In a Season of Love, Let's Love Completely

Happy First Day of Fall! In my eyes, it doesn't get much better than this time of the year: the warm sunlight of summer still hanging on and the crisp, refreshing air coming in. I love the changing leaves and the hot apple cider vendors popping up in my neighborhood. Near my parents' home is the Jericho Cider Mill - a highly anticipated, seasonal farm stand with the unrivaled slogan: "Live HappLey AppLey." I smile seeing the pumpkins and decorations and the kids excitedly skipping to their first weeks of school. I'm also partial to fall fashions, the lack of humidity, and of course the start of school. It's comforting to settle into a routine and try my hand at new classes. Perhaps most of all, though, I love the coziness that autumn entails. It means the start of a season filled with family time, holidays, delicious food, and friends. This year, it also means the arrival of Kate! So...what's your preferred season and why?

On the subject of friends and family, I thought I'd share a New York Times article that Betsy passed along yesterday. It's called "Coping with Crises Close to Someone Else's Heart " and I think it's a good reminder to all of us - healthy or chronically ill -to offer our help in times of need and to really follow through. Of course, everyone responds to pain and trauma differently and sometimes, in the midst of great hardship, we might see things in our friends or family that may surprise us. It may even hurt us. Professor of pediatrics Dr. Barbara M. Soukes reminds us, "when you're confronted by someone else's horror, there's a sense that it's close to home...it'll change from person to person...the only certainty is that traumatic events change relationships outside the family as well as in it." How we respond in times of need can make our relationships infinitely stronger going forward, but if the ball is dropped on one end it can often be hard to overcome.

Professor of psychology Dr. Jackson Rainer reminds us that many people offer what he refers to as "pseudo-care, asking vaguely if there’s anything they can do but never following up." Just as we expect a certain level of respect, empathy, and a sense that the people who love us "have our back", we all need to take stock of how we offer it in return. Dr. Rainer suggests taking concrete measures to help a friend in need. He says, "There are any number of tasks to be done, and they’re as personal as your thumbprint...If you really want to help a family in crisis, offer to do something specific: drive the carpool, weed the garden, bring a meal, do the laundry, go for a walk."

The article hit home with me for many reasons and probably mainly because of my lifelong struggle with friendships (explained most in depth in this May post ). So often I thought I'd found a friend to invest everything in and, when my disease was at its worst,  many just headed for the hills. This article reminds me that this tendency can be in human nature - it is fear of the unknown, fear of doing or saying the wrong thing, and fear of being overwhelmed by another's struggle. It hurts less when we come to understand what's really going on inside the other person. Today, with a life filled to the brim with love and support and friendships I've prayed for, the small disappointments seem much easier to ignore.  But let's remember there are many ways to really "be there" for the people we love and, as long as we're there, there's no wrong way to love.

Enjoy your families and friends and don't be scared to show them how much you care.

Love,

Maya

Simple Joys & "Must Haves" of a Sick Chick

First of all, thank you to Jodi McKee for coining the term "Sick Chick" and letting me in on it. The "Sick Chick Club" is a small group of strong, awesome, and chronically ill women living in the tri state area and, although I haven't been able to make it to a gathering yet, I'm happy just knowing they're out there.  The list below was born out of a summer that didn't exactly "go to plan." If you've been following along, you know my pain was at its worst these past few months and I'm still in the midst of taming it. The way I see it, though, it hasn't all been for nothing.

In the past, slowing down has made me feel inadequate - like I should be doing something more. But something big happened this summer. Hurting the way I have has forced me to slow down. Ironically, although my body has been physically in distress, I've also never been more comfortable in my own skin. Having actually seen just what this disease is capable of...having been unable to drive or travel and getting strict orders to relax... I've just come to a new place of acceptance. An "if you can't beat em' join em'" kind of thing.

This is me and the way I feel today is just the way I feel. Instead of focusing on what I can't do, I'm learning to feel proud of whatever I can get done. Some days that's meant a trip through Tuscany, while others it's simply meant washing the dishes. Once again, though, I've got to give credit to the family, the friends and the boyfriend who love me unconditionally. They're a huge part of the acceptance and the peace I feel amidst this turmoil.

