Shock and Awe

I waited as long as I possibly could before getting a new doctor here in Houston. Call me crazy, but I absolutely loathe going to see a doctor when there isn’t a pressing issue to tend to. If I am in reasonably good health, I’m only thinking about the fact that I have an incurable disease 30-40 times per day, so I don’t want to make an appointment to rehash my history and discuss my health unless I am feeling ill. Making an appointment increases those thoughts to about 100 per day leading up to the day I have a visit scheduled, and the whole day is mentally exhausting. Especially when you’re starting over with a new office.

Like most medications, the one I take to stay alive and functioning requires regular blood work. The medication can cause a slew of problems, including kidney and liver failure, so checking those functions is important. I offer to do those tests plus any extras my doctor would like if I can only do a virtual check-in or no check in at all. Alas, with a new doctor, that isn’t an option.

For those of you who don’t often see specialists, you should know that seeing the actual doctor is very rare. If you want to see the MD you will probably wait a few months for that appointment, and I find the PAs have better bedside manner in general, so I’m fine with seeing an understudy if it means I can get it out of the way in a reasonable amount of time. I usually don’t have time to waste because I have procrastinated until the very last minute to get the appointment done and can’t wait around for the doctor to be available.

I have a lengthy medical history for a woman of 38, and I find there are two types of nurse practitioners and physician assistants when it comes to an intake appointment – the kind who are thrilled you actually know the names and doses of your meds, and the kind who find your knowledge obnoxious or threatening.

A lot of people who visit the gastroenterologist are elderly. Let’s face it, my Hyundai stands out among the Buicks and handicap vans in the parking lot. Many older patients have their care handled by a relative or rely on the medical staff to keep track of their medications and diagnoses. I am sure it’s frustrating to do an intake appointment with someone who doesn’t know the names of their medication or how much they take, let alone the details of their diagnoses. My goal, after countless appointments over the last twenty years, is always to save the staff time. Offices get behind every day, and it will take longer if they have to look up every medication I think I remember taking and guess how much I need and how often I need it. This also saves my time, as I am trying to get in and out as fast as possible.

At this point, I go in with memorized specifics that I can rattle off. I find that I get a couple stunned blinks from whomever is tasked with recording my life story, and then a “this is great!” or “you are so prepared!” Yes, I am a first born child, give me a gold star and an A+, and please know I’m also trying to slow my pulse and blood pressure to that of an Olympic athlete for extra credit.

There are some professionals, however, that find a patient with even a moderate level of knowledge about their own health to be a problem. Unfortunately, that was my experience at the new office. At least at first. I know the drill – you need to get patients in the door because there is no money in incurable disease. See us regularly, insist on preventative care and procedures (expensive and uncomfortable but, for us, necessary), and make sure the medications you prescribe don’t accidentally kill us. So, when a PA asks “what brings you in today?” I can confidently say, “I was diagnosed with Crohn’s Disease in 2008, I have been on 40mg of Humira every two weeks for 7 years, and my prescription is expired. I recently relocated and need to establish care, update blood work, and get a new prior-authorization for my insurance. My medical records are being faxed over right now.”

Usually, this is enough info to get started, and I’m obviously not a doctor, so I am prepared to answer any questions or perform any tasks required of me that I haven’t thought of in the moment. Every once in a while, you get a PA who likes to tell you how it is rather than work with you, and at my recent visit, she cut me off with a, “whoa whoa whoa, we don’t just hand out Humira.” Right. Like I said. Medical records, blood work, intake, further testing, etc. Go bananas.

But they must also know that I need that medication to stay out of the hospital, and the attitude is totally unnecessary, like I should be grateful to have it prescribed to me. I am grateful it exists so that I can live a mostly normal life, but I don’t feel that I should have to kiss the ring to get it. Care should be collaborative, in my opinion. I am a sick person and I need an expert, but I have done my best to become an expert on my own condition and my own history to better assist you in whatever decisions you’ll make about my care.

