Cure Dercum's

Hidden sugars and a new yummy recipe!

2014-10-30T10:15:00.000-04:00

These 7 Foods Hide MASSIVE Sugar

It’s hard to avoid sugar when many common foods secretly contain loads of it.

You know that eating an excess of sugar will derail your fitness progress and quickly lead to an increase in body fat, but recent studies are proving that sugar is much more dangerous than we once thought.

Your risk of heart attack doubles when 20 percent or more of your calories come from sugar, according to a new study published in JAMA International Medicine.

That is no joke! So with obesity and heart disease on the line, let’s uncover the 7 common foods that you didn’t know contain sugar.

1. Fruit Yogurt
Yogurt is packaged and marketed as a diet food for women, which is outrageous. The pretty little packages may be low in fat, but just one serving contains a whopping 19 grams of sugar.

2. Pasta Sauce
This one may come as a surprise, since pasta sauce is considered to be a savory food, but alas, it has loads of sugar hiding in it. For every half a cup of store bought pasta sauce you’re ingesting 12 grams of sugar.

3. Agave Nectar
Many think of agave nectar as a free pass, since it has been so cleverly marketed as a health food, but sadly this sweetener is just as dangerous as white sugar. Agave nectar is 85% fructose.

4. Dried Fruit
Yes, even our fruit isn’t safe anymore. Most companies are adding extra sugar in with their dried fruit, making it as sweet as candy. Just 1/3 of a cup contains 24 grams of sugar.

5. Granola Bars
It may boast wholesome, whole grains on the package, but your favorite granola bar is hiding a sickly sweet secret. The average packaged granola bar contains 12 grams of sugar.

6. Energy Drinks
When you need an afternoon pick-me-up, think twice before reaching for that energy drink. Mega energy drinks contain up to 83 grams of sugar.

7. BBQ Sauce
There’s a reason that those BBQ chicken wings are finger licking good…all that sugar it’s hiding. A 2 Tablespoon serving will set you back 13 grams of sugar. Start eliminating the sugar-packed foods in your diet today. Your body and your heart will both be in better shape for it.

Simple Fruit Dessert

Eat too much refined sugar and you’re headed for obesity and a host of diseases. So what should you do with that sweet tooth of yours? Turn to nature’s candy: fresh fruit. This dessert is very simple, and oh-so-sweet. Use fresh, local, organic fruit for optimal taste and nutrition.

Servings: 4

Here’s what you need…

1 small watermelon, chopped
1 cantaloupe, seeded and chopped
1 mango, pitted and chopped
1 cup fresh blueberries
1/4 cup fresh mint, minced

Chop the fruit into small, uniform cubes. Combine the ingredients in a large bowl, then scoop into small cups. Enjoy!

Nutritional Analysis: One serving equals: 127 calories, 1g fat, 33mg sodium, 30g carbohydrate, 4g fiber, and 3g protein.

Top 3 Foods that can cause inflammation

2014-10-11T14:54:00.000-04:00

#1 – Margarine

Man-made trans fats and hydrogenated oils, otherwise known as Franken-Fats, are laden with artificial ingredients and they are the ones to be avoided—not the naturally-occurring fats. They are some of the most chemically altered foods you can consume.

It is these kinds of “Fake” fats that you need to be afraid of because they are the culprits creating chronic inflammation in your body.

Touted as the “healthier” alternative to butter because it is made from vegetable oil instead of animal or dairy products, Margarine has made its way into every grocery store in the country.

Unfortunately, it is comprised of hydrogenated oils and it’s very high in trans fat versus good old fashioned butter which consists of sweet cream and salt. In most varieties of margarine you will find up to 15 ingredients and usually only 2-3 in REAL butter.

#2 – Nondairy Creamers

For coffee lovers and enthusiasts everywhere, nondairy creamers have become an integral part of the day. Over time, however, they will also add a considerable amount of trans fat to your diet.

Don’t be fooled by the “low-fat” and “non-fat” varieties since they still have partially hydrogenated oils as the second or third ingredient listed.

It’s these kind of foods that are the real ‘ninjas’ in the food war that’s inflaming your body on a regular basis. They sneak their way in quietly leaving you susceptible and vulnerable to attack.

If you drink a lot of coffee and typically use products like this to flavor it, you can be contributing to chronic inflammation and pain without even knowing it.

#3 – Microwave Popcorn

Popcorn has been around for years and was always considered a healthy snack alternative compared to sugary things like cake, cookies and ice cream. Sure, popcorn or “popped” corn is something natural and by itself can be healthy, however, that’s not how most people consume it anymore.

The only thing scarier than the movie you’re watching is the bowl of popcorn on your lap! Now super convenient microwave popcorn has been loaded with gooey toppings like processed cheese and caramel flavors.

There’s no telling what has been added to what was once a smart decision (and we’re not even talking about toxic bag lining). Microwave popcorn is loaded with sneaky trans-fats which are much thicker and harder for your heart to move through your arteries. These trans-fats are like eating sludge. Your body can’t digest it leaving it to rot in your gut.

How to Recover From a Party or Other Random Events

2014-07-21T18:29:00.001-04:00

As many of you know because my life is an open book, I had an anniversary last week and not the good kind. My sister, Diana had passed away at the age of 46 a year ago and her best friend wanted to throw a get together for friends and family in her memory. This took place on Saturday just a day after the anniversary of her passing.

