So long, farewell, auf weidersehen....

Photo by Aidan Jones, courtesy of Skelliwag.org

Lately, my life has felt a great deal like this picture - madly spinning plates in an effort to keep them all balanced.  Nothing has changed too greatly, but it seems that the "everyday" stuff has gotten to be more complicated, requiring more attention.  So, seeing as how I am not doing any sort of a decent job with this blog, I'm letting this one go.

I started this blog with the intention of it being a place for me to vent, let out the stuff I otherwise can't, and generally just record my rambling thoughts.  Rather than that, it feels like a wobbly plate that I have to return to spinning every so often, needing attention on a semi-regular basis but not getting enough.  I don't need to feel any more guilt in my life for neglecting things (I have plenty, thanks - if you want some, I've enough to share) so at the ripe old age of I'm taking to heart one of those lessons I heard over and over as a kid....If you can't do a job right, don't do it at all.

Thanks for listening to the rambles for the last little while - see you all around at your blogs or elsewhere on the 'net!

Why diabetes really IS a great, big, fat, awful deal

As the parent of a child with diabetes, I've heard a lot of comments over the last almost-five years regarding the ease with which diabetes should be "managed", and that I am far too wrapped up in trying to care for our daughter.  When she was diagnosed, I didn't know much a whole lot about diabetes except what I'd learned in school and from seeing my brother and FIL deal with Type 2.   Most comments are well-intentioned, even if they are not particularly knowledgeable.  The vast majority of people assume that with Type 1, a shot or two of insulin can be given and everything is just fine (or that it is controllable with diet, or that they will grow out of it, or that some magical elixir sold on the internet at $39 a bottle will cure them - but I digress).  Unfortunately, a shot or two is far from being all a person with Type 1 requires on a daily basis to be well.  

In the last few weeks, we PoCWDs (parents of children with diabetes) have gotten the devastating news of 2 young men passing away due to complications of Type 1 diabetes. One young man apparently died of DKA (diabetic ketoacidosis), which develops as a result of very high blood glucose levels.  The second went to bed, and sometime during the night his blood glucose went very low. He was gone when his mother went to wake him in the morning.  

Both were young men (14) who had been dealing with diabetes for the majority of their life.  Both were from families who were knowledgeable in treatment, involved in the diabetes community, and devoted to keeping their boys healthy.  The bottom line in these tragedies is that A PARENT IS NOT A PANCREAS.  No matter how hard we try, diabetes is not a static condition.  There are literally dozens of factors affecting in our childrens' bodies at any given time - growth, illness in various stages, stress, fear, allergies, high fat meals, low fat meals, changes in the weather (heat/cold), amount of activity in a given day, and so many more that aren't even identifiable.  We can poke fingers day and night, give shots, give snacks, raise money for research towards a cure.....and they can STILL DIE.

Rest in peace, Jesse and Trent.  You will be mourned, and you will be missed.

I haven't posted anything for quite a while now. Every time I think, "Gee, I really should update my blog", my brain goes completely blank. Somehow, I just don't feel as if I have anything to say, or at least nothing that's worth the bandwidth space to say it.

So, I'm just here to let you know that I'm still around, doing all the things I normally do, and things at Chez Rambling are rambling along as usual....I just have a big empty space where the blogging ideas might once have been.  Maybe that space is just full of the spillover from all the rest of the parts of my brain - family, work, diabetes - because those parts have most definitely been overflowing lately.

Perhaps I will find myself full of blog-worthy thoughts and information again sometime soon.
Perhaps not.   I decided not to stress out about it, because really, who needs more stress?

Love, peace, understanding, and a chocolate bar bigger than my head. (My favorite Facebook Flair lately)  Definitely need those more than I need more stress.

How to let go?

My daughter is nearly 13.  As such, she is an expert in EVERYTHING, and I, the idiot formerly known as "mommy", have absolutely no understanding of anything whatsoever.

She also has had type 1 diabetes for 4 1/2 years.  In that time, I, the idiot formerly known as "mommy", have become fairly well versed in amateur endocrinology.  I read, I listen, I watch, I ask questions, and though I can't claim to have any control over diabetes, I think I have a fairly decent working knowledge of what it does to her.

Dear daughter has decided that THIS is the hill on which she will make her stand. Even the mere mention of a blood sugar check from me sends her into a frenzy of eye-rolling, huffing, and grumbling under her breath at me. So I have been instructed to pull back.  Let it go.  LET.  IT.  GO.  Let her be in charge and allow the consequences to evolve.






YEAH, RIGHT.  HOW EXACTLY AM I SUPPOSED TO DO THAT????

I'm trying. I've given over most of the responsibility to the Dear Husband....a wonderful guy, but he's not doing it my way and it makes me want to pull my hair out.....there's nothing wrong with his way, exactly - it's just NOT MY WAY.   Control freak, much?  Yes, thanks for asking.

Here's the kicker.  She wanted to stop going to the nurse for BG checks and bolusing at school. Okaaaayyy....she came up with a plan that she thought she could stick to, and we gave her a week to try.



