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.

Round up of 2011.....

With a new year upon us many people reflect on their past year, what they have accomplished and what they want to have happen in the next year. For us we have started the process of getting Clifford on the pump. The paperwork has been filled out and sent in, and now we are just waiting approval from the insurance. So our biggest accomplishment dealing with diabetes of 2011 was moving towards the pump. Well I take that back, moving towards the pump was our 2nd biggest accomplishment of 2011 in dealing with diabetes. The first biggest diabetes accomplishment was that Clifford is still alive and healthy.


One of the biggest diabetes accomplishments in the DOC this year is The Blue Heel Society... Have you heard of them yet???? If not you really need to check them out. You can find them on Facebook at, The Blue Heel Society For more information about what the Blue Heel Society is all about please read ahead.

The Blue Heel symbolizes the pain & discomfort that cant be seen from the outside, for those living with Diabetes. Just like a fab heel.


This organization is dedicated to all people living with, caring for, or interested in diabetes. The Blue Heel Society was formed on November 13th, the eve of World Diabetes Day, 2011 by a dedicated trio of spirited advocates who committed themselves to promoting awareness, pursuing the continued fight for a cure, highlighting obstacles people diagnosed with diabetes are faced with, and promoting advocacy for the diabetes community as a whole.

The Blue Heel Society accomplishes this NOT by raising funds, but by fueling our crusade with the strength, dedication, and passion of our partners.

Our Mission:

Advocacy - Awareness - Encouragement - Support

The mission of The Blue Heel Society is to deliver a clear, united voice via organized assembly within our own affiliation, and also at local and national gatherings, events, conventions, and other venues, helping to dispel myths, offer education and to champion the needs of people affected by diabetes.

We choose to stand up, be seen, and be heard in our Blue Heels.

302-GOT-SHOE

@Copyright Tony Cervati 2011
Website
http://www.blueheelsociety.org

My other favorite part of 2011 in the DOC was Denise's Type 1 D Mom's song, which is a Parody of Katy Perry's California Girls, you can take a listen to it at My Sweet Bean and Her Pod


So now that I've discussed what parts of diabetes I felt were the biggest accomplishments and favorites of 2011 it's time to look forward to 2012 and discuss what I want to see. First and foremost the one thing I would like to see happen with each new year is for a cure.... I am looking forward to getting Clifford on the pump even though I know it will be like diagnosis all over again in learning a bunch of new things, but I'm fairly certain at least on our end we will catch on quickly. 2012 has a lot of great things in store especially in the beginning of the year. I cannot wait to see what the rest of the year will bring.