IMPORTANT NOTICE–WALK UPDATE

 The Lupus Foundation of America, Connecticut Chapter is unfortunately announcing that the annual Walk to End Lupus Now: West Hartford scheduled for Sunday, May 15th is canceled for reasons that are beyond our control.

We want to sincerely apologize for any inconvenience that this may bring to you, your friends, or family members. The Connecticut Chapter would like to thank all of you for your constant support and efforts in raising awareness to helps us solve the cruel mystery that is lupus.

If you have already registered and raised donation funds for the walk and would like a refund you can do so by contacting info@lupus.org. Please include your name, contact information, and the amount that you have donated in the email.

If you have questions please call 1-800-558-0121 or email info@lupus.org.

Table for Two: Living (and Eating) with Lupus

We are back again to share another fun, healthy, and quick recipe for a breakfast on-the-raw-ground-turmeric.jpg.653x0_q80_crop-smartgo or a mid-day pick me up! We know it isn’t always easy to make healthy choices when you are busy and on the move or not feeling well enough to cook; but we wanted to make it a little bit easier for you to make the right choice with today’s recipe.

Turmeric Smoothie:

There are so many health benefits in Turmeric. This ancient root has been used for centuries for its healing properties. When it comes to living and eating with lupus this is one of the ingredients that you want in your kitchen. It has been used to reduce inflammation, arthritis, depression, cholesterol, and so much more. With all of these benefits we had to use it in our recipe today.

Below are the ingredients that you will need: images (1).jpeg

  • 1 cup of coconut milk
  • ½ cup of mango
  • ½ cup of banana
  • ½ tbsp. of turmeric
  • ½ tbsp. of cinnamon
  • ½ tbsp. of ginger
  • ½ tbsp. of chia seeds

Blend, and enjoy!

The 12 Best Pieces of Non-Medical Advice People with Lupus Have Received

Click here to read the initial article!

Although each and every case of lupus affects it’s patient differently, typically the Invisible-Illnesses-8symptoms include: fatigue, skin rashes, swollen and painful joints, unusual hair loss and a high fever. Some people with lupus experience brain fog, kidney problems (or issues with various other internal organs), or even may be susceptible to premature heart disease. Because lupus is an autoimmune illness, it comes and goes in the form of flares and periods of remission. It’s an extremely unpredictable and cruel disease. With a lupus diagnosis, comes  numerous prescriptions hidden within medical jargon and statistics that are hard to understand. TheMighty.com and the S.L.E. Lupus Foundation to ask their community for the best non-medical advice they have received regarding their lupus. Here’s what they had to say:

  1. “Don’t fight the tiredness!” – Lisa Walker
  2. “Get involved in a support group.” – Tonya Brown
  3. “Never feel bad for saying ‘no’ to something.” – Meagan Burks
  4. “Listen to your body.” – Lesley Watkins
  5. “With lupus, you ‘don’t look sick’ so if a doctor doesn’t listen to your complaints or take you seriously, get another opinion. It’s your body and you know when something is wrong with it! Don’t let doctors brush your symptoms off and make you feel like a hypochondriac.” – Tammy Wendt
  6. “It’s good to take naps.” – Pamela Rich
  7. “Do what you can when you can.” – Vanessa Johnson
  8. “Know your limits.” – Lucy Piccoletti
  9. “You are not your disease. Do not allow it to overcome you or define who you are as a person. You are more than just your illness.” – Mary Rebecca Frazier
  10. “Do not be afraid to change plans if you just can’t do it.” – Jen Laura Lopez
  11. “My favorite advice has been ‘eat pure food, drink pure water, get enough rest, take gentle exercise, and most importantly keep a happy mind.’ This advice reminds me to be gentle, compassionate and wise towards myself.” – Chogma Kelsang
  12. “Be kind to yourself and rest when your body is screaming out for some.” – Victoria Sinclair

28 People with Chronic Illnesses Describe what ‘Brain Fog’ Feels Like

            A symptom often associated with chronic illnesses such as lupus, is brain fog: 493x335_lupus_brain_fog_videofeelings of mental confusion or lack of mental clarity. Brain fog is one of the most common symptoms of lupus patients. Often times, its hard for loved ones and caretakers to fully understand the impact brain fog can have. If you are unaware of its indicators, you may assume its similar to that groggy feeling you experience before that first cup of coffee. However, its effects extend well beyond that. Oftentimes, brain fog is hard to understand unless you yourself have experienced it. Those who have experienced brain fog may also question whether their reactions or feelings are normal and whether others who experience brain fog feel the same way. When experienced in conjunction with a lupus diagnosis, brain fog can also be referred to as “lupus fog”.

