"A Special Place for Special Kids"

For 87 years, Sunshine Camp has run free sessions for children and adolescents living with disabilities. Each week plays host to a different group of kids sharing a similar illness and thus provides a crucial opportunity for normalcy and FUN in the year. I have had the privilege of being a counselor during the weeks hosted by the Muscular Dystrophy Association (MDA). While there are several forms of Muscular Dystrophy and some are more severe than others, children with the disease often miss out on a “typical childhood”. They are unable to enjoy the same activities as healthier kids and, in many cases, spend a great deal of time at scary or painful medical appointments. For these children, this week means not only summer camp—it means they can finally be kids. They need not think of themselves as "different" from anyone since everyone is there to cut loose. Additionally, the entire camp is wheelchair accessible! Each camper is linked up with one counselor who cares for their physical need and offers support and friendship. This ratio is fantastic and facilitates deep bonds that can truly last a forever.

I first volunteered to be a counselor in the summer of 2003 when I was 16. If you're reading closely, that's also the year I was first diagnosed with Spondylitis. Aside from really wanting to take part in MDA camp, I can't help but think it took me out of my own head for a while. It absolutely gave me new perspective. From the moment my first camper's information packet arrived in the mail, I was hooked.


I should also mention that MDA camp is where the Ferrarone family first came on the scene: Sara and Laura (the cuties on the left) who were campers at the time, their amazing parents Bob and Margaret, and of course their brother John who was my fellow counselor, friend for 7 years and now my boyfriend. Camp also brought the Bowers women into my life and I plan to share more about them soon. I'm forever grateful to Sunshine Camp for what it's done for me and for every child it touches; for introducing me to some of the best people out there and showing me direction in life.
Here are some photos from all the summers I spent at camp. I think they capture the spirit pretty well...

On the left is a picture from my first summer with Mary Bowers (my camper, friend and full-time hero). On the right is Laura Ferrarone, the younger of John's two beautiful sisters. Under the photo with Mary, is one with Sara ( John's other sister). She's a sweetheart and both Sara and Laura inspire me more than they know. I also included a photo from the night our campers were handed paint brushes and face paint and told to design our faces. At camp, the messier and goofier the counselors look correlates directly to how much fun the campers have. I, for one, have sat in kiddie pools of dog food, been made into a human sundae, you name it! It's the best.


I also included a photo of Mary and I playing around during free swim - a daily, favorite past time at camp. The pool is adapted so everyone has the opportunity to swim. Those with greater mobility issues can either sit in a pool chair while being rolled down a ramp into the water or use the special lift that lowers them gently in. I'm tellin you, nothing is off limits at camp.


































There are PLENTY more where that came from, but I'll leave those photos for another day. Interested in volunteering at MDA camp ? Search for your local MDA office and inquire about filling out an application. It's been life-changing for me. Thanks again for reading - until later!

Why Social Work?

I haven't mentioned yet that I'm getting my Masters at Columbia University School of Social Work. As one of my friends (Miss Virginia Brown) pointed out when she visited, "it's the little black dress of degrees; you can dress it up or dress it down." I loved it when she said it and I love it now - it's an adorable way of saying an MSW is really what you make it. There are those I've met on the "Policy" end of the spectrum that may have no desire to see a client in their lives. They're content in offices doing the behind-the-scenes work that leads to crucial public change. There are those like me that are very "Clinical" with a strong desire to wok one-on one with people. The majority of people find their interests somewhere between the two extremes. You can work anywhere from old age homes to the the United Nations, local hospitals to clinics in Ethiopia, prisons to schools (I'd guess some kids may not see the distinction between the last two). But you get my point. It's an incredibly maliable degree and I think that was it's main appeal for me. I can't see myself ever getting bored because I could be that woman who reinvents herself whenever I want, however I want, as many times as I want.