Believe it or not, being a "Sick Chick" has its perks. Now sit back, and hopefully have some laughs over my "must haves" when all else goes to hell...

                                                      Heat

It comes in many forms. Be it a hot shower, a nap in the sun, or my most beloved (and sexiest) accessory - the portable heating pad - there's no denying that heat helps! It can ease the aches and pains or just provide enough comfort on "tossy-turny" nights. If you haven't tried Thermacare heatwraps, you must. Just stick em' anywhere on your bod as you're heading out the door and let the comfort begin. Hint: There are almost always generic, local pharmacy brands that are cheaper.

Fur Between My Toes

Is there anything more therapeutic then running your toes through a dog's fur? Maybe it's just the animal fanatic in me, but few things soothe me like being close to my pups.

A Comfy Bed

If you live with pain, you know that a poor night's sleep can be like kryptonite. It tends to become a vicious cycle - the more pain you're in, the less you sleep. And the less you sleep? The more pain you're in. There are places to cut corners financially, but in my opinion a good mattress is not one of them. If you want the name of my mattress, don't hesitate to e-mail me - I'm a very happy customer.

"Magic Fingers"

Identify the person or people in your life who gives the best massages and treat them veeeery well. For me, those people are John and my mom. Thanks guys - I've got your back too.

 Childish Humor (That Often Embarrasses The People I'm With)

If you've spent any amount of time with me (and especially at the dinner table), you know I often revert back to age 5. I like to think this is part of my charm? To the left, behold the face I created with my Thanksgiving leftovers last year that, as I recall, elicited hearty laughs from my family members. The day that I forget how to be a "silly-heart" (thank you, Uncle Buck) is the day you can put a fork in me cuz I'll be done...

Trashy Television

I'll  be the first to admit it that reality TV is my vice. I welcome mindlessness to some extent... Jersey Shore, Project Runway, Real Housewives from any city (preferably New York), Project Runway, and my new favorite - Cupcake Wars! The drama, the shock-value, the panel of overly critical judges - I love it all. Honestly, sometimes obsessing about the lives of strangers is just what I need to get my mind off my own problems ;)

 

Some Good, Mood-Appropriate Tunes

My brother once said that my music was "predictably depressing." Being a proud college student at the time, I defended my taste tooth and nail. But he had a point. Yes, the bands and the sounds I'm drawn to tend to be more melancholy and sometimes that's just what I need. Other times, I take his comment to heart and put on something bright. If I'm not going to try lifting my mood, then I can't expect anyone else to. Right?

Creativity, In All Its Dorky Forms

Creating art has always been my favorite past time. My parents said that, as a little girl, I was happiest with colored pencils and paper in my hand. Today, I'm almost always in the middle of some little project - be it making little clay sculptures, sewing tiny stuffed animals, or cupcake decorating with my best buds (notice my Yogi Bear to the right). What's your creative outlet?

                                                  

                                                  Girly Vanities

Amazing what ten painted toes or coconut-scented lotion can do for a girl's mentality. When it hurts all over and nausea and headaches have become permanent accessories, I'd say its more than okay to pamper yourself whenever possible. If you're going to be a Sick Chick, be a fabulous one.

Online Shoppin'

I don't think you need to live with chronic illness to understand that occasionally the last thing I want to do is interact with other humans. I know, I know. "Movement is crucial for arthritis patients...", but let's be honest - I really like when things come to me. So thank you Amazon.com, Ebay.com and Etsy.com (my favorite) for enabling my occasional, yet necessary reclusiveness.

Mac n' Cheese (Gluten Free), Mashed Potatoes, and Other Such Comfort Foods

This one's pretty universal, right? Especially when you're dealing with chronic illness and the unpredictable side effects of medications (nausea is a big one), it's nice to have your own little, tasty army of "Go To" foods. Speaking of mac n' cheese, how cute are these stamps? 

