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Woohoo!! I’m feeling better!

I’m so excited to finally share this news with all of you! At the beginning of this month, I got the results of my Vectra DA. If you look at the graph, you can clearly see that in January of 2013-when I was on Actemra-my score was at 51 (High), six months later it went down to a 34 (Moderate), and almost a year after that-while I’ve been on Orencia-it went down to a 30! My RA is now showing a score of 30, which is bordering the Low and Moderate scale disease activity and the lowest it’s EVER been! Woohoo!!! 😀
Click the Link to learn more about Vectra DA, and exactly how it’s helping thousands of RAers like me!

I’d love to go into scientific detail on exactly how this cool test works on just one vial of blood, but I think what’s more important is how it’s affected me and changed my life
Am I right? So here’s the crazy story… 
In 2009, I was seeing the same Rheumatologist I had been seeing nearly my whole life. I kept telling him that my joints were really bothering me and that it was interfering with my life. It got to the point that I even had to quit school for a short time because I couldn’t walk from one class to another. After a couple months of continued deterioration due to the pain, stiffness, swelling, fatigue, etc my husband, Andres, asked him if he would put me on one of those Biologics you see on TV (Enbrel). He said, “No,” because he felt [my] joints and couldn’t detect substantial swelling.” 
…Mind you, all he did was touch them with his hands…
He told me straight to my face that he believed all my symptoms were “not due to the Arthritis” and that it was “in my head.” He then continued to tell Andres and I that there was nothing that we could do and I would never be able to do things normal people could do or walk without pain again. I was in tears and Andres was just plain angryWe never saw him again after that. 
A week later we found my this amazing Rheumatologist and he told me he believed he could get my Arthritis under control and that same day he started me on Enbrel. It worked great for about a year, but my lovely antibodies decided it was time to to say bye-bye and it stopped working. The appointment right before our wedding, we all decided that when Andres and I came back from Hawaii, I’d be switched to Remicade. I had very high hopes, knowing many of my rheumy friends responded well to this drug, but unfortunately, it didn’t work for a second. 

Then, one day we were in the Infusion Room when Andres saw a pamphlet for this iPhone app called MyRA. We both thought it was kind of genius that someone had thought about making an app to track your symptoms. I had tried tracking my symptoms in the past using various little booklets and journals but really couldn’t get into the swing of it. It was just so hard to know where to start! Plus, I would feel so different from one day to the next that in order to get any reliable data I would have to write a novel of information 
everysingleday.  Not to mention, writing about all the pain, stiffness, swelling, nausea, etc I was feeling each and every day felt more like a chore instead of something I actually looked forward to. It got old quick. So when I downloaded this app and saw how easy it was to use and fun even with the little MyRA cartoon, my hubby, intrigued, looked up the company. He saw that the company, Crescendo Bioscience, had just recently developed this advanced blood test for people with Rheumatoid Arthritis. After reading about the test we immediately talked to my Rheumatologist about it, who thought it was a marvelous idea, and two weeks later we got the score showing High Disease Activity. The results felt so accurate to me, that I was in shock! 

I’m not recommending everyone with RA take this blood test just because it’s the latest technology and the first multi-biomarker blood test for RA. I’m recommending everyone take it because it truly helped me and changed my life. Rheumatoid Arthritis is largely an invisible illness, until its not. You can’t detect that damage is happening until it’s already happened. For me, because I haven’t experienced lots of joint damage, my doctor didn’t believe my symptoms were real! Getting the Vectra DA test done not only saved me a lot of time because I can see if the treatments are working or not, but it also gave me confidence in myself and in my doctor that we are on a path to better health

So now that I’m feeling way better and I have finally found a treatment that has been proven to work, I’m on to the adventures I’ve been planning for years now!
…..Maybe I should rename this blog to: The Adventures of Arthritis Girl.
Whaddaya think?? 

*This testimony is based on my personal experience. I am not a medical professional, but urge anyone interested in taking Vectra DA to seek the advice of their doctor.

It’s called "Conditioning"

I’ve conditioned myself to feel the most positive when I’m in the worst pain.
One day I just decided that when my pain is the worst, it’s my opportunity to dream
It’s a quiet time when I can dream about nothing else but the people I love and the things I love to do. I can dream of what my next adventure is going to be. Whether it’s traveling to Italy or redecorating our patio. 
I can plan what I’m going to do with my friends and family when I get better. I can pray in my heart for all the people affected by Chronic Illness and send them positive thoughts that say, “You will get better. One day.” Every time my bones feel like breaking I dream about all the beautiful things in the world and how I want to see them. I dream of these things and it helps me to keep my head held high. It’s called “conditioning”.
Tuscany Sunflower Fields

GROW: A Hobby I’m ABLE to Do

 I am definitely a hobbist! Ever since I was little, I’ve always been one to have several hobbies going at the same time. When I was 5, right before I got diagnosed with Juvenile Rheumatoid Arthritis I was really into gymnastics. Even at that age, I will never forget the disappointment that hit me when my Rheumatologist told me I’d have to quit. I remember protesting, “but I LOVE tumbling around doing cartwheels and round-offs!” 

How cute are these $1 kits from Target?

