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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.

Monday, May 16, 2011

Let's Move Together Arthritis Walk, Charlotte NC

This past Saturday, May 14th, we walked to show our support of not only our Jenna Bean, but the 50 million Americans, which includes 300,000 children that suffer everyday from this horrible, painful, debilitating, mystifying disease. I was worried that we would not hit our fundraising goal of $1000. It was right down to the wire but we surpassed it! We had a team member goal of 15, had 11, walked with 5. I decided that day that if need be, I will walk alone. If need be, I will be the only one donating. If I can only raise $10 and walk alone I would still do it. Wouldn't you??

Jenna's Story

It all started one morning in July of 2008. It was a typical morning for us. Larry was getting ready to head out to work for the day and I was getting the 3 kids and myself ready to head to the beach for the day. As I was busy making lunches, gathering towels, toys and sunscreen, the kids are all running around the house in their bathing suits, Larry asked me, “Why are Jenna’s knees square?”. I thought he was crazy; it was the oddest question I had ever heard. I told him about that much and went on about what I was doing.
While at the beach, my Mother asked me the same question, “Why are Jenna’s knees square?”. It was as though time stood still and I felt like I was being sucked into a vacuum.  I figured there had to be something to it if both of them were seeing something. Some Mother I am huh? I called my little 4 year old Jenna over to me to check out these square knees. Hmm…maybe they are square. I then called over my 10 year old Kailey and my 7 year old Dillon. I wanted to line them all up and compare knees. Son..of…a…gun. Something was clearly wrong, yet nothing was bothering her. We spent the rest of the day at the beach as we normally did since Jenna seemed fine; I figured there was no emergency. The next morning I was able to get her in to see our pediatrician to check out these square knees.  She agreed that they indeed were too big and actually did look squarish. She said something isn’t right but that she didn’t want to jump to conclusions. She got x-rays of both knees that showed excess fluid and swelling. Uh…okay. She told us that the only thing that she is aware of that would cause that is Juvenile Arthritis but she was no expert on it and wanted us to see a rheumatologist ASAP. Uh…ooookay.
The dates get a bit sketchy and fuzzy from here but I believe it was within a couple of weeks to a month at best we were in to see a rheumatologist. He took some x-rays himself, ran some labs and did a physical examination. Keep in mind now, Jenna was ONLY four years old. The lab results confirmed the diagnosis of Juvenile Arthritis; his examination showed that she not only was affected in both knees but also a few fingers, toes, one elbow and one ankle. She was put on Naproxen in an attempt to control the inflammation in her joints. This turned out to not only be a failure but an epic failure. The Naproxen did nothing for her swollen, by now painful joints, but she also had a severe reaction to it. She developed sore, oozing blisters all over her extremities.  Unfortunately it took a few weeks to figure out that it was the Naproxen causing this. Once taken off the Naproxen the sores went away immediately. The Naproxen was then replaced with Motrin, she was scheduled to have the excess fluid drained from both knees, steroids injected into both knees and Methotrexate (chemotherapy med) was added to the mix. All in an attempt to gain some control over this disease. Remember, she is four years old. While the procedure itself was a nightmare, the draining and injecting worked WONDERS in conjuncture with the MTX and Motrin. She showed immediate improvement in all of her joints. And for the most part the swelling in her knees has stayed down. She did continue to have pain and some stiffness and needed 2 tsp of Motrin 4 times daily.
The labs that the rheumatologist ran in the beginning showed that Jenna was ANA+. He explained to us that this put her at a higher risk for developing complications with her eyes. What in the world?? Arthritis affects the eyes? Oh we had no idea the ride that we were in for. At her first eye check we were told she was all clear. Three to four weeks later we went back and she was in a major Uveitis flare up. This is the beast that proved to be our biggest battle. Jenna was put on eye drops to control the inflammation; I believe these were four times daily. At one point she was on three different eye drops but I honestly can’t remember all of them, how often she had them and what they were all for. I do however know that NONE of them are safe to use for an extended period of time. So, we had to find a systemic med that would not only treat the JIA, but also the Uveitis. Clearly Methotrexate was not going to work alone. At this point we added Enbrel to her med list. Enbrel is a once weekly shot, Motrin orally 4x daily and at that time she was taking her weekly MTX orally too. It felt like we were always in a doctor’s office or on the road. We had to take her to her rheumatologist , about an hour away every 6-8 weeks and she needed to see the Uveitis specialist, about 3+ hours away every 4 weeks! It was getting to be too much and nothing was getting better, rather it was getting worse. Over the winter months Jenna would wake up crying and refusing to get out of bed because simply getting up hurt her too much. We lived in Maine at this time and the winters can be brutal. If we had to go outside for anything I would have to carry her because her legs would freeze up. We felt as though we were banging our heads against a wall and for nothing!
We asked her rheumatologist if her felt that maybe a warmer climate would help her. He said that not only would it likely help her, but if we were interested in NC, he could get her into the Duke Children’s Hospital Pediatric Rheumatology clinic. The bonus is that the also have a pediatric eye clinic to see her and treat her Uveitis. One stop shopping. We researched them and saw that this is what we had to do for Jenna. We packed up and headed south, leaving behind all of our family and friends in June of 2009.
At her very first appointment the pediatric rheumatologist at Duke told me that her meds were ALL wrong and that she was so happy that we were here. Administering the liquid injectable MTX orally is not advised and Jenna is a clear reason of why, it doesn’t work. The Enbrel is not proven effective when treating Uveitis. Yeah, we figured as much since she had been on it about 8-10 months at this point with no sign of improvement. She also was not taking any folate or prevacid to counteract any side effects that she may have from the MTX.
Initially we tried just changing the MTX to injectable form to see if that would make any difference before we tried changing her from Enbrel to anything else. I wanted to take things slow. At her next visit however, there was no change in her eyes. Her joints were okay for the most part by this time with only minor swelling and pain.  Her MTX was increased from 0.4 ml to 0.8 ml and we made the switch from Enbrel to Humira. Her body did not tolerate the increase in the MTX. She had severe abdominal pain and her hair was falling out in clumps. I called the ped rheum and she backed her down to 0.6 ml, increased her folate and added prevacid to Jenna’s daily meds.  So by this time we are in about December of 2009, Jenna is not quite 6 years old yet, and she is taking 1 weekly injection, 1 bi-weekly (very painful!!) injection, and 2 sometimes 3 daily meds.
The good news is that the Humira worked!!! It cleared her eyes of the Uveitis, she was able to get off of those God awful drops that she had been on since fall of ’08 and she was showing more signs of improvement in her joints. She did have a rough time with infections in her ears, lungs, sinuses, etc. over the course of that winter. I think her body was working too hard at keeping up with the meds.
Her summer of 2010 was fantastic!!! She looked and felt better than she had in 2 years. It was so great to see and it almost felt as though we had a caught a break. Then fall of 2010 hit. I don’t know if it was just the shift in climate, but she started going downhill again. More pain, more fatigue, more frustration from this never ending ride.
Jenna’s meds remain the same at this time. Until she can be symptom free for one year, we cannot try taking her off of them. We are heading into summer again so I have high hopes of another great one! Jenna sees a pediatric PT once a week to help her regain some muscle mass that she has lost due to the JIA. She was fitted today with custom orthotics to correct some issues with her feet and ankles. I believe that after three very long years, we may finally be on the right path. I pray to God every day that we are.

