One of the biggest challenges in my life has been to accept that I have diabetes. I have had diabetes for 19 years. Most of that time was spent in denial or fear, other years anger and rebellion. Today, with the support of my family and faith I can say I have accepted my diabetes. I do not fear diabetes. Let me start by saying, I don’t have all the answers and I certainly don’t claim to be perfect, or a model type 1 diabetic. But my experience and my desire to help others has brought me to this point. I hope in sharing my story I can help or encourage just one person who may be struggling as I did.
I was diagnosed with Type 1 diabetes at 16 years old. Although not in the way most are diagnosed. In October of 1995, I was taking my horse out to let him run in the arena. He was acting very anxious which for this horse wasn’t particularly unusual. He spooked at something, spun around kicked me in the ribs and kidney, launched me into the air and took off down the road. I was laying on the dirt in a daze and couldn’t yell for help because he had kicked me so hard it had knocked the wind out of me. My neighbor happened to be out on her horse too she saw my horse running down the road without his rider and corralled him back on to the property where she found me. She asked me if anyone was home and all I could do was shake my head yes still unable to speak or get up. My sister was in the house, as she rode up to the front door and yelled for her to call 9-1-1. When the paramedics arrived I just remember feeling embarrassed that I let my horse get the better of me. On the way to the hospital I remember thinking “oh great I have a broken rib”. Little did I know there was much more to come.
If you have ever entered into an emergency room via an ambulance then you know the medical staff runs every test and checks everything imaginable just to be sure everything is okay. The ER nurse was very careful with me as she stuck my finger for the first time ever and I remember that hurting more than my ribs. She said “hmm must be something wrong with my machine its not reading” I had no idea what that meant nor did I care. Had I known it meant she had to stick me again I would have cared a little more. So off she went to find another meter and when she repeated the test again the meter still had no reading. Apparently the hospitals meters only registered at 500 or below. She finally consulted the ER doctor who recommended a urine stick test. As my luck would have it my blood glucose was over 600 and they were all shocked I was not in a coma. They kept coming in and asking me if I was a diabetic, and I kept saying no, I’m here because my horse kicked me. I was thinking to myself in my know-it-all 16 year old attitude, don’t you people read the patient charts? As the night wore on, the hospital decided they wanted to keep me to do further testing that had nothing to do with my horse injury. I was furious and didn’t believe what they were telling me. I was also scared and ashamed and I made my mother swear not to call my father because I didn’t want him to think differently of me or be angry that I might have this thing called diabetes. My father would not have been either but in my 16 year old head I didn’t want anyone to know what the ER staff was telling me. I just wanted out of there I couldn’t bear to hear them say that word anymore or ask me any more questions. So after pleading and crying to my mother who is a nurse we AMA’d (against medical advice) out of the hospital and went home. No broken bones, just bruised rib, kidney and ego. The next day she took me to get blood work done and our worst fear was confirmed; I had Type 1 diabetes. My mom of course blamed herself for not seeing the signs but I never thought there was anything wrong with me so I never went to her. I didn’t know weighing 89 pounds soaking wet was a bad thing at 16. Or that having to pee every 10 minutes wasn’t normal. She said she felt like she had been punched with an anvil. If she had been punched with an anvil I had been punched, kicked and poked and I couldn’t tell you by what but I think an anvil would have been welcomed.
A week later I was at Cedar Sinai in Santa Monica being seen by an endocrinologist and my life was changed forever. Blood glucose meters, vials of insulin, needles, daily log books, meter supplies etc.. all shoved in my face. A book of things I could and could not eat, what to do when you get sick, what to do when playing sports; it was all so much. I was at a lost, how was I supposed to erase the previous 16 years of birthday cakes, and Halloween candy? What would my family and friends think? My sister Hannah who always wanted to copy me wouldn’t want to do that now. My little brother Kohl and my littlest sister Kaycee thought I was kind of cool wouldn’t think I was cool anymore. Was this going to change my life plan of wanting to join the military? Which is all I wanted to do. Incidentally it did, I was not able to join in any capacity, my dad even offered to sign a letter stating the military would not be held responsible if something happened to me due to my diabetes. It didn’t matter I was turned down as they cited I wouldn’t pass any medical physical necessary to join. How was I supposed to process all this? Diabetes was slowly destroying everything in my life, that’s what I believed and that fueled more anger and more rebellion.
