My "Care Page"

Day 4 Prompt: Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. 

My initial thought when reading this prompt was to create a list of links to organizations that promote diabetes awareness and raise funds for diabetes-related research. Then I thought maybe I should share a few links to previous posts I've written., You know, our diagnosis story; how I dealt with with my son's diagnosis; how and why I started advocating myself, stuff like that.

But then I really thought about it; about what I would want to know if our diagnosis was today...and the answer was obvious. I would want to know that I wasn't alone. And that I would never ever be alone with diabetes. Because a diabetes diagnosis comes with an open-armed and open-ended invitation to one of the coolest, most welcoming, supportive, and totally awesome communities out there. The DOC really does have all the answers. Have a question? Post a status update on Facebook. Feeling overwhelmed? Send out a tweet. Need a virtual hug? Simply ask, and the response will amaze you.

Diabetes sucks no matter how you tilt your head, but being able to share frustrations, concerns, and day to day dilemmas with others who understand what you're going through is invaluable.

Oh, and if you are looking for links to previous posts, check out:

Our Diagnosis Story

Why Do I Write?

Type 1 Diagnosis, Now What?

And visit the websites of your national and regional diabetes organizations. See the "Resources" tab above for a few links to start.

What is Type 1 Diabetes?

Day 2 Prompt: Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism? 

When people learn that my 12 year old son has type 1 diabetes, the usually make certain assumptions about that the disease is, or where he "got it" from. Sadly, misconceptions are rampant when it comes to type 1 and the volume of incorrect information floating around is abundant. Sometimes it seems easier to tell people what type diabetes IS NOT, rather than what it is. 

It is NOT:

• caused by eating too much sugar, either as a child or adult, or by sugar at all
• caused by any lack of care or neglect on the part of a parent or caregiver 
• a casual disease that comes and goes. It is 24/7/365.
• a result of being obese or overweight, nor does it have anything to do with weight at all
• contagious, meaning you can't "catch" it from someone else
• a disease with diet restrictions. My son can eat chocolate, sweets, starchy foods, and sugar, just like your child (though when eaten in excess it WILL cause cavities, and lead to obesity and other health issues, just like in your child). We just need to balance his carbohydrate intake with insulin.
• curable.

Type 1 Diabetes is an autoimmune disease in which the insulin-producing beta cells in the pancreas are destroyed, causing the body to stop producing insulin, and blood glucose levels to rise. Without insulin, the body cannot survive, so type 1 diabetes IS fatal if untreated. Fortunately, it is treatable with insulin, which can be delivered either via syringes or subcutaneously using an insulin pump. While insulin therapy is far from a cure for type 1 diabetes, it provides patients with a tool with which they can live a long and healthy life.

It is a disease that never sleeps. It IS manageable, but with vigilance and constant care. Blood glucose levels must be checked throughout the day and night, and insulin must be given multiple times per day to keep blood glucose levels within an ideal range. Variations in blood glucose levels throughout the day are to be expected, but readings outside of the target range (highs and lows) should be treated immediately. Food intake must be closely monitored (carbohydrate intake causes a rise in blood glucose), as do activities that burn carbohydrates, such as exercise. Other factors that can, and do, affect blood glucose, include temperature, stress, illness, and hormones.

There is no cure for type 1 diabetes, so utmost attention to diabetes management is critical and lifelong.

Ok, so that's a few more than 5 things. It is what it is.

Type 1 Diagnosis, Now What?

Day 16's prompt asks bloggers to use a picture or video to inspire a post. I've chosen a picture that contains a quote that I find particularly applicable to living with type 1 diabetes.

A diagnosis of type 1 diabetes can be devastating. Crippling even. And is it not a disease of patience. Diabetes doesn't wait for us to grieve, or be angry. It doesn't even afford us the time to let the enormity of its implications sink in. No, diabetes is a disease of action. It has requirements; things that must be done to enable survival. But how? Amid the shock, confusion, or overwhelming despair, how does a parent move forward and ensure the best care for their child? The only way we can: one step at a time.

Undiagnosed Tragedy

Type 1 Diabetes has struck again, and this time taken the life of a 35 year old man. It was with great sadness that I learned, a few months ago, an acquaintance of mine from high school had died suddenly. While I didn't know him well, we had a number of common friends, and shared one very close friend. At the time of his death, there were many questions. No one knew what had happened and there didn't appear to be an obvious cause of death. Until now. Late last week I was informed that he died as a result of undiagnosed type 1 diabetes.

My initial reaction was shock, then anger, then sadness, as I tried to explain to my heartbroken friend that it takes all of about 3 seconds to diagnose type 1 diabetes; that the symptoms are obvious; that it is a manageable disease; and that his death could have been prevented had someone, anyone, known what to look for. He had suffered months of weight loss, increasing dehydration, and, finally, severe flu like symptoms.

