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Posts from the ‘Real Life Diabetes’ Category

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.

 

Day in the Life of a New (Old) Mom … with Diabetes.

Six years ago, I was adjusting to motherhood for the first time during Diabetes Blog Week, and one of the post prompts was to write about a day in the life with diabetes.  My day in the life was flanked on all sides by figuring out what to do with a newborn, so I chronicled that.

And just before my son was born, I thought maybe – maybe? – I’d be less of a mess this time around?  Maybe I’d have things a bit more figured out, and a day in the life post wouldn’t read like a desperate plea for help?

Once again, ha.

A Day in the Life of a New (Old) Mom … with Diabetes.

6.30 am – Hi, little baby!  Let’s do this feeding/changing diaper thing … again, because it’s not like 6.30 is the first time our tiny tomato goes off.  On the overnight, the baby wakes up around 2.30 and then again around 6, so we’re hardly breaking a fast when breakfast time rolls around.  The main diabetes thing I do at this point is check my CGM graph, because the baby is usually fussing for food, so even the 45 seconds it takes to check my BG is not happening.  (What – did you want me to lie and say I am totally on top of my diabetes stuff?  Nope.)

7.30 am – It takes me about 30 minutes to change and feed the baby, and then I go into the bathroom to clean teeth, find face, etc.  It’s at this point that I should be pricking my finger to check my fasting BG, but my alarm usually goes off (set for 7.30 am, just in case, even though it is redundant when pitted against the baby) and then I have to run back into the bedroom and turn the alarm off so that it doesn’t disturb the sleeping babe.  At this point, I forget what I was doing and am only positive I brushed my teeth based on the delightfully minty taste in my mouth.

7.33 am – Check my CGM graph again.  Showing 60 mg/dL.  I’ll check my BG officially when I go downstairs to make breakfast, but for now I need to get ahead of that low and have something to eat before the breastfeeding aftermath hypo moment kicks in.  Hi, banana.  I’ll eat you.

7.35 am – Time to wake up the Birdzone and get her sorted for school.

7.40 am – “What do I need to do again?”  “Brush your teeth, go to the bathroom, and put your clothes on for school.”  We have the same conversation every.  single.  morning.  Hasn’t changed in two years.  Yet she still wonders what the morning routine involves.  (Note:  now the morning routine involves my head popping off and the subsequent reassembly of aforementioned head.)

7.41 am – Dexcom alarm is still going off, but I drank the half-kicked juicebox that has been on my bedside table for the last three days.  Relieved it hadn’t turned to wine after sitting out that long.  Or maybe I wish it had turned to wine.  #jesusjuicebox

7.45 am – 8.20 am – This is a messy pocket of time during which Chris and I orbit around one another in the kitchen, making breakfast, making school lunch, assembling work bags, finding shoes, checking on baby (who is usually asleep in the bouncy chair in the kitchen, blissfully unaware of the circus), etc.  Usually, I check my blood sugar during this time, and most often calibrate my CGM.  At 8.20-ish, Chris and Birdy head to the bus stop and I think about combing my hair.  (I do not actually comb it, though.)

NOTE:  I forced myself to ditch the extra-strength Tylenol prescribed to manage post c-section pain because it rendered my Dexcom useless.  The data from my CGM is beyond instrumental in helping me keep my wits intact in this postpartum period.  Blood sugars are very unpredictable as I adjust from pregnancy insulin rates to postpartum rates, in addition to the chaotic ebb and flow caused by breastfeeding.  I could manage without the CGM, but it’s much, much easier to feel safe and like I have some semblance of a clue when the graph data is streaming.  Dexcom gives me the 30 lives I need on some days, Contra-style.

[And I do have a relationship with Dexcom – disclosures here.]

