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
|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.
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 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!
|Hubby and I at our hotel, Disney’s Port Orleans Resort French Quarter|
—Based on true events—
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.