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

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

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

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

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

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

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

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

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

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

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

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I’m not a superhero, but it’s scary all the same 

It’s nearing the end of 2016, and it seems like people are dropping like flies. Carrie Fisher died this week. Princess Leia, a superhero hero to one and all, one of the originals. She empowered women and girls alike, showing that we don’t need to be “saved”, and that we can have kickass adventures in life on our own. And just days later her mother, Debbie Reynolds, followed her demise. Just last week pop icon, George Michael, died as well. This was also the year that took Prince. 

Superheroes these people were. But the real life kind. George Michael gave millions of his earnings to the needy. Prince donated time and money to foundations as well. You could say they all lived good and meaningful lives. Their deaths will all be remembered, their lives immortalized in history and our minds.

That’s what we do with famous people. We build them up to be larger than life.

I will always remember this poster I saw on a directory stand at a mall once… It’s said “You can probably name every single American Idol winner, but do you known the names of all of your child’s teachers?”

That’s so true isn’t it? We know totally useless information about famous people, probably more than their own families or themselves. Yet we don’t know much about each other, r important people in our lives.

I guess my point is that we dwell on things that don’t really matter. Things that aren’t important or necessary or helpful to our growth and intelligence. And while focusing on nonsense we forget about what’s really important, or whom.

You know what came to my mind when I saw that Princess Leia died? ‘Millions will remember her death, but I wonder how many would pay attention to mine?’ 

I’ve tried to be as honest as I can to friends and family about my disease. I try to explain my symptoms, or what the doctors say, or what we know. But either it goes in one ear and out the other, people don’t really believe it to be true, or its too intense to comprehend at all.

Mom knows. Or at least I think she has a pretty good grasp of the reality of the situation. Even more so since my therapist sat her down and really made her see. I can’t imagine what must have gone through her head that day. Was it like everyone else I tell? Incomprehension? Sudden, gripping fear? Denial? 

It’s just like the Christmas season and Santa Claus… It’s all a myth, not really real right? Or the monster under my bed isn’t really there if I close my eyes real tight and pretend it’s not there… They’ll count to 1, 2, 3, and the boogie man is gone and all is right in the world again. Rheumatoid Disease doesn’t work that way…

You can’t pretend it doesn’t exist. And it won’t go away if you act like it’s not there. It will creep on you slowly, getting worse, and worse. Until one day you’ll look in the mirror and a poisoned and pale stranger looks back at you. Her hand are deformed, her back is hunched over, water and steroid weight clinging to her frame. She is not the beautiful woman who use to live in the mirror, and her weight won’t go away with diet and exercise and a can-do attitude.

Tonight Mom called me crying. She was sad for Debbie Reynolds. That she had to watch her daughter die before her, and that maybe the heartbreak of it, took her life as well. I think it was the first time my mom truly grasped the reality that she could outlive me. I’ve known for some time now. I’ve dealt with the depression of it, the sting of reality, the hard lump in my throat that I cannot swallow away. No parent should have to bury their child, adult or small. But that could be our reality.

I think the biggest issue patients face with Rheumatoid Disease is that people don’t understand how serious it can be. Everyone knows the word “cancer”, and they associate that with the deadliest kind of illness. But cancer isn’t the only thing that kills. And some autoimmune diseases are worse and kill quicker than cancer. Bet you didn’t know that did ya? Just like the Top 10 Billboard Artists, you can name them, but not diseases that kill. 

Well here I am to inform you… Cancer isn’t the only thing that kills. And most of you didn’t even realize how severe my disease was until I started undergoing chemotherapy, which yes, helps other ailments besides cancer. My hair is falling out, I throw up all day long, I look and feel awful. Yes, my disease is as bad as some cancers.

What you don’t know, or don’t want to know, is that I’m on borrowed time. I’ve tried to tell you how sick I am. I’ve asked you to understand. I’ve explained again and again. I post articles, I do research. I ask you to believe. But the Kardashians are more entertaining than a misunderstood disease. Or the latest Star Wars movie, or a new car, or celebrity deaths in the news.

It’s hard to watch anyone die so young, especially one of our female superheroes. I’m not famous, but mortality is the same for me as I’m sure it was for Princess Leia. No one wants to die young. Im not a superhero, but it’s scary all the same. The difference is I won’t be mourned by millions. I only hope that if I do go early, my body would shed light on this awful disease that is intent on stealing my joy. That I could at least serve a purpose for those who come after me, and that a cure will one day be found.

