Dercums Disease: Mystery And Extremes

Dercums Disease Trio

What is Dercum’s Disease, that strange disorder I speak of sometimes? This is a great description of the range it can cover and what impacts it.

Those people like myself who have Dercum’s Disease have an immediate physical extremely painful reactions and swelling, brain fog because of:

-Certain Foods
-Too much physical activity, and that level before pain happens gets lowered more and more as the disease progresses.
-Lack of Sleep
-Stress that overtaxes thinking and focus, sensory and creates torturous pain, including:
a) happy occasions.
b) Surprises good and bad
c) Being overstimulated and it doesn’t take much…(light, noise, so on)
d) Trying to do more than you know you can do.

This rare disease can be seen in people of all sizes and shapes. Sometimes the Dercum’s tumors are so large you can see them, others can be easily felt when skin it touched, others are smaller and hard to detect. Some have a mixture of all three. Comorbid issues can include cardiac and diabetic issues, brain fog, lipedema and lymphedema,

One day you are walking 3 miles a day, working as a caseworker in a stressful field with minimal impact from the disorder and then you notice a couple of painful lumps on your ribs and you feel like you have the flu all the time. Annoying, but you assume it will go away….another day you realize you have pain and increased fatigue that is totally interfering with all parts of your life. You no longer rebound back into feeling better.

The pain you feel is traced to additional lumps along the ribs, shoulders stomach, back, arms and hips. Getting to the mailbox is the best you can manage. You swear you are in the early stages of dementia. You forget things that are scary.

I know I gained 60 plus pounds in less than a couple of months with no dietary changes.

Then you find out that driving the car is a problem many days because you haven’t the energy or focus, plus even outstretching your arms to hold the steering wheel is too difficult to do for long. You have zero endurance.

Dressing bathing, cooking, all are difficult.
You become a recluse, can make no plans, and working with doctors is difficult because what you have they have never heard of it. The options given to you by the experts you travel to see, you try but none of them help. But hey, at least they have worked with it before.

So that is similar what many with Dercum’s Disease go through. Some, the disease progresses slowly, some progresses quickly,

I think mine progressed quickly because of all the elements of years of advocacy and social work.

I believe many have it and don’t realize it.

I have had the tumors cut out, they grow back. I’ve had them removed from along my spine, my ribs, my upper stomach. Every single time they come back plus bring some new friends. They now number in the hundreds throughout my body, from feet to head. And the other symptoms that go with it besides painful lumps are ridiculous.

Whole Food Plant Based, No Oil, Low Glycemic Index, Low Fat, Low Sodium though has been the best remedy. Any relief feels like a miracle. It’s reversed weight gain from Dercums Disease. That has been a moral booster and a moral booster has been greatly needed and appreciated.

This way of eating has had a wonderful impact on my cholesterol, blood pressure, and no more suspected tachycardia. Blood sugars are pretty good too.

It also has minimized the number of tumor in my stomach area. Very happy about that.

Worse thing I ever did for this disorder? KETO. I did two variations of it and it was crash and burn.

Gourmet Black Beans Burgers Using WFPB Spinach Artichoke Dip

Bean Burger ala Dippy Plate 2

We hadn’t been there in 10 years. We went back to Fitz Root Beer Bottling Company and Restaurant as part of our 10th anniversary week.  Heard they now serve a mean black bean burger. It was delicious but when I enquired as to what was in it, I learned that the secret ingredient was their spinach-artichoke dip. Drats! It had animal products in it.

Looked online for simple spinach-artichoke dips that didn’t use oil or animal products. They may be out there, but I didn’t find any.  I have these stupid extremely painful Dercums Disease tumors all over including my arms and along my spine.  So being on me feet, using my arms for any length of time without arm rests and so on, was a no go. So that took away most options. I knew my husband and son would not be willing to do all the work on new recipe like this. Ii was going to have to wait until I had a good day and play with this and just pray it didn’t get too involved. They had enough on their plates. I would need to be the one to at least do parts of it. So it had to be simple.

