CGM in the Cloud & Now On My Watch!

People! It is here! I can see my child's blood sugar all the time!

The Nightscout Project, developed by a group of engineers and hackers with T1 or are parents of kids with Type 1 Diabetes created a way to plug a smartphone into the Dexcom receiver and have it upload to the cloud.

Now I have a website that I can keep up on my desktop, iPad, or phone that virtually mirrors my child's Dexcom readings and will alarm if my daughter is low or high.

I also can upload the info to the Pebble smartwatch, which is what you see on the left.

Now, I don't want you to think this is out of the box easy. I spent a lot of time reading posts on their CGM in the Cloud Facebook page, watched the instruction videos multiple times and spent about a week researching phones, cables and storage containers to carry the "rig."

But, it was easier than I expected. Every time I had a question, I posted on the Facebook group and got an answer, even after midnight.

At first I thought this might be a bit over the top for a teen starting high school. PERFECT for a toddler! But would she want me lurking on her like this, but after talking to her about it, we realized this could be hugely helpful. She is still a growing kid with a brain that is firing at a million times a minute. She is starting high school, in marching band, on the swim team and hardly ever is at home. So this is a win. Plus, she can view her on readings on her phone, which never leaves her hand.

The thought is that I am back up. If I see her numbers climbing sharply around 1:00 pm, I can text her, "Bolus?" to make sure she got insulin for lunch. She can then take care of it before the freight train of highs plague her all afternoon. Forgetting is a big teen problem.

So, here is a screenshot of the website on my ipad.

I'm not going to go into set up, because that is all online at Nightscout and Facebook. But here are the elements of what's needed:

• Smartphone that can take an OTG cable
• Specific cables for data transfer
• Dexcom (extra receiver helpful)
• Data plan for smartphone (most of us use Ting.com for about $9/ month and share referral codes that give us $$ credit when someone uses it)
• Optional Pebble watch, but not necessary.
• Time

What amazes me is that an engineer and dad like John Costik, one of several founders of the Nightscout Project, made this happen for his own son. He loved the Dexcom, but not having his sons numbers available at a glance was inspiration enough to make what is becoming a very helpful tool for hundreds of T1s or parents of T1s. Six Until Me did a great interview on the process that led to us all having access to this amazing info at our fingertips.

The philosophy behind making it available to all is simply, #WeAreNotWaiting.

#WeAreNotWaiting while our endocrinologist tries to assemble the disjointed pieces of the data puzzle.

#WeAreNotWaiting for competitors to cooperate.

#WeAreNotWaiting for regulators to regulate.

#WeAreNotWaiting for device manufacturers to innovate.

#WeAreNotWaiting for payers to pay.

#WeAreNotWaiting for peace of mind that our children with type 1 diabetes are safe.

#WeAreNotWaiting to get some decent sleep for the first time in years.

#WeAreNotWaiting for our child to be able to safely have a sleepover at friend’s house.

#WeAreNotWaiting to give our child a better chance to succeed at school.

#WeAreNotWaiting for others to decide if, when, and how we access and use data from our own bodies.

#WeAreNotWaiting to build applications that focus on design and usability.

#WeAreNotWaiting to compel device makers to publish their data protocols.

#WeAreNotWaiting to insist that patients have access to their own diabetes data.

#WeAreNotWaiting to allow PWDs to have a choice in how they see their own diabetes data, and not be forced to use substandard software delivered that comes with their device.

#WeAreNotWaiting to make it easier to get data off of devices.

#WeAreNotWaiting to bring together the best and brightest minds from around the world to help make things better for PWDs.

#WeAreNotWaiting for the cure.

T1 Traveler...I Had Issues: Part 1

Howdy all! I just got home from Nosara, Costa Rica with my family. It was an amazing trip, but can one ever travel so far from home without incident? Hell, no! One thing I am glad about is that it was me and not my daughter with the problems. I know myself and can judge from the inside what to do next.

