What February has in store!

Normally when you think of February you think of "love" "valentines day", or living as close as we do to Punxsutawney, PA, "Groundhogs Day". Abby's already asking when it's Groundhogs day and how many more days to count down to. But when February rolls around I think of the day our lives changed in a big way. On February 28th, 2010, Clifford was diagnosed with Type 1 diabetes. Every year after we celebrate the new year, the next thought in my head is his Dx date is coming up. This year I'd like to do something special for him to make him see that we are able to celebrate a healthy year of living with diabetes. I really started thinking more of what to do for him on this day after last night. He is scheduled for dental surgery, (baby teeth pulled, a couple fillings) on Thursday February 2nd. He is supposed to go in ahead of time because he has to fast for the general anesthesia that he will go under for the surgery, so they want to monitor his blood sugar, etc, etc. So last night we were talking more about what is going to take place, that if he wants I am allowed to follow him into the operating room (their words not mine) and be with him until he's out from the anesthesia. I think he is a bit scared by all of it. I basically explained it helped to put him to sleep so when they pulled his teeth and filled them he wouldn't feel any pain. He looked at me and asked "Why does all the bad stuff happen to me".....

That right there tells you and from previous comments that he looks at diabetes as a bad thing. I try to remain positive about it with him celebrating good numbers, etc. But it does take it's toll. So I really think this year when his diaversary comes around we need to celebrate another healthy year with diabetes. On a more positive note since he is "8" this year I got a ADA Camp brochure in the mail. I would really like for him to go to camp this summer, so here's crossing fingers that we can make that happen for him.

Sleep Deprivation... A classic normal.

I think somehow God was preparing me to handle a diabetes diagnosis in one of my children. Think about it. From before the time Clifford was born, I hardly ever slept, due to reasons out of my control, but still had a significant lack of sleep. Pregnancy didn't really help in the sleep department either. Then Clifford was born, well we all know how well newborns sleep don't we. He was in newborn sleep mode until 21 months, which btw was the time when his baby sister Abigale was born. Abby really never reached the ability to sleep through the night until she was 4, but before that time Miss Hayleigh was born and proved to be just like her siblings in the sleeping department. It wasn't until Chad helped to sleep train all of them they started sleeping through the night. But by this time I was already pregnant with the twins and uncomfortable from the get go with morning sickness that lasted all day well into 22 weeks of pregnancy. By the time the morning sickness subsided I was already too huge, and cramped inside by two bouncing baby girls that sleep just wasn't in the picture. Diabetes by the way entered into our lives shortly after we found out we were expecting.

So I like to look at the sleep deprivation as a challenge. Because if you think about it, even with diabetes in the picture I've already have been quite sleep deprived for around 9 years now. I know I can function on little to no sleep for an extended period of time. I've learned to understand just how my body works in that at the 8-9 day mark of only 2 to 3 hours of sleep per night I crash, and I crash hard. I think once I surprised myself and made it almost 2 weeks straight before hitting that sleep wall. It's pretty funny that I actually get excited when I get more than 5 hours of sleep in a night.

Although sleep deprivation is not easy for everyone. Caffeine however is our best friends in the department of lack of sleep when it comes to Diabetes. I guess in a way I am thankful for the preparation for the lack of sleep that would be created when Diabetes entered the picture, because by the time it happened, I already knew how much I could function and on how little sleep.

The Pancreas...

I've decided to dedicate this blog post to the Pancreas. you never really realize how important this little organ is until you or someone you love is hit by a diabetes diagnosis. Sure that little pancreas in the picture here seems very cute and harmless, but I have to say he's a major pain in the tushie, or fingers, arms, legs, tummy (for those with diabetes). Did you know, that little guy is only between 6 to 10 inches long... How can something so small cause such big problems?

So what exactly is the job of the Pancreas?

The pancreas is a gland organ that is located in the abdomen. It is part of the digestive system and produces important enzymes and hormones that help to break down food. The pancreas has an endocrine function because it releases juices directly into the bloodstream, and it has an exocrine function because it helps to release juices into the ducts.

Enzymes, or digestive juices, produced by the pancreas are secreted into the small intestine to further break down food after it has left the stomach. The gland also produces the hormone insulin and secretes it into the bloodstream in order to regulate the body's glucose or blood sugar level.

