Book Review on All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride

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My high school graduation gift – the original Walden Wahine Blue Funboard. Photo by Undiagnosed Warrior (2002).

As any avid reader will tell you, it’s really quite rare for a book to find you rather than the other way around. But that is exactly what happened with Jaimal Yogis’ third book entitled All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride. More times than not, the reader selects their next material based on their individual interests or as a way to fulfill an empty segment of the self in some manner. For some people, books bring with them all the adventure that may be missing from one’s life; other stories may appeal to more intrinsic motivations of the reader, perhaps offering the integral preservation of the self as if the words and the wisdom divulged in the ink shares the hidden secret of the world, the true meaning of life, or what you need to do to be happy. My go-to reading material, on the other hand, would put most people to sleep: college textbooks, medical journals, research studies, psychological theories, and self-help books about coping with chronic illness. Although my personal interests were much more diverse before I became really ill, both science and research were pretty much the only running theme for which I came to understand the social environment. I am far too analytical to find truth any other way. I should also preface that I’ve never made a commitment to one religion or belief system over another yet have always considered myself highly spiritual according to my own definition of the word. This was the only way that I could reasonably explain my natural attraction to the ocean or the way that large open bodies of water always made me feel at home, particularly in providing much-needed peace within the surrounding chaos of the outside world. All I’ve wished for lately, though, is some semblance of calm within this storm so that I could securely ground myself once again.

“Psychologists say blending into our surroundings is a feature of having thin boundaries versus thick ones. In decades of studies, thick-boundaried people see themselves as part of firm groups (“we do this; they do that”). They see the world as separated into good and evil. They don’t recall dreams well or feel unified with the diversity of the world. Thin-boundaried people remember many, often wild dreams. The border between self and other fall away from time to time. It’s easier for them to feel empathy, but the thin-boundaried sometimes struggle to say focused” (Yogis, 2017, p. XVII-XVIII).

This book review is long overdue as a result of the endless disarray that has taken over my life as of late. In addition to my health declining and my symptoms worsening, my ability to read and write is becoming progressively compromised as I can’t seem to concentrate long enough to put words together that make sense without significant effort and medication anymore. It’s also been challenging to manage my symptoms after recently losing multiple doctors and, therefore, having to find new providers willing to take over where the other doctors left off. Not to mention the fact that I’ve been trying to get through the final semesters of college by taking courses that unnecessarily require at least three or more different writing assignments per week. Thankfully, I only have 2 more classes left until graduation. It’s just been extremely hard to manage anything more beyond medical appointments and academics, so I apologize for the long pause in between updates. Perhaps this is one of the many reasons reading All Our Waves Are Water happened at just the right moment because, if we’re being honest here, it’s been getting harder and harder to stay positive about the future when you’re constantly dealing with one setback after the next. I mean, how are you supposed to maintain hopeful about the future when all you have to compare to is the mundane life you’ve felt stuck in for years? It doesn’t help any that I’ve been overly consumed with thoughts of permanent and total disability with the latest developments in my quest for a diagnosis – the final answers still remaining. Regardless, questions arising about the future continue to be difficult to answer with any definitely, but isn’t that case for all of life’s greatest questions regarding one’s spiritual path and purpose? At least that’s what the author of this book set out to answer in sharing his anecdotes about adversity, whether in love, in travel, in surfing, and eventually in reaching spiritual enlightenment – but perhaps not in the way that you’d expect from a spiritual novel on surfing.

“…the tube was the perfect metaphor…The definition of a wave is a “disturbance moving through a medium,” and the memory of wind is spiraling through the medium of ocean. Atoms, molecules, cells, are bouncing air’s message in an endless domino effect – a game of telephone. Each swell is a sort of ghost, an illusion that only looks like a firm set of matter in motion. And people are too. We look firm with our cookie-cutter parameters: head, shoulders, knees and toes. But the bits of matter that compose our bodies are constantly getting traded out by new water, new food, new air, new chemicals. There is no static amount of stuff that stays with us from birth to death…” (Yogis, 2017, p. 76-77).

The first thing you’ll notice when initially thumbing through the pages of All Our Waves Are Water is the fact that some chapters of the book are cut perfectly straight and narrow, while the edges found in other chapters are clearly jagged and mismatched by comparison.

