Maggie has left the building

By Tatjana van der Krabben

In 2013 co-writer and co-blogger Maggie McCarey and I finally met in person. We only got to spend a day and a half together, but we seemingly manipulated time and made at least a week’s worth of memories. She taught me about the rich history of both the Stockade Historic District, Schenectady, NY and her precious mountains where she had a lovely little house, introduced me to her family, gave me a tour around Amish country and introduced me to an Amish friend, and we even found time to relax on a bench on the banks of the Mohawk River, while looking out for otters. In the meantime ideas were flying around and we discussed the potential of a clinic specialized in treating lipedema that someone suggested to set up with us. Just like that.

That is how I will remember her: a warm personality, a big heart, a creative mind, unafraid of dreaming, embracing life. Mindful of the past, the present and the future.

LIPESE was Maggie’s brain child. The lipedema handbook, the blog, the Facebook support group: she was the driving force behind our every effort. She counseled countless people behind the scenes, advocated for several men with suspected lipedema who have an even harder time obtaining diagnosis and adequate help. But one facet of her versatile legacy can be found in her brutally honest and detailed blog posts in which she shared a wealth of knowledge and experience regarding her journey with lipedema.

Maggie, it has been an honor being your friend and working with you. You will be missed.

Maggie has passed on peacefully, but all too soon, on July 30, 2018.

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

Cortisol and Estrogen Connection in Lipedema Recovery - Part II

by Maggie McCarey

Sorry, for taking so much time to write part 2 of cortisol and estrogen connection.  Studying it was like learning a new language (which is ironic since my life depends on knowing speaking it to my primary). After reading about cortisol and estrogen until my eyes crossed, I came across one doctor, Alfred J. Plechner, who brings the adrenal gland into our estrogen discussion and oddly makes the discussion understandable.  He writes:

I have long regarded adrenal dysfunction as a well-spring of excess estrogen which may contribute to hormonal imbalances, immune destabilization, and increased vulnerability to disease. As a practicing clinician, I have consistently found elevated total estrogen as part of an endocrine-immune derangement present in many common diseases of dogs and cats.

     

Wait.  What?  Dogs and Cats?  Yes, Alfred J. Plechner is a veterinarian, but before I discuss Dr Plechner’s findings, I want to share why I am so interested in this topic.

      

I am looking for 1) why lipedema spikes during female reproductive stages;  2) how to stop lipedema in its tracks during these reproductive events; and 3) how to stop my ever-present hormonal surges, sore breasts, occasional bleeding, premenstrual crampiness, and peaking emotions since post-menopause 8 years ago.  (Yes, I have had the traditional medical tests designed to detect cancer but otherwise do not address serious medical issues)

Like many of you, one or more hormonal events triggered a lipedema spike in my body. Mine: huge weight gain at menses and at the birth of my first child, a boy.  Then weight loss when my daughter was born and during peri-menopause.  A weight gain, all-time high at menopause with a new addition of much immovable weight gain in my stomach which had been no more than a pouch.  And now, post-menopause, no more weight gain, as I have lost slowly and steadily for the last three years but with much unexpected hormonal activity even though my reproductive stages have supposedly ended.

     

Because women are finally sharing their collective history of post-menopause with such consistency, a new understanding of menopause is being forged and a new phase, perhaps, will be named.  Oh wait, in my research, I discovered there is such a name. Are you properly strapped into your ruby red slippers?

After menopause, every woman will be affected differently and they will be at higher risk for breast cancer, cardiovascular disease, fibroids, post-menopause weight gain, urinary incontinence, a thin, watery vaginal discharge tinged with blood signaling vaginal wall atrophy, hair loss, and  osteoporosis.  At the same time ovulation ceases, progesterone drops to zero while estrogen drops 40 - 60% from its pre-menopause level.  In order for the body to be healthy, estrogen and progesterone need to be in balance, and when they are, women are disease-free. This is called post-menopause syndrome.                                   

I just want to repeat the salient sentence in the above paraphrase: 

In order for the body to be healthy, estrogen and progesterone need to be in balance, and when they are, women are disease-free. When the estrogen and progesterone are not in balance, a woman sufferers from post-menopause syndrome. 

