Goody Goody

Change is change and takes adjustment, but I think I’m getting the hang of it. Things are picking up, settling in, taking off. It just feels like everything has fallen into place. True to myself I know how to recognize when things are good, and right now, things are good. And I love the weather.

The pain is still here but I’m taking care of myself. The sadness is still here, but there’s satisfaction to combat it. The loneliness is still here, but it has less of a sting to it.

I feel happy again. I feel like I have more good moments than bad moments. I’m crying less. I’m doing more. I’m watching a lot of Gilmore Girls. I’m busy again. I’m seeing my friends more. Or rather, enjoying the time I spend with my friends more than before. I feel like I have what to say, I have what to share, and I have what to be proud of again. I’m interesting and complex and funny and lively. Again.

I wish I could sleep. I mean, it would be helpful, you know? But you can’t have everything. I like that even when it takes me hours to fall asleep, I don’t talk myself into a frenzy. I write stories in my mind like I used to when I was little.

I feel curiosity for the first time in a long time. Being out of school has reminded me that I love learning and I love knowledge, and it’s a joy that is precious. I like surveying the months since graduation in my mind and realizing I’m now out of the dip. I like my clothing and I like how I look. I like that I’m good at staying in touch with people. I like that I persevere. I like that my diary hasn’t been as depressing these past couple weeks.

I like that I’m starting a course soon where I’ll meet new people and make new friends. Winter romance? A possibility.

On that note,


Song Quote:

Little darling, the smiles returning to the faces. -Here Comes the Sun, The Beatles

At this point I refer you back to “An Ode to the Changing of the Clocks”, because it is once again how I feel and I’ve been pining to feel this way for months.

Sick But Beautiful – New Blog!

I started another blog… is my guilty confession. But altogether yay! Very exciting stuff!

A few months ago I had the idea to put up a series here called “Chronic Beauty”, where I would share all of the knowledge I’ve accumulated when it comes to being chronically ill and wanting to look nice without causing myself an ordeal of pain. As I plotted and planned I realized I had too much to say and due to the fact that a large portion this blog’s online community is male, I didn’t want to lead to alienation (not that I think you’d abandon me or anything, but you still might find beauty stuff irrelevant).

I came around to the idea of creating another blog devoted solely to beauty advice for those of us trying not to look sick every day. AND IT’S FINALLY A THING.

Welcome, ladies and gentlemen (if you wish), to Sick But Beautifula site where I plan to build a complete guide on “How To Fake Healthy”.

It’s a light and fluffy place, peppered with humor and puns (because why not) where I might actually manage the regular uploads premise. It’s not a forever thing, more of a “I’m going to write everything I know and get it up there in an organized fashion and then sit back and watch people learn and benefit from it” sort of thing.

Best part is, it’s making me happy. The blog in its entirety is a showcase of me taking sucky feelings and turning them into something positive that makes me feel good.

Sick and Sick of It will of course not be harmed in the process of writing Sick But Beautiful! I’ll just be writing on both of them now, and who knows, maybe Sick and Sick of It posts will get less depressing at some point. In any event, I’d like to ask you to head on over and check out the new blog, be loving, and share it with anyone who you think would enjoy it.

Much love to all,


Song Quote:

This is the start of something beautiful. -This, Ed Sheeran

I Wonder

Please give me a pass for sounding incredibly pathetic right now, but I have a mental catalog of really great hugs I’ve received. I suddenly thought of someone I haven’t seen in about a year who gave me a great hug the last time we saw each other. It was a lingering hand hug – you know, the kind where the hug is officially over but neither removes their hands quickly. It occurred to me that I might have written in my journal about that hug, so I started digging through my drawers and retrieving old diaries.

As I was looking through them, page by page, I was struck by how much I have changed and how little my life has. The entries from last year could be the ones from yesterday, and the ones from two years ago could be the ones I’ll write tomorrow. I write with more finesse, maybe, or a slight twang of additional maturity, but I’m still dealing with the same difficulties. No matter how I change, advance, grow or learn, I can’t get away from this pervasive problem of my life.

