What did we learn?

What did we learn this week?

• Don't wear socks on the hardwood floor.
• At a certain serum saturation, Lyrica + Elmiron = widespread, ugly, dusky bruises that make people gasp in horror. And possibly concern.
• Frank really does worry more about the dog, even if he won't admit it.
• My urologist and physical therapist are brilliant.
• They had coffee together this week and concluded that I am brilliant.
• Shift + enter forces a single line space in Word.
• My nerve damage cannot be cured, but it can be diminished.
• Get out of bed, head straight to the bathroom. Do not deviate from this plan.

I talk to myself anyway

The other day I was doing a Google image search for things like "puppet therapy" "puppets culture training" and "puppet learning," when I came across, well, a lot of pictures of the same damn puppets over and over. I had forgotten about the Fandango bag puppets. Funny.

I scrolled through screens and screens of images when all of a sudden, I howled with laughter. And then it wasn't funny so much as something that I felt I had to find. OK, it's still funny, but only because Frank and I are really into being the owners of a Border Collie. Not a dog--a Border Collie. Maybe we can buy extra sheep and Frank can play along.

I must have these puppets. The BC has a blue eye and a brown eye, just like Sparkle.

It would have been funny if it hadn't been me

Kegelcize. Pelvic floor muscle retraining. Bladder intuition (seriously).
I am learning the language of urology and how to connect it to my situation.

The last time I saw the urologist, I mentioned that I can't Kegel anymore. She assured me I shouldn't be concerned since this isn't a good time for me to be tightening those muscles. First we need to get them unclenched, and then we'll train them to relax or contract on command. "Besides," she said, "You've got vaginal valium going on and Baclofen and another muscle relaxer--it would be unusual if you could Kegel right now."

So good in theory.

Mornings are never my best time. I'm groggy and grouchy and I move with the grace and speed of a lurching cow. The only way I can survive the experience day in and day out is to have a structured routine. Any deviation from the plan inevitably ends up in chaos. I know this, but why do I have memory lapses? They just tilt me off balance and make me feel all in a tizzy even more than the resulting chaos. Managing BP has taught me to respect structure. It's a coping mechanism, not a lack of spontaneity. So they say.

I haven't slept well the last few nights, and it's making me less than happy to be awake in the morning. My house has hardwood floors that have a slick finish. The dog has developed arthritis, and she keeps spinning out as she tries to navigate the gorgeous and slippery red oak floors in the hallway, especially in the middle of the night when it's dark. Several times a night, I'm startled awake by the skattle-skattle-skattle of dog toenails desperately trying to get a foothold on the hardwood. Truth be told, Frank's enormous, evil cat is so fat now, that he also spins out if he goes down the hallway too fast--his balance isn't all it should be, either.

Last night was a long, jolting, dog-in-hallway night. I didn't sleep much, and I woke up late. Frank reminded me that I had left my laptop on all night and I mumbled that it was intentional, I was running a defrag on the hard drive. Frank started chattering from the kitchen that he never has to defrag his hard drive because XP is so stable, blah, blah, I shouldn't leave the computer on, vampire energy drain, blah, blah...

I walked into the dining room to check on the computer and make sure it was still alive so I could shut it down. Windows had also done an update, so there were open dialog boxes, and jee-zus, I had to pee. Just a second. This will only take a second. I actually crossed my legs like a dramatic six-year-old. I was shaking my sock-clad foot in an attempt to distract my brain from the messages being transmitted by my bladder. Just one more second...

I slid my foot back and forth on the floor. The socks are really cushy, and it feels intersting to slide my feet on the floor. Sometimes I do that Risky Business thing.

Finally, OK, computer's done. And the...I coughed. I coughed just as I've coughed thousands of times in the past few weeks. Except I leaked. My initial reaction was one of annoyance, but it was short-lived since I continued to leak. A lot. I was horrified. I crossed my legs hard at the thigh and sort of bent over, praying that Frank wouldn't walk in the room and witness my contortion.

It didn't stop and was getting worse. I needed to get to the bathroom immediately. It's at the opposite end of the house. I tried to sort of slide-shuffle toward the bathroom, still clamping my legs at the thigh, desperately trying to Kegel, to no avail.

I picked up the pace and could tell that in no uncertain terms, I was peeing my pants. I felt a warm trickle down my left leg. Having cleared the entrance to the kitchen where Frank was at the sink, I saw this as my opportunity to bolt down the hall to the bathroom, unseen. Peeing was now very much in progress. This is what I get for not going to the bathroom first. Stick to the damn routine, May. You know better.

