So, just because it’s something that you know or something what the book says, doesn’t mean that it’s me. It would be better if [my rheumatologist] listen and take everything on a case by case. Instead of just putting me in the lupus pile.… But [my rheumatologist] talks at me and not to me … It’s a counter-reaction to whatever I said.… Respondent B This [infusion] feels cold. With the lupus, because I have the [RP]. I have my little jacket to protect from the UV rays. This changes my body temperature. When it [infusion] goes in, it feels like winter. Yeah, that’s my life. I don’t know if it’s working. Do I have to do this for the rest of my life? Do I get any time off? They [rheumatologists] study it [lupus] but they don’t know. Respondent B They try and tell me how I feel. Or, ‘Oh no, the drugs don’t do that’. It does it to me. You [rheumatologist] don’t take the drug; I take the drug. Sometimes, I shut down. And after I tell you how I feel, and you tell me that’s wrong, I get frustrated. You not listening. Just because you did this [treatment] for somebody else does not mean it will work same way in me.… It [drug] may do this for them [other patient] but it doesn’t do this for me. Respondent B So, my theory behind my medication is, if I’m feeling good today, then I’m not taking my medication today. Respondent D I take it [medication] now so I don’t have to fight [my rheumatologist].… I pick and choose. I pick and choose. There will be days where I’ll be like, whatever, I’m not taking it.… Respondent A I don’t care if people diagnose [me] with jack shit anymore. I just go to the doctor and make sure my junk isn't blowing up anywhere … to make sure I don't die before I raise my children. I don't even care what it's [lupus] called, quite frankly.… I have no expectation that anyone can tell me what is causing what. I think that for the most part, the medical community, they kind of know some stuff and the rest is a crapshoot of guessing. Respondent E
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