Thursday, 19 July 2018

Learning to Live

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Being diagnosed with a chronic illness is so life-changing. For some, things change rapidly. Some of us suffer for years, feeling the change slowly but surely. But regardless of how it comes, we all mourn. We all deal with change and long for the life we had before.

Sometimes, I think that reality is easier to deal with than the "what if's." While I completely accept the condition of my body and what might happen later, it's painful to think of what might've been if I never developed psoriatic arthritis as a child. If I had never developed an autoimmune disease, my bones would still be strong. I would never have to take medications with overpowering side effects. And my parents would never have gone through the heartbreak of having a child suffering in pain.

My passion

But of all the "what if's," there is one that haunts me daily; what if arthritis prevents me from meeting my full potential as an artist? All the other questions seem meaningless compared to this question.

I've always loved to draw and craft. Since I was very small, my parents were awed by my talent. Art was the one thing that comforted me through my diagnosis, all the treatments, and even during relapses. It's what I choose to pursue in high school and college; it's my livelihood. But arthritis is a cruel disease, and it affects everything. Especially the things you love.

Held back

My condition frustrates me daily. I'm far more clumsy than I should be due to stiff, painful joints. And nothing frustrates me more than seeing my clumsiness reflected in my artwork. I dreamt of being a photo-realistic artist, and though my work is delightful, all the smudges  and crooked lines means it will never be as realistic as I'd like.

There are days I look at all my past work, and while I appreciate it, I wonder if it could've been better. Scratch that- I know it could have been better if arthritis never stuck.  . If my hands were stronger, my lines would be tighter and proud. If my shoulders didn't scream in pain, I would have fewer unfinished sketches. If I was stronger, I would've been able to pursue my new found love of sculpture. But pain and weakness forced me to put down my pencils and rest. And I wonder how much better my work would've been if I were healthy.

Finding the light

It's so easy to feel down when you imagine the life you could've had if chronic illness didn't strike. But here's the thing- there are no guarantees in life. You never know for certain what might've been. All we know for certain is what happened, and how we want to move on from there.

Happiness can be hard to find in dark times, but it's so important to hold onto the positives. Dwelling on the negatives won't take away the pain, and I dare say it'll make it worse. In the words of John Lennon, life is what happens while we're busy making other plans.

Our unique style

Few worldly things truly make us happy. At the end of the day, it's love and enlightenment that fulfill us. We cannot have a happy life if we're always pining for something that never happened. Instead, we need to embrace our abilities!

Even though I've been very insecure of the mistakes, shaky lines, and other flaws in my art work, many people in my life love them. My art is so uniquely me, and has my own style. I didn't enjoy art as much when I focused on the mistakes. I only felt confident when I choose to embrace  it as my own unique style.

We can grow

While I do still mourn my "healthy life," there are times I'm thankful for the experiences I've had. Being chronically ill has given me  so many unique experiences and opportunities to grow from. There's no doubt that it's made me a more empathetic person. It's made me learn that a good friend is more precious than any jewel.  And I doubt I would've found my love of writing if it wasn't for starting this arthritis blog so many years ago. It might not be much, but those are the things I hold onto on days the pain is unbearable.

So maybe the chronic pain will prevent me from reaching my full potential as an artist. But that knowledge will never stop me from drawing. If I quit something everytime my arthritis got in the way, I wouldn't have accomplished anything. Life is meant to be enjoyed one day at a time, and embraced as our own unique story.

Sunday, 30 April 2017

From the Heart

I think this past academic year has been the oddest of all. By no means was it a bad year. But it certainly was taxing, and I did more growing up than anticipated.

My mum had a heart attack in the beginning of October. We didn't see it coming, and it came in the typical fashion with women- quietly, and appearing to be a case of the flu. Even though it happened at noon, nobody called me until 7 pm, the time I finished class that day. My mum was very clear that I was not to be told until after class, and even as I talked to my dad on the phone that night, I could hear my mum saying "she's supposed to be hanging out with her friends tomorrow, tell her to go hang out with her friends." Rest assured, I did not go hang out with my friends the next day.

Thankfully, my mum is recovering; it takes at least a year to recover from a heart attack. As soon as she could, she sent me from her hospital room back to college. My mum is so adamant that I never stop my life for her. But it's really hard to try to concentrate on homework when all you want is to be at home. And it wasn't even just that I wanted to be at home, it was that I was afraid to be away from home. I didn't want her to be alone again. I wanted to be at home taking care of my mum, helping to find recipes for her new diet and going on short walks. 

