Twice as hard. Just as normal.

Normal: conforming to the standard or the common type; usual; not abnormal; regular; natural.

Today I want to talk about the idea of normality. Our society has ingrained in us what a sense of normalcy should look like. Now, I consider myself to be a pretty normal person, most of the time. But what I find "normal" does not fit in society's definition of the word. 

I am an advocate for myself and for others who are just like me. I advocate for people with diabetes. I advocate for people with eating disorders. I advocate for mental health. I stand up for what I believe in at all costs. 

Yesterday at work, a co-worker asked me what it was like to always sway from what is normal. "Go to hell" is what I wanted to say, but instead I made her sit and listen to the answer I had for that question. 

As a diabetic, I have to take especially good care of my self. I have to check my blood sugar a dozen times a day in order to achieve optimal health. In order to prevent complications from diabetes in the future. In order to keep myself alive. Am I always perfect at it? Abso-fucking-lutely not. I'm human. I get things wrong. I allow myself room to make mistakes. But every time I do something beneficial to my health I don't contemplate if it is normal. It's my normal and I'm okay with that. 

NORMALLY, my blog is mostly about diabetes. But I want to throw in some talk about eating disorders today. Because talking about eating disorders makes people uncomfortable. Because talking about mental health makes people uncomfortable. Because for a very long time I was extremely uncomfortable talking about it. I was scared to be labeled and, more importantly, I was scared of not being "normal".

As a person recovering from an eating disorder, I slip up sometimes. Again, I'm not always perfect but I'm trying and that has to count for something. This post isn't really about me, though. It's about other people struggling. You're not alone. You are normal. Or maybe you aren't. And that's okay. You don't have to be normal, whatever that may mean. You just have to be the best you that you can be. You have to keep trying. You have to perpetuate truths and take a stand to end stigmas. These are some of my favorite quotes about not feeling like you have to conform to societal norms: 

"There's a notion I'd like to see buried: the ordinary person. Ridiculous. There is no ordinary person."-Alan Moore

"The normal is that which nobody quite is. If you listen to seemingly dull people very closely, you'll see that they're all mad in different and interesting ways, and are merely struggling to hide it."-Robert Anton Wilson

"Normal is how you perceive normal, not what others tell you is normal."-Sean Thomas

So there you have it, folks. Perception. It's all in how you look at it. It is subjective. So to all those people out there with eating disorders, don't feel discouraged about not being normal. You are just as normal as anyone else. You have to work twice as hard to be just as normal as someone without an eating disorder. You have to work twice as hard to be just as normal as someone with a fully functioning pancreas. In my opinion, that extra work gives me all the normalcy I need. I do it every day. It's my normal. 

Twice as hard. Just as normal. 

MiniMed 530G with Enlite

Medtronic recently released a new system for PWD. The system is called MiniMed 530G with Enlite. The biggest improvement in this upgrade is the threshold suspend feature. That is, the pump will automatically suspend insulin delivery for 2 hours if your blood sugar (via the sensor readings) goes below a certain number. The new sensor with this pump is supposed to be more accurate, smaller, and easier to insert.

I love Medtronic and am extremely pleased with their products overall so I decided to start their new system. I worked closely with my endo, CDE and medtronic rep to get the ball rolling on this new pump. I've been on it for about two weeks now and I thought it would be nice to share my thoughts about it.

DISCLAIMER: EVERYTHING I'M ABOUT TO SHARE ARE MY OWN OPINIONS AND THOUGHTS. I AM NOT BEING PAID, NOR DID MEDTRONIC ASK ME TO POST ABOUT THIS. I AM DOING IT ALL ON MY OWN. 

The things I like about this system:

• Not much changed as far as how to work the pump is concerned. I didn't have to learn a lot about working the actual pump itself because its pretty much the same. 
• The threshold suspend feature is amazing. 
• I love that I have the option to either let my pump suspend or restart the basal. You are not required to have the pump suspended for two hours. That was my biggest concern.
• I LOVE LOVE LOVE the message that pops up on the screen when the pump goes into threshold suspend mode. It says something like "I have diabetes, call for emergency assistance. To clear ESC then ACT." That's freaking amazing. Since the pump will alert nonstop, it is likely that someone will be able to help/get help for a person that is unresponsive and wearing this pump. Seriously, amazing.
• The accuracy has been improved quite a bit.
• The sensor is FDA approved for 6 days instead of 3.

