Vocabulary Lesson

Awhile back I would post "word of the day" on Trey's Facebook page.  The diabetes lingo can get confusing.  I was trying to make a file where it would be saved, but no luck.  So I thought I would make a post here ... you can come here and look up words whenever. 

504 - A plan developed to meet the requirements of the Rehabilitation Act of 1973 that prohibits discrimination against people with disabilities. Section 504, applicable to all public and private schools that receive federal funds, allows for different accommodations to be agreed upon to meet the special needs of a student with diabetes.

HEMOGLOBIN A1C - Glycated hemoglobin (red blood cells with glucose attached). Normal levels of glucose produce a normal amount of glycated hemoglobin. As the average amount of plasma (blood) glucose increases, the glycated hemoglobin increases in a predictable way. This serves as a marker for average blood glucose levels over the previous three months before the measurement as this is the lifespan of red blood cells.

A1C TEST - A test that shows the average amount of sugar in the blood for the past 2 to 3 months. This test helps your doctor to see if your average blood sugar is where it needs to be. A1C tests may also be used to assess the effectiveness of treatment(s) recommended and make adjustment(s) to treatment(s).

ALPHA CELL - A type of cell in the pancreas. Alpha cells make and release a hormone called glucagon. The body sends a signal to the alpha cells to make glucagon when blood glucose falls too low. Then glucagon reaches the liver where it tells the liver to release glucose into the blood for energy.

AMYLIN - A hormone produced by pancreatic beta cells that is co‐created with insulin and works synergistically with insulin to lower blood sugar level. Amylin plays a role in glycemic regulation by slowing gastric emptying and promoting satiety, thereby preventing post‐prandial spikes in blood glucose level.

ANTIBODIES - Proteins made by the body to protect itself from foreign substances such as bacteria or viruses. People get type 1 diabetes when their bodies make antibodies that destroy the body’s own insulin-making beta cells.

AUTOIMMUNE DISEASE - An autoimmune disease is a condition arising from an abnormal internal response to a normal body part.

BAD SITE - The most common problem that occurs with pump use is a bad infusion site. The infusion site is where the very thin Teflon, stainless steel, or plastic cannula, that delivers the insulin to the tissue just under the skin, is inserted.

BASAL INSULIN - The amount of insulin that is needed to maintain stable blood glucose levels in between meals and overnight. Also referred to as Background Insulin.

BASAL RATE/DELIVERY - The rate at which a continuous, low level of insulin is delivered.

BETA CELL - A cell that makes insulin. Beta cells are located in the Islets of Langerhans which are irregularly shaped patches of endocrine tissue located within the pancreas

BLEEDER - A finger that continues bleeding after a blood glucose test. Also used when an insulin needle or pump infusion site is pulled out and causes excessive bleeding. Also applicable to a CGM sensor site that shows blood under the sensor.

BLOOD GLUCOSE METER (glucometer) - A medical device for determining the approximate concentration of glucose in the blood.

BOLUS - A bolus dose is insulin that is specifically taken at meal times to keep blood glucose levels under control following a meal. Bolus insulin needs to act quickly therefore short acting insulin or rapid acting insulin will be used.

CANNULA - Part of an infusion set. A tube inserted into the body with the purpose to either deliver or remove fluid.

CDE - Certified Diabetes Educator. 

CGM - Continuous Glucose Monitor

COMPRESSION LOW - A low reading on the continuous glucose monitor receiver due to pressure applied to the sensor/transmitter site, this typically occurs during sleep and is not an indicator of a true low blood sugar.

CORRECTION - An additional amount of insulin delivered to counteract a high blood glucose reading. Can be done in conjunction with meal bolus or independently.

CORRECTION FACTOR/RATIO - A Correction Factor (sometimes called insulin sensitivity ratio), is how much 1 unit of rapid acting insulin will generally lower your blood glucose over 2 to 4 hours when you are in a fasting or pre-meal state.

C-PEPTIDE - A substance the pancreas releases into the bloodstream in equal amounts to insulin.

C-PEPTIDE TEST -  test that shows how much insulin the body is making by measuring C-peptide levels.

DAWN PHENOMENON - The dawn phenomenon, also called the dawn effect, is the term used to describe an abnormal early-morning increase in blood sugar (glucose) — usually between 2 and 8 a.m. Dawn Phenomenon occurs when hormones (including cortisol, glucagon, epinephrine) are released by the body, causing the liver to release glucose.

