A Tale of Two Meters (does your endo say tsk tsk?)

[Ellen]

http://www.dlife.com/diabetes/inform...inologist.html

[Becky Stevens mom]

I'd never thought of having 2 meters before But then again we dont usually get the tsk, tsk now with our present endo for which i am most grateful. We've never gotten that with our CDE, which Im also most grateful.

I hated that! When our former endo or one of the dieticians downloaded the meter and then sat there doing the tsk, tsk foolishness, acting like I was a newbie at this and an ignorant oaf. The fact of the matter here and the only fact that really matters is that endo, CDE, dietician, even parents need to keep the "tsk, tsk" to themselves. They need to use the meter readout and the A1C for the purpose they are best for. As tools to help better manage a disease that is often very difficult to manage. Thank you for posting this Ellen and thank you to Michelle. We've got an appt Wednesday with the nice dietician who doesnt usually feel the need to tsk tsk at me

[joan]

I am thankful our new endo of 2yrs. would never say tsk tsk. For that I am most thankful. Our last endo would make us feel bad if his a1c went up.1 from previous a1c's and tell me that because my son's a1c's were usually in an acceptable range that his d was easy to control. He was an idiot.

[Lisa P.]

Thanks, good article.

I've had friends in several situations who make choices health care providers think are poor (using holistic medicine, choosing against a procedure, that sort of thing). When these friends do come in for care, they first have to listen to a lecture about how wrong they've been. I've seen it other contexts, like religious ones, also. I'll always remember the CDE who was reluctant to help me adjust my Lantus dose because I hadn't yet made the decision to wean.

It makes you wonder what those particular individuals are there for, to help people or because it's a great venue for being able to lord over people.

Also, good reminder to me as a parent, not just in diabetes.

[Jessica L]

We had two meters last school year but not this year and not for that reason. It was easier to just have a school meter and a home meter. We used the one touch last year but this insurance wont pay for those strips so we only use one with the aviva cause of the coding crud.

[Lisa P.]

Originally Posted by joan

I am thankful our new endo of 2yrs. would never say tsk tsk. For that I am most thankful. Our last endo would make us feel bad if his a1c went up.1 from previous a1c's and tell me that because my son's a1c's were usually in an acceptable range that his d was easy to control. He was an idiot.

Gives "D'ed if you do and d'ed if you don't" new meaning.

[joan]

Originally Posted by Lisa P.

Gives "D'ed if you do and d'ed if you don't" new meaning.

Seriously... it was crazy. we always felt bad no matter what.

[BrokenPancreas]

When DD was first diagnosed, I had two..
Just for the reason that I was told that I was testing to much

[hdm42]

We use multiple meters (1 at school, 1 in his room, 1 in the living/dining room), but I log it all anyway. Our endo has never tsk, tsk'd us. Our first team was amazing and helpful, and our current one is pretty good too.

We already feel like it's a grade when that A1c comes in, we don't need to be scolded.

[KatieJane'smom]

They give away meters like candy at D camp. We have several and I weed them out periodically. They are great in an emergency but I hate not having all the info. in one place. The older kids get, though, the less control you have over what they do - as it should be. So scary with D, though!

It's not our endo that tsk, tsks about A1C. He's very much into letting kids be kids and be normal kids. He's not the problem. My dd is the problem. As with every aspect of her life she's very self-driven and very self-aware of her talents and skills as well as her short-comings therefore making her very self-critical. She's the one that is critical of her A1C. I mean I'd rather have her care than not care at all but I try to be very careful about when I ask what her bg is and not make it the first thing we talk about.

We've talked about kids lying about their bg's and abusing insulin and such things that teens deal with. She has some D friends that don't take care of themselves and they call or text her when they are alone & in a crisis which throws her into full blown panic. She's told me that she would never lie about her bg because it would be pointless. All I'd have to do is look at her pump. Her meter feeds directly into her pump so there's rarely the opportunity to put in false numbers or a reason to use a second meter. Oh, Cozmo, I will miss you for that reason alone! Please, please outlast your warranty.

I am beginning to have a little issue with our foreign exchange daughter who is also Type 1. She's started making bg's into a sort of friendly contest. She will say her bg number before a meal and if it's lower than Katie Jane's then she will say "Haha. I'm the winner". Katie Jane does not participate in this but just kinda of acts like it's a game and agrees when Juliane's bg is lower. I've kept my eye on this but yesterday we were in the van and Shots alerted on Katie Jane so she tested her bg. She was high (good puppy) but really not too bad considering it was Halloween and I looked in the rear view mirror just in time to see Juliane grab her meter and test as well. I got the creepy feeling that she was only testing so that she could say her bg was lower than Katie Jane's. Turns out it wasn't but it just gave me a chill to think she might be doing that.

