Blog Archives

Working while disabled…. Oh, the irony

It blows my mind sometimes to remember that I’ve been disabled for over three years now, and out of work for two. It’s been a really rough lifestyle change for me, especially because I used to be so independent. If someone told me three years ago that I’d one day be living off food stamps and a stipend of $250 a month, well, I would have laughed in their face.

Before I got sick, I lived a really active life. I had a full social calendar: I spent time with friends, went to the beach nearly every weekend, walked the Makapu’u Lighthouse trail and climbed the 99 step staircase on Diamond Head,  had family dinners occasionally, and travelled as much as my income would allow. And while I wasn’t rolling in Benjamin’s, I lived a comfortable life. I ate out at my fave restaurants often, had no problem buying those cute new shoes at Ross, and enjoyed going to the movies any day of the week, not just the $6 discount ones. So you can imagine how very hard it was to go from being happily financially independent, to relying on food stamps to fill my fridge (though to be honest, I never got enough monthly to really “fill” it). Or to have to feel helpless each month when I tried to pay $500 worth of bills with only $250 of financial aid. It was rough. And I knew the only way I could get through this new enforced lifestyle change was to apply for Social Security benefits. So I applied. And waited. And waited…

After two years of filing paperwork with my lawyer, gathering unending medical records, and not to mention dealing with multiple doctors and ER visits, and countless days of being stuck in bed in pain, I was finally granted Social Security benefits on May 11, 2016.

However, it was a bit anticlimactic, in the sense that my new Medicare benefits wouldn’t start until the end of November, pushing back my surgery for the much needed pain pump. The entire reason I was able to be seen by a judge so soon was due to a letter my doctor wrote, outlining that it was medically necessary that I get a pain pump surgically implanted. And not only was it necessary, but it needed to be done asap. I believe that letter was how I was granted a hearing after having only waited two years. I’d heard of residents waiting up to four years for theirs, so I knew I should count my doctor as one of my many blessings. And while I’m very happy and grateful that I was granted Medicare, as my state funded insurance wouldn’t pay for the pump, I was stressed that they told me it couldn’t start til the end of November. That’s 5 months away! What part of “medically necessary” and “needed ASAP” had gotten lost in translation? And on top of this great and also not so great news, I’d found out what my monthly cash allowance would be…

Now, usually when I’m told about a money allowance I’m going to be given, I always round down. I never count my chickens, and while optimistic, I usually tend to expect the worse. That way I’m almost always pleasantly surprised.

When my lawyer and I originally went over my case, and she explained to me how things worked, an amount was mentioned. I was really happy with said amount and foolishly based all my future plans around it. However, when my Social Security benefits were finally granted and I was told how much financial aid I’d be receiving, I was in for a rude awakening. The amount my lawyer had originally mentioned was no longer on the table. The financial aid I was to receive was barely more than I’d been getting from the state for the last two years. I felt sick to my stomach as I realized that there was no way I would be able to live off of it without finding some sort of supplemental income.

Reality set in that despite the fact that I was deemed “disabled and unable to work” by the federal government, I would have to do something to make some extra income, or I’d be facing homelessness again. I had wanted to close my donation fund once I’d been granted Social Security, but decided to leave it active for the friends and family that still wanted to help support me financially when they could.

But that would still not be enough to keep my head above water. I ended up doing some research and learned that I could work part time, as long as I didn’t make too much money monthly, and that a supplemental income wouldn’t affect my benefits. It seemed the only realistic option for me to do. But what job could I possibly get with my current ailment? I was deemed “unable to work” for a reason. There was no way I could return to an office job. I mean I’d just spent two years arguing that I was unable to work because of my disease, and now I’d have to work anyway just to be able to make rent?

I knew no matter how hard things got, I absolutely positively needed to keep my apartment. It was my home base! A place where I felt safe and comfortable. Not to mention that I also medically needed it due to the nature of getting my pain pump in December. Patients receiving the pump needed to live in a stable environment (not couch surfing) , and have their own quiet and comfortable space. My doctor had told me he’d denied people in the past to receive the pump due to unfit living conditions. I’d worked too long and hard to get these benefits only to be denied the one thing I needed so desperately. 5 months away or no.

For the past couple years my older sister Emma had been selling a high end skin care line through direct sales. While it had started as a part-time gig that she did for a little extra cash on top of her full-time day job, her leadership skills and drive to do well took it to a new level. She ended up buying herself out of her full-time gym franchise, so that she could turn her part-time gig into a career. Because the product was only available through word of mouth, social media, and direct sales, it was easy to make a lot of money, and quickly. My sister went from a struggling gym owner, with having barely any time to spend with her sons and family, to a successful stay at home mom, with money in the bank, and a smile on her face.