Well, she didn't stick to it.  Days without testing - she bolused for lunch, at least, but no checks.  Crapola.

So my solution is "fine, don't go to the nurse, but wear your Freestyle Navigator Continuous Glucose Monitoring System" (also known as mom's little sanity saver - I HEART the cgm).  
Hysterics ensue.  Reasons, rational and not-so-rational, fly around the room like crazed hummingbirds, all punctuated by sobs and hiccups.  Sigh.  What's a "stepping back from it all" mom to do?


I'm thinking running away and joining the circus might be in my future.  I'll send a postcard.

Education and misinformation

There's been quite a bit of chatter in the diabetes community during the last couple of days regarding today's Oprah show devoted to "America's Silent Killer", diabetes.  Many were very hopeful that she and Dr. Oz would share helpful, correct information that differentiated between Types 1, 2, MODY, gestational.....since there isn't just ONE type of diabetes.

I will be honest and say that I did NOT have great expectations, because in general any time you hear a show promoting "DIABETES", everything is geared towards Type 2 with no distinctions made.  As such, I did not set the DVR to record the show.

Reading the comments on the Oprah.com site and from the D-Moms via Facebook, it seems that my low expectations may have been too lofty.  SIGH......  Now millions of people have heard Dr. Oz and Oprah say that if diabetics would just stop drinking pop and eating "white carbs", they'd be all better!  Double sigh.....
Apparently there was one brief mention of the differences between Type 1 and Type 2 partway into the show, but they were never differentiated clearly.

To say that all forms of diabetes are the same and should be treated in one way is like saying all forms of cancer are the same and should be treated with the same methods.  Oh, except you really don't ever hear someone telling a person with cancer that it was THEIR fault - if they just hadn't eaten that donut or had they exercised just a little more, their brain tumor wouldn't have developed.  I suppose people with lung cancer do get that blame put on them (if you'd just not smoked all those ciggies), but there are people who have lung cancer who've never smoked a single puff, just as there are people with diabetes who have never been obese, have eaten healthy diets and exercised - but still have the damned disease.  (pardon my French)

So to HELP spread the word about Type 1, please go to Mark Sanchez's Pepsi Refresh Project   and vote to help Mark and JDRF teach schools, teachers and children about the signs and symptoms of Type 1.
Let's try to spread the TRUTH about Type 1 diabetes instead of the Oprah-ized version.

Hello, February

My goodness, it's been a while! Sorry for the lack of posts....life has been crazy normal around here,
which means not getting a whole lot of things done.  I seem to get a little bit of everything taken care of, but nothing is done completely.  Oh, well, I'm not as Type A as I need to be, apparently. :)

Hmmm, so what's been going on around here.....
Arizona was slammed by an enormous winter storm last week.  We had an incredible amount of rain here
in the valley ("of the sun", ha) and the northern half of the state was covered in several feet of snow.  Schools and businesses were closed for days - how come when *I* went to NAU, we never had a snow day?  (Oh, that's right - because snow hadn't been invented yet.)  I spent the weekend in Prescott with some friends, and we had a FABULOUS time, even though I seemingly became a Weeble and was unable to stay upright in the snow.  Of course, I was informed that Weebles wobble but they DON'T fall down...but fall down I did!
Pics may be forthcoming, when I get them from the Official Photographer.  :) 

Things on the school front are not looking good.  This state is NOT supportive of public education, and it's looking like class sizes will be going UP (again) and pay will be going DOWN, most likely significantly.  Oh, and insurance costs are projected to go up about 30%.  If my salary is cut by the amount that other districts are cutting (anywhere from 15% to 40%!!) I may end up owing money to the district by the time all my deductions are taken out. :(   In this economy, I am grateful to have employment and I am even more grateful for the insurance benefits, but to be completely honest, the idea of working harder and not having any take-home money is really, really discouraging.  Part time job, anyone? 

Diabetes continues to throw a monkey wrench into things.  Miss M will have a day or two of lows followed by a day or two of 200+ readings that refuse to come back down.  I have stepped away from the majority of d-care tasks, as they had become a major source of contention between Miss M and I.  The DH is now designated d-care-parent.....how hard has it been for me to let go, you ask?  Well, do you know me at all?  I have a minor little control-freak streak.....just a little one.   He's doing fine - perhaps not doing things the way I would do it, but the peace between  my daughter and I is SO worth the nail-biting I have to do.  

Mr. Boy is growing taller every day...it won't be long until he passes me by.  (go ahead, those of you that know me - say it.  Passing me in height isn't that much of a challenge...)  They are both growing so fast!

Back to school!

It's hard to believe that Winter Break is already ending....two weeks flew right past.
I am amazed at how much I thought I would get done, and how much *actually* got done.  Funnily enough, the two don't quite match.

The husband is recovering nicely from his gallbladder surgery, the kids made it through without causing each other too much bodily harm, and I got a lot of reading and relaxing accomplished - all in all, I suppose it was a nice break.

I'm sorry to say that for some friends, break wasn't so wonderful - Kelly's dad has had surgery, as has Shamae.  I will be keeping them both in my prayers.

