Thursday, January 29, 2009

The Untitled Post

There are days in your life you will always remember. Yesterday was one of those for me.

I could and should write a lot but I don't have it in me right now.
Yesterday consisted of two less than happy events:

1. Sain is really sick again and ended up back at the ER at Children's She's doing better today and looks to heal soon but it struck me yesterday while talking to the doctors and nurses that I really do know my daughter's diabetes better than any of them. (I got reprimanded for not following "sick day protocol" to the letter. Silly me for doing what actually works for my kid!)

2. I got laid off yesterday. I knew this was coming. I, being the only HR person at the company, had to prepare and process my own lay off. How fun is that? I can honestly tell you, as the parent of a chonically ill child it is more scary losing health insurance than it is losing income. (don't get me wrong, the income part is scary but the health insurance part is more scary)

So here I am, an unemployed single mother of a chronically ill kid. I can't wait for someone in an interview to ask me, "Where do you see yourself if 5 years?" I can tell you for certain that five years ago this is not where I thought I would be!

(I am actually doing okay. Sometimes I wish I couldn't handle things so well -- I think that might actually be more healthy. Oh well, on with the job hunt :) )

Thursday, January 22, 2009

Had to share

I got this from a co-worker the other day... we're thinking of ordering in bulk!

Wednesday, January 21, 2009

How has diabetes changed our lives?

Both kids got to watch the inauguration at school yesterday. As we were getting ready for bed I was told this:

"He said science, Mommy. He said he wants to advance science. He cares about our cure. Our president wants to help us. It makes me so happy I want to cry"

This was from Aidan. My 5 year old, non-diabetic kid who loves his big sister so much that science became the most important part of Barack Obama's inauguration.

05 April 2005 didn't just change Sain's life or my life, it changed Aidan's life, too.

Tuesday, January 20, 2009

Girls are mean!

As much as I love the school Sain and Aidan attend, there's a downside to private school.

PRINCESSES -- lots and lots of spoiled little princesses.

These girls have never heard the word "no", think money is all that counts and think if your family happens to be something other than the "typical" two parent family you are some sort of freak.

There are two girls in particular that bother Sain. One was more of a problem in first and second grade. She definitely fits all aspects of a princess but seems to be starting to realize Sain is not the girl she wants to mess with.

The other is more annoying and bit more of a problem. Last week she threw a ball right in Sain's face during PE. This throw was not an accident -- she was a foot away and Sain had her hand out asking for the ball. The PE teacher's response "these things happen in PE." Fortunately, the school nurse was there at the time and Sain's homeroom teacher dealt with it later as well.

This same girl also consitantly points out to Sain how "having diabetes makes you different from all of us" and how "sad it must be to have divorced parents" and how "poor you must be since you only have one parent."

This girl's mom and I don't get along (haven't since she fed my kindergarten diabetic 8 sugar cookies at a girl scout meeting -- to this day she can't understand why I was angry -- if she only knew what I wanted to say to her but didn't she would really have reason to hate me) so it would do no good to try to speak with her. I also feel like my hands are tied a bit because this family contributes quite substantially to the school.

The school is aware of the problem and Sain knows she can talk to a number of different designated adults if there's a problem and her teacher has been wonderful and dealt with everything right away.

That said, I hate to see my kid picked on. She feels different enough already -- why does a mean little girl who's had everything handed to her on a silver platter feel the need to put Sain down?

(Part of me wishes this girl would push Sain to the edge and Sain would show her just how tough a poor, single-parented diabetic girl is.)

Tuesday, January 13, 2009

Seriously? (part II)

Looks like Medtronic billed Aetna incorrectly. I will be reimbursed the money I just shelled out to keep out of collections and the sensors will be covered.


So, I just got a call from Medtronic and in order to avoid going to collections I need to pay the HUGE balance on my account?


Oh yes, it continues. It seems Aetna, after approving the CGM, hasn't paid ANY of the bills. Nice! Do they think I am made of money? Seriously, if I had the money to pay for these things, you know, the things that help keep my daughter healthy and alive, I wouldn't have to fight the insurance for them.

The other day Sain asked me if I hated anyone. I told her no but now I think that's changed.

