Living With Type 1 Diabetes: Haley's Daily Journey

In this piece, I'd like to take you on my personal journey, from a Type 1 Diabetes diagnosis at the age of 26 to where things stand in my life right now. I plan on covering the different types of diabetes (you may not know this, but there are about 7 types in total) and providing information to help both educate people on this disease and make them aware of resources available to help fight it in a follow-up piece. However, since the inspiration for this blog is my personal journey with diabetes, I'll be focusing specifically on Type 1 today.


Type 1 Diabetes is an autoimmune disorder which causes your body to not produce insulin, essentially meaning that your pancreas is a quitter. As there is no cure, I will be on insulin shots or an insulin pump for the rest of my life. The symptoms that I began to experience leading up to my diagnosis were excessive thirst (I was drinking up to a gallon of water over the course of a 12 hour work shift), increased urination, fatigue, weight loss, blurred vision, weakness, nausea, hair loss and a faster resting heart rate. I became so weak, in fact, that I would regularly lose my balance, had to hold on to walls/railings while walking and couldn't even shower, as standing that long became impossible. If any of these symptoms sound even remotely familiar to you, I would urge you to speak with a doctor. Now, let's take a moment to revisit the days leading up to my diagnosis, before my life changed forever.


Because my mom's family has an extensive history of Thyroid problems, I was always on high alert for any of those symptoms to pop up. In March 2018, I became concerned with my growing level of fatigue; it felt like, no matter how much sleep I received, I was constantly exhausted. After sleeping 16 hours one day and still feeling tired, I decided to make a doctor's appointment so I could get some blood work done and also check my Thyroid levels. To say that this doctor (let's call him Dr. A -- for asshole) neither cared nor did his job properly would be putting it mildly. "Dr. A" immediately blew off my concerns, telling me that I likely had Sleep Apnea, a disorder of which I had neither family history nor symptoms.


He acted like I was some sort of inconvenience, like he had more important things to do than properly examine me. Finally, Dr. A resorted to ordering blood work so that he could send me on my way. I then received a voicemail from his office a few days later which stated that the results had come back normal. At this point, I was without answers and still feeling exhausted; but it couldn't have been anything major since my lab results were "normal," right?! WRONG. I wish that he could see this article and understand just how wrong he was. Perhaps if my diagnosis had been made sooner, I wouldn't have become so sick or wound up being hospitalized, which I'll touch on later.


Let's fast forward a few months, to June 2018, when I went to see a gynecologist. Upon arriving at his office (let's call him Dr. M) and stepping on the scale, I noticed that I had weighed in at 145 lbs, rather than 170; now, while I had noticed some weight loss and my increase in thirst by this point, in no way did I think I had lost 25 pounds. I immediately let Dr. M know of my concerns with this drastic change, especially since I hadn't been actively trying to lose weight. This was the first time that I had ever seen him, but Dr. M made me feel heard and I genuinely believed that he was going to help me. He worked in a different department within the same clinic as "Dr. A" at the time and was just as upset as I had been to learn that Thyroid tests had not been administered to me. *eye roll*


So, this quickly confirmed my suspicions: not only did "Dr. A" not believe me, but he also didn't have the decency to do his job to the fullest extent. Dr. M then ordered the remaining Thyroid tests and a glucose panel, also called an A1C check (an average blood sugar level over a 3 month period) on my behalf. I credit both Dr. M and my Endocrinologist, who I'll mention in a moment, with saving my life. Had he ignored my concerns like "Dr. A" had, I am genuinely not sure if I would still be here today. No hyperbole. *Destiny's Child's 'Survivor' starts playing*


After my A1C blood work came back over 12.4% (for reference, it should be under 6%), Dr. M immediately referred me to an Endocrinologist; however, that doctor would not accept my insurance. I then had to wait for another referral because, of course, you cannot see a specialist without a referral. So, between my visit with Dr. M and the next doctor that I'll speak about, I began to experience even more weight loss, an additional increase in thirst and urination and an even faster heart rate. I was weak and constantly out of breath, never hungry, very nauseous and increasingly fatigued. The only thing I didn't seem to have were any flu-like symptoms, which are fairly common among undiagnosed Type 1 diabetics.


Eventually, I was able to set my much needed appointment with an Endocrinologist, but it wasn't scheduled to take place until August 2018. In the meantime, I was able to see a Cardiologist, one who assists the Police Department I had been working at when my symptoms first started. Although I had started a new job at this point (July 2018), a previous co-worker secured the appointment for me out of concern, as I was declining very, very quickly. This Cardiologist, who I'll refer to as "Dr. S," was able to see me immediately (the first week of July and of my new job) and ran a full blood work panel, which would hopefully find the root cause of my problems. I was told that it would take about 2 weeks to get these results back, but that Dr. S would be able to get me another Endocrinologist appointment within that 2 week period. As a result, I cancelled the appointment I had set for August.


As I mentioned, I had just started my new job as a Crime Scene Investigator around this time. Shortly after starting, I was sent to Texas City, TX to take a photography training class; the Friday before departing for Texas City, though, I was able to see the Endocrinologist that Dr. S had referred me to (let's call her Dr. C). She ordered a smaller blood work panel that would actually arrive before the full panel that Dr. S had requested; at this point, I was down to just 120 lbs, meaning I'd lost 50 pounds total. I was so weak and constantly out of breath that, at one point, I even fell while getting out of bed to get ready for work one morning. My hair loss was also out of control, as I'd lost about half of it at that point with my self confidence taking a severe hit as a result. Not only did I feel horrible, but I could feel myself getting worse and worse each day. My cheeks were sunken in and people knew by simply looking at me that I was not okay. I continued to drink about as much water as I could, which caused me to urinate constantly; I was nauseous and had no interest in eating and I was just flat out exhausted. Just before I left for Texas City, I had the blood work done and felt like I would pass out just from giving that sample. I felt horrible the entire drive to Texas City that evening.


At 1 a.m. on July 23, 2018, Dr. C called me 4 times, leaving 2 voicemails. She called me from both her work phone as well as her personal cell; apparently she had originally blocked her number and when I wasn't answering, she unblocked it. Talk about dedication. I'm not sure I can express in words just how much I appreciated her concern. The reason why she was calling so frantically was because some of my blood work had come back with dangerously low potassium levels. For reference, your potassium level should be somewhere between 3.5 and 5.0, with anything below 2.5 considered dangerously low and could trigger a heart attack. My blood work showed an alarmingly low potassium level of 2.1, which caused Dr. C to advise me to get my levels re-checked immediately. I was reluctant because I had class in the morning and obviously didn't want to miss it, fearing that doing so might look bad to my new employer (turns out they didn't care if I missed this class, as long as I was okay).


From June until mid July when I was set to take my class, my blood sugar levels had been in the 300's; again, for reference, a normal blood sugar level (when not eating) is between 70 and 99. By order of Dr. C, I was checking my blood sugar before and after every meal; she also gave me a long acting insulin before beginning class. I had noticed my blood sugar spiking into the 500's during lunch, well above where it should have been. So, between the frantic phone calls from Dr. C about my potassium level and my blood sugar numbers, you could say that I was pretty concerned and scared.


On Tuesday of the week that I was in Texas City, my husband decided to drive down to see me and on Wednesday, we decided to take a trip to the ER. Despite my potassium and blood sugar issues, Urgent Care would not be able to help us and we needed answers. My husband being there was exactly the support that I needed and I'm so glad he made the choice to drive down that week. Once we were checked in and my vitals were done, I was moved to a room where the ER staff checked my blood sugar and my urine for ketones (chemicals that your liver produces when you don't have enough insulin in your body to turn sugar into energy). They also took some blood to test my potassium levels; once these levels were measured to be at just 2.6, I was admitted into the hospital and moved to the heart tower.


Following my admission, I called my boss to advise her of the situation and to let her know I may not make the final day of training. I needed to have four bags of potassium, along with IV fluids, pumped into my system, with each bag possibly taking up to an hour. The hospital's pharmacy was also very slow when it came time to bring up the next bag, which drastically lengthened the process. So, rather than the 4 hours that this process was supposed to take, I was out of commission for about TWELVE hours. I will say: my night nurse and her team were amazing and they all tried very hard to get me out of there as soon as possible so that I could make it to my training class the next morning. However, when they went to re-check my potassium in the morning after the 4 bags were done, they drew my blood out of the same IV they had been pumping the potassium through, which ultimately skewed the results.


My husband went back to our hotel during this process to pack up our room, as we had to check out by 10 a.m. Thursday. When we got the results of my blood work, it showed that my potassium levels were actually lower than before and the day nurses could not explain to me why that was the case. They also couldn't tell me when a doctor would be there; their instruction was simply to just give me...more potassium. Note: HIGH POTASSIUM CAN KILL YOU FASTER THAN LOW POTASSIUM. I also have to mention that, as soon as the 4th bag of potassium was done, I actually felt 100% better (I no longer felt weak, my cheeks weren't as sunken in, etc.) and I knew I didn't need more potassium. Since the staff couldn't answer my questions or even find a doctor to answer them, my husband contacted Dr. S for advice.


Dr. S confirmed that my potassium could not possibly be lower unless I had been vomiting the entire time that it was being pumped into my system. To make matters worse, the day nurses also tried to give me high blood pressure medicine, which I didn't need. At that point, my husband and I decided to leave the facility AMA, which means 'against medical advice.' While the hospital didn't want for me to leave, I was able to sign AMA paperwork that allowed me to leave without them being liable if I were to drop dead after I left. We chose this option, left the hospital after filling out said paperwork and I wound up making it to my training class after all (only 2 hours late!), still receiving credit for the course.


