Lupus Conversations

I’m heading back to work after a flare and I have to say- to the eye, I look completely like myself. Plus, I’m thrilled to talk to humans and not just my dog and John. As a result I have that first day of school excitement pumping through my veins. Freedom!

This sounds ridiculous so bare with me on this one. Having a disease where you don’t necessarily look sick can be challenging. People are a lot less likely to take your pain seriously. Sometimes I feel, emphasis on the feel, as though people might wonder how much of this invisible illness is real.

This insecurity creeps into my daily life and occasionally finds it’s way into conversations with John as I search for his approval that no, I’m not crazy, and yes, he knows how sick I’ve been despite my best efforts to conceal my discomfort.

On our drive into work today he had me hysterical as I stared at myself concerned that people might just take me as a phony looking for a long weekend.

Me: sometimes it’s hard to go back to work when you look this good (meaning not sick)

John: are you Zoolander?

I get it. I’ll be quiet now! Thanks for the laugh.

Year to See.

What happens when you have been flaring for nearly three weeks? Your mind goes haywire with thoughts and mind boggling ideas. Case in point, last week I had an appointment with my  ophthalmologist to get my eyes examined because of the medication I’m on for lupus (see here). Hydroxychloroquine, which is used to treat and prevent malaria, can also be used for lupus and rheumatoid arthritis. And for all that it does for my health, the yang to it’s yin is that Hydroxychloroquine can also cause retinal toxicity.

So there I am, sitting by myself with nothing but my thoughts – Never a good thing when you have an overactive imagination. Great when you are a kid. Terrible as an anxiety ridden adult. So I’m zoning out to the point of what-the-shit when a profound thought crosses my mind. Now I need to be transparent for a hot minute before I tell you about that thought. I have not gotten my eyes examined in four years. I am supposed to go every 6 months. Six Hail Marys…? Seven?

The thought that crosses through my mind: The doctor is going to tell me that I’m going blind. My mind instantaneously races on an adventure because now I’m focused solely on how my life will be different as a result of losing my vision.

I decide that I’m going to have to put in my notice at work immediately. They tell me that I can take a sabbatical. John will need one too so we are going to have to tap into our savings. We are going to explore the world and the journey has to begin tomorrow. Our first trip will start with that great United States road trip John has wanted to do since the day I met him but I kept postponing because life got in the way. We will map out a route and see where it takes us, planning only the hotels and motels in advance. Dog friendly only because our pooch rides with us.

“…Ta-lee-yuh? Tail-yuh?” – That’s my cue. For the record though, it’s pronounced Tal-yuh. 

I’m pulled out of my trance and into a dimly lit office with a man with an equally bright personality. We talk about my eyes, he dilates them for tests, I do some Hail Marys, and we praise my excellent vision- to no effort of my own, just genetics.

I walk out of the appointment with my vision fogged and as John drives me home I tell him about the question. I find myself exploding into a frenetic explanation of how our wedding would have to be changed. I tell him that it is going to be offensively bright. And by offensively bright, I mean to say that it borders on downright tacky. Additionally, I need to make it to China because I promised myself that I would. You can stay or you can come with. But I’m going. And I want to ride in a hot air balloon. Our conversation gets to a point where we are actually bickering about the logistics of my make-believe plans. The safest choice is to put the kibosh on the conversation and come back to it at a later date and time.

John expresses how he doesn’t understand my minds ability to operate at such a continuous rate of thoughts per second. I don’t fully comprehend this either because I really would find it preferable at times if my mind looked more like this:

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and less like this:

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All in all, the trip to the ophthalmologist taught me a few things about myself- For one, I recognize that I was challenging my health. This is something that deeply bothers me because I do not encourage it or advise it in any way. I was avoiding going to the ophthalmologist because I was fearful of what they might tell me. Going with the theme of transparency, I hated the prospect of someone telling me the very medication which I am dependent on could be hurting me. Avoiding getting my hair cut for a year to avoid a bad haircut experience only to wind up with worse hair because I refuse to get a haircut is one thing. Losing my vision because I don’t want to hear that my medication could be affecting my sight is another. And while the focus here is about my fear of losing my vision, it is really about losing anything.