I tried to run-hop with my legs slightly crossed and my thighs kind of wrapped around each other. I was so close, so close. I prayed I wasn't leaking onto the floor because I didn't want to explain, and I also didn't want Frank to think that Sparkle had another urinary tract infection. He would call the vet, and then I would have to make a surreptitious call later and explain it all to her.

My lurching, thudding pants-peeing, wet-pajamas-clad self barreling down the hall scared the enormous cat. He cowered and instead of running into the bedroom, panicked and ran toward me. That was the catastrophic moment. The cat got tangled in my feet, my stocking feet slid out behind me as I lunged for the bathroom door, causing me to fall, splayed flat out like a large May Voirrey trophy rug hallway runner.

The sound of my collapse was profound and the entire 1200 square feet of ranch house shuddered. The cat tore off to quieter corners, but Sparkle ran to me. She knows it's her job to help a distressed sheep. She couldn't figure out the next step, though, so she just stood there at my shoulder, panting...hhh. Hhh.Hhh.Hhh.

Frank bellowed from the kitchen. "What happened? Is the dog OK? Did the cat make her lose her footing in the hallway?" Is the dog OK? That was his first concern?

I called back that the dog was fine and the cat had actually tripped me. "Oh. Are you OK?" He still hadn't poked his head out of the kitchen, and at least I had some shred of dignity intact knowing that once assured the dog was OK, he wouldn't be checking up on the thunderous boom that had just come from the hallway.

I suppose that since the front of me was very wet, I had just, in fact, created my very own, self-contained Slip-N-Slide.

My knees hurt. I got up and hobbled into the bathroom to finish what my bladder had started. Was this going to be my future then? No ability to contract my pelvic muscles and prevent abject humiliation? Could I handle that with poise or would I have to handle it with Poise from now on? Had I just joined the ranks of middle-aged female incontinence, the stuff of daytime TV commercials?

After I showered, I discreetly rolled up my wet PJ's and put them in the wash. Trust me when I say, this is not a good way to start the morning.

I saw the urologist later today, and she explained what happened. She was very sympathetic and she told me that this probably wouldn't happen again, as long as I never let my bladder get very full. Then she jabbed me with very large needles full of nerve-numbing medication.

As soon as I got home, I headed for the bathroom, stripping off my clothes as I went. With a big sigh, I peed happily until I realized that being so numb, I couldn't tell if I had finished or not. I didn't hear anything, but had the urge passed? There was no way to tell. It was akin to getting novocain at the dentist and worrying for the next four hours if you're drooling but unaware of it.

I fear gravity now and I am afraid to drink anything or stand up. I will die of dehydration and sedentary behavior, fossilized in one dry spot on the sofa.

The intial humiliation has passed. I keep going over it in my head, and the visual of literally flying down the hallway while peeing my pants is just...funny. So I shall laugh, at least, until next time when I will weep and hide indefinitely.

Random thoughts, little wishes

I wish I had curly hair. Big, soft curls without frizz. I've wanted this most of my life. My grandmother had a talent for twisting my hair up with strips of old cotton sheets, a careful process done just before bedtime. In the morning, I had my Shirley Temple curls, if only for a day.

My hair has a natural wave, but now that I live in a high-altitude, semi-arid plain, a climate so dry parts of my body have been known to crack, curls are just out of the question. Most people with naturally curly hair just have frizz when they live here. If the dry air doesn't inhibit curl formation, the wind will whip the curl into frenzy of frizz in no time.

Deep, glossy red hair. My hair is no particular color. It changes according to the light. It's mostly a mousy ash brown that has flecks of gray in it. Given enough sun exposure, my hair gets natural highlights of blonde and red. I like red. I like red best of all, so for about 15 years, I colored my hair many different shades of red. And I permed. Alas, hair color and perms are not compatible. The color relaxes the perm and the perm strips the color. Talk about a dysfunctional relationship that has such promise on paper.

I stopped coloring my hair a few years ago. I was wildly bipolar and anything hair related was definitely not on my agenda of things to care about. My natural color hadn't changed much in all those years. There is more gray, more ash, and darker brown. In L'Oreal terms, I went from a 7.5 to a 4.0. At the depths of my bipolar suicidal despair, I dyed my hair 2.5. I looked pale and haggard and it was perfect.

It would be so wonderful to wake up with soft, auburn curls brushing my shoulders. I'm too lazy to deal with color and for quite awhile now, I've abandoned any pretense of using product, a blowdryer, rollers, flat iron, curling iron, and some days, a comb. I don't even like to wash my hair. How ironic, then, that I own enough hair styling tools and products--from mainstream to obscure--to outfit a salon. My dog's wavy auburn coat gets more style time than my head does.