Is it possible to ascertain cortisol level in the human body? Yes, with a non-invasive, inexpensive, simple 24-hour urine test and now with hair analysis which tells the history of cortisol in your body.  Is it possible to test one’s progesterone and estrogen levels? Through blood tests, yes, and more accurately, saliva testing is the most accurate test to determine steroid hormones (i.e. progesterone, estrogen, DHEA, cortisol, and testosterone) levels. Saliva testing is much more accurate and useful than any blood test when attempting to determine who needs hormone replacement. (http://www.bhrtdoctors.com/menopause2.htm)  

Why then are the mammogram and pap smear the only yearly tests offered to determining women’s health when inflammation, estrogen, progesterone, cortisol, and testosterone levels can easily and cheaply be measured? And let’s not forget DHEA, a naturally occurring hormone secreted from the adrenal gland to help with weight loss and muscle strengthening.

   

It is important at this point to understand the adrenal gland.  Its purpose is to secrete hormones such as estrogen, progesterone, steroids, cortisol, and cortisone, and chemicals such as adrenalin (epinephrine), norepinephrine, and dopamine. I have often heard that a weak adrenal gland is the root cause of most disease and the good news is that you can test your adrenal function at home.  It is called the paradoxical papillary reflex test.

To take the test:

Standing in front of a mirror in a dark room, take a flashlight and shine the light into one eye at a 45-degree angle from the side. Watch your pupil. When in the dark, your pupil should be dilated (open). When you shine the light it should constrict.  The duration of constriction can indicate adrenal function, though there are other causes for a positive finding on this test. Wait 30 seconds in the dark before repeating with the other eye.

PUPIL CONSTRICTION                                           POSSIBLE FINDING

Stays constricted for at least 20 seconds                    Healthy adrenal function

Fasciculates (pulses) after 10 seconds                        Fair adrenal function

Fasciculates (pulses) in 5-10 seconds                         Poor adrenal function

Immediate pulsation and dilation                               Adrenal exhaustion

www.precisionnutrition.com/what-do-theadrenal-glands-do

And now finally back to Dr. Alfred J. Pletchner who is accredited with applying his research with dogs and cats to something that applies to humans as well: Pletchner’s syndrome.  He explains his findings as follows:

Q. HOW DOES EXCESS ESTROGEN AFFECT MY IMMUNE SYSTEM?

A. Imbalanced CORTISOL allows for the pituitary gland to over-stimulate the production of excess ESTROGEN. This excess estrogen not only causes an inflammation of the lining cells of all arteries in the body, including those arteries to the intestines, but causes the B and T immune cells to become deregulated. It also causes the B cell to reduce its production of antibodies. This in turn causes further turmoil in the gut. When regulated, the B cell protects the body against bacteria and makes protective antibodies to vaccines and other intruders. When the T cell is regulated it protects the body against viruses and plant invaders like yeast and fungi. The hormonal antibody deregulation is why all of these intruders can cause medical effects (illnesses and diseases). Many substances are used to combat these EFFECTS, but while this is being done, the CAUSE must also be corrected, otherwise the EFFECTS will continue. The continuous use of antibiotics and anti-yeast and fungal medications alone will not correct the problem since they can only be managed effectively through replacement and correction of the hormonal antibody imbalance.

(http://drplechner.com/learn/plechner-syndrome/)

So, first things first.  Take your home test or go to your doctor and ask for all of the tests that are available to you so you can know exactly what your adrenal gland needs.  It’s a very important thing to do because before considering any medication aimed at hormone replacement you should know adrenal function, blood sugar balance, and gastrointestinal function.  Understanding the state of your adrenal gland seems to be one of the most important pieces of information you and your primary can have, especially if you are about to enter a hormonal reproductive event that can be monitored via hormone balance.

Relationship between cortisol and estrogen, part I
Relationship between cortisol and estrogen, part III

Relationship Between Cortisol and Estrogen - Part 1

By Maggie McCarey

 Last Saturday, I watched Les Miserables. I enjoyed the movie, felt the characters’ pain, grieved their deaths, but I wasn't a wet mess of tears at the satisfying shmultzy end of the movie.  Just a few days earlier, I was so emotional, I blubbered over a Carnival Cruise Triumph news report. At that time, my left ankle had begun to swell and fill with inflammation, a sure sign that my body was on the verge of a “lipedema break out.”  But why? I had not been sleeping well and I was experiencing a lot of intense emotions. I needed to find out fast.

