Posts under ‘being a patient’

Ah, the whir, buzz, beep and drone of the machine almost drown out all thought. There are no lights, only the sensation that giant magnets embedded in the walls of this machine straight out of science fiction are taking cross-sectional views of my thoracic spine. How nice that I’m not actually being physically sliced in 1 mm-thick pieces. Rather, a virtual model of my spine is being transmitted to a computer that will deliver to my orthopedic surgeon and primary doctor a visually impactful set of images compressed onto a CD-ROM. My body, digitized.

I am once again squeezed into a cold plastic and metal cylinder, my nose just an inch or two from the smooth inner contours of the tube. I have removed my wedding ring, glasses and earring (I am pierced only on the left, dear Readers), and I’m wearing my own t-shirt (white, v-neck, 100% cotton, purchased at JC Penney’s, if you must know) and a ridiculous pair of flimsy blue cotton pants with a fly that won’t close given to me by the radiology tech. Having forgotten to wear socks (it’s hot out and I came to the hospital in sandals and shorts), the aforementioned and very kind tech wrapped my feet in a white blanket and covered me with a second blanket in an effort to make me feel at home and cared for, not to forget the (completely ineffectual) orange earplugs placed in my tender ears. The efforts at creating some semblance of comfort were appreciated, and I did feel cared for and at home (well, as at-home one can feel in a cold room filled with computers, blinking lights, a gigantic magnetic donut, and switches and gauges of unknown purpose).

I have had several MRIs over the last few years, my first one immortalized in this post (”An MRI for I & I“) back in 2006. At that time, apprehensive but curious about the machine and the experience of the tube (and the notorious noisiness of the test), I experienced what I can only call a medicotechnological (yes, it’s really a word) epiphany.

A lifelong fan of electronic music, some of which many people might actually characterize as noise, I found the cacophony, drones, and loud beeping of the MRI magnets both intellectually and musically interesting. At that time, I had been listening to music by the band Matmos, their most famous recordings being music made from electronically recorded samples of noises made during medical procedures such as liposuction. So, to make a long story short, the almost onomatopoeic “noise” of the MRI’s inner workings was actually like an electronic symphony as I lay in my 21st century sarcophagus, and , truth be told, this time my reaction and experience were no different. In fact, I eventually relaxed so much inside that friendly plastic cylinder, I actually had a nap during the last sequence. I guess I figured I had to lay absolutely still anyway, so why not catch a few winks on my insurance company’s nickel? (Thanks to my insurance company’s largesse and my doctor’s clinical astuteness, I take Mirapex for fairly severe Restless Legs Syndrome and Periodic Limb Movement Disorder. Good thing, or trying to lay in that tube totally still may have looked—and felt—quite different.)

Based on my experience with both MRIs and electronic music, I would propose that, rather than medicating anxious and claustrophobic patients with Ativan or Valium prior to MRIs and other such noisome procedures, patients should be enrolled in a four-week course of “Electronic Music Appreciation”. Following a thorough introduction to Brian Eno, Robert Fripp, John Cage, Philip Glass, Matmos, Kraftwerk, and The Boards of Canada, the would-be unhappy, claustrophobic and traumatized MRI recipient would be transformed into an appreciative and well-adjusted patient eager for a repeat MRI at a moment’s notice. (Come to think of it, perhaps insurance companies would balk at actually making the MRI experience more enjoyable. After all, if patients aren’t rattled by the noise and close quarters, they might demand that their doctors order more MRIs and CT Scans so that they can once again have the ultimate sonic and musical experience.

Anyway, if you’re planning to have an MRI yourself, please feel free to email this writer for a primer on electronic music, and for a friendly reminder to always wear socks (preferably clean) when going to the hospital. If, for some reason, you’re afraid that electronic music appreciation is simply not for you and there is virtually no way on Earth that you would actually enjoy (or even revel!) in the knocking and whirring of the giant magnets rotating around you in a plastic donut at 100 miles per hour, simply go your doctor, tell him you’re claustrophobic, and say “Make mine a Valium, doc“.