Ultimately, the what would you do question could be applied to a multitude of situations and it had me thinking about my own life with lupus. When I was diagnosed I genuinely felt as though I lost something. The idea of giving up any other aspect of my health is what puts me in a tizzy. If someone had given me a years notice on this whole lupus thing, how would it have shaped me? Can we even live in a world of what ifs?

My trip to the ophthalmologist (and mental adventure into la la land) allowed me to reflect on how limiting we can be to ourselves in our adult life. Does it take a health freak out to appreciate what we have and what the world has to offer? We can’t avoid living because life will always get in the way of plans. And none of us can predict the future because we are not ancient Greek oracles. Maybe we have to ask ourselves questions that unnerve us to figure out what it is that we want out of our existence.

I part with this question: Why haven’t we gone on the Great American Road Trip that we keep talking about?

And this answer: We are going on this damn road trip!

And then one last addendum to the original answer: But after the wedding because I feel like I’m really busy until then.  Because I have to be slightly practical.

Reflect: You have one year until _______, what do you do?

Happy Fall

Not to rush the seasons, but when I hear Septemeber, I think fall. Yes, I know we have until the end of the month until summer is “technically” over, but wake up! It is now dark out at 8, CVS is selling Halloween candy, and pumpkin beers are in full swing. It’s fall. Fall has classically been my favorite season- I’m a typical New Yorker so I will tell you that “I love that we have our seasons.” The vibrant autumnal colors and knee high boots get me every time- what can I say, I’m basic.

What makes this time of the year even better, you ask? Running.

A true runner can run in any condition, right? Well, I can’t. 

I get dizzy when it’s too hot.

I get a pounding ache in my ears when it’s too cold.

If it’s too bright outside, I feel blinded and miserable.

Essentially, I am goldilocks and I’m looking for my perfect conditions. The perfect conditions are September. Is there anything sweeter than a warm September air with a cool fall breeze? And for that reason, I love a nighttime run in the fall- not too hot, not too cold… it’s just right. So that’s what I did- called a bestie and went for a nice, slow paced, 2 mile run on a toasty fall night.

So happy fall, and happy running!

Pobody’s Nerfect

I grew up under the impression that beauty is in the eye of the beholder. I was, and am, a hopeless romantic that trusts body chemistry, pheromones, and a little bit of luck will bring us to the right person if we allow for love. What is attractive to me might not be attractive to the next person- and that’s alright. It allows us to find our person both emotionally and physically. That may also be why I am under the impression that I have the prettiest dog in all of the land, but my dad calls her Frankenstein. And strangers call her a “little porker.”

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Where am I going with this? Well, I have a gripe to pick and I’m not sure who it’s with- men, women, society, culture, Kim Kardashian?! Blaming Kim K would be too easy for this, it’s the fault of us all. We are a population in love with a very elite definition of beauty. A simplified and stupified definition of beauty that puts unreasonable pressures on us all. My frustration came to a head this morning due to a commercial for waist training.

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It’s fairly self explanatory- you suffocate your internal organs to “train” your waist so it hates existing. And this movement, endorsed by qualified nutritionists and health connoisseurs reality television personalities (see: Kardashian Klan and Snookie) is actually being sold on television now too. Because, really? Who doesn’t love the sensation of losing sensation? And who actually needs ribs? Or correct organ placement?

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Even during the Victorian Era they had a sense of humor for the ridiculous nature of “tight-lacing“. They also understood the need for an adorable partner in crime (the dog).

So here’s my issue: WHY? I understand body modification, clearly. We all know I’m not exactly opposed to plastic surgery. But what is wrong with your natural waist line? As I write frequently about health and working out, I continuously reflect on the reasons behind why I do it all. Health for my body and mind are paramount. But then there is this lingering obsession with physical confidence. Does it come from me? Or does it come from society? So deeply ingrained that we cannot envision a world without the fixation.

