Monday, September 30, 2013

Great weekend behind us.....

I am happy to report that Bella has decided to stay at home and not run away! =)
We had a great weekend and Bella's pain was quite manageable. She hurt, but it didn't keep her from going to watch her sister cheer, sleeping over at a friends, going to her Grammy's I kicked cancer's butt cookout, going to a hayride & corn maze, cheering at her own game, and visiting her friend. Though she was the first one to sleep each night (one of the crappy side effects of JA is being extremely tired), she really had a great weekend. It's weekends like this that make it hard to believe that my daughter has Juvenile Arthritis. Like I said before we will take the good days when we can get them and deal with the bad days as them come. I keep singing in my head a song from my childhood, "We take the good, take the bad, you take them both, and there you have The facts of facts, the facts of life." I use to love the show, The Facts of Life!!!
The crappy part of having an auto immune disease is the idea of not knowing what tomorrow may bring. The worst realization is knowing that this is a forever disease and we can't take a pill to fix the problem. We can only help manage the pain, slow down the progression of the disease, and try to reduce the joint/organ damage. I spend most of my free time educating myself and trying to understand the how and why of the disease. The first step in helping my daughter is to learn as much as possible and teach her. Soon Bella wants to do a presentation to her class about her disease so that her classmates can understand what she is going through. Education is powerful and we can't be upset by people not understanding when we haven't taken the time teach them.
Together Bella and I will begin the journey of educating others about Juvenile Arthritis and soon we hope to begin fundraising for the Arthritis Foundation in hopes that one day there will be a cure for JIA.

Friday, September 27, 2013

Emotions get the best of us.........

The roller coaster of emotions in our house lately have been exhausting. As a parent you go through the range of emotions when you first find out about your child being diagnosed with JA; anger, sadness, confusion, and disbelief. But by far the worst feeling is when you feel helpless, knowing that there is not a lot you can do to help your child when they have JA. The only thing I can provide is comfort, hugs, encouragement, and love. I can never take away the pain or heartache that come with this disease....this has been the hardest for me. I can barely image what it is doing to Bella emotionally...but it is changing her ALOT.
For the first time ever, I had to hear some pretty angry words from Bella. If you know her, this is not the norm. She has her sassy moments but she is truly a sweet kid.
The past week has been hard for her, the pain was the worst it has ever been. The doctors want her to keep trying the first round of meds & therapy for a bit longer before taking the next step.
Last night Bella told me she was running away from home as she ran to the door putting on her shoes.......I was shocked & angry. But I responded with; "Okay, go ahead. Let me know when you arrive there safely. Good luck finding another family that will let you be so mean to them." That stopped her in her tracks and she ended in her room crying. But not without her telling me that I don't care about her. UGH!!!  This was all over homework.............Is it summer vacation yet?!?!?!

They do say that you hurt the ones you love the most because they know you will be here in the end. So, I am taking this as Bella telling me she trusts me, loves me, and knows that I will be here no matter what.

Bella Mia, I love you with all my heart. I wish everyday that I could take this disease away from you. I wish I could stop all your pain and take away the crapping feeling days. I wish that I could make you feel normal again (soon enough we will figure out your new normal). I wish that we could turn back time and make it all go away. Until there is a cure for JA, I will help you get through the tough times and I will help you celebrate your victories. I will forever be here! I love you with all my heart! <3<3<3

Thursday, September 26, 2013

Back to school today! YEAH!

After a few bad days, Bella finally felt well enough to go back to school today! YEAH! She was missing her friends and nervous that she was falling behind in class. She was excited to get back to school. Crossing my fingers that today goes well for her.
Earlier this week she got her first "Get Well" card in the mail. It truly made her day! What kid doesn't love to get something in he mail?!?! Thank you to our Aunt Tina and Uncle Bobby in Delaware for cheering up our little Bella!!! <3<3<3

Wednesday, September 25, 2013

bella's post 2

 Today I had to stay home from school again because of how much pain I am in. Today my mom talked to the doctor to see if he wanted to see me. Today I barely can walk which stinks because if I need to get a drink, or if want a snack, or if I have to go to the bathroom I have even more pain.
~Bella :) <3

Do you know what JA is, I didn't?!?!?

