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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Thursday, May 26, 2011

My 1st Guest Post

I have had the very distinct pleasure of "meeting" some incredible people while on this journey with my Jenna "Bean". One of them is Jess. Although we have never actually met, she simply exudes a strength and light that can be seen or maybe felt even through the computer. I know, that sounds kind of strange, but seriously, she does. I felt compelled to know more about her journey, her story. So, a few months back I asked if she would be willing to put something together for me. She graciously accepted my invitation to share her story here. I didn't make it through the first paragraph without crying and by the end the lump in my throat was so big I could barely swallow past it. The following is Jess' story, in her words.

My name is Jessica, I am 16 years old, and I am battling Polyarticular Juvenile Rheumatoid Arthritis (JRA). My journey began at the tender age of 2. One afternoon, my mom came home from work to discover my right knee very swollen. She rushed me to the Johns Hopkins Hospital ER where x-rays, labs, and a bone scan (at just 2 years old, I was able to complete this test without any form of sedation) were performed; my right leg from the hip down was placed in a cast as the doctors were puzzled about what was causing my knee to be swollen, they simply figured I had broken my leg. After seeing a specialist, a week later we received the diagnosis of Pauciarticular JRA. I was started immediately on Naproxen, Methotrexate (MTX), and Prednisone to combat the disease. Despite the early, aggressive treatment, within just a couple of short months, the inflammation had spread to literally almost every joint in my tiny body. My disease was then labeled as Polyarticular JRA. At such a young age, I quickly adjusted to my new “normal”. I learned to cope with the excruciating daily pain, injections every week (I tried my best to be brave), and many visits to the Pediatric Rheumatologist and Pediatric Ophthalmologist (did you know that JRA can cause eye inflammation?). Another hurdle I learned how to jump early on was getting monthly blood work; I can safely say by age 3, I became a pro… I completed my first tear-free blood test! I was catching on quickly…
                Around age 4, my mom and I relocated to warm and sunny South Florida. Despite remaining on the anti-inflammatory, MTX, and steroids for about 2 years, my joint inflammation remained and even progressed. My medications were increased and I started Physical and Aquatic Therapy. I loved Aquatic Therapy… That heated pool was the only place I was free to move and be almost pain-free. Physical Therapy on the other hand was a nightmare, I did not like it! Sessions would wear me out and cause me to be in agonizing pain… But after 6 months of enduring this treatment plan, the majority of my inflammation was gone. I slowly improved and for the first time since diagnosis, I was able to begin weaning off the Prednisone. Eventually, I had officially achieved my first medicated remission! I still required treatment with the MTX and anti-inflammatory, but I was finally able to experience life inflammation-free. This remission, however, was short-lived. Just a few months later, the inflammation came back with a vengeance; my Rheumatologist suggested I have two cortisone injections in both knees. I underwent this procedure at 5 years old without any form of anesthetic. Unfortunately, the swelling did not respond at all to the steroid joint injections. My meds were increased again, and we found ourselves dealing with the beast – Prednisone – yet again. This trend continued for the next couple of years – I would begin to flare, be placed on steroids and have my MTX dosage increased (sometimes I was given upwards of 30mgs), then the inflammation would get better and meds would be decreased… Only to find myself flaring yet again. This vicious cycle was frustrating because the range of medications that could be given was limited and, as a result, I ended up on steroids and higher doses of MTX for every single flare. Regardless, I remained very active! I loved dance, played soccer, and karate was my favorite sport. I knew I had arthritis, but I also knew I’d never let it have me!
                Around age 11, I experienced yet another flare after doing well for a short period of time with minimal inflammation. My MTX was increased (again) and this time, my liver had a nasty reaction to the chemotherapeutic drug I had been on (without break) for the past 9 years. The Rheumatologist decided he wanted to biopsy my liver. I was placed on steroids (again) and my MTX dosage was decreased in hopes of showing improvement. A few months later, I was told I had achieved my second medicated remission! Prednisone was ended then, and for the next 3 years I continued to take my MTX, but I lived completely without inflammation.
                I felt great... My mom was ecstatic… We actually thought we had actually conquered this awful monster some like to call “Arthur”… Until December of 2009 when a small amount of inflammation was detected in my right knee. Around this time, I was also diagnosed with kneecap misalignment in my right knee and osteoarthritis caused by the damage the JRA had done to many of my joints. In January of 2010, I started having chest pains and it was discovered that I had high blood pressure. Because JRA can result in extra-articular manifestations that include inflammation of the internal organs, I was quickly sent to a Pediatric Cardiologist and a Pediatric Nephrologist for evaluation. After many tests, the worst possibilities were ruled out, and I was diagnosed with secondary hypertension and costochondritis. The swelling in my knee was minimal, but stubborn, and it remained that way until the summer of 2010. I had a massive flare that left me barely able to walk. It was difficult to relearn to cope with the pain I had been without for so many years. I was unable to volunteer with my sweet kiddos at the Children’s Hospital I visit every Friday, hang out with my friends, and enjoy my summer. That is when we decided to start on a new biologic medication called Enbrel. When I was younger, these types of medications were either unavailable or very new, so they were never an option. Within 2 days of my first injection, I was able to move again! I was so blessed to have such a great response as many kids with JRA don’t respond as well to medications and need much more potent medications.
