BLACK BEAN, SWEET POTATO, AND CHICKEN SAUSAGE STEW

1 tsp olive oil or MCT oil

1 sweet yellow onion, chopped

2 cloves garlic, minced

1 red pepper (optional)

1 carrot, chopped

1 medium sweet potato, peeled and chopped (or more)

1-2 cups canned or frozen corn

1  14.5 oz can of diced tomatoes

1  14.5 oz can fat-free, reduced-sodium chicken broth (or vegetable broth)

2  cups water

1/2 tsp ground black pepper

1/4 tsp salt

1/4 tsp cayenne (increase or reduce depending on desired spiciness)

1  15 oz can black beans, rinsed and drained

3-4 spicy chicken sausages, cut into 1/4″ circles.

Heat oil in Dutch Oven over medium heat.  Add onion, garlic, red pepper, carrot and cook, stirring frequently until veggies are tender.

Stir in sweet potatoes and corn.  Add can of tomatoes, including liquid.  Add chicken broth, water, pepper, salt, and cayenne.   Heat to a boil, reduce heat, and simmer about 20 more minutes or until sweet potatoes are tender.  Stir in beans and sausage pieces and simmer until heated through.

If you have never tried chicken sausage, they are one of my favorite things.  They come in many varieties, and are widely available now…from traditional grocery stores and Costco to Trader Joe’s and Whole Foods.   For this recipe, I prefer a spicy variety, such as jalapeno, vs. a sweet variety like apple or mango.  There is often a little bit of cheese in chicken sausages, such as  apple and gouda or spinach and feta flavors.  So that will be a tiny cheat.  However, a few sausages gets spread over many servings.

Let me know if you try it and how you like it!  If you would like to share a recipe, please type it in the comments, or send it to me and I will post it in a future blog entry.   Send it to tinatranfaglia@fatdisorders.org.

If you are enjoying following this blog, there are several things you can do:

1) Register your email to receive blog alerts….you will get an email delivered to your inbox whenever there is something new on the FDRS blog.  The sign-up box is in the upper right hand corner of the page.

2) Buy a $5 coupon booklet for Macy’s Shop for a Cause.  If you spend just $20, you will get more than you give!  You will really be helping FDRS to raise critical funding for future research into our fat disorders.  If everyone gives a little, we all benefit.  You can order right from our website by clicking here.  Encourage your friends and family to participate.  (Chicago area folks can also participate in a Lord & Taylor Shop Smart/Do Good program.

3) If you wish to read past entries on the diet blog, click on the RAD Diet archive here.

THIS IS A NATIONWIDE PROGRAM, WITH DISCOUNTS AVAILABLE IN STORE AND ONLINE ALL DAY SATURDAY,  OCTOBER 16, 2010.

You can help FDRS raise money for research into rare adipose disorders and get a valuable coupon booklet in return!  You buy the coupon booklet for $5, and FDRS gets to keep all of  the proceeds, which we will then put towards our research fund.  The booklet contains a coupon for 25% off any one item,  and an all day savings pass for 20% off most other purchases throughout the store, and 10% on select items on Saturday October 16, 2010 (applicable discounts and exclusions detailed below).  If you open a new Macy’s account, additional discounts apply.  In addition, when you drop your filled-out ticket into the box in-store, you are entered into a drawing for $500.  That’s right, every store will give away a $500 Macy’s gift card!

If you can help us today, please purchase your coupon booklet below.  It will be mailed to you in a few days.  Many people are buying multiple booklets to get extra 25% off coupons (each coupon can be used for one item only).  If you spend just $20 on one item at Macy’s, the booklet pays for itself.

Thank you. And please spread the word to your friends and family so that they can benefit and FDRS can benefit!  For any questions, please email us by clicking here.

Here are the Terms and Conditions for each coupon:  Note that this Shop for a Cause Event takes place on October 16, 2010.

25% off Coupon–Good on a single, regular or clearance fashion item for the entire family, including accessories; plus selections for the home.

Excludes Everyday Values, specials, super buys, furniture, mattresses, area rugs, all regular-priced bridge & designer handbags & designer sportswear, cosmetics, fragrances, watches, electrics/electronics, Oval Room, 28 Shop, eSpot, sterling flatware, All-Clad, Emporio Armani, Baccarat, Tommy Bahama, Coach, Dooney & Bourke, Dyson, Ghurka, Henckels, Juicy, LaCoste, Lalique, Lauren/Polo/Ralph Lauren, Levi’s/Dockers, MICHAEL Michael Kors/Michael Kors, The North Face, Not Your Daughter’s Jeans, Reebok Easytone, kate spade, Sketcher’s Shape-ups, Tumi, Louis Vuitton, Wacoal, Waterford China/Crystal/Silver, Wusthof, William Yeoward, selected Licensed Departments.  Not valid on previous purchases, special orders, special purchases, services, jewelry trunk shows, payment on credit accounts, bridal salons, gift cards, restaurants, gourmet foods, wine.

20% All Day Savings Pass:  Discount good on All sale & clearance and select regular-priced women’s, men’s, and kid’s apparel and accessories, fine jewelry, frames, bed and bath items, housewares, luggage, and china.

10% off All Day Savings Pass:  Discount applies to All sale & clearance and select regular-priced furniture, mattresses, area rugs, electrics and electronics.

20%/10% Pass excludes Everyday Values, specials, super buys, all regular-priced bridge & designer handbags & designer sportswear, cosmetics, fragrances, watches, Oval Room, 28 Shop, eSpot, sterling flatware, All-Clad, Emporio Armani, Baccarat, Tommy Bahama, Coach, Dooney & Bourke, Dyson, Ghurka, Henckels, Juicy, LaCoste, Lalique, Lauren/Polo/Ralph Lauren, Levi’s/Dockers, MICHAEL Michael Kors/Michael Kors, The North Face, Not Your Daughter’s Jeans, Reebok Easytone, kate spade, Sketcher’s Shape-ups, Tumi, Louis Vuitton, Wacoal, Waterford China/Crystal/Silver, Wusthof, William Yeoward, selected Licensed Departments.  Not valid on previous purchases, special orders, special purchases, services, jewelry trunk shows, payment on credit accounts, bridal salons, gift cards, restaurants, gourmet foods, wine.

