I am sitting here completely at a loss for words. My heart is overflowing and thankful does not even seem to be a big enough word.
As we have gotten deeper into our diabetic world and the world of diabetes advocacy. I have heard countless stories of people denied the medical supplies they need by their insurance companies to live their life to the fullest while managing their D. Strangers in offices thousands of miles away look at a patients name and their diagnosis on a piece of paper and decide that they should only NEED to test their blood sugar 1x a day, or X amount of insulin should be enough for the month. Countless patients and parents spend hundreds of dollars out of their pocked on a monthly basis for necessary medical supplies/medicines that insurance will not cover. Strangers look at the short term financial output and do not look at the short term AND the long term medical gain of these decisions.
Our family has been incredibly blessed to have an insurance company who is very pro-diabetes. They have covered 4 different meters for us this year as we have switched to find "the one" that is a good fit for us. They have covered an insulin pump and all the supplies for it 100% so that Seth can have the best chance at the most normal life he can live. They completely shocked me when they went against the norm and instead of fighting me and making me prove our need for a Continuous Glucose Monitoring System, they approved it because they saw the value of having this information in our D arsenal.
Today, they stunned me. In August I asked Medtronic to check with our insurance company and see if they would cover the MySentry. It is a monitoring system that communicates with Seth's CGMS system that wirelessly transmits his BG numbers to a screen that sits by my bed, but I can take it with me anywhere in my house. It will sound an alarm to wake me if he goes low, or goes high. It will eliminate my need to get up and do middle of the night checks, and I think it will help Seth feel like I am a little less naggy about his numbers because I can look at a screen rather than ask to see his pump.
Medtronic called me today to tell me that my insurance company covered the MySentry 100%. They will be shipping it out and we will receive it on Wednesday. Medtronic was excited because this helps them encourage other insurance companies to cover the equipment as well.
Once again I want to say a big ginormous thank you to my insurance company. They have been incredible and not having to fight for every little thing for Seth's care this year has made this diagnosis, just a titch easier to handle. We have enough battles to fight.
I hope every single one of you has a wonderful Thanksgiving. I will be counting my blessings...and looking at the Black Friday ads. :)
Wednesday, November 21, 2012
Wednesday, November 14, 2012
Today is Diabetes Awareness Day (DAD)...I had some great plans and true to form, D has decided it needs to take a starring role this week, swimming and wrestling are kicking my butt numbers wise. Sleep, whats that? So just know, I had some GREAT plans. :(
I planned ahead. I ordered DAD t-shirts for my whole family to wear today. They got held up with the storm on the east coast and then the company mailed them this really weird way which insures it will take the absolute longest way possible to Alaska...I have no idea when they will actually arrive. But they were ordered over 3 weeks ago. I guess this just means I am UBER prepared for next years DAD day. :)
Seth was officially Diagnosed with Type 1 Diabetes and admitted to the hospital in Diabetic Ketoacidosis earlier this year on January 4, 2012.
It has been:
- 27, 302, 400 Seconds or
- 455,040 Minutes or
- 316 Days or
- 45.143 Weeks
that we have lived with Diabetes. What does this mean? It means that since diagnosis:
- 2528= the number of times Seth has pricked his fingers to test his blood (averaging 8x a day)
- 11,060= the number of units of Insulin Seth has used to keep himself alive (11 bottles)
- 57%= the number of times Seth's BG is high when we test
- 316=the number of night checks we have done at 3 am
- $57,659.00= the cost of Seth's Diabetic care this year. Hospital x 5 days, Insulin Pump and CGMS shoot this figure right up there.
- $800.00= the cost of Seth's monthly prescriptions before insurance.
- 316= the number of days I have found a used BG strip somewhere other than the trash. The weirdest place so far was in the dishwasher, no idea how that got there.
- 6= the number of BG monitors we have gone through this year. We now have 2 main ones (Telcare) and 3 back up ones. A backup in the nurses office, Seth's wrestling bag and my purse.
- 2= average number of daily phone calls I get from Seth or someone at his school to confer with me on D care.