This distinction in the boundaries physically represents one of many stunning metaphors found within the broader context of the book, whereas the true meaning and eloquence of these metaphors are better illustrated in the author’s tales of surf trips in exotic locations, recollection of events while in the pursuit of a graduate degree in journalism, struggling with the acceptance of adulthood at the start of a professional career, and stories of lost relationships that led to newly found friendships that ultimately composites Yogis’ mystical journey towards spiritual enlightenment. However, a lot of what is written in All Our Waves Are Water is not what you would normally expect from a traditional surfing book, though the ocean and surfing act as the underlying metaphor equating to spiritual and emotional transcendence into adulthood. Surfing and spirituality also participate in the author’s memoirs as both the antecedents and moderating variables that distinguishes life’s successes from perceived failures, acceptance from frustration, or happiness from sadness if you will. Nevertheless, Yogis does a great job at blending spirituality and surfing into the storyline as his inner voice speaks to readers using the same dialogue that we all use to converse with our friends about our experiences, while combining the positive and negative self-talk into the dialogue as either a question or guide for achieving one’s greatest path in the journey.

“This time around, for whatever reason, I had to keep close to the sharp earth and human chaos. This wasn’t the happy path or the sad path, the perfect path or the imperfect path, the caged path or the free path. It was just my path. I had to look into my heart and trust it because nobody knew it, and nobody could walk it, but me” (Yogis, 2017, p. 186).

Aside from the apparent wisdom that comes along with any spiritual growth and development, the author’s internal conflict over settling into adulthood or fleeing from the modern world also brings with it an experience that nearly all readers can relate to in learning how to adjust one’s expectations for the future to fit within the reality of personal circumstances. This, more than anything, resonated with me on a deeper level than any of the lessons found amid the author’s chronicle of events because I honestly have no idea what I am going to do with my life after I graduate from school, especially as I watch every opportunity for recovery slipping away as one treatment fails me after the next. I know we all question the future to a degree, but it’s even more so when you have a chronic illness because it’s next to impossible to plan a future when you can barely commit to plans you made for later that same day. I’d take physical pain over the unknown time and time again; life’s a lot less stressful that way.

“We all know that we could go any day: a car accident, a brain aneurysm, a heart attack, a bullet. Rich and poor, black and white, gay and straight, nothing protects us. We know this, and yet we don’t know it. We move through life as if we have forever, as if we can take a stroll around the block, the cappuccino made unusually well, the Tuesday fusilli, for granted. We live as if there will always be a million more like this. So we filter out the details. We go on stressing about accumulating achievements the big impressive things. But the big impressive things we hold up as the meaning of it all – success, the house on the hill, the shiny car, the World Series title – the things we decide are worth filtering out the little things for – are they so great?” (Yogis, 2017, p. 228).

One of the main things I loved about All Our Waves Are Water is that it provides a myriad of metaphors to help readers examine the overall quality of their lives. It was also a pleasant, but unexpected, surprise to find that a lot of the symbolism in the book seamlessly applies to the expressive nature of both physical and mental illness.

“You couldn’t run away from sadness any more than a river can run uphill… Life was sad. Really sad. Loss. Sickness. Cruelty. Death. There was no way around it. But sadness, when it was always allowed to be itself, was strangely not sad. Sadness was just sadness. Tears just salt water” (Yogis, 2017, p. 41).

Yogis’ accounts also offer readers critical lessons in coping with the pain and disappointment that’s inherent to the inherent obstacles to health and well-being when you’ve been diagnosed with a physical or mental disease as well.

“…the ‘run-of-the-mill person,’ when shot with an arrow, ‘sorrows, grieves, and laments, beats his breast, becomes distraught. So he feels two pains, physical and mental… the pains of two arrows.’ The person trained in mindfulness, however, when shot with an arrow, feels only the physical pain and ‘does not sorrow, grieve, or lament, does not beat his breast or become distraught. So he feels one pain: physical, but not mental” (Yogis, 2017, p. 190).

