No one can do what I do

Today I was on a video chat with my dad and he said something that has really stayed with me.
We were talking about my disease, “the gift that keeps on giving”, and how despite the odds I’m always optimistic.

Yesterday I got out of the hospital again. It was my second hospital stay in two months, not a great average for someone like me.
In September I was in the hospital for six days, with an esophagus complication that was never really resolved. In those six days I developed a cold that I still have, and blood clots in my arm from a perforated vein via IV insertion.
The cold is annoying yes, but the blood clots ended up being a real shit. I had plans to go to a friends wedding in California, just a few weeks later, which ended up not happening.
My dad has planned to pay for my tickets but the clots caused him unease and he reneged on our deal. (I later found out I couldn’t have gone anyways due to not being able to fly with clots in my arm.) Unseen problems that turned into a big mess. Fairly sure I lost a friend or two over it. The ongoing cost of a disease I didn’t ask for.

Early Monday morning I woke up with a sharp pain in my right thigh. It was a confusing place for pain in my body to be, as it wasn’t near a joint. Rheumatoid Arthritis attacks the flesh around your joints, but this felt like someone was slowly sawing off my thigh bone.
When the pain became unbearable I took myself back to the Emergency Department. This time, unbeknownst to me, I had a clot in my leg. A very large one, deep in my thigh, known as Deep Vein Thrombosis (DVT). This was a serious matter as if the clot broke it could travel to my lungs or brain and I could die instantly.
After many tests and overnight observation, it was concluded that I must take twelve days of self injections in the belly (ouch!), followed by three months of blood thinners. No flying for me anytime soon..

Now out of the hospital, and limping around on a cane, I’m packing up my room to move this weekend. An unfortunate overlap in my current reality. I took a break and called my Dad on What’s App to check in and update him on my status.
After I told him about my hospital stay, the medication options available, and my recovery time, he looked stricken. I told him not to worry, I’d dealt with bad before, I could do it again.
He said “You’re right. No one else could do what you do.”

Huh..

That statement has really stayed with me.
“No one else could do what you do.”

It reminds me of a conversation I had with my partner the other day about ‘reality’. (We’d been watching American Gods, a show about the unknown of our world, and the idea of creating your own reality, your own fate.) I asked him if that were true, then why would I create a reality in which I was always in pain? Seemed a bit strange for someone to want to go through that on purpose.
It was an odd show to be honest….

That conversation stays with me too. Coupled with the notion of “no one could do that but you”, I’m left wondering.

People have told me before that they didn’t know how I could get through the things I have. Didn’t know how I coped with the pain, the depression, the unknown fate of someone with an incurable disease.
And I think about it too.
I think about it a lot.

When I was a kid I was such a wimp. Paper cuts would end in tears, a scraped knee would be the end of the world. I couldn’t lift weights like others in high school during PE. I wasn’t a very physical person at all.

Now it’s been almost six years that I have lived through pain that most couldn’t conceive. Bearable pain that I live with daily would send most people to the Emergency Department. I live with things that I never imagined I would have to. I’ve been in hospital more times than I can count. I’ve experienced heart attacks, survived lymphoma, survived cervical cancer, and broken several bones from hugs.
I live with Rheumatoid Disease, Osteoporosis, Fibromyalgia, Lung Disease, and Lupus, daily.

“No one else could do what you do.”

Maybe he is right. Maybe they all are.
I may not have been ‘born for this’, but I live with it on a level that many could never conceive.
Because they will never see it on my face. I wear my Disease like a smile on my face. I stay optimistic, I stay positive. Because I have to.

No one else can do what I do.

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little by little

I was looking through #quotestoliveby on Instagram tonight and came across three small words.

“little by little”

I’m sure that this is probably a mantra for many, as it could encompass so many aspects of life. It might have been written to encourage people to strive for their goals, to not give up. Maybe to save their pennies, and go for that dream vacation. Or keep chipping away at their education, until they’ve succeeded in their dreams.

I used to love seeing quotes like this. I’d save them to my quotes board on Pinterest. I even contemplated getting some of them as tattoos, so powerful a message they were, I wanted them as a permanent reminder.

But tonight I see these words and they don’t speak to me as they once might have. I see “little by little” as a reminder of my mortality. I see it as my disease chipping away slowly at my body from the inside out.

Little by little my bones grow brittle and break more often.

Little by little my fatigue consumes me to where I wonder if I can get out of bed again.

Little by little my hair falls to the floor.

Little by little the drugs fail and I wonder what will be next if I’ve already tried everything.

