Sunday, August 2, 2009

Vacation, and my mind is running wild

Tonight I'm beside Hannah in bed. The hotel room is quiet, and I cant sleep. Just outside our room I can hear the ocean waves. Its such a peaceful and relaxing sound, yet inside my over active mind there are so many feelings at war. My Hannah now has a fever, she's sun burned and feeling yucky. I'm sure she's dehydrated, yet she's drinking water and peeing constantly it seems. After the morning battling Maddison's ketones, this isn't where I expected to be, at least not with Hannah. Everyone knows why I cant sleep.... The Diabetes demons are taking over, even when I'm supposed to be on vacation.

This morning I watched helplessly as Diabetes tried to ruin our day. A "simple" mistake is all I made. The result as noted in my previous post, was the wrath of KETONES for Maddison. There isn't any room for mistakes with Diabetes, yet we make them ever too often. Us parents aren't made to be a perfect pancreas!! Our kids pay the price when we make mistakes with Diabetes,therefore, I dont think I ever forgive myself entirely when I do make those mistakes. I keep wondering when I will.

Something else has been lingering in my mind.....On Thursday we attended a corporate breakfast engagement for JDRF. We were asked go and represent as a JDRF family. I was warned, I must say, that they would play a video of a woman speaking about her complications from Diabetes. I assured the JDRF girls that we would be fine in sitting through the video with Maddison and Hannah, after all, my girls know all to well about Grandpa's complications. What I didnt expect however, was this person to talk about her complications that set in at the age of 11, just 5 years after her diagnosis. She was diagnosed at age 6, just like Maddison.

Severe Neuropathy in her hands and feet. AT AGE 11. Gastroparesis and Retinopathy by age 18. Thats just 12 years after being diagnosed. How? Why? Did she run THAT high for years? Was she consistently in the 300's? 400's? Maybe she just fluctuated from one extreme to another? Isnt that what they now think causes most of the damage to our bodies? What if genetically her body just couldn't with stand the high blood sugars like some others seem to? GENETICALLY predisposed to complications? What if?

What if my Dads complications aren't really from his Diabetes being "out of control"?????? What if I'm genetically pre-disposed to complications? What if my 6.0 A1c means NOTHING because it is still above normal? Where will I be in 10 years? In the same place as my Dad? What about my Maddison who was diagnosed at such a young age? I've sat around and convinced myself that today we are so much better off than Diabetes years ago, and, I know we are.....but hearing these stories makes me want to cry. Most people do their best each and every day to manage their disease, yet there aren't any promises.

The night after watching this girls video I had a nightmare. For the first time EVER, I was worried about myself. Most days I dont even know my Diabetes is there. I get lost in caring for Maddison's Diabetes. I dont have enough in me to worry about two of us. I've always felt confident that because my A1c's have always been under 6.3, that I could never possibly have complications. Now I wonder. What if? Out of nowhere this dream hit me. I was in the same Dialysis clinic I used to take my Dad to, only this time I was the patient, and I was completely alone. I remember feeling alone in my dream, and then I woke up.

I keep thinking about that dream. I can't get that girls video at the JDRF breakfast off my mind. All I could FEEL today seeing Maddison's PURPLE ketone strip, was that I'm failing. So now my mind runs wild. Its nearing midnight. I cant sleep and I'm waiting for the next blood sugar check so I can go to sleep. The hotel room is quiet. I can hear the ocean waves outside the window, yet I dont feel so peaceful. Some days I do, but tonight, even on vacation, I dont. Oh how my mind needs to quit running wild!!


mom2wendy said...

Oeanside is beautiful. A wonderful place to vacation. Wendy spent her pre-school days living in Caspistrano. I wish I could tell you "please do not worry, there have been many advancements in the field of T1D," which there have been. But, I understand the diabetic mind monster! Try to listen to the waves and just drift...even if you can't sleep.

Anonymous said...

No, you cannot afford to go there! Yes, such complications are possible at a young age, but they are so very rare. I would assume the young girl was strongly genetically predisposed to complications. And it is not possible for some people to ever get a handle on blood sugar control. I am strongly convinced that some people do all the right things, yet have wildly swinging blood sugar levels, what used to be termed "brittle." This certainly does not sound like your case or Maddisons. If your child fell into this category, you could now get cgms to help gain control. This does not have to happen to our children. We have great A1c's, in the low sixes to mid sixes usually, yet in the four years since my niece was diagnosed, our meter will still have a range of 60 to 230 as an average. Even with cgms, we still have the range, just less time spent there our meter average reads 20 points lower than before (we have not had a new A1c since starting cgms). You cannot prevent spikes, just correct and limit the time spent while high. And we did that with frequent fingersticks, as well. It is not possible to not make mistakes. The other day her set did not click in after her bath when she reconnected. And on and on and on. Do not obsess about each number, look at the overall picture. You are doing a fine job. And, control will get a lot easier for your daugher in a few short years, when the artificial pancreas WILL become reality. I really wish you had not watched that video. I am so sorry for the young girl who has to endure so many complications at such a young age. Thankfully, this is far from the norm.

Molly Johnson said...

Good Luck with the monster. You are not alone.