Love As A Painkiller

Even when I was enduring my worst pain last year, I'd immediately feel better as soon as John was nearby. I know that sounds cheesy, but his presence made me feel like a million bucks: warmer, more comfortable, and as if I had just taken a double dose of painkillers. I'm always telling John that he's the "best medicine out there" and, as it turns out, there's a scientific reason for that...

"In a study involving a group of lovelorn Stanford undergrads, researchers discovered that high-octane romantic love might be a natural analgesic." Check out the article: Romantic Love: Nature's Painkiller?

If romantic love isn't an option right now, check out this article in Arthritis Today: Pain Relief Without Pills, Learn 15 ways to go beyond the bottle to conquer arthritis pain. I'm wishing everyone pain-free days, no matter how you get there.

Love,

Maya

Sky's The Limit, If You Say So

When Chronicbabe.com issued the latest topic for their blog carnival - "I Can Do It: something you thought chronic illness would never let you do until you mustered up the courage and went for it" - my first thought was travel. I fell in love with seeing this world many years ago and, although Spondylitis has made it significantly more challenging, I've still done it. There are ways around illness, especially if our hearts are in it. I've also been lucky enough to have a family that not only values travel, but has been able to give me these opportunities over the years. 

When I wrote the post abut my grandfather's life, I recalled first visiting Europe with him and my grandmother. Together, they took our entire family on an incredible trip to Grindewald, Switzerland and Annecy, France. Not only did I get to meet my European relatives for the first time, but I also remember my love of travel taking hold on that trip. I took a million photographs and collected everything I could to bring back to the States (including a wide array of sugar packets). I loved everything about being in a new country: being surrounded by new people, listening to new languages, and just being immersed in such a different culture. Everything was fresh and exciting and there seemed to be adventure around every corner. From then on, travel was in my blood.

Attending Colby College also afforded me all kinds of opportunities, particularly in the way of travel. Through the Colby College chorale, I was able to prepare a year's worth of music and travel to Vienna, Austriaand Prague, Czech Republic in 2005 during my freshman year! My favorite moments were busking in random archways, streets, and cathedrals as impromptu crowds gathered around. Surrounded by friends, new adventures, and beautiful music, it was one of the most amazing trips of my life. 

As the years passed and my disease progressed, travel became more difficult. I was placed on a strict regiment of weekly Enbrel injections , so I couldn't just take off for weeks at a time without really considering the logistics. During "Jan Plan" at Colby (a month-long semester during January in which students must participate in something...a class, a trip, etc.), the Spanish Department was offering language credits for studying and living in Quito, Ecuador. What better way to learn the language? I signed right up!

Since I would be gone for four weeks, I had to consider how I could transport and receive my injections while I was there. Luckily, Colby was able to set me up with a wonderful family of four. Both parents were doctors and could administer my injections! This certainly put my mind at ease. They also had two awesome kids, their son Juan Carlos and their older daughter Maya (incidentally, I would affectionately be called "Maya numero dos"). I attended school in Quito during the week and used the weekends to travel. A few friends and I also volunteered at a local orphanage, which planted the seed in my head for adopting my child one day. Another highlight of the month was a four day trip to Banos - a town known for being a holiday centre, both for Ecuadorian families and for backpackers. It’s a great place for cycling, hiking, white water rafting and the hot baths that give the town it’s name. I remember taking a pretty wild bus tour around winding mountain passes, driving from waterfall to waterfall and hiking to get closer to them. It was an incredible month and like nothing I'd ever experienced before.

In 2007 when I was a junior at Colby, I had the opportunity to study abroad for an entire semester! My brother had studied in Sydney, Australia four years earlier and loved it. As the second child, I've always had an innate drive to do everything just a little bit differently from Josh....so, instead of Sydney, I decided that Melbourne, Australia was more "me." It was an awesome choice, and I spent the majority of those 5 months having new and extraordinary adventures. My favorite part was, of course, the plethora of adorable animals that live in Australia. As you can imagine, it was my heaven. Getting there with my injections (that had to be refrigerated) was easier said than done. I remember my grueling trip to Melbourne like it was yesterday: a 5 hour flight to Los Angeles, a 7 hour layover in the airport, a 14 hour flight to Brisbane, 2 days of orientation, and finally a 2 hour flight to Melbourne. Somehow I managed to protect my precious injections throughout all of it - a feat that still baffles me. 

