T1 Teen's First Night at Camp with Major Hypoglycemia

I get a frantic text (6 or 7 actually) about 10:00 pm. She is worried about everything. People, roommates, strange environment. We get her to a place where she is calm and says she can go to sleep. Whew! She was 94.

Thirty minutes later, she texts me and is absolutely having a panic attack. She is struggling with her thoughts, worried about her diabetes and about having a seizure, which she has never had, and was worried she'd be low all day the next day. You name it, she was freaking out about it. She then says she is hot and sweating. Shaking. I tell her to get her key and go to the counselor next door. She argues that it is really late and she is probably sleeping, but that only lasted for a minute.

She makes it next door and the counselor welcomes her in. Her CGM says 74 and dropping. I bet she was already in her 40s. She drinks two juices and turns off her pump for 30 minutes. She gets to feeling better. I change the settings on her pump. I'd rather her run a bit high, than low. Dude. She was in a rough place.

She got to feeling much, much better and realized all her thinking was low-thinking. If you have T1, you know what I'm talking about.  If you're a parent of a kid with T1, low-thinking is not pleasant. Your brain isn't working well. You think erratically and things can feel very bad and pretty scary. It sucks.

Anyway, I had her stay with the counselor until she hit 80.

She spends the day tomorrow in the marshes around Galveston. Say an little prayer for safe equipment (pump and CGM)! May the dry bag keep those items and her safe.

My T1 Kid is at Camp for Three Weeks! Freedom or not?

It is day 14 and I feel SO much better than I did on day seven. Day six and seven, in fact, I was a wreck. It was so quiet in the house and I hadn't made any plans. That was a mistake. Now, I used to think that quiet and solitude was all I wanted. I'd think, "If only I didn't have so many things to do, so many things to think about."

As the mother of a 12 year-old daughter with Type 1 Diabetes, my mind rarely gets the luxury of quiet. The space to do nothing; to think about nothing. Although, this usually has more to do with the "being 12,"  than with diabetes. I spend a whole lot of my life with some question, instruction, request, point of clarification or command right on the tip of my tongue. But with her gone to camp for three weeks, day six and seven kicked my ass.

We both knew she would be gone a long time. For years, she was very hesitant to go to this camp, but a buddy with T1 said she would go, too.  So we booked her first full summer session to Camp Sweeney, a camp for kids with T1 in North Texas, about an hour and a half from Dallas. It's been around since the 1950s and is a wonderland for play, fun and friends. They also learn a helluva a lot about being a kid with T1. They normalize it and prioritize it.

My busy mind enjoyed helping her pack for the adventure. We bought stationary, a journal, shampoo and conditioner, special name stickers, so her stuff wouldn't get lost. Lots and lots of stuff to buy, think about and do.

Delivering her to camp resulted in one tear spurting. While waiting in the medical check-in line, she pushed my camera out of her face...and my own blood sugar was low.  I could not stop the leaking. Thanks goodness I was at a diabetic camp; they had juice.

After making her bunk and kissing her goodbye 10,000 times, my husband and I went to a museum in Ft. Worth. This was our first freedom stop after 13 years of non-stop parenting and 9 years of non-stop diabetes care-giving. We had a blast! We were silly and laughed a lot. We even mailed our first postcard to our camper from the post office next to the museum.

The week flew by. I wrote every day, watched every live broadcast and worked. But the quiet of Saturday morning undid me. By Sunday, I was depressed. I could not get motivated to do anything. I just sat and thought. I had lots of existential questions and few answers, but fundamentally, I didn't know who I was without my role as MOM.

It felt like what I would imagine empty nest syndrome feels like. I felt very sorry for myself. It was rather pathetic, but it felt kind of cathartic, too. Like maybe this was less about my daughter going to camp and more about my daughter growing up.

Riding in my husband's 1966 VW Bug is like a happy pill!

My stasis didn't last terribly long. My husband grabbed me by the hand for a ride in his bug to the local snow cone stand. I got pickle juice, which matched my sour mood, but it really cheered me up.

I still tune in (almost) nightly for the live broadcasts from camp. I check the "cabin highlights" webpage daily, I send cards and emails, but I got into a new groove. I am far more comfortable in my skin as a woman, outside my roles as worker, wife, mother, caregiver. I feel settled and I hope she got settled with herself at camp, too.

This time apart may have had far reaching benefits for us as a family. And, I can't wait to pick her up Friday!

If I ever led you to believe T1 diabetes was easy...

...I'm sorry. Because it isn't easy. In fact, I have learned to cope so well that I'm surprised when I stop and look at all I have to deal with every single day. Stunned. Stunned by how much my daughter has to deal with every day.

Last night I was just too tired to get up and help my girl with a low, but o was awake and worried. My husband got up and took great care of her, even feeding her a completely unnecessary bowl of cereal and fruit with real whipped cream. She was starving at 3:30 a.m.

