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Personal Purgatory

I’ve been doing a lot of inner reflection lately, and it seems to me that those of us living with chronic illness do a lot of destructive thinking. I don’t think it’s on purpose either. I’m not talking about the inevitable depression and grief that comes with living with chronic disease, that’s a whole other can of worms… I’m talking about the depression we let ourselves slip into.

Rheumatoid Disease is shitty enough on its own, without having added Osteoporosis, Lupus, and Lung Disease to the mix. While I have accepted each of these as they have come, and deal with my diagnosis the best way I know how (smiles and realistic expectations), I find myself under a rain cloud. But it’s a rain cloud of my own conjuring.

There is a point that I think we all go through where we have had enough. The pain has become too great, or we lose support, or medical help, or all of these things, and we start to feel like we want to give up. I’m not talking about ending our lives, but more of an acceptance of defeat. At one point in our illness we accept that it can’t or won’t get better. It seems easier to accept that our disease has won, not only by conquering our body, but also our will. 

I realise that recently I have let myself get to this point. And I really do mean I let myself. At some point my loneliness joined forces with the disease destroying my body, and they decided to get married. And instead of dealing with my illness while trying to stay positive, I let myself slip into depression.

See, most people think we (the chronically ill) keep to ourselves because we want to be alone. When most of the time the reality is that we just don’t want to bring anyone down with us. We keep our feelings, pain, and sadness within, convincing ourselves that it’s better this way. In my case, I like to take it a step further by emotionally cutting myself off from others. I guess my logic is that I don’t want anyone feeling sorry for me, or treating me like I’m broken. But in doing that I end up putting up walls, especially around my heart.

I haven’t been in a romantic relationship in a long time. I’m talking years. Wanna know why?

I wouldn’t let myself. 

In hindsight I now see that my logic was really flawed. Because in keeping people at arm’s length, I not only hurt myself, but others around me as well. I started to use my disease as an excuse to not live my life. Not in the giving up sense, but I did throw away opportunities to have meaningful relationships with some great people because I justified to myself that I was saving them from dealing with my health issues. In truth, I was just building my own personal  purgatory.

It’s taken me a few years, but I’ve recently seen the light. Maybe not the light at the end of the tunnel, but at least a flashlight that will help me find my way. I realise now that letting people in is important. Sharing how I feel is important. It may not always get you the results you want, but it sure as hell is better than keeping it bottled up inside. I need to not let my disease define me as a person, and I have to remember thank don’t have to walk in this life alone.

No matter how many days I have left, mine is a life meant to be shared.  I will climb out of the purgatory of my own making. I will remember I am strong, beautiful, and worthy of happiness.

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You’re not sick enough

For over four years I have allowed myself to entertain the idea that maybe one day I would be well. It would usually come after periods of having little to no pain flares, or a burst of energy after weeks spent bound to my home. Small fantasies if  you will, of seeing myself hiking again, or being able  to travel more of the world like I’d always wanted to. And then these visionary bubbles of hope would be popped every time a doctor would tell me I was getting worse, or that I’d procured another illness, to add to the ever increasing pile of shit I was already dealing with.

One of these frustrating moments was just a couple of months ago. It was on the same day that my rheumatologist told me I could re-start Remicade, a drug that had started working for me just before I left Hawaii. In hearing this news I was in such a great mood. Having only received three infusions before leaving the island, the drug had already produced amazing results, doubling my energy, and lessening my pain flares. I was stoked.

However, that excitement was short lived when my doctor informed me that recent test results showed I had developed Pulmonary Fibrosis, a lung disease that can be fatal. It turns out that the severe inflammation that Rheumatoid Disease caused in my body had produced scarring on my lungs. It wasn’t yet determined how bad it was, and I was sent for more testing including blood labs and x-rays. On top of that it was also concluded that I likely had Lupus, another autoimmune disease, that my doctors had suspected for many years.

I was devastated. Why was it that every time I started to feel like my disease was turning a corner, I’d turn that corner and walk smack into a brick wall?