You may think this is a bit morbid. But I guarantee you, it’s only the reality I’ve been trying to share. I wish people would see my disease for what it truly is. I wish people would listen when I explain how very ill I am. I wish they would believe my doctors when they say that I won’t live as long as my friends. I wish people could truly see and understand. And really listen and try to understand as much as they would pay attention to their fave tv series or movie star.

I may not be a superhero, but my health and body are not less important either. I’m trying to stay afloat in a world where I’m drowning in my disease. All I want is for others to acknowledge that I am a person too. A person dying from an incurable disease. I just want to know I have the love and support and understanding of others. 

It’s a lonely reality when you know how sick you are, but it’s not as important as the latest blockbuster, or latest Prada bag, or the car you’ve always wanted. If you it’s a hard reality knowing exactly where you are on a priority list, and half the word sits above you.

 I’m sick. Can I get an acknowledgement please?

The deafening darkness

Blackness. Or maybe it was all a bright white. Maybe there was no color at all. Just silence. Maybe that quiet seemed like it would never end.

All I could concentrate on with pain. It seemed like pain was all around me, infiltrating every bone in my body, every piece of flesh. It was so dark and solemn, everything seemed so far away and out of my reach, and yet it was deafening in the darkness.

Where was this place that I had been brought to? Had I closed my eyes and found the place that I would breathe my last breath? Was this the gate that I was meant to cross? How did I even get here? How did any of us get here? Was I meant to be here at all?

Noise. Shouting, machines whirring, everything seemed so loud. It was too loud. The pain hurt. The noise hurt. I just wanted everything to stop. I was ready for it all to stop…

Vision blurred. I saw people running around me, they’re fuzzy outlines making no sense to me as my eyes opened and closed. The pain. The pain was deafening. I just wanted it to stop. I was ready for it to stop. I just wanted it to stop.

I close my eyes, and left them closed for a while. I opened them again, blurred lines still running about… I closed them. Open. Close. They moved with the time of the beeping machines around me, alerting people to my heart rate as it slowed, slowed, slowed…

Finally, the pain overwhelmed me all at once. My breath stopped, my arms went limp, my body had decided… My eyes closed and all I saw was white. It was everywhere. And I was everywhere. I just wanted everything to stop, and it did. But only for a moment.

Only for a moment. 

Me, Myself, and I

As someone who has a lot of time on their hands, I find myself on social media quite a bit. It’s easy as pie to just tap my phone to see what’s been posted on Facebook or Twitter, or to have a quick laugh on Reddit. Quite honestly, I probably check my Facebook status anywhere from 15-30 times a day. A bit excessive yes I know, but be honest with yourselves, you do it too! Seriously, why don’t you go ahead and count sometime… I bet you’ll be surprised at how often you do it.

I think it’s part of human nature, the incessant desire to never miss out on anything. We want to be a part of everything and anything, and we feel let down if we aren’t “in the know”. This could pertain to anything too, be it sports scores, which celebrity is shagging another, your own friends relationship status updates, or how many potato chips the girl who’s dieting in the cubicle next to yours just ate. We have to know each other’s business, secrets, feelings, happiness, and pain. It’s just the way it is. We are obsessed with information.

My own personal vice is Who has read my blog?

I constantly check my stats on WordPress and Facebook. Has anyone new read them? Did they like what I wrote, did they leave a comment? Do people understand what I’m feeling? Am I making sense? Do they connect with the words on a spiritual level, or a physical one? Or do they even read them at all?

Have you ever noticed that you can post something online like a really long status update that’s a few paragraphs, or a blog, or an article, and people click like within seconds of you posting it? What exactly is it that they are liking? Cause it’s not your post, there’s no way they read it hat quick. So basically they like that you posted anything at all. And then you have no frame of reference on whether someone truly liked what you posted because they are just obsessive “clickers”. Someone posts something and hey are compelled to immediately react to it. Drives me nuts.

