A chance meeting

Today I went on what I perceived to be a new adventure. A music festival, that my now ex invited me to, those many months ago when we were still happy.

Despite our breakup I thought it prudent to still attend. I love music and freedoms, everything this festival was about.

But I didn’t expect to find what I did.

I thought I’d find myself again, something that in recent months I felt I’d lost. I give so much of myself in relationships. I give everything. And it’s not always reciprocated. In polyamory, it’s very often not reciprocated. But that’s who I am, and I refuse to stray from my truth. I will give until nothing is left, and I am often left alone when someone moves on to another they can receive more from.

I live with a chronic illness that many will never understand. It consumes me daily, and yet I am always optimistic that I have something extraordinary waiting for me out there. That maybe I was given this disease to prove how much I can handle, and maybe one day I will be given something lovely in return.

Tonight I felt sad. Overwhelming sadness that came out of the depths of my being and brought me to a stand still. So much so that in the middle of a festival I had to sit down and feel it moving through me.

And during this sadness, someone found me on that bench. I don’t know who he was. Maybe an empath, maybe a psychic, or maybe someone who just understood deeply my pain. He touched my hand and asked if I was ok. I said “sure”, not wanting to ruin anyone else’s mood.

But this man looked at me, and when he did it was like he looked inside my soul. He saw everything that was me and understood.

And he said, “I see your pain. And not the physical, though I know that also hurts you.”

I was confused, and thought he might be high or drunk.

He said, “You’ve met him, you knew him well, and he could have been your love. But he chose another, and thats on him, not you. You are exceptional.”

And with that, he got up and walked away.

I will never forget those words for as long as I live. This man who didn’t know me, saw inside my soul, inside the world.

He saw my sadness at the loss of love in my life, and though it wasn’t great news, it calmed me in a way I can’t explain. He took away my sadness. He took away my pains. And when I feel pain at the loss of love again, I will remember that I had it once.

I’ve lived a life worth living and loving.

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I still don’t understand

I grew up with Disney, and fairytales, and romance. I grew up believing one day my prince would come and sweep me off my feet and save the day.

In my twenties I quickly learned how silly these concepts were. That Disney wasn’t real, that fairytales were rare, and that there was no prince waiting on a white horse.

In my early thirties, I woke up one day with Severe Rheumatoid Arthritis. In the six years that have passed since then I’ve learned that my body wasn’t made for romance, fairytales, and dreams come true.

I don’t know what the meaning of life is, or why we are here, and what we as humans are meant to do. But I’ve come to realize that I my body and mind were meant to endure colossal amounts of pain.

Pain from the diseases in my body that won’t quit multiplying. Pain from cancers that won’t give up. Pain from being destroyed from inside out. And the pain from being constantly let down by those who don’t stay.

If my body was meant to endure such stress and pain, why give me a heart and mind that is so vulnerable to the human condition?

Why let me know sadness and sorrow, heartache and loss? Was the physical endurance not enough for one person to take? Must I feel the destruction of everything inside on such a monumental level?

I don’t understand why I was made to experience so much pain. I don’t understand. I don’t understand.

little by little

I was looking through #quotestoliveby on Instagram tonight and came across three small words.

“little by little”

I’m sure that this is probably a mantra for many, as it could encompass so many aspects of life. It might have been written to encourage people to strive for their goals, to not give up. Maybe to save their pennies, and go for that dream vacation. Or keep chipping away at their education, until they’ve succeeded in their dreams.

I used to love seeing quotes like this. I’d save them to my quotes board on Pinterest. I even contemplated getting some of them as tattoos, so powerful a message they were, I wanted them as a permanent reminder.

But tonight I see these words and they don’t speak to me as they once might have. I see “little by little” as a reminder of my mortality. I see it as my disease chipping away slowly at my body from the inside out.

Little by little my bones grow brittle and break more often.

Little by little my fatigue consumes me to where I wonder if I can get out of bed again.

Little by little my hair falls to the floor.

Little by little the drugs fail and I wonder what will be next if I’ve already tried everything.

A lot of people have commented on how strong I am about my disease, how in control I seem, how optimistic. They don’t realise that this is the mask I must wear, my uniform. Because if I share how scary it is to not know when the end is, then I’m being “dramatic” or “looking for attention”. No one wants to hear when the chronically ill are suffering. It’s a nuisance, something that should be kept to themselves. So we do. We keep it in. We become experts at the “I’m ok”.

But there are days like today, moments where the gravity of everything collapses our resolve. It might be a song on the radio, or a comment someone made at dinner, or that moment when we look in the mirror while washing our hands. Everything we hide from everyone, including ourselves, shatters. We remember what we are going through and how bad it is.

So tonight, when I read those three words, I remembered that little by little my body is dying. And that just sucks.

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.

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.

 

 

 

 

 

 

Faking It

The other day I read an interesting story on Arthritis.net about “faking symptoms”. Truth be told, at first I was a little annoyed that it sounded like someone was talking about exaggerating their symptoms because I feel like I face the stigma of that every day. People that I come into contact with are constantly second guessing what I tell them, not understanding the severity of my disease because of how I look on the outside. The constant annoyance of having an ‘invisible illness’, it’s exhausting.  Everyday, even if I’m having a terrible, terrible pain flare, I look completely normal (besides the obvious Prednisone weight gain that is). The only way you could truly see if I was very ill is if I show you the pain on my face, or if I’m limping, or if you caught me during a bout of nausea.

