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One, Stupid High.

On any average day, my glucose meter results are just mine.

… mostly.  I worry about lows while I’m driving my daughter or traveling alone, but while a low might be witnessed by someone else, it’s my body that goes through the experience.  (Not to minimize the experience of watching diabetes from a distance; that’s a whole other post.)  The long-term influence of diabetes is still a process-in-progress, but on the whole, the individual meter results are mine to mitigate.

Right now, though, every number on the meter isn’t mine and only mine.  These days, every high and low and all the bits in between belong to me and the baby I’m creating.

No pressure.

I take this job very seriously.  It’s easier to play by every, single rule during pregnancy because there’s a definitive start and end to this process.  40 weeks marks the duration of an average pregnancy, which means that I need to be on the ball, knocking it out of the park, and other sports analogies for that timeframe.  It’s important to plan ahead, if you can, and it’s important to keep at it once the baby is born, but diabetes is truly only shared in tandem for 40 weeks.

Which is why one stupid high is enough to send me into a spiral of panic and wtfuckery.

Yesterday, things got stupid for a few hours and I saw a number on my meter that made the string of curse words come easily.  A pump site that needed to be changed and a Dexcom sensor that was repeatedly throwing wonky numbers and a pregnancy that is moving into the “upped insulin resistance” phase didn’t help matters.  It took an injection of insulin and hours of frustration (because my body thought, perhaps, I had injected water instead) for the number to move in the right direction.  The anger was intense.  As was the guilt.

I know that days of highs, not hours, adversely influence a developing baby, but holy shit.  This wasn’t just MY HIGH but it was OUR HIGH, and that left me feeling helpless.  The best laid plains of NOD mice and women still had me higher than I wanted to be and higher than I felt safe being.  I can deal with  blood sugar fluctuations as a soloist, but bringing a baby into the mix makes me want to make my standard deviation less … deviant.

Eventually, the numbers started falling, and I cried – a wimpy, gross cry – when I saw the 74 mg/dL on my meter because it meant that I was back in the game.  23 weeks left to go, give or take, before diabetes is “all mine” again.

(Note: Crying is not limited to blood sugars.  I also cried when the mailman asked me to sign for a package.  Hormones are weird.)  

Diabetes Privacy?

I was thinking about diabetes privacy this morning while I was poking through the archives, and came upon this post from Diabetes Blog Week last year.  (Here’s a full list of the contributions generated by that prompt.)

What do you share about your diabetes? And what is on your List of Absolutely NOT Sharing, diabetes-wise?  For me, I don’t share my A1Cs with any regularity. Because as thick as my skin is in some respects, it’s admittedly very thin in others.

But hell yes I’ll post a photo of a 24 hour no-hitter on my CGM graph, because I’m proud of that accomplishment and I want to document it for my own sake.  Sometimes I feel a little creepy about posting a photo like that because it does not illustrate a true “day in the diabetes life,” but it’s nice to freeze frame a moment that I feel proud of instead of looking at a graph of Ms and Ws and throwing up my hands* in frustration.

Diabetes doesn’t always play nice, and I don’t always have a calm head.  Sometimes I go full Veruca Salt-rage when the effort into diabetes management doesn’t produce a stable flat line but instead reduces my glucose meter to what feels like a random number generator.

Diabetes goals feel really personal to me.  Back in 2009, when I shared that my A1C wasn’t under 6.5% when I conceived my daughter, I received criticism for not having my numbers under “good control.”  What gets lost in translation is the why of some decisions, like I was aiming for a slightly higher A1C earned without a pile of debilitating low blood sugar events.  My medical team and I had reasons for making specific decisions, ones that I don’t feel the need to constantly have to defend.

So I remain quiet about a lot of diabetes specifics.  I’ll share what medications I’m taking and what devices I’m wearing, but where my high alarm is set at on my Dexcom receiver might not be publicly shared.  I have my A1C taken regularly, but I don’t post a running tally of it anywhere.  The specifics of my data – blood sugar or blood pressure or weight or CGM values – do not define me as a person and do not dictate my ability as an advocate.

But seeing diabetes in context, the real juggling act that takes place to take a crack at making proper sense of this disease, is what I appreciate most about our community.

To revisit a thought from years ago:  “diabetes isn’t a perfect math where you can just solve for X.  Usually, we’re solving for ‘why.‘ And part of that equation is acknowledging, and appreciating, the sum of our community and what we document, every day.”

 

 

* this phrase has always grossed me out – “throwing up my hands” – because it’s hard not to picture someone throwing up their hands, vomit-style.  

Guest Post: The Cost of Staying Alive.

Charity Shuster-Gormley is a native Vermonter who currently works as a mental health worker in a psychiatric hospital. She was first diagnosed with type 1 diabetes in the summer of 2000 at 15 years old. Charity holds a Bachelors degree in Psychology and a Masters degree in Marriage and Family Therapy. She lives with her husband, their 6-year-old Dachshund Amos, and 10-year-old cat named Bella, and today she’s taking over SUM to share her thoughts on what it costs to stay alive.

