doctors – Life and Lims

Measles outbreak a sadly necessary wake-up call

My husband, who doesn’t follow news as closely as I do, has been commenting frequently this past week or two on the measles outbreak. It’s on his radar as much as it is on the radars of many other Americans who might not have realized how many people have been choosing not to vaccinate their children. Now, after measles has infected 102 people in 14 states just during the month of January, as the CDC says, the issue has been covered frequently in every kind of news outlet. Not a day has gone by that I haven’t seen at least one article on the topic just in my local paper.

Here’s what I have told my husband: Maybe it’s a good thing this has happened. Because, unfortunately, it usually takes a crisis to alert people to a problem. The problem is this: when a high enough percentage of the population isn’t vaccinated (a threshold we have reached now in the U.S.), diseases that used to be practically wiped out can pop right back up and infect — and kill — people.

I realize we are trying to tread a tricky line between individuals’ rights and government authority to compel people to do things. This is particularly challenging when those rights are ones that spring from religious beliefs. I am all too aware of how many religious beliefs have been trampled of late, but I think when it comes to the issue of vaccinations, the vast majority of those parents who are choosing not to vaccinate are not doing so because of religious beliefs. And their choice isn’t harming their own children; it is now actually killing others. That is when their right to choose ends: when it takes away someone else’s health or life. It’s as simple as that.

I reviewed a fascinating book fairly recently, On Immunity, a look at the history of vaccinations and the new class inequality created by those generally more upper-middle-class parents who are choosing not to vaccinate. It is a short book but one many more might want to check out now that the inevitable has occurred.

Some articles I’ve read most recently have indicated that some doctors are not accepting patients whose parents choose not to vaccinate or are having parents who had chosen not to vaccinate change their minds. That’s encouraging. I hope that this dangerous trend can be reversed before the situation gets worse.

One of Robin Williams’ final gifts? Getting us talking about mental health

I love this tribute to Williams by Disney.

Four days after the devastating news of Robin Williams’ suicide, I’m still feeling the loss of someone I never even knew personally. Perhaps it’s because his genius acting work has been a part of my life pretty much ever since I can remember (oh, yes, I was watching when he first hit the airwaves with “Mork and Mindy”). I can mark important times in my life with what movie he was doing at the time; for instance, my husband and I saw “Aladdin” on our first date nearly 22 years ago. Even now, our family quotes from that movie.

But another part of the reason this event has affected me so deeply is that it strikes close to home. I started this blog to write, in part, about mental illness, to just put my own experience out there. And Williams’ death has had me thinking a great deal in relation to how I can understand it and how I want to be able to continue to share my feelings with others. There have been some poignant tributes and some spot-on blog posts and articles about suicide, about depression, about the almighty struggle some experience with their mental health. I don’t think I can do any better, but I can just share my viewpoint.

Just a few weeks ago, I participated in a study focusing on cognitive issues in women who have breast cancer (I was part of the control group). I was happy to do my part for science, even if I had to drive a few hours away to get to Stanford University. Since the study is looking at cognitive effects of cancer or the treatment for it, it included questions and assessments not only about impairment of cognitive processes overall but also about emotional status. Since I had indicated on the questionnaires and intake forms that I take medication for depression, the researcher who worked with me asked me at the end of our time a little bit about my feelings and opinions on it. She said she focuses on psychology and has noticed in her time studying it that there are still not nearly enough treatments available for depression and other mental illnesses. Some people in the blogosphere and media have wondered why Williams, for example, didn’t just “get help.”

Here’s the sad truth: there isn’t nearly enough adequate “help” out there, whether it’s in the form of medications and other medical interventions and treatments or it’s in the form of professionals and non-professionals who really are good at what they do and can give superior guidance.

