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.

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!17097415_10102653851552172_6633664162230221689_o.jpg

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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.

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:

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?

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.

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…

10174792_10100264597007489_8319281553386916600_n

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.

Lupus Lately

One thing I haven’t touched on in a while: Lupus.

She’s been O.K., definitely been worse, but has also definitely been better. When I began this blog two summers ago, I had just received word from my rheumatologist that I was no longer in “remission*.” Since that time my blood tests have shown that my lupus is active, fortunately, I have remained relatively healthy. What people don’t understand is that lupus has such a broad impact on different people. For me, I take two pills a day of an anti-malarial called plaquenil. However, lupus is an auto-immune that can attack any organ in the body and the tissues of the body. It does this because the antibodies produced believe the internal organs are invaders that need to be kicked out- fight the good fight, lupus. Just stop fighting the wrong fight, you idiot!

Most recently I have been experiencing photosensitivity. This is typical during summer because it is a challenge to avoid the sun, especially in a beach town. The other day Jess and I were about to walk into yoga when she looked over at me with a concerned face “your skin!” She appeared so concerned that I ran into the bathroom to check what was wrong- oh, this old thing?! 

photo 3

This is my skin without makeup during an outbreak of the lupus “butterfly rash.” Whole face has been left out for protection of its owner. Those little red dots that look like pimples are part of the package, people- beauteous, I know. As a concerned with my appearance female, I try to cover it with makeup, but there is only so much that can be done.

photo 1

It is what it is. At times it’s an enormous frustration for me because who doesn’t want to be “normal.” News flash: it’s probably my fault that I have the facial rash in the first place. Scouts honor- I laid in the sun the other day. I’ve discussed this before, but sun is a trigger for lupus and can lead to flares. I’m supposed to wear sunscreen all of the time, even in winter, because of UV rays. For some people with lupus, even fluorescent lights can become a problem. I am completely aware that I’m not supposed to lay in the sun, but then why does it feel so delicious?! Request for whoever is operating the world, stop making bad things feel/taste/look so good, please?!

So yes, it angers me that I can’t do unhealthy things with my friends. What I come to every time I find myself hostile towards the world: it could be worse. It could be organ involvement, chemotherapy, premature death. So as horrible as a rash is, my skin is not the worst part of this disease. So I guess I will take what I can get. Life is turbulent and unpredictable- we create it, we can shape and alter it. That’s why I wear sunscreen and why I usually don’t lay in the sun- I protect my health. That’s why I take yoga, run, bike ride, and try to live an active life. I cannot escape lupus, but I can live the best life possible.

*remission for lupus: is not real. there is no cure. That’s me being bitter- In layman’s terms, it means you aren’t really showing symptoms of lupus.