I honestly can’t even believe I’m typing this. Why, because sometimes I still can’t believe that I have Type 1 Diabetes, and/or that I’m not cured yet. They say there is no cure, but they recently cured a woman in China late last year.
Let me start by saying that, there are many people that were born with Type 1 Diabetes and lived long, full lives. I’m grateful that after 10 years, I’m still here. Still healthy. I’m still physically strong and still learning how to navigate this disease. Living with Type 1 Diabetes is NOT EASY. It’s an every.day.mental.ride but it’s a ride we must take to stay in the land of the living.
My Type 1 Diabetes Diagnosis
I have three children. I had gestational diabetes with the 1st and 3rd child. Now if you get gestational diabetes, it’s a strong probability that you could get Type 2 Diabetes later in life. That’s right, I said TYPE 2! My last child was born in 2013. In late 2014, I started having symptoms that something was off. I was using the bathroom 3-4 times a hour, my vision was getting very blurry different times of the day, I was very tired and just had to go to sleep more often, I was so thirsty my mouth would get dry if I wasn’t drinking something. I put all of those symptoms in Web MD and Type 2 Diabetes came up.
In January 2015, I asked my doctor for a diabetes test during my physical. All of my other numbers were in range except for my blood sugar. It was 3x times higher than it should be. I came back the next day and it was the same. My doctor immediately said, “You have Type 2 Diabetes.” and put me on metformin. After checking me a couple of weeks later, there was no change. She put me on injections, no change. Then they did another blood test and found out that I had Type 1 Diabetes. No cure. Life changed in that moment.
What is the difference between the Type 1 and Type 2 Diabetes
A quick explanation is, Type 2 is brought on by your diet and lack of exercise. You can heal yourself of Type 2. Type 1 Diabetes is an autoimmune disease. Your pancreas produces cells (called Beta cells) that give your body insulin to regulate your blood after you eat. Well, when you have Type 1, it means that your body turned on itself and acted as if the Beta cells were the enemy and destroyed them all. Once they are all gone, they are gone forever. That means you have to inject yourself with insulin forever. So, no amount of eating good and exercise is going to bring back the function of cells you no longer make.
Type 1 & Type 2 have the same symptoms and unfortunately the same horrible things that could happen to you if you don’t take care of yourself. So it’s easy to think you have Type 2. The only way to find out if it’s Type 1 is a certain C-Peptide test. Also, although the symptoms are the same, the diseases are NOT and neither is the treatment.
So, when you watch TV or listen to companies (and people) talk about Diabetes, it’s almost ALWAYS Type 2 Diabetes.
How my life changed
Once I was diagnosed, I had to learn about the disease on my own. I was given an endocrinologist, but she was more worried about my A1C numbers than educating me on what this disease actually is. Counting carbs became my new normal and giving myself insulin with every meal, even drinks (unless it was water). I had to take insulin for anything that would raise my blood. At one point, I was able to wear a device on my body that gave me insulin, which saved my fingertips from daily pricks. The downside to that was that it scared my body when I had to change them every 3 days.
I had to worry about what my blood glucose numbers were ALL OF THE TIME. I needed to be in a certain range. If it’s too low, you could go into a coma. If it’s too high, basically the same thing. So, for a while, I was nervous to fall asleep. I went into a deep depression and couldn’t believe this was my life and did the whole, “Why me Lord?” I had to start going to see an endo every 3 months to get this magic number, A1C. This number tells the doctors how good I’m managing T1D. I was NEVER in range.
I started going to the eye doctor twice a year, and the foot doctor once a year. We had a new medicine shelf in the refrigerator for my insulin. I then started wearing a new device that I change every two weeks, that tells me what by numbers are through my phone. And on and on …
Initially, I just told my husband. I didn’t even tell my kids for a few months. After I shared with my family my new reality and diagnosis, that lifted a burden because I was initially hiding while caring for myself. Then I told a small circle of “friends”. That is something I regret to this day. I regret it because this was a BIG deal to me. A life changing disease with NO CURE. And once I told them … I can count on 1 hand how many times I’ve been asked by this “friend” circle, “How are you doing with your Type1D? How is your mental? How can we support you?” Nothing. Nada. Zip.
Outside of my best friend who has asked all those questions throughout these 10 years. I just felt like if you weren’t ever going to say anything to me out of concern, ever, then I could have just kept it to myself, and they all could have just found out with the rest of the world when I shared it on my site.
Where am I now?
10 years later, I’ve now had 7 different endocrinologists. I left one, but the others left the doctors’ offices for different reasons, and I didn’t follow them. I’m still on the journey for a normal A1C. I haven’t reached it in 10 years. Y’all pray for me. My last visit (last week) was the closest that I’ve ever been. I take 2 different types on insulin. One that last 24 hours and keeps me stable. And another one that goes with my meals.
When I leave the house, I make sure I have my wallet, phone and insulin pen. 10 years later, I still only know a few people that have Type 1 Diabetes personally. I am in an IG group for blacks who have T1D which is great because I’ve gotten great tips and resources, but I don’t know them in personally. I even did a podcast earlier this year sharing my experience because of this IG support group. Outside of my hubby, mom, granny & the bestie I really don’t talk to anyone about my T1D unless they ask.
From what I’ve heard in the past, “You look good, so I thought you were good” so if that is the mentality most people are going with, I guess they will never ask. But believe me, we are not always good. I’m open to talking about it and if people ask, I am quick and glad to educate them, but I will never force it on anyone.
A few years ago, I had an amazing experience with Abott Freestyle Libre. They saw my post online and reached out to me as an influencer. I worked with them for about three years. I got paid to speak and share my story online and free sensors. That was a huge blessing.
10 years later, I’m still praying for a cure that doesn’t involve a pancreas transplant. I’m still praying God will allow me to be the miracle and heal my pancreas. Still daydreaming of days I don’t have to take medicine with every meal, and I can just be as free as the people around me. I am also praying that while I live with this disease that medical cost will come down. Biden had that insulin down to $25! Not sure yet what this new administration is going to do for the cost now.
Grateful
I’m grateful for 10 years of health. 10 years that I have been able to see my children grow. I pray for many more years, 30 plus of healthy, happy & healed years. If you’re living with T1D, my prayers are for you as well.