There is still an epic shortage (in my experience and opinion) in the number of qualified professionals who can treat people from all economic and health-care-coverage situations. This is particularly true in the case of the number of doctors or other practitioners who specialize in and are licensed to provide medications. In my experience, for instance, there are three psychiatrists covered by my health insurance (which might also be the total of all the psychiatrists in my city), and only one is taking new patients. That one I didn’t particularly like, and it’s crucial to have a certain level of rapport with someone who’s treating you for your brain chemistry. So I was lucky enough to hear about another provider who ended up being a better fit for me, but her office is an hour’s drive from my home, and her practice is not covered by my insurance. I am also lucky enough to be able to afford paying out of pocket for her care. But what about those who don’t have insurance at all, who can’t afford out-of-pocket costs, who don’t have access to transportation, etc.? There are a LOT of people not being served.

Then we move on to the issue of actual treatments available, even when one has unlimited access to doctors, therapists, and whatever medical intervention is available. And as the researcher and I discussed a few weeks ago, there are far too few options. I’m on an antidepressant that’s worked well enough for me the past couple of years to get me to where I can cope adequately with life’s challenges without being taken down completely. But there have been times medications weren’t doing enough for me, and it was hard.

There have been at least the number of times I can count on one hand, and possibly up to two hands, moments I’ve been in the blackest and deepest abyss and felt suicidal, even if it was only briefly. And I could go on and on about how if you haven’t been there, you can’t possibly know what it’s like. Logically, in a part of my brain, I knew I didn’t want to hurt my loved ones, didn’t want to deprive them of me. (That’s addressing the “selfish act” observation…) But it was a very distant part of my brain and one that was clouded over by the overwhelming despair and hopelessness of my feelings. As I’ve written before, it’s those times and others that I now feel my brain chemistry betrayed me. And it’s a very weird, unnerving feeling to have your brain working against itself and yourself. Even though I could logically call to mind times I enjoyed life and felt fulfilled and useful and vital and important to others, to the world, I just didn’t FEEL it. And it became impossible to imagine or believe I would feel that way again.

No amount of love and support and encouraging words from others (assuming the best, that one does have that kind of support system — believe me, there are plenty who don’t have that, making things even worse) can make that feeling go away. If your brain chemistry is off, it’s off. And that’s why we absolutely MUST find more options to treat that chemistry. There are far too few options now.

I appreciated this one article on Mashable, for example, that asserted, “Finally, We’re Talking About Mental Illness Like Adults.” People have generally been very thoughtful this week as they’ve discussed Williams. I sincerely and strongly hope that this discussion can continue, that a few important good things may come from this tragedy: 1) Let’s stamp out the stigma for good. Let’s work towards a culture in which people who experience any kind of mental illness can talk openly about it without fear of being judged or misunderstood or mistreated. Let’s make it as easy to talk about as any other illness that’s more “physical.” 2) We need to push for more research into more varied medications. There are a number of drugs out there (but not nearly enough) that are made for the treatment of mental illnesses, but a lot of them are similar to each other and work the same way. Pharmaceutical companies need to branch out and work on far more kinds of medications that attack mental illnesses in different ways, from different directions, etc. 3) We need more doctors. We need more prescribing practitioners available everywhere to everyone. This will not only be the kind thing to do, but one that will contribute to reducing many other existing societal problems: homelessness, joblessness, some violent crimes.

These aren’t easily attainable goals. But we certainly need to work towards them. It will make a world of difference to millions.

Medications and me

Having a mental-health concern (that seems most likely now to be a bipolar disorder) for the past 25 years or so has naturally led to my being on various medications to try to improve my quality of life. I’ve already discussed a bit how it’s been a challenge to figure out exactly what I’ve been up against over the years (just some depression? anxiety? postpartum depression or PMS? bipolar disorder? nothing at all?), so I’ll try to go back and address what kinds of medications my doctors and I have tried to use to help me feel a bit more “normal,” or, more accurately, just better able to cope with the usual stresses and strains of life.