But at dinner she was 436. This after a long, long conversation on Sunday with her about being accountable for the food she eats and taking her blood sugar at school AND insulin. She is really struggling to keep her diabetes under wraps in middle school. Which means she is really struggling to keep it in control, too. I completely understand, but we challenged her to find a way to do it. She is smart, creative and capable of taking care of herself. So, she proudly told me as she got off the late bus that she checked her BG and got her insulin before lunch. Small victories. Then, she checks at home and she is 436. She burst into tears because she did everything right. Her infusion set was clogged. That doesn't make either of us feel better.

So emotionally, last night was rough. We had middle school drama to attend to and a diabetes triumph with the crashing realization that maybe no one is in control of this freakin' disease.

She was 115 when I went to bed at 11:00 pm, so I thought we were good until she stumbles in low. So this morning, I'm staring at her tired face sleeping and I know she isn't going to get up. She has standardized testing today and has to be there, but she just can't wake up.

I have crashed this morning. How can everything swing so wide in 12 hours? How is a growing girl supposed to manage this physically and emotionally? How can I have so little control over all of this? How can she be SO amazing and balanced and strong with so many obstacles that other kids her age don't face. I am so incredibly fortunate to have such an amazing kid.

I know I'm am a good mom, but really, I wonder everyday how I could do more to help her. I wonder if giving her so much responsibility is hurting her or helping her. She is 12. I wish I could send her to the school nurse so she could help take care of her, but that isn't my kid. She wants to do it herself. I wish I could have teachers gently remind her to check her BG before a test, but that isn't her or her school either. I wish she didn't have amazing field trips 9 hours from home with no cell coverage, so I wouldn't have to tag along.

And I also wish I didn't have diabetes, too. I almost can't write about it in the same post, because it is that big. My diabetes and her diabetes live in two separate worlds, because I struggle to do both successfully at the same time. I'm not "worried" about me. But it is totally there. I use a CGM to keep me from diving off the deep end. That's the best I've got.

I really wanted to post on Facebook this morning (or scream out to the world), "To anyone that I led to believe that managing T1 diabetes was easy, you were wrong." But I can't say stuff like that on Facebook. I don't want pity. But my friends have no idea what I deal with as a woman with T1 and a mom of a child with T1. I make it look easy. No one would ever understand. It is impossible to explain how much energy and spirit is required. None of my friends were up all night, worried all night, for their child's well being. It's just a tuck of the covers, a sweet kiss with a whispered, "Good night, sweetie! Sleep tight!"

When's it Going to be All About Me?

I don't really want it to be all about me, but I need it to be at least front and center in my life. I am the caregiver of a tween with T1 diabetes. I am a mom with T1 diabetes. It's hard enough to be a mom and pay any attention to self care, but I think that I have slipped comfortably into the role of martyr. On any given day I wouldn't say that, but if you look at my health vs. my kiddo's, I have consciously or unconsciously put her right in front of me, which provides me a battery of excuses for letting my self go.

So the New Year is upon us and I see carts in the grocery stores stuffed with veggies. My gym, the one I pay for each month and haven't seen in awhile, keeps sending me personal trainer promotions, and I need a new pair of jeans. Ones that fit me both vertically, as I am really tall, and in circumference, which has become more challenging that it should be.

I'm not yet at my mid-40s and I have absolutely noticed the five pounds a year they say women stack on just through the aging process, but my own diabetes care makes it so much harder. Insulin, technically, makes you hold on to calories and store it away, that way you aren't letting it run rampant through your body and out with your urine.

Well, viscous cycle, here we come. As I gain more weight, I need more insulin. As I take more insulin, I gain more weight. Screwed, if I leave things alone, which is what I want to do. I want to focus my energy on my kid and family and community and everything else, because focusing on me is exhausting mentally. The games we play in our heads are so disruptive and completely unnecessary.

So, I downloaded a pedometer app and am trying to hit 5,000 steps per day. This is a bit of a challenge when I sit at my desk for my day. Yesterday I hit 3,755 because I took the dog for a walk, but that kinda makes things interesting. How can I add more steps to my day? I am mildly challenged by this, which is saying a lot, because exercise is on my list of to-dos just below emptying the dishwasher, which has become a 20-year battle between my husband and me. I fill, but I don't empty.

Anyway, I am not promising any miracles, nor am I trying to meet some ideal body weight. I would like to fit into easier-to-find-jeans and I need to make an effort at putting my health on the list higher. You know the oxygen mask airplane spiel, right?

I am going to visit my dietician and have her tell me what to do. I haven't seen her in 10 years, so I probably have some stuff to learn. I am also dumping all the clamor and dialog swimming in my brain around what I "should" be doing. Or how I should look or what my outcomes should be.

I know many moms read my blog who have kiddos with T1. I know self-care is hard for you, too. If your willing to share, I wonder how you set aside your responsibilities for them, in order to take care of yourself? Let me know.

Wow! Highest A1c Ever for My Tween

We visited my daughter's endo after wearing the Dexcom G4 Platinum Continuous Glucose Monitor for about two weeks. They actually had some numbers to work with when they looked at changes to be made.

I really hate visiting this practice. In fact I hate it so much we hardly ever go. Every appointment is two hours minimum and they want us back every three months? Crap, who has that kind of time with a middle grader in magnet school? I was dreading this appointment because we switched doctors so we could get in at the time I wanted. She is new and I was anxious.

