It's Been A While....

Holy crap, we're closing in on the final day of the first quarter of 2016 (March 31st)! Where has the time gone, and where the heck have I been? Well, let me wish you all a very belated - not to mention: procrastinated - "Happy New Year". I hope that the transition into a new year, and the subsequent first few months, has been a smooth/peaceful journey. As for me: in typical professional patient fashion (at least for my specific circumstance), I spent my final moments of 2015 passed out from anesthetics - a distinct contrast from the drunken shenanigans of my friends. In summation: my body still hates me, and decided that surgery would be how I would ring in the new year.

Oh well... alcohol is not my forte, and it was nice to not have to be the designated driver. It was a peaceful - although a touch chaotic - close to an interesting year. In tandem with finally receiving an advanced degree, I celebrated the one year anniversary of my emancipation from supplemental oxygen/subsequent diagnosis that had eluded the physicians and me for eight years. While my lungs are functioning the best they have in what seems a lifetime, my heart is the dastardly fellow behind the health-suck. Although polite society (by "polite", I mean nosy motherf******) may find my particular celebrations odd: while I understand, I simply don't give a damn. Life as a "lab rat" within a research university/hospital for as long as I have, has been the greatest teacher and catalyst of personal growth. Not only have a gained a level of confidence in myself - not to mention the nerve to be honest/outspoken - I have a new respect for my elders.

Don't get me wrong: I by no means am glorifying the aging process in late adulthood. Getting old sucks - I am certainly not going to contest that. However, the greatest perk I see (mind you: an assumption made from numerous observations): is what seems to be a societal acceptance of their elders' outspokenness/lack of filter. I get it, and appreciate it for what it is. So long as there is breath in my body, I am going to fight for my life - to exist and let everyone know/remind others that I am present... I am here.

My experiences as a patient of a stupid amount of physicians (whom are all awesome/lessening in number - thank God), have rendered an abnormal life. While the journey was awful - and my diagnosis is scary/could potentially kill me in the next fifteen or so years: I am incredibly joyful/thankful. There is a face to my health-suck. Although there isn't much information over my condition, I'll take that over nothing. Doctors no longer look at me as a potential psych patient/with blinders - hell, I no longer entertain the idea of "maybe it's in my head". For those of you who have never experienced this, I pray you never do. To live with the possibility of never knowing what is wrong with you, not to mention questioning one's own sanity, on a daily basis: is absolute torture. To know that you are dying from something that eludes the brightest of minds - to be an unwilling participant of an entity that is day-by-day stealing your autonomy/independence, is so horrible. It is being acutely aware of the death of self. It is a loss – no one tells you so, but it is. The cost is enormous.

Subconsciously, I knew what I was getting into… the tests, the poking, the prodding, the questions, the paperwork, and the endless subjection to the unknown: the fear. I understood the cost of becoming a “professional” patient. After all, one isn’t referred to specialists of a research facility when conditions/symptoms can be diagnosed and dealt with at the local level. To be a patient at any research facility is to be subjected to the major leagues of medicine: the cusp of the very fabric of discovery… and what a mind-fuck it all is.

 

Anyway... enough of the "gross" part of this post. Despite the numerous medical escapades/surgeries, 2015 was an awesome year. Any time I am reminded of my shared humanity with others, is a humbling experience that is cause for celebration. The greatest part by far, has been learning how to be a doctor from someone who is what I wish the medical profession had more of. She is an amazing person and healer. As merely a fetus in the journey to become a  physician, I hope that will never forget my experiences as a professional patient, because it has provided me a unique perspective into just how limited medicine/science is and how as a populous: we naively place the profession onto a pedestal. Our expectations are unrealistic - as patients, physicians, and everyone else.

It is my mission to help bridge the gap wedged within the doctor-patient relationship. This is the ultimate goal of this blog - other than as a cathartic means to unload. I already have future posts in the works, so please, be on the lookout. However, please be patient (ha! I made a funny): these things take time - of which, is a luxury for me considering my studies/personal life.

Much love and well wishes for a continued year of explorations, discoveries, and happiness!

My Dear Primary Physician

I am an inhabitant of a world between worlds - one that encompasses what is considered typical among the denizens of Healthyville while simultaneously residing within the Kingdom of Patienthood. My "Middle Earth" is the planet Pre-Med. I am trilingual, fluent in: layperson (everyday, non-fancy speech - my preference as it is non-headache producing and happens to be the official language of Healthyville); sickly - a slang version of layperson, spoken by the tribe of professional patients; and last but not least, medical jargon - a hybrid language comprised of layperson and sickly dialect (as I have said many moons ago, the spoken tongue of healthcare is like having a secret code - it is a language the dances between the worlds of sickness and health: it has to). It's no wonder that I am verbally clumsy! - I can't synchronize my multilingual thoughts with my tongue.

