Blog Archives

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.

Advertisements

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.

Our footprints

I recently ended a two week long road trip around the South Island of New Zealand. A trip that I never thought I’d be able to take at this point in my life.

At 36, I never thought I’d be struggling under the burden of multiple chronic illnesses. Never thought that I would live each day in pain and fatigue, wondering if or when it would all end. In March of 2016, one of the eleven doctors and specialists that I saw on a regular basis told me that I was living on a clock. A clock that no woman in her mid-thirties should have had to think about. A clock that was slowly counting down the time unto which my life would end. I had time, years in fact. But not decades, like most my age looked forward to. Ten years minimum, fifteen if I got lucky.

I took that news on my own, silently in his office, starting at my hands as if they were supposed to provide me with the answers he didn’t have. If they could find a medication that worked for me, more time could be bought. But they hadn’t found anything in the years leading up, and every day my disease turned more aggressive. Every time I visited a doctor a new diagnosis would be presented, or the bad news of a failed medication would be shared. Years of allergies and intolerance to the leading drugs for my diseases, countless failed treatments, and pain, so much pain. And then to hear that despite all my optimism I was going to die sooner than maybe even my own parents…

Five months later I landed in the Intensive Cardiac Unit at Queens Medical Center for ten days. I survived a “multiple cardiac event”, according to my cardiologist and the medical team that looked after me. Despite my doctors projections, my body had other ideas in mind for my time left on earth.

But something changed in me the night that I almost died. It’s not that I wanted to go… Sure some of us living with chronic pain have been down that road where we wonder if the pain is worth going on. Nothing as dark as giving into those thoughts though. And in the middle of my second heart attack of the night on my third night in hospital, apparently when the pain became too great that I actually blacked out, I had an epiphany.

No, I did not “see the light“. I mean yes, there was light, but clearly it was the doctors shining something in my face trying to wake me. I did however feel like I had a choice. A choice on whether to let go, or to continue on.

I don’t know how long I was in that place, probably only seconds. Later my doctors told me I could have died. And I knew if I had been willing to give up, I would have. But something had changed. Despite all the pain, and the knowing I didn’t have long, I still wanted to continue. Something told me that I had purpose.

A year and a half later I finally understand what that is.

Earlier this year I made the life changing decision to move to New Zealand, as healthcare was more accessible for me there as I was a citizen. More so than it was in the US, as it wasn’t affordable, even on Federal Disability. It was a chance to turn my life around as well, live healthier, make friends, maybe find my purpose.

I started bi-monthly Infliximab infusions in June, and had successfully gotten myself off most of my hardcore painkillers by October. I’d even lost a large portion of weight that I’d gained from years of Prednisone usage. I got some new hobbies, joined groups, and made friends, so many friends. I even started dating for the first time in two and a half years.

Sure, I was still in pain. My disease didn’t magically disappear because I moved. Chronic illnesses don’t drift off when you find love, despite what Disney movies try to teach us. I still spent multiple days in bed, fatigued beyond repair. Lung Disease reared its ugly head in a new diagnosis in August. Lupus followed soon after..

The change was that I felt I was around more people that supported me. People didn’t treat me as pitiful, and because of that I was able to let the real me shine through. I reclaimed the person I used to be, maybe not in body, but definitely in spirit. And I realise now it’s all because of footprints.

Just like others footprints made an impression on me during my illness, my footprints were helping others too. I accepted the love and generosity of friends and strangers in Hawaii because my blog had reached them in ways I didn’t know. I couldn’t see that the knowledge I’d learned in my own experiences were helping people just as those whose generosity helped me. Just by listening to a friend, or sharing a meal, I was leaving footprints on the journey of others, just as they leave theirs on mine.

Today as my partner and I concluded our two week vacation, one that I wouldn’t have taken had I not left footprints on his journey as equally as he left his on mine, I had my epiphany. We were talking with our Airbnb host, just as we were getting ready to depart for the airport, and she shared that she had lupus. She shared this only because I shared that I wrote a blog about living with invisible illnesses. Through this tiny piece of information she came to not only understand that she shouldn’t feel alone, but also some references I gave her for support groups. She had no idea the resources that were available to her, feeling isolated by friends and family who couldn’t or wouldn’t understand.