This letter along with the recent loss just puts a fear in the pit of my stomach that won't go away. Even with the most confident kids and the best of care they must grow so very weary of this 24/7 never ending hell that they've been made to grow up with.

Adding this letter I'm sure you've read before - sorry, I couldn't make the link work:

Michelle Alswager's letter:


This is the letter I wrote to be given to the International Board of JDRF today.


Dear International Board Members, JDRF:...Today I sit down to write a letter I never dreamed I would have to write. A letter about my son, Jesse, who many of you have already known about over the last 10 years in his advocacy both nationally and within the State of Wisconsin. But here I am today.


Type 1 diabetes to me is a timeline – a series of numbers – that I will never forget. On 3/3/2000 my beautiful little boy was diagnosed with type 1 diabetes at the age of 3. Tiny, he was. Strong, we were. I remember greeting people one by one in that E.R. to tell them the worst day is upon our family and our lives would be changed forever. I remember watching the nurse poke his little finger and with one glance of her sad face I knew it was type 1 diabetes. I was no stranger to the disease since my aunts and uncles had all grown up with type 1. But since they were all in their 60s and didn’t take care of their bodies due to lack of education, lack of medical technology, this most certainly would be ok for MY son, MY family because we would be strong and we would manage this disease.


I called JDRF from the hospital room because even though I was 4 months pregnant with my son, Joey, I was not going to wait to get on the path to helping him by trying to find a cure. You see, a mom does this for hope and a meaning. They want to look their children in the eye and say, “Son, I’ve done everything I can to find a cure for your diabetes.”


I’ll flash through my 10 years here – several Walk to Cure Diabetes teams – a moderator for the Online Diabetes Support Team (ODST) with my dear friend, Ardy – The International Development Committee – creator of snowboard camps for kids- participant in Children’s Congress 2003 - the Executive Director of a local chapter – a Ride to Cure Diabetes participant for 7 rides – a gala attendee – and most recently a documentary about 12 people with type 1 diabetes doing Ironman – Triabetes.


On 2/3/10 it was a day just like any other day. Jesse and I had stayed up late to watch Kindergarten Cop and I shewed him to bed because he had school in the morning. At 6:30 am I woke him. He said, “Mom, I’m not feeling that great.” Anyone who has a type 1 child knows that it clearly sounded like a sluggish diabetes day. And I went to work knowing his meter was in one pocket, his phone in the other. “How are your blood sugars?”


“Fine mom.” The last words I ever heard out of my beautiful loving son’s mouth. It will haunt me for the rest of my life. At 11:00 am he gave himself insulin. At 3:30 pm when his dad came to get him, he was lifeless, not breathing and we knew a pulse 45 minutes later would be futile. I will save you the details only to give you this: the scene in the E.R. was the same as 10 years ago, the same waiting room, the same people greeted and with the same feeling of dread – the worst day of my life.


Diabetes took our lives. All of us. It took our lives the day he was diagnosed and it took it again when it killed him.


Here’s where I hope you will listen to me. Pay attention. Look at Rik Bonness across the room, who met Jesse in 2003 at Children’s Congress – a boy who made such an impact on Rik, he talks about him in his speeches. Look across at Ardy Johnson, a woman who was always forced to handle the “tough” ODST cases – the deaths of children. Of course I can now relieve her of this burden as this burden is mine and if anything I make it my mission to give back.


In all of my years I have met so many courageous children. But in the same breath I know they struggle so painfully with this disease. After 10 years of this 24/7, I don’t care if you are 13, 23, 33 or 53…you are damn tired. You want to pretend it is not real. You yell, “Mom my blood sugar is 172” when it is really 382. You know why? Because It is NO PRESSURE. You keep several meters and have one “special” for your doctor visits. If you know you are high, you wouldn’t dream of putting it on the “doctor” meter because you feel judged. Don’t believe me? Ask them.

Now is the time to help them. We need to STOP treating blood sugars as good or bad. We need to educate our endocrinologists to assist instead of judge.


They lie because they want freedom. Freedom of this disease.


And before I end my one time before you, I say this: we always keep our mission at the forefront. How does helping others deal with this disease raise money for research?


I will say time and time and time and time again…it is the people for the love of people, that raises money for research.


I will climb my bike again to ride Death Valley, this time for my son, a son I had hoped would join me when he turned 13. Now 13 is gone for him. And now 22 is gone for Lisa Vise. And 23 is gone for Seth Wolf.


I am happy to be the loudest advocate on the planet if it stops just ONE family from gathering up every last meter, pump, syringe, cgm, ketostrip, diabetes book or diet soda into huge boxes in their dining room next to their son’s funeral thank you notes – because I’d rather have a boy with diabetes, than no diabetes at all.


I ask you to step in my shoes for 30 seconds. Then help me help you help families.


Godspeed Jesse. We love you and miss you.


Michelle Page-Alswager