Wednesday, November 24, 2010

Going Steady



This weekend was wonderful! It was warm enough to be outside and we truly enjoyed our time.
On both Saturday and Sunday, I got my bike out, bundled up and went up to Prospect Park for a Ride. It was Chilly, but so worth it, and many of my cycling friends were Riding 109 Miles (yes, 109) in Tucson, AZ for the final JDRF Ride of the season.


Saturday afternoon we went into the city and enjoyed Central Park, Ice Skating and a quick visit to MoMA! Sunday afternoon while Billy watched football, Emma Rose and I got our Nails done and walked around our neighborhood!




The Icing on the cake was that the whole weekend + my blood sugars were steady. No highs, no lows, no swings or corrections for meals! It was a great feeling!

When everything can be so good in life and we have amazing opportunities to spend with our loved ones and families, diabetes can sometimes be a road blocker. It has an effect on your energy and your mood, or the need to stop and eat or fight headaches due to blood sugars raising.

It was a great weekend, I like going steady!

Thursday, November 18, 2010

Call to Action!




Everyone get out your phones and call your congressmen and women in Support of the Special Diabetes Program. The SDP will expire unless it is renewed this year, and this is the time to call.

"The Special Diabetes Program is our nation’s most effective tool to combat diabetes and its complications. The program has received strong bipartisan support in Congress since 1997 and, given its successes, has proven to be worthy of continued federal investment."

find out who you need to contact here: https://writerep.house.gov/writerep/welcome.shtml

Without this funding we will loose CRITICAL dollars for research! WE have come so far, but still have a ways to go! Please help us secure this funding for For a Cure!

Thank you!

Tuesday, November 16, 2010

???


Last night after my kettle bell class, I noticed that my CGM sensor was becoming detached and so I took it off. The sensors they say are suppose to last 7-10 days, but because of my sweat and activities (here I go again) I find myself having to change them about every 5-7 days.

Later in the evening I reattached a sensor to and waited for it to calibrate- this takes 2 hours and then you enter 2 blood sugar readings that are taken back to back. Not paying attention to the time when I attached it, I then figured out that 2 hours would be around 11:30pm- after my bedtime.

So, I kept myself up until the time, entered my 2 blood sugars and by that time I was low. I sat awake for a bit to bring my blood sugar up and I waited for my CGM to register my blood sugar- it didn't for the next 2 hours the screen read ???

???- well I am not really sure what that means- the book states "The Receiver cannot understand the Sensor"... I don't like the ??? especially during the night.

I went to sleep and was alarmed another 2 hours later with the CGM vibrating, so at 2am I was up testing and calibrating.

Another fun night with Diabetes.

Monday, November 15, 2010

My first "Photo Shoot"

This morning while sitting at my desk working on a few things, I got a call from our Director of Advertising and Promotions. I have seen her quite often over the past few days at Type 1 Talk, and the Promise Ball on Saturday (NYC Gala) She can be described as energetic, excited and enthusiastic. Shes been working a lot lately with my boss on some video productions projects such as we did yesterday, so I was surprised when she called to talk to me.

She asked if I wanted to be part of the upcoming JDRF poster/marketing material. The photographer is coming tomorrow Tuesday to the office after work to 'take some shots' They use all Real Type 1 Diabetics who have an affiliation- employee, volunteer with JDRF.

I text Billy and told him about it- he gets bragging rights that he is engaged to a model- ha:)

So I will sleep well tonight so my eyes are ready, I will try and work out in the morning to get my energy and blood sugars on track and I will be ready for my 'photo shoot.'

It should be funt.

