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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

T.G.I.T: Thank God It’s Thanksgiving!

So tomorrow is Thanksgiving! 
But before you assume this is a #blessed #thankful I have Arthritis list 
because I’m an “RA Blogger,” please just stop right there. 
I mean, let’s be real here! Although I have accepted having to live my life with Arthritis and I’m grateful with how it’s shaped me… NO I will not be thankful for my Arthritis. Pssh!

Instead, I will do my own little version of 3 Thanksgiving RA hacks to get you through the holiday. 🙂
And before you think my hacks mundane, I will remind you unbelievers that it is important to learn from your mistakes.
……Particularly my mistakes that I’ve successfully made in just the last 24 hours of this                                                                                                                                       Thanksgiving…. 
1. Rest. Or better yet, take the day before Thanksgiving (today) off.
I’m so done with AMs…
So… Because I’m your standard overachiever, I went to sleep early last night (midnight) and set my alarm for this morning to 6:45am. It was the perfect time to be able to make myself breakfast and get in some much needed research for my upcoming speech before heading out at 9 to drop off my husband at work by 9:45am. Then I would come back home and finish allll my research and type up my outline by 12 to get ready and be out the door by 1 to get to class by 1:25. After class, I would go and “practice present” my speech till 6 and be right on time to pick up my dear husband at work at 7pm. We would then go home and have a nice low-key dinner in preparation for tomorrow’s high-key, fun-filled cook-a-thon.
Now, here’s where the plan went awry. By 5:45am I was awake and feeling some significant shoulder pain, but feeling completely self-satisfied that I woke up extra early. I proudly headed to the kitchen to make myself a nice breakfast which I quickly devoured. Now my gastroparesis got ahead of me and by 7 I had vomited at least 6 times. Still committed to bouncing back like the good overachiever I am I decided to rest for a little while and just read. Soon, my stomach ache turned into severe knee and shoulder pain with a severe headache to boot.     Ha! What was I thinking….?

2. Use those rubber-tipped tongs to get things out of reach. Or a husband or a friend or if all else fails, a light-weight miniature step stool. Anything, but nothing. 
See if you can spot the cookbook… -_-

This one actually happened last night, but I think it still counts. SO because I’m actually cooking for Thanksgiving, I needed my trusty cookbook. I normally keep it on the third shelf in my kitchen (because it just looks so decorative there! <–here’s the mistake

Well, right when I needed it most I was- of course- in the mood to cut corners so I bravely rose on my tippiest tip toes, lifted up my dominant right arm and carefully attempted to sneak it off the third shelf. Being 5’1” and more arrogant than agile, I scraped the bottom of the book with my finger tips when reaching just past the breaking point of my known-to-be-messed-up shoulder gave out on me just in time for my favorite cookbook to cartwheel off that retched third shelf and land a corner right on my head. Ouch. 
Now that I think about it…this probably contributed a little to my next morning headache and my late night-early morning shoulder pain which I eagerly treated with EXTRA heat.     ….Mistake??

3. Borrow some of your friends’ lightweight pots.
There’s my little stolen pot! Sorry mom! 😀
Now, for all of you cooking aficionados looking down your noses at me, hold your horses!
In my defense I do LOVE LOVE LOVE my treasured All-Clad pots and pans that my dear husband bought me 4 years ago at 60% off (deal of the century!). But this Thanksgiving, I’ve decided my precious All-Clad is not my friend. My trusty, even-temperatured, quick-heating, stainless steel pots would have to be left behind this Thanksgiving. Anticipating this problem in advance like I usually do (lies) I politely barged into my mom’s house a half mile away and rummaged her cabinets. There I found the perfect little light weight pot to test out my 1 and a half hour rice recipe. And so cute too! 
Ok so this wasn’t actually a mistake on my part. I had actually done something right for once! And right on time for my cook-a-thon tomorrow. 🙂
Now, If you’re questioning whether you should do this- or will- remember this:
 Thanksgiving food is easier to eat when you have your spoons. 😉
Not my turkey! Wish it was though…hehe

Happy Thanksgiving Everybody! 😀  

My Favorite Thing

For the finale of this First Annual #RABlog Week I’d love to share with you my 
Wildcard 2: Tell us what you really enjoy and how that helps with RA.
Well, that should be simple. Blogging, duh! 😉


I really can’t tell you how important blogging is to me. I love everything about it. 

