Study Subject

Something that has always been a big fear of mine regarding my diabetes, and potential complications, has been loosing my vision. I think this is a common fear for those of us with diabetes, since the first things we hear about are going blind, loosing limbs, and our kidneys failing.

Around 10 years ago, my yearly visits at the eye doctor began to show the signs of diabetes in my eyes. They were small, but there. At first, it was devastating for me. There was nothing to be done.
Over time, the spots disappeared and then came back again and never left. There was no change to my vision, and literally nothing that I could do, other than do my best to control my blood sugars and hope that my eyes held steady without getting worse.

See, when you have diabetes, your blood sugars are not normal all the time. This causes issues with your eyes because the blood sugars can make your eyes think that there need to be more, new vessels in them. So they begin to develop. The problem is, these vessels aren't supposed to be there so their weak and can leak and bleed. The bleeding causes vision loss, and at that point, it is typically treated with injections of medication and laser surgery.

I had those vessels and spots in my eyes, but they weren't bleeding. Yet. Back in the summer of 2017, I had a scheduled eye appointment with my eye doctor, and while I was waiting on him, I noticed a sign on the back of the door advertising a study for those with Diabetic Macular Edema (the term for the leaky vessels and spots) but no bleeding. When the doctor came in, we talked about my eyes, and without me bringing it up, he suggested I might be a good candidate for the study.

Ultimately, the study involved an existing medication that is used to treat bleeding in the eyes. It is injected into the eye, and they wanted to see if the medication could be used BEFORE the bleeding began, to help hold off, or improve the state of the leaky vessels and spots in the eyes. Before the vision damage and the laser surgery.

They gave me some information on the study (okay, a TON of information on the study), and I took it home to think about it and to pray. Ultimately I decided to give it a try. There was no guarantee I would even qualify for the study, so it couldn't hurt to try.

The initial visit involved a LOT. It was around 6 hours of tests (vision tests, pregnancy tests, blood pressure, medical history, EKG, medical history, pictures of my eyes, etc). The doctor was only interested in submitting my left eye (the eye with the most damage) to the study, but they were through and did everything for both eyes just in case.

This ultimately turned out to be a good thing. My left eye was rejected by the study as having too much damage. On a whim, they submitted my right eye and the study accepted it! What this meant was that I was going to be part of a double blind study. Meaning my doctor and myself would not know if I was getting the medication or not. Only the doctor who would give me the injections and the study coordinator would be aware.

 

I was concerned about my left eye, as it was showing more damage, but I found out that the company had allowed the doctor to actually treat my left eye with the medication for SURE, no blind study at all. This was amazing for me and I was more than happy.

Fast forward a bit over a year, I'm still in the study. This study is two years long, so I still have until next summer. I have gone to the eye doctor anywhere from every three weeks to every eight weeks. Each time I go, there are pictures involved. Sometimes there are blood draws. Sometimes there is dye injected (not into my eyes, but to help take pictures of my eyes).

Each time, I get an injection in my study eye (the right eye). For a while, I also received an injection in my left eye that I know has the medication. After several visits, my eye doctor (the one who does not know if I am getting the medication in my study eye), stopped me from getting the injections in my left eye because the eye looked so much better. I went from November to May with no injection in my non-study eye. I had one more injection in that eye and have not had another since.

 

I'll say that I've seen the pictures of both my eyes. My left eye (non-study eye) that I know has been getting medication looks amazing. The spots and leaky vessels that were there before are nearly gone. There are a few tiny spots here and there, but the leaky vessel spot that had caused me so much worry is now gone. What remains are the outlines of where the blood was and some small white spots that my eye doctor has told me are like scar tissue. In my study eye, the spots that were there have diminished greatly, though I can't be 100% sure that I'm getting the medication in that eye. I will say that the "before" and "after" pictures and comparing to the improvement in my non-study eye, I can assume that I am.

I'm doing this study for selfish and non-selfish reasons. Selfish, because I want the latest medicine. I want to keep my vision. I want to avoid laser surgery. Non-Selfish because I have too many friends with diabetes who have vision problems, have dealt with laser surgery and vision loss because of diabetes. And maybe if there had been an option like this, they would have had a different story. Maybe it will help the others out there who aren't to the point of vision damage yet.

