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Mulling Over A Dream

It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.

Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.

My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.

So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…

The last memory of my other life.

The life I had before this was all I knew.

A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.

Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.

It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.

I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.

But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.

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We’ve still got time

For the last two years I’ve lived on a clock.

A clock that has been ticking away the moments to where I meet my end. My illness eating away parts of me that are unseen.

Because of this I’ve adjusted to a “come what may” attitude towards life. I’ve been living free and fearless, feeling that this was the only way for me to live my life to the fullest.

But I have recently come to realize that this may not work for my anymore. I can no longer live in the shadow of my disease.

I have people I care about and friends whom are important to me. The ‘come what may’ philosophy only worked for me when I had nothing to live for and therefore had no fear of what happened to me.

This is no longer an accurate representation of my life.

Maybe it’s that 2018 is in quick approach and it makes us all think about what is important in our lives.

Love. Family. Friendship. Truth. Fun. Happiness.

No I don’t suddenly fear death or the end of my being, despite that always lurking.

No, I don’t fear the clock of life.

I fear the loss of the important things.

People go through their entire lives not being truthful to themselves and others. Life is short, no matter what time clock we are all on. Cherish the time that is given. Share your feelings. Tell your friends they are important to you. Tell your loves what they mean to you.

Instead of being fearless, respect the time you’re given and use it wisely. It’s not to late to be truthful to who you are.

Our footprints

I recently ended a two week long road trip around the South Island of New Zealand. A trip that I never thought I’d be able to take at this point in my life.

At 36, I never thought I’d be struggling under the burden of multiple chronic illnesses. Never thought that I would live each day in pain and fatigue, wondering if or when it would all end. In March of 2016, one of the eleven doctors and specialists that I saw on a regular basis told me that I was living on a clock. A clock that no woman in her mid-thirties should have had to think about. A clock that was slowly counting down the time unto which my life would end. I had time, years in fact. But not decades, like most my age looked forward to. Ten years minimum, fifteen if I got lucky.

I took that news on my own, silently in his office, starting at my hands as if they were supposed to provide me with the answers he didn’t have. If they could find a medication that worked for me, more time could be bought. But they hadn’t found anything in the years leading up, and every day my disease turned more aggressive. Every time I visited a doctor a new diagnosis would be presented, or the bad news of a failed medication would be shared. Years of allergies and intolerance to the leading drugs for my diseases, countless failed treatments, and pain, so much pain. And then to hear that despite all my optimism I was going to die sooner than maybe even my own parents…

Five months later I landed in the Intensive Cardiac Unit at Queens Medical Center for ten days. I survived a “multiple cardiac event”, according to my cardiologist and the medical team that looked after me. Despite my doctors projections, my body had other ideas in mind for my time left on earth.

But something changed in me the night that I almost died. It’s not that I wanted to go… Sure some of us living with chronic pain have been down that road where we wonder if the pain is worth going on. Nothing as dark as giving into those thoughts though. And in the middle of my second heart attack of the night on my third night in hospital, apparently when the pain became too great that I actually blacked out, I had an epiphany.

No, I did not “see the light“. I mean yes, there was light, but clearly it was the doctors shining something in my face trying to wake me. I did however feel like I had a choice. A choice on whether to let go, or to continue on.

I don’t know how long I was in that place, probably only seconds. Later my doctors told me I could have died. And I knew if I had been willing to give up, I would have. But something had changed. Despite all the pain, and the knowing I didn’t have long, I still wanted to continue. Something told me that I had purpose.

A year and a half later I finally understand what that is.

Earlier this year I made the life changing decision to move to New Zealand, as healthcare was more accessible for me there as I was a citizen. More so than it was in the US, as it wasn’t affordable, even on Federal Disability. It was a chance to turn my life around as well, live healthier, make friends, maybe find my purpose.

I started bi-monthly Infliximab infusions in June, and had successfully gotten myself off most of my hardcore painkillers by October. I’d even lost a large portion of weight that I’d gained from years of Prednisone usage. I got some new hobbies, joined groups, and made friends, so many friends. I even started dating for the first time in two and a half years.

Sure, I was still in pain. My disease didn’t magically disappear because I moved. Chronic illnesses don’t drift off when you find love, despite what Disney movies try to teach us. I still spent multiple days in bed, fatigued beyond repair. Lung Disease reared its ugly head in a new diagnosis in August. Lupus followed soon after..

The change was that I felt I was around more people that supported me. People didn’t treat me as pitiful, and because of that I was able to let the real me shine through. I reclaimed the person I used to be, maybe not in body, but definitely in spirit. And I realise now it’s all because of footprints.