Type 1 diabetes continues to be a silent killer. For those of us within its sphere - who are type 1, or have a loved one with type 1 - the symptoms are easily recognizable. Yet, for those outside of the circle, it is an invisible illness. Education and awareness on the signs of type 1 diabetes are lacking. Period. Like many others, I used to be in the dark. When Dylan was diagnosed I knew absolutely nothing about diabetes. I had no idea that his excessive thirst, frequent urination, massive and sudden weight loss, pallor, and lethargy, were signs of hyperglycemia induced ketoacidosis. Like most parents of a type 1 child at the time of diagnosis, I just thought he had the flu.

While my early advocacy was always focussed on finding a cure for type 1 diabetes, with time I have realized more and more, that awareness and education are just as, if not more so, critically important. Never has that been more obvious to me than now.


*On a side note, this is the 3rd person from my high school class that developed type 1 diabetes as an adult. The 3rd out of 375 graduates. That's a stat much higher than the average.

Dreaming of Diabetes; Sibling Prevalence

As if thoughts about diabetes do not occupy enough of my waking time, last night I dreamt about diabetes. In my dream, one of my biggest fears materialized: my daughter was diagnosed with type 1 diabetes. The level of detail in my dream, right down to her blood sugar number at diagnosis, was so vivid that when I awoke there was a brief moment in which I was so confused by the dream that I couldn't figure out if it was a dream or reality. As sleep faded away and I became more alert, I knew I had been dreaming, but the fear in my heart is pertinacious.

According to the Joslin Diabetes Center, the prevalence of diabetes amongst siblings in significantly higher than that of the general population. I fact, it is 10 times higher, meaning that, "If one child in a family has type 1 diabetes, their siblings have about a 1 in 10 risk of developing it by age 50" (Joslin). Now, in addition to the previous statistic, there are a number of different factors that COULD affect my daughter's actual likelihood of diagnosis. First, her and Dylan are half siblings (different fathers) and I honestly have no idea if that makes a difference or not. Did Dylan inherit some kind of "diabetes gene" that led him to develop type 1? And if so, did he get it from his father or from me, or both? Second, my daughter has a slightly different racial background than Dylan. While I am caucasian, my husband is Hispanic, so our daughter is a combination of both. Climate clusters are prevalent is type 1 diabetes diagnoses, and "caucasians (whites) have a higher risk of type 1 diabetes than any other race. Whether this is due to differences in environment or genes is unclear" (Joslin).

Based on all of the above, is my 15 year old son more likely to develop type 1 because he and Dylan share genes from both parents? Who knows. I try not to think about it, in order to prevent myself from going completely crazy, but clearly it has permeated my dreams...

Our Diagnosis Story

I've decided to go in a different direction with today's post. I have never written about Dylan's diabetes diagnosis, and I think it's about time I did.

Monday, November 21st, 2005 was the day Dylan was officially diagnosed with type 1 diabetes, though his symptoms certainly presented prior to that.

Approximately 5 or 6 days earlier, we noticed that Dylan wasn't feeling well. It started with some extra tiredness, and increased thirst, and by Thursday of that week his thirst was insatiable. We have a water cooler in our kitchen and I remember that Dylan would grab a pint mug from the cupboard, fill it up with water, chug it all down, and then fill it and drink it again. He started going to the bathroom more and more frequently, and even wet the bed one night, though he had been toilet trained for over 2 years. He was pale and lethargic, but we simply thought he had the flu. After all, it was November (flu season), and there was no history of diabetes anywhere in our family. In fact, I knew absolutely nothing about diabetes at all, so I never would have suspected it.

Friday, November 18th, my husband and I went to Las Vegas for the weekend with the company my husband was working for at the time. My mother stayed in our house with the kids while we were gone. I spoke with her a couple of times over the weekend and learned that Dylan was getting sicker and sicker, though still none of us suspected diabetes.

On Sunday afternoon, my husband's dad took all three kids out for lunch. Dylan was incredibly thirsty by this point and ordered a coke (regular, not diet). He drank it all and had a couple more before lunch was over.

Sunday night the children went to their aunt's house for dinner. She noticed how sick Dylan was and gave him a couple of mandarin oranges to eat.

In retrospect, of course, I know how dangerous everyone's actions were. Three pint sized cokes and two mandarin oranges, plus lunch and dinner equals a whole lot of carbs for a diabetic. But everyone was simply trying to help Dylan feel better, not realizing that their actions were actually pushing him closer and closer to a hyperglycemic coma.

