When dealing with a chronic illness, it can sometimes feel like being a patient is a full time job. Last week drove home this feeling. It began Wednesday with a visit to a new internist (general practitioner-GP). I decided to switch GPs for several reasons primarily to get all of my doctors under one clinic roof who all share the same electronic system and who can easily connect with one another if needed. Being that this was a first visit, additional medical history paperwork was required. The evening before, I typed up a brief history, printed it out, and brought it along. My daughter joked that it looked like I was writing a school report! I’ve learned that this is a great way to lay everything out in black and white so the doctor can get the whole picture quickly. This visit ended with the scheduling of a follow-up in two weeks along with lab tests for fasting glucose and lipid panels (related to metabolic syndrome – see earlier posts).
On Friday, most of the day was spent on medical tasks. It began with a weekly methotrexate injection right after breakfast. I learned that the syringes sent by the mail order pharmacy had huge needles which were not fun pushing into my stomach. I made a note to pick up smaller insulin needles later in the day.
I then headed out the door for a visit to my rheumatologist. I was so happy when the nurse and not the medical assistant came to bring me to the examination room. This was because I needed her to help process a co-pay assistance for the last two Actemra infusions I had in March and April. The almost $900 of co-pays were sitting on my bill from the clinic and I wanted to get those cleared. The nurse needed to make copies of the bill and my co-pay debit card in order for money to be loaded on the card so I can pay the bill. Once the funds are loaded, I will need to go to the business office of the clinic to pay the bill.
My rheumy came in and we had a long discussion about how things were going. She decided to up the dose of Remicade to 600mg per infusion and give infusions every four weeks instead of every six weeks. We’re just not seeing the impact expected by these RA treatments. After being on so many treatments, it’s easy to get cynical and I work hard at trying to avoid falling into a negative mindset. We also discussed recurring headaches and she added leucovorin once a week to be taken after the methotrexate injection. Leucovorin in a form of folic acid and is used to combat side effects of methotrexate. She also decided to give a cortisone shot in my right knee which has been getting worse over the past few months. It was a pretty painless procedure and after several days I can notice much less pain and popping. I just wish every other joint could feel that way!
After the rheumy appointment ended, I went straight to the infusion clinic to see how soon I could get in for an infusion at the new dose and treatment schedule. They said they could get me in that afternoon. I scheduled it and then as I walked away, I realized that insurance approval would likely be required first. I went back to the rheumy’s office and talked to the nurse. She confirmed that approval would be required and that she would call me when it came. Back up to the infusion clinic to cancel the appointment! But I wasn’t done with the rheumy yet. She ordered five lab tests – routine liver, kidney, and inflammation tests – so I headed to the lab for a blood draw. The c-reactive protein test came back high once again confirming that systemic inflammation is actively at work and the RA is not under control (but then again, I already knew that based on the way I feel).
After this appointment ended, I had an appointment with my neurologist. Nasty headaches had been raising their ugly head again and he wanted to figure out what was going on. The good thing is that the addition of an injection of solu-medrol cortisone prior to Remicade infusions helped control headaches associated with the infusion. He believes that my body is reacting to all the medicines and he added a preventative medicine in addition to the Imitrix abortive medicine I already use. He said that he would want to get an MRI if I wasn’t better in a couple of weeks.
It was noon by the time I left the clinic and then I went to the pharmacy to pick up some scripts – and the smaller syringes! That took about an hour as there were questions on the script along with new health insurance to process (thanks to changes in U.S. healthcare laws).
Almost the entire day was spent navigating medical systems and providers. I know the clinic like the back of my hand…best place to park, location of restrooms, coffee shop on 1st floor, lab on 2nd floor, rheumatology office 4th floor, infusion clinic 5th floor, neurology 8th floor, internal medicine 9th floor. Whew! I was tired and ready for something non-medical related at the end of this crazy day. Add to such a day the time spent in the infusion clinic, time processing insurance and payment paperwork, communicating with doctors via phone and email, and down time just trying to rest, being an RA patient feels like a job.
The good news is that during one of the of doctor visits, I picked up the July issue of the city magazine because the cover story was about “Top Doctors” in the city. I glanced through the different sections and was so pleased to find my rheumatologist and neurologist both listed as one of the top six in the city in their respective specialties. This helped confirm that I choose the right doctors and was under quality care.