Wednesday, December 7, 2016

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.

Tuesday, November 15, 2016

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.

Wednesday, November 9, 2016

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.

Wednesday, October 19, 2016

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.

Wednesday, September 21, 2016

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.

Tuesday, September 20, 2016

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…..

Sunday, July 31, 2016

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.