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Posted
January 12, 2015
Category
arthritis, arthritis foundation, autoimmune disease, blogging, childhood disease, chronic illness, chronic pain, juvenile rheumatoid arthritis, rheumatoid arthritis, rheumatology, share
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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

Posted
October 14, 2014
Category
arthritis, autoimmune disease, blogging, childhood disease, chronic illness, chronic pain, disability, invisible illness, juvenile rheumatoid arthritis, medical, rheumatoid arthritis, rheumatology, share
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Reconciliation Part 2

For a long time I didn’t see or even speak to my Mother.
Just knowing I was going to see her would bring on the worst feelings in the world.
It was like a combination of anxiety and resentment building up in the pit of my stomach.

My mom had me young. She was 17 and in her first semester of college when she got pregnant with me. Then two days after her 18th birthday, she married my dad, dropped out of college and moved to New York to have me. 
So, a few years ago when she decided to go back to college and fulfill her dream of becoming an Accountant, I was supportive. I thought it was a great idea and very brave. 

I wasn’t at all jealous of the fact that I- 21 years old at the time- couldn’t go to college because I was too sick from my Rheuamtoid Arthritis. I had always said how I felt my life was “on hold”, my youth “wasting away” while I fought this seemingly “old person’s disease.”

So when she called me one day hysterically crying, I wasn’t just surprised, I was annoyed.
She explained to me how her college had suspended her Financial Aid due to the F grade she received in the class she never finished back in Fall of 1990. 

(…The same semester she dropped out upon realizing she was pregnant with me…)  

She sobbed, “Now I have to wait one semester, before returning to college because of a mistake I made 21 years ago!” 
Slighted, but still with a patient attitude, I explained that even though this was disappointing news that it would be ok and she could return to college NEXT semester. No big deal. She’d only have to wait 5 more months before moving on with accomplishing her dream. I even told her to think of it as a break! Time to prepare and relax before jumping into something new and challenging. 

Of course, this meant nothing to her and no matter how hard I tried to reason with her on how they had only suspended her Financial Aid for ONE semester as punishment, she continued to cry and complain. 

So… I thought I’d try to relate with her. Make her feel like she wasn’t alone.
I explained my own situation with RA and how disappointed I was that all my friends were graduating with Masters while I was stuck at home, sick, unable to accomplish my own dream.
I explained how even though I did get down about it sometimes, I had hope that one day (..who knows when..) I’d hopefully feel better enough to go back to college and get my degree.
I even told her, “This is only temporary. At least you know that in 5 months, you WILL get your Financial Aid and you’ll be able to go back to school.”

I don’t really remember what happened next. All I remember is that the whole conversation lasted almost 2 hours and by the end I was furious. 
I told her she was a brat and that I never wanted to speak to her again before hanging up. And I didn’t speak to her again. Until now. 

Posted
July 17, 2014
Category
arthritis, autoimmune disease, blogging, chronic illness, chronic pain, disability, health insurance, healthcare, invisible illness, juvenile rheumatoid arthritis, rheumatoid arthritis, share
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Medicare – The BEST 23rd Birthday Present

So, last week was my 23rd birthday and I got the greatest gift I could ask for. 
I got Medicare.

I haven’t had health insurance since May and for someone like me, it can be really stressful. Not knowing when I’ll be able to get my Orencia Infusion again. 
It is not easy. Especially when the treatments that give me back my ability to walk cost thousands upon thousands of dollars. Cha-ching! I don’t think so…!

Because I’ve been without Health Insurance, and therefore, my medication, I’ve felt my Arthritis slowly rearing its ugly head. 
Everyday without these drugs is a little worst than the day before. 

Luckily, I’ve still been able to do things I haven’t done in years, but even now, just two months without Orencia, I can’t sit in a chair for long periods of time anymore. I need to get up, move around, lay down, change positions because the stiffness in my spine and hips is so painful. I feel more of a difference in my extremities now, my wrists make it harder to write or even type on the computer. My toes are little swollen, painful sausages that make it difficult to sleep.

Even though I’m experiencing more of the regular ol’ Arthritis symptoms, 
I’m still incredibly grateful that I will be able see my Rheumatologis and get my treatments again soon. Without this 23rd birthday gift of Medicare 

(health insurance for old people and the Disabled) I wouldn’t be able to afford these treatments that keep me out of my wheelchair. 


Posted
June 22, 2014
Category
arthritis, autoimmune disease, blogging, chronic illness, chronic pain, disability, exercise, hope, invisible illness, juvenile rheumatoid arthritis, miracle, rheumatoid arthritis, share, vectrada
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I’m TOO Fast, TOO Furious

So, Andres and I went to Coconut Grove Park to get in some exercise and go walking- without my cane– for the first time! I cannot even tell you how amazing it was to see all that I could do. I haven’t been able to walk without some sort of aid, wheelchair, walker, or – most commonly- my cane in YEARS. 
Walking without my cane for the first time! We had to capture the glorious moment. 🙂

My cane was like an extension of my arm and I would use it to open and close doors, get things off the top shelf, and even balance it in a way where I could lean my buttocks against it and get some pressure off my knees. (Yes, I was pretty creative about figuring out different ways to use it. lol)
There were pros and cons to having my cane. On the one hand, I could walk a lot easier, without so much pain and go further.  But on the other hand, I could only carry one thing at a time. Just feeding myself was a pain because not only was it extremely difficult to carry a heavy plate, but I couldn’t carry a plate of food and a glass of water at the same time as my right hand was being occupied by my cane. Same things goes for doing laundry, I only had my left hand to carry all these clothes so I’d have to make multiple trips and because walking was excruciating, by the time I made two trips to get the clothes to the washing machine, I’d be down for the count.

 Look at me working out my legs! Haha!  

I can only tell you that the first week –at least– without my cane, I felt so outside myself. Like I could carry so many things at once. “So this is how normal people feel,” I thought to myself. Walking to and from places still feels so fast. It’s like when you say, “Pause the movie real quick. Let me get us some popcorn, I’ll be right back,” before, depending on many variables- like the weight of the bowl, the accessibility, my pain level, the swelling in my hands to open the package, etc- it would take me at least 10 minutes to come back. By then, I’ve forgotten what the movie is even about.  Now when I say, “Pause it, let me get us some popcorn really quick,” it’s LITERALLY quick and I’m back in three minutes tops. Ha!

It’s unbelievable! Andres is always singing the theme song from Fast and the Furious, because that’s exactly how I feel now. “Too Fast…Too Furious.. Too Fast…Too Furious…”
Andres and his dad, Joyce. Don’t they look like twins?
It still feels so surreal sometimes, as if I am not myself. 
I can only give a million thanks to my friends and my family for helping me and supporting me through thick and thin.
I have no words to express my intense gratitude to all the wonderful people who dedicate their lives to help people they’ve never met, in order to give them a better quality of life. It’s a wonderful thing!  
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