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

Spotlight On The Beautiful & Vibrant Ali Yuhas!

As I was designing Ali's spotlight, my biggest struggle was finding page dividers that were bright enough. Quite simply, Ali is a ray of sunshine and, although we've only hung out a few times, her presence just makes me feel good. I've loved sharing stories with her and, better yet, laughing about the inherent absurdity of chronic illness. She's just one of those people I "click" with - something I predicted when I first saw Ali on Jodi McKee's portrait project.

Ali works at SeamlessWeb.com, a well-known food ordering web site. As she puts it, "I studied computer science/IT stuff in college and after getting a BS in Digital Media and doing lots of photography/studio art work, decided that I was going to pursue my MFA in Design at BU to explore the more artsy side of things - which everyone can see here: http://www.ahasdesign.com." Ali's attitude is something that I love being around and, even though she has endured so much, she maintains a positive attitude about it all. I've learned to laugh about my struggles with her; to focus less on what I can't do, and more on what I can. For instance, Ali takes gorgeous photographs and has even started something called her "365 Project" with the goal of snapping a photo a day for one whole year. Click here to see several other collections. She sees the world in a beautiful way and I can't help but think this is somewhat impacted by her illness. She's been forced to slow down since her diagnosis and, while that can be frustrating at times, I also think she also notices more of her surroundings that others may miss. So now, allow me to introduce Miss Ali...

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

I was officially diagnosed with Ankylosing Spondylitis in 2003. However, this stemmed from endless misdiagnoses that started after a gymnastics injury the summer between 7th and 8th grade in 1998, and turns out relates to issues that were present since birth. I was 13 in 1998, and was just about to be 19 and head to college when I was actually diagnosed.

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

Autoimmune things in general are so finicky to diagnose, and AS is no exception, but I would first tell them to be really happy that they're on the road to treatment. Getting a concrete diagnosis was half of my battle, and although I did have to take time to be 'okay' with the reality of what was going on, the prospect of an actual diagnosis, with actual medications that had the potential to work, was incredibly exciting. To this point, try not to get discouraged if it takes a while to find a medication (or doctor, even) that works. It took a couple of years, a really bad allergic reaction, some crazy doctors, and lots of frustration for me to find something that worked.

As far as chronic illnesses in general go, I'm still dealing with what mine has to throw at me, so the best advice I can give would be to take it one day at a time. Enjoy the little things, listen to your body, don't take anything for granted, and don't ever (ever) give up. Even though I was considerably young when everything first started, I look back now and realize that I actually did know what I was talking about and telling doctors. Chronic illnesses are tough enough to deal with, and if you can find the strength, please remember to just trust yourself - go with your gut.

Please explain a bit how your condition affects you.

Oh goodness, this is a tough one. I hate to say things like this, but as I'm getting older, I'm realizing that AS might effect me more than I'd like to admit. Symptoms range from fatigue, stiffness, and joint pain, to strange muscle spasms, weird digestive issues, and a newly diagnosed case of psoriasis. The hardest to cope with is probably the pain and fatigue, as it's so much more than "just being tired". I'm not one for taking a breather, and I still grapple with the fact that I need to slow down; this is also probably the most apparent element that has changed with time. Coming to terms with the fact that I don't have to (and probably shouldn't) constantly push myself and that it really is okay to ask for help has been, and I think will continue to be, something that I have to work on.

On an emotional level, dealing with AS has been one huge roller coaster. There are the good days when you marvel at feeling well and then there are those days when you want to sleep for hours after just sleeping through the night or walking to work. The latter gets frustrating, but helps you appreciate the former so, so much.

Where do you get your strength?

These just keep getting harder and harder! :] But ok. Honestly, this is a tough one because I really am not quite sure. When I was first diagnosed, my parents weren't very understanding of the "invisibility" of the pain that was going on, and even now, don't quite "get" things; they chalked it up to me being an angsty teenager looking for attention. It's hard dealing with that, and there's nothing easy about it, but I've always kept a journal and have always played the piano - two things have been incredibly therapeutic and helped me be 'okay' with everything.

I'm also one of those people that got ridiculously lucky with the friends in my life. They know that understanding completely is something they're not able to do, but admit this, which makes their current understanding that much more genuine. They let me rest, understand if I need to take a breather, offer me the couch instead of the floor if I'm spending the night, and don't discount my fatigue as 'laziness'. Over the years, friends going back all the way to elementary school are still in my life, and I couldn't be luckier; they help me remember that my condition doesn't define me, and that I get to define *it*.

In addition, I've come to realize that sharing my story is a great thing, and the people you meet in doing this are even better. There are people who understand, who can make you feel less 'alone', and who can relate. I do think Plato's quote "Be kind, for everyone's fighting a tough battle" encompasses things pretty well - there are others who are experiencing things we can't even begin to imagine and everything can always be worse.

What are you most proud of?

I think I'm the most proud of the fact that I haven't let AS get in my way. When I was a junior in college, I studied abroad in Italy. Despite the fact that I could only bring so much medication with me, had to venture from Italian hospital to Italian hospital to "prove" that I really needed my meds, and had to pay, in full, before getting reimbursed by my American health insurance, it was possible.

The summer after I did this, I drove cross country with Enbrel and a cooler of ice in tow. Two summers later, right after college graduation, I entered grad school. My AS was in a huge period of remission during this time, and I worked 4 jobs to support myself while writing my thesis; between years of grad school, I backpacked through Eastern Europe for 3 weeks.

There were definitely ups and downs, but I also learned a great deal about myself, how to cope with the craziness of AS, and how to be confident in dealing with everything. ...I'd sign up to do everything, the same, all over again.

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

Explain things to your patients, learn their names, listen to them, and work with their other relevant doctors. Understand that we're more than your 3:30pm, second-Tuesday-of-the-month, right-after-your-3pm appointment. I've had doctors tell me everything from the fact that I simply need to be out in the sun more, to the fact that I needed to be put on antidepressants. A team approach is so critical to treating anything chronic, and makes everyone's lives easier and less painful. In the end, the bottom line is that doctor's aren't the experts on your body, you are, and you need to stick up for that fact.

Thanks so much, you beauty!

Love,

Maya