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

I never considered what the words "chronically ill" or "living with a disability" until I began my HypoGal journey.

I used to relate "chronically ill" and "disability" to someone dying or becoming paralyzed. 

Before living with a chronic illness I naively took my ability to walk, talk, socialize, use the restroom or drive a car for granted.

I had no idea that after the birth of my second daughter, Isabella, my life would these new words, chronically ill.

Hi, my name is Lisa, and I have Sheehan's Syndrome.

I hope my HypoGal story will help others who are sick and in search of answers.

My life with a chronic illness began when I gave birth to my oldest daughter, Sarah, via C-section on January 24, 1998.

Even though it was my first time giving birth, I knew my labor pains were not typical. With each contraction, my organs felt as if they were being pulled out of my body.

My pleas to the labor nurse were not well received.  

Sadly, my timing to give birth was less than ideal; my O.B. was away on vacation.

As my daughter's heartbeat began to decrease, the doctor decided that I need an emergency C-section.

During my C-section, one of the surgeons discovered that I had partial placenta accerta.

Partial placenta accerta meant that my daughter's umbilical cord was embedded inside of the uterus.

The placenta accrete, caused me to hemorrhage.

I am fortunate that the surgeons were able stop the bleeding and save my uterus.

After several miscarriages, I became pregnant with my second daughter, Isabella.

This time, a C-section delivery date of March 15, 2002, was chosen.

As my O.B. delivered my daughter, I felt that something is wrong with my body.

Minutes after my daughter's birth, I began to throw up, and my body temperature was abnormally low.

My body became numb with fatigue, but I was not able to sleep.

I was not aware that all these symptoms are signs of an adrenal crisis.

A week after I arrived home with my beautiful baby daughter, but I never felt normal.

However, I questioned, what is my normal?

I had just been through five years of complicated pregnancies.

I had never experienced a severe illness, and I thought I must be tired, like all new moms.

As the months passed, so did my weight.

At first, I was happy about my weight loss. Suddenly, I realized that I could not stop the pounds from leaving my body.

My food intake went rapidly through my body.

My body fatigue was unbearable. My entire body pulsed in pain, as if I had just finished a twenty-six-mile marathon.

Each week I became weaker and weaker.

As I become weaker, I swirled into depression, my memory starts to fail me, I have trouble with my speech, my body ached all over, and I had extreme jabbing abdominal pain.

I dread conveying all my symptoms because it sounded like I was a hypochondriac.

Sadly, my family had to live through my emotional havoc.

Everything and anything makes me cry, and the thought of everyday life overwhelms me.

Each day the pain throughout my body increased; I spend my time in tears crying in pain like a wounded animal.

I had no idea of what is wrong with my body. However, my outward appearance began to appear how I felt, sick. 

My husband did what he could do to be supportive. However, there were numerous times when he thought my body was in postpartum depression and I was a hypochondriac.

Through my never-ending medical appointments with different specialists, I conveyed to each doctor that all of my symptoms began with the delivery of my second daughter.

Medical specialists after medical specialists reinforced to me that I was healthy.

Each doctor reassured me that my labs were normal.

Several doctors noted my fabulous low blood pressure of 90/60.

Doctors kept informing me that all new mothers feel exhausted.

So many doctors informed me that I have postpartum depression that I almost accept their diagnosis.

With much frustration, I explained to each doctor that I am suffering from depression because my body screams in pain and not because I am depressed.

It became incredibly apparent in December 2002 that I was severely ill.

I am looked extraordinarily skinny but not healthy thin.

My body looked malnourished, anorexic thin, pasty white; I was too weak to lift my new daughter and too dizzy to walk.

At this time, I did not care if I died. However, I did want to find out what was killing me.

Sheer hopelessness resonated throughout my body.

U.C.L.A.

Desperate for help, my husband asked friends if they know a brilliant doctor.

A friend refers me to Dr. Larry Froch at U.C.L.A., and it is Dr. Larry Froch that first suspects that I might have Sheehan's Syndrome.

The test results from a stimulation test Dr. Froch confirmed that I most likely had Adrenal Insufficiency.

Dr. Froch referred me to the Head of Endocrinology at U.C.L.A., Dr. Van Herle.

I am forever grateful to Dr. Froch, for his thinking outside the box. 

During my appointment with Dr. Van Herle, he questioned the likeliness of a Sheehan's Syndrome diagnosis.

However, once Dr. Van Herle received my Metyrapone test results, my Sheehan's Syndrome diagnosis is confirmed.

I finally have a diagnosis, Sheehan's Syndrome.

Sheehan's Syndrome 2003

Sheehan's Syndrome is a rare disease, and the treatment is an endless balancing act of medications.

My pituitary gland cannot signal hormones to produce, so I need to take replacement medication throughout the day.

I can best relate the pituitary gland to an automobile ignition switch.

My body, like a car, has all the working parts but a nonfunctioning ignition (pituitary gland) switch.

Like the ignition of an automobile, the pituitary gland sends out messages for the body to operate.

I am fortunate there are medications to help replace the hormones that my body can't produce.

However, medication is never quite the same as what your body produces naturally.

My body does not act kindly to the stress of any kind.

Events such as an illness, physical or emotional stress can send my body into an adrenal crisis.

I am also extremely fortunate to live in a time where I have access to information, i.e., The Internet.

Without the Internet, I never would have connected with an incredible group of Sheehan's Syndrome women.

Through the compassionate Sheehan's online group, I found knowledge, compassion, and a place where I was able to connect emotionally.

Within this group, I find an Endocrinologist who specializes in the pituitary gland.

Most Endocrinologists specialize in Diabetes, and a limited amount of Endocrinologists have pituitary patients.

Most doctors and Endocrinologists never had a Sheehan's Syndrome patient.

Older medical books state Sheehan Syndrome patients can live a "normal life" with medication.

However, I have never heard of or met a person with Sheehan's Syndrome that lives everyday life well.

Pulmonary Embolism's 2003

Finally, I had a diagnosis of Sheehan's Syndrome. However, my health Dominos continued.

As the year moved forward, I continued to become shorter and shorter of breath. 

Anxious and very concerned about my lack of air, I made an appointment with a Pulmonologist. 

The Pulmonologist told me that I needed to use my asthma inhalers and I may have bronchial issues down the road.

Per, the Pulmonologist's instructions, I use my asthma inhalers numerous times a day.

But, as each day passed, my ability to breathe decreased. Each breath I take felt like I am gasping for air through a narrow straw.

Alarmed by my breathing, my husband droves me to our local Emergency Room.

My Pulmonologist was at the E.R., and he informed my husband that my lung X-ray was normal.

He then walked my husband into the hallway to told him that I suffered from depression and that I had anxiety.

After the Pulmonologist informed my husband of my depression and anxiety, the doctor proceeded to tell me that I needed to take anxiety medication. He then told me that I must leave the Emergency Room and go home.

I proceed to have an emotional breakdown in the Emergency Room, and I refused to leave.

With much anger, frustration, and exhaustion, I told the doctor that I will die if he sends me home.

Finally, after my husband's pleas with the doctor, the doctor relented, and he ordered a V.Q. Scan of my lungs.

When the radiologist informed my Pulmonologist about the results of my V.Q scan, he admitted me to the Critical Intensive Care.

The V.Q. Scan showed hundreds of small embolisms in my lungs.

One embolism can kill you.

So, blood thinners are included in my daily medication list. I am told that I must be on blood thinners for the rest of my life.

Reasons For My Perforated Colon 2004

In March of 2004, I experienced extreme abdominal pains, especially on my lower left side.

The GI doctor I had an appointment with in 2003 conveyed to me that there is nothing wrong with my G.I. system.

The doctor tells me I am stressed and depressed from being a new mom.

I questioned his diagnosis, and I insisted on a colonoscopy and other G.I. tests.

The Gastrointestinal doctor performed a colonoscopy and endoscopy.

The G.I. doctor conveyed to me that my test results were typical. The doctor stated my results are within average.

I questioned the doctor about my results, and I reemphasized the terrible pain on my lower left side.

The Gastrointestinal Doctor then proceeded to assure me that I do not have a G.I. ailment.

One day in March 2004 and I felt an extreme shooting sharp chest pain.

It was the type of intense stabbing chest pain that drops you to your knees. A type of pain that you cannot ignore.

Sadly, I believed I had another embolism.

I arrived at the Emergency Room, and the doctor ordered a gambit tests.

A CT scan showed that I have air in my abdominal cavity, so I ended up on the operating table for emergency exploratory surgery.

I woke up in a hospital room with my abdomen split open and a colostomy bag on my right side.

My colon perforated due to serve Diverticulitis.

The surgeon was upset, and he told my husband and me that my colon should not have perforated.

The doctor could not believe that I had a colonoscopy a year prior.

My twelve-inch incision from exploratory surgery was left open to heal naturally, and a beige rectangle colostomy bag is glued to the right hand-side of lower region of my stomach to catch my waste.

It was approximately two months for my abdomen wound to heal.

My body began to recover from the surgery, but my emotions did not heal well.

After two months, I had  the colostomy bag removed.

I came home from the hospital the day my youngest daughter turned two.

I felt fortunate to see my daughter turn two, but I feel robbed of my daughter's first years.

As my life with Sheehan's Syndrome continued, I became better equipped to balance my medication.

My life on steroids is a challenged, and I continuously struggled as my weight goes up and down.

My compromised immune system opens the door to a life of unexplained illness.

Relapsing Polychondritis 2008

Almost a decade after, I developed Sheehan's Syndrome, another rare disease that radiated through the cartilage of my body.

The disease Relapsing Polychondritis attacks the cartilage throughout my body.

Unfortunately, the rare disease Relapsing Polychondritis was not diagnosed during my E.R. visit or the week hospital stay afterwards.

Hospital doctors appear alarmed and puzzled by my red ear blisters, and they decided to pump me full of antibiotics and placed me on an IV Steroid Drip.

The IV Steroid Drip helped to stop the progression of the Relapsing Polychondritis.

Unfortunately, the hospital doctors released me, but I insisted there is something terrible brewing in my body.

I am exhausted and frustrated as several medical specialists question my symptoms.

I showed the doctors my Red Ears, and I tell doctors that my red ears must be a clue to what was wrong with me.

I knew my Red Ear are screaming, "Help Me!

I told the hospital doctors that the lobes of my ears were not being affected.

At the time,I had no idea that the bottom of the earlobe does not contain cartilage.

Sadly, four days after my release from the hospital, I self-diagnosed my Relapsing Polychondritis symptoms as I sat in my doctor's wait area.

Numerous medical specialists could not diagnose my blistered Red Ears and my raised discolored skin with a diagnosis when I was in the hospital.

Drum roll ...

As I waited in my doctor's wait area, I typed my symptoms: Red Ear, Pain, Fatigue, Blistering Skin, Discoloration of Skin, Painful Ribs into the Google search engine.

Within seconds stories and photos of Relapsing Polychondritis appeared from my Google search.

As I viewed the pictures of others with Relapsing Polychondritis, I knew I had another rare disease, Relapsing Polychondritis.

Most days my body flares from Relapsing Polychondritis.

When I feel tired or have low cortisol, my ears often flare, especially during stressful moments.

When I have bad flares, I increase my steroid dosage.

Increasing my steroid dose worked for a while.

Then even high steroid dosages were unable not stop my Relapsing Polychondritis symptoms.

Low Dose Naltrexone 2015 

In 2015 I was desperate for energy and to end the advancement of Relapsing Polychondritis, so I tried an off-label medication, Low Dose Naltrexone.

I had read about Low Dose Naltrexone for years, and I felt I had little to lose.

I am delighted to share that Low Dose Naltrexone is helpful to my body.

