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

Affordable housing is a lie

I was watching the news the other night at my mom’s house ( I don’t have cable at home, it’s too expensive), and there was a story about new affordable housing being built. I couldn’t help snorting in disdain at the newscast because it was such a load of BS. In Hawaii Kai, a well known wealthy suburb on the East side of Oahu, they’ve been building an “affordable housing” apartment complex.

As a Kaiser High School grad, I lived in Hawaii Kai for several years when I was younger. During high school it was in one of the many townhouse complexes built atop man-made islands that make up Koko Marina. When I was in college, Mom and I lived in two of the apartment buildings that sit against the mountains towards the back of the valley.

It was a nice suburban community, filled with three shopping centers boasting delicious eateries, fashionable shopping for tourists, and a Costco. But there was nothing about the community that screamed “affordable”. Hawaii Kai has always been known to be an affluent community, and new housing developments always catered to the upper middle class.

When I heard they were building an affordable housing rental complex in Hawaii Kai I was surprised, and suspicious. Apartments in the area always ran for much higher than those of the same square footage in other parts of the island. Basically out there you were paying for the zipcode, the bragging rights of living in a wealthier area. When I first heard about the new development three months ago, from a friend who works for the state, I had expressed interest. With the growing aggression of disease,  and inability to get into Section 8 housing due to a four year long waiting list, this building might be my chance to find something more my speed. Sure it wouldn’t be up and running by the time I needed to move in August, but it would be there waiting for me in 6 months to a year when my Social Security had kicked in and I was looking for something more permanent. Or so I thought.

My friend then let me in on the real buzz about this “affordable” community. Once this apartment building was ready for occupancy, rentals would open up on the market for a limited time. Yep, you read that correctly. LIMITED. For six months, maybe a year if the state was feeling generous, apartments could be rented at the affordable housing rate. I believe the newscast said around $1200 for a studio (which really isnt that affordable). But after a certain amount of time had passed, if there were apartments still unoccupied they would be open for purchase by anyone.

Affordable housing my ass. So what the state is really saying is, well we want to show that we have made an effort to help the housing shortages but we are still greedy and want more money. And honestly, I’m just not surprised. Every time I go into town these days, especially in the Kaka’ako area, they are putting up another ridiculous high rise with apartments that no one in Hawaii can afford. Those apartments end up being high end vacation rentals or are bought by International visitors to use for their needs.

When I started looking for apartments in the last couple months when I knew I could be close to facing homelessness, a few people told me to look into the affordable housing complexes run by the state. I was given some names and phone numbers to try, and I set forth to gather info and find a place to live. Three out of the six numbers I called told me the apartments were no longer just affordable housing, that they had opened up for sale. I could be put on a waiting list for one of the rentals to open up but truth be told the lists were long. The apartments that were still completely used for affordable housing were all full up and also had long waiting lists. So I was just S.O.L.

What are people like me supposed to do? I’m on a four year waiting list for Section 8 housing, but that only means that once my four years are up I get put into the housing “lottery” that they use. There aren’t any affordable housing complexes that have rentals available, and a lot of them have sold more than half of their properties to outside buyers. I don’t have a family that has room available for me to stay in, and my mom has done the best she can to overcome all the obstacles that come with being the sole supporting parent. I’ve started a donation campaign to raise money for rent, but without verifiable income, many places are hesitant to rent to me anyway.

So basically my situation is like looking at a huge billboard that’s flicking me off. All I can do is put a smile on my face and hope for the best. Hope that I can get more donations and pay rent on an apartment, affordable or not. Hope I never have to know what it feels like to be homeless.

And laugh at Hawaii News Now when they try to pull the wool over our eyes yet again. Good thing I have sharp cutting shears for just that kind of thing.

***If you would like to help me move towards being more financially independent and not homeless, please make a donation with the link below. Every little bit helps!!

Christine Lilley’s Life Fund

Addressing my fears

Today my therapist told me that it’s important to address my fears. I guess there is a part of me that’s been hiding from them and from the reality of my disease. So here they are in list form so I can start working on them…

**My own mortality

Each week I am faced with a new diagnosis, often scarier than the last. Two short years ago I only had Rheumatoid Arthritis, and now it’s super aggressive, and I also have Lymphoma, Osteoporosis, possibly Cervical Cancer, and a soon to be increased risk of Bone Cancer.

This isn’t just me looking to the future for remission anymore. With the increasing fractures brought on by day to day activities, the worsening symptoms and side effects, it’s been made clear to me that I am not getting better and that I should be aware of all possible outcomes, including death.

33. I’m 33 and I have to think about the chances of my life ending in the next decade, and not five to six.

**Homelessness

Its becoming more and more of an increasing reality with each passing day.  I haven’t raised enough to move out and I need to find a new place to live very very soon. I’ve asked, even begged, family members to help and have received very little in return. I always thought that if my circumstances became dire, somehow someone would step up and help me. It’s incredibly horrifying and scary to realize that I was wrong. Blood is not thicker than water as it turns out.

