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

Spotlights On Those Who Love Us: Meredith Brabon!

I've written before about my "Australian soulmate", but in case you missed it, here is Kate's spotlight, While there are many similarities between us (including Spondylitis), a central one is our endless love for family. Kate is in the middle of her two sisters, Emily and Meredith. I've joked that I'd love to be the fourth sister and somehow they've made me feel like I am.

Recently Kate suggested expanding my "Spotlight Series" to include not only people living with chronic illness, but to their loved ones as well. I thought her idea was fantastic, especially since a central element of my blog has been discussing the relationships that have sustained me. Luckily Kate's youngest sister Meredith hopped right on board and I'm grateful for her enthusiasm! While we may be the ones physically enduring our illnesses, it can often be just as hard on the people who love us. After watching my family, friends, and John this past year as I struggled with my health, I'm more sure of that than ever. I'm infinitely grateful for their strength and support no matter where life takes me.

Meredith is 14 years old and in the 9th grade. Soon after I began e-mailing with Kate last year, I was also in touch with Meredith. I've loved learning more about her plethora of interests, but the one we've discussed most is her love of writing. Her work truly illuminates what a uniquely beautiful soul she has. She has even sent me some original poetry, including this poem about my friendship with Kate...

Kate & Maya

Each day’s an unknown abyss,

So deep you can’t see the end,

You just have to stumble blindly through,

And make your way carefully round the bend

No one else quite understands

What you feel each day,

Well, that’s what it had been like

Till you found someone through the haze

Your pain, your anger, your shadow

Is the reason you found each other,

But neither of you would trade it in

For the refuse, the safety, the cover

On different ends of the world,

You live distantly, far away,

But the invisible force that connects you

Beats the distance any day

To get a text in the morning,

or an email at night,

Is better than any medicine,

That helps win the fight

You’re both wonderful people

Fighting the same battle

I will always look up to you,

Like calves look up to cattle,

Strong and courageous,

Knights in shining armour,

Believe it or not,

It’s what you both are

Who in your life is living with chronic illness? Please say a bit about the disease itself and when they were diagnosed.

The person in my life living with chronic illness is my sister, Kate Brabon.  She was diagnosed when she was 22 years old with Ankylosing Spondilytis (AS), which is a form of arthritis that primarily affects the spine, although other joints can become involved (what other joints can become inflamed vary from person to person). It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort.

What is your relationship like? 

Our relationship is very strong.  Kate means the world to me.  I don’t know what I could do without her, without having her by my side everyday.  I know that I would be a very different person if I did not have her in my life.  We do heaps of things together.  Now that I’m back at school, I can’t see her during the day, but often at lunchtime I’m on my phone, and my friends don’t even bother to ask who I’m messaging because they know what the answer is going to be.  Kate. 

Has your relationship changed in any way following their diagnosis? If so, how?

I think it has.  I think that there was a period of time when Kate’s pain controlled her, which put a wall between us.  But over the past year, this wall has been knocked down, and now we are closer than we have ever been.  I think in a way Kate’s illness is a blessing in disguise for a number of reasons, one of them being that now she feels she can talk to me about anything.  And the same goes for me.

What has been the most difficult part of coping with your loved one's illness?

Feeling like you can’t do anything.  Watching them in pain, and not necessarily being able to say that everything will be alright, because you have no control over it.  Talking can be hard too, as it’s not easy knowing what to say, or what the right things to say is. But just keeping positive is the best thing you can do.  You just need to learn that there are actually ways you can help, as little as they may seem.

Where do you get your strength?

Music, writing and other people.  And from learning new things. 

What advice would you give to someone who also cares for an individual living with illness and/or disability? What helps you?

Don’t distance yourself from them.  Even if you feel like they don’t want to be around you, or even if you feel uncomfortable being around them, they need you and they want you there.  When Kate’s pain was first especially bad, I felt uncomfortable because I didn’t understand.  I didn’t know what to say or do. So I didn’t do anything.  I distanced myself from her because I thought she didn’t want my company.  But I learned.  I realised that just being in the room, giving a hug can help.  When we were away on holidays, there was severe humidity everyday, which Kate’s body does not cope well with.  I think she was in more pain that I realised. But because I was on holidays, living in the moment, I wanted to have fun.  So I stayed with her, being cheerful and helping wherever I could.  I realised that having a good mood, and spreading it around is a great way to get her to feel happy.

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

Be supportive and straight to the point.  Don’t let your patient feel like you don’t care, or like they are a bother.  And let them feel welcome to ask questions.  So basically, overall, remember that they are not just a patient, but a person, and you need to be as helpful as you can, giving the best help you can both medically and morally.  

I'm hopeful that Meredith's spotlight will be the first of many. Do YOU love someone who is living or who has lived with a physical or mental chronic illness and/or disability? Would you like to tell your   story? If so, please contact me at mklaub@gmail.com. I'd love to hear from you!

Meredith: Thank you so much for your thoughtful answers and for supporting Kate the way you do. Your presence is a true blessing in her life (and in mine too!)

Love,

Maya