A lot of people have commented on how strong I am about my disease, how in control I seem, how optimistic. They don’t realise that this is the mask I must wear, my uniform. Because if I share how scary it is to not know when the end is, then I’m being “dramatic” or “looking for attention”. No one wants to hear when the chronically ill are suffering. It’s a nuisance, something that should be kept to themselves. So we do. We keep it in. We become experts at the “I’m ok”.

But there are days like today, moments where the gravity of everything collapses our resolve. It might be a song on the radio, or a comment someone made at dinner, or that moment when we look in the mirror while washing our hands. Everything we hide from everyone, including ourselves, shatters. We remember what we are going through and how bad it is.

So tonight, when I read those three words, I remembered that little by little my body is dying. And that just sucks.

Why can’t I have the cheesecake I ordered??

This is my first post in a few months… Mostly because my life really hasn’t been that exciting. Life with chronic illness gets like that sometimes. Our pain rises and wanes, we go through slow, inactive periods, etc.

Since its been awhile, you may be expecting a typical rant of hating the healthcare system, wishing doctors had better bedside manner, or the unending disbelief at how people treat the disabled. But, this is not the fruit I bear today. Today I want to talk about false advertising.

Now we may not realise it, but false advertising is EVERYWHERE. It takes a keen sense of snooping out the bullshit that the world is dishing out these days. Not just on that $236 eye cream made from expensive japanese fungus that ensures you’ll look like a 12 year old if you use it everyday for 3 months, cause anyone who falls for that is just asking to be scammed.

How about those medical commercials that tell us if we use this new biologic we too can look like the model they hired for the commercial, hiking up Everest like it’s nothing. I know Big Pharma is trying to sell some drugs, but come on. I’d like to be sent the file of every woman who took chemotherapy for a year and then decided to be a cross fit instructor because she’s cured.

I know I’ve covered this before, but recently I dealt with false advertisement, and it all came rushing back. I was at a restaurant this past Monday, and was perusing the dessert menu when I got excited. It said they had “American Cheesecake”.

Now this may not seem like a big deal to most, but I live in New Zealand now, where “real cheesecake” doesn’t exist. They make the unbaked version here which is more like a mousse. Im not saying that’s a bad thing, it’s just not MY thing. I love baked cheesecake. It’s firm, creamy, and always has a delicious buttery crust. So, when I saw American Cheesecake on this menu I was stoked. Of course I ordered it. It arrives….

(Insert exasperated sigh here)

WHY YOU LIE TO ME MENU???!!

What appeared on the plate in front of me could maybe have been identified as flan… but we would really be pushing it.

•No crust.

•Weird custard texture that tastes and feels reminiscent of hospital grade pudding.

•Very odd gelatinous layer on top that tastes like melted Lego

I was OUTRAGED. If they wanted a creative and inviting name they could have gone with anything. Why lie to me and say American Cheesecake??? Just say ” this is our version of what smelly gym clothes and a pudding cup would taste like if they had a baby”.

FYI- I think one of the worse disappointments in the world is ordering a dessert and it ending up being awful. This coming from someone who lives with chronic illness daily. You don’t mess with dessert.

RAGE!!

Four days later, I’m still stewing about it, AND I still haven’t had any goddamn CHEESECAKE!!

Hmm, I guess this did end up as a rant after all…

Here’s the thing… I’ve been sick for 5+ years. I’ve gone through things with my body that most couldn’t possibly imagine. There have been months where getting out of bed was akin to willingly cutting my own leg off with a chainsaw. I’ve worked at a desk when most would have been in an emergency room. When you become chronically ill, you learn to live at a level most would deem insane and impossible. We do it because we must. Or we wouldn’t be alive at all. So…

Moral of the story:

Don’t falsely advertise to the chronically ill. We don’t always have much to look forward to in daily life, so don’t make it worse lying to us!

I am whole

My mother was a child of the 50’s, and raised by her mother with certain ideals in her head. She passed most of these on to me, and I followed them with diligence, all except one. In the 50’s women were raised to look for a man to support them in life. Someone who would marry them, have children with them, and basically be their “other half”.

I could not follow in my mother footsteps here. I never thought I needed a man (or anyone) to complete me. I didn’t need to find my other half because I wasn’t a half. I was whole. I only hoped that one day I would find someone(s) who valued me for my wholeness and accepted me, including my flaws and everything that made me the whole person I was.

There have been many that have come and gone. I have also spent many years wondering if I could even hope to find someone(s) to accept parts of me, let alone the whole of me.

