Insight into not taking care of me

This month's More Magazine, the magazine for women over forty, had an article that hit close to home. I like this magazine but often find the content a little irrelevant to my life over forty. I just ain't that fabulous. Why, then, May, do you subscribe? Why, indeed. Perhaps it's to reassure myself that I still have time to become that CEO (or small business owner) I never really dreamed of becoming. Not that I didn't have the potential.

The article is about conundrum of having a cram-it-all-in life that exacerbates or even triggers a chronic illness. The intro went something this: When a woman is diagnosed with a chonic illness, she is often at the peak of her earning power and productivity. How do you choose between your livelihood and your life?

I wasn't even into the meat of the article--along with sidebars--when my emotions got the best of me. I kept waiting for the part where the article said, "And then after a year of being diligent with her treatment, the illness abates and Jane over-achiever goes back to doing those things she feels driven to accomplish."

That part never comes. But I knew it wouldn't. The article briefly touches on the fact that mood disorders also need to be accomodated just as chronic pain, lupus, or M.S. do. I was so moved by this article, I wrote a letter to the editor. I believe when a publication writes something so relevant it evokes a visceral emotional response, it warrants the effort of letting the author know that.

Before I was even half-way through All in a Day’s Work (February 2009), my eyes had welled up with tears. At 43, I was diagnosed with Bipolar Disorder and I thought it was the worst and truly most devastating thing that could happen to me in my lifetime. The stress of managing my illness and keeping it a secret at work was almost more unbearable than the BP itself. I learned some coping skills so I could work around my illness on a day-to-day basis, mostly so nobody would know how much it was affecting me. I was exhausted by that effort. My doctor had told me it was critical to cut back on my commitments and be kind to myself in order to reduce potentially dangerous stress levels, but I just kept pushing; I was determined to prove that no illness was going to make me a lesser version of the super-woman I had always been.

At 47, I was diagnosed with a mystifying yet debilitating nervous system disorder. Again, I was told to stop doing so much, but I actually started doing more: In addition to long days and erratic, punishing work hours in a very demading career, I spent the rest of my energy co-founding a fledgling nonprofit and writing and maintaining four blogs. I came down with shingles but instead of taking time to recuperate, I packed up my anti-virals, got on a plane and flew across the country to attend a conference.

Now I have progressing nerve damage in addition to post-herpetic neuralgia. Unless I slow down and find a different pace for my life, the nerve damage will continue. It is already becoming permanent. Still, I feel like I really have no choice but to just keep doing what everyone has always expected of me, especially in my professional life. I don’t look sick or act sick—until I get home—so nobody can even begin to appreciate how grinding my days actually are. When I have let on that I’m not doing well, the usual response is, “But you look OK. Your bad days are still more productive than most people's worst days.” Maybe that’s why expectations don’t change—everyone who knows me still sees me as part of an obsolete reality. I feel that I have to pretend that this obsolete reality is intact. I don’t want to disappoint anyone.

Thank you for an excellent and timely article. It has certainly helped me to know that I’m not the only over-achiever struggling to balance health and work, even though I may not have accepted my situation as well as the women profiled in the article.

Sincerely,

May Voirrey

My next step is to figure out whether or not my conditions will be cured; if not, how can I not resent and punish them with such acrimony?

This song just keeps rolling through my head like those manufactured waves at the water park. About the twentieth time it played on Radio Brain Wave, I decided it was a good choice to put on my iPod for the folder called "Suicide Soundtrack." That's the music I plan to take with me--or the music that will see me out--when the day comes. I don't listen to that playlist as a collection. Not yet. Considering the overall bounce and tone of this tune, I like the irony of it in this context.

