Destination ME

This post has been a long time coming.

First off, some background - I stole the title and the first sentence of this post from one of my favorite new (to me) blogs, The Princess and the Pump: A Type 1 Diabetes Blog. I can't remember exactly when or how I found the P and the P blog, but I'm almost sure it was late at night while I was trolling the 'net for information on Type 1 diabetes. The author, Hallie, is a wife, teacher and mother to a darling T1D girl. In her blog, Hallie chronicles the challenges they endure and triumphs they achieve with their T1D child. It is a wonderful resource for parents of diabetic children. 

Hallie's daughter is elementary-school age and was diagnosed at age 3. My T1D daughter is a freshman in high school and was diagnosed at age 12. The circumstances that Hallie and I deal with are probably very different, but still very much the same. Her daughter, being so young, is still dependent on her parents for her diabetic care. My daughter is fairly independent with her diabetes care, but that doesn't mean I'm not there questioning when she last tested her blood sugar and did she do a correction for a high number, etc. With all that goes on with having a T1D child, it's easy to lose yourself in it. Hallie's most recent blog post, Destination ME, is about how she is going to find her way back to herself. She will have a weekly post about her current goal, and she invited her followers to join her. When I saw that, I thought, "Count me in!" It was just what I needed. It was just what I'd been thinking. It is so easy to get caught up in our children and lose sight of ourselves. And having a child with diabetes - or any other challenging illness or circumstance - compounds that. 

Hallie's goal this week is to get more sleep. As much as I'd like to be original, I'm going to make that my goal, too. Sleep is where it all starts. 

I don't check my daughter's blood sugar in the middle of the night like we did when she was first diagnosed, so I shouldn't be as sleep deprived as I am. My sleep deprivation is mostly self inflicted. I find I can't go to sleep until after I know all of my kids are sleeping. If my T1D daughter has had a high or a low right before bed, of course I'm up with her until we get her numbers in check. But even when everything is going well, I tend to stay up until I know everyone is asleep. With two teenagers, this can be pretty late. 

Sleep is also important for me right now as I'm getting over this awful bout of pneumonia. I've been struggling with it since the end of July, and I'm finally feeling pretty good. So at the moment, exercise is out of the question. Getting more sleep would be the best thing I could do for myself. 

As I embark on this Destination ME journey, I know it's not just for me. If I can get to where I feel like myself again, my family will benefit, too. And my T1D daughter, a teenager, needs good examples healthy living. She doesn't need a grouchy mom with dark circles under her eyes. 

This goal won't be easy. It's years of a bad habit I need to break, but now is the time.

I'm going to say I'd like to be asleep every night by 11pm. That didn't happen last night, even after reading Hallie's post. But tonight I will stick to it. 

** I know I've been absent from my blog for months. I will definitely be back here more often, starting with Murrini Mondays (I have some awesome Halloween murrini to show off!). Then I'll post my new Destination ME goals on Wednesdays. I like the idea of putting a new weekly goal right in the middle of the week - it will change things up for sure. I probably won't post every day because that's when I get overwhelmed and just stop completely. But I'll take baby steps with my blog as I will with my new goals, so please check back!

Annie Goes to Washington

These last few days have been a little nerve-wracking. My daughter Annie went on her class trip to Washington, DC, over the weekend. This was her first time away from home for several days (aside from diabetes camp) since being diagnosed with Type 1 Diabetes last year. As her parents, we want her to experience everything the other kids her age are doing when it comes to education and activities, so we weren't about to turn this opportunity down because of her diabetes. But we also knew we had to research how to pack for a diabetic so that she would be prepared for anything. I did a lot of research online, and then I talked to my sister-in-law, whose daughter also is type 1. I'm happy to say that Annie had a super fun trip, and her diabetes didn't give her any major issues. She said she went low once in her hotel room, and once at a museum. She didn't have any sugar with her at the museum (she took with her spare meter that didn't have glucose tabs in the side pocket - must fix that!), but she was able to buy something to get her sugars back up in the normal range. Annie had only flown once before, and that was before diabetes. So she made sure to test her blood sugar on the plane to see if it dipped. It was just above normal. 

In terms of packing for a flight, here is my advice:

Pack extra of everything. Annie now wears a pump, so although she had changed her site right before she left and wouldn't have to until she returned, we still packed extra sites and reservoirs. 

Pack any medication - insulin, glucagon - in its original box with the prescription on the outside. 

Pack extra pump batteries, extra medical ID tags, extra glucose tabs or other fast acting sugar (and be sure to keep it with you at museums!).

