From Pathways to Care Plans Again

A nurse friend just informed me that JACHO  (Joint Commission on Accreditation of Healthcare Organizations)  is now frowning upon Critical Pathways being used as plans of care for in- hospital patients.

They want Nursing Care Plans used........AGAIN!

Huh, seems to me I remember searching out Critical Pathways on the internet years ago because JACHO insisted they were necessary for proper care of the patients....we had to change over from all the nursing care plans several of us had worked on for years since care plans for pediatric patients were very difficult to find.

Fortunately my friend did not throw the old care plans away, she is now many steps ahead of others on this one.  I guess if you live long enough you will see these cycles as the new people entering the profession think they have come up with some novel idea!

IMHO the care plans offered individualized care of the patient and the "pathways" offered cookie cutter care of a disease no matter who the patient was.

Now we are heading to "guidelines" becoming more important in everyone's healthcare .  Why is JACHO bucking the trend? Could it possibly be they see how ineffective the "pathways" were?

Let nurses be nurses, let physicians be physicians, let each patient get the care they require based on their individual needs and not some predetermined disease "guideline" or "pathway" or "algorithm".

That's the way it used to be and care was much better then.  Nurses had to think about what care was needed for each patient and not try to fit them into some predetermined disease treatment plan.

 Unfortunately with the plans for healthcare that are out there now we are heading more toward the "cookie cutter" care that has proven to be ineffective and sometimes dangerous.

Right Path, Wrong Path?

Had Lyme Doc appt a week ago.  Don't think he and I are on the same page concerning treatment.

I mentioned the frequent swelling I get which seems to be angioedema, I had a mild episode while driving down for the appointment, upper lip swelled, felt like something caught in my throat and then coughed and coughed until everything cleared up in about an hour.  I had done nothing to cause this.

I do not panic with these episodes anymore, they don't last too long when there is no drug or food I have taken to cause it, as was the case that morning.  More than likely hormone related so I tried to drive that point home with the Doc.

He listened and then recommended we do a mercury test, take DMSA and collect urine for 6 hrs to see how much is excreted.

I had the RBC mercury level done 20 yrs ago and again last year, no problem found.

I do have the old fashioned fillings, lots of them, in the molars, unfortunately.  But my dentist, who is very aware of my chemical problems, has tried three times to refill a tooth and each time I ended up with a root canal because the pulp and root got irritated and then infected.  Another root canal was done for a broken tooth, crown was put on THEN an abscess developed requiring drilling a hole in my brand new (expensive) crown.

There is much controversy about mercury amalgam fillings.  My gut is telling me leave well enough alone.  Any dental work throws off my allergies, possibly the angioedema again.

So I told the Doc flat out I was not open to any dental work, nor would I do any IV chelation.
My luck is things would be leeched out from one site only to deposit somewhere else and cause me more harm.  I do not need more harm.

I will be doing another menstrual mapping test, last was 1 year ago.  He wants to see ( and I agree)what my own hormones are doing.

 I still think I am having estrogen surges that cause a good deal of my edema.  He didn't seem to be aware of HAE3 so I printed out info and will take it to him.

He didn't think you could have any type of hereditary angioedema with normal complement levels but that is exactly what HAE3 is.  I think that is why I have never tolerated any form of BCP or estrogen and that I swelled bigtime with each pregnancy.  Only reason I even knew to research this is that two different allergists mentioned "hormones" as a possible cause of my angioedema episodes.

Had IV Vit C and glutathione again, three sticks this time, my veins are getting tired.  I left there feeling strongly that at the next appointment I was going to take a time out with the IV but I felt so good the next day, like a big energy boost, that I'm not so sure I'll refuse the IV C/glutathione. We'll see.

I did go on a trip with friends( all nurses) this past weekend.  Tolerated a motel room for two nights, brought HEPA filter and own pillow, my necessary supplements and treatments.  It is difficult to take everything at the appropriate times when not home so missed some things which I allow now. Also don't drink as much water as when at home, for obvious reasons ,so possibly allowed things to build up more than normal.