NEWS CHANNEL 10 SUMMER CELEBRATION.

Kristi enlisted the help of some good friends, Ruth Ward and Diane Underwood, who worked hard alongside a host of other volunteers, selling roasted corn, hamburgers and hot dogs to a hungry crowd.  Along with a smile and good food, they also handed out FDRS brochures helping to raise awareness about fat disorders.  A good time was had by attendees of all ages.

Kristi is now hard at work on final details planning her upcoming

SECOND  ANNUAL CANADIAN,TX FDRS FUNDRAISER

on September 11th, 2010 from 10 am to 4 pm

Last year’s event was very successful and this year Kristi has expanded the event to include a 5K Run/Walk and a 1 mile Fun Run/Walk organized by Mistie Walser.  There will be a luncheon at Noon, a Silent Auction, Speakers and a screening of an original documentary film, “Going for the Underdog”, by Kimberly Lowery.  There will also be opportunities for CVAC sessions at reduced rates at the Canadian CVAC Center.

So, if you haven’t made your plans to attend yet, there is still time to come join in the fun for a worthy cause.  Thanks to Kristi, her friends and family for their dedication to FDRS and their hard work to raise funds for research.  You rock!  If you need further information, please add a comment here and someone will answer your questions.  Hope to see you in Canadian!!

Did you also know that you can now sign up to receive alerts whenever FDRS posts new information?  Simply enter your email address in the large box in the upper right hand corner of the screen.  That way, you’ll be sure not to miss any new posts!

You can help FDRS raise money for research into rare adipose disorders and get a valuable coupon booklet in return!  You buy the coupon booklet for $5, and FDRS gets to keep all of  the proceeds, which we will then put towards our research fund.  You receive a coupon booklet for 20% off any one item, and 15% off all your in-store purchases on October 5, 2010 (exclusions detailed below).  You can combine these offers with an additional 10% off for using your Lord & Taylor credit card, or 15% off for opening a new one.  If you are unable to shop on Tuesday, October 5, you can do a “pre-sale” starting 5 days earlier, where you shop and use your coupons but pick up your items on or after October 5.

You can even use these coupons for Coach items and other expensive brands which are often excluded from coupon promotions (you can’t get the credit card bonus though).  In fact, if  you need higher-priced items, such as winter coats or boots, you may wish to buy multiple tickets so that you can use the single 20% off coupon on each item.

In addition to these benefits, FDRS will be eligible for contests for selling the most tickets, an in-store lottery among redeemed tickets, and a percentage of ticket sales made by in-store Associates.  So your purchase goes so much further than the $5 donation!  If you can help us today, please purchase your coupon booklet below.  It will be mailed to you in a few days.

Thank you. And please spread the word to your Chicago-area friends and family so that they can win and we can win!  For any questions, please email us by clicking here.

Here are the Exclusions:

NOTE:  THIS OFFER IS FOR 4 CHICAGO AREA LORD & TAYLOR STORES ONLY (Old Orchard, Northbrook Court, Woodfield Mall, and Oak Brook) FOR SHOPPING ON OCTOBER 5, 2010.

20% off Coupon–Good on one item only.  Excludes cosmetics, fragrances and beauty accessories; diamond solitaire rings; Uggs; Smart Value Items; Beauty Salon; Restaurants; Store Services; Gift Cards.  Not valid on Limited Day Specials, selected special sale events or prior purchases.  Bonus savings % applied to reduced prices.

15% All Day Savings Pass:  Excludes Diamond solitaire rings; Ugg; Smart Value items; Beauty Salon; Restaurants; Store Services; Gift Cards.  Not valid on Limited Day Specials, selected special sale events or prior purchases.  Bonus savings % applied to reduced prices.

Extra 10% with existing Lord & Taylor credit card: Excludes Coach, Juicy Couture,  Merrell and Uggs, cosmetics, fragrances, and beauty accessories, all fine watches, Smart Value items, selected special sale events, Beauty Salon, Restaurants, Store Services, Gift Cards.

Extra 15% with New Lord & Taylor credit card: Excludes All Fine Watches, diamond solitaire rings, designer jewelry and special event promotions in Fine Jewelry, Ugg,  Smart Value items, Limited-Day specials, selected special sale events, L&T Outlet Store, Last Take Clearance Zone Merchandise, Beauty Salon, Restaurants, Store Services, Gift Cards.

My personal goals have now been met: Awareness is spreading like wildfire and adipose disorders patients are connecting more than ever- they no longer have to be alone in their suffering. FDRS has a great professional website that can be modified as the organization’s needs change. The medical community’s recognition of adipose disorders is slowly beginning to change. And….the 3rd Annual Midwest FDRS Conference is already in the planning stages (for 2011). If you missed this last Midwest Conference, please stay tuned to future announcements of the next one! It will be spectacular!

It is only through the hard work, dedication, and sheer stubbornness of a caring group of people that these goals were realized.

It is now time for me to step down as President/Director and let FDRS be taken to the next exciting level. My resignation has prompted the following changes to our Board:

I am proud of my role in the formation and development of FDRS; I have personally never seen such a dedicated Board of Directors and patient base. Keep in mind, the FDRS Board is growing! There are also committee positions and state rep/ambassador positions open. Please comment below if you are interested.

I will continue to actively support and promote FDRS; it is a great organization that has nowhere to go but up!

Kudos to all of you!

Sue

(Susan Grimshaw)

HOW CAN I EAT A SANDWICH ON THE RAD DIET?

I will admit that the thing I have the hardest time with is “no wheat” especially at lunch, when I prefer a sandwich.  Since I do not have gluten sensitivities (as confirmed through a biopsy done during an endoscopy), I do still eat wheat; but I try to keep it to whole grain breads, pita, and wraps, and limit the quantity as best I can.  I read labels in search of lower carb options and to ensure there are no hydrogenated fats in the bread I buy.  There are also potato and oat bran breads on the market that have low/no wheat, and other gluten-free breads can be found at some stores.