Depression came on swift wings with the winters rain, and I started to seriously doubt the years I had left. Research came and went. I talked to my therapist in what seemed like a never ending loop of what if and why me‘s. Every part of my life looked gray, as if I was wearing Eeyore glasses.

But just as nature surprises us with change, so did my mood. The storm in my head began to lift, and with my Remicade infusions, so did my heavy heart. I hate to sound like a cliche and say that my rose colored glasses faded away and every thing seemed okay again, but that’s really what it was like. Without knowing how or why, I found my happiness again, and moved forward at a surprising pace.

I started to exercise a lot more, having finally found the energy to do so. I took long walks that went miles, and explored areas I’d only known as a child. In one of these walks I stumbled across a Cat Lounge, an awesome place where you could literally spend hours petting cats, and resting as they took naps on your lap. Some days, I would just walk up the hill behind my house to a little cafe, sitting by the window sipping hot chai lattes, and writing for hours.

With this burst of new energy, I started to see friends more often, even venturing out more on weekends. For the first time in over four years I was really feeling like my old self again. I even went on a couple dates, and while none of them panned out, it felt good to be out in the singles world again. Energetic, confident, and hopeful.

Now, you’d think that this lovely change in my attitude and physical self would have been celebrated by others. I figured after years of hearing my depression over my illness, lack of enthusiasm for life, and the dreariness of daily pain, that friends and family would rejoice with me that I was starting to feel a little better. Especially with the fact that I had been able to lose 80 of the 90lbs gained on steroids and pain management medications. I mean I wasn’t cured (there is no cure), but it felt good to feel good, even if only for awhile. I knew that there could be periods of wellness, followed by periods of illness. But I wanted to embrace the wellness as often as I could, and make the most of it, while I could.

To my surprise, not many in my life shared my zest in this. You know that phrase “misery loves company”? Well, this was a cracked out version of that. I received a lot of “Well, don’t get your hopes up”, “You’ll probably be sick again next week”, or my favorite not favorite “You could still gain the weight back”.

For fuck’s sake!

Look, I’m quite aware that I’ve been sick-its my body! I’m quite aware there is no cure-I have seen more than a few doctors! And I am beyond aware that my illness varies from day to day, if not hour to hour. But do you understand that when you have a chronic illness that you’ve been told may very well kill you, any day or moment where you feel genuinely well needs to be enjoyed? Can you please let me relish this time where my joints aren’t screaming at me, and I don’t want to cry at the loneliness, and I can just be happy if only for a moment?

Its like I am not allowed to feel well, even if its for a short while. I am the sick person, the sick friend, the sick family member. If I display even a hint of joy, energy, or confidence, then suddenly its this big deal. As if maybe I was faking it the whole time-because yeah, I just faked four years of excruciating pain and fatigue, for sympathy. Instead of letting me be happy, I am berated with “I guess you’re not that sick after all” or “I thought you were too sick to get out of bed”.

For fuck’s sake.

I am NOT sick 24/7. Yes, sometimes I can be sick for days and weeks on end. Sometimes it feels like my entire life is me standing under a rain cloud that follows me everywhere, except instead of rain and thunder, I get new diseases, cancer scares, and Osteoporosis. That sometimes its like I’m in a crowded room screaming and no one can hear me or cares.

So you’d think that when I am feeling good people would be happy? Nope. In the land of Chronic Disease, if you’re not sick and miserable all the time, then you’re not really sick. Or you’re being too optimistic and you need to be brought back down into the ditch of incurable misery, and stay there.

Well… I say NO.

I am not sorry that I don’t look sick all the time. I am not sorry that I don’t feel sick every moment of every day. I am not sorry that you can’t be happy that I can get a moment of peace every now and then. I am not sorry that my new medication makes me feel better some days. I am not sorry that I am not the vision of sickness that you need me to be.

Some days I feel bad, really bad. Some days I feel like I want to give up and die, seriously. There are days when I wonder how I’ve made it as long as I have. I often wonder if it would truly be better if I let my diseases consume me. Yes, it does get this dark inside my head. This is life living with chronic illness.

