Talking Type 1: Lisa Smoke-Johnson

Type 1 diabetes is most commonly diagnosed in young children, but more and more adults are being diagnosed with it as well, presenting unique challenges. Lisa got type 1 diabetes after her first pregnancy – and was later inspired to help others by becoming a diabetes educator.

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Name: Lisa Smoke-Johnson

Age: 44 (diagnosed at age 20)

Location: Cabot, Ark.

I was 20 and pregnant with my first child in 1988, which led to gestational diabetes. I was told many women who have gestational diabetes would develop type 2 diabetes later in life. But I wasn’t too worried about the later part, as I was young and there was no history of diabetes in my family. I saw a dietitian during my pregnancy, stuck to a very strict diet and had a very healthy baby boy.

After my pregnancy, I started experiencing all of the typical symptoms of type 1 diabetes, but I contributed them to just having a baby. I had a dry mouth but had been told that an epidural would cause that; I wasn’t aware this should have disappeared within a few days. When my mouth was still dry six months later, I began to wonder why. I was drinking a lot of water, apple juice and whatever else I could get my hands on. My excessive urination didn’t alert me either—what goes in must come out. I was tired all the time, but I was up a lot during the night nursing a new baby. Because I was nursing, I was very hungry—but again, I thought this was normal. I lost almost 30 pounds in six months, but I believed it was the miracle of breast-feeding, which is known to burn a lot of calories.

When my son was six months old, I developed a vaginal yeast infection and made an appointment to see my OB/GYN. My urine sample was positive for glucose and ketones, and he referred me back to my primary care physician. I began testing my blood glucose levels weekly, all of which were over 225 mg/dl. I felt like I was doing everything I was told to do but still felt like a failure. My doctor gave me urine strips to test for ketones and told me to call if they turned purple. After calling the doctor every day, I went to see an endocrinologist and was sent straight to the hospital. I was in diabetic ketoacidosis (DKA) with an A1C of 17.5 percent—an emergency situation. I spent 10 days in the hospital learning all about diabetes, how to eat and how to give myself insulin injections.

I have seen a lot of changes in diabetes treatment in the past 25 years. I took a split-mixed dose of NPH and R insulin for eight years and then decided to go on a pump, which I’ve been using for 17 years. I had so many questions when I was first diagnosed. Nurses would just look at me, unable to explain diabetes, and doctors spoke to me in a way I couldn’t understand. As a young, uneducated girl from Arkansas, I thought, “There has got to be a better way.”

I decided to go to nursing school, learn all I could about diabetes and teach it in a way people could comprehend. I’ve been a nurse for 17 years now and a Certified Diabetes Educator (CDE) for the past two. It has become my passion in life: helping people with diabetes.

My patients are a reminder to myself that I have to live from my own advice. I struggle with weight and insulin resistance and understand how frustrating it can be. If I fail to do what I am teaching, then I am teaching hypocritically. I don’t believe in that.

One thing that strikes me about my story is how insurance paid for me to spend 10 days in the hospital to go through a diabetes education program 25 years ago. When people are diagnosed today, most of them receive a few booklets and are lucky to meet with a dietitian or educator. Even as a CDE myself, I still consult with a diabetes educator; there is always something new to learn. Every day, I see people who have had diabetes for years, some longer than me, and who have never had an opportunity to talk to anyone about their disease other than the few minutes they get with their doctor. I cannot imagine living with diabetes and not understanding it. It would be like driving a car blindfolded.

I hope my story can alert those with symptoms to have them checked instead of attributing them to some other cause, like I did. If someone with diabetes reads this, having never sat down with a diabetes educator, my wish is that they will seek out resources in their community and learn all they can. You never know whose lives you may impact in the process, in addition to your very own.

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20 Responses to Talking Type 1: Lisa Smoke-Johnson

  1. Stephanie says:

    my husband feels shaky every once in a while today he had an episode and checked his blood sugar (our 7yr old daughter has type 1) his blood sugar was 75 he is 34 is this something to worry about or have checked out?

    • Kaitlin Nadeau says:

      sounds like what happens to my mom a lot. I’m the only diabetic in my family. what was he doing? and was it after he had not eaten in a while??

