4 Things I’m bad at.

  1. Waking up before 6:00 a.m.
    1. 6:01 a.m. with the smell of coffee brewing and I’m unstoppable.
  2. Saying “no” to:
    1. Food of any kind. Don’t put it near me, I will devour it all. Sayonara honey mustard and onion pretzels. Hello stinky breath.
    2. Work, in any capacity.
    3. Friends. I just love their faces so much that I tend to forget about the fact that occasionally the energy is lacking and grandma needs some sleep.
  3. Saying “yes” to
    1. Me time- Getting my nails done, treating myself in any capacity. I have fallen off the damn rails in 2017.
    2. My mom- Hi! I love you- I’m still here. Keep checking my blog for updates. Kidding- we talk every day, but seeing your mom is always something special. Time should always be made for family.
  4. Putting my sneakers on.
    1. Unrelated to the fact that I choose bunny ears as my main source of lace tying.

And it’s not that I’m worse than most- The challenge I associate with making multiple trips to the car, the whimsical voice that sings in my ear and says, “you’re being good…it’s froyo- add the brownies and the snickers. ADD THEM!” These are the feels that internet memes find their base in.

This is why I understand the struggle for many when it comes to making the best choices for ourselves. Because I’m no better at making them for myself- despite having a blog in which I advocate for being a better version of myself. Because on some days I am, but on some days I’m not, and on many days I’m just trying to put my sneakers on. Or I’m pretending like I can’t find them. Even though they are clearly on a shoe rack in my closest.

We are all the same. Hoomans!

And finally, it’s not that I’m only bad at 4 things. I’m just bad at making a list that exceeds 4 points. The type-A person in me is suffering over the fact that I couldn’t muster a fifth point. But here’s where I’m at my fellow humans- let’s cut ourselves a break. Let’s pat ourselves on our back for our efforts. Let’s get better at saying “no” when it’s right, and stronger at saying “yes” when it’s essential. Yes?

Peace and Love xx

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Inflamed but Unashamed (spoiler alert)

Urgent family text message: help, I want to do the Lupus walk on May 6, but we need a team name. And a team. I can always count on my brother to be simultaneously creative and offensive and with that, I braced for the worst. Then, I prepared to laugh. I firmly believe that when it comes to auto-immunes, you have to find the humor when it presents itself. Which is rarely to never, because diseases sort of suck.

Soon, the ideas rolled in and my brother didn’t let me down:

  1. The Autoimmune Police
  2. Looping Laps for Lupus
  3. You can Lupus, but you Can’t Coop Us!
  4. Grabbing Life by the Lupussy

I may have been the executor of one of those genius ideas, but a lady never reveals her secrets. The fourth, I wrote the fourth. Ultimately I settled on the one I identified with second most, and… we had a winner!

:::drumroll please:::

Inflamed but Unashamed

And with that, I welcome myself back to a few of the things that make me, me.

Back to the world of running.

Back to the world of writing.

Back to the world of advocating.

I missed you.

 

Moms Being Moms

Mom-isms never stop. You may even find that you will forever be your parents child as they send your reminder text messages. See exhibit A:

When I was sixteen my mother was my biggest health advocate. Each doctors appointment scheduled, fax that needed to be sent, blood work that I had to be taken to, and piece of knowledge about nearly every auto-immune under the sun became her mission. She was unstoppable.

As a teenager, I found myself a passive recipient of a present I did not want. As a result,  I allowed my mom to absorb the brunt of the information. Over time I learned that passivity and health do not go hand in hand. As I began to advocate for myself both legally as an adult and because it became important to me that I become more aware of my health, my mom gave me the reins

Her mom-isms did not vanish overnight as I would still receive the occasional: when do you see your lupus doctor? But for every mommmmmm that my young adult self groaned, there was the reminder that she saved my life.

This afternoon as I read her texts, I caught myself laughing. It took me too long to register that she was genuinely concerned. Mom’s right, she cannot make the appointments for me, but I can make them for myself.

I wonder how many of us did not receive a proper diagnosis or help because they lacked support where they needed it most- home. At 28 I’m still being scolded about my health, but I’m appreciative that someone can love me so much that they are willing to drive me crazy.

Don’t worry, I’ll get you back.

 

Wait, you weren’t invited?

That must have been why I didn’t see you there. Not that too many people were there. Or anyone for that matter. It was actually just a party for one- THE Pity Party of 2016.

I would say that it was better than the Pity Party of 2015 and definitely better than the 2014 Party of Pity. Not quite as good as the one back in 2004, but I’m not sure any of them can beat that banger.

I would even say that I’m not sure if this year’s fiesta has come to an end. It’s kind of like when you are a kid and your birthday manifests itself into your birthmonth. Granted, birthdays are much more rousing than lupus and also contain a considerable amount less self-loathing.

Pity-parties are boring. Stale. Monotonous. Lonely. And I’ve been trying to end the soiree. But I want you to know that having a disease can feel a bit like quicksand in that the more you struggle, the more quickly you become in engulfed in the weight surrounding you. And if you ever are trapped in quicksand, check whether or not you are being weighed down by heavy items. If you are, release them.

Disease can make you miss yourself and ask questions like, where did she go? They can make you forget that you have accomplishments. That you are a fighter. That you have a sense of humor. They can make you forget that you are deeply loved.

