To my friends

Hello Friends!

Haven’t heard from me in awhile, huh? You’re probably not surprised and you’re possibly pissed at me for the disappearing acts I’ve pulled over the years. I wouldn’t blame you if you were. I’m pretty pissed at me. I owe you some explanations. I’m going to put my usual carefree, jokey, “everything is fine” persona aside and be open with you, because you deserve that.

May is Arthritis Awareness month and Mental Health Awareness month (plus about a million others). You know I have both autoimmune arthritis and anxiety disorders. I don’t think I’ve ever told you how those both affect my ability to form and nurture close relationships. My absence in your lives has nothing to do with you, and everything to do with me.

I have no energy. I’ve spent most of my life cracking jokes about how I’m lazy and just like to nap. These statements may still be true, but they don’t tell the whole truth. I am so tired all the goddamn time. How I manage to get up in the morning, go to work all day, go to school two nights a week, and do homework is beyond me. It’s a testament to my body’s willingness to still “have my back” (so to speak) despite constantly being at war with itself. By Friday night, all I want to do is put my feet up on the couch and stay in that position until Monday morning. Even Netflix can be a struggle – and I do so love naps.

I know you understand that. But why don’t I call? Why don’t I text?

These are the ones I talk about the least. Panic disorder, generalized anxiety disorder. Around 17, I started having panic attacks, but even as a kid I knew there was something wrong with me. As young as 10 I can remember thinking how easy it must be to slip over the line between sane and not. Now I know that was anxiety talking. I worried almost constantly. I avoided calling people on the phone, though I’m honestly not sure what I thought would happen. I worried I wasn’t breathing right. I worried I had brain tumors. I worried I had ALS. I worried about my family – hell, I still worry about my family. I probably voiced some of these concerns to some of you disguised as jokes, because that’s my M.O. I worried so much that when doctors asked me if I worried a lot I said no because it felt normal to me. I have no memories of what it is like to live with a anxiety-free brain. Since getting some diagnoses, I’ve had an agoraphobic week when I didn’t leave the house because I was afraid I would have a panic attack, and periods of time when my anxiety is riding high and taking over my life, building during the time my dad was in the hospital, and culminating in the trip to hell (Montreal) two summers ago, where I was popping klonopin like my life depended on it, which, if you’ve ever had a panic attack, you know it feels like it does.

Since that point, I’ve been doing better, with medication and a short stint in therapy (until my health insurance decided to stop covering it because I was “doing well” – cured, I guess!). But there is a limited amount of human interaction, or plain old outside stimuli, that I can take in a day. Work, school, home. That’s my daily routine. Sometimes even the noise of the TV is too much.

I know that you’re there for me, but that I haven’t let you be. I don’t want to be “the sick friend”, but I don’t feel like I have any other defining characteristics. I feel so vulnerable all the time that it’s hard to open up and let myself be even more vulnerable. So I keep these things to myself, and let our relationships suffer while I try to pull myself up out of hole after hole. I basically go full turtle mode and hide.

I’ve been so focused on my own day-to-day survival that I haven’t been there for you sometimes when you might have needed me. I’m sorry for that. I’m sorry for all the fun we’ve missed, all the silliness, all the seriousness, big moments, little moments. I’m sorry that I might have made you feel like I don’t care or I don’t want to put in the time. At this point, it’s just embarrassing. What kind of adult person – I turn 29 this week, when did we become adults??? – can’t handle regular life and friends at the same time? My problems have taken a lot from me. They took dance, they took my drive and determination, they took my belief in myself, my ability to support myself (which I’m thankfully gaining ever so slowly). But I’m sorry they took me from you.

Each and every one of you is important to me. I think of you a lot, but I don’t know what to say anymore, especially not in person or over the phone. I admire each of you for the things you’ve accomplished and the people you’ve become since we were kids. I want to promise I’ll be better, but I can’t. I want to try. I’m not sure how to wrap this up. Conclusions have never been my strong suit. I guess I just hope to someday be worthy of friends like you.

My Oscars 2016 Best Dressed

It was a controversial Oscars this year – and rightly so, due to the lack of diversity in the nominee pool. I didn’t really watch, with the exception of Chris Rock’s monologue, and I was in and out even for that (hey, someone has to make dinner).

