Vacation and the TSA

If you read my blog because we belong to some of the same T1 groups then you have probably seen me posting about flying for the first time since Ang’s T1 diagnosis last year.  Or, my paranoia about being strip searched by the TSA for putting juice boxes in our carry on bags.  I am here to tell you that it was all for naught!

I have been so stressed out about what to pack for our trip as far as diabetes supplies and worried about “Is this going to get us in trouble?”  “Is this going to have to be thrown away at the security checkpoint?”  I now have the answers to those questions!  NO!  Just no!

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The insides of the medical suitcase. Lots of pokey things and liquids, gels and aerosols, OH MY!

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Elmo tried to make me lose my s**t!

We left Los Angeles Monday evening after a quick curbside good-bye as my husband dropped Angelina and I off at the airport.  I was a little disappointed because apparently the terminal we were dropped at didn’t have a skycap so I had to attempt to maneuver our giant suitcase (which I miraculously managed to get to weigh just under the 50 lb limit.  It weighed in at 48.6) while also carrying a giant purse, a giant backpack full of electronics, a carry on suitcase full of medical supplies, and corral Angelina!  We waited in line at the airline desk for what seemed like forever, but finally we were on our way to security.

I made a point to tell every TSA worker that we came in contact with that my daughter had T1D and that I was carrying medical supplies.  Of course, I didn’t need to and I kept being told “Tell them at the front”.  We finally made it through the (very narrow and anxiety inducing) line up to the conveyor belt.  Fortunately we got cleared into the TSA pre-check line which means I didn’t need to take anything out of any of our bags and we both got to keep our shoes on!  I told the gentleman that my daughter was T1 and that this suitcase was filled with medical supplies, including liquids.  He talked to the person running the scanner and let him know then directed us to the line for the metal detector.  I will stop here for a minute.

This was a big source of my anxiety.  We fly out of LAX and I sort of figured that if any airport had the AIT (imaging) machines, that it would be there.  TSA rules say that if you refuse the AIT you have to get a patdown.  You can’t choose the metal detector if you are supposed to go through the AIT unless you are physically incapable of standing with your arms above your head for the 7 seconds it takes them to scan you.  So, I had given Angelina an early heads up that she might have to get a pat down.  LAX does have the AIT machines, but apparently they only do them for some people and most people still just go through the metal detectors.  Woo! Was I happy to see that we didn’t have to go through the AIT.  However, when we got up to the metal detector Angelina was in front of me and the guy stops her and says “What’s that under your shirt?”  So she lifts up her shirt and starts explaining about how she has diabetes and it’s a machine for her insulin, yada yada yada. Angelina tends to be long-winded (wonder where she gets it from? *wink*) so I was just like, it’s an insulin pump and braced myself.  The guy says, okay, go on through and then stand right here and points to a spot to the side after the metal detector.

She walks through, no beeps.  I walk through, no beeps.  We stand to the side for a minute and a lady comes with a little piece of padded cloth, swipes it over Ang’s hand and sticks it in the machine then says we can go.  We walk over to the conveyor belt, grab our stuff and we are on our way.  No questions, no bag inspection, nothing.   All of my worrying was for nothing.  The whole experience was actually LESS stressful and intrusive than the last 3 or 4 times that we have flown since I didn’t have to separate out my bag of liquids and take off my shoes, etc.

The hardest part of the whole experience for me was waiting in the chute.  I am a big girl, and I am also prone to claustrophobia, so to be stuck in a partitioned line that is just wide enough to accommodate our rolling carryon suitcase, while wearing a big backpack, a big purse and said suitcase and trying to keep Angelina from knocking into things/people with her backpack was very uncomfortable.  But, we made it!

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Mood lighting to encourage sleep. Unless you’re traveling with a spastic 10 y/o who’s watching Disney on maximum brightness and insists on talking to you.

The flight is a different story.  Overnight flight with a very excited 10 y/o makes for a very exhausted mom who got zero sleep in over 24 hours.  Add in a 3 hour time loss and I am just very glad that I know what to expect for our return flight.  It should be easier.  David will be with us to help and it’s a daytime flight where we gain time instead of lose it.

