Lost Sleep

The thing I hate more than anything is loosing sleep. I'm a sleeper. I always have been. I took naps way longer than most kids and I had to be dragged out of bed most mornings.

I like to get my 8 hours plus. I can also sleep almost anywhere.

Put me in a car? I'm asleep in 10 minutes or so. A plane? I'm usually asleep before they get to drink orders.

This is not unusual for me. The only time I ever worried about sleep was when I was not making it through the day at work, without going to my car to take a nap. While that's another story, it lead to my Celiac diagnosis, and I'm back to just regularly sleeping a lot.

Diabetes is a sleep stealer. A full on stealer of sleep. With current diabetes technology, the wonderful world of Constant Glucose Monitoring, we are give the security of closer diabetes monitoring. We are given the benefits of knowing what out blood sugar is all of the time. It is a beautiful and wonderful technology, but it also has it's downsides.

There are alarms. All the time. You're too high, you're too low. You're rising quickly or falling quickly. Your sensor has lost communication with your device. During the day, these are great. You hear it, you give a quick adjustment and hopefully fall back into your range again. During the night, these alarms can be lifesaving. An alarm that wakes me from a low, could potentially save me from hospitalization or even death.

But these alarms, when they wake me at night, also keep me awake. Sometimes they go off multiple times during the night, making sleep broken and interrupted. Other times, it wakes me and I can't go back to sleep. This is what has been happening more often lately.

I miss sleep. I miss uninterrupted sleep. I miss it so much. It makes my days hard sometimes. It makes my nights restless. Diabetes is a sleep stealer.

My options are limited. I could turn off my sensor at night, but lose the safety of knowing if I drop too low or go too high. It's something that I've considered. But I'm not sure I'm ready to do this for now.

Thankfully, technology is improving. There are options out there to help regulate your blood sugar levels, without as much human decision making.  But until I get that technology, uninterrupted sleep is a nice idea, but not always possible.

One Year

One year ago today, my life changed. That evening, I prepared for my endoscopy to confirm my diagnosis of Celiac Disease. In doing that, I ate my last meal that included gluten. It was a dinner from a restaurant. My mom had come down to be with me for the procedure, so we ordered out and brought it home to eat.

Life changed a year ago. I knew it was coming. I'd gotten a chance to "last chance" much of the gluten-y items I loved so much. I prepared. But until it actually happened, until I actually went gluten-free, I didn't understand everything. Sometimes I still don't. 

A lot in my life has changed since a year ago today. I've eaten gluten on accident a couple of times. I've learned about this new world of Celiac advocacy. I've become active locally in the gluten-free support group in Nashville. I've tried to learn to cook again.

I've had actual nightmares that I accidently ate gluten and when I realized it, I debated on continuing to eat the food. (This is a reoccurring dream for me!) I've gotten so excited when I saw something on the shelf in the store, only to instantly remember I can no longer eat that item.

I've stumbled through grocery store trips, and tried to stand up for myself in restaurants. I've learned that, much like diabetes, "gluten-free" has stigmas. I've nearly cried when I wanted something I can no longer eat. I've nearly cried when I found a suitable gluten-free substitute.

This marks the first full year of my gluten-free life. Diabetes is normal for me. Celiac isn't. Yet. I'm getting there. One day at a time. I'll get better at it. It will be second nature for me, just like diabetes is. It won't be easy all the time (neither is diabetes), but it will be my "normal."

Year one is in the books. On to the rest of my life.

I Will Always Defend My Friends

Last week I had an interesting thing happen. I drive for a ride-share company in my spare time. It's a good way for me to save up for things I want to do, when most of my "regular" income goes to bills and day to day expenses. One evening, I picked up a lady. We started to chat and during our chat, I mentioned that I was currently driving to save up to attend Friends for Life this summer.

I shared with her that I had diabetes since I was a child and that I loved getting together with other people who lived with diabetes. One of the best parts of spending time with those with diabetes is having people around you who "get it."

