Breakthrough

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We have decided to get pregnant, I've been logging my food and exercise religiously, I have given up beer, reviewed food logs with the dietitian numerous times, attended a CGMS class and had two hemoglobin A1C's of 7.0 in a row. ugh. I confided in my endocrinologist that I need more support. I need to be held accountable. Can I email her my logs weekly? Can she log into Carelink? She can, of course, for a fee that insurance doesn't cover. And I have my husband for support, don't I? (Who is qualified to review my sugars how? I mean, he is qualified in many things, but not type 1 diabetes management.) My endo does not have a CDE, nor a RN or APN, and basically no referrals for help. 

We decided it was time to go to the Maternal/Fetal High Risk OB clinic. We scheduled a consult appointment on Friday morning which are the "diabetic days" and showed up with a list of questions. They are incredible! In our 1.5 hour consult, we met with a Maternal Fetal RN, who gave me no less than 5 ways to contact her 24 hours a day. We met with a Maternal Fetal MD, who answered all of our questions thoroughly and didn't seem like he was trying to get out of the room. We also met an endocrinologist who does nothing but Type 1 pregnancies and an APN who wants to log into my Carelink data and wants me to send her my sugars, food and exercise logs via email to review every 3-4 days with NO FEE. And she doesn't expect me back until I am pregnant. Which means that she is willing to work with me for a month or two or three or six with no obligatory face-to-face appointments.

I was told that if I do everything right and my pregnancy doesn't go perfectly as planned, it is NOT my fault. I was also told that there is no reason that I can't have a vaginal birth if everything is going well. Or in other words, they are not mandating that I have a cesarian at week 38 because I am a Type 1. (Huge sigh of relief) I have been given renewed hope just at the moment that I was beginning to think it was impossible. 

104

189

As my husband and I are watching television the other night, an advertisement for a glucose monitor appears during the break and it is displaying a blood sugar of 104. My husband asks, "Why do they always display 104?"

And then we laugh. Giant belly laughs.

Cycling Ups and Downs

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My husband and I are training for Ragbrai, a bicycle ride across Iowa. It is not a race, but a ride. It starts on the western edge of Iowa where bikers dip their back tires into the Missouri River and then ride for 7 days averaging 65 miles a day until they can dip their front tires into the great Mississippi river on the eastern edge of Iowa. This ride is well-known throughout my home state and each town is welcoming only in the way that Iowa can be. Alongside the paved road, you can count on a farmer offering you fruits from his field at his roadside stand. He will be dressed in overalls and wearing a John Deer cap to protect his eyes from the sun. He will hand you corn on the cob from his rough and weathered hands. He will not ask for payment, because he will be so proud of what he has grown. I am looking forward to this ride, because I will get to experience so many things I experienced growing up, I will get to ride with friends and family, and I will get to eat sweet corn for 7 days straight.

As you can imagine, it is going to be a challenge to manage my sugars for the week. Which is why we decided to ride 60 miles yesterday to prepare. We have done plenty of 20, 30, and 40 miles rides, but have yet to reach 60. We decided to ride up the Green Bay Trail which runs along the metra tracks from Evanston all the way up to the border of Wisconsin. The day started out well; we arose early and I was at 129. I lowered my temp basal to 50% for 4 hours at 6:45am in preparation for the day. At 7:00am, I ate a breakfast of oatmeal, milk and blueberries. I bolused for the oatmeal and milk. At 7:25, we started off and by 7:45 the cgms was reading 189 with two up arrows. A few minutes later 209 and still climbing. WTF! I was so angry. I didn't want to bolus, because I was cycling all day and didn't want to bottom out. Why was it going up? Jeez! I'm riding my bike, it should be going down. Of course, a half hour later those arrows flipped 180 degrees and my blood sugar came flying down to 139 with down arrows at which point I started gulping gatorade. This was not how I wanted to start the day. Why did that happen? Did I over do it? Perhaps lowering my basal was enough for the beginning of the ride and I should have taken my complete bolus for breakfast.

We continued on mile after mile along the trail and my blood sugar had stabilized and remained steady. We stopped for lunch and then decided to ride home, about 17 miles. A half hour into the ride back, I was at 71, so I gulped some gatorade. That seemed to have no effect, so I drank some more. I continued drinking the entire hour and half back home until I had emptied the large bottle (almost 60carb), only to end up at 60. Once again, I was frustrated. Why did I get so low now? Well, remember when I set my temp basal for 4 hours? This ride took 6 hrs and the last two I was riding at 100% of my basal rate. ugh. Can I have a chocolate chip cookie now? I think I earned it.

