It was a bitter wintry night in Maryland in January 2017. A blizzard was about to hit the entire mid-Atlantic region, extending far down into the Deep South. The nurse at my teenage son’s boarding school called to say that Daniel had just been admitted to the hospital in Asheville, NC, suffering from a rare and life-threatening condition known as Stevens-Johnson Syndrome (SJS).
Planes were grounded, so I threw some things in a bag, and my college-aged daughter Julia and I jumped into the car for the 500-mile drive. As I sped down the highway, my daughter read me information from her cellphone Google search, including the fact that SJS patients were at risk for serious complications. Some SJS patients lost their eyesight, and some lost skin like burn patients. Some even died.
When we arrived at the hospital the next day, and I quickly threw myself into comforting and caring for my son. I stayed at the hospital with him 24/7, grabbing some food here and there, and napping on the little couch in his room. My only exercise was walking back and forth to the hospital cafeteria. Daniel was my one and only focus.
When I look back at that time now, I can’t really remember much about how I physically felt, except for being profoundly tired and exceptionally wired. I was drinking coffee day and night. My daughter kept ribbing me about the fact that my jeans were so baggy that they were almost falling off, but my weight wasn’t something I had the brain space to think about.
After more than a week of intense pain and trauma, Daniel was finally released. His doctors said he needed to recuperate locally for a few weeks before he could go back to school. So he and I decamped to a local hotel, where I was on full-time mom duty taking care of him until he was recovered.
Finally, after nearly a month, I was able to drop him off at school. On my long drive home, I stopped to visit a long-time friend, Jane, who like my daughter, commented on how skinny I looked. I brushed her off too. It’d been a stressful time, I wasn’t surprised I’d lost a little weight.
Symptoms That Were Too Easy to Ignore
But once I was home, the stress only continued. I was in the final stages of showing my house for sale, packing to move, and trying to find a new place to live after 18 years…all after being away for weeks. Between the house prep and getting back to my full-time patient-advocacy work, I was working 18-hour days. And even though more symptoms were popping up, I kept pushing through.
I was exhausted. My mouth felt like cotton. I even woke up several times a night so desperately thirsty that I gulped down a liter or more of water (this after sipping on a large water bottle all day long). Looking back now, I was probably drinking six or more liters of water a day and spending quite a lot of time in the bathroom as a result. And despite everything I was drinking, my skin was unusually dry (it was winter, right?). I notched my belt tighter and moved on.
About a week after getting back, I woke up after sleeping 14 hours straight. I got out of bed and was so weak I felt as though I was walking neck-deep in a pit of mud. No amount of coffee helped clear my fuzzy thinking. I finally admitted to myself that something was wrong—but for some reason, still didn’t call the doctor.
I did, however, have a nagging voice in my head that kept saying, “Test your blood sugar.” Finally, early that evening, I dragged myself to the pharmacy and bought a glucometer. Sitting in my car in the parking lot, I pricked my finger and self-tested my glucose for the first time in my life. The result: 445. Normal is less than 120. I thought it must be an error, so I tested it again. This time? 450.
Only then did I call my doctor. When I told her that my blood sugar was 450, she told me to hang up and go at once to the emergency room.
I drove 17 miles to urgent care instead because that’s what my insurer requires whenever possible. They ran another blood-sugar test, took some more blood and sent it to the lab. Within an hour, they put me on an intravenous drip of fluids and insulin. They said that I was seriously dehydrated, low on electrolytes, and needed the insulin to lower my dangerously elevated blood sugar, a condition known as hyperglycemia.
As the IV flowed, I was like a dried-up sponge soaking in life-giving fluid. The cotton-mouth feeling I’d been living with for weeks started to subside. I started thinking more clearly and quickly started to feel better.
I naively assumed they would send me home after a few hours and tell me to see my doctor for a follow-up. I was surprised, then, when they told me that an ambulance would be taking me to the nearby hospital, where I would be admitted to the intensive care unit (ICU). They explained that I had a life-threatening condition known as diabetic ketoacidosis, or DKA.
