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/

Somewhere you’re not coming back…


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The highs and lows of chronic illness are overwhelming. One minute I am strong and powerful, feeling like I can take on the world. The next, I feel like my world is falling apart all around me. Hour by hour and even day by day, life changes so drastically: I’m tired, I feel good enough, I am violently sick… I’m happy to be alive, I’m sad to live this life, or I’m numb to my feelings. I realized, after the emotional train-wreck that was my day was today, that being sick reminds me of how life was shortly after my mother died… I am stuck and lost within the five stages of grief…


The Five Stages of Grief in Chronic Illness:

1. Denial 

“It’ just a cold, it’s nothing.”

“There’s nothing wrong with me.”

“The doctor’s have no idea what they’re talking about.”

“I’m fine, everything is fine.”

“This can’t be happening to me.”

“It’s not getting worse, I promise.”

2. Anger

“Why me?”

“Life isn’t fair!”

“I hate this!”

“I’m sick and tired of being sick and tired.”

“I don’t want to do this anymore.” 

3. Bargaining

“Maybe if I do better…”

“God, if you make this go away I promise to…”

“If I keep doing good things, maybe my luck will turn around.”

“I promise I’ll try harder…”

“If only I had kept searching for answers…”

“Maybe I can talk to my doctor…”

4. Depression

“What am I going to do with my life?”

“What’s the point?”

“Life isn’t worth living anymore.”

“How am I going to afford to live? Or my medical bills?”

“I can’t do this anymore.”

5. Acceptance

“I can choose to give up or I can choose to fight.”

“My illness doesn’t define me.”

“I choose to keep going, despite my illness.”

“I have a greater purpose.”

“I will raise awareness to my disease.”

And today I felt all of these.

“I can’t believe this happening, not again…”

“I hate being sick. I hate this life. I hate not having answers. I hate the unknown.

I hate, I hate, I hate…”

“I need to talk to the doctor, it’s the only way…”

“I can’t do this anymore…”

“I have no choice BUT to keep moving forward.”

I Will Stay Positive…Maybe.

I grieve for what I have lost due to my illness. And what I won’t have in the future, either.

But mostly, I grieve for the loss of myself.

For all that I was and could have been.

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What My Chronic Illness Has Robbed Me Of:

  • My Dreams:
    • I wanted to do so much with my life. I was set to have a bright future.With all I manage regarding my health, I can only imagine the amazing things I could have accomplished by now. Imagine if I put all my energy into bettering my life, where I’d be?e3feea180cd8f191cdb9030765e8e9bd
    • Instead, I balance:
      •  Doctor’s appointments and medical testing, sometimes every day of the week and multiple appointments in the same day.
      • My Symptoms.
      • Medications.
      • Medical Records.
      • Scheduling and coordination of care.
  • There’s no big house with a white picket fence in my near future. Maybe not ever. Chronic illness is too unpredictable for such a big commitment.
  • Traveling the world.
  • My Career:
    • I’ve always worked hard, been an “above expectations” employee… continuing to learn, grow, and advance in every job, even when I started getting sick. But then it got worse…
    • I’ve had to change my career goals so many times, I feel like I am back in school… What do you want to be when you grow up? I Don’t Know!” ea7374914206b8416b76baac92fa71a2
      • Marine Biology?
        • nope
      • Real Estate?
        • nope
      • Veterinary Medicine?
        • nope
      • Management/Leadership
        • nope
      • Insurance
        • Health? -nope
        • Property & Casualty? -not sure anymore?
    • What’s next?
      • Veterinary Forensics?
      • Forensic Psychology?
      • Health Psychology?
    • My current job seems like they’re finally fed up with me. I can’t do disability because I can’t PROVE how sick I am.
  • My Ability To Do The Things I Love:
    • I had to quit competitive swimming.
      • and competitive cheerleading.
      • and roller derby.
      • and dance.
      • and surfing (when I was in FL).
    • I can no longer go on hikes or go camping.
    • Go to concerts and shows.
    • Set design/horror make-up/act in haunted houses and productions.
    • Go on long drives, exploring new places.
    • Traveling.
    • Volunteer with animal rescue groups.
    • Ghost hunting (don’t judge me…)

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  • My Appearance:
    • My hair keeps falling out.
    • I’m not “toned” because I can’t exercise like I used to.
    • Despite that I hardly eat, I often gain weight quickly. Then I lose it. Then I have stretch marks from the constant changing in my body.
    • My body is plagued with rashes and sores.
    • I can’t wear makeup most days because of how sensitive my skin has become.
    • I’ve lost pigment on my back, which is now also starting to happen on my chest, stomach, and arms.
    • I have giant, dark bags under my eyes… always….
    • Mostly, my confidence. And my smile.
Nevus Anemicus

Nevus Anemicus

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New rash after sun exposure

New rash after sun exposure

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Alopecia Areata

Alopecia Areata

Loss of Pigmentation on neck

Loss of Pigmentation on neck

My Relationships with Others:

  • My husband.
  • My family members.
  • My friends.
  • Some days, I feel like I can’t even relate to most people anymore.
    • I feel awkward and different.
    • I feel jealousy.
    • I feel disappointment. 