So assuming you might still eat a sandwich now and then, but you can no longer eat ham, turkey, cheese, or regular mayo on the RAD diet…what do you do?  Here are some of my tricks for easy, flavorful, low-fat sandwiches.  I eat a LOT of chicken, but now and again, I crave variety.  Many of these tips would work for a salad instead of a sandwich, too.

1. First and foremost, I always keep cooked boneless chicken breasts or unbreaded chicken tenders on hand, and slice them thin for sandwich meat (I cook enough for 2-3 days at a time).  If you don’t have time to cook chicken, some canned chicken brands are 98% fat free, so it is good to have a few in the pantry for an easy chicken salad.  I also keep fully cooked chicken strips and unbreaded (“naked”) nuggets in the freezer all the time for quick microwaving.  Costco is a great resource for all of the above chicken options (fresh, canned, and frozen).

Use any of the following for spreads and toppings with cooked chicken:

a. Veggies of any type are a great way to add flavor and nutrients to a chicken sandwich—roasted red peppers, sliced cucumbers, sautéed mushrooms, and of course, lettuce and tomato.

b. Mustard, from plain yellow to spicy brown, is a RAD-diet compliant condiment.

c. Sprinkle the chicken with Adobo seasoning (Mexican seasoning with onion, garlic, salt and other spices).

d. Spread mashed avocado or guacamole on the bread (I do this along with the Adobo).  Remember that avocadoes are high in fat, but it is the heart-healthy monounsaturated fats (MUFAs).

e. Mix dijon or honey mustard and cranberry sauce together for a low-fat, sweet and spicy spread.  (Watch the sugar, if diabetic).  Either whole berry or jellied works…just depends on your texture preference.  I stock up on Ocean Spray Cranberry Sauce when it goes on deep discount around the holidays!

f. Pesto mixed with a tiny bit of olive oil mayonnaise makes a great Italian spread (great time of year to make pesto if you are growing your own basil).

g. Hummus adds flavor and protein to a sandwich

h. Frank’s Buffalo Wing Sauce (great in a whole-wheat wrap with chunks of chicken, lettuce, and carrot matchsticks, along with a drizzle of low fat ranch dressing).  A little goes a long way to add great flavor.  This is also great on a salad instead of a sandwich.

i. Teriyaki and/or hoisin sauce (great in a wrap with chunks of chicken, lettuce, carrot matchsticks, even sugar snap peas or bean sprouts).   Don’t overdo the sauce, as it is soy-based and high salt.

j. Curried Chicken Salad—mix chicken chunks with celery, chopped walnuts, halved red grapes, and a mixture of olive oil mayo, curry powder, salt, and pepper to taste.  Curry is a great antioxidant.

2. Occasionally I treat myself to chicken cold cuts, when I just need an easy solution and a break from cooking lunch everyday.  Plus my spoiled cat is addicted to them! Oscar Mayer Deli Fresh, Hillshire Farms, and Dietz & Watson all sell pre-packaged low-fat chicken cold cuts.  I try not to eat them too often because of the salt content and other preservatives.  In fact, recently an article appeared on the RealAge website that reported that high consumption of processed meats is linked to shorter telomeres.  If you follow Dr. Oz, he is always talking about telomeres—the protective coverings on your DNA that keep your cells young.  It is believed that the sodium, cholesterol, saturated fat, nitrates, and nitrites in cold cuts lead to inflammation that shortens telomeres and can age you up to 3.4 years with high consumption.

3. Morningstar Farms makes a great frozen spicy black bean burger, also sold at Costco.  One of these makes a tasty and filling meatless sandwich in just 2 minutes in the microwave.  Eat them plain or spread a little avocado on them, and serve on toasted bread.

4. Canned or Pouch Tuna.  Use as little olive-oil mayonnaise as possible, or mix with olive-oil based Italian salad dressing instead.  Throw in some chopped celery, finely chopped cucumber, carrots, capers, or onions for crunch.

5. Chicken Burgers—Aldi used to sell a delicious low fat spiced chicken patty (uncooked, unbreaded) that was a great sandwich option.  Unfortunately, I can no longer find it in the Chicago suburbs.  I am told that Trader Joe’s has a healthy cooked chicken patty option, but have not yet tried it.  I am also planning to experiment with making my own ground chicken patties.

6. Salmon Burgers—most supermarkets now carry frozen salmon burgers, which make a healthy lunch or dinner option.  I tried a small pack and found them to be too fishy for my taste, but will try some other brands before giving up.

7. PB&J—if you read the label on peanut butter (including some national brands of natural peanut butters), there are hydrogenated fats.  However, I have found both peanut butter and almond butter (at Costco, of course!) that are simply just ground nuts with no added oils.  You want to be careful with the calories, but these items are allowed on the RAD diet.  So if I need a quick sandwich, every now and again I make a PB&J sandwich with one of those nut butters and a low-sugar jam.

8. Egg salad or a “fried egg” sandwich are good options to add occasional variety, as long as you don’t have a cholesterol issue.  I just “fry” two eggs over easy in a non-stick pan with no butter or oil at all, and serve on toasted bread.  If I have more time, I make a traditional egg salad with olive oil mayo.

9. A Grilled Portobello Mushroom makes a great sandwich, as seen on many restaurant menus.

10. Roasted or grilled veggies can be made into a filling vegetarian sandwich option, and now is a great time to experiment with all the flavors from your garden.

As you can see, there are lots of ways to be creative with homemade sandwiches that are less processed, lower-fat, and flavorful.  If you are eating at a restaurant, you may not be able to control all the ingredients, but ordering a grilled chicken sandwich, and making sure to ask for the “sauce” on the side is a good way to take control, as many special sauces have a mayonnaise base.

