Monday, August 30, 2010

The Separation...

Today's post is not necessarily on diabetes but on marriage. I have been married for almost 10 years and have just recently separated from my husband. There are so many life changes taking place that it is overwhelming, scary, sad and exciting. I am going to go back to work. I might be single again. My kids are going to be shuffled from house to house for awhile if not forever. So many things to consider and so many things to take in. I have never been very good with change. I am a creature of habit and like for things to be comfortable.

My husband and I are best friends. We have grown up together so this is not a nasty split. There is still love and respect for each other. I'm just trying to figure out if there is any sort of romantic relationship left to salvage. I can't tell if I am numb from years of no affection or if I am totally not in love anymore.

When Lily was diagnosed with diabetes, we quit sleeping in the same room and that has been a huge thing for us. It became normal to us to sleep this way so that we could check her at night. I didn't realize how lonely I had become. I didn't realize how unhappy we both were as a couple. I didn't realize it until the beginning of this year.

So, I am hopeful that life has nothing but good things to offer both of us. I am also hoping that some sort of clarity will be provided to me as well.

Friday, August 20, 2010

Drowning Dex Part Deux...

Our beloved Dex spent the last day and a half hanging out in a jar of rice. Why? Rice sucks the moisture out of things. This is why you see rice in salt containers at restaurants. When I called Dexcom the other day after our drowning incident, they suggested that we stick it in some rice for a few hours and see if it dries out. After the spin in the washing machine, Dex was not turning all. Well, yesterday morning, Dex turned on after a leisurely night in the rice! There was a pretty significant cloud in the background but it was on so I was hopeful.

I called Dexcom again and they agreed that things were looking up. They told me to leave it in the rice a bit longer so that the circuit board gets completely dried out (hence, the cloud) and that way it won't short out on us. So, Dex spent another night in the rice. This morning, Dex turned on with NO cloud! I now have it back in the rice just to make sure and am charging it again while it is in there. Fingers crossed multiple times!

The new sensors came in yesterday so we are going to hook Lily up again this afternoon after school and hopefully, Dex is fully recovered and do it's magic for us! This was a close call.

Wednesday, August 18, 2010

The Stupid, Idiotic, NON-waterproof Dexcom...

Seriously? How many times is it going to take for me to realize that the Dexcom is NOT waterproof? As I was sitting here at my laptop daydreaming away on daughter's Dexcom was getting a nice, little bubble bath in my washing machine. The buzzer went off, I went in to switch the clothes to the dryer and boom...Dex hit the floor (insert many expletives here that should have not been murmured in front of the children).

You see, just a mere couple of months ago, Dexcom took a swim during a swim team practice. Lily walked up and tried to hand it to me and I said, "Wait until it's time to get in so that I can see your number." Well, she waited but I never asked for the number and she jumped in. A moment later, she walked up carrying a very soaked, very ruined Dexcom. I called the company and they were "kind" enough to give me a replacement for only $400.00. Gee, thanks. So, I figured that was the last time Dex would get wet!

Well, we went swimming again yesterday and Lily had the Dex in her pocket. I threw her clothes in our swim bag. When we got home, the Dexcom sensor fell off and I was out of them. So, we had no choice but to take a break from the Dex. This brings us to an hour ago. I grabbed the swim bag and everything inside to wash. It never occurred to me that Dex was in there too, awaiting its fate.

I called Dexcom customer service and they were not so nice this time around. Apparently, you get one shot to drench the Dexcom. Water damage is not covered. This time, they want $649.00 to replace it. Oh. My. God. Next post may be about divorce. Stay tuned...

Friday, August 13, 2010

Happy Hour

I had happy hour last night with other D moms. It is so nice to get together with other moms who go through the same daily struggles as we do each day. I have become so close to some of these moms and it has really been a life saver for me emotionally. It's nice to meet with people who understand my lingo. It's nice that they "get it" when I talk about how hard it is to deal with Lily's mood swings, or to get up at night and check, or to be too afraid to not get up at night and check.

My non D friends are great too but I really don't think they get the impact that diabetes has on your life, your marriage, your outlooks,  and so on. It's hard to live with this disease daily. It's hard to think of life pre-D. I don't remember much of what it was like to just give Lily food or go to a birthday party without taking in extra factors to determine how to best manage her and still let her just be a regular kid. I cannot even begin to imagine what life would be like if I could just drop her off somewhere and not be concerned that she'll be unconscious when I return to get her!

On the flip side, I can't imagine my life without who she is and this is just a part of why dwell on the bad? I choose not to. Instead, I choose to find other moms to vent to that DO understand and I choose to find friends for my Lily that are going through what she is going through so that she isn't alone in her battle. She is an amazing kid, diabetes and all. I want to teach her that this will not slow her down but she may have to take a few extra steps to get the places she wants to go...and it will make getting there all the more worthwhile! Happy Friday!

Thursday, August 12, 2010

Hope For A Cure...

I was recently at breakfast with a bunch of D moms catching up and swapping stories about our kiddos. The conversation turned to our medical care here in Houston. A little background...there is one rather large hospital here, Texas Children's, and they are THE place that everyone goes for just about anything. So naturally, when most of our kids were diagnosed, we turned to them. Well, Texas Children's is a fabulous place for just about everything, except diabetes. Here's why:

1. They don't like to prescribe CGM's because they don't have the staff to train on CGM's
2. As previously stated, they are severely understaffed since they take every patient that walks in the door, insurance or not.
3. They have a protocol they follow and will not go above it for anything. Therefore, if you are ready to move to next steps in care (like learning more about nutrition, etc.) they will discourage you.
4. They think every patient and patient's family is on the same education level, Kindergarten. Yet another reason they won't prescribe CGM's. They think no one will check their children anymore
5. My favorite reason: the head of the department has told several people that THERE WILL NEVER BE A CURE.

So, we left Texas Children's a few months ago and chose to go with the University of Texas Physicians instead. They are a smaller practice and much more individualized in their care. They are even opening a new Diabetes Center very soon that will cater to the type 1 community. And, their doctors are involved with the JDRF and trying to find a cure for diabetes.

One of the mothers at breakfast was in tears after the head of the department at Texas Children's told her, "Unless your son is a rat in a cage, he will never see a cure for diabetes." How does someone like this end up working for children. How does someone like this end up being the head of a department for said children? How does someone who is so old school that he doesn't believe in new technology for our kids, end up heading up the endocrinology department of one of the largest and best children's hospitals in the world? It baffles me. It angers me. It saddens me. Sometimes a little hope is just what the doctor ordered for our families.