So let's talk about Diabetes

About two months ago, my pump warranty expired. No big deal, right? Wrong. In fact, it's a very big deal. This means that if something that happens to my pump, I go without my basic control over my diabetes. Sure, I could go to injections. But, it's nothing I have ever been good at. I have a fight with my body without the constant flow of insulin. I go high when I shouldn't go high and low when my math is terrible. Worse yet, I can't feel it when it's happening.

Let's touch on that. Before the ACA, I could not afford insulin. My first pump and CGM costed me about $1600 out of pocket. That does not include more than three months supplies, much less test strips, insulin, glucose tabs, batteries, meter, lancets, doctors, blood work, or anything else diabetes related. The list goes on AND on. So, God bless Obama Care. Fight with me if you want, I will argue my point until I die of old age, or much worse, complications of diabetes. But, I digress.

I, along with my health care professional team, have been fighting with insurance for two months now. It was all looking very bleak. We have received not one, but TWO, denials about how I shouldn't be provided with a new pump, partially covered by health insurance, because I was not hypoglycemic enough. Let's review:

Hypoglycemia, according to Mayo. Yes. The last complication could mean DEATH. So, you're telling me, my life needs to be at stake in order for you to provide the tools that could prevent that? Okay. Thank you.

Yesterday, after months of many blood glucose tests, my basal being increased more than it ever has been, many treatments, and lots of blood work, I received a letter that said: "After reviewing your case, we determined the initial first two denials will be overturned."

HALLELUJAH! We have started on the process. What will this mean? Well, it may take a little bit. But, we have started.

This morning, at six forty five, I awoke and I felt weird. I decided I was fine, but I may as well check. I grabbed my meter. 55 mg/dl. That's LOOOOW. I'm supposed to stay between 100 and 120, ideally, as decided by my care team. I could barely feel this. What if, it happened in the middle of the night? While I was driving? While I was working? I could die. From one instance. There would be nothing I could do to prevent it. Tell me, again, how this is my fault.

In a very controversial year, I am facing the possibility of a president repealing the ACA. It's not perfect, I get that. But, it's something. Had this happened four years ago, I may have been fine because I have the most amazing support system any person with, or without, diabetes could ever ask for. The thing is, I'm luckier than most. Not every one is.

Today, we started the process of getting me a new pump and CGM. Today, I shelled out $206 for my insulin, covering my prescription deductible for the year. This is is the LATEST in the past four years I have made it. Usually it is done by April 1. Since I have been fourteen (I was diagnosed at 27,) I have worked at least two jobs. In the past six months, I have been fortunate enough to not have to do so for the first time in my life. And I am STILL struggling to cover my disease. I pray that in ten years, the system will be better. But, we can't afford to give a health care system, that makes everyone eligible , up.

I recognize that I still have luxuries that not every one has. I was able to pay for my insulin. And I know I will be able to save for my pump and CGM and make that happen, too. What happens to the 20 year old that can't? Okay, they can stay on their parents insurance until 26. What happens to the 27 year old, who is freshly diagnosed with an auto-immune disease, who doesn't have a support system?

I'm so thankful. I just want to make sure that whatever happens, it keeps getting better. I don't want to look back on my children, or my nieces and nephews (whichever comes first) and wish they didn't have to worry about the decision between paying out of a pocket to save their lives, or deciding to pay their rent.

These are major issues this year. And I am facing them on a day to day basis. I have had to be on the phone over one hundred twenty hours in the past two months to my insurance company, my doctors, and my distributor. I know I said that I have been blessed with only one job in the past six months. But, this...this has felt like my second job.

Keep your fingers crossed for me. And every one else faced with this insidious disease.

If Everyone Loved and Nobody Lied

It's the season. The season where people eat too much, drink too much, and get together with their friends and loved ones. We often reflect on the year and talk about what was good, and how to improve on what was bad. We post pictures on social media of our kids having a wonderful time decorating cookies, our holiday celebrations, our animals dressed up as reindeer and wearing funny costumes, and hilarious memes about what the holiday season REALLY means. It can be warm and fun, stressful and scary, hopeful and joyous, or exciting and great expectations. Sometimes, it's all of these.

