At 12 months I threw a big old party to celebrate kicking D-bootie.
But something really cool happened between 12 months and 2 years.
Tomorrow is 2 years and I feel like I am me again - a changed me, but me.
The girls and I were listening to the song "For Good" from the Musical "Wicked" and that song reminded me so much of our journey with diabetes:
Like a comet pulled from orbit As it passes a sun Like a stream that meets a boulder Halfway through the wood Who can say if I've been changed for the better? But because I knew you I have been changed for good
Don't get me wrong - there are some changes that I would love to be rid of.
I'd love to go back to a time when I could put my daughter to sleep and not worry about her.
I miss sleep.
I'd love to go back to a time where I didn't see a plate of food as one big carb calculation.
I'd love to not see black dots all over Ella's fingertips from finger sticks or rashes all over her skin from infusion sets.
I'd love to never see my daughter almost pass out from a low ever again.
Domestic Divo is desperately trying to convince me that camping is fun.
He grew up camping and he absolutely loves everything about it.
Me? Not so much.
Sure, it's not that bad once you're there...if you don't mind dirt, sand, mosquitoes, spiders, bugs, covering your body in DEET, being hot, being cold, smelling like a fire pit, constant sweeping, dirty feet, looking ugly, smelling bad and not having space to get away from your kids.
Even if I did enjoy all of the above, I'm still not convinced that the 48 hours it takes to prep for camping and the 48 hours and 10 loads of laundry after camping is worth it.
And let's just get this out of the way now: I'm not even talking about tent camping.
Livie's "Too Cool" Pose
"Camping" = full hook-ups
"Roughing it" = no hook-ups
"Tent Camping" = my personal version of hell
Domestic Divo convinced me I needed to try it because the kids would love it and we would create so many amazing family memories.
So I did. I mean, how bad could it be?
We started out small...a quick day trip to the beach about 30 minutes away from home.
Beautiful Smiley Sunset
And while I spent a lot of time sweeping sand out of the trailer, seeing my kids enjoy themselves was enough for me to consider an over-night trip.
For our first overnight trip, we went camping with our close friends about 15 minutes away from home, again at the beach.
The kids had a blast riding their bikes, playing at the beach & eating S'mores.
The husbands had fun playing with the kids in the ocean.
My girlfriend and I drank wine and I had time to relax & read a book.
And while I swept a lot of sand, I also had a good time.
See? I'm smiling - fun, fun, fun!
Determined to really grow to love camping, I agreed to a 4-night camping trip on the Colorado River about 6 hours away from home at Pirate Cove Resort. A bunch of our friends were going with their families and I absolutely love lake trips, so between being on the boat and being in the company of good friends, I figured it would be a winner.
And it was!!
We had such a good time. The resort was great - we had our own private beach all to ourselves and the kids were getting along and Ella's blood sugars were beautiful, even with being on and off the pump. It was the easiest camping trip I'd been on yet and I was having...fun! I even perfected my low-calorie lake beverage and coined it the "D-Lighted Momma." Don't worry, recipe to follow...
And then the Norovirus showed up and The Great Outbreak of 2013 began.
There were 7 families & 24 total people in our group.
The flu started with tiniest one - a little 18 month old boy and we all fell like dominoes.
Each day a new family was hit.
Stories of projectile vomiting and stomach cramps were told around the campfire each night.
Yet our family remained unscathed.
Convinced that the vodka in the D-Lighted Momma would help kill the virus, I upped my consumption.
The day before the trip was over, I looked at Domestic Divo and knew something was wrong.
In our 13 years of being together, I have never known him to be sick in bed.
He spent 6 hours sleeping in the trailer that day.
But when he emerged, he felt better and I thought for sure we'd been spared!
It was a D-Lighted Miracle!
Until about midnight when my stomach started cramping so hard I thought perhaps I was pregnant and didn't know it. I actually used birth class breathing techniques to get through the pain.
And while I will spare you the details, let's just say that spicy chicken tacos don't taste nearly as good coming up as they do going down.
And here's a fun tid-bit: After having babies, bladder control ain't what it used to be so every time I puked, I also peed myself. Which was just so humiliating that I started crying at the same time, sobbing to sleeping family members, "Oh no, I'm peeing! I'm peeing all over myself..."<<vomit>, <<pee>>, <<cry>>.
