more than a feeling


Photo by Chris Townsend via

The 30-day experiment: part the third! has come to an end, and I think rather a successful one. I did indeed write every day for 30 days and, as I suspected, I have a wealth of ideas for future posts.


Including this one. As I said before, I had my highly anticipated visit with my NP. I’ve been on the new treatment—Enbrel, Plaquenil and MTX, plus Omeprazole (Prilosec) and a stronger muscle relaxant to help me sleep—for a few days now, and what a difference it’s made already. I feel more like myself than I have in a long time. The brain fog has receded, my pain levels have dropped—albeit only from a seven to a five or so, but it’s certainly a start—and I’m sleeping better. I can concentrate on writing (necessary, as a journalist) and I just feel human again.

It’s a nice feeling.


D(r) day

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Today was my long-awaited trip to see my rheumatologist to find out if we could come up with some kind of plan to get me back on track. The Professor was with me, and he was very good at making sure I didn’t leave anything out—and if I did, he piped up. I definitely felt as though she heard me and understood how unlike myself I’ve been feeling.

The NP seemed shocked by how poorly I was doing when we ran down the list of symptoms: lots of pain, joint pain in new places (like my jaw, which pops all the dang time now), sleeping poorly, muscle pain, fatigue, brain fog, the weird (and likely) pleuritic chest pain…. It felt like the list went on and on. Both she and the student physician’s assistant with her gave me a full exam.

She decided to pull me off the sulfasalazine, but keep me on the methotrexate, the hydroxychloroquine (Plaquenil) and the NSAID. (She was flatly against the idea of Celebrex, which I suspected she would be. We’ll see how Dad takes it, though.) I’m back on the Enbrel, and she gave me a few samples to take home until I can get things straightened out with my insurance and the co-pay assistance program. Since Darvocet was taken off the market (and I wasn’t a huge fan, anyway), I’m going to give Percocet a try. If that doesn’t work, I’ll be on the Tylenol with Codeine, since I’m super sensitive to pain killers. She also suggested a steroid injection before I go up to Canada for the holidays, since it should help me get through the stress of driving up and driving back.

I’m hopeful this will work. I was certainly doing better while on Enbrel, and maybe in conjunction with the Yellow Dart and the Plaquenil, I’ll start feeling like myself again. Maybe I’ll even be able to pull my heels out of the closet again. That seems so far from where I am right now. But after that appointment, one phrase is back in my vocabulary: I hope.

another recall

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Right on the heels of the methotrexate recall from a few weeks ago, here’s another: The FDA pulled Darvon and Darvocet from the market. It is the most recent painkiller to be prescribed to me, but as it’s not one I took very often, it’s not the blow the MTX recall was. Still, it’s just one fewer weapon in my arsenal to fight the psoriatic arthritis.

It’s kind of scary that, after decades on the market, a drug that was thought to be safe could be pulled off, just like that.

It makes me wonder what we’ll learn about the drugs we’re on now 10, 20 or 30 or more years down the road. I guess it’s a balancing act for patients: On one side of the scale, we’ve got to trust our physicians, pharmacists, the FDA, everyone involved in allowing us some semblance of health; on the other, we’ve got to do the research ourselves and trust our guts if we feel as though something isn’t right for us. I guess it all really just underlines one thing for me: the need for a cure. For all of us, regardless of our autoimmune disease. One day—maybe even within my lifetime—I would love to be able to take some treatment, pill, whatever and be done with it all. Until then, though, I’ll keep slugging alone, taking whatever drug straddles the line between helping and harming.

rikki, don’t lose that number

Wednesday is an important day for arthritis and other patient advocates; it’s “I Need My Rheumatologist” capitol call-in day.

I’m sure by now almost everyone has heard that, unless Congress acts fast to fix the sustainable growth rate (SGR), the formula used to determine payment to doctors, rheumatologists (and all other doctors!) will see a 23-percent cut to Medicare reimbursement payments. (Here’s an interesting commentary on SGR and Medicare.)

This is unacceptable. Everyone has the right to affordable health care. (The Universal Declaration of Human Rights, adopted by the United Nations in 1948, states that “everyone has the right to a standard of living adequate for the health and well-being of oneself and one’s family, including food, clothing, housing, and medical care.”) How many people will no longer be able to see their rheumatologist—or any rheumatologist—if Congress doesn’t act? How many rheumatology practices will have to close or cut back if they can no longer afford to accept Medicare patients?