What I want to represent with these numbers is how consuming D is. There really is no break. It is always there, if it's not in the forefront, it is in the back of our minds at all times.
My sister took the T1D challenge for a day and she received 14 texts before opting out for the night. She said it was very eye opening to realize how often she was reminded of decision she needed to make related to D and it made her sad to think of a 13 year old always having to think about it.
And lastly...I want to thank everyone who supports us in this journey and our battle. Your support and encouragement mean the world to us and make it easier for us to fight the fight each day.
We are wearing our plain (wah) blue t-shirts today, did anyone else join us?
Monday, November 12, 2012
November 12, 2012
There are no words to describe how much this kid means to me. Today he turns 13, a teenager. I am filled with wonder and excitement as I contemplate is future. His possibilities are amazing and inspiring. Every day he comes up with something new he wants to be “when he grows up” and I love to listen to his ideas.
Right now at the top of his list:
A video game designer, or tester
Heavy Equipment Operator in the Military
Doctor who cures Diabetes (I LOVE THIS ONE!)
Seth, you are an amazing young man facing a world full of possibilities and opportunities. You bring light and joy to us and I am so blessed to call myself your mom. As you work more towards your independence, don’t forget that your dad and I are always here to guide and protect you and be your home base...and rein you in, it’s our job. Most importantly, ALWAYS remember that you can pray to your Father in Heaven for guidance and assurance in your decisions. We love you buddy.
Friday, November 9, 2012
Morbidity and Mortality
- In 2007, diabetes was listed as the underlying cause on 71,382 death certificates and was listed as a contributing factor on an additional 160,022 death certificates. This means that diabetes contributed to a total of 231,404 deaths.
I feel very strongly that it is my duty as Seth's mom, to empower him to be the best manager of his diabetes, the most vocal advocate for his medical needs and to surround himself with a strong support system so that he can be successful in his diabetic care and do his very best to minimize his diabetic complications...I will do everything within my power to ensure he is not part of these statistics.
Thursday, November 8, 2012
- Type 1 diabetes can affect many major organs in your body, including your heart, blood vessels, nerves, eyes and kidneys. Keeping your blood sugar level close to normal most of the time can dramatically reduce the risk of many complications.
- Long-term complications of type 1 diabetes develop gradually, over years. The earlier you develop diabetes — and the less controlled your blood sugar — the higher the risk of complications. Eventually, diabetes complications may be disabling or even life-threatening.
- · Heart and blood vessel disease. Diabetes dramatically increases your risk of various cardiovascular problems, including coronary artery disease with chest pain (angina), heart attack, stroke, narrowing of the arteries (atherosclerosis) and high blood pressure. In fact, about 65 percent of people who have type 1 or type 2 diabetes die of some type of heart or blood vessel disease, according to the American Heart Association.
- · Nerve damage (neuropathy). Excess sugar can injure the walls of the tiny blood vessels (capillaries) that nourish your nerves, especially in the legs. This can cause tingling, numbness, burning or pain that usually begins at the tips of the toes or fingers and gradually spreads upward. Poorly controlled blood sugar could cause you to eventually lose all sense of feeling in the affected limbs. Damage to the nerves that affect the gastrointestinal tract can cause problems with nausea, vomiting, diarrhea or constipation. For men, erectile dysfunction may be an issue.
- · Kidney damage (nephropathy). The kidneys contain millions of tiny blood vessel clusters that filter waste from your blood. Diabetes can damage this delicate filtering system. Severe damage can lead to kidney failure or irreversible end-stage kidney disease, requiring dialysis or a kidney transplant.
- · Eye damage. Diabetes can damage the blood vessels of the retina (diabetic retinopathy), potentially leading to blindness. Diabetes also increases the risk of other serious vision conditions, such as cataracts and glaucoma.
- · Foot damage. Nerve damage in the feet or poor blood flow to the feet increases the risk of various foot complications. Left untreated, cuts and blisters can become serious infections. Severe damage might require toe, foot or even leg amputation.
- · Skin and mouth conditions. Diabetes may leave you more susceptible to skin problems, including bacterial and fungal infections. Gum infections also may be a concern, especially if you have a history of poor dental hygiene.