I am feeling broken today. Working with the disabled and chronically ill, I fully understand the impact that chronic illness can wreak on one’s life. As much as I serve as a beacon to my patients as they struggle with their multiple infirmities, my own infirmities are coming home to roost in a big way. It seems like I myself am yet another person with multiple comorbidities who is struggling to keep my head above water. With a personal medical appointment every day this week, I can empathize with how my patients’ lives are dominated by appointments. My life is equally dominated of late, yet those appointments are weaved within and around a full-time work schedule.

Physically, chronic pain—so far unresponsive to every approach or modality—continues to directly impact my overall quality of life. An official diagnosis of Restless Legs Syndrome (yes, it’s a serious disease with a silly name) explains my chronic loss of sleep and resulting exhaustion. The new medication I started last night—Mirapex—has filled my head with what at times seems like cotton candy and at other times like water. Over all, not a very pleasant sensation—sort of like having a balloon for a head. This too may pass.

Beyond the purely physical, reactivated PTSD (Post-Traumatic Stress Disorder) coupled with depression often undermine my attempts at self-healing, although I see self-care and self-directed healing as intrinsic to my eventual recovery and actualization.

This being a patient is hard work. It’s also exhausting. When one feels that one’s body has betrayed its true nature, the struggle to lead that corporeal shell back to vibrant health can seem like a truly uphill battle. One fear I have regarding my upcoming leave of absence is that it will be dominated by medical appointments rather than naps on the couch. A realistic concern?

Some months ago, I posted a missive about the large cast of characters which make up my personalized team of healthcare providers. I often feel that I myself need a program simply to keep them all straight.

This chronic illness business is really a drag. Who wouldn’t rather do anything else but continue to lick one’s own wounds? But we all come into this world with lessons to learn, and perhaps one of my lessons is to learn to live with and overcome pain and adversity. If that is indeed the case, I’m readying myself for the overcoming part now. I’ve lived with it, slept with it, held it in my hand. It’s time to let the suffering go.

The pain is at its worst in the middle of the night. Like tonight. It’s almost 4 a.m., and I was eventually so uncomfortable that I needed to simply get out of bed, stop trying to sleep, and distract myself with writing. So here I am.

It is times like these when I realize why so many of my patients take Oxycontin and other morphine derivatives, some occasionally turning to substance abuse. Pain takes over one’s life, hijacks the brain, and and impacts every aspect of life: work, play, rest, sleep, sex, relationships, self-image. It pervades one’s existence like an unwanted thread that weaves itself insidiously into life’s tapestry.

On Tuesday, I will have a special and specific spinal injection which is essentially an experiment to determine if a more permanent approach—a Radiofrequency Ablation—will turn off my back pain, if not permanently, then for a prolonged period. However, if Tuesday’s injection fails to provide significant pain relief, the ablation will not be pursued and we will be back to the drawing board with fewer options on the table. I am hopeful but guarded, aware that previous injections of three different varieties provided little to no relief.

Unfortunately for me, my pain syndrome is such that no treatment has yet been found which can significantly reduce my discomfort. Chiropractic, spinal injections, yoga, massage, swimming, weight loss, heat and cold application, Reiki, a TENS unit, neuromuscular therapy—nothing has yet been able to significantly touch the pain and assuage the suffering it causes. Adding insult to injury, I have developed Restless Legs Syndrome over the last few years, a disease with a pathetic name but far-reaching deleterious effects. Late nights can be an exercise in both patience and frustration.

Suffice it to say that chronic pain has invaded my life and impacts every aspect of my days and nights. My compassion for patients with pain is made more keen through personal experience, and I have learned all too well that subjectively describing pain and attempting to quantify and qualify it objectively can be a monumental task which all too often fails to truly communicate one’s true level of suffering. These wee hours of the morning are often the most frustrating, when sleep is all one desires, but the body fails to comply with the overarching fatigue coursing through one’s body.

For any of you out there who are up at 4 a.m. and hurting, you are certainly not alone.

Remember those silly t-shirts that said, “My parents traveled to (name of city) and all I got was this lousy t-shirt”? Well, my body and brain are saying a similar thing to me this morning: “Our resident mind decided we needed a muscle relaxant last night and all we got was this lousy hangover”.