 
For some time, two question marks have been bobbing up and down in my brain:  cortisol and estrogen.  I know that cortisol is triggered by stress, one of the major causes of our lipedema inflammation.  And, anyone who has ever had pre-menstrual “blues” knows that overflowing emotion—stress-- is estrogen driven.  But do cortisol and  estrogen work together?  Are they related to each other?  These questions are the subjects of my research and now this blog.  Were cortisol and stress causing me to be a blubbering diva?

Cortisol, Stress, and Inflammation


Under stressful conditions, cortisol provides the body with glucose by tapping into protein stores via gluconeogenesis in the liver. This energy can help an individual fight or flee a stressor. However, elevated cortisol over the long term consistently produces glucose, leading to increased blood sugar levels. Cortisol functions to reduce inflammation in the body, which is good, but over time, these efforts to reduce inflammation also suppress the immune system. Chronic inflammation, caused by lifestyle factors such as poor diet and stress, helps to keep cortisol levels soaring, wreaking havoc on the immune system in the process. (www.todaysdietitian.com/newarchives/111609p38.shtml)

Translated:  Your adrenal glands are the conveyor belt in the famous I Love Lucy chocolate factory skit, but, rather than chocolates, your factory functions to produce what you need to keep you healthy through both urgent, but momentary, and chronic life-sapping external events. One of its favorite defenses is cortisol, which is produced via cholestrol in the adrenal glands located above your kidneys.  As your body goes through anything from a missed appointment to the death of a loved ones, it calls for cortisol (literally little protein bars stored in the liver).  Obviously, the more chronic your life, the more cortisol you have unleashed until, like Lucy and Ethel shoving chocolates in their mouth, under their hats, and down their fronts, as the conveyor belt speeds faster and faster. Eventually, your adrenal glands burn out but not without a fight. 

Watch Lucy at the Chocolate Factory:  

Our bodies try to store the extra cortisol first. How?

One way to store the extra cortisol is via visceral fat storage. Cortisol can mobilize triglycerides from storage and relocate them to visceral fat cells (those under the muscle, deep in the abdomen). Cortisol also aids adipocytes’ development into mature fat cells. The biochemical process at the cellular level has to do with enzyme control (11-hydroxysteroid dehydrogenase), which converts cortisone to cortisol in the adipose tissue. More of these enzymes in the visceral fat cells may mean greater amounts of cortisol produced at the tissue level, adding insult to injury (since the adrenals are already pumping out cortisol). (www.todaysdietitian.com/newarchives/111609p38.shtml)

Researchers have discovered that cortisol eventually overloads the adrenal glands which work so hard for so long, they eventually produce less active cortisol, and  thus leave the body vulnerable to other hormones like over abundance of estrogen, whose excess is stored forever in the liver.

YIKES, SO WHAT IS ESTROGEN?

What is estrogen? It is primarily a combination of three chemical messengers who travel by body fluid to affect all stages of reproduction, sexual behavior, and female characteristics in both men and women.

Estrogen is an entire class of related hormones that includes estriol, estradiol, and estrone. Estriol is made from the placenta. It’s produced during pregnancy. Estradiol is the primary sex hormone of childbearing women. It is formed from developing ovarian follicles. Estradiol is responsible for female characteristics and sexual functioning. Also, estradiol is important to women's bone health. Estradiol contributes to most gynecologic problems, including endometriosis and fibroids and even female cancers. Estrone is widespread throughout the body. It is the only estrogen present after menopause. (http://women.webmd.com/guide/normal-testosterone-and-estrogen-levels-in-women).

                  THE NEW BUZZ PHRASE:  ESTROGEN DOMINANCE

Dr. Christine Northrup, arguably the world’s leading women’s health advocates, explains estrogen balance and dominance so well, I am just crediting it to her and adding it to this blog.  She explains:

WHAT YOU NEED TO KNOW

The conventional medical mindset is that menopause is an estrogen deficiency disease resulting from ovarian failure. Women have been led to believe that at the slightest symptoms, they should run out and get estrogen replacement. While estrogen levels will decrease during menopause, the truth is, estrogen levels do not fall appreciably until after a woman’s last period. In fact, far more women suffer from the effects of "estrogen dominance" during the transition—that is, they have too much estrogen relative to progesterone. And some women can suffer from the symptoms of estrogen dominance for 10 to 15 years, beginning as early as age 35.