People with psoriasis and psoriatic arthritis, like my mother, are at a higher risk of cardiovascular disease and heart attacks, and my family is not an exception. It's a rarely discussed fact of psoriatic disease, but one that is prevalent and needs to be focused on. Chronic inflammation is not good for anyone's body, and we need to be more in tune to what it can mean for our health. That's why it's so important to keep psoriasis and psoriatic arthritis under control. Unfortunately, most dermatologists and rheumatologists don't screen their patients for metabolic issues such as high blood pressure, even though cardiovascular disease is the leading cause of death in people with severe psoriasis and psoriatic arthritis.

I've always believed in the power of patient advocacy and education, however I believe in it now more than ever. Looking back, there was some indication that this was coming. As a patient, you have a right to know what's going on with your health- even if it's just a quick note of slightly elevated blood pressure on your chart or your blood work beginning to show signs of insulin resistance. You also have the right to ask for additional testing for metabolic diseases, even if you don't show signs yet. These things often creep up over time, and can get out of hand very quickly.

Life has changed so much since October. I've learned a lot about life too, and I think my outlook on most things have changed. For so long, I was so wrapped up in obedience, fear, and toeing the line that I forgot to breathe, take life for what it is, and to open doors rather than close them. You have to love like there's no tomorrow. I find life to be a bit quieter lately, but because I've decided to take paths less traveled. But not only that, it's time to respect the santicity of life- and for my mum and I, that means taking time to care for the heart.

Saturday, 28 January 2017

Love's Sting

The older I get, the more my feelings on dealing with a chronic illness change. When I was a young teenager trying to cope with my new diagnosis and the severe impact of treatments on my life, I dealt with hopelessness and despair on nearly a daily basis. As I got older I realized I needed to change my attitude about it because I knew it was something I was going to have to deal with for a very long time, if not forever. Though I naturally do still have moments of hopelessness, generally I try to stay positive about my situation. If anything, having arthritis is quite a joke between my friends and I. But ultimately, I'm honest about it with most people.

At least, that's what I thought until recently. Though I think I'm very open and honest about living with a chronic condition, I realized there is a certain population I hide it from. And it's certainly the population I should not hide those things from. That group would be the people I've dated.

I think the temptation to come off as perfect and having no issues is so strong when you're beginning to date someone. The thought of telling them you have a life long illness can be very off putting. Personally, I do mention I have arthritis, but often don't go terribly into detail. I'm afraid of scaring the poor guy off, because it seems the general opinion is that most people want to be with a partner who is healthy. I can't speak for everyone, but sometimes I feel embarrassed or not good enough- who would want to be with a woman who is in constant pain, has issues with her hips, and takes medications that are outrageously expensive? Will he run off, thinking he'll become my caregiver? Will he automatically write me off because I'm not in perfect health? Is he going to assume that one day (in a very, very long time) the medication or deterioration to my hips will mean we could never have a child (truth: most women with arthritis can successfully have children)?

But those are my thoughts- not his. You can't tell what the other person is thinking, and it's never usually as harsh as you think it will be. If the person truly loves you, they will understand. It doesn't mean it won't be hard on them and they won't struggle, but they'll try. It doesn't mean everything is going to be perfect, but it means true love deserves a fighting chance.

I'm quite fortunate that my boyfriend is so supportive. I wish everyone felt so supported and accepted by their partner.

I do highly recommend that when you start dating someone new, you ease into telling them about it. It can be hard to receive it all in one sitting. Maybe not the first date, unless it comes up, but soon after. It's a really good way of seeing someone's true colors early in a relationship, but I also think it's something they should know. I would want to know if the person I was dating was dealing with a chronic illness, I'd hope they would feel safe to confide in me and not hide such a part of their life.

Dating is a tricky thing. Dating with a chronic illness is even trickier. But it's possible, and there's no reason why you should ever feel discouraged. There are times it will be hard, but what relationship is perfect? You don't love someone because they're perfect, you love them knowing that they are not.

