Diabetic Connect's Voices of Diabetes series gives members of the diabetes community the opportunity to share their personal challenges, insights, and life experiences with a larger audience. We hope these stories inspire and encourage you to find your own voice as a diabetes advocate. If you would like to share your story, contact us at firstname.lastname@example.org. Visit the Voices of Diabetes page on Diabetic Connect for more in the series.
Lizmari Collazo spent two years struggling with the symptoms of undiagnosed type 2 diabetes before a nurse tested her on a hunch. The results were undeniable. Her fasting blood work was 235 mg/dL and her A1c was 10.5. Lizmari knew then without a doubt what other doctors had missed: she had diabetes.
Lizmari dedicates her efforts now to helping others through her blog, The Angry Type 2 Diabetic. Lizmari writes about the need for stopping the blame games, the seriousness of the disease, and the need for proper care and for finding resources for the needy, especially those without insurance.
We love her passionate, no-holds-barred take on personal and broader challenges of living with diabetes.
Q: Tell us how your diabetes story began. When were you diagnosed? How did you react?
It’s hard to pinpoint when my story began. I know the day when I got my diagnosis, but my symptoms and my journey toward that diagnosis began almost exactly three years earlier. I was in a stressful place of employment, and one day in 2006, I began feeling unwell. I had some heart palpitations, so I went to my primary care provider with the concerns. They took some basic labs and sent me to the local hospital for a stress test. The test turned out fine, but, looking back on the actual blood tests…the fasting blood test was NOT so fine. It’s just that no one told me anything about it. It was 143 mg/dL.
Throughout those years, I struggled greatly with my health. I went through a period of deep clinical depression and anxiety and was placed on a variety of medications which caused me to gain massive weight, even though I wouldn’t eat and wouldn’t sleep. At another medication change, I was told I developed fatty liver (with no context as to why I had developed it, or what I could do to make it better), lost around 30 or 40 lbs, had a seizure at my desk, and was fired from my employer (I had exhausted my Family Medical Leave, and my employer was both tired of my health issues, and gung-ho on cutting positions.). I really had lost much of my motivation for life. One day, I felt so unwell, my husband asked me to just test my blood sugar with a meter he had. It registered a 150, and it had been 3 hours since I had eaten. I decided to go speak with a doctor at a local volunteer clinic, for the uninsured, but again, I was told I was fine. Within the following four months, I developed blurry vision, a major abscess that required emergency treatment, major migraines, sleep apnea, extreme thirst, frequent urination, and chronic yeast infections.
The chronic yeast infections were the worst! It was probably by my fourth visit to Planned Parenthood that the head nurse got a hunch to test my urine for glucose. She came back, pale and fearful, and told me I had a lot of glucose in my urine and that I needed to get some further tests and see a doctor. I paid quite a bit of money I didn’t have at the time out of pocket for those tests. The date was November 17, 2009. I had just turned 33 years old on November 11. The fasting blood work was 235 mg/dL. The A1c was 10.5 percent. I knew then, without a doubt that I had diabetes. I recall the doctor at the free clinic was still not so sure! The doctor kept asking me if I was sure I had seen other 200s in my testing, and if I was sure I had fasted for the tests. She looked at the American Diabetes Association website to see what she could learn and what I could do. It was all, very shocking. I remember my dad’s life and death flashed before my eyes. I felt very angry and betrayed.
Q: What was the impetus for the blog? What do you see as its main purpose?
The impetus for the blog was my friends. Post-diagnosis I took a lot of time to learn as much as I could about diabetes. I felt I had the upper hand in our current age of technology, so I joined forums and took advantage of not having a job to immerse myself in as much knowledge as I could. I felt that I needed to take advantage of my youth in order to make as many changes as I could and learn as much as I could with the least amount of pain possible. In the process, I’ve been able to help many, many people with their questions and concerns, regardless of their diabetes type.