Turns out I love her. She is young and related to my daughter really well. But she delivered some harrowing news. News I shouldn't have been surprised by, but it was a shocker. 8.8 Hemoglobin A1c. Dude. 8.8.

I remember being 15 and hearing the numbers 11. Yeah, really. I would sit in the endo office waiting room filling in weeks of my log book with 151, 127, 210, 101, 98, 164, 175, 97, 120. I remember the him looking at the numbers when he asked to see my hands. He looked at my finger tips and them showed me. Busted. No evidence of taking my blood sugar and back then the lancets were fat and damaging.

All throughout the holiday my kid has been drifting in and out of the 200s. Only when I give her a 125 percent basal increase does she stay closer to normal. Her sensor died a week ago and begged to have a break from it, so I'll put it on her today, but this is freakin' hard. Hormones are a real bitch!

By the way, she wore the first sensor nine or 10 days and the last one more than two weeks. It started irritating her where the corners of the rectangle poked into her skin, so I think we'll stick with one restart.

Updates on my non-blogged about husband in the next post. Bad news. Type 2 is real diabetes.

Amazing! Love Dexcom G4 Platinum

Anyone who has followed my blog for some time knows my daughter, 12, has T1 and refused to her core to wear a CGM. I forced the Minimed one on her in 5th grade for exactly one week and she promised me to never, ever wear it again. It took me an hour and a half to get the thing on her and the only thing that worked was a threat that she could not attend a birthday party until she had it on.

The threat worked, but I did damage. The whole, "this hurts me more than it hurts you," may not have been true. It broke my heart. Here I had in my hands THE thing that could make my life easier as a mom of a child with T1 and she didn't want it. She resented me forcing it on her. It also hurt.

Well, she is in 7th grade now and this morning her blood sugar was 135. In fact, in was in that range all night. I checked it by rolling over and looking at a hot pink Dexcom G4 Platinum Continuous Glucose Monitor!

My daughter and I were headed out of town Friday with her best friend. We planned to leave at 4:30 p.m. and she got off the bus at 4:00. She hopped in the car and I handed her the already charged receiver and she thought it was too cool!

I had everything ready to go to put on the sensor on and was all smiles when I said we needed to get it on before her friend arrived at 4:30. We danced in anticipitation for about six minutes, but I didn't lose my cool. I stayed smiling and encouraging and finally she said, "Just do it!"

I counted to three, pushed the plunger, pulled back the collar to remove the needle an carefully removed the inserter from the sensor base. Putting in the transmitter is awkward and was probably the worst part, because you have to push down hard to get it to click twice into the sensor base, but she was OK. We agreed, that was indeed the worst part.

She and I were both surprised that the transmitter is so much thicker than the Dex Seven Plus. Really, it is tall, but right now, in winter, it isn't an issue, but come summer, we are going to have some issues I suspect.

Anyway, we hit the road and she calibrated in the car two hours after starting the sensor and about an hour from our destination. Interestingly, her first BG check was 237, so she entered it as one of the first two calibrations. Her next BG was 135, so she entered that. The receiver asked for another check, thanks to the wide disparity, so she checked again and it was 132. The calibration took! I think the Minimed would have just said Cal Error and I would have had to wait and try again later.

Spending the night at my sister's house was to be the highlight of our trip. I was going to stay with my mom and my daughter and friend with Aunty, Uncle and baby. Her first night, my sister was up with the baby at 5:30 a.m. and she heard this crazy beeping. She text me to ask if she had an alarm set, but I was zonked out. She finally went in to investigate the sound and found her Dex buzzing and beeping. It said LOW in red letters, 55. My sister had trouble waking her up, but finally got a glass of juice in her. I am SO grateful! So, so grateful!!

It has been within 10 points accurate and is supposed to be stellar from day four to seven.

I asked my daughter last night what she thinks of it so far and she said she loves it!

More later about the pros and cons. I downloaded and used the software, have issues with the alarms and the transmitter size, but need a few more days to evaluate. For more info, read Kerri Sparling's blog Six Until Me for her first and second impressions of the Dexcom G4 Platinum.

For What It is Worth, I Asked the President for Help

Tears streamed down my face this morning as I wrote a letter that will be read by an intern and probably never be seen by anyone who could offer help. I had to try though. Maybe if I write every single day, the White House can knock on the FDA's door and ask them what the hell is taking so long.

I simply can't understand. I won't understand how a product being successfully and readily used since 2009 in Europe, can take so long to approve here in the US. What is WRONG with this picture. And, when it is finally approved, American's will be falling over ourselves thankful to have four or five year old technology. I certainly don't blame the President for this, but I do think he could help. Just asking the question, "What is taking so long?" and "When is the Medtronic Minimed VEO and Enlite Sensor being approved and made available to Americans." It would be nice if there was a question about what the hell took so long, but I'm not picky. I just want this pump and CGM for myself and my child.

My frustration is palpable. My desire to take care of my child and myself with the most comprehensive technology available is beyond words. My anger that I can't have what has sat on market shelves for more than three years in Europe literally brings me to tears. Problems this illogical really get to me.

