Head-Fi.org › Forums › Misc.-Category Forums › Members' Lounge (General Discussion) › Themed Monthly Avatar Committee (TMAC) discussion thread
New Posts  All Forums:Forum Nav:

Themed Monthly Avatar Committee (TMAC) discussion thread - Page 673

post #10081 of 11290
Quote:
Originally Posted by billybob_jcv View Post Warning: Spoiler! (Click to show)

Thanks guys!

It's a very well known fact that support from family & friends is one of the very best ways to deal with a universe that takes a cr@p on your head. My family has never kept our challenges a secret, and if I can use this as a way to increase awareness, I'll gladly use it. So - a little background on the last 14 years...

My daughter has Type 1 Diabetes. She was diagnosed when she was 20 months old and she is now 16 years old. Type 1 Diabetes (this used to be known as "juvenile diabetes") is a chronic, progressive and (currently) incurable condition. It is NOT the same as Type 2 Diabetes (formerly known as "adult diabetes"). Thanks to Wilford Brimley, Type 2 Diabetes is what the vast majority of people think of when they hear the word "Diabetes". Here's the difference...

Type 1 Diabetes is an autoimmune disease. One day, your own body's immune system loses all logical & rational thought, and decides that the insulin producing cells in your pancreas are a foreign body that Must Be Destroyed. Unfortunately, your immune system is very, very good as destroying invaders - and faster than you can say "Bob's your Uncle", your pancreas no longer has ANY insulin producing cells. Those cells CANNOT be regenerated, once they are gone, they are gone FOREVER. Without the ability to produce insulin, you are seriously screwed. All you can do is replace the insulin yourself. However, there is no ability to take insulin orally. Stomach acid destroys insulin. You can ONLY inject insulin. So you have to give yourself injections several times a day. BUT... Too much insulin is ALSO bad and very dangerous. You have to carefully control the amount of insulin in your body, and the amount you need varies based on a couple of dozen interrelated variables, eg, food, exercise, mood, stress, temperature, age, hormones, sleep, etc, etc. You have to poke your finger to get a drop of blood 4-6 times per day, test your blood glucose level, and then administer the insulin. There are insulin pumps that are worn continuously and are programmed to give different amounts of insulin throughout the day - but you still have to adjust manually based on what you eat, etc. OK - that's Type 1. Many Type 1 patients are first diagnosed between the ages of 9-15, which is where the term "juvenile diabetes" came from. That's not always true - and it can appear in both very young babies and older adults.

Type 2 Diabetes is a completely different animal. It is NOT an autoimmune disease. With Type 2, your pancreas can still produce insulin, however your body's ability to properly control the amount of insulin produced has started to go wacky. In addition, you might have become "insulin resistant", meaning that even though your body is producing insulin, your body isn't capable of using it correctly. In many cases, Type 2 Diabetes CAN be controlled, especially if it is caught early enough. Losing weight, modifying diet, taking drugs & exercising more can help your body regulate and use the insulin you can still produce. If you can't control your Type 2 Diabetes, then you may ultimately require insulin injections just like a Type 1.

Recently, there has also been research that indicates there is a third type of Diabetes, unofficially called "Type 1.5 Diabetes", more properly known as "Latent Autoimmune Diabetes in Adults" (LADA). This has some characteristics of both Type 1 & 2. I don't know much about Type 1.5 (but I'm trying to learn more).

OK - so - my daughter has had Type 1 for 14 years. She wears the latest in insulin pump and wearable blood glucose monitor technology. The last 14 years were harder than I could have ever imagined. For a Type 1, getting the flu is not just staying home from school for a couple of days - it's a life-threatening event that can cause dehydration, horrible low or high blood glucose levels, fainting, seizures and a hospital visit. Or, it might just mean staying home from school for a couple of days. But, at 16, she's made it through the good & bad and she is doing great. She manages all of her own diabetes care, and she does it better than we every could - which is absolutely as it should be - it's her body.

