Oh – He Had It Bad

Contrary to what John Q. Public believes there are no levels of severity with Diabetes.

Wearing an insulin pump does not mean the pwd has it worse than another pwd.

Last night was Back To School night at my sons middle school. It isn’t really a time to meet the teachers and have a conference. Parents walk their child’s schedule and sit for 10 minutes in each class learning about what their child will do in class, class rules, and a bit about the teacher in the class. Then the bell rings and we have 4 minutes to get to the next class on our child’s schedule. The evening does not allow for chit chat between parents and teachers. Still…

My Middles is new to middle school and new to HAVING diabetes. Not so much new to diabetes as it has been living with us for over 7 years. Living around diabetes and living with diabetes are two totally different experiences. Sure Middles understands what diabetes is and mostly how to care for himself but he is still a bit green when it comes to understanding what all his numbers mean and what course of action to take depending on his schedule and what his numbers are.

For example, heading into PE with a 73 is not necessarily ok without eating a small snack first. Or finding a 49 on the meter, eating a fruit roll-up but not telling anyone that his blood sugar is low is not ideal.

Middles is not taking fast acting insulin yet. He is taking long acting in the morning which has helped his post meal sugars and fasting sugars stay within range but it has also dropped him below 70 more than a few times.

He and I are working together to help him understand the importance of checking often and recognizing what his body is telling him as well as who to tell if his sugars dip below 70.

Going back to Back To School Night – I didn’t introduce myself or chat with all his teachers. Just one. An important one.

It’s only the end of the 3rd week of school. Each teacher has over 200 students a day so it isn’t likely that they know all their students. Yet I was surprised when this teacher didn’t know who my son was or that he had diabetes. I was assured by the counselor that they all received medical information about my son. We haven’t written an official 504 yet but I have shared information with each of his teachers via email. Still this teacher had no idea who my son was. I explained he had diabetes and the activities in the class could cause him to experience a low blood sugar. The teacher assured me that he keeps glucose tabs for all his students with diabetes. Then he said this…

“I had this one student that had it really bad. Had to wear an insulin pump and everything.”

Heart sank. Blood boiled. Tried not to make eye contact. Tried not to grab the very large man by the shirt and shake the crap outta him while screaming – “Insulin doesn’t mean BAD”

The bell rang and I was going to be late getting to the next class so I simply invited him to the 504 meeting on the 24th. He said he was required to be at the meeting (he did this with a grimace).

I get that the general public doesn’t understand diabetes. I didn’t understand it before Sugarboy was diagnosed. I get that main stream media doesn’t do a great job of helping others understand diabetes. I see magazines at the check out that say “Reverse your diabetes now”, “Avoid insulin if you’re diabetic”, “Diabetic friendly recipes”, etc. – it saddens me that there is so much misinformation shared in commercials, news stories, sitcoms, and on the internet.

It is why I write on this blog, why I share other blogs, why I normally would stop and school people who have been mislead. It’s why I carry a touch to enlighten people or beat them with it.

If you have a child with diabetes and are unsure if your child’s teacher understands diabetes consider copying the following and sharing it with your child’s teachers. The notes I sent obviously included my children’s names. Changed here for safety and put in Bold to help identify where you would insert your child’s name.

I sent this to all of my kids teachers the first day of school. For Sweetstuff and Sugarboy I said that their current 504 plans are in effect until a new plan is written. For Middles I explained that a 504 meeting would be held soon.

What is (or will be) in the 504.

  • Unrestricted access to restrooms without penalty or undue attention
  • Unrestricted access to water (she will have a water bottle with her at all times)
  • Unrestricted access to fast acting carbohydrates to treat low blood sugars (she will carry fast carbs with her)
  • Unrestricted access to her glucometer and diabetes supplies (she will have these on her at all times)
  • The authority to check her blood sugar in class at regular scheduled times and as necessary if she feels high/low.
  • Authority to use her cell phone to text me her blood sugar numbers and ask for advice as to how to treat a low or high blood sugar. She has been instructed to keep her phone on silent at all times and not to use her phone for any purpose other than to text me.
  • Guidelines related to when Sweetstuff can participate in an exam. Meaning if her blood sugars are too high/low prior to the start of an exam she will have to wait to take the exam without penalty. We make every effort to ensure Sweetstuff is within range at all times but diabetes doesn’t always play fair. High and Low blood sugars cause her brain to be less efficient. Highs can make her thought process cloudy and cause severe headaches; low blood sugars would be similar to being intoxicated.
  • Sweetstuff will not be allowed to participate in PE if her blood sugars are in an unsafe range – extreme physical activity can lower blood sugars rapidly so his blood sugar needs to be at a safe level prior to PE to avoid severe lows which can result in seizures and unconsciousness. Extreme high blood sugars often cause the body to produce ketones. Ketones combined with extreme physical activity can result in swelling in the brain. I am sharing this with all teachers because occasionally teachers of all subjects are very creative and could include physical activities to teach a lesson so it is important to be aware of Sweetstuff’s need to check blood sugars prior to participating.
  • If Sweetstuff is experiencing a severe low blood sugar (<70) she should not be left alone. If her blood sugar is above 60 but below 70 she can be escorted to the health office to treat the low blood sugar. If below 60 she will need to treat the low blood sugar with fast carbs before leaving the classroom and being escorted to the health office.
  • I will attend field trips or if I am unavailable the school will send the district nurse or other qualified staff to assist with insulin dosage. I am happy to act as a chaperone during the field trips if needed. It would be very helpful to know the possible dates of field trips so I can plan to be available.
  • There will be (likely are already due to other diabetics in the school) staff trained on emergency glucagon. It is similar to an epi-pen but for diabetics experiencing a severe low blood sugar who have already begun to have seizures or have fallen unconscious.

