yo dawg, yo
This is going to be a long, probably boring, probably eyeroll-inducing entry about my health (or lack thereof), so if you're easily annoyed or whatever today, you might want to skip.
On Friday, I had my first appointment with my rheumatologist, Dr Bunch. She seemed pretty optimistic, didn't even seem sure I really had RA because my description of symptoms and her exam of my joints didn't indicate swelling/inflammation, etc. I have some symptoms, and my ANA was positive, so she ordered like 20 blood tests, I'm not even joking. They took 10 phials of blood! Most of them to test for lupus, but lots of other things, too. Complete blood count, liver function, etc etc. She prescribed me meloxicam, which is a NSAID, and I was supposed to see her again in two weeks to assess the effectiveness and possibly switch to plaquenil, which is an antimalarial drug with disease modifying effects, which basically means it helps reduce inflammation and slows the progress of RA.
So they took all this blood, and I was sick (am still a bit sick) with a cold, so after that I was not feeling great. I went home and slept from 5PM until 8:30AM. Crazytimes. I started taking the meloxicam on Sunday, and I think it did help a little. I wasn't feeling as stiff in my fingers, or I didn't notice it as much.
Anyway, yesterday Dr Bunch's nurse called me. He told me some of my blood tests had come back and I guess whatever Bunch saw in them concerned her, because the nurse told me to stop taking the meloxicam and they'd ordered prednisone for me, which would be ready at my pharmacy. They also wanted to move my appointment up to Thursday, instead of having it next Friday (April 16). Naturally, this freaked me out, but I get so flustered on the phone, it's really hard for me to concentrate/remember/comprehend if I can't see the person I'm talking to or see the words we've already said. I suck on the phone, omg. So I didn't ask any questions, and of course I was at work, so it wasn't like I wanted to broadcast the whole thing to the office.
I got off the phone and looked up prednisone. And continued to freak out, because it's a nasty drug and I really don't want to take it at all if I can avoid it. I called my mom after work and she told me not to worry, it was probably just going to be a burst packet that I'd only take for a few days. She said the blood tests probably confirmed that I was in the midst of a flare, and the doctor just wants to get it under control so they can start me on one of the disease modifying drugs like methotrexate. She said I'd know when I picked up my prescription--usually it's just a few days' worth, and it tapers in dosage. Short-term, nothing to worry about.
So I was feeling better, until I got my prescription. The pharmacists started asking me how long the doctor told me to take it, looked at the directions and frowned. A lot. He was like, "She's got you on 10mg a day with 30 days' supply and two refills. If she's planning to have you on this long term..." And then he looked at me and basically said, "DO NOT TAKE THIS DRUG." I mean, what he actually said was that I should talk to my doctor more before starting the drug, that it wouldn't treat the underlying RA and if I'm on it for long-term, there are a lot of serious side effects I need to weigh against the positives, like osteoperosis and hypertension and adrenal shriveling and drug-inducing Cushing's disease.
I went home crying, and I made Catsilo come over to comfort me. He has a friend, I will call her Jen Lindly because she looks EXACTLY like Michelle Williams during Dawson's Creek, who was diagnosed with RA at 15 and has been through all of this before. He talked to her, and Jen Lindly basically said that they usually only prescribe prednisone as mono-therapy in patients with severe pitting, which is basically bone degradation.
In the end, I decided to wait until I see the doctor on Thursday before I'm willing to start that kind of drug. Besides which, in the pamphlet the pharmacy gave me, it says not to take prednisone if you have hypothyroidism, which hello, hi, I do. I'm also still sick, so I can't start the prednisone until I'm fully healthy again anyway, because it's an immuno-suppressant and would probably really fuck up my ability to fight off the infection I have.
And here's the part where I admit that mainly, I don't want to take another drug that will make me gain a lot of weight in a short amount of time with no ability to control it. I already did that with Paxil, and it took me five years and an Adderall prescription to lose 15 of the 20 pounds I gained on Paxil. Uncontrollable weight gain makes me crazy. And if the prednisone is only going to make me feel better, but not actually BE better, then I'd rather be in pain than be crazy. I'm not even in that much pain, to be honest. Parts of me hurt, sure, but they've been hurting for the past 6 months, or in the case of my knees, the past 20 years, so it's nothing new, nothing I can't handle. I don't want drugs that will treat my symptoms when there are drugs that will significantly slow the disease itself.
