Kristi Hopkins NF author blogs for us!!

Reason I wrote the book.


For years I lived my life hiding and denying the symptoms of Neurofibromatosis. When a doctor finally "officially" diagnosed me, in 2007, hiding was no longer an option.


It was time to face NF head on! At first facing NF was met with anger and frustration and I was becoming just like my mother.


One day, after a particularly negative blog post, my husband asked me a question, that changed my perspective forever. "Kris, I love you, and that's a great blog post....But, what if you change the way you look at NF....Why not start inspiring people to do more than just survive NF?"


That day, 'Thriving with NF' was born, and became the start of a life-long process, that I try to live up to every single day.


After a year of sharing my stories on my blog, my husband and I talked about how neat it would be, if we turned all those stories, into a book.


We worked for a year. It wasn't easy to understand that people would really want to read about my life. I kept fighting my husband and he fought back...


I never realized how many stories I had. I never realized that my attitude switch would go on to touch so many people.


Now "Thriving with NF" has become a way of life. A bar that is set, that I try to reach every single day. Some days I do better than others, but the important thing is, is that I try!

Bailey NF young teen blogs for us!!!

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  When I found out that I had a tumor that needed chemotherapy, I felt like I was in a dream. "This isn't happening to me", I thought.
  
  I saw the shock in my mother's eyes, then I realized how serious it was.
  
  This wasn't just a simple NF tumor. This wasn't something to just watch. This was something that needed treatment, FAST!
  
  I honestly felt like they were talking about some other kid. I mean, I didn't have any symptoms. I didn't "feel" like I had a tumor in my head.
  
  Ever since my mom was diagnosed with NF, I have watched her attitude and how she deals with all this stuff. I made up my mind that I wanted to be exactly like her.
  
  Sure, I am scared...But I have decided to live my life the best I can. And to make all my decisions be ones that show someone who is looking at the bright side of things.
  
  Chemo isn't easy, Life isn't easy, but a better attitude makes it much MUCH better.
  
  I am glad to be like my mom. She helps so many people realize that living with NF doesn't have to be so horrible. I hope that I can do that for people too.
  
  Bailey Archer

Oh Veggies!!

Oh veggies!

Today marks the end of the 7-Day Vegetarian Challenge. At first I was unsure if I’d be able to pull through but I did it. I never realized how often I ate meat with my meals. I am generally not a big red meat eater, but chicken is one of my staple foods. This week, my staple became trail mix, not a bad substitute but definitely not chicken.

So how did I do it? The internet (and the support of my roommate)! In my search for delicious and nutritious foods, I visited a ton of websites, including: FoodNetwork.com, food.com, recipes.com, etc. Needless to say, the internet was ultimately my savior. Throughout the week, I called myself an ovo-lacto vegetarian, meaning I did not cut out eggs or milk. I think that would have been too much of shock to my system because, believe me, I felt different. I’ll list some of my symptoms I experience below.

Symptoms of vegetarianism:

No energy: I had heard that this was possible and it is completely true. Your body will initially have a rough time adjusting and you may feel fatigued, but it’s supposed to get better after a week or two. For this reason, I chose trail mix to munch on. In order to get through this slump, you have to find something to substitute for the lack of protein and iron that you’d normally get with meat.

Stress: What do I make? If I make this or that am I still following the rules? These were questions I was bombarded with daily, but was able to overcome. Again, it was the internet that saved me, and the help of a vegetarian friend that has to work around a meat-eating spouse. I learned to really use my resources to lessen the stress of going vegetarian.

No time: The time issue was something I had to combat every day. I’m on the go every second of the day and found that I really had to think about what I was going to eat before I headed out in the morning. Being vegetarian takes a little extra time management in the beginning, but its doable.

Crankiness: I was totally cranky this week. I had the urge to just go pick something up at the end of a long day of work and found that I couldn’t, or if I did I had to be very selective and conscious about what I was choosing. The crankiness was of course accompanied by the lack of energy and stress but was something that can also managed with the proper planning.

Overall, the week was difficult and at this point, I have realized I am in no way ready to be a full-fledged vegetarian. Despite the difficulties of the week, it helped me to realize what I do put into my body and the ability to take steps toward a healthier me. What I do know, is that I will attempt to eat less meat in the future. I’m thinking I’m going to go towards the poultry route. I’ve learned a lot from this experience and although I cannot manage a strictly vegetarian diet at this point, I vow to make steps to lessen my meat and processed food intake.

Yours truly, Bailey

Meditation Mindfulness and Diagnosis

Meditation methods have existed within every faith tradition and outside of faith traditions as a practical means to connect to inner strengths and to a bigger picture of life. As the people at the Littlest Tumor Foundation know very well through their impressive work, going through a loved one’s diagnosis, treatment, the family’s feelings of isolation and uncertainty and all manner of challenges, is a time when connection to resiliency, inner resourcefulness, and to one another is of vital importance.

