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A Car Accident caused my RA Vengence

Yep, you read the above title right.

It’s something my family, my doctor, and I have known for a long time, but I’ve never talked about until now. Well, until a friend and fellow JRA’er Linsay asked me on Facebook. (hey!! 🙂 )

It was February of 2009, I was 17 years old and I was late to school. Usually, this would have meant that I had to call one of my friends to come get me or figure out some excuse to give to my teachers, but on this bright morning my dad was available and he volunteered to drive me. The more I think about it, the more I think that if I had been on time, it would have still been dark out at 6:00am during daylight savings. But it wasn’t dark out, it was bright and sunny in the sunshine state and as my dad drove down this deserted stretch of road he held his hand up to shield his eyes from the sun right as we were coming up on a stop sign.

My dad, with one hand acting as a visor and eyes squinted into the sun missed the stop and barreled into oncoming traffic. It happened so fast, there wasn’t time to scream or even brace myself. I’ll never forget the man whose car we hit bolting from the front seat, yelling at us for not stopping as he attempted to make a left turn. His car had spun out and hit another car, totaling both my dad’s truck and his sedan. He kept yelling curse words at my dad, who had gotten out to apologize. Then he stopped dead in his tracks as our eyes met. I don’t know what he saw in them, but something made him call an ambulance. When EMT’s arrived, my knees were pinned between the seat and the dash and I was crying, but it was my dad who got me out and as he pulled me from the cab of the truck, I screamed in pain.

I don’t remember what the doctors said at the hospital except that my knees weren’t broken, thank God, but that it would take a few months and physical therapy to get me back on my feet. They referred me to an orthopedic surgeon who told me my knees could take up to two years to heal completely and that I needed to give it time.

So I did. I took a leave of absence from my job and school and worked my way out of a wheelchair, but six months later, I still needed crutches to get around and now my shoulders were hurting. At this point, I still didn’t know that my childhood included Arthritis, so I kept going back to physical therapy, but never got back to how I was before. My orthopedic doc recommended special knee braces, which I wore constantly to help me walk without crutches and when I needed breaks, I pointed out my braces to my boss and to my professors and told them of my accident. Nine months later, I still wasn’t okay and now my ankles were hurting and my hands needed frequent breaks from writing. I had no clue what was wrong with me, so my boyfriend suggested I talk to my mom.

It was then that my mom told me that I had “a little” arthritis almost my entire life, but that the doctor had said that I grew out of it during my teens and that I was lucky. 

I didn’t think much of it, but when I told my boyfriend, he suggested we see this doctor together. After a lot of appointments and back and forth and him running virtually no tests on me, we got the answer.

My RA was back with a vengeance. Enlight2.jpg

What I want people to know about RA.

I’ll never forget the time someone asked me why I let my life revolve around my Rheumatoid Arthritis.

I almost laughed, because the truth is, I don’t.  In fact, I like to think that my RA revolves around me.. for the most part. So here I am, living life with RA following me around like a lost puppy:

Today, my thumb kills me every time I move it. For those of you who don’t know what that feels like, it feels like having to go through life with a workman’s clamp closed on your joint. At first, it’s not so bad, but after a few hours (or days), the joint is so swollen and red, it’s warm. Then it feels like I slammed a car door on my thumb. I notice it’s getting worse when I absentmindedly begin using my dominant hand less and less. But I do my best to continue my daily tasks, like stapling billing paperwork, for example. I consider going paperless to save my thumb…(Tonight I’ll search Amazon for an automatic stapler). As I drive to the Tag agency, my vision started to blur and my eyes grew heavy even though I woke up only 3 hours before. So I immediately detoured home to rest/replenish my “spoons” before continuing my day.

Two hours later, I set out again, driving coolly with my left hand at 12 o’clock on the wheel. I’m feeling confident again because today I put on makeup–which I usually only apply once or twice a week, but any day with makeup means no more “spoons” left for my hair. So I preplan to flat-iron my hair on Tuesday and put on makeup Wednesday. Thursday is a French-braided ‘do and by Friday, my hair will be dirty, but perfect for a slick-backed pony and light makeup again. High pain days means no hair & big sunglasses and I thank heaven beachy-messy waves are ‘in’ again.

I made seven stops total on my way to finish the errands and eagerly punch in every address (even though I know the way) to avoid Miami traffic and save my stiff hips from more abuse. I finally arrived back home after four hours and crash on the bed. Before my head hits the pillow, I text my husband, “I can’t cook tonight. Order in?” And the days go like this: If I was out all day, we order in. If I worked from home, I cook dinner.

So you see? How can self-care and careful “spoon” maintenance planning equate to my life revolving around RA? Just because I’m an advocate, just because I blog and I tweet does NOT mean I let my life revolve around my RA. I don’t let RA stop me, but we have agreed to slow down. The majority of the time, slowing down frustrates the heck out of me, but since slow is as fast as I can go, I will continue on–slow and steadily ahead.

The Support System – Loss & RA

Those closest to me know why I’ve been gone seemingly without a trace, but for the rest, I thought I’d let you all know. It’s taken me this long to settle back into “reality” knowing less than a month ago our family lost a bright and shining star. Joyce Aleite, my father-in-law (and second dad) suddenly became our guardian angel just 4 days after Thanksgiving.

