It's like Santa or God...

A reworking of previous posts regarding my leaning toward eschewing belief in the unseeable, unknowable.

I was diagnosed with bipolar disorder (Type II) five years ago. I thought it was odd to suddenly be diagnosed with something of this nature at such an advanced age, although I had experienced several serious bouts of depression throughout my life.
The more I read and learn about this condition, the more convinced I am that it is just that--a condition, not an illness. I was diagnosed based entirely on my own reporting of symptoms, just as I was when I had depression.

I was raised in a family where we were told depression and bipolar disorder were not illnesses at all but manifestations of immaturity, emotional weakness, and poorly managed stress. This is why meditation, yoga, adequate sleep, and diet are recommended as helpful treatments.

Isn't most mental health knowledge really just conjecture? Nobody even knows why lithium is prescribed for bipolar disorder--is it just a placebo? Does anyone know for sure why it works? Has anyone actually seen a neurotransmitter? How are neurotransmitter levels measured? How are they tracked and observed within a bipolar or depressed person's brain? If emotional problems like depression and bipolar disorder can't be identified through any tangible means such as a blood test or imaging, then who can say that they even exist?

Isn't depression an emotion? How did it evolve into an illness? Isn't bipolar disorder an emotional issue and not a physical/medical condtition? I'm skeptical about remaining labeled with a highly stigmatized condition that has no tangible means of proving its existence.

Despite trying to live a healthy lifestyle, I have gained 60 pounds from taking medications for an illness I'm not convinced I have. I am sluggish and cognitively dulled. I plan to wean myself off of medication and I'll try to do a better job of managing my emotions and stress without pharmaceutical treatment.

Frankly, I don't see any reason to take medications for illnesses that nobody can prove I have--or that even exist. I made this decision a couple of months ago, pending the outcome of the MRI. The neurologist said that my brain looks, "really good." No bipolar on film.

How many people are sent to therapy following a bipolar diagnosis? Is it because the medications aren't what's really providing therapeutic value? I refuse to go back into therapy. My life is pretty clear to me. I can't think of anything in my mind that needs to be healed other than the humiliation of knowing I totally bought into having nonexistent illnesses. Am I sad? Yes, definitely. The thing that makes me sad so often is that I have significant cognitive difficulties. Being stupid is devastating. I cover up pretty well, but honestly, I think medications are making me worse, not better. I'm living a fraction of my life. As I've said before, I'd rather be dead at 53 having lived my life fully than make it to 73 because I sat on the sidelines sucking down pharmaceuticals that didn't even make me feel better or cure any condition I was told I had.

I'll still have to see Dr. G and Dr. B a couple more times so they can prescribe doses that titrate down appropriately. I need to talk to Dr. B about how much of my diagnosis is fact and how much came about because I was prescribed an SSRI that spun me into a hypomanic mixed state--a condition I never had before. Or since.

How many books and psychology experts are out there saying that to be healthy, de-stressed, and well-adjusted, we simply need to make up our minds to feel that way and it will be so? I tried mainstream health care; now I'll see how the opposite school of thought works for me. Benign neglect certainly can't be any less effective than anything else I've tried.

From now on, I'm only going treat illnesses that have tangible symptoms. I'm all about proof and the concrete. How do you think I became an atheist?

You know it's almost here

It's not Christmas until this lady sings: Darlene Love performs on Letterman every year on the last new show before Christmas. That's tonight!!!

This is a Christmas tradition I've only missed maybe twice in 20 years (including the writers' strike in 2007). I've written about this every year since I started this blog. It's a weird holiday tradition, but Dave Letterman and I both appreciate it.

Crank up the volume!

Hearts will never be practical until they can be made unbreakable

Everyone I have ever loved has eventually broken my heart. Disappointments are one thing, but heartbreak involves betrayal, pain, or the realization the person you love is not that person at all.

I have a hard time keeping friends. Some drift away, but usually, I just walk away. Despite my overall low self-esteem, my expectations are quite high when it comes to relationships. Hurt me once, shame on you; hurt me twice, well, no, the opportunity for that isn't going to be there.

