Endopocalypse

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After being diagnosed with endometriosis last year, I have been increasingly interested in the stories of women who have suffered from this disease. While looking for such memoirs, I stumbled upon Endopocalypse and was drawn to its dramatic title, and its subtitle that reads: “It Won’t Kill You, but it will make You Wish You Were Dead.” Finally! Here was someone who got just how painful this disease is! I started reading and immediately found myself relating to the pain that Nicole Jones suffered.

Endopocalypse by Nicole A. Jones
Endopocalypse by Nicole A. Jones

In her memoir, Nicole Jones describes her deteriorating health due to endometriosis. At one time, Nicole was healthy and physically active. Over time, though, she began to suffer increasingly severe pain and gynecological symptoms. These symptoms quickly became all-consuming, disrupting her work and family life.

Nicole describes the doctor’s appointments, the differing diagnoses, and the lack of proper treatment for women suffering from endometriosis. She writes about the difficulties of balancing work and a major illness. The inability of doctors, coworkers, and family to take her pain seriously is a recurring problem in the months of pain described in this memoir.

No Happy Ending for Women with Endometriosis

The book ends on a sour note. Nicole has refused additional hormone therapy because the therapy is not proven to help endometriosis and comes with severe side effects. Her daughter and husband are angry with her for not taking the hormones, and she is forced to manage her pain.

There is no cure for endometriosis. For decades, doctors have used hormone therapies to try to mask the symptoms. Those experiencing only mild symptoms may find birth control pills manage their symptoms well. Others endure hormone injections (either Depo Provera or Lupron) that (1) are expensive, (2) don’t work, and (3) cause often long-term side effects.

My Own “Endopocalypse”

I was diagnosed with endometriosis in 2019 after a laparoscopic surgery in August. During the surgery, the doctor removed some of the endometriosis. He prescribed Orilissa, which was then denied by my insurance. My insurance insisted that I try Lupron injections first.

In my desperation, I was willing to try anything. Immediately following my Lupron injection, I went to the hospital because the injection was causing me to be dizzy and disoriented. But the next day I felt great. For five weeks, I felt relief from my endometriosis pain. The injection, however, was supposed to provide twelve weeks of relief.

The pain came back, and with a vengeance. As of writing this, I am waiting to see an endometriosis specialist. I have watched as my body has endured the side effects of this medication. Most notable is the damage done to my thyroid and the near-constant joint pain I now experience. Both of these are documented side effects. When I asked my doctor, he said the “only” side effect I would experience was hot flashes. Talk about a bait and switch!

The Solution I Wish the Author Had

As heartbreaking as Nicole’s memoir is, her experience is not abnormal for those suffering from endometriosis. Lack of qualified care causes many women to go untreated or mistreated.

Many women have found relief through excision surgery done by a qualified surgeon. On Facebook there is a group called “Nancy’s Nook.” Here, qualified doctors are listed. This way, patients can get the care they need from doctors with experience removing all of the endometriosis during surgery. Those who undergo excision from a qualified doctor often experience at least a decade of relief.

This Tuesday I see the “Nook” doctor for the first time. I have a lot of hope, although there are still a lot of questions. Can the damage done to my body by the Lupron be undone? Will the surgeon, though qualified, take me and my pain seriously? Like Nicole’s memoir, my story is still unfinished.

Review Breakdown

Writing – The writing was bad. Her writing read like it was written by a high school student, with sentence fragments and an excessive number of ellipses. I am also fairly judgmental toward anyone over the age of fifteen who uses the term “frenemy” to describe someone. She frequently referred to a coworker of hers as her “frenemy.”

Story – The story itself was interesting. It was a glimpse into the emotional and time-consuming process of getting a diagnosis of endometriosis and finding treatment. For those unaware of the pains of the process, this book gives helpful insight.

Mature Content – There is not much for mature content, beside graphic descriptions of medical problems and a fair amount of profanity.

Likability of Author – Nicole was immensely unlikable. Her husband seemed like a pretty terrible person, but some of her complaints about him made her sound petty. For example, she spent an extended amount of time writing about how one night she went to bed to watch TV. When he joined her, she said she could move to the living room, but he said he was okay with the TV. To her irritation, he pretty soon asked her to turn it down. This made her irrationally angry (as she readily admits). While this and her commentary on her relationships with other friends and family give insight into the emotionally taxing nature of this disease, her willingness to put these thoughts into writing was offputting. Again, her use of the term “frenemy” did not do anything to endear her to me.