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  • My Faith:
    • in the health care system.
    • in people.
    • in medicine.
    • in myself.
    • in God.

I grieve often for all the loss in myself.

For what once was or could be.

It’s too easy to remember all the things that are gone.

That illness has taken away from us.

I wish I had appreciated and loved myself more.

That I had done more, lived more.

So many regrets….

But…

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What My Chronic Illness Has Given Me:

  • Strength and the ability to keep going, no matter how frustrated I get.
  • A great deal of medical knowledge I would have never gotten otherwise.
  • The ability to understand what it’s like to hurt, whether mentally, physically, or emotionally.
  • To feel and understand the struggle of others. AND the WANT to know other people’s struggles.
  • To draw awareness to the undiagnosed, the chronically ill, the invisible…
  • A drive to never stop searching for answers. In every area of my life.
  • Patience. Maybe not so much in wanting a diagnosis, but in everyday life. Like doctors offices.
  • Appreciation of those who stuck around and took the time to understand what it’s like to be sick.
  • The understanding that I can’t control everything, including my own life.
  • That knowledge that change, no matter how hard, can lead to good things.
  •  Love by so many people.
  • Friendship and understanding from other’s also going through a similar journey.
  • The ability to cry, smile, scream, laugh, and sigh… all within one conversation. Or blog post.

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But the biggest thing I learned is that there are so many ups and downs in chronic illness.

And if I hate how things are today, tomorrow is always a new day.

My future is not set in stone, and although I can’t make plans, 

I still have the option to live this life how I choose.

Hopefully find a diagnosis.

And make a difference in this life.

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Tonight I cry, but maybe there will be peace tomorrow.

Say What You Wanna Say and Let The Words Fall Out


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Life is funny sometimes. I can’t apologize for my last post, because it was what I was feeling at the time, but it is slightly ironic that it came just after receiving an award for being an inspiration. Unfortunately, living with a chronic illness, especially without a diagnosis, is a constant roller coaster of emotions. One day you feel like you have everything all under control – your life, while maybe not going exactly as planned, has a purpose and you are stronger for overcoming more than you ever thought you could do. And then out of nowhere, you’re handed a reminder of how human you really are. And it’s okay to be human, in fact, it’s exactly what you are supposed to be.

A1

I often struggle with who I am and what is expected of me ever since I became sick. I’m constantly feeling guilty for not be able to do this or that, or letting this person down…. again…. It really makes it hard to maintain stable confidence in yourself when you are constantly showing pieces of yourself to different people. It feels very fake and rehearsed. Who I am and what I show depends on who I am around and what situation I am in. For example, if I am in public of any kind, no matter how much pain I am in or how much anxiety I have, I will play it off like nothing hurts and put a smile on my face. At work, although they know I am dealing with medical issues, I will put effort into looking nice, a smile on my face, and be cheerful and helpful no matter what I am experiencing on the inside. I even did this at doctor’s offices at first. I got so tired of doctor’s telling me it was anxiety or depression, when I knew it wasn’t, that I played off my symptoms at times or only gave them a very limited version of how it was affecting my life.My husband, at one visit with my doctor, pointed out that I could be crying hysterically in pain or dry heaving in the car on the way to the clinic,  but then be as normal as can be while I sat in the waiting room or on the exam table, only to return to “myself” when we returned to the car. 

A2

It’s not that I am trying to hide who I am or that I want to be a fake person, but often there’s consequences of showing your true self. All of us with a chronic illness have done this – probably more than we’d like to admit. How many times have you answered the question, “How are you doing?” or “How are you feeling?”. We all know no one expects to hear:

“Oh god I am still doing awful. I was up all night AGAIN in the bathroom, I wasn’t able to get any sleep. The rashes all over my body are getting worse. My lymph nodes are swollen and I feel like I am going to DIE, like literally. I worry about dying all the time. I’m bleeding from every orifice this week. What a flair I am having! I had to miss work again, I’m probably going to get fired. Then I’ll be homeless shortly after. Life is just not fair…. Nope, they haven’t found anything yet. I have no hope I’ll ever get a diagnosis anyways. I keep getting told it’s in my head so often that I do think I am crazy sometimes. And some days I think there’s nothing to work and live for, but I don’t want to kill myself either. C’est La Vie”.

