Empowerment Doesn’t Mean A Cure. It’s Hope. Mine Has Been WFPB.

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My experience has been that there is nothing  like a rare disease to make a person feel helpless. It doesn’t matter how many miles you travel (for me it was 7,000) to find expert treatment.  Over time I know I lost my hope and sense of empowerment. Then last year I learned that empowerment sometimes can be found again in the simplest of ideas. My regaining my sense of empowerment had been 10 plus very painful, long years in the making.

Before After 3
Before and after shots show the visible change since going on a whole food plant based diet. Has it cured all that ails me? No it hasn’t but that is ok. I still am significantly disabled, I am not cured. But I have something almost as valuable that I never thought possible, Empowerment! Empowerment isn’t about discovering a magic wand. It’s about finding hope that you yourself can depend on. I didn’t find hope with the “experts”. I found it through WFPB, no oil, no added sugar, low fat low glycemic eating.  Yes! I have some power over my own health!

Dercum’s Disease sufferers like myself face the same obstacles Too few doctors know about it and there is no known cure.  Also, there are really no reliable treatments. I had just gotten married when it set in with a 60 lb weight gain,  numerous painful lumps, brain fog and increased immobility.  My physician had one other patient who in the past had the same symptoms. In the years to come I saw doctors from one side of the country to the other multiple times where Dercum’s Disease and other associated illnesses were diagnosed. Dercum’s Disease and two other of the disorders  can put considerable non calorie based weight on a person.  I likely had some of these disorders since childhood. All those years and no one knew why I was as I was.  Having names for what was wrong with me helped, but there were no answers. 

In spite of  seeing the country’s top experts, I found zero relief. I still didn’t give up easily. I did both the standard and out-there treatments. I heard through a friend that she found hope spending a few days in an out of state University  hospital’s ICU getting round the clock Ketamine infusions. Fearful of my husband losing his job, my husband had to drop me off at a homeless shelter- in that community. That is where I stayed until a bed opened up in the intensive care unit.  During the treatment I went through a 2 day psychedelic trip. Ketamine can do that.  It did not benefit my health, but I did though, acquire a small collection of wigs because of the hair loss. I tried.

As is the case with many with Dercum’s Disease, the weight kept coming on and my diabetes and coronary labs got worse. Tachycardia joined the mix.   To make it harder to combat, Dercum’s Disease and physical workouts do not go together. There is a problem with the lactic acid that lingers around the Dercum’s Disease lumps.  The only physical activity I can tolerate is in the pool and that is not easy for me to access.

I kept doing what the rest of the people in the Dercum’s Disease crowd were doing and whatever doctors said to try. My physical and mental state worsened as I appeared destined to live in an ever-growing painful shell where I would die young from cardiac and or diabetic health issues.  That is what people with Dercum’s Disease usually die from.

Doctors told me that restricting calories would not help my disorder. My disorders kept the weight piling on. So  like any other red blooded American woman, it didn’t keep me from trying. Is there anything we deem worse than being large? It’s how we are socialized.  I  followed  Weight Watchers, RAD, Paleo, KETO, Low carb, the American Heart Association Diet, South Beach Diet, The American Diabetes Association diet. . It all combined had minimal positive results.  Some had horribly negative results. 

Every six months or so I was traveling to see one of the national experts on Dercum’s Disease and the other disorders commonly associated with Dercum’s Disease that I have.  I would arrive with some hope. Sometimes I would be understood and sometimes I would feel not understood.  They would put a hoop up for me to jump through, I figurately would jump it with bells and a smile. My Dercum’s Disease continued progressing. My health got worse.

Then I just could do it no more. I traveled out of state once again and was honest with my doctor.

“I’m ready to stop chasing the unicorn”, I believe were the words I used.

I do believe that there is some empowerment that can be found in accepting reality. The doctor that day told me to just accept it all as it being what it is. I have to admit that I was at the time relieved to hear that because I really could not handle trying anything else. Really had tried more ways of getting better than most. My family had sacrificed so much.  All those miles and dollars spent on improving my rare condition and everything associated with it, and nothing worked. 