Pack an extra way to administer insulin. We sent with Annie's insulin pen and a new cartridge and several pen needles, just in case there was a problem with her pump. 

Pack an extra meter. 

Get a letter from your child's doctor that explains that she's diabetic and will be carrying with her all of her supplies.

Put it all in a big ziploc bag and label it. Then keep it in your carry-on bag.

Annie's pump and meters were not supposed to go through the x-ray machine or body scanners (ok to go through metal detectors), so she was pulled aside for a pat-down. One of the teacher chaperones was there with her, and I can't say enough good things about this teacher for all she did to make Annie's trip so easy (I'll write her a note once I'm done with this post). 

Annie kept in touch with occasional texts, so I knew how she was doing and could send reminders to her to test her blood sugar. I think she did a great job! And I'm so happy she got to experience this trip and everything it had to offer. :)

First Diaversary

One year ago today, our daughter Annie was diagnosed with Type 1 Diabetes. So today is what is called her Diaversary. It's kind of a weird thing to celebrate - the anniversary of receiving a chronic illness diagnosis. But today we celebrated Annie, and the fact that she's been managing her diabetes so well over the past year. Annie has been testing her own blood sugar (8-10 times a day), administering her own insulin - first with a shot, then with an insulin pen, and now she is on an insulin pump. She's had the pump for 6 days now, and so far so good. So instead of about 7 shots a day, Annie does one pump site change (which is like an injection) every three days. 

We are so proud of Annie. This last year has been extremely challenging, but Annie has faced it head on and has handled it really well. She has come a long way since her diagnosis, which I blogged about here. So here's to more healthy years and many more advances for the treatment of Type 1 Diabetes. 

Diabetes Awareness Month

November is American Diabetes Awareness Month. It is also a special month to a host of other illnesses and causes, all very important, but I'll be focusing on diabetes. My daughter was diagnosed with Type 1 Diabetes 10 months ago, so a cure is at the top of our wish list. 

This is the army of mini Dinobeadies for Diabetes that are on hand right now in my Dinos for Diabetes section. Each one is $10, and proceeds will go to the JDRF. 

**Also, during November, everyone who purchases a mini dino will be entered into a drawing for a FREE bead! It's my way of saying thank you for all the support these little dinos have gotten over the past few months. These mini dinos have already earned over $1000 for the cause! I'm hoping to add a lot to that total during November.

During November I'll photograph the mini dinos with some of the equipment that comes with being a diabetic.

 This little blue dino is staring down the opening of the lancing device. Hold that hole on your finger, and with one quick push of the button a tiny lancet pops out and pierces your skin. This is how diabetics get that much needed blood sample to test their blood sugar. 

Next that tiny drop of blood is put on a test strip that's been inserted in a blood glucose tester. The pink dino above will be sure to throw away her used test strips. She knows that as cool looking as they are, leaving them on the table or the counter is not the best idea.

After a few seconds, the tester reads the amount of sugar in the blood. This dino is in the safe range, at 108. Way to go! Normal is from 70 to 130.

If it's time to eat, then a diabetic has to put insulin into her body before her meal. The orange dino uses an insulin pen for injections. 

The purple dino has picked out a pen needle, which attaches to the insulin pen and is used for the injection, which can be in the stomach, leg or arm. 

The yellow dino is hanging out on some glucose tablets. These sugar tabs help a diabetic with low blood sugar get her numbers up quickly to the normal range. Diabetics should always carry glucose or other fast-acting sugar with them.

Thanks for checking out my new mini dinobeadies for diabetes and all of their equipment! They all hope to help raise money for a cure for Diabetes.

Off to Camp

Yesterday we dropped our daughter off at summer camp. She'll be there for just under a week. She was excited and nervous, much like she was last year when she went to overnight camp for the first time. But this year she's at a new camp - a camp for kids with diabetes. And it's right across the lake from the camp she went to last year. It's completely possible for kids with diabetes to attend regular summer camps, but it's a very big challenge. Annie needs to test her blood sugar several times a day and needs to inject herself with the right amount of insulin before every meal. At a camp that isn't geared toward diabetics, it would definitely take time away from the activities, plus it would be tricky to get the dosing accurate. With Annie's diagnosis being so recent, we were not up for those challenges and we didn't want to put that responsibility on the camp. So we signed her up for diabetes camp, which is really just like regular camp - campfires, swimming, sports - only all the kids there have diabetes. Many of the counselors are diabetics, too (including Annie's cousin, who has attended this camp since she was small). This would be Annie's first time hanging out with other kids her age who are diabetics. Instead of being the only kid taking insulin before her meal, she'd be like everyone else. 