                I was doing well on the Enbrel for a while, almost close to a third medicated remission. Then, other issues started to arise. I had been dealing with GI problems for about a year, but around November of 2010, they started to get worse. I was referred to a new GI specialist who decided to perform some tests. She took a total of 11 biopsies, 6 of which showed mild inflammation. Today, my Rheumatologist believes this may be an indication that I am in the early stages of developing Crohn’s Disease; having JRA (an auto-immune disease) increases your risk of developing other auto-immune disorders. I am to begin a new medication called Humira on June 15th, 2011. As if that’s not enough, due to all the anti-inflammatories I had taken over the years, I now have Gastroesophageal Reflux Disease and a recent Gastric Emptying Scan confirmed a diagnosis of Gastroparesis (GP). I was started on Erythromycin to increase the motility in my stomach; sadly, the Erythromycin didn’t work. On June 2nd, 2011, I am scheduled to have intra-pyloric injections of Botulinum Toxin (Botox) to help the GP; if this works, I will have Botox injections in my stomach on a routine basis. Unfortunately, due to the severity of my symptoms, my GI specialist believes I may also have a motility disorder of the intestines. Within the next few months, I will travel up to Children’s Hospital Boston for more specialized testing. What does this have to do with JRA? 14 years after diagnosis, I am still on Methotrexate, a chemotherapy drug. We don’t know what has caused these GI disorders… Perhaps damage from long-term use of such harsh medications? Only time will tell…
                Living with JRA is both a blessing and a curse. I don’t want to say it has taken away my childhood, but it has caused me to “grow up” a lot faster than most. When you are forced to confront pain, many pills, shots, and scary tests at such a young age, you are also forced to mature way beyond your years; I was often referred to as an “old soul” when I was little. Being a teen with JRA can be challenging. One of the most difficult things I face would have to be the lack of understanding that others have of JRA. Other kids think I’m overreacting when I’m limping when, unfortunately, it’s something I just can’t control at times. Perhaps having to take so many pills and give myself so many shots is even more difficult. The majority of my friends cannot recall the last time they got a shot… I gave myself one last Saturday. Having JRA has certainly taught me who my true friends are. I am so blessed to have such a supportive group of friends. My family, though, get me through everything. My mom is my rock and I’m so blessed to have her. She has fought so hard for me over the past 16 years and she is my best friend; I love her to death!
Today, I still battle with the same vigor as I did when I was first diagnosed with JRA. I am currently taking a total of 18 medications on a routine basis to manage my diseases, but I try not to let my JRA hold me back. I try to always look on the bright side and view my cup as “half full”. In a way, JRA has awarded me many blessings. It has given me compassion for others in pain; I devote much of my time to volunteer work, specifically with sick children. It has given me a greater outlook on life; I know my journey has been a long and tough one, but there are so many others that have it so much worse than I do. JRA has also strengthened my faith. Having JRA has allowed me to meet some pretty amazing people and inspiring little ones. I have gained new friends… Ms. Iris who draws my blood might as well join my family. JRA has also influenced my plans for the future. I have decided to become a Pediatric Rheumatologist and find less toxic and more effective therapies for children with Juvenile Arthritis. I am working hard now in school in order to accomplish that goal; the 300,000 children dealing with Juvenile Arthritis deserve it. Until then… We can’t fight this battle alone. We need help… How can you help? Donations to the Arthritis Foundation can bring us one step closer to the cure. We need more awareness for this disease. Before reading this, did you know that kids get arthritis too? Thank you for taking your time to read my story.


Lentini Family said...

What a lovely post! Thanks for sharing your journey with us. My son has systemic JA and is 11. I am going to share this post with him tomorrow.

Kristie said...

Jessica you are truly inspiring I love your candid voice that is portrayed. I literally felt like you were speaking by the end because it was done so well precise and because I have a preteen I could feel the emotions when you talked about shots and friends! <3 you will be added to my prayers on a regular basis. Amy thank you for sharing!

Anonymous said...

thanks for sharing your story, it helps calm my fear for my 7 year old who has had JIA since 11 months old. She has combined treatment of methrexate and Humira and has joint injections every 6 months. I wonder how her body will cope with prolonged use, but your doing o.k thats a good sign. :) sherrie, Australia