The story of Lisa
HypoGal Shares Information about Disability Insurance, Sheehan’s Syndrome and Relapsing Polychondritis (R.P.)
HypoGal, My Story
My Story; most of my life I have never considered what the words, “chronically ill” or “living with a disability” meant until I began HypoGal. I had related the words,” chronically ill” and “disability” to someone dying or becoming paralyzed. I naively had taken for granite the ability to walk, talk, socialize, use the restroom or drive a car. I had no idea that after the arrival 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 HypoGal, my 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, 1996. I was a first-time mother, but I knew the delivery was not normal. With each contraction, my organs felt like they were being pulled out. I pleaded for the nurses help but she discredit my pleads, and she later disapproved of my screams.
Unfortunately, my OB was on vacation for the weekend, so my timing to give childbirth was less than ideal. As my daughter’s heart beat began to decrease the doctor decided I needed an emergency C-section. The surgeon discovered during my C-section that I had partial placenta accreta. The placenta accerta meant my daughter’s umbilical cord had embedded inside of the uterus. The doctors found placenta accerta had caused me to hemorrhage. Fortunately, the surgeons were able to stop the bleeding, and save my uterus.
After several miscarriages, I was able to become pregnant with my second daughter, Isabella. This time, a planned C-section and a delivery date of March 15, 2002, decided. As soon as my OB delivered my daughter, I knew something was terribly wrong with my body. Minutes after my daughter was born I began to throw up relentlessly, and my body temperature was abnormally low. My body was numb with fatigue, but I was not able to sleep. I was not aware that all these symptoms were mostly like 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 been ill before and thought I must be tired, like all new moms. As the months passed so did my weight. At first, I was happy, but then I could not stop the weight loss. My food intake went rapidly through my system. And, the fatigue. My entire body pain throbbed as if I had just finished a full marathon. Each week I became weaker and weaker. I was depressed, I had very limited, short-term memory, trouble with my speech, fell from dizziness, 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 did not know what was wrong with my body. My husband did what he could be supportive but at numerous times, I am sure he thought I had served postpartum depression and that I was a hypochondriac.
Through my seemingly never-ending appointments with different ologists, I conveyed to doctors that all of these symptoms began with the delivery of my second daughter. Doctor after doctor, specialist after specialist that told me that I was healthy. Each doctor conveyed to me that my labs were normal, I had the marvelous low blood pressure of 60/90, and I was just exhausted because I was a new mother. Numerous doctors told me that I had postpartum depression.
Frustrated, I explained to the doctors that I was depressed because my body screamed in pain and dizziness, not because I depressed. It was incredibly apparent by December 2002 that I was seriously sick. I was extremely skinny but not healthy thin. I was malnourished anorexic thin, pasty white, 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. Utter hopelessness resonated throughout my body.
U.C.L.A.
Desperate for answers my husband placed calls to friends that might know 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 results of stimulation test given by Dr. Froch confirmed that I might have adrenal insufficiency. Dr. Froch referred me to the Head of Endocrinology at UCLA, Dr. Van Herle. Dr. Van Herle questioned the diagnosis the likelihood of Sheehan’s Syndrome, but once he received the results from his ordered diagnostic test, the Metyrapone test, it was confirmed. I finally knew what disease I had, Sheehan’s Syndrome.
Sheehan’s Syndrome
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 to an incredible group of Sheehan’s Syndrome women. This online group has given me so much 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 Endocrinologist only specializes in Diabetes, and a limited amount of Endocrinologist have few if 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 meet a person with Sheehan’s Syndrome that lives a normal life with medication.
Pulmonary Embolism’s
Finally, I have a diagnosis, Sheehan’s Syndrome. However, my health dominos continue to fall. As the year moves forward, I continue 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 I needed to use my asthma inhalers and that I may have some bronchial issues down the road. Per, the Pulmonologist instructions I begin to use my asthma inhalers numerous times a day. But, each passing day my ability to breathe decreases. Each breath I took felt like I was gasping for air through a narrow straw; I was not able to get air. Alarmed, my husband took 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 was depressed, and I had anxiety.
