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Personal Purgatory

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

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

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

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

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

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

I wouldn’t let myself. 

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

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

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

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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.

 

 

 

 

 

 

My cold is not like your cold

I know time and time again I have advocated for the fact that being sick is not a competition or a race. We are not in the Pain Olympics, and no one gets a medal for being sicker than someone else. But I have to stomp my  foot today and cry out for all my sisters with Rheumatoid Disease and declare “Our colds are not like your colds!”

Its cold season for sure. I can’t get on a bus or be in a doctors waiting room without hearing a sniffle or a muffled cough. A lot of people are sick, and its no ones fault except for maybe the weather and this damn rain that keeps everything damp and chilled. So, we all walk around with crumpled tissues in our pockets, and and extra sweater in our bags, and we look like crap. All of  us. No one looks awesome when they have a cold. And everyone, men and women alike, has a little pity party for themselves about how shitty they feel.

Here’s the thing though, having a cold is shitty enough when you’re a regular healthy human. You get a cough, or the sniffles, and a sore throat, and your head becomes a bit fuzzy. Sometimes you gotta stay home from work for a couple days because you feel so lethargic and icky. Eventually after a week or so, your symptoms start to fade, you pull through, and its only a matter of time before you’re having a beer with friends around the corner again.

Let me paint another picture for you though… The picture of what its like to get sick when your entire life is already about being sick. When the cold symptoms start you’re praying that you don’t have the sniffles because of a cold, but maybe because you just breathed in dust from the curtains that you’ll never have the energy to clean. The sore throat starts and you force feed yourself a gallon of OJ because you know you can’t get a cold. But you know, you always know. Because no one knows their body more than someone who lives with a chronic illness.

Colds for us can last as long as three months if we aren’t strong enough to fight it. They can turn into Pneumonia, Bronchitis, Strep, and worse. A week can pass in bed where the only thing we can do is shuffle to the bathroom to pee, and then back into bed so we don’t get chills. Headaches turn to migraines. Those of us with chronic pain can sometimes be blessed by our diseases taking a back seat to let the cold do its worse. But other times we are stricken with flares, whilst also dealing with sore throats, raw noses from blowing too hard, and brain fog. A common two week cold for an average Joe turns into a two month long nightmare. And one of the worst parts is that we often aren’t allowed to get our regular treatments for our chronic diseases if we are fighting a cold or infection. Chemo and biologics have to be put on hold until the current illness clears our system. But they can’t if our flare ups contribute to them. So we get stuck in what seems like a never ending cycle of illness. For days, weeks, months…

So, next time you feel like responding to your friend that suffers from chronic illness that their cold can’t be as bad as that one you had last week…maybe take a moment to think about the differences between your every day life and theirs. Because from where I’m standing, I’d much rather a week long cold than the four weeks and counting cold I’m currently enduring.

 

You’re not sick enough

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

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

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

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

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

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

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

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

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

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

For fuck’s sake!

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

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

For fuck’s sake.

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

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

Well… I say NO.

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

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

BUT…

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

Let me be okay, if only for awhile.

 

 

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?

Wondering

Sometimes I feel so bound by my skin and bones. I wonder how it came to be that I was trapped by the very thing that makes me alive. My body feels like a prison and my disease the warden who lords over everything out of my control.
It’s amazing how you can feel completely alone in a world full of people. I have so many in my life who care for me and help support my medical needs. But when you have an illness that is more severe than most doctors have seen, how can you expect regular people in your life to really understand? Yes, they nod and listen to your answers to their questions. The polite questions that broach just enough of the topic to feign interest, but vague enough to not beg a lengthy answer. At least that’s what most hope. The problem with autoimmune disease is there is no simple answer. You try to answer the way you think they’d like, but their eyes glaze over after a minute. So you learn to clip your explanation to something short and perfunctory, knowing full well it doesn’t even uncover the tip of that iceberg.

