To sit in a room chock full of women (weird description but I'm leaving it there) and be able to blurt out strange and potentially awkward questions about how diabetes affects life as a lady? All while surrounded by supportive and understanding women who also have diabetes?
That pretty much sums up my weekend in Raleigh, NC for the Diabetes Sisters Weekend for Women conference.
I've attended one other Diabetes Sisters event, and the same sort of sentiment applied to this most recent one: it's
oddly comforting to be in a roomful of people who "get it." Especially people who "get it" as "it" pertains to being a woman with diabetes.
I was in attendance to present about diabetes and sex. Okay, fine, it was billed as "SisterTalk: Creating Better Relationships & Marriages, Moderated by: Rhonda Merwin, PhD; Panelists: Brandy Barnes, MSW, Daphene Kimball, RN, Anna Norton, MS, Kerri Sparling," but it opened with discussions about intimacy and diabetes, because that's what was on people's minds. Topics ranged from "How do you disconnect from/deal with diabetes devices in the bedroom without feeling owned by them?" to "How do you strike a balance with extended family members who are over-involved/judgmental/uninvolved with your diabetes?" Despite the fact that the panel discussion was presented to a large room, the discussions were close and intimate (and better left un-blogged), and it was a real honor to talk with the attendees alongside my fellow (very entertaining!) panelists.
Other sessions at the conference included Smart Sisters Live Longer: Unlock the Secrets of a Long, Happy Life with Diabetes, where three panelists shared tips on living a long, and healthy, life with diabetes. Panelist Connie Hanham-Cain, RN, BSN, CDE passed around her recently-earned Joslin 50 Year medal, and it struck me that even though I feel like I've had diabetes forever, I was only halfway to earning mine. But seeing those women on-stage, holding their own and owning their diabetes, inspired me.
Riva Greenberg also conducted a session on Igniting Your Diabetes Power, encouraging women to tap their strengths in order to best-manage their diabetes. (It was in here that I met a new friend, Brittney, and her 8 month old baby girl, who served to ignite my ovaries while Riva was igniting diabetes power. Adorable kid.) Riva is an amazing speaker and it was such a pleasure to sit in on her session, watching her work the room. Unfortunately, I didn't have to chance to attend the sessions hosted by fellow DOC'ers Amy Tenderich and Ginger Vieira, but from what I heard and saw through the Twittersphere, their sessions were fantastic.
During the lunch session (with keynote speaker Mother Love, whose poignant and entertaining speech about her journey with type 2 diabetes brought the audience to a standing ovation), a tally of "years with diabetes" was totaled:
That's a powerful tally. (And of course I don't know how many women were actually in the room. That would help, eh? Instead, let's just pretend there was someone who was really, really old and has been living with diabetes for 453 years. Their A1C is badass.) And seeing that number embodied by smiling faces is more than inspiring:
The Diabetes Sisters events are great for reigniting and inspiring, but it's also an opportunity to meet some really amazing women who just happen to have diabetes. And who just happen to be awesome.
The next event is in San Francisco, CA in October, so check it out if you're in the area!
[Disclosure: The team at Animas made it possible for me to attend this event, and they paid my travel, lodging, and expenses. Full details on my relationship with Animas here. Also, if you're interested, Pingu dances pretty well.]
Memorial Day is behind us, so that means summertime has officially begun. Bring on the white pants, white shoes, Will Smith song references, and ... diabetes devices? YES! Abby talks about being an adult, sporting diabetes devices, and dressing for summa. I mean, summer.
Here in Vermont, it's beginning to look a lot like summertime. Temperatures are hovering in the 70s, occasional 80s, with the occasional crazy 20 minute afternoon thunderstorm thrown in. I love summer in the Northeast. I like that the temperature is perfect between 5 - 7pm, and now that I'm working grown-up hours, I can sit in air conditioning during the hot,hot mid-day sun, but then get to go outside and enjoy the weather after work. (I love sleeping with my windows open to the sounds of crickets and random people driving into the condo parking lot.)
For the past four summers, I have been at Clara Barton Camp. Basically from June to the end of August, I was surrounded by diabetes. This also meant that my summer wardrobe does not have to be pump-friendly or "professional." Most of my summer attire, since 2008, has consisted of gym shorts and t-shirts. (This is an ultra-friendly pump hiding combo. Clip it on the shorts waist band. Clip it on your sports bra. Clip it on your shirt collar, clip it on your sneakers, wear it in a child-size pump pack outside of your shirt or as a head band - all completely valid pump storage options at diabetes camp.)
But I'm not at diabetes camp this summer. I'm a grown up now, with a grown up job. Which is making my summer wardrobe in need of an upgrade.
Today I wore shorts outside to read on a bench in the sun. My pump site was showing on my thigh. I didn't even think twice about it, until I stood up and realized my neighbor was on his porch and probably saw the little pink sticker stuck to my leg (he's a doctor, so for some reason this eased my mind a bit).
A lot of us blog about diabetes and fashion. The amount of tricks we have to hide our d-gear (especially girls) is endless. I'm fine with hiding it, and I'm also fine with showing it off, but I'm generally a hider when it comes to my pump. You will rarely find a picture of me and be able to spot my pump unless I'm surrounded by d-people, and even then it'll be a glimpse of tubing here or there. I'm not ashamed; I just feel more comfortable with it tucked close.
So this summer will be exciting. I will wear dresses, shorts, capris, tank tops (not all at the same time, and not at work of course - health care dress codes and all that) and if my pump shows, so be it. I probably won't be wearing my tally-gear outside of my clothing in public ever, but I also won't be afraid to wear a sleeveless dress with an arm pump site.
* * *
Rock the arm site, Abby. Sometimes you just need to rotate the real estate options, you know?
Babies, babies, everywhere! In particular, there are babies in this month's issue of Diabetes Forecast, with a focus on pre-existing diabetes and pregnancy. I'm very proud that BSparl and I had the opportunity to share our story with the Forecast readers, and that the photographer who visited our home wasn't too bothered by the cat hair.
(One quick note after reading through the "Guide to Pregnancy" article in the magazine: Diabetes is tough. We know that. Diabetes and pregnancy is tough, amplified. But don't let the long article about "what could happen" sway you if you are planning to pursue a pregnancy and you have diabetes. The information in that article is important, accurate, but can admittedly be overwhelming. Not all diabetic pregnancies encounter the same kinds of complications that mine did - everyone's experiences vary. Just know that information overload comes with any pregnancy, and diabetic ones are no exception. We may get some added bonus worries, but the end result of our pregnancies can be just the same as the pregnancies of non-diabetic women: a healthy baby. Take all of the information you read online in stride, including the stuff I've posted here. It's a lot of hard work, but like they say, it's so, so worth it.)
And with that, I'm off to give the BSparl a snuggle.
Terrible habit, sarcasm. Especially the "your mom" retort. Like when my college roommates are out at the bar and someone asks for another beer. Instantly, "Your mom wants another beer." Immature retort? Indeed. But almost reflexive at this point? Unfortunately, indeed again.
(This intro has a point - bear with me.)
This morning, I woke up with my first bad low in a while. For the last month or so, I haven't seen lows worse than 55 mg/dl, and my sensitivity to the symptoms seems to have increased a bit. But while the lows of the last few weeks have felt mild, this morning's 49 mg/dl raked me over a little bit.
I woke up feeling groggy and warm, despite the air conditioning and the fact that I'd slept about seven hours straight. (Yay for Sleeping-Through-the-Night-in-her-New-Crib BSparl!) The corners of my mouth were numb and I felt like my whole brain was encased in cotton balls. I reached for the black meter case and brought it close to me in bed. Fully intended to test. But instead fell back asleep for a few minutes, with my meter snuggled against me.
Once I did wake back up, it had been another eight minutes. And my symptoms were progressing, giving rise to shaking hands in addition to the cotton ball veil. But it's strange, where my brain goes when I'm low. I had a juice box right on the bedside table. I knew I was low and didn't need to test to confirm, but I was on some kind of OCD autopilot. I had to test. Instead of grabbing the juice from beside me, I instead grabbed my meter from the bed, walked out into the kitchen, and set up the machine on the counter top.
"Okay," I said out loud, and took some glucose tabs from the cupboard. (Chompy, chompy ... always a weird effort to get those things chewed up when I'm that low.)
And then I heard BSparl stirring in the next room. Not crying, but just stretching her little BSparly legs and easing into the morning routine. I went in to stand at the side of her crib while I waited for my blood sugar to rise.
"Hey sweetie girl. Good morning!"
She kicked her legs and grinned at me.
"Hi! Hang on just a few minutes, okay? I'm having a low blood sugar and I need to wait before I get you up. Just another minute or so. I'm low. Your mom is low."
And I thought of my roommates tossing the "your mom" retorts around with reckless abandon. I stood there giggling like a fool for at least a minute, the smile of irony on my face causing my daughter to bust out with an even bigger smile.
"That's right, baby girl. Your mom is low."
Finally - FINALLY - the "your mom" actually makes sense. (And with that, I've come full circle.)
I love Clara Barton Camp. I love the way it smells, the way it looks, and the way it makes you feel as soon as you step foot on the grounds. Driving in to North Oxford, MA last weekend to speak to the staff, I was hit with a wave of excitement at the idea of visiting my old stomping grounds.
And even though the cabins are new (no more rotten old Pixie Place) and they have bathrooms and showers IN THEM (no more waking up a buddy in the middle of the night to take a trek to the lab - which was across the camp - because you had to pee), and even though I was a camper there over fifteen years ago, NOTHING has really changed. Almost all of the campers and staff have type 1 diabetes, making the few people who didn't have to test their blood sugar first thing in the morning the odd ones out (for once).
When I arrived, the dining hall was literally throbbing with the sounds of campers and staff singing camp songs at the top of their lungs. "Sounds exactly the same as when I was camper here," I said to Abby, who was giving me a quick tour of the new cabins at CBC. Admittedly, I felt a little old when she was walking me through the cabins, because I kept remarking at the fact that the structures had both running water and electricity.
"I feel like one of those old people who constantly tells you about how, when they went to school, they had to walk uphill BOTH WAYS, clutching potatoes in their hands to keep them warm. But seriously, cabins having bathrooms is amazing. My mind is blown."
Once we made it up to the dining hall, I had the absolute honor of meeting with the staff and LITs (Leaders in Training) at CBC that had diabetes. I was invited up to talk about growing up with diabetes what it's like to transition from being a child with diabetes to an "official" grown up with diabetes, and these girls were the best audience I have ever had. And the audience with the highest percentage of diabetes! According to the camp director, there are only about 14 people on the grounds who aren't living with diabetes - that's a LOT of insulin being piped in on a daily basis!
We all hung out in the dining hall and just chatted. It felt like a big slumber party, only I wasn't sporting pajamas (and I planned to sleep at home). They had a lot of questions about managing things like college, dating, and of course, the whole baby thing. I tried to be as honest as I could be, toeing the line between "one of them" and "an adult." Like when they asked me about drinking. "I know I'm supposed to be responsible and tell you that drinking with diabetes can be really dangerous, and can lead to some very serious diabetes-related consequences, which is all true. But I can't lie and say that I didn't drink in college. So here's what my experiences were like ..."
