Wednesday, January 27, 2010

Potty Mouth

Disclaimer:
If you are looking for a light and fluffy piece about puppies, check this out.
If you have a delicate disposition and detest bathroom talk, go here.
If you are related to crazy lady and find her medical stories upsetting, visit here.
None of the above? Consider yourself warned.Crazy lady has been making "the rounds" with various neurosurgeons, searching for a good fit for her upcoming surgery. She's screwed because the damage is severe, but she knows that there are different levels of being screwed-- totally, somewhat, or maybe just a little. She leans towards surgeons who have a lot of experience with a "little screwed" attitude. (She only prefers the "totally screwed" outlook when dating wicked men...)

Anyhow, one of the most disheartening elements is the number of years she has been symptomatic, with no one saying "ah ha!" after a trip to the emergency room, neurologist or regular doctor. She learned early on that it is important to be your own advocate, especially when dealing with medical professionals. Doctors live in a world of numbers and assumptions. Are you fat? Must be sleep apnea. Female trouble? You're hysterical. Shitting yourself? Stress induced, most likely irritable bowel. Doctors look at people, lump them into a normal statistical range, and never connect the dots or consider the outliers. Using outliers (those "rare, but possible" scenarios) to find a diagnosis is too expensive. It does not make sense when you live in a universe driven by profit. It only makes sense if you're a staff writer for House. If you-- as a patient-- suspect that something is wrong, you need to find a way to "connect the dots" and prove it to your doctor.

Most of all, always remember that doctors are human beings, and they make mistakes.

This was a hard lesson to learn. Crazy lady has a long history of swollen bellies, high fevers, night sweats, internal bleeding and rashes. It took the powers-that-be over 25 years to find the cause. There was no cure, but the diagnosis heightened her doctors' sensitivity to outliers. Knowing this, the geneticist cautioned crazy lady in the early days of her disease management:

"Your doctors do not know this disease, and you will have to be the expert. YOU will have to teach THEM."

So, crazy lady has learned to provide Mayo clinic summaries and "cheat sheets" to new physicians, especially anyone who needs to perform surgery. She has learned that surgeons never listen to the patient. They are "cutters"-- they focus on the rot in your system, and they "cut it out." She gets tired of surgeons claiming, "It's no big deal, we'll just go in and fix it." Inevitably, she overhears them grumble in recovery, "Holy shit. Well, that was interesting." Her favorite words-of-wisdom from one of her doctors, after having to remove her "female parts?" "Thank God you listened to your body, and not us (doctors). I thought for sure we were right. I guess we were wrong."

But, I digress. Like crazy lady says, "Anger at the past gets you nowhere." Past mistakes, however, can help you prevent future drama. Let's take the most immediate mistake-- the current issue with her spinal cord and column. What happened?

Well, as far as she can tell, it started with a carpal tunnel diagnosis many years ago. When she was in Academia, she oversaw massive medical history databases, including the National HIV Registry and the UK Breast Cancer Registry. Later, when she slaved for Corporate America, she worked with medical and finance databases. She also spent extra hours writing short stories and books. She had sold her first story when she was 15 years old to Penthouse Magazine, and she was hooked. (Did you really think the forum was written by perverted men? hah!). She averaged 18 hours a day at the computer. When her hands went numb, she wasn't surprised at the carpal tunnel diagnosis.

Then, four years ago, crazy lady lost bowel control at work. One moment, she was talking on the phone to some bank executives-- and the next moment, she was shitting in her pants. (The irony of the situation was not lost on her.) What did she do? She put the phone on mute, adjusted her headset, and ran to the bathroom. She sat on the toilet and continued her conference call. Okay, perhaps this was not normal human behavior, but she was more worried about stopping unethical banking practices than crapping in her pants. When she started having bladder problems later that night, she (finally!) went to the emergency room. Their diagnosis? Maybe stress, irritable bowel, weak muscles, and/or lactose intolerance. They taught her Kegel exercises, pumped her full of drugs, and sent her home.

And here was her first critical mistake-- crazy lady did not question the diagnosis, and she devalued the problem. She still doesn't know why. Maybe because it was an "embarrassing" problem, and her doctors hated to discuss it? (trust me, crazy lady doesn't get embarrassed about bodily functions) Maybe because she had learned too well in disease management programs to "box" pain and discomfort, like all good Stoics? Maybe she was tired of her body crapping out on her? (pun intended) Living your entire life in pain can be exhausting. Plus, stress was a very real issue. She worked for an evil institution, and she hated the politics of her job. Her writing was gaining in popularity, and she was having a hard time juggling commitments. Her characters didn't care if she indiscriminately peed and pooped, but it was a very real issue in the workplace.

