THE WINTER OF OUR DISCONTENT 2014

by Maggie McCarey

1.  We still have no answers.

2.  We still have no clinical trials.

3.  We still have no specific medical care resulting from research.

I experienced the mother of all cascades this winter with no help or support from the medical community to stop it. No proactive ER team to treat me with dignity and respect as it observed my body in distress. No lipedema specialist to prescribe immediate treatment. Oh, my primary would have happily looked at my legs and then shook her head in bewilderment for $200 plus co-pay but she could not treat me. So, I was as alone again for this potentially life-threatening emergency as I was the first cascade preceding my discovery of lipedema six years ago.  Absolutely nothing has changed in all these years. No medical community advancement. None.

I was on my own from the moment the first purple skin discoloration and twinge of pain covered my back left calf.  The twinge came from a little scratch made by my puppy.  The over-reactive inflammatory response to this scratch came from an immune system on high alert. The perfect storm: a scratch;  auto-immune anemia (the kind people with lupus, rheumatoid arthritis, fibromyalgia and lipedema get); cold weather that brings about chilblains, Raynaulds Disease, and/or cold aggultinin disease (interestingly all caused by the same inflammation-producing vascular irritation of small capillaries in extremities); and my pre-disposition to store toxic chemicals and waste in my adipose cells below the waist. 

A lipedema cascade. Months of frigid temperatures triggered my immune system and, when the cold relentlessly continued,  a horrific cascade filled my lower legs almost to the knee with inflammation.  I could only watch the hot red sludge climb up from my ankles to mid-calf, down to my feet and toes, and then swell my hands. the tissue becoming harder, impacted, more painful, and more resistant to touch every day. Two weeks ago,  my fourth finger on my right hand turned red at the tip and then quickly became blazing hot to my hand.  I went to bed wondering if I would die in my sleep.

 If I had gone to a doctor or to an ER at any one of the moments I have described, I would have been lucky to get a doctor to listen to me long enough to think beyond my fat legs.   And them I would have been prescribed antibiotics that my body would also likely reject.  (Fat legs?  Growing three inches of fat below my knees in days? Fat disorder???? Paleeze.) Every bit of self-knowledge I had about cascade prevention, everything that had worked beautifully for me, small scale, failed. Everything I confidently passed onto you, was swept away this winter of discontent.

I have now stopped the cascade, or rather, re-negotiated with it on an almost daily basis.  Inflammation is at least receding from just below my knees to a hard ban at the top of my calves and half way down to the ankles which are again soft. The feeling of danger is no longer imminent but also gone forever is the feeling that I can make room for lipedema. Let it be in my life on its side of the room. This winter I learned lipedema will never ever be gone; it may be in remission, but given a “perfect storm,”  it will reek havoc on me if I let down my guard.  It could happen before you read this blog.

Ever the scientific mind, I took mental notes, and I did work my way out of the cascade, but not yet the entire effects it had on my legs.  They have drained but not enough.  I added Vitamin B 12 to my regime and folic acid thanks to some serendipitous discussion on Lipese Challenge.  I had already been seriously and for the first time looking at my auto-immune anemia which I have had consistently since 1996. Blood disease, especially leukemia is our family nemesis, and denial for me has been the best part of valor. When folic acid and Vitamin B 12 were discussed a few weeks ago, they connected immediately to the research I have been doing on my low red blood count.  I think B12 and folic acid have helped.

It interested me, too, to see how inflammation layers.  After wearing my canklets for a year (2009), invented in desperation for cascade one, my legs were no longer hard as rocks.  With the inflammation in check, they became soft and fleshy past the hip up into the buttocks.  I hadn't noticed a pattern...how the inflammation had come or left ...and I had never heard of an inflammatory cascade.  This time, I was aware that I was cascading and I observed.  The inflammation began at the top of my right calf and a skin-fold reappeared that had taken two years to diminish.  This was the exact place that I had smacked against an open dresser drawer in my 20's and forever after felt a hard patch t like extra bone.  This time the inflammation moved up from this line towards the knee and also down past the knee into my foot.  Within two days, my left leg was keeping pace with my right leg with amazing inflammatory symmetry.  I was also in a lot of pain which is why I decided not to use my canklets in this emergency. (I haven't worn them consistently for two years as I simply didn't need them).  Finally, I talked myself into trusting the one thing that had changed my legs dramatically the first time.  I put the canklets on first thing in the morning and took them off only when I was in bed for the night.  Doing this reversed the cascade almost immediately.  I hope.

