Yoga: My Best Fibro-Friend

Just over three years ago, I went to my doctor’s office with one question:  How do I get off some of these drugs?  I mean, I felt reasonable, but I always had that drug hang-over feeling.  In addition, I was finding exercise a challenge.  I danced from the time I was three and stopped once the fibro symptoms first really started to show.  It was so frustrating.  I could barely make it around the block.

My doctor said, “You have my permission to try anything you want.  Fibro is ever changing and we won’t know what works for you until you try it out.”  He did warn me–no weird supplements, herbs, etc. without first consulting him.  But, massage, reiki, different types of exercise were all on the table.

I instantly thought of pilates and yoga…mostly because they were so similiar to dance.  I bought my first yoga DVD, and my journey began.  At first, I used books and videos.  Then, I moved into a regular class and private sessions.  Before I knew it, I had an entire yoga room in my house.

Yoga is magic to me.  Here’s the coolest thing about it:  yoga comes to you, you don’t go to it.  What does that mean?  You don’t have to be a pretzel to get the benefits of yoga. You get to just be you–fibro fog, IBS, fatigue included.

There are many styles of yoga available, but I highly recommend the Iyengar style for those who have fibromyalgia and arthritis.  Iyengar  allows you to use props, and lots of them.  Can’t make it into a downward facing dog?  No problem!  Use the wall to prop your heels on.  Or use a pillow to rest your head.  Having a super stiff day?  Just do poses on the floor instead of standing.  Tender points in your hips giving you trouble?  Select poses that give you a gentle stretch.  Foggy?  Use poses that allow your head to rest. Genius! 

No matter where fibro takes me, yoga is aways there to soothe my muscles, give my mind a chance to forget the pain, and surrender to the peace of knowing that I’m caring for myself.  Yoga maintains me so the flare ups don’t come as often, it’s a remedy when pain first starts to emerge, and it’s a way out of the dreaded flare up.  Yoga is my best fibro-friend, always comforting and supporting me, no matter where I am.

With a regular practice, I have been able to reduce all of my medications in half and have not had to add any more.  I have more energy, fewer flare ups, and more strength than I’ve had in years.  And dance?  Yes!  I started teaching again this summer.

Interested in trying out yoga?  Here are my suggestions:

1.  Clear it with your physician.

2.  Learn about fibro-friendly yoga.  Here are my suggestions:

These two books are my favorites.  Both show lots of modifications!

·       Yoga for Arthritis:  The Complete Guide by Lauren Fishman (http://www.amazon.com/Yoga-Arthritis-Complete-Loren-Fishman/dp/0393330583/ref=sr_1_2?s=books&ie=UTF8&qid=1281640873&sr=1-2)

·       BKS Iyengar Yoga:  The Path to Holistic Health by BKS Iyengar  (http://www.amazon.com/B-K-S-Iyengar-Yoga-Holistic-Health/dp/1405322357/ref=sr_1_2?s=books&ie=UTF8&qid=1281640960&sr=1-2)

This is my favorite website.  A subscription is $10 a month and you get unlimited yoga videos.  Start with practices labeled ‘restorative,’ that means easier, relaxing, and slower paced.

·       My Yoga Online:  http://www.myyogaonline.com/

3.  Get some props so that you’re comfortable and don’t overdo it.  I suggest:

·       Blankets

·       Pillows

·       Books or blocks

·       A strap or belt

·       Yoga mat

·       Open wall space

·       A chair

You can purchase these things on www.amazon.com or a speciality site like http://www.huggermugger.com/.  You can even purchase things at a discount store.  But, you don’t have to!  Look around the house to see what you can use.  If you like it, then consider making a purchase.

4. Most people start with a home practice.  However, nothing takes the place of a good yoga instructor!  Look for an Iyengar studio and a teacher who understands fibro. Try starting here:  http://www.iynaus.org/.

Want to know more about Iyengar?  Try this site: http://www.bksiyengar.com/

Together, we can overcome. 

Kate

Read Kate's Bio

Together, We Can Overcome

Whenever I drive past Steak ‘n Shake, I am reminded of a dear gentleman I had the privilege of spending time with several years ago. Before coming to IUPUI, I worked at the Alzheimer’s Association of Greater Indiana. In my last few months there, I had a series of events featuring an unusual national speaker–retired psychologist Richard Taylor, PhD. At the time, Richard was in his early 60′s and had been diagnosed with dementia, probably of the Alzheimer’s type a few years earlier at 58. He knew what the diagnosis meant, but resolved that for as long as he possibly could, he would speak up about Alzheimer’s and advocate for those with the disease.