Could something so minimal and nearly effortless such as mindfulness be the hidden secret to having a happy life? Maybe, maybe not. But isn’t it worth trying to find out? Plus, it’s hard to argue against all the scientific research that suggests that practicing positive psychology can teach chronic illness patients how to effectively cope with pain and symptoms, thereby improving therapeutic outcomes and minimizing the need for pharmaceutical interventions in treating physiological and psychological disorders (Ghosh & Deb, 2017).

“In other words, you witness what’s in front of you – breath, sensation, thoughts, feelings – without trying to change what’s in front of you… scientists now know that doing this simple act every day increases immune function, decreases pain and inflammation, increases positive emotions, decreases depression, and on and on. Doctors are now prescribing mindfulness for everything from back pain to postpartum depression. But for early Buddhists the point was not only getting better grades, fewer colds, and feeling a little happier. It was to actually end suffering – like, for good. Thoughts create reality, when the thinking, and suffering is an experience in the mind. Master your thoughts – or simply let them be without constant reactions and identification – and you master reality. You master being” (Yogis, 2017, p. 37).

Whether you have a chronic condition or not, there’s still quite a lot to learn from this book since it’s full of the raw emotions that consistently thwart and frustrate personal growth. Part of the trouble with trying to gauge personal happiness and success accurately is that the only thing we have to compare these variables to is the modern standards that American’s use to measure and define levels of success, such as beauty, productivity, and income – none of which come even close to resembling any aspect of spirituality and enlightenment. Still, perhaps the most important lesson found in the entire book is learning how to adapt to the ebb and flow of the waves of life by approaching conflict in a similar manner as waiting for the perfect set of waves to come. While wading in the water, you can either become restless and angry or you can accept the fact that the ocean is out of your control. In other words, there will always be difficulties in life – it’s simply unavoidable – but it’s how you choose to handle or perceive each individual setback that will ultimately regulate the amount of pain or suffering you experience as a response. Personally, I’d rather bask in the sunshine than not feel the water at all.

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Waiting for that perfect wave while surfing Sebastian Inlet. Photo by Undiagnosed Warrior (2002).

“There are cycles. Some patterns repeat. Some are shocking flash floods. But here is the thing about storms. I don’t wish them on you, but they are coming and would you want it differently? What would we talk about? How would we become strong? How would we get off our lazy asses and look into what is actually going on here? What would we celebrate? Storms, after all, have that rare power to bring us – yes, we humans who love to devour each other and put it on TV to watch again – together” (Yogis, 2017, p. 230).

The hardest decision in life essentially lays in the choice to either run from the storm or ride it out. The only person with enough power to settle on the best course of action, in this case, is you – no one else can choose a path for you. It helps when friends and other loved ones support your journey by offering enough encouragement and motivation to push you forward in attaining your hopes and dreams for the future, even if there may be many obstacles left to overcome. In all reality, that’s truly what life’s journey and spiritual enlightenment are ultimately all about – it’s the endless pursuit of goals and self-actualization in hopes of achieving one’s highest potential so as to gain access to the ever-elusive experience of spiritual awakening (Maslow, 1943). The rest of the time is merely paddling through the choppy water until you reach the eye of the storm so that you can breathe for a moment before starting the process over once again.


All Our Waves Are Water

Image by Jaimal Yogis [http://www.jaimalyogis.com/]

If you’d like to purchase your own copy of All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride, please visit one of the following online retailers:

https://www.amazon.com/All-Our-Waves-Water-Enlightenment/dp/0062405179

https://www.harpercollins.com/9780062405173/all-our-waves-are-water/

https://www.barnesandnoble.com/w/all-our-waves-are-water-jaimal-yogis/1125172299


References:

Ghosh, A., & Deb, A. (2017). Positive Psychology Interventions for Chronic Physical Illnesses: A Systematic Review. Retrieved from https://link.springer.com/article/10.1007/s12646-017-0421-y.

Maslow, A. H. (1943). A theory of human motivation. Psychological Review, 50(4), 370-396. doi: 10.1037/h0054346.

Yogis, J. (2017) All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride. New York, NY: Harper Collins Publishing.