My body still swells with prolonged activity, my left leg swelled twice its size by the end of the day, the right knee swelled slightly.  I had increased abd. bloat by mid day....used to think the heat brought out all the swelling but it was not hot nor was I sweating.   Still swollen all day yesterday, could feel swelling in the small of my back too.  Water buffalo again! 

So once home, tons of water, upped the detox and put my feet up all day, today a little better but the left knee and top of the foot are painful.

Did have some labs drawn last week and heard nothing yet,
 Vit D, ANA, Sed Rate, TSH, thyroid antibodies were all I could read from the sheet before it was taken out of my sight.

Holidays are here, next appointment a week before Christmas.  Have to get gifts, not certain putting up a tree, didn't last year.  No cookies this year either, I don't need them.  No one really needs them.
Don't like having to do these home tests in this busy time of year but I guess we need to know what is going on since I am really not progressing any more and actually regressed the past month or so.

My feeling is that we may never have any real answers, my condition is more than Lyme, I have things not well understood by anyone in the medical community and there are no definitive treatments for any of them. 
I have regained some of my life, not happy I have to ration activity but at least I can participate in some activity. 

Sometimes things are best left alone.  There are no guarantees of any improvement and there are chances of worsening. 
Anything I had done in the past that was supposed to fix a problem only made things worse.

I am not willing to go there anymore.

Another Women's Guideline Disputed

Report: Push Back Age of Cervical Cancer Tests - Women's Health - FOXNews.com

Posted using ShareThis

Oh,oh, changing another long standing guideline, and so soon?
 On reading the article I find myself confused.  Cervical cancer rates have fallen by half in the past
 3o yrs due to screening so now we are recommending less frequent screening ?  Those who die from cervical cancer are usually the ones not screened or screened infrequently?

Can someone make sense of this? 

The Guidelines, They Are A'changin

No not for Lyme but for breast cancer screening.  If you have followed the news at all you will find that suddenly there is a complete reversal on the importance of early and yearly mammograms to catch breast cancer early.

Guidelines again.....what are we to believe.  Sorry but I tend to think more on the dark side.

Gee just as we are looking to more government control of healthcare we get guidelines changed suddenly which will save a ton of money.  No one cares about the lives.  People better start paying attention, this is the beginning, and of course the care of women is what is attacked first.

FYI, no oncologists were on the panel, or at least not listed as such making this important recommendation, sound familiar to anyone?


Current members of the Task Force are listed below. They have recognized expertise in prevention, evidence-based medicine, and primary care.


Bruce N. Calonge, M.D., M.P.H. (Chair)
Chief Medical Officer and State Epidemiologist
Colorado Department of Public Health and Environment, Denver, CO

Diana B. Petitti, M.D., M.P.H. (Vice Chair)
Professor of Biomedical Informatics
Fulton School of Engineering
Arizona State University, Tempe, AZ

Susan Curry, Ph.D.
Dean, College of Public Health
Distinguished Professor
University of Iowa, Iowa City, IA

Allen J. Dietrich, M.D.
Professor, Community and Family Medicine
Dartmouth Medical School, Hanover, NH

Thomas G. DeWitt, M.D.

Carl Weihl Professor of Pediatrics
Director of the Division of General and Community Pediatrics
Department of Pediatrics, Children’s Hospital Medical Center, Cincinnati, OH

Kimberly D. Gregory, M.D., M.P.H.
Director, Maternal-Fetal Medicine and Women’s Health Services Research
Cedars-Sinai Medical Center, Los Angeles, CA

David Grossman, M.D., M.P.H.
Medical Director, Preventive Care and Senior Investigator, Center for Health Studies, Group Health Cooperative
Professor of Health Services and Adjunct Professor of Pediatrics
University of Washington, Seattle, WA

George Isham, M.D., M.S.
Medical Director and Chief Health Officer
HealthPartners, Minneapolis, MN

Michael L. LeFevre, M.D., M.S.P.H.
Professor, Department of Family and Community Medicine
University of Missouri School of Medicine, Columbia, MO

