I’m Em and I have Type 1 Diabetes

Meet EmI was diagnosed with diabetes on February 17th, 2016 at age 30.

It was clear I had Type 1, but my primary care doc didn’t know exactly how to handle the demanding woman on her exam table and prescribed Type 2 drugs while I waited to see an endocrinologist, who confirmed the obvious on March 1st.

Type 1 vs Type 2 Diabetes – There’s a Difference:

Type 1 diabetes is an autoimmune disease where my body decided to wage war on my pancreas, which lost that battle and is therefore no longer producing life-sustaining insulin.

Without insulin, cells cannot absorb sugar (glucose), which is needed to produce energy (hence the apathy and fatigue).

Therefore, Type 1 diabetics are insulin dependent, acting as mediocre substitutes for their MIA pancreas.

Type 2 diabetes, on the other hand, is a metabolic condition where your body becomes resistant to the insulin your pancreas is producing. As the condition worsens, your pancreas can produce less and less, leading to insulin deficiency.

How It Started for Me

My symptoms were fairly typical, but coincided with (and were likely triggered by) a stressful divorce.

Initially, I lost my appetite, dropped more than 20 pounds in the first month, and experienced extreme fatigue and apathy. That was in September 2015.

I chocked it all up to stress and continued on with life.

I continued on without much indication of the disease beyond dependence on strong coffee and wondering why minor scratches and bruises weren’t healing until February 2016.

This is when the insatiable thirst and vision loss kicked in and I became sullenly convinced that I had Type 1 diabetes, a condition typically diagnosed in childhood and affecting less than 1/2 percent of the U.S. population.

I obtained a fasting blood glucose test on February 12th which came back at 260.

Diabetes is confirmed with two fasting blood glucose tests over 126, or with just one test result freakishly higher than that, which is where most of us come in at by the time we realize what’s going on.

Conventional vs. “Alternative” Healthcare

I had naive faith in the ability of my golden healthcare plan resources to get my disease under control so that I could get my brain and body back.

The initial visit with my general practitioner was a little worrisome.

Specifically, my GP was unfamiliar with any of the labs that could easily confirm Type 1 over Type 2 diabetes, prescribed me Metformin and Victoza (drugs for Type 2), and there was never any discussion on the dangers of having Type 1.

I do understand that the vast majority of Type 1 diagnoses are given to children, so an adult practitioner might not be very familiar with the labs and treatment protocols.

The visit with the endocrinologist caused me great concern. 

This costly visit lasted all of five minutes. The “specialist” shared the obvious, that my labs confirmed Type 1 diabetes, and then she indicated I would need to make an appointment with the diabetes educator.

I tried to go through the long list of questions that had come up during my personal research and was waved off with brief, unhelpful replies. I asked for several labs to be ordered and was told they were unnecessary. That was it.

The “diabetes educator” was the final nail in the conventional healthcare coffin. 

I booked an hour with the diabetes educator, read the entire 100+ page diabetes text they had given me at my GP’s office, and came prepared with dozens of questions and a lot of trepidation around starting insulin injections.

30 minutes of my appointment was used up by this nurse running around gathering samples into a bag. Then, despite informing her that I had read the text and done my own research, she started off by pulling out a diagram similar to this one:

diabetes

The entire visit was a waste of time and I walked out of the pharmacy with my “free” insulin starter kits (Toujeo for my long-acting and Novolog pens for my rapid mealtime insulin) with the following treatment plan:

  1. Inject 9 units of long-acting insulin (Toujeo) every morning.
  2. Inject 3 units of rapid insulin (Novolog) before every meal.
  3. Repeat every day.

The Roller Coaster Begins

As logic might indicate, a functioning pancreas doesn’t dump out the same amount of insulin every meal with complete disregard for the total carbs and protein consumed.

So, why would we dose this way?

I struggled every single day, with blood glucose levels ranging from 42 to 200 mg/dl. 

I nearly passed out at a friend’s house less than a week after diagnosis and had no idea how to handle the situation. I “treated” the low with orange juice, which is silly.

I then actually passed out at home alone, hitting my head on the kitchen counter as I was trying to operate my glucometer.

Liberation

I am fortunate that one of my clients is an Integrative Cancer Care Doctor. She immediately referred me to Dr. Mona Morstein, a Naturopathic Doctor based in Tempe, Arizona.

I made an appointment and booked the flights, recognizing that my health was out of control and would eventually get the best of me. No cost was too high.

On April 1st, I furiously scribbled notes as Dr. Morstein fire hosed me with her expertise. I was astounded (and angry) at just how much was left out of my initial appointments that would drastically improve my immediate health and long-term outcomes.

There were dozens of critical bits of information that I will be sharing in coming blog posts, but ultimately, the key to getting this beast under control was diet.

As a Type 1 Diabetic, I no longer have the metabolic capability to process sugar and other carbohydrates. This means that I need a very low carb diet. 

I was already down to less than 90 net carbs before the appointment based on my own research. I further changed my diet after that appointment to consume 12 grams of carbs or less per meal.

I immediately dropped from 11 units of Toujeo in the morning to 4. I also went from 3 units of Novolog before meals to an average of 1 unit, sometimes struggling because I only need a half unit and I haven’t put together a half unit dosing system yet.

My vision was fully restored. My energy came back in droves. The brain fog disappeared.

