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

April Is Spondylitis Awareness Month!!

I realized that we're half way through April and I haven't officially celebrated "Spondylitis Awareness Month!" That's right, there's a whole month devoted to spreading awareness about this disease that affects more than 2.4 million people in the United States; a figure that more than the populations of San Francisco, Detroit, and Boston combined! It's also important to note that May 7, 2011 is World AS Day! Click here to see the Spondylitis Association of America's (SAA) press release about these initiatives, including some awesome videos and a unique way to get involved.

Although this is a special month for the Spondylitis community, I try to use Loving With Chronic Illness to spread awareness, offer information to arthritis patients and their loved ones, and celebrate people living with chronic illness. If there is something more that I could be doing or something you'd like to see here, please feel free to offer your input! Help me make this blog stronger!

 

To kick things off, I'd like to share an amazing new website designed specifically for kids with Juvenile Arthritis...

This website is called Kids Get Arthritis Too. When I was diagnosed at age 15, the news was not only upsetting and confusing, but I felt like the odd man out. This site aims to connect young people going through similar experiences and highlight inspiring stories. To top it off, the site is divided into 3 categories: Kids (ages 6-9), Tweens (ages 10-13), and Teens (ages 14-18).
 












 
I'd also like to point you back to some previous posts relating to Spondylitis (my personal story, volunteer opportunities, fundraising initiatives, etc)...

"The Beginning" (March 15, 2010)

This was my very first blog post where I introduced my story and the events leading up to my diagnosis (which took nearly 10 years to receive).

Spondylitis Awareness & How To Help (May 7, 2010)

I wrote this post right around this time last year. It includes some great videos created by Spondylitis patients a list of ways to help raise awareness and/or money for  the Spondylitis Association of America. Please look it over and consider contributing in your own way - no amount is too small!

Crucial Spondylitis Awareness Campaign Recently Launched! (July 28, 2010)

Read about SAA's campaign aimed at spreading awareness and reaching thousands of undiagnosed sufferers (on 400+ Television stations and even here in the middle of Times Square!). A central element of this campaign is this comprehensive and free questionnaire developed by physicians to help uncover undiagnosed cases of Spondylitis. It's quick, simple and requires no personal information.

The next two posts are about two amazing women in my life who are living with Spondylitis...

Spotlight On The Amazing Kate Brabon! (September 8, 2010)

Meet The Lovely Betsy Kratoska Baker! (October 10, 2010)

Quick & Important Survey For Spondylitis Patients  

(January 15, 2011)

This post talked about an important survey created by SAA. The information collected will be used by medical professionals as they work toward understanding this complex disease and developing a cure. It takes 10 minutes tops to fill out. 

Walking For Arthritis & For Myself (January 27, 2011)
In this post I announced that on May 15, 2011 I'd be participating in a 5K Arthritis Walk to raise money for the Arthritis Foundation. This day is fast approaching, so any donation at all goes a long way in showing your support for me and my awesome team ("The NYC Sick Chick Club"). I want to thank everyone who has already donated to my personal page! I'll be walking with you all in mind. 

Henri & The Bee: A Children's Book Supports Spondylitis (February 1, 2011)

Read about a children's book created by a phenomenal father-daughter team! They are donating the proceeds to these various non-profit organizations - the Spondylitis Association of America being one of them! Click HERE to visit the Henri & the Bee's official website.

 I'll end today's post with 101 Interesting Facts About Arthritis, including:

* 1 in 5 adults living in the United States reports having doctor-diagnosed arthritis

* There are over 100 different types of arthritis, each differing widely in progression, cause, symptoms and method of treatment.  The most common type of arthritis is osteoarthritis, affecting an estimated 21 million people.

*Arthritis is the leading cause of disability among Americans over age 15.

* More than half of those affected with arthritis are under the age of 65.

* Arthritis affects animals, too.  One in every five adult dogs in the United States has arthritis.

Thanks for reading!

Love,

Maya

My Brother's Tattoo In Honor Of Spondylitis

March 10th, 2011 started out terribly, but ended on the best note.

In the morning I went to the hospital for my most recently monthly Orencia infusion.  I'm usually there for about 3 hours: 45 minutes to get the IV set up, 45 minutes to get an IV dose of Benadryl (a precautionary measure because of my reaction to Remicade last year), 40 minutes of Orencia, and 30 minutes of Saline at the end. However, on this day it took over an hour and a half to get the IV in. Apparently I have the world's worst veins; I swear I can actually see the nurses scatter when I sit down for my treatment. Let me tell ya, it really makes a girl feel confident ;)

Although the infusion itself was pretty comfortable, I began having a coughing fit, chest pain, and suddenly felt like I had the flu as soon as it was over. While on an immunosuppresant drug like Orencia, anything in the chest can be dangerous, so I got an EKG to rule out all the scariest reasons for chest pain. As soon as I got the "OK" from my doctor, I was good to go. The ordeal took nearly 6 hours, but I was glad to have another dose in my system.

