Primary Penny

By Maggie McCarey

                                                Doctor: KNOCK! KNOCK!

                                                Patient: WHOSE THERE?

                                                Doctor: HEPA

                                                Patient:  HEPA WHO?

                                                Doctor: Sorry, I can’t tell you.

                                                PATIENT: But I can.

A VERBATIM with MY PRIMARY June 12, 2013

(A VERBATIM IN PSYCHOLOGY IS A CLOSELY APPROXIMATED CONVERSATION WITH A CLIENT AS WORD-FOR-WORD AS YOU CAN REMEMBER IT.)

HERE GOES

Primary Penny:  Hi Maggie. It must be a year later.

Maggie:  Really? Seems only a few days ago. How ar……..

Primary Penny:  Let’s see. You don’t do weight. Did we get a blood pressure?

Maggie: No becau…

Primary Penny:  Why not?

Maggie: Remember three years ago my blood pressure goes 180/over OMG when I am here.  You wanted me to go on blood pressure medicine and I agreed to if you gave me three weeks to monitor my own blood pressure.  We made sure my machine was correct by calibrating it to your office machine and three weeks of digitally recorded information showed that I have a normal blood pressure rate in a non-flight or fight situation.

Primary Penny: Well, that was then and this is now.

Maggie: Right. It is still normal.

Primary Penny:  And how do you know that?

Maggie:  Ummm.  I take it at home?  I have brought you a list of blood tests that I would like you to test if you…….

Primary Penny: Squaaaaawk!!!!!!!Why would we do that since there is no cure for a,,,a,,,you know…your disease?

Maggie:  There is no cure but there are many people with l-i-p-e-d-e-m-a who work with their doctors because collectively we have learned a-l-o-t the last few years.  Every year you take tests that give me very little information that I need…

Primary Penny: Like what^^&&^%^%?!!!!???

Maggie: Like cholesterol.

Primary Penny:  YOU DON’T THINK CHOLESTEROL IS IMPORTANT????

Maggie:  Of course, I do.  But every year it has been well within the normal range, which doesn't fit with any of your beliefs about being overweight.  You don’t explore that contradiction.  I am not dying from high cholesterol at the moment.  I am dying from lipedema.  Every year. I come here and you spend all of your time and my money ruling out cancer and high blood pressure.  If I had diabetes you would test my blood sugar and a lot more.  We would have an entire conversation about my diabetes.  Now I am bringing you four blood tests so that we can have a conversation about lipedema.

Primary Penny:  FINE! (Like a kid who just got a list of chores.)  What is the first one?

Maggie: The first one is the C-reactive protein to measure my inflammation level?

Primary Penny?  And what good is it going to do for you to know that?

Maggie:  Us.  It will help us to measure inflammation in my body with a base line.  You know how every other disease is determined to be under control.

Primary Penny:  So if inflammation is high, what can I do about it???

Maggie:  You can recommend an anti-inflammatory diet and you could give me a list of foods that are alkaline.  You can tell me  to measure my ph balance regularly, not unlike a glucose reading for a diabetic, and then you could take the blood test again to see if we are reducing the inflammation in my body.  You already prescribed Wellbutrin, which are anti-inflammatory as well as an anti-depressant. Herbs work well against inflammation.  You could tell me to go to Starbucks and buy Trite Green Teas.

Primary Penny: Okay, what are the other three?  I told her the other three. I just can’t order these tests for you.  Your insurance company won’t pay for them without a reason and since they don’t know about lip..lipedema….

Maggie:  But isn't it your job to run tests based on my symptoms?  Don’t you need to hear my symptoms?  Those tests rule out something?  They are created to measure something, right?  What about this one?

Primary Penny:  I would use that test to measure hypoglycemia. 

Maggie:  I have periods where my sugar drops.  If I don’t eat I can go to a point of no return with a pounding headache.  I have always wondered if I have hypoglycemia.

Primary Penny:  Well it might not be low blood sugar.  That could be a lot of other things.

Maggie:  Well, there you go.  Test me.  Rule out possible illnesses based on my symptoms.

Primary Penny: (getting into it).  It also tests myalgia….

Maggie: MYALGIA…OMG! I have fibromyalgia. It is in your notes.  Yes, test this for me…

Primary Penny:  Yes these are tests I can absolutely test you for….Tell me what herbs you use to bring down inflammation.  She wrote them in my official records.  SAWEET!

                                        AND THERE YA’ GO

She wheeled me out of her office down two hallways to the receptionist desk.  I really do like her BECAUSE she can and does listen.  She NEVER once has looked at her watch when I see her. And, best of all, I don’t think she is put off by fat.  No wait.  That’s second best of all. She studied enough information to diagnose me with lymphedema and lipedema.  I like that best about her. (YOUR PRIMARY CAN GIVE YOU A DIAGNOSIS).

Maggie: See ya' next year!  I waved at the door.

Primary Penny:  Oh no. I will see you when the blood test results come back.  She smiled, in charge.

Maggie:  Yes ma’m.  (progress)

Oral History, Medical Research and Grassroots Participation in Finding a Cure for Lipedema

by Maggie McCarey

When we fall into lipedema hell where signs on the wall say “do not expect a solution, do not expect a cure, and do not try to escape,” we immediately need a crash course in lipedema vernacular.  Unfortunately, because the medical profession signed off on us as incurable before one clinical trial was completed (and if you don’t count individual case studies, one has yet to begin), we depend, share, and believe in a knowledge base riddled with assumptions. We do not even know what lipedema means before we join forums where the only real advice we receive comes from shared information collected via articles written by doctors synthesizing other articles that evolved also from even earlier articles. We then share this blend of experience and information orally among forum members as if it were the truth, and we pass it on as truth as well. In this way, we who have discovered lipedema perpetuate the bad medicine that keeps us from finding solutions.