When she heard that I needed a part-time job that could allow me to work from home, on my own schedule and time frame, and where I could be my own boss, she knew that her new career path was the route for me to take as well. I did some research, and it looked like this kind of work was acceptable for the Social Security administration, and it seemed like really the only kind of job that I could handle. It would be direct sales that I could do from home, and even from the comfort of my own bed if I wasn’t feeling well. I could make my own hours, and be my own boss. And the most important thing of all: it would put a little bit of much needed income in my pocket to supplement my small financial aid benefit.

Now, don’t get me wrong, the irony is not lost on me that I’ve been working hard with my lawyer to get Social Security benefits because I can’t work a regular job. But I feel like the federal government really forces us to have to do that, because we aren’t receiving enough financial aid to live off of. How am I supposed to pay rent, utilities, phone bill, medical bills, and life expenses with well under $1000 a month? It’s impossible. Especially in Hawaii.

And so here I am…

I’m supposed to be so excited that I’ve been awarded Social Security, and I am. But it’s anticlimactic. Because despite being awarded this necessary life assistance, it’s just not enough to sustain.

And here I am….with Social Security financial benefits, to start towards the end of summer.

And here I am….with Medicare medical benefits, to start at the end of November.

And here I am….faced with starting a new job after having been unable to work for two years because of my extremely debilitating, and painful disease….

Yay me?

It’s day two since I started my “new job”, and I’ve been in too much pain to even get through the welcome packet, and watch the training video. I can’t even fathom what other people are forced to do to supplement their own incomes. Not everyone has a supportive sister that just happens to have an in on a direct sales job that you can do in your pyjamas. What must they have to put their bodies through in order to stay afloat?

Is this what you wanted Social Security? Is this what you had in mind for me when you decided on that ridiculously low  financial aid amount? For me to fight for benefits, only to have to still work with them to survive?

Oh the irony.

 

 

 

For those who would like to make a donation to my active life fund you can visit my webpage: http://www.gofundme.com/sixthousandsteps

And for anyone interested in information on purchasing products from Rodan + Fields skin care line, #1 in the U.S. for anti-aging, as well as blemish & acne care, please feel free to email me: sixthousandsteps@gmail.com

Advertisements

Why them and not me?

Earlier this evening I was talking with a friend about her dislike of her current living situation. (For anonymity purposes, we’ll call my friend Jane,  and her landlord, Sarah.)
Jane had recently moved out of her parents home and was “couch surfing” at a mutual acquaintances house, until she could save enough to rent a room somewhere. One of her chief complaints of her current situation was that she thought her temporary landlord, Sarah, was lazy and treated her like a maid, often refusing to take out the trash and pushing that chore on to her daughter or Jane. I asked Jane if she was contributing financially to the household while staying at this house and she said no. Realizing the reality of the situation, I advised Jane to not over think the issue, and as a guest who wasn’t financially helping out it was wise to help in any other way she could. In turn, her chores around the house could be seen as a form of rent. Jane did not agree.

Having seen Jane in a similar scenario before, and not willing to lend a hand then, I wasn’t that surprised that her unwillingness to help out hadn’t changed over the years. I reiterated that it was the polite and right thing to do for someone who was guest in another’s house, and that she should be grateful that she had a roof over her head at all. Especially since so many people in this state did not.

While agreeing that chores were something good to do (though I doubt it would be followed through with), she complained that it wasn’t fair that she should do everything while Sarah did nothing. Stressing that it seemed like all that Sarah did was laze about the house watching television.

The thing about being sick, especially with a pain disorder, is that you’re not always feeling up to house cleaning. More often than not dirty dishes start to pile in the sink, the trash starts getting on the full side, and excess kitty litter starts crunching underfoot. Family, friends, and even houseguests may not realize how exhausting just a trip to the dumpster out back can be if you’re exhausted, or how scooping kitty litter can seem like the most daunting task in the world if your wrists and hands are swollen.
I reminded Jane of this, but Jane was ready with a response to everything, she’d brought her complain game and was ready to play ball. Jane then lamented that even so, she shouldn’t have to do all the chores if no one paid rent at all.

