Hello! Who are you? And tell us a little bit more about your diabetes.
After many years of poor self care and enduring many challenging diabetes complications, I am trying my hardest to take optimal care of my health. One of my biggest motivators is the blessing of my amazing 6 year old son.
I was diagnosed at 12 years old with diabetes type 1 just 3 days shy of Halloween. For the first couple of years my diabetes was under strict control by my mother. As I developed into my adolescence, I started to become more aware of my appearance and body image. Because of social pressures, media pressures and home pressure I soon developed an eating disorder that we, in the diabetic community, refer to as “diabulimia” (insulin omission to lose weight). As a result of my terrible addiction to not take insulin for weight loss I experienced many (at minimum about 20) hospitalized episodes of DKA. Accompanied by pancreatitis, intestinal paralysis and near death experiences. I spent most of my adolescence in the hospital, not knowing if I would be alive or dead.
My family and my medical team were desperate to help keep me alive. Eventually, by age 17, threatened to turn me into state custody for my self destructive behavior. That was when started to take better care of myself, but not as well as I should have. I began insulin pump therapy and simply wore the pump to keep myself alive and out of the hospital. I still wasn’t blousing for meals or testing my blood sugars. This continued through my 20s. By the time I reached age 27 I was diagnosed with macular edits/diabetic or retinopathy. I was going blind from poor diabetes control. I began laser treatments and injections in my eyes to prevent total vision loss. Because I still wasn’t taking care of my health properly the treatments were not too effective. In my later 20s I met my husband and I became pregnant. This is when my life changed forever. That is when I realized the importance of caring for my body. It wasn’t just about me anymore, it was also about the living being growing inside my body. Pregnancy with diabetes was very scary and I hadn’t realized how high risk it was for both me and baby. Thankfully, with the technology of a CGM, insulin pump and incredible support of a prestigious medical team, my son was born healthy. However, after my son was born, I was diagnosed with other diabetes related complications such as moderate neuropathy of the extremities, gastroparesis (partial paralysis of the intestinal tract which can make glucose management very challenging) and I have become hypoglycemic unaware (do not feel symptoms of low blood sugars). I also have an other autoimmune illnesses, which interferes with diabetes and can, at times, make daily living challenging.
With all the challenges I may face, I wake up each day and I push myself as hard as I can because I was blessed with the opportunity to be a mother. It is my job to serve as my son’s guide and light through his life path. My son has learned me so much about my self, life, the universe, connection, love, the importance of self care and the worth of fighting for life! That is why I believe I survived all those episodes of DKA, hospitalizations and near death experiences.
As a mother my self, I couldn’t imagine the emotional distress I put my mother through not knowing if her child would make it out of the hospital dead or alive.
“My family and my medical team were desperate to help keep me alive.”
How do you treat your diabetes, did a lot change over the past years and are you able to manage it well?
I have an incredible support from my family, wonderful friends and an amazing medical team. I also receive an absolutely amazing online support from the Instagram diabetes community. I have met some of my best friends plugging into the online diabetes community. It is so amazing and empowering to connect, share stories and exchange support.
To treat my diabetes I use an Omnipod insulin pump with Novolog insulin and a Dexcom CGM. I tried Humulin, Humalog and many different insulins before. I can’t remember all.
A lot has changed of the past years. Because of all of my health issues and the demand of eye injections I am no longer able to work. I follow up with my retina specialist every few weeks and if an injection is necessary it takes me several days to recover.
Diabetes is never a perfect science. That is why it’s diabetes. The body is forever changing and life is forever changing. I try my best to practice self care and manage my diabetes as well as I can. High blood glucose happens and low blood glucose happens, but with the support of a CGM I believe glucose control is much more manageable.
Can you recognize the symptoms of a low/high blood sugar? Do you test often and can you tell a bit more about your experiences with low blood sugar?
I can recognize my high blood sugars. I don’t feel any low blood sugar symptoms because I am hypoglycemic unaware. This is why my CGM is so important. For high blood sugars I get dehydrated, sleepy, experience headaches and can be moody.
I test several times per day to ensure that my CGM readings are accurate.
Typically I treat my low blood sugar with juice. However, because of the gastroparesis, it can take up to an hour for my low blood sugar to correct, which is very frustrating.
Thankfully I never fainted before due to a low blood sugar.
Food and diet
How does your diabetes affect your eating and do you find being on a diet restrictive?
I eat raw vegan. So much of my diet consists of strictly fruits and vegetables. I usually juice veggies as well, depending on how I feel with the gastroparesis. Sometimes I skip meals. I love it so much that I miss good old New York pizza. If I do snack, I eat fruits, veggies with hummus and stuff like that.
I bolus according to my carbohydrate intake. I try to avoid unhealthy foods at all costs.
With each meal I drink a half a liter bottle of water and try to not do it too close to bed time.
Being on a diet is not restrictive as I don’t believe in dieting. I prefer to encourage a healthy, conscious and intuitive way of eating.
Whenever people ask me about food I can or can’t eat I take it as an opportunity to educate people. Many people are undereducated.
Do you believe that a plant based diet can improve diabetes? Did you ever experiment with this?
I believe a plant based diet improves overall health.
Do you have a hard time eating out in a restaurant? And what are you thoughts on making this easier?
My biggest challenge eating out is plant based eating and because I have celiac disease. I have to be super cautious of cross contamination with gluten. I don’t find it too difficult though, because I live in New York and there are many restaurants that cater to these needs. I normally stick to my few go to places and target vegan restaurants.
“I don’t feel any low blood sugar symptoms because I am hypoglycemic unaware.”
Exercise and work
Does your diabetes restrict you from exercise or your daily job?
I try my best each day to exercise depending on how I feel.
I was formally a psychotherapist and social worker. Because the decline in my health, I no longer can work. I most definitely believe the stress levels that accompanied this line of work affected my diabetes greatly.
Do you have any positive or negative effects because of your diabetes?
The hardest part is the unpredictability of the disease and the complications I live with now, because of my poor past choices .
The positive part is that diabetes has taught me to appreciate my body, appreciate life and appreciate the beauty of the world around me. It has taught me pain, resilience, strength and has brought me close to so many people that I wouldn’t had the opportunity to meet otherwise. It has empowered me.
Diabetes has cause me secondary complications including gastroparesis, diabetic retinopathy, macular edema and neuropathy of the arms and legs. I also believe I experience diabetes burnout pretty frequently these days. It can be quite an exhausting disease to manage.
What is the best advice that you can give to non-diabetics, new diagnosed diabetics and diabetics?
Diabetes does not discriminate. Just because we look fine does not mean we aren’t fighting a silent battle each day. Diabetes is one of the leading killers in America and it is a serious disease that has become a serious epidemic.
There are so many amazing resources and supports available at your fingertips. Online communities especially.
It is much easier to take care of diabetes than to have to take care of it along with complications caused by it. It does not matter who you are, if you don’t manage your diabetes, complications will happen.
What would you ask the other diabetics?
How has diabetes changes your perspective of life and death?
Feel free to answer in the comments below.
Want to publish your own story?
Hey! I’m Ely Fornoville, the founder of Diabetic & Me.
We interview people with diabetes share the stories behind their lives.
By sharing these stories, we want to help others to understand life with diabetes.
If you liked this story, join our mailing list for new stories.
Interested in sharing your own story? Share your story with us!