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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

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

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.

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. 😉

My Favorite Thing

For the finale of this First Annual #RABlog Week I’d love to share with you my 
Wildcard 2: Tell us what you really enjoy and how that helps with RA.
Well, that should be simple. Blogging, duh! 😉


I really can’t tell you how important blogging is to me. I love everything about it. 

So when I started this blog in 2011 on tumblr, I was very nervous. 
I really wanted my blog to be authentic. An honest reflection of my thoughts, whether they were likable or not. I wanted to never hold back and show what Rheumatoid Arthritis really looks like. Not like the bogus commercials on TV. 
But opening myself up was nerve-wracking! Especially to criticism, knowing that the whole entire world was reading my innermost thoughts!

So, cautiously, I wrote my first post.
       And then I figured out I only had like 10 readers, so I decided to let it flow! Ha Ha! 

For me, blogging isn’t about the amount readers or followers I have. As much as I love my readers and truly cherish the connections I’ve made through blogging.
I mostly do it for ME!
I was recently engaged when I started this blog and all I wanted to share my journey.
The magnificent ups and the treacherous downs in life with RA.

And not just my physical journey, but my emotional journey.
I don’t hide behind the curtain and share the pretty side to RA.
I share the bad times too of when I’m angrydisappointed, or in pain

But my absolute favorite part is sharing my victories. 
The good times, when I feel great! When I’m traveling, or gardening
But most importantly, when I accepted having Rheumatoid Arthritis. 
The truth is I believe having a Chronic Illness like Arthritis 
doesn’t just affect our bodies, it affects our souls as well. 
And I’d like others like me to know that it does get better. 🙂