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.





Tuesday, October 22, 2013

In Memory of Shamae


I sit here at my computer screen trying to put my thoughts on paper or should I say computer screen.  I have a heavy heart...my heart is hurting.  An amazing women passed away.  Her name was Shamae.  I've been friends with her for over five years even though we technically haven't met in person.  My youngest daughter has type 1 diabetes and I was looking online for some support.  Someone to talk to.  Someone that could relate to what I was going through.  Someone who "gets it"! I came across TuDiabetes and made myself a profile and then all of a sudden someone wanted to be my friend.  It was Shamae.  She opened up my eyes to the DOC (Diabetes Online Community) world.  She helped me get through some tough frustrating times.  She was a great listener and had a great way of adding a little humor into the conversations to brighten up the mood.  She introduced me to a great group of DMoms (and Dads too).  We all just fit together...our own little family in a way.

A month or two ago Shamae wrote the following status update on Facebook....


"Life is short, live it. 

Love is rare, grab it.

Anger is bad, dump it. 

Fear is awful, face it. 

Memories are sweet, cherish them."


I will forever remember her words of wisdom and will do my best to be a better person, a better mom, a better wife!  The world will not be the same without her.  My prayers go out to her husband and her three precious girls that she leaves behind!  When I look up at the night sky and see the biggest, brightest star.....I will think of Shamae!  

Friday, January 28, 2011

And The Winner is......

I am happy to announce that the winner of Autoimmune Island's
first Sugar Bolus Giveaway is...




Number 18
Amanda - from Kortnie's D-Life

18. Amanda said...


Wow, sounds like fun, we'd love to win. Amanda

JANUARY 21, 2011 2:35 PM


Hooray for Amanda!!!
Amanda - you have 48 hours to send a message to me at rondadarling@yahoo.com . If I do not hear from you within 48 hours, I will select a new winner.

If you didn't win, don't worry!!  Head on over to Pumpsley and Me for another great Sugar Bolus Giveaway.  Also, if you would like to sign up for a "Sugar Bolus" contact Wendy!





Friday, January 21, 2011

My First Sugar Bolus Give-a-way!

Welcome Friends!!
I'm excited to say that I am hosting this week's
Sugar Bolus Give-a-way! 


Did you know that the month of January is...
NATIONAL "THANK-YOU" MONTH?

 What a better way to say thank-you to my readers and/or followers...right?
I have three great prizes for this week's winner!

1. The first prize for the winner is an absolute favorite of Queen Alopecia! 

The House of Buff at KitShack!

What is a Buff?  Well....it is a multifunctional tubular accessory ideal for many activities. Junior Buff® keeps you warm in the cold, plus wickmoisture keeps you cool when it’s hot. The lightweight,breathable, moisture wicking fabric is wind resistant and extremely comfortable to wear.This is not just for Alopecians...these buffs can be worn by anyone.  A matter of fact....I have one that I use when I work-out or when I go running.  These buffs are also worn by contestants on the Hit TV show Survivor - which starts on Feburary 16th, 2011 if you are a survivor fan like me!!  The winner will get a Junior Spiderman Buff!  Who is better to kick some autoimmune disease butt than Spiderman!!! Lol!! 
This was donated from THE HOUSE OF BUFF AT KITSHACK.

In the above picture you really can't see the full design of Spiderman
so I posted below what it would look like if unfolded! Junior sizes are for head circumferences between 19" and 21" (when measured just above the ears).
The color below that looks teal is really another shade of blue.
https://www.kitshack.com/catalog/index.php/cPath/70/sort/2a/page/5

You can wear Buffs multiple ways. 
See the below video to see the many ways that you are able to wear a Buff....they are awesome!!


Queen Alopecia no longer likes wearing a wig.  She wears a Buff everyday and has close to twenty of them.  It is her headcovering of choice and she does everything wearing them....even cartwheels!!  Below are some pictures of Queen Alopecia wearing different kinds of buffs...


Queen Alopecia....School picture - Fall 2010

Queen Alopecia with Santa 2010

Queen Alopecia playing soccer - her buff stays securely on her head!

Queen Alopecia being silly with all her Buffs.