Richard Taylor and Family

In our first emails coordinating the week-long visit and tour of Indiana, he pushed me to add more and more events to the schedule. He wanted to reach out to every person he could every moment he was here. There was a true sense of urgency to inspire others to act on behalf of those with the disease, caregivers and professionals who give their hearts to help. But there was one caveat:  we had to go to Steak n Shake. Living in Texas, but having grown up in Indiana, he was determined he had to eat at Steak n Shake at least once more while he still could.

During his visit, I watched over him like an overbearing mother as we traveled throughout state. His memory was still fairly intact, but I knew all too well what can happen with this disease. Still, I could not keep up with him! Even while dealing with the unpleasant symptoms of Alzheimer’s, his desire, motivation and energy never failed. One night, I called the hotel lobby because I couldn’t reach him. Every staff person I talked to at the hotel knew all about the disease, how to help those with the disease, and how to advocate because of Richard (turned out he was in the pool counseling a young couple that just had a parent diagnosed). Yes, even the housekeeping staff knew how to advocate for Alzheimer’s. Richard was fearless, but always compassionate, understanding, and appreciative of his time.

When we finally made it to Steak ‘n Shake, he took every bite with extreme gratitude. This simple pleasure meant so much to him, knowing that one day, he would forget growing up in Indiana, Steak ‘n Shake, and even how to eat a hamburger. This was a true example of living in the moment.

Richard sent me a lovely thank you email when he returned to Texas. I keep a piece of it at my desk to remember the power of one person. He wrote, “Stand up! Speak up! Do not become a victim of your own silence! Speak for yourself and those who will follow. Ask carers and friends to do the same. Today will never be here again. Time is of the essence! Use it wisely!” We chatted for months about advocacy, until one day, the emails just stopped coming.

There is no reason we can’t take Richard’s advice and apply it to fibromyalgia and arthritis. He kept telling me one day, I’d do for fibro and arthritis what he’s doing with Alzheimer’s. I always gave a little giggle and knew I would never reach the depth he has. But, his words still inspire me. I only wish I could call him and thank him, but he would not remember who I am, what our time together was like or even that Steak n Shake moment.

I’m asking you to consider Richard’s story as one we can model. Even on many of the worst pain days, we have the capacity to send an email. We have the ability to read what the Arthritis Foundation is doing in terms of advocacy efforts and respond. We can advocate, we can pull together to drive research, funding, and eventually a cure. Those who haven’t found their voice yet, those to come, and the youth affected by these issues are depending on us.

Together, we can overcome. 

Kate

Kate's Bio 

Life with JRA

At the age of 17, I was diagnosed with Systemic Juvenile Rheumatoid Arthritis. Before my diagnosis, like many others, I thought arthritis was something only elderly people had. But, after three months of pain in all of my joints, a massive weight loss, and sleeping up to 18 hours a day, I quickly learned that arthritis is a real possibility at any age.

It started normally enough – a dull ache in my knees. I’d convinced myself it was a late growth spurt (just a few more inches!), but when the pain started to spread to my ankles, toes, hips, shoulders, elbows, wrists, hands, fingers, neck, and pretty much everywhere else imaginable, I told my parents who took me to the doctor.

My family doctor told me early on that he thought I had JRA, but he sent me for blood work and with a recommendation to see a specialist. I had the first six vials of blood taken that day… I stopped keeping track of how many they’d taken after I hit 200. While my symptoms started in early April, my diagnosis didn’t come until July. Since my rheumatoid factor never popped positive, the best way for diagnosis was to eliminate every other possibility. I’d been hospitalized and taken multiple trips to Riley Hospital for Children. I’d been through blood cultures, body scans, and bone marrow extraction. I was tested for Lyme disease, leukemia, lymphoma, and host of other diseases I can’t pronounce. When the diagnosis finally came, I was grateful to have a name for it, but it didn’t make it any easier.

While I was sick, I lost 15 pounds. Once I got on a combination of medicines, I gained 12 pounds in 10 days – a nightmare for a senior in high school. While I felt better, I was still exhausted and achy. I had to relearn how to live again, and find my limitations and boundaries.

Studies say that over 300,000 children in America live with arthritis. That’s a conservative estimate, as no recent studies have been conducted on the actual number of children with arthritis and related immune diseases. Additionally, millions of young adult live with arthritis.

