Lupus doesn't leave you a lot of choices. You get it and that's that. It's incurable, all you can do is pray that it has mercy on you. It is a new life, new medical concerns, challenges and bills. It is a new way of maneuvering. It steals joy, self esteem, careers, family security and so on and so much more. It sounds so sad, it sounds so negative but like everything in life, we get to decide. No, not on good health but on our attitude and yes, on how we are going to pursue our health.
We will now partner with our doctors because we will see them frequently. There are the constant appointments to monitor your blood work, to examine your eyes (because one of the medications in particular can indeed blind you) and as much as I'd like to say that there won't be hospital stays, there very well may be hospital stays so you are indeed going to get to know your doctors very well. Unfortunately, many of them see you as a price tag, a burden, a crier, a complainer and a general pain in the butt. They have forgotten why they are there. I know some, many of them thought, ooohhh, I'll be a doctor, be thought of as prestigious and make a lot of money. It's our job to remind them that with that job comes a real human, a hurting person (because who goes to see them when they aren't hurting) someone who is worthy of being heard, being seen, being treated with care and concern. I am a huge proponent for advocating for your health. There was once upon a time when we would blindly trust our doctors but that time has past. No more can we blame our healthcare providers for not knowing something when the internet is filled with all kinds of information for US to partake in. Advocating for your health does not mean you get to take a passive role. You must....MUST get out there and do the research. I have seen these doctors who feel like you know nothing, they went to school for what? 8, 12 years, they went to some seminars, symposiums? Umm hmm, that's cute, I have been wearing this body at the time of this writing almost 47 years, my education on it trumps yours. Boom! Now that we have the hierarchy established, if the doctor is so knowledgeable, then he/she should be able to take the time to patiently answer your concerns regardless of where on WebMD you may have found it. If it concerns you, it needs to be addressed. While I am no fan of Donald Trump, I am a fan of telling someone “you're fired” when it comes to your health. THIS IS YOUR LIFE! For real. I'm not joking and you shouldn't be either. You truly only get one and you need to make sure that the best care is being taken of it. I can't stress this enough.
Your doctors have zero qualms about making you feel foolish, they have no issues whatsoever making you feel you are backing their schedules up so why should you have any about getting the care you are paying for? Yes, you are paying for it. Your insurance dollars, your tax dollars, your hard earned dollars and if not yours, then mine and I demand they do what is right with those dollars. You don't go into Walmart for apples and let the cashier tell you that you're getting oranges and she's been working there for 3 years and knows better do you? Ok then, that settles it. Tell that doctor to stop acting like you are a number and to see you for what you are. A person who requires their level of expertise but also their human heart to show a little compassion even though they can't bill for it. This is a life altering decision for you that may only be all in a day's work for them. You are fighting for your life, don't you let them forget that. If they can't seem to get it right, research, research & then research some more until you find a good doctor (finding a good doctor is sadly like dating these days, you gotta kiss a few frogs) but you kiss those frogs & kick that shit doctor to the curb. YOU'RE FIRED!