This is one way you can start to feel really alone in your body.
Your doctors can’t even figure out why you’re so sick, can’t explain why as time goes by more diagnosis’s are added to the list, why every medication doesn’t make a dent in your pain. They have no idea, and you have no idea how to explain what your body has become.
Sometimes I sit by the window for hours, staring at the birds in the garden below. My jealousy of their absolute freedom sits heavy in my throat, like a dry piece of bread I can’t swallow. I listen to music without hearing the lyrics, barely comprehending when one song ends and another begins. Yet the sound soothes me. Reminding me that other people have felt as I do, trapped in their bodies and minds, sharing their feelings through melody, as I do with words.
I watch those birds, extending their wings, turning their faces to the sun, free to fly where they choose. I sit and watch them, as I watch my own hands curve and deform from pain. I wonder if they feel as we do, fear as we do. Do they sit and wonder how they fly and why? Are they alone in their minds as I am, wondering when will be their last flight?

The Dating Game 

I recently had coffee with an old friend, and we talked a lot about past relationships. So much so, that I’ve been dwelling on the memories of my relationships for days now. Truthfully, I’m sneaking up on two weeks here. Two weeks of late night insomnia, where my mind instead of doing the nice thing and allowing me to sleep, decides to remind me of every single person I’ve ever dated. Truth be told, it’s a long list, and sleep doesn’t seem to be getting any closer.

When I was younger, you could have called me “boy crazy”. I had a lot of crushes. Although, I was also shy, not having my first kiss until I was fourteen years old. An embarrassing affair at a friends birthday party, with all of my comrades watching hungrily to see if I’d mess it up. I did. Turned my head the wrong way, smashed noses. 

In time I got over the shyness, and in turn learned how to kiss, I suppose. With my seventeenth year came graduation from high school, my first real job, and college. I don’t quite know how or when it happened, but that year I blossomed. No longer did I feel like an ugly duckling, or shy as a mouse. I grew more confident of myself, and finally started to understand who I was as a person. That’s when I started to really date. 

As the World Wide Web grew more and more popular, and I was gifted a computer from my father, I found myself drawn to chat rooms where I could flirt more easily, having a mask of anonymity to hide behind. 

By the time I went to university in New Zealand, I’d found my stride in the dating world. My best friend Carmel and I used to constantly joke that this year or next year would be the year we would find boyfriends. And while we always gave it a laugh, and crushed on numerous, I don’t think we were ever fearful of not finding a life companion. It was only a matter of time.

Fast forward fourteen years, and here I am at thirty five, still single. Not that I haven’t dated. I’ve held two long term relationships in that time, as well as dated countless others. Do not misunderstand me, it’s not that I fear commitment. It’s as they say, I just haven’t found “the one”. 

For the last two years I could have sworn it had to do with my illness. I mean I did have all my hormones turned off due to long term pain management medications. Over a year of no libido is a long time. But now that I’m off them, and my hormones and libido are back in check, I can’t really use that as an excuse. Perhaps it was my insecurities all along that kept me alone. Confidence shows, so of course insecurities and doubt can show as well. Throw in a good dose of self loathing due to weight gain, and you don’t really paint a pretty picture.

So here I was, in a coffee shop, listening to my old friend talk about how they couldn’t find anyone to date who was worth it. And it catapulted my mind into a wormhole of every relationship, crush, sexual encounter, and glance, I ever had with another. Suddenly I was up at night wondering where I had gone wrong, if I should have given one a chance, or if I had wasted time with another. Your mind sucks that way. Anytime you want to sleep, it’s always there to count on with sneaky little unspoken comments like “they could have been the one” or “should have given that guy a chance” or “too late now”.

I hate my mind at 3am.

But despite my mind attempting to screw my sleep pattern, I did learn something of all this. My disease was never keeping me back. It was me. And all those other relationships and crushes and scenarios, well they didn’t work out because they weren’t meant to. My heart was still on reserve for the one who was worth it. 

We can’t judge our relationship statuses on the timing of others. My old friends dating life might not be working because he’s yet to meet his penguin (yes, I am using a Never Been Kissed reference, deal with it). Carmel found her soul mate eight years ago, and married him last year. It doesn’t mean that I will never find love. It just means that it’s not my time. Both of my sisters have married already, one being ten years younger than I. Doesn’t mean I won’t. And it doesn’t mean I will. But I’ve got to stop thinking negatively about dating. 

People say you’ll meet someone when you’re ready. I don’t think I was ready before.  But that was then, and this is now.

“If” is not the question you should be asking 

If I’m in pain all the time, you may ask is it even worth it, to do the things that I do.

If it’s so painful to run errands, pick up your meds, and go grocery shopping, why do you do it? 

If you’re in so much pain, then why get dressed and put make up on, and go out into the world, why not just stay home so that you can sleep and sleep?

If the sickness is as bad as you say, then why bother getting up every day, why don’t you just stay in bed?

If you’re in as much pain as you say, why are you not in a hospital, why aren’t people like you talking about how much pain they are in, and why have we only heard about it from you?

If your disease causes as much weight gain as you say, how come we haven’t seen in it others?

If is not the question you should be asking.

Because IF you truly listened, watched, and heard, you would know the answers to your questions.

That if I didn’t force myself out of bed and do the things I do, I’d become a prisoner inside my body. That if I stayed in bed I would get sicker and sicker as hope would be lost. That I’ve been to the hospital several times already, don’t you remember when I told you? That there are thousands of people around you every day that suffer from sickness, pain, and weight gain due to illness, but that all you see is fat, and so you judge without question.

If you really wanted to help instead of judging, you would look at me with eyes wide open, and see my reality for what it is, instead of judging me for something you refuse to understand.

Support Isn’t A Competition.

I read a great quote online yesterday, which prompted me to write this blog today. It was one of those posters that Word Porn posts daily on my Facebook feed, and instead of scrolling down past it like I do usually, this one caught my eye. Here it is…

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This one really spoke to me, because I feel like I deal with this on a regular basis due to the nature of my disease. And this particular statement I feel like I’ve literally been living.

Rheumatoid Disease has plagued my body for three and a half years now. Endless years, it seems sometimes, that I’ve dealt with this indescribable pain, whom no one can fix. I’ve tried so many medical treatments, pharmaceutical and homeopathic. I’ve attempted every fad diet out there, all proclaiming to be the “cure-all” for my disease. You name it, and I bet I’ve tried it! Even going as far as using essential oils, sleeping with healing rocks, and attempting to meditate the pain away.

I have spent countless hours in frigid medical offices, waiting for yet another “check-up” appointment. Or another visit where my doctor will inform me that now do I not only have the worst case of Rheumatoid Disease for someone my age in Hawaii, but also of all their colleagues’ patients on the mainland as well. Gee, that’s some great news, I’ve always wanted to be the best at something. I could never have imagined it would be concerning a debilitating, incurable disease. I’m so lucky!

I’ve spent more time with my Rheumatologist and PCP than I have with some of my closest friends. Truth be told, that could also be said for most of my family members as well. And I’m not saying that’s something bad, it’s just my reality. My week’s schedule is usually broken down in three main priorities: first comes doctors appointments, then work related training/events/prospecting, then family time, and friends and social engagements can be worked in after that.

If you really look at my priorities, you can also see how important my health is to me. I’m 34, about to be 35 in one month. I don’t want my disease to define me, and to accomplish that, I need to work hard at finding a way to coexist with it. I have to figure out how to live with my disease in a way where it doesn’t rule my life and dictate who I am as a person. And to do that, I am 100% committed to finding a medical treatment plan that works for me.

