November is Diabetes Awareness Month. Let’s find a cure!

Since November is National Diabetes Month, I wanted to write short article to raise awareness on Type 1 Diabetes. I have included two interviews. One is an interview with my boyfriend Adam on what it’s like from his perspective living with a Type 1 Diabetic (ME!). The second is an interview of my good friend Maddi (who is a T1D) on what it’s like for her living with the disease. I wanted to focus on getting a well rounded view to help educate people who don’t know much about it to help inspire them to donate towards the cause of finding a cure for the disease. I also hope to help those that have the disease feel less alone in their day to day struggles with the personal experience shared here.
To donate to JDRF (Juvinile Diabetes Research Foundation) to help find a cure go to this site link
Find a cure!

Adam and I have been together for a little over a year now. He has been wonderful in many ways but especially in showing emotional support to me on days when my Diabetes is giving me problems out of my control. Adam is open to constantly learn new ways to better help me on rough days. I am so grateful for that. Below is the interview of what it’s like for him living with someone with T1D.

What are some of the fears you have in living with a T1D?
I can’t say I experience much fear. I tend to keep an optimistic attitude, and don’t succumb to “what if” type fears. I have experienced a seizure with her, so there’s a part of me that fears that it will happen again, but I just make sure to be prepared, to notice the signs of low blood sugar, and just stay positive and supportive.

Is it easy for you to notice the signs of low blood sugar? If so, what do those signs generally look like?
I can tell she’s low when she acts sleepy, and sometimes a little giddy, sort of like someone who’s half asleep and also a little tipsy on alcohol. When I see these signs I just try and get her to drink juice until she feels better.

Have you done anything special to help make your significant other feel less alone in the disease? Yes, I bought a fridge for the side of the bed that I try and keep stocked with juice in case her blood sugar goes low, and with Glucon shots in case it goes REALLY low. I also try to regularly reassure her that there’s nothing about her condition that bothers me or makes her less desireable to me.

What do you think is the best way to show support when your significant other is dealing with low or high blood sugar?
I just try to be patient, and do what I can to get her the right solution, whether it be juice or insulin.

What was it like for you when your significant other was experiencing insulin shock (seizure)? What were you thinking and feeling? What action steps did you take during the seizure and after the paramedics left?
It was very scary. The first time she seized, she was on the couch near a glass coffee table, so I moved the table away from her, put pillows on the floor, and just got her on the floor so that she didn’t fall while seizing. Once I knew she was safe I called the paramedics, and just stayed near her to make sure she didn’t hurt herself. Once the paramedics determined that she was safe, I made sure she continued to eat even though she wasn’t at all hungry. Then I helped her buy cupcakes to take to the fire station to thank the paramedics :)

Is there anything you take into consideration when planning to eat out?
Not really. She’s pretty good at letting me know what she can and can’t eat, and most restaurants have options for her.

What would you like to tell those who don’t know much about T1D in regards to what it’s like for someone living with diabetes from your own perspective?
Just be loving and supportive, and don’t ever make your partner feel like they are a burden.

What do you find inspiring about the life of a T1D?
I think people underestimate the disease, and have no idea what it’s like to have to regularly maintain your own blood sugar levels. Living with someone who does just gives me a tiny view of what that life is like, and so I admire the strength that it takes for people with this condition to maintain a positive and healthy lifestyle.

Maddi and I have known each other for a total of 13 years now. We met at Bearskin Meadow Camp, which is a summer camp for adolescence with Type 1 Diabetes. At this camp we got to sleep under the stars, feel less alone in our disease, talk about new ways to handle our day to day management and participate in fun summer activities! Maddi and I became very close in the week we spent there. We fell out of touch but reconnected a few years ago thanks to the ever growing social media sites available. Getting back in touch with her has been wonderful. I don’t have many friends that have T1D, so it’s nice to know that I can reach out to her for anything in regards to T1D. She has a son, Gavin, who was just diagnosed with the disease as well. She shares a real indepth view of the good and bad that goes along with living as a Type 1 Diabetic on a daily basis! For more information on the camp we went to (they have programs for youths as well as adults!) visit this site link here
Bearskin Meadow Camp

What age were you when you were diagnosed with T1D?