Coincidentally, I just received a letter full of autumn comfort foods from the ever-thoughtful Betsy! I thought I'd share the ones that intrigue me the most:

The Yummiest Macaroni & Cheese

4 cups cooked elbow macaroni (about 2 cups uncooked)

2 cups (8 ounces) shredded sharp cheddar cheese
1 cup 1% low-fat cottage cheese
3/4 cup fat-free sour cream - I substitute low-fat french onion dip
1/2 cup milk
2 tbsp grated fresh onion
1 1/2 tsp reduced-calorie stick margarine, melted
1/2 tsp salt
1/4 tsp black pepper
1 large egg, slightly beaten
1/4 C dry breadcrumbs

1.  Preheat oven to 350
2. Combine 1st 10 ingredients, and spoon into a 2-quart casserole coated with cooking spray.  Sprinkle breadcrumbs over casserole.  Cover and bake at 350 for 30 minutes. Uncover and bake an additional 5 minutes or until set.

ComfoTThe Best Blueberry Banana Bread 

1 c frozen blueberries

1/2 c sugar

1/2 t salt

2 eggs

3 bananas-mashed

1 1/2 c whole-wheat flour

2 t baking powder

1/2 c oatmeal

2 T canola oil

Spray 5x9 pan w/ nonstick spray and dust w flour. Preheat oven to 350. Sprinkle berries w/ 2T flour. Combine remaining flour, sugar, powder, salt, and oatmeal. Blend eggs, oil and bananas. 
Add mixture to dry and stir. Add berries & place in pan. Bake for 60 minutes

Sick or not, what are your simple joys and "must-haves?"

Love,
Maya

This Body Had Different Plans

Pretty hot, huh?

This is a photo my doctor asked me to take for her yesterday (after Benadryl, so multiply it by 10). I'm sad to say that I'm having a delayed and severe allergic reaction Remicade, one of the rare albeit possible risks. The quality of the rash is bizarre; it's so strange that my rheumatologist said "she's never seen it before". That's always comforting to hear, right? It most closely resembles whip marks - raised, red and long welts all over my back, sides, stomach, scalp, ears, you name it.

Here's a little fun fact about Remicade: "[Remicade] is an artificial antibody. It was originally developed in mice, as a mouse antibody. Because humans have immune reactions to mouse proteins, it was later developed into a human (humanized) antibody."

According to my rheumatologist, some bodies just can't handle that mouse stuff. Ironically, my dad's nickname for me is "Maya Mouse." If you are on Remicade or are considering starting it, my intention is not to scare you off. Of course, every body is different, but it didn't feel right to hide this medical event in my life.

I've never had an allergic reaction, so it was pretty scary and further amplified by being alone in my apartment. Somewhere throughout the night - in a Benadryl-induced stupor - I had a little chat with myself. It went a little something like this: God Damnit! You stupid body. I get it. I get the damn point... you don't want this, so what do you want? Can't you see I'm scared?! Please just relax. We'll look for other options. 

In the morning light, I more fully understand the implications. I e-mailed my doctor at 1:00am and she wrote back within 5 minutes (how's that for a winning doc?). At the moment, we're in agreement that it would be foolish to proceed with Remicade. I so wish I could have given it a real shot. Looking for other options means strength and faith and patience and these are qualities I need to actively fight for. I guess no one said this would be an easy ride, but I could really use a break.

Any prayers, healthy thoughts,  healing wishes or good vibes would be more than welcomed! Thanks for reading and being behind me through this ever-changing journey.

Love,

Maya

Teachers Among Us; Teachers Within Us

ho is the last person you'd expect to change you; to transform your thinking? What do they sound like?

What do they look like?

