Friday Five: What I’m Reading

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I received notice that my dance team is taking a break for the summer, so I have this insane amount of “free time” in the evenings for a couple months. And I say “free time” because I am too tired to do anything productive. Toddlers are exhausting.

Reading wasn’t always a pastime, especially if I danced six days a week. However, since that has slowed down, I need more productive things to do in lieu of scrolling through Facebook all night.

Here is what I’m currently reading, have read recently, or have in my queue to start.

  1. Life Is Short, Laundry Is Eternal: Confessions of a Stay-at-Home Dad by Scott Benner. Scott is one of our own DOC members, but I’ve never picked up his book until now. His viewpoint on D-parenting is spot on — all while bending gender norms. The couple chapters on Arden’s diagnosis hit me hard, as I would expect them to, and shed some more light into caregiver struggle.
  2. Bright Spots and Landmines by Adam Brown. Another one of our “own.” Adam just published this book and is offering a free/name your price PDF download via DiaTribe. The proceeds go to the DiaTribe Foundation. Or you can pick up the Kindle or Paperback version for next to nothing. I enjoy personal accounts rather than clinical accounts when it comes to diabetes, so I’m looking forward to this one.
  3. Oh Crap! Potty Training: Everything Modern Parents Need to Know to Do It Once and Do It Right by Jamie Glowacki. Not a diabetes book, but definitely a parenting book. Bean is just over two and a half and started showing interest in using a potty a couple months ago. I didn’t follow this method to a tee, but I tried to stay as true to it as possible (like ditching diapers cold turkey) and I return to it when we are struggling. We aren’t there yet by any means, but the intent is there. Potty training sucks, though.

  4. The Handmaid’s Tale by Margaret Atwood. I haven’t started this one and I’m trying to prep myself for it. I never read it in high school (could have been the whole Catholic school thing…) I know it’s dystopian fiction, but I just feel like I’m going to be extremely pissed off and uneasy through the process. Nothing changes by being comfortable, right? And no, I don’t have a Hulu subscription, so I’m not watching the series. Would prefer to read it first.
  5. Strangers in Their Own Land: Anger and Mourning on the American Right by Arlie Russell Hochschild. I’ll be honest – I finished this up about a month and a half ago, but I’m adding it because even I can’t realistically read five books at a time. In a search for more nuance and understanding of people I don’t agree with politically, I picked this up based on the recommendation from the podcast I listen to. This book, while a struggle to not to scream at every person interviewed, attempts to empathize with citizens residing in the deep south. Great for exiting your echo chamber if you swing leftward.

Happy reading! Enjoy your weekend.


Disclosure: There are affiliate links here. Clicking and purchasing the items listed do provide me a small commission. All thoughts are my own, however.

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A Caregiver’s Lament

A fellow mom friend posted a frustrating update to her son’s prognosis today. Her son, who is around Bean’s age, has been battling leukemia for the last several months. She shared some not-great news about his current health and is worried about his future development. She brought up the heavy burden and guilt she felt for making decisions about his treatments that could have lasting repercussions on his health.

While other moms reassured her that her son has no reason to blame her–she is making these decisions now so he CAN have a future–she can’t help but feel like she’s not doing enough and her child will grow up resenting her.

For a moment, I stepped into my mom and dad’s shoes. And pretty much every D-parents’ shoes across the world.

Comparing childhood cancer to childhood diabetes is like apples and oranges so I won’t dive down that rabbit hole. The small common threads I can connect are the sacrifice and guilt of a caregiver.

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I didn’t want to turn the conversation to me in my response. But I wanted to share with my friend, that as someone with a frustrating and relentless illness, I value every sacrifice and every decision my parents made to keep me alive and healthy. My parents gave up a lot to keep me complication-free. Namely sleep, free time, and a carefree lifestyle with a nuclear family.

I may have hated them in the short term for superficial reasons. I was, of course, a child, and incapable of seeing things beyond immediate face value.

For example:

  1. When I was a toddler, I didn’t like needles. Shots hurt. Blood tests hurt. I often hid in my dad’s closet to avoid shots. But, they still found me and mom still gave me my insulin.
  2. I didn’t like to eat. I was extraordinarily picky. But, when Regular and NPH insulin dictated my meal schedule, it was either this or a hospital trip. Docs said just give it to me. Veggies be damned. My diet consisted of macaroni and cheese, hot dogs, and grilled cheese for several years. (Karma is a bitch, by the way – my kid loves 2/3 of these things.)
  3. I didn’t go to my first overnight sleepover until I was well passed Junior High. My mom always picked me up around midnight. This was the bane of my tween social status. (On the flipside, we had a lot of sleepovers at my house.)
  4. We lived very frugally. We didn’t have the nice computers (by 1990’s standards), video game systems, new clothes, whatever. We went on vacations but always flew standby. I didn’t always understand it as we seemed to live comfortably otherwise. But then I started paying my own medical bills. Oh.