I was 12 years old! Diagnosed on September 11, 2003.

What was that first day in the hospital like when you were told you had the disease? What thoughts and feelings were you experiencing?

To be honest, I don’t remember a ton about that day. I had been so sick for so long, that I think my body wasn’t able to perform basic functions- rational thinking and reasoning being one of them! I remember feeling scared and totally powerless, because once we got to the hospital everyone snapped into action pretty quickly. I was hooked up to what felt like a thousand machines, and the rest is a blur.

What were the warning signs that led you to take your son in to get tested for T1D?

Gavin had lost a pretty substantial amount of weight in a short period of time. He was constantly asking for “wawie” (water), and had a ton of wet diapers. He had also become very aggressive and was having some behavioral issues, which didn’t seem like the normal two year old temper tantrums. We were extremely lucky in that we caught it within the first few weeks that the diabetes onset. Perk’s of being a diabetic mom! I knew what to look for. Most devastating moment of my life was the moment I saw his blood sugar come up on my meter, and it was high. And so the journey began!

What are some of the fears you have in living with T1D for yourself and for your son?

Oh man. What a great question. This is hard to be vulnerable about, because as a mom I want to be the face of strength for my child when it comes to living with a disease. But I have fear that my own health and struggles with diabetes will keep me from being able to be the best mom I can be. Diabetes is an extremely physically exhausting disease to live with- my body just does not function at the same level and with the same amount of energy that someone without health issues does. I am afraid that I will never be “healthy”- which is some vague ideal that even I can’t really put my finger on, because what “healthy” means is different for everyone! And yet I still feel less than.
My fears for Gavin living with the disease can run rampant on any given day (hello mom-anxiety), but my biggest are that as he gets older he will struggle with accepting his diabetes, like I did, and that it will become a burden for him, rather than an adjustment that he has to make to his daily routines. I think it’s important to say, too, that those fears are probably not unfounded. In my experience, and in the experience of others I know with T1D, we all struggle with those things at some point. They’re normal feelings to have when you’re told you will have to do things differently than the rest of the people around you, in order to function normally and frankly, to stay alive. Staying alive becomes a “to do” list item, and those tasks (checking sugars, taking shots, correcting lows, etc) can take up a pretty significant portion of the day, both mentally and physically. I never want Gavin to feel that his diagnosis makes him “less than” others, like I often have. As his mom it breaks my heart that I can’t protect him from that.

What is most difficult for you when it comes to dealing with your diabetes? What comes the easiest?

Hmmm, this answer changes from season to season of my life! But right now I would say that I am really struggling with low blood sugar! I am currently pregnant with our second child, and she has thrown my blood sugars into panic mode or something! I feel like I am constantly correcting lows, and changing my basal rates on my insulin pump. Low blood sugar always pops up at the most inconvenient times, too. Chasing a toddler through the grocery store + being 6 months pregnant + having a low blood sugar= my personal idea of hell! As for the easiest- the pump has made my life sooooo much easier! What a life saver, literally. I don’t need to think twice about calculating how much insulin I’ll need to correct for the carbs I am eating, or for my blood sugar levels. Gavin is currently still using syringes (health insurance won’t approve the pump until 6 months after diagnosis-because apparently they think his T1D is going to go away?! Ugh, don’t get me started) so currently we have to do all of the calculations and drawing up of insulin manually. It has made me SO GRATEFUL for my pump!

Is it easy for you to notice the signs of low blood sugar? If so, what do those signs generally look like for you? Are those signs the same for when your son is experiencing low blood sugar?

I catch my lows pretty quickly now! When I have a low, the first sign is usually that i start to feel shaky and I get this weird mental fog. I can’t think clearly or rationally. I start to over analyze everything going on around me. Weird? I know! For Gavin, I know he’s going low because he stops running everywhere (his normal toddler demeanor) and kind of just mopes around. He gets quiet and zones out. Sometimes I can tell his hands are shaking, but usually he’s never still long enough to be able to get a good look at them!

