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".

So it's been a while..

Yeah, well. I'm all aflutter with the beginning of a new school year, buried in meetings and paperwork and trying to figure out how to put too many desks in a too-small room (with not enough air conditioning).

So for your amusement while you wait for me to come up with an ACTUAL blog post, here's a meme. Stolen from Kris, who got it from someone else, who probably got it from someone else, and so on, and so on. (How old am I, that I reference that shampoo commercial? Geez)

8 Things I...

am looking forward to

• cooler weather
• my kids coming home from grandma's house
• a paycheck after a summer without one
• the cookout with my side of the family this weekend
  
• meeting the kids in my class
  
• the JDRF walk (October 31, Tempe Town Lake)
• having my room completely ready for the first day of school
  
• putting my head on my pillow tonight

did yesterday

• laundry
• Facebook
• back to school staff meeting
• started rearranging my messy classroom
• fixed a broken bookshelf
• talked to my kids on the phone
  
• watched a weird movie with my hubby
• zonked out early

wish I could do

• talk to my mother
• find a cure for diabetes
• lose weight easily
• speak another language fluently
• get people to understand why public school is important and quit to blaming teachers for all the ills of the system
• go on a nice vacation with my family
• keep my house spotlessly clean
  
• get everything done in a day that I mean to get done in a day

shows I watch (thank goodness for DVDs and DVRs)

• Grey's Anatomy
• Army Wives
• TrueBlood
• Nurse Jackie
• The Secret Life of the American Teenager
• Iron Chef America
• Law & Order (any of them)
• CSI (any of them)

favorite foods

• grandma's homemade noodles w/roast beef (which I haven't had in 20+ years)
• chips and salsa
• most any kind of pasta
• eegee's
  
• fresh berries of any kind
• a well-grilled steak and baked potato
• the chicken/pine nut/tomato/gorgonzola salad at Sauce
• the spinach artichoke dip at Houston's

places I'd like to visit/travel

• New York
• Australia
• Ireland
• Hawaii
• San Francisco
• Seattle
• Chicago/greater Chicagoland (to see family)
• San Diego

people I'm tagging

• Nah, do it if you like. No pressure. :)
  

The Winding Down of Summer

Doesn't that sound ridiculous? It's July. Here in Arizona, the season known as summer will continue until at least mid-September. Then we may see the end of 100+ degree days, and by mid-October, it may be necessary to wear long sleeves in the morning on the way to work (but run the a/c in the car on the way home).

So why is summer winding down?











Because schools starts in TWO WEEKS. Yes, indeed, the kiddos of Arizona will be returning to pencils and books and homework in mere moments. We teachers will be back even sooner.....and there ARE districts where teachers have ALREADY returned to work!

But it's SUMMER, you say! How can you go back to school when it's not even close to Labor Day? How can you send kids to the playground when it's 110 outside in the shade? Well, let's put it this way. The folks who make the calendars aren't the ones who are on playground duty, you know what I mean? Although, to be fair, if we started in September, we'd go well into June. You know, June....when the average temperature in Phoenix is 105, and our high was once 122?

It's hard to have a "summer vacation" when summer last 6 months.

What's New?

I'm feeling the need to post something, even though there's nothing interesting to post...it's hot. Evil wicked nasty hot - but that's Arizona in July. Nothing new there.

We went to the water park last night, and Mr. Boy smacked his head in the wave pool. Nothing new there, either - if there is a way to injure himself, he will find it. (And he's fine - some ice on the head and a quiet evening fixed him up fine.)

Tomorrow is the 3-month endo appointment....time for another report card on "how good are you at being a pancreas?". Dr. D never says anything to that effect; she actually is very complimentary at how hard we work to take care of Miss M and the D Monster, but it always feels like a failure if her A1C goes up and a screaming success if it goes down. Feeling like a failure at managing a chronic illness in a hormonal pre-teen - nope, still nothing new. We do have good days, and we have bad ones, and the goal is for the good to outweigh the bad. Doesn't always turn out like that, though...

Replacement of the air conditioners at my school continues, so there is no WAY that I can go work in my classroom until it's finished...maybe next week? Summer is rapidly coming to a close for us, at least in terms of vacation....climate-wise, it will be summer for another 8 weeks at least. Not blast-furnace hot, but hot enough that going out to recess isn't a heck of a lot of fun for the kids (or the teachers). Putting off returning to my room? Nope, been doing that for more years than I can count.

