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Why I like "Rheumatoid Arthritis" better than "Rheumatoid Disease

When people think of ‘Arthritis’, I like that they think of their grandmother, with mangled hands sitting in a wheelchair.  

When I tell someone, “I have Rheumatoid Arthritis,” I like that they are looking at my Young Face and simultaneously picturing their crippled grandmother.  
The word ‘Arthritis’ doesn’t need to be explained. They know what it is and how ugly it can be. What they don’t know is, to what extent.
There are over 100 types of Arthritis & 350 million people affected worldwide-not including those 350 million people’s family members. 
It’s possible the person I’m disclosing to knows someone with a type of Arthritis, but definitely no one as young as me. 
Then they ask the million dollar question: 
    “…But doesn’t Arthritis only hit at old age..?? 
    “Not Rheumatoid,” I respond, “Rheumatoid Arthritis is the worst of the Arthritides and it can hit at any age. I got it when I was 5.” At this point, their eyes usually widen, followed by a quick in-take of breath. The news shocks them. They know this disease is worse than grandma’s, because I got it so young. They also know my future. 
My future is their grandmother’s present. 
    Then they ask, “Isn’t there anything doctors can do? Medication?” 
    “Chemo”, I respond and methodically enunciate each syllable of my triple-therapy-combination, Methotrexate+Orencia+Plaquenil. 
    “Chemo for Arthritis. Now that’s a phrase that sticks with them. I don’t think the affect would be the same if it was, “Chemo for rheumatoid disease.” 
I like the word “Arthritis.” It suggests Deformity, Disfigurement, Ugliness. 
Which is exactly what Rheumatoid Arthritis is most commonly characterized by. 
It’s painful, it’s ugly, and it’s unforgiving. 
Then I hit them with the cold hard facts. As if mutilated joints wasn’t bad enough.       “For me, my RA has progressed to my stomach (that’s what my doctors say). Three years ago, I was diagnosed with Gastroparesis, which means my stomach doesn’t empty as fast a yours. I process food at 46% of that of a normal person. So I throw up a lot. At best, several times a week, at worst, several times a day.” This is when their face scrunches up, as if in pain. 
    “God, that’s horrible. I hate throwing up.” 
    “Me too,” I laugh. 
    “I’m lucky though,” I continue, “RA can progress to the heart and lungs, and even cause blindness. I get checked for that stuff all the time, but so far-so good! 
RA is like Lupus’ stupider, uglier, fatter cousin,” I giggle. I like my analogy to Lupus. People know Lupus too. This is typically when their eyes close and their head starts to shake, jaw clenched, as if to say, I don’t need to hear anymore, but they’re too polite to say so.
Then the most sought-after question follows. The one that is never absent during my RA disclosure. 
    “Gosh, how do u stay so positive?” 
Without skipping a beat I say, “I’m grateful for today. That today I’m doing OK because with RA, tomorrow is never promised.”
 I do believe people’s preconceived notions of what 
Rheumatoid Arthritis is or isn’t, is a problem.  
I can’t tell you how many times my college professors/administration have put me down, 
believing that because I “look” fine, that I am fine.

That being said, however, I definitely think it has more to do with 
spreading awareness and education, than just a simple name change. 
Awareness doesn’t have to be some big grand gesture or even a blog post.
It can be something you do at home. 
Sharing your story with the lady in the checkout line.
Changing your world.
One person at a time.

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.

Reconciliation Part 1

I’ve talked about my rocky relationship with my parents before. Especially when it concerns my Arthritis

I’ve written about the day I got my first cane and my dad’s harsh judgement. 
It’s been really hard, not having my parents’ support or understanding. 
It never made me angry with them. More sad, that they couldn’t be there for me. 
Well, last week my mom had major surgery. A hysterectomy to be exact. 
I knew before what a hysterectomy was, so when my mom called me to tell me she’d be going in for surgery in two days, I knew of the difficult recovery she’d have to face. 
So when she got released from the hospital after a couple days, I drove over to my parents’ house, prepared to take care of her. 
I know she wasn’t expecting it, but to be honest, I knew I’d do it even before she asked. 
Not because it was my job as her daughter– she hadn’t taken care of me when I needed it most. 
Not because she deserved it- because she defintely didn’t.
Not even because I wanted revenge or to make her feel guilty– show her what she could’ve, but didn’t do for me. 
I did it because it’s the right thing to do and I always knew if the roles were reversed- which they now were– I would take care of someone who needed help. 

I’m not a stranger to needing help. Not one bit.
I’m a disabled, sick girl with Rheumatoid Arthritis
There’s so many things I can’t do on my own. There’s so many things I need help with day in and day out. 
So when someone else needs help, when someone is sick. I know. I know the feeling
I know what it feels to be in pain. To not be able to do things you can normally do.
That’s why I did what I did. That’s why I chose to take care of my mother when she was in pain, unable to bend over, unable to take a shower or wash her hair, unable to cook or clean or drive to the pharmacy. 
I did it because I know how it feels and because I know how it feels, I knew I could help her.
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