"Spoonie" --- Living with RA

People have asked me how it is living with RA. There is no simple answer to that. It’s something you have to experience in order to fully understand it. It’s hard to explain to someone who has no clue. It’s a daily struggle being in pain and feeling sick on the inside while you look fine on the outside. 

First of all, what is RA? Rheumatoid arthritis is an autoimmune disease that attacks tissues near joints and other body parts. The symptoms includes fatigue, joint pain, stiffness, swelling, and sometimes fever. 

It is a constant every day battle with yourself, because not only you feel physical pain, but also inside. You fight for your health. It’s hard to do every day tasks, even getting out of bed is hard in the morning. Because as soon as you wake up, a rush of fatigue-ness and pain hits you. It’s a painful wake up call. Each step you take, you feel a shock of numbness. 

You can’t tell if a person has RA based on their outer appearance —- “invisible illness”. What I can tell you is although it doesn’t look painful on the outside, it is inside. It’s living with constant pain —- small or big, it’s a deep exhaustion that makes every movement you make feel like you’re trying to move at the bottom of the ocean. A person with RA is very sensitive to the weather. They can tell if it’s going to rain later on that day or a few days ahead, because their joints start to flare up badly due to the weather changing. That’s why we are very terrified when the cold season is about to kick in. 

With RA, you have to calculate every minute you go out. You have to think before making decisions. You have to consciously think, “is it worth going out tonight”, “how long will I be out”, “what will I be doing”, “what are my plans for tomorrow”, ect. You have to calculate the time you go out and when to go home, because your body can only do so much.. if you stay out too late, you probably won’t hear from them the next day(s). Some people say that these choices can be negotiable, but it is way more than that. The difference between a person who can do anything and a person with chronic illness is it’s not just about time. It’s realizing what you will be paying for overdoing the next day in pain, the need to sleep all day. It’s an anxiety of deciding yes or no when making plans with people who are not ill. Because they do not understand doing calculations in your head of what time you need to get to bed and if you can stay out that extra hour and be able to function the next day. 

Living with RA, you are very limited into doing things in your every day life. There’s this article, “The Spoon Theory “. It explains how different it is to carry on every day life between a healthy person and a sick person. In the article, Christine (the writer) used spoons as an example of the limitations both people have. For a healthy person, they have endless choices or “spoons”. Whereas for someone who is sick, their “spoons” are limited. For each thing they do, they lose a spoon. And once they run out of spoons, they’re out of energy to complete tasks. 

I have to say, it sucks very much having to live with RA. I can’t tell you how hard it is. Because arthritis is not just a problem with the joints. It’s the sleepless nights consisting of tossing and turning, because of swelling. The chronic fatigue, the struggle of putting up with every day challenges, the “but you don’t look ill”, the “you’re too young for arthritis”, the missing out on parties, the knowing that there’s not cure for it; yet you still hope. The injections and blood tests and drugs and scans. The continuous of trying out new treatments and medications. The missing out on things with your friends, the medication which makes you sick, the tears and stress, the anger you feel when you can’t do a simple task, and the indescribable pain.  

A person with RA don’t look sick, but you’ll never know the struggle beneath the surface.

Proving other people wrong

I know this sounds bad, but the feeling of proving someone wrong is a great feeling. Throughout these few years, there has been doctors who have underestimated me and my health condition. They think I’m not able to do certain things. They say it’ll take years and years until I get better. And when I tell them I don’t believe it will take that long, they laugh. But it’s whatever, I just keep a smile on and believe in the best. These past few years has been a struggle finding the right doctor who knows what they’re doing, finding the right medication, trying out new treatments. And finally, earlier this week, I received great news. And I have a feeling this will be the one. The right one. And I will get better. I know it. I’m going to get through this. I know the next few months will be another struggle, but once it’s over, it’ll be worth all of the endurance, patience, and hope. 

Goal

I’ve been wanting to go to Bethel in New York for so long. It’s the first place on the list on different places I want to visit. I’ve made it a goal for next year. I told myself if my health improves, I will get a group of friends to go to Bethel either in the Spring or Summer of 2015. So in the meantime, I will do my absolute best to keep up with these treatments and continue being optimistic. I have a good feeling I will get so much better very soon, especially after this morning’s Doctor visit. I am very happy with some of the results. It’s going to be a hard journey, but it’s all about being strong and putting up with it, accepting what can’t be changed. 

