“Watch your sugar”. These were the words of my cardiologist several years ago as I went for my regular blood work review. My appointments almost always went exactly the same. But, this time was different. My sugar, I thought? I don’t eat sugar! I was doing everything “right” in my mind. I participated in regular, rather committed exercise, eating a real food, low carb, no added sugar diet. So how did I have high blood sugar? I dismissed it as “he must be wrong”.
7 years before, I had been diagnosed with a dysfunction of my Autonomic Nervous System. My life had been somewhat “normal” back then, but the life changing diagnosis of POTS forced me to really improve my health. I began having symptoms of dizziness, trailing vision, nausea, and my heart would race doing even the simplest of movement. I could not tolerate heat, cold, or put myself in a situation that could cause dehydration. Considering I travelled for my job, this was no easy feat. Searching for answers was a dead end. It took over 6 months for them to tell me that I had POTS. Postural Orthostatic Tachycardia Syndrome.
My Primary Care doctor had reported I was “out of shape”. In hindsight, his flippant comment became a blessing. I learned quickly – if this is what out of shape feels like, then I will never be out of shape again!
And so I became a symptom management expert. I was a highly functioning POTS patient. I ate more salt than some people would eat in a year. I flooded myself with water. I exercised intensely, in spite of the days that I had cement shoes on my feet. It was the only way to get my blood moving and the alternative of spending the day with indescribable fatigue & dizziness was not an option. I was driven by fear of the terrible feeling of the symptoms I fought so hard to avoid.
I lost 30 pounds, along with my menstrual cycle. I stopped drinking alcohol. I changed my diet and nutrition. I was petrified of certain foods because anything that would mess up my digestion or fluid balance would send me to the hospital. My flare-ups were almost every month in the first year. The ER staff knew me by name at two different hospitals in town. Each year I would think I had a handle on it when I would get that little tap on my shoulder reminding me of my “perceived” limitations. I was determined to stay ahead of this nuisance. Still, no one really knew how to help since I appeared “fine” on the outside.
The doctor “experience” was very familiar to me. Not only did it take 6 months to diagnose my sudden symptoms, it was 6 years of dealing with a variety of doctors, none of which had a very great understanding of Auton0mic Nervous Dysfunction. However, they were all big fans of putting bandaids on my symptoms with prescription medications. I am grateful to say I have been off of prescription medication almost 2 years now!
I grew up with a father who was very strict with education. As a kid, I learned to embrace school and learning, mostly to avoid getting in trouble. I was blessed with an amazing mother who was a “Mom” in some way to all of our friends. She was truly an angel on Earth. She taught me that I can do anything that I wanted to do. She was our biggest fan. It was like she gave us wings. She was a Mom that woke her kids up singing Carol King’s “Beautiful”!
When I was a junior in high school, one of my half brothers committed suicide. He was 26 years old with a business, engaged to be married, and appeared to have it all together. So when he took his own life and I saw how it impacted the people he left behind, I just couldn’t understand it. I became obsessed with learning about suicide. I learned he was diagnosed Bi-Polar and on several medications. I researched the medications and became fascinated with the human mind. It was then that I decided I needed to pursue a career associated with helping people.
I completed my Masters Degree in Mental Health Counseling. During my internship, I worked with dual diagnosis patients who had a primary disorder (think depression, bi polar, manic, etc.) along with a substance abuse diagnosis. My dream of being “helpful” was soon diminished after I worked with a patient who was court ordered. He was an admitted crack addict who would come to therapy simply to get access to his medications from the staff psychiatrist. He had zero interest in helping himself.
On the flip side, I had a woman I used to call “old faithful” because she was so committed to therapy and wanted so badly to be a great person, but her personal living circumstances and the people in her life would not allow for her growth. I realized I had very little ability to impact outcomes.
Faced with the reality of student loans and needing to get a decent paying job, I went into sales, and eventually Pharmacy Distribution Sales.
Over the next 15 years in my world of pharmacy buyers, pharmacist interactions, and manufacturing relationships – I learned most of the people who were selling and making these drugs were actually opposed to taking them! Over the past several years, I also witnessed a large interest in Diabetic patients. Suddenly, there were FREE diabetes medication programs throughout pharmacies all over the U.S. I went to educational events and trade shows for big pharmacy chains that would confirm statistics on the profitability that a single diabetes patient brought to their organization. You see, most diabetics would get their free blood sugar medication – but the pharmacy would also gain the business on 15+ other medications to go with all of the heart disease, cholesterol, blood pressure, & other conditions that are common with a diabetic.
Around this same time, my father was beginning to have significant health issues, but my parents were not very verbal about it. My sister and I cannot recall exactly when my Dad was diagnosed diabetic, but we both remember watching Mom and Dad fumble with his new insulin pen, arguing over when he was supposed to take it. My Mom eventually became the coordinator for my Dad’s health and 17 medications. She spent hours preparing his medications for the week.
I finally found him a local diabetes nutrition specialist. That experience was disturbing since not only was the woman not the picture of health, her work with Dad was solely directed on how he could eat to maximize the performance of his insulin. There was not a single reference to nutrients, quality of what he put in his body, or physical activity.
Dad suffers from dementia, believed to be be associated with his Type 2 Diabetes. He takes 17 medications daily and at least 4 insulin shots. He spends every penny of his retirement on his personal healthcare. He was forced to retire due to his declining health and he has never spent a day on a golf course or enjoying his lifelong hard earned money and time off.
The most shocking moment of all came when Mom was diagnosed with bladder cancer. That day, we all sat in the doctors office, waiting on the results of her scan. The doctor revealed that she had cancer in her bladder and he proceeded to tell her that she caused it by smoking in the past. He recommended he quickly perform a biopsy. Paralyzed with fear, we scheduled it within a couple of days.
The biopsy revealed further horrific news. It was in the lining of her bladder and she would need a full hysterectomy, full removal of her bladder and would rely on an urostemy bag moving forward. He again maintained the urgency and we submitted like grateful servants.
My Mom lost her life months later. And we lost our best friend, our family “Rock”, our Nana, my Dad’s wife of 40 years, a sister to 6 siblings and an Angel to all.
The memories of the tragic experience – the repeated doctor & hospital negligence, the carelessly thrown away patient records, the misread life or death results, the lack of patient centered care, the deadly chemo, the fear driven decisions, the pharmaceutical fights for coverage, and the regrets of knowing what I know today that could have changed the outcome – are painful to say the least.