So, I was prepared. Really prepared. Tons of supplies and insulin. Blood ketone meter. Lots of back up, so running out of stuff wasn't an issue.

Playa Pelada, Nosara, Costa Rica by Wendy L. Morgan 

My daughter loves to surf. This is partly why we chose our destination. I had to get it all on camera, so I also went out in the surf. We typically checked our BG before going in and typically took an hours worth of basal to carry us over.

One of those days, we had afternoon surf session and I guess I hadn't had much to eat at all that day. Couple corn tortillas and some avocado. It was hot and I wasn't hungry.

 My BG was 130 going into the water, so I didn't bolus any extra as I was worried I'd go low. By the time we got back to our room, I was feeling high and indeed I was about 300 and felt like I had ketones. I had moderate levels and felt pretty crappy for an hour or two. I got my BG down and realized that that was a pretty weird episode. I reviewed my day and wondered if my lack of food and seriously increased activity, along with a hour and a half of no insulin made my ketones spike.

Unfortunately, that wondering didn't stick. Three days later, we had a morning surf session and I did the same things. No bolus for basal. No breakfast. We were also out there longer than I planned.  Two hours later I stood on that beautiful beach wrapped in a towel and felt the ache of ketones spread across my chest, across my shoulders and into my back. I felt nauseous and my body felt sick. It came upon me incredibly fast!

We got back to the room and I began to drink a ton of water. This was hard and it felt very serious. I was in a tiny village in Costa Rica. I checked my BG and it was 250 with 1.2 blood ketones, so I book used. Then 20 minutes later I was 350 and at 1.9.

 I had piled a towel on the table in front of me to lay on because I was afraid to move.  I laid my head down between sips of water. I took a total of 15 units with three different injections, then worried I'd taken too much. I was worried I'd need an IV. I was worried. Period.

I drank and drank and tried to Google (we had wifi in our room) "DKA self care," and got results that indicated I could really be in trouble. That's when I began trying to reach a diabetes educator friend on Facebook messages.

 I typed by desperate plea for guidance and realized I was killing time. As I typed, I think I even wrote that I was waiting for the water and insulin to work and trying not to puke. I needed to be doing something to help myself, so writing to her was it.

She responded promptly! She asked if I had Zofran, the anti-nausea medication, and of course, I did! She suggested I take that to keep from throwing up all the water I'd drunk.

 By the time she responded everything was beginning to work, so I didn't taken the drug, but knowing I was doing everything right was a big relief. I asked her if I should take more insulin, but she said wait two hours and see where I am.

I trended slowly down over the next two hours and my ketones dropped to 0.2. This was great news, but that whole thing scared the holy crap out of me. Ketones from exercise, lack of food and no basal insulin, was new to me.

Most the websites I found during my Google-medical-care-abroad session talked about such basic stuff like don't exercise with high BG or ketones, but nothing described what I had just done to myself.

I ate a big lunch and loaded up for future trips to the water with plenty of food and insulin on board. Lesson learned 30 years into this pain in the ass disease!

Next post, my flight home! Diabetes adventure número dos!

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!

New Years Resolution Update: I Quit the Gym. Boy, I Feel Better.

Yeah, I went to the gym, inspired by my walk challenge, which has been, well, challenging. I actually hadn't been in awhile. They supposedly renovated the place and when I walked in I saw new paint and stuff moved around and a lot (whole lot) of people working out like drones in front of the TVs. I wanted to swim. My body was achy and I heard the pool area was new, but it didn't look new, save for paint.

Anyway, I loaded up my gear and went to the desk and told them I quit. Whew! I feel better. No more feeling bad for not going. Paying and not going. Spending 20 minutes to get ready to go. No 20 minutes to unpack and get dressed after going. No more feeling like crap when I look around at all the college students who look just like I did at 23, but I didn't have to work for it then.

So, I came home and pulled out my Mari Winsor Pilates DVDs from like 1995. The 20 minutes workout was scratched (my copout go to) and won't play, so I did the hour. I did it Sunday too and when a friend asked if I wanted to take a walk that day, I said, "sure!"