D-BAG - Diabetes supply bag that goes with you everywhere.

DEX - Short for Dexcom continuous glucose monitoring system.

DIAVERSARY - Anniversary of the day a person was diagnosed with diabetes, celebrating living a full and wonderful life despite the diagnosis. A celebration of life.

DKA (Diabetic Ketoacidosis) - An emergency condition in which extremely high blood glucose levels, along with a lack of insulin, result in the breakdown of body fat for energy and an accumulation of ketones in the blood and urine. Signs of DKA are nausea and vomiting, stomach pain, fruity breath odor and rapid breathing. 

DOSING - Incremental increase in insulin dosage to a level that provides the optima effect.

DUAL WAVE BOLUS - Insulin delivery option on some insulin pumps. A Dual Wave bolus delivers a combination of an immediate normal bolus followed by a Square Wave bolus. The Dual Wave bolus should be used for high fat, high carbohydrate meals.Whenever we eat foods higher in fat, it takes our bodies longer to digest those foods. Therefore, we do not need to take the bolus all at once, but to spread the bolus out over time to mimic normal pancreatic function and match the time that it is taking our bodies to digest the food. 

DX / DXD - Diagnosis / Diagnosed.

ENDO - A pediatric endocrinologist is a doctor who specializes in the diagnosis and treatment of children with diseases of the endocrine system, such as Type 1 Diabetes and growth disorders.

EXTENDED BOLUS - Insulin Delivery option on some insulin pumps. The bolus is delivered in small quantities over an extended, chosen period of time. Depending on the insulin pump, this type is called delayed or extended bolus or sometimes also referred to as the "pizza" bolus

FAST ACTING GLUCOSE - A form of carbohydrate that will raise blood glucose levels quickly. The term “fast-acting carbohydrate” is generally used in discussions of treating hypoglycemia, or low blood sugar. (juice, smarties, skittles)

GENTEEL - The Genteel® Lancet Device uses it’s Butterfly Touch Technology® to get the perfect drop of test blood with reduced pain and discomfort.

GRIF GRIP - Adhesive patches that will help secure your devices from impacts that would normally disengage the device.

GLUCAGON - A hormone formed in the pancreas that promotes the breakdown of glycogen to glucose in the liver which stimulates an increase in blood sugar levels, thus opposing the action of insulin; a polypeptide hormone, produced in the pancreas by the islets of Langerhans, that stimulates the release of glucose into the blood. 

GLUCAGON EMERGENCY KIT - Glucagon rescue is the emergency injection of glucagon in case of severe diabetic hypoglycemia. It is needed during seizures and/or unconsciousness by an insulin user who is unable. at that point, to help themselves. Glucagon will facilitate the release of stored glucose back into the bloodstream, raising the blood glucose level.

GLYCEMIC INDEX - A system that ranks foods on a scale from 1 to 100 based on their effect on blood-sugar levels.

GLYCOGEN STORES - Glycogen, the major reservoir of carbohydrate in the body, is comprised of long chain polymers of glucose molecules. The body stores approximately 450-550 grams of glycogen within the muscle and liver for energy during exercise.

HONEYMOON (HONEYMOON PERIOD) - The honeymoon period usually occurs after the child/young adult/adult is diagnosed with type 1 diabetes and has begun insulin treatment. After several weeks to several months (the time is variable), the person with diabetes starts to produce his/her own insulin (endogenous insulin) secondary to some recovery of pancreatic islet cells. Honeymoon periods can last from two weeks up to 2 to 3 years. It is different for each individual. Sometimes, if the diabetes diagnosis is determined extremely early (with less destruction of beta cells), the honeymoon period can last even longer. NOTE: Some people may never experience a Honeymoon Period. 

HYPERGLYCEMIA - A condition in which the blood contains an abnormally high level of glucose.

HYPOGLYCEMIA - Too low a level of glucose n the blood. This can when there is too much insulin ingested or injected with too little food.

I:C - Insulin to Carbohydrate ratio. The insulin to carbohydrate ratio indicates how many carbohydrates one unit of insulin will provide coverage for.

INFUSION SET - The combination of thin plastic tubing and a stainless steel needle, Teflon, or plastic cannula used with an insulin pump.

INSULIN PUMP - An insulin pump is a medical device used for the administration of insulin in the treatment of Type 1 Diabetes, also known as continuous subcutaneous insulin infusion therapy. The device configuration may vary depending on design.

