CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
After two years without treatment, I had an appointment at 1:30 this past Tuesday to meet with a new rheumatologist regarding my SLE. That is to say, I was supposed to have such an appointment. I was scheduled for such an appointment. But it didn’t take place, because the doctor’s assistant called at 9:30 that morning to tell me that my case was “too complex,” that he was “out of his depth,” and that I should call someone else.
Isn’t that what we used to say when we were kids? Call somebody who cares!
This particular physician has been a board-certified rheumatologist for 34 years, so I’m pretty sure he was qualified to shake my hand, ask me my symptoms, and order some bloodwork. If tests revealed that I needed to be sent on to a more specialized practice in a bigger city, so be it—send my chart on, make a phone call so I’m seen quickly. Do not have your assistant wake me up out of bed to tell me that you’re canceling my same-day appointment because I’m not an easy fix.
It was news to me that a doctor would refuse to take a case because a person was too sick. I’ve never been to a vet who said, “Actually, your dog looks like hell. I’m not going to examine her.” I’ve never been to a dentist who said, “I looked at your x-rays and your mouth is a mess. Find somebody else.” I’ve heard of oncologists saying that there is nothing more they can do medically, or of surgeons saying that a tumor is inoperable—but in my experience, they send you on. They say they’ll keep you comfortable; they give you information about or contact hospice programs. They don’t say call somebody who cares.
My first step was to alert all my loved ones by Facebook, Twitter and text message that the appointment wasn’t going to happen. My next was to cry all day. I cried—from full-on sobbing to leaking eyes and back again—for eleven hours. I thought a lot about my kids. I wondered if I was dying. There are a lot of treatments they haven’t tried—in fact, I’ve only tried high-dose steroid treatment. There’s methotrexate, and Benlysta, and something called Remicade I haven’t researched. There are things that could be done if I had a doctor who would do them—but I wondered, on Tuesday afternoon, if that doctor knew something I didn’t. I was miserable and angry and hopeless, and I wanted to be left alone.
“What did you post on Facebook?” texted a friend. “I just got my third text message asking if somebody could do anything to help you find a doctor.”
Facebook comments and text messages and emails poured in. Go to Boston, they said. I am too exhausted to go to the grocery store, I replied, I can’t just up and go to Boston. They said We’ll drive you. They said Don’t give up.
I petulantly asked my friend Charlie when it was OK to give up. He patiently and lovingly told me that we could revisit that question after I’ve exhausted treatment options, and pointed out that my condition is extremely treatable once doctors are found. Until I’ve tried everything there is, I’ve got to keep plugging away.
Now, I hate it when Charlie is right. But I was forced to see the sense in what he was saying. So I called my PCP and made an appointment for this afternoon. As a result, he is going to see if Mass General or Dartmouth will see me, and I have orders for some preliminary bloodwork and an x-ray in the meantime. He was surprised when I said I was still looking for a rheumatologist—“You still haven’t gotten in?”—and more surprised, I think, when I said that I had been declined an appointment with Tuesday’s rheumatologist.
“His assistant said she had called this office,” I said.
Clicking through the notes in my computerized file, he saw that while that office had not called, his referrals person had called them after I left a hysterical, sobbing message. And yes, the referrals person had noted that the office person “stated that the dr was recommending patient be seen somewhere else.”
How do I feel today? Exhausted. Depressed. Beaten. And I’m still in the middle of a lupus flare. But I have a lot of Twitter mentions and Facebook messages and phone calls that say I’ve got to hang in. Plus, I have (as of Monday) a first grader and a third grader to care for, and my beloved stepdaughter graduates from high school tomorrow.
Thanks to every one of you for helping me hang in—for being someone who cares.