Tuesday, April 4, 2017

Gluten-free vs. Celiac-safe

Here's the thing about being diagnosed with Celiac disease in the height of the "gluten-free" craze: everyone think that everything is Celiac safe. I even thought "Yay! There are so many gluten free options for eating out!" What a great thing, right? 

I learned, very quickly, that wasn't true. Gluten-free food in a restaurant doesn't mean that it is celiac safe. Grilled chicken salads (one of my favorite thing at Wendy's, pre-diagnosis), are suddenly a no-no. Why? Because they cut that grilled chicken on the same surface that they cut the breaded chicken. So why not just tell them not to cut it? Perfect plan, right? Not so much. They also use the same tongs to pick up the grilled chicken that they use to pick up the breaded chicken.

So something that seems gluten free (apple pecan chicken salad), suddenly isn't Celiac safe.
This throws a wrench in a lot of plans for me.

Today, Papa John's Pizza released that they are now going to offer an "ancient grains" pizza that is gluten free. Hmmm.... this is interesting to me. They are only releasing it in certain cities, and Nashville happens to be one of them. So I went to the website and went to the FAQ section. They have a whole section regarding the new gluten-free crust! Good for them!
First I saw this:

Promising.... they don't make the crusts in store, so there is less chance of cross contamination! As a person with no gastro symptoms of celiac disease, I can't tell if I have been "glutened" so I am always trying to pay attention to things like obvious cross contamination.
But further down on the list, I saw this:

Bubble BURST. No chance of being able to eat this ridiculously overpriced, gluten-free, personal pan pizza. It would be nice, but I didn't get my hopes up. Now I'm waiting to hear from all the people around me say "Oh! Papa John's has a gluten-free pizza now!" And I get to go back to explaining the difference between gluten-free and Celiac safe.

*Full disclosure: I never ate a lot of pizza even before Celiac since it usually wreaks havoc on my blood sugars. But sometimes a girl just wants pizza.

Thursday, March 16, 2017

Good Job...Now Show Me More

With the recent national attention being brought to the skyrocketing insulin prices in the past several years, pharmacies, drug companies, and insurance companies have been shed in a pretty poor light. You know it is important when national media is reporting on it. This has been going on for a while, and I haven’t had much to say on the subject. Not because I don’t think it’s an issue, but because there are people out there with a bigger voice than mine, who have been raising attention to the issue and having fantastic conversations with each other, and the pharma/insurance companies as well.

I understand, as a company, things like this shed your business in a poor light. It feeds the “big, bad, out-for-profits-not-people” image that companies hate. So what do you do as a company to fix that image? How do you make the general public begin to say “maybe this company isn’t so bad?”

Well, you do what CVS and NovoNordisk did today. You announce that you have cut a deal for $25 dollar bottles of insulin!!


Wow, CVS and NovoNordisk!!! You’re amazing and so kind and wonderful and great!

But are they really? If you read on, and you’re a person with knowledge of diabetes, the types of insulin that fall under this are Novolin R, Novlin N, and Novlin 70/30. That’s cool, right? Right??? Well, I give them credit for trying to help out. Walmart has had a similar plan for years on these insulins (or their equivalents). So if a person with diabetes really needed a bottle of insulin, they would be able to affordably get them. I give props for that!

The problem comes in when you look at these particular insulins. I used to take R & N (a different compay’s version, but the same thing). I stopped taking them 21 years ago. And I was behind the times when I did so. These insulins work. They will keep a person with diabetes alive, but they (I include 70/30 in this) are not a “best practice” insulin. They are outdated and do not work as well as newer insulins. It is more difficult to control blood sugars when you take these insulins. Keeping tight control, and making long term outcomes the most positive they can be, is nearly impossible on these insulins. I will note that some people use Novolin R, N & 70/30 and are heathly and well. It is just NOT the norm.

I’ve heard from friends in “the know” that this is a start. A foot-in-the-door, so to speak. That is wonderful. But don’t be fooled. It isn’t wonderful. It IS better than nothing. It is a start. It WILL help some people. And if I were to lose my health insurance, I could use these insulins in a pinch to keep myself alive.

No person should have to decrease their quality of life, or their ability to easily (as easily as can be with diabetes) treat their diabetes. I know CVS and NovoNordisk can do better. I challenge them to do so. So from me to them, a pat on the back for a good start. Now keep going.

