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.


He didn’t want me to love, and so I never did

Even before I got sick and my whole life turned upside down, my dad would tell me not to bother with relationships and love. From a young age he told me to concentrate on school and work, that I didn’t need to worry about the complications of romance. Despite my contradictory feeling on this matter, I think it really affected me subconsciously throughout the years. we are our parents children, right? Despite our feelings on how we swore to not be like our parents, to not make the same mistakes, we do, don’t we?

My parents divorced when I was very young. My mom raised me primarily, and I saw my dad every other weekend while we lived in the US, until my mom moved us to New Zealand when I was 10. Despite my dad’s feelings on the subject, I didn’t like spending time with him when I was young because he was so strict, and at times cold. Its no surprise to anyone that really knows me that my dad and I have not often seen eye to eye. He has always voiced his opinion on how I was raised, how he felt my mom kept me from him, and his general dislike of the situation after the divorce. No matter how many times I’ve told him I was the one that didn’t like spending time with him when I was little, and that I would beg my mom to not let me go to his house. He “forgets” every time I try to stand up for my mom and set the story straight, and remind him of who left whom. He left. Not us.

I think a lot of my fear of him when I was growing up was how much his “advice” felt like insults and put downs. To this day, he will always stand by his word that he was being parental, and voicing concerns. But when you’re 13 and your dad asks if you’re pregnant and pokes at your belly, that barely extends from your hips, well you tend to fear the comments and advice.  To be clear, I was NOT pregnant, I was growing into my body as any teenage girl would.

When I reached my mid-teens was when the “you don’t need a boyfriend” comments began. I was not to be deterred, and was as boy crazy as any hormonal girl of my age. But, when it came to the time of liking someone, I found myself to be quite commitment phobic. This went on long into my early twenties, and even gave me problems in my first long-term relationships. For years I believed that I wasn’t phobic of relationships, that I was just being sensible in not attaching myself to someone. It wasn’t until I found a really good therapist that helped me primarily in dealing with my disease, that I started to understand what had happened.

Subconsciously, I was following my dad’s advice for years, decades even. When I started working in my early twenties, the comments changed from “you don’t need a boyfriend” to “you don’t need to worry about marriage”. Now, I will never really understand why he said these things to me. I don’t know if he truly feels that relationships are a waste of time (he’s in his second marriage, so I can’t see that being an anti-commitment comment), or rather that he thinks I just shouldn’t waste my time. Or maybe he thinks I’m incapable of dealing with them, or that there are more important things I should be concerned with. Which may make more sense now that I’m sick, but these comments have  been made since I was 10…

My point is, despite my feelings that I always wanted relationships and eventually marriage, I think his comments subconsciously deterred me from having them. Or rather, having healthy relationships.

Now, I am 35. I suffer from several chronic illnesses, one of which will eventually lead to my demise. And I am alone.

With my illness comes the desire to not suffer alone, and I wonder if I’ve lost my chance to find someone. Days pass into weeks that pass into months, and the loneliness sometimes feels unbearable. Yet now, instead of that incessant nagging feeling that I shouldn’t worry about relationships and marriage, I now incessantly worry that I shouldn’t bother with them due to my shortened life expectancy. Is it fair to engage in love with someone when I can’t give them forever?

I have no one to blame but myself. I listened to the wrong advice for a long time, and now that I’m sick, I worry that I lost my chance to enjoy something I’ve always craved, but never let myself truly have. I can’t get over the feeling that it might be unfair to want a lasting love, if that love might only last five to ten years depending on my hypothesized life expectancy.

These are all what ifs and maybes. But sometimes I wonder if my life would have been different if I didn’t grow up with the whisper in my ear that relationships shouldn’t matter to me. Everyone deserves love, even if they are lead not to believe it is so. Both of my sisters have both married, and here I am dying of a disease that leaves me feeling more alone that anyone can imagine. Sometimes I wonder why my dad told me I shouldn’t bother with romance. Was romance to be avoided by everyone, or just me? And why was I undeserving?

The Dating Game 

I recently had coffee with an old friend, and we talked a lot about past relationships. So much so, that I’ve been dwelling on the memories of my relationships for days now. Truthfully, I’m sneaking up on two weeks here. Two weeks of late night insomnia, where my mind instead of doing the nice thing and allowing me to sleep, decides to remind me of every single person I’ve ever dated. Truth be told, it’s a long list, and sleep doesn’t seem to be getting any closer.

When I was younger, you could have called me “boy crazy”. I had a lot of crushes. Although, I was also shy, not having my first kiss until I was fourteen years old. An embarrassing affair at a friends birthday party, with all of my comrades watching hungrily to see if I’d mess it up. I did. Turned my head the wrong way, smashed noses. 