8.30 am – noon – My intentions are good in this block of time.  I usually boot up my computer and open my email, letting the messages come flooding in.  I read every single email, and in my head, I compose useful responses … that never end up being typed and sent, because this block of time also includes a baby who needs to be fed twice.  I use the breast pump once (to build a supply stash for when I start traveling for work again).  I try and check my blood sugar once or twice more.  I spend at least half an hour coordinating the next round of pediatrician appointments, surgery follow-ups, and attempts at assembling a medical team here in Rhode Island (moving my care away from Boston now that I’m done pursuing pregnancies … more on that another day).  Oh, and there are baby snuggles.  MANY.  Because I did not work this hard for a baby to not snuggle the hell out of him.

So basically, I get a lot of important things done in this timeframe as it relates to keeping my son happy and cared for, but I’m spinning my wheels in a lot of other departments.  That’s okay – it’s Baby Time for the next few weeks/months, and I’m happy about that.

Noon-thirty – Tomato Man and I go for a walk around the neighborhood (using the stroller on days when I’m trending lower blood sugars, and on days when my BG is more stable, I wear him and walk that way).  This walk is necessary because it gets me out of the house and ups my mental health and happiness.

1.30 pm – Hey, lunch would be awesome, right?  I’m still trying to cook more at home/make some vegetable-based options, so my culinary creativity is at a high (despite cooking talent remaining woefully low).  I am not ravenously hungry most of the time, but I do want to snack/eat a small meal every two and a half hours or so (modeling my behavior after that of my son’s).  I’m kind of into protein balls (uncomfortable phrase) these days, and one version I like a lot is a peanut butter/pumpkin seed iteration that’s easy enough on my blood sugars but packs a caloric punch that keeps me from falling asleep.  (Will post the recipe tomorrow!)

2.00 pm – Baby snuggles.  And let’s feed him.  Oh, and snuggle him again. And restock the ever-waning supply of diapers and wipes.

3.15 pm – Use the breast pump.  (Our boy lost a fair amount of weight after delivery, so our pediatrician has been following his weight gain with interest.  We’re back up to birth weight, but our doctor has encouraged us to supplement breastfeedings with bottles of pumped breastmilk in order to ensure the little guy is getting enough.  So when he’s not attached to me, physically, the breast pump is.  Thankfully, he bounces easily from breast to bottle, so we’re thankful he’ll eat in a variety of ways.  Also, if you have dissenting opinions on how babies should be fed, can we just agree that babies should be fed, and leave it at that?)

4-something ish – Birdy’s school bus comes roaring through the neighborhood, and she comes scrambling off it, regaling me with stories about first grade and how much she missed her brother.  “I missed you, Birdy!”  “Yeah, but I missed HIM!”

4.30 – 6.30 pm – Another mangled window of time during which the baby is fed, changed, and snuggled.  Chris usually arrives home in this pocket.  Birdy (and a cast of characters from our neighborhood) rotate from house to house on their bikes, the embodiment of every gang of kids on bikes from 80’s movies.  I remember that I haven’t checked my blood sugar in a few hours, so I do that.  Dinner is assembled.  Dishes are ignored.  Loopy builds a biplane.

7.30 pm – Birdy gets a bath or a shower, and while she’s in there, I charge my CGM receiver or my pump (depending on which one is more depleted).  I’ve been trying to stick with changing my pump site every three days (the reminder for the site change on the t:slim is very useful these days, as I forget my name, nevermind when I last put an infusion set in).  Changing the site is hard sometimes because I hate wasting insulin, and sometimes my reservoir (even half filled) will last four days without any trouble.  I like using every last drop.

8.15 pm – Birdy is tucked into bed.  (When she actually falls asleep remains the mystery.)  Chris and I start to get punchy, realizing we haven’t properly slept through the night in weeks, and we know another long night is on tap.  And then the baby wakes up because hey, it’s getting dark out, and that means it’s time to wake up!

9.30 pm – I look at my email, cry, and shut my computer.  I eat a yogurt and wonder if it’s okay to eat these chickpea things straight from the bag with a spoon.

9.31 pm – I grab a spoon.

10 pm – Medical onslaught time.  As I’m getting ready to close up for the night, I need to take my blood thinner injection (thank you, Factor V Leiden and c-section combination – three more weeks of shooting up and then I’m DONE), my blood pressure medication (back on that as of last week), check my blood sugar, make sure my pump has enough insulin to last through the night, make sure my CGM receiver is charged, and that my bedside table is stocked with a glass of water (breastfeeding makes me dehydrated as eff) and something to treat low blood sugars with.  Baby is fed and changed, and tucked into his proper bed (in our bedroom).