While other American students arrived in Melbourne and immediately set out to explore the city, my first order of business was to head to the local hospital (Royal Children's Hospital) and ensure that my medication was refrigerated. Each week I would travel to that hospital which took nearly 2 hours roundtrip via public transit, but it was more than worth it. While the regimen wasn't easy to maintain, I felt great for the majority of my time down under. I was able to travel to the Great Barrier Reef over spring break which was one of the best experiences of my life! Since visiting the reef is typically a once in a lifetime sort of thing, I decided to try scuba diving. It was just as beautiful as I anticipated and I could hardly believe I was so close to this incredible, colorful sea life I'd always seen in photos. However, while I was underwater I scraped my shin on a local species of coral. Before I even reached the mainland, it promptly got infected and started to burn. Since the bacteria was so foreign to my body, the infection didn't respond to antibiotics and soon my Spondylitis reared its ugly head. I had to stop taking my injections since they suppress the immune system and soon I was in the worst flare up I'd experienced up until that point. The infection spread up my entire leg and sadly I spent the majority of my final month in bed. 

As soon as the semester was over, my parents and my brother Josh met me in Melbourne! It was amazing to see them. We travelled around Australia for several days and I was able to take them to some of my favorite spots (including the 12 Apostles). Then we were off to New Zealand! We drove around the country and made some incredible memories, experiencing  both the north and south islands. We visited Auckland, Christchurch, Queenstown (home of the first bungee jump), gorgeous Milford Sound, and Mount Cook (the highest mountain in New Zealand, reaching a height of 12,316 ft.) The beauty of both Australia and New Zealand is truly impossible to describe in words.

During the spring of that same year, I was also able to visit Italy for the first time with the Colby chorale! We travelled around the country, stopping in Rome, Florence, and Lake Como for various concerts. We sang in awe-inspiring venues, including the American Embassy in Rome, The Duomo in Florence, and St. Peter's Basilica in Vatican City! These are experiences I cherish and, just as we had done in Prague and Vienna, my friends and I often busked along gorgeous cobbled streets. As long as I live, I will never forget those 10 days. Although I was able to extend the time between my injections by a few days, I certainly began to feel the inflammation returning by the end of the trip. As much as I wanted to stay, it was a relief to get home to my medication.  Three and a half years later, I would be lucky enough to return to Italy with John and the Ferrarones ! This time, I received two Humira injections the week before leaving and it seemed to make a difference. 

What's the reason for sharing my travels in such detail? To show that, even with chronic illness, you don't have to give up on your dreams, especially if you have some awesome support. I'm sending a huge thank you to my incredible parents who gave me that little extra help and courage to make these journeys, even when they seemed like more trouble than they were worth. They were and always will be worth it...

Love,

Maya  

Happy Birthday To My Blog & The Winner Is...

Happy 1st Birthday

  to 

Loving With Chronic Illness!!!

(yup, that's a computer made entirely out of cake!) ---->

                                

When I began Loving With Chronic Illness, I vowed to write from my heart...through the good, the bad, and the ugly. I don't think it's any coincidence that I began this project in 2010 - the year that would prove to be the most challenging for me, both physically and mentally. As it turns out, my medication (Humira) stopped working shortly after I began writing last March. I'm usually awed by how quickly times passes, but that was not the case in 2010. I was acutely aware of each week and each month that ticked by. It was a year that brought moments of extreme joy, and intense sorrow; my family saw new beginnings and difficult endings; we made big decisions and had new adventures. But even my brother's wedding, visits to see friends, my amazing trip to Italy, beach days, and family holidays (some of the happiest occasions of last year) didn't just fly by. To be honest, it was often a struggle to keep going.

As I sit back and reflect upon what Loving With Chronic Illness has come to mean in my life, I'm overwhelmed. Without this blog, the past 12 months would have felt much longer and lonelier. I wouldn't have made some of my closest connections, nor would I have found and spent two incredible weeks with my "Australian sister", Kate Brabon. After living 25 years with Spondylitis, this blog has finally allowed me to be truly open about my experiences. It has brought my personal relationships to a place of deeper understanding, helped me take pride in my journey, and aided me in sorting through both the pain and the triumphs. Additionally, it's provided me with the time and space to process the intricacies of living with illness and, on a more practical level, it has helped me track the progression of my health.

Although it was a struggle to write through the pain, I stuck to my word. I discovered that my honesty was the quality that people valued most in my posts and I felt honored to hear their stories in return. In just one year, this blog has evolved in several different directions, thanks to the extraordinary people I've connected with. The development of my "Spotlight Series" has allowed me the honor of introducing several warriors of chronic illness. I've learned so much from their wisdom, felt humbled by their words, and have made connections to last a lifetime.

