Book Review and Interview: Joshua and the Shadow of Death

A couple of months ago, I was asked to write a book review on the first novel in the Berserker Series called Joshua and the Shadow of Death by author Gary McPherson. Unlike most of the literature that I spotlight and/or review on this blog page, which generally consists of a combination of published medical research, chronic illness self-help books, and occasionally other forms of scientific or non-fiction-type writing, Joshua and the Shadow of Death is a fictional thriller that is premised on resolving the mystery behind the suicide of Harold’s adoptive father, Richard Brown, as written from the perspective of the family’s psychiatrist and personal friend, Joshua Zeev. In cohorts with Dr. Zeev to resolve the remaining questions left behind in the wake of Mr. Brown’s tragic death, a significant portion of the story-line of this book centers on Harold’s (or Harry as Dr. Zeev calls him) mental health and controlling the symptoms of a rare, hereditary psychological disorder known as Berserker Rage Syndrome or Blind Rage Syndrome.

The chief symptoms of Berserker Rage include “sudden, impulsive, uncharacteristic violence” in which “the usually nonviolent, peaceable patient savagely assaults others (often strangers); experiences amnesia during episodes of ‘blind rage’; angrily overreacts to an actual external stimulus toward which the rage is directed; episodically exhibits extraordinary physical strength and relative immunity to injury; and is, by definition, not under the influence of drugs or alcohol, brain damaged, nor suffering from other major mental illnesses” (Diamong, 1996, p. 167-168). This exhibition of both violent and aggressive behavior amid those affected with Berserker Syndrome, however, theoretically results from the presence of monoamine oxidase A (MAOA) genetic variants – some of which have traced back to the historically debated “Berserker Vikings,” a legendary and “sinister brotherhood of warriors” originating from Scandinavia that were perceived social outcasts because they burgeoned “on the border between life and death, fueled by war and distinguished by the ecstatic battle fury” while stuck in trance-like state (Hjardar, 2018, para. 2). Interestingly enough, my own genetic testing affirmed that I also have what is called “The Warrior Gene,” which is extremely fitting considering the amount anger, rage, and frustration I have personally experienced not only in learning to live with multiple rare medical conditions, but also in learning how to deal with the difficulties in communicating my own pain and symptoms to friends, family, and the medical community as a whole.

At this point in time, the American Psychiatric Association has yet to formally categorize the constellation of symptoms associated with Berserker Rage Syndrome as its own entity in the Diagnostic and Statistical Manual of Mental Disorders (DSM) outside of the more general psychiatric diagnosis of Intermittent Explosive Disorder (IED), which is a type of “impulse control disorder marked by problems controlling emotions and behaviors, and result in behaviors that violate social norms and the rights of others” (Coccaro, 2018, para. 1). However, Berserker Rage Syndrome is still clinically perceived as a legitimate psychiatric condition by many mental health experts, who argue the difference between the two conditions is that Berserker’s includes the genetic predisposition towards violent and aggressive behavior and thus programmed into the nervous systems of Berserker patients via explicit heredity patterns as demonstrated in a multitude of other physiological and psychological behaviors and disorders throughout human evolution. Accordingly, one of the primary challenges in unravelling the conspiracy behind Mr. Brown’s suicide concerns Harold’s ability to not only overcome the overwhelming sense of grief and loss over the death of his adoptive father (and, later, his mother), but also learning how to deal with the functional limitations of a mental health condition that’s no fault of his own in order to have the strength uncover the surprising and truths hiding just beneath the surface of consciousness in this novel.

In addition to being given an opportunity to both read and review this book, however, I was also provided the privilege of interviewing the author of Joshua and the Shadow of Death, Gary McPherson, to converse about his own experiences in living and working with a chronic rare condition called Behcet’s Disease (along with some other chronic comorbidities) as well. For those of you who aren’t familiar with Behcet’s, this syndrome is best described as “a rare, chronic, autoimmune, autoinflammatory disorder of unknown origin. Its manifestations are thought to be caused by vasculitis resulting in damage to blood vessels throughout the body” (American Behcet’s Disease Association, 2014, para. 1). The principal symptoms presenting in this condition include the onset of flu-like symptoms, painful round or oval sores on the mouth and/or genitals, acne-like sores and pus-filled lesions on the skin, nodule development on the front-side of the legs, eye inflammation or blurred vision, vasculitis or thrombophlebitis in both the small and large veins, central nervous system dysfunction, and joint pain, swelling, or redness just to name a few (Genetic and Rare Diseases Information Center, 2018). Although Behcet’s is clearly a physiological disorder in nature – as opposed to Berserker’s Rage Syndrome, which is a psychiatric condition – there is still a definitive connection between the author’s personal history both in being adopted and later receiving a diagnosis of a relatively rare genetic disease and the character development of Harold. As with most things in life, we all know there is often some hidden truth laying buried within the fiction and the line used to separate physiological and psychological ailments is vividly fine at best. Nonetheless, here are McPherson’s answers to my interview questions pertaining to how this devastatingly rare, genetic disorder impacted his life and work – both leading up to and following diagnosis.

In the press release released by JKS Communications, it states that you did not receive a diagnosis of Behcet’s disease until you were 32 years old. When did you first start to experience symptoms and how long were you “undiagnosed” for afterward?

I first exhibited symptoms at 9 weeks old. I had crops of sores coating my mouth and throat that lasted a couple of weeks, according to my mother. I was unable to take a bottle. It was very traumatic for her. I continued to have those symptoms, including very high fevers, very high white blood cell counts, and other symptoms up until I contracted Uveitis at age 32. Uveitis led the doctors down the correct path to my diagnosis.

How many doctors did you visit before you received a diagnosis?

In the year they diagnosed me alone there was a team of five ophthalmologists, my primary care, and a team of rheumatologists—I dealt only with the rheumatologists’’ expertise in Behcet’s.