So, I better get to work and hope that someone is doing something out there for the millions of people living with this disease. Something beside making another stupid glucose meter in a new shape or color.

Type 1 Diabetes, Motherhood and Control Don't Mix

Yesterday morning at 6 a.m., some rumbling thunder woke my daughter before I could come get her out of bed. I was in the office downstairs and sighed deeply, gratefully, because waking an 11 year old takes about half a century every morning. I usually roll her around, push on her, tickle her and check her blood sugar until finally, after threats of missing the bus, she pulls herself up.

It isn't over at that point, because she has to be physically out of the bed before I can walk away. Her snuggley green blanket and pillow are just too tempting.

But this morning, I heard her sleepy feet hit the floor and she called down good mornings. I replied cheerfully with a reminder to check her blood sugar. A few minutes later, as I take the couscous off the stove for her lunch, I hear her call down.

"Mom. I'm 439." I head for the stairs and She is standing there and I can see she is already thinking of how she can avoid an infusion set change. Such a pain in the neck, and it was only two days ago we changed it.

I give her a shot of insulin for half the correction and change her infusion set, giving her the other half of the corection. She sits down, looking pale and tired and says she feels nauseous. We check her ketones, and of course, they are high. I get her some water, and even a bottled green tea, and tell her its the best medicine we have next to insulin. That if she can just sit tight and sip the water every few minutes, it will help her feel better.

She has about 10 minutes before the bus comes and she says, "I'm okay. I'll take a bottle of water and get to feeling better on the bus." She struggles to put her things in her 60 pound, 6th grade backpack. She looks at the clock, sighs, and continues to stuff. I take her hand, gently pull her up to a standing hug, which she doesn't resist and I say, "Go watch TV, drink water and we'll get you to school late." She relents.

She is in a middle school magnet program for the Humanities and Law for International Studies and really likes school. Missing school for any reason is tough, as every minute in class is crammed with content, but she felt like crap. So, she trudged upstairs, kicked off her rain boots and curled up to watch TV. I implored her to drink. Again, nothing except water and insulin will help, but I know her and she won't.

So the struggle begins for me. Just last night she told me a story about her best friend in theater class the day before. Her friend attended one day of a diabetes summer camp with my daughter and got this awesome backpack, along with all the other families. Her friend's regular backpack broke last week (under the weight of eight classes of books) and she pulled out the camp freeebie to use. In theater that day, her friend had left the backpack open and some girls saw inside and started taunting her, "Ooooo! You got diabetes! Mmmm, girl, I can't believe you got diabetes!" The freebie backpack was labeled inside with "I Have Diabetes" and a list of doctors and phone numbers to call in an emergency.

Her friend quickly stammered, "No, no I don't have diabetes. It is just a free backpack I got." The mean girls kept it up and her friend was left to "defend" herself against the attack.

This story gave me pause. It shook me to realize how fragile middle schoolers are around fitting "in." It made me think, why the hell is this a big deal, but my daughter has told me often enough, that you have to lay low. Anything that sets you apart as different, can turn into a problem. You don't want problems in 6th grade. You have two more years with these growing kids and smooth is the best path.

It upset me that her friend had this reaction, but I know it couldn't be helped. She was being "accused" of having diabetes and the stupid freaking two different diseases have become one in most people's eyes. I get very defensive about the metabolic disorder, T2 and the immunosuppressive disorder, T1. Defensive is what I get. Pissed off really.

I remember being at a loss for words after this story. Delicate lines to dance around when dealing with self confidence and a chronic disease. I think I simply said, "Well, I guess she is lucky she doesn't actually have to deal with diabetes."

So, as time ticked by yesterday morning, which felt like forever to me, her blood sugar was dropping slowly, but she still felt nauseous. I implored her to drink, and she wouldn't, because of course, she felt like total crap. I got angry that she wouldn't even try and this is the circle of motherhood that I wish I could jump out of. I wish I could quit feeling so completely compelled to tell her what to do and expecting her to do it. She doesn't. Not because she is defiant. Not because she is contrary, but because she has her own mind and can think for herself. Her thoughts are often different from mine, which infuriates me (and overwhelms me with joy). Every time I open my mouth, I think that maybe she will really "hear" me this time. It is important. My words matter and can help her, if she would only listen. And it never works. I am a communicator, and my words don't matter.

However, over the long haul, I know my sage advice does make a difference. She makes great choices, does awesome in school, is loving, kind, compassionate and extraordinarily independent. But in the moment of this morning, with pale skin, nausea, all curled into the fetal position, I want her to drink water. I want her to try to help herself feel better. I know how to do it. JUST LISTEN!!

She takes a tiny sip from her bottle to get rid of me. To love me. To quell my need for control.

I relayed this story to a friend at dinner last night. It's been weeks and weeks since I spent time with my friend and she listened to me gap-mouthed. When I was through, she said, "Uhh! I had no idea. You never talk about diabetes. I thought she was doing really well." To which I replied, with realization that I don't talk about it, "This is part of what we do every single day." Many, many days are good, more than we would care for are not so good. It is a struggle that we handle very, very well, but the struggle, the care, the energy to maintain diabetes is constant.

