It's November! Finally the holiday season! Which also means it's #DiabetesAwarenessMonth! Throughout the month, I'll be covering so many topics and discussing information about what it means to live with Type 1 Diabetes, the issues facing the community today, and what we can all do to help educate and work towards a cure.
I’ve talked a bit about my journey with Type 1 Diabetes a few times before on the blog and definitely on Instagram. But because it’s Diabetes Awareness Month, I’d thought I’d share a little about my diagnosis story once more. I'll also be talking about the major impact having a support system has had on my health and my life as a whole.
My Diagnosis Story
My entire life, I've been on the heavier side. I was bullied. A lot. I can remember incidents starting in pre-school and ending the last week of my senior year of high school (this is another post for another time). Anyway, when I moved to San Francisco at 19, I started losing weight. I blamed it on the fact that I was constantly walking up and down steep city streets, that I was a starving college student living off of coffee and Cup of Noodles. But the first sign that told me these weren't the reasons was that I was always extremely thirsty and peeing every 30 minutes. The urgency with which I had to go to the bathroom was so intense, sometimes I couldn't go back to sleep because I didn't want to have an accident.
One weekend, I took the Caltrain home to visit my parents. I was so thirsty, I probably drank the entire gallon on the water cooler within a day! My mom noticed immediately and she did what any concerned mama would do, and took me to see the doctor. After some blood work and sitting in a cold exam room for over 20 minutes, the doctor walked in and with his back turned to me said, "yup, you have Type 2 Diabetes."
Without compassion or without hesitation, he said I needed to improve my eating habits and lose a lot of weight immediately if I wanted to stay alive past age 30. On that day, I weighed about 200 pounds. I WAS overweight. I DID need to improve my diet and activity choices. So in my mind, the doctor's diagnosis and sheer anger was valid. I was angry with myself. All I remember now from those really depressing days following my diagnosis was hunger, shame, and crying. I was also prescribed about 4 oral medications to help control my sky-high blood sugars. I went back to my studio apartment in San Francisco feeling defeated.
And time passed.
About a year and a half went by and I had gone from 200 to 130 pounds. The thing was, I wasn't doing anything different besides taking 4, then 5, then 6, then 7, then 8, then 9 pills daily to control my high blood sugars. But they didn't help. Logically, losing weight should have helped control my diabetes. On the other hand, it only made it worse.
Eventually, I ended up seeing a new specialist who shockingly re-diagnosed me with Type 1 Diabetes. She was surprised no other doctor had ever tried to test me for Type 1 because my symptoms were obvious. I was taken off all oral medications and instead put on insulin injections multiple times a day.
But, I was still neglectful and still in denial about me being sick. I rarely took my insulin. But when I did, my appetite would increase so I would rather just not deal with it and not take it at all.
I continued to lose weight because without insulin, my body was trying to get rid of all of the sugar inside me. My body was basically attacking and eating itself. Sounds gross. It is. And very very scary.
By now, I was in a new, healthy relationship, had just started an exciting new job with an interior designer, and I was able to wear whatever I wanted because I was thin for the first time in my life. And I'm not gonna lie about that part because I think it's one of the reasons I felt okay about neglecting my health for so long. I was able to walk into any store and find my size without trouble and everything fit! It was a dream come true!
I felt pretty and sexy, things I had never felt before.
Things seemed to be going well, except, I physically did not feel good. At all. My vision was extremely blurry. My mouth was always so incredibly dry, as were my hands. My knuckles were sometimes bloody and raw from how dry they were. I was still peeing constantly and my legs would swell up until they were almost purple.
At one point, I went on vacation to Mexico with my parents. The year before, we had gone zip lining, hiking, horseback riding, but this year, it was out of the question. I had almost very little muscle left in my legs (seeing as my body was breaking down slowly) that sometimes, I would be standing still and all of a sudden, fall over.
There were also times where I would wake up at 8am, eat breakfast, go sit on the couch, fall asleep and not wake up again until 5pm. And, even then, I'd crack open one eye, and could not for the life of me get up.
In mid October of 2015, Joey and I went on a day trip to San Francisco. As soon as we got there, I could only take a few steps without wheezing and having to stop for air. I felt like I was running a marathon. Joey suggested several times that we go home, but I shrugged it off and said it was nothing.
Later that day, I had the worst headache I have ever had in my entire life. We decided it was probably best to head home after that. But on the drive, it became so bad, I laid down, and pretty much passed out. When I woke up over an hour later, I had the intense urge to throw up. And my headache, somehow was worse than it was before, even after a couple of pain pills. My poor Joey was speeding and worried like crazy.
He got me outta the car and I ran to the bathroom in my house, thinking I just had to throw up and I'd feel better. Even with me telling Joey I would be fine, he went in to my parents room to get my mom. They immediately drove me to the ER.