Did any of your doctors minimize your symptoms and/or infer that your condition was “all in your head”? If so, how did that make you feel at the time and did it influence your career as a writer?

The bigger issue was doctors misdiagnosing. I have been tested for everything from Herpes to Leukemia to AIDS. That experience did influence my writing of Joshua and the Shadow of Death. Joshua’s misdiagnosis and trial and error with Harold’s childhood are part of what drives Joshua’s narrative in this first novel.

What was the hardest part about waiting for a diagnosis?

Being adopted, I never knew if it was a common genetic problem, or worse if it was something I could pass on to my spouse. There were times I wondered if I would survive, with good reasons. I once survived a fever of 110 degrees. When I was diagnosed at age 32 the symptoms were so advanced; I was given less than 5 years. That was 20 years ago. I keep telling my doctors to hang in there, one of these years they’ll be correct.

The press release also mentions that your “battle with Behcet’s, which has also caused Fibromyalgia and Fibromatosis, make it difficult to physically type” and “slow” down your writing process. What type of things help you to overcome the physical limitations of your conditions on really bad symptom days?

When people would ask me this question in the past, I used to joke that it was better living through Chemistry. Unfortunately, my body is now resistant to common, opioid-based, pain medicines. There are a couple of muscle relaxers I can tolerate in very low doses. Unfortunately, the way I deal with it today is to stop writing when I have a really bad day. To help offset this, I try to take advantage of the good days. On average, I can get in two hours a day, three days a week before needing to take a day off. In the winter it’s less than that.

Do you find it easier to work through pain or take a break if your body is telling you to do so?

I have learned it is better to take a break. I used to try to fight through it. The result was either gibberish on the page or a version of writer’s cramp that would lock my fingers in place for up to two days, even with muscle relaxers. Dealing with the ever-progressive pain has been the toughest part at this point in my life. In my younger days, I worked as an IT Manager, and I was full speed for 365 days a year. It’s been tough learning to put on the tortoiseshell and slow down.

Which symptom(s) do you think limits your ability to write/work?

I have tendonitis and Fibromyalgia in my hands. Also, I have neuropathy in my forearms. All three of those together are what stop my writing on a normal day. Although Behcet’s has taken its toll, it’s these secondary symptoms and diseases that have finally knocked me down several notches. In addition, I injured my back when I was in my early 20’s. Behcet’s loves to go after areas that are already damaged. So, sitting or standing for too long can make me forget about my hands, in a bad way.

There are a lot of running themes and interesting characters, relationships, and critical subjects that are touched on throughout Joshua and the Shadow of Death. How did your personal experiences in having a rare disease and other chronic illnesses influence you to include these elements in the book during the writing process?

For the first book in this series, I wanted to do something different. I’m telling the story from the doctor’s point of view, as opposed to the characters with the disease. By thinking through how people see me and my challenges, Joshua and the Shadow of Death gave me an opportunity to allow the reader, and myself, to experience what it is like to have an unknown condition from the viewpoint of people close to the patient, as opposed to the patient. Of course, this is a mystery thriller, so I took that relationship dynamic and placed it into the thriller narrative.

Out all the main characters in the book, who do you think you personally resemble the most and why?

I love answering this question because it is an easy one. Harold is 100% me. From his sense of humor, his need to protect his friends and family, to his medical condition. I only wish I was 6 foot 5 instead of 5 foot 8.

Was there a reason that developed the plotline of the book around psychiatric illness rather than chronic illness? If so, why?

There is a twist to my real-life story. I am adopted. My adoption left us with a big mystery even after successfully diagnosing Behcet’s. It is very rare in the U.S. 25,000, give or take, but in the Middle-East and East, it is a common disease. My bright blue eyes, fair skin, and bald head with a touch of gray on the side do not appear to be all that Eastern. For the disease, it turns out my unknown father was of Turkish descent. My birth mother had immigrated to the U.S. with her family from Denmark, so I’m half Danish. Being half anything in the U.S. is exciting since, as Bill Murray put it once in Stripes, “We’re all mutts.” Researching Dane’s history brought me to the Vikings and the Berserkers. That gave me the idea of creating two orphan half-brothers who did not know they were berserkers in modern-day America. This series gives me the ability to pull in every angle of my life.

Do you know anyone, or have you ever met anyone, with Berserker/Blind Rage Syndrome?

There are a lot of stories with people going “Berserk” in battle or emergencies in contemporary times. The Berserker in this series is a combination of fiction and fact. I researched original legends, as well as original “accounts” by the Vikings as well as their enemies. I also researched modern-day examples of people going “Berserk.”  I took all this information and created a modern-day Berserker.

Managing health and wellness when you have a chronic illness and/or rare disease is often maddening at times and it’s easy to see how you made the connection between the Berserker Legend and Behcet’s Disease. Has your experience with have Behcet’s Disease, Fibromyalgia, and Fibromatosis ever sent you into an episode of rage? If so, can you give an example and discuss how the episode was resolved?

When I was young, crops of mouth sores were common. Growing up in the ’60s, ‘70s and early ‘80s, roughhousing was common. Unfortunately, hitting me in my mouth when I had sores always triggered a rage. My older brother, who could easily take me as a kid, ended up on the wrong end of my rage one day. He accidentally hit my mouth when we were roughhousing, and I ended up knocking out one of his baby teeth. He got tooth fairy money, so it ended okay. Normally I would hit inanimate objects as I do not hit people as a habit.

Do you have any advice for those living an undiagnosed physical or mental illness on how to get a proper diagnosis and/or the best medical care?

Be your own advocate. Make sure you keep copies of your medical records. There is a lot of groupthink in the medical community. If you have a rare, or unknown disease, try and find a doctor who is open-minded and willing to research every possibility around your condition.