My second priority is my financial independence. I now receive a small monthly siphon from Social Security, but it is nowhere near enough to live off of. So I had to find a part time job that I could do without hurting myself, or worsening my disease. That came in the form of direct sales with Rodan + Fields, which fortunately fits my needs perfectly. I work from home, hell, most days I work from bed, and I make my own hours. I’m my own boss, and have no one above me causing me stress. It’s almost completely social media and word of mouth based, and works perfectly with my retail background. I’ve only just started, so I’m not making any real money yet, but I will in time, and I’ll be financially secure for my future. And the best part is that I love my job. I love helping people, and making them happy. So, really, it’s a Win/Win.

My third priority is my family. No matter what is going on in one’s life, it’s always nice to have family to fall back on. Spending time with both sides of mine (I was a child of divorce, so I get two), is something I try to make time for regularly. Now, I’m not saying that my family relationships are perfect, far from it. But at the end of the day your family doesn’t change. You don’t get to swap them out if you have a fight, or don’t see eye to eye. With family you’re committed to the good, the bad, and the ugly. And I have dealt with all of those memories from both sides of mine.

Although, this is where the aforementioned quote comes in to play.

I understand that dealing with people with disease is hard for some. Knowing a friend, or even an acquaintance, who is going through an intense medical situation can be tough. Even dealing with a lesser medical situation, like maybe reoccurring headaches or acid reflux, can be hard for some to process. We don’t know how to react, or how much empathy or sympathy to have. It’s daunting for some people to deal with those who are sick. And even more so if we are talking about incurable diseases, cancer, or any other life threatening medical issue.

In my own medical journey I’ve actually lost friends because of my illness. Not because they were scared of “catching it”, Rheumatoid Disease isn’t contagious. But mostly because they were at a loss of how to handle it. They didn’t understand the disease, and why I was so sick, and why after all my treatments I wasn’t getting better. And instead of asking me about it, and attempting to understand what I was going through, or asking how they could be supportive, they instead pulled away. Yes, it initially hurt my feelings, but at the end of the day I have learned that I’d rather surround myself with supportive people. People who want to be in my life, not those who feel they have to be. I think that goes for pretty much everyone, healthy or not.

I’ve personally found, though, that support can be a double-edged sword. You would think that anyone going through an intense illness, like mine, would welcome support of any kind. Through the assumption that any help at all is still helpful, right? WRONG. Support and help is only helpful if it comes from a good place. However, in my personal experience, support is often not without strings.

I welcome and appreciate any kind of support towards my person, my illness, my newfound career, and my journey in general, as long as that support is given freely. What I mean by this is that it’s given without expectations of a reward, or a guilt-laden reciprocation. Just like the quote says, “I don’t engage in acts of kindness to be rewarded later,” I don’t want to receive support with strings attached. An example of this might be a ‘You scratch my back, I’ll scratch your back scenario”. Or making comments like, “Well I helped you with that one thing last week, so….”

No one wants to feel like they’re being used. But expectations put on support is just that. It’s support with strings attached, and I don’t want any part of that. If you need help with something, just ask. But thinly veiling it as “support” basically makes the receiver feel like shit.

If you want to do something nice for me, or anyone, then do it. Not to get something back from it, or to make yourself feel better by showing others how “supportive” you are. If you want to be seen as a good person, then do good things. And leave it at that. Be kind. Be generous. Be good. Not for others. For YOU.

Giving me support in my illness isn’t a competition on who can do it better. The best way to support me while I’m going through this hell is to just be there. Ask me how I am. Ask me if there’s anything you can do. Ask me if I need help. Ask me if I need a ride somewhere. And listen when I tell you. Listen to what I’m saying to understand, not to reply.

I feel like everything has become a lie recently. Like suddenly I’m this vessel to be used to make others look and feel better. Like “Hey, did you notice, I’m being supportive?” Or, “Look at this picture I posted of me being so supportive!”

Supporting me isn’t a competition. I’m a human being, dealing with an incurable, debilitating disease. I’m just trying to make it through each day, each week, and each month, without landing back in the hospital. I just want a life I can be proud of, and get up for each and every day. Want to feel good about yourself, too? Do something good without thinking about who it benefits, and I’ll continue to do the same.