Taller. Oddly, people who know me by phone are often taken aback to find out that I am short and fat in person. Countless people have said, "I pictured you as being tall with long, dark hair." Hmm. It must be something about my voice.

I wish I could turn off the anxiety generator that churns relentlessly deep in my core. It seems to me I'll never understand how to feel happy, how to embrace bliss or feel joy at all as long as that undercurrent of anxiety is always nibbling away at my confidence. It makes me driven to excel and I overachieve as a habit. No matter how real my successes, though, there is always the nagging worry that I didn't do quite as well as I could have. Surely, something had been overlooked, something hadn't been all it could have been.

A real vacation. That would be, well, I can't even think of an adjective.

Neat and tidy. What is it like to live clutter free? My father was a hoarder and I'm nowhere near that bad, but I am easily flummoxed by clutter, especially paper. I find it's easiest just to walk away until some later date. I have been steadily purging clutter for about three years, but I haven't come close to winning any battle, let alone the war.

365 sunny days a year with steady temperatures of about 83 degrees.

To know I am loved. I mean, I know Frank loves me, but that's not what I mean. Apart from him and Jolie, not even my family is very convincing on this point. Actually, they might be the least convincing.

To go through life never again saying another dorky thing.

An attention span would be really swell. I miss reading. Frank and I didn't see one movie in the past year, except for on TV. I got up, walked around, flipped through magazines, surfed the 'Net. We didn't bother to watch the Academy Awards. It seemed irrelevant, considering. It's true, though. I can't sit in a movie theater for two hours and pay attention to a movie. Me. The woman who would watch almost any movie that flickered my way. We even canceled our Netflix subscription this week. I haven't read an entire book since, well, I can't say. Years, probably.

I don't feel so bad about the Discover Card thing. Frank has been getting letters about all of his credit limits being drastically lowered. His FICO score is like, 800 something, so if he's getting these stupid letters, then I know they're being sent to everyone. I haven't been singled out.

Will reality TV ever die?

I wonder what my brain would do if I just stopped taking all eight medications abruptly and permanently. Watch for the weightloss and cue theme from Incredible Hulk.

I have every side-effect mentioned in the Lyrica TV ads.

Style note

Why do idiot fashion designers think that it is in any way appropriate to put button-down flaps on the back pockets of size 16W jeans? Are they really that clueless about what is and is not flattering--let alone what is and isn't just plain thoughtless??? Have they never seen an actual plus-size woman--from the back?

It's time

Just when I need it most: The amaryllis is in bloom. There's a second one close behind.

Sadness analyzed

I've been sad lately. Some of it is pharmaceutically induced, but most of it isn't. Usually if I make a list of what's troubling me, I can find a logical path back to normal mood management. Sometimes it doesn't work.

So, things that make me sad generally or lately:

• Loss. The trade-off of having things that matter to me, things I enjoy, taken away from my life in order to accomodate my health or behavior. This kind of compromise is no compromise at all. It's just watching pieces of my life slide away in the name of getting "better."
  
• Having Bipolar Disorder.
  
• Never getting ahead financially.
  
• Spending what money I do have on medical bills or car repairs.
  
• Winter.
  
• stories about dolphins suffering in frozen waters
  
• Animals being hurt
  
• The human cost of war
  
• My husband having no interest in the things that are most important to me
  
• My inability to connect with people
  
• Police officers who arrest--handcuffs, booking, fingerprints and all--a frightened 15-year-old African girl for shoplifting a lipstick at the supermarket.
  
• Nobody to talk to, nothing to talk about
  
• My body, my weight
  
• chronic pain
  
• Feeling so totally unloved, irrelevant, and insignificant to all but maybe two people out of 6.7 billion.
  
• My growing lack of enthusiasm for my job and the people connected to it.

Breaking up is really hard to do

Before I worked with refugees, I made my living in the corporate world. I had many job titles, but ultimately, I did one thing different ways: I was a project manager.

Project management is the perfect arrangement for people like me. I'm a little ADD. I'm easily--very easily--bored. I'm a big-picture person, the one who can truly see the vision and the outcome and then work a plan to make it all come to fruition. And then I need to move on. My passion does not thrive in long-term relationships.

Over the course of the past two months, I've been extricating myself from the nonprofit I helped to found 18 months ago. The decision breaks my heart every day, even though I feel a certain relief with each step that leads me toward the door. I am not a control freak--I'm thorough. I make lists and I love that about myself. I can convince other people to believe and to get on board. My enthusiasm is highly contagious.

I didn't think it would be so hard for me to walk away from this project. I can't even begin to think about how I will feel when I see the project going along quite well without me. It's going to be like breaking up with the love of my life and knowing that not only has he moved on, but that someone else is cooking for him now and she's using the dishes and kitchen items that I picked out.