I started practicing meditation in 1971 to try to enhance just those connections. The practices I learned, and now teach around the world, are based on: deepening concentration, so we don’t feel so scattered and fragmented and can be more in the moment instead of in the past or in future projections; strengthening mindfulness, so we have greater awareness and clarity about our experience; and increasing compassion towards ourselves and others, so that we have a new way of viewing ourselves and one another.

Here’s a way to begin, if you are moved to try:

Basic beginning Meditation Instruction

1) Start with just fifteen or twenty minutes, once or twice a day. While a relatively quiet place is useful for settling our minds down, there is no way to completely control our environment. Try to reach agreement with your family members or others who may disturb you while meditating that this is your time and to please wait until you are done. However, interruptions will happen. Don't let them upset you or throw you off balance.

2) Meditation begins with the belief that each of us has the capacity to understand ourselves more fully, to care more deeply both for ourselves and for others. It works to free us of habitual reactions that cause us great unhappiness, such as harsh self-judgment, and to develop greater wisdom and compassion. Meditation gives anybody who pursues it an opportunity to look within for a sense of abundance, depth and connection to life.

2) Sit in any position that is comfortable to you, chairs are fine, just try to sit upright. Your arms can be anywhere that feel natural to you. You can sit with either your eyes open or closed…you can experiment with both. If your eyes are open, instead of looking around, find a spot in front of you and rest your gaze. If at any given time you can’t do sitting practice you can lie down, or do walking meditation. If you have a physical limitation and can’t walk, e.g. you are in a wheelchair, you can do wheeling meditation. There also is no need for special paraphernalia. Feel free to change position when you need to.

3) Start by just feeling your breath as it enters and leaves your nostrils. You don’t need to adjust the breath to make it deeper or finer: simply feel it as it is and as it changes. Rest your attention lightly on these sensations. If images or sounds or emotions or other sensations in the body arise, and you can still be aware of the breath, let these other experiences flow on by -- you don’t have to follow them, or fight them.

4) Sometimes these experiences are much stronger than our awareness of the breath, and we realize perhaps only after some time that we have been distracted. Know that your mind WILL wander, just notice where it went and then gently bring it back to the breath -- every time, over and over. You will think and feel many things, both emotionally and physically, while you meditate. It is all ok. Just quietly bring yourself back to the breath.

5). It is ok if you fall asleep at first. Make sure you get enough sleep at night if you can, and avoid meditating during your lowest-energy times of the day (right after meals, etc.). Eventually, the urge to sleep will pass.

6) If you don't feel at ease meditating alone, find a meditation group that you feel comfortable with. Friends and family members may want to practice with you, which can be very supportive if everyone has the same understanding about the time frame involved.

7) Above all, have patience with and compassion for yourself. Each of us faces our own challenges in meditation, but the rewards are well worth it if we are kind to ourselves and keep on going!

This Littles Light of Mine

This Little Light of Mine

Greetings, my name is Sue Ansari. I am a registered nurse, laughter yoga teacher, raw food chef, wellness coach, holistic health counselor and a cancer survivor. Yes, it is so important when dealing with this diagnosis to do and be all things healthy – stay away from all processed foods, heap on the organic fresh fruits and veggies, drink plenty of water, exercise, but how often has your doc given you a script for laughter?

Laughter effortlessly accomplishes deep breathing, increases endorphin production, decreases pain, decreases stress and simply makes the “medicine” of the day go down so much easier. You don’t need to laugh for a reason, just throw your head back and laugh for NO reason….the benefits will be the same and you will feel better, promise!

I appreciate the Littlest Tumor Foundation asking me to contribute to their wellness blog and offer my hope and support for the work they are doing. I would like to share with you something I wrote recently for another blog that will hopefully help you understand the healing power of laughter.

“A couple of days ago, I received an email from a self-help cancer site. It was well-written, well-intended, but it seemed to be missing something. The article was about restoring joy that often in a post-cancer state can be very challenging.

It suggested that one concentrate and focus on those many positive items we all have in our lives - home, family, friends, the beauty of Nature, music, etc. - and thus, be filled with feelings of joy. At least for me, the joy I feel thinking those thoughts doesn't stick with me for long.

Luckily, I have been bitten with an infectious Indian laughter bug known as the "HohoHaha Syndrome" which can literally move you from motion to emotion. What does this mean in less scientific terms? Hmmmmmm, let me see, how can I explain?

There are many beautiful candles in my home - not only are they fragrant, but several are also embedded with a variety of gorgeous flowers. I can look at them, appreciate them, but only when I light them, do I receive the FULL benefit of their candle beings.

All of my life, I have been surrounded not only with beauty, but also with wonderful friends and family who have added so much to my life; however, my "fire" needed to be lit before my true brilliance and joy could be realized. For me, being infected with the "laughter bug" accomplished that.