Just like others footprints made an impression on me during my illness, my footprints were helping others too. I accepted the love and generosity of friends and strangers in Hawaii because my blog had reached them in ways I didn’t know. I couldn’t see that the knowledge I’d learned in my own experiences were helping people just as those whose generosity helped me. Just by listening to a friend, or sharing a meal, I was leaving footprints on the journey of others, just as they leave theirs on mine.

Today as my partner and I concluded our two week vacation, one that I wouldn’t have taken had I not left footprints on his journey as equally as he left his on mine, I had my epiphany. We were talking with our Airbnb host, just as we were getting ready to depart for the airport, and she shared that she had lupus. She shared this only because I shared that I wrote a blog about living with invisible illnesses. Through this tiny piece of information she came to not only understand that she shouldn’t feel alone, but also some references I gave her for support groups. She had no idea the resources that were available to her, feeling isolated by friends and family who couldn’t or wouldn’t understand.

On the plane ride home I thought about my footprints… If I can leave pieces of myself behind, to help or to grow or to love, then no matter how much time I have left, that time was worthy. I have and will continue to make a difference on those who choose to share my journey with me, just as I share theirs.

Our footprints, my footprints, matter…

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.

Its not a competition, but…

I know that I’ve said on many an occasion that I don’t subscribe to the Pain Olympics ideal. I will argue before anyone that this disease is not my own, and that not only do I share it with many, but there are so many other diseases out there that are worse than mine. Or if not not worse, than certainly more rapid in onset and/or life expiration. We unfortunately live in a world where diseases are as abundant as spiders, and often far more scary to deal with.

Its not a competition. No one wants to be sick. No one is going to admit they prefer the never ending pain, rather than living a healthy long life. And I know I’m starting to sound like a broken record, and I’ve probably made this point before… But if one more person tells me that someone they know has a relatively low impact disease and that I couldn’t possibly understand what its like to be sick, I WILL SCREAM.

About a week ago, I was talking with a friend and she was upset because her boyfriend is dealing with vertigo as a result of an ongoing ear infection. He had to take time off work at his construction job because of the dizziness and headaches that the infection had caused. I asked her if he’d been in to see a specialist yet, as I knew ear infections can be quite disruptive if not dealt with quickly. My friend went on in length about how stressed out her boyfriend was, and what a toll this whole thing was taking on him. I sympathized, stating I’d had an ear infection before and that they can be quite horrible to deal with, and that I was sorry he was in pain. To which she replied (to my utter shock), “Well, his is way worse, and you couldn’t understand his pain.”

Really? REALLY?

Look, I’m not trying to be an asshole here, or claim that I have the worstest disease of them all. I’m trying to sympathize and just say I understand. Its not a competition on who had the worst ear infection ever! I’m sure his IS quite bad if he was experiencing vertigo so badly that he needed to take a week off work. I understand that must really suck. Losing rent money sucks.

BUT…

“You couldn’t understand his pain?” Seriously?

I do more things while being in pain than you could possibly imagine. I put my body through things you probably wouldn’t think of doing, because normally you’d just stay in bed and ride out the sickness. My issue is that I can’t ‘ride out the sickness’ because it NEVER ENDS. I will be sick for the rest of my life. I will be in pain for the rest of my life. And because of my diseases, my life will almost certainly be shorter than yours.

I have woken up on a Monday morning and known without a doubt that I wouldn’t be able  to leave my apartment for at least three days. I’ve woken up on an infusion day in so much unbearable pain, and known that no matter what, I would have to get up and get to the hospital for my treatment. I could be screaming on the inside at every step down the driveway, but I’d force myself, because I have to. I won’t go as far as to be petty and say I’d love to trade a one week ear infection for my life, but don’t think for a moment that I can’t understand pain.

Pain isn’t just a physical feeling anymore. Sure, I feel the pain everyday. But its so commonplace now, that it just is. I don’t know what a pain free day feels like. I haven’t had one in almost 5 years. Everyday isn’t a “pain day”. To me, its just a day. Because the pain never leaves. The fatigue never leaves. The struggle of accepting what my life is now never leaves. The fact that my life will most likely be cut short never leaves. Pain isn’t a physical feeling. It just is.

Being sick isn’t a competition. But don’t you dare belittle what I go through, or I dare you to go through it yourself.

 

 

 

A drop in the ocean

Lately, I have been really feeling the solitude that my illness has wrought on me.

