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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.

“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

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!

The Support System – Loss & RA

Those closest to me know why I’ve been gone seemingly without a trace, but for the rest, I thought I’d let you all know. It’s taken me this long to settle back into “reality” knowing less than a month ago our family lost a bright and shining star. Joyce Aleite, my father-in-law (and second dad) suddenly became our guardian angel just 4 days after Thanksgiving.

There are still so many negative emotions, but the surreal-ness has dissipated for me leaving behind only urgency to hold my husband and our friends and family close. I met Joyce Aleite just after I turned 18 when Andres and I decided to reveal to everyone we were more than just friends (I needed to be legal first!😉) The first thing I noticed was that Andres is his dad’s clone. The second thing I noticed was his indecipherable Chilean accent. (I spoke virtually no Spanish when Andres & I began dating though I caught on quick to the Chilean slang. i.e “che” & “huevon, which actually means ‘friend’ and not an insult”). I soon also noticed that his love was unbounded—and not just for his kids (though they were the entirety of his life’s meaning) but every person he met. Waiters and waitresses who regularly go unnoticed, he asked their names and about their families. For me, he never let me get my own glass of water. I always had to jump up out of my seat quickly and snatch the glass up before he could reach it. When I didn’t know how to even fry an egg, he taught me how to cook. First pasta, then chicken, then steak (though I haven’t quite mastered the last one.) I made him an inedible lasagna once and he ate it gladly. He bought me my first walker, then my first wheelchair and never stopped paying for my medicines because he loved his son so. I was embarrassed when he told anyone who met me that I had a terrible disease, but I knew he did it so they would understand. He cared about shit like that, people understanding me and what I go through. I’ll never forget the day he personally delivered my medicine to our apartment when I was alone and after seeing how difficult it was for me to walk, he brought me a four-footed cane the very next day. I wanted to see him retire and grow old—though he would argue he did grow old. Selfishly, I wanted him to be around even functioning at 50% than die with dignity and nearly perfect health. I hate saying his name out loud now and I simultaneously want to bring him up in every conversation. I hate people who say he lived a full life even though he himself said it every day. I hate thinking of moving on without him being here to cheer us on, knowing his last words to us were “go, go, you guys can go. I’ll be fine.”

This post was a hell of a lot longer than I meant it to be. He was a Joy.

This is an article written for VectraVoice on published on our wedding anniversary last year. 🙂 Read the Team Approach to RA: Hate the RA but Love Each Other

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