This brought my advice to a screeching halt. Wait, what do you mean no rent? How could she rent a house and not have to pay rent? In Hawaii no less!
Well, as it turns out, Sarah was lucky enough to claim free housing from the state. A whole house for her and her daughter. A house!
My cheery disposition over Jane’s “ordeal” started to fade as I once again became enraged with my state’s cracked system.

How is it that someone who doesn’t qualify for food stamps instead be rewarded free housing? I was told several times (after many long hours on the phone with the state) that free housing only came to people who had severe disabilities or were supporting more than 3 people while unemployed. Well, Sarah, like so many others that reaped these benefits, did not hold that criteria. Since when did Fibromyalgia, and a mild case at that, warrant not paying rent? And how can someone who doesn’t fit the bill for food stamps, which by the way aren’t at all hard to get, still be able to sign up for housing benefits?
For the record, I’ve been receiving food stamps since the month after I stopped being able to work, two years ago. But when I applied for Section 8 housing (our states version of housing benefits) I was told my disability wasn’t severe enough and there weren’t any openings for at least four years anyways.

Enter about 10 swear words and expletives here _______.

Now at the end of the day, my frustration is not at Sarah. I don’t know her whole story, nor what she went through to get the benefits she now has. She indeed may qualify for them through a loophole or an unseen disability or personal issue. While it may appear as if it started there, my anger and frustration is not with her. It’s with our extremely flawed system.

I have been waiting for almost two years now to have a hearing scheduled for Social Security, just so my case can be seen. Just seen by a judge, not even granted. That’s how long the waiting list is for judges to hear new cases. My pain psychologist once told me that each Social Security case worker has anywhere between 1200 and 1500 cases each to go through. Each!! And according to my sources there are about 15 case workers actively reviewing cases, so you do the math!

For two years I have waited patiently to be scheduled for a hearing, even eventually hiring an SSI attorney to help the process go smoother and faster. Still no word. And in the meantime, I receive a small monthly allowance of food stamps to help with groceries each month. And that’s it. With no income I don’t have a way to come up with rent, bill money, or aid for medical treatments. All of that hangs on the big IF I qualify for Social Security.

For those that know me, I got lucky with donation raising so I could rent a small apartment, though that money has dropped off significantly in the last three months. And now all I can do is hope to be given a chance to plead my case to a judge. And hope that the judge sees all my medical records, emergency room visits, chemotherapy sessions, unending doctors trips, medications, and severe medical conditions, and WANTS to help. That’s all I can do. Wait.

Meanwhile, the state is giving social security to BMW driving women with newly lacquered nails, and Prada handbags, who shop at Costco with their EBT card and buy trays of filet mignon and pounds of shrimp for their bbqs. Trust me, they exist. I’ve seen them. What’s worse? I’ve heard them. Bragging about what they can get from the state.

Ugh. Makes me sick. While legitimately sick people are out there suffering because the state is “helping” too many people already. Or unemployed mothers with mouths to feed who live in tents at Kakaako Waterfront because there are housing shortages and those who can’t pay end up homeless while healthy, lazy people who don’t want to go back to working, enjoy their housing benefits.

The system is whack. The system is corrupt. And all we can think and say is “Why them? What do they do that gets them what they want?”

Well at the end of the day I can wonder all I want, but I remain who I am. I have no guilty conscience because I don’t use people or the system. I wait patiently for my turn, to show them who I am and why I need help. I have to trust that one day someone will see my case and help me. I just have to have faith. It’s hard. But I’m not me without it.

 

 

 

 

If you like to help me with raising donations to pay for my rent, bills, expenses,  please visit my page here. Thank to all who have supported me through this new part of my life.

 

Is homelessness their choice?

I had an interesting confrontation yesterday with a man in a wheelchair as I was waiting to meet friends for breakfast. I was standing on the sidewalk looking for my friends, as I had arrived early to request a table as they didn’t take reservations. It was as I was waiting that I was approached by a man in a wheelchair, who said hello. At first he seemed chipper and friendly, and I had no assumptions of him being homeless. He seemed surprised that I said hello back and continued on by asking how my day was.

Well, yesterday I woke up with minimal pain and was in a great mood after having had a solid 8 hour of sleep, something I hadn’t had in months. I told the man I was in a great mood and he stopped pushing his wheelchair along and clearly wanted to talk. He appeared harmless so I didn’t see any reason to avoid him. He stated that his name was Kim and that he was in fact homeless.

Kim’s appearance was cleaner than most homeless people I have encountered here in Hawaii. Our state has had a very serious problem with the increasing number of homeless population and we are recorded to be the worst in the country. When encountering many of them they are often unwashed and have a very bad odor from their unhygienic ways, but this man in front of my had his hair and beard brushed, his clothes appeared fairly clean, and he didn’t give off a bad smell. In fact I would have never guessed him to be homeless if he didn’t tell me.

