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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

Mental Health w/ RA

Maintaining my mental health (together with my physical health) is the main reason why I started this blog. I wanted someone to talk about how living with a chronic illness has affected their spiritual and emotional well-being. But in a society obsessed with the “overcomers,” how do we take care of our mental health without having to have it totally together all the time?

1. Don’t. 

As a young person living with RA, nothing annoys me more than seeing perfectly perfect people on the cover of health magazines. You know which ones I’m talking about, the ones with perfect in-shape bodies, perfect homes, and perfect spouses who provide for their every need while they get to focus solely on taking care of their health.

Now, I have nothing against those who seemingly have it all together, but you know what I really love?? The people with RA who don’t. Those folks who show their vulnerabilities and who express their pain, their disdain at having this disease, and their anger at their relatives for not understanding. My life doesn’t revolve around Arthritis, but it has left its little mark on virtually every area of my life. So I love and respect the people who show itand other realities about living with a chronic disease.

2. Entertain your emotions and they will go.

A mentor of mine once told me a story about living as a young girl in Africa. Often, many of her friends and relatives from the US would come visit her missionary parents while they were living in Tanzania. Well, apparently, she hatedbeing visited by company. So her mother would tell her, “All we have to do is entertain them for a little while, and then they will go.”

There is nothing healthier than entertaining your emotions and letting yoed940647fa425a2192de32a493b31492--ugly-faces-hilarious-memesurself feel what your body, mind, and soul desperately wants you to feel. There are many negative repercussions to holding negative emotions in–including increased pain, depression, sleeplessness, etc. The point is, as much as Kim Kardashian hates her crying face, at that moment when she was admitting she was unhappy in her marriage, crying and expressing herself was the healthiest thing she could have done.

One thing my mentor (a licensed clinical social worker) likes to say is this: “Don’t be afraid of crying. You won’t cry forever. Eventually, you’ll fall asleep then wake up feeling better.” Pretty sound advice, if you ask me.

3. Promise yourself to wake up with a new attitude tomorrow.

This is something I like to do. It helps me feel less guilty about having a “bad day,” and gives me something to look forward to. To me, it doesn’t matter how many tomorrows go by before I wake up with a new attitude. We all know is that it isn’t always as simple as “promising to wake up better”–sometimes the “tomorrow” is even worse than the day before! What matters to me is that I tried to have a better day and gave that new day a chance. 

Living in my teens with depression meant that I was always concerned about the past. Focusing on today and the hope for a better tomorrow gets me through life’s tough patches.

A poem I used to read went like this: RABlog2017

Today, is here and yesterday, is gone!
Now, it’s time, you have to move on!
There’s no looking back, what was
before, for it just isn’t there, anymore!
You have to look, to the future and it
will show you, the way. For it’s the
beginning, of a brand new day! Time,
is the best healer, as everybody knows.
And whatever happens, is the way the
wind blows! Don’t ever look back, to
what was before, for it’s gone and
forgotten and not here, anymore! For
whatever reason, it was meant to be.
You’ll come out unscathed and happy
to be free!

Back to School- MAJOR Decisions

It’s that time again. August, when summer is nearly over and the majority of people are thinking about the start of the new school year. There’s tax-free weekend (when everyone stocks up on $0.01 paper and $0.15 notebooks), course catalogs, college admissions essays, and first days of kindergarten. 

However, this fall, for me, is different because I just found that I will be transferring at the end of this year, 2016, to a new university. I’ll tell you that I was more than a little stunned when I found out (I was freaking out, actually), because unlike other students who are concerned with rushing their studies and finishing as fast as possible in order to join the workforce, I’m battling a chronic illness. So, it’s a little overwhelming to have to make a decision on what I want to do for the rest of my life, when my future is so uncertain.

The fact is: I have a chronic illness I have to work with, so my goals need to be incredibly realistic -if not worse-case scenario oriented.

I’ve already made a lot of sacrifices becaues of my health, the #1 being my education. I’ve had to take a 3 1/2 year break to focus on my health, I’ve changed my major to suit my physical limitations, I applied for disability services, and I decreased my course load. All this in the hopes that someday, I will graduate and join the workforce too. Despite what people may think, like most all disabled folk, I do want to be a contributing member of society. 