The first I ever took some kind of an antidepressant was toward the end of my LDS mission when I was feeling serious stress. The resident older missionary/retired doctor prescribed me a medication that would supposedly help with that. At this point, I honestly don’t remember what it was he gave me. What I do remember is that I was in pretty bad emotional shape and just going about my regular busy schedule just with a new medication didn’t help me feel any better. Besides, it usually takes a few weeks for those kinds of medications to even start making a difference, and in the meantime, I just kept feeling stressed — and guilty or bad about being stressed while I was supposed to be happy and spiritual and serving God and my fellow beings. It just wasn’t a good recipe for success as a missionary or a happy human being. So I ended up having to leave the mission behind and go home to seek help in a different environment (already talked about how that went).

I was next put on lithium when hospital doctors decided I was bipolar. I took that for a bit less than a year, I think. I felt better as time went on, mostly, but I also went back to college, where I felt more at ease and myself and had my friends around me. I am sure that the medicine must have helped though, looking back, because otherwise I probably still would have been seriously depressed/angry/stressed. But the change of environment did contribute, and after a time, I just felt that 1) the diagnosis of bipolar disorder couldn’t really fit me because I didn’t fit the “classic” signs of the “full-fledged” disorder and 2) lithium is a serious drug to be on: it can potentially damage the liver. I was having my blood tested every few months to make sure my liver was fine, but it was still a real concern. So I went off the lithium. During all this I was seeing a counselor at school, so I didn’t do all this just on my own without any professional support, but I don’t know if I had a psychiatrist on my “team” at that time.

After I married and moved to California with my husband, I know I ended up seeing a psychiatrist regularly, but I cannot remember if she had me on any medication. I know I didn’t go back on lithium. She might have put me on some kind of antidepressant, if anything, but I don’t remember for sure, and I have no idea what it was if I did take something. I do know that the first year of my marriage was very rough for me emotionally, and I prefer not to think about the way I acted. It’s too embarrassing. Luckily, my husband stuck it out with me. I also know that I was on hormonal birth control pills for the first two years of our marriage, and I am convinced that fiddling with the sensitive balance of my hormones was not a good thing for me emotionally.

I know that there were months and years I didn’t take any kind of psychiatric medicine, and there were other months and years that I did. It was always some kind of antidepressant. I took Zoloft and Wellbutrin at a few different times off and on after and between pregnancies. I took them together for a year or so, mainly because Zoloft did take away my sexual response. That’s something that’s a warning when you take that and various other medications, such as Prozac, and it’s definitely true for me. It can seem like a small price to pay, but it’s actually a pretty big sacrifice when it comes to a full intimate life with your spouse, so it bothered me greatly. Taking the Wellbutrin with the Zoloft took that side effect away.

After probably my third pregnancy, my gynecologist prescribed me a new medication, Lexapro. He said it worked well and had no significant (definitely not sexual) known side effects. I was eager to sign up. The morning after I first started taking it, I got out of bed in the morning to use the bathroom and then ended up passing out on my way back to bed. I was so scared about the weird feeling I had during that few moments that I told my husband to call 911. The paramedics came out and pronounced me fine. They said I’d most likely rubbed the back of my neck or something and had some kind of vagal episode. OK. Fine. Unfortunately, over the next 5 or 6 days that I took the Lexapro, I still felt weirdly faint and out-of-body-ish, and I figured the only thing that had changed in my life was that new medication. I visited with my general doctor, who told me that was ridiculous. But I decided it was the cause, and I stopped that Lexapro. I instantly felt better, well, fainting-wise. (The lesson here: even if your doctor says you’re being ridiculous, you still should trust your instincts.) So I went back to Zoloft or something similar, I think.

