My Story Battling Rare Diseases

HypoGal Shares How Becoming A Mom Almost Caused Her Death

My Story, HypoGal XO, Play It Forward.

HypoGal: My Story

By Lisa, a.k.a. HypoGal

I never thought much about the words “chronically ill” or “living with a disability” — until those words became part of my daily reality.

Before my chronic illness journey began, I equated illness with something obvious and extreme: dying, paralysis, or hospital beds. I had no idea how fragile health could be. I took for granted my ability to walk, talk, drive, socialize, and even use the restroom without issue.

That all changed after the birth of my second daughter, Isabella.

Hi, I’m Lisa, and I have Sheehan’s Syndrome — a rare condition that changed the course of my life. I share my HypoGal story to help others searching for answers.

The Beginning

My chronic illness journey began after the birth of my first daughter, Sarah, on January 24, 1998. I delivered via C-section, and though it was my first pregnancy, I knew something wasn’t right. My labor pains were unbearable. With every contraction, it felt like my organs were being torn apart.

My pleas for help were brushed off. Unfortunately, my OB was on vacation. When Sarah’s heartbeat began to drop, the team rushed me into emergency surgery. During the C-section, doctors discovered I had partial placenta accreta — where the placenta embeds deeply into the uterine wall. This caused me to hemorrhage. Thankfully, they stopped the bleeding and saved my uterus.

After a series of miscarriages, I became pregnant again. Isabella was born on March 15, 2002, via planned C-section. But shortly after her birth, my body began to fail.

I couldn’t stop vomiting. My body temperature dropped. I was numb with fatigue yet unable to sleep. What I didn’t know then: I was in an adrenal crisis.

The Downward Spiral

I came home with my beautiful baby but never felt “normal.” What was normal, anyway? After five difficult years of pregnancy and loss, I figured exhaustion was to be expected.

But things only got worse.

I dropped weight rapidly. I couldn’t hold down food. My entire body ached. I felt like I’d just run a marathon every single day. I grew weaker by the week.

Eventually, I became a shell of myself. My memory slipped. My speech faltered. I cried constantly and felt completely overwhelmed. The pain pulsed through my body like I was a wounded animal. And still — no answers.

Specialist after specialist told me I was “fine.” My labs were “normal.” My blood pressure — 90/60 — was praised. Most chalked it up to postpartum depression.

But I knew something was deeply wrong.

By December 2002, I was severely underweight, pasty, frail, dizzy, and unable to hold my baby. At that point, I didn’t care if I died. I just needed to know what was killing me.

A Diagnosis: Sheehan’s Syndrome

Desperate, my husband reached out to friends and found Dr. Larry Froch at UCLA. After running a stimulation test, Dr. Froch suspected Adrenal Insufficiency and referred me to Dr. Van Herle, Head of Endocrinology at UCLA.

Though initially doubtful, Dr. Van Herle confirmed the diagnosis after reviewing my Metyrapone test: I had Sheehan’s Syndrome — a rare condition caused by severe blood loss during childbirth that damages the pituitary gland.

Finally, I had a name for my suffering.

Living With Sheehan’s Syndrome

Sheehan’s Syndrome means my pituitary gland no longer functions properly. I compare it to a car with all working parts — but a broken ignition switch. Without that signal, nothing runs.

I take hormone replacements every day. But medication is never quite the same as what your body naturally produces. Stress of any kind — physical, emotional, or even minor illness — can send me into adrenal crisis.

Thanks to the internet, I connected with an online group of women living with Sheehan’s Syndrome. They gave me hope, knowledge, and referrals to endocrinologists who understood pituitary disorders.

Most endocrinologists specialize in diabetes — not pituitary disorders. Many have never seen a Sheehan’s patient.

Medical texts say we can live “normally” with medication. But I’ve never met anyone with Sheehan’s who lives a truly “normal” life.

Pulmonary Embolisms (2003)

My diagnosis brought some relief, but my health struggles were far from over. Months later, I began having severe shortness of breath.

A pulmonologist dismissed me, telling me to use my asthma inhaler. When things got worse, my husband drove me to the ER.

There, my pulmonologist reviewed a normal chest X-ray and told my husband I had anxiety. He told me to go home and take anti-anxiety meds.

I broke down. Through tears, I begged: “If you send me home, I will die.”

Finally, after my husband pleaded, they ordered a VQ scan — which revealed hundreds of pulmonary embolisms. I was immediately admitted to the ICU.