LISTEN TO YOUR BODY

The symptoms listed below, as well as many others, often arise when estrogen over stimulates both the brain and body. All of these symptoms are exacerbated by stress of all kinds. Many women in their thirties and early forties find that they experience moderate to severe symptoms of estrogen dominance as they approach perimenopause.

                            Decreased sex drive

                            Irregular or otherwise abnormal menstrual periods

                            Bloating (water retention)

                            Breast swelling and tenderness

                            Fibrocystic breasts

                            Headaches (especially premenstrually)

                            Mood swings (most often irritability and depression)

                            Weight and/or fat gain (particularly around the abdomen and hips)

                            Cold hands and feet (a symptom of thyroid dysfunction)

                            Hair loss

                            Thyroid dysfunction

                            Sluggish metabolism

                            Foggy thinking, memory loss

                            Fatigue

                            Trouble sleeping/insomnia

                            PMS

Estrogen dominance has also been linked to allergies, autoimmune disorders, breast cancer, uterine cancer, infertility, ovarian cysts, and increased blood clotting, and is also associated with acceleration of the aging process.

WHAT CAUSES THIS

When a woman’s menstrual cycle is normal, estrogen is the dominant hormone for the first two weeks leading up to ovulation. Estrogen is balanced by progesterone during the last two weeks. As a woman enters peri-menopause and begins to experience an ovulatory cycles (that is, cycles where no ovulation occurs), estrogen can often go unopposed, causing symptoms. Skipping ovulation is, however, only one potential factor in estrogen dominance. In industrialized countries such as the United States, there can be many other causes, including:

                            Excess body fat (greater than 28%)

                            Too much stress, resulting in excess amounts of cortisol, insulin, and norepinephrine, which can lead to adrenal exhaustion and can also adversely affect overall hormonal balance

                            A low-fiber diet with excess refined carbohydrates and deficient in nutrients and high quality fats

                            Impaired immune function

                            Environmental agents 

http://www.drnorthrup.com/womenshealth/healthcenter/topic_details.php?topic_id=118

Next: Surprising Research on Estrogen Dominance. Tests at home to determine if your adrenal glands are too fast or to slow.  How I  tested my hypothesis and stopped my estrogen overload with herbs and watched Les Miserables without tears.

Relationship between cortisol and estrogen, part II
Relationship between cortisol and estrogen, part III

You Are Okay, I Am Fat

By Maggie McCarey

YOU ARE OKAY.  I AM FAT

One of these things is not like the others,
One of these things just doesn't belong,
Can you tell which thing is not like the others
 By the time I finish my song?

     Healthy families raise children who love themselves and others as they are loved. Period. Healthy families raise children who believe in their intrinsic and unique importance at home and in society. Always.  Healthy families raise children to believe that they are not divine mistakes. Ever. On the other hand, dysfunctional families produce children who doubt their self-worth, generation after generation.  A dysfunctional family has favorites among its children and roles: martyrs, scapegoats, heroes, and clowns.  A dysfunctional family orbits around a broken and narcissistic individual who disables rational thinking and loving behavior among and between its members.  Dysfunctional families learn destructive coping mechanisms that they bring to the classroom, church, and workplace. 

BELIEVE ME WHEN I SAY:  if you have been born into a dysfunctional family, and you were tortured for your weight, you were not really rejected because you were fat.  You were rejected because your family had to assign you a dysfunction role to preserve itself.  If you weren't rejected because you were fat, you would have been rejected for having ears like Uncle Egor or being too smart, or the youngest, or the oldest, or, or, or....  Being fat just made it easier for them to assign you a role.  Hey, appearances are "everything."  How can you belong to the "perfect" family if your body is  a sign board advertising  cultural imperfection?  The only way to deal with a fat child in a family denying its humanity is to tell him/er and yourself: your fat is your own fault; you are not like us; you are different; you don't belong.