  *   *   *

Since the age of 4 I have lived with chronic health conditions. It started with an ear infection at the age of four, which developed into a chronic heart condition called a complete heart block resulting in the need for a pacemaker at the age of 25. At the age of 15, I had corrective surgery for my spine, which had developed serious scoliosis. Five weeks after this surgery, I was in the hospital again being diagnosed with type 1 diabetes.

It was not until about the age of 24 that I started to experience the cost of staying alive, first-hand. Up until then I had been able to stay on my mother’s cushy state health care coverage provided to her as an employee of the state of Vermont and to me up until the age of 24. I knew that my insulin was priced at between 50-100 dollars a vial when I was first diagnosed but until I had to figure out insurance on my own, I had this sense of safety and worry-free mindset and did not think about costs, or how I was going to get supplies.

My first experience a type 1 diabetic with my own insurance was being on Medicaid due to being in college still and the state deeming the insurance my college provided inadequate. There was this great program that was attached to it that I was able to sign up for that provided full coverage for all appointments and supplies that were diabetic related. Then there was the day I received a bill for my testing supplies. I called the insurance inquiring as to why I was being billed for this when it was supposed to be covered at 100%. I was assured by the agent I spoke with that this was indeed an error, and it would be taken care of. I breathed a sigh of relief as the panic of being a full time college student with virtually no income subsided.

Several days later I received a phone call from another agent. They proceeded to inform me that they had spoken with the pharmacy director and that ACTUALLY only insulin and insulin delivery devices were covered under the program I was part of. When I reiterated that this was not was the guidelines of the program stated and asked the reasoning that my testing supplies would not be covered the reply I received was this:  “Testing is not life necessary, ma’am. Only insulin and what is needed to deliver the insulin is.” I was in a state of shock at hearing this. I hung the phone up in stunned silence, still not believing what I had just heard. This was when I first felt the feeling of having to fight for my life.

Today my insulin if I was uninsured is going for $300 a vial. I am working in a psychiatric hospital as a mental health worker and not as a therapist in a mental health agency not only because of my background, but because the insurance I receive here provides me the coverage I need to be able to live. Turning down jobs due to the insurance being so poor or so expensive or both has been a very real reality of mine.

Hearing the CEO of Eli Lilly state that insulin prices are rising due to diabetes being such an expensive disease likely left me looking the closest to Medusa or Broom Hilda that I ever will. My husband turning to me and stating his perception that I am essentially renting my life for approximately $30 a day makes more steam come out of my ears at this thought then Old Faithful produces. Thinking about presidential elections and explaining to others the fact that my life is not just in my hands but in a whole countries who’s biggest concern might not be staying alive … I wake up each day, never giving up hope and faith that the majority of our country desires each and every human to live healthy lives, not having to feel anxious, feel out of control of their health, wonder if they will have what they need to successfully manage their health or have what they need to stay ALIVE. Unification and our voices are a key to the movement towards change I believe.

Our lives are NOT for profit. When you meet a person living with chronic illness ask yourself, “Do I really understand?”

Gimme a Beet!

Beets haven’t always been top-of-preference for my palette.  I read somewhere that people either love the taste of beets or think they taste like dirt, and I used to be in the latter camp.  But these days, beets are most desirable and I am looking for a calendar dedicated entirely to them, preferably wearing suspenders … and only suspenders.

Problem is, I had no idea how to cook them and preparing them leaves my kitchen counter looking like a game of Clue.

“It was in the kitchen!  With the carving knife!  And included spinach salad … ?”

But the Internet! This is what it was made for: Googling problems and then solving them with pixel power.  A quick search for “simple beets recipe” on Google images brought me to photos, and then to recipes, that were manageable with my limited kitchen talents.  (I prefer to search by images because if the image looks simple and easy, then the recipe hopefully is as well.  Also, images help me weed out evil food things, like weird, crumbly cheeses.)

Raw beets are what I’m craving, so a simple wash, peel, slice-and-dice plan of attack works perfectly and makes the beets easy to toss into a spinach salad.  I’ve read on several sites that cooking the beets strips away a lot of their power (read: they can’t fly and their x-ray vision goes to shit), but this salad looks awesome and I’m trying this one later today (minus the crispy toast bit).

Desperately, this morning I sliced and ate a beet on top of toast with cream cheese.  Which might read as disgusting and vile, but slap some olives on the side and chase it with a decaf iced coffee and that meal fast becomes a breakfast my pregnant-self craves, while my pre-pregnancy self shudders in the corner and makes faces of disgust.

Differences So Far.

The differences between Kid 1 and Kid 2 will be stark, I’m sure, and it’s starting with their respective pregnancies.  This attempt is very different from my first in some ways, but refreshingly similar in others.