But this morning, I hurried to see the looks from last night, and there were a lot of great ones. Lady Gaga looked spectacular in her secret pants outfit, Alicia Vikander’s butter yellow, bubble hem gown was dreamy, Cate Blanchett was AMAZING, Priyanka Chopra was dazzling in white, Mindy Kaling’s blue and black gown was fierce; I could go on and on.

In the end though, it was the sparkling emerald green Saoirse Ronan who did it for me, which shouldn’t be surprising since I’m a sucker for green. Rachel McAdams was also gorgeous in green, but she just didn’t do it for me the way Saoirse did. The sparkling Calvin Klein dress was so simple but rocked a daring back. I’ve heard a little complaining about the mismatched earrings, but I loved it and was so happy to not see the standard over-the-top diamonds that are so de rigueur on the Red Carpet. See Saoirse’s look below, and other standouts from the night.

 

 

 

January Jewelry Spotlight: WWAKE

When I first started writing here, I made mention of the fact that sometimes I would divert a little from health and other similarly serious topics and talk about another passionate interest of mine: design, particularly jewelry design. Having moved on from my position as an e-commerce person (copywriter? coordinator? general runner-of/guru? We never nailed down an official title.) at a store that specialized in beautiful, giftable jewelry, I find myself missing being surrounded by lovely objects all day. So I feel the need to indulge myself a little here. Without further ado, please enjoy the first of monthly jewelry design spotlights!

Let’s just get the confessions out of the way right up front: I have an opal problem. Ever since receiving my Kathryn Bentley Opal Dream Ring from Of a Kind (similar style here), I’ve felt the need to collect more. And if you know jewelry company WWAKE, you know designer Wing Yau – recently included in Forbes 30 Under 30 Art & Style list – is an opal master. Her clean designs sit in perfect contrast to the mysterious fluidity of the stones. I want all of it. But right now, the design I’m most in love with contains no opals at all.

The Long Smeared Flake earrings have the potential to be the perfect everyday gold stud. The designer’s fingerprint is turned into a textured golden smudge long enough to echo an ear-climber silhouette and the matte finish on the 14kt heightens the sophistication of the design. I like to image these with a tailored blouse, a pair of dark navy wide leg pants, and a simple gold pendant necklace.

At $354 for a pair, I feel these are pretty reasonably priced – still an investment, but definitely an investment worth making if you’re in the market for a not boring pair of gold studs. And if you’re more of a silver tone fan, these are available in sterling too.

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photo from wwake.com

Not So Sweet: Cutting Back Sugar Consumption

It’s been too long–I went on vacation! Post about traveling with RA forthcoming.


I love sugar, in all its forms. I never skip dessert. I start my day with a breakfast cupcake, known to most as a muffin, and a nice big coffee loaded with cream and sugar. I confess that I am writing this while drinking said coffee and eating a delectable double danish (for the record, a double danish is a pastry figure eight, each circle with a different filling).

The generally agreed upon recommended daily added sugar intake, according to the American Heart Association, is less 6 teaspoons for women, less than 3-6 teaspoons for children, and less than 9 teaspoons for men. My personal added sugar intake falls somewhere far, far outside of the recommendation. I did the math, and it’s around 84 grams, or 21 teaspoons. That’s right in line with the typical American intake of 22 teaspoons per day.  I’m pretty certain this is an area in which I could stand to improve, so I’m committed to cutting back, but I don’t anticipate it being easy.

This is a big topic, and one we’ll come back to as I progress along this Rocky Road-less road, so for today I’m going to lay out the differences between added and naturally occurring sugars, and the consequences of overconsumption.

Added sugar v. naturally occurring sugar50 names of added sugar
Sugar is not the enemy, and all sugars are not equal. In fact, we need sugar to sustain life. Our bodies naturally produce this important sugar, called glucose, by breaking down carbohydrates, proteins, and fats (NIH). So while we definitely don’t need to eat spoonfuls of the stuff (sorry, Mary Poppins), we can’t really avoid it in the form of naturally occurring sugars. These sugars can be found in fruits, vegetables, and milk and they come as part of an awesome package deal that includes essential vitamins, nutrients, and dietary fibers. The dietary fiber slows the absorption of the sugar, making it almost impossible for a person to consume too much in this manner.

