Celebrating The Body

The whole group us, Italy June 2010

Hello again! I'm home now from gorgeous Italy and the transition isn't exactly an easy one. Going from the ease and indulgence of an Italian dream to the humidity and responsibility of a New York reality...at the moment, feels pretty rough. The trip was amazing, though (to say the least) and every moment I felt so lucky just to be included. 

Cyprus trees, a lovely element of Tuscany

When John and I arrived in Florence and met up with all 8 of his awesome family members, it really hit us. His board exam was behind us, we were together, and we had finally arrived. Italy, John, my "other family", the best food and drink in the world...need I say more? 

After our first night, we all ventured into the Tuscan countryside. Our destination was Montespertoli, a small town about an hour outside of Florence. There we found our lovely Tuscan farmhouse that we'd call home for the next week. 

Throughout the trip, we travelled to and from gorgeous walled-in medieval villages,  taking in views and sights I've only seen in movies. It was just as I had imagined it, actually: golden hills, farmland, vineyards, olive trees, lighting that could inspire anyone to paint.  The whole group of us spent a day at Certaldo , a city high above Tuscany and the next day at San Gimignano . 

Siena's amazing Duomo, storm rolling in

The streets of Certaldo

John and I spent the next couple of days traveling with his grandpa Hank who is undoubtedly the most active and adventurous 80 year-old I'll ever know.  We visited Siena , the city we'd later agree was one of our favorite spots. We were awed by Siena's Duomo and it's unbelievable opulence: the artwork, the mosaics, the busts of every past pope lining the ceiling, the bright frescoes so well-preserved that they could have been painted yesterday. We even climbed the spire of the museum, giving us an unbelievable view of the city and surrounding landscape. This should give you a little hint of how my Spondylitis left me alone over there.

We went back into Florence, too, and experienced it all in a whirlwind. We said hello to David in the morning, crossed the Ponte Vecchio  and the bridge my brother proposed on in the afternoon, and fit everything  we could into the middle. I got closer to John than I've ever been during this trip and, while we've always known we each enjoy traveling, we've never had the chance to really share it. We discovered a mutual passion that I know will only strengthen our relationship in the years to come.

In a country known for its fresh food and wine, its beautiful people, and its extraordinary spirit of indulgence, it's hard to deny yourself the pleasures around you. I admire this beautiful culture and this passion for living. Something happens to you in Italy. There's a reason that some of the greatest masterpieces have come from here; why writers and artists are able to release themselves entirely amidst the backdrop of beauty and history. You start enjoying your body in a whole new way, allowing yourself to let pleasure wash over you. As someone who spends most of her year in pain, this means everything. Italy breathed life into me, reminding me of all the good my body is capable of. Instead of being at odds with my body, I was able to celebrate it. 

 Much to my surprise, my pain really gave me a vacation; it felt almost as if I had borrowed someone else's body for the week. Suddenly I was this person again ready for any adventure, able to climb steep, cobbled hills with the best of em'!  It was an amazing feeling and, while I knew it might not last, I felt so grateful for the relief.

To what do I attribute this change? I think it's simple, really. Love, happiness, great food, a renewed passion for travel...and sheer will. I also took two Humira shots the day before I left, so this probably had something to do with it, but not least of all, it was also Italy's warm, sunny and dry weather. The transition back into the intense New York humidity has been a brutal one (one that's left me in bed) and I'm just hoping I can reach that place again where pain is an after-thought. Whatever it is and will be, I'm so happy to have felt that good in Italy and to have the memories we made.

And now some more photos....

Hanging grapes at a wine tasting

An amazing Tuscan sunset

I love this guy

John & Sara taking a dip

Love,

Maya

One Smart Cookie

"The best times of your life are yet to come" - My fortune cookie from last week

I'll take it! Typically my fortunes are vague, confusing or downright ominous. But I liked this one a lot and it happened to come on the first day in a while when I was in less pain.  Not to get too intense about this, but I'd like to think my dessert was reminding me that Spondylitis is cyclical. Sure, we all know what goes up must come down, but I can't forget that with my health it's always worked the other way too (eventually). And you know what,  cookie? Thanks. I really do have a lot to look forward to.