Things I don't like about this system:

• While the accuracy has improved tremendously, its still not what I want it to be. It took about four hours after the initial calibration for the sensor values to be even remotely close to my meter readings. That's a bummer.
• The cannula for the senor is smaller (not as long), which is a plus, but kind of annoying. It's so much easier for me to sit the wrong way or move in the wrong direction and the sensor will fall right out. They're way too expensive to be wasted.
• The insertion process is a bit of a hassle and the insertion device looks like some sort of robot contraption-like  machine. It's weird, dude,

All in all, I am very pleased. I am looking forward to all the things Medtronic will offer in the future and I am extremely grateful for the technological advances that are poking their heads out at all of us, making diabetes that much more manageable every day. 

Power in Numbers

You never know how much your actions affect the lives of others. I always try to treat others the way I want to be treated. With that being said, I have great news. 

A couple of posts back I told you all that on the day of my diaversary (diabetes anniversary) I met another diabetic. I gave her all my contact info and told her to never hesitate to get in touch with me if she ever needed to. That was in the beginning of June. Fast forward to three days ago...

This past Sunday was my first day in, literally, 2 months to sit down and relax. So I checked my personal email account (which is the email address that I gave to the fellow diabetic back in June). I had a bunch of junk emails from clothing stores because all I do is shop but there was one email with a subject line that said "I could really use some help". It was from the 16 year old diabetic that I met months ago. Here's the email that she sent me. Word for word. 

"Hey Shannon,

Not sure if you remember me but we met at the bowling alley on Brady street not too long ago. I'm 16 and diabetic and you told me to contact you if I needed anything. And right now I just need some support. I'm trying my hardest to keep my blood sugars in order but it seems that my best is never good enough. I went to my first endo appointment since my diagnosis and my a1c was 9.9. When I was diagnosed it was 10.2. My doctor is working with me and my insurance company to put me on the pump. Animas Ping, is that what you have? I don't know why I'm so upset about this right now. Maybe I just needed to vent a little. I checked myself before I started typing this. I was 409. I really do want to give up. How do you deal with disease on a daily basis? I try and talk to my parents about all this but they don't really understand so I feel like they're just pitying me and that's annoying. It would be better if I could talk to someone that lives with this daily. I understand if you don't want to help a complete stranger but I would love if you responded. 

Peace be with you,

Lauren "

I was astonished. And shocked. And grateful. And angry. And sad. I wanted to take away her pain, this complete stranger, and give her happiness of some sort but I knew that all I could do was tell her the truth. 

My response: Lauren, thank you for reaching out to me. I'm so happy you found the courage to ask for help. First off, I use a Medtronic pump but I could give you plenty of contact info for animas users. You asked me how I do this every day and the truth is, I do it by talking to people like you. I find comfort in knowing that I'm not alone. I reach out to others. I try not to hold in my anger. I cut myself some slack when I see a bad number on my meter. I keep reminding myself that these numbers do not define who I am by any means. I take deep breaths when I'm ready to give up. I keep pushing myself.I let myself have bad days. I cry. I laugh. I surround myself with people I love. I try to appreciate the little things in life. I change basals. I correct highs and treat lows. I get paranoid. I work hard and I make sure I'm doing my best. It sounds to me like you're doing all that you can. Keep contacting me. Keep trying your best. You may not always have perfect numbers but knowing you're not alone makes things easier. Lauren, do not keep beating yourself up over this. There's no easy way out of diabetes. You just have to live life with a few extra precautionary measures. Just remember that you can do this. I am always, always here for you. Show diabetes who the real boss is!

Much love,

Shannon

Her response to my email was very short. She simply said " At some point in reading your email I had this gut feeling that everything will be okay. Thank you Shannon." 

The DOC has power in numbers. We're all in this together. Always remember that.

Running makes me....better?

I've never really had many mental heath issues. I mean, as a kid I struggled with big feet problems. My feet were bigger than all the other kids' feet and everybody knew it. But I was a kid. So really, that wasn't even a huge problem. Sure I got sad and dealt with my emotions the best way I knew how which always ended being okay. I was okay.

I've always been pretty fit. I ran track and cross country all throughout high school and I stayed active in college. I've never been lazy (at least that's what I tell myself) and my health has always been extremely important to me.

I was diagnosed with diabetes when I was 18 years old. For the most part, I've done everything I can to keep my numbers under control. I went through a period of utter hatred for this disease and myself for having it and the world was lucky if I checked my blood once a day, but it was a short period. Maybe two months. 

For four years, I've been figuring out ways to keep my numbers in check as well as still being able to do what I love without diabetes interfering. But here's the thing. DIABETES IS AN INTERFERENCE. Yes, I can absolutely have a cupcake even though I have diabetes. No, I can not do so without bolusing for this little piece of shit every single time. See, I can do everything that people without diabetes can do, but I'm always thinking about diabetes in the process. 