Laughter has forced me to tell my body to laugh (the motion) which eventually, over a protracted period of time, fired up my inner candle, thus releasing my joy (the emotion). The strange thing about this syndrome is that it infects in a powerful, insidious way. I must tell you, during the entire incubation period, my personal life was a huge mess - there was very little to laugh about, let alone feel happy about; however, as the “laughter bug" kept biting me, I laughed....and laughed....and laughed. The more I laughed, the better I felt and the better I felt, the more I laughed! What a fantastic, positive vicious cycle!

The syndrome often leaves me feeling light-hearted, as well as, occasionally, a bit light-headed. I sleep deeper, have a much more laid-back attitude about life in general, often have an inexplicable desire to laugh out loud for absolutely NO reason and often do so while driving. I feel upbeat most of the time and rarely succumb to severe bouts of depression as was the case prior to my “infection”.

Now that my inner candle is burning brightly, “this little light of mine” allows me to see vividly the beauty all around me and it lights my way, so that I can share that joy with others. Some days I feel I would like to wrap my arms around the entire world and give it a good squeeze! Amazing what an “infection” such as this can do to a mind and body. Simply tell your body what to do and your mind will have no problem following!

O what is laughter?

What is this precious love and laughter

Budding in our Hearts?

It is the glorious sound

Of a soul waking up!

- Hafiz...

Sue Ansari RN and Certified Laughter Yoga Teacher was among the very first certified Laughter Yoga teachers in the US, training in 2005 with Dr. Madan Kataria, the founder of Laughter Yoga, in Interlaken, Switzerland. He has twice recognized her as a “Laughter Ambassador” for her outstanding contribution to the Laughter Yoga movement. A cancer survivor herself, Sue is actively engaged locally and globally in presenting cancer/wellness retreats with Laughter Yoga at its heart. Presently, she is a part of the International Laughter Yoga team, assisting Dr. Kataria with his work and writing. Locally, she is on a mission to bring more laughter to the ailing city of Detroit, as well as to the medical community at large.

Laughter Yoga is a unique concept based on the principle of “acting happiness” – tell your body what to do and your mind will follow! Through a series of simple exercises and breathing techniques, Laughter Yoga will unlock the door of your heart and soul, thus releasing your Inner Joy, allowing you to re-acquaint yourself with the carefree, light-hearted child you once were.

HYPERLINK "http://www.laughteryoga-michigan.com" www.laughteryoga-michigan.com

Americorps goes Little

Hi there! My name is Bailey and I’m a recent college graduate. Upon my graduation, I set out on an adventure to find something new to fill the free time that was to come. Lucky for me, I found the Littlest Tumor Foundation. Before applying for my position through AmeriCorps, I had never heard of the organization before but was intrigued and continue to be everyday. Like my AmeriCorps and Littlest Tumor Foundation partner, Emily, I knew nothing about Neurofibromatosis (NF). According to the National Institute of Neurological Disorders and Stroke, “The Neurofibromatoses are genetic disorders that cause tumors to grow in the nervous system.” After learning about the diagnosis, I was dumbfounded that it was a new topic for me and for those around me. How could I not know about this?!? How do I learn more? And finally, what can I do?!? These questions seem simple enough to answer right? Well, I’ve been answering them, but its been a day to day to day process. There is always something to learn and people to educate, which is no small task but I’m willing to hit the ground running.

Littlest Tumor Foundation is a remarkable organization with a bright future. The foundational building blocks of the organization include: Awareness, Wellness and Volunteerism. Not only are these outstanding goals for a foundation, but for one’s personal life as well, especially the life of a recent college grad. I look forward to my work with the Littlest Tumor Foundation and helping the organization to accomplish these goals locally, nationally and internationally. I also hope to make my own changes and incorporate Awareness, Wellness and Volunteerism into my daily lifestyle and I hope others are willing to embark on a journey of self improvement that include these goals as well. My motto is, “Be the change you hope to see in the world.” Props to Ghandi for the brilliant quote. Join me and the Littlest Tumor Foundation to be that change and make a better world for children with tumors. Lets work together to cure NF!!

Engaging in a Cure!

Wednesday June 8, 2011

Wellness is a lifestyle that has the power to heal. As a new AmeriCorps member working with the Littlest Tumor Foundation, I believe this statement is absolutely true. Before I began working for this foundation, I knew very little about Neurofibromatosis, let alone had even heard of it. I decided to dive into researching the illness and learning all I could about individuals dealing with NF. Neurofibromatosis effects 1 out of 3,000 people, which is much more common than one would think. Even though I have only been working for the Littlest Tumor for a week, I am extremely excited to embark on an incredible journey in making NF preventable. As a recent 2011 graduate from UW-Stevens Point, I graduated with a double major in Interpersonal and Organizational Communication and International Studies. My career goals are centered on improving and inspiring lives by working at the root of an aggressively passionate non-profit organization. Through the foundation’s holistic approach and dedication, families and children are helped each and every day. The Littlest Tumor Foundation is the inspirational grassroots organization I was looking for and I am thrilled to be a part of the cure this summer.