Ow, Ow, Ow....Ahhh, Remicade

The last couple of weeks have been shall we say stressful. First there was the week of plumbing issues when all I seemed to do was sop up water in various areas due to pipes breaking and handles getting stuck. I knew when I was sopping up the water with those five baskets of towels that I would pay a big price arthritis-wise. Then we had the thunderstorms that caused the power outage. As the week went on I could tell it was time for my Remicade infusion. This was unusual as most of the time I function at what I consider normal and make it through to the next infusion without really noticing any real pain. Before an infusion it is wise to drink a lot of liquid. No not beer or wine but water and Powerade. This causes the veins to "plump" up and makes it easy to for the IV needle to slide into the vein. So even in all the stuff going on I was very careful to spend the day before my infusion trying to make sure I had enough liquid. I call it my "drinking day". My doctor is involved in arthritis research and had ask me if I would participate in a study he and his associates are doing. The study is to help set markers for arthritis so that in the future people with the same type of symptoms can perhaps use a specific drug rather than have to go though several to find the one that helps them. All they do is take some extra blood at the time of my appointment. I adore my doctor. Because of him I am able to do most things I want to do. He helped me go from almost complete inability to walk or do normal daily tasks to functioning at a good level and not having intense, debilitating pain 24 hours a day. When I got to the office I filled out the paper work to allow them to take the extra blood. Then I saw my doctor. He asked how I was doing, you know the normal doctor stuff. Most everything is about the same except my left knee. This is the knee that caused me so much trouble in 2001. Interestingly I have Rheumatoid Arthritis, which is a systemic autoimmune disease but I also have Osteoarthritis in my knees, especially the left knee. There is a big difference between RA and OA but the explantion of that is for another day. I knew when I sopped the water up during the plumbing leak that I would pay a price and I am. Still it caught me off guard. I had been having a lot of pain in my knee for about four days some worse than others. He looked at my knee, snap, crackle, pop. He then said when the flare was over that he wanted me to do a couple of specific exercises to build up the muscle in my leg to help the knee. He gave me some cream that he said I could use if the pain was bad. Then he said...no more stairs if there are elevators. I said ok but in my mind I was going, What? I mean you take the stairs for healthy reasons, blah, blah, blah. I am to the no more stairs level. Ok, I can do that, it is just,well, a marker. But life goes on and I can still do so much. So now if there is an elevator I take the elevator. So on to the infusion. I call it "getting my juice". Remicade stops the progression of the disease but like all strong, shall we say toxic, drugs it has to be carefully monitored. Before I was diagnosed with RA I had never had an IV. I mean I was a 70's girl, all my kids were "natural births" that being that I had no drugs. So I was a little panicy at the thought of needles and tubes. Today I just stick my arm out and say connect me up. Because I always try to "plump up" my veins I did not expect to have any trouble. Enter the new nurse. I had never seen her before. After two tries we still had no vein. Patience is a virtue. People have to learn and I have to have the medicine. She asks the other nurse who has been there a long time to try. The new nurse get is right off but apparently my blood does not want to flow backwards so they can get a sample. I always have to have that done for them to run a liver panel. Methotrexate and Remicade are hard on the liver. She just says we will get it later. Ah... sweet infusion. Actually getting an infusion is not bad. We have recliners to sit in and a flat screen TV we can watch. I usually read a book. It usually takes and hour and a half to complete the infusion. We then have to try to get blood again. The nurse says do you mind? We will have to stick you again. What am I going to say, I have to do it. So we go to the other hand which gives her no cooperation at all. I mean I am thinking what in the H-E double hockey sticks is going on? This is now 4 sticks, stabs, that have probed not just my delicate skin but my psyche. She says she is done, that I have to get blood taken for the research project and they will just get it and send it back to her. Let me make it clear that getting an infusion is not all that bad and that the nurses are great and very attentive. For some reason my veins were just not cooperating. So I walk across the hall to the lab for another stick. The tech uses a butterfly which is helpful in a situation like I was having. In about one minute she had take 8 tubes of blood. I mean once you are connected it does not make any difference how many they take. The one went back to the doctor and the other 7 were for the research project. RA is a pain. It is frustrating physically and emotionally. By the time I got home I was exausted. I am now ready to go for another two months, well except for dealing with the knee and various other assorted arthritis issues. I am very fortunate to live in an area of the country that has such great arthritis doctors. Mine has given me back my life in a million ways. If a few extra needle pricks and blood tests can help some other person in the future not have to struggle through various drugs before finding one that works, well hey, here is my arm. Even if it might take an extra stab or five.