First, I do have to say that this is not the same thing as the arthritis we heard our grandma complaining about all the time, it's not "old people" arthritis. Though Bella may look "okay", she is almost always in pain, she does a great job of masking it. Bella, just like any other kid wants to enjoy life and not be known as the girl that has a problem.
Juvenile arthritis is an autoimmune disorder. The immune system helps fight off harmful bacteria and viruses, but in an autoimmune disorder, the immune system attacks some of the body’s healthy cells and tissues. It is unknown why this happens or what causes the disorder. Some scientists believe it is in a child’s genes (passed from parents to children).
Arthritis typically affects the joints but JA can involve the eyes, skin and gastrointestinal tract as well.
Some symptoms of juvenile arthritis are joint swelling, pain, and stiffness that persistent. Some signs :
  • Morning stiffness or inability to walk
  • Joint pain and swelling
  • High fever and skin rash
  • Fatigue
  • Eye infection, swelling, and vision loss
  • Swelling in lymph nodes in the neck and other parts of the body.
Most children with arthritis have times when the symptoms get better (remission) and other times when they get worse (flare). There is no cure for juvenile arthritis.
Arthritis in children can cause eye inflammation and growth problems. It also can cause bones and joints to grow unevenly. If the joints are properly cared for, it could cause sever joint damage which requires surgeries.

Right now Bella is affected in the following areas; knees, ankles, hips, shoulder, right wrist, neck, eyes, skin, gastrointestinal tract, and most recently her back.
With her diagnosis we found out that she is at high risk for Lupus, Diabetes Type 1, Chrone's Disease, and other immune disorders.
Our goal is to get Bella into remission but the hard part is that we don't know how long it will take to get there. Once you are in remission you don't know how long it could last. They have told us that remission could last weeks, months, and if your lucky years. It's the world of the unknown for us, always wondering what tomorrow will bring. Each day is a new challenge, but we are learning and trying everything the doctor/therapist suggest. As expected it has been emotionally tough for Bella. Daily she goes through a range of emotions because she is sad, anger, confused, and disappointed. All she wants is to be a normal kid that can do everything. She joined Cheer Tyme this past summer and we had to withdraw her a month into her lessons.  Watching her friends do gymnastics has been the most heartbreaking for her. Though she still sneaks in a few cartwheels, splits, and flips....she knows that it would cause her pain later. But, we have become good at taking our sad energy and focusing it on something positive in our lives to help boost Bella's spirit.
So for now we spend most of our week at physical therapy and at appointments. We are changing our routines and trying to find our "new normal" life with JIA.

Tuesday, September 24, 2013

Bella's Post

  This week I haven't been to well. Over the weekend I had a fever. But that got a lot better. Everyday I complain about my back, knees, ankles, and my neck, and hips. Today I had to come home early from school because of how much pain I was in. I came home and started to rest but my silly sister forgot her drink today and her sneakers. So we had to go over to our school and give her the stuff she forgot.

  Right now I feel terrible because all of my joints hurt really bad. I have been watch movies non stop.
I really wish I didn't have arthritis because how much pain I have every day.
~Bella :)

What does this all mean???

So now we have a diagnosis for Bella. But the tricky part is that they have not done all their tests quite yet, so the exact type of Arthritis could change. As new ailments, aches, and pains show up it could point to a different direction, so we will see. In the mean time we are researching and talking to lots of people that have/had JA (juvenile arthritis). The doctor's plan of action right now is to take Naproxen( anti-inflammatory drug), Tylenol for pain, attend physical therapy 3 days a week, and rest the body when it needs to rest. The medications will change throughout the course of treatment as well. We also have restrictions for Bella, especially during school (didn't think it was that big of a deal, huh?). To my surprise (which brought on a new flood of feelings) Bella is now considered to have a disability. This little word made my heart break and it was by far the hardest thing to hear so far.
 As of right now Bella is not to carry any books to and from school, the school is to supply a 2nd set of books for home. She is limited to what activities she can participate in gym class, especially no distant running. She is to wear supportive, lace up/zip up shoes most of the time, which was quite heart breaking to my little shoe diva. The doctors gave in to those disappointed little eyes and told her she could have a "shoe vacation" IF she wore supportive shoes 5 days a week. A "shoe vacation" is wearing any shoe she chooses 2 days a week,(seems kind of silly, but it really is important to Bella). Any activities that are repetitive on her joints are also not permitted. Now this restriction gets tricky because she in cheerleading (with some restrictions too), the doctors believe that she should be able to do what she loves to keep her happy. So they asked her to quit gymnastics and compromised on cheerleading with restrictions. She cheers when she feels well and when the pain starts, she has to stop. Her restriction list will be tailored to her current conditions.
Bella wants to play basketball this winter and the doctor has decided that we will make that decision next month at her next appointment. The idea is to allow her to do things she wants to, but with the understanding that she may not be able to participate all the time.
We are trying to avoid damaging the joints, but also keep the joints flexible. It is so tricky to find a good balance. It's okay for Bella to run around at recess and play with her friends, but it isn't okay for her to run laps during gym....so confusing. But I get it!
The hardest part for Bella is being restricted because she LOVES sports, so now we are looking for new sports for her to try that are easier on the joints. The doctors have recommended swimming and Bella's response, "I already know how to swim, so no thanks." Yes, the doctor and I giggled at this one!

Monday, September 23, 2013

Boy did I have things all wrong......