Pack up your troubles and just get happy
Ya better chase all your cares away
Sing Hallelujah, come on get happy
Get ready for the judgment day

The sun is shining, come on get happy
The Lord is waiting to take your hand
Shout Hallelujah, come on get happy
We're going to the Promised Land

We're heading 'cross the river
Gonna wash our sins in the tide
It's all so peaceful
On the other side

Forget your troubles and just get happy
Ya better chase all your cares away
Sing Hallelujah, c'mon get happy
Get ready for the judgment day

The sun is shining, come on get happy
The Lord is waiting to take your hand
Shout Hallelujah, come on get happy
We're going to the Promised Land

We're heading 'cross the river
Wash our sins away in the tide
It's all so peaceful
On the other side

Forget your troubles and just get happy
Ya better chase your cares away!!
Sing Hallelujah, come on get happy
Get ready for the judgment day

High anxiety

My mother is going to file for bankruptcy. She isn't talking or throwing drama all around, so she must be serious. And scared. I'm not unsympathetic, but she's been living beyond her means for most of her adult life. It was bound to catch up with her sooner or later.

There's nothing I can do to help her. I don't have any money, especially since I'm racking up medical bills on an almost daily basis. I am troubled by her situation, though, and my reasons are strictly self-centered.

When my father was dying, my mother said she wanted me to be able to sign checks on her main bank account, which includes a VISA card and overdraft line of credit. She wanted to make sure someone could pay bills in case she were to fall ill herself. It seemed like a practical arrangement. When the papers arrived from the bank, there was nothing to lead me to believe the transaction was for anything other than what we had discussed. I asked if this arrangement would have any effect on my credit profile and I was assured it would not as I was just getting signing authority similar to a fiscal power of attorney.

I pulled my credit reports last night and was surprised to see that not only is my mother's account showing up on my report, it's also listed as a joint account with joint responsibility. Did I mention my mother has shopped her way to an outstanding balance of $10,000 on that VISA alone?

My mom has unplugged her phone since she can't stand the calls from the collections agents who are hounding her. I can't call, so I wrote her an email explaining that my husband and I are getting our paperwork together so we can refinance our mortgage. I need to be taken off of her account before she files for bankruptcy. There is no way I want to be held accountable for her financial mess, and I don't want her mess to affect the hard work my husband and I have put into our credit score.

The silence is deafening. This is my mother's way of not dealing with things she finds unpleasant. I'm sure I'll eventually get reamed out for being a bad daughter who is unsupportive. Having seen all of the inquiry pings to my credit information during that last 18 months, I'd say my good credit has been carrying her for a while now.

I suppose I need to call the bank myself to make this happen because upon further thought, I doubt my mom will deal with it if it benefits her not to. Although I've been telling myself it was an honest mistake, my husband pointed out something that struck me speechless. He recalled that back in October, my mother was talking about her money woes. My husband asked if she got any pension or benefits from my dad's estate. My mother became agitated and angry. She was resentful and speaking as if my father's death was a personal insult. Why? Because my father's death resulted in a financial loss of $1800 a month for my mother.

I was horrified. Suddenly, it was clear. My father was still on life support long after it was known that extending his life was not a compassionate act. I think it's possible my mother kept him alive because she needed the money. The nursing home was horrendous, but my mom insisted his care there was very good and no one could do better. Wanting our father to benefit from palliative care with compassion, my brothers and I offered to pay for hospice care many times. The suggestion made my mother fly into a rage. Of course. Putting my dad in hospice would have meant disconnecting the feeding tube. He would have died within days.

I might have to go back into therapy.

Predatory practices

I got an updated "customer agreement" for my gas credit card yesterday. Normally I don't read them, but I was curious about what was changing. The first thing that caught my eye was the part about what can be changed and when. "We may change the rates, fees, and terms of this agreement for any reason at any time." In other words, I, the customer, must adhere to a strict payment schedule and other limits, but the card company has no such obligation to adhere to any contract it generates. I want this kind of all-encompassing power over my relationships.

The next part that I took a look at was about the money. The APR is increasing--across the board, for all customers--to 23.9%. That's not a penalty rate, a new-customer rate, or a rate for accounts with higher balances. It's just the new, going rate. Wow. What an incentive to use that card when I buy gas. I think I'll stick with my credit union VISA card at 11.9% and buy my gas at the mom-and-pop no-name station down the street. Their price is always substantially lower than the big-name company, anyway.