We got Annie to her cabin and unpacked a few things, then she gave us each a fist bump (I know, a fist bump!), told us to be on our way and quickly joined the other girls playing cards. I think she'll be ok. :)

But just in case I packed a little surprise - the OctoSqueedle I bought at Raven's Craft Creations. It's the cutest little octopus, and it has a little red spot on one leg as a reminder to test your blood sugar. Annie will love it. :)

Yesterday also happened to be the day former Cubs third basemen Ron Santo was (finally!) inducted into Baseball's Hall of Fame. Ron Santo, aside from being an outstanding player and the Cubs' hilarious color commentator in recent years, also had Type 1 diabetes. He played pro ball with diabetes, but it wasn't really known at the time. He has since done so much for the cause and was so determined to help raise funds to find a cure. Santo died before he knew he'd be in the Hall of Fame, but not before doing so much good for the Juvenile Diabetes Research Foundation. I read that he has raised over $64 million dollars for the JDRF. Awesome. Pretty cool that Annie's first time at diabetes camp coincides with this historic day for Ron Santo.

While Annie's at camp, I plan to make lots of mini Dinobeadies for Diabetes, with proceeds going to the JDRF. I'm hoping to raise over $100 by the time she gets back, so I'd better get torching!

Happy Monday!

Gifts from Across the Pond

This post has been a very long time coming. I've been wanting to share what two very special lampwork artists and one amazing bag designer did for my daughter. When Sue from FlamingEck and Laney of Izzybeads learned that my daughter, Annie, had been diagnosed with Type 1 diabetes, they hatched a plan to bring some cheer to her - all the way from the UK! Both Laney and Sue have been my online glassy friends for a while now, and they both live in the UK. Little did I know that they knew each other (small lampwork world), but I eventually figured that out and it made perfect sense that these two smart and funny ladies would be friends. They commissioned Lesley, a bag designer from Scotland (Hand Maiden Scotland - clever name!), to make Annie a special bag for her diabetes supplies. The three of them put together the most wonderful package for Annie, and when she came home from school one day it was waiting for her.

The purse/bag is done in a gorgeous red-white-and-blue paisley pattern, and the lining has little British flags on it - the perfect touch.

Ernie had to check out the packaging, while Annie found more treasures inside the bag.

Here she discovers one of Laney's famous Chook (chicken) beads that's turned into a purse charm. Laney also sent one of her gorgeous flower beads (I don't have a picture because Annie socked it away where I can't find it and she's not home to tell me where it is - but believe me, it's so pretty!).

And here she's admiring Sue's patriotic flower purse charm (she doesn't see pretty flower beads like that around here!). Sue even sent some of her awesome murrini for me!

This is the inside of the bag with Annie's supplies inside. In addition to a zippered pocket on the outside of the purse, Lesley designed it to have a pocket on the inside, which is perfect for her pen. There's even a little matching wallet that holds her pen needles. 

I can't even begin to express how wonderful it was to know that these women, who we have never met, thought of Annie and made these special, thoughtful gifts for her. It means so much. 

Thank you Laney, Sue and Lesley!!!

Beads of Courage for My Girl

Life certainly can be ironic. Or come full circle. You know, like a bead. On January 2 of this year, the last day of winter break for my kids, I took my daughter Annie to JoAnne's to buy some fabric. She was using gift cards she'd received for the holidays to buy fabric because she wanted to make bags for Beads of Courage, a program that I love to support. Beads of Courage provides beads for children who are dealing with serious illnesses - different beads are assigned to various treatments. As you can imagine, some of these little fighters have multiple strands that are filled with all kinds of beads. So Beads of Courage not only depends on artists to create beads for the program, but it also relies on volunteers to make special bead bags for the kids. Annie, who loves to sew, had wanted to make these bags for a long time. So that's how we found ourselves at JoAnne's, picking out some fun fabrics on January 2. 

On January 3, I called our pediatrician's office to ask about Annie's sudden weight loss and extreme thirst, symptoms we'd noticed for the previous couple weeks. With the New Year's holiday long weekend, it was my first chance to call after realizing just how severe her symptoms were. I was told to take her right in for a blood test, and that's when we got her Juvenile Diabetes diagnosis. I first wrote about that here. Since Annie's diagnosis, our time has been filled with doctor's appointments and educating ourselves about this disease. But in the four months since she was diagnosed, Annie did finally get to make her first Beads of Courage bag. Her grandma came over and the two of them spent an afternoon figuring out the pattern and making one finished bag. Annie was so excited to finally make it! She plans on making more.