But why am I really annoyed by this? I mean, I don’t write my blog for anyone but me. Seriously. I may say that I love checking my stats and enjoy reading comments left, but at the end of the day, my blogs are for me, myself, and I. They are a way for me to express my darkest thoughts and feelings. Because in a way, they don’t feel read until I put pen to paper, or in this case-stylus to kindle. When I see my words, my feelings, my thoughts, well, that’s when they become real. It’s like saying something out loud makes it real for some people, well, writing it down makes it real for me.

It helps catalogue my thoughts, wishes, and dreams. I can always go back through them and remember exactly how I felt on that one day. Just like a diary, my blog is an extension of who I really am on the inside. So maybe my obsession with stats checking is really more about wanting to validate that people around me understand how I’m feeling.

In my last blog I talked about realizing my fears. Actualizing them and understanding how they affect my life and how in reality they have made me who I am today. Before writing that blog I lived in the fear of people knowing what I’m really feeling. I was saving their feelings and making them comfortable by not sharing my truths. And for what? So they don’t have to feel bad about my disease. What a senseless waste of time that was. Why should I hide what was really going on? Why were others comforts more important to me than my own? I guess I realized I was people pleasing, something that I’ve given up in recent days. I learned through putting my feelings out there that I was doing more damage than good. Mind blown.

Life is a journey. We learn new things every day, especially about ourselves. It took me three years to learn to put myself first. That time frame sounds ridiculous when I think about it, but that was my reality. But then I put my feelings into words and made the necessary changes. That’s what my blog helps me do. Realize what needs to change, how I can grow, and make it happen through actions.

Todays life lesson and realization is that social media does nothing for us if we aren’t commiting to being real and being ourselves. You’re not doing anyone any favors by liking every single thing that’s posted, or checking statuses every two minutes. You’re just feeding a compulsion to know information that isn’t necessary for your life. What we should really be focusing on is OURSELVES. What helps us move forward and grow. My life isn’t going to change drastically if I have more followers on Twitter or WordPress. The only thing that should matter is me, myself, and I. How I live, how I learn, how I grow. Everything else is just  fodder. It’s time to remember that I am here for me.

 

 

If you would like to help support me, please visit my page here to learn more about my journey. Thank you.

I can’t hide anymore

“You’re so strong!”

“You’re incredibly brave!”

“What an amazingly strong and independent woman you are.”

“You’ve got this, you can beat it.”

“She’s the strongest person I know.”

“Look how brave and fearless she is.”

“I wish I were as confident and

optimistic as you.”

“You make me feel like a better person.”

 

Pretty nice compliments, huh? Anyone would feel honored and thankful to hear such nice things said about their character. But you know what I feel when I hear these comments and others like them?

Shame. Because it’s all a lie. I’m not confident. I’m not strong. I’m not optimistic. The persona you see me display is a facade, a shell on top of what’s truly inside. And what’s inside is deep seeded fear.

When I first got sick I was pretty cocky and nonchalant about the whole thing. I was naive, figuring I’d get over it soon enough with the right medicinal cocktail. And as I slowly got worse, taking more sick days, spending more time in the hospital, I still didn’t quite grasp what was happening. In fact even after I had to leave my job and apply for Social Security almost two years ago, I still hadn’t really accepted reality.

It wasn’t until about a year ago, after another trip to the ER in the middle of the night, and another series of imaging scans, blood tests, and being poked and prodded by cold fingers, did I start to let the fear seep in. I remember the exact moment that reality hit me actually. It was a week after this fateful ER visit and my Rheumatologist at the time (whom had terrible bedside manner and has since been replaced) had just casually mentioned that they found Lymphoma in one of my tests. My head snapped up, and I looked at him bewildered, sure that I had misheard him.

“Lymphoma..what? What are you talking about?”

He didn’t even look up from his laptop at me, just continued to tap tap tap away on it, and very casually mentioned, “Yeah the ER found enlarged lymphnodes and it looks like cancer.”

I mean was this guy for real? That’s how you tell your patient of two years that they might have cancer?? By not even looking up from your laptop while writing notes, and just throwing it out there like you’re not even talking about the scariest thing a patient could hear but more like you’re discussing what kind of cheese you want on your crackers?!

I sat there staring at him, not even able to turn my head and look my mother in the eye, though I could tell by the palpable energy change in the room that she was in just as much shock as I. I sat there staring, willing him to meet my eye. Finally he did and actually looked confused that I was so upset. I eventually regained my composure and asked all the important questions that were in my head at the time. He answered, mostly helpfully, and gave me the name of an oncologist to book an appointment with. And we left.

