Recently we were talking about dealing with a job/career along with chronic headache, cluster, and migraine. Rosalind Joffe often has good ideas at her blog WorkingWithChronicIllness.com. Check out her recent post Networking: as easy as 1,2,3
This week: Organize your Medical History.
I’m always reminding you that you need to work with a doctor or specialist who knows your medical history. Great, but in this modern world you may have several doctors at one time, or several over the years as you move, change doctors, deal with different conditions, etc.
It’s critical that we be responsible for our own health information. We need to have a handle on it before we can expect our doctors to. After all, it’s more important to us. That key to finding treatment may be something your doctor doesn’t even think to ask you.
There’s lots you can do to organize your medical files. The more organized you are, the better. However, it’s better to do something than nothing.
So if you don’t do anything else, grab a box and start throwing all your medical information in there. Simple, yet effective. A great place to start.
But again, the more organized you are, the better. For example, do you have a record of all the drugs and supplements you’ve taken over a lifetime? Doses? Time taken? Start now. What about family medical history? What conditions and diseases did your grandmother have? Grandfather?
There are many tools online to help you organize, and many insurance companies have tools to help you as well. However, be cautious about putting everything in an online system that could be obsolete in a few years. Keep hard copies.
Ready to get really organized? Here are a few online resources to get you thinking:
What is 1% Thursday?
 |
Every Thursday at Headache and Migraine News (weather permitting) we’ll talk about one measurable, practical thing we can do to make our lives just 1% better. Usually it will be something very easy, sometimes it will be a challenge. Let us know if you try it, or share an idea of your own – and maybe a year from now we’ll see that things have really changed for the better!
The ever-popular topic of migraine and food was the theme of this month’s Headache and Migraine Disease Blog Carnival. As you might imagine, it was a hot topic, with a lot of entries!
Staying on topic but taking a different slant, I entered my post Enzyme Supplements and Migraine. If you haven’t read it, check it out and leave your comments.
There were lots of other good posts, but let me recommend a few especially:
Be sure to check out the full list of entries here: June 2010 Headache Blog Carnival: Food, Glorious Food. Read more about migraine and diet here.
Don’t miss this month’s Headache & Migraine Disease Blog Carnival, hosted this time by Teri Robert. There are some interesting entries, including my own. 😉
Also included is a link to the very special 2010 Migraine Poetry Contest – you won’t want to miss that!
So head on over to April’s edition of the Headache & Migraine Disease Blog Carnival!
I just finished reading the brand new (2010) book, The Language of Pain: Finding Words, Compassion, and Relief by David Biro, MD. Â So – let’s talk about it!
Today I was standing in line at the bank. On the back of someone’s t-shirt I read,”Pain is weakness leaving the body.” The quote has been made famous by the US Marines.
All right, I know what they’re trying to say. But if pain is weakness leaving the body – why do I feel so much weaker today (post migraine attack) than I did Saturday (pre-migraine attack)?
You might actually be surprised how much debate there is over how to define pain. What is pain? Is it a warning – something that keeps us from harm? Yes, sometimes. But sometimes pain causes the harm, it seems. Or even takes on a life of its own.
 |
Pain, whatever it is, drives us inside ourselves. No one understands, and words seem to go from a stream to a trickle until they finally dry up.
Perhaps a good introduction to the book is in the author’s postscript:
… At its most intense, there is no time to think, let alone try to represent how one feels. … So why bother trying to speak? Why not just close one’s eyes, as I did many years ago in my hospital room, and wait for it to pass? And for those who witness pain, why bother trying to break down the wall of private experience and attempt to share what cannot be shared?
The simple answer is that we must. We must because the consequences of not trying are too great…
We must… but — how?
The goal of the book, if I could summarize it, is to free our tongues so that we can talk about pain (or draw, pain, sing, – most forms of expression fit in this case). Not only talk about it, but talk in ways that help us to understand it better. To deal with it better. And to share in ways that help others understand a little better – doctors, friends, family – the world.
It’s amazing that such a big topic hasn’t been discussed more. Don’t get me wrong – art, visualization, conversations of all kinds have been going on throughout history, and are strongly in the mainstream of medicine today. But the how – how to express pain – it’s a topic we don’t talk about enough.
Dr. Biro has done an excellent job tackling a very difficult topic. He’s done his research – everything from the literature of Charles Dickens and and James Joyce to the paintings of Frida Kahlo to the expressions of cancer and migraine patients.
He’s also navigated the very tricky waters of philosophy. It’s easy to get lost in the never-ending mazes of philosophy, and perhaps he does get a little off-course when he touches on ultimate questions, such as God and pain. But over all, he does a remarkable job sifting through philosophy and coming up with something very practical.
That practical thing is a box of tools that you or I can use to express – and understand – our pain better. He introduces us to different types of metaphor – different ways to approach the topic.
I’m more convinced than ever, after reading The Language of Pain
, that being able to express our pain is key. Â Key to survival, key to understanding, key to treatment – yes, even key to finding cures. Â As the author writes:
Physicians like me are often humbled by the uncanny sense that some patients have about what goes on inside their bodies. Deciding that something is wrong with them, or, less commonly, that nothing is wrong, patients will blatently contradict the assessment of their doctors and the “objective” data gleaned from sophisticated medical tests. Often they turn out to be right.
But many of us have only experienced the opposite side of communication. The vacant look when you try to explain. That look that says,”I won’t say you’re lying, but I know it can’t be that bad.”
The doctor that brushes you off. The employer that thinks you just want to take a day off.
But as powerful as misunderstanding can be, real communication can be just as powerful when it comes to solutions.
Dr. Biro isn’t exaggerating. If we want to move forward – and fight things like migraine – we must communicate. And it’s a skill we can learn.
It’s taken me a long time to get to this review. Not because I wasn’t interested in the topic, but because this isn’t the kind of book you can scan. It’s not a long book, but it’s not a book to rush through. You need to take the time to understand what is being said, and hopefully let it become a part of you, so that your creative expression starts to show it.
Though it’s not an easy read, it’s certainly not just a book for “artsy” people or clever writers. It’s for every patient in pain – and that’s the point.
I have a feeling this book won’t be read as much as it should be. Then again, more and more people, both patients and professionals in the health care field, do seem to be more and more aware of the necessity of clear communication. If that’s you, this is a great place to start.
You can also find The Language of Pain: Finding Words, Compassion, and Relief