This brings us to the present, or to be more precise, last Friday night. My daughter has an older brother. My son is 22 years old. On Friday, he was diagnosed with Type 1 Diabetes - 14 years after his sister. After 14 years of watching his sister survive all the trials and challenges of Type 1 Diabetes, he now must face all of this too.


I'm going to end the story here. I could talk much more about my son, diabetes, depression, anger, grief, etc, etc - but this is enough catharsis for one posting...

 

I have broad shoulders for you; the family. And I'm with y'all every step of the way.

post #10082 of 11290
Warning: Spoiler! (Click to show)

It's a very well known fact that support from family & friends is one of the very best ways to deal with a universe that takes a cr@p on your head. My family has never kept our challenges a secret, and if I can use this as a way to increase awareness, I'll gladly use it. So - a little background on the last 14 years...

My daughter has Type 1 Diabetes. She was diagnosed when she was 20 months old and she is now 16 years old. Type 1 Diabetes (this used to be known as "juvenile diabetes") is a chronic, progressive and (currently) incurable condition. It is NOT the same as Type 2 Diabetes (formerly known as "adult diabetes"). Thanks to Wilford Brimley, Type 2 Diabetes is what the vast majority of people think of when they hear the word "Diabetes". Here's the difference...

Type 1 Diabetes is an autoimmune disease. One day, your own body's immune system loses all logical & rational thought, and decides that the insulin producing cells in your pancreas are a foreign body that Must Be Destroyed. Unfortunately, your immune system is very, very good as destroying invaders - and faster than you can say "Bob's your Uncle", your pancreas no longer has ANY insulin producing cells. Those cells CANNOT be regenerated, once they are gone, they are gone FOREVER. Without the ability to produce insulin, you are seriously screwed. All you can do is replace the insulin yourself. However, there is no ability to take insulin orally. Stomach acid destroys insulin. You can ONLY inject insulin. So you have to give yourself injections several times a day. BUT... Too much insulin is ALSO bad and very dangerous. You have to carefully control the amount of insulin in your body, and the amount you need varies based on a couple of dozen interrelated variables, eg, food, exercise, mood, stress, temperature, age, hormones, sleep, etc, etc. You have to poke your finger to get a drop of blood 4-6 times per day, test your blood glucose level, and then administer the insulin. There are insulin pumps that are worn continuously and are programmed to give different amounts of insulin throughout the day - but you still have to adjust manually based on what you eat, etc. OK - that's Type 1. Many Type 1 patients are first diagnosed between the ages of 9-15, which is where the term "juvenile diabetes" came from. That's not always true - and it can appear in both very young babies and older adults.

Type 2 Diabetes is a completely different animal. It is NOT an autoimmune disease. With Type 2, your pancreas can still produce insulin, however your body's ability to properly control the amount of insulin produced has started to go wacky. In addition, you might have become "insulin resistant", meaning that even though your body is producing insulin, your body isn't capable of using it correctly. In many cases, Type 2 Diabetes CAN be controlled, especially if it is caught early enough. Losing weight, modifying diet, taking drugs & exercising more can help your body regulate and use the insulin you can still produce. If you can't control your Type 2 Diabetes, then you may ultimately require insulin injections just like a Type 1.

Recently, there has also been research that indicates there is a third type of Diabetes, unofficially called "Type 1.5 Diabetes", more properly known as "Latent Autoimmune Diabetes in Adults" (LADA). This has some characteristics of both Type 1 & 2. I don't know much about Type 1.5 (but I'm trying to learn more).

OK - so - my daughter has had Type 1 for 14 years. She wears the latest in insulin pump and wearable blood glucose monitor technology. The last 14 years were harder than I could have ever imagined. For a Type 1, getting the flu is not just staying home from school for a couple of days - it's a life-threatening event that can cause dehydration, horrible low or high blood glucose levels, fainting, seizures and a hospital visit. Or, it might just mean staying home from school for a couple of days. But, at 16, she's made it through the good & bad and she is doing great. She manages all of her own diabetes care, and she does it better than we every could - which is absolutely as it should be - it's her body.