I'm not typically up for much more than a long nap after "infusion day", but I had some amazing plans that night! I headed to Brooklyn to meet my big brother Josh. I wrote last month about my brother's amazing gesture - deciding to tattoo the words "Stand Tall" (the slogan for the Spondylitis Association of America) on his arm to show his constant support of my health.  It blew me away and I assured him that, even if he changed his mind, the idea alone already meant the world to me. That night we ventured to Brooklyn Tattoo together (a place that had gotten rave revues). We were kind of like ducks out of water and it took a while to figure out the placement of the words.  Eventually it came down to a literal coin flip and we decided it looked best diagonally on his forearm. I could tell he was nervous and that the process was painful, but also just how sure he was of his decision. I told him how brave he was being to which he replied, "This coming from the girl who spent her day in the hospital? I'm just really glad I can do this for you." 

Doesn't it look amazing?

I don't know if Josh realizes yet just how deeply this impacted me. I will always be able to look to those words as tangible gesture of his friendship, empathy, love, and undying support. It means the world to me and so does he. I'm pretty sure I have the best big brother out there...don't you think?

Love,

Maya

The Evolution Of Optimism & Unconditional Love

April showers bring May flowers, but for someone living with arthritis, they can also bring pain. Today I'm really hurting and, truthfully, I'm just sick and tired of feeling sick and tired.

...There! I said it.

I can't help but let the word "unfair" creep into my mind every so often because really, it isn't fair. It isn't fair that lately I'm fatigued every moment of every day or that I live with constant pain (yes it's much better than last year, but it's still always there). It isn't fair that I can't do everything my friends can do - attend every party, make weekend trips to see one another, or even set plans for tomorrow. Fairness has no place in chronic illness.

A few years ago, I could never have said those words out loud. While I'm a positive person at heart, I embraced optimism as a way of life since my diagnosis at age 15. Initially, though, it was for the wrong reasons and this optimism was a product of fear. If I didn't keep an upbeat attitude about this disease, who on earth would want to be around me? Sadly, I believed that having Spondylitis was somehow an automatic "strike against me." For years - and really up until I graduated from Colby - I maintained this forced optimism and it became both exhausting and detrimental.

During my sophomore and junior year of college, I had been dating a guy for two years. I still remember a conversation I once overheard between him and his mother while they thought I was still sleeping. Even though I was in the midst of a flare-up, I had driven up to Connecticut to visit him. After several hours in the car, I was less than enthusiastic about going to a party the night I arrived (something that had been suggested in front of the whole family). The following morning, my boyfriend's mother cornered him in the kitchen and whispered, "After last night, I'm just worried that Maya is going to hold you back. Do you really want to be with someone who is sick?" He apparently agreed and I was dumped just weeks before our senior year of college. When I  couldn't be that same optimistic version of myself, I was clearly seen as "damaged goods." Understandably, this fed into that same insecurity I had carried around since my diagnosis. At that point, I genuinely felt there was nobody who would stick it out when things got hard.

My senior year was also filled with many friends who didn't understand. I lived with five girls that year, but only one seemed to truly care about what I was dealing with. She has always wanted health and my happiness and I'm very grateful she is still in my life. However, there were also roommates who genuinely didn't believe that my disease was real. They openly stated that my pain was an "exaggeration." As someone who spent years in "hiding", it took a great deal of courage to be open about my health and, while I didn't need validation to know that Spondylitis was very real, having "friends" deny my suffering was devastating. My college was 8 hours from my family and I felt more alone than ever.

Vicki and Palmer are two of the girls that "took me in" that year when I couldn't live in my own apartment. They wouldn't let me do any dishes because they knew it hurt me to lean over a sink.  If standing around at a party was too much for me, they were more than happy to skip it and watch movies on the couch. What really mattered to them was being together. Instead of having to cautiously bring up my health status like I had with so many past relationships, they asked how I was feeling. Even now, when we're states apart, they don't let a week go by without checking in. Occasionally I'll withhold medical details to save them from worry, but if they find out, I'm jokingly scolded and promptly reminded that "we're in this together." No matter how bad it's gotten, they've stuck by me and I will forever treasure their place in my life; their unconditional love.