If I am truly my mother’s daughter, I can understand that the screaming during shots hurt her as much as they did me. That she felt like I wasn’t getting adequate nutrition because I just needed to eat something. That she hated picking me up at midnight as much as I did, but the cost of me passing out among the company of diabetes-strangers was more worrisome. That she probably wished she could give me the world, but the best doctors were out of network.

It wasn’t until I was on my own that I realized the magnitude of my illness and what my parents did. Or what they had to endure from doctors or the peanut gallery; the sleepless nights wondering when my Lantus crash would occur; worrying if I would go blind or lose my legs because my A1C was elevated. Just the sheer impact of doing everything humanly possible to care for me and it still may not be enough. Then not knowing if it would be.

So my friend, I only offer to share the load and to seek others who share similar loads. Being a caregiver isn’t easy–but I come with encouragement that your work and effort will not be in vain.

Date Nights – Or Why D-Parents are Heros

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BSM Dining Hall – the place of many food stand offs with my parents.

I had a mentor growing up. She was someone who my parents met at a “families with diabetes” camp when I was around three years old. She also has Type 1, was a nursing student, and living life in the 80s as best she could with her new normal. I had a lot of interaction with her throughout my childhood, but she eventually moved away to travel and finish her education. We kept in touch via annual Christmas cards for almost 30 years.

She came to visit me a few weeks ago because she needed to be in the area for something. It was the first time I had seen her, in person, since I was about 7. Obviously a lot has changed since then, but we picked up conversation straight away based on the letters, emails, and cards we have sent.

People like her are important to me because they help fill in the gaps of what it was like to grow up with diabetes in a time where there were no glucose meters, continuous glucose monitors, and online support groups on Facebook. Since I was diagnosed at such a young age, I don’t remember much about the early years. I’ve heard pieces – I was in the hospital a lot, I was on a nasty regiment of Regular and NPH insulin (which doesn’t work for a picky eating toddler), I had a litany of doctors with terrible bedside manner, I didn’t have a glucose meter until 1985. (And was diagnosed in 1982.)

During her visit, she shared some more useful, though, humbling, information about my parents. When she met my parents at camp, they were both at the end of their rope. And I say this with an emphasis on “end.” I’m sure, somewhere in there, my brother was born, but I was definitely the special needs kid with high demands. This probably involved trying to make me eat something after the insulin had been injected and failing, causing hypoglycemia induced hospitalizations. Testing ketones by squeezing urine out of diapers. I’m not sure if they had to ever boil the test tubes of urine for sugar content, but I’m sure that was brought up at a doctor appointment. Nothing they did worked. (Though, I was surviving, so it didn’t all not work.)

The kicker bit of information: either one or both of my parents were with me at all times. I was never in someone else’s care for more than one hour. No vacations, no date nights. My mom was a stay-at-home-mom by default.

Camp gave them some new ideas and perspective. They were introduced to many nurses and staff members to help them realize that I could be normal and have a normal childhood, but I needed some extra help. More importantly, my parents needed a break.

My mentor offered to baby-sit numerous times while I was at camp. My parents always declined. Each year, my mentor was suggest it again, and my parents, again, declined. Finally, when I was five years old and on my 3rd year at this camp, my mentor suggested that I stay with her one evening… and three other nurses on staff who all happened to be in the same general vicinity. My parents thought about it and accepted. Yes. It was only a good idea for my parents to have a date night if I could have 4 nurses or nursing students (two of them with Type 1) look after me.

It wasn’t for a weekend away. Or a vacation in the Bahamas. It was a dinner date about 20 minutes away. Maybe 2 hours max.

I reflect on this now because I have Bean, who is approximately the age that I was when I was diagnosed. She’s inherited the pickiness from both her father and I. (Also, she’s a toddler.) She’s very active and happy. It’s easy for me to just call up a babysitter and say hey are you free for a few hours… it wasn’t that way for my parents. For at least 4 years.

 

 

Building a Capsule Wardrobe for 2016

In with the old and out with the new.

2015 was extremely busy for my family and me. (Hence why this blog was essentially abandoned for a year.) I was tending to Bean’s growth and development, adjusting to the new sleep regiment (or lackthereof), introducing solids, switching daycares, switching CITIES, buying a house, selling a house… oh and dancing in between in my “spare time.”