This is a matter of health. In the long run, I risk doing permanent damage if I continue to work 80 hours a week. My body can't take it,no matter how much I try to will it to be otherwise. Letting go, on the other hand, is taking my mental health by the back of the head and repeatedly bashing it into the wall. It hurts. The loss hurts in a way I cannot articulate very well. I started the project out of love at a time when I was on very shaky ground immediately following The Big Melt. My stability was still in question, but with something tangible to grab onto, my mental health began to collect itself like spilled drops of mercury that always pull back together as long as they haven't been allowed to get too far away from the most intact piece.

My brain rerouted the scrambled neurotransmitter traffic and created something profound. It has changed lives and made a difference. It has brought communities together. I certainly didn't see that coming, but once it started happening, I did my part to keep the momentum going in its own organic way. But it's been killing me.

I understand what I need to do; that's intellectual. What I feel, though, is a loss that leaves me vacillating between sadness and resentment.

Because so much of the day-to-day management happens inside my head, and because the other members of our team have been so reluctant to take a leadership role, I hired a consultant to facilitate the transition. She's competent. She's amazing. We've worked together before, so she understands how I think, what the refugees need, the challenges of working with both, and how to structure a nascent nonprofit.

Today I participated in the second of four scheduled transition meetings. Throughout the meeting, I watched Kat work through the agenda and slowly guide the team members into articulating their vision, their worries, and the level of responsibility they are willing to accept. Kat is skilled in calming people while also helping them see what strengths and skills, exactly, they bring to the endeavor. I was there only to dump my brain and explain what I've been doing for the last year and a half.

Near the end of the meeting, the director of our partner agency poked his head in the door. He spoke with Kat directly and brought her a contract, articles of incorporation, and a request for proposal for a huge national-level grant that is coming specifically to fund this project for the next three to five years. The proposal was based almost entirely on the work I've done for the past 18 months. Still, the work goes on without me and I was not part of the grant conversation. Although it was appropriate, it was a lonely, lonely moment. Is this how parents feel when their kids move out?

Jamie and Kat have already been meeting without me--something I didn't know until today. It felt strange to learn that. Kat and I discussed weeks ago that the only way the group would move on would be if I just stopped working on the project. It's a concept that makes sense but feels more than a little uncomfortable in practice.

As I was leaving the agency's offices, I saw Kat, Jamie, and the director at the end of the hall. They were deep in conversation about future plans, potential funding streams, and a contract. Nobody noticed I was headed out the door, both physically and metaphorically.

For now, I need to get well, catch my breath, pay attention to my husband, and learn to meditate. Yeah, that's a totally thrilling replacement.

The project is in good hands, but I'm not sure I am. Once my role is over, where shall I go? What shall I do? Sigh. I'll worry about it tomorrow.

You see the world through your cynical eyes
You're a troubled young man I can tell
You've got it all in the palm of your hand
But your hand's wet with sweat and your head needs a rest

And you're fooling yourself if you don't believe it
You're kidding yourself if you don't believe it

How can you be such an angry young man
When your future looks quite bright to me
How can there be such a sinister plan
That could hide such a lamb, such a caring young man

You're fooling yourself if you don't believe it
You're kidding yourself if you don't believe it

Get up, get back on your feet
You're the one they can't beat and you know it
Come on, let's see what you've got
Just take your best shot and don't blow it

You're fooling yourself if you don't believe it
You're killing yourself if you don't believe it

Fooling Yourself (The Angry Young Man)
Tommy Shaw, Styx

I heard this song on my way to work today and found myself sitting in the parking garage with tears streaming down my face. I think it hit a nerve, no six-inch needle required. It's still some of the best synth-pop ever and one of the few things I can recall from my high school years that doesn't make me cringe. It just makes me cry, apparently.

Tastes great, too!

My name is May Voirrey and when I was diagnosed with Bipolar Disorder, I thought I was doomed to a life of lithium-induced stupidity and middle-aged onset of conservative politics. I tried fish oil capsules, but they didn't make me smarter or more flexible--they just made me burp. Now Minute Maid has come up with a beverage for people like me. Pomegranate-blueberry Enhanced Juice jump-starts my brain cells with healthy doses of Omega-3 and DHA, and the refreshing taste washes away that tongue-twisting mood stabilizer cotton mouth.

Treat your neurotransmitters to the juice made just for mood disorders and middle age. Minute Maid Enhanced Juice is so good and good for you, you'll forget it's healthy--but you won't forget to act like you're happy! Cheers!

Wedded bliss or something like it

It's been five years today that I married the only person on the planet who could possibly hang in there for the long haul. God bless Frank. And kudos to him for insisting we get married on skis on Valentine's Day. I love that wacky streak!