Sunday, November 14, 2010


Today is World Diabetes Day! It is the big day in the diabetes community to advocate and create awareness about Type 1 Diabetes! Today at JDRF we produced a live broadcast on behalf of our Grassroots Advocacy Program. Over the past few weeks individuals submitted questions via Google Moderator- for our Moderator Rik Kirkland (International Board member) to ask our Panelists. We had 3 JDRF staff members, one volunteer and one writer/blogger Kerri Sparling, who has been T1 for over 24 years! It was a great event and a sucess! To view the video via Ustream please watch below.

http://www.ustream.tv/recorded/10862683



For reference some of the sites talked about on today's broadcast are:

Kerri Sparling- http://sixuntilme.com/

Juvenation- http://juvenation.org/user/cs_jdrf_home/default.aspx

Special Diabetes Program: http://www.t1diabetes.nih.gov/T1D_CTCR/T1D_SpecialFunding.shtml

JDRF Clinical Trials: https://trials.jdrf.org/patient/

JDRF Advocacy: http://advocacy.jdrf.org/

Thursday, November 11, 2010

In Honor of our Veterans



Today we honor our Veterans- past, current and future. Thank you!

Wednesday, November 10, 2010

Awareness of Unawareness

This morning I woke up to my CGM vibrating- LOW- flashing on the screen. It was 6:22am, and it read that my blood sugar was 55, I got anxious because I didn't feel like 55. And I thought I knew what 55 felt like- a little shaky, sweaty, and a little out of it; but aside from it just being early, I felt fine. With a LOW staring back at me I didn't like this, hoping I wasn't having hypoglycemia unawareness. I tested and my meter read 97- the CGM just needed to be calibrated.

Low blood sugars hit us all differently, and all lows are different. There are times where I have been 90 and shaky- maybe I dropped quickly from over 200. There have been times when I have woken up at 60 and been soaked by my own sweat- had to shower and change during the middle of the night. There was a time on vacation when I woke up and tested at 36 walked into my friends bedroom and told her not to worry if she heard me I had low blood sugar, I was going to take care of it now... Low blood sugar is dangerous, especially overnight, but unawareness can be tragic.

Hypoglycemia unawareness is something I have learned and heard more about since I started working at JDRF, because I myself don't have a history of experiencing it- unfortunately many do.
Normally when a person's blood sugar drop low, the body relaseses glucagon and epinephrine (adrenaline). Glucagon is the body's natural hormone that raises blood sugar and epinephrine causes the response in our system. People with Type 1 diabetes have low (or no) levels of glucagon and sometimes have lost the response symptoms that would make them feel it.

The unawareness can be very dangerous at any time, but especially during the night and sleeping. Almost 20% of people living with T1 experience unawareness. It may be brought on by having diabetes for many years, having really tight control of your diabetes, stress or depression, alcohol- There is no single cause, but the effects can be dangerous and life-threatening.

We can be careful and aware with our numbers- sometimes it isn't enough, but for now even though I am usually very aware, I still like my CGM waking me at LOW, even if it is a false alarm.

Tuesday, November 9, 2010

D- Blog Day


Today is D- Blog Day, where those who blog or are blogging, or who want to blog will today write six things we wish people knew about diabetes:

1.Understand the difference between Type 1 and Type 2. Diabetes is not just a blanket condition, T1 and T2 (and gestational for that matter) are very different, the disease doesn't discriminate and there is no common look for it. It affects everyone- differently.

2. Having Diabetes is a daily struggle- and very emotional at times. Everything has an affect on blood sugars and insulin levels. From the combination of foods we eat to the mood we are in, everything influences what is going to happen to our sugar levels, and it is not as simple mathematics equation.

3. Diabetics can do anything and everything they want. And if you know any of us, you know this is true. We are athletes, doctors, lawyers, students, mothers, advocates. We are a passionate group of people who support each other and work together for a single mission.

4. Diabetes affects everyone differently. What works for one, does not work for all. It is what works for each individual and their management. It takes time to figure this out, and it changes over time. It is unpredictable, so we just need to manage it to the best of or abilities.

