The irony is almost too much

I almost never carry cash. My ability to keep track of my spending is almost nonexistent. This type of information rolls around in my head before dispersing like loose change hitting the sidewalk. Checks are not especially user-friendly when shopping, so I have come to depend on my VISA debit card.

My checkbook has self-carbon-copying checks which makes tracking my use of them quite easy. The debit card has no such built-in safeguard. Still, I check my account online frequently, and that keeps me from being a remedial banking customer. Usually.

Yesterday, I logged onto my account only to see a financial disaster of tremendous proportions stemming from a $1.61 overdraft that somehow resulted in $200 in fees. I'm not always adept at managing my finances, but I'm no moron, either. The credit union had some explaining to do. In the midst of a very tedious and strained conversation with two people at the bank, I saw a charge from a gun company showing on my account summary. A gun company? The bank lady said there were actually four attempted transactions from my card in the past two hours, but since I was overdrawn, they had been declined.

Someone stole my VISA debit information thinking they were going on a shopping spree, when, in fact, INSTANT KARMA! They stole the information for an account with absolutely no money in it! How fabulously ironic.

I need to find out who would have done such a thing and if I do, I'm gonna kick his ass.

Life feels burdensome lately.

Pearls o' wisdom

From my Life's Little Instruction Calendar Volume XIV, 5/20 and 5/22

Don't share your misery. People have enough of their own.

When you are in trouble, a true friend calls you.

Obviously, I am not alone in my thinking. Maybe I could put together a calendar for the Page-A-Day company: May's 365 Days of Cynical (But You Know I'm Right) Wisdom 2010

Not listening

There was no Kumbayah. There was no preaching. There were plenty of things I didn't want to hear, and quite a bit that went into my ears and hit such strong resistance it flew back out, rejected.

Acceptance and commitment. Stop fighting your body. Your body is trying to tell you something. You cannot disassociate from your pain forever, nor can you ignore the symptoms. It is not a mind versus body issue, it is mindbody health. When you get angry at your illness, when you keep pushing through, you deplete your resources exponentially. Toxic thinking, toxic body. You need to slow down. Learn to relax. Think. Make "don't do" lists. Try yoga. Breathe deeply. Examine what it is that causes your flares. Tune in to your body. Do less. The world will not end.

Sure. No problem. I'll also try not to think about how I'm going to pay my piles of bills.

I do not accept my illnesses. I do not accept that it is OK to use illness as an excuse for rearranging an entire life when there is no threat of death involved. I do not accept that self-love is the key to health. I do not accept that my hard work and need to achieve are in any way harmful to me.

I'm not a heroin addict, I eat a healthy, balanced, low-fat diet, my sleep sucks but that's going to be true no matter what, I barely drink alcohol, I drive carefully and use a seatbelt, I floss, and I take the stairs. My health is tended to adequately.

I do not accept my illnesses. Acceptance is resignation. I am not resigned to accepting any of it, not bipolar fucking disorder, not fucking chronic pain. Medical science needs to work with me on this one because I am not going to accommodate the problem.

EfffffffffT

Emotional Freedom Technique.

Dr. G is really getting into this mind-body connection. She knows I'm skeptical, so she's quick to explain the scientifics behind her treatment suggestions. The whole New Age school of healing is lost on me still. I am a woman of science, of clinical trials, experiments, studies, and data.

EFT involves a lot of tapping. There is tapping around the eyes, on the hand, and maybe a shuffle off to Buffalo. Tap tap, tappity tap tap.

Supposedly, the tapping follows a prescribed sequence and it plays on the so-called energy fields of the body. Several research studies (love those) using the scientific method have shown that the tapping is nothing more than a distraction meant to take one's attention away from the pain, thereby lessening it. I believe this is what my mother has always referred to as, "Don't think about it and it won't bother you so much." She never depended on university studies to prescribe this particular course of action, and its effectiveness goes without saying (because there's nothing to say).

