Transformation

It’s been almost two months since I made the huge decision to quit Prednisone, a steroid that I have been on for five years. Five years of slow but sure weight gain. Five years of my body using the drug as a band-aid in attempts to mask my pain but not help it.

There have been times in the past two months that I’ve seriously considered going back on it. There have been moments where I realized what a strong band-aid it had been, keeping me more mobile when I was on it than I am now.

But then there are days like today, where I look in the mirror and see my body’s relief at being able to lose what it had gained. I may still have pain, I will always still have pain. But at least I got my body back.

And that’s good enough for me.

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Why social media is crippling me mentally (a rant)

We live in an age now where everyone is addicted to social media, and the majority of life is connected to the internet.

When I was growing up, if I wanted to spend time with friends my mom would drop us off at the local pool, or we would go out and climb trees, play hide and seek, or play Monopoly. Thirty odd years later and spending time with friends means playing video games together, or going to a friend’s house where you both get out your tablets and ignore each other while sitting three feet apart.

I walk past restaurants and a family of four all have their phones out, addicted to checking social media and taking pics for Instagram and Snapchat, and ignoring everyone else at the table (not that anyone else would notice). I had coffee at a cafe the other day, and after paying I was told not to come again (as I’d have expected from the past), but to “follow” them on social media. Um ok…

Why does any of this pertain to being chronically ill you ask? Just this, in an age where addiction to the internet and “having to know everything” is commonplace, the world has lost its common courtesy. Let me explain…

Remember when it came out that Lady Gaga was chronically ill? There was an article about it in Arthritis magazine, leading many to believe she had Rheumatoid Arthritis. As a fact, she does not have RA, she’s got Fibromyalgia, a completely different disease. But following all the online sharing about how amazing she is was a slam against the rest of the arthritis community. Comments like “If Lady Gaga can push through the pain, why can’t everyone else?” Or, “Obviously she can handle it because she works out so much”. And my personal favorite, “You’re just not trying hard enough to be well”.

What was equally frustrating was if anyone did any real research regarding it that would find that Lady Gaga has in fact cancelled shows because of her disease. But that’s not the front social media shows us. They show someone “chronically ill who’s winning at life”. Thank you internet, for making the rest of us look like assholes. Like not making any comments about how her abundant wealth could afford such a lifestyle with concierge doctors, personal trainers, nutritionists, and cooks. I could maybe be winning at life if I had those too, thank you very much.

Then you’ve got those great internet ads that pop up telling you anyone with moderate to severe RA can live a normal life if they take this [insert drug here]. They show thin models lying on boulders at the beach with not one crippled knuckle in sight, telling the world that they’re basically cured.

God, that pisses me off!

Could we have a realistic commercial just once? Show an over weight woman (cause we all gain weight on those damn drugs), who has maybe just had a knee replacement, and the drug she’s tried has helped her be able to do household chores like laundry again. THAT is a realistic RA drug commercial.

But no one will see that commercial, because that commercial will never be made. Which means that all those healthy people who don’t have RA will see these ridiculous commercials with thin and fit apparently chronically ill people, and wonder why their friends with RA don’t try hard enough. They picture us sitting around all day, eating and watching tv, living off disability, and not attempting to get better.

Then they see those shareable links on Facebook about how people living with chronic illness would be fine if they just ate vegan, or tried cannabis oil, or joined a gym, and they send it to us with a ” have you looked into this?” Everyday. Every single day, I have an email, or a message on Facebook or Instagram, with a link.

Not one day goes by that it doesn’t feel like a slap in the face. Just because there’s a share link on the bottom of the page, does NOT mean you have to click it. Just once, before you feel that uncontrollable urge to share your opinion on someone else’s health, please just think. Think for a moment that if you were ill and you’d done all you can to find a cure or a way to better your situation, would you like people who don’t know your situation to send you “tips” on how to get better? Because I guarantee you, you wouldn’t.

If you really want to help someone, send them a card -and no not a damn ecard -like an actual written card. Pick up the phone and ask how they are doing, if they need help, or how their treatments are going. If you see something online and you feel like you should “share” it, why not instead read it yourself, maybe learn something for YOU.

This rant may be starting to sound like I hate the internet, but I use my iPhone as much as the next guy. I like Instagram, and I enjoy talking to friends on Facebook. But I don’t use it to make myself sound superior. There’s a line that need not be crossed, that a lot of people like to speed over. It’s the “I read this online so I’m an expert now” line. And oh how I wish that people would take a moment and think before those words come out, or that share button is clicked.

Can’t we all just take a moment and be humble. Put down our electronic addictions and read a book, have a conversation, and just be.