Added sugar is a different thing. We use it for flavoring, browning, and tenderness in foods, and as a preservative. Because there’s so much more of it and typically little or no fiber to slow it down, it gets absorbed quickly and hangs out in the liver, which can lead to big issues down the road.

Added sugar is very sneaky and has many aliases, laid out in the infographic from Sugarwise. White sugar, or table sugar, is the most common of these, and the one that I certainly consume the most of. The other caloric sweeteners like honey, maple syup, and molassess do come with some benefits, which we’ll explore in forthcoming entries.

Why should you cut back on added sugar?
Admittedly, I am not an expert in the subject of sugar (merely a fan of the sweet stuff), so for information, I turned to SugarScience, a great resource that takes the complex research behind added sugar and turns it into easily digestible bites. Most people know that too much added sugar in the short term can make you feel wired until the inevitable dramatic crash, contribute to tooth decay, and wreak havoc on your skin. The long-term consequences of a diet high in added sugar are also quite serious. Overconsumption can contribute to chronic diseases that include heart disease, diabetes, and fatty liver disease. SugarScience is currently researching the role that overconsumption of sugar plays in Alzheimer’s, aging, and some cancers.

There are rumblings of a connection between sugar consumption and autoimmune disorders, and many credit the elimination of sugar from their diets as life-changing. For example, take Sarah Wilson, who wrote an excellent piece that cites quitting sugar as an instrumental component of healing from Hashimoto’s Disease, an autoimmune disorder that affects the thyroid. The Arthritis Foundation advises that sugar may contribute to inflammation, an ever-present characteristic of autoimmune disorders.

I have been content to manage my own illness with conventional medications, but as I begin to bump up against the limitations of those medications (for there are few I haven’t tried), I also begin to see the importance of approaching health in a more holistic way, including the choices I make about food. In an effort to live my life the way I wanted, by eating what I wanted, I may have put limitations on the amount of healing my body is able to experience. I think it’s time to change that.

I will not be quitting sugar cold turkey. That was probably obvious to most readers once you reached “double danish”. I plan to begin by reducing my white sugar intake (like maybe I don’t absolutely need two packets in my coffee), making substitutions where possible by exploring other types of sweeteners that bring their own benefits, and modifying my meals to include more fruit to help satisfy my sweet tooth.

Do you monitor your sugar intake, and do you have any great recipes you can point me to? A girl needs some sweet sugarless snacks.


Please keep in mind, I am not a doctor, nor a research scientist, nor am I even particularly good at science. I have done my best to research and interpret correctly, but please take my words here with a fine grain of sugar, and as always, talk to your doctor for any medical advice.

Links to sources referenced: American Heart Association, Arthritis Foundation, Everyday Health, National Institutes of Health, PreventionSugarScience, Sugarwise

Alternative Treatments: The Hot Tub

hot tub inman oasis

image via cambridgelocalfirst.org

After a particularly stressful few weeks for both of us, Mike very sweetly booked us some time in a hot tub at Inman Oasis in Somerville. They’re super popular (for good reason) and since we aren’t great advance planners, we’ve never been before. It was about a million degrees (Fahrenheit) that day, so I guess there wasn’t an overwhelming demand for a dunk in hot water which worked out great for scheduling a last-minute appointment.

For some reason, hot tubs as pain relief never really crossed my mind. For the last 15 years I’ve taken all kinds of pills to reduce pain and inflammation but haven’t explored many alternatives, aside from one brief disastrous acupuncture session. That’s a highly entertaining story for another day. Ibuprofen, acetaminophen, naproxen, and prednisone have been my little helpers. There was a point when I was taking between 2 and 4 Advil a day for about a year until I weaned myself off of it. Luckily my weekly cocktail of methotrexate and Actemra keeps things mostly in check. But what else can I do for mini-flares and every day aches?

I know many people use alternative methods of pain relief. Massage. Acupuncture. Reflexology. Buckets of Biofreeze. But the hot tub was my first real foray into the world of what I call “all that stuff”. And of course, because my life is a comedy of errors, all did not go as planned.

