Crucial Spondylitis Awareness Campaign Recently Launched!

"To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live life to the fullest."

-mission statement

I can't say it enough. I'm so profoundly grateful for The Spondylitis Association of America  (SAA), an organization that I wrote about in my May 7th post Spondylitis Awareness & How To Help. The organization is filled with caring people, working tirelessly to fund research, support Spondylitis sufferers like myself and the people who love them, and bring vital awareness to the public.

Far too many times, Spondylitis goes undiagnosed simply because it's not on the public radar. Those who haven't been handed the diagnosis by a skilled professional don't know what to look for don't know what the ramifications of the untreated disease can be. While there is not yet a cure, we are lucky enough to live in a time of fantastic modern medicine. If diagnosed early enough, Spondylitis sufferers can avoid dramatic and permanent damage to their joints like I've managed to do thus far. SAA recognizes this as a great opportunity.

Recently, SAA has begun a campaign aimed at spreading awareness and reaching thousands of undiagnosed sufferers (on 400+ Television stations and even here in the middle of Times Square!) Please Click here to read the press release and view the video about this awesome initiative. So have you had back pain for more than 3 months? A central element of this campaign is this newly released, comprehensive, and free questionnaire developed by physicians to help uncover undiagnosed cases of Spondylitis. It's simple and no personal information is required or collected.

Just a little plug here... please don't forget SAA relies heavily on funding to advance research and work towards a cure for Spondylitis and related auto-immune diseases. Consider donating here to SAA or check out their shop which sells anything from informative books to "Stand Tall" bracelets - inevitable conversation-starters and a great way to spread awareness!

Love, Maya

                                    

A Good Egg

Well it seems the worst of that flare is behind me, thank goodness. After 24 years with Spondylitis, I didn't know it could get that bad - with a fever and everything. The fever really hit something home for me: my body is attacking itself. For all of those fellow sufferers, you may be thinking "well duhh, it's an auto-immune disease" and logically? I know that. I've always known that. But the fever was this weird, very real reminder that my entire body is actually foreign to itself. As you can imagine, that comes with certain emotional ramifications.  

For all intents and purposes, I think I'm a good egg :) I've come into my own over the past few years and really know myself more than ever. I know what kind of mark I want to leave on this world and I think I've already begun. I like myself and I'm confident that people like me. I know I'm worth sticking around for (something that I always struggled with), but there is something about this auto-immune business - the fact that my very body rejects itself - that makes this acceptance a bit difficult at times.

The 20s are supposed to be this time of self-discovery, right? Learning and growing and building a life of your own.. a career, lasting relationships, a name for yourself,  that sort of thing. So while it's supposed to be an exciting time (and mostly it is), it also seems like a lot of pressure. Fighting illness simultaneously makes it even more complicated and, as I was sitting around this weekend fighting off  tears, I had some tough thoughts about myself: So if my body thinks it's the enemy, was I some cosmic mistake? A rough draft of sorts? 

Silly, I know. Oh where oh where has that confident-sounding blogger gone? But that kind of pain tends to send your mind in all kinds of directions, unearthing insecurities you didn't even know you had. I wish I could put my mind on pause during those times. I wish I could just relax and be kind to myself like I would with anyone else going through the same thing. I wish I could trust that the flare will end.

The truth is, I don't know what I'll be able to do in a few years. I don't know if the stresses inherent to social work are in the cards for me or if I'll be completely independent financially. I don't know how much I'll need to rely on others or if I'll ever be well enough to create someone who can rely on me. I don't know what my body will face or the course this disease will take. But, at the end of the day, who really knows these things? Life is unpredictable just like disease and what I do know is that I know myself. I believe in myself and that means a lot. I didn't do a great job of holding on to this truth during this latest flare, so the trick will be remembering that through the good, the bad and the ugly.... 

A big thank you to all of my wonderful readers that sent words of encouragement during a tough week. I feel very lucky to have you.

Love,

Maya

I Want To Breathe Deeply & Sing Loudly

I usually give it about 5 days before I call a bad period a "flare", and now it's been over a week. As I mentioned in my last post, the nature of this pain is the worst and most widespread it's ever been and it seems to just be progressing. I can barely move my neck or get around today and was forced to cancel a weekend trip to see my closest college friends. 

