It's May 7th! Happy World Spondylitis Day!!!!

Happy World Spondylitis Day!!!!

May 7th is a special day for the Spondylitis community and a big step toward greater worldwide recognition of a disease that affects more than 2.4 million people (that's more than the populations of San Francisco, Detroit, and Boston combined!). In case you missed it, please check out my April 14th post in honor of Spondylitis Awareness Month. It's filled with lots of great resources and arthritis-related websites. 

The Spondylitis Association of America is hosting its 2nd annual video awareness contest, an initiative aimed at spreading information about Spondylitis. Each entry should be up to three minutes in length, answering the question "What should people know about Spondylitis?" Entries must have Spondylitis as their focus and an educational value for the general public. The contest ends on May 30, 2011 and the winner will receive $1,000! The next four winners will receive amounts ranging from $50 to $300. The top 10 entries will qualify for a free one-year SAA membership and SAA promotional items. Here is the short video that won first place last year...

Appropriately, the next topic for Chronicbabe.com's bi-monthly blog carnival is "AWARENESS" which asks people to write an "awareness statement" about their specific disease. So here goes...

It's been a long road, but I've come to see Spondylitis as a vital part of the person I'm proud to be. This disease has been my greatest challenge and, at the same time, my greatest blessing. Therefore, it means the world when you truly care to learn about it. Please ask questions; learning helps to bridge the gap between the "healthy" and the "sick" and make me feel less alone. Often, a simple and sincere "How are you feeling today?" goes a very  long way. It's also crucial to understand the unpredictability that comes with an autoimmune disease like  Spondylitis. My symptoms (pain, stiffness, fatigue, etc.) can change from hour to hour and thus it can be nearly impossible to make definite plans. Please don't dwell on my limitations. Instead, look at the things I can still accomplish and the courage it takes to get through each day. More than anything, please know that it's the littlest "every day" things that can mean the most to someone living with pain...offering to carry a heavy bag, walking slower than normal...this subtle understanding means the world.

Love,

Maya

Giveaway Winner & Thoughts About My Walk!

The latest giveaway was particularly exciting for me not only because it prompted the most entries yet, but because the prize was a photograph from a talented artist and personal friend. It was also very interesting to see what photo people selected and why. The winner of the Jodi McKee Giveaway is...

Lynn!

Lynn chose the photograph pictured below. Coincidentally, she had one of the most beautiful responses:

"I would choose the fourth picture. It reminds me of my 13-year-old daughter who suffers from spondylitis. Her life is one beautiful and fragile day built up on another. She handles her arthritis with strength and grace and the stem in that picture makes me think of her---it looks so fragile yet it stands tall while carrying its burden. The background of hard, dark, buildings makes me realize the hardness of the life that surrounds her. Yet she seeks out the light and she shines!

My daughter's name is Grace and it couldn't be a better name for such a beautiful girl who is filled with grace both inside and out."

This giveaway reminded me about the power of art. Depending on the onlooker, one image can mean many different things. I love what you saw in this photo, Lynn. I hope you'll hang it as a reminder of your amazing daughter. She is so lucky to have you as her mother and as her supporter. Please e-mail me at mklaub@gmail.com with your mailing address and we'll get it over to you ASAP!

Secondly, I wanted to take a minute and write about my upcoming Arthritis Walk in New York City! In 12 days (on May 15th) I will be setting out on a 5K Walk with friends, family, and my awesome teammates by my side. While I'm very excited about that day, I'm also a bit anxious. 3.1 miles might seem like a breeze to some, but I haven't walked that much in well over a year. I'm thinking I may take a lightweight wheelchair along with me because, when my hips say "stop", there's no fighting that. This way, even if I can't keep walking, I can still cross the finish line. Plus, my wonderful boyfriend offered to push me the whole way if need be. My pain level has been very low lately (Thank God), so I'm just hoping it stays this way and I can reach this goal that I've had for so long.

I've been extremely moved by the outpouring of support from friends, family, classmates, and my amazing readers. It has honestly meant the world to me and I will be walking with all of you in mind. If anyone still wants to make a donation, my fundraising page will be open for a few more weeks. Please remember that even a dollar goes a long way in showing your support. and - donation or not - "good luck" messages are ALWAYS appreciated and deeply felt.

Love,

Maya

Spotlight On The Inspirational Megan Smith!

I'm excited to present the latest participant of my Spotlight Series and officially expand the scope of this project past physical illnesses and/or disabilities. Meet the incredible Megan Smith! Megan and I met at Colby College where we had many common friends. Although we never spent much time one on one, I always enjoyed her presence and never heard anything but awesome things about her. 