I can only be eternally grateful that friends and even friends of friends have stepped up and made amazing contributions to my health and wellbeing. To those who have supported me selflessly… Thank you.

**Pain

You’d think I’d be used to the pain by now. But I’m not. I thought I had experienced the worst that my body could deliver in the form of inflamed joint pain… Then my ribs cracked. I felt every bump, every pothole, and every imperfection on Hawaii’s roads today as if they were a tiny Armageddon inside my body. Each time the car hit a crack in the road my ribs felt like they were splitting slowly one by one. Each time we came to a stop it was as if I had all the air sucked from my lungs, an elephant placed on my chest, and a drill sergeant yelling at me, demanding I take in a deep breath.

Every day I feel more pain than the last. A new nightmare setting up shop inside a body that welcomes it with open arms.

**Loss of self 

All these crazy medications on the market these days have some of the worst side effects you can imagine. And the insanity of it all is that I started with ONE DISEASE. Rheumatoid Arthritis. But to fix the RA and manage the pain, I had to take steroids, biologics, and opiates. These three types of meds can cause a myriad of health problems including exhaustion, pain, weight gain, cancers, loss of Bone density, dizziness, compromised immune system, and more. I received ALL of these complications including two types of cancer. So instead of ONE problem, I now had several. Two years later I have now ALSO developed Osteoporosis. And the only good medications on the market for really helping with that can cause you to become half of yourself. To function on this medication I will have to have a pain medication pump surgically implanted in my body, take anti-depression and anti-anxiety medications, and basically hermit myself in my home as to not accidentally break my body.

Yes, this is definitely the life I’ve always dreamt of…

But you know, I’m lucky they tell me. Lucky to be alive.

Alive… Is that what this looks like?

Please help me not be homeless by donating here:

Christine Lilley’s Life Fund

“A letter to my daughter”- A Mother’s Perspective of RA

The following post is not written by me, but my mother. It is a letter written in her own words on what her life has been like while I’ve had Rheumatoid Disease…

Dear Christine,

I am writing to let you know how my life has been in my first year of retirement but more importantly how it meshes with yours. After losing my high paying job, moving to AZ and working with special needs children in kindergarten  I realized it wasn’t all about the big bucks. The AZ job was truly rewarding. Being able to work in a rural school district two minutes from my home, flying planes, riding motorcycles and enjoying desert life was so much fun. After hearing about your decline in health I felt the need to be there for you in Hawaii. So after 6 years with the school district I returned to Hawaii to live back in a truly remarkable location: the beach house. However it hasn’t all been sitting in that hammock sipping  Mai Tai’s. Oahu is expensive, crowded and the endless clogged arteries they call freeways were a shock after being gone so long. But it was all worth it being closer to you, being retired and being able to help you.

As I watched your health decline with RA it became the norm to sit long nights in the ER, constantly visit doctors, sometimes 2 to 3 times a week, and put 90 miles on my car daily was not unusual. Pharmacies, doctors visits, procedures and tracking the huge volume of paperwork that were associated with your illness. Working for American Express or FHB or even shuffling investments for 10 financial planners seemed easier compared to how  I became bogged down with trying to help you with your filing. 

My car tracked how many hours I had been driving and for the small island of Oahu 5 hours was often too long to be in a car with your nausea and side effects from the infusions. We went through so many different experiences from being trained to administer injectable meds, to long hours in hospital drug infusions centers. We have been through a lot. It has been a challenge and a difficult one.

My partner feels I do too much, however I disagree.Your father has failed to turn up to one infusion center as promised and this saddens me. I have filled the gap that was left. Back-up has not been there. Promises of rides have been a waste of time. You were told to catch a bus with a cane and narcolepsy, I don’t think so. He may have vowed to care for me in sickness and health, but this certainly hasn’t trickled down to you, our only daughter.


Sometimes I feel sad for what you are missing. I see women jogging by with their strollers, families with kids in tow, and I know the life you have without the purpose employment brings is a challenge. I want you to know I’m there for you. I may come and go in attempt to enjoy travel and adventurers that time now permits. I may not always be available every day but with mutual respect and love we will get through this. I admire the tremendous courage you show, the ability to push on through the hard days and the optimism you show for a chance in the future for remission. I respect your independence and hope that the future becomes brighter and allows you to live as before with the lifestyle you deserve. Financially it has been a huge struggle and I know you are grateful for the accommodation you have received. It will get better, I can feel it. Stay on track and respect those kind people that have stepped forward to help you… mentally , physically and financially.

You are a wonderful lovable girl and we all want to see you shine especially me.

Love Mum.

If you would like to help me become more financially independent, please donate to my fund, every little bit helps:

Christine Lilley’s Life Fund

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