I still have a little over a year left in this study. My hope is that my eyes will have improved so much that there isn't much else to do. I always said I wanted to be part of a diabetes study, but this was NEVER what I imagined. Let's be honest, I was thinking new technology! This, however, has been an amazing experience so far. Sure, injections in ones eyes aren't joyful, but they aren't nearly as bad as I imagined, and the benefits outweigh everything else.

I'll Still Use the Nima Sensor

There were new reports today from Gluten Free Watchdog regarding the Nima gluten sensor. Third party testing released from Nima showed that the gluten sensor is wrong much of the time.

There were false positives (times when the sensor showed gluten, when it was actually at 20 parts per million or less) about 8% of the time. This is an issue because you may think that something isn't safe to eat, when in fact it is. Twenty parts per million (or 20 ppm) or less is safe, per the FDA and medical research, for a person with Celiac disease.

There were false negatives (times when the test showed negative, when in fact it wasn't) about 20% of the time, with nearing 100% accuracy only when the levels of gluten neared 40 ppm. This is an issue because you may think something is safe, when in fact it isn't.

These things tend to scare people. In fact, they scare me a bit, but I still have the Nima sensor, and I plan to continue to use it. Here's why:

I feel like this technology is promising. It's a start. It isn't perfect. Even if it WAS perfect, 100% of the time, the piece of food you test could be fine, but three inches over on your plate could be something that was cross contaminated.

My hope is that this technology will improve. That it will inspire other companies to come up with similar (better, faster, cheaper) products. My hope is that it will one day be considered a medical device, complete with FDA approval and that insurance will cover it. 

For me, having a sensor that gets it 

right some of the time is better than 

not knowing all of the time.

I'm still fairly new to the Celiac game. It's scary, and my tests keep coming back in ways I'm not thrilled with (a.k.a. I feel like I'm not getting better). Add to that the fact that I have zero symptoms when I ingest gluten, and I'm flying blind. 

For me, having a sensor that gets it right some of the time is better than not knowing all of the time.  So for now, I'll continue to pay out of pocket for this technology. I'll take the risk. It's worth it for me.

Everything starts somewhere. With diabetes, insulin pumps used to be the size of a backpack. Blood sugar meters were large, inaccurate and took forever to come back with a reading. Constant glucose  monitoring systems were inaccurate, and painful. Technology improved. I want to believe that will happen with Celiac technology as well.

How Do You Educate the Educated?

One of the things that comes up too often in our diabetes community would be the number of those we loose to undiagnosed diabetes. Too often, adults and children are lost because a doctor misdiagnoses Type 1 diabetes as the flu, or a parent or the undiagnosed adult, assumes it is the flu and doesn't seek medical care. We can't stop those who don't seek medical care, but when a medical professional misdiagnoses Type 1 as the flu, people often die.

I know it's like beating a dead horse (a terrible saying we have in the South), but we always put forth suggestions (including a blood glucose test for anyone presenting flu symptoms) and I'm not sure anything ever actually happens. I know we'd all love to see these changes. And perhaps it will happen. How do we educate those who are educated to diagnose Type 1 diabetes?

As I've also been thrown head first into the whole Celiac world, I've found that medical professional negligence at diagnosis isn't relegated to Type 1 diabetes. I've discovered that it also happens to those with Celiac. While the death isn't as immediate for those with Celiac (if they are undiagnosed or incorrectly diagnosed), it can lead to years of suffering, other diseases, and death.

Some of the long-term health conditions are listed on celiac.org. Two of them are listed as iron deficiency anemia, and vitamin and mineral deficiencies, both of which I had a my time of diagnosis. These are the least of the issues, others include increased instances of cancer, early onset osteoporosis, central and peripheral nervous system disorders, etc.

According to Celiac.org, 1 in 100 people worldwide have Celiac disease. More than 40% of people with Celiac disease appear to have no symptoms at all (I count myself among that 40%, despite the fact that I had celiac related anemia, and I'm fairly certain my years of anxiety and depression were also closely linked to undiagnosed Celiac). Approximately two and a half million Americans have undiagnosed Celiac disease. This pdf file contains a quick guide to Celiac.