For me, it was "a research professor." Dr. Ada Mui , however, is nothing like the dry, monotone figure I anticipated. Professor Mui teaches "Social Work Research" at Columbia and is a friendly, middle-aged, Chinese woman. At the start of our first class last Tuesday, she greeted us enthusiastically, joking about the bad rap research often gets. Professor Mui not only teaches, but is also a hard-hitter in the research field -  recognized as "one of the leading social gerontologists in cross-cultural research." She specializes in the field of gerontology and has published several articles on productive aging, age-friendly community, self-care, family care giving, medical care, immigration, psychological well-being, and much more. She is also a Fellow of the Gerontological Society of America and has received several, prestigious awards and scholarships for her work. Click here to visit her website. Quite simply, Professor Mui is incredible and I knew that after one class.  She's passionate about her work and, by the end of that first class, I actually felt excited about the prospect of designing a research project. Now that's impressive!

Professor Mui will also be facing blindness in the next few years, as she lives with a degenerative eye disease. Immediately, I found myself thinking "hey, if this lady can come to a new country, learn English well enough to become this accomplished, stand in front of us, teach an intensive course, work a crowd like it's nobody's business, and kick some serious ass....sky's the limit." Somewhere in that first class, she briefly referred to her disability as "my challenge." I've been sitting with that ever since.

Because don't we all have "our challenge?" Mine's called Spondylitis and this summer I truly saw what I'm up against. Yes, it rocked my world. Yes, I grieved and yes, I feel scared about my future whenever I let my mind go there. I saw that this disease is very real. It's vicious at times, it doesn't ask permission, but it is my challenge. Since Tuesday, though, I've been actively trying to view my challenge as matter of factly as Professor Mui views hers. After all, Spondylitis cannot own me if I own it first.

Everyone in this world has a challenge - everyone - and, if they say they don't? I'd suggest steering clear (or reporting it to the government because you may have found signs of aliens). In my eyes and through the pens of the greatest writers, struggle has always been synonymous with humanity:

"If there is no struggle, there is no progress." - Fredrick Douglass

"Once you fully apprehend the vacuity of a life without struggle, you are equipped with the basic means of salvation."  - Tennessee Williams

"Human progress is neither automatic nor inevitable... Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals." - Martin Luther King, Jr.

"A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us." - John Steinbeck

"There's always got to be a struggle. What else is there? That's what life is made of. I don't know anything else. If there is, tell me about it."  - Van Morrison

 Okay, you get the point.  You must get through the storm to appreciate the rainbow...what doesn't kill us makes us stronger...it's been said a million times and in a million ways, but in my opinion, it's never been said quite as simply (and perhaps as unintentionally) as Professor Mui put it that day. There are all kinds of challenges - in all shapes, sizes, durations and depths. Struggle doesn't care about your agenda. It doesn't care if you're Jewish or Muslim, black or white, rich or homeless. It will find you. We can cry about it (crying is okay). We can get angry as hell. We can hide, but when all of that's over we have a choice. If we wish to truly make something of these lives, I believe we must eventually seek the purpose. Purpose is everything.

So what is your challenge? What does it feel like? Has it forced you to change your plans? How? What have you learned from it? Who has helped you through it?  

Whatever it looks like, own it. Tell about it to anyone who cares to listen. If you construct your challenge as purposeful, then couldn't we all be here for each other? Instead of dwelling on the unfairness of our lots, pitying the poor, looking down on our neighbors...could we learn from each other's personal struggles as if they were gifts set among us? Maybe those living with the greatest hardship - the pain that's simply unimaginable to most of us - maybe they're actually out greatest teachers. Whether they're premier scholars teaching at Columbia or limping nameless through the subway, they're all teachers. I believe it's a workable scheme intended to keep us all moving forward and, most of all, I believe we're all in it together.

Love,

Maya

Remicade Update & Thanks :)

Many people have been asking how my first Remicade infusion went yesterday and that means a lot. It went as well as a 4 hour IV infusion in New Jersey could have gone! ;) 

It being September 11th yesterday, we drove under this flag
on the George Washington Bridge (it was much bigger
and more striking than it looks). It gave me courage.