Yesterday, I did my video again and am already stronger. Interestingly, even after my first workout, I had to adjust my car rearview mirror because my back was straighter. That was actually at the top of my list of priorities, work on my posture. Pilates does that and I love that I workout laying down almost the whole time (or rolling like a ball).

The steps challenge to do 5,000 every day, well, that is hard. In fact, I am super impressed my doctor does 10,000 every day. On an average day of just taking care of the kid, working, coming home I average about 1,200 steps with no extra effort. Sunday, when I went for a long walk, I only managed to hit 4,750. That is my peak since my last post. The days I'm doing Pilates, I'm generally not walking. I take me stairs...going down, and am trying to get more steps in, but other than going on long walks (time), I don't know how you hit 5,000.

So, I'm adjusting my goals a bit. If I do Pilates, walking be damned. If I don't, I need to take the dog on a long stroll.

That's my plan. I just need to move and the Pilates is stretching me like I need, lengthening my muscles and not killing me yet. I do need to accept a couple of the more challenging moves in the video that I have skipped. I did two new ones yesterday and was surprised I could get my legs over my head so easily. Anyway, stay tuned.

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.

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.

Disorienting Low and a Car

I had a doozy of a low this week. It has been a LONG time since I got low and felt out of control. When I was younger I had some lows that had me begging for help or caused amnesia, but it really has been years. Now, I usually get low, feel it, drink a juice and move along or more often than not my CGM catches me as I fall.

This week I have been dropping a lot. Don't know why, hormones or absence of them, who knows, but Thursday my CGM was giving me alarms about predicted lows and I was in full work mode. Trying to solve a problem and I just wouldn't stop until I had it fixed. The CGM was reading 70 and I really should know better, that 70 probably means 50, but I didn't stop to take care of myself.

On a mission, I drove home from work to pick up my daughter from school, dropped her off at the house and headed to the computer store to buy a cable. I had a problem to solve and I needed that damn cable.

In the car, I felt so out of sorts. Despondent, anxious, weird, but not so obviously that I recognized what was happening. I had been having a hard week, really under pressure and I was thinking to myself that maybe this feeling I had was a new normal. That I'd feel this way forever. It was weird.

I got to the store and I asked if this cable would fix my issues and they showed me the package and pointed to the info I needed, but I couldn't read it or focus and just asked them to be sure this is what I needed.

I got home (THANK GOD), sat down at the table with my hubby, pulled out my blood sugar kit and I was 37. I looked at the meter and said, "Wow...37." My man got me a juice box and I drank it, but as I sat there I felt strongly that I was supposed to be doing something. I asked him, "Am I supposed to be dong anything?" He said, no. Quiet. I asked if he was sure and he replied yes. Quiet. I said, "I am just supposed to sit here?" He said yes and so I sat there, waiting for the juice to hit.

This is the first time I can remember since I was in my 20s that I was actually "disoriented." I really didn't have a clue what was going on. My CGM was still saying 70, so it was just a little off (HA!), but I somehow instinctively got out my kit.

I am so grateful for adrenaline when I was on the road. Without that, I could have met a very sad and disoriented end.

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.

Woke up thinking about diabetes complications at 3 a.m.

This morning I had a first; worry about the future impact of complications on my body. Perhaps it is the pending New Year and the resolutions that always hover. Perhaps it was my husband, who said that he is sick of sitting in front of the computer and wants to get moving. Perhaps it is the Wii Fit and the fun games that are making me think a lot more about my diabetes and my overall health.

I have three months left of my 39th year. I was in the bathroom this morning and wondered if I need a mammogram now. Making my poached egg, I scrapped off half the butter I was about to use.

I put my CGM on four days ago for the first time in months. I thought the transmitter was about to konk out on me when I had a couple iffy sensors and bad readings, so I tucked it away and feigned self-control by "knowing my body." I have to say though, my blood sugars are darned normal most the time and the CGM confirms this for me nicely.