Rosanne Leipzig, M.D., Ph.D
Professor, Geriatrics and Adult Development, Medicine, Health Policy
Mount Sinai School of Medicine, New York, NY

Lucy N. Marion, Ph.D., R.N.
Dean and Professor, School of Nursing
Medical College of Georgia, Augusta, GA

Joy Melnikow, M.D., M.P.H.
Professor, Department of Family and Community Medicine
Associate Director, Center for Healthcare Policy and Research
University of California Davis, Sacramento, CA

Bernadette Melnyk, Ph.D., R.N., C.P.N.P./N.P.P.
Dean and Distinguished Foundation Professor in Nursing
College of Nursing & Healthcare Innovation
Arizona State University, Phoenix, AZ

Wanda Nicholson, M.D., M.P.H., M.B.A.
Associate Professor
Johns Hopkins School of Medicine and Bloomberg School of Public Health, Baltimore, MD

J. Sanford (Sandy) Schwartz, M.D.
Leon Hess Professor of Medicine, Health Management, and Economics
University of Pennsylvania School of Medicine and Wharton School, Philadelphia, PA

Timothy Wilt, M.D., M.P.H.
Professor, Department of Medicine, Minneapolis VA Medical Center
University of Minnesota, Minneapolis, MN

What do they have in common? There isn’t a single oncologist among them, at least not as a listed specialty by the USPSTF published roster.

Symptoms Then and Now

Symptoms one year ago to where I am now.  Tried to do this in column style, had it all done in Word but this site offers no way to attach a document or to publish in columns.
So first I will list the THEN symptoms followed by the NOW…more difficult to compare that way unfortunately.

Hair loss, increased breakage
Scalp swelling, sores on scalp, widespread

Blurred vision, floaters,difficulty focusing
rapid deterioration in eyesight, glasses not
always effective, world looked dim

Ears plugged, hollow hearing, sometimes
complete loss of hearing in one ear briefly,
frequent tinnitus, hyperacusis, could not tolerate
any music for even a second

Nose swollen, dry, burned; loss of smell
except for chemical odors, felt like suffocating
at times daily; sores in nose ? from nasal
steroids

Mouth sores, like water blisters; lining
would slough off repeatedly, tongue
inflamed and eroded, no taste
All teeth hurt at times, no dental problems
found.

Throat, sore daily, left tonsil swollen
PND almost constant, swollen glands
“red crescents” on pharyngeal arches

Heart, frequent palpitations, skipped beats, chest tightness, SOB

GI , heartburn, nausea, anorexia,
gas, bloating , indigestion

Musculo-skeletal no muscle tone but
no pain; no strength, fine motor loss,
easy muscle fatigue, floppy

Skin crops of “bumps” sloughing
sometimes bleeding, frequent bruising
without injury, large ecchymotic areas
Dry, rough, poor turgor, pale

Touch could not feel; numb, buzzing
crawling, pins and needles cold extremities,
numbness, poor adjustment to temp changes

Weight loss, extreme

Fatigue, incapacitating
unrelieved by rest
yet couldn’t sleep; extreme
overwhelming anxiety,
unable to focus, read, watch TV
converse……simply existed, not living

Mood totally flat, couldn’t cry ,
all energy directed to making it
through a day, hours seemed long
felt barely making it at times.
Felt mind detached from body

Allergies and Chemical Sensitivities
Out of control, kept developing new
ones, started reacting to everything,
became housebound

NOW
Hair Loss Much improved, filled in, was possibly from iron deficiency, levels corrected now

Scalp  few sores,seem to occur in cycles; swelling on occ. esp. at base of skull


Vision, improved, can see TV without glasses except when fatigued; “dimness” gone, floaters less

Ears clear, rare tinnitus, LOVE music, still Rock.Still sensitive to loud TV or water running sometimes, usually when other Sx flare

Nose mostly clear since Nov. 08, occ episodes of mild stuffiness. Smell slowly returned starting Oct 08. Some problems return with flares, not as severe. Suffocation feeling still occurs briefly less frequent , not daily.

