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Posts tagged ‘type 1 diabetes’

Bliss Balls.

Do you know what bliss balls are?  I had never heard of them before.  There’s a coffee shop near the beach out here that sells these bliss ball things.  They look like desserty meatballs and are kept in a glass jar near the cash register.  If you’re sleep deprived, they look like pets held captive by the bakery ladies.

Chris bought one on a whim, assuming it would taste like garbage and we’d laugh about eating balls, but instead we thought it was delicious and felt ashamed at our immaturity.  To reclaim adulthood, we decided to attempt making our own bliss balls at home.

The sign at the coffee shop claims the ingredients are oats, peanut butter, honey, pepitas, coconut, and cinnamon.  The girls who worked at the coffee shop had no idea how much of each ingredient to use (Of course I asked; I’m baby-wearing and existing without sleep … no shame in going full-Mom and asking the college kids how to make bliss balls, right?), so I had to wing it based on the ingredient list alone.

I’m not a good cook, but I am good at baking, so I decided to give these bliss ball things a try.  The only missing element was that I didn’t have a recipe to follow.  Instead, I combed the web for different recipes and mushed them together, eventually following this one mostly, only tweaking it to fit the ingredients on the coffee shop sign.

Ingredients:

1/4 cup honey
1 3/4 cup peanut butter (the oiler, the better)
3/4 cup shredded coconut
3/4 cup pepitas
cinnamon (to taste)
1/2 teaspoon vanilla extract

Directions:

  • Put all of these items, except the pepitas (have you Googled that word to find out what the hell pepitas are yet?  I’ll wait …), into a bowl.  Stir everything together.  The mixture will resemble cookie dough.  Or meatloaf.  Cookie meatloaf.  (Mistyped that as “meatdough” initially.  Gross.  Going with it.)
  • Take the meatdough mixture and taste it.  Does it taste kind of like a snickerdoodle cookie with the texture of an almost-granola bar?  (My descriptions are not good when it comes to bliss balls.  On the whole, I think they look like meatballs or truck nuts, but they taste so nice and they are so mellow on my blood sugars that an embarrassing appearance becomes a non-issue.)
  • If the mixture tastes right to you, add the pepitas.
  • Shape the meatdough into round balls about the size of a golf ball and place them on a cookie sheet.  We put ours into the freezer for 20 minutes, then moved them to a tupperware dish and layered them in there, separated by sheets of parchment paper.
  • After about two hours, the meatdough will have “set” and the bliss balls will be all blissful.  Eat them with your face and forgive them for what they look like.

(Note:  I do not have an artsy-bloggy photo of the bliss balls, as they do not photograph well.  Use your imagination.  Or look at this Pinterest board for hints on how other people have done this sort of thing will more success.)  

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.

Releasing the Kraken … Into Our Home.

… he’s definitely not the Kraken.  That nickname will never stick because so far, our littlest friend is mild mannered.  He’s more Clark Kent than Kraken.  (Mixing my superheroes and myths this morning; feel free to blame the sleep debt and my attempt to repay it with caffeine.)

But he’s home, and even though he’s a sweet boy, he’s still an infant and our house is ROCKED by his presence.  My body remains equally as rocked by his escape, and my diabetes management is so confused that my pancreas, were it to have a head, would be scratching it with confusion.

OUR HOUSE:  Remains in the middle of our street, only it’s bursting at the seams with burp cloths and tiny little articles of clothing that require origami skills in order to snap up.  The laundry this little man produces is astounding, as are the number of diapers he rips through … and the number of times he’d like to eat during the course of a day.  For someone so small, the baby came with a lot of stuff.

(But I’m so glad he’s here.  I’ve never been so happy to have my house turned inside out in my life.)

MY BODY:  Is slightly less than a wonderland.  I talked about the c-section and cannot stress enough how different it was from my first surgical birth experience.  When I examined myself after having Birdy, I had a sizable scar and serious gas pain, but didn’t feel as though I’d been put through the wringer.  Ringer?  (W)ringer.  This c-section was very different because it felt busy during (lots of pressure and they actually needed to use the vacuum to assist in removing my son from the womb, poor kid) and the aftermath was not pretty.  I had a lot of bleeding after this one, more than the first time.  I also didn’t get a good look at my scar, etc. while I was in the hospital (they are smart to keep full length mirrors OUT of the postpartum recovery rooms) so I saw the mess for the first time when we came home.

