JDRF Walk to Cure Diabetes 2009

Tomorrow is the walk. My company supports JDRF as one of its four national sponsored charities (the others are Heart Association, HIV/AIDS and American Cancer Society.) It makes me so proud to be associated with this company. I was on the steering committee for activities surrounding this year's walk. Here in the Chicagoland area, it's called the Ron Santo Walk to Cure Diabetes. Ron Santo makes the rounds of the walk locations, health permitting. I hope we can see him tomorrow.

We'll be walking at the Libertyville location. It's not our regular site, but it's where my company has a tent and activities and such. It promises to be cool and possibly rainy. Fun, fun, fun. Plus we have to leave at 7 am to get to the walk site by 8. I am tired already.

But, this cause is a good one. On the way to the cure, JDRF invests in technologies to assist those managing this disease and while a cure may be a dream, a long way off, an artificial pancreas is in clinical trials.

We don't do active fundraising as a family, but this year through efforts at work, I have raised a nice sum. I will be happy to collect a t-shirt for Peony

dexcom 7 rocks!

so it has been way cool with the dexcom. ladybug said we should just give away our tvs and watch peony's blood sugars instead. after she was on line we had her jog a block and back and she dropped 40 points in three minutes! She is still having a hard time staying in range, the insulin isn't acting fast enough. but she's trying and that's what counts. also, her mood has so improved, I think she is the child i had pre dx. plus her school performance is awesome. all a's and one b+. her self esteem is much better and i can't believe it, but i have to give credit to this device.
more later.

The Dexcom Experiment

Success! At first, I thought I would have to lay on Peony to insert the transmitter. She was so anti-new device. My mean mother voice and attitude won the day although the insertion really hurt and I was reading eachh step as we went along which slowed things down. We were unable to have Dexcom training before vacation, so I just muscled it through. I wanted to start this new regime while I was with her 24/7 on vacation. After the two hour activation time, Peony was totally on board with this new toy. We named it Carl. Ladybug said we could throw out the TV and just watch Peony's blood sugars! We had her run a block and back and she dropped 40 points in 2 minutes! WOW. As the days went on we noticed a real sluggish insulin response. She would be high, maybe 350, and the pump would say she had maximum insulin on board, so she couldn't add more and it took a long time to come down. Her second night was awesome, all night in range.

We had an endo appointment immediately upon return from vacation. The Doctor was curious about the Dexcom and based on our observations we adjusted Peony's insulin to carb ratio to 1:5 from 1:6. She thinks this will speed up the insulin reaction time. It's amazing to make treatment decisions already from this new technology.

I am enthusiastic and excited about this new tool, but it is just a tool and I hope thirteenism doesn't get in the way when the newness wears off. We shall see.

More later.

Please comment

If you are reading here, please comment. I feel I am the tree falling in the forest. If I have followers, please let me know!

A Peaceful Time

Both girls have been empathetic and peaceful this week. It helps that we have a tv and laptop for each. We all miss RandMcNally who is at camp. We are all looking forward to our one week vacation a week from this Saturday. Even, I am too cool to be family oriented Hemingway is looking forward to our time as a little family. Diabetes seems ok, but we'll see when I download. I have been having a conversation with a Canadian mom of a gal just the same age as Peony at diagnosis and now. It has been a fabulous connection. She is setting up a business site for gals with caregivers and diabetes type 1. I am hesitantly willing to join her conversation, but what she is doing is great. The type 1 experience is so different for girls/women. I'd love to open this conversation. Fun times!

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Back in the Saddle Again

So, the girls came home on Wednesday, full of stories and enthusiasm. No diabetes issues for Peony. Wonderful. Thursday-Saturday were pretty normal, the girls were home alone during work days and on Saturday we went to the mall with my mom. I needed a shower present and ladybug and my mom and I went in search of Williams Sonoma (could buy the whole store!) and peony and her friend roamed. All good. Tonight, I came home from the shower to find a distressed Peony. Her rib hurt. I gave her an ace bandage type thing and some advil. I just went to ask her what she wanted for dinner and she is in bed with the blanket over her head. What is going on? I asked her to test, and she shouted! I am letting her stew but my heart is breaking. I want this to be eaiser.
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Girls Home Tomorrow!

Yay! It is way too quiet around here, just me and Hemingway and our laptops. I know the noise may be fighting with each other, but ... I can't wait for the hugs and the stories. The camp directors didn't really want her to leave, but in truth, she was hesitant to sign up for six weeks and I didn't really listen. When I was a camper, I loved going for the full session and Ladybug loved her full session experiences. I forgot to factor in the huge fact that everyone is different. Peony is much more connected to her pals at home.

In any event, I will be going to work early so I can leave early, arrive at the bus stop too early with butterflies! My mother loves to tell the story of waiting with open arms while my sister and I got off the bus, hugging new best friends and crying, totally avoiding her. This plays out for me every year! On the ride home and for the next year, they never stop talking about camp. It is a real financial stretch for me to provide this experience for my kids. (RandMcNally went to the boy's camp for three weeks for the first time this summer, he is just finishing week one.) I think it's just that valuable.

More later.

She wants to come home.

After the first two weeks at camp I got a letter from Peony saying she didn't want to stay for the last two week session (that's her fifth and sixth week). Her letter informed me that an email from me about how she should stay and have a great time wouldn't work. She also said she would save her babysitting money and pay me back for the fee. Her sister, ladybug, was coming for the next two week session, plus there would be many kids coming to start with the next two week session and stay one more for four weeks. I am optomistic she will bond with a four-weeker, but I really don't mind if she comes home. I serve on the advisory board for this camp that I attended in the late 60s early 70s, so I get some slack. I want to support her feelings but in these last weeks I have been writing letters and ignoring the issue. A week from today, ladybug comes home. If she does too, ok. we'll start the dexcom early and get her to her therapist. Maybe if I tell her that, she'll stay at camp!!!
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What Dx Means to Everyone

Diabetes is a big deal to the kid who has it and the parent who has to help, but what about everyone else?

Hemingway was oblivious. We had fun with him because all he could say was "there are no carbs in cheese!" I told him that could be the name of his book. The game changed when Robert, a friend of his in sophomore year was dx and had to quit cross country. When he slept over at our house, I don't think anyone appreciated me asking him to test before pancakes. But....

Ladybug and Peony are chalk and cheese. Two years apart and hormones! Great. But, whenever Peony needs diabetes help, Ladybug is right there. She knows how to count carbs and all the ratios. The empathy growth is amazing and may be quite worth the price.

RandMcNally is younger than Peony and I wonder if he remembers her before diabetes. In any event, he is quick to run for the juice and he has an understanding of the disease.

So, my bottom line is diabetes is rotten, but it engenders empathy in the family and that's not a bad thing.

More later.

Dexcom 7

My kids are covered by my exhusband's insurance, blue cross, blue shield illinois. They will not cover a continuous glucose monitor for anyone under age 27. (why?) I decided to make a request and play the claim out. My employer has an advocate for claims denial I thought would be helpful. In any event, they approved her!!!! The salesperson and I have no idea why, but'"we''re not going to question it. It is now sitting in my bedroom waiting for us to be trained. I hope to get trained so when we are on vacation and I am with Peony 24/7 we can get acclimated. I am optimistic, but I realize it is just a machine, and she has to buy in and thirteen ism gets in the way. I am so thankful for sixuntilme.com Kerri has given me a glide path. Wish us luck.
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Our Dx Story

Diagnosis stories seem to be a common conversation topic when people with diabetes meet. As a parent of a child with type 1, I consider it "our" story and now's a good time to share it here. A preface: there is a bit of my personal backstory that must be revealed here. I thought about avoiding its inclusion, but it may prove helpful to someone, so please forgive the TMI if it offends.

The first time my then-husband hit me, Hemingway was 18 months old and I was early pregnant with ladybug. As I waited for an apology, he said he'd do it again. And he did. Why I didn't leave then is a subject for another blog.

Fast forward to November 2002. Now I'm four kids strong. I offend, somehow, and he shoved me down the one-step into the family room. I hit a chair going down and I completely lost my breath. The kids were playing outside. I thought I was going to die and I realized he didn't care if the kids came in and found me dead on the floor. I began a heavy evaluation of what my life was and what I could expect my life to be.

Then, unexpectedly, my dad had triple by-pass surgery right around Christmas. Other than watching the kids so I could do my shifts to help my family, he ignored the whole event and even skipped Christmas dinner. I was chilled to realize that he wasn't willing to act the happy family act anymore. I knew he could easily cut me out too.

He continued to refuse to consider counselling and after one more episode in May, I found strength in grace, grew a backbone and told my dirty secret. Of course, my family was stunned and jumped in to help. I tearily visited my Pastor, who told me to focus on the vows I made at my children's baptisms and not fuss over the wedding vows. He could have taken a very different approach and I did meet some Catholic clergy who thought I should not have left. My Pastor did much to save my life. June, 2003, went to court and filed for and was granted an order of protection.

(An aside: this decision was incredibly difficult to me although now it seems a no-brainer. The drive to testify for the order of protection was going to be heavy. As I opened the car door, I saw that he had clipped his cigar in my driver's seat before leaving for work that morning. That typically mean gesture gave me new resolve.)

I told the kids and they cried. Hemingway said "I knew this has to happen, I just wish it didn't." We hide out at a hotel until his lawyer contacted mine. He challenged the order and to make a long story short, the woman judge vacated the order and ordered me to let him back in the house. "Mustn't have been so bad since you never called the police" she said. A discussion of calling the police to report an abusive fireman is for another blog. When I told the kids, Ladybug cried for 40 minutes sobbing "I thought you said the judge would do the right thing!" I wish the judge could have seen that.

So, we are all under one roof and surprisingly he expects reconciliation. He works 24 hours every third day, so I propose I am in charge of kids two days and he gets the third. The kids turn to me if I'm there so I begin leaving the house before dawn, working out, sitting at bookstores, crazy. We are working on a parenting agreement so I can leave the house with the kids. We attend court-ordered mediation and we spend the whole first session discussing why I ruined his family and refuse to reconcile. He still denies any abuse, verbal or physical. I empathise, I did change the ground rules of our marriage. But, there is no going back, no hope that he would or even could change.

Finally, we get a calendar he agrees on. At this point, I am so desperate to get out I concede most points to him. He counts days. He wants every Friday. Three out of four weekends. Mid-week sleep overs. OK, OK, OK. He says we have to live within 10 miles of our marital home (which will have to be sold). This is solely to avoid any chance I could move in with my parents. OK. It's not what I want, but I keep focused on what we need: to get out!

January, 2004 he agrees to sign off. My realtor brother immediately starts seriously looking for a rental. Long story short, we find one (very expensive), furnish it from pots and pans to matresses to sheets and towels. Everyone empties their basements of furniture. My siblings drop everything to help me move and make the transition as painless as possible for my kids. I am grateful for my family showing my little family how families work, in good times and bad.

(Aside: I had been a SAHM since 1991. I am so grateful for the generosity of my parents. Now I am really focused on attaining a degree of financial security such that I can be there for my kids, should they need it, like my mom and dad were there for me.)

So 2004 passes as we hammer out the money side of the marriage. The kids finish off the school year at their old schools. They see their dad constantly. They complain to their therapist (in front of me in a joint session) that they want more mom time. This is a big growth time for me. I had been really entwined with my kids. I know I needed to step back, but it was painful at the time. Also, he ramped up his verbal abuse of the kids by focusing on Peony, saying things like "you are most like me" "you'll never leave me" "you are the best kid" Even the other kids started to have Peony ask for stuff they wanted because "he always says yes to her!"

The end of the year approached and we negotiate a new calendar for 2005. I accepted it immediately as it was totally scaled back. Guess what? Having four kids every Friday when you have a new girlfriend isn't so much fun.