Mom went to use the bathroom, and I walked down to my PCP’s office, which was conveniently located at the other end of the hall, and made an appointment to see her ASAP. With every step that I took, every movement, the fear started to bubble. Over the course of the next five minutes my entire medical history flashed before my eyes. Every single doctors visit, every lab test and needle jab, every overnight ER trip, and hospital visit, and time spent in waiting rooms wondering what was happening now. Everything that had happened to me medically in the last two years, it all pumped through my veins, warming my body like the iodine they so often gave me during cat scans.

I made the appointment with the receptionist at my PCP’s office and walked back out into the hall where mom was waiting. And I came undone. I started shaking uncontrollably, sobbing, hyperventilating, barely able to remain standing. Mom stood there and held me, as I leaned against her, using her body as I’ve done many times since then, like a pillar of support. My pillar of support.

It was on that fateful day that I acknowledged the all consuming fear of dying too young.

Its been almost a year since that day, and I’ve had many hard days, weeks, and months, since then. We’ve done biopsies, MRI’s, CAT scans, X-rays, and blood tests. We found a tumor on my esophagus, but it was benign. Then we found chest pain, and fluid in my lungs, so we focused on that next. Then my bones started to break too often, and a DEXA scan found that at 34 I had severe Osteoperosis. Which started the long fight with insurance to get me the medications that would help. Meanwhile my Rheumatoid Disease continued to get worse, my flares erupting more often, my immune system so compromised that I kept getting sick weekly. Then the hot flashes started, and the night sweats and cold chills. It seemed like my body was attacking itself on purpose. Almost like it wanted the struggle to end, forever.

During all of this, I kept a smile plastered on my face. When asked how I was doing, I had an array of standard answers that I would rotate.

“Oh, you know, just trying to stay optimistic.”

“It won’t do me any good to get upset or down on myself. I just gotta push through.”

“I’ll be okay, I’ll get through this.”

Etc. Etc.

If you know me, then you have most definitely heard one of these answers several times over the last couple of years. In fact, you probably think I’m doing ok. That maybe I struggle sometimes, but I’m always so optimistic that I must be getting by.

This is where I have failed. In many ways I’ve screwed myself over. Because all this time I’ve spent keeping people from knowing the truth of my feelings, I’ve also been keeping them from the truth of my disease. They see my smile, they see me “pushing through the pain”, and they think ‘Wow, maybe she’s not that sick anymore.’ I mean I only go out and about when I’m feeling slightly ok anyways. No one ever sees me or visits on a bad day. But to be honest, even if I started to have a bad day out, when I’m around friends and family, would I have told them?

No. I wouldn’t. I’d make an excuse that has nothing to do with my illness or disease, or I’d lie and say I need to leave because I’m feeling tired or I have a headache. I have never left a family event or friends gathering and given the true reason for my departure. Why do I do this you may ask? Mostly it’s because I assume people don’t want to hear it. No one wants to hear how I’m in pain all the time, or that I feel like shit every day. I don’t want to lose friends because I sound like a broken record set on the ‘Complaining Song’. I’ve already heard people grumble about other people/friends that complain too much about little things, like being broke, or their not so great relationships, or their jobs. I don’t want to be that person. I don’t want people to resent me because I complain about my illness all the time. So I just keep my mouth shut.

The problem is that now no one knows how I really feel. No one knows what every day is like for me. No one knows my struggle. They all assume I’m fine, because that’s what I’ve been spoon feeding everyone for years. But that stops now. Not because it’s time that people know the real me, or that I’m ready to complain, or any other reason I’ve made up in my head.

The real reason, the most honest truth that I’ve ever said aloud…

I’m dying.

It may not be the kind of dying everyone thinks of when someone says that. I don’t have one year to live and am about to go on a bucket list journey for the rest of my days. No, nothing as abrupt as I’m counting down the days. But, in actuality, I am counting down the years. I’ve been given a number. A number that I’m not ready to share. But it exists. It’s very real, and it’s very scary.

When I got sick at 32 years old, my Rheumatologist at the time assured me that I’d most likely still live a long and fruitful life, as long as we found a good medication to keep me going. But three years later, and 13 different RA medications, and nothing works.