There are still so many negative emotions, but the surreal-ness has dissipated for me leaving behind only urgency to hold my husband and our friends and family close. I met Joyce Aleite just after I turned 18 when Andres and I decided to reveal to everyone we were more than just friends (I needed to be legal first!😉) The first thing I noticed was that Andres is his dad’s clone. The second thing I noticed was his indecipherable Chilean accent. (I spoke virtually no Spanish when Andres & I began dating though I caught on quick to the Chilean slang. i.e “che” & “huevon, which actually means ‘friend’ and not an insult”). I soon also noticed that his love was unbounded—and not just for his kids (though they were the entirety of his life’s meaning) but every person he met. Waiters and waitresses who regularly go unnoticed, he asked their names and about their families. For me, he never let me get my own glass of water. I always had to jump up out of my seat quickly and snatch the glass up before he could reach it. When I didn’t know how to even fry an egg, he taught me how to cook. First pasta, then chicken, then steak (though I haven’t quite mastered the last one.) I made him an inedible lasagna once and he ate it gladly. He bought me my first walker, then my first wheelchair and never stopped paying for my medicines because he loved his son so. I was embarrassed when he told anyone who met me that I had a terrible disease, but I knew he did it so they would understand. He cared about shit like that, people understanding me and what I go through. I’ll never forget the day he personally delivered my medicine to our apartment when I was alone and after seeing how difficult it was for me to walk, he brought me a four-footed cane the very next day. I wanted to see him retire and grow old—though he would argue he did grow old. Selfishly, I wanted him to be around even functioning at 50% than die with dignity and nearly perfect health. I hate saying his name out loud now and I simultaneously want to bring him up in every conversation. I hate people who say he lived a full life even though he himself said it every day. I hate thinking of moving on without him being here to cheer us on, knowing his last words to us were “go, go, you guys can go. I’ll be fine.”

This post was a hell of a lot longer than I meant it to be. He was a Joy.

This is an article written for VectraVoice on published on our wedding anniversary last year. 🙂 Read the Team Approach to RA: Hate the RA but Love Each Other

Tune into Dr.Phil Nov. 29th!

Last month I got the opportunity to be on the Dr. Phil show for Rheumatoid Arthritis awareness! It was an awesome once-in-a-lifetime experience and I feel so honored to put a different face to this invisible illness. Rarely do us in the chronic crew get the opportunity to share with the public how Arthritis affects us, so for that reason, I’d LOVE for YOU to share your face with @DrPhil on Twitter/Facebook/Instagram on November 29th with #RedefiningRA!

The segment airs November 29th, so tune in next Wednesday! For local listings, click here.  …SCROLL DOWN FOR VIDEO!13861109-E4AF-4CC7-A264-AEDAF908AF22.JPG

D is for Disabled

So, this is going to be embarrassing… Today I got my first D since 11th grade, second D ever.

In case you didn’t know, I’m in my Junior year of college majoring in Psychology and minoring in Statistics. And.. I love school. Always have. Not really the institution of it, but I do love learning and reading. When my RA came back at 17 after a remission in my teens, my schoolwork became the first casualty in what I like to call, “My RA vengeance.” I’ll never forget hobbling around on crutches, not being able to hold a pencil and vomiting in the trash can at the back of the class after being put on Methotrexate for the first time in my life. I dropped classes, abandoned classes, and the W’s racked up.

After everything I’d done–getting into the School for Advanced Studies (a dual-enrollment program) at 16 and graduating early, I dropped out of college in my second year. Truth be told, I took too long to drop out. I waited until I literally could not walk anymore and even showering became impossible. Looking back, I wish I had accepted my new reality sooner.

Fast forward to 2015, I started feeling better and I immediately enrolled at Miami Dade College. It felt amazing to be back to doing what I love and my grades reflected that. Being in school (and doing well) reminded me of who I used to be–energetic, zealous, and tenacious.

That all vanished the second I saw the D at the top of my test paper. I know I have been feeling really bad lately, but how is it that my grades are always the first to suffer?

I know my pain has been making it extremely difficult for me to focus in class and the fatigue has dwindled my motivation to study, but am I really making the same mistake all over again? I don’t know what to think–do I finish school the best I can or do I drop out now and salvage my 4.00 GPA? My biggest mistake before was not reaching out to the Disability Resource Center at my school as soon as I felt sick. In my defense though, I had no idea what was wrong with me and (naively) thought I’d get better in no time! This time, I learned from my denial. I contacted the DRC and I’ve communicated with my professors, but when they don’t know how to help me and I don’t know how to help myself (beyond asking for a scribe or dictation software), what else is a girl supposed to do? (BTW, the DRC doesn’t offer any help with typing or extensions on deadlines–I asked.)

I was so disappointed with myself and really felt like quitting until… I got these messages. Screen Shot 2017-11-20 at 3.48.45 PM.pngScreen Shot 2017-11-20 at 3.50.59 PM.png

Being a part of a community online and getting to know individuals who truly “get it,” means everything. Encouragement from so many people–friends, family, and my chronic clique–reminds me that even though I stumble, (often and awkwardly) the most important thing in life is that I pick myself back up. 🙂

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