Megan lives with Tourette's Syndrome (TS), a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years. Tourette's syndrome is defined by multiple motor tics (kicking, stamping, jumping, touching, etc.) and/or vocal tics (grunting, throat clearing, shouting, etc.) lasting for more than one year. According to the Tourette Syndrome Association (TSA), "symptoms of TS vary from person to person and range from very mild to severe, but the majority of cases fall into the mild category. Associated conditions can include attentional problems (ADHD/ADD, impulsiveness (and oppositional defiant disorder), obsessional compulsive behavior, and learning disabilities...most people with TS and other tic disorders will lead productive lives...there are no barriers to achievement in their personal and professional lives."

Megan is a prime example of how those living with this syndrome can excel in their lives and achieve anything they want. I know her story will inspire you.

What is the year you were first diagnosed? How old were you ? 

I was first diagnosed in 2003 when I was 17, although I've had noticeable symptoms since I was 4.  

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

Tourette syndrome is not a death sentence.  Yes, it is most likely a chronic condition that you will deal with for the rest of your life in some capacity (although your symptoms may decrease or abate in early adulthood), but you can get through it.  Learning to cope with the tics, as opposed to fighting them, is often a much easier way to deal with the symptoms.  Be creative - get regular massages to soothe the physical pain from the tics, avoid loud, crowded spaces when you are tired if you know that it will exacerbate your tics, etc.  Self-consciousness is one of the hardest things to cope with - practice explaining to people about your tics - it will boost your confidence and help get rid of that "elephant in the room" feeling.  Also, don't lower your standards just because you have Tourette's - you are just as mentally and intellectually  capable as anyone!

Please explain how your condition affects you. 

The main symptoms of Tourette syndrome are motor and vocal tics.  Motor tics are movements and can range from simple eye blinking to more complex patterns of movement (e.g. jerk head, throw arm out to side, and then snap fingers).  Vocal tics are sounds and they can range from simple throat clearing and coughing to repeating words and phrases.  Coprolalia (rude or obscene words), the symptom that everyone associates with Tourette's, is only present in about 10% of the Tourette population. 

For me, the hardest thing to cope with besides the self-consciousness and occasional shame, is the pain and fatigue associated with my tics.  I tic almost every minute of every day.  Many times, I am good at camouflaging my tics.  For example, I cough when I have the urge to say a phrase or word.  When walking, if I feel the need to squat, I pretend I am tying my shoe.  Some tics are hard to hide, and those are usually the most painful.  Head jerking, loud grunting, and arm flinging are especially difficult.

Because of this almost constant movement, I fatigue much quicker than other people.  By five o'clock I am usually exhausted and need to lie down for an hour, so that I am able to get through dinner and whatever else I have planned for the evening.  It took me a while to realize that I couldn't keep going all day like a "normal" person, which was a hard pill to swallow at first, because everyone with Tourette's wants to feel as "normal" as possible.  College was hard at times, because when people were just gearing up for the weekend, I was looking forward to the weekend so that I could sleep and prepare for another week.  I was always physically exhausted by Friday!  In addition to the fatigue, there is pain associated with some of my more intense tics.  To compensate, I take pain medication and get regular massages.  I also take medication specifically for the tics when they are really bad (there is no actual medication for Tourette's - doctors have to experiment with medications for other neurological/pyschiatric disorders, including epilepsy, Parkinson's, and psychotic disorder (no-I'm not psychotic ;-)   Unfortunately, these medications make me tired and I hate taking them as they put me "out" for a day or two. 

The disease has changed with time.  When I was younger, the tics were mainly motor.  I had few vocalizations and more motor tics - head jerking, squatting, snapping, eye blinking.  As I have gotten older, my motor tics have become less apparent (abdominal tensing, neck stretching) and my vocal tics have increased.  I have learned to cope with it and have come to realize that I will always need to make special accommodations so that I can be the most successful person that I can be.  This fact, however, does not diminish my value as a person and I should not feel ashamed that I need to make such accommodations. 

What are 3 things you couldn't live without?

I could never live without my animals.  They are a calming influence and do not judge me based on my odd movements or behaviors.  Having dogs also forces me to get out and exercise, which is really important for people with tics.

I could never live without my parents in my life.  They are the reason that I have done so well.  I continue to live with them at home and they are a stabilizing force in my life.  Although I plan to move out in a year, I know that they will always be supportive.  I believe that because my parents, and mother in particular, never let me use my tics as an excuse, I have come so far.  They always focused on solving the immediate problem at hand and never allowed me to wallow in self-pity or ask "why me?"

