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Posts from the ‘Healthcare’ Category

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.

Hips Don’t Lie.

“You’re early for your appointment!”  The receptionist looked at me hopefully.  “Less nervous this time?”

(My track record as a nervous dental patient follows me everywhere.)

“Yep.  I’m early.  And I have a babysitter this morning for my kid.  I have to follow through now!”

Over the last seven years or so, I’ve finally hit stride with my dentist visits.  Very sensitive teeth and an obsession with flossing and brushing at home made me feel invincible, skipping cleanings because they were painful and only showing up for emergency dental appointments (like this).  But I’ve been trying to practice what I preach about preventative care, so showing up every six months for cleanings and scheduling repairs immediately is my new jam.

It helps that the dentists I’ve seen over the last few years have been very receptive to requests for more novocaine during repairs or sensitivity-reducing pastes during cleanings. When the procedures aren’t painful, I’ll follow through on all of them.  Which is what brought me to the dentist yesterday:  a very old filling on my back-most molar had come loose, in need of a redo.  As soon as it popped off, I made an appointment, wrangled coverage for my little Guy, and marched into the dentist armed with good blood sugars and my copay up front.

“Can I just duck into your ladies room before going in to see Dr. Fang? [Not his real name, of course.  But holy shit, I wish it was.]”

“Sure thing.  We’ll be calling you in about 15 minutes.”

In the bathroom, I went to de-pants (?), forgetting about the fresh, new pump site on the back of my right hip.  It was exactly where my waistband hit.  Which is why I deftly ripped it off when removing my pants.  Hips don’t lie.  They also don’t like infusion sets.

NEVER FEAR!  BACK UP PEN IS HERE!

Riding a wave of arrogance because I was ready for my dentist appointment and also because I knew I had an insulin pen in my meter case, I checked my CGM graph to see if I needed a little boost before my filling.  (Dentist appointments make me feel nervous, which causes my blood sugar to rise, so I expected to see an upward arrow.)  Sure enough, I was 160 mg/dL with double arrows up.

A unit will fix this right quick.

I pulled the pen cap off and saw a pen needle already screwed in.  Hmmmm.  I knew I’d used this pen when traveling in April.  Had that needle been on there for over a month?  I turned the dial on my Humalog pen to find it spongy and sticky.

Shit.  The last time I had a pen with a sticky dial, it was the result of an old needle cap that had contributed to built up pressure in the pen cartridge.  When it happened previously, I called the pharma company hotline and they advised me to check the rubber stopper on the cartridge.  I did that this time and saw that it was bulging.  I tried to push a unit into the air but nothing came out.  The pen was clogged.  No other pen.  No backup infusion set.

Awesome.  Insulin right there for the taking but no way to access it.  And my blood sugar was climbing aggressively.

“I need to run to my car for a second; is that okay?” I asked the receptionist.

She nodded, eyeing me skeptically.  “You’re coming back in, aren’t you?  Or are you making a run for it?”

“Nope.  I will be back in,” I promised.

The center console of my car is a treasure trove of crap:  lip gloss, spare diapers and wipes, glucose tabs, mints, packets of Truvia, a GPS from 2009 that wouldn’t be able to get me out of my garden never mind to a specific location, and the odd lancet or needle tip.  I was hoping to find one of those needle tips hiding in there, all sharp and new and ready to de-bulge the insulin pen pressure.

And there it was, crammed in the back corner of the console trench, unsure of how old it was but with the paper tab still over the base, so I knew it was unused.

Back in the dentist’s bathroom, I stashed my now-disconnected pump in my purse and was able to steal a unit and a half from my insulin pen (after a test bolus that exploded out of the pen and into the air – I’m sure I heard it yell, “Weeeeeee!!”), heading the high off at the pass.

Thankful for my packrat tendencies, I was called in for my appointment and after 45 minutes of drilling and scraping and refilling and novocaine and polite “Are you okay’s” from the dentist and mangled “mmm hmmm’s” from me, my tooth was filled and my blood sugar wasn’t garbage.

The moral of this toothy tale?  Bring backups of all your diabetes crap when you leave the house.  You never know when you’ll need to forage in the center console for drug paraphernalia.

The Eyeball Situation Becomes Diabetes-Related.

The initial cause:  a rogue fingernail attached to a cute baby

The recurring issue:  repeated corneal tearing

The reason for the repeats:  diabetes

The original eyeball issue came up seven years ago, when Birdy was about nine months old and she unwittingly scraped her thumbnail against my right eye, ripping off a small shred of my epithelium layer.  This was pretty frigging painful and took over a week to fully heal.

Only it didn’t fully heal.  Because once you rip this epithelium layer, it remains compromised and potentially affected by things like bright light, dry air, and overnight eyeball dryness.  I use this Muro 128 gel in my eye every night to help keep my eyelid from adhering to my epithelium.  (This is a weird process, kind of like putting lip gloss from one of those little petri dish pots onto your lips, only in this case I’m taking glossy gel from a small tube and smearing it along my eyeball.)  It’s gloopy and makes my vision blurry, but nine times out of ten, my eyeball stays in one piece.

