10.01.2010

The Tale of the Teeny Tiny Woman

Once upon a time there was a teeny, tiny woman.

The teeny tiny woman kept getting teenier and tinier no matter how much she ate.   And she ate a lot.  Two years ago this week the teeny tiny woman was very teeny tiny.  You could count all her ribs from the front or the back, and you could see her lymph nodes through her skin.  She had a “depleted posterior” and “temporal wasting” (this is how doctors describe being very teeny tiny).  Her hair was falling out, her stomach was upset all the time, and she didn’t sleep very well at night because of night-sweats that drenched her sheets and woke her up.  Two years ago this week, the teeny tiny woman stepped on the scale, and it said 89.

The teeny tiny woman went to her doctor, again.  She had been to the doctor many, many times before, but this time when the needle on the scale dropped below 90, it scared her.  This time, she thought the doctor might be concerned, too.

Turns out, the teeny tiny woman was wrong about that.  The doctor spent five minutes with her, lectured her about contraception, and then stood up to leave.  When the teeny tiny woman asked the doctor to wait, she wanted to discuss the issue of why she kept losing weight, the doctor said, “I don’t know what to tell you about that,” and walked out of the room (for those who are curious, this doctor is a woman).

The teeny tiny woman had been summarily dismissed by doctors many times before — doctors who couldn’t figure out what was wrong; doctors who, perhaps, didn’t believe her when she told them how much she ate.  She knew her case was complicated.  She was also being treated for severe inflammatory arthritis with a mild lupus suggestion, for a whole constellation of symptoms (as the doctors said) consistent with autoimmune disease.  She was not a textbook case of anything.  All the easy diagnoses that could explain weight loss — thyroid disease, refractory sprue, brain tumor — had been ruled out.

But the teeny tiny woman was also desperate to know why she seemed to be wasting away.  She was afraid she might someday waste away altogether.  Being the mother of three young children, the teeny tiny woman felt strongly that this would be a bad outcome.

So the teeny tiny woman gathered her strength (what little she had), her courage (what little she had), and her medical records (the whole two-foot stack of them), and went to the World Famous Medical Clinic.  She felt sure that the Best Doctors In The World, the Clinic Of Last Resort, would be able to help her.

The teeny tiny woman will spare you all the gory details of her experience at the World Famous Medical Clinic.  She thinks all you need to know is this: (1) They foisted her off on all the eating disorder doctors; (2) She left with this diagnosis: “Sometimes women just get these vague symptoms;” and (3) They later wrote a letter to her insurance company stating that the teeny tiny woman had not been truthful in the information she gave the doctors in clinical exam.  In other words, the Best Doctors In The World also couldn’t find what was wrong, and didn’t believe her story.  Then they went the extra mile by calling her a liar, and making sure her insurance company wouldn’t pay for all the fancy tests they ordered.  Luckily for the teeny tiny woman, she had asked them to send the letter to her home, and thus the insurance company never saw it; so they did pay for some of the fancy tests.

It turns out that one of the very big problems in the treatment of this whole constellation of symptoms was actually a very small problem.  A very, very small problem.  A Teeny Tiny Problem.  That being: the teeny tiny woman, due to a data entry error at the doctor’s office, was getting only a teeny tiny fraction of the medication intended to manage the constellation.

The teeny tiny woman discovered this only because of luck, when her doctor asked, several months into the prescription, “What day of the week do you get your shot?”  To which the teeny tiny woman replied, “The dose on the prescription label says ‘once a month.’ I get it on the 22nd of each month.”  To which the doctor replied, “Oh, that’s a mistake. You should be getting it once a week.”

And now for the good news:

Since the medication error was fixed, the teeny tiny woman is not so teeny tiny anymore. She is thickening.   She is returning to her very peasant-like shape.   She is growing out of her clothes.  (Despite this, she does still get stopped in public by complete strangers who say “You’re just a little peanut, aren’t you?”  And the teeny tiny woman still doesn’t know how to respond to that.)

The teeny-tiny woman would like you to know that there are are two morals to this story.

The first is to love your extra 5 or 10 pounds like they are your best friend.  Indeed, they are your best friend.  Remember Tevye from Fiddler on the Roof singing, I’d see my wife, my Golde, looking like a rich man’s wife with a proper double-chin (which reminds me, I’ve been meaning to do a post called Everything I Need to Know I Learned from Tevye).  Your extra 5 or 10 will protect you from cold; they are your cushion lest you become ill; they make your hugs soft and cushy (The teeny tiny woman pauses here to remember AJ saying, “Mom, I wish your hugs were soft and cushy like Grandma’s.”).  They are a sign of plenty: the gift of having enough to eat.  They are a sign that you are healthy, that your body has what it needs, and yes, just a little bit more.  Love. Them.

(The teeny tiny woman admits she may soon be taking a slice of her own advice).

The second moral is this: always ask your doctor the name, dose, and frequency of the medication s/he is prescribing.  If s/he gets annoyed and says, “Don’t worry about that. I’ll just fax it straight to the pharmacy,” do not say, “Okay,” like the teeny tiny woman did.  Instead, say “I would like to have that information so that I’m sure I get the right thing at the pharmacy.”

The teeny tiny woman, feeling quite fortunate and much healthier than she was two years ago, is signing off now, but first wants to wish you health, prosperity, an extra 5 or 10 pounds, and a long, happy life.

And she wants to assure you that, yes, she has a new doctor.

L’chaim!

8 comments:

drew myron said...

Wow, that's a powerful, horrible story with, fortunately, a positive ending.

I'm happy to hear you are on the mend, Molly, but disheartened by the medical maze you endured.

(On another note, Molly, thanks so much for the poetry books. What a pleasant surprise. thank you!)

- drew

Molly said...

Thanks, Drew - and thanks for stopping by. My medical maze is, I'm sure, only one of millions. The books are from a local poetry collective near my home - hope you enjoy.

CitricSugar said...

I am also leaving tiny land, though I never visited teeny tiny land, and have sighed at every suggestion to "eat something, will you?" while my family laughed because they knew the grocery bills to feed me were enormous and had watched while I devoured everything in sight and was still hungry...

Pleased at your less-teeniness. Wishing you plumpness!! :-)

Molly said...

CS - so nice to know of others who can relate. It used to make me crazy when the docs would say, "Eat more and exercise less."

Ms. WK said...

To life! (thanks for the ear worm at 10:30 at night... better than the Wiggles, I guess.)

My blood pressure started going up as I read and relived the 2 years ago bit... and then, I sighed, and reminded myself that health is a continum and we are NEVER giving up on yours.
Thanks for the constant perspective on the 5-10 extras...

Molly said...

Ms W-K, thanks for the "we" and the "NEVER" in "we are NEVER giving up on yours."

Gerry said...

This was a great post. So many people are sure the problems of our schools could be solved if only we got rid of "bad teachers." I wonder why there is no comparable outcry over indifferent doctors? Ah well. I congratulate you on every single incremental victory, and I gave my ample self a little hug of appreciation.

Molly said...

Gerry, thank you. Incremental victories are so important for those of us living with chronic illness.