My trip to the PsA research clinic last week was both very ordinary and totally extraordinary. You know how it goes: check in with the receptionist. Read the magazines. See the rheumatologist (a different one this time, as mine was off for some reason). Get your fingers and toes twiddled, your range of motion measured, and the “how are you feeling” thing discussed. You’ve got that t-shirt too!
But at a research clinic, there are a few other hoops to jump through. (LOL, as if I could jump to a conclusion, let alone through a hoop!) There’s the intake questionnaire which I complete each time, about my daily functioning and my pain levels. At my last visit, I signed more papers than required for a mortgage so that they could take my DNA for research. (They drew so much blood I thought I’d need to be transfused!) And this time, the rheumatologist did The Questionnaire with me: hundreds of questions about my medical history and what I knew of my family’s history. The research part isn’t for my benefit, of course. It probably isn’t for you either. It’s more likely to be for the next generations of people who find themselves in bed with this dastardly disease. I love the idea of the research thing: at least I have the feeling that something good may come out of my having PsA.
All of that was pretty routine and pretty ordinary. The rheumatologists (I get two at each visit, a clinical person and then one of the two chief researchers) decided that I should just continue as I am with Enbrel. Pretty anti-climactic, really, considering the six-hours-each-way journey and an overnight in a hotel. I do know, though, that I am in the best hands.
And then, then at the very end of the consult, came the healing words. The gesture that lightened my heart. The assurance that made my stress disappear like fog in the sun. One of our friends here at LWPsA shared that lovely verse, Proverbs 17:22, with me the other day: “A cheerful heart is good medicine …” . And those final moments at the clinic made this PsA-battered heart cheerful. The rheumatologists told me to call them if I had any problems or worries. They meant it. They repeated it a second time. And on his way out, the chief researcher gently touched my shoulder as he took my hand, and he said, “Remember, call us.”
Any doctor in any clinic could say that. But this doctor did. And, for me, that was very good medicine indeed.
Sounds like you have a great team working with you ;-)
My rheumy also gave me his direct number, cell, and his email address. Told me not to hesitate to call or email if I had any problems or questions and I could tell he meant it. I had a med change, not to long ago, by my pcp, and it caused me to have insomnia for over a month. My pcp would not answer my calls or call me back, and my pain was very much out of control during all of this. Not only did my rheumy call me back, but gave me a few suggestions and recommended I find a new pcp. I have my followup with the rheumy this week, and ill be happy to tell him i have an appt with a new pcp later this month ;-)
I wonder if the change in attitudes by the dr's along with the great deal of care and attention you and I are getting comes from not being in typical practice. You are with the research clinic and I am with a teaching hospital.
Then you know about what a good feeling it is to have a doctor who doesn’t leave you feeling stranded! I’m wondering what you said about teaching hospitals and atypical practices. The research clinic is part of a large teaching hospital, and the researchers are profs of medicine. Must make a difference. And come to think of it, my ortho (whom I worship) is also an asst. prof at a large teaching hospital. Note to self …
I certainly do know about the good feeling from some dr's and the abandonment feeling from others. My family see's several specialist's with this particular learning hospital. So far all of the physicians with this particular hospital is the same. They all go above and beyond what you can even imagine with a "normal" practice. Yes, its quite a drive for us, but the care we get more than makes up for it ;-)
That’s the best feeling, isn’t it? You feel so comforted by knowing someone cares. After I had seen my rheumatologist a couple of times and I’d had blood work, MRI, X-rays and so forth, I got a phone call which registered his office number. I figured the nurse was calling about scripts which had been sent to the pharmacy. I nearly dropped the phone because it was the rheumatologist. He was “just calling” about the tests. He wanted to let me know all my tests were normal which, although that sounds great, could feel confusing because then what’s wrong with me. So he wanted me to be reassured that while nothing came up on the tests he still was convinced of my DX and took my pain and concerns very seriously but was heartened that I showed no joint damage etc. etc. I listened, thanked him profusely for calling, hung up and burst into tears. Never had a physician called me before. That one phone call took away so much anxiety