I would add there is a new wrinkle with modern medicine: WebMD and other online medical sites. One of the worst things you can do is tell your doctor you read something online. The exception to this scenario is finding information from medical colleges. I was very fortunate; I started my career at Microsoft in 1992. I had access to the internet before people knew what that was. When I was diagnosed in 1997, I knew how to query and bring up research papers from places like MIT or Boston College. Take the time to educate yourself on how to find medical information your doctor will value. My doctors were always impressed with the medical school articles I would bring to them when I had questions on experimental treatments or possible complications.

What advice would you give to other inspiring writers that may be suffering from a chronic and/or rare disease?

First, if you want to earn an income writing, this is a marathon, not a race. Even healthy people can take years to see their work produce an income that will support them. My financial goal with writing is to one day be self-supporting again.  As I like to say, at 52 I prefer to be depositing into Social Security, not requesting an early withdrawal because my body has managed to disable itself.

Let’s put aside economics and focus on the craft. The most important advice I can give is this, permit yourself to work at your own pace and style. That action will set you free to write the way that works best you. The biggest killer to the creative process, in any discipline, is the inability to create in your way. (G. McPherson, personal communication, December 7, 2018).

If you’d like to purchase a copy of Joshua and the Shadow of Death,

please visit one of the following online retail locations:

References:

American Behcet’s Disease Association (2014). Behcet’s Disease. Retrieved from http://www.behcets.com/site/c.8oIJJRPsGcISF/b.9196317/k.904C/Behcets_Disease.htm

Coccaro, E. (2018). Intermittent Explosive Disorder in Adults: Treatment and Prognosis. Retrieved from https://www.uptodate.com/contents/intermittent-explosive-disorder-in-adults-treatment-and-prognosis

Diamond, S.A. (1996). Anger, Madness, and the Daimonic: The Psychological Genesis of Violence, Evil, and Creativity. New York: State University of New York Press.

DNAexplained (2013). The Warrior Gene. Retrieved from https://dna-explained.com/2013/06/16/the-warrior-gene/

Genetic and Rare Diseases (GARD) Information Center (2018). Behcet Disease. Retrieved from https://rarediseases.info.nih.gov/diseases/848/behcet-disease

JKS Communications (2018). Gary McPherson Examines the Beast Within in His Breakthrough Thriller. Retrieved from https://www.jkscommunications.com/gary-mcpherson-examines-the-beast-within-in-his-breakthrough-thriller/

McPherson, Gary (2018). Joshua and the Shadow of Death. Charlotte, NC: Author.

McPherson, Gary (2018). The Berserker Series. Retrieved from https://gmacwriter.com/

Unidimensional Approach to Medicine: Why It Isn’t Working

From a global perspective, a multidimensional approach to health and wellness has long been considered the gold standard for both diagnosing and treating physiological and psychological illnesses or disease. Even the most widely used definition of health, which comes from the World Health Organization (WHO), defines health as being “a complete state of physical, mental, and social well-being” (Gurung, 2014, p. 6). However, the United States focuses the majority of its interventional programs and healthcare management around the traditional medical model of health – a unidimensional approach that provides a simple black and white definition of health in terms of simply lacking disease. According to Shi & Singh (2009), the medical model “emphasizes clinical diagnosis and medical intervention in the treatment of disease or its symptoms. Under the medical model, health is defined as the absence of illness or disease. The implication is that optimum health exists when a person is free of symptoms and does not require medical treatment; however, it is not a definition of health in the true sense but a definition of what is not ill health” (p. 28). The efficiency of the medical model in health is highly debatable and has proven to be ineffective in managing the overall health and wellness of the American population thus far. “Many of the peculiarities of this system can be traced back to the beliefs and values underlying the American culture. The delivery of healthcare is primarily driven by the medical model, which emphasizes illness rather than wellness. Even though major efforts and expenditures have been directed toward the delivery of medical care, they have failed to produce a proportionate impact on the improvement of health status” (Shi & Singh, 2009, p. 46). As we have learned throughout this semester, assessing health from a multidimensional approach is far more practical, especially given the complexity of health and health-related behaviors. Still, much of the contemporary model of health in America is still based primarily on the medical model of health for a number of reasons.

For instance, one of the key explanations that Americans rely solely on the medical model is that have had little to no exposure to other medical models of practice. It’s human nature to stick with what is comfortable and changing behavior or perspective is often a difficult and tedious process. Considering that both psychologists and medical professionals have long developed interventions and treatment programs around the medical model, primarily because it centers around what they’ve learned both in school and in clinical practice, it’s difficult to move away from the medical model as the accepted norm for managing health. As Gurung (2014) mentions, there are three main obstacles that prevent health-related interventions from reaching the clinical populations they have been designed for: “(1) researchers not always understanding the clinical applicability of their basic research; (2) a reluctance of clinicians to accept the value of their basic research; and (3) various institutional-level constraints such as the lack of time, training, or funding” (p. 435).  All of these become problematic in approaching health from an alternate perspective because the lack of knowledge or evidence drives enough motivation for change. For example, both training programs and continuing education for health practitioners don’t generally educate on the biopsychosocial approach health, making the idea seem even more unfamiliar or accepted. “Only a few existing programs provide the necessary training to facilitate the development of health collaborations, and this is another key training area for the field to incorporate” (Gurung, 2014, p. 435). Similarly, since the biopsychosocial approach is relatively new in terms of research and practice in the United States, despite being around for centuries in other cultures around the world, there is just not enough evidence not clearly support or influence professionals to transition to the biopsychosocial approach. Finally, healthcare professionals are reluctant to move away from the current medical model, even when they strongly believe in the biopsychosocial approach to health because of the financial burden it places on both themselves and their patients.

