I don’t know whether I’m mad, having a pity party, depressed, or all three. Probably all three.
It’s been a rough few weeks. I’ve been in a lot of pain since the Xeljanz stopped working for me and a couple of weeks ago (as noted in an earlier post) my rheumatologist and I made the decision to switch to Remicade, which is an infused biologic. After being on Xeljanz which was simply one small white tablet twice a day, considering an IV medication was not very appealing. But, I’m running out of options and when my hands are so sore it hurts when my husband holds them, I have to do something. There are some days when it even hurts to type.
I was told two weeks ago at my rheumatologist’s appointment that the paperwork would go into the infusion provider that day and they would handle getting the insurance approvals and scheduling. When I hadn’t heard anything for a week, I called my rheumatologist’s office back to check in. It seems the nurse (who is new to the practice) hadn’t put the orders into the computer to be sent to the infusion company. I was promised they’d go out that day.
Another week goes by. Still in pain. Still have swollen joints. Still haven’t heard from the infusion company. So I called my rheumatologist’s office again. They gave me the number of the infusion company, which I called and got voice mail. I waited 24 hours then called again. I finally got a call back from my “account manager” later that afternoon. She told me she hadn’t heard of me until I had called and left a message. She had called my rheumatologist office and found that my paperwork was still sitting on the nurse’s desk and hadn’t been transmitted to her. However, she now had my paperwork and was starting to work on it immediately.
Fortunately she called me back later that afternoon and told me all the insurance hurdles had been cleared and that I could schedule my first infusion at the next “infusion day” at the doctor’s office — which is yet another week away. So three weeks after the original prescription, I’m finally getting scheduled for something that should have taken a couple of hours to resolve.
I believe in being a proactive participant in my healthcare process, but I somehow think the line should be drawn on doing the nurse’s job for her. Next thing you know, I’ll be taking my own blood pressure (which is pretty high right now).
All this aggravation aside, I’m still not reconciled to this whole infusion thing. It’s been six years since my diagnosis and (three joint replacements, multiple knee arthroscopies, two rotator cuff surgeries and a spinal fusion surgery aside), I’ve pretty much ignored the fact that I have RA and gone about living my life. The minor aggravation of taking a pill every day or an injection a few times a month (at my convenience) didn’t really intrude on my daily activities.
But now I’m faced with a whole new perception of reality. This will probably change once I go through the first infusion, but right now I think about infusion patients and I think about patients who are really ill. They take really strong medicines that must be administered intravenously and be carefully monitored during the process. It takes hours and it must be done on a schedule convenient for the infusion provider. I no longer feel in control of the process.
And I will tell you that the thought of having an infusion every six weeks for the rest of my life is almost overwhelming. My friends have told me that they’re amazed that I’ve taken RA in stride. But this hurdle is going to take some time to get over.
Part of me just wants to give up other parts of my life and just focus on everything it takes to have RA — do the infusions, take the pain pills (which I don’t), acknowledge that daily exercise is a requirement not an elective — basically be a professional patient full time and make time for the rest of my life as I can.
The other part of me says this is stupid. I’m doing the Remicade to improve the quality of my life and that the method of delivery (infusion), while inconvenient, is nothing more than that — inconvenient. It’s not a prison sentence.
There’s really no point to this blog except, true to the title, more whining. Next week after the first infusion and (possibly) when I start feeling better, life will no doubt look brighter and I’ll be doing my happy dance once again.
I hope you have more brightness and less whining in your day. Thanks for checking in.