In our conversation he told me how he has been living. He goes to a local church everyday for what he called “guidance”, he eats all his meals at a place called the River Street Mission, and he said he takes a shower everyday at the beach. At night he slept in his wheelchair in parks.

After telling me about his life he went on to say he wished he had a magical genie lamp and that he would ask for three things. He repeated this litany several times to me. Kim wanted more income, a wife to take care of him, and to work again. Upon hearing this I asked what income he had now and he stated that he received partial social security from the state in the amount of $700 a month. But that “crazy people” often stole the money from his pockets while he was sleeping. I asked him why he kept the money in his front pockets if it kept getting stolen there but he didn’t want to answer. He told me because of the thefts he was often hungry and I asked if he thought of applying for food stamps. In his situation he would surely be given them. But his answer was that he didn’t want to “wait in that office”.

Well that was a surprising answer. If you were starving and homeless wouldn’t you do whatever it takes to help yourself? And you have all the time in the world to wait in that office. Where did he need to be??

I offered him a second suggestion of keeping his money in his back pocket at nights when he slept. It was unlikely someone would push him out of his chair just to see if he had anything in his back pockets. His money could be safer this way. Kim’s response to this was “that’s too uncomfortable”. I’m sorry, but are you kidding me?? Would you rather someone steal your $700 than sleep comfortably??

He then restarted his litany of wanting a wife and more money and this is when our conversation took a turn as he started to get more aggressive in his statements. I could see he clearly had some form of mental illness as he stated he used to be a hostage negotiator for the Hussein family in the 70s and often dined with the Bush’s at the White House. Eventually I said my goodbyes and went inside as I could do nothing for this man. But the entire conversation made me think. In fact it stayed with me all day and well into the night.

I understand that for many homeless they do not have too many options. They either don’t have friends or family, have been down and out on luck and lost jobs and housing, and many suffer mental illness as Kim did. But I have to wonder how many of them really try to better their situations. Last year I too faced homelessness. I didn’t have any friends or family I could stay with any longer. Upon realizing this, however, I worked hard to not let that happen. I started a donation page that eventually paid for six months of rent on a small apartment. I also have been receiving food stamps and financial aid from the state for almost two years now. Anyone can apply, and they give more money to the homeless and those with critical situations.

I wonder how many of these homeless people who complain about their destitute situations actually try to better themselves. It takes just a day to go down to that state office and apply. Sure it’s tedious, but you leave with financial help, albeit small, but help all the same. Even $100 a month could still be helpful. And I know a family with three kids that receive close to $600. If you’re in that bad a situation with no food, why wouldn’t you help yourself and your family by trying to get aid that the state so willingly gives? And if you have a medical condition or children the state also gives financial aid.

I may have a better situation than most, it’s true. But I worked hard to get it. I asked everyone I could possibly ask for help. I swallowed my pride and I did things that were hard. But I had to to survive. I receive food stamps and financial aid from the state in very small amounts. The financial aid doesn’t even cover my bills, and I have to rely on the charity of others for necessities like toilet paper and toothpaste. I’m still trying to collect donations for rent even though I rarely receive any these days. My days are numbered in my apartment but you better believe I will do WHATEVER IT TAKES to keep that roof over my head and the food on my table. Comfort be damned.

Now, I’m not saying that all homeless people are like Kim in that wheelchair. I have no doubt that many suffer from illness that probably keeps them from mentally being able to look after themselves. But I also see those homeless encampments like at the Kaka’ako Waterfront where there are 300 people set up in tents and pan handling and begging for money and food. I wonder if they have done all they can to better their situations before just resorting to begging. I’ve heard many homeless complain that they deserve better and that they are entitled to more. Well, that may be true for some. But how many of them are actively looking for work, or getting down to that state office and asking for help from the state? Are they trying to help themselves or are they just expecting handouts and a life for free?

Ive been really lucky for sure. But you better believe Ive worked hard to make that happen. I have no genie in a bottle, no all powerful deity helping make my dreams come true. If I want something or need something I work to get it. I exhaust all my options before giving up. And I have to honestly say that I haven’t gotten to a point where I’ve given up yet. My hard work has paid off. I’ve asked for support and been given it. I’ve applied for everything I need and have reaped the benefits. If I can do it, why can’t they?

