Yesterday was supposed to be my monthly Orencia treatment that controls my joint problems from my RA/Lupus.  The administrative assistant is about to take my payment when she says, “Your referrals have expired”.  Apparently, I had loads of visits remaining, but the referral for them had expired.  The office said it I could get in touch with my Primary Care Provider and they would grant the new referrals, then they would do my infusion.  

Of course, my appointment here was at 1:00 and my PCP’s office happens to be on lunch from 1:00 to 2:00.  Lunch as in no one will answer the phone, whether you call, a pharmacy calls or a doctor calls.  Lunch as in It’s lunchtime, let’s tell Mr. Smith they have cancer after lunch!  A doctor’s office is the only office that I have ever been to where operations completely shut down.  None of the offices I have ever worked in stopped doing business through lunch.  No matter how small they were, someone was answering the phones at least.

So, I now have to wait an hour.  The admin. gets snippy at me and says that referrals are my responsibility.  I said, “I know that they are except you told me when I started here that I shouldn’t worry because you keep track of the referrals and let me know when I am starting to get low on them”.  She then got all fidgety in her chair and stammered “W-well, I-I don’t know who made this appointment but it wasn’t me”!  Sure.  

Look, I know that it is ultimately my responsibility for my referrals.  Lesson learned.  It’s just that, don’t tell me not to worry, that these things are kept track of, and then neglect to give me the referral information that you have so I have my own record.  

It turned out that the IV nurse could wait no longer and had to leave, so I couldn’t get my drug.  I also couldn’t get the results of some very important blood tests, even though the doctor was staring at me and could have at least shouted them out.  I now have to wait two more weeks to get my infusion, putting me at great risk for my joints starting to flare up again, when I have worked so hard to get that under control.  I made an appointment to see the doctor next Wednesday so I could discuss my blood work and hopefully get closer to finding out the reason why I have so much pain in my legs that I have to use a wheelchair or scooter for any outings or why my body feels the need to sleep at least twelve hours a day.  

Sigh.  A long Memorial Day weekend brings fear for me.  Fear that most of the time I have with my son will be spent struggling to keep up with him and being in pain or my body completely giving up and refusing to get out of my bed.  We’ve got no plans, but I will be happy if I can go to the park with him even one day.  I will also be thrilled if he makes poo poo in the potty.