New Yawk Sawse

One thing that has been brought to my attention over the years of advocating for people with diabetes is food prices. I know that it may sound strange, but often while in various groups and committees, the issue of the high cost of healthy eating comes up. Even if you had not realized it before, it quickly becomes apparent that there is a huge problem.  You can purchase 2 liters of Pepsi for $2 but it will cost you double that to buy the same amount of milk.  I paid $13 for three apples the other day (yes they were bigger apples but nothing overly exciting).  I could have purchased four bags of potato chips for the same amount. How can we ask people to work, pay for medications, a roof over their head and healthy food? Unless they have a good income, it can be a real challenge.

This is an issue that has bothered Chef Dennis Sheehan for some time.  He is a New York Chef with type 2 diabetes who had made it his mission to educate people on healthier ways to eat.  He created something called Diatize –a non-profit company that offers culinary advice and meals geared toward Type 2 diabetics and those wanting to eat healthier. “The difference between us and other diabetic-friendly meal options, is that we are cost-effective, tastier and more realistic; meaning real portion sizes, real flavors and food that’s cooked with love and passion.” says Sheehan.

Sharing meals and showing others in his area is not enough for Sheehan however,  ” We want to have a whole food line that’s affordable and fresh that offers an alternative to fast foods. Right now McDonald’s is selling 10 piece Chicken McNuggets for $1.69. its poison and people are eating it up for the price.” Sheehan’s first step towards that goal is the creation of his “Sawse”.

This tomato treat is vegan, gluten free, and low sodium, for those with allergies or sensitivities, and are prodsawseuced without GMOs or unhealthy additives.  It is made with only fresh ingredients and reviews have suggested that it tastes just like the sauce that Grandma used to make but without the added sugar!  The pictures speak for itself.  On the left is a commercially produced sauce.  On the right is Sheehan’s Sawse.  You can easily see the difference in the color and the texture.

While the hope is to one day make Sawse and Diatize’s other products available worldwide through a network of sales people and grocery store chains, at the moment it is being made in an incubator kitchen in New York.

sawseIf you are interested in ordering Sawse, I would encourage you to check out the Support the New Yawk Sawse page.  It also has a great video showing how the process comes together.  Personally, I look forward to continuing to watch Diatize grow and hope that there will be many more healthy, affordable food options available to everyone in the coming years.

The Bad and the Ugly

No longer having children live at home means that I don’t have to worry about school schedules. I don’t have to concern myself with getting teens out of bed that would rather sleep.  I don’t have to make lunches.  There is a great freedom there.

Having children who don’t live with you does not free you from worry.  My oldest son makes a 9 hour journey by car every 10 days to go to work. I stress as he drives home for his days off. I stress as he drives back to return for his next run of work. Some times my worries are even warranted.

The other night he had vehicle trouble. I sat by my phone all night until I knew that he was safe.  I felt bad for him.  He had to get up early for work.  I was able to try to catch an extra hour in the morning….or so I thought.

I have two sons and at 7am I heard from my younger son.  He was vomiting.  What should he do? When my boys are sick, Mom is still the first one that they call.  I asked him what his bg levels were? We needed to know if we were dealing with a tummy bug or a really high blood glucose level.

He told me that he couldn’t check. He was throwing up too much.  To prove the point, he sent me a picture.  You have to love boys!

Eventually his stomach relented and allowed him to test.  No bug, he was high, like super high, like “HI!” from a cheerful meter kind of high!  I hate that kind of high.  We went through the protocol….

Inject yourself with insulin.

Change your site.

Change your insulin cartridge.

Check for ketones.

The protocol took over an hour to complete.  He was throwing up and upset by the mess that was being made.  He was alone in the house and having to do everything himself.  My heart was aching.  This is the bad part of having your children move away.  You can’t take over and let them just be sick.  I continued to walk him through what had to be done.

Sleep was now impossible. I got up as I waited to hear what stage he was at.  Insulin was in. Thank goodness! Now at least his body had something to work with.