Now, she wasn't a complete moron. She continued to bring-up the bowel and bladder problems during her biannual doctor appointments, but no one seemed concerned. Crazy lady stopped worrying and moved on with her life. Only recently did she connect the dots and mention it to her neurosurgeon. She wanted to know "what happened?" and "what can be done to prevent this from happening to someone else?" So, crazy lady compiled 30 years of medical records, built a database, and developed a "symptom" timeline. She overlayed the symptoms with the "misdiagnoses" for a 20-year span. (Yeah, I know, her neurologist called it OCD, before he scanned the results into the computer for his own research study...) The surgeon's response to her analysis?

"Huh. If they had run the MRI 4 years ago in the ER, they could have done the surgery and stopped the problem. Now, it's too late."

Then, he said something that made her furious with him and herself:

"Maybe you should have said something sooner? How were we suppose to know?"

Ah yes, misguided blame and guilt. The end result? (Besides suppressing the desire to twist the surgeon's testicles until he stopped screaming?) Crazy lady was reminded of some valuable life lessons...

Trust your instincts.
Listen to your body.
If your doctor won't listen, find another one.

Don't ignore problems that last for days, weeks, months and even years. Find an answer that makes sense for your body. Always have an updated copy of your medical records, and have faith in your ability to "connect the dots." Finally, to paraphrase her geneticist, never forget that YOU ARE THE EXPERT.

7 comments:

Khyra The Siberian Husky And Sometimes Her Mom said...

I'm so happy I'm crazy enough to read the post!

I would have hated to miss it had I opted for the puppies or the flowers!

Once again, I'm at a loss as to what to say other than 'you go' (pun intended?) -

Too many medical types do think they are gods - and they aren't - they are just like us - dog forbid -

They fart
They pick their noses
They have funny habits

Thanks for sharing in hopes at least one other person doesn't experience the same steps to hell you've climbed -

Khyra's Khrazy Lady

The OP Pack said...

WOW!!! Glad I read too, we go through a lot of doctor crap here too with my DH, they screw things up so many times. Just too freaking scary.

Twinkietinydog said...

Tough and sad, really. I know my momma was feeling tons of empathy as we shared your post. It took her 15 years to find somebody who believed her and didn't try to convince her "It's all in (her) head". Your point was loud and clear and we were all ears. Thank you for sharing.

j said...

you, my brilliant friend, need to write your case including the part about you programming a database of symptoms and analyzing "outliers" as an episode of House and sell it to Fox. You can make some money for the best treatment for you and evangelize millions with your message of being your own advocate all in one fell swoop! My guess is House's character would be so intrigued by you he'd engage in incredibly witty flirtatious banter with your character--as only the two people smarter and more irreverent than anyone else they each had ever met--and then they would want you to be a staff writer to continue the story of how House includes you on his team unofficially and on your "dates" where he stops by wherever you are working on your laptop at all hours of the night and starts throwing a ball up against a wall spouting off the current patient's symptoms to you and you type them into your database and come up with the insightful data analysis finding that triggers him to figure it out. What do you think? it would be my favorite episode...

Wild Dingo said...

Oh my dog. I almost pooped my own pants reading this. And you know what's funnier? i was eating BBQ ribs at the same time! I cracked myself up so hard, my dogs got that worried look on their face.

I like that dude (or dudette) J's comment. good idea for monay making!

as for your advice, given our emails earlier today, i will call a new doc tomorrow and keep hammering. you are correct. sometimes though, it's exhausting to deal with the stupid system. and a stoic irreverant attitude toward the system is all anyone can do to keep on keepin' on.

but you've convinced me to keep hammering.

and i want to see a house episode about this!

hugs,
julie, loki and juno

B said...

CL: This is just an unbelievably crappy situation. I'm sorry that this has happened to you. I hope for the best outcome for you after the surgery. I thank you for sharing your story so that others can learn from it.

Best of luck -- keep us posted.

Linda of Bo

P.S. At least you are not alone:
http://www.youtube.com/watch?v=gIqrGsSBob0

Tweedles -- that's me said...

I will say I picked the right one to read.
The run around you were given by "the ones who are supposed to know" is disgusting!
Tweedles
mom