Many of the biopsychosocial approaches to health care and management often are reimbursed by insurance under the current medical model of health and billing becomes problematic with the limited availability of medical codes that are acceptable for what insurance sees as unnecessary, experimental, or alternative treatment options. For example, there are six codes that clinical health psychologists are permitted to use and only certain health plans accept all six of the codes. Medicare, for instance, accepts only five of the six CPT codes for insurance reimbursement (Gurung, 2014). “Not being reimbursed by insurance companies has been one of the biggest reasons for not enough attention being paid to psychological factors and treatment – most patients cannot afford to take care of their mental or physical health if their insurance refuses to pay for the services they need; if health providers do not get paid, they cannot afford to conduct research” (Gurung, 2014, p. 437).  Also, the diagnostic codes for mental illness are subjected to the scrutiny in a similar manner as CPT codes. Take the treatment of mental illness, for example. According to McLeod (2013), “psychiatric diagnostic manuals such as the DSM and ICD (chapter 5) are not works of objective science but rather works of culture since they have largely been developed through clinical consensus and voting. Their validity and clinical utility are therefore highly questionable, yet their influence has contributed to an expansive medicalization of human experience” (para. 38). Assessing and diagnosing patients under psychological or psychiatric care also becomes an issue in terms of credentialing, which can vary state by state, and ethical concerns have been raised about psychology professionals both diagnosing and treating patients without a traditional medical license. Although there is increasing evidence of the effectiveness of the biopsychosocial approach to medicine and health, there likely won’t be any advancement in moving the healthcare system of the United States over to a biopsychosocial approach until many of the above issues have been formally addressed and regulated.

Aside from the limited exposure to the biopsychosocial model in terms of professional utilization, the American public will likely remain reluctant in accepting a multidimensional approach to health for additional reasons outside of the current system of healthcare. For starters, the public overall lacks general knowledge in proper management or coping skills in dealing with health. Most of the information that is accessible to the public is both overwhelming and confusing, and many health reports provide conflicting information. Take the question of “what is the best diet?” for example. It has been ingrained in us from a young age that in order to be “healthy” we need to both eat right and exercise regularly. However, this concept often brings up more questions than it does answers. For instance, what is healthy to eat? What is a balanced diet? How much and when should I eat? How much should I exercise? What type of exercise? The questions are nearly endless. For those looking to change health behaviors, such as diet or exercise, often look for answers to the questions above. However, it’s likely to cause more confusion since there is no consensus or definitive evidence that constitutes right or wrong answers in this specific example. This becomes more evident in reference to the difficulties in defining the term health, as there are too many aspects to account for defining optimal health, making it challenging despite the growing number of theories regarding health and wellness.

Lastly, the importance of practicing healthy behaviors is, unfortunately, deficient within the modern American culture. As I mentioned earlier, both lifestyle choices and behaviors are among the chief determinants of health, however, initiating or activating behavioral change is extremely difficult to achieve and maintain over time. It’s human nature to be uncomfortable with self-awareness and often resistant to acknowledging their own unhealthy or negative habits that may contribute to health. Changing over to a biopsychosocial approach “would require a fundamental change in how Americans view health. It would also require individual responsibility for one’s own health-oriented behaviors, as well as community partnerships to improve both personal and community health” (Shi & Singh, 2009, p. 47). Once again, the lack of biopsychosocial approaches to interventional health behavior contributes to the minimization of healthy behaviors or practices and not all practitioners are sold on solely a biopsychosocial approach. “Surprisingly, not all parts of the scientific community saluted the importance of health behaviors, a controversy in the field of health referred to as the great debate” (Gurung, 2014, P. 423). Furthermore, the American culture has become increasingly sensitive about discussing health behaviors as to not offend others around them and there is limited knowledge of the health disparities affecting the majority of the population in one way or another.

Still, despite the number of obstacles still left to overcome, the biopsychosocial approach to medicine and health is slowly gaining momentum in the United States.  As more patients are becoming increasingly frustrated with American health care practices under its current standards, Americans are considering alternative forms of treatment as an option for managing their health, including holistic medical practices and therapies focused on the mind-body connection. It’s likely that as the field of health psychology continues to expand while health care in the United States declines, both medical professionals and their patients will be more willing to change their opinion on the biopsychosocial approach to overall health.

References:

Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.

McLeod, S. A. (2014). The Medical Model. Retrieved on February 26, 2016, from http://www.simplypsychology.org/medical-model.html

Shi, L. & Singh, D.A. (2009). Essentials of the U.S. Health Care System (2nd ed.). Sudbury, MA: Jones and Bartlett Publishers.

Medical Testing Update Part 2.5: New Symptoms

Continuation from Medical Testing Updates Part 1 and Part .


The weekend before my next round of cardiac testing started off pretty average, at least as far as my symptoms anyway. Having just recently recovered from the peculiar reaction I had to the one dose of the new beta blocker the cardiologist prescribed (before I was taken off of it when additional cardiac testing was ordered), I was relieved to have a so-called “break”. While I’ve learned to manage life with my usual, everyday  symptoms, the real struggle happens when these symptoms either  intensify or another one jumps in the mix, making everything that much more complicated and impossible. I kept myself busy through that Sunday afternoon, trying to catch up on everything that had fallen behind and allowing myself to forget about the news from the week before. Perhaps it was all of the stress I was under, I dunno, but that night things everything began to take a turn for the worse.

too much

Given, I had been pushing both my mind and body past the limit by adding more and more things to my to-do list. Honestly, it was way more than I was capable of handling all on my own. Half of this was my own fault for saying yes to too many things, but the other half involved stuff that was dumped in my lap last minute and they were things that I had no choice but to fit into my schedule.  Either way, there was no time for any type of rest or recovery and I knew it wouldn’t be long until my body would decide to revolt against me for treating it so badly the last few weeks. Sure enough, I didn’t have to wait that long.