I feel better now than I did even before my pancreas threw in the towel, which is important to me.

There’s too much at stake to live with constant diabetes symptoms, complications, and the roller coaster of highs and lows. 

Welcome

This blog exists because I refuse to sacrifice my life plans to accommodate my diabetes.

Because I refuse to sacrifice flavor and texture and crunch.

Because I refuse to give up on my body, adventures, and gourmet cooking and baking.

Type 1 Rockstar is about managing my diet, exercise and lifestyle so that I continue to feel great and play hard.

Welcome aboard! I hope you get something positive out of this journal of discovery, experiments, and results.

12 Comments
  1. wow….. I’m shocked that this was your experience in 2016! I was diagnosed in 2001 (at the age of 10) and was luckily referred to a brilliant doctor almost immediately (I was born and raised in South Africa but I live in Thailand now). I think this is why all diabetics feel the need to be advocates – there is so much misinformation out there (especially among doctors), we have to look out for each other 🙂 Despite being diagnosed quickly ad efficiently, I have still had a rollercoaster ride over the years but being in contact with diabetics all over the world helps a lot. I think all Type 1 diabetics learn more from each other than they do from any medical professionals… I love your blog and recipes – keep up the awesome advocacy.

    1. Thank you for your wonderful comment! Sorry for the delay in responding – I was actually in Thailand myself and my phone did not want to login to Disqus from abroad! A bit jealous that you’re living there – I really enjoyed Krabi and the southern coast so much. And, yes, so so much misinformation. I find myself wondering how many Type 1’s have had devastating reactions to some of the “medical guidance” out there on WebMD and other horrifyingly inaccurate sites. So glad you had a good doctor and are out supporting and learning from other Type 1’s!

  2. Hi Em, I ran into your story by looking at some of your delicious recipes. My story is very similar to yours, except I still don’t have a confirmation on Type 1. I was diagnosed with Type 2 couple of weeks ago and I was prescribed Metformin without even getting an appointment with a specialist. The doctor looked a little bit clueless about what to do with me ( fasting sugar around 300 mg/dl at the age of 27 and BMI of 18) and she couldn’t tell which type I was. So, she decided it was Type 2. Of course, I have a very hard time accepting it without seeing a specialist and I will request one during my next visit (in two weeks). I saw in your blog that you were prescribed Metformin initially, so I really wanted to ask you whether the medication worked for you initially (or you knew it was Type 1, right away?). I am really trying hard to stay calm, but this waiting period is killing me (literally).
    Thank you for the great blog and great spirit! It really helped me!

    1. Ana! I’m so sorry you’re going through this. Hold on, this part of the ride is crazy.

      It sounds like you are Type 1. A couple very simple labs need to be taken to confirm (autoantibodies tests). Since Type 2 is a metabolic disorder and not an autoimmune process like Type 1, the autoantibodies tests clearly differentiate which type you are. Any doc could order one or more of these labs, but general practitioners don’t know what they’re doing when it comes to Type 1 in adults. I insisted on these labs with my GP and she insisted I wait for an appt with the endocrinologist. As soon as I had that appt booked, they promptly ordered the same labs I had requested. I then paid around $300 to see said endocrinologist simply for her to confirm Type 1 and walk out of the room.

      Hopefully you have a better experience, but it sounds like you are in for the same terrible “health” care that I got. If you can, find an ND (naturopathic doctor) in your area that specializes in diabetes. If you can’t find one and can swing it, make an appt with Dr. Mona Morstein in Tempe, AZ and book a flight. Your health is important and getting accurate information and a game plan for your diabetes that actually works is going to have a HUGE impact on the rest of your life.

      I am going to get a summary of my first visit with Dr. Morstein posted by tomorrow since I think it would be helpful for you. Be sure to subscribe so it pops into your inbox. Good luck! Feel free to reach out with any questions!

  3. Hi Em!

    your story is pretty much the same as mine, although I didn’t have to fly out of state to find a good endocrinologist. Diagnosed at the age of 30, just like you, 7 months after my first signs (that my GP kept ignoring, telling me I WANTED some kind of disease when I suggested it might be T1 diabetes???).
    I think you are very brave and for a person who has had T1 diabetes for no longer than 4 months, you are a true rockstar! Hang in there!

    Cathy

    1. Thank you, Cathy!! It’s frustrating to hear that your GP was also unaware and less than responsive to your symptoms. My GP definitely gave me this look like I was a hypochondriac who had diagnosed herself on WebMD and was completely nuts. The last two might be true, but my self-diagnosis was spot on (and obvious given the symptoms, just not the age). It’s such an intense lifelong commitment. I hope you are doing well!

  4. I truly had no idea what it was like to live with diabetes. Thank you for educating me in great detail.

    1. Thanks for taking the time to get a sense of what it’s like, Nadia! Awareness is so helpful among friends and colleagues 🙂

  5. Very excited to see this project launch! I love the very detailed explanation here. Keep it up and I know you’ll help lots of people.

    Now you just need your team of roadies and M&Ms! (sugar-free, of course.)

    1. Thank you, Chris! This blog wouldn’t exist if I hadn’t been reading Born For This when several signs pointed to me back toward what I love to do!

  6. Great explanation of the two types and of why you structure your nutrition as you do now. It makes so much sense. I think this blog will be so helpful to everyone wanting to eat healthier.

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