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/

Reblog: Being Disabled Is a Job

When you have a chronic or rare illness,  your “job” title quickly changes over to “professional patient”. This article is poignant in pointing out the many deficits that modern society places on those with disabilities, while suggesting changes to the paradigms of both chronic illness and  those receiving disability benefits.

Source: Being Disabled Is a Job

And it’s a sad picture, the final blow hits you…

The chaos that surrounds a life with chronic illness never ceases to amaze me. Everything is always changing: day by day, hour by hour, minute by minute. It’s a constant game of rearranging. Not only your plans but everything you believe in  (or don’t believe in ) as well. You don’t ever dare to get comfortable because as soon as you accept one thing, even just a simple thing, something else is waiting just around the corner to shake things up once again. There really isn’t time for boredom like one might think when you’re living the sick life.

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“And it’s a sad picture, the final blow hits you
Somebody else gets what you wanted again and
You know it’s all the same, another time and place
Repeating history and you’re getting sick of it…”

I don’t know why I am continually shocked by the lack of competence at my current primary care office. You’d think I’d only be surprised when things are running smoothly considering all the problems I’ve experienced with this clinic. It’s been a gradual decline in patient care over the last year or so, although my last few visits did were a lot smoother than the ones prior. I had even decided to stop my search for a new primary care doctor because I really had hope that they were changing  for the better and that everything was starting to slowly improve. But as soon as I start to believe in my doctor again, my recent visit to the office only confirms that they really are a lost caused.  I swear, the clinic’s only ability is in ineptitude.

I was scheduled for bright and early last Monday morning. I woke up feeling awful and really didn’t feel like going, especially because I was going by myself and I had to drive there on my own since my husband had to work, all the while I could barely move or stand up due to pain.  But I knew I couldn’t miss it because it was my quarterly medication refill appointment to evaluate my current medication list. Plus, I had to schedule this appointment two months in advance and I can only imagine how far out it would be if I rescheduled.

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Luckily my PCP office is in town, so it’s not as bad as traveling for other appointments. I managed to struggle and get through the drive by myself, despite feeling nervous about it. I even arrived five minutes early, breathing a silent sigh of relief. However, as I get out of my car and start walking towards the building, a man cuts in front of me right as I’m about to get to the door. I am now forced to walk into the building right behind this man, who is not only coughing and gagging with every step he takes but is also not covering his mouth while doing so. “Inconsiderate a**h***. I know toddlers that display more manners than you…” I think to myself, but I didn’t bother to open my mouth. It’s not worth the trouble and it’ was way too early for that, even though I was feeling pretty cranky. Still,  I was honestly disgusted by the lack of courtesy this man extended to those around him. I just prayed that I wouldn’t catch whatever germs he was insistent on spreading.

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Finally, it’s my turn to check in. The receptionist looks frazzled already and they haven’t even been open a full hour yet. I almost feel bad for her… almost. She takes my co-pay and tells me to have a seat. I do, but far away on the other side of that inconsiderate cougher. I expected a long wait, given the number of patients in the waiting room but hoped they were all being seen at the urgent care side. This office can either be super quick and I’m in-and-out within 10 minutes or I’ll be there for 4 hours, there’s no in-between, so I’m usually prepared but I forgot my book this time at home. However, as I’m waiting, I’m just looking vaguely around the room until I realize that all I can see is actual filth pretty much everywhere. It’s not like I was looking hard or anything, it was just visibly THAT dirty – you couldn’t miss it.

  • There were used tissues crumpled up under the seats.
  • Spots, of what I could only assume were a variety of substances, left all over the tiles.
  • Dust and debris that had collected on both the end tables and magazine racks.
  • There were hand prints on most of the windows and the doors.
  • And a piece of gum was sticking out from the chair next to me.

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It’s obvious this place has not been cleaned or sanitized in a long time. I literally wanted to throw up, only imagining what else was there that I could not see. It sends shivers down my spine, even now.