As you'll learn from talking to most MSW students, there's often a pretty distinct reason they're there. It's just one of those degrees that seems come with a story and I've had a great time listening to what those might be. Certainly, my own chronic illness gave me a profound empathy for people also living with pain or illness. Although my current first year internship consists of 21 hours a week at a Foster Care agency, my ultimate hope is to work with children, adolescents and families affected by chronic illness and/or disabilities. I'd love for my second placement to be in a Children's hospital or Special Needs school and have dreams of one day having an alternative-therapy based private practice (more on this later).

If you want to know when I realized this, just go back a bit to that curly haired girl I mentioned from my childhood. I'm really no different now. I remember always writing books or newspapers about my experience (come to think of it - kind of like this blog! ) and actually came across one of these little "publications" at my parents' house last summer. It's cute, but sad to see the words of an 8 year-old who was trying to be brave for other kids. I so calmly explained MRIs, bloodtests, and living with disease. I don't think I found a true outlet until I heard about Sunshine Campus near Rochester, NY whose tag line is "A Special Place for Special Kids." My first summer as a volunteer counselor (and the four after that) would start me securely on my path to Social Work. Thanks again for reading and check back for a detailed post about my life-altering years at camp.

True-Blue

So can you believe this gorgeous New York weather? Right now I'm enjoying a four day visit from one of the best friends out there - Palmer McAuliff (who is the less furry one in the photograph to the left. The pup is Bennett, her 10 month-old Golden Retriever puppy). Palmer's one of those people I promised to single out (and probably embarrass) in a later post, so I think now's a good time. We met at Colby Sophomore year, became close our Senior year and the rest is history. She still works for our college as the Assistant Director of Alumni Relations - kind of a rock star position to snag the summer after graduation. I could write pages listing her good qualities, but a few things make her particular stellar at her job: She's incredibly warm, genuine, intelligent, engaging, interested, kind-hearted and absolutely LOVES Colby. Alums are drawn to her instantly, she plans some amazing events throughout the world, and has made the department that much better for being there. If you couldn't tell, I'm a proud friend and also a big fan of this job because, although it's about 7 hours from here, it also enables her to travel to NYC pretty often to run events, meet with alums, etc. So I'm not complaining :) She's just amazing and I'm so lucky to have her in my life.

A good example of said amazingness? Today I woke up with a head full of big city plans for us that quickly took a backseat to a morning surprise: my horribly infected toe (who saw that coming?) Unfortunately, random and fast-spreading infections are something I'm very familiar with because of the medicines I've always taken - weekly injections that help the inflammation and pain, but lower my immune system tremendously. I plan to do a post about the various drugs I've tried and the successes or failures of each so stay tuned. Anyway, it seems every months or so I'm battling some new infection and things like ingrown toenails have landed me in the hospital on IV antibiotics for days. It's not easy, but friends like Palmer make the uncertainty and pain a million times easier. She's the kind of friend who makes me feel fine about needing to stay in; who says "YOU'RE why I'm here. We can just sit here and it would still be fun." She's the kind of friend who sneaks into the kitchen when I'm showering (otherwise she know I'd stop her) to do all my dishes because she doesn't want me standing up. I'm only just getting comfortable asking for real help from people, but with Palmer I don't even have to do the asking. When my other Colby girls, Vicki and Virginia, visited a couple of weeks ago it was the same way. They see it in my face; helping me is as natural to them as breathing. These are the types of friendships I've wanted my whole life.
I also just want to say a huge thanks to Jenny Dreizen (left) for surprising me and re-designing the top of my blog ! So thoughtful. I tell ya, this girl has an eye for all things lovely. It clearly runs in the blood since she and her sister Olivia (right)co-author Lovely At Your Side, a completely fantastic blog that highlights the "lovely" things in life. They have the winning combination of [four] eyes for beauty, a real appreciation for the simple pleasures in life and a wonderful way with words that just keeps you coming back for more. Check it out - I know I do at least once a day! Thanks for all the support, you lovely sisters. Also shout out to my dad for taking the beautiful photograph of the flower. And finally? Thank you all who have taken the time to read and even comment. I'm pretty floored by all the amazing support right out of the gate ! Until later...