When I met with Bunch last week, she said she didn't want to start me on methotrexate or the other disease modifyers because I'm so young and could still have kids, blah blah. I didn't argue at the time; I figured I'd try out the meloxicam and when I saw her in two weeks if it wasn't working, we could try something new. But I think when I see her on Thursday, I'm going to have to be very adamant about not taking prednisone, especially not long term, especially not just to treat my symptoms, which don't bother me THAT much. I'm not going to have kids. I don't like kids. I don't want to shove one out of my vagina EVER. I mean, if I accidentally got pregnant, I wouldn't have an abortion, but I pretty much do everything in my power to prevent such a situation from occurring. Doctors don't tend to enjoy hearing that, especially female doctors, and they usually don't believe me, or they think I'll change my mind. I'm not going to change my mind. And with all the shit wrong with my body and my brain, why would I ever want to pass on my genes to someone else?
Catsilo's going with me on Thursday for moral support, and probably to advocate for me because I suck with doctors. I feel bad about myself for asking him to come, because this is something I feel like I should be able to do on my own, but this is too important to let my pride get in the way. If my mom were here, I would let her come. I probably couldn't stop her! My mom's been dealing with RA since she was just a bit older than me, so she knows her shit.
I see my GP next week, so I guess if Bunch gives me a hard time about refusing the prednisone, I'll ask my GP for another referral. I like my GP a lot (this is the new one, not the one who tried to tell me I was bipolar) and I think he'll understand about needing to find the right rheumatologist. I liked Bunch when I saw her on Friday, too, but I don't like this sudden meds switch with no real explanation. That might've been the nurse's fault, though, for not taking the time to explain everything to me, rather than Bunch's, so I want to give her the benefit of the doubt or whatever.
Anyway, that's what's going on. Had a huge freak out. I think I finally realized that I have a serious disease and I'm finally, actually, scared. And it's hard, too, because my relationship with Catsilo is still fairly new, and I don't want to add stress and this sort of responsibility to his life. I don't want to be a burden, you know? It's hard for me to need other people. I think I have this idea that the second I start depending on someone is the second they start planning their escape. And it's all mixed up in obligation... because I don't want someone staying with me because they feel obligated to, because I'm sick or whatever, either. He's not like that (he's really really not), but I still worry about it.
Anyway, I'm going to stop typing now and do some work. And then I just have to wait until Thursday and see what happens at the rheumatologist's office. But tonight I'm going roller skating! And that will be awesome.
On Friday, I had my first appointment with my rheumatologist, Dr Bunch. She seemed pretty optimistic, didn't even seem sure I really had RA because my description of symptoms and her exam of my joints didn't indicate swelling/inflammation, etc. I have some symptoms, and my ANA was positive, so she ordered like 20 blood tests, I'm not even joking. They took 10 phials of blood! Most of them to test for lupus, but lots of other things, too. Complete blood count, liver function, etc etc. She prescribed me meloxicam, which is a NSAID, and I was supposed to see her again in two weeks to assess the effectiveness and possibly switch to plaquenil, which is an antimalarial drug with disease modifying effects, which basically means it helps reduce inflammation and slows the progress of RA.
So they took all this blood, and I was sick (am still a bit sick) with a cold, so after that I was not feeling great. I went home and slept from 5PM until 8:30AM. Crazytimes. I started taking the meloxicam on Sunday, and I think it did help a little. I wasn't feeling as stiff in my fingers, or I didn't notice it as much.
Anyway, yesterday Dr Bunch's nurse called me. He told me some of my blood tests had come back and I guess whatever Bunch saw in them concerned her, because the nurse told me to stop taking the meloxicam and they'd ordered prednisone for me, which would be ready at my pharmacy. They also wanted to move my appointment up to Thursday, instead of having it next Friday (April 16). Naturally, this freaked me out, but I get so flustered on the phone, it's really hard for me to concentrate/remember/comprehend if I can't see the person I'm talking to or see the words we've already said. I suck on the phone, omg. So I didn't ask any questions, and of course I was at work, so it wasn't like I wanted to broadcast the whole thing to the office.
I got off the phone and looked up prednisone. And continued to freak out, because it's a nasty drug and I really don't want to take it at all if I can avoid it. I called my mom after work and she told me not to worry, it was probably just going to be a burst packet that I'd only take for a few days. She said the blood tests probably confirmed that I was in the midst of a flare, and the doctor just wants to get it under control so they can start me on one of the disease modifying drugs like methotrexate. She said I'd know when I picked up my prescription--usually it's just a few days' worth, and it tapers in dosage. Short-term, nothing to worry about.