At least one friend was fired based on the possibility of disappointment. MJ and I met through work about 14 years ago. She had erratic moods and behavior, but she was a good friend. When I was newly diagnosed with bipolar disorder, MJ admitted that she was also afflicted. She told me how she had struggled with finding the right medication, with leading a normal life, with two suicide attempts, and with not dwelling too much on what other people thought.

In those first weeks of my diagnosis, I talked to MJ frequently. I had a million questions and there was a lot of information that only a fellow sufferer could understand. One day, Sonja--who was also MJ's friend--said, "Let me give you a word of advice here. MJ is not reliable. Don't depend on her too much. One day you're going to need her and she's just not going to be there."

I thought about that for a day or two and then I removed MJ's contact information from my phone and email contacts. The same question kept coming back to me over and over in the days after Sonja's admonition: If I can't depend on a friend when I really need her, then what's the point of having that friend at all? What kind of friendship is that?

That was 2004 or 2005, and I've only spoken to MJ three or four times since--and then pretty much by chance. I miss her, but that is greatly outweighed by the possibility of her hurting me.

In the last year, I've lamented the fact that I can't hold onto relationships. It's one of my biggest shortcomings. I believe I do my part, and that's why I expect others to put in the same effort. Take it seriously.

This topic is on my mind because of Joanna. We used to talk frequently, regardless of our respective geographic locations. We helped each other. We were supportive. We tried.

Joanna is an important scientist who works for the government. Apparently, her head is so full of science that the part of the brain that normally controls actions such as dialing a phone or answering an email has been completely excised. Have I called? Yes. Have I emailed? Yes. Have I received any acknowledgement at all? None whatsoever.

Frank and I were trying to figure out when, exactly, we last heard from Joanna, but we couldn't come up with anything in 2009. The last conversation was about three hours long.

Here's the thing. I don't need a three-hour phone call once a year. I'd prefer to know how Joanna is doing all throughout the year. I don't need a marathon phone call or a novel-length email. A simple reply to "Hey, how are you doing? Is everything OK?" would suit me just fine.

I've wondered if she's alive or not. I've wondered if the man she lives with but who doesn't love her is intercepting my phone messages. Has he somehow manipulated her mind?

One of the things about Joanna is that she has always been able to identify the perfect gift for me at any given time. Last year, this hit a snag when she bought me a life-size cardboard stand-up of Glinda, the good witch of the north. I'm a big Glinda fan, don't get me wrong, but I live in a 1200 square-foot house that is already too full of weird stuff that my mother insists on forcing on me. Glinda remains folded up and shoved between storage cabinets where she gets whacked by the doors and where Frank accidentally kicks the edge of her dress (and swears) at least once a week. Sending me the picture from the catalog would have made me laugh; sending me the 6-foot stand-up Glinda just irritated me.

After hearing nothing from Joanna for a year, a Christmas gift showed up on my doorstep. It was from a company that ships packages of Philadelphia foods to those who miss the taste of home. The box contained a hoagie (meat sandwich), a cheese steak (meat sandwich), two Philly pretzels (big carbs I can't have), cherry soda, Golberg's peanut chews, and some Tastykakes.

Let's play, "How well do you know me?" Ummm, I'm a vegetarian and I have been for years. I don't drink anything carbonated and I haven't for probably 15 years. I don't eat chewy breads because of my Eustachian tube dysfunction (doctor's orders). I haven't been able to eat chewy, sticky candy since the early 1990s when I had complex dental work done; in fact, I can't even chew gum. The Tastykakes are in the refrigerator, chilling in a box of spite.

This would have made a lovely gift for someone, but giving it to me really just shows a complete lack of thought. Does the thought still count if, in fact, there is no evidence that thought actually occurred? Has this woman completely forgotten who I am?

After opening the box and laying out the contents on the kitchen counter, I retreated to the living room sofa. For the rest of the evening, I fought back quiet tears, mostly without success. It wasn't because the gift was all wrong; it was because the gift clearly demonstrated how the friendship had apparently become nearly meaningless to someone who I had, until now, always assumed would care about it as deeply as I did. It was devastating to realize this loss.

