Despair, Inc - Mediocrity

(image from the glorious Despair, Inc.)

I grew up a perfectionist. And then, in my 20s, I got very, very sick.

If there’s one thing a person learns from serious or extended illness, it’s that sometimes you have to let perfection slide and go with whatever works. Illness reduces available time, energy, money, and just about anything else you can name. Once, I could create perfection by ignoring my natural limits and overextending till my goal was reached. Now, that’s really not an option. The only choice is to live within my new limits. Can’t clean your house often? Learn to live with dirt. Can’t post on the blog as much as you want? Learn to live with a light posting schedule. Have to cancel a big event that you’re not feeling up to? If you can’t force yourself, what can you do?

In the decade since my original illness, I’ve seen many other perfectionistic, Type-A women fall prey to disease. It happens so often that I’ve developed a theory: illness happens to Type As to force them to slow down and stop sweating the details. Maybe it happens because stressful lifestyles leave women prone to physical exhaustion that becomes illness. Or maybe it happens in a more touchy-feely, “life sending you a lesson you need to learn” sense. But one way or another, illness is often the teacher that sets perfectionists on the path toward a healthier approach.

As a newly minted “good enough”ist, my biggest comfort is the 80/20 Rule. According to this theory, 80% of the benefit in most fields comes from only 20% of the work you put in. After that, you receive smaller and smaller rewards as you put more and more effort into perfecting the details. Of course, 80% is only a “B.” There was a time in my life when Bs were not okay. But if you’re dealing with very limited resources, the 80/20 rule is pretty darn comforting. Who needs to waste so much more time on that last little margin? It’s not my own limitations, it’s economic efficiency!

Why bring this up now? My next couple of posts will be about a book called Good Enough is the New Perfect. The authors say that the title is a bit of a touchstone for dividing the perfectionists from the, uh, recovering perfectionists. Real perfectionists recoil at the idea of “good enough,” saying it’s the same as settling for mediocrity. But for me? These days, it’s basically my credo.

How do you feel about perfectionism versus “good enough”ism?

 

Migraine Monster #28, from excellent artist and blogger Migraine Chick

I have been on disability for the past four years.  My last job was through the federal government, which has its own disability safety net — basically, if health problems render a federal employee unable to work for an extended period, the government provides a fraction of her former salary plus access to health insurance at employee rates.

On its face, this may sound like the best deal ever — money without any requirement to work!??!?  I’ll admit that when I first stopped working, visions of endless craft projects danced through my head.  In fact, Two Wishes began as a craft blog, back before the distractions of engagement, wedding blogging, and baby.  But there are two problems with this supposedly sweet deal.

One, I’m too sick to enjoy it.  The dream projects never happened because my energy was already spent on the basics of daily living, or I had another migraine, or I was too brain-fried to think straight.  And that was before the baby came along — now she claims all available energy, and even those “basics of daily living” take a back seat.  Cooking, cleaning, laundry, showers?  Sometimes, but less often than I care to admit. Less immediate needs?  I’m still working on action items — important action items — from two years ago.  Personal projects?  Never gonna happen.

Two, the constant parade of tasks undone lays waste to my self-esteem.  The failures are generally small, but failure is more common than success.  I try to put a good spin on things, but the fact remains that once I was a functioning human being and now I am not.  Before the government would grant me disability, it had to investigate and declare me unable to do my job.  My supervisors had to swear that I couldn’t meet even the most basic requirements of showing up regularly and producing minimally acceptable work.   I went into that job a high-achieving perfectionist with sterling credentials, and I left a declared incompetent.  And that was before baby, when I was at least vacuuming and bathing regularly! I’m usually blessed with an optimistic outlook, but it’s a struggle to keep up my self-esteem when life is a long series of unmet expectations.

Here is the problem with Unfinished Posts Month — often the posts are unfinished because I have no easy wrap-up for the thoughts.  Nice if I could tie this together into a deep thought or lesson for living, but life isn’t always that neat.  And I’ve never been good at writing conclusions.  So, yeah … long story short: disabling illness can make you feel bad about yourself.  The End.