(ISF) INSULIN SENSITIVITY FACTOR - The amount of blood sugar measured in mg/dL that is lowered by one-unit of rapid-acting or regular insulin. This is used to calculate the amount of insulin a person with diabetes needs to return blood sugar to within the targeted blood sugar range.

IOB - Insulin on Board, also referred to as Bolus on Board or Active Insulin, tells how many units of rapid insulin are still working in the body. This helps in deciding whether more insulin or more carbohydrate is needed.

ISLET CELL AUTOANTIBODIES - Proteins found in the blood of people newly diagnosed with Type 1 diabetes. They are also found in people who may be developing Type 1 diabetes. The presence of ICA indicates that the body's immune system has been damaging beta cells in the pancreas.

ISLET CELLS - Groups of cells located in the pancreas that make hormones that help the body break down and use food. For example, alpha cells make glucagon and beta cells make insulin. Also called Islets of Langerhans (LANG-er-hahns).

IV PREP - IV Prep Antiseptic Wipes by Smith & Nephew. An antiseptic and adhesive wipe for preparation of the skin prior to an pump or CGM insertion.

KETONES - The human body normally runs on glucose that's produced when the body breaks down carbohydrates. But when your body doesn't have enough glucose or insulin to use the glucose, your body starts breaking down fats for energy. Ketones are byproducts of this breakdown. ... Ketones can make your blood acidic.

LANCET - A spring-loaded device used to prick the skin with a small needle to obtain a drop of blood for blood glucose testing.

LIPOHYPERTROPHY - An overgrowth of fatty tissue caused by not changing infusion sites.

LIVER DUMP - The liver is like your own personal EMT; when it senses that your blood sugar is too low, it "dumps" some glycogen into your system to raise the blood sugar levels.

MDI - Multiple Daily Injections.

MINI GLUC - Mini-dose glucagon rescue, using subcutaneous injections, is effective in managing type 1 diabetes during episodes of impending hypoglycemia due to gastroenteritis or poor oral intake of carbohydrate. Mini Gluc uses a smaller amount of the glucagon rescue. 

MOD - Mother of a T1 Diabetic

MODUCATE - To correct someone's misconception or enlighten someone about T1D based on your gained knowledge as a MOD.

PDM - Personal Diabetes Manager, specifically the device used to operate the OmniPod insulin delivery system. https://www.myomnipod.com/

POD - Wearable tubeless insulin delivery system developed my Insulet Corporation. The pod is half of the OmniPod insulin delivery system. The pod is controlled by the PDM.

POKER - Another name for a Lancet device which is used to prick the skin with a small needle to obtain a drop of blood for blood glucose monitoring.

PRE-BOLUS - Delivering an insulin bolus prior to a meal.

RECEIVER - The potion of a continuous glucose monitoring system that receives data from the transmitter that is connected to the sensor worn by the T1D via Bluetooth. The receiver displays glucose levels and trends. It is the size and weight of a cell phone.

SENSOR - The sensor is a flexible round electrode wire that goes just under the skin to read glucose levels in tissue fluid. It attaches to the skin with an adhesive patch.

SPIKE - A rapid rise in blood sugar level.

SQUARE WAVE BOLUS - Square Wave bolus delivers a bolus evenly over a period of time (20 minutes to 8 hours). This bolus can be used for insulin delivery when you have eaten a long meal with extended snacking. It can also be useful if you have delayed food digestion due to gastroparesis or meals high in fat.

SUGAR SURFING - A method of blood sugar management that depends of frequent user input and data analysis to minimize roller coaster blood sugars and stay in the target range. 

SWAG - Scientific Wild Ass Guess. This term means that you are using logic, experience and guessing to figure out the amount of carbs in a meal so that you can take a wild guess at the amount of insulin to give.

TRANSMITTER - The transmitter is a little device that snaps into the sensor patch of the CGM; it sends information via wireless radio frequency to the receiver every 5 minutes.

UNICORN - Just like the mythical magical creature, a perfect 100 on the meter is referred to as a unicorn.Another type of unicorn can happen when the meter and the CGM display the same number.


There you have it!  Reference it often 

The Reality of it ...

I've been crying all morning.  I saw posts last night on Facebook that Mr. Todd Kolden passed away suddenly.  While I've never met the man, his wife, Robi, is the music teacher at my kids' school.  Last year during our 504 Meeting, she told me her husband was a T1 so she knew a little about the disease.  So when I saw posts, I had hoped his passing wasn't related to diabetes.  Sadly, I learned today, that in fact, it was. 