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Exhausted, I climbed into my brand new bed and was so excited that I’d finally be able to get a good night’s sleep before my cardiac MRI the following morning. It must have been about 3 a.m. when I was awoken suddenly by a pain in my chest. It wasn’t a sharp pain really. More of a dull, yet stabbing, kind of pain and I noticed that I was a little wheezy and that my nose was also starting to get stuffy. Am I getting a cold? Just what I need right now, with all I have going on. Hopefully, it is just allergies, I think to myself, and  I climbed out bed to find  some medicine so that I can go back to sleep. I take some additional allergy meds, aside from my daily dose, and hope that it’ll do the trick.

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I attempt to go back to sleep, but it was very short-lived. Just as suddenly as the ” cold-like” symptoms came on, next was the onset of extreme abdominal pain, generating from both my right and left side, and gradually moving into the small of my back. Usually, the abdominal pain is focused to my left side, although occasionally I feel it either just above my belly button or lower in my pelvis, just depending on the cause that day. The amount of pain with this, though, was unreal and I have a high tolerance for stomach pain.Shortly after the abdominal and back pain set in, both the muscles and joints in my hands, arms, legs, and feet began to swell  slightly, but they instantly became very  stiff, making it nearly impossible to find a comfortable way to lay down. Still, while the way that everything set in was slightly atypical for an incoming flare-up, it was nothing I hadn’t experienced before and I just assumed I had done too much. In fact, I was actually kind of grateful that it wasn’t a cold or virus coming on.

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At some point during the night, I must have fallen back asleep. My alarm woke me a few hours later and I was actually surprised that I didn’t feel worse than I did. Most of the symptoms from the night before (well, really a few hours before) had gone away, which again, I was grateful for as the ride to the hospital is about an hour and a half away. Not to mention that the MRI itself was supposed take anywhere from an hour and a half to two hours on its own, plus the drive time back. The unfortunate part of seeing doctors in a bigger city, it makes for a really long day.

Anyways, my husband and I get in the car and start the long trek to the main hospital. About 20 minutes into the drive, more random symptoms. All of a sudden, it felt like morning medications were coming back up and becoming lodged in my chest and throat. The nausea increased so hard and so fast, it took everything I had not to throw up in the car. I was plagued by a strong, metallic taste and my muscle began to burn. And not just burn, they felt like they were on fire.

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Yet, despite all these symptoms and how uncomfortable the car ride had become, I still wasn’t overly concerned.  I was just happy at the fact that I was having active symptoms during the time a test was going to be performed, hoping it would increase the chances for additional findings.

Sadly, this is what it has come to these days –

I’ve resorted to praying for illness and pain,

just so I can get some answers.

By the time I finish the MRI, symptoms are gone. Once we got home,  I decided to take a nap since I didn’t get much sleep the night before and, yet again, I awaken to -you guessed it- the same thing. If it wasn’t so painful, I would have been extremely angry and irritated but this time around, it was hard to convince me that I was truly burning from the inside out.

The only way I can describe this sort of pain I’m experiencing is by relating it to how it must feel just moments before you spontaneously combust.

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I’m in tears with how bad it burns. My skin is literally hot to the touch, unlike earlier in the day, and starting to change color. It looks like I have been out in the sun all day tanning, even though I obviously had not. There’s no bumps, no itchiness, no rash. Just burning. And it’s coming from INSIDE of my body –  just under the skin, almost on top of the muscles. No lotion or medication can relieve it, not even the arsenal I keep in my medicine cabinet.

Maybe I didn't roll enough...

Perhaps I didn’t roll long enough. 

And not only is the burning constant and consistent throughout 75% of my body, it  continues on for hours and hours on end, lasting approximately 9 hours before it was all said and done.

As if that wasn’t enough, other symptoms begin appearing as well during this “outbreak”. My heart starts racing, making my body feel like it  is running a silent marathon inside. Next I start trembling and shaking, only making me more dizzy and nauseous, before initiating more traditional feelings of pain to the right side of my face, including the throat and jaw. When the pain moved across my chest and down my left arm, I really got scared.

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Oh my god- I’m having a heart attack.

At least that’s what I thought anyway.  In all reality, though, I really wasn’t.  

But you can see how I’d think that given the most recent test results and the amount of stress I have put myself under lately.  I guess this was a friendly reminder that I need to make rest a bigger priority. Besides, have you ever looked up the common warning signs of a heart attack in women?
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I pretty much live with these symptoms every day.

How would I ever know if I was truly having a heart attack?

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Still, I have no idea what this was or the cause of it.Thankfully, the cycle stopped after just three days of on and off random symptoms, but I haven’t experienced any since. *Knocks on wood* 

Perhaps something was caught on my MRI. I guess I’ll ask about it at my follow-up appointment with cardiology if it comes back again.

new symptom


To be continued…

Wish You Could See


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What it feels like to be undiagnosed:

It happens slowly. First the tiredness and then the symptoms come on – one by one. You go to the doctor, expecting to go home with magic medicine and, soon, you’re going to feel better.

But what if that never happens? What if you never feel better?

Doctor after doctor examine you, trying to make sense of your symptoms.

They don’t have the answer, either.

Run this test or start that medicine.

The tests keep telling you that you are fine; You’re healthy as can be.

But you’re dying on the inside.

Some don’t believe that you’re sick; That it’s just all in your head.

You start to think maybe they are right.

But you keep searching for a cure anyway. Some way to manage your symptoms.

You spend your days learning medicine.

Medicine is no longer a science, it’s an art.

One you haven’t mastered yet.

You pray for a name, a label… Something, Anything

Something to make sense of it all- make sense of the pain inside.

To give you hope that someday it will get better.

Year after year that goes by – and every doctor that you see leaves you feeling even more lost than ever before.

You’re undiagnosed.

Left to be the ghost of who you used to be – and may never be again.