My husband and I returned from Las Vegas Sunday night to find Dylan very sick and already asleep for the night. The next morning he had a appointment with an Ear, Nose, Throat specialist because of a virus he had battled a few weeks earlier (another hint we missed). My mother helped me take him to the specialist because he was so sick by this point. I remember sitting in the waiting room and Dylan couldn't stay awake. It was 9:00am and he had slept 12 hours the night before, but he was exhausted. After a brief appointment with the specialist (who also agreed that Dylan had a bad flu), we decided to take him into the clinic up the street and have our regular doctor take a look at him.

Our doctor was on maternity leave and her replacement was a very young, recent graduate, who had just started practicing medicine (I honestly believe this was a blessing because her knowledge was so fresh and up to date). She took one look at him and said, "I think he has type 1 diabetes. But let me do a quick test to confirm."

She left the room for a minute and returned with a blood glucose meter, the first one I had ever seen. She did a quick finger poke and applied the blood to the strip. The screen started flashing "HI," but I had no idea what that meant. The doctor explained that the machine was testing the level of glucose in Dylan's blood and that any number over 10.0 mmol/l (180 mg/dl) would indicate a likelihood of type 1 diabetes and require further testing. I asked what the "HI" meant and she informed me that it meant Dylan's blood sugar level was too high for the machine to calculate. This particular tester had a measurable limit of 27.7 mmol/l (498.6 mg/dl).

She was calm, but explained that he needed to see an endocrinologist as soon as possible. She called the pediatric endocrinologist directly and told her about Dylan's likely diagnosis. The endo agreed to see us immediately. We literally got in the car and drove the 6 blocks to the pediatric endocrinologist's office. Again we were met by a young female doctor who was a wealth of information. She looked at Dylan, who by this point was sleeping on my lap because he could not stay awake even for minute, and gave us the news that he had type 1 diabetes.

The endocrinologist called the hospital and had Dylan admitted right away. She told us to head over there (it was across the street) and that she would clear her afternoon schedule and meet us there shortly.

Everything was happening so fast and I still really had no idea what diabetes was. I certainly was not aware of the gravity or permanence of the diagnosis. Boy was my world about to change!

When we got to the hospital we were rushed upstairs to pediatrics, where a diabetes educator and a nurse were waiting for us. A lab technician came in and took some blood and then over the next few hours I was overloaded with information about diabetes and all of things we would need to do to look after Dylan. I learned about insulin injections and about how to test his blood sugar level. I remember the diabetes educator having me practice injecting an orange and then injecting Dylan for the first time.

A dietician came in and taught me about carb counting and we designed a daily meal plan based on 3 meals of 45 grams of carbs each and 3 snacks of 15 grams of carbs each.

At some point the endocrinologist arrived and gave us the results of the lab work. The high glucose level in Dylan's blood confirmed that he had type 1 diabetes. In fact, his bg was one of the highest they had ever seen in a child. It was 51 mmol/l (918 mg/dl)!! They informed me that Dylan had been within 24 hours of a coma. The endocrinologist began to devise an insulin regime for him based on his meal plan and body weight.

I desperately tried to take everything in, but it still had not registered with me that this was a permanent, life threatening condition. In fact, I don't remember anyone ever telling me just how serious it really was. Perhaps they assumed I knew, or they didn't want to overload me. Over the 2 days of training and education, diabetes care was always presented to me in a way that emphasized its manageability. Looking back today, I realize how critical that was in defining the way I would view diabetes from then on. I never panicked or felt any sense of loss or grief for Dylan. I simply went about learning everything I could to ensure that I could provide him with the best possible care.

I remember the diabetes educator being surprised at how calmly I accepted Dylan's diagnosis and how vigilant I was about learning everything I could about it. Maybe that's the teacher in me. She told me that she has noticed over her years of experience in working with families affected by diabetes, that when a child is diagnosed, the parents usually react in one of three ways:

1) They immediately grieve, as if they have lost something very close to them

2) They essentially go numb and either deny the presence of the disease or get angry, questioning why them

3) They accept the diagnosis and jump right into fight mode

I was the latter. My reaction was to fight. To do anything and everything I could to find a cure. To fundraise, volunteer with JDRF, advocate, and educate. I needed to know that I was giving it my all. And while I've certainly mellowed a bit over the past 6 years, I continue to advocate for Dylan and the millions of other people living with diabetes. I no longer hold out hope that a cure is around the corner, but I continue to believe that it is out there somewhere, and it will be found one day, hopefully in Dylan's lifetime. And I understand that research takes time and, above all, costs money, so I continue to fundraise for JDRF.

I know diabetes is a scary disease. I know it's life threatening, and I know we always need to stay on top if it. But I don't let it take over our lives and I will never let it define Dylan. He is so much more than his disease.

Happy 11th birthday Dylan. I love you and I am so proud of you.