It was an incredible night. These girls are a group for the entire diabetes community to be proud of. Their energy, their endless smiles, their excitement for everything. They took pictures (some goofy) and burst into song at the mere mention of the word "song." (Video of a song about ketones coming at you ... now:)
Clara Barton Camp has this way of making you feel like you're being hugged the entire time you're there. It sounds cheesy, but it's true. CBC is like a second home to so many girls with diabetes, and for some, it's the first place they've ever felt like everything was going to be okay. I asked some of the staff members to tell me what camp means to them. Their responses were varied, but all hitting on the same general theme:
"Camp helps make me who I am."
"It feels good to be able to text someone in the 'off season' [when camp isn't in session] and vent about a high blood sugar."
"When I'm here, I sometimes feel homesick, but when I'm home, I definitely feel campsick."
"Here, diabetes is cool. The people who don't have it are 'wannabetics.'"
"When I am here, I feel like a whole person."
"I thought it would be about teaching the kids, but I'm learning so much myself here."
"This place is literally my second home."
"These are friends that I'll have for the rest of my life."
"Camp is my security."
"I'm glad I'm staff this year because I get to give back to something that gives so much to me."
But my favorite was when one staff member raised her hand and said, "It's the happy bubble. This whole place makes me feel like I'm in a happy bubble."
Clara Barton Camp is definitely one, big happy bubble. And it was such an honor to revisit a place that played a huge role in shaping how I view my diabetes today. Huge thanks to Abby, who coordinated the event, and to each and every member of the CBC staff for their warm and inspiring reception - and for the kick-ass t-shirt. (And props to Savannah for rocking those mismatched galoshes!)
For anyone who has been reading my blog since my engagement three years ago, you know that motherhood has been on my radar for a long time. Longer than marriage. That quest for a decent A1C, that desire for a "normal" pregnancy, and that hope for a happy and healthy baby.
Part of the reason I wanted to write about my pregnancy here on SUM is because there wasn't a lot of information out there about pre-existing diabetes and pregnancy. There was a LOT of information on gestational diabetes (obviously), and type 2 diabetes got some good press, but type 1 was sort of swept under the rug. Thankfully, there were a few diabetes bloggers who had chronicled their journeys, and I wanted to add my voice to that hopeful chorus.
But also thankfully, Cheryl Alkon had taken the topic to her publisher, and she penned the first book on managing pre-existing diabetes and pregnancy. And I'm very honored to have been both featured in her book (as a women preparing for pregnancy) and to have her contributing here on SUM:
Doom and gloom. That was the message I got several years ago when I first thought about trying to have a baby while also dealing with my type 1 diabetes. Whether at the doctor's office, going online, or reading the very few books about the subject, trying to get and be pregnant while managing blood sugars, taking insulin, closely counting carbs (and avoiding a lot of low-carb proteins that were good for blood sugars, but bad for babies-to-be) all sounded like a nearly impossible task. One fraught with higher risks of birth defects, overweight babies, worsened diabetes complications, and more.
But I also saw type 1 friends who had healthy babies and sensed what could be possible. This spurred me to research, craft a book proposal, and eventually devote myself to publishing an insider's guide to pregnancy with type 1 or type 2 diabetes. I'm thrilled to say that, five years later, "Balancing Pregnancy With Pre-Existing Diabetes: Healthy Mom, Healthy Baby" was published by Demos Health this spring, and has been enthusiastically welcomed by others who, like me, craved the inside story about how to have a healthy pregnancy and baby while managing diabetes.
I had the pleasure of receiving an advance copy of Cheryl's book just before my baby was born, and even though I was in my third trimester and just weeks away from delivering my daughter, it was so reassuring to read about all the things that could go right. A diabetic pregnancy is a high-risk one, and the challenges can lead to some tough emotional roller coasters and some scary medical experiences (see also: stuck in the hospital for a month) - but these pregnancies can also lead to a healthy, happy baby. (See also: BSparl) Touching on everything from pre-conception to managing the months of the pregnancy to post-delivery recovery and how to wrangle in diabetes control once again, this book was exactly what I needed to read while pregnant with my daughter. I only wish it had gone to press before I had conceived!
If you are a woman with diabetes and you're thinking about becoming pregnant, this book is a good resource for you. If you are the partner of a WWD (woman with diabetes) and you want the full story on how pregnancy and diabetes can mix, this book is a good resource for you, too. And if you are the parent of a woman with diabetes and you want to know that your child can have the same chances of a healthy pregnancy as any other woman, this book is a good resource for you as well.
Cheryl will actually be speaking in Boston in the coming weeks (the first event being THIS WEDNESDAY - sign up!), so if you'd like to hear more from Cheryl in person (and meet my endocrinologist, who consulted on the book with Cheryl), you can attend a discussion this Wednesday. For more details on upcoming events, check out Cheryl's post on her blog.
Thank you, Cheryl, for giving new moms and moms-to-be with diabetes a sense of peace. And congratulations on your BIG ANNOUNCEMENT on your blog today!
For the last year of my life, it's been a monthly visit to the endocrinologist, and then once I was pregnant, the dam broke loose and I basically had a cot set up at the Beth Israel/Joslin pregnancy clinic. Oh yeah, and then I spent a month at the hospital while waiting for BSparl.
I have doctor burnout, big time.
So I'm done with doctor's appointments for at least a few weeks. Mentally, at least. (Because there is another one scheduled for August - WTF?) But last week, I had my last appointment, for a while. I was up at BIDMC for my "six week follow up" appointment (which took place seven weeks after the birth), and I met first with my endocrinologist.
"How are you feeling?"
"Tired. That's normal for a new mom, right?"
"Exhausted is more normal," she said, as she opened up my file on the computer. We ran through my vitals, going over the medications I'm taking, the ones I'm not bothering with anymore, and how my blood sugars have been reacting to new mommyhood.
"I've had some really good days, but the bad days are like epically bad. Like 300's and 400's kind of bad," I said, looking at the floor.
"We want to prevent those highs, and the lows that either cause them or follow them, but you aren't the first postpartum patient I've seen who is hitting these kinds of numbers. It's normal. You'll even out," she said.
My basal rates seemed to be okay, but we did some tweaking to my afternoon/evening insulin:carb ratios (going from 1:12 to 1:15, which is math beyond my capacity). Overall, I've had some nasty numbers, but my endocrinologist reassured me that my A1C wouldn't be too awful, because I wasn't letting any of those numbers ride. (And when she called me on Monday to let me know what my lab work results were, my A1C was sitting comfortably at 7.0%. Some people might call that too high, but I'm calling it a wicked victory for me.)
After I met with my endo, I was off for my exam with the OB/GYN. Not to be terribly TMI, but I can't stand the pelvic exams. They are unholy and cruel and a very strange way to spend an afternoon. (Not only that, but I can't figure out why I'm not allowed to greet the doctor while I'm dressed. No, they send her in only after I'm clad in the awkward paper johnny, with my regular clothes balled up on the chair near the examining table. And it was the first time I had met with that specific OB. "Nice to meet you, too! This is my floppy body.")
Thankfully, I appear to be healing well, both inside and out. My c-section incision doesn't hurt anymore, and even though my lower abdominal muscles are currently useless and squishy, I am recovering like a "normal person." (Read: Not a diabetic who has seen 400's three times in the last eight weeks. Nasty.) There is still a little bit of light bleeding (not from the scar, silly), but my doctors told me the bleeding can last as long as nine weeks. (Yay.) The scar is shorter, and a light pink color as it attempts to heal. I can't see the staple holes anymore, and when I spy the scar in the mirror, I don't want to jump out the window due to grossed-out'ed-ness. That's progress!
So I'm cleared for "normal life," which includes being able to pick up the carseat while the baby is in it, which means I am no longer tied to my house. THANK GOD, because I swear I was hearing the cats talk about me - in ENGLISH - which means my mind was starting to leak out. Onward! To normal life!
(Normal life - ha! That's redefined with each messy diaper and baby smile.)
You know you're a diabetic mommy when ...
For D-Blog Week, Karen challenged the diabetes blogging community with a week's worth of blog prompts. Today is "A Day on the Life," and I've decided to focus on my new life with BSparl. (Because if I tried to pretend that motherhood isn't affecting my diabetes, I'd be lying my face off.)
DING!!! Game on.
5 am: Alarms? We don't need no stinkin' alarms. Because now we have little baby girl who wakes us up at all hours of the night.
When BSparl starts to fuss from her bassinet, either Chris or I leans up to check on her to make sure she's okay. Since Chris usually does the 1 am feeding with a bottle, I try and do the 5 am feeding. Since I'm breastfeeding, what I need to do first is check my blood sugar. Anything less than 120 mg/dl and I'm snacking while she's eating. I start this feeding at 98 mg/dl.
5:15 am: BSparl is done with one side. I switch her to the other side to finish eating, and I brush the foil wrapper that the fruit snacks came in to the floor.
5:45 am: BSparl is fed, burped, changed, and tucked back in. I test my blood sugar again - now I'm 74 mg/dl and the Dexcom is showing a bit of a drop. I wander out to the kitchen for peanut butter and a piece of toast. (Not froast.)
7 am: Up again, only this time because the Dexcom is blaring at me. 49 mg/dl. WTF? Breastfeeding has very unpredictable effects on my blood sugars. Some mornings, it doesn't make me low at all. And then other mornings, it makes me plummet.
7:30 am: BSparl and Chris are asleep in the bedroom, so I settle in on the couch with my laptop and a cup of tea. My goal? Answer some emails, write a blog post, finish some stuff that always seems to be due and I'm chasing the deadlines of, and use the breast pump to stash some milk for BSparl. My insulin pump tubing sometimes gets tangled up in the breast pump tubing. Which makes me think I'm wearing too many freaking pumps.
9 am: Husband and daughter emerge, both sporting the same furrowed brow of the morning. BSparl needs to be fed again, so I test my blood sugar to see where I'm at. 145 mg/dl - thank goodness. Enough with the lows. Bring on the BSparl!
11 am: All of a sudden, it's almost noon, and I haven't eaten anything since 7 am. I also haven't answered a single email. Or finished the article I needed to finish. My mornings are usually spent testing my blood sugar, feeding BSparl, changing her diapers (which have baby Sesame Street characters on them, which makes me laugh. Because what do you call "Baby Big Bird?" Little Bird?), and doing laundry. I test my blood sugar - 118 mg/dl - and thank God that it's not pinging all over the damn place today. Because some days it does.
High Noon: Still haven't eaten. I force myself to stop and devour a Greek yogurt. Blood sugars are holding steady. But my pump site is aching a little - when was the last time I changed out the site?
Noon-thirty: BSparl and I investigate the site. Well, she hangs out in her bouncy chair on the bathroom floor while I take a look at the infusion set. Looks fine - edges are peeling a bit - but it's only been four days. Even though the reservoir isn't anywhere near empty, I opt to change the site because it's achy. And because if I don't do it now, while I'm thinking about it, it will be another full day before I remember. With all of my focus on BSparl and adjusting to life as her mommy, sometimes diabetes takes a wicked back seat.
1 pm: New infusion set is in, baby girl is getting a bottle of breast milk because my own breasts need a break sometimes, and I still haven't answered one single email. Is this why people take maternity leave? I need some coffee.
2:15 pm: Thirsty as all hell. Test again - oh, that's nice. 233 mg/dl. Frigging pump site change ... did I forget to take a little 0.3u bolus before pulling the site? That seems to be the only way for me to avoid post-site change highs. But of course, I had forgotten to do that. And now I'm basking in the warm warming glow of a high blood sugar. FanTAStic. Still haven't eaten lunch, and now lunch is on a further delay due to the high. I bolus down the high.
