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“Happy Memorial Day”

There is nothing happy about the holiday.

It is about honoring our military who were unable to hug their family when they returned from war.

Who gave the ultimate sacrifice in duty to their country.

Who have spouses, children, family, and friends left with an irreparable hole in their hearts.

I ask for one favor if you are BBQing and celebrating the start of warmer weather with family and friends this weekend.

Take a moment to look around you and be thankful.

Hug your loved ones close and think of those who cannot longer do so.

Make memories. Every moment counts.

You never know when that is all you will have left of someone.

…the phrase irks me.  Pet peeve maybe?

No one food is more “friendly” than another.  Healthier, perhaps, but friendly is a personality trait not a food description.

Should you eat that hamburger using glazed donuts as a bun.

With or without diabetes, probably not.  Especially not on a routine basis.

For me, if someone wants to make a claim that something is diabetes friendly, provide us the nutritional information.

Especially the carb counts for the serving sizes.

In restaurants.

For recipes.

Pasta, rice, macaroni and cheese companies…I’m looking at you too.

With that information, anything can be “diabetes friendly.”

It’s about moderation, not deprivation.

Over the years, I’ve lurked and read through the wonderful posts submitted during various Blog Weeks. I’ve decided to take the plunge and join in this time. So playing catch up today before I go to read the wonderful words/thoughts on these topics. You can click the image to connect into this year’s topics and links.

Monday: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

I love my daughter’s Endo and CDE. With the exception of one appointment, they have been with us since D Day and I truly love them like they are part of our family. Our team is focused on quality care and do not quantify us into getting in as many patients as they can for the day. When we got our military orders moving us 270 miles away, the only reason I cried was because I thought we could no longer have them as part of our care team. So with this prompt, I have to focus on our experience with the “local” Endo.

You would think that moving to the Chicago area, we’d have tons of Pediatric Endo’s to access. I thought that too, until we were given a referral to Milwaukee. Insurance only had the one option for us. So I started the process to transferring into the new practice. Red tape after red tape. They wouldn’t even discuss setting an appointment with us until after they had her medical records from our previous team. Week after week, call after call, I was about to lose my temper, I was finally able to set the appointment time for 4 months later. This would put us at the 6 month mark since we had last been seen. Even though this annoyed me, I didn’t stress too much. Awesome Endo/CDE were always accessible to us during this time.

Finally the day of our appointment arrived. We were met with tons of new patient paperwork. Then we started through the process of appointments. After what seemed forever we finally met our new Endo. There was no getting to know you, there was no personable discussion with my child. The first thing he discusses with us is that her A1C had gone up 0.5. The number was actually still respectable. We expected that and in all honesty, we were ok with it after the stress of a move, new school transitions (recess before lunch was difficult for us to figure out how to tackle) and we were doing it all on our own. I said he discussed this and that really isn’t the truth. A discussion to me involves a two way discussion. In actuality, he lectured us about the long term damage, causing tears to form in my daughter’s eyes. He then started to demand that we enroll in a pump class. I explained that we had been pumping for 2.5 years and I wanted to know what was taught in the class. I wasn’t closed minded to attending, but it would seem silly to waste time, insurance charges, transportation expenses to attend something giving information that we most likely were already utilizing. He was adamant that we were doing our child a disservice with her A1C. I tried to explain that we have been looking at patterns and do not see where we can make changes. He continually dismissed me, refusing to look at the logs I had printed for our visit. Finally he relented and glanced at the papers, barely looked back up and said he didn’t see any patterns either. Just leave them as they are and we will revisit it at her next appointment. Muttered again about pump classes and told us the nurse would be in to finish the appointment.

What do I wish they would have seen with that experience?

That I am not an idiot. At the time of the appointment, we had just passed the 3 year mark of living with diabetes. We had been pumping for 2.5 years. My child is sitting in front of you, she is a silly girl, happy and healthy. Most of all, she is alive. I’d successfully kept her alive for those 3 years. Don’t lecture me on her A1C if you can’t offer advice on changes because you don’t see a pattern either.

Get to know your patients. Do not act like I need remedial training when you haven’t taken the time to even get to know us or the unique circumstances that sets us apart from other families. Not saying that we’re more different from other families, well maybe I am. Because EVERY family/person living with diabetes has individual needs. It cannot be compartmentalized and one way does not work for all. It doesn’t even have to take a long time, I know you’re busy and see a lot of patients. But when you walk into the exam room, you should establish a trusting baseline relationship with your patient/family. Bedside Manner 101.

