Let the Countdown Begin to our May Awareness Campaign!

Grab your purple and get ready to advocate, May is Lupus Awareness Month! The Lupus Foundation of America, Connecticut Chapter devotes the entire year to advocating, raising awareness and taking action, and this May, we want your participation in our May Awareness Campaign. We have several events occurring in the month of May designed to advocate and take us further in our mission to find a cause of and cure for lupus.

Lupus Advocacy Day at the State Capital

Advocate for yourself and all those living with lupus at the State Capitol Building in 10402455_10152049658601044_2893218501512668758_nHartford during the first week of May! Let our state legislature know how you feel and inform them about what it is like to live with the cruel mystery known as lupus.

World Lupus Day (May 10)

Join others all over the world and take a pledge to devote May 10 to raising lupus awareness and educating others on such a cruel disease.

@mx_476 (6)Put On Purple (POP!) (Friday, May 20)

Wear purple on Friday, May 20 to show your support for lupus awareness! Encourage your coworkers, family, and friends to wear purple and share them on social media using the hashtag #PutOnPurple!

Walk to End Lupus Now: West Hartford (Sunday, May 15)

Join LFACT for a half-day of food, fun and friendship with activities for the whole family at our signature event, the Walk to End Lupus Now: West Hartford at Blue Back Square! Walkers can stroll the 1/4-3 mile route to show their support for lupus warriors everywhere.

Tips to Increase Productivity When Battling a Chronic Illness

 

  1. Plan Your Activities in Advance. Although this is not always possible, do this as best as you can. And try to be realistic when planning, have a good idea of what you can get accomplished in a day without exhausting yourself.
  2. Take Breaks. Going from one task to the next is a great way to burn yourself out productivity-highlightfrom exhaustion. Work on each task for what feels like a manageable period of time. This ‘manageable amount of time’ varies between tasks and differs for each person but can be discovered through trial and error. Be sure to pay attention to your pain levels and how you are feeling. This will help you know when you’ve reached your limit.
  3. Don’t Wait Too Long. Chances are as the day progresses, your energy level decreases and your pain level increases. Waiting until the end of the day to work on something you really wanted to accomplish can set yourself up for failure. Try moving this task to an earlier time of the day.
  4. Break Chores Down Into Smaller Tasks. Completing all your tasks at once or all in one day can sometimes be challenging, but chances are if you break the chore down into smaller tasks, you will be able to better manage it.
  5. Don’t be too hard on yourself and don’t forget to celebrate your small victories, no matter how tiny they may be. Remember to be gentle with yourself; you are doing the best you can!
  6. Make a To-Do List. Whether you’re battling a chronic illness or not, chances are you got to the end of your day with tasks leftover to complete. Don’t beat yourself up over this! Celebrate what you did accomplish and put the unfinished tasks on a to-do list for tomorrow!
  7. Relax. It is so important to take the time at the end of each day to unwind and relax. This is especially true for people with a chronic illness! Don’t forget to give your body the rest it needs! It’s important to recharge and continue your productivity the next day!

10 Things People With Lupus Wish Everyone Knew

  1. We’re not lazy – Lupus’ most common symptom is fatigue, sometimes getting out of the house, or even out of bed is just as difficult as the average person moving a boulder.
  2. A “good day” is a day we can function “normally” – lupus is a disease of flares and remissions. Some days flares take over our bodies and getting rest is the only possible means of getting by. We don’t want to cancel plans, call out of work, or miss appointments, but sometimes listening to our bodies and taking a break is what’s best for us to do.
  3. The medication can be worse than the disease – Current medication for lupus is often plagued with terrible side effects that can be, and a lot of the time are, even worse than the symptoms of lupus in the first place.
  4. The “common cold” is hell – Having lupus means avoiding 4_065_ColdFluRescuethe common cold by all means. Colds are much, much harder to fight when it comes to a person with lupus, our immune systems are already attacking our own healthy organs and tissues, and bringing a cold into the mix is all the more trouble.
  5. We may not look sick… – Varying degrees of lupus effect all individuals differently. Some patients may visibly appear sick, others, and most, will look as if nothing is wrong on the outside but on the inside our bodies are in a lot of pain and we are fighting tooth and nail just to get through it.
  6. Lupus doesn’t only effect women – Although Lupus is a disease that primarily effect’s women, men are not off the hook. Men can develop lupus too, yet, women make up 90% of lupus patients.
  7. Our symptoms are not all alike – While one person may experience skin rashes, another may be experiencing difficulty with their kidney’s, or swollen and painful joints.
  8. Lupus is life changing – Lupus patients often have to leave behind activities, hobbies, or sports that we used to enjoy before being diagnosed with lupus. Some of our favorite things just become too hard to do.
  9. Lupus can be fatal – Unfortunately, for some, lupus can be a very life threatening disease. This threat makes our fight for finding a cure all the more important.
  10. I have lupus but lupus doesn’t have me – Despite all of lupus’ conditions and limitations lupus patients are strong willed. We do our best to live healthy and happy lives; support groups and the lupus community bring more and more victims, relatives, and friends together in the fight against lupus to eventually end the cruel mystery.

