allocrappy

on my kitchen island is a big white binder.  in that big white binder are pages and pages and pages of bills.  $200 for a blood draw with lab work.  $1100 for a half-hour visit to my endocrinologist.  $500 for an ultrasound.  $500 for another ultrasound.  $500 for ANOTHER ultrasound.  and on and on and on.

and what do i have to show for it?  not much.

i do realize that my view of the healthcare system is skewed dramatically by two things:

1.  i don’t generally use it.  i usually answer the questions “who’s your PCP?” with “don’t have one.”  if i have a cold, i have a cold.  i use herbs or over the counter meds to get through.  i don’t dose a virus with antibiotics (??).  bladder infection?  cranberry pills.  ear infection?  garlic oil.  etc.
2. i have the great privilege of working in what’s considered to be “alternative” medicine.  i don’t have patients–i have clients.  i spend time with people, get to know them, help treat them mind, body, and soul.  call my phone?  i answer.

but i have to say that my foray into allopathic medicine has been less than satisfactory.  thank you for listening to my rant.  thank you for not pointing out that i’m repeating myself.

here’s a snapshot of my medical life right now.  i have to have some sort of imaging done before my surgery because my surgeon needs to know whether or not my thyroid extends behind my sternum (we won’t talk about what happens if it does–not ready for that thought yet.)  so:

one appointment was scheduled

then radiology called me a week later to confirm.

oh wait… you need a chest AND neck done, and you weigh 265 pounds? ok, we’ll have to book your scan at our scarborough office.

another call a week later.

scans are booked.  you’ll be having 2 MRIs back to back–a 2 hour of your chest and a 1 hour of your neck.  if you’re claustrophobic, you’ll need to get medication from your doctor.

ok, as long as i don’t have to raise my arms–i’ll pass out.

what do you mean you can’t put your arms over your head for an extended period?  we need to do that for imaging.  you’ll pass out because your thyroid cuts off circulation at your carotids when you raise your arms?  hmm, we didn’t know that.  also, you’ll be having a contrast IV.  

my surgeon told me specifically to ask for no contrast.

that’s not what our order says.

then perhaps you should call my surgeon?

no, you’ll need to call them and then have them call us.

(left a message with my surgeon.  they called back when i was in the bathroom.  called again and stayed on hold 45 minutes. got a human being.   human being transferred my call——-to a voicemail.)

surgeon’s office calls back.  precious and helpful but dotty old scheduler:

so what seems to be the problem dear?

(lengthy explanation of the situation)

ok, well we’ll fix that scheduling issue and the surgeon with reconfirm with radiology exactly what needs to be done.  (hangs up)

email sent to my doctor to request medication.

reply from doctor’s office:

we’ve changed your 3-hour MRI to a chest CT scan, so you won’t need medication.  please be here at 7 am on monday.

i sign in to mychart (online medical records) and yes, there’s the new appointment.

i sign in to mychart the next day.  appointment is gone.

i call my surgeon.

oh, that appointment was cancelled.

by whom?  why didn’t anyone call me??

oh i’m sorry dear.  something something new computer system something scheduling error something.

so do i still have my appointment?

no, it’s been cancelled dear, and i don’t see where it was ever changed to a CT scan.  perhaps you’re mistaken?

perhaps not.  when is it going to be rescheduled?

we will call you dear.

ok, but my surgery is in 2 and a half weeks and i ONLY HAVE NEXT WEEK OPEN for the scan.  the week after that is crazy at work and i won’t be able to leave.

ok dear.

so you will call me next week?

we’ll see what we can do dear.

***************

this is representative of every part  of my experience so far (except for my entry point with a fabulous nurse practitioner).  no one communicates well with anyone else.  i spend DAYS on hold.  orders are put in wrong.

i almost feel like i need a sharpie dotted line with the words “cut here” across my neck so i don’t wake up on the 21st with a goddamned amputated leg and hysterectomy.

medical mistakes are the third leading cause of death in the united states, and i have been given a first-hand look into how that can happen.  i’m very thankful that my MRI, no, CT, scan, no, ???  was just a procedure and not a medication.

“oh dear, we weren’t supposed to give her blood thinners before surgery, were we??? shoot.”

jesus wept.

*****************

i sent a message to my endocrinologist expressing concern over titration of levothyroxine, the medication i’ll have to take every day forever after having my thyroid out.

so this medication–everyone’s been very matter-of-fact oh-we-do-this-every-day very-safe-no-side-effects yada yada.  you’ll be fine.  life will be the same.

and then i find facebook groups full of *thousands* of people who have had complete thyroidectomies  with levothyroxine supplementation afterward, and they talk about hair falling out, crippling fatigue, chronic constipation, insomnia, brain fog.  same story over and over.

so i confront my endo about this, acknowledging frankly that my view is being skewed by the fact that the satisfied and healthy people with thyroidectomies don’t join support groups.  i ask for the facts.  i ask for good informed choice (a phrase that gives midwives a frisson of excitement and purpose).

she tells me that “who knows why these people are having these problems” and “it may not have anything to do with their surgeries” and i just need to look at the american thyroid association website. (i did.  it was devoid of qualitative information and contained little quantitative info either.  it didn’t even give me a “what to expect” before/during/after thyroidectomy.)

don’t trust people.  trust this glossy 3-page pamphlet.  it’s just the rest of your life.

i should acknowledge that i do know that i’m doing the right thing having this surgery. (yes jenny, even with iodine supplementation, the nodules continue to grow and choke off my vessels and esophagus. at least i tried!)  i can’t not have this surgery.  i’m starting to gag when i swallow pills, and sometimes when i’m doing nothing at all.  that’s more fun than a barrel of monkeys, let me tell you!  sleep is getting harder.

all i ask is for complete and realistic information.  and for a health care provider that actually seems to give a fuck about me.

i acknowledge that this all sounds very negative.  ranting helps me keep stress low (which, ironically enough, is something that the medical establishment, while causing ALL of my stress, tells me i need to do for good healing.)  thank you for listening.  you’re the best doctor i’ve had in this whole situation.

in the mean time, i’m going to continue to wait (with not-so-bated breath) for a response from my surgeon to my latest request.  i sent him journal studies showing that IV vitamin C before, during, and after major surgery dramatically reduced patient perception of pain and need for medication and sped the healing process in a very statistically significant way.  i’m waiting for a response that simply says “No.  -Dr. M” but i suppose i could be pleasantly surprised.

the online interface said that my practitioner would respond within 2 business days.  i sent it a week and a half ago.

to be continued…