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Patients Say Treatment Lacks Goals And Guidelines

Rheumatoid Arthritis Patients Say Treatment Lacks Goals And Guidelines

Wow, guys, this makes me so sad. This is why I started this blog. Not only to bring awareness to this disease but also to educate people with RA and give them hope. We need to speak up! We need to fight back! We need to get our confidence back and do something about this terrible illness! 
I know its hard because sometimes we feel judged, misunderstood and that no one understands, but things have changed. We have tools now. We have the Vectra DA test (http://www.vectra-da.com/patients/how-vectra-works.php) which puts a verifiable number to RA disease activity. We have newer treatments being introduced all the time. 

We can do this, guys! All we have to do is speak up!

Remission Shoes

So I bought these shoes and dubbed them my Remission Shoes.” 
Since I got married I’ve been struggling with the thought of my future. What is going to happen to me? When will my body say, “Enough is enough. I can’t take this anymore?” How many years do I have left of being able to walk normally 3 out of 7 days a week? 10? 15? 
I talked to my husband Andres and expressed to him these feelings. You know what he said? He said to me, “I will never give up. I will never back down. I will never accept you as sick and say ‘Well, this is the way things are.’ I don’t accept it now, or ever. I will keep trying till the day you are in remission.
With that I say, forget this disease! Forget planning for the grim future and assume that we are going to be like this forever. There is no cure, but there is a possibility of a remission! There is a possibility that 2014 will be the year there’s a breakthrough. I choose to believe in that possibility. I choose to stay positive. I choose to hope. 

Moon Face

What I look like on Prednisone. HAHA!
Moon face’ is a common side effect of a medication called Prednisone- a very effective corticosteroid anti-inflammitory drug commonly used by people with breathing disorders, arthritis, lupus, psoriasis, and allergic disorders. It is characterized by a swollen, round, often puffy-looking appearance in the cheeks of those who use it, resulting in the name.


Recently my doctor started me back on Prednisone. Half of me was thinking, “Oh great, here we go again and just in time for the holidays too…” but the truth is it does make me feel significantly better. I mean, I know in my head its worth feeling better, but the fact that I’ve looked like a chipmunk in the all the holiday pictures for the last 3 years does bother me a little. 
Often, people will ask me, “What happened to your face?” or “Did you know that your face is really swollen?” and I simply shrug and respond with “Yeahhh I’m aware, it’s the medication.” 
I mean, its hard! Especially when you know its going to be for an extended period of time. You feel self-conscious! It’s like all eyes are on you and you know that they know that something is off about your face, but they don’t know why. Although Arthritis can be classified as an invisible illness there definitely are times when it is very clearly visible and its easy to get depressed about it. 
You don’t feel like yourself and you just want to hide and not go to any of the Christmas dinners or New Year’s parties. I know I’ve felt like that a few times. 
I’ve felt ugly, and I didn’t want to go out or get my picture taken, but after hiding out alone in my room, I realized that that’s no way to live! I can’t waste Christmas time with my family just because I look a little funny. And if someone asks, I just explain it to them and make a joke about how I look like I have acorns stuffed in my cheeks or I ate one too many holiday-themed cookies

It’s ok to to be upset and I’m not saying you have to be happy about it, but sometimes we gotta learn to not take ourselves too seriously or let little things get in the way of us living our lives.
We just gotta say to ourselves, “This too shall pass and I am the cutest chipmunk in existence!” 🙂
That’s one thing that this illness has taught me over and over again…

“Don’t sweat the small stuff.”
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