 

 

 

If you would like to help support me financially or otherwise please visit my donation page: Christine Lilley’s Life Fund. Or message me at sixthousandsteps@gmail.com

It’s not my job to convince you that I’m sick

Everyone in my life knows that I’m sick. Everyone. It’s not one of those well-known illnesses that people shrug off, like diabetes, but arthritis is still fairly common, especially Rheumatoid Arthritis. 1.3 million Americans have Rheumatoid Arthritis, and women are 2.5 times more likely to get it than men. Apparently it’s rare for women to develop symptoms earlier in life and the disease usually sets in between ages of 40 and 60. Not to say it doesn’t happen to women who are younger…. RA can happen at any age…. clearly.

And so far there’s no cure. Sure there are tons of “treatments” and drugs to help slow the affects of the disease, even some that prevent further damage, but no cure. And like other diseases, there are different levels of RA. Not every patient is on the same pain level, or are taking the same medications. I’m often told by people that they know someone who has RA and most of the time “they are fine”. Well, that’s great for your friend. I’m glad they aren’t suffering like some of us do. But to be clear your friend and I are not the same.

It’s like someone saying “I have cancer”, and being told by another person, “Oh, I have it too, we’re the same”. There are so many types of cancer and within those types there are different stages, just like with RA. So, it can be pretty insulting to hear constantly that people have ‘heard’ of my disease and know exactly what that means. To clarify, you may know the definition of Rheumatoid Arthritis, but that doesn’t mean you know what goes on in my body.

Truth be told, I’m really exhausted constantly defending my disease to others. Yes, defending  is the word I want to use. I feel like I am continually justifying my illness to others because they either don’t believe me that RA  is as serious as it is, or they think I’m exaggerating. Mostly it’s because they’ve known someone with the disease that have either had a much less aggressive strain, or they don’t truly understand how bad RA  can get. Let me be clear when I say that RA can kill you. Thousands die every year from Rheumatoid Arthritis. Some die through infections that were contracted through our severely weakened immune systems, others from excruciating pain and immobility caused by our disability. The point is that Rheumatoid Arthritis is a very serious condition that should not be taken lightly.

The reason I have to defend my disease so often I feel is because people only see me on my good days. I don’t like friends and family seeing me when I’m very ill, so you won’t often see pictures of me on social media when I’m like that. I only post when I feel good and feel that I look good. I don’t want people to see me when I’m in severe pain and pale and wishing the pain would make me pass out so I don’t have to deal with it. But now I’m thinking I should post on those days because people seem to think I’m doing just fine. In fact the other day when I was telling a family member that I’d had a good day and was able to get out of bed and get some exercise they told me I should start working again in that case. Ok, just because I had one good day where my pain was bearable within a sea of horrible days where I felt like death, does not mean I should rush back to work. Can’t you just be happy with the fact that I had a good day for once? And deal with the reality that I may not go back to work for several years? My reality is that I choose to share the good news only with people because no one wants to hear if my day/week/month sucked. But because of this I now have to defend the fact that yes I am legitimately ill. Still.

So I guess I’ll be posting more “real life” pics and updates from now on. Apparently posting that I’m having a good day only makes people think I’ve miraculously found remission. It’s a great idea I do admit. But I’m sorry, it’s very much not my reality. From now on, you will see my reality much more. You have been warned.

No, Not Really

“At least you’re lucky to be alive.”
“You should feel better that you get any medications at all.”
“You should be grateful for the air in your lungs.”
“You’re lucky you have a roof over you head and food on the table.”
“You would feel better if you pushed through the pain.”
“If you lost the extra weight, you wouldn’t be as sick.”

NO, NOT REALLY.

This morning I woke in just enough time for my head to make it to the toilet. As I watched the yellow bile expel from my body, in painfully violent waves I might add, I can promise you that I wasn’t thinking “I’m grateful”.

When I looked into the mirror after the fact and saw my paled skin, the dark circles under my eyes from painful sleepless nights, my double chin and fat cheeks known in the medical world as Cushingoid, a result of long-term steroid use; I did not think “I’m lucky to be on these medications” and “surely if I went on a diet I’d be cured in no time”.

I’m sick.
I’m dying.
I wonder if people in my life actually realise that fact, or accept it at all.

This week I found out that my insurance company decided to no longer pay for my treatment plan. A plan that my doctor argued was integral in my survival and chances of remission. When I called the company angrily to ask why, I was given a lame and generic answer, their statements only divulging that they deemed my treatment “expensive”.
So what I hear you saying is that my life isn’t worth the treatment that will save it? Gee, thanks Big Pharm, kinda always thought you needed LIVE patients to make money off of.