Off to Italy with John and his awesome family for a Trip of a Lifetime ! Be back here on June 27th and, in the meantime, everyone be healthy, safe, and don't forget to love...

Love,

Maya

A Special Bond

This weekend I succeeded in getting my parents to take some time for themselves and go out to their beach house. Since I was house-sitting, my friend Jackie came over to visit and, as we were chatting, my dog Lily (who I first wrote about in "A Fuller Picture") came zig-zagging toward us. She looked up at me with two bright, red eyes and suddenly her paws gave out from under her. She collapsed and, for the next 10 minutes, Lily just wasn't...there. Her limbs went limp and she was unresponsive to anything. Trying to keep my cool (and failing), Jackie and I rushed her right over to the vet. Sure enough, he confirmed that Lily suffered either a severe seizure or a stroke.

My poor, sweet pup. I stroked her during the exam and I think she knew I was taking care of her. We stuck by each other throughout the night and, while I can't say I slept more than two hours because I was obsessively checking on her, today she is back to being Lily and I'm recovering too. Thank you again, Jackie, for all your help yesterday. You were fantastic.

I want to share part of an e-mail I got from someone who is quickly becoming one of the most important people in my life. Her name is Kate Brabon and she lives in Melbourne, Australia. We met when she found my blog. Kate is also living with Spondylitis at the same age. While I plan to do a whole post on the amazing Kate, for now let me share this bit from her letter this morning:

"... It’s just so lucky that you were there when it happened so could get her straight to the vet...I remember reading that you said she’s so in-tune with how you are feeling and just knows when you need comforting. It sounds like there is such a special bond there and I’m sure she feels so comforted having you by her side when she’s not well..."

Kate's totally right and, as usual, she knew the most comforting thing to say at the time. I believe there's a reason Lily is my dog. We're there for each other and when I'm in pain, she is too. I think anyone in chronic pain should have an animal by their side. More than I ever thought possible, Lily knows when I'm sad or  hurting and I can see in her eyes that she wants to make things better. It's a special bond we have and yesterday it felt like I was just re-paying a friend. Here's hoping that episode was a one time thing...






Love,
Maya

Side Effects of Side Effects

We all know the ads on television. You know, the ones for various drugs that end in a horrific, rapid slew of side effects....

"May cause rash, dizziness, shortness of breath, nausea, headache, vomiting, hail, locusts, a third eye, premature death..."

Okay,  maybe I'm being a bit dramatic. But in a time when doctors are writing prescriptions like it's goin' out of style, we need to remember that side effects are real and can sometimes be harder to cope with than the original condition. Even when taking the most generic, over-the-counter pills, it's important to keep our eyes open to the risks. Unfortunately,  I was reminded of this lately in a pretty harsh way.

Although my overall joint pain has declined lately which I'm very thankful for, I've had a bad headache or migraine every day for about two months. I've been told it's connected to the spinal, shoulder and neck pain inherent with Spondylitis. Without really thinking and in that just-make-it-stop kind of way, I popped a couple of Excedrin migraine capsules every morning along with my usual mixture of pills.  All I really thought about in those moments was that they would let me go on with my day. 

I may have lost track of what I was taking, but my body sure didn't. I've been having bad stomach aches lately, a consistent gnawing, burning pain and...without going into too much detail... noticeable gastric distress (sorry John, mom and dad).  I went to see Dr. Tack  , the gastroenterologist whom I mentioned previously under my Winning Doctors . Sure enough, he found strong evidence of GI bleeding (probably in the stomach) - something that's happened once in the past to a lesser extent.  Excedrin = Fail.

Living with a disease like Spondylitis is extremely hard (as Dr. Tack empathetically reminded me) and I'm beginning to really learn that it's a perpetual balancing act. If I try to fix my joint pain or headaches too often with medicine, another issue will undoubtedly emerge.  It's a hard truth to swallow, but this only furthers my drive to search for alternative therapies and respect my body's wishes.

The good news? My blood count was not alarmingly low. This means 2 things:

a) I will live and b) I probably caught the bleeding early enough to avoid any corrective medical procedures (thank God. Wasn't to keen on the endoscopy idea). I was given a strict regiment to adhere to in order to heal my tummy, although even these corrective pills have side effects . Oh, and I took the liberty of berating myself for overdoing the NSAIDs.  I hear you, body, and if that was my wake up call it came in loud and clear...