Happy 2010 to one and all; here's hoping for a year of good health and prosperity for everyone!

Blogging Mamas!

Here we are, the West Valley T1 support group bloggers, at the annual Christmas party.  If you haven't already, please visit:

Leigh - My Two Monkeys
(me)
Kelly - Chasing Numbers
Tracy - The Ripley Mommy
Wendy - Candy Hearts

We all blog about life in general, life as a mom/wife/pancreas, and how life with diabetes affects us all....in very different ways, yet with a common thread running through it all.  I'm ever so thankful to have my support group and blogging mama friends to keep me (mostly) sane!

Thanks, Wendy, for the photo....my camera is still being most uncooperative. :P~~~~~~~, camera!

The Christmas party

Last night, our diabetes support group got together for our 2nd annual holiday party, at Santa's Winter Home in Arizona.  Thanks to the Musils, who have the most beautifully decorated holiday house EVER!  We even had a special visit from the Jolly Ol' Elf himself, who came in and delivered gifts to all the deserving little people (and not so little people, too).


(imagine a cute little picture here - when I can get my camera running I'll put one in)

It's always wonderful to get together with other families who live with Type 1 every day.  We speak a common language, that of infusion sets and basal rates and carb counts.  "Why is she HIGH?" has an entirely different meaning in our little corner of the world, and when you ask that question to a d-parent, no one gives you the look that says, "I'm calling CPS and the police department as soon as she turns her back". 

In related news, I got Missy Miss to wear a Navigator sensor again - Happy Holidays to me! The kids are going off to Grandma and Grandpa's house while I take the Dear Husband to have his gallbladder removed and he recuperates for a couple of days.  G & G are great at helping her, but I want her to start taking some baby steps towards responsibility of her care when she is on her own.  Hopefully having the Navigator on will help her to manage her numbers a little more without the constant need for finger poking (which she isn't great at remembering to do if a parental person isn't around).   I do so love the Navigator and its constant stream of information....

We at Casa de Rambling wish everyone a Merry Christmas and a healthy New Year full of blessings!

It's the most wonderful time.....

How can it be mid-December already?  Wasn't it Labor Day just a minute ago?


My mother always told me that as I got older, time would seem to go faster.  Once again, she was right.....I wish she were here for me to tell her that in person.  I know she is watching and LAUGHING her head off at me.....I thought I was so smart.  Now I look at my own daughter and wonder if she will look back some day and realize I'm not quite the brainless lump she takes me to be.  I sure hope so.

We here at Chez Rambling are not quite into the swing of the holidays yet.  Tree not up, no lights outside, not much done in the way of gifts.  I have an enormous list of fabulous CWD friends to send cards to, and I promise that I REALLY, REALLY will send them.....just as soon as I get the photos taken to have them made. Eep, I had better get moving!

Many thanks to friends Kelly  and Joanne for the Circle of Friends award!  This comes with 2 conditions:
Tell five things you love and pass it on to five more friends.  So, here we go....

1.  My husband -  Yes, you may give me the "Thank you, Captain Obvious" award to go along with this one.  I've known him longer than I haven't.  He's been by my side through just about every major event in my life and hasn't run screaming away yet.  He's patient and kind and puts up with me no matter what, and he's a great dad to Missy Miss and Mister Boychild.  Is he perfect?  Well, he's perfect for me. :)

2.  My kids - I know, the second most obvious answer. Despite impending teenagerhood and the perils of puberty, and despite threats to the contrary, I wouldn't trade them for anything.  They make me laugh, they exasperate me, and they keep me off balance 99% of the time.  Which is probably really, really good for me, even when I don't appreciate it during the moment.

3.  My job - Some days I wonder how in the world I'll get through, and some days I have to drag myself there. But I can't imagine doing anything else.....when I finally make that breakthrough with a tough kid or someone finds a reason to be proud of him/herself and the smile lights up the classroom, I know that I am doing what I was meant to do.  Would I like a bigger paycheck? Well, duh! But sometimes the pay doesn't show up in the bank account, but in the heart.  Added bonus - FABULOUS coworkers who keep me laughing, keep me on my toes, and keep me sane in the staff meetings!

4.  Insulin - another "Captain Obvious" sentiment to be sure.  If it weren't for insulin having been discovered by Banting and Best and crew, I wouldn't have a daughter to make me crazy any more. Some days I hate diabetes more than others (it is NEVER my favorite thing) , but every day I remind myself to be grateful for that which keeps her alive.

5.  The members of the DOC - The Diabetes Online Community.  I truly believe that if I hadn't found the CWD site I would have lost what remaining sanity I have. From there, it branched off into mailing lists, blogs, the formation of our local support group, and our traveling to events in California and Florida.  Most of my local d-mom friends either blog or post on lists that I frequent, and I have virtual friends all across the US and Canada (and a few farther-flung than that).  I've learned so much from and gotten support from those who have already walked this path and from those who are following in the steps we've left behind us.  Being a parent of a child with diabetes is frustrating, frightening and challenging but the DOC (local and virtual) is the family that keeps me propped up and going when I need help. 

Now, to pass it on to five friends!  OK, four friends.

