Began writing this blog
Began writing this blog
me: I have a complaint from a type 1, I'm getting low too often and as a result, fat, I've gained five pounds from all of the sugar I've been consuming, can we do something about that?
doc: yes, I agree you have been low often, let's adjust XYZ.
me: (whew! I didn't have to argue) thanks
doc: You know, your doing a stellar job! Just look at these numbers, this is so great, you should be so proud of yourself.
me: silence. um, thanks.
As I tried to remember if a doctor had ever told me that I did a good job, I felt all of those endorphins rush to my brain and put me in a state of pure bliss. I felt so damn good for days.
Let's give it up for the doc who realizes what a little encouragement can do for the mental and physical health of her patients!
In the last few years I have eaten real butter. Do you know what real butter tastes like? It's AHHH....MAAA...ZING. I snack on nuts sometimes, mostly almonds. I eat sausage, bacon and steak. I eat eggs, yolk included. I eat things on the top of the pyramid. If you go on the ADA's website and search for the food pyramid you will find a short blurb stating that it is no longer in use as a meal planning tool. I find this disturbing, not only because I followed medical advice that didn't put me at an advantage against this disease, but because I don't know what kind of advice I am following now or in the future that could be detrimental to my health. So I have adopted my own philosophy for food, it's not original, but that its something I can live with, enjoy and feel confident that I'm supporting my body. I stay away from processed food, such as sugar-free cookies. What are those things made of anyways? I shop at farmer's markets in season and buy organically when I can. I focus on lots of fruits, vegetables and protein. I limit carbs, I don't avoid them. I've decided that eating real food, fat or no fat, is better than eating something that has been synthetically produced. People need fat. Even diabetics. If complimented with exercise, fat is your friend. It should be enjoyed.
My fat-loving ways were recently validated by my new endocrinologist. She suggested that I drink whole milk instead of 2% with my morning oatmeal or eat eggs every morning to decrease post prandial spikes. Drink whole milk? I gasped. And then I said, I like you.
-Being scared, but not sure what I was scared of.
-My mother stepping into the hallway to call my father.
-The autumn plant my stepmother brought to my hospital room.
-My brother visiting.
-Playing with plastic food to get an idea of how exchanges worked.
-Tiger, the stuffed animal, my stepfather brought me. (It's still in my bed.)
-Being embarrassed and not wanting to tell any of my friends.
-My mother sleeping on the couch.
-Getting released for a night, only to end up back in the hospital, because I was scared.
-My father, quiet.
-Holding a needle in front of my pinched stomach for hours trying to give myself the first injection.
-Giving the orange an injection instead.
-My aunt Karen, dressed in purple.
-Get Well cards from kids at school.
-Calling a friend to tell them about my new life.
-Morning snack. Half of a banana and vanilla wafers. I always wondered who got to eat the other half.
-My exchange book.
-Wanting to do a good job.
OR, I could have a glass of red wine. I could easily walk from my living room to kitchen, without pants, and pour myself a glass of pinot. I could let my mind disappear in the rivulets running down the glass. My body and mind would relax and I would be content. I could eat a pasta dinner and still be rewarded with an ideal blood sugar. Tonight I have chosen the glass of pinot. So why does it feel so wrong?
1. First, I admitted that I needed help. I needed frequent blood sugar review and support from my medical team. I also needed emotional support from those that know what a low blood sugar feels like.
2. I very proudly proclaimed #1 to my endocrinologist and when she did not respond, I went shopping for a new endocrinologist.
3. We sought out a Maternal Fetal High Risk clinic to chat about all of the risks and benefits involved in being pregnant as a Type 1.
4. The result of #2 and #3 were that my new endo and my new high risk APN both wanted to review my sugars weekly via carelink and email. A...MA...ZING! I actually had to choose which one I wanted to review my life.
5. I told myself I had to be completely honest with myself and all medical persons involved. Thus when I had a near perfect week of blood sugars with the exception of one spike into the 300's I explained, "Margarita" Take it or leave it.
6. I became willing to try new things and trust my health care team, which I haven't always done.
7. With some prompting, I became friends with the dual-wave and discovered that I can actually eat pizza. (I had been avoiding pizza for the last 14 years.)