When I was 20, I had a terrible time with dawn phenomenon. My basal rates for the hours of midnight until 8am were 3.65 units an hour. Believe me when I say it was TERRIBLE. But I discovered that running the night before made me wake up on the lower side of the 80 range. We slowly lowered my basal rates until it was all "normal" again. And for 2, almost 3, years I have been taking a 1 mile run every night. 

Not the worst thing in the world, right? Keep reading. Lately, no matter what I do or eat or think about, I can not get rid of these midnight highs. About three weeks ago was when I noticed that I needed help. I woke up at 6am and my blood sugar was 200 and something. For breakfast I had a bowl of air and water and bolused 5 units for it. Why? Because I was pissed off and sick of diabetes. I went for a run before work. At 8 am, 355. I told my boss I was sick. I left work. Went for another run and bolused 5 units for another bowl of air + correction for the 355, 9 units in total. I took a nap after my run and at noon I was three hundred and something stupid.  I went for another run because I knew that running brought my  blood sugars down and if I just kept running eventually they would just land safely. Wrong. 

I have been working closely with my therapist and my endo to try and get my numbers under better control. I've gone through a shit load of insulin in the past month or two and it is doing its fair share of damage to my mind, my pockets, and my parents pockets. But in the mean time, I'm struggling to see the light at the end of the tunnel. Hell, I'm struggling to see that I'm even in a tunnel. Is this what I'm going to deal with for the rest of my life? Raggedy highs? I can't tell you how thankful I am after seeing a 50 on my meter. There have been a couple of days where all the numbers that I see are pleasing, and I'm grateful for that. And all the rest of the days?

Well, I'll just keep telling myself that no matter how many runs I take in a day...no matter how much I think I'll run away from diabetes...I'll still see a 200 or a 300 or a 400 and I need to bolus and move on. I've seen far too many nights where I've ran so many times in one day that I literally can't feel my feet and I'm so out of breath and exhausted that I just want to sleep on my kitchen floor. It's cold and comfy there, ya know?

Seriously, I'm learning to appreciate mental health. It's a serious deal. Diabetes is tough but diabetics are tougher.

And I'm movin' on.

Happy Diaversary

Okay so June 1st was my diaversary and I completely forgot. May 31st was my brother's wedding so I was super busy with all kinds of, I don't know, wedding stuff. I probably checked my blood sugar twice that day. I'm a bad diabetic. Whatever, sue me. I got home around 1 am and I literally passed out within five minutes. But let's get to June 1st.

I woke up at 8 and had breakfast with my mom. We went to see a play that my god son was in at noon then parted ways. I took my god son bowling because he "just needs to go bowling right now." He's 5. Yes, 5.While we were at the bowling alley, I met another diabetic. She was 16 and had just been diagnosed with type 1 three weeks ago. She was there with her younger brother who was 6 so we let them bowl together but separately if that makes any sense. They had a competition to see who could get the most "numbers" at the end of the game. While they played, we talked. She expressed that she was scared and that she hated needles. She had been checking her blood sugar regularly like the doctor told her to and logging her numbers. Her a1c at diagnosis was 14 point something. So I explained to her that diabetes is hard and never gets easier but it gets better. You get used to it. I told her that I was still scared to go to the doctor and that the 5 second count down on the meter seems like an eternity. But I wanted her to know that she can do this! I told her to go to the You Can Do This Project and to think about becoming a part of the DOC. I gave her the web address to my blog. I reminded her that she is never alone. I gave her my phone number and email address and told her to feel free to contact me if she ever doubted herself or if she had any questions regarding anything diabetes. I don't normally give out my personal information to strangers but it felt right. She needed a friend, a diabetic friend. I felt like I should be that for her. So I did it. We hugged. I reminded her that everything would be okay and to stay strong. And with that, my god son and I left the bowling alley. He asked if he could sleep over and I couldn't resist bonding time with my favorite little kid. We went out to dinner and back to my house for a Spongebob marathon. It was the perfect day.

The next morning I drove him home before I went to work and I went on with my normal routine.

Fast forward to today. June 9th. I realized that I had missed my diaversary. I looked at my calendar and thought back on the things I did that day. And I smiled. I had no idea that I met another diabetic on the same day I was diagnosed but I was glad I did. I was able to help out a fellow diabetic that was in the exact same position I was in 4 years ago. That day was also a good day blood sugar wise. I stayed within my target range and I didn't battle with any nasty lows, although I woke up with a 69.

