doctor who sasses me for questioning the care(?) that I'm getting.  He's the doctor, and I must defer to his all-knowing wisdom.  Nothing makes me angrier than this arrogance.  So, I sassed him right back and asked him when he did his ortho residency.  I think that shamed him enough into flipping through the file that I brought with my most recent MRIs and radiology reports.  

The ER attending told me that taking an MRI or x-ray for a known condition (my back issues) wouldn't change their assessment or their care.  So long as my legs weren't numb (a spectrum from nerve compression to paralysis), their plan wasn't going to change -- they wanted to give me pain medications and send me home.  I could have herniated three discs and had disc bits floating around in my epidural space pressing against my spinal cord and they wouldn't have cared.  It didn't matter to them that I've had a history of managing the injury and the pain and that for me to even come into a hospital meant something had escalated.
He leaves and I take that time to call the orthopedic resident on-call (yay internets on phones!).  He comes down within 20 minutes (Dr. Dan is very cute! (but don't tell him that!)) and the first thing the resident tells me is that he texted his boss:  my doctor.  My doctor wants me to get an MRI and to admit me to address the pain.  Finally, someone was listening to me.  I apologize to the nurse and the PA for being such a persistent pain in the ass.
I get my MRI and then was taken to the orthopedic floor of the hospital.  The ortho nurse listened to me when I told her that I was a needphobe, and she gave me an anti-anxiety med along with the Dilaudid.  Sadly, the Dilaudid and I didn't get along, I vomited, and we learned no Dilaudid without an anti-nausea medicine.  And I think I also got more Percocet.  There were a few miscommunications along the way: no one told me that they were planning to keep me overnight until it was 8pm; a nurse told me that I could order dinner up until 9pm but food service stopped at 6:30 (yay! narcotics on an empty stomach!); notes not making it into my life and/or people saying they were going to set up appointments for me and that never happened.  I think I went through 20 of those crappy ice packs.  Maybe more.

Even though I had been given a morphine derivative, I was still awake for most of the night.  Sometime around 6 the next morning, Dr. Dan stops by before he's set to spend the day in the operating room with Dr. O'Brien -- the radiology report is back!  I didn't herniate the disc, but (based on my reading of my radiology reports) my discs and/or vertebrae have shifted.  Dr. Dan tells me that I'm not a surgical candidate at this time (the plan is for another disc replacement, not a multi-level fusion).  I don't want to be sliced and diced, but this is still hard news to take.  He's saying that it's all about pain management until I am a candidate (whenever that is).  Joy.

So the discharge nurse and I have a chat about pain management.  What works for me?  Well.... ice.  If you know me, you know I love my ice pack (which makes having a broken fridge that more awesome).  I try to lay off the pain meds (they do nothing for me in the prescribed doses and I don't want to increase the dosage and become a zombie), however I've found NSAIDs and muscle relaxers to help. Trying to find a comfortable way to sleep is one of the hardest parts of my back pain and NSAIDs/muscle relaxers make that possible.  Sleep is where most of the healing/repair takes place.

So what do I get sent home with?  
-- 2 prescriptions to help counteract the effects of narcotics on my gastrointestinal tract
-- 7 Meloxicam (NSAID) pills (1/day)
-- 10 Flexeril (muscle relaxer) (2/day)
-- 40 Percocet (narcotic pain pill) (1 every 6 hours)

"The good physician treats the disease; the great physician treats the patient who has the disease."

William Osler

It saddens me that "pain management" is this catch phrase that translates into numbing someone to the pain they're feeling instead of helping them alleviate it (as well as translating into a very lucrative medical field).  A patch job versus repair.  I wish there was a way to condense the last 16 years into a way of showing doctors that I'm fighting for myself with all I've got, but that for right now I need their help and compassion.  So much of managing chronic pain is just finding treatment from a doctor who doesn't assume that you're weak.  So much of managing chronic pain is reminding the patient that they are being heard and the doctor is on the patient's side. 

(And the thing that I'm afraid to say, because I don't know how it'll be received:)  So much of managing chronic pain is reinforcing the narrative of hope -- that one day the patient will have less or no pain.  Ask anyone who has had chronic pain before, and that very statement can send them to a very dark place.  Chronic pain without hope can send people into alcoholism, addiction to pain killers, and even to suicide. 