CGMS Class

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As recommended by Dr. B, I signed up for a CGMS class. I have been wearing the minimed sensor for about 5 months now, but she thought I could use a refresher. She had also referred to a study during my last appointment from The New England Journal of Medicine that concluded, “continuous glucose monitoring improves glycated hemoglobin [HbA1c] levels and may enhance the management of Type 1 diabetes in adults who have the motivation to use this technology and the capability to incorporate it into their own daily diabetes management.” Thus, the better you know how to use CGMS, the better results you will have. As with many things in life, right? When I wanted to learn how to surf, it took me two months of paddling out, catching a wave and then crashing before I decided to take a lesson. As soon as I took a lesson, I could ride a wave. Anyways, I agreed, I could learn more about the CMGS. It turns out that the others registered for the class had canceled, so it was just me and the CDE. We downloaded my results from the last two weeks and looked at the reports. He applauded the relatively flat lines in the results which I accepted with a big, huge smile. I always like to be recognized for the hard work I put into living. We all need some validation, right? We continued on and I asked many questions and left with some good advice. I had learned:

1. I need to start my temp basal about 30 minutes before exercise instead at the start of exercise.
2. Temp basal should be closer to 50%, not 10%, (which I was doing) to avoid a high later.
3. Perhaps bolusing 10 minutes before I eat would flatten out that little rise I was seeing after meals.
4. I need to enter all carbs eaten into my pump for a better recording. When I am low, I typically don't enter the carbs I eat, because I am not bolusing, so why do it? Well, if I enter them, it's easier to figure things out when looking at the reports.

So, all in all, I was happy with my class and feel as if I have some new tools to manage things with.

Alcohol. Beer that is.

62

I think I am going to have to give up beer and I'm having a hard time coming to terms with it. It's not as if I drink it everyday or even every other day, it's occasionally, usually while socializing and always in the summer. It's one of those nice pairs that you only get in certain seasons living in the midwest. Late september & apple picking. Early June & camping. Sweet corn & watermelon. Grilling out & cold beer. I like to drink wine in the winter while curled up inside under a blanket reading a book and beer in the summer while grilling out and playing beach volleyball. So this is why I'm having a hard time realizing that I might not be able to drink beer this summer, I associate with so many fun, social events.

Since having the cgms, I have noticed that beer (even one) spikes my blood sugar instantly. If I even look at a bottle of ice cold beer, the little arrows on my pump start pointing up. After it has shot up to 250, then I come crashing down later into a full on low. I've tried various things, like drinking a beer with food, but it has the same effect. I've tried bolusing for the carbs in the beer and then eating a snack later to avoid the low, but I still end up low. It's what I call a double-low. I can't seem to find a solution for this rapid rise and then sudden free fall. Thus, the solution: no beer. I guess it's good prepatory work for being pregnant if nothing else.

Am I the last one to know?

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I am trying to start a social/support group in the city of Chicago for young adults with Type 1 diabetes and this week was the second of 2 meetings that I have had thus far. Only one person showed up to the coffee house where we have decided to meet. He was a 21 year old diabetic and proved it upon arriving, he took out his meter and checked his blood sugar and then showed my husband and I. "I know you were wondering." he said. And I WAS. I have to admit that it was comforting to see someone else take their blood sugar for a change. It turns out that even though this guy did not use an insulin pump nor a cgms, he had a plethora of information about both of them. I consider myself quite knowledgeable in pumping and cgms-ing, but we can all learn something new sometimes. Which brings me to the purpose of this post, he informed me that I didn't actually have to change my sensor site every 3 days, but instead I could remove sensor when it alarmed SENSOR DONE, re-charge, reconnect and go for another 3 days! How did I not know this? I had been complaining about the idiosyncrasies of the cgms and mine had recently had a lot of errors causing me to change it every 2 or 3 days and I was getting tired of it. It has been life changing advice and I am much happier now that I am not inserting a needle every other day. YAY for advice from other diabetics! I love you guys.

