From the mouth of ….. a six year old

My 6 yr old son is extremely perceptive. He has always known mommy has diabetes, even if he can’t fully grasp what that means. But if we see/hear diabetes on anything he always points it out.

Lately he’s started asking more questions. He’ll ask why do I have diabetes. And will ask if I wished I didn’t have it. And will he or his brothers have it. Or he’ll say HE wishes I didn’t have it.

I just tell him that I’d obviously rather not have it, but that it’s ok that I do. And my husband chimed in on the conversation the other day and said “Mommy wishes she didn’t have it, but she’s been able to help a lot of people that she wouldn’t have known, if she didn’t have diabetes.” Wow. That right there is one of the #1 reasons I started blogging in the first place. But even before blogging, I was very active in my local JDRF chapter, and I was a Mentor and just wanted to spread the word. To try to change the myths so many people had and still have about this disease.

And the other day I pulled into Sonic to grab something for my son to eat for dinner as a treat, and I was undecided on whether or not I wanted to eat or wait till I got home. He finally asked why I hadn’t ordered yet.. I said “I am just trying to decide if I’m going to eat or not.”

He leaned up and put his 6 yr old little hand on my shoulder and said, “Mommy, it’s very important that you eat because of your diabetes. So I think you should eat dinner.” I almost cried. I explained that I would in fact EAT.. I just didn’t know if I wanted to eat at Sonic. :)

I heart him so much.

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Changes are sometimes good… right?

I’ve been active in my local JDRF chapter for over 20 years …. For the first several years, I went as a walk participant on my mom’s company’s team. And then about 10 years ago I signed up to work on the Logistics team that helps to plan the walk. I started out on the Food Committee and helped organize food for the event. Then I became the Food Chair. Then I was asked to Co-Chair the walk about 6 yrs ago, and I did that up until last year.

We have always had a kickoff event around this time of year – it started out being a really fun dinner/party that was intended to get everyone pumped up for the walk and get excited about fundraising and attending the walk. There were door prizes and giveaways (one year I won a tv!) and I always left there with my chest puffed out a little with pride. And super pumped (pun intended) about reaching out to my family/friends that have supported me all of these years to ask, yet again, for donations.

Then a couple of years ago, with a new regime and lower budget, it was cut way back and fewer people attended and it just wasn’t the same. But I still went. Because I was still the co-chair and the walk has always been VERY important to me.

This year I had not heard anything about a kickoff event. So I emailed my local chapter and I received what appeared to be a form letter of such. Telling me that they’re happy I’m “back” this year (was I gone?) and that this year we are part of a pilot group that is changing the name of the walk from “JDRF Walk to Cure Diabetes” to “JDRF One Walk”. Also, there will be no kickoff event. And no awards event (which we’ve always had, as well. This is where I’ve received all my awards from years past.)

I’m not sure how I feel about that …. Granted I’m just one person. But I’m one person that has been VERY involved in my chapter for over two decades. I’ve helped plan the walk for a decade. And I’m fine with taking a step back to attend the walk with my family again. I’ve actually looked forward to that. My six year old gets excited about going every year. And I hope my twins look forward to it as they get older, too. But I’ll miss the “small” stuff. Like the kickoff, and the awards banquet. I am not sure yet what to expect this year, and I’ll certainly going into it with an open mind … but I am not sure it’s the right thing to do to cut out so much of the stuff that we are used to from years’ past. We’ve made a lot of changes recently – in the last 3 years alone we’ve changed the location, the regime at the local corporate office, downscaled the events, etc.