Affirmations. Yes, my favorite. For the most part, I believe that affirmations are a sanctioned way to lie to oneself when we feel most unsure of the legitimacy of what we're saying. Stuart Smalley comes to mind with his in-the-mirror stress reliever, "I'm good enough, I'm smart enough, and darn it, people like me." Then again, Al Franken is going to Washington. Eventually.

Ugly Betty chants her mantra just before she bashes her body into a glass conference room wall, "I am a smart, capable business woman."

During the tapping upon my previously-mentioned places, I am to announce the word "pain" with each tap, and then near the end of the sequence say, "Even though I have this neuralgia, I deeply and completely accept myself." Even under the best of circumstances, it's just not true and I am too smart to convince myself otherwise, especially in the absence of proof. This reminds me of the Henny Youngman joke about the guy who goes to the doctor with a broken arm he asks the doctor if he'll ever play the violin and the doctor assures him he will. Upon hearing this, the patient exclaims, "That's great news because I couldn't play before!"

So, is this a two-for-one special treatment wherein I feel less pain and gain self-esteem?

When Dr. G opted to go with this technique instead of nerve blocks last week, I must say, I felt completely ridiculous. Granted, I felt less pain, but I'm pretty sure that was because I didn't have large needles stuck into my pudendal nerve and I skipped physical therapy last week, as well.

I'm sure this skepticism and negativity will all fall away tomorrow night when I attend doctor-prescribed group orientation with a therapist who specializes in chronic pain and "acceptance and commitment therapy."

If this involves even one visualization or affirmation, I'm leaving.

I feel misunderstood, but I sensed it was coming because I was space restricted in articulating everything. I'm too complex for the chosen venue. Click here to see what I mean.

Street oddities

Having spent so much of my life on the East Coast and in places like New York, Philly, and DC, I became skeptical about and virtually immune to panhandlers. There are the contrived hard-luck stories, the dreadlocked 20-year-olds who seem to ask for money just because they feel like it, there are the schizophrenics, the addicted, and the buskers. They all operate differently, but ultimately, they're all after the same thing: Money that might be there for the asking.

In a moment of uncharacteristic snarkiness on a very BP day, I snapped at a seemingly healthy 30-ish man, "I worked really hard for my money this week and I earned it. What did you do to earn it?" He looked at me and said (with his own snarky tone), "Never mind, sweetheart."

When I moved further west to a much smaller city, I expected the panhandling situation to be different. In some ways it is, and in some ways it isn't. There are the usual stereotypes and a few I hadn't met until I got here. There's the bleach lady who stands on a corner near my house every day, no matter what the weather. Her clothes are streaked with bleach stains and she wears bright yellow household gloves all the time. When people give her money, she takes it in a container, never actually touching it--as if the germs will permeate the latex gloves. Her cardboard sign reads simply, "Wishing for chicken."

One afternoon on my way back to the office after a haircut, a young woman hanging out on the corner spun around and jumped in front of me. She got up in my face and snarled through gritted teeth, "I'm gonna kick your fat fuckin' ass." I just looked at her and kept going, although I was scared she was going to make good on the threat. The crank bug gouges on her face were fresh, she was pale and thin, and her eyes were dark rimmed. A male friend of hers standing nearby apologized and said, "She's not herself. She needs to eat. Could you spare some change?" I assured him I had none to spare for her.

For the most part, panhandlers here are not aggressive and they'll give a "Thanks anyway, God bless" as they walk away. When one of the homeless people passes out along the bike path, someone passing by will always be sure to call an ambulance. This city is like that. Still, I maintain my resolve and I don't feed the problem, instead donating to local agencies that help those facing life challenges.

Usually, I don't feel bad about it. Usually.

Today was not a usually day. It was about 4:00 and everyone had gone home from work, getting an early start on the long weekend. I was parked on the street, loading some things into my car when a slight man in his twenties approached me. He looked tidy enough, clean-cut, but sad. He looked really sad and tired. His voice shook when he talked to me. "Excuse me, ma'am, uh, um, would you happen to have any money you could spare? I, uh, recently suffered a bad burn, and I can't work. I need $12 to keep my motel room for the night."