In Steinbach's novel, The Winter of Our Discontent, the hero, Ethan Allen Hawley,  comes close to commiting suicide because he loses himself in his ambition to make a name for himself. No I am not suicidal, but I am depressed to look back and see how little progress we have made, not in making people aware for we have accomplished much in this arena, but in making a name for lipedema among the medical profession.  Looking back only in my own life, I think I would now be  dead if I hadn't been my own health advocate the last 6 years, and I see no change coming in that direction.

I don't know what the median age is of lipedema women sharing support with each other on forums.  I know not many are over the age of 60.  Are we a part of statistics that appears in the mortality rates of the obese, the stomach, ovarian,  and breast cancer folks, the diabetics? At your age, this may not be a concern, but at age 62, having to diagnose myself at age 56, and becoming my own medical practitioner, as well as my daughters', and my granddaughters' primary,  is my concern.  The rage I felt for all of us when I first learned about lipedema kept me inspired.  Now, after this winter and my harrowing dance with lipedema, I am simply, honestly sad for us all.

Lipedema in the world

By Tatjana van der Krabben


The theme "Lipedema in the world", to me, is living my life in such a way that the lipedema doesn't own me. I only have so much energy to burn in a day. Certainly true. Sometimes the thought that something will cause my legs to hurt can make it tempting to pass. It's a balancing act, where I sometimes push on, because the very thing that may cost you energy, could also give you some energy.

Like last November. We had one day only to gather up all the ladies to do a short info & awareness film on lipedema. That's ambitious and we needed ALL day. Yet, we all had a fabulous day and as you can see in the image from the opening scene, we had so much fun.

By the end of the day I looked something like this. Not too bad, right?

It took me five days to recuperate. My body was unwilling to accept that I had pushed myself so hard, well beyond my limits. However, in my mind I still felt like a million bucks. That's what you see in this picture. So, all I can say is that it was totally worth it! Both for the cause and for me personally.

How about 'city trip' and 'theme park'? It pretty much equals sore legs. Still, I wouldn't want to miss it. Last year I had a great time in New York and Disneyland Paris.

 

To me, a city trip is about making choices. It's like every day life: you pick the things you really want or need doing and leave the rest for another time. Of course that sounds quite all right when you refer to doing the laundry versus making the beds. It's different when you're planning something fun. Luckily, there are many ways to work around it. I used to walk throughout the day. Now I take a taxi more often, but you could also try a bus or boat tour to see some sights without pushing yourself too hard. I also plan my route more carefully to avoid detours. If I really don't feel like making choices, I save up a little longer and plan an extended trip. With a little help or creative thinking you can still cover a lot of ground.

Theme parks are even more of problem, because beside all the walking you also need to plan your meals. After all, they mostly offer junkfood, which makes my legs ache even more. Last year, I brought quite the survival kit of homemade gluten-free and sugar-free carrot muffins, nuts and homemade kale chips, among other. That covered most of the lunches and snacks. For dinner we went to a buffet style restaurant. Normally I tend to avoid those; the endless queuing and the kids getting all restless from other kids running around usually annoys me. However, this type of restaurant is a perfect solution to a menu problem. Instead of explaining what you can't have and try to persuade them to make alterations to their fixed menu, you simply pass those items by at the buffet and pick what you do want. If it wasn't for those darn tasty croissants at the breakfast buffet, I would have gotten by on my best behaviour!

I have quite active hobbies: snorkeling and looking for fossils. A fossil hunt is not really agreeable to the legs, I'm afraid, but, again, I wouldn't want to miss it! I used to go to a site 45 minutes by car from where I live. I had to dig and sieve the sand in my makeshift

soil sieve with just the right size mesh to catch what has my fancy. Pretty heavy and hard work, but I use a manageable little garden shovel and mostly sit down when sieving the material. Like that I could keep going for several hours! It clears your head and there's that treasure hunt vibe. Too bad that site is closed now. Last year I went to a particular stretch of beach for my fossil shark teeth fix. We made it a family day trip. It was great. I hope to repeat it this spring and find me some teeth, of course! I've got some serious withdrawal symptoms here.

Of all the things that I love to do, snorkeling is the only thing that is actually good for my legs. I travel to tropical places, whenever I get the chance and take a dip, always on the look out for something I've never seen before or something funky like a shark or moray. Tropical places come with tropical heat, but provided I take a good swim twice a day, I sail through almost effortlessly. It being a hobby, going in twice a day is easy! Especially now that the kids are no longer toddlers you need to watch like a hawk near any water.