 

Thanks, everyone, for your patience, kinds words, and support during my absence.  I made a bunch of medication changes earlier this month, and it sent my low-level postpartum depression into a crisis.  In retrospect, I’m glad the crisis happened, because it spurred one other medication change … onto antidepressants.  (I’m using Cymbalta, which is both an antidepressant and an anti-pain drug for my fibromyalgia.)  While I was “more or less functioning” before, I feared I was missing the fleeting, precious joys of Elsa’s first year.  The drugs helped almost immediately, and I’m feeling much better and am a happier, more patient Mommy to boot.

Hopefully also I’ll be a more energetic, more regular blogger…..  Looking forward to lots of good bloggy conversation to come!

 

I know a few of you are “expecting to expect”.*  And of course babies can happen whether expected or not.  So if you’re in the US,** and especially if you purchase your own health insurance,*** this article is absolutely worth a read: Health Insurance Woes: My $22,000 Bill for Having a Baby.****


* Forget who came up with that wonderful phrase — Jenna? Shortie? Anyone?

** ‘Cause some of you have national health insurance, sigh.

*** Employer-provided insurance usually has much better maternity coverage than single policies.  (Though it still wouldn’t hurt to double-check.)  I’m insured by the same company mentioned in the article, but through the federal government.  And our total bill came out around $500, almost entirely because Elsa’s newborn jaundice and heart murmur fell outside the superb “maternity” coverage.

**** And then stop back!  I’d be curious to know your thoughts!

 

The promised baby update is coming on Monday. Ish. Monday-ish. I need to think deep thoughts and whatever, so it could take a while.

Meanwhile, I just had to share this photo of a blue rat:

Mostly because it’s incredibly cute.

But also, this rat turned blue because researchers injected it with blue dye as medication for a spinal injury. Amazingly, it WORKED — paralyzed mice started walking again. And the only apparent side effect was this adorable blue tint.

Oddly enough, this week my doctor prescribed me dye-that’s-also-medication as well. This one turns your urine and tears a disturbing blood-orange color. Doesn’t seem to be working as a medication, though it definitely works as a dye.

Before I stop taking it, I kind of want to see the orange tears. Okay, I really want to see the orange tears! But I don’t know if I’m willing/able to provoke myself into depression in exchange for the experience…. (Mr T refused to make me cry, so I’m on my own. Darn him for being a good husband and nice and stuff.)

What do you think — would you force yourself to cry if it meant checking out your one-time-only freak-of-nature tears? How would you do it??

(thanks to Consumerist for the news and photo)

 

I realize this probably isn’t circled on your calendars, but May 3-9 marks Vasculitis Awareness Week 2009. Vasculitis is a somewhat rare disease, and because symptoms vary it can be difficult for doctors to diagnose. Some vasculitis patients suffer symptoms for years before receiving effective diagnosis and treatment, so it’s useful for people to know these diseases are out there.

I was almost killed by vasculitis in my mid-20’s, and share my story here as a small way to raise awareness.

What is Vasculitis?

Vasculitis is an inflammation of the blood vessels. Because blood vessels are so central to the body’s functioning, this inflammation can lead to a variety of symptoms: the most common are low-grade fever, fatigue, weight loss (loss of appetite), skin ulcers or rashes, and pain in the muscles, joints, and/or nerves. The causes aren’t well understood, but many vasculitis diseases (vasculitides) seem to be autoimmune in nature (caused by the immune system’s mistaken attack on the body itself, as with the better-known Lupus, MS, and Rheumatoid Arthritis). Treatment generally involves a combination of corticosteroids to combat inflammation and chemotherapy to weaken the immune system.

My Story

My own form of vasculitis is Wegener’s Granulomatosis, an autoimmune disease that most often affects the respiratory system and kidneys.

According to the Vasculitis Foundation, researchers estimate that 2 people out of every million are diagnosed with Wegner’s Granulomatosis each year. My “2 in a million” moment came in 1996. I was just back from a few years abroad and (much to my parents’ relief) ready to start summer classes for law school, but I never felt right that summer. I had a temperature around 99 degrees that never seemed to go away, my nose ran constantly, and I was waking up every morning with bloody phlegm in the back of my throat. Then came nosebleeds, odd pains in my lungs, a wheezing sound when I breathed, and overall a feeling of being really unwell. Toward the end, I started coughing up pieces of lung. That’s when I really grew concerned.

