Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Friday, December 28, 2007

Getting Good Treatment

I've said this in posts, but never have devoted a post to this. No matter how miserable I have been at times, you can go back through this blog and see that I always know that I'm getting the best help available to me. That's not coincidental with the question of how can I be as sick as I've been and still work, etc. Good treatment is the #1 thing with me and always will be.

I see so often people who aren't feeling better, who feel misunderstood, who lack a sense of control over how they are treated, and who are angry at their doctors. Yet it is hard to argue with a doctor or refuse a treatment. Many times those people will have a list of meds that I read and think "if I know this is not a particularly effective combination then why is this doctor telling the patient it will cure them?". It's true that there are meds that work for some of us and not others, but it is also true that some meds are used as mood stabilizers while the literature says they are not effective.

I think first off, everyone needs to know this. As a healthcare worker who is not a doctor I see this all the time. People, doctors ARE NOT GOD. Never let your doctor push you around. Listen to them and if you don't like what they are saying then find another doctor. Your doctor should be open to your ideas and suggestions. If you just have a bad feeling about a med and want to hold off trying that one in favor of something else, your doctor should either explain the reasons behind drug one or give you another drug. Just know that you may wind up like me and wind up discovering that the drug you've avoided for 2 years is a miracle drug for you. But I had good reason to want to avoid it and avoiding it probably made it all work out because avoiding Seroquel is why we put my Depakote dose so high, and I think it is the combination that is so good. You have a right to ask questions and a right to ask as many as you want. If you feel rushed ask to book a double appointment the next time. Your insurance will pay, it's just a different billing code. If you feel you need to see the doctor more frequently than ask to schedule that. If you want your doctor and therapist or your family doctor and psychiatrist to communicate then ask them to do so and sigh releases. I have gone to the same counseling center for nearly 6 years. Everyone there knows that from time to time I'm going to ask for an extra appointment. 18 months ago when I was on disability we did that whole time with bi-weekly visits; this time I only had 2 visits a few times. But if I think my moods have gone crazy then I'll be in there without even thinking twice because I am the one paying the therapist to help see the moods, and if he doesn't like it, too bad. And yes, that's a conversation we've had.

I guess the point here is this: if you are taking your meds and you don't feel good, something is not right. If you or your loved one takes the meds and the behaviors are still there, (still there a lot, sometimes things are still going to be there some), if it seems like it should be able to be better, then you need to get someone to be changing things around. I've been on over 40 meds at generally every dose for each and in different combinations. I can't imagine how many combinations that's meant. If your doctor says that whatever you are on is the best for you and doesn't have a good reason, find another doctor. There are certain things that are standard when treatment seems to not be working, like switching mood stabilizers to the ones with most proof of effectiveness or dropping an antidepressant.

Second, don't see a doctor you don't like. I did this. I nearly killed myself. I have never, in all the years I have battled bipolar, come so close to suicide. And that was several months before that same doctor put me on Prozac, which had everyone in my life thinking I was going to be signing into the hospital within days.

Third, and this is a big one, realize that your health is worth extra effort. So often people say there aren't any psychiatrists where they live. Well, I live in rural Appalachia. So you are very unlikely to be any worse off than I am and I have super doctors. I think there is one psychiatrist in this county and he is at community mental health. I believe my insurance covers 6 in the nearest city (an hour away) and the last time I checked none would accept a bipolar patient. I skip that city and the next one to go to a major city with a major university hospital. There are actually 2 in that city and I've gone to both. One of the is one of the top in the world. My doctor is "just" an expert but it makes such a difference that she is part of this academic world where she can (and has) contacted the top doctors at both of these hospitals about me.

When I was first trying to get a real diagnosis a convulted process got me to university #1. I actually called #2 first because it is the more famous of the 2 but they insisted on having records from the doctor I was currently seeing. I didn't want to tell her I was switching. I argued and they tried to put me in partial hospitalization based on a phone screen. It freaked me out. So I went with #1. I learned with them to be very, very honest. At first they couldn't get me in for something like 2 months. I burst into tears because I knew I couldn't last that long. They offered hospitalization but my insurance wouldn't pay for psych. So they found me a place within a week. I was enrolled in a clinical trial within 3 weeks of that appt.

After the clinical trial I switched to my current doctor who ran a few days a week clinic in the closest city, along with her own private practice. Last year she closed her practice and joined hospital #2, so now I go there.

When I was coming off the clinical trial my therapist arranged for me to see this psychiatrist. She's very good. She seems to intrinsically know what will work. She has never hesitated to try things, even things that were somewhat odd. She lets my messed up body dictate what happens. She cares, enough that a few years ago she called me on Christmas Eve to be sure I was doing ok. As I said yesterday, I go every 4 weeks without fail (I have never gone more than 6 weeks without seeing her in 5 years) and the shortest visit I've ever had was 45 minutes. The longest has been close to 2 1/2 hours. Generally it is 75 minutes. I have her email address. I can also call and her secretary should know that I'm a fragile patient with a history of serious med issues. And I can control many things. I am allowed to ask to put off trying this med, or to try increasing another before adding something. She absolutely listens to me.

I drive 2 hours each way for every appointment. That means that 1 Saturday per month (she sees me on Saturdays) is a 6 hour committment to psychiatric care. During the winter I spend the night on Friday so it is actually a 36 hour committment those days.


Anything you spend on medical costs over 7.5% of your income is tax deductible. This makes it ok to spend a substantial amount on medical costs because you'll get it back. Last year my medical deduction was around $6000. It's easy to reach that 7.5% with typical bipolar care because therapy, psychiatrists, meds, and anything not covered by insurance count. You can also count mileage over a certain distance (I think 50 miles) and lodging. I just plan financially that I'll spend this huge amount and then get it back in the spring every year.

Also, do the math. My doctor's current charge for my long session is $219. My co-pay is $50. My insurance covers the rest. Several months ago I looked into a job change with a change of insurers. I did some math and learned that if I had to pay 30% (the out of network fee) it would only be $15 more than I pay now. And remember, that will come back in your taxes.

In summary, don't accept bad care. There are hundreds of drug combinations and it sounds like many people are being given things that don't help enough and left to hang. It is so hard to advocate for yourself when you feel horrible but you have to.


Emilija said...

This is an excellent post. There are some lucky people who can get by with standard first line drugs, and maybe just about any psychiatrist can prescribe them. But if you are not getting better with first line drugs, or have untolerable side effects, you really need to get to a really good doctor. In some cases you may just need a consutation(s). In some cases you may need to switch, especially if it is going to take a lot of trial and error to get to a good mix. But don't just settle for anyone to get you on good meds.

Emilija said...

I looked at the table on mood stabilizers. Funny, the only study on topamax was negative, but it worked very well for me. Just bad cognitive side effects. And lamictal is approved for bipolar by the FDA but it makes me manic (although I think a lot of studies do back this up that lamictal is better for depression than mania). I think that studies are only averages, and that some people's brains react differently.

Just Me said...

I wrote a whole post in response. See above.

BipolarLawyerCook said...

This is excellent. Would you mind if I linked to it from my blog? bipolarlawyercook AT gmail DOT com

bipolarbear said...

I didn't realize that I'd get all this money back on my taxes. Now I don't feel so awful that my pdoc isn't covered by my insurance. Thanks for a great post!

Jen said...

Thank you for this. I will encourage my BP1 husband to search for a new doctor who is willing to work with him on his meds and won't flat out refuse to try other combinations.

Lurid said...

You are brilliant. Thank you.