This brings us to the present, or to be more precise, last Friday night. My daughter has an older brother. My son is 22 years old. On Friday, he was diagnosed with Type 1 Diabetes - 14 years after his sister. After 14 years of watching his sister survive all the trials and challenges of Type 1 Diabetes, he now must face all of this too.

I'm going to end the story here. I could talk much more about my son, diabetes, depression, anger, grief, etc, etc - but this is enough catharsis for one posting...

 

I'm in too. I wish your son, you, and the rest of your family all the best.

post #10083 of 11290
For anyone wanting to see the type of work that the JDRF does, check out this video:



The artificial pancreas is not yet available outside of clinical trials. The best guess is that FDA approval will take another 5 years. Why so slow? Please ask your Senators & Congressmen/women that exact question!!

I wonder what DAC & OpAmp are in it?? tongue.gif


Did I mention how much you guys all ROCK!!! I've never been prouder to be a member of head-fi & TMAC!!!
post #10084 of 11290
Quote:
Originally Posted by billybob_jcv View Post

If you can't control your Type 2 Diabetes, then you may ultimately require insulin injections just like a Type 1.

Words are very powerful and while I understand first hand what you mean in your description of Type 2 Diabetes, there is a broad, inaccurate public perception that Type 2 Diabetes is somehow brought on by the afflicted individual's lack of self control regarding diet and exercise.

My symptoms became noticeable when I was parched beyond belief and could not hold my bladder over a period of a few days.
After blacking out at home, I fortunately came to and took a cab to the hospital.
The blood glucose reading was almost 40 mmol/L (Canada: millimoles per liter = USA: 720 milligrams/deciliter).
Normal BG sits around 5.5 mmol/L or 100 mg/dl.

I was admitted with hyperglycemia and the Blood Glucose could not be stabilized with Metformin.
Bang.Game changer.
Insulin dependent Type 2 Diabetes in 2011, right out of the gate.

It wasn't until just this year that the Endocrinologist and I finally tweaked a regime that keeps things in check.
Titration of insulin requirements with diet is part art and science, I've found.
Every day is now a ritual of 3 heart related pills, 3 Metformin tablets, six needle injections and checking blood glucose 3 times.

I am one of the few people in the province to use the newer injected drug Victoza (Liraglutide, insulin stimulant) combined with Levemir (long acting insulin) and Novorapid (rapid acting insulin).
It works for now, stayin' alive with insulin...
All the best.

"Genetics loads the gun, environment and lifestyle sometimes pulls the trigger."
Edited by 5aces - 11/5/13 at 12:42pm
post #10085 of 11290

"Genetics loads the gun, environment and lifestyle sometimes pulls the trigger"

 

 

 

Amen brother - AMEN!!!

post #10086 of 11290
@billy : Just got caught up reading the thread and read your post. I just became a dad for the first time relatively recently (he turns 3 in Dec) and I'm overly protective and a worry wart. I can't fathom what you've gone through. I'd go nuts worrying about it all the time so I feel for you. Best wishes to you and your family. smily_headphones1.gif
post #10087 of 11290
Quote:
Originally Posted by 5aces View Post

Words are very powerful and while I understand first hand what you mean in your description of Type 2 Diabetes, there is a broad, inaccurate public perception that Type 2 Diabetes is somehow brought on by the afflicted individual's lack of self control regarding diet and exercise.

My symptoms became noticeable when I was parched beyond belief and could not hold my bladder over a period of a few days.
After blacking out at home, I fortunately came to and took a cab to the hospital.
The blood glucose reading was almost 40 mmol/L (Canada: millimoles per liter = USA: 720 milligrams/deciliter).
Normal BG sits around 5.5 mmol/L or 100 mg/dl.

I was admitted with hyperglycemia and the Blood Glucose could not be stabilized with Metformin.
Bang.Game changer.
Insulin dependent Type 2 Diabetes in 2011, right out of the gate.

It wasn't until just this year that the Endocrinologist and I finally tweaked a regime that keeps things in check.
Titration of insulin requirements with diet is part art and science, I've found.
Every day is now a ritual of 3 heart related pills, 3 Metformin tablets, six needle injections and checking blood glucose 3 times.