I don't write this post looking for sympathy and, in fact, I don't know anyone living with chronic pain that wants that. I'm writing today - as I am - because I think I have an obligation to be honest. After all, I set out on this blogging adventure to tell my story...for better or for worse...and I can't pretend this pain isn't disappointing, depressing or scary. It is. John and my family have reminded me that I've done more this summer than most healthy people could and I need to give myself a break. I hear them, but it's a little more complicated than that. I resent this growing inability to plan and, at the moment, I don't feel like I have control over my body or my future. 

These trips and visits with friends are a blast, of course, but they're a lot more than fun. They're my attempt to freeze things and hold onto normalcy. They're what I wish for. I can dole out advice and reassurance to others until the cows come home, but what's the point if I don't allow my own words sink in? I need to slow down and not feel bad for feeling bad. The thing is, it's terribly obvious lately that I can't do the same things I used to and, while I don't tend to dwell on what's been "taken" from me, that's where I am right now. I can't ignore flares anymore and it's hard for many people to understand how things have changed (me, most of all).

Changing gears, I've really connected with one of my readers whose name is Betsy. She's a gem and, besides being a wife, a wonderful mother, and an avid volunteer, she also lives with Spondylitis and significant pain. To add to our similarities, she's also interested in pursuing her masters in social work. Recently in an e-mail exchange, Betsy shared this poem with me that's quite in line with my recent thinking...

I want to open my arms wide

and embrace life in all of its goodness

and all of its badness

because i believe the good outweighs the bad--

for always and forever.

I want to breathe deeply

and sing loudly

and love passionately

and believe absolutely

and see fully what's really important.

I want to live big. I want to laugh big. I want to love big. I want life to know i was here.

And somehow make a difference the the process.

--By Debra Klingsporn, adapted from The Journals of Rachel Schott

Love,

Maya

As We Are

If you look to the right, you'll see the various labels I file my posts under - one of which is called "Silver Linings." It's obvious by now that I typically search them out. They help me make sense of the pain I'm consistently facing, the dramatic ups and downs of this disease, and typically I can find them without much effort. Monday was not one of those days. It's important not to let the disease beat us down, but it's also imperative to be realistic. We can't waste precious energy or spoons by trying to play Pollyanna because let's face it - sometimes, in the wake of great pain, it can be downright impossible to stay positive in our own heads. Sometimes we've got to just....be.

If you follow my blog, you can easily see the erratic nature of Spondylitis. So much can change from post to post and, while one day I might be climbing the hills of Italy, the next I might be struggling to walk at all. I've pushed it lately with various visits and trips, but on Monday and part of Tuesday I was in the kind of pain that I forgot was possible. After a restless night, I woke up startled and actually scared by how I was feeling.  I could barely move and it truly felt as if I was being stabbed in every joint and muscle. At the same time, I could feel each vertebrae and rib aching and burning so deeply that it was hard to breathe. The nature of my pain has changed over these past couple of years. It has never been this intense and, although I'm quite familiar with pain, I just can't ignore or assimilate to this. In fact, I refuse to. It's not easy to admit, but this kind of pain is often accompanied by a waterfall of dark thoughts: How can I even get dressed today, let alone be a social worker? How can I possibly be a successful wife or mother? How can I stand this pain for the rest of my life? What if I just become a burden to those I love? 

My dad was just leaving for work when I made my way downstairs. He and my mom are extremely talented at reading my face when I'm in pain...I'm pretty sure it's a "parent thing." He sat down with me, reminding me that I've had very bad periods before and that I've always gotten through them. He told me that it's easy to feel like it's permanent when you're in the midst of suffering and he made sure I knew how strong I was - that I also have great love and support to get me through the harder times in my life. I told him the fears that my mind indulges on days like that and he urged me not to get too far ahead of myself. That sort of worrying can also increase inflammation, so of course he's right. It's got to be one step at a time...one stiff-legged step at a time. It's the only way. He also reminded me that a big thunderstorm was on its way, so at least there was a reason for the dramatic shift in my body.

I believe I can be doing better than this and I'm going to fight for it. The truth is, though, no matter what happens I'm endlessly lucky to have this kind of love in my life: the family that would go to the ends of the earth, the boyfriend who would do the same, and incredible friends who will just listen and lighten the load. They remind me that I don't need to put on a show and, as the disease takes its course, this is an invaluable gift. Chronic illness is rough. Sometimes we just need to let ourselves be less than positive - to know it's okay to come as we are.