  2. Kaitlin nadeau says:

    I’m 22 and was diagnosed with type 1 when I was 18. I work retail so my work hours go anyway. I can work 6-3 7-4 12-9 2-11 or even 4-11. I don’t make that much each week and most of my check goes to bills and I have to save the rest for food. The only problem is that it is cheap food, not very healthy. How can I eat healthy on a hectic schedule with little cash? It’s really starting to show on my a1c. It is 8.5. It was 12.5 when I was diagnosed. Any advice would be appreciated.

  3. Ray says:

    About six years ago at 55 I was diagnosed as a type 2 Diabetic and was placed on a variety of oral medications that didn’t do anything for me. The doctor then decided to remove me from the oral meds and started me on insulin only. I’ve been on several combinations since, 40 units of 75/25 in the morning and 20 at at night, 18 units ofHumalog with meals and Humalin sliding scale. Recent HA1c was at 11 and I can’t get it below 9. Like yourself the thirst is tremendous, and I am constantly urinating, a minimum of four or five times an hour that I have to now wear adult briefs. My urine also contains a spillage or sugar with moderate Ketones.
    My doctor did tell me that I was probably Diabetic for a very long time, and has me diagnosed and treated as a type two Diabetic, but personally, I just think that the long long time might have meant that I could actually be Type one and just maybe the right insulin could help me manage the disease.

    • Lisa Johnson says:

      Ray,
      Oh my….you have a LOT going on. Typically a person with Type 2 doesn’t spill ketones in the urine even with an A1c of 11%. I am not saying that it is not possible because every person is different, but I have seen many T2′s with A1c’s that high and higher and ketones are not usually present. Type 1 is different from Type 2 in that Type 1 is an auto-immune disease. This means that the body recognizes the beta cells on the pancreas that is responsible for making insulin and attacks and destroys these cells just like the immune system will attack and destroy an infection. There is a specific antibody that is present due to this auto-immune response called GAD antibodies. Only people who are Type 1 will test positive for GAD antibodies. Your doctor can order this test and it is really the only way to know for sure if it is T1 or T2. He can also order a C-Peptide, which tests how much insulin your body is making. But keep in mind that a person with T2 can have a low or non-existent C-peptide and be negative on the GAD antibodies and they are still a T2 even if they are insulin dependent. Regardless of whether it is T1 or T2, the important thing is to get your A1c down. Ask your doctor about the newer insulins that are on the market. 75/25 is not used as much now that newer long-acting (basal) insulins are available. Another option is an insulin pump, but you will need to work closely with your doctor to determine if that is an option for you. Just do whatever it takes to get the sugar down. I know it is frustrating, but it can be done. My A1c never got below 10% until after I went on a pump. It only took 6 months of pump therapy to get my A1c down from 10% to less than 7%. Whatever you do, don’t settle for an A1c higher than 7%. I do believe that with your commitment and an aggressive treatment plan of your doctor can make a HUGE difference in not only your long-term outcome, but you will feel so much better on a day to day basis.

      Be Persistent!
      Don’t Give Up!
      It Can be done!

  4. Sarah Antos says:

    My son was diagnosed when he was 15 almost 16 and he is now 20. I worry all the time because he is up and down with his blood. What worries me most is that he doesn’t want to do any activity for fear his blood sugar will drop. He use to play hockey , but now he doesn’t because no one has ever taught him a way to bring up the sugar so he can lift weights or do cardio. Is there a formula for this. What is the correct way? Please help.

    • Erica says:

      Sarah,

      I am a type 1 diabetic (have been for the last 10 years), but I’ve managed to balance an active lifestyle with diabetes. If I’m going to do cardio, I eat a small meal, decrease my insulin, and check my bg halfway in so I can adjust if needed. I always keep juice handy. When I got a new endo last year I made it very clear to him that an active lifestyle was important to me. He didn’t have a magic formula, which was disappointing, but every diabetic is different. You have to do a little trial and error and find what works for you. Hope this is helpful.