I’ve come to realize that we as humans seek perfection where it doesn’t exist. We look for the counterparts of ourselves even when we swear we don’t need or want them. We want our partners to be an ideal that doesn’t exist. And yet we push our way through relationships intent on getting what we want, despite our unrealistic expectations.

Perhaps in this next chapter of my life I will remember that perfection does not exist. I will remember that we can’t have our cake and eat it too. And that compromise doesn’t mean sacrificing who you are.

I will remember what I am worth. I don’t need to find my feet, because I’m already standing. I will remember that giving someone my heart doesn’t mean they will accept it, and that that’s ok. I will remember that I am beautiful. I will remember that I am strong. I will remember that I am a whole person.

The Choice

When I was eleven my mom and I were living in New Zealand, her native country. It was definitely a lot different growing up than growing up in Hawaii, an island chain that didn’t experienced the four seasons like most. Hawaii didn’t change into shades of autumn, there were no piles of fallen leaves in gold, auburn, and burnt orange. The worst winter I experienced was just hard rain that brought on humidity that only those living in the tropics would understand.

When we moved to New Zealand following her finalized divorce to my dad, my mom cautioned it would be colder, but it never felt that cold to me. I bundled up in sweaters for winter, and donned a rain coat in spring, but that was more for comfort than anything. I didn’t realize the temp change until dipping in the ocean for the first time. The South Pacific Ocean was much colder than the tropical climates I was used to. I could never get used to the icy feeling. Those who lived in New Zealand were of course used to it, stating that in the summer it was warm. But their idea of warm was my idea of Hawaii on its coldest winter day, when most wouldn’t jump in.

However, I was a born water baby. I have many photos of me as a small child, and I’m always playing next to a body of water. The Scorpio in me could never get enough, I was a water sign through and through. As soon as I was old enough my mom put me in swim school and I took to it like a fish. I won swim meets left and right, and excelled at anything water related.

So, when I was eleven we visited a famous Auckland region beach called Piha, located on the west coast. Piha was known for its good surfing, even boasting a surf club. It was a black sand beach as well, which I’d only ever experienced one other time before, and loved the novelty of it. Piha was also known for its strong currents and rip tides. So well known in fact that there were safety zones in which you could only swim between two marked flags, and lifeguards on duty to rein in swimmers or surfers who’d been dragged out by the fierce pull of the ocean.

On that fateful day back when I was eleven, we had been driving around with my moms boyfriend at the time and I had brought a friend along with me.

Rae was a schoolmate whom was certainly not my favorite friend, but was the one available to hang out that day. While we got along just fine, I had always sensed a bit of resentment from her (yes even at 12 I could see it). She was an only child as well, from a single parent household, but was raised by a father and not a mother. I often wondered if she envied my close relationship with my mother, and had noticed quite a bit of competitiveness.

We weren’t beach ready, and lacked swimwear, but we did have a couple towels on hand and Rae and I begged to go for a dip. Looking back now, the t-shirt and shorts combination I was wearing was definitely not the best swimwear for a beach like that. However I was eager to be in water again, and despite the chilling cold of the icy South Pacific, I jumped right in.

That day I learned a valuable lesson that has stayed with me for a long time. Rae and I unfortunately got caught in the rip tide that day, and we were pulled quite far out. We knew we were in trouble but started to make the slow and steady swim back in. After what seemed like forever, a lifeguard boat came out looking for people in distress. Rae was closer and I shouted at her to get his attention. Luckily he saw her straight away and picked her up. I waved at her to have him pick me up too, but she did something that has stayed with me for these twenty five years. She looked right at me and then turned her head, and motioned she wanted to go back in, knowing that I needed help but denying it to me. In that moment she couldn’t look past her resentment or whatever she felt deep in her soul, and made the choice to leave me in the sea.

I understand that at eleven perhaps she didn’t know what she was choosing, that she might not have had the capacity to realize my life was in her hands. Though I certainly had the capacity to know and realize if I wanted saving I would have to do it myself.

I don’t know how long it took me, but I slowly and methodically swam in. My water laden shorts and shirt did nothing to help my struggle, and I’d never realized until that moment how very streamlined my swim team uniform was. I thanked the universe that I was a swimmer and that perhaps I’d always trained for this moment, when my skill would be needed most. I finally made it back in and back to my mom, her parter, and Rae. I glared at Rae but said nothing to her, it wasn’t necessary, we both knew what she did. And after that day I didn’t spend any more time with her outside of school. I knew a bad apple when I saw one.

