The Choice

When I was eleven my mom and I were living in New Zealand, her native country. It was definitely a lot different growing up than growing up in Hawaii, an island chain that didn’t experienced the four seasons like most. Hawaii didn’t change into shades of autumn, there were no piles of fallen leaves in gold, auburn, and burnt orange. The worst winter I experienced was just hard rain that brought on humidity that only those living in the tropics would understand.

When we moved to New Zealand following her finalized divorce to my dad, my mom cautioned it would be colder, but it never felt that cold to me. I bundled up in sweaters for winter, and donned a rain coat in spring, but that was more for comfort than anything. I didn’t realize the temp change until dipping in the ocean for the first time. The South Pacific Ocean was much colder than the tropical climates I was used to. I could never get used to the icy feeling. Those who lived in New Zealand were of course used to it, stating that in the summer it was warm. But their idea of warm was my idea of Hawaii on its coldest winter day, when most wouldn’t jump in.

However, I was a born water baby. I have many photos of me as a small child, and I’m always playing next to a body of water. The Scorpio in me could never get enough, I was a water sign through and through. As soon as I was old enough my mom put me in swim school and I took to it like a fish. I won swim meets left and right, and excelled at anything water related.

So, when I was eleven we visited a famous Auckland region beach called Piha, located on the west coast. Piha was known for its good surfing, even boasting a surf club. It was a black sand beach as well, which I’d only ever experienced one other time before, and loved the novelty of it. Piha was also known for its strong currents and rip tides. So well known in fact that there were safety zones in which you could only swim between two marked flags, and lifeguards on duty to rein in swimmers or surfers who’d been dragged out by the fierce pull of the ocean.

On that fateful day back when I was eleven, we had been driving around with my moms boyfriend at the time and I had brought a friend along with me.

Rae was a schoolmate whom was certainly not my favorite friend, but was the one available to hang out that day. While we got along just fine, I had always sensed a bit of resentment from her (yes even at 12 I could see it). She was an only child as well, from a single parent household, but was raised by a father and not a mother. I often wondered if she envied my close relationship with my mother, and had noticed quite a bit of competitiveness.

We weren’t beach ready, and lacked swimwear, but we did have a couple towels on hand and Rae and I begged to go for a dip. Looking back now, the t-shirt and shorts combination I was wearing was definitely not the best swimwear for a beach like that. However I was eager to be in water again, and despite the chilling cold of the icy South Pacific, I jumped right in.

That day I learned a valuable lesson that has stayed with me for a long time. Rae and I unfortunately got caught in the rip tide that day, and we were pulled quite far out. We knew we were in trouble but started to make the slow and steady swim back in. After what seemed like forever, a lifeguard boat came out looking for people in distress. Rae was closer and I shouted at her to get his attention. Luckily he saw her straight away and picked her up. I waved at her to have him pick me up too, but she did something that has stayed with me for these twenty five years. She looked right at me and then turned her head, and motioned she wanted to go back in, knowing that I needed help but denying it to me. In that moment she couldn’t look past her resentment or whatever she felt deep in her soul, and made the choice to leave me in the sea.

I understand that at eleven perhaps she didn’t know what she was choosing, that she might not have had the capacity to realize my life was in her hands. Though I certainly had the capacity to know and realize if I wanted saving I would have to do it myself.

I don’t know how long it took me, but I slowly and methodically swam in. My water laden shorts and shirt did nothing to help my struggle, and I’d never realized until that moment how very streamlined my swim team uniform was. I thanked the universe that I was a swimmer and that perhaps I’d always trained for this moment, when my skill would be needed most. I finally made it back in and back to my mom, her parter, and Rae. I glared at Rae but said nothing to her, it wasn’t necessary, we both knew what she did. And after that day I didn’t spend any more time with her outside of school. I knew a bad apple when I saw one.

I have thought of that day many times. I’ve mulled it over in my head, picked it apart, tried to understand how and why. But the conclusion I’ve always come to is that we just can’t know what’s in the heads of others. We can’t know their demons, as much as they can’t know ours. Did she want me to drown? Probably not. Did she want me to suffer? Maybe. It’s not worth thinking about too hard.

Last week, I returned to Piha Beach for the first time since I was eleven. Twenty five years of fearing those strong currents, and in a way fearing the death that I could have met had I not been strong enough. I sat and let my feet squish in the black sand, watching the distant waves before me. It was then that everything started to make sense. I had an epiphany.

About a week ago I saw a post I liked on a chronic pain page that I follow on Facebook. It said..

“I often ask myself, why me? Why must everyday be a pain day? But then I ask myself – why not me. I would not wish this on anyone else and perhaps the universe gave me this because I can handle it better.”

Now when I first saw that I scoffed at it. I mean the universe sucks in picking people if that’s the case. I’d prefer a different present thank you very much.

But when I was at the beach, I started to think about it. And then I got back in the water after having being scared of its currents for almost three decades. The currents were really strong and I had to fight to keep between the swimming flags. There were moments where I wondered if I should pick my feet up and see how far it swept me away. It was then that the universe reached down and gave me a revelation that has taken my lifetime to conceive.

On that day, when I was eleven, I could have certainly drowned if I gave up. I was tired, my legs and arms ached at the weight of the water against me. I could have let go and let the sea swallow me. But I didn’t, because I knew I could make it. I knew it would hurt and it would be exhausting, but that I’d make it if I wanted to live.

Since I got sick, and then sicker, and then sicker, I have cursed the world for giving me this when there are healthy serial killers that walk the streets. Cursed the universe for giving me this pain and heartache when there are billions that live without it. But just like that moment in the ocean all those years ago, I was given a choice. There have been so many times that my disease has almost won. I’ve been hospitalized, been in cardiac arrest, I’ve blacked out because the pain almost consumed me. But I’ve always chosen to wake and deal with it. There have been times where I know my body would have given up if I let it. A moment in a hospital bed after I blacked out from arrest, a moment where I saw dark and light and knew I could choose a different path.

I chose to live. And sure, I don’t want to be sick. I hate my disease and the fact that I never get well despite the handfuls of pills they make me take, and the chemicals they pump into my IV. But I’m still alive, and I wouldn’t wish this on anyone, even that girl so long ago that turned her back on me. Maybe the universe did give this to me because it knew I could handle it. That I wouldn’t let it defeat me. Maybe that’s what it means to be alive. Having something to fight for, living for more than just the 9 to 5, and the mortgage payments, and the white picket fence. Sure, a lot of people have it better than me, physically, mentally, and financially. But maybe I’m different because I’ve looked into the darkness and turned away.

I’m alive not because my heart still pumps. I’m alive because I choose to be. I’m severely ill, dying slowly from incurable diseases. But I feel more alive because I know how fragile I am. I’ve looked into the darkness a few times now, and I’ve said no to its painless quiet. I’d rather live with this than not at all.

Now Piha Beach can be a memory of the first time I chose to be stronger than you could ever imagine. And choosing is beautiful.

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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?

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.