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Friends

The following post was written on my facebook page following my uncle Kevin’s shooting on June 11, 2018. Kevin Valencia, a police officer, was 27 years old when he was shot in the head after responding to a domestic violence call where 4 young children were held and murdered. He is my hero and I’d like to keep these on my blog as a tribute to him.

As of February 9th, 2019, Kevin is still in a coma. Please pray.

Last month, right after arriving in Miami following my uncle Kevin Valencia’s accident (and our midnight rush up to Orlando), I raided my mother’s stash of childhood pictures and separated all the ones with Kevin. There were hundreds of pictures, dating back from the time he was a newborn, but still, I felt like some were missing…

My mom admitted she had gifted a lot to Kevin after his wedding to Meghan and hadn’t made copies, so begrudgingly I swore that I’d return her originals after my husband, Andres made copies. Then, I’d keep the copies. 

Well, at this point (and over a month later), I’m still vaguely irritated with the fact that I don’t have ALL the photos, but satisfied with my hefty haul. So, last night, I went to my parents’ house and went about cleaning out another area I had long since promised—my old bedroom.
And in the messy closet, I find a small blue tub. The only tub in the entire closet actually, and one I had seen many times, but assumed contained nothing of value.

I open the tub and in it are 3 girly photo albums each marked with one word: “friends.”
As I flip open the first album, what do I come to find? One of my favorite photos of Kevin.
So I continue flipping, and more and more photos of Kevin emerge. At least a hundred through all three albums and photos of our friends, Meghan ValenciaJohn ReedKelsey Coggins and too many more to name. My best friends and his best friends all together in photo albums I assembled in my youth.

So when people ask how my uncle came to marry my best friend, Meghan. 
The answer is simple: They were both my best friends. And still are.❤️

Prepare for the worst, Hope for the best.

As my husband and I finish out my first cycle ttc (trying to conceive), I can’t help but think back on how much I’ve changed since my RA vengeance 9 years ago…wow, has it been that long already??

The year we were engaged (and the year I started this blog) had become my first year on biologic medication. I was on Enbrel and feeling fantastic! Up until that point I had been limping around on crutches and using a wheelchair. I was on medical leave from work and school, but when I started on Enbrel everything changed. All of a sudden I could walk and work again! So when it stopped working it’s magic a month before our wedding, I had high hopes the next drug would be a miracle too. More than high hopes, I was certain I would end up in remission again–like I experienced in my teens.

If I could go back and tell my younger self anything, it would be, “prepare for the worst, hope for the best.”

The truth is, I didn’t at all prepare for the worst. I was so certain everything would work out perfectly and the next drug would near cure me, I ended up acting out recklessly. Reckless with my finances and reckless with my emotions. Five years after it all went downhill, (and 6 treatments later) I’m still not 100% back to work. The only upside is that I learned my lesson.

Now, six years into marriage and one month into ttc, I can say I am more than preparing for the worst. And the worst that can happen in my mind is miscarriage….I know, I know, grim, Steph, real grim. But after all I’ve been through with less-than-great health, is it really all that surprising that my mind would go there?

Since hubs was the one who taught me that whole, “prepare for the worst, hope for the best,” bit, I approached him with my heeded warnings of dead babies and such. I was actually so proud of my little statistics research, that I went so far as to say, “So, if I get pregnant, you know, try not to get too excited–because you never know.”

To my surprise, he was appalled at me, and more than a little angry. He couldn’t believe I of all people- the easily excitable one, the hopeful and positive one- would say not to get excited on what should be the happiest and biggest step of our lives. He said I was ruining the process for us….and it took me a few hours to fully get what he meant.

Experiences, good and bad, have the ability to leave marks and change us forever. When I volunteered at a trauma-resolution camp for kids who had endured seriously devastating circumstances, I met a young girl who suffered a medical condition that had left her with PTSD. I know in my heart I was meant to meet C, because I too suffered from PTSD for many years that stemmed from childhood sexual abuse.

I’m proud to say after a lot of help, prayer, and therapy, I no longer have to deal with PTSD, but I still struggle to keep myself from feeling pain deep down in my heart. Especially from pain that hasn’t even happened to me–like losing a child! I’ve learned that there’s a very fine line between preparing for the worst, and being crippled by it. The worst things in life, sickness, disease, and death shouldn’t prevent me from getting excited about the best things this life has to offer. And even when there are no “best things” like babies and weddings–frozen yogurt is definitely something worth getting excited about. Through prayer and my usual “happy Stephanie” attitude (as my husband describes), hopefully I can keep PTSD at bay no matter what happens. In the meantime, let’s find something to get excited about!