Frank ate the cheese steak and the pretzels, and he gave everything else away to coworkers.

This is not how holiday gift-giving works. Does it? A heart-felt gift and a gift hastily given out of a sense of obligation are not one and the same--and it's hard to disguise the latter as the former.

All I really hoped for was a phone call or an email. Don't send me a useless gift and expect it to speak for our friendship. Or maybe that's exactly what it does.

Even more normal

On Friday, December 11, I had a full MRI of my brain, with and without contrast. On Tuesday of this week, I met with the neurologist to get the results. I met with him less than five minutes. Actually less than five minutes. Wouldn't a phone call have been easier and a lot cheaper?

The MRI is normal. That's good news, but it leaves me without any answers. Thousands of dollars and over a year of trying to find out what's wrong, and the only thing I know is that I'm broke. And I still feel unwell.

This tells me that there is no reason at all for me to continue treatment. What is the point of seeing doctors and taking medications in the absence of a tangible diagnosis? Do I have bipolar disorder? Prove it. Is my pain nerve related? Prove it. Are my symptoms tied to a vitamin imbalance? Prove it. Can't? Didn't think so.

Operation Detox commences now.

May could really benefit from some love and friendship.

My self-esteem and I are not in a good place. Waking up every day this week to 8-degrees-below-zero on the thermometer doesn't improve my view of life any, either. I cry on average twice a day. Not cry, exactly. Weep.

Compounding my misery is the fact that I itch horribly. The itch isn't as bad as the sensation that insects are crawling on me, stuck between my skin and my clothes. This could be a result of B-vitams deficiency. Or Vitamin D deficiency. Or protein deficiency. It's all in the blood work, apparently.

More whining tomorrow.

And so it goes.

Dr. S is incredibly perky and optimistic, even when she doesn't have any actual answers. In her office today, her assistant weighed me (199) and measured my waist (?) and hips (48). I've had an unexplained weight spurt that came on so suddenly, my stretch marks are bleeding.

I do not have candida, celiac sprue, or any other number of systemic health issues contributing to my quote, "general malaise." So far, the only possibility is a nutritional deficit that includes malabsorption of B vitamins, Vitamin D, and protein.

Dr. S is completely OK with this. She believes that once the vitamin problems are resolved, my mood will follow, as will my energy level, thyroid function, and cognitive deficits. No real commitment on curing my bipolar disorder and overall dorkiness.

Once Dr. S. runs out of answers, I'll be left with the inevitable explanation for all that bothers me: It's all in my head, I'm neurotic, and I suck as a human being.

I do not believe that we live in a world where anyone much cares about "what's inside." Inner beauty is a consolation phrase people use to comfort their fat, homely, mentally ill friends.

Perhaps my mood is colored by frustration. I never feel well, and yes, I do try to feel well. I do not believe my discomfort is rooted in deeply-buried emotional pain. Oh, please.

December 31 is coming. No answers by then will launch the next phase of being me. I have done things the way they were prescribed but without any resulting benefit to myself. No more doctors, no more medications. Enough.

It occurred to me today that since the temperature has been hovering at about zero degrees (windchill, -8) for the last four or five days, that these are the ideal conditions for my "has a plan, has the means" end-of-life scenario. That's not at all where I am these days. Maybe next week, after I get the results of my $5,549 brain MRI.

Normal

How is it possible to have so many symptoms, to baffle doctors, and yet have all tests come up normal? If this is normal, I can't imagine what truly sick would feel like.

Many vials of blood and several specialized tests later and all we know is that the blood work came back showing no anomalies at all. None.

No more sitting on the sidelines. I plan to start running myself into the ground like I used to with work and the nonprofit. Apparently, I never needed to scale back, after all. No harm has been done. I'm already senile and exhausted, so it's not like being rundown and stupid is going to result from manic multi-tasking. Of course, I was better at that when I was hard-core hypomanic. I miss it.

I hate life right now, and not just because it's sub-zero freezing and there's snow on the ground--again--when it's too early. I hate feeling so foolish. My doctors must think I'm a hypochondriac.

Granted, this most recent round of blood tests was normal, but it's just one of several sets of labs showing nothing out of the ordinary.