            Themighty.com polled Facebook readers with chronic illnesses to learn what experiencing brain fog can really be like. The thought behind this was to gain a better understanding of symptoms of chronic illness to properly treat and assist those experiencing brain fog in the future. After all, there is no better education than awareness. Here are the answers readers came up with:

 

  1. “My mind feels as slow and achy as my body, struggling to take each step.” — Barb Silvestro
  2. “Imagine not sleeping for three days and then trying to understand quadratic equations.”— Melissa Austin
  3. “If someone is speaking to you, all you hear is Charlie Brown’s teacher. You know the person is talking, but you cannot decipher the words or the meaning.”— Lori Hughes
  4. “Imagine being shaken awake at 3 a.m. from an extremely deep sleep and asked what type of pizza is your favorite. You might give an answer, but because of your confusion, the answer might not be the ‘best’ answer, nor the one you would normally give.”— Ross Caynes
  5. “Imagine losing your keys five times in five minutes, absent-mindedly pouring yourself three bowls of cereal, struggling with remembering what you need to do next, forgetting the majority of the words you know when you need to say something and having an audience for the whole trainwreck that is your new reality.”— Paula J Frey Slater
  6. “You are swimming through JELL-O.”— Samantha DeGroot
  7. “I like to think of it as a library card catalog from the old days. I know I used to have the card in that drawer (that information in my brain), but the card is gone or misfiled now.”— Alyssa Schultz
  8. “Brain fog is like stumbling around in the dark with no clear path out. It’s like your brain being trapped in quicksand constantly.”— Rachel Johnson
  9. “Brain fog is needing a reminder to remind you what your reminders are for.”— Selena Marie Wilson
  10. “It’s literally like being in a fog. In fog, you can’t see far enough ahead of you. With brain fog, you can’t think far enough ahead.”— Kelly McCoy Hickey
  11. “Brain fog is like, y’know, what’s that word? Maybe, if I Google that term, um, that I used last week when I saw my doctor. Was that last week? Let me look on my calendar. Hmm, where’s my iPhone? Did I leave it in my pocket when I went out early? Was that today or yesterday? Oh, wait… Darn, I used to be so good with words. I can remember my SAT scores and got almost 800 on the verbal test, but now I can’t remember words. That is brain fog.”— Angela Oddone
  12. “Brain fog is like having the memory span of a goldfish. It’s hard to plan for the future when you can barely get through what you are doing now.— Sara Cohen
  13. “Brain fog for me is feeling completely lost in a familiar place.”— Cherie Rendon
  14. “It is not just stumbling on a word but losing your entire train of thought and sometimes even feeling as if English is not your native language.”— Judy Pamer
  15. “Brain fog to me is like being stuck in mud and trying so very hard to pull yourself out. It is exhausting!”— Penny Royer
  16. “It’s as if you’re walking around with an invisible eye mask; you should be able to see clearly but you cant.”— Hayley Gardner Shimanek
  17. “It can feel like drowning without the water. Like you are mentally struggling to get back to the surface, blurry vision and muffled sound included.”— Tifa Carlyle
  18. “It’s like your brain is an extremely messy desk and you can’t find anything, but you know you put it there.”— Julia Ann Lange
  19. “It feels like I have cotton candy in my head.”— Crystal Angela Sada
  20. “Brain fog is like a poor Wi-Fi signal — it’s half there, it’s half not, and you have no idea when your ‘browser’ will load!”— Arianne Gaudet
  21. “It feels like you’ve had one too many shots of tequila.”— Desiree Carbeil-Fortin
  22. “It is like you have a fish bowl over your head and cannot fully understand what is going on around you.”— Tiff Paige Miller
  23. “[It’s] like trying to think through a brick wall. The words, meanings, processes — all the things — are just on the other side where you can’t reach them”— Faith Merryn
  24. “It feels like you have been awake all night completing an assignment and after handing your assignment in, you have no idea where you parked your car.”— Kate Eastman
  25. “It’s like playing Charades or Pictionary with yourself. You know the word or name you want to use but you can’t get your brain to come up with the right answer.”— Sandra Martorano Tentler
  26. “Thoughts come into your mind, but they don’t stick. They dissolve away quickly and are gone.”— Chronic Beauty
  27. “It’s like a really bad hangover without the fun night.”— Bec Brown
  28. “It is like your brain is a puzzle, and the pieces are scattered all over the place.”— Bekr Usque Ad Finem