I am aware that I am emotionally not alone. I know that I have friends, and family, and a fairly large support network of doctors and medical professionals. I know that if I was having a bad fatigue day, a friend would be just a call away to come over and lend support. If I was having bad pain, and needed assistance bathing or eating, my mom would be over as soon as she could. If I was stuck in my head about the severity of my disease, I could call my therapist and we could talk through my struggles with my reality. If I just needed a friendly face, my sister is available for a video chat and emotional support. I am not alone emotionally.

One could even make the argument that I am not physically alone in my illness either. Over 1.3 million Americans are affected by Rheumatoid Arthritis, and it affects almost 1% of the worldwide population, according to the latest statistics from rheumatoidarthritis.org. As well as millions of others whom suffer from countless autoimmune diseases, chronic fatigue, and chronic pain. Yes, we all share a common link in our fight against invisible illnesses.

But no one can say they suffer from exactly what I do. No one else out there can say they are affected by the exact same diseases and illnesses that I have, in the exact same way. Because despite our common threads, we are all fighting our own battles within our bodies. No two people suffer the same way. We are as individual as every drop in the ocean, and that can be very isolating.

Over four years ago I was diagnosed with Severe Rheumatoid Arthritis from the get go. That alone was a tough struggle for me as I felt like I wasn’t given time to even get used to the searing pain. One day I just woke up and it was there, and its never left.

A year later I was forced to stop working by my employer and put on Temporary Disability Insurance, before eventually being officially “laid off”. By that point I was walking with a cane, and taking very strong opiates to calm the  pain that I felt in every joint in my body. With a heavy unbelieving heart, I filed for Social Security from the Federal Government.

A year after that I was diagnosed with Severe Osteoporosis, my doctors telling me my bones tested like those of an eighty year old woman, and not of a woman of thirty-three years, my  actual age at the time. Know how I found out about the Osteoporosis? By receiving a bear hug from a friend that cracked my apparently brittle ribs. Yep, that’s right….a HUG.

Within six months of the Osteoporosis diagnosis, I was sent to see two new specialists, a Cardiologist and Oncologist. After a biopsy of my esophagus, a tumor was found to be benign, but I had signs of early stage Lymphoma. I’d also started having chest pains congruent with Pericarditis, a heart condition attached to Rheumatoid Arthritis. New medications followed, as well as a mammogram, an MRI, multiple x-rays and CATscans.

Eventually, due to the inflammation in my body, and my weakened immune system, I landed in the hospital for a severe Cardiac event. It resulted in my being placed In the Intensive Heart Care ward at Queen’s Hospital. During my time there I suffered through Severe Pericarditis, including three minor heart attacks. I was thirty-four years old.

My doctors told me if I got any weaker than I was, and if they couldn’t find some medication that would work on calming my inflammation that I wouldn’t make it to my sixties. Truth be told, I was given a hopeful ten years.

For a change of climate, and pace, I made the decision to come to New Zealand, where I am a citizen, in early 2017. I thought with a different atmosphere, and medical system, that perhaps I could finally find a way to extend my life. By March of this year, no medications had worked for my diseases, and I was getting increasingly worse. My body was either intolerant of the medications available, or allergic to them. It felt like time was catching up to me. I hoped that somewhere out there beyond the ocean was the  key to my mortality.

By June of 2017, I had already started a new form of chemotherapy medication for my disease that appeared to be working for me. Physically I felt less pain, and had more pep in my step. I was starting to be able top exercise again, and I had lost a lot of the steroid weight. So, when I met with my Rheumatologist after a series of tests to check my condition, I was feeling very hopeful. It was then that I was informed of my new diagnosis’ of Lung Disease and Lupus.

There are times when I can feel so very small in this world. Like a drop in the  ocean. The solitude of my illness can be so overwhelming. No one will ever quite understand what I am going through, or how this feels. No one can tell me they know how hard it is to wake up sometimes knowing that your own body wants you six feet under.

I don’t quite understand how these things work, but I do know that it pretty amazing that I have not completely fallen apart by now. There are days where I can wake up and not be fully assaulted with the gravity of my situation. I can have a shower, get dressed, and face the day, rain or shine, with a smile on my face. I can see my mom, or friends, or just take a walk and feel happiness in my heart.

Then there are times where I look in the mirror and wonder when my last day will be. I wonder what awful thing my body is doing today to destroy itself. I can lay in bed for hours staring at the ceiling in silence. No tears, no anger. I contemplate my mortality and the awful unfairness of my life, like I’m watching an old movie with no sound. Days like that I lay there and contemplate my life as if I were a drop in the ocean. I wonder what it will feel like when I am swept away by the current and I have let go. Today is not that day.

But it will come. Sooner than I would like.

 

 

 

 

 

 

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?

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