In time I got over the shyness, and in turn learned how to kiss, I suppose. With my seventeenth year came graduation from high school, my first real job, and college. I don’t quite know how or when it happened, but that year I blossomed. No longer did I feel like an ugly duckling, or shy as a mouse. I grew more confident of myself, and finally started to understand who I was as a person. That’s when I started to really date. 

As the World Wide Web grew more and more popular, and I was gifted a computer from my father, I found myself drawn to chat rooms where I could flirt more easily, having a mask of anonymity to hide behind. 

By the time I went to university in New Zealand, I’d found my stride in the dating world. My best friend Carmel and I used to constantly joke that this year or next year would be the year we would find boyfriends. And while we always gave it a laugh, and crushed on numerous, I don’t think we were ever fearful of not finding a life companion. It was only a matter of time.

Fast forward fourteen years, and here I am at thirty five, still single. Not that I haven’t dated. I’ve held two long term relationships in that time, as well as dated countless others. Do not misunderstand me, it’s not that I fear commitment. It’s as they say, I just haven’t found “the one”. 

For the last two years I could have sworn it had to do with my illness. I mean I did have all my hormones turned off due to long term pain management medications. Over a year of no libido is a long time. But now that I’m off them, and my hormones and libido are back in check, I can’t really use that as an excuse. Perhaps it was my insecurities all along that kept me alone. Confidence shows, so of course insecurities and doubt can show as well. Throw in a good dose of self loathing due to weight gain, and you don’t really paint a pretty picture.

So here I was, in a coffee shop, listening to my old friend talk about how they couldn’t find anyone to date who was worth it. And it catapulted my mind into a wormhole of every relationship, crush, sexual encounter, and glance, I ever had with another. Suddenly I was up at night wondering where I had gone wrong, if I should have given one a chance, or if I had wasted time with another. Your mind sucks that way. Anytime you want to sleep, it’s always there to count on with sneaky little unspoken comments like “they could have been the one” or “should have given that guy a chance” or “too late now”.

I hate my mind at 3am.

But despite my mind attempting to screw my sleep pattern, I did learn something of all this. My disease was never keeping me back. It was me. And all those other relationships and crushes and scenarios, well they didn’t work out because they weren’t meant to. My heart was still on reserve for the one who was worth it. 

We can’t judge our relationship statuses on the timing of others. My old friends dating life might not be working because he’s yet to meet his penguin (yes, I am using a Never Been Kissed reference, deal with it). Carmel found her soul mate eight years ago, and married him last year. It doesn’t mean that I will never find love. It just means that it’s not my time. Both of my sisters have married already, one being ten years younger than I. Doesn’t mean I won’t. And it doesn’t mean I will. But I’ve got to stop thinking negatively about dating. 

People say you’ll meet someone when you’re ready. I don’t think I was ready before.  But that was then, and this is now.


Let’s talk about karma

I had an interesting revelation recently about karma. See, for the longest time I thought that karma wasn’t on my side because of the chronic illness I suffer from. I figured things surely weren’t going my way especially if I was in constant suffering from this terminal disease. I’d hear other people complaining about their lives and I admit that it really frustrated me. Not because they aren’t deserving of complaints, no judgments here, but because they sounded so minor in my mind to what I was feeling. And that’s of course wrong. I shouldn’t judge others lives as much as they shouldn’t judge mine. I wasn’t mad at them, I was mad at my disease. 

I guess for a long time I felt cheated by life. Cheated by the world, for having this incurable pain that I had no control over. But then I had this great epiphany a couple of weeks ago. It was just after receiving an amazing gift from a friend. I had unfortunately just cracked one of my teeth, while eating boneless chicken, no less. I was desolate because I knew I didn’t have enough money to go to the dentist, let alone go and get a root canal and a crown, which surely would’ve been the case. I was super depressed and had posted on Facebook how frustrated I was that I was too broke to go to a dentist. And amazingly an acquaintance of mine reached out through a personal message and offered to pay for a dental visit for me. 

I was floored. Having only one other time experienced such generosity, I was shocked. 

Despite my protests, my friend insisted I go to the dentist the next day, which I did. And very unhappily came to find that it was not one tooth, but two! Could the news be any worse? Yes. It would cost close to $4000 to fix my teeth. I was even more depressed by that point. So I told the dental assistant to call my friend, whom would be paying for the consultation, and he would give her a credit card over the phone. While she went off to collect her few hundred, I sat trying to comprehend how I could come up with all that money for a problem that was a pretty big issue. They were my front bottom teeth, and it wasn’t something I could ignore. Imagine my giant surprise when the dental assistant returned and told me my friend had not only paid for the consultation, but also for my two root canals AND crowns. Almost $4000 in dental surgery and reconstruction!