One of the first things that any respectable gastroenterologist will tell you is NOT to stop eating gluten if you think you might have Celiac disease. The Gluten Intolerance Group  states "Do I have celiac disease, non-celiac gluten sensitivity, or wheat allergy? Diagnosis is key to this knowing the answer to this question and being able to follow the diet that is right for you. This is also the most important reason not to start a gluten-free diet before being tested and getting a diagnosis."  

Yet, so many medical professionals (and well meaning friends, co-workers, family members) will say "stop eating gluten for a week and see how you feel." Or more professionally, advise their patients of a food elimination diet to see if a person has food sensitivities. I've only had Celiac disease (diagnosed) for seventeen months, and I've had at LEAST three people that have told me their doctor told them to stop eating gluten, and did not advise them to be tested for Celiac disease.

It happened again today. I was tagged in a post of someone I don't know by a friend. It was asking about my Nima sensor, and I responded. Then I read the original post. It was a mother who's child potentially has gluten and dairy issues. The doctor advised going gluten and dairy free for a while to see how the child feels. I do my best to hold it together, but I always have to step in. I tried to give some information, a few links of information, and really  tried to impress upon her to not remove gluten until being tested for celiac disease.

Here's the deal: If you have Celiac disease and aren't diagnosed, when you remove gluten you start to feel better. Yet you have to currently be consuming gluten to be tested for celiac disease. If you stop eating gluten you can never get an accurate and confirmed Celiac diagnosis unless you start to consume gluten, on a regular basis, for around six weeks before being tested. Who is going to  go back on gluten if they feel so much better without it?! Therefore, you don't get a diagnosis.

I can't state where it was that I got this information (I simply don't remember), but there was a gastroenterologist in the Europe who specialized in Celiac. When he came to the U.S. around 20 or so years ago, he was told to pick another specialty because "celiac is a European disease." This is information that was being taught in our medical schools up until fairly recently, if my information is correct. Due to this, medical professionals were taught about it, but that it was rare.

Celiac is not a food allergy. You can't diagnose it properly using food elimination methods, as you can so many food allergies. In my personal opinion, if a doctor thinks that gluten could be an issue, they should always test for Celiac. According to Gluten Intolerance Group, diagnosis for Celiac should start with a blood test (sound familiar DOC?) to test for tTG, EMA, and DGP antibodies. They also state "Because no one of these tests is ideal, panels are often used."   The follow up by saying that "if this screening suggests Celiac disease, a small intestine biopsy is the next step to confirming diagnosis." This can confirm damaged villi (the hallmark of celiac disease).

These are the exact steps my doctor used. I was screened by my general practitioner, the panel came back suggestion Celiac, she scheduled me an appointment with a gastroenterologist and TOLD ME TO CONTINUE TO EAT GLUTEN. I met with the gastroenterologist who scheduled my biopsy and TOLD ME TO CONTINUE TO EAT GLUTEN. There were six weeks between my positive blood screen and my biopsy. I had a strong feeling, based on my knowledge that 8 - 10% of those with Type 1 diabetes have Celiac, that I would have Celiac as well. I spent that six weeks eating all the things I knew I'd not get after my biopsy results came back.

I'm blessed. I had a good general practitioner that  listened to me and didn't brush off my symptoms (exhaustion for no reason). She suggested the Celiac screening and I'm glad she did. But not everyone is as blessed as me. What happens when your GP suggests you eliminate foods? Especially if you have gastrointestinal symptoms? The average person is going to listen. I probably would have. What happens then? You live a life on a gluten free diet that you will never know if you actually have Celiac Disease, a wheat allergy, a gluten sensitivity, or other related issues. You won't know which diet is best for you. And you won't know what follow-up care to get, what tests to have done, and what other issues to look for.