- · Osteoporosis. Diabetes may lead to lower than normal bone mineral density, increasing your risk of osteoporosis.
- · Pregnancy complications. High blood sugar levels can be dangerous for both the mother and the baby. The risk of miscarriage, stillbirth and birth defects are increased when diabetes isn't well controlled. For the mother, diabetes increases the risk of diabetic ketoacidosis, diabetic eye problems (retinopathy), pregnancy-induced high blood pressure and preeclampsia.
- · Hearing problems. Hearing impairments occur more often in people with diabetes.
Tuesday, November 6, 2012
- Risk Factors
- There aren't many known risk factors for type 1 diabetes, though researchers continue to find new possibilities. Some known risk factors include:
- · A family history. Anyone with a parent or sibling with type 1 diabetes has a slightly increased risk of developing the condition.
- · Genetics. The presence of certain genes indicates an increased risk of developing type 1 diabetes. In some cases — usually through a clinical trial — genetic testing can be done to determine if someone who has a family history of type 1 diabetes is at increased risk of developing the condition.
- · Geography. The incidence of type 1 diabetes tends to increase as you travel away from the equator.
- · Viral exposure.
- · Low vitamin D levels. Research suggests that vitamin D may be protective against type 1 diabetes.
Monday, November 5, 2012
The exact cause of type 1 diabetes is unknown. Scientists do know that in most people with type 1 diabetes, their body's own immune system — which normally fights harmful bacteria and viruses — mistakenly destroys the insulin-producing (islet) cells in the pancreas. Genetics may play a role in this process, and exposure to certain viruses may trigger the disease.
Whatever the cause, once the islet cells are destroyed, you'll produce little or no insulin. Normally, the hormone insulin helps glucose enter your cells to provide energy to your muscles and tissues. Insulin comes from the pancreas, a gland located just behind the stomach. When everything is working properly, once you eat, the pancreas secretes insulin into the bloodstream. As insulin circulates, it acts like a key by unlocking microscopic doors that allow sugar to enter the body's cells. Insulin lowers the amount of sugar in the bloodstream, and as the blood sugar level drops, so does the secretion of insulin from the pancreas.
The liver acts as a glucose storage and manufacturing center. When insulin levels are low — when you haven't eaten in a while, for example — the liver converts stored glycogen back to glucose to keep your blood glucose level within a normal range.
In type 1 diabetes, none of this occurs because there's no insulin to let glucose into the cells. So instead of being transported into your cells, sugar builds up in your bloodstream, where it can cause life-threatening complications.
Seth was eating and drinking normally, but he lost 25 pounds in a brief period of time. He was literally starving to death because his cells were not receiving the nutrition from the food he was consuming. I look at pictures now and it is so obvious that he was sick, but seeing him every day, it was not as obvious.
However, the day before I took him to the doctor I knew in my heart what the diagnosis was going to be, something had finally clicked and all the bits and pieces of information that I had seen finally broke through the filter in my brain and I was not shocked at all when the doctor said...DIABETES.
If this blog or this information helps someone in their journey or puts a piece of information in their brain that helps them...then it has been successful.
Sunday, November 4, 2012
The Juvenile Diabetes Research Foundation is offering you the chance to walk in a T1's footsteps for a day...will you accept the challenge?
JDRF Website: "When you sign up for theT1D for a Day text challenge, you agree to receive as many as 24 text messages over a 24-hour period that simulate the constant blood sugar testing, insulin injections, and dietary decisions that confront people with T1D."
At first glance, it doesn't sound like it will be that big of a deal, or really give you a lot of insight into this condition. But IT IS! It's a way for someone without diabetes to get a very slight idea of just how pervasive Type 1 diabetes is during the course of the day. Testing blood sugars, calculating insuling doses, figuring out food choices, cramming in some exercise and figuring out why numbers don't match? That gives you just a SLIGHT sense of diabetes knocking on your door all day long. This exercise is brought to life by the JDRF.
