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Posts tagged ‘healthcare’

Building a Healthcare Team

Since deciding that our family of four was the maximum number of people to be in our family (read: no more babies), I’ve been working to transition as much of my healthcare team from Boston to Rhode Island.  After almost 30 years at the Joslin Clinic, this has been a tough transition, because I’m so used to their style and routine.

As in, of course you sit in traffic for two hours before the appointment.  Of course the endocrinologist is forced to schedule three patients, all for 1 pm appointments, making everyone late and frustrated.  Of course lab work results get lost.  Of course it’s all-day project for a disease I don’t like.

… of course I needed to make changes to improve convenience and access and reduce overall rage.  Quit complaining and make changes to improve the mess, right?  Right.

Over the last year, I’ve been testing out different doctors for primary care, OB/GYN, eyeball needs, and endocrinology.

  • Primary care has been a bust as the clinician I initially chose wasn’t a good fit at all.  (She wasn’t comfortable talking about anything related to diabetes, and I need to have a doctor who at least acknowledges that my pancreas is shit.)  But I have another option scheduled for January so hopefully that doctor will be a better partner in my care.  I’ve always wanted my PCP to be the center of my healthcare team, but so far, that’s been a no go.
  • I have always had a local OB/GYN but needed care in Boston for both pregnancies, so my OB/GYN team here in Rhode Island has historically handled everything but my babies.  Now that I’m firmly in the no more kids camp, I’m back to the team I’ve used since college.  All the clinicians in their practice are a good fit, so that’s all set. They’re terrific.
  • My dentist is awesome.  I’ve written about dental crap a bunch of times here, mostly because I have very sensitive teeth and am a HUGE baby when it comes to dental visits, but the right team and their compassionate expertise has made my visits to their office comfortable.  Dare I say FUN?  (No.  Not yet.  Maybe if they design cool grills?)
  • For eyeball needs, I’ve been going to the Beetham Eye Institute at Joslin.  I trust their expertise without question (despite having the diagnosis of a complicated eyeball told to the computer screen instead of to my face, but I’m not as angry about that anymore).  Oddly enough, though, my eye complications improved to “minimal” during my last pregnancy, taking me off the “every three months” list at Beetham and reducing me to yearly.  That, coupled with some recent corneal abrasions, drove me to find local eyeball care.  I am really grateful that I’ve secured a doctor who makes me feel comfortable that he’ll detect any issues and will refer me out to another specialist if he feels my complications are beyond his ability to manage.  THAT is the mark of an incredible clinician – taking good care of patients while simultaneously acknowledging their own human limitations.  This doc is a keeper.
  • And my endo has always been the core of my healthcare team.  At Joslin, I’ve worked my way through their slate of endos since my diagnosis back in 1986 – starting in peds, working my way into the adult clinic, moonlighting over at the pregnancy clinic a few times, and then returning to adult care.  The need to move my care hyper-local brought me to an endo in Rhode Island who, aside from being a shorter drive, totally gets it.  While we’re still in the weird “getting to know you” phase of patient/clinician interactions, I trust this endo because he has many years of expertise in type 1 diabetes and also because he views my opinions and goals as important as his own for me.  This is the kind of teamwork I enjoyed at Joslin, only minus the insane commute.  At my appointment yesterday, I had a good experience with the reception/labwork staff (more on why that matters later), my appointment started on schedule (11.30 am, not noon or noon-thirty), and my endo ran through my list of questions without dismissing them.  After a few more visits with this endo, I’ll consider myself officially weaned from Joslin.

Switching clinicians is stressful, for me, and I don’t enjoy all of these mystery dates.  But I’m getting close to a team that I feel can handle all the moving parts of my health AND they’re all within a 25 minute drive, and that feels pretty freaking good.

What to Work On.

I’ve gotten lazy in my diabetes management.  And I’m not proud of it.  My recent A1C result was still in my goal range but not where it was a few months ago, and I’d love to return to that level of control.  Thing is, I’ve gone soft when it comes to following through on my daily diabetes duties.

Yeah.  I’m at that point in the postpartum recovery thing:  finding ways to up my diabetes game.

I can check two things off my to do list with confidence:  I wear  my Dexcom every, single day and I also have been on top of my doctor’s appointments.  Those two things get big, fat gold stars.