Another trick I like to employ at lunch to add more veggies to my diet and to fill me up without reaching for salty snacks is this.  I buy V8 100% vegetable juice (low sodium version, if available), pour it in a bowl and heat it for 1 min. in the microwave.  I then eat it like tomato soup.  It is healthy and only 35 calories per 6 oz serving.  If I am having it with a salad, sometimes I throw in a few croutons or crumbled corn tortilla chips.

So now you know all about my sandwich secrets…and my Costco obsession!  What do you do for lunch?  Share your ideas for flavorful, healthy, RAD compliant sandwiches and lunches so we can all try new varieties.

If you enjoyed this article, you might also enjoy:
Following the RAD Diet

RAD Diet 2:  What’s for breakfast?

From Carole:

I have never been one who was completely comfortable with change. Changes, for me, have always brought challenges, some great and some small. With time, I have been able to accept even the most difficult of changes in my life and gone on to find happiness and contentment. However, I must confess I have run aground when it comes to a peaceful acceptance of having a fat disorder.

I always knew something was wrong. There had to be a reason I never felt quite right even though doctors told me I was healthy despite carrying extra pounds. The signs and symptoms that gave me pause for consideration were chalked up to various perfectly explained reasons, but never felt like the right fit to me. Doctors kept telling me I just needed to lose weight, exercise and everything would get better.

Here it is 30 years later and I am still being told the same thing by most doctors, BUT now I know what is wrong. I have a fat disorder. Lucky me…but at least the “enemy” has a name these days. I have learned to pace myself(most of the time), knowing that when I am attempting to cook, clean or try to live some semblance of a normal life and I get “noodle legs” that it is time to sit down to keep from falling down. Having a fat disorder forces you to prioritize and often the choices you have to make are fraught with emotions.

• Do I want to lie in bed, have to ask my husband to bring home dinner or fix his own just so I can go visit friends or do I want to take care of him?

• Do I have the stamina, legs to walk where I need to go, or enough energy to attend my child’s or grandchild’s graduation, dance recital or wedding or a friend’s funeral? And if I do go, what price will I pay later?
• Is there anything I HAVE to do tomorrow if I use up all of my energy today so I won’t be able to even get out of bed?

As you can see, having a fat disorder forces a lot of decision making and careful planning, although I’m sure you know that old saying by poet, Robert Burns…”The best laid plans of mice and men often go awry”.

Even with meticulous planning, some days the disease wins no matter what. Finally after a decade plus, most of the time, I can accept the chaos with laughter, the disappointments and the losses with a bittersweet smile, but it’s been a long road getting here.

I have cursed, researched, raged against the world, researched, cried, researched, despaired, researched, discussed, researched, become depressed, and researched some more trying to understand the what’s, whys, where’s and how’s nearly to the point of being consumed by this disease. It has been a mentally exhausting process and occasionally I digress, the demon still rears its ugly head when I have nothing left and something I want or need to do presents.

I still get angry. I guess this will always be a struggle as long as I have a functioning mind. I have compared having this disease as something similar to having partial paralysis…my mind is willing but my body won’t cooperate. Unfortunately, I can’t do physical therapy and regain function. I certainly would if I could, but I fear that I would use up what precious little energy this disease affords me and not be able to do anything else. I have found joy in pursuing other interests that are less physically demanding like painting, reading, writing or living a virtual social life on the internet and when the opportunity arises, enjoying quality time, laughter and good conversation with those I love when they visit. I miss my very active “old life” on occasion but those thoughts don’t come as often now. I am past the grieving. I have been blessed, more than I deserve, with a loving, caring husband who takes everything in stride and never complains. I can’t comprehend how difficult life would be without his loving assistance. I am a strong person, so perhaps I would cope anyway, although surely not as easily nor as well, if things were different.

My friends and family have also been either accepting or silent, with few exceptions and that has made my journey less traumatic as well. I remind myself now, when the demon rears its head, of my many blessings. I remember that I am still on the pointy side of the grass. Tell myself that it could be worse for me and for my family as caregivers, at least I can function however altered that may be. I am grateful for the good times and quietly navigate my way through the bad ones. I assuage my guilt by asking myself a simple question, “would you do it if you felt like it?”

When I can answer yes with no doubt, then I know I am not being lazy. I remind myself that even though I might not look ill, I am and allow myself to rest when necessary as I would expect anyone to do who is sick. I try to be my own best friend, in other words. It all seems to be working so far. I’ve gotten to know myself pretty well and though there is still work to be done, I think I just might get there one day. I plan to enjoy life as much as possible in spite of the challenges having a painful illness may bring. After all, you only get one shot and it boils down to quality, not necessarily quantity and each day is a gift.
Carole Reed

From Tina:

“My Dercum’s diagnosis is fairly new, having been diagnosed just two years ago. As I learn about new symptoms, conceptually I am able to accept that I will slow down physically and reach a point where I cannot do certain things like I used to. The sad truth is that, physically, I am already there. But my brain has not quite caught up to my body. In my head, I still have every bit as much stamina and ambition to tackle tasks as I always did. So I continue to be surprised when I attempt something I used to be able to do easily, and I wind up incapacitated by back pain the next day; or I plan to be able to finish something in a certain timeframe and it takes me twice as long. It is frustrating, because I am not ready to give up my independent lifestyle. That is for “someday”, a future for which I will never be quite ready but which has apparently already crept into my life, with or without my acceptance.”

