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Monday, May 10, 2010

A day in the life....with diabetes and added alopecia!

So Karen over at "Bittersweet" has challeged the online diabetes community with a week's worth of blog posts.  I'm pretty new to the blogging community, but thought this would be a great challenge and in the process maybe meet some new friends and also learn more about my D-moms and dads who may be up to this week's challenge.  Seeing what they go through in a typical day and having some piece of mind that my husband and I are not alone!  Today's post is "A day in the life...with diabetes".  Since we have two daughters each living with their own autoimmune disease, I thought I would also throw in some of the things that we have to deal with in a typical day that not only includes diabetes, but also alopecia universalis.

THE CHALLENGE BEGINS....

5:20am...I hear my husband's alarm go off for work and I can't believe that another day is here.  I try to get another half hour of sleep in.

6:00am...My husband gets our oldest daughter, Queen Alopecia, up and moving.  She eats breakfast.  When I hear her entering the bathroom, I get up and give our youngest daughter, The Sugar Princess, a kiss on the check and I get up to pick out their clothes for the day.  It's a school day so I pick out their clothes (believe me....if I let them pick out their clothes, it would be a disaster!).  The Sugar Princess was diagnosed with type 1 diabetes on June 12th, 2007.  Since that day she has not slept in her own bed more than a few times.  I guess it's the fear inside of me that I will not hear her cry for help....that I will miss a low...that the unspeakable will happen.  Worry seems to engulf every inch of me and I do sleep better when she is near.  I know the time has come for her to sleep in her own bed, but it's hard to take this next step.  Maybe I should invest in a baby monitor?? 

6:10am...both dogs go outside to do their morning duties.  Queen Alopecia gets dressed and gets her backpack ready.  We usually forget to sign her daily folder the night before so it's at this time that we sign it and add any lunch money or school notes to her folder.

6:30am...It's my job to apply Queen Alopecia's wig.  She has an autoimmune disease called Alopecia Universalis...she is completely bald - complete scalp and body hairloss including eyebrows and eyelashes.  It usually takes more than a couple of tries to make sure it in on right.  She complains about the discomfort alot lately...it's our first spring/summer wearing a wig and the hot weather/sweating/etc. is taking it's toll.  It's a good wig day today and I'm amazed how "real" it looks.  I insert the double sided tape and hope that it keeps the wig in place.  My husband or I get The Sugar Princess up and get her dressed... she is usually a bear in the morning, but you really can't blame her with all the blood checks in the middle of the night!  After she gets dressed, we check her finger and correct if needed.

6:45am...Queen Alopecia gets on the bus for her one hour ride to school!!  The bad thing is that we live five minutes away from the school.

6:46am...Worry about Queen Alopecia and hope her classmates treat her with  kindness.  Upset with myself because I'm not really good at styling her wig....sometimes I wish it was 1980 something because she would fit in quite well.  Seriously....need more practice, but it is getting better.

7:00am...My  husband takes The Sugar Princess to his parents house.  They are the only family members who have stepped up to the plate  to help us with The Sugar Princess's care.  I'm truely greatful for them.  If it wasn't for them, I would have to quit my job!  It's now time for me to get ready to go to work.

7:10am...My husband arrives at his parent's house and The Sugar Princess's blood sugar is checked again and we give her insulin before she eats and then she eats breakfast about 15 minutes later.  She receives two insulins at this time.  Novolog is her fast acting and Levemir is her long acting insulin.  She gets 1 and 1/2 units of Levemir and her Novolog is based on what her blood sugar is and how many carbs she will be eating.  On a typical day she gets 2 units of Novolog.  My husband leaves for work after giving The Sugar Princess her insulin injections.   


7:35am...I leave for work and I always listen to the "Nascar" sirius radio station.  Go Biffle #16.

8:00am...Both my husband and I should be arriving to work.  I wonder how Queen Alopecia and The Sugar Princess's mornings are going.

8:30am...My mother in law drops The Sugar Princess off to preschool and at this time I hope  that they keep a close eye on her.  Did we estimate her insulin to carb ratio right? Will they be able to catch a symptom of a low?  She is only at Preschool for three hours, but type 1 is so unpredictable.  It's a balancing act between insulin, the amount of carbs that she eats, exercise, etc.  

10:30am....I teach third grade PE at this time - the same grade that my daughter, Queen Alopecia, is in.  I wonder how she is doing.  How are the kids at school treating her?  Queen Alopecia told us about the boy who calls her "baldy girl" and I wonder if he is being nice today.  Queen Alopecia has pretty good self-esteem and having someone trying to break her down just gets me upset.  She is strong and I just continue to believe that she will continue to stick up for herself.

11:30am...It's snack time at The Sugar Princess's preschool.  She doesn't get to eat the snack that students bring, but she is allowed to have it....she just cannot eat it until lunch time.  The Sugar Princess is  okay with this, but I know that at times it's hard.  The school is pretty good in informing us on party days and we try our best to be there (at times my mother in law will try to be there too) so she can participate "fully" in the party. 