 

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Pit stop for breakfast on the way from the airport. Nevermind it was technically 4am for us.

 

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Where Angelina was 15 minutes after arriving at our destination.

 

 

 

 

 

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The End.

The end of the school year is upon us, Angelina’s last day is June 19.  This is not only the end to a horrendous school year, but also her last days as an elementary student.  When she started fifth grade we expected her to be attending elementary for fifth and sixth, but apparently the school district decided that all of next year’s sixth grade students would now be attending middle school, or transferred to some of the K-8 schools in the area.  I have mixed feelings about this, first because I thought I had another year of my child still being a child, and something about her graduating to middle school a year earlier than expected makes me feel apprehensive about the years to come.  I know that it shouldn’t, since regardless of what school she goes to, she is already sprouting like a little flower and no longer resembles the little girl she was a year ago.

I haven’t quite decided if it was the start of her metamorphosis that triggered the start of her life with diabetes, of if perhaps it was the insulin that she was lacking before diagnosis, that she now gets externally, that kept her from sprouting sooner.  I doubt I’ll ever really know, and regardless it’s irrelevant because it won’t change the fact that it’s happening.  It doesn’t stop me from wondering though.

I digress.  The point of all this is not that I now am living with a ‘tween, but the fact that I am apprehensive about what next school year will bring.  We’ve had some less than stellar experiences with her school this past year, partly due to her diabetes, and partly due to her behavioral issues, which are often exacerbated by her diabetes.  Anyone who’s ever seen their normally sweet tempered child have a total emotional meltdown with a high or low blood sugar know what I’m talking about…  but with Angelina, those behaviors are a dime a dozen when her blood sugar is NORMAL, they are exponentially worse when blood sugar levels are not where they should be.  I’ve explained this a million times, but the teacher asked the school nurse who said “No, that’s not blood sugar related.” and now Angelina gets punished for  behaviors she hasn’t learned to identify as high or low blood sugar, and no one seems to understand that treating the blood sugar issue will help treat the behavioral issue.

So here’s where my fear comes in…  I don’t know what to expect of middle school.  I know earlier this year when I asked for more independence for Angelina in the form of testing and treating in the classroom I was told “We usually don’t do that at the elementary level.  Maybe next year when she’s in middle school.”  or “She hasn’t shown that she’s responsible to check herself unsupervised and her teacher isn’t trained.” (An aside here… I offered SEVERAL times to give her teacher even just BASIC training and she refused saying “It’s fine, she can go to the office when she needs to.”  Nevermind that when Angelina requests to go to the office and it’s not a “scheduled” time her teacher tells her no or to wait until it’s more convenient for the class.  Hello!?!?  Basic diabetes training would tell you that DIABETES DOES NOT WAIT UNTIL IT’S CONVENIENT.  If she says she needs to go to the nurse, she needs to go to the effing nurse!)  I’m worried about teachers next year who will only have her part of the day and probably not communicating about what’s going on with her… and her being her getting upset and again being seen as a behavioral problem student.  I want her to be more independent, I want her to be able to text/call ME for advice and to relay what is going on during the day, but her current school said she’s not allowed to do that.  Will middle school be different? Or will they see a cell phone as a cell phone and again screw things up because they can’t separate Angelina from her diabetes from her ADHD/ODD and resultant behavioral issues?

I’m hoping that new school=clean slate, but at the same time that means that all the staff, teachers, administrators are new to her and don’t know how she works.  I wanted to home school her next year, but that has been put on hold.  And, if I’m being honest, I don’t really want to home school her, I just don’t want her to be in regular school anymore.  I don’t have the patience and the tenacity to be home with her 24/7, let alone spending several hours of each of those days trying to “do school”.  I have this illusion that we could make it work, but I think it may be just that- an illusion.  So, instead I am stuck in a less than favorable position of watching someone else be frustrated and impatient with her, potentially putting her in danger because they don’t understand her medical conditions, doing emotional harm to her because they don’t understand that she’s not a “bad kid” she just has “problem behaviors”.

She’s such a beautiful person and I don’t know what the right answer is to get her to adulthood and for her to be educated without losing the good person that she really is.  I feel like public school is crushing both of our souls.  I feel like her staying home with me wouldn’t necessarily be a better option.

