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RA and Weight Gain

  I needed this so much today!
A month ago I decided that one of my New Year’s Resolutions would be walking around my block 4 times a week. 

My goal is to build muscle and if possible, lose some weight. I know most people would tell me that I need to have a more concrete goal, but because I have Arthritis, Polycystic Ovarian Syndrome and Gastroparesis, it’s really easy for me to gain weight and really difficult for me lose it. In PCOS, weight gain is practically inevitable. 
 So I’ve been trying my best to commit to my 4x a week walking goal and I’ve been doing it! Some weeks I can only do 3x a week because of flares or whatever, but other than that, I’ve really been working hard to stick to it. 
Well, that was until yesterday, when I stepped on the scale and saw that I was 3 pounds heavier! I was just so discouraged that after all that walking I could gain weight! 
Having RA and other Chronic Illnesses often means losing your “good looks” faster. With all the treatments I’ve been on and off, I don’t feel like “looks-wise” my 20s has been my peak- unlike other people my age. 
But when I saw this picture, I was reminded that I’m not like other people and 
I AM TRYING MY BEST. 
A little over a year ago, I couldn’t walk without a CANE.
SO, I figured out that I need to stop beating myself up & keep P E R S P E C T I V E.

I’m not using Rheumatoid Arthritis as an excuse for not exercising
because I don’t believe illness can be an excuse. 
It’s called a REASON  
It’s Reality. It’s my Reality
and keeping that in mind just makes me want to fight harder.

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

#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

RAConnection

There is something irrefutably amazing about being able to communicate across 
time zones and continents with fighters, survivors – exactly like me.
As you all probably know, right now, there are hundreds of articles expressing that Social Media (or the internet) is replacing our relationships. 

I’ll tell you this, as a 20-something-year-old disabled girl, I beg to differ.

Recently, I wrote a research paper for school discussing this very topic. Being that it was a formal paper, there were a lot of things I wasn’t able to say. 
If you’d let me, I’d like to say those things now:
Having Arthritis is scary.
Just walking into a doctor’s appointment is scary. 
“Is the doctor going to help me?” 
“Is he going to believe my pain is real?”
Being surrounded by patients 3-4x your age that are disfigured, crippled, wheelchair-bound, visibly in pain, thin, and who frankly -no offense- look like they’d be better off in heaven than suffering any longer… is saddening and traumatizing.
“Will I be wishing for death when I’m their age?”
“Will I even reach their age?” 
Again, Arthritis is scary

Even though I still wish I was the only girl in the world with RA, I’m eternally grateful for my #RASisters and my #RADudes.
For me, the Internet is all I have to communicate and connect with people like me and I wouldn’t trade that for anything! 
These men and women, young and old, EXTRA-ordinary people who fight an invisible pain 24 hours a day/7 days a week. Friends, who not only personally know every tear, every pain, every disappointment, but also have the heart to offer comfort and advice to someone else. Friends who are feel like they’ve been run over by a truck, but want to know how you’re doing. Friends who will find a remedy and immediately jump online to share it others.  

Friends, I can’t get over you. And yes, I thank the Internet for that. 
Thanks, for allowing me to make life-long relationships across space and time. 

Absolutely nothing can replace the feeling of relief brought on by a friend 
who reaches out at the exact moment you need it.

Meeting my Rheumy Friends for the first time. 🙂
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