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How do you know when it’s time to switch RA meds?

How do you know when your RA is out of control? Where do you draw the line between what is “normal” for someone with a chronic, progressive inflammatory (read: painful) disease and what requires intervention? Is it personal tolerance to the current existing pain? Is it the emotions towards current existing pain? Is it the number of flare-ups in a week? A month? Or is it the amount of pain pills required to manage current lifestyle?

At what point am I kidding myself trying to live like a person without RA? At what point do I get fed up and call my doctor?

How much pain is ACCEPTABLE?

A couple months ago I did a Vectra test.* If you’re unaware, a Vectra measures RA disease activity using 12 biomarkers that are linked with inflammation and scores it between 1 and 100.

When I took Vectra, I knew I wasn’t doing well, but I didn’t actually expect my Vectra score to be that high. My pain had been increasingly unbearable with Tylenol, my ability to fall asleep and stay asleep had become hit-or-miss, and getting out of bed in the morning due to the morning stiffness was becoming slow again and very painful.

But even that wasn’t enough to shake me into calling my doctor and requesting some of the more serious drugs like methotrexate or prednisone. These symptoms joint pain, stiffness, swollen “frozen” joints, fatigue, etc. are ones I’d come to accept given my RA diagnosis. I know I have to live with some level of pain given I’ve had RA for 22 years now. Surprisingly, my ability to tolerate pain has increased over the years, even as my emotions towards my pain has waxed and waned. All these things, I don’t count on to tell me whether my RA is under control or not. And it wasn’t until yesterday, while answering interview questions, that I realized it’s a lot simpler to me than that.

“How do you know when your RA is not under control?”

When my pain affects my ability to take care of me. I’m not shooting for the stars here. Call me stubborn, but pain isn’t enough for me to say my RA is out of control. I know that having RA means bad days and I know it means giving up road trips and hours walking at the zoo. That’s what annual passes are for, so I can enjoy the zoo in short bursts and not get down on myself for not being able to do it all in one day. It is also why I choose not to trust my emotions and why I won’t change treatments just because I feel angry or frustrated at my pain.

I know my RA is out of control when I’m choosing leggings over pants with a button and a zipper. When I’m sitting down to brush my teeth because my knees hurt too much to stand in front of the sink for two minutes and when I haven’t brushed my hair in days because my fingers are too swollen to wrap around a brush handle.

Even then, my knee-jerk reaction is to assume I can deal with the symptoms, out of sheer willpower. It isn’t easy to switch biologics and every time it’s an emotional blow because I want the meds to work so badly, even when my body is clearly telling me, “NO.” It’s times like these I’m grateful to have a Vectra score not only to back me up, but to also kick me in the butt when I’m in denial about my fifth biologic.

As easy as it is to get frustrated with this disease and feel desperate for relief, the motivation to continue fighting against progression or stagnation is somehow equally difficult. I don’t have all the answers. I do believe the decision to change meds has to be a personal one, but I am grateful to have tools like Vectra to help me make that decision.

As for me, I’m pressing on for now, even with my high disease activity and even as I slowly deteriorate for the comfort of knowing I gave my fifth biologic a fighting chance against my immune system.

*Post contains affiliate links. Views are my own and not a reflection of Crescendo Bioscience, Inc. or it’s parent company, Myriad Genetics. This post is not an advertisement and reflects my personal journey and the benefit I’ve had from taking a Vectra test.

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.❤️

“It’s been Paid for”

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.

Today, as I was standing in the check-out line in the hospital cafeteria, the gentleman in front of me asks, “Do you want me to pay for your lunch?”
Politely I respond, “oh no, that’s alright. You don’t have to do that. I’ve got it.”
More adamantly this man then says, “Do you want free lunch, yes or no?”
I, taken-aback by his persistence, say while stumbling over my words, “but…why?..”
Then, with a huge smile, the man sighs and says, “Trust in God. He is good,” and walks away.

At this point, I’m thinking that this man is crazy, but very sweet and I open up my wallet to pay for my lunch. That’s when the cashier smiles at me and says, “It’s been paid for.”

Instantly I start crying over this small act of kindness. A $5 lunch may seem like nothing to most people, but in this moment when Kevin is upstairs in a hospital bed, all I can think about is God reaching out his mighty hand in this time of need. He sees Kevin and is watching out for him, Meghan, the boys, and the rest of our family.

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

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