Then, I watched as the receptionist completely ignored phone call after phone call as she was filing her nails. (Yes, that actually happened.) Her face showed annoyance every single time a new call would ring in. Um, hello? Isn’t that  your job? Again, just to reiterate, the clinic had only been open for about an hour at this point. I would have smacked myself in the head at this point, but I worried about touching my hands to my face given the state of my surroundings.

As my OCD started to take over and I began losing all of my cognitive ability to have any rational thoughts at this point (My mind was prompting me to either run widely out of the building or set the place on fire: “I’m sorry officer, it was for the safety of all humanity, I swear…”), the receptionist called me up to the front desk.

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She handed me a piece of paper and said, “they don’t need to see you today. Here’s your prescription.” Wait.. what? I am really confused. I need to actually see the doctor today. That’s why I’m here. But as I was gathering my thoughts, she must have noticed that either my head cock itself to one side or that I displayed a baffled expression across my face because she blatantly followed it up with, “your doctor isn’t here anymore, so another doctor is giving you this one-time script.”  I’m literally left speechless.

Hold up, wait just a minute.

Did you just say that my doctor is no longer here?

MY primary care doctor is gone?

Like gone, gone? Forever?

Where did she go?

Did she quit? Was she fired?

What happened?

What’s going to happen to my care? 

I have paperwork for my disability claims that need to be completed here soon.

I need a test that my GI doctor wants done to be ordered down here in town – I need a referral.

I also needed to adjust the levels of some of these medications today.

What am I supposed to do now?

I was in literal shock. After all of this, all we’ve been through… she’s just gone? I felt the panic slowly rising inside of me.  She then informs me that the manager will call me later on that day and they have no idea what they are going to be doing with all of my doctor’s patients. Before I can say a word, she yells for the next person to come to the front desk. I figured it was better to talk to the manager anyway, what is the receptionist with a bad attitude going to do for me anyways. I take my prescription and head home.

As soon as I was in my car and driving away, I was suddenly struck by feelings of anger and disappointment.

Why didn’t they call me BEFORE the appointment?

They just wasted my time.

Why did I have to wait so long?

Why did she even bother to check me in?

And they took my co-pay, for what?

I didn’t see a doctor.

Why couldn’t they schedule me another appointment with the other doctor until they figure this all out?

What a giant mess this is going to be!

Now I have to figure something else out and start the process all over again with a new doctor.

Perfect timing. Just my luck.

Well, at least I got my prescription for this month.

I decided to drop it off at the pharmacy to get filled on my way home. At least then something would get accomplished that day. When I handed it to the pharmacy tech, who knows me all too well at this point, he looked confused as he’s entered it into the computer. He then stepped away for a minute to chat with the main pharmacist working that day. As he walked back over, he handed me the paper with my prescription on it because they can’t legally take it as written. Are you kidding me? Evidently the name of the doctor who signed it and the DEA number did not match. I asked if they could call the doctor to verify it but because of the type of medication that  it was for I had  to have a new one written up – correctly. *sigh* I walked back to my car and called over to the clinic, in hopes that they can have it prepared by the time I drive back over there for a new one. After multiple rings, someone finally answered. I explained the situation and she tells me she needs to connect me to someone else. The phone then only rang a single time before going to some random voicemail message. I hang up.

My blood was boiling the entire drive back there, thinking all the things I was going to say to these people. I angrily pulled into the parking lot, slammed my car door, and stomped into the waiting room. However, before I even approached the front desk I heard a woman screaming from the top of her lungs. No sooner did I round the corner that I saw the woman who was yelling and that it was directed toward the receptionist from earlier. There were at least 4 or 5 patients behind the woman, all angrily cursing at the receptionist as well. It was like a mob scene in there and I half expected for a full-out riot to break out, but it never did. I patiently waited as everyone finished  venting their frustrations at (not to) the receptionist before they each walked away one-by-one. At least I’m not the only one who got screwed here. Just imagine how many people this situation actually affects. They shouldn’t treat their patients this way! At this time, however, someone else walks up to front desk to give the first receptionist a break (probably well needed, I’m sure). I, again, politely tell her what’s going on and she said she’d be right back.

