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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.

New Patient ✔

There is something so odd about going to my Rheumatologist, Dr. Weitz’s office and seeing all these people, patients, like me, at different stages in their journey with Arthritis. 

Last Thursday, as I was walking out of Dr. Weitz’s office I noticed that in the waiting room was this woman that I could easily identify as a New Patient. It was so odd to me, seeing her there. I could tell she had Arthritis and something about her made me want to reach out and touch her shoulder and tell her:
 “Everything’s going to be okay. I’m here for you.” 

And to think, maybe she’s experiencing these unusual symptoms for the first time. Maybe she doesn’t even know what’s wrong with her and here she is, sitting in a waiting room with all these “sick people” in wheelchairs and with walkers and canes. How terrifying we must all look to her. How scared the woman must be. I know I was. 

It felt as if I was having a flashback of when I was the New Patient, anxiously sitting in the waiting room -scared to death of what the future might hold. I had so many unanswered questions. Will I be able to walk again? Is this doctor going to help me? How bad is my RA? 

I had had a rheumatologist before, the same one who diagnosed me when I was 5 years old in 1996. But, to be honest, we weren’t getting along. I felt like he wasn’t treating me or at least trying to treat my disease. We disagreed a lot on how well my Arthritis could be controlled. He told me multiple times that I should just accept the fact that I was disabled now. But I wanted to fight back, try any and every treatment available. 
Well, finally, one day, my husband and this rheumatologist got into an argument about my prognosis. We told him we weren’t ready to just “accept it and move on.” I was too young for that! I was 19 and still had many more fighting years left in me. If the treatments didn’t work, fine. But I wasn’t going to give up WITHOUT EVEN TRYING! 

Me, at my first-ever infusion.
So, that’s how I ended up in Dr. Weitz’ waiting room -5 years earlier- sitting scared and confused just like the woman. If I could say anything to her and to other new patients, I’d say: 

We’re all just like you, waiting, hoping, praying, fighting. We’re here for the same reason. To fight this disease and aim for success in better health. We’re here because we’re fighters.



Exposing my Truth

So, I guess it’s time to be honest about why I haven’t been writing as much. 
Don’t get me wrong, I am writing. Journaling on my own, like I always have. 
I’ve also been writing articles for different websites as well as essays for school. 

But that’s not why I haven’t been writing here, sharing with you all what’s going on with my life like I normally do. I pride myself in being transparent with my description of life with Arthritis. 
I don’t hide the nitty-grittyThe jaw-clenching physical pain, as well as the psychic pain I experience on a daily basis. 
It’s much easier to do this in writing than it is in person. Overwhelmed by my desire to not let my symptoms overshadow my conversations with loved ones. I smile though my mind is on my knees because I’m genuinely happy to see them. I choose to be in the moment. The result is often me stumbling later from exceeding my boundaries in the hope to “help” wash the dishes. Very few recognize this meager out pour of sacrificial love. It’s all I have to give.

…I think I’ve been delaying exposing the truth by going underground…

I’m struggling with getting my treatments. 
They are never on time and the costs are sky-rocketing. 
I don’t know if I can keep going this way.
My studies are suffering due to the obscene amount of calls I make daily to the insurance company, the pharmacy, the doctor, various foundations…
Unfortunately I’m not becoming an expert, I’m simply getting sidelined by the lack of valuable information available. 
Every truth is contradicted by another agent, another supervisor, another “expert”.

My pocketbook is empty, both by the amount of “minutes” I spend on these calls, as well as the costs of treatment.
It all came to a head yesterday when I received a payment notice of almost $500 for a medication I was previously told was $70. I was ordered to pay within 10 days, as if that were possible. The process of filing an appeal is 60 days.
This is just one on top of the other medical bills that have come through the mail. The amounts owed quickly climbing to $2,000.

If I could just get this, my most important treatment administered on time and at a reasonable price, I’d be relieved. This is the medication that has given me back my ability to walk. This is the medication that I’ve spent five years searching for. Five other treatments failed before trying this one.
 This is the only one that works.
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