As he spoke to me, he removed a tattered green T-shirt that had been folded over his arm. The sight that was revealed was horrific. A large chunk of the outer side of his forearm was missing between the wrist and the elbow. The damaged area was easily at least three inches wide and six inches long. Small black scabs peppered the area around the wound. The wound itself was not only huge, but gaping, as if skin and muscle has been gouged or scooped out nearly to the bone. There was no skin and no identifiable muscle, only a yellow waxiness surrounded by an angry red rim. I have never seen anything like it.

My heart sank. I apologized. I called him "sweetie." I explained that I had absolutely no cash with me, and the last of my change had gone into the parking meter. My excuses probably sounded hollow, but they had never been so sincere. I wanted to help, I really did, but I didn't have the means right then. I watched him continue up the street, walking slowly with his head down.

On the way home, I couldn't get the sight of that injury out of my head. I was angry that the city hospital had let him go in that condition. In this state, hospitals are not required to provide indigent care. The city hospital does, but once a patient's life is not in danger, he or she is immediately released. I learned this when the friend of a coworker fell off of a ladder and broke both legs. He was unemployed and had no insurance. In the ER, he was told that he needed surgery on both legs or he would lose his mobility forever, but, since the injury wasn't life-threatening, the city hospital had fulfilled its obligation and he was released an hour later. It took four days of phone calls and begging before he found a hospital to perform the surgery for a minimal fee.

I thought about the young man in the red T-shirt and I was filled with frustration. I had passed my bank earlier in the day and I thought about stopping at the ATM, but decided I felt too darn lazy to park the car and wait in line. How I wished I hadn't been so quick to indulge my lack of patience.

I hope he's OK, but I sense that without proper care and a lot of physical therapy, this man's swollen arm will never function properly again. Had there been cash in my purse, I would have given him the money for the next few nights of motel rent. Hell, I would have--should have--given him the first aid kit from my office. It is well-stocked and has generous amounts of dressings, antibacterial ointments, burn cream, sterile saline solution, and more. I thought about the Zim's Wound Care sitting unused back at home. This guy definitely could have used the outrageously expensive tube of stinky, sticky, surgical-grade collagen goo that had healed an acid burn on my thigh as if it had never happened.

With any luck, he eventually found someone like me, but who actually had cash on hand. Here's hoping for luck and goodwill.

The divergence of medical philosphy

What do you want from your medical treatment, May? What are your expectations? How might those expectations frustrate you?
I asked myself these questions as I hurried my way along the city sidewalk on the way to see Dr. G. The puzzle, it seemed to me, wasn’t that I'm not getting better, but that treatment for chronic illness isn't aimed at finding answers--it is goal oriented toward disease management.

Management implies that any treatment will always be only temporary. Stop treating, resume illness. This is not my goal--my goal has always been wellness, and to me, wellness means the absence of illness.

When I was first diagnosed with BP, I asked the doctor what we would have to do to make it go away. He said it was never going to go away and that, in fact, it could get worse, or better, or stay the same regardless of treatment. A multi-pronged approach was recommended to improve the chances of a better outcome. Although I have followed most of my treatment protocol to the letter, there are some things I have been unwilling to do.

If you have BP, you are encouraged to keep a sleep schedule, encouraged to get some exercise, encouraged to take medication, and encouraged to avoid caffeine and junk food. You are told that you must watch your stress. BP isn't fatal, but you sure can become annoying if you get stressed out and your mind stops playing nice with others. You need to manage stress, but you don't need to change much else in your day-to-day life unless you find that it exacerbated the illness.

I have always approached BP as a collection of challenges I need to overcome, not manage. This has always been and continues to be my goal. I swallow the pills, slap on the patch, and remain vigilant for impending mood changes. I have always done this with the intention of being the me I always was--so I could get my life back, not so I could start over with a different life.

This is the way I view illness and wellness: When you are unwell, you seek treatment that will rehabilitate you to the point where you can get back to doing what you were doing before you got sick. The goal is to get back on track--it is not to change trains altogether.