The next day we had to pack up to head home. I was a miserable, helpless, stinky wreck. No sleep and having experienced every last one of my digestive juices, I laid in the trailer moaning until Domestic Divo said it was time to go, at which point I tried to get up. I made it to the trailer steps and had to sit down & rest. For some reason, my loving husband thought it was so funny to take photos of me in my misery.
I think I'm saying, "Seriously, babe - just give me a minute" ---------------------------------------------------->
And then I started to get nauseous again, so I made my way over to a tree where I tried to empty the contents of my empty stomach and the photo snapping continued.
12 years of marriage, people. 12 years of marriage.
I'm pretty sure I was cussing at him in my head.
And then I started to feel really weird. And light-headed. And it started getting dark and I started seeing stars. So I sat down and said something to the effect of, "I don't feel right - I think I might pass out."
And the next thing I remember, I'm being carried by my armpits and legs and tossed into the front seat of our truck and I wake up just enough to think, "Huh...I think I might need to use the bathroom" only to realize it was TOO LATE and to be honest, I was too sick and tired to care. I'd already puked, peed and passed out. What's a little poop?
I drank a bottle of Gatorade, changed into some clean clothes and suffered through a long drive home where I immediately showered and went to bed.
In total, 22 out of 24 campers were hit, including Livie who started Poltergeist Vomiting the night we got home and Ella who got hit a few days later after I'd already sent her to school and infected her classmates. (Sorry!)
So have I given up on camping?
We did just return from a quick weekend get-away at Lake Casitas where I was dirty and ugly and there were spiders and it was hot during the day and cold at night and I smelled like a fire pit and I swept constantly. But I maintained full control over my bodily functions, so I call it a win.
The D-Lighted Mommas and S'mores helped.
I am happy to report there are no more camping trips planned in 2013.
You dose your butterfly for 60 carbs of pasta & bread so you extend the bolus by 2 hours, 70% now.
You tell your butterfly & kitty to go to the bathroom before you leave the house to go trick-or-treating.
You have an amazing time, waking around the neighborhood, keeping an eye on blood sugars which are running a little low. You give your butterfly a roll of Smarties, a Blow-Pop, a Twix Bar and a bag of popcorn and bolus for about 15 carbs since her CGM is 85 pointing South East and there's a lot of house-to-house running going on.
You get home about 2 hours later and your darling butterfly informs you that her site ripped off when she went to the bathroom BEFORE you left the house to go trick-or-treating.
A quick glance at the CGM reveals she's in the 120's.
Ella's Medic Alert was getting old and a bit tight thanks to the 10 pound weight gain since diagnosis (we finally hit the 50 lb mark - Yahoo!)
I was just thinking to myself that I needed to order Ella a new Medic Alert when I got an email from the owner of a personalized and medical jewelry company called StickyJ offering to send some samples for me to review.
The girls and I jumped on the computer and started looking at the website and had such a hard time picking out what we wanted because there were so many styles to choose from! Beaded, silicone, leather, sports, even macramé bracelets, tons of medic alert necklaces and numerous styles of ID tags (even shoe ID tags!) offered in different shapes and colors.
I was also impressed with how reasonable the pricing was. For example, my daughters LOVE glow-in-the-dark bracelets. I saw this one on StickyJ's website for $22.95 which is almost identical to one offered at $44.95 elsewhere.
With prices like these, I can afford to order the girls bracelets to match any outfit as well as one for every holiday! And yes, I absolutely ordered one for Halloween that we found in the clearance section!!
Customer Service was awesome. I sent in my order as well as the girls' actual wrist sizes. Thank goodness for Pat in Customer Service because she reviewed my order and then recommended different sizes for the bracelets as well as different shaped Medic ID tags that would better fit my daughters' small wrists.
I placed my order Sept 12th. Customer Service emailed me within 2 days and the complete order was shipped to my house by September 20th.
The girls were beyond excited to open up the package and find their jewelry in a pretty little red bag. I was impressed with the quality of the jewelry and the engraving. I was pleasantly surprised to find that the engraving came already filled in black.
How cute is this one? Found it in the Clearance section, too!
Livie's ID bracelet not only glows-in-the-dark but also has mood-changing beads!