Holy shit, the bruising.  The three or four inches of skin real estate underneath my incision was entirely black and blue and it looked as though I was wearing blue underpants.  I (am embarrassed to say) that I cried when I saw it because it looked so frigging VIOLENT.  Thankfully, 15 days later, the bruising is entirely gone and all that remains is the incredible shrinking uterus and the healing incision, but for the first week or so, I had a hard time checking the incision because it looked so Frankenstein’s monsterish.

And aside from the obvious diabetes stuff, I’m currently taking a blood thinner (thank you, Factor V Leiden) for six weeks, and am also unable to drive for six weeks.  The blood thinner is a little painful but totally manageable (one injection every night – easy enough).  The not driving thing is MAKING ME GO BANANAS because my freedom is entirely MIA.  I’m relying on friends and family for trips to the pediatrician, picking up prescriptions, getting groceries … every little thing requires assistance from a volunteer chauffeur.  And since I don’t want to trouble anyone more than I already have to, I’m placing some screwball orders on Amazon … like for the dry erase board eraser required on my daughter’s back-to-school list.  Or the long sleeve, size 0-3 month onesies for my son.  Or coffee, damn it.  I’m really excited to be able to get back behind the wheel and reclaim some semblance of independence.

DIABETES HEY OOOOH:  I cannot complain about how diabetes did its thing during the 38 weeks of pregnancy.  I didn’t have any tragic lows, there weren’t unmanageable highs, and the lack of pre-eclampsia was an excellent change of pace for this round.  During delivery, even though I was terrified, my blood sugars stayed solid.  And throughout my stay at the hospital, my blood sugars were without issue.  It was kind of awesome, and surely will stay that way forever, right?

HA HA HA HA HAAAAAAAAAA … now that my placenta has been kicked out of my womb and I’m breastfeeding a newborn, all kinds of diabetes hell has broken loose.  My blood sugars – once calm and dare I say predictable? – are now pinging and ponging all over the damn place.  My insulin:carb ratios are 1:20 (versus pre-pregnancy 1:11 and during pregnancy rates as low as 1:5) and my basal rate is 0.3u per hour (versus pre-pregnancy of .5u and during pregnancy rates as high as 1u per hour).  And absent the breastfeeding, these rates would probably hold tight for a few weeks until they started to require increasing, eventually bringing me back up to where I was pre-pregnancy … at least ish.

But breastfeeding is its own circus.  The act of breastfeeding does not make me hypoglycemic, but the act of producing milk does, so I’m going low mostly while my milk supply is filling up.  If this was a predictable cycle, I could plan snacks/meals around my son’s appetite and my anticipated refilling, but the cycle isn’t one I can map.  I can’t even guess.  Some times, I go low 15 minutes after feeding him.  Other times it takes up to an hour and a half for the low to hit.  I’m not sure when I should eat, causing my CGM graph to look all Ms and Ws.  If my experience with Birdy helps inform this round, I should have a more predictable blood sugar response around the time that my son is a month old.  Which means that I have two more week of letting my body ebb and flow and get all confused before it aligns to some kind of schedule.

The madness of a newborn added to the mix of an already all-over-the-place family is exactly what we had anticipated.  We’re exhausted.  (While driving home from a pediatrician appointment, Chris turned to me at a stop light and asked, “This is really happening, right?  Like this isn’t a dream?  We’re actually driving right now?”  The lack of sleep is like we’re on the tumble dry setting in the dryer, all jumbled and confusing and warm and is this real life?)  We’re adjusting.  (Birdy is doing her best to make sense of the new little creature in our house.  She loves him.  But I’m on the watch for sibling angst as well.)  We’re grateful.  (Issues like a messy house? Exhaustion? Sore body?  Bring those issues on, because I’m happy as hell to have these as my problems.)  And we’re in love with this little guy, who despite being only 15 days old, feels like he’s been part of the party forever.

 

Being a Rotten Patient.

Yesterday, I was a rotten patient.

