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Full Body.

The scar on my lower abdomen is close to healed, after six weeks of careful care.  The incision is evidence of the arrival of my son, the same place my daughter escaped from.  The skin above the incision is still swollen from months of pregnancy and oddly puckered due to surgery.  It’s not a flat, perfectly sculpted specimen of an abdomen.

But I try hard not to care.  My kids were created here.

The marks on my fingertips move every few days as I use a lancet to draw blood every few hours.  Sometimes the dots left behind look like I stuck my finger into a jar of ground pepper, other times they are light brown marks that appear to live deep beneath the surface of my skin.  But they represent moments when I needed to check my blood sugar and actually followed through on gathering that data.

When I look at them, I see evidence of me taking good care of myself.

The scaly patches of skin on my outer thighs are itchy and refuse to respond to lovely lotions and dermatologist intervention.  They are left behind by continuous glucose monitor sensors that I wear to keep tabs on my blood sugars throughout the day and night.  These skin issues are not comfortable or enviable, but the protection provided by streaming my glucose data helps me to sleep better.

My health is worth the inconvenient itch.

And, of course, there’s the shifting of my body, shaped by time and illness and exercise and pregnancies.  Baby weight.  Aging, even when I don’t remember to.  My leg muscles are softer, but eager to be used again.  My eyes have improved during this pregnancy, somehow.  My blood pressure is carefully watched.  My stomach is paunchier than it was 10 months ago.  I weigh myself to see what’s happened over the last six weeks and try not to get too excited or sad at the result.

But the number on the scale doesn’t define me.  Neither does the number on my meter.  Neither does my age.

… right?

I look at my body sometimes and feel a little embarrassed or ashamed because I don’t physically conform to what magazine pages and commercials suggest I should look like.  I’m not tall and willowy with shiny hair and slender arms.  And I admittedly care about the size of the pants or the cut of the dress.  It’s been harder than normal lately because I’m trying to recognize this new person in the mirror, the one who has carried two children and thirty years of chronic illness under her skin, never mind life’s normal wear and tear.

I’ve lived with body image issues that haven’t caused chaos but have given me pause from time to time.  Diabetes has forced me to see my body through a specific lens, not always rose-colored.  Sometimes diabetes makes me feel like I’m broken, unable to make insulin and struggling to create a child.  It’s weird to look in the mirror and see someone who doesn’t look sick but who has felt unwell physically many times, and who requires effort to stay emotionally well.

Other times, the diabetes lens makes me feel as if I have superpowers … like, shouldn’t I be dead because I don’t make insulin?  Every mile I’ve run or weight I’ve lifted stands in contrast to my unmotivated pancreas.  How has my body managed to stop producing a life-sustaining hormone and yet I’m still here?  Can’t I fly, too?  And melt steel doors with my eyeball lasers?

I have to remind myself that there are marks and imperfections on this body that I’ve fucking earned.  There are a lot of scars.  Some visible, others harder to see, but all of them, earned or self-imposed, have contributed to creating me.  This body is recovering from, responding to, reinventing itself in life, and that’s the image of my body I’m holding tightly to.

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.


Eleventy and #AccessMatters.

My blog turns eleven years old today.

I could say so much about the benefits of connecting with my peers and finally, after years, realizing I was not alone with diabetes.  I could fill a blog for eleven – perhaps twelve? – years with that sort of appreciation.  It’s been an excellent virtual coffee date over the last eleven years.

But today, I’m angry about some stuff.  And today, I’m especially grateful for a platform to share my thoughts from and a community of peers to share my thoughts with.

Yesterday, as I was having my son’s heart examined thoroughly via a fetal echocardiogram at Boston Children’s Hospital (standard screening procedure for moms with type 1 diabetes; every result was textbook fine, thank goodness), my phone was going bananas, pinging with information about a network bulletin from United Healthcare.  And upon combing through the info, it was gross.

The gist?

“UnitedHealthcare has reached an agreement with Medtronic to become the preferred, in-network durable medical equipment (DME) provider of insulin pumps for UnitedHealthcare Community Plan and Commercial members, effective July 1, 2016.”

This means that if you have UHC (“excludes UnitedHealthcare Sierra Health and Life Commercial members as well as all UnitedHealthcare Medicare Advantage members”), Medtronic is the pump they are offering and reimbursing.  If you use another kind of insulin pump, they will cover supplies while your pump is still in warranty and functioning properly.

“UnitedHealthcare will continue to cover insulin pump supplies for all brands of insulin pumps that our members currently use while their insulin pumps are in- warranty and are still functioning properly. They do not need to make any immediate change to their pump and will not transition to a MiniMed pump until their pump is both out of warranty and not functioning properly.”

