Building a Team

One of the first books I read about chronic illness, You Don’t Look Sick by Joy Selak and Dr. Steven Overman, talked a bit about building a health team of doctors you feel like are really on your team.  These aren’t just doctors you go to because they were the first in the phonebook or because your insurance company made you.  They are doctors you feel have your best interests at heart and who really get what you want in your journey.  At the time that I read that, I had had exactly two doctors, both of whom I liked just fine, and I wasn’t really thinking about needing an entire team to help me.

But since then, I have had been to a few more doctors.  I have had a whole lot of conversations with various people.  I have expanded my care.  And I am realizing that I do, in fact, have a team behind me.  My team includes:

My Primary Care doc, Dr. W, who didn’t blink when I went in and said at the end of an appointment for something else, “oh and I have been really feeling awful for several months.  Very tired, weak; everything is hard to do.”  Instead, she ordered a ton of labs and promptly referred to me to an excellent rheumatologist.

Which brings me to Dr K, my rheumy.  I like her, though she isn’t warm and fuzzy.  There’s something about the way she doesn’t think you’re odd when you explain a symptom, the way she even remembers the phrasing (“my arms feel heavy”) to ask you about it later.  I also very much like that she and her staff never seem to hurry through an appointment, and yet never keep you waiting for long.

Next up, and this one seems silly probably, is the entire staff at the CDI (Center for Diagnostic Imaging) that is located within my rheumy’s building.  I have now been there for two ct’s and several xrays, and every person there is friendly, knowledgeable and helpful.  They explain everything they are doing, and truly have the patient’s best interests at heart. I will have all of my imaging done there, if I can help it.

Even though he’s an odd duck, I also have to add my shrink to the mix.  Dr. A always tells me weird stories about articles he read in journals, or books he’s read.  But he also explains his clinical outlook, and he doesn’t dole out meds like candy, the way so many other psychiatrists do.  I like that about him.

I also feel like my team is made up of some non-doctor types.  My pharmacist, Michelle, who knows me by name, remembers all of my medications and diseases, and always asks me how it’s going.  There’s my acupuncturist, the newest addition to my team, who isn’t intimidated by high levels or multiple problems.  She truly loves what she does and it has made me a believer in acupuncture, as a healing mechanism (even if it doesn’t work for me- jury is still out).   There’s Jean, the nurse at my rheumy’s office.  I have never met Jean because she’s not the nurse who helps with patients in the office, but every email and every phone call is routed through Jean, who always answers promptly and who is always supportive and helpful.   I also feel like I need to add my best friend L to my team, not just because she’s my best friend, but because she is so knowledgeable about all of the stuff I have been going through because of her own health journey; she has also been the one to encourage me to try alternative treatments and who found me my acupuncturist.  L is on my team because she gets how I feel without having any doubts, because she helps me figure out ways to feel better.  I couldn’t ask for a better friend (or team member!).

NOT on my health care team: the urologist who was so disorganized and so incredibly unhelpful at my own appointment with him and who has never called me back with test results over a month later (I got the results on my own, thank you very much).  But that reminds me, I need to find a new urologist!  *Sigh*

So far, I feel pretty good about the team I assembling.  I hadn’t thought at the beginning of this that I would need a whole team, but I really do.  Today, I am hoping to add a physical therapist to the mix, but we’ll see how I like them.  The truth is, these diseases are hard; living with chronic pain is hard.  We can’t do it alone, and we shouldn’t try.  I have been so lucky to have found a good team without too much effort, but I know it won’t always be this easy.  I know it isn’t that easy for most people.  But, I feel so strongly that it is necessary that all I can really say to people who don’t have a good team is keep trying!  It’s worth it.  Because we all need to know that we have a group of people in our corner, people who don’t just have good attitudes but who genuinely want us to be well and don’t feel like there is only one right way to get there. We need doctors, and health providers, who have open-minds and a willingness to try new things.  We need people who will answer our questions honestly, who will give us information and allow us to make our own decisions (when possible, of course).

I have been feeling pretty blue lately, pretty discouraged with how crappy my body feels all the time.  But I do know, at the bottom of all that worry and fear and sadness, that I have a team who will help me feel better eventually.  I just have to stick with them and be patient.  I just have to do my part on the team, hard as it may be.

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  1. fallingoutofthefog

     /  May 8, 2012

    Sounds like you are well on the way to having an excellent team! Good for you! Personally, I only really count my GP on “my” team. My rheumatologist is supposed to be very good, but he was very quick with the meds and short on diagnostic time so I’m not completely sold. That’s about it! I may have to check out that book, too.

    • akajanie

       /  May 8, 2012

      It’s a good book. It made me feel less alone, which is always nice. Her discussion about firing doctors was pretty enlightening to me because somehow it had never occurred to me before that the doctors actually work for us!

  2. Thank you for this post. I haven’t heard of the book, but I’ll check it out. It’s been two months since I got diagnosed and I am just starting to build my “team” outside my rheumatologist. Of course, I consider the nurse in his office to be on my team ever since she very patiently taught me how to inject myself with Enbrel. I’ve just enlisted a therapist and have an appointment with a naturopath. The bigger the team the better I guess. Sounds like yours is great!

    • akajanie

       /  May 9, 2012

      It sounds like we were diagnosed about the same time! I would say from your blog, it sounds like your nurse is definitely on your team! I really appreciated your story about learning to do injections because I had bee wondering how the learning process works with that. My rheumy seems to prefer oral meds, at least as first line,so I am not sure when/if I will have to do injections, but it seems like we all will have to eventually because so many of us will need biologics at some point. How are you feeling on the Enbrel? I have heard so many good things.

      • I think my rheumy put me on it because by the time I was diagnosed I had bone erosions, so he wanted something that would act fast. It definitely hasn’t been the 100% magical cure I was hoping it would be (at least not yet), but a lot of the pain I was feeling in my feet is gone. My doctor says it seems that my inflammation is 60% improved. I think I might keep seeing improvements as I stay on it (I’ve been on it for about two months). My biggest complaint about Enbrel initially was that it would give me pretty bad headaches, but that side effect seems to have gone away. I would say don’t be scared of it – it’s a good option and the fear of injecting yourself is definitely something that can be conquered!

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