This is something that affects my life each and every day. I’m a 27-year-old English teacher who has to wake up early for work so my joints can get used to moving after sleeping. But, I’m one of the lucky ones. On a day-to-day basis, my arthritis only affects me in the mornings and evenings, unlike so many others who have been crippled by the disease.

Register Now!

A few summers ago, I had the privilege to attend the National Juvenile Arthritis Convention in Hershey, Pennsylvania. There, I was able to meet so many children and young adults who live with this disease. They are some of the most extraordinary people I’ve ever met.

One day, on a break, I went to the pool at the hotel just to be outside. There, a group of children from the conference were swimming while their parents were in sessions. As two boys splashed around, one said to the other, “We’re the luckiest kids ever!” And the other little boy said, “I know!” Tears immediately welled up in my eyes. These are kids who have to get weekly injections of biologics in order to control their arthritis so they can walk. These are kids who have faced ridicule from classmates who didn’t understand why they sometimes had to use wheelchairs. These are kids who face immense amounts of pain each and every day of their lives. These are kids who are amazing. 

There are so many things I’ve learned from having arthritis. I’ve learned how to enjoy everyday, even when they’re not perfect. I’ve learned how to make JRA a part of my life without letting it define me. And, slowly, I’m learning to accept support from others. The Arthritis Foundation has made all of this possible. I can’t wait to see what the Kids Get Arthritis Too event can do for others like me. 

Kids (and Teens!) Get Arthritis Too Family Day
Saturday, March 26, 2011
9 a.m. – 1 p.m.
Marriot – Downtown South Bend 
http://AFKidsGetArthritisSB.kintera.org/

- Angela
 Read Angela's Bio 

 

Meet Kate Nicholson Our Central Indiana/Indianapolis Arthritis Walk Blogger!

Name:  Kate Nicholson

Hometown:  Indianapolis, IN

Arthritis Condition: Fibromyalgia, osteoarthritis, and chronic bursitis

Diagnosed in:  Fibromyalgia in 2003, osteoarthritis and chronic bursitis in 2009

How has arthritis affected your life:  My diagnoses made me more driven to lead a healthy lifestyle and reach out to others who have the same issues.  I have a regular yoga practice and eat well, participate in research studies, volunteer with the Arthritis Foundation, and blog about my experiences.  It has been life changing, but it has made my life better and more meaningful.

Kate & boyfriend Brian at Indy JBR

How long and in what capacity have you been connected to the Arthritis Foundation:  In 2009 and 2010, I volunteered on the Indianapolis Jingle Bell Run committee.  In 2010, I also joined the Indianapolis Arthritis Walk committee as the volunteer coordinator.  In 2010, I mentored a group of graduate students who produced promotional material for Bone Bash.   In 2011, I am the Indianapolis Arthritis Walk event vice-chair.

Why do you volunteer with AF:  I understand how difficult it is to live with these conditions.  It is very important to me to help others find their way to a healthy and meaningful life.  The Arthritis Foundation gives our communities an avenue to convene, share information, to build awareness, and provide research dollars to find a cure.

Advice do you have for others:   In between the pain, lack of energy, and constant doctor’s appointments, it’s easy to feel like your life isn’t the quality you want it to be.  It doesn’t have to be less than what it used to be or not up to your expectations.  We have to make adjustments, and there’s nothing wrong with that.  The journey of living with arthritis related conditions can be as beautiful as you want it to be.  Find a good medical team, a good support team, treat your body well, and prioritize to make the most out of what you do have.

A little about you:  I am the Program Manager for the Indiana Public Health Training Center at IU School of Medicine Department of Public Health.  I’m also faculty in the IUPUI Department of Communication Studies and teach health communications, public speaking, and public relations.  I’m currently working on my PhD in Curriculum Studies.  I make time almost daily for yoga in the Iyengar style.  I have a crazy household on Eagle Creek with two Australian Shepherds, Furry Murray Fish Head and Rock Star Roxy Hart, and a cat, Princess Aurora the Diva Cat.  In addition, my significant other, Brian, and I enjoy volunteering for the Arthritis Foundation together, touring Indiana wineries, and challenging ourselves in the kitchen to make healthy food and treats.

What will you be blogging about?  I will be blogging about living well with fibromyalgia and arthritis, including my experiences with research, tips on working with your medical and support team, exercise, and other helpful things I find along the way.  I’ll also focus on the Indianapolis Arthritis Walk and the exciting plans!