I never imagined I would graduate high school and be sick. I’ve accepted a lot and have a lot of accepting left to do, but nothing can alter the fact that I’m greatly displeased with what is happening in my life. The things I’ve been writing here for over two years, about how little control I have over what happens to me and how useless hopes seem to be, are as relevant as they’ve ever been.

Now don’t get me a wrong, I’m a pro at making the best of whatever situation I find myself in. I believe in seeing and appreciating the good as I live, and remind myself every day how important it is not to see good only in retrospect. Not to look back on a time in my life and see some good aspect of it that I didn’t realize was there at the time. So as I suffer and smile through it I make lists in my mind of everything that is good, and this helps me. Helps me some, but not quite enough. Not enough to cover the sadness.

The sadness. It runs deep, maybe through my veins or my nerves, maybe in my heart or in my soul. I prefer to be alone with it, to retreat at times and allow myself to feel it as it courses, because I have a lot to cry for. I have a lot to be thankful for, but also a lot to cry for. The pain is a constant that seems to stem from my very core and that makes no sense, but the sadness I understand from the inside out. It’s there in the silence and it resonates in music, it thrums in my ears as I walk and buzzes in front of my eyes as I sleep. It’s a part of me, an integral component in my days. I live with it and it lives in me. But I no longer wonder why.

I try to remember that maybe the fact that I can’t imagine my future means it is destined to be better than anything I ever could imagine. I read my diaries and see the process of becoming who I am right now, a person I genuinely like. I can’t put my finger on just when it happened, but I have become an adult. I think practically and reasonably about decisions in my life, and I spend so much of my time now thinking of what I’d like to do with it. What do I want to study? What shall my profession be? Where do I want to live? (How will I afford that?) Which is the ladder I would like to climb?

It’s a quick step to the spiral of anxiety, realizing no matter how I plan I cannot conquer this disease and cannot live to my fullest potential. I harbored a secret hope that after finishing high school I would start to feel better and that I’d slowly but surely rise out of the pain. But alas, I’m just as sick as I was before, and I need to start figuring out how to manage adulthood in my current state. This point in my life is about proving that even if I am sick, I can still be okay.

I remember my childhood so vividly. I remember crying and thinking that good tears should not go to waste, trying to find a parent in the house and show them my state to receive some extra hugs. The real world doesn’t dole out any extra hugs when I suffer. I no longer wonder why.

I am still, in my essence, happy. But I am still, in my reality, sad. I mourn for the things I cannot have, cannot do and cannot be. I mourn.

There’s doubt. Isn’t there always? I doubt that I will ever get better. I doubt that I will live to see a time of peace in the world. I doubt that… that…

Well, this leads us to a sore spot. I know I’m lovable, okay? I know that. It’s not one of the things I doubt. It’s just something that has yet to be proven. I feel so silly for writing this, but in a way I feel it should be recorded just the same as all my other feelings.

No one has taken an interest. I’m the last of my friends… I’ve never been asked out, never been kissed, never been the object of someone’s crush. And I know my time will come, that I just haven’t met the right person yet, and that we each have our own timelines. But it makes me wonder. I wonder: why hasn’t anyone taken an interest?

When will it be my time? My time to be healthy, my time to be loved, my time to be free…

I wonder and will continue to wonder, but one thing can be said for sure, and that is that time doesn’t stop. In this moment I am older than I have ever been before and the youngest I will ever be again, and that in itself is a beautiful thing. Maybe life won’t disappoint me.

I know we’ll be fine when we learn to love the ride.



Song Quote:

If I fell in love a thousand times, would it all make sense? –Sense, Tom Odell

Just Stop


Stop the onslaught of time and how it rushes through your fingers like the sand you scoop by the sea.

