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:
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.
Give your body what it wants - it will not negotiate... À powerful lesson and a tough one.
ReplyDeleteThanks Maggie!
ReplyDeleteCan't wait to read more!!