The tubs at Inman Oasis are beautiful. We had booked a traditional wooden tub in a private room with an adjacent shower. They let us choose the music; I chose The Beatles because whale sounds are not really my thing. You can also bring your own music. They gave us cold water bottles and the shower was stocked with citrusy shampoo, conditioner, and soap. We settled in, nice and calm, ready for a rejuvenating experience.

I was in the water for all of 5 minutes before I started to feel nauseous.

(Just in case that alarms anyone, I do not have a heart condition. My cholesterol is a little high for someone my age and build due to Actemra, but not dangerously so and not enough to warrant medications. I do see a cardiologist once a year as a complement to my arthritis treatment. That way we make sure everything else functions in tip-top shape. So it is a not a heart thing. My best guess is anxiety. Heat and my anxiety are mortal enemies. Moving on!)

I spent the next 20 minutes in and out of the tub, while Mike anxiously looked on. I alternated between encouraging him to relax and not worry about me, and telling him I was going to throw up. I’m a terrible relaxation companion. I ended up out in the lobby where the lovely women at the desk gave me some water and an ice pack for my neck. Mike emerged about 5 minutes later, unable to let me sit in misery. As he paid, the woman at the desk said the same thing had happened to her the first time she went in a hot tub as well. So there may be hope for me yet, and I would like to believe there is because here’s the thing: my feet felt amazing afterwards. My ankles, which had been aching and complaining for weeks before, felt no pain. The twinges in my toes were gone, and the soreness on the tops of my feet had vanished.

Do I attribute this to the hot tub? You bet I do. According to this article from the Arthritis Foundation, warm water helps your joints by reducing the force of gravity on them and offering total support, decreasing swelling and inflammation, and improving circulation. I’ve been able to recreate the benefit I received from the hot tub by soaking my feet in hot water – without the nausea. It’s been nice to have an alternative to pills. I only wish I could extend it to the rest of my joints. I don’t have a bathtub so there isn’t an easy way for me to soak my shoulders, elbows, etc.

I plan to try hot tubs again, with some modifications like easing in bit by bit, and perhaps using a tub in a bigger room, or even outdoors for a little more air circulation. The tubs at Inman Oasis are more cozy and perhaps are better suited to a special occasion for some intimate and bonding relaxation. I will keep exploring other methods of pain relief. I’m already a big proponent of massage when I can get it. What are some of the methods you swear by? I’m open to any and all suggestions (even acupuncture).

Postscript: I really can not say enough good things about Inman Oasis. My nausea was a result of my weirdo body/mind, and they were very sweet about it. Lovely environment, lovely people. Mike has also had a massage there that he said was excellent.

Growing and Changing, and Freaking Out

This month I had to make some tough decisions regarding my professional life. I haven’t had any extra brain power for writing, so apologies to my two readers. For the last four years I’ve worked in a beautiful environment, in one of Boston’s most charming neighborhoods, with truly talented and wonderful people. The lovely thing about working in a small business is that you can become like a family. It’s hard to leave your family.

I have a tendency to put myself on the back burner. This is not some sort of “look how much I care about others” humblebrag, but a true and honest criticism of myself. I don’t always do it because I don’t want to inconvenience others or let them down. Sometimes I do it so that I can say to myself “look how much I give” when I feel inadequate, or to make excuses for when I’m too scared to make big changes – “I couldn’t do that. They need me”. This flaw is like a wolf in sheep’s clothing: big and bad on the inside, but cuddly looking on the outside. And I’ve been perfectly content to harbor that wolf, stroking its woolly head of lies (not a serious statement; I am not hysterical).

I know there are ways that I want to grow but change is scary and hard, so I’ve been sabotaging myself. I recite my mantra of self-sacrifice but what I’m really doing is avoiding change, and subsequently, growth. Change pulls the rug of comfort out from underneath you, and it’s up to you to fall or to fly. Up until now, I didn’t have faith in my flying skills. But if I’m going to help myself and live the kind of life I want to live, I have to believe in myself.

