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.

Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

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.

One year ago 

One year ago, I was sitting in my favorite coffee shop with my mom, drinking delicious lattes from ceramic cups. Despite the intense summer heat in Hawaii, I was always in the mood for a Brue Bar latte. That day was extra special though, a significant moment in my medical history. It was the day I received my approval letters from Social Security. 

It had been just under two years since I had filed for federal disability. Two years, that to me, seemed like a lifetime. I still shudder at the thought of how broke I was during that time, how desolate. I lived with two sets of generous friends, who allowed me to stay in spare bedrooms for months on end as I waited. I lived on a very small state disability income of only $248 a month. That had to cover bills, medications, transportation, and incidentals. I became the queen of budgeting. Even my pain therapist said I could draw oil from rocks.

So, one year ago, when I received the letter telling me I was going to finally get enough money to live off, money that would help pay for rent, groceries, medical supplies, and more, I was quite overwhelmed. I cried, right there in the coffee shop, in front of my mom. My mom was probably the only person on the planet that understood the significance of these letters to me. She took a picture of me from across the table, one shaking hand holding the letter, the other wiping tears from my eyes. I was still very overweight from the continued steroid use at that point, and I was heavy in the face. It’s probably one of the most memorable and significant pictures of myself that I have. 

One year ago, I received Social Security benefits. A lot had changed since that day, and I’d like to think that it had to do with the positive effect this has all had on me. I’ve dropped a significant amount of the steroid weight, and I recognize myself in the mirror again. I’m in a new county where I’m finally getting really good medical help. My moods have changed, and I’m more often happy than not. 

One year ago I received a letter that would change my life. It did.

Don’t ever assume “I can” means “I will”


Inigo Montoya shared this line with us in the cult classic The Princess Bride, one of my favorite and also least favorite movies. You may wonder how someone can love and hate a movie at the same time, but it’s not much different than how we love and hate other parts of our lives… I love tomato soup but hate marinara sauce. I love the beach but hate the sand.

For me, this line is indicative of how I feel when people offer support or help, but don’t follow through on the promise. It’s in fact one of my biggest pet peeves. The best memory I have of this annoying occurrence is through the actions of a certain ex-boyfriend of mine. He would constantly make promises to me, and then never follow through. For example, on one Valentine’s Day, he told me that my gift was that he wanted to take me to this old black & white theatre in town that played old movies, kind of like an old fashioned romantic date night. I was overjoyed by this idea, reveling in the thought of how romantic my man was. I told all my friends about the lovely date he proposed, finding such satisfaction in the idea of my “gift”. But then time passed, and he never initiated the actual date he had told me about. This was when I first realized that he was one of those people that thought that stating the idea/plan/date was enough, and that initiation of said idea didn’t need to happen, so long as he felt generous enough for just offering. God, that got old real quick…

I actually use this irritating ploy as a way of gauging the authenticity of people I come across now. I no longer accept offers at face value, concluding that an offer isn’t real until followed through on. Alas, since falling ill four years ago, there is no offer made more than the promise of support. And this is where I want to invoke Inigo Montoya every time.

What exactly is your biggest pet peeve, you may ask? Hearing this:

“Please don’t ever hesitate to call me if you need help.”

“I could help drive you to the doctors office if you ever need.”

“Call me if you need help picking up groceries or running errands.”

There are more versions of these statements, but I think you get the picture. But they are always, always followed by “It’s no problem at all, I’m just glad I can help.”

Grumble grumble. 

Now I know what you’re thinking, “This girl is ungrateful. These people are just trying to help her, and she’s complaining.” Oh, if only that were true, but if it were, I wouldn’t be regaling you with this story now would I?

In the early days of my disease, I was always so grateful to hear these promises of support. They made me feel like I wasn’t alone, that I had so many people that I could count on. That is, until I attempted to collect on the offers…

Now at first, I thought I must always be catching people at the wrong time. That of course must have been the reason they turned me away. So I started to ask for help here and there when I thought the time was more convenient. But even then, my request to take people up on their initial offers of support, were often met with short responses in clipped agitated tones. Or even worse, comments dripping in disdain that sounded like they were answering a smelly homeless person, asking for an extra bucks change, as opposed to me, a friend they’d known for quite some time.

Like I said, it took me awhile…

Eventually I figured  it out, these people were just like my ex-boyfriend, and they fed hungrily on the feeling of being a benefactor from just the offering of help. For them, the offer alone was enough to make them feel like they had done a good deed. They’d offered someone in need their help, and that in turn made them feel generous and kind. Hurtling their karma in the right direction, and allowing them to feel philanthropic. But if the person in question turned around to collect on that offer, instantly they would feel annoyed and pressured, irritated that they would have to now make time to do something that they themselves offered in the first place. This annoyance that they felt entitled to feel, could then allow them to take a step back from the friendship. They could now tell themselves that they had been generous, and that it was being taken advantage of. While in reality, they hadn’t done anything but make themselves appear petty and untrustworthy.

Now I’m not saying all people are like this. I do have wonderfully supportive people in my life. People who have gone above and beyond to help me, to support me, to love me. I am eternally grateful for their kindness. Although, I do find it amusing that the most generous people are often not whom you might normally expect. But that’s okay. Their generosity and support make me realise more now than ever, that sometimes the family that chooses you, the ones that come from all walks of life, are the ones that make the most impact in yours.

But on the path of never ending life lessons, don’t ever assume “I can” means “I will”.