And not only does nothing work, but in those three years the medications I have tried have had a bad reaction on my body. Steroids, chemotherapy, dangerous narcotics for pain management, these have all given me more diseases that are incurable, and done horrible things to my body. I used to think the enormous weight gain from the steroids was the worst of it. But then came the Osteoperosis. And then the Lymphoma, which we thought we got rid of, but unfortunately I found out this week that its back with a vengeance. Then there’s my reoccurring Pericarditis. And now after some tests this past week all roads point to more cancer. Followed by a healthy dose of Lung Disease.

These are not small ailments that I can sweep under a rug and pretend they don’t exist. I can’t slap a smile on my face and pretend everything is ok, because it’s not. I’m dying from about 4 diseases that don’t have a cure and all the medications for them that at least help people live a longer happier life, don’t work on ME. 

I’m not being dramatic or a hypochondriac or making something bigger than it is. I’m dying, slowly, but it’s happening. My body does not want to continue. It’s breaking down at an incredible rate and my doctors, and my homeopaths, and naturopaths, and anyone else who helps maintain life- cannot figure out how to save me. 

It’s scary. I’m scared. I was given a number. An estimate if you will, of how long I have if I maintain how I am right now. That number does not take into account the new cancer, or lung disease, or my worsening RA. It’s how long I have of I stay the exact same as I am now. And I’ll tell you, it is not a good number. Not for how old I am now. And not for my reality of getting sicker and sicker as the days go by. In fact the real REAL number would probably shock and scare you too.

This is my reality. I’m afraid. I’m afraid to die. I don’t want to go yet. I want to live til I’m 80. I want to see so many more things. And I want to see them standing on my own two legs, healthy. Not in a wheelchair, or from a hospital bed, but as a well person. But that won’t happen. And I am learning to slowly accept this. It takes time, and a lot of therapy. But I’m accepting my fate.

However, I will no longer keep that to myself. If you ask me how I feel, be ready for a true answer. It might make you uncomfortable, or awkward, or depressed. But I shouldn’t have to hide my feelings or who I am to make other people feel comfortable. That’s not my job. My job is staying alive. And I’ll be working very hard at that moving forward. You can either accept that, or move on.

I have fear. I am afraid. I am scared. I worry. I’m depressed. I’m in pain. I’m sick.

But I also love. I care. I support. I smile. I laugh. I live.

I want to live, not just survive.

 

 

If you would like to help support me in my fight against my disease, please visit my page here. Thank you for your continued love and support.

 

Dying doesn’t mean “done”

It’s been made known to me recently that a lot of the people in my life have the wrong idea about what’s going on with my illness. I suppose this is due to lack of knowledge and understanding, as well as not wanting to open the can of worms that is the discussion of my disease. I get it. It’s human nature to be curious, and yet at the same time awkward.

Some friends and family come right out and ask the questions they want to know the answer to. They are direct, clear, and concise. They want to be in the know throughout the whole process, maybe this helps them be more supportive.
Others wait for me to update them with bits and pieces on my healthcare. They follow the news as it comes in, rarely asking questions, content with the bare minimum.
Then there are those that do a bit of their own research. They read articles about Rheumatoid Disease, drug options, new fad diets, and testimonials from people who’ve had less aggressive strains than I. They endlessly give their opinions on the medications I should be taking, the weight control and dieting that I should be on, and how I should live through my illness. Not from the stand point of a medical professional, but from a person who subscribes to Rheumatoid Arthritis Today, and keep their screens open to WebMd.

I’m happy that the people in my life like to be informed of my disease, and like to stay in the know to an extent. But at the same time, no matter how many articles are read, or how often they come to visit (which lets be honest, is only on my good days), it’s not the same as experiencing it. No one will ever know what goes through my head, or my body. It’s easy to say “I understand what you’re going through” when talking about a wicked case of the flu, or a nasty migraine. But they can’t possibly know what it feels like when I wake up feeling like a bus hit me in the night. Or that getting up from the toilet feels like my knees have dull butter knives being slowly pushed through them. That when I try to get dressed my shoulders feel dislocated. And that showering when your hands ache is one of the hardest things I’ve ever experienced. Biting my shampoo bottle to get a smidgen out on to my wrist because my hands are in the immovable claw position, or using my mouth to hold my loofah has been one of the most trying times of my life. 34 years old and I am an invalid on most days. Tell me, what article can tell friends and family how that feels? I need to buy it up in bulk and send it to everyone I know.