So, in bed this morning around 3:00 a.m., I started thinking about how my body was aching; really in need of a massage (which I got for Christmas). My ankle was stiff and the more I twisted it and stretched it to try to loosen up, the more I realized I don't like to be in pain, or really even discomfort, AND I don't like taking pills to make me feel better. This led to thoughts about how I'm going to feel if I am in pain all the time because of complications. I actually thought. "I'm not sure if I could live with that." I thought, I hope I get killed by a bus or freak train collision rather than suffer as I get older.
Don't worry, I'm not imbalanced or depressed, but it made me think about how much control I take over my health and life. Where does diabetes care fit into my priorities. To be honest, not very high on the list. My health fits in right about where most people fit it in, between kids activities, work, doing dishes and beating myself up over the things I *should* be doing.

I don't spend an inordinate amount of time beating myself up; gave that up years ago, but I have slipped to the other side to virtual complacence. Don't think that is the best place to be either.

My daughter takes most of my energy, time and stamina. Her diabetes takes the rest. How do I teach a kid to make the right choices, when they aren't a priority for me?

So, the Wii Fit really kicks some butt. I ought do be doing yoga now, but I just wanted to start a dialog about reality, not fear. A little voice in me is saying that I should be more mindful, thoughtful about my choices. That self-care is a high priority, no matter my other obligations. I think the example of the oxygen mask on the airplane is perfect here. If I don't get air first, how can I help my child?

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!

Diabetes Rhythms--Do you go with the flow?

Curious thing. I have been doing a lot of work on self-care over the past year and have become very intrigued with how out of sync "we" have become with our bodies, with our minds and our emotional and spiritual needs. I work less and play more, but it is so easy to forget that we live in cycles; like the moon, the tides, the seasons, the climate...ah the climate. A perfect example of what happens when we ignore our inner rhythms or when we push for things to be the way we want them, despite what is actually good for us.

Mind, body and spirit are tied; our thoughts tend to be the leader, but sometimes body and spirit don't follow, because they know better! That is what happened when I quit my job as an executive director. My mind was on overload, my body was exhausted, but I kept pushing it anyway and my spirit was on vacation; but I had a job to do. One day, I changed my mind or my wisdom changed it for me. I heard my body's cries, my spirit raised the white flag and my mind finally yelled, "I QUIT."

I have spent a lot of time in my short life fighting what my body is telling me. In the past year I have learned that my body is a barometer to how thoughts make me feel. You know that "feeling in your chest?" It is telling you something; to take action or to stop acting. It is amazing when you listen to that feeling, you almost always end up on the right path.

Scott's recent blog got me really thinking about diabetes fatigue. We go through phases, yet we refuse to recognize that this is normal. We are in a constant state of judgement; we should be 'doing something" to fix ourselves. We should be taking better care of ourselves. We are constantly shoulding on ourselves.

Would we expect the tides to stay high, or the moon to stay full or for our periods to stop, just because we say so? How can we expect our emotional, physical and mental state to stay on an even keel all the time? It is impossible, but we "think" we can fight it, ourselves, our feelings.

The biggest gift I have learned is to recognize when I am at a low point; I'm blue, I'm tired, I don't really care about my blood sugars, and I am going to eat anything I want. In recognizing that I am there, I then give myself permission to ride it out, becuase this too shall pass. Doesn't it always?

If I start feeling bad (emotionally, physically or mentally), I say, "Hmmm. Self, your not feeling so good today. Your in a blue mood. That's OK." Seriously, I have to say this out loud to myself (although not in a crowded room). I have to remind myself that it is OK to be in this place.

What invariably happens is that the blueness doesn't hang around as long as it used to. I also recognize that I might need to do something nice for myself today, like take a walk with my dog, go swim or go buy ice cream or new shoes. I also may do nothing but lay in my hammock for thirty minutes.

I am more respectful of my physical, mental and emotional cycles and what I need to make it through every day. I still have bad days, but not so many very bad days. If I remember to listen to myself and honor the phase I am in, things iron themselves out more smoothly and more quickly.