There are tons of stories floating around on the internet (and in gluten-free support groups all over the world) of people who were misdiagnosed, ignored, told to eliminate gluten without a proper diagnosis. I wondered to myself today, "Do doctors have to take continuing education classes?" I did some research. They do. My state of Tennessee requires 40 hours of continuing education classes every two years. Two of those hours are required, by state law, to be in controlled substance prescribing (opioid epidemic anyone?). There are no other requirements. I'm not sure what kind of continuing education that doctors take, but I wonder if there's a way to have some sort of requirement made regarding new and changing medicine. Maybe they all are. But how do we get out the word about the fact that Celiac is NOT just a "European disease" and that some people (40%) don't present with gastrointestinal symptoms?  How do we get out the word that the "flu" could be a deadly disease that will kill someone because it is actually Type 1 diabetes?

General practitioners don't have it easy. They have to be a jack-of-all-trades. They have to know a little about a lot. You can't catch everything. But I think we as a society (and as a medical community of caregivers, patients, and professionals) could do a better job about getting out the word about disease that can affect so many people, causing long term health complications, other health issues, and death. According to JDRF.org, about 1.25 million Americans are living with Type 1 diabetes. If my math is correct, this means there are actually more people living with Celiac disease than with Type 1 diabetes (I had no idea!).

Either way, we have two disease that can be diagnosed fairly easily (a simple blood test) and it often doesn't happen. A simple blood test that could save a life, and improve the health of so many others. What do we do to make this happen? Is it still beating a dead horse to ask the question again? How do we change these things? How do we educate those who are trained to diagnose illnesses? How do we educate the educated?

Celiac, Diabetes, and my Crazy Life

It's been a busy several months for me. I have a ton of stuff going on with work, and when I'm home, it seems like I'm always doing something. Not to mention the month of February was NOT my friend (for multiple reason). But here's to focusing on the positives.


First off, I've started on the MiniMed 670G! I got the pump back in January and started wearing it, and then got trained on the new sensors and auto mode just a couple of weeks ago. It has been a learning curve, but I will say this: I am sleeping more peacefully most nights. Almost no overnight alarms.

Day times are still a little rough, but I've been told it takes a while for the system to "learn" your body. And I have a couple of friends who are on the system and are in LOVE with it. They both have told me that once it learns you, it is so much easier. I'm crossing my fingers for that. I have great hope for this hybrid-closed loop system.

I had another blood draw/visit at my Celiac doctor to see how things were going. Truthfully, I don't know that I'm ever going to get used to the lack of immediate numbers in Celiac disease (more on that later). All of my blood tests are still positive, but the one that I get that has numbers does show a drastic drop (in a good way) of antibodies. It was previously 1:160. Recently it was 1:80. That's amazing, but still not less than 1:10, which is what the ultimate goal is. It isn't perfect, but it does make me feel like I'm on the right track.

I also attended the JDRF Middle Tennessee Type One Summit in January. I love that this is an event that happens every year. It's a chance to be around others like me. And it's a chance to learn some things. I always enjoy learning new things, and I truly appreciate the effort that JDRF Middle Tennessee does to make sessions for both families of those with children with diabetes, as well as adults with diabetes. It was the first time I hadn't done social media for the event in a few years, so it was kind of cool to sit through an entire session and not pop from one to another to try to document as much as possible. That said, I've always enjoyed doing social media for the event in the past as well.

I've been chatting with a friend about rebranding my blog, which is another huge thing happening around my world. Not sure if or when it's going to happen, but it's something that might happen. I'd like to find others with Celiac, others with Diabetes, and others with AND (there are so many people out there with multiple auto-immune diseases.

I also made a costly investment related to my Celiac, but I felt like it was something I needed to do. A company called Nima makes a sensor that can detect gluten in food. In other words, it's like a blood sugar meter for food. Down sides: It's takes several minutes, it's expensive, it isn't covered by insurance, and it only gives you a "gluten found" or a happy face if no gluten.

Each capsule to detect food (like test strips) is between $5-$7 and they are one time use capsules. Obviously, I can't use them on everything I eat, but they could come in handy when I'm suspicious or am eating somewhere new.

So far I have only used three capsules. One I messed up, one I found out that the food I've been eating a restaurant up the street isn't gluten free, and one I used at a place that wasn't on any of my apps and turns out their steak fajitas were safe.