The difference between me and even most people with arthritis, is the fact that most people with arthritis get diagnosed in adulthood, after college.  I was diagnosed when I was 5, which -the way I see it- affords me a certain advantage in that I can sort-of plan ahead for a career that doesn’t depend on me being able to walk, carry -virtually- anything, use my hands, or stand for long periods of time. The downside is, college life is harder for me because I have to actually deal with chronic health problems while everyone else my age is in the prime of their life. BUT I like to look at the positive. 🙂

One of my issues, though, has always been finding a career that I’m passionate about and that accommodates my physical limitations. 
I’ve had this quote on the stickie widget
on the dashboard of my mac since I first got it in 2011.
It reminds me that although it may be tough,
this time in my life will define me and
we’ll call it, “the great pivot,” when I didn’t give up
my dreams becuase of the practical implimations of Arthritis.

I remember when I was 16-17, I dreamt of becoming an architect. Just the thought of building something out of nothing, art that people could live and work in, was beautiful to me. Even after my RA came back with a vengeance (after a total remission in my teens), the dream wasn’t lost to me. I worked hard and studied for two years before I realized that it really was just a pipe dream. My hands would hurt and swell up horribly after drawing and by the end, I could barely even hold my favorite Faber-Castell 2B graphite pencil.

It really was during the time that I started my blog and started communicating with other people like me online, that I started realizing a new dream. A dream to help people like me cope with the emotional struggles of having a chronic illness and encourage them to take control of their disease, just as I had to do when I transitioned from the juvenile (in-the-dark) patient, to the independent adult patient. 
It’s just as I’ve said before and I’ll keep saying, chronic illnesses don’t just affect our bodies, but our hearts and minds as well. My ultimate goal is to use my own struggles for the good and benefit of others going through similar experiences, as well as to offer guidance and support.

No matter what RA does to me, I will never stop dreaming.
I will never stop having goals for myself, big or small.
School is my biggest and toughest goal, but I won’t give up
because the one thing RA has taught me is perseverance. 

Enjoy Ella’s Voice at Ella Baker Center.

Painsomnia #TheStruggleIsReal

The struggle with having a virtually invisible disease like Arthritis, is that I think people actually forget that I am a REAL patient with REAL symptoms. 
Although I’m doing really well on my triple-combination-treatment therapy, I still struggle daily and experience flare-ups once or twice a week. 
One of my struggles is sleep. 

These days, I sleep about 4-5 hours a night -if I’m lucky- and my current record for the no-sleep marathon is 42 hours. 
I’m actually quite functional on even 2-3 hours of sleep, as long as I sleep well once or twice a week, but lately, I haven’t even gotten that.

My main problem is stiffness. 
I’m constantly getting in and out of bed just to crack my joints. Last night, I even did some “in the dark” yoga because I was desperate, but no cigar. Even though I lay with a hot pack virtually every single night, it doesn’t quite get me comfortable enough to sleep. I don’t know what the deal is! And the only time I actually can sleep is when my body gives out…at really strange times…like when I’m driving or in the middle of a really interesting lecture or during dinner. No bueno! 

For those of you who know me personally, I tend to typically be a pretty high energy person and oddly enough, that hasn’t changed! I just pass out at inopportune times. Then, after a quick nap, my body is up and ready to go again! You’d think that’d mean that I take naps every day, but I don’t, because I want to SLEEP. AT NIGHT. LIKE A NORMAL PERSON.
I’ve even tried losing weight and working out to help my body feel more tired, but again no cigar!

All this is for the purpose of clearing up any idea that just because I look fine, I am fine. 
I am trying really hard and I do feel pretty great a good majority of the time (You should see all the stuff I can do now! 🙂 
However, I think that a lot of people get the misconception that just because I’m on treatment, I’m cured. This is not true. 
I am a real patient with RA who has to deal with managing a life, despite pain and stiffness. I’m a normal person with an abnormal immune system. I’m still figuring it all out.
 This is simply my journey.

The one thing I hold onto is this:
It is not the problem, but how we deal with the problem that truly defines character. 
My problem is Rheumatoid Arthritis.
What’s yours?
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