Do you, like Scott, feel diabetes fatigue phases coming? How do you honor this phase? For instance, I quit taking my blood sugars (less an issue with the CGM, but I quit looking at the numbers), but I always make sure I check before bed or if I feel high or low. How do you go with the flow, but keep yourself safe?

Diabetes Camp for Kids--We are ALONE!

My daughter is not home. She is at Camp Sweeney in north Texas, close to the Oklahoma border. I was SO amazed at what a fabulous place this is and how many competent and extraordinarily friendly people were there waiting to greet us.

She is only staying for the Mini-Session which is Sunday through Friday morning, but for her first time, I think this will be perfect.

I feel so comfortable about the place that thinking about the possibility of her staying for the three week session next year amde my hubby and I giggle. We talked about hitting the Mexican Rivera for a week -- ALONE!

We haven't left our girl in any one's care for more than a sleepover and the idea of us getting some time alone is awesome. I just walked in the door from a very long drive, so I haven't had time to miss her yet, but I am so happy she is having fun and being cared for meticulously!

Minimed REAL-Time CGM Curses and Gratitudes--Part II

Having the Minimed Real-time CGM is a blessing, but it can be really annoying, too. I need to be frank and this may horrify some people, but I prefer NOT to deal with my diabetes. I am not motivated to take my blood sugars and I have a pretty good sense of my blood sugars without checking 4-10 times per day. I got the CGM because I thought it would lessen my resistance to diabetes self-care, but at times the thing just annoys me. I don’t WANT to look at my pump or hear that damned alarm. The alarms rarely warn me of problems, this is specifically BECAUSE I have the CGM and am in good control with its assistance, but the darned thing is always asking for something.

Yesterday, I left my blood sugar kit at home and missed a calibration for 5 hours. This means the alarm goes off what feels like every 10 minutes, but it may be 30, and I want to toss the thing out the window. Common sense says, “Just check your BS first thing in the morning and last thing at night, but I forget, so no logical solutions are necessary.

Then the sensor ends, which means stopping, starting the thing again and then calibrating again, then calibrating again in six hours and again before bed. Meanwhile, I get a low reservoir alarm and my battery is getting low and I just want the thing to quit beeping at me. Oh! I put my pump on the left and not the right side, so I also wrestle with “weak signal” alarms.

By the way the Navigator had a HUGE range for transmission--10 feet at minimum. I rarely had a weak signal and in fact left the receiver upstairs in my bathroom all the time and still tracked readings. I put the Minimed pump under my back while I’m sleeping and I get a “weak signal” alarm; THAT is ridiculous.

A friend who started the CGM with me just left the thing off for a week and that sounds good to me because all the blessing I have received are slightly shadowed by frequent alarms of one kind or another.

I am really just not as deeply committed to my diabetes care as I thought I “should be.” I want to reiterate that this CGM is a GIFT and one of the best diabetes technological advancements since insulin. Sometimes I just don’t want to think about it AND I know that if I don't, I won’t do any permanent damage.

Training Babysitters to Care for Kids with Diabetes

Tonight I did a workshop for a nanny/babysitting service in Austin so their nannies could help families with children with type one diabetes. It was about an hour an a half and I provided the basics about what diabetes is and we discussed what parents fear most in leaving their child. We covered a lot of basics of care like drawing insulin in syringes, giving shots to a stuffed practice tool, playing with my pump and I had each of them check my blood sugar. I brought six different kinds of meters, insulin pens, Glucagon, etc, so they were familiar with what they might find in a families home and I put together a 24-page handout with lots of details, should the get a client and need a refresher.

The women were fascinated. We even practiced counting carbs and there was a tray of fruit, cheese and crackers and I asked them which of the foods on the tray had carbs. They all agreed that the crackers and maybe the cheese had carbs, but they had no idea fruit was in that category; so we had the basics of nutrition talk.