The day of my first endocrinologist appointment is a day I will never forgot. My mom worked in the same medical building so I went to work with her and we both went to my appointment. So many different emotions I remember for that day, anger, fear, and resentment. I remember my dad drove down to meet me at the office, to take me home. He was very quiet and tried very hard to understand all of it. He has a way of offering comfort without really saying much and I remember feeling relieved that it was quiet because I sure did not want to talk about it. I remember on the way home we stopped at McDonald’s which is odd to start with because he typically doesn’t eat food like that. I ordered my usual chicken nuggets but when the lady behind the counter asked me what kind of sauce I wanted I didn’t know what to say. I was paralyzed with embaressment and I didn’t know what to say. I had always ordered sweet and sour sauce but just that word “sweet”; I felt like I wasn’t allowed to say anymore. I finally answered ” no sauce”. Ever had a nugget with no sauce? It doesn’t taste as good. That first encounter was so insightful to both of us and for me represented change I did not want and wasn’t ready for. My dad never really told me how he felt about the diagnosis but I knew mostly he just wanted to assure me it would be OK. Even though a thousand chicken nuggets with sweet and sour sauce wouldn’t have been able to convince me it was going to be OK.
Over the next few months my family and I went through basic diabetic boot camp. The do’s and dont’s, mostly what not to eat and how often to check my sugar. The two kinds of insulin, when to take them and how much. Learning how to use a sliding scale, and how to make corrections. Of course the hard part were the injections and for the first few months my mom had to do them and I wouldn’t let her do it in my stomach only in my thigh. When I was finally brave enough I took over the injections but still only in the thigh for a long, long time. At some point a dietitian came to the house to give instructions on the “exchange diet”. Now, I am not skinny by any means but at 16 when your dietitian shows up and is 300 pounds you tend not take them seriously. My mom and I tried to wrap our heads around eating this and exchange for that and on and on. But no matter how we did it my sugar was always very high. Of course later figuring out that is the worst possible “diet” for a newly diagnosed diabetic and quite frankly in my opinion outdated and not accurate. Then the changes at school having to let all my teachers know, and going to the nurses office to check my sugar and possibly an injection at lunch. That was the worst! I felt like everyone knew there was something wrong with me and I was being judged for it. Again, in my head, at 16 years old I knew it all.
I was so angry at everyone and everything and rebellious against anything to do with diabetes. It didn’t matter the horror pictures I was shown of what would happen if I didn’t take care of myself. I was not going to change anything about myself for my diabetes. I look back today and think if I only I had tried just a little. Support groups were not anything I wanted a part of, to think people sat around and talked about having diabetes. No thank you! How could a group help me? I wish now I would have been a part of one. I know I did irreversible damage to myself in that time period and I have NLD (necrobiosis lipoidica diabeticorum) on my legs to prove it. Side note there are several schools of thought on NLD as relating to uncontrolled blood glucose or not, but for me I am convinced it is due to my several years of uncontrolled blood sugars.
At 18 years old I moved to Texas along with my family. Now in a new place, I didn’t want to share with anyone I had diabetes I was so embarrassed and ashamed. I was determined it wasn’t going to stop me from doing anything I wanted to do. I still hated everything about diabetes and wanted nothing to do with it. I had several trips to the hospital suffering from DKA (diabetes keto acidiosis) at one point I was so dehydrated the nurses couldn’t get any blood from my arms or feet so the doctor was convinced I needed to have a central line placed into my neck. Ever had the feeling where you know you are not a doctor but something just doesn’t feel right? Well this was one of those times. Fortunately my dad felt the same way so by letting him take the lead I was thankfully transported to another hospital where they did not want to put a central line in my neck. This was the first of many signs in learning to take my medical issues into my own hands and speak up when something didn’t feel right. I was in the hospital several times throughout the years for DKA and I would lie to myself and say I just need my “reset” button pushed. And once properly hydrated, blood sugar back under control and a few days of rest I went out into the world again ignoring and rebelling everything about my diabetes.
As years went by I struggled with a plethora of issues related to diabetes; thyroid problems, weight problems etc. Being overweight was extremely hard for me and trying to exercise and not getting any results was even harder. I hated myself for having diabetes now I hated myself due to my weight. I started to get lazy with giving myself insulin which led me to figure out that lack of insulin makes you loose weight. I was diabellimic before I even knew there was a word for it. Figuring out that insulin restriction allowed me to loose weight made me feel like I was on cloud 9. Finally something I could control with “good results”. I didn’t care that long periods of high blood sugar was going to ruin my heart, kidneys, etc.. The scary stuff didn’t matter to me, I was skinny and in control! My family and friends would compliment me and say “gee look how good she looks she must be doing something right”. Wasn’t I? I didn’t even hear the term diabeliuma until several years later, I was listening to the radio and a doctor came on to speak how this new term “diabelliuma” mostly affected women and the dangers involved. Was he talking to me? Nope fingers inserted into ears and I said la la la.