Kat, who I've known since we were in grade school and who updates her blog less than I do...if that's even possible :)
Michelle,  a CWD mom that I've had the pleasure of meeting in person....she is an extraordinary writer on top of all the other hats she wears
Major Bedhead, whose blog was one of the first I found when I looking for d-blogs and who inspires me to keep on keeping on.  I'm sure she's received this already but I'm sending it to her again.
Splendidly Imperfect Miss M, who I met many moons ago as a teen-aged one-on-one aide to a student and who has become a married-college graduate-mom-super crafter extraordinaire!

I think everyone else I know who blogs has been tagged already.  If you haven't, consider yourself awarded and let us see your list!

I can't say it any better than this....

http://rosefamilyaz.blogspot.com/2009/11/world-diabetes-day-2009-blue-circle.html

Thanks, Wendy!

You want diabetes factoids? I got diabetes factoids....

In honor of World Diabetes Day, I am pleased to present you with Alissa's diabetes factoids.  She wrote each of these to post on her Facebook status to help spread awareness about Type 1 diabetes.  You rock, A! :)

 

26 Diabetes Factoids

by Alissa (ah-LEE-sah) Levenberg, D mom extraordinaire

(in reverse alphabetical order by last word)

(… because Melinda challenged her to, and because it’s more fun that way)

 

Z  #1: Type 1 (aka Juvenile or Insulin Dependent) diabetes is caused by an immune system misfire. The body attacks the cells that make insulin, leaving one 100% dependent on external insulin administration in order to stay alive. A Type 1 diabetic produces no insulin at all; zero, zilch, zippo.

 

Y #2: The cells that make insulin are called Beta Cells and live in things called "Islets" which are located in the pancreas. Once the immune system has begun the attack on the beta cells, there is absolutely nothing that can stop it. Yet.

 

X #3: Cutting edge research has allowed scientists to breed mice with fluorescent T-cells (immune system cells). This makes it possible to understand the process of autoimmunity by observing the life cycles and structures of these cells using MRI and X-rays.

 

W #4: The vast majority of people who have “diabetes” have Type 2, so people tend to think of Type 2 when they think of diabetes. Type 1 diabetes accounts for 5-10% of all cases and is linked to genetics rather than lifestyle. Annually, 70,000 children (almost 200 children a day) develop Type 1 diabetes worldwide.

 

V #5: The complications from Type 1 and Type 2 diabetes are the same. High blood sugars cause damage to delicate blood vessels and can lead to heart and kidney problems, neuropathy of the hands and feet, or loss of vision.

 

U #6: The hormone insulin is responsible for bringing glucose (sugar) from the bloodstream to the body’s cells. All cells require glucose for energy, but if there is no insulin present, sugar just builds up in the bloodstream and can’t be used.

 

T #7: When not enough insulin is present, cells begin to starve and start burning fat in order to survive. This creates a byproduct called “ketones” and causes dehydration, acidic body chemistry, and can quickly lead to coma or death if not aggressively treated.

 

S #8: Injectable insulin first became available in 1922, allowing people to live many years after diagnosis. It was very slow acting however, so people with Type 1 diabetes had to rigorously control their diets and severely restrict their intake of simple sugars.

 

R #9: Until recently, the only way to take insulin was via multiple daily injections. New technologies have produced pager sized insulin pumps that are worn externally and deliver insulin through a catheter. Insulin pumps cannot yet “control blood sugar” as many news stories falsely report.

 

Q #10: All carbohydrates produce a rise in blood sugar, regardless of whether they have actual sugar in them. “Sugar free” items still have carbs. Also, the high fat content of foods like regular ice cream or chocolate will prevent sugars from entering the bloodstream too quickly.

 

P #11: Many families who live with this disease will report that nothing quite tops having people suggest their kids try some diet, exercise, or herbal supplement “cure diabetes” scheme as their biggest pet peeve.

 

O #12: Once you inject or infuse insulin with a syringe or pump, there is no way to take it back. That is why there is such a high frequency of hypoglycemia (low blood sugar). With a functioning pancreas, when blood sugar levels start to drop, the insulin gets automatically turned OFF.

 

N #13: Nocturnal hypoglycemia (night time low blood sugar) is one of the most frightening aspects of Type 1 diabetes. When a person is sleeping, they may not feel lows and it is possible to die in one’s sleep (DIB = Dead In Bed). Many parents of Type 1 children get up and check their sugar several times every night.

 

M #14: Every time a person with diabetes eats, they must calculate: How many carbs is that? What is my current ratio of insulin to carbohydrates? Do I have any active insulin still in my system? etc… This never ending pre-meal exercise leads to the saying: What do diabetics have as an appetizer? Math.

 

L #15: It is very important to make sure that children with diabetes get to be “kids first”. People often express worry about these kids having occasional sugary treats but they need to understand that a) sugar is not the biggest challenge when it comes to messing up blood sugars, and b) you have to make sure you don’t let diabetes take over their lives.