When I was nursing Bean full time, I bought a whole “nursing” wardrobe, separate from my maternity and regular wardrobe. Clothes that were designed for easy access for emergency roadside feedings and stretched in various directions. When summer rolled around, I stopped using the winter nursing clothes and just started using my existing clothes. These items weren’t meant to be stretched, pulled, and Lord knows what else I did to them. My clothes needed a redux, but I didn’t want to replace the zillions of items I had overstuffing my closet with more of the same. And I didn’t want to use the clothes I had because they all screamed “I have an infant at home… but I’m also a ballroom dancer so here is some glitter.”

That’s when I decided to look into Capsule Wardrobes; or a mini wardrobe made up of really versatile pieces that you totally LOVE to wear. Off to Pinterest I fled, researching a variety of ideas, color palates, and motivation to only have 33(ish) articles of clothing and shoes in my closet at one time over a three month period.

My challenges and potential hang ups:

  1. The premise of a capsule wardrobe is to change it out every season/three months. This assumes that seasonal weather is three months long where I live. It’s more like 5 months of Winter and Summer, then 1 month each of Spring and Fall.
  2. I generally maintain the same lifestyle for a majority of the year. I go to work; I social dance; I go out to eat here and there. It is the small wrenches – like a surprise theme dance or impromptu formal event that I really wouldn’t have something specific in my closet for at that moment.
  3. Honestly, a super versatile  wardrobe is made up of a lot of black and white basics, so I had a hard time finding ones with colors I liked to wear.

Nevertheless, the closet needed to be cleaned out.

This is probably the lengthiest step – getting rid of (almost) everything.

I mostly followed the ground rules I read about:

  1. Take everything out of your closet and chest of drawers (still working on this) and begin to divide up your existing wardrobe.
  2. Separate into piles or bins: a) things you LOVE and would change into that second; b) things that needed to be donated; c) things that you could sell/consign; d) things that needed to be trashed; e) the maybe/Seasonal pile, which will be sorted after some thought.
  3. Loungewear, PJs, workout clothes, clothes you paint in are all exempt. I also added my ballroom costumes (duh), some dance practice clothing, dance shoes, and special occasion dresses for events at the studio to this list of exemptions.
  4. Some blogs include accessories and handbags in their capsule limit. I chose not to, but I will be culling the stock pile I have.

Once this is done, you narrow down your remaining items to 33 articles of clothing and shoes. If you don’t have 33-36 items of clothing by the end of this, you set a budget and go shopping for some basics. (Tip: after Christmas is a KILLER time to shop sales for capsule basics.)

The Purge was enlightening. I often clean out my closet, but very rarely do I actually try items during those mini purges. They were superficial and I only donated items I simply didn’t wear. Since pregnancy definitely changed how clothes and shoes fit me, I had to try on everything I hadn’t worn in several months.

I discovered the following:

  1. I had multiples of tank tops and camisoles in all colors. Seriously. There really wasn’t a reason for me to have 8 black tank tops in my closet, but I did. (Sad fact: only two of them actually fit me properly and could be worn by themselves.)
  2. I have a bad habit of finding a cheap shirt somewhere and buying the same shirt in three different colors without actually trying it on before buying.
  3. The camisoles from #1 made me feel like a sausage. (Thanks pregnancy!)
  4. The sentimental and souvenir t-shirts were the hardest to let go. Especially since the Disney ones were so expensive.
  5. My feet have grown since having a baby. At one point before pregnancy, they shrunk. A lot of shoes I hadn’t worn yet no longer fit me.
  6. I found one tank top hanging in my closet inside out and I don’t remember the last time I wore it. So it had to have been laundered and then hung like that for quite some time.
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EIGHT! Eight black tank tops!

 

Sell box on the left and Seasonal/Maybe pile on the right.  

Trash pile on the left and donate pile on the right (which got bigger after I took this.)

 

So many hangers. Current state of my closet. Still more work to do.

I still have some more work to do over the holiday and then figure out what was going into my Capsule for the next three months. But even if I don’t keep it to 36 pieces, at least all the items that do not fit or aren’t in good condition are out of my closet.

Where I am shopping for my basics and filler items:

Postpartum Diabetes Challenges

There is something to be said about the hoops T1s jump through to maintain a healthy pregnancy.

The countless doctor appointments and tests.

Scrutiny to what you ate 3 days ago that made your blood sugars spike and drop uncharacteristically (while suffering from pregnancy brain)

The assumptions and misinformed medical staffers.

All of those ultrasounds that measure your peanut larger than he’ll actually be born. (Not a unique problem to PWDs.)

