Thursday, July 15, 2010

Evidence-Based Medical Mountain Climbing: For Quality of Life Enthusiasts

As a born nature enthusiast I needed to shift my perspective as I found myself in the midst of an adventure of alternate kind…

The first 29 years of my life were spent in the Finger Lakes Region of Central New York State. Waterfalls, gorges, country roads, camp fires, rolling hills and the beautiful tapestry of fall foliage beckoned my senses at every waking moment. I even set up my bed in the middle of the living room at one point just to wake up to the “simple things”: fox running through the orchard; the pheasant family scurrying under the forsythia bush; the colors of sunrise and the morning glories in full bloom. I sampled the rest of the country’s raw beauty the summer of 2004. Camping in the back of my husband's F-150 pick-up truck as we trekked out west visiting many of our nation’s best parks and "Cecret" lakes (Wasatch Mtns, Utah). So many “natural” adventures and such good times!!
Rocks, I love to collect them. I have rocks from all over the country. Rocks are nature’s foundation. Yosemite National Park is an excellent place to experience the massive strength that the presence of solid stone creates.

Metaphors can be a great way to share information in a way that is easily understood by most who are interested in understanding. Metaphors are one of my favorite ways to share information. Evidence-Based Medical Mountain Climbing: For Quality of Life Enthusiasts… this phrase has many metaphors tucked into its meaning.

“Evidence-Based” is the phrase of the day if you work in the health care field. The goal is that all health care diagnoses and treatments directly stem from “rock-solid” scientifically researched proof. Guessing and grouping is “out”, evidence-based practice is “in”, a sort of, “prove it” mentality. This is good news for patients, and can provide concrete treatment guidelines for health care providers.

“Medical Mountain Climbing” metaphorically describes a shift in my nature enthusiast perspective. Instead of climbing the stone mountains of Yosemite, I imagine climbing nature’s “Rocky Health Mountains” related to managing wellness.

“Quality of Life Enthusiasts” are people who want to make the most out of wherever they are on the natural spectrum of human wellness.

Auto Biographical Information

Perseverance/ Transcendence

I am a country girl from the Appalachian Culture that developed into a teen mother, then into a divorce’ with two young daughters, all before 22 years of age.
Some label my history dysfunctional…maybe…
As I reflect on my life today I appreciate my early trials as a type of “training-wheel” period. Sure my knees got skinned up, but I have developed excellent problem-solving ability. I can buy an entire name brand outfit for less than $3 or feed a family of three health conscious meals on $30 per week (terrific resource allocation ability). Now at 40, I have a comfortable home, a loving husband, four terrific children, two dogs, two cars, and a picket fence. The domestic stability is here, the finances are sufficient and our spirituality is growing. I never quit. I have always tried very hard to look at every situation from several perspectives. Each challenge in life has been a learning experience and my wellness journey is consistent with this pattern.

Becoming a Nurse

I have always found great personal reward in helping others.
Some label my personality as codependent… maybe…
To me nurses have the opportunity to be the most effective “wellness guides”, full of good will and insight. The best nurses are the ones that understand “The Bigger Picture” of life’s journey, and then apply their energy in helping patients through the hard times. This is who I am. I have never been the best at reciting every potential biochemical interaction but I have a good eye for assessing disruptions in well being then taking appropriate action steps to address the situation. I see individuals as part of a greater whole and strive to facilitate optimal comprehensive wellness. My life’s goal would be to leave a significant “nurse footprint” (as opposed to a “carbon footprint”) where I once existed.

I became a Registered Nurse in 1994 when I successfully graduated a two year associate degree program. My bachelor of science in nursing was completed in May 2004. I remain uncertain if further formal education is in my horizon. However, at present I have made it through my fourth year of wellness work, attending the University of Chronic Illness and Rare Disorders (another life metaphor).
The best nurse “wellness guides” are the ones who have “been there” themselves. They have hiked the toughest health journeys. They have survived the most adventurous wellness climbs. They understand the terrain. They know the best paths to take and how to avoid unnecessary tragedies. I have “been there”. I have hiked it. I live it. When the path ends, I “blaze” a new trail to reach my goal. I am a survivor! I know some things that work. I know some things to avoid. I will never “know it all”, but I will always continue to learn. I want to help others manage their disruptions in well being. So, let’s go hiking!

Some Medical Mountain Climbing Necessities

Comfortable shoes with good support: Primary Care Provider that is the “right fit”

Can you picture what it would be like to finish a five mile hike wearing a pair of high heels or a pair of shoes two sizes to small… pure agony, especially on rough uphill terrain! That is exactly what it feels like to go “Medical Mountain Climbing” during a time of illness with the wrong Primary Care Provider. A health care provider that does not “fit” your personal needs or make you feel comfortable with “good support” should be considered for the “Good Will” shoe pile. Some specialists have exquisite specialized knowledge and ability but are seriously lacking in the bedside manner department. Others are superb with their social skills but do not have the specialized skills that your condition requires. What can you do? Well, here is another analogy for you… I own about 20 pair of shoes and as of today my “Medical Mountain Climbing” team consists of approximately 9 physicians.