So this month, I gathered every shred of courage I could find and put the wheels of change in motion. I still feel like I’m in free-fall, but I’m trusting myself to turn on the jet pack. Or at the very least, pull the parachute cord before I inelegantly land flat on my face.

Juvenile Arthritis Awareness Month: JA and Me

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My 2014 Arthritis Walk team – my mom, my sisters, and Mike.

It’s Juvenile Arthritis (JA) Awareness Month and I’ve decided to share the story of my arthritis diagnosis and journey. So grab your beverage of choice, maybe some snacks, and a cuddly furry animal if you’ve got one, because this is a long story.

First Things First: What is JA?

I was one of the 300,000 kids that get arthritis, an umbrella term for the many diagnoses out there. My particular diagnosis is “aggressive erosive nodular seropositive polyarticular juvenile idiopathic arthritis” (JIA). That’s a mouthful and sometimes my jaw hurts, so feel free to just say arthritis. Other types of JA include juvenile lupus, juvenile scleroderma, juvenile dermatomyositis, Kawasaki disease, mixed connective tissue disease, and fibromyalgia. All of these illnesses have an inflammatory component. Read here for more information.

My Story

Up until age 13, I was a regular active kid. I was taking ballet classes at Boston Ballet 3-4 days per week, and did other activities with my Girl Scout troop like camping and rock climbing. But I had just come off a pretty rough year. I transitioned to a rigorous new school for middle school, Boston Latin School, which was a catastrophically bad fit for me. I’m really bad at math, and as it turns out, pretty bad at Latin too. I was wracked with anxiety about school and I had missed a lot of time in the winter because of Nutcracker rehearsals. That year I was Clara. If you know anything about ballet, you know dancing that role is a dream come true for a kid, but the school was not exactly supportive. I had also experienced bouts of sickness that we attributed to my anxiety at school. I would get sick on the bus, and I spent a lot of time in the nurse’s office holding a plastic bowl.

The summer was good, and I don’t remember anything particularly notable about it. Once I went back to school for 8th grade in the fall though, I began experiencing swelling and stiffness in the fingers of my right hand. Remarkably, I did not yet have hypochondriac tendencies so I shrugged it off when my mom wanted to take me to the doctor. When we got there, his reaction threw me. He seemed concerned. My pediatrician was a jocular man, passing out back slaps and jokes. I began to get nervous and suggested that perhaps I was just sleeping on my hand and squishing it (oh kids). Sensing my fear, he allowed me to try not sleeping on my hand for a week but ordered me back if it didn’t clear up. I’m sure he must have written the orders for lab work as I left that day knowing I’d be back.

After I went back, I was referred to the rheumatologists at Children’s Hospital in Boston. A lovely doctor examined me and reviewed my results, and very gently delivered a diagnosis of juvenile rheumatoid arthritis (JRA), as it was called back in those days. I wasn’t scared. I didn’t know what I was dealing with. Only some of my fingers were kind of fat. It seemed manageable. I was given prescriptions for naproxen and methotrexate, an anti-inflammatory and a chemotherapy drug respectively, a follow-up date, and I was off on the most frustrating, exhausting, and difficult journeys of my life.

In my mind, it seems like overnight I became a mess. It was as though my immune system heard the doctor and was all, “Okay youse guys, it’s official, we got us some invaders. Time to give ’em hell!” and then all my joints were inflamed. I could barely walk. I couldn’t sit up in bed in the morning without taking my naproxen. I couldn’t pull on my socks. I couldn’t tie my shoes. I couldn’t do buttons. Climbing the stairs was equivalent to climbing a mountain. I needed two sets of textbooks, one to keep at school, one to keep at home, and I still needed one of those super uncool bulky rolling backpacks. The only bonus was my friends would fight to be the one allowed to help me with my bag and take the elevator at school.

My mom is great. She really tried to help me continue my life as normally as possible. I went to school almost every day. I went to ballet, even if I could only stand at the barre and do the arms. She didn’t make me go, she encouraged me, because she knew it was important that I keep living my life. We even went on a planned Girl Scout trip (she was the troop leader) to Mt. Washington that involved staying in a hostel, hiking the mountain, and snowshoeing. I took my methotrexate in the morning and hiked halfway to the summit, which is pretty good for someone who could barely move. Snowshoeing was more challenging, but I gave that my best shot too.

