Tuesday, April 27, 2010

Busy Bee

If I can't provide a full post tonight, I'm hoping I can give you all a little smile. Yep - that's me on the right (the little chubby bee) proudly holding the hand of my brother Josh (the over-sized BLT sandwich). These are just two of the ingenious Halloween costumes designed and created by my awesome mom. I thought this classic photo went nicely with the title of this post (a title that also explains why I've been a little absent lately) One word sums it up nicely...FINALS! dun dun dun...

Actually, I'd say I'm managing my time better than previous exam periods in my life. I'm reminding myself that, like any stressful event, finals period always has a similar effect on me. I'm always exhausted, very sore and, instead of working on papers in the evening after a long day, I want to just snuggle in my bed and doze off. This time, instead of fighting against myself and becoming frustrated with my pain, I'm trying to just accept it all as part of the process; as part of me. And for the first time? I can honestly say I feel prouder because of my disease - because I've come this far while simultaneously coping with Spondylitis.

This ties in with a greater decision that I made halfway into this past semester. I decided to extend my masters program one year (from 2 years to 3 years). Around mid-February with four intense courses and 21 hours of field a week, I was burning myself out. I was skipping assigned readings that interested me (but I was too tired to get to), skimping on my hours at work, and just neglecting to take care of myself properly. I felt like I wasn't reaching my potential in any aspect of my life - not in school, not in my internship, not in my personal relationships and not in my physical or mental well-being. I met with the office of Advising at Columbia and together we sorted through options. Making the decision to take an extra year may not seem like a big deal, but for me it was a pretty significant event. It was the first time I gave myself license to really slow down and not feel guilty about doing so. Instead, I felt proud for knowing my body that well and for calling the shots in my life.

By extending a year, I can take a lighter course load each semester and actually absorb what I'm doing. I owe it to myself, to the people who care about me and my future clients to do the best I can in this program and stay as well as I can (in every sense of the word). Each day I'm learning that it's okay to take things at my own pace. I'll still get where I'm going, but I'll just have to be a little more creative with the journey...

Tuesday, April 20, 2010

Sorry Goes a Long Way

(This post is probably not for squeamish readers) Let's rewind to a few days before New Years Eve, 2008. I had been having headaches every day for about two months and, after visiting a Neurologist, I was sent for a "routine" MRI to check out the old brain. It was the kind of MRI where contrast dye is injected into your veins midway through to get a better image of everything. So I arrived at St. Francis Hospital, changed into my stylish paper gown, and was soon being inserted into the MRI machine. It was a little tight like any MRI machine, but I knew the drill and was just hoping my headache mystery would be solved. Halfway through, I re-emerged and was told to hold "perfectly still" by two MRI technicians standing over me. My head was secured, so looking at anything other than the fluorescent lighting above was not option. The needle went into my right arm and one technician said casually to the other, "Hm I'm not getting any blood when I pull back" (note: You must get blood when you pull back on the syringe because only then can you ensure that you are really in the vein). The other responded, "I'm sure you're in. Go anyway." They injected the dye, and well...they missed.

The dye leaked into my arm and, within seconds, I felt the most intense, burning pain I had ever known coursing through my body. Having dealt with chronic pain my whole life, my threshold is pretty high. But this was the kind of pain that makes you scream. I'll never forget those moments - the scared look on the technicians' faces, the way they scurried out of the room without explaining what was going on, my body still strapped to a machine. Within moments I had a fever of 103 and my arm swelled like a balloon animal (except not as cute). The head of the department came in and, even then, I knew he wasn't saying much for fear of legal repercussion. It was robotic. All he offered was, "It appears the dye has infiltrated your arm (really, you ass?). That is the pain you are feeling. Now I'm not saying you are exaggerating (oh phew, I was worried), but it's rare that we've seen someone in so much pain from this (so basically you are very clearly saying I am exaggerating). We do not like the temperature you are running, so we are admitting you into the hospital."