8. My husband and I (mostly him) began a monthly meet up for T1's in the Chicago area Young and Type 1, I became a part of the DOC and I started this blog.
9. I have to exercise consistently. If I go one week without any exercise, sugars start to rise. Long walks. Yoga. Biking. Pilates. Anything will work. Just MOVE your booty!
10. Reluctantly I began bolusing 15 minutes prior to meals (I find it really inconvenient) No more post prandial spikes. No double up arrows on the cgms. No stress after meals.
As a result of these 10 changes, #4 and #8 have been the most significant. To be able to have a physician and an APN that actively participate in my effort to lower my A1C and care about ME has not only given me confidence to try new things, it has inspired me to try harder. Along with my health care team, I have met so many Type 1's from being a part of the DOC and this blog. I have learned from you and have been comforted by you. I can now speak about what is like to live with diabetes, instead of what diabetes is.
Gazpacho. Refreshing and cool in the heat of the summer. My favorite thing about this recipe is that all ingredients can come from your local farmers market. tomato, cucumber, onion, parsley, garilc, jalapeno (if your spicy). Put it all in a blender and presto! It's done.
There are also some desserts that I am reconsidering. Pie is an example. I have politely refused pie for many years now, so much so, that I had convinced myself that I didn't like pie. It was not a difficult refusal. Would you like some peach pie? No thanks. However, after riding my bicycle across the state of Iowa and being lured by roadside signs such as Grandma's Homemade Pies- 5 miles, I think I might love pie. Grandma Sue's homemade dutch apple. Mama's homemade peach. What was once not worthy of a bolus, has now become the dessert that makes my mouth water. Pies made by grandma-Bolus Deserving.
At one of our first meet ups for Young and Type 1, I was introduced to Jacob, a 21 year old male with T1. He sat down on the sofa with his coffee, introduced himself and proclaimed, to prove to all of you that I am diabetic, I'm going to measure my glucose right now. He then proceeded to whip his meter out of his backpack and take his blood sugar. Since you are all wondering what it is I'll show you. He then flipped around his meter and to reveal his result of 96. And thing is, we did want to know. Badly. We all wanted to know.
So what does Hemoglobin A1c really mean for us diabetics?
This is THE number that determines whether we are in control or out of control. It is the primary tool we have to measure our success or failure. It is the number that every physician wants to know. It is the number we measure ourselves by or try not to measure ourselves by. It is the number no one wants to reveal. It is the number we feel self-conscious about and the number we strive to have lower and lower. It is the number we celebrate and the number that can cause tears. If you want to become pregnant, like myself, it is the bane of your existence for months. It determines whether or not your womb is safe to be occupied. Everything weighs on this number. Which is why I am happy to report most recent result of 6.0% that I thought was impossible to achieve.
Yet, does everything really weigh on this number? My current targets are 70-100 before meals, 140 one hour post meal, 120 two hours post meal. That's a narrow range I have to keep. If I am able to maintain these targets consistently, my average would be 105 which is the equivalent of an HA1c of 5.3%. However if I maintain a range of 30-180, my average is also 105 or 5.3%. The latter is not necessarily a place I want to be in, yet would I be satisfied with a number of 5.3% even if I was bouncing from 30 to 180 each day? While I strive to have my number lower and lower and wait in anticipation for each result, I try to remember that this number is not flawless. It is simple math, an AVERAGE, which might not always tell the whole story. It is not the bane of my existence nor the sole measure of how well I am managing my diabetes. Nonetheless, with my number of 6.0%, I've been cleared to put a bun in the oven and it's not going to get burnt. I feel good about that.