     While I am not an expert in the medical field, I am a college professor who taught research and I am an expert on oral tradition, fact, inference and opinion. That women on forums learn to parrot information about lipedema without questioning its scientific basis or logical reasoning is a fact. Consequently, our forums are often unwitting promoters of a belief system based on oral tradition rather than a factual foundation upon which to build a cure. Sadly, as with all belief systems, leaders emerge to keep the fixed system up and running to the determent of visionaries who threaten change or, in our case, cures, if the leaders cannot retain control. Groupthink always creates leaders who hand pick their team members. The leaders’ job is to destabilize the creative process in order to maintain a specific belief in a closed system.  This is survival of the fittest. Conquerors win and the conquered either assimilate or are driven away.  It is the way of history. It is the way of groups. It is the way of all worthwhile struggles that aim to serve humanity with purity of motive.

     Proper medical research is very specific in its components and has nothing to do with power or entrenchment.  It is always evolving as information brings the possibility of a  hypotheses or idea to grow the science of a disease.  The logic of the medical research article also defines the necessary components of research:

As do all forms of science, medical theories have a factual as well as a logical basis. New information is presented in medical research articles. These papers have three separate arguments: the argument of the hypothesis, the argument of the experimental protocol, and the argument of the hypothesis's judgment. These arguments may be examples of the hypothetico-deductive or confirmational model of scientific interference. The logical form of these arguments is informal and inductive rather than formal and deductive. Understanding the nature of the logic of the medical research article may help avoid erroneous conclusions.

(Velanovich, L. www.ncbi.nlm.nih.gov/pubmed/8259532‎

      So far, lipedema research is a two-legged stool trying to strike a theoretical balance without a third leg - the argument of the experimental protocol (laboratory research).  Without the experimental protocol, researchers have no means of self-correcting or making progress towards a cure.  Every doctor I read, unfortunately, has looked at lipedema and hypothesized astraddle the two-legged stool of incurable. This hypothetical judgment, the third argument of medical reasoning, is reached without empirical research and has been passed from one medical generation to the next based primarily on case studies that confused and interposed Dercum’s disease (1892) and lipedema for half a century before Allen and Hines differentiated lipedema from Dercum’s disease in 1941 and that conclusion determined by one patient history.  The medical community has thus had 211 years littered with relentless misogyny to come up with something besides fat to describe lipedema. “Do not expect a solution, do not expect a cure, and do not try to escape.”

     Before we take their collective lack of interest personally I would remind you of the history of the hysterectomy.

            Vaginal hysterectomy dates back to ancient times. The procedure was performed by Soranus of Ephesus 120 years after the birth of Christ, and the many reports of its use in the middle ages were nearly always for the extirpation of an inverted uterus and the patients rarely survived. The early hysterectomies were fraught with hazard and the patients usually died of haemorrhage, peritonitis, and exhaustion. Early procedures were performed without anaesthesia with a mortality of about 70%, mainly due to sepsis from leaving a long ligature to encourage the drainage of pus. Thomas Keith from Scotland realized the danger of this practice and merely cauterized the cervical stump and allowed it to fall internally, thereby bringing the mortality down to about 8%. (C Hutton.  Hysterectomy: A Historical Perspective. www.ncbi.nlm.nih.gov/pubmed/915593300)

Truly, lipedema is in its infancy.  We are at the start of our campaign and most of us will not reach the land of itty-bitty skirts and knee high boots in this lifetime.  Our place in the history of lipedema is likely to be judged on how well we engage the medical community in our struggle, not on how well we harangue doctors to produce immediate solutions they don’t have.  Rather, this first generation will be known for its success or failure by its ability to create a sisterhood with one unified goal: a lipedema cure.  No leaders.  No followers. No ego. No names but one. YANA.

    George Milbery Gould (1848-1922) was a physician, lexicographer, and  the first president of the Association of Medical Librarians (now the Medical Library Association.  In 1903, he addressed the issue of medical discoveries. He wrote in the preface of an abstract titled Medical Discoveries by the Non-Medical:

I have been struck by the fact that the majority of great medical discoveries, truths and instruments, have not been made completely and suddenly, but have been led up to by preliminary and progressive steps, and that the layman has so often made these discoveries prior to the medical practitioner. This great medical truth is, indeed, but an illustration of the general law that all professional progress, in whatever branch of study, is somehow or other a result of stimulus from without. There is so much interest, and there are so many lessons to be drawn from such observations in medical history, that I have in late years kept minutes of this class of truths, from which I make the following selections.

                                                                (Journal of American Medical Association. 903;XL(22):1477-                                                                                                             1487. doi:10.1001/jama.1903.92490220001001)

And what example might Gould been thinking of? How about 18th-century poet, chemist and inventor Humphry Davy who was also an alcoholic and drug addict?  One day Davy found himself with a raging toothache. He sucked on a little nitrous and his tooth pain went away.  At the end of his paper Researches, Chemical and Philosophical; Chiefly Concerning Nitrous Oxide, Davy offered one line suggesting the gas could be used for painless surgeries.  At that time doctors believed that pain aided the healing process.  Forty years later, some medical researcher tried Davy’s solution and the rest was……well, you know…history.  Tally-ho