I give up. The next plan (mine) is to titrate down on all medications and go organic. If there's nothing wrong with me, then I don't see the point of taking medicine for illnesses I don't have. The big one--the one that makes me feel so, so bad about myself, well, I haven't decided about that one. Maybe it was all just a medication reaction crossed with extreme stress and a lack of coping skills. This one can't be seen on any test, either. So many naysayers claim it doesn't exist, and when I see people with extreme irrational behavior with the same diagnosis, I think, "That's nothing like me." Maybe I'm just immature.

My goal for first quarter 2010: No medication. I gotta be me. And if that doesn't work out, I will just cease to be.

Words

"Write under your own name he said. There's no reason not to take credit for your own work." We were at a baseball game, and I had to squint to keep the setting sun from poking me in the eye.

"Aw, I don't know." I sipped my beer and tried to explain my reluctance to put my name on my work. The conversation started because I said I hold back my real work, my best writing. I said I feared not that nobody would read my writing, but that someone might steal it and pass it off as his or her own.

"Yaaa," he said, waving off my argument into the summer air. "Words. They're just words, and there are plenty of them to go around. Say what you want to say and take credit for it."

I had been to protective of myself. It's not that I think I write all that well, but when I create something, I want credit where credit is due. It has been on my mind lately. Several years ago, I was invited to consult with a very well-known and respected organization that provides technical support and training for agencies around the country that work with refugee populations. I was hired to do some training on the West Coast, and it went well.

I felt a bit uneasy, though, because as I was facilitating the training session, I noticed that one of the people from the organization that had brought me here was taking copious notes and collecting one copy of each handout in my presentation. Several times in the course of the day, this woman commented to me, "That was a really good point." or, "I never thought to explain it that way."

About a year later, I was on the program at a conference about connecting communities and including newcomers in community building. I sat in the front row of a large auditorium downtown. After I spoke, a group from The Organization got up to talk about cultural adjustment in the context of immigration. Looking up at the huge screen on stage, I was more than a bit stunned to see slides from my training program being used. Without my permission. Without even a nod of credit. Without any acknowledgement that I was even in the room.

My coworkers were all shooting me the "WTF" look. I wanted to stand up and shout, "Screw you! How dare you steal my work and imply that it's your own?"

The feeling took a long time to pass. A really long time. There's a possibility it still hasn't passed. Maybe this is also why I feel like it doesn't matter what name I type onto the page. Maybe it's why I can't bear to say all of those words that held in safe keeping deep inside of my head.

Words. Does anyone listen? Does anyone pay attention anymore? Does anyone go beyond the soundbite? Do words matter? Do I have anything worthwhile to say? Probably not so much.

This was actually a good month for words. I was on the local public radio station earlier in the month, and then on national network news, and very recently on NPR--nationally and in the middle of drive time. My words, my voice, my thoughts. Did anyone listen? I'll never know, but I was encouraged to learn that people at major media outlets thought my words were worthwhile enough to share the airwaves with far more important and interesting minds.

Oddly enough, I was so emotionally and intellectually drained after my tour-de-media, that there were no words left for my journal. It's unfortunate because there's actually a lot going on in my life and in my brain, and I know that getting it all out in words keeps me from getting lost in my head. My sense of direction is already starting to wane.

The best treatment

I've been living in a whirlwind of doctor appointments, medications, advice, daily routines, work, self-education, wondering, lab tests, work, and symptoms that are as random as they are transient.

My life as it is currently takes a toll on me--part physical, part emotional. It's one thing to be sick, but to know you're sick without knowing what you're sick with creates a constant low-level frustration and anxiety. It also becomes exhausting.

Awhile back, Dr. G suggested that I cut back at work. I told her that sounded like a great idea, except there aren't many things I'm qualified to do, and certainly almost none that would bring in my current pay. Besides, I told her, doing nothing, laying low, having no real action in my day would kill me faster than any illness.

It has been interesting to note that I'm getting better at doing nothing--or my version of nothing. I've been working on my sleep. The inability to sleep continues to make me miserable. I've been trying to be more disciplined about maintaining a routine and a set bedtime. I've been sleeping better this week, a week, I should point out, when I only had to work two days.