Sisters: From left Elizabeth, Diana and (me) Janet

It was nice. Actually it was very good seeing everyone. I have been hiding a lot in the last year and I know I need to get out there more but it drains me to do so.

Over 50 people showed up and for once I did not have much to do in preparation. Somehow, years ago, I got appointed my family's party guru. OK maybe my control freak side got the best of me a few times and my family just went with it but I do love (or should I say I used to love) throwing a good party.

Due to the 8 hours of standing too much, eating too much, trying to drink some beer in my sister's honor (which apparently 1.25 beers was too much), fighting off bugs way too much and the roller coaster of too many emotions leading up to and during that day, my body just rebelled. I think at this point the bad side is winning but I am hoping for a better tomorrow.

Well, the celebration of Diana's life (as we named the gathering) was 2 days ago. I am just realizing my recovery period is getting longer and longer every time I get myself out there in the real world and people still wonder why I don't go out as much as I used to. Yesterday I had a lot of shooting pains and fatigue but today on top of those symptoms I have a lot of vertigo and brain fog. My insomnia is kicking in lately as well so that does not help. In fact, I am not even sure that I am really awake and writing this so forgive me if it makes no sense.

I have been really good about trying to stay de-stressed before I have something to do outside my normal routine. I also try to do my best to take care of myself during the event by drinking lots of water, staying out of the sun and sitting down as much as possible.

Now I am realizing I need a plan of attack for after the event as well. Below I am listing just a few things that I will need to remember to do the days following any social gathering I attend:

1) Drink Plenty of Fluids

I know this goes without saying but believe me I tend to forget.

2) Get Up and Stretch

Links to For Your Health Today

After a long day my pillow and my cat seem to be my best friends. Oh, I should add my husband to that list because he ends up playing the role of butler when I am feeling very ill. (OK, honestly, he ends up playing butler a lot more than he likes and really hates it when I start calling him Jeeves).

I guess what I am saying is I could stay in bed through the whole day whether I am sleeping or not. I have even gone as far as not getting up for the bathroom until it is absolutely necessary to make the trip. This especially takes talent if you are following step 1 above.

Getting up and moving your muscles no matter how much pain you are in is very important for the lymphatic system. Whether I am sitting at the computer working, watching a movie on TV or just having a stay in bed kind of day, I make it a point to get up at least once an hour for 5 to 10 minutes.

During this time I walk around a little, get myself something to eat or drink and stretch out the muscles that are bothering me the most. At the very least, do some stretches in the bed.

3) Rest and Avoid Stress

I try to plan to do nothing at least for 1 day after the event. I make sure I have a couple of good books to read or watch an entire season of a program on Netflix. I do this all with my Kindle Fire which is probably my most favorite accessory in the whole world. Who needs a pretty purse when you got all the wonders of the world in a little tiny box? Though I could do without its horrible autocorrect but that is a story for another time.

Oh and I know you are all shaking your head at the "avoid stress" part of this step. Most of you laugh at people who tell you this. I understand. Life goes on, however, you should be able to explain to your family that you need a recovery day after certain things and plan accordingly with them ahead of time.

4) Eat Small Easily Digestible Meals Throughout the Day

If you are like me, no matter what you think going in to it, you are going to indulge on food at a gathering. Sometimes you may not even realize you are doing it but it is going to happen. It is inevitable.

You do not want to avoid eating all together the days that follow. You need sustenance to get better.

If you know one thing about me (besides my hatred towards steroids), you know I am a HUGE fan of soup but that is not always an option especially in the month of July in New England or where ever you are from in the Northern hemisphere. For the Southern hemisphere, there probably aren't many months that you want a big bowl of hot soup but you get my point.

So, soup aside, what are some other easily digestible edibles:

What to avoid:

Breading, frying, red meat, raw veggies or greasy foods. Basically all the things I normally want to eat when I am tired and feeling crappy.

What's On the Menu (by Food Group)

Meats:
Plain, skinless, broiled chicken
Scrambled eggs
Canned tuna in water but avoid the mayo (you can try with mashed avocado instead)

Grains:
Rice
Breads
Crackers

Fruits:
Go with non-citrus
Banana
Peaches
Cranberry Juice

Vegetables:
Make sure they are well cooked
Avoid corn (at all time)

Dairy:
If you can have dairy, yogurt is the way to go but try coconut yogurt which contains no dairy and is pretty yummy.

I know I am just spouting common sense but even the best of us forget to take care of ourselves. Don't worry about how sick you are going to feel and just get out there every once and awhile and try to enjoy life while you can.

Gentle hugs my DD friends!

Petition to Add Dercum's to SSDI List

2014-07-15T06:54:00.003-04:00

There has been some talk for years on this and finally our fellow DDer, Christine McGrath, decided to take action. We need as many as 100,000 signatures to make this happen so all family and friends should be asked to forward on. This will help many Americans that suffer from this disease traverse the already very difficult journey on getting monetary assistance from their disability.

The signatures need to come from United States residents but everyone can help by forwarding a message to any of your relatives or friends in America.