Have you ever woken up after an ongoing sinus infection with a clear nose? You probably sat back and thought to yourself – nose, I will never take you for granted again. I love breathing and I will never forget this beautiful moment of nose clarity.

Years ago I started this blog as a reminder to myself to value both the grandeur and simplicity of life. The moment I realized how fortunate I was for my health and that I had the ability to challenge myself mentally, physically, and emotionally.

I hope you are never so unfortunate that you find yourself stuck in quicksand, but if you are take this advice:  if you simply relax, the sinking will cease.

 

 

The Breakup

The phone rang twice. A feeling of dejection resonates as I hold the phone to my ear. This wasn’t the only time they have made my life more complicated than it has to be. Tears well up in my eyes as I hang up the phone, shaking in frustration. It’s the first rheumatologist that I’ve broken up with. The others were simple – one retirement, the distance was too far with another – I guess I thought this guy was the one.

Strike 1: non returned phone calls

Strike 2: thrown out paper work by clerical staff because they didn’t think my blood work from another doctor was “relevant” to my lupus

And you’re out: As I try to schedule an emergency appointment mid-flare, I hold a conversation that borders on comical:

Wait, who is this?

Talia …

I heard you and you said your name starts with “R – U”

OK, well, my name is T-A….

Well, what do you want us to do? Should we forward your blood work script to Quest (Quest is where I get my blood work done)?

Yes, I would really appreciate that!

Well, I don’t know the number. So I don’t know what to tell you.

Do you want me to look up the fax number for you? I’m also happy to pick it up or take it somewhere else.

Oh, also, your appointment has to be cancelled for Monday. We are changing office hours.

I could feel my blood rolling into a slow boil, my ears becoming warm to the touch. In fact, the following sequence truly resonates with my emotions:

😒😖😤😠😡

Granted, I’m not the most patient or even keeled person, but I had this sensation that moved me to feel like I deserved better. It was upon being informed that my appointment which is less than a week away had been cancelled without anyone calling to give me the slightest notice and that I would now have to reschedule during my workday. Their office hours are changing. Resurfacing in my mind were other times I felt slighted by their office staff, as though my health was an annoyance to their day.

I felt the words slip off my tongue before my brain had any input. And while I don’t regret my choice, this wasn’t the me that I know.

It seems as though this isn’t working out anymore. It looks like I’m going to have to find someone new.

Not like me because I have a complex and despise feeling like I disappointed someone. Go ahead, psychoanalyze me. How far has that gotten me in life? Not far at all. Which is why I’m coming to terms with the fact that not everyone will like me, in fact, I’m fairly certain plenty do not. But that’s okay because I was always told that the older you get, the less you care, and that is certainly true. Not to say I don’t care at all about what people think or I’d quit shaving my legs right…about… now. But as I said, I do care. So for me, ending this relationship with my doctor was not a simple task.

Would I allow a friend treat me like this? A significant other? A family member? Co-worker? Stranger? Anyone. No. No. No. No. No. No. 

And there I was – my face turning red, a fiery sensation burning from somewhere deep within. Everything in me that cared about what these people though about me vanished as I was reminded that the only thing that matters at the end of all of this is my health.

So after a six year relationship, my rheumatologist and I are broken up. And call it quick, but I’ve moved on. If anyone asks, it ended because I know that I deserve to be treated well.

Here’s the thing though, I will break my own new rule and tolerate being treated like a second class citizen by one doctor: The veterinarian. Frankly, she connects much better with animals than people and I only request that she is kind to my dog.

tilly

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:

the-obliteration-room

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?

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.

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

Treat yo’ self 2015

If you are a follower of my blog, you may know I believe in a little sumtin’sumtin’ called Treat yo’self (I even wrote a blog post dedicated to it- click me!). I wholeheartedly prescribe to this philosophy. However, since my engagement, I have had a looming feeling of must not spend any money – this in not Johns doing at all. It’s my own psychosis. In fact, on a recent trip to the mall I pondered aloud whether or not I should invest in a laptop. Well, I love to write… it would make me more committed and accountable of my writing and taking care of my health… it is and investment… totally worth it.

At that very moment, John blurted out: Treat yo’ self!

Me: So you think I should do it too…? 

John: Do what?

Me: Treat my… buy myself the laptop?

John: I was just reading that ad for cupcakes…[pointing to an advertisement for cupcakes]

Take it as you will, but I took it as a sign from above. Literally, the sign was above my head. I bought myself a beautiful new macbook air, and I love her. Compliments of Apple, I also received new headphones for free. I know, Alanis… it’s a free ride when you’ve already paid. Whatever. Teachers and students, listen up, we get perks! Naturally I chose the hot pink Beats, because who doesn’t love looking like a clown while jogging.

I am a firm believer that if you don’t want to use your brand new things immediately, you don’t truly love it. If you don’t go shopping and try to figure out a way you can wear all of your new clothes within that day, return them. You hate them. I have been dying to use my beats, but I also made a promise to myself that I would wait to run until after Bikram. Lemmetellyou, they are ear pillows. And adorable ear pillows at that.

I just had a beautiful run, avoiding the boardwalk for the day, I took to the side streets. Granted, I was almost hit by three cars, but the Beats made up for it. My ears just took a siesta on their ear pillows, and I’m a happy chick drinking some Arnold Palmer (lemonade and iced tea for you plebeians) on my porch. Also, feel free to admire the garden growing behind me. What garden you ask? Yes, John and I kill any living plant we come into contact with. Even the cactus.

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