Mouth rare water blister or sloughing, taste returned

Tongue healed, occ increased teeth sensitivity

Throat minor sore throat if overtired. Tonsils normal, glands normal, constant PND gone, some recurs with seasonal allergies, can control with Rx from LLMD.  Red crescents gone

Heart, Rare palpitations

GI , cyclic bloating, rare nausea, great appetite, digestion normal, no heartburn or indigestion

Musculo-skeletal  Improved tone but increased pain with treatment.  Migrating joint, muscle, tendon pain. Inflammatory pain, increased with repetitive motion. Lost penmanship, still fine motor loss, sometimes joints/tendons loose, sometimes tight. Easy injury to joints, muscles, tendons with normal activity.  Improved strength but not normal.

Skin Bruising stopped, still get a rare “bump” , no crops  Good moisture, turgor, color, texture,  “bumps” seem cyclic in nature

Touch Can feel being touched but often hurts. Continue with episodes of buzzing, numbness    Do not tolerate temp changes well.

Weight Slowly gained, now gaining more quickly and unable to stabilize or lose, too far in opposite direction

Fatigue Still easy fatigue but can ration energy to avoid incapacitating fatigue. Need frequent rest.  Sleep improved, some bad nights weekly.

Anxiety gone as long as take Progesterone.

Participating in life again, can hold conversation although have trouble with word retrieval, proper expression. Cannot multi-task, easily distracted.

If become fatigued or miss sleep symptoms magnify disproportionately, need time to recover. Still unable to determine correct activity level
Some days better than others but have some connection to life most days

Mood Varied moods, get weepy and cannot cope if tired, stressed. Able to find things of interest.  Time seems normal, feel inside myself now.  Very difficult to explain emotions, variable now.
Still seem to be hormonally related, not yet menopausal, but very erratic
Some days feel have it all together, others NOT

Allergies and Chemical Sensitivities Improved but not gone, back to level before 2007. Have to be aware of exposures but can control if careful with diet and environment.  If pay attention and treat early can pull out of trouble fairly quickly.

I’m sure I missed something, still have endocrine and metabolic issues, problems with fluid balance. Autonomic Nervous System dysfunction present, BP can vary greatly, balance can be off then normal again.
Have avoided any serious illness since May/June 2009.

Vitamin D deficiency won’t easily correct.

 Wearing an ankle support now for unrelenting pain top of left foot. Left knee always swollen, just to different degrees.

Back pain comes and goes, seems to get relieved right after a period. No day is a perfect day yet.

At Age 22 Are You Virtually a Child?

Another relative posted “anonymously” on my “For the Disbelievers Lurking Out There” entry.

I am tired of having people who do not know me try to tell me how wrong I have been in my life.  The statement was made that in 1975 when I became estranged from my family I was “virtually a child”. 

Well some people are a child then and some are still children at 50 plus but I was forced to grow up early.

Back in the 70s medicine was different.  I saw things that many will never see in their lifetime starting with training at a State Mental Hospital, as close to the old snake pits as you will ever get.  You grow up fast.

Then after graduation I was put on a Medical Surgical Unit on the 3-11 shift that in those days took everything.  There were no specialized Burn, Stroke, Cancer, Surgical or Step Down units.  There were no DNRs, if a patient was elderly and the doctor and family felt they were failing for whatever reason, you let them die, sometimes it was quick, sometimes very slow.  You gave supportive care to them and the family and they died.  In my first year twelve patients died in the week between Christmas and New Years on my shift.  Everyone’s condition always got worse on  3-11, you grow up fast.

I was pinned to a wall by a wife whose husband had died while she  left for a brief time.  She tried to blame me, said she was told he wouldn’t be dying so soon.  I was 100 lbs and 5’1 3/4”, she was much bigger than me, an attendant pulled her away from me, I responded by consoling her, she was blaming herself for leaving, I had nothing to do with her anger…..you grow up fast.