Stupid people!

Wednesday, January 7, 2009

Are you sure yesterday wasn't Monday?

I woke up tired - more tired than normal. It felt like Monday despite the calendar assuring me it was Tuesday so I pushed on.

Everything took too long -- traffic was bad, the kids were slow getting ready, even my computer seemed lethargic. Time passed slowly.

9:00 the Simpson's Theme rang out from my phone. I jumped -- the ringer was set entirely too loud for a quiet office. I also jumped because a Simpson's ring at 9:00 means something's wrong. Sain was 499 - ugh! I knew we were pushing it going 4 days on the same infusion set but I was hoping it would last until the evening.

I had them do a correction.

By 10:30 the numbers were down but only a little bit so I was off for an early "lunch". I swung by the house 45 minutes after I left work thanks to traffic, grabbed supplies and headed down to the school. Sain met me in the health room, we did a site change, entered in a correction bolus along with her lunch bolus and I was on my way.

By karate that evening, Sain's numbers were looking better. I was relieved.

Fast forward to 10:00 pm. I hear the distinctive beep, beep, beep of Sain's pump. LOW BG. I check -- 62, juice (the blue juice she hates but that's all that was left) and retest (84 with one up arrow.)

11:47 pm -- beep, beep, beep. Test, juice, test.
2:03 am -- beep, beep, beep. Test, juice, test.
4:12 am -- beep, beep, beep. Test, juice, test.

By 6:15 she was good and stable -- 150 with no recollection of the "beepy" night we had. (side note, it's amazing how well diabetic kids can drink in their sleep!)

Monday, January 5, 2009

Please Help

With a change in government comes a change in FDA leadership. It is the hope of many in the diabetes community that the new leadership of the FDA will take the needs of the millions living with diabetes more seriously.

Many of you know our personal struggles in getting the technology needed to better manage this disease. Sadly, this struggle is not uncommon.

Please consider signing this petition. (The full wording is below.) Sain and the millions of children and adults living with this disease (and those taking care of them) thank you!


We, the undersigned, appeal to the leadership of the U.S. Food and Drug Administration (FDA) to reduce barriers to innovation in diabetes treatment development, in the interest of public health.

The FDA's job is to protect the safety of patients in its use of drugs and medical devices and to advance public health by speeding innovations that make medicines and technology more effective, safer and more affordable. That is its mission.

But we believe the FDA has adopted a stance of excessive caution in its regulation of diabetes drugs and technology that is counter to its duty to serve patient needs.

Specifically, it has established new rules that will impair research and innovation into diabetes therapy. (A copy of the letter sent to manufacturers in November 2008 can be found at

This worries us. For example, new requirements for additional multi-year long-term outcome studies prior to approval for drugs with no cardiovascular signals will assuredly discourage research and innovation to the detriment of public health.

The need for improved treatments for the 24 million Americans with diabetes could not be clearer. Many of the drugs available now have tolerability issues [1]. Poorly controlled diabetes increases the risk of devastating long-term complications, including blindness, end-stage renal disease, amputation, and heart disease. Complications cost our country at least $58 billion per year [2] %u2013over twice of what is spent on technology and therapy annually [3].

Nearly 50 percent of patients in the US do not meet A1c goals [4] using current therapies and technologies. No therapy today stops diabetes from advancing. As patients are living longer with diabetes and therapies stop working, the need for new therapies increases. We need better technology and drugs that help slow or avoid long-term complications as well as more therapies that cause fewer side effects1 and last longer. And, despite the epidemic in the number of diabetic patients, no drugs are yet available that can prevent diabetes. Innovative, safe, and effective prevention is the key for people at risk and for cost savings to society.

Ironically, excessive regulatory hurdles ensure the continued use of the very drugs and devices that have proven ineffective for many patients.

There is no value in an ideal diabetes drug or device if the regulatory costs are so great that the product never makes it to market. Make rules reasonable.

Due to the very nature of the severity and prevalence of diabetes, the following leaders within the diabetes community, who have signed this petition, implore the FDA for the immediate creation of a Diabetes Advisory Council, whose goal would be to improve options for patients. This council would include practicing endocrinologists, diabetes educators and others communicating directly with patients. Our experience, focus, and keen awareness of the needs of the diabetes community would be an invaluable resource to the FDA as it faces the arduous process1 of evaluating new diabetes treatments. Our aim is to improve options for patients.

