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#RAgingFatigue

The people who know me best know that I’m like a raging bull. 
Once I make a decision about something, there’s no going back. 
—-This is what my mom says. Hi, mom! 
So, when my Rheumatoid Arthritis came back with a vengeance at age 17, you can only imagine how that stubborn personality translated into a quest for a normal life despite RA. 😉

But this time, it wasn’t the same RA as my childhood. It was worse. Much worse.
This “newer-stronger” RA wasn’t something I could mentally overpower or even something that was responding treatment
No matter how hard I pushed myself, no matter how hard I tried, I just could not keep up with my classmates. I was studying Architecture and it was just impossible to wrap my fiercly swollen fingers around a pencil, let alone draw a floor plan for 7 hours.

And that wasn’t all. 

I had fatigue. Besides the swelling that makes closing my fist impossible, and the stiffness that won’t allow me to sit for more than an hour, and the excruciating pain, I. WAS. EXHAUSTED. 
It’s like having the flu, but worse. I once explained it to someone like this:

“It feels like gravity changed overnight and I feel so heavy and weak I can’t get up.”

And you wanna know what the crazy part is? Even after 19 years of having RA and 7 years of my “RA vengeance” (the more severe version of my RA), I still feel it. 
I still feel the fatigue. I still struggle to get out of bed, to put on make-up, to go to school (different major ;), to travel, etc. I still struggle to do everything.

BUT my stubborn personality won’t let me give up, and I just take 1-3 shots of espresso to get me through the day, and rest up a ton the next day. 
Because that makes me happy. 

Please excuse my yawns. 😉

Nail ARThritis

People don’t realize how hard it is for people like me to do normal  things. 
And that sometimes, we don’t have the option of paying someone to do the things that we can’t.

So yesterday I finally was able to take some time to myself (no laundry or homework or writing or housework, yay!) and what did I do? I pampered myself! Yes, for the first time in a while I got to paint my own nails.

And it felt SO good, not just on the outside….because you all know how good it feels to have your nails done 😉 ….but it felt good on the inside too. 

Most of the time, having Arthritis means giving up what you love. Hobbies, jobs, activities. For me, it’s meant giving up a career I loved, school, and whole lot of independence
But recently, I feel like I’ve gotten a lot of that back. 🙂 

I used to paint my nails every other week, but when I started to deteriorate, doing my nails even just once in a while, was a huge strain. I would be forced weigh the pros and cons each time. Knowing my hands would kill me and my back would be hunched for the rest of the day. I’d enjoy my nails and pay for it later with swollen joints and loads of painAnd some of the time, I’d be worth it. Just to feel human again.

But now, with my treatments working well and fresh from cortisone shots, I’m able to get through it without too many of the consequences. 😉 
It’s still painful and difficult for me to grip the nail polish bottle, but I don’t care. 
Even though my hands shake and I make a huge mess, to me, it’s about more than nail art.

It’s the accomplishment, the satisfaction of being able to do something I haven’t been able to do in a while. 
To be able to do something for myself, without somebody’s help.
To just listen to music and dream while my shaking hands attempt to not mess up. 😉



I would like to stop and thank my friends and family for always helping me do the things
that I can’t. You’ll never know how hard it is to ask for your help and how grateful
I am for your gracious attitude. You never let me feel less than and I thank you for that. 
BUT… it does feel good to be able to ask less often now! HaHa

21 Things Only People Living with Chronic Health Problems Know

To the fighters, toughies, troopers, hooligans featured alongside me: 
Thank you for being so tenacious, resilient, hardy, persistent, 
enduring, relentless, and stubborn.
Thank you for never giving up. 

Thank you for being so damn unshakable.

Buzzfeed | Lliving with Chronic Health Problems

RAConnection

There is something irrefutably amazing about being able to communicate across 
time zones and continents with fighters, survivors – exactly like me.
As you all probably know, right now, there are hundreds of articles expressing that Social Media (or the internet) is replacing our relationships. 

I’ll tell you this, as a 20-something-year-old disabled girl, I beg to differ.

Recently, I wrote a research paper for school discussing this very topic. Being that it was a formal paper, there were a lot of things I wasn’t able to say. 
If you’d let me, I’d like to say those things now:
Having Arthritis is scary.
Just walking into a doctor’s appointment is scary. 
“Is the doctor going to help me?” 
“Is he going to believe my pain is real?”
Being surrounded by patients 3-4x your age that are disfigured, crippled, wheelchair-bound, visibly in pain, thin, and who frankly -no offense- look like they’d be better off in heaven than suffering any longer… is saddening and traumatizing.
“Will I be wishing for death when I’m their age?”
“Will I even reach their age?” 
Again, Arthritis is scary

Even though I still wish I was the only girl in the world with RA, I’m eternally grateful for my #RASisters and my #RADudes.
For me, the Internet is all I have to communicate and connect with people like me and I wouldn’t trade that for anything! 
These men and women, young and old, EXTRA-ordinary people who fight an invisible pain 24 hours a day/7 days a week. Friends, who not only personally know every tear, every pain, every disappointment, but also have the heart to offer comfort and advice to someone else. Friends who are feel like they’ve been run over by a truck, but want to know how you’re doing. Friends who will find a remedy and immediately jump online to share it others.  

Friends, I can’t get over you. And yes, I thank the Internet for that. 
Thanks, for allowing me to make life-long relationships across space and time. 

Absolutely nothing can replace the feeling of relief brought on by a friend 
who reaches out at the exact moment you need it.

Meeting my Rheumy Friends for the first time. 🙂

New Patient ✔

There is something so odd about going to my Rheumatologist, Dr. Weitz’s office and seeing all these people, patients, like me, at different stages in their journey with Arthritis. 

Last Thursday, as I was walking out of Dr. Weitz’s office I noticed that in the waiting room was this woman that I could easily identify as a New Patient. It was so odd to me, seeing her there. I could tell she had Arthritis and something about her made me want to reach out and touch her shoulder and tell her:
 “Everything’s going to be okay. I’m here for you.” 

And to think, maybe she’s experiencing these unusual symptoms for the first time. Maybe she doesn’t even know what’s wrong with her and here she is, sitting in a waiting room with all these “sick people” in wheelchairs and with walkers and canes. How terrifying we must all look to her. How scared the woman must be. I know I was. 

It felt as if I was having a flashback of when I was the New Patient, anxiously sitting in the waiting room -scared to death of what the future might hold. I had so many unanswered questions. Will I be able to walk again? Is this doctor going to help me? How bad is my RA? 

I had had a rheumatologist before, the same one who diagnosed me when I was 5 years old in 1996. But, to be honest, we weren’t getting along. I felt like he wasn’t treating me or at least trying to treat my disease. We disagreed a lot on how well my Arthritis could be controlled. He told me multiple times that I should just accept the fact that I was disabled now. But I wanted to fight back, try any and every treatment available. 
Well, finally, one day, my husband and this rheumatologist got into an argument about my prognosis. We told him we weren’t ready to just “accept it and move on.” I was too young for that! I was 19 and still had many more fighting years left in me. If the treatments didn’t work, fine. But I wasn’t going to give up WITHOUT EVEN TRYING! 

Me, at my first-ever infusion.
So, that’s how I ended up in Dr. Weitz’ waiting room -5 years earlier- sitting scared and confused just like the woman. If I could say anything to her and to other new patients, I’d say: 

We’re all just like you, waiting, hoping, praying, fighting. We’re here for the same reason. To fight this disease and aim for success in better health. We’re here because we’re fighters.



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