I was speechless. After agreeing to come back later that afternoon for the dental surgery, I contacted my friend, worried at how much money he had spent. But he was so nice! Told me he was glad to help me, having known how much I needed it. Not only did he know I would never be able to pay him back, he didn’t even ask for me to. I could not believe the generosity of someone I didn’t know that well.

That  night, as I rested at home with a swollen and numb jaw, I also remembered the generosity of another person. Someone who had read my blog and sought me out because of it. A very generous person who treated my mom and I to an amazing meal at their restaurant, just as a way to say “I care”. Two people who barely knew me, but understood my struggle, my pain, had reached out and given amazing support in ways I didn’t know could happen to people like me.

And of course I have received support in many other ways, from many other people as well. Friends who have bought me groceries when I’ve run out of food stamps, or couldnt get to the store. Friends who’ve paid my phone bill because all I could afford was rent. People who didn’t even know me and donated to my fund to help me have a home. Family members who have helped get me to the er and the doctors office. Family that took care of my cats when I was ill or away. As well as two military families that took me in after I couldn’t work anymore. And all of this done selflessly, with no expectation of payback, or strings.

I have been very very lucky.  I realize this now. All this time I thought I had bad karma because of my disease. That I was being punished for any wrong doings I’ve done in my life. No. How very wrong I was. My karma is outstanding. How else to explain why so many amazing  people do amazing things for me in my life? How else to explain what wonderful people I have around me, who dedicate themselves to supporting and loving me? If I were a bad person, people would not help me as they do. You don’t give your generosity to someone you think isn’t worthy of it. Not generosity like I’ve received. 

Silly me. Bad karma? No no no.

My karma is outstanding. What a wonderful thing to behold. And thank you to all of the people in my life who helped me realize this.


Marking Time

I often find myself thinking a lot about time. Not time in the sense of watches and clocks, but more as how it relates to me, and how it passes. For someone with an illness or a disease, time can mean a lot of different things. Time can mark minutes til your next medication feeding, days until another doctors appointment, weeks between ER visits, or years left on your life clock. I’ve been thinking about how precious my time is. And how limited it can truly be.

I marvel at how my time is perceived by different people around me. A family member made a comment to me the other day about how well they thought I’d been doing in the last six months. I found it to be such a strange observation, as I felt the last six months had been fairly brutal on my body and mind. Since January I had been in the ER five times, broken three ribs, had one particular episode where I was very close to almost dying, and had sustained a lot of mental stress surrounding my filing for Social Security Disability Benefits. How did that appear as doing well?

I guess it all depends on everyone’s perception of time. For the person who thought I was doing A-OK, well, I guess that was to be expected since they only saw me on my good days. No one wants to visit or support during the bad days, so most of my family and friends only see me on manageable, low-pain days. And if there were more of those days in their memory, then I guess a lot of time had been spent with me on good days. At least they were showing their support, however, by wanting to see me. They may have had a different perception of how I was actually doing, but at least they made time to see me often enough to draw that conclusion.

For my mom, who is my primary caretaker, my time has been marked as not so well. She sees the good, the bad, and the ugly. Now, in saying this I’m not inferring that my last six months has been a torturous journey. I have certainly had my good days, maybe even good weeks. But for us, the time marked is seen through a different pair of lenses. While this part in her life was definitely not chosen, my mom has done extraordinarily well in her role. I may not have even made it through to this time and place if it were not for her. My mom always has time for me. She understands more than anyone what I’m going through and does everything in her power to help and support me.

A friend of mine was recently saddened by a situation involving some of her close friends. It was made known to her, and apparently not in a nice manner, that  her presence was unwanted at a social gathering. Understandably, she was devestated by this. But upon comments from concerned friends, she lamented that while their behaviors were unsatisfactory, the people in question were still her close friends. I understood exactly where she was coming from regarding letting bad behavior slip by when it concerns people your known a long time. While having not dealt with the exact same scenario, I have on many occasions let people walk all over me, or treat me unfairly, only because of our history and the time spent knowing them.

The whole ordeal gave me a lot to think about, and actually plagued me with thoughts on it for a few days. My time, more so now than ever before, is precious. Because of this, I want to surround myself with people who want to spend time with me. Not because they have to, or because they feel obligated, and especially not if they feel guilty. But real time spent because of love, friendship, and support.