This was one of those situations where having convenience appliances like a Vitamix makes all the difference. And my husband took care of the more taxing parts of it. Love, love, love the results

So with Fitz Root Beer Bottling Company and Restaurant’s bean burger as inspiration, and guidance from reading multiple recipes online, I came up with this recipe. My husband and I just love it and we swear it’s every bit as good as what we had at Fitz, but without the animal products. It is still 100% compliant to a WFPB No Oil or added Sugar, Low Glycemic Index and Low Fat and Sodium Way Of Eating.

Both recipes have also been geared to be exactly the amounts needed to make exactly 7 to 9 large burgers or 14-18 smaller burgers. If you want dip to spare for the days to come, just double that recipe.

The recipe for the dip is at the end of this article. Highly recommend it as a dip on it’s own.

Black Beans w/WFPB Spinach-Artichoke Dip Burgers (Wowzer Burgers)

Makes 7-9 large burgers or 14-18 smaller burgers

Preheaat oven at 400 degrees F

2 cans black beans, drained and rinsed..

1 can of any kind of lentils OR my favorite, 1 packet of Target’s Simply Balanced black beluga lentils (if you can’t find these and don’t want to cook lentils, just skip them and maybe use less of the dip sauce)

* 1 cup of the Spinach-Artichoke Dip (recipe at the end) combined with 1/3 cup salsa of your choice

2/3 cup or more compliant crumbs, 100% oil free white flour free, 100% whole grain options such as whole rye crackers, whole wheat bread

1/2 tbl. garlic powder

Step 1. Combine the ingredients in the order listed. Will be meatloaf consistency.

Step 2. For the burgers  and stick them covered, in your refrigerator for 1-2 hours.

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Step 3. On parchment paper lined cookie sheets, bake the burgers for 10 minutes. Remove and allow them to cool enough to be easier to flip over. Then bake for another 10 minutes. Remove from oven and let set for 15 minutes. Serve or cool off completely and freeze.

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Vegan Oil Free Baked Spinach Artichoke Dip

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It gets incredibly thick when it bakes. That’s what you want so it helps the beans hold together in the bean burger recipe.

Preheat Oven 425 degrees

3/4 cup raw unsalted cashews (either soak in water for 4 hours or use quick method of bringing them to a boil in water with a good size squirt of lemon juice, then cover and let sit for 20 minutes) drained

2 cloves of garlic sliced

1/2 small diced onion (or you can add in onion powder to taste later on)

3/4 cup unsweetened non diary milk (plant milk)

1/8th cup (or more) nutritional yeast

1 Tbl lemon juice

1/2 tsp salt

2 cup loosely packed fresh spinach

One 14 oz can oil free artichokes

optional vegan parmesan cheese

Combine all the ingredients except vegetables in a high power blender and pulverize until very smooth. Add the vegetables and blend until smooth (If you are making this as a dip only, you may want to leave it chunky).

Pour into a small baking dish, sprinkle if you desire a little additional seasoning or nutritional yeast on the top.

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Bake for 20 minutes or until browning and thick.

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Healthy “Fried” Cauliflower W/ Dipping Sauce

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air friend cauliflower in oven
Air Fried or Oven Fried, No oil needed for a delicious result
cauliflower air fried
Whole Rye, oil-white flour-sugar free breading that is held to the cauliflower by a light coating of salsa. Dipping sauce in the top left corner uses garbanzo beans, salsa, garlic and salsa with crushed red pepper.
Air Fried Cauliflower zoodles with lentils and mushrooms berries
Jazz up any meal . Dipping Sauce used with Air Fried cauliflower for a delicious Au Gratin style dish minus the cheese! Served with left over zoodles with mushrooms, black lentils and oil free sugar free marinara sauce.

People who still include animal products in their diet have this pre-conceived notion that either all Vegans are “fat vegans” meaning they eat unhealthy…or that my eating whole food plant based (WFPB) must leave me starving or eating salad all the time.

Well what if I told you that the photos you saw above are examples of a way of cooking and eat that have helped me eat healthy. Do you see any salads? I never go hungry. My husband and son both help with meal prep which is great. But it’s simple for even one person to pull off. I am disabled so sometimes I do need assistance by them doing the cooking for me.

