Diagnosed: Type 1 Diabetes at age 10; Kidney Failure 15 years later.

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How do you say, “Happy” would-have-been 16 years Diabetes Anniversary? This one is a little different because I am no longer a Type 1 Diabetic. Last year I was very sick in Kidney Failure and I was just trying to survive. Here is a post from two years ago:

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I’m writing this post to give insight on what my journey was like with Type 1 Diabetes. I want to hopefully help those who are dealing with Type 1 Diabetes themselves. For parents who have children that have been diagnosed. Also for anyone who wants to learn and understand what it’s like to live with this disease. I’m not a doctor by any means but I have 15 years of experience personally living with it.

November 2002

I’d like to say I was a pretty “normal” and healthy girl. I was playing competitive soccer for a few years and really found a love for it. The weekend after Thanksgiving, we had a tournament down in Las Vegas. That week of Thanksgiving I had been drinking quite a bit, which lead me to having to go to the bathroom a lot. We didn’t think anything of it because I was getting ready for this tournament and my parents figured I was just hydrating really well. The night before Thanksgiving I had my annual sleepover with my cousin. I remember thinking that I just didn’t feel very good that night, but as a 10 year old I just kind of brushed it off.

The next morning I still didn’t feel good but decided to go and participate in the family activities Thanksgiving morning. Everyone there kept telling me how my face looked very sunken in. I didn’t think much of it again because I just felt really sick at this point. We got home and my parents were trying to get me to drink a lot of gatorade to keep me hydrated. (Later on we realized that wasn’t the best thing for me…) I had to stay home that night and not eat Thanksgiving Dinner, which I was super bummed about obviously.

When I went to bed I was throwing up at least once an hour throughout the night. That morning we headed up to our family practitioner to see if he could figure out what was wrong with me. At this point I don’t remember much, I guess I did a urin test and he found ketones. My doctor then told us that we needed to go to Primary Children’s Hospital right away! I remember screaming in the back of the car telling my mom to hurry and drive faster. I was going in and out of consciousness and could see a white/bright light.

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We arrived at the ER just in time and the doctors said if I hadn’t arrived within the next 20 minutes I would have gone into a coma. Any guesses on what my blood sugar was? Keep in mind normal blood sugar is about 80-120. Mine was OVER 800. I was officially a Type 1 Diabetic. When they told me this, I had no idea what Diabetes was nor did anyone in my family because NO ONE in my family has Type 1 Diabetes still to this day. I spent about a week in the hospital. I was taught that I would be poked on every finger and toe, plus having to give shots as well. Also I will now have to count carbs, calculate how much insulin to give for food, how to correct high and low blood sugars and last but not least, calculate what my base rate would be. If I didn’t get the right amount of insulin for food I would have to give another shot or if I gave too much insulin I would have to eat more. Remember how I was ONLY 10 years old…? I had to grow up real fast, real quick.

Facts/Symptoms about Type One Diabetes

  • Urinating often
  • Feeling very thirsty
  • Feeling very hungry – even though you are eating
  • Extreme fatigue
  • Blurry vision
  • Cuts/bruises that are slow to heal
  • Weight loss – even though you are eating more

“Sometimes children can be in diabetic ketoacidosis (DKA) when they are diagnosed with diabetes. When there is a lack of insulin in the body, the body can build up high levels of an acid called ketones. DKA is a medical emergency that usually requires hospitalization and immediate care with insulin and IV fluids. After diagnosis and early in treatment, some children may go through a phase where they seem to be making enough insulin again. This is commonly called the “honeymoon phase”. It may seem like diabetes has been cured, but over time they will require appropriate doses of insulin to keep their blood glucose levels in the normal range.” (Learn more here: http://www.diabetes.org)

I had really good control for about 4 years. In those 4 years I had two seizures, and passed out in a restaurant from having low blood sugar. Back then we didn’t have the technology that we do now obviously. I wish so badly I had my Dexcom (a continuous monitor that tells you what your blood sugar is 24/7). Those low blood sugars are the scariest and worst feeling. If you aren’t a Diabetic it is so hard to explain what they feel like. It’s like being dizzy, light headed,  sweating, STARVING, shaky and anxious all at once for at least 15 mins. From having these low blood sugars and seizures led me to realize that if I had higher blood sugar that I wouldn’t feel this way and I wouldn’t have my parents worrying about my low blood sugars. I think it then really transformed into PTSD.

When getting to the age of Middle School, our bodies begin to change. It is hard enough to deal with hormones and everything else without having any other complications. In my case with having Diabetes it was a whole new level. My blood sugars would change because of my hormones. My blood sugar would be just fine and then at lunch for no reason it would spike to 200’s. I don’t think a lot of people know this that don’t have diabetes but when your blood sugar is not normal it causes people to act not normal. In my case, higher blood sugar, I would be really sassy, I would snap easier at people, I didn’t have patience, I couldn’t think straight etc. Same with having low blood sugars, you act really different then your normal self. Besides with dealing with hormones and diabetes, I also dealt with feeling left out with diabetes.