Fast forward a year later. It took a weekend of endless vomiting, where I found myself in the hospital and received the lab results for me to finely listen to my body. It was the spring of 2018 when all that happened and the only logical conclusion was that I had to change my way of eating. I had been on the same way of eating everyone else in my shoes had been told to follow. I had been eating low carb and focused on proteins. From that point forward, I had to do something different.   The only reasonably healthy foods left for me to eat were the foods I had been told would be bad for this condition.  Sure they were the same foods I grew up eating from our garden, but they were considered to be “high starch” by current popular recommended diet standards.

I did some research and sure enough, there were studies done that for my overall health I could eat the garden delicacies such as basic vegetables and fruits. I could even eat beans!  I felt I had nothing to lose. I would start eating this way, get labs done and then talk to my doctor.

 I indeed did start  to eat that way and within a month had labs drawn to make sure the change agreed with me. That cardiologist appointment to discuss the results was the best doctor appointment of my life. His receptionist asked me if I had gone through bariatric surgery.   My cholesterol had dropped  57%, my A1C dropped 3 points, and I had dropped a couple clothes sizes and quite a bit of weight. The cardiologist  told me to continue eating that way. He even cancelled some of the cardiac testing he had jotted down before seeing me.

That was the moment I felt empowered for the first time in years. I made a decision for myself, sought medical labs and advice at the onset and found my own way to make a positive difference for my health. . One by one, my doctors all were in agreement that I should continue eating this way. From Ohio State University to my  cardiologist to my primary care doctor to my cardiologist, everyone was amazed with the results.

I just passed the 1st year anniversary of empowering myself through intuitive measures for my care. I have gone from a  size 32 to a size 14. I’ve gone from 13 pills a day to one prescription and a supplement. I am no longer on  diabetic or cardiac related medications. I have no more IBS symptoms or year round allergy concerns. My legs that had been miss shaped with one leg larger than the other, are now the same size and shape. I’ve lost 60% of my Dercum’s disease tumors in my stomach. For the first time in my post pubescent life, my top half and bottom half are the same size.  

It’s’ true I still have Dercum’s tumors in my stomach, arms, along both ribs, along my spine and the base of my back. They are in my neck and head legs and feet. I still have difficulty sleeping, being comfortable, and the misery can be considerable. I have brain fog, but it’s improved some. I still have to spend my day with my legs up and spend more days in bed than I want to but there is no choice. I still am forced to use a wheelchair in the house when in the kitchen. A motorized scooter is how I manage myself out in the community. I average once a week getting out if my husband drives. Every now and then I can pull off driving if it’s just in the neighborhood. Sometimes a little further than that, but we don’t count on my being able to do such things. I am still significantly suffering from Dercum’s Disease. 

But I use to have surgeries to remove Dercum’s Disease tumors. Now without surgery, 60% from one area have vanished and I possibly added 20 years to my life by improving my overall health. What is not to love about that? I wake up every day with hope. Hope is a powerful commodity not to take for granted.  My finding my empowerment didn’t find a cure but it did find a useful treatment for Dercum’s Disease, Lipedema and Lymphedema . Those disorders have not advanced. They have improved in ways that shouldn’t have happened through just nutritional changes. .  It also reversed my cardiac and diabetic numbers so I could get off all that medication.  So while there is suffering, to have any positive change, I am so grateful.

Empowerment isn’t about suddenly being handed a magic wand and all your problems are solved. Empowerment doesn’t mean what works for one person will work for another.  Empowerment for me is that I can count on myself to make decisions and to think for myself.  You never know what might change your life.

 

Cindy 10 month photo comparrison meme

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Photo by Carl Attard on Pexels.com

 

 

Celebrating 10 Months Of Low Fat, Whole Food Plant Based Healing

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Inspite of having three fat disorders ( lipedemalymphedema and  Dercum’s disease ) that are progressive in how large they can make a person appear, and have zero to do with calorie intake or exercise…I have managed in the past 10 months to do this.

What is important to point out is that having had these disorders all my life, my hips and legs were always larger than the rest of me. One leg has always been larger than the other. My arms became heavy and large over the years. My stomach, arms, neck, back, hips and legs filled with Dercum’s Disease “tumors”. Lipedema and lymphedema causes swellings that would increase at the drop of a dime. I could put on 12 pounds from these lymphatic fluids in a day or two. I could start off the day at one level and end the day looking 20 pounds heavier just by moving around.

So look at these photos and see that now my hips are in proportion to the rest of my body, my arms have slimmed down, my face has deflated, my torso is smaller. My legs are within reasonable limits. One leg is stil slightly larger than the other, but not overly noticeable.  I went from a size 32 to a size 14.