All of this pondering on screen is a poor attempt to review her 504 plan and ready any changes that I think she will need for next year.  And it crushes me to know that the school will likely agree to the accommodations, and it scares me that we will have a repeat of this year, where everything is agreed to, but the teacher(s) don’t seem to read or follow it without many reminders… often that come AFTER some vital accommodation was previously not followed.  I feel like throwing in the towel. but in this fight, I am her voice.  I am her advocate.  I am the one who knows her and her needs more than anyone else, and I am the one who has to make sure those needs are being met.

I am a d-mom, hear me roar!

#DBW 1 – Change the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)    From: http://www.bittersweetdiabetes.com/p/2014-diabetes-blog-week-topics-posts.html

 

While I’m not out to change the entire world, I do try to change at least our small part of it.  So, what am I passionate about when it comes to diabetes?  Can you guess?  I can’t pick just one topic.  Support.  Education. School issues.  Those are probably the ones that I participate or talk about the most.  The ones I am most passionate about.

I don’t see “support” and automatically think about it being advocacy though.  I think of it as a lifeline for anyone who is dealing with diabetes in any way – whether it is a person with diabetes, parent of someone with diabetes, friends, family, co-workers.  There is no limit to who can benefit from support when it comes to having diabetes touch your life.  I honestly wouldn’t be where I am right now in Angelina’s journey if it weren’t for the DOC and the 24/7 support and connection with so many other people who are walking a parallel road.  Which brings me to the next cause:

EDUCATION.  Diabetes education is probably the thing I am most vocal about, simply because I feel like there’s not enough awareness out there about Type 1.  And it seems that even the people who try to raise awareness for Type 1 do it at the expense of Type 2.  By saying “well, that statement that you made about food doesn’t apply to T1.  My T1 child didn’t do this to themselves.”  While the statement is true, it implies that people with T2 “did it to themselves”, which is not always the case.  I don’t agree with raising awareness and education for one condition while making ignorant statements or putting down people with another, similar condition.  Yes, Type 1 and Type 2 are different.  Yes, Type 2 does have risk factors that include lifestyle choices… but, it also has a strongly genetic component.  And regardless of any of that, diabetes, in any form, SUCKS!  No one asks to have diabetes.  So placing blame doesn’t benefit either cause. If I am going to teach someone about something and part of that education is differentiation from a misconception they have based on something else then I am also going to educate myself on the other topic (in this case, Type 2) so that I don’t come up looking like the ignorant and mistaken one.

Lastly, school issues.  This is a tough one for me.  I have a loud mouth, and a blog that I can share a lot of information on.  Feelings, frustrations, triumphs, thoughts, information…  But when it comes down to it, advocating for your child at their school is HARD.  Because it’s not about just shooting your mouth off.  If you want things done your way at your child’s school then you have to find a balance between being pushy, and being a push-over.  If you go in guns blazing, chances are the school personnel are going to push back against everything you demand.  But sometimes, if you go in nice and easy they just steam roll right over you and you leave feeling like you weren’t heard and didn’t get the things that you want and need for your child’s safety and well-being at school.  Finding the balance is difficult.  Forget difficult, it’s damn near impossible.  Sometimes you can’t do it on your own.  Both the American Diabetes Association and JDRF will provide information for working with the school on your own to come to an agreement about how your child’s diabetes will be managed at school.  Sometimes, doing it alone isn’t enough.  Both the ADA and JDRF have legal advocates that can help guide you and will also attend meetings with you to make sure that the laws and regulations regarding students with diabetes are being followed.  And sometimes, the school seems to go along with all your requests during 504 meetings and then doesn’t follow the accommodations that were agreed to.  Taking the steps to make sure that not only are the accommodations being agreed to, but also followed, can be a tenuous process.  But, in the end, our children are the priority and as a parent we must do whatever it takes to ensure that they are having their needs met.

Insulin isn’t a cure… it’s also not a cause.

