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Walk to Cure Arthritis | 5K Walk Event | The Young Face of Arthritis #TeamACHE

It still astounds me when someone tells me they didn’t know that young adults and even kids could get Arthritis.

As most of you know by now, I was diagnosed with Juvenile Rheumatoid Arthritis in 1996 when I was just 5 years old. Now, I’m 26 years old, in college, married to the love of my life, and currently disabled because of my RA. Still, I’m determined not to let my disease stop me from achieving my dreams and hopes for the future. It may sound silly, but my biggest goal for a long time has been to get healthy enough to get a job! Some days I can do things almost like a normal person, but consistency is a really big obstacle for me. In 2012, I got laid off (from a job I loved! Management at Restoration Hardware) right after Enbrel stopped working for me. Since then, I’ve really struggled to find a treatment that works consistently well, has manageable side effects, and works for any length of time whatsoever. I’ve also been diagnosed with a few more diseases and syndromes while looking for my “miracle drug” including (but not limited to.. lol) Gastroparesis, Polycystic Ovarian Syndrome, chronic pain syndrome, and Cushing’s Syndrome. The last one is the most recent, actually being diagnosed last Monday…more on that later. *eye roll*

Although most people long for retirement, for me, working is something I miss dearly. I always say, mind is perfect, but my body can’t keep up and that is insanely frustrating. A CURE could help me accomplish this dream to be healthy, stable, and employed! ūüôā

Arthritis is the #1 cause for DISABILITY in America today and contributes to approximately $80 billion in medical expenses and $47 billion in lost wages. The total cost to society in the United States is around 1.2% of the 2003 U.S. GDP. Donating today not only helps those of us suffering with Arthritis, but society as a whole. Millions of Americans trapped in their malfunctioning bodies could be contributing in cutting-edge fields such as mathematics, healthcare, science, technology, and business–if only we had better treatments or a CURE!
The money raised in this walk will be donated solely to research. PLEASE consider helping young folks like me hope for a cure!

*I joined the Arthritis Foundation’s Walk to Cure Arthritis to help the more than 50 million Americans and 300,000 children with arthritis live better today and to keep the Arthritis Foundation’s promise of finding a cure for tomorrow. Your support provides people with arthritis life changing resources and information to manage their disease and improves access to the critical medications they need to live full, healthy lives. The impact of your donation doesn’t stop today, it also helps fund cutting-edge research to identify better treatments and a cure. Written by the Arthritis Foundation


Reconciliation Part 3 Finale

I wasn’t expecting my mom to change.¬†
So when she did change, it both surprised me and shook me to my core. 

Recovering from her hysterectomy meant she was in a lot of pain. She couldn’t clean or cook. She couldn’t bend over. She couldn’t wash her own hair or even drive for two weeks.¬†
It’s actually pretty similar to what I have had to deal with on a daily basis…

I wasn’t expecting a thank you, let alone an apology.¬†
But she did. In the most personal way. 
She apologized to me for leaving me alone on a day I needed her most. 

¬† ¬†One day, I began experiencing¬†racing heartbeat (a reaction to one of my medications). My husband was at work and although he did ask his bosses if he could come home to take me to the hospital, they wouldn’t let him. So hesitantly, I asked my mom if she would come over to our apartment and stay with me until Andres could come home and take me to the hospital.

Unfortunately for me, it was the same day as my cousin’s wedding and my parents had already RSVP’d…. That killed me inside, so when my mom apologized for not being there for me that day, I practically broke down.¬†

She told me that after this surgery she feels she can relate to me more….
That feeling incapacitated for two weeks made her frustrated. That the pain was exhausting and everytime she tried doing anything, she felt drained and suffered the consequences later.¬†That she hated being so dependent on other people because she couldn’t do anything. That she couldn’t sleep from the pain, which just made her more exhausted. “It wasn’t until I felt the pain¬†and¬†the exhaustion that I realized that this is how you feel all the time.”

Just that little bit of understanding, meant the world to me.. That little bit of validation took years of frustration and resentment off my shoulders. 

And just like my mother’s wounds, our relationship healed.¬†It’s not perfect, but I believe that now,¬†it’s better than ever.¬†

The whole point of me writing this is as much for myself, as it is to other RAers out there. 
To remind ourselves not to let¬†Arthritis¬†take away our faith or our trust in people. I’ve experienced a lot of hurt because of this disease…and not all of it¬†physical.¬†
It hurts when you meet people who don’t believe in this illness that they can’t see.¬†
Or the people that may make fun of my cane. 
Even the people who seemingly don’t give a crap.¬†
But I still choose to have faith that through awareness people can understand and accept this Invisible Illness.

Celebrating the victories BIG and small

What do you like to do to celebrate yourself and your victories? 