At that point, I didn't think it could get worse. But he next four days were a blur of needles, pain, procedures and medical mishaps. I wont go into all the details, but one episode is pretty central to this post. The Neurologist who had initially ordered the MRI attempted to perform a spinal tap on me. He wanted to make sure the fever i was running was not from an infection in my spinal fluid. It seemed unnecessary because it was pretty clear the fever was due to the radioactive dye in my body, but before that day I couldn't say enough good things about that doctor. I knew he cared comprehensively and compassionately for my grandfather before he passed away and I knew my parents trusted me in his hands. But that day, this doctor walked in and didn't seem his cheery self. He was complaining of "sharp pains" in his leg and of "having a bad day". Does anyone else feel like that's a odd to admit to a patient you're approaching with a 22 gauge needle? He got right down to business. First, he made my mom and her sister Ann (my "other mom") leave the room, saying they would be a "distraction to him" (Warning sign #1). There went my hand to hold. When I asked for a "minute" before he began, he said "he didn't have all day" (Warning sign #2).

As I finish this story, keep in mind this doctor knew I had spinal arthritis and, consequently, this procedure would already be more painful and risky for me than the average bear. According to the nurse who was in the room, he injected the numbing agent and did not wait nearly long enough before attempting to get a sample of spinal fluid with a second needle. Not only was I not numb, but he missed and hit my vertebra! He failed to get the sample that he needed and, even though I believed I had felt the worst pain the day before, this trumped it. I pleaded with the doctor to stop for a moment, but it was like his alter-ego had stepped in. He snapped back, "Listen, I already told you I don't have all day. Now suck it up. Everyone has their cross to bear, Maya." After days of torture, I had reached my wit's end. I said through tears, "Okay that's it, you have no idea what cross I bear and no right to treat me like this. Get out of my back and out of my room!" (Impressive, huh?) The nurse held me and just apologized for the way he treated me. Surprisingly, that was the only warmth I felt from the staff during my stay at St. Francis.

So Happy New Year!! Right? The only good memories I have during those several days was the family by my side throughout it all and John who drove 6 hours to be by my side. I remember sitting with my mom who stayed every night (she always has - I've never spent a night in the hospital without her). We were just sitting there counting down until 2009, listening to my roommate Paula complaining (and farting, but I wont elaborate there). We just laughed and laughed at the absurdity of the situation and the way we were ringing in the year. My dad joined us the next morning as always and I knew it was going to be okay.

Both fortunately and unfortunately, I will never forget those days. Unfortunately because, of course, it has made me distrusting of medical professionals and procedures (especially MRIs). I think that's only human. While I'm working hard to overcome those feelings of distrust and anxiety, I'm sure they will never disappear completely. But I also learned to truly advocate for myself during the fiasco. As someone who will always be linked to the medical world, this was actually an invaluable lesson for me to learn. After all, if I don't have my own back, who will? As I found out that December, doctors are not "all-knowing". They are not always right or fair or kind. They are human, just like I am. And most importantly, they shouldn't be leading my treatment - they should be partnering with me in it. Could I have learned this lesson in a less invasive and traumatizing way? Sure. Would I trade it to have those days back? Probably. But I have to see the silver lining somewhere because otherwise, when I think back to this experience (which is quite often), I would be plagued with anger. And I don't deserve that.

I know that the entire experience would have been much less traumatic if I heard two simple words from any of those doctors: a simple "I'm sorry." This phenomenon is actually discussed very well in this New York Times article called "Doctors Say 'I'm Sorry' Before 'See You In Court.". It explains how one doctor who made a major mistake courageously admitted it. The article also reports an interesting statistic: "At the University of Michigan Health System, one of the first to experiment with full disclosure, existing claims and lawsuits dropped to 83 in August 2007 from 262 in August 2001." It identifies prominent academic hospitals such as Johns Hopkins and Stanford that are moving towards more disclosure and communication between doctors and patients. I really hope this movement spreads because there is definitely something to this. Doctors are some of the smartest people around us and you need only to read a few posts back to see the reverence I have for the good ones. But really, saying "I'm sorry" - especially when someones pain in the direct result of your actions - is so basic. It's what we're taught in conjunction with tying our shoes - an empathy for others, admitting when we're at fault.

Today I've forgiven because I have to- not for them because I'm sure they've long forgotten me. The forgiveness is for myself because, in this world, we can't always count on "I'm Sorry" to make it better.

Friday, April 16, 2010

Through A Dog's Eyes

Take a look at this inspiring new series coming to TV! My vice is reality television (I'll admit it), but this is something actually worth watching and it fits perfectly with my belief that animals are the most enlightened among us. Although I have seen these working dogs in action helping "their person", this video still made me tear up.