Hmmm it seems that little guy has HUGE responsibilities. Since you are here and this blog is mainly about type 1 diabetes, with references to the love of my life :D.. You may wonder exactly what is type 1 diabetes (the type Clifford has), and what the pancreas has to do with it.

What is type 1 diabetes???

(Information from Kidshealth.org)

Type 1 diabetes results when the pancreas loses the ability to make the hormone insulin. In type 1 diabetes, the person's own immune system attacks and destroys the cells in the pancreas that produce insulin. once these cells are destroyed they will never make insulin again.

Although no one understands for certain why this happens, scientists think it has something to do with genes. But genes for diabetes isn't usually enough. A person probably would then have to be exposed to something else like a virus to get type 1 diabetes.

Type 1 diabetes cannot be prevented, and there is no way to predict who will get it. There is nothing that either a parent or the child did to cause the disease. Once a person has type 1 diabetes, it does not go away and requires lifelong treatment. Kids and adults with type 1 diabetes depend on daily insulin injections or an insulin pump to control their blood glucose levels.

So basically how I like to look at it is Clifford's immune system got bored and decided just for fun to go attack his pancreas. Unfortunately because the pancreas is such a small little guy, he didn't even stand a chance against the big bad immune system and threw in the towel. So I guess in all of this if there is someone or something we want to be mad at its the immune system. I mean there are way better things to do when you're bored then to go attacking innocent organs.

So there, now you have it. That's the basic breakdown of what the pancreas is and its responsibility for what its role in type 1 diabetes is... Any questions?

Diabetes is... This pancreas is....

So to begin these last few days Diabetes has become:

Fear
Frustration
Worry
Exhaustion
Menace
Headache

I'm beginning to think I look like this image, at least it's how I feel. Only 1 break in the never ending highs from whatever has made Clifford sick. He finally got to 161 yesterday at bedtime only to skyrocket to 300+ at 11pm, which resulted in a correction shot while he was sleeping. Even though I said, "Clifford, I have to give you a shot", he never woke up. And I'm sure eventually if he reads this he will yell at me, but I have found that if I have to correct him in his sleep the top of his bum is the best place to give him a shot, more meat, less likely to wake up. He's up and moving around a little more today than he was yesterday but we still have bg readings of over 300. Honestly at this point as it's almost day #3 of high's like I feel like I'm failing as his pancreas. I know I'm doing the best I can with whatever illness is causing these highs but there is a small part of me that feels like I'm failing him.

It may be difficult for others who do not know a life with Diabetes to understand, but I really try as best I can to keep him within range, and when things such as this jump into the picture to throw a wrench into everything it's just nothing short of disappointing.

I am going to refer to myself as Clifford's pancreas for this portion of the post, because if you think about it, I'm technically taking over his pancreases job, since it's no longer functioning properly on its own. It's basically like a tenant taking up space, not paying rent or doing any sort of work.... Lazy pancreas.

So in reference to Clifford's pancreas (me) there are a few things that this pancreas is these last few days as well.

Exhausted
Frustrated
Worried
Loving
Helpful
An over analyzer
and most importantly unlike his actual pancreas
Doing the best job I can!


The point to all this is that you can see from the beginning of the post diabetes has taken it's toll on us these last few days, but I'm always optimistic that we can beat this and figure out what's going on to make the changes needed. So in it all even though Diabetes is being a royal pain in the butt, it's not winning. We are!

Illness and Diabetes

I know I've posted a few times about illnesses and how they are usually harder to handle when Diabetes is in the picture. However I wanted to tell the story from my morning with Clifford. He started with a cough yesterday and complaining of a sore throat. Yesterday not much occurred other than he ran pretty high all day long, which is unusual for him to be really high at home. No matter the corrections given, etc, etc, he still was high. But we all know that is one of the downsides of an illness and Diabetes. So now the story from today. It was 5:40, Clifford wakes yelling for me, not saying Mom, no yelling Mommy! Now tell me what that thought puts in your head when your D kid is yelling for you. I stumbled as best I could running up the stairs after being awake all night. He's in the bathroom and yelling because he can't get up, he feels too shaky. First thought, "Are you dizzy, do you feel low?". Nope, just shaky and tired. I felt his head, my next reaction to that, and he was burning up. Come to find out he was running a temp of 102. Gave him some Ibuprofen, checked his bg# just to be on the safe side you know, and he was still high at 303. So I put him back off to bed with a drink of water. Come 8:45 he is still sleeping, unusual for him but heck the boy is obviously sick. At 9:00 I decided to go make sure he's still "sleeping", then decided to test his bg#, well he wakes up in the middle of me testing, not really making any sense at all. He kept pointing to my face saying he was fine and he was right here (while pointing to my face). First thought was he was low and out of it. Nope BG#313, then #353, tested twice to make sure. Had to go through the whole rounds of asking him his name, age, and where he was at, to which he responded "Outside". Honestly all this lasted maybe 2 minutes but I can tell you for those brief two minutes of him not understanding where he was or what was going on how scared I was. He eventually came too, and said I was being silly. I think I woke him up when I was testing him and he was just out of it from that.

