In a surprising announcement earlier this month, the Treasury Department decided to postpone the employer mandate, as it is called, in the Affordable Care Act (ACA) until 2015. One of the key provisions of the law, the mandate requires employers with over 50 employees to either offer health coverage to their workers or pay a per-employee penalty. It seems nobody saw the decision coming and speculations on the consequences ran rampant. Thankfully, the shock has worn off and implementation of the ACA is moving forward with few impacts. Read full story.
LRI $2 Million for Lupus Medical Education in 2014
A federal spending bill for fiscal 2014 approved by the U.S. Senate Appropriations Committee provides $2 million to continue a federal lupus provider education program conceived by the Lupus Research Institute (LRI) in collaboration with the federal government. If enacted, this appropriation would bring the total secured to fund this program to $6.6 million.
The Senate Labor, Health and Human Services and Education appropriations bill allocates 2014 funding to continue the current federal lupus education Lupus Initiative
launched this May by the Office of Minority Health, Office of Women’s Health and the U.S. Surgeon General to improve diagnosis and reduce health disparities. As described in the report language accompanying the bill, the Initiative is “intended to engage healthcare professionals, educators, and schools of health professions in working together to improve lupus diagnosis and treatment through education.”
“The Lupus Research Institute and its National Coalition of patients and families have worked tirelessly over many years to gain recognition among members of Congress of lupus as a pressing health issue,” noted CEO Margaret Dowd. “We thank the Coalition for working with us to secure the funds every year to make the launch and continuation of the
Lupus Initiative possible.”
The Senate bill provides $30.955 billion, an increase of $307 million, to fund biomedical research at the National Institutes of Health (NIH). In addition, the Senate committee urges collaboration among many other federal agencies on efforts to expand and intensify genetic, clinical, and basic research on lupus.
“We also are extremely gratified by the support this bill provides in protecting scientific advances and assuring strong support to the National Institutes of Health,” noted Ms. Dowd. “To this end, we co-hosted a Senate briefing this spring to drive Congressional funding for lupus research and sponsored a lupus expert to testify at a recent appropriations hearing on the importance of robust NIH funding.”
Members of the Senate and House appropriations committees will negotiate a final conference committee bill later in the fall to set the ultimate funding levels for 2014.
Get Ready, Set, GO!!!
I would argue that both are probably true, and that we might use the latter to our advantage. Much like entropy causes disorganization and chaos to occur around us, when we feel ill, our appearance tends to suffer. On the days I get up stiff and in pain, slow moving and mentally groggy, I may stay in my PJ’s, hair disheveled, mascara smears under my eyes, face unwashed, teeth unbrushed until noon, nervous the whole time that a neighbor might stop by and catch me looking like that. Those of us who work outside our homes do not have that luxury, and that may be a good thing.
In our recent support group meeting, we did makeup “makeovers” on each other, and I noticed a distinct difference between the “before and after”, not just in appearances, but in the tone of the group as a whole. We smiled more, had more to say, were more lively and animated, and had more fun. It was as if our personalities perked up when our appearances improved and we took the time to enhance how we looked.
I recently learned that agoraphobia is common in lupus. I wonder if it is really more of a reluctance to leave our homes, rather than a fear or phobia. I know I am reluctant to go out if I look terrible, and feel that cleaning up, putting on decent clothes, makeup, fixing my hair, etc. takes more energy than I can muster. Even going to the grocery, I am afraid I’ll run into someone I know and they’ll wonder what on earth happened to me. I must really be sick to go out looking like that!
I think we internalize our image in the mirror. If we look awful, we feel awful, and vice versa. It becomes a vicious cycle that feeds the feeling and appearance of illness. I want to break that cycle, and present to myself and others an image of health, wellness, happiness, and vitality.
So my personal “homework” for the next month is to be cleaned up, dressed, groomed and ready for the day by 9 a.m., whether I feel like it or not. It will likely perk me up, reduce my anxiety, and make it easier to get out and get things done while I have some morning energy. If a friend stops by, I can answer the door without embarrassment and wanting to hide. If someone calls to go to lunch at the last minute, I can accept without saying it will take me an hour to get ready. I can walk by a mirror without wanting to cringe, feel more alive and ready to tackle my work for the day. Just as a good cup of coffee gets us going in the morning, I think some attention to our appearance does the same.