I also couldn't live without the opportunity to travel.  It is a passion of mine and I savor being able to experience a different language and culture.

What are you most proud of?

I am most proud of the fact that I never let Tourette's stand in my way of accomplishing what I wanted to accomplish.  All too often I see people who cannot seem to get past the fact that they have this chronic, embarrassing, and at times, debilitating disorder.  Maintaining a positive attitude and refusing to let Tourette's be the reason for not pursing a passion is essential.  I am proud that I got through college and am now on track to attend medical school.

Where do you get your strength?

My family, friends, co-workers, and pets!

If you could send one message to medical professionals around the world, what would it be?

Think about your treatment plan for people with Tourette's - medication can make a difference, but don't just medicate because it is the easiest way to help tics.  Emphasize the importance of maintaining a normal life, pursing hobbies, meeting people, forming relationships, and having fun!

Megan, I want to thank you for opening your heart up to us! You've given an amazing voice to an often misunderstood condition and you are truly remarkable.

I want to end this post by telling you all about an incredible documentary I saw in class the other day: HBO's Have Tourette's, But Tourette's Doesn't Have Me. Below, you can see a preview and learn about these incredible kids. I really recommend renting and viewing the entire thing - it brought me to tears and gave me a much greater understanding of the condition.

Love,

Maya

Guest Post: My "Dream Catcher" Support System

My Dream Catcher Support System

By Betsy Kratoska Baker

The Lakota Tribe is just one group that incorporated into their heritage the Dream Catcher.  Their story is a little different on how the Dream Catcher came about.  Here is their version as written in the book American Indian Stories, Legends, and Other Writings (Penguin Classics) by Zitkala-Sa, Cathy N. Davidson, Ada Norris Published by: Penguin Books; (February 25, 2003).

Long ago when the world was young, an old Lakota spiritual leader was on a high mountain and had a vision.  In his vision, Iktomi, the great trickster and teacher of wisdom, appeared in the form of a spider.  Iktomi spoke to him in a sacred language that only the spiritual leaders of the Lakota could understand.

As he spoke Iktomi, the spider, took the elder's willow hoop which had feathers, horse hair, beads and offerings on it and began to spin a web.  He spoke to the elder about the cycles of life...and how we begin our lives as infants and we move on to childhood, and then to adulthood. Finally, we go to old age where we must be taken care of as infants, completing the cycle.

"But," Iktomi said as he continued to spin his web, "in each time of life there are many forces -- some good and some bad. If you listen to the good forces, they will steer you in the right direction. But if you listen to the bad forces, they will hurt you and steer you in the wrong direction."

He continued, "There are many forces and different directions that can help or interfere with the harmony of nature, and also with the Great Spirit and all of his wonderful teachings."

All the while the spider spoke, he continued to weave his web starting from the outside and working towards the center.

When Iktomi finished speaking, he gave the Lakota elder the web and said...."See, the web is a perfect circle but there is a hole in the center of the circle."

He said, "Use the web to help yourself and your people to reach your goals and make good use of your people's ideas, dreams and visions.  If you believe in the Great Spirit, the web will catch your good ideas -- and the bad ones will go through the hole."

The Lakota elder passed on his vision to his people and now the Sioux Indians use the dream catcher as the web of their life.

It is hung above their beds or in their home to sift their dreams and visions.

The good in their dreams are captured in the web of life and carried with them...but the evil in their dreams escapes through the hole in the center of the web and are no longer a part of them.

They believe that the dream catcher holds the destiny of their future.

Maya recently asked if I would ask someone in my life to participate in her new initiative, “Spotlights On Those Who Love Us.” After much thought, I realized that I have a unique support system. It consists mostly of my friends and sometimes my family when they are able to offer help.  My support system is like a safety net made up of so many loving and generous people.

It is quite different than Maya’s support system. I often find myself telling her how lucky she is to have the support she does. Her parents will come to her infusions. She describes John as the "best medicine out there" in her March post entitled "Love As A Painkiller." Her brother got a tattoo in support of her. Sometimes I long for that.

It is not my reality, but I have a different one and am learning that, mine too, is one to be proud of.  Last month, I had to have an emergency appendectomy and, while I did not have family with me as I was prepped for surgery, I had another gift. My friend’s gentle and sweet hubby came to be with me in the emergency room, reassuring me and said he would speak with his colleagues assigned to my case. When I was brought down to the operating room, there he was talking to the team, holding my hand and talking to me as I went to sleep. How beautiful! I have such a great friend that her husband came to be with me as I drifted away. Not many of us are that lucky to have an empathetic and caring doctor and friend with them as they go under, but I did. He brought me such comfort and I can't thank him enough.