 

K #16: Illness is one of the top challenges when living with diabetes. Blood sugars spike quickly, “ketones” develop, and the body becomes highly insulin resistant. Often it is necessary to get emergency medical treatment to deal with DKA: Diabetic Ketoacidosis.

 

J #17: Just about everything can affect blood sugar levels. Trying to balance insulin dosing, exercise, food, sickness, hormones, growth spurts, schedule changes, weather changes, stress, pump failures and (seemingly) the current location of Jupiter requires the full time skills of an expert juggler.

 

I #18: Hypoglycemia is when there is too little sugar (glucose) in the bloodstream. Since the brain needs a constant source of glucose in order to function, the result of a severe low blood sugar is a seizure. Brain damage and death can occur if the low blood sugar is not treated immediately.

 

H #19: The normal average range for blood sugars in a person without diabetes is 70-120 (or post meals, 140). Having a blood sugar above range is called HYPERglycemia, while having blood sugars below range is called HYPOglycemia.

 

G #20: The liver stores “backup” glucose in the form of “glycogen”. Between meals and during extended exercise, the liver will release part of this store in order to keep blood sugars from going low. The hormone that triggers this release is called Glucagon.

 

F #21: People with Type 1 diabetes should always be carrying an Emergency Glucagon Kit to be used in the case of seizure or severe low blood sugar. This shot will trigger the liver to release its store of glycogen. Here (http://www.childrenwithdiabetes.com/d_0n_022.htm ) is where pictures of the kit can be found.

 

E #22: Continuous Glucose Monitoring Systems are among the most exciting new technologies. In current systems, a tiny wire or probe is inserted under the skin that reads “interstitial” (fluid that is found between the cells) glucose levels. This gets calibrated to actual blood glucose levels. When blood sugars go too low or high, a receiver device will sound an alarm. I have one word for this: Excellent.

 

D #23: Symptoms of Type 1 diabetes include: frequent urination, excessive thirst, fatigue, rapid weight loss, fruity smelling breath, sweating, blurred vision, nausea or vomiting, and rapid breathing. Tragically, many children die each year from the unrecognized onset of Type 1 diabetes.

 

C #24: There is nothing a person with Type 1 diabetes can’t do. From Miss America to Mr. Universe, from professional bicycle racers, to Iditarod mushers, to climbers of Mr. Everest, there are examples everywhere of people who rejected “you can’t” and instead figured out what they needed to do to prove that “you can”.

 

B #25: Insulin pumps greatly facilitate diabetes management. Instead of injecting multiple daily shots, the user can deliver constant micro doses throughout the day. When they eat or need to correct a high blood sugar, their pump calculates the proper dosage. Only about half the total daily dose of insulin covers food. The other half is just for the steady background infusion, called the “Basal”. The one-time doses to cover food or highs are called the “Bolus”.

 

A #26: There are several groups dedicated to finding the cure for Type 1 diabetes. Among them are: JDRF (Juvenile Diabetes Research Foundation) and the DRI (Diabetes Research Institute). The day our kids can throw away their glucose meters, test strips and lancets, lay down their pumps, glucose tabs, frosting tubes, spare pump supplies and Glucagon kits, and we parents can sleep soundly through the night will be truly Awesome.

Diabetes, must you intrude EVERYWHERE?

In the last 2 weeks, Miss M tried out for the school cheer team.  Yes, indeed, my dark and twisty girl who would be goth in a heartbeat if I would let her (well, her sanitized version, anyhow) wanted to join the school jump-up-and-down-and-be-perky squad.  She worked really hard after not making it last year, practicing her dance, her moves, and smiling on cue. 

Monday night, she was dancing in the kitchen, her lovely brother harassing her, when she turned and said, "Mom, I'm going to make it this year. I'm going to smile a lot more.  I think I didn't make it last year because I didn't smile enough. Oh, and because I have diabetes."

'Scuse me?  Did I REALLY just hear that?

I think I swallowed my tongue.  When I regained the power of speech, I asked her to clarify that last statement. Calmly, I hope....she said, "S (a girl on the squad) told me she heard Ms A. talking to someone and she said that C and I didn't make the squad last year because of us having diabetes. We were way better than some of the people who made it." 

OhhhhhhhhhhhhhhhKay.  Start breathing again.  Calm down before responding.  Engage brain.

I told her that I hoped that S was mistaken, and that I would hope that Ms A wouldn't have kept her and/or C off the squad due to diabetes, since she KNOWS that I am always there and she KNOWS that would be highly illegal, not to mention just flat-out WRONG. I tried to remind her that she was only a 6th grader last year, that nearly 40 people tried out for 12 spots, and that mostly 7th and 8th graders made it....sigh. I encouraged her to do her best, to keep practicing and to smile, and see what happens.  She said she was pretty sure it was the diabetes.  I really thought it might have been the crabby attitude and lack of practice, but I kept that to myself.....

Ack.