11:45am...The Sugar Princess is picked up from preschool by my mother in law.  Today, my mother in law told me that as soon as she walked in the door, the preschool teacher said "I noticed that The Sugar Princess was acting kind of funny and complained about how tired she was".  She checked her blood sugar and it was 61.  She was happy that she saw the sign and corrected her with a glucose tablet, but she was scared/worried at the same time.  Welcome to our World.

12:00pm...The Sugar Princess's blood sugar is checked and my in-laws will call us with her number and we will calculate how many carbs to give her and how much insulin she will receive. A Novolog insulin shot is given 15 minutes before lunch and it is based on what her blood sugar number is and how many carbohydrates she is going to eat.  My mother in law gives her the insulin shot when my husband and I are working.  Sometimes my father in law will give the shot too. 

12:01pm....Wondering if we calculated right.

1:30-2:00pm...Sometimes The Sugar Princess will fall asleep and take a nap.  Watching her sleep your mind starts to go wild...Is she sleeping because she is actually tired or is she sleeping because she is low.  Another blood sugar check.

3:00pm...Queen Alopecia gets out of school and The Sugar Princess gets her blood sugar checked.  Correction is given if needed. We give an insulin shot if she is high and we give her some type of sugar if she is low.

3:30pm...I get out of work.....one more day closer to summer vacation...Yippy! Dogs are let outside to run and play.

4:00pm...I get home and Queen Alopecia gets home shortly after me.  My mother in law is already there at my house just to make sure someone is there to get Queen Alopecia off of the bus (just incase I'm running late) she brings The Sugar Princess home and we chat for alittle bit.  The girls go off and play, but first Queen Alopecia takes off her wig...freedom.  She doesn't feel comfortable going to school without some type of headcoving so when she gets home she can't wait to take it off.

5:00pm...Time  for Queen Alopecia to do her homework and when she is finished we practice her multiplication and divison flash cards and also practice her spelling words.  The Sugar Princess...we practice her letter flash cards.

6:00pm...Time for another blood sugar check.  It's dinner time and she will receive not only her fast acting Novolog insulin but also longer acting insulin, Levemir, 15 minutes before she eats.  It's been almost three years since The Sugar Princess was diagnosed yet everytime I give her her insulin shots - I hold my breath.  I pray that it doesn't hurt too much.  I pray that it doesn't bleed - she gets so many little bruises on her body.  I pray that all the insulin goes in and none seeps out when I pull the needle out of her.  I pray that I weighed her food properly and gave her enough insulin...and I pray that I didn't give her too much.  When she is eating, I pray that she eats everything.

6:30pm....Time to let the dogs outside again, feed them, feed the cat, feed the hamster, feed the fish...yikes!
7:00pm...Me time - time to stay connected with my online families.  My D-moms are the greatest women I've "never" met....in person anyway. Lol!  They have been there for me....for friendship, for support, for venting, for letting out all my frustrations, to listen to my worries..............to let me know that we are in this together - that we are not alone.  They "get it"!

8:00pm...I usually have a moment where I think I should go to the basement and get on the treadmill, but then something comes up and I never get that far.......some day!

8:30pm....Daddy gets home from work and the girls are so excited to see him.  He also asks about their day.

9:00pm....Bedtime is here!  Time for another blood sugar test and both girls get a bedtime snack.  The Sugar Princess receives yet another Novolog insulin injection 15 minutes before her snack. 

10:00-11:00pm....Trying to catch up with my school work, but I'm a big procrastinator!!! Find myself getting sucked into some reality tv show.  Dogs are let outside for the last time tonight.

12:00am...I'm still awake...time to check The Sugar Princess's blood sugar.  Correction if needed.

1:00am...Checking The Sugar Princess again if her midnight check was kind of iffy.  Seeing whether or not she is starting to go up or starting to go down. 

1:15am...Finally going to bed unless she is low and then I will be up another hour...ugh!

3:00am....My husband or I get up again to check The Sugar Princess's  blood sugar.  Correction if needed.  Right now we believe that The Sugar Princess is going through the Dawn Phenomenon which means sometimes she starts to go high.   This usually happens, I think, when she is going through a growing spurt.  Time for 1/2 unit of Novolog....another insulin injection.  This disease is really unpreditable.  If she was really active through the day, then sometimes we have to worry about lows in  the middle of the night.  We then have to wake her up so she can drink a juice box to avoid a low.  Time to worry again.

5:20am....it starts all over again.

4 comments:

  1. So...it sounds like you are functioning on way too little sleep! Are you hanging in there OK? You are amazing to do so much with both your girls.

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  2. Worry worry worry. I'm so with you! You have strong beautiful girls! I'm glad they are able to talk to you about their day. It is a blessing that they open up to you.

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  3. Wow, you have two amazing, strong, brave daughters there. Clearly they get that from their amazing, strong, brave parents. Thank you so much for this peek into you day.

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  4. I'm finally getting around to catching up on blogs :)
    Wow you sure don't get much sleep! I'm sure you're ready for school to be out!

    ReplyDelete