Here we are, writing what I’ll call the most boring yet informative post. But it’s important because understanding this part of my life helps explain not only why this blog exists but also why this journey to Everest Base Camp (and through life) matters so much. So, throw on your daypack and let’s trek through the mystery that is my body. I’m what you might call a chronic illness warrior. A zebra, a spoonie, a person with lifelong health needs. Whatever label fits best that day. On my worst days, I feel like I have a fundamentally broken body—physically and mentally. But I’m working on reframing that into something more positive: I’m just a person whose body needs a little extra care and creativity.
Here’s the list of my diagnosed conditions in order of age at diagnosis (or best estimate based on memory and medical records):
• Asthma
• Complex Regional Pain Syndrome (CRPS) – age 12
• Depression – age 12
• Anxiety – age 12
• Ehlers-Danlos Syndrome (EDS) – age 14
• Endometriosis – age 16
• Postural Orthostatic Tachycardia Syndrome (POTS) – sometime in high school
• Dysautonomia (umbrella diagnosis) – early 20s • Polycystic Ovarian Syndrome (PCOS) – age 22
• Obesity (resolved due to bariatric surgery)
• Immune Reactive Gluten Intolerance – gluten-free since age 26
•Post-Bariatric Hypoglycemia – age 27
Now Let’s Break It Down:
– Asthma Let’s start at the beginning—diagnosis numero uno. I was in middle school and having on-and-off breathing issues. After allergy testing, I started allergy shots. Then, during a trip to Canada, I got sick—coughing, sneezing, producing all kinds of phlegm, and struggling to breathe. My breathing never really recovered after that. BOOM! You have asthma. That’s pretty much all young Alaina remembers about that diagnosis. For context, asthma is a chronic lung condition that causes your airways to swell, making it hard to breathe. It can be triggered by allergens, illness, or exercise. Lucky for me, all three things trigger my asthma. When I was younger, I was well-controlled with a daily inhaler and an Albuterol rescue inhaler. But then in 2020, I caught the dreaded illness we do not speak of (COVID-19), which led to an ICU admission and worsened my asthma significantly. Now, I can have an asthma attack from exercising too hard, getting a respiratory infection, or even hanging out with a cat. Recently, I started several daily inhalers and added a biologic medication, which seems to be working. (I was exposed to two people with the flu last week and only got a little sick—huge win!) My pulmonologist at Tufts Medical Center is supportive of my Everest Base Camp trek. She said she doesn’t want asthma to be the reason I can’t do something like this, and her goal is for asthma to become something I don’t have to think about daily.
– Complex Regional Pain Syndrome (CRPS) The big pain—that’s what this is. At age 12, I developed pain in my right arm from my elbow to my fingertips. My fingers curled, my hand sometimes changed colors (hello, purple?!), and the pain was excruciating—burning, intense, and seemingly never-ending. The road to diagnosis was long: physical therapy, surgery (more on that in Post 4), MRIs, CT scans, EMGs, countless blood draws, and too many doctor’s appointments. Eventually, I was diagnosed with CRPS, a nerve pain condition where your body sends way too many pain signals to an affected area (usually an extremity). I have Type 2, meaning it’s caused by permanent nerve damage (thanks, EDS!). At 12, I was told, “You’ll be in pain for the rest of your life.” Yeah… that didn’t go over well. But shout-out to Nurse Judy from the pain clinic and my fearless NP Christine, who taught me that even with chronic pain, I could still live a fulfilling and meaningful life. Those two women are the reason I became a nurse.
– Ehlers-Danlos Syndrome (EDS) Going to the pain clinic at Boston Children’s Hospital eventually led to this diagnosis. We noticed I was abnormally stretchy. Turns out, I was actually hypermobile and could move in ways that weren’t exactly… normal. EDS is a connective tissue disorder caused by faulty collagen production, which affects the body’s elasticity and stability. My joints tend to tear, stretch, and fall apart—basically like an old, overstretched elastic band inside my body. Looking back, I can connect the dots: the knee pain I had at age 10, the nerve damage in my ulnar nerve from hyperextending my elbow during childhood sports. Finally getting this diagnosis helped make sense of everything. Of course, young and reckless me decided to keep pushing my limits, denying that I had to take special care of my joints. Ah, to be young and indestructible.