Although my friendships were squared away, I still believed there was no romantic match for me out there. But then came John.  I always knew that he was special (even at age 16), but when I immediately felt comfortable enough to discuss my health with him,  I realized just how unique he was. He was deeply empathetic and his only negative feelings were ones of regret for not being there during previous flare ups. After one 6 hour conversation in which I had never felt so understood by another person, I remember falling to my knees and just crying from sheer joy and disbelief. Over the past 3 years, I've experienced an entirely different level of comfort, friendship, and love, knowing I could always be myself around John. We've been through the best of times and the worst of times, but so far we've only emerged stronger for it. 

Having found the friends and the boyfriend who mean the world to me, you'd think I could just sit back and enjoy the ride. While I believed in my heart that they were different, it took many hours in therapy to work through my anxieties and fear of losing them. What I came to understand was that I am not my disease; I am so much more than that. I'm someone with many strengths who has much more to offer the people in my life than my stamina. With this in mind, my optimism was no longer a necessity or a defense mechanism; instead I reclaimed it as a tool to benefit  myself and those I love.

Love,

Maya

cha-cha." -Robert Brault

Dating, Love, And Chronic Illness: An Interview With Dr. Saltz (Famous Psychiatrist & Relationship Expert)

Recently I had the pleasure of interviewing Dr. Gail Saltz, M.D. about a very important issue that affects more than 100 million individuals in the United States suffering from various chronic illnesses: dating and maintaining satisfying intimate relationships while living with illness.

Dr. Saltz is a renowned psychoanalyst, columnist, bestselling author, and television commentator who Tom Brokaw has regarded as "a voice of wisdom and insight in a world of confusion and contradictions." You might recognize Dr. Saltz from any of her repeated appearances on The Oprah Winfrey Show, ABC’s The View, Dateline, ABC’s 20/20 and Primetime, Fox New's Bill O’Reilly and Glen Beck, CNN’s Larry King Live and Anderson Cooper 360, HLN’s Jane Velez-Mitchell and Joy Behar, among others. She has also been featured or quoted in the Associated Press, Newsweek, O Magazine, Parade, Redbook, Woman’s World, Town & Country, New York Magazine, The New York Times, The New York Daily News, The New York Post, The Los Angeles Times, and WebMD. 

Dr. Saltz also hosts a series entitled "Strength of Mind" at the famed 92nd Street Y where she interviews celebrities and extraordinary individuals about psychologically interesting issues. To date, she has spoken with such luminaries as Woody Allen, Tom Brokaw, Katie Couric, Jane Pauley, Howie Mandell and Rosie O'Donnell, among others. She is an Associate Professor of Psychiatry at The New York Presbyterian Hospital Weill-Cornell School of Medicine, a psychoanalyst with The New York Psychoanalytic Institute and manages a private practice on the Upper East Side of Manhattan. I mentioned before that Dr. Saltz is a best-selling author, so be sure to check out all of her fascinating books and articles on a wide variety of issues (including a weekly column on MSNBC.com addressing questions about all kinds of relationships).

As Dr. Saltz worked toward her degree in Psychiatry, she did her residency in Internal Medicine and Psychiatry at Cornell-Weill School of Medicine and The New York Presbyterian Hospital. She explained, "I became particularly interested in the impact that illness had on the mind" and went on to do a fellowship in treating sexual dysfunction - a topic that she says was rather taboo at the time. Since illness has such a broad impact on an individual's life, medical and mental health professionals tend to just focus on the disease itself rather than the impact it could have on a person's sexuality and intimate relationships. Dr. Saltz explained, "The topic always ends up at the bottom of the priority list. How illness impacts sex was very important to me and I began doing a lot of couples work as well as individual work...there are many people who don't currently have a partner who still need to feel good about themselves as a sexual being."

Between keeping appointments with doctors, filling prescriptions, sticking to a medical regimen, and getting enough rest, coping with illness can feel like a full-time career. Add in work, school, volunteering, or maintaining relationships with family and friends, and it's hard to see an open space for dating. And then once you're on the date, a plethora of new concerns arise: When and how is the right time to bring up my illness? How can I make the other person feel comfortable? In the midst of falling for someone, how can I still do what's right for my body (i.e. ending the night earlier)? Dr. Saltz said, "In the dating world, it's really about when you choose to discuss the topic of illness. It's important to be thoughtful about when might be the best time; not disclosing this part of yourself too early or waiting too long." She also emphasized the importance of communication, even in these early stages. Since it's easy for people to take things personally (especially in the beginning), we shouldn't be insecure about explaining the real reason we may need to call it an early night. After all, if that person doesn't care to listen, then you've dodged a bullet anyway.