    • Kaitlin Nadeau says:

      I am 22. I have the pump and it makes having an active lifestyle manageable. I love to go camping swimming and biking and I live in Florida its hot down here. But having the pump makes it easier. I just suspend it while im doing any active activity and usually i do not drop. Plus I always have my trusty diabetes bag with me. It has my meter, a cereal bar, and lots of starburst for quickly needing to raise it if it falls. I try not to let my sugar get in the way of having fun. If he doesnt have the pump you guys should look into it. It is really cool and gives one more flexibility.

      • Lisa Johnson says:

        Sarah,
        I understand your concern for your son and as Erica and Kaitlin said in their responses, there really is no “magic” formula because every person is different. A pump can make a huge difference because it allows you to either stop the flow of insulin during activity or it can be put in a temporary rate that is lower than a full dose. Any person with diabetes who participates in activity should check their sugar prior to the activity and if below 100, eat a snack between 15-20 grams of carbs prior to the activity. But this will also depend on how intenst the work out is and for how long. This is why it is difficult to give direction here. I do like what Erica said about checking the sugar halfway through the workout and then again when done. One thing that works for me is to exercise 30 minutes after supper and cut my supper bolus in half and then let the activity keep the sugar from getting high. I would encourage your son to find what works for him but to not just give up on being active for fear of getting low. I love to go camping, swimming, hiking, and have even been on zip lines and ropes courses with my pump and been able to manage my sugar. I’m not saying it is easy, but my attitude is this: I may have diabetes, but it doesn’t have me!

  5. Sheree says:

    Your post strikes a cord with me as I was also diagnosed with gestational diabetes with my first pregnancy. However, I could not manage it with diet and had to go on insulin within 2 weeks of this diagnosis as I had lost 5 kilos during my pregnancy trying to maintain normal sugars. It took them a while to figure out my diagnosis as they initially told me it was type 2 post pregnancy but like you I was dropping weight rapidly, when they finally tested my c-peptide, I was given the correct diagnosis and finally taking off the oral meds that were not touching me and put on insulin…phew. Anyway what I wanted to ask is Do you think there is a link or have you ever been told or read there is a link between pregnancy hormones and type 1 diabetes development, i.e. the hormones being the trigger to starting the auto immune reaction that destroys the pancreas?

    • Lisa Johnson says:

      Sheree,
      You ask a great question, but I have not read any articles or been told that pregnancy hormones can lead to the development of T1 diabetes. However, pregnancy hormones, as well as other hormones (including ones that are prescribed), are insulin antagonists ….meaning they work against insulin. A non-diabetic person can be put on steroids and can develop steroid-induced diabetes that typically goes away once the steroids are tapered off. Typically with Type 1 there is a honeymoon period where the body is still making some insulin, but the insulin production is slowly diminishing. I personally believe that I may have been in a honeymoon state prior to becoming pregnant and the pregnancy put enough stress on my body (due to the increase in hormones) that I developed Type 1. But that is just my own theory. We may never know the answer, but the why is not as important as the day to day management.

      Best Wishes!

  6. Your comments have been the most informative I have read so far. I am just starting my journey with diabetes. I see my doctor tomorrow and am taking your article with me for guidance. I feel so lost. Where do I find a CDE? The ADA was helpful, but my symptoms are worse and I feel so alone. An ambulance came to my neighbor’s house a few months ago. I saw him outside with his dog and asked if he was OK. He said, “Diabetes can be rough”. Thank you for your article.

    • Lisa Johnson says:

      Ask your doctor if he can refer you to a CDE. You can also check to see if there are any diabetes education programs in your community. Sometimes these are offered through hospitals and you may even find a FREE CDE who visits your MD office. Another resource is the American Association of Diabetes Educators (AADE). Best Wishes!

  7. Thank you so much for sharing your story, my story is nearly identical to yours but for me it has only been 3 years now, my son is two and I thought no one else had experienced the same situation. Even today there was a lot of confusion surrounding my initial diagnosis. It’s always nice to hear I am not the only one!