Wednesday, May 4, 2011

May is for....

...Arthritis Awareness Month. Did you know that? Unless you are someone you know is impacted by this dreadful disease, I bet you didn't. Did you also know that there are more than 100 forms of arthritis? Bet you didn't. Did you know that Juvenile Arthritis is an AUTOIMMUNE DISEASE? Bet you didn't. Did you know that our kids (and lots of adults) have to take low dose chemotherapy as part of their treatment? Bet you didn't. Did you know that many of our kids hate day to day life because this disease makes them so different? Bet you didn't. For instance, a field trip means having to wear long sleeves, long pants, a wide brimmed hat AND sunscreen while your kid wears shorts a tee shirt and not a care in the world. Our kids have to miss school because your kid didn't get his vaccinations, so now there is an out break of chicken pox at school. Thanks. Our kids caught your kids cold because you felt he wasn't "sick enough" to keep him home from school. Now our kid has pneumonia. Did you know that the very drugs that treat our children, also make them sick? Bet you didn't. Or how about this, did you know that every Friday night I have to hold my baby girls hand while Daddy gives her her injections and she screams, "Please don't do this! WHY are you doing this to me?!" I didn't.
That video up there is of a sweet, BRAVE little girl named Jordan. Her family calls her Peanut because she is so small. So small, yet still SO brave! Oh yeah, did you know that this disease can stunt a child's growth? Bet you didn't.