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The Problem With Being Undiagnosed?

1) You can’t use your benefits.

At some point, you may become too sick to work. You can apply for disability benefits through work, but more likely than not, they will deny you for lack of proof.

Yes, your symptoms are documented. You’ve been to every doctor in the world. Your list of medications is incredibly long. You have every test and procedure on record. But none of these supply objective proof that you’re sick. Nothing else matters, especially in insurance.

Same thing with Social Security Disability.

2) No one takes you seriously.

Friends, family, doctor’s, employers, etc.

If you don’t have a diagnosis, you must not really be sick. Or it’s in your head. Otherwise, the doctor would have found it….

While it’s wrong, it still happens. It’s also hard to explain the unknown.

3) You have no medical home.

When you’re sick, who do you call? You have so many doctors, which is a catch 22 if you have multiple symptoms. Call your primary care doctor… no, call your GI doctor.. the immunologist needs to handle that…You end up going in circles….

Plus, most of the time doctor’s are so busy and they don’t communicate with one another. So it’s on you to manage your own care. Who needs what notes? Who prescribes what med? Who is handling what paperwork? It’s exhausting.

Let’s not even talk about doctors dismissing you from their practice because “there’s nothing else they can do for you” -or- they believe you’re malingering -or- just want pain medications.

And god help you when you have to find a new doctor.

4) Despite trying different medications, diets, and lifestyle changes, you don’t know what you really have.

You can try to make it better, you do try to make it better, but how do you know what exactly is helping or hurting? Now, I know a diagnosis doesn’t guarantee a cure or that you’ll feel better, but at least you can follow a protocol, read books, talk to others with your exact condition. Being undiagnosed is blind. Treatment is blind as well. You’re just forced to live with it, deal with it.

5) Your condition gets worse because it wasn’t treated or managed in time.

Again, not to say a diagnosis means that your illness won’t progress, but it happens far more often than not with those who can’t find the help they need.

6) There’s no support group for you. No ribbon to wear.

And only a few organization help patients who are undiagnosed.

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Luckily, other chronic and invisible illness communities accept us with open arms.

Ghosts of the Undiagnosed.

Because at one point, they too were undiagnosed.


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What Can You Do?

  • If you’re undiagnosed:
    • Read, Read, Read. Do as much research as you can. Learn medical terminology and abbreviations. Read medical journals, case studies, or peer reviewed articles. Just avoid WebMD, Wikipedia, and the like when looking for information. There’s also a ton of great books on becoming your own patient advocate, how to navigate the healthcare system, and even some on being undiagnosed. Knowledge is power when it comes to actively protecting your health and care.
    • Be organized! Keep copies of everything, from every doctor. You never know who or what will be important at a later time.
    • Keep a symptom journal, document every pain and every symptom.
    • Take pictures of the visible symptoms, no matter how unimportant and unrelated it seems. It’s a way to document objective proof. And you can show it to your doctors as well.
    • Prepare for your appointments. Write down any questions, any medications, and any symptoms. Stories help to put your symptoms into context, helping your doctor to better understand how your symptoms affect your life, as well as possibly giving insight to what may be causing them.
    • Google Your Doctors. Read reviews, talk to other patients. If you feel like you’re having problems or not getting the proper care, it’s likely others are too. This will tell you whether you may just be sensitive about the issues or if you do need to look for other care. It may just be your condition is truly that rare or hard to diagnose, but it’s good to know if you are in good hands or not.
    • Sign up for clinical trials and research studies. Sometimes you can try new medications or have testing done for free. In clinical trials, they monitor you very closely and maybe it could lead to more answers or pieces to the puzzle. You just never know.
    • Tell your story. By sharing your experiences, you may find others going through the same or similar experiences. To know you’re not alone. It also helps you to get things your chest and helps others to understand.
    • Keep searching. Never give up. You deserve to feel better, to have answers. Even if your condition is rare, if you can get a diagnosis then you’re helping to advance the world of medicine, perhaps even helping others who are also searching for a diagnosis.
  • For everyone else:
    • Spread Awareness! Help us have a voice in the medical community. Help us to get better, join our search, support us.
    • Believe us, and believe in us. No matter the illness or condition, diagnosed or undiagnosed, we fight every day for some sense of normalcy and peace in our lives. We work so hard to continue to have hope and to stay positive. We are lonely, tired, scared, and in pain. However, nothing hurts us more than feeling like we have to prove how sick we are.

“So I Was Not Lost or Found…”


A Casual Update from Yours Truly

I know it’s been a while, but I’ve been barely keeping up with everything going on.

I honestly have not had the time to be sick…

And by not having time to be sick…

What I  really mean is…

I’m symptomatic, in pain, and have no choice but to ignore it.

I’m in survival mode now.

But I am truly grateful for being able to take breaks, read your stories,

and knowing I am not alone in my struggle.


Back to Work Update:

I’m lucky to be employed at one of the best companies in the country. And no, I’m not being sarcastic either. Literally, they make it in the top half of Fortune Magazine’s Top 100 Employers to Work For every year. That’s pretty impressive. They’ve also been doing their best to help me adjust back slowly to work, splitting my breaks into two to break up my day more, and allowing me extra time if I need it due to my symptoms. They also gave me two days to catch up on emails, changes in protocols (as we’re constantly updating or trying new things), and to get back into the swing of things. Today was my first day back on the phones. I have to admit that I am a little rusty, but it didn’t take me long to get back into the swing of things. After doing some training with a co-worker today, who’s been with the company longer than me, I realize I’m doing well, considering. My customer service skills are still in tact thankfully, and even on the worst of my calls today, I was able to turn it around. I even got a referral today, which has been my biggest struggle since starting with the company.