  8. Lisa Johnson says:

    Reply to Stephanie: First of all, my heart goes out to you as a Mom with a T1 child, but kudos to you for staying on top of things. In regards to the question about your husband: Blood sugars are variable based on food intake, activity, sleep, stress, etc. This is true even for people without diabetes. The ADA defines diabetes as a fasting glucose of 126, a random glucose of 200 or above, or an A1c of 6.5% or greater. However, for a person without diabetes, “normal” is defined as a fasting blood sugar between 70 – 90, a random blood sugar less than 140, and an A1c less than 5.7%. Hypoglycemia is defined as a blood sugar of 70 or below. If his blood sugar is 75 and he has symptoms of low sugar, then it could be that his blood sugar may be dropping quickly. This can happen if he skips a meal and then engages in a lot of activity. Some people do have hypoglycemia and are not diabetic. This is because their pancreas secretes too much insulin when they eat. We typically recommend that they eat a consistent carb diet to level the blood sugars, but keep in mind that a glucose of 75 is considered normal. However, if he continues to have symptoms, it may be due to other issues and my rule of thumb is always “when in doubt….get it checked out.”

  9. Lisa Johnson says:

    Reply to Kaitlin: Getting your A1c down from 12.5% to 8.5% is good so please give yourself some credit for that. However, I do think you can do better and it may not be as expensive as you think. The ADA recommends an A1c 7% or less because research shows that this type of control can dramatically reduce risk for complications.

    The key for any person with diabetes is to have a consistent carb diet. Try to aim for 45 grams of carbs for each of your meals and limit your snacks to 15-20 grams of carbs (limit of 3 per day). When you prepare your plate, divide it into 3rds and put non-starchy veggies in the biggest portion. The other 2 parts of the plate should have a protein exchange on one side and a starch exchange on the other side. Fruit can raise glucose, so I would use it as a snack but make sure the portions are correct so that you don’t overdo it.

    Now, you may be thinking that fresh fruit and/or veggies are expensive, but you don’t have to spend money on fresh produce. To save money, go to the frozen section of the grocery store and pick up generic veggies and fruit. You will get the same nutritional value from the frozen as you do the fresh (more expensive) things. Another option is look for coupons on some of the name brand frozen or canned fruit and veggies. The nice thing about frozen fruit and veggies is that if you live alone, you only take out what you need for your meal so that none goes to waste. You can also find great deals on canned fruit and veggies, but let me warn you, the lower priced canned fruit is usually packed in corn syrup which can raise your sugar. Just drain it and rinse it before you eat it.

    A lot of people with diabetes think they need to go spend a fortune on “sugar free”, “lite”, or “no sugar added” food items. This is FALSE! Those items are very expensive and you can work in regular food items to your meal plan if you just read the label and count your carbs. If you have not learned how to do that, you need to learn it ASAP. Look at total carbs…this is the amount that is in one serving of food. Now look at the serving size. BE CAREFUL about “servings per container.” This has fooled me before. A lot of items are packaged in containers that have more than 1 serving, so if you grab a food item and it says that the serving size is 1 c. and total carbs are 12 g, but the servings per container are 2; if you plan to eat the entire container, then your total carbs is 24….not 12. Popcorn (3 cups), nuts, and low-fat (generic) cheese make great snacks.

    The best thing I can tell you is: read the labels and compare. Sometimes the more expensive items are not any better for you than the cheaper stuff. I recently found some ice-cream bars that have 16 g carbs per bar that were cheaper than the sugar free bars that had the same amount of carbs. A great resource to help you with carb counting and meal planning is cornerstones4care.com. You can find a books, recipes, and all kinds of resources there and it’s all FREE!
    Best Wishes!!

    • Kaitlin Nadeau says:

      Thank you. and yes those serving sizes are tricky and i usually stay away from sugar free stuff unless its jello or pudding. just cause its ‘sugar free’ doesn’t mean it is carb free. At work my manager is a selling machine she likes to tell every one about these multi grain crackers that are sugar free. I thought to myself there is no way so i went to look at the nutrition facts and it had 29g of carbs per 10 crackers. i try to tell her that anyone who is concerned about sugar is not going to look at the sugar but the carbs. I work in a deli and i try to help people who are looking for alternative foods and sometimes i get advice from my customers. i learn new stuff everyday and i didn’t know popcorn was a good snack that’s cool. Again thank you so much for the advice.

