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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?

What RA Pain Does To Me: A Practical Story About Just Yesterday

So it been a crazy month with as you all know, worsening back & hip pain. 
It’s so crazy, that just yesterday I was in pure agony. 

It’s almost remarkable how pure the pain was. So intense was I panicking, whimpering. 
I wanted to cry, but I couldn’t. The tears wouldn’t come so I just dry sobbed, my face contorting in ugly ways. I just wanted my husband so badly, by my side. He always makes everything better. Knowing exactly when to laugh and when to cry as well. 
Right now I could use his gentle pat and reassurance that I would make it through, I would survive this, and the pain wouldn’t actually kill me.
But he wasn’t here, he was at work and it was up to me to make myself feel better. 
So I did everything I knew to do. I got up and painfully shuffled over to the pantry where my trusty cane was hidden -the perfect spot in the center of our tiny place, right next to my swiffer. 
Two perfect representatives of my disability. A cane to help me walk and a mop that I don’t have to ring out, scrub with, bend over, or carry a bucket. I can just spritz, push, and then throw away the dirt. 
 
But anyways, back to the story. 

So, looking into the closet, I grab it and two ice packs out of the freezer, tucking them into my hip and back and I let the cold do its job. Freeze the pain. Even with the cover and blanket, my skin still turns bright red with the pressure with which I beg for them to work. And it did, for as long as it was cold. But our Miami warmth doesn’t let anything stay cold for too long and the ice packs melt away way too soon. 
Heat now, right? Yes, I was remembering. My first aid lessons for any trauma or inflammation. RICE. Was that right? Cold, then heat? Should work. Will it? I don’t know if this trick applies to people with a faulty immune system. Whatever… 
I try it anyway and add in a 20mg tablet of prednisone for good measure – remembering my dear husband’s advice from the night before. When the pain first reared its ugly head. 
   “Here, boo. Take this. Did you forget your infusion is next week?”
   “Oh yeah… That’s right. Great!” I rolled my eyes, “perfect timing for me to be working on this speech.” 
The flashback is so clear in my head. It’s funny how I remember his words of wisdom whenever I’m alone and don’t know what to do. It’s even funnier that he remembers all the advice I forget to give myself! I’m the one who’s had RA for 20 years, he’s only even known about RA for 7. 
I guess he’s really is becoming my new “cane” or “crutch” or whatever you want to call it. 

Eh who cares, I think to myself with a smug smile, I can’t do it all–be in pain and remember what to do about it!
Then, more solemnly, I think, I need him. No one should do this on their own.
And I jot the thought down. Adding it to the running list of ideas I have to help my RA community. 
“Ways to strategically and manipulatively encourage patients to find someone, anyone -doesn’t have to be a spouse, could be a distant family member, a cousin, a friend, a colleague- anyone to confide in.” RA is so isolating -I know that personally. It’s so hard to make friends when I’m constantly struggling to keep up with people even 3x my age. Not to mention, the worry that any outing means they can’t relax and enjoy because they’re having to recalibrate their speed down to my level. 
But anyways, back to the story.

So I pop in my prednisone, silently praying for it to work and I turn on Netflix to one of my favorite shows, The Vampire Diaries. 
Utilizing one of my other techniques in managing pain and flares. Healthy distraction. 
Plus, this show always puts a smile on my face. I’m not taking about RA, I’m not thinking about RA, I’m enjoying escaping into the world of vampirism where regular human beings can be transformed into the supernatural. They can run fast, they can heal instantly, they can live forever, and they don’t have to consider the future. 
“How awesome would that be,” I think to myself with not so many words, “I wish vampires were real. I would want to be one, just so I could be cured of my RA.” 

