Stefany Shaheen

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.

Perpetual Planning and Parenting A Type 1 Diabetic

As a Type A Virgo, planning happens to be one of my strengths. I remember discovering my anal attention to detail when I was in Second Grade and kept an agenda book to track my daily activities. I vividly remember mapping the pros and cons of particular decisions and actually making lists of my goals with a timeline for how long it might take to achieve those goals.

Ironically, I now have a daughter who desperately needs for me to put my planning skills to work. In doing so, I rationalize that I can help keep Elle healthy by anticipating her every need. I should be able to ensure that she always has sugar with her in the case of a low. My ability to focus on details should help Elle remember steps like taking her test kit and glucagon pen with her when she leaves the house. My planning skills should be useful for keeping track of when her pump site needs to be changed and when prescriptions need to be refilled or when doctor appointments need to be scheduled.

Right?

The truth of the matter is that helping my daughter manage Type 1 Diabetes has put my strong planning skills to the test. The chronic nature of this disease means that there is never one day when we do not have to have plan or take countless extra steps. Caring for a child with Diabetes is far more challenging than tracking my daily activities or weighing the advantages and disadvantages of a particular decision. Not to mention the number of dynamics that come into play.

Some days Elle is an active participant in planning meals or replenishing supplies. Planning can even feel liberating to her in certain circumstances. After one exceptionally difficult conversation about how to avoid high blood sugars during the after school hours, which left us both in tears, Elle took out a notebook and asked me to help her make a list of better snack choices. Other days, the reality of thinking through this many steps feels like the biggest chore to her and to me.

Then there are times when additional planning is required – holidays, vacations, snow days, play dates, trips to the movies and on and on and on. As a write this post, my family is away for a week to commemorate my husband’s upcoming 40th Birthday. It is the first time we have traveled as a family for more than a weekend since Elle’s diagnosis. Some of you may have followed my tweets about the fact that our first day on vacation was spent fighting with our insurance company to get Elle more test strips and paying a cab driver $90.00 to wait for us while we stood at the pharmacy counter as the pharmacist navigated his way through 5 different phone calls over 2 hours. Clearly this was, in part, my failure to adequately plan for our trip.

In dark moments, I blame myself for missing little steps and agonize over the potential cumulative effect of a high blood sugar due to poor snack planning or the risks associated with Elle leaving the house on occasion without a glucagon pen. On better days, I give myself the latitude to acknowledge that Diabetes can be relentless. Even with all the planning skills in the world – life happens.

A Conversation with the President About Diabetes

It is a remarkable privilege and an unprecedented opportunity to meet or speak with the President of the United States. In my life, I have had a chance to meet on more than one occasion three different Presidents and two different Vice Presidents. As a citizen of the First In The Nation Primary State of New Hampshire, I have also met countless candidates for the Oval Office on both sides of the political aisle.

Let me say that I get nervous each and every time I have the occasion to get my photo taken with an esteemed public official – often considered to be leader of the free world. Standing in the notoriously long and winding photo op line, I always diligently rehearse what I want to say in my 2 whole minutes – or more like 90 seconds – of face time. The goal is to sound well-informed and engaged. Ideally, I come up with something that makes me feel like somehow I am memorable – even though I know enough about the process to know that given the number of hands these people shake it is nearly impossible for me to be remembered as more than just another vaguely familiar face.

This week I had a chance to stand in a relatively short photo line at an event that President Clinton was hosting for my mom. Only this time, I knew exactly how I was going to use my 90 seconds of face time. On this particular day, my comments did not need to be rehearsed because I had been waiting for a time when I could extend my gratitude to President Clinton directly. I had been looking forward to thanking him for his leadership on the issue of childhood obesity.

To reduce the number of overweight or obese children in the United States, President Clinton established The Alliance for a Healthier Generation. The Foundation selected this particular issue because nearly 25 million American kids are overweight or obese. This epidemic has become a pending health and economic crisis resulting in children being diagnosed with Type 2 diabetes along with heart problems, osteoarthritis and sleep apnea at alarming rates. I have heard President Clinton point out that “unless action is taken now, this generation of young people will be the first in American history to live shorter lives than their parents.” To learn more about The Clinton Foundation’s effort to tackle the rising rates of childhood obesity visit www.clintonfoundation.org.

I was going to capitalize on this unusual alignment of a key public policy issue with a strong personal connection and a powerful leader. This time, my 90 seconds would feel to me like time well spent. As I approached President Clinton and reached out to shake his hand, I stopped and said, “thank you, Mr. President for your commitment to addressing childhood obesity.” In less than 60 seconds, I went on to explain that I have a daughter with Type 1 Diabetes and the thought of children developing Type 2 Diabetes strictly because they are not eating healthy foods and are living sedentary lives is unimaginable. The posed expression on President Clinton’s face changed and he immediately began describing these 9-year old girls he met in New York City who all have Type 2 Diabetes.

As my 90 seconds turned into two minutes and his handlers started getting anxious, I swiftly mentioned this blog. I said that the blog is intended to shed light on the unavoidable challenges of living with Type 1 Diabetes. Given my understanding of life with Type 1 Diabetes, I found his efforts to change the fate of other families by eliminating the incidence of Type 2 Diabetes to be an inspiration.

Ultimately, this was the first photo op line that I left with more than a picture.