Except there are those one out of ten times.  A few times since the original injury, my eye has re-ripped.  These moments suck and the pain is stupid but they were happening once every two or three years, so in the grand scheme, it was functional.  Except it happened this year in February, and again on Friday morning, so that’s kind of bullshit and way to frequent.  This is not a functional, work-through-it sort of injury.  This eyeball thing pulls me out of life for a day or two at a time, unable to see or drive or effectively dose insulin or parent anyone.  It’s pretty incapacitating, and also pretty painful.

As noted yesterday, I saw my local ophthalmologist on Friday and he was able to put a bandage contact on my eye to help speed healing and minimize pain.  (This was a brilliant move and I owe him a ton because I ended up with the flu on Friday night and it would have been infinitely worse if I wasn’t able to sleep that illness off due to eyeball pain.  Props to my smart doctor and his magical contact lens.)  Also on Friday, my doctor determined that this issue was in part related to dry eye, which I’ve apparently developed, and it’s a common side dish often served with diabetes.  Looks like this non-diabetes eyeball injury has rolled around in my islets for a spell.

“Your eye becomes dry, especially overnight, and that epithelium tears again,” he said.  “But we have a few options, aside from the Muro gel.  You can also have punctal plugs put in, which block the holes that drain your tears from your eyes, helping keep the eye from getting too dry.”

(I was thankful the word “moist” never made it into that sentence.)

Which is how I ended up with a bandage contact, punctal plugs, preservative free eye drops, and steroid drops for my eye.  And also a renewed respect for the millions of nerves in my eyeball region.  (Note to self: ye olde eyeball was expected to heal fully by the end of the weekend, but the illness and completely dirtbag blood sugars impeded healing by several days.  Take care of your blood sugars when you’re trying to heal.  Turns out that threat was not idle.)

This morning, the eye doctor took a look at my cornea again and determined that the tear was almost fully healed, so he took off the bandage contact (while my son wiggled, sang, and “helped” from my lap).  I hope this is the beginning of the end for all that eyeball stuff, because wearing sunglasses indoors makes me look like this guy and I think it’s starting to freak my kids out.

 

Body Wars.

The Good:  Birdy’s seventh birthday party went off without a hitch.  The cake was made, the guests were fed, the bouncy castle was a source of glee for kids and adults alike, and my daughter spent the day red-faced from jumping, laughing with her friends, and covered in cake frosting.  Cannot ask for more than that.

The Bad:  On Friday morning, my right eye was sore and puffy and those familiar “corneal tear” feelings were close to the surface.  Sometimes this happens and my eye settles down after a few hours (after lots of preservative free tear drops and very little screen time).  And other times, this means the eyeball is cooked and the cornea is going to fully tear.

Which it did.  Friday afternoon, I was lucky enough to get in with my local ophthalmologist, and being the hero human that he is, he was able to confirm the tear, give me some antibiotic drops to help minimize swelling and speed up healing, and then he slapped a bandage contact on my eye so I could function almost normally.  “Your vision out of that eye will be cloudy because of the contact, but hopefully the pain will be greatly reduced.  Come see me next week and we’ll take it out before you travel again.”

Awesome.  This went from bad to better.  Thank goodness for modern medicine.  (More on the eye thing in a bit because that’s an ongoing story.)

Emergency eye appointment (torn cornea, round 8). PWD everywhere … even in the magazines. #waitingwithdiabetes

A post shared by Kerri Sparling (@sixuntilme) on

The Ugly:  Armed with the bandage contact and a babysitter, we took Birdy out on Friday night for a show she wanted to see.  And she loved it.  And we loved it (as much as parents love kids’ shows sort of thing).  And about halfway through the show, I decided I didn’t love it because my stomach was churning and my blood sugars were rising quickly.

Figuring I had a busted infusion set or maybe this was a blood sugar response to eye pain, I sat in the lobby for the rest of the show and tried to get my head straight and stomach settled.

But on the ride home from Providence, my purse went from carrying my wallet and car keys to holding my puke.  Not my best moment.  But it all went in the bag so that’s something.

And for the rest of Friday night, well into Saturday morning, my body spent those hours rejecting all of its contents.  I haven’t thrown up from being sick in at least 15 years (the only times I’ve vomited in the last whatever decades have been after c-sections).  This was a whole new and horrible party, which gave way to severe dehydration (despite sucking down diet flat ginger ale and water), fever, high blood sugars, and small to moderate ketones.

I spent Saturday in bed, sleeping or throwing up, while my kid’s birthday party took place outside.  It took about 48 hours to fully clear this bug, and the aftermath still included ketones and a general dizziness.  And it totally threw me because I’m usually able to work through sickness pretty quickly, if I get sick at all.  I don’t ever spend the day in bed, unable to stand up because I’m too weak or too sick to eat.  This was gross and new territory for me.  And it forced a quick and necessary review of the sick day rules.

This is what 24 hrs of violent vomiting did to my blood sugars. #insulinbecamewater

A post shared by Kerri Sparling (@sixuntilme) on

The Recap:  The circus of vomiting has stopped.  My blood sugars, thanks to a 200% basal rate and some injections and plenty of hydration and vigilant ketone testing, have come down quite a bit and hopefully will be less offensive soon.  My family seems to have escaped the germs so far; hopefully locking myself into the master bedroom and hiding like The Big Man on Campus helped. No cats have puked yet. And once this eyeball heals up, diabetes can go back to being the top health dog.

… oh, and I cleaned out my purse.  I plan to keep using it.  And I’ll never tell you which one it is.

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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