I'm looking forward to seeing where this technology goes. Perhaps someday insurance will cover them, we'll be able to reuse capsules, and the technology will be quicker, smaller, etc. I feel like this may be what people felt like when the first blood sugar meters were coming out. I remember my meters from the mid 80s and they were crazy and took forever and took SO much blood.
I'll take it as a good step forward. I love it because with no gastrointestinal symptoms, I don't know when I'm getting glutened. This could help with that.

On that note, those with peanut allergies, Nima is releasing a similar system to detect peanuts. Who knows what's next!?

Here's to seeing what the next several months holds and seeing what life brings my way.

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.

Navigating without a Compass

We all know that living with diabetes isn't easy. There are ups and downs and rollercoasters and burnout and frustrations. We bond together and we get through. I've always lived with diabetes (at least it SEEMS like always). I found friends to help me through. I have good days and bad days, but overall, I understand diabetes.

I have limits, there are levels to count and numbers to interpret that tell me where I'm at on my diabetes journey. A1c, and carb counts and blood sugar numbers are all things that are there, sometimes instantly, to let me know how I'm doing. High number, give some more insulin. Low number, give some less insulin (and treat that low!). A1c, let me know over several months how I'm doing overall. I have a constant glucose monitor that I wear, almost all the time. It lets me know when I'm getting too high or low. I can seen trends and make changes based on those trends.

To me, diabetes is, for the most part, understandable. Maybe not predictable, but understandable.

Things like blood sugar meters and constant glucose monitors are my compass in my diabetes life. They help guide me.

Celiac is a totally different story for me. I was diagnosed, while having no obvious symptoms (aside from anemia). I have none of the gastrointestinal issues that many associate with celiac disease. Because of this, I feel like I'm leading my new, gluten-free life without a compass. I feel as if I have no way to tell if I'm doing what I'm supposed to be doing.


I've stopped eating gluten. I read labels. I replaced many of my kitchen items. I call restaurants to find out about gluten free items. I talk with wait staff. But due to my lack of symptoms, I have no idea if I'm actually consuming gluten, in unknown ways.

I don't have a number to guide me. I can't know that I'm going it right because I feel better....because other than sleeping better, nothing has really changed for me in the past four weeks.

I feel lost. Like I have no compass and I'm unsure which direction I'm going. I know I'm at least sort-of going in right direction. But I could be miles off an be completely unaware.

Thankfully, I have a great medial team, friends who support me (off line and online) and a family who loves me. I know it will (or I hope it will) get easier with time. But can someone please come up with a compass for me? A celiac compass? That would be great.

Life Goes On

Despite my celiac diagnosis, my life has to go on. So far, since I have gone gluten-free, I've only eaten out one time. Luckily, this restaurant had a gluten-free menu, so I didn't have to worry much about what I was going to eat.

Even finding things to eat in my house is sometimes difficult. I've already had a couple of nights where I have walked in my house and thought, "What the heck am I going to eat for dinner?!" I've been thinking about things like meal planning and left overs for lunches and stocking my pantry with non-gluten-y things.

Tomorrow, however, I head out for drinks with friends. To a restaurant that I have never been to and no nutritional information listed on the website. So I did it. I made "the call."
I had heard, from some online chatter, that this place has gluten-free hamburger buns. But I had questions regarding their waffle fries, and how their burgers are prepared.

I did all the things I've been told to do. I called around 3:30, when it is less busy. I asked to speak to a manager, who was very nice. I introduced myself and explained that I had celiac disease and was planning on coming to the establishment and that I had some questions. He was quite friendly and very knowledgeable. They do, in fact, have gluten free buns for their burgers. The waffle fries are out because they have a breaded onion and some breaded veggies that they fry in the same fryer. Mr. Manager answered a few other questions I had and I felt confident when I got off the phone with him.

Hopefully tomorrow will go smoothly and I will have no trouble with finding something I can have on the menu. As much as I HATE being the person who "bothers," I know I don't have a choice anymore. The choices I DO have are to stay at home and never eat out, or to do what has to be done to eat out without endangering my health. As much as I hate it, I WILL NOT let this disease (either disease) stop me from living my life.

