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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

What I want people to know about RA.

I’ll never forget the time someone asked me why I let my life revolve around my Rheumatoid Arthritis.

I almost laughed, because the truth is, I don’t.  In fact, I like to think that my RA revolves around me.. for the most part. So here I am, living life with RA following me around like a lost puppy:

Today, my thumb kills me every time I move it. For those of you who don’t know what that feels like, it feels like having to go through life with a workman’s clamp closed on your joint. At first, it’s not so bad, but after a few hours (or days), the joint is so swollen and red, it’s warm. Then it feels like I slammed a car door on my thumb. I notice it’s getting worse when I absentmindedly begin using my dominant hand less and less. But I do my best to continue my daily tasks, like stapling billing paperwork, for example. I consider going paperless to save my thumb…(Tonight I’ll search Amazon for an automatic stapler). As I drive to the Tag agency, my vision started to blur and my eyes grew heavy even though I woke up only 3 hours before. So I immediately detoured home to rest/replenish my “spoons” before continuing my day.

Two hours later, I set out again, driving coolly with my left hand at 12 o’clock on the wheel. I’m feeling confident again because today I put on makeup–which I usually only apply once or twice a week, but any day with makeup means no more “spoons” left for my hair. So I preplan to flat-iron my hair on Tuesday and put on makeup Wednesday. Thursday is a French-braided ‘do and by Friday, my hair will be dirty, but perfect for a slick-backed pony and light makeup again. High pain days means no hair & big sunglasses and I thank heaven beachy-messy waves are ‘in’ again.

I made seven stops total on my way to finish the errands and eagerly punch in every address (even though I know the way) to avoid Miami traffic and save my stiff hips from more abuse. I finally arrived back home after four hours and crash on the bed. Before my head hits the pillow, I text my husband, “I can’t cook tonight. Order in?” And the days go like this: If I was out all day, we order in. If I worked from home, I cook dinner.

So you see? How can self-care and careful “spoon” maintenance planning equate to my life revolving around RA? Just because I’m an advocate, just because I blog and I tweet does NOT mean I let my life revolve around my RA. I don’t let RA stop me, but we have agreed to slow down. The majority of the time, slowing down frustrates the heck out of me, but since slow is as fast as I can go, I will continue on–slow and steadily ahead.

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

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.
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