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It’s called "Conditioning"

I’ve conditioned myself to feel the most positive when I’m in the worst pain.
One day I just decided that when my pain is the worst, it’s my opportunity to dream
It’s a quiet time when I can dream about nothing else but the people I love and the things I love to do. I can dream of what my next adventure is going to be. Whether it’s traveling to Italy or redecorating our patio. 
I can plan what I’m going to do with my friends and family when I get better. I can pray in my heart for all the people affected by Chronic Illness and send them positive thoughts that say, “You will get better. One day.” Every time my bones feel like breaking I dream about all the beautiful things in the world and how I want to see them. I dream of these things and it helps me to keep my head held high. It’s called “conditioning”.
Tuscany Sunflower Fields

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! 

Labels and Reunions

I’ve had this 18 years and I still have a hard time saying the words sometimes…
I have Rheumatoid Arthritis”. Sometimes I don’t want to just because I wish it wasn’t true! It’s the words that bother me. 
The labels:  “I am sick”  “I can’t keep up with you”  “I am disabled”  “I am not normal”  “I am not well enough to do the things you do

It feels like these words are being tattooed onto my forehead as soon as I reveal what’s “wrong” with me. I’ve come to terms with having this disease and I’ve even come to terms with my fate. I’m still stuck on the labels.

I think most people get nervous when they’re going to a reunion. You worry that you’ve gained weight or that people won’t recognize you. You think about whether your life will be considered “successful” in the eyes of your peers. 


I mean, most of these people you haven’t seen in probably 10+ years and you’re worried if you’re on the same level as them in life. (..As if there were really ‘levels’..) It’s normal to feel that way! 

It can be really difficult because my normal is so different than people my age. I’m looking for treatments while they’re looking at houses. They’re experiencing morning sickness from pregnancy and I’m throwing up from chemo. It’s definitely not easy.
I’m not beyond this kind of thinking and comparing, but I need to be
I need to realize that just because I am disabled, it doesn’t mean I’m any less than my highschool friends!

I have an amazing husband who supports me in everything I do, I have friends who are always slowing down for me, I have all these readers who are fighting alongside me! Who cares what people think?! That sounds like Success to me!

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. 
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