On these days...on days when it's a struggle to see the reason behind the illness...what keeps you grounded and strong? What keeps you going? 

Love,

Maya

My "Amazing Lady Tour" of Upstate New York

Me and the grill master

I spent the week on an "Amazing Lady Tour", as I like to call it. It had been a year since I last saw Miss Mary Bowers , my former camper and current friend who I first met at Sunshine Camp  8 years ago. She lives just outside of Binghamton, NY, so the drive up from John's apartment was just under 4 hours. I spent the evening catching up with Mary, her awesome mom Pam, and her lovely greyhound Kato. We enjoyed a phenomenal home cooked dinner and, on top of her other talents, I found out that Mary has quite the knack for grilling.

Kato's model shot

I was planning on visiting Mary this summer anyway, but when I found out she had her bi-annual medical appointments in Rochester (15 minutes from John's family's house), I jumped on the opportunity to take her up. Why not coordinate a little camp reunion, right? The morning after I arrived, we woke up at 5:15am (admittedly, the whole plan seemed a little less fantastic to both of us at this hour) and set out on our road trip. I had a blast with Mary as always and quickly remembered just how hilarious she is. The best part of the trip was the good medical news she received from her doctors (Go Mary!) After that, we could both fully enjoy our time.

Sara and Rayne

A priceless smile

We spent a great night with John's parents, his sisters Sara and Laura, and some of their friends. We also had another great meal a la John's mom. Mary and I even had the chance to watch Sara horseback ride the following morning! She rides at an amazing place called the EquiCenter in Honeoye Falls, NY.

Sara & her best bud Marian

The EquiCenter seeks to offer "a number of therapeutic riding, hippotherapy, vaulting and horsemanship (equine facilitated mental health) sessions" with the goal of "provide[ing] a safe, appropriate, productive and enjoyable environment where participants can work toward their individual goals." The pictures don't quite do it justice. Seeing Sara's tremendous smile and clear look of pride was easily worth the trip. It was incredible to watch her horse (Rayne) work with her and the instructor, gently accommodating her specific needs. It also turns out that Rayne is quite the ham in front of cameras after being exposed to so many photo sessions. The experience made me even more sure that I'll use animals in my social work practice one day. They are invaluable, calming beings and I could go on for pages about my respect for them.

Sara & part of her cheering section

Sarah & Mary, Sisterly love

After the lesson, Mary and I continued on to Syracuse to visit her older sister Sarah, yet another one of my favorite women. I met Sarah as a fellow counselor at camp the same summer that I met Mary. I was impressed with her ever since. Sarah is just so fun to be around and she recently received her Masters in Social Work. Actually, she was a big reason I decided to go for my degree. We had a great lunch, but I wish we could have stayed longer. We continued on to Mary's home where we had to say our goodbyes and then it was back home to Long Island.


Since returning home, every joint in my body has seemed to lecture me on the hazards of long road trips. I've spent a lot of time napping and in bed this weekend, but you know what? It was more than worth it. Even if the trip took a lot out of me physically, it was one of those experiences that was so emotionally and spiritually restorative that the physical pain is overshadowed. Thank you to all the fabulous women who were part of my week. I only wish we could do it more often.


Love,
Maya

Wonderful Guest Post by Author Sue Ingebretson

The Birth of a Book

I jumped at the opportunity to guest post on Maya’s blog, Loving with Chronic Illness. Her themes of persistence, passion, and joy in all circumstances are concepts I truly admire. Sharing ideas about healing (from rheumatoid arthritis, chronic fatigue syndrome, lupus, fibromyalgia, diabetes, multiple sclerosis, Crohn’s disease, various autoimmune conditions, etc.) is my favorite activity! 

I am a writer/speaker and if you haven’t seen me speak locally, you can find me online. My website and blog is located at  www.rebuildingwellness.com and I’m busy on social networking sites, too. Find me on Facebook and Twitter as Sue Ingebretson and @SueInge. My book, FibroWHYalgia, has its own Facebook page as well as the website listed above.

I never thought writing and speaking on health issues would be my life’s work. But then life doesn’t always turn out as planned, does it? Years ago, I enjoyed writing projects and belonged to a children’s writers group. I worked hard at my craft; I found it cathartic to write.