Please note: To build a stronger case for SSDI, make sure that you have other ailments well documented with your doctor. These ailments can include but are not limited to: diabetes; fibromyalgia; depression; anxiety and other autoimmune disorders.

Good luck!

A yummy recipe for the summer!

2014-07-04T17:44:00.000-04:00

Mediterranean Lettuce Wrap

This wrap is savory and refreshing, and is the perfect meal to get you beach ready. I recommend roasting your own bell pepper, since most store bought roasted bell peppers are packaged in oil. To do so simply throw it on the grill until soft and then peel the skin after it cools. Servings: 1

Here's what you need...

1 large leaf of lettuce
2 slices lean turkey
1 roasted red bell pepper, cut into 4 segments
2 tablespoons garlic hummus
1 tablespoon olive tapenade

Lay the lettuce leaf flat and spread with 1 tablespoon of hummus. Place the turkey slices on the lettuce and spread with remaining hummus. Sprinkle the olive tapenade over the turkey and top with the roasted bell pepper.
Wrap the lettuce, use a tooth pick to hold it together.

Nutritional Analysis: One serving equals: 170 calories, 6g fat, 15g carbohydrate, 5g fiber, and 15g protein.

South-Of-The-Border Chicken & Rice Soup

2013-12-13T12:38:00.001-05:00

Another yummy, healthy recipe from Dr. Dan!

South-Of-The-Border Chicken & Rice Soup

A bowl of this homemade soup is a wonderful meal to enjoy during the holidays. It's low carb and filled with protein and veggies to power your day and curb your cravings. Best of all it's made in the slow cooker, so preparation is quick and easy. Servings: 8

Here's what you need...

2 organic, free range chicken breasts
1 (28oz) can diced, fire roasted tomatoes
1 (4oz) can green chiles, chopped
1 yellow onion, chopped
2 cloves garlic, minced
1 head cauliflower, shredded
32 oz organic, free range chicken broth
2 teaspoons ground cumin
dash of sea salt and pepper
1/4 cup fresh cilantro, chopped
2 avocados
Tajin seasoning for garnish

Combine all of the ingredients, except the cilantro, avocado and tajin, in a slow cooker. Cover and cook on high for 3 hours.
Remove the chicken breasts from the slow cooker. Shred with a fork and then return to the slow cooker.
Garnish each bowl with a sprinkle of cilantro, a few slices of avocado and a dash of tajin. Enjoy!

Nutritional Analysis: One serving equals: 153 calories, 6g fat, 321mg sodium, 14g carbohydrate, 7g fiber, and 10g protein.

A Thanksgiving Message from NORD

2013-11-27T12:11:00.003-05:00

NORD has put together a wonderful short video giving thanks for everyone involved with rare diseases - including us patients. Check it out - it's nice to know they are there for us!

http://rarediseases.org/news-events/message-of-thanks

Happy Thanksgiving everyone!

We also are very grateful to know each and every one of you!

A healthy recipe for a yummy spread

2013-11-24T11:21:00.000-05:00

From Jean - who finds us the best recipes! Thanks!

Vegan Green Pea and Walnut Spread

This spread is really delicious and very easy to make. It makes a great appetizer with some crackers and would also be good as a dip on a party.

Yield: 2 cups
Ingredients:

1 package frozen peas, thawed (21 ounce / 600 grams)
1/2 cup walnuts chopped
1/2 cup plain soy yogurt
1 heaping tablespoon soyanaise
1 lemon or lime zested and juiced
cilantro or coriander
salt and pepper to taste
crisp crackers

Directions:

Thaw the peas and optionally lightly steam.
Allow to cool and place in a blender.
Shell and chop the walnuts.
Clean the cilantro or coriander and remove the thick stems.
Add the soy yogurt and soyanaise to the peas in the blender.
Puree to a smooth consistency.
Add the walnuts, lemon juice and zest and again puree to a smooth consistency.
At last add the cilantro or coriander and puree again.
Season to taste with salt and pepper.
Serve the the spread on flat crisps crackers or use as a dip for crudités.

Note
Recipe adapted from
http://blogs.sweden.se/food/2012/05/20/green-peas-and-walnut-dip-served-on-crisp-bread/

Recipe for Paleo Chicken Wrap - yum!

2013-06-21T11:47:00.000-04:00

Thanks to Jean for sharing this. Sounds yum!

Paleo Snack Wrap:

1/2 cup chopped chicken,

3 Tbsp Fuji apples chopped,

2 Tbsp red grapes chopped,

2 tsp honey,

2 Tbsp almond butter.

Mix and wrap in a Romaine lettuce leaf.

Handprints on the Hill

2013-02-28T11:01:00.002-05:00

Today is Rare Disease Day!

Today we recognize the millions of people in the United States and globally who are living with rare diseases. We show that we are united across the globe, across diseases, and across experiences. Together, our voices are united in support for each other and for the entire rare disease community.

NORD has received a letter from President Obama about Rare Disease Day, which begins as follows:

"I send greetings to all those observing Rare Disease Day.