 That’s when he suggested I take piano lessons instead, knowing it would be good physical therapy and less pressure on my joints. My first day of lessons I learned how to play Mary had a little lamb, and I was SO proud! I kept learning and through the years I ended up taking voice lessons, clarinet lessons, violin lessons, art, drama, scrapbooking, you name it. Anything creative, I loved and by the time I got to high school I was doing as many hobbies and extracurriculars as my school schedule could handle. 
I did All-State Choir, I did Orchestra, I sang in Dinner Theatre, I even did a sculpture at Miami Beach Art Basel. Looking back now, it’s such an A-ha moment because I would’ve never found my love for the Arts if it hadn’t been for Arthritis

Baby booties I made last year
for my dear friend’s first grandchild
 Nowadays, my swollen hands make it impossible to do any of those things. Being disabled, I find it’s easy to get caught up in feelings of inadequacy, not to mention boredom. I mean, just think of the word! DISABLED It feels like it just labels me as “can’t-contribute-to-society.” 
It’s horrible! To me, that’s not living, that’s not thriving, that’s not anything. It’s just existing and what kind of life is that?  That’s why I find it so therapeutic to have a hobby to feel like I have goals and accomplishments! I just set a goal (i.e. I want to learn how to hem pants) and then practice and read and learn how to do it! (i.e. pants now hemmed by me!)
 Since having to sign up for disability, I’ve done crafting, crocheting, sewing, painting, and cooking. Not all my projects have come out amazing (or edible), but a few have come out pretty good. 🙂 Lately, however, with my hands getting worse, even these hobbies have become truly impossible. The joints in my hands just can’t do the movements necessary to do these things and when I try, they end up hugely swollen and painful for a week. 
Left: Tomato, Middle: Basil, Right: Another type of Tomato

But I can’t let that bring me down! I’ll just find a new hobby! Something that I am ABLE to do. So I’m going to try gardening. My in-laws are brilliant chefs and seeing as we spend so much money on herbs and veggies, I thought I’d try to save some money and have fun by planting my own! Hopefully the Florida heatwave doesn’t kill my plants, but if it does, what’s important is that I’m having fun learning something new. 

I’m not going to let being DIS-Abled prevent me from enjoying life. I’ll just find something that I am ABLE to do. Here’s to trying new things! 

Doctor Radio

This morning I got to talk to Dr. Jonathan Whiteson on Doctor Radio about what it’s like to be a young person with Rheumatoid Arthritis. It was so exciting and I feel so grateful to be given the opportunity to bring awareness to this disease. If it helps just one person feel better about what they’re going through, it was well worth it. 

We all go through difficult things in life, whether its disease, like me, financial troubles, or family stuff. Life is a journey with many ups and downs, and this my story.

Being a young person with Arthritis [or any invisible illness, really] can be hard. There’s a lot of judgement. People don’t expect to see a teenager walking with a cane or parking in a handicapped spot. There are a lot of stares. A lot of questions like, “What’s wrong with you?” or “What happened to you?” 

I have never encountered a person who I’ve told, “I have Rheumatoid Arthritis,” to that knew what I was talking about. The response is always, “how is that possible?” or “What’s that?” because they assume that only old people get Arthritis. 

I also look pretty healthy on the outside, so they assume that I can do things that I really can’t. 
It’s like this, if you see a grandma having trouble lifting a 5 lb bag of flour at the supermarket, you would automatically help her because you’re already aware that old people can’t do things young folks can. You’re not surprised when you she asks you to help her take out the trash because it’s too heavy. 
However, what people don’t realize is that there are hundreds of young people with Arthritis that have those same exact limitations! 
Another hard part about being young with Arthritis is the amount of time that goes by while we’re waiting for these treatments to work. That’s a big thing for a lot of us. 
For me, I’ve been through 5 failed treatments over the last 5 years. In the last 5 years, I’ve also had to drop-out of college, quit my job, and move in with my husband’s parents because I need help doing so many little things. 

At the same time that others my age are enjoying independence, I’m loosing mine and my 20s are slipping away. 

I’d love to just hit “pause” on my life till I find a treatment that works and I get better, but I can’t. 
A lot of people say, “Life is short” or “YOLO”, but I don’t. I believe Life is a long journey, and I have plenty of time to achieve my goals. The university isn’t going anywhere! It’ll still be there when I’m better and I can actually keep up with the other students. 
In the meantime, I’m not just laying around doing nothing! I’m doing something I’m extremely passionate about, and that’s helping others and raising awareness that Kids get Arthritis too!

*To hear more of my conversation with Dr. Jonathan Whiteson, listen online at Doctor Radio‘s the Rehab Show.
**Get more infomation on the Vectra DA diagnostic blood test I talked about on the show!
***Do you have RA? Connect with all of us at RAconnection.com

Normal is BORING

Today someone told me (multiples times…), “You have to think you’re going to get better to get better. Don’t be so negative. You have to stop talking about negative things. Positive things happen to positive people.” 

Most anyone who knows me knows that I am a very positive person. I pride myself in being positive. It wasn’t easy to get here. It was an honest-to-God uphill battle. It took a lot of practice, hard work, and patience. 
To me, being positive means accepting my pain and living life happy with who I am even though I have pain. I don’t try to be normal, because I’m not! I’m special and even though I’m not like everyone else I can be just as happy and fulfilled, if not more than those ‘normal people’! I choose to live my life knowing that God gave me this disease because he knew I could handle it and chose me specifically because He knew I would try my hardest to turn it into a positive. What’s so negative about that??

What I like to say is, “I’m not just LIVING with Arthritis, I’m THRIVING with it.”


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