I started feeling “funny” Thursday night. CL doesn’t have school on Friday and all we had planned all morning was a trip to the bank. I couldn’t get moving in the morning, all my joints were swollen and hot! Like I had icey hot inside of my body! My head was pounding, I was sensitive to light and sound. Which is not a good thing to be anyday, but with a squealing little four year old drama queen it was especially hard to take. I called my doctor at 9am and left a message for her to call me asap. Then I talked to my parents and they wanted me to bring CL over. I was reluctant at first, just because it seems so sad and pathetic to take her over there when all I have to do is go to the bank. But, I swallowed my pride and dropped her off.
All the way to town I talked to my sister Kristen on my cell phone, and cried. I felt shaky and weak, more fatigue than ever before, and now I was getting muscle cramps in my neck and back. It hurt to open my mouth or turn my head. I felt confused, like my eyes were two seconds behind my brain and it was hard to focus on anything. Then it started to sting, first my lips would sting, then my cheeks, then my feet. Then my stomach started to cramp. It was all these weird sensations, and I was pretty much freaking out. I just felt like finding a warm, dark place and curling into a ball for a 20 hour nap. I made it to the bank and then went home. My friend Mike came over and sat with me for a hour or so, and then my doctor finally called back. She said go to my PC doctor and so I did.
CL was still at my parents’ house. I picked CJ up as he was getting off of the bus and took him into town, dropping him off in town. My friend Kasee had a doctor appointment at about the same time at the same clinic, so after her appointment she came and sat with me. They gave me blood tests, a urine test, a chest x-ray and swabbed my nose to check for the flu. I was a little bit anemic, but all the other tests were okay. A few of the blood cultures won’t be done until Tuesday. So, the conclusion was that I have a viral infection. The anemia is probably more of a chronic anemia problem because of the RA, not specific to what is happening right now. The doctor gave me tamiflu and an antibiotic that covers a broad range of viral infections, (hoping to knock down whatever I have), also pain pills and a muscle relaxant. He said that I should start feeling better, and if I don’t, then I will have to come back in.
My next Rituximab treatment is Wednesday. I tried to call the VA back this morning, to let them know what is happening with my infections and to talk to my doctor aboout Wednesday’s treatment. I find out that my doctor is no longer with the VA in Wichita, her last day was Friday. There had been talk of the VA getting an additional RA dr. but no one knew until this morning that they already had and he was replacing my dr. not assisting. So, now I enter panic mode. No one can get a hold of the new dr., most of the people I am connected with have never even heard of him. So, there is the initial panic that no one knows what is going on. Then, I start to think about how this new dr. could be an asshole, like the doctor I had when we lived in OK. He could not even believe in or agree to letting me try Rituximab, let alone be available to talk to me about it before I am supposed to get it.
I talk with the nurses again. I have known them for three years, so I feel a little more comfortable with them. But then one of the nurses named Ann says to me, “But, it will be all right if you skip the treatment on Wednesday, it is not like you have cancer.” And I just completely lose it. Well, yes it is kind of like I have cancer. This treatment has been proven only marginally effective for people with RA if the infusion is given on day one and day fifteen, with the whopping doses of Prednisone in between. It doesn’t say anywhere that I can delay the infusion. I ask that she go back to the computer and read my doctor’s notes, which she does, and then concedes I am right, that I have to have the infusion on day 15 or we will have to wait for ???? to start the whole course of treatment again. I don’t understand why people don’t get that prolonging a treatment doesn’t mean I will be a little achy, it means that I will start a downward spiral in the disease. If it is NOT suppressed it will ramage, and the longer it is allowed to do that the harder it is to reverse. I could be totally incapacitated within days, that is how it was when Remicade stopped working. One day I was fine and the next day I couldn’t lift a sheet or take my own shirt off. The pain is excruitiating. And, damage done could be permanent, or it could start attacking my lungs, my heart, etc…… Will I die tomorrow like I would if I had end stage cancer? NO. But to me, I don’t think it should be considered any less of a priority.
At this point I don’t know if I am more upset because it seems like I know more about these medicines and my course of treatment than the nurses administering it. Or, that my doctor has walked away from me without so much as an attempt to make sure that I am okay and my treatment is continued. Or, that I am starting all over again with a new doctor right at a critical time in my treatment. Or, what if I take the infusion and I end up in the hospital like I almost did this past weekend? What if I am the one of the 1-2% of people that they talk about in the study that “dies from the treatment, but that could have been because of a pre-existing infection”. Or, what if I don’t take the infusion and then I will flare and it will be the most devastating flare of my life, because the disease is so active and there is nothing to give me. I feel so frustrated, and there seems like there is no one qualified to give me any of the answers I need.
I know a lot of people probably wonder why I don’t just walk away from the VA, because it seems like everything gets jumbled and bumbled by them. I guess the answer to that is mostly financial. There is no way we could afford any of the co-pays for even my lesser medicines. I would not be getting RItuximab at all, most doctors won’t agree to let you try a non-FDA approved drug, but even if they do, then your insurance company won’t cover it. So. I stay because it is the only place I can get the care I get and not have to worry about if I can pay for the drug. It seems reational to say that I should be willing to pay whatever the cost for my health. But, I have read and researched and there are very few people that are able to do that. I have read people who are paying anywhere from $600-$1200 a week for Humira, (the last injection I was on), and that is only one of about ten drugs that I would take on a weekly basis. So, I stay with the VA, and until today it was working pretty well for me. A lot of people on the boards I chat on consider me downright lucky to be able to even have the option to try Rituximab if I want to. But lucky is about the last thing I feel today.
I am just sitting here, crying, and waiting for the phone to ring. The nurses are supposed to be tracking the new doctor down, and I even called the private practice phone number I have for my old RA dr. So, there is nothing to do but wait………