View the letter >

Submit a Letter to Your Representatives

Click on the image above or follow this link to submit a letter through the Handprints on the Hill campaign. It takes just a few minutes to electronically send a message to your Representatives that rare diseases are important to you! Join your voice to the rare disease community to show that you vote and you care about rare diseases. Then encourage your friends and family to submit a letter! This is a 24-hour campaign specifically for Rare Disease Day.

Submit a letter today >

Send Us Your Handprints

Rare Disease Day 2013

2013-02-26T20:45:00.000-05:00

As Rare Disease Day Approaches, Patient Advocates Celebrate 30 Years of Collaboration But Worry About Looming Budget Cuts

On 30th Anniversary of Orphan Drug Act and NORD, Rare Disease Patient Advocates Fear That Budget Cuts for FDA and NIH Will Slow Momentum

Washington DC, Feb. 26, 2013----On Thursday (Feb. 28), millions of people around the world will be observing Rare Disease Day and this annual observance has special significance for Americans this year for two reasons.

The first is that 2013 is the 30th anniversary of the Orphan Drug Act -- landmark legislation made possible, in part, by a coalition of patient advocates who also established the National Organization for Rare Disorders (NORD) at the same time.

The second reason is that across-the-board budget cuts for federal agencies including the National Institutes of Health (NIH) and Food and Drug Administration (FDA) are scheduled to take place on March 1, with the potential for major impact on rare disease research and the development of treatments.

"NORD feels that the rare disease community is on the cusp of a major new era. But we're worried that the looming budget cuts may derail that process," says Peter L. Saltonstall, NORD's president and CEO.

"Enormous progress has been made in recent years on both the research and regulatory fronts," he adds. "But budget cuts at NIH and FDA could have a very harmful effect on the current momentum."

In particular, NORD is concerned that initiatives such as "translational research" programs at NIH to bridge the gap between promising early research and clinical trials, and implementation of the FDA Safety and Innovation Act (FDASIA) of 2012, could be delayed.

"FDASIA includes many provisions of great importance to the rare disease community," Saltonstall says. "It would be a serious loss for FDA not to be able to implement it as planned."

For these reasons, NORD sees Rare Disease Day as an important reminder of the need to address the challenges people living with rare diseases endure. These include diagnosis delay, too little research, too few treatments, and limited access to treatments.

Many people with rare diseases go for years without getting an accurate diagnosis. Only a few hundred of the nearly 7,000 diseases considered rare have FDA-approved treatments. And people affected by rare diseases often feel isolated and abandoned.

About two-thirds of the 30 million Americans with rare diseases are children, and the diseases tend to be serious and lifelong. In the U.S., any disease affecting fewer than 200,000 Americans is considered rare.

Rare Disease Day is observed around the world on the last day of February each year. As the national sponsor in the U.S., NORD works with organizations in other countries to plan activities each year. To see what's planned U.S. this year, go to www.RareDiseaseDay.US. To see what's happening around the world, go to www.RareDiseaseDay.org.

----------------------------------------------

Visit NORD's interactive timeline for the 30th anniversary of the Orphan Drug Act and of NORD.

News Flash!

2013-02-16T10:29:00.000-05:00

Dr. Herbst will be going to Sweden to give a talk on Dercum's Disease and work with other investigators and clinicians sometime in May/June. (Dates to be announced later.) Watch our site for more details. What an exciting opportunity for her to share her knowledge with others!

Please help her continue to learn more through research by donating to our fundraiser for the Dercum's Research Survey Project. Details are below along with the link to donate.

I'm excited to tell you about a new way we can help Dr. Herbst and ourselves!

Dr. Herbst has a project in mind that could begin soon. How many of you have read her article "Adiposis Dolorosa Is More Than Painful Fat"? That article helped us learn what symptoms are common with Dercum's Disease. Great information! But it was based on a survey done more than 5 years ago. Wouldn't it be great to not only get an update but to actually be a survey participant?

Dr. Herbst estimates that it will take $1500 to pay assistants to do mailings, enter and validate the data and do some preliminary analysis.

We can help by donating toward that effort! Cure Dercum's is organizing this and will keep track of all donations and donors. The money raised (minus paypal fees) will go directly to Dr. Herbst's research fund at the University of San Diego and will be earmarked for this project. Any extra money received will be saved for the next project. Periodic updates will be posted on the Cure Dercum's site. Once the money has been raised, an invitation to partcipate in the survey will be posted on our site and on facebook. If you were in the original survey, Dr. Herbst will attempt to contact you directly. If you were in the original survey and your contact information has changed, please contact her directly at kaherbst@gmail.com.

Donations can be made through the link on our site. If you are not able to use paypal but would still like to donate, contact me at damuffett@aol.com and I will give you some options or go to www.lipomadoc.org. (If you donate that way, please let me know so we can keep track of the donors for this project.)

Let's make this happen!

Diane

10 Pieces of Advice for Dercum's Patients

2013-02-10T19:56:00.000-05:00

In the last 15 years of my life, I have battled with Lyme's Disease and Dercum's. In that time I have learned a few things (mostly the hard way) and I am still learning. Here are just 10 things that I would like to share at this time:

Dercum's Disease: A Quick Overview

2013-02-07T00:49:00.002-05:00

This overview was put together to tie into the current fundraiser. If you can donate, please donate and forward on the word. If you can't donate, please pass this on to family and friends. Thanks.