5. Having an insulin pump does not mean I have the bad type of diabetes. It is all bad, and it is most likely much better now then when I was without the pump- or the CGM for that matter. Having the insulin pump gives me the best control and good control will reduce my risk of complications. These are the the tools we have today to mimic a normal pancreas as closely as possible.

6. We can eat this, we can eat that, whatever it may be! and we can tell you the nutritional value of just about anything.

Having diabetes is hard, it is a constant battle between the current and the future and how every decision we make has an affect on us. I have good days and I have bad days, and I am just fortunate to have a great support system and a lot of great influences in my life! I did not choose diabetes, but I choose every day to be healthy, happy and enjoy life.



Monday, November 8, 2010

'Juvenile' Diabetes


This weekend we had the joy of a lovely time with Billy's daughter Emma Rose. She is 6 years old, a beautiful, smart and kind soul! We spent time on Friday night cooking and reading and just hanging out. It is an amazing to see her grow and watch her learn and approach life with innocence and passion.

It is amazing to see her at this age and there are things about her that remind me of myself as a child- but I also look at her as this young six year old and think that it was at her age I went to diabetic camp during the summer and learned to give myself my own shots. At the time, I had had Type 1 for 4 years, I was taking 2 shots a day and daily management was much less developed as it is today.

These days so many children who are diagnosed with T1 are using insulin pumps, because of the flexibility to mimic the pancreas, have better control and the assurance that they are getting their insulin. It is amazing to look back and think of how thing have changed in my own life-time of diabetes management.

In 2010 as many as three million Americans may have type 1 diabetes. Each year, more than 15,000 children - 40 per day - are diagnosed.

And with the advancement of research and treatment, these children are able to manage and control their disease and live healthy relatively normal lives- far beyond what was possible years ago.

Thank you for this! I am lucky to have the life I do and share it with those that I love.

Friday, November 5, 2010

Pump it? or not?

After living with T1 for almost 28 years, people would probably assume that I had things down and under control. The truth is, it isn't always that easy.

Almost three years ago, I got FED-UP with my insulin pump... my stomach was becoming sore and infected from 8 years of site alternations, and I felt like it got to the point where I wasn't metabolizing the insulin. So I took it off, and I put it in the medicine cabinet- called my Doctor, and started back up on Multiple Daily Injections (MDI) of Lantus and Humulog.

At the time, I was in between Endrocrinologists and I worked with my primary care physician, using some of my old rates (of course I had them written down) When I finally went into see my new Dr, we worked together on adjusting my daily needs. And it worked for a while, making adjustments is just part of diabetes managment.- being aware what foods make you higher, what activities drop you lower and just over-all being in- tune with your body. It is an amazing feeling to know that I can contribute how I feel to what I eat or what I have done- I believe that Body Awareness is important for everyone, but for Type 1 diabetics, it is necessary.

The MDIs worked for a few years, until I moved to NY. I was getting low blood sugars a few times during the night a week, and for a while I couldn't figure out why. In January, when I started at JDRF, I was fortunate to have resources into a new team of Doctors. When I went to see them we talked about overall management and when the issue with the low blood sugars came up , it was simple- I was taking too much long acting insulin to accommodate my form of transportation- walking. Even if it was to the grocery store or to the gym (not the actual work-out itself) it was more than I was doing before and decreased my insulin needs. The lifestyle changes and the access to great healthcare team, also led me back to the insulin pump and the CGM- my goal to get to and maintain perfect control.

The choice of insulin pump or no insulin pump is such a personal decision. I know many people who do both. To pump, you make the decision to be attached, you have an external device and a tube on you at ALL times- it can get uncomfortable, and frustrating. But for me and my needs right now with 7 different basal rates, different carb ratios and correction factors for different parts of the day, it is what I need right now- maybe not forever, but for now I am bionic, tubes and machines attached. I try to think it is natural, I mean everyone has multiple devices right?