I'm not there.  I've not lost hope -- but as I get older and feel less like I own my on body or my own future, I wonder about these things.  How much hope should I have about falling in love when I'm worried about just regular falling?  How much hope should I have about being a mom when I'm not allowed to carry anything over 5 lbs?  How much hope should I have about anything when it takes all my focus and determination to just put on underwear?  I'm not trying to be hyperbolic or melodramatic.  The people who have had chronic illnesses/diseases or who have a disability that affects them every day of their life know where I'm coming from. 
Life's not always rose colored glasses.
Sometimes the asshole doctor in the ER gets his wishes and you get sent home feeling as bad as you did when you came in.

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6 comments

  1. I know the depression of years of chronic pain and I feel for you. I'm lucky, 14 years later and I am very close to healed as long as I don't overdo things badly. But those years of pain all the time, unable to dress myself without help, not knowing if I would ever get better or be able to work again (I can work now, part time), it is a very dark place to be. I was newly married and had a very supportive husband which of course was wonderful but also came with a lot of guilt that I wasn't the person he had married.

    And when the doctors talk about "pain management"! I so agree with you. What you hear is "you are going to be in a lot of pain for the rest of your life, so learn to deal with it".

    I so hope things get better for you. Maybe surgery eventually, if you do become a candidate whatever that means in this case. Whatever it takes. I think you are right to avoid drugs if you can, but do whatever helps.

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  2. Natalie: I can't begin to tell you how much it means to know that other people understand chronic pain. I don't want anyone else to suffer like this, but it's still a comfort to know I don't have to explain it to anyone.

    I don't want to have surgery any time soon, but now that I've been through it, I'm not as scared to investigate it.

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  3. You've also identified a larger problem with our healthcare system - doctors are too fixated on numbers and moving as many patients through as possible. They've gotten to a point where they would rather give pills and send people on their way because they think that is what most patients want (and patient satisfaction scores back that up - patients score experiences higher when they get medication vs. when they are told the solution may be more complicated than pill popping). Our ERs are not set up for treating patients with existing conditions as for so long they've had to care for people who've had little or no regular preventative care. It's going to take a long time before they're prepared to expect and work with people like you who are informed about their options, have a clear understanding of what works for them and what doesn't, and who are rightly able to advocate for themselves. It sounds like, and I hope, you have a good relationship with your orthopedist or primary care doctor so you can get the help you need when it's not an emergency situation.

    The other thing I want to say is that I'm just so proud of you for sticking up for yourself and not letting the docs push you around. You're always going to be the expert on your own body, even if it feels like the pain is the one in charge of your life, no matter how many years of training any physician has. Your voice is the one that needs to be heard the loudest and I love that you put that guy in his place. You're calling doctors in for their opinions but you're still the one who calls the shots.

    As far as your outlook on the future, don't be afraid to admit it's hard to hope. It's also okay to admit that you're just exhausted from fighting the same battle for so long. Your feelings are completely justified so be gentle with yourself and let the emotions do what they will (within reason, of course, but I trust you know where the boundaries are). I think just letting all this out in a blog post can be really helpful in processing thoughts and feelings so I hope this post did just that.

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  4. I hope you feel better, i know what it is like to not feel like you own your own body, as we age things change and we just have to accept it, which in reality sucks, we cant understand why it does this,as it is ours.. But we have to learn to live with that, i guess thats why old people are snappy lol .. I really hope you feel better soon! Im not the best of writing uplifting words, but i tried.

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  5. Kate:

    Thank you so much for this sweet comment. I felt like such a heinous bitch in the moment, but you're exactly right: I was advocating for my own care. I should NEVER have to apologize to anyone for that (especially because I never raised my voice and was always polite).

    I have a great relationship with my Orthopedist -- it just happened to be that this happened on a Sunday morning -- otherwise I know I could have gone straight to him. I don't know what kind of care I would have been given if I hadn't (1) called the on-call resident and (2) emailed my doctor telling him what was going on. Having a doctor on my side changed how the ER treated me (more like a human, less like a number).

    I agree 100% that people know their bodies. Doctors can apply their training or experience, but in the end, it's up to the patient to say what care will/won't work for them. My doctor involves me as a participant in my care.

    Being able to admit that I am scared about my long-term prognosis was hard. I don't want people to think I'm throwing in the towel. I don't want people to be worried about whether I'd give up and/or commit suicide over something like this. But it felt good to cast aside the super hero alter ego for a second and admit feeling very human, very vulnerable/fragile, and unsure of what's to come.

    Again Kate, thanks for the very kind words :)

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  6. @Raven: I'm going to translate what you just said in a way that makes sense to me -- that even if my body is crapping out on me, it's still my body and I have to find a way to work with it and not against it.

    And that.... well... that's the heart of the matter, eh?

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<3 Robby