Quick Review

This memoir is a helpful glimpse inside the experience of a woman suffering from endometriosis. Although it was poorly written and edited and provided an unflattering portrait of the author’s personality, I would still recommend it to those who want to understand what life is like for those suffering from endometriosis. Despite the extreme nature of her descriptions, I found her own experience with endometriosis to be very similar to my own.

In the Key of Genius

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Against all odds, Derek Paravicini developed an extraordinary skill for playing the piano. Born premature, the treatments that saved his life also left him blind. Learning disabilities that left him largely non-verbal in his formative years also made teaching him a challenge. In the Key of Genius is his story as told by his lifelong piano teacher, Adam Ockelford.

In the Key of Genius by Adam Ockelford
In the Key of Genius by Adam Ockelford

After Derek’s mother had already had several miscarriages, she was not hopeful that her premature twins would survive. After labor, the doctors laid aside both children, assuming they were dead. When a faint crying was heard from one of them, they jumped into action, saving Derek’s life. Unfortunately, the oxygen therapy they used to save his labored breathing caused him to lose his eyesight. The family had a woman they called Nanny help with Derek’s extensive care needs. Realizing his need for playthings with sound, Nanny moved a keyboard into the nursery. By the time he was two, Derek’s seemingly aimless playing turned into music. Members of the family began to recognize the tunes he was playing. They were amazed by the skills this toddler displayed in front of a keyboard.

“How could it be that this little boy, just over two years old, totally blind, virtually unable to speak and apparently able to understand very little of what was going on in the world, had taught himself to play the keyboard – something that she couldn’t even do herself?”

Adam Ockelford

When it came time for Derek to begin attending school, he visited Linden Lodge School for the Blind in London, where he met Adam (the author). Although Derek did not attend Linden Lodge for a couple more years, Adam began to tutor him. Derek’s unique mix of disabilities made him a challenge to teach, but Adam wanted to nurture his natural musical abilities. Despite some hesitancy from his mother, Derek took his first major concert at the age of nine. He received opportunities to appear on TV and in documentaries. As Derek outgrew Adam’s scope of abilities, Adam helped find tutors to stretch him. Adam helped Derek grow into the gifted pianist he is today. Derek now travels around the world and performs for varied audiences.

Derek had an incredible genius for music.

Although there is sheet music with raised notes so that those who are blind can read it, Derek listened to songs and then reproduced them from hearing alone. He learned them over long periods of time, filling in the pieces as he became more familiar with them. Once the song was in his long term memory, he could recall it to perform for listeners. Derek memorized thousands of songs, all of which he learned by ear only.

Derek’s disabilities only made what he accomplished musically more extraordinary.

Without any of his disabilities, his musical accomplishments are extraordinary. If a person with perfect sight and no learning disabilities learned to play the way he did, they would be praised for their talent. Adam Ockelford stresses throughout the book that Derek is not a “blind pianist” but a “pianist who is blind.” Leading with his gifts instead of his weaknesses is important.

Derek and Adam’s story reminded me of the importance of long-term mentoring.

At the point of publication, Adam had been mentoring Derek for nearly two decades. He was not just Derek’s piano teacher, but a dear friend to the family who helped Derek in all areas of his life. Adam helped position Derek’s career as a concert pianist. He worked with Derek through very turbulent years. When Nanny grew ill, he took Derek to visit her for the last time and then helped him after her death.

While I certainly won’t mentor someone into becoming a concert pianist, being a mentor like Adam is something I have a strong desire to do. Pouring into the life of another person and nurturing them to be their very best could add richness to my life. I have mentored some students over shorter periods. But the idea of mentoring someone over a period of years, or decades even, is exciting. The potential for growth on both our parts is extraordinary. There would be challenges, but the growth would be worth it.