New site and cartridge were done.  One more step towards normalcy!

Now to stop the vomiting and get some recovery.  He had no gravol or any other anti-nausea medications.  He did find some fluids and worked to keep them down.

He found his ketone meter.  The results were in the “holy crap” category but just under the “you can’t do this alone. Get to the hospital now!” category. “Insulin and water” he repeated. “Don’t forget the test a lot until you have in range readings and no ketones.  Also, do NOT sleep.”  He told me that sleep was not an option.

We continued to stay in contact.  He continued to take charge of his care and get things sorted. I continued to hate diabetes for making him have to be so responsible at 17. We both survived. That’s the main thing….

vomiting2

Sad to see Dex Leave

Ready to use DexoCom!
Ready to use DexoCom!

As I mentioned, we were privileged to be able to try using a DexCom for seven days over the Christmas holidays. I was super excited. My son however was not exactly thrilled but willing to see what all of the fuss was about.

I am pretty sure I allowed him to put down his suitcase and open his Christmas gifts, but I don’t believe I gave him time for much else before we learned how to start the DexCom process.  I had been encouraged to watch the video a few times before actually inserting the device, so I had my son sit with me as we began.  The video paused and allowed you to do a step before continuing.  This was very user-friendly.

As we reached the insertion stage, my son suggested that we stop a bit and replay multiple times before injecting him with anything!  I agreed.  I was terrified that I would mess up.  Not only are these sites expensive, but we only had one to try and our rep was away enjoying the holidays.  I had to be perfect!

I was finally confident that I should be able to do this. My son was not exactly feeling the same level of confidence but eventually relented and allowed me to jab his body with the large contraption. It was a success! The sensor was in his body and he had not died. I asked him about the level of pain he experienced.  (It didn’t look like a big needle so I never even suggested asking him if he wanted to numb the area–bad mom)  He said it was close to having a site inserted–maybe a little less painful.  I was psyched!

Next came putting on the transmitter.  That was a challenge. I understand that it gets easier with time but I will say that figuring out how to get it to attach the first time took us a bit.  Once it was on, it was time to wait our two hours before the first calibration.  I was super excited to see what would happen.  My son was still not as thrilled but glad to no longer have his mother poking at his belly.

Two hours later we did our first calibration and my son resumed his normal activities. One of the first thing he did after putting in the sensor was to enjoy a nice jacuzzi tub.  The sensor is waterproof but I was still having a mild heart attack wondering if it really could take this.  I told my son that all was fine as long as the receiver stayed dry…but I was still nervous.

Would the jacuzzi mess things up? Despite telling him that he didn’t have to test as much with the DexCom, I made him test a few times just to prove to myself that it really was as good as everyone said.  The research didn’t lie.  The end users didn’t lie.  This little machine was awesome!

The accuracy was not perfect the first few days.  I had been told that the DexCom accuracy was not as great on the high-end as it was on the low-end.  We found that to be true.  When it said he was high, he was often higher still. That didn’t bother me though. It showed me a trend. He was high and going higher (we had a bad site).  It really didn’t matter if he was 15 or 25 (270-450). He was high and needed a correction. A finger stick gave us where to correct from but the DexCom told us if we were on the right track.  For me, the combination was amazing!

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Yes! It really did say he was dropping!

During the trial period, we had extreme highs (First lesson–do not calibrate when high. Since the accuracy already isn’t great, your sensor will be off a bit more than when its calibrated at reading closer to in range).  We also had lows.  The first low my son had while wearing the sensor came as we arrived at our cabin. We were unpacking our gear and of course he couldn’t help.  He was low.

“Really? Is it working? Did it tell you that you are low? Can you feel it? Are you actually low?”  My son scarcely avoided an eye-roll and passed me his receiver. It read low! There were downward arrows! He said that yes he felt low and we treated him.  The DexCom then told us that he wasn’t falling any more.  He could help us get the rest of the gear out of the truck and he would be fine! Oh happy days!