I should tell you that a margarita is not a normal drink for me, so I wasn't sure how to handle it. So I guessed. I bolused 1.5 units, probably a little on the low side, but a double-header on the beach was immediately to follow so I thought I would need the extra sugar. After 45 minutes and chips with guacamole the cacophony began. Beep. 185 and upwards. Crap. I hopped on my bike before I could be convinced of another margarita and rode to the beach. Beep. Vibrate. 256. The first game didn't go so well. Lucky for me, my partner had also consumed a glass of wine before game time, so we were both a little sluggish and slow on our feet. By the end of the match I had come down to 114 and felt much better. I drank some Gatorade and played another match. Beep. 139. I cycled 6 miles to my house. Vibrations. 67. I ate an ice cream sandwich and snuggled up in bed to read a book. By midnight, I was hearing that high-pitched shrilled, the last resort one, when you've missed all of the vibrations because you are SLEEPING. Beeeeeeeep(high-pitched and shrill-like) 59. ugh. I desperately wanted to go back to sleep, but decided against it and went to the kitchen for M&Ms. At 2am, beep. 56. To the kitchen I stumble! At 4am, vibrate. METER BG NOW. Are you kidding? 104. Sigh of relief. When 5am hit and I was 59 again I started to complain while half asleep. Why didn't I just bring the giant bag of M&M's with me to bed? After the third time of going to the kitchen last night, I was delirious and mumbling about having poor dental hygiene from all of the sugar consumed. My husband seemed concerned and all I could utter from my subconscious was, Typical Type 1 doesn't brush her teeth in the middle of the night.
I have this fantasy. I am pregnant, diabetic and visiting this clinic every other Friday to make sure that the growing fetus is not living in a toxic environment. I see myself in the small-ish waiting room. The walls are painted a sterile white and there are paintings with calming colors. On the tables, magazines are stacked with covers featuring healthy babies. A mother is holding her shapely child above her head and there is a lovely park in the background. She is happy with her healthy baby. There are only women in this waiting room. Pregnant women with little bumps and swelling bellies. Type 1 women with insulin pumps attached to their hips. Because it is Diabetic Friday. I strike up a conversation with them and we find out that we have everything in common. We are all pregnant AND diabetic. We see each other every two weeks in this waiting room. Five of us become friends. We have fancy lunches in downtown Chicago when the drone of non-stress tests, ultrasounds and tweaking of basal rates are finished. We order our mid-day meal. Could I have 1 cup of a tasty low-sodium, vegetable soup with extra vegetables. Two ounces of lean protein. A slice of whole wheat bread, preferably with a low glycemic index. And a non-alcoholic, sugar free margarita please. We discuss our latest A1C's, how much our insulin requirements have increased, what doctor we saw that day and what he told me that was different from you. We discuss how often and when the fetus is kicking, how our husbands are talking to our bellies and whether or not we will return to work. We discuss the nurses we LOVE and the one's who drive us crazy. We lament about our challenges and celebrate our triumphs.
If you think I sound skeptical, I am. I was surprised when my endo started recommending that I take 1000mg of vitamin D daily and then followed up to make sure I was taking it. I was also surprised that she ordered labs to confirm. The explanation for this unexpected inclusion into my daily routine was brief. There was this study. You should take vitamin D. It's good for you. You probably don't get enough sun. What? We had never discussed my sun exposure while determining basal rates.
While I respect and trust my endocrinologist and appreciate that she is keeping current with science, I just don't think that vitamin D is really going to decrease the likelihood of complications or delay the onset of diabetes for those of you that don't have it. If I have an A1C of 13.1% and take vitamin D daily, will I decrease the chances of kidney failure? probably not. I don't mean to sound all pessimistic. I'm not saying that's its a BAD thing to take some extra Vitamin D with breakfast. I like a more realistic approach, such as this. I just think that this is a simple solution for such a complicated disease.
For the record: I'm taking vitamin D daily and I top off my oatmeal with cinnamon each morning.
A word to all of you: remove sensor when going to the water park.
The 50:50 did not work, so now we are trying 40:60 which seemed to work initially, except that for the past two evenings I have ended up with blood sugars in the 200's at 3 hours. I was even so enthusiastic about it being successful initially that I suggested trying the dual wave at breakfast and lunch as well to decrease post prandial spikes. This Tuesday I did 60:40 over 2 hours at breakfast and lunch and got spikes up to 180 at 2 hours post meal. Wednesday I did the same 60:40 over 2 hours at breakfast and lunch and no spike. Today I got a spike at breakfast, none at lunch.
I am both discouraged and encouraged by the dual wave results that I am getting. When it works, I am thrilled. When it doesn't work, I am overwhelmed by the numerous options in which it might work. Which ratio should I choose for each meal? Let's try breakfast. 60% first or 60% over 2 hours? or should it be 3 hrs? Or should I try 40% first over 3 hrs? or maybe only 2 hours? Or should I just go back to 50:50 over 1 hour? Or is it the type of carbs I'm eating. Should I add more protein? And then there's lunch and dinner to think about and it starts all over again. There are so many options and I am so anxious to get it right that if I think about it all at once I want to give up. One can drive themself mad. I just need to find the balance as Kims says.
I've been dying to let you know that for one week I got a break from this thing that we never get a break from. I was able to eat sugar, lots of it, and not bolus or worry about it. During the days of bicycling, I was on a diet of sugar and protein and I was thrilled. My plan was to eat a little bit in each small town throughout the day instead of entire meals. I would eat a banana for breakfast, ride to small town in Iowa, eat a hamball that was 50% brown sugar, ride to next small town, eat a bratwurst and an ice cream cone, ride to next small town. Wait. Is that homemade peach pie on the side of the road? I have to have me some of that pie!
The crazy thing to me, is that this worked! I lowered my temp basal to 50% and ate small amounts of sugar and protein as needed to get me through the next hour or two until there was more food. I did not bolus all day and my cgms remained a flat line!
There was a girl in high school who I played basketball with, but we were teenagers and had adolescent insecurities to deal with, not diabetes. Then there was a girl in my dorm in college, whom I never really connected with and have since lost contact. Last year, I met a guy in a cooking class my husband got for me, who I identified with in so many ways it was creepy. We had similar life paths, but he was leaving for Honduras in a week, so the friendship that could have ensued, ended before it began. Most recently there was the nurse in the ER who stitched my finger that I sliced while chopping squash. She had had two children successfully and my husband and talked to her for an unknown amount of time at the midnight hour while she neglected her other duties. She lives in Ann Arbor, Michigan, we live in Chicago, IL. That sums it up. Four type 1's in 14 years. Which brings me to the point of this post. After the ER visit my husband initiated a support/social group for Type 1's in the Chicago area and it has gained a few members. We met up tonight and my spirits are high. It's comforting to know that there are others out there that are living life just like me.
If your in Chicago, come hang out with us on the first Wednesday of the month! We are Young & Type 1. We meet at the Dollop Cafe in Uptown. It is GOOD.
Why I dislike being high: I find the physical symptoms of being high to be much more tolerable. I tend to get tired and thirsty. That's about it. However, the emotional symptoms are daunting. At this point I start to worry and anxiety sets in. I get nervous about the damage that a high blood sugar is causing to my body. I start to think about loosing feeling in one of my feet or having to go on dialysis. I envision clogged arteries and spastic nerve endings or a cluster of blood vessels in the back of my eye. If it continues throughout the day, all of these thoughts are exacerbated and the anxiety increases. And once again, guilt sets in.
I guess if I have to answer the question, I would say having a high blood sugar is worse. While it doesn't feel as bad, it has a lot of consequences later in life to worry about. And since I'm working on getting pregnant, a high blood sugar while carrying a child is a more serious thing, it's more damaging to the fetus, since glucose can cross the placenta. It will definitely be a worry. While a low blood sugar can have consequences, such as passing out or eventually loosing sensitivity to lows, I seem to worry about that less. I sit down and eat M&M's. I like that part. Eating chocolate, that is.
Family of Thieves: Consistenting of little boy, father and mother
Stretch of broken sidewalk which borders a hectic 12 lane street that wraps around the city named Avenida de Libertador. This particular block of Libertador is probably 200 yards long as it stretches past two polo fields. It is a moderatly busy sidewalk which is occupied by street vendors who sell sandwhiches to cabbies on break. At the time of the crime there was a military exposition taking place in the polo fields.
Insulin cord which is attached to Abbey’s beautiful tummy
Bag of groceries
Many, many automobiles
3:30 in the afternoon
What were you doing in the moments leading up to the crime?
Well, I had just gone to Jumbo (a major grocery store) to buy Mexican food for taco night and I was walking back home along Avenida de Libertador. I was staring at the military equipment they had sprawled out all over the polo fields and I was thinking about how beautiful it was outside and how I wished I left my coat at home.
So, were you carrying your coat?
Yes, yes I was. I had my Mexican food in one hand and my coat in the other, I was also wearing my backpack. In retrospect I might as well have taped a sign to my chest that said "I am a tourist, please rob me."