Other stuff needs some grooming, though.  Here’s my wishlist:

  • Check fasting BG immediately after waking up.
  • Calibrate CGM right when it requests calibration.
  • Pre-bolus at least 15 minutes before eating.
  • Exercise 3 – 5 times a week.
  • Sleep more than 5 hours a night.
  • React faster to the high alarm from my Dexcom.
  • Rotate my device sites better.
  • Remember to eat more than coffee before 1 pm.

Hmmm.  That’s a lot.  Plan of attack for each:

  • Check fasting BG immediately after waking up.  We just moved the little Guy out of our bedroom and now he’s sleeping in his crib in his own room, so I have a little more time (3 min versus zero min) in the morning before I have to run and grab him.  I need to return to the habit of keeping my glucose meter on the bathroom counter and using it before I brush my teeth in the morning.
  • Calibrate CGM right when it requests calibration.  Ugh.  This just requires being less of a lazy tool and just checking/calibrating ASAP instead of ignoring the little red blood drop.
  • Pre-bolus at least 15 minutes before eating. This one is admittedly going to be challenging, as my schedule is a little non-scheduley these days.  My son is a busy little creature and also unpredictable, so it’s challenging to find the “right time” to do things like change out my insulin pump, eat breakfast, schedule conference calls.  But as he gets older, he does seem to be settling into something resembling a pattern, so maybe this will get easier.  I’ll try to pre-bolus.
  • Exercise 3 – 5 times a week.  This one is already going in the right direction.  As mentioned, I joined a gym and that gym has childcare, so there’s no excuse.  Except days like over the weekend, when I was away for work, or today, when the little Guy is so sniffling and booger-gross that I don’t want to bring him to the daycare and expose any other kids/adults to his germs.  We did go for a walk around the neighborhood today, clocking in at least a little bit of exercise, so that helps.  The weather warming up will help here, too.  This bullet point is one I’m putting like half a gold star on.
  • Sleep more than 6 hours a night.  OH HA HA HA HA.  The baby thinks 5.30 am is when human beings should wake up.  The early morning hours are gorgeous and I love the quiet of being awake that early, but around 10 pm my body starts to give up on doing body things, although I rarely make it to bed before 11.30 pm.  I need to work on this sleep thing.
  • React faster to the high alarm from my Dexcom.  Again, this one is something I just have to DO.  No excuses and no reason not to.  My high alarm used to be 140 mg/dL (pre-pregnancy and during pregnancy), but I’ve moved it to 180 mg/dL in the last few months.  I should be responding to 180s.  I will work on this.
  • Rotate my device sites better.  Yep, this is also a need.  My thighs have become a permanent home for my Dexcom sensors, but I am okay with the back of my hip or maybe my arm.  I’ll try to get creative.  As far as pump sites, I’ve been working on rotating those better, too.  Maybe it’s time to try a lower arm site?  (Has anyone ever done that and does it hurt??)
  • Remember to eat more than coffee before 1 pm.  Yeah, this is another whoops.  My mornings are generally a bit crazy, and sometimes I’d rather keep my CGM graph steady instead of interrupting it with breakfast.  But this is backfiring because I then get so hungry around lunch time that I eat the fridge, causing a nasty post-lunch bounce.  Moderation here.  Eat regularly throughout the day and I’ll be less likely to unhinge my jaws and devour the contents of the cupboard.

I hope writing this crap down will help up my accountability and will inspire me to keep moving forward.  If I can make one or two of these become habit in the next few weeks, I’ll mark that as a success.  Because backwards is all gross and disgusting feeling and also it looks like there’s a c-section back there and I am NOT going back to that.

I’m Not.

I’ve never had nightmares like this one before
Problem is, when I wake, it’s still there and I’m floored
Because every damn day there’s another news flash
Showing me that some leaders just follow cash.
I used to be iffy, and then was concerned.
But panic is what this new paradigm’s earned.

I’m a person and with me comes chronic disease
Not my fault but it’s mine until I cease to be.
I spend many hours maintaining my health
Despite big bites that it takes out of our wealth.
I have so many bills, premiums, and copays;
I sort them by health issue, person, and phase.
Hours on phone calls that are beyond numbing,
Yet bills for the baby I lost keep on coming.