This internal dialogue recently came to a head with wedding planning- ladies, have you felt the pressure?! My hairdresser innocently asked me what my workout regimen was now that I’m engaged. I felt slightly ashamed that the night before I downed a “super burrito” and the two sides I chose to eat with it were french fries and macaroni and cheese. I wonder how many people have asked John how he plans on sweating for the wedding? I have a guess- zero. Did John feel guilty about what he ate? I have a guess- no. And this is not a criticism of him, or me, or my hairdresser. Because, not to completely generalize, as a society this is what we expect from men and women:

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Leonardo DiCaprio does not need to worry about his “dad bod.” Leo can always galavant with a model or two. Or a tribe of models.

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My mom always told me: Pobody’s Nerfect. Not many people are built like Dita von Teese- but neither is Dita von Teese. I want to workout because it makes me feel stronger and healthier, but not because I feel bad about my body. And there are days that I do, as delusional as that may be. How do we fix that? A society that spends millions, if not billions, of dollars telling us we can be prettier, skinnier, curvier, more muscular, blonder, tanner, stronger, sleeker, and more wedding ready.

Perhaps we find the reasons we respect ourselves. We admit something we love about ourselves. And we allow other people to love those things about us too.

Smile

Over the past two years I have fallen victim to the cult of yoga- I chant “shanti, shanti”, om, and listen to a harmonium… it looks a little an accordion and a mini piano had a baby. I wear yoga pants and yoga shirts, and I hate socks and shoes. One thing I love about a good yoga class is the inspiration you can take from it. Every teacher has their own practice and style, but I love a good story before a lesson.

In class today, my teacher discussed the nature of life in general and how it can have a propensity to become overwhelming. She’s a new mom and spoke to that, something I can’t fully embrace at this point in my life, but I’m sure it’s more challenging than a 30lb pug mix. It was an authentic dialogue and wonderful to hear from a yoga instructor when often they appear as though they have it all figured out – like life is simple once you find the balance and can hold a scorpion pose.

I recognize the ignorance in that statement, because who really has it figured out? I don’t want to butcher my teachers words, or put words in her mouth, but today spoke to me. When your life becomes overwhelming it is easy to half-ass (she didn’t say that, but see, you get the message) anything and everything. We become susceptible to falling victim of that crushing sensation and rather than fighting against it, sometimes we give into it. So what did she suggest today? Smile. Persevere, fighting through it, be the best version of yourself and give all of yourself to everything you do.

As the summer winds down and I transition from the easiest days where the sound of an alarm clock is sinful to days of actually having responsibility, I know i will have to fight against some anxiety associated with deadlines and grades and observations. So is life. It’s a generous reminder to myself that when I wake up in the morning I have to thrive and rise to the occasion. We have all had a woe is me moment, and actually, I’m not against wallowing in those waters for a little while. But at a certain point you do have to overcome. I write as a reminder to myself that I am a human, but I want to be the best version of myself that I can be as often as I can be. So let this be a reminder to smile – a mental note on a more taxing day.

Walking is the new Running

New York is HOT, HOT, HOT! 

It’s the kind of heat where pants are not an option and sitting in darkness with the air conditioner blasting seems like the only option. My dad, who is currently visiting from Florida, thinks it’s moderate weather- great for a run. But I don’t. Sure, I could go in the morning. You can get up at 6 a.m. for a run too, but you don’t want to either! Sure, I could go late at night, but, no thank you. So what’s a girl to do when the most convenient time for a workout is when the sun is at its highest point in the day?

Walk.

How do I view walking? I have bashed on walking a lot. My dear friend loves to walk and will power walk every day if time allows her to. Occasionally we have crossed paths as I’m on a jog and she’s on her walk. I often tease her about walking, or have asked her to try running and in response she will ask me to walk. She says that it’s not her thing. I say it’s not my thing. But, to reiterate the point of this post, it has been hot. So, I’ve been walking.

In defense of walking, it is much harder when you walk faster- and she walks fast. I now understand power walking and what that actually means. And, we’ve had the chance to actually catch up on life.

