Always check your toothpaste.

If it hasn’t been obvious, my health has been up in the air recently. After two months too long with hives, I found myself on a mission to figure out what was going on with me physically. Here’s the deal with lupus: everyone is going to tell you, well, it might be your lupus. But it also might not be your lupus. And as a result, you may find yourself equally, if not more confused than you were prior to investigating your health. Well, who doesn’t like a good mystery?

Off to the rheumatologist, I went and was told- well, it might be your lupus. But it also might not be your lupus. 

Off to the dermatologist, I went and was told- well, it might be your lupus. But it also might not be your lupus. This visit came complete with a brand new topical cream! This topical cream so closely resembled my toothpaste that I almost died when I thought it was my toothpaste.

not toothpaste.

Whoops.

But these visits weren’t enough and the hives have made themselves permanent residents, so I found myself at the allergist. If you have never gotten an allergy test, and this might be weird, they are oddly satisfying. Essentially, you get stuck up with a bunch of histamines and it’s a waiting game to see what “pops” up. I know, I’m weird. As I sat patiently in the waiting room, the itching slowly began. Naturally, I hoped my prayers would be answered as I begged to the bread gods, don’t let it be gluten, don’t let it be gluten. And while it wasn’t gluten, it was eggs. And rice. And mustard seed. And suddenly, it was as though the only food I urgently needed in order to survive was a mustard frittata over jasmine rice.

As much as this pains me to do, I’m going to be responsible and follow my allergist’s advice. For two weeks: switch my detergent, no more fabric softener, use skincare products that are less aggravating, and cut out the food I’m allergic to. Then reassess. Real talk, I’m not ready to say goodbye to eggs- is it wrong of me to refuse to give up on them? I just feel like they wouldn’t give up on me.

Finally, I checked the mail yesterday and found a cookbook for food allergies. It took some real PI work (a post on facebook) but I found out this anonymous gift was from my mom. Despite the curveballs, knowing I have love around me, even eggless love, makes up for it all. And here’s the best part of all for my husband, if there is one silver lining: I meal prepped the hell out of this week and this little lady is about to get crafty in the kitchen.

That being said, I will take any egg free suggestions and yummy recipes you are personally fond of. Please! Share away, my friends!

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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.

As 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.

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.

 

Say goodbye to my little friends…

The sneakers, not the pug. Another pair bite the dust- and have destroyed my arches in the process. Treat your feet well and they will carry you far!

The Note

I keep an ongoing note in my cellphone which tracks my runs. It traces more than the dates, times, and miles. Reading between the lines shows achievement, pride, and strength. It also bears witness to difficult days, or illness. And while I cannot pinpoint where or when it happened, I slowly lost my dedication to this journey.

My friends, the days of the three miler warmups are long gone. And is it just me, or is it hard to  swallow pride and realize you aren’t where you once were? Can’t I go Dorothy on this running thing, click my heels, and voila- run a 10k for fun?  Not because I must be a masochist? This ongoing list which once fulfilled a void began to claw its way into my ego, making me feel as though I failed myself. I scrolled back further, wallowing in my losses and I became transported to my past.

And then it happened. I was delivered to a place where the sun rose up and kissed the boardwalk as I ran my first mile. A place where I sat crying by myself not in sadness, but in awe. I cradled my knees against my chest as they moved rapidly up and down against the pressure of my breath. I listened to the deafening white noise of the ocean as it mixed with my inhalations and exhalations. Having grappled with chronic illness and its effects, I felt more alive in that moment than I had in years. I needed this.

Running was never easy for me. It was always a frustrating, exhilarating, endorphin releasing blessing. Being back to square one can only temporarily derail me. Plus, now I have a new note in my phone that says “5k Training: Times for One Mile.” I have given myself a goal, and it’s small, but it’s better than no goal at all. And yes, at my core I won’t lie and pretend I was not dispirited, but I’m less disappointed in myself now than when I felt like quitting altogether. Here I am, clocking in another one miler at 10:49.

Tomorrow I’m cracking 10:30.

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

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.