A few weeks ago something happened in my diabetes story and I completely forgot to share it!

I know that other diabetics will understand what I am saying when I say, that you include certain people or certain details in your diabetes story when you tell it to someone for the first time. I don’t mean your diagnosis story, I mean your diabetes story. When you have a meaningful conversation with someone about the disease and how it has affected you.

After starting with my diagnosis, I usually will mention my pump and how it has drastically changed my life for the better. I always mention my third grade teacher, Mrs. Richardson. She was so welcoming to me as an 8 year old and she made me feel extremely comfortable in the classroom with diabetes. I remember when I got my very first insulin pump I ran to her to show her I was so excited. It is something I will never forget because no one else was excited to see it like she was.

A few weeks ago, I emailed her, thanking her and reminding her for treating me so kindly:

Hi Mrs. Richardson!

My name is Erika Szumel, I’m not sure if you will remember me, I was a student of yours about ten years ago. Maybe if I tell you my story, you will remember me a little better. I was, hopefully one of, your only students with Type 1 Diabetes. I remember you being so welcoming to me and making sure that I was comfortable in the classroom and always taken care of. You didn’t make me feel different, just cared for.

I am now a student at Seton Hall University and I still think about having you as my teacher. I remember that year I received my first insulin pump and I was so excited to show you. You were so excited for me! It was the best feeling in the world and I will never forget it.

I just wanted to say thank you so much for that, even though it seems small, it meant so much to me, and clearly it still means a lot to me.  Whenever I tell someone my diabetes story, I always manage to include you in it. I haven’t met many people or teachers like you that have made me feel so comfortable and great about my diabetes. And for that, I am eternally grateful.

So thank you. And if I ever write a book about diabetes (it’s on my bucket list), you will be a part of the story. And you will have one of the first copies.

She replied:
Hi Erika!
It was wonderful to hear from you, and OF COURSE I remember you!  Congratulations on your attendance at Seton Hall University, but I’m not surprised since you were such a terrific student. Reading your message of how I impacted your life brought such tears to my eyes.  To know that my small acts made such an impact in your life will forever be etched in my heart.  Diabetes was enough for an eight year old to deal with, so it was so important for me to make you feel no different than anyone else.  I’m so glad I succeeded!  I am so honored to be a part of your Diabetes “story” and will be waiting for an autographed copy of your book!  :+)

A letter like this is an invaluable reward that most will never understand, so thank you for taking the time to write to me.
Feel free to stop by The Hoop before the end of the school year!
XOXO,
Mrs. Richardson

My heart sank when I read this email. It just reminded me to thank the people that have reminded me that diabetes does not have to be an end or a closed door. It usually opens more doors than it closes.
So as a friendly reminder to all of you, thank the people that have helped you “write” your diabetes story!

WHY

I finally FINALLY get my numbers where I want them and I go high. I had a salad for lunch and a granola bar and then I walked a ton of blocks to try and buy tickets. WHY WHY WHY DIABETES WHY. I am not dealing with this tomorrow on my birthday. I’m not.

Go the Distance

Some of my favorite inspirational lyrics, from Hercules. The line highlighted in blue really speaks to me. I like to use this as a motivation in my life but also in my diabetes life as well.

I will find my way
I can go the distance
I’ll be there someday
If I can be strong
I know every mile
Will be worth my while
I would go most anywhere
To feel like I belong

I am on my way
I can go the distance
I don’t care how far
Somehow I’ll be strong
I know every mile
Will be worth my while
I would go most anywhere to find where I belong

Good news!

I talked to my mom this weekend about starting the Dexcom sensor. I have heard only good things about the Dexcom and although I wear a Medtronic pump, I really want to use the Dexcom. Every person my age that I have met that uses the Dexcom, is in better control than they have been, and for the most part likes the device. I have been in the city for just about a month, and I have not gotten into a schedule or set routine, and I am getting worried. My last A1C was a 6.6 which was perfect for me, and I am afraid it is not going to be that number when I go for my next appointment.

I am slowly learning my lessons and learning the consequences of certain things I do or do not do. The only problem is I can’t adjust my basal because every day is different. My schedule is constantly changing. It has been hard for me to tell where my sugar is escalating and where it is dropping.

I’m hoping that the dexcom will help me prevent escalated blood sugars for a long period of time. Or even a few hours. I am going to be in much better control once I have a sensor.

I am getting tired of fighting with this disease and with myself.

Educate yourselves

Yesterday I experienced and realized something. I am currently an intern at JDRF, the leading global organization that funds research for Type 1 Diabetes. A man that works in my department, made a comment. As he was handed a cookie by a co-worker, he said, “I can’t have that, I’ll get diabetes.” At this point of the day, my blood sugar was 271, so I was particularly cranky.

I was not just going to let it slide. So I said, “what did you say?” He repeated and I said, “No. That’s a stigma.” He tried to convince me and I just said, “you’re typical and that’s not necessarily true.”