“It’s not covered.” “Denied.” “You’re a burned down house.”
I wish I was that squeaky-cured research mouse.
“You can enter this risk pool.” But I need flotation
Not rejection from this powerful first world nation.

I’m scared and I’m nervous but I am empowered
Refusing to believe our whole country is soured.
I stand with my peers and I hope for the best
And until this is sorted, I refuse to rest.
I marched in a march and written my reps.
But there’s more I can do. There’s a series of steps.
Time to act, to rise up, to realign thoughts.
I know there’s a system.
It’s broken.

I’m not.

* * *

If you know of places where people can take action and raise their voice, please leave links in the comments. Liking a Facebook status or a Twitter post is good, but making phone calls, writing letters, and standing up for your rights can be so much better.

Participate in Research: Peds to Adult Endo Care.

As an adult with type 1 diabetes who, a hundred years ago, transitioned from pediatric care to adult care, I have a ton of interest in how that process takes place. There are so many factors that play into making that transition effective.  Does the child have a chance to talk one-on-one with their doctor as they get older?  Is there room for group visits in the pediatric space to help transition to adult care?  Is independence and responsibility tossed to the kid all at once or is it a gradual process.  And hey, does the waiting room inspire confidence in peds while the waiting room in the adult clinic generates despair?  (Oooh that last one.)

Growing up with diabetes includes learning how to take the baton of self-care and run with it, and everyone does it differently.

Always working in pursuit of improved patient outcomes, Drs. Tamara and Sean Oser, along with their colleague Dr. Kanthi Krishna, are studying the process of transition from pediatric diabetes care to adult diabetes care. I cannot wait to see what comes of this study and I hope lots of SUM readers click through to see if they qualify to participate.

tl;dr: To see if you qualify and to participate in this study about the journey from peds endo care to adult endo care, you can access their survey here:

HERE IS THE SURVEY!  CLICK ON MEEEEEEE!

Feel free to share this survey with your PWD peers so we can help improve quality of life and health outcomes for our community.  And if you’d like a psychedelic Santa gif, you can have that, too.

Mystery Date.

There was a board game marketed to girls back in the 60’s that resurfaced again in the 90’s, and that’s when I met Mystery Date.  It was a silly game where you tried to assemble an outfit for a date and then you opened the little plastic door to see if your outfit matched that of the Mystery Date guy.  (For example: if you had assembled the “beach” outfit and opened the door to reveal the guy dressed for a “formal dance,” you lost … the game, and also 20 minutes of your life to this stupid, sexist game.)

But Mystery Date popped into my head for a reason.  Since having my son, I’ve been working to wean myself off the Boston-based care team in pursuit of more hyper-local providers (and because I loathe the arrival/departure board at Joslin).  The promise of pregnancy now the past, I don’t feel the same push to make the long ass drive to Boston in order to meet my medical needs.  So in the last few weeks, I’ve been working to assemble a new, short-drive team of healthcare providers.  I currently have new appointments with an OB/Gyn, a primary care doctor, and am gently shopping for a new endocrinologist.  (I plan to keep seeing the team at Boston to track my existing eye complications, as I don’t want that crap going off the rails.)

Finding new providers is kind of like Mystery Date.  I spend a lot of time combing my insurance company’s website to see who is covered by my plan, then calling those HCPs to see if they are taking new patients, and then getting all of my records shipped from previous providers to the new team.  Then I open the little plastic … I mean, the regular-sized medical office door to see if what I’ve assembled matches what’s being provided.

Finding a new healthcare provider is similar to starting a relationship.  There’s this slightly awkward breaking in period where you are both getting to know one another, and then either the confirmation that, yes, personalities and needs are lining up or NO WAY expectations are way maligned.  For me, I crave a personal relationship with my healthcare team, one that the healthcare system barely makes room for.  Being treated as a whole person provides the best health outcomes for me; it’s important for my team to see my health concerns in the context of real life.

Otherwise, it’s like showing up dressed for the BIG SKI TRIP only to see that your healthcare professional is more into a romantic picnic.  Or worse …  the experience goes full DUD.

 

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