It is going to make my life different. I'm going to be unsure and uncertain for a while. I'll mess up. I'll make mistakes. I'll learn new things. So even when my anxiety is at 1000% over what to eat and what to do, I'll keep on. I don't have another option. I won't stop living.

Today My World Changes

In spite of the title, this post is not about the election. Those thoughts, I will not post on my blog. Today was the day I finally had my biopsy via upper endoscopy, to medically confirm a diagnosis of celiac disease. I found out around two months ago, after bloodwork, that I most likely had celiac disease. Since that time, I've been learning as much as I can about celiac and what life will be like for me now.

Today, the procedure was short and sweet. I was under anesthesia, so I felt nothing. I woke up quickly. I was home quickly, and other than instructions not to drive for 24 hours, I am back to my normal self.

The BEST part about today was the fact that I have an amazing medical team. My new GI doctor is just starting up the Celiac clinic at the hospital/medical center that I have almost all of my doctors at. Another great thing is that the hospital/medical center that I use is a research hospital. One of the best in the nation. Sadly, it is VERY rare that this hospital has studies that focus on T1 diabetes. However, before my procedure today my GI doctor ask me if I wanted to be part of a study for celiac. I didn't even let her finish her sentence. I said yes.

I had to let her explain it to me, of course, but it was exciting, nonetheless. Basically, they just did one additional thing when they went in for my procedure. They are trying to find a way to check for celiac and healing of the small intestine without having to do a biopsy every time. That sounds AMAZING! They basically want to see if they can tell about healing from the density (how close together) the cells are. I don't know if it will work, but if I can help them find out, I am glad I did my part.

With my doctor's permission, I am starting my gluten free diet today, however, I'm going slow. I am going to learn to eat gluten free and slowly work my way up to worrying about cross contamination. Healing will start soon. I'll learn how to avoid cross contamination (to the best of my ability). And life will go on.

I have new goals and a new outlook on life. And that is okay.

Two Journeys

My life has been revolving around celiac lately. The only way I can explain it is that I am doing my best to learn as much as possible about celiac and the gluten-free diet as I can before I meet with the GI doctor and start the gluten-free diet.

That being said, diabetes hasn't gone away. It's still here. All the time. Being a total pain in the rear. BUT, I feel like I'm starting a new journey. For many years now, I've been blogging (although inconsistently) about all the things that I deal with in regards to diabetes. All the things that concern me about diabetes.

Now my journey involves living with and coping with TWO chronic illnesses. Both of them invisible, yet such a big part of my life.

Tomorrow is my first appointment with my new gastroenterologist and dietitian. I start a journey of a confirmed diagnosis, learning to live without gluten, and learning to pay even more attention to every morsel of food that enters my mouth.

I have had my pity parties. At least the "pre-gluten-free" pity parties. For now, I'm done. Now, I start the new journey. The new part of my life. It doesn't mean I'll never be sad again. It doesn't mean I won't have pity parties again (can anyone say "diabetes burnout?"). But it does mean that I am going to tackle this, like I have diabetes.

I'll do the best I can. I'll hate it. I'll love the things it brings into my life. I'll hate the things that are no longer a part of my life. I'll have good days and bad days. I'll sometimes be sick because of celiac. Just like I'm sometimes sick because of diabetes.

But just like diabetes had never stopped me, I don't intend on letting celiac stop me either. I'm already out there, online. I'm searching and making contact with others. Perhaps I'll find an online community like the D-OC. A community that will help me get through on the bad days, and will make me laugh and smile on the every day. I'll learn tips and tricks. I'll learn new ways to cook, and to bake (my secret passion) and maybe I'll share those so someone else out there, who has been newly diagnosed with celiac disease, will see that their life isn't over.

This blog has been diabetes for so long. It will still be diabetes, it just might be a bit more celiac for a while. And then one day I'll find the happy medium, and I'll share both sides of my story in equal parts, so others can share with me.

Fear in Food

When I was first diagnosed with diabetes, I was 4 years old. I was old enough to understand what sugar was and at that time, PWD avoided all refined sugar. I knew to say "I can't eat that," when offered a cookie or punch or something like a cupcake or candy bar.

