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.

I’ve taken some time off this past week because I’ve been enjoying a visit from my parents. One of the huge checks in the Con List of living military is distance from family. Not a day goes by that I don’t miss them. It is something I’m used to but I still don’t like it. When Annelies was diagnosed, the distance was even more magnified and for the first time, I began to resent it. The opportunity to spend Mother’s Day with my mom, just awesome and thus the reason for the crickets here.

Last week, in my email, I was touched to be nominated by Paul for this award. I’m just beginning to get to know him through his blog and I’m glad to follow him. In the path that is Diabetes, support is as necessary as insulin. Even though he is a recent diagnosis and I am a mom of a child with diabetes 5 years since diagnosis, support is something we can offer each other, even if our perspectives are a little different.

Rules for this award:

  • Thank the Super Sweet Blogger that nominated you
  • Answer five super sweet questions
  • Include the Super Sweet Blogging award image in your blog post
  • Nominate 12 other bloggers

Time for the 5 sweet questions:

  • Cookies or cake? This is a tough choice. For as long as I can remember, my mom has made me German Chocolate Cake for my birthday. But I’m not a huge cake lover, truth is, I am only in it for the Caramel Coconut Pecan frosting. So I am going to have to choose cookie. Hopefully it’s a thick soft chewy oatmeal raisin one.
  • Chocolate or vanilla? It drives my girls nuts that I’m not a huge chocolate fan. I’ll choose vanilla any day, hopefully with warm ooey gooey caramel topping. I’d happily accept butterscotch topping too.
  • Favorite sweet treat? Snicker’s bar. I’ve eaten one in every country I’ve ever visited. (Yes, they do taste different in each place.) Snickers have even been brought back to me by others who have traveled to places I have yet to roam.
  • When do you crave sweet things the most? Oddly, in the evening time. Currently working through a stash of jelly beans.
  • Sweet nick name? The sweetest? Mommy.

My 12 super sweet nominees:

  1. LivingLikeLinds
  2. KDA not DKA
  3. Life with My Giggly Girls
  4. Bringing Up the Rare
  5. Golden Eye Images
  6. What Jew Wanna Eat
  7. Yammie’s Noshery
  8. The Kitchen Life of a Navy Wife
  9. Kayotic Kitchen
  10. Epbot
  11. Army Wife 101
  12. Budget Bytes

Thanks again, Paul, for bringing a smile to my face with this nomination.

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.

I have tried to discuss this with your customer care representatives, but apparently they are just as clueless about this transition as me, your customer. Just to make sure we’re on the same page, let me share a brief backstory.

Knowing that my daughter’s pump warranty expired in the Fall I tasked her to start researching the next pump she wanted. I had decided to allow her to do this because what feature might be important to me might not be for her. She is the one who wears it 24/7. She poured over the mailed literature, she explored the websites and she finally decided on the Omnipod.

So I asked her, what makes that one better than the others.

“No more tubes.”

Tubing had never seemed an issue before but about ready to enter Junior High, it was an issue now.

What else could I say to my daughter who is on the cusp of adolescence but ok?

So I filed away her choice and was ready to wait until our warranty expiration.

But then your Sales Rep called to follow up on our inquiry. So I told him we had to wait until September.

And he told me about your Cut the Cord Rebate.

And that if we were to switch over, we would be automatically upgraded to new system as soon as it came out.

And I believed him. Boy am I a sucker.

Why I am irritated

I actually think I’m tip toeing into the anger department.

We decided to pay that $149 on a promised from a representative from your company. And it was a lie.

$149 that we didn’t have to spend. We’re pretty lucky, we have 100% DME. Had we waited just a few more months, we would have had no out of pocket expense.

But we paid it, to be first to get our hands on the new technology. Reserve our spot.

Because we were told that was how it was going to work.

Of course, had we made the switch in September, we’d still be on the list.

But that $149 would still me mine.

And do you know what really chaps me?

You are still lying to your customers.

Look here, remember this? It is on page 2 of the Patient Information Form we filled out.

Do you see #12? The one that says “Have your communication needs met.”

You told me that this was my right as a customer. It certainly is not happening.

When you updated your website, you stated you expected to begin shipping late February to end of March.

Don’t worry you assured me.

Come April, nothing. So I inquired and your customer care can’t figure out where I’m getting my information.

Well, at the website. Apparently you’re not telling them anything either.

So I sent an email inquiry. It was ignored.

But you finally updated your website on 8 April.

Now it’s “over the next few months” to transition. I guess you got tired of the irritated customers.

I’ve been patiently waiting and here we are due for an order.

It must be time for our transition. After all, you’ve told me not to worry, I’ll receive plenty of notice.

But I haven’t, so I call, because maybe I’ve slipped through the cracks.

Now I’m told they think it will happen in about 6 months. You realize this will put us to almost the year point from the big FDA approved it announcement.

Can we please just get a truthful answer?

After all, you told me, that is our right.

We are a news watching family. Every morning, it is on as we get ready for the day. When tragedy strikes, we do limit the ongoing coverage. That can be too much for even an adult.

After all as a parent, it is my job to protect my children.

Upon diagnosis, as we learned the harsh realities of “complications” we tried our best to hide the scary part of diabetes from her.

Excuses of age appropriateness etc. justified it for us.

But.

We learned that she knew so much more than we had shared with her.

She didn’t need to be told, she made the connection of the necessity of always carrying the Glucagon and the importance of her MedicAlert bracelet.

At age 6, not too long after her diagnosis, she proudly showed me this drawing.

It broke my heart.

In my hands was not another mermaid, puppy, or rainbow picture.

It was proof of her awareness of her mortality and the role diabetes played in that.

It was proof that I couldn’t turn it off and make it go away.

It was proof that I can’t just kiss it, put a Band-Aid on it to make it better.

It was proof that no matter my best efforts, I couldn’t protect her.

It still breaks my heart, but I keep it to remind me that our kids are so much smarter than we give them credit.

In yesterday’s post I shared the policies in place that serve as an obstacle for anyone with diabetes wanting to join the military. You may be saying to yourself, but I have heard of people in the military serving successfully with diabetes. And that would be true. Examples here and here. Both were diagnosed while already serving. Both had to go through a Medical Evaluation Board which determined if they would be allowed to stay active duty. Keep in mind both are the exception and not the rule.

But what about a waiver, is it possible to get one to join? I believe it is highly doubtful that any branch will make an exception. If something changes, I’ll be sure to let you know. You can and should always follow up with a recruiter.

But there are other ways to serve our country without having to join the military

Some include:

AmeriCorps: http://www.americorps.gov/

Federal Civil Service: https://www.usajobs.gov/

National Oceanic & Atmospheric Administration (NOAA) http://www.careers.noaa.gov/index.html

Peace Corps: http://www.peacecorps.gov/

Teach for America: http://www.teachforamerica.org/

State Department: http://www.careers.state.gov/

The State Department does require a medical clearance.

These are just a few examples. There are far too many agencies to list.

You can explore more at the US Government Official Web Portal

This is a question that comes up often. It especially breaks my heart when the question involves an older child who has dreamed of joining the military. I wish I was able to answer anything besides what will follow.

The short answer is no.

I truly hate saying that, especially you found this page in hopes of finding otherwise.

I’m not going into the why behind it not being allowed… I honestly don’t have the answer, but…

…my best guess is that it has to do with this listed in DODI 6130.03

(4) Medically adaptable to the military environment without the necessity of geographical area limitations.

Listed are the policies that define Diabetes as a restriction or, as in the case of the Coast Guard, subject to further review.

Department of Defense Instruction 6130.03: Medical Standards for Appointment, Enlistment, or Induction in the Military Services

It is a comprehensive medical list that are grounds for rejection for military service.

Specifically for diabetes is found on page 40.

25. ENDOCRINE AND METABOLIC

b. Diabetes mellitus (250) disorders, including:

(1) Current or history of diabetes mellitus (250).

(2) Current or history of pre-diabetes mellitus defined as fasting plasma glucose 110-125 milligrams per deciliter (mg/dL) and glycosylated hemoglobin greater than 5.7 percent.

(3) History of gestational diabetes mellitus.

(4) Current persistent glycosuria, when associated with impaired glucose tolerance (250) or renal tubular defects (271.4).

Army (Active Duty, Reserves & National Guard)

AR-40-501 (Standards of Medical Fitness) (page 6)

2–8. Endocrine and metabolic disorders

b. Current or history of diabetes mellitus (250) does not meet the standard.

Navy (Active Duty, Reserves & Marines)

NAVMED P-117

15-56 – Endocrine and Metabolic Disorders

(2) Current or history of diabetes mellitus (250) is disqualifying.

Air Force (Active Duty, Reserves & Air National Guard)

AFI 36-2002

Section 1B – Minimum Eligibility Standards

1.4. Enlisted Program Requirements. Applicants must meet specific enlistment program requirements announced by HQ AFRS, and:

1.4.1. Meet physical standards in Army Regulation (AR) 40-501, Standards of Medical Fitness, and AFI 48-123, Medical Examination and Standards.

AFI 48-123, Medical Examinations and Standards

5.3.16.4. Diabetes insipidus, requiring antidiuretic hormone replacement therapy.

5.3.16.5. Diabetes mellitus, diagnosed, including diet controlled and those requiring insulin or oral hypoglycemic drugs. Note: The criteria for the diagnosis of diabetes consist of (a) diabetic symptoms with a casual glucose greater than or equal to 200 mg/dl, (b) Fasting plasma glucose greater than or equal to 126 mg/dl, or (c) 2 hour plasma glucose greater than or equal to 200 mg/dl during an oral glucose tolerance test (OGTT). The diagnosis is considered provisional until confirmed by any of these methods on a subsequent day. Values for fasting plasma glucose greater than or equal to 110 but less than 126 mg/dl are considered to represent impaired fasting glucose; 2 hours post-prandial glucose levels greater than or equal to 140 but less than 200 mg/dl represent impaired glucose tolerance.

Coast Guard

NVIC 04-08 Medical and Physical Evaluation Guidelines for Merchant Mariner Credentials

193 Diabetes Mellitus requiring Insulin or history of DKA: Internal Medicine consultation documenting interval history, blood pressure and weight, evaluation of fasting plasma glucose; and, two current HgA1C’s (<8.0) separated by at least 90 days, the most recent no more than 90 days old, ophthalmology consultation, graded exercise test.

194 Diabetes requiring Oral Medication Internal Medicine consultation documenting interval history, blood pressure and weight, evaluation of fasting plasma glucose; and, two current HgA1C’s (<8.0) separated by at least 90 days, the most recent no more than 90 days old, ophthalmology consultation.

But in the admissions for the Coast Guard Academy, diabetes is listed as a “common disqualification”

Service Academies

Army: Must pass a Department of Defense qualifying medical examination.

Air Force: Must meet the medical standards of the United States Air Force

Navy: Listed as a disqualifying condition in Appendix A: Medical Considerations for Admission

Coast Guard: Diabetes Mellitus is listed as a “common disqualification”

Part 4. If you missed them: Part 1, Part 2, and Part 3.

The consensus, no matter if you support or oppose the petition, is that education is the key. No argument from me, we need education.

But.

Lots of money has been invested in education and public awareness.

JDRF spent $39.9 million on Public Education in 2011.

ADA spent $56,086 on Information and $45,018 on Advocacy & Public Awareness in 2011.

That is a lot of money. I didn’t dig further back into their financials, but I would guess that the figures are similar.

Wow, lots of money that has been mostly raised by dedicated and passionate volunteers.

I can’t imagine how much time and energy from those actually living with diabetes has spent on educating the public. If you could convert it to currency, I bet it would be just as much. If not more.

But.

We are spinning our tires on the education front. Something is not working. All that money being spent and little to no progress to show for it.

So what could be the problem? Why isn’t it working?

Media?

Yes. They are one problem.

I did a little searching and I came across Canons of Journalism. It appears to be a code of ethics of sorts for Journalists. It discusses things like responsibility, truthfulness and accuracy.

It’s a code but not law. There is no requirement to follow it. The way they perpetuating the stigma in their incomplete or sensationalized reporting doesn’t seem very ethical to me.

They need to be held accountable, but how?

Society is Ignorant?

I’ve actually seen an argument that we can’t change the ignorance in our society but in almost the same breath says focus needs to be on education.

That argument genuinely confuses me, perhaps it is a “Why Bother” argument.

But.

Again, look at the money, the MILLIONS of dollars spent in just ONE year on education.

Why is society so ignorant?

Does it circle back to the media? To lack of awareness because they are not directly affected by it? Does society just not care?

Or could there be another reason that education isn’t working.

Regardless, the current battle plan in our war is not working.

It doesn’t seem to me that any of the the current methods are working.

Why?

Maybe, just maybe it loops back to the Expert Committee and the ambiguous labels given to the different forms of diabetes.

“Never doubt that a small group of thoughtful committed citizen can change the world: Indeed it’s the only thing that ever has”

Margaret Mead.

August 2017
M T W T F S S
« Nov    
 123456
78910111213
14151617181920
21222324252627
28293031  
%d bloggers like this: