My Story Battling Rare Diseases
HypoGal Shares How Becoming A Mom Almost Caused Her Death
My Story, HypoGal XO, Play It Forward.
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.
I naively took for granite my ability to walk, talk, socialize, use the restroom or drive a car.
I had no idea that after the birth of my second daughter, Isabella, my life would take on 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 begins when I give birth to my oldest daughter, Sarah, via C-section on January 24, 1998.
Even though it was my first time giving birth, I know my labor pains are not normal. Each time I have a contraction, my organs feel as if they are being pulled out of my body.
My pleas to the labor nurse are not well received.
Sadly, my timing to give childbirth is less than ideal; my O.B. is away on vacation.
As my daughter’s heartbeat begins to decrease the doctor decides that I need an emergency C-section.
During my C-section, one of the surgeons discovers that I have partial placenta accreta.
Partial placenta accerta means that my daughter’s umbilical cord is embedded inside of the uterus.
The placenta accerta causes me to hemorrhage.
I am fortunate that the surgeons can stop the bleeding and save my uterus.
After several miscarriages, I become pregnant with my second daughter, Isabella.
This time, a C-section delivery date of March 15, 2002, is chosen.
As my OB delivers my daughter, I feel that something is terribly wrong with my body.
Minutes after my daughter’s birth I begin to relentlessly, throw up and my body temperature is abnormally low.
My body becomes numb with fatigue, but I am not able to sleep.
I am not aware that all these symptoms are most likely an adrenal crisis.
A week later I arrive home with my beautiful baby daughter, but I never feel normal.
However, I question, what is my normal?
I have just been through five years of hard pregnancies.
I have never experienced a serious illness, and I thought I must be tired, like all new moms.
As the months pass so does my weight.
At first, I am happy about my weight loss, but then I could not stop the pounds from leaving my body.
My food intake went rapidly through my system.
And, the fatigue is unbearable. My entire body throbs in pain as if I had just finished a twenty-six-mile marathon.
Each week I became weaker and weaker.
I am depressed, my memory starts to fail me, I have trouble with my speech, my body ached all over, and I have extreme jabbing abdominal pain.
I dread conveying all my symptoms because it sounds like I am a hypochondriac.
Sadly, my family has to live through my emotional havoc.
Everything and anything makes me cry, and the thought of everyday life just overwhelms me.
Each day my body becomes weaker, and illness throughout my body become apparent.
Every day the pain throughout my body increases, I spend my time in tears crying in pain like a wounded animal.
I have no idea of what is wrong with my body.
My husband does what he can to be supportive. However, there are numerous times when he thinks my body is in postpartum depression and I am a hypochondriac.
Through my never-ending medical appointments with different specialists, I convey to each doctor that all of my symptoms began with the delivery of my second daughter.
Medical specialists after medical specialists tell me that I am healthy.
Each doctor reassures me that my labs are normal.
Several doctors note my marvelous low blood pressure of 60/90.
Doctors keep informing me that all new mothers feel exhausted.
So many doctors tell me that I have postpartum depression that I almost accept this diagnosis.
With much frustration, I explain to each doctor that I am suffering from depression because my body screams in pain and it is not because I am depressed.
It becomes incredibly apparent in December 2002 that I am severely ill.
I am extremely skinny but not healthy thin.
My body looks malnourished, anorexic thin, pasty white; I am too weak to lift my new daughter and too dizzy to walk.
At this time, I do not care if I die.
I just want to find out what was killing me.
Sheer hopelessness resonates throughout my body.
Desperate for help my husband asks friends if they know a brilliant doctor.
A friend refers me to Dr. Larry Froch at UCLA, 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 give me confirmation that I most likely had Adrenal Insufficiency.
Dr. Froch refers me to the Head of Endocrinology at UCLA, Dr. Van Herle.
During my appointment with Dr. Van Herle, he questions the likeliness of a Sheehan’s Syndrome diagnosis.
However, once Dr. Van Herle receives the lab results from my Metyrapone test, my Sheehan’s Syndrome diagnosis is confirmed.
I finally know I have, Sheehan’s Syndrome.
Sheehan’s Syndrome 2003
Sheehan’s Syndrome is a rare disease, and the treatment is an endless balancing act of medication.
My pituitary gland is not able to 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.
The pituitary gland similar to the ignition of an automobile sends out messages for the body to operate.
I am fortunate there is medication to help replace the hormones that my body is unable to produce.
However, medication is never quite the same as what your body produces naturally.
My body does not act well 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 would never have connected with an incredible group of Sheehan’s Syndrome women.
Though the compassionate Sheehan’s online group I found knowledge, compassion and a place to emotionally connect.
It is within this group that I am able to find an Endocrinologist who specializes in the pituitary gland.
Many Endocrinologists only specialize in Diabetes, and a limited amount of Endocrinologists have any pituitary patients.
Most doctors and Endocrinologist never have a Sheehan’s Syndrome patient.
There are older medical books that 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 a normal life.
Pulmonary Embolism’s 2003
Finally, I have a diagnosis of Sheehan’s Syndrome. However, my health Dominos continues.
As the year moves forward, I continue to become shorter and shorter of breath.
Anxious and very concerned about my lack of air, I make an appointment with a Pulmonologist.
The Pulmonologist tells me that I need to use my asthma inhalers and that I may have bronchial issues down the road.
Per, the Pulmonologist instructions I use my asthma inhalers numerous times a day.
But, as each day passes my ability to breath decreases. Each breath I take feels like I am gasping for air through a narrow straw.
Alarmed by my breathing my husband drives me to our local Emergency Room.
My Pulmonologist is at the ER, and he informs my husband that my lung X-ray is normal.
He then proceeds to walk my husband into the hallway to tell him that I suffer from depression and that I have anxiety.
After the Pulmonologist informs my husband of my depression and anxiety, the doctor proceeds to tell me that I need to take anxiety medication. He then says that I must leave the Emergency Room and to go home.
I proceed to have an emotional breakdown in the Emergency Room, and I refuse to leave.
With much anger, frustration, and exhaustion I tell the doctor that if he sends me home, I will die.
Finally, after my husband’s pleas with the doctor, the doctor relents, and he orders a VQ Scan of my lungs.
As soon as the Pulmonologist reviews the VQ Scan, he admits me to Critical Intensive Care.
The VQ Scan shows hundreds of small embolisms in my lungs.
One embolism can kill you.
So, for the rest of my life, I need to include blood thinners to my daily medication list.
Perforated Colon 2004
In March of 2004, I am still experiencing extreme abdominal pains, especially on my lower left side.
The Gastro Internal Doctor I have seen in 2003 conveys to me that there is nothing wrong with my GI system.
The doctor tells me I am stressed and depressed from being a new mom.
I question his diagnosis, and I insist on a colonoscopy and other GI tests.
The Gastrointestinal Doctor performs a colonoscopy and endoscopy.
The GI doctor conveys to me that my test results are normal.
I question the doctor about my results, and I reemphasize the terrible pain on my lower left side.
The Gastrointestinal Doctor then proceeds to assure me that I do not have a GI ailment.
One day in March 2004 and I feel an extreme sharp chest pain.
It was the type of intense stabbing chest pain that drops you to your knees, and you are unable to ignore.
Sadly, I believe I have another embolism.
I arrive at the Emergency Room, and the doctor orders a gambit of the tests.
A CT scan shows that I have air in my abdominal cavity, so I end up on the operating table for emergency exploratory surgery.
I awoke in a hospital room with my abdomen split open and a colostomy bag on my right side.
My colon perforates due to serve Diverticulitis.
The surgeon is upset, and he tells my husband and me that my colon should not have perforated.
The doctor could not believe I had a colonoscopy a year prior.
My eight-inch incision from exploratory surgery is left open to heal naturally.
It takes two months for my abdomen wound to heal.
My body recovers from the surgery, but my emotions do not heal well.
After two months I have the colostomy bag removed.
I come home from the hospital the day my youngest daughter turns two.
I feel fortunate to see my daughter turn two but I feel robbed of my daughter’s first years.
As my life with Sheehan’s Syndrome continues I become better equipped to balance my medication.
My life on steroids is a challenge, and I continuously struggle 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 develop Sheehan’s Syndrome another rare disease radiates through the cartilage of my body.
The disease Relapsing Polychondritis attacks the cartilage throughout my body.
Unfortunately, this rare disease is not diagnosed after numerous days in the hospital and several Emergency Room visits.
Hospital Doctors appear alarmed and puzzled by my red ear blisters, and they decide to pump me full of antibiotics and place me on an IV Steroid Drip.
The IV Steroid Drip helps to stop my the progression of the Relapsing Polychondritis.
Unfortunately, the hospital doctors release me, but I insist there is something terrible brewing in my body.
I am exhausted and frustrated as several medical specialists question my symptoms.
I show the doctors my Red Ears, and I say my red ears must be a clue to what is wrong with me.
I know my Red Ear is screaming, “Help Me!
I tell the hospital doctors that the lobes of my ears are 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 sit in my doctor’s wait area.
When I am in the hospital, medical specialists could not provide my blistered Red Ears and my raised discolored skin with a diagnosis.
As I wait in my doctor’s wait area, I type 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 appear from my Google search.
As I view the pictures of others with Relapsing Polychondritis, I know I have another rare disease, Relapsing Polychondritis.
Several years have gone by since my diagnosis of Relapsing Polychondritis.
Most days my body flares from Relapsing Polychondritis.
During a stressful moment, when I feel tired or I have low cortisol my ears often flare.
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 try an off-label medication, Low Dose Naltrexone.
I had read about Low Dose Naltrexone for years, and I felt I had little to lose.
With delight, I write that Low Dose Naltrexone is helpful to my body.
I still have Relapsing Polychondritis symptoms, but I have a new “normal” baseline.
My Fibromyalgia and Chronic Fatigue Syndrome are quieter some days.
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.
I have 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 to 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
Until my world with a severe chronic disease, I had no idea that 1 out of 4 working adults over the age of 20 years old will become disabled for at least 90 days of their working years.
Alarming, these disability facts can be found on the Social Security Administration 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 (SGA) 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 (SSI) program.
A disabled child also qualifies for the SSI 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 realize 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 has opened my eyes to the long term costs of having a severe chronic illness.
Without my disability insurance, my family would have been in financial ruin.
Disability insurance is 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 with the funding of a disability insurance policy, life with an invisible disease can be full of hardships.
If you were to look at me, you would assume that I am healthy.
What most people do not realize is 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 difficult to understand.
Who Am I now?
It surprises me that so many people have said to me that I must be thankful for all of the life lessons I have learned.
I always answer that I am not grateful to have my medical odyssey.
I would like my old life back.
I feel that 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, being able to go for long walks, spend the day in the sun or have a shop to you drop days with my girls.
But, as the saying goes, “When life gives you lemons, you learn to make lemonade.”
Now all I need is a lemon tree.
I play forward the medical information I have learned on the HypoGal Website
and with the HypoGal Blog
The HypoGal Website and HypoGal Blog are platforms to help others find Shortcuts To Living With A Chronic Illness.
My Best, Lisa a.k.a. HypoGal, XOXO