My lens, much like an hourglass, views my time like grains of sand, slipping through my fingers at the beach. I see it in front of me, clear as day, and yet there is nothing I can do to stall or slow it. And one day, the sand will all be gone, along with my pain.

 I have an old friend who works extremely long hours, with little to no breaks, and often for weeks at a time without a day off. She is very dedicated to her work, so her full schedule while hard, is not a deterrent. Because of this, and the fact that she travels a lot for work, we rarely see each other, often going months between visits. However, she always commits to making time to see me and catch up whenever she can, sometimes sacrificing her only day off in weeks to drive to my side of the island to take me to lunch. And when I object, which I often do as I’m concerned she doesn’t rest enough, she always tells me that

“You make time for the important people in your life, Christine. Actions speak louder than words.”

I cannot agree more with that statement.

I’ve always been a big ‘people person’. I have a lot of friends, a lot of acquaintances, and I’m constantly meeting new people. And while my disease has changed my life a lot, and I’m unable to make as much time as before to accommodate seeing all my friends, I make a pretty good effort. I’m pretty good at keeping to my social engagements, and even if I’m ill and have to cancel due to a pain flare or last minute doctor’s appointment, I almost always reschedule for the next day or the closest next time available.

I have someone else in my life, whom unfortunately does not make time for me, despite their insistence of how important I am to them. They make plans with me often, and yet there is always a last minute cancellation, with apologies all around, though sometimes there’s no explanation at all. As much as the world is in a rush, there is always time to make a quick call, apologies can take a few sentences at the most. Hell, they can even be texted. Anyone who says they don’t have the time is lying.This person often makes it very clear that I am to drop everything to accomodate them when their schedules clear, however if I ever have a request or an invite, they have no time for me. Frustrating… I can’t stand flakiness..

Actions speak louder than words.

Here’s where marking time becomes important. Whether you’re like me and have a debilitating disease, or you’re a regular Joe Schmo, your time is important. Your life is important. So the people you give your time to are also important. Why do we give our time to so many people who make it clear that it’s not as important as them and theirs? Why are we wasting our efforts on people who don’t return our love and support?

Is it because they’ve been around a long time? Does length of friendship or family history make it ok for others to walk all over us, or hurt our feelings? The answer is no. Family and friendship mean nothing if love and respect don’t go hand in hand.

Time is important no matter where you are in your life journey. We respect time, and in turn we should respect the time of others as well as ourselves. I realize that while my time may be limited, and my life span will unfortunately be cut shorter than others of my generation, my time is still important. So I need to surround myself only with those who want to play an active role in my life. If you truly believe you are an important person in my life, well… Prove it.




Thanks to all those who continue to read my blog and have supported me throughout my journey with Rheumatoid Disease. If you like to help support me on a final basis please visit my page at http://www.gofundme.com/sixthousandsteps



Support can taste really good

I’ve spent the better part of the last year humbling myself by asking friends, family, and even strangers for support in helping me live. It took a lot intense mental therapy to understand that while I used to be very independent, I now needed help from others to survive. I couldn’t fight this thing alone, not if I wanted to win. After a lot of inner turmoil as my stubbornness fought for control, I finally realized that it was ok to ask for support.

And I’ve realized that support doesn’t just come in the form of financial aid. Yes, I do have a GoFundme donation page that I use to help collect funds so I can continue living comfortably. Yes, I do often ask friends and family for financial support due to my complete lack of income. But money and helping pay the bills is not the only way people can help lend support. I have friends in my life that while they aren’t in a completely similar situation, they do understand what it feels like to live off food stamps, or just from one paycheck to the next. These friends find other ways to lend help, and I often find them to be the most creative and caring.

I’ve had a lot of old friends and acquaintances come out of the woodwork once news of my disease got around. While there are 1 million people living on Oahu, we are still a small community. Word travels fast, especially aided by social media. When I first posted my Life Fund Page on Gofundme I received a lot of donations from people I hadn’t heard from in years. Old friends from high school that I hadn’t spoken to in decades. Family friends who I rarely kept in contact with. Even strangers, whom had read my blog posts on WordPress and Twitter.

Then also offers to help me out in other ways. A lot of people offered me rides to doctors appointments, or aid in picking up groceries and household items. My best friend from high school’s mother invited me to a garage sale and let me have all the items I wanted for free! To this day I still love my kitchen shelves and coffee mugs she gave me, on top of her generous donation.
Her daughter, one of my most cherished friends from my Kaiser High days, took me to lunch last month while she was home for Christmas. Not only did we have a great lunch at CPK while reminiscing about the old days, but afterwards she treated me to a pedicure as well! While we relaxed in the massage chairs at the salon and ooh’d and aahh’d over our foot massages, my friend explained that while supporting someone with money is great, it’s also just as great to do something lovely and meaningful for them too. And I couldn’t agree more.