To celebrate reaching the one year mark, I want to announce the winner of my first giveaway! (Note: this winner was chosen 100% fairly by an online randomizer)....drum roll please?

Angie P.!

Congratulations!! Please contact me by e-mail (mklaub@gmail.com) and I will let you know how to claim your bracelet. I'm sending a big thank you to Michelle Miller-Anderson for making this giveaway possible and to everyone else who participated. I'm in the process of setting up some other giveaways, so stay tuned!

Love,

Maya

Spotlight on Megan Bonstein: Candidate For Woman of The Year!!!

My friend and classmate, Megan Bonstein, is quite simply an incredible woman. As a two-year survivor of chronic myelogenous leukemia (CML), she is "thrilled and honored to be a candidate for the Leukemia & Lymphoma Society's Woman of the Year for the New York City Chapter!" Her spotlight is below, so you can read more about her amazing story. The campaign kicked off on March 10 and will end on May 19.  Each dollar that Megan raises for LLS counts as a "vote" and the candidate with the most "votes" is named as the Man or Woman of the Year. Please read more about Megan and consider donating to Team "MegaHope: Gratefully Giving Back!" Below you'll find an interview I did with Megan - first about her campaign and then about living with chronic illness! Enjoy...

Click here for Megan's awesome site & to donate!

What made you go for this now? 

What better time than now?  This campaign is a great opportunity.  I decided to accept my nomination for many reasons.  I really want to raise money that will directly impact people's lives, and with my personal connection, impacting patients and survivors of blood cancer has special meaning to me.  I believe that direct impact can happen with the Man and Woman of the Year Campaign.  I just passed my two-year anniversary of my CML diagnosis.  Being a candidate is the ideal way for me to raise awareness, give back, and mark my two-year anniversary.  Luckily, the campaign team is from all over the Eastern United States, so we can get the word out in many communities.  The goal is to raise money that will create life-saving possibilities through new research while building on some of the current successes in treatment that have helped people like me.  I'm very excited to get started.

What would it mean to you if you won? 

As my boyfriend Elliott said, "whoever wins, blood cancer loses!"  I agree!  It's a tremendous honor just to be a candidate.  It would bring me great joy to win Woman of the Year, mostly because it would mean my campaign team and I worked hard and were able to raise a large amount of significantly needed funds.  Also, it would allow me to continue raising awareness and advocacy in a unique role.

How can readers help you? 

Readers can vote for me starting March 10 by making a donation, and passing on the website to friends or families who may be interested in learning more, making a donation, or otherwise getting involved.  Any contribution is deeply appreciated.  We will also be having events in different locations around the country, so stay tuned for updates.  If any readers have questions or ideas of ways to get further involved, contact me at megansue@gmail.com. 

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

Endometriosis - Diagnosed 11/11/08.  Age 24. 

Chronic Myelogenous Leukemia (CML) - Diagnosed 1/27/09.  Age 24. These conditions are not thought to be related in any way, 

however the process of diagnoses was related.  I had undiagnosed pelvic pain and heavy periods for years, then started having problems with rupturing ovarian cysts.  Finally I received a diagnostic laparoscopy -- a minor outpatient surgery which resulted in the discovery of endometriosis.  After the surgery, I had extensive bruising across my abdomen and pelvic region.  Having never had surgery before other than as a baby (which I don't remember) and on my wisdom teeth, I did not know that the bruising was significantly more than "normal" until I had a follow up with the OB/GYN who performed the surgery.  She saw the bruising and urged me to see a hematologist.  The hematologist I originally saw found the actual mutation in my blood that causes CML (the Philadelphia chromosome), and I was diagnosed and referred to a specialist at the Weill-Cornell Leukemia Program.

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

For someone diagnosed with any chronic illness (including endometriosis and CML), there are a few things I would say:

First of all, you are not alone. No two people have the same exact experience even if they are the same age and diagnosis, but there are others out there who can relate. Getting involved and reach our to find others with the same (or similar) illness can be very empowering.  The loneliness and isolation that can accompany chronic illness may not ever go away completely, but it has helped me tremendous to plug into communities where there are others going through similar things. By getting involved and meeting others with your same diagnosis, there is a lot of reciprocal education that can occur about treatments, side effects, new research findings, etc. This wil help a person get information and support, and also an opportunity to give information and support to others. And getting involved is also a great way to form friendships where the disease is NOT always the topics of conversation even if there is a shared diagnosis. Reading about the newest illness-related events, research, etc. is very helpful, but it took me a while to be able to do that without feeling overwhelmed. 