Tuesday, 23 August 2016

Be Not Afraid

This summer was a time for my body to recover. After having had a very difficult past few years with various arthritis treatments, I decided to detox (with permission from my doctor) and try to treat it through diet and strength training. But, while I was doing that, something else was brewing. Over the summer I developed a lot of abdominal pain and pressure that came with eating, and I've quickly become underweight. We don't quite know what is going on but thankfully I have the support of so many loved ones and a wonderful team of doctors. Recently after all my blood work was found to be clean, I found out I need to have an upper endoscopy (when the esophagus and stomach are examined with a scope).

Regardless of that, I truly feel my body healing. Having cut out certain inflammatory foods, especially coffee and excessive white sugar, I feel such a drastic change. My tendons are no longer tender and the extra fluid on my joints have vanished. For the first time in a very long time none of my joints are swollen! With minimal strength exercise (I'm trying not to burn the calories I'm barely consuming at the moment), my range of motion has greatly increased. I'm not as stiff as I once was, and feel myself moving so much freer and quicker. I feel free.

So much attention is being focused on the negative part of my health right now, and rightly so, but I can't help but rejoice in my healing joints. And I'm so excited to continue forward and experiment further with my own diet, adding and subtracting to see what works. I cannot wait to begin to walk and swim more once I can begin consuming more calories. I've even decided to put my cane into retirement. God willing, permanently.

But overall, I'm feeling good. Maybe not physically well all the time, but mentally I feel very positive. I'm taking care of myself, and seeking help when I cannot do it alone. And it feels amazing to do that. I did feel very discouraged for a while dealing with my new symptoms, but I realize that there is no reason to. I'm just trying to move forward- I've been through worse before, and I can get through this too (with lots of self care, of course). Maybe I feel more empowered realizing I have so much more control in my health than I initially thought, or perhaps it's having such wonderful support. Either way, I truly believe everything will be okay again soon.

Sending lots of gentle hugs and all my newly acquired extra spoons to my spoonies today. 

Sunday, 10 July 2016

A Goodbye to Coffee

When I was thirteen years old, my mum and I had a very steady weekend routine. Right after school on Friday, we would go to my doctor’s office where a nurse would give me an injection of methotrexate. It wasn’t a huge deal, but I began to dread Fridays because of the medicine’s side effects. A lot of people with autoimmune arthritis do very well on methotrexate and go into remission. But I didn’t. I remember the doctor often telling me that the medicine “had better start working soon, because [I] won’t like the next level.” It was horrifying to hear this as a kid. I knew it wasn’t my fault, yet I blamed myself. It felt hopeless; if the medicine that worked for everyone else failed me, what would that mean for me later on?
But years later, I realized there was no reason to feel hopeless.

I’ve seen many different doctors since, and I’ve found that there’s no one way to treat chronic pain. But the most successful approach I’ve found is to treat the person, not the disease. The outcome is always better when the goal is to care for the person overall. You can certainly put your hand over the wound to stop the bleeding, but you need to uncover it and let it bleed a little as you stitch it up so it heals.

I had always been very skeptical of natural or alternative approaches to treating chronic pain. Maybe it’s because those ideas were never brought up with the doctors. But I really was holding onto the hope that there was a medicine out there that would bring me to remission- that all the pain of trial and error with medications would be worth it one day when I found ‘the one.’ And to try a different approach would make it all for naught.

It was extremely inspiring to read and follow Rheumatoid Arthritis Guy as he changed his life by deciding to keep on walking and eat cleanly, especially after his intense battle for medical care. And I began to wonder if that was something I could do too. It made sense to me that healing the body would stop the pain. But it wasn’t until this year I began to feel called to try it, after having too many issues with exposure to infection that I went without Enbrel for a few months.

For the past few weeks, I’ve been adding in recommended strength training and limiting ‘inflammatory foods,’ just to see what happens, and it seemed to help a little. But it was when I completely stopped drinking coffee that I found a lot of relief from pain and stiffness. By no means is it a cure, but it makes me hopeful that I can take my health into my own hands.

So while I’m not advocating for people to stop all medication and drop their rheumatologists (that can be very dangerous), I am advocating for people with chronic pain to hold onto hope and never give up. What I want is for everyone to know there’s always another option, even if it doesn’t seem clear at first. Don’t be afraid to try something new. And never, ever put yourself down because a treatment doesn’t work for you. 