I started going to a psychiatrist again, which I hadn’t done for quite some time, just getting antidepressants from my gynecologists or general physicians, although I had still gone to see counselors for talk therapy more regularly. The psychiatrist I saw at that point, probably in 2007 or so, put me on Effexor eventually, which worked well for me for a while. He did suggest I might be experiencing bipolar disorder and might benefit not from lithium, but Lamictal (lamotrigine). He even gave me a sample pack. Even though I did consider that option, I told him that since I was feeling pretty good taking the Effexor, it seemed silly to stop taking something that was working just to try something else. He thought that was reasonable and kept me on the Effexor.

Then in 2008, my family and I moved to California from a long stint in Alabama, and life became unbelievably stressful. I’d also been taking the Effexor for probably a year or maybe a little less. At any rate, I’d probably only done well on an antidepressant for a year or so at any time I’d taken one, either because after a while, my life had settled down and I’d gone off a medication and been fine, or the medication had seemed to stop working. In this case, I just kept taking the Effexor, but my new general physician upped my dose. Shortly before another momentous, life-changing event for me, the death of my beloved dad, I started trolling the Internet and found the site I’ve mentioned already by Dr. Jim Phelps, which made me start to seriously consider the possibility that I really did have a bipolar disorder. But this psychiatrist was making the point that there was a wide spectrum of bipolar disorders, not just the “biggie” in which people stay up without sleep for a few days at a time, go on wild shopping sprees and spend tons of money, and do otherwise really foolish things they wouldn’t otherwise do. So I found a psychiatrist in my new town who was on my insurance list and made an appointment. He put me on Lamictal, which my previous physician had suggested a couple of years before. It did seem to slowly make a difference, and I was happy to be off the Effexor, although it did take a solid two or more months to very slowly wean off of that very addictive medication. (If I didn’t get a dose, I’d start feeling kind of headachy and light-headed, in a distinctively Effexor-less way.)

So I think the Lamictal gave me some relief and some hope that I was on the right track, but a couple of months into that, my dad died and sent me spinning. My psychiatrist asked me at the first appointment after Dad’s death (merely two or three weeks afterward, mind you), “So, how are you feeling?” Uh. BAD. My dad died. I’m miserable. Hard to say how the medication is working. I’d feel rotten no matter what. And that’s how it went.

A few months after that, I mentioned to some people in my church congregation that I was struggling with mental illness, and a few recommended I try a different option, a natural formulation called EMPower that was sold by a company called Truehope. The company says that the formulation contains micronutrients that are found to correct the imbalances found in those with bipolar disorder and other mental issues. I have always felt that ideally, it would be nicest to treat the actual cause of a problem rather than just the symptoms, if at all possible. This sounded like a very reasonable option, and Truehope has actually been doing scientific studies showing the benefits of EMPower.

I felt that I needed to at least give this option a shot. If I didn’t, I would never know if it could have helped me or not. So I went in to my psychiatrist, who naturally told me he didn’t agree with my decision and that he couldn’t continue to see me if I went off my prescription and took EMPower instead. I knew he’d say that, and I was ready to say, “OK. I won’t be back.” He said he knew I’d be back in a few months in even worse condition.

I tried the supplement, which is actually pretty expensive (probably about $100 a month, and not covered by insurance, of course), for about six months. I felt at first it really did help, but after a few months, I was just not feeling good enough. I tried a few adjustments and options after some phone calls with the company’s support techs, but I finally had to make the decision to end my own personal “drug trial.” I am sure that the supplement truly does help lots of people, but as with anything, nothing helps everyone. I did struggle, however, with what to do next. I firmly did not want to go back to my previous psychiatrist. He was too abrasive, and I felt I couldn’t work comfortably with him to find the best options to treat me. I finally decided to go see a nurse practitioner working in psychiatry 45 minutes away from my town because my therapist had heard good things about her from several other clients. I felt that it was going to be best for my mental health process to work with a psychiatrist who I felt comfortable with, that we were really a team, that she would be supportive. So I made the appointment. This new person, who I still see almost 2 years later, turned out to be a really good fit personality-wise, which I think makes a big difference in getting the best care possible. The only drawback is that my insurance doesn’t cover her, so I have had to pay entirely out of pocket. Luckily, I have had the spare funds to be able to pay for the visits, and it has been a good choice for me.