My Relapsing Polychondritis symptoms continuously occurred, but I had a new "normal" baseline.

Fibromyalgia and Chronic Fatigue Syndrome 

When I push my body, it is quick to remind me that my energy is limited.

I spend my limited energy with insurance claims, doctor appointments, and trying to stay healthy.

A chronic illness, has given me a new insight into our medical and insurance system.

I have learned a great deal from numerous caring people.

So many intelligent doctors try their best to improve our society.

These are some life lessons I have learned from my medical journey:

Never outsmart your common sense
Medicine is subjective
An individual can be gravely ill and yet have completely normal labs
Health Insurance is a must
The importance of Disability Insurance

Disability Insurance 

Until my world with a severe chronic disease, I had no idea that 1 out of 4 working adults over the age of 20 would become disabled for at least 90 days of their working years.

Alarming, Social Security Administration website publishes these facts on their website.

The Social Security Administration defines a narrow definition of what they consider disabled.

Under the Social Security Administration to apply for Social Security Disability Insurance Benefits:

you must not be able to engage in any substantial gainful activity (S.G.A.) because of a medically determinable physical or mental impairment(s):
That is expected to result in death, or
That has lasted or is expected to last for a continuous period of at least 12 months.

NOTE: There is a separate definition of disability for children (under age 18) who are applying for the Supplemental Security Income (S.S.I.) program.

A disabled child also qualifies for the S.S.I. employment supports described later in the Red Book.

Until I became chronically ill I did not understand the importance of Private Disability Insurance.

The difference between Social Security Disability Insurance and Private Disability Insurance is extreme.

Most private disability insurance policies offer a wider definition of a disabled person.

Also, Private Disability Insurance is usually much easier to receive than Social Security Disability Insurance (S.S.D.I.)

After developing two rare diseases, piles of medical bills, being too sick to work, I realized that disability insurance is more important to my family's well-being than life insurance.

I was always an advocate of life insurance, but my illness opened my eyes to the long-term costs of having a severe chronic disease.

Without my disability insurance, my family would have been in financial ruin.

Disability insurance was a necessity to secure your family's well-being.

Do not be in denial about disability facts.

I never thought I would become a disability statistic.

Even if you fully fund your disability insurance policy, life with an invisible disease can be full of hardships.

If you looked at me, you would assume that I am healthy.

Most people do not realize that it can take me hours each morning to start my day.

Every day my health can be unpredictable, and I spend many days inside the house. My window for being productive is often short and sporadic.

Unless you have a chronic illness, it can be challenging to understand.

Who Am I now?

I am surprised that so many people have told me that I must be thankful for all of the life lessons I have learned.

Sadly, I have spent too much of my life surviving and not enough living.

I miss not being able to go at a moment's notice, go for long walks, spend the day in the sun, or experience a shop to you drop days with my girls.

But, as the saying goes, "When life gives you lemons, you learn to make lemonade."

I need a lemon tree.

I play forward the medical information I have learned on this website, HypoGal.

My Best, Lisa, a.k.a. HypoGal, XOXO

Resources: Social Security Disability Insurance Definition

You may find these web pages helpful:

• What Is Sheehan's Syndrome?
• What Is Sheehan's Syndrome Caused By?
• Lab Tests For Sheehan's Syndrome
• What Are The Symptoms of Sheehan's Syndrome?
• Where Is The Pituitary Gland Located?
• Disease List

Additional HypoGal Stories:

• Home & Family Hallmark Promotes Sheehan's Awareness
• HypoGal and The Mayo Clinic Social Media Contest

Click on the following link to listen to my HypoGal Podcast Interview.

My HypoGal Podcast Interview is number 183.

Please, Like, HypoGal on Facebook. 

Most of my life I have never considered what the words, “chronically ill” or “living with a disability” represent until I began my HypoGal journey.

I use to relate the expression, “chronically ill” and “disability” to someone dying or becoming paralyzed. 

My Best, Lisa a.k.a. HypoGal, XOXO