One embolism can kill. I had dozens. Since then, I’ve been on blood thinners — for life.

A Perforated Colon (2004)

In March 2004, I experienced sharp abdominal pain. I’d seen a GI doctor the year before, who dismissed my symptoms as “stress.” After insisting on testing, he told me everything was fine.

Then one day, I collapsed from stabbing chest pain. In the ER, a CT scan revealed air in my abdomen — an emergency. I was rushed into surgery.

My colon had perforated from severe diverticulitis.

I woke up with my abdomen sliced open and a colostomy bag attached. It took two months to heal. Emotionally, it took far longer.

Another Diagnosis: Relapsing Polychondritis (2008)

Nearly a decade into my journey, I developed a second rare disease: Relapsing Polychondritis, an autoimmune condition that attacks cartilage.

My ears blistered. My skin turned red and painful. Doctors were baffled. They pumped me with antibiotics and sent me home.

Days later, desperate, I googled my symptoms: “red ears, fatigue, skin discoloration, rib pain.” Up popped Relapsing Polychondritis. I had diagnosed myself — again.

Steroids helped initially. But over time, even high doses couldn’t fully control my symptoms.

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2010 – Cervical Dystonia

I was in severe pain when I visited my pain management specialist. I explained that the stabbing pain in my neck made it feel like my face was crooked. The doctor asked me to stand with my back against the wall, which I did. Then he asked for my driver's license. After a brief pause, he looked at me and said, “You have Cervical Dystonia.”

**Cervical Dystonia**, also known as *spasmodic torticollis*, is a painful neurological condition where the neck muscles contract involuntarily, causing the head to twist or turn to one side. In some cases, the head may uncontrollably tilt forward or backward.

In my case, my neck muscles spasm side-to-side. And yes — it's another rare disease. Thankfully, my specialist skillfully injects Botox into the affected muscles in my neck and jaw to help reduce the spasms and relieve some of the pain.

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A Glimmer of Hope: Low Dose Naltrexone (2015)
By 2015, I was exhausted — again. In desperation, I tried Low Dose Naltrexone (LDN), an off-label treatment. It helped.

My Relapsing Polychondritis didn’t disappear, but my baseline improved. Some days, even my fibromyalgia and chronic fatigue quieted down.

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2018 – Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

In pain and lost in a fog of extreme fatigue, I visited a well-known neurologist. She quickly assessed my symptoms and decided to run several tests.

The first was a **nerve conduction study and electromyogram (EMG)** — tests that use mild electrical currents to examine nerve and muscle function and detect damage to the myelin, the protective covering of nerves.

The second test was a **nerve biopsy**, a rare procedure where a small piece of nerve tissue is removed and examined under a microscope. Unsurprisingly, given my track record with rare diseases, the biopsy came back positive: I had **Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)**.

CIDP is a rare autoimmune disorder where the body attacks the **myelin sheaths** that protect the peripheral nerves. This explained my increasing leg weakness and the debilitating fatigue I experienced just from walking.

My neurologist recommended **IVIG (intravenous immunoglobulin)** therapy to halt the progression of the disease. I was all in — until I learned the cost. My 20% co-pay was nearly \$6,000 per month. Thankfully, I qualified for a grant that covered the co-pay.

Life with a chronic illness is mind-numbingly expensive.

The silver lining? IVIG improved my quality of life and even helped alleviate symptoms from my **Relapsing Polychondritis**. IVIG is administered via infusion over four hours, four days each month.

It's not easy — but it helps me keep moving forward.

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Life Lessons From Chronic Illness

I’ve spent my days juggling doctor visits, insurance claims, and medications — just to survive. I’ve learned:

Medicine is subjective.
You can be gravely ill with “normal” labs.
Disability Insurance is essential.
Private insurance matters.
Don’t ignore your intuition.

Most people don’t understand invisible illness. I may “look fine,” but mornings can take hours. My energy window is short and inconsistent.

Who Am I Now?

People tell me I should be “grateful” for the lessons illness taught me. I’m not.

I want my life back. I miss spontaneous adventures, long walks, and carefree shopping trips with my daughters.

But I’ve learned to make lemonade. I just need a lemon tree.

That’s why I created HypoGal — to share what I’ve learned and help others find shortcuts to living with chronic illness.

With love and strength,

Lisa (HypoGal) XO