My Story

Everyone has that turning point in their life when everything changes, whether it’s for the better or worse. It could be a family member’s death, an ex-boyfriend’s wedding (or your own wedding), a career change or a diagnosis of a chronic disease. I believe everyone has multiple turning points. We, as humans, have a long life expectancy and it’s crazy to think our lives will always remain status quo.

This is the story of my first major turning point in my life.

When I think back to the beginning of 2011, it all starts to make sense. I was always tired, taking naps almost every day and  going to bed around 8 at night after taking those long afternoon naps. I was in my last semester of college so I thought I was just tired from the amount of stress I was under trying to complete all of my graduation requirements while searching for a job. I didn’t think anything of it. Just kept on sleeping.

Then, in June of 2011, I moved to Northern Virginia for a job. I was still always tired. My co-worker, whose mother has diabetes, suggested I get checked out to make sure everything was ok. He said his mother had felt extremely tired before she was diagnosed. I laughed it off. Sure, there was a history of diabetes in my family but I didn’t think I could ever get the disease. I was young, healthy and totally naïve. But, I began to worry when I started falling asleep at work almost uncontrollably. I literally could not keep my eyes open during the day. I had picked up rock climbing when I moved to the area and went after work almost every day. By the end of August I never had the energy to do anything after work except nap. I still hadn’t correlated it to anything other than a lack of sleep.

Around the beginning of September, I started having really bad lower back pain. I would stay awake all night because I could never get comfortable enough or take enough medicine to ease the dull, achy throb in my back. When that pain moved to my lower stomach two weeks later, I started to think it was something more serious. Maybe a cyst on my ovaries or something worse. I found a general doctor in my area and made an appointment.

The doctor did her usual check-up. She asked where it hurt, did an exam, and got a urine sample. She said my ovaries felt fine. No cyst that she could feel. After testing my urine, she came back and said there was an elevated amount of sugar, which usually meant diabetes. And that was all she said. She told me I probably had a UTI (common for undiagnosed diabetics) and gave me antibiotics.

A week later, the pain was gone. I went to her office again for lab work just to make sure everything was ok. A few days later, I got a phone call.

Your fasting blood sugar is 417.

“Is that bad?” I asked. (Little did I know your fasting blood sugar should be below 100)

“Yeah. It’s not good. You have diabetes. From your test results, it looks to be Type 2 diabetes. Your thyroid levels are also very low, indicating hypothyroidism.”

Two chronic diseases in one day. Lucky me.

All I kept thinking in my head was, “Type 2 diabetes? What? How?”

I was healthy, active and young. I knew diabetes could happen at any age, but I didn’t fit any of the criteria for Type 2 diabetes. It just didn’t make any sense. I was confused, and in my confused state, I started to cry on the phone, at work. The nurse was clearly unsettled by my big heavy sobs. I was unsettled by my big heavy sobs. I had never cried like that in my entire life. I had never cried even a fraction of that at work.

The nurse kept trying to tell me that everything would be okay. That Type 2 diabetes is extremely manageable. That his grandfather had Type 2 diabetes and still had both his feet. I don’t know about you, but the last thing I needed to hear was that this man’s grandfather hadn’t lost his foot to diabetes. I was told to come into the doctor’s office as soon as possible.

A few days later, I was prescribed Metformin, a drug commonly used to treat Type 2 diabetes.

I wasn’t told to get a blood glucose meter.

I was told to stay away from sugar (when really, it’s the carbs that are cause for concern).

I was told that I could still get pregnant (and if you know me, you will know that getting pregnant is not even on my radar).

I was told that I probably wouldn’t lose my feet and that I probably wouldn’t go blind, but it was important to get eye exams and check feet for injury.

And that, my friends, was it. That’s all I got from this “doctor.” No second guessing the fact that I was losing weight, that I was well within the normal BMI for a 22 year old female, that I was active, that I rarely ate junk food (I have more of a chocolate and fro-yo addiction). Apparently she didn’t think a C-peptide test was necessary (test to show how much insulin your body is creating, therefore determining whether you are insulin resistant-Type 2- or insulin dependent-Type 1).

