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.

Friday, May 21, 2010

Friday, May 14, 2010

Too Carb or Not to Carb

Okay, I'm a day late with this one, but I'm a new blogger!!  It's tough blogging do you find the time to do it?  Anyways....technically day five, but we are going to call it day four...Lol!  Today is supposed to be about whether or not we eat carbohydrates (or whether or not we allow our daughter, The Sugar Princess, to eat carbs or not).  Some people believe a low carb diet is important in diabetes management, while others believe carbs are fine as long as they are counted and bolused for.  Which side of the fence do we fall on?...

Yes, we eat carbs!!  Our Sugar Princess is only five years old so eating carbohydrates is important for her growing body.   It's not everyone's way, but we believe that it is a personal preference.  Of course we don't let her eat alot of junk.  Sometimes we even have to remind her that she can't have something because it's not a healthy choice, not because she has type 1 diabetes.  Don't get me wrong, we try to be as healthy as possible, but every now and again we allow her to endolge in the "special treats" of every meal.  See below...
Her normal breakfast items - waffles, pancakes, toast, berry muffins, 1/2 bagel, eggs, or oatmeal with milk, no sugar added choc. milk, or cystal light (**special breakfast treats...cereal (coca puffs are her favorite), pop tart, or toaster strudel**).  If we have a very long night or we are in a hurry - we keep a box of no sugar added instant carnation breakfast on hand for emergencies.  She is still on multiple daily insulin injections so she has to eat at certain times....we try to keep her on a strict eating schedule.  This lets us keep track of certain trends that might be happening.
Her normal lunch items - she loves sandwiches (egg salad and tuna salad being her favorite), fruit (loves them all), macoroni and cheese, grilled cheese, plain noodles, crackers and cheese, 100 calorie snack packs, sugar free jello or pudding, baked chips, hot dogs, baked french fries, with usually crystal light or milk.  (**special lunch treats...we will add a piece of candy (we love mini size) to her meal or we will count in a dessert...cookies, cupcake, etc.**)
Her normal dinner items - meat, fish, chicken, mashed potatoes w/ gravey, she loves broccoli, pineapple with cottage cheese, corn, beans, pizza, noodles, sandwiches - also loves tuna subs at Subway, with crystal light, water, milk, or diet soda.  (**special dinner treats...fried foods, eating out - , and again we will incorporate a counted carb dessert with cream, etc.**)
Her normal snack items - we live for 100 calorie snack packs, crackers with cheese, 1/2 PBJ sandwich, with 1/2 cup milk or crystal light.
WE COUNT EVERY SINGLE CARB and WE WEIGH ALL OF HER FOOD on an electric scale!!  The calorie king book? We take that book everywhere we go and if it's something that can't be looked up, we ESTIMATE and hope we get it right.  We keep track of different foods and how much insulin we give her.  Some food items, we know to give her a little more insulin than what her insulin to carb says to do or give her a little less, etc.  When she has a perfect number after an estimation, my husband and I give ourselves a high's like we just won a competiton...LOL!  We bascially allow her to eat anything in moderation.  We are not the cupcake police!!  If a classmate brings in a snack, she is allowed to have  it, but since she is still on multiple daily injections, she has to wait and eat it at lunch (if my husband and I are working).  We are going to be pumping soon, so we hope that this gives us a little more flexibility and hopefully it makes her feel a little more "like everyone else".

Wednesday, May 12, 2010

Our Biggest Supporter

Today is day three of "Diabetes Blogging Week": Your biggest supporter. Via Karen ...."Sure, our diabetes care is ultimately up to us and us alone. But it’s important to have someone around to encourage you, cheer you, and even help you when you need it. Today it’s time to gush and brag about your biggest supporter". 

There have been supporters throughout our journey with The Sugar Princess's type 1 diabetes.....
  • My husband supports me and and I support him a great deal (he is amazing)!!
  •  TuDiabetes, Kerri from Six Until Me, Children with Diabetes, Robert from dLife,and Type 1 Parents opened the online diabetes community door....I love all my D-moms (and dads) - what would I ever do without all of you!!  The encouraging words, the friendship, the insight, the love, the knowledge, the "tricks", allowing me to vent, cry, and be me, the laughter (when I need it the most to keep sane!), the understanding....the support.   I love you all.
  • My in-laws...A.K.A: "Papa" and "Beeka" - the only family members who stepped up to the plate and help us take care of our Sugar Princess.  They don't feel comfortable taking complete control yet, but what they have been able to do so far, we are very thankful for.  They call us with every blood sugar check and we determine how much insulin to give, what food to give her (how many carbohydrates, etc).  They took a giant step a couple of months ago and had The Sugar Princess spend the night.  They called us with every meal time, snack time, blood check, insulin injection, etc., but it was still great for my husband and I to finally (in three years) have an overnight "date" together.  I think they would be very capable of making decisions and corrections/calculations on their own, but they are very afraid that they will do something wrong...I (and my husband) don't mind that they check in!! I would probably call them anyways lol, because I'm such a worrier!  It makes me sad that my mother and sisters haven't made any step in helping and sometimes, I admit, it makes me angry, but I'm hoping someday we are lucky enough to have a Meri's Lisa!