From Becky:

For all who suffer from a chronic illness or know someone that does:
Today as I took a walk I thought that I would spend a few minutes deciding how to put into words my acceptance of having Dercum’s Disease. I really didn’t think it would take long as I thought that I had long ago accepted my fate and had dealt with it very well. After all…”it is what it is”, right? I then began to question myself; had I really accepted this at all?
The true answer is, yes I have accepted that I am ill. I have accepted that I will not be able to do many things that I had done before. I have accepted that I will always have pain, that my body has become ugly and that my family and friends although loving and supportive will never fully understand the extent of the suffering. Well, that would be simple and to the point, and I kept walking.
As I walked on, I began to look around and really see, enjoy and embrace everything around me. The sun was shining, the birds and frogs singing. The air was filled with the aroma of all the beautiful wild flowers that are in full blossom. I felt more relaxed than I had in ages. As I continued my stroll, I realized that I had accepted my plight, but I had not accepted how beautiful life still is.
I began reflecting on my blessings; my family, old friends and so many wonderful new ones. I’ve always enjoyed the simple pleasures in life and today was one of those pleasures. Today was an awakening. Life is still filled with all the beautiful things that I love. I feel a huge weight lifted and hopefully some denied bitterness gone.
Today, I have accepted my life and I will enjoy and appreciate every minute of it.
So, to Carole and all the other great people of FDRS, thank you for asking this question. It really opened my eyes.
My best to all who suffer…
Becky Shepherd

From Amy:

Acceptance. This is an excellent topic to reflect upon, as having a rare and debilitating disease turns your world upside down and forces you to choose: live with change & limitations, or fight it and not ‘truly live’ life.

It took awhile, and it definitely wasn’t easy for me, but I feel that I finally have accepted knowing that I will be affected by this rare disease for a good part (or all) of my life… there’s always hope! I have to wake up every day and tell myself: “you are here today… make the most of it… don’t look back with regret & don’t look ahead with fear”. That works for me! I know I can no longer have a special education teaching career (which I truly loved); be an active participant in MANY sports, like skiing, tennis, running and softball; have children (due to my specific issues); travel freely; or volunteer at the humane societies, walking dogs & attending walk-a-thon fundraisers. Those things were a very vivid picture of who I was, and I realized that that part of me had to be appreciated and I needed to feel grateful that I had the opportunities for them. Many people do not get ANY chances for such joy and accomplishment, and for what I had, I feel so fortunate. Yes, I miss them, but it is not going to help me live my life happily by looking back at what I lost. I have altered how I do these things… to accommodate my interests with having Dercum’s Disease. Now, I “teach” by educating others (friends, family, doctors, new acquaintances) about Dercum’s Disease and adipose disorders. I feel that is my new calling in what I have been trained to do. I love helping others… so knowing that sharing my information can possibly benefit someone is wonderful. No, I’m not in a classroom… but I am in the real world, making a real difference. I now watch sports, and cheer on others who participate in them. We have many friends who race competitively in various sports, and I enjoy at least being a part of the atmosphere and world of competition. I may not be able to have children, but I can enjoy being an aunt, which I do! Traveling is just done virtually: I collect postcards from any friend or family member who gets to visit a place that I know I won’t be able to- and it’s fun! I get to keep in touch with people AND see the world. I look forward to where I ‘visit’ next when I open my mailbox. I truly miss walking dogs at the local shelters- dogs, and especially helping homeless pets, are a huge part of my happiness. While I do not have the stamina to help that way, I still can donate to rescue groups, adopt or foster a dog, and support others who participate in fundraisers.

I do not look ahead at what I might or might not be able to do or have. It just doesn’t help me TODAY. No one knows what their future holds, so I am no different than anyone else in that respect. I do know I have a challenge to deal with, earlier than expected, in my life, and things will be ‘different’ in my future. But I refuse to let the worries of the disease rob me of my yesterdays, my tomorrows, and most importantly, my today.

This is truly how I feel, and I wish the same happiness for anyone else in such a position. I consider this a type of ‘gift’, in that I can meet people I otherwise would not have; do things uniquely; and view life from a perspective that my healthy friends may not be able to. I have my ‘down days’, absolutely, but I like to think I have many more ‘up days’.

~Amy P.

From Teri Guzman:

Dercum’s Disease has taken my life. I was active, productive, very strong and able bodied. I have always taken good care of myself and eaten a healthy diet and exercised aerobically and with weights. I loved using my body and being strong. I loved being active, a productive person at work and society and with my family and being a good role model for my now adopted daughter .
To be truthful, I don’t think I have accepted, totally, that I have DD or lipedema. I had such profound changes in my body that happened in such a relatively short time that I still have a very hard time believing that I cannot be who I was, with the body and mind that I had. I am now on SSDI. Being awarded benefits was a bitter, sweet victory. I knew that there had been acceptance by “them” that I was as sick as I had been saying I was, but I really didn’t want it to be the way it was. I didn’t ever want to not be able to work or not be able to care for my home and family the way I use to be able to, or not be able to do the activities or use my body the way I use to.

I live one day at a time. I do first things first. I know those are just sayings, but they truly work for me. Mostly, I rely on God. My faith in God is deep and I know that whatever is going on with me is going to be used for a purpose that God knows and that is what I accept.

In a day, I don’t do anymore than is necessary and I rest frequently. If I have to go out, I gear myself up in my mind and go and get it over with, knowing that I will probably be unable to do anything for the next 4 days to 2 weeks and at times longer. I guess that is the part that is planned, the part where you know that if you do this, you will not be able to do this, that, nor the other things. Sometimes, I can build up an energy store where I can do more than two chores in my house per day!

I am very self-conscience about my appearance, but when I go out the door I try to forget about it and just be the person that I am in my heart so that I do not go into a shell and try to avoid people. I do try avoiding stressful people and situations.

And last, which is the greatest blessing that God has given, is that I look to the support groups and those who know, who understand, who feel, who empathize, who are compassionate, and who believe. I also have a couple of good friends that are very supportive.

From Calle:

I am blessed with 3 fat disorders. Aren’t I the lucky one.

I self diagnosed myself for Dercum’s Disease once my lipomas exploded into existence. I took the information to my family doctor and he agreed with the diagnosis. I had/have been on pain meds for many years due to unexplained excruciating pain in my Achilles tendon. In addition I fell in 2004 and shattered my right knee. It had pins and plates and was replaced twice. It still causes me a lot of pain

But I digress. I joined the DD support group and in December of 07 got to see Dr. Karen Herbst in San Diego and she added FML and Lipo-lymphadema to my list of illnesses.

The lipedema diagnosis devastated me. I always hated clothes and wore the least I could get by. To hear I would have to wear compression garments for the rest of my life really threw me. I ranted and raged. And read and researched. And ranted and raved some more.