Throw in the use of a box of Miss Clairol for my hair and bam! I look so different! Another thing that this style of whole food plant based, low fat, low glycemic eating has done for me is whip my diabetes, my blood pressure, my cholesterol in shape. That happened in the first month of switching for KETO to this style of eating. So I likely have added years to my life.

Cindy 10 month photo comparrison

Here are the foods that made it all happen.

Here is what I have followed that has worked.

3  one half cup servings of dark beans.

2-3 servings of fruit including one serving of berries. Fruit is fresh or frozen

3 servings of whole grain

a serving of cruciferous vegetables

2 servings of “other” low glycemic index vegetables

2 servings of dark greens

flax seeds or chia seeds

Limited avocado (1 total a week)

limited nuts ( 0 to 2 Tbl a day)

No animal products (no dairy, no meat, no fish, no chicken, no eggs, no dairy), no junk vegan food, no highly processed foods. No oils of any kind. no added sugar or artificial sweetners

I love the work of Dr. Caldwell Esselstyn Jr,  Dr. Neal Barnard from Physicians Committee For Responsible Medicine, and Dr. Michael Greger who runs Nutritionfacts.org and The Daily Dozen Phone app.

Best documentaries include: Forks Over Knives, Diet Fiction, Eating You Alive, and What The Health.

Best Facebook groups for those like myself who have lipedema, lymphedema or Dercum’s disease interested in doing this sort of eating? Those associated with what is listed above as well as Improving Fat Disorders Using Low Fat Low Glycemic WFPB Eating

In the group for Improving Fat Disorders Using Low Fat Low Glycemic WFPB Eating, no one associated with the group makes a dime off of any participant of the group and you are asked to work with your own doctor and make sure your own medical team is on board, get blood levels done on a regular basis, and other measures to assure you are taking responsibility for your own health decisions.

It’s not about being skinny, it’s about being healthy. If looking smaller ends up being part of it all, then great.

Here is a link to an article I wrote last year on how to approach changing your life with food.

This link is to an article to help you approach this way of eating

Eating Healthy When Chronically Ill

 

We put together a big batch of this for to keep in the fridge. Cucumber cartot citrus salad with peas and tomatoes. Ate off it all weekend.

It is true that I have had some positive changes in my health since eating a plant-based diet over the last weeks. However I am still suffering from medically verified chronic illnesses. They range from the tragically common to the annoyingly rare.

I still get my butt kicked by them especially if I forget myself and become too active… Like having the audacity to go along for errands and using my scooter instead of walking, or walking across a small restaurant floor to sit at a table.

This is when, the busy world be damned, I double down in taking the best care of myself possible.

In bed I go. It can be days, weeks, months. Even in bed or wheelchair there’s no escaping the pain or the long list of other issues that come with it.. I’m rarely on my feat.  It’s been years since I haven’t been in significant pain. Movement builds up lactic acid in my muscles which just makes it worse so bed rest is the best I can do.

There was a time that my poor husband would throw together something for me to eat or go through a drive-thru. The fat, sodium, and inflammatory qualities of red meat wood just make me sicker.

Over time I’ve gotten very good at predicting when I’m going to be bed bound. When I have one or few good days in a row I’m really bad about overdoing it because I want to make hay while the sun shines. It’s an easy trap to fall into.

If I focus on plant-based nutrition, I find I recover a little quicker and have more emotional energy to stay positive during these times.

We keep our weekly shopping list to what will be the highest nutrition and easiest to manage regardless of my being in bed or sofa bound.

We do buy a limited amount of processed plant-based foods like pre-made veggie burgers and crumbles, canned beans and frozen vegetables for cases of emergency.

It’s important to make and freeze some meals in advance. Tonight we made sure he put 18 homemade spicy black bean burgers in the fridge that in the morning my husband will grill up and toss in the freezer.

I give myself permission to heal any way needed. It’s ok to find joy as I do so. Joy is healing.

Because of the plant-based diet my frame of mind is more positive and my body is changing in positive ways.  I know I’m also doing everything I can to have a quality life. Going to a plant-based diet has been the most positive medical experience I’ve ever had.

There is so much about having chronic illnesses that have no cure and few treatments that makes you feel out of control. Seeing positive results on blood sugars, hypertension,weight and swelling, from the foods you put in your mouth is empowering.