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21 Things Only People Living with Chronic Health Problems Know

To the fighters, toughies, troopers, hooligans featured alongside me: 
Thank you for being so tenacious, resilient, hardy, persistent, 
enduring, relentless, and stubborn.
Thank you for never giving up. 

Thank you for being so damn unshakable.

Buzzfeed | Lliving with Chronic Health Problems

New Patient ✔

There is something so odd about going to my Rheumatologist, Dr. Weitz’s office and seeing all these people, patients, like me, at different stages in their journey with Arthritis. 

Last Thursday, as I was walking out of Dr. Weitz’s office I noticed that in the waiting room was this woman that I could easily identify as a New Patient. It was so odd to me, seeing her there. I could tell she had Arthritis and something about her made me want to reach out and touch her shoulder and tell her:
 “Everything’s going to be okay. I’m here for you.” 

And to think, maybe she’s experiencing these unusual symptoms for the first time. Maybe she doesn’t even know what’s wrong with her and here she is, sitting in a waiting room with all these “sick people” in wheelchairs and with walkers and canes. How terrifying we must all look to her. How scared the woman must be. I know I was. 

It felt as if I was having a flashback of when I was the New Patient, anxiously sitting in the waiting room -scared to death of what the future might hold. I had so many unanswered questions. Will I be able to walk again? Is this doctor going to help me? How bad is my RA? 

I had had a rheumatologist before, the same one who diagnosed me when I was 5 years old in 1996. But, to be honest, we weren’t getting along. I felt like he wasn’t treating me or at least trying to treat my disease. We disagreed a lot on how well my Arthritis could be controlled. He told me multiple times that I should just accept the fact that I was disabled now. But I wanted to fight back, try any and every treatment available. 
Well, finally, one day, my husband and this rheumatologist got into an argument about my prognosis. We told him we weren’t ready to just “accept it and move on.” I was too young for that! I was 19 and still had many more fighting years left in me. If the treatments didn’t work, fine. But I wasn’t going to give up WITHOUT EVEN TRYING! 

Me, at my first-ever infusion.
So, that’s how I ended up in Dr. Weitz’ waiting room -5 years earlier- sitting scared and confused just like the woman. If I could say anything to her and to other new patients, I’d say: 

We’re all just like you, waiting, hoping, praying, fighting. We’re here for the same reason. To fight this disease and aim for success in better health. We’re here because we’re fighters.



I’m TOO Fast, TOO Furious

So, Andres and I went to Coconut Grove Park to get in some exercise and go walking- without my cane– for the first time! I cannot even tell you how amazing it was to see all that I could do. I haven’t been able to walk without some sort of aid, wheelchair, walker, or – most commonly- my cane in YEARS
Walking without my cane for the first time! We had to capture the glorious moment. 🙂

My cane was like an extension of my arm and I would use it to open and close doors, get things off the top shelf, and even balance it in a way where I could lean my buttocks against it and get some pressure off my knees. (Yes, I was pretty creative about figuring out different ways to use it. lol)
There were pros and cons to having my cane. On the one hand, I could walk a lot easier, without so much pain and go further.  But on the other hand, I could only carry one thing at a time. Just feeding myself was a pain because not only was it extremely difficult to carry a heavy plate, but I couldn’t carry a plate of food and a glass of water at the same time as my right hand was being occupied by my cane. Same things goes for doing laundry, I only had my left hand to carry all these clothes so I’d have to make multiple trips and because walking was excruciating, by the time I made two trips to get the clothes to the washing machine, I’d be down for the count.

 Look at me working out my legs! Haha!  

I can only tell you that the first week –at least– without my cane, I felt so outside myself. Like I could carry so many things at once. “So this is how normal people feel,” I thought to myself. Walking to and from places still feels so fast. It’s like when you say, “Pause the movie real quick. Let me get us some popcorn, I’ll be right back,” before, depending on many variables- like the weight of the bowl, the accessibility, my pain level, the swelling in my hands to open the package, etc- it would take me at least 10 minutes to come back. By then, I’ve forgotten what the movie is even about.  Now when I say, “Pause it, let me get us some popcorn really quick,” it’s LITERALLY quick and I’m back in three minutes tops. Ha!

It’s unbelievable! Andres is always singing the theme song from Fast and the Furious, because that’s exactly how I feel now. Too Fast…Too Furious.. Too Fast…Too Furious…”
Andres and his dad, Joyce. Don’t they look like twins?
It still feels so surreal sometimes, as if I am not myself
I can only give a million thanks to my friends and my family for helping me and supporting me through thick and thin.
I have no words to express my intense gratitude to all the wonderful people who dedicate their lives to help people they’ve never met, in order to give them a better quality of life. It’s a wonderful thing!  

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.
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