There's been a lot of talk lately about how people get offended on everything on the internet. There is always someone who you can offend by anything you post. I'm not offended. I'm not angry. I'm thoughtful and curious, though. I've seen this meme a few times in the past couple of days, posted by various friends:

Again, I'm not offended. Let me tell you why. Before July of 2011, I knew NOTHING about diabetes. I thought I did. But, I didn't. I thought it was about overeating, lack of exercise, poking your finger, giving yourself shots, and not being able to eat sweets. Man, it would be cool if this was true. I wish it was. I know what you're thinking: “It's not cancer. You can get through this and manage and take care of yourself and CONTROL it. It won't kill you.” Again, man, it would be cool if this was true.

Holidays are the hardest time a year for me. Really, it goes much deeper than diabetes. But, that's for private discussion. Every year, I get together with my loved ones and we overeat and over laugh (if there is such a thing) and reflect on the year. Every year, we sit down at the table and EVERYONE digs in. Everyone, but me. I sit and I look at the table and decide what is worth the insulin and what is not. I don't care if I use more for a holiday meal than I would for a weekday breakfast. After I calculate, I check my blood sugar (sometimes my diabadass comes out and I do both at the same time.) Then, I insert the carbs I'm about to put in my body. It's never right. I usually go back for seconds, or decide I am too full and cannot finish. So inevitably, I go high or low. I feel like crap about an hour after eating. It's okay, because it's only one season. I don't get mad at the people not waiting for me to do all these things, because, like me before July 2011, they have no idea. I'm seated at their table and they don't think about it, because they don't have to. AND THAT'S OKAY.

Holidays are hard because I go through more insulin and then treat and then sleep and then wake up. But there's a chance it could go bad EVERY YEAR. I could die in my sleep, or go into diabetic-ketoacidosis. I could do the same thing every day and use restraint at meal times and my diabetes could still decide what it wants to do. But, because it's not a beast that can be tamed, and it's a crazy stressful time of year, I don't get to decide. I didn't choose diabetes: it chose me. While I love the people and opportunities I have had, it's still not easy, especially this time of year.

As for a time of reflection. This year, I joined advocacy like I never have. I went to MasterLab 2015  in July, courtesy of Medtronic Diabetes. There, I met the amazing Kristen Ewing and Phyllis Kaplan and MY GOD SO MANY OTHERS. In October, I joined The Betes Organization and became a patient ambassador. We are working on an AMAZING project to educate health professionals on the stigma of Mental Health and how long term diseases (much like Diabetes) often go hand in hand with psychological problems. Look for more, soon, although you have already seen some from me. I had knee surgery in March and maintained great blood glucose levels through it all, completed physical therapy with a gold star, and have slowly been able to start exercising again, which is an amazing feeling. My A1C is great according to my doctor and good for me-although (I know many of you don't know this) I am a perfectionist.

So why did I bring up the meme, and the holiday table, and the reflection? Because I want you to know that diabetes isn't coming for you because you had too many holiday get togethers with food. Diabetes isn't coming for you because you made poor decisions. If Diabetes decides to come for you, it will. There are many types of Diabetes, but it doesn't matter. We are fighting something together. And none of us did it to ourselves. We couldn't decide to get it or to avoid it. And it would be mixed emotions for all of us if we never got it because we would not have the knowledge, or the friends, or the experiences, or the fight to live without it. But life would be a lot less risky and lot less expensive if we didn't, that's for sure.

Here's what I am asking you:

Part 1: please stop posting these memes. Whether it's the one about overindulging like I posted before or about a mathematical problem with candy bars, where the main subject ends up with diabetes in the end, or it's Wilford Brimley and his crazy mustache saying I'm going to give you diabeetus, just don't.

Part 2: If you personally know a diabetic, no matter the type: give them a hug and say you're proud of them. Wait until they test and bolus before you eat, even if you're the only one at the table that does. Smile at them and know they are thriving, even if it is the hardest time of the year. They need that support from you. They can eat what they want this time and THEY SHOULD. They are enjoying themselves, much like you are. Know this before you ask the if they should eat that.

Part 3: If you want education, or just have a simple question, I am always here. Please feel free. If I cannot answer it, I am blessed to know a team of professional doctors and long term, well-educated, diabetics that are always ready to listen and help.

I refuse to be offended any more about this. It doesn't do me any good, and it doesn't do you any good. The only thing I can do is try and help spread awareness and education. That's what 2015 was about for me. And it can only get better from here.