Quick Review:

This was a great story with good writing. It was a quick read, which was especially nice after reading a few longer books. While there was some heavier content, there was also a lot of humor sprinkled in, keeping the pace and the tone of the book overall easy to read. My only real complaint were a few strange features in the writing, like several places where the author used two of the same word in a row, like “that that.” Other than that, it was well-written and enjoyable.

 

Do you have a mentor? Do you mentor someone? Share your stories below!

Misdiagnosed

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Jody Berger shares her emotional story of being misdiagnosed with MS in her book Misdiagnosed. She writes about the doctor who moved too quickly to diagnose her, the treatments that seemed to do more harm than good, and her search to find the real cause of her health problems.

Misdiagnosed by Jody Berger
Misdiagnosed by Jody Berger

When Jody Berger received an MRI in an attempt to find out what was causing the tingling in her hands and feet, she did not expect the doctor to come back with a diagnosis of MS. When she began to ask him questions about how he came to the conclusion he did, he told her that it is the diagnosis he gives most women like her: young, athletic, and female. Unsatisfied with a diagnosis based on a short appointment and spinal tumors that could have several causes, she questioned the diagnosis. The diagnosing doctor insisted she start medication right away to prevent permanent damage. Not wanting to make things worse, she began medication that ended up exasperating her symptoms. After a short period of time, she stopped them and began looking for a second opinion.

“I was starting to believe that we all see only what we are looking for.”

Jody Berger

Jody visited about half a dozen doctors and received just as many diagnoses. One thought that she was deficient in certain vitamins. Another thought she had a heavy metal toxicity and started her on a treatment to clear that out. After the treatment made her feel worse, she realized that could not be the answer, either, and continued her search. Finally she found a doctor who worked with her to look at her entire health history to find the root of her health problems. Throughout her childhood she had intestinal distress with unknown causes. As an adult, she had different problems with her stomach. She did not know these issues could be related to the tingling in her hands. After completing an elimination diet, she and her doctor found that she had an extreme sensitivity to gluten. When she eliminated it from her diet, her body returned to normal.

I found myself relating to Jody’s misadventures in healthcare.

While I have not received a misdiagnosis as shocking as MS, I was able to understand some of the suffering that comes with being misunderstood and mistreated by doctors. While they are mostly well-meaning, sometimes they are unable to take the time they need to get to the root of what is wrong with a patient. Other times they are looking at things through a certain lens, biasing their view of their patient and their condition.

Two years ago I began to have terrible pain in my right leg. In addition to the pain, I had swelling and redness. It got to a point where my husband and I went to the hospital. I received tests to rule out blood clots because a medication I am on puts me at increased risk. Although the tests did not show any blood clots, the doctor told me that it was venous thrombosis (which is a blood clot!). He put me on medication to thin my blood and sent me on my way, telling me that if anything changed I should come back to the ER.

When the pain increased and the redness got worse, I went back to the ER. The second doctor who saw me was confused at my worry and the first doctor’s diagnosis, and said that my leg must have some sort of injury or nerve damage. The redness was caused by a skin infection, but the pain and the redness were unrelated.

I ended up seeing a super weird doctor next.

I was referred to my family doctor, who tested me for diabetes and sent me to an acupuncturist to get a nerve conduction study. While the doctor there was putting needles into my legs, he asked me questions. He asked if I had any other conditions. I mentioned that I get migraines, and his entire attitude toward me changed. “I’ve noticed migraine sufferers have a low tolerance toward pain,” he said. Our entire conversation was then colored by his view of what “migraine sufferers” were like. He would comment about how strange it was that my legs were so cold. Whatever his comments, he tied them back to my being a “migraine sufferer.”

Finally, when he asked if I had any trauma in my past, I mentioned that I had been abused by a boyfriend. I wasn’t sure how it was relevant, but why not answer the questions? The test wrapped up and I put my clothes back on. He said the test did not show anything abnormal, but it was his opinion that my leg wasn’t injured. It was my unforgiving spirit that was keeping me in pain. Until I could forgive people, I would be in pain. I guess that’s a medical diagnosis now.

“Throughout my journey, I’d come to realize how many people get locked into misdiagnoses and then have to suffer the consequences.”

Jody Berger

I am not sure what he sent my family doctor, but I still don’t have answers. After a family member got diagnosed with sciatic nerve issues, I began to see the similarities between our problems. Since then, I’ve looked up sleeping positions and stretches to help and the pain has lessened. Still, it has been a very strange adventure.