And then you have baby and all is right in the world because all of your hard work has paid off and you have this awesome little nugget in your arms who will unconditionally love you. YAY! Time to leave the hospital.

Wait…

Oh, no one told you that you actually are coming home with TWO children? A real-live newborn and a cranky chronic condition which just spent the last 10+ months being micromanaged and now wants to party like a college freshman on spring break? Welcome to the next stage of your pregnancy with diabetes care: the postpartum period.

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In addition to “normal” bits of new parenthood, like sleep deprivation, baby blues, and healing from childbirth, we have a whole set of unique challenges to consider.

Your blood sugars will be shit. 

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Thank those postpartum hormones and the fact that you no longer are sporting a placenta. Sometimes it comes as welcomed relief to those who were burned out by the constant testing and dosing. (Meh – #BGnow 180, #zerofucksgiven #sleepneeded) For others, it means downing a juice box every hour while 70 mg/dl seems to be your weekly average. But suddenly, a rebound of 320 shows up.

Tip: Write down your pre-pregnancy insulin doses and keep them in a safe, but easy to find, location. Once the placenta goes, so does your need to take 150% more insulin than usual. (Usually.) Having these doses handy will at least give you a starting point. And if it’s still too much, you can adjust with your medical pro from there.

Remember that these WTF blood sugars are temporary. I know it’s probably hard to go from super mega control to… not in a matter of 12 hours. But in the grand scheme of life with D, this is a small blip on your A1C’s radar.

Keep a basket of goodies near you at all times.

There are a ton of Pinterest posts about “nursing baskets” to keep handy if you are breastfeeding your baby. (Also applies if baby likes to nap on you after a bottle, etc.) These baskets generally have burp rags, a bottle of water, something to read, the TV remote, your phone, breast pads, lanolin, a blanket for baby, snacks… pretty much anything you would want in arms reach if stuck under a sleeping/nursing baby for several hours.

I would add for us PWDs: a glucose monitor with an extra vial of test strips, a full bottle of glucose tabs or your low treatment of choice, snacks you can eat with one hand and have a ton of protein (because oh, God, you will be hungry all the damn time), your continuous glucose monitor, if applicable.

For snacks, I liked anything with peanut butter, almonds, cheese and crackers, high protein granola bars, and my lactation cookies.

Refill your supplies before baby comes – or set up Auto-refill.

It’s one thing to have a screaming newborn and surviving on no sleep. It’s another to have to make an emergency stop at CVS with said screaming newborn because you don’t have any test strips. Of the three companies I have for refills, all of them have some sort of automatic refill option when your insurance says you can reorder. Medtronic automatically sends me my supplies and then invoices me, for example. Make this one less thing you need to think about.

Double check that all of your scripts are current as well. I went through a long process with Medtronic at year-end because my prescription authorization expired and no one could get a hold of my endocrinologist.

The Baby will still be there if you need to treat a low.

The baby will also probably be crying. And that’s okay. This was probably the hardest thing to do during postpartum – remembering to take care of me, even if Bean was screaming. Because I am no good at parenting and picking up a screaming child if my blood sugars are under 50 mg/dl. I was home alone with Bean quite a bit before returning to work. There were plenty of low alarms and times that I had to set her down for 2 minutes while I found a juice box. It’s fine. You are responding to baby’s needs by being able to actually respond to her needs in about 3-5 minutes. (And not drop her/fall with her.)

Disclaimer: Nope, still not a doctor. Consult one if you have more specific questions.

Musings of a New D-Parent

Just a random assortment of new mom w/D thoughts.

1) Between Bean’s middle of the night wake ups, my cranky CGM, and my leaky boobs, I get approximately 3 solid hours of sleep per night. My Dawn Effect is very confused.

2) My postpartum A1C was much better than expected. I also still spend a fortune on orange juice.

3) I have gotten more “No Delivery” alarms in the past 4 months than I have since I got on the pump in 2006. These alarms usually come when Bean is screaming at me for some reason.

3a) Bean also screams when I have hypoglycemia, a really high blood sugar, or when I have just finished a giant bolus to cover the meal I will eat cold 20 minutes later.

4) I’m really happy coffee has a minimal effect on my blood sugars.

5) Questioning my endocrine system because my hair is falling out in chunks? Nah – that’s just postpartum hair loss. I’m surprised I don’t have a bald spot.

6) I can’t keep up with the latest trends to keep Bean from getting diabetes. Though, we are going to try some Baby Lead Weaning, so I’m kind of excited to watch her gnaw on a rib when she’s older. She’ll probably also get some toast. Or a waffle.