I love the beach. The breeze and the water on my skin, sand between my toes, a good book... It's my little slice of heaven. Even when parading around in a bathing suit for anyone to see, yes. At some point I got tired of fussing with a pareo or tunic. It does help that the people in the places I visited the last couple of years are quite appreciative of curves. I'm the pale one that sort of fits in. Thanks to that I became my own standard again after a while and stopped worrying about other people. A sauna, the beach at home, the pool: I'm now fine with all of it. The best souvenir I ever picked up on my travels!

A Blog for the Faint of Liver

By Maggie McCarey

From Yang Jizhou, The Great Compendium of Acupuncture and Moxibustion (Zhenjiu Dacheng), ca. 1590:
The eyes represent the orifices of the liver. When a person closes his/her eyes and falls asleep, the blood returns to the liver. From there it is transmitted to the eyes, and the ability to see results from this. When a person sleeps, now, the nameless fire within grows dim in order to revitalize. Although it may be impossible to refrain from sleeping altogether, it is advisable not to just let this energy dissipate for the mere sake of falling into a slumber. www.itmonline.org

In 1994, I had my second complete physical collapse with the following triggers within one year: 1) gall bladder surgery: 2) a 3-week pharmaceutical cocktail aimed at healing ulcers but really an A-bomb of destruction, that killed parasites as stomach ulcers are now know to be; and, 3) a fender bender which triggered within me a full-blown cortisol/inflammatory episode, so intense that I lost 60 pounds in as many days. I was so debilitated that my Baptist father offered healing prayer over me for a week, and then his prayers became little messages for me to submit to my impending death.

My daughter, Stefanie, was more proactive. She went to an Amish healer in Jamesport, MO and asked the woman to see me. This healer read eyes to diagnose weaknesses of the body. She looked at my eyes and suggested that we work on cleansing the liver. That was a fascinating diagnosis for me because my eyes in my youth were sea-foam green, gold-flecked, and black-rimmed, set against jet-black hair, and commented on daily, especially by strangers. In my adult life they had faded to a quiet unnoticeable teal-grey and I started dying my graying hair at menopause just so my eyes would reappear in the mirror. What did my eyes have to do with my liver???

That the liver is such an important organ, especially for a lipese working towards health, is key to self-empowerment. One Chinese proverb says : The doctor who heals the liver heals a hundred diseases. So, really, WHAT DOES the liver do? According to Jessica Bates in Ehow Fun Facts About the Liver:

Food enters your body through your mouth and throat, then travels to your stomach and intestines for digestion. The broken-down food materials find their way to your liver by way of the bloodstream. Once these materials break down further, they are used to make bile, a necessary digestion liquid, and other substances.

Your liver also aids your immune system in battling infection. It stores vitamins, nutrients, minerals and sugar, and it is also responsible for production. Whenever your body needs these nutrients or hormones, your liver releases them to do their jobs. Your liver is in direct control of the chemical balance in your blood.

http://www.ehow.com/way_5662043_fun-human-liver.html#ixzz2rRDt9u34

Bates also says if the liver stops functioning a person dies within a day, not exactly the immediate death of a stopped heart, to which all romantic poetry, love songs, Hugh Grant movies, and biblical references, are made but still important. In fact, the liver seems to ignored by all of humanity’s curious interest in body parts, including The Wizard Of Oz: a heart, a brain, the “noive.” No, if I only had a liver. In fact, if the word liver is mentioned in our conversations at all it is liver-lilied, a negative reflection of a person’s lack of courage, but which began as an affirmation that the liver is the seat of courage (1600’s England), and, when blood is flowing properly, the liver is the color of a lily so named after the pleasing color of the liver. Yes, call me liver-lilied! Let’s not even discuss how many times and in how many ways many of us have expressed how we HATE liver, even the thought of liver, and how excitedly we proclaim our hatred for liver in culinary conversations. Oh be careful little lips what you say.

Further, Bates says, “the liver also stores fat, and if too much fat is stored there you can develop fatty liver disease. Alcohol, toxins and bacteria are isolated in your liver and flushed out of your body. Like a filter, the liver works as the body's detoxification factory.

Detoxification of the body as performed by our toxified livers is the only game in Healthville these days. Even so, a lot of us don’t even know where the liver is located and we don’t care to. Look how the liver lays over the stomach in this illustration and how often when we feel pain in that area we think we have a stomach ache. Also, look how the liver sits on the colon where so many people have said to me: “I got a sharp pain right here.” Energy workers reading this might well consider an entire session on liver detoxing. For some of us, the liver to the right and under the breast is the exact spot we instinctively rub when we eat foods our body won’t metabolize. We call them belly, tummy, and stomach aches but they are really our poor, ignored, and abused liver’s ache.

According to Chinese medicine, the liver is always where anger is held and released from.