I've been planning to write a future post about a guy named Nick Anderson. I met Nick at Muscular Dystrophy Camp years ago. Nick lives with an amazing working dog named Audi (see the photo to the right) and says, "having [Audi] as a part of my life has been one of the best things for me. "

This trailer is particularly moving for me in the wake of a major health scare involving Riley, my family's Bernese Mountain Dog that basically means everything to me. It looks like he's going to pull through (thank goodness), but it reminded me just how important my animals are to me. I know that, no matter where I am or what I'm doing with my social work degree, animals will be part of my life and hopefully part of my career. I have this image of owning a private practice where kids come in excited to see the animals (and ideally, me too). They can talk to me and receive social work services while either just sitting next to and petting the animal or even helping me care for them. Animals aren't just important for people living with chronic illness - I really think they're therapeutic for everyone: the way their fur feels on your hands, the way they're tuned in to our feelings (maybe more than we are), the warmth of their bodies curled up next to you. Not to mention the loving and excited way they greet you simply because you came back.

Read this review of "Through a Dog's Eyes" and don't miss this premiere on Friday, April 21 at 8pm ET/ 7pm CT (Check your local listings) - I know I'll be watching !

Tuesday, April 13, 2010

Winning Doctors

There's no denying that my family, friends and I have been to our fair share of doctors - the good, the bad and most who fall somewhere in between. But there are also docs that have gone above and beyond and, since my ultimate goal here is to help others living with illness, why not pass along some gems I've found? They're all in New York State - I hope this helps!


Dr. Kevin Tack, MD, Long Island
I'm going to go ahead and say this is is the best doctor I've encountered. Not only is Dr. Tack very kind, but you can really tell how much he cares about his patients. He starts every appointment exactly on time, he is thorough and always calls you back. If I haven't sold you - it takes a good doctor to make the detailed discussion of GI issues bearable, and he does :)
Manhasset Medical Associates
1516 Northern Boulevard
Manhasset, NY 11030-3006
(516) 627-3717


Dr. Thomas J. Lehman, MD Upper East Side Manhattan
as I've mentioned in earlier posts, Dr. Lehman is my pediatric rheumatologist. He's been in my life for 8 years now and was the one to diagnose my Spondylitis when everyone else was stumped. He's top in the field and literally wrote the book on Spondyloarthropathies and other related diseases: "It's Not Just Growing Pains." He caught my illness before it got really out of control, so for this I'm forever grateful to him.
Hospital For Special Surgery
535 East 70th Street
New York, NY 10021-4823
(212) 606-1151

Internal Medicine

Dr. Bernard Schayes, Upper East Side, Manhattan
I've only recently started seeing Dr. Schayes, but already I like what I see. Not only are the receptionists and staff in his practice friendly and accommodating, but Dr. Schayes himself is very kind and seems to really listen. I just feel at ease under his care, and in this day and age that goes a long way...
162 East 80th Street
New York, NY, 10075
Phone Number: (212) 535-3338

Dr. George Petrossian, MD, Long Island
Luckily, I've never had to see Dr. Petrossian personally, but he has taken such good of my family (my wonderful grandmother in particular) that he has to be on this list. He is also the father of a high school friend, so I know he's just a great person. If I or anyone I loved had a heart issue, Dr. Petrossian would be my first call.
New York Cardiology Group
1405 Old Northern Boulevard
Roslyn, NY, 11576
Phone Number: (516) 484-6777


Dr. Robert Schreiber, Long Island
Nassau Chest Physicians PC
Dr. Schreiber has seen and helped a number of my family members. He is an extremely intelligent, talented and empathetic doctor and I'd recommend him to anyone!
233 East Shore Road Suite 112
Great Neck, NY, 11023
Phone Number: (516) 482-7810

Obstetrics & Gynecology:

Dr. Anita Sadatay,MD, Long Island
I've never actually seen her myself, but my mom swears by her. She says she's the best - friendly, available and just a solid professional.
900 Northern Boulevard
Great Neck, NY‎
(516) 466-0778‎

Podiatry/Podiatric Surgery:

Dr. Simon Young, Upper East Side of Manhattan
So I hate to stereotype here, but the Podiatrists I've been to are generally...well...foot people (not so much people people). Dr. Young actually knew about Spondylitis and the high risk of infection that come with taking Humira shots. He was extremely thorough, clear and gentle. Also, if you're looking for the least painful foot injection possible, this is your guy.
110 W 96th St
NY,NY 10025
Phone: 212-316-7000


Dr. John Cottone, Long Island
Going to the dentist gets less and less fun the older you get, but I can honestly say Dr. Cottone makes the experience as pleasant as possible (and that's saying a lot). He couldn't be nicer and really cares about his patients - not just their pearly whites!
Berry Hill Dentistry
26 Berry Hill Road
Syosset, NY 11791
Phone: (516) 921-1717

I'll be adding to this list as time goes on and hope you'll all send your suggestions my way. I have a few appointments lined up with new doctors (They say I'm an adult now, so I guess I have to go to adult doctors)
. Stay tuned

Thursday, April 8, 2010

A Keeper

oday feels like a good day to really introduce my boyfriend and, at the same time, try my best not to embarrass him ;) As I mentioned in my earlier post about Muscular Dystrophy Camp, I was 16 when I first volunteered. I'd say going to MDA camp was the best decision of my life, thus far. Not only did it set me securely on my career path, but it brought some of the greatest human beings into my life. When I met John during my first summer, he was immediately on my mind and that's pretty much where he's stayed ever since.

John became involved with camp mainly because of his two sisters, Sara and Laura, who both have a form of Muscular Dystrophy called Friedreichs Ataxia. I had a long term high school boyfriend at the time (who also volunteered at camp), so obviously I never acted on my feelings for John. He was just special and it shone through in every interaction. Watching him dance with his sisters at the annual camp dance (see the photo on the right) was what did me in - let's just say it was the biggest crush I'd ever had. After camp, though, I always headed back home to Long Island and John stayed in Rochester. Eventually he started college in upstate New York and a year later I was at school in central Maine. At our age, we were worlds apart, but still kept in touch here and there. He was my buddy...the kind that made me nervous just to think about...but a buddy nonetheless. Even then, I knew he had one of the best hearts I'd known so, no matter how long we went without talking, I never forgot about him.

Over the years, I met my share of boys and had another long relationship in college. I wont go into details, but at the end of it all, I was left believing I'd never find someone with the strength or capacity to care the way I could...or a guy who could handle the challenges of my illness. I got to a point where I felt there just wasn't a match for me and couldn't imagine trying again. I truly didn't want to. It was Senior spring and I was finally getting used to the idea of being alone. I spent a lot of time with my own thoughts that year which was crucial to knowing my own strength. It was just me and, for once, I came to a point where I was fine with that.

And then, without warning (like most great things), John came back into my life. We started talking consistently around my 22nd birthday that year and haven't stopped since. He was spending that first year after graduation in Washington D.C. doing research at the National Institute of Health, while I was still in the wilds of Maine. Logistically it made no sense at all. But still, we talked. We talked every night for anywhere from 1 to 6 hours.

I always knew I liked John, but I never knew the connection we could have. We both were just shocked by how unexpected and easy it was and it didn't take long at all before my walls started coming down. A few weeks in, I made the first real move and told him how I felt (brave, I know!). I figured, hey best case scenario? What we have now.

John bought a ticket to see my a cappella group perform in Boston and visit his friends about month later, but the more we spoke the more we both realized the great thing we had found. Funny how we had waited years, but suddenly it was impossible to hold out just a few weeks. John called me up out of the blue and said he wanted to book a flight for that weekend too. It was pretty surreal - suddenly preparing to see my now boyfriend who I hadn't seen for over three years - not to mention the romance factor. That kind of storybook stuff just didn't happen. At least not to me.

Before I knew it, I was off to pick him up at the Portland Airport. I had an hour-long drive to let reality sink in and, as I got closer, I remember feeling like my heart would pound right through the seat belt and out of my chest. But then I saw him waiting and he looked as great as ever. Flustered beyond belief, I stopped my car in the middle of the jetport (smooth move) and he was just as suave walking right through a puddle without noticing. We were two nervous goofballs, but it was just right and that first kiss made it all real.