Many of my friends, who have gone through similar experiences of medical neglect or misdiagnosis started urging me to take my knowledge, my writing, and my emotions and turn them into a blog. I never really wanted to blog, but by the time I got the fifth letter from completely unrelated persons asking me to blog, well, I took it as a sign. I consider the blog’s main purpose to simply be the shedding light on the realities of type 2 diabetes and diabetes in general, as well as processing some of my own emotions and frustrations of living with chronic illness and its social aspects.
Q: Your blog has an interesting title: “The Angry Type 2 Diabetic.” Why angry?
Type 2 diabetes just brings a lot of anger into people’s lives. Anger at medical staff, the diagnosis, media misinformation, ourselves, and at the blame games from family, friends, and other diabetics. There’s a LOT of blame against Type 2 diabetics out there, even within our own diabetes community. As a newly diagnosed Type 2 diabetic, I found a lot of support from others in forums, as well as a lot of persecution and blame. I tend to be both a reactive and proactive person, sometimes to my own detriment. The blog name is both a way to accept my own anger issues, as well as to show there is an undercurrent of anger comes with the condition and its misconceptions.
Q: You call this a “misunderstood disease” on your blog. If you had to pick three things you want people to better understand, what would they be?
It’s difficult to pick just three, but I would say the top three are:
The blame games are irrelevant. Regardless of what illness a person has or may develop we are all in the process of just living (and all that that entails) when we got it. We are all persons deserving of humanity, empathy, care, and support.
The roads to Type 2 diabetes are many. Someone doesn't need to be overweight to develop Type 2 diabetes, nor does one need to overeat to become obese. There are many triggers, illnesses, medications, environmental conditions, and genetic propensities that so greatly contribute to the development of these conditions that it would be very hard to pinpoint in any one person an “exclusive” trigger, even when obesity is present. Obesity is just another factor, or trigger; not a cause. A cause is, as of yet, unknown. Weight loss just helps us “reduce a risk,” not really prevent it.
Diabetes is as much a psychosocial illness as it is a physical illness. It affects entire families, friendships, employers and relationships. It can lead to very complex self-feelings, and other illnesses such as depression and eating disorders. It can bear a great psychological weight. It is not just an “inconvenience” for those who commit to managing it aggressively.
Q: You’ve also dealt with other chronic health conditions. How do you manage these multiple conditions?
I was diagnosed with hypothyroidism and polycystic ovarian syndrome (PCOS) at 15 after presenting symptoms for many, many years. I manage hypothyroidism with replacement thyroxine medication (Levothyroxine), or I quickly become moody, lethargic, and unable to focus. I am severely hypothyroid. Some symptoms have become lessened with medication but have not entirely gone away, like being vulnerable to cold temperatures, dry skin, and hair. I try to keep extra blankets, socks and other items around for when I get too cold. I must also take the medication without any food to prevent disrupting hormonal absorption.
PCOS is a bit more challenging to manage and requires I follow a low-carb diet due to its attendant hyperinsulinemia. Without care, I can gain a lot of weight if I don’t manage my carbohydrates with some strictness (and sometimes do, anyway), and it often complicates my diabetes, because it can cause me to have hypoglycemic episodes, especially if I am being physically active or if the temperature is very cold outside. I take birth control pills, which make sure that the cysts in my ovaries are “burned” and do not grow out of hand, crushing my ovaries. Without them, I can’t have a period or ovulate, and they control the excess androgens produced by my body. PCOS has caused me to lose a lot of hair, while at the same time giving me a lot of facial hair. I fondly call it, “The disease that’s trying to turn me into a man.” With weight loss, it becomes easier to manage, but weight loss with this condition is a very big challenge.
Q: How did watching your dad’s battle with diabetes affect your approach to managing your own diabetes and the condition in general?
