.........1140 or more to go.
So we have been dealing with Diabetes for exactly 1 month now. I totally feel like we are on a roller coaster. I am starting to wonder when we are going to get off.
Today to ring in the anniversary we have been dealing with EXTREME highs and lows. And when I say extreme she has been as high as 500 and as low as 50. I don't have any reasons to explain it. I am frustrated. I want to say that we have it all figured out, but as soon as we think we are getting it we get a day like today.
When we were in the hospital I remember one nurse telling us that the more organized our life is the easier it will be to control her diabetes. I have taken this to heart. We have taken one room at a time and scrubbed, de-junked, and organized it. I officially only have my bedroom left to do. I am really excited that we have done this. It really does make life easier. Set meal times are a must at our house too. I still have so much more that I want to do though. If anyone has any great ideas for ways to organize PLEASE SHARE!
Looking back on this month I feel that my little Princess has grown up so much. I still am amazed at her strength and how well she is dealing with all this. I feel so bad for her when she has her lows and she looks pale, has a tummy ache and is tired. My patience is tested when she is really high and I can't get her understand instructions, when she is irritable, and the times before bed and can't sleep because of the high. I understand that it isn't her fault, that is just how she reacts. I wish I could just kiss it and it will all be better. That her broken pancreas will start to work again and never fail her so she doesn't have to get any more pokes. Even though I feel all this emotion, I can look at her and she is still smiling. She is being effected, don't get me wrong. She tells me all the time she doesn't want to have diabetes forever. How is it that I have a 4 year old, that since birth has been afraid of the sight of her own blood and has been known to scream at any scratch big or small, be so brave when having to have 25 or so pokes a day? She still has never had a major breakdown about it all. This strength is heaven sent. I mean that! Her breakdown may come one day, and when it does come, I will be there to hug her, to love her, to let her cry or scream. She deserves it!
So to the last month of our lives....thank you. Thank you for the knowledge, the strength, the love, support, the family and friends, the challenges, the highs, the lows, the connections, the tears, the inspiration, all of it. If this has to be our new life than I accept it.
7 comments:
She is quite an awesome girl. Hang in there guys.
I'm tearing up. Your family has had an amazing attitude throughout all of this.
While I'm sure the breakdowns will come (they did for me) you are right, she is a very brave little girl. I remember thinking a couple years after I was diagnosed that I was ready to "stop" the whole diabetes thing. I hated the strict routines and the ups and downs. At first it was like a game, let's see how perfect we can keep the blood sugars. After a while, though, I was sick of playing.
Here's my advice, for what it's worth. Organization is a good start but I think routines are key. Since you aren't used to the curve balls diabetes can throw at you, make sure that you practice carb-counting and measure/weigh what she eats at every meal until you have the portions and carbs down cold. Also realize that food and exercise do different things to everyone's blood sugar and it will take trial and error to figure out what works best for her. Last, since she's probably still honeymooning it may make it tough to gauge insulin doses. One day a certain dose for a certain food may be just right, the next day it may be way too much or too little.
Again, if you ever have any questions, want suggestions/advice or want to talk/vent, feel free to contact me! For now, you are doing great so keep up the good work!
~Layne
I need to stop reading your blog... You keep making me cry!! You have a great attitude about the whole thing. Hang in there!
Hi ShannonThank you so much for stopping over at .www.whydidtheinsulindie.com. I know what it's like to have a newly diagnosed child just before Xmas. You and your family seem to be tight and fighting, and your little princess seems like she is in the best possible hands.I am so sorry if my last post terrified you. You must remember that Lance was diagnosed over 6 years ago. Every year that passes, more information is discovered about how to keep yourself as healthy as possible, while living with type 1 diabetes. As Lance was diagnosed as a baby, he had no possible way of communicating to me how he was feeling. My only advice to you is "test, test,test." Keep an eye on your daughter's blood sugars constantly. Just because she may look fine, can often mean the opposite. She may also look tired and washed out, and her blood sugar will be fine!!! Im not the same person I was 8 years ago. I am slightly cynical, slightly negative, I have seen so many false starts in the hope of a 'cure." However, if there was ever a time for your daughter to get diagnosed, (as awful as this sounds...) it's now. There is magicv happening everywhere in the world. Even in Australia, there is a nasal vaccine available to siblings of type 1 diabetic children. It's in its second stage of trial, and it appears as if its going to get the thumbes up.
Happy holidays to you and your family, Shannon. Push IDDM to the backburner on Xmas Day, and allow your little girl to enjoy herself. She's going to grow up to be a remarkable human being. The Online Diabetes Community parents are all the hugest fans of their children...the courage and bravery that they have, even through the most insidious of times, is just spinetingling.
I'll add your blog to my blogroll, and thank you for leaving me a message!!! My best advice to you is, let your glucometer be your best friend through all of this. The numbers don't lie.
Take Care, and welcome, even though I wish it was under circumstances...
Kate
I have been doing this 3+ years and I still haven't figured it out. I know more than I did then, but diabetes still throws me curve balls, I aim and miss horribly.
My best advice is to make sure you log all of her sugars and look for patterns. I also log everything that Riley eats. That way I am able to see if certain foods are affecting him differently.
Consistency is key.
It sounds like you are doing a great job-keep up the good work!
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