Aside from the 2 hour trek to Jersey - some silly insurance hoop - I had the company of my mama as usual (thanks again, mom!), the center was comfortable, and the nurse couldn't have been nicer. He got the IV in on one stick (a rare event for me) and, in stead of feeling anxious, I mostly just felt hopeful. As my friend Cathy updates us on her success with Enbrel , I've found myself growing increasingly hopeful about the quality of life Remicade might afford me. This may be over the top and cheesy, but it felt like there were possibilities dripping into my arm instead of just medication. As I watched the bag emptying above my head, I imagined the city blocks I might be able travel, the floors I'll sit on without becoming stiff, the ball games I'd play with my dogs, the long walks  through Central Park, the energy I'll have for family, friends and of course for John. I sensed potential yesterday and, while I'm trying not to build my hopes too high, I've got to believe in my doctor. I've got to believe in my body.

Maybe it's just the dork in me,
but this made me laugh

I also met a great girl named Julie who was sitting across from me receiving the same medication. She's 19, a sophomore at Penn State, an avid volunteer, and living with Crohns Disease (an inflammatory bowel disease). I really enjoyed getting to know her story. We swapped e-mails and I'm hoping she'll be appearing on this blog as a spotlight soon. Ordinarily, my infusion should only take about two and a half hours, but I did have a slight allergic reaction to the first dose (a few hives and a numb, tingly mouth), so I got some allergy medication and an extra dose of steroids. I'm told this can happen the first time, and I'm feeling good today - those steroids are incredible, albeit not something I can stay on. I'm also told the Remicade could take up to three months to do it's thing, so this will be an exercise in patience and in faith.

Thanks for reading and for caring about my story. You all give me great strength.

Love,
Maya

Power Soccer, Team USA!

"Power soccer is a real sport....power soccer is changing lives...

We need your help to get the word out there so that more people can experience the opportunity to play a sport; experience the opportunity to dream...our goal is to make history."

-Chris Finn, Head Coach of Team USA 

Take a look at this amazing trend enabling people with disabilities to kick some serious butt! In 2007, Team USA won the first ever world cup in Japan and virtually no one knows about it. Let's get the word out and take one step toward a world that's easier and more fulfilling for everyone.
(Note: If you wish to view the video on a full screen, double click the video box and it will pop out)

Spotlight on the Amazing Kate Brabon!

Looking back over our countless letters, I was surprised to see that Kate and I only first spoke in May. It was then that she came across this blog and took the first step of messaging me. Every day I feel thankful for that message. It might sound cliche, but in these past several months I've genuinely come to view Kate as my sister; as someone I've known forever. Not only that, but we'll be spending two weeks together this November when she comes to visit me in New York!!! It's all I can think about lately.

The amazing Brabons

I've written a bit about Kate, but it seems my words don't do her justice.  Undoubtedly, part of why she's so special is the family she grew up in. Kate lives just outside of Melbourne, Australia with her two wonderful parents Martin and Nina, her younger sister Meredith, and her parakeet Teddy ;) Her older sister, Emily, lives in England and is married to Murray. Without having met the Brabon bunch (aside from on our video cameras), I've already been made to feel very supported and just like another member of the family. 

Gorgeous Sisters!

Kate is currently 23 years old and studying law and history in her final year at La Trobe University. In addition to being a full-time student, a daughter, a sister, a friend, a world traveller, and my own personal hero, she's also a Spondylitis patient. Although she has lived with pain for a while, she was only officially diagnosed this past spring. Kate has already blown me away with her acceptance and determination in this fight. While I've tried few options other than intense modern medicine, Kate has tried to combat her pain alternatively with the help of a nutritionist, an acupuncturist, a massage therapist, etc. I admire her tremendously for that and, in a way, we've rounded each other out. While she's inspired me to find healthier solutions to this pain, I've shown a little tough love and made her take this disease more seriously. We're up against a lot, but together it somehow seems smaller. When either of us find something that helps, we rush to tell the other. For this reason and many others , I'd say we're one great team.

Kate has a wanderlust that's contagious and a passion for living that's simply made me better. Just this past summer, she travelled to Russia - a country she's studied in depth and always dreamed of visiting (kicked off by a special professor named Adrian Jones). With my own pain being at its worst over the past few years, I've let this part of me slip. Travel became something daunting and technical (how will I get my medicine overseas? Isn't it easier just to stay put? etc). But Kate reminds me of all the beauty there is in this world. She's helped me take life by the horns and cherish each day...especially each day without pain.  For this and for so many reasons, I am infinitely grateful to her.