I’m hoping that this year will be better than ever. It’ll just be different. And sometimes change can be good. :)

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Purple is the new Black

I’ve had a couple of D sightings over the last week …

Last week we took a mini vacation for a road trip down south (in Texas, you can drive for literally 12+hours and still be in Texas, fyi) and one of the stops was an outlet mall. I was walking through one of the stores and saw a woman walk by who had the purple Medtronic pump just like mine. (Why is it that we get so excited when we see someone “like” us out there?? lol) So the next time she walked by, I said, “Hi” and pointed to my hip, where I was sporting mine on my jeans. She just said, “Oh, and yours is even purple, too.” and kept on walking. She apparently wasn’t nearly as excited as I was. haha

Then yesterday I was at Sprouts buying some vitamins for my boys and a young girl that worked there walked by me and said, “Oh you’re diabetic, too!” I said, “Yep. I assume you are, too?” (no pump in site on her – pardon the pun) and she said “Yes. I used to wear a pump, it was even purple just like yours. But I went back to the flex pens about a year ago.” I then did the nosey thing and asked her out of curiousity why she went off the pump (I’ve personally gone off of it before, too, so I know there are pros/cons for everyone.) She said that she’d given herself too much flexibility and was “going downhill fast” so she went back on the pens so she’d have to be more structured.

I told her I understood, I’d been there, and that I thought it was awesome that she’d recognized there was a “problem” and did something about it. She seemed super appreciative of my comments. Then we both went on our separate ways. :)

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New Endo Appt Update

I had my appt this morning with the new Endo .. I was pretty nervous going in, but was determined to go in with an open mind and a positive attitude. I’ll go over the facts from the appt and then y’all can let me know if I’m being too nitpicky? It’s been so long since I’ve had to find a new dr, that maybe some of these things are the norm nowadays?

When I was in the waiting room, they called me back but just called me by my last name and then when I went back with the nurse she never said “Hi” or “How are you?” No small talk.. Just told me to step on the scale, and then measured my height. Put me in a room and asked some basic questions. Then said the dr would be in soon.

(Side note: My old dr is in his own practice, and one thing that did keep me going to him for as long as I did was the one on one aspect of it – his office staff was very small, only 4 people, so everyone knew me as soon as I walked in and you do get treated differently in that type of practice. I knew that this would be a larger practice and I’d be giving that up but hoping that the good outweighs the “bad.)

A few minutes later, he poked his head in the door and said he’d be back in 5 min, but he had a big smile and was super chipper so I thought “so far so good!”

When he came in, there were no introductions, he just sat down and got straight to business. Still had a smile… but never looked me in the eye. First thing was he commented that he knows my former Endo (great *sigh*) and said that they have different styles of practicing medicine (good!) He asked why I was switching and I said it’s nothing personal against my old dr, but he’s very traditional and not very hands on, and I want to have more of a team effort, with someone in my corner to help/guide/support me. He said that this practice is much bigger, very involved in research, and has 6 CDE’s on staff that I would be able to meet with regularly. (Great!)

Then he starts talking about how people with diabetes don’t die from diabetes. They die from complications of diabetes, mostly heart disease related. (I already know this … and I suffer from pretty bad anxiety related to this. I feel like a ticking time bomb sometimes, just convinced I’m going to have a heart attack – but I digress.. )

He was flipping through my medical records and making conversation about how he likes to see an LDL of <100 … mine last year was 155 (yeah, I know … bad) but I told him that if he can find this most recent one from June, it had come way down. He found it and it was 97. (high five, right?) Then he said that he REALLY thinks it should be closer to 70. (Didn't you just say <100 was good?) Ok so we'll get it closer to 70. I've dropped it 58 pts .. what's another 30.

Then he sees my last A1C, which was 6.7. He said that's "fantastic" and he likes to see 6.5-7.0. And proceeds to tell me that there are recent studies that show that if you have an A1C < 6.5 there are higher risks of heart disease. (huh??) So yay me for having an A1c in a "perfect" range (according to this particular dr) but should I NOT try to improve it by going < 6.5 now??

He did check my feet, which my last dr only did maybe twice the entire 12+ years I saw him. (looked fine)

He checked my thyroid and noticed the nodule I have that was biopsied 3 yrs ago (benign) and said we'd keep an eye on it. Said it might be Hoshimoto.

He listened to my heart for MAYBE two seconds. If that. Did not listen to the back (lungs?) just in the front.

At one point he was typing on the computer and glanced over at me and said, "Yea, you're a tad overweight. If you lose some weight, your insulin resistance will be better." (huh??) I told him "Well, I weigh less now than I did when I got pregnant with my twins that were just born last year. It's coming off slowly but surely."

