Monday, May 20, 2013

Why Rapport Helps

I have heard people, often doctors, say good bedside manner isn't important as long as the patient is receiving a high standard of care. Most patients would call bullshit.

This is how I feel about rapport:

I have a "support network." No, it's not my multiple pairs of Spanx supporting my network of pregnancy-related markings so I don't look like a slob in dress pants. It's that cheesy phrase for saying someone has people to help them when life goes to shit.

In my week, I interact with my husband, in-laws (who babysit), at least a friend or two, classmates, teachers, church people, and clergy. I'm around people enough that I feel the need to take multiple breaks from them.

So doctor, I am not trying to be your friend. While I hope your sense of well-being is sufficient, I can't say I want to help you in that arena in your life. I'm not interested in starting up any conversations on my kid's penchant for Caillou and her absurd stuffed animal collection. My cats are fine and even have their own doctor. Did you know I keep fish? No? Exactly, it's because I don't care to talk to you about it. And so forth.

What I enjoy, doctor-person, is:

1. Give me one to two minutes to state my problem.
2. You take five minutes to go through a "decision tree" of potential causes, decision tree being asking me questions while poking at body parts as needed.
3. You take two minutes to say what you think and give instructions on dealing with the problem.
4. You use a polite tone and keep scowling to a minimum - I'm not even talking friendly, here.

And in my particular case:

5. Don't blame it on the autoimmune or psych disorders, because I've already called those people up and they told me to call you because there is no way my immune system and brain could fabricate whatever "that" is.

Female doctors are usually the masters at brief decision-tree appointments. I say doctors in particular because I've noticed it's female doctors who do this and not female nurses (Haven't spent much time with physician assistants or male nurses, so I'm unaware of their styles).

This is what some female nurses do:

1. Prompt me to ramble until I hit on some information they're looking for. This could take a long time if my problem isn't autoimmune or psych related, since I'm familiar enough with those issues at this point I have a sense on when something is especially weird.
2. Be warm and friendly.
3. Something empowering/validating.
4. Poke, ask a few questions, tell me what's wrong, and then stand firm by it (sometimes with minimal input from me).

I think a lot of people like the female nurse approach, and there isn't anything wrong with it. Thing is, I don't need my pain emotionally validated (outside of psych-things). Doctor and nurse-persons, we all know shit like pink-eye, strep throat, mystery weight gain, and chest pain are sucktastic. Just try fix it, and be matter-of-fact without the spectrum of Sea Lamprey through Build-A-Bear bedside manner (Though you might want the Bear Bedside Manner in pediatrics).

I recently went to see an ophthalmologist because my eyes were swollen and bloodshot for reasons unbeknownst to me. I was terrified to go in because I didn't want to get yelled at or blown-off. I made myself go in because rheumatoid arthritis can affect your eyes, and I also didn't want to look hungover on my first day back to school. It was minor - allergies, but I was given eye drops that made my eyes look normal and not like I had just come back from a funeral. The doctor and I had a good laugh on the dart game that is rheumatology, he said the eyes weren't being affected by my issues, was all around pleasant if odd. The appointment didn't take forever, and I was able to go to dinner later and not feel like I looked depressed when I wasn't.

I have been blown-off by enough medical folks that I am at a point where I'd rather ignore it unless it's extremely impairing. The problem with that is extremely impairing things don't necessarily start off as extremely impairing. But those of us who are sick of being scowled at - and paying copays to boot - start to stay home. That's kind of a problem when you have multiple conditions that are progressive.

We all want to be heard. For me, decision-tree doctoring shows you're trying to figure out what's wrong and you're being thorough about it. Doesn't take long, fairly painless, and it helps me trust you when you tell me I need to get more iron in my diet.

Tuesday, May 7, 2013

Swelling? Back Pain?

I hadn't had noticeable swelling until recently. I guess lack of swelling is a problem or something, since we don't have cool technology to determine whether or not one has arthritis in the absence of symptoms visible to the naked eye. Oh, wait, can't MRI's, ultrasound, and even x-rays later in the game show that sort of thing?

Okay, snark over. I went back to rheumatology nurse a few weeks ago, who said Sea Lamprey Rheumatologist was wrong on the "No, you're just coming in with pain" thing and it is indeed rheumatoid arthritis and the pain level has decreased with methotrexate use.

Oddly, my back pain (For which I was supposed to see primary care, and I did) has gotten better with using methotrexate. Part of the back pain was pain when pressing on my lower lumbar and sacral areas, and the back pain started prior to the rest of the joint pain. Hopefully it's better due to my gait not being off from inflamed ankles or something.

And about a week after I saw rheumatology nurse, my fingers completely swelled up. I pried my wedding rings off. The swelling has been in and out, but never completely gone. The skin over my knuckles looks deflated when the swelling goes down. My fingers don't hurt as much as they did prior to methotrexate. Not sure if the swelling is RA-related or not since I'm in less pain.


Saturday, May 4, 2013

It's my right/It's my responsibility

To cry,
To fear for the future,
To be angry,
To sleep if I'm tired,
To ask questions about treatment,
To have bad days,
To let my kid watch too much TV sometimes if I'm too tired,
To eat cereal for dinner,
To question research that demeans those diagnosed,
To make my husband vacuum,
To ignore the cure-all's and the one-up's,
To let myself be vulnerable,
To grieve,
To say I'm in pain,
To not allow people to pathologize my feelings,
and to fumble through making peace with this disease.


