JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

My Photo
Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Monday, September 20, 2010

The Past Year....

I've been doing some contemplating and thinking a lot lately, and have come to realize that the past year, has really sucked. It was probably one of the worst years I've been through.

It started in July 2009 when I went to the ER and found out I had Pneumonia in the left lung, and a kidney infection.  I went on antibiotics, thinking it'd clear everything up.  A week after stopping the antibiotic, I not only didn't feel better, I felt worse.  I was coughing up a lot of junk.  Went to the doctor and she thought it was my asthma, put me on prednisone.  2 weeks later, still not better.  Went back to the doctor, did some X-Rays and found out I had double pneumonia.  Put me on a strong Antibiotic. (This goes on and on so I'm speeding ahead to September)

Then, in September, my mom was diagnosed with Breast Cancer.  She was put on radiation, but no Chemo. Which was a blow, no one wants to hear their mom is sick.  In October she ended up in the hospital, for what? PNEUMONIA.  And at this point, 3 months later, I still had mine.  My mom met with a great Lung Specialist and referred me to him.  He was great! Ran, many, many tests.  Kept putting me on antibiotics and my damn Pneumonia just never got any better. 

Because I was so sick, I had to stop my Humira, my RA medicine, which led to a really bad flareup.

November 5th my lung doctor scheduled me to have a lung biopsy, to see if something else was going on with my lungs.  I also stopped working since everything is going on. The surgery went fine and I was sent home.  The next day I felt wicked sick and vomited and vomited and had a 104 temp.  Went to the ER and found out I had the H1N1 flu!  And I STILL had pneumonia.

In December my Glaucoma flared bad and the Monday before Christmas I was rushed in surgery! I was a pirate for Christmas that year, sporting a great eye patch, haha.

After discussing things with my Rheumatologist and Lung doctor, they refereed me to an Immune Specialist. I met with him in January and he ran tests.  The pneumonia finally went away in January after being on the Z-Pac for 2 weeks!  The tests showed that I have an Immune Deficiency called IgA-Defiiciency, which means I'm missing my Antibody-A, and will never get them back.  Those antibodies fight off infections in the ears, nose, throat, digestive track and lungs! Explains a lot.  I had to take an antibiotic every day, but now I've started an IV that should help raise my other antibodies.  Lets hope!

Also in January, my dad ended up in Rehab for his drinking, he's been an alcoholic since he was 18.  We hoped things were looking up and he would really get help. 

In May my mom was re-diagnosed with Breast Cancer and was scheduled for a double mascetomy in July. 
On July 10th, just a week before my moms surgery was scheduled, I received a phone call from my sister saying my dad was had been rushed to the hospital, his liver and kidneys were failing.  I went and saw him, and things didn't look good, but I hoped now that he was getting help, he'd get better. Also, my moms best friend for years, passed away of cancer. A day or two later, I found out a girl I used to dance with, was killed in a boating accident.

In June my Great Aunt Ginger passed away... my mom and rest of the family, but especially my mom, were really close to her. Another blow.

My mom had her surgery and it went well.  She is now cancer free.  Still, she is currently healing, which seems to be taking long, but shes doing good, which is all that matters.

On August 10th, my sister called me at 1230am... she said my dads liver and kidneys had stopped working and everyone was going to the hospital to say goodbye. I got there as fast as I could and watched before my eyes, my father die.  He took his final breath right at 3am.  I never imagined it would happen to him so young.... I miss him more and more everyday, and it still seems so surreal to me.  He will never be at my wedding or meet his grandchildren.... things I really don't want to think about.

Since then all the medical malhaps have put a financial dapper on things....its made life very difficult.  I feel like I've aged 20 years the past year. With all the stress and worry, its no wonder my health hasn't been what it should be. I've started two new medicines that will hopefully get things better.  I really hope for a better year this year.... I'm not sure how much more I can handle.


Post a Comment

Subscribe to Post Comments [Atom]

<< Home