What do you do to help yourself feel less alone in the disease?

Well, now I have a tiny T1D companion! That helps. Besides you Stephanie, I don’t know many other diabetics! Growing up, we went to Bearskin Meadows which was SO helpful in keeping me from feeling alone in the disease. I would come home from camp feeling like a totally different kid- more confident and sure of my place in the world. We are looking into going to the family camp there this summer! Also, thank god for the internet- there are so many great websites and forums to connect with other diabetics via the interwebz.

What do you think is the best way for loved ones to show support when you’re experiencing low blood sugar/high blood sugar?

Low- get me juice/snacks I ask for! Then leave me to munch in peace. Don’t hover! Haha!

High- give me space and time to rest.

Lows and highs take such a huge toll on energy levels, that someone giving you permission to just take care of yourself and let your body rest can be so invaluable in a world that tells us we need to be “on” 24/7.

Have you experienced insulin shock? If so, what was that like for you emotionally, physically and mentally?

I have not experienced insulin shock personally, though Gavin recently had a hypoglycemic seizure- most terrifying experience of my life and, I’m sure, his!

Do you feel at times that have T1D holds you back from being able to achieve everything you want out of life?

Yes and no. I have found that having diabetes means I need to take many more breaks, and as I mentioned earlier, that can be very inconvenient in a world that values “the grind”. I am having to really change my ideas around what “being successful” means to me. What do I value in life? Why do I value those things? How does my diabetes play a role in my ability to achieve the things that are important to me? These are all questions I’m still asking myself! And it’s a blessing to learn more the deeper I go.

Is there anything you take into consideration when planning to eat out?

Thankfully, the pump has given me the ability to pretty much eat whatever I want! So honestly, no. The only thing I take into consideration in regards to my diabetes is whether or not their nutritional information is available- in order to figure out how many carbs are in whatever I order. However, after 13 years I’ve gotten pretty good at “guestimating”, if the nutritional info isn’t readily available.

What would you like to tell those who don’t know much about T1D in regards to what it’s like for someone living with diabetes from your own experience?

Well, I would want to dispel a bunch of myths right off the bat. There is so much misinformation out there about Type 1! I think the best way to support someone with diabetes is to educate yourself. Here are some answers to a few things that come up pretty frequently in conversation with non-diabetics:

1. I didn’t give myself diabetes. Type 1 Diabetes is not caused by eating too much sugar, or fat, or carbs. Juvenile diabetes is a autoimmune disease in which the pancreas attacks itself and renders it useless. Many things play a role in the onset of T1D, and none of them has to do with a choice we made.
2. No, my diabetes isn’t going to go away with diet and exercise, or with that fad diet/supplement/meditation/yoga etc that you just heard about. I will have this for the rest of my life, or until there is a cure.
3. Type 1 and type 2 diabetes are different, and each deserves their own understanding and respect. What I have to say about Type 1 Diabetes, doesn’t necessarily apply to Type 2 Diabetes. They onset differently, and have different treatments and challenges.
4. I can eat whatever I want! If I choose not to eat something, it is because I have found that it affects my blood sugar in ways that have become unmanageable for me. And they’re probably not the things you might think! Yogurt, for example, totally makes my blood sugar shoot up in the morning! Even Greek yogurt! And that’s considered a typical “healthy” breakfast food. I can eat a Butterfinger and see no affect on my sugar (as long as I correct for the carbs in it, of course).

Finally, please give us grace. Like many other conditions and experiences, it is impossible to understand how it feels to live with T1D unless you have it. Sometimes we are moody, and we get tired more easily. I might have to bail on that thing that I promised I would do, or that event I committed to being at, because my body is telling me it needs a break. My toddler might throw the most epic meltdown, and he might be mean to your kid for no reason. He’s not a jerk, his blood sugar is just high! We promise not to ever use our diabetes as an excuse, unless it is absolutely warranted. Please give us grace and space to live with our disease, without making us feel bad for it. We will appreciate your willingness to understand more than words can express.

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