Autoimmune Island Pages

I am not a doctor...Please do not mistake anything you read here (on Autoimmune Island) for medical advice.
Decisions regarding you or your child's health care should be made only with the assistance of your doctor and/or your health care specialists.

Wednesday, April 21, 2010

What Do You Worry About?

My oldest daughter, Queen Alopecia, who is in the 3rd Grade, is reading the chapter book "Charlotte's Web".  She reads three chapters of this book for homework each night and then has to answer questions about what she just read. Everyone is in bed (except for me ofcourse...I do the midnight blood sugar checks) and I wanted to read over Queen Alopecia's answer's just to make sure she was answering them correctly.  I then found myself in tears.....See below!

Queen Alopecia lives with Alopecia Universalis (an autoimmune disease where her own body attacks her hair follicles) read more here....

Her answers really make me think about how her days at school go.  Are the students understanding, do they shy away from her like she is contagious or something?  Is she bullied?  Questions that I have asked her before, and she says that school is okay, but is she just saying these things so I don't worry about her?  Queen Alopecia is handling her situation well, but will her self-esteem continue to be strong?  This is what I worry about...
Then to also read that she worries about her sister's "numbers" (Type 1 Diabetes) just breaks my heart all over again.  This is what I worry about too.....
Worries....I seem to be consumed by them :(

Tuesday, April 20, 2010

Endo Appointment - One "Yawning" Time

This past week was The Sugar Princess's endocrinologist appointment.  She visits Pittsburgh Children's Hospital every three months.  Her doctor looks over her blood sugar log and discusses with us any changes to her insulin to carb ratios at meal times and/or any changes with her correction factor (how much insulin to add or subtract based on what her blood sugar number is at the time).  Our goal for The Sugar Princess is 120, but it seems now a days that her blood sugars are above this (sometimes way above)....growth spurt???  We do our best and hope for the best....but I continue to worry.  It is so frustrating!!  We also get the results of a blood test called an A1C.....for my non-D friends - this is a blood test that basically tells us how we have been managing her diabetes.  All of us D-Moms and D-Dads like to call it, "The mommy and daddy report card"!  Our Sugar Princess's A1C goal is below 8.  For the past year, The Sugar Princess has been 7.5 - 7.8, but this trip...7.4!  I know it doesn't seem like alot, but to felt like we just won a big competition or state title or something.  Take that Diabetes!!!

Anyway, the appointment went great.  We discussed insulin pumping and made the decision to take the next step and turn in all the paperwork to our insurance company, etc.  We hope to begin The Sugar Princess on an insulin pump this summer.  Our choice...A pink "Ping" pump!  Really? there any other color??  Ofcourse if they made a yellow "Ping", The Sugar Princess would be all over that.  Yellow is her favorite color.  I'm nervous, scared, and excited about this step.  It's going to feel like we are starting over from day one, but all the positives out weigh the negatives and we hope that we can control/manage this disease even better.

The worst part about the whole trip is when The Sugar Princess gets her blood soon as we walk in "that room" and she sees "that chair"....instant tears.  The look on her face just breaks my heart.  It's the same look I seen on the day that she was takes alot not to just break down and cry, but I save that for behind closed doors.

The best part about the whole trip was when The Sugar Princess began to understand when she would yawn, it would make Daddy yawn.  The Sugar Princess was hooked.  She would fake yawn and fake yawn over and over and each time my husband couldn't fight off the yawning.  It was so funny and we all were laughing so hard while we waited for the doctor to meet with us!  I wonder what they thought hearing all that laughter?? did you yawn??? LOL!

So until our next endo. appointment we will continue to fight this beast of a disease!  It's a constant balancing act between insulin, food (counting carbs), exercise, etc.  We will continue to fight and hope for a cure!!