Due to Trey being high and having large ketones today, Jordan ran to the school to pick him up.  The principal told Jordan about Todd.  Apparently he was on vacation and didn't realize his pump had a malfunction and by the time he went to the hospital, his sugar was 1200 and he was in DKA. 

Friends ... this could be Trey.  This could be Trey Bagwell.  This could be Uncle Jeff.  This could be anyone that you know who is a Type 1 diabetic.  Thankfully, the three men mentioned above all have the CGM  -- which apparently Todd didn't have.  (insert my gripe about insurance companies saying the CGM isn't medically necessary and refusing to pay for it) If Todd had a CGM, he would probably be here today.  I just can't stop thinking about it.

My own Trey had large ketones and high sugar today - and actually 7 hours last night.  After changing out his pump this morning and increasing his insulin - he came down in no-time.  Trey too had a pump malfunction and if we didn't have the CGM telling us his sugar was 300 this morning ... we wouldn't have known.  If he would've went to school all day - by the time he got home I cannot imagine what state he would be in.  He didn't have any symptoms of DKA other than high sugars.

DKA usually develops slowly. But when vomiting occurs, this life-threatening condition can develop in a few hours. Early symptoms include the following:

• Thirst or a very dry mouth
• Frequent urination
• High blood glucose (blood sugar) levels
• High levels of ketones in the urine

Then, other symptoms appear:

• Constantly feeling tired
• Dry or flushed skin
• Nausea, vomiting, or abdominal pain
  (Vomiting can be caused by many illnesses, not just ketoacidosis. If vomiting continues for more than 2 hours, contact your health care provider.)
• Difficulty breathing
• Fruity odor on breath
• A hard time paying attention, or confusion

What Causes DKA?

Here are three basic reasons for moderate or large amounts of ketones:

• Not enough insulin
  Maybe you did not inject enough insulin. Or your body could need more insulin than usual because of illness.
• Not enough food
  When you're sick, you often don't feel like eating, sometimes resulting in high ketone levels. High levels may also occur when you miss a meal.
• Insulin reaction (low blood glucose)
  If testing shows high ketone levels in the morning, you may have had an insulin reaction while asleep.

 Type 1 Diabetes can be fatal.  Most people don't associate T1D with death.  They might think of sweet foods and missing limbs or blindness.  If Type 1 Diabetics don't get insulin - they die. 

The pump is wonderful.  I'm glad we have it.  It doesn't just save Trey, it could also kill him.  It's a machine - it has malfunctions.  The tubes can get kinked.  The cannula inserted into his belly could get bent, not allowing insulin to flow properly. 

Many people assume that because you have a pump, you're in the clear.  Not true.  Also, if you give yourself shots, you could still encounter issues with things like air-bubbles. 

We need a cure.  We need to educate people on the truth about Type 1 Diabetes.  That it CAN be fatal and even the very 'best' diabetic can lose his/her life to the disease.  The person who watches their sugars carefully can go to bed at 77 blood sugar and never wake up again because the pump didn't do what it was supposed to, you didn't hear your CGM alarm or you don't have the CGM, and you died due to DKA.  This was Trey guys ... Trey went to bed at sugar of 77 and at midnight he was 300.  If he didn't have a CGM, I would get up once around 2pm to check his blood sugar and I can't imagine what I would've found.  It could've been too late. 
 
Reality.  No sugar coating (no pun intended) it -- Type 1 Diabetes can kill you.  It can kill my Treybaby.  I'll never stop worrying - ever - and I'll never stop praying for a cure - ever - and I'll educate people and talk about T1 until I'm blue in the face - forever. 

Go hug your husband/wife, son/daughter and loved ones .... Mrs Kolden is a widow because T1 took her husband from her.  F.U. T1D.

The Big Questions

I've heard it several times in the last year and a half.  "God sure knew what he was doing when he made you Trey's mommy." I appreciate the words - truly - but sometimes I wonder what that even really means.  I mean, it's almost a punishment, isn't it?  Like a baby being born with cancer ... God picked that mom to have that particular child, right?  So why would God pick a death sentence and so much heartache for that poor mom?  Does God give us diseases and illness?  I mean, aren't we taught that God creates everything ... So did he create diabetes as well?

Tough questions.  Questions I ask sometimes and questions I wonder about, but I don't think anyone really knows the answer to those.  We all have a theory or our own beliefs, but no one can say with 100% certainty that God did or did not create this bad stuff.