I had a nursing student who was a year behind me in school come in with Acute Leukemia and die on my shift in front of my eyes, her head swelled and she bled from her eyes and nose, I had to keep it all in and deal with the family and visitors…..you grow up fast.

A great Charge Nurse who worked on the day shift was diagnosed with Breast Cancer, was on our floor for her diagnosis, surgeries and again when the cancer spread and she was dying.  All she could think of was her daughter and her wanting another child….she died on my shift…..you grow up fast.

Ford Pintos were notorious for bursting into flame if rear ended, we had one of the victims on my floor. She required a bath twice a day, she was on reverse isolation, you had to completely gown up and get in the tub room, you had to vigorously scrub the burned areas with a brush they use to wash up before surgery, you sweat like crazy from the outfit and the steam….no amount of pain med could control her pain, she would cry and scream throughout the procedure….you had to convince her,yourself and anyone else hearing her scream that you were really helping her….you grow up fast.

Nurses do empty bedpans, contrary to popular belief, pack wounds so deep you can easily lose your hand in them.  Deal with smells from colostomies, vomit, diarrhea,coffee ground emesis, infections….it isn’t pleasant but you deal and you grow up fast.

You deal with physicians who yell at you on the phone for bothering them, throw charts, throw insults, throw scissors, bandages, whatever is in reach, wrap you in a phone cord while arguing with someone else on the phone….you take it all, you tactfully stand up for yourself if indicated but you do not yell back, you grow up fast.

You stand up to the Director of Nursing, whose friend just came back from surgery and upon moving from stretcher to bed complained of pain but fell back asleep once settled…her VS are not high enough for a pain medication just yet but the Director of Nursing is insisting you give it….I refused, she was furious at me, but later when the VS fell even further WITHOUT medication she told me I was right and thanked me… at the same time I was dealing with recurring hives from a penicillin reaction  but had to ignore them because they had lasted over a month and I had to work while still breaking out(a taste of things to come unfortunately)…you grow up fast.

You hear screams of “Fire, Fire” from somewhere down the hall, you trot down the hallway and see an elderly man perched on the windowsill, his Foley catheter stretched beyond where it should be from the opposite side of the bed and you laugh thinking “man, whoever put that catheter in must have really blown up that balloon”…..it could have pulled out, caused bleeding…this was a minor problem….you grow up fast.

I gained the respect of the physicians many could never get any respect from, they trusted me, trusted my judgment early on yet I would return to my parents home to find my things had been gone through, they were looking in my checkbook, they didn’t like the book I had chosen to read.  Or I would plan to go to a movie downtown with a friend and wasn’t “allowed” because it was near a theater where “men” would be seeing a different type of movie and I wasn’t safe there.

At work I was an adult, at home forever a child.  They knew nothing of what I did for a living, never asked, didn’t want to know.

For stress relief I had to look to others.  No one could go right to sleep after some of the shifts I experienced….so I would stay up for a while and try to watch TV quietly, but the house was tiny and it “bothered” them.

I slept late in the morning because I usually didn’t get home till at least midnight and couldn’t go right to bed..they felt it was avoidance and I should get up earlier OR I should work the day shift.
So then I would go out with friends after my shift; breakfast, a bar, with my friends who were nurses we could discuss all the stuff we experienced while eating or drinking where non nurses would throw up or be appalled at what was being discussed. 

But then I was staying out too late,  I couldn’t win, I was one big bother until the night I came home after work to find my things on the front step and my father inside stating “your mother wants you to leave, I will help you find an apartment tomorrow".

Now where the heck was I supposed to go after midnight?  You grow up fast.

I grew a pair and left, went to a friend’s house whose parents welcomed me with open arms and without question.  I should have stayed there but in my effort to try to “please” I instead went to a relative’s house where I thought I might get assistance in someone standing up for me.  Well not to be.  They listened in on conversations with my future husband, there were some disagreements because with all this drama he wasn’t so sure he wanted to go through with the wedding at all.  His mother was also trying to take everything over….I didn’t have the strength to fight her too.  I was bewildered by all that had already happened, as far as I was concerned I would have rather given up the big wedding and eloped but future MIL wasn’t going to allow that.  I was stressed, put in horrible situations and having people I put my trust in stab me in the back down the road.