Tuesday, I mentioned it to the coworker who was helping to judge tryouts.  After her head stopped exploding, she said she would make sure that there was nothing of the sort taking place this year.  :)
I asked her what she thought I should do, and she said go talk to Ms A.....which I *so* did not want to do.  As much as I talk and shoot off my mouth without thinking (KPF, you stop laughing right now) I really do NOT enjoy conflict. Turned out that I had to leave for a doctor's appointment before I could find her - how sad is it that I'd rather have a shot of cortisone directly injected into my shoulder than go have an unpleasant conversation? Tryouts commenced, and when I returned from the doctor to pick up Miss M, she said she thought it had gone well. Coworker M came through my room and told her she had done well - M excitedly asked, "HOW well?" and Coworker M said, "well, the decision is being made now so I don't know, but you were good!"  That made Miss M feel better.

Wednesday morning - nope. No cheer squad for M.
Wednesday mid-day, in the staff lounge, Miss A comes in to the copy machine. I decided to bite the bullet, so to speak, and tell her that a little birdie had informed my daughter that she didn't make cheer because of diabetes.  She was shocked, appalled, angry that someone would say such a thing, and told me she thought M was very close and should try out again next year. I asked her to please, then, TELL Miss M that she did well and that diabetes was NOT the reason she did not make the squad.   She agreed, and on the way out of school at the end of the day, stopped Miss M and said, "Hey! Come talk to me tomorrow. I want to talk to you."  M thought she was in trouble. :)

I don't know the gist of the conversation, but I do know it took place, and M seems to be okay with everything.....I don't know if I'm more annoyed that someone who has been a friend to M since kindergarten would tell her that, or annoyed that she didn't make the squad, or annoyed at diabetes having to stick its stinking nose into every little thing all the dang time.

And in the grand scheme of things, with people losing loved ones this week and mass shootings taking place, this isn't really a major issue - except to one twelve-year-old girl and her heart.

Sigh.

BOO! This year's Walk is in the books

Saturday was our fifth JDRF Walk to Cure Diabetes, with the awesome Halloween theme of "Say BOO! to Diabetes!"  I love that.  I'm trying to find "Boobert", this year's walk logo - he's the cutest little ghostie wearing JDRF snakers. :) This year, I served as a "staff" person, since next year I will be one of the co-Family Walk Chairpeople.  (Chairpersons?)  Holy guacamole, I knew it was a giant undertaking, putting on the world's largest JDRF walk, but really? I had *no* idea exactly how hard it really would be.  I finally cashed it in after being at the park for a 11.5 hours; I think the real staffers were there at least another couple of hours, and they were there all day Friday setting up as well.  Missy Miss and I went over for a couple of hours on Friday, too, but really, it was nothing compared to the total number of hours required.

The good news is that the weather was the best it's been in the 5 years we've been going, and despite the crummy economy there was a great turnout.  No idea on the money yet; I do hope that enough came in to at least meet last year's walk, though I won't be terribly shocked if it doesn't happen.  Many, many of the families I know said that they did not raise as much as they did last year.

The bad news? Once again, no pictures. I had no camera with me; I was so focused on getting there before sunrise and trying to learn all I could that I spaced out taking a camera with me. I am not a good scrapbooker! My membership in Scrappers Anonymous is going to be revoked....again.
Visit Wendy's blog or Kelly's blog for a few lovely pictures of the event - Wendy even snapped one of Missy Miss eating a donut with her own Miss Addy!  (Funny, I never heard anything about her having a donut....)

I look so forward to the day when we don't have to have a walk, but instead we have a "remember when the cure was discovered" party.  Then we will really be able to say BOO! to diabetes.

GOING BLUE! HOW ABOUT YOU?

We are GOING BLUE!!!



Wendy did such a good job with her post about this, I swiped it from her.  Is it stealing if I say she wrote it and give her all the credit? Probably....oh well.  Hopefully, she will forgive me this time. :)

World Diabetes Day is November 14th. In honor of this occasion, Joanne got the ball rolling to create some Tshirts for us to wear....imagine it: TYPE 1 DIABETES being represented all over BlogLand in matching shirts!

It's a beautiful thing. But we have to ACT FAST. In order to get the shirts printed and delivered by 11/14, we need to get the orders rolling. STAT!!!!  (Tired Mom interjects: Wendy is a nurse. She gets to use cool medical terms like STAT.)

So here's the scoop:

We are happy to announce that the price for the shirts will be $15... and that's including taxes and shipping! For any Canadian peeps, it will be $20. Sorry to do that to you, but it's the shipping that kills you. This is the design we're going with:



So, here's what I need from you; if you want to order a shirt (or shirts!), please send an email to: shirts@helpmefred.com with the number of shirts you want, and the sizes you need, plus the address you want it shipped to. You can order unisex(S - XXL), woman's sizes (S - XL), as well as kid's (2/4 - 14/16).

You will then need to send us the money for the shirts via Paypal (very easy and totally secure, I use it all the time). To send money, all you have to do is go to http://www.paypal.com/, click on send money, and enter the email address above in the "To" line.

And that's it, folks. So get those orders in and let's TURN THE WORLD BLUE!!!!!!!!!

Once again, thanks Wendy for the blog entry, and thanks Joanne for getting the BLUE ball rolling!

Got sneakers?

