The first challenge was that it is an hour and a half away. The place wasn’t the kind to build confidence. The waiting room was a huge room that used to be used for physical therapy, with piles of smashed up file boxes stacked all around the room, and other supplies, and 5 old uncomfortable chairs against one wall.
The actually infusion room was clean and tidy, but there was no wi fi and about 20 chairs in a row with two tv sets. The chair was way to big and I felt like goldilocks in papa bear’s chair but once the foot rest was lifted it was comfortable enough. They weren’t prepared for anyone with a latex allergy and I had to wait while they found gloves and tape they could use on me. My nurse explained the procedure and went over the most likely side effects that I might have immediately, including itching, headaches and fatigue. She also explained that they can not do remicade if I have any signs of illness, have recently taken antibiotics or been around anyone ill, because it will compromise my immune system. They also gave me a TB test that I will need to get checked on Thursday, and took blood for more labs. The IV went into my lower arm right below the inside of my elbow. I couldn’t feel the meds going in except for the coldness of it. About two and a half hours into it I started to itch all over and they wound up giving me two different anti allergy meds into my iv. I felt fine just very achy and tired, but to be honest I have felt very achy and tired for days now. I slept for the last hour of the infusion and woke up groggy and fell back asleep as soon as I got into the car. After I got home I still feel a big groggy, and I bet I could sleep another several hours with no problem. I also feel uncharacteristically cranky, but I am assuming its just a desire to go back to sleep, but being unable to because I am waiting for a fax from the doctor to show up at Kinkos. It was my son’s first day of 8th grade, and I wasn’t able to see him off but I was glad I was at home and awake when he got home to hear about his first day. I go back for my second infusion in two weeks. In the meantime its rest, rest, rest, and saving spoons for the things I really must do, and staying away from hospitals and sick people and doing my best to replicate a germiphobe which isn’t in my nature.