Kids (and Teens!) Get Arthritis Too Family Day

Hello, all! This is the first blog I've ever been a part of, but I'm excited to be teaming with the Arthritis Foundation to let you know about area events. As someone who has lived with Systemic Juvenile Rheumatoid Arthritis for almost 11 years, I understand the frustration and pains of being a young adult with RA. The Arthritis Foundation offers support to sufferers of all ages, and, our first event this year in South Bend is just around the corner, the Kids (and Teens!) Get Arthritis Too Family Day on March 26th. This free event is for children, teens, young adults and family members of those with arthritis. 

Here are the details:

Kids (and Teens!) Get Arthritis Too Family Day
Saturday, March 26, 2011
9 a.m. – 1 p.m.
Marriot – Downtown South Bend 
http://AFKidsGetArthritisSB.kintera.org/

Sessions are prepared for children and young adults ages 3 to 21, and their parents and siblings. The adults will focus on networking, nutrition, coping strategies for children, and navigating the education system with arthritis. Kids and young adults will be entertained with arts and crafts, exercise and meeting others who relate to them. Lunch will be provided and there will also be information available for the South Bend Arthritis Walk, taking place May 1. Families can RSVP online or by calling 574.251.1424. 

- Angela
 Read Angela's Bio 

Meet Angela Saoud Our Northern Indiana Blogger

Angela and her mother Mary Ann

Name: Angela Saoud

Hometown: South Bend

Arthritis Condition: Systemic Juvenile Rheumatoid Arthritis

Diagnosed in: 2000

How has arthritis affected your life: Arthritis has made me really focus on my health and learn not to take the good days for granted. 

How long and in what capacity have you been connected to the Arthritis Foundation: I started working with the AF in 2004ish -- I work on various committees and try to spread the word to the community that we're here to support and help. 

Why do you volunteer for the Arthritis Foundation: The AF is a great organization that really serves to help the sufferers of arthritis and their family members. That support is crucial. 

Advice do you have for others: Take nothing for granted. Get educated about your condition and do everything you can to make the most of your situation. Stay active. And smile, a LOT! 

A little about you: I am a 27-year-old high school English/Journalism teacher in LaPorte, Ind. I also teach aerobics classes three days a week and try to stay as active as possible. 

What you will be blogging about: Personal experiences with arthritis and upcoming events from the Arthritis Foundation, Northern Indiana Branch

Welcome to the AFIndiana Blog!

Welcome to the new Arthritis Foundation, Indiana blog! We’re excited to launch a new way to communicate with our supporters and friends news, events, advice and information about our chapter and arthritis-related diseases. From the behind-the-scenes peaks of our events, including Arthritis Walk®, Bone Bash and Jingle Bell Run, to the amazing courage of survivors, this is the place to check out what’s happening.

Katy Brown

Most importantly, this blog represents the community of our Arthritis Foundation in Indiana. Those with arthritis and related diseases, volunteers, medical professionals, financial supporters and staff will be contributing. It is our story of the connection we each have to arthritis and related conditions that brings us together to provide a better life for those living with these conditions, and eventually, a cure.

Katy Brown is an example of who’s a part of our community. Katy is this year’s Indianapolis Arthritis Walk® Honoree. When you think of Katy, you think of an elegant flower: beautiful, captivating, tender and full of joy and sunshine. These are natural qualities Katy possesses. But Katy also shares another quality with an alluring flower. She is delicate in her structures. Katy has had juvenile idiopathic arthritis since she was two.

Dr. Richard Bell

Dr. Richard Bell is another member of our community and this year’s Evansville Arthritis Walk® Medical Honoree. Dr. Bell is a member of the American College of Physicians and a fellow member of the American College of Rheumatology. With both practical and research experience, Dr. Bell has been helping people with arthritis for over 30 years.

We have a big job ahead of us. With 1.4 million people in Indiana living with arthritis, 6,400 are children; there are many more people to reach. That equates to one in every five Hoosiers. We challenge each reader to not only get involved themselves, but also reach out to one more. Keep up on our website, join us on Facebook, follow us on Twitter, or call our office 1.800.783.2342. Consider taking a next step by participating in one of our events, volunteering, donating or joining one of our exercise programs.

It will take our entire community to fulfill our mission. We hope you’ll consider being a part of it.

Resources:

http://www.cdc.gov/arthritis/data_statistics.htm

http://quickfacts.census.gov/qfd/states/18000.html