So the doc says, "I have good news and bad news..."

Who knew coughing could be so all-consuming? Maybe that's partly how TB came to be called consumption.

I am a spectacular cougher. Last night, I barely slept. Oh, how I wanted to drift off to dreamland. The coughing shook the entire bed and sounded like someone was shredding large sheets of fabric in the night. I slept fitfully, coughed a lot, slept a little, coughed a lot more...At 3:00, I got up and moved to the living room sofa. Sometimes a change of scenery makes all the difference.

I fell asleep and stayed asleep until my sleep was inexplicably taken from me. I heard Frank's voice invade my dream.
"May?"
mumblegrunt
"It's five-fifteen. I'm going to be making a lot of noise now."
'kay (I try to remain in my foggy quasi-sleep, knowing it will prevent the homicidal urge attempting to move into the front of my consciousness)
"hhhhh. hhhhh. slrrp. hhhh. slurrrp. hhhhh."
"Hey, Sparkle. [evil, dogicidal thoughts] Good girl. Thanks for the kisses. Go away."

Do they work as a friggin' happy morning, misguided, well-intentioned tag team?

Ten minutes later, Frank comes back and says, "Did you get some sleep?" How to answer? I don't remember what I said, but it probably was neither polite nor intelligible. I got up and stumbled back into the bedroom where instead of maintaining my still-near-unconciousness, I immediately had to prevent Frank's bad kitty from attacking my sweet kitty, who just wanted to lick me into calm and peaceful sleep.

I slept, but not all that peacefully.

Later, the phone rang. It was the always-perky Amy from the doctor's office. "Well, May, there's no indication of pneumonia or TB!" (TB?)
"Oh, that's gr--"
"...but there is something."
"What do you mean, 'something?'"
"There's a spot and a shadow on your lung. The radiologist has asked that you come back in for a CT scan with contrast. Have you ever had a CT scan?"
"As a matter of fact, yes. A few weeks ago. The most expensive 10 minutes of my life."
Perky Amy tells me that's good--I already understand the process! I asked her if she could tell me where this shadowy spot is, and she chirped, "Oh, gosh, I'm so bad at reading these things. I don't know if it's the right lung or the right side of the left lung. Or the right side of the right lung. They'll scan your whole chest, though."

Yipee.

Did I mention the other CT scan showed I have a cyst on my liver? It's probably nothing, just as the spotty shadow on my lung will turn out to be nothing...except expensive.

I really hope next week is better.

what a day

I'm too tired to write about it. Here it is in pictures. Use your imagination.

9:00 a.m.

12:00 noon

12:45 p.m.

1:00 p.m.

1:30 p.m.

2:15 p.m.

3:00 p.m.

3:45 p.m.

4:30 p.m.

4:50 p.m.

6:00 p.m.

Hack, gag, wheeze,

I have the flu.

Water will wash away the cough

Sometime between November and late April, a rib-cracking cough will track me down and shake me senseless for weeks. This is not an exaggeration. There are some things I do exceptionally well, snot and coughs being among them.

We have five vaporizers in our house. All are functional and all get used. There is a box of Kleenex in every room. We regularly stock packages of tea with names like Breathwell, Throat Soother, and Herba Tussin. I believe in the restorative power of Vick's VapoRub and Halls lozenges.

I have had pneumonia four times and bronchitis more times than I can remember. In my 30s, I acquired asthma, although I tend to ignore it unless I start to sound like a creaky sofa when I breathe.

At the moment, I'm getting creaky and I've started coughing. It's not the barky cough of bronchitis, nor is it the gravelly cough of pneumonia. This is more like a smoker's cough. My husband is sure I'm going to hack up a lung. I told him not to worry--it's just TB. He he. Um, he missed the joke since I spend quality time nearly everyday with people being treated for TB. I have much more faith in the public health system than he does.

I told him that I'm fine. I will be, as long as I don't get bronchitis. Here's the thing. If you look at any cough medicine or decongestant, there is a warning that says you can't take it if you also take an MAOI. That never meant anything to me before, but a rather large dose of an MAOI makes its way through my system on a daily basis. Prevention is key, and water is my solution.

I have assembled my water-based defense arsenal. For those who prefer home remedies, water has a lot going for it. Here's what I know for sure:



Hot tea. The liquid keeps your bodily fluids flowing and the heat opens your sinuses and dilates the pathways in your lungs. Ahhh!






A vaporizer is a must. You don't need the menthol stuff that adds aroma to the steam. Plug in the vaporizer at night, and let the warm mist crack open the crap in your chest faster than a crowbar. Low-tech. Effective.



