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Far too many are dying.

All it takes is one simple test.

A finger poke that costs rarely more than $1 retail.

Only $1 to save a life.

Isn’t that money worth spending?

Amanda says it so well in her post linked below.

Why We Can’t Afford to Ignore the Symptoms.

 

…the phrase irks me.  Pet peeve maybe?

No one food is more “friendly” than another.  Healthier, perhaps, but friendly is a personality trait not a food description.

Should you eat that hamburger using glazed donuts as a bun.

With or without diabetes, probably not.  Especially not on a routine basis.

For me, if someone wants to make a claim that something is diabetes friendly, provide us the nutritional information.

Especially the carb counts for the serving sizes.

In restaurants.

For recipes.

Pasta, rice, macaroni and cheese companies…I’m looking at you too.

With that information, anything can be “diabetes friendly.”

It’s about moderation, not deprivation.

Click the image for more information about Diabetes Blog Week or to join.

Sunday: As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you.

Wendy at Candy Hearts and her petition to the Voices in my Heads directing them to just.shut.up. I am my own worst critic and this was a great reminder that I need to give myself more credit.

Paul at Type One Fun for making me remember how overwhelming it was in the beginning and the importance of celebrating the milestones, even if they are baby steps.

Danielle at Wife Mom Pancreas because not only did the earrings make my giggle but her post served as a reminder that I deserve my creative outlet. I am always creating in my head but somehow I do not give myself permission to actually create anymore. It’s time to dust off the paint brushes and do it. Hopefully Allen doesn’t mind our walls turning into an Art Salon

There are so many other posts and blogs I wish I could mention. I think I just might do that, even after blog week is over.  Because there are so many great posts that deserve a response.

Click the image for more information about Diabetes Blog Week or to join.

Saturday: This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

Pod Art by Annelies




Click the image for more information about Diabetes Blog Week or to join.

Friday: Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

If you could switch chronic diseases, which one would you choose to deal with instead of diabetes?

The initial thought that comes to my head is NONE, THEY ALL SUCK! But I guess that wouldn’t be in the spirit of Blog Week. In all honesty, I don’t know a lot about other chronic diseases. A little of this and a little of that, but nothing like the knowledge I have about diabetes. I’m not going to name a chronic disease that I’d rather switch to, to me that seems like I’d be saying that they have it easier than people who live with diabetes do. That would seem a little unkind to me. But I will say that if there is one that only involves remembering to pop a little pill once or twice a day and then forget about it until the next dose, please sign me up.

And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

No, absolutely not. One does not need to live with a chronic condition in order to have compassion for or give respect to others living with medical conditions. I will say, though, that perhaps I do have better empathy, even as a caregiver, of the emotional and physical tolls that it can take on a person.

Click the image for more information about Diabetes Blog Week or to join.

Thursday:
We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

I guess today I get to toot my own horn.

At the time Annelies was diagnosed (March 2008), I was a career federal service employee. When I was at work the girls were elsewhere on post in School Age Services (after school care). While she was in the hospital we learned that before her return to their care, we had to have something called the Special Needs Accommodation Process (SNAP). It was our first realization that our child was now considered “Special Needs.”

Long story short, we learned that outside of helping her to check her blood sugar and providing the nutritional information for meals and snacks, their hands were tied to do anything else, especially dosing insulin. This was the supporting regulation:

AR 608-10
4–32. Administering medication and Performing Caregiving Health Practices

On occasion, CDS personnel may be required to perform health related practices as a reasonable accommodation for children with disabilities (special needs), pursuant to the Rehabilitation Act of 1973, as amended. These specific caregiving health practices are usually outlined in the child’s Individual Development Plan (IDP) or the Individual Family Service Plan (IFSP). Such practices may include, but are not limited to, administering oral medications in addition to those discussed in paragraph 4–32c below, hand held or powered nebulizers, clean intermittent catherization of the bladder, gastrostomy tube feedings, or assistance with self–care for medical conditions including glucose monitoring for diabetes. However, CDS staff and Family Child Care providers will not perform functions that require extensive medical knowledge (e.g., determining the dosage or frequency of a prescribed medication); are considered medical intervention therapy (e.g., those not typically taught to parents by physical, occupational, speech therapists or special educators as part of a home program); or if improperly performed, have a high medical risk (e.g., injection of insulin).

They couldn’t dose insulin, not even Glucagon.

During the school year, this really wasn’t an issue, in the beginning she had an uncovered snack after school. But during the summer after school turns into all day care in a day camp format where she would be eating lunch there, she needed insulin but they couldn’t give it to her. I had to alter my lunch (half) hour to travel to the center and dose her insulin. A little inconvenient but do able. Where it did become an issue is that they had a weekly field trip with packed lunches sometimes as far an hour away. For her to able to attend, I would have to take off work and go with them. Unfortunately it wasn’t an option, there is no way my supervisor would have agreed to it, even if I had the leave balance. She would have to stay behind and it wasn’t fair.

This was before I found a support board and before I found the DOC. So I turned to the Military Yahoo Group, I asked them if anyone had run into this and what do they know. The responses were along the lines of ‘it is just the way it is’ and ‘you can’t take on the Army.’

And I got mad and I said to myself ‘watch me.’

And so I submitted a letter up through the chain of command and in my 24 page request (3 page letter and 21 supporting documents) I asked for 2 things:

  1. An exception to policy for Glucagon Administration and self-medication with assistance, so that she could fully participate safely in the program.
  2. Review of the current regulations, policies and practices in place.

And I sent it on its way 1 June. And we waited. And waited. And she missed out on the fun field trips. And it broke my heart.

One day in late October, we got this in response

And I was Snoopy Dancing! I won! Well, I sort of won.

There was now a policy in place but staff still couldn’t:

  • Count carbs, but I could get the menus and have it figured out for them to measure.
  • Give insulin or Glucagon. BUT they could supervise as she self-medicated.

By this time, she was using an insulin pump and the response we did get back was enough to meet our needs, especially to ensure that she would no longer be left behind on field trip days.

I wasn’t ok with the no Glucagon thing. It made me angry that if she needed it, the staff had to stand there and watch while an ambulance was called. It made the staff upset that they were being told that they weren’t allowed to intervene in an emergency for a child they had grown to love. So a teleconference was set up with faceless people in charge in various departments of the Army. I’ll spare you the details, but it got ugly. I tried to be ‘how can we fix this’ and ‘how can we get this changed’ but all I was met with ‘it’s policy’ and ‘do you realize there are many other lifesaving interventions we can’t do.’ That last one was when I flipped. I didn’t care about the others, I told them, and they were not my battle. In all honesty, all I remember is that I was seeing red and it was beyond ugly.

But I wasn’t done yet. And the staff of her after school care and the other personnel on post said ‘keep fighting’ ‘you are right’ ‘be a catalyst for change.’ Their hands were tied by policy but they thought it was wrong and wanted it changed too.

During the time I was awaiting reply for my exception to policy request, I had contacted the Legal Advocacy Department of the American Diabetes Association. They put me in touch with a Disability Rights lawyer. I chatted with her and she thought we had a strong case if we I (because my active duty soldier husband could not sue his employer) decided to sue the Department of the Army on our daughter’s behalf. She would be happy to represent us and give us discounted rates. I still had one more avenue I wanted to exhaust but could I please keep the option open? Of course, she said.

So I submitted an issue to be reviewed at the next Army Family Action Plan (AFAP) conference

Issue Title: Glucagon Administration for Diabetic Youth in CYSS Care

Scope:

  1. Current Army policy prohibits CYSS staff from administering Glucagon in an emergency; a first responder must be called to administer for a severe episode of hypoglycemia in diabetic children within their care.
  2. Glucagon is a life-saving, injectable hormone (which is a naturally made in the pancreas) that raises blood glucose levels by stimulating the liver to release stored glucose; it is not harmful nor can an overdose occur. Glucagon is required when other treatments cannot be used due to unconsciousness and/or seizures.
  3. The prohibition of Glucagon administration affects all Diabetic Youth within CYSS care. A severe hypoglycemic event is a situation can turn dangerous quickly; resulting in coma, brain damage or death.

Recommendation:

  1. In spite of careful attention with blood glucose monitoring, the infrequent need for glucagon could occur. Those who are responsible for a child within a CYSS setting must be able to provide this needed service.
  2. Army policy should be revised to allow the administration of Glucagon in an emergency by CYSS staff.
  3. CYSS staff should be trained at the same level as the training for Epipen (an emergency intervention allowed for allergic reactions). At least one staff person trained to administer the glucagon must be available any time a child requiring this emergency intervention is in care, including during activities away from the facility.

I had volunteered the previous year and I loved being a part of the process. It was awesome. So I had volunteered and was chosen the following year also. The size of the group is dependent of the number of issues that have been submitted. Normally the submitter of an issue is not part of the reviewing group. Lucky for me, there were few issues submitted this year, but I told myself that I needed to detach myself and let the process work.

They came to my issue and I tried to bite my tongue. I was too emotionally connected, I reminded myself. But they didn’t understand. I didn’t expect them too. I looked to the staff in charge and she nodded her head in permission. I reached into my purse, pulled out a Glucagon kit and revealed myself as the submitter of the issue. I explained the history of what I had done and why this was so important. They passed around the kit. Someone looked at me and asked ‘so she could die while waiting for an ambulance to arrive.’ Yes I confirmed. They asked for the Subject Matter Expert (SME), who was the director of CYSS (and one of my biggest cheerleaders) and they questioned her. And they decided that this was important to them too and it was elevated to the next level.

I had done well keeping the tears at bay during it all but I failed when it came time for the Commander’s Brief. The Post Commander attends at the end of the conference to be briefed on the issues. I didn’t say a word, I didn’t have to the group briefed him and did so well at it. In all honesty, if I had wanted to say something, I was too choked up with emotions to even try. After the brief, the Post Commander said that he remembered when my exception to policy had come across his desk. And that he thought it was important then and it is still important now. And he signed off on it moving up to the next level.

At the U.S. Army Reserve Command (USARC) level my issue was not prioritized as a top issue to move up to the Department of Army level. But it reached someone’s attention, because

Glucagon Injection for Diabetic Youth in Child, Youth, and School (CYS) Services Care (2010-04): This issue was sent to U.S. Army Reserve Command (USARC) level for the June 2010 AFAP Conference. The issue was not prioritized as a top issue to move forward to Department of the Army and was returned to Fort McCoy. Medical Command now has recommended that glucagon be permissible to administer in CYS Services, providing that the appropriate training is completed and documented. The issue was deemed complete.

This is my proud accomplishment. I was told you can’t take on the Army, but I did and I consider this a win.


Click the image for more information about Diabetes Blog Week or to join.

Wednesday: Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

I really wanted to post about something happy and positive, but my mind keeps directing me to this very scary memory.

It started as a beautiful summer day. We met up with some friends of ours at the Chicago Botanic Garden. It was so hot out. The water play in the children’s garden was great fun as they chased each other around with the water bottles meant to water the plants. The butterfly house was neat, unless you were Katy. She was not impressed with all of the flying insects. It didn’t matter how pretty they were, she wanted out.

We were headed back to the visitor’s center when Annelies said her tummy hurt. Tested and she was 90. Dexcom was reading a right arrow. Figured it was from the heat but she thought she needed some quick carbs. Even if technology says otherwise, we listen to what her body is telling her. Box of Nerds and continue into the center to grab some drinks. We had just finished paying when she starts saying that she can’t see. It was all black. And then she can’t hear. And then she wilted onto me and passed out. Allen quickly drug her off to the side and thankfully we were able to finally get a bit of response from her. Barely. When the straw of the juice pouch was brought to her mouth she reflexively drank from it.

All around us staff are buzzing… do we need anything…should we call security… do you need an accident report… do you need a Band-Aid.  I don’t know how many times I said she has diabetes, we have to get her blood sugar up.  No, we are not moving her.  After she finished the juice pouch, I ran to buy an apple juice…there was a long line… but staff member says, ‘just take it, don’t worry, and go.’  I struggle to get it open and finally she’s drinking it… I try to give the hovering supervisor money but she refuses to take it “don’t worry about it” she says to us. The staff was just as freaked as we were but they were amazing.

Never ever, have I been so frightened in my life.  My mind raced 100mph through the checklist filed away in the back of my brain. But I couldn’t remember where the Glucagon was.  The same places they have always been and my mind was a blank. Two on hand (one in her kit and one in my purse) but I was clueless to their location.  Before she came to, I thought this is it, a Glucagon that won’t make it past its expiration date and the first time I’ll have to call 911.   But she did come to and we didn’t have to do either. Even though my mind was cluttered and freaking out, I thought was calm. Wrong. I couldn’t even put a test strip in her meter, I was shaking so badly.  And even then, I put the blasted strip in upside down.  Retest after the nerds, juice pouch and half a bottle of apple juice she was only 95. She had dropped and dropped fast, her Dexcom couldn’t even keep up with her. Just before we retested to make sure she was staying up, then Dexcom started alarming under 55.

I felt like I could have prevented all this. That I did something wrong. I could have made better decisions during our outing. Most of all I felt that I failed her.

Later, after a few good cries, including blubbering call to my mom, we tried to process it all. To figure out a reason why. Possibly it was a combination of the heat, insulin on board from her snack and the chasing each other with the spray water bottles in the children’s garden.  On paper, we did everything we were supposed to but it still happened.

The hardest part of it all was trying to remind myself that it was not my fault. I am not a pancreas, I am only doing my best to mimic one. That it was diabetes fault.

But I still wonder, maybe if I had done something different, this would have never happened.

And here is today’s actual submission to catch up for Diabetes Blog Week.

Click the image for more information or to join.

Tuesday: Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?

If I were to write a petition, I would want to address it to Congress and express my great concern over the varied and lacking Glucagon Intervention laws by individual states to ensure that Children with Diabetes are safe at school. I would ask for support in the creation and passing of a law enacting Duty to Rescue along with Good Samaritan protections to those who render aid in these time sensitive emergencies at the federal level.

I would explain that Glucagon is an emergency medication used treat severe hypoglycemia that may result in seizure, loss of consciousness or when a person cannot consume any form of sugar by mouth. Glucagon must be administered quickly, prolonged unconsciousness may be harmful. Many states do not allow the administration of Glucagon by non-medical personnel due to liability concerns. Many schools which fall under these state laws, do not have medical personnel on staff.

During the school day, the school has the obligation to act in the best interest of the students. To not have adequate personnel on staff or to withhold Glucagon while awaiting for an emergency responder places the child in imminent danger. Withholding lifesaving medication is not in the best interest of the student, it is medical neglect. I think that with enacting a federal level Good Samaritan law with the duty to rescue of school staff, liability concerns would be moot as the person rendering lifesaving assistance would be protected.

In Germany, under law, a citizen is required to render assistance in an accident or general danger. As long as they are acting in good faith, they are exempt from legal ramifications. First aid kits are a required item in each vehicle and many are built into the car so it’s not sliding around in your trunk. There is no reason that there can’t be a similar requirement in the United States, especially in a school setting.

Over the years, I’ve lurked and read through the wonderful posts submitted during various Blog Weeks. I’ve decided to take the plunge and join in this time. So playing catch up today before I go to read the wonderful words/thoughts on these topics. You can click the image to connect into this year’s topics and links.

Monday: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

I love my daughter’s Endo and CDE. With the exception of one appointment, they have been with us since D Day and I truly love them like they are part of our family. Our team is focused on quality care and do not quantify us into getting in as many patients as they can for the day. When we got our military orders moving us 270 miles away, the only reason I cried was because I thought we could no longer have them as part of our care team. So with this prompt, I have to focus on our experience with the “local” Endo.

You would think that moving to the Chicago area, we’d have tons of Pediatric Endo’s to access. I thought that too, until we were given a referral to Milwaukee. Insurance only had the one option for us. So I started the process to transferring into the new practice. Red tape after red tape. They wouldn’t even discuss setting an appointment with us until after they had her medical records from our previous team. Week after week, call after call, I was about to lose my temper, I was finally able to set the appointment time for 4 months later. This would put us at the 6 month mark since we had last been seen. Even though this annoyed me, I didn’t stress too much. Awesome Endo/CDE were always accessible to us during this time.