I think it’s so important to celebrate the victories B I G and small. 
It makes me feel good about myself. Good about my place in this world. 
It makes me feel like I‚Äôve conquered something I couldn’t do before.¬†

It’s easy to get caught up in the disappointments of having a Chronic Illness.¬†Especially when you have a family and responsibilities. On days where I’m feeling less pain than normal, I find myself catching up on chores I wasn’t able to do the day before.¬†
I often spend the “good days” folding laundry, changing the bedding, cleaning the bathroom, grocery shopping, etc.¬†

“Bad days” aren’t spend relaxing in bed and watching TV as most people would think. They’re spent covered in Ice Packs from head to toe, laying as still as possible as not to aggrevate the joints that are frozen in place. Attempting to sleep, exhausted from the agony my body is experiencing, but unable to get a wink in. Holding my pee till I can work up the nerve to hobble to the bathroom. Making that trip worth the physical¬†exertion by combining my need to empty my bladder, brush my teeth and my hair, put in contacts, shower, ¬†and change into a new set of pjs (ones I can put on by myself) into one trip down the hall to the bathroom.¬†

Spectacular sunrise over Miami Beach. Photo © William Wetmore:

But as a wise person once told me, sometimes it’s important to “just sit back and enjoy the good days. Instead of spending my good day doing chores, even if it’s for just a moment, take the time to celebrate it.¬†
I like to¬†reward myself and my ability to keep moving forward with a¬†chocolate treat or a small gift like a book I‚Äôve been wanting. Sometimes just an experience, an experience not clouded by pain, like laying in the grass, watching the sunset, thinking to myself, ‚ÄúI did it.‚Ä̬†

There‚Äôs something so satisfying about dressing up on a day that I feel good. Most days I don’t have a choice but to dress in pajamas. On “Ok” days I take it up a notch by wearing an actual bra and a tee. So when I‚Äôm feeling good it‚Äôs important to me that I style my hair, put on make-up, and a nice outfit‚Ķeven if it does take me three hours… ūüėȬ†

It’s easy to get caught up in everyday life, especially when you feel like you’re always playing catch up. But for just a minute, an hour, a day, taking the time to paint my nails, watch the Sunset, or take a long, relaxing shower makes me feel not just like the girl with Arthritis, it makes me feel like a woman, a human being- just like everyone else- again.¬†

And for the “great days,” there’s always skydiving! ūüėÄ

I’m TOO Fast, TOO Furious

So, Andres and I went to Coconut Grove Park to get in some exercise and go walking- without my cane– for the first time!¬†I cannot even tell you how amazing it was to see all that I could do. I haven’t been able to walk without some sort of aid, wheelchair, walker, or – most commonly- my cane in YEARS.¬†
Walking without my cane for the first time! We¬†had¬†to capture the glorious moment. ūüôā

My cane was like an extension of my arm and I would use it to open and close doors, get things off the top shelf, and even balance it in a way where I could lean my buttocks against it and get some pressure off my knees. (Yes, I was pretty creative about figuring out different ways to use it. lol)
There were pros and cons to having my cane. On the one hand, I could walk a lot easier, without so much pain and go further. ¬†But on the other hand, I could only carry one thing at a time. Just feeding myself was a pain because not only was it extremely difficult to carry a heavy plate, but I couldn’t carry a plate of food and a glass of water at the same time as my right hand was being occupied by my cane. Same things goes for doing laundry, I only had my left hand to carry all these clothes so I’d have to make multiple trips and because walking was¬†excruciating, by the time I made two trips to get the clothes to the washing machine, I’d be down for the count.

 Look at me working out my legs! Haha!  

I can only tell you that the first week –at least– without my cane, I felt so outside myself. Like I could carry so many things at once. “So this is how normal people feel,” I thought to myself. Walking to and from places still feels so fast. It’s like when you say, “Pause the movie real quick. Let me get us some popcorn, I’ll be right back,” before, depending on many variables- like the weight of the bowl, the¬†accessibility, my pain level, the swelling in my hands to open the package, etc- it would take me at least¬†10 minutes to come back. By then, I’ve forgotten what the movie is even about.¬†¬†Now when I say, “Pause it, let me get us some popcorn really quick,” it’s¬†LITERALLY¬†quick and I’m back in three minutes tops. Ha!

It’s unbelievable! Andres is always singing the theme song from Fast and the Furious, because that’s exactly how I feel now. Too Fast…Too Furious.. Too Fast…Too Furious…”
Andres and his dad, Joyce. Don’t they look like twins?
It still feels so surreal sometimes, as if I am not myself. 
I can only give a million thanks to my friends and my family for helping me and supporting me through thick and thin.
I have no words to express my intense gratitude to all the wonderful people who dedicate their lives to help people they’ve never met, in order to give them a better quality of life. It’s a wonderful thing! ¬†
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