Taking My Body Back

It was just over five years ago that I woke up that fateful morning, attempting a good stretch, but screaming in pain instead. That first morning when I basically woke up with severe Rheumatoid Arthritis, my life changing forever.

It was just over five years ago, when finally being referred to a Rheumatologist, I was given Prednisone. I thought my worries were over with the miracle drug that took away my pain so quickly. Only to learn how horrible and painful my life was still to become.

It’s been five years and I’ve taken almost every drug on the market for Rheumatoid Arthritis. I’ve tried several rounds of TNF blockers and biologics, in pill, injection, and infusion form. And all the while I stayed on Prednisone. Five years and pounds of weight gain.

I tried to get off it a few times, but my doctors wouldn’t let me. They told me I needed it too much, or that it would make me sicker. Sicker, really? From Prednisone alone I developed severe Osteoporosis and Lymphoma. How much sicker could I get??

Well, two weeks ago I decided enough was enough. Sick of the weight gain, and the pain that I still have despite being on damn Prednisone for FIVE YEARS.

I didn’t consult a doctor, I did my own research, and I took back my body from those who thought to rule it. No one knows my body better than me. I did my own taper schedule, and I successfully quit Prednisone.

And next time they decide to tell me what I can and can’t do with MY BODY, their words can go to the same place my unneeded Prednisone went…with a flush down the toilet.

I am whole

My mother was a child of the 50’s, and raised by her mother with certain ideals in her head. She passed most of these on to me, and I followed them with diligence, all except one. In the 50’s women were raised to look for a man to support them in life. Someone who would marry them, have children with them, and basically be their “other half”.

I could not follow in my mother footsteps here. I never thought I needed a man (or anyone) to complete me. I didn’t need to find my other half because I wasn’t a half. I was whole. I only hoped that one day I would find someone(s) who valued me for my wholeness and accepted me, including my flaws and everything that made me the whole person I was.

There have been many that have come and gone. I have also spent many years wondering if I could even hope to find someone(s) to accept parts of me, let alone the whole of me.

I’ve come to realize that we as humans seek perfection where it doesn’t exist. We look for the counterparts of ourselves even when we swear we don’t need or want them. We want our partners to be an ideal that doesn’t exist. And yet we push our way through relationships intent on getting what we want, despite our unrealistic expectations.

Perhaps in this next chapter of my life I will remember that perfection does not exist. I will remember that we can’t have our cake and eat it too. And that compromise doesn’t mean sacrificing who you are.

I will remember what I am worth. I don’t need to find my feet, because I’m already standing. I will remember that giving someone my heart doesn’t mean they will accept it, and that that’s ok. I will remember that I am beautiful. I will remember that I am strong. I will remember that I am a whole person.

The Choice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Why

After you’ve been sick for awhile you start to be confronted with questions from those around you. See, despite their desire to be supportive, most won’t really understand. Some may not even believe you, not that they would admit that to your face. They look up Mr. Google and find what they want or would prefer to believe.

That’s when the “cure” conversations start. We all know which ones I mean. The diet fads, the magic moon rocks, and the stories of their sisters best friends cousins hairdresser having what you have and was cured by wheatgrass juice. As if we haven’t tried everything under the sun not to feel this way. As if all of us chronically ill would rather live in sickness and pain than live a full healthy life.

Just a heads up for those of you reading this that are in that group.. We do not sit on couches watching Netflix all day and eat bonbons. Most of us can’t work because it’s too hard to stand/sit all day and not be in pain, or fall asleep. In 2014, my employers forced me onto disability because I didn’t want to stop working. Having to file for Social Security was one of the most humiliating things I’ve ever gone through. A 33 year old women standing in court begging for someone to help her before she ended up living in a box.

FYI: NO SELF RESPECTING PERSON WANTS TO GO THROUGH THAT.

If only you could see how often we wonder why this happened to us. Those of us who were healthy and fit when we were diagnosed…we struggle with what our bodies have become. We can’t exercise, we can’t sleep, we gain weight, we lose it, and it’s nothing to do with our diet. Our bodies are destroying themselves from the inside out and we are forced to watch.

So before you ask someone “Why are you sick?”, maybe take a moment to think about what you’re asking. How can you judge us and our bodies when you have no idea what we are going through? How do you expect us to answer when our doctors can’t even explain why.

I have Rheumatoid Disease, Osteoporosis, Lung Disease, and Lupus.

Why? Well, I don’t know. Wanna know what I do know?

I know there is no cure.

I know that I may live a shorter life span.

I know that my body can only survive with chemicals that are poison.

And that I am doing the best I can with what I have and what I know.

That’s The Why.