But the point to this is that an illness with Diabetes sucks. There is no other way of putting it. The flu can land kids and PWD in the hospital because without food in their tummy's and getting sick they can have big dips in blood sugar that could be fatal. A common cold is a pain in the rear end because it sends blood sugar skyrocketing. And whatever Clifford has right now is a pain as well. With these higher blood sugars he runs the chance at developing ketones, which well we all know how fun those can be. Thankfully after checking with our Blood Ketone meter (love that little thing) we are at 0.0!

Awareness, Advocacy-Our way!

Drama is everywhere and unfortunately even in the DOC. I mean seriously it's a bit ridiculous if you think about it because we are all fighting the same battle, in different ways but we are all FIGHTING diabetes.

If you choose to raise awareness by walking in a JDRF walk, then I'm proud of you. You are raising awareness your way. If you choose to raise awareness by telling everyone you meet about diabetes, then I'm proud of you too. If you choose to wear your blue heels, and let others know exactly what they stand for, then I'm proud of you. Do you see a pattern here? I'm proud of you however you choose to raise awareness and advocate. It doesn't matter how you do it, the important thing is you are doing it!

We all are fighting this fight whether we are a PWD, or a parent to a CWD, or a spouse of a PWD, we all are doing the same thing. I don't see the reason to jump on someone because they are not raising awareness and advocating the way you like.

So to Alexis, Diane, and Tony, know that I am proud of you all for the work in raising awareness and advocacy you all are doing!

I cannot forget to give a shout out to Noah (aka The diabetes Dude), and his family! I'm proud of you all too!

To all the other members in the DOC, I'm here to let you know that no matter what you do that "I'm proud of you for doing it".

Bottom line


I'm proud of you all!

Diabetes: Staking MY claim.

About a week ago I was asked to do a guest spot on this blog. The topic I was given was about being a Step-parent to a child with diabetes. About two years ago when Bridget and I were about a month and a half into our newly rekindled romance Clifford was diagnosed with T1 diabetes. This came as a giant shock to both of us and I spent the weekend sitting in different waiting rooms ( I was chased from waiting area to waiting area by a very disgruntled ex-husband) waiting for updates on Clifford's condition and how our lives and relationship were going to change. My life was in turmoil from my own life going to crap and I did not want to abandon Bridget in her time of need and this disease was not going to scare me off. I'm a combat veteran I've survived scarier!

The hardest part for me in dealing with all of this is that I'm not Clifford's biological father. I have no legal rights to the boy. I am not allowed (by law) to make any of the decisions that concern his diabetic care, even though I know more about T1, I have been to more clinics, and I have taken more classes than his biological father. Although Bridget does allow my input which means a lot to me. It would get very aggravating for me to see him go off to his biological father's place and come back with stories of eating whatever he wanted(this is pre-carb counting)and numbers that were all over the place or high as a kite. It also currently drives me nuts to go to all these classes and do all the leg work only to have this guy come in second guess the directions that we send along and call the hospital to get someone to give him a different easier answer.

In the end I have willingly chosen to have diabetes in my life and I do it happily and lovingly. I love my T1 kid and his incredibly strong mother. Yeah I know he's not MINE, but he IS mine and I layed claim. It's a territorial man thing.

Pump Process

I knew starting out it would be a bit of a journey to getting started in the pump process, however it seems that it's even more tricky of one than I expected. We took the necessary courses, carbohydrate counting in August, and Pre-Pump Classes in Dec. Now mind you back in December the educator made it sound like the process would be a breeze and I quote her.

"You will submit for your pump, they'll ship the pump to your house, you'll get educated on site, changes, pump functions, and get started on saline, a week later you will come back in and go live on insulin".