The neti pot used to be for hippies, granola heads, and Ayurvedic yogis, but then came Oprah. Once the neti pot was hyped on Oprah, it went mainstream (no pun intended). I've been using one for years. You pour warm saline solution up one nostril and after you gag for a few seconds, the water exits via the other nostril. There's a lot of coughing up phlegm and nose blowing, but once you've experienced nasal hygiene like this, you'll wonder if the Kleenex people plotted to hide this ancient therapy in the interest of cornering the snot market.

Hot showers are soothing, sure, but it's the bulk steam that does the real work. As your muscles relax, you allow more air into your lungs. Sinuses open, and steam fills your lungs. This loosens mucous and moisturizes the bronchial pathways. That makes it easier to get the crap out without having to deal with that blobby green guy in the Mucinex commercials.

Today I'm trying something new. It's a ceramic pod called a Himalayan Salt Inhaler for Wellness. It contains 250-million-year-old salt harvested from the Himalayas. It seems that this salt is more therapeutic than the French sea salt I use for cooking or the Mortons we use for all other salt applications. Apparently, only 250-million-year-old salt will do if you're going to treat your respiratory misfortune with salt air. So much for a trip to the Coast.

I will be very disappointed if I do, in fact, hack up a lung.

A biology lesson

OK, just to clarify: A man with a uterus, ovaries and abundant female hormones is not a man. That's a woman with a partial sex change.

There is nothing special or biologically exceptional about this person. Stop the presses and the Press. Please. Enough already. She is what she was to begin with.

Ommmm my god, this is boring

Dr. G., my doctor, not the Orlando medical examiner, believes that my body is in a state of neural windup. I already knew this, I just didn't realize it had a name.

Central nervous system windup occurs when nerve damage combines with external stressors (good old-fashioned stress), keeping the nervous system in a hyperstimulated state. After reading about this, I've learned a lot about the central, peripheral, autonomic, and sympathetic nervous systems. They chat a lot amongst themselves and they are prone to spreading false information and then acting on it. Sort of like the people who forward urban legend emails before they've checked out whether the story is actually true. The more wrong information they send, the more overstimulated the nerve impulses become.

My bipolar disorder has been part of this campaign of neural excitability, simply because its etiology is deep inside the central nervous system. The knee bone's connected to the thigh bone...Dem bones are OK, but the nerves are running amok. My mood is caught in the crossfire. At least I'm aware enough to know where the BP flare-up is coming from.

Medications aren't helping much. The BP ones are hanging on, but the things that have been prescribed to reign in the nervous system's firestorm aren't very effective at all. The problem is stress. The stress is aggravated by a brain that can't slow down and hasn't been processing electrical signals correctly for quite some time now. The production of mast cells could very well make the pain permanent. The question, then, is: How do you slow down a brain that can't differentiate between alarming news and normal sensory input?

The answer is: Meditation. Mindfulness. Breathing. Quiet centerdness. Shinzen Young.

Shinzen Young is a meditation master who also happens to have done a lot of work in the area of psychologically based pain management (He is not Asian but might want to be). The idea is to become aware of the pain in a more conscious way and then learn to acknowledge the body in order to talk it down off of the precarious nervous-system window ledge.

Whether my mind goes to my happy place, my safe place, or no place in particular, I am skeptical that examining my pain will make it go away. Stopping over at PsychCentral, my research turned up this information:

One way to practice mindfulness is to use the breath as an object of awareness. You can place attention at the tip of the nose or the belly and as you breathe in, just acknowledge the breath coming in and as you breathing out just acknowledge the breathe going out. As if you were greeting and saying goodbye to an old friend. When the mind wanders, as it will always do, just say to yourself “wandering” and then gently bring your attention back to the breath just noticing it coming in and going out. Most of us catch the mind wandering and gently bring it back billions of times, so know that it is normal for the mind to wander often. You can do this for as little as 1 minute or as much as 30 minutes or more.

I am a loud breather. It distracts me when I use my iPod. My nose is in a permanent state of quasi-congestion and inflammation, bot of which are exacerbated by the dry climate here. I was encouraged by PsychCentral's assurance that we all have wandering minds to rein in, so I bought the Shinzen Young book, the CDs, and the companion materials. I read, I studied, and I set about centering myself in search of serenity. I learned something:

I am a failure at meditation. My mind can't focus on only one thing nor can it find a mantra that doesn't eventually sound idiotic. As I sit in a state of pseudo-calm and concentration, I find my mind sneaking off to make a little to-do list on the side. Or to design a piece of jewelry. Or to solve a household problem...I can't sit still. It feels like time leaking down the cosmic drain. I have things to do. No, May, this is your thing. Sit still. Be.

