I Am a Warrior Princess

Auto immune disease: because the only thing strong enough to kick my ass is me. I was diagnosed with seronegative rheumatoid arthritis (RA) in Nov. 2015, at age 23. This blog is to document my journey as I begin treatment, learn to manage my life with RA, and work my way through the pain to rise above it as the warrior I was born to be, but also to offer solidarity to other RA warriors, as well as promote awareness of RA, especially among younger populations. You can either own it, or let it own you, and I for one refuse to give up.

[rawarriorprincess]

RA is a battle. Chronic pain is a battle. It is a constant battle that you always feel just shy of losing. I hurt my shoulder (pretty sure I slept on it wrong) and absolutely nothing has helped it. I got more and more frustrated as the day wore on, and now I can't sleep. With my RA, I am constantly in a varying amount of pain. Some days are wonderful, and I can honestly say that I am virtually (but never completely) pain free. Other days, I can can barely move. Then there are days like today, where I'm already stiff and achy and then you throw a shoulder that is knotted and coiled with terrible jolts of pain like lightning on top of it all, and it becomes that much worse. My shoulder is like a conduit, amplifying the pain that would usually be an inconvenience and making it ten times worse. I'm so frustrated. My RA is, at times, this insurmountable thing ahead of me. It seems like as soon as I make over the top of one mountain, there are three more in front of me. Sometimes my RA seems so much bigger than I am. It's NEVER going to go away. It's as much a part of me as my skin, my blood, my DNA. I'm only 25, and the pain is already so bad I am so afraid to imagine what it will be like in five years, in ten, in twenty. I'm so overwhelmed. This stupid shoulder shouldn't be anything more than a mild frustration, but for me, it's a dam breaking open. I'm just so frustrated. I keep asking, why is this happening to me? And I don't have an answer, because there is no rhyme or reason to any of it. I have RA. It just happens to people, and it happened to me. I am very adamant about sharing my experience with RA and my chronic pain with the world, because I truly believe that somewhere in the future, maybe it will make a difference, to someone, to me. I don't share my experiences like this to gain pity; it's the last thing I want. But I've shared with you all my struggles in the past, and RA is a multifaceted beast. You deserve the chance to see and understand every side. This is RA. It's frustrating and overwhelming and fucking terrifying. Some days I just wish people could spend a day in my body, and experience the pain I do, not because I'd ever wish it on them (I never would), but just so they could understand how SCARED I am. Maybe that makes me selfish. Maybe it's just wishing for solidarity, for understanding, for community. I don't know. RA is a battle. They do not call us RA warriors for nothing. This, too, shall pass. I know that. I have hope and faith that I will someday understand all of this. I'm never giving up.

[rawarriorprincess]

Fingers

My fingers are aching, bone deep and sharp, tonight Gotta love winter

[rawarriorprincess]

Dancing

I have wanted to learn how to dance for a long time now, but only recently did I finally admit to any one why. I want to learn how to dance - tango, ballroom, waltz, I don't care - because I want to feel graceful. I want to know what it feels like to dance beautifully, before I can't. I don't pretend to not be privy to the fact that RA is a disease, and that it is not going anywhere. The medications treat it, yes, and slow it down, but I'm in my mid-twenties, and I already have it. It's not going anywhere, and it's not going to get better. I can stave it off, keep It stable, keep it stagnant, as dormant as possible by swallowing my meds every day, eating right, exercising...but I can do everything right, and eventually, the RA will still catch up to me. That scares me. I do not like feeling sorry for myself. There are people out there who have been given a much shittier hand than I have, especially where RA and other autoimmune disorders are concerned. But I admit that I'm frightened. I have so much life to live, and I'm terrified that the RA will steal it from me before I get the chance to even taste it. It's not fair. So. I want to learn how to dance. I want to know what that freedom feels like. Is it anything like flying?

[doodlegirll]

Go look up "signs of an RA flare" and you'll find that I am currently experiencing every single one of them

[rawarriorprincess]

Self Care with RA

I know practicing self care with RA can be a tough thing to handle, and can sometimes feel like a chore, especially when you live a busy lifestyle. But practicing self care is absolutely vital to your wellbeing, and making sure you’re properly taking care of yourself should be a top priority.