Chronic Pain Stats

2013-02-02T09:10:00.002-05:00

Chronic Pain is one of Dercum's worst symptoms.The info is staggering and yet most are still not getting the relief from the pain.

Yummy Low Carb, Gluten-Free Muffins

2013-02-01T21:39:00.001-05:00

Low Carb Mini Muffins

Most baked goods are terrible for your waistline. Products made with refined flour, sugar and unhealthy fats should always be avoided. This recipe for mini muffins uses coconut flour, an alternative to wheat flour that is lower in carbs and free of gluten. Enjoy one for a breakfast on-the-go or as a quick snack. Servings: 24

Here's what you need:

6 eggs
1/2 cup coconut oil, melted over low heat
1 teaspoon vanilla extract
1/4 teaspoon almond extract
1/4 cup grade B maple syrup
1 lemon, zest and juice
1/2 cup coconut flour
1/2 teaspoon salt
1/4 teaspoon baking soda
1 cup organic, fresh blueberries
1/4 cup sliced almonds

Preheat oven to 350 degrees F. Grease a mini muffin pan with coconut oil.
In a medium bowl combine the eggs, melted (and cooled) coconut oil, vanilla and almond extract, maple syrup, lemon juice and zest.
In a small bowl, whisk the coconut flour to remove lumps, add salt and baking soda.
Mix the dry ingredients into the wet ones, then gently fold in the blueberries.
Fill each mini muffin tin to the top, then sprinkle with sliced almonds.
Bake for 30 minutes, then turn on the broil for 1-2 minutes (watch close!) to lightly brown the tops.
Allow to cool before removing from muffin tin. Store in an airtight container in the fridge for up to a week.

Nutritional Analysis: 84 calories, 5g fat, 55mg sodium, 4g carbohydrate, 1g fiber, and 2g protein

Let's Talk About the Big "O" - Going Organic Again

2013-01-26T17:40:00.000-05:00

It has been a long time but things in my life are getting back to normal...or at least what normal is for me, just moderately nutty. Though Diane has done a tremendous job running CD with very little help from me for the past year, she has politely asked me (though I believe there may have been a slight threat or two and I detected a begging tone at times as well) to get back on here. So here I am in all my not-so-much infinite glory. I hope that I can be of help to all of you even if it is just to bring the slightest smile to your face.

As the new year started I had a my first breakdown in a very long time. (I realized I promised a smile and here I am talking about going over the deep end but bear with me for a bit). This happened after a my pain doc told me that I was getting charlie horses in my stomach when I bend over because of my fat and that I need to lose weight (and here I thought he was finally getting it after 4 years) and during a phone conversation with my sister who kept telling me I must go back to yoga because it will help me.

I went from zero to crazy town in the second that followed her statement.

I told her I would love to do yoga but at the moment I physically couldn't. I bawled about my frustration of being in pain 24/7 and fat on top of it. I blubbered about how useless I now feel and that there are papers and dryer sheets on my floor because I can't bend over to put them in the trash. I wailed that I wanted a better body and whimpered that I wanted to just go hide. Finally I cried out I wanted to no longer live this ridiculously hard life. (Yes, I brought out all the "wooers me" drama I could muster between sobs as my sister listened and ate her lunch).

When I finally calmed down and as she still munched away loudly on her food she said,"Janet, you can only do one thing at a time and you can only control so much about this life you got".

So I asked, "Are you really eating carrots right now?"

At that we laughed at the fact that as I poured my heart out to her she kept on eating her lunch and waited patiently for me to finish my melt down. That is exactly what I needed though and she knew it. It was then I knew I had to get back on track and do something about this disease in a way that I could have some control. It all came back down to the only control I truly have is what I am putting in my body. After almost three weeks, I do feel a little better. I am not going to tell you I am miraculously cured but I'll take the little bit of extra energy and less stomach pain and be thrilled with that.

I am going to keep track of my trials and tribulations on the road to embracing the organic lifestyle and, I am sure, some mad threats of quitting and my guilty cheats (in order to publicly shame myself back on the diet) in my personal blog called "Living With Dercum's" (link below for those of you who want to see probably just how crazy I am) but I'll check in here with updates, tips and suggestions on this subject from time to time as well as resume my duties of helping Diane out with everything else CD does.

I know the gripes about going organic (believe me I have said them all) and they usually sound something like it is more expensive and hurts the average farmer, it is hard to find and/or an organic diet would not consist of foods I like. Well, I am here to say you would be wrong. Not entirely wrong but there are definite ways in making an organic diet and lifestyle work or even to make certain changes only on some products that could be hurting your bodies the most.

Let me address the above with some notes on each below. I'll get more and more detailed in other posts when I can or feel free to contact me directly at curedercums@gmail.com

Too Expensive:

Yes, going organic can be expensive but many supermarkets now carry their own brand which can be less expensive.
If you live within 20 miles of a Trader Joe's I suggest a weekly or monthly trip is definitely in order. There store brands are cheap but delicious and the organic is generally only ten to twenty cents more on most items and sometimes are priced the same.
Buy veggies when in season and freeze them. Most will last in the freeze up to 6 months. You can also throw a bunch together and cook in a broth them freeze and just add them to soups in the cold weather.