 
2. The second prize for the winner is one of The Sugar Princess's favorite pump cases!!

http://www.angelbearpumpstuff.com/
An Angel Bear pump case!!!  These pump cases are made by Grandma Cindy or Grandma Rita.  I ordered a pump case for The Sugar Princess with a matching pump case and toy insulin pump from Angel Bear Pump Stuff Inc. for Christmas (when she opened her present and found an American Girl doll wearing an insulin pump with a case that matched hers....oh my goodness, the look on her face was priceless!!)  Along with my order was another pump case with the attached message...

"Help us help another child or loved
one be comfortable wearing an
insulin pump"

I decided to add it to this giveaway!! Woot! Woot!  Below is the pump case included in this week's giveaway...


This insulin pump case is large enough to fit an Animas One Touch Ping pump, but Angel Bear Pump Stuff Inc. also custom makes insulin pump cases to fit any insulin pump out there.  They have a huge fabric selection, but you can also send her your own fabric!!  That is pretty cool.....so win or lose check out her website!!  Pictured below is The Sugar Princess wearing Angel Bear's Christmas design and also a picture of her "Type 1 Diabetes" American Girl doll!

These insulin pump cases lay flat and do not "bounce around" when she is active!


The Sugar Princess and her American Girl doll wearing matching pump cases!!


3.  The third prize for the winner is something special....


It is traditional that a bluebird close by will bless you with good health and happiness.

I hope this is true.
I wish this for you.

The bluebird of happiness that the winner will receive is a baby bluebird of happiness.
It measures 2"x2" ...it is the perfect size to put on display on any shelf in your home.
The bottom is also signed by Leo Ward himself.

I have one in my home just like it and thought it would be perfect to include one in this giveaway because...

  1. It is blue and everytime I see something blue....I think of diabetes awareness and the universal symbol for diabetes.
  2. It is a "baby" bluebird....I think of not only my children, but all children.
  3. I'm superstitious so anything that says it is going to bless me and my family with good health and happiness is something that I'm not going to pass up!  Are you superstitious??








Thank you again for stopping by, for leaving comments, for following this blog, for being great friends, for giving much needed support, and for helping me keep sane!!

If you are excited about winning this Autoimmune Island Giveaway, this is what you need to do....

Leave me a comment before midnight on Thursday, January 27th, 2011. Please include your first name. Comments left without a name will be eliminated.

To earn extra entries (post a separate comment for each):

  1. Tweet about this giveaway, then leave a comment with a link 
  2. Share a link to this giveaway on Facebook. Then, leave me an additional comment to let me know. 
  3. Blog about this giveaway. Then, leave me an additional comment containing a link to your blog. 
● No duplicate comments are allowed. Duplicate comments will be eliminated.

● Winners will be selected via random draw at http://www.random.org/.

● Winners' names will be posted here on this blog on Friday, January 28th, 2011.

● After winners' names are posted, winners will have 48 hours to send a message to me at rondadarling@yahoo.com. If I do not hear from a winner within 48 hours, I will select a new winner.


**If you would like to host your own sugar bolus contact Wendy from Candy Hearts and sign up!**














Saturday, January 15, 2011

Glucose, Glucose

The name of the song is "Glucose, Glucose". It was written by Jeff Barry, Andy Kim, and Greg Crowther - from a group called "Science Groove".




Glucose, Glucose

written by Jeff Barry and Andy Kim; scientific lyrics by Greg Crowther
Greg: keyboard, tambourine, claps Lori DeGloria: backing vocals
Gretchen Ludwig: backing vocals
Do: acoustic guitar, bass, drum programming, claps
Kirk L. Van Scoyoc: lead vocals



Glucose -- ah, sugar sugar -- You are my favorite fuel

From the blood-borne substrate pool.

Glucose -- monosaccharide sugar --

You're sweeter than a woman's kiss

'Cause I need you for glycolysis.

I just can't believe the way my muscles take you in. (For you, they'll open the door.)

All it takes is a little bit of insulin

(To upregulate GLUT4).

Ah, glucose -- ah, sugar sugar -- You help me make ATP

When my predators are chasing me.

Ah, glucose -- you're an aldehyde sugar,

And you're sweeter than a woman's kiss

'Cause I need you for glycolysis.

I just can't believe the way my muscles break you down. (My glycogen is almost gone.)

A few more seconds and I'll be rigor mortis-bound.

(Acidosis done me wrong.)

Your sweet is turning sour, baby. I'm losing all my power, baby.

I'm gonna make your muscles ache.

No, no, no!

I'm swimming in lactate, baby.