After Pulmonologist had informed to my husband, I was depressed, and I had anxiety, the doctor told me I needed anxiety medication, I needed to leave the Emergency Room and to go home. I then proceeded to have an emotional breakdown in the Emergency Room, and I refused to leave the E.R. Angrily, I told Doctor that if he sent me home, I would die. Finally, after pleads from my husband, doctor relented and ordered a VQ Scan of my lungs. As soon as the Pulmonologist reviewed the VQ Scan he admitted me into Critical Intensive Care. The VQ Scan showed that hundred of small embolisms filled my lungs. One embolism can kill you. So, for the rest of my life, I need to include blood thinners on my daily medication list.
Perforated Colon
A year goes by, and it is now March 2004. I am still experiencing extreme abdominal pains, especially on my lower left side. I had seen a Gastro Internal Doctor in 2003, and he conveyed to me that I was just depressed and stressed from being a new mom. I had insisted on a colonoscopy and other tests. The Gastrointestinal Doctor performed a colonoscopy, endoscopy and told me my test results were normal. 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 cannot ignore. Sadly, I believed I had another embolism.
I arrived at the Emergency Room, and the doctor ordered 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 reversal operation, and I have the colostomy bag removed. My youngest daughter had just turned two. I felt blessed to be alive but robbed of my daughter’s first years.
My life with Sheehan’s Syndrome continues. As the years pass, I am better able to balance my medication. Life on steroids is a challenge, and I struggle as my weight goes up and down. My immune system becomes compromised and my tendency to have an unexplained illness has become a way of life.
Relapsing Polychondritis
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.
Sadly, after four days my release from the hospital, I self-diagnosed myself sitting in my doctor’s lobby. In the hospital medical specialists were not able to diagnose my blistering Red Ear Symptoms and the discoloration of my skin. While I was in the hospital the solution to halt my Red Ear and pain was to pump me full of antibiotics and place me on an IV Steriods.
Steroids did help stop my Relapsing Polychondritis, but the hospital doctors did not diagnosis me. Several medical specialist questioned my symptoms, but my Red Ears screamed, help me. I kept telling the hospital doctors that the lobes of my ears were not being affected. At that time, I had no idea that the bottom of the earlobe does not contain any cartilage.
I discovered Relapsing Polychondritis from typing my symptoms of, Red Ear, Pain, Fatigue, Blistering Skin, Discoloration of Skin, Painful Ribs into the Google search engine as I waited in my doctor’s lobby. Stories and photos of Relapsing Polychondritis appeared from the Google search engine. As I viewed the pictures of others with Relapsing Polychondritis, I knew I had another rare disease.
It has been several years since my diagnosis of Relapsing Polychondritis. Most days I have flares of Relapsing Polychondritis. Under tiredness, stress or low cortisol my ears become red. To extinguish my Relapsing Polychondritis I up my steroids. The upping of steroids usually worked to stop the rapid progression of Relapsing Polychondritis under it did not.
Low Dose Naltrexone
In 2015 desperate for energy and to end the advancement of Relapsing Polychondritis 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.
The limited energy is spent on insurance claims, doctor appoints 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. Many intelligent he intelligent people who are genuinely trying their best to improve society fill our world. 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 most
The importance of Disability Insurance
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: 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. The terms and conditions that most private disability insurance policy offer the user a wider definition of disabled. In addition , 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 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. If you are thinking about disability insurance to secure your family well being please move forward. 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 each hour, each morning to start my day and each day can be unpredictable. My windows for being productive are often short and sporadic. Unless you have a chronic illness, it can be difficult to understand.
Who am I now? Some people have told me that I have learned so much from my medical experiences, and I must be thankful to have had this medical odyssey. I always answer no; I want 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 shop to you drop a day with my girls. But, as the saying goes, “When life gives you lemons, you learn to make lemonade.”
My Best,
Lisa aka HypoGal