A Fuller Picture

Sure, most of my posts will be about living with chronic illness, but if you're going to read about my living and loving, I'm positive a few things will come up (probably pretty often):

1) My family: As I said in my first post, they're everything
2) My friends: Add them to the aforementioned "everything"
3) John (and his family):  I'll try not to embarrass my boyfriend too much, but he's such a huge part of my life that I'm sure he'll make his way in here fairly often. I know his amazing family will too since they've made me feel like a part of it.
4) Animals: It typically takes at most 10 minutes of talking to me to see what an animal lover I am. I'm that strange girl on NYC streets content in engaging your dog in conversation...and not you (oops)
5) Vegetarianism and Animal Rights: I promise not to turn this into a blog about animal rights, but it will come up. I'm profoundly passionate about this issue, so hopefully you'll either find it interesting and useful or you wont mind too much. I know it's not for everyone, nor am I trying to push it on anyone.
6) Poetry and Writing:I was an English/Creative Writing major at Colby and had the greatest professors. Writing isn't just my favorite past time, it's almost spiritual at this point. It connects me to people through time and space. It just makes me feel alive.

7) Music: I grew up on music and it's just a part of me. I really listen to the lyrics. I've also been singing my whole life, took part in countless choruses (including All-New York State in high school. Sorry for the brag.) and am an alumni of the Colbyettes (Colby's first all-female a cappella group). I'm fully aware of how dorky a cappella is, but it was also a great time in my life and I really miss those girls (see photo). I'm always looking for new music and artists, so if you have suggestions please send away!

8) Travel: I've been lucky enough to travel a lot for a 24 year-old. I've loved everywhere I've been and have even gotten to live in Quito, Ecuador and Melbourne, Australia. Somewhere down the line I'll probably post about those experiences since travelling and living abroad with chronic illness is a whole new barrel of monkeys.

So enough talking for today. How about some sweet pictures of the pooches in my life?

This is our Bernese Mountain Dog, Riley (also known as "Bear", "Panda-Cow", "Boo Bear", Buddha Bear", "Puppy man", "Ry-Pie" and so on.) Interests include: bagels, napping, being a mush, bagels, rolling down hills, cuddling, snow, bagels.  He's the BEST therapy. If you have the time, space and means for an animal, there's really no better medicine.
Here's the other pooch I love:

Meet Lily, the German-Shepard mix we adopted from North Shore Animal League here on Long Island (also known as "Lady wolf", "Sheppy", Lilybelle", and so on...). She can be a real nut job and is definitely the "Alpha Dog" (Riley never had a prayer), but she is also very sweet. Never met a dog who's so in tune with my emotions - she always knows when I'm having a "bad day" in terms of my pain and tries her best to fix it.

The Spoon Theory

If you're living with chronic illness and also tuned into other people, you will probably face one common problem: disclosure. That is, how do you explain illness to friends who may never have been to a doctor? How do you tell teachers or professors that your illness might be affecting your work? Even co-workers...how much information is too much? How do you say it so people really understand? I think it's something I'll always struggle with to some degree, but when I saw this essay it was such a relief! Take a look:

THE SPOON THEORY, by Christine Miserandino

Brilliant! I, for one, would love to shake her hand :) While I don't have Lupus, it works almost universally. For me, one of the toughest things has been my inability to make set plans . I could say I'd meet a friend for dinner and by the end of the day, be in so much pain that I just need to lay down. This was particularly hard in college. Spondylitis is so unpredictable and the inflammation is set off by so many factors that even I lose track of: rain, snow, humidity, stress of any kind, exercise (it's a long list that makes me feel too fragile too often). But that's just how it is and I've found that, especially after my friends read the Spoon Theory, they really do understand.

Let's face it. No matter how understanding people are, sometimes it's just daunting to explain our illness time and again to new people or even to the people we already care about. It's tiring. But if someone cares enough to read it or hear about it, the Spoon Theory sticks! In case you're pressed for time, I'll summarize: Imagine a bunch of shiny, diner spoons in your hand. Each time you spend a little energy, take one away. So for someone with chronic illness, a spoon might be taken away with the simple act of getting out of bed (I know that's true for me). Miss breakfast because you're running late? Take away a spoon. Miss the bus and have to walk a few extra blocks to make it on time? Take away two. And if you have chronic illness, it's more than likely you have much fewer spoons to start with anyway...