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Anti-Inflammatory Winter Recipes

Anti Inflammatory Hot Chocolate

via iquitsugar.com

Ingredients

  • 1 tablespoon raw cacao powder.
  • 1/2 teaspoon cinnamon.
  • 1/4 teaspoon dried ginger.f8792ae0bddf2085d132014bc109618f
  • 1/4-1/2 teaspoon dried turmeric (depending on your taste).
  • pinch of cayenne pepper.
  • pinch of cardamom (optional).
  • teaspoon rice malt syrup, to taste (we recommend no more than 1/2 teaspoon).
  • pinch of sea salt and freshly ground black pepper.
  • 1/2 cup coconut milk, warmed.
  • 1/2 cup water.

Directions

  1. Add raw cacao powder, dried spices, sea salt and pepper into a standard mug.

    2. Fill mug halfway with boiling water and rice malt syrup and stir until powders dissolve.

    3. Pour in warmed coconut milk and stir to combine. Serve.

Chicken Tumeric Vegetable Soup

via fearlessdining.com

 Ingredients

  • 6 cups water
  • 32 ounces low sodium chicken broth
  • 2 large chicken breasts, raw
  • 1 tablespoon turmeric7559355449bd72dcd4b17d14a146104a
  • 2 teaspoons cumin
  • 2 teaspoons salt (I added more later so you may want to taste and add salt as needed)
  • 1 cup peas (frozen or fresh, not canned)
  • 1 large onion, diced
  • 4 parsnips, chopped
  • 2 large potatoes, diced
  • 1-2 zucchini, diced
  • 1½ tablespoons olive oil
  • cilantro for garnish

Directions

  1. In a large soup pot, heat olive oil on medium heat.
  2. Add onion and cook 3 minutes.
  3. Add other vegetables and cook 5 minutes until they soften.
  4. Add raw chicken breasts, water, broth, and spices.
  5. Cover and bring to a boil.
  6. Once boiling, reduce heat to medium low and cook until the chicken breasts are done.
  7. Remove the chicken and with two forks, shred the chicken.
  8. Return the chicken shreds to the pot and simmer for 10 minutes so the flavors soak into the chicken.
  9. Garnish with cilantro.

Anti- Inflammatory Tumeric Truffles

Via mindbodygreen.com

 

Ingredients

  • 1/2 cup soaked, pitted dates
  • 1/2 cup soaked walnuts
  • 6 tablespoons raw cacao powder5a76c3f11c2ac6e61649f970f7c567fa
  • 3 tablespoons coconut oil
  • pinch of good salt
  • pinch of vanilla powder (optional)
  • 1 tablespoon orange zest

Topping

  • 2 tablespoons turmeric powder
  • 3 tablespoons hemp seeds

Directions

  1. Blend all ingredients in a food processor or blender until combined. Place in the fridge for about 10 minutes to harden.
  2. Roll into balls, and into turmeric/hemp mixture until coated. Chill for 15-20 minutes before serving.

Fundraising Tips for Spring 2016 – It’s Never Too Early to Start!

Here at the Lupus Foundation of America, Connecticut Chapter office, we have been gearing up for our Walk to End Lupus Now: West Hartford (May, 15th), and we need your help in reaching our fundraising goal!

Check out these fundraising tips to help you make the most of your Walk to End Lupus Now experience!

Social Media.

P10402455_10152049658601044_2893218501512668758_neople often underestimate the power of social media posts. One post or comment reaches your entire social network! You’ll be surprised at who is willing to support you and donate to a good cause!

Matching Gifts Program.