My back was killing me last night, even after a Neuromuscular Therapy appointment, an hour on the TENS unit, and a little more bodywork by Mary in the evening. So, I took a muscle relaxant to decrease the muscle spasms in my lower and mid back, and hoped that I perhaps might sleep through the night, something I haven’t done for weeks now. Sadly, I still awoke at 2am, did yoga for twenty minutes, subsequently removing myself to the downstairs bedroom for the remainder of the night. Did I sleep? Yes, with continued discomfort, and awoke with a brain filled with stuperous cotton candy, awful cotton mouth, and a body ready for nothing but lethargy. I had to laugh, knowing that today would be a 12-hour workday, with per diem home visits from 7:30 to 9:00am, regular job from 9 to 5, and evening clinic from 5 to 8pm. Amphetamines, anyone?

That said, my day today has been spent assuaging the pain of others, obtaining narcotic scripts for chronic pain, giving attention to others’ aches, pains, and complaints. Sometimes, based upon my relationship with a patient, I might decide to share with them my own struggles with chronic pain if I feel that my personal disclosure would be of some benefit. More often than not, though, I realize that I, as a working professional, have access to many other treatment choices (ie: massage, neuromuscular therapy, acupuncture, a gym with a pool), and thus the disclosing of my own struggle could, in fact, elicit envy in my patient rather than my intended purpose of commonality. Therapeutic use of self is a tender beast.

Speaking of tender beasts, my back twinges and aches now as I type. Non-steriodal anti-inflammatories (NSAIDs) like Tylenol, Motrin, and Aleve do nothing. Massage seems only to scratch the surface now. Trigger-point injections did almost nothing, and a spinal injection yielded less than two weeks of moderate relief. Where to turn? My patients take narcotics for chronic pain: Oxycontin, oxycodone, Fentanyl, Percocet, Vicodin. I’m just not willing to go there. So, here we are, me and my pain. Oh yeah, and the hangover, too.

Over time, pain becomes part of the physical and psychological landscape, like the feeling you have being in your own skin, or the familiar brush of one’s arm against one’s side. Pain becomes an appendage, something that’s just there, like an extra limb growing in the wrong place. It becomes difficult to even imagine what it was like to not have this pain. Was there even a time when it wasn’t there?

So, when my patients complain of pain and ask for meds, I serve them as best I can, knowing full well that those meds may mask the pain to some extent, but the underlying pathology—if one can be discerned at all—often remains a mystery. Even those with correctable pathologies—a herniated disc, for example—may find little or no relief after spinal surgery, the pain sometimes even worse than before their operation. Sadly, there are many cases where the cure indeed seems worse than the disease. And then it’s too late.

For now, I grin and bear it, laugh if I can, and try to make friends with this ache that just never seems to go away. If you, dear Reader, suffer from a similar chronic and recalcitrant affliction, welcome to an enormous club. Membership is free, of course, but the price you will pay is dear.

Over time, I have come to share my own health challenges relatively frequently here on Digital Doorway, from the humbling experience of being a patient, living with Multiple Chemical Sensitivity, long-term struggles with depression, and adventures with chronic pain. As my own healthcare becomes more complex and challenging, my personal, experiential understanding of my patients’ struggles also becomes more keen.

As I have related before, the majority of my patients have multiple co-morbidities, many symptoms of which mimic, exacerbate, or otherwise interact with the other co-existing conditions and symptom constellations. The presence of multiple chronic illnesses and related symptoms generally leads to the individual in question navigating an increasing number of providers and medical specialists. As I have described in previous posts, I spend a great deal of my professional time assisting my patients with coordinating their complicated care, often serving as the liaison and conduit of information between multiple providers who may or may not freely choose to communicate clearly with one another in a timely manner. In many ways, I am the outside agent who helps the left hand of the medical treatment team to know what the right hand is doing. When there are more than two hands—which is generally the case in most instances—my work is multiplied, as is the room for mistakes, miscalculations, and poor (or absent) communication. The resulting day-to-day action draws on both the worlds of tragedy and comedy, with no lack of soap opera intrigue for those who like that sort of thing.