Change it all but can’t change what we’ve been…


Recently there’s been more loss than there has been life,
so the emotional  ups and downs should come as no surprise to me by now.
Intuition tells me that it’s not likely to turn around anytime soon, either.
That’s the reality of being undiagnosed.
Of being chronically ill.
Just waiting for the pendulum to swing back again.
imgWhatIsGrief-feelingsThis UndiagnosedWarrior post is brought to you today by the word: Guilt

Why does chronic illness come with a side-effect of guilt? 
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noun: guilt
  1. the fact of having committed a specified or implied offense or crime.
    “it is the duty of the prosecution to prove the prisoner’s guilt”
    • a feeling of having done wrong or failed in an obligation.
      “he remembered with sudden guilt the letter from his mother that he had not yet read”

Most days I feel bad physically, some days mentally,

but today I feel guilt… and sadness.

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It’s one thing to grieve over the loss of yourself and what you can no longer do, but that’s only just the selfish side of grief. It’s easy to forget the true meaning of grief when illness makes you self-absorbed and over aware of internal feelings with the constant focus on our symptoms. While these feelings are not inherently bad, we can’t discount the fact that chronic illness is a family disease. A friend disease. A work condition. A life disorder.

It can and it will impact EVERYTHING.

My husband’s grandfather passed away today. It wasn’t completely unexpected, but still hard nonetheless. He lives states away from us and we couldn’t be there during his journey home. That’s enough to leave one with a heavy heart. My husband is very close with his family, and especially with his grandfather. It’s truly a tremendous loss. 

He was the family patriarch.

A strong man.

A hard working man.

A war hero. 

He’s not just any man, but a loving

Husband. Father. Grandfather. Friend. 

But what’s worse is all the time that was lost. Lost because of MY ILLNESS. And because my symptoms have taken a turn for the worst, plus the uncertainty of a diagnosis and the unanswered questions about my current state of health, my husband and I decided it would be best if I didn’t make the trip out of state. Can’t risk flying with a lowered immune response or the possibility of unmanaged blood clots and driving 11 hours would be impossible with all the GI problems. It’s hard knowing I can’t be there to pay my respects and knowing I can’t go and support those who often support me.

I feel guilty and ashamed.

But Why?

It’s not like anyone chooses to be sick, it’s just something that happens. I know I didn’t choose this  life. It can happen to anyone at any time. There are absolutely no certainties in life, humans are unfortunately not invincible. And there’s no “get out of chronic illness hell” card laying around to play at the perfect moment. It just happens and we do the best we can with what little strength is left over, but only after our condition has taken nearly every part of “normalcy” away from us. This becomes clearer and clearer to me each day.

So why do we CHOOSE guilt?
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Yes, I said choose.
Although not necessarily a conscious choice, it’s
 still one that we are well aware of.

“It has always seemed that a fear of judgment is the mark of guilt and the burden of insecurity.” (Criss Jami)

While there are many causes for emotional guilt, the reasons are very different when dealing with a chronic illness.

It’s not to cause harm or to knowingly hurt the one’s we love.

It’s because of necessity and self-preservation.

Personally, my guilt stems from:

  1. I feel like I did something, by not doing something.
  2. I feel obligated, despite knowing it may not be the best thing for me or my health.
  3. I feel like everyone will be mad at me or will leave me just like so many other’s in the past.
  4. Fear of letting go. Fear of Failing. Fear of losing myself and others.

Your reasons may be different than mine as well. Emotional guilt is an internal feeling that is very personal to each individual. 

Maybe you feel like you’re a burden to others.

Or how your mood has affected those around you.

Perhaps the feeling of chronic guilt is just another symptom.

But whatever the reason….it’s wrong.

That may sound harsh, but it’s true.

Chronic illness takes a lot out of you. 

You’re constantly battling both your body and your mind.

You don’t have to be perfect. Nobody’s perfect. Not even those who aren’t sick.

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We didn’t choose to be sick, yet we continually feel bad for things we can’t control.

We KNOW it is not our fault.

We’d give anything to be more reliable.

More responsible.

More able…

To do the anythings and everythings.

We also don’t want to let others down.

To disappoint anyone.

We know how that feels all too well.

Chronic illness is unpredictable.

There’s no guarantee that we’ll feel better or worse

at any given time or day.

Learning to let go of undeserved guilt is difficult.