2:45 pm: Dexcom shows that I'm dropping. Meter confirms the same - 177 mg/dl. Thing is, with the baby now out of me, I'm trying to figure out what my body's insulin needs are. And that's tricky, because with breast feeding, I am never able to do an accurate basal test. I have an appointment with Joslin in two weeks (for my 6 week follow up after surgery/birth), so I'm trying to log blood sugars to give my endo something to go on.
2:46 pm: CRAP! I haven't logged any blood sugars in three days! With BSparl in my arms, I open up my laptop and try to find the spreadsheet. I locate it, and then try to scroll through my meter memory and type the blood sugars into the spreadsheet using one hand. BSparl decides this isn't a good time for her, and she makes a sound not unlike a can of shaving cream being deployed. (She is a delicate, fragile, pooping flower, this child of mine.) Diaper change time!
3:30 pm: Lunch. Finally. Blood sugar is 109 mg/dl. Lunch is a turkey and cheese sandwich, even though I'd much rather go low-carb these days to help lose the pregnancy weight. But without carbs, I'm low all the time after feeding BSparl, so carbs it is.
4 pm: Time to head out to the grocery store and then to the post office. BSparl hangs at the house with her dad while he works, and I test once more before getting into my car. 167 mg/dl. How is the post-prandial that high? I counted those stupid carbs. My insuiln:carb ratio, I thought, was settled back into 1:12. I need to test that ratio again, but no time today. Must run errands.
4:04 pm: As much as I love my daughter, I felt guilty blasting the Beastie Boys while she was inside of me. Without her in the car, I can crank up the volume of the music again. So i do. As I head to the grocery store. Damn, my life is a thrill a minute.
5 pm: Walking out of the store, I realize that my Blackberry has been pinging for three hours and I haven't looked at it yet. Checking the emails, I see that 75 emails have come in since 7 am. And I STILL haven't answered a single one. Whoops.
6:30 pm: It's time for BSparl's dinner. And then we read a book together - I like Dr. Seuss, but sometimes we read other books because I can only make my mouth navigate words like "Th'need" so many times before I start to either giggle or accidentally spit on my daughter while reading.
7:45 pm: Chris heads down to the gym and I prepare to go when he gets back. (No, I'm not really "exercising." Can't for another two weeks, due to the c-section. But I can go for walks on the treadmill, so that's what I do.) I test my blood sugar (139 mg/dl) and get all my crap together for the gym: Dexcom receiver, meter, cell phone, reaction treaters, and that ever-elusive pair of workout pants that actually FIT.
9 pm: Back from the gym, blood sugars are steady for once, and BSparl is napping. FINALLY, I answer some emails and finish up that article. Oh crap - dinner! I find something in the kitchen that doesn't require much assembly.
11 pm: I realize that, since 5 pm, I've either fed BSparl or pumped six times. How is that even possible? Sure does account for the unpredictable blood sugars, though. My body is in a constant state of "feed," making trends nothing short of chaotic. And I have to be honest - I'm not sure I have the mental bandwidth to wrangle in diabetes and motherhood with any kind of precision these days. Working off of very little sleep, and trying to understand the new swell of hormone changes in my body, is frustrating as hell. Diabetes fine-tuning isn't my top priority these days. I just want to coast as safely as I can at the moment. (Note to people who may want to lecture me about my own health: Back off for a few weeks before you run cryptic commentary.)
Midnight: What am I thinking, still awake?? BSparl will be up in two hours for her 2 am snack. I'd better restock the bedside table with low blood sugar snacks and call it a day.
Midnight-thirty: Whoops, forgot to test. 94 mg/dl. Dexcom confirms it's a steady number. Off to bed!
Game Over ... until 5 am. :)
I didn't appreciate everything my parents did for me as I grew up with diabetes, but hindsight being 20/20, I definitely have an appreciation now for their hard work and dedication to not only my health, but keeping the family's routine as "normal" as possible. And now that I have a child of my own, that appreciation is deeper than I thought possible.
This post ran here last summer, and I still mean every word. (Including the bit about the alligators in the carpet. I know my brother and sister and I weren't the only ones who avoided them!)
* * *
Saturday nights when we were very small were the best.
We made blanket forts and used every damn cushion in the couch. Laying pillows on the floor, we'd jump from down-filled island to island, pretending that the carpet was infested with alligators and only by balancing on the pillows would we be safe.
The babysitter always promised to make healthy dinner, but usually we ate popcorn, chicken fingers, and drank diet soda by the bottle, filling the glasses to the very brim and frantically slurping the carbonated foam away before it could spill over.
My favorite babysitters were the ones who played with us, not just sat there and talked with their boyfriends on the phone. Carolyn was my favorite one of all and I named my Cabbage Patch doll after her that year. She was pretty and smart and the characters she pretended to be were so clever. She was the perfect example, to me at seven years old, of what a 'hero' really was.
My parents had a standing Saturday night "date night," and they would go out to dinner either alone or with some friends, then maybe to a movie. Usually they left when it was still light out, while we were still outside playing in the yard or just coming in to have a snack. My brother and sister and I played and fought and made messes and told stories and generally destroyed the house, like little kids do.
Only now, when my memory is jogged, do I remember the headlights pulling back in the driveway, between when dinner ended and the movie began.
Dad would wait in the car while Mom ran in quickly to test me and give me my bedtime insulin injection. Then she'd say goodnight to all of us and run back out to the car to continue "date night."
Only now do I remember those moments and wish I'd named "Carolyn" after my mother, instead.
Little on the down side today, thanks to having just marked one week "in" and with still two to go. What the hell is there to write about, from the mind-numbing confines of my hospital bed?
At the moment, BSparl and I are hooked up to the fetal monitoring system, and I can hear her heartbeat pumping along like a rhythmic Clydesdale and can see the movements of her little 5lb, 5oz body being tracked on the graph. It looks almost seismic, like a BSparl earthquake.
They haven't checked the protein levels in my urine in a day or two, but things appear to be holding steady. Blood pressure is climbing ever-so-slightly, but monitored constantly, and there's room for titration in my Labetalol medication (read: they can give me more of that crap). Still rockin' the heparin injections twice a day (hate) and still not sleeping through the night thanks to the monitoring. (Which I understand the necessity of, but it's not making for "relaxing bed rest." Bed rest is a misnomer. This is more like jail where the wardens grin and mean well.)
One of the hurdles I'm having a little trouble with is the diabetes management aspect of things. The Joslin team comes by once a day to review blood sugars and make suggestions, and they are the experts in all-things diabetes. However, I am the expert in all things specific to MY diabetes, so I've been working hard to achieve a tolerable blend there.
For example, one of the (very nice, very knowledgeable, mind you) endocrinologists had some commentary about a post-prandial blood sugar of 137 mg/dl that I had two days ago. In my mind, 137 mg/dl an hour after eating is downright badass, and I'm very happy with it, especially considering that the pre-meal number was 84 mg/dl. Good control, in my eyes.
"Well, this is a little high. We'd like to get this post down."
I don't mean to be rude. I try to be a good patient, a "patient" patient, and to find that careful blend I had mentioned, the one of my non-medical knowledge and their medical knowledge of diabetes. But it was 8 in the morning. And it was the third time I had been woken up by a doctor who wanted to review my goods. And I didn't agree that 137 mg/dl post-prandial was too high.
"Really? Too high? I don't see it that way. I think that's a number to aim for, especially seeing as how I leveled out to 98 mg/dl at the two hour mark. That's a respectable peak, don't you think? Otherwise, I'd be treating a low at the two hour mark."
"Yes, but it should be lower than that."
And I sort of lost my cool.
"Okay, well how about we all call the FDA and get them to tighten up their requirements for 'what's accurate' to something a little more precise than 20%, and then we can start griping about a 137. Because for all we know, that 137 mg/dl could actually have been a 110 mg/dl, and then I'm right in the acceptable range, right?"
(I am Kerri's terrible, bedrest-fueled, pregnant rage.)
They agreed that 137 was okay. And that revisiting my post-prandials after another day of review would be a good idea. And then the fleet of them shuffled out the door. I felt bad about blowing off steam, but really - I'm in no way a "perfect diabetic," but these days, I'm running really tight and carefully with my numbers. Let's remember that the reason I'm having post-prandial peaks is because - oh yeah - I have diabetes?
It's challenging, that feeling of having people take my diabetes management control away from me. Not that I have all the answers or have it all figured out, but I've been living with this a long time and my own instincts and experience should be as strongly considered as the vast medical knowledge of my new, trusted caregivers here. I'm no diabetes expert, but I'm pretty well-versed when it comes to "Kerri." ;)
Eventually, I'll find a way to balance my issues with control while "in captivity," but until then, I may need to vent here a bit. Because I'm pretty sure they're not reading me.
No WAY could I ever claim to "counsel" parents of kids with diabetes. I'm not an expert, I'm not a doctor of any kind, and I don't have the first clue as to what I'm doing 90% of the time.
So. That being said, I will admit that I've emailed with lots of parents of kids with diabetes, and I've gotten so much out of that glimpse into what it's like to be the parent of a CWD. Not counseling, but listening. And learning. Talking with these different parents has given me a whole new level of respect for what my mother and father did for me, growing up, and how I view my diabetes as a result of their care.
Over the weekend, I received a few questions from a parent that I couldn't quite wrap my head around. They were big questions, the kinds that require coffee and one of those old school composition notebooks (and a phone call to my mom) to sort out in my head. Here's my take on this mom's questions about growing up with diabetes:
How well did your parents do in managing your diabetes until you were able and independent?
I can't say my parents did anything short of remarkable work when it came to my diabetes. And that goes for every parents of a CWD that I've met in the last few years. I was diagnosed just before second grade, and my family didn't know anything about type 1 diabetes, let alone that it could ever effect their daughter. They brought me to the hospital and stayed there with me for 12 days, learning how to inject insulin into oranges using syringes that they would eventually plunge into my own skin.
My mother, in particular, took her role as "my pancreas" very seriously, and worked tirelessly to control my difficult blood sugars. She tested me every morning when she first woke up, the sound of the ziiiiip on the black meter case stirring me just enough to poke my hand out from underneath the covers so that she could lance my fingertip. She carried measuring cups in her purse and had a food scale in our kitchen. My pancreas wasn't working hard enough, but my mother was.
This isn't to say that we were "perfect" in managing diabetes, or our emotions, or that we had one of those "unicorns and rainbows" types of relationships. My parents and I battled endlessly about all kinds of stuff, from cleaning my bombsite of a room to my propensity to drive too fast to fighting over the boys I wanted to date to the diabetes I didn't want to control all the time. Fights were part of the routine, but it wasn't because of diabetes. It wasn't despite diabetes. Diabetes was just part of the stuff we fought about.
(And on the whole "able and independent" part, I'm still not fully either of those things. I'm able to take care of myself, but I still lean on my parents, and my husband, and my friends for support. And while I'm fiercely independent, I still need, and want, their help.)
Did you resent them?
No. I never resented my parents for any of this diabetes stuff. Not even when I wanted to convince myself that it was hard because they made it hard. Diabetes is hard because it's diabetes. Sure, my mom and I had blow outs about when she would say "We have to test our blood sugar," instead of "You have to test," but I grew to understand how much she was truly involved, even though I wasn't aware enough at the time.