First of all, Everything about how I eat is satiating because of all of the fiber in the food. My meals are never sparse, they are filled with delicious, colorful and enjoyable options.

Not all vegan food especially in restaurants is healthy though, so I prefer our family make our food at home. It’s not difficult to make our favorites in a way that is healthy without losing the textures and tastes we love.

Recently for our anniversary we ate at a vegan restaurant in St. Louis, Missouri. The Cauliflower sounded delicious but it was coated with white flour and not at all crisp. It was soggy from both the oil it was cooked in and the oil based buffalo sauce it was doused in. I did not enjoy it. The endothelial cells of my lymphatic and cardiac system didn’t need all that fat and overly processed grain.

So we came up with this way of making the dish so that it is low glycemic index,  oil free, low sodium, low fat Whole Food Plant Based.  All it takes it takes is typical, homemade or store bought oil-free salsa is used to coat the cauliflower . Then coat it with 100% whole grain crumbs. Bake on parchment paper lined cookie sheet or use an air fryer.

Because I try to keep it low glycemic index, I prefer using authentic, European style whole rye bread or crisps. I use a hard dark version and a light softer version. I keep it no oils or sugars white flours in the ingredients, lower sodium. Whole rye breads down in our system slower, giving a slow steady stream of energy without spiking blood sugars.

Dipping sauce is easy and can also  be used as a sauce for macaroni and un cheese or as a hummus like dip.

Healthy “Fried” Cauliflower

cauliflower air fried

1 smallish head of cauliflower or  12 oz bag of fresh cauliflower florets

1/2 cup salsa or hot sauce of your choice

2/3 cup whole rye/pumpernickel bread or crackers/crips crumbs(oil free, sugar free, no white flour)

optional to taste :garlic powder, onion powder, low sodium curry powder, turmeric, dried crushed red pepper

Directions:

Step 1: If using traditional or toaster oven, preheat at 425 degrees.

Step 2: Divide the clean cauliflower into reasonably small pieces. (make sure pieces are not wet)

Step 3: With your clean hands, toss together the cauliflower and salsa until thoroughly but lightly coated.

Step 4: Sprinkle crumbs over the coated cauliflower, and toss with your hands until thoroughly but lightly coated.

IF BAKING:  Place cauliflower pieces on parchment paper lined cookie sheet, bake for 15-20, turn each piece over and rotate pan at the 10 minute mark.  Each oven varies, keep an eye on it the first time so you don’t over bake.

IF USING Air Fryer: We have owned two different air fryers. My first one was a basket style air fryer and the one we use now is like a small toaster oven but it is an air fryer as well (Black N Decker).

-Air Fryer that looks like oven style 10-15 minutes, no flipping needed. One single layer, the pieces can be close together.

-Basket style air fryer may be better to keep it one layer, but experiment.
air friend cauliflower in oven

Dipping Sauce:

Play with this. You can create whatever suits you.

1 can garbanzo beans, drained and rinsed

1/4 cup unsweetened plant based milk

2/3 cup salsa or 4Tbl or more or less hot sauce (depending on your preference)

1/4 cup Nutritional Yeast (I like B-12 Fortified and Trader Joes is very tasty)

Garlic Powder to taste plus others you may like to add (suggestions would be same as the cauliflower coating)

optional: add 1/8th cup ground cashews with a splash of lemon (cashew cheese base for added creaminess)

Also a splash of apple cider can make it tangy.

We use a high power blender (Vitamix) to blend all ingredients until smooth. Feel free to add enough liquids to make it blend smoother.

The Dipping sauce can be added directly to the cauliflower or used on the side just for dipping. Great on pasta or for dipping fresh veggies, or used in burritos.

 

 

 

 

 

 

 

 

 

When Food Takes On The Wrong Role

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silhouette photography of people on theater
Photo by Wendy Wei on Pexels.com

Arnold Schwarzenegger playing the role of Cinderella in “Rogers and Hammerstein’s Cinderella”.  Meryl Streep cast in “Grease” as Danny Zuko.

