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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. 🙂

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.

Take a Closer Look at Rheumatoid Arthritis with Vectra DA

This test is unbelievable! For so long, people with RA have had to somehow describe to their doctor everything that they’re feeling. This test has changed that for me. Now, my doctor can actually SEE how active my disease is and better understand what I’m going through. It has brought me so much confidence in our doctor-patient relationship as well as helped keep track of what’s working and what’s not. I’m so grateful for this test! It’s truly been a lifesaver!
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