I have been down this path with BP and now I am back with the chronic pain issue. This time, I am once again being told to stop what I'm doing and do something different. It's for my own good. And this is what is at the heart of the philosophical problem.

Nervous-system-based illness is not life-threatening. It is unpredictable and it is painful, but mostly it is disruptive to a productive life. This type of illness is treated with medicine, complementary therapies, and attention to lifestyle. When I was diagnosed with BP, I was told that if I didn't change my life by ratcheting down a few notches, I would suffer dire consequences. I am being told this once again.

I'm willing to take the medication, to get stuck with needles, endure invasive physical therapy, try meditation, yoga, and so-help-me-god recite affirmations, but I am doing this so I can live life, my life. I don't want to give up my work or the other things that have meaning.

And therein lies the rub. I believe that medical treatment should be approached with the goal of restorative therapy--getting the patient back to where he or she was before illness interfered. Modern medicine assumes the patient will change and adapt to the treatment.

I want treatment to accommodate the parts of my life that are valuable to me. I do not want to stop living my life in order to accommodate the illness.

There has to be some middle ground. Otherwise, I prefer to be dead at 53 having lived my life fully rather than still be here at 65 because I obediently sat on the sidelines watching life pass me by.

Say what?

I am starting to once again speak first and generally not give it any thought later. I am beginning to lose my diligent monitoring. My brain is not filtering before thoughts become words that leave my mouth.

This is not a good sign, no, no, no.

This particular behavior means that I am about to have a swing across the mood spectrum that looks like Tarzan traveling on a vine.

The thing is, I really feel too exhausted to put the effort required into stopping it before it escalates. On the plus side, I'm much funnier and honest when the tact filter is removed. At least, until I become just plain sharp-tongued and bitchy. It's a fine line, really.

If I could just resist the compulsion to speak at all.

Post 425 wherein May whines, laments, rails, and wallows in self-pity

A couple of days ago, I sent out an email to my family and my few friends (sorry, Laurel, I realized it after I turned off the laptop), plus the women who work on the nonprofit with me. Following my pathetic message to them, I have included my response to Jolie's message of support and concern to me. It's all from unfiltered emotion, and I'll need to remember that when I read this in the future.

I know I keep complaining about how awful I feel, and I keep trying to find a simple answer when you all ask me, "Now, what is this problem again?" It's very complicated, but with some help from online sources, I think I have an easy-to-follow summary. Not only is my problem (syndrome, actually) hard to nail down, it's getting worse, spreading, and stealing what little sleep I was getting. At this moment, I would swear I have shingles again. I must admit, I am emotionally and physically exhausted from feeling beyond awful. You just have no idea. Now, before you roll your eyes and accuse me of being weak , or a whiner, or dramatic, or looking for attention, or a big baby, or a "whatever, just deal with it, May," imagine if the information below was the best that the very best doctors could come up with for you. (and you know I did my research on that!).

We live in a culture that not only values bearing illness without complaint, it's an expectation. I've been trying not to talk about it, but geez, this is wearing me down. I keep joking that I need morphine or some other narcotic, but the truth is, other than knocking me out, it wouldn't help. I'm so frustrated and discouraged. WOULD SOMEONE PLEASE JUST SHOOT ME AND PUT ME OUT OF THIS MISERY? OK, that's all. I promise I'll stop whining now! Just bear with me if I'm particularly grumpy these days.

Neuropathic pain is pain produced by a change in neurological structure or function. (The brain "software" gets rewritten.) By understanding the neuroplastic changes following nerve damage, researchers may be able to better understand the mechanism of hyperexcitability in the nervous system that is believed to cause neuropathic pain.

Neuralgia falls into two categories: central neuralgia and peripheral neuralgia (I have both). This unusual pain is thought to be linked to four possible mechanisms: ion gate malfunctions; the nerve becomes mechanically sensitive and creates an ectopic signal; cross signals between large and small fibers; and malfunction due to damage in the central processor. It is also known as “Complex Regional Pain Syndrome Type 1 and Type 2” (CRPS). CRPS Type 1 describes the condition when no clear nerve injury is present, and Type 2 describes a case when nerve damage is clear (again, I have both).