In DKA, the body’s inability produce insulin produces dangerously high levels of blood sugar that after time, can cause coma, organ shutdown, and eventually, death. I would need several days of careful monitoring in the ICU to prevent those scary complications.
The next morning, a doctor explained that at least for now, I was an insulin-dependent diabetic. While at the hospital, I did some research. Given my existing autoimmune disease—Hashimoto’s thyroiditis—I strongly suspected that I had also developed another autoimmune disease, a form of insulin-dependent type-1 diabetes called latent autoimmune diabetes in adults, or LADA. Having one autoimmune condition puts you at an increased risk of developing another down the road.
After a few days in the ICU, and a few more days in the hospital, the doctor released me. I was told to keep injecting insulin and to follow up right away with an endocrinologist for further evaluation, diagnosis, and a treatment plan.
At my endocrinologist appointment, the doctor reviewed my medical history, and the records from my hospitalization. I told her that based on my own history and research, I suspected LADA, and she agreed. She ran the tests that would rule it out, one measuring levels of C-peptide and one for glutamic acid decarboxylase antibodies (GADA). As it turned out, I had very low C-peptide levels and very elevated GADA antibodies–typical findings for LADA. Going forward, I would need daily blood-sugar monitoring and insulin injections.
While recuperating at home after my hospital stay, I had plenty of time to ask myself the obvious question: WHY DIDN’T I RECOGNIZE THE CLASSIC SYMPTOMS OF DIABETES EARLIER?
I lived and breathed hormones, after all! After more than 20 years as a patient advocate and as an author of more than a dozen health books, I’d read more medical textbooks and journals than I could possibly count. I could recite the signs and symptoms of every hormonal health condition–including diabetes—in my sleep. I’d also cautioned and counseled hundreds of my clients to pay attention to their symptoms and to be proactive with their doctors. I had no problem going to bat for my children or my clients and teaching them how to do the same for themselves. But I was so busy taking care of my son (and everything else), that I clearly had overlooked the need to take care of myself.
And, as a result, I ignored my own screamingly obvious diabetes symptoms, including rapid weight loss, excessive thirst, frequent urination, dry skin, fatigue, and muscle weakness. I’d also explained away and flat-out ignored my symptoms to the point that I ended up hospitalized and the ICU. The doctor said that if I had waited much longer, I probably would have gone into organ failure, a coma, or even died.
Why We Need 'Intensive Self-Care'
When you’re on an airplane getting ready to depart, the flight attendant’s safety briefing includes some version of the following caution: “In the event of a loss of cabin pressure, the oxygen masks above your seat will drop. Please place the mask first on yourself, and then help your child.” It’s overused, but this analogy works when applied to taking care of ourselves before we can take care of others.
I call it “intensive self-care.” It’s the recognition that under periods of ongoing and unrelieved stress, we need to follow specific steps to take care of ourselves.
Those of us with a chronic illness also need to practice intensive self-care. Why? For many of us, the daily challenges of life keep us in constant fight-or-flight mode. Even when we have unrelieved symptoms, or we don’t have an ounce of energy left, we still must push through and keep going. We have meals to cook, household chores to do, children and elderly parents to care for, partners and spouses to attend to, high-pressure jobs to perform, and a mountain of expectations and commitments to meet. Stress skyrockets and leaves many of us on high alert all the time.
Unfortunately, when we are living with acute or chronic stress, intensive self-care is usually the first thing to go. I know all too well, because that’s what I did.
I had to learn–the hard way. But you don’t have to.
The Basics of Intensive Self-Care
What is involved with intensive self-care? Let’s take a look at how you can put it into practice.
Get enough rest. Stress is exhausting, and it’s also a vicious cycle. Get enough rest to prevent stress. Researchers have shown that chronic stress has a significant effect on the immune system that ultimately manifest an illness.
This means that getting as much sleep and rest as possible are an essential part of intensive self-care.