[For the article on themighty.com, “28 People with Chronic Illness Explain What ‘Brain Fog’ Feels Like to Them”, click on the themighty.com link above!]

Which Type of Yoga is Best for You and Your Lupus?

A lot of people think yoga is only beneficial for increasing flexibility, however yoga has so yogamany other benefits. Yoga builds muscle strength, prevents cartilage and joint breakdown, increases your blood flow, lowers blood pressure, boosts your immune system functionality, and much more.

Each case of lupus presents slightly differently. Symptoms can develop slowly over time or come on suddenly. Cases range from mild to severe, and most sufferers experience “flares,” which are periods during which symptoms become worse. The most common symptoms of lupus are:

  • Fatigue and fever
  • Joint pain, swelling and stiffness
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches
  • Confusion or memory loss

 

vinyasaIt may be difficult to motivate yourself for a little bit of exercise when you are dealing with lupus, but studies have found that exercise can reduce the risk factors of cardiovascular disease in lupus patients. Even if you only manage to make it to one or two yoga classes a week, you will feel relief when you increase the amount of time you spend moving and stretching.

If you are not showing symptoms or flaring, Iyengar yoga or a gentle Vinyasa, flow, are two great choices for yoga styles. Both of these types of yoga focus on alignment, and will put your joints through their full range of motion. Keeping joints moving will maintain their flexibility. Iyenger yoga focuses on using props to perfect poses and will help you to create space in your joints. This can help relieve the aches and pains associated with lupus and improve flexibility.

Yoga has many benefits for those who suffer from lupus and are experiencing flares or are meditationentering remission. The deep relaxation of Restorative yoga will activate the parasympathetic nervous system and boost your immunity. This type of yoga will also increase your breath and body awareness and help you to create healthy sleep patterns.

All types of yoga are helpful for pain management and stress reduction, both of which are important for those who suffer from lupus. Stress and depression are known to trigger flare-ups of symptoms, so it is important to keep yourself in check to not worsen any symptoms.

Yoga is not the only low-impact exercise that benefits people who are battling lupus. Other low-impact exercises you may want to try if yoga is not for you include: low impact cycling, swimming and walking among others! Remember to ask your physician before beginning an exercise regimen!

Table for Two: Living (and Eating) with Lupus

Immune-Boosting & Anti-Inflammatory Pizza Recipes

Boost your immune system while eating pizza? Didn’t think that was possible? Well here are two delicious and nutritious, immune-boosting and anti-inflammatory pizza recipes the whole family will enjoy. Feel free to mix and match the two crust recipes with the two topping recipes for more tasty dinner ideas.