I’ll just call my nurse practitioner by her first name for ease of writing. Susan really went into a lot of detail with me, talking to me about the options and what she thought might work to help me, even explaining why she felt that way. I personally have really liked her approach. I like to feel that we’re on the same page, and knowing her reasoning helps me to feel more confident that is happening. We tried probably four or five different medications over the course of probably four to six months, during which time I’d go back every month to see her and check in. We tried Abilify, Prozac, and maybe Celexa. I can’t remember exactly. I did notice Prozac didn’t make me feel any better, and it just made me feel completely dead sexually, which was super-frustrating for me. So that was a no-go. I also know the Abilify didn’t do it on its own, and it actually made me feel, rather than “more normal” or “more like myself,” just kind of numb emotionally. I wasn’t stressed, kind of, but I was just dead. I didn’t feel anything. I felt like a zombie. I absolutely did not like that. She ended up adding in Cymbalta, which felt pretty helpful. Eventually, we took out the Abilify to see if that would help me feel less numb. And it did work. The Cymbalta, at the time, on its own, was a good fit for me. I’ve now been on that for perhaps 18 months.

Unfortunately, I’m afraid that now we’re getting to a point we need to tweak again. I’ve been on just antidepressants before, and I’ve either just gone off them or they’ve stopped working, and I fear this is happening now. I’m just feeling unhinged. The stresses and huge demands on my time are taking a huge toll on me, and I’m not proving up to the challenge of dealing with them in an appropriate manner. I’m coming up in a few weeks on another check-in with Susan, and I think this time we’ll have to address now how to change my dose or try something else. It’s been nice, though, for the past year, feeling pretty good and “myself.” Descending back into my “crash” mode is a scary and upsetting thing, for me and my family, and it’s nerve-wracking for me to ponder how much trial-and-error it’s going to take to get me back to happy. Will it take a couple different medications again and weird feelings of numbness or just not-effectiveness (so I’ll just feel unable to cope for a few more months? Yikes!)? My main fear is looking ahead at a few months of not being myself, far from it, especially with summer months coming on and my kids being out of school and all the stresses that places on me every summer. It scares me.

So that’s where I am, medication-wise. I’ve been a bit of a guinea pig for the past 20 years. It’s difficult because treating any kind of illness can be tricky and require some finesse. The basic stuff is kind of straightforward (infection? take an antibiotic; cold? take some antihistamines and Sudafed and wait it out), but other health issues take some trial and error. Then when it’s mental health, which is still a kind of slippery creature in the early 21st century, and every person’s needs and body chemistry is unique, it’s a science that’s more art than anything else. Being the doctor is probably a challenge, but being the patient is truly difficult. Being that guinea pig, the one on different kinds of medicines, is tricky and frustrating as all get-out. I’ve said for ages I wish there were a control group for me. But there isn’t. Good science requires a control group and an experimental group, and in this case, giving just me a medication and seeing what happens isn’t truly good science. And the onus is still on me as the patient to make the judgment calls, to figure out what’s changed, what to tell my health-care provider, about what might be significant. Do I feel better taking Lamictal even though my dad just died? Can I possibly separate out the effects of that from my normal stress reactions? Can I say I feel better on something even though a bunch of stuff has been happening in my life? If I could put myself in a quiet room without any interference from outside sources, I could judge better. But that’s never possible. (And if I could be by myself in a quiet place — resort, maybe? that would be amazing — I may very well be able to get to feeling better without the medication. Maybe. At least I wouldn’t be bothering anyone else.)

