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.