One the statements from their website is:
"While no virtual campaign can recreate the many needles required or the physical and financial tolls of this serious disease, T1D for a Day seeks to deepen understanding of the many heroic steps our friends and loved ones with T1D take each day."
To sign up for T1D for a Day, text T1D4ADAY to 63566. You will receive a confirmation text that will cycle you through registration. Or you can CLICK HERE to sign up through the web.
Heartfelt thanks to anyone who supports a person with diabetes (PWD) everyday by being a friend or a loved one. PWD's have a heavy load to carry and having others who understand or seek to understand, means the more than you can imagine.
If you take the challenge and would like to share your experience, I would LOVE to hear it either via email (link on the right sidebar) or leave me a comment.
Saturday, November 3, 2012
Type 1 diabetes signs and symptoms can come on quickly and may include:
· Increased thirst and frequent urination. As excess sugar builds up in your bloodstream, fluid is pulled from your tissues. This may leave you thirsty. As a result, you may drink — and urinate — more than usual.
· Extreme hunger. Without enough insulin to move sugar into your cells, your muscles and organs become depleted of energy. This triggers intense hunger that may persist even after you eat. Without insulin, the sugar in your food never reaches your energy-starved tissues.
· Weight loss. Despite eating more than usual to relieve hunger, you may lose weight — sometimes rapidly. Without the energy sugar supplies, your muscle tissues and fat stores may simply shrink.
· Fatigue. If your cells are deprived of sugar, you may become tired and irritable.
· Blurred vision. If your blood sugar level is too high, fluid may be pulled from your tissues — including the lenses of your eyes. This may affect your ability to focus clearly.
I If you or someone you love is experiencing symptoms like this, please seek medical attention quickly.
Friday, November 2, 2012
Type 1 Diabetes (Juvenile Diabetes/Insulin Dependent):
Type 1 diabetes, once known as juvenile diabetes or insulin-dependent diabetes, is a chronic condition in which the pancreas produces little or no insulin, a hormone your body needs to allow sugar (glucose) to enter cells to produce energy. Although type 1 diabetes typically appears during adolescence, it can develop at any age. Despite active research, type 1 diabetes has NO CURE, although it can be managed.
I started with this because I have received advice from several people, who I am sure were very well meaning. But contrary to well meaning advice, I want and need people to understand that:
- Changing Seth's diet will not reverse Type 1 Diabetes. We count Seth's carb's at every meal as a way of counteracting them with insulin. Carb's= sugar. Any sugar Seth eats when his blood sugar is within normal range must be balanced with insulin to keep him from having too much sugar in his system. We practice healthy eating, but we also do not restrict his diet any more than we do Leah's.
- Seth MUST have insulin to live. Without it he WILL DIE.
- Seth does not have the bad kind of diabetes (just because he is on insulin). Ask any person who has any of the types of diabetes...they all suck.
- This has not gotten easier, we still work to manage this on a
day to day, hour by hour,minute by minute basis. What works one day, does not necessarily work the next. There is no autopilot for diabetes.
Diabetes struck us when Seth was 12. You can read our diagnosis story, the links are in the right hand column. If you are concerned that you or your child may have diabetes, please seek medical attention.
Thursday, November 1, 2012
November is designated as Diabetes Awareness Month...funny, last November, I had no idea how intimately familiar I would become with Diabetes.
Diabetes affects nearly 24 million Americans, that is 7.8 percent of the population.
November 14th is World Diabetes Day! A day designated to bring awareness to this disease and blue is the color assigned to Diabetes. Will you join me in wearing blue that day to help get the word out? If you wear blue take a picture, I'd LOVE to see it. You can email me a picture or a blog link, leave a link to your blog in the comments, or if you have a Facebook account and want to post a picture, make sure to tag me (Becky Sossaman Dustin) so I can check it out. If you want to share diabetes information, you could post a link to my blog, the Diabetes 101 tab would be marvelous, or the Juvenile Diabetes Research Foundation is a good source for people to find out more information.
I am dedicating myself and this blog to Diabetes Education this month. I will be focusing on both the sobering educational facts as well sharing how Diabetes is having to fit into our lives. It's a journey that's for sure...join me for the ride.