I also spoke at various groups about health and healing. I learned that when people know you as a very sick person, and then see you as a very “well” person, they want you to spill the beans. At local churches and hospitals, I detailed my personal journey from illness to wellness. I found myself spending an increased amount of time answering phone calls, emails, and questions after events and monthly support group meeting. It became clear that I had to shift gears in my writing world and start a non-fiction project. I called it, my little Health Book.

I’ve been asked why I didn’t write this book years ago when I started to get well. I think I was just so relieved to find the pain and fatigue slip away that I wanted my former “sick” life to slip away, too. Writing about it brought it all back. 

I wrote the last two-thirds of my book first; it poured out relatively quickly. It’s easy to hop into the role of a sharing friend. The beginning –- where I tell my personal story – took me ages to write. I labored over it. Each time I sat down to write about the pain and misery I endured, it all came back to me. The memories flooded my mind and my body. I felt those memories in every muscle, bone, and nerve. 

So, I’d write a little, and then try to shake it off. I’d do something nurturing like taking a long walk or practicing tai chi. After a certain point, however, I knew I’d have to knuckle down or I’d never finish. I bulldozed through the process. It took eleven months to write my entire first draft and then another two years (and then some!) to edit, edit, edit. It’s funny that the part that took me the longest to write is now whittled down to just a few segments. Writing is a lot like bacon -- how it begins looks nothing like the finished product.

The final result is my book, FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness. Although it may sound like it, my book isn’t only about Fibromyalgia. The root causes of chronic illness (and the methods and treatments needed to heal those causes), are universal. The themes it contains can help all who seek improved health. My title stemmed from a deep, personal sense of curiosity. I wanted to know why I was sick. That led to a better understanding of how chronic illness begins and, of course, a better understanding of what to do about it. Asking why is always a good place to start.

These days, I write and speak on the subjects of health, wellness, and encouragements to heal. I give talks and workshops about nutrition, restoring digestive health, stress-management, aging, and preventing illness. I’m now the director of program development for the Fibromyalgia Research and Education Center at California State University in Fullerton. It’s my particular passion to speak to young moms and students as the lifestyle changes they make affect future generations. Of course, the most efficient way to attack chronic illness is to keep it from starting in the first place. 

Because I am a small-time author, getting the word out about my book is a challenge. I’m thankful for bloggers and reviewers, like Maya, who help me share my passion. Please contact me at  Sue@RebuildingWellness.com if you have thoughts/ideas on how to help spread this mission of healing. I’m always thankful for new ideas. And, of course, if you feel you’ve benefited from my book, I’d be pleased if you’d write a review on Amazon or B&N.

You can find FibroWHYalgia, on my site, www.RebuildingWellness.com, Amazon.com, and BarnesandNoble.com. There are numerous stores nearby where it can be purchased so contact me for the list if you live in Southern California. Shopping online is easier than ever, though. By using the Look Inside feature on Amazon, you can even peruse my book’s Table of Contents and poke around to your heart’s content.

It’s my hope that those who read my book will be entertained, educated, and most of all, encouraged to make healthy lifestyle changes. Change can be a very GOOD thing!

(Thank you so much Sue! Please feel free to comment, my lovely readers.)

Love, Maya)

Take 1 Minute & Help Fund Muscular Dystrophy Research!

I've written before about Muscular Dystrophy , a term that refers to a 30 + progressive, genetic diseases that weaken the muscles and systems of the body. Muscular Dystrophy has been part of my life since I first volunteered at Sunshine Rotary Camp in 2003 - a camp for kids living with all forms of this disease. It's a place that I wrote about in my post, A Special Place for Special Kids and a place that brought incredible people into my life (a good example being Miss Mary). Not a day goes by when I don't think of the strength, courage and kindness these campers have. It guides me tremendously.

Jon Gardner  (currently living with Duchenne 

Muscular Dystrophy & John Ferrarone,

MDA camp 2005

These diseases affect some of the people I love most. 

My aunt's brother Rob (one of my dearest pen pals and friends) lives with a form called Myotonic Muscular Dystrophy. He's a hero if I've ever known one, looking for the good in everything.  Additionally,  both of John's amazing sisters, Sara and Laura, have a form called Friedreich's Ataxia . Quite frankly, Muscular Dystrophy needs to take a long, permanent hike, so let's all give it a little push...