I've resented diabetes, though, which I know is hard for my parents to hear (and to read on this blog). I do not like it, I didn't invite it, and I'd sell it to the lowest bidder without thinking twice. I resent it for making me write To Do lists that a child has no right even worrying about, and I resent it now for making me feel for a kick from BSparl every time I have a blood sugar spike during the course of my pregnancy. But my parents - my whole family and friends support team, honestly - have tempered that resentment for me by supporting me. They don't coddle me, or tell me that "Things will be fine" or "Sure, you can go ahead and not care about diabetes." They understand that this disease is serious. And unfair. And only sort of manageable. But also that it doesn't have to own me. It never has. And it never, ever will.
What is one thing you could tell me to do that will make make this easier on [daughter's name]?
Blame the diabetes, not yourself. Or your child. Let her know that it's you and her against this monster, and you'll always fight beside her, not against her. You're in this together, and she'll never be alone.
But Reader, you'll never be alone, either. You've got all of us. For the long haul. :)
I wanted to give my answers to this mom of a little girl with newly diagnosed type 1 diabetes, but I also wanted to offer these questions up to you guys. To get more than just my perspective, because so many of us have grown up with type 1 diabetes and might answer these questions in completely different, completely honest ways. If you have insight to offer, please do!
I love BSparl. I love her little feet and her pouty lips and that feeling I get when she rolls around inside of me. I love knowing that my daughter is just a few weeks away from becoming a part of our Sparling family, and I know that every moment of this pregnancy is completely worth every iota of effort and worry.
That being said ...
I'm starting to lose my mind a little bit.
I've blogged about the details of the doctor's appointments, and the ultrasound scans, and the way that diabetes has impacted my pregnancy, and vice versa. But by the end of my posts, I feel better having purged the feelings and worry. And I want to reassure women who have type 1 diabetes that a pregnancy is possible, and enjoyable, and like they all say - so, so worth it.
But, like I said, I'm starting to crack a bit. On Tuesday, I'll be at 30 weeks, seven and a half months pregnant with just under nine weeks left to go. And these last few weeks have been ... well, not exactly rainbows and unicorns.
Diabetics have healthy babies all the time. I know this. I've read this, others have proven this, and I hope to write those words myself in a few weeks. But honestly, the mental part of pregnancy is more than I was prepared to deal with. The guilt of every blood sugar and every miscalculation makes my heart ache, and I have found myself praying more in the last seven months than I ever have the thirty years before.
I want to paint that "rainbows and unicorns" picture for you guys. I want to make pregnancy seem like it's the most beautiful thing on the planet and even a person with type 1 diabetes can see the nine (ten?!) months through safely. But as my delivery date draws closer, I'm not sure. And I'm scared. And I feel stupid because I have zero control over my emotions these days, leaving plenty of tears in my wake. (I've become a mega-wuss.)
Ugh, downer of a post. I really can't wait to have the baby, but I know that part of why I want her out is because I believe she'll be safer once she's in the world and outside of me. I know that Chris and I can take care of her, as parents, and keep her as safe as any other couple who loves their child. It's the whole "now" process that has me in knots, wondering if I'm taking good care of her now. I want the absolute best for my daughter, and I feel so guilty because I know that my body creates a challenge in some ways.
Just a few more weeks. Every test, every infusion set change, every moment of blood work, every doctor's appointment, every time I pay the co-pay or the parking garage fee, every refilled prescription, every new CGM sensor, every curbed craving ... everything. Everything is worth it if I can get to the end of this and have her out, safely.
And then she and I will get matching mommy and daughter tattoos - hers a rainbow, and mine a unicorn.
(Note to people who may think I've completely lost my mind: Kidding about the tattoos. But I might buy her a t-shirt.)
I opened this gift that arrived in the mail, and almost burst into tears because I hope, hope, hope this is the case for my daughter.
I was thinking about how much planning and effort has gone into this pregnancy, from a diabetes perspective - never mind the regular gearing up that parents-in-training go through. Chris and I have worked very hard, as a team, to manage my diabetes in efforts to get pregnant, and now that BSparl is in there baking cookies (or whatever it is she does all day), diabetes focus has turned up even higher in our household.
I'm blowing through test strips like a champ, wearing the Dexcom to help me keep track of the constantly-changing numbers, using an insulin pump, trying hard to eat healthy (even though I'm currently weighing the pros and cons of a red velvet cheesecake - recipe link courtesy of my friend Elizabeth Arnold), and making feeble attempts to get a workout in here and there. Managing diabetes has become, seriously, a full-time job as my pregnancy rockets into the third trimester.
But I wonder what she'll think when she arrives. And how much things will change. Will she understand when I need to eat before she does, sometimes? Will she feel upset if I need a few minutes to get myself together before I'm able to play with her? Will she think I'm cramping her diaper bag style if I shove my meter in there, alongside her wipes and her binky? Will she wonder what's wrong with my priorities when I refuse to share my juice box with her on our future playground dates?
Will she understand that even though that t-shirt will only fit her for a few weeks and she may not even remember it, but will she know that her diabetic mommy loves her, and has loved her since the moment she knew she carried her?
(And will she forgive her for all the third-person dialog? Maybe not.)
I'm heading to Joslin again today, for the first of my four seven-months-pregnant appointments. Chris and I will see our baby girl through the magic of ultrasounds, and then I'll meet with my endocrinologist to discuss how my body is soaking up insulin like a sponge. Just a few more months until she's here, in our house, in our arms.
Baby girl, I hope you know how loved you are.
(This is part of a gift from my friend Lindsay, who I've never actually met in person, but I feel like I know, though emails and Facebook and blogging. Thank you again, Lindsay, for such a thoughtful gift! BSparl says thanks, too, only I can't really hear here because she's muffled by my enormous uterus. And potentially the sound of the oven *ding* as her cookies bake. Who knows?)
Thanks to the happy combination of Factor V Leiden and being pregnant, I'm rocking a higher chance than average for a blood clot while traveling. Back in October, when I was just a few months along, a lot of my travel was on the Acela, cruising back and forth between Boston and Philly, in addition to some flights. So I needed to take these clotting risks into account.
"You're telling me I should pick up some compression stockings, then?" I asked my obstetrician, after we had discussed my upcoming travel plans.
"Yes ma'am. And wear them. Not just for traveling, but as often as you can."
"Will do. So I'll be potbellied and wearing compression stockings. Hot!"
My feeble attempts at joking aside, these stockings are important. Even though I'm working hard to get to the gym several times a week, I'm more definitively working hard on making money, so there's a bit too much time spent at the computer these days. Heeding the advice of my doctors, I'm careful to keep my legs elevated as much as possible, and I'm sure to pop up and walk around every hour or so, in addition to staying hydrated. (Note: Staying hydrated makes getting up every hour easier, especially when BSparl is gnawing on my bladder.)
And I'm also sporting these socks, purchased for $4.99 at my local CVS. (Another note: CVS takes too much of my money on a regular basis, from their clever selection of lip glosses - love me some Bonnie Bell - to their strategic arrangement of Hallmark greeting cards to their convenient pharmacy that's open 24 hours. I have an intense love/hate relationship with CVS, as evidenced by their constant contact with my debit card.) The socks aren't uncomfortable, they appear to be working well (no varicose veins yet), and they are black, so thankfully they go with my go-to flats of choice these days. I'm safe, BSparl is safe, and CVS is safe because they will continue to get my money.
So what's sexier than compression stockings?
Because without these blasted old lady leg warmers, I'd be risking a blood clot and varicose veins, thank you very much.
Last Friday, Chris and I were back up at the hospital for another round of doctor's appointments to spy on Ms. BSparl. (This might be another long post, because I'm trying to include everything we're doing for this pregnancy, just in case someone else is looking for this info. So thanks for bearing with me!)
Fetal Echocardiogram No. 2: We started with a follow-up echocardiogram appointment at Children's Hospital in Boston, because last time we tried to see the structures of our little girl's heart, she was hiding out too low in her little uterine apartment to be properly found. This time, a full month later, she's over a pound and a half, and the size of an eggplant. So hiding is a little harder.
The babies of type 1 diabetics aren't prone to every kind of complication, but are instead screened for everything under the sun, just to make sure. The ultrasound technicians were looking for problems with BSparl's heart - ranging from a floppy valve to flow problems between the atria and ventricles, checking out the umbilical cord blood flow, too.
"She not much of a cooperator, is she?" the technician asked, pressing the ultrasound wand firmly against the left side of my uterus.
"I guess not. Bit of a shy one."
(I love this kid already!! /sidenote)
"Well she can run, but she can't hide. We're going to get these pictures today, whether she likes it or not."
The technician visually isolated BSparl's beating heart, looking at every chamber and pulse to make sure she was in one piece. But as the technician worked to get the ultrasound images she needed, she was pressing pretty damn hard against me ... and against BSparl.
"Almost done. Just one more image to capture. You doing okay, Kerri?"
"No problem. But I think our friend here is ... ooof! Um, she's not very happy with you."
And when I looked down, I could see the baby kicking and fussing on my right side as the technician pressed the wand against my left. Big kicks, clearly visible to Chris, who was sitting in a chair on my left. BSparl was pissed - she didn't enjoy being bothered while she was trying to sleep during the day, apparently.
'Fiesty one, eh?"
I felt a little proud.
"Yes, she is."
(I guess if you poke at my kid, she fights back. I like that.)
The fetal echocardiogram came back without any red flags, so thankfully her little heart seems to be okay in there.
"Looks like she's about one pound, 12 oz. She's right on track, so nothing to worry about with her size at this point."
I was relieved. "I'm glad you're saying that, because I've had some really tough blood sugars these past 2 1/2 weeks. I was afraid she was beefing up in there."
"No, she's in the 61st percentile, and we aren't going to worry about anything until she's in the 75th. We're going to watch you to make sure she doesn't get too, too big in there, but at this point, she's doing just fine. And so are you."
She printed some ultrasound photos for us (which will go into the baby scrapbook I've started but definitely need to catch up on) and then I met with my endocrinologist about my blood sugars.
Endocrinologist: I am very, very thankful that I have a comfortable relationship with my endocrinologist, because the emotional toll of diabetes has really affected my ability enjoy being pregnant. I've had some highs that wouldn't go away, and plenty of unexplained blood sugars that have made me feel so frustrated over the last few weeks. I'm pretty sure my A1C will be up again this month (hopefully still under 6.5%) but I needed help fixing some of it. And I also needed to be told that what's happening to me is normal.
"I'm high. Like, crazy high, sometimes first thing in the morning. And other times, I can't make my post-prandials come down under 160 mg/dl for at least two hours, no matter what I do. Is this normal? Is it normal for me to be experiencing such wild insulin increases at this point? And is it normal for me to be sort of losing my mind at this part in the pregnancy, too?"
She assured me that this is the point in pregnancy when the placenta does, in fact, produce anti-insulin hormones, causing my numbers to elevates and my need for more insulin.
"Anti-insulin hormones? That's cruel. Cruel irony."
She smiled as she worked to adjust my basal rates (now up to almost 20 full units of Humalog per day, in addition to bumping my insulin to carb ratio down to 1:8).
"You're doing fine. And you've been adjusting your own basals and going after these highs, so that's the right thing to do. We just don't want you chasing. I want to help prevent them in the first place."
I could have hugged her.
"Me, too. I want to make sure she's safe in there. I don't want to hurt her in any way, and the recent highs have me freaking out a lot."
"Don't freak out. Just keep doing what you're doing. Follow those numbers, stay as controlled as you can, and fax me any blood sugars that have you concerned. I can review the changes you're making, or I can make changes for you from here. Either way, we'll get her out just fine."
Building this baby is tough work, and these days, I feel like a full-time diabetic. This baby, and by default, diabetes management, is my top priority and I am focused on keeping her as safe as I can. But as my body changes and my insulin needs become less and less predictable, it's getting tougher to stay in good control. And in solid spirits.