Happy Holidays. And a VERY MERRY NEW YEAR.

I was not paid to write this article or promote any companies. I was not approached or encouraged to put these words on the internet. All thoughts are my own. And, for that, I'm proud. 

I Wrote the Gospel on Giving Up

I hate Fallout Boy, so forgive me this one time for quoting them. I always use a song lyric on the title of my blogs, and unfortunately this one was the most appropriate.

Years ago, when some days feel like yesterday, I wanted to give up on my life. It was a hard one. People would tell me, "some have it so much worse than you! Be thankful for what you have!" (Which is horrible advice to give to any one struggling, by the way.) But I struggled ALL THE DAMN TIME. It was hard to believe I could make it out alive. Luckily, even when my mental health didn't stick in there, my body did.

Tonight, I hosted DSMA on Twitter. And it was incredible. I wanted to focus on things that reflected National Suicide Prevention Week, that took place just last week. But, I didn't want to be bleak. I feel like some have talked about mental health and diabetes for years, but MANY have been discussing it as a problem as of late. Thanks to my attendance to MasterLab this past July, I realized I wasn't alone. And, I wanted to highlight to others that they weren't either.

You see, for many years, even before my 2011 LADA diagnosis, I wanted to give up and throw in the towel. While, at many attempts at my life, and many people telling me it wasn't worth it, I just couldn't take the depression. I cannot say that diabetes has made life easier. It hasn't. It affects my wallet, my emotions, and my every day struggles with diet and exercise. I know I have privileges where many do not. I recognize I have had some things come relatively easy for me. Mental health and diabetes has not been some of them. I don't regret most things. I think I've got a pretty good reality on what is going on in my life, TODAY. But there are some days, where I wonder. I wonder what I could do better. What I should be doing. What I can do tomorrow. That's the difficult part.

But, here's the deal. Diabetes threatened my ego. The depression and agoraphobia I had leading up to my diagnosis told me "You cannot do this. You SHOULD give up." For whatever reason, it made me stronger. Maybe I needed a kick in the pants. Maybe, I needed a doctor to look at me and say, "Do this or DIE."  Maybe I needed something to focus on, other than my mental health. Maybe I needed to be panicked about making car payments, rent payments, AND taking care of my physical and mental health. Whatever it was, Diabetes helped me kick my life into gear.

I started working out and making better choices about what I eat. (I'm not saying I don't indulge. I do. But now it's not every meal because, if it was, it would cost me a fortune.) I started looking at myself and realizing I really could make a difference to the lives I touched. I made friends that I would never know without diabetes. I began to advocate for something SO much bigger than me. I began to love my life and knowing that, if I didn't, no one else would.

That was the point I tried to make at DSMA tonight.

Maybe, I didn't get it across. Maybe I did.

All I know is that I learned so much from so many people. I pray I helped them, too.

A few years ago, I realized that I have so many supporters in my life. They come in all different lights. Some have no health problems. Some have diabetes. Some have so much more than that. Some have cried on my shoulder. Many, have let me cried on theirs. I'm lucky to have the people in my life. I'm lucky to have the support I have.

I want to extend that to the people who need it.

We can lean on each other. When you are falling, I want to catch you. When you are crying, I want to reach out and tell you I am here. When you are burning out, I want to put out your fire.

A very important supportive person in my life told me just recently: "I don't do these things because I feel obligated. I don't. I do these things because I know I can. And I know that, when you can, you will."

I've faced the rough patches. And I could again. But, for now, I am strong. And I am so happy to know all of you. Thanks for making my first moderation of DSMA amazing.

On the Road Again

So, this is my first blog post in a while. I've been slightly unmotivated, mostly because of diabetes burnout. In March, I had knee surgery to repair a meniscus tear. I was only supposed to be on crutches for two weeks, so imagine my surprise when I awoke to find out they had to put micro-fractures in my patella to make the healing process easier. With all the stress of that, diabetes seemed like an impossible feat to face.

I went times without checking my blood glucose because I couldn't bring myself to do it. Exercise was impossible being immobile, with the exception of physical therapy, which was incredibly limited with one leg. I'm naturally an extrovert and I work as a bartender so I was on the couch for almost six weeks, spending a good deal of time by myself. Diabetes was put on the back burner.