Rob Wolfinger
 (living with Muscular Dystrophy)
& my aunt Rose

You may have heard of Pepsi Refresh , a fantastic project that funds "good ideas" by ordinary people. Pepsi chooses 1,000 ideas every month and it's up to the public to pick the winners. It's as simple as that! The grant categories are "Health", "Arts & Culture", Food & Shelter", The Planet". "Neighborhoods", "Education" and the grant amounts range from $5,000-$250,000.

One of the ideas selected this month was submitted by the Jett Foundation requesting $250,000 in grant money to fund one year of research for Duchenne Muscular Dystrophy (DMD). Currently there is no cure for DMD, the most common and severe form of Muscular Dystrophy and the leading fatal genetic disorder of children. Sadly, the life expectancy of individuals living with DMD ranges only from late teens to mid-30s. Just think what $250,000 could do in working toward a treatment and cure for this disease and other forms of Muscular Dystrophy!

Me & the wonderful Eric Grammas
(passed away at age 24 from Duchenne Muscular Dystrophy), camp 2003

Currently, the Jett Foundation's project is ranked 19th and needs to come in the top 2 to receive the money. You can help. Just click here , vote to fund this project every day and as much as you can before July 31st, and please pass it on! Thanks so much everyone.

Love,

Joy For No Reason (A Poem)

I hope everyone had safe and happy long weekends! Mine was spent lounging by the pool with John, at dinner tables with family, and watching fireworks from a beach where you can catch 5-10 shows at once if you can spin around fast enough. The older I get, the more I appreciate summer days like the ones we  had this weekend. They feel good on the joints and on the soul.

This weekend, I also came across a poem I once put away for "safe keeping" in an old box, tucked among an odd mixture of baby shoes, birthday cards, and other mementos from various stages of my life. While re-reading it, I was brought back to my senior year of college (a time I wrote about in my post Staying Tuned In). To date, it was the hardest time of my life, and also consequently when my love for poetry really took off. I've written before about the Strength of Poetry in my life, but today I offer up this poem with the hope that it can have a similar effect on someone out there. I remember unfolding it on mornings that were hard to face. I came to it for perspective in the face of pain and a simple reminder that life was good.

Joy For No Reason

I am filled with quiet
joy for no reason save
the fact that I’m alive.
The message I receive
is clear – there’s no time
to lose from loving, no
place but here to offer
kindness, no day but this
to be my true, unfettered
self and pass the flame
from heart to heart. This
is the only moment that
exists – so simple, so
exquisite, and so real.

Danna Faulds

Jodi McKee & The Autoimmune Portrait Project

Jodi McKee has quickly become one of my heroes. Among other things, she's a talented photographer, a wife, a friend, a Rheumatoid Arthritis patient, and just a wonderful person.

I was lucky enough to stumble upon Jodi's work a few months back and have to share her with you all. She has a wide range of subjects and interests, but one of my favorite sets of photos is called "64 colors " - a project she developed with her friend that presents a "a diptych each week inspired by the names and colors found in the sixty-four pack of crayola crayons." Her work is amazing...take a look around!

Week 2 of 64 Colors: Red

Jodi's  Autoimmune Portrait Project (yep, that's me on June 3rd) is what really drew me to her. Her goal is to portray the often vibrant, strong faces of chronic illness and bring awareness to a world that often can't believe disease could reside there. She writes, "My hope is that I can spread the word about all of the younger people out there who are dealing with these chronic, often painful, illnesses. Also, I think it is very important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not the only one out there."

It took me about - oh a minute - to know I wanted to be part of this project. While I can't say I like having my photo taken,  Jodi made the experience so enjoyable. It was awesome to spend those hours with her and I felt understood in a pretty fantastic way. Among other reasons, I think it was that "arthritis connection" between us. It was unspoken, but it was there. If we needed to stop and rest, we just did. We talked and laughed and met a puppy named Randolph. I'm excited to do it again.

Living with Rheumatoid Arthritis hasn't been easy, but Jodi has obviously found tremendous purpose in her diagnosis. She has a certain grace about her and I think this project speaks to the special person she is. Thanks for everything you do, Jodi!

Love,

Maya