It has been a long while since I wrote about rheumatoid arthritis. You can see my previous posts here, here, and here. I left off writing about my experiences switching to a more aggressive doctor at the University of Pennsylvania Health System. He was a breath of fresh air: confident, aggressive, and linear. There was no trial and error with his plan of treatment, he felt as though the previous doctor had gone through enough back and forth. The new doctor wanted to move straight into the new drugs and not waste any more time with the old-school stuff. Since it has been a long while since this initial encounter with the new doctor at Penn Health, my details are a bit fuzzy; but I do remember that the new doctor started prescribing new medication and in higher doses. It would take several weeks before I could get on the new TNF inhibitor, Humira, because of administrative hurdles and logistical concerns due to refrigeration.

It was a herculean effort to start receiving Humira. There were approvals, doctor interventions (via phone) with the insurance company, and I had to get three months of supply dropped-shipped to my house because the drug was too expensive to possibly become damaged using a local pharmacy as a middleman. The cost of Humira, even with insurance, was pretty high. So high in fact, that it became a line item within our monthly budget. This high cost would play a significant role later in the story, but I will save that for another blog post.

I arranged to work from home when the first shipment of Humira arrived. It needs to be refrigerated and cannot be left on the step. It needs to go straight into the refrigerator after opening. I remember the delivery guy, UPS or FedEx (I don’t really recall which), ringing the bell and giving me a box the size of a small cooler. I opened the box and removed the Styrofoam cooler. Opening the cooler, I found dry ice and several mauve and white boxes with Humira printed on the sides. I put the boxes into the fridge and started reading the instructions. Humira is required to be injected into the tissue within an inch or so around the bellybutton or some place on the leg. The stomach seemed the best place to inject it, but there was no way I was injecting myself. Yes, I am a big chicken baby. Luckily my wife isn’t as squeamish as I am with needles and taught herself how to give me injections.

After a few weeks of Humira treatment (a shot every two weeks near the bellybutton) and piggybacking Humira with Methotrexate, I was starting to see dramatic changes in my body and movement: my hands had actually started to go back to their normal position, movement was not painful and staccato-like, and I felt like a somewhat-normal person. Humira is the best and most expensive drug I have ever taken. It dramatically righted the wrong my immune system did to me. I am not kidding when I write "dramatically," it reversed a lot of the damage and gave me back mobility. Before Humira, I was seriously considering the progression from a cane to a walker in order to get around. I had started using a laptop at work--so I could work from home more often, in the event that I was even less mobile in the near future. I had been planning for the worst and saw little hope. Thankfully, Humira just worked and with relatively quick results.

My next problem was my body, it was a mess from almost a full year of being ravaged by my immune system: stiff, weak, bloated from drugs. I have a blog post about my weight-loss methods and rehabilitation--giving details of equipment, methods, and resources--here and here. Essentially, I rehabbed my body using yoga, weight training, and a progression of walking, hiking, biking, and then running. It was painful and strenuous. Weekly yoga sessions over a year with Victoria Ladd at Wake Up Yoga helped to bring back range of motion and flexibility; weight training down in my basement brought back strength; and the cardio work (walking, hiking, biking, and eventually running) brought back heart-health and helped me to slim down. I am not as strong as I used to be and I am very mindful of my limitations, but I am healthy and happy. Every single day, I am thankful for being able to run, bike, move freely, and interact with people normally. I will never take a simple morning jog or the ability to open a jar of pickles for granted ever again. Rheumatoid Arthritis robs people of everything and leaves folks imprisoned inside of a cage of broken glass-wrapped joints--all of one’s joints becoming unbearably painful, unrecognizable, and useless.

I have more to write, but will save it for another time. I want to go jogging with the wife at a nearby park this morning.