I have about 40 of the JDRF sneaker car magnets in green that I volunteered to sell for our local JDRF chapter.  These are the green magnets that say "Help Find A Cure for Type 1 Diabetes". 

If you are interested in purchasing one, or a dozen :), let me know.  Magnets are $3 each, 2 for $5 plus 50 cents shipping/handling each. Sorry for the crummy picture; I had to use my cell phone camera.
ALL money goes to the Desert Southwest Chapter of JDRF

Awareness, anyone?

World Diabetes Day is coming up soon - November 14th.  Think about the people you know. How many people really understand the difference between type 1 and Type 2?  Well, from personal experience I can say NOT VERY DANG MANY.  (disclaimer:  before Type 1 came to live in our house, I knew a little - now I know far more than I ever wanted to know.)  We have been fairly fortunate with not getting the "She can grow out of it" or "She just ate too much sugar; if she exercises it will go away" types of comments.  There have been some but not too many. 

However, there are FAR too many PoCWDs who have absolutely AWFUL, TERRIBLE things said to them about (and to) their children.  I mean, really - would you walk up to a child who was bald due to chemotherapy and ask her what she ate that gave her cancer, or tell her she just needs a special juice supplement to make it all better? 


Parents of children with Type 1 want to turn the world blue, just like those who support breast cancer research have turned the world pink.  (Please note - we are NOT saying that breast cancer is an unworthy cause by any means....we just want to raise diabetes awareness to the same kind of level.)  Thanks to Joanne, the idea of a tshirt like the one pictured above may just help us spread the message!!  As soon as the details are finalized,  these will be made up and the education campaign will begin!!


If you are in to help spread the T1 awareness message, blog it, post it on FB, tweet about it - whatever you need to do to get the word out.   We're out to turn the world BLUE!

Happy fall (break) , y'all ...sniff, sneeze

It's finally cooling off here in the 7th circle of Hell, aka central Arizona.   Mid October, and the temps are finally in the double digits rather than triple....bringing with them the cool mornings and hot afternoons that require jackets over shorts and tshirts.  I'll take that over 115 any day.  We're sitting with the doors and windows open tonight, a nice cool breeze coming through to take away the "heat" of the day.  It was about 85 indoors at one point, but I was steadfast and did NOT turn the a/c back on.  We have about 6 months of electric bills that are enormously inflated by a/c use, so I try to really keep it off once we shut it down. Generally speaking we are the opposite of the majority of the nation - our heating bills are not the huge ones.  It's the "summer", which generally begins somewhere around April Fool's Day and lasts until the end of September.  

The temperature changes have brought allergy/flu junk along with them.  It seems that Missy Miss has some version of the flu, or some other ugly, nasty virus.   We came home from  the Children With Diabetes conference in La Jolla and she promptly developed a sore throat....two days later, fever and a deep chest cough. She's been sleeping like mad and her blood sugars, well, SUCK.  I've been running a temp rate of 130% to 150% to keep her semi-down to normal....Otherwise it's nothing but 250s and up.   So far the rest of us haven't had much, just slight sore throats and sniffles.  I'm hoping we all can stave off the germs.  Vitamins and LOTS of hand-washing...

The hubs is having more stomach issues.  He went for an ultrasound last week, and this week I get to take him for an endoscopy.  The GI doc thinks it's his gallbladder....which wouldn't be too shocking considering his diet and lifestyle. :)  He doesn't have stomach pain so much as chest pain, which is a little (lot) scary.  He's had enough cardiac exams and tests to know that it's not actually his heart now, which led to trying stomach meds and finally going to the GI.   No one in my family can have normal symptoms; we all have to have freakishly strange things that make figuring out the problem more challenging, and stressful.

More on the CWD conference later this week; since it's Fall Break (woo hoo!) I have some time to try to update the blog more than once a month.  :)

Ever have one of those....

days, weeks, months?

Sigh.

It's been one of them and THEN some lately.

Here's hoping that things will be turning around and the silver linings will become more apparent to me - because right now, I'm having a hard time seeing past the gray clouds.

I know I'm not the only one who feels like this, and I know I have plenty of things to be happy about - the blessings really do abound in my life.  I have to refocus on those.  

Sometimes I just need a reminder.

hhttp://www.hanifworld.com/sky/43-Amazing light rays.html

Four years ago

I have a hard time believing that it was only four years ago that our world changed so dramatically.
August 23, 2005...a date that lives in infamy in my brain. I'm too fried at the moment to write a coherent post, so I'm revising a message I posted last year to our local support group.

Miss M and two Backstreet Boys at Phoenix Children's Hospital, Aug. 2005
(notice the bandaids? she collected one for every finger poke and shot back then)


Four years ago, my husband, daughter and I were sitting in the pediatrician's office waiting to find out why Miss M was losing weight and peeing all the time. I knew in my heart what it was, even though my head and my husband were telling me that everything would be fine and it was something simple.