So, I took Metformin for about a week and a half. I had never felt better. I had more energy than I had in months and everything seemed great.

Until the end of that week and a half when I crashed.

It was one of the worst feelings in my life. I was always thirsty and always going to the bathroom. I could hardly walk from my desk at work to the bathroom down the hall without getting tired, so I dreaded the 10+ trips I had to make in an eight hour work day. I was falling asleep while driving. I couldn’t exercise because the sheer thought of that much movement made me tired. I dropped 15 pounds in two weeks to a weight I hadn’t seen since I was in middle school, even though I was eating more then usual. I knew something was wrong. It wasn’t until my Grandma, who has diabetes, tested my blood sugar with her meter (because I still didn’t have one). My number was in the 500s. She was so flustered, she tested again, saying that she must have done something wrong. The next reading said “Error.” That’s when I knew. I couldn’t help but break down and just cry. I wanted to get better and I had no idea what was going on with my body. I cried because I was scared. I cried because my doctor hadn’t fixed the problem. I cried because I wasn’t sure what else to do.

Monday, I made an appointment with an endocrinologist right away. When I first called, the receptionist told me she didn’t have any openings for almost a month. I simply told her my blood sugar was in the 500s and I needed help. She got me in two days later.

At that very first visit with my endo, Dr. A, she told me that my diagnosis was wrong. I was not Type 2. She assumed I was Type 1.5, which is Type 1 diabetes, essentially. It is an auto-immune disease (Type 2 is not) and since I was diagnosed with hypothyroidism (another auto-immune disease), my chances of having Type 1 diabetes was higher. The difference between Type 1.5 (LADA) and Type 1 is that I still have some functioning beta cells that are creating insulin, for the time being at least. My auto-immune system will eventually kill off all these beta cells and I’ll be completely dependent on insulin. Right now my beta cells have good days and bad (as evidenced by fluctuating blood sugars). Anyway, my endo ran a few more tests and told me we would know for sure once the results came back.

In the meantime, she gave me two blood glucose meters, taught me how to use them, told me how often I should be testing, etc. She took me off Metformin and put me on Amaryl ( an oral medication) and a low, 15 unit, dose of Lantus (insulin) in the morning. I learned how to give myself a shot (it took me a good five minutes in the office before I could actually poke myself) and was told that I was handling everything extremely well. Apparently most patients are upset and resistant to the news that they need to introduce insulin into their daily routine. I welcomed the compliment but only wished my doctor and nurses knew that inside I was panicking. Inside I was freaking out about everything. But ultimately I wanted to do what was going to make me feel better. It was at that point, needle poised inches away from my stomach that I knew my life was changing. Then the needle was in my stomach.

I continued on the low-carb diet I had adopted when I thought I was Type 2, because lower carb means less insulin need. I increased my exercise once I started feeling better, which happened about three or four days after starting on insulin. My numbers were still high. They were probably down in the 200s on average after about three weeks from the 400s and 500s. By the end of the first month with insulin I was in the 100s regularly.

To give you a number breakdown, a normal person has a fasting blood sugar of less than 90 (fasting blood sugar is when you don’t eat for 8 hours) and a blood sugar two hours post meal of less than 120. As a diabetic, my goal is to have a fasting of less than 100 and a two hour post meal reading of less than 140. Of course, if anyone knows me personally, they know that I try to stay within “normal people” numbers. It took about a month and a half for my numbers to stabilize. And when they did, I felt like a new person. I had more energy than I ever remembered having. But I still didn’t know what type of diabetes I had. The test results took nearly two months to come back.