As I started to heal, and my knee felt better, I started incorporating little diabetes regimens back into my every day. I got back on my pump after being on shots for about a month. Then I started checking my blood sugar again. Diet is back under control (I say that after I had pizza tonight, but every one gets a cheat, right!?) And now, I can exercise again. I missed the elliptical and swimming so much. It feels good to be back to (almost) normal.

Well, a few weeks ago, I saw a contest to win a trip to MasterLab: a diabetes conference in Orlando, FL. I never thought submitting what I submitted would win. You see, MasterLab is hosted by The Diabetes Hands Foundation and Medtronic, my insulin pump therapy pump provider, offered a chance to win a trip to go. To my shock, on Wednesday, I was called and said they were honored to invite me to attend. 

I WAS ELATED. I was excited, and nervous, and frenzied, and honored, and had a MILLION emotions going on at once. I rushed to make sure I could get out of both my office job and working at the bar. To my delight, I was fully supported by employers and coworkers alike.

Next step? Tell my loved ones. They were thrilled and amazing. My mom (being my mom) was maybe the most excited and proud, followed closely my siblings, my best friends, and boyfriend. 

So, I sit here, on the eve of my flight to sunny Orlando, with my blog up and running, and stoked to be apart of this very special experience.

I get to see diabetic friends I haven't seen in years. I get to meet people I've talked to online since my diagnosis on July 23, 2011. Even better? I am going to make new friends. I will talk to the folks at Medtronic and the Diabetes Hands Foundation. I am so lucky to be a part of this.

Now, the only trouble I'm facing, is if I will even be able to sleep tonight.

Look for pictures, tweets, Facebook posts, and blog posts. It's going to be an amazing few days!!!

*Medtronic nor Diabetes Hands Foundation paid me to write this post. All of these thoughts are my own.

People Are Strange, When You're a Stranger

Blanche DuBois, from A Streetcar Named Desire, said, "Whoever you are, I have always depended on the kindness of strangers."

I believe this to ring true for all of us at some point in our lives, but even more so for me tonight.

I decided to go to a movie by myself. My friends all already had plans, were working or had a soccer game. It was a last minute decision and there are a few movies I have been wanting to see, so why not? It's something I do on occasion. It's nice to just pick a movie and go; not worrying about what any one else wants to see or what time to go, it's a pretty great getaway when you just need some time to do something by yourself.

Long story short, I got pretty sick last weekend. I was put on a liquid diet for one week. I'm on day two and it hasn't been fun. So far, I have been tempted by pizza, french fries, chocolate cake and movie theater popcorn. But, for the sake of my health and feeling better, I have been sticking with it thus far.

You can imagine what this has done for my blood sugars. Mostly, they have been within perfect range. Today, I ran from 80-123 every time I checked. 80 is a little low for me, but not enough to do anything. Well, since I had a meeting right after work and then went to a movie, I didn't eat. Usually, this would be an okay decision for me. I could normally make it through a couple hours and not feel anything. Unfortunately, between the liquid diet and it being four hours since I had last ate something, I started feeling really week half way through the movie.

I noticed it when I realized I was sweating. Suddenly, my face felt numb, my arms felt like jello and my legs and hands were trembling. I didn't know what to do. I reached into my bag for my meter and glucose tabs. Meter reading: 38. Glucose tablet case: empty. Shit.

I started to get up thinking I could go run to the snack bar and get some Sprite or juice. But fell right back down. Panic set in-yet I was too confused to realize what I should do.

I looked to my right and a gentleman in his early seventies or so was getting up. He moved to the seat next to me. "Are you alright?" He looked worried. I had definitely frightened him. I explained to him I was a diabetic and experiencing a low blood sugar. Without hesitation, he stood right up and said, "I'll be right back."

In minutes, the gentleman was back. In his hands, he had a small drink and some gummy bears. He had already put the straw in the drink and handed it to me. Then, he sat right down next to me and started opening the candy. I told him, "I'm on a liquid diet. I can't eat those. Thank you so much, though."

He started laughing. "These are for me. You're greedy." I laughed too.

Shortly after I drank half of the Sprite, he nudged me. "Check again before you finish that." I was astonished. I checked. 115. Perfect.

"If it's alright with you, I'm just going to sit here next to you. Movie is almost over any way." He smiled at me.  "It's nice to sit next to a pretty young lady." I felt better, both physically and emotionally.