What I do know is that I am Trey's mom and Trey does have Type 1 Diabetes and we do fight it every single day.  I know that I give 100% to that child and his illness and I know that it leaves me crabby, tired, defeated and boring.  I know that the disease is in control.  I know that no matter what I do, I won't ever be able to take it away from him.  I know that I worry myself sick because of T1.  I sometimes think about him going out on his first date, his first vacation away without me, his first week of college and his children some day.

Before Trey was diagnosed, I had made the comment to my best friend that I sometimes wonder if Trey would have a short life ... I wondered if he would die at a young age.  Trey is a kid who has so much life in him.  People are drawn to him like a bee to a flower.  We have taken him to hockey games and races in different states and he's always either on the JumboTron's, in photographs or making new important friends.  It sometimes blows my mind.  What scared me is that when you would read of younger children who die ... Their obits were never about how the kid didn't do anything, no one liked him, he kept to himself.  It was always about how full of life the kid was, always smiling and the star player for the team.  Always!  I see that in my Trey.

His diagnoses scared me for so many reasons and I'm not kidding when I say one of the first things that popped into my mind after hearing 'Type 1 Diabetes' was this is it ... He's doing to die young. There is still that fear, I won't lie. But I think after having a better understanding of T1 I don't think of it as often as I used to.

We were given this for a reason.  I firmly believe one of those reasons was to educate other people.  While I'm very much an introverted person, I am not afraid to speak up and be very articulate when it comes to something I know well and something I am passionate about.  (People were surprised I sold Norwex because I had to get up in front of people and talk)  I don't have this blog or Trey's T1D Facebook page for sympathy.  I have those so I can educate people. I need people who read that page, to inform others.  Stop the stigma that T1 = obesity and sugar. 

I also am a self proclaimed control freak (sometimes! Over certain things anyway).  I can't control diabetes.  I've been shown who really is in control of things.  As much as I try to do the right things and carefully count carbs and administer the perfect amount of insulin ... diabetes is going to do what diabetes wants. 

I was going through some personal struggles when Trey was diagnosed.  Without getting into details, I will say that his diagnoses came at the perfect time.  I had just lost my job at Wyndham due to the relocation; I was going to be opening my own daycare; and I could be home to take care of him those first months.  Without taking anything away from his daycare provider at the time, there is no way she could've handled what T1 demanded. 

I've always been a faithful person, understanding that everything happens for a reason.  I trusted God to help guide us through this awful time and to be present.  There were times I was angry, it's true, but all in all, when I look at all the blessings in my life, I realize that God doesn't make mistakes.  He gives us challenges and he DOES give us more than we can handle sometimes.  He gives us more so we lean on him to handle what we can't.  My faith is stronger than ever and on those days I am reduced to tears and want to throw in the towel, I feel him lift me up and say, "You can't quit on him ... we got this." 

And lastly, I feel that because of T1, we have met some people we never would've otherwise.  I've been over this in my blogs many times, but it's true.  Every time I hear of someone I know diagnosed or some young child diagnosed my eyes swell with tears and I want to reach out and say, "You're not alone, momma.  I'm here for you.  I know what you're going through, I know it well.  Lean on me." I hope I've helped these people some.  While I can't take it away from them either, I can listen and listening is something I've always done well.  Sometimes all we need to hear is that we are doing all we can and that T1 isn't fair.  Sometimes we just need a hug.  Sometimes we just need to yell and scream and then cry about it to someone that truly understands and doesn't judge or roll their eyes with annoyance.  Sometimes we need a break ... a real fucking break from it all.  Trying to find someone to take care of your T1 so you can go to a movie with your husband or take a quick mini-vacation some weekend is almost impossible.  Sometimes we need that!!

 Diabetes is 24/7/365 and we mommas need a break ... all momma's need a break ... a momma of a T1 needs it so badly because I guarantee she's exhausted.  She's not sleeping 8 hours, she's not eating right. She's constantly figuring out what to feed her T1. She's on hold with the insurance company to order supplies because the 60 day supply lasted just 50. She's waiting for a call back from the Endocrinologist regarding some insulin changes because no matter what happens, he stays higher than 250 most of the day. She's grumpy but she's worried sick and she isn't just thinking about what could happen at the football game tonight, she's thinking about his first day away at college and if he will remember to dose himself after a night of partying even though he's not 21. So.  Many.  Worries.