Tuesday, May 11, 2010

Making The Low GO! (ABC STYLE)

Day two of Diabetes Blogging's topic is lows.  A low occurs because the body doesn't have enough sugar to burn for energy.  The level of sugar in the blood falls too low.   Causes of a low could be
  • Meals or Snacks are late or missed
  • Exercise
  • Insulin dose is too high (sometimes we have to estimate how much to give to The Sugar Princess...very frustrating)
  • Taking a bath or shower soon after taking a shot of insulin
  • Insulin dose peaking at a different time than usual (this happened sometimes when The Sugar Princess was on NPH insulin...NPH is evil!)
Symptoms of a low blood sugar are...
  • Hunger -- The Sugar Princess usually says, "My tummy hurts!"
  • Shakiness
  • Sweatiness
  • Headache
  • Confusion
  • Drowiness -- The Sugar Princess sometimes gets really tired and wants to go to sleep.  Is she tired or low?
  • Behavior Change -- Sometimes The Sugar Princess gets alittle mean.
  • Vision Problems
  • Loss of Consciousness
  • Seizures
  • Coma and even Death
Sometimes The Sugar Princess can feel a low coming on, but there are other times we check her like normal and a 29 will show up on her meter!!  A 29 and she doesn't feel or she didn't show any symptoms...that is SCARY!  You wouldn't believe how fast I move!  What do we use for lows...a variety of things.  Here are some examples that we use.....ABC style! Lol! (I think I'm procrastinating with my school work again!)

A is for Air Head Taffy (mini size)
B is for Bananas
C is for Cake frosting
D is for Dum Dum pops
E is for EL Fudge Cookies
F is for Fruit roll ups
G is for Glucose Tabs
H is for Honey
I is for Iced Animal Cookies
J is for Jelly Beans
K is for Kudos Bar
L is for Lemonheads
M is for Marshmallows
N is for Necco (wafer candy)
O is for Orange Slices
P is for Pudding
Q is for Quaker Granola Bars
R is for Reese's
S is for Skittles
T is for Tootsie Rolls
U is for Uh-Oh! Cookies
V is for Velveeta cheese with Crackers
W is for Wonka Runts
X is for "Xtra" Creamy Breyers Ice Cream
Y is for Yogurt
Z is for Zucchini cupcakes  (okay, okay...maybe not, but Z was a hard one! Lol!)

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.


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'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 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" 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 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. starts all over again.

Sunday, May 9, 2010

Happy Mother's Day

Happy Mother's Day to all my online mommy friends.  I woke up today to my husband and daughters making me breakfast in bed....with a tray!! Whoo Hoo...I feel like rock star!  Lol.  Seriously it has been a great day so far minus the snow that we got this morning in the northeast...can you believe it... snow in May!!  Anyway, I also received two hanging from Queen Alopecia with pink flowers and one from The Sugar Princess with yellow flowers....their favorite colors.  They also picked me out some new perfume - "Pleasures" from Estee  Lauder.  It smells so good, but the best gift  I got were homemade Mother's Day Cards....

This card (above) was from Queen Alopeica - my oldest (9 years old).  It was so sweet and the
"adventures" part of her card was just too cute!

This card (above) is from my youngest daughter The Sugar Princess - just as special and it says:
"Mommy, I love you very much!"

I hope all my friends who have children have a great Mother's Day.  To all my D-moms out there, here is a poem for you....I'm sure that all of you have heard about it before, but I find myself reading it alot.

by Erma Bombeck

     Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint Matthew."
"Forrest, Marjorie, daughter, Patron Saint Cecilia."
"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a child with diabetes." The angel is curious. "Why this one, God? She's so happy."

"Exactly", smiles God. "Could I give child with diabetes to a mother who does not know laughter? That would be cruel".

"But has she the patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect."

"She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles. "A mirror will suffice."

Happy Mother's Day

Friday, May 7, 2010


Since January 31st, we have been trying to get our insurance to cover the cost of a prosthetic hair device (aka "wig") for our nine year old daughter who was diagnosed with Alopeica Universalis in June 2009.  For those who don't know, a customized wig made out of real hair can cost over $1,200.00 dollars. Insurance or no insurance, we bought a wig in January for our daughter and turned the receipt into our insurances.Our daughter had pretty good self-confidence before this happened to her and we as her parents wanted it to stay that way....sooo we borrowed from our savings hoping that my husband's insurance would cover some of it.  My insurance flat out states that they do not cover wigs for any reason.  My husband's insurance stated that it did cover wigs (how much? was very unclear), but we kept getting denied with the is not a medical necessity.  How could they say that?  You stand in front of my daughter and tell her that.  It has been numerous phone calls back and forth, letters from our dermatologist, etc.  Yes, my daughter is healthy otherwise (knock on wood), but her condition, at times, causes significant emotional distress and embarrassment to her and can have an adverse impact in her socialization.  It's her mental/emotional health that we worry about. 

Today,  I came home to find an insurance letter which I thought was going to be another denial, but I found these words instead....

"Based on a review of the faxed clinical information provided, the above request for services has been approved.....Based on the information provided to us, this approval certifies the medical necessity and appropriateness of the proposed care and services....Excellus BlueCross/BlueShield has approved this request for services and will pay for these services according to the terms of your contract."


Now on to the next insurance issue....getting coverage for our youngest daughter's insulin pump.....hoping to be pumping soon!