The back side has her name and our cell phone numbers.
Sure beats writing your cell # on your kid's arm with a black sharpie when you go to Disneyland!
Ella picked a blue rubber bracelet with sterling silver hearts
Blue for diabetes and hearts because, well, she's a girly-girl.
I will absolutely be placing more orders through StickyJ in the future. I had such a wonderful experience getting to know the owner of the company as well as working with their Customer Service department. The quality is great and it's offered at a very reasonable price.
Plus you get free shipping on orders over $50 in the United States.
I'm a sucker for free shipping.
SO...now the good stuff.
One lucky reader will win a $50 gift certificate to Sticky Jewelry!
Since writing this blog is about as high-tech as I get, here's how it's going to go down:
1. Leave a comment with your favorite StickyJ item, get 1 entry
I've been derelict in my blog-writing duties all summer.
So here's a quick snippet to get you caught up, with lots of photos to keep you interested.
Got a new Rock-Star room for her birthday...
Was a flower girl in Aunt Jessie's wedding...
(Yes, Livie was one, too)
Went to Diabetes Camp ALL BY HERSELF...
Cabin one Rocks!
Came home having had brushed her teeth twice and her hair once...
Got corn rows for the second session of camp...
(I know, I know, she'll kill me for doing this to her in about 5 years)
...with strict instructions to apply sunscreen and BRUSH TEETH daily...
Caught her first fish while visiting Grandpa John & Grandma Suzie in Oregon...
and started THIRD GRADE!!
(Those are fashion glasses, not real glasses..a girl's gotta keep up with the trends)
We are still LOVING the Animas Ping. The ability to disconnect during all-day swim sessions is awesome. Ella even tried a new site - her ARM!! - which helps us avoid rashes with more places available to rotate.
Discovered the delicious joy of sugar-free taffy at Diabetes Family Camp...
Enjoyed being spoiled rotten as an "only child" while Ella was a Diabetes Camp...
but decided it was more fun to snuggle with old Grandpa John instead...
And started 5 days-a-week, 8am to 3pm Preschool
(Can I get an Amen from the Mommas?)
I'm also thrilled to report that, despite her autoantibodies and abnormal OGTTs, her A1C is still rockin', her 2 hour postprandial numbers are well within the "normal" range and her fasting BG below 100.
Livie's Endo has told me to STOP WORRYING...
To only test if I suspect something and to do yearly blood labs.
We've completely quit TrialNet because it was too stressful and it's the best decision I've made since hearing the news.
DOMESTIC DIVO AND I...
Relished in how easy it was having an only-child while Ella was at Diabetes Camp the first time...
and then finally got smart and dropped Livie off with the Grandmas during Diabetes Camp Session Two and headed out to Palm Springs for a much-needed, adult-only, sleep-and-drink-and-food-and-love-filled getaway...
Our woes with rashes to adhesives started about 3 months after Ella started on the Omnipod.
It started with a small little rash once I removed the Omnipod.
It quickly progressed to a red, inflamed, itchy rash that would develop within 24 hours of a new Omnipod.
So, we quit the Omnipod because I wasn't about to do Omnipod changes on a daily basis and Ella's skin had taken a serious beating.
We've been plugging along with Animas ping for a few months now.
We do site changes every 2 days and full (insulin & site) every 4 days.
That seemed to work swell.
Every once in a while she'd have a rash after 2 days but it cleared up quick with a low-dose corticosteroid.
But now that it's summer and she's swimming every day, I noticed she develops a rash to the site very quickly.
So we're having to do DAILY site changes.
So imagine how thrilled I was when, after having done a site change at 7am on Monday, Ella tells me a mere 12 hours later that the site is itchy and she needs to pull it.
I think I pouted like a 3 year old and said, "FINE - PULL IT!"
And slammed a new site on her tooshie.
But when I pulled the little plastic inserter gizmo thingy off, I noticed the fat part of the site, where the little insulin connector thingy plugs in, hadn't stuck all the way down and I could see underneath the site where the cannula was in about 3/4 of the way.
So I did what any responsible Type 1 parent would do: I pushed it down and then I texted my T1D Mommas to see if they thought it would work. The consensus was it could go either way and they all wished me luck.