Yes, I loved the DexCom.  As we became more familiar with it, the accuracy also improved. I am not sure if  the sensor was working better with his body or if the increased data that it had to work with through a few days of calibration improved the accuracy but it was wonderful!

At night, I would get up and take his receiver into my room so that he could have a break from diabetes care.  It sat on my night side table and instead of getting up and poking him, I could roll over and watch a graph.  A non-D parent will never know how soothing looking at a graph can be but let me tell you, it was AMAZING!image

There were nights that my partner wanted to throw it out the window.  My son was high.  The DexCom told me so.  We corrected. The DexCom said it didn’t work.  We injected.  The DexCom said he was falling.  We wanted that.  The constant dialogue of beeps and vibrations were sending Larry over the edge while giving me peace of mind.

Not all nights were full of alarms.  The DexCom allowed me to also see my son have some of the best readings.  I watched one night in amazement has he maintained a steady 4.9mmol (88mg/dL) for hours.  Such a lovely number would normally have sent me into a night filled with stress. Would he drop? Would he rise? I would be testing a lot wondering or I would be pouring chocolate milk down his throat hoping to slow down a decline in blood glucose levels.  With the DexCom, I was able to simply relax and  watch a perfect night unfold in front of me.

The biggest gift that the DexCom brought me was pride in my son.  When he moved away to live with his father, we said he would share readings with me and we would talk about his care.  Well, reality was very different and with the exception of “yep, all is fine”, I have had no real information on how he was doing.  When he visits with me, there are often problems due to change in activity levels and eating as much of Mom’s food as he possibly can in a short window of time.

He still ate a decent amount.  He also was a little less active that he might have been at his father’s but his readings were generally quite good.  The DexCom showed us a few issues–some of which he knew about but hadn’t dealt with. Together we talked about changes.  He challenged me about some ideas and after a discussion, we made the adjustments that we both felt were required.  I was proud to see that he had listened to what he had been told over all of these years.  He was taking ownership of his disease and doing a good job of it.

I was sad to see day 7 arrive.  It was the end of life with a CGM.  It also meant that my son was heading on a plane back to school and his other home.  The last part was the hardest but it also hurt that he would be leaving without this amazing technology.

I asked him what he had thought about the whole thing.  Once again, he was not impressed with the extra site. I think he quite enjoyed being able to simply look at a graph to know what to do about his readings–he was rising, he was falling, he was nice and steady.  He is not quite ready to carry a second device however nor is he ready for a second site.  I see that changing in time.

Our rep kindly offered to let him use it again in the near future if he wants.  I am sure we will take her up on that offer.  I can see his attitude towards the DexCom changing with both use and the changes in his circumstances–moving from the classroom into the workforce.

I was always a firm believer in the benefits of this technology.  This one week trial just confirmed it.  Anyone living with diabetes should have access to this device.  It will change their lives and improve their diabetes care.  A running live-stream movie of blood glucose readings rather than snap shots throughout the day offers such incredible freedom and peace of mind. It should be a standard of care for everyone who has to live with diabetes.

 

Sleep Guilt

I put my son on the plane back home the other night.  He had been visiting over Christmas and it was time for him to head back to school.

When he first arrived and we sat down to our first meal together, it struck me how much I had forgotten.  Well, not exactly forgotten but as I stared at his plate and mentally counted the carbs, it was not done as quickly as it had been before.  The numbers that were once computed in a fraction of a second, took time to ponder, add and re-add to ensure that I had them correct.

It was still habit to compare carb totals.  I still reminded him to check his blood glucose readings and suggested pre-bolusing for meals. Some habits don’t die but still I was shaken to realize how out of practice I had become while he had to be as sharp as ever.

I worked to step back a bit more.  This is his disease. I can make suggestions but he has to take the actions….and he is.  A first night with the DexCom showed me that my fears were not exactly warranted.  Yes, there were trouble areas, but my son had a far greater handle on things than I realized.  He had paid attention to at least some of those years of training.  He was slowly coming into his own and developing his own style of care.