Super inspirational sunset

Wednesday, 15 June 2016

Grant This Weary Heart Rest

     A month ago, I remember putting my hand over my heart; I could feel it racing, pounding, and skipping beats. It was worn and tired, and so was I. The weeks leading up to that moment were brutal. For six weeks, I was lucky to get four hours of sleep most nights, and all my waking hours were spent stressed and working intensely for finals. Most days, I didn’t really talk to anyone and I skipped meals to accommodate more working hours. Ultimately, I was running myself into the ground. And I didn’t care.

     But then came that moment, when I realized my heart was struggling from the stress. A long night in the emergency room made me stop working for the first time since March, and forced me to be still and reflect on my actions. I stared at the monitor that showed a heart that was trying so hard to slow down, and I thought about how cruel I’ve been to it.

     It’s been an extremely hard year. I would love to sugar coat that statement, but I owe it to my aching heart to be truthful. Since June of last year, I’ve encountered so many challenges that truly took their toll on me physically, mentally and emotionally. I’m very tempted to say it was the worst year of my life. And instead of dealing with it, I pushed myself to work to the brink of exhaustion; overachieving at school was the only outlet this restless soul had.

     During the year, I frequently whispered a desperate prayer: “Lord, grant this weary heart rest.” Yet, I refused rest when it came my way. Because I knew that to rest meant to heal, and I didn’t feel ready yet. It was so much easier to ignore dealing with the scars that made my heart ache and race with fright. But I realized there was no escape when my heart quite literally told me how tired and weary I was, and that it was time to have rest. It was time to start feeling better.

     Today, I put my hand over my heart; what I felt was a gentle and steady rhythm. Four weeks is a very long time ago: Since then, I’ve been at home and been so lovingly cared for by my parents. For the first time in months, I can rest privately, and I’ve benefited from the restorative powers of sleep. I’ve gotten to enjoy the warm weather and let the sun kiss my face. Every so often, my best friend comes and takes me out to my favorite places. I don’t venture out too often at the moment though, because I’ve found such comfort in the refuge of the peaceful quiet of my home. Just last night, I picked up some colored pencils to draw for fun for the first time in a year.

     I’m happy. And for the first time in a while, I feel hopeful. There’s so much I’m looking forward to this summer. I’m glad that I’ve finally gotten time to recover, and fill up my cup again. I want to start writing and drawing again soon, because I’ve missed those things so much. And I’ve found myself moving away from the things that once hurt me, and becoming closer to the ones who helped me through it. My heart still sometimes beats quickly, but it does so with the strength training I’ve taken up so I can feel stronger than everything that’s happened.

I’m healing. I’m happy. And I am hopeful.

Friday, 11 March 2016

What Really Grinds my Gears

You know what bothers me? Like, really grinds my gears? When I'm walking in a huge crowd of friends and nobody thinks to slow down to my speed. Do they really think I'm being anti-social and just want to watch everyone in front of me enjoying themselves? HECK NO! I want to be the leader of the pack, enjoying myself with the rest of those beautiful people who are not cherishing their youth nearly as much as they should be. But no- I'm walking in the back, all by myself watching. And I'm usually a good distance behind where you probably don't know I'm with those rowdy hooligans- when in reality, I'm one of them!

Even when I've got my dumb cane with me, I usually get left behind in the back. I mean, it's bad enough to leave the girl who walks like grandma trailing a couple yards away but it looks really bad when grandma's got a cane, too. Not to mention a little dangerous, don't purse snatchers prefer hobbling grandmas to groups of university students?

Getting left in the back hurts so much because not only do I have to watch my friends having fun without me, but the only things I'm thinking about are how I would love to collapse right where I am and how nobody would notice if I did. I'm not  going to lie: being 19 and having chronic pain makes me feel like a freak and unlovable. And being kept at arms distance away reaffirms this feeling.

I know it's not purposefully done. To be honest, I bet they never really thought about it before or noticed. Or maybe they noticed, and just didn't think it bothered me because it's 'my normal.' And I know that I probably don't appear to be in a good mood when I begin to trail off, so if one does notice, they probably think I just need to be alone. I really don't expect my friends to understand, and I don't want them to be able to understand either. I just wish I didn't have to be alone.

Sometimes I wish someone would slow down. That's all I want. Even when I don't feel good, I just want to be included. I already feel really isolated in lots of small, stupid, and seemingly insignificant ways, but being left alone on walks home is the one that bothers me the most. I don't know. It sounds kind of dumb when I write it, but I know I can't possibly be the only person in the world that wishes their friends would take a slower pace so no one would ever have to walk alone in life.