While waiting, I decide to let the whole thing, including my own built up anger, just go. What can I do about it anyways? When she returned, she handed me a corrected script. I told her to “have a nice day” (although I knew that she probably wouldn’t. Not the way that day started anyway). Once again, I pull away… only this time I knew in my heart it would be my last.

“Because these things will change
Can you feel it now?
These walls that they put up to hold us back will fall down
It’s a revolution, the time will come
For us to finally win
And we’ll sing hallelujah, we’ll sing hallelujah”

The manager never did call about rescheduling my appointment as promised. I did my due diligence by following up with a call to the clinic on Monday and asked reschedule, but I was told that they won’t be taking any of my old doctor’s patient’s at this time. I did ask to see the other doctor, telling her about the paperwork and medication refills I would be needing very soon. She said she would leave a message with the old doctor’s nurses to see what they could do. One of the nurses did call me today, telling me my prescription was ready for pick up. I politely let her know that I had already received that one but was trying to schedule an appointment for next month. She told me they have no doctor to schedule me with, they are all gone, just the director who is filling in for the time being until new doctors are hired. She also said I can call when I need them and they’ll see who is there at that time. I thank her, but only because she was the only one who ever knew what was going on half of the time, and hang up the phone. I should have left this practice months ago anyway. Perhaps this whole situation is truly a blessing in disguise.

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Thankfully I had scheduled myself with a completely different clinic shortly after I got home that day. It was for three weeks out, earliest they could get me in, but they sounded a lot more organized (at least over the phone). Although this is probably the worst timing given all that’s currently going on with further testing and new specialty visits, not to mention work and disability, I still feel that this is probably for the best overall. For not only my personal health and safety but both my mental and emotional status as well. It’s a shame that what was once such a great clinic (with an amazing doctor who listened and believed in me) turned into such a dysfunctional mess. I still don’t know if my doctor quit or got fired (or who knows what else) since no one is talking, but I wouldn’t blame her for leaving either way.

Ultimately, life continues to move forward regardless of any setbacks. I now have some diagnoses. Treatment (even if it is mild) has been initiated. My doctor’s finally believe in me now. And there’s finally hope for the future once again.

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Lyrics quoted: “Changes” by Tayor Swift

The Infinity Dreams Award

Humbled and blessed by another award. I’m still in awe every day of the individuals who read and offer support through my blog, let alone being nominated for these awards. A huge thank you to Emily from Fearfully Wonderfully Me for nominating me to receive The Infinity Dreams Award. Emily is always so encouraging and thoughtful in her words. Definitely check out her blog,  Fearfully Wonderfully Me , as she eloquently writes about her faith has influenced both her life and her chronic condition. Her blog is truly fabulous because of the eclectic nature included in her blog, such as fashion, cooking, inspiration, and relationships. Thanks again, Emily!

Okay, so here are the rules for the award:

  • Thank and link to the blogger who tagged you
  • Answer the 11 questions
  • Nominate 11 bloggers and ask them 11 questions

My Answers to Emily’s Questions:

(In pictures, because I like pictures)

1. Would you rather be a ninja, fairy, or mermaid?

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2. What is the last thing you ate?

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3. Cats or dogs (or both)?

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4. Do you wear glasses/contacts?

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5. Star Wars or The Hunger Games?

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6. If you could eat only one thing for the rest of your life, what would it be?

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7. What’s the best birthday present you’ve ever gotten?

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8. What’s your least favorite color?

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9. What’s your favorite book?

PostSecret

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10. Do you like roller coasters?

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11. What is the most fun thing you’ve done this summer?

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And my nominees are:

Here are your questions:

(and no, they don’t have to be done with pictures)

1. If you could live anywhere in the world, where would it be?

2. What is your favorite quote?

3. As a child, what did you want to be when you grew up?

4. Are you a morning person or night person?

5. What is your favorite childhood memory?

6. Which store could you max out your credit card with?

7. Ever meet anyone famous before?

8. Is the cup half empty or half full?

9. What’s your biggest pet peeve?

10. What cause would you like to bring the most awareness to?

11. Any exciting new and exciting news you’d like to share?

Thanks for reading! Please feel free to comment and share.