We're almost at the end of the second trimester. Third trimester starts on February 8th, and after that, it's a fast track towards her arrival. This is happening really fast. We actually started registering for baby stuff this past weekend - holy crap. Emotionally, I'm overwhelmed and excited and scared and trying to figure out how to just slow things down for even a day.
(More on that tomorrow, once I wrap my head around the whole concept. For now, I need to go make some pancakes.)
We're just over 23 1/2 weeks with Ms. BSparl, and she's an active little biscuit in there. I know I mentioned it in my vlog earlier this week, but this baby is scooting around all over the place inside of me. Last night, for the first time, Chris and I could actually SEE her kicking from the outside. Feeling her kick is one thing, but seeing it? Completely amazing. When she shuttles and rolls from one side of my uterus to the other, I can see her moving. My belly swells more on one side, and then I can feel and see the 'bulge' move over to the other side. (I'm trying to get a video of her doing this, but usually when it happens, I'm too taken by surprised to grab the Flip!)
On the diabetes front, my insulin resistance is climbing. Daily. Like a cat in a tree, howling from the top branch and refusing to come down. (I need the fire department - stat!) My basals, once at a conservative 12.4u today per day, are at an even 20u per day and I'm sure they'll need to be upped again sometime next week. I feel like I'm chasing my tail right now with these blood sugars, but so long as I can continue to effectively stalk them, I'm confident that I'm not boiling BSparl. This morning, after three days of waking up at 140, 155, and 203 (gah), respectively, my fasting number was 79 mg/dl and the Dexcom reflected a steady overnight, too. I'll take that, and hope it happens again tomorrow.
But if it doesn't? CRANK it up again!
A big hurdle I'm encountering is the exercise bit. Honestly, I haven't had a good workout since before we went to Spain (and returned with Ms. BSparl). In the first trimester, I was usually too exhausted to get to the gym (went three times a week instead of the five I was getting in before), and then we moved out of our apartment in Connecticut, so that whole transition sucked out my desire to work out almost entirely.
Now, well into the second trimester, I'm trying to get to the gym but it's just so boring. My exercise options feel so limited, and I'm not used to the whole "get on the treadmill, walk steadily for 35 minutes, END" routine. No ab workouts, or I could smoosh BSparl. No jumping rope, or all these new sticky-outtie parts of my body might leap off of me and my pelvic floor could be weaked. (Kidding on the body parts leaping off but true on the pelvic floor concerns. I also can't imagine jumping rope being almost 6 months pregnant, nevermind the fact that the kid won't like it.) And no strenuous weight lifting, thanks to compromised diabetic eyes. Those little five pound weights I have are borderline questionable, considering my retinopathy progression. Booooooo.
So the treadmill it is, for long and awkward ambling. (For now.) And even though it's a whole lot of boring (I've watched that "build a six foot gingerbread house in 8 hours" challenge on the food network like seven times now), it is getting harder and harder to keep moving. With BSparl expanding every week, my organs are getting a little smushed in there. An expanding uterus puts pressure on my bladder, my diaphragm, and every other organ I have in there, leaving me short of breath a lot of the time and generally feeling like I'm going to tip over a little bit. I guess these walking workouts are still exercise, even though they aren't even close to what I was doing before BSparl's creation.
Every week is different, but I'm definitely not complaining. Pretty damn grateful, actually. I'm so happy to look in the mirror and see that my waistline has all but disappeared and has been replaced by this bump o' BSparl. She's in there, she's doing well, and in just about four months, she'll be here.
Daddy and I are at the halfway point in our journey to meeting you, and I'll admit - I'm a little surprised at how quickly this is happening. I feel like I was just in Spain, hoping you were there with us, and then just at Joslin, wondering if they were going to tell us you were indeed hidden inside of me.
Baby, we know you are a little girl, and that every week, different parts of you progress in their development. Daddy and I read through those books we bought and marvel at what's actually happening inside, when my outside just looks bulgy. "She can hear us now!" "She'll start kicking any day." "Will we catch her sucking her thumb in the next ultrasound?" "Does she realize I don't know the lyrics to ANY songs, not even Christmas ones?"
And I've felt pretty healthy, Baby. I am about 13 lbs heavier and wearing maternity clothes now (you'll see them when you're born - the crazy pants with the elastic waist bands that everyone was jealous of at Thanksgiving?), but a lot of the "pregnancy woes" aren't part of our lives yet. Like heartburn. And stretch marks (yet). Just some back pain and I feel pretty tired a lot of the time. Heating pads and naps work wonders these days.
But Baby, I get very nervous about things that other people don't know about. The stuff that isn't mentioned on the "What to Expect" websites. We visit the doctor every two weeks, and I'm being followed very closely by my medical team, but sometimes my mind gets panicked about how capable my body is of taking the best care of you. I can't lie - I know that diabetic women have healthy babies all the time, but Baby, when my blood sugars ring in at 200 mg/dl after a meal, no matter how carefully I've counted carbs and bolused insulin, I'm terrified that I'm hurting you. Or this morning, when I woke up at 135 mg/dl at 7 am, I felt a pit in my stomach because I know that it's best for me to be under 100 mg/dl first thing. I wonder, when the infusion set really stung yesterday morning upon inserting it, do you feel that pain? Is it normal to worry about every little thing when it comes to your well-being?
Of course it is, moms and dads who have done this before will tell me. It's completely normal for me to want the very best for you and to hope and pray for your good health and safety. And it's also completely normal for me to worry about every little thing. But what I worry most about are the things I am scared to talk about. The things like blood sugars and hypertension and diabetes-related complications for you and I alike, that other people in my life think I have figured out but I just don't know how to do it right every day. And the idea of doing it "wrong" makes my breath catch in my throat. My numbers seem "good enough" and my A1C is lower than it's ever been, but those 200's that are creeping back in at at times terrify me. So does the 31 mg/dl in the middle of the night. And so does every single thing that threatens to affect you in any way. Will I keep you safe enough?
Diabetes is the shifting sand I'm trying to build my life on, and I can handle my being affected, but I don't want it to touch you. Not even for a moment.
I love you endlessly, Baby. I'm so grateful to even be this far, and I appreciate every moment I have with you, and will have with you in the future. Don't worry, Baby. I'm not spending every minute of our pregnancy in a panic. It's just sometimes I feel so scared that I'm not able to provide to you everything that you deserve. I'm very protective of you already, and I want to be a good mom to you. When I feel you kicking around inside of me, I know you are exactly what I've always wanted. You are a new life that your father and I created together, and I hope that I can give to you even an ounce of the joy you've already given to me in the last five months.
I can't wait to meet you, and hold you, and know that you're okay.
Tomorrow is World Diabetes Day. While my best friend's baby shower is this weekend and I'll be busy preparing for and helping with that event, I know there are lots of events taking place to celebrate the big, blue circle (including the Big Blue Test ... more on that later).
But today is just another day in diabetes management, and it happens to be another endocrinologist appointment for me and the ol' BSparl. BSparl is getting bigger, as evidenced here:
I am now sporting my first baby bump, and it's becoming more and more pronounced every day. (Pronounced baaabeee buuuhmp.) Clothes don't fit, maternity jeans are necessary, and when I zip up my sweatshirt to head down to the gym, the zipper strains a bit over my belly.
But is it all baby? Or could it be some weight from treating all these lows?
One of the things I'm talking to my endocrinologist about today is low blood sugar. Specifically, the crazy-ass low blood sugars I've been experiencing over the last four months. The other night, I woke up to the BEEEEEEP! of the Dexcom and a pool of sweat in my clavicle. Blood sugar was 33 mg/dl, and I wasn't even entertained by the Larry Bird reference.
Instead, aside from the sweat, I was completely symptom free. And that scares the hell out of me, because there have been several lows in the last few weeks that clocked in under 50 mg/dl without a single symptom. Last week, it was a 29 mg/dl that just sprang up on me, and even yesterday I had a 41 mg/dl with my only symptom as thirst.
THIRST? That is my low symptom now? Come on, diabetes. That doesn't even make any sense!!
In preparation for my Joslin appointment today, I have two weeks worth of blood sugars all logged and ready to roll, and as I was printing out the logbooks, I noticed that there isn't a single trend. These lows are cropping up at 3 am, 10 am, 4 in the afternoon, while I shower, while I'm at the grocery store, during conference calls ... you name it. No reason for these pesky lows (and also no reason why I shouldn't just buy stock in glucose tabs, seeing as how I've wrecked through a bottle in the last week alone). Plenty of other type 1 diabetic women who have been pregnant have told me about the epic low blood sugars they've experienced, but I had no idea what they meant until the 20's and 30's started pestering me at all hours of the day.
I have high hopes that my endo can help me peel back some of these lows without sacrificing the excellent post-prandials that I've been working my butt off to achieve. I'm willing to let my A1C creep up a bit in order to bring my machine average back up into the triple digits. I just need some help in making these lows stop.
(I also have high hopes that I can stop sleeping with a bottle of honey next to my bed, because when I slap my hand against that instead of the alarm clock, it's all sticky.)
Last week, I toddled my pregnant self up to the Joslin Clinic for my endocrinologist appointment and an ultrasound with my OB/Gyn. And as excited as I was about the ultrasound and the opportunity for Chris and I to see our baby kicking around in there (more on that later), I was just as excited about the H1N1 vaccine.
I can't believe I'm saying that, either. Yes, this is the same Kerri who wrote about feeling "eh" about the flu shot a few weeks ago. But a few things have come to light in the last couple weeks that have changed my outlook on things.
Like the fact that the Joslin Clinic has been riding me about getting this shot because of my high-risk situation, being both type 1 and pregnant.
Or the fact that every healthcare professional I spoke with at last week's ePatient conference kept asking me, "You are getting the H1N1, right?" and the look of concern when I said, "I haven't received mine, yet."
Or the very scary fact that pregnant women, regardless of any chronic illness, are singled out as one of the highest risk groups out there.
I'm not one to leap without looking. But I'm also not one to put my baby at risk if I can help it, so when Joslin said there was an H1N1 vaccine available to me, I jumped at the chance to get it. Seems like this vaccine, for some completely ridiculous reason, is not being made readily available to people who need or want it, so if there was one available to me, I was taking it.
It was unnerving, knowing they were injecting me with a virus. A dead one, of course, but still, with all the information circulating out there about the pros and cons of the H1N1 vircus, it's hard to know what's true and what's just speculation. Or, unfortunately, what's purely fabrication. In any event, when I heard about a little girl in my home state who, at the age of 12 had being diagnosed with H1N1 and then died from it just a few days later, it was enough to scare me into rapid and determined action.
But even at the Joslin Clinic, I had to jump through a few hoops in order to be viewed as "eligible."
"No, I'm sorry. That vaccine is only for patients who are 24 weeks pregnant and up."
"Really?" I said, my hands against the counter. "I was told that being 14 weeks and also having type 1 diabetes made me a shoe-in for this vaccine. It's like my prize for being the in double risk pool. So there isn't one for me?"
She checked her chart again. "Type 1? 14 weeks? Okay, you can have a seat over there and we'll call you in for your injection in just a few minutes."
It felt so odd, fighting for something I wasn't even sure I wanted in the first place. But I kept thinking about the pregnant women I'd heard about on the news who had died from H1N1. And then I thought about all the public transit I'd taken in the last few weeks, and my upcoming travel plans for this week. Did I want to take the chance?