It took my girl about three hours to feel well and see her blood sugars in normal range. She was starved, so I picked her up a fast food breakfast (parental guilt reward for enduring diabetic nightmare) and dropped her off at school. I beg her to take her blood sugar at lunch, and she does, like she does everyday, but really that only happens about 40 percent of the time.

I kiss her cheek and send her off.

Now, here I sit to unload all the layers of the last 24 hours, which mirror that last 27 years of my life and the last six years of hers. There is no sadness in this, I am not depressed or hopeless. I'm very proud of my daughter. Frankly, I am proud of myself. But this is real. The challenge to manage and control so many things that are completely outside of me. The challenge is containing all those layers of love, care, concern, compassion, and frustration; keeping them from containing me.

Ten is a Magic Number and When Girl's Brains Drain Like a Sieve

I've fallen off the blog for awhile, but I have a new mission and I welcome your help. My daughter just turned 10. She has been an amazingly compliant and helpful kids with diabetes. She knows more than most people about the disease and has always been very independent in her management.

On one of my previous posts, a reader told me to, "Let go. If you don't want Mutiny how about listening to your child instead of being a constant nag." Fair enough. My post was mostly sarcastic, but the fact is that every single day this week she forgot to take her insulin at one point each day, we ended up having lots of talks. I asked, "What would need to happen for your to remember to take your blood sugar and insulin?" She looked me in the eyes and said she honestly doesn't know.

I asked her what the benefits would be if she remembered and we talked about those. I also asked what the downside of not remembering is and we discussed all the ways that it sucks.

She is a SUPER kid. Bright, fun, loving, not rebelous at all, but she is just not remembering the task at hand. So I started asking friends about their girls, kids without diabetes, and it appears that 10 year old girls develop holes in their brains.

I did some more asking around, teachers of fith grade included, and they all agree that at this life stage, that self-centeredness abounds; that they really can't think the way they did even just a year ago, which explains a lot.

Another friend, who has a 10 year-old girl and a 12 year-old boy, told me he has been reading a book, Getting to Calm: Cool-headed Strategies for Parenting Tweens and Teens, which takes you into the emotional and mental world (brain) of our growing kids. I haven't read it yet and I tend not to enjoy books full of good advice (I read the first 30 pages of How to Tall, So Kids Will Listen. How to Listen, so Kids Will Talk about eight times). But here's what my friend, who has read a lot of it said.

He said that the girls at 10 are in a stage of "pruning and blooming." Their prefrontal cortext is said (simplified) to "orchestrate thought and action in accordance to internal goals." At this age, this is being "pruned," so to speak, meaning that developmentally, this part of the brain is somewhat out of order for a period of years often referred to by parents as teenage hell.

He said that beginning around age 10 for girls, they are very challenged at staying on track; starting one thing and moving to the next and then to the next. Diabetes is very much a series of steps that align with an internal goal of staying healthy and keeping mom out of her business.

So here is one scenario this week.

Snack time at school, 10:00 am
R: "Hi Mom, my blood sugar is 218.
Me: "OK, just please remember to put your blood sugar in your pump if it has gone off screen."
R: "Ok, Mom. I will. Love you. Gotta go!"

Lunch Time, 12:30 pm
R: Mom. Uh. Mmm. Uh, Mom? I don't know how this happened, but I'm 428.
Me: Ok. Did you take insulin for your snack?
R: Uh, I think so.
Me: Can you check your pump please?
R: Uh. Ok, hold on a sec. Mom? No.
Me: Ok. Didn't we talk at snack time? I believe you said you were 218. Don't you remember me telling you to be sure to put your BG in your pump?
R: Yes.

You know how the rest goes. Correction and everything is fine...until Wednesday. Same scenario, but she was at a friends house for dinner.

R: I'm 400.
Me: What did you eat?
R: Barely anything. A few crackers.
Me: Did you have milk?" She shakes her head, no. "Did you have any other carbs?
R: No...Oh! wait! I did have one of those, mmm, what do you call them? Mexican breads with the sugar on top?
Me: What kind of bread? Pan Dulce or the crispy ones rolled in sugar?
R: Uh. Those.
Me: Did you take Insulin?
R: I guess I forgot.

I am actually ok if she has a treat, but she knows full well, that that means she has to take care of that snack. She KNOWS this!

So, I need some strategies to help her remember, because it is obvious to me that everything has leaked out of her brain.

Today, I gave her a green rubber O-ring bracelet and told her that this is a physical reminder to take her blood sugar and take insulin. Her teacher is going to help remind her, but also give her something to tape to her desk which will remind her of these important tasks.

So, any advice you all have is welcome. I am totally willing to support her until her brain is whole again (18 or so they say), but finding ways that don't embarrass her, make her diabetes overt to anyone else and aren't hard for me to manage are the goal.

Another diagnosis

On Facebook tonight I learned that a colleague's son was diagnosed with diabetes at two years old. He asked for warm wishes and helpful" We'll get through this" advice. He had 23 comments at last check.

I sent him a message and said I am happy to help them anyway I can. My experience with diabetes for the past 26 years and three days (Oct.13, 1983) will be helpful. My experience with a daughter with T1 for five years and two months will be welcome, I'm sure.