This was before social media was a thing. I didn’t know anyone my age and really didn’t even know anyone who had Type 1 Diabetes. I would have to leave early from class to go check my blood sugar, leave early from lunch and give more insulin and I could never really talk to my friends or anyone about it. At that age all we care about is the cute boy in class or who is hanging out on the weekends. It was hard being a 12-14 year old girl who couldn’t be “normal” like everyone else.

When I was 11-13 I went to Diabetes Camp, where I met kids my age who had Type 1 Diabetes. It was so awesome to finally be around kids who understood what we all were going through. It would last about a week there and then we didn’t really stay in touch because social media and texting weren’t really a thing. This was also the time that I was put on an insulin pump called the Deltec Cozmo which I remember was pacific blue! 😆  It was amazing to have this freedom of not taking shots every time I ate or needed to correct a high blood sugar. I also really liked having a pump because it was nice to suspend the basal while I played sports.

cozmo

A little while later is about when I started to transition into not wanting to deal with this responsibility anymore. I was sick of being the odd one out, I was sick of no one that I knew personally didn’t understand what it was like and then I was just scared of low blood sugars. I also want to point out that I did not like my doctors either. They weren’t compassionate and understanding. A couple of other things I want to point out before I continue on to my story is that my parents and family did everything they knew and could to help me. They have always been my #1 supporters and have been through thick and thin with me. I wouldn’t be here today if it wasn’t for all the love and patience they had with me. It just comes to a point where it is ultimately up to me or the person with Type 1 Diabetes on how they want to live their life.

If you don’t want your kids to get any ideas of how to not take care of themselves don’t let them read the next paragraph. I don’t want to be the cause of giving someone an idea of how not to take care of themselves.

About 8th/9th grade I really wasn’t happy and kind of scared of my doctors. They would almost “threaten” me if I didn’t do this or that. When I had my seizures like I said earlier I felt that I needed to keep my blood sugar higher so I won’t ever have to feel those low blood sugars. Obviously being a kid I would check in with my parents and they were really involved with what I was doing like any parent would. I thought to myself that I need to keep my blood sugars in the normal range so that when I show my parents my blood sugar, they won’t be mad (even though they were never mad).

I figured out that the fake blood that would come with the blood sugar meters to make sure the test strips were working always gave a really good blood sugar reading. I started to use that to test my blood sugar. I would sometimes test my real blood and it wouldn’t be good and I would give a little insulin but not much. I then would go into the doctors office to get the annual A1C test. It is a test that is a form of hemoglobin that is measured primarily to identify the three-month average plasma glucose concentration. The test is limited to a three-month average because the lifespan of a red blood cell is four months. They would get so confused as to why my readings were so good but my A1C didn’t match up. I began to just act like I didn’t know why. They would try to adjust things and then we would leave but I would just keep doing what I was doing.

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I started to see some reactions to not taking enough insulin and keeping my blood sugars higher. I started to lose a lot of weight, I was really tired, I couldn’t think straight and I started to feel like I would have vertigo when I walked.

22Old photo, the quality isn’t the best 😆 

My parents eventually caught on to me doing this, so they had me test my blood sugar in front of them. I would gather my tester and things in my room and before getting into their room. I would put a little drop of fake blood on my finger, go in their room, pull out my tester, pretend to poke my finger, push on my finger like I was trying to squeeze blood out, and then use the fake blood to put on the test strip. A little bit later on after I would have my A1C’s done and now they were averaging around 10 on the scale. Doctors and my parents again caught on to what I was doing. They had me admitted to a hospital to have doctors watch over me and slowly bring down my blood sugar. When I was averaging about 300 blood sugars, 190 felt really low. Eventually I got it under control again and left the hospital.

Through high school I did a little better with managing my Diabetes. I had now switched back to doing shots because the doctors claimed that pumps were for people who only had the best control of their Diabetes. I also was not able to get my drivers license until I was 17 because my A1C was not where it needed to be. I then realized that I had a fear of driving, especially on the freeway. I believe it was a fear of getting low blood sugars while driving. (What’s crazy now is that I am no longer scared to drive. As soon as I received my transplant and I was able to drive, it was like nothing was wrong. I drove perfect with no anxiety)

  When I was dating in high school most of my boyfriends were supportive but we never really talked about my Diabetes. I do remember that one of my boyfriends told me “jokingly” that he did not want to touch me because I was like a robot with all of my devices. Even though he was joking I was still hurt by it and I think it led me to start not taking care of my Diabetes again. Obviously we broke up not long after he told me that.