And as I’m about to fall asleep, I realize we made it through another day, and we’re adjusting the best way we know how.  The exhaustion will give way to more sleep, and eventually we’ll be a few months out from life with a newborn and more in the swing of things.  (I know I will miss the warm, snuggly newborn cuddles a ton.)

We don’t have everything figured out, because our son is completely different from our daughter, so what we knew to expect is braided with a hefty dose of “what the hell do we do with that?!” sort of sentiment.  I have realized that all the preparing we did for our second child doesn’t actually prepare us … we’re still hot messes of exhaustion and confusion and hope.

And I also realize that it looks like I’m into some kinky stuff, considering the bag of marshmallows on the bedside table.  Whatever.  When you’re hypo, anything goes.

This is Thirty.

This is thirty years with type 1 diabetes.

I used to think it would stop me from enjoying life.  Now I realize that I’ve lived with this disease for thirty years and have brought it down the aisle, on stage, and around the world with me.  It hasn’t stopped me from doing a damn thing … other than making insulin.  But that’ll work itself out in, what … five to ten years?

Enormous hugs to everyone living with diabetes.  You kick ass every day, even when you feel like you have no idea what you’re doing.

Four Chairs.

Our kitchen table has four chairs, and for several years, we had our family of three at the table for four.  But three chairs filled felt right at the time.

Except when it didn’t.  A few years ago, that fourth chair became this thing for me, like it should have A Person for it.  There was a feeling that someone was missing nagged me through many breakfasts, lunches, and dinners.  Someone was supposed to be there.  I had no idea who, but I knew someone was missing from our lives.

The empty chair started to hurt to look at, especially during the years of negotiating infertility.

But last week … on August 23, after two years of trying for a baby, after 38 weeks and two days of pregnancy, after staring at that fourth chair for all of those days and wondering if anyone would ever claim it, we finally found Our Person to fill the seat.

(His bum is very tiny at the moment, but he’ll grow into the chair eventually.)

Welcome to the world, my sweetest little boy.  We love you in ways and for reasons too numerous to count.

Just a Job.

“I’m just a medical assistant, so my job isn’t as important,” she said as she took my blood pressure and entered the data into my digital file.

“Seriously?  How can you say that?  You probably have more face-to-face moments with patients than the doctors do.  You set the tone for the appointment.  What you do matters.”  I paused.  “Take my blood pressure again,” I laughed.  “It probably just went up.”

She smiled.  “I guess it is important.  But not as important as the doctor.”

It’s strange how people think their interactions don’t matter, don’t have an influence on the patient experience.

When the receptionist checks me in for my appointment, she contributes to the tone of my appointment.  Even if she is asking me for my insurance information for the tenth time, or informing me of an outstanding balance on my account, or telling me that the doctor is running late today, the way she delivers that information colors the experience.

When the phlebotomist is steady-handed and double-checks the information on the blood vial label against my file, their attention to detail and dedication to comfort colors the experience.

When the medical assistant makes eye contact, engages the patient, and acknowledges that the data they are collecting is from a human being, not a lab rat, they color the experience.

When the clinician is on time and the appointment is not an exercise in redundancy and checked boxes on an electronic medical record but instead a discussion between a patient and a provider that influences positive health outcomes, that interaction colors the experience.

And when I’m on time, and I have the necessary and requested data from my diabetes devices, when I have my list of questions and concerns, when I pay my bill or file my claim, and when I’m respectful of everyone’s time and expertise, I color the experience.

There is no “just a …” when it comes to the healthcare experience.  Even when it’s not medically coded as a “shared medical appointment,” the appointment is still shared between the patient and everyone their interact with.  Everyone involved makes or breaks those moments for the patient and the healthcare team alike, with each person playing a crucial role in keeping the process effective, efficient, and evolving.

Everyone.

(EVERYONE !!!)

 

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