I was a frequent visitor at Student Health that summer, dragging myself in every time a new symptom appeared. But for the most part, the doctors there didn’t see anything too unusual. They said it was a sinus infection, then “not a sinus infection, maybe allergies, probably nothing” (when I pressed my concerns, the doctor said 99 was “barely a fever,” nosebleeds “sometimes just happen,” etc), then “maybe pneumonia.” Meanwhile, I grew worse each week. By the time Finals rolled around, another Student Health resident finally referred me to a lung specialist. The specialist couldn’t see me for a few days, and the doctor called me every day in the meantime to check in. Still unclear on the seriousness of my situation, I told my mother about “the nice doctor who’s calling me at home to see how I’m doing.” My mother replied, “he’s calling you at home to see if you’re still alive.”

Sure enough, the specialist checked me into the hospital immediately. By that point, I was so weak I routinely stopped breathing for a few seconds at a time. My airway was swollen to only a few millimeters wide (the source of that wheezing I’d been hearing for weeks). A definitive diagnosis requires biopsy, so they put me under to take a sinus biopsy — in the process, I suffered a pulmonary hemorrhage and wound up on life support. But as soon as they confirmed the vasculitis and started me on steroids and chemo, the inflammation began to subside and everything took a turn for the better. I was in the hospital for a week, then took a year off to take the drugs and rebuild my strength.  As with cancer, there’s never a guarantee that the disease won’t reappear. But I’ve been in remission for over a decade now, and there’s also a chance it may not reappear.

Why Should You Know About Vasculitis and Other Autoimmune Disease?

Autoimmune diseases aren’t common, and hopefully you and your loved ones will never face one. But because their symptoms can be very general (“I’m exhausted,” “I don’t feel well,” “I have a low-grade fever”), doctors can’t always diagnose the problem quickly. As a health-care consumer, here are 2 useful things to remember:

(1)  If you have widespread or long-lasting undiagnosed health problems, especially if they include a prolonged low-grade fever, consider asking your doctor about autoimmune diseases.

(2) There are a few simple blood tests that measure inflammation in the body. (I’m most familiar with the “Sed Rate,” which has an added advantage of being super-cheap.) If you have extended symptoms that your doctor can’t figure out, consider asking about these tests. They are non-specific because inflammation can have many causes. But a particularly high result could be a red flag that further testing is warranted.

(3) And if you or someone you know is ever diagnosed with a vasculitis or other autoimmune disease, remember that the body is amazingly resilient and can handle a lot of attack.  There are many drug treatments available these days, and hopefully remission will be possible.  It’s never the end of the world!
 

I am on the tail end of a 4-day headache.  Though I’m glad the pain is (mostly) gone, the aftermath is never fun.  Stumbling, blinking, into the light; apologizing for the many things let slide; picking up the pieces of a life on temporary hold….  I always imagine it’s what an addict faces after a particularly bad bender.

Among other things, I missed the BlogHer – DC conference on Monday.  I found that particularly traumatic, because in a sense blogging is all I have at the moment.  People blog for many reasons … business development, creative outlet, to enjoy a community of readers … essentially, I blog to keep from disappearing.  Since my illness got serious, two or three years ago, I haven’t worked.  I can’t get anything done around the house.  My outing frequency is one step from agoraphobia.  I am substantially less creative, and my brain rarely works as it should…..  So I blog.  I blog to give my days a little focus, to remind myself there’s still a skill set buried in there somewhere, to have some answer to the question “what do you do?”.

But right now, even that feels a bit much.  So, I’m taking a week away from the Web.  Hopefully, by next week I will have tackled a few items off the to-do list and/or gotten out of the house a few times.

Though I hope to fight the siren’s song of our bed, it always gets me sooner or later.  And there are always animals.  So, if you ever picture me out here living life, it’s always safe to picture this:

Have a lovely week, everyone.  I’ll catch up with you soon!
Tara
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