Yes, I'm swimming in lactate, baby.

Now I'm drowning in lactate, baby.

I'm gonna make your muscles ache.

No, no, no!

I'm drowning in lactate, baby.

Ah, glucose -- ah, sugar sugar -- I used you up and you left me flat;

Now I'll have to get my kicks from fat.

Oh, glucose, glucose, sugar, sugar,

The honeymoon is over now.


I don't know about everyone else, but a little humor on the topic of diabetes makes me stay sane!

Tuesday, October 26, 2010

Queen Alopecia Loves Her Buff!!

Today happened to be picture day at school.  Normally, an elementary student would be excited about getting ready for the big picture day at school.  Wearing new clothes, applying lip gloss, picking out earrings, doing their HAIR, but Queen Alopecia was stuggling this morning.  Today would be the first school picture with no hair.  Yes, she has a wig, but she absolutely hates wearing it.  She said that she doesn't feel like herself; like she is trying to be someone  else, and it's not that comfortable.  I think she looks adorable wearing her wig, but she is the one that has to deal with this situation.....this autoimmune disease.  If she doesn't want to wear her wig, I'm not going to make her.

She said this morning, "Mom, I'm just not going to look the same.......I'm never going to be like I was!" My heart broke for her.  Ofcourse, I try my best to comfort her.  She is beautiful with or without hair, but she is now beginning to recognize the snickers, the laughter, the staring, the pointing......

It makes her smile when her father and I say "You are beautiful", but she longs to hear it from someone else other than her family.  We speak the truth, family or not, but she needs and wants more.

She wore her new pink dress (Is there really any other color??), her hoop earrings, her lip gloss.....  We painted her nails pink and then it was time to pick out some type of headcovering.  She has worn all of them here and there and today it was like trying to create a new hair style.  I could see the frustration on her face.....  The headcovings she had were not working with her dress.  Little did she know that I bought her a few new Buffs for Christmas and it was time for an early Christmas present.   You should have seen her face when I reveled her new Buff from KitShack - this website has the best Junior Buff collection that I have seen online up to this date.  I showed her the Butterfly Buff that matched her dress perfectly and Queen Alopecia's smile was priceless.  She looked into the mirror and had such a big smile on her face.  I think inside she knows that what I say is true - she is beautiful inside and out.....and that I'm not just saying that because I'm her mother.

Hope to post the school picture soon.  Until then.....here is Queen Alopecia displaying some of her buffs!!

Wednesday, October 13, 2010

Mail Exchange.....Building Friendships!

 A big shout out to Cindy from Eaten Alive who organized a mail exchange for our kids.  The best part is that not only kids with Type 1 were included; Their non-D siblings were included too.  Both my girls were really excited about getting involved and communicating with another child their age who might live in a different state or even a different country.  Very exciting!!  Queen Alopecia was matched up with Bridget, Reyna's daughter from Beta Buddies!!  How cool was this?....I read Reyna's blog all the time and now our daughters are penpals and are in the process of building a great friendship.  Very Cool!!  Queen Alopecia was so excited about her package and couldn't wait to open it.  Below are pictures of Queen Alopecia the day Bridget's package arrived...


Queen Alopecia thought that the box was very pretty and she refuses to get rid of it because it's just too pretty to throw away!


Queen Alopecia thought it was too funny that the gift was wrapped inside!

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Queen Alopecia reading every word that Bridget had to say and thought it was cool that Bridget just moved into a new house.  We also will be moving into a new house soon. Bridget told us that her brother Joe has Diabetes and that if she wanted to learn more about it, she could look it up online....lol!  Queen Alopecia said, "I know all about Diabetes!"  Another thing they have in common! Then the question of all questions....Hey mom, can we get a 55 inch TV like Bridget's family?  Daddy thinks that it's a great idea!

Queen Alopecia...."How did Bridget know that I love this stuff"?
Thank you Bridget! I hope you get my letter soon and I hope you like your gift!
Write me back soon!

Saturday, October 9, 2010

Once You Go Tallygear....you won't go anywhere else!