There was morning sickness.  Not actively throwing up, but a moderate-to-high level of nausea that kicked in first thing in the morning and stayed active throughout the entire day.  (“Morning sickness” = all day long sickness)  With my daughter, I never had a moment of queasiness, but this time, I ended up with an Amazon subscription to Yogi Ginger Tea, which was consumed for three months straight in order to keep my stomach contents settled.

The bump was visible much earlier this time around.  Around eight weeks, there was bloating that looked suspect, and by ten weeks, there was an indisputable bump.  Now, at 15.5 weeks, yoga pants fit fine but buttoning my jeans that fit loosely at Thanksgiving is a thing of the past.  I have one pair of maternity pants but I’m scared to look at them but they have been staring at me, all sultry and potentially roomy enough.  Hey, you.

Preparing my diabetes management for Birdy was more of an issue than conceiving here, which was the opposite problem with t his pregnancy.  My A1C has been in nice, happy baby range for a long time now; it was adding the baby itself which became the problem.  I’m happy knowing my numbers were in-range well-before I conceived.

To that same end, I spent two years “pretending” to be pregnant half the time, so I already have a significant level of “tired of diabetes bullshit” baked into this pregnancy.  I’ve already been testing a pile of times a day and tweaking food, exercise, and basal rates as if I were pregnant, so when I actually became pregnant, I was more inspired to continue on with vigor, but a little tired at the same time.  It’s a lot of work, preparing for pregnancy. It’s even more work to actually be pregnant.  I’m preemptively a little nervous about post-partum diabetes burnout, and trying to line up a support approach that will make that transition gentler.

The infertility issues building up to this pregnancy have made it harder to fully invest in these moments, too.  I am scared to enjoy the feelings too much.  The rounded belly is something I feel the need to hide more than I did the first time around because I’m afraid to say, “Yep, I’m pregnant,” in case something happens.  I did not feel this way at all the first time, as I had no concept of it not working out.  Of course you get pregnant.  Of course you give birth.  Direct line from start to finish.  But now, I’m acutely aware of the different paths that this journey can take, and every doctor’s appointment comes with a holding of breath and then a relieved release.

My medical team is slightly different.  My endocrinologist is the same as before (the pregnancy team happens to include my regular endo at Joslin, so that was easy), but my OB/GYN is different.  The new OB seems very smart, and capable, and hopefully she views me in the same light.

The drive to my medical team is also the same:  too long.  I live in Rhode Island and see the team at the Joslin Clinic for my pregnancy care, so for now, it’s an appointment every two weeks.  So far, I’ve been able to line up my OB/GYN appointments and my endo care on the same day, making for a long commute and a long day every other week, but at least it doesn’t require two separate trips.  Once I’m in the third trimester, I’m sure I’ll want to rip Joslin off its foundation and move it to Rhode Island, but for now, the commute is doable.

15.5 weeks and the kiddo is making his presence known in a roundabout way. #diabeticpregnancy

A photo posted by Kerri Sparling (@sixuntilme) on

Because of pre-eclampsia in my first pregnancy, it’s an issue that’s already being addressed now.  My high-risk OB had me do a 24 hour urine collection a few weeks ago to establish a baseline, and she recommended that I take a baby aspirin daily, starting at 13 weeks.  My at-home blood pressure monitor should arrive today, and that should help me keep track of things at home.  Hopefully it will not be an issue.

So far, with my eyes, everything looks good and there’s been a discussion about potentially delivering vaginally, depending on how things progress with any retinopathy issues, etc.  That won’t be determined until closer to my delivery date, but it was nice to hear that my eyes looked fine enough to discuss delivery as an “option.”

The Factor V Leiden is being proactively managed as well, with doses of blood thinner in my medicine cabinet for use before long flights, and a hematologist on call as part of my medical team.

My issues with skin irritation and adhesive allergies have been a big problem with this pregnancy because I do not want to take any breaks from my pump or my CGM, but compromised skin integrity makes real estate an issue.  It’s challenging to rotate sites appropriately when my skin is still unhappy from devices put there weeks ago.  (Itch, please.)

And blood sugars have been predictably unpredictable.  The lows during the first trimester were epic, as expected, and sometimes took an hour and a half to two hours to fully escape.  My current daily dose is only slightly higher than my pre-pregnancy dose, but I’m sure it will climb once I’m deeper into the second trimester. (But, as a bonus, the Tandem pump holds 300 units, which will serve me well when insulin resistance does start.  With Birdy, I was up to 100 u of insulin per day, over triple what my pre-pregnancy TDD was.  If that’s the case this round, at least I don’t have to swap the cartridge every day and a half.  Also, here’s my Tandem disclosure.)

But the biggest different this time?  Is that my daughter is excited, too.  “Can I talk to the baby?” she asks, pressing her face close to my abdomen and whispering a secret of some kind to her sibling.

 

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