Neuralgia is a form of chronic pain and can be extremely difficult to diagnose. Postherpetic neuralgia (from shingles) is the easiest to diagnose because it follows an obvious cause. Neuralgia is a rare disease (of course it is). Women are more likely to be affected than men, and those over 50 are at the greatest risk. In some cases, multiple sclerosis is related to nerve damage, causing the pain, so doctors will likely ask about family history to help diagnose (I definitely do not have this, but I do take an MS medication). Nothing unusual can be seen in brain scans, so diagnosis is usually based on the description of the symptoms and the response to the medication or procedures.

Neuralgia is not only difficult to diagnose, but most treatments show little or no effectiveness. Treatment options include medicines, surgery, and complementary approaches. Diagnosis typically involves locating the damaged nerve by identifying missing sensory or motor function. Neuralgia is more difficult to treat than other types of pain because it does not respond well to normal pain medications. Special medications have become more specific to neuralgia and typically fall under the category of membrane stabilizing drugs or antidepressants. The antiepileptic medication Lyrica was developed specifically for neuralgia and other neuropathic pain.

High doses of anticonvulsant medicines—used to block nerve firing— and tricyclic antidepressants are generally effective in treating neuralgia. If medication fails to relieve pain or produces intolerable side effects, surgical treatment may be recommended.

Some patients choose to manage neuralgia using complementary techniques, usually in combination with drug treatment. These therapies offer varying degrees of success. Options include acupuncture (or dry needling), biofeedback, vitamin therapy, nutritional therapy, hot-cold compress, and electrical stimulation of the nerves. (I've tried the best of these, but none of these things are working for me so far. I also get two nerve block injections every two weeks.)

Sleep deprivation has also been reported as a byproduct of the pain. It is possible that there are other triggers or aggravating factors that patients need to learn to recognize to help manage their health. Bright lights, sounds, overstimulation, too much physical effort, and stress are examples of additional stimuli that can contribute to the condition.

The pain can cause nausea, so beyond the obvious need to treat the pain, it is important to be sure to try to get adequate rest and nutrition (nausea is an understatement).

Sigh. Any thoughts or suggestions? I'm so...sad. I really am seeing the best doctors in the field. I must have been just evil in a former life.

Part II

I know it's trite to use the term "unfair" in situations like this, but I do think it's some sort of cosmic mistake that after surviving the last five years and my nearly fatal struggle to make it through BP Hell, that I should then get slammed with something equally hard to manage--let alone accept.

When Dr. G, Dr. Pain, and Toni the PT kept pushing for me to join the support group, I thought, I'm doing really well on my own. I don't need to talk about my pain. I've already researched the treatment options. I don't need to compare notes.

It wasn't until I met with the group and the pain specialist that it started to dawn on me: We're all screwed and the docs want us to be part of this support group so we can navigate the Kubler-Ross paradigm together.

I still think it is unfair for me to have been cursed with bipolar disorder and all it has cost me along with the toll it continues to take. It took me a few years to bring my rage and resentment to manageable levels emotionally, and it seems that just as I was emerging from that crucible (transformed, really), this new affliction became apparent, although it was there to some degree all along.

I am angry and sad and frustrated and feeling the rage of injustice. I have met the enemy and the enemy is incurable chronic illness. Two of them. Bad ones. Torturous, complex, life-changing, soul-piercing illnesses that nobody wants to know about. The ultimate joke on me is that not only don't I look sick at all, these horrible, wholly brain-based illnesses are not fatal. They are debilitating and extremely difficult to have, but they are, supposedly, manageable. Of course, that is if I do everything according to plan and I live my life around disease management. But then again, that might not work after all, and I will just be expected to try harder to make my life work.