7) My endocrinologist suggested we let Bean “cry it out.” Is that grounds to find a new endocrinologist? (An aside – I’m not opposed to it when she is much, much older, because… toddlers. But she is 5 months old, dude.)

8) Bean’s first word is probably going to be “high” or “juice,” or “meh.” (That last one is totally a word.)

9) I was reminded about TrialNet at my last endo appointment. Apparently I can test Bean for T1 markers, and later have her participate in clinical trials if markers appear – just needs a blood test and a lifetime of worry.

10) I’ve used my CGM or pump as a flashlight to check on my sleeping daughter more times than I can count.

11) I qualified for a free upgrade to the Dexcom Share system since I bought a new receiver in February. Handy, since I seem to have my phone near me than I do my Dexcom receiver.

12) Bean’s room is a black hole for CGM transmissions. I can leave Dex in any room of the house and go anywhere in the house and the signal still works. Except in her room.

13) If Bean is laying on me, or nursing, her diaper will always leak on the pocket housing my insulin pump.

14) When I say that I’m having a crappy pump day to M, I have to be more specific.

15) Thrush is a pain in the ass (or boob?) and just another fun thing to manage as a mom w/D. I assume because I’m a sugary sweet individual, I’m more prone to these infections.

Friday Five: Parenting Edition

Today I’m reflecting on some of the trials and tribulations my parents went through  raising a T1D daughter. There are a number of D-Parent blogs out there that I peak at every once in a while. However, here’s what I remember as a child about having D-Parents in the 80s.

1) I complain a lot about my CGM waking me up every hour, on the hour with alarms. My hubs also grumbles a bit. However, my parents didn’t have the alarms of CGMs… only the alarms of their analog clocks and their best guess at patterns and research of when my NPH would send me crashing down at 2 am every night. I mastered the art of drinking juice while unconscious. It helped me later if I passed out in a grocery store, or in front of the neighbors’ kids, or on the playground. Generally, I remember waking up to the fuzzy image of my mom’s permed 80s hair with a killer headache.

2) I don’t really remember being a very picky eater. But I had my moments. Particularly, during weekends away at Family Camp. Y’know, go hang out in the woods with your family and a slew of other T1 Families. Go on hikes with nurses and heavy backpacks. Learn square dancing. Do crafts by the campfire. Yadda yadda yadda. (For those that know me in real life, YES, I went camping!) Anyway, my nemesis on these trips was the camp cafeteria. Because it wasn’t home cooked at home, nor was it a grilled cheese sandwich. And these meals were prepped by dietitians and not chefs so everything tasted like cardboard. But I needed my Regular insulin. And my parents gave me my same dose before dinner every night… then sat with me for as long as two hours after the dinner buffet opened because “I wasn’t hungry/didn’t want to eat this food/bleh.”

3) Vacations were always exciting. Particularly if we flew anywhere. (Which was often.) The amount of snacks we smuggled on to flights was insane. We still had to abide by the 2 luggage per person rule, but we kind of took that for granted… sometimes… most of the time? I remember tupperware jugs of chex mix, crackers and whatnot. On that note – hypoglycemia and flying didn’t mix well with me. Particularly if the airplane food was bad (see above story). Those kids that you often roll your eyes at for the incessant crying and whining. That was me. But I had good reason. Right?

4) Negotiating with restaurants always seemed to be a favorite past-time of my parents. My mom usually kept Ketone strips in her purse. Not for testing for Ketones on the go. But for testing sodas to make sure the restaurant gave me diet. I remember one time, my mom somehow deduced that this fast food restaurant had the lines for the diet coke and regular coke switched because my Ketone strip was coming out bright ass blue. (And it tasted funny.) So rather than asking for a refund for the soda I couldn’t drink, my parents asked that the lines be switched so the correct soda could be distributed. Mmkay.

5) My parents just made shit happen. Didn’t matter what it cost. Where they had to drive. How many doctors they had to call and fight with. My mom knew I didn’t fit the textbook definition of a T1 and probably would have thrown my sugar free jello at the nurses in the hospital if she were that type of person. Their daughter was special and they were going to put everything on hold financially to make sure I was healthy. They were the first to handle the stares, the rude questions, the inquiries, and the fanny pack full of D-supplies.

We say in the DOC that you are the only person that knows your D intimately. D-parents need to know it well too, especially with a young diagnosis. To this day, I still consult with my mom on the phone when my docs can’t give me straight answers. (My dad usually just listens to me whine… but he’s good at that.)

So this Friday, I honor D-parents. While you may not think your D-kids are remembering what you do… they are.