Tonight is the midnight opening of Harry Potter and The Half-Blood Prince. Why again did I agree to take three 12-year-old girls to this when we have to be at the clinic at 9 AM tomorrow? Oh, yeah, because I'm CRAZY. (that's definitely not anything new) Two weeks from now, when it comes out in IMAX 3D, we're going to have to go see it again, I'm afraid - but the idea of Quidditch on a 3-story tall screen really makes my stomach feel queasy. Mom = motion sick = old news.

So what's new with you? :)

Love/Hate relationship

Diabetes technology is a wonderful thing. Had my daughter been diagnosed 40 years ago instead of 4, we wouldn't have home blood glucometers that give a readout in 5 seconds using the tiniest drop of blood. We wouldn't have a blood ketone meter that tells in a half a minute whether or not she is in danger of developing diabetic ketoacidosis (DKA), which can be fatal. We wouldn't have a pump, a CGM, rapid-acting insulin, carb counts on all the food she eats, or the wide variety of sugar-free products that are available to us today. Not sure, but we might not have even had disposable needles - the idea of sharpening a needle after boiling the syringes on the stove pretty much turns my stomach. (If she was born 40 years ago, she wouldn't be my daughter, either, but that's beside the point.)

The downside to all this is that all this technology takes time and effort and brainpower that I often don't have to spare in order to keep it working. I LOOOOOOVVVVEEEE having the continuous glucose monitor that reads her blood glucose levels every 5 minutes. OK, for the purists out there, it reads interstitial fluids rather than blood, but it still tells me where she is and if she's trending up, down, or relatively stable. FABULOUS information that is available with the push of a couple of buttons rather than a finger poke every 5 minutes.

Downside 1 - batteries. Tonight, I used up the last 3 button batteries I had trying to get a new CGM sensor and transmitter to talk to each other - a new battery comes in each box, but that doesn't mean that it's a new battery that is fully charged! After 30 minutes of sweating and swapping and praying that the last one would work, I heard the lovely little "BEEEEEEP" and saw the "New Sensor Detected" message I had been trying to find. Now, the 10 hour wait for calibration begins...which is a whole 'nother downside for a different day.

Downside 2 - carrying all this stuff around. The pump is tethered to her body by the tubing of the infusion set. This doesn't mean that it stays put, though - I just watched her stand up and screech because the pump fell towards the floor, yanking on said infusion set....OUCH. No pockets means nowhere to put the pump, the CGM receiver (which is not tiny, either), the lancing device and the test strips, et cetera, et cetera, et cetera.

Downside 3 - she hates all this stuff. HATES it. She doesn't want to go back to shots, because I've given her the option, but having multiple pieces of equipment to carry around with her is terribly annoying. She LIKES not having to poke her finger 10 times a day or more, but the need to drag everything with her really ticks her off sometimes. Understandably, of course. Who wants to be tied to a couple of remote controls constantly?

Shortly after M was diagnosed, we went to a research presentation and heard a local doctor speak about putting kids on pumps. His idea was to incorporate the insulin pump into a cell phone/MP3 player. He said that would guarantee that EVERY teen would want one, and I think he is correct! If only there was an iPod/Phone/Pump combination.....it wouldn't take care of the battery issue, but integrating EVERYTHING into one easy to carry unit would sure be a step in the right direction!

The Numbers Game

Growing up, I was never one of those kids who was a math whiz. Sure, I got by in math class, but numbers were not my friends - I found my comfort in words, in books, in language. I could make sense of the most complex sentences, but throw the Pythagorean theorem at me, and I was lost.

High school algebra was the first time I ever got a failure notice in school...Pulled out a B, I think, but I choked my way through whatever math classes were required, and I certainly didn't sign up for any that were not necessary to get me through. When I went to college, I avoided certain career paths that were going to put me in multiple higher-level math classes, because math is NOT MY LANGUAGE. Maybe I'm just not an ordered, logical thinker (Me? Really?) but when it comes to numbers, they may as well be some exotic foreign language. Or, they might be English, but as spoken by the Swedish Chef.

So, isn't it ironic that my life nowadays REVOLVES around numbers?

Blood glucose readings


Continuous Glucose Monitoring


Insulin on board stats(IOB)

Carb Counts



Don't forget the quarterly Hemoglobin A1c tests, doctor's copays, serial numbers for the meters, the pump, the CGM transmitter, the CGM receiver, the phone numbers, insurance id numbers, the fees for doctors, specialists, prescriptions....the numbers never end.

Diabetes is an insidious, cruel, time-consuming and heart-wrenching disease....and it's ALL ABOUT THE NUMBERS.

Bork, bork, bork!!











PS...is it any wonder I find numbers confusing? This is what the temperature readout said in my car yesterday, less than 2 minutes apart...






By the way, the 100-degree reading was a LOT closer to reality
than the 80...sigh...