I finally swam to the top. I got an excellent MLD therapist and an excellent garment representative. I wear my garments every day and I have a lympha press machine that I use daily. It mimic’s MLD.

Acceptance is hard. There are strict dietary recommendations that I have not been able to embrace completely. But I have great support from 2 online groups, from my husband (most of the time) and my doctors.

Every day though I wake up in pain. I have to revisit my acceptance on a regular basis.

Calle living it out

From Sylvia Burleson:

At age 65 I am one of the oldest people using this web site (FDRS) that has been diagnosed with Dercum’s Disease. I was diagnosed five years ago by a new rheumatologist that I visited. I had gone to various doctors over the years starting at age 21 when I first decided to try and find some help for my various symptoms. I was diagnosed with fibrositis at that time. Later the name was changed to fibromyalgia. It was originally called rheumatism. Since I had rheumatic fever when I was six and could not walk for six months my legs and feet always hurt. I remember not being able to keep up with my grandmother walking. My mom had me rub my legs with a glass milk bottle and said that I had growing pains. We did not go to doctors back then unless you were dying.

I went to new doctors once in a while and was only given an antidepressant that helped me sleep. One doctor that I saw about once a year for 10 years gave me E-Aspirin. One of these pills is the same as 10 regular aspirin and I took six a day. Nothing really helped much except PT in a hot physical therapy pool which helped as long as I was doing it. My insurance would only pay for a limited number of visits a year. My DD gradually worsened over the years. Each year brought more pain and limitation of my physical abilities.

Jumping ahead after working until age 60 in terrible pain, I finally retired and decided once again to try to find help. I went to a new rheumatologist recommended by a PT that I saw for several years. He diagnosed my DD. I think he is still the only doctor in my part of my state who diagnoses and treats DD. He is loved by all of his patients..many who have fibromyalgia. I have fibromyalgia also and degenerative arthritis and insulin dependent diabetes, diabetic neuropathy, early kidney failure and early emphysema. My story may not be typical as I have so many other health problems. I suffer from IBS every day and that makes life difficult. Finally finding a diagnosis has meant the world to me. I have many friends on the net who have helped me so much. Once I found this amazing help, it was euphoric to have others to talk to who are dealing with the same set of symptoms I have.

Before having this disease, I was a 5″3″ small frame woman weighing 130 pounds. Now, forty years later I am morbidly obese. The obesity alone has dramatically changed my life. My bones were not meant to carry around this heavy fat. I have a very bad back, a bad knee and my feet are in constant pain. I have a heavy apron of fat hanging from my abdomen and heavy bags of fat hanging from my upper arms. I have a hump at the top of my back that many DD patients have.

I had no trouble with accepting the DD diagnosis. I was just very glad to finally know that what I have been dealing with all my life has a name. It helps so much to know that you are not just another fat, lazy woman bothering the doctors. I read that my own symptoms that I thought were so unique were also being experienced by other DD women I talked to. It was almost unbelievable, at first, that we had so much in common.

I had a dear friend who died of bone cancer. The horrible year she had trying to get an answer for her pain wore her down so badly that she told me she was fine with the cancer as she finally had an answer. Her doctors had also told her to go on a diet and exercise and that it was probably only in her mind.

I have had to accept the limitations of DD. We have no choice but to accept that we can no longer do what we used to do. I have always looked around at other people my age doing things that I cannot do and thought why me? But I have also had friends like my dear friend that died of bone cancer at a very young age and that has helped put DD in perspective. I have other friends with Lou Gehrig’s disease and MS so I consider myself lucky not to have those diseases or to have the task of being a caregiver. If I need to be a caregiver for my husband at some point I will consider it an honor to repay some of his kindness to me. Without him I would need daily help but I have a daughter and grand-daughter who would step forward to help me. I am very lucky to have so much love in my life.

I can’t carry groceries into the house or mop the floor or use the sweeper. My husband does those things but I do as much as I possibly can every day. I find joy and help my loved ones find it too! That is my main job at this point.
Hugs, Grandma Sylvia

From Diane Muffett:

I have been able to, for the most part, accept the limitation that Dercum’s has brought. I’ve had to modify doing many things like shopping by taking shorter trips. My exercise regimen went from working out at a gym to water aerobics to chair aerobics. Honestly the gym is the hardest thing for me to deal with as it had become a big part of my life. I’m now back trying a fat blaster 2 week program to see if it makes any difference – knowing full well it could backfire on me.

I think the key has been to grieve over each thing lost and then find a new thing that is similar but not as strenuous. I would say that I have mostly accepted my limitations but now and then I still rebel and challenge them.

From Cynthia Prentice-Whyte:

I had to think for a while before writing this missive. In doing so I realized that although I have great difficulty in accepting what this disease has done to me, both physically and psychologically, I have come to accept the limitations which this imposes on me in the following ways. I have arrived at a stage of coming to terms with those limitations (despite not liking them) but essentially because I do not want to spend what is left of my life being bitter and angry. Being negative does not help any disease process and I have so many other blessings in life. I hope that others can come to arrive to accept what they may have, even though it is sometimes very difficult. I think that the secret to accepting these physical and emotional afflictions is to try and consider what others may be living through as well. This is never easy when your body is screaming in pain, but it always reminds me of my nursing days when despite trying so hard to help them, there were so many people who suffer with no hope. At least we have hope and we must always remember that.
There are so many ways this disease (Dercum’s Disease) has robbed me of so many things other people take for granted, my mobility, physical well being and beauty, my bodily control and so many more things.
I strongly object to not being able to move the way I would want to. But then I feel guilty because there are so many others who cannot even do what I am able to physically. It is just that, as a young athletic girl, I never imagined that I would not be able to walk around a supermarket to do my shopping. I feel grateful that I do still have some mobility but then I get angry at the pain, which is constant on a certain level and excruciating at other times. It just wears you down and then you get positively nasty with those you love and who do not deserve to bear the brunt of the result of your pain.
I regret that my body is not the shape I have worked hard to try to achieve! But then I think to myself, “Had you not worked so hard to try to keep the muscles going, where would you be now?” I dread to think what size and shape I would be today, when I have to look at – every day – the shape, weight and size this disease has imposed on me. It is not a pretty sight!
Then there are the health problems, which have been a direct result of suffering from this disease. These have been varied and at times, life threatening, but I am still here to fight the fight. Nearly thirty operations with general anesthetics and countless minor interventions some with and others without anesthetics leave their traces on the body and the mind. But I always think of children who are ill when I feel that life has not always been fair on that score. It brings me right back down to earth with a bump. Nobody deserves any disease, and should I drop dead tomorrow – be it from Dercum’s or an accident or any other cause, I have had an interesting and varied life. These kids who suffer so much have not had that privilege and sometimes their disease brings their young lives to an abrupt end.