I was officially diagnosed with Type 1.5 diabetes on December 6, 2011. It was a long road from September 14, 2011 when I was first diagnosed with Type 2 diabetes, but I’m just happy to be feeling better again. Right now, I know my blood sugar is easier to control because my body is still producing some insulin. But I know there will come a day where my 15 units won’t be enough. That will be the day I see some astronomically higher number on my meter. My doctor said that could happen in a month, five months, a year or even two from now. Sometimes I still don’t think I’ve necessarily grasped the idea that one day I will be completely dependent on insulin to live. If I think about the future and the long term, I get overwhelmed. If I start thinking about this chronic disease and how it’s never going to go away, I get really stressed out and emotional. So I try (try being the key word) not to think about it that way. One day at a time. All I can do is take it one step at a time. All anyone can ever do is take it one step at a time.

 “The mind is everything. What you think you become.”- Buddha

23 thoughts on “My Story

  1. Thanks for sharing. Diabetes also runs in my family; my mother was on insulin for most of her entire adult life. Stay strong and committed to the diet and exercise. I am certainly glad that you are feeling better now.

    • Thanks so much. I appreciate you taking the time to read and comment. I probably wouldn’t have utilized this blogging platform without you and all my blogging experience from undergrad 🙂

  2. Excellently written Liz (I feel bad saying that though due to the circumstances). I am really glad you put this out there, it’s been an awful experience/change I am sure. Reading through this all it makes me feel like I wasn’t there enough for you. Know that you can always call me for anything!

    This is only the beginning, sure, but I know you and know that you will make the best of it all and move on. With this under your belt and more energy restored to you, there’s nothing you can’t do.

    Sometimes these turning points could make your life even better, even in the moments that feel like the worst.

    Even in the darkest hour, there is light.

    • Thanks Brett! I’m glad you read it (and that you called me earlier to tell me you read it). You were totally there for me. Don’t feel like you weren’t. This was something, though, that I really had to deal with on my own. I have a great support system and have leaned on everybody, but I’ve always been independent and so dealing with this, I felt a bit like I had to become a recluse in order to cope with everything.

      I really appreciate your words of encouragement. You have no idea how much they mean to me. Seriously.

      And I agree, turning points can make your life better. I already feel like my diagnosis may lead to better things. Better diet, more exercise, more spiritual awareness. Those are some of the positives I’ve gained so far from all of this mess.

      You’re the best!

  3. Luz do sol, have I ever told you how wonderfully amazing I think you are? You have expressed yourself so clearly and eloquently that I can’t help but be moved. Remember in July when I told you how “you are an inspiration to me”? Thank you for being a part of my life. I look forward to reading more … so keep writing:) Love you bunches:)

  4. Wow I am truly impressed with your blog. It is one of the best written, if not the best, on the internet or internets if you are G. Bush. Keep it up and keep on going….Love You B. Bee!

  5. Oh, Liz. I love you. I think that reading your blog will help me cope with my newly discovered thyroid problem. It’s nice to read this because I don’t feel as scared.
    Thank you for being inspiring and sharing your struggles with the public.

    • I love you as well, Meggy Moo! I know it was tough finding out about the hypothyroidism, but I know you are strong and you have a great fiance and supportive friends and family who are all here for you. Once you get on a treatment, you will feel tons better. I promise. Also, I have a book for you. I’ll tell you about it when I talk to you later.
      As always, I’m here for you no matter what. Thanks for reading!

  6. Thank you so much for relating your story so well. Everything you talked about … the tiredness, falling asleep at work, driving, no energy, are all the same symptons I have had over the past year. I was going to various doctors who just kept repeating old prescriptions with no concern nor did they want to go further when i asked questions because I wasn’t feeling well. It took a move to another state, a friends suicide and a near breakdown that took me to a new doctor. Immediately tests were taken & I was diagnosed with Diabetes 2, and straight away put onto insulin. This has all happened in the last month. I’m very new to this and with starting my holidays this weekend I’m going to set up a blog. I have alot of weight to lose, start exercising, and track my blood sugar levels etc. I was really happy to find your blog and read what you’ve been through. Thank you so much for sharing!