The first Beads of Courage bead bag Annie made.

Shortly after Annie's diagnosis, I learned that Beads of Courage now has a Chronic Illness program, which includes kids like Annie who have diabetes. So after a few weeks I finally filled out Annie's information and signed her up. And guess what came in the mail a few days ago? Annie's strand of beads! It's a short strand, and we hope it stays that way. :) But each bead on there stands for something she's been through - from her nights spent in the hospital to her blood draws while she was there. There are also special bumpy beads that represent learning to take her own medicine - in this case insulin shots - so I made that bead for her, as well as one for learning to use the insulin pen (which is now how she injects herself).

It hasn't been easy, adjusting to this new normal. But Annie has come so far in the last four months and we are so proud of her. She was so excited to receive her beads - and for someone who has pretty much open access to all kinds of beads here, that's saying a lot! That's because the Beads of Courage beads were hard-earned, and that's what makes each and every one so special. Thank you, thank you, Beads of Courage.

Life Changer

This is a bracelet Annie received from a family friend. It's from Rachel's Cure by Design, which features jewelry designed by a teen-ager with diabetes. Portions of the proceeds go to the Juvenile Diabetes Research Fund.

I wasn't sure if I should write about this or not, but I think there are more reasons to talk about it than to keep it private. On January 3, our middle child, Annie, was diagnosed with juvenile diabetes, also called Type 1. In that instant, our lives changed forever. I had taken Annie out of school to have her tested because she had a couple of the symptoms that we were aware of (we have a niece with juvenile diabetes, and we also had had a diabetic cat). So when Annie was extremely thirsty to the point of being miserable and was also losing a bunch of weight, we knew something wasn't right. A quick test at the doctor's office confirmed our fears, and we went straight to the hospital so they could regulate Annie's blood sugar and begin to teach us how to care for her. To say it was overwhelming would be an understatement. The first full day there we met with an endocrinologist, a counselor, a nutritionist, a physical therapist, and of course, several wonderful nurses on staff. We learned about counting carbohydrates, monitoring blood glucose with finger pricks and insulin dosing. My husband and I were familiar with giving insulin shots because we had administered them to our cat for years. But there's a big difference between putting that needle in the scruff of a cat's neck and putting it into your daughter's belly. But we learned, and we did it. Despite having a niece who was diagnosed with diabetes at age 3, we didn't know nearly enough about the disease. We knew her parents did a lot of figuring before meals and they talked about a lot of numbers, but we didn't know exactly what it all meant. And more than that, we didn't realize what they must have gone through in the beginning, when their lives all changed. We are so lucky to have our niece (who is in college now) and her parents as wonderful resources while we keep learning to care for Annie. Their knowledge and support has been invaluable.

Since being diagnosed, Annie has returned to middle school. When she feels shaky, she heads for the nurse's office to check her blood sugar. She's still learning about her symptoms, but she is sure to check every time she doesn't feel quite right. For the first couple of weeks back at school, I would come in at lunch to make sure she was doing all right and to be there if she needed help with her shots. Now I include a note in her lunch with the amount of carbohydrates in it and the insulin dose. Annie pricks her own fingers now to check her blood glucose levels, and she gives herself the insulin injections, too. We're super proud of her.

My husband and I do blood glucose checks at midnight and 3am (another thing I didn't realize my sister-in-law and brother-in-law were doing back when their daughter was diagnosed). Annie usually sleeps through them, which is good. Something else I didn't fully understand before Annie's diagnosis is that kids with juvenile diabetes can eat what they were eating before they were diagnosed. They just have to account for it with proper insulin dosing. That's not to say that they should eat a bunch of junk and sweets, but those things are allowed.

So on our last day at the hospital, Annie decided to celebrate with the brownie supreme. You deserved it, girl.

I will probably have posts about Annie on here from time to time. I've learned that most people know someone or are related to someone with diabetes. I've also learned that one of my good glassy friends is a diabetic and another has a son with diabetes. Everyone is so helpful and supportive, and eventually I hope to be able to pay it forward to anyone dealing with a new diagnosis. So maybe a few posts about Annie here and there will be helpful to someone. :)

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Because of this major change in our lives, I've been cutting down on custom orders. I have a few that are still on my list and a couple I have promised and I will definitely do. But lately my free time has been hard to pin down, so because I can't guarantee anything by a certain date, I've had to cut back. I will still be listing new beads in my Etsy shop.