Seriously, it seems like a no-brainer, Congress.

Organised by the American College of Rheumatology, numerous patient organisations have jumped on board, including the National Psoriasis Foundation, Arthritis Foundation, Lupus Foundation of America and the Spondylitis Association of America.

So, pick up the phone tomorrow and take 30 seconds to call your representatives. To quickly and easily reach lawmakers, dial the AMA Grassroots Hotline at (800) 833-6354. ACR is recommending we start the conversation with, “I need my rheumatologist (or, “My loved one needs his/her rheumatologist”). Please fix the SGR before Nov. 30 to ensure access to my doctor.”


(P.S.-Feel free to use the button I whipped up.)


An interesting article (and now old) from The New York Times describes how the doctor-patient relationship has been changed because of the increasing intrusions into a doctor’s day and increasing demands on her time.

All of us had had the experience of “disappearing” into the meditative world of a procedure and re-emerging not exhausted, but refreshed. The ritual ablutions by the scrub sink washed away the bacteria clinging to our skin and the endless paperwork threatening to choke our enthusiasm. A single rhythmic cardiac monitor replaced the relentless calls of our beepers; and nothing would matter during the long operations except the patient under our knife.

We had entered “the zone.” We were focused on nothing else but our patients and that moment.

But my more recent conversations with surgical colleagues and physicians from other specialties have had a distinctly different timbre. While we continue to deal with many of the same pressures that my mentor dealt with — decreasing autonomy, increasing administrative requirements, less control over our practice environment — the demands on our attention have gone, well, viral.
Extreme multitasking has invaded the patient-doctor relationship.

It is painfully obvious when a doctor has checked out and no longer cares about the individual patient or the patient as an individual. I’ve experienced it myself — to disastrous results.

But the article made me think a little; I know kicking that man, a doctor who didn’t treat me as singular, who was clearly used to either treating patients who didn’t question or were much older than I am and thus needed different kinds of treatments, to the curb was the best thing for me, but doctors certainly need to think about being mindful, taking joy in their profession and seeking to help their patients.

Of course, patients need to take some responsibility, too. Constantly e-mailing or phoning doctors for things that reading the drug pamphlet provided by the pharmacist could answer or unnecessarily taking up doctors’ time (notice I said unnecessarily) adds to the burnout that causes doctors to withdraw. I think sometimes we too often think of doctors as adversaries or as their job, instead of realising they are people too. I think more mindful doctors — and patients — would lead to better relationships and overall better care.

Food for thought, I guess, about doctors, who really are a lifeline for their chronically-ill patients.

strange things are happening

This opinion piece by Frank Rich in The New York Times is spot on. Conservative reaction to the  health care overhaul has been rabid, excessive and, quite frankly, terrifying. Spitting on a black Congressman? Bricks through windows? Death threats? I defy anyone to explain to me how that is a rational response.

Though I support the legislation passed by Congress, it’s more because it’s better than nothing than because I think it’s some miraculous panacea that will suddenly make everything better for everyone — or even just for me. Sure, when the full force of the legislation kicks in, I’ll no longer have to fear losing my job — and more importantly, my insurance — or being denied coverage because I have a pre-existing condition.

But riddle me this: In a few months, when the co-pay support program I’m in stops paying all but $10 of the $200 plus co-pay for some medication I’m on, how will this bill help me then? In all likelihood, I’ll have to go off the only thing that’s really had any effect in managing my PSA, simply because I can’t afford to pay $200 per month for one drug. I just can’t.

So, those of you out there who espouse Sarah Palin’s or Karl Rove’s or John Boehner’s opinion that this legislation is the most horrible thing to ever hit our country, I say, that’s your right to disagree. It really is. But God help you if that’s the only way you can see it. The only way I can see anyone disagreeing with this is if they are lucky enough to be healthy and/or wealthy enough that health doesn’t matter. I’m neither. And I need help.

This health care bill isn’t great, as Dennis Kucinich said; but damn it, it’s better than nothing. So, naysayers, especially those of you in power: Do something productive, join the discussion or go home. Because, really, at some point, your mothers should have taught you the simple kindergarten rule: “If you don’t have something nice to say, don’t say anything at all.”