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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!

My Weight Loss Journey with RA

Anyone who says that exercise is easy, is lying. Especially for those of us living a #chroniclife. 
If you’re on the fence about starting exercise, do it.
It’s a decision that I can guarantee you will never regret. 
 
I know this may sound a bit corny but my New Year’s Resolution this year was to lose some weight.
I’ve written a little bit about my weight gain here, but to be completely honest…I haven’t been completely honest. For obvious reasons. I was/am ashamed, embarrassed, humiliated and I really didn’t want to bring attention to my growing midsection that has nothing at all to do with creating a miniature human. But actually, the main reason is I didn’t think I could lose the weight and it has everything to do with my RA. To recap, in the last 8 years since my RA vengeance, I’ve gone from weighing 98lbs to being in a wheelchair, walker, cane, to walking sans assisted devices, to a whopping 138lbs. (This may not sound like a lot to you, but keep in mind, I’m 5’1” and small framed. Normal weight for my size is 105lbs.) I’ve been on high dose prednisone far too often, done countless cortisone shots, *tried and failed* Enbrel, Remicade, Actemra, Methotrexate, and Arava. Now I’m doing well back on Methotrexate (after over a year break), plus Plaquenil and Orencia. 

 

So, my concerns about losing weight were/still are:
  1. My meds won’t let me lose weight. Many people, including myself, have expressed the opinion that weight gain is a common side effect to any/all treatments. I don’t believe that’s true for everyone, but I definitely believe it’s true for me. After starting treatment, I never ever got back down to 100lbs, but to be completely honest, I don’t care! Weight gain as a side effect still makes being on treatment worth it. I would choose being able to walk over being skinny with joint damage every day of the week, including Sunday! 
  2. My physical limitations won’t let me lose weight. I’ve spent more years on crutches, in a wheelchair, with a walker, or a cane than I have without some sort of aid. This means I have some muscle atrophy in legs. Plus, I still have trouble walking for long periods, can’t do stairs, can’t run, etc. Basically, I’m weak and I’m slow. So how the heck am I supposed to lose weight without being able to speed walk or run??? Oh and I forgot to mention, I flare up pretty bad the week my Orencia is due, so… even if I could exercise once a week, it’d be restricted to a 20 minute slow walk around the block 3 times a month. This doesn’t look good.
  3. My Gastroparesis means I can’t eat any vegetables whatsoever. The deal here is: I love vegetables. I literally crave salad. I used to be a huge veggie/salad eater before I got diagnosed 3 years ago. Now, I can’t even look at a strawberry without having to throw up. I can’t eat the skin of apples, I can’t eat grapes, nuts, or anything fibrous whatsoever. What I mostly eat is pasta, rice, whatever protein like lean chicken or porkchop, and cereal. Basically carbs, carbs, lean meat, and carbs! Oh wait, did I forget to mention, carbs? It’s pretty annoying, but you can see why I’d be concerned about my ability to lose weight. And I do know other RA patients with gastroparesis who were diagnosed as children, like me, who struggle through the same thing.

Now, I’m not completely ungrateful. I obviously know that there are people -a lot of them good friends of mine- that are much worse off either because of dietary restrictions or because they’re confided to a wheelchair.

I know what that’s like. 

 

I remember when we were at our old apartment and I needed help just to get out of bed. I remember trying not to drink water close to bedtime so I wouldn’t have to pee in the middle of the night and have to wake up my husband to ask him to help me get to the bathroom. The nights that I couldn’t help it, I’d quietly and self-consciously ask him to hold my walker (which we called my “boat”) steady while I struggled to shuffle my feet forward the 12 steps to our bathroom. I remember crying when I first discovered my walker couldn’t fit through the door frame of our tiny bathroom. Then, we came up with a plan. I tucked two canes just inside the doorway, so right when I got to the bathroom door, I’d do the ol’ switcharoo. I’d grab my two canes, shuffle the two steps to the toilet, get help coming on and off, and return to my “boat” parked just off the door’s outside molding. Of course, there were many corny jokes going on during these night-time escapades. As soon as I was done, however, I’d feel worn out, like I’d just run a marathon, and my husband would push me in my boat the rest of the way back to bed. 
 
All this is to say that exercise is definitely not easy, not in the slightest. I also know that exercise may not be possible for everyone, but if you think that it is possible for you to do one thing, whether it be raising your legs from a seated position or raise your hands up over your head like a half-jumping jack, do it. 
Even if it can only be once a week, three times a month. 
 
Even after I (secretly) committed myself to the New Years weight loss goal, it still didn’t click right away. Nothing worked until I went to a conference where a doctor told me she believed there was a correlation between weight and disease activity. She told me that it is possible that losing weight might help my RA! You can read about it at here! (We already know that with each excess pound of weight, 4lbs of pressure gets added to the knees. Thank you, Arthritis Foundation! 🙂

It was at that moment I decided it was time for me to help myself.

So, I decided to forget about my weight loss goal. 
I don’t have a scale in my house so it actually wasn’t that hard practically speaking, although emotionally, it was a little more difficult to let go of my New Year’s resolution.
Though I did join weight watchers just so I could keep track of activity and food intake on an app, and I focused on small goals. 
At first, I walked really slow. Then, after about a month, I started walking faster, increasing the time from 20 minutes, to 30 minutes, and now 45. I was barely able to bend down before and now I can do about 20 squats or 5 jump squats. My thighs feel huge to me in an incredibly uplifting and sexy way and my self-esteem has skyrocketed. 

I can run sometimes for almost 2 whole minutes and I really can’t put into words how amazing those two minutes feel. The wind against my face and through my hair feels magical. When I’m not admiring the streak of green trees in my vision, I close my eyes and pretend that I am flying. The sensation of running has become my happy place, even though it is short-lived and my doctor has told me not to run anymore. 
I doesn’t bother me, because I remember that this is not about weight loss goals or exercise goals, its about my health. That is what’s important to me. 

And low and behold, believe it or not, I did lose weight. 
Without a real “diet,” just making healthier choices, I’ve lost 24 pounds. I’m nowhere near my previous 98lbs, but honestly, I’m happy I’m not. 
I think I look cuter this way, and to me, it’s not about the number on the scale or how many times a week I hit the pavement. I do whatever my joints feel up to doing, even if it means laying in bed all day. 
What is important to me is that I try my best at least once a week, and I’m proud of myself for that.

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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