Let’s face facts- unless a cure for lupus magically appears one day, you can safely assume that you’re in this for the long haul. It sounds daunting, it sounds terrible in fact, but if you take the time to build the right support systems, it won’t feel like a massive cloud of doom hanging over your head. It can actually be really encouraging to know that you have a crack team of professionals that you can trust, standing ready to help you enjoy your life to it’s fullest.
Of course, putting together said crack team is going to take some time and work. Personally, I hate doctor-hunting; between making sure they take my insurance and making sure the location isn’t too much of a hassle for me to get to, it’s easy to get a headache really fast. Over the years though, there are definitely some points that have been deal makers-or-breakers when it comes to choosing doctors.
This is by no means a complete list. These are just some ideas from my experience to get you thinking about what you really want and need in your health care. Not all points are absolutely necessary either – it’s up to you to decide where you’re willing to make compromises.
- Do they treat Lupus? While lupus falls under the medical umbrella of a rheumatologist, not all rheummies specialize in the disease. They might be more familiar with fibromyalgia, MS or arthritis. You definitely want to make sure that the doctor you’re interested in seeing has experience with the disease that you have.
- Experience. And while we’re on the topic of experience…there’s nothing wrong with asking how many other lupus patients the doctor has. Just ask for an estimate of how many lupus cases have come through the doctor’s office. Another idea to ask if the doctor goes to lupus/ autoimmune disease medical conferences. On the down side, if they do, that means less time to be available to patients. On the plus side, it could also mean that the doctor is right on the front line of new treatments and information.
- Temperament. While it can feel strange to have too personal a relationship with your doctor, you definitely want to see a doctor who treats you with respect and listens to your concerns. If your doctor belittles you, purposely speaks over your head, intimidates or bullies you into treatments that you’re unsure of – it might be time to consider a change.
- Treatment Style. For years, I was totally blessed with an aggressive doctor. Aside from the usual monitoring, he also had me on a regime of bone-builders and vitamins to lessen the harsh effects of my medication. The doctor I have now is fine, but much more passive in his approach, leaving it totally up to me to manage these details for myself. Since I expect to be on my medications for a very long time, for my next doctor I would definitely want another aggressive one to help juggle the details of dealing with medicine side-effects. Think about what you’re willing to put into your health care – more aggressive treatments usually mean changing medicines more often, more medication, more doctor visits and maybe even some experimentation. This might not be the best for your lifestyle or your philosophy and you might want a more cautious or passive doctor. Another important treatment style concern is the doctor’s attitude toward alternative therapies. If you’re interested in trying some, it’s much better to proceed in partnership with your doctor rather than in secret on your own. Herbal remedies can react with pharmaceuticals, so it’s very important to check for any possible problems that mixing herbs and medication can create. If your doctor is open to supporting your care with alternative treatments, this process is made much safer and easier for you.
- Hospital Affiliation. One of the most frustrating experiences I can think of is being stuck in a hospital bed, feeling about 50 different kinds of pain and having to explain my entire medical history to each of the 6 doctors that drift into my room to “check” on me. There are serious benefits to building a history with doctors and hospitals – namely, that the staff isn’t flying blind when it comes to your health. More than once my mentioning my kidney damage has totally changed the course of my treatment and the scary part is that, if I hadn’t said anything, there’s no other way the staff would have known that whatever treatment they were preparing could damage my kidneys further. When you go to a hospital where your doctor is affiliated, you have a better chance of being seen by your doctor instead of round of strangers. Even if your doctor can’t come personally, he may have some influence on who does see you and have a chance to be more involved with your care. Sound confusing? Think of it like having a bank manager as your buddy – if you go to the bank where he works, you get treated a little nicer. Even if the manager is on vacation, he may set you up with a hand-picked assistant to help you out while he’s gone.
Though it can be a massive undertaking, it’s really worth it to keep a set of your medical records to make the transition from your old doctor to your new doctor a little smoother. You don’t need every single detail though a good place to start is a general list of all health problems and an estimate of the date when they started (can’t remember the exact date? Me neither. I usually go with the season or month and year), any surgeries, any major injuries (like maybe a broken bone that still gives you trouble occasionally), what medications you’ve been on (don’t forget to note any allergies!) and what you’re current day-to-day symptoms are. If you have a blood pressure machine at home and a history of high/low blood pressure, noting your machine’s readings every day or every other day can help your doctor get an idea about your health even without a visit.
What other tips do you have for finding Dr. Right?
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