Mar 2, 2010

Meet Jessica, you will be so glad you did!

Presently there are around three hundred thousand children living with Juvenile Rheumatoid Arthritis. I have just recently became friends with a 15 year old young lady named Jessica. Jessica was diagnosed with Juvenile Rhuematoid Arthritis at the age of two years old. I met Jessica on facebook where she was kind enough to share her story with me. As you will soon find out, Jessica is an amazing young lady with a huge heart. Tears rolled down my face as I read her story and everything that she has had to go through. Even though I have never met Jessica, she is very special, I think you might agree too! Because it is important to me to put a face to this disease, Jessica has agreed to let me share her story with you! After reading this, you may agree that the "small" things in life that seem so bad just might not seem so "bad" afterall! Please continue to pray for Ayla, Jessica and all children living with this disease.

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My journey with JRA begins at age two. One afternoon, my mom came home from work to discover that my right knee was very swollen. Alarmed, my mom took me to the Johns Hopkins Hospital ER. Within a week, I was diagnosed with Pauciarticular Juvenile Rheumatoid Arthritis. My case was referred to Dr. Sills who placed me on Naproxen, Methotrexate (an aggressive chemotherapeutic agent), Prednisone (a harsh steroid), and Folic Acid (to thwart some of the effects of the Methotrexate) to combat the disease. After a few months my disease progressed and I had inflammation in virtually every joint in my body; Dr. Sills labeled my disease as Polyarticular.
Around age four, my mom and I relocated to Florida. There, my care was referred to Rheumatologist, Dr. Rivas-Chacon, at Miami Children’s Hospital and Ophthalmologist, Dr. Miller. Soon after the move, it was recommended that I see an aqua therapist and a physical therapist. We quickly became acclimated to my new schedule which included AT and PT visits three times weekly, eye exams once a month, rheumatologist visits and blood work every other month and, of course, meds every day and injections once a week. Within six months of enduring this treatment plan, the majority of my inflammation was completely gone. I was taken off the Prednisone and my doctors agreed it was safe to end the AT and PT and lower my dosage of MTX. I had achieved my first remission!
Every time I went to see the Rheumatologist, he decreased my MTX dosage more and more, until a few months later, I experienced a flare-up, beginning in my right knee. As the disease progressed, Dr. Rivas-Chacon amplified my MTX dosage and suggested I have two cortisone injections in my knees without any form of anesthetic. I underwent this procedure and experienced no benefits whatsoever. This infuriating cycle of getting better, then flaring-up continued for years. Throughout this never-ending rollercoaster ride I was never taken off of Methotrexate; yet, I remained very active through dance, karate, and soccer. I was always doing something!
Around age 11, I experienced yet another flare-up, and my MTX dosage was, again, increased, but this time my liver had a nasty reaction to the drug, and I found myself almost confronting a liver biopsy. The dosage was promptly lowered in hopes of showing improvement. My liver quickly recovered, but my joints didn’t. With the help of Prednisone, my disease went into remission. This remission lasted three lengthy years! It was great! Though I still had to take my MTX and Folic Acid, I didn’t suffer any pain from the JRA.
I am now fifteen years old, and just about two months ago, after we all thought I conquered the JRA for good, my right knee became inflamed. But, that wasn’t my biggest dilemma. I was just diagnosed with osteoarthritis (due to the damage the JRA had already done to my joints) and malalignment of the patella in my right knee, both of which cause me discomfort. In addition, I was recently referred to a cardiologist and nephrologist due to hypertension, shortness of breath, and chest pains. Plus, I’ve had a few episodes of nystagmus, so my ophthalmologist referred me to a neurologist. The past two months have been packed with doctors’ appointments, scans, ER visits, blood work, tests (including a thirty-day cardiac monitor), EKG’s, and echocardiograms; and in addition to MTX and Folic Acid, I shortly found myself taking Lisinopril, Zofran, and Naproxen. After all of this: still no diagnosis.
As I reminisce on my battle with JRA, I can remember the pain, the doctors’ appointments, the shots, and the pills, but I don’t recall ever feeling upset about it. It truly didn’t bother me. I think that’s what amazes me the most about children; no matter how bad things are, they are always blissful. We can learn a lot from little warriors like Ayla. And although I’m not happy I have JRA, I believe I have reaped many benefits from living with it. Having JRA has taught me to have empathy for others who are in pain, not to sweat the little things in life, and to be thankful for my wellbeing; sometimes I may not feel healthy, but there are many others who have it a lot worse. It has also given me the opportunity to meet a lot of great people and learn a lot of things. Whenever I go to the Rheumatologist’s office, I show the medical students how to do things! As for the future, I plan to beat my JRA (and keep it away forever), become a Pediatric Rheumatologist, and find a CURE for Juvenile Rheumatoid Arthritis.

Hope Ayla and everyone else is well!
Take care,
Jessica


Feel free to leave Jessica a word of encouragement, I am sure she will be reading this post :)

Thank you so much for taking the time to read about something that means so much to me!

