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Painsomnia #TheStruggleIsReal

The struggle with having a virtually invisible disease like Arthritis, is that I think people actually forget that I am a REAL patient with REAL symptoms. 
Although I’m doing really well on my triple-combination-treatment therapy, I still struggle daily and experience flare-ups once or twice a week. 
One of my struggles is sleep. 

These days, I sleep about 4-5 hours a night -if I’m lucky- and my current record for the no-sleep marathon is 42 hours. 
I’m actually quite functional on even 2-3 hours of sleep, as long as I sleep well once or twice a week, but lately, I haven’t even gotten that.

My main problem is stiffness. 
I’m constantly getting in and out of bed just to crack my joints. Last night, I even did some “in the dark” yoga because I was desperate, but no cigar. Even though I lay with a hot pack virtually every single night, it doesn’t quite get me comfortable enough to sleep. I don’t know what the deal is! And the only time I actually can sleep is when my body gives out…at really strange times…like when I’m driving or in the middle of a really interesting lecture or during dinner. No bueno! 

For those of you who know me personally, I tend to typically be a pretty high energy person and oddly enough, that hasn’t changed! I just pass out at inopportune times. Then, after a quick nap, my body is up and ready to go again! You’d think that’d mean that I take naps every day, but I don’t, because I want to SLEEP. AT NIGHT. LIKE A NORMAL PERSON.
I’ve even tried losing weight and working out to help my body feel more tired, but again no cigar!

All this is for the purpose of clearing up any idea that just because I look fine, I am fine. 
I am trying really hard and I do feel pretty great a good majority of the time (You should see all the stuff I can do now! 🙂 
However, I think that a lot of people get the misconception that just because I’m on treatment, I’m cured. This is not true. 
I am a real patient with RA who has to deal with managing a life, despite pain and stiffness. I’m a normal person with an abnormal immune system. I’m still figuring it all out.
 This is simply my journey.

The one thing I hold onto is this:
It is not the problem, but how we deal with the problem that truly defines character. 
My problem is Rheumatoid Arthritis.
What’s yours?

#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. 😉

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

Reconciliation Part 3 Finale

I wasn’t expecting my mom to change. 
So when she did change, it both surprised me and shook me to my core

Recovering from her hysterectomy meant she was in a lot of pain. She couldn’t clean or cook. She couldn’t bend over. She couldn’t wash her own hair or even drive for two weeks
It’s actually pretty similar to what I have had to deal with on a daily basis…

I wasn’t expecting a thank you, let alone an apology. 
But she did. In the most personal way. 
She apologized to me for leaving me alone on a day I needed her most. 

   One day, I began experiencing racing heartbeat (a reaction to one of my medications). My husband was at work and although he did ask his bosses if he could come home to take me to the hospital, they wouldn’t let him. So hesitantly, I asked my mom if she would come over to our apartment and stay with me until Andres could come home and take me to the hospital.

Unfortunately for me, it was the same day as my cousin’s wedding and my parents had already RSVP’d…. That killed me inside, so when my mom apologized for not being there for me that day, I practically broke down

She told me that after this surgery she feels she can relate to me more….
That feeling incapacitated for two weeks made her frustrated. That the pain was exhausting and everytime she tried doing anything, she felt drained and suffered the consequences later. That she hated being so dependent on other people because she couldn’t do anything. That she couldn’t sleep from the pain, which just made her more exhausted. “It wasn’t until I felt the pain and the exhaustion that I realized that this is how you feel all the time.”

Just that little bit of understanding, meant the world to me.. That little bit of validation took years of frustration and resentment off my shoulders. 

And just like my mother’s wounds, our relationship healedIt’s not perfect, but I believe that now, it’s better than ever. 


The whole point of me writing this is as much for myself, as it is to other RAers out there. 
To remind ourselves not to let Arthritis take away our faith or our trust in people. I’ve experienced a lot of hurt because of this disease…and not all of it physical
It hurts when you meet people who don’t believe in this illness that they can’t see. 
Or the people that may make fun of my cane. 
Even the people who seemingly don’t give a crap. 
But I still choose to have faith that through awareness people can understand and accept this Invisible Illness.

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