I feel like I spend at least 80% of my time these days dealing with doctors. Primary care doctors. Rheumatologists. Therapists. Calling the doctor to ask a question. Calling the doctor to report the latest and greatest failing of my immune system and ask what on earth I should do about it. Waiting for the doctor to call me back. Making doctors appointments. Dealing with insurance and paying doctors. Driving to doctors appointments. Waiting in the waiting room for doctors appointments. I swear I have at least one doctors appointment almost every week. It’s sort of exhausting.
So, when I helped my sister move from Chicago to Los Angeles, of course we had to detour through Boulder so I could get my weekly dosage of doctors appointments. After the wedding, I flew from Tennessee straight to Chicago and spent Sunday night at my sister’s apartment. On Monday morning we finished packing up her apartment and mailing boxes and then we started driving that afternoon. We spent the night in Nebraska and finished the drive to Boulder the next day.
On Wednesday morning I met with a psychiatrist for the first time. I’m not thrilled to admit that, but we’ve already established that this blog is about honesty, so there you go. The therapist I have been seeing recommended I meet with the psychiatrist. He said it was covered by my insurance and so what did I have to loose by trying? So I tried it. After filling out some paperwork and talking to the doctor for a while, he decided that I have “medical and grief-induced depression and anxiety.” The medical part is obviously from my RA and also from some of the drugs I am taking to treat my RA, and the grief part is from the loss of body function that I have experienced. Not exactly uplifting stuff. But, this doctor is an expert and maybe he can help me get myself a little bit happier, so I am keeping an open mind about it.
Later that afternoon I had an appointment with my rheumatologist, where we confirmed that there will be no more Remicade infusions in my future. Instead, we are going to switch to a drug called ENBREL. (Don’t ask me why it’s in all caps – apparently this drug is yelling at you.) ENBREL is in the same family as Remicade, as it is also a tumor necrosis factor (TNF) blocker. TNF is a substance that is made by your body’s immune system, and the theory is that people with immune diseases – like RA – have too much TNF in their bodies. Thus, by blocking some of the TNF you can theoretically reduce inflammation, pain, fatigue, and the other nasty symptoms of RA.
Of course, like Remicade, ENBREL has the same risks of making your body more susceptible to other infections and slightly increasing your risk of lymphoma. Hooray. But, since I got at least some benefit from Remicade, the theory is that another drug in this family might work better for me. Of course, it might work the same. Or it might work worse. Or not at all. We just have to try it and see.
The other delightful part about ENBREL is that it is a “self-injected” medication, which means I’ll have to deal with the needles all by myself. While there is actually a “syringe” option, apparently I will be given an “auto-injector,” which is like an epi-pen where you don’t even really have to see the needle. It’s supposed to be fairly easy to do, but I have to admit that I am a still a little bit nervous about it. Though I suppose if the drug really makes me feel better it will be totally worth it to figure out how to stab myself with a needle once a week. Right now my rheumatologist’s nurse is figuring out the insurance and the paperwork and in a few days I will go back in so she can show me how to give myself the injections.
After visiting my rheumatologist that day I had to go back to student health to get bloodwork done for my rheumatologist, because that’s the only way my insurance covers it. Luckily, I really like the guy who works in the lab at school. He knows me now, seeing as I’ve been in the lab almost every other week for a year now, and he is always super sweet to me. He gave me some advice about giving myself injections, which I really appreciated.
After hitting up three doctors on Wednesday I was miraculously feeling pretty good, so my sister and I decided to get back in the car and keep driving. We spent the night in Utah and made it back to my mom’s house by Thursday afternoon. Since then I’ve had a few days to rest and relax and spend time with my family and friends, which has been really enjoyable.
Unfortunately, I’ve also had a lot more pain than usual over the last couple of days, seeing as I am basically without treatment right now as we wait for the insurance stuff to go through. I don’t know if the extra pain is from sitting in the car or walking around, but my toes have been really bad and consequently it feels like my left calf has a permanent Charlie horse. Also, for the first time, I’ve developed hip pain – it feels like there is a knife stabbing into my left hip joint at all times. So, while I’ve really enjoyed being in California, I think I’ll be ready to get back to Boulder tomorrow so hopefully I can go in to my rheumatologist’s office on Thursday and they can show me how to stab myself in the leg with a needle. And hopefully that will make it all hurt a little less. Hopefully.