A little mommy persistence can get just about anything accomplished......
Three years and four different doctors and we finally have a diagnosis. We found wonderful doctors at Hershey Medical Center and they are helping Bella manage her pain and find a new normal life.
After a couple of visits with a joint and bone specialist they decided to run some blood work to check for some possibilities. They mentioned to me that they were testing for lyme disease and arthritis and I instantly thought okay, what a waste of time. It couldn't be lyme because I would've noticed a tick on my daughter and it definitely wasn't arthritis because that is an old person's problem. Boy did I have things all wrong!! When we went back for Bella's test results I told my husband not to come because this was a wasted trip and at most I hoped that they would offer another path for testing. The moment when the doctor pulled up the test results and had a 2nd doctor join him to help explain the results made me realize that something was wrong. The test results that they read out loud made no sense and were totally unexpected, Bella tested positive for HLA B27. With a little explanation, I understood that my daughter had an auto immune disease,  which I barely understood and only remember two words of that entire conversation, Juvenile Arthritis. I couldn't think, let alone understand what they were trying to tell Bella and I. I just asked for them to print the results so I could share it with my husband because I knew I would forget most of our conversation. They then referred us to a Pediatric Rheumatologist to create a plan of action. That afternoon in July would forever change our lives.......
We couldn't see the Rheumatologist until the end of August and her first appointment fell on the first day of school. Leading up to this day I did a lot of research and had myself convinced that we would go to this appointment and they would tell us it was a mistake. I still didn't want to believe that my sweet girl had this auto immune disease, it just couldn't be possible.
Sure enough after further examination, she was officially diagnosed with Juvenile Idiopathic (Rheumatoid) Arthritis and Enthesitis Related Arthritis. The moment when you feel like you are Charlie Brown and all you can hear is this annoying sound coming from the teacher's mouth....yeah that was me at that doctor's appointment. I instantly felt overwhelmed, disappointed, angry, sad, and confused. I could barely accept the diagnosis, let alone comprehend what the doctor was telling me to do next. I am sure the doctor is use to this, so she was prepared with a packet of information and resources for Bella and our family. She offered many suggestions and a plan of action for Bella. This plan included more tests, medication for arthritis, physical therapy, and a disability sheet for her school. WAIT, WHAT...my kid is disabled?!?!  What just happened?!?!?

So what is HLA-B27, I'm still not quite sure but this is what the information packet tells me:
HLA-B27 is a blood test to look for a protein that is found on the surface of white blood cells. The protein is called human leukocyte antigen B27 (HLA-B27). A positive test mean HLA B27 is present in the blood. This test and her other symptoms become a diagnosis for an autoimmune disorder, called arthritis. An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue. When a person carries the particular protein it causes white blood cells to attack the body, particularly in the joints.

Our first post: Get to know us!

We have decided to start a blog to share our daughter's (Bella) arthritis story. Bella chose the name of her blog and will actively post on here as well.
Bella is a 10 year old little girl that is currently in 5th grade. She has two sisters; Valerie is 14 and Chloe is 7. Bella has 2 dogs (Hanna and Aussie) and 1 cat (Squeaks). Of course Mom (Jamie, that's me) and Dad (Danny). We all live in a small town right outside of Harrisburg, PA. We live a pretty traditional life and I am luck enough to be a stay at home mom (And I design and hand make handbags from home) while Dad works Monday-Friday to pay all those pesky bills.  We spend most of our time running our kids to numerous sporting activities each week and trying to figure out the perfect balance (does that really exist?). We are very involved in the community and we try to offer help whenever we can. Bella has been running her own food drive for the past 4 years (pretty amazing, huh?). Collectively she has raised over 3000 pounds of food that she donated to needy families in our community, the local food bank, and a soup kitchen in Delaware. I am one proud mama to say the least.
Bella is a normal 10 year old girl that loves to shop, play sports, do crafts, and collect shoes (yes, she has quite a collection). Bella loves cheerleading, gymnastics, basketball, and baseball. But most of all she loves her friends and enjoys quality girl time!
As many people see her, they think she is a happy, healthy young lady. But for the past 3 years she has been battling joint pains (and other quirky ailments) that have gone undiagnosed until recently. Honestly, until the winter of 2012 we didn't take the complaints to seriously either. But when she wanted to miss practices/games because she hurt too much I realized that things might be more serious that growing pains. When she started waking up in the morning crying because her back and ankles hurt, I got a little worried. The day that she felt like her legs couldn't hold her up was even more scary for this mama! Even this summer when we went with friends to see her favorite artist, Justin Bieber, she spent over half of the concert sitting in her chair teary eyed because she couldn't stand without pain and shaky legs. These are the moments when you realize that you have to fight a little harder for your child and find a solution. And so we did..........life would quickly become so different for Bella!

In the posts to follow we will help you understand the journey Bella will take............help cheer her on during the tough times and celebrate the victories big and small!