If it was just me, I may have. I may have waited or put off the shot or taken my chances. But I'm responsible for this baby. And when we heard the heartbeat, loud and strong, and saw him (or her) kicking around in there, I knew that I needed to do whatever it took to take the best care possible of my child.
So they shot me up with the H1N1 vaccine. Oddly enough, I felt grateful.
And that night, I promptly felt ill and slept for about 15 hours straight, waking only to test, snack, and drink water. I wasn't experiencing any full-fledged sickness, but the weather was above me enough that I hid out all weekend long, missing any Halloween festivities and instead camping out at home with hot tea, chicken soup, and Kleenex.
Today? Feeling much better and on my way to speak at a seminar in New Jersey. But I keep hearing about others who are seeking out the H1N1 and still haven't been able to gain access to a vaccination. What does it take to get protection when you need it? How are there H1N1 clinics in some states but not in others? Are you someone who is trying to get this vaccine but can't? Or are you avoiding this shot, and why?
I've already jumped, so my opinion is moot on this one. I'm pregnant, my doctors told me this was best, and I (for once) listened. But this issue is getting bigger and bigger, and with diabetes month just getting started here, I want to know how the diabetes community at large feels about this H1N1 vaccine.
I've been thinking about you for a long time.
My doctors told me it would be a challenge to have you. They said that diabetes would be a tricky hurdle as I planned for you. They said you might not happen. There were so many reasons to be scared and so many reasons to doubt, but I never gave up on you, Baby. I have always wanted you and have worked so tirelessly to make my body safe for you.
And at the end of August, at the Joslin Pregnancy Clinic appointment several weeks ago, I thought you could possibly be there. I thought there was a chance, because your dad and I were ready to try for you, so we took that leap.
"It's so early, so the test might not show a positive result, but we should do one anyway. But remember, it might not be positive because you wouldn't be very far along." The CDE gave me a warm smile while the nurse went to test the sample.
Your dad went into the waiting room to sit. We didn't know how long it would take to get the results back. And while I was waiting, the CDE and I were talking in the hallway about how great it would be if you really were there.
Then the nurse opened the door of the lab and came out with the test in her hand.
"Oh, she's definitely pregnant. Look!"
And I saw two lines. And the CDE began to cry. And then the nurse began to tear up. I cried, too, because I was so scared and humbled and in love with you already.
"Chris, Chris!" Even though we were in a waiting room with people who were there for their own appointments, the world sort of stopped for a minute so we could have our moment.
Chris heard the commotion from the waiting room, and came over, his eyes shining. And Baby, I wish I told him about you with even a scrap of grace. That I'd whispered, "We're pregnant!" or "We're having a baby!" or even, "Oh my God!"
"It's on!" is what I said.
We hugged. And we kissed. And the family in the waiting room burst into a quiet applause.
There have been many weeks that have passed, and they haven't been the smoothest. There have been some very scary moments, and I'm still scared to be writing this all down. There have been so many doctor's appointments since that day. Thankfully, everything seems to be just fine and on track, and my diabetes is under the best control I've ever achieved. (Last A1C, taken Friday, was 6.2%!) You are growing fast, and we've slowly told our friends and family about you. Everyone is very excited, and I'm working really hard to make sure that we both remain safe. You're coming next spring and we couldn't be happier. Being your mom is the most important job I will ever have, and I'm ready.
When I looked in the mirror this morning, I saw the rounded baby bump and felt such a surge of happiness. I don't know if I'll be the best mom, or the most "together" one, or even if I'll be one who has any clue what she's doing. But I'm so excited for you to arrive, even though I am scared and careful and preparing as best I can.
You are so wanted.
Baby, I can't wait to meet you. I've always wanted to be your mommy. And in just under six months, I'll be able to hold you in my arms instead of just in my heart.
I love you so much. And now everyone knows.
I stood there with my best friend as she rubbed her pregnant belly. The whole waiting room was filled with these lovely women and their round beachball bellies of varying sizes.
And I felt oddly self-conscious with my lack of roundness.
Last Friday was my first official appointment at the Joslin pregnancy clinic. It's located at Beth Israel in Boston and is a beautiful hospital, different from the Joslin Clinic across the street that feels like home at this point. I'm not pregnant, and we aren't trying to become pregnant YET, but this appointment puts things into full swing to bring me to a safe level of pre-pregnancy health.
Sigh. This all sounds redundant, even to me. I've talked the Big Talk before. "Oooh, look at me! I'm going to really wrangle in my numbers and have an A1C you can bounce a quarter off!" And I'm all gung-ho for a week or two, armed with my little log book and my good intentions, but within a few days, Other Things start to creep in. Like work. And stress. And getting to the gym. And social stuff, like hanging out with my friends and going to RI on weekends. Eventually my good intentions end up in the spin cycle, and my log book starts to gather dust. My workload piles up. And my stress levels skyrocket.
I'm so frustrated because I want to have a career. And I want to have a baby. (I'd also love some tight control of my diabetes, too.) These things would be excellent, but it feels like tightly managing type 1 diabetes is a full time job unto itself. Slacking off is easy, and frustrating, and not healthy for me or any baby I'd like to have.
But I also realize this is one of my biggest hurdles when it comes to pregancy planning - the whole "sticking with the pre-program." This becomes more and more obvious to me when I go back and re-read old blog posts where I'm so excited to get back into better control, only to be derailed by those Other Things. So during the course of my appointments on Friday with the endocrinologist, the registered dietician, and the certified diabetes educator, I admitted my faults freely.
"I need help being held accountable."
They didn't quite hear me at first. "We can do some tweaking, and in a month or two, we can revisit your A1C and see if it's lower and then we can give you the green light for pregnancy."
I knew I needed more than that. I had to be completely honest.
"Guys, I really need to be held accountable. I know this sounds crazy and I seem very compliant, but I have trouble following through. I'm great out of the gate, but I lose steam after a few weeks and I'm at the point where it isn't good enough anymore. I'm out of excuses. And I'd really like to join the ranks of those pretty pregnant ladies out there. Please help me?"
And they listened. We spent the rest of the day working out a plan for me. One that will actually make a difference. One that will get me there.
I'll be in Boston every three weeks until I'm pregnant. This is a huge commitment but I need to make diabetes a priority without fail. I want this. I want to succeed at this more than anything else. I'll have my blood sugars logged for those three weeks and we (my husband and my diabetes team and I) will all review them together. Chris is in charge of my meals, in that he'll be helping me plan my day, food-wise, and he'll be counting carbs and measuring things for me. I'll be eating relatively similar items every day so I can manage the trends and control them. I'll continue to test all the live long day and wear the pump and the CGM, but I'll actually use these devices to their fullest potential, instead of just going through the motions.
With these appointments spaced just a few weeks from one another, I hope I can stay tuned in to intense diabetes management for three week stints. Being sent out for three or four months is too much for me. Obviously, because I burn out well before my follow-up appointments. I just plain can't pay rapt attention for that long. But three weeks? Can I do that?
I have to do that.
I will do that.
The catalyst that brought me to BlogHer was a conversation back in October 2008 with Lisa Stone. Lisa and I met at the BlogHer Outreach event in October and I talked with her about the patient blogging community and how we're truly changing our health outcomes through blogging about our illnesses and connecting with others.
I will admit to being very nervous before this panel, because it's one thing to write online behind the protection of a computer screen - another thing completely to speak candidly before an audience about our personal health issues. But sitting there, in front of people who actively sought out the PatientBlogger panel, and elbow-to-elbow with some terrific patient bloggers, I felt like it was almost instantly comfortable once the discussion started.
Jenni opened up by talking about the highs and lows of patient blogging, including the notion of being defined by our diseases. Easy for me to chime in there - "That's actually the tagline of my blog, and I think it's important to remember that diabetes is definitely a part of me, but it's only one part of me. I'm also married, but that doesn't mean I'm only someone's wife. There are many, many parts to the whole. Diabetes is just a part of me."
We talked about what it was like to connect with people who "get it." About connecting both on and offline with people who share our experiences and sharing best practices while making it clear that we aren't offering medical advice.
"Big, fat disclaimer, guys." I kept repeating myself, when asked how we deal with people thinking we're offering medical advice. "It's not medical advice. We aren't perfect. Just because we’re patient-bloggers and we’re writing about our illnesses, it doesn’t mean we’re awesome at managing them. I’m writing about diabetes every single day, I’ve been diabetic for 23 years, and I don’t have perfect blood sugar results.”
Loowa talked about her experiences with chronic pain, and how she battled the healthcare system to get the care she rightly deserved. As a panel, we chimed in with our similar stories of what being a patient in this healthcare system is really like, from Casey fighting for insurance coverage for injections that would preserve the positive outcome of a previous surgery to Jenni talking about how her condition (fibromyalgia) isn't even recognized as legitimate by the medical field at large.
It was like being in someone's living room, having coffee, only we were miked and people in the audience raised their hands to ask questions. But it was intimate. Comfortable. We, as a group, were protected within that room. People spoke their minds, and let themselves cry, without fear.
So much that Ree of the Hotfessional boldly took the microphone, introduced herself, at at the gentle urging of Mr. Lady (okay, Mr. Lady offered to make out with her but work with me on this, I'm in the moment), pulled off her wig and exposed her beautiful bald scalp to the room. "I look like I have cancer, but I don't." Ree lives with alopecia and despite her assertion that she doesn't experience "symptoms" of her illness, she is a professional woman in a professional environment, dealing with being bald as a woman.
"No one has seen me without this, except my husband and my children." She was crying, along with almost everyone else in the room who was watching her in awe. "The way you react mentally to your life with your illness is your own business, but putting it out there, you will get the support you want. It will do wonderous things for you."
Sometimes it's hard for us to blog about our diseases. It can be really emotionally intense to log on to your blogging platform and post, for the whole internet to scrutinize, the real struggles we experience as we live with chronic illness. Sometimes readers lash out and attack us for our opinions or our care regimen. Sometimes we are forced to have thicker skin than we'd like.
But sometimes blogging about our conditions is what gets us through the day. Sometimes it's the email from someone saying, "Hey, me too," or "You helped me feel stronger today." Sometimes it's the comments from people who really understand what it's like to live with these diseases. And sometimes it's simply knowing we aren't alone. And that we never have been alone.
And now, with the support and love of our communities, we never will be alone again.
Patient blogging ... that's some powerful stuff. This was an inspiring experience, I'm honored to have shared this panel with such inspiring women, and I'm humbled to be part of this incredible community.
I can't pretend to have all the information on Judge Sotomayor and her Supreme Court appointment. But I do know that my first day back here at work has been one email after the other about Sonia Sotomayor and the effects of her type 1 diabetes on her potential new gig.
Total media deluge. Here are some of the highlights:
Holy media overload. The Internet is exploding, it seems.
I admittedly do not know much about Judge Sotomayor or her background other than what I've read over the last week or two about her potential appointment. But I do know quite a bit about type 1 diabetes after 22 years with it. And in my opinion, her diabetes shouldn't play a role in this consideration process - at all.
A "defective pancreas" does not mean a defective mind.
"Hi, I'm Kerri Sparling and I've been low since Karen and I got on the train in Connecticut."
This is how I decide to introduce myself to the support group in NYC? Great. Already off to a decidedly awkward start. (But I'm nothing if not awkward.)
But these women were patient with my ramblings. And they truly are something else. Katie Savin, organizer of the NYC support group for young women with type 1 diabetes, has found some of the most compassionate, open, and well-spoken women in the NYC area to share her space with. I was invited at their guest speaker, but I was humbled to be more of a guest listener.