Lacking my own care manager vis-a-vis my multiple medical challenges (as do the majority of patients, really), I juggle multiple appointments, tests, and various treatments. Reviewing the litany of upcoming medical appointments in my Palm Pilot recently, I was struck by the growing cast of professional characters who I have enlisted in my own production known with the working title of: “Keith’s Health Care; Being A Play With Too Many Acts, An Ever-Increasing Cast of Characters, and Far Too Few Intermissions.” Most of the cast play themselves quite well, needing precious little coaching from the wings. The trouble these days, though, is that the curtain seems to always be up, and the plot just never gets resolved. Who wrote this thing, anyway, and where did that orchestra come from?

Nurse Keith—-played by none other than Nurse Keith (Who else could do it? Maybe a cross between Ben Stiller and Woody Allen?)

Primary Care Physician—-important and consistent, sometimes seems superfluous

Psychotherapist—-newest cast member, but sure to be a star

Oral Surgeon—-hopefully making only a brief cameo, never to be seen again

Physiatrist—-kind and professional but limited in scope, may fade to background

Psychiatrist—-useful and insightful; only makes an appearance every six months, thank God

Dentist—-infrequent cast member, as well, but still important, along with rotating hygienist

Environmental Illness/MCS Specialist MD—-the indispensable cornerstone of current care team

MCS Doc’s Nurse—-very important resource for information and support

Gastroenterologist—-will debut in May, hopefully for a very brief appearance

Neuromuscular Therapist—someone I always look forward to seeing, even when it hurts

Chiropractor—-currently on the back-burner, but a casting-call may soon be advertised

Acupuncturist—-character in development

While the reviews are slow in coming, some positive press has been seen in the blogosphere. Some feel there are not enough holistic providers in the cast, while others think allopathic medical providers should dominate the ranks of the dramatis personae. Parts of the script may need re-working, while some critics have panned the whole effort as self-indulgent and wasteful. Nonetheless, the cast will push forward with the current season, mixing comedy, drama, tragedy, farce, as well as Theatre of the Absurd.

So dear Readers, feel free to add your reviews to that of the others, and join us at any time for another installment in this post-modern journey of human existence. The show runs daily, and admission is, as always, simply a small payment of your precious time and attention.

We’ve all been through it. The proverbial “mill” tests the tenacity of each of us time and again. The ability to cope, survive, and learn from those tests is, I think, our paramount task on this earth.

Many of my patients have been through more than a mill—it seems as if they’ve survived a war. Abuse, neglect, violence, incarceration, addiction, disability, oppression, racism, classism, chronic and acute illness—it’s sometimes a wonder that some people simply get out of bed in the morning.

As for myself, my own personal mill has also left its teeth-marks on my soul and spirit. As I have recounted in these electronic pages, chronic pain and Multiple Chemical Sensitivity have certainly come to the fore in the last two years. Other chronic physical illnesses—gastroesophageal reflux disease, benign prostatic hypertrophy (BPH), hyperlipidemia, Restless Legs Syndrome (RLS)—all inform my understanding of what life is like when the body and brain seem to run amok in a field of apparent dysfunction. I love my body, but its seeming predilection for such instability can certainly give me pause.

A lifelong struggle with depression has provided me with an almost constant companion with whom I tussle and fight. Perhaps my compassion and empathy for many of my patients’ psychoemotional and spiritual challenges stem from my intimate acquaintance with the needy and persistent face of depression. New Agey types urge one to “break free” of depression, to disallow its grip, painting depression and mental illness in general as personal flaws to be overcome by the power of the mind and the will. Certainly, the mind is a powerful tool and can be focused towards the positive or the negative, but I believe that there is simply always a light and a dark, a yin and a yang, and one’s passage through the clouds—whether brief or long-lived—can also be fodder for growth and self-actualization. When my best friend was murdered in 2001, it was difficult to imagine ever being happy again, and PTSD became more than just an abstraction. But five years later, joy is still possible, although the pain still lingers. Contradictions abound.

Some of us live lives relatively free from tragedy and pain, while others seem to swim in the waters of suffering from early childhood. Eastern philosophies speak of the laws of karma. Other spiritual teachings speak of the choices we make prior to our birth. Still others will say that your life is the manifestation of your thoughts, be they fearful or wondrous. Many will simply admit that the universe is governed by chaos, and we are all unwitting victims of a random and often savage game of chance.