My dad’s battle with diabetes gave me a profound understanding of some of the realities of this disease that may be hard for others to grasp. In a span of 20 years, I saw my own father go from managing diabetes with no medications, to many medications, to just insulin, to many complications, kidney failure, and dying at the operating table while awaiting an amputation. I know firsthand that he took care of himself. I know firsthand what diabetes can do, and how fast it can progress. I saw some of his mistakes as fighting the need to be on medications and insulin for so long, without much help from his medical team because he believed many of the misconceptions about treatments out there. Also, it has helped me understand that great care does not prevent complications; it just reduces the risk for them. Genetics plays a role, so I am always on alert, and test often, because I don’t want to be caught off guard. It has led me to some burnout and some psychological duress, at times. More personally, I don’t have it in me to dismiss anyone who comes to me with stories about their relative, parent or grandparent who passed on from the condition, because I can understand how important talking about such an event with those who get it can be. It might scare me – but I know it has scared them, too, and quite shockingly. It’s not easy seeing the strong people in our lives in such vulnerable positions.
Q: How has your relationship with food changed since your diagnosis?
Food is a difficult bear for me to manage. I have an eating disorder, which I developed from years of being harassed by my loving mother about my weight and polycystic ovarian issues. I must eat lower carb (for the sake of PCOS), but I must not make myself very many rules. I practice some intuitive eating, with some lower carbohydrate adjustments. Intuitive eating basically means that I strive to be aware of myself, at all times, and what my body wants. If it truly is physically hungry, if a meal has satisfied me, if it was what I really wanted to eat, etc. It has allowed me to make healthier eating choices and lose significant weight (close to 80 lbs). I was eating a lot of food I didn’t even like. Now, I allow myself scheduled treats, and sometimes make lower carb versions of foods I love. We often turn eating into “dogma,” and that can hurt us as well as our relationships with others, or our empathy for others. So, I try to stay away from that and accept how others have chosen to care for their diabetes as well as practice my own way. I really am anti-dieting, though. Dieting often does not ingrain permanent life changes and puts the person into a ‘passenger’ mode in their own health journey, instead of in the driver mode.
Q: What do you feel is the biggest challenge for people with type 2 diabetes today?
I believe the biggest challenge right now for us is garnering the true acknowledgement of the medical community and health insurance communities of the seriousness of this disease. Patients are too often going misdiagnosed for years and developing complications, not receiving education when diagnosed or receiving misinformation, denied appropriate testing supplies or tools, denied access to insulin or denied access to specialists or other figures who can provide education, like CDEs or RDs. Patients are often led to believe they can just exercise or diet their diabetes away, or are promised gastric bypass surgery (a surgery with limited successes, and high risks) like it’s the “Promised Land.” A fellow Type 2 diabetic once complained to me that her insurance would not cover a dietitian or a certified diabetes educator, but it would gladly pay for gastric bypass! She had to go her own health journey, alone. This is a common story in our community - the daily bread of having Type 2 diabetes. Our medical community is very seriously misinformed and uneducated, and seems to not recognize it. Instead, the patient often gets blamed for the lack of progress.
Q: What advice would you give someone who has just been diagnosed with type 2 diabetes?
I would say, it’s OK to feel the way you do. It’s okay to be angry, or sad, or scared…or even guilty. Those emotions are normal. Take your journey one step at a time, one meal at a time, and use your glucose meter as much as possible. Test, test, test. It will tell you almost everything you need to know. Read when you can and learn a little at a time. But don’t rush yourself. Chronic illness is a marathon, not a sprint. Diabetes is no different. Find community – folks who can support you, and hear you, and not judge you for your struggles. You are not alone.
Q: Parting words:
Diabetes has been an incredible eye opener in my life. Not just of simple things, like my eating habits, but of the great truth that we are vulnerable human beings, and that I must take care of my health and make it a priority. It has shined a light on even my personal relationships with friends and family – shown me who my real friends and loved ones are and how much I will deeply hurt and scar them if I don’t at least do my best to fight back. Diabetes can either be the worst or the best thing that has happened to me. It’s all in how I channel my vision, my emotions and how I play my cards. Play well, while you have the upper hand, and you can live very well with diabetes. Make the most of your time.