Thanks to Mariam Girgis for sharing this great video that helps us find the humor in living with a chronic illness!
Archives for September 18, 2015
One of the most important parts of coping with a chronic illness like FSGS or Nephrotic Syndrome is being part of a community. Having a group of peers that can relate to what you are going through is a necessity when living with CKD. However, since these diseases are rare, finding a community to call home can be difficult. Luckily, NephCure gives you a variety of opportunities to connect with others and find comfort in a community of your peers! From informative educational workshops to fun-filled walks, there are so many ways for you to be a part of the NephCure family! We listed some of these opportunities below, so sign up for something interesting today and take an important step in your kidney journey.
NephCure Community Cafes
NephCure Community Cafes are FREE educational workshops held in-person across the country. This year, the topic of each workshop is “Live Your Best Life with Nephrotic Syndrome” and includes a panel with a nephrologist, a nutritionist, and a social worker. We have upcoming workshops in Austin, Baltimore, Nashville, Albuquerque, Ann Arbor, St. Louis, and Philadelphia! See the full list and REGISTER for a FREE workshop today!
NephCure walks are all about community support, family fun and raising funds to find a cure. More than fundraising, NephCure walks provide support for those lives that have been touched by Nephrotic Syndrome and FSGS. CLICK HERE to find a walk near you, or start a walk in your area by emailing firstname.lastname@example.org.
Peer to Peer support is important to NephCure, because we feel that patients and caregivers connecting with others and sharing lived experiences is an integral, complimentary part of coping with Nephrotic Syndrome and FSGS. This initiative allows you to ask for a “kidney mentor”, or allows you to join (or start!) a support group with people in your area. There are also online communities- such as NephSpace– that help you connect to others virtually. Learn more about Peer Connections HERE!
Webinars are a great way to connect with patients from all over the world! These FREE events focus on different topics and include a guest speaker. Upcoming topics include Being Your Own Advocate, The Unique Adult Experience, Sibling Support, and more! Check out all of our virtual programs HERE and register today!
Other Ways to Get Involved
There are unlimited opportunities for you to join our community, so check out our website to find what interests you. From research opportunities to galas, there is an opportunity for everybody to be a part of the NephCure family- CLICK HERE to see them all!
Yoga is a wonderful way of life, but it is also a great exercise routine. Practicing yoga can reduce stress, improve breathing, and increase strength. Every yoga pose is unique and works a different set of muscles, thus giving you a full-body workout! The breath patterns that come with a yoga pose reduce stress and anxiety, thus letting your mind relax while your body exercises. Yoga poses also increase blood flow to specific areas of the body, which can promote healing.
Below are three yoga poses that can promote good kidney health while also reducing stress and working your muscles. Remember, you should always talk to your doctor before starting an exercise routine! Yoga is also not a substitute for any of your medicines, but rather acts as a complement your therapies.
How it works: Cobra pose stretches the abdominal muscles and engages back muscles, thus promoting blood flow to the areas around the kidneys.
How to perform the pose:
- Lie face down with your palms on the floor right underneath your shoulders -INHALE
- EXHALE- Keeping your neck in a neutral position, use your arms to slowly push your upper body off of the floor until your arms are almost straight, keeping your waist, hips, and legs on the floor, yet actively engaged (HINT push your feet into the floor to engage your lower body)
- Keep your arms softly bent and your neck in a neutral position while thinking about opening your chest and squeezing your shoulder blades together; INHALE and EXHALE 3 times
- Slowly lower yourself to your original position with an EXHALE
How it works: Boat pose engages your abdominal muscles and gives a little stretch to your back muscles, thus promoting blood flow to the area around your kidneys.
How to perform the pose:
- Sit on the floor with your hands slightly behind you, fingers pointing towards your feet. Your feet should rest comfortably on the floor in front of you, with your knees slightly bent. INHALE
- EXHALE- lean slightly back, using your hands to support you, and begin to lift your feet off of the floor, keeping your knees pressed together. Raise your legs as high as you feel comfortable and INHALE
- If you are able, lift your arms at the floor. They can go straight in front of you (one arm on each side of your legs) or they can be raised above your head.
- If you are able, straighten your legs and think about taking your toes to the ceiling.
- Wherever you are, INHALE and EXHALE 3 times.
- Slowly lower your arms and legs with an EXHALE and return to your original position.
Seated Twist Post
How it works: Twisting poses employ a “wringing” technique common to yoga practice. The idea is that by twisting, you “wring out” the old blood from that area, and new, freshly oxygenated blood replaces it and promotes good health.
How to perform the pose:
- Sit on the floor in a comfortable cross-legged position.
- Leaving your left leg where it is, move your right leg so that your foot is flat on the floor next to your left thigh and your knee is pointing towards the ceiling. Sit up tall, pushing the crown of your head towards the ceiling. INHALE
- EXHALE- sit up very tall and twist your upper body to the right (away from your leg), keeping your lower body as still as possible. Place your left elbow on your right thigh to help with the twist, and place your right hand on the floor behind your back
- Look over your right shoulder, INHALE and EXHALE 3 times while holding this pose.
- EXHALE- and slowly untwist, and return your right leg to its original position AFTER your upper body is straightened out. REPEAT on the other side.
Yoga Anatomy, Leslie Kaminoff. 2007