I know with RA sometimes it can be overwhelming, especially as a young person with the disease. But please try to remember that just managing your symptoms are only one facet to a multifaceted die. And when an RA flare hits, sometimes you don’t feel like doing much of anything except hide under your covers.

Unfortunately, as you and I both know, ignoring your symptoms aren’t going to make your RA go away, and ignoring and pushing self care to the wayside will catch up with you eventually, possibly making it even harder to cope with the frustrations that come with this disease.

Here are some fairly simple modes of self care to indulge in, and to keep in mind when trying to manage day to day life:

1.) Have you taken your meds today? If not, take them! They’re important! 2.) I know that my medication (hydroxychloroquine) has a tendency to give me an upset stomach and nausea if I take it on an empty stomach, and if you know that your medication has similar tendencies, make sure you eat something when you take it! Protein, I’ve found, reduces the likelihood of me feeling nauseous. 3.) In fact, have you eaten today? If not, please eat! 4.) Exercise. Trust me, I know that when you have RA, especially when you’re having a flare, movement in general is the last thing on your mind. But exercise is important! It keeps your endorphins and neurotransmitters (especially dopamine, serotonin, and norepinephrine) up, which helps with pain management! It also helps keep your joints strong and motile! So get up, walk around your house, take the dog for a walk around the block, do some stresses, dance, do some yoga! 5.) Take a hot bath. I take a lot of hot baths, especially when I’m experiencing a flare. I like to pour a cup or two of Epsom salts into my bath water to help ease the aches, especially if my back and knees are achy. Sometimes I put a few drops of lavender or eucalyptus oil in as well, or I indulge and buy a Lush bathbomb to enjoy. 6.) Rest! I know that I am a very active and outgoing person, and I hate to not be out and about. But I’ve found that rest is so so important to my wellbeing. It’s easy, especially when you’re a busy body like me, to get so caught up in going that your forget to slow down until you slide right through that stop sign, and get blindsided. Life rarely slows for anybody, but when you have RA, rest is vital to your body’s wellbeing. Take a day (or evening, of an entire day just isn’t possible, manageable, or endurable) to just sit back and relax. Don’t get out of your PJs, curl up under a cozy blanket and watch a movie with your significant other, a friend, or just by yourself, read a book, cuddle with a pet! Sleep in! Whatever helps you unwind, try to set a little bit of time aside at least once a week to do that. 7.) Have you been getting enough sleep? Sleep is essential to your body’s ability to fight off infections and keep your body healthy. So make sure you’re getting enough sleep! Take a nap every once in a while! 8.) If you’re taking an immunosuppressant, it’s important to remember that you could be susceptible to more common illnesses more often, like colds or the flu, especially if you’re around children often, as they like to share their germs quite freely. So make sure you’re properly vaccinated and wash your hands regularly. 9.) Take up a hobby! Indulging yourself in your interests - be it art, model trains, reading, writing, stamp collecting, whatever - is a good way to keep your spirits up, particularly when the draught of day to day life on top of managing your RA can start to weigh you down. So take some time to try and focus on your interests for s little while! 10.) Drink lots of water! 11.) Talk to someone about your RA. Sometimes it can get really, really frustrating trying to figure out how to navigate life in a world that isn’t designed to cater to those with diseases such as RA. So talk to someone you know you trust, and who will be able to offer your empathy and a listening ear. It can really be helpful to talk about what it is that frustrates you, makes you upset, or frightens you about RA. It’s a weighty diagnosis to have; it’s absolutely normal to feel overwhelmed by it sometimes. 12.) If you would rather be introspective, keep an RA journal! Write about your symptoms, your management, your pain. I know that for me, journaling is an asset and offers me a certain level of comfort human interaction sometimes falls short of, especially when you have people in your life that don’t necessarily understand what you’re going through. 13.) Try to stay positive. I absolutely understand that this an difficult sometimes with RA, trust me. But I’ve found that trying to keep a positive outlook on life helps me a great deal in learning to cope and manage it all. 14.) Be patient! It can take time for your body to start feeling better, especially when taking medication; it can take up to three months for your body to reach baseline. Living with RA is hard, I know. But remember: it doesn’t own you. You can do it. :)

[abbydraws]

Manigong Bagong Taon! / Happy New Year!