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Pain-o Dreams

It was a beautiful day. Bright and sunny, with not a cloud in sight as only it could be in Florida, my home state. I sat on the green, diamond patterned metal bench admiring the beauty of all that was around me when I felt a slight squeeze in my left hand, bringing me back down to planet Earth.
“Wanna go on Space Mountain?” asked my husband, his face glistening with a slight sweat but thrilled nonetheless. 
“Sure! Let’s go.” I replied, as I flashed him a grin. 
We strolled to the entrance of a very familiar indoor roller coaster without a worry in the world. As we walked through rows of metal line-forming bars, the ground sloped and the lights dimmed. Andres and I giggled as we quickly passed moving images of suns and stars and planets. As the ground continued to incline, my pace slowed. Steeper and steeper the floor angled, we joked about how much further we would have to go. Steeper and steeper- OK now- too steep. The pain came and so did the sweat as I huffed with exertion. He soon disappeared behind a corner as he sifted through the line casually. I grabbed onto the metal bars just in time. My knees, they weren’t working and the pain was too much to handle. I tried so hard to keep going, to reach the summit. I felt as though the weight of the world were crushing my now-swollen joints.
Suddenly, I wasn’t in the darkened tunnel of the line, I was in my bedroom- awake now- but something was off. Why hadn’t the pain gone away? Why were my knees and ankles still hurting as though I had just climbed a steep hill? Oh yeah… I remember now. This is just another symptom of a very familiar condition. More familiar than the entrance to my husband’s favorite ride at a popular theme park. These thoughts and images of what really happened on our Disney World vacation flooded my mind. I never climbed that steep hill. The exertion wasn’t my own, it was my husband’s as he pushed me in my wheelchair through the rows of metal bars. The only two things in common of this dream and my reality is the pain that’s always there and the happiness we shared that week. 
I smiled as I closed my eyes, realizing that even though the pain will always be there, so will the joy and the laughter Andres and I share be. And that is worth everything in the world to me. 
Hubby and I at our hotel, Disney’s Port Orleans Resort French Quarter


—Based on true events—



5. Acceptance

If this isn’t crippled, then I don’t know what is…
The scariest part is realizing I’ve already accepted it. I’m not angry. I’m not sad. I’m not even embarrassed anymore.
           This is me. This is my ‘normal.’

My family and friends have accepted it as well. I don’t get the, “So today’s a bad day, huh?” comments anymore when they see me with my boat (aka: walker). They know. Everyday is a bad day. The pain is at a constant ‘9’ and the swelling means my favorite skinny jeans aren’t even an option anymore. People rarely make fun of me anymore. I guess this “invisible illness” is beginning to be visible. The only thing I had left was the ability to drive and now that’s basically gone too. 


I’m done trying to hide my boat or use it only when the pain gets unbearable. Why? Because its constantly unbearable and I’m exhausted
Exhausted of pushing myself beyond the point of no return just to keep this secret. This secret that I can do more than I really can. That I don’t need you to help me. I can’t carry my dirty clothes to the laundry room. I can’t change my own sheets or cut my own meat or style my own hair. I can barely stand up in the shower for more than 5 minutes! I can’t keep all this a secret any longer and I need be honest

So here I am, being honest:

There’s a lot of things I can’t do on my own. 
Your 65 year old grandmother can probably do more things than me, but that’s OK. 
I love being me and even though I am practically crippled, there is one thing I can still depend on being able to do…
I can still laugh and I can still have fun, no matter what happens to me. Even if I never find a treatment that works and I never gain my independence, I know I will always be able to smile and enjoy my life. 

2. Anger

I’m trying really hard to believe these words right now. I feel like I have so many dreams, so many hopes for the future and I’m just waiting to get better so my life can restart. 
Don’t get me wrong, I’m not sitting around doing nothing. I’m doing my best and I do believe my best is good enough.
 I just want to be able to do more. 