Samuel Beckett once said that the amount of tears in the world is constant. And Nietzsche once went so far as to declare that “God is dead”, to which, it is said, God ironically replied, “Nietzsche is dead”. The fact is, any argument for or against the necessity and reality of suffering is worthy of discussion, but from my point of view, what one actually does with that experience is the key. The assignment of blame for the source of the suffering (while often entertaining when discussing the suffering of others and not one’s self), is at the very least counter-productive, and at worst cruel and unusual.

Are we all responsible for our lives? Of course, but we cannot always be held solely responsible for our life circumstance, our physiology, our social standing, and our genetic imprinting. As much as I would like to “get over” depression and neatly dispose of it in some psychic coffin in my graveyard of personal moral failings, perhaps the best I can do is learn to live with its presence, control its grip on my life, and rise above the alleged limitations which it appears to impose on my life’s trajectory. Or perhaps, some how, at some point, I could even defeat it utterly.

The challenges of life are enormous and frequently overwhelming, and I do my best to not envy others their apparently “lighter load”. Sure, those enormously successful individuals with multiple PhD’s, a trust fund, and four months of vacation abroad each year can certainly engender great envy or jealousy on my part. That grass on the other side of the fence can often look mighty soft and inviting. But my little garden, crabgrass and all, is what’s on the proverbial plate, and this body, this mind, and this life are the apparently flawed tools with which I have been granted a very short opportunity for cultivation and contemplation. If the number of tears in the world is actually constant, then the amount of joy in the world must be limitless. And that’s where the story begins.

I have previously posted about Multiple Chemical Sensitivity (MCS) and my struggles with its implications for my daily life. Luckily, as our symptoms worsen, Mary and I are both seeing an MD in our area whose practice specializes in the treatment of MCS, even as the American Medical Association still refuses to recognize MCS as a true physical illness. MCS America, an advocacy organization, has petitioned the AMA, CDC, WHO, and other powerful bodies to finally recognize MCS as a physical illness, opening doors for research dollars, insurance reimbursement for treatment, and all of the benefits the sufferers of a certified illness receive. I am joining that political battle, and attach here a letter which I have drafted to the AMA which will also be cc’d to the WHO, CDC, and National Institute of Environmental Health Sciences (NIEHS). If anyone reading this post is moved to draft a letter or make a call themselves, I also attach names and addresses of key figurres and organzations below.

Thanks for taking some time to learn about this issue close to my heart (and health).

Dr. William G. Plested, III, MD, President
Board of Trustees
American Medical Association
515 N. State Street
Chicago, IL 60610

Dear Dr. Plested,

I am writing in regards to the petition which you have received from MCS America vis-à-vis the recognition of Multiple Chemical Sensitivity (MCS) as a physical condition.

As a registered nurse living with Multiple Chemical Senstivity, I am aware that the American Medical Association has yet to accept MCS as a viable physical diagnosis on the grounds that there is no known etiology and a paucity of replicable research. We are aware that Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, and Autism are all accepted diagnoses also lacking in known etiology, yet the Americans who suffer from these conditions benefit from research funding and reimbursible care under insurance coverage due to their official status as diseases. Thousands of individuals suffer from life-challenging symptoms due to exposure to various environmental chemicals and toxins, yet these individuals’ conditions are relegated to “psychogenic” second-class citizenship, thus deprived of care for their symptoms under most insurance coverage.

You may be aware that 32 states have now recognized Multiple Chemical Sensitivity/Toxic Injury Awareness Month by state proclamation, and ICD-10 codes have now been developed vis-à-vis symptoms related to toxin exposure and its symptomatology. While the Americans with Disabilities Act does allow for reasonable accomodations for individuals with MCS in the workplace, Medicare and Medicaid will not reimburse for any treatments prescribed for diagnostic tests or symptom control, leaving thousands of Americans paying out of pocket for medical expenses related to MCS. Accepted only as a psychogenic disease, there has still been no empiric study which documents the effectiveness of psychotherapy for remission of MCS-related symptoms, although individuals with MCS do find counseling helpful in terms of the resultant social isolation and loss of productivity which results from the often debilitating symptoms.