Do I sound angry?
It’s probably because I am.

I am so tired of being in pain.
Of waking up every morning wondering what my body has in store for me. Will I be nauseated and vomiting? Will I be in so much pain that I can’t move?

Do I feel lucky?
No, not really.
I feel anger. Rage. Helplessness.
I feel alone in a sea of individuals who think they know exactly what I’m going through.
They don’t.

Every day I hurt.
Every day I cry.

You think you know what it’s like.

No, not really.

Definitions


It seems to me these days that everyone has their own definitions of certain words. What may have meant the same thing to all of us a few decades ago, does not necessarily mean the same thing now. It’s all left up to interpretation now.
For example, the word “friend” to me means someone you’ve known personally for awhile, whom you spend time with, talk with, have fun with etc. But to someone else who maybe has 3000 “friends” on social media, that term could just represent one of many random people in their lives that follow their activity.
In this new world driven by social media friendships, online communities, bit coins used as currency, politicians and movie stars acting as gods, etc, we are a world changed. And if you choose not to evolve with it, you are or will be obsolete.

 

For me, however, my definitions have not changed much through the years. Sure, I have evolved with the best of them. But I still practice the manners I was raised with, and live my life on a considerable moral high ground. I can tell right from wrong, and don’t need the world wide web or Fox News to tell me how to live my life. I stay away from reality television and Hollywood gossip, and spend a considerable amount of my time reading, doing crafts, and supporting my local real-life communities.

Friend, to me, means a person who I have considerable respect for. Someone who I have met personally and have spent time with. A person who I talk candidly with, share life stories, laugh with, and enjoy quality time.

Family. This word has changed a bit over the last two years, the years of my disease. The word ‘family’ represents a person or persons who support and love me unconditionally. They don’t have to be blood related, and I do not have to have known them all my life. In fact we may have only been family for less than a year for the person to earn that title. Also do not get me wrong, ‘family’ is not something that is earned. The people in my life that I regard as family have simply shown me that they are there to stay. I regard them as family because I know I can always count on them. They are there through thick and thin. They’ve been there at my lowest points, when I’ve had nothing, been nothing. They’ve seen me through my worst hospital days, the days when I thought this was it, the end. They reach out over phone calls, emails, and texts if they can’t physically be with me in my time of need. And I reciprocate with the same ferocity of love and respect.

 

Support. Now there’s a word that seems to have changed a lot recently. As you may recall, I have already spoken many times on this subject. So I will not be a broken record today, and I will not get frustrated and use this post as a platform to rant. Support to me is the original definition of the word,

” 1. To endure bravely or quietly, 2. To promote the interests or cause, 3. To uphold or defend as valid or right, 4. To give assistance to, especially financially; enable to function or act.”

As written in the Merriam-Webster Dictionary.

It’s to help. It’s to lend a hand. It’s to give a shoulder to cry or rest upon. It’s a wall to to lean against. It’s a friend or family member helping out. Or even a stranger or random person on the street. It’s one person helping another. Or maybe many persons. And it should be given freely. My definition of support does not say anywhere that support must be earned. To say that is to null and void the word itself.

 

There are many words out there these days that leave us confused and mystified. We don’t understand the changing of the definitions because the definitions in themselves change so much to suit the needs of whomever uses them. In this day and age we have learned that we can change everything and anything to suit our needs. That very idea sickens and saddens me. But what can we do but go along with our lives and try to live them as honestly and honorably as possible.

I look forward to the day where I may look upon a person and wonder what definition they fit into for my life. Hopefully they will just be.

 

 

If you would like to help ‘support’ my life financially please visit my donation campaign page at

Christine Lilley’s Life Fund

Or you can write and share your opinions and stories to

http://sixthousandsteps@gmail.com

 

Thank you

 

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

I Want To Live, Not Just Survive

“I want to live, not just survive.”

I saw that on a quote board on Pinterest the other day while looking for a clever motto for my business cards. My medical psychologist had suggested I order some cards to help promote my donation site as well as my blog, and I had found an extraordinarily cheap deal on Vista Print. 250 two sided colored cards for $12? Gee, um, ok!

Anyways, the back of the card had space for a motto and I wanted to find something inspirational for myself, and motivating. When I saw this one, I knew. It’s exactly how I feel. It’s one thing to just overcome my disease and illness, it’s another to be able to live my life with purpose and happiness again.