Hurting the People Who Make Their Living Through Farming

This is a tough one but think of it this way, the more the demand for organic product goes up, the more farmers will have to comply. The US is great with its bailouts that don't even truly help a majority of its population, so why can't we demand that they put our money to the one place it will help all citizens? They should help all farmers to get to better standards and practices and fewer toxins will be going into our bodies.

Organic is Too Hard To Find

Many grocers are making way for the organic foods either buy creating a Natural/Organic aisle or two like my local Stop & Shop has or placing the items side by side with regular items on the shelves.
Research will be your best friend here. I am starting to compile a list of all the foods I have tried with a rating for cost, taste, convenience and whatever else I can think of. I will be glad to share and take suggestions.

You Would Not Like the Types of Foods

I beg to differ, my friend. I have been discovering some great finds that satisfy any craving I could possibly think of. I just ate my mid-afternoon snack which consisted of Trader Joe Organic animal crackers and a tangerine. Late July makes great organic crackers and Whole Foods has any cheese you can think of. There are chocolates and candies of every variety made with pure cane sugar. Pastas and rice (even white rice) are made in by many different brands. The list is endless.
Most foods actually taste better if they are organic. The night I came hope and cleaned out all my cupboards to stock with my organic groceries from Whole Foods for the first time and opened up what I believe to be the first ever organic banana ever to pass these lips, I honestly moaned in great satisfaction at the taste of it. It was amazing!

Some Foods That You Should Always Eat Organically

Thin skinned fruits or veggies. The toxins seep in easier on these foods especially one grown in the dirt like carrots and potatoes.
Meats. Well, at least try to go with free-range or wild caught fish. Animals do not deserve to suffer to fill our bellies.

I won't bore you with anymore for right now but I hope that my meanderings help some of you out there.

Gentle Hugs and Much Warmth (to my fellow Northerners),

Janet

http://livingwithdercums.blogspot.com/

7 Days of Real Food

2013-01-22T10:46:00.000-05:00

Dr. Dan has issued a challenge - eat only real food for a week. (I'm pretty sure this is RAD approved!)

Here's an easy way to tell if your food is real or not: If your food can go bad, it's good for you. If your food can't go bad, it's bad for you.

Real food is fresh and unprocessed.

The Real Food Challenge

This real food challenge has the potential to change your body forever. Take the next 7 days to ONLY eat real food. One week is a very short time in the grand scheme of things, and I know you can do this.

Just try it for one week to see and feel the difference in your body.

The Rules

During the next 7 days you will avoid eating all of the following food items:

Bread
Grains
Rice
Crackers & Chips
Packaged snacks
Sugar & Corn Syrup
Soda Pop
Packaged Bars
Baked Goods
Candy

Here's a list of the real foods that you will eat instead:

Seasonal, organic Vegetables
Seasonal, organic Fruits
Lean, organic meat, fish & eggs
Nuts and Seeds

Those four categories of food can be combined into endless, flavorful combinations. Check out the following meal ideas:

Breakfast:Breakfast is the most important meal of the day. What you decide to eat when you first wake up will set the tone for the rest of your meals that day.

Scrambled organic eggs, sliced tomato and a handful of seasonal berries.
Half of a dressed avocado and a few slices of nitrate-free bacon.
Pancakes made with coconut flour and topped with chopped nuts.

Lunch: Plan your lunch ahead of time in order to avoid turning to a fast food joint or vending machine. Pack your lunch the night before and carry it with you.

Dark baby greens topped with chopped chicken breast and diced tomatoes.
Albacore tuna (packed in water), mixed with finely chopped cucumber over cauliflower rice. (See recipe below)
Turkey and Spinach Salad

Dinner: Dinner is the meal where most people splurge and eat far more calories than they should. Eating at home is the first step in reducing your dinnertime calories.

Grilled white fish, sautéed spinach and almond bread.
Baked chicken breast with steamed broccoli and quinoa.
A big bowl of arugula topped with sautéed asparagus and sliced hardboiled eggs.

Grain-Free Rice

Just because you're giving your body a break from grains this week doesn't mean your dinner will be rice-less. Fresh, organic cauliflower makes the perfect base for grain-free rice. Serve with a side of lean meat and a fresh garden salad for a low carb, real food meal. Servings: 4

Here's what you need...

1 head organic cauliflower
1 Tablespoon coconut oil
Salt and pepper

Wash cauliflower, discard the leaves, and chop into small pieces. Grate the pieces with a food processor.
In a large skillet heat the coconut oil over medium. Add the shredded cauliflower. Sauté for about 5 minutes, until tender. Season with salt and pepper. Serve as you would traditional rice.

Nutritional Analysis: One serving equals: 66 calories, 3g fat, 87mg sodium, 7g carbohydrate, 4g fiber, and 3g protein

Fundraiser for Dercum's Survey Research Project

2013-01-14T11:56:00.000-05:00

Happy New Year Everyone!

I'm excited to tell you about a new way we can help Dr. Herbst and ourselves!

Dr. Herbst estimates that it will take $1500 to pay assistants to do mailings, enter and validate the data and do some preliminary analysis.

Donations can be made through the link on our site. If you are not able to use paypal but would still like to donate, contact me at damuffett@aol.com and I will give you some options.