I don’t need a donation of money to know that my friends and family care. Sure, it is extremely appreciative, and very helpful. But, it’s not necessary to show that they care. Actions speak louder than words, and even money in some cases. Show me that you want to help and I will be grateful for you.

Three or four months ago, I was contacted through social media regarding my blog by a man I’d never met. His email stated how much he appreciated my writing and how it really spoke to him, especially since he had a chronically ill brother, and so understood the struggle. To show support and appreciation he offered to buy me and my mother dinner at a restaurant he ran in town. I was floored! I couldn’t believe a stranger wanted to do something nice for me, to support me. After consideration,my mom and I went down to his restaurant Rijo, down by Honolulu’s waterfront. We really didn’t know what to expect. I figured we would meet the man in person and he’d comp us a glass of wine and some pupu’s.

Wow was I wrong! From start to finish, Mom and I were treated like celebrities. Servers waited on us hand and foot. We ordered delicious entrees, but even more food was brought out for us to “try” while we ate. Appetizers, mains, desserts, coffee, we were stuffed! Our host was so amazingly friendly and gracious, making sure we were taken care of the whole time. And the reason, the only reason, was to show me support. To show that people care, no matter who you are, no matter who they are. It was a wonderful experience that I will never forget, and neither will my mom.

Of course that was an extraordinary circumstance, and I don’t expect such generosity all the time. But it serves my point well, that support comes in many ways. You don’t have to throw money to show that you care. I’m perfectly happy with people coming to visit and say hi, or meeting me for a walk or a cup of coffee. Or like another good friend of mine who takes me to the Humane Society so I can visit the kittens in the Cat House. There’s nothing like a furry bundle of love to kick start happy mental health. Gosh, they are so addicting!

My point to all this is that it doesn’t take a lot to show that you care. Actions speak louder than words, but I’ll accept a quick “checking on you” phone call as well. I appreciate support in all forms. And mostly I appreciate the time taken to give it.




If you would like to help me financially, please visit my donation page. Every little bit helps!

Christine Lilley’s Life Fund

Thank you



I hope you’re thankful

Everyday I see people on the street living their lives, and I wonder if they are thankful for what they have.

I saw a woman at the mall yesterday with her arms full with shopping bags, they were literally dragging on the ground, and she was struggling to get a better hold of them. She turned to a man I presume was her husband and was grumbling about something I couldn’t make out. In the end she left her bags at her husband’s feet, took the credit card he pulled from his wallet, and left him sitting there looking exhausted and a bit sad. And I wondered… Was she thankful to have a husband that sat and watched her shopping while she strut all over the mall in search of the perfect stiletto? Was she thankful to live a life in which she was financially able to shop til she dropped? Was she thankful to have a life at all?

I often wonder if people realize how lucky they are to live the lives they have. If they are thankful to be living at all. How often do you really sit back and contemplate your own existence? How often are you thankful for the roof over your head, the food at your dinner table, the air in your lungs?
I think people, society, humans take life for granted. Becoming so accustomed to a certain way of life, we now take it for granted.

I wonder if that woman in the mall has ever known real hunger, or what it feels like to wonder where her next meal would come from? I wonder if the barista from my local coffee shop has ever been homeless? I wonder if any of my doctors have ever experienced real, chronic pain? I wonder how many people out there in the world wake up every day like I do, wondering if they will ever be well again?

I don’t take my life for granted.
I am very aware of how little money I have, and how very much pain I have. I am aware how my roof over my head is an illusion that could be taken from me in a second,  and how many meals I have left in my pantry. I know exactly how little true friends I have, and how many not so true there are as well. I am aware of who my real family members are, the ones that support me no matter what and would give everything and anything to help me, and I know the ones who just like the title.

I can’t take things for granted. If I did, I’d be in a very different place than I am now. I’ve learned who I can trust, and who I must be cautious around. I’ve learned exactly how far I can make my food stamps stretch, and how many meals I have til I’ll be hungry again. I’ve learned that you don’t need new clothes, music, and trinkets to be happy; just a $2 used DVD, a pot of hot tea, and two cuddly cats on your lap.

Take some time and have a wonder about it yourself. How thankful are you for the life you’ve been given? And have you said thank you for it?

If you would like to help me in my life please visit my campaign page:
Christine Lilley’s Life Fund