Tuesday, June 24, 2008

Carefree weekend

Saturday after Hannah's early morning Volleyball game I decided we HAD to get out of the house, we had to get out of town. We have alot of upcoming stresses with Josh changing employers, which of course means insurance issues. We will have a lack of insurance coverage for 60 days, and with two with Diabetes in our house that is down right frightening. (I guess I should consider COBRA) So we dedided to take a much needed run from life and head up north to the mountains and enjoy our family before stress sets in.

We just got in the van without a certain plan. We have always wanted to visit the Montezuma Castle in Camp Verde. This was stop #1. Maddison just wanted to fish around in a lake or a stream catching tadpoles, crawfish and minnows all day. So that is just what we set out to do. The kids were so excited and happily chatting the entire way. Summer this year has been such a bore for them, they really needed and deserved this trip. Josh and I were able to discuss alot of things we have been avoiding to resolve. Even the drive itself for the conversation it allowed was enough to rekindle good family feelings. We enjoyed a completely carefree day down by a quiet creek in Strawberry, AZ. Maddison was in heaven. Hannah discovered that she loves to swing from the trees and splash down into the creek. We couldn't get her off that thing to leave!

Our family was revived, refreshed and relaxed. We didn't worry about Diabetes. I didn't stress about the lows (34!!) Maddison had the day before while swimming. I didn't worry about her ever changing basal rates at night that have me exhausted and irritated this week. We didn't stress about the upcoming financial burden of no insurance. We didn't worry about tomorrow. We just enjoyed the moment for the day. Here's to our carefree weekend, and feeling ready to conquer for today!

Sunday, June 15, 2008

Just doing

We are four weeks into summer vacation and I can't believe how time has flown by. The last few weeks I have just been doing. "Nothing," that is.... in terms of Maddison's blood sugar. I'm not changing much, though I am watching everything change. She's been running much higher than normal (160-280's) and I'm not too keen on doing anything about it. If I change anything lately it back fires. So, I am not logging. I am not adjusting and I am not looking for patterns. I don't need to. It is obvious there isn't any pattern or tracking to be done. This is Summer. Every day is entirely different. So I have surprisingly just been doing "nothing" extra. Just letting it be. Correct the high or low and move on. I'm taking a break from the micro managing and waiting this one out until I see something that makes sense. I'm not going to drive myself crazy trying to find the answer. Right now there isn't one, unless it is simply called Summer. No schedule, no routine, no set bedtime. Every day is carefree. Exactly how a summer break is intended to be. I can't believe I, the perfectionist, has given in and agreed to just let things be. It feels really good. Of course I feel a bit guilty (as always) but this is just how things will be for now.

Me? I am low. Low, Low and Low again. Why? I have no idea. It certainly isn't my workout. Nope. Too tired lately to get out of bed in time. I'm a bit perplexed and actually very worried about my lows because I am not feeling them until the 40's, and even then it is just a slight feeling of head fogginess. That's pretty scary to expect a 60 or so and to see a 42 with no real strong hypo symptoms. Damn. I better figure something out before the 30's and 20's creep up on me. Of course, I have gained about 5lbs the last few weeks because I have to keep force feeding sugar into my body to treat the nasty lows. I hate that.

"Just doing" is a good choice for us right now. I have some sanity and Maddison's poor little fingers get a chance to recover from the crazed basal testings. We are high spirited lately. We are keeping very busy. Anxious for a new baby cousin waiting to be born. Planning a trip to the beach.........you gotta love summer.

Thursday, June 12, 2008

Proud as can be




Wednesday at work Josh called me to say Maddison recieved a package. Inside the package was notification that she had won 3rd place nationally in the "Inspired by Diabetes"
global competition!!! She has an "elegant" trophy now to show for it. Her first trophy that is. She is sure to mention that to everyone. She also had $500 donated in her name to the global efforts around the world in which the program sponsors. She is so proud, and she should be. She has amazed me with her great attitude towards this Diabetes demon each and every day.

Maddison chose to write a short poem for her entry which had to include a reason that she is "Inspired by Diabetes"........

Why I am Inspired

I am inspired by Diabetes because I know I can make a difference to all children in this world. Technology has given me an insulin pump, so I know one day we are getting closer to a cure.

Yes, that really came out in her own words. I guess she really does listen when I speak. Here is her winning poem entry......

If Only

If only I could be Diabetes Free
my dreams would come true
If only I could eat when I want to
I would be just like you
To donate money my dreams could come true
If only I had a map to show me to a Diabetes free world.