I know you're dying to know the results, so here's the play-by-play:
7 pm: Insert new site. BG 96. Looking good.
9 pm: BG 160. Hmmm....could be the pasta she ate for dinner. Small correction.
11 pm: BG 170. Not bad. Still could go either way. Small correction.
And so busy, really, that diabetes has taken a back seat in our lives.
This makes me happy.
Right now I should be doing laundry.
Laundry does not make me happy.
So I am blogging instead.
In an effort to catch you up on the last 7 weeks, here's a summary, with photos, to keep you interested in our mundane lives.
Ella started karate and loves it.
It's super fun to watch her blood sugars go up when they start sparring.
Adrenaline spike is for real, folks.
Domestic Divo took me to the Santa Ynez Inn for a quick over-night stay.
First time being more than 10 minutes away from Ella since diagnosis.
It was awesome.
Shout-out to the Grandmas for watching the girls.
We organized a Family Picnic for the Diabetes Outdoors organization and had a great time hanging with all of our D-friends
Ella Turned Eight!
We celebrated by having a "Rock n' glam" sleep-over party.
Lucky for me only 5 of the 11 girls actually spent the night.
Ella invited one of her little D-buddies so I rocked 2 CGMs all night long...
And, of course immediately AFTER I sent the above photo with the text, "I am the best pancreas EVER!!!" to my fellow D-Momma, her daughter spiked into the 300's and mine went up into the high 200's.
Party pizza at 10:00pm = no bueno.
But the girls had a BLAST and that's all that matters
Ella and I went to a Mother/Daughter Camp where we ate ridiculously large brownies and cookies late at night, swam in a freezing cold pool, shared ONE bathroom with 16 other daughters & mothers and slept like poo. But zip-lining with my daughter made it all worth it.
Which pretty much brings us up to now.
We are in the final home-stretch of school with the last day being June 14th.
Which is not only flag day but is also my 35th birthday!
For which I have requested we do absolutely NOTHING cuz this Momma is tired.
We started Ella on the Omnipod 3 month after diagnosis in March 2012.
I'd researched several pumps and it was down to either the Animas Ping or the Omnipod.
We chose the Omnipod for several reasons, the biggest being the benefits of not having a tube.
Ella spends pretty much all summer in a bathing suit and I thought trips to the lake and long days spent swimming in the pool would be easier without dealing with a tube.
On a personal note, for some reason I had a real issue with imagining a tube being attached to my daughter.
Domestic Divo and I both wore the pod around for 3 days before we decided to go with it.
He wore it on his arm and beat it up at work, putting it through vigorous physical training exercises and all of the other activities a firefighter goes through during a 24-hour shift.
He did knock it once on a door and had to add a little extra tape to keep it secure, but he was pretty impressed overall.
I wore it on my back-fat. Insertion was surprisingly painless, but it was super irritating when I was driving because of the spot it was in and I did notice a little tenderness the first day.
Other than that, I pretty much forgot it was there and it stuck the entire time. So well, in fact, that removing it was the most painful part.
So, we went ahead and slapped one on Ella.
The pod system was so easy to use.
All you need to do a pod change is in one nice, neat little package and it's all automatic.
You fill the pump with insulin and it's pretty much auto-pilot from there. It primes itself, you stick it on, hit go and the needle inserts the cannula.
The menu and navigation is super easy, too. Very user-friendly.
I also really liked the built-in freestyle meter, although I did find that the standard code 16 gave me false low readings and I had to use code 17 for code 16 strips.I searched the web and found others with the same issue, so this wasn't unique to us and I just went with it. It worked.
As summer approached and Ella spent more time in the water, we noticed we had to do more and more to make the pod stick all 3 days: skin-prep, skin-tac, additional tape over the pod, constant taping down of the pod, arm bands, leg bands, sports tape, kinesiology tape...you name it, we tried it.
And while I envied those who simply had to use a swipe of alcohol to make that bad boy stick for 3 days, I still continued to hold fast to our decision that the tubeless pump was worth it.
And then we started to notice a really bad rash under her pod site.
Every new site we rotated to would develop a rash within a few weeks. We tried rotating from toosh to arms to legs but the rashes just wouldn't clear up and eventually by the end of the year, we'd completely run out of usable skin. She had rashes like this on her toosh, arms & legs.