The blonde hair probably doesn’t help either.
Nope, sure doesn’t.
So how did the event begin to unfold?
Well, I passed a woman in ragged clothing who gave me an eery stare, sort of looked me up and down, and I admit that it gave me the creeps but I thought that perhaps I was just being judgemental. As I passed her she whistled once, and then she whistled a few more times and I eventually figured out she was whistling to the man and ten year old boy who were walking in front of me. At the fourth whistle, which must of meant cell phone (you know three for backpack, two for wallet, one for purse) the ten year old boy walked up to me and began aggresively begging for money. “Dame monedas, dame monedas!!!”
What was going through your head at this point?
Well, I was afraid that the kid was going to take something from me, but being a native Iowan I am not naturally prone to suspicion or pre-judgement and so I tried to remain calm. But I did start thinking about where my money and cell phone were and whether they were in reach.
What weren’t you thinking about him stealing?
My insulin pump and my mexican food.
Which of those two items is more important to you?
Well I haven’t had Mexican for five months (or anything with spices for that matter) and I was pretty excited about finding the ingredients for a good guacomole dip, so the Mexican food was certainly a priority but as my insulin pump makes it possible for me to eat mexican food and remain alive in general I am going to have to say the insulin pump.
It was one of these two items that he grabbed though was it not?
Yes, the little guy was so close that I sort of tried to nudge him away and when I did he grabbed my sleeve with one hand and then with the other he swiped my insulin pump, but what he didn’t know was that not only it was not a cell phone but this particular device is attached to my body. So when he started to run the cord stretched out across the sidewalk and he was clearly perplexed by the whole situation but he kept yanking and eventually the cord snapped.
What was your initial response?
To scream like I have never screamed before while simaltaneously crying my eyes out. I think it took less then a second for my tear ducts to shift to fifth gear. And I don’t think this boy had ever been presented with this situation before as he is probably used to people saying “hey, he has got my cellphone” rather then “SOY UNA DIABETICA, SOY UNA DIABETICA, SOY UNA DIABETICA, NECESITO MI INSULINO, POR FAVOR, POR FAVOR!!!!!!”
He has got the pump, what next?
He darts into the middle of a twelve lane avenue, an avenue that I would never enter without a walk signal as people usually drive around 45 to 50 miles an hour, and well, you know how they drive here. At this point his adult accomplices ran after him, or with him I should say. However you have to understand that you can’t turn off this street as there is a racetrack on one side and the polo fields on the other so there are no sidestreets or allies to go into. Even though he miraculously got to the other side of the street without being run over, once he got there there was really nowhere to go. So, like the superwoman that I am, I ran after him screaming and crying the whole time.
Did you drop the mexican food?
Did I explain how hard it is to get good guacomole here!? I guess I was in shock but to be honest I think it was to my advantage to keep carrying all my stuff because as a blond, foreigner, screaming in spanish with an obvious accent and a bag full of groceries I was able to attract the attention of one of the soldiers who was on duty outside of the military exposition and he too ran across the street. However I was so filled with adrenaline that I was actually gaining on the gang as my life was somewhat dependent upon me winning this foot race.
Did you catch him?
Well when they got to the other side of the street the woman goes left, the man goes right, and the boy gets confused and decides his best option is to hide underneath a parked car. I don't think they really have much of a plan. So anyway the soldier drags the boy out from under the car and retrieves my insulin pump, and despite my loud declerations about insulin and diabetes no one has yet grasped the fact that this is not a cell phone. The military officer was laughing at my emotional state and my accent, so I stared at him and said very slowly “this is not a phone, I need it to live!” At which point he was consumed with guilt, as he should have been! Then I thanked him repeatedly for his help. However he also pointed out that he is not the police and he can’t really arrest people.
So they got away?
Not before the man/father kicks the poor boy and slaps him around a little bit and tries to establish this pathetic rouge that he wasn’t in on it and the boy was merely acting on impulse. But when he came up to me and started asking if I was ok and pretending to be upset at the boy, I used the one spanish cuss word that our landlord lilliana taught me and told him to “fuiste” which is equilivant to “get the hell out of here,” but then I gave up and went to my old standard English cuss words and duniciations. Then when I walked back across the street I felt the urge to explain to all the street venders and military officers that I wasn’t going crazy just for my cell phone but that it was a little more important than that.
