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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Health Care System= Not Good for the Chronically Ill

We, the chronically ill, have many, many health problems.  A cold is not just a cold.  The flu is dangerous.  We must see specialists often.  We need many medications, which are often very expensive.  So, generally we are a pain in the ass for the health care system.

I think, though, we would be less a pain in the ass if we were able to get the care we need in a more efficient, and less complicated, manner.  Case in point: I need to start physical therapy. So, after asking doctor for written referral, I looked online to see which physical therapists accept my insurance.  Friday, I called, made an appointment and was told that their benefits person would check my coverage and call me back to explain what the coverage was.  That was all fine.

Got a call this morning from benefits person.  They no longer accept my insurance.  Ok then.  So, I call the insurance company to get a list of physical therapists in my area.

There were two.

Tried to look both up online to compare; no website for either of them, though one is associated with a very nice skilled nursing center.  I pick one and call the number given to me.  They no longer have a physical therapist at their location.

Which brings me down to one choice, the one housed with the senior home.  I call them.  She very nicely said maybe they could help but they have been having problems lately getting authorization from my insurance company because “we are listed wrong in their system.”

So I am down to maybe hopefully one?

Here’s the thing: I NEED physical therapy.  I would assume everyone involved would like me to be able to function, to work, to do the things I need to do.  Because then I am healthier and less costly to the health care system. Right?

Except I am having to scramble to find someone to help me.  And how often do I hear stories of others with chronic illnesses who must fight for drug coverage or must fight to see a specialist or who must jump through hoops to get the necessary care.  It’s insane.

Because here’s the truth of it: this fight to get health care, to get our bodies even just a little better, this fight makes us sicker. The stress and the worry and the energy we have to spend on the phone with insurance companies and doctors and pharmacies- all of that adds up to a drain our weakened bodies.

So yeah, the problem with the way our health care system is set up right now is that it makes us sicker.  Instead of doing its job, which is to make us well.

Hopefully I will get good news about the PT.  Otherwise, more fighting for me.