Saturday, April 13, 2013

Bedside Manner of a Sea Lamprey

If you live near Lake Michigan, you've probably heard of the sea lamprey. For those of you who haven't heard of the sea lamprey, it's an ugly, invasive fish species that has several rows of teeth and bores into it's prey.

The rheumatologist I saw on Wednesday made sea lampreys look like pitiful kittens that just want to snuggle.

The person who set my appointment said they had the records they needed. I go on Wednesday, spend the usual half hour filling out paperwork (Ow!), wait a half hour on top of that (Urgh, but that happens, not a big deal), and then the doctor told me she didn't have the records needed. It was "a bunch of ER stuff." I went to the ER once and urgent care twice. The times spent at urgent care were about my back (why I was referred there) and my feet (during care with rheumatology nurse when I was told to get an x-ray somewhere because I thought there was something wrong with my ankle). Still, those three visits do not account for a half-inch thick stack of records. That I dropped off a week before. That were supposed to have been reviewed prior to my appointment being set.

Oh, and the eighty dollar bill I received for those records. An ER visit does not account for an eight dollar records bill.

I politely apologized for not reviewing them and said I had a difficult time obtaining them. The doctor asked me if I had my appendix removed, which I hadn't. Any surgeries, like gall bladder? Nope. She left the room, irritated. I asked her if I should have my medical records corrected, she shook her head.

She said she was a difficult position because I had already started treatment. I'm not sure if she looked at the paperwork I filled out. She didn't ask me much in terms of history. She asked a few questions - have I ever had psoriasis, something regarding ankylosing spondylitis, if my eyes and mouth were dry. Then did the press on potential fibromyalgia tender points and affected joints thing - harder on the fibromyalgia points than the joints. She was mostly interested in whether or not my hands had ever swelled, and told me repeatedly that inflammatory arthritis has swelling and she did not see swelling and thus it was unlikely that I had inflammatory arthritis. In a loud and irritated-sounding voice.

I asked her what would cause what I am experiencing. She said sometimes people have vague and non-specific joint and muscle pain and they don't know why. I asked her if there was anything at all that was neither inflammatory nor vague and non-specific. She said that sometimes people have vague and non-specific joint and muscle pain and they don't know why and did I understand, in a loud and irritated-sounding voice. She said she didn't want to give me a life-long diagnosis and be stuck going on medication after medication, finding no relief. There is nothing unreasonable about wanting to find a correct diagnosis and avoid trials of expensive drugs with shitty side effects. I can appreciate that, seriously.

But, uh, why have the arches of my feet fallen and my knuckles grown larger and I can feel tendons catching on bones and now I'm taking methotrexate and the pins and needles feelings in my feet and hands magically disappeared after a few weeks? Although the better question might be why three primary care physicians and the rheumatology nurse didn't bat an eyelash at the pins and needles issue, who knows what damage was going on there...


To summarize: the rheumatoid factor was elevated, but that doesn't mean anything; the fatigue could be anything; the muscle pain could be anything; and the joint pain is a mystery - because there is no swelling. But it should be monitored, because it is a mystery after all.

Honestly, I could give a shit less if I have whatever disorder. But I'm not going through years of spending hours on the phone and paying thousands in copayments to have people tell me it's vague and non-specific. I don't know how specific I have to be when I point to my toes, ankles, knees, elbows, wrists, and fingers and say they hurt. Absolutely not. This is ridiculous. Rheumatologists are throwing darts at a wall when it comes to this stuff. I'm all okay with darts at a wall - I worked in mental health, we're all about the darts while acting scientific so we can get our insurance and grant money. But for the love of all that is holy, pay attention to the data that is available. The guidelines changed in 2010, people.

There were things she said that were perfectly reasonable, but the fury was too much. I don't want my doctor to be my friend. I'm not interested in warm and fuzziness. Just don't want to be yelled at. 

Friday, April 5, 2013

Triple R: Limping Patient Kung Fu Glare

I think I fell off the bull at the Referral Records Rodeo.

The call from the records office at Gigantic Roman Catholic Health System (GRCHS) came. The records were packaged up and all I would need to do is tell the check-in desk at GRCHS hospital that I was picking up the already packaged up records.

I drove to GRCHS hospital and told the check-in desk that I was picking up the already packaged up records and the records department said to come to the check-in desk. The receptionist called the records people, who said to go to outside the booth and wait.

There was an employee in the booth with a customer, and they were there for awhile. The customer left and the employee was in the booth by herself. She left the room to get stuff off of a printer a few times, so I assumed my records weren't actually printed off given my luck. After twenty minutes, I poked my head in and said I needed to go soon.