Quick Review:

This is a bizarre adventure worth taking if you are interested in the world of modern medicine. While some of Jody Berger’s views are not ones that I hold, I believe that her search for answers in the face of a dark diagnosis can be an inspiration to others. Her writing style is excellent, likely because of her journalism experience. She brings to life the emotions and frustrations of her fight against an unfair diagnosis.

 

Do you have a misdiagnosis story? Share in the comments below!

438 Days

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When the cover of the book 438 Days says, “an extraordinary true story of survival at sea,” it is not an overstatement. Salvador Alvarenga, a deep sea fisherman, survives fourteen months at sea in a small fishing boat. Although this story made me want to vomit at times, it might be one of the most inspirational books I have read in a long time.

438 Days by Jonathan Franklin
438 Days by Jonathan Franklin

Alvarenga and Cordoba were both deep sea fishermen. Alvarenga had decades of experience, and young Cordoba had only a couple of years of experience at sea, much preferring not to go too far out to fish. During a storm, Alvarenga looked for someone to go out to finish hauling in a catch, and ended up hiring Cordoba for the job.

However, during this storm (which was a common occurrence in the area of Mexico where they fished), they lost use of the engine. When they radioed for help, their GPS, which was not waterproof, was ruined, so they could only give a visual account of where they were, about twenty miles off shore, with no motor or sails. Right after their desperate plea for help, the radio died, and they were pushed further and further out to sea. Despite a three day search, they were not found.

Four months into their journey, Cordoba slowly died of starvation. After eating a bird that had a poisonous snake in its stomach, he was too frightened to eat any more birds, a necessary part of their survival diet. Despite Alvarenga’s pleas for him to eat, he refused. He begged Alvarenga not to eat his body, and then died. Alvarenga spends days speaking to his dead friend as if he was alive, despite his friend’s body turning purple, then black from exposure to the hot sun. After several days, he slipped his friend’s body into the ocean. As I read this, I was sad for the loss of Cordoba and relieved that Alvarenga did not consume his friend’s body.

“He considered scratching messages or a count of full moons on the inside of his home but both ideas felt like capitulations etched by a dying mariner. Alvarenga planned on telling his survival story in person.”

Jonathan Franklin

Alvarenga spent the next ten months in complete isolation. In order to survive, he had to do some disgusting things: drink turtle blood, eat raw birds and fish, put urine in his ears to treat an ear infection, and eat the organs of animals for essential nutrients.

Although the journey took an immense toll on his emotional health, the previously non-religious Alvarenga took the time to pray, impacted by the faith of the deceased Cordoba. He also vowed not to kill himself, desiring to be an encouragement to those contemplating suicide. He believed that if he could survive the time he spent at sea, he could encourage others not to kill themselves because of situations they might find themselves in.

More than anything, though, Alvarenga kept going because he wanted to be reunited with the daughter he had abandoned years earlier when she was only one year old. At the end of his journey, he thought about the thirteen years he had not been a part of his daughter’s life because of a gang feud that caused him to flee, as well as his desire to party and enjoy life. None of that was as important to him as a relationship with his daughter.

After thirteen months at sea, the biggest blow to his psychological health was being very close to a large boat and not being rescued. Three men on the boat even waved to him, seeing him clearly, yet did not attempt to rescue him at all. This event sent him into a deep depression. Had he not hit land less than a month later, his health likely would have deteriorated even further.

The best part of this story is that it has a happy ending. Alvarenga reached a very remote island, where a couple who did not speak his language extended great hospitality to him, despite their limited resources and their fear he might harm them (he is, after all, holding a knife when they find him). He was then transported to a more populated island, where he could receive medical treatment, and was asked questions to verify whether his story was true or false. The media picked up his story and he was overwhelmed by the media interest in him.

He was eventually taken home to his daughter and parents, where he was able to rebuild that relationship. He took a trip to the town in Mexico where he used to fish, so that he could talk to his previous employer about what happened. He also talked to Cordoba’s mother, letting her know about Cordoba’s last days. His health continues to improve, as does his relationship with his daughter.