That's the genius of the Spoon Theory. It helps people who are chronically ill help people who are chronically healthy to understand; to see that every decision and circumstance throughout the day has some kind of effect. Things most people don't even think twice about. In my days, everything must be measured and weighed. This can be very frustrating (even downright depressing). Whatever it is you feel, remember that you're allowed to feel it. Don't waste your spoons on feeling bad... about feeling bad! Most of us put so much pressure on ourselves to be strong and not let our illness "beat us", but why look at it this way? Chronic illness, by definition, is not going away -- so it's best not to make an enemy out of it (at least that's what I've found).

I give myself time to feel however I feel about my "spoon deficit". Sometimes I'm just pissed off. I want to cry or scream. Sometimes I'm actually quite motivated by it all. Sometimes I'm confused and questioning why life is just a little harder for me. Sometimes I feel proud that I've come this far without a full "spoon count". Sometimes I want to pull the covers over my head and give up or even pity myself (but this one can be tricky...I think it's important to put a time limit here, which I'll explain in a future post). No matter how we spin it, having fewer spoons isn't fair and it's more than okay to have a reaction to that. In fact, wouldn't it be strange if we didn't care at all? The way I see it, that apathy would mean someone else was in the driver's seat. Our feelings show we're still tuned in to our lives.

I might sound confident, but only recently am I starting to really own my limitations; to explain them to others without guilt. I owe a big part of that to the people who are now in my life (who I'll definitely single out later, don't you worry guys). These friends aren't easy to find, but they're out there. They've lightened this load for me and always, always understand. That brings me to the next point about the Spoon Theory. Of course, it's not all about LOSING spoons! Have a great talk with a friend? Laugh a little? Get a spoon or two back...there's no better medicine. Get a care package from a family member? Cuddle up with your dog? You'll definitely be up a few more. It's all a balance and it forces us to really think about our actions and weight what's important to us. I think that's the good that can be found here.

Instead of spending time feeling cheated, hurt or sad about our illness, is it possible that we can see our lack of spoons as an opportunity? It does make us stop and think about things other people don't have to, but here's an example of the unexpected good. Because of Spondylitis, I've come to realize who I can count on...who the people worth spending my spoons on are and who will replenish my spoon count. I've found ways to shorten my tasks at work because I have to. I've come to appreciate nights when I do have enough energy left to actually cook or clean - things I might otherwise see as mundane chores. Simple walks are tremendous pleasures. In some ways, dealing with illness can make you more efficient and much more appreciative of the spoons you do have. Thanks for reading :)

The Beginning

Welcome to my blog about living and loving with chronic illness. Truth be told, I've thought of myself as many things, but a blogger was never in the cards. I think three elements have brought me here:
1) A huge passion for the written word (reading it, listening to it, creating it)
2) A lifelong story, resources and a little wisdom I've collected that I think may be worthwhile to share
3) A strong desire to connect with others who might be drawn here.

By sharing my story and experiences, my hope is to highlight the ways I've found that good can come into our lives (often because of and not despite of illness). Certainly this looks different for all of us and it might take a while to see or understand how it's even possible. Even when we figure it out, it's also easy to lose sight of (especially on "bad days"). It's a struggle - for all of us - but I really believe the good is there waiting and we have to open our hearts to it. Whether good comes in the form of a real friend who we find content to just sit with us through a doctor's appointment, a career path that might be revealed, or any number of surprising ways... it's up to us to search. It's easy to sometimes feel our illness is the bane of our existence, but what if it's only what we make it? What if, when looked at in the right way, our greatest struggles could also be our great strengths? I hope somewhere in my posts, I show this to be possible.