In 2010 I went off to college and my Diabetes was really hard to manage while I was up at school. In May of 2011 I went into DKA. This was caused from not giving myself enough insulin because I was so scared of low blood sugars. When I arrived at the ER they had to be really cautious in bringing my blood sugar down. They wouldn’t let me drink anything and I was really dehydrated from the DKA. The doctors were nervous about the swelling in my brain and if given more fluid it could be detrimental.

247918_10150620550225018_6695476_nI am very lucky to have made it our alive from DKA and lucky to have the support from my family throughout this journey.

In 2012, I was able to get the new OmniPod Insulin pump as well as the first ever Dexcom glucose sensor. It was amazing how much technology had changed in 10 years since I had a pump. Those few years in middle school, high school and college, my A1C was 14>…. so probably about 5ish years at that point. When I got my new devices that’s when I started to do better with the control and figuring out my blood sugars better. The next four years I was still dealing with my PTSD of having low blood sugars and really trying to take care of myself the best I could. Having that glucose monitor and better technology gave me more time before going into kidney failure.

11834836_10155771623710018_6494483163104458579_oI spy my Omni Pod Insulin Pump 😉 

I know people are going to say, “Well you should have taken care of yourself better.”, or “You’re an idiot because you made your life a lot harder than it had to be.” False. Do not come at me saying that you would have done any better than I did. You didn’t walk in my shoes even if you have Diabetes. Our journeys are so different from each other even though we have this one thing in common. No matter how perfect I could have kept my blood sugars under control, the Diabetes was damaging my body every single day when the blood sugars were higher than a person without diabetes. It was a slow death to my body. It put me in Kidney Failure, and a lot of people don’t know this, but it was taking my eye sight at the same time. It let me to get Diabetic Retinopathy in both of my eyes. I had to get shots in my eyes to try and control bleeding and swelling.

Here are some of the most important things to know or have in my eyes when dealing with this disease.

  • Use the technology we have available if possible. That will be a huge help in managing your diabetes. I really liked my OmniPod and my Dexcom Glucose Monitor.
  • Find friends, relationships and groups that are supportive. Get into social media groups on Facebook or Instagram that are dealing with Diabetes.
  • Even though we are told as Type 1 Diabetics that, “You can eat whatever you want, but make sure that you give insulin for it”, don’t just eat junk food and fast food. Our bodies are already struggling with this disease. Try to nourish it as much as possible with good food. That being said don’t miss out on going out for ice cream or having a midnight snack!
  • Get an Endocrinologist you can get along with and that is understanding to YOUR personal needs. This one was huge for me. Later on in my twenties, I finally found one that I loved and could connect to.  I also found a Dietician who specializes with Diabetics. I really give him and my Endocrinologist props for being able to finally get my A1C down. They made me feel like I wasn’t just another number.
  • This disease never sleeps and we cannot be perfect at controlling it. Don’t expect to be perfect and don’t expect your kids to be perfect. There are so many other factors that go into managing diabetes (hormones, emotions, stress etc) it isn’t as easy as doing a math problem. All we can do is our BEST!

Live your life to fullest. As cheesy as this sounds, life is too short. I have realized that with going through Kidney Failure and getting a Transplant that we only have one life. I am so blessed to be given a second chance at my life because of my organ donor to have a chance to do better and make him proud. I don’t regret or wish I had done anything different. I believe we have choices and those choices have consequences. I am not perfect but I did my best. I believe that I am here because I can be an advocate for Type 1 Diabetics. I can be that person to learn from my mistakes.

Getting a transplant IS NOT A CURE. It doesn’t take care of your diabetes for forever. Eventually I will have to go through the transplant process again. PLEASE DON’T NOT TAKE CARE OF YOUR DIABETES BECAUSE YOU THINK THAT GETTING A TRANSPLANT IS AN EASY WAY OUT. I didn’t even know if I was going to be eligible to get a transplant at the time I needed one. So many people die waiting for a lifesaving organ. I was almost one of those people. When I got my transplant, my kidney function only had 5% left. (Read here for my Kidney and Pancreas Transplant)

I hope there will be a cure for this disease because this was a huge part of my life. Now that I am all of the sudden not Diabetic, does not mean I don’t care anymore about the Diabetic Community. Thank you for everyone who has reached out to chat about my transplant and just being there for me! Thank you to everyone who is an Organ Donor and especially for my Organ Donor who saved my life, when He lost his. I’ll leave the links below of my transplant stories.

Also I am coming up on a year mark of having a transplant! ❤️

Photo Jan 19, 2 42 41 PM

 Kidney and Pancreas Transplant Journey

Part 1 | Part 2 | Part 3

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