So when I started this blog in 2011 on tumblr, I was very nervous. 
I really wanted my blog to be authentic. An honest reflection of my thoughts, whether they were likable or not. I wanted to never hold back and show what Rheumatoid Arthritis really looks like. Not like the bogus commercials on TV. 
But opening myself up was nerve-wracking! Especially to criticism, knowing that the whole entire world was reading my innermost thoughts!

So, cautiously, I wrote my first post.
       And then I figured out I only had like 10 readers, so I decided to let it flow! Ha Ha! 

For me, blogging isn’t about the amount readers or followers I have. As much as I love my readers and truly cherish the connections I’ve made through blogging.
I mostly do it for ME!
I was recently engaged when I started this blog and all I wanted to share my journey.
The magnificent ups and the treacherous downs in life with RA.

And not just my physical journey, but my emotional journey.
I don’t hide behind the curtain and share the pretty side to RA.
I share the bad times too of when I’m angrydisappointed, or in pain

But my absolute favorite part is sharing my victories. 
The good times, when I feel great! When I’m traveling, or gardening
But most importantly, when I accepted having Rheumatoid Arthritis. 
The truth is I believe having a Chronic Illness like Arthritis 
doesn’t just affect our bodies, it affects our souls as well. 
And I’d like others like me to know that it does get better. 🙂


#RAgingFatigue

The people who know me best know that I’m like a raging bull. 
Once I make a decision about something, there’s no going back. 
—-This is what my mom says. Hi, mom! 
So, when my Rheumatoid Arthritis came back with a vengeance at age 17, you can only imagine how that stubborn personality translated into a quest for a normal life despite RA. 😉

But this time, it wasn’t the same RA as my childhood. It was worse. Much worse.
This “newer-stronger” RA wasn’t something I could mentally overpower or even something that was responding treatment
No matter how hard I pushed myself, no matter how hard I tried, I just could not keep up with my classmates. I was studying Architecture and it was just impossible to wrap my fiercly swollen fingers around a pencil, let alone draw a floor plan for 7 hours.

And that wasn’t all. 

I had fatigue. Besides the swelling that makes closing my fist impossible, and the stiffness that won’t allow me to sit for more than an hour, and the excruciating pain, I. WAS. EXHAUSTED. 
It’s like having the flu, but worse. I once explained it to someone like this:

“It feels like gravity changed overnight and I feel so heavy and weak I can’t get up.”

And you wanna know what the crazy part is? Even after 19 years of having RA and 7 years of my “RA vengeance” (the more severe version of my RA), I still feel it. 
I still feel the fatigue. I still struggle to get out of bed, to put on make-up, to go to school (different major ;), to travel, etc. I still struggle to do everything.

BUT my stubborn personality won’t let me give up, and I just take 1-3 shots of espresso to get me through the day, and rest up a ton the next day. 
Because that makes me happy. 

Please excuse my yawns. 😉

Nail ARThritis

People don’t realize how hard it is for people like me to do normal  things. 
And that sometimes, we don’t have the option of paying someone to do the things that we can’t.

So yesterday I finally was able to take some time to myself (no laundry or homework or writing or housework, yay!) and what did I do? I pampered myself! Yes, for the first time in a while I got to paint my own nails.

And it felt SO good, not just on the outside….because you all know how good it feels to have your nails done 😉 ….but it felt good on the inside too. 

Most of the time, having Arthritis means giving up what you love. Hobbies, jobs, activities. For me, it’s meant giving up a career I loved, school, and whole lot of independence
But recently, I feel like I’ve gotten a lot of that back. 🙂 

I used to paint my nails every other week, but when I started to deteriorate, doing my nails even just once in a while, was a huge strain. I would be forced weigh the pros and cons each time. Knowing my hands would kill me and my back would be hunched for the rest of the day. I’d enjoy my nails and pay for it later with swollen joints and loads of painAnd some of the time, I’d be worth it. Just to feel human again.

But now, with my treatments working well and fresh from cortisone shots, I’m able to get through it without too many of the consequences. 😉 
It’s still painful and difficult for me to grip the nail polish bottle, but I don’t care. 
Even though my hands shake and I make a huge mess, to me, it’s about more than nail art.

It’s the accomplishment, the satisfaction of being able to do something I haven’t been able to do in a while. 
To be able to do something for myself, without somebody’s help.
To just listen to music and dream while my shaking hands attempt to not mess up. 😉



I would like to stop and thank my friends and family for always helping me do the things
that I can’t. You’ll never know how hard it is to ask for your help and how grateful
I am for your gracious attitude. You never let me feel less than and I thank you for that. 
BUT… it does feel good to be able to ask less often now! HaHa

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