Can you imagine going to a play and being handed a playbill and seeing that level of miscasting?  I would find it fun at first, but personally I would want to see more logical choices or the roles.

I would be asking myself, “With the means to hire a well known actor to play the lead, with so many other options available, why make such a poor choice?”

The producers and directors have a list of parts to cast and a list of available options for actors to play those parts. Auditions are many times held, trying to find the right one for each role.

We make “casting choices” in the form of life choices every day. Imagine each day we get out of bed, we walk out onto Life’s Stage in a production of “A Day Of Living”  Each of us are our own producer and director of a significant part of our own story.  

 What options are  you going to select in your life today?

I speak from experience like so many others. Foods can be so addictive especially  chocolate, cheese, meat, plus other processed sugars and animal proteins.  Many of us are taught from a young age to have these and similar addictions to help us deal with our needs. Those serotonin levels rise with all of it. Life can be complicated and eating processed sugar and fats are so very easy and handy. All that immediate gratification is enticing and potentially life shortening.

I use the analogy of a stage production and the playbill that is the official accounting of each day’s “performance”. The playbill shows who plays what role.  For me it’s helpful to be able to visualize and pinpoint the questionable “casting”, if you will, of how by habit in the past I coped with life. It keeps me on top of things. Many times food is the go to for needs that really are better handled by other options. Sometimes we learn it young.

 

I still remember to this day being 4 years old and it was a miserable time in my family with deaths, stress, my grandparents being in the hospital for months due to severe injuries from a car accident. My mother, sister and I lived with them.  My poor Registered Nurse mother had to work some horribly long hours and oversee the care of my grandparents. They had different people taking care of my sister and I. Those caring for my sister and I would give us ice cream at night as something in which to look forward.

An evening snack was called “a party” and it was always something wonderfully sugar and fat filled.

The pattern had begun.

To make things more annoying I have 3 fat disorders that, since childhood , made me large and misshaped. What I eat and how I exercise had made no positive impact on those. No doctor realized I had those. Dercum’s Disease, lipedema and lymphedema went overlooked and mistaken for obesity for decades.

I was so worn down as I struggled with the lack of impact of dieting and seeing that it made no difference if I ate or starved myself. Those fat disorders are fairly painful.  I was in misery for decades. I remained large and misshaped, it made it easier to make some pretty unhealthy choices. Why not have a piece of Dove Chocolate when anxious? Why not eat a Big Mac when hungry?  

Playbill Chocolate red flag

After decades of feeling helpless, and low carb diets doing nothing for me,  life handed me the path I had sought my whole life. Over a year ago I got violently sick on animal products with horrible blood sugar and cardiac related lab results. I discovered WFPB No Oil, Low Fat, Low Glycemic Index, Low Sodium. I started to see better labs, weight started dropping.  There has also been a bit of a budge on some of the symptoms associated with my fat disorders. 

Sure I will always have three painful, annoying fat disorders. That’s how the ball bounces. I have fibromyalgia and like all other humans, I have a variety of stresses. I can’t do a whole lot to change some things, but I can empower myself and do what is possible. Some of those symptoms for those health issues have improved. Some remain the same. I enjoy taking far fewer medications than before.  I enjoy having heathy coronary and blood sugar numbers. I find joy in what is possible as I continue to learn to coexist with the rest.  The power is in making good choices and lovingly holding myself accountable.

As I sit here finishing this, my husband came home from the grocery store. To this day my mind wants to ask him if he brought home chocolate. I have to remind myself of that playbill. Chocolate is no longer a regular on my playbill. It’s been replaced by strawberries or an apple or watching a good movie. 

Playbill Healthy Blue
I don’t do all these, but it gives you an idea. When I struggle, I literally picture someone announcing a change in who is playing what role.
Before After 3
It’s worth it.

 

 

 

 

YUM! Healthy Vegan / WFPB Sloppy Joes

Sloppy Joes on rye

High in protein, fiber and iron, lentils are wonderful. The key to a great healthy whole food plant based sloppy joe is a combination of  meat-free meaty textures and low sodium spicy tangy seasonings. 10 minutes is all it took and the leftovers tasted even better than it did first time around!