The real, one and only thing which still makes me angry, after all the years of trying to explain to Doctors and other Medical staff, and the outcomes of this disease is the total lack of professional interest shown by most of them. In nearly thirty years of trying to explain that something was not right, I have been downright insulted, treated as a lazy, fat, slightly neurotic woman of no interest to many of these so-called Medical experts. I have often wondered whether I should question my own sanity. In thirty years, and despite being educated enough to be proficient in explaining the “medical side of things” I can honestly say that only six or seven (out of hundreds) Doctors have taken me seriously and tried to help. That is a sad accusation of the whole of all the medical professions I have seen over the years. If you do not have that specific medical curiosity, then you should not be in one of those professions. As for the insults along the way (one specifically when I was only about 150lbs and pre-medicated for an operation), I heard one nurse saying “Christ another f…….g whale to lift on to the table!” I was so near to tears but I didn’t want her to know I had heard.
Thank goodness I bumped into all the wonderful people I have met through the Internet, especially Carole Reed, Dr. Karen Herbst and the late Dora Maillaro-Tomalonis. They, at least, believed me……………validated my sanity and gave me the courage to fight on again.

*Author’s note:

As you can see, the challenges of coping with an adipose disease are many and the stories are filled with recounts of pain and the loss of normal life all which make accepting the inevitable changes that come with chronic illness a daunting task. I’d like to thank these ladies for their words and their honesty so that others might walk a virtual mile in their shoes toward understanding.

This journey would be much easier for all of us if there was more knowledge about fat disorders in general. Wouldn’t it be wonderful to walk into a physician’s office, tell them your symptoms and have them say, “You have ______, a fat disorder. “ That sounds like a bit of Heaven to me. FDRS is working toward that goal. Please help us spread the word for together we can make a difference.

Carole Reed
Secretary, FDRS

Now my go-to breakfast food has become oatmeal.  Prior to the RAD diet, I had the same tiny canister of oatmeal in the back of the pantry for years, well past its expiration date, and used only for the occasional baking recipe.  Now I buy Quaker oatmeal in a 10-pound box at Costco (only $6.89)!  I have created my own recipe that I call Antioxidant Oatmeal, because I load it with healthy berries and spices that have antioxidants.  I throw in nuts for Omega 3 fatty acids and protein, not to mention that I love the crunchiness.  I have actually grown to crave oatmeal and have learned to create lots of varieties to prevent boredom.   I also appreciate how much more full it keeps me (and regular too, if I can be indelicate for a moment).  It takes just a few minutes to make.

ANTIOXIDANT OATMEAL

1-1/2 cups water

dash of salt (optional

¾ cup oats (Old Fashioned or Quick Oats…not Instant)

small handful of chopped walnuts or slivered almonds

handful of dried or fresh fruit, chopped—Craisins, dates, blueberries, peaches, bananas, etc.

dash of cloves

dash of nutmeg (or substitute Mace or Allspice)

lots of ginger

lots of cinnamon

Stevia natural sweetener, to taste

Almond milk (original or vanilla)

Bring the water and salt to a rolling boil.  Add oats and stir frequently.  When about half cooked, add nuts and fruits (if berries, add after cooking is complete to prevent overcooking).  Continue stirring until oatmeal reaches desired consistency.  Transfer hot oatmeal to a bowl; add spices, Stevia, and a few tablespoons of almond milk.

Cinnamon and ginger are great for you, and it is hard to add too much.  However, cloves and nutmeg are very strong spices, so go easy until you find the amount you prefer.  Another option is to use pumpkin pie spice that you can buy pre-mixed (it basically contains these same spices).  I keep Diamond walnuts, slivered Fisher almonds, fresh and frozen berries, Craisins, chopped dates, and Sun-Maid golden raisins on hand all the time, so that I can make different combinations everyday.  For the almond milk, I prefer Silk (refrigerated half gallon), but Blue Diamond Almond Breeze and Almond Dream are also quite good.  You could also experiment with adding natural maple syrup or raw honey as a sweetener.  Add a cup of green or oolong tea to your morning routine and you are upping the nutrition factor even more.  Here are some of my favorite flavor combinations for the oatmeal:

Blueberry Almond (freeze some blueberries now while they are cheap and plentiful)
Peach Almond (or nectarine…with or without skins)
Banana Walnut (great way to use an overripe banana)
Cranberry Walnut
Chopped Dates and Walnuts
Apple Raisin Walnut (without the apple skin)
Strawberry Almond

I recently read an article on the RealAge website (by Drs. Oz and Roizen, citing the work of Dr. Roberta Lee and The SuperStress Solution), and they confirmed my suspicions that eating this actually makes me feel better.  Apparently walnuts, oatmeal, and tea boost the production of the brain’s “feel-good” chemicals and fight the effects of stress.  The oatmeal contains tryptophan, a building block of the feel-good chemical serotonin, and lots of fiber to keep you feeling full.  The nuts contain Omega 3’s, which nerve cells and brain chemicals thrive on, and which are thought to help stave off depression.  All this, plus cholesterol lowering properties and antioxidants too!  I am wondering why I ever thought ready-to-eat cereal was so healthy when this is clearly a better choice.