 

Sometimes being ill is the loneliest feeling in the world. Even with the unending support of my mom, the only person besides my doctors who has the closest to accurate idea of what my life is like, it can be hard to move through the tides of my disease.

I have 14 doctors whom I work with. 14 medical professionals who have years upon years of experience working with the ill, and still no one can help me. In the beginning, I used to think it sounded kinda cool that my Rheumatologist needed to consult with other doctors regarding my case. I was an anomaly. No one had seen a case like mine before. It was more aggressive, more damaging, and more out of control than anything any of them had seen. But I quickly realized that that kind of “special” isn’t the kind anyone aspires to be. It’s not special or fun that no one can help me. And people wonder why I don’t want to talk about it. Why I don’t care to share. I mean, what do you say to someone who wants to know what dying feels like?

Because at the end of the day, that’s what’s happening. Some of my doctors have had the nerve to say it out loud. Others just ignore it and keep their mouths shut. No doctor wants to tell their patient that they can’t help anymore. Sure, they can keep prescribing medications as they are manufactured, and talk about healthy lifestyles, and a positive can-do attitude. But it must be hard for them. To have to look in the face of someone who they don’t know how to help. It’s the failure a doctor never wants to know.

 

As for me…

What do I say to you? What do I say to my doctors? What do I say to the family and friends that have the guts to ask me how I truly feel?

I guess it’s that I feel everything and nothing.

Not the answer everyone wants but the only one I can give.

I feel like I’m a broken record when I talk about how much pain I’m in. It sometimes feels like no one really believes me when I say it hurts everywhere. I’m tired of being asked what my pain scale is from 1-10 when it’s always more like 50/10.

I cry almost every day in the comfort of my bed away from prying eyes, so that I can stand in front of everyone else and smile. I’m not smiling for me, I’m smiling for them. So they don’t have to be touched by my pain, my life, my suffering.

You want to know what it feels like to be dying?

It feels like living. I haven’t died yet. My life still continues. My body still lives, the blood moves through it, and I still walk. Dying feels like living each day in the knowledge that I’m still breathing. That I am still getting up out of bed every day. Dying tastes like the chocolate brownie I ate an hour ago. Dying feels like the hot shower I had this morning. Dying feels soft like the fur of my cat as I stroke her belly.

These are probably not the answers that people wanted. But I’m not ready to live up to their expectations of what my illness should feel like. I know what it feels like and that’s all that matters. Well, that and the fact that while I may be dying, I am certainly not done.

 

Just One Night


You know how when medical examiners talk about a dead body they always refer to it being cold? Well, that’s because the blood has stopped working it’s way through the body. The circulatory system has stopped, the blood isn’t moving. That always makes me wonder about when we get chills when we are sick. Our bodies feel cold. Is it a similar feeling to when our bodies are dying? Has the blood stopped moving? Do we feel cold because our bodies are at a standstill?

I feel cold.
My teeth are chattering, my hands shaking, my body violently convulsing. I feel so cold. The fan is off. Why am I cold?
Is the pain doing this to me?

I’m in so much pain. The bones feel broken again. How many salon pas patches can I wear before the whole exercise is redundant? Does the shaking cold have to do with the pain?

I wish I could sleep.
But every movement I make ends in moans of despair. It hurts everywhere. And I’m so very cold. It hurts.

Hours pass as I doze in and out. The pain waking me every time I move an inch. But the exhaustion lets me doze again and I find comfort in the small snatches of rest I get here and there.

Every slight movement causes extreme pain. My fingers look grotesque. They are fat and shiny, like pudgy sausages. I can see the bruising of purple, only that’s not really a bruise. It’s just the discoloration of my disease poking it ugly head out the window any chance it gets.

Pain. An overwhelmingly painful trip to the bathroom leaves me sobbing on the toilet seat. How many people have to psyche themselves up to stand again? How many people deal with pain on this level? Is it like this for everyone or just me? My knees scream as I finally lift myself up again and hobble back to bed.

I’m cold again. My teeth chatter and I struggle to keep warm and get back into bed. It’s hard to pull the covers around me when I can’t grip them with my hands. They are frozen in useless claws. I peel off the now used anti-inflammatory patches and wonder if they provided relief at all.