This post is incredibly long; perhaps I should have separated it into a few parts. But it’s the best answer to those who would like to know what my experience is with medications. I hope it might be of some use to those of you who struggle with similar problems and need to figure out how to look at your own situations with more clarity. Perhaps it will just make some of you more sympathetic with those in your lives who have challenges similar to mine. Or maybe those who know me but don’t know all these details about me will feel more empathetic with me. Either way, I hope this is of use to someone out there. This is an ongoing story, so I will need to update as the next few months come along and I visit my nurse again.

Dear doctor

Over the years, I’ve come to realize that the doctor-patient relationship is vital to good health. As with any other relationship, it must be built on effective and clear communication, understanding, compassion, and just mutual “liking.”

Unfortunately, it’s hard to find a really satisfying doctor relationship. It’s hard enough to find friends out in the wide world of people, to find someone who just clicks, who is fun and understanding and supportive. When you’re narrowing down the pool of potential medical mates to perhaps 50 people in your town who are qualified and approved by your insurance, then finding that kind of chemistry in that small group is going to be a real challenge. And it’s not as if those 50 potential mates are sitting in one room, giving you an afternoon to interview them and get to know them. They’re holed up in an office somewhere, with crazy schedules, spending 5 minutes with each of their already existing patients, and walled in by receptionists who take messages and aren’t necessarily great conduits for starting relationships or even investigating the possibility.

So I don’t really expect my doctor relationship to be as close and mutually satisfying as a great friendship. But it still must have a few of those qualities for it to be most effective.

Here’s the thing: I know my body best. I’m not a doctor; I don’t have medical training. But I’m not completely ignorant when it comes to medical issues; perhaps that makes me one of those frustrating patients who knows just enough to make me dangerous. Perhaps it’s helpful. At any rate, that’s where I am. I do know that I’ve been in charge of my own medical care for 20-plus years, and I’ve taken all kinds of medications over the years, seen a number of doctors and some specialists, had some tests, and had a LOT of time to ponder on test results or effects of what I’ve taken or tried. I’ve been smack dab in the middle of my own personal lab experiment for all this time. I’ve said for some time now that it’s really unfortunate that I don’t have my own control group. That would make things so much easier. But I’m one person and I’m the control group and the experimental group in one. It doesn’t make for good experimenting. But that’s how it is.

I know these things: over the years, I have come to appreciate that any hormonal changes in my body really reverberate and effect my whole being, emotionally and physically. Female hormone changes can make me irritable or emotional; they can make me tired; they can make me bloated, and they can make all kinds of other waves I don’t even register in my consciousness. I know that I have a mental illness that requires medication, and that is also a very delicate state of being, to get to where medication helps me but doesn’t knock me out or make me feel numb emotionally. I know that if I don’t feel “right,” then I should look into whatever options there are.

Unfortunately, again, since I’m not medically trained, and I don’t have authority to write prescriptions for myself, I need a trained doctor to step in and work with me to find possible problems and possible solutions. We need to be a team. I will respect your training and experience, but I need you to respect that I can feel things in my gut about myself that you can’t. We don’t have a few hours for me to use all the words that it might take to express why I might feel something particular just “in my gut.” I have to figure out how to get it across in about two minutes. And if I can’t do that, then we’re stuck.

I know if I’ve gained weight. You don’t need to point it out. Believe me, I’m all too aware of it. And if you’re a petite woman who runs marathons and doesn’t have a problem with overeating, then I’m going to instantly feel that you won’t understand where I’m coming from, unless you put me at ease otherwise and try not to judge. I eat healthy, mostly, and I exercise every day. I’m doing the best I can. Pointing out I’ve gained 20 pounds and sighing and shaking your head won’t make me feel any more motivated. It will only depress me. Not only that, it will make me dread having to come in and see you. That’s never good. If I dread coming in to your office, then I’ll put it off, and everyone knows that putting off important medical care is bad. Plus, being anxious anticipating what you’re going to say will probably elevate my blood pressure readings while I’m in the office.