I ended up in an apartment before the wedding like I should have done upon graduation from nursing school but I was told by others that “no self respecting female gets an apartment alone”.   Old fashioned thinking back then but it was the thinking of the majority believe it or not.

At age 17 on entering Nursing School I was a child,  by age 22, the year I was kicked out, I was an adult but my “family” refused to treat me as such.  That’s the way it is period, and I will not take the blame for that….. I did grow up.

Another Article Supporting Us

Living with Lyme


By Dr. Jon Sterngold/Special for The Willits News

What are the symptoms of late-stage Lyme disease complex? I use the term ‘complex’ because the spectrum of symptoms are most often caused by the Lyme germ, Borrelia burgdorferi, and other co-infecting pathogenic organisms the ticks carry and transmit. With names such as Babesia, Bartonella, Mycoplasma, and Anaplasma, these pathogens can dramatically contribute to the degree of disease and complexity of diagnosis and treatment in infected individuals. So, as the immune system loses control of these bugs, they spread and cause inflammation, as well as release toxic molecules that cause symptoms and injury to cells and organs.


With so many different possible combinations of infecting organisms and degrees of immune system compromise, the list of potential symptoms is very long. While one person might just have waxing and waning joint pains, another could be totally disabled with neuropathies that interfere with the ability to walk or even to stand. Some become blind from blood clots in the eyes and some are so fatigued that getting out of bed each day might not be possible. Many are plagued with the dreaded “brain fog” and some develop what appear to be well-known psychiatric diseases, such as bipolar disorder and severe depression. But, these patients need antibiotic treatment as much or more than anti-depressants and other psych meds.


Many patients develop severe pain syndromes involving the back and legs, though involvement can be anywhere in the body. Some patients lose intellectual ability, hearing, the ability to sense heat from cold, and coordinated movements. Most develop insomnia, and many get disabling pain in their feet. Fevers, chills, sweats, dry cough, and body aches can make it seem that some sort of “chronic flu” is going on.

Lyme disease can cause life-threatening cardiac abnormalities. And the list goes on.


Some patients have only several symptoms and some have scores. It is no wonder non-Lyme literate physicians either roll their eyes at the prospect of taking care of a Lyme patient or simply refuse to believe this constellation of symptoms is an active and treatable infectious disease. It is so much easier to believe these patients have psychiatric disease (”it’s all in your head”-type illness) or suffer the aches and pains of aging and a low pain threshold (whiners). It makes the doctor’s life so much easier. Just say no. And believe me, as I said before, I would not relish the notion of taking care of a patient with as complex a disease as my own.


And it’s not even that simple. We now know that in addition to the major germ types listed above, there are dozens to hundreds of genetic variations of these organisms. This introduces a mind-boggling level of diagnostic complexity. Physicians faced with a bad disease, and complex long-term, sometimes dangerous treatment, need as much diagnostic data as possible to justify a treatment plan. But testing for these pathogens is almost a lost cause to date.


There are only a few tests for these bugs, and they miss most of the genetic variants. The tests are very meaningful and helpful when positive, but meaningless when negative. We simply cannot “rule out” an infection with a negative test. Physicians who believe otherwise are wrong, if not downright negligent.

But wait, there’s more!

It’s not just the bugs that determine our illness. Our unique immune system genetics and dysfunction play a large part creating the spectrum of symptoms we develop. It has been found that some genetic types tend to develop more severe disease than others, including subtypes that cannot get well. Some are more prone to creating antibodies that make us ill by attacking our own tissue and some have impaired ability to break down and excrete bacterial toxins. These are some of the reasons that one person’s Lyme disease doesn’t look another’s and why we need Lyme experts to manage sick patients.



ABOUT THE AUTHOR: Jon Sterngold, MD, is a Willits resident and physician