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Instead, we just say “I’m fine” or “Good” “Oh yeah, still working with my doctor’s and going through medical tests. I know they’re real close to finding a diagnosis. I am so lucky”.

Most people won’t understand and some may not care if we told them how we truly feel. I’ve learned to be a great actress in my illness. I can be who ever YOU need me to be or however YOU need me to act. It’s just easier for both of us.  

Ultimately, it’s my way of self-protection; building a wall around this part of me that I am embarrassed of. I want you to see the strong girl who handles so much and works so hard, who is inspirational and motivates others. I want to be a cheerleader, a hero, the brave one… I want other’s to look up to me and like me for me. The girl who is an UNDIAGNOSED WARRIOR. I am those things, too. I’m also many things to many people:

  • a wife0000002
  • a puppy and bunny mommy
  • a sister
  • an aunt
  • a daughter
  • a family member
  • a friend 
  • an associate
  • an employee
  • a student
  • a patient

As I have gotten older, I realize it’s alright to be each one of these things. It’s truly not being fake or a coward. Because you some part of you IS that person. And maybe it’s not everyday that you have the strength to put on your makeup, and you’re angry or emotional because you have dealt with so much this week. That’s OK too. Feeling guilt is a useless emotion,  but sometimes it feels so good to just cry so  damn hard that it hurts. Or be so angry that you just need to SCREAM OUT AT THE TOP OF YOUR LUNGS! It’s healthy.

My therapist told me once that I shouldn’t feel bad about myself when I feel frustrated or when the anger builds up – she says that is WHAT KEEPS ME GOING AND FIGHTING. And I think she is right. It may not be pleasant. In fact, it might seem ridiculous at times, especially when you’re set off over something seemingly so small and stupid, but really is just a reaction to all the things you have slowly built up inside of you. How else can you continue on a journey like this, when you are constantly beat down over and over by your symptoms or by other people? It’s easy to give up, to lay down and hang the white flag. But it’s THESE MOMENTS, as crappy and unfair as they are, that really make you push harder and want to FIGHT as hard as you can to PROVE EVERYONE WRONG. And someday you WILL!

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You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up
Nothing’s gonna hurt you the way that words do
And they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

Everybody’s been there, everybody’s been stared down
By the enemy
Fallen for the fear and done some disappearing
Bow down to the mighty
Don’t run, stop holding your tongue
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

Innocence, your history of silence
Won’t do you any good
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

Read more: Sara Bareilles – Brave Lyrics | MetroLyrics

Pick it up, Pick it all up, Start all over again…



It finally happened. I didn’t mean to let it out, I just finally broke. I’m not proud of my behavior by any means, but there just comes a point when life beats you down over and over, with big things and little things, until it take one thing to just make everything you’ve worked so hard for to feel like it’s all tumbling down around you. 

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It started with hardly any sleep this week. I was behind in school and trying to catch up before midterms next week. I stayed up too late, too many nights in a row. Still trying to get back into work is exhausting all on its own. I worked on Monday and Tuesday, then therapy on Tuesday, testing at the hospital Wednesday and Thursday, meeting with my lawyer on my appeal Thursday as well (which I attempted to finish on Sunday, but finally gave in when 8 hours later I was in tears and nowhere close to being done), and back to work today, starting the cycle all over again. So much to do, still no time, and still feeling so awful. 

Testing was stressful and uncomfortable, and yet again, I don’t think my tests will show anything, but I can’t confirm that for sure until the doctor reviews all the imaging. Woke up again this morning with a radiation burn across my nose and cheeks. For some reason, after the last four or five tests that involved radiation or nuclear medicine, I wake up the following day with this “rash”. It burns so bad. I can’t put lotion on it, or it becomes greasy and bubbles up some. So I couldn’t wear any makeup to work or to the doctor today. I looked awful, hell I felt awful. But I had to go and do everything I had planned. Second day in a row that someone commented on how awful, sick, and tired I look. Thank you, I’m well aware of how crappy I look today. This is how I feel everyday, I just do my best to hide it to make YOU more comfortable. 