This was shared in Type 1 Group that I participate in. This plaque/exhibit is located at the National Museum of American History, which is part of the Smithsonian Institute in Washington, D.C. It just goes to show that even in the scholarly community there is a lot of ignorance and misinformation about type 1 diabetes. For those of you reading this who have T1 or are raising/have raised a child with T1 you can understand why this is upsetting.
1962719_10152769915681777_186074962_nThe plaque reads:

GROWING DEMAND…

Before the discovery of insulin in the early 1920’s, people who developed diabetes usually died within a few years. Although insulin therapy was not a cure, its use, along with dietary control and constant monitoring, enabled diabetics to live long and active lives.

The success of insulin therapy created a growing population dependent on the drug. Over the past 20 years, unhealthy changes in lifestyle and eating habits have contributed to a dramatic increase in the number of Americans with diabetes. Together, these factors have generated an ever-expanding demand for insulin.

For those of you who don’t see a problem with what is written: That is the problem.  There are many awareness campaigns out there about Type 2 diabetes and how getting active and eating a healthy diet can help prevent developing type 2, but there is little differentiation, even in the medical community about the Type 1 and how it differs from Type 2.  Those who are uneducated on the subject (and even some of those who should be educated, but aren’t) seem to lump the two together not realizing that they are in effect blaming children (or parents) for their child getting Type 1, when in fact there are no prescribed risk factors, no prevention techniques, and often no real indication of there even being a risk.  Only about 10% of people who are diagnosed with Type 1 have any family history, which means that for 90% of those diagnosed, they often have no idea they were even at risk until they were diagnosed.

Type 1 and Type 2 are vastly different conditions, caused by different things, and the treatment is also managed very differently. The similarity is that without treatment they both cause high blood sugar, which causes excessive thirst and frequent urination, among other symptoms. The name diabetes mellitus comes from Greek and Latin origins with the “Diabetes” meaning “pass through” or “siphon” while “Mellitus” means “honey” or “sugar” and refers to the urine passing through and being sweet. In ancient cultures “sweet urine” was first discovered by the fact that people with this condition had urine that attracted ants and had sweet odor and taste.
Anyway, Type 1 diabetes, which is an autoimmune condition, is when the insulin producing cells in the pancreas are attacked and killed by the immune system causing the person to no longer produce insulin, requiring the use of insulin from an external source, today that is primarily synthetic human insulin. The exact cause of the autoimmune reaction that triggers the cells in the pancreas is still a bit of a mystery in the medical community. But, the fact of the matter is that without supplemental insulin people with type 1 diabetes will die. No amount of exercise and healthy eating will cure them, or even treat them, without also having injected insulin. There currently is no prevention or cure for type 1 diabetes and the most effective treatment is injection insulin.

Type 2 diabetes, on the other hand, is when insulin is still produced by the pancreas but the body does not use it efficiently because their cells are insulin resistant. A low carb diet and exercise both help to increase insulin sensitivity, as well as certain oral medications. Diet and exercise can be used to maintain relatively “normal” blood sugar levels in someone with type 2. In some cases, people with type 2 may progress to a point that their pancreas is working extra hard to provide enough insulin to meet their increased needs due to insulin resistance and some of their insulin producing cells may be overworked and stop producing, requiring the person to also use supplemental insulin, but again this is in conjunction with lifestyle changes and oral medications to increase their response to the insulin they make as well as insulin they may receive from an outside source. The cause of Type 2 diabetes often has to do with a genetic pre-disposition and can also be further contributed to by poor nutritional choices and little exercise. In a lot of cases type 2 can be prevented, or managed with a proper diet and moderate exercise and insulin is rarely, if ever, a first line treatment for Type 2 diabetes.

Welcome to National Diabetes Awareness Month!

As a nice kickoff for #NDAM (National Diabetes Awareness Month) I decided to share our day with the Twitterverse and Facebook through my twitter account: @ChasingLows and facebook page: Chasing Lows.  This was a total rip off of the T1D4ADay awareness campaign that I blogged about in an earlier post that is being sponsored by JDRF and Lilly Diabetes.  I just thought it would be cool to add our voice and experience to the cause to bring awareness to how Type 1 Diabetes effects us on a personal level on a daily basis.

