Stefany Shaheen

The Diabetes Dinner by ELLE

It is with pride and unconditional affection that I share a post my daughter, Elle, drafted.  She recently attended a fundraising dinner for the Juvenile Diabetes Research Foundation.  I hope that you will enjoy reading about her adventure almost as much as I did!

As I put my hands on the door handle to a restaurant where the event was held, I imagined what it would look like inside. Would everyone inside have a test kit? An insulin pen or pump? As I took the door handle with all my strength and pulled the door open, my eyes just could not take everything in. It all looked so beautiful and exciting. I looked over at a table with computers and a sign that read Check In / Check Out and thought in my mind this event is so fancy they even have a registration. Well, if I want to find a cure, I better go and register.

One hour later, I see three CIRCUS people. One man was standing on stilts and juggling while walking.  He asked me if he could walk over to me while juggling and all I could think was what if one of the pins lands on my head?  He looks like he is 30 feet in the air.  The man read my mind when he asked, “are you nervous?”  I answered the man with a “yes.”  He walked over me without dropping anything.  I was fine and it was over.  He left the room and came back walking on a ball while juggling.  This time he asked if I wanted to come and stand on the ball with him and he would hold on to me.  At first I said “no”, but then I got rid of my nervousness and stood on the ball.  He held on to my wrists as and I did it.  After a minute, I jumped off the ball feeling relieved, but still glad that I did it.

One hour later, it was time to eat!  The waitress comes over to explain that the dinner special was chicken with terriaki sauce and a side of peas.  I looked over at my dad waiting for him to give me an answer about how much insulin to take.  He doesn’t answer me until I take a roll from the bread basket .  Then my dad took my hand and said “why don’t you I start wtih 25g?”  I sneak my hand through my dress and take my pump out and press ACTIVATE to put 25 in and then carefully put it back under my dress.  The food arrived and I looked at it wondering how much insulin to take.  Dad told me I should take another 45g, but only if I was planning to have dessert after dinner.  Again, I sneak my pump out from the dress to take the insulin I need.  I cut the chicken, took a bite and it practically melted in my mouth.  Dessert was served some time later.  It was a small cup of berry sherbet ice cream.  I eat it slowly trying to remember the flavor in my mouth.  I finished the ice cream fast.

The last part of the night was a live auction,  When it started a man with a microphone was babbling numbers over and over again.  This got on my nerves a little bit, but then I remember that if I want these people to donate some dough to find a cure then I better just listen patiently and quietly.  And so I did.

The Language of “Good” Nutrition

I grew up with two sisters. My mother is also one of three girls and my father has three sisters and no brothers. My husband and I have three daughters and one son of our own. To coin a phrase from a classic childhood musical, you could safely say that I am “dripping with little girls”. Perhaps it is the influence of all these women and girls in my life or maybe it was my senior thesis in college or the evidence I collected as a collegiate athlete. Somewhere along the line, I developed a particular sensitivity to body image and food issues. Parenting a Type 1 Diabetic has only heightened the need I feel to reinforce healthy messages about food for my children – especially my daughters.

Diabetes undeniably complicates your relationship to food. The reality of having to count more that 5 grams of carbohydrate in what you consume requires an unnatural fixation on every single food choice you make every single day. Diabetes prompts questions like: Am I hungry right now or is it time to eat because of the amount of insulin in my body? Should I eat frozen yogurt or ice cream? Do I need to count the carrots in my salad? Is it okay to eat the birthday cake at my friend’s party or cupcakes at the celebration in my class at school? Are these good foods or bad foods?

Diabetes came into my life and my family two years ago. In this time, I have watched my daughter wrestle with the complexities of her own relationship to food. I have witnessed her struggle to understand what certain foods will do to her body. I have caught her sneaking “bad” food. I have helped her through many hyperglycemic episodes induced by too much of the “wrong” food without enough insulin. Together we have worked through this unchartered territory. At each step along the way, my heighten awareness about the psychological and physical impact of coping with these dynamics guides me.