They share openly. Someone asked a question about CGMs and three people leapt up to show their sensors. A woman shared her emotional journey with complications and guilt and the rest of the group immediately offered words of support and validation. Another woman is getting married nine days from today and went on her pump barely a month ago, and the group offered tips on hiding her pump in her dress. Another (with the best hair I've EVER seen) is marrying in November but proactively preparing her body for pregnancy, and I felt her frustrations intimately.
We talked about what it's like to be newly diagnosed, or a diabetes veteran. Some on pumps, some on shots, some on CGMs, some on the fence - it was a melting pot of personalities and passions, all lives laced with type 1 diabetes.
It. Was. So cool.
(And I finally had a chance to meet LeeAnn from The Butter Compartment and author Elizabeth Joy. I love putting smiles and inflection to the writers I read, and I was very happy to say "Oh my gosh, hi!" in person. They are two lovely and extremely talented writers, that's for damn sure.)
The hour and a half meeting ended too soon, and we found ourselves tumbled out onto the sidewalk and chatting out there. Sidewalk chats lead to sidewalk photo shoots.
And photo shoots lead to "Are you going to put that on the blog?"
And then we blinked and about ten of us were sitting at the Gramercy Diner and still talking our faces off. I am constantly amazed by the steady and comfortable flow of conversation between diabetics, and how quickly the conversations stray away from diabetes stuff. We are not short on things to say, it seems. (Just short on islet cells. :: rimshot ::)
Much like the Fairfield County dinners, the group is comprised of people who have nothing in common but diabetes. But at the same time, that gives them everything in common that they need to sit and talk for hours on a Tuesday evening and become friends.
Thanks for having me, Katie - I was very honored to be your guest. I hope to see you guys again soon!!
Thanks to Jessica Hickok for offering to guest post today (I'm still in Tucson with the fabulous Dr. Val). Jessica wrote a post about something that is definitely on the forefront of my diabetes mind, namely diabetes and motherhood. Jessica offers up her thoughts on her diabetes pregnancy and advice on managing all the emotions.
* * *
Quoting a line from the movie “Steel Magnolias” for the title of this post seems only fitting when guest blogging about what it is like to have babies and type 1 diabetes.
You see, I am type 1 and currently 31 years old. When I was 22, my husband and I had been married 2 years and decided it was time to fulfill our dreams and have a baby. And the biggest piece of advice I can give to everyone who has seen the movie “Steel Magnolias” … it is important to remember that life does not always imitate art.
We did the planning and really worked hard on keeping my blood sugars regulated. We spoke to my doctor and with an HbA1c of 6.8% we were given the green light to have a baby. <insert cheesy, romantic interlude here>.
However, when I found out that I was pregnant with my first child, I was both elated and scared at the same time. I knew it was coming, but I immediately thought to myself “what if something goes wrong?”
When other PWDs ask me about my child-birth experiences, I feel compelled to share my story and the following advice of what you can expect or should consider:
1. Do not let diabetes steal your thunder.
Be happy for yourself, you’re having a baby! Just because you have a chronic condition, does not mean that you cannot enjoy the pregnancy and anticipation of motherhood. Nor can you let your dreams be ruled by fear or guilt of your disease. So you have to work a little harder at staying in a healthy glucose range, big deal, you’re going to do that anyway.
2. Be comfortable with your doctor.
Being diabetic automatically puts you in a high-risk category. However that doesn’t mean that you should lose sight of your basic rights as a patient. Find a doctor that is comfortable with your disease and one that is willing to work with your diabetes doctor or endocrinologist.
3. Expect that your baby might be big.
High sugars can spill over into the placenta feeding the baby and causing a large birth weight. Both of my boys were born approximately 3 weeks early and the first one weighed 9lbs 12oz and my second was 10lbs 14oz. No, I am not looking for a prize, but I do point that out just to prove that all of my complaining during pregnancy was justified.
4. You may have to have a c-section.
C-setions aren’t bad, they just sound scary. Yes, it will take you time to recover, but just think with your tightly controlled blood sugars that you had during pregnancy, your recovery time should go relatively quick. I had both of my babies delivered c-section and I wouldn’t trade it for the world…I did tell you that they were big babies, right?!
5. Expect that your sugar readings will roller coaster after having the baby.
While my hormones were bouncing around back into place the few weeks after having the baby, it caused my sugar readings bounce along with it.
6. Diabetics have healthy babies all the time.
Today, my first child is 8 years old and my second is 5 years old. They are bright, healthy and so-far diabetes free. (knock on wood). And the good news is that my story didn’t turn out at all like the one in Steel Magnolias.
I was lucky to have my insulin pump while I was pregnant. And because there have been so many advances in diabetes technology (enter CGM!), I know that it has only become better and easier for PWDs to have children.
The moment I held that precious newborn, my fears were all washed away. For those amazing first moments of holding my new baby, I was not diabetic … I was a mother.
Disclosure from Jessica: Please keep in mind that this post is written purely based on my opinion and my personal experiences with pregnancy and childbirth. I am not by any means a medical doctor. Nor do I share my story as medical advice. Please talk to your doctor about your plans to have children.
Editor's note: Thank you for posting today, Jessica! There are guest blogger spots I'm looking to fill, so if you'd like to guest blog on SUM, email me!
I'm driving my little Honda up to Boston today for my endocrinologist appointment. I spent part of last night printing my blood sugar logs from the end of March and the bulk of April (I have been keeping up with The Log Book, as promised - many blue stars on my chart). I noticed that while I've been feeling like my control has been relatively good, I've had some zinger highs and a few trenches in the last 90 days.
For whatever reason, I'm not dreading this appointment. Oddly enough, I'm looking forward to spending the day in Boston, even if I will be at a hospital for much of the day. Going to Joslin forces my brain to realign, and it always makes me feel hopeful. I've been a patient there for over twenty two years, and it feels oddly like home.
They'll take an A1C, and I hope it's finally ringing in at NHB Range. But my doctor has expressed more interest in having my numbers stable, instead of "good" as a result of averaged highs and lows. She'd rather see me holding strong at a 140 mg/d as opposed to pinging from 300 mg/dl to 40 mg/dl.
I'm not sure how I feel about an A1C result being the definitive measure of my diabetes control. (Apparently Lindsey at Blogabetes has had the same thoughts.) Is this a state of mind I've decided upon as a result of a result over 7%? People talk about the estimated average glucose (here is a dizzying article including lots of math and here is an online calculator that keeps the math hidden where it belongs), but is it a true indicator of how I'm running? And what is this fructosamine test I keep reading about? What is the best way to tell if my body is healthy?
I'll have these tests today and I'll run through my list of questions (including, but not limited to, what can I do about this relentless tendonitis, is my blood pressure well-controlled enough for pregnancy, and do I really need to cut out ALL the coffee from my diet as I move forward here?) I feel like I'm in excellent hands at Joslin, and I'm ready for whatever today has to throw at me.
(In the meantime, this had me mesmerized for quite some time yesterday. I wanted to dive into the middle of that couch and snuggle every last one of those furry messes.)
It's no secret that my mom is a huge part of my success as an adult with diabetes. Her support, even when I rebelled against it with all my might, has made me confident in dealing with whatever diabetes has to throw at me.
My mom has guest posted here a few times in the past (here are her archived entries), and she's offered to share her perspective again. Reading her posts makes me think about how much the parents of kids with diabetes work so hard to maintain our "normal."
From My Mom:Hello ... Kerri’s mom here! From time to time, Kerri will ask me to do a guest post. What prompted me to post at this time is her recent blog regarding her old childhood journals. (Yes, she could write like a champ way back when. It’s always been a gift she has possessed.)
The fact that Kerri went to Clara Barton Camp from the time she was diagnosed until she was too old was a blessing in that I was able to hand over the responsibility of her medical care to a very capable and trusted staff at the camp. I don’t think I ever thought of it as “ok, now we can be normal for two weeks.” Maybe her siblings thought there would now be more sugary, tasty treats available during those two weeks that were not hidden in frozen bean boxes.
Parents are responsible for the well being of their children from birth to when they are able to live on their own. (Not that it stops us from worrying.) Throw diabetes into the mix and it can be overwhelming at times. We love our children and would do anything to keep them safe and protected. It is our “job.” I looked at sending Kerri to camp as a benefit to everyone in our family. She could bond with children who deal with the same issues she did on a daily basis. They can complain about how over protective their parents are and that we don’t understand what it’s like. No, we don’t, but as a parent these children don’t understand the fear that is ever present in our minds. Will we handle their diabetes care well enough to ensure that they don’t have serious lows or highs? Have we done enough to protect their future health from diabetes complications. It’s a scary ride we parents are on. I guess until they have children of their own … they can’t know how we feel just like we can’t know what it’s truly like for them.
Kerri used to get upset with me when I would say things like “we have to do a better job at…” She said it wasn’t a “we” disease, it was she who had diabetes. I beg to differ! When you are trying to protect your child from the consequences of diabetes or any disease it does become “our” disease as well. How can we let anything bad happen to them? You become the Lioness protecting her cub! I thought I was the only one that knew how to take care of her and I didn’t insist that others help out. If I could go back in time, I would certainly rethink that one! Everyone needs a support network. In a way, Clara Barton camp was that for me.
I needed that two week camp time to regroup. To take a mental health vacation. While she was at camp, I would often wonder how she was doing. How were her blood sugars running? Was she having fun? But I can say that I wasn’t worried. She was in good hands. We both felt refreshed when camp was over. Kerri would come home having forged some long lasting friendships. She was more confident and determined. Camp allowed her to share feelings with other kids who understood what it was like to live with diabetes. No worries about acting weird when low…they all had been there and done that!
I lost my job as “Protector of the Kerri” a long time ago. She is very capable of handling her life and health. Will I always worry about her? Yes, like I do with all my children. That’s normal. But she is very fortunate in that she is married to Chris. My mind is at ease ... he is my Clara Barton camp!
Thanks, Mom. For everything.
At the JDRF Walk in Connecticut this year, I met with a woman named Joan Benz. She was tending a table of her homemade wares: specialty pump pouches and concealment cases. Joan is the founder of T&J Design.
Joan is the creator of a fantastic little product called "the leg cuff," and it's the Thigh Thing 2.0, as far as I'm concerned. I absolutely cannot STAND when I'm wearing my pump on some kind of strap around my thigh and it starts to FAIL. Nothing is more embarrassing than walking down the sidewalk towards my office and feeling that thigh strap start to slip, then slide down towards my knee, then tumble out from under my hemline - making me look like my undergarments are falling off me as I walk.
The leg cuff is different because it's a thicker piece of fabric and there's a lining that adds some extra grip to the whole thing. Because it is a wider structure, it isn't as apt to slide down while you walk. And because Joan makes these herself, specific to your measurements, the fit is precise and snug. You can get the leg cuff in black or white, which makes it pretty darn versatile. And you know what a fan I am of keeping the pump concealed and quasi-fashionable!
And while this whole leg cuff thing is a wicked cool product, there is something else that Joan makes that really tugged at my heartstrings. Joan creates these pump concealment pieces, ranging from the leg cuff to a more standard "pump pack." But she also makes pump packs that are doll-sized, helping a little kid with diabetes to feel more accepted and less alone with their disease. Each pack comes with a little cardboard, doll-sized pump. It's just about perfect.
