Monday, January 28, 2013

Good friends

They say good friends are hard to find, but I have been blessed with so many! My kids have been blessed with good friends as well. Seth has a few friends that are really special to me.

Seth has lived across the street from us for almost 6 years, but the boys have known each other almost 10. They not only have the same first name, but identical initials. Their birthdays are 4 days apart. To avoid confusion, we call him Steve (funny story for another day). Why is he such a great friend? Steve's dad is t1, so he knows. He just knows. But he never treats Seth differently nor is he afraid to be around him. He is the same friend he was before diagnosis. T1 parents know that is huge.

Brian is a friend from church, and he also plays in a band with Seth.  He also has never treated Seth differently because of diabetes. He willingly learned what signs he needed to watch for, as well as how to use Glucagon. His mom is a nurse, so she quizzed him to make sure he had it down.

Jordan is also a friend from church, and in the same band. He was the first friend to come visit Seth after he got home from the hospital. That will always stay with me. Jordan's dad was his first visitor in the hospital. They are just a really special family. Jordan's mom told me the other day that the band plays a game they call Pass the Seth. They hook together 4 of those little rolly carts from elementary PE, and Seth lays down on them. The boys take turns grabbing him by the feet and flinging him across the gym to another person. Maybe a little dangerous, but so fun! A normal teen thing.

The drumline at school, the DI team, church friends, there are many friends surrounding my kiddo.  We are truly blessed. With the support of so many wonderful friends, he will KDA.

Seth, Steve,  and Josh playing video games. 

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Sunday, January 27, 2013

The Quest for Insulin

Jason's insulin dose has been undergoing massive changes recently. His doctor started him out conservatively, but they have made several increases the last few weeks. Because of that, he realized on Thursday night that he would run out of insulin over the weekend. So, he called the pharmacy Friday morning. The insurance company wouldn't pay for the refill until Monday.  No problem, the doctor authorized an increase in the dose. Problem solved, right?

Wrong! The insulin the pharmacy had was expired, but being the awesome pharmacist she is, she transferred the prescription to the Wal-Mart pharmacy nearest Jason's work. Problem solved.

Wrong again! When he got there after work, they were out of it! So they called several other stores in the area and located the precious insulin he needs to live. I got home from work and off we went to a neighboring town. We stood in line, and when it was his turn they had no record of him in the computer. I was beginning to get a little anxious. Then the pharmacist had a thought....did they perhaps call the Neighborhood Market? He looked it up, and sure enough that's where it was. And we actually had time to get there before they closed. We made it, bought the insulin,  then had a lovely dinner together. Whew! It's hard work to KDA!

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Monday, January 21, 2013

Diabetes, drumming, and dozing

Friends often ask how I can stand to listen to Seth drumming every day.  You see,  he is in not one,  but 2, local bands in addition to high school band and jazz band. He loves to drum and he is very good. But it is loud. Some days I have to ask him to stop before he is finished, but generally I just let him practice as much as he wants. Why? It's great exercise and helps keep his blood sugar in a good range.  But even more..... he doesn't think about diabetes when he is drumming.  So I let him drum.

I have also discovered that I can nap while he drums.  Sounds weird,  but I think I figured it out. When I was pregnant with Seth,  Josh was 2. I was exhausted all the time,  so when I needed a nap I would give him a toy that made noise. If the noise stopped, I woke up. Not a fantastic parenting technique, but one that arose out of necessity. Now I am finding myself doing the same thing 16 years later. I can sleep while he drums. The noise means he is ok. When it stops, I wake up.

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Sunday, January 6, 2013

Mythbusters, Diabetes-style

Or, what not to say to a type 1 parent or person with type 1. Here are some I have experienced, as well as some I have heard from others.