It’s not always easy. In my situation, some things were beyond my control. I needed to stay at the hospital overnight with my son, where I found it hard—and sometimes impossible—to fall asleep. When I did manage to get there, I was frequently awakened throughout the night by nurses. But I should have used my usual go-to technique: listening to a guided meditation. And, there were times during the day when my son was resting when I should have taken a nap or rested—but didn’t.
Eat healthier foods. When we’re under stress or in crisis mode, what we eat may seem unimportant. But doing your best to eat healthy foods is another vital part of intensive self-care.
For example, I didn’t have to rely on the hospital cafeteria’s selection of greasy fast food and snacks. My son’s hospital room had a refrigerator, and there was a microwave available on the floor. I could have made quick trips to the nearby grocery store and brought back healthier foods and snacks. The same applies to our several weeks at the hotel, where we had a fridge and microwave, but lived on hotel breakfasts, fast food, and takeout.
Get physical activity. You don’t have to do a daily spin class or five-mile run, but intensive self-care requires some physical activity, every day.
During my weeks at the hospital and hotel, I didn’t exercise. In fact, I spent most of my time sitting. I could have done some walking in the hallways of the hospital or hotel, or even done some gentle yoga and stretching. I was so focused on my son, however, that I put my physical welfare on hold. As a result, my muscles became weak, my body was stiff, and I felt even more tired and rundown.
Use stress management practices. Stress has both a mental and physical impact. According to Herbert Benson, M.D., author of the bestselling book The Relaxation Response, even 10 minutes a day of a relaxation response practice such as meditation, tai chi, or crafting can inoculate us against the genetic and physical rampages of emotional overload.
During the time with my son, I didn’t keep up my usual practices. Typically, I do breathwork and guided meditation throughout the week. Once I arrived at the hospital, however, all thoughts of stress management went out the window, of course at the time when I needed it more than ever! As a result, I was in a state of fight-or-flight for weeks–flooding my body with caffeine-fueled adrenaline to supply the energy I needed for the long days and nights.
Pay attention and don’t explain away your symptoms. I’ve coached many women who assumed—and were told by doctors–that their extreme fatigue, depression, and weight gain were “normal for women,” “typical in new mothers,” or “usual during menopause,” only to find out later from new doctors that they had treatable hormone conditions.
Don’t explain away your symptoms, and don’t let others do it either! You may find it helpful to do a daily symptom check with yourself. This is my new daily routine. If I notice a symptom that’s out of the ordinary, I not only make note of it mentally, but I also make a point to jot it down and date it. When I notice a persistent symptom or pattern, I no longer hesitate, and check in right away with my doctor.
It was easy to explain away my symptoms. My weight loss was “due to stress,” my constant thirst was due to “dry indoor heating.” But I should have paid attention to and seen a doctor about my obvious symptoms. I was just too stressed to make it a priority until it was almost too late. So, if there’s anything I learned from my own experience, it’s that early intervention and diagnosis may prevent so-called “random” symptoms from turning into an acute and even life-threatening health crisis!
Do as I Say, Not as I Did
If I had followed intensive self-care, would I still have developed LADA? There’s no way to know for sure, but it’s possible that I may have at least slowed down the progression of my autoimmune diabetes, or maybe even prevented it. One thing I know for certain: I could have prevented the dangerous episode of DKA that landed me in the ICU and could have killed me. As it was, it took me months to recuperate from my hospitalization, and regain enough energy to fully function in my daily life and be there for my children and handle my daily life.
There was an upside to my trip to the ICU and LADA diagnosis, however. I’m now fully committed to intensive self-care, especially when times get tough. In fact, when life is at its most difficult, that’s when we MOST need to get enough sleep, eat well, move our bodies, and manage our stress.
So, please take it from me. I almost died after ignoring my symptoms and putting my own health last. Don’t make the same mistake! We all live with the day-to-day challenges of life – not to mention life with chronic illness. Put aside the guilt and excuses, put on that oxygen mask, and make intensive self-care a priority in your life. You are worth every single minute of time you spend taking care of yourself!