Unbound the Wild Ride

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This ride that takes me through life
Leads me into darkness but emerges into light
No one can ever slow me down
I’ll stay unbound”

Despite having a rough start this morning, I did wake up feeling a lot less emotional about the future prospects of my healthcare. I knew these feelings wouldn’t last too long, they never do, but I am glad the darkness has finally passed. After I woke up super early to take the foster dog to the vet clinic to get neutered today (which was cancelled, as he is still too skinny to go under anesthesia), I came home, finished an assignment for school, and then spent the good majority of the day napping. I think I just needed to catch up on some rest to find myself again. I often tend to keep pushing and pushing myself until I finally break down, both physically and emotionally. 

“Sometimes when we’re young, and always on the run
It gets so dark and I know that place yeah
So don’t be too concerned, you’ve got a lot to learn
Well so do I and we’ve got plenty of time yeah
Don’t fall off the track yet with so many races to go
Hold on”

After my much-needed slumber, I went to a follow-up  appointment with my primary care doctor. I brought all the updated, abnormal test records from the last month or so. She seemed quite elated that the specialists were finally getting close to a diagnosis and that there is finally some answers. She believes there is a hidden autoimmune issue going on, perhaps still Lupus, but I may just be lucky enough to be seronegative autoimmune (where I do have autoimmune disease, but it won’t ever clearly show in my blood work).  I asked her about a referral to another vascular surgeon for a second opinion. She said she didn’t think it was necessary, as the cardiologist seems to have everything under control and could do possibly do the surgery himself, as many vascular surgeons and cardiologists work either closely together or doctor may be trained in both areas. At first I was confused about this statement and got kind of frustrated, thinking to myself, really? She won’t give me a referral? But I guess it makes sense. I told her what the vascular surgeon originally had said, about how these conditions don’t really exist and that if they did actually exist, there was no way I could have all of them (despite the CTA results). She looked at the report and says it clearly shows I have them, and that sometimes specialists often don’t have the best ‘bedside manner’. Her theory is that he is set in his ways and is probably a great surgeon “for horses” but not for “zebras”.

She did tell me, that doctors often forget that we don’t know what happens “behind the scenes” in cases that are as rare as mine. Typically, the doctors up at the specialty hospital are more than likely doing research and setting up my move over to the dysautonomia clinic in Denver. She says there, I will see even more specialized-specialists (I assume like an electrocardiologist, etc.) and she wants me to hang tight for now and be patient (easier said than done), that they will probably have a vascular surgeon on hand (or fly one in) who is more knowledgeable on these types of conditions. Many times, she said, while I am supposedly just waiting for the last of the test to “rule out the final things”, the doctors are preparing and researching the next steps in creating a plan of action for when I transition to the “next level” (a new, more specialized clinic). I hope she is right. Maybe I worked myself up for nothing, but this wasn’t the first time I’ve experienced this situation with doctors over the years.  I’m trying to not get my hopes up again, but maybe she knows more than she is telling me. I guess I’ll do my best to hang in there until I follow-up with the cardiologist in a few weeks. 

“Some live so wrong, with what we do is each his own
But living in fear, endless shame for countless years
I never lived in fear I knew I’d die another day
I never viewed my life as something… slipping away”

Tomorrow I go back to the specialty hospital for a hydrogen-methane breath test to see if I have SIBO (small intestine bacterial overgrowth) or food intolerances. I’m not hopeful on this test, but again, it’s one of the final GI tests left to do.

You can read about this testing here.

The hardest part is always the waiting. I need to try and remember to live the best I can in the meantime, no matter how frustrated or tired I get with the process. Just sometimes, I feel my life is just passing me on by and I get scared that it will be too late before I reach the end of this road or that I will never ever truly live again. That’s a terrifying thought for me because there is so much still that I want and need to do in this life. But for now, I wait.

Unbound the Wild Ride

“There’s nothing here to take for granted
with each breath that we take
the hands of time strip youth from our bodies
And we fade
memories remain
as time goes on…”


Lyrics: Unbound the Wild Ride by Avenged Sevenfold