So after all that, he said he wants to raise my cholesterol Rx. Said BP was good so no change there. Wants me to see the CDE in the next few weeks (appt scheduled for end of August) and she and I will be able to work on tweaking my pump settings, etc. (I've been doing those myself for YEARS and am looking forward to having some guidance there.)

Then he got up and left the room … no "goodbye", no "nice to meet you", "see you in 3 months", nada. I had no idea if we were even finished? I sat there for a second thinking "is he coming back?" and when he didn't, I peaked out in the hall … nobody. So I assumed then that we were finished. I grabbed my purse and headed to check out. When I was checking out, the lady said "Ok it looks like he wants you to come back to have a ….. bone density test?" I said, "No, he wants me to see the CDE." She said "Ohhhh ok, that must be what DE means." (huh??)

He also did not ask to see my BG log. Did not even ask anything about my BG's. Did not ask if I needed any Rx's.

There are several doctors in this practice… and I've heard great things about 3 or 4 of them – nothing about this particular one. But when I called to make the appt a few weeks ago, I was not able to get in to see any of the ones I'd heard about for various reasons (booked too far out, and one doesn't take new T1 patients.) So I'm debating whether or not I'm being too picky on some of these things that "bothered" me? He seemed nice enough. But I was naively hoping for less "worst case scenario" talk and more sincere conversation about my diabetes management. I definitely want to meet with this CDE – have heard nothing but great things about her from different people. So maybe if I really like her, and she's the one helping me with my pump settings, etc, then I can look past some of today's weirdness and hope that the next appt is better? Or should I try to see another dr in the practice next time? Not sure if that is frowned upon or not.

Would appreciate any feedback/opinions ……….. Thanks!

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Brittle… and not the candy

I am realizing that the term “brittle” can be very subjective, especially when referring to someone with diabetes.

When I was pregnant with my first son (who is now 6) my chart referred me as a “brittle diabetic”. I asked my OB/GYN what that meant exactly and she fluffed it off and said “Oh we just say that for anyone who has been diabetic for as long as you have.” Ok … whatever. I don’t really like the “label” but if it’s just for medical purposes, it’s ok I suppose.

Then I met a new friend last year who has become one of my closest friends. She has a now 5 yr old son who was diagnosed at age 2 1/2 and she refers to him as a “brittle diabetic”. I asked her once why she calls him that and she said the dr that dx’d him said his is a “very brittle form of diabetes because of how little insulin it takes to crash him, and how few carbs it takes to skyrocket him.”

Hmm.

With just those two definition alone, would it be better to assume that diabetes in general is a “brittle” disease? So many variables contribute to the level of control we can obtain/maintain.

Still not a fan of the term, though. When I hear the word, I think of bones. :)

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I got this

So I have my new Endo appt scheduled for this week (Wednesday morning). I don’t know why I’m so nervous about it … but I am. I haven’t had to switch Endos in over 12 years. And even though I know this move is long overdo.. I’m still anxious/nervous about it. Part of the problem with the last one was I’d gotten too comfortable with him. I was basically only going to him in order to get my Rx’s. And honestly, I’m worried this one will challenge me – even though I know that is a GOOD thing. I’ve managed it myself for so many years, that I tend to get defensive when someone questions why I do something a certain way, or why I DON’T do something a certain way … and I recognize that that is not a good thing – I know it comes from a good place. Just being real.

I am actually in better control, diabetes-wise, than I have been in as long as I can remember. So I need to give myself a pep talk to walk in there on Wednesday with my head held up knowing I GOT this. And maybe it’s just the idea of not knowing what to expect that has me so anxious..? I don’t know.

What I do know is that this is going to be a good change. And that like I said, it’s WAY overdo.

Curious, though, for those that have changed doctors in the recent years, are there any specific questions I should ask HIM or be prepared for – I feel like this should be a two way street. I’ve always heard of it as a “diabetic team” and I’ve frankly never had one of those. :/

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Wordless Wednesday: Update on test strip collection ;)

An update from my post in January… 196 days so far (plus the first few strips I’ve used today)

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