Lately I’ve been feeling impatient. Like God made a waste of me by giving me this. On the days I’m feeling really blue, I think to myself, “God, why!? Why did you do this to me?? I could’ve been so great! I could’ve been successful. I could’ve had my master’s degree by now. I was such a hard worker, smart even! Why did you make me this way to just waste all that ambition on a cripple?”
I didn’t realize how angry I was. I know the real answer in my head. He probably gave me this because he knew that otherwise, I would’ve never slowed down long enough to appreciate the little things. Or maybe he wanted to get my attention and knew that my path would never come here if he didn’t give me a nice big obstacle.

Honestly, I can deal with the fact that God gave me Rheumatoid Arthritis. What I’m having trouble with is why can’t I have one successful treatment? Please, God!! I’ve had 5 failed treatments and I’m not sure I can deal with one more. I want to move on with my life! I want to get over this chapter of looking for a treatment that works on me. I want to be able to say, “XYZ works for me and look at all the things I can do in spite of Arthritis.” 

I think sometimes you feel happy and you’re dealing with all these things and then it’s like a pin drops on top of you and you break down because it finally gets to be too much. You think to yourself, “I can handle this [enduring the constant pain], I can handle that [the nausea and other side effects].” But then you start loosing the ability to do something you love and it’s overwhelming. 

Having this for 18 years has been a roller coaster. I always say, it’s like going through the 5 stages of grief over and over again, but I have to keep hoping.
Believing that everything will be alright. 
Maybe not today but eventually.

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.”


Reflections on 2013, Resolutions for 2014

I think by the second or third week of January we all have our New Year’s resolutions set. However, before I tell you what mine are, I’d like to take the time to reflect on this past year. 

In 2013, I spent 2 weeks (including Christmas Day and New Years Day) in the hospital, 3 months on a doctor-ordered liquid diet, and the first 4 months of 2013 using a walker. It was really hard on my husband and I, and to be honest, for a minute there we didn’t know if I was going to make it or not. 

My 2013 New Year’s resolutions may sound simple to most people, but for me it felt like a raging river I was unsure I would ever be able to cross.
  1. Make it through the rest of 2013 without a visit to the hospital.
  2. Be well enough to eat normal food.
  3. Get better on Actmera.
  4. Make it to the annual Arthritis Walk in November.
  5. Reach out and re-analyze the company I keep.
  6. Start a blog, help others like me, and bring awareness to Arthritis.

Although it was a very difficult time, I’m proud to say I achieved all my goals and then some! We did have some bumps along the road. We were forced to move out of our apartment because my health, had to give our dog away, and dealt with two failed treatments. 
It was very disappointing and disheartening, and I cried a lot. But I must say there were some great memories and amazing achievements that I am so proud of. 
For one, we moved back in with Andres’ parents which ended up being a great decision as we now have a much better support system. Second, we gave our dog away to the most perfect couple on Earth-whom I believe really needed and wanted her- which resulted in us making two great friends. And lastly, I was able to switch to two new treatments with the guidance of an amazing doctor
As if that wasn’t enough, I also got the incredible opportunity to start a blog, publish an article in Women magazine, and bring awareness to RA by doing interviews on WSVN and RadioMD
All in all, it was a difficult, but good year. And I can’t wait to see what’s in store for me in 2014. 

So without further ado, here are my New Years Resolutions for 2014:
  1. Stay off of Prednisone for one year.
  2. Loose 10 pounds by eating healthy and exercising when possible.
  3. Go back to school.
  4. Have at least one successful treatment this year. 
  5. Be well enough to do the things I love and spend more time with the people I love.

I believe I can do it. I think its very important to have goals in your life. Even if it’s something simple. We have to remember to keep trying even through disappointment and heartbreak. We have to keep dreaming and keep looking forward even through big challenges! I may have Rheumatoid Arthritis, but I’m still dreaming and I always will be. ❤
So tell me, what are your Resolutions for 2014?
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