So I was feeling better, until I got my prescription. The pharmacists started asking me how long the doctor told me to take it, looked at the directions and frowned. A lot. He was like, "She's got you on 10mg a day with 30 days' supply and two refills. If she's planning to have you on this long term..." And then he looked at me and basically said, "DO NOT TAKE THIS DRUG." I mean, what he actually said was that I should talk to my doctor more before starting the drug, that it wouldn't treat the underlying RA and if I'm on it for long-term, there are a lot of serious side effects I need to weigh against the positives, like osteoperosis and hypertension and adrenal shriveling and drug-inducing Cushing's disease.
I went home crying, and I made Catsilo come over to comfort me. He has a friend, I will call her Jen Lindly because she looks EXACTLY like Michelle Williams during Dawson's Creek, who was diagnosed with RA at 15 and has been through all of this before. He talked to her, and Jen Lindly basically said that they usually only prescribe prednisone as mono-therapy in patients with severe pitting, which is basically bone degradation.
In the end, I decided to wait until I see the doctor on Thursday before I'm willing to start that kind of drug. Besides which, in the pamphlet the pharmacy gave me, it says not to take prednisone if you have hypothyroidism, which hello, hi, I do. I'm also still sick, so I can't start the prednisone until I'm fully healthy again anyway, because it's an immuno-suppressant and would probably really fuck up my ability to fight off the infection I have.
And here's the part where I admit that mainly, I don't want to take another drug that will make me gain a lot of weight in a short amount of time with no ability to control it. I already did that with Paxil, and it took me five years and an Adderall prescription to lose 15 of the 20 pounds I gained on Paxil. Uncontrollable weight gain makes me crazy. And if the prednisone is only going to make me feel better, but not actually BE better, then I'd rather be in pain than be crazy. I'm not even in that much pain, to be honest. Parts of me hurt, sure, but they've been hurting for the past 6 months, or in the case of my knees, the past 20 years, so it's nothing new, nothing I can't handle. I don't want drugs that will treat my symptoms when there are drugs that will significantly slow the disease itself.
When I met with Bunch last week, she said she didn't want to start me on methotrexate or the other disease modifyers because I'm so young and could still have kids, blah blah. I didn't argue at the time; I figured I'd try out the meloxicam and when I saw her in two weeks if it wasn't working, we could try something new. But I think when I see her on Thursday, I'm going to have to be very adamant about not taking prednisone, especially not long term, especially not just to treat my symptoms, which don't bother me THAT much. I'm not going to have kids. I don't like kids. I don't want to shove one out of my vagina EVER. I mean, if I accidentally got pregnant, I wouldn't have an abortion, but I pretty much do everything in my power to prevent such a situation from occurring. Doctors don't tend to enjoy hearing that, especially female doctors, and they usually don't believe me, or they think I'll change my mind. I'm not going to change my mind. And with all the shit wrong with my body and my brain, why would I ever want to pass on my genes to someone else?
Catsilo's going with me on Thursday for moral support, and probably to advocate for me because I suck with doctors. I feel bad about myself for asking him to come, because this is something I feel like I should be able to do on my own, but this is too important to let my pride get in the way. If my mom were here, I would let her come. I probably couldn't stop her! My mom's been dealing with RA since she was just a bit older than me, so she knows her shit.
I see my GP next week, so I guess if Bunch gives me a hard time about refusing the prednisone, I'll ask my GP for another referral. I like my GP a lot (this is the new one, not the one who tried to tell me I was bipolar) and I think he'll understand about needing to find the right rheumatologist. I liked Bunch when I saw her on Friday, too, but I don't like this sudden meds switch with no real explanation. That might've been the nurse's fault, though, for not taking the time to explain everything to me, rather than Bunch's, so I want to give her the benefit of the doubt or whatever.
Anyway, that's what's going on. Had a huge freak out. I think I finally realized that I have a serious disease and I'm finally, actually, scared. And it's hard, too, because my relationship with Catsilo is still fairly new, and I don't want to add stress and this sort of responsibility to his life. I don't want to be a burden, you know? It's hard for me to need other people. I think I have this idea that the second I start depending on someone is the second they start planning their escape. And it's all mixed up in obligation... because I don't want someone staying with me because they feel obligated to, because I'm sick or whatever, either. He's not like that (he's really really not), but I still worry about it.
Anyway, I'm going to stop typing now and do some work. And then I just have to wait until Thursday and see what happens at the rheumatologist's office. But tonight I'm going roller skating! And that will be awesome.