Experiencing chronic illness is overwhelming and it can be a major bummer. It can bring on so many emotions. Don't apologize for any of this and don't feel afraid to find a safe place to talk about what you're going through. Make sure you voice your concerns to doctors/nurses.medical professionals. Be your own advocare, and if you feel it is helpful, bring a friend or family members to your doctor's appointments. As much as no one would "Sign up" for any chronic illness, I do believe with all the ups and downs, it builds enormous inner strength. You are so much stronger than you will probably ever know.

Please explain a bit how your condition affects you. 

Endometriosis: The cause of endometriosis is unknown and there is no cure.  I have most likely been experiencing endometriosis since puberty.  For me, the symptoms have historically included very heavy, painful periods, cramps throughout the month, bloating, abdominal pain, pelvic pain, ovarian cyst ruptures, and fatigue.  Endometriosis is thought to be an immune disorder, and may explain the fact that I have always been susceptible to "catching whatever's going around."  Since being on continual hormonal treatment, I no longer have 

a monthly period, so menstrual-related symptoms are much lessened.  All other symptoms remain present but improved.  There are times when I have  hot water bottle on my belly for days, and times when I barely notice any pain.  I have personally found acupuncture to be helpful for pain management. There is a significant chance that my fertility could be compromised by endometriosis, but I won't know that unless I decide to try for children.

CML:  The cause of CML is unknown in my case, and there is no cure.  The only potential symptom of CML  I ever displayed was bruising.  I had been feeling a bit of fatigue around the time of diagnosis, but that was not out of the ordinary for me for years, so it could have been due to the endometriosis.  More than ten years ago, CML was usually treated with a bone marrow transplant, which is a very risky procedure.  Since the advent of Gleevec, the first of a class of drugs called Tyrosine Kinase Inhibitors (TKIs), CML patients have often been treated instead with TKIs.  The survival rate has gone way up with this new class of drugs.  They may be sometimes referred to as "soft 

chemo" and are taken orally.  I was very lucky to never be hospitalized long term, never go through traditional chemo or raidiation with hair loss.  That being said, I did not tolerate treatment well initially. As a chronic cancer, this is a cancer people which people "live with" on treatment indefinitely.  The biggest problem has been dealing with side 

effects.   I was first put on the TKI Gleevec, which caused severe rash, headache, extreme bone and joint pain, thinning hair, muscle cramps, 

anemia, vomiting, diarrhea AND constipation, puffiness around 

the eyes, bloating.  Even with these side effects, the Gleevec was incredibly effective at fighting the CML and I had a complete molecular response within about eight months.  I am so grateful for the swift response to treatment I had.  Once the leukemia was deemed undetectable, I was eventually switched to Tasigna, a newer TKI.  Thankfully, I have tolerated it much better, but continue to live with side effects--mostly joint pain and muscle cramps.  The biggest change over time has been the improvement of my day-to-day living with the change of my treatment.  If I decide to have children, there will very likely be some challenges as I should not be off treatment for a very long period of time but cannot be pregnant on any TKI.

The hardest thing to cope with for me is knowing if and when it's

 appropriate to share the fact that I am living with chronic illness.  I am very interested in speaking with people living with multiple chronic illnesses, because I am certain there are many people out there who fit that description.  My life has been deeply impacted by chronic illness and I am not ashamed of that, but it is also not definitive of who I am, so separating all that out can be challenging.  Another very hard thing is just the fact that life feels a lot more unpredictable as a direct cause of chronic illness.

What are 3 things you couldn't live without? 

Family, friends, and creativity.

What are you most proud of? 

How far I've come.  I could say much more about this, but in the simplest terms, that is what I'm most proud of.

Where do you get your strength? 

My family and friends are incredibly supportive.  I have found strength within myself as I've continued to do lots of soul-searching and as I've continued to strive for optimum wellness. Being involved with people and organizations, plugging into the community gives me strength, whether it's a chronic illness community or not.  Having opportunities to be creative is incredibly empowering (whether it's writing, photography, drawing, designing, etc.).

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

To the medical professionals who have positively impacted my life, thank you!  To all medical professionals:  I hope as all my good doctors have done, you will listen to and be present with your patients; it is an integral part of care.  Please keep up the 

good work on finding life-changing treatments and cures...and 

thank you for your long hours and dedication!

 Thank you so much Megan! You're a true role model and we'll be cheering you on!

Love,

Maya