Finally the day of our appointment arrived. We were met with tons of new patient paperwork. Then we started through the process of appointments. After what seemed forever we finally met our new Endo. There was no getting to know you, there was no personable discussion with my child. The first thing he discusses with us is that her A1C had gone up 0.5. The number was actually still respectable. We expected that and in all honesty, we were ok with it after the stress of a move, new school transitions (recess before lunch was difficult for us to figure out how to tackle) and we were doing it all on our own. I said he discussed this and that really isn’t the truth. A discussion to me involves a two way discussion. In actuality, he lectured us about the long term damage, causing tears to form in my daughter’s eyes. He then started to demand that we enroll in a pump class. I explained that we had been pumping for 2.5 years and I wanted to know what was taught in the class. I wasn’t closed minded to attending, but it would seem silly to waste time, insurance charges, transportation expenses to attend something giving information that we most likely were already utilizing. He was adamant that we were doing our child a disservice with her A1C. I tried to explain that we have been looking at patterns and do not see where we can make changes. He continually dismissed me, refusing to look at the logs I had printed for our visit. Finally he relented and glanced at the papers, barely looked back up and said he didn’t see any patterns either. Just leave them as they are and we will revisit it at her next appointment. Muttered again about pump classes and told us the nurse would be in to finish the appointment.

What do I wish they would have seen with that experience?

That I am not an idiot. At the time of the appointment, we had just passed the 3 year mark of living with diabetes. We had been pumping for 2.5 years. My child is sitting in front of you, she is a silly girl, happy and healthy. Most of all, she is alive. I’d successfully kept her alive for those 3 years. Don’t lecture me on her A1C if you can’t offer advice on changes because you don’t see a pattern either.

Get to know your patients. Do not act like I need remedial training when you haven’t taken the time to even get to know us or the unique circumstances that sets us apart from other families. Not saying that we’re more different from other families, well maybe I am. Because EVERY family/person living with diabetes has individual needs. It cannot be compartmentalized and one way does not work for all. It doesn’t even have to take a long time, I know you’re busy and see a lot of patients. But when you walk into the exam room, you should establish a trusting baseline relationship with your patient/family. Bedside Manner 101.

My child is a person. Don’t talk like she isn’t in the room. She is the one who lives with this disease. Right now is the time to act like you even care and that she is more than a paycheck. Treat her with respect and help us by acknowledging that she is important and not just diabetes.

Answer my questions. This is especially when you have a new/transferring patient sitting in front of you. If I ask about your sick day protocol, don’t tell me I need a class. No, I just need to know how it works in your practice. If I ask about accessibility, I’m not asking because I want to call or email all the time. If I do call or email, it is because I need help. Don’t act shocked that a 72 hour turnaround time is not acceptable to me.

That I’m not afraid to fire you. I left that appointment in tears. And then I got angry. Plan of attack formulating in my head. First action, get appointment with PCM to get referral changed. To who, I didn’t know, but I didn’t care at that point, I was never going back there.

And we didn’t go back there. Ever. We were lucky that our previous Endo was still available to us under our insurance. The only downside is that we would have to travel 270 miles each way for the appointments. Travel expenses, every last penny of them are worth the quality and humanized care that receive at our destination.

To the place that acknowledges that:

  • Drilled into us “Kid First” since day 1.
    • You have candy for breakfast on Easter Sunday? Let us show you how that can still work.
    • She loves cotton candy? Let me show you a trick on how to eyeball a carb count
  • Treats us as a partner in her care
  • Takes into account that we are trying the best we can and we’re not perfect
  • They don’t claim to be perfect either but they never stop trying to figure things out WITH us
  • Burnout happens and it doesn’t result in a negligent label. Instead it is ’email us when you need us’ because…
  • We’re here to help. I think this should be top rule for any health care provider.

Will She Get Better? Soccer mom asked at our recent game.

But, I didn’t find myself getting upset at the ignorance. She was sincere and I could hear the hope in her voice.

“No,” I answered, “it will never go away. But we get better at it.”

The mom between us just nodded her head in understanding.

She replied that she knew it wasn’t the same as the kind her dad has, but she was hopeful.

And she asked about her devices.

And she listened attentively.

And then we went back to the cheering on our girls in the game.

 

I understand the knee jerk reaction in responding to ignorance.

Especially when they are accusatory.

Those especially sting, because I know that even I searched for a reason in the beginning.

I wanted to know why and 5+ years later, I still don’t have that answer.

But I think it is important to remember to not go on the defensive anytime someone asks a question.

It gets old, I know.

But take a breath and evaluate the motive. Think about your answer and how you will deliver it.

Not everyone is going to blame you.

And the ones who do. Deliver with a little snark.

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