It’s to the point that I went out for a run, did a block and couldn’t figure out why I was so sore. Oh, yes, it’s from walking.

Moral of the story: Walking isn’t that bad- do the same distance, push yourself, sweat a lot, take a nap. And it’s better than nothing! Another way I’ve been beating the heat? In home workouts- my new favorite (And by favorite, I mean that I hate it so bad because it is actually difficult):

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More on that later.

Down the Rabbit Hole

My summer has flown by- not in a good way, not in a bad way, but definitely not in a “I worked out religiously (unless you count 30 straight days) sort of way.” Following my 30 day stint with Bikram, I wanted a break from the expectation of working out. I wanted to sleep until 11 and not have any responsibility associated with sweating or doing laundry. I realize that the last two are obligatory in the summer. Whatever.

The other day my dad came into town from Florida so the family got together for our yearly barbecue. There were a lot of “so, what have you be doing lately?” kind of questions. I couldn’t actually think of anything other than finishing yoga! I did not bike ride around as frequently as usual, or run, or see people from far away. I have no idea how I spent my summer, and that is scary! What have I done?

OK, truth be told I did plan a lot of my wedding. Dress, bridesmaids, their dresses, DJ, florist, photographer. As a result, I have also gone off the deep end on the internet- the rabbit hole, so to speak. Hours would go by and I had created a new Pinterest board, but I didn’t have anything to really show for it except for a make believe fantasy wedding that looks pretty much like every other rustic chic Pinterest wedding. And today I hit an all time low and I went shopping on amazon:

Pug-Dogs-Cake-Topper-Figurine--CLONSure, it’s cute, and yes I love pugs, but girl- you need a life. Time to get off the couch… put some makeup on, make myself presentable to the world. I think I’m even going to go crazy and go into Manhattan. I need a little culture in my life.

Taking a Break

Good morning ladies and gents- it is 11 a.m. and I am officially a little more wide eyed than I was 10 minutes ago. As an early riser, I feel like I already missed half of the day, but I’m going on a whim here and saying it was my body begging for some rest. My page was quiet because I went on a mini-vacation to Montauk to go camping at my friend Beth’s site for a few days. I had to remind myself that I’ve never been camping and I also do not like bugs, but I felt confident that I would be into sleeping at a camp site by the beach. Plus, I have never been in Montauk and I’ve heard it’s beautiful.

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me- that barrier island off of Long Island in the green that says Long Beach.

Montauk..keep going east with with your eyes… keep going… keep going… don’t stop going. It’s that last dot. 

We arrived on Monday at Hither Hills state park on a perfect day, but as someone that has never been to a camp site and definitely not one at the beach, I felt like a kid all over again. In my heart and mind I knew we would be sleeping in tents and people would have campers everywhere, but I couldn’t actually process that until it was all around me. What do you mean there are communal bathrooms and showers? Did you say we are lucky if we get hot water? And we sleep in tents?Hither-Hills-State-Park-864x400_cNow, it was clear to me from the start that this was not glamping (glamorous camping), but I was excited for a chance to try something out of my comfort zone. I should also mention that Beth’s family and family friends were there as well, and her mother is by far the most organized and prepared human I have ever met. Hands down. They had everything from the practical camping necessities like bug spray, sun block, and water to the fun things like board games for night time. Hell, Franny even organized costume and theme nights with prizes. Sure, we got rained out for country western night and raccoons may have eaten the ribs, but this woman is prepared.

What to expect if you camp in Montauk?

Monday: We arrived to sunshine and immediately hit the beach for some volleyball. When the weather got cooler and the sun began to set, we traveled as a group to Montauket restaurant to enjoy the sunset.

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We headed back to the camp site to prepare dinner- delicious fajitas, and play Family Feud. We spent the night hanging out, drinking beer, and laughing. As we called it a night and walked back to our tent, I said to John: wouldn’t this be the perfect place for a horror movie? Which led to an over-analysis of every branch hitting the tent from that point forward.