25 comments:

carissa @ lowercase letters said...

i love what she said about not feeling upset about it - even with all the pain she endures. what a great outlook. it makes me beyond embarrassed to think about what i get upset over. jessica is truly a beautiful gal!

Maria Lane said...

Jessica is so beautiful!! What a strong girl that has a great out look!!! I hope you are having a great week too! I will sure post pics when Im done!!:)

Stephanie said...

What a strong, brave young woman! Her outlook is wonderful. It really puts things into perspective. I am so glad she shared her story.

Hey Jessica, you should start a blog ;)

3LittleByrds said...

Jessica your story touched me so. You're such a brave girl who has been through so much. I know you touch Lesli and Ayla and give each other encouraging words. Thanks for sharing your story. Lesli, where did you book at Disney? On property? We are annual passholders and my parents are vacation club members so we go ALL the time. You can even email me if you want if you have questions. It's debbie.combs@mailcity.com

Christina said...

Jessica, you are an amazing girl, with a level of perspective at your age that most people do not attain in their lifetime (I would include myself in that latter category). I pray that you are successful in your goals whatever they are, especially pertaining to this disease. What an encouragement you are for others, like Ayla and her family.

Robin said...

Jessica, Thank you for sharing your story, and your great outlook on life. We can all stand to learn from you and apply it to our daily lives. You are in my prayers, as well is Ayla and all the other children who are in pain.

Teresa @ Grammy Girlfriend said...

She is beautiful and loved you sharing the story

thelumberjackswife said...

Jessica-you are amazing and strong!

Heather said...

Both of these girls are so beautiful and Jessica has a great outlook with what she has been dealt. Praying for both girls and the many others who deal with this on an everyday basis.

Kaz and Amy said...

What a great outlook! Thank you so much for sharing this especially with me! I hope you have a great day!

Amy
www.theprikazskys.com

The Coleman Family said...

Jessica - what a great story! You have a great perspective on life already at your young age. I pray that you and Alya will beat the battle with JRA, and you will be able to give others hope throughout your life. Thanks for sharing your story!

Lesli - what a great idea to have Jessica share! Little Alya has wonderful supportive mom! Having two little ones so close in age is awesome. Glad to meet you and have someone to share our fun times with! Have a great week!

Maria Lane said...

THANK YOU THANK YOU!!!!!You are SO SWEET!!!! The package you sent got here this morning!!!! That was just so thoughtful and sweet of you and I cant thank you enough! Im going to try and send you that email again today!lol, dont know whats going on w/ it! The girls love their stuff!!! They thought the easter bunny came early or something, I told them one of mommy's sweet friends sent us some goodies! and they said "we love this stuff"!!!:)

`xxoxo

christy rose said...

What a beautiful young lady!! I pray that she does exactly what she has planned for her life. What an awesome desire and dream! Thanks for sharing this story of such a lovely girl with such a big heart!

Stacey said...

Jessica thank you for sharing your story with the world! My daughter was also very young when she was diagnosed. We've been fighting JRA for 5 years now and like you there has been ups and downs.

My daughter too wants to be a pediatric rheumatologist, so she can help kids like her. Good luck in life and I hope you do beat JRA!

A Lady in Waiting said...

Jessice- Thanks for letting Lesli share your story. You are such a strong young woman and have a wonderfully positive outlook on life even though times have not always been easy for you. I hope that you follow those dreams and can find a cure for all the other children who are dealing with this trying disease!

Christensen's said...

Wow that's an incredible girl! Made me tear up right before leaving the house... ha dang it.

And YAY!!! I won!! The one weekend that things were so hectic and I hadn't checked up on my blogs I WIN!! I'm so excited! Should I email you?

Christensen's said...

Actually when I click your email button it takes me to outlook express which I don't have set up... I use Yahoo. So when you get a second let me know your email address and I'm so looking forward to my goodies! Thanks so much!! It just brightened up my day!

Anna said...

Jessica, u r a very brave person and i want u to know that u r my hero. Btw u should make a blog it would be a great inspiration : )

Karen said...

Wow...that girl was amazing and wrote beautifully!
Thank you for sharing her story and creating awareness...

Brittany Ann said...

Jessica, thank you for sharing your story! You are truly beautiful!

Whitney said...

Bless Jessica and bless sweet Ayla! What an amazing story!

rinniez said...

wow. i just stumbled across this blog, so wasnt sure what to expect...
what an amazing story. thankyou so much for sharing this with us. =)
xx

amy (metz) walker said...

Wow, what an incredible attitude even in the midst of suffering! Thanks for sharing her story!

Amy said...

I LOVE this story! What a blessing that child is to this world!:) Amazing, and just what I needed to hear today!

Kacy said...

What a fabulous little girl. Thank you for giving a platform to share her story. Having experienced this pain and inflammation and drug side effects, I know what a tough cookie Jessica is. So much of this disease is mental and she has such a wonderful attitude and outlook. Lesli- you are such a special person for sharing so much of yourself with others. Thank you.