I could go on for pages, but I think I'll just let her words say the rest. Quite simply, anyone who knows Kate is better for it, so enjoy!

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

I was officially diagnosed with Ankylosing Spondylitis at age 23, in May 2010, but I had a rather drawn-out diagnosis. Last year I tested positive for the HLA-B27 gene and had sclerosis in my lower spine show up on an MRI scan. However, my rheumatologist at the time was reluctant to diagnose AS without being able to assess my MRI results over a longer period of time. This was really difficult—having this ‘maybe’ hanging over me—with no definitive diagnosis. I didn’t see my rheumatologist for months, and unfortunately heard nothing from the clinic. It wasn’t until I touched base with the SAA and met the amazing Maya, that I was motivated to contact the rheumatologist again, and received a definite diagnosis. 

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

Feel. Whatever emotions are hurtling around, be it anger, sadness, self-pity—let yourself feel them, for now. But realize that a diagnosis is a positive thing. It’s an answer in a situation where there are so many unanswered questions. It is also a guide down a path towards treatment. Don’t take a diagnosis as a burden you carry, but rather a tool now in your possession that opens up the beginning of treatment and acceptance. And finally, the sooner you accept—the sooner you are on the road to getting the best help possible. Know that there is an incredible lightness once you leave denial behind. 

Please explain a bit how your condition affects you. (for example: What are the symptoms and what is the hardest to cope with? Has the disease changed with time? etc. )

Physically, my lower back, neck and shoulders hurt every day, and my knee has been swollen and inflamed for 3 years now, despite surgery and steroid injections. Mornings are hard—I often need extra time for heat packs or to lie back down. It’s very unpredictable though: one day feeling as though nothing is wrong, the next morning holding onto walls to help myself walk. It is troubling to notice different joints hurting as the diseases progresses: in only the past 6 months, my jaw, hips and wrists are now all affected. There’s also the general fatigue that comes with an auto-immune disease: it’s hard to convey that heaviness; it is so much more than just being tired. 

But it also deals quite a strike emotionally:

There is the fear of the ‘unknown’ when it comes to having a progressive illness, and one which affects people in such varied ways. There is just no way of knowing how or to what degree the disease will affect you, and it is hard not to look merely at worst case scenarios.

And the frustration—at the disease—which can be so closely tied to frustration with yourself: feeling sick of being in a body that throws some kind of pain your way on a daily basis. (But then I should be feeling fortunate—there are others in such worse positions than I. And on goes the rollercoaster of feelings!)

And the future: What comes next? How much worse will it get? Will I be able to accomplish the things I want to do, or should I change my goals to make them more ‘Spondylitis-friendly’—or is that succumbing to weakness? So many questions, and always absent a definite answer. Yet at the same time, I think those question marks make you determined to chase and hold what you can now—cherish those ‘good days’ (when you feel ‘normal’!) and jump (perhaps not literally:)) at all there is to see, feel and do. 

Where do you get your strength?

Love from family and friends, dreams/goals, music & words. 

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

Assume nothing: explain even the most seemingly basic things, and slowly please. Realize, and remember, that there is more than a patient’s physical well being in pain or under threat: emotions need the same (or more) attention as swollen joints. And when you say “any questions?”, please show some evidence that you really do want to/have time to hear what they are.  

What are you most proud of?

I’m still chasing the same goals (studying law, history, language, traveling the world)—probably even more so because of the challenges AS has thrown into the equation. I’ve still got my stubborn streak. Learning to live in the moment. I love John Lennon’s quote: “Life is what happens to you while you’re busy making other plans.” With that overshadowing possibility that any given day could be struck down or lost to pain, you can’t say ‘maybe tomorrow’. Rather than thinking back or forward, I really know now what it feels like to register how good you are feeling at a particular time, at the time, and just grin at the beauty of it. 

Thanks so much, my beautiful friend.

Love,

Maya