Tuesday: The next morning we woke up to rain- Forrest Gump style, torrential, upside down and sideways, rain. When life hands you rain, go to a winery. Fun fact: Long Island hosts some great wineries out east. I donned a bright yellow poncho that said “FREE PONCHO!” We arrived at Wolffer Estate Vineyard ready to enjoy some classiness. I sashayed in, looking like a sexy ass wack job in a poncho. It was a moment that felt like the music stopped and everyone stared at us. Because damn did I feel poor.

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What I’m trying to say: There were a lot of boat shoes and gingham shirts. I quietly took off my poncho and secretly wished that I had just thrown out my three year old, pilling, Forever 21 t-shirt. Because, Talia, you cannot be forever 21. Let it go. We ordered wine and cheese plates and pretended to know the difference between an oak barrel and fermentation and enjoyed ourselves. I would be a good rich person- so, let’s get on that.

By the time we arrived back to the campsite the weather had started to die down. Suffice to say, country western night was a no go. The overalls I bought that random day for no reason were still of no use to me, but we ate the works- minus the ribs… damn raccoons. We spent the rest of the night inventing a new game and ultimately heading to a restaurant to play trivia where we enjoyed screaming at anyone we thought was cheating by using their cellphones. We did not win trivia.

Wednesday: On our final day on the campsite we took a mini tour guided by Beth. We stopped at Ditch Plains so my friend Mark could go surfing, we checked out the famous Montauk light house, and stopped through town. When we got back to the campsite we enjoyed our last hours on the beach. some surfing (not me), others lounging (me).

I could get used to camping. I could also enjoy glamping. And being wealthy. So if you or a friend know anyone that would like to adopt me, my number is 1-800-555-5555.

** glamping: glamping

Dirty Girl

I’m at a summer block party when all of the sudden I notice my arms look dirty- as in, do you wash yourself properly dirty. The answer is, yes, yes I do. It must be fairly obvious that I’m checking myself out because a girl that I just met confirmed that yes, they do look dirty, but she would like to add that she doesn’t think I’m a dirty person or anything. Why, thank you? It’s always good to know that you can have marks on your body that look like filth but your outward appearance is still clean enough that strangers will give you the benefit of the doubt that you do take showers.

I thought these marks were weird and I guess I have noticed these dark patches that creep onto my arms and face every year, yet somehow I have pushed them into a place where I acknowledge them, but don’t think too much of it. Oh yeah, I get it on my face too. A big ol’ mark that only comes out in photographs that spans across my forehead, and a nice little mustache line which I don’t like telling people about because then they will stare at it the next time they see me. Just tell me you are doing it first so I don’t feel self-conscious, please. What’s odd is that I have noticed these things, but seriously displace their existence. In fact, I thought I was just really bad at bronzer for a while and would try to even out my forehead. This post is getting more moronic the longer I write…

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Don’t let the dark mark on my forehead confuse you for Harry Potter.

In the shower I have tried scrubbing my arms- I bought a painful loofah because of this situation. This is not a joke! I would scrub and scrub to no avail thinking that maybe I needed to stop buying CVS brand sunblock and take it up a notch to Banana Boat. Fast forward to this morning. I am perusing the internet and stumble across a blog entry from butudontlooksick. It’s my lupus! I know House says it’s always lupus, but Talia says: Nah, it’s probably just dirt. 

So it’s not that I trust everything that I read on the internet, a la this chick:dcc6c074569bd39866f43364a26ff021571f79c8b2fc1846135f598b850fab2d5cd9bdd28650fc93bc22bee882c69621

But I do love myself some WebMD. If it wasn’t for multiple rheumatologists confirming that I have lupus, I most definitely would have self diagnosed myself with something incurable and insane…like lupus. Either way, today I allowed the internet to confirm my derm (as in epidermis). The “dirt” is actually skin pigmentation from the sun. Not muck, filth, grime, or grub. Then again, maybe I should go to the doctor and have them corroborate my self-diagnosis from a blog post with a visit. Or, maybe I am just dirty.