But when your warranty is up, so is your ability to choose.

I appreciate the ability to choose.  I can’t un-choose diabetes, but deciding what tools I use to manage this disease is a choice I value highly.  Since I started pumping insulin in 2004, I’ve used Medtronic, Animas, and Tandem insulin pumps, and have had good experiences with them all.  I like them, as devices, for different reasons, and being able to switch to the pump that suits my needs best in different stages in my life has been important in taking care of me as a whole patient.

Having access to options has been instrumental in maintaining good health, and my quality of life.  Diabetes hasn’t destroyed me, mentally or physically, because I’ve had access to the care I need to survive.

United Healthcare asserts what sounds to me like a, “Wait, this isn’t a big deal, you guys!  You still have access to a pump; just THIS specific pump.”

“There has been no change within our medical policy for coverage of insulin pumps; this only applies to the type of device prescribed.”

It’s the “only” there that kills me.  Only the type of device?  Insulin pumps are very intimate, carefully chosen devices that are integrated into so many aspects of a person’s life.  Insulin pumps are at our jobs with us, and while we travel.  They are a part of every meal we eat, part of every blood sugar we correct.  They come to bed with us every night.  Mine is currently sitting on my hip while my child grows inside of me.

We’re not talking about t-shirts here; this is a medical device that is part of every moment of every day, and you’d better believe that access to having a choice matters.

I have a business relationship with Tandem Diabetes, and details of that agreement can be found here.  But, to be honest, this isn’t about a business relationship.  This is about my ability to access the care that drives the best outcomes for my health.

And ultimately, that’s what matters most:  access.


Spare a Rose 2016

From February 1 – 14, the diabetes online community is hosting our annual Spare A Rose campaign.  You remember that one, right?  The one where you send eleven roses instead of twelve on Valentine’s Day, taking the value of that saved rose (averaged out to $5) and donating that to the International Diabetes Federation’s Life for a Child program, which provides life-saving insulin and resources for children with diabetes in developing countries.

We need you.

Yes, you.

You’re part of this, you know.  If you’re reading these words, or any words written by a person touched by diabetes, you are touched by diabetes.  Maybe you’re the parent of a child with diabetes.  Maybe you’re an app developer looking to connect with the diabetes community.  Maybe you run a magazine that hosts health-related articles.  Maybe you’re a PR company that hopes to influence the diabetes community.  Maybe you’re a representative from a diabetes company, or a teacher who has a student with diabetes in their class, or a researcher who studies this disease.

We need you to help amplify the Spare a Rose message.  You can donate to the charity, share the Spare A Rose link with your friends and colleagues, and truly take this initiative, this passion – and our global community –  to a powerful new level.

If you’ve emailed a diabetes advocate, asking them to share your latest press release or to engage in your survey, please spare a rose.

If you work in the diabetes industry and you leave diabetes in your office when you go home at night, remember that people with diabetes don’t ever leave diabetes behind.  And that many people with diabetes struggle to gain access to the drug that keeps them alive.  Considering bringing this campaign to your office.  Please spare a rose.

If you are touched by diabetes in any way – the partner of, the friend of, the coworker of, the child of, the parent of, the neighbor of a person with diabetes – please spare a rose.

If you are part of the greater patient community, I’m asking you to walk with the diabetes community for two weeks and help us make a difference in the life of a child.  With your raised voices, we make a greater difference.  Please spare a rose.

This is where we shine, you guys; where we take care of our own.  Where we can take our collective power, not as people with picky pancreases but instead as people with full and grateful hearts.  Show your love for this community on Valentine’s Day by sending one less rose to a loved one and instead providing life for a child.

Flowers die.  Children shouldn’t.

Please spare a rose.

And please spread the word!


(This post is recycled, but the sentiment remains the same and the mission is just as important.  Show true love.  Save a child.)

Gadgets and Gizmos.

Getting dressed this morning and trying to shove an insulin pump and a Dexcom sensor and not map the silhouette of my dress with pump tubing was an exercise in frustration, and that song from The Little Mermaid kept going through my head.

“I’ve got gadgets and gizmos aplenty … I’ve got whosits and whatsits galore …”

But I sat at breakfast during my meeting today and elected tea over actual food because my blood sugar, despite excellent technology and fastidious care, was elevated and stubborn about staying that way.  Despite best efforts, diabetes was still a pain in the ass this morning, and there wasn’t much I could do about it.

And that urge for a cure, some version of it, became strong.  Come on, research.  Come on, artificial pancreas teams.  Come on, islets.

I want more.


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