Post-JRA diagnosis. Sitting out of class due to an arthritis aggravated injury, but smiling nonetheless!

Post-JRA diagnosis. Sitting out of class due to an arthritis aggravated injury, but smiling nonetheless!

Even though I was trying to keep going, I was struggling. I remember my lowest point. One morning my mom was helping me get ready for school by putting on my socks and I burst into tears. The only words I could get out between sobs were “I don’t want to be me anymore”. I still get teary when I think about that. No kid should feel that way, in pain and exhausted by life. My mom must have been devastated.

Of course, things evened out and the medicine kicked in eventually thanks to some help from a course of prednisone. I kept dancing, increasing the amount of days to 6 per week. I went on to a performing arts high school, the Boston Arts Academy, as well as summer programs with San Francisco Ballet School, Boston Ballet School, and Jacob’s Pillow.

I got a new rheumatologist at Children’s after my first one moved away. Dr. Jean M. Jackson – what a wonder that woman was! She kept me accountable when it came to managing my treatment, for by that time we had discovered my tendency to discard my methotrexate untaken in the trash, but encouraged me to live my life as a teenager. She encouraged me to keep dancing as I became more serious about it. She showed my flexibility off to her colleagues. I distinctly remember her calling someone in from the hall to show them that I could not only touch my toes, but put my hands flat on the floor next to my feet.

Then suddenly she was gone. I came to an appointment one to day to see a different doctor in her chair. I was told she was sick. I didn’t find out she passed away from cancer until years later. My new doctor was brilliant but lacked her bedside manner. I am very thankful to him for everything he did to help me stay well, but I didn’t like him. He actively discouraged me from dancing and said it was bad for my joints. This was my chosen career path, the thing I loved best, and the thing I was good at. When I finally had to quit my most beloved activity around age 18 after a hip surgery to repair a labral tear (and subsequently discovered my hip was eroding), his response was a simple “good”. When I developed serious anxiety and lost a lot of weight from panic attacks he seemed almost annoyed.

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Senior year of high school, shortly before my first hip surgery.

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Preparing for a performance in Italy, which marked the end of my dancing days.

 

 

 

 

 

 

 

I was transferred to Brigham and Women’s. Because of my experience with this last doctor, I was on the defensive when meeting potential doctors. A group of three examined me and asked why I refused to take a certain medication. I fiercely responded that I didn’t feel I had been adequately informed of the side effects and that in my own research I found ones that disturbed me. I hotly added that perhaps the other doctor thought that I wouldn’t research it, but I wasn’t stupid. Only one doctor chuckled at my feisty diatribe and kindly told me that while I was obviously very stoic, stoicism would only get me so far. He’s my rheumatologist now, and I couldn’t be happier about that.

So where has this journey led me? I tried a million different medications: methotrexate, both oral and injectable (ugh), naproxen, prednisone, Enbrel, Remicade, Humira, Siponi, Actemra (intravenous), and Actemra again, this time as a subcutaneous self-injection. I had a hip replacement. My right hand is kind of funny looking. Cortisone shots in my elbows and knees. Anxiety, depression, panic disorder.

No more dancing. No ballet career. No more performing.

I am aware that I’ve also experienced plenty of blessings. I’m blessed to have a family that has helped me navigate JA, from getting dressed in the morning (thanks Mom!), to giving me injections back when I was too chicken to do it myself (hi Dad!).  I’m blessed to have friends who are willing to cut me slack when I cancel last minute because I’m tired. I’m blessed to have a great rheumatologist who doesn’t want to settle for “good enough”. I’m blessed that there are advanced medications to treat my condition, and that my insurance covers them. I’m blessed to have had a surgeon who really knew what he was doing when he put in my shiny new hip. Blessed to know what it means to really value the health I have. But would I trade JA for complete and total health? Absolutely, unequivocally, without question. I accept my condition and my limitations, but I still would have preferred it to be different.

I don’t want other kids to have to struggle through life. If my story has resonated with you at all, please donate to the Arthritis National Research Foundation. Thank you for reading, and thank you to everyone who has supported me and cheered me on.