I am one of the few people in the province to use the newer injected drug Victoza (Liraglutide, insulin stimulant) combined with Levemir (long acting insulin) and Novorapid (rapid acting insulin).
It works for now, stayin' alive with insulin...
All the best.

"Genetics loads the gun, environment and lifestyle sometimes pulls the trigger."

Absolutely! If I implied something lacking on the part of the patient - I apologize - that was certainly not my intention. A better choice of words might have been: "If the Type 2 Diabetes progresses beyond the ability to be managed with diet & drugs, then you may ultimately require insulin just like a Type 1."

Type 1 Diabetes patients often feel like the whole world thinks only of Type 2 Diabetes. This was especially true when my daughter was first diagnosed. Even the insurance and medical industries seemed to only focus on adults with Type 2. At the time, we had medical insurance that would ONLY pay for syringes that were in no way appropriate for a 20 month old baby. They seemed completely oblivious to the idea that there were also kids with Diabetes. I'm afraid this has made me somewhat over-focused on the needs of Type 1.

BTW - I recently heard a new term: "Type 3" - which referred to all the friends & family of someone with Diabetes!
post #10088 of 11290

Sorry to hear the news billybob_jcv all the best to you and your family.

 

My grandson was diagnosed Type 1 at 16 months and we nearly lost him if it wasn't for his mother's persistence... The hospital had sent him home twice saying that he just had an ear infection, luckily she took him to a different hospital the third time and he was properly diagnosed. If she would have gone on the recommendation of the first hospital, he would not be here today. He's 7 now and where they live in New Brunswick insulin pumps are not covered under health insurance like they are here in Nova Scotia. I'd love to be able to get the little guy a pump but it is well out of my financial ability. One day there will be a cure for this and with all the help that the JDRF can get, they will be one step closer.

post #10089 of 11290

I'll join in too.

 

@ billybob_jcv

I am so sorry to hear the news, and I wish you and your family good health in the future. :/

post #10090 of 11290
Quote:
Originally Posted by TrollDragon View Post

Sorry to hear the news billybob_jcv all the best to you and your family.

My grandson was diagnosed Type 1 at 16 months and we nearly lost him if it wasn't for his mother's persistence... The hospital had sent him home twice saying that he just had an ear infection, luckily she took him to a different hospital the third time and he was properly diagnosed. If she would have gone on the recommendation of the first hospital, he would not be here today. He's 7 now and where they live in New Brunswick insulin pumps are not covered under health insurance like they are here in Nova Scotia. I'd love to be able to get the little guy a pump but it is well out of my financial ability. One day there will be a cure for this and with all the help that the JDRF can get, they will be one step closer.

That's really too bad about not being able to get a pump. Is that an age restriction, or can no one in New Brunswick get a pump? Either way, that's really short-sighted. The pump is a HUGE improvement, even for kids. When my daughter first got her pump, she was still in grammar school. The school would not let her test her blood sugar in the classroom, so she would have to go to the office mid-morning and before lunch. She would test herself, then the school health aide would text her test reading to my wife, and my wife would text back the size of the insulin dose to put in the pump. The school would not touch the pump, so my daughter would enter the dose in the pump, then show it to the health aide. The health aide would verify, then my daughter would punch the button to deliver the dose. All that complexity was NOT our requirement - it was the schools. We would have been perfectly happy giving my daughter a cell phone and letting her do the whole thing remotely with my wife giving dose instructions. Still, that was a HUGE improvement over syringes. The school would not give injections, and because my daughter was too young to give her own shots, my wife or I had to go to the school every time she needed an injection. Since she always needed an injection at lunch, that meant at least one visit per day and often two. My wife went to part-time work, and then ultimately quite her job so she could be available to provide care, go on field trips, etc. Once my daughter got into high school, the rules relaxed - she still couldn't test in the classroom, but she could just go into the bathroom and didn't have to go to the office. The school still made us keep "diabetes supplies" in the office - but we never used them. Now that she's at an independent study school, she can do whatever she wants.