A lot of this is a blur, but I remember being admitted almost immediately, answering a few questions, and then somehow I ended up in a gown, in a bed, begging for water. They gave me ice chips and I couldn't get enough of them. The one part I remember most clearly has stuck with me every day of my life and brings tears to my eyes even just writing this.
The ER doctor looked at me and bluntly said, "if you would have gotten here even an hour later than you did, you would not have made it. You would not be here right now."
I was in the intensive care unit for about a week. My mom stayed with me as much as she could. Pretty much my entire family, boyfriend, and best friends came to see me. I love them all so much. Each and every one of them are the reason that I wake up every morning and deal with my Diabetes.
I'm still learning each and everyday how to avoid falling into this situation again. It is an everyday battle, but it is always comforting to know that there are welcoming communities all over social media, as well as encouraging medical professionals that want to help.
Type 1 Diabetes is no joke. I say this to you as someone who was minutes from dying from this horrible disease, it sucks, but it is so worth it to get past the numbers, the needles, all of that crap.
Your life is worth it.
I’m not ashamed. I want to share my story. And I hope this is the start of a crucial dialogue surrounding the community of Type 1's.
The Importance of Having a Support System
As I mentioned previously, my family and friends are a huge reason why I wanted to get healthy. Each and every person within my support system has played a major role in my journey and continue to inspire me to keep moving forward every single day.
That night that I went to the ER, I realized my boyfriend, Joey, was a keeper and someone who would care and protect me no matter what. To this day, he doesn't like to talk about that night because he just breaks down and then we're both a blubbering mess. But regardless, he's always attentive when it comes to my diabetes and is always asking how he can help. Although sometimes when I'm having a bad low, I have to ask him to please stop talking about Marvel or Star Wars because I need some peace and quiet!
My parents are of course my biggest supporters (and sideline worriers). My dad usually doesn't bug me about checking my blood sugar or things like that. He is however always curious when I need to change my pump, but he hurriedly sneaks away when I have to insert the needles!
My mom is always curious as to what I'm doing or how I'm feeling. For a long time after my stay in the ICU, she was worried whenever my blood sugar was even slightly out of range. She would yell at me (yes, even in my mid-20's I was getting yelled at by my mom) for not taking care of myself. But once she began to learn more about Type 1, she realized how different it was from Type 2, especially in the way it's treated, and the overall lifestyle differences.
She's since then attended conferences with me (as has Joey) and even learned how to change out my pump and infusion set for me.
My sister is also really sweet about it (no pun intended). She used to send me links and articles about possible cures or developments in the Type 1 community. That's always encouraging. Especially when I'm having a bad day but see a link from my sister telling me how cool this latest gadget looks!
My friends are also really supportive and awesome. One of my best friends even went with me to a seminar once that covered all of the latest technology changing the lives of diabetics around the world.
They also don't get upset or frustrated when I have a low blood sugar moment, have to change my pump site in the middle of something, or am running late to dinner when I have to run home and pick up some supplies I had forgotten half way to the restaurant.
I know it's difficult to open up about your illness or issues, even to people you're close to in your life. Heck, sometimes it's harder to share things with them than with strangers. But I think it's part of diabetes management.
I've definitely had moments when I've bottled it all up, when all of the negative thoughts get to me. I start thinking, "What if my children inherit it? What if I can't have kids at all? What if I fall asleep and never wake up because of a low blood sugar? What if my pump stops working? What if, what if, what if..." It's overwhelming.
I've found myself crying in Joey's arms several times, scared, embarrassed, burnt out. And I mean, that's okay to be emotional about it sometimes. Type 1 diabetes is a serious condition that takes up a lot of precious time. But it's so crucial to talk to someone, ask for help or support to avoid bursts of pent up emotions that can make you sick.
Look to your family, friends, co-workers, classmates. More often than not, they want to be there to help in any way they can.
Your medical team, which includes your family doctor, endocrinologist, nutritionist, therapist, should also be part of that support system. They have all of the knowledge, so they can be helpful when it comes to easing your mind about things or answering your burning questions. If you don't feel supported or that they are knowledgeable about Type 1 specifically, bid them a dieu and get yourself a new doctor.
Another form of support that has made me feel so open and hopeful about my diabetes is the online community of type 1's.
There are Facebook groups, Instagram pages, Type 1 influencers, advocates, and organizations that are an incredible resource!
Here are some of the Type 1 Pages, Organizations, and Influencers that I highly recommend joining and following along:
Organizations & Non-Profits:
And there are soooo many more! If you follow one, you'll soon find out about other pages and groups! We have a wonderful community!
If you have any questions, please feel free to contact me. I’m not a medical professional so I would only be able to provide my point of view and experiences.
I also want to be available as a form of support to you if you're a Type 1 diabetic (or not) and just need a friend to venture through all the chaos. It's been so great to connect with other Type 1's around the world from Italy to Australia to just a few hours away here in California. My door (or inbox) is always open!
For resources or to learn more about the topics I covered in this post, please visit the following pages:
Thanks for reading!
-The B of V