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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.

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

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!

My Christmas Miracle

“So do not worry, saying, ‘What shall we eat?’ or 
‘What shall we drink?’ or ‘What shall we wear?’
…your heavenly Father knows that you need them. 
But seek first his kingdom and his righteousness, 
and all these things will be given to you as well.”  –Matthew 6:31-33

For me, it’s so easy to read these words and believe it, but so hard to really live it. 
Anyone who knows me knows I’ve been really struggling these past couple years with getting my medication, Orencia
After all I’ve been through, 19 years of RA, 5 failed treatments, being forced to quit my job, quit school, and having to apply for disability, constantly fighting…
I finally got my “miracle drug“. 
I had heard for so long from friends and other patients how much their “miracle drug” was helping them. Women who had previously been unable to carry their grandchildren were now gardening and sewing. My favorite “miracle drug” story came from a woman named Maria who had been practically homebound was now traveling the WORLD on Remicade
She travels to Costa Rica, Japan, London, Canada, and comes home just to get her infusion. Their stories have inspired me to keep going, keep trying, keep fighting… Even after 5 failed treatments, I was still determined to try anything and everything, until all my options were exhausted.
I would tell myself, “I’m lucky that RA is a disease people are interested in researching. There are new drugs coming out every day! Even if this next one doesn’t work, I still have a chance of finding something that will.”
So, the second that Orencia started working for me, I was elated. For so many years up to that point I had endured the pain, the stiffness, the swelling, with absolutely no relief. I finally knew the name of my “miracle drug”. O R E N C I A. 
                                                                        I guess the commercials weren’t lying
After 6 months on the treatment, I suddenly was able to walk. Without a wheelchair, without a walker, without a cane. It was like being thrown into a new world! I was surprised of all I could do and was so grateful that I had been blessed with a medication that gave me a new lease on life!
  
I even testified to the INCREDIBLE results Orencia had on my body in Woohoo!! I’m feeling better!, I’m TOO Fast, TOO Furious, and Getting Back on Track with Vectra DA. 
…Then, when I got a strange $500 bill in the mail from the pharmacy, Accredo, I wrote about that struggle in Exposing my Truth