The kids are at new schools and making friends. Peony is having a hard time with third grade. She has a teacher on the verge of retirement who confesses she has a really immature class. I hire a nanny and prepare to go back to work. My job is a really cool story, but again not for this blog. I'm to start February 1, 2005. The idea of not having me at home is unsettling to all, especially Peony. The new visitation schedule starts and she really misses her dad. She asks me for more dad time and I encourage her to ask him and tell her I will always agree to more dad time. She is really, really sad. We talk about it and she has no idea how I can help. Her therapist is worried too. Then she starts wetting the bed. She's only 8, so I really think it's emotional and I feel really guilty.

January 24, 2005, we meet with the judge to sign off on the final divorce. He has "given" me more miles, so I will be able to move closer to my family. That night, God came to me and told me that it's not all about me and I should have Peony checked out physically. The next day, January 25, 2005 we were admitted to the hospital and started the wild ride that is life with diabetes.

Another aside: all my kids think of the 2004 house as the best one, with the best neighborhood, etc. What they don't realize is that what they really liked about that time was the peace. Outside of the toxic atmosphere of my marital house we were happier, kinder, more loving, more tolerant. Just better. Also in late January, 2005, Hemingway asked if we weren't close to our anniversary of moving there. I said I would have to check, and it was. He and Ladybug decreed we had to have a party with pizza and cake to celebrate. Words can't express how that made me feel.

Whew. Thanks for hanging in there.

More later.

The Threat Worked!

Alright! She tested and bolused properly for Tuesday through Friday. So she can go to camp, promising to do well. I believe she will since she usually doesn't let things down unless she's with me. I, perhaps wrongly, think that that's the sign she is well adjusted and knows I am here for her. She's afraid of her dad and certainly doesn't want trouble at camp. Now I have to step up preparation for camp. She's in charge of packing clothes and stuff. I handle diabetes supplies. Thank goodness for fed ex if she runs out. I generally send 3x what she'll need, so she's never had a problem. The issue is the increased activity level has her low regularly, so she tests every two hours. Last year, her pump got waterlogged, but we survived with needles and Animas customer service.
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Why?

A long-time lurker and sometime commentator around the OC, I take the plunge.

Late last summer, a routine quarterly endo visit revealed the first of a string of rising A1cs. At first I blamed it on the relaxed routine of summer and surmized the return to school routine would get us back on track. Not so. At one point during the next quarter, Peony complained about a funny numbness in her toes. I didn't put two and two together until the endo did. Scary. We left that visit energized to reverse the trend by going back to the basics and doing a better job of counting carbs. I got some push back for using "the book", but generally I thought we did well. Things did not improve at the next visit and in fact got worse. The pump and meter download showed she was high 70 percent of the time, low 20 percent of the time and in range 10 percent of the time. I gasped. The endo said "I know why" as she showed me the graph showing bolus amounts which flat-lined at 0. ZERO! No boluses for four and five days straight. She "forgot"!!! We left with her promise to do better. That brings us to eight weeks later, this Monday, June 15, 2009. The A1c is up and again no boluses. I lost it. Firmly explaining that this is not a matter of forgetting, it is a choice. I cried. She sat emotionless. I posted on Juvenation and was amazed to have multiple responses from women who quit bolusing at 13 or later. There is a need for conversation and advice and thus, this blog.
More later.

So, now we are at Wednesday. My family routine is that I get home from work and make four plates of dinner. I know, family dinner and all, but we only have family dinner Friday, Saturday and Sunday. Other days, everyone eats when they come in and micro my plate. The last two days, Peony's dinner was uneaten when I came down to the kitchen to go to work.

Today, I asked her how her numbers were and she says 22os.

I told her Tuesday that I will download everything on Saturday and if she isn't testing and bolusing properly, she will not go to camp on Monday. It's not a diabetes camp, it's an all around girl camp with horsebackriding, waterskiing, archery, pottery,etc, and she loves it.

we will see. I mean it.

More later.

The Cast of Characters

Anonlurkermom is me. I remain anonymous, but no longer lurk.

Hemingway, my 17-year old high school senior number one son.

Ladybug, my 15-year old high school sophomore daughter.

Peony, my 13-year old eighth grade daughter, the star of this blog.

RandMcNally, my 10-year old fifth grade son.