Use in sandwiches, on top of low glycemic index grains,  whole grain organic pasta, in whole grain organic wraps, taco shells, or on top of salad!

It’s fine if you use only one type of lentil or bean, but for a meatier texture you  want to use a combination of two different size cooked or prepared lentils/beans. Finely and coarsely chopped vegetables can also be great in the mix. Taste along the way to get it seasoned just how you like! (Something you can’t do that with meat!)

Easy and Delicious  Healthy Whole Food Plant Based Sloppy Joes

-2 cups of black mini lentils I believe they’re called Beluga lentils. In this case they were already prepared with no added salt and so I just reheated them in the microwave I purchase them from Target.

-One can of red lentils already prepared no added salt I purchased them from Whole Foods.

-One small can of tomato paste

-A can of water using the can of tomato paste was in

-optional ingredients 1/2 cup of any chopped sautéed in water vegetables such as onion, celery, tomato, peppers, mushrooms and zucchini.

Here are the seasonings that you could possibly use any combination of

-Splash of apple cider vinegar

-Fennel to taste

-Garlic powder to taste

-Chili powder to taste

-Onion Powder to taste

-Garlic Powder to taste

-Oregano to taste

-Dried crushed red pepper to taste

-Turmeric to taste

 

Instructions: Combine all ingredients and simmer until heated. Do not overcook. Great as leftovers.  Serves 4-6

 

A Year Without Animal Products And The “Unlikely” Woman Is “Glad”

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Last year I started this blog. I felt at that time that the most honest title I could give it would be “The Unlikely No Meat Please Gal”. Meat and animal products had been the center of all my meals for 55 years.

I grew up in the Ohio farmlands and there were a few decades where very few vegetables were consumed but many, many meals of meat, eggs and dairy. So the chances of ever saying, “no meat please” were practically non existent. So that was the title of this blog,”The Unlikely No Meat Please Gal”

After more than a year of not eating meat, dairy or eggs, I felt that it was time to change the name of this blogging effort. I thought about why my commitment to not eating meat and other animal products was strong, and the new title was easy. I thought about the reversal of my heart and diabetic issues. I thought about how the dress I wore when I married my husband 10 years ago is now way too big for me and yet a year back I couldn’t have squeezed into it. And just the hope it all has brought to me.

I am indeed “The Glad To Not Eat Meat Gal”: A fat girl  from St. Louis, Missouri who is now at a much healthier weight and better lab results. All of that inspite of 3 fat disorders (lipedema, lymphedema, Dercum’s Disease) that makes it very difficult to lose weight. Am I cured of any of them? I stand firm in saying that it has reversed some of the symptoms. I would not say that I am cured, but I’ve changed the quality of my life and I no longer feel helpless. So in addition to everything else, less depression that comes with being diagnosed with a rare disorder that had taken over my life.

From 13 pills a day to one prescription and a selenium supplement, down in clothes sizes and up in hope,, I am forever The Glad To Not Eat Meat Gal. I am forever no animal products or oils, period.

 

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Thank you to my friends, family, doctors, Forks Over Knives community, the STL Veg Girl, Dr, Joel Kahn’s publicly shared information on this topic, nutritionfacts.org , Clayton Medical Associates and my fellow members of the Lipedema, Lymphedema and Dercum’s Disease communities who have supported me on my efforts.

Easy Black Bean Burgers Recipe

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What has kept me sane in the last year. Black Bean Burgers.  I get requests for the recipe every week so I thought I would post this. Easy to make, season to taste, Use as a healthy substitute for animal product burgers, on top of riced vegetables or on top of greens. Use t as part of a buddha bowl.  Top it with fresh tomatoes and some pickles, hummus, cashew cheese sauce,  onions, salaa, a couple sliced olives, mushrooms or a pile of greens

Stick them in the freezer for fast meals.

Ingredients:

Your choice of a bag of dried black beans (usually a pound size) cooked per directions, or 3-4  cans of drained and rinsed black beans. Organic and salt free is best, but rinsing the normal kind helps quite a bit.