I think having a "diabetic doll" is crucial to that acceptance stage, growing up with diabetes. I remember I had a Cabbage Patch Kid with blond yarn hair that I named "Carolyn," and she was diabetic. Just like me. Carolyn had to test before she ate. She took "injections," and she accompanied me to many pediatric endocrinologist appointments at Joslin. Even now, years later, I remember how Carolyn the Cabbage Patch Kid made me feel like I was normal. Or at least a new kind of normal. So, to me, Joan's idea is fantastic.
If you are looking for a good "thigh thing," check out T&J Design and tell Joan I said hello!
(Also, Joan was recently named the Outreach Coordinator for the Fairfield County JDRF Chapter - my local CT chapter - so hopefully she'll have a bigger outlet for her terrific product! Congrats on your new position, Joan!)
As with everything diabetes-related (or maybe just life-related), there are pros and cons to this whole continuous glucose monitoring thing. For those of you who are still thinking about whether you want to make this CGM leap, here are my pros and cons of CGMing to shed some light on the subject.
The sensor is bulky. The sensor isn't tiny (about the size of an iPod shuffle), but it's held securely down by the adhesive gauze, so once it's in place, I can't feel it. This is a big deal for me, since the Minimed CGM was painful for me. However, it's visible underneath the sleeve of my shirts when I wear it on my arm and it's slightly uncomfortable to sleep on when it's on my back.
Can be "too much information." Having blood sugar updates every five minutes is awesome, until you find yourself checking it every five minutes and obsessing over each result. I needed to be psychologically ready for a CGM, and I need to be able to keep it from ruling my life.
Receiver is enormous. The Dexcom receiver is pretty big - bigger than my Blackberry - and it's cumbersome to wear. I usually keep it on my desk, in my purse, or in my coat pocket when I'm out. At night, I strap it to the headboard of the bed using a headband. Not a big deal, but it's hard to miss. Especially when it ...
Beeeeeeeeeeeps! The beeps are LOUD. Mega loud. Loud enough to wake me up during the night if I'm low (thankfully), but during the quieter parts of the workday, it's loud enough to distract my coworkers. I recognize that the beeping is important, but it's not always convenient.
Adhesive sort of sucks. This is my biggest compliant about Dexcom sensors. The things do NOT want to stay stuck for more than five or six days. I shower twice a day (before work and after the gym) and I wear clothes that rub up against the sensor, no matter where I place it. Even with SkinTac, the edges of the sensor start to peel up at about the five day mark, and it's loose and ready to fall at the 7 - 8 day mark. (And sometimes, the SkinTac and the Dexcom adhesive and a not-so-helpful bandaid create a huge and ugly problem: frigging ouch. See the photo on Flickr for a full rundown.)
I do not like when a $60 sensor starts to peel away. This is highly annoying.
Insurance coverage battles. While others have had their requests approved without batting much of an eye, my insurance coverage for the CGM had to be fought for. I battled my insurance company for over eight months before receiving my approval letter. The insurance hurdles are a definite con, and might make some people reluctant to fight for their right for a CGM. (Cheerleader note: But don't let it stop you! Go for it!)
Doesn't feel "sexy." (Yes, I know this "shouldn't matter," but these are my personal pros and cons, so roll with me, okay?) With the pump infusion set stuck into one part of me and the CGM sensor in another, wearing two devices doesn't exactly feel like I'm ready to model for Victoria's Secret. There have been plenty of times when a moment has been interrupted by the CGM beeping or the sensor getting stuck on my clothes and whatnot.
Low blood sugar safety net. This was a huge part of why I wanted to use a CGM in the first place: hypoglycemia unawareness. I was exhausted and frightened of the lows at 3 am, so having the added safety net of the CGM has been a huge improvement. The CGM does its job and protects me from plummeting blood sugars. When Chris is away on business, he prefers that I wear the CGM to keep an eye on those lows. It makes me feel safe, and I value that "pro" above all others.
Helps me avoid staying high. My body reacts to blood sugars that are over 260 mg/dl or so, but those 160's and 180's often go unnoticed. The Dexcom helps me wrangle in these "minor" highs and tighten up my blood sugar standard deviation overall. Staving off both the lows and the highs will be particularly helpful during my future pregnancy.
Excellent for exercise. I go to the gym at least five days a week, and my workouts range from walking/jogging on the treadmill to cardio circuit training. The CGM has been AWESOME at detecting fluctuations in my numbers while I work out, helping me avoid those crash-and-burn lows at the gym and also the highs that sometimes crop up after a hard workout. (And it was great on our hikes when we went to Acadia - excellent tool!)
Driving safety. I spend a lot of time in the car driving back and forth to RI, and the drive time is anywhere from 2 1/2 hours to 4 hours (depending on traffic - I hate CT highways). Having the Dexcom in the center console next to me while I travel is another big bonus. With hypoglycemia unawareness and blood sugars that seem to be affected as much by my moods as by what I'm eating, having an extra eye on those numbers is crucial to keep be safe behind the wheel.
Integration-free works for me. I trialed both the Minimed CGM and the Dexcom and for me, the Dexcom being a seperate device worked best for me. With the Minimed CGM, I couldn't hear the pump alarming in the night because it was buried underneath the blankets. Having the Dex receiver separate from the pump is convenient for the nighttime alarms and also if I want to avoid having to deal with the CGM for a little bit. I can shove it into my purse, bury it in a desk drawer, or even walk away from it for a little while if I want. I like the freedom from being beeped at sometimes. It sounds counterproductive, but in the longrun, this is a bonus for me.
Trending and tracking. Here's the point of CGMs - to track the trends of my blood sugars. The Dex doesn't replace my meter, but instead works with it. I test on my meter and see a result of 100 mg/dl, but with the Dex, I know I'm "100 going down," "100 going up," or "100 holding steady." This makes it easy to go into long meetings at work without fearing a crash, and also lets me go to bed at a blood sugar of 90 mg/dl with confidence.
Pretty darn accurate. I don't expect this thing to be right all the time. I already have my head programmed to accept that a CGM doesn't replace finger sticks, so when things don't match up all nice-nice, I don't flip out. Overall, though, I've found that the CGM rides pretty close to my meter. Dex works better when I'm running a bit steadier, so it's actually a weird sort of incentive to maintain better control to retain the integrity of the sensor. Don't ask me to mentally make sense of that - I need to take whatever motivation I can and run with it. ;)
But it does feel sexy. And this is the flip side to that "con" coin. The Dexcom is sexy. It's stuck to me to gain better control of my diabetes. Good control helps everything from my weight to my hair to my internal organs to my smile. Being healthy is sexy as hell. And being confident enough to wear this machine, despite its cons and because of its pros, makes me feel stronger all the way around. For me, after weighing all these pros and cons, the CGM is definitely worth it.
Readers Beware!!: These are MY pros and cons. I chronicle my personal experiences with diabetes here on SUM and I'm not a doctor or a CDE or a medical professional of any kind. I have decided to use the Dexcom CGM after trialing both the Minimed and the Dexcom, but I know plenty of people who are using the Minimed CGM without issue. For me, the Dexcom was a more comfortable fit into my life, literally and figuratively. It's all about personal preferences, and these are mine.
If you're thinking about trying out a CGM, I recommend trialing as many kinds as you can before making an informed decision. Your mileage on these devices will vary, so it's important to find out what works best for YOU. Contact your CDE and see if you can schedule a week trial session with different devices.
If you want to share your perspectives, feel free! I love that the online diabetes community has become a real source of information for diabetics everywhere who are looking for real information - we are the true mavens of patient experience!
Big sunglasses? Tucking my pants into a pair of thigh high boots? Ridiculous white plastic 80's earrings?
No, no, and NOPE.
But if there's one fashion trend I'm embracing whole-heartedly, it's the scarf thing. Scarves, pashminas ... whatever you're calling them, I love them. Every time we're in NYC, I spend way too much time perusing the pashmina color selections offered up by the street vendors.
Five bucks for one scarf? Don't mind if I do!
These handy little numbers come in a whole rainbow of colors - I have everything from midnight blue to pink to purple. They add a splash of color to an otherwise drab ensemble, and the fabric itself is soft and flowy. I'm frigging smitten with the things.
And in addition to being fun and fashionable, these scarves are also my new weapon in diabetes device discretion. One scarf, draped casually in any way that falls past my hip, can cover the bulge of the insulin pump or the Dexcom receiver. Since I've been rotating my sites more frequently and making use of the real estate on my lower back, the tubing doesn't always reach far enough to hide the pump in my sock. In these instances, I clip the pump to my pocket or waistline. And the lovely scarves are awesome for keeping my devices incognito.
Even though the cold weather is chapping the hell out of my hands and making me shiver as my car warms up in the morning, I'm thankful that this chilly weather offers up plenty of opportunities to be fashionably healthy. (And they're sort of snuggly, too, these scarves. Almost forgot that part.)
How do you make your insulin pump or other diabetes device part of your ensemble?
Today's post is brought to you by the letters "T," "M," and "I." And also "Y," for "why the heck am I telling you this?"
Because it may not be just me. So I'm inclined to both share and draw on the genius of the blogosphere.
My period came when I was 13 years old - textbook "time to become a woman" sort of thing. And it came for the first time at church. During Sunday school. Fantastic. I knew what was going on (health class + MomTalks = educated Kerri), but the timing was a bit entertaining.
For the first few years, my cycle was more seasonal than monthly. I only had my period once a season, skipping months at a time, but because I wasn't sexually active, it didn't raise any concerns. My doctors and my parents decided I was going to take a few years to acclimate to a monthly cycle, and since I was only 16 at the time, it wasn't a raised concern. I was under the medical microscope at that time anyway, being in my teens, having trouble controlling my blood sugars and/or hormones, and enjoying yeast infections, urinary tract infections, and other high blood sugar added bonuses.
Once I became sexually active at the age of [hey look, something shiny!], I talked with my doctor about starting on a birth control pill. Being the paranoid peanut that I am, I talked extensively with my endocrinologist and my gynecologist before deciding on a pill, and kept in close contact when them for the next few years.
But then there were some hiccups in the system that made me rethink the regular pill regimen. First, I entered my late twenties and realized I had been on hormones for over ten years. Second, I got engaged, which made me think BABIES and made me want to confirm that my reproductive system was in fine working order. And thirdly, there was the diagnosis of the Factor V gene, which made regular birth control pills a risky choice and forcing me to try the minipill.
So, with all of these factors (literally and figuratively) in play, I've decided to come off the pill. Effective last night.
I've come off the pill once before, in college. At that time, I was between serious boyfriends and wasn't sexually active. So, under the advice of my doctor, I stopped taking the pill for eight months. And during the course of those eight months, I did not get my period even once. I decided to go back on the pill to re-regulate my cycle and it was only after taking a medication to induce my period did I get one. Once I was back on the pill, my cycle came predictably and without issue. But this "gap" concerned me, and I want to make sure I'm okay.
With my marriage behind me, my thirtieth birthday ahead of me, and my desire to start a family becoming more of a "now" than a "later," it's time to make sure my body is ready. And not just from a diabetes perspective. From all perspectives.
But - FOR THE RECORD - I am not pregnant. I am not trying to get pregnant. And I'm not ready to get pregnant. When I'm there, I'll definitely share that news proudly! But for now, I'm going to enjoy being a newlywed for a bit longer. :)
So ... who out there was on the pill for years and came off it? I am not sure what to physically expect (Will I cycle right away? Will my body become sore or more sensitive? Will I be an emotional wreck? Will my face fall off?) and I could use some guidance. Or advice. Or maybe some coffee would suffice.