If I tell you I’d like to consider some alternate therapies or tests that you don’t usually use, I’d like your support. Sometimes, those require your signatures and authorization. Please don’t refuse because you think these things are a waste of time or money. If I feel that there’s something going on that your regular tests and medicines don’t seem to be addressing, I’d like the opportunity to waste my own time or money. At least I’ll know I’ve tried. I’m not way out there trying really bizarre things. So try to have a little bit of open-mindedness. Yes, I know where you’re coming from. But please understand how frustrating it is to feel “not right” and not have any answers. Rather than making a face and flat-out refusing, you could at least explore more why I’d like to try something else and perhaps find a way within traditional medicine to address that issue. You support my going to an acupuncturist. So let me try a compounding pharmacist, for example. But the second you squeeze up your face into a disapproving look and shake your head and refuse, you’re going to earn my ire (anyone who knows me would know that will just set me off). At least try to make me feel that you’ve heard my concerns and figure out a way to address them your way; at least make me feel that I’m an active partner in my own care. Don’t make me feel judged or condescended to or brushed aside. Work with me so I can feel validated and part of the team.

Listen, I understand that working in health care is tough these days. Doctors especially have huge debts from medical school and have to jump through all kinds of hoops just to get reimbursed halfway reasonable amounts for the work they do. Yeah, it stinks. I appreciate that. My husband works in health care, though he’s not a primary physician. So I’m not completely ignorant. I understand that you need to be true to the science you were taught that was thoroughly researched. But you have to appreciate also that the knowledge we do have is still pretty limited, and that a lot of research that has been done either used men exclusively as the experimental group, or averages have been calculated using the data from a variety of people. We also know that some research ends up being faulty or rushed and has to be reversed later on, with great human costs. Don’t blame me for being just a little bit skeptical sometimes. And simply averaging information gathered from groups of subjects and mathematically deciding that data then should apply exactly to my individual body chemistry and internal workings is not what I’d call the most effective use of scientific inquiry, either.

Most of all, please understand that how I feel is not just physical symptoms, but emotional. It’s all part of one big whole. If I try to take a few minutes to explain or ask for further help or thinking out of the box, please indulge me if you possibly can. If I don’t feel you’re hearing or understanding me, I’ll get more emotional. It’s natural. Don’t blame it on my “being mentally ill” or think immediately that I must need a higher dose of medication for my mental illness. “Normal” people have a wide range of how they express and show emotions, and it’s natural to feel frustrated when we feel we’re not being heard. It’s natural to feel emotional if you don’t feel well physically and there doesn’t seem to be an obvious reason. Please validate my feelings rather than telling me that I don’t have the right to express them in any way. I work hard to be kind and civil and understanding, but I am not devoid of emotion, and I cannot stay completely poker-faced when I feel frustrated. Don’t write me off. But when you say we may not be a good fit, you know what, you’re right about that. But sometimes we patients don’t have the luxury of finding a great fit. I just have to make do with that little group of doctors in town that my insurance will pay for and who are taking new patients. But if you know another doctor who might be a good fit for me, then by all means, please give me a name.

I would very much like to find a doctor who will be on the same wavelength with me, at least in how I communicate with words and body language and a little show of emotion. I’d like one who maybe even has a little sense of humor or likes to banter a little. Maybe with the way our health care system works today, that might be impossible to ask for both of us. If that’s the case, that’s very sad. And on a political note, if that is the case, then just making our health care system bigger won’t solve the problem. It needs an overhaul; it at least needs tweaking and adjusting. Let’s not just make a really ineffective system bigger so more people can be frustrated. Let’s dig into it and see how to truly make it BETTER.

Thanks for your time, former doctor and potential new doctor. I know you have a tough job to do. Thanks for going to medical school and doing the work you do. I just hope that we as a society can figure out how to do better in matching patients to doctors so this process of finding optimal health can be a little easier.