What I want people to know about RA.

I’ll never forget the time someone asked me why I let my life revolve around my Rheumatoid Arthritis.

I almost laughed, because the truth is, I don’t.  In fact, I like to think that my RA revolves around me.. for the most part. So here I am, living life with RA following me around like a lost puppy:

Today, my thumb kills me every time I move it. For those of you who don’t know what that feels like, it feels like having to go through life with a workman’s clamp closed on your joint. At first, it’s not so bad, but after a few hours (or days), the joint is so swollen and red, it’s warm. Then it feels like I slammed a car door on my thumb. I notice it’s getting worse when I absentmindedly begin using my dominant hand less and less. But I do my best to continue my daily tasks, like stapling billing paperwork, for example. I consider going paperless to save my thumb…(Tonight I’ll search Amazon for an automatic stapler). As I drive to the Tag agency, my vision started to blur and my eyes grew heavy even though I woke up only 3 hours before. So I immediately detoured home to rest/replenish my “spoons” before continuing my day.

Two hours later, I set out again, driving coolly with my left hand at 12 o’clock on the wheel. I’m feeling confident again because today I put on makeup–which I usually only apply once or twice a week, but any day with makeup means no more “spoons” left for my hair. So I preplan to flat-iron my hair on Tuesday and put on makeup Wednesday. Thursday is a French-braided ‘do and by Friday, my hair will be dirty, but perfect for a slick-backed pony and light makeup again. High pain days means no hair & big sunglasses and I thank heaven beachy-messy waves are ‘in’ again.

I made seven stops total on my way to finish the errands and eagerly punch in every address (even though I know the way) to avoid Miami traffic and save my stiff hips from more abuse. I finally arrived back home after four hours and crash on the bed. Before my head hits the pillow, I text my husband, “I can’t cook tonight. Order in?” And the days go like this: If I was out all day, we order in. If I worked from home, I cook dinner.

So you see? How can self-care and careful “spoon” maintenance planning equate to my life revolving around RA? Just because I’m an advocate, just because I blog and I tweet does NOT mean I let my life revolve around my RA. I don’t let RA stop me, but we have agreed to slow down. The majority of the time, slowing down frustrates the heck out of me, but since slow is as fast as I can go, I will continue on–slow and steadily ahead.

Last chance for the RA with RA

As soon as I realized my love of scientific research ‪and my knack for statistics, I became eager to join a research lab on campus. I filled out two applications, got two interviews, and two offers! Then, I accepted a research assistant (R.A.) position in my dream lab! The Cognitive Neuroscience lab. 

At first I was nervous and wondered if my love of research would get satiated once I got a taste of what it was really like, but surprisingly, it didn’t! I’ve always been a dreamer and being in the lab- getting a tiny peak at what research was like up close- just amplified my dreams of answering my own research questions. And it encouraged me to pursue a minor and Master’s in biostatistics.

Then my dreams were shattered when just the other day the PhD student whose experiment I’m running ‬sought to fire me because of my RA (Rheumatoid Arthritis).

I’ve never been late to the lab in my life. I’ve attended nearly every weekly lab meeting, even after infusion appointments with out-of-town speeches/conferences being the one exception.

But just the other day, the day after my infusion, I became fatigued and accidentally overslept PAST my 12:00pm lab appointment. Since I got hired I’ve never once been late to the lab, even arriving on time at 8:45am after an hour of rush-hour traffic and a night of painsomnia. Oh, and I hardly ever sleep past noon—even on days I fall asleep at 7 or 8am. But for some reason, this day was different and I slept through my alarm and into the early hours of the afternoon. As soon as I awoke and realized the time, I immediately called my participant, apologized profusely, and promised to grant her credit for my mistake. My lab manager soon noticed my absence and (thankfully) being aware of my Arthritis, asked if I was feeling okay. I told her what had happened, apologized my heart out, and swore up-and-down it’d never happen again. Then, I threw on some clothes and raced over to run my next appointment. I thought it was over then. It wasn’t. My lab manager then approached me with the news that Ali (the PhD student) had instructed her to fire me for my first tardy. She then proceeded to apologize for disclosing to Ali that I had RA.

It had taken me months to feel comfortable enough to reveal my diagnosis and I had specifically asked for her to keep it to herself. But in this situation, she felt it necessary to do so to save my job and in fact told Ali, “It’s not like she didn’t want to be here. She wasn’t feeling well.” To which he replied, “Fine, but this is her last chance.”

Revealing my diagnosis had earned me a first and last chance to keep my job. All this time I had worried about losing my love of scientific research, I hadn’t even acknowledged the possibility of research not loving me.

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

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