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Post by Ximena on May 19, 2016 7:42:05 GMT -5
I don't really post here anymore and most of you probably either don't know me because you're new or don't remember me, but one of my blog posts was recently published on The Mighty website, a site devoted to illness and disability. I wrote about my chronic pain and how it's affecting my sleep and how frustrating that is if anyone wants to read it: themighty.com/2016/05/painsomnia-cant-sleep-because-of-chronic-pain/
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Post by lucretia on May 19, 2016 8:30:15 GMT -5
I don't really post here anymore and most of you probably either don't know me because you're new or don't remember me, but one of my blog posts was recently published on The Mighty website, a site devoted to illness and disability. I wrote about my chronic pain and how it's affecting my sleep and how frustrating that is if anyone wants to read it: themighty.com/2016/05/painsomnia-cant-sleep-because-of-chronic-pain/As my grandfather used to say, "Well, Hell..." I have chronic pain and I hear you. Losing the escape sleep brings is.... you know. I'm currently in a wonderful pain management program that... usually helps. We're in the middle of some tweaking as spinal injections aren't working as well as they did last year. I'll check out your blog. Oh!! Congratulations on being picked up by The Mighty!! They're a loud voice in the disability community.
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Post by Deleted on May 19, 2016 12:01:51 GMT -5
I am sorry you are going through such a rough time right now Chie. May I ask what kind of pain you are experiencing and where the pain stems from?
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Post by Ximena on May 20, 2016 8:18:42 GMT -5
I am sorry you are going through such a rough time right now Chie. May I ask what kind of pain you are experiencing and where the pain stems from? I have a chronic stomach disease I've dealt with for years and it's mostly managed. Right now my pain is from a headache that started in Jan of 2015 and has never gone away. It's basically having a bad migraine every single day, all day, for months.
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Post by Deleted on May 20, 2016 18:34:33 GMT -5
I am sorry you are going through such a rough time right now Chie. May I ask what kind of pain you are experiencing and where the pain stems from? I have a chronic stomach disease I've dealt with for years and it's mostly managed. Right now my pain is from a headache that started in Jan of 2015 and has never gone away. It's basically having a bad migraine every single day, all day, for months. That sounds horrible, have you gotten MRI's and things for your head?
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Post by Ximena on May 20, 2016 21:08:38 GMT -5
Yes. What I have is called New Persistent Daily Headache (NPDH) and it's notoriously hard to treat. I actually just saw my neurologist today and had the most horrible frustrating exeperience with a doctor I've ever had, and I've had my share.
He completely dismissed and ignored how severe my pain is (especially lately) and refused to give me anything to help me sleep, even for only a week until I can see the pain management doctor. He even mocked me. It was horrible to be in excruciating pain, to have had your life destroyed by it, and to go to someone who is supposed to help you and for them to basically tell you you're exaggerating and leave him alone.
I've blogged about my headache several times on my site if you really want to know more about it. I'm sure I'll continue to do so and submit articles to The Mighty.
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Post by lucretia on May 20, 2016 21:16:34 GMT -5
I hope you report him!! It's a new day for doctor/patient relations. But so many docs haven't gotten the memo.
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Post by Ximena on May 22, 2016 22:11:01 GMT -5
I hope you report him!! It's a new day for doctor/patient relations. But so many docs haven't gotten the memo. Unfortunately, there's really no one to report him to. And for what? Yeah, he's a total jerk but that isn't exactly malpractice. I just have to hold out and hope the pain doc and the new neuro can help me.
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Post by Inigo Montoya on May 23, 2016 7:55:49 GMT -5
I hope you report him!! It's a new day for doctor/patient relations. But so many docs haven't gotten the memo. Unfortunately, there's really no one to report him to. And for what? Yeah, he's a total jerk but that isn't exactly malpractice. I just have to hold out and hope the pain doc and the new neuro can help me. I agree with lucretia. Report him to the hospital he works for. Or the doctor's group. It might not be malpractice now... But if he behaves that way with another patient and they don't share a symptom for fear of being mocked and then die. THAT'D be malpractice, right? For that matter, there's no guarantee that his behavior and practical refusal to treat won't more negatively affect you farther down the road. (Ignoring the fact that he's literally denying you sleep.) I'd think that the whole "do no harm" oath would imply that people shouldn't leave your office feeling worse than when they went in unless you're delivering a terrible diagnosis. Hang in there.
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Post by lucretia on May 23, 2016 10:25:07 GMT -5
It may actually be malpractice. Women die every day because their systems are downplayed. So being dismissive to you and making you feel less likely to return to him is actually grounds for a suit.
In any case, there is always someone to report him to. It might be difficult to determine who, but no doctor or specialist in the world practices without someone giving them that privilege.
And it IS a privilege. Someone needs to remind them sometimes.
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Post by Inigo Montoya on May 23, 2016 11:34:34 GMT -5
I want to say that neither Lu or I want to add pressure or stress. But I think we're both coming from a place of wanting you to feel a little more empowered with your health care. My mom has chronic pain, and has since I was a teen, and it's only in the last few years that she's even gotten treatment due to bullshit like what he did to you.
I know that it is already so incredibly difficult for you to reach out for help and, well, fuck him for not doing his job.
If you would like to do it, either of us are willing to help. You are a very articulate person, but it can be challenging to speak up for one's self do we're here to help if you want. Regardless of what you choose to do.
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Post by Ximena on May 24, 2016 7:59:33 GMT -5
I appreciate your help, ladies, but the sad fact is unless you have grounds for a lawsuit (and the money to bring one) there really isn't much you can do in cases like these. Especially when the prejudice against women is so endemic. Yes, I'm sure I could file a complaint with the medical board, but as there is technically nothing he did that caused me documented harm (yes HE DID cause me harm but it's not something you can quantify), there's really not much that will be done about it. It's the reason we continue to have so many jerk doctors practicing out in the world.
It would be my word against my medical history/the charts--which I know are inaccurate (because who makes the records? the jerk who doesn't listen to me)--and his. I'm just a "troublesome/difficult patient."
Honestly, probably the best thing I can do is warn other people with this type of headache on our forums not to go to him even if he is supposedly a specialist in headaches as he clearly doesn't know how to treat us, both in the literal sense of medicine and as people.
The other issue is it's likely that if I did initiate any complaint against him it would probably hurt me more than it would him. Especially since as reluctant as I am, for fiancial reasons I may have to go back to him for one of my specialized treatments. Even if I do find a way to pay for it with the other headache specialist, it still could cause me more harm than him. Because the reality is the way the complaint process works, I don't have much grounds regardless of how much harm he actually caused me.
I DO think I will be reporting the doctor who falsely diagnosed me with cancer (I went to the specialist at MD Anderson and was told that diagnosis was not only wrong but totaally insane), because I do have grounds there.
The sad thing is this type of situation happens all the time and there really isn't much we can do about it.
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Post by mike on May 24, 2016 9:20:05 GMT -5
Ximena, there are a couple of points I would like to make:
1. I'm sorry you're going through this, and know it's been a long time for you.
2. Everyone has good & bad days, we just don't expect others to have them. When professionals have a bad day we are affected, usually not in a good way. We generally expect professionals to be professional & not bring their personal problems into our life, but sometimes they can't or simply won't separate their problems from ours. We need to keep in mind however that doctors are human too, he may have been under a lot of stress for things unrelated to you. In all likelihood he isn't aware of the other things that are bothering you, therefore he's simply looking at one aspect & thinking you're being unreasonable. You're not. Just because he doesn't understand doesn't make you wrong.
3. Probably the most effective way of dealing with this would be to write the doctor & tell him what is bothering you and the impact his behavior has had on you. You are a wonderful writer, so that part shouldn't be difficult for you. Even if he doesn't respond, it just might help his next patient. Two questions you might ask him are: Would it really be that difficult for him to show a little compassion? Just exactly how does he think insulting you is going to help?
4. In my opinion, doctors ideally help us in several ways: the most obvious is with medical science, but another important component is emotionally. If your doc simply validated what you're going through it would probably help a lot. If your doc actually was compassionate towards you, that would probably help even more. In my experience, female doctors are much better at this part, and the primary reason I greatly prefer them.
5. In a perfect world, we could simply walk out & go somewhere else. Unfortunately the world isn't perfect yet, so we have to deal with practical realities like insurance and out-of-pocket expenses, which just adds to the frustration you must be feeling.
6. With some conditions like chronic pain, emotional stress amplifies the pain, which in turn amplifies the stress etc. etc. It's probably like telling you to jump 10 feet into the air, but anything you can do to reduce your stress level will probably also reduce your pain.
7. Hopefully, knowing we're concerned about you will send a small sliver of light into your dark times, and will help you, even if only a tiny bit.
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Post by Ximena on May 24, 2016 11:09:23 GMT -5
Thanks, mike. (And everyone else.) I really do appreciate it. As I'm sure you know, chronic pain itself can be isolating and frustrating and having bad experiences like this doesn't help. Honestly, I don't feel like this doctor ever really listened to me. Maybe he was having a bad day, and that just made things more egregious, but the long and short of it is I need someone who will be supportive and aggressive and actually pay attention to what I'm dealing with day in and day out. He's also the one who referred me to the hematologist who unnecessarily and wrongly diagnosed me with cancer, putting me through a lot of extra stress and pain. My hope is that the cost for my botox (and other treatments) with this other neuro won't be so outrageous as to prohibit me from never ever seeing the doctor who betrayed me ever again, as I have been treated badly before by many doctors, but this took the cake by far.
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