I've been thinking about my nervous system. Throughout my entire life, I've had a certain amount of continuing physical discomfort and hypersensitivity, although I was often waved off when I mentioned it. So many of the things that have brought me challenges are based in the nervous system, including IBS, severe cramping that has no mechanical cause, tissue inflammation, migraines, shingles, and of course, bipolar disorder, among others. Toni pointed out that all of those things plus my bad knee happen almost exclusively on the right side of my body--a clear indication of a central nervous system processing issue. I wonder if I got whacked on the right side of my head at some point when I was little.

Right now, my physical pain is bad. Really bad. I bear pain well, though, and I'm trying to just grit my teeth and go about my responsibilities. Emotionally, though, I'm reeling. I'm so angry. How can this be that I just got through the emotional process of accepting what BP was all about and what my life would and would not be like as a result, and then my central nervous system decides that BP isn't enough so it produces this neuralgia/neuropathy illness on top of the first brain malfunction.

OK, it's totally immature and self-pitying, but I'll say it: What did I do to deserve this? What did I do that was so wrong I am to be punished repeatedly?

There are hundreds of ways to lose your life, but perhaps one of the cruelest is to watch as everything you value in yourself is stripped away from you in stages, but your biological processes continue, you look no different, and you must continue on as though nothing is wrong. I'm getting it two times over, and that’s an awful lot for anyone to try to hide day in and day out. The stress of it has been bearing down hard on me, and there will be consequences.

Shingles. When I went to the doctor because I had shingles, he said that it was a wake-up call about not only the stress in my life, but something more, some message my body was trying to make known. Sure, I was exhausted and not sleeping enough and I was very stressed. Lots of people live that way every day, but they get colds and flu and passing viruses--they don't get a major eruption within the nervous system. My dear Dr. G said that when the nervous system is not in stasis it is that same nervous system that will be the first to react to internal or external stressors. It begs the question (and the question is being researched), just how much are the BP and the chronic pain syndromes part of the same etiology? The answer is: very likely, and, they probably aggravate each other quite a bit. Screwed. Definitely screwed.

Maybe my own cosmic truth is that I'm not a good person, after all, and this is my comeuppance.

Let us give thanks

Sometimes, it's the little things that make life more pleasant. Today, the Brainucopia would like to celebrate the season finale of 24 on Fox.

It's over, and that means I will no longer be forced to seek shelter in the basement every Monday night in my attempt to escape the guns, the bombs, the bio-weapons, the nukes, the terrorists, the traitors, and the testosterone.

Jack Bauer, kudos on a job well done. The world has been saved yet again, thanks to a very willing suspension of disbelief. I hope you enjoy your summer vacation as much as I'm going to enjoy it.

Hallelujah. Free at last, free at last, thank God Almighty, I am free at last.

Hail the intrepid astronauts!

May is thrilled, thrilled that there is a team of astro-mechanics-technicians fixing the venerable old Hubble space telescope.

NASA's picture of the day is one of my favorite Web treats, and the majority of the pictures are Hubble-generated.

My profile picture is a Hubble image, and it's just one of thousands of stunning revelations of the universe beyond what we see from our local skies.

I know it hemorrhages money, I know the technology is a wee bit older than NASA prefers, but seriously, funding Hubble--the eye into space's beauty--seems so much more worthwhile than spending federal dollars for yet another bridge to nowhere or an airport that serves only one large corporation, or any number of pork-barrel projects. Why not spend money on something that inspires us (kids included) to learn and to ask questions and to appreciate with wonder?

Thanks, NASA and thank you Congress for patching up the old girl yet again.

Maybe I am old

It started with the iPod. I uploaded my CDs and made playlists. I enjoyed having access to music I liked whenever I wanted, except for in the car where I listen to NPR or one CD at a time.

The other day, I decided it was time to give Peter Gabriel a rest, but when I shuffled through my CDs, I realized that apart from Viva la Vida, I haven't bought any music in years. Years.

After a browse through iTunes, I was struck by a harsh reality: I don't know who these people are. OK, Green Day has a new CD out and that explains why they were on SNL this week. I know who Adele is (she was on Ugly Betty on Thursday), but otherwise, I was so lost. Singer-songwriters? Nope. Pop? mmm, no.

Where have I been? When did I become such a geek?