Mark, where were you at this time?
To my shame, I certainly wasn’t there to help, but to my credit I was randomly buying Abbey gifts, not knowing what she had been through.
What were the gifts?
Flowers, multicolored socks, and a pencil sharpener (which is a rare find in Argentina) all of which, in my mind, are perfect post mugging gifts.
Mark what was your first response to Abbey’s trauma?
As soon as I saw that she had her pump I skipped right over the fear and sympathy part and went straight to a sense of overwhelming pride and affection for my crime fighting girlfriend.
Abbey would you say that you were sending a message to Argentine criminals?
What was that message?
Don’t mess with corn-fed Iowa diabetics because we are not going to take it anymore!
The goal of the weekend was to go on a hilly bike ride through the back roads of Wisconsin with 10 of our friends. We wanted to thoroughly prepare for Ragbrai, while others were preparing for a triathlon. It was a success and helped keep my blood sugars steady over the weekend despite all of the brats, sweet corn and fruit salads that I ate. We took off on a hot and windy morning and rolled past dilapidated red barns, goat herds, hay bales and lamas. The first 15 miles of rolling countryside took us along side Kettle Moraine Park to the LaGrange General Store where we lunched on fresh made sandwiches and local goodies before we mounted our bikes again. We continued until our thighs started to burn and my face was so red it looked like it was going to burst and the hills no longer gave us an adrenaline rush. We parked our two wheelers back at the lake house where we were staying and went for a dip to cool off. We followed our swim in the lake with a trip to the local ice creamery, J. Laubers, where we sipped on old fashioned shakes. The evening ended with grilling out, beers and fireworks. A perfectly satisfying way to spend the fourth of July.
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?"
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.
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.
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.
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.
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.
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?
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.
I scheduled an appointment with Dr. B, my endocrinologist, whom I like to work with, and took my husband along. I wanted to find out what I had to do to get pregnant, diabetes-wise. Once we had settled in and were finished looking my numbers over, negotiating and tweaking, I blurted out that I wanted to get pregnant. Should I meet with a high-risk OB now? Would she, Dr. B, still be involved? How low do my sugars really need to be? Can I have a natural birth? I tend to do this when I’ve been thinking about something for so long, blurt everything out in a nanosecond.
The only reply that I heard was, “we have to get your numbers lower, down to 6.0, maybe lower.”
“I can’t do that,” was my immediate response. (My numbers are in the low 7’s, with the exception of one miraculous 6.9)
“Yes, you can.” she encouraged. “You have a CGMS and an insulin pump, you can do it. I want you to come to the CGMS class this Friday. There was a recent study published that states that diabetics who are really familiar with the CGMS have better control.”
"Ok." I agreed reluctantly. And then, with little faith I asked, “But really, how many of your patients get their A1C’s down
She replied, “90-95% of my patients who want to get pregnant.”
We left the office and as I was walking through the doorway, I whispered to my husband, she must be lying. That can’t be true. 90-95%?
My husband and I have been training for Ragbrai (Registers Annual Great Bike Ride Across Iowa). It's 7 days, 433 miles, during one of the hottest weeks of summer in July. It is only two months away and has turned out to be a pretty good goal for the summer, because it means we have to train to get ready. I rode Ragbrai when I was 12 years old with my father (pre-diabetic days) and thus have some experience. However, managing my sugar while doing this type of riding throws a curve ball at me. My husband and I conquered a 40 mile ride today on the Northbranch Trail to the Chicago Botanic Garden. And what I'm discovering about cycling for long distances is that I need a lot of fuel. I ate a protein bar before leaving, drank some gatorade on the way, had a banana when we took a break and last, but certainly not least, I enjoyed some delicious chocolate peanut butter ice cream on the way home. My temp basal was at 40%. The best part of this is that I didn't take insulin for any of it! I think that's amazing. My cgms read a steady 95 the whole way. Which makes me think if I rode enough miles everyday, perhaps I wouldn't need any insulin. Isn't that interesting to think about?