I... am. I am falling asleep. I am bored. I am obviously missing the point. How do people do this and find therapeutic value? It seems like a bit of a scam. I know this is supposed to help me, but no matter how hard I try to embrace the Zen, I always find I'd rather be doing something else.

Meditation bores the crap out of me. Perhaps a nice Mai Tai on a tropical beach would sooth my nerves...

ॐ

Adrift in a sea of cynicism

The other night I was up late and I took a trip over to Bipolar Beat, a blog about, well, you know. It's published by two specialists in the field, and at least one of them has BP. I came across a post called 10 BP Self-Help Tips. At this point, I've pretty much got this one down, and I continue to demonstrate exemplary compliance so no one can ever say I didn't give it my all. You know, in case I'm involved in a scandalous exposé, and the first thing in the news story will be: She was mentally ill and although this had nothing to do with why she was knowingly comingling her recycling and her regular garbage, it makes this story much more compelling!

I read the list and it got to a point where it physically hurt to keep going. What I read was my life as a compliant patient, but I didn't feel exactly validated. I was doing everything right and I had been since the beginning, but doing those things made life better for the people around me. My stability had benefits for me, but getting there was a trip down a very long trail of loss, sadness, and resentment. It reminded me that when life was nearly unbearable, I was the one who was expected to do the heavy lifting in terms of getting well. There was no outstretched hand offering me help or hope. there was little tolerance for the manifestation of my illness, almost no compassion, and little if any appreciation for what achieving stability entails.

I posted a response to the post in my moment of frustration. It wasn't very well received. It was my version of the list:

1. Stay home.

2. Lay low.

3. Give up everything that ever made you feel happy.

4. Kiss your really big dreams goodbye and work on acceptance.

5. Sleep, but not too much or too little. If your sleep continues to be a problem, well, try harder.

6. Learn to embrace structure, even if it feels claustrophobic.

7. Engage in only those behaviors that ensure other people won’t feel uncomfortable around you.

8. Read everything, believe some of it, and share what you’re learning if you want to, but know that the people in your life have no plans to put in much effort themselves to understand the things they demand that you understand.

9. The people who know you don’t really want to help you get well; they just want you to act normal again

10. Exercise. Don’t exercise. It doesn’t help much either way, and the drugs will make you gain weight regardless.

11. Keep your doctor appointments. Those quarterly 15-minute medication reviews are just so critical to your success.

12. Understand that your therapist only cares if your check clears. You can’t buy sincerity and compassion.

13. If your credibility is something that matters to you, for the love of god, DO NOT tell anyone what your diagnosis is.

14. Be a friend to yourself. You may well be the only one willing to stick around during the bumpy parts.

I have been diligent about doing everything I’m supposed to. I admit that this has brought stability to my BP, but at a very high cost. The discipline required to stay on track can be oppressive.

Meet Frank

For well over 18 months, whenever I write in this blog, I've been referring to my husband as "my husband." He always made it clear that I was not to refer to him by his given name.

For all this time, I've offered options: Binky, Bob, Tom, John, Lester, Bunny, Wilbur, Elmo, Buster, Jimmy, Barack, Manny, Moe, and many others. He would have none of it

A week or so ago, I asked again because sometimes his given name of "my husband" doesn't flow in my writing. He thought for a second, looked up to the ceiling and said, "Saint Francis." I rolled my eyes and pointed out that his choice was no easier to type than what I had been using.

He thought about that and said, "Well, I'm from Joisey, I'm mostly Italian, and my parents came from Brooklyn, so just call me 'Frank.'"

I told him that I was pretty sure that most people don't consider Princeton to be "Joisey," but he doesn't want me to divulge his home town, so, well, forget what I just said.

Frank, it is. He is an animal lover and a truly kind soul who tries to help all living things. He often puts our pets' comfort ahead of his own and is surprised I won't do the same. Case in point: Here are pictures of Frank cooking breakfast today. God forbid he should tell the dog to move. Frank was there first and the dog just felt lonely, I guess.

Like Violet Beauregarde, but not blue

Body image. Health. Weight. Fitness. BMI. Body type. Obesity. Dreams. Reality. Effort. Blame. Failure.

This is the vocabulary of my daily life. There are certainly parts of my life that don't make me cringe, but how I look and what I have become are always within two or three thought-layers of my consciousness. That is all day, every day, regardless of how critical the focus of the top layer of conscious thought. Are my priorities misplaced? Probably not. My insecurities don't prevent me from meeting any obligations, nor do I neglect any personal or professional responsibilities. I just feel bad as I carry out the duties of my life.