One of the things I stressed was that their intuition was their best guide. If they think something isn’t right with the child, just check their blood sugar and find out. We talked a LOT about lows; what to look for, how to handle and what to do in an emergency.

I also stressed how important it is to CALL THE PARENTS if they don’t know what to do, or even if they need to know how many carbs are in a banana. I love getting calls from my sitter asking for clarification on something. It gives me a chance to praise her good decision making and also help them feel more comfortable about coming back for another sitting job.

I would love to know your stories around babysitting; what worries you most and what would give you more confidence about going on a date with your significant other. Having a child with diabetes can be so all consuming and we all need a break, so I am hoping a few more families living in Austin will get a chance to get out.


Photo by Tiffany Chapman http://www.freephotosbank.com/10489.html

So Frustrated My Throat Hurts from Screaming

I exploded with frustration last night when I realized I had left a brand new bottle of Novolog in Dallas. I was there caring for my family as my Mother-in-Law who was just diagnosed with malignancies on the left side of her brain. So, I was on day four of a bad cold, it was midnight last night and we just drove four hours with a six year-old, I was out of insulin, my battery was low and my blood sugars were above 200 all day, even with my alternate pattern—I was exhausted.

So, before I took care of the business at hand, I exploded. All I wanted was to get a good night sleep, something which has eluded me for days and here I was at midnight, changing infusion sets, batteries, draining the last drops from a bottle of insulin AND setting my alarm for 2:00 a.m. See, I took off the Minimed REAL-time sensor last night because I was getting “trained” today on how to use the thing. I thought I would just take it off and let the battery charge, which turned into another reason for me to scream. Bad idea—I now had a 2:00 a.m. wake up call to be sure I wasn’t low (or high).

So, I screamed at my husband--really loud. I screamed at him for leaving the insulin in Dallas (yea sure, it was his fault), I screamed at him for being lucky and not to have to deal with this crap all the time, and I screamed at him for many things that had NOTHING to do with anything. I totally lost it!

For four days, at the hospital in Dallas with family, friends, kids, I was the strong one; I took care of everyone and kept things positive despite the fact that doctors were doing brain surgery. I nurtured everyone, bought lunch, talked to church members, played with the kids and smiled warmly and confidently at mom as she rested in the ICU post op. I controlled of my daughters diabetes, in spite of the fact she probably didn’t consumed anything all weekend that grew from the ground. I took care of everyone, but me.

I got angrier than I have been in many, many months—maybe even a year. But today I hugged my husband very tightly, I took a handful of vitamins, drank two glasses of my favorite tea, watched a show I really like and am going to bed no later than 10:30 p.m. I need me right now and last night was a screaming wake up call to give myself a freakin’ break!

So, What Have You Done for YOU Lately?

It is a rainy day in Austin and everything is SO green. I love the rain, especially this time of year. It is days like this that make me all introspective, and I have a question for you.

When was the last time you did something nice for yourself?

We are all fabulous people and live with interesting and sometimes difficult circumstances, so do you ever take time to yourself—treat yourself to something special, just because you need it?


I have this beautiful Permission Granted box gifted to me by two friends that is filled with little bits of wisdom and invitations to do something nice for you. They say things like:

• Develop a collection of your own art supplies—and don’t let the kids use them
• Allow yourself to say NO!
• Visit a Farmer’s Market and treat yourself to your favorite fruit. Eat it on the front porch as soon as you get home
• Eat a dollop of cookie dough without feeling guilty (my FAV)
• Paint your toenails a vibrant color

This week, I stopped at my favorite Mediterranean grocery and bought a huge tub of tabouli, freshly made hummus and warm pita bread--right out of the oven. I LOVE tabouli, so I got in my car and made myself a huge pita filled with these amazing flavors. It was a mess! The explosion of lemon, parsley, onion and tomato is so intoxicating; It was a real treat for me.

"Self-care is not about self-indulgence, it is about self- preservation." ~ Audre Lord

Tell me, what have you done for you lately?