He made mistakes.  We all do.  We bounced ideas off of each other. No changes were made to his regimen without his input.  I was proud of his questions and his answers to my questions.

On the final day, just before we left for the airport, we took out the trial DexCom sensor that he had been wearing. Its accuracy was becoming near perfect. It hurt us both to take it off (him more than me because it was caught on a few belly hairs).

Before he went through security, we stopped at Tim Horton’s for one more chat before he left.  He had to test before he ate. He could only guess if he was rising or falling.  His life was going back to his normal and so was mine.

Out of practice stabbing the child so I stabbed myself instead :o
Out of practice stabbing the child so I stabbed myself instead :o

As I drove away from the airport, I felt terribly sad and guilty.  I got to drive away.  I didn’t have to think about carbohydrates until the spring.  I didn’t have to stab myself with another infusion set needle until Easter. I didn’t have to be up all night again chasing highs and a questionable site.  I was going home without diabetes–he wasn’t so lucky.  Diabetes wouldn’t let him go it alone.

I know that its foolish to feel that way. There is nothing that I can do. I couldn’t protect his two-year-old little body from attacking itself all of those years ago. I can’t fix him today.  I can offer access to information.  I can be there to help when I can. I can advocate on his behalf but I can’t carry his burden.  It’s a job that is his alone.  He does it quietly and without fanfare. That’s just his way…but I am his momma and I still wish I could make it go away.

If its not sexy, how to we make them care?

Its something that has really been plaguing me the last few days…how do we make people care? How do we help them to get it? Many people sympathize with all of the challenges that goes into dealing with diabetes.  Some people will look wide-eyed and dazed as they realize all that it entails but very few truly understand the serious and overwhelming nature of this disease.  In order to receive better funding for research or support with devices, its vital that common people understand but how do we do that? I hope you can help me with that.

My son was diagnosed with type 1 diabetes almost 15 years ago.  Before his diagnosis, I didn’t get it. I knew one child growing up who had the disease and knew one person as an adult who had type 1 diabetes.  She had to watch what she drank and could only use diet 7-up for her drinks.  That was the depth of my knowledge.  Today  I am a walking encyclopaedia.

We don’t need the general public to have as much knowledge as those of us living with diabetes.  We don’t need government officials who understand the ins and outs of the disease either but we need a greater empathy and understanding.

For years I have shared stories. I have given people the scariest moments to ponder. They have watched as my son ate meals at regimented times or devoured food with the voracity that only a teen can do followed by a large bolus of insulin. Despite that, I can hear in certain comments and see in various facial expressions that they still don’t really understand.

They think I worry too much…and maybe I do.  They don’t understand the costs associated with the disease–emotional or financial. They cannot begin to understand having to spend thousands of dollars each month just to stay alive–we have insurance that covers that right?  Obviously we have over dramatized things–they aren’t really that bad are they? Wrong.

Some people understand the freedom offered by a pump but fail to understand the importance of a sensor. The cost seems ridiculous when you can just lance your finger and have it done with. They don’t understand how important it is to “see” what is happening inside the body and to be able to anticipate and react to problems as they happen rather than later.

How do we make them understand? How do we make loved ones who don’t deal with this 24/7 truly comprehend what a person with diabetes goes through on a daily basis? How do we convey the stress and worry that they carry with then all of the time? How do we make an invisible disease visible and serious to those around us without the loss of limb or life? How do we remove the blame and create understanding?

These are real questions and I am looking for real answers. How do you handle these issue in your life? Please share them with me.  I would like to be able to use new and more effective techniques as I continue to advocate for my son and others living with diabetes. I would like to see the world come to a better, more real understanding of what people go through so that they can be more kind and more thoughtful to those living with diabetes.  That is my goal for 2015. Please help me to reach it. miss-idaho-insulin-pump-instagram-doodle__oPt