I despise logging. The idea of having to carry around a notebook and pen everywhere I go to log my blood sugars, food, insulin intake, exercise, stress levels, menstrual cycle or any of the other gazillon things that could affect my blood sugar for the day is horrific. I have never been particularly good at it. I typically get all whipped up about it, do it religiously for 2-3 weeks and then forget my notebook on the kitchen counter for the next month. It’s hard. And I become an obsessive freak about recording my intake, 12 oz of black tea, 1 tsp of half and half or was that 2Tbsp?, two bites of a biscotti, half of a large banana, etc. Salads are the worst, there are multiple ingredients and none of them amount to more than an ounce: 12 cranberries, 5 croutons, 6 black olives, 2 shreds of cheddar cheese, 3 bacon bits and 23 leaves of spinach. Ugh! I cringe thinking about it.
With the advent of the insulin pump in conjunction with CGMS, logging has become much easier. I take my blood sugar and the result is wirelessly transmitted to my pump, I then enter carbs and bolus. If you have a minimed paradigm like me., all this data is stored and can be downloaded later for scrutiny. I love that! But, still where does the food and exercise logging come in? Sure you ate 45g carb for breakfast last Tuesday at 6am, but what was it? We all know that 45g carb triple berry scone is completely different from 45g carb oatmeal. Well people, I have found the answer and it is brilliant! Livestrong.com! All food and exercise can be logged on this website where the database is linked to the Calorie King and then exported into an excel spreadsheet. Also! Also, you can download the app onto your blackberry, or if you are cooler than me, your iPhone, and record food and exercise on the go or look up carbs at the last minute. It then syncs up with the online version. I find it particulary useful when I am looking at my cgms graphs to be able to reference what I ate for the day or what my activity level was.
While I am newly in love with livestrong.com and I highly recommend that you try it, I’ll offer a small list below of other apps that do similar things and may be of interest to you. This is not a comprehensive list.
2. Diet Organizer
3. Spark People
4. Ascendo Fitness
iPhone Apps (for the cool kids)
1. Glucose Buddy
2. Diabetes Log
3. Islet 2.0
I have great parents. The kind that always support you, no matter what crazy idea you come with (like when I wanted to move to Argentina for a year), while simultaneously not pressuring you to do something you don’t want to do. My husband also has great parents, the supportive type with no pressure. We are lucky.
A few nights ago, my husband and I were dining with his parents and discussing their 3 yr old grandchild, our nephew, when suddenly my father-in-law blurted out, “It would be nice if the grandchild had some cousins to play with.” And then he instantly apologized for being rude while my husband and I flubbered around with a response that went something like this, “well, um, we want to have children, and we’ve discussed the subject multiple times and we will, but, um, we don’t know when. Probably in the near future. In the next decade or so.”
NO ONE has ever asked me when or if I am going to have a baby. Not my parents, nor siblings, not my close friends or in-laws, until last night. I was starting to feel self-conscious about it. Is it because I’m a diabetic? Or is everyone just being polite? Are they frightened by me being pregnant? Or are they just trying to eliminate any pressure that they are so good at doing? Perhaps it’s because the only experiences they have with diabetes are negative. Julia Roberts in Steel Magnolias didn’t exactly portrait diabetes in a glamorous light. And the one other person in my immediate family, my aunt, died of complications from uncontrolled type 1 diabetes at age 28. Do they know that Type 1 diabetics can have successful pregnancies? And that many of them do. A successful pregnancy where the baby doesn’t come out 5 months early with an extra nipple and a missing arm.
Little known to my father-in-law, by him blurting out this question, it has given me the go ahead. It was as if he gave me a vote of confidence. I want to get pregnant. (and so does the mister.)
This is the initiation of a blog about my life, my life with type 1 diabetes, my pursuit to become pregnant, and some other things that I might talk about. I am a pumper, a photographer, a wife, a cgms user, and an athlete. I haven’t met many adult type 1 diabetics in the 14 years that I have had the disease and I would like to change that.
I think a blog might be a good way to start. It’s private, whereas I can say things without having to gauge anyone’s initial reaction or facial expression, yet public, as in, the WHOLE world can read what I have to say. I’m not what you would call a center-of-attention kind of person, so I would not be likely to tell you some of what I plan to write here if you were sitting in my living room. Which is why I think a blog is the perfect way to be public and private at the same time.
My hope is to connect, share information, inspire, inform and be informed about living with Type 1 diabetes.