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.