Angels and Demons…
I returned to California when I was 28 years old. All of my family stayed in Texas so for the first time I was truly all alone. The demons of my life started to confront me and I had no where to go to escape. I had an appointment to meet with my new endocrinologist and I wasn’t looking forward to it. My A1c revealed to him what I didn’t want to say. My A1c was 16, but he wasn’t judgmental and very quietly asked me if I had ever considered insulin pump therapy. I immediately said no and didn’t want any part of a pump. Can you imagine being connected to something all the time? But being alone and realizing the current road I was on maybe wasn’t the right one. I started to read everything and anything about diabetes. I educated myself on different ways to eat, and exercise. I learned about certain foods that help stabilize blood sugar for longer periods of time. And foods that can spike sugars so high and take a long time to expel from the body. It slowly started to dawn on me that maybe I could follow “some” of the rules related to having diabetes and still be me. I also started to think heavily about my future and what I wanted in it. I was told very early on that I would not be able to have children and that if I did it would be very difficult to have a healthy baby and the amount of strain it would put on my kidneys would be hard to survive. Think all the bad parts of “Steel Magnolias”. So I convinced myself for a long time that I did not want children and tried to live my life as such. But then one day I could no longer fight the feeling of wanting a child and my desire overcame me. I lived with my desire for a long time still thinking I was broken in some way and that the possibility of me having a child was slim to none.
I continued to see my endocrinologist and he continued to ask me if I would consider insulin pump therapy. Each time it became increasingly difficult to say no to. He always had pamphlets of information ready to give me. At one visit he asked if I would just meet with the PA in the office who handled new pump patients. I said sure but made it clear I was not going to be a ‘new pump patient” . I met with her one day she was pleasant enough and seemed to know a lot about insulin pumps. She let me hold the pump, this device that claimed to be a better alternative than what I was doing looked like an outdated pager. She asked if she could inject the plastic catheter into my stomach to demonstrate it didn’t hurt like a needle. Surprisingly I let her and surprisingly she was right. I left that day confused, scared, and now dreading having to give my next injection.
For six months I cried, prayed, and ignored everything I knew I was beginning to see. I was still fighting the idea of being attached to something so permanently. I just couldn’t publicly admit I had diabetes. But my desire to live a longer life and my desire to have children couldn’t be ignored. I knew I had to confront my diabetes once and for all. So I did. I faced it head on, stood up to this chronic illness and finally accepted it. I cannot describe how incredibly painful it was, for me to do that. I didn’t do it alone my personal belief in God helped me come to terms with what I had fought for so many years. My family with their love and support slowly pushed me along. Then, after the pain came clarity and peace. This demon I had fought with so much of my life was put to rest. I was calm and knew what I had to do next.
In May of 2008 I finally agreed to go on the pump and the continuous glucose monitor. Scared, excited, fear of the unknown. I felt like I had been here before. Boy, yet another huge obstacle to overcome. New supplies, alarms, gadgets a whole new world. Didn’t I already go through this once? But this time was different. I was not angry, fearful or rebellious for the first time I wanted to know all about it. There was definitely a period of transition and figuring out the bugs. Having to go through a few catheters before knowing exactly how to inject it correctly. Learning what all the alarms, and what button did what took some time. I immersed myself in the free classes given and read any piece of information that existed about the pump and how it all worked. For years going on a trip meant taking the special coolant bag for my vials of insulin and a bag of syringes now I could just go. I could be a little broader with food choices and use bolus correction if I was really naughty. This was amazing! Why had I not done this before? For the first time I felt free and in control. Even though I was now attached to this outdated pager, it was my key to a life. A life I felt I had been missing, this was my new best friend. I felt fearless for the first time in my life. I had accepted my diabetes.
Fast forward to present day, if you look at a timeline part of me thought I would have never made it to this point. I am 34 years old, blessed to be married to a wonderful, loving, supportive man who has embraced my diabetes and encouraged me to tell my story. I have three beautiful children, two of which I carried who are beautiful and healthy and one who may not be from my womb but she is a part of me just the same. My days are full of wonderful, hectic moments that I wouldn’t trade for anything in this world. That includes my diabetes. I have accepted my diabetes.
Now looking back on my journey I constantly think about the things I did wrong and longingly wish I had someone to talk to who could truly understand what I was going through. Would it have helped? I cant say for sure, but no one should have to feel alone and scared when dealing with a new challenge in their life. So here I am ready to be vulnerable and transparent hoping to help even in a small way. To show that even with this chronic illness we can and will have fulfilling lives. That even though we have to take extra steps to achieve what we want we can still do it! I do not fear diabetes anymore. I am a fearless diabetic!