HypoGal Shares How Becoming A Mom Almost Caused Her Death
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 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 normal. Each time I had a contraction, my organs felt as if they were being pulled out of my body. I pleaded to the labor nurse for help but she dismissed my pleas.
My timing to give childbirth was less than ideal; my OB was on vacation. As my daughter’s heart beat began to decrease the doctor decides that I need an emergency C-section. During my C-section, one of the surgeons discovered 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 caused me to hemorrhage. I am fortunate that the surgeons can stop the bleeding and save my uterus.
After several miscarriages, I became pregnant with my second daughter, Isabella. This time, a planned C-section and a delivery date of March 15, 2002, are chosen. As my OB delivers my daughter, I feel that something is terribly wrong with my body. Minutes after my daughter’s birth I began to relentlessly, throw up and my body temperature was 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 arrived home with my beautiful baby daughter, but never felt normal. However, I questioned, what was my normal? I had just been through five years of hard pregnancies. I had never had a serious 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, but then I could not stop the pounds from leaving my body. My food intake went rapidly through my system. And, the fatigue was unbearable. My entire body throbbed in pain as if I had just finished a full marathon. Each week I became weaker and weaker. I was depressed, my memory started to fail me, I had trouble with my speech, my body ached all over, and I had extreme jabbing abdominal pain. I dreaded 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 would make me cry, and the thought of everyday life just overwhelmed me. Each day my body became weaker, and illness throughout my body become apparent. Every day the pain throughout my body increased, I spent my time in tears crying in pain like a wounded animal. I had no idea of what was wrong with my body. My husband did what he could to be supportive. However, there were numerous times when I am sure he thought I had postpartum depression and that 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 tell me that I am healthy. Each doctor reassures me that my labs are normal. I am reminded by the doctors that I had a marvelous low blood pressure of 60/90. Doctor after doctor told me that all new mother’s are exhausted. So many doctors told me that I had postpartum depression that I almost accepted this diagnosis.
With much frustration, I explained to each doctor that I was depressed because my body screamed in pain and it was not because I depressed. It became incredibly apparent by December 2002 that I was severely ill. I was extremely 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. I just wanted to find out what was wrong with me. Sheer hopelessness resonated throughout my body.
Desperate for help my husband asked friends if they knew a brilliant doctor. A friend referred me to Dr. Larry Froch at UCLA, and it was Dr. Larry Froch that first suspected that I might have Sheehan’s Syndrome. The test results from a stimulation test Dr. Froch gave me confirmed that I most likely had Adrenal Insufficiency. Dr. Froch referred me to the Head of Endocrinology at UCLA, Dr. Van Herle. During my appointment with Dr. Van Herle, he questioned the likeliness of a Sheehan’s Syndrome diagnosis. However, once Dr. Van Herle received the lab results from my Metyrapone test, my Sheehan’s Syndrome diagnosis was confirmed. I finally knew I had, 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 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 doesn’t produce. However, medication is never quite the same as what your body would produce 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 was 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 have never had 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 had a diagnosis of Sheehan’s Syndrome. However, my health dominos continued. As the year moves 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 that I may have bronchial issues down the road. Per, the Pulmonologist instructions I used my asthma inhalers numerous times a day. But, as each day passed my ability to breath decreased. Each breath I took felt like I was gasping for air through a narrow straw.
Alarmed by my breathing my husband drove me to our local Emergency Room. My Pulmonologist was at the ER, and he informed my husband that my lung X-ray was normal. He then proceeded to walk my husband into the hallway to tell him that I am depressed and that I have anxiety. After the Pulmonologist informed my husband, that I am depressed, and I have anxiety, the doctor proceeded to tell me that I need to take anxiety medication. He then said that I must leave the Emergency Room and to go home. I proceeded 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 if he sent me home, I would die. Finally, after my husbands pleas the doctor relented, and he ordered a VQ Scan of my lungs. As soon as the Pulmonologist reviewed the VQ Scan, he admitted me to Critical Intensive Care. The VQ Scan showed that hundreds of small embolisms filled 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 had seen in 2003 conveyed to me that there was nothing wrong with my GI 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 GI tests.
The Gastrointestinal Doctor performed a colonoscopy and endoscopy. The GI doctor conveyed to me that my test results were normal. 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 GI ailment.
One day in March 2004 and I felt 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 believed I had experienced another embolism. I arrived at the Emergency Room, and the doctor orders a gambit of the tests. A CT scan showed that I had air in my abdominal cavity, so I ended 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 had 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 I had a colonoscopy a year prior. My eight-inch incision from exploratory surgery had to be left open and 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 can have the colostomy bag removed. I came home from the hospital the day my youngest daughter turned two. I felt blessed to see my daughter turn two but I felt 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 challenged, and I continuously struggle as my weight goes up and down. My compromised immune system opened the door to a life of unexplained illness.
Relapsing Polychondritis 2008
Almost a decade after I developed Sheehan’s Syndrome another rare disease radiated through the cartilage of my body.
The disease Relapsing Polychondritis attacks the cartilage throughout my body. Unfortunately, this rare disease was not diagnosed after numerous days in the hospital and several Emergency Room visits. Doctors were 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 my the progression of the Relapsing Polychondritis. Unfortunately, the hospital doctors released me, but I insisted there was something terrible brewing in my body. I was exhausted and frustrated as several medical specialists questioned my symptoms. I had shown the doctors my Red Ears, and I said my red ears must be a clue to what is wrong with me. I knew my Red Ear screamed, 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 while I sat in my doctor’s wait area. When I was in the hospital medical specialists could not provide my blistered Red Ears and my raised discolored skin with a diagnosis. 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. It has been several years since I was diagnosed with Relapsing Polychondritis. Most days I have flares of Relapsing Polychondritis. When I am stressed, tired or I have low cortisol my ears often flare.
When I had bad flares, I increased my steroid dosage. Increasing my steroid dose worked for awhile. 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 write that Low Dose Naltrexone has been helpful. I still have Relapsing Polychondritis symptoms, but I have a new “normal” baseline. My amplified 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 have genuinely tried their best to improve our society.
These are some 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 I had 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 are posted by the Social Security Administration.
The Social Security Administration define 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. I did not understand until I became chronically ill 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 was 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 filled with 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?
I am surprised some many people have told me that I must be thankful for all that I have learned from my medical experiences. I have always answered that I am not grateful to have had 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 day 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 what I have learned forward with 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