Soon those around me adapted and life moved on. On top of that, we advanced in the world of diabetes and we learned to carb count and bolus and I could have refined sugar. For 30 years my life has been about what I put in my mouth, what my blood sugar is, and how much insulin to take.

But food hasn't really be a scary thing to me. I live and grew up in the South. Everything centers around food. Someone has a baby: bring food. Someone has a birthday: bake a cake. Someone dies: take food to the family. Someone celebrates a life milestone... you got it: food.

Even just having people over to play cards or monopoly involves food in the South. You have snacks out and drinks. It's part of being a good host or hostess. Basically, we gather, we eat.

Suddenly my life has become scary. Food is scary. Eating out with friends is scary. Having a party at work or friends over for game night just became scary. At first I thought to myself, "I will just have to eat at home more and make my own stuff." Not something I was thrilled about, but something that could be done, nonetheless.

But then, as a person who is proactive about their health does, I started reading on the internet and came across some sites that have me scared of my own home. My own kitchen. The place that I have always felt like I was good and decent and could bake up some love.

This site (to be honest, I got off the site after reading for a while and couldn't tell you what it was) recommended a complete ditching of basically everything in your kitchen. Including non-stick pots and pans and wooden utensils. It also recommended throwing out all condiments, deep cleaning your oven, and throwing all baking things (sugar, cornmeal, etc.) out as well and starting from scratch.
This terrifies me. Even my own kitchen isn't safe.

There is so much conflicting information out there on the internet. Some sites say to never eat at someone else's home. Some say to offer to help cook to be sure that food isn't cross contaminated. Some say, just talk with your host or hostess and explain. Which is true? Which is right?

There are the sites that say you should explain to your server when you eat out, IF you eat out. Some say you should insist on speaking with a manager or the chef directly. Some say to avoid eating out if at all possible. Then there's the fear of cross contamination of something as simple as a salad!! How?? Apparently if they mix a salad in the same bowl as a salad that had another dressing or croutons, there could be a chance for cross contamination.

Again, when do I stop being afraid of food? Currently, I'm still consuming gluten as I wait for my first appointment with the GI doctor, but I'm already slightly terrified of food. Is this what it's like to be diagnosed with diabetes as an adult?? For those of you who have been diagnosed with celiac, are you afraid of food? Are you afraid to eat food at other peoples' homes? Or out at a restaurant with friends? Does this fear go away?

Today is a scary and uncertain day. Tomorrow will be better. I hope. For now, I'm going to do my best to be brave in the face of this scary moment and scary life change and hope that things get easier as they go along.

The World Turned Upside Down

I’ve heard people talk about the shock of having been diagnosed with (or having a child diagnosed with) Type 1 diabetes. The anger, fear, insecurity, and uncertainty of being diagnosed with a lifelong illness can be a lot to deal with. Or so I’ve heard. I was diagnosed with Type 1 when I was 4 years old. I have some memories of my diagnosis, but overall, I remember very little about life before diabetes entered it.

Over the past 30 or so years, I’ve learned to live with diabetes. I know nothing else. I test, bolus, and count carbs like a champ (most of the time). Sure, there are up days and down days, but it’s my life. And it’s all I know. Anything different would be strange to me.

Back in the spring, I noticed I was getting unusually tired. The kind of tired that is abnormal, even for me (a girl who LOVES her sleep). When I went in for a regular check up with my PCP, I mentioned this and she tested me for anemia. I was pretty severely anemic. She prescribed three months of iron pills and vitamin C (it helps with iron absorption) and set up a follow up appointment for September.

I began to feel much better. Less tired for sure. I was convinced my iron levels had returned to normal, so when I went for my follow up appointment, my PCP shocked me when she suggested, strongly, that I be tested for celiac. Turns out that my iron was STILL low (though not as low as it was in the late spring). And my blood test came back positive for celiac.