On the plane ride home I thought about my footprints… If I can leave pieces of myself behind, to help or to grow or to love, then no matter how much time I have left, that time was worthy. I have and will continue to make a difference on those who choose to share my journey with me, just as I share theirs.

Our footprints, my footprints, matter…

Fundraising is hard

When I first decided to follow my roommates advice and open a GoFundme account for donations, I was a bit skeptical. I’d seen people use sites like it before for a myriad of different reasons… Fundraising for that dream honeymoon, getting through college, replacing a car that had been totalled by a drunk driver, and then of course all the many medical reasons, like hospital bills, surgery/procedure payment etc.

At first I wasn’t sure if I was worthy of a fundraising page. Sure, I was sick. I’d been out of work for a year, my joints were deteriorating, they recognised my face at the ER, and I knew the insides of the hospital more than some of its oldest employees. But I’ve always had a really hard time asking for help, especially asking for money. I’ve always thought it was one of those things that shouldn’t be asked for, only accepted if offered. But times change. And people change. I had to go out of my comfort zone. And to be honest, I’d already had practice asking from the week before. And this way I don’t deal with rejection face to face. If people don’t want to help, then they don’t have to.

When I give money for charity, I like to know where it’s going. I don’t like giving a dollar at the supermarket checkout, or donations at doors of shops. Sure, they say it’s going to help put food in kids mouths, or help research for cancer, but how do you know what funds actually make it there? Is my $1 paying for more ads? More plastic donation buckets? The pockets of the heads of the fundraiser?

That’s why my philanthropy is selective. I like to keep bottles of water or granola bars in my mom’s car for the homeless veterans that stand at intersections. I’ll donate money to friends for whatever they may be fundraising money for. Or drop off cans and dried food at the food drives they do at libraries, supermarkets, and schools. I like to see my money actually helping. So I can understand why others get skeptical as well when donating. That’s why on my description page of my gofundme account I was very clear what I was fundraising for. Rent, medical bills, necessities. I want people to know how they are helping me.

But fundraising  is still really hard. My gofundme page records stats of how many people visit each day, and the number is surprising. A LOT of people visit! I’ve had it up for 18 days now and have received 17 donations totalling in about $3200, which is about 13% of my goal. Pretty great start I think. But then I get disheartened when I see that 300 people have visited my donation page.

I get paranoid that my cause isn’t an important one, or that people don’t believe I need the help. And I understand that not everyone has money to spare. It’s hard times. Not many of us have the luxury to give away money. When I donate, which is honestly probably only twice a month or so, I just think about it like I’m giving up one trip to Starbucks. When I was working I used to go to Starbucks pretty often and get a grande drink and a cheese danish. It’s a splurge that I don’t often get these days because of my financial hardships. But on average  back then I’d say I used to spend about $8 on one trip. When I was more financially secure I used to donate up to 10 times a month, which in my mind was two trips a week to Starbucks. So instead of getting a Starbucks, I’d spend money on someone who needs it more than I needed a blended coffee. And now, while it’s not 10 times a month, every other week I forgo the thought of that icy beverage, and donate to someone in need instead.

I hope that others in the future can do the same for me. And if not, well that’s ok too. Not everyone likes to help out. It’s not a bad thing. Just personal preference I guess. I was told two weeks ago that to receive help from others you have to earn it. Interesting thought process. A bit close minded for my  taste but we are all entitled to our own opinions. Freedom of speech and all that jazz.

But to the wonderful people that have donated so far, or intend to in the future…. well, thank you. I appreciate you giving up your Starbucks.

http://www.gofundme.com/sixthousandsteps

Priorities

It has come to my attention recently that our properties in life have drastically changed from when I was younger. And I don’t mean my properties as a kid have changed as I’ve grown, I’m talking in terms of time. Our priorities are vastly different than they were a decade ago, or two, or three. Things that were once not very important, like social media and status updates, have now taken over our lives. We put so much importance into these things and for what?

I read a fantastic article on distractify.com recently about priority changes in restaurants. A busy NYC restaurant had noticed a rise in negative customer reviews and had hired a team to investigate the problem. To summarize, the reason there were more negative reviews in 2014 than in 2004 was because customers spent a huge amount of time on their phones at the table. From the minute they were seated, to the check being brought to the table, customers were bothering their waiters over WiFi presence in the restaurant, taking selfies, taking food pics, texting, blogging, reviewing, etc. And because of this huge priority that these customers had made of their time spent on cellphones, the food got cold, time was taken from the waiter to assist his other tables, the wait times increased because people weren’t looking at the menus, or taking a long time to eat due to pauses to text,  and bad reviews were written as a result. The majority of these bad reviews had nothing to do with the restaurant going down hill after 10 years, but because of the priority change of people these days and the importance they put on their phones. I really suggest everyone take a gander at that article. It’s very eye opening.