May day, May day. May is in distress. Muscle relaxers seem to trigger depression and amplified self-loathing. Without them, though, I'm a noncompliant patient and I don't want to disappoint the doctors who are cashing in on the puzzling battle with my chronic pain.

The Internet is crammed with information about body size, health, ideal weight, and all sorts of calculators. I stick to the credible, vetted sites for my health information. Knowing that the information is correct often makes me feel even worse about the answers I find.

I weighed myself this week. Generally, I don't weigh myself anymore because the experience usually leaves me in a deep, dark, terrible mood. When my husband hears me moving the scale into position, he'll call out, "Don't do it! It never ends well and you'll just end up miserable!!"

He's right, of course, but about once a month (usually less), I want to know just how much I should hate myself.

According to the government's health information, my body's frame is on the border of small and medium. Parts of me are very skinny--my ankles, wrists and fingers. Even at my all-time heaviest (now), my wedding rings spin around on my finger. The rings are size 5.75.

Small-to-medium frame. Five feet, two inches (almost). As of this week, 190.2 pounds.

Just fucking shoot me now. Please.

My husband (we're calling him Frank for blogging purposes) was shocked by this news. He said, "May, there is no way. You do not look like you weigh 190 pounds." Thank you, Mr. 152.

Don't ask me why, but I own three scales and all gave me the same number. According to the scale in the doctor's office, I weigh 195. I almost threw up. It was touch-and-go there for a few minutes. When I weighed myself at home a couple of weeks later, I did not speak for almost two hours. I barely spoke for two days. I am so shallow that this weight revelation started me considering the value of staying alive.

I know how to eat. In fact, I can spout off calorie counts for most foods, along with fat content and fiber, and in many cases, where they rank on the glycemic index. I am an expert on food and diet and I choose my foods accordingly. It bears mentioning that I do not enjoy eating. There is not one thing that goes into my mouth without guilt and excruciating analysis. My conclusion is always the same: "May, you do not deserve to eat this food. You did not earn it."

Anyone who spends time with me will tell you one of two things about me and food: I don't overeat and I don't eat crap. OK, I do eat dessert every day. It's the only thing that brings some happiness to my warped world of food. Dessert might be half of a chocolate bar, or a small dish of low-fat ice cream, or two cookies (not three). There was a time in my life when I ate the whole damn pint of Ben & Jerry's Chunky Monkey, and weighed almost 50 pounds less than I do now.

When I was enrolled in the exercise research study last year, the lead researcher did a battery of metabolic measurement tests. The results were so extremely astounding, he did them twice. He said that in all of his many years of doing this work, he had never met anyone with a metabolism as efficient as mine. As in slow. He said it was akin to someone who was starving in the Kalahari.

No matter how little I've eaten or how much I've exercised (obsessively at times), I've never been thin. Had I known that all of that dieting and exercise would eventually be completely meaningless, I would have loosened up a bit.

On the upside, my blood pressure is low, my cholesterol is essentially fine, my blood sugar is normal, my thyroid is functioning, my resting heart rate is about 60, and my recovery heart rate is good. I had a DEXA scan bone density test several years ago and was told I had such dense bone structure, there was virtually no chance I would get osteoporosis--ever. According to the NIH calculators, my odds of getting breast cancer are less than one-half of one percent, and my risk of getting heart disease in the next 10-15 years is less than one percent. So, I'm healthy, although any doctor will dispute that this is even possible for someone with a BMI of 35.3. I would like to see that BMI come down to between 18.5 and 19, possibly a bit less.

Here is what the primary care doctors have always missed with me: I couldn't care less about being a healthy weight. It's all about looks. People like us when we're skinny. It brings praise and approval and is perceived as a positive indication of self-discipline and self-control.

If I gain another 25 pounds, I qualify for gastric bypass surgery. At this point, I would settle for being able to keep my daily calorie intake at between 700-900 calories per day. That's half of what I consume now. It's not a discipline problem, it's a more biological issue. I get hungry. I become nauseated. My many medications churn up a plethora of unpleasant side-effects when I don't eat.

My well-documented and scrutinized past tells me hours of daily exercise probably won't make a dent. It will only make me dizzy-headed with hunger.

I feel so bad today. Sad, anxious, ugly, embarrassed, defeated, and depressed. I am tired of feeling this way and of being broke, obese, sick, in pain, lonely, and in a constant medication fog.

I'm still not clear on what part of this is worth living for. At all. The nature of hope comes from an innate belief that change is not only possible, but probable. I don't see those possibilities right now.

Bodies I admire:
Kelly Ripa in those Electrolux appliance commercials
Keira Knightly
Sarah Jessica Parker
Victoria Beckham
Angelina Jolie
Eva Longoria
Kristin Chenoweth