Next order of business. My monthly payment to Discover Card went up a lot. I pay my bill every month, I certainly pay more than the minimum due, I've had the card a long time, and the government implemented that minimum payment increase a long time ago. Then I notice, with horror, that my APR had also gone up to about 30%. I called to find out what happened.

The phone clerk filled me in. "You underpaid your last payment by $22. That automatically triggers the default rate APR." I was puzzled. "What do you mean, default APR?"

She said, "It's the APR on accounts where the customer has defaulted."
"You mean, as in abandoned the account? The customer has ceased making payments?"
"Yes."

I pointed out that not only do I make payments well in excess of the monthly minimum, I have never missed a payment on this account. The clerk admitted that although that was true, when my minimum payment was increased, by not including that missed $22, I didn't pay the whole thing and that is no different than not paying at all. She said changing my APR was not something she could do.

One of the most baffling and frustrating aspects of my BP and taking lithium has been my inability to keep track of details like paying bills and going to appointments. The stress of not being able to keep things straight in my head causes me tremendous anxiety and self-loathing. Being stupid is a mortal sin when it's me who's being stupid. To avoid problems, I have implemented a collection of strategies that keep my life straight. Calendars, post-it notes (even on the steering wheel of my car), alarms, and more. The most valuable tool in my coping kit, though, is automatic bill pay.

For a mere $5 a month, the credit union pays my bills on a schedule I have set up. All of my bills get automatically sucked out of my account on pay day. No creditor or service provider can access my account. In the past, I had these payments set up via the creditor's Websites, only to find out that the clause in the credit agreement about them making changes at any time also meant they could take the payment from my account unexpectedly (to me) if they adjusted the payment due date. Now I use the bank's service. It's not perfect, but it keeps me from having a brain explosion when I try to manage money.

Why Discover raised my payment by $110 dollars is a mystery. I didn't check my bill, so it is, ultimately, my fault that the payment was $22 short. Still, raising the APR to 30% seems egregiously punitive to me. I can't understand why, in a time when the economy is frighteningly bad, people are losing their jobs, savings, and homes, food banks are empty, and banks are collapsing, that predatory credit practices are understood to be the best way to keep customers and to keep them paying their bills. Are companies like Discover Card trying to strangle their customers and force them into default? What is the advantage?

The more I think about this, the more there's something else that bothers me. I know the economy is bad and people need whatever jobs they can get, but seriously--who works for these companies? How can actual living, breathing human beings go to work every day for unethical, greedy, loan-sharking employers who make an overt effort to hurt people through extortion? Has nothing changed since the days of the company store?

Needless to say, my wallet is getting lighter. I have removed my Discover Card and my gas card, along with two other cards I paid off this year (Although my balances were low, I ditched the cards when the accounts were taken over by Bank of America, which was quickly followed by a letter saying that if I used the cards, my APR would instantly go up to 29%.)

I have very good credit with a steadily declining debt-to-income ratio. I can't imagine the burden these practices are inflicting on people who were already struggling and now find themselves being crushed under the heel of predatory lenders.

Screw the bucket list

At work the other day some coworkers were talking about a writing assignment (they take a creative writing class together) about their respective bucket lists. Someone asked me if I had one. I wasn't sure how to answer. I used to have one, but when my brain turned my life on its head, two things changed forever. First, I finally understood that I had the power to pull the plug whenever I deemed it to suit me best, so having a bucket list wasn't all that relevant anymore. I could tailor my lifespan to my own time schedule.

My second thought was that many of the things I thought I would do in my life just weren't going to happen. It was so cliche. My life hadn't turned out the way I planned at all.

When I was a teenager, I thought I would take time off after high school, travel, and then eventually attend college and become a television producer. My travel plans included Europe, Turkey, Central Asia, India, Nepal, Sri Lanka, New Zealand (but not Australia), and anyplace that was known for exquisite fiber arts. And Madagascar (I used to bake and I used vanilla from there, so it seemed especially exotic).

In addition to travel, I thought I would write something worth reading, a magazine column, perhaps. I desperately wanted to join the Peace Corps--a dream I only gave up on recently. No bipolar, asthmatic volunteers allowed.