I tried to not let this upset me but it definitely had my blood boiling. Thinking about it now, I’m glad I said something because hopefully that means that he will remember this moment and THINK the next time he says something about a disease he doesn’t necessarily understand. It still amazes me how every day the people that work at JDRF fail to understand a disease that they are fighting and working so hard for. I know it is a business and that these people are not here to understand the disease, but this is the headquarter office. I think they should know more. It could be a meeting once a month or even sent out in an e-mail. Just something.

I’ve supported this organization for a very long time. Knowing that the people in the main office don’t know what is going on with me or that diabetes is invisible or that I didn’t bring it upon myself does not sit well with me.

Found this awesome “diabetes etiquette” post a few years ago from AccuChek.

Diabetes Etiquette For People Who Don’t Have Diabetes

  • DON’T offer unsolicited advice about my eating or other aspects of diabetes. You may mean well, but giving advice about someone’s personal habits, especially when it is not requested, isn’t very nice. Besides, many of the popularly held beliefs about diabetes (“you should just stop eating sugar”) are out of date or just plain wrong.
  • DO realize and appreciate that diabetes is hard work. Diabetes management is a full-time job that I didn’t apply for, didn’t want and can’t quit. It involves thinking about what, when and how much I eat, while also factoring in exercise, medication, stress, blood sugar monitoring and so much more—each and every day.
  • DON’T tell me horror stories about your grandmother or other people with diabetes you have heard about. Diabetes is scary enough, and stories like these are not reassuring! Besides, we now know that with good management, odds are good you can live a long, healthy and happy life with diabetes.
  • DO offer to join me in making healthy lifestyle changes. Not having to be alone with efforts to change, like starting an exercise program, is one of the most powerful ways that you can be helpful. After all, healthy lifestyle changes can benefit everyone!
  • DON’T look so horrified when I check my blood sugars or give myself an injection. It is not a lot of fun for me either. Checking blood sugars and taking medications are things I must do to manage diabetes well. If I have to hide while I do so, it makes it much harder for me.
  • DO ask how you might be helpful. If you want to be supportive, there may be lots of little things I would probably appreciate your help with. However, what I really need may be very different than what you think I need, so please ask first.
  • DON’T offer thoughtless reassurances. When you first learn about my diabetes, you may want to reassure me by saying things like, “Hey, it could be worse; you could have cancer!” This won’t make me feel better. And the implicit message seems to be that diabetes is no big deal. However, diabetes (like cancer) IS a big deal.
  • DO be supportive of my efforts for self-care. Help me set up an environment for success by supporting healthy food choices. Please honor my decision to decline a particular food, even when you really want me to try it. You are most helpful when you are not being a source of unnecessary temptation.
  • DON’T peek at or comment on my blood sugar numbers without asking me first. These numbers are private unless I choose to share them. It is normal to have numbers that are sometimes too low or too high. Your unsolicited comments about these numbers can add to the disappointment, frustration and anger I already feel.
  • DO offer your love and encouragement. As I work hard to manage diabetes successfully, sometimes just knowing that you care can be very helpful and motivating.

http://www.accu-chekdiabeteslink.com/diabetes-etiquette-for-people-who-dont-have-diabetes.html#sthash.94eRCiZq.dpuf

Diabetes is not romanticized

It’s been a while since I have blogged on here, but I guess I have just been trying to figure some things out. I seem to be doing better with my blood sugars, and I am eating very well. I have been waking up every day and practicing at least 20-30 minutes of yoga before I leave for the office. It truly starts my day in the right way and makes me feel better than ever. I have been trying to drink more water because I think that it will only help me, but it has been hard.

I realize now more than ever how much of a stigma diabetes has. Like when people find out I have the disease, they say things like, “you’re not fat”. Our world is so uneducated and doesn’t understand that diabetes is not a disease that is brought upon oneself and it is not something that I wanted. People any age, shape, weight, or color can be diagnosed. I have been healthy my entire life and I plan on keeping it that way. I have been given one body, one mind, one soul, and I intend on taking good care of them. But I also want to break these diabetes “stigmas”. Stereotyping is something we all do, and it can be hard to change our ways. But living with a disease does not change the person that I am inside. Sure, it has shaped me in ways that others will not understand, but it doesn’t mean I am not a human being. With feelings. Or ideas. Or love.

You wouldn’t walk up to someone with cancer and say, “but you’re not bald”  or someone with AIDS and say, “but you look fine”. So why do it to someone with diabetes?

Diabetes is not romanticized like most other diseases. Again, it has been shaped into the disease of self-harm and self-hate. As if I brought it upon myself at the age of four. I can feel people stare at my insulin pump on the subway or watch them react to my tattoo. I am so proud of this tattoo because it speaks for me. And sometimes, I need it to. Sometimes I am tired of saying, “it’s an insulin pump. I have diabetes.” People still don’t understand what that means.

Do us all a favor, and if you don’t know something about diabetes, ask kindly. When you ask about my pump, ask kindly. Ask like you care. Even if you don’t, it feels better to think that you are actually interested in what I am telling you.

Most people I know with diabetes, are not fat. They are not the stereotype. They did not eat too much sugar as a child. They did not cause this disease to happen. They can not reverse it.