Stop the pressure of the future that you can’t figure out and how it weighs on your mind all the time.

Stop doubting that you can and will do incredible things with your life and your talents and your passion for everything you love.

Stop feeling so small. Stop crying in the middle of the night, gasping for breath on your blue carpet because your life is not what you imagined it would be. Stop letting the fear get the better of you.

Just stop.



Life is the ups and the downs as much as it is the benign. I would never choose not to feel all of this, because all of this is what it’s all about. As always, I thank you for the kind comments you leave. You don’t even know me, and yet you know my lowest moments. Life is a journey and I’ve found myself with you along for the ride, and that is truly a gift.




Song Quote:

We’ve got younger faces than our hearts are letting on. -Novels, Rusty Clanton (

The Endless Ands

And what about those nights when I don’t want to get up the next morning? When giving up is the easier option, because really, who would love me like this anyway?

And as I write these words I wait for the fight to kick in, for the anger to strike me and tell me not to believe that. But I wait like I wait for health: hopelessly.

And what if I’m tired of waiting?

And as I contemplate the bed I am getting into, I wonder about the bed I will wake up to. Will it have been slept in? Will I have spent another open-eyed night wishing the sun would rise more quickly and yet not rise at all?

And I have two arms. One I wrap around my body, tightly, because there is no one next to me to do it. One I keep free to wipe tears. The pain is too much.

And the fear is crippling. When health is but a fantasy, the future is but a question mark.

And I want to be hopeful. Sometimes it feels like I am winning, because I have a voice in my mind that tells me that right now is not really all that bad. Manageable. Definitely not the worst I’ve had. Perspective. You know the sort.

But there’s always a tonight, and I don’t want to get up in the morning.



Song Quote:

I got locked inside a sadness, I got lost inside my head, couldn’t find a light to make me glow. -Holes, Layla

Describe the Pain

You ask me how it feels.

How it feels?

Describe the pain.

The pain?

That I can’t.


It is a thin, gray substance that coats my entire body. It is elastic – it clings to every fold, crevice, dip and bulge. It is a glove, not a mitten, covering each of my fingers individually. It is a film around my eyeballs. It’s a thick platform beneath the soles of my feet. It is weaved within the hair that I chopped off. It is my outer layer of skin.

It is like a rubber band. If I focus, really hard, I can push it out – away from me – enough to let air in. If I push it really far, it lets hope in. But you must understand what being rubber means: it will always snap back. The minute you forget to focus on the light and hope, it smacks back, vacuuming itself to your body.

You can see through it, in the way that others don’t see it at all. You can see what you’re missing, but there isn’t a thing you can do about it. It is like walking with a heavy cloud above your head every day, except the cloud is not above you but within you.

It is as strong as I am. The harder I fight to be rid of it, the harder it fights to stay with me. Because it is me. It’s my brain, it’s my wiring, and it’s my nerves. It has my nerve.



Song Quote:

We’re tethered to the story we must tell. -Turning Page, Sleeping At Last

Remember the Truth

Isn’t it crazy that you write the truth and then forget how it feels? You believe in looking at things as beautiful, but you simply don’t remember to. Because bad monsters clout everything, because you can’t remember what it’s like to feel like yourself, because sadness is so overwhelming while happiness is so fleeting.

But yes. For the first time in forever, you feel like you’re going to be okay. And for even just a few days, you felt good. You existed under a new sky, you rediscovered what it is to hope, you felt optimistic about new opportunities and you felt worthy of love. You also believed in it.

A new sky... (Taken in Baveno, Italy, this summer)

A new sky…
(Taken in Baveno, Italy, this summer)

So relax. Take a deep breath. Tell your brain that everything is going to be okay. Sleep well. Dream happy.

Just live. Isn’t it beautiful seeing the magic?


Song Quote:

I just want to be ok today. –Be OK, Ingrid Michaelson

(The third in an unintentional trilogy… Some Truths, Actual Truth, Remember the Truth.)