Certain emotional states can result from, or cause, liver qi disorders. For example, a state of depression brought on by an unexpected event can eventually cause physical symptoms attributed to liver qi stagnation; liver qi stagnation, in turn, can cause mental depression. An intense outbreak of anger can induce sudden headaches, dizziness, chest pain, and other signs of -qi flare up (as the Neijing points out: "When a person is angry, the qi moves up); liver qi flaring up can cause one to feel anger. Sometimes a person will suffer a stroke ("qi and blood rushing to the brain") during or shortly after an outburst of anger. Anger is a physiologically normal emotion and will usually not cause disease. The constant suppression of anger or putting oneself always in a situation that generates anger, on the other hand, can be the cause of long ranging problems, since it promotes a chronic state of internal qi stagnation. www.itmonline.org

So we aren’t really pissed off at all. We are livered off. Its the spot where we feel a nudgy little pain when we cough hard or in our youth where pain stabs when we played too hard, and important to this blog, it’s the spot where many of us feel chronic tenderness and low-level pain. It’s the pain I blamed on my gallbladder before it was removed, and since it was removed, mythical gallbladder scar tissue. It’s also the spot that collects and maintains fat-soluble and B vitamins for you women who have had vitamin deficiencies after gastric by-pass surgery because you no longer produce or your liver no longer stores them.

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So where were we? Oh, yes. My eyes. The eyes are windows to the soul. No that’s not it. The eyes are portholes to the liver. We brought a friend to see the Amish healer once. She looked into the friend’s eyes and said “Oh, dear you have not had a bowel movement for six days (“Exactly six days,” our wide-eyed friend confessed in the car.)

* Iridology an alternative medicine technique whose proponents claim that patterns, colors, and other characteristics of the iris can be examined to determine information about a patient's systemic health. Practitioners match their observations to iris charts, which divide the iris into zones that correspond to specific parts of the human body. Iridologists see the eyes as "windows" into the body's state of health. Iridologists believe they can use the charts to distinguish between healthy systems and organs in the body and those that are overactive, inflamed, or distressed. Iridologists believe this information demonstrates a patient's susceptibility towards certain illnesses, reflects past medical problems, or predicts later health problems. (Wikipedia)

It became increasing clear to me over the last few months that my liver has been working too hard as the “spot” has become more of a “hot spot.” I began a regiment of dandelion but still my liver grumbled too much over okay foods. I was talking to Catia, another daughter about this issue as I rubbed my liver, and she reminded me of an herb tea that I engineer with remarkable results with AIDS patients, cures for HepC and a nurse’s incurable liver condition because, my friends, the liver constantly regrows itself, and if you nourish it, it should grow faster than it is damaged if it isn’t too damaged. I purchased the herb and began using it. One day last week, I looked in the mirror and saw my old crazy green eyes peeping back. I noted I was wearing teal, okay. The day after, green. Okay, but even so, every time I went to the bathroom I looked in the mirror at a familiar friend I have missed for awhile. Then on the third day, I wore red and they were still sea-foam green. I told Stef and she said, “I noticed your eyes were back a few days ago. “ I thought and then I remembered. I looked at my nails, which have been ridging for a few years, despite my best efforts to nourish them, and they were smoothing out too. “It’s the liver cleanse, Stef.”
I will write more about liver cleanses in the near future, I promise, but in the meantime see if this description of blood and liver has anything in common with you.

LIVER BLOOD DEFICIENCY (gan xue xu): primary symptoms are pale face color; dizziness; dry eyes or, at a more advanced stage, blurry vision (especially at night); numbness in the extremities (including arms easily "falling asleep" while sleeping); limited flexibility of tendons and muscles. Secondary symptoms include pale lips and nails; dry, split, atrophied, or malformed nails; muscle twitching; spasms or cramping in the extremities; trembling hands or feet; occasional intercostal pain; ringing in the ears; in females: decreased and pale menstrual flow. The tongue is typically pale or pink; the pulse tends to be fine, or wiry and forceless.

Representative Herbs: tang-kuei (danggui), peony (baishao), gelatin (ejiao), ligustrum (nuzhenzi), cornus (shanzhuyu), cnidium (chuanxiong), zizyphus (suanzaoren), millettia (jixueteng).

Representative Formulas: Tang-kuei Four Combination (Siwu Tang); Tonify the Liver Decoction (Bugan Tang); Linking Decoction (Yiguan Jian) minus melia (chuanlianzi) plus peony (baishao).
www.itmonline.org

A Liver Song Dedicated to the Sisters I Love

http://www.youtube.com/watch?v=nGboNqFgBvw

LIVER LONG AND PROSPER!