So, once this woman med-splained my disease and medication to me as I smiled obediently, she started to suggest my new doctor would not accept any testing from an old office, meaning I would need a CT scan, upper endoscopy, and colonoscopy before he would agree to prescribe my medication. These tests are not performed by your doctor, the results are not interpreted by your doctor, and yet, they often make a big stink about accepting the tests from another office. As if, in the rorschach slides of my insides, the third party radiologist from El Paso or Austin or Minneapolis might not perform to the standards of the third party radiologist in Tomball. In my experience, doctors will admit when pressed that they haven’t actually seen the scans from CT, MRI or follow-through x-rays, they just rely on the write up. That’s fine, but if it’s fairly recent, don’t pretend you just don’t trust other offices. You aren’t even doing the diagnosing, you are reading the same results I read. The scopes have photos and biopsy slides, so you’re seeing what my old doctor saw, too.

Anyway, I pushed back calmly and respectfully, and she went to check with her boss, the doctor, who confirmed my tests were plenty recent and would be acceptable. Since she wasn’t allowed the satisfaction of a mic drop moment where she sent me to get all manner of invasive tests, she took another route. I felt we were wrapping up and I thanked her for her time, promising to go immediately to get my blood work done and retrieve any other records she might need, and she decided to throw in some little disease-shaming tidbits. “Okay, you’re going to do the blood tests, but…do you get your eyes checked every year? Because Crohn’s will surely manifest in your eyes.” I get my eyes checked regularly (for the same reason I go to the gastroenterologist – I want a prescription for contacts and those expire). “Well, you need to tell the doctor what disease you have so they can look extra carefully.” Alright. “And surely you know about the skin cancer?” Um. Pardon me? “You are at a huge risk. Make sure your dermatologist knows what you have. She will need to look you over again right away.”

There are things you need to know to maintain your health, and there are things a person wants to shock you with because she hasn’t made a significant enough impression thus far. I know Crohn’s can manifest in eyes and skin, but I was afraid what other horrible predictions she’d make if I admitted to that, given her smug eyebrow raise when she dropped those “bombs” on me. “Keep an eye on these things” has a very different vibe than “you will have these serious issues” and it seemed deliberately hysterical to insist I would have a symptom I don’t yet suffer from. Is it boring? Less lucrative? Stale to a have a patient in remission? Like she was begging for a problem, insisting I needed her help, when I know I will at some point but I just wanted to celebrate an uncomplicated appointment for once? Not even here is all the stuff that could happen to you but instead an alarmist you seem too happy, so here are things that will certainly damage your life very soon.

I get that working in a gastroenterologist’s office can get tedious. There are so many different diagnoses to be had, but everyone is coming in with some version of “my tummy hurts.” It’s got to be a slog. But let’s not spice it up by doing a drive-by spray of doom and gloom as you wrap up an otherwise run-of-the-mill appointment. I have a disease that will never go away, I have exorbitantly expensive medication I’ll need to take for life, I have invasive testing on a yearly basis, I really don’t need any extra stuff. I will happily accept “remember to wear sunscreen because you are sensitive” over “tell your doctor about your disease so she knows you’ll get skin cancer.” Keep me healthy, not afraid.

I won’t be switching doctors again, because I can handle a little hysteria and finding someone new and doing this all over again sounds about as fun as my looming colonoscopy. Plus, I know at least the doctor is reasonable, even if this one PA is a little dicey. I will eventually need testing, but not as a hurdle to life-saving medication when my last tests are still considered recent. A doctor is only as good as his/her office staff, so you take the good with the bad. I’ve had wonderful doctors with absolutely atrocious front desk staff. I’ve had awful doctors who have amazing PAs, and that’s who I see 90% of the time anyway, so I can deal with that. This doctor has multiple PAs, so may the odds be ever in my favor when it comes time to book another excruciating appointment.