Head on over to Tallygear and try to win (in my opinion) the best insulin pump belt out there for very active children.  The Sugar Princess has many insulin pump packs/pouches/belts and she continues to wear all of them.  Some because they match her outfit.....some because they glitter or sparkle, but the one that she absolutely loves are her Tallygear Tummietote Belts!!  The Sugar Princess is a very active little girl and when she is playing, running, and tumbling around these belts keep her insulin pump in place!  They are also so comfortable that the Sugar Princess forgets that she is wearing her pump and she sleeps with it one too.  You cannot tell that she is wearing it under her shirt.  You know have an opportunity to win one of these great belts and the best part is that they come in different sizes and can be used for other things besides insulin pumps....cell phones, ipods, etc.  I can't say enough good things about them.  Below is The Sugar Princess displaying her tummietote belt!
Wearing her tummietote belt while swimming!!
Wearing her favorite tummietote belt under her shirt!

Thursday, September 9, 2010

P.I.T.A.....Not what you think!

We have a member of our family named ...."Pita".  Pita is our 13 year old cat!  When Queen Alopecia was little she often asked, "How did Pita get her name?"  We told her that it was because Pita loved to eat sandwiches,  but the true meaning is because this cat is a Pain In The Ass!  Did I mention that Pita is actually a "boy", but he is fixed so we still call Pita a girl...lol! This cat constantly follows you around, meows constantly, would sleep on your face in the middle of the night if you would let her (instead settles for your chest), and now that she is old....she can't seem to poop in her kitty litter box!  My basement contains five kitty litter boxes for 1 cat!  Five boxes that each contain a piece of linoleum under it....Hey, it makes for quick clean up, right?  My husband wishes that Pita would find her way outside one night and the coyotes would get her, but she has been with us basically from the beginning.  We (my husband and I...not the cat!) will celebrate our 14th anniversary this November.  Pita again is 13 years old.  We can't get rid of her....the kids adore her....they dress her up in baby clothes, try to hand feed her, etc. 

Well, Pita redeemed herself the night before last.....she caught herself a MOUSE! (Husband left basement door open by mistake....GRRR!) There I was chasing the cat around the house yelling....drop it, drop it (ofcourse I wouldn't say it if the mouse was still alive!).  Finally, Pita dropped the mouse and I got rid of it, but not before the kids got a real good look at it (they were following me around while I was yelling like a mad women..lol). 

There it was....a mouse missing it's head....GROSS!....
Queen Alopecia...."Mom, I guess I know what Pita likes to eat."
Me...."Mice"?
Queen Alopecia..."Mouse Brains!"
Me and The Sugar Princess....."EEWWWWWW"!

Afterwards we noticed that that little mouse must of put up a little fight...

Pita with her "War Wound" on her nose....a scratch from the mouse!
Don't worry.....Queen Alopecia was there to "mend" poor Pita...

Queen Alopecia tried to mend Pita's wound and wrapped her up in a blanket!
I think Pita saw the camera coming and stuck out her tongue!
Poor Pita....you little Pain in the ass!

Tuesday, September 7, 2010

Candy Hearts Give-A-Way!

Listen up people....if you want an insulin pump pack/pouch for your child to use when they are really active you need to look into TALLYGEAR (Tummietote Belts) for your son or daughter.  The Sugar Princess really loves wearing hers and it doesn't move around and bounce around like other pump pouches.  Here are some photos of The Sugar Princess wearing her tummietote...
Front View - You wouldn't even know that she is wearing a pump under her shirt.
(Her favorite color is yellow)
Back View!
The Sugar Princess loves to wear them swimming too because they stay in place and do not move around...the tubing from her pump stays in place too! (Note...she has an Animas Ping Insulin Pump which is waterproof)
My little water bug displaying her tummietote belt and showing off her "Pink" Ping!
She looks so tired, but I think it's because she wore her goggles all day!  She loves to swim!
I can't say enough good things and I'm looking forward to new designs.  I highly recommend them, but if you are unable to buy one right now you are in LUCK!  Head on over to CANDY HEARTS right now and enter to win your child or yourself your own Tummietote.  You don't have to have type 1 diabetes to love these belts!

Saturday, September 4, 2010

We Survived The First Week!

The summer months just went way to fast for me.  I guess because I knew I was going to have to send The Sugar Princess to school.  When she was diagnosed over three years ago at the age of two, my husband and I learned so much about this horrible disease...this beast of Type 1 Diabetes.  Truthfully, it scared the shit out of us.  Everything changed! 