After work, rushed down to try yet another Primary Care Doctor. And yet again, disappointment. The nurse was awful, and while not outright mean or anything, she was not very bright. Couldn’t spell my meds, but again refused to read off my medication and history list. And when she couldn’t find it in the computer system, she admittedly said she wasn’t going to input it to my record. Um, ok. Then the doctor comes in. She doesn’t listen to a word I say, dismisses all my concerns, I have to constantly repeat myself about what doctors and treatment I am currently receiving. I tell her I just want a doctor who can continue my care after my specialists make recommendations or find something with my testing. She looks through a couple pages of my records, tells me it could be depression on multiple occasions. She also tells me I have orthostatic hypertension (which I KNOW, but no doctor will note it), but then proceeds to say that all I need to feel better is to drink more water. The cause of me being sick is that in dehydrated, which is not true at all. All i can do is drink. Also, she has no idea why I would get radiation burns after testing. My lymph nodes are very swollen, but she has no idea why, but she’s certain it can’t possibly be cancer. She wants to run more general blood work, I hand recent copies. So she only wants to run a thyroid check, which they checked at least 15 times in the last five years and all have been normal. My husband came with me, he’s not happy either. She says I should go to a GI doctor… again, I explain I’m currently seeing a GI specialist. She wants me to tell them to run this test or that test. Already had them. She doesn’t listen. She wants to know what my diagnosis is then. I don’t have one, I’m still testing, blah blah blah. She says to schedule in a month or two after I see my GI doc, recommends therapy again, and to come back when I can to run my thyroid test real quick, no appointment necessary. No thanks, I’ll pass. I’ll save you the trouble, it’s normal. She wonder’s why I’m not “skinny” from not eating… Well obviously if I knew, it may explain some of my symptoms, don’t ya think? I’ll just drink more water and take anti-depressants I guess, and then I won’t need you lady. Isn’t that what you said?

So back to square one, AGAIN. I’m frustrated, but this feeling has become oh so normal at this point. I contemplate giving it all up. Whats the point? Even if the specialists find something, I have no one to complete my care as a primary. I go upstairs to study. Hours later and I’m still not done reading the last half of this chapter. The dogs keep barking, because my roommate and husband keep coming in and out, and then their friend’s show up. The house is a mess because I haven’t had time to clean, laundry’s not put away… it’s all building inside, I can feel it. I’ve been feeling it slowly coming up for months now. One by one. Day by day. I lose feeling in my hands, which also has not been addressed or noted in my records. My hand is currently purple from the livedo reticularis. I drop my coffee, all over my brand new textbook, which I need to study from and cost over a hundred dollars as I bought it brand new. It’s all over my notes I just spent hours and weeks working on, and it’s splashed on to my computer, which luckily wasn’t worse. I’m not proud of this, but dropping my coffee was the straw that officially broke the camels back. 

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I work so hard each and every day to maintain normalcy, all while spending all my days off in the hospital or doctor’s office. I sacrifice sleep and rest to barely keep up in school and work. Everything else is left in the wind because I can’t possibly do another thing. I am in pain. I can’t eat. My joints hurt. I lose feeling. I faint. I smell things that aren’t there. My lymph nodes are so swollen they hurt to lay my head down. My hair keeps falling out. My stomach hurts. I always fighting the urge to vomit. My body is sore and tired. I feel like I am going to die. And if no one will help me, then I am pretty sure I will. I’ve never been depressed, I’ve always tried keep going. 

But after all this today, and ruining my book and my notes, I screamed. And then I cried. Hard. So hard, in fact, that I couldn’t breath and hyperventilated. And I threw my book. I just sobbed and sobbed, until I couldn’t stand any longer. Then I cried on the floor. Everyone in the house comes upstairs to see what happened, I probably sounded like I was dying. And here I am crying and yelling on the floor, not my proudest moment. But I felt everything tumbling down, everything I kill myself for each day falling apart. I feel like a failure. I feel like there’s nothing to keep me going anymore. I don’t want to keep pushing. I don’t want this life. It’s not making me stronger. Today it make me feel the lowest I have ever felt. It made me want to quit life. I can’t remember the last time I smiled and it wasn’t fake. I can’t remember a time my mind was at peace, and I wasn’t scared, or worried, or anxious, or sick, or tired. My friend cleaned up my books for me, let me yell and scream and get it all out. Everyone is always telling me to stay positive, don’t be so negative, don’t this, don’t that…. or do this, do that. I’m so alone in this journey in my day to day life. I have tons of people who support my journey, but no one who feels it day to day. Even the ones who do see me everyday don’t truly GET it. And it’s not their fault. It’s not that I want them to feel the pain I feel. It’s just lonely. 

When is it time to give up on searching for a diagnosis?

Maybe I am just crazy?

Maybe it’s not worth it?

But I can’t live like this either!

I’m tired of no one believing me, or ignoring me.

I do one good act every day, trying to get good karma.

Just so maybe someday I’ll have a good day. Or good Luck.

It never works. It’s not fair. 

I pray one good day. One day of relief. Or death.

I can’t be this sad, pathetic, sick.

I can’t keep trying to be a superhero, hiding my weakness.

I don’t want to fail at this life. I can’t afford to fail.

No one wants to hear about this side. It’s not inspirational, and I apologize.

I want to be that girl, maybe I will be soon again.

But tonight, I’m broken.

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