Hmm sounds pretty good. However here we are 1 month and 2 weeks later, and we are still no further along really then where we were in December. We decided to go with the Medtronic Minimed and was told the process to getting approved through our insurance usually takes up to 30 days. Well look now it's well over 30 days and where are we?

The information for the pump was finally submitted, and is in the works of being processed, reviewed and pending approval through the insurance company, which now we're basically waiting another 30 days... Oh and where do we stand with the CGM you might ask??? A certain insurance claim handling lady from Children's is attempting to make the decision that it is a waste of time trying to get the CGM approved through Clifford's Insurance.... She is basically refusing to do her job and submit the needed paperwork, which by the way is only 2 documents, probably a total of 5 to 10 minutes of her precious (has a working pancreas) time. I like to throw that last little bit in there because she still has a working pancreas, and all I'm asking is for a chance to make my son's (non working pancreas) life a little easier. So 5 to 10 minutes out of her time to do her job is not asking that much. So in speaking with Clifford's case manager through the insurance company it seems they actually get this wait for it, approved a cgm ... Wait what back the train up because said insurance claims lady stated they NEVER approve them. Whoops looks like she was wrong. So now the case manager is going straight to the doctor to get the necessary paperwork that needs signed so we can start the process for the approval of the cgm. I don't see us getting it anytime soon, but I do see us getting it eventually. I also see said insurance claims lady getting a talking to one way or another for not doing her job.


On a positive note I've included the picture at the top of what Clifford's new $7K pancreas will look like, isn't it pretty!

Guest Blogger

After reading David Edelman's awesome blog post about "Marrying into Diabetes: A Husband's Perspective", a good question arose about if there was an article out there about Marrying a Parent with a Type 1 Child. That got me thinking that I could somehow talk Chad into becoming my first "guest blogger", to offer some insight on what it is like to Marry into Diabetes from a Step Parent's perspective. And I'm very happy to announce that he has taken me up on my offer, I like to think I was very convincing when I asked him. Chad will be able to put more of a better spin on it from his point of view, but all I will offer right now is that we were together merely 1 month and 12 days when Clifford was dx'd.

So I'm hoping to be able to post his guest blogging spot up here soon. And feel free to ask questions when he does make his first appearance! So check back soon!

The Diabetes Fairy

It seems that the diabetes fairy has graced us with her presence overnight as of late. I posted yesterday about Clifford's overnight numbers which let's recap (97 at bedtime, 127 at 11pm, 131 at 1am, 115 at 3am, and 93 at wake up....I celebrated that as a small victory. I didn't however expect to be celebrating another small victory today. His numbers stayed as steady as one could ask. He was 95 at bedtime, 128 at 11pm, 127 at 3am, and *drum roll please* 129 at wake up. I don't think you could ask for anything more steady and constant. I'm super excited by these numbers. Now that is not to say we will continue on that path the rest of the day, but for overnight that is another small victory to add to our calendars! So as I stated, it seems that the diabetes fairy has graced us with her presence. I thought about what I'd imagine a diabetes fairy would look like, and I'm assuming it's something like the picture of the thing I created above... Besides a diabetes fairy should have all the D supplies one would need, right? Whatever it is, I would like the diabetes fairy to stick around at our house a little while longer, say..... Indefinitely! I don't think that is really too much to ask. Oh yes, and notice from the picture above, (a rainbow) now I just need to figure out someway to add in unicorns and glitter and we'll be on track.

Artificial Sweetener

I asked the question about artificial sweetener to the DOC yesterday via Facebook and received quite a response. So it got me thinking more about it and wanting additional opinions from others. You see we're not quite two years into this Diabetes adventure. In the beginning we tried Sugar Free everything. Clifford loved to drink Crystal Light, Sugar Free Koolaid, etc, etc. However after doing some research and recognizing how much aspartame affected his tummy, I decided aspartame was not for him. The only exception to this rule was the occasional diet soda. I really despise Crystal Light, and really only for this reason. The one memory of Crystal Light that sticks in my head is from when I had to use glucagon on Clifford. He came down for a drink and was permitted to pour himself a cup of crystal light. I remember having to clean up the after effects of such act as he spilled the Cherry crystal light everywhere. While I was cleaning up this mess, Abby came running down and said Clifford fell in his room and wasn't moving. I ran upstairs to find him face down beside his bed, unconscious. After trying to get him to speak to me and getting no luck, I had to administer his glucagon shot. And I will tell you this, no matter how much training with the glucagon you have, it doesn't make it easy or helpful when your hands are shaking trying to prepare that HUGE needle to push into your unconscious child's body. He recovered from that hypoglycemic event and really doesn't remember much of it other than his short stay at Children's hospital. However I distinctly remember all the details. Crystal Light probably tastes great, and is good for a lot of people, however it gives Clifford tummy issues, mainly because of the aspartame, and well my memory doesn't help either..