 Forgive me if you are familiar with Type 1 diabetes but I am sharing a few basic facts in case you would like to understand more about Type 1 Diabetes. (Included this note as an FYI for all teachers)

  • Type 1 diabetes is an autoimmune disease. The body’s own immune system decides to attack the insulin producing cells in the pancreas leaving people with Type 1 diabetes insulin dependent for life.
  • People with Type 1 diabetes did not cause it to happen by eating poorly or failing to exercise. (I am not suggesting that other types of diabetes are caused by poor diet or inactivity) 
  • There is no cure for diabetes. Artificial insulin allows people with Type 1 diabetes to stay alive but it is not a cure.
  • People with Type 1 diabetes check their blood sugar by poking their finger to obtain a drop of blood up to 14 times a day.
  • People with Type 1 diabetes must take insulin via syringes or an insulin pump. Those wearing an insulin pump must wear it 24/7.
  • A person with Type 1 diabetes can eat everything everyone else eats – although it doesn’t mean they should any more than it means those without diabetes should be eating unhealthy foods.
  • There are only two things a person with Type 1 diabetes cannot do (at least in the US) – fly a commercial jet and join the US military. Currently there are celebrities, professional athletes, Olympians, Elected Officials, Fire fighters, police officers, and other professionals in all careers fields that live well and find great success despite having Type 1 diabetes.
  • Diabetes is a life threatening disease every day. People with diabetes make dozens of decisions each day regarding food, exercise, and daily chores to effectively manage diabetes.
  • Kids with diabetes, especially in the middle school and high school years can be ashamed or embarrassed by their diabetes. Few kids like to be viewed as ‘different’ and poking oneself multiple times a day, wearing an insulin pump, or injecting insulin via a syringe shines a bright light on kids with diabetes. Developing a management plan that the student is comfortable with is a key component to allowing the student to effectively manage his/her diabetes.

 Symptoms of Low blood sugars

  • Pale skin
  • Sunken eyes
  • Dizzy
  • Shaking
  • Disoriented
  • Extreme hunger
  • Sweating outside of a extreme activity

 Symptoms of High Blood Sugars

  • Extreme thirst
  • Frequent Urination
  • Hunger
  • Headache
  • Body aches
  • Poor/blurred vision
  • Increased frustration in daily tasks

8 thoughts on “Oh – He Had It Bad

  1. If someone said that about me, I’d probably tell them that I don’t HAVE to wear an insulin pump; rather I CHOOSE to wear it. Putting a face with the rebuttal makes it harder for the person to argue back. It might also make them think a little.

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    1. Thanks a great answer Scott. although I think some people think insulin in general means the bad kind of diabetes or that a person has it worse than others that don’t need insulin. Education is the only way to really fight back and if given with a smile it will likely sink in. Still I do picture myself stabbing some folks that say stupid stuff.

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  2. I just can’t even imagine! Well… actually it isn’t really that hard to see that conversation happening, but it doesn’t make it any less frustrating! Good luck with the 504 meeting.

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    1. Thanks Sara. It isn’t the first time and wont be the last time I hear people suggest that there are better and worse levels of T1D or that insulin pumps mean the ‘bad’ kind. I don’t blame the public – there just isn’t enough info out there – I was one of them before Sugarboy was diagnosed.
      Im sure the 504 meeting will go well. Middles isn’t the first T1D at his school and a friend who has an 8th grade T1D daughter at the school has assured me that the school is really great about everything.

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  3. I remember you voicing this frustration in another post about a cashier who had diabetes since he was a baby. He didn’t use a pump because he didn’t think his diabetes was “bad” enough.

    I was discussing with Kerri about how maybe the diabetes community is stronger than the asthma one is that all T1Ds are essentially in the same boat. There are no levels of severity, so either you have everything or you don’t. (Am I right? Please correct me if I’m wrong.)

    Unlike diabetes, asthma has a whole spectrum, but I do empathize with you. There are people who think my asthma is “severe” or “really bad” because I’m on long term inhaled steroids (and also bronchodilators which are actually more dangerous than steroids, but people don’t realize that because they’ve never heard of that word). Big whoop. No big deal. Been using this stuff for most of my life. And thanks to it, I function completely normally on the whole. I’m incredibly lucky. I doubt the people who give me these comments have ever seen a “severe” asthmatic. Now that is scary. But according to these people, the need to take daily medication (which I’m pretty sure is now recommended for any asthmatic who has symptoms more often than a few times a year) makes me at death’s door or something.

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    1. Hi friend. Correct – all people with T1D need to basically do the same things to stay healthy and alive. I think the only difference between ‘severity’ is that some folks seem to be more susceptible to complications than others. There are pwd that have had it for decades with no complications and then there are those that have it for less than half a decade and develop complications – yet have done everything they should to take care of themselves. Thus – I guess in a round about way some have it ‘worse’ than others but not in the way strangers are suggesting. Strangers and yes even some pwd view using an insulin pump means ‘worse’.

      I can see how there are many different levels of severity with asthma. Im just thankful there are medications and treatments that allow those with asthma to live the active full lives they are meant to.

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