The hardest part about going back to work, even part-time, is still trying to balance my health and everything else in my life. Today I had a tough time remember things, especially particular words and phrases  needed to search for the guidelines that I NEEDED for a client. Luckily, a friend stopped by my desk to say HI at the perfect time, so she politely gave me a reminder. Two words. Simple. Common and everyday verbiage I use every single day and should be ingrained in my mind. But nope, it was gone. Just another side effect that continually gets worse. Also, sleep has been minimal to say the least, but that has mostly been a result of my symptoms. I’m trying to eat one meal a day to keep my energy levels up, which is a challenge considering how awful I feel every time I eat, and has made every night this week a sleepless one. I’ve been waiting to eat until dinner time, in hopes that it will not make the abdominal pain and nausea worse during working hours. I can’t miss any more days at this point.Due to my short-term disability being denied, it was required that I take a warning for my absence, although the leave was approved ahead of time (as no one expected me to get denied based on my symptoms and all the testing I was going through). I’m still working on the appeal and hopefully will recover the loss in income, as well as get the warning off of my record. So needless to say, there is a lot of pressure to get the appeal completed and as perfect as possible. Most people hire a lawyer to handle this type of claim appeal, but unfortunately that’s not an option for me at this time. It’s just a lot of stress and such a complicated process, but I am hoping I can have it done by the end of the weekend.

Other than that, I’m still trying struggling to make long-term decisions about my employment. Do I want to permanently go on part-time? I have until next Friday to decide. I’d have to commit to part-time for at least a year, and while most people would be grateful for a Monday-Friday schedule, the only hours offered are from 2-6 P.M. and with no other days off during the week, it makes testing and driving a couple of hours for certain Specialists impossible. My current schedule is 10 hour days, four days a week (when I’m not transitioning at work), but my schedule will change in July to 8 hour days, with Sunday and Wednesdays off. Luckily it’s an early shift, but will be rough trying to get everything done as well. And with my warning on file, I can’t miss any more days that aren’t scheduled and approved ahead of time. Now, I worry even more about the future and maintaining my job, especially not having an official diagnosis, and I don’t know what the best option is at this point. 3c8d93a6b8c281b8f411f6ba227f6a7bMaking plans about anything with a chronic illness is hard enough, but especially when it comes to your employment  and financial future – not being able to reach your goals and dreams, buying a house someday, not living paycheck to paycheck, saving the necessary emergency fund, or the uncertainty of not knowing what is wrong with you. What if there is no treatment? What if they never figure it out and it keeps getting worse? What will I do then? What if I do lose my amazing job? How will I survive? Who will hire me now that my symptoms have gotten worse with lack of treatment?  For me, this is the hardest and most frustrating part of being sick. I’m petrified of making a mistake or choosing the wrong path. I’ve exceedingly become more and more indecisive when making decisions and I hate it.

New Semester, New Class:

Luckily, statistics is finally over. I ended the class with a B, which killed me because I tried way to hard and put way too much time into this class. The average in the class was in the 50’s, which means the majority of the class failed. I was hoping he would curve grades, and my final GPA was 89.3%, so I had really had my hopes up for an A. Oh, well. It’s done and over, I never have to take it again. I’m in applied psychology this semester, which started the day after the last semester ended. The last class burned me out, so it’s hard to get motivated so quickly with no time to recover in between. But at least it is more interesting, although it involves reading two books, two writing assignments, and a quiz every week, not to mention a research paper, and a midterm & final exam throughout the course… All in 8 weeks. I’m tired just thinking about it. *sigh*

Endometrial Ablation Update:

So far, so good as far as I can tell. I haven’t noticed much of a change as of yet but I do know it takes time. The heavy bleeding has stopped, but I’m still having some sort of fluid leakage. From what I understand, this is normal and a sign of healing. If I do any type of heavy lifting, walking long distances, or just moving around too much, I still feel some strong cramping and pain in my abdomen. I don’t know how much of this is still from healing or is from other things going wrong with my body. My follow-up is the week after next and I’ll be grateful when I’ll be able to take a long, relaxing bath again. I am looking forward to being fully healed and seeing if there’s any noticeable improvement in the next few months.

What My Psychiatrist Said:

Went for another appointment with my therapist this week. I find it helpful to talk to someone who understands the healthcare system, in addition to psychology, to aid with navigating through this crazy time in my life. We’ve delved into more of how each week has been, how I’ve handled everything, and it gives me an outlet to discuss all the things I debate back and forth in my head as far as treatment, doctors, the future, etc. She doesn’t think I actually have a psychological disorder, at least this time around, just normal anxiety for the circumstances. I often wonder how much of my panic disorder years ago was actually due to the physiological changes that were occurring in my body that I didn’t realize or even recognize at the time.

We discussed some of the newer symptoms I’ve experienced lately and how frustrated I am that the majority of these newer symptoms, as well as some that have continued on for months now, have not even been documented in my health records (which I am sure also helped in getting my STD denied). Not to mention the lack of treatment or concern about them at all. She’s insisting that I get an MRI of my brain, which ironically I have been asking for repeatedly over the last couple of years, but have been told it is not a necessity. My therapist is now the fourth person in the medical field to advise me to have this test, although none of them have the capacity to order it themselves. She’s extremely worried about the lymph nodes  on the side of my head (not to far from the biggest patch of hair loss) that have continued to remain swollen and are still hard as a rock, in addition to the memory loss and word displacement. The new rashes and continued hair loss is inconvenient, of course, but not the most worrisome problem at this point. Mainly, her biggest red flag is the olfactory hallucinations that I’ve had for years, but are becoming more and more frequent the longer I go undiagnosed. So when I try out yet ANOTHER primary care physician next week, I need to see if she can refer me for an MRI. 

