Friday, November 19, 2010

How do we make them understand?

If I told you that my daughter was sick, that she has a disease that causes constant, some days crippling pain, that can cause her to feel as though she has the flu every day of her life, and that could (if she had the systemic type) kill her by causing inflammation to her internal organs, you'd be shocked, right?  You'd feel so bad for her, and think "Wow, that's pretty serious stuff".  Until I told you that it was called arthritis.  That tends to cause a "Oh, thank God it's nothing serious!" type of attitude.  Really?   How can we make people understand that it's not just because she fell on her knee a bunch of times and it wore out?  That it's not just a normal "getting old" disease?

One of the things that helped me keep it together after Emily was diagnosed was a board that I found.  It seemed to be filled mostly with seasoned mom's that had been in the arthritis route for some time.  One mom, Maggie's mom, was requesting prayers, and said that if they couldn't get her daughter off of the Prednisone soon she would probably die within the year.  Maggie's mom, Diane, had a Care Pages page going, and I became a regular visitor.  Diane, was so strong, so supportive, and so warm and caring.  The love that she had for Maggie showed with every word that she wrote.  Because of her mom, Maggie touched many, many lives, changing people for the better.  She was a very strong, brave girl, born with Brittle Bone Syndrome.  She developed autoimmune arthritis.  Autoimmune is when the body's immune system goes crazy and attacks the body.  (Sounds like a good time, eh?)  Maggie didn't have just regular old arthritis, either.  She started with Juvenile Arthritis, but then it developed a type called Behcet's.    The Behcet's actually moved to Maggie's brain causing seizures and some brain damage, along with piercing migraines.  She was 12- just shy of her 13th birthday when the Behcet's won.  Yes, Behcet's is a form of arthritis.  Yeah, that's not serious.  You can read about Maggie's story here.

Emily's doing better.  She has two types of arthritis.  She has Rheumatoid, but also Dermatomyositis falls under the umbrella.  (That's the muscle loss & inflammation).  She's tired after school, but she hasn't missed a day in three weeks!  Considering how much time she missed around her hospitalization, that's pretty awesome!  One bad thing about her being tired and all of the Prednisone... she's gone from a size 5-6 shirt to a 10-14 in about a month, and when we have time she's too tired to go shopping.  We get her new stuff, and she outgrows it in a week.  I miss my little, teeny baby that smelled so sweet all of the time.  She used to still smell like a baby.  The Prednisone has robbed her of that.  We can't cuddle with her the same way, and since she's sad about it we're sad about it.  However, she is definitely getting better!  I'm hoping that she can drop down the dosage of the meds this appointment we have on Tuesday.    I know that it won't be enough to help her to lose some of the water weight, but maybe it will help prevent her from gaining much more. 

She went on a field trip with school today.  They went to a food bank to help out!  I'm so happy about it.  I wish my son could have gone.  I think it's such a wonderful lesson.  Her class collected food to take with them, and the rest of the school helped.  They took over 900 pounds of food with them!  Her class and a fourth grade class went.  They sorted food, checked expiration dates, and arranged it on shelving to help people that need a hand.  They learned the value of hard work, helping people, how a little kindness can go a long way, and how just by doing simple little things you can make a huge impact on someone's life.  How awesome is that?????  Her teacher is awesome.  We're so blessed to have Emily in her class this year, to have such a good influence and good person in general helping to guide her.

I'm very blessed to have the family that I have.  We're certainly not perfect, but I think back to before Emily was diagnosed, how no one was happy.  Kevin & Ash couldn't seem to get along, Ash just wasn't happy at all.  None of us were.  Today, we obviously have our share of problems, but we have probably the happiest household of anyone I know despite it all.  We have learned to not sweat the little stuff, there's a bigger picture.  Don't take each other for granted; just love.  Ash, Kevin & I have little "opera sessions" where we speak to each other in opera.  Some days she talks too much, (just like me!) but for the most part, I am so lucky, so blessed to have her as my daughter.  At 16 she'd rather hang out with us than go out with her friends.  Tonight she & Kevin went to Harry Potter.  I'm so happy seeing them get along so well.  He's too cute, too :)  We're all a little crazy; I guess that's why we get along so well.  She made it in to her talent show at school!  Unfortunately it's on Tuesday, and Em & I will be at the doctor's all day.  I made the appointment before she knew that they were having a talent show, and it's hard to change.  I'm hoping that maybe Kevin will be able to go.  We shall see.  Oh, and on Wednesday Em has another Occupational Therapy evaluation.  She had OT years ago when she was first diagnosed.  She went for a year and a half, I think before she was discharged.  Should be interesting.  Well, I should be asleep already.  I shall return soon.......

1 comment:

  1. My dearest Emily~ You are a very brave girl. I too had JRA as a child and now I also have lupus on top of RA. Along with a host of other issues all brought on by the Auto-immune break down in my body. I pray a lot, talk about it when I need to and vent when I must. I want you to know, I KNOW what you are going through and I will keep you in my prayers every single day. I didn't care for the prednisone either but it was neccessary to get my severe flare under control. I hope you can come off it very soon. Maybe they can give you one of the newer drugs in the near future that won't cause you the troubles Pred does. Personally, I call it the devils drug. I know we need it, but man I don't like it.

    You stay strong and we'll keep you in our prayers. Very gentle hugs from your momma's new blogging pal. Tammy