In addition to my own T1DPARENT4ADay campaign (haha) I am also planning on participating in the Diabetes Awareness Month Photo A Day challenge and will be attempting to throw up a photo each day.  This will be more likely to happen through Twitter or my facebook page, so be sure to check in at the links I added above!

Since I am here though, right now, here is the challenge: I think this particular list was “borrowed” from Kerri over at Six Until Me, but I got it from Katy at Bigfoot Child Have Diabetes.

Diabetes Month Photo A Day

 

 

 

 

 

 

 

 

 

 

 

For Day 1 here is a “Past” picture:  This was Angelina practicing her “scary” persona in preparation for being a vampire princess for Halloween.  This was from Halloween 2009, so she was 6 years old.ang vampire

Only the Flu?

Logo for the World Diabetes Day

Logo for the World Diabetes Day (Photo credit: Wikipedia)

I am going to post the following information, not to scare anyone, but to share how important the following is and how a simple test can make a huge difference.

In the past 2 weeks I have heard of THREE different children dying because of a missed Type 1 Diabetes diagnosis. Two of those children were infants, one 8 month old and one 10 month old. These children’s parents were told that their child’s symptoms were “the flu” or some other similar malady. There is so much awareness and training for Type 2 diabetes, which is by far more common than Type 1 and comprises about 85-90% of people with diabetes. But type 1 has far more serious consequences if not taken care of immediately when symptoms present. With cold and flu season soon upon us I would like to share with you the common symptoms of type 1 diabetes that often get written off as something non-serious.

1. Frequent urination
2. Excessive thirst
3. Fruity or winelike smelling breath (can also sometimes smell like acetone)
4. Excessive hunger
5. Blurred vision
6. Fatigue/lethargy
7. Vomiting
8. Labored breathing or wheezing
9. Sudden unexplained weight loss

Most of these symptoms are not too worrisome on their own, and most general practitioners are not trained in identifying and treating type 1 diabetes. If your child is experiencing these symptoms and you take them to the dr, ask for them to do a fingerstick to check blood sugar and/or a urine dipstick test to check for sugar or ketones in the urine.

IF these tests are done and the dr thinks it might be diabetes, go to the ER or hospital. As I previously stated, most dr’s are trained in Type 2 Diabetes which doesn’t usually require emergency care at onset because the pancreas is still producing insulin, it just doesn’t use it efficiently. With type 1 diabetes the pancreas does not produce insulin (or not enough) and the body will essentially starve to death because it cannot use the food for fuel and will start breaking down fat stores to function. The byproduct of the body burning fat for fuel are called ketones and they can cause the blood to become acidic (ketoacidosis) Organ damage or failure can result if diabetes is left untreated, especially the kidneys.

Again, I am not sharing any of this to scare anyone, but to encourage parents to ask for a simple test if the dr is not sure if your child’s symptoms are the flu.

Angelina had a cold the week of her diagnosis, she started using the restroom a lot, drinking a lot and complaining of her eyes being blurry. I thought she was dehydrated from being sick. It was 3 days from when that first symptom occurred until I took her to the dr, and I took her because the cold was getting worse instead of better (it ended up being pneumonia), not because of the other symptoms. She spent 4 days in the hospital getting her blood sugar down to normal levels and was in mild diabetic ketoacidosis. She had lost about 5-7 lbs in 2 weeks, and I wrote it off as a growth spurt because she always gets taller before she gains weight.

I have talked to numerous other parent’s in the Type 1 Diabetes community and most of their stories are similar to ours – they thought their child had a UTI, or was dehydrated, or had the flu. They didn’t have diabetes in their family so they never even considered that it could be that. Diabetes isn’t only a familial disease. Only 10-15% of people with type 1 diabetes have a relative with diabetes.

If you would like more information about Type 1 Diabetes you can go the American Diabetes Association (ADA) webpage.  The Juvenile Diabetes Research Foundation (JDRF) also has some good information.  Or, feel free to email me at:  Type1DMom@outlook.com  and I will try to help point you in the right direction.

We need to get the word out so kids can stop dying because of a lack of education and awareness.  Type 1 diabetes is a very treatable disease.  It’s not easy, by any means.  But it is treatable, and people with diabetes can and will go on to lead long and fulfilling lives with proper education and treatment.