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.