She looked surprised and apologetic. There was a breakdown in communication somewhere, and she did not know I was there to pick up records. She actually looked pretty surprised, so either she's a good actress or she truly had no idea I was supposed to be there. She found the half-inch thick pile of records and had me sign something that said they would be sending me a bill. I mentioned why I was requesting everything from the last 18 months and my frustration and blah blah. I made it a point to sound conversational - it's not her fault GRCHS decided to charge patients for requesting records, you know? I thought it was worth saying something, at least, because if enough people complain and all that.

GRCHS hospital is twenty minutes away from new rheumatology place. New rheumatology place is a large and fancy building. The inside is also large and fancy. I gave the records to the receptionist and explained I was referred but my doctor's office did not send the records even though blah blah. She found the referral form, took the records, and said they're reviewed daily and I should get a decision within two days.

I said thanks and went back to my car.



What is there to decide?

If I'm sick/interesting/young/old/can pay enough?


I didn't sleep well that night. I don't want to go back to rheumatology nurse. There are three rheumatology offices in this county. I didn't want to have to drive an hour or more if I could help it.

And then my head spun a little further - is this pain fabricated? My psychiatrist said it wasn't. Joint pain in specific joints with a sudden onset isn't in the Somatoform Disorders section of the DSM-IV-TR. Especially since I didn't know what rheumatoid arthritis was prior to all of this.

No answer the next day. Further spinning.

This afternoon I was in and out of sleep from Thorazine. I threw up seven or eight times in a three hour period. I called the husband home. I take lithium, so getting dehydrated is bad news. Primary care doc told me to take the Thorazine (prescribed by psychiatrist for sleep and nausea from lithium + pain) I had and call if I couldn't keep it down.

Yay, my shitty issues affecting my family.

In a sleepy period, the new rheumatology office called to set an appointment. One to two hours this upcoming Wednesday.

Uh, they got me in in less than a week? I waited two months to get a doctor to listen to me enough to give me a referral to a place with a four month waiting list.

Less than a week?

Less than a week!

My husband said not to over-think it, and be happy I won't have to see weird nurse again.


Tuesday, April 2, 2013

Records Rodeo: Here's the Sequel. Let's Hope It's Not a Saga.

I called up the hopefully new rheumatology office to see if primary care office had sent them my old primary care and current rheumatology records. They had not received them. So I called up primary care office. The person I spoke with on the phone sounded confused.

Screw the dollar a page Gigantic Roman Catholic Health System (GRCHS) charges patients who are trying to get records for their doctors, I'll get my own damn records and maybe refuse to pay for them because the charge will be around a hundred bucks and I had to buy new orthopedic shoes two days ago which means I am low on cash.

I drive down to GRCHS hospital to speak with someone in the records department. I told her what I needed, she wrote it down, she took my number, she said it should be good to go tomorrow.

Not a word from the GRCHS records office this morning, so I give them a ring to see if my request was done. The person in the records department said there was nothing in the computer about me requesting records the day before. She said she would ask around the office. She found the note that was written, said no one had known about it so the records hadn't been printed, took my phone number, said it would be good to go tomorrow.

Primary care doctor did the referal five weeks ago.



First primary care office couldn't get the address correct for new rheumatologist office and I was "referred" to current rheumatology office that I am trying to leave. There are about 250,000-ish people living in my county. There are about seven rheumatologists in my county who treat adults. All of them have current addresses on the Blue Cross (my insurance) provider look-up, the American College of Rheumatology website, and Google. I had to to say, "Use this address, 'blah number blah road" because the address in their database changed a year ago and someone just wasn't getting it.

Then GRCHS didn't send any records over when I moved primary care offices much less the rheumatology records after each rheumatology visit. I thought I had to sign releases for primary care so primary care could help me sift through this crap?   

And for the love of all that is holy, is it that hard to understand and remember to obtain records to be given to some sort of entity? I mean, GRCHS has all of my stuff electronically - it's literally clicking some buttons and hitting print. I've seen them do it. Click. Print. Why, oh why.

Not that new rheumatology office is going to get off easy - I can't sign a release so you can request records from a place that is a twenty minute drive away? A place where you have hospital privileges? A place with obscene charges for records I'm sure you know about? 

If someone doesn't have my records ready tomorrow, I'm going to start asking for supervisors. Records confusion is an asinine reason for being unable to make an appointment at a rheumatologist's office.