Versatile Blogger Award

Slowly, but surely I'm connecting with more and more wonderful readers and developing an even stronger support network. I feel very grateful for this. I've even met and have plans to meet some of them in the real world! These friends are real and they're friends I deeply admire - not just because of their battles with illness, but because of the good and impressive people they are. Thus, receiving my first blog award from three readers meant even more. I want to extend a big thank you to Jasmine from Jasmine's Cove , Diane from A Stellarlife , and Dana from I Already Gave My Right Arm To Be Ambidextrous . There are three steps to accepting the award...

Step 1: Recognize the person or people who gave you this award

Jasmine's blog was the first blog about chronic illness that I ever read. Her work inspired me to start Loving With Chronic Illness. Jasmine battles with multiple diagnoses, including chronic migraines and Fibromyalgia and, with post titles like "Partly Cloudy With A Chance of Migraines ", she brings a light, yet crucial perspective. Jasmine, thank you not only for your recognition and support, but for your honest and important writing. 

Diane bravely discusses her life with Multiple Sclerosis, along with important disability issues (A topic that is near and dear to my own heart), current events, health issues, and also just plain silliness. Her latest post, "Falling with MS, Old Age and Disability: It's About Getting Up, Stupid! " highlights her unique voice, her strength, and her humor in the face of serious illness. She is the definition of a versatile blogger and I look forward to each of her posts - I'm always a bit better after reading them.

Dana also battles with multiple diagnoses, including psoriatic arthritis, sjogren's, and fibromyalgia. She writes, "Just when one thing seems to be doing better, something else goes downhill!" However, it seems that doesn't detour her from fighting. Dana writes, "I am 35 years old, have been married nearly 10 years, and my husband and I are in the process of adopting our first child! I have a lot on my plate right now, but I take it one moment at a time. I believe that God will never give me more than I can handle. However, I do need to learn to ask for help sometimes instead of always doing it by myself." Good lessons for anyone to learn - healthy or not. Thank you Dana!

Step 2: Share Seven Things About Yourself

I like to sit in New York City dog parks for hours meeting new pooches. I've been told it's okay to do this (even without owning a dog), but I still get strange glances from overprotective owners ;) 

Strawberry shortcake is a very serious weakness of mine, as well as reality TV.

I've lived in three continents for a period of time, and have a burning desire to see the rest of the world.

I'm a licensed New York State Wildlife Rehabilitator, along with both my mom and my dad.

Even though I love traveling, flying is my single greatest fear. 

I've been singing my whole life, whether it was the high school chamber choir, my college a cappella group, or in the shower. It reminds me of all the good my body's still capable of.

My first job was working in an animal shelter (surprise, surprise)

Step 3: Pass the award onto 15 bloggers whom you have recently discovered and think are fantastic!

Neil at 1,000 Awesome Things 

Jenny & Olivia at Lovely at Your Side 

Jodi at  Jodi McKee Photography 

Cathy at The Life And Adventures of Catepoo 

RA Guy at Rheumatoid Arthritis Guy 

Lana at Living It, Loving It 

Nessie at Lipstick, perfume and too many pills 

Carly at Waking Luna 

Sue at Rebuilding Wellness 

KD at Making Noises 

Robin at The Truth About JRA 

Leslie at Getting Closer To Myself 

Gerri at 50 is the new 40 
Lenka at Lenkaland 

Megan at Stick and Stones 

Love,

Maya

Good for the Joints, Good for the Soul

Hello my lovely readers,

Montauk Lighthouse

I just got back from a relaxing weekend with John and our friends, Dave (John's high school buddy) and his awesome girlfriend Becky (who has quickly become a close friend of mine). My parents have a little beach house in East Hampton, Long Island and we always spent part of our summers there and in Montauk - my favorite spot of all. When I think of Montauk, I'm flooded with memories of my childhood, days spent on the beach, warm sunshine, fresh seafood, miniature golf, the peaceful sound of the Atlantic ocean, and my whole family happy and together...including my grandpa, who passed away last year. It's undoubtedly "my happy place" and it meant everything to share it with John who seemed to enjoy it just as much. 

I'd love to know - what's your happy place?

I also wanted to share some tips I got from the always amazing Palmer. She sent along some information from Fitness Magazine on arthritis, staying ahead of the disease process, and a list of the most effective foods to combat inflammation. Prior to that, I got the same list from my brother (I'm lucky to have so many people in my corner)...

Anti-Inflammatory Foods

Fish, Canola Oil, Walnuts. 

"These foods are high in omega-3, another type of polyunsaturated fat, which, unlike omega-6, can help counteract inflammation. In fact, in a 2004 study in the Journal of the American Medical Association, people placed on a Mediterranean diet that included foods high in omega-3 had less inflammation, lost more weight, metabolized insulin better, and had healthier blood vessels than people who ate just as healthfully but weren't on this diet. Most Americans don't get nearly enough omega-3 in their diets. Aim for more than two grams of omega-3 a day, from both plant and fish sources. A three-ounce serving of salmon has 1.2 grams and one ounce of walnuts contains 2.6 grams."

Olive Oil, Peanut Oil, Nuts, Avocados. 

"These foods are rich in monounsaturated fat. Monos on the whole appear to be anti-inflammatory and are already associated with improving the body's cholesterol balance. But olive oil may have some unique anti-inflammatory powers as well, according to research at the Monell Chemical Senses Center in Philadelphia. Taste experts there noticed that extra-virgin olive oil produces a "bite" in the throat similar to that of ibuprofen, a nonsteroidal anti-inflammatory drug. In tests, they discovered a compound in olive oil called oleocanthal that may fight inflammation in a way similar to that of NSAIDs."

Fruits, Vegetables, Whole Grains. 

"These foods provide a different inflammation defense: antioxidants, which may affect inflammation in the same way that closing the damper affects a fire. Antioxidants include vitamins A, C, and E, as well as phytonutrients like carotenoids (found in orange and yellow vegetables such as carrots and sweet potatoes) and flavonoids (found in red and purple fruits such as apples, berries, and grapes). Look for produce with deeper or brighter colors, which tend to contain the most antioxidants. According to government recommendations, you should eat two cups of fruit and two and a half cups of vegetables every day, choosing from a variety of colors throughout the week."

(Note: According to my dear Kate, who I wrote about here , pineapple is the best fruit for fighting inflammation! Pineapple Power! She swears by it)

Herbs, Spices, Teas. 

"Cinnamon, curry, dill, oregano, ginger, and rosemary are all concentrated sources of antioxidants that can fight inflammation. Most teas are also chock-full of them, including the green, black, white, and oolong varieties."

With family and friends who are always trying to make my life better and easier, I can't go wrong. I was reminded of that last weekend when I was stuck in bed. Along with uplifting calls from the amazing Vicki Hayne (another one of the best friends out there) and visits from John and Becky, I also got a surprise care package from Palmer (contents: a stuffed frog, an arthritis-friendly bottle opener, peanut M &M's - a favorite, a Colby thermos and dish towel, and the best letter ever). Mix in the best readers a blogger could ask for and I could never feel alone.

Love,

Maya

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