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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! 

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!

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. 

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
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