This last month I realized that I do have a “village” of mothers that can and will jump in. I just need to learn to accept the help. This group is helping me achieve my dreams. Instead of thinking of my support as a safety net, I decided to view it as a dream catcher.  Instead of dwelling on specific relationships that may let me down, I have the beauty of having so many generous people woven together in my life. Not only do they catch me when I fall; they help my family achieve its dreams. Between my playgroup mommy friends, friends I've made through my children’s schools and neighbors, I've had so many offers of help. Meals were brought to my home, my children were driven to school and to their activities, and many play dates were offered. Even though their dad had to go to New York City two days after I was released from the hospital, I know my boys were cared for and loved by so many.

And yes, it hurts that I don’t receive the unconditional love and support I once expected from some people, but it hurts more to dwell on it. In this last month, I learned to be grateful for any help offered, instead of feeling let down by those I once hoped would help me unconditionally. I’m learning to accept that sometimes people can't handle your illness and can't support you. But that's okay because there are so many others woven into my support system that can. I've learned that love - not just biology - make a family. With this new outlook, I can now see the beauty in my created dream catcher family.

Although much time has past since our high school days, John Horton (who was spotlighted in this February post) has become an active part of my support system.  In this last month we have ended up having nightly Facebook chats. He reminds me that I am not alone; that we are united in our pain and understanding. John not only reminds me that I can carry on, but that giving up is not an option. He is another reed woven into my dream catcher; another silver lining. 

When I was newly diagnosed with Spondylitis, I joined the Spondylitis Association of America (SAA) and via their Facebook page, I was directed to Maya’s blog. I was instantly attracted to her writing because I felt as if I was reading my own thoughts. I was not alone and I found it so cathartic. Maya and I began a relationship outside of her blog. The common ties seemed endless—our desire to pursue masters in social work, our Jewish heritage, our travels to Ecuador, and our love of poetry and music. She has a heart and mind that I fell in love with. This past summer, I made a trip to New York City and met Maya for the first time. She is the first friend I have made exclusively online, so this was new, yet exciting territory. Upon our first real hug, I knew that our friendship was real. She is as beautiful inside and out as she came across in our communications. I think of her as one of my many silver linings to this disease.  Maya is a great friend and significant part of my support system. Spondylitis is what brought us together, but it is not what unites us; instead, it is our mutual empathy and kindness that will keep us strong. The entire A.S. online community, along with my dear Maya, complete my dream catcher.

Whether you're chronically ill or not, life rarely goes as planned. Accepting reality and making the most out of it, has led me to pursue a life of gratitude.

Thank you so much Betsy for not only opening up your heart to us, but for reminding us that there are many ways to love and to be loved. What you didn't mention is that you are an integral part of so many other dream catchers (including mine). As the Beatles once said, "and in the end the love you take is equal to the love you make..." 

Love,

Maya

Win A Gorgeous Print Of Your Choice By Photographer Jodi McKee!!

I've written before about my friend Jodi, so click here to read her spotlight and learn more about this awesome woman. We met last summer after I found her blog, the Autoimmune Portrait Project (which I wrote about in this July post). I was amazed by her vision and desire to help other through art. Her talents extend far beyond portraits, as she photographs anything from lovable pets to gorgeous cityscapes; her eye is truly amazing.


Jodi has an online store on one of my very favorite websites, Etsy.com - click here to view the awesome collection. I asked if she might be interested in doing a giveaway for my blog and I was thrilled when she said yes!  Not only that, but Jodi is offering four never-before-seen prints just for my readers! If you're the winner, you'll get to choose from one of these gorgeous prints (measuring 8 X 11 inches)...

You have a chance to submit three entries and increase your odds of owning a Jodi McKee original!

For Entry #1:
Please comment on this post, specifying which of these 4 photographs you'd choose if you were to win and why.


For Entry #2:
Head on over to Facebook.com and "like" Jodi Mckee Photography on Facebook.

For Entry #3:
Please tell me what other things you might like to see as future "giveaways"!


You may enter this giveaway until 11:59 pm EST on May 2nd. and a winner will be announced the following day. Don't forget to check back to see if you've won because winners have 2 weeks to claim their prize by contacting me via e-mail (mklaub@gmail.com). To keep things fair, another drawing will take place (from the original entries) if the prize isn't claimed by this time.


Another exciting tidbit! After the winner is chosen, Jodi has graciously offered to provide my readers with a special 15% off discount code that can be entered upon checkout in her Etsy store.


Stay tuned and good luck!

Love,
Maya