The schools were a CONSTANT battle. They were constantly inventing their own rules that either made no sense or were just flat illegal. We had ONE teacher confront my daughter because he thought her pump was a cell phone, and she ordered her to take it off. She lifted-up her shirt, showed him the site where the tubing went into her skin and said "It's an insulin pump, I need it to live!" The teacher backed-off - and we came down on that school like a ton of bricks. The school principal and the school district superintendent knew us by sight! We always hand-picked my daughter's teachers and we made each of them and the office staff get training from us (not the school nurse) on Diabetes care. The district nurse was the worst - she was positive her 20 year-old medical training on "sugar diabetes" was far superior to our 10 years of 24/7 daily work in the trenches. We always went over her head to the superintendent and simply ignored the nurse. We would present the superintendent with current information from the JDRF, ADA, and the State & Federal gov'ts, and simply shut the nurse out. Stupid hag! mad.gif
Edited by billybob_jcv - 11/5/13 at 4:44pm
post #10091 of 11290
Quote:
Originally Posted by billybob_jcv View Post

A better choice of words might have been: "If the Type 2 Diabetes progresses beyond the ability to be managed with diet & drugs, then you may ultimately require insulin just like a Type 1."

Type 1 Diabetes patients often feel like the whole world thinks only of Type 2 Diabetes.

Those are the exact words I thought of when I read your original post, you put it very succinctly, no apology required with your clarification.
Although, there may not even be a period of progression for Type 2, it can be sudden onset, as in my case.
My endo said: "once the gates are broken, there is no going back".

Interesting observation on Type 1 vs. Type 2 where you live.
In Ontario only Type 1 patients qualify for a provincial health insurance insulin pump.
They also have an easier time qualifying for the disability tax credit to assist with the extra expenses of the condition.
Even with an 80/20 copay plan, it still can be financial burden.
Type 1, to reiterate, is also more 'acceptable' here, as the patient had no choice that their pancreas quit, whereas Type 2 get lectures about "should have looked after yourself better" from the general populace.

I often refer to the life story of 81 year old actor Peter O'Toole, who had his pancreas and a large portion of his stomach removed in 1976.
Insulin-dependent diabetes from that time, accompanied with his hard living lifestyle is proof you can enjoy a long life afterwards.

Yeah, Type 3 is for the worried people around us, ha !
Edited by 5aces - 11/5/13 at 5:08pm
post #10092 of 11290
IIRC, I think the latest Medtronic pump+CGM system is ~$8000 USD for a cash patient that does not have insurance. Then you have to add in the monthly cost of infusion sets, pump cartridges, CGM sensors, etc, etc, etc!
post #10093 of 11290


This is the system I am on, Novo Nordisk penfill, you dial up your required dose and inject into your abdomen.

Cartridges of insulin are dropped into the pen and a 32 gauge, 5 mm needle tip is twisted on the end or NovoTwist as they call it.

The Victoza unit is a complete disposable pen, no cartridge, one shot a day.

Red pen is fast acting insulin to be used each time before the three meals and silver pen is slow release, one dose when you rise and one dose before bed.

These medications require refrigeration and are good for approximately 30 days after removing from the fridge.
Edited by 5aces - 11/5/13 at 5:42pm
post #10094 of 11290
My son is using the Lilly pens. Lantus once a day for long-acting and Humalog for fast-acting. We'll get him on the pump as soon as we can. Most Endos wait several months to make sure you are stabilized and there is enough data to build a delivery model for the pump.




One of the challenges with really little babies is that the pen can't be set to give a low enough dose. We were sometimes giving insulin in 0.5 or even 0.25 unit increments. Even with special ordering the smallest syringes we could find, about the best we could do was guess at the dosage by interpolating between the lines. Some doctors will have parents dilute with sterile water, but our Endo was against diluting.
post #10095 of 11290
New Posts  All Forums:Forum Nav:
  Return Home
Head-Fi.org › Forums › Misc.-Category Forums › Members' Lounge (General Discussion) › Themed Monthly Avatar Committee (TMAC) discussion thread