Sunday, November 16, 2008

Fixodent and forget it: lessons from a denture commercial

In 2002, I had a major health fiasco- and had no insurance. I had lost my insurance after being fired from my job for being sick. So I went to a teaching hospital, where they took indigent patients (indigent= no money. Not to be confused with indigenous, which is "native people," such as Aborigines or Native American Indians. Although I was born in a hospital, so I guess I was indigenous as well...)

You're not allowed to walk around much in the hospital. Which is quite torturous when you're hopped up on prednisone and want to jump out of your skin. Which, come to think of it, is probably why the windows in hospitals don't open. I entered the hospital shuffling in with a cane and left in a wheelchair. After 8 days of lying in bed, my legs were completely atrophied. Of course, this happens to astronauts too, so I was in good company.

So, after having the physical therapist put a leash around my waist and remind me how to walk for future attempts, I was wheeled out, and my follow-up appointments with the kidney doctor were set at the indigent clinic (indigent= no money. Remember the no money no insurance thing- it's key to the next part of the story). Well the clinic sees all its patients on either Tuesday or Thursday. I was a Tuesday patient, and all of us indigents had the same appointment time: 9am. And it was first-come, first served, so we all showed up at 7:30am for a 9:00am appointment. At 9am, the would start calling us to get our weight and blood pressure, then back to the waiting room, all of us with kidney failure, all of us sitting there usually until noon before being seen, with the water draining down to our ankles as our legs swelled bigger by the hour. I already had feet so swollen I could only wear slippers.

The final insult was that every time I went, I had a different doctor. So every single time, I had to give my entire medical history and re-live all the bleak dark traumatic crap I was trying so hard to not think about, like a crime victim having to testify over and over. About the 3rd time, I had had enough. I brought in a 13-page typed medical history with all my illnesses, allergies, symptoms, surgeries, corresponding dates, and the names and addresses of all the doctors I could remember. I handed it to the new doc and he said "oh, no. I have to take it orally." And I said "Why? So you can pretend to have a rapport with me?" I mean it's not like he was going to be there next month, and it's not like the next doc was going to be able to read anything he wrote on my chart. Furthermore, when you're on 9 drugs, your memory is not exactly tack-sharp.

While my Mr. one-night-stand of a doctor wasn't interested in my hours of meticulous record compilation, I did create a valuable resource that other folks do find useful, especially alternative practitioners such as acupuncturists. A lot of us with chronic illnesses do keep a health file of our own, because if you move or go to several specialists, or both (like me- although I now have insurance and get to see the same doc every appointment, I've moved a *lot*, which means changing doctors a lot)... You really have to be the keeper of your own file.

Get copies of your labs if you can, and keep them. The HIPPA laws require doctors to give you copies of your file, though they are allowed to charge up to $2/ page for them. Doctors (even those who actually do have a rapport with you) routinely throw records away after 7 years, and then they are *gone.* And that leaves you in the position of having to re-live the crime all over again in agonizing detail.

When I was 6, we moved away for one year. In our new neighborhood, we had to walk a mile each way to school and back, and again at lunchtime. Every morning, my mom made me recite our address. To this day, I remember it, in the sing-songy way I used to play it back to Mom every morning. 390 32nd street, Boulder Colorado, 80303. I was very happy in Boulder, so having that address in my head brings back nothing but sweet memories. But I have no desire to have a sing-songy list of every health problem I've ever experienced rattling around in my consciousness like an never-ending nightmare. This is the real reason I made my health file, so that, in the words of the denture adhesive "Fixodent and forget it," I can write it down, get it out of my brain, and think about something else. Like 390 32nd street.

10 comments:

Gameguythinks said...

Carla - It took us a couple of years to realize how important it is to get copies of labs and to keep track of who gets copies of MRIs and such.

Every visit to the hospital is a new adventure in physician roulette for us as well.

Great post!

Carla Ulbrich, The Singing Patient said...

physician roulette! well said.
another thing on labs- the doc has so little time to spend at a visit that I want to look over the labs myself and compare them to the previous numbers to see if i'm getting better.

they all have a highlighted feature for numbers that are out of range and they tell you what normal range is, so you don't need to be a MC to get the big picture.

Disability Blogger said...

Health insurance is such an incredible issue. It was big several years ago and it will only get bigger as the country's average age goes up. I'm hoping that, if nothing else gets down, the incoming administration will revisit the idea of national health insurance. For those who say that we can't afford it, think of all the bailouts recently. Also, a federal alternative could provide excellent competition for private insurers and give incentive for reform. It's ridiculous that health insurance is tied to one employer. What if you lose your job, plan to go the self-employed route, and have a pre-existing. You're totally left in the cold.

Disability Blogger said...

meant to say "if nothing else gets done"

Carla Ulbrich, The Singing Patient said...

yes that is exactly how i ended up with no insurance. got fired for being sick (illegal). had Cobra for 18 months then couldn't get anything. Or work full-time.

This whole "we can't afford it" crap reminds me of one of my husband's friends. His wife wouldn't let him buy a mandolin- a musical outlet he desperately needs working in corporate America because they "couldn't afford it." Then she spent 10 times that on landscaping. Where are her priorities?

Anonymous said...

That is a very good point, to keep medical records of everything. I went out on my own just before I graduated high school. I was 18 and felt I could deal with everything. Since I moved out of the town I grew up in, I did actually request medical records from all the 24-hour clinics I went to (doctors have such cruddy hours). I have really great insurance, which is amazing, but co-pays add up quick. The $2/pg thing really bothers me though. I had to pay nearly $30 just to have my kidney info from ONE doctor. And then the new urologist BILLED me for sending them to him! Ahh!

Anonymous said...

You should have said, "fine. I'm only reading this outloud once. Please take notes carefully."

Whether or not the termination was illegal is kind of an attorney question because not every company is required to follow FMLA, sadly. Most states are right to work states and they can pretty much get rid of you for whatever reason they want.

My husband lost his job for being a whistle blower. Of course they said that's NOT why they fired him, but considering he was never late, never missed, and only complained when they sent on crappy parts....well - it was easy to put it together.

Carla Ulbrich, The Singing Patient said...

i was smartass enough to feel i responded with appropriate disdain, but i did let him force me into doing this his way, so yeah, that would be a great answer to have up my sleeve!

i'll probably move again several times in this lifetime and have to get a new rheum, so i'll be forearned and forearmed, just in case.

as t o the lawsuits, guess it doesn't matter anymore as this was 1993. and the company went out of business anyway. maybe karma got them. they also were guilty of gender discrimination to a degree that would be shocking to most folks living outside of north carolina.

eventually, it all comes down to deciding how you wish to be treated, and standing up for yourself. and if that doesn't work, walking away.

Marilyn said...

Carla, I just found your blog and I have to tell you, I absolutely love it. Your take on this disease is so refreshing. I was only diagnosed 7 months ago but already I look in the mirror and wonder, who the heck is staring back at me. Puffy prednisone face, thinning hair, facial rashes...give me a break, did I sign up for this and am I really putting all this crap (meds) in my body on purpose? I'm looking forward to many more great posts and significant reading from you.

I see you haven't posted in a couple of months....are you doing okay, if not, best of luck and get well soon!

Carla Ulbrich, The Singing Patient said...

Hi Marilyn!
thanks for commenting
i haven't been posting because i'm in the middle of writing a BOOK! whee! (and agh! the dealine looms!)

be well and i hope you get to cut back on the prednisone as soon as your flare calms down.

i'm having pretty good results from going gluten-free and doing 10 mintues of chi gung every day.

hugs-
carla