I am not a nutritionist and frankly, I was never a “good” eater. I have a gigantic sweet tooth and consistently have pregnancy-like cravings for french fries. Keep in mind, I have not been pregnant for nearly four years. As Elle’s Mom, however, I now know more than I ever wanted to know about nutrition. Ask me about the glycemic index of particular foods or the latest artificial sweetner or how to substitute buckwheat flour for white flour and I can tell you all about it. Of course, I understand how the food pyramid works and appreciate that some foods are better for you than others. It is clear to me that no one – with or without diabetes – should be helping themselves to five candy bars a day. In our home, however, we have decided to let the nutrition label speak for itself. We are done with “right” and “wrong” foods. No more “good” and “bad” food labels.

Changing the language we use and the judgements we make about food has not been easy. I still catch myself feeling anxious and using a different tone of voice when Elle explains that she has chosen a banana over an apple or a bag of pretzels and a granola bar over some almonds and yogurt. We both know all too well that not only are some foods just better for you, but some foods work better with insulin than others. The truth of the matter is that some foods spike blood sugars and others do not.

What Elle and I have discovered together is that the ramifications of living with labels can be as dangerous and devastating as eating too much “junk” food. Coveting the “bad” food and constantly restricting certain foods only makes those foods more desirable. Obsessing over and applying labels made us both feel crazy. I was anxious anytime Elle wanted to eat anything on the “not so good” list. Sensing my concern, Elle started finding ways to eat the foods on that list without my knowledge and consequently, without enough insulin. We have decided that this is not a healthy way to live and are learning how to redirect this energy. Now we are spending more time making the choices we are fortunate enough to have in the refrigerator.

Learning from Oprah’s Megaphone

Okay, so I made a rookie mistake.  I am still new to Twitter and in my haste to live up to the promise of twitter by tweeting when something time sensitive is taking place, I hastily tweeted the following statement:

Toasting Oprah for dedicating yesterday’s show to the topic of diabetes. Thank you, Oprah!

Unfortunately, I tweeted this after I heard about the show from a friend who had not watched the program and before I saw it for myself. Despite my mistake, I do hope you will consider following me on twitter.  I promise that I will not make this mistake again.

Pre-tweet, I had no idea that Oprah’s episode would spark a firestorm in the blogosphere.  I think that the sixuntilme post best summarizes the sentiments of Type 1 Diabetics who saw the program and had strong enough reactions to write or comment on other posts.

For families like ours and the individual living with this chronic illness every day, it is hard not to feel urgent about helping everyone on the planet understand exactly what living with Type 1 Diabetes involves.  When Oprah decides to direct her substantial megaphone to the topic of diabetes education, we are all immediately invested in a deeply personal way.  Honestly, I imagine that it would be hard for Oprah or Dr. Oz to get it exactly right as far as we are concerned because it is simply too close to home.

Nearly all estimates indicate that Type 1 Diabetics make up less than 10% of the entire diabetic population. Understandably, Oprah’s megaphone will be focused on the 90% of Type 2 Diabetics.  I only wish that the megaphone was conveying information exclusively focused on managing and preventing Type 2 Diabetes and not confusing matters by blurring the line between Type 1 and Type 2 Diabetes.  For the Minority Diabetes Population [MDP] forced to live with a lifetime of injections and finger pricks, Oprah’s show was simply unhelpful.

The virtue of reinforcing risk factors for developing Type 2 Diabetes and highlighting key statistics cannot be overstated.  It is critical that sugar addicts like me understand that drinking one fully leaded soda every day translates into an 83% chance of developing Type 2 Diabetes.  After enduring a week of illness, Oprah’s show should be lingering in my head as a source of inspiration or ammunition to eat healthier foods, exercise and generally take better care of myself.  Instead, as the parent of a Type 1 Diabetic, I find myself preoccupied by why it is so important to me that people understand that as a mother, I could not have prevented Elle from getting Type 1 Diabetes.

Kailyn’s Type 1 Diabetes Diagnosis story

I found Kailyn’s diagnosis story on a blog that I started well before Kailyn was diagnosed. She never had some of the “classic” symptoms and she would beg me for food instead of water. So, here it is, 3 days after diagnosis:

From www.lifeistwosweet.blogspot.com

Type I Diabetes

This is the BIGGEST change in our life since my last entry. On Tuesday August 5, 2008 I took Kailyn to the doctor because she had been having a stomach ache for weeks. The night before it seemed to have gotten worse. She was crying about it and had not done that before, so I decided it was time to get it checked out. I was chalking the stomach aches up to nerves about first grade (which she talks about all the time) or just growing pains. During this time she was also eating a TON. She was ravenous all the time and cranky because of it. I figured this was because of an impending growth spurt. She wet the bed a few times in the last few weeks too, but I thought it might be a result of the virus I thought she had. Her urinating had increased quite a bit, but her brother goes so often this did not ring a bell for some reason either. Not odd for this family to have to stop 4 times to go the bathroom on the side of the road for a one hour trip. During all this time she started to look skinnier and skinnier. Her bathing suits were drooping off of her and the size 6 clothing we bought for the next school year were WAY too big. I did not understand this because she was 46 pounds which was within the limit for 46-51 pounds that a size 6 was for. (little did I know that she was only 43 pounds)

We had a routine exam at the doctors office. She had a yeast infection (her first ever), a three pound weight loss since May and we thought her stomach aches might be reflux. The doctor thought this might be all stuff left over from the virus we thought she had a few weeks ago. She had some cold sores in and around her mouth a few weeks ago, which is why I thought she had had a virus. He told us to get cream for the yeast and mylanta for the stomach aches and to come back into the office in two weeks for a weight check. If she had not gained weight in that time they would do testing.

On our way out the door he stopped us and said that he decided we should do a urine test and wondered if we could get a sample. We could not because Kailyn had gone before, so we decided we would get the next sample and bring it back to the office before 5.(when they closed)

It did not take long to get the sample. We went to get Sam at Grammie and Grandpa’s and she had to go then. We went and brought the sample and then went to Rite Aid to get the cream for the yeast and the mylanta. It seemed like we were in Rite Aid forever because Kailyn had to urinate twice and so did Sam (Sam constantly has to go to the bathroom). When we got out of Rite Aid I looked at my phone and noticed I had 6 missed calls. One of them being the Doctor’s office. I promptly dialed their numbe,r told them who I was and they said they would get the Doctor right away. (That immediately put a lump in my throat).
The Doctor got on the phone and said something I will never forget. “I hate to tell you this on the phone because I like to tell people this face to face, but Kailyn has Diabetes and you need to go to the ER at Maine Med immediately” He let us know that the Pediatric Endocrinologist was waiting for us and to get there as quickly as possible. The whole time I knew it was an emergency, but I was still hopeful that there was a mistake and the endocrinologist would tell us otherwise. WELL, he did not.

When we got to the ER the Endocrinologist was waiting there. He rushed us through admitting and helped us during triage. When the nurse was asking us why we were there I was giving her all her symptoms and Dr. Jerry (the Endocrinologist) pipes in and said.”and she has type I diabetes” Right then I finally realized it was true and our life was going to change forever. We found out later her blood sugars were in the thousands and she was a ketone level away from the Ped ICU.

I stopped blogging because it became too painful. Sam had been diagnosed with Autism in Sept of 07 and Kailyn Diabetes in August of 08. They both are doing wonderful now and we have been blessed with a new addition, Keira. We have our ups and downs with Kailyn and Sam will be in a regular K class next year and only has speech issues to work on, but I am still not ready to share our day to day life. Here is the link to August when our journey began. You can scroll to the bottom to see when it all started if you would like. http://lifeistwosweet.blogspot.com/2008_08_01_archive.html

Saving Diabetic Earthquake Survivors In Haiti

It is time to replenish Elle’s diabetes supplies.  We are down to one vial of insulin, two boxes of pump sites and we just refilled her prescription for test strips.  The battery on her pump died tonight too and it continued to beep until we finally found a replacement battery in the basement.  I could not help imagining what I would do if we were in Haiti without a home, food, water and insulin, needles, test strips and glucose needles.  For diabetics, testing supplies are as essential to survival as potable water, food and shelter.

The suffering that people are enduring in earthquake ravaged Haiti is unimaginable.  To avoid further death and destruction, it is imperative that the 300,000 Haitians living with diabetes have access to life saving medication.  I applaud the heroic efforts made by the International Diabetes Federation, Insulin for Life and the Haitian Foundation for Diabetes and Cardiovascular Diseases to get these supplies to people coping with astonishing devastation while managing this disease.

To help ensure that Haitian families are able to access diabetes supplies today, I am going to make a contribution to the IDF Diabetes Trust Fund:

http://www.idf.org/donate-idf-diabetes-trust-fund-haiti

I encourage you to join me in making a donation today to guarantee that families like mine who happen to be living in Haiti and are facing unprecedented destruction have one less thing to worry about tonight.