I worked several years on a psychiatric unit where a sick family  was often evident in our patients.  In fact, in family therapy. we call the patient, our IP: (identified patient) because we know s/he simply sounds the alarm for a family that is about to implode.  Seldom is the real patient hospitalized.  For example, I was responsible for taking family history with each new patient.  I remember one teenager; promiscuous, drug and alcohol addicted; belligerent at school and violent at home.  I asked her perfectly groomed and sweetly smiling mother when she first began to see behavioral changes in her daughter.  The mother replied: "when she was 9 months old."  I looked up from my notes.  The mother clinched her jaw and said: I walked into her room after her nap.  She had poop on her fingers from her diaper and I knew right then and there, that this girl was trouble!"  Her rage was so kindled, the event could have occurred the day before.  And, fifteen years later, acting upon that truth, her daughter was on a psychiatric unit, the IP of a very disturbed family.  The girl's role had been assigned at nine months old.  Your Name Shall Be Called Trouble.  I probably don't need to add that while the girl was on our unit, she was fun, intelligent, wise beyond her years, starving for love, and broken beyond our meds and psychological support to fix.

As we prepared for our January Challenge, we did our usual thing. We did a searching moral inventory of our bad eating habits. We planned deprivation or elimination.  We picked a diet of the decade or the month.   I hope that we also  planned for a different reason than we have in the past. And a different path.  No calorie counting.  No being hungry.  No weighing every day.  I hope we planned to lose weight or maintain our weight because lipedema demands that of us, and not with the idea, that we will lose enough weight to "belong."  We did everything except, perhaps, the one thing we needed to do in order to succeed: bind our wounds with the balm of truth.

One of the greatest selp-help book ever conceived was I'm Okay, You're Okay.  I haven't thought of it for years but someone mentioned it a few weeks ago and at my age I finally got it.  Brilliant! Still being sold.  Keep It Simple Silly, author Dr. Thomas A. Harris suggests that three-quarters of adults live with the belief: "You're Okay.  I am Not." That's a lot of poopy! A lot of family dysfunction. A lot of cultural erosion. Its hard to argue against Harris' number with almost every aspect of just society unraveling in every corner of the world. 

The point? I think many of us who have spent all or most of our lives as fat people in a thin world are acutely aware that we are not okay.  In fact, we could add one more distinction to Harris' book which pretty much sums us up:  You are okay. I am fat.  Until we get to the place where we are okay with ourselves... Okay... Loved...  Cherished...  Able to love ourselves when others cannot because they need our imperfect bodies to hide their imperfections, we will not be okay. It won't matter how many times we lose weight or how much we lose because fat is really not our issue.  BELONGING is our issue and I bet most of you have found a way to belong; you just haven't found away to accept  belonging to people who think you are more than okay!   We have to begin the real lipedema healing process with the aha that we are okay and we are fat. That is our challenge for the rest of our lives.  And it has become a lot easier for us since we have discovered so many others who are okay and just like us.

Inflammation Flares Part 2

by Maggie McCarey

LIFE CHOICES THAT STOP INFLAMMATORY FLARES

NUMBER ONE

No processed sugar.

Not even.  Nope.  Nada on a regular basis.  Okay, once in a blue moon.

NUMBER TW0

Drink half your weight in ounces of pure water every day

NUMBER THREE

Have a plan and necessary meds or herbs to act quickly.

The good news is that when it first appears like the cavalry, you can’t mistake it for something else.

Learn how to act quickly to reduce inflammation when you experience an inflammatory trigger like a fall or a shock or an insect bite.  Think of all the home remedies and over the counters you know about. My daughter, Catia, swears by a penny taped on a bee sting remedy because it works for her.  Treating my daughter Stef’s no-see-ums poisoned inflamed upper body a few years ago was not so easy and far more urgent.  Most people get a tiny red mark at the site of a bite.  Stef went into full inflammatory flare within an hour. The inflammation spread quickly throughout her left arm, her upper body, even her eyelids. She knew that the inflammation was caused by histamine, a symptom-causing chemical released by her immune system during an allergic reaction and that she needed a strong anti-histamine to subdue her oh so helpful immune system. She took Zyrtec which reduced the swelling, heat, redness, and pain in her arm and the healing process began.  Lipese need a plan.

Herbs in Ointments, Tinctures, Balms and Teas

One of our lipese on a recent forum shared that her legs ached from humidity and too much standing so she massaged arnica cream on them and the pain improved. Why?  Because arnica root is an anti-inflammatory herb. It’s believed that the plant contains derivatives of thymol, which seems to have anti-inflammatory effects. Herbs are often anti-inflammatory.  That’s how they work.  They reduce chronic swelling.