Friends

I often think about my friends and the people I surround myself with on a daily basis. I like to think about each individual as much as I can. From their likes and dislikes. What they enjoy doing, music they listen to, and even their family. It’s kind of like a quick “catching up” with both myself and my relationship with other people.

Some people, I can hang around with, but only for a short period of time, before things go downhill. And others, I can just spend days with them. It’s amazing how you can meet someone and be friends with them, feeling like you’ve known them forever. I love those kind of people.

Don't rush

Seems like most of the time, people search for love. They go out trying to find “the one”. In the wrong places, wrong time, with wrong people. They go on this journey trying to find that one person who takes their breath away and sweep their feet up. The one who will understand them, respect them, love them, for who they are.
But with love, you have to be patient. Instead of searching for it, let it come to you. Don’t chase it. Sounds cliche, but to me, I honestly believe the best loves are the unexpected ones. The ones where you’d think back and be happy you waited.
Because what if searching for love could cause you to give up on it?

Little things

I don’t know if I’m the only one, but I love it when I catch people doing the simplest things. Like, reading a text and a smile crosses their face. Laughing out loud to themselves while reading something on their phone or computer. Or how they get all excited when walking into a Starbucks. When they have headphones on and just jamming to a song they’re listening to. Friends squealing when they see their friends and just run up to them with a big hug. That smile at a retail store when they look at the price tag. When someone is really into reading their book. That small gasp when someone tastes something really good.

I love seeing all of those little unexpected reactions in life. 

Happiness in giving

Somebody asked me this today, “Why do you give people things and pieces of yourself out so much? Why do you still do it when you know they won’t do the same back?" It made me think for a few minutes. 

Yes, I do give myself out to people. Yes, I do give people things. But I do it out of love. I never —- not once ever expect anything in return from anyone. Why? Because when you give someone something, whether physically or just giving them your undivided attention and time, you give them love. And what’s better than that? And when you do so, all you and that person will get is happiness. I believe everybody deserves to have some sort of happiness. And everybody has the power to do that. So use it to your best advantage. 

I know it’s arcane, but that’s how I feel. I’m an amative person. And I think if you’re a broken soul inside, giving will help a lot. There are so many ways. A gift, your time, your presence, ect. Because when you give, the result will be happiness. And that happiness will fill up your gap. It may not fill up completely quite frankly, but it will be better to be filled with a bit of happiness than sorrow. 

I know people probably won’t do the same for me, I’m not asking them to. People say that’s what makes you frangible, I understand. All I want is to see that smile on their face. Perhaps that would be the only thing I want to receive back. 

As long as you’re giving wholeheartedly and not expecting anything in return, you will not be disappointed. 

:')

I took the chance and ordered food in Spanish: seis tacos de pollo desmenuzado con todo. Y una horchata.

Also managed to say, I need to get my engine checked! And people understood me. I am so happy.

I feel accomplished.

Parents

I think most people take their parents for granted. They do not value their parents and their knowledge of life. Yeah, they can annoy you and don’t understand the fads that’s going on nowadays and are always old fashioned, but that doesn’t change a thing about being your parents.

I believe it’s very important to continue loving your parents and take their interest at heart even when you’re old. They’ve been there for you so much. Parents work so hard to keep their child/children the things they need and wants. And it will never end. No matter how old you are, they will always care about you and try to give you what you need. That’s why I never understand why there are people are neglect their own parents, people who have worked hard to take care of you.

Instead you should respect them for the hard work, love them for the care they’ve given you, and honor them for the life you have.

thoughts

Lately I’ve been in the kitchen more than usual. I really enjoy it. I’m always out and about so it feels really good when I’m home and have the kitchen to myself. And man, once I start cooking.. I cook. There’s like, no stopping me. I love that about myself. I have this dream of having my own cafe one day. I’ve had this dream for quite a few years now. And I’m working my way up to it. Because I know for sure that I will succeed in business like this, especially when it comes down to food. There’s just something about cooking. It relaxes me. So when I’m stressed or have something on my mind, the kitchen is my playground. 

But the funny thing is, no matter how much I eat.. I don’t gain. I know people say that’s a good thing, but to me; it’s bittersweet. Because I want to gain. But then again, I also like how I don’t gain. I don’t know. I would like to have some meat on me. I don’t want to be a walking chopstick. 

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