We tried every type of wipe and cream imaginable. Using alcohol wipes, not using alcohol wipes, hibacleanse, bard's barrier wipes, skin-tac, skin-prep, cavilon, tegaderm under the pod, IV3000 under the pod, hydro cortisone, corticosteroids, yada yada. We would pop a new pod on and within 24 hours she would be SCREAMING to take it off saying that it felt like, "10,000 mosquito bites."
So we were doing pod changes every day, and usually at night. And anyone that knows the pod knows about these things called "post pod change highs" -just google that phrase and you will get millions of hits of people complaining about this. For us, any time we did a pod change after 6:00pm, we would have high sugars lasting for HOURS. And I'm talking HIGH. Like 300's that wouldn't come down until after about 2 to 3 corrections. I've seen ketones from post-pod change highs.
So, as you can imagine, not only were we getting no sleep but I also was so worried about her losing her toes and vision.
We finally went back to to MDIs and I hauled her into the dermatologist's office because the rash just would not clear up. The dermatologist put her on a mild corticosteroid (aclovate), Epiceram Cream, benadryl at night, zyrtec during the day and an antibiotic because the rash was so bad it was infected which is why it wasn't clearing up.
And finally, FINALLY, I thought: Why the heck am I doing this? This pump does not work for my daughter. I am SO SICK of all I have to do to make the dumb thing stick for 3 days and then I am SO SICK of seeing a nasty rash underneath it when it does come off and I am SO SICK of POST POD CHANGE HIGHS!!!
I was worried my insurance company wouldn't cover a new pump because usually their policy is one pump every 4 years. I didn't care. I was willing to pay $5,000 dollars out of pocket to get my kiddo on a new pump. Luckily, my insurance company accepted my Endo's Letter of Medical Necessity and the Animas Ping was delivered to my doorstep a few weeks after I started the process.
So, how is life with a tube?
NO BIG DEAL
Ella's favorite pump sites are tummie & leg. We reserve tooshie for the Dexcom.
We've tried a variety of pump pouches and currently her favorite is the double spi-belt so she can wear her pump and her Dexcom receiver.
(Livie makes us put a site on her, too. Don't worry - I cut off the cannula and just stick it on her)
We have to change out her site every 2 days or she WILL get a rash. But site changes are a snap and guess what - NO POST SITE CHANGE HIGH! Hollah!
So we do a site change every 2 days and a full change (insulin change + site change) every 4 days.
She says the site changes for the Omnipod hurt WAY MORE than the Animas site changes.
Overall, I actually like the Animas Ping more than the Omnipod.
And, since this was a really long post, I'm going to provide a nice little summary about what I like and dislike about both pumps:
1. Tubeless (duh)
2. Easy to use
3. Built-in freestyle meter
1. Post pod change highs.
2. Site changes hurt (according to Ella)
3. Getting the darned thing to stick for 3 days
4. Nasty rashes#1
5. The fact that #4 lead to more of #2 and more of #1 = NO SLEEP
6. Inability to disconnect without having to do a pod change
1. No post site change high. It's totally seamless
2. Smaller insulin dosing (0.025 versus omnipod at 0.05)
3. Less wasted insulin
4. Pain-free site changes
5. Ability to disconnect and re-connect. LOVE!
1. Built-in One Touch Meter. I hate One Touch. Refuse to use it.
2. It requires a lot of button pushing
3. Not as user-friendly...takes a bit more time to learn
So, there you go. The story of how we started out with the pod but ended up falling in love with the ping. It was like we had to go through all we went through with the pod to realize that we were meant to be with the ping.
I feel a song dedication coming on.
I set out on a narrow way many years ago
Hoping I would find true love with the Omnipod.
But pods fell off a time or two
Wiped my barriers and kept pushing through
I couldn't see how every rash pointed straight to you
Every sleepless night led me to where you are
The pods that broke my heart, they were like Northern stars
Pointing me on my way into your loving arms
This much I know is true That God blessed the broken road That led me straight to you
I think about the nights I spent just muddling through I'd like to have the time I lost and give it back to you
But you just dose and take my hand
No hard feelings, you understand
It's all part of a grander plan that is coming true
Now I'm just bolusing
With my Animas Ping
This much I know is true
That God blessed the broken road
That led me straight to you