Sukhasana.

Sukhasana means simple seat or easy pose- how amazing is it? See. You can do yoga too. 

Truth be told- I haven’t practiced in months. Since it’s easier than having personal accountability, I’m going to place the blame on lupus.

Lupus got me down in the dumps- to keep this light. Lupus made me feel weak and it made me forget what brings me peace. When friends asked if I wanted to attend a yoga class, I said no. The reason? One thing that I know to be true about finding a dedication to yoga is that it forced me to reflect. Not going to yoga was for no better reason than the fact that I didn’t want to think about my feelings.

Depressed. It’s an icky word that we don’t like to talk about, but lupus will do that. Do I have your attention now? Why does that word provoke a genuine curiosity? Hearing that someone is depressed creates a mixture of equal parts fascination, equal parts pity. Recently, in a lupus group I’m a part of someone asked: Do you struggle with depression or anxiety? The discussion evolved into a chicken or egg conversation. Lupus will make you fatigued. Lupus will make you inexplicably weak. It will make you struggle to find the words to ask “where are my keys,” because your brain legitimately can’t string together a sentence. It causes physical pain. It requires sacrifice.

I couldn’t go to yoga and face this obstacle. I couldn’t face it by myself, I didn’t want to talk about it with others, and I sure as hell wasn’t about to breakdown on the mat. And then my friend invited me to her new yoga class. And I genuinely wanted to be there and present, not only for her but for myself. I craved what yoga provided me with for years- sheer joy.

photo 1.JPGAs I found myself back on the mat and laying in savasana I made deal with myself to continue my practice.

To keep this vow, this morning I pulled out my mat, got cozy on my floor, and stumbled upon Yoga With Adriene through her YouTube channel.

photo 3.JPG

Title: Day 1 Practice Ease. And as she spoke, and preached her mantra: find what feels good, I decided I can get behind this. Today I practiced for 30 minutes. It was slow, full of ease, and she left me with something I need to make my own mantra:

In yoga, we cultivate the good space. The more we practice moving this way on the mat, the more we will move this way off the mat. 

Having lupus requires daily effort, but it’s my fight and I don’t quit. Life is complex, but find yourself and your purpose within it – even if you get lost or distracted. Today, as I laid in savasana and found ease, I also found a piece of my heart that I misplaced along the way.

 

Advertisements

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

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

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:

white_room_stage_by_loveismymuse-d517wc6

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?

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):

Full Length Barre Workout at Home

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.