Tuesday’s appointment #lupus

I went to see my rheumatologist on Tuesday. It was a strange appointment. I feel like sometimes I leave there more confused than when I walked in, which has made the experience in general frustrating and unreliable. I was in a brain fog, as usual. My mom is always there to help me organize my thoughts and remember things I wanted to tell the doctor. I opened up by telling her I was having really bad heartburn issues that wake me up really early in the morning and have changed my diet. I told her about my high blood pressure problems I’ve been having lately and the bad heart palpitations I get after I eat and when I get up in the morning, and when I first lie down at night. It’s been a real issue for me for a few years, and lately it’s been a lot worse. But for some reason this time she decided to actually take them seriously. She seemed pretty worried about it. She talked about how it could be a nerve conduction issue, suggesting inflammation in the pathway between my brain and my heart/stomach. She went off into a tangent about Cytoxan, and about how she hates using that drug, but that Rituxan wouldn’t help that kind of problem. She also talked about how I would have to take a pre-drug to help prevent me from becoming infertile from the Cytoxan, and that it’s really expensive. We got back to the subject of heartburn when she started talking about having an upper endoscopy done. I told her the heartburn isn’t something that is constant, that it flares, and when it flares it goes on for weeks. She seemed irritated when I said that, and said she “misinterpreted” what I said because it was the first thing I told her about. I didn’t realize there was a certain order I was supposed to tell her things, especially with my concentration difficulties, I just went with the first thing I remembered. And the fact that it isn’t a constant issue doesn’t make it any less important or less alarming, so I don’t know why she acted like I mislead her. She had a lot of sciencey things to say to me as usual, about compliment levels and all that. She keeps telling me that they’re normal except for one being slightly off. She also told me that they don’t always correlate with lupus activity or how a person feels. It made me wonder what the point was of her telling me these results every time. She never bothered to explain to me what the hell it means anyway. She said I also tested “false postive” for kidney involvement, and that a lot of her patients are testing false positives. It made me wonder how she would know one way or the other. The lab she uses, from my understanding, isn’t nearly as accurate as Cedars-Sinai, and it makes me uncomfortable that my tests are sent there sometimes.
The fact that she threw another drug into our conversation, and a really frightening one at that, makes me uneasy. With the Rituxan, it makes me wonder if I have the right drug in my body again. If she had listened to me about my heart palpitation problem sooner, perhaps I’d be on a different treatment now.
I’m tired of how wishy-washy she is, her lack of confidence in herself, her inability to make a decision sometimes, and her unavailability. I’m ready to switch rheumatologists.
I have a cardiologist appointment on Monday. She got me an appointment right away. She is really concerned. But I just don’t understand what took her so long to be concerned about my heart when I’ve been bitching at her about it for a while.
As far as the effects of the Rituxan, I don’t feel anything yet. I feel pretty crappy, actually. I’ve had to take extra hydrocortisone to treat my Addison’s, because I can feel my cortisol drop in the afternoon. It makes me want to vomit. I can hardly get through the day unless I take extra. My rheumatologist suggested the stress-dosing as the cause of my heart palpitations, but I really don’t stress dose unless I absolutely have to, and it’s a replacement dose, so I shouldn’t really have side effects from it. Besides, I’ve been having the heart palpitations since August 2012, and this recent stress-dosing problem is only as old as my Rituxan treatments. I’ve been taking Hydrocortisone since 2005 and haven’t ever had a problem with it. I really don’t think that’s it. Plus, if I’m ready to vomit, I have to stress dose, unless I want to end up in the ER for Adrenal Crisis. My heart palpitations happen at very specific times, and it never correlates with when and and how much Hydrocortisone. It just doesn’t make any sense to me.
I’m pretty annoyed, and ready to see a doctor that has some balls. I know I am a complicated case and I need someone who is fascinated rather than intimidated by it.


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