However, my long message offered very little advice; that two of the three available doctors are best, and that it really will be ok.

What more can you say on the eve of diagnosis?

Nervous

I can't help myself. My daughter is spending the night at friends tonight, I got her last blood sugar reading at 9:15 pm and it was 137, but I can't help but be nervous when she isn't with me.

Ugg. She is becoming so independent (4th grade this fall) and she is so capable of taking care of herself, but I am still nervous. I guess that comes with being a mom. To add diabetes to the layer of complexity between a mother and a daughter is a lot to ask of any human being.

"Control" The Dreaded, Overarching Theme with Diabetes

Wow! Control is such a loaded word in diabetes care.

¹con·trol

Pronunciation:

\kən-ˈtrōl\

Function:

verb

Inflected Form(s):

con·trolled; con·trol·ling

15th century

transitive verb1 a: archaic : to check, test, or verify by evidence or experiments b: to incorporate suitable controls in controlled experiment>2 a: to exercise restraining or directing influence over : regulate b: to have power over : rule C: to reduce the incidence or severity of especially to innocuous levels <control an insect population><control a disease>
In diabetes care, it isn't that simple. My daughter (8, almost 9) feels very in control of her situation. I am very proud of her, but my husband and I have very consciously worked to empower her and have made LIFE first, diabetes second.
I would LOVE to hear from parents who have figured out the "control" balance; parents who give their kids space to be, take care of themselves and found a way to "let go," so they can fly.
Please share your stories, I have readers who desperately need to hear from you. How did you move away from diabetes running your lives and go back to living?

Self-Care Gift for Moms

This post is especially for moms living with Type One Diabetes. Whether you have diabetes yourself or you care for a child with diabetes, self-care is vital to our survival. It is something that took me a long time to learn and I still have to remind myself that if Mama ain't happy, ain't nobody happy!

With that, and the approaching Mother's Day holiday, I wanted to post a very special offer for Moms (or Dads that have the sense to take this offer and give it to their lovely wives).

FREE MOTHER’S DAY BOOK OFFER
Download a free copy of life balance expert Renee Trudeau’s award winning The Mother’s Guide to Self-Renewal: How to Reclaim, Rejuvenate and Re-Balance Your Life for 48 hours: May 8th-May 10th at http://www.mothersguidetoselfrenewal.com/ Sign up today!

I learned most of what I know about self-care from Renee Trudeau, a career and life balance coach in Austin, Texas. She introduced the concept of filling my cup first (yes even before my T1 child's) and also how to say "NO." She put all she knows into the very loving month-by-month Mother's Guide to Self Renewal.

Happy Mother's Day! Oh! My girl and I are featured in Month Four of the book.

Time goes by...

It is amazing to me how fast things move. A week just shot by in a fraction of a second and it scares me when I hear things just get faster with age.

I'm a less than a month away from turning 40 and have 25 years with diabetes under my belt. I just went to the eye doctor and my eyes are perfect, except for my need for progressive lenses (I'm getting old, duh). Went to my Endo and spent 20 minutes talking with him about a lot of things. Wasn't a ton to talk about with my diabetes. We made some adjustments because I am running high after I eat a bedtime snack. I need to make more adjustments still.

I don't wear my CGM as much these days, but when I do, I seem to run in really good control most of the day and night, except after bedtime snack.

My daughter on the other hand, has been swinging like a monkey in the trees lately. I made some changes to bolus and basal, but I haven't seen things even out. I am watching the trends and then, *snap* a week has gone by and I haven't figured her out. My only thought is hormones must be raging as she tops 4'6" and 87 lbs at 8 years old.

We suffered a serious loss in the past 6 months. My daughter's diabetes educator left the practice we go to. Anyone with diabetes knows that our doctors don't know diddly compared to the Diabetes Educators. She was really our life line. I would call her day or night and she always had an answer. Perhaps it was many years taking care of diabetes peds patients, many years with diabetes herself or all the training she got taking care of her son with diabetes. She is AWESOME and I can't call her anymore. :(

And since she left, I don't feel connected to that office anymore. I like the doctor fine, she is brilliant and loves my girl, but I feel like I lost my "go to." As time slips by and I watch her blood sugars bounce, I start to feel lost and have no desire to call the office for help. THEY don't know my kid like SHE did. Kinda angry about it still, but again, time moves so fast for me now that I can understand how a grudge could linger for half a year or more.

My months may be gliding by, but that has also served me well. Nights and days of worry over fever and flu, days of lows that just never seem to come up. Super-rubber-ball 400s, then 30s in a three to four hour period; they all smooth out over time. I have found, that if I can stop and hit the pause button, breathe, and look at what is going on , do what I have learned to the best of my ability, that things always seem to work out fine. It isn't the individual blood sugar readings that matter so much, it is what is happening over time.

My last A1C was 7.2 and I was thrilled. I know, we are supposed to shoot for 6.0 to 7.0, but 7.2 made me jump for joy. Remember, I ran high for many, many nights at bedtime, but the rest of my 24 hours in a day I did very well.