1. Should he be eating that? Yes, he can eat anything you can. He just has to calculate and inject for all carbs. Don't be surprised if you get the response, "Why, is it poison?"
2. Has he stabilized yet? Type 1 diabetics are never stable. There are hundreds, if not thousands, of factors that affect blood sugar levels. We count carbs, calculate, test, and inject. If numbers are too high, we correct. Too low, we treat. But he will never have "stable" numbers. Every day is different.
3. I could never give my child shots. Yes, you could. If their life depended on it, I assure you that you could and would.
4. He takes insulin, so he's fine, right? Insulin is a treatment, life support. Not a cure. As long as we calculate everything right, and none of the many unknown factors interfere, he is ok. But things change very quickly some days.
5. It could be so much worse/at least it isn't cancer/at least it is treatable. This one doesn't bother me personally, but I hear it really bothers lots of d parents. There is even slight disagreement within our household. Best not to say it.
6. Wouldn't he be better if he had a pump? A pump is one method for delivering insulin. It has advantages and disadvantages. It's not a cure.
7. Oh, he has a pump. He must have a bad case. See #6, and there is no "bad case." A pancreas that doesn't produce insulin is bad. Period.
8. Does he have the bad kind of diabetes? See #7.
9. He'll grow out of that, right? No, he will have type 1 diabetes and require insulin the rest of his life, or until a cure is found.
10. Can't they just do a pancreas transplant? An organ transplant is MAJOR! It would be a trade-off of insulin for anti-rejection drugs. Those drugs tend to have some pretty powerful side effects. Sometimes a pancreas transplant is done with a kidney transplant if a patient is in kidney failure. Plus,  unless the autoimmune disease is cured, type 1 could return after a transplant.
11. If he loses weight and controls his diet, he will be ok. Untrue. There is no amount of diet and exercise that can control type 1 diabetes. It requires insulin, and even then the disease is not controlled. It is simply managed, one number at a time.
12. So, he's had this his whole life and they just now found it? No, type 1 diabetes is an autoimmune disease that can develop at any time. It occurs more often in childhood and adolescence, but type 1 can develop in adults as well.
13. You get used to it, right? Um, I'm not even really sure how to respond to this one. I'm not sure you can ever get used to the fact that your child has a chronic, life-threatening illness. We just hope to get better at management. And we pray for a cure.
14. How do you have diabetes? You aren't fat! What can I even say about this? Other than being rude, weight is not a factor in developing type 1 diabetes. In fact, most type 1s are slender.
15. Who else in the family is a type 1? There is not always another family member that is type 1. Some families have several type 1s, other type 1s have no relatives with the disease.
16. So, he can't participate in sports? Actually, exercise is good for type 1s, just like it is good for everyone. Activity helps the insulin work more efficiently. There are many Olympic and professional athletes that are type 1.
17. Isn't he kind of old for being diagnosed? I thought it was a childhood illness. Type 1 is most often diagnosed in children, but can develop at any age. I read about a woman in her 60s being diagnosed recently. Type 1 diabetes does not discriminate.
18. What did you do that caused it? There is nothing that a person does to cause it, nor can anything be done to prevent it. It's an autoimmune disease that just happens.

A couple of other things Seth has heard. No mythbusting here, just statements and responses:
19. Do the shots hurt? Seth: They're better than being dead.
20. I wish I were diabetic so I could eat a lunch like yours. (Seriously, a kid said this to him at lunch.) Seth: No, you don't. You can eat anything you want without doing this (as he jabbed the needle into his tummy). Just bring what you want for lunch.

Most of these things were said by well-meaning, but uniformed, people. This is a serious disease that requires constant attention. We are learning more every day. One day, we will KDA.

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Friday, January 4, 2013

The 'firsts' start all over

After diagnosis, the 'firsts' start all over.....the first day of school, the first holidays, the first everything. Diabetes colors everything, and many things need to be adapted or relearned. However, Seth refuses to let it define who he is. It's just something he has to deal with.
At diagnosis, Seth was just discovering the independence of young adulthood. How do we preserve his independence, yet keep him safe as he learns self management? Not a simple task! He hasn't learned how to feel his lows consistently yet, so being alone just isn't safe. One thing I have done is give his friends a crash course in emergency care (low treatments, low signs, glucagon). Hopefully I haven't scarred any of them too bad.
Which brings me back to 'firsts.' Seth had his 'first' overnight away from us the other night. He plays in a local Christian rock band, and they are getting ready to record. They LOVE doing overnight rehearsals. I know 2 of the boys pretty well, parents were nearby, and it's a normal activity for my kid. I tried not to text too much, but just checked in a couple of times. He tested several times during the night, and everything was good. They even had an outing to Long John Silver's for dinner. Normal teenager stuff. In the type 1 world, that is huge.

Just one more step in our quest to KDA.

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Tuesday, January 1, 2013

Happy New Year!

Those who know me personally know that 2012 was a really rough year from many angles. Loss, frustration, illness all bombarded us and our friends/family, particularly in the last half of the year. But I will not let that define me. We are already stronger - as a family, as a couple, as friends. We will continue to grow, to face any trials that we encounter this year. But I am optimistic that this year will be a good year. Josh will continue to discover his adult self. Seth will become confident in his diabetes management as well as excelling at school and in his music ventures. Jason will find the best treatment for his newly-discovered type 1.5 and continue to excel in teaching. I will regain control of some things I have left unattended the last few months, and enjoy my new adventures in my digital classroom. I am hoping to resume swimming soon, but I would hate to be mistaken again for a New Year's resolutioner. I may wait until February....ha!

May your 2013 be a wonderful year filled with love, happiness, and good health!

And just because I think every blog should have a picture, here is my cute little fat dog roasting herself by the fire.

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