To ask for help,
To do things I enjoy,
To stay physically and emotionally healthy (Which is going to look different from how you stay healthy - FYI),
To validate your pain and your feelings like how I want mine to be validated,
To forgive people,
To allow you the same rights as me.

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. 

Sunday, March 24, 2013

Referral Request Rodeo

I ramble a lot. My asides are in italics. They're long ass asides.

I see a nurse practitioner at a rheumatologist's office. I go to that office because my (former) primary care physician referred me there. It was a grand total of six months from start of hand-wrist-elbow-knee-ankle-foot pain to first rheumatology visit, and I was happy to see someone because pain in ten types of joints really sucks.

We've had four appointments together, and I am seeking a second opinion. I have difficulty communicating with her: processing what she says to me takes twice as long as what it should, and she appears to think I'm being flippant about the risks of DMARDs. I think. She's a little difficult to follow. I do know I don't agree with some of her thoughts on treatment, like her desire to have me avoid DMARDs and chew on NSAIDs with misoprostol (lithium interaction? disease progression?), which is a great reason to get a second opinion.

The last time I saw my (current) primary care physician, he said he would refer me to a different office if I was having difficulty with my current rheumatology office. I saw him because current rheumatology office told me to go to the primary care office for the back issue I had prior to getting the rheumatology referral, because I was not referred to the rheumatology office for my back issue. I had called the rheumatology office to tell them the steroid I was given helped my back, and I wanted to keep that awesomeness going, which is how this mess started.

Primary care doctor said he wasn't sure if the back issue was autoimmune-related or not, so I really need to see a rheumatologist about it. My back pain started prior to the other joint issues, and there is a chance my immune system decided to snack on my sacroiliac region before stopping by the hands en route to my elbows, knees, and feet. Primary care doctor, who is a first year resident, straight up admitted he didn't know a lot about autoimmune disorders. I like a man who can admit when he has no clue. His cuteness is a bonus.

I received a letter in the mail from my primary care physician's office. I was referred to my current rheumatology office with the time and date of the follow-up appointment that I set a month ago at my last visit printed neatly on the waste of postage that was the letter.

My husband said he hasn't seen me that pissed off in a long time. Even my typical speech doesn't include that many f-bombs. My disdain for this rheumatology office is higher than that of green eggs and ham. And I'm a vegetarian and rarely eat anything with food coloring.

The nurse at the primary care physician's office was very nice and helpful. She said the doctor referred me to a specific rheumatologist rather a practice, and his address was that of the current rheumatology office. I explained that the doctor no longer works within that health system and now is in an independent office (no small feat in my town), and his address is [insert address]. She promised to get it through and told me which number to push to reach her or the other triage nurse who would know what was going on.

While most of what I've learned in counseling could have been gleaned from a trip to the public library rather than several class hours and thousands in debt, I did learn the art of getting my way, and I would not have been able to pick that up on my own. I play into people's socioeconomic, gender, and racial biases. My primary care and psychiatrist offices were chosen because they're used to treating people with multiple issues who receive Medicaid, but still get enough funding to function efficiently and keep providers from getting too burned out. These providers seem to find me easy to relate to - dominant race, educated, private insurance, middle-class. My psychiatrist and I have had a few conversations on NPR programs, and he seems to be full of bizarre factoids about the neurological system. The outfits I select for appointments are stylish, casual, but obviously for comfort - no buttons, nothing too tight, no jewelry outside of my wedding set. If I'm feeling bad, but not so bad I'm thinking about suicide, I might bring my preschool age daughter. She has ringlets and Elizabeth Taylor eyelashes. She's going to make me look like a cow. Which is fine, I'm happy she's pretty.

Okay, so taking my kid on appointments is usually the result of needing to see someone right now and not being able to find a babysitter. I don't spend too much time talking about my issues with her - right now I think being honest but not too detailed is best for her age. Still, cute kids are a nice touch.

I think I'll do a post on How To Win Friends and Manipulate People sometime.

Anyway, it took three phone calls to get the office to send the request to the right place. The nurse suggested I call the office where I'm being referred to make sure they received what they needed. I was left with the impression she went the extra mile on this one and got as far as she could, which was I appreciate. I called the hopefully new rheumatology office and was told they need my records from the old rheumatology office, and they do not request records for new patients. I called primary care office back and was told the current rheumatology office hadn't sent them any of my records (Uh, what happened to coordination of care?) and though they had access to my lab work due to having privileges at the hospital where I have my labs done, they can't release those records as they are not theirs.


At this point I get in my car and drive to the hospital so I could speak with someone from the records department. I was told I would be charged over a dollar per page if I requested the records to go to the new rheumatology office, but I would not be charged anything if the primary care office requested the records and then did whatever they wanted with them. It was recommended that I sign releases at the primary care office.

The journey continued to the other end of town, where I had to explain to the receptionist (who was pretty nice) in a few different ways that I needed their office to request records from one of the big two health systems and forward them on to the rheumatology office I want to see. I had to fill out the releases in a manner that did not make it look like I requested the records be released - I did that accidentally because I wanted some lab work sent to my psychiatrist, and I was stuck paying twelve bucks.

That's where I'm at now. Will call on Monday to see how things are coming along.

- Elisabeth