The movie ended. The lights went up. "By the way. My name is Roy. My late wife was diabetic. A type 1. And I have a granddaughter who is a type 1. Sorry if I made you worry."

"Roy, I'm Charli. You didn't make me worry. You're my hero!"

"Well, I don't know about that. We're strangers. But I'm glad I could help.Take care of yourself"

We went our separate ways. We didn't exchange information.We just said goodbye. And I can't thank him enough.

I pride myself on my independence. I think it's cool that I can go shopping, go out to eat, go to the park, and go to movies by myself. I love that I have the confidence that some people don't to do these things. But, I am also so thankful for the people around me. I can't deny that I need help some times. And I definitely can't thank some of these people enough.But I can try.

To Roy: Thank You.

That's What I'm Rollin' With

I was asked the other day, "If you were better, would your diabetes not be so bad?"

It's hard to answer this question. Mostly because "better" can mean anything in this. I know what she meant by this question was, "I see your pump and you using it. Maybe you wouldn't have to if you did better."

I explained to her (very calmly I might add) that it's not about something I did to myself. I heard those words coming out of my mouth and realize how far I've come in the past three years. It's amazing to me, really, that I had the same notions of what diabetes was. I thought it was all one big disease, separated only by Type 1 and Type 2-and the only distinction being is when you were diagnosed and if you took insulin. I had prejudices against people who had diabetes-even though I knew both Type 1's and Type 2's in my family. I never took the time to learn because I wasn't forced to.

But, still, her question got me thinking.

I recalled a conversation I had my first night at diabetic camp. Someone called me a "good diabetic." My response? There's no such thing as good and bad in this case. We just have to be as good as we can that moment. And, just like everything else in life, there are weak moments with how you react to things and how you take care of yourself. I have both-in diabetes and other times in my life.

I want to announce these things I do well and the ones I do badly. I want other PWD (People With Diabetes) to know they aren't alone in their struggles and triumphs. I want to know that I'm not alone in these things. So, maybe with these proclamations, I can do better. I can see better. And I can relate better. Because isn't that we are trying to do any way?

The Good 

• I check my blood sugar before every meal. And I bolus EVERY time. 
• I try and exercise when I can and am up to it. Although it usually takes forms in Team Sports.
• I pay attention to how I feel and don't discount it.
• I stopped with the regular soda and I keep certain things that I know will mess with my blood sugars for special occasions. (Rice, Beer, Pizza, to list a few.)
• I change my site every three days and I only put enough insulin in my pump for the allotted time.
• I stay up-to-date on advances in technology so I know what's coming.
• I am trying to be a test subject for a few diabetes related studies that will help advance us.
• I do not get short or angry with people when they ask questions. In fact, I WELCOME THEM! I love educating on what I know. And I refer to my trusty DOC handbook (Twitter and FB mostly for lightening speed answers,) WebMd, MayoClinic, and/or my team of Medical Specialists when I do not have the answer.
• I keep my pump on unless I am going in water or doing extreme activities-and then I take caution for how long I will have it off.
• I wash my hands before I check my blood sugar so I can get the best reading.
• I make better choices with food than I ever have before. (Not always the best, but definitely an improvement from five years ago.)
• I check my feet daily to look for any signs of cuts, scrapes, or infections.
• I don't drive when I'm having a low episodes.
• I watch my weight and my a1c and keep them within normal ranges that my doctors have suggested.

The Bad

• I rarely check my BG two hours after I eat when my pump tells me. Unless I'm going to eat again or I feel "funny"
• I really like to treat with candy when I'm low. I'm sick of Glucose tabs-except grape and green apple-both which I can rarely find. I should try juice boxes. But I NEVER think to buy them.
• I over treat some times. If I could explain to you how low blood sugar feels, and you could feel it with me, I don't think any one could blame for this. It doesn't happen all the time, but when it does, WHOA.
• I never use alcohol pads to clean my skin before a site change. I have boxes upon boxes upon boxes of them. Just don't use them.
• I can't tell you the last time I've changed my lancets-in any of my devices.
• I don't always remember to cover my site with the little round disc thingy when I go swimming. I'm sure during the summer I get a healthy does of chlorine, lake and river water. (This is when I use the alcohol pads.)
• I always forget to keep track of my three days when I'm supposed to change my site so OCCASIONALLY I don't remember to pack supplies or insulin to work. Luckily, I only live four minutes away,
• I only upload my pump into my doctors system (so he can see the numbers) about twice a month. And it's very inconsistent.
• I listen to the DOC often before I listen to anyone else. Maybe it's not all bad. they are the ones with the experiences and the knowledge!
• I forget to schedule more time to blog because I get busy with other stuff and I don't always have access to a computer. 
• I drink. And sometimes more than two when I do. 
• I love French Fries and cupcakes and ice cream and anything with carbohydrates.
• I wear flip flops. And heels. And I got barefoot. One of these every day.
• I make excuses when I do bad stuff. ^ See all of the above.

