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The Rheumatoid Arthritis Mom preparation kit

The truth is I thought I had come to terms with being diagnosed with an incurable, progressively disfiguring disease a long time ago. I considered my RA and I off the Ferris Wheel of denial, anger, bargaining and sadness. I had moved on to acceptance!

In a wheelchair, out of a wheelchair.

With a cane, without a cane.

Working a job, and “disabled.”

I had learned to love myself and appreciate all the facets of ME with RA on the side. The good and the bad, my RA and me had a ying and yang. YAY!

Then I became a mother.

And a newfound hatred of this piece of crap disease began brewing inside me before I even had time to recognize it or nip it in the bud. Now, it’s bubbling to the surface in surprising tears I can’t hold back.

I was warned of the postpartum RA flare, told to prepare my support system, told to come up with a treatment plan with my doctor. And I did!

I did all of that, but the one thing I forgot to do was to prepare myself.

For the disconnection between my love and longing to hold my son and my stiff elbows and painful shoulders that won’t cooperate.

I forgot to forgive myself for not being a “perfect” mother and to ask my friends and family to remind me when I forget that there is no such thing…

I forgot to tell myself that people lie on Social Media.

That commercials that say “Moms don’t take sick days” are just Marketing to sell NyQuil, not truths.

And everyone has bad days, even moms without RA.

The truth is I’m still learning. I don’t have it all figured out. With every milestone I experience and every new obstacle I face, and every year that passes with this lifelong disease *eye roll..* I come closer to finding the reason I’ve been given this rather distasteful set of cards.

But like Rafiki from Lion King says…

I may have made my own adjustments… 😉

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.❤️

A Car Accident caused my RA Vengence

Yep, you read the above title right.

It’s something my family, my doctor, and I have known for a long time, but I’ve never talked about until now. Well, until a friend and fellow JRA’er Linsay asked me on Facebook. (hey!! 🙂 )

It was February of 2009, I was 17 years old and I was late to school. Usually, this would have meant that I had to call one of my friends to come get me or figure out some excuse to give to my teachers, but on this bright morning my dad was available and he volunteered to drive me. The more I think about it, the more I think that if I had been on time, it would have still been dark out at 6:00am during daylight savings. But it wasn’t dark out, it was bright and sunny in the sunshine state and as my dad drove down this deserted stretch of road he held his hand up to shield his eyes from the sun right as we were coming up on a stop sign.

My dad, with one hand acting as a visor and eyes squinted into the sun missed the stop and barreled into oncoming traffic. It happened so fast, there wasn’t time to scream or even brace myself. I’ll never forget the man whose car we hit bolting from the front seat, yelling at us for not stopping as he attempted to make a left turn. His car had spun out and hit another car, totaling both my dad’s truck and his sedan. He kept yelling curse words at my dad, who had gotten out to apologize. Then he stopped dead in his tracks as our eyes met. I don’t know what he saw in them, but something made him call an ambulance. When EMT’s arrived, my knees were pinned between the seat and the dash and I was crying, but it was my dad who got me out and as he pulled me from the cab of the truck, I screamed in pain.

I don’t remember what the doctors said at the hospital except that my knees weren’t broken, thank God, but that it would take a few months and physical therapy to get me back on my feet. They referred me to an orthopedic surgeon who told me my knees could take up to two years to heal completely and that I needed to give it time.

So I did. I took a leave of absence from my job and school and worked my way out of a wheelchair, but six months later, I still needed crutches to get around and now my shoulders were hurting. At this point, I still didn’t know that my childhood included Arthritis, so I kept going back to physical therapy, but never got back to how I was before. My orthopedic doc recommended special knee braces, which I wore constantly to help me walk without crutches and when I needed breaks, I pointed out my braces to my boss and to my professors and told them of my accident. Nine months later, I still wasn’t okay and now my ankles were hurting and my hands needed frequent breaks from writing. I had no clue what was wrong with me, so my boyfriend suggested I talk to my mom.

It was then that my mom told me that I had “a little” arthritis almost my entire life, but that the doctor had said that I grew out of it during my teens and that I was lucky. 

I didn’t think much of it, but when I told my boyfriend, he suggested we see this doctor together. After a lot of appointments and back and forth and him running virtually no tests on me, we got the answer.

My RA was back with a vengeance. Enlight2.jpg

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!

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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