A small list of Anti-inflammatory Herbs

Turmeric, ginger, guggul, neem, boswellin, holy basil, bromelain, aswagandha, blue vervain, butcher’s broom, calendula (marigold), cat's claw, chamomile, fennel, queen of the meadow, skull-cap, buplerium root, dandelion, rutin, and my favorites: Rosemary, Lavender, Lemon Balm, Raspberry Leaf. 

If you ask me, these four herbs should be in every sauce, gluten free cupcake, meat seasoning, and toothpaste ever made.  I have seen rosemary reverse heart and lung issues. I make burns literally disappear with lavender because a burn makes your skin acidic and lavender turns it back to alkaline. I baked rosemary so often on chicken, my grandson once said to me:  How come you always make me eat these sticks on my food?” An herbalist friend told me a week ago: “Every woman on the planet should take raspberry leaf on a permanent basis.” Lemon balm tea can change a horrid, back-cracking monthly into a pain-free event. 

     

All inflammatory diseases are about how we nourish our bodies. The modern world nourishes with chemicals.  Herbs that detox us from chemicals are essential to recovery.  You can cook with herbs, bathe in them, shampoo your hair with them, and drink them in teas.  They come in gels, oils, and balms. You could literally be healing yourself with  herbs that also improve skin tone. And, they are inexpensive.

 NUMBER FOUR 

Drink Tea Daily to Reduce Chronic Inflammation

Green, White, Oolong, Black is the proper order of most to least effective anti-inflammatory tea.

All teas are not the same. White, green, oolong, and black refer to the leaf at time of harvest and the oxidation process of each tea. Pekoe, for example is a white tea because it is harvested with unopened baby buds, slightly sun baked, and lightly oxidized (bruised).  White is the purest of the teas and I believe, based on aging as deterioration, one of the two best to drink. Green tea is exactly what it means.  The tea plant is harvested when the leaves are at their greenest and at the peak of fullness and medicinal strength.  Green tea is generally not oxidized. It is almost always considered the healthiest of teas with Dr. Mercola, a lone dissenting voice, who is concerned with high levels of fluoride present in green tea.

      

Oolong is tea that is picked while the tea is brownish green, placed in the sun for a short time and then oxidized. Darjeeling is perhaps the best-known oolong tea. Oolong and almond tea is one of my favorite teas. Finally, black tea is made from older brown-to-dead leaves and it is most oxidized. English Breakfast is a black tea blend of usually Assam, Ceylon and Kenyan teas. Earl Gray is a black tea with oil of bergamot added.  Rooibos, South African tea, is technically a member of the legume family and extremely high in flavinoids and antioxidants. It is a fabulous anti-inflammatory.  Any tea is better than no tea, but regarding anti-inflammatory properties, white and green are preferred.

     

A caution: If you open up the bag of a tea that is labeled pure, you will find hard wood like dried shards of tea that can be mixed with anything, including weeds along the road.  When the bag sits in hot water, the mixture inside barely swells to half the size of the bag.  It is probably better that you not drink tea at all than to drink this “pure” potpourri of tea and sprayed weeds.  On the other hand, a good organic tea looks like a rolled leaf, and when placed in a tea strainer will swell four times its size.  Its color will be vibrant, its touch moving from soft white to twiggy black.  This is the tea you want to develop a habit of drinking for the rest of your life.

NUMBER FIVE

A good strong cup of brew? Not.

I love my coffee.  I will die drinking coffee like some really old ladies keep smoking.  But I have to be honest. Yes, coffee has the highest level of antioxidants in the universe (for the first 15 minutes after it is brewed), but it has other issues with recognizable words we coffee-lovers don’t want to hear.  Be brave, dear breve misto venti extra light, extra hot, no sugar Starbuck’s gal.  Read on:

           

“The most potent ingredient in it….is caffeine. This compound is -a -known stimulant. Ingesting stimulants, like caffeine, cause an adrenal response in the body. This response increases cortisol which raises blood pressure and heart rate, as well as interferes with other hormone production in the body. People with elevated cortisol levels produce less DHEA, testosterone, estrogen, progesterone and other hormones that give the body balance at both physical and mental levels. Excess cortisol can suppress the immune system as well. “

Cortisol is that hard to lose belly fat. Sigh.  And it hardens our capillaries.  Diddleydang.

            http://renegadehealth.com/blog/2011/01/31/coffee-does-have-antioxidants

NUMBER SIX

 Mother’s Breath

Continually Exercise Your God Gene

When I went through MDL, I had a wonderful therapist who could tell me when my lymphatic system released and drained.  She could not, however, apply any technique to make it happen.  Sometime during the first few sessions, I realized I was gripping the table like a life raft, my teeth clinched and my breath shallow.  As a part of allowing God rather than fear to be present in me, I began to do the Mother’s breath. The moment I started breathing properly, she jumped back and said, “What did you do?  Your lymph system just turned on like a faucet.”