The UGLY

• I make jokes about how some day I'll have dementia. Or die from complications of diabetes. People don't take them well.
• I've treated a low blood sugar with a beer. It was a test more than anything. But probably not my best decision I've ever made.
• I don't wear my CGM. I hate it. It's scary and leaves scars that are far beyond the physical ones. I got a different company one from a friend who had a spare. I am going to try it out, but I have to get the supplies for it.And I have to wait until I have insurance for it. I haven't even taken it out of the box yet because of various reasons.
• I have lost touch with a lot of the DOC. I forget about DSMA a lot. I am rarely on twitter. And I'm just not up-to-date like I used to be. Life threw me some curve balls and I've lost touch.
• I haven't been to a convention or conference in over a year now. I hate it. Again, curve balls.

It's not all pink ponies and fields of daisies. But, it's not all chainsaws and tragedies either.I do what I can, when I can. And I try to forgive myself when I can't. I pray for people to be more understanding, and hopefully I can teach a little on the way. 

In the mean time, I can be at peace with my successes and my flaws. 

Dream a Little Dream

As long as I can remember, I have had the most vivid dreams. It started very little as nightmares or dreams of being a princess where my night in shining armor would come rescue me. Then, I moved on to other ideas of how life should be. At the age of eight, I read that Steven King (who I actually was reading at the time) wrote his terrifying thrillers and horrors from dreams he has had and taken notes on. I have a kept a journal bedside since I was eleven to record some of the chilling ones that would keep me awake if I didn’t get them out of my head. I have written short stories on the really horrifying ones, and the people who have read them always had goose bumps before they put them down. Talking on the phone to my Grandma a little over a year ago, she asked, “Are you still having those horrible night mares? It was impossible to keep you in bed as a child, let alone get you down!”

I have always been able to do things in dreams that people claim to be impossible. I can see my hands. I can change between first person and third person. I can remember them. I have died tragically in dreams. I have watched above at my own funeral. I have talked to loved ones who have passed away and felt comfort from them wiping my tears. I have slept walk and found myself in some peculiar places: on top of the kitchen table, with food all around me and the table set has been one of my favorites. I have jumped on clouds and spoken to angels. I have flown. I have saved the world and destroyed it. I have been chased, and chased back. And I have been in war jumping in an out of trenches.

About seven months ago, the night mares stopped! It has been wonderful. I have the strangest dreams, but they aren’t scary nor do they leave me with horrible anxiety. They make me wonder if I took drugs the night before without knowing it.

Last night was a first. I’ve only been diagnosed with diabetes for almost three years. As type two originally, then LADA. I’ve been a pump user for one year, six months and some odd days. And diabetes has yet to enter my dream world, until last night.

I was just walking through a park, with my meter case in hand, when my pump started going off. “Dangerously Low Reservoir” it said. (It never truly displays that.) Within a minute later, “Warning! Low Blood BG.” I stop to check and my meter says 41. I look for glucose tabs in my meter case, but of course they aren’t there. My pump starts vibrating again. “You’re High! You’re High!”

“What is going on with my pump!” I think. It never talks like this!

“Just kidding.” It reads.

I laugh out loud. Then, one more display.

“You’re going to be okay.”

I woke up and was a little anxious. I was high most of the day. But my pump wasn’t yelling at me. I did have to change my site today, but not because my pump told me, “Dangerously Low Reservoir.”

My pump is of course a part of my every day life. But it never has appeared in my dreams. And I’ve never had a conversation with it before. This was a first.

I’m intrigued to find out when it’s going to make it’s next appearance in my dream world.