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WALK TO CURE ARTHRITIS #TEAMACHE

Walk to Cure Arthritis | 5K Walk Event | The Young Face of Arthritis #TeamACHE

It still astounds me when someone tells me they didn’t know that young adults and even kids could get Arthritis.

As most of you know by now, I was diagnosed with Juvenile Rheumatoid Arthritis in 1996 when I was just 5 years old. Now, I’m 26 years old, in college, married to the love of my life, and currently disabled because of my RA. Still, I’m determined not to let my disease stop me from achieving my dreams and hopes for the future. It may sound silly, but my biggest goal for a long time has been to get healthy enough to get a job! Some days I can do things almost like a normal person, but consistency is a really big obstacle for me. In 2012, I got laid off (from a job I loved! Management at Restoration Hardware) right after Enbrel stopped working for me. Since then, I’ve really struggled to find a treatment that works consistently well, has manageable side effects, and works for any length of time whatsoever. I’ve also been diagnosed with a few more diseases and syndromes while looking for my “miracle drug” including (but not limited to.. lol) Gastroparesis, Polycystic Ovarian Syndrome, chronic pain syndrome, and Cushing’s Syndrome. The last one is the most recent, actually being diagnosed last Monday…more on that later. *eye roll*

Although most people long for retirement, for me, working is something I miss dearly. I always say, mind is perfect, but my body can’t keep up and that is insanely frustrating. A CURE could help me accomplish this dream to be healthy, stable, and employed! 🙂

Arthritis is the #1 cause for DISABILITY in America today and contributes to approximately $80 billion in medical expenses and $47 billion in lost wages. The total cost to society in the United States is around 1.2% of the 2003 U.S. GDP. Donating today not only helps those of us suffering with Arthritis, but society as a whole. Millions of Americans trapped in their malfunctioning bodies could be contributing in cutting-edge fields such as mathematics, healthcare, science, technology, and business–if only we had better treatments or a CURE!
The money raised in this walk will be donated solely to research. PLEASE consider helping young folks like me hope for a cure!

*I joined the Arthritis Foundation’s Walk to Cure Arthritis to help the more than 50 million Americans and 300,000 children with arthritis live better today and to keep the Arthritis Foundation’s promise of finding a cure for tomorrow. Your support provides people with arthritis life changing resources and information to manage their disease and improves access to the critical medications they need to live full, healthy lives. The impact of your donation doesn’t stop today, it also helps fund cutting-edge research to identify better treatments and a cure. Written by the Arthritis Foundation

JOIN MY TEAM OR SPONSOR MY WALK @THE YOUNG FACE OF ARTHRITIS #TEAMACHE A.C.H.E stands for Arthritis Can Hit Everyone

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

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