Sincerely, Cathy

Latest discoveries

It’s going to take a whole lot of posts to cover my life and experiences in this department. So I started at the beginning, but I’ve been jumping around since that first post. I’m going to try to explain a bit where I am now.

We moved to California in late summer of 2008 from Alabama, where we had lived in one town for 10 years. We were pretty well settled there, even though we hadn’t expected to stay there for so long. But our children’s needs, primarily, induced us to move cross-country. Though I had some time to plan and prepare for the move, the whole thing didn’t go nearly as smoothly as I would have liked. It took ages to get into a house of our own, during which time we lived with family and had all of our possessions in a storage unit. Then we waited and waited for our house in Alabama to sell, and after a year of waiting and one very low offer that fell through, we decided to rent it out. The stress of all those things, combined with the financial stress of paying two mortgages for a year, made life very difficult. I just felt depressed and frustrated and irritable pretty much all the time.

I had been seeing a psychiatrist in Alabama for a year or two, during which time he’d put me on an antidepressant that seemed to help fairly well. But with the move, it just wasn’t doing enough. So I started surfing the Web one morning and found a site that turned out to be very useful. It’s just a very simple-looking site by a psychiatrist who has shared many of his insights online. He also wrote a book called Why Am I Still Depressed? I pored over the site and then ordered the book. I decided that it was time to see a psychiatrist in my new town, rather than having my general doctor keep writing scripts for the old antidepressant.

The site had really struck a chord with me; its information led me to believe I was experiencing what this doctor (James Phelps) describes as bipolar II. Armed with this bit of information, I found one of the two psychiatrists in town that my health insurance covered and made an appointment. My new doctor and I talked, I shared my opinions, and he prescribed a new medication; he called my condition “atypical bipolar disorder,” but it’s just a slightly different name for what Dr. Phelps called bipolar II. The new medication seemed to work fine, and just knowing I had new information and a new medication gave me hope.

Three years later, this is still the diagnosis I’m working with. I’ve tried some different meds and a different doctor (I’ll write other posts on those topics), but we’re still going with that. Honestly, though, I still wonder how many other factors are at play. Dr. Phelps’ website talks about how thyroid disorders are sometimes tied in with bipolar II, and since I’ve been hypothyroid for about 12 years now (well, that’s when my doctor and I discovered it), I can’t help but think it may play a part in what I experience, even though I have been on thyroid replacement medication for all that time and it’s supposedly controlled (according to blood tests that my current doctor administers every year: and THAT, again, is a whole other topic). I also have noticed that I feel particular sensitivity to hormonal fluctuations, during pregnancy and postpartum and my monthly cycles, and those must be factors as well. I’m fascinated by how things work, and the complex interplay of hormones in the body is so interesting to me (I even wrote a paper about hormones for a research project in English in high school before I knew how personal it was). So I would love to figure out exactly how all these things work together to create my particular issues. Doctors, however, basically don’t seem to care about this (How could they not? Do they not have any curiosity?), at least when it comes to treating me. They just want to know that they’re finding a good medicine to treat me, and that’s all that matters. They have a point, I suppose, but I’d just love to know how all this works inside me. As far as we’ve come in being able to treat mood disorders, it still feels like we’re kind of living in the 19th century treatment-wise compared to all the other feats of medicine that exist.

So I could say now, “Well, this is it. I’m almost 42, and I’ve finally figured out what’s going on with me.” But even though I feel fairly confident that I’m on the right path — and it’s a big relief, I must say — I still wonder if in 10 years my diagnosis might change and I’ll look back and say, “Gee, we were close but not quite there.” At any rate, this is the best we have right now, and we’re going with it. It’s something, and something is better than nothing. I suppose, when it comes down to it, this is really just an extension of my previous post, “What’s in a name?”, because we have a name but that name could very well change. It’s just nice to have a name; it helps me to wrap my mind around what I experience, it helps me on occasion to explain to others if I feel so inclined, and now it might help you.