The truth of the matter is that I am also a culprit of the “restaurant text”. I review restaurants and businesses for YELP, so I take pics of my food, the menus etc. But I tend to do it as quickly as possible, and I certainly don’t write the reviews there, or send out suggestion texts to my friends. That usually is it though. I’m not a fan of leaving my phone on the table while eating, no text or call is that important where I can’t eat my meal in peace, or disrespect my companion.

Everyone knows me as being a bit OCD, and anal retentive. I just don’t understand why you need your phone at the table. What happened to us as a society? And when did this obsession with our cellphones really  take off? I got my first cell phone when I was 18, my mom bought it for me when I started college. These days I see kids as young as five walking around with phones. Why does a five year old need a phone? If you can’t keep track of your kid, that’s not their fault, that’s just lazy parenting. It’s like those parents that put leashes on their children like they are dogs. Seeing that is the visual equivalent of nails on a chalkboard for me.

The worst is when people have to pick up their phone in the car. We have all these laws not about not texting while driving, or talking on phone, or using our GPS. But, fair enough, it’s your car, your phone. If you can’t wait til you’re pulled over to check your phone, that’s your prerogative. Texting your significant other, or sending an email, or watching a YouTube video while driving is up to you. But when someone else is in your car, and you do these things…. you’re basically saying “this text message is more important than your life”.

According to Don’t Text & Drive,1.6 million auto crashes a year involve cellphones. Of that statistic, half a million injuries are caused, and six thousand lives are taken. Six Thousand Lives! Because it was just sooooo important to text back right away. Or to answer the phone. Or to take a selfie while driving…

That is horrifying. What has happened to our priorities? When did our cellphones become more important than our own lives? When did status updates and social media become more important than human interaction?

If you’ve been to a Chili’s recently then you will have noticed the device that adorns their tabletops now. It’s a machine that you can order from, play games on, watch tv on, and even pay your bill. So, technically you can wipe out all human interaction altogether. You see these tables with parents and their kids… the kids are watching tv on this machine, and both parents are texting on their cellphones. Forgive me, but I thought the point of going out to eat was to enjoy social interaction, to get away from the tv and Xbox, and to spend time with each other…

Apparently not.

Our priorities are so fucked up, I don’t think we even realize how bad it has become. We are putting so much unnecessary energy into the wrong things.

I was yelled at the other day for something I put on social media. Someone was offended because they read on my social media page that I started a fundraiser to help me financially. They were mad because they read it on my Facebook and that I hadn’t told them in person. Well, to be honest, I hadn’t told them only because they hadn’t  returned my call. I’d called a few times over the course of four days, because at that point my fund had only been active that long. Yet no call back. No return of human interaction. I reached out, they did not. And yet, it was acceptable in their mind to call me only to yell at me for a status update? What part of that makes any sense?

Priorities… I wasn’t enough of one in their world to return a few phone calls. But they were angry that I wasn’t basically stalking them to tell them the news? That’s ridiculous.

Even more ridiculous is the fact that the state of Hawaii is doing nothing for its citizens that are ill with no income. There’s absolutely no housing for disabled people who are  ill, but still mobile. What options are there for those of us who don’t have a place to live because we are too sick to work?  There’s none! And yet, as I speak, they’re putting up 5 new high rise’s in Kaka’ako, like we have so many people living here that can afford multi-million dollar ocean view apartments.

In Hawaii Kai, they are currently building an “affordable housing rental complex”, that will be open to low income housing renters. What they don’t tell you though, is it will only be available to rent for a short period of time, before it’s opened up on the market for purchase. And guaranteed those purchase prices won’t be “affordable”. That’s how all these low income housing apartment buildings work. They are only “affordable” for a limited time.

Priorities… society is going to hell in a handbag. Our priorities seriously concern me. Something has to change. We have to change. And baby steps just aren’t going to cut it.

Please visit my website:

http://www.gofundme.com/sixthousandsteps