BUT…

On the days where the pain wanes, and the sadness cloud clears, and I feel like I’ve woken up like a normal person… let me have that. Enjoy the pain freedom with me. If I’m in an optimistic mood, be optimistic with me. Be happy with me, if only for awhile. Don’t make me feel like shit for wanting to spend one day, one hour feeling like a normal woman. In a life where I don’t know how many normal days I have left, let me appreciate the time given.

Let me be okay, if only for awhile.

 

 

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.

It’s not a competition

It recently occurred to me that a lot of my friends and family often belittle their own health issues in front of me out of guilt. I’ve done it in the past as well, so I recognize the action. You’re talking with someone who has a long term condition like diabetes or cancer, and maybe they experience constant migraines or something similar, and you start complaining about an awful headache you got the other day. Suddenly you clamp your hands over your mouth, mortified that you’re complaining about a headache to someone who not only experiences them all the time, but to an excruciating degree. It happens. We’ve all been there.
But only until I was the one in the chronic illness drivers seat did I realize that I shouldn’t have ever had to feel guilty for that headache, and neither should you. It’s not a competition, and I’m certainly not winning just because my illness is worse than yours.

Everyone who knows me, knows that I’m sick. And knows that I’ve been sick for quite a while now. I don’t hide my disease, nor my symptoms. Everyone knows that I suffer from chronic pain on a daily, if not hourly basis. Those closest to me know the severity of my disease and the toll it takes on my body. But just because I suffer, it doesn’t mean I think I’m the only one. I know there are hundreds of thousands of people out there that are sick, suffering, even dying. And you don’t have to be suffering or dying to want a little sympathy either.

Having a really bad cold, with stuffy sinuses and sneezing and coughing, sucks. Having a really bad headache sucks. Having a sore throat totally blows. Getting the flu is a nightmare. Cutting your hand or cardboard stings and is awful. I’ve had all these things happen to me and I know how shitty it can be. Life just hits us with a bus sometimes and it’s unavoidable.

So don’t feel like you have to hide your pains or illnesses from me because you think I get it worse. It’s not a competition on who feels more awful. Please don’t hide how you feel. Share your aches with me. Tell me about that awful paper cut. Let me support you, and make you a cup of tea for that terrible headache. We all get sick, and hurt, and feel crappy at times. You are not any less important because you don’t have a chronic illness and have 14 doctors on speed dial. A lot of you support me when I’m down and out, which is more often than not. Let me help you when you’re not feeling so hot either.

It’s not a competition. It’s just life.

If you’d like to help support my medical efforts and financial struggles, please visit my donation fund. All help is appreciated…

Christine Lilley’s Life Fund

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

 

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

 

As I watch my mom garden…

As I watch my mom garden, I think of all the activities I miss out on each day.

I watch the way her hands wrap around the weeds tightly, pulling their roots from the earth. I watch as she kneels on her foam mat, the color blending with the grass around her perfectly. Her face revealing her content at a chore well done.

As I watch my mom garden, the smell of the fresh dirt and cut grass reminds me of what I once was. I was once active, healthy, and mobile. While you would never have found me gardening, a hike, a walk, or a swim wouldn’t have been a stretch.

As I watch my mom garden, I remember what my weekends used to be like. They were filled like water to the brim of a glass with beach trips, picnics, potlucks, movies, and shopping expeditions.

But now I sit on this garden chair and look at my swollen knuckles and sigh. Gone are the days of invites, the calls, the texts, and emails. No cheery excited voices asking, pleading, to join the party. The only pleading going on here is the sort inside my head, hoping and begging to not be in pain when it’s time to stand.

As I watch my mom garden, I remember the once upon a time days of summer. The melting cones of shaved ice, the brightly colored bikinis on my pre-steroid weight body, the flirtatious sounds of boy meets girl, and the obnoxious barks of dogs gone wild in the park.

As I watch my mom garden, I remember a life I once lived, and can only hope I’m given the chance to live again.