See if your company has a matching gift program and double your money! Programs vary from business to business, but most programs double or even triple the donation. To determine if your business has such a program, ask your Human Resources Department. If your company does have a Matching Gifts program, obtain copies of the necessary forms. Read the forms carefully and be sure to fill it out completely. Most forms are divided into two parts: a section for the donor/sponsor to complete and a section for the benefitting organization (LFACT) to fill out. Bring your Matching Gifts form and check to the check-in on Walk Day, or mail it to the LFACT in advance. Be sure to tell your Team members about Matching Gifts-perhaps their employers have a program too. Ask donors if their company has a Matching Gift program, also!

10420275_10152049656781044_349986779055573379_nSponsor Yourself.

Get the ball rolling and be the first to donate to your Walk team! Potential donors will be more likely to donate if they see you’re willing to put your own money towards the cause!

Contests.

Contests are a great way to boost fundraising and healthy competition within your team! Come up with some fun ideas for the winning (or losing!) team that are fun and motivating! Also, think of individual incentive prizes to reward individual efforts in fundraising!

Need even more inspiration?! Check out our “Never Too Early to Start Fundraising” and “DIY Fundraising Ideas” blog posts!
For more information on the Walk to End Lupus Now: Hartford County on Sunday, May 15th and a list of our other upcoming spring events, please click here.

Senate Moves Forward on Innovations for Healthier Americans

Lupus activists in conjunction with our national office, the Lupus Foundation of America and affiliated chapters, have been working hard for more than a year on a bill called the 21st Century Cures Act, which passed the U.S. House of Representatives in July 2015.  And the Senate is finally ready to take action.  Like the 21st Century Cures Act, the Senate Innovation Initiative has the potential to improve the drug development process and bring new and vital treatments forward for people with chronic diseases like lupus. Unfortunately, they are unable to move a big bill like the House, but earlier this week scheduled a series of meetings in February, March and April where they will consider a number provisions under their Innovations effort separately.  While not ideal, scheduling these meetings continues the momentum of 21st Century Cures.

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Don’t forget to join LFACT for our own legislative advocacy efforts at the Connecticut State Capitol in May! Stay tuned for details!

The 21st Century Cures Act, spearheaded by Congressman Fred Upton (R-MI), provides an additional $8.75 billion in funding to the National Institutes of Health; establishes a public-private partnership to collect data and improve our understanding of diseases; supports patient-focused drug development; and modernizes the design of clinical trials and their review process.

While the nine provisions that the Senate will consider on February 9th do not directly impact people living with lupus, the Foundation maintains our support of the Senate’s broader innovations work.  We will continue our advocacy efforts with the Senate to ensure the meetings in March and April consider provisions that will directly impact lupus drug development.  We will continue to keep you updated as this moves forward this year, and thank you in advance for your continued support.

Sunscreen in the Winter? How the Sun Effects Lupus Patients Year Round

Despite the frigid temperatures and frost on your car in the morning, it is still necessary to protect your skin from the sun’s harmful UV rays. Sunlight exposure cansun screen often worsen lupus symptoms and for that reason, you may already lather on sunscreen as a precaution during the warmer months. What you may not know is that even during the winter months, sun exposure can still provoke a flare.

Information from vitamindcouncil.org details further the relationship between sunlight, levels of vitamin D, and having lupus. “The Vitamin D council informs us that “many studies have shown that there is a link between vitamin D and lupus” and that “researchers have found that in winter months with low sunlight, people with lupus are more likely to have active symptoms, as well as more likely to have low levels of vitamin D. People with lupus are also more likely to have more flares during low sunlight months compared to high sunlight months.”

Getting enough vitamin D is an important component of maintaining a healthy life. Studies have linked losunw levels of vitamin D with depression and fatigue, which Lupus patients are already at risk for. It is important that throughout the year you go outside and get sunlight as “researchers think that not getting enough vitamin D may also be an environmental trigger that increases the risk of having a flare up and increases the chances of developing lupus”. More importantly for those with sensitive skin or who notice discomfort from sun exposure, it is advised to use sunscreen both during winter months as well as the warmer seasons such as spring and summer.

It is important to note that it is difficult to pin point flares to sun exposure as Dr. Betsy Blazek-O’Neill explains “No two lupus patients are alike, and tolerance to sunlight can differ widely from one person with lupus to another.” Lupus.org Help and Resources and it is always important to check with your Doctor before exposing yourself to extended periods of sunlight or using sunscreen on sensitive skin.

Find more information on Vitamin D, Sun Exposure, and its relationship with Lupus on the Vitamin D Council’s website: https://www.vitamindcouncil.org/health-conditions/systemic-lupus-erythematosus/#_edn10