Thursday, November 4, 2010

Me in a brief Questionnaire

What type of diabetes do you have: Type 1

When were you diagnosed: December, 1982

What's your current blood sugar: Dexcom says 92

What kind of meter do you use: One Touch Ultra Link, it links with my Mini Med pump so I can use the Wizard Feature which gives my brain a small break from calculations

How many times a day do you test your blood sugar: 6 on a steady day- if I am not running high or low. Down from 10-15 pre- dexacom.


What's a "high" number for you: I'm don't like to see it 180 +. but somedays I will take what I can get.

What's do you consider "low": below 70,but I get nervous when I am under 100.

What's your favorite low blood sugar reaction treater: Glucose Tablets, I trust them, they aren't too sweet and I can handle them at almost any time of the day, although I never like to.

Describe your dream endo: I don't know if I have a dream Endo, but I know that I have had some ones I would pass on second time around, and right now I am overly happy with my Med team out of Naomi Berrie Diabetes Center- they are great! I love it that they are so accesable and responsive if I have a question- they check their email 24/7 (almost)

What's your biggest diabetes achievement: I would have to say riding in the JDRF Ride to Cure this past July. I rode 100 miles and raised over $7,000.00. And when I crossed the finish line at 110 it was a great feeling after 7 hours of riding a bike!

What's your biggest diabetes-related fear: Right now my biggest fear is that when I have children, one day they will develop T1. When I was younger I was told that it was less than 2.5% chance, but I know that is not the case...

Who's on your support team: My Fiancee and my mom- and my Grandmere, who always calls to make sure I am going to the Dr and I am doing well- she is the most amazing!

Do you think there will be a cure in your lifetime: I am always hopeful, but I am doubtful. There has been a lot of advancement in the last few years, but there is still so far to go. I have confidence in the development of devices, such as the artificial pancreas, that will make living with diabetes easier; or even in treatment such as beta cell regeneration, or preventative treatments, but a CURE for those of us who have and have had T1 for many year, is still quite far off.

What is a "cure" to you: A cure would be me not having to have an artificial device to rely on for my insulin, to not have to calculate carbohydrate ratios or fluctuations in blood sugars or worry about highs or lows... to be honest, I have no idea what a cure would be like, because I have no cognitive memory of pre-diabetes.


The most annoying thing people say to you about your diabetes is: When people ask if you can eat sugar. When people try to tell you what you should and shouldn't do when they have no idea what it is to live with this condition. When they think if they had it, they would be in such good control.

What is the most common misconception about diabetes: That Diabetes encompasses both Type 1 and Type 2- education and public awareness are key to understanding the key differences.

If you could say one thing to your pancreas, what would it be: I hope we can work better together someday! I will forgive you!

Wednesday, November 3, 2010

Roller Coaster Ride


When I got into work this morning, someone in the office had brought in their left over Halloween goodies and was offering them to the office. (is this common office behavior?) Reese's Peanut Butter Cups, Kit Kats, pretzels and more.

They approached my holding a bag of the mini pretzels " Would you like some pretzels?" (of course directed to me, the diabetic)
Not wanting anything I responded " No, thank you,"
" You can't have the candy right?" she asked- (because just not wanting anything isn't ok?)
"I can have candy..." and not wanting to explain myself yet again (because I had made the same statement to the same person the day before) I left it at that, hoping that someday the information will permeate.

I work at a fundraising organization that supports research for Type 1 diabetes, I find it extremely frustrated when office talk conversations come to diabetes and there are questions and comments like this. The truth is, at my office there are not many Type 1 diabetics, but our mission is to find a cure for diabetes and its complications- so I don't find it to much to ask that we all understand what Type 1 diabetes is.

A great start to my day after yesterday's blog. A day which has been at the very least- frustrating.