I have thought of that day many times. I’ve mulled it over in my head, picked it apart, tried to understand how and why. But the conclusion I’ve always come to is that we just can’t know what’s in the heads of others. We can’t know their demons, as much as they can’t know ours. Did she want me to drown? Probably not. Did she want me to suffer? Maybe. It’s not worth thinking about too hard.

Last week, I returned to Piha Beach for the first time since I was eleven. Twenty five years of fearing those strong currents, and in a way fearing the death that I could have met had I not been strong enough. I sat and let my feet squish in the black sand, watching the distant waves before me. It was then that everything started to make sense. I had an epiphany.

About a week ago I saw a post I liked on a chronic pain page that I follow on Facebook. It said..

“I often ask myself, why me? Why must everyday be a pain day? But then I ask myself – why not me. I would not wish this on anyone else and perhaps the universe gave me this because I can handle it better.”

Now when I first saw that I scoffed at it. I mean the universe sucks in picking people if that’s the case. I’d prefer a different present thank you very much.

But when I was at the beach, I started to think about it. And then I got back in the water after having being scared of its currents for almost three decades. The currents were really strong and I had to fight to keep between the swimming flags. There were moments where I wondered if I should pick my feet up and see how far it swept me away. It was then that the universe reached down and gave me a revelation that has taken my lifetime to conceive.

On that day, when I was eleven, I could have certainly drowned if I gave up. I was tired, my legs and arms ached at the weight of the water against me. I could have let go and let the sea swallow me. But I didn’t, because I knew I could make it. I knew it would hurt and it would be exhausting, but that I’d make it if I wanted to live.

Since I got sick, and then sicker, and then sicker, I have cursed the world for giving me this when there are healthy serial killers that walk the streets. Cursed the universe for giving me this pain and heartache when there are billions that live without it. But just like that moment in the ocean all those years ago, I was given a choice. There have been so many times that my disease has almost won. I’ve been hospitalized, been in cardiac arrest, I’ve blacked out because the pain almost consumed me. But I’ve always chosen to wake and deal with it. There have been times where I know my body would have given up if I let it. A moment in a hospital bed after I blacked out from arrest, a moment where I saw dark and light and knew I could choose a different path.

I chose to live. And sure, I don’t want to be sick. I hate my disease and the fact that I never get well despite the handfuls of pills they make me take, and the chemicals they pump into my IV. But I’m still alive, and I wouldn’t wish this on anyone, even that girl so long ago that turned her back on me. Maybe the universe did give this to me because it knew I could handle it. That I wouldn’t let it defeat me. Maybe that’s what it means to be alive. Having something to fight for, living for more than just the 9 to 5, and the mortgage payments, and the white picket fence. Sure, a lot of people have it better than me, physically, mentally, and financially. But maybe I’m different because I’ve looked into the darkness and turned away.

I’m alive not because my heart still pumps. I’m alive because I choose to be. I’m severely ill, dying slowly from incurable diseases. But I feel more alive because I know how fragile I am. I’ve looked into the darkness a few times now, and I’ve said no to its painless quiet. I’d rather live with this than not at all.

Now Piha Beach can be a memory of the first time I chose to be stronger than you could ever imagine. And choosing is beautiful.

Mulling Over A Dream

It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.

Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.

My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.

So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…

The last memory of my other life.

The life I had before this was all I knew.

A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.

Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.

It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.

I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.

But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.

We’ve still got time

For the last two years I’ve lived on a clock.

A clock that has been ticking away the moments to where I meet my end. My illness eating away parts of me that are unseen.

Because of this I’ve adjusted to a “come what may” attitude towards life. I’ve been living free and fearless, feeling that this was the only way for me to live my life to the fullest.

But I have recently come to realize that this may not work for my anymore. I can no longer live in the shadow of my disease.

I have people I care about and friends whom are important to me. The ‘come what may’ philosophy only worked for me when I had nothing to live for and therefore had no fear of what happened to me.

This is no longer an accurate representation of my life.

Maybe it’s that 2018 is in quick approach and it makes us all think about what is important in our lives.

Love. Family. Friendship. Truth. Fun. Happiness.

No I don’t suddenly fear death or the end of my being, despite that always lurking.

No, I don’t fear the clock of life.

I fear the loss of the important things.

People go through their entire lives not being truthful to themselves and others. Life is short, no matter what time clock we are all on. Cherish the time that is given. Share your feelings. Tell your friends they are important to you. Tell your loves what they mean to you.

Instead of being fearless, respect the time you’re given and use it wisely. It’s not to late to be truthful to who you are.