Part of my homework is also setting a goal and planning a morning activity to kick-start my day. I feel best when I am productive, engaged, getting things accomplished and meeting my goals. Wallowing like a walrus just isn’t my style. At least it wasn’t before lupus. I need to work hard to be the true me, the Type A lady who gets things done and has something for “Show and Tell” at the end of the day.
I needed a serious pep talk. I hope it rubbed off on you if you needed one too. We truly do need one another to boost our spirits, get our engines revved up, keep us moving forward at more than a snail’s pace, make us smile and laugh, be sociable and outgoing, not just in personality, but literally in going out, getting out, not being agoraphobics. Let’s try to cross that symptom off the list for lupus!
Reprints with author’s permission only.
Reaching out to teens with lupus
Lupus Colorado is pleased to announce that Michael Sauter is serving as a facilitator on our Lupus Colorado for Teens Facebook page. Michael currently works as a research assistant at the Aurora Research Institute. He earned his psychology degree from Colorado State University. In addition, he has experienced his share of challenges with lupus and is able to relate to young people with the disease.
You can read more about Michael and how his teens years were impacted by lupus.
Eating healthy, simply, with lupus
Linda Kwiatkowski, RD, CSG, CDE
Are you tired and don’t have time to cook? Or like to cook but don’t have the energy? Lupus can cause fatigue. With the many tasks everyone attempts to complete in a day, cooking may not be on the top of your priority list.
I am sharing some ideas for quick meals that are lower in saturated fat since lupus can increase the risk of heart disease.
Here are a few quick ideas for meals:
- Choose a Greek or light yogurt and add fruit, like your favorite berries.
- Microwave instant oatmeal with added raisins and cinnamon.
- Try a tortilla with an egg or peanut butter and a little jam.
- Add low fat cheese* to an English muffin and warm in the microwave.
- Top a romaine tossed salad with black beans, cheese and serve with crackers.
- Spread tortilla with refried beans, top with corn and cheese, heat. Add salsa.
- Top whole wheat bread with canned water packed tuna or chicken, add diced tomatoes and sprinkle with cheese. Heat and serve.
- Top a microwaveable baked potato with canned chili* and cheese or top with cottage cheese.
- Make a meal out of soup; choose a base of tomato or meat broth, add vegetables and a starch like rice, barley, noodles or potatoes. For protein add white or black beans, meat or chicken to the soup.
- Canned or homemade chili can be a great meal with some low fat cheese on top, crackers and skim or 1 % milk.
- Make your own version of taco salad. Start with a big salad; add cooked lean beef or ground turkey, mixed with onions and peppers. Add low fat cheese and tortilla chips on the side.
- Stir fry supper: in just a little hot oil, stir fry leftover rice, add assorted pre- cut vegetables from a frozen package or from produce section. Cook until tender-crisp. Add low sodium chicken broth and sliced skinless chicken breasts. Add spices to taste.
- Cook ahead when you can and make enough for two meals. Freeze half of it. This can work for spaghetti sauce, chili, soups, casseroles.
- Buy rotisserie chicken, skin it and warm it up as is, or use the chicken meat in soups, chicken salad, or on a salad.
- Many stores now have an entire meal in a package ready to cook when you don’t have the energy to chop vegetables or plan a meal.
- Use convenience foods to your advantage: frozen vegetables, precut poultry, canned beans, instant brown rice, bags of fresh chopped vegetables, instant oatmeal, or healthy versions of canned soups.
- Use quick cooking methods like stir frying, broiling or microwaving.
- Plan ahead and use leftovers from dinner the next day for lunch.
Cookbooks and Websites:
“Quick and Healthy “ Recipes and Ideas -For people who say they don’t have time to cook, Volumes 1, 2 and 3 by Brenda Ponichtera
Meals in Minutes by the American Heart Association
Nutrition Content Information:
Healthy Eating and Living:
*Examples of low-fat cheeses:
There are many options. Look at labels for a “light cheese”
Good tasting light cheeses include: Cabot cheddar, Denmark’s Finest Harvarti., Kraft Swiss, Jarlsberg reduced fat Swiss style cheese, and Sargento string cheese. There are many others.
*Examples of low-fat canned chilis:
- Amys and Fantastic Foods offer a vegetarian chili. It is easy to add lean ground turkey or ground beef for a quick healthier version.
- Bear Creek – just add tomato paste or sauce, and water.
- Womens Bean project sells a delicious chili starter.
Linda is a Registered Dietitian who works for Kaiser Permanente Colorado.