However, I do have to give props to my PCP. Either his undergrad, or medical training, had to have included course work in "Interpretation of the Addle-Brained Word Vomit of a Distractable Mind", because there are times where even I can't translate my own thoughts/words. It's frustrating, because I never used to be this way; yet, somewhere along my travels of Chronieville (chronie is short for a chronically ill person, and no citizens of Healthyville, you may NOT use that term when referencing those like/similar to me... rude), I became less organized in my speech. I don't know how he does it, but somehow he is able to understand me and helps me finesse my thought processes.

Therefore, I am going to brag about him in hopes that whomever comes across this blog - who is struggling with their relationship with their treating physician(s) - know that the type of doctor-patient relationship I share with my PCP, does exist. It is possible to have complete trust and honesty with a healthcare provider other than a nurse (because let's face it, patients have an easier time relating to their nurses than their doctor(s), the majority of the time)....

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My Dear Primary Physician:

Thank you for being amazing. No, not just amazing - but holy freakin' shit, you rock my socks off (even when they are invisible, because my feet are naked) A-M-A-Z-I-N-G! Like, could you please undergo mitosis, so that your daughter cells can enter into other sub-specialties, and be my physicians too: amazing. As in, please educate the specialists I see - and undoubtedly, the ones I'll consult in the near future - via telepathy or smoke signals... even interpretive dance - so that pat in the appointment process is not one of "awkward blind date".

As in, please, please, please - for the love of the Hippocratic Oath - pretty please, with a cherry on top: translate my addle-brained word vomit, including the matching expressions, into entities that make sense to the providers who lack the extensive history we do. Initiate those poor fools, into our club - so that perhaps, for once, I can demonstrate that a fully functioning vocabulary connecting beginning-to-middle, and middle-to-end, does exist. Help me to help the newbies. Just look at them, they are like deer - so skittish. their training didn't prepare them for patients like me, living in the world between the medical field and the human realm.

Yes, I understand what I am asking of you is a huge undertaking: yet, I know you can do it. After all, you have managed to be my number one, for nearly six years (of which, I am forever indebted to you). Surely, you would like to be a beacon of light into these poor, unsuspecting souls, and educate them of my nuances. As these physicians, like you ad several hopefuls like me: came into the field to be a healer... to play an active role in overthrowing disease. Not once, have they considered that perhaps their role as a healer would be that of one who is involved in a role greater than what is taught.

... That perhaps curing disease in not the true calling of a physician, but validating a patient's life and experiences, is.....

Out of all the doctors I am a patient of - and used to be - you are the only one who has openly (as well as actively integrated it into your practice) embraced such a concept. You have realized what I have long ago, something the medical profession is only beginning to encompass: medicine isn't merely disease management. It is the holistic encompassment of mind, body, and soul. To treat the disease, and not the person, is malpractice. My dear Primary Physician, barely over a decade post graduation - just a baby still in this field - so rare, to possess such knowledge and embrace it; this is why you are amazing and what I wish I could get my other physicians to understand (including the ones who have been in practice for decades).

So please, help me to educate those who treat me/will treat me in what they were conditioned against: to redefine failure, so that they are able to reject it... to rebuild the medical community and doctor-patient relationship. We're a great team, and I would like to extend that unto the rest of my healthcare team. Let's show them what true medicine is supposed to look like, sans medications and rules/regulations - even if there is no cure for me, in my lifetime; or, ever.

You are amazing. No doubt about it. Therefore, if you cannot clone yourself - then, do the next best thing: be my ally to other doctors.

Sincerely,

The Zebra Among the Horses

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Disclaimer:

The doctor-patient relationship takes time. It is a mutual give and take, requiring both parties to be honest while remembering one another's shared humanity. You get what you put in. If anything, not being an ass-hat/defensive will make things go much more smoothly (this goes for both parties).

Sticks and Stones

The problem is with words: there are so many, but we yearn to hear just a few. Yet, we get sterile words, or, even worse – nothing. Just silence:  yet another wall to barricade us further within our purgatory. Our cries, our desperation for communion with others through the sanctity of words, are met with defensiveness, apprehension, resentment, anger, frustration, impatience, mockery… another fucking wall. God forbid anyone roam free.