Back to the online article.

So as I started to read this article on ‘faking it’s I realised my initial thoughts on it were wrong. The woman writing the story was indeed talking about something I find myself doing all the time, faking symptoms to make people thing I’m better than I am. I guess it stems from my pride, from not wanting to appear weak, or vulnerable, or small. But the woman was right, I do in fact fake it with family and friends all the time, just not in the way they’d think.
A good example of this is just the day before yesterday, Thanksgiving Day. I woke up that morning around 5am already crying. My pillow was wet with tears, and the second I tried to move I knew why. I was having an excruciating flare. I couldn’t even keep from crying out as I moved from my bed to the bathroom. Every step felt like my feet had been bashed in by a sledge hammer, Kathy Bates of Misery style. My shoulders felt dislocated, my hands crushed into a thousand pieces, my rib cage heavy and pained, as if the very bones were a cage for 50lbs weights that were tossed around as I attempted to move. I worried about how I was going to accomplish helping my sisters cook the big thanksgiving feast.
That’s when the faking it started. I cried while making myself a pot of tea, everything taking longer as it was agony to move at all. Then it occurred to me to make breakfast for my family since we had to get up so early. And sure, it took me quite a while to accomplish it as the pain was brutal, but an hour later Apple Croissants were packaged into Tupperware to take to my dad’s house. The mere act of that alone was agonisingly painful, and I’m not sure why I even put my body through it. The ordeal of trying to open the crescent roll tube was a sobbing matter. So why? Why didn’t I just stay in bed for an extra hour and rest and not aggravate my pained body?
Pride. I didn’t want to be seen as vulnerable or weak or pathetic. I wanted to be seen as strong and capable, someone who can overcome the odds of a severe and debilitating disease, someone who was winning.
Later at my family’s house I continued to push myself despite the pain. Swearing I could do the work even though every step, every movement, was agony. They asked how I was and I’d shrug it off with comments like “I’m fine” or “Don’t worry, I can push through”.
I took a nap in the early afternoon to regain composure for the coming evening celebration. As soon as the door was closed and locked I could be the real me again. Wipe the plastic smile from my face, let the exhaustion and pain show. I lay on the bed and slowly registered every pain, every feeling of brokenness, and continued to do so until the exhaustion took over and I passed out. But not even two hours of rest can expel the pain. Eventually I had to rise again, shower, change, and paint my face with a look that I hoped would convey “Everything is fine”.
It was only much much later, when I was home again and in bed, staring at the ceiling as silent tears slid down the curve of my cheeks, did I wonder why on earth I had put myself through that.

I’m not helping anyone, including myself, when I “fake it”. If anything, I am the cause of people thinking I’m faking it for real all those other times. My pride is damaging my credibility as a person with a severe illness. If people always see me smiling and saying everything is fine, well of course they will be suspicious of any real pain I experience. They won’t understand why I’m fine one minute and in pain the next. Because I’m showing them that it’s painful sometimes and other times it not. But that’s a lie. It’s always pain. I’m always in agony. I always hurt.
If I saw someone walking normally one day, and the very next I saw them limping and asked ‘hey what happened?’ and they told me that in fact both days they were in pain, but they were only showing the limp today, well I’d assume something fishy was going on. And that’s basically what I’ve been doing.

In my pride, I’ve not wanted people to see how truly sick I am. Last night as my mom and I discussed it, I came to the root of my problem. Yes, it does have to do with pride, and not wanting to constantly be seen as ‘sick’, but it’s also something else entirely. Something I hadn’t realized before, but was so painfully obvious.
I don’t want to be seen as the ‘sick person’ not just because it makes me weak, but also because it excludes me. Being labeled as ill automatically puts me into this group where I don’t get included anymore. Don’t fight me on this, because it’s totally true. I’ve received less invitations for group activities like beach days, bbqs, dinner parties etc. I rarely get asked out on dates anymore, which was never a problem in the past. I’m not the friend that people automatically turn to for a fun addition to an activity. And that always used to be me.
Once I realised this phenomena was taking place, I think that’s when my bout of ‘faking it’ really came to life. It was to counteract boredom. If I showed everyone I was better than I was then I would be included again. Sure enough, I was part of the laughs and stories and jokes in the kitchen on Thanksgiving. I’d been invited recently to more group social activities. I’ve even had a date recently. All because I tucked away my illness for no one to see. In a sense I hid the present me to bring back past me for everyone’s enjoyment. Everyone’s enjoyment but my own that is. Because it is exhausting hiding my pain. It’s painful hiding pain. What the hell Christine? What are you doing?

So now that I have come to terms with the stupidity of my actions… I’m stopping them. It’s time to just be me, pain and suffering and all. And if it’s confusing suddenly seeing me in a bad state all the time you can just tell yourself I was like this all along, that I hid it for your comfort but that those days have ended. I only work for myself now.
My exhaustion, my pain, my agony, will show on my face as I live it. As I experience it, so shall everyone experience me. The days of faking it have ended. I am thankful to that woman who wrote the article and brought my silly actions to light. The case of the Fake Christine has ended. Now what you see is what you get. Sorry if that’s depressing or hard to handle, but feel better in knowing it’s far less than what I deal with every minute of every day.

 

 

 

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