I’ve been thinking about this a lot recently. In my mom’s letter to me, that I posted on my blog earlier in the week, she wrote that she gets sad when she sees families together, or mother’s walking their strollers. Because she knows that’s an unlikely future for me. My doctors have told me I can’t have children. Physically, yes I could, but to have them I would have to go off all of my medications and treatments completely, which in turn would kill me.

So no family from scratch. Sure I could find a man who already has kids from a previous marriage, or we could adopt. But to have enough energy to raise children, I would most certainly have to be in remission from my Rheumatoid Disease, and no longer fighting cancer. Basically, I’d have to be well again, and I’ve been sick for so long that I’ve forgotten what well feels like. What does no pain feel like? What does it feel like to make it through the day without a hot flash? Or to exist without a daily three hour nap?

 

I rented a Redbox movie last night due to free coupon I received via email. (I know, I’m cheap. Only using the service when I get freebies. But even a $2 movie is a luxury these days.) Jupiter Ascending. I liked it a lot. Prob cause I’m a sci-fi geek and love anything done by the Wachowsi’s, but also because the special effects kicked ass. Anyways, of course to capture a broader audience they dropped a love story in the mix between the heroine and her sexy hero. Not too mushy, thankfully. But due to my strange mix of emotions lately, I found myself crying while watching it.

See the issue that I’ve been dealing with recently is that I’m going to be 34 in a few months, and I’m still single and alone. Throw a chronic disease into that mix and you have the perfect storm of depression. Dating is hard enough when you’re a regular healthy person. I’ve had my fair share of long term relationships that have clearly not panned out. I’ve been signed up on two online dating sites on and off for the last four years, with no winning results. Although I now have at least three really awful and yet entertaining stories of bad dates. So like I said, dating is hard.

Since my disease got really aggressive, I haven’t been able to keep up with my dating sites. I took a good half year break for awhile as I tried to find my footing with chemotherapy and my many other treatments. But I’m still alone. I have no one to come home to after a bad night in the ER, or receiving another shitty diagnosis. Sure, friends and family are supportive, but it’s not the same. We all know it. I crave the intimacy you have in a significant other.

And now as I get sicker and sicker, it feels like a future with someone is further and further out of reach. Yes, I’ve been on a few dates here and there, but in the course of being honest as soon as I tell someone of my condition their demeanor changes. No one wants to be with someone they view as broken. And it doesn’t matter how much I tell them about my optimism or activity levels. Once they hear “sick”, it’s over.

I find myself wishing I had spent more time when I was younger looking for the right person. Wondering why I substrate it seriously, and of course knowing it was because I thought I had more time. Time. That’s the real issue at the end of the day. I wonder if that’s what deters people. Their conception of loss of time with me. I mean children are off the table before we even get started. They probably see my winced and hear my clicking joints as I get up and down in front of them. I understand that a worse case scenario probably runs through their minds as they think what a future with me could be like. Wheelchair maybe? Endless doctors visits? Pain?

That must be hard for them to see and imagine. But that leaves me alone. I wish someone would look at me and see ME. Not my pain, or my disease, or what my future may hold. Just me. The fact that besides my chronic condition, I love life. I love cooking and baking. I’m a foodie, I love tasting and eating out and having food adventures. I love walks on the beach and swims in the ocean. I love travel and adventure.

I am not Rheumatoid Arthritis.

That is only a part of me. Look deeper and you will see that.

What is the point of going through all these drug trials, chemotherapy, biologic injections, steroid weight gain, losing work, being homeless, having to go through all of this hardship and stress… what is the point of making it to the other side if there is nothing on the other side?

I want to live through this, not just survive it.

I want my disease go into remission. I want to be healthy again. I want to be employed again. I want to be financially independent again. Take trips, and travel through my bucket list. Find a life partner and share my happiness with them.

If I can’t have that, then going through all this pain and awfulness isn’t worth it. I want to know that there is a light at the end of this tunnel.

I want to LIVE, not just survive.

 

 

Please help me by donating to my life fund at:

Christine Lilley’s Life Fund

A place to rest my bones

I’ve been wondering how many people are out there with a situation similar to mine. What do people do when their options run out? I mean we are not all blessed with families that stand behind us 100% and help us when we are down. If that were the case, the homeless population in Hawaii would be non-existent as opposed to the serious issue that it actually is.

According to Hope Services Hawaii there are 12-15,000 people that are homeless at some point of the year. And at least 6,300 of those people are homeless at any given day. Of those 6,300 homeless people, outreach services in the state of Hawaii were only able to help 1,770 individuals in 2014. 48% of those 6,300 are single individuals, and the rest are families with children.