Can I make improvements? Always! But my averages are good, I have no complications, I am enjoying my life, I am able to care for my girl AND I can stop and hit the pause button occasionally and appreciate all I have learned. I can live with this without being afraid; I am not afraid.

Camp Sweeney, Here we come

My girl and I are headed out today for a family weekend at Camp Sweeney for kids with T1 diabetes. The weather is supposed to be spectacular, but I think it is still a bit early to swim in the lake.

Last year my girl (then 6) went to Sweeney for a week-long camp and she spent a lot of time crying. She is very attached to me at bedtime and had a very hard time with home sickness, so this year we decided to do the weekend camp together. Little does she know, this weekend is prep for the three week camp next summer. Her daddy and I need a break!

She'll be 8, turning 9 at the end of summer then, and I figure she'll be over us (Ha!). So hubby and I are planning a trip (in our heads) to the Mexican Riviera, even if it is just for four nights or so. We haven't spent "quality" time alone since she was born. Actually, our last vacation alone was during the Millennium New Year where we went to San Francisco. I was pregnant and didn't know it until I got home from the airport at nearly midnight and peed on a pregnancy test.

My man is starting a new position with UPS as a driver, so he can't travel with us this weekend. He has been clerking there for 2 1/2 years, which allowed me the flexibility to start my own business, as UPS provides full benefits to the WHOLE family not no cost (besides his sweat & blood); he just had to work minimum of 25 hours per week. He has worked nights for as long as he's been there and operated another business from home during the day.

So, this weekend is a test run, prep for future spousal vacation. We'll have two weeks vacation next summer to use and I hope my girl is ready for three weeks of fun at camp.

My Seven Year-old Holds onto her Routines--TIGHT!

I have had diabetes for 24 years and I go through periods of great diabetes focus. Then, I get tired and just can't over think it anymore. My blog hiatus since December is evidence of where I am.

My daughter's care has been challenging. Her A1C is up and our vigilance has slipped because this disease is frankly really inconvenient. Let me say, we still test 10 times per day, but I have been more likely to forget to tell her the carbs for her snack she grabs in the middle of tree climbing. Thirty minutes later I have the flash, "DAMN, I forgot to tell her the carbs!"

She rarely goes too high, nor does she go too low, but she doesn't sit at 100 all the time either. You know the infusion sets are becoming a problem in terms of viability. They aren't lasting as long and I suspect this is due to scar tissue build up. I just gave advice to a dad looking at pumps for his eight year-old and said to be sure to promote site rotation right away; this has eluded us entirely. My girl likes it on her rear and that is IT. Just the thought of doing it on her tummy or thigh sends her into a panic.

I have really noticed how routine and the specificity of that routine is extremely important to her. Getting her to try anything new is just exhausting. We went to the video store on a rainy Saturday and I thought she would really dig seeing the Muppet Show; I remember how darned funny it was when I was a kid. Hys-ter-i-cal! She groused all the way home from the store and FINALLY, half way into the third episode with Gilda Radner, she began laughing. Now she is hooked, but it took two and a half episodes and that is a long time in kid time.

So, imagine me trying to get her to try an new type of infusion set or a new site. It is just too exhausting, so for now Good is Good Enough.

Photo from: http://en.wikipedia.org/wiki/The_Muppet_Show

Serious Symlin Scare--It all worked out, but carry Glucose Tablets!

Oh! My! Last night I was rushing around to get dinner on the table, getting my daughter ready for a sleep over, sending my hubby off to work. I made a HUGE regular pasta (vs. Dreamfields) dinner and took my Symlin, but FORGOT to take half my insulin; I took the whole dosage with a 60g carb bolus.

About 20 minutes after I ate I realized what I did, so I grabbed a 30g carb instant breakfast and got my daughter out the door for her sleep over. As soon as I made it to my friends door I felt myself slipping.

We were touring around her new home, admiring this and that when we made it to her bedroom and I plopped down on the bed. I felt awash in fuzz. I pulled out my pump/CGM and I was 70 with a down arrow 30 minutes after eating. I KNEW I was in trouble, so I immediate drank 30g carb of OJ. I slipped to 60 in five minutes.

My friends were talking about shopping for houses and I just blurted out that I couldn't listen to anything anyone had to say and promptly planted my butt on the sofa. My friends looked at me and I was not all there. I was glassy eyed and pale. I looked at the CGM again, 52! Yikes! I drank almost another full 8 oz of OJ when I realized my Symlin was preventing me from absorbing the OJ properly. It wasn't working!

I remembered (some how in my twirly/speedy low mind) a discussion of serious lows with Symlin from a Diabetes CGMS group, or perhaps from TuDiabetes.com, but someone mentioned that Glucose tablets were about the only thing that worked with these severe lows because they could be absorbed into the blood stream even as you chewed and as they made their way to your stomach.

I ACTUALLY had a Ziploc baggies filled with about 15 glucose tablets and I started eating. Did I mention my CGM was showing a drop so fast it couldn't even alarm. I was 40 with a down arrow and and I know I was MUCH lower. I sat on the sofa and my friends are like, "Hey, whats the worst case scenario here?"