I was absolutely madly in love with the idea of owning my own home. I dreamed of an old home--Victorian, turn-of-the-century, or 1920's Craftsman that I could renovate and restore over the course of many years. A garden was a must. I planned on doing all of the rehab work myself because I wanted to learn the skills my father never taught me but would have if I weren't born female. I used to design floor plans and imagine paint colors whenever I passed a house that reminded me of the one in my head. No charming old home is complete without refinished vintage furniture, and I wanted to learn everything about that.

I was adamantly opposed to three things: Working a mainstream office job, getting married, and having children. Somewhere in the basement of my house there are reams of journal writings about these three things and why I wanted to avoid them at all costs. Shortly before I graduated from college, I was in the car with my friend Jeff, traveling along on one of the parkways on Long Island when we passed a series of identical, shiny, trapezoidal office buildings. They were smooth and lifeless. We both stopped talking. A minute later, Jeff said, "Just shoot me if I end up someplace like that and I'll do the same for you."

I thought I would also become a travel photographer one day. I wanted my own darkroom and I wanted to excel at photography. And textile design. And interior design. And something exciting.

None of that happened. I did learn to fly hot air balloons, though. I met lots of stunt people and special effects techs. I didn't make it to home ownership until was over 40 and when I got there, it was to move into a generic 1955 ranch house. I made it to 40 states, so far. I never got to join the Peace Corps or travel out of the country after the age of 18. I don't even have a passport and I don't see any need to get one anytime soon. Changing time zones wreaks havoc on my BP. All of the medications I take are taking a toll on my gut. These are not good travel conditions.

I delved into exercise, especially long, long bike rides--probably the reason for my pudendal nerve damage. My brother has it, too, and he got it the same way. I own four bicycles, but I can't bear to sell them. It's such an act of finality and defeat.

I've hit my mid-life crisis. I'm so bored, I cry. The biggest problem is that I need a new dream and I'm coming up blank. My life is boring, I am bored. I've become mundane--the biggest failure in my book.

Setting limits

March 31, 2009. It's a deadline, it's a goal.

At some point in my business career, a supervisor told me that when you can't see the end of something, set a date and create an end. Even if the situation doesn't get resolved, you will know what to do to save your sanity if you have a decision date.

When I was going through the seriously unpleasant process of becoming egregiously bipolar, I thought I wouldn't survive it. There was no way to know what treatment would work or when it would kick in. I set a completion date. I said I would continue for one year and if I didn't see significant progress at that point, I would stop treatment and stop living. It gave me some comfort to know I didn't have to keep trying if there was no progress, and by setting a horizon, there was a tangible end to what I was going through.

March 31, 2009. I will sever my association with the nonprofit I helped to found and worked very hard to establish and grow. The project is doing pretty well, but the stress of running it is, apparently, very bad for my health. There is enough time between then and now to get my responsibilities transferred, along with all of the files and other materials currently in my possession. I cry about this on an almost daily basis. It is painful for me to give away something that is so precious to me.

June 30, 2009. Everything related to the pain seeping through my body will stop. As it was with BP, if the medical minds working on my case haven't figured it all out by then, I need to move on and accept that I will feel this way for the rest of my life, just as I have since I was in my late twenties. Treatment is expensive and mostly a trial-and-error affair. I already have a certain progression of nerve damage--most likely permanent--so it's not like I've dodged a bullet up til now.

On June 30, it will be 13 months since I started treatment. It will be the last day of a new health insurance deductible year. Spending my money on this problem hasn't solved anything, so if there is no relief at the end of June, I choose to focus my spending elsewhere, such as a vacation or new furniture.

Let freedom ring.

Great minds think alike

Tuesday found me glued to the TV most of the day. Even at work. I wonder how much productive work took place nationwide on Tuesday.Everywhere I looked, people were transfixed by an astounding moment in history.

After the swearing-in ceremony and before the luncheon, the cameras stayed on the new president as George Bush and Dick Cheney made their way to the helicopter that would take them out of Washington.