And that’s when MY world turned upside down (I couldn't resist the Hamilton reference in the title). I always knew it was a possibility. After all, one auto-immune disease leads to another, right? I mean, we hope not, but the fact remains if you have one, the chance of another grow. I have fellow T1 friends with celiac. Friends who are D parents who have kids with celiac, and a friend from my childhood whose youngest son has celiac. It wasn’t a foreign term to me. But it was enough to know my world was not going to be the same. Ever.

According to all the official websites, celiac can’t be completely confirmed without a biopsy of the small intestine. I assume we’ll discuss that at my first gastroenterology appointment.  Also, I assume I’ll eventually be able to spell gastroenterology without spell-check, like I can spell endocrinologist.

For now, gluten is still in my diet. I’m awaiting instructions at my first gastroenterology appointment. I’m also trying to eat all the glutenous (is that a word?) things I can before they disappear from my diet forever.

When I found out about this a week ago today, I had a rough few days. But I am blessed with wonderful friends and family who are both giving me support, and encouraging me. My frame of mind is much better now, and the more research I do on celiac, the more things in my life (and health) I think could be attributed to celiac symptoms, that on their own meant nothing.

This is going to be a big learning curve. This is not going to be easy. My world is never going to be the same. But the thought of being healthy and happy and having energy give me so many things to look forward to.

I know someday I’m going to look back and say, “Life before celiac was normal? No, my life is normal now.” Just like life with Type 1 is my normal, sometime life with celiac will also be my normal. I’m scared. I’m hopeful. And I’m certainly going to be one that is going to need a ton of support. But if I know the D-OC, I know I’ll get the support I need and then some.

And this blog just suddenly became a diabetes AND celiac blog…..

Friends for Life 2016

For many years (at least most of the ones that I’ve been a part of the D-OC), I have heard about Children with Diabetes Friends for Life conference held each year in Orlando, Florida. So many of my best friends have gone, many times.

I made excuses. A couple of times I had legitimate vacations plans during the time of the conference. The rest of the time, my many trips to New York City seemed to financially trump my need to go to a diabetes conference in Florida. The cost scared me (or what I thought the cost would be).

A little over 2 years ago, my friend Becky asked me if I wanted to go to Friends for Life. It was too quick for me to get the money together to make the trip happen, so we decided to make this a goal to attend in 2016. The reason for the length of time was to save the money. The thing that made this the most awesome plan? Becky and I had never been in the same room before. And Becky is from England.

Becky and I “met” on twitter (like many of our fellow D-OC members) and then began reading each other’s blogs and became friends on facebook. We bonded, not just over diabetes, but our love of theatre. We began Skyping a few times a year and that’s how the trip to Friends for Life began to come together.

When the trip finally rolled around, it was something unlike anything I have ever experienced before. First of all, meeting Becky in person for the first time was so amazing. It was literally meeting an old friend.

Second, getting to see so many of my other D-OC friends, some of which I hadn’t seen in a few years, was a boost to my mental state. There’s nothing like seeing old friends.

But the most amazing thing was being in a place where there were literally HUNDEREDS of people who “get” what it’s like to live life with diabetes (or love someone who does). So many green bracelets symbolized those of us living with diabetes. Our loved ones wore orange. And everywhere I turned I didn’t feel the need to explain when I started to beep. Or needed to test. Or needed to treat. Or just generally felt like crap because my blood sugar was through the roof.

Meeting new friends was so much fun. I met my new friend Stephen for the first time ever when he stopped me in the convention hall to ask me if I was going to ever start blogging again. I’m ashamed to say, I hadn’t put two and two together to realize that this gentleman has been regularly commenting on my blog for years. I nearly cried. It has been so long since I blogged, and I often just thought no one missed my blog, or even remembered it. To have Stephen approach me was one of the best things that has ever happened to me (relating to my blog).

I met Phyllis and Kim and Sarah and Nia and Sue all for the first time. I saw old friends again and got to see my “twin” Karen and her lovely husband. I got hugs from Kelly and Kerri and Mike. I met Alanna. And among all of these people, I’m sure I’ve left someone out. I do apologize, but I can promise meeting you was a joy and truly touched my life.

When you live with diabetes, it seems like you’re constantly explaining yourself. And for a brief few days, at a conference in Orlando, there was no need to explain. That in itself was a beautiful and wonderful thing.