Looking at my CGM (continuous glucose monitor) screen for the last 24 hour cycle it looks like a roller coaster full of high climbs and sudden drops. Finally, as I am settling in for the night, so is my blood sugar- finally stabilizing in the lower 100s.
It began at 4am when my CGM was vibrating LOW- it read 65. I had 2 glucose tabs (8 carbs) to stabilize it, but when I woke up it had climbed to 170 and before I had breakfast it had risen to 203-ouch! I took insulin (correction and bolus) for my blood sugar and for my breakfast and headed out to the office.

Two hours later, after passing up the Halloween treats, I went into see the visiting nurse in our office for flu shot and my CGM was once again LOW- 56 with a down arrow; signifies dropping fast. To correct this I had 5 mentos and watched my blood sugar rapidly turn around and climb, up with double arrows up (rising really fast). There was nothing I could do now but wait until it stabilized and I felt I could safely try and bring it down with insulin.

However my plan didn't work, I was stacking boluses (taking lots of insulin with no results) and my blood sugar stayed on the higher side with some fluctuation for the remainder of the work day. When I was leaving work on my way to yoga I was back to double arrows down...

I don't believe I did anything wrong today, I counted my carbs perfectly, I corrected for my highs and I tested my blood sugar every hour on my machine to make sure my numbers were acurately calibrating. Some days are just harder than other, and there are those circumstances (sleep patterns, stress, hormones...) that cause unexplainable fluctuations in your blood.

Days like today become a loose loose situation, high blood sugar causes me stress and stress causes high blood sugar. The fluctuations cause headaches, tiredness, mood changes and over- all exhaustion.

I am hopeful for a better, more consistent day tomorrow, and I will continue to do what I can to manage my health- one day at a time!

Tuesday, November 2, 2010

National Diabetes Awareness Month

November is National Diabetes Awareness month. To support this and bring awareness, I am going to try my best to post something here every day of the Month (I know I missed Nov. 1, but this is a start)

This year, 2010, has been an amazing year... I am getting settled in NY, I rode my first hundred miles to support JDRF, I got engaged to the most amazing and supportive man, I turned 30 (gulp..) and it will be my 28th year of living with Type 1 diabetes.

Recently I have been thinking a lot about the misconceptions of the condition and the blanket use of the term Diabetes. While there are similarities between the conditions they are quite different.

I am a Type 1 diabetic! I have an insulin pump, which works similar to a pancreas to dispense insulin into my body 24 hours a day- but I control it. I tell it when and what I am eating (my head spins with nutrition facts).

I can eat what I want (as long as I know what it is)
I am not allergic to sugar.
I did not eat too much sugar as child to cause this (I was 2, and my parents didn't allow sugar:)
I do not have a 'Bad case' of diabetes because I have an insulin pump.
I do everything in my control to live a healthy life and my numbers still look like a roller coaster.

Type 1 diabetes is an auto- immune disease, which is a condition that my own body has killed off my own beta (insulin producing cells) leaving my body unable to change glucose (carbs, sugar (its all the same)) into energy for survival. So, we rely on artificial insulin to control our diabetes.

People with Type 2 diabetes produce insulin, but their bodies become resistant to it, so they control their condition by diet, exercise, oral medication and sometimes insulin to control their diabetes.

The results are similar- high blood sugar, or hypoglycemia, leads to life threatening complications.

Historically Type 1 has been referred to as Juvenile Diabetes, but now we call it Type 1 because people of all ages are diagnosed with it and sadly enough more and more youth are becoming diagnosed with Type 2, mainly due to the increase in child obesity, sedentary lifestyles and unhealthy diets.

Take some time to educate yourself about Type 1 (and Type 2) diabetes. http://www.jdrf.org/, http://www.diabetes.org/, http://www.childrenwithdiabetes.com/, http://www.diabeteswellness.net

This will be my 28th year of living with Type 1 diabetes and I am still learning from it. It is a complicated condition and I am doing my best to keep up with it. I have good days and bad days, and all together am lucky to have the support and life that I do- we will continue to educate and fight until we find a cure and make life easier for those living with the condition.