After that, the feeling was something like coming back to life. We spent most of the weekend talking with goofy smiles plastered on our faces. On Saturday we went to "The Breadbox", Waterville's finest restaurant, and we both said it was then that we knew we were in love. I, for one, had never been more sure of anything

I visited John in DC that Spring and it only got better. He also came back up north a few more times that Spring and made a point to be at my graduation in order to meet my family (who all loved him instantly). He helped me move out and drove me back home to my parents' house on Long Island where I lived for the next year. Shortly after, John chose to study at a Medical School close by and the rest is history.

In relation to my illness, John makes me feel like so much more than a Spondylitis patient. Even on my worst days, it's just not an issue. It never has been. Never once have I felt I was disappointing him by changing plans or being worn out and there's just a level of understanding between us that's hard to put into words. He always makes the trip down to the city for me since he knows it's tough on my body to travel. It's the subtle things like that, really, that mean the most. He is one of the most empathetic people out there, which will of course make him an amazing doctor, and he always finds ways to make my life better. Of course, I try to return the favor.

On more than one occasion when I worry that Spondylitis will keep me from being the consistently strong partner he deserves, John reminds me that my illness just a part of me - part of what's made me the person he loves. It took a while to let that sink in, but now I know what it feels like to be unconditionally loved in return. It's hard to put that into words. Above all, though, John is just my best friend and yes we have to work at it just like any other couple, but we only learn more about each other as time passes. My family adores him and I truly feel like part of his (see the photo on the right). They've all been nothing but loving and totally welcoming from the start and, while there's much more to say about those Ferrarones, for now it suffices to say they're a profound gift in my life.

I've got a keeper, wouldn't you say?

Saturday, April 3, 2010

Spring and My Doctor Wears Cowboy Boots

What a gorgeous Saturday in New York. Correct me if I'm wrong, but I think most people look forward to winter's end. To me, winter is great in the beginning. I love the holidays, the winter wonderland, the coziness... I really do. But after a while - as soon as the slushy/brown/grumpy phase of the season hits - enough is enough. Today it's like the city is alive again. I woke up to birds chirping, people whistling and kids laughing. But when winter ends, I believe I feel a sense of gratitude much greater than the average bear. I am thankful for Spring in every muscle, joint, tendon and ligament of my body.

My body is usually ecstatic about the lack of precipitation and cold - it means greater mobility, less pain and having the ability to be active for the first time in months. However, due to the infection in my toe a few weeks ago I had to stop taking my Humira shots. Unfortunately, that's the trouble with the medicine. While it keeps the inflammation at bay and stops the progression of my disease, it also makes me extremely susceptible to infection. Because of this, it's almost impossible to stay on the shots for an uninterrupted period of time and then I get these bad periods. So that's where I am today. One week of missed shots is okay, but four is trouble.

Luckily, my toe is all healed up now and I just got the "OK" from my doctor to start back up again, but by now the Humira is out of my system. So I'm having trouble with basic tasks like bending over, opening doors, breathing deeply or walking. When I'm feeling this way, it's easy to forget that I'll feel better again. But I always do. It's a cyclical disease and I have to believe this is just a phase - otherwise my mind will go nowhere good. And I wont let that happen. Not only am I spending the majority of the weekend with John, but my parents are visiting the city this Sunday and will bring the shot then. So I think the combination of my boyfriend + parental love + meds will do the trick. I'm really looking forward to being out of this pain soon.

In the meantime, I thought I'd keep on the subject of poetry and share another piece - this time about my illness. Interestingly enough, the end of my senior year of college was the first time I was able to write about my battle with Spondylitis. It went through so many drafts that I lost count (the way it should be, of course). It's the first time I tried to describe the nature of the pain, so I'd be curious to hear if it resonates with other people who might be dealing with chronic pain. And by the way, my doctor does wear cowboy boots. Every day. I still don't know how I feel about this piece, but thanks for reading and enjoy this beautiful weekend :)

Following An Unpronounceable Diagnosis
From A Doctor Wearing Cowboy Boots

I’m sure I was plucked from some infant
field in the sky with wild limbs set to scare
my young parents. I wish I had warning

for pain like dry stones knocked together,
blue joint-flint, always angry fires
never burning low, about hands

like cut–string puppets or this ragged body
I’d drag behind. But after so many years
of needles and coddling, I understand

now that when you plunge pink
and needy into a world that’s too afraid,
all you’ll ever hear until you forget

what health tastes like is: Forget
this pain, child, your name means flowers.
You’re our undulating miracle.