Seriously, how awesome is that?! Today I was reminded why I should never give up and that there is light at the end of the tunnel. Diabetes does not always leave you alone and in the darkness. You find people that are just like you and you remember to smile. I know I'm smiling right now. I'm glad I met that young lady. I hope she finds her way and reaches out if she ever needs help.

Here's to four years of diabetes!

Just a little bit

"Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?"

This is day 2 of Diabetes Blog Week. I am supposed to be petitioning.

My petition: I want diabetes to listen to the loved ones of diabetics and then have a change of heart. I want diabetes to totally understand that it's exhausting and a hassle to deal with even for people that don't have diabetes that care for diabetics/Type 3's. So I had my mom write a letter to diabetes asking it to leave us alone. Have I ever mentioned that my mom is awesome? Because she is. And so she writes.

Hey there, diabetes! 
I'm sure you know me very well. You've been with my daughter for almost 4 years now. You're sort of like a stalker. You never go away. I want to eliminate you from her life but I know you aren't willing to do that. That's okay, I'm reasonable. Can we compromise? Could you just leave her alone for a bit? Give her a few days free of your shackles. You came to her as a senior in high school. She was about to graduate. Her future was so bright and you stopped her in her tracks. Oh but make no mistake, her future is still bright. I just watched her, my youngest child, graduate from college. Yet and still, I see her struggle. Like I said, you came to her right before she left for college. To be exact, 2 months before college. As a mother, I would do anything to make sure all three of my children are safe and happy. So you can understand why I was so uptight about diabetes and where her numbers were at all times. I woke up in the middle of the night to check her sugar. I know that she was 18 but I wanted to be assured that she was okay while she slept. I didn't want her to worry. I know she did anyway but it made me feel better. Was I obsessive? Absolutely. But who wouldn't be? Oh yeah, I only did this for 2 months. After that, she had to leave for school. I felt helpless. I could do nothing to help her because she was far away, learning to experience the world on her own. I'm proud of her. Do you know how much stress you cause? Were you aware that 7 months after her diagnosis she had a seizure because her blood sugar was dangerously low? Did you forget that 1 month after that first seizure DKA hit her like a ton of bricks? She spent 4 days in the hospital. We didn't forget any of this. It lives with me, with my child. Along with the constant worry that comes with the math and carb counting and insulin and whatever, my daughter has long periods of depression because of you. I applaud her for her hard work. She never quits trying. Anyway, she deals with you and your antics. I'm just asking you to give her a short break. I'm asking you to leave her alone for 5 weeks or 5 days or 5 hours or 5 minutes. I want her to live to her fullest without dragging you around. Please, for me and all the other family and friends of diabetics, go away. Do this especially for my daughter. She needs peace of mind for some time. So tell me, diabetes. Would you be willing to break up with my child just for a little bit? I'm begging you.

Love, Momma D

So there's my petition. Give me a break because Momma D said so.

P.S. I realize it is technically Wednesday. Don't judge. :)

Listen to me, please.

I'm participating in Diabetes Blog Week! This Is today's topic:

"Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?"

If my medical team read this post I'd say this...

Listen to me, please. I am so grateful for you and all of your staff. You guys are very helpful when it comes to me make decisions that I have a hard time making. Listen, you make having diabetes somewhat easier to live with. I want you to know that I am trying my very best. I'm not perfect but then again, is anyone? I want you to know that I breathe diabetes. I think about diabetes when I'm awake and when I'm asleep. There are not very many things that I do without factoring diabetes into the question. Listen to me. When my blood sugar is high, I get angry. I never want you to be disappointed in me. Goodness, I'm deathly afraid of disappointing you. I want to share with you that there aren't very many things that would ever make me change endos. Our 15 minutes together. THEY ARE CRUCIAL. I listen to you for fifteen minutes and I replay your words in my head for the next 3 months. I am always hopeful that you have something to praise me for. I just want your approval. I don't need it, but it sure does help me get through the days until I see you again. 

Oh, but listen to me please. There are things that I don't want to share with you. I don't want you to know how much I stress. You'd think I was crazy. But I'm not...entirely. I'm sane. I promise. But if only you knew how much I try to make myself believe that my A1C doesn't matter. Really, don't listen to this part. I'm sharing but you should know that I don't want you to know this. I don't want you to know that I leave my sensor on until its absolutely inaccurate. I hope you never find out that if I KNOW that I'm low, I won't check until I think the number is safe. Again, I want you to praise me. But what I want you to know the most is...I really hope you know that I'm putting in so much effort.