A need to know, to hear something other than inhuman, practiced replies is a threat. It disrupts the status quo – the inner sanctum of distant professionalism. Everything must be cut and dry; disinfected and pristine. The sterile field between you and the healthcare professionals is the space: the “polite” distance between you and the provider(s). Any discrepancy – any disturbance at all – and all hell breaks loose.

We are marginalized. Forget the wires, tubes, needles, tests, lost autonomy, financial/emotional strain: all are a cakewalk compared to dealing with physicians who are so insecure with their knowledge base, that any sort of question from the patient (such as, “Is this normal?”) is the catalyst that sends those of such an ilk, into a tailspin. If you are a rare patient, the .01%, you are the single most terrifying person to care for. You are a threat on so many levels: legally, professionally, ego-wise… Zebras tend to burst bubbles as they stampede through an insecure physician’s office. Why? – Because honey, like me, you can’t be defined by averages and standard protocol. Congratulations, your parents are right: you are special.

Sticks and stones, my dear… but I’ll let you in on a secret: I’d rather be hit by either object, because words are the kind of pain that never goes away….

The Call Button is Broken

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." 

- Maya Angelou 

I carry the above quote with me, wherever I go. It began in the classroom, what seems a lifetime ago, as a tutor. One fall day, my students were asked to read independently; however, they were to be on the lookout for a passage/quote that stood out to them and to write it down on a separate piece of paper. Upon the closure of the class (the last ten/fifteen minutes), each student was prompted share their quote by posting it on the wall for all to see, and explain what it meant to them – as well as do the same with their peers’. 

Maya Angelou’s quote was the one I chose, and consequently: the most popular (no, my kiddos didn’t know I posted the quote; fair/open discussion dictates that sometimes the tutor remain anonymous – translation: I didn’t want them to feel unnecessary pressure to appease me). When everything was said and done, each student had openly discussed topics beyond what is taught within four walls with a maturity and open-mindedness that most adults lack. It was, and to this day, remains one of my favorite memories of the classroom. 

It’s been five years since that golden moment, but the memory lingers – as does the aforementioned quote by Ms. Angelou (may she rest in peace). Her words inspired my former students, now high school graduates, to remember their shared humanity… to imagine each other complexly – the reason I chose it for my classroom, and why I carry it in my heart. 

Most importantly, I attribute Angelou’s words to the heart of medicine – and dare I say: the spine as well… to nurses.

It takes someone special to choose a career in medicine, but there’s something to be said of those who become nurses. To those whom interact with healthcare, whether as a physician or patient, it is no great secret that nurses are an integral part of patient care. Not to dismiss the physician’s role, nor, that of support/ancillary staff – as every single one of you are equally important – but man, nurses are on a level of their own and a force to be reckoned with.

They are the first to triage patients, and are the ones who connect with patients in ways most physicians cannot/are not able to for whatever reason. Nurses are the first and last person a patient sees, in the hospital/clinic; they are the most open about being emotionally vested in their patients. How can they not be? – They help patients bath, dress, ambulate (walk/move about), grieve/vent/laugh, provide comfort/prayer (even with the patient’s family), for goodness’ sake.

The difference in how patients and their loved ones respond to nurses, as opposed to doctors, is significant:

For example, to piss a nurse off is a grave mistake. Why? – Well… let’s see. Nurses start intravenous lines, insert catheters, take vitals (i.e. blood pressure: you know, the cuffs that strangle the hell out of your arm; oh, and let’s not forget those stethoscopes – which can be freezing at times), and perform a variety of other intimate tasks that are medically important: that you would never, in a million years, consider letting your loved ones do.

Rule #1 of Healthcare: DON’T ANGER THOSE WHO CAN LEGALLY INFLICT PAIN UPON YOUR PERSON… not that you will be assaulted, but some processes could be more uncomfortable/take more time than usual. 

Piss off a doctor and what happens? – You have an angry doctor who, depending on level of anger, dispos your care to another physician. If you’re a dangerous pain-in-the-neck, you get security.

Rule #2 of Healthcare: Remember Wheaton’s Law (don’t be a dick)… please be nice. Always. 

ANY WAY… I digress….