We urge the new FDA leadership to recognize the urgent need for more safe and effective treatment options for diabetes and to reduce barriers to innovation. More treatment options will benefit patients. The disease is progressive. Delays in the availability of new treatments will only result in tremendous cost to public health and the economy. Our recommendation can benefit patients without sacrificing their safety.

Please sign this petition and tell others about it. Make your voice heard!

Learn more about the issues here:
Problems at FDA prompting slowdowns in development - should patients accept this?

The FDA in Transition: Diabetes Treatment at Risk

The FDA Needs Your Input on Diabetes Medicines!

Petition sponsors:
Kelly Close: Editor, diaTribe
Manny Hernandez: President, Diabetes Hands Foundation; Founder, TuDiabetes
Amy Tenderich: Creator and Author, DiabetesMine
Allison Blass: Author, Lemonade Life
Jennifer Block, CDE: Stanford Medical Center, Stanford University
Nancy Bohannon, MD: Director of Clinical Research, CVD Risk Reduction Program, St. Luke%u2019s Hospital, San Francisco
Bruce Buckingham, MD: Professor of Pediatric Endocrinology, Stanford University
Stead Burwell: CEO, Alliance Health Networks, Inc.
Priscilla Call Essert: Author, My Life As A Pancreas
Gina Capone: Co-Founder, the Diabetes Talkfest Blog
Kitty Castellini: Founder, CEO, Producer and Host, Diabetes Living Today - Talk Radio
David Edelman: Co-Founder, Diabetes Daily
Steve Edelman, MD: Professor of Medicine, University of California, San Diego; Founder, Taking Control of Your Diabetes
Bernard Farrell: Author, the Diabetes Technology Blog
James S. Hirsch: Author, Cheating Destiny
Irl B. Hirsch, MD: Professor of Medicine, University of Washington
Lois Jovanovic, MD: CEO and Chief Scientific Officer, Sansum Diabetes Research Institute
Francine R. Kaufman, MD: Professor of Pediatrics, Keck School of Medicine, USC; Head, Center for Diabetes, Endocrinology and Metabolism, Childrens Hospital Los Angeles; former ADA President
Tom Karlya: Author, Diabetes Dad
Rebecca Killion: Diabetes advocate
David Mendosa: Diabetes Journalist
Kerri Morrone Sparling: Author, Six Until Me
Jenny Ruhl: Author, Blood Sugar 101
Lisa Shenson: Diabetes Parent & Advocate
Scott Strumello: Author, Scott's Web Log
Virginia Valentine, CNS, BC-ADM, CDE, CEO, Diabetes Network, Inc. Albuquerque, New Mexico

[1] "Glycemic Durability of Rosiglitizone, Metformin, or Glyburide Therapy," New England Journal of Medicine, December 7, 2006. ADOPT, a four-year clinical trial of over 4,000 patients, was designed to test the how long diabetes therapies last. In this trial, 23% of those on sulfonylureas (SFUs) and 38% of those on metformin experienced nausea, diarrhea and/or vomiting from taking the drugs. 10% of those on TZDs, 11% on metformin, and 39% on SFUs experienced hypoglycemia. 7% and 14% of those on TZDs experienced weight gain and edema. 12% on women on TZDs experienced fractures. The trial also found that within five years of starting therapy, 15% of those on rosiglitizone (TZD), 21% on metformin, and 34% on glyburide (a sulfonylurea [SFU]) had fasting blood glucose over 180 (~ roughly equivalent to an 8% A1c), suggesting that even if patients could tolerate the therapy, it wouldn't last longer than a few years for many.

[2] "Economic Costs of Diabetes in the US in 2007," Diabetes Care, March 2008, page 13.

[3] "Economic Costs of Diabetes in the US in 2007," Diabetes Care, March 2008, page 13.

[4] "Is Glycemic Control Improving in US Adults?," Diabetes Care, January 2008, page 81.