As we neared her destination, she told me that she had Type 2 diabetes. That she had been diagnosed a couple of years ago, but that she didn't share it with anyone because of the stigma behind diabetes. Essentially the "you caused it" attitude that follows those with diabetes, especially Type 2. I was able to share with her about the D-OC, and gave her the #DSMA chat information for twitter. I hope that she takes some time to get out there. To understand that there are those out there who "get it."

What I took from this conversation was her fear. Her general shame about having diabetes. While I didn't get the impression she felt like the diabetes was her fault, it was apparent that she knew other people thought it was her fault. Full disclosure, this woman was not obese.

Then, yesterday, Mick Mulvaney, director of the Office of Management and Budget (a White House role) made an absurd statement while speaking at Stanford University. He spoke about having a safety net for people who get cancer, but then stated "That doesn't mean we should take care of the person who sits at home, east poorly and gets diabetes."

WTF.

This is by no means the first time I've disagreed with a politician. I do that on a regular basis and have for most of my life. But this is a direct attack on people that I love. I WILL NOT sit by and idly watch while someone in a huge position of power spreads misinformation about diabetes. I WILL NOT sit by and let some people (even those in our own community) say, "well I have T1. I didn't do anything to get that."

I have T1 diabetes. I have had this auto-immune disease for over 31 years of my life. I have friends with T2 diabetes. Many of them, in fact. Guess what? They didn't do anything to get T2 either. While it doesn't have the same auto-immune components that T1 has, studies have shown, time and time again, that there are genetic components to T2 diabetes. Proof of this is people that are not obese who get T2 all the time. Also, those who are obsess and never develop the disease. While lifestyle choices CAN play a role in the development of T2 diabetes, it is by no means the only component.

Misinformation is continually spread about diabetes, but I refuse to not speak up when I hear something. This is no different. The truth of the matter is that "some groups have a higher risk for developing type 2 diabetes than others. Type 2 diabetes is more common in African Americans, Latinos, Native Americans, and Asian Americans/Pacific Islanders, as well as the aged population."

Poverty has also been shown to play a role in the increases rates of Type 2 diabetes. A study in Canada even showed that the chances double or triple of developing Type 2 diabetes if the income is less than $15,000 per year.

So what does this mean to me? This means that misinformation being spread by people about diabetes is really an attack on the poor and minorities. It isn't funny to joke about getting diabetes when you eat something sweet. It isn't kind or true when someone suggests that lifestyle is the only factor for those diagnosed with ANY type of diabetes.

We're all in this together. Don't let the bullying continue. Don't let our friends be attacked. No one asks for diabetes. Some people win the genetic lotto and here we are because of it. We ALL deserve health insurance. We deserve to have access to affordable health care. And even IF lifestyle were the only contributing factor to developing Type 2, those people would STILL deserve affordable accessible health care. No one should be ashamed of their health diagnosis and I'm going to continue to speak out until no one else tells me they don't share their diabetes diagnosis for fear of judgement.

The American Diabetes Association released a statement today, regarding Mr. Mulvaney's statement. They said it well, and I share it here:

On behalf of the nearly 30 million Americans living with diabetes, the American Diabetes Association is extremely disappointed by the misinformed statement of Mick Mulvaney, director of the White House Office of Management and Budget, as reported by the Washington Examiner. Mr. Mulvaney's comments perpetuate the stigma that one chooses to have diabetes based on his/her lifestyle. We are also deeply troubled by his assertion that access to health care should be rationed or denied to anyone.
All of the scientific evidence indicates that diabetes develops from a diverse set of risk factors, genetics being a primary cause. People with diabetes need access to affordable health care in order to effectively manage their disease and prevent dangerous and costly complications. Nobody should be denied coverage or charged more based on their health status.
We are saddened by Mr. Mulvaney's comments, and we look forward to working closely with the White House and the Department of Health and Human Services to dispel the erroneous stigma around diabetes and the millions of Americans living with this disease.

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.

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.

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!

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.

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.

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.