Rheumatoid Arthritis: When your team gets it right

I've written in other posts about the importance of creating a good medical team to deal with the multitude of issues that are part of life with chronic illness. I wrote recently about when someone in your team gets it wrong, and the impact that can have. On that particular occasion, the GP got it totally wrong. I needed those steroid shots into my shoulders, because it's a mechanical issue. Definitely NOT the nerve pain that he insisted it likely was - and for which he prescribed one of the anti-depressants that are currently in use for some types of pain, but I don't HAVE nerve pain. 

Last week, however, and today, part of my team got it very right. Last Tuesday I was due my scheduled infusion of my biologic drug. They happen every four weeks, and for some reason best known to the drug company, it can take up to a week to courier the drug from their base to the pharmacy - which, given I've been told their base is here in the city where I live, seems utterly ridiculous to me. Before we moved, that same drug took two to three days, maximum, to reach the pharmacy - with interstate distances involved. I got the script into the pharmacy a full week ahead of the infusion, but when I got there on the day before to collect it, it wasn't there. A call by the pharmacist to the drug company resulted in the news that it would arrive 'sometime between 9 and 5 on the Tuesday. Utterly useless when I was due at the hospital at 10am on the Tuesday for the infusion. 

The previous week had been one of speedy deterioration as the infusions don't last all the way through the four week period. Sometime during that last week, I start to go downhill, and this time with my dodgy shoulders added in, I wasn't in a good state at all. Getting that news was the last straw and I lost it. In the pharmacy on a busy day when it was full of strangers who were treated to the sight of me falling apart. The staff moved fast and the pharmacist I've dealt with most there had me whisked into a chair behind a screen and supplied with tissues and a drink of cold water before too many people were aware of my personal drama! Once I'd pulled myself together a bit, she got back on the phone and called the hospital to reschedule the infusion for the Wednesday, and then came back to me to get my address and phone number and promise that they would deliver the drug to me at home as soon as it arrived, to save me any further physical effort. 

On the Tuesday I received three phone calls, appraising me of the progress of the couriers, and then the last call to let me know the pharmacist was on her way. When she arrived, she presented me, along with the cold pack of my drugs, with a bag of gift wrapped gifts - little things - hand cream, perfume, a small candle holder. But the thought behind them was enormous - and for the second time in two days, I was in tears... It was the junior pharmacist who did the delivery, and she was most embarrassed by my tears, poor thing, but I was so taken aback by the gesture, and the care demonstrated that went over and above what was required. 

I had the infusion on the Wednesday, and it kicked in a few days later, and I've been feeling quite a bit better. Today, at the suggestion of the pharmacist, I headed in with all my scripts to see what could be filled before the end of the year. For those not in Australia, the Pharmaceutical Benefits Scheme (PBS), a government funded organisation which subsidises certain medications, has a safety net that further subsidises medications on their list once an individual has paid out a specific amount over the course of a year. Given the number of meds I'm on now, I reached that limit in mid-October this year, so my meds have been MUCH cheaper over the last couple of months. Today's exercise was to fill as many scripts as possible before I got back to square one on 1 January. So, for the amount I usually pay (subsidised) for my biologic, I got ALL my scripts filled today, bar the bio, because that's not due to be filled for a couple of weeks. The pharmacist showed me their calendar - it has 'ORDER ORENCIA' printed on it each month in thick black pen a full TWO weeks ahead of each infusion to guarantee that what happened last week doesn't happen again.

I also saw my new rheumatologist for the first time in late November. Unlike the GP, he checked out my shoulders thoroughly, and gave me a steroid shot in the right one, saying to see how I went with that and then if it was effective, he'd do the left one. It was pretty miraculous, I have to say, but I wasn't able to get back in to see him for the second shot. However, when I went in to see the GP for other scripts, and asked if he'd got the letter from the rheumatologist, he was very quick to offer to do the second shot himself - having seen that the rheumatologist had done the first one. Extra bonus was that the only extra I had to pay was for the dressing - which wasn't the case at the rheumatologist, where it cost me $80 extra (NOT covered by Medicare or the PBS)  for the steroid. Have to wonder though, how much less physical grief I'd have had if the GP had just done the shots in the first place when I saw him back at the beginning of November!

These relationships with doctors, pharmacists and other para-medical personnel are vital when you have a chronic illness. I pay a gap when I see the GP because the surgery doesn't bulk bill. These days, it's much harder to find a surgery that does bulk bill, and all too often, those that do are the mega clinics where you can't guarantee seeing the same doctor each time - and that's just not feasible for me, when I need someone who KNOWS my history, and knows ME. It was one of my biggest stresses about our interstate move, knowing I'd have to start over, first finding the right people, and then building the relationships. It takes time. And it's not easy. And it's effort upon effort when you're unwell. But I think I'm getting there. I've certainly cracked it with the pharmacy!