So, when I helped my sister move from Chicago to Los Angeles, of course we had to detour through Boulder so I could get my weekly dosage of doctors appointments. After the wedding, I flew from Tennessee straight to Chicago and spent Sunday night at my sister’s apartment. On Monday morning we finished packing up her apartment and mailing boxes and then we started driving that afternoon. We spent the night in Nebraska and finished the drive to Boulder the next day.
On Wednesday morning I met with a psychiatrist for the first time. I’m not thrilled to admit that, but we’ve already established that this blog is about honesty, so there you go. The therapist I have been seeing recommended I meet with the psychiatrist. He said it was covered by my insurance and so what did I have to loose by trying? So I tried it. After filling out some paperwork and talking to the doctor for a while, he decided that I have “medical and grief-induced depression and anxiety.” The medical part is obviously from my RA and also from some of the drugs I am taking to treat my RA, and the grief part is from the loss of body function that I have experienced. Not exactly uplifting stuff. But, this doctor is an expert and maybe he can help me get myself a little bit happier, so I am keeping an open mind about it.
Later that afternoon I had an appointment with my rheumatologist, where we confirmed that there will be no more Remicade infusions in my future. Instead, we are going to switch to a drug called ENBREL. (Don’t ask me why it’s in all caps – apparently this drug is yelling at you.) ENBREL is in the same family as Remicade, as it is also a tumor necrosis factor (TNF) blocker. TNF is a substance that is made by your body’s immune system, and the theory is that people with immune diseases – like RA – have too much TNF in their bodies. Thus, by blocking some of the TNF you can theoretically reduce inflammation, pain, fatigue, and the other nasty symptoms of RA.
Of course, like Remicade, ENBREL has the same risks of making your body more susceptible to other infections and slightly increasing your risk of lymphoma. Hooray. But, since I got at least some benefit from Remicade, the theory is that another drug in this family might work better for me. Of course, it might work the same. Or it might work worse. Or not at all. We just have to try it and see.
The other delightful part about ENBREL is that it is a “self-injected” medication, which means I’ll have to deal with the needles all by myself. While there is actually a “syringe” option, apparently I will be given an “auto-injector,” which is like an epi-pen where you don’t even really have to see the needle. It’s supposed to be fairly easy to do, but I have to admit that I am a still a little bit nervous about it. Though I suppose if the drug really makes me feel better it will be totally worth it to figure out how to stab myself with a needle once a week. Right now my rheumatologist’s nurse is figuring out the insurance and the paperwork and in a few days I will go back in so she can show me how to give myself the injections.
After visiting my rheumatologist that day I had to go back to student health to get bloodwork done for my rheumatologist, because that’s the only way my insurance covers it. Luckily, I really like the guy who works in the lab at school. He knows me now, seeing as I’ve been in the lab almost every other week for a year now, and he is always super sweet to me. He gave me some advice about giving myself injections, which I really appreciated.
After hitting up three doctors on Wednesday I was miraculously feeling pretty good, so my sister and I decided to get back in the car and keep driving. We spent the night in Utah and made it back to my mom’s house by Thursday afternoon. Since then I’ve had a few days to rest and relax and spend time with my family and friends, which has been really enjoyable.
Unfortunately, I’ve also had a lot more pain than usual over the last couple of days, seeing as I am basically without treatment right now as we wait for the insurance stuff to go through. I don’t know if the extra pain is from sitting in the car or walking around, but my toes have been really bad and consequently it feels like my left calf has a permanent Charlie horse. Also, for the first time, I’ve developed hip pain – it feels like there is a knife stabbing into my left hip joint at all times. So, while I’ve really enjoyed being in California, I think I’ll be ready to get back to Boulder tomorrow so hopefully I can go in to my rheumatologist’s office on Thursday and they can show me how to stab myself in the leg with a needle. And hopefully that will make it all hurt a little less. Hopefully.
1 comment:
hugs to you
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