Saturday, February 25, 2017

Dreaming of Infusion Sites

The past couple of days my new insulin pump infusion site has been sore. It was like that when I put it in, but I'm stubborn. I don't like to change it unless I see blood, or my blood sugars get crazy. I didn't have my CGMS in (I was planning on putting one on this morning), so I didn't have a totally solid look on my blood sugars, but I was testing regularly with no major issues.

Last night I had a dream that someone was pulling on my insulin pump tubing, pulling my infusion site. It was weird, but I've had similar dreams before. I woke up, tested my blood sugar (I was in the low 200s), gave a bolus and went back to sleep. I woke up this morning and my blood sugar was STILL high, even higher than before. I knew something was wrong.

I looked down at my infusion site and it was full of blood. Yay. Really, really, really bad site. Maybe that pulling on my tubing wasn't a dream after all. I pulled the site and then proceeded to bleed through 3 tissues and a Band-Aid. When I finally got the bleeding to stop, I did a new infusion site and a sensor.

It sucks, because I am waiting for my blood sugar to come down so that I can eat breakfast (I'm starving). But it could be worse. I have a new site, a new sensor, I'm feeling okay (other than thirsty and dry mouth). At least it did get any worse before I caught it, so I still have my Saturday ahead of me! I've got things to do!

Sunday, February 19, 2017

A Weight Off My Shoulders

I'm currently planning my vacation this summer. This will be the first vacation since being diagnosed with celiac disease. I'm still learning what life is like with celiac. Some days it seems easy. Other days, it is more frustrating than you can possibly imagine.

Learning how to eat out in my town, learning how to shop again, learning how to cook again... it is all part of this new life I'm living.

Something I haven't done yet is take a vacation. Traveling outside my comfort zone. Thinking about it makes want to cry a little, even though I know that many people travel with no problems or issues.
This summer I am planning on attending the Children With Diabetes Friends For Life conference in Orlando. This will be my second year attending. Last year, it was such an amazing experience, I knew I wanted to go again.

This year is different. I go back with celiac disease AND diabetes. Because celiac is so common in people with diabetes and their family members, Friends for Life always has separate food for those with the "yellow" bracelets (green means diabetes, orange means family, yellow means celiac). They cater to this because it is a need.

This eases my mind so very much. Knowing that there will be food available and I won't have to ask questions or worry.... that is an amazing weight off my shoulders.

On top of that, this year's conference is being held at a Disney resort. Disney has a reputation for catering to those with dietary restrictions, including people with allergies or celiac. This is even better because the meals not provided by the conference will probably be at the resort or a close Disney related place. This is another weight off my shoulders.

Does it mean I can let my guard down? Not really. But it means a bit less worry when I ask for gluten-free. I did do a bit of research on gluten-free and celiac safe foods at Disney. It was nice to have even more reassurance that I will be able to eat something other than salad and gluten-free granola bars. Nearly every place at Disney parks, Disney resorts, and Disney Springs has gluten-free options, and even some completely gluten-free places. The best part? Dole Whip is gluten-free.

These are simple things that make me happy. Sometimes, you just have to look at the good side of things, and appreciate the little things to get through the day. In the meantime, I'm looking forward to another summer of friends, and understanding.

Thursday, January 19, 2017

Health Care & Politics

This is what a pre-existing condition looks like.
It's no secret that the ACA (Affordable Care Act) is under extreme pressure right now. It is on the verge of being completely dismantled by our government. Replacement is still hazy, with no real plan being announced for something to take the place of ACA at this time.

I'm doing my best to keep up with what's happening on this front, but things are happening so quickly right now that it is difficult at best. I'm aware that ACA is not a perfect system. There are issues that need to be addressed, including rising health care premiums and deductibles that are breaking the pocketbooks of many Americans.