Oh great, here I am thinking about RA again. But next thing I know, the episode is over and the ending reminds me to not leave the cold on for too long and put my ice packs back in the freezer for later. How responsible I’m being! I’m so proud of myself. 
So I decide to go back to my secret project and work some more. 
Standing this time, trying to move around. That’s supposed to help right? Nevertheless, a few minutes later the pain peaks, but I push through anyway, reminding myself I’m supposed to move around. Laying down watching The Vampire Diaries won’t help forever. So I continue my work, focusing on my “rheumy” friends I care so much about. 
Over an hour goes by and I feel like I’m going to collapse. My knees now are hugely swollen and I struggle just to crawl into bed. 
“I just need a little break. No more moving.”  
So I lay down and put my favorite cutting board on my lap, using it like a desk to hold my papers. Not long after though, the pain intensifies and I start really getting scared. 
So I took a half of a pain pill and waited. 
The pain got worse.
I have to pee but -oh God, no- I can’t get up. It hurts too much. 
Bargaining with my subconscious, I decide to go restroom and grab my ice packs from the freezer on the way back to bed. 
I knew I would need them later, I thought to myself, figuratively patting myself on the back for thinking so far ahead. 

I apply my ice packs with their covers and press them deep into my hips, forcing them to work. 
I sigh and wait, but nothing happens. Nothing except more pain. 
Oh my goodness this cannot be happening. What if I this doesn’t go away? What if I can never get up? What if I have to pee again? I felt myself starting to panic. 
So I pop in my mouth another 20mg of prednisone. I’m at 60mg now in less than 24 hours. 
This has to start working soon, doesn’t it? Does this drug even work like that? I don’t know if I’m doing this right. I add another a half of a Percocet, just because I felt myself getting really scared of the pain. 
It hurts so much not even my “healthy distraction” is working. God, it hurts. I find myself literally crying from the deep hurt and I remember why I need pain in my life. It’s so humbling. Never could I ever get big-headed about all my ideas. The pain reminds me that I’m really nothing more than the product of the mercy of a redeeming God and caring friends and family. 
The pain reminds me that without them, I would be nothing more than a heaping mess. 

Its at that time I decide I should see another episode of The Vampire Diaries and put on my hot pack. The pain peaks higher and higher and I start getting even more terrified. 
How is this happening to me? Shouldn’t my pills and my packs stop it? Lessen it? It feels like fire and a sharp knife sawing away my legs, right at the hip. It’s a sharp, deep pain and so overwhelming. I couldn’t sigh or relax muscles, even if I wanted to. I’m so tense with hurt, fear, and anxiety that my breath comes and goes in shallow and quick bursts. Pain. It feels like my body is literally trying to push it off of me. Like a thick heavy blanket. But I feel it deep in my bones. And then I remember that it is deep and in my bones. I remember how severe bone pain is rated on the pain scale and it comforts me, knowing I’m fighting one of the worst pains the human body can physically go though, on a daily basis. 
It reminds me how tough I am. 

But nevertheless, I pop in another half of a pain pill, because the truth is I’m starving and the only way I can make myself a PB&J is if I get up, which I don’t think I can. 
This time I struggle harder to pull myself out of bed and I wince loudly with each micro movement. 
I instantly wish I had my walker. It was so much easier to deal with hip pain then, having the ability to take my body’s weight off of my hips and onto my arms when my hips couldn’t take anymore. I struggle to walk the 12 paces to my kitchen when I get halfway there I suddenly and seriously consider turning back to bed instead. This is too hard. It hurts to much. I need to sit, lay down, anything. I don’t want to be away from my ice pack or my hot pack. 
But I get there and toast my bread -the seconds seemingly ticking away hours- and grab the peanut butter and jelly, hoping this small prep will get me back to bed faster. It’s gotten so much worse in the last couple hours and I wonder why the prednisone isn’t helping. 

It’s then I remember Dr. Weitz’ words from just the day before. 
“If prednisone helps, it’s inflammation causing the pain. If it doesn’t, it’s joint damage.” 
And I practically drop my peanut butter filled knife onto the floor. 
Now I’m really scared. 

Something I think most of us fail to mention is how scary pain can be.
The fear that the pain is causing joint destruction
that soon you’ll be immobile, permanently disabled…. is petrifying.  
My intention with this post is to raise more awareness about the fear of pain and disability
in the hopes of combating that fear, together.

Fear of the unknown is something we all face, but I know sticking together 
will make the journey that much easier. 😉