The disease I live with is called Undifferentiated Spondyloarthropathy (really rolls off the tongue, I know!). Say it correctly five times fast and you'll be my hero. Spondyloarthropathy (also known as "Spondylitis") is a fairly rare form of arthritis that causes inflammation, stiffness and pain in every joint and connective tissue in the body. Because of the chronic pain, I'm also chronically exhausted. If you care to read more about Spondyloarthropathy and other relates diseases, give the Spondylitis website a glance:

Now that I've defined it, let's back up a bit to the beginning. I was a happy, curly-haired munchkin for most of my childhood and, in all the ways that counted, I really had it made. In fact, I still do. I had a mom, dad, brother and extended family that would go to the ends of the earth for me. I lived with a beautiful roof over my head, a big backyard and a safe neighborhood to grow in, pets to love, a private school education, summer camps, food 3 times a day. Undoubtedly my health was my biggest obstacle. Whether I wanted to admit to or not, 16 years of pain, medical appointments, exploratory tests and stumped doctors took a toll on me. You can only hear doctors imply that you're making things up so many times before you start believing it yourself. For years I convinced myself that the pain was normal...that everyone woke up unable to walk.

Of course in my heart I knew I was different and, since the average grade-schooler spends most of their day trying NOT to stick out, it wasn't easy. According to my parents, I rarely complained or missed school, but each day was just harder for me than the average kid. It was the simple stuff, really... sitting in car rides, bus rides or classes for more than 20 minutes made my back throb and burn with pain. I wouldn't be able to keep up with my classmates while walking in lines (hasn't really changed today), and then kids being kids, asking why I was "so slow". Although gym class as an institution is, in my opinion, inherently brutal for most kids (could go on for pages about my gripes with it), it was especially rough with an undiagnosed illness. I just couldn't do most of what was required: the stretches, the pull-ups, the timed miles. Year after year, I had gym teachers calling me lazy or making examples of me. Once, I had to run a mile alone in front of my class on painful ankles because my teacher decided I was "faking it". Given no other options, I still tried to suck it up; convince myself it wasn't that bad.

A chain of events led to my eventual diagnosis, beginning with Mr. Mack (my third grade math teacher and full-time dreamboat... but I digress...). Let's make no bones about this: I'm pretty awful at math, but in third grade I was especially awful. It wasn't for lack of trying; my mind was just...fuzzy. Being in pain and just becoming forgetful - it wasn't me- and luckily, Mr. Mack cared enough to pick up on it. He spoke with my parents about his concerns who then took me to more doctors. Because of the intense joint pain and because I had recently spent some time on Fire Island (a heavily wooded island off the coast of Long Island), all signs pointed to Lyme Disease. I never saw a tick on my body and didn't present with the common rosy patch one typically gets with Lyme, but doctors decided to treat me for it and see if that helped. I was hospitalized for a few days and, after being discharged, wore an IV port to school so I could receive antibiotic infusions for about a month. The pain and symptoms seemed to dissipate and so doctors thought they'd finally figured it out.

Unfortunately, it didn't last. In late middle school and early high school, the pain resurfaced and it was only then that I was referred to Dr. Thomas Lehman. I was told Dr. Lehman was the top in the field of Pediatric Rheumatology, but Rheumatology? Arthritis? It seemed impossible. I was 16 and could only think: "isn't arthritis a disease for the old?" Dr. Lehman did some blood work and sure enough - I tested positive for having the HLA-B27 gene (a strong predictor of Spondyloarthropathy and other autoimmune disorders). This is why I always say that getting diagnosed was mainly just a huge relief. Finally someone not only believed me, but they knew how to help !

I'll get into some more details later, but 8 years later this is why I'm here. I've had many medical experiences, but more importantly I've had many personal one. It hasn't always been a smooth road, but everything (the friendships, the relationships, the good, the bad and the downright ugly) has helped shape me. It's all made me see that in some very unexpected ways, Spondylitis has made me Maya. That's not to say it defines me, but it's okay to admit it's played a pretty major role in my life. In my eyes, it's made me stronger. I feel lucky to share my story and resources with you as it unfolds and to hopefully keep you company on your own journey. Thanks so much for reading...