Let's make this happen!

Diane

A new recipe from Dr. Dan

2012-11-06T11:26:00.000-05:00

Sounds like a yummy one as the weather gets colder. Enjoy!

Cauliflower, Kale and Chicken Sausage Bake

Here's a recipe that tastes like comfort food, but without the guilt. Kale is a nutritional powerhouse, filled with calcium, and numerous vitamins and minerals. Servings: 6

Here's what you need:

1 teaspoon olive oil
1 yellow onion, diced
2 garlic cloves, minced
3 cups kale, chopped
dash of salt and pepper
Pinch of each, dried: thyme, rosemary, tarragon, and parsley
4 links nitrate-free, chicken sausage, sliced into half moons
1 head cauliflower, cut into small florets
1/2 cup chicken broth
1 teaspoon lemon juice
1 cup fat free ricotta cheese
1/2 cup Parmesan cheese, shredded and divided

Preheat oven to 425 degrees F. Lightly grease a casserole dish with olive oil. Place a large pot of water to boil with a pinch of salt.
In a large skillet over medium heat, sauté the olive oil, onion, garlic, salt and pepper, dried herbs and chicken sausage. Mix well, and then add kale. Cover for about 3 minutes, until kale gets bright green and wilted, then remove cover. Sauté for an additional 3 minutes until everything is tender. Set aside.
Place the cauliflower florets in the pot of boiling water. Boil for 5 minutes, then remove from heat, drain, and return cauliflower to pot.
Add the kale mixture to the pot as well as the chicken broth, lemon juice, ricotta cheese and half of the Parmesan cheese. Mix will over medium heat until all has been incorporated.
Transfer to prepared casserole dish. Top with remaining Parmesan cheese. Cover with foil and bake for 15 minutes. Remove foil and bake for an additional 5 minutes.
Remove from oven and serve.

Nutritional Analysis: One serving equals: 238 calories, 10g fat, 584mg sodium, 14g carbohydrate, 4g fiber, and 18g protein

Please let FDA know about our fat disorders!

2012-10-24T21:00:00.002-04:00

From Dr. Herbst:

DearMembers:

Below is information about an FDA initiative. Thirty-nine diseases are in consideration for priority and 20 will be selected. This has a Nov. 1 deadline!

As part of its commitment under the recently approved Prescription Drug User Fee Act (PDUFA V), the FDA will be conducting an initiative, called the patient-focused drug development initiative, to provide for a more systematic approach to obtain the patient’s perspective on the disease severity and the currently available treatments. The intent is to ensure a thorough understanding of the severity of the treated condition and the adequacy of the existing treatment options.

Dercum’s disease is NOT on this list!!

HOWEVER,

The FDA is also interested in public comment on disease areas that are not represented on this preliminary list. The Agency used several criteria to develop the preliminary list of potential disease areas. FDA requests that when proposing additional disease areas for consideration, please describe how you applied the identified criteria in making recommendations for additional disease areas to consider.

These criteria include the following:

Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;

Disease areas that reflect a range of severity;

Disease areas for which aspects of the disease are not formally captured in clinical trials;

Disease areas that have a severe impact on identifiable subpopulations (such as children or the elderly);

Disease areas that represent a broad range in terms of size of the affected population; or

Disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives.

FDA will consider the public comments received at the public meeting and through the docket and post the set of disease areas for FY 2013-2015 on the FDA Web site. By the end of FY 2015, FDA will initiate a public process for determining the list of disease areas for FY 2016-2017.

This is an excellent opportunity to help the FDA better understand how fat disorders affect patients. Your support is essential to ensure that your fat disorder is considered in the future as a selected disease.

Please send your comments in by November 1 to ensure that the FDA understands why your fat disorder should be selected. As you write your own letter, make points that reflect how your fat disorder meets the criteria above.

Comments should be submitted electronically at:

http://www.regulations.gov/#!docketDetail;D=FDA-2012-N-0967

Select ‘Individual Consumer’ for the ‘Category’ and ‘None’ for ‘Organization’ if no other choice is appropria te . Written comments can be submitted to the Division of Dockets Management (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852.

Further information on the patient focused drug development initiative and the list of 39 diseases initially nominated can be found here: https://www.federalregister.gov/articles/2012/09/24/2012-23454/prescription-drug-user-fee-act-patient-focused-drug-development-public-meeting-and-request-for

Sample Letter – limited to 2000 characters

To: FDA Patient Focused Drug Development Initiative

From: <include your name here>

I am writing to request that Dercum’s disease (also called adiposis dolorosa) be included as one of the diseases in the patient focused drug development initiative.

Dercum’s disease is a complex, chronic pain disorder that was initially identified in 1888 as a lipomatous disorder of unknown etiology. Dercum’s disease can affect people of all ages with an average age of onset of 35 years. People have similar signs and symptoms of fibromyalgia but have exquisitely tender fat nodules that cause them to take pain medications including opiates and intravenous lidocaine. It affects over 300,000 children, men and women in the US of all races and income levels. Over 60% of people with Dercum’s disease become disabled losing their jobs, spouses and friends. Dercum’s disease is inherited in an autosomal dominant disorder according to a paper in the New England Journal of Medicine.