The following week, I met with the PA (physician's assistant) at Dr. C's office, where I was officially told that I had Type 1 Diabetes and would be on insulin for the rest of my life. I felt shocked, scared, confused, ashamed, all of the above. As soon as she said this, I zoned out and didn't hear much else. I don't even remember the exact date of my diagnosis, just that it was the last week of July 2018. After we left the office, I sat in my husband's car and cried the whole way home. I called my mom and told my closest friends, but I couldn't bring myself to tell anyone else beyond that. I took this news very hard and just couldn't understand why this had happened to me. I was ashamed, scared and concerned that people would think I did this to myself, that they would just make jokes. After my diagnosis, my friends and family were relieved to know what was wrong; what really bothered me, though, was that I'd hear things along the lines of "well, at least it wasn't worse." This was unacceptable because to me, it was worse! This is something that I'll be dealing with for the rest of my life. Expressions like those made me feel like I couldn't be as upset about it as I was when, in reality, I was devastated.


After a while, I realized that this was obviously not my fault and I chose to embrace my diabetes diagnosis as best I could. Soon afterward, I received the full panel blood work results from Dr. S, which weren't great. Due to my blood sugar being as high as it was for such a prolonged period of time, my levels were all kind of off. He told me that I was at risk for a heart attack by the age of 30; thankfully, once my blood sugar numbers were better and I got my A1C down, my heart levels also got better and I was no longer at risk. After being diagnosed, I went through definite stages of grief -- grief that I still deal with from time to time. This is normal, as this disease is a constant battle, one where every day is a fight and could honestly be the end. Diabetic Ketoacidosis (DKA), a serious complication of diabetes when your body is producing high levels of blood acids like ketones, is always on my mind because it can be deadly if help is not immediately sought. I was in the beginning of DKA when I was in the ER, so I am very thankful that it was caught early. Diabetes cannot be taken lightly.


Since my diagnosis, I've had consistent battles with my insurance carrier over covering certain items, like continuous glucose monitors (CGM's), pumps, etc. Insulin, test strips, needles and other associated items can all add to the already high cost of this disease. All of these factors combined can really hurt someone physically, emotionally and mentally. My mental health has taken a beating and I currently see a counselor. I also joined some amazing diabetic support groups through Facebook, which has been a real blessing for both support and answers to all of my questions. I got myself a Type 1 Diabetic tattoo as a symbol of who I am now, with my family getting Diabetic supporter tattoos. After two years of tears and struggles, I finally was able to get a CGM covered this past month. It's already made a huge impact on my life, as the data from the CGM has shown my doctors that I'm going through the dawn phenomenon. Also called the dawn effect, the dawn phenomenon is the term used to describe an abnormal early-morning increase in blood sugar (glucose) -- usually between 2 a.m. and 8 a.m. -- in people with diabetes. This means that no matter how great my numbers could be during the day, at night they're shit and I won't be able to get my A1C below 8% without the help of an insulin pump.


So now, it's time to fight my insurance company for the pump. *Cue the Rocky theme* My A1C at diagnosis, if you recall from earlier, was above 12.4% and within the first 3-6 months following diagnosis, I was able to get it down to 7.4%. A big reason for this drop, however, was that I was in my honeymoon phase with diabetes; similar to people trying to get in shape/lose weight, this is where everything you do to make changes seems to work and doesn't seem that hard. Once this phase ended, not only did it become much harder to control my numbers, but I also went through Diabetes Burnout. This is a term given to the state of disillusion, frustration and somewhat submission to the condition of diabetes that many people experience. Burnout can be characterized by a person's complete disregard for monitoring or managing their blood sugar levels.


So, after getting my A1C down to 7.4%, it soon jumped back up to 10.4%; I have begun working on this again and have gotten it back down to 9.1%, but this is a journey and a process that can be both difficult and frustrating. I was also unaware that my biological father's family had a history of Diabetes, both Type 1 and Type 2, so I truly had no idea this was a possibility for me until it happened. I'm still working on embracing life as it is now and this blog has been somewhat therapeutic for me. I constantly have to remind myself and others that I didn't cause this on my own. There's also no cure, it's not as easy as it looks to manage and it's expensive to live like this. At the end of the day, though, although Type 1 cannot be controlled, it can definitely be managed and yes, I can still eat that piece of cake!


Most importantly, I can do anything.


Here are a few pictures for reference. The first is of me in January of 2017, prior to my diagnosis or symptoms. The next two are before my diagnosis but when I was definitely experiencing symptoms and the final one is the most recent:





- Haley

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