At this point in my previous pregnancy, I had already been in hospital on bedrest for two weeks, so this whole rolling around on the “outside” while a few days shy of 37 weeks pregnant is new to me.  The emotions I felt on bedrest were really volatile and I cried a lot and HEY that same shit keeps happening even though I’m not on bedrest currently.  Which means that my third trimester experiences are consistent, at least emotionally.

Which sets the stage for yesterday. I had an appointment at the maternal fetal medicine offices and then at my endocrinologist, both up in Boston.  Usually, the ride takes me about an hour and 45 minutes, but I give myself 2 hours and 15 minutes every time, to anticipate traffic.  Yesterday, the ride took two and a half hours because of wicked traffic on Brookline Avenue, which made me late for my scheduled ultrasound.

I do not like to be late.  And yesterday, being late made me all emotional.  My car crawled up Brookline Avenue while I imagined having to reschedule my appointment for the following day, making the stupid drive all over again.  By the time I pulled into the parking garage, I had six minutes to find the right hospital wing and check in for my appointment.

Which, of course, I did not do efficiently.  Late pregnancy hormones and emotions have my brain mostly scrambled, so I ended up in the wrong wing of the clinic, nowhere near where I was supposed to be.  My blood sugar started to tumble at this point, bringing emotions even more to the surface while I left a trail of glucose tab dust along the hallways of Beth Israel.  Add that to the fact that I was late and mildly lost in the myriad of signs and corridors and I lost my cool.

Man, I felt stupid.  I was crying while waddling through the hospital, asking random people how to get to the proper hospital wing.  Their directions weren’t making sense to my slightly hypoglycemic head.  I could not pull myself together, awash with frustration and embarrassment and unable to control the emotional maelstrom swirling around me.  I was unjustifiably angry that the best care for myself and my kid included a four hour road trip for every doctor’s visit.  I was so tired from the low blood sugars that kept me up from 3 – 5 am and were the most symptomatic I’ve had in ages.  I was angry that I couldn’t guarantee safety for my child as a result of my own health garbage.  I was afraid that the stress of the moment was kicking my blood pressure into dangerous ranges.  I was a frightful mess and it wasn’t anyone’s fault but mine but holy moly, I was blowing up balloons by the dozen for this ridiculous pity party I was throwing for myself.

By the time I arrived at the right place, I was 15 minutes late and trembling.  And angry.  So when the nurses were waiting outside of the bathroom to grab me for my appointment, I snapped at them.  When they took my blood pressure while I was crying (could NOT stop for some reason), I knew the result would be elevated and would trigger a whole catalog of panicked responses from my healthcare team.  Of course it was high, and of course I snapped at them again.  Not their fault that I was late and my BP was high, yet they were the unfortunate recipients of my rage.

When the nurse I’ve been working with and a new doctor came in to discuss the results of my ultrasound (baby is fine) and my blood pressure (elevated for reasons I knew but they couldn’t pretend it couldn’t be a symptom of preeclampsia), I was still ranty and snapping.  I could not calm down and I felt terrible – TERRIBLE – that I was lashing out at a medical team whose purpose was to protect my health and the health of my baby.  But I still couldn’t get my shit together and acknowledge that for more than five minutes.

I was a rotten patient, all frustrated and angry.  (The ultrasound technician told me it was okay and that they see a lot of emotions during appointments, and I felt myself simultaneously apologize and then get all upset again.  No control.)  I snapped at healthcare professionals who were not to blame for my terrible mood.  I could not control my emotional responses to their reasonable requests.  I’m embarrassed at how I acted.  I hate admitting all of this.

The appointment circuit was finished later that afternoon, after everyone had reached the conclusion that I was able to go home until the next appointment (later this week) and reassess then.  I apologized to the people I had acted bananas towards and drove home, hoping to be more emotionally stable the next time.

I need to see this pregnancy through safely, but the last nine months have really opened my eyes to what I need to receive, as a patient, and just as importantly, what I need to bring to the table, as a patient.  Sometimes I can’t effectively perform as a full-time pregnant person, or a full-time person with diabetes (and clearly I’m struggling with doing both of those things at the moment), and I need to own that part of my healthcare experience.  Or at least stop crying in the stupid elevators, making everyone on there with me think I’m about to give birth in front of them.

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