But those who love us will understand our reasonings and respect the decisions that had to be made. It doesn’t make the situation any better, but neither will feeling guilty. There’s a difference between making active choices to hurt others and the choices for self-preservation. 

Please be kind to yourself and set yourself free.

And Always Remember:

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I’m sorry I can’t make it PawPaw,

but I know you’ll be looking out for everyone while I can’t.

Maybe even me.

R.I.P.

You will forever be missed.

And to my loving husband,

thank you for being understanding. 

But more importantly, thank you for being there for me

even though I can’t always return the favor.

Forever and ever.

The Ultimate Survival Guide For When Everything You Eat Makes You Sick: Getting A Diagnosis

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There are literally hundreds of conditions or causes to recurrent abdominal pain and nausea associated with eating, both physiological and psychological in nature. Considering the stomach is the primary organ of the digestive process and has connections to almost every area of the body, it’s not surprising that abdominal dysfunction is a common complaint by many of us that suffer with chronic illness. Reaching a diagnosis for problems associated with the digestive system are tricky, as it is a common complaint of both healthy and chronic patient’s alike. Unfortunately, if your pain or nausea is caused by something other than the usual suspects, especially in conjunction with other non-specific or symptoms, doctor’s can easily write it off as being “in your head”.  

When initial diagnostic tests come back normal and it’s not easily explained by one of the many favorable conditions, then one of two things will happen. Either 1) the doctor will diagnose you with Irritable Bowel Syndrome (IBS) or 2) Determine it’s related to stress or a psychological disorder. No further testing required. In my opinion, using both IBS and stress as a diagnosis is a cop-out and the doctor is being lazy. While I am not saying that IBS does not exist, I feel doctors use it too often without further investigating a differential diagnosis.  For both IBS and stress alike, all kinds of pills and pharmaceutical interventions will be thrown at you, without evidence that you even have any of these conditions. So when the medicine does not work, or has minimal effect, then “you’re just crazy”.

I can’t tell you how many doctor’s, both in general practice, as well as specialty, that have told me to seek psychological intervention. They ran minimal tests, tried every medication on the market to “treat my symptoms”, so then obviously… it must be for attention then. What’s worse is I started to believe them.  Between these doctor’s not believing me, friends and family not understanding (who even to this day can ask me if it’s not all “stress related”), and no reasonable explanation for all the pain I felt every single time I would eat, how could I not think I was crazy? I went to therapy and counseling multiple times. And even when I was deemed “cured” from all the anxiety related diagnoses, the pain only got worse. In fact, after being “panic attack free” for so long, my abdominal symptoms are the worst they have ever been. 

As I mentioned in a previous post, I initially “treated” the pain I would get after eating by simply putting the associated food on my avoid list. But after years of food making me sick, the list of trigger foods became so large, it was easier to have a list of the minimal number of food on a “safe list”. This behavior also brought on associations between foods, as one time I got sick when I had this  and then had that within a few hours, so they “mixed bad”. My friend Stacie would always point out that she had never met anyone who had to think so decisively about they had consumed in a day to determine how it would all come together. Just recently, actually, in a letter she kindly wrote for me on my condition, she stated, ” I have known Nikki for over 4 years, so have gotten to see how her health issues started, and have progressed.  When we first met, Nikki had issues with certain foods and certain drinks and how they would “mix”. ” It’s almost a joke among my close friends because they know there is so much thought that goes into the timing and choice of foods. It’s unfortunately, my coping mechanism, and the only true control I have over my undiagnosed pain.


So let's put this diagnostic scenario together: 
  • She’s a young female at onset of symptoms. 
  • She HATES food. In fact, she says it makes her “sick”.
  • All initial diagnostic test are normal.
  • She has anxiety and IBS. She’s reported psychology treatment.
  • She organizes her food choices into very specific categories.
  • She “restricts” food to have “control” and refuses to eat many times.
  • She has, at many times in her life, been extremely underweight.

And if you haven’t put the pieces together yet,

I was sent to therapy for diagnosis and treatment for anorexia.


In a way, depending on how you look at it, I DO have an eating disorder. And it is definitely being managed inappropriately and I may have some irrational thoughts as far as the extent of my “trigger list” of things I can’t eat, which I rationalize to myself is to not have associated discomfort and symptoms. Also, it is greatly impacting and disrupting my life. However, in determining if this is abnormal or not, essentially it can be weighed to both sides. If doctor’s could offer answers and a diagnosis, then I’d be able to manage and treat my symptoms properly. 

