Across my news feeds I saw a blurb the President Obama had signed into law the School Access to Emergency Epinephrine Act

Doing a little digging within the law it:

Requires elementary and secondary schools in such a state to: (1) permit trained personnel to administer epinephrine to a student reasonably believed to be having such a reaction, (2) maintain a supply of epinephrine in a secure location that is easily accessible to trained personnel for such treatment, and (3) have in place a plan for having on the school premises during operating hours one or more designated personnel trained in administration of epinephrine.

This is the way it should be… it should not be left up to the individual states to determine whether or not a child has access to lifesaving emergency intervention.

And as wonderful as I think this is and I as happy I am for the families who have this worry for their children… why only the Epipen?

Why not include other lifesaving emergency intervention for all students?

I do understand it was not their battle, but…

Why is this not also being done for Glucagon?

Well done to FARE and their advocates for their tireless work to make this a reality.

I hope the American Diabetes Association and JDRF will follow suit of your great example.

I had intended to let the day pass by…the month for that matter

Years ago, I took a step back from everything and just concentrated on our day to day in the diabetes life. I was afraid that my actions might lead to her only being identified by diabetes. So I made the conscious choice to concentrate on her as a whole and not her disease.

Because she is so much more than her non-functioning pancreas.

And she is amazing.

In all honesty, I sometimes feel guilty that I’m not doing my part by choosing to participate in Diabetes Awareness Month or World Diabetes Day or fundraising for a cure. But then I remind myself of the reasons I did step back and I see my happy child continuing on with life as if it is hers to conquer. And once again, I’m ok with my decision.

But this year, she decided she wanted to mark the day. She took the initiative to coordinate and, with the support of her school staff, encourage her school mates to also wear blue. Because it’s about more than her and she told that in her commercial… many know someone with diabetes…many love someone with diabetes. Type doesn’t matter, it’s all hard work and support can be shown in even by the simple act of wearing blue today.

But if you choose not to mark the day or month, that’s ok too. It doesn’t make you any less an advocate and it doesn’t mean you don’t care. Diabetes is 24 hours a day, 7 days a week, year after year after year. Occasions to make a difference come up often in our lives. Educating and/or fighting the schools pave the way for future children who will enter that building or reaching out to a family who has just received a new dx and helping them not feel as alone as they enter this life. Even doing nothing and continuing on with your life and not making diabetes the focus makes a difference.

No matter if you choose to participate or not, do what is best for you and yours.

Today we decorate their hands and we will wear blue. Because it’s what she wants. I have no idea what we’ll do next November. I do know whatever will happen will be a result of taking her lead and letting her pave the way.

“It could be worse” is a phrase that is often said to families when hearing of a diabetes diagnosis.

Sometimes it is used because the speaker is unsure of what to say.

Sometimes it is the result of media only education.

Perhaps because even if the intent is not there, it comes across as diminishing the battle you’ve just been handed.

Normally, this phrase makes me cringe.

But not today.

Today I nod in agreement that it most certainly ‘could be worse.’

Today a friend lost her husband after a long courageous battle of kidney cancer.

And my heart is broken today for her and her young daughters.

The diabetes community excels at its online social network.

My friend and her husband were instrumental in doing the same for Kidney Cancer.

They courageously shared their journey on their blog and shared themselves with the world.

They did so with a written talent that I wish I could replicate.

Humor is interlaced throughout it all, even surrounding the (dry) medical explanations.

But even more important, for me at least, is the demonstration of obvious love and dedication to each other.

In sickness and in health, they defined that promise to me.

Even today they are thinking of others. Instead of flowers, they are asking for donations to be made to benefit Kidney Cancer Research.

If you are so inclined, you can designate Dr. Hans Hammer in Memory of Chris Battle.

In hopes that no other family will be mourning the loss of their spouse, parent, sibling to the ravage evil beast that is cancer.

I am so thankful they shared their journey with me. I wished and hoped the story would turn out any other way. And I hope that the Johns Hopkins Kimmel Cancer Center is flooded with donations beyond their wildest dreams. And I hope so much that it leads to a cure. I just wish it could have come sooner.

Yes, it most definitely could be worse.

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.

 

“Happy Memorial Day”

There is nothing happy about the holiday.

It is about honoring our military who were unable to hug their family when they returned from war.

Who gave the ultimate sacrifice in duty to their country.

Who have spouses, children, family, and friends left with an irreparable hole in their hearts.

I ask for one favor if you are BBQing and celebrating the start of warmer weather with family and friends this weekend.

Take a moment to look around you and be thankful.

Hug your loved ones close and think of those who cannot longer do so.

Make memories. Every moment counts.

You never know when that is all you will have left of someone.

…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.


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