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21 Things Only People Living with Chronic Health Problems Know

To the fighters, toughies, troopers, hooligans featured alongside me: 
Thank you for being so tenacious, resilient, hardy, persistent, 
enduring, relentless, and stubborn.
Thank you for never giving up. 

Thank you for being so damn unshakable.

Buzzfeed | Lliving with Chronic Health Problems

RAConnection

There is something irrefutably amazing about being able to communicate across 
time zones and continents with fighters, survivors – exactly like me.
As you all probably know, right now, there are hundreds of articles expressing that Social Media (or the internet) is replacing our relationships. 

I’ll tell you this, as a 20-something-year-old disabled girl, I beg to differ.

Recently, I wrote a research paper for school discussing this very topic. Being that it was a formal paper, there were a lot of things I wasn’t able to say. 
If you’d let me, I’d like to say those things now:
Having Arthritis is scary.
Just walking into a doctor’s appointment is scary. 
“Is the doctor going to help me?” 
“Is he going to believe my pain is real?”
Being surrounded by patients 3-4x your age that are disfigured, crippled, wheelchair-bound, visibly in pain, thin, and who frankly -no offense- look like they’d be better off in heaven than suffering any longer… is saddening and traumatizing.
“Will I be wishing for death when I’m their age?”
“Will I even reach their age?” 
Again, Arthritis is scary

Even though I still wish I was the only girl in the world with RA, I’m eternally grateful for my #RASisters and my #RADudes.
For me, the Internet is all I have to communicate and connect with people like me and I wouldn’t trade that for anything! 
These men and women, young and old, EXTRA-ordinary people who fight an invisible pain 24 hours a day/7 days a week. Friends, who not only personally know every tear, every pain, every disappointment, but also have the heart to offer comfort and advice to someone else. Friends who are feel like they’ve been run over by a truck, but want to know how you’re doing. Friends who will find a remedy and immediately jump online to share it others.  

Friends, I can’t get over you. And yes, I thank the Internet for that. 
Thanks, for allowing me to make life-long relationships across space and time. 

Absolutely nothing can replace the feeling of relief brought on by a friend 
who reaches out at the exact moment you need it.

Meeting my Rheumy Friends for the first time. 🙂

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.

School is in Session!

Hi Everyone!!
So, today marks one week since I restarted college. For those of you who know me really well, you know it’s been a long time coming. 
I have been dreaming of this day for a while now.
The “short” break Arthritis forced me into has taken…. drum roll please…. 3 years. 
       Can you believe it?
If I didn’t have Arthritis, I’d probably have my PhD by now! All my friends from dual enrollment graduated with Master’s two years ago.
      That was a hard pill to swallow… Even among the giant pills I already take for RA.
The first week hasn’t gone as easy as I thought.
I’ve forgotten the rhythm and I feel a bit lost. 
A bit different from my other classmates. 
I have this fear that even as far as I’ve come, I still won’t be able to keep up.
I feel as old and tattered as the used books I bought over Amazon.
The one thing I do know for sure is that I’m not giving up.
Oddly enough, school is just like Arthritis.
The going might get tough, but “the tough” get going……
And I know, I’m definitely ‘the tough.’

http://giphy.com/embed/TrrecytbGL4kg?html5=true
         #lifestoughgetahelmet

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