Sunday, January 25, 2015

New rheumatologist: What would you bring up?

It's not that I hate my old doc, but it's very obvious that the office is too busy to really dedicate time to so many patients. It also shows in their lack of attention to detail (refill issues, lab results taking a week to get back to me instead of the three days, etc). They're very sweet people and I love that the rheumy teaches, but the teaching is getting in the way of my care at this point. I gotta do what's best for me and peace out.

I see my new rheumy Thursday morning which means it's time for me to start obsessing as I usually do before appointments, about what I'm going to say in the short time I see the doc. This time, I'm scheduled for a whole hour, which will be longer than I've sat with one of my docs in a long time.

I obviously am going to have to bring up the fact that I don't have any records from my childhood, since I didn't get to see doctors. I want to bring up frustrations with my current rheumy team and the fact that they're not treating me for SJIA/Still's. I want to start talking about other meds. Cimzia isn't awful, but I've also not done my shot for like a month and not felt any real difference other than not feeling quite as flu-like (I'll do it tonight).

I'm sure that part of the issue with that too though is the torn labrum. I would think it is distracting my body more, even with the pain lesser than it was a month ago when this all started. It still is limiting my activity and causing pain. My quality of life is still lesser than it should be. Perhaps I can discuss surgery and thoughts about that with the new doc. Even though it's feeling better, the fact that it's still causing problems AND has always been an awful joint for me makes me feel like surgery would be best.

I also am going to start working on getting my records so that I can go through and correct them... and so I can have my x-rays and scans for fun decorations.

I have problems.

But seriously though, how cool is it to have pictures essentially of your insides, of what makes you move and function?

Anyway.

What are some things that you've brought up to new specialists? What is the most important to bring up in your short time? Is listing your expectations a good idea, or too bossy?

2 comments:

  1. These are exactly my issues right now, as I moved so far away from my old specialist. I was never being treated for Still's (even though that was my first diagnosis... I won't ever understand why this is so common for people with stills) and I was usually attacked for having my mobility aids (cane/walker/forearm crutches) so I suppose it was time to move on anyways.

    I am planning on bringing up how long I have been experiencing joint pain for. I have a journal that I have been keeping since before my diagnosis mapping out my fevers and joint pain for the day. Hopefully my old office sends my records no problem, so they'll have those to.

    I also do not think it is bossy to list your expectations! I have done that with GP's and other specialist. I have found they tend to work harder when I mention what I expect from my care, and that, if they don't get to that level, I will have to find another specialist to take my case. I used to never do this because I would always put doctors on this higher plane of being. I learned a lot when I realized doctors are just humans who need motivation and expectations like everyone else, and most of the time, they will work harder for it! I hope you have a really good first visit and you start getting treated for stills properly and not just jra. Take good care!!

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    1. Aw thanks Spencer! I like your additions - the joint pain, fevers, etc. Perhaps I should monitor my fevers a little more this week to give her a better idea.

      Let me know if you need help finding a rheumy, okay? I know things are a little all over the place right now, but if there's anything I can do to help, just give me a holler.

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