Primary Care Doctor- Team Leader
ENT Specialist
Porphyria Specialist

Out of my 20 pair of shoes there is only one pair that I would wear hiking in rough terrain. My hiking shoes are very comfortable with good soles and excellent support. The other shoes have their place in my life, but not on the trail. These trail shoes represent the role of Primary Care Physician. A Primary Care Provider (PCP) should be someone you are comfortable with on a long-term basis, someone you can trust, someone you respect, someone who respects you, someone with a good soul, and someone who provides excellent support when you really need it. Like your hiking shoes, your PCP should be an essential part of every mountain climbing adventure. It can take awhile to find the right PCP fit for your personality type and health situation. Keep shopping until the shoe fits!
The other 19 types of “shoes” in my closet represent the other 8 specially trained physicians. A specific physician is required for each specialized health situation. Like choosing hiking shoes or dress heals for a black tie cocktail party. Everything has a place. So… if my dress heals look really nice but hurt my feet terribly, I will wear them for the occasion. Just like the really smart specialist who lacks bedside manner. I need the ability of the specialist to reach my wellness goal, so I am willing to endure the pain in my… foot to feel better in the long-run.

Trusted Companions: Friends, Family, Spiritual Group, Pets… Feeling Cared For

Hiking alone is dangerous. It is always safer and more fulfilling with a good companion. This one can be tricky. I am the type of person who is more comfortable with a few close friends that are long-term yet do not require a great deal of daily time investment. Quality time is valued over quantity. I prefer the privacy of sharing personal events with one or two of my closest family members or friends. Longer “health hikes” can be very draining and sometimes require an infusion of new energy on the trail. I guess what I mean is that sometimes I can sense when I need to stop relying on one companion, let them rest for awhile and seek my support elsewhere. Some of my alternate support network consists of: church peers, once a month coffee shop get-togethers, Pet Therapy with my 9 pound Silky Terrier Trinket, Internet support groups, and journaling. I also find that telephoning people that I haven’t talked to in a long while provides a temporary reprieve from my own situation by actively listening to their life updates. Providing direct patient care as a nurse is also a therapeutic technique that I use to take my attention off my own struggles and focus on the struggles of others.
Everyone’s trail will come to an end eventually. Ending alone by myself would really make me sad. I try to model the type of “through thick and thin” true companionship that I hope to receive throughout the trail of life.

Back Pack: Your personal health Record to carry all of your medical information

Much of my nursing experience from 1994 through 2010 has been providing Comprehensive Medical Case Management and Health Education. The problem is that I have always found it much easier to take care of someone else than it is to take care of myself. I am learning to be a good self-advocate. I am learning to keep thorough records and initiate evidenced-based discussions. I am also learning to research possible connections related to health systems, functions and dysfunctions. When you have 5 to 15 minutes with the physician you learn to make the most of every minute!

Keeping a “Personal Health Record” divided into sections (test results, research, and history) has been a terrific “Backpack” to organize and carry my information “necessities” whenever I go “Health Hiking” or “Medical Mountain Climbing”. Inevitably with several physicians communication decreases exponentially with each new physician added to the team. I get and keep copies of all medical tests related to my health. Almost every appointment that I go to my copies are needed because the physician has not received a copy of his or her own. Carrying my own copies saves time, provides necessary health information and makes the most out of each physician evaluation.

Remember the more efficiently packed the backpack, holding all “Medical Mountain Climbing” necessities (in this case health information) the easier the hike!

Map/ Atlas: Computer/ Library (scholarly research & reputable sites)

A map shows you where you are, where you want to go and various routes to get from one place to the other. A map also has an interpretive key. Researching individual health conditions can be like buying a “Health Hiking Map”. Identifying individual signs and symptoms is the first step in using the “Health Hiking Map” of research. Signs and symptoms include objective and subjective data. Things that can be measured via visual inspection (like a rash), physical touch (like a lump), auscultation (abnormal heart sound), or medical testing (high cholesterol), as well as things only you can feel (like nausea).

Good research sources include: physicians, public libraries, hospital libraries, college libraries, scholarly journals and reputable Internet sites.

Once you know where you are on the map of wellness, you can identify where you want to be, then figure out which path to take to get there. For example: For three years I was trapped in a downward spiral of increasing fatigue, recurrent illnesses, and an ice eating addiction that had me eating six to ten freezer trays of ice a day. I felt miserable (point A). I wanted to improve my energy, increase the strength of my immune system and go for two hours without chewing on ice. I wanted a better quality of life (point B). I needed to find a map to assist me in my “hike” from point A to point B.

Independent Research, Integrated Medicine Practitioners, Traditional Medical Doctors, Peers, Family, Friends, and a lot of 4am talks with God have brought me much closer to point B. 8 weeks of intravenous Ferritin, corrected my iron deficiency. I no longer crave ice.
I have been diagnosed with Acute Intermittent Porphyria, a genetically inherited disease. I have several nutritional deficits with an undetermined cause.
I am post menopausal due to a complete hysterectomy.
I have chronic autoimmune thyroiditis with nodules.
These diagnoses provide me the necessary key to read my customized wellness map. Understanding the basis for my signs and symptoms has helped me modify my lifestyle path from point to point, including the following: stress management plan, diet plan, medical management plan, career plan, financial plan, family plan etc.

A Journal: to help you through your journey

My journal is my journey’s record. I chose to explore my feelings, document my happenings and paint my visions of life’s journey. I choose to journal. I choose to record my journeys. I choose to learn from my experiences.

My “life lens” is becoming clearer as I age, while my actual vision declines.

Compass: perspective, attitude, moral direction

At times the journey of life can be compared to climbing Mt. Everest in a pair of summer flip-flops. Then at other times life can be as calming as an evening walk on the beach. Intermittent mental-emotional compass recalibrations are necessary to navigate through life’s rough terrain.

In Summary

I hope the story of my journey is helpful!

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