That being said, I'd like to point out a few things that ACA (Affordable Care Act) has done that are positive. So no matter what side of the ACA fight you're on, I think we can all agree on the fact that we want the best coverage we can get, and it needs to be financially affordable for all Americans. If the ACA is overturned, let's hold our lawmakers accountable to make sure that certain protections are kept in place. If the ACA is kept, and "fixed," let's hold our lawmakers accountable to make sure that everyone can afford good health care coverage.
Some things that the ACA has done:

1.) Children are allowed to stay on their parents' insurance until they are 26 years old, giving them time to complete a decent education and establish themselves before taking over this costs themselves.
2.) No insurance company can deny health insurance to a person based on a pre-existing condition (I have 3 of those!).
3.) A person's health insurance premium is not based on their gender (it used to be) or their health conditions (same thing). Pre-ACA a woman was charged more than a man for health insurance. And if you were lucky enough to get health insurance with a pre-existing condition, you could be charged way more for your premium.
4.) There are no longer annual and lifetime caps on what an insurance company will pay out for a patient. Pre-ACA, an insurance policy could limit the dollar amount they would pay out in a year, or even in a lifetime. Someone with a chronic illness or traumatic event could max these out and be stuck paying the difference.
5.) Preventive care is now free. This means your yearly check up with your doctor is free to you. This just makes sense. Regular health checkups mean less illness. Less illness means less cost to the insurer and to the patient.
6.) Birth control is free to women. Let's think this out: Pregnancy is expensive for patients and insurers. If you offer free birth control, there are less unplanned pregnancies, meaning less cost to insurers and patients. Less unplanned pregnancies also mean less abortions, and I think everyone can agree that is a good thing.

These are all positive, GOOD things that came along with the Affordable Care Act. We need to keep these things (among others) if we are to have a strong, healthy society. So no matter how we get there, by fixing the ACA, or repealing and replacing it with something better, we need to be sure that we keep these things in whatever legislation is used.

So, don't hesitate to contact your lawmakers. There are websites that even make it easy, like DPAC (Diabetes Patient Advocacy Coalition). Or you can visit usa.gov to find out who your elected officials are and contact them yourself, by phone, email, fax, or set up an appointment to meet with them in person.

This shouldn't be about Democrats or Republicans. This shouldn't be about taking a side, or who you voted for. This is about making sure that everyone has access to affordable healthcare. That isn't partisan. That's just kindness. Diabetes and Celiac don't discriminate. Many other pre-existing conditions don't discriminate. They can affect anyone at anytime. So that means this issue affects us all.

Saturday, January 14, 2017

Ignorance is Bliss

One of the things that annoys all of us PWD is when the general populations perpetuates diabetes myths. It has been something that we have been fighting since the day we (or our loved one) was diagnosed with diabetes.

We deal with people telling us to eat cinnamon, run 10 miles a day, stop eating bread, etc and then your diabetes will go away. We deal with people saying that diabetes happens because someone is overweight or ate too much sugar (both of which are untrue for both Type 1 and Type 2 diabetes).
Sometimes it seems like a constant battle.

Celiac has been in my world for only a couple of months. I spend most of my time trying to figure out what I'm doing, if I'm eating the right thing, and what the best gluten-free food are. It didn't really occur to me that I would step into advocacy for celiac by accident. But it happened.

Last weekend I was at Whole Foods (a store, prior to my celiac diagnosis, I had only been in a couple of times). It was crowded and busy, as most places are on Saturday afternoon. There I was, standing in the gluten-free mixes/flours isle trying to decide which of them I was going to try.

An older lady came up to an employee standing nearby to ask where she could find waffle mix. The employee turned around and came near me and grabbed a box of waffle mix and handed it to the lady. She immediately and quite loudly stated, "I don't want this gluten-free stuff. This whole gluten-free thing has gotten out of hand."

I probably would have let it go. I can agree that so many people are going gluten-free for a variety of reason, not all of them medical. But the older lady didn't stop there. She kept on about how everyone has something and everyone wants to have something just to be different and it is ridiculous.
I couldn't stop myself. I said, "Until it happens to you."

She then proceeded to tell me that everyone thinks their kid has autism when they just want an excuse to say something is wrong and that it is the same way for people who don't eat gluten. Then she said, "Unless you have a medical diagnosis, you aren't sick."

I kept my mouth shut. What I really wanted to do was punch her, but I'm a non-confrontational person and I didn't relish the though of getting arrested in the middle of Whole Foods on a Saturday. It would have really thrown a wrench in my plans.

At first, I was mad. Then I was thinking of all the things I should have said to her, but didn't. Then I realized, this is just like the diabetes myths I've been trying to bust for years. Now it's a whole new disease, and new myths.

Strangely enough, I almost envy that hateful old lady from Whole Foods. She has obviously been blessed to never had a major illness strike anyone in her family. It is where her ignorance stems from. And in that case, ignorance is bliss. I truly hope she never has to have a loved one deal with an auto-immune disease.