We knew the day would come that we would have to send her to school.  More like....My husband and I dreaded the day that we would have to send her to school.  We were scared!  We knew that we had to make a goal of having The Sugar Princess on an insulin pump before sending her to Kindergarten.  It would be better for her and we also thought that it would be better for the school too.  I had numerous nightmares about the school giving her the wrong dose of insulin in a syringe.  That the "unspeakable" would happen.
So when she was two we knew that we had to take the journey of getting her ready to enter the world of elementary school.  We had our fair share of the evil NPH, then we were on just a sliding scale Humalog and Lantus, then we switched to Novolog and Levemir, and now she is pumping only Novolog.  Throughout, we continued to (and still do) check her blood sugar approx. 8-10 times a day, and we learned how to carb count, bought a food scale and learned to give corrections. 

Let me tell you when we started using math formulas to carb count and give corrections for highs/lows....I was thinking to myself....I remember sitting in algreba class in high school saying to my friends - "When am I ever going to use this stuff??"  Now I use it daily!! 

When this huge box arrived this past summer, I knew what it was and I just wanted it all to go away.  I was angry and I spent the beginning of the summer feeling jealous of other families whose lives are so carefree.

The Sugar Princess opening the box that contains her insulin pump....with a little help from Queen Alopecia.

The Sugar Princess with her Pink Animas "Ping" insulin pump....Older sister, Queen Alopecia is there for support.  The look on The Sugar Princess's face screams fear....if she only knew that I was feeling the same way.
This past July....The Sugar Princess transitioned from insulin injections (up to six times a day) to an insulin pump (one shot every two to three days).  A few weeks before our pump start, I have to admit, "Were we doing the right thing?"...."Will she be okay being hooked up to something 24/7?"....the questions, doubt, nerousness, fear, excitement, etc. just kept building until July 12th, 2010.  The day The Sugar Princess started wearing an insulin pump.  We couldn't believe that we finally made it to this day.

The Sugar Princess displaying her pump proudly....We are so proud of her!
 After our first week with The Sugar Princess on a pump we were wondering why we didn't start this sooner.  Fear played a big part I guess.  We still check her blood sugar approx. 8-10 times a day and there are still highs and lows, but we are still in  the process of "Tweaking", but we love the "Ping" and all of it's cool features...like being waterproof, being able to use a remote, and lets not forget about the "insulin on board" feature. 

The Sugar Princess wearing her insulin pump in the swimming pool with help from her tummietote belt!
We love TallyGear!!
We then felt better prepared sending her to school, but we were still worried.  The only other people who have cared for the Sugar Princess besides me and my husband were my husband's parents.  No other family was willing to be "alone" with her.  At first I was upset, but again fear played a part.  I understand their fear....they are afraid that they will do something wrong.  If our family feels this way, would the faculty and staff at her elementary school be feeling the same way?

We had our 504 Plan meeting at school and it went very well.  They (the Principal, the school nurse, and the teacher) were very understanding, but we could tell that they were nervous.  They have never had a child this young with Type 1 diabetes enter their school.  There are two or three other students who have Type 1, but  they are older and can manage alot of their diabetes on their own.  Our Sugar Princess would need help with everything and we were also worried because at times she doesn't feel a "low" coming on. 

August 31st was the first day of school...

Queen Alopecia and The Sugar Princess on the first day of school.  Notice that Queen Alopeica is rock'in her Buff and The Sugar Princess is very stylish wearing her Gold Glitter Pump Pouch!
The Sugar Princess (and Queen Alopecia) made it through the first week of school.  I have to say that The Sugar Princess has the best teacher and school nurse (Queen Alopecia thinks that her teacher Rocks too!).  We also feel very grateful for having a school nurse at her school everyday. I know some families who do not have a school nurse.  I can't even imagine what they have to go through. 

The Sugar Princess's school have followed our 504/DMMP Plans to a "T" and the best thing is that they communicate with us very well (we have a health journal that comes home every night) are truly concerned about her well-being(is treating The Sugar Princess like their own son/daughter), are cautious (not afraid to check her anytime/anywhere), and very caring!  You have no idea how relieved we are.  It hasn't taken the worry away from me, but boy is my mind a little more at ease.

Yesterday, I woke The Sugar Princess up and this what happened...

Me:  "Sugar Princess it's time to wake up!"

Sugar Princess: "Do I have school today?"

Me: "Yes, you have school today."

Sugar Princess: "I  love school!"

We hope that things contine to go well at school and that both our girls have a fantastic school year!
 
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