Luckily, or maybe not so luckily at this point, all systems of my body are now being effected by my illness and symptoms have finally become visual and undeniable. It’s easy to write-off subjective symptoms as being overly dramatic or attention-seeking. Hell, I’ve been accused and treated like I was drug seeking, when I have an extremely low tolerance to pain medications. I mean, let’s be real here. I CANNOT EAT FOOD WITHOUT BEING SICK,  I obviously do not want to take any harsh drugs that will only make the nausea and stomach pain worse. I want to feel better!!!!! But now that they can’t deny that something is wrong, I am finally getting the testing I need to figure it out, beyond the initial scope that my earlier doctors refused to consider. It’s been a long fight to get here, more than it should have been, but at least I am on my way in finding a TRUE diagnosis.

Next tests up:

“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”

Managing Chronic Illness and Work

There’s is nothing scarier than going back to work; undiagnosed and still sick. 

So how do you get through work and chronic illness?

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  1. Whether you choose to disclose your illness or not is completely up to you. There are pros and cons to both sides. For me, I hid my illness, both in my work and personal life, for a long time. But there comes a point when that may not be possible and that’s OK. I’ve been honest with work with what I’ve dealt with. So far, this has helped me more than it has hurt me. It hasn’t made me stop fearing the possibility of someday losing my job or not getting promoted because of it. But what it has done is allowed me to be true to myself, not have to make up excuses for my behavior or absence, and gain understanding from my co-workers. I’m also eligible for accommodations to assist with keeping my job while still learning to manage my condition. What it won’t allow me to do is use my illness as an excuse to not be committed or do my job properly. And even though I won’t feel good everyday, and many days I may not have the energy to perform at my best, as long as I do the best that I can, than I have accomplished something truly great.

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2. While it’s obviously more comfortable and easier to stay in your pajamas all day when you feel awful, putting on nice clothes, doing your hair, and putting make-up on can do wonders for your self-esteem. The boost in your self-image will only help to increase your mood, decrease your anxiety, and improve your overall well-being at least a bit. For many of us dealing with chronic illness, the thought of all this work is exhausting and overwhelming. Just know, it doesn’t have to take you hours to get ready. Plan your outfit the night before, have a quick and easy routine for the morning, and maybe take a shower the night before. For me, getting up a little early to watch the news while drinking coffee before rushing to get ready gives me time to wake up, get an idea of what I need to do that day, and keeps me from having anxiety of the rush to work.

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3. Now, depending on your condition, this may or may not apply to you. For me, it’s probably the only normal thing I can tolerate. And I can personally thank Starbucks for keeping my weight at an average level, because about 600 to 1000 of my calories comes from them daily. You can call me an addict all you want, but I can’t remember a time when I didn’t have ridiculous amounts of fatigue. Plus, it enhances mood and is truly a ritual to get the day going.

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4. Probably the most important: The chronic illness survival kit.  C’mon, you know you all have one. Whether it’s on your bedside table, your purse, or in your work desk, there are just things we need to have with us all times. Here’s what’s in mine:

  • Mints – For Nausea
  • Medications
    • Daily Medications
    • If needed medications (for nausea, pain, headaches, heartburn, allergies, etc.)
    • Inhalers
  • Monitoring Equipment (Oximeter and BP cuff)
  • First aid kit (because being chronically ill also means chronically clumsy)
  • Snacks – For when I’m able to eat or know my blood sugar is low.
  • Water – A necessity
  • Coffee – Also a necessity (for me)
  • Cell Phone with Emergency Numbers
  • My Warrior Doll – To remind me that I am strong and everything IS going to be ok.
  • Chapstick
  • Pen and Paper – to write symptoms or any notes
  • Chewing Gum/Candies – Also for nausea

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5. Be confident in yourself and what you are capable of. I believe in positive affirmations. Read them or even say them out loud every morning. Keep a journal. Post them on your blog. Make a Pinterest folder. Be inspired and find your purpose for the day.

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 And Always Remember:

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