-Maddison Lyons, age 7

I have cried every time I think about her entry. Of course, with a smile on my face. "Proud" is just the beginning of how her winning entry has made me feel. Maddison has come a long way from being the meltdown child that she once was when Diabetes was invading her body and spirit early on, for years. She is healthy again, she is who I knew she really was. I feel like I have my little girl back. She starts each morning with a smile and eagerness for what the day will bring. SHE is inspiring, I know that she will continue to amaze me with the grace in which she handles the ups and downs of being a child with a chronic illness. She doesn't let it interfere with being a kid, and that is what matters most.

Wednesday, June 11, 2008

My diagnosis of CRS and Summer plans!

CRS is my inside joke with a co-worker that abbreviates my newest extreme ailment. Can't Remember Shit. Thats me! My memory has gotten so bad that I am going to see my family doctor. Of course I have been having other issues such as a relapse of depression, headaches, fatigue and totally being unmotivated to do anything but eat. I have always been estrogen dominant. Maybe thats it. Maybe it is a weird female thing. Maybe I need an increase dose of my Celexa. Maybe the fact that I haven't hit the treadmill in 3 weeks is causing my CRS. I don't know. But, I do know that it is really almost embarrassing at this point. I have made some really stupid errors like giving myself insulin and forgetting to eat. Double dosing myself. Losing EVERYTHING, forgetting phone numbers, like my own! Forgetting where I am going when I get in the car. Forgetting where my car is. Everything is forgotten. Everything. I have made numerous work errors and I can't concentrate or stay awake at my desk. Or anywhere for that matter. Blood sugar 30 day average is 131 so that shouldn't be it. I am sure I am not low at these times either. I think my Thyroid has finally given up. Man, that would really suck.

Summer Plans!!

I decided after many anxious weeks that Hannah and Maddison will be staying home by themselves (Well, Dad is sleeping in the next room) on the 2 days that I work. They were just too bored to death at Grandma's house. I plan to work 6 hour days instead of 8 hours so I can get breakfast done without the added worry. That leaves just 4 hours for them to fend for themselves. Hannah suggested it. I refused the first 2 weeks, and now I realize they NEED the Independence and responsibility. I was so worried about Hannah having to manage Maddison's carbs, lows, highs and pump. But, with breakfast done by me, they should be fine until Josh wakes up. I can't believe I FINALLY am ok with this! I HATE to give "D" responsibility to anyone, especially a 7 and 11 year old. But Hannah does great. Maddison knows how she feels and Dad is there anyway.

So, I organized the movies so they can actually find one to watch. I brought out an art box for Maddison since she LOVES to make books. I bought her some math workbooks and educational computer games. Of course the girl LOVES to read books and we have a complete library thanks to Grandma. Maddison should be set. They have a daily to do list, and additional chores written on index cards that they can do to earn extra money if they are really bored. No going outside. Do not answer the door. No bickering, and play with the puppies!We shall see. If only we didn't have Diabetes to worry about. I think I can get Maddison micro managed during the day (when swimming isn't happening anyway!) as long as they don't snack alot. I think this will be good for them! Of course, I still feel a bit guilty and worried though, that's just me.

Friday, June 6, 2008

Pumping for 1 year!

Maddison and I both started on our insulin pumps last June 4th, 2007. I love our insulin pump, and I know that Maddison finally does too. She really had a hard time in the beginning with the transition and it took her awhile to stop the "I hate it" remarks. I know repeating 1st grade this year with a whole new Diabetes approach and an attached pump 24/7 really made her feel "different" for the first time after being diagnosed. She was embarrassed and perhaps ashamed.

Two months after starting the pump I almost decided to let her go back to injections after the emotional roller coaster we went through with her hating it, repeating 1st grade and realizing that this was forever. Trying to decide what was best broke my heart right along with hers so many nights. She cried alot. I too cried many, many hours not knowing what what best for HER. What about her confidence? Her management? Her feelings of this disease? I knew in time she would love the freedom that the pump brings. I knew that the control was superior. I hated injecting insulin 4-8 times day just to keep her in range. I hated that she had to have extra injections just because she wanted a snack, or the treat that was being given at school.

But, today she is proud of her pump. Sometimes I have to encourage her to tuck in the tubing to avoid people's curious stares. She responds with an "Its okay, it doesn't make me feel bad", and I just make a long -SIGH- Sometimes she will comment that she gets to eat anything all day without shots, and she thinks that is great. Sometimes she says she feels sorry for kids that can't afford pumps. I hope the day never comes as a rebellious teenager and she wants to go back to injections. I'm hoping I have taught her to be strong and overcome wanting to just "be normal" without a pump. I hope that she knows her pump is an awesome part of who she is, even though I can understand why so many teenagers want to hide their pump and chose to go back to injections. I know I need to just take the days as they come, but you can't help but wonder if you have prepared your child for what lies ahead. Normal life issues are hard enough, add Diabetes and a pump to the mix and it is an entire new concern.

