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My RA’s behind the Wheel

People ask why at 27 I don’t drive long distances, the truth is that positions that keep me still for long periods (hands on a steering wheel, knees bent, foot extended) hurt me very much. I NEED to shift, move, turn, get up, etc. And that’s a daily thing. When I don’t do these things (or can’t because I’m behind the wheel) the pain of not doing them makes me desperate, and since I can’t take anything for pain—it also makes me reckless. Virtually every accident I’ve been in has been caused either because I was in too much pain and desperate to get home or too fatigued and falling asleep behind the wheel. I’ve had to pull over to take a nap more times than I can count. And that’s just from local traffic.

Today I remembered why driving long distances isn’t just risky, but impossible for me… at the present moment.

I was halfway packed ready to go to Orlando when I woke up barely able to pick up my son because my elbows were so stiff. Luckily, his crib is right next to my bed so I tossed him into my bed and laid down next to him. I rested with him for a long time. My RA keeping me in bed and my stubbornness mentally planning what outfits to pack for the weekend. In my mind, I’m thinking, “if the pain and stiffness in one elbow eases up a bit, I can still make the trip with one hand on the wheel.”

I don’t know where I’d be if I didn’t have people to tell me I’m insane. Probably dead in a ditch somewhere by now, because by tonight I couldn’t even carry my laptop and every sip of water I was thinking, “is this crucial to my survival..?” I even skipped dinner so I wouldn’t have to bring food up to my mouth.

Years ago, when my day job moved 40 miles away (1 hour+ in South Florida) I made the difficult decision to take the severance package out of fear I’d end up stranded somewhere and not able to drive myself home. If this had happened at the end of the weekend instead of the beginning, I’d be stuck until the flare up passed.

So if I cancel last minute, ask for a ride, refuse to RSVP, please forgive me. It’s not me driving, it’s my RA behind the wheel.

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!

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.

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