National Nurses Week, a week (technically, it is six days; not seven) designated to recognize our nation’s wonderful nurses, is coming to a close. Initially, it was an uphill battle to establish a singular day devoted to the heart of medicine: about eight years for one state (New Jersey; 1978) to officially recognize Nurses Day (May 6^th); twelve years for President Reagan (1982) to sign a proclamation that designated May 6^th as the official day to recognize the amazing work nurses do… although, it only took four years (1974) before President Nixon declared the first of its kind, National Nurses Week – but in February, as opposed to modern day, May.

Sheesh – leave it to the government to complicate things… it’s what they do well.

Since the end is near for such an auspicious occasion (May 12^th) – at least for corporations to suck up to the ones who make the wheels go round: I would like to honor nurses. I have out reached to the public, and asked for their help in creating this special blog. With their permission, I share their experiences with you. 

Dear Nurse,

Palliative care isn't easy - it's exhausting, emotionally taxing, and flat out hard. Taking care of a dying grandparent is one of the hardest things I've done in my life... but you made it easier. 

You were there on the sleepless nights; you were there to provide comfort, to give rest. You became a part of our family in those few days that you were in the house with us.

You swapped war stories with my uncles, cheered on the Tigers with my dad, gave my grandmother a much needed time of rest, and kept grandpa comfortable - and happy - until his final breath.

Thank you to all hospice and home care nurses. It takes a special person with a caring heart to do what you do.

My sincerest thanks this week and every week, for all that you do.

 

Dear Deb, 

Thank you for putting up with my frequent visits because of chronic pain. Also, thank you for helping me when others at the school called bluff on me. You knew there was something wrong, and you helped me when others refused to check me out: saying there was nothing medically wrong with me.

Also, thank you to the many nurses at the Mass General outpatient care center, for making me feel not scared during my many visits and always greeting me with a smile.

 

Dear Nurses at the psych ward in UCLA, 

Thank you. I was going through a rough patch, and you were there. You understood why I needed to knit, and craft, and you helped me figure out ways to do it even there. You listened to me when I was trying to fight through things, and gave me a safe space to breathe in. You even let me sleep in the common room when I was having roommate difficulties. You may not hear this often, but thank you. You are lifesavers.

 

 

Dear nurse at my primary doctor,

Thank you. Thank you for not treating me like a 5 year old when you found out I was afraid of needles. As someone who both has a phobia of needles and has this past January, started the long process of getting a dx [diagnosis] which of course involves a million blood draws, I thank you for treating me like a grownup. Most nurses try to baby me, which always just makes the process longer. Thank you for just getting done what needs to be done.

 

I was at Baylor Grapevine three times, last summer. During two of those visits, I had the same nurse: Betsy. I was struggling with allergic reactions and would stop breathing during sleep.  Betsy was in my room every single time I opened my eyes!  It was her notification to my doctor, that let him know I wasn't well. I am grateful for her dutiful observations.

 

I was just six weeks post having my first son, when I started getting severe pains. It was determined that I had gallbladder disease, and had to have it removed ASAP. So, in August of 2005, I arrived at Plaza Medical Center of Fort Worth and had surgery. Three days later, I returned and was admitted. The pain had returned and was even worse than before: I couldn't walk and had shallow breathing – so, they [the doctors] kept me for two whole weeks, running test after test.

I woke up one morning so upset, so torn – my seven week old baby had gone two weeks without his mom. TWO WEEKS! The nurse came in to check on me that morning, Pat was her name: my sweet savior, Pat! I looked at her and said, “I will rip out my own IVs, so I can get home to my baby! – The doctor better have news today…”

She replied, "Let me see what I can do". Ten minutes later, Pat returned and said, “They are bringing you breakfast. If you can hold it down, they will release you this afternoon”. MUSIC TO MY EARS... She then proceeded to grab my hand, and said, “I have one favor to ask”. I said sure! After that: anything!!! I didn’t expect what she would say to me, next.

She said, “I lost my son at the age of twenty-one, to suicide, on Thanksgiving of last year. Could I please hold your baby, for just a minute?” We both cried. I couldn't imagine losing a child such a way. So, I had my baby brought up to the hospital. She held him so closely, and sang to him softly as I was getting dressed. She handed him back and said, “You’re an amazing mom, and I will forever pray over you and this sweet baby. May God bless you in the years to come.”

And, He sure did. After all these years, and three other babies, I feel confident that I have been divinely blessed.

How do you thank those who have done so much? Words are a dime a dozen, as the old adage goes – but in truth: it’s more complicated than that. It’s a combination of verbal and non-verbal cues (i.e. actions)… it’s why Maya Angelou was spot on, when she said that people will remember how you make them feel. 

So, to retired and current nurses:

Thank you.