My child is a person. Don’t talk like she isn’t in the room. She is the one who lives with this disease. Right now is the time to act like you even care and that she is more than a paycheck. Treat her with respect and help us by acknowledging that she is important and not just diabetes.

Answer my questions. This is especially when you have a new/transferring patient sitting in front of you. If I ask about your sick day protocol, don’t tell me I need a class. No, I just need to know how it works in your practice. If I ask about accessibility, I’m not asking because I want to call or email all the time. If I do call or email, it is because I need help. Don’t act shocked that a 72 hour turnaround time is not acceptable to me.

That I’m not afraid to fire you. I left that appointment in tears. And then I got angry. Plan of attack formulating in my head. First action, get appointment with PCM to get referral changed. To who, I didn’t know, but I didn’t care at that point, I was never going back there.

And we didn’t go back there. Ever. We were lucky that our previous Endo was still available to us under our insurance. The only downside is that we would have to travel 270 miles each way for the appointments. Travel expenses, every last penny of them are worth the quality and humanized care that receive at our destination.

To the place that acknowledges that:

  • Drilled into us “Kid First” since day 1.
    • You have candy for breakfast on Easter Sunday? Let us show you how that can still work.
    • She loves cotton candy? Let me show you a trick on how to eyeball a carb count
  • Treats us as a partner in her care
  • Takes into account that we are trying the best we can and we’re not perfect
  • They don’t claim to be perfect either but they never stop trying to figure things out WITH us
  • Burnout happens and it doesn’t result in a negligent label. Instead it is ’email us when you need us’ because…
  • We’re here to help. I think this should be top rule for any health care provider.

I have tried to discuss this with your customer care representatives, but apparently they are just as clueless about this transition as me, your customer. Just to make sure we’re on the same page, let me share a brief backstory.

Knowing that my daughter’s pump warranty expired in the Fall I tasked her to start researching the next pump she wanted. I had decided to allow her to do this because what feature might be important to me might not be for her. She is the one who wears it 24/7. She poured over the mailed literature, she explored the websites and she finally decided on the Omnipod.

So I asked her, what makes that one better than the others.

“No more tubes.”

Tubing had never seemed an issue before but about ready to enter Junior High, it was an issue now.

What else could I say to my daughter who is on the cusp of adolescence but ok?

So I filed away her choice and was ready to wait until our warranty expiration.

But then your Sales Rep called to follow up on our inquiry. So I told him we had to wait until September.

And he told me about your Cut the Cord Rebate.

And that if we were to switch over, we would be automatically upgraded to new system as soon as it came out.

And I believed him. Boy am I a sucker.

Why I am irritated

I actually think I’m tip toeing into the anger department.

We decided to pay that $149 on a promised from a representative from your company. And it was a lie.

$149 that we didn’t have to spend. We’re pretty lucky, we have 100% DME. Had we waited just a few more months, we would have had no out of pocket expense.

But we paid it, to be first to get our hands on the new technology. Reserve our spot.

Because we were told that was how it was going to work.

Of course, had we made the switch in September, we’d still be on the list.

But that $149 would still me mine.

And do you know what really chaps me?

You are still lying to your customers.

Look here, remember this? It is on page 2 of the Patient Information Form we filled out.

Do you see #12? The one that says “Have your communication needs met.”

You told me that this was my right as a customer. It certainly is not happening.

When you updated your website, you stated you expected to begin shipping late February to end of March.

Don’t worry you assured me.

Come April, nothing. So I inquired and your customer care can’t figure out where I’m getting my information.

Well, at the website. Apparently you’re not telling them anything either.

So I sent an email inquiry. It was ignored.

But you finally updated your website on 8 April.

Now it’s “over the next few months” to transition. I guess you got tired of the irritated customers.

I’ve been patiently waiting and here we are due for an order.

It must be time for our transition. After all, you’ve told me not to worry, I’ll receive plenty of notice.

But I haven’t, so I call, because maybe I’ve slipped through the cracks.

Now I’m told they think it will happen in about 6 months. You realize this will put us to almost the year point from the big FDA approved it announcement.

Can we please just get a truthful answer?

After all, you told me, that is our right.

August 2017
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