What is tragic is that over 100 years, there have been no clinical trials for drugs to treat Dercum’s disease and there are still NO approved treatments and NO biomarkers or outcome measures and NO identified gene.

<Include personal story here>

By ensuring a thorough understanding of the severity of Dercum’s disease from a patient perspective, especially given the lack of any viable treatments to change the course of the disease, the patient focused drug development initiative could make a tremendous difference in the lives of a huge number of people.

NORD Launches New Blog for Entire Rare Disease Community

2012-10-18T11:50:00.001-04:00

NORD Press Release

NORD Launches New Blog for Entire Rare Disease Community

Topics to include public policy, research news, patient experiences, and innovative ways to drive progress

WASHINGTON DC, OCTOBER 18, 2012-----The National Organization for Rare Disorders (NORD) has launched a new blog to cover topics of interest to the entire rare disease community. Called "Rare Disease Dialog", it can be accessed from NORD's home page (www.rarediseases.org) or directly at http://blog.rarediseases.org.
"We'll cover 'hard news' related to developments on Capitol Hill as well as the softer side of the news, with personal reflections from members of NORD's staff and guest bloggers about their experiences with rare diseases," said NORD President and CEO Peter L. Saltonstall.
"Everyone is welcome to post comments on the blog," he added. "While basic guidelines are in place to ensure a civil, respectful discussion, otherwise no topic is off-limits and all comments will add to the richness of the dialogue."
New posts will be added several times a week, and visitors will be encouraged to comment on posts. Topics to be covered in upcoming posts include:

the looming "budget cliff" and how it may impact rare disease patients
implementation of insurance reforms in the Affordable Care Act and rare disease provisions in the FDA Safety and Innovation Act
innovative work by patient organizations and others to encourage the development of treatments for rare diseases
how to get involved in Rare Disease Day 2013, which NORD sponsors nationally

RI Golf Tournament & Some Interesting Things in the Works

2012-10-09T13:25:00.000-04:00

Last Saturday, October 6th, was the 5th Annual Barbara Croker Golf Tournament. There were over 120 in attendance (over 90 of them golfers) and it was the first year the event had a corporate sponsor, McShawn’s Pub of Cranston, Rhode Island, and many individuals and local companies that sponsored a hole and donated items and gift certificates for the raffle.

As always the Rhode Island Dercum's Fundraiser group did an excellent job. There is a lot of time and energy the committee puts in to get this event up and running every year and many of you will never know the people who do this as a labor of love for their friend and/or family member, Barbara and in turn for all of us suffering from this disease, but we all owe them a bit of gratitude for all they do. After 3 years of attending the events RIDF puts on, it still amazes me how well they are organized and how much work they are all willing to do to get the job done.

This all being said, there is always a point where I start to get teary eyed and it is usually when all the kudos are going out or when Barbara gets up and talks (and thankfully did not make me get up there with her this time – thanks Barb!). This time, I think I was having a little more emotion throughout the event because I realized just how much all these people who are not directly affected by our disease are so willing to help out and the human connection that is out there if we just open our eyes and hearts.

OK, enough sappiness. Let’s get down to business. Our biggest advocate, Dr. Karen Herbst, got up and spoke. She talked about some of the things she touched on a year ago and probably spoke about at the conference but there are a couple of things in the works that are helping her indicate more about this disease.

She spoke (and there was a great banner with all the information up) about the imaging that took place in Texas on 3 woman with Dercum’s. The imaging was done with using NIRF (near-infrared dye – to read more about this check out this link:

http://uthealth.technologypublisher.com/files/sites/p62-64_eva_sevick.pdf)

Using this method, they were able to look at how the lymphatic system was working (or in DD’s case not-working). The study is yet to be published but when it is we’ll be sure to get the link up.

Also, there has been some updated in the genetic testing of two families that have known genetic link of DD. Dr. Herbst said that there were many genes that the DD connection could be on and she was given a list of them to go through. She wants to be thorough and make sure she misses nothing so this will be a long process.

Best wishes, Dr. H and thanks for all you do. If I got anything wrong, go light on me, I have DD J
.

Our new fundraiser

2012-09-29T19:28:00.000-04:00

We've started another fundraiser to close out the year.

It's so important for us to be able to have some research done! All money raised will go to the FDRS for Dercum's Disease research. (Just Dercum's - it's specific.)

I know most of us don't have a lot of money to spare but please give what you can. Every little bit will help get us closer.

Just click on the chipin button to the right and you can use your paypal account to pay.

Thanks so much for your help!

A Warning About Eye Care and Dercum's Disease

2012-09-29T19:17:00.001-04:00

Thanks so much to Lisa La Bruyere Moon for sharing this information on Facebook.

To all my DD bros and sistas, get your eyes checked ASAP. Apparently the vascular complications cause Lattice Retinal Degeneration. I was having vision problems and thought that I was diabetic. After pancreatic procedure blood sugar leveled out so my doc sent me to eye doc. Had holes in retina and nerve tissue behind eyes. Had laser surgery to prevent further deterioration. Hopefully this will prevent retinal detachment and blindness.

Me - I've already had a retinal detachment and a cataract starting so I agree - make sure you get your eyes checked regularly!