To be honest, for a long time homeless people really bothered me. I was disgusted by the unwashed men and women that littered the streets of Waikiki, begging for money and food. The homeless communities on the North Shore and Kapiolani Park, or even the groups that line the sidewalks in Kaka’ako and Aala Park, setting up their “homes” made of tents, overturned shopping carts with tarps attached, and fences made from cardboard furniture boxes.

I didn’t mind giving food or water to those who stood at intersections with a sign pleading for help, food, and or places to stay. People who don’t want to be in the situation they are in, and will do anything to get out of it. In fact when I was still employed I would buy a sandwich once a week for a man that frequented the parking lot of the 7-11 down the street from my office. He was always very grateful, polite, and thankful. But I didn’t have sympathy for the people begging for money from tourists, expecting something for nothing, especially if it looked like they were high. A year ago a kind friend of mine went into a store and bought a sandwich for a homeless man she saw sitting outside. When she gave it to him he didn’t say thank you, and verbally insulted her for not buying him a drink, or giving him some spending money. I won’t feel pity or sorrow for people like that.

Facts about homeless people were never very interesting to me. I loosely followed the news stories on what was being done about the growing epidemic. Scoffed at the bills they attempted to pass about making sleeping on sidewalls illegal. But these days, I can’t help but wonder if that’s going to be me soon? Am I going to be living out of a box because of the “inconvenience” of my illness for others?

For the first year I was out of work, I stayed with two sets of  friends who luckily enough had  extra rooms in their house to spare. I was so grateful to be able to have that nice warm roof over my head, hot showers in my own bathrooms, and a private place for my two cats and I to call home. Both sides of my family knew of my growing illness and were happy to know I’d found accommodations. But as the years end loomed closer I knew my time was running out.

I’ve always been very independent. It’s why I worked out my housing issue on my own for as long as I could. I hate asking for money, and I don’t like the feeling of owing something. Debt, in any form, makes me very uncomfortable.  But when I had literally exhausted all housing options on my end, I knew I needed to ask. As stated before, my mom has been my sole caretaker throughout the majority of my illness. Sole caretaker meaning she attended EVERY doctors appointment, sat with me through all medical treatments (including several rounds of chemotherapy), helped pick up my prescriptions, came to the emergency room visits, let me stay in her house when I was recooperating from hospital visits, helped me organise my medical records, documents, and bills, and most importantly stayed by my side through my spinning wheel of moods. Having already done all of these things for me, it was very hard to ask for more help.

This is where we ran into a bit of a problem. My mom is one of the most caring, genuine, and loving women you will ever meet. She will go above and beyond the call of duty to help people, including strangers. And had she been living alone, wouldn’t hesitate for a second before telling me to move in with her. She would take care of me forever if she could, I know. However, being the beautiful and loving woman she is, of course has a partner to share her life with, and when you share a life you make sacrifices and compromises. And in those shared choices, there is no room for me.

So, swallowing my pride and stubbornness, I approached the other half of my family and asked for help. What happened as a result of that is not something I’m able or willing to talk about just yet. Another day, another story. But a clear NO all the same.

Which brings me back to my solid fear of homelessness. Because of my worry I decided to start a fundraiser in my name as another attempt to keep me off the streets and safe and dry. I hope and pray that I continue to receive more donations that can help me get to my goal. In the meantime, I wonder. I worry. I sit and I cry. How can a string of horrible events keep happening to good people. Was I Genghis Khan in my former life? Hitler? Mussolini? What did I do to deserve this?

I look back at my life and I don’t understand how this happened? I left home at 18 and have been independent and fruitful ever since. I’ve gone to schools, worked many jobs, paid my own rent and bills, travelled all over the world on my OWN dime.

And yet here I am at 33… I have a chronic debilitating disease with no cure. I have cancer. I have no money. No home. And my greatest joy in my life is my two cats who don’t care about any of this shit. They love me, they sleep on me, and they remind me that I’m still alive. They’re entire life is seeing me every day and making sure I feel loved, and that of course they get the necessary amount of pets.

But I can’t help but wonder..  how many others are out there that feel like this? And what the hell are we supposed to do? Just keep swimming?

Sure, I’ll swim. But gosh do I hope when I get out of the water there’s a towel waiting for me, and a hot shower, and a place to rest my bones.

My fundraising website:

http://www.gofundme.com/sixthousandsteps