My pump however, has always just been like the wedding ring on my finger. It is there without notice. Day in and day out. When it is not there, I feel naked without it. I do get uncomfortable sometimes with others curious stares, but for the most part I am proud to have it there, tucked in my pocket keeping me the healthiest I can be.

I am happy to have Diabetes in a generation where the pump is so readily available. I feel guilty that we have this technology when so many others have not. I am very grateful that we have the choice to pump or not to pump. I am completely a pump "Naitze" although I promised I never would. I remember being bombarded by all the moms in our support group to start a pump. I love you guys! Pumps are alot more work in the beginning, but the control is far superior......I want all parents of children with Diabetes to be aware of the awesome power of the pump! In the beginning you may have a REALLY hard time getting basal's set right. The constant finger poking will drive you insane, and you will spend alot of time wondering what you are doing wrong. You will want to throw it in the pool, burn it or throw it in the trash. You will cuss and scream on many occasions. Maybe cry alot if you are emotional like me. Then one day, you will see stability that you never had on injections. The pump that you hated will be your best friend, and the A1c you have been fighting for will be reflective of all your hard work. Hooray for 1 year of pumping in our house!

Ouch

Maddison likes to play "Vet" with her stuffed animals. So, of course that means most of the animals have Diabetes. I overheard her saying to the "mom" of her little black horse that "everything will be fine again soon." She said "this isn't cancer or dying, an insulin pump will make it all better." Ahhhhhhhh. I am so relieved that she has this kind of outlook. She could have said alot of horrible things about Diabetes that would break my heart, but she doesn't see things this way at all. Most days anyway.

On Monday Maddison lost our pump site automatic inserter because she uses it when she plays "Vet". All her stuffed animals have insulin pumps, so she has been pretending to change their pump sites with it. I thought about telling her to not use it for pretend play since it is not a toy, and is a very important part of our site changes. We have never had to change a site without it. But, I was intrigued by her pretend Diabetes play and figured it was an important part of her caring for her stuffed animals with Diabetes. So I took the responsibility approach and told her to BE SURE she puts it back in our Diabetes cabinet when her play is through. Somehow, it must be mixed in with toys somewhere. We tore the house apart looking for it since it was site change day for us both. Nothing. Can't find it anywhere.

Maddison freaked a little when I told her I had to manually insert the site. We talked about it for a few minutes and she said to just get it over with. I was so nervous, as though this was the first few site changes. If she screams in pain it makes me flinch, sometimes making it worse. I felt her skin stretch and the needle poke through her skin which grossed me out and made me feel horrible that I do this to my child every 3 days. But, not a peep.

Until last night that is. She was a bit low anyway, so that means drama and irritability which really made me worry. After her juice she began to cry-alot. She pleaded with me to just let her take a shot. But it isn't that easy. She wanted her site in her tummy, which made me even more nervous since it doesn't have any extra fat to spare. Insert, quickly this time.....she screams in pain as I feel it poke through her skin. "Ouch, Ouch, Ouch!" she screamed. Then, that was it. She checked out the new site, wiped the tears from her eyes and jumped off the bed to go play. Zooming around the house laughing while the puppy chased her. I wish it was that easy for my heart to erase the "ouch".

Wednesday, June 4, 2008

Finally

I hate to speak too soon, but last night Maddison stayed 118-130 ALL NIGHT!!! The first stable night in weeks, I am so relieved and excited I had to share! I had made some changes yesterday for nigh time after about a week of patterned stubborn lows followed by highs when I adjusted some things. I guess it is too soon to tell, but MAN, one night of stability without highs or lows is very encouraging and motivating!! Daytime numbers are great too!

We are working on getting swimming right with this being the peak of Summer vacation. Dad failed to take my advice(instructions really) which caused a brutal low of 38 yesterday right after swimming. Maddison needs 15-25 carbs for every half hour to hour of swimming. He thought Maddison going in at a higher 243 was going to keep her from dropping without extra carbs. I guess he feels he knows best. Sometimes he does. BUT, I am the logging queen, the pattern tracker and the basal adjuster. I have earned the title of "mom pancreas" :) I usually know what works, what doesn't and I STUDY this disease daily. I read everything. I know the logic (science really) behind what your body is doing through exercise, stress, illness, ketones, weather changes, excitement......Dad learns from what I teach him. He doesn't put in the additional time in knowing Diabetes and it's tricky ways. This management is alot of hard work, Dad has no idea the extra time and effort I make every day to look over numbers and make sure we are right where we need to be. Most families have one parent that gives 110% and nights like last night I feel I have defeated this demon. It was me. Not the pump. Not our Endo team. Just me. Mom who always knows best right? LOL.......I'm very proud of my efforts today. Most days I can't say that. Total victory, even if just for one night.