    • I really appreciate you reading and commenting! And thank you for sharing your story with me. I’m so sorry to hear that you were ignored by so many doctors, especially when you know something isn’t right in your body.
      I know you are probably confused with a lot of questions. I’m still the same way after 3 months of diagnosis, but just know there are so many resources out there to help you.
      Check out the Diabetes Online Community for lots of diabetes related blogs, information and support. The DOC really helped me when I was first diagnosed and is a constant help in my day to day life.
      Just know that with some work, life style changes and time, you will be feeling so much better. Better than you have in a long time.
      Happy Holidays, and if you need anything, support, words of encouragement, advice, feel free to contact me.

  7. Great Post and thanks for sharing your story. I was also diagnosed with diabetes but not as a type 1 or 2. I don’t have any symptoms you experienced but I was also prescribed to take Metformin. I guess I’m just borderline since my blood sugar don’t go up to 200. Keep up the good work and will try to follow your blog.

    wrands
    http://www.justmyphoto.wordpress.com

  8. Thanks for sharing your story, Liz. I was also diagnosed at age 22–twinsies! I officially have type 1 diabetes, but your story has me questioning the difference between type 1 and type 1.5. I’m using an insulin pump, but my total daily dose is tiny and my pancreas still spits out some insulin from time to time. When I was taking Lantus, I was also taking just 15 units. Are you only taking Lantus for the time being?

    • Hey Nel! Thanks so much for reading and commenting! How long have you had diabetes and how long have you been pumping? The difference between 1 and 1.5, at least from how I understand it is pretty small. The biggest difference is that those who are diagnosed as Type 1 usually need to rely fully on insulin right away, whereas Type 1.5, you still produce insulin for a while. Currently, I’m still only taking Lantus in the morning. My daily injection has only gone up 1 unit, so I’m taking 16 units now. Other than that, I just watch what I eat and have pretty good control over my blood sugar. My doctor initially told me this “honeymoon” period would only last a couple months before I would have to add Humalog to my routine before meals, but I’m going on 10 months with the same routine.

      • Ok, that makes sense now. I was put on multiple daily injections right away and needed it. I guess the main difference is that “honeymoon” period. Type 1s have them, but they don’t last as long and we still need multiple injections or to pump–but that’s what you just said. 😉 I was diagnosed with diabetes in January and I’ve been pumping for a month. So far I love my insulin pump.

      • Oh wow… so you were just diagnosed! Glad you like pumping. I’ve read great things about it on all the blogs I read, but I have to admit I’m still a little intimidated by it. Were you shocked about your diagnosis? I know I was! Although, sometimes I think it was a great thing! I exercise all the time and eat a lot better than I did before diagnosis, so I think I’m probably healthier 🙂

  9. Yes and no. Type 1 diabetes runs in my family: I have a cousin who was diagnosed when he was 7 and I was 9, my uncle (his dad) was diagnosed at age 37, and another cousin was diagnosed last year. As a result, I knew the symptoms and I knew I wasn’t too old to develop the disease myself. But I don’t think anything could have completely prepared me for the diagnosis! I still have moments when I think, “When did this happen? Why do I need to check my sugar? This is weird!” Like you, I think I’m healthier now than before I was diagnosed. I think about what I eat a lot more and I’m exercising for the first time ever.

  10. Having worked with Liz for the last (almost) year I can tell you that I was unaware that she was a Diabetic until she told me a few months into working with one another. She manages it very well to the point where I literally was shocked when she told me because even I, who has a grandmother who is Diabetic, expected the day to day grind to take more of a toll than she shows.Not only is her story informative but I can tell you from working with her closely on a daily basis she is one of the most energetic, positive and enjoyable people I have ever met. Stories like this are very powerful and informative to general public like myself who are not as educated on this topic. I want to thank Liz for our friendship and sharing her story; she inspires me to try and be a better person everyday. We need more people like Liz in this world!

  11. Liz this is beautifully written! I’m so glad that you finally have things figured out (for the most part!) This sounds like an absolutely terrifying experience, and I’m so glad that you have come out of it on top! I’m going to work on reading your other posts, too 🙂

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