I look at my feet, swollen as big as footballs. Shiny and fat. I wonder if they will let me walk today, if they will allow me out of bed. I glance at the clock and yearn for a hot cup of tea. The loneliness is all consuming at times like this. How much easier life could be with a companion. Someone to share my emotional and physical struggle with. Someone willing to try and understand.

I doze again, and then wake to a comforting sight.  One of my cats has come to sit with her mom. Her empathy serving as a warm fuzzy blanket Got my soul. She senses I can’t pet her today. So instead she pushes her head against my face, rubbing her face against mine, scenting me, showing me her love. I fall asleep again to the rhythmic sounds of her purrs.

The birds are sounding. It’s morning. It seems I survived the night. One more night passed. I wonder how many to go.

 

A Letter To My Disease

Dear Rheumatoid Disease,

This letter has been a long time coming. I’ve wanted to write for so long, but there were things stopping me. It’s not just that I couldn’t find the right words, or that I was compiling my thoughts and that took time. If it was just that I could have written one letter, and then another, and then another, until everything that needed to be said was on paper. It’s that I’ve been so lost, I haven’t wanted to write at all. Not my blog, not my journal, in fact the only thing I have been doing is coloring. That didn’t need words, or emotions. I could sit there for hours with my books and pencils, watching the colors, deciding what they meant to me, what they represented on that paper, and in my life. Zoning out, hour after hour, day after day. Colors.

 

Sometimes though, the colors aren’t enough, and they can’t take the pain from my mind, they can’t save me from you. I often fantasize what I would say if you were standing right in front of me. If you could be a physical being, what I would say to make you listen. What I would do to you to make to feel what you have done to me. Would I hit you? Would I scream and shout? Or would I be vengeful? Would I do to you what you’ve done to me?

If you were a person for a day I’d make you be me. A taste of your own destruction. I’d make you feel the pain of getting up in the morning knowing that there is no cure for what you have done. Make you feel the humiliation of not being able to open a carton of milk, like you used to be able to do not three years ago. I wonder if you wanted me to feel small and insignificant on purpose, if that was part of your game. I’d make you then bathe, and cry out in pain and shame when you couldn’t squeeze the shampoo bottle, or lift your hands to your head to lather in the bar of soap you were forced to use instead. I wonder if you even care how hard you have made my once simple life. Would you understand my anger when you couldn’t get dressed without screaming, or pull items from the fridge to feed yourself? Or would you laugh at me, at yourself, because this was your design, and what you wanted. Would you smile at the people on the street that will never understand my pain, will you feel happy that your work was a success?

Some days I stand looking in the mirror, hoping to talk to you. Hoping to ask you why, why did you choose me? Was it my body, was it an experiment? Was my body more resilient than others, were you hoping to see something different in me? How did you come to this choice, this body, this severity? And how much longer are you staying? Months? Years? Are you planning to die with me? Or maybe when I go you just move to someone else, another body for you to destroy piece by piece.

 

I wonder…. If I begged, if I pleaded with you to stop… could you? Would you? If I cried for you, showed you how much I don’t want to die… Maybe then you would ease up?

 

No of course you wouldn’t. I see your smile every time one of my bones cracks. I see your joy in the swelling of my joints, and the discoloration of my skin. I feel your content when I can’t find clothes that fit due to my growing body, a side effect of a drug that barely touches you, but causes me great discomfort and shame. What will it take to bring your smugness down? What can I do to destroy you like you’ve destroyed me? Maybe the only way is when this ends, when I take you down kicking and screaming. When you’ve broken everything and all that’s left is the long sleep.

I always sit and wonder what to say to you. How to make you see how wrong you’ve been, how unfair. Why did you do this to me. What are your goals in all of this? If it’s to ruin me, you’re done, you can stop. My bones are brittle like English toffee, my blood poisoned with you, my body exhausted and worn. Every inch of my flesh is crying. Is that enough for you? Have you had enough yet? How much more can I give, how much more do you want?

 

I’m tired. Please, please, please let my body go. Find another. I wont be much entertainment soon. My body is falling apart. Find another. Please. Please. Please.

 

 

 

 

***If you would like to help me financially/medically please visit my page and make a donation: 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