– Depression & Anxiety We’ll group these together for brevity’s sake. With chronic health issues often come mental health challenges. Imagine being 12–14 years old, getting multiple lifelong diagnoses, and being told you’ll always be in pain. Naturally, that led to sadness, stress, anxiety, and moments of “I can’t do this anymore.” Thankfully, my support system—my family, my husband, and my beloved Iggys—helps me work through these ups and downs. It’s a cycle, but I’m never truly alone.
– Endometriosis In December 2012, I had surgery that confirmed my diagnosis. Since childhood, I experienced painful periods and heavy bleeding. Hormonal treatments didn’t alleviate my symptoms, so we opted for surgery, which confirmed endometriosis. I’ve since had two additional surgical excisions. Endometriosis is a condition where uterine tissue grows outside the uterus. When hormones trigger the shedding of this tissue during a period, the abnormal growths shed as well, causing significant pain. These growths can also damage other organs they attach to. It’s an ongoing battle, but understanding the condition has helped me manage it better.
– Postural Orthostatic Tachycardia Syndrome (POTS) This one feels like a blur in the midst of everything else. POTS is a condition where your body struggles to regulate blood flow, leading to dizziness, lightheadedness, and rapid heart rate upon standing. It falls under the umbrella of dysautonomia.
– Polycystic Ovarian Syndrome (PCOS) Growing up, I already had painful periods and had been diagnosed with endometriosis. On top of that, I developed ovarian cysts, insulin resistance, and abnormal lab results. This all led to my PCOS diagnosis, which also contributed to my struggles with obesity. PCOS is a hormonal disorder that affects metabolism and can lead to cysts on the ovaries, insulin resistance, and other complications. It played a major role in my weight challenges, which I’ll discuss next.
– Obesity (Formerly) This is a complicated topic. I struggled with my weight on and off for years, but it worsened in college. My weight led to borderline hypertension, prediabetes, and fatty liver disease—all of which exacerbated my other health conditions. Diets didn’t work. I tried everything—medical liquid diets, Atkins, Weight Watchers, exercise regimens—but nothing made a lasting difference. In May 2021, after much thought, I decided to have gastric bypass surgery with Dr. Dovec in Orlando. It was one of the best decisions I’ve made. I lost over 140 pounds and have maintained that loss for more than a year. My blood pressure normalized, prediabetes resolved, and my joints feel better. Oh, and I stopped snoring—my partner is especially grateful for that!
– Immune-Reactive Gluten Intolerance We’ll explore this more in a future post, but in short: my body mounts a significant immune response when I eat gluten (though I don’t have celiac disease). When I consume gluten, I experience swelling, gastrointestinal distress, migraines with vision changes, and brain fog that lasts several days. Since April 2021, I’ve been gluten-free and feel much better for it.
-Dysautonomia Dysautonomia is an umbrella term for several of my conditions, particularly POTS. Essentially, my autonomic nervous system—responsible for regulating things like heart rate, blood pressure, and body temperature—doesn’t always work properly. Symptoms include chronic fatigue, abnormal reactions to allergens, and trouble regulating my vitals. Oh, and I’m always cold.
– Post-Bariatric Hypoglycemia This one deserves its own future post, but here’s the gist: because of my PCOS and insulin resistance, my body has trouble regulating blood sugar after my significant weight loss. If I eat too many carbs without balancing them with protein or fat, my body overproduces insulin, causing my blood sugar to drop rapidly. I now wear a continuous glucose monitor to help me stay safe.
Wrapping It All Up These diagnoses could have broken me—but they didn’t. Instead, they’ve fueled my fire. They’re the reason I became a nurse and a nurse leader. They’ve given me the resilience and determination to trek through life, and they’ll help carry me to Everest Base Camp.
I may have a few cracks, but as the great Lin-Manuel Miranda said in Hamilton: “I am the one thing in life I can control.” And control it, I will.
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