So I will stop my rambling and get to the question. What type of artificial sweetener's if any do you use for yourself or your kids? For us the choice is beverages made with sucralose, and if he needs to sweeten up anything like cereal or tea, we go with sucralose, and stevia. I also give him the "real" stuff (shame on me) but he does get to drink orange juice for breakfast from time to time with the kids, and indulge in actual juice pouches, or V8 juices as well. I just make sure to include the carbs into the carb total and dose him with insulin accordingly.

And just because I'm really excited about it I want to share our overnight numbers. Clifford came home high from school 272, so after a correction and coverage of the carbs he was 97 at bedtime, he was then 127 at 11pm, 131 at 1am, 115 at 3am, and 93 at wake up this morning!! Talk about a good start to the day and GREAT steady numbers throughout the night. Small victories are great and I like to celebrate them even if it is for a short period of time.

Diabetes makes you crazy....

There I've said it! FACT: Diabetes makes you crazy, well at least drives you crazy! For almost a week and a half every time Clifford ate he complained of stomach aches... What was the first thing to pop into my head, yet another chronic condition was trying to rear it's ugly head.... CELIAC'S.. He was tested well over 6 months ago and we got the news back that he was "Negative". That was surely a sigh of relief at the time. But like we all know in dealing with "negatives" a negative now doesn't mean it will still be a negative down the road. In fact because he is a Type 1 diabetic oh and throw in the added benefit of developing Hashimotos Thyroiditis (another autoimmune disorder affecting his thyroid), which now he is technically considered to have Hashimotos thyroiditis which has developed into Hypothyroidism he is at more risk for developing Celiac's.

In case you are not familiar with the conditions I'm referencing here is the low down on the two.

Celiac's disease

Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms.When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.

Hashimoto's Thyroiditis

Hashimoto's thyroiditis is the most common cause of hypothyroidism in the United States. It is named after the first doctor who described this condition, Dr. Hakaru Hashimoto, in 1912.

What causes Hashimoto's thyroiditis?

Hashimoto's thyroiditis is a condition caused by inflammation of the thyroid gland.

It is an autoimmune disease, which means that the body inappropriately attacks the thyroid gland--as if it was foreign tissue. The underlying cause of the autoimmune process still is unknown. Hashimoto's thyroiditis tends to occur in families, and is associated with a clustering of other autoimmune conditions such as Type 1 diabetes, and celiac disease. Hashimoto's thyroiditis is 5-10 times more common in women than in men and most often starts in adulthood.

So now that we've got all the technical stuff out of the way, back to the main point... Diabetes drives you crazy.

Not only have I've been trying like crazy to get him retested for Celiac's but add into the mix Annie who has been waking like a mad woman the last two nights. The kicker is last night she literally pee'd through 2 diapers. The second diaper took only a matter of 2-3 hours to soak. So yes, I will admit I tested her this morning while she slept like a baby, seeing as we have the Delica, and it's virtually painless on the lowest setting of "1" she never woke up. Happy to report she was a nice 93 fasting blood glucose number. A brief sigh of relief there.

But let's not forget last week how diabetes drove "us" crazy... The first incident was with Abby passing out at the skating rink after a fall, which btw I thought was a seizure during those few seconds she was unresponsive, which felt like hours to me. I say "us" crazy because Chad's first thought was "She's diabetic".... Now move forward to the next day when Hayleigh had been acting way more thirsty than normal, so yes I tested her and she was 143... However that was NOT a fasting number. So before I let Diabetes drive me even more crazy, I tested her in the morning before breakfast and she was 94!

I tell myself that at least we're more prepared and able to recognize the symptoms of diabetes early enough. However you are never prepared for the diagnosis of Diabetes, this is why it tends to drive you crazy so much. Add in there lows, not just "lows" but the meter actually telling me "LO" twice, and reading a "25" another time. I kept my calm, had him wash his hands and re-test and it read over 50 each time, but really 58 is still NOT a nice number. But I guess if I had to choose we'd take that over a "25" or "LO" any day.