The camera pulled back to reveal Cheney was in a wheelchair, an apparent necessity after he strained a back muscle. Personally, I had hoped it was just proof he was rotting from the inside out and his frame had lost enough integrity that it could no longer support him.

As Cheney's nurse pushed him along, I was struck by an analogy I've been making for eight years--Dick Cheney reminds me of Mr. Potter from the movie, "It's a Wonderful Life." He growls as he speaks out of the side of his mouth, he's nasty, and he lacks all compassion and meaningful human connection. He's a warped, frustrated old man. A mean old white guy who uses his smarts for evil. Evil, I tell ya.

Once I saw the image of Cheney rolling across the TV screen, I couldn't stop giggling about it all day. For whatever reason, today I decided to do a Google search on "cheney" "Potter." the results were astonishing. Although many people had come up with the same association, it was former Bush speech writer Michael Gerson who actually had the nerve to say it publicly.

Later, writers for The Boston Globe, US News and World Report, and the Washington Post all recalled the same image, as well. That's company I'm happy to be a part of.

Sigh. Sigh.

Not feeling so great. Normally I would attribute it to the time of year, but the weather here has actually been quite pleasant (except for last Monday when it sucked, but it was like that from Seattle to Atlanta).

I realize that I haven't been as compassionate as I should have been toward those I've known who suffered chronic pain. This kind of condition is difficult to describe in a way that really conveys how grinding it gets to be. Patience is not my strength when it comes to discomfort. I don't whine--I leave that for my husband. Instead, I turn inward and question everything.

Is it my fault? Am I making this happen? Is there something I'm not doing that I should be? Is it in my head? Am I the poster girl for somatization disorder?

In May of 2008, I started treatment for chronic pelvic pain. The doctor said this would also help my post-herpetic neuralgia. It took awhile to notice any relief, but there was a respite--for a short time. Too short. It all came back with a vengeance around early November, and it spread. I'm starting to have pain everywhere.

The apparent reason for this is related to a malfunction in my central nervous system. You know--the brain. Oh, that again. My nervous system is over-excited and sending out incorrect messages to various muscles and pain receptors. And it's escalating despite the barrage of medications being thrown at the problem. Among others, there's a muscle relaxer normally prescribed for MS; there are two anti-convulsants; there is valium; there is an antihistamine to slow nerve receptor traffic; there is no end in sight.

I got the statement for the CT scan I had done on December 22. The procedure cost almost $6,000. what the hell did they scan? As I told my friend Jolie, this was, without question, the most expensive ten minutes of my life. It appears I was scanned twice. What an interesting patient I must be. Or did they also bill be for the guy who came into the imaging suite after me?

I was expecting a $1500 procedure. When I think of this, it makes me sad. Not angry or frustrated. Just sad. One more thing. One more thing.

I also shared this observation with Jolie: It would be one thing to spend all of my money and be cured of cancer; it is quite another to spend every last dollar and be left with no answers, no cures, no relief. Enough.

To add yet one more disappointment/frustration to my day, the Flip Video camera I got from Angie's List just up and died after I had used it only four times. Angie's List had a report drive back in October. As a thank-you for submitting 20 reports in a month, I received a Flip video camera, Classic model. It was fun while it lasted.

I think the people at Pure Digital (Flip's parent company) excel at providing what I call "The illusion of customer service." If I could rate them on Angie's List, I would and I would nominate them for the Penalty Box. If you send an email for tech support, someone answers your inquiry within four hours. Yeah...They just don't say anything relevant or worthwhile. It's like when you're on hold for customer service and the recording keeps assuring you that your call is important to us. Bull. Shit.

Four emails later, I may or may not get a new Flip. Do these people have any idea what Angie's List is or what they do?? Anyway, one of the pieces of information I was asked to provide in order to get a return authorization (all fields required!) was the camera's serial number. See, that's a funny joke because there is no serial number anywhere on the camera! Maybe it's something you see when you turn on the camera. Hmm. Yeah. I can't turn on the camera.

So, May Voirrey finds herself in a bit of a melancholy mood. I don't feel well, I seem to have gremlins in my house, and every time I think I have my health insurance finances figured out, I'm wrong yet again.