Now let's hope for a speedy recovery so I can enjoy way too much food in Italy (T-6 days!)

Love,

Maya

Trip Of a Lifetime

It dawned on me that I haven't mentioned the most exciting part of my summer! A few months ago, John's family invited me to Italy with them and...there wasn't much arm-twisting there ;) Maybe I haven't written about it because it hasn't quite seemed real until now, but as the departure date approaches I'm getting  more and more excited. There will be 10 of us on the trip: John, me, John's parents (Margaret and Bob), John's sisters (Sara and Laura), John's grandpa Hank, his aunt Linda, his uncle Gordon, and his cousin Veralee.

I was lucky enough to have visited Italy 3 years ago with the Colby College chorus, singing and eating our way through Rome, Florence and Como. It was just a dream. I feel so lucky to be included in this trip, to be able to return to this amazing country, and to be with John and a family that I adore. 

John and I are leaving on June 17th (the day after his med school board!) and will meet everyone in Tuscany. I'm excited for John to be able to unwind and celebrate after working as hard as he has. I'm excited to get to know his family on a whole new level. I'm excited for all the memories we'll make, the food we'll eat, the things we'll see. But what I'm most excited for is watching Sara and Laura experience international travel that's tailored to them.  We're traveling with a special company called "Accessible Italy" whose mission is to " promote respect, awareness and accessibility for travellers with disabilities...creating a barrier-free environment (architecturally and socially) throughout all segments of the travel and tourism industry in Italy." Europe is extremely difficult (even impossible in some places) to navigate in a wheelchair, but this tour company will make it easy for them to enjoy Italy without worrying.


Here's hoping my pain takes a vacation elsewhere and lets me enjoy this trip to the fullest. I'm actually bringing along a wheelchair just in case the walking becomes too much for me to handle (something I wouldn't have allowed myself in the past) and I'm off to buy a working camera so I can share the memories with you all.  Do you have any trips planned for this summer?

Love,

Maya

Chronic Babe

So I'm a "chronic babe" - a title that makes me smile and feel proud at the same (which is precisely the point). It was coined on one of my favorite websites, Chronicbabe.com. Jenni, a wonderful "chronic babe" herself has been diagnosed with Fibromyalgia and Asthma among other conditions. Instead of dwelling on this reality, she has found a way to transform her thinking and and the thinking of anyone who visits her awesome site. She writes:

"One of my biggest frustrations has been the frequent disbelief I encounter when I explain my condition to people. "You're way too young to feel that way!" is a common refrain. "But you look fine," is another. My favorite has to be, "I'm so sorry. That is so sad." Raise your hand if you've heard this before. Maddening, isn't it? Yes, I am young. Yes, I look fine. And yes, it is sad. But as time passes, I choose more often to focus on the positive: I am creative, and I have choices. And even when I'm cramping and blubbering and whining, I'm still a hottie."

I admire Jenni's strength, humor, and positive outlook in the face of illness. I can definitely say that she makes all of us babes better by just being there. She also organizes a "Blog Carnival" - a "biweekly collection of some of the best women health & medicine bloggers around." Each carnival focuses on a specific topic relating to chronic illness and each post offers a new perspective, be it hilarious, moving or anything else under the moon. If you're interested in submitting a blog entry for consideration, write to jenni@chronicbabe.com. The carnival goes live every other Tuesday and the post should be sent by midnight on the Sunday before including your name, the title of your blog, the title of your post, and 1-2 sentences about its relevance.

The topic of the last blog carnival was "Favorite Tips, Tools and Tricks", so click here to see the awesome entries. I felt proud that my post, "The Most Natural Medicine", was included under the header "When all else fails, there's humor".

Oh, and along with maaaany other fantastic resources Jenni has on her site - anything from information for family and friends to fashion sites for chronic babes - I found these hilarious T-shirts about arthritis (along with many other conditions): Med-Tees. My personal favorite is the "Snap, Crackle and Pop" T-shirt. Thanks for all you do Jenni! :)

Love,

Maya