After a simple urine dip, we knew she had diabetes. The nurse practitioner came back and said that they were waiting on a call-back from the hospital on whether or not we could drive her there ourselves, or if she needed to be taken in an ambulance. I was so confused - there wasn't anything WRONG with her, why would she need an ambulance? After the PNP left, M started to cry, and it took all I could NOT to cry. She was scared - she knew something was wrong, and wanted to know if it was going to hurt, whatever they were going to do. She didn't want to go to the hospital. Because my college friend Jenny's son had been diagnosed a few years before, I knew that we were looking at three days or more at the hospital.

I excused myself, went outside the building, and called my in-laws to see if they could come to Phoenix to stay with Mister Boychild while we took her to the hospital. Honestly, I just needed to get out of the exam room; I felt as if all the oxygen had been sucked out and I couldn't get my breath. I needed to go outside and have a minor breakdown and then pull it all back together. I remember the absolute SILENCE on the end of the phone when I said those words I had been dreading - M has been just been diagnosed with diabetes. My father-in-law has been dealing with type 2 for years, and at that moment, I didn't really know what we were going to face with her, except that it was going to need insulin. I don't think my mother-in-law knew what to say, either.

It turned out that there were no beds available, so they sent us home to wait for a call from the doctor on call to come down later that night. We packed her a bag, called family to tell them what was happening, and decided that it would be better to keep our son with us and on his normal school schedule. He had just started first grade, and Miss M third. The fabulous and wonderful Dr. D. called to tell us to come down - our first conversation - and I asked what she could eat, because the poor girl was "soooooooooo hungry", another one of the symptoms that I had ignored or explained away to myself. She told us to have some milk, a cheese stick, or some peanut butter crackers, foods which we would come to be very familiar with for snacking in the days and weeks ahead. By 6 PM, we were installed in a room at the children's hospital, telling the story AGAIN of what had brought us to the doctor that day. Miss M had her first finger poke before dinner (somewhere in the mid-400's.....I have no real recollection of the number, because it all is a blur) and her first shot of insulin after dinner.

I wound up snuggling up to my little girl in her hospital bed, trying not to jostle the IV in her hand that had been so painfully inserted at midnight. (We had not yet heard of EMLA) It took 3 hospital staffers AND me to hold her down to get the IV placed, in that "cheerfully painted' room with jungle animals on the walls and glow-in-the-dark stars on the ceiling. She was slightly dehydrated and had large ketones, so getting fluids into (and out of) her was a major goal.

1 AM brought another finger poke with one of those prehistoric one-use lancets; she left many bloody spots on the hospital sheets that night. I could hear the night nurse calling the endo on call, asking if Miss M should have another shot of insulin since her BG was 300+, even though it hadn't been ordered. I had yet to learn what the "right" range was, but 300 was obviously NOT where it needed to be.

The next three days were a blur of information-packed days and sleepless nights. Crying in the shower in the parents' bathroom down the hall (recommended by the kind and supportive resident, Dr. G). The Dear Husband would take Mr. Boychild to school, come to the hospital for training, go back and pick up MB, then bring him back to the hospital so we could have all dinner together. Miss M loved getting to call "room service" for her meals, or for a snack whenever she wished - the rest of us made do with cafeteria fare.She thought the hospital was a great place, full of toys and games and people bringing her presents.....she wasn't "sick", she was having a new adventure.

Bringing her home after 3 full days and nights in the hospital was scarier than the day we brought her home the first time. I didn't understand how they could be sending us out into the world to deal with this disease when we had NO idea what we were doing. Now I know that we had it SOOOO much easier than those who had babies diagnosed, but at that time I just kept going back and forth between wondering why she couldn't have just broken her arm and being thankful she didn't have cancer. Cancer seemed so much scarier.....

Fast forward to 2009. The Dear Husband and I are now full-fledged members of the Amateur Endocrinologist's Club, doing our best to be a functional pancreas for our daughter. We are living our "new normal". Miss M is a happy, healthy pre-teen. She's half again as tall as she was at diagnosis, and weighs more than twice what she did 4 years ago. She's on a new pump (the OmniPod is her second insulin pump) , we have a continuous glucose monitor that I dearly love and she hates, a group of wonderful friends who understand completely what this journey has been like and continues to be, and many more friends who, while they don't LIVE this journey, support us in every way possible. So I say today to you all, "THANK YOU". Thanks for being there when I needed to vent; thanks for listening when I cry; thanks for being there when I have questions; thanks for just being there. Thank you to each and every one of you who comes to our fundraisers, walks around at Tempe Town Lake with us no matter how warm it is, wears our team t-shirts, and lets me ramble on about diabetes even if it makes no sense to you whatsoever. Being alone with this is just not something that I could bear; I need and am grateful for the support, friendship and love of family members, friends (both old and new, both local and "virtual").

If you've read this far, wow. You have stamina. :) If you're still reading, please visit watch this video on the Artificial Pancreas Project - the next step to a more normal life for those with Type 1 diabetes. It's not a cure by any means, but it's a giant step forward in normalizing blood sugars and avoiding complications. Those of you who are local, please join with us and 20,000 of our closest friends and relatives at this year's JDRF Walk to Cure Diabetes at Tempe Town Lake on October 31. It's my sincere hope that I won't have to keep writing this same type of post year after year after year......I want to be able to write a post that says "She's CURED".