Just as with any stressor, Dr. Saltz says that the key to a functioning, long-term relationship in the face of chronic illness is good communication. She explained, "If a couple is able to communicate about and cope with illness, it's really a testament to the overall skills of that couple." We also discussed the anxiety surrounding chronic illness. Dr. Saltz explained, "Often when you're anxious about your illness, you tend to project that on to your partner...since you have the experience of being uncomfortable, you believe your partner will be uncomfortable too. Of course, you haven't asked them. The only way to know is to ask. It is equally important that both partners are able to be open about his/her feelings and concerns, so Dr. Saltz suggests a way that the sick partner may choose to invite honesty from their significant other. One might simply ask: "I'm thinking I'd like to talk to you more about something, but how do YOU feel?" She went on to say, "For the caretaker, it's often very difficult to say anything about their needs...they can feel so overwhelmingly guilty, not entitled, and concerned about keeping the focus on the patient. However, both partners need to give and receive; getting to stand in both shoes is important."

Of course, chronic illness can strike both males and females, and each gender must cope with certain insecurities about their health. Dr. Saltz reminds us, "people tend to underestimate how insecure men can feel. They can be just as insecure about how their bodies look and perform as women can be. Physically speaking, men have added pressure. If they're anxious about the sex act it will effect their erection and then they may start to avoid intimacy altogether." There is also the added factor of societal pressures. Dr. Saltz continues, "Admitting when there is pain can be very difficult and is seen as a factor of masculinity. Today's 30 something’s might have an easier time being open than today's 60 something’s because our society is becoming more open, but still there is the very real concept that real men don't complain and can tolerate pain. Men often don't want to go to the doctor and this can also be a real struggle for a couple."

As our conversation continued, Dr. Saltz added, "if you look at the 'happiness data', giving back is a big piece of satisfaction and both partners need to experience this. If one has the feeling that they're constantly on the receiving end it can make them feel useless. When people feel let in and listened to, they feel trusted and more trusting - those things lead to intimacy and don't require joint movement; they're really about communicating." I asked her about some typical romance issues experienced by couples coping with chronic illness to which she responded, "the nuts and bolts of having a sex life while living with chronic pain should be discussed. These changes can be scary, but again, it's about communication. What is okay for each partner to ask? What changes would embarrass me? Am I going to be less desirable or attractive to my partner now?" She continued, "Without talking about it, things tend to go poorly." She maintains that "each partner must be flexible about the definition of sex and open to different forms of stimulation and other sexual acts that don't necessarily involve intercourse. They may need to change the time of day and accept being less spontaneous. Maybe they could plan a candlelight breakfast if the mornings are better. It's all about remaining open to the possibilities. If you want to be successful as a couple don't just give up or let the issue go. It's important not to let [chronic illness] end your sex life because then you may lose the relationship." She added, "illness or not, when it comes to long-term relationships, change really is your friend."

We also discussed Dr. Saltz's involvement in New Way RA® (www.newwayra.com), a fantastic, one-of-a kind online talk show hosted by Deborah Norville and intended for people living with Rheumatoid Arthritis. It provides support and information for patients in a new and exciting way, and seeks to help people live well despite the challenges posed by their disease. The show enables viewers to "learn how to best manage their RA with advice from a leading rheumatologist, watch RA videos featuring people living with RA who share their experiences and inspiring stories, and understand the importance of feeling your best, both physically and emotionally." They've rounded up a series of well-known experts in their respective fields to ensure that the highest quality information is being delivered.  From relationship advice to valuable nutritional information to arthritis-friendly fashion, New Way RA® truly deals with the patient as a whole. In my opinion, the beauty of this program is that it provides convenient, useful, and free information that is pertinent for anyone living with chronic illness (and not just RA). Dr. Saltz is excited about participating in this initiative and said, "as much as I love the one-on-one work that I do in my office, I also love public education. It's great to be able to reach all kinds of people."

I want to thank Dr. Saltz for taking the time out of her busy schedule to speak with me. More importantly, thank you for all the important work you're doing to better the lives of people who are living with chronic illness and for all of those who love them.

Here are some websites associated with Dr. Saltz that may be of further interest: 

The Official Website of Dr. Gail Saltz

Dr. Saltz on Facebook

New Way RA® Online Talk Show