  10. Jessica says:

    I’m 29 years old and just 2 months ago (June 2012) I was diagnosed with diabetes. I was feeling all the same symptoms that everyone gets: thirsty, tired, and I lost about 25 pounds in the span of 2 months. At first I thought it was lyme disease – I live a pretty active lifestyle and like to take my dog on hikes. I had just gone to my doctor in February of 2012 and gotten a physical – at that time my sugar was 117 – which I was told was normal. When I wasn’t getting any better I went to my doctor in early June. She ran all the tests and called me the next day – my sugar was at 492. They haven’t confirmed yet if I am a type 1 or 2, but my endo thinks it’s type 1 since there were ketones found in my urine. Right now I’m on 1000g’s of metformin, 50g’s of jenuvia (which I’ve read online is for type 2 only) and 10mm a night of insulin.

    I have to say it’s been hard to grasp, trying to get my head around this. I was encouraged by my nutritionist (who is also a diabetic) to get a pump – but perhaps I’m being vain – I just find the thought of it so cumbersome and awkward.

    This article has been reassuring – as well as reading the accompanying posts. It’s nice to know that I’m not “at this alone”. Now that I’ve shared my back story – I do have a few questions. I’m 29 and before all this came about, my husband and I were going to start trying to have a baby early next year. How much will being a diabetic complicate things? Will I have to go on the insulin pump then? At my first A1C testing in June my number was 13. When I got it checked again last month it was already down to 11.5. Both my endo and gp have told me I should go ahead as planned with trying to get pregnant, but I’ve read online that diabetic mothers should have their numbers at around 6-7. And as a pregnant woman, how often would I have to check my BS? Right now I am doing it about 3-4 times a day.

    I guess I’m mostly just scared that there will be pregnancy complications and would like some advice.

  11. Sue says:

    Do you think there is a link between milk allergy and diabetes?
    My Mom passed away 3 years ago at 62 with pancreatic cancer. I’ve had type 1 diabetes for 24 years now – more than half my life. One of my blood tests showed severe low lipase – they said nothing about it to me as that may happen with diabetes? So I did some online research and read an article about familial low lipase that said lacking the hormone to break down the fats causes diabetes and pancreatic cancer.
    Anyway, I’ve never been able to control my blood sugars even with constant monitoring and doing the right thing. When I ran track, prior to the diabetes, I’d pass out. Now I can hardly mow my lawn without having chest pains and low blood sugars. I try to stay active so that I require less insulin but some things are just too difficult to keep my blood sugar up. I know walking really helps bring my blood sugars down.
    I’ve had very painful episodes of “gastroparesis” that have landed me in the hospital. Every day my stomach would hurt. . I also got to the point of vomiting the entire next day or heading to the ER, if I had pizza. Pizza, cheese, milk, ice cream were my favorites. As soon as I cut the dairy out, my blood sugars seemed to coincide with what I was doing, eating, exercising – they made sense for the first time in my life. My belly is much better, sure I’d love a piece of pizza; but I’m not going back to that.
    In addition to having the stomach problems I had chronic absesses on my butt cheeks. Painful and embarrassing. The doctors would tell me it was my blood sugars causing the absesses and a full circle the infection was causing the high blood sugars. When I cut out the dairy, my absesses went away too for the first time in 24 years.
    When I was pregnant I had 5 large absesses that had to be lasered. I’ve had well over 40 egg sized absesses over the course of my life, lanced or lasered. When I was an infant, I had a severe allergic reaction to they don’t know what – but they’ve never given me penicillan since then. I’m thinking all along, it’s been the dairy.
    My younger sister had to be on soy formula and one of my older brothers would project vomit for the first 2 years of his life.
    I’d be interested to see what you think about this.

  12. jfrazier says:

    Lisa,

    Please contact me, my work place is wanting to contact you about diabetes education. Jennifer Morrow referred you to us.

    Thank you,
    Jfrazier

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