A variety of salsa or oil free huumus that you enjoy. (We really enjoy low sodium black bean salsa. It blends in well and keeps it moist) I use 1/4 or more.

Ground Flax Seed and water or Bob’s Red Mill Vegan Egg substitute or a combination of the two. (For binding). You want it to be the equivalency of 1 or 2 eggs.

Use any of the following to help binding:
-oats (whole or ground into flour)
-garbanzo bean flour (Bob’s Red Mill is easiest to find)
-compliant bread ground into crumbs
The amounts vary from a half cup to a cup or so. Enough to make a meatloaf kind of consistency.

Any finely chopped vegetables you enjoy (optional). The key word here is finely chopped because big chunks may make it easier for the burger to fall apart. Ideas include beats, onions, peppers, carrots, cauliflower,zucchini, chopped baby kale, a little mashed sweet potato with skin left on.

Suggested possible seasoning (Pick your favorites)

-Curry Seasoning
-Turmeric
-Garlic Powder
-Onion Powder
-Dried Crushed Red Pepper
-Black Pepper (I’m allergic so I don’t use it)
-Oregano
-Basil
-lime juice
-lemon juice
-chopped fresh cilantro (really great with the lime juice)

-to get the B-12 as you would from meat in each burger, use a fortified nutritional yeast and sprinkle into each burger you form.

Other alternatives: Use different kinds of beans, lentils and peas in with the black beans.

Directions:

Using a fork, mash the beans. It will be lumpy and it’s fine for them to not be completely mashed.

Combine ingredients with the beans and with clean hands or a fork combine the ingredients.

You can vary the amount of binding ingredients to make sure that it is a meatloaf like consistency. You can also refrigerate the mixture to get it to firm up. I have also found that just letting the mixture set for a few minutes on the counter helps this too. It will firm up in the oven if you bake it.

TASTE IT AS YOU MAKE IT TO ADUST SEASONING AND INGREDIENTS.THERE IS NOTHING IN IT THAT SHOULD MAKE YOU SICK.

Patty making:

We find it helpful to make the patties two different sizes. A fourth cup size and a half cup size. That way you can combine one or the other with different low glycemic meal items and keep the low glycemic carb load within reason.

Also we make some thinner but larger in diameter and some a little thicker. No matter what, make sure they are firmly put together and not so big that they are more likely to fall apart.

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Cooking Instructions:

On a parchment paper lined cookie sheet, place reasonably spaced out patties. You can sprinkle additional seasoning options.

Bake in a preheated 375 degree oven for 20 -30 minutes. Use a non slotted spatula for all flipping and removal of burgers.

You remove it from the oven at the half way point, allow it to cool down just enough to let it firm up, and then flip the burgers. Reapply any seasonings if you want. Place back in oven for additional time.

When done, allow the burgers to “set” for 10-15 minutes. They should have the firmness of any typical burger.

Good news is that if they crumble ( only once has this happened to me and that was in the beginning), just set them aside in your freezer and use the crumbles for tacos, burritos or in other dishes.

Storage:

Once cooled down completely, I use your favorite freezer safe container. Use layers wax paper between each layer of burgers. I put in a combination of sizes in each layer so I don’t have to dig through the layers to find the size that works. Store in Freezer for weeks.

Typically we make 12-24 black bean burgers at a time and freeze them. It is so worth it. Whether my husband is cooking or I can manage to reheat them myself, it’s great for throwing together a no fuss meal with some greens and fresh fruit and veggies on the side. Keeps me compliant.

Chronic Illness makes it important not only to stick with eating healthy, but to make it doable. For those with crippling illness, It is fine to make this and set it aside in the fridge for a day before making the patties and baking them. No need to be on your feet too long. Or sit at your table and work on it. A little effort on making these means that you will have many easy meals in your future.

Keep bags of fresh dark greens, fresh fruit, and vegetables you can eat raw or easily prepare in your fridge. Keep frozen vegetables, berries and fruit  in your freezer. 

 

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The cheese like topping is a combination of Trader Joes Cashew Cheese Fiesta Dip, additional fortified nutritional yeast to make it cheesier, garlic powder and a touch of crushed red pepper.