I realized that this situation COULD get bad; this kind of thing hasn't happened to me in seven years, so I asked my friend to go to my house and get my Glucagon kit. She was gone 15 minutes and just as she walked in the door, my blood sugar went to 42. YEA! This is after the whole bag of glucose tablets--maybe 15 or so.

It took me almost 30 minutes to climb over 100. I hit 198 as a high afterward, which was AMAZING as I probably consumed 300g carb. Ok, I exaggerate, but who really knows.

Scary! Mom's, don't let your guard down when you are struggling to get everyone else's life inorder. A valuable lesson for me to slow down and be more caring of my own diabetes needs.

MY CGM saved my life. I would have totally flipped out without SEEing what was happening as it happened. I didn't have my BG kit, so I am unsure of accuracy, but I AM certain that it was incredibly helpful. I was able to keep my cool KNOWING what was going on.

Another thing--I will always have glucose tablets in my purse!

Minimed Sensor Backorder --four business days. Thoughts on CGM and my kid.

I ordered my Sensors for my Minimed Real-time CGM on Halloween, Wednesday,October 31 and got notification today that they were being overnighted. That was less than one week and I ordered a box of ten.

I'm pretty happy about this. Life without readings is basically life, but with no idea what your blood sugar is. Yes, I am supposed to be taking it, but I have gotten so comfortable wearing the sensor all the time, I just can't get back to my meter.

I had a sensor that was really rough on me as my last sensor. I bled like HELL and hurt when I put it in. I read on a forum that the ones that tend to bleed have had longer life, so I crossed my fingers and hoped, but it failed after four days and I wasn't going to mess with it. I just wanted it OUT!

I am still bruised and I took it out almost two weeks ago.

Not sure why this happened, but thankfully is was the first in 30 sensors to do this kind of damage.

I've decided to wait on the CGM for my seven year-old girl. I have come to find out that it isn't the insertion that worries her most (although it absolutely does), but it is the alarms going off all the time. You know what? That happens frequently. It will really extend the amount of time she is thinking or being reminded about diabetes, which is a lot and for right now, in this first generation of devices, I am willing to let her have some space with it.

Also, when the CGM is made so that I get the alarms on my mobile device, that will be a whole other story. It is a lot of responsibility for a seven year old to deal with the various alarms. Trust me I TOTALLY understand the benefits for her and me, but for now...we are going to wait.

T1 Kids--How do you handle diabetes care at school?

Today is day two of second grade for my sweet girl. Day one was awesome. Her teacher was prepared, the Teacher's Assistant who cares for her was on hand and ready. Her blood sugars were 92 for morning snack, 112 for lunch and 85 for afternoon snack. Hooray!

Then today, well actually last night, she was 92 at 11:00 p.m. My husband checked her at 2:00 a.m and she was 174. He didn't know she was 92 earlier, so he only did a partial correction. This morning she was 275. Hmmm. I pause, but figure since she didn't get the full correction last night, things might be OK, after all it is only day two of her infusion set. I correct and we head to school.

Morning snack 230, obviously not great, but lower than before. Lunch, 212, OK, lower and its a post morning snack number, but still not great. Afternoon snack, 427. So up to the school my hubby goes to give her a shot (we live a half block from school). She'll be home in 45 minutes, so we decided to wait on changing the infusion set.

Then I went to pick my girl up after school and her teacher was a basket case. She was SOOOO worried that she screwed up. She said, "I should have seen it coming."

I let her know in no uncertain terms that she cannot claim responsibility for my daughter's blood sugar numbers. It is her job to teach her, get to know her and keep and eye out for the symptoms we discussed for almost an hour and a half. I said that if she is worried at all, to ask my girl to take her blood sugar and to call me if there are issues. Her diabetes management is OUR responsibility and we will do our best to care for her with the information we are given each day.

Now, I should say that my daughter has been under the supervision of one Teacher's Assistant since she started Kinder at the school. It took some months of cajoling the administration, but everyone finally agreed that having one person watch over her care (we have no full-time nurse) was better than her, at five years-old, trying to figure out which of the five people at the school was supposed to help her three times per day.

This angel of a TA named Molly is loving and tender and watchful over my girl. She also cares for several children with Autism and Down Syndrome, but every single day at 9:00 a.m., 11:30 a.m. and 2:00 p.m. she is in the room watching blood sugars be taken, writing down the numbers, helping count and add total carbs, monitoring the pump entries and trouble shooting with me on the phone if there are issues or she just thinks my girl just looks a little off today.

Molly knows my child and loves her dearly and this system has worked great for us. I hate the idea of a teacher being responsible for teaching, managing nearly 20 kids and giving her full attention to my child's diabetes. I like the teacher being an active participant, but not the care provider. It works for us.

Tell me how your little one gets care while at school. What is your biggest worry? Do you trust the people/system caring from you child?

Three Years and Counting...

Today is the third anniversary of my daughter's diagnosis of type one diabetes.

I was at work when she called me to say that Daddy had checked her blood sugar; I could tell she had been crying. A wave of fear spread from the top of my head to the tips of my toes as I asked her, "What was it, baby?"

She was three, soon to be four and I knew in that moment that our lives were changed forever.