It occurs to me that maybe the muscle relaxers and nerve suppressors are also whittling away at the sunnier aspects of my mood spectrum. Gonna be unhappy either way.

The Brainucopia salutes...

Today the Brainucopia is brimming over with good feelings for pilot Chesley B. "Sully" Sullenberger III. Sully is the pilot who so skillfully managed to land a dead jet into the Hudson River--next to the ferry terminal, no less. The amazing feat resuted in no deaths and no serious injuries.

Those who know aviation have repeatedly said that although the entire event was a miracle, it was, without question, the exceptional skills of pilot Sullenberger that resulted in 150 people not losing their lives.

In 1994, May and her not-yet husband were on a US Airways flight that nearly crashed on its descent into Baltimore's BWI airport. Tragedy was avoided on that day, also, because of a skilled and quick-thinking pilot. We understand how it feels at that second when you realize your plane may not make it safely to the ground, and the relief that fills you when you actually get there.

So today, we applaud Chesley Sullenberger and pilots like him who not only know how to fly a disabled plane, but who also look after the safety of every person on board.

Cheers!

Oh, my.

I've had this pair of wool slacks in my closet for about three years now. They're very good quality, lined, well made...They've been in my closet because they never really fit me right. They were comfortable in the hips, but way too big in the waist and front.

I always thought I would get them tailored. Of course I didn't because I don't get anything tailored. The outfit I wanted to wear today suddenly didn't fit. It fit last week, but not this week. In an act of desperation, I got out the black wool slacks.

It's making me a little sick to my stomach to realize that "fat" pants fit me now. They're even a bit too snug when I sit down. The fat pants were my last proof that I could stop gaining weight.

It's a very sad day when the fat pants fit.

Gimme Shelter

Today's post is brought to you courtesy of Ben Affleck, Working Title Films, The Rolling Stones, The United Nations High Commissioner for Refugees, and the people of the North Kivu region of the Democratic Republic of the Congo. Help--It's just a click away, click away... If only it were that easy.

Public education: Forming young minds for the future

Today I got this message from a woman who sponsors a refugee family. I always thought that teachers in a public school weren't supposed to espouse their religious beliefs in a classroom. To do it in a way that is so insidious--and has nothing to do with teaching elementary school Language Arts--makes me sick to my stomach.

I had no answer for Jinny. I am still too dumbfounded. I know little Su and he's whip-smart but so innocent and naive, I don't think he's capable of lying about his teacher. I want to drive over to that school on Monday and smack this woman upside the head. Better yet, I think she should be sanctioned. This is disgusting and has no place in a public school. And so many think brainwashing is the domain of Communist countries and Christian homeschoolers...

Su Paw, the 10 year old, has been telling me some things about his teacher that really disturb me, and I want to know how the best way is to deal with it. He is in the fifth grade and his teacher's name is Mrs. Garcia.

The first thing that we talked about was when he wrote a paper describing his Thanksgiving with me and my family. My grandson's name is Darwin (trust me, that wouldn't have been a name that I would have chosen--My kids names are Christine, Patricia, Tim and Paul). Mrs. Garcia made a comment about Darwin in terms of religion. I explained to Su that some people have opinions about Darwin, but my grandson's name has nothing to do with Charles Darwin.

Next--today, we were talking about Obama and he told me that Mrs. Garcia told the class that Obama wants to allow doctors to cut babies out of women's stomachs. Obviously, Mrs. Garcia has a problem with abortion. She apparently had a mock election in her class and Su said he voted for McCain because he was very afraid because of the baby issue. I've met Mrs. Garcia and she is a very warm, wonderful person, but she's obviously allowing her personal views "voice" in her classroom. How do I deal with this? Being a teacher for more years than I care to remember, I don't want to be a pain, but I seriously object to her using her classroom as a platform for her religious beliefs.

This is no rural backwater in the Bible Belt. We live in a diverse, major metropolitan area. I guess religious zealots are everywhere. The irony here is that Su's family is Christian, but his parents once told me that they look forward to raising their children in a culture of open minds.