The reality of Arthritis hit me like a ton of bricks. Paying for this “miracle drug” and maintaining it. Every 3 1/2 weeks the medication would wear off, my RA would start waking up, the antibodies in my blood attacking my joints. It was obvious that I had to stick with the 28 day deadline in order to get the full effect of my miracle drug. 
But when the price tag started inflating, it became harder and harder to keep up.
    Especially months where the infusions overlapped, making the bill over $300 that month.
Over the next few months I fought and fought over the price they had originally promised me -$70 per infusion- and even filling an appeal. 
After an obscene amount of phone calls to numerous co-pay assistance foundations, my insurance, and the pharmacy, Accredo, my patience started wearing thin. I started asking around, anyone and everyone I met for direction/advice. 
I got some great tips that really helped me, especially from my friend, Betsey. 
She’s a total genius. 
And I started making headway with the representatives on the other line. They started escalating my issue and I was constantly calling back, spending entire afternoons on the phone every week! 
Then, 10 days ago, they called me
They wouldn’t be able to ship my Orencia, my “miracle drug”, without a payment of over $300. 
I knew I didn’t have it.
Call me naive, but honestly, in my heart of hearts, I thought they’d let it slide… because it was Christmas.
I had been 2 months off the medication because of the $$ and due to 3 infections. My joints were on F I R E.
This was during finals and I was barely making it. I was struggling just to drive.
SO, I did what I thought Andres would do, I told them to charge it to my card and we would just figure it out some way. Do some odd jobs, whatever. Anything to pay for this one time, this last time. My last infusion. 
Tears immediately started pouring out of me. I was just so frustrated and honestly, pissed off. At that point, I had been on the phone for 55 minutes being asked to “please hold for a little longer” to only be told they needed this kind of money, today
So I let them hear it. I told them my entire story. Everything. From beginning to end. The diagnosis 19 years ago. The failed treatments. Quitting my life. The cane. The walker. The wheelchair. The rapid deterioration. The gastroparesis. The “miracle drug”. My slow improvement. My schooling. My blog. My speeches.
Everything.
I ended with, “Look at everything I can do now! How can you take that away from me!”
It was more of a shout than a question. 
“You can try calling co-pay assistance foundations,” they responded.
I bellowed, “I’ve told you guys this a thousand times!! I’ve called each and every one every other month for the past two years!” 
                        …before whispering, “No one will let me in. There’s no room.” 
I was resigned. Gasping for air. Straight bawling. There was no hiding my disappointment. 
                        It was then, that I strayed from my usual post of believing God had a purpose in giving me this disease. I -for the first time in my life- half-choked, half-screamed at God, “Why did you give me Rheumatoid Arthritis!?”
I was done. I wanted absolutely nothing to do with God. And I told him that too!
Over the next few days I did absolutely nothing. I was still pretty angry. I had tried absolutely everything in my power to help myself. I put in the legwork and it didn’t pay off. Even with my appointment day looming, I didn’t have the heart to call and cancel -to admit defeat. It was then I got a phone call. 
It was Accredo, the pharmacy -and most likely the representative I had verbally abused. I wanted nothing to do with them. I didn’t answer. “Forget them,” I thought.
Then, a few hours later, they called again. I finally answered. The representative asked me a bunch of irrelevant questions. Did I want to be enrolled in Patient Care Program? Did I want to speak to a pharmacist? Blah blah blah. 
I immediately asked if it was free. 
He said yes.
So I just agreed and asked if that was all, less than politely implying I wanted to end the call. 
He said, “Yes. Ok you should be getting your card in the mail shortly.” 
Irritatedly I said, “What card?” 
He responded, “Your co-pay assistance card.” 
“……..b-but…” I suddenly developed a stammer. 
                                        I guess God had traded in my RA for a speech impediment.
“I-I-I don’t under-er-stand”.
Patiently he replied, “You have been enrolled in a co-pay assistance program giving you up to $10,000 a year to help pay for your Orencia.”
“No!” I cried, “Are you kidding me?!” 
He laughed. 
I laughed too. 
Then, I cried. I told him I felt like I won the lotto. I cried more. I couldn’t believe it. Me? I’m nobody. I’m no one special. I told him everything I had been through. That this was my “miracle drug” and how Orencia had given me back the ability to walk. I thanked him 100 times, but somehow it didn’t seem like enough. 
Then he said, “This. Right here, is why I do this. Just to be able to help one person, like you.” 
We ended the call and I fell onto my swollen knees. I didn’t care how much it hurt. God would protect me. He had protected me. He did this. He influenced someone at Accredo to help me. Because He thinks I’m special. He loves me. And He wants me to rely on Him.
After all, He sent His son into this world. A human, a baby, who like me, there had been no room for. His son lived a perfect life (unlike me) only to die so that I could know Him.
“Hold fast to him and take your oaths in his name. 
He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.”  -Deuteronomy 6:31-33
“You will have plenty to eat, until you are full, and you will praise 
the name of the Lord your God, who has worked wonders for you.” -Joel 2:26

Exposing my Truth

So, I guess it’s time to be honest about why I haven’t been writing as much. 
Don’t get me wrong, I am writing. Journaling on my own, like I always have. 
I’ve also been writing articles for different websites as well as essays for school. 

But that’s not why I haven’t been writing here, sharing with you all what’s going on with my life like I normally do. I pride myself in being transparent with my description of life with Arthritis. 
I don’t hide the nitty-grittyThe jaw-clenching physical pain, as well as the psychic pain I experience on a daily basis. 
It’s much easier to do this in writing than it is in person. Overwhelmed by my desire to not let my symptoms overshadow my conversations with loved ones. I smile though my mind is on my knees because I’m genuinely happy to see them. I choose to be in the moment. The result is often me stumbling later from exceeding my boundaries in the hope to “help” wash the dishes. Very few recognize this meager out pour of sacrificial love. It’s all I have to give.

…I think I’ve been delaying exposing the truth by going underground…

I’m struggling with getting my treatments. 
They are never on time and the costs are sky-rocketing. 
I don’t know if I can keep going this way.
My studies are suffering due to the obscene amount of calls I make daily to the insurance company, the pharmacy, the doctor, various foundations…
Unfortunately I’m not becoming an expert, I’m simply getting sidelined by the lack of valuable information available. 
Every truth is contradicted by another agent, another supervisor, another “expert”.

My pocketbook is empty, both by the amount of “minutes” I spend on these calls, as well as the costs of treatment.
It all came to a head yesterday when I received a payment notice of almost $500 for a medication I was previously told was $70. I was ordered to pay within 10 days, as if that were possible. The process of filing an appeal is 60 days.
This is just one on top of the other medical bills that have come through the mail. The amounts owed quickly climbing to $2,000.

If I could just get this, my most important treatment administered on time and at a reasonable price, I’d be relieved. This is the medication that has given me back my ability to walk. This is the medication that I’ve spent five years searching for. Five other treatments failed before trying this one.
 This is the only one that works.
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