This WebMD Assessment thing just came up on my FB and it was like: Fill this out and enter to win this prize, and I was curious so I was like…what they hay? I’m sitting here on the john anyway (TMI?). I’ve got nothing better to do. So I fill out their survey, and there’s a lot of things on there that I wished there were more responses possible responses for. I suppose I recognize that they can’t cover everything, but I’m going to go through it again while I’m sitting here writing my little blog and walk you through my thoughts so I can illustrate a point that I’m going to get to…after a while. I hope you’ll read through this. It’s going to be long maybe.
The first few questions are pretty straightforward.
Then we get to this series of questions where you rate on a scale of 1-6, one being strongly disagree and 6 being strongly agree…
“I rely on my doctor to recommend treatment instead of researching my own” – I don’t think this question belongs on a scale. When I see my doctor I’ve done my homework, she clearly has done hers, and then we have a conversation about what might be the right next step for ME based on MY life. I like to stay up on the latest research and I know that she’s not always able to. If I bring her something new and she hasn’t had time to read it yet, she will and we will discuss it at my next appointment. It’s a working relationship and not an authoritative one. To suggest otherwise is not okay with me. I just don’t think it should be one or the other, I think that being an informed patient AND talking to your doctor are BOTH important.
And if you think I’m wrong in thinking this is what they are suggesting in this question, I put a 3 or 4 for this and at the end of my assessment, Web MD gives you this “You’re missing some key things” and one of mine was “Your doctor is there to support you and answer your questions to help you manage your migraines. For example, when your treatments aren’t working the way you want, or are causing rough side effects, he (ugh) could offer alternatives.” Yes, I get this…. We do talk…neither of us are sure what the alternatives are at this point, but we keep throwing stuff at it and hoping something sticks, something I can afford anyway.
Okay, moving on. Next question, “I am willing to take prescription drugs even if my insurance company doesn’t cover them.” Well, no, not me. I can’t afford to. WebMD believes I should apply for assistance, but alas, I don’t ever qualify as my husband makes too much money. We fall into that loophole.
There’s some more I just answered without problem but then I came to this one that said “I wake up refreshed.” It made me laugh. I can’t remember the last time I woke up refreshed. This isn’t a disease thing. I’m a mother. I have a 6 year old and a 2 year old that has not yet slept through the night. No, I don’t wake up refreshed. However, WebMD has this helpful advice for me:
“Regular sleep patterns can help you feel rested. Try to wake up and go to bed at the same time each night. Have a wind-down routine filled with things that help you relax. If you nap during the day, keep it under a half-hour so that you can fall asleep at night.” Thanks WebMD, I’ll keep that in mind.
They also add that I should take a timeout as soon as I feel a migraine attack coming on and find a dark place to lie down so that I can move into self care mode. I am a chronic migraine patient with 30 attack days a month and two small children. I believe these expectations are unrealistic.
“Do you know your triggers?”
I’m not sure about this question. There’s so much controversy about triggers anyway. I’m 42 and have been trying to figure it all out since I was 15 and while there are a few I’m sure of, there are a lot that are super questionable. I read a theory recently that triggers aren’t even triggers, they are part of pro-drome, just craving and warning, but not actually a cause. Since there’s been no studies to show triggers as a cause, I might buy that. I dunno. I’m a little iffy on the whole trigger thing. It seems an awful lot like the blame game. If you just didn’t eat so much of this thing, maybe you wouldn’t have migraine disease. Triggers sure do seem to change a lot too.
The very next question is how do you handle it when one comes. Right now I don’t have a lot of options and that answer is really complicated for me because there’s not a sometimes this, sometimes that, sometimes none of the above option. It’s either you pick some or you pick none of the above. So I chose the things I do use occasionally which are ice packs, anti-nausea meds, and pain relievers. Of course, WebMD felt this was a terrible idea and told me all about triptans (which I can’t use), steroids (which weren’t an option at home, just at the ER on their survey and I rarely if ever choose the ER because I have a good doctor who gives me rescue meds for at home use), ergots which are a huge no-no for breast feeding moms, and opioids. Obviously I already know about all these options. I guess there are some that don’t, but we are supposed to be talking to our great doctors, right?
They also ask if I’m looking for a support group. I’m not, I’m looking to form one. The last one I was a part of was just disbanded. They recommend the AMF’s FB community, of which I am a moderator. I don’t feel that’s the kind of support that most people are really looking for though. FB is great, to a point, but the noise to signal ratio gets pretty low in a place like that.
Okay, okay, I recognize that this is likely targeted at those who haven’t thought much about their disease or those who are new to migraine, and I suppose that is okay. But seriously, the people that likely will come across it aren’t really. There are 38 million of us living with this disease today and in my experience, those that show up and take notice of stuff like this are the ones that are most effected, the ones like me that are finding this disease to be unmanageable much of the time. The ones that are desperate for good answers and new ideas. The ones that are looking for real help.
Instead all we seem to ever find are recycled answers, and these suggestions which seem less and less useful by the day. I can’t imagine saying to a paraplegic who is having trouble getting up a curb because there is no handicapped ramp “well, why not just go lay down instead, I mean, you can’t walk.” No, we’d say “let’s build a ramp” or “let’s help you up the curb.” But we don’t say that to migraine patients. We say “go lay down” instead of “let’s find better treatments.” We say “why did you eat that” instead of “let’s find out if eating that really did cause this.” To my knowledge there is no credible research to show the relationship between any food trigger and headache/migraine including things like sulfates and msg. Please, correct me if I’m wrong.
For too long doctors and practitioners have been pointing the finger and perpetuating the stigma and it is really really getting on my nerves. I appreciate the advice and I have taken a lot of it to improve my life. I agree that a healthy lifestyle improves the outlook for any migraine patient or anyone. Get exercise, eat well, get rest if you can, and do your best every day, but seriously, that’s anyone anywhere.
To completely change gears here, but not really, AHS just dissolved AHMA, an organization I had been involved with for several years. All I can think is that AHS just isn’t in touch with patients. At the Scottsdale Symposium I attended this session on doctor-patient relationships and the presenters talked about collecting data from patients to create forms for patients to fill out to assess their condition when arriving in their offices. They talked about collecting data from patients to create assessment tools to track patient’s progress. They never talked about talking to patients about patients lives. During the Q&A they said that even though they employed the use of these tools, these forms they had developed these assessment tools, they still couldn’t connect with patients and get patients to do what they wanted. They still couldn’t understand why patients weren’t being treated successfully.
I wondered in amazement at this as it seemed that not one of them had ever stopped to talk to patients. So I asked, why don’t you have ask patients? And they said “Well we did when we collected the data to form these tools” and I thought “but that’s not the same thing!” But it wasn’t the right venue to discuss this. I’d love to have a venue to ask a doctor to imagine how they would feel if they were just treated as a data collection device instead of a human being. Because we aren’t just data, we are people. And yes, based on the data that WebMD collected on me, I should get more sleep and I should listen to my doctor, and I should take different medications, but in reality, they didn’t bother to find out enough about ME to get the whole picture. This is why internet doctoring doesn’t work, why patients shouldn’t Google their symptoms, and why DOCTORS need to consider real PATIENTS when doing their doctoring rather than just the data.
Light in the Dark 