Saturday, September 7, 2013

Doctors from this Patient's Perspective

Yesterday I visited a rheumatologist my doctor recommended when I was in a small flare this summer.  I am feeling pretty great now, with only the occasional migraine and some neck issues left over from a car accident when I was young. For the most part I am able to exercise, and I have a lot of energy and wake up feeling good. This makes me very happy! Despite feeling good, my doctor agreed that it would be good to see the rheumatologist when I wasn't in crisis. The experience was night and day, and I think I've found a rheumatologist who I would be happy to work with, which is exciting.

My past experiences with doctors have not always been so pleasant. My first flare up was very frightening and lasted about two years. Why was I scared? I had no idea why my body seemed to be staging a full mutiny. I mean, all that what missing was the burned piece of paper with a black spot and a bunch of men with cutlasses. Or maybe the black spot could be subbed out for petechial rashes and the little men could be my angry immune cells. Add in vertigo and a limp from joint pain, and I even looked like I was walking on a pirate ship. If that wasn't bad enough, I had some doctors treat me like I was a nut case. With my overactive imagination and intensity, some people may agree that I'm weird and proud of it, but I'm not a hypochondriac. I avoid doctors unless something is happening that I can't ignore, and that is especially true after that first flare up.

When I was first flaring up, I remember sitting in a doctor's exam room talking to a nurse. She asked why I was there, so I gave her the long list of weird things that had been happening up to that point, starting with sudden, unexplained weight loss. That got a look up and down my frame and the following comment: "Are you eating?"

My answer: "As often as possible." I'm 5'6 and oddly look about 10 pounds lighter than I am (not that I'm complaining!).  My normal fighting weight is between 135 and 140. I was down to 112 pounds and dropping. I had to develop an avoidance of hats because my friends told me the reason people were extra nice to me when I had a hat on was because people thought I was undergoing chemo. My brother saw me for the first time in a few months around that time and burst into tears because he thought I was dying (Did I mention my complexion was gray, too?).

The nurse just looked at me, sniffed, and said she'd go get the doctor. By then I was feeling pretty self-conscious and wondering if the nurse had assumed I had an eating disorder. I had coworkers following me into the bathroom at work because they were worried I was bulimic, so that wasn't overly surprising (to this day, I chastise people for assuming someone has an eating disorder and point out that they could just be very ill). By the time the doctor came into the room, my confidence was shot. My regular doctor was off that week on vacation and having a hard time figuring out what was wrong with me.  The usual blood panels were coming back normal except for an abnormally low white blood cell count. The reason for my visit was I had remembered a paper I wrote in high school on systemic lupus erythematosus in dogs (the irony - I chose it because it looked really scary), and that sent me to WebMD to compare symptoms in humans.  I had so many of them!

First I listed off the symptoms I could remember: sores in my mouth and nose, petechial rashes, low grade fevers, Raynaud's, fatigue, vertigo, mental confusion, weight loss, joint pain, rashes from the sun (and many other strange things), hair loss, severe digestive issues, and the low white blood cell count. I voiced my fear to the doctor and she gave me the same up and down look the nurse did. "You can't possibly have lupus. You don't have the butterfly rash, and all lupus patients have that."

How could I argue with that? So I just asked, "What about other autoimmune?"

"Are you aware that depression physically hurts?" She gave me a rather condescending speech on depression while my mouth hung open dumbly and sent me off with a prescription for an antidepressant and a suggestion that I see a psychiatrist.

I was determined to figure out what was wrong with me and continued to go back to my normal doctor when new, weird symptoms would crop up or existing symptoms would worsen. No, I didn't take an antidepressant, although after a year of continuous decline in health, the medication probably would have helped with the depression I developed as a result of the fear and emotional trauma that comes with your body doing weird and frightening things without your permission. I have never seen the "depression doctor" again, and hope she was just having a bad day and has read more about lupus because she was obviously ill informed on the subject.

My regular doctor eventually did a rheumatology panel and discovered I had an abnormal ANA level and referred me to a rheumatologist. I never seem to do things the usual way. My RNA, sedimentation, inflammation, and C Reactive Proteins were all in the realms of normal at the time, so it would seem that lupus was unlikely. However, after x-rays showed inflammation in the joints I was complaining about and an analysis of all of the symptoms, including leukopenia, I was given my first tentative diagnosis of systemic lupus erythematosus because of the sheer number of organ systems involved. Since then, I have been solidly diagnosed (lucky me) by rheumatologists.

I have learned a lot since 2007. My biggest lesson was that it is OK to shop around a little when finding a doctor. It is critical to find doctors with a personality that fits with your own, who are curious and like a challenge, and who really listen. There are some great doctors out there who have shown me compassion, empathy, and patience. I have since switched my primary care over to a naturopath/nurse practitioner who is extremely thorough and has a wicked sense of humor. He is direct, no nonsense, and has experience with people who have health issues that are complicated. I liked him so much that the rest of my family is seeing him and have been really pleased. He has referred me to a couple of specialists because of strange health issues that cropped up, and I have been impressed with both of them. He referred me to people who share his curiosity and tenacity when trying to solve a problem.

My hope in sharing this long and somewhat rambling story is that just one doctor out there reads this and does some introspection. Trust goes both ways. It is hurtful when a patient is worried about their health and their concerns are brushed aside (even if they went to WebMD and are slightly annoying). There are many complicated health issues out there and doctors are expected by their patients to be experts in all of them. That isn't fair, but I do ask that doctors take the time to listen to their patients without making too many assumptions. I know that there is a saying out there that "patients lie" because symptoms are subjective and difficult to measure. That is understandable, but take the time to research the symptoms that can be physically confirmed. When I go to the doctor, I expect them to give me some trust.

When I saw the rheumatologist yesterday I walked away hopeful. It wasn't because I was independently diagnosed again, or found someone who had their residency at a lupus specialty clinic with hundreds of patients (although that certainly is a huge plus). It was because he gave me the scheduled hour to go over my symptom and medical history, was open minded about things like acupuncture and low dose naltrexone, and respected my input on whether or not I would like to start recommended medications. He was analytical and entirely reasonable. In turn, I agree to submit to any necessary testing and agreed that if my kidneys became involved or flare ups became less manageable or more frequent, I would trust his decisions around medication. My trust around medication is not easily earned, but he shared my dislike of steroids (even though we both agreed they were effective, and he does use them if kidneys are attacked by the disease, which I find very reasonable) and actually talked to me about Plaquenil and why he approves of the medication and finds it a safe option.

I knew I found someone I would happily work with when he said: "You know, I'm not surprised you haven't had the malar rash.  I've only seen that in a handful of the patients I've worked with who have systemic lupus."


1 comment:

  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

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