New diseases are frequently discovered, classified, and subsequently codified so that the medical, insurance and research communities can then study, treat, and determine the cause of the newly identified disorder. In the late 20^th century, both Fibromyalgia and Chronic Fatigue Syndrome were looked upon as psychogenic disorders with no apparent cause. Now, through recognition and acceptance, fully reimbursable medical treatments are available, and research has continued in order to discover the etiology of these evasive conditions which affect thousands, if not millions, of Americans. Autism, for which no known etiology has been found to date, also receives millions of dollars of research funding each year in order to advance the understanding of a disease with wide distribution among the country’s population. And I am sure that I need not remind you that addiction and obesity are also now accepted as diseases rather than personal failings, acceptance of which has also exponentially increased availability of research funds and medical treatment reimbursable by insurance.

The fragrance and chemical industry is one of the most unregulated industries in our country today. Trade secrets are jealously guarded, and American children and adults are unknowingly exposed on a daily basis to countless chemicals with known neurological effects. It is no wonder that thousands of Americans have developed sensitivities and reactive symptoms to many of these compounds which permeate our air, water, household products, and food chain.

Please examine this issue closely, and you will see that there is no reason why Multiple Chemical Sensitivity should not be recognized as a viable physical/medical diagnosis. I implore you to support the many Americans lacking healthcare coverage for such debilitating symptoms, and recognize MCS for what it is: a chronic, often debilitating disease of unknown etiology deserving of empirical research, diagnostic testing, and compassionate treatment and symptom management from the medical and insurance communities.

Thank you for your time and consideration.

_______________________________________________________________

For those of you moved to take action:

Sample Script:

“Hi, my name is __________________and I’m calling in regards to the petition you recently received from MCS America. I wanted to voice my support for MCS recognition as a physical condition and ask what your plans are to accommodated this request.”

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Contact \nInformation:

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\n

\n

\n

Dr. \nJulie Louise Gerberding, M.D., M.P.H., Director

\n

Centers \nfor Disease Control and Prevention

\n

1600 Clifton \nRoad

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Atlanta, \nGA 30333

\n

",1] ); //–>

Contact Information:

Dr. Julie Louise Gerberding, M.D., M.P.H., Director

Centers for Disease Control and Prevention

1600 Clifton Road

Atlanta, GA 30333

<!– D(["mb","1-404-639-7000

\n

1-800-311-3435

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http://www.cdc.gov/netinfo.htm

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\n

Donald E. Shriber, JD, MPH, \nDirector, \nCDC Washington

\n

CDC \nWashington

\n

200 Independence Avenue, \nSW, Room 746G

\n

Washington, DC 20201

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Phone: 202-690-8598
Fax: 202-690-7519

\n

\n

David A. Schwartz, M.D., Director

\n

National \nInstitute of Environmental Health Sciences

\n

",1] ); //–>1-404-639-7000

1-800-311-3435

http://www.cdc.gov/netinfo.htm

Donald E. Shriber, JD, MPH, Director, CDC Washington

CDC Washington

200 Independence Avenue, SW, Room 746G

Washington, DC 20201

Phone: 202-690-8598
Fax: 202-690-7519

David A. Schwartz, M.D., Director

National Institute of Environmental Health Sciences

<!– D(["mb","P.O. Box 12233, Research Triangle Park

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NC 27709-2233
Phone: \n1-919-541-3201
FAX: 1-919-541-2260

\n

webcenter@niehs.nih.gov

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\n

Dr. Margaret Chan, Director-General \n

\n

WHO Liaison Office in Washington

\n

\n

\n

\n

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info@who.int

\n

",1] ); //–>P.O. Box 12233, Research Triangle Park

NC 27709-2233
Phone: 1-919-541-3201
FAX: 1-919-541-2260

webcenter@niehs.nih.gov

Dr. Margaret Chan, Director-General

WHO Liaison Office in Washington

info@who.int

<!– D(["mb","Daniel Epstein (Washington D.C., \nUSA)
WHO Regional Office for the Americas
1-202-974-3459
epsteind@paho.org \n

\n

\n

Thank You!