Dr. Appointments & Medical Testing:

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Many more test and consultations with new doctor’s coming up. Next week in particular already is making me tired and we’re not even there yet. (The combination of all those appointments, on top of work and school, is going to be brutal.) Here’s what I have scheduled so far:

  • May
    • 18th: Therapy
    • 20th: Testing in Denver.
      • Ultrasoundgallbladder. It showed distention at the end of 2013, but the HIDA scan showed 60% functioning. Testing noted as normal.
      • pH Impedance testing beings with tubing placement.
        • I’ll have a tube place thph_monitoringrough my nose and down into my stomach. It will measure the amount of acid that is present and I will have to wear the tube & monitoring box for 24 hours.
    • 21st: Testing in Denver
      • pH Impedance removal.
      • Gastric Emptying Study.
        • This test takes 4 hours. No joke. Where I will have to get down a bowl of oatmeal (luckily they aren’t making me do the egg beaters due to allergy), toast with jam, and some sort of liquid drink. We all know how eating/drinking studies go, but I am really interested in seeing what they find as it takes weeks for food to move through my system.
    • 22nd: Appointment with yet another primary care office.
      • Hopefully this goes better than the last few.
    • 27th: Follow-up on endometrial ablation.
    • 28th: Dentist Appointment
      • My teeth have recently started hurting more than usual, I’m losing color in a few of my teeth rapidly, and suddenly it feels like I have cavities on both sides of my mouth. 
  • June
    • 1st: Follow-up with Immunology
    • 11th: Vascular Surgery Consultation in Denver
      • for the Nutcracker Syndrome. Finally!
    • 18th: Follow-up with Gastroenterology
  • July
    • 8th: Cardiology Consultation in Denver
      • for the tachycardia and discuss P.O.T.S. testing.

So, that is all that is currently on the books for now. I know for a fact that Vascular Surgery will need additional medical testing. And if I can convince the primary doctor I am meeting next week to order an MRI, then I may be able to include neurology to my list.Not sure what the other doctors will have in store for me next either, but I guess only time and tests will tell.


And Finally: The Win of Week

Standing Up For Myself & Becoming My Own Advocate

I have never gone out of my way to write a bad review for ANYONE in my life. I don’t like making waves, especially when it comes from doctors. It’s not that I am necessarily intimidated but I know I NEED them now more than they need me, so I have kept my mouth shut. I see where this has gotten me with my current PCP and after waiting three weeks for Dr. B (mentioned in this post) to get back to me, with no response, I decided to leave them a review on Facebook. It actually did make me feel better to let them know how disappointed I was in my visit. 

Here’s what I wrote:

“I wanted to like this place, I really did. I stayed optimistic because it received good reviews. I’m dealing with a chronic illness and seeing a lot of specialist in Denver after years of my symptoms being blown off, so obviously having an organized primary care office is important.
While everyone in the office is pleasant and nice, it’s not running well. There was one person ahead of me in the lobby when I arrived. My apt was at 10:30, it was about noon when I got into the exam room. The sheet had not been changed on the bed and the room had not been cleaned up after last patient, which is gross. Nurse had trouble reading my blood pressure and took a long time to put in medications into the computer. Then another wait. The practitioner comes in, starts to review my history but seems overwhelmed and tells me she’ll have to copy it, read through, and call me in a week.
I had some abnormal testing that I needed a referral to vascular surgery for. Even had done the leg work and found someone in town who took my insurance and new patients.
No exam was done, but she listened to my heart and that was it.
They wanted all my records, which took about 20 minutes to scan in. I think I left the clinic at around 1:00 pm, so two and a half hours for nothing.
I waited the week, and called that Friday to check status. Left a message but no call back. Monday morning I left another message and when I didn’t hear by later in the afternoon, I called again. Spoke to the receptionist, said they’ve been working on it but just so busy and the practitioner week call me. Even at this point, I’m trying to be optimistic and give them the benefit of the doubt.
My appointment was April 23. So far, No call, no referral, and no different appointment set up as promised. I know doctor’s offices are busy, but really? This was a huge waste of time, which I guess when you’ve waiting five, almost six years for a diagnosis, what’s another month for a referral, then god knows how long to see the specialist.
Don’t go here if you have any chronic conditions or value your time. (Ask the guy who was screaming about the wait when I first arrived. I should have taken that as an omen.)
I tried to be patient, but I’m too sick to wait months, if they can even remember me by then. And forgetting to call after an already not so good first impression has me giving up on *Name of Clinic*.

Their response was:

“Thank you so very much for taking time to give us feedback. We sincerely appreciate it and would like to apologize for your bad experience as we experience growing pains. We are happy to report that since your visit, we have hired another Medical Assistant with a 3rd one starting next Monday! We have also hired a Patient Coordinator to handle referrals and another Nurse Practitioner who will start in 2 weeks. Patient care is our focus and while we love knowing when we get it right – we absolutely need to know when we don’t. Thank you again. Someone from our office will reach out to you today. Have a wonderful day!”

They did call today and I spoke with the office manager. She’s going to talk to the provider on Monday about doing what she had told me she was going to do. The records, as she was reading them to me, said they were waiting for my records (which I spent 20-30 minutes having scanned into their system – luckily she was there and remembered) and I was to schedule an appointment when I needed medications refilled (which was never discussed and why would I ask you for anything after this visit?). Oh, well. It felt good to get it out. I doubt I’ll continue any care there but I am interested to see if I get a call on Monday.


“You go ahead, push you luck
Find out how much love the world can hold
Once upon a time I had control
And reigned my soul in tight

Well the whole truth, it’s like the story of a wave unfurled
But I held the evil of the world, so I stopped the tide, froze it up from inside
And it felt like a winter machine that you go through and then
You catch your breath and winter starts again
And everyone else is spring bound

Then when I chose to live, there was no joy it’s just a line I crossed
I wasn’t worth the pain my death would cost, so I was not lost or found
And if I was to sleep, I knew my family had more truth to tell
And so I traveled down a whispering well to know myself through them”