Recipe #1

Brown Rice Crust Ingredients231294-Veggie-Pizza-Spanish-Recipe.jpg

  • 3 cups cooked brown rice, cooled
  • 2 egg whites, beaten
  • 1 cup shredded mozzarella cheese, divided
  • Vegetable oil cooking spray

Toppings

  • 1/2 cup sliced red and green peppers
  • 1/2 cup sliced broccoli
  • 1/2 cup halved Brussel sprouts
  • 1/4 cup tomato sauce (no sugar added)
  • 1 roma tomato, sliced thinly
  • 1 tablespoon olive oil
  • 2 tablespoons balsamic vinegar
  • 1 1/2 teaspoons Italian seasonings, divided
  • Salt and pepper, to taste

Directions

  1. Toss the topping ingredients together and roast in the oven for 30 minutes at 350 degrees and then set aside.
  2. Combine rice, egg whites, and 1/3 mozzarella in a large bowl and press into a greased 12 inch pizza pan.
  3. Bake at 400 degrees for 5 minutes.
  4. Then, put the pizza together by combining the pizza sauce and 1/2 teaspoon Italian seasonings in a small bowl and spreading the mixture over the rice crust.
  5. Layer the 1/3 cup mozzarella cheese, Brussels sprouts, sliced tomatoes, and peppers. Then top with the remaining cheese and sprinkle 1/2 tablespoon olive oil on top.
  6. Bake for an additional 10 minutes at 400 degrees.

 

Recipe #2

Crust Ingredients1b6314ef67b747a6201dfa5d253b3726.jpg

  • 3/4 cup flax seed meal
  • 1 teaspoon baking powder
  • 1/2 teaspoon salt
  • 1 teaspoon dried oregano
  • 1 1/2 tablespoons olive oil
  • 1 whole egg
  • 1 egg white
  • 1/4 cup water

Toppings

  • 1 avocado, mashed
  • 1/4 cup toasted almonds
  • 1/3 cup black olives
  • 1/4 cup spinach
  • 1/3 cup sliced tomatoes

Directions

  1. Start by preheating the oven to 425 degrees.
  2. In a large bowl, mix the dry crust ingredients together and then add the wet ingredients, making sure to mix well. Let sit for about 5 minutes, until thickened.
  3. Spread mixture onto a pizza stone or pan and bake until cooked through, about 15 to 18 minutes.
  4. Then spread the avocado onto the crust and add the toppings. Bake until everything is cooked through, about 8 to 12 minutes.

What to do as a Patient if your Medical Team Fails you

Harvest-of-Tempe-Medical-Marijuana-Dispensary2

When dealing with any type of medical condition especially one as relentless as chronic pain, you should always seek the proper medical attention from professionals. Chronic pain can be unbearable; causing one to lose sleep, become anxious, or simply, lose the ability to do certain things you could do before. Your medical team is supposed to be reliable, supportive and responsive, however, this is not always the case. An important question we wish to address is: what do you do as a patient if your medical team fails you. This could mean a number of different scenarios such as receiving the wrong diagnosis, undergoing the wrong type of treatments, or the doctor feeling that there is nothing else that can be done. Here are some helpful tips to help you overcome these scenarios.

Chronic Pain Relief Through Exercise

One of the key tricks to deal with chronic pain is to try and focus on something else to takeexercise-stretch your mind off the pain. What better way to do this than a little exercise? The muscles are the most common target of lupus. Exercise helps to strengthen muscles, helping prevent re-injury and further pain. Even just taking 20 minutes out of your day for a quick walk can make the biggest difference in your health.

Join a Support Group

No one will ever fully understand the pain that you’re going through except for the people who are experiencing what you are. You are not alone. Support groups can be very beneficial because you can hear first hand experiences and gain some tips from how they cope with their pain. Getting counseling can help you learn to cope better and help you avoid negative thoughts that make pain worse.

Find Ways to Distract yourself from the Pain

When pain gets to be too much, it may hard for you to take your mind off of it. Moist heat soothes muscle and joint pain better than dry heat. Soaking in a hot tub, sauna, or whirlpool, using a moist heated towel, or taking a hot shower can be helpful. Forms of meditations such as focused breathing, low-impact yoga, and Tai Chi can be effective tools for pain management. These methods can help with relieving pain and stress that can make the chronic pain unbearable.

ona_challenges0713_app_427460Seek New Physicians

If you wish to seek new physicians or specialists to consult during your health journey, contact your primary care physician first for any referrals. If you are seeking a rheumatologist in Connecticut, you can reach out to the Lupus Foundation of America, Connecticut Chapter for a recommendation in your area at office@lupusct.org.

 

For more information, click here and here!