This morning my husband was talking to me and he said, "You look better." I was a little confused.
"Better than what?"
"Better than usual. You don't look so tired. You look more relaxed. Your color's better."

Oh. No, no, no, no. I cannot accept that a lack of rest is the thing that
is making me so unwell. I am not that person who is so delicate that she must not encounter stress.

Absolutely not. I am made of tougher stuff.

Not so much as a yawn.

Why am I always unable to sleep?

Tired most of the day, then wide awake at 3:00 in the afternoon. If I didn't take meds, I would stay up until 4:00 a.m. or so.

If I get six hours of sleep, I consider this an accomplishment.

This can't be healthy.

Obesity is going to kill us

A new report was released this week that concludes that the number one health threat to the U.S. population is obesity. Americans are getting fatter by the day, and the associated health toll is showing up in medical dollar signs.

The medical insurance companies claim they don't want to insure people who are obese. Let's face it, they don't want to insure anyone who isn't a specimen of perfect health and fitness living a risk-free life.

The thing is, my insurance company, Great West/Cigna, doesn't pay for anything except illness. The policy clearly outlines the many tools for wellness that are not covered including:
--Using the services of a dietitian or nutritionist
--Attending a university diet program (usually at a school's Center for Human --Nutrition)
--Personal trainer
--Gym membership
--Exercise education (classes)
--Fitness incentives

If you want to quit smoking, my insurance company, like so many others, will provide telephone counseling support 24/7, nicotine patches, literature, and if need be, consultations with a doctor. These tools will continue to be available over and over again, until the patient succeeds in quitting smoking or gives up trying.

My insurance will not provide any assistance toward my weight loss; however, it will pay for Lap Band surgery or traditional gastric bypass surgery, should I get to that point. In other words, if I gain another 30 pounds, I can have surgery, but at my current weight, Cigna is uninterested in my wellness.

I am not unique. The point here is that if obesity--which is expected to rise dramatically in the next few years--is such a serious and expensive health threat, wouldn't it make sense for health insurance companies to invest in just that--health?

I have taken a slightly different approach to getting what I need. For the most part, I have watched my weight spiral upward despite my many attempts to make it go the other way. I eventually stopped trying, and my weight, surprisingly, didn't change much at all. It hit a set point at 195 and seems to have found a home there.

This doesn't mean I'm content with that or resigned to it. Not at all. I recently made an appointment with a systemic wellness specialist who does a lot of endocrinology work. She's also a bariatric specialist, but I found that out after I got there.

I told her my story of frustration and fruitless attempts at getting skinny. I told her that being fit didn't matter to me. Being healthier didn't matter to me. I wanted one thing and one thing only and that was to look like an auburn-haired, purse-toting human toothpick.

She smiled. I was not the first to say this. She said something that took me by surprise. She said, "I believe you. I am sure you've tried. Before you can address the weight you're carrying, though, we need to figure out how it got there and we need to understand what your body is doing with its hormone and chemical processes. I suspect you have a lot of things out of whack, and a GP will tell you everything is normal, but as I'm scanning these lab reports you brought, I can tell you it's not."

Here's the thing. My insurance paid for this visit, but it won't pay for the nutrition plan and supplements needed to begin the repairs. Hormones, yes. Nutrition therapy, no. I'll be able to get some of that, but only because the doctor bills this kind of work as something that she knows will be covered. In other words, the only way to get it paid for is to lie.

Where I live, there is a large university with a hospital that does important research. One area they're known for is bariatric medicine. Several years ago, they launched a program to help very overweight (not morbidly obese) people reach a healthy weight through lifestyle changes, customized diet, group therapy, education, and behavior modification. The program has outrageously successful outcome statistics,but there is always a need for more participants. According to an article read, the biggest deterrent for participants is the price. No insurance company will pay for it.

I rest my case.

my moment

I'm going to be on TV Monday evening. The story will run nationally. I hope I don't come off as the total dork I am.

Later in the week, NPR. Seriously. I have faith I'll sound more intelligent in that interview.