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?