     

This was great confirmation that I was actually changing my body with this ancient breathing technique.  I explained to her that I often breathe a prayer that I learned from the Sufi’s in Alaska.  They believed this to be the perfect God/child of God breathing pattern.  Seven count in.  Pause for one count.  Seven count out.  Pause one count. Seven count in, etc; for several minutes.  With the 7-1-7-1 cycle, I was encouraged to find seven-syllable mantras that I believe.  In Christ all things are made whole, and I am the oneness of God became the two mantras that I choose between.

     

Now in any situation that I attempt to control my external world out of fear, I do the Mother’s Breath. Because people with lipedema often forget how, and, no, it is not caused by a crushing weight on our chests from obesity, we need to be taught to breathe. The Mother’s breath is one that I use for myself and in healing sessions with others.

     

Every MLD session after that, my therapist said, “ Let me try first. Dang. Okay do that breathing thing you do.”  I breathed my mantra and 7 count.  “There goes the faucet,” she would laugh.

     

So often the lipese bear the weight of others who are also ego-damaged and looking for someone to target, or we take things to heart more than others, or we find out early in life being helpful keeps us safe. But after awhile our lives are so stressful that if we then come upon a real life change, or even a common stress, a worried day over a child, or a late credit card payment, bald tires, a missed appointment, etc. The old legs get tight, indicating that we have unconsciously called for help where we hold stress--in our legs.  That feeling of tightness in your legs? Check it out.  If they are suddenly feeling heavy use the Mother’s Breath.  When you do, the lymph system flows, channels open, toxins  release and you are the Oneness of God in the process of being healed.

Inflammation Flares Part 1

by Maggie McCarey

Looking backward, the first lipese woman I remember was a member of my church.  She was very old and quite plump.  She was also expansive, and a NY kinda storyteller.  Every time I visited her she had a new version of the spider bite that changed her life.  Different angles, once even spider as narrator, but the facts of the story never changed.  She was in her mid-40’s.  She woke up one summer dawn with a spider bite on her leg.  From that moment on, she filled up like a balloon, and no matter how little she ate, the weight just never came off.  Now she went by ambulance several times a year to fight off cellulitis from the lymphedema that started in her legs. Sound familiar to any of you?

 

I have a similar story though my trigger was the death of my best friend.  In the months following her death, I gained significant weight while not eating, I got asthma, and developed panic attacks.   Through the last few years, I have heard many such stories, especially around lipedema knee surgeries, death of loved ones, and sometimes even the slightest injury or insect bite.

 

One woman shared with me that she fell off of the lowest step of a stair in a yarn shop.  This woman was a sharp cookie and had been riding the tail of the fat beast for a long time.  She had undergone by-pass, she knew herbs, she tried any and every diet and she was obese, but she never stopped trying.  She had been doing remarkably well as of late until her fall, which did not in anyway hurt her.  Even so, the next morning, the leg she fell on had begun to grow first 1, then 2, then 3inches.  She could watch it grow before her eyes.  Soon her other leg caught up. She went to her primary who did not distinguish inflammation from leg fat.  Unfortunately, the inflammation spigot was turned on and was not likely to turn itself off.

She and I worked for a year to stop what doctors call an inflammatory cascade without success.  Her story and the stories of many of the rest of us lead me to believe that lipedema is an over-active inflammatory response.  That’s why we all have a different story.  I had leg ringlets at puberty, many of your experienced your first flare with your first pregnancy, or a surgery, or birth control pills, an insect bite, a drug, or, if you were lucky, menopause.  Think back to those silent terrifying days when your brain became a monkey house, weight loss became your obsession, and you turned yourself over to the doctor for your first diet.  Our events are different but this symptom we share.  “Weight gains” often follow a hormonal or chemical trigger that you can actually point to.