Meal Supplements

60

I set up an appointment with a Certified Diabetic Educator/Dietitian who I have never met before. While in her office, we take a look at my diet and she makes some suggestions. Eat more protein. Less Carbs. Lots of veggies. The usual. And then she suggests the dreaded meal replacements. I hate frozen meals and breakfast shakes. It takes all the fun out of cooking and eating, both of which I enjoy immensely. I immediately defer. But she continues on, explaining that yes, there are some organic options, and the advantage is that you don’t have to count carbs, because they are already listed for you. Just add a fruit or veggie and you have a meal. You don’t have to eat these all of the time, just one meal every other day or so. It helps with portion control too. If you could loose 5lbs, not that you need to, but if you could, your insulin requirement would go down and we would be treating your diabetes with lifestyle, not meds (insulin). Bang! She got it. She reeled me in. Anytime that you tell me that there is an alternative to taking meds, I go for it. And she reiterated this fact that I have heard a million times, but this time I really heard it. So I went to the grocery store and bought frozen meals. Kashi and Amy’s organic. My plan is that I will take them for lunch, sometimes. And focus on the more protein, less carbs, more vegtables thing. This is my start to lowering my A1C.

The Greatest Idea Ever

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My husband has been trying to learn how to count carbs and calculate the bolus that I need to give myself for a meal. It's hard. Do you remember learning for the first time? I carried a very colorful paper book around with me at the school cafeteria that explained the exchange system. I would open it next to my cafeteria tray and try to match up the type and amount of food I had on my plate. It was less than ideal. Now, of course, it is much easier. The amount of carbohydrates for a 1/2c of hummus, for example, is ingrained in my brain along with a cup of low fat milk or 8oz of organic yogurt. My husband is trying to learn it and I love him for that.

The Setting: Bar on Buena (a bar/restaurant)

Husband: You are eating a salad, no so carbs right?

Wife: Sort of. There is roughly 2 oz of almond crusted tuna on top.

Husband: Right. So how many carbs would that be?

Wife: I don’t know. There are also cranberries, but I’m not sure how many.
Husband: (logical) okay, lets count the cranberries.

Wife: really? There are black olives, cherry tomatoes and croutons; do you want to count them too?

Husband: Don’t they have an insulin pump with a camera? One that you would hold up to your plate of food,
snap a picture, and whola! It calculates the carbs, transmits to pump, boluses, done.

Wife: That would be the best invention ever; do you think Brandon (our tech savy brother-in-law) could make us one?

Less Than Six Percent Part II

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It turns out that Dr. B was correct or at least fairly accurate. Unknown to me, apparently it IS possible to lower your A1C to 6.0%.

As most of you may or may not know, there are an inadequate amount of resources out there for adults with Type 1 diabetes and even less for those that want to get pregnant. There are a TON of information and resources for children with Type 1 and their parents, those with gestational diabetes and Type 2 diabetics, who seem to be getting all the press lately. (Good and bad. We'll talk about press coverage later.) The JDRF has recently recognized the lack of information for adults with Type 1 and created the Adult Toolkit for Type 1 Diabetes which dispels a lot of myths that I have heard over the years. It's a great start, but it's just a PDF, and only includes one paragraph about pregnancy for those with pre-existing Type 1 diabetes. I don't know about you, but I can't find much support from a PDF for my most recent low. Furthermore, there is an outdated, terse what to expect book that is written by the American Diabetes Association (ADA) that is of no help to someone who actually has diabetes. And a few other texts that look at it from the medical perspective. That's sums it up. Not much, heh?

So where did I find out that is IS possible to have an A1C of 6.0%? The evidence exists in the many blogs that Type 1 diabetic women have written and I’ve just recently discovered. This is where the real info is people! Blogs! Real woman. Real success stories. How to do it, how to succeed and how to stay sane. Two of my favorites are Six Until Me and Managing the Sweetness Within. The woman responsible for the latter has also just published a book. This is where the ominous clouds break open to let the sun shine while a chorus of angels sing : Balancing Pregnancy with Pre-existing Diabetes: Healthy Mom, Happy Baby This book is amazing. A must read for any Type 1 diabetic woman that seeks to become pregnant. Written by a Type 1 mom, she chronicles real women’s stories, including the effort, the fear, the success, the worry, the SUCCESS, and the many other questions that come along with being a Type 1 while preparing for and becoming pregnant. It is also supplemented by scientific facts and advice by experts in the field of endocrinology. It is a must read for any Type 1 who is thinking of getting pregnant. It has made me realize that it IS actually possible to lower my AIC and I needed that proof. I have found the most support and information in this book and blogs. Which of course, has inspired me to blog.