There is some debate over whether those with gluten sensitivities can eat oatmeal.  According to information I found online, oats themselves do not contain gluten; however, they are often grown and processed along side gluten-containing wheat or rye, and a very small percentage of people cannot tolerate even that small amount of cross-contamination of the gluten.  If you are concerned, there are varieties of gluten free oatmeal available.  Also, if you are diabetic, you may want to pay attention to the carbs not only in the oatmeal, but in the add-ins (for instance, Craisins can be high in sugar).

I hope you will give Antioxidant Oatmeal a try.  Once you get into a routine, it takes just 5 minutes to prepare.  In fact, the worst part of the whole process is cleaning the pot! (Soak it immediately and it will be easier later).  On those days when oatmeal doesn’t sound appetizing, you can still eat eggs (try to eat no more than 3 eggs with yolks per week because of the cholesterol).  And sometimes I do still eat boxed cereal, but I try to keep my cereal choices to those that are wheat free, such as Corn Chex, and I use almond or rice milk.  Also check out Carole Reed’s recipe on this site for a delicious berry shake.  That could be a healthy breakfast alternative on some days too.

Top o’ the morning to ya!   What’s your favorite breakfast that works with the RAD diet?

Tina

There has been a tremendous response to the blog, “Living with Lipedema”…thank you!

After reading through all of the comments, Sue Grimshaw, Dr. Herbst and I have seen a common thread and think a follow up blog is in order. So many have said that the hardest part of dealing with Lipedema, aside from the pain, is the difficulty in getting others to believe that a disease causes their obesity and further, that the diseased fat cannot be dieted or exercised away. I mentioned in the blog that there is, in fact, published data to support this statement, so now Dr. Herbst has kindly offered to provide citations to that data. She is the best. We all hope this will help you convince the disbelievers that your disease is real and help you obtain the validation and treatments you need.

So without further adieu, here is that info from Dr. Herbst:

There are no randomized clinical trials on diet and weight loss in women with lipedema. Even Dr. Foldi does not describe an inability to lose weight from areas of lipedema in his Chapter on Lipdedma (Foldi, E., and Foldi, M. (2006)

Lipedema, in Foldi’s Textbook of Lymphology (Foldi, M., and Foldi, E., Eds.) pp 417-427, Elsevier GmbH, Munich, Germany).

Studies are needed to find out if low carbohydrate (Atkin’s type), vegetarian or low wheat and dairy diets induce weight loss in women with lipedema. It is also important to demonstrate how diets affect areas of lipedema.
Many published papers, however , have simply reported difficulty and the inability to lose weight from areas of lipedema. These reports are from investigator’s experience with women with lipedema:

1. Fife CE et al., Lipedema: A Frequently Misdiagnosed and Misunderstood Fatty Deposition Syndrome. ADV SKIN WOUND CARE 2010;23:81-92; quiz 93-4.
2. 
   
3. Finder M and Loveless J. Case of the Month: May’s diagnosis – Lipedema. Johns Hopkins Advanced Studies in Medicine. Page 93
4. 
   
5. Child AH, Gordon KD, Sharpe P, Brice G, Ostergaard P, Jeffery S, PS Mortimer. Lipedema: An Inherited Condition. Am J Med Genet Part A 52A:970–976.
6. 
   
7. Warren AG, Janz BA, Borud LJ, Slavin SA. Evaluation and management of the fat leg syndrome. Plast Reconstr Surg 2007; 119: 9e.
8. 
   
9. Cornely M. Lymphology. Blackwell Verlag GmbH • www.blackwell.de •1610-0379/2006/0407-0564.
10. 
    
11. Wold LE, Hines, EA, Allen EV. Lipedema of the legs: A syndrome characterized by fat legs and edema. Ann Internal Med May 1, 1951 vol. 34 no. 5 1243-1250.

One paper reported an attempt to try different diets in women with lipedema and reported a lack of weight loss from areas of lipedema. Unfortunately, the weight loss trials were not outlined in detail but authors reported that a low salt or low protein diet did not result in weight loss in lipedema:

1. Stallworth JM, Hennigar GR, Jonsson HT, Rodriguez O. The chronically swollen painful extremity. A Detailed Study for Possible Etiological Factors. JAMA 228:1656-1659, 1974

While these citations from Dr. Herbst do not say specifically that it is impossible to lose weight in Lipedema areas, they do report difficulty in doing so. Since research and understanding of Lipedema is lacking, we offer the following patient accounts, from various websites, supporting the theory that weight loss is not possible in the Lipedema areas:

• Lipedema, which is also known as painful fat syndrome, is abnormal symmetrical swelling due to accumulations of fat and fluid located in the tissues just under the skin of the hips and legs, down to the ankles but not extending to the feet. Also there are fatty bulges on the outer surfaces of the thighs. [1]This inherited condition occurs almost exclusively in women and usually develops during puberty. Additional causes of this condition include a hormone component, microcirculation disorders, and inflammation.

• Read More…

• Obesity due to gaining excess weight is a common complication of lipedema. As more weight is gained, additional stresses are placed on all of the body systems.

• Read More…

• There is no known “cure” for lipodema. Because it is not a medical condition

• Read More…

• I suspect I’m not the only lipedema patient who also has food “issues,” stemming in part from being told by society and doctors for years that my body was bad and wrong and that it was all my fault. So if you tell me I need to avoid dairy and tomatoes, my response is going to be to order a pizza. Not the most adult way to go about things, but there it is.

• Read More…

• Lipedema is one of the most under diagnosed diseases in America.  An estimated 6 to 12 million American women are presently undiagnosed.   Lipedema sufferers seek medical attention as early as onset of puberty yet find no healthcare professional trained to recognize the disease.  Obesity is the number one misdiagnoses.

• Read More…

• Lipedema is frequently misdiagnosed as lymphedema or chronic venous insufficiency, or patients are told they are “just fat.” Thus, many patients endure treatments that will not improve their condition or embark on aggressive dietary programs that fail to result in weight loss in the legs.

• Read More…

Conclusion: More research is greatly needed to unravel the mysteries of this painful fat disease called Lipedema.

Carole Reed
FDRS, Secretary