Friday, January 2, 2009

2008 Survey

Stolen from Kate's blog because I'm too preoccupied to come up with one on my own. (thus far 2009 appears to be the year of high blood sugars and moderate ketones - UGH!)

1. What did you do in 2008 that you’d never done before?
All things related to an insulin pump and CGM and I cried in front of a senator. (actually I was a blubbering mess trying to tell Sain's diagnosis story to a senator)

2. Did you keep your new year’s resolutions, and will you make more for next year?
I tend not to make resolutions

3. Did anyone close to you give birth?
Yes, one friend had a baby in May.

4. Did anyone close to you die?

5. What countries did you visit?
Canada and US

6. What would you like to have in 2009 that you lacked in 2008?
A cure

7. What dates from 2008 will remain etched upon your memory, and why?
24 January – Sáin started on her insulin pump
05 April – Three years with this disease
19 May – Finally back in Toronto (only for a week)
29 July – We found out about Gloria’s stroke
17 September – Approval for Sáin’s CGM
02 October – Sáin started on her CGM

8. What was your biggest achievement of the year?
Fighting and winning a CGM battle with two insurance companies

9. What was your biggest failure?
Missing too many events with good friends

10. Did you suffer illness or injury?
My hips are getting progressively worse (it’s hard for me to admit that) and, as always, I am the poster child for insomnia.

11. What was the best thing you bought?
Medtronic Paradigm 522 insulin pump (aka “Pumpy”)

12. Whose behavior merited celebration?
Sáin for being amazingly tough, Aidan for being Aidan, and my parents for being supportive.

13. Whose behavior made you appalled and depressed?
Most politicians and political commentators, Greedy insurance execs and people who only know ½ the story when making assumptions

14. Where did most of your money go?
Medical, tuition, gas, Diet Mountain Dew

15. What did you get really, really, really excited about?
CGM and the trip back to Toronto

16. What song will always remind you of 2008?
Any of the millions of kindergarten songs Aidan constantly sings

17. Compared to this time last year, are you:
a) happier or sadder? I think happier.
b) thinner or fatter? About the same.
c) richer or poorer? About the same.

18. What do you wish you’d done more of?

19. What do you wish you’d done less of?
Wondering whether Mats Sundin would return to the Leafs. I think they are way better off without him. Good luck Canucks!

20. How did you spend Christmas?
At the Fairmont Hotel Vancouver with my kids – opening presents, going out for brunch, swimming and ordering room service while watching “Willy Wonka and the Chocolate Factory

21. Did you fall in love in 2008?
I fell in love with Sáin’s pump and CGM but that’s probably now the love you’re wanting.

22. What was your favorite TV program?
Hockey Night in Canada and The Hour

23. Do you hate anyone now that you didn’t hate this time last year?
I’ve found hating is a waste of time and energy.

24. What was the best book you read?
“Heart and Soul” by Maeve Binchy

25. What was your greatest musical discovery?
The Fratelli’s (I like Brit Pop)

26. What did you want and get?
Pump and CGM

27. What did you want and not get?
A cure, winning mega millions ticket, a playoff berth for the Leafs (I really want a Stanley Cup but at this point I would be happy for some post season action.)

28. What was your favorite film of this year?
“Wall-e” and “Love Guru”

29. What did you do on your birthday, and how old were you?
I don’t celebrate my birthday so I worked and turned 36.

30. What one thing would have made your year immeasurably more satisfying?

31. How would you describe your personal fashion concept in 2008?
Jeans and hoodies

32. What kept you sane?
Really? You’re assuming I’m sane? Sanity is something that checked out 05 April 2005!

33. Which celebrity/public figure did you fancy the most?
George Stroumboulopoulos

34. What political issue stirred you the most?
Healthcare and research funding

35. Who did you miss?
My sister

36. Who was the best new person you met?
Aiye (if you’re reading this – I really am glad we’ve met), other diabetic parents online, and the folks at the karate school

37. Tell us a valuable life lesson you learned in 2008.
It might be tiring caring for a diabetic child but it’s a heck of a lot better than the alternative.

38. Quote a song lyric that sums up your year.
I see seven towers
But I only see one way out
You’ve got to cry without weeping
Talk without speaking
Scream without raising your voice