The following article written by Caroline J. Cederquist, MD is the best and easiest-to-understand explanation of lipedema and inflammation I have read. Try to wade through it because you will be tested on this information the next time your body does an inflammatory reenactment of the Titanic after a nasty fall, when it gets an itsy-bitsy spider bite, or if it decides to punish you for that nice big bowl of spaghetti you ate for dinner. 

Dr. Cederquist writes:

Fatty tissue is made up of adipose cells, which increase in size but not number as more fuel is presented to the body for storage. These cells produce something called cytokines, small, secreted proteins that among other things, produce and regulate immunities and inflammation. And as adipose cells grow larger, they produce more cytokines, leading to more inflammation.

Not only that, but in amongst the fatty adipose cells are other cells called macrophages, which also produce cytokines. There are normally a few macrophages in the fatty tissue of even slim people, but as people become heavier, gradually at first and then at an increasing rate, the proportion of macrophages in fatty tissue increases.

Now, you wouldn't want to be without macrophages-- these are the immune system's first line of defense, patrolling the body for infection and cleaning up after cells as they naturally die off. So you want-- actually, need--a normal number of these little guys distributed throughout your tissues.

But it turns out that in overweight people, most of the inflammation promoting cytokines in fat are coming not from the adipose cells themselves, but from these macrophages!

The clean-up crew

So what is it that attracts the extra macrophages, with their dangerous cargo of inflammatory cytokines, into the fatty tissue to begin with?

Recall that as people become increasingly overweight, they do not grow more adipose cells; the ones they have simply swell to larger and larger size. Inevitably, some of them become so overburdened that they burst open, leak, or just die. It is the resultant mess of cellular waste that the macrophages come rushing in to clean up, after all, that's their job!

But with that clean-up mission, you get all that excess inflammation that they bring, and you know what that means: more heart disease, more arthritis, more diabetes, more asthma. (http://newsblaze.com/story/20051101224906nnnn.nb/topstory.html)

….MORE LIPEDEMA!!!!!

Now I want to bring all of this information to its simplest denominator…YOU.  Inflammatory cascade should be the most terrifying words on your lipedema vocabulary list at all times because that’s how we gain “inflammatory weight” a.k.a., fat legs, a.k.a., leg pain, a.k.a., fat upper arms, a.k.a. wheel-chair hell, etc.

 If I say bee sting, you say epipen.

 If I say peanut allergy, you say anaphylactic shock treatment.

 If I say choking, you say Heimlich maneuver.

 If I say, accidental fall, you say hunh?

I am pulling in the driveway now: You can be the best dieter on the best diet in the world, you can have liposuction, obesity surgeries, and good medical care,  but if your environment throws you an inflammatory curve ball, you better also have:

1) awareness that an inflammatory flare, your greatest enemy, may be imminent you and that it can undo all of the good work you have been doing for your body in a second;

2) a real understanding of what your body refuses to tolerate—Give It What It Wants.  It Will Not Negotiate 

3) a list of common triggers of an inflammatory flare:

4) an emergency plan that goes something like this: If I say fall out of bed, you say______________; and

5) an alarm going off in your head that puts you in mental recovery mode immediately.

The longer you wait, and depending on the chronic abuse your body is already attempting to subdue-----from every environmental, pharmaceutical, emotional, not-sleeping-enough, working too hard, consuming processed, radiated, glop, job stress, grief, unexpressed rage burning inward lifestyle—the more difficult it becomes to stop an inflammatory cascade. Weeks, months, years, …never. 

Understand when cytokines are released: cytokine production can multiply 1000 fold.  So, while that little argument you had with you boss may have been “ah, no big deal…” the clean up crew, Macrophage 4 U, is doing serious clean up in aisle 12, unleashing  inflammation producing cytokines on top of now-hardening inflammation from the last toxic spill.  (After 3 years of reducing inflammation in my ankles and calves, I have successfully found my way to hard, sclerosis like tissue (old inflammation) at the bottom of all that soft inflammation in my legs.) If that hardened inflammation could talk, I would travel back in time, and rewrite my life story one macrophage clean up event at a time.

SO WHAT’S THE PLAN

Tip #1   Keep your body hydrated. Drink lots of water and lots of green tea.  Treat yourself to Starbucks on the way to work and on the way home.  Trenta size. Or, drink 75 to 100 ounces of pure water a day.

Tip #2  The Mother’s Breathing technique whenever you feel anxious, or argue, or spend too much money, or, or, or.  I will share this technique and other tips in part 2.