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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. 🙂

Last chance for the RA with RA

As soon as I realized my love of scientific research ‪and my knack for statistics, I became eager to join a research lab on campus. I filled out two applications, got two interviews, and two offers! Then, I accepted a research assistant (R.A.) position in my dream lab! The Cognitive Neuroscience lab. 

At first I was nervous and wondered if my love of research would get satiated once I got a taste of what it was really like, but surprisingly, it didn’t! I’ve always been a dreamer and being in the lab- getting a tiny peak at what research was like up close- just amplified my dreams of answering my own research questions. And it encouraged me to pursue a minor and Master’s in biostatistics.

Then my dreams were shattered when just the other day the PhD student whose experiment I’m running ‬sought to fire me because of my RA (Rheumatoid Arthritis).

I’ve never been late to the lab in my life. I’ve attended nearly every weekly lab meeting, even after infusion appointments with out-of-town speeches/conferences being the one exception.

But just the other day, the day after my infusion, I became fatigued and accidentally overslept PAST my 12:00pm lab appointment. Since I got hired I’ve never once been late to the lab, even arriving on time at 8:45am after an hour of rush-hour traffic and a night of painsomnia. Oh, and I hardly ever sleep past noon—even on days I fall asleep at 7 or 8am. But for some reason, this day was different and I slept through my alarm and into the early hours of the afternoon. As soon as I awoke and realized the time, I immediately called my participant, apologized profusely, and promised to grant her credit for my mistake. My lab manager soon noticed my absence and (thankfully) being aware of my Arthritis, asked if I was feeling okay. I told her what had happened, apologized my heart out, and swore up-and-down it’d never happen again. Then, I threw on some clothes and raced over to run my next appointment. I thought it was over then. It wasn’t. My lab manager then approached me with the news that Ali (the PhD student) had instructed her to fire me for my first tardy. She then proceeded to apologize for disclosing to Ali that I had RA.

It had taken me months to feel comfortable enough to reveal my diagnosis and I had specifically asked for her to keep it to herself. But in this situation, she felt it necessary to do so to save my job and in fact told Ali, “It’s not like she didn’t want to be here. She wasn’t feeling well.” To which he replied, “Fine, but this is her last chance.”

Revealing my diagnosis had earned me a first and last chance to keep my job. All this time I had worried about losing my love of scientific research, I hadn’t even acknowledged the possibility of research not loving me.

WALK TO CURE ARTHRITIS #TEAMACHE

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! 🙂

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

JOIN MY TEAM OR SPONSOR MY WALK @THE YOUNG FACE OF ARTHRITIS #TEAMACHE A.C.H.E stands for Arthritis Can Hit Everyone

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