Skip to content

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.❤️

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!

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.

Mental Health w/ RA

Maintaining my mental health (together with my physical health) is the main reason why I started this blog. I wanted someone to talk about how living with a chronic illness has affected their spiritual and emotional well-being. But in a society obsessed with the “overcomers,” how do we take care of our mental health without having to have it totally together all the time?

1. Don’t. 

As a young person living with RA, nothing annoys me more than seeing perfectly perfect people on the cover of health magazines. You know which ones I’m talking about, the ones with perfect in-shape bodies, perfect homes, and perfect spouses who provide for their every need while they get to focus solely on taking care of their health.

Now, I have nothing against those who seemingly have it all together, but you know what I really love?? The people with RA who don’t. Those folks who show their vulnerabilities and who express their pain, their disdain at having this disease, and their anger at their relatives for not understanding. My life doesn’t revolve around Arthritis, but it has left its little mark on virtually every area of my life. So I love and respect the people who show itand other realities about living with a chronic disease.

2. Entertain your emotions and they will go.

A mentor of mine once told me a story about living as a young girl in Africa. Often, many of her friends and relatives from the US would come visit her missionary parents while they were living in Tanzania. Well, apparently, she hatedbeing visited by company. So her mother would tell her, “All we have to do is entertain them for a little while, and then they will go.”

There is nothing healthier than entertaining your emotions and letting yoed940647fa425a2192de32a493b31492--ugly-faces-hilarious-memesurself feel what your body, mind, and soul desperately wants you to feel. There are many negative repercussions to holding negative emotions in–including increased pain, depression, sleeplessness, etc. The point is, as much as Kim Kardashian hates her crying face, at that moment when she was admitting she was unhappy in her marriage, crying and expressing herself was the healthiest thing she could have done.

One thing my mentor (a licensed clinical social worker) likes to say is this: “Don’t be afraid of crying. You won’t cry forever. Eventually, you’ll fall asleep then wake up feeling better.” Pretty sound advice, if you ask me.

3. Promise yourself to wake up with a new attitude tomorrow.

This is something I like to do. It helps me feel less guilty about having a “bad day,” and gives me something to look forward to. To me, it doesn’t matter how many tomorrows go by before I wake up with a new attitude. We all know is that it isn’t always as simple as “promising to wake up better”–sometimes the “tomorrow” is even worse than the day before! What matters to me is that I tried to have a better day and gave that new day a chance. 

Living in my teens with depression meant that I was always concerned about the past. Focusing on today and the hope for a better tomorrow gets me through life’s tough patches.

A poem I used to read went like this: RABlog2017

Today, is here and yesterday, is gone!
Now, it’s time, you have to move on!
There’s no looking back, what was
before, for it just isn’t there, anymore!
You have to look